Dermatoethics: Contemporary Ethics and Professionalism in Dermatology [2 ed.] 9783030568603, 3030568601

Table of contents :
Foreword
Preface to First Edition
Preface to the Second Edition
Contents
Contributors
I: Introduction
1: Foundations of Clinical Ethics
Introduction
What Is Ethics?
What Ethics Is NOT
Law
Emotions
Religion
What Is an Ethical Dilemma?
Major Moral Theories
Consequentialism (Outcome-Based Ethics), Including Utilitarianism
Virtue-Based Ethics
Other Moral Theories and Principles
Principlism
Ethics of Caring and Relationships (Feminist Ethics)
Teaching Ethics to Trainees
References
II: Clinician
2: Care of Older Adults: Autonomy, Capacity and Duty to Protect
Discussion
Case Scenarios
Case 1
Case 2
Case 3
Case 4
Case 5
Case Analyses
Case 1
Case 2
Case 3
Case 4
Case 5
Conclusion
References
3: Genetic Medicine Arrives in the Outpatient Clinic: Ethical Concerns for Dermatologists
Discussion
Case Scenarios and Discussions
Case 1
Case 2
Case 3
Case 4
Conclusion
References
4: Who Decides? Consent, Assent and Confidentiality in Pediatric Dermatology Practice
Introduction
Some Basic Concepts and Terminology
The Role of Parenting
Adolescent Considerations
When Agreement Cannot be Reached
Case Scenarios
Case 1
Case 2
Case 3
Case 4
Case 5
Case 6
Case 7
Case 8
Conclusion
References
5: International Volunteering
Introduction
Ethical Issues
The Context of Inequality
The Primary Mission and Conflicts of Interest
Limited Time and Resources
Cultural and Language Barriers
Burden on Local Systems
Mismatched Host Needs and Services Provided
Guidelines for Best Practices
Barriers to Best Practices
Cases
Case 1
Case 2
Analysis of Cases
References
6: Bridging the Divide, Virtually: Ethics of Teledermatology
Background
Cases
Ethical Issues and Case Discussions
Conclusion
References
7: Unsolicited Dermatologic Opinions: Ethical, Moral, and Legal Issues
Legal Issues
Analysis of Case Scenarios
Differing Perception of Unolicited Diagnosis by Physicians and the Public
How to Offer Unsolicited Advice or Diagnosis [4]
References
8: Sharing Care with Physician Assistants and Nurse Practitioners
Introduction
Ethical Considerations
Consequentialism
Deontology
Case Studies
Case 1
Case 2
Case 3
Case Analysis
Case 1
Case 2
Case 3
Conclusions
References
9: The Ethics of Integrative Medicine
Introduction
Ethical Principles
Ethical Challenges
Cases
Case 1
Case 2
Case 3
Case 4
Case 5
Conclusion
References
10: Cosmetic Dermatology and the Ethics of Enhancement
Setting Aesthetic Norms
Cosmetic Procedures in Children
Resource Allocation for Cosmetic Dermatology
The Limits of a Patient’s Aesthetic Preferences
Dispensing Cosmeceuticals in the Dermatology Practice
Case Scenarios
Case 1
Case 2
Case 3
Case 4
Conclusion
References
11: Lying in Patient Care: Ethical and Moral Issues
Therapeutic Privilege: Ethical and Moral Arguments
Lying on Behalf of Patients to Third Parties: Ethical and Moral Issues
Case Scenarios
Case 1
Case 2
Case Discussions
Conclusion
References
12: Therapeutic Non-Adherence
Ethical Arguments Relating to Therapeutic Non-Adherence
Communication Techniques with Patients to Enhance Adherence
Moral Issues
Legal Issues
Case Scenarios
Case 1
Case 2
Case 3
Case Discussions
Summary
References
13: Self-Destructive Patients and Unreasonable Care Requests
Ethical Arguments
Moral Issues
Legal Issues
Case Scenarios
Case 1
Case 2
Case 3
Case Discussions
Summary
References
14: Medical Errors, Disclosure, and Safety in Dermatologic Surgery
Introduction and Ethical Framework
Cases
Case 1
Case 2
Case 3
Case 4
Discussion
Case Analysis
Conclusion
References
15: Autonomy, Isotretinoin, and iPLEDGE: The Ethics of Burdensome Regulation and Prescribing Teratogenic Medications
Introduction
Patient Autonomy
Justice
Confidentiality
Clinical Scenarios
Case 1
Case 2
Case 3*
Case 4*
Case Discussion
General Principles
Case 1
Case 2
Case 3
Case 4
Conclusion
References
16: Dermatoethics in Pregnancy
Introduction
Ethical Principles and Fetomaternal Relationship
The Fetus as Patient
Informed Consent and the Pregnant Dermatologic Patient
Summary of Key Points
References
III: Professional
17: Professional Boundaries: Safeguarding the Physician-Patient Relationship
Introduction
Framing the Issue
Boundaries
Case Scenarios
Case 1
Case 2
Case 3
Conclusion
References
18: Peering into the Gift Horse: The Ethics of Gift-Giving and Receiving in the Physician-Patient Relationship
Introduction
Discussion
Gifts from Patients to Physicians
Gifts from Physicians to Patients
Case Scenarios
Case 1
Case 2
Case 3
Case 4
Case 5
Case 6
Analysis of Case Scenarios
Conclusion
References
19: Ethics of Treating Family Members
Discussion
Analysis of Case Scenarios
Case Scenarios
Conclusion
References
20: Healthcare Ethics and Professionalism in Social Media
Introduction
Effects of Social Media Use on the Patient-Physician Relationship
Social Media for Education
The Ethics of Marketing on Social Media
Social Media for Research Recruitment
Licensing and Legal Considerations
Conclusion
References
21: Workplace Romance in Dermatology
Introduction
The Pros and Cons of Workplace Romance
Workplace Romance that Crosses the Line
Specific Considerations for the Dermatology Department
Evaluating and Managing Conflicts of Interest Arising from Workplace Romance
Summary
Case Scenarios
Case 1
Case 2
Case 3
References
22: Ethically Dealing with Differences: Cultural and Religious Determinants of Healthcare, Extreme Political Views and Bigotry
Cultural and Religious Determinants of Healthcare
Stereotypes and Biases
Trust of Medical Providers and Research
Language and Communication
Religion and Medicine
Complementary and Alternative Medicine
Cultural Competency
Special Section: Extreme Political Views and Dealing with Bigotry
Case Scenarios
Case 1
Case 2
References
23: Ethics in Caring for Sexual and Gender Minority Patients
Introduction
Definitions and Cultural Competency
Health Inequity in SGM Persons and Minority Stress Theory
Clinical and Ethical Issues in Treating Acne in SGM Persons
Case Scenarios
Case #1
Case #1 Analysis
Case #2
Case #2 Analysis
Conclusion
References
24: Feet of Clay: The Impaired Dermatologist
Introduction
Professionalism
The Scope of the Problem
Intervention
Burnout
Suicide
Assessing the Physician
Returning to Work
Case Scenarios
Case 1
Case 2
Case 3
Case 4
Conclusion
References
25: The Ethics of Maintenance of Certification in Dermatology
Introduction
Utilitarian Perspectives on MOC
Grandfathering
Redundancy
Relevancy
Cost-Effectiveness
Justice and Duty Perspectives on MOC
Practical Considerations
Future Directions for MOC
Case Scenario
Analysis of Case Scenario
References
26: The Ethics of Inpatient Consultative Dermatology
Introduction
Inpatient Dermatology: A Social Responsibility
Ethical Considerations Unique to Inpatient Dermatology
Challenges with Autonomy
Working within the House of Medicine
Issues with Access
Case Scenarios
Case 1
Case 2
Conclusion
References
27: The Ethical Responsibilities of Physicians During Epidemics
Exploring the Duty to Treat
Expressed Consent
Implied Consent
Special Training
Reciprocity
Professional Oaths and Codes of Conduct
Limitations of the Duty to Treat
Conclusions
References
28: Ethical Responsibilities to Economically Disadvantaged and Marginalized Patients
Discussion
Conclusion
References
29: The Ethics of Skin Cancer Screening
Introduction
Free Cancer Screening Events
Utilitarian Perspectives on Free Skin Cancer Screenings
Justice Perspectives about Free Skin Cancer Screenings
Skin Cancer Screenings as Expressions of Caring
Public Relations for Dermatologists
Case Scenario
Analysis of Case Scenario
Frequent Skin Cancer Screening Examinations at the Request of Low-Risk Patients (“The Worried Well”)
Autonomy Perspectives on Requests for Frequent TBSEs by Low-Risk Patients
Distributive Justice Perspectives on Requests for Frequent TBSEs by Low-Risk Patients
Case Scenario
Analysis of Case Scenario
References
IV: Businessperson
30: Ethical Issues Surrounding Private-Equity Involvement in Dermatology
Ethical Issues Surrounding Private Equity Involvement in Dermatology
Corporatization and Private Equity in Dermatology
The Competing Goals of PE and Medicine
Conflict of Interest and Competing Ethical Frameworks
What Makes the PE-Owned Practice Setting Unique
Which Ethical Framework Is Correct?
PE Impact on Quality of Care
PE Impact on Access to Care
PE Impact on Physician Wellbeing
PE Impact on Physician Autonomy
Potential Long-Term Consequences of PE
Healthcare Costs
Education, Training and Research
Sustainability
Case Scenarios
Conclusions
References
31: From Behind the Microscope: Ethical Considerations in Modern Day Dermatopathology
Introduction
Case Scenarios
Case 1
Discussion
Case 2
Discussion
Case 3
Discussion
Case 4
Discussion
Case 5
Discussion
Conclusion
References
32: Physician Advertising and Self Promotion
Introduction
History of Advertising and Self-Promotion in Medicine
Ethical Arguments
Classes of Advertising
Case Scenarios
Analysis of Case Scenarios
Conclusions: A Practical Approach to Advertising and Self-Promotion
References
33: Dermatoethics: The Ethics of Concierge Medicine
The Ethics of Concierge Medicine
An Overview
Ethical Concerns
Access
Diversity
Obligations Related to Training
Care Quality
The Benefits of Concierge Practice
Case Scenario
Case 1
Case 2
Conclusion
References
34: Medication Discount Programs
Introduction
Case Scenario
Case 1
Case 2
Ethical Considerations
Case Analysis
Case 1
Case Analysis
Case 2
Conclusions
References
V: Educator, Trainee
35: The Ethics of Mentoring in Dermatology
Special Considerations
Case Scenarios
Case 1
Case 2
Case 3
Case 4
Case 5
Case 6
Analysis of Case Scenarios
Case 1
Case 2
Case 3
Case 4
Case 5
Case 6
References
36: The Ethics of Service as a Department Chairperson or Residency Director
Ethics and the Department Chairperson
Beneficence
Autonomy
Non-maleficence
Justice
Dignity
Truthfulness and Transparency
Paternalism/Maternalism
Professionalism
Case Scenarios
Case 1
Case 2
Case 3
Case 4
Case 5
Case 6
Analysis of Case Scenarios
Case 1: The Importance of the Trusted Collegial Chair
Case 2: Communication and Fairness to Prevent Chair Town-Gown Dilemmas
Case 3: The Role of Mentoring Faculty: The Faculty’s Success is the Chair’s Success
Case 4: Dealing with Faculty Who Have “Monosymptomatic” Deficiencies
Case 5: Handling the Unsuccessful or Incompetent Faculty Member
Case 6: Handling the Impaired Faculty Member
Summary
Ethical Issues of a Residency Program Director
Case Scenarios
Case 1
Case 2
Case 3
Case 4
Analysis of Case Scenarios
Case 1: Dealing with Underrepresented Minorities in Residency Programs
Case 2: Fraternization and Inappropriate Sexual Relationships with Residents
Case 3: Intimidation Used as a Tool to Silence Residents
Case 4: Honesty and Trustworthiness
Summary
References
37: Ethical Issues in the Dermatology Match
Why an Ethical Analysis of the Application Process?
Increasing Competition in the Dermatology Match
Ethical Principles at Play
Unethical Behavior by Applicants
Unethical Behavior by Dermatology Programs
Violations of NRMP Policy
Ethically Questionable Behavior
Systemic Issues with Ethical Implications
The ERAS Photograph
The “Shotgun” Application Method
Application Cost
Program Screening Methods
Case Scenarios
Case 1
Case 2
Case 3
Case 4
Conclusions
References
38: Dermatoethical Challenges in Education of Medical Students & Dermatology Residents: Opportunities at the Bedside
Introduction
Part I. Role of Medical Students and Residents in the Dermatology Clinic
Case Studies
Case 1: (adapted from [1])
Case 2
Discussion
Part II. Teaching Ethics in the Clinic to Residents and Medical Students
Opportunities to Teach Ethics in Dermatology Clinics
Case Scenarios
Case 3
Case 4
Discussion
Conclusion
References
39: The Cost of Free Cosmetics: When Training and Capitalism Collide
The Cost of Free Cosmetics: When Training and Capitalism Collide
The Setting
The Patient
Medical Industry
Educators
Trainee
Conclusions
References
VI: Scholar
40: Peering into Publication Ethics
Introduction
Peer Review
Anonymity and Bias
Predatory Open Access Journals
Other Issues in Publication Ethics
Salami Slicing
Plagiarism
Ghost Writing
Conclusion
Case Scenarios
Case 1
Case 2
Analysis of Cases
References
41: Respect for Human Subjects: Ethics in Research Design
Significant Ethical Guidance Documents for Clinical Research
Nuremberg Code
Declaration of Helsinki
Belmont Report
International Ethical Guidelines
Good Clinical Practice
The Common Rule
Conclusion
References
42: Conflicts of Interest
Definition of Conflicts of Interest
Potential (and Real) Harms from Conflicts of Interest
Strategies for Managing Conflicts of Interest
Cases
Case 1
Case 2
Case 3
Analysis
Conclusion
References
Index

Citation preview

Dermatoethics Contemporary Ethics and Professionalism in Dermatology Lionel Bercovitch Clifford S. Perlis Benjamin K. Stoff Jane M. Grant-Kels  Editors Second Edition

123

Dermatoethics

Lionel Bercovitch  •  Clifford S. Perlis Benjamin K. Stoff  •  Jane M. Grant-Kels Editors

Dermatoethics Contemporary Ethics and Professionalism in Dermatology Second Edition

Editors

Lionel Bercovitch Department of Dermatology Warren Alpert Medical School of Brown University Providence, RI, USA Benjamin K. Stoff Department of Dermatology Emory University School of Medicine Atlanta, GA, USA Clifford S. Perlis Department of Dermatology Temple University Lewis Katz School of Medicine Philadelphia, PA, USA Jane M. Grant-Kels Department of Dermatology University of Connecticut School of Medicine Farmington, CT, USA Dermatology Department University of Florida College of Medicine Gainesville, FL, USA

ISBN 978-3-030-56860-3    ISBN 978-3-030-56861-0 (eBook) https://doi.org/10.1007/978-3-030-56861-0 © Springer Nature Switzerland AG 2012, 2021

This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG

The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

V

To Anne, whose love and endless patience made this project possible; to our children Deborah, Robert and Rhana, Paul and Rains, and Carol and Jim and our grandchildren, Ryden, Kaya, Adele, Valerie, Josie and Ethan, whose love and support make every day a joy; to my parents, teachers and mentors from whom I acquired my values and love of medicine; and to Charles McDonald, MD and Abrar Qureshi, MD, who have supported my career and made this work possible. – L.B To Katie, Evie, Leah and the rest of my family, friends, mentors, mentees and colleagues who have provided me with unconditional beneficence over the years and to my patients who trust and challenge me every day. – B.K.S To Barry, the love of my life and best friend, and to our children (Charlie, Lori, Joanna and Luke) and grandchildren (Grant, Landon, Chase and Carson Kels and Charlotte Albright), who fill our lives with joy and wonder. – J.M.G-K To Emily, Elliot, and Gabi, whose patience, love, and support are boundless; and to my patients and parents, Linda and Barry, who continue to teach me everyday. – C.S.P

Foreword Discussions of ethics have seemingly become mainstream after floating at the fringes of medicine for many years. Why is that? Have we become a more moral society (unlikely)? Have we been pushed in that direction for medicolegal reasons (maybe)? Or, perhaps most likely, have we come to realize that the decisions we make as physicians are often not black and white, not right or wrong, but can be influenced by a variety of factors that may or may not be within our control or in the best interests of our patients. Many of these factors are not physician-specific but a product of our broken (in my opinion) medical system. As an example, medical decision-making has shifted from the physician to the insurance company/ pharmacy benefit manager. I often tell patients that I only suggest treatment; their insurer ultimately dictates what care they receive. Is this ethical? Can prior authorization/step therapy be defended from an ethical standpoint? What about drug discount cards that push patients into buying expensive brand name drugs that may be no better than competing generic products? And can we defend our participation in infomercials disguised as industry-sponsored lunches or dinners? But we can’t blame everything on others, as many ethical issues are more physician-specific and start even in medical school. Aren’t the scales tilted toward students who can afford expensive exam prep courses or have the means to jet around the country for multiple interviews? Skip ahead a few years and you’ve completed residency without seeing a single liposuction. Does a weekend liposuction course really qualify you to do that procedure? We rail against cosmetologists doing medical procedures, but aren’t our colleagues who do “facials” in their medical offices also impinging on the cosmetologists’ scope of practice? Reading your own biopsies? Is that an actinic keratosis or a squamous cell carcinoma in situ? It’s no secret that you’ll be reimbursed a lot more for removing the latter. Your neighbor, your best friend, wants you to write a work excuse because you’ve diagnosed her with pityriasis rosea? How do you respond? How about that town about 100 miles away without a dermatologist, a potential “gold mine”? Should you hire an unsupervised physician’s assistant (PA) to work there, and if so, should you teach him your “tricks of the trade,” knowing one day he might quit and open up his own practice? We are all faced with multiple ethical challenges every day in our practices. The one common thread is that often there is no right or wrong answer; let conscience be our guide. The editors of this excellent volume lead us down the right path so we can all sleep well at night knowing that we made the best decisions for ourselves and, most importantly, for the patients who put their trust in us. Bruce H. Thiers

Distinguished University Professor, Department of Dermatology and Dermatologic Surgery, Medical University of South Carolina, Charleston, SC, USA

VII

Preface to First Edition What would you do if a dermatopathology laboratory offered to pay 85% of the cost of an expensive electronic health record system for your practice? What if a patient asked you to accept an invitation to become a Facebook friend? What would you do if you saw a lesion you suspected might be melanoma on the back of a stranger getting dressed two lockers over at the gym? And, what would you do if one of your associates began to exhibit early signs of dementia? These are examples of the many contemporary ethical and professional dilemmas dermatologists and dermatology trainees might face in their day-to-day work. The solutions are more nuanced than they may appear to be at first glance. Fortunately, dermatologists do not need to be trained bioethicists, healthcare lawyers, or philosophers to analyze and deal with such dilemmas. Nor do they need to have a ready solution for every ethical dilemma encountered. Dermatologists do need to recognize when an ethical issue or dilemma arises, identify key issues, assess relevant ethical principles as well as legal and professional issues, seek advice and supplementary information when indicated, and attempt to resolve the issue in a sound and satisfying way. This approach is illustrated in Figure. Analyzing a problem or decision Recognize existence of an ethical dilemma or problem Break dilemma down to its component parts Seek additional info including patient’s viewpoint Identify relevant legal, professional guidance Subject the dilemma to critical analysis Resolved

Not resolved

Justify the decision with sound arguments

Irresolvable conflict or law unclear-may need court to resolve

Behavioral ethicists emphasize the importance of honing one’s skills in ethical analysis to avoid self-deception. “When we fail to notice that a decision has an ethical component, we are able to behave unethically while maintaining a positive selfimage,” write Max Bazerman and Ann Tenbrunsel in a New York Times article (April 21, 2011, p. A27). Furthermore, they add, “research shows that people consistently believe themselves to be more ethical than they are … (and) that people who have a vested self-interest, even the most honest of us, have difficulty being objective. Worse yet, they fail to recognize their lack of objectiv-

VIII Preface to First Edition

ity.” Since all physicians have vested self-interests, conflicts of interest are inherent in the practice of medicine. Accordingly, research suggests that even the most ethically aware physicians may not realize their own subjectivity. This concept of this book arose from a regular seminar entitled “Dermatoethics” in the Brown University dermatology residency, led by one of the editors (L.B.), that began in 2001. At that time, our faculty recognized the irony that educational offerings in ethics were abundant for medical students, but virtually non-existent for residents who for the first time actually have meaningful independent responsibility for patient care. Furthermore, each year the seminar identified new situations reflecting the everchanging medical environment. Electronic communication, social networking, healthcare reform, the changing reimbursement scene, consumerism and the business of medicine, cosmetic dermatology and medical spas, and advances in genetic technology, all give rise to new ethical concerns. These developments combined with the frailties of human nature, to which physicians are not exempt, underscore the need for ongoing teaching and dialogue on contemporary issues in ethics and professionalism for dermatology trainees and practitioners. From 2001 to 2010, 136 English-language articles on ethics in dermatology were published. By contrast, there were only 98 articles published over the prior 20 years. The American Academy of Dermatology offered four forums and discussion groups on ethics at its 2011 meeting. There has clearly been increasing interest in ethical issues in dermatology. It is our hope that this book will serve as a resource to stimulate discussion and teaching in ethics to dermatology trainees, as well as for practicing dermatologists in academia, public and military service, and the community. No work of this scope can be accomplished without the help and support of others. We wish to acknowledge the encouragement, foresight and patience of the publisher’s senior editor, Grant Weston, as well as the tireless work of our production editor, Rebecca McArdle, in keeping tabs on all the contributors, chapters, permissions, and figures. We are also grateful for the administrative support of Allison Marshall, Dawn Elder, and Kathy Zenszer. Our contributors good-humoredly and willingly allowed their work to be subjected to numerous edits and rewrites, and the final product in no small measure reflects their diligence and persistence. We thank Dr. Antonio P.  Cruz for his assistance with technological challenges, usually with little notice. George Wakeman, Esq. provided insightful legal commentaries as helpful background to many of the chapters, as nearly all the chapters did not have authors with legal training. We would be remiss in failing to acknowledge the contributions of our former residents at Brown University who were the experimental group for this project (N = 37) and the foresight of Charles McDonald, M.D., Professor and Chairman of Dermatology at Brown University, who encouraged the establishment of this seminar course. And lastly, to our spouses and children, who sacrificed many hours of quality time with us during the preparation of this book, we are grateful beyond words. Providence, RI, USA Philadelphia, PA, USA

Lionel Bercovitch Clifford S. Perlis

IX

Preface to the Second Edition Medicine as a profession has a strong foundation in ethics dating back two millennia. Dermatology as a specialty, however, has been a latecomer to ethics scholarship. From 1990 to 2010, there were 98 publications on topics in ethics and dermatology. Between 2001 and 2010, there were 136 publications. Over the last 10 years, 341 articles (and 1 book) on ethics and dermatology have been published. This trend represents a growing interest in airing, analyzing, and debating ethical dilemmas and controversies in dermatology. The American Academy of Dermatology (AAD) recognized the importance of ethical behavior and professionalism by launching a voluntary four-part Ethics Pledge that a substantial portion of its membership signed onto. Top-tier dermatology journals such as the Journal of the American Academy of Dermatology (JAAD) have provided a platform for peer-reviewed, scholarly ethical analysis. Many residency programs have incorporated formal didactic sessions on ethics into their curricula and articles on ethics into their journal club discussions. A sample resident curriculum on ethics in dermatology was developed by an American Board of Dermatology subcommittee and continues to be hosted on the Board’s website as a resource for training programs. Much has changed in the 9 years since the publication of the first edition of this book. Teledermatology has become ubiquitous, seemingly overnight, with the COVID-19 pandemic in 2020. Ethical responsibilities of dermatologists during public health emergencies have transitioned from the abstract to immediately relevant. Midlevel practitioners in the specialty may soon outnumber physicians (if that has not already happened). Concierge and cash-only practices have proliferated. The care of sexual and gender minorities and, in particular, transgender individuals has emerged from the shadows, creating new perspectives about gender-affirming enhancements and administration of the iPLEDGE program. Second-generation sequencing, gene editing, and new approaches to gene therapy have transformed the field of clinical genomics. A whole new generation of social media-savvy practitioners has entered the workforce. Predatory open-access journals, unknown a decade ago, are now a daily fixture of dermatologists’ email inboxes. Maintenance of certification has become a reality for all but the oldest Board-certified dermatologists. Private equity-financed ownership and consolidation of private dermatology practices and dermatopathology labs is transforming the practice landscape in the United States. Diversification of the specialty workforce and patient population is occurring against the backdrop of racial unrest and unprecedented awareness of the need for equity, diversity, and inclusion in healthcare. For these and many other reasons, planning and production of a second edition of this book began in 2019. Readers will notice some changes in this edition beyond the addition of chapters that deal with ethical challenges of the changing landscape of medicine in general and dermatology, specifically. First, we have added two editors: Benjamin K Stoff, MD, MA and Jane Grant-Kels,

X Preface to the Second Edition

MD. The four co-editors have worked closely on a number of publications and AAD forums and panels on dermatoethics together, so this was a natural transition. At the suggestion of our publisher, Springer Nature, this edition has been formatted as a textbook to enhance its value to trainees. An introductory chapter on basic principles of bioethics has been introduced. Chapters now include teaching points and boxed content to highlight important concepts. Some chapters from the first edition have been updated by the original authors, while others have entirely new authors and content. Several chapters have been added to encompass topics that simply did not exist or were insignificant a decade ago. This book is not just for dermatology trainees and students. The material is also relevant to practicing clinicians and researchers alike. We have preserved the case-based format from the first edition. Learning ethical analysis is enhanced by using real-life situations. An undertaking of this scope could not be accomplished without the help and support of others. We again acknowledge the encouragement and foresight of our publisher’s senior editor, Grant Weston, with whom we have worked over the last 11 years. Anand Shanmugam, our assigned book project coordinator, served ably as the liaison between the editors, publisher, and authors, keeping us constantly aware of deadlines and shepherding each chapter to the finish line. Gobalakrishnan Venkataraman, our production project manager, oversaw the final editing and production from Word to proofs to the printed (or online) version you are now reading. We are especially grateful to our contributing authors, who enthusiastically embraced their subject material and graciously wrote and rewrote (often many times) their chapters to make this book so unique. Special thanks go to Bruce Thiers, MD (former Editor-inChief of JAAD and current AAD president) and Dirk Elston, MD (current Editor-in-Chief of JAAD), who were instrumental in launching the Dermatoethics Consultations section of the journal, from which much of the material in this book originated, and which acted as an incubator for academic interest in this discipline. Our students, residents, fellows, and colleagues have been a constant source of stimulation and wisdom, always encouraging us to question our own biases and beliefs and behave ethically and professionally. And finally, we acknowledge our spouses, children, parents, and grandchildren, who sacrificed hours of quality time during the writing and editing of this book, and to whom our gratitude and love know no bounds. Providence, RI, USA Farmington, CT, USA Philadelphia, PA, USA Atlanta, GA, USA

Lionel Bercovitch Jane M. Grant-Kels Clifford S. Perlis Benjamin K. Stoff

XI

Contents I Introduction 1

Foundations of Clinical Ethics����������������������������������������������������������������������  3 Benjamin K. Stoff

II Clinician 2

 are of Older Adults: Autonomy, Capacity and Duty C to Protect�������������������������������������������������������������������������������������������������������������������� 13 Anne L. Housholder

3

 enetic Medicine Arrives in the Outpatient Clinic: Ethical G Concerns for Dermatologists������������������������������������������������������������������������ 25 Anne L. Housholder

4

 ho Decides? Consent, Assent and Confidentiality W in Pediatric Dermatology Practice ������������������������������������������������������������ 39 Julia A. Siegel and Lionel Bercovitch

5

International Volunteering���������������������������������������������������������������������������� 49 Amy K. Forrestel

6

 ridging the Divide, Virtually: Ethics B of Teledermatology �������������������������������������������������������������������������������������������� 59 Ademide Adelekun, Monique A. Sager, and Jules B. Lipoff

7

 nsolicited Dermatologic Opinions: Ethical, Moral, U and Legal Issues ���������������������������������������������������������������������������������������������������� 69 Lionel Bercovitch

8

 haring Care with Physician Assistants and Nurse S Practitioners������������������������������������������������������������������������������������������������������������ 77 Clifford S. Perlis

9

The Ethics of Integrative Medicine������������������������������������������������������������ 85 Tess Engel, Vivian Y. Shi, and Raja K. Sivamani

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Cosmetic Dermatology and the Ethics of Enhancement ������������ 93 Ruby Kwak and Alexandra Charrow

11

Lying in Patient Care: Ethical and Moral Issues ��������������������������������105 Stephanie K. Fabbro

12

Therapeutic Non-Adherence ������������������������������������������������������������������������113 Stephanie K. Fabbro

XII Contents

13

 elf-Destructive Patients and Unreasonable S Care Requests����������������������������������������������������������������������������������������������������������123 Stephanie K. Fabbro and Lionel Bercovitch

14

 edical Errors, Disclosure, and Safety in Dermatologic M Surgery������������������������������������������������������������������������������������������������������������������������131 Shannon W. Zullo and Joseph F. Sobanko

15

 utonomy, Isotretinoin, and iPLEDGE: The Ethics of A Burdensome Regulation and Prescribing Teratogenic Medications��������������������������������������������������������������������������������������������������������������139 Leila Shayegan and Lionel Bercovitch

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Dermatoethics in Pregnancy ������������������������������������������������������������������������147 Hannah J. Chang and Lionel Bercovitch

III Professional 17

 rofessional Boundaries: Safeguarding P the Physician-­Patient Relationship ����������������������������������������������������������161 Brandon H. Krupp

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 eering into the Gift Horse: The Ethics of Gift-Giving and P Receiving in the Physician-Patient Relationship������������������������������169 Lionel Bercovitch

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Ethics of Treating Family Members ����������������������������������������������������������177 Sandra Osswald

20

Healthcare Ethics and Professionalism in Social Media ��������������185 Sophia M. Wolfe, Sophia S. Hu, Chandler W. Rundle, Gil S. Weintraub, and Robert P. Dellavalle

21

Workplace Romance in Dermatology������������������������������������������������������199 Steven Madsen, Lionel Bercovitch, and Jane M. Grant-Kels

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 thically Dealing with Differences: Cultural and Religious E Determinants of Healthcare, Extreme Political Views and Bigotry ������������������������������������������������������������������������������������������������������������������������209 Sarah D. Ferree, Alexandra Charrow, and A. Shadi Kourosh

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 thics in Caring for Sexual and Gender Minority E Patients ����������������������������������������������������������������������������������������������������������������������223 Connie J. Kha, Mark Luskus, and Howa Yeung

24

Feet of Clay: The Impaired Dermatologist��������������������������������������������233 Brandon H. Krupp

Contents

25

 he Ethics of Maintenance of Certification T in Dermatology������������������������������������������������������������������������������������������������������251 Benjamin K. Stoff

26

The Ethics of Inpatient Consultative Dermatology ������������������������259 Lauren M. Madigan and Lindy P. Fox

27

 he Ethical Responsibilities of Physicians During T Epidemics ������������������������������������������������������������������������������������������������������������������267 Madeline E. DeWane and Lionel Bercovitch

28

 thical Responsibilities to Economically Disadvantaged E and Marginalized Patients������������������������������������������������������������������������������277 Anne L. Housholder

29

The Ethics of Skin Cancer Screening ��������������������������������������������������������291 Benjamin K. Stoff and Jane M. Grant-Kels

IV Businessperson 30

 thical Issues Surrounding Private-Equity Involvement E in Dermatology������������������������������������������������������������������������������������������������������301 Madeline E. DeWane, Clifford S. Perlis, and Jane M. Grant-Kels

31

 rom Behind the Microscope: Ethical Considerations F in Modern Day Dermatopathology ����������������������������������������������������������317 Ifeoma U. Perkins and Jane M. Grant-Kels

32

Physician Advertising and Self Promotion ������������������������������������������333 Jonathan Kantor

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Dermatoethics: The Ethics of Concierge Medicine��������������������������341 Alexandra Charrow, Ruby Kwak, and Vinod E. Nambudiri

34

Medication Discount Programs ������������������������������������������������������������������349 Vignesh Ramachandran, Abigail Elizabeth Cline, and Steven R. Feldman

V

Educator, Trainee

35

The Ethics of Mentoring in Dermatology����������������������������������������������359 David William Brodell, Lindsey Brodell Dolohanty, Robert Thomas Brodell, and Jane M. Grant-Kels

36

 he Ethics of Service as a Department Chairperson T or Residency Director����������������������������������������������������������������������������������������369 Robert Thomas Brodell, Jeremy D. Jackson, and Jane M. Grant-­Kels

37

Ethical Issues in the Dermatology Match����������������������������������������������383 Madeline E. DeWane, Lionel Bercovitch, and Jane M. Grant-Kels

XIV Contents

38

 ermatoethical Challenges in Education of Medica D Students & Dermatology Residents: Opportunities at the Bedside ��������������������������������������������������������������������������������������������������������401 Ashley Myer, Cynthia Pathmathasan, and Eliot N. Mostow

39

 he Cost of Free Cosmetics: When Training T and Capitalism Collide��������������������������������������������������������������������������������������413 Travis W. Blalock

VI Scholar 40

Peering into Publication Ethics��������������������������������������������������������������������425 Michael A. Renzi, Jr. and Warren R. Heymann

41

Respect for Human Subjects: Ethics in Research Design������������433 Cory Kosche, Robin Rolader, and Howa Yeung

42

Conflicts of Interest ��������������������������������������������������������������������������������������������445 Clifford S. Perlis

Index ��������������������������������������������������������������������������������������������������������������� 453

XV

Contributors Ademide Adelekun, MD

Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA Lionel Bercovitch, MD

Department of Dermatology, Warren Alpert Medical School of Brown University, Providence, RI, USA Division of Pediatric Dermatology, Hasbro Children’s Hospital, Providence, RI, USA Travis W. Blalock, MD

Department of Dermatology, Emory University School of Medicine, Atlanta, GA, USA David William Brodell, MD

Department of Dermatology, University of Rochester School of Medicine and Dentistry, Rochester, NY, USA Robert Thomas Brodell, MD

Department of Dermatology, University of Rochester School of Medicine and Dentistry, Rochester, NY, USA Department of Dermatology, University of Mississippi Medical Center, Jackson, MS, USA Hannah J. Chang, MD

University of Pittsburgh School of Medicine, Pittsburgh, PA, USA Alexandra Charrow, MD

Department of Dermatology, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, USA Department of Dermatology, Harvard Medical School, Boston, MA, USA Abigail Elizabeth Cline, MD, PhD

Department of Dermatology, Center for Dermatology Research, Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC, USA Robert P. Dellavalle, MD, PhD

Department of Dermatology, University of Colorado School of Medicine, Denver, CO, USA Rocky Mountain Regional VA Medical Center, Denver, CO, USA

XVI Contributors

Madeline E. DeWane, MD

Yale New Haven Hospital, New Haven, CT, USA Lindsey Brodell Dolohanty, MD

Department of Dermatology, University of Rochester School of Medicine and Dentistry, Rochester, NY, USA Tess Engel, MD

School of Medicine, University of California – Davis, Sacramento, CA, USA Stephanie K. Fabbro, MD

Division of Dermatology, OhioHealth Riverside Methodist Hospital, Columbus, OH, USA Steven R. Feldman, MD, PhD

Department of Dermatology, Center for Dermatology Research, Wake Forest School of Medicine, Medical Center Boulevard, Winston-­Salem, NC, USA Department of Pathology, Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC, USA Department of Social Sciences & Health Policy, Wake Forest School of Medicine, Winston-Salem, NC, USA Sarah D. Ferree, MD

Department of Dermatology, Massachusetts General Hospital, Boston, MA, USA Boston University School of Medicine, Boston, MA, USA Amy K. Forrestel, MD

University of Pennsylvania, Department of Dermatology, Philadelphia, PA, USA Lindy P. Fox, MD

Department of Dermatology, University of California, San Francisco, San Francisco, CA, USA Jane M. Grant-Kels, MD

Department of Dermatology, University of Connecticut School of Medicine, Farmington, CT, USA Dermatology Department, University of Florida College of Medicine, Gainesville, FL, USA Warren R. Heymann, MD

Cooper University Hospital, Division of Dermatology, Camden, NJ, USA

Contributors

Anne L. Housholder, MD, MPH

Department of Dermatology, University of Cincinnati, Cincinnati, OH, USA Sophia S. Hu, BA

University of Colorado School of Medicine, Denver, CO, USA Jeremy D. Jackson, MD

University of Mississippi Medical Center, Jackson, MS, USA Jonathan Kantor, MD, MSCE, MA

Florida Center for Dermatology, PA, St Augustine, FL, USA Department of Dermatology, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA Connie J. Kha, MD

Morehouse School of Medicine, Atlanta, GA, USA Cory Kosche, MD

Rush Medical College, Rush University, Chicago, IL, USA A. Shadi Kourosh, MD, MPH

Department of Dermatology, Massachusetts General Hospital, Boston, MA, USA Brandon H. Krupp, MD

Department of Psychiatry and Human Behavior, Warren Alpert ­Medical School of Brown University, Charlestown, RI, USA Ruby Kwak, MD

Harvard Medical School, Boston, MA, USA Department of Dermatology, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, USA Jules B. Lipoff, MD

Department of Dermatology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA Mark Luskus, BA, MA

Department of Dermatology, Emory University School of Medicine, Atlanta, GA, USA Lauren M. Madigan, MD

Department of Dermatology, University of Utah, Salt Lake City, UT, USA

XVIII Contributors

Steven Madsen, MD

University of Connecticut School of Medicine, Department of Dermatology, Farmington, CT, USA Eliot N. Mostow, MD, MPH

Northeast Ohio Medical University (NEOMED), c/o Akron Dermatology, Akron, OH, USA Ashley Myer, MA

Northeast Ohio Medical University (NEOMED), Rootstown, OH, USA Vinod E. Nambudiri, MD, MBA

Department of Dermatology, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, USA Sandra Osswald, MD

Division of Dermatology and Cutaneous Surgery, Department of Medicine, UT Health San Antonio, San Antonio, TX, USA Cynthia Pathmathasan, BS

Northeast Ohio Medical University (NEOMED), Rootstown, OH, USA Ifeoma U. Perkins, MD

Department of Pathology, University of Colorado School of Medicine, Denver, CO, USA Clifford S. Perlis, MD, MBE

Department of Dermatology, Temple University Lewis Katz School of Medicine, Philadelphia, PA, USA Vignesh Ramachandran, MD

Department of Dermatology, Center for Dermatology Research, Wake Forest School of Medicine, Medical Center Boulevard, Winston-Salem, NC, USA Michael A. Renzi, Jr., DO

Cooper University Hospital, Division of Dermatology, Camden, NJ, USA Robin Rolader, MD

Department of Dermatology, Emory University School of Medicine, Atlanta, GA

Contributors

Chandler W. Rundle, MD

Department of Dermatology, University of Colorado School of Medicine, Denver, CO, USA Monique A. Sager, BA

Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA Leila Shayegan, MD

Columbia University Vagelos College of Physicians and Surgeons, New York, NY, USA Vivian Y. Shi, MD

Department of Dermatology, University of Arkansas for Medical ­Sciences, Little Rock, AR, USA Julia A. Siegel, MD

Department of Dermatology, Warren Alpert Medical School of Brown University, Providence, RI, USA Raja K. Sivamani, MD, MS, CAT

Department of Dermatology, University of California – Davis, Sacramento, CA, USA Department of Biological Sciences, California State University, Sacramento, CA, USA College of Medicine, California Northstate University, Elk Grove, CA, USA Pacific Skin Institute, Sacramento, CA, USA Zen Dermatology, Sacramento, CA, USA Joseph F. Sobanko, MD

Department of Dermatology, University of Pennsylvania, Philadelphia, PA, USA Benjamin K. Stoff, MD, MA

Department of Dermatology, Emory University School of Medicine, Atlanta, GA, USA Emory Center for Ethics, Atlanta, GA, USA Gil S. Weintraub, BA

Department of Dermatology, University of Colorado School of Medicine, Denver, CO, USA Rocky Mountain Regional VA Medical Center, Denver, CO, USA

XX Contributors

Sophia M. Wolfe, BS

University of Colorado School of Medicine, Denver, CO, USA Howa Yeung, MD, MSc

Department of Dermatology, Emory University School of Medicine, Atlanta, GA, USA Shannon W. Zullo, MD, MS

Department of Dermatology, University of Pennsylvania, Philadelphia, PA, USA

1

Introduction Table of Contents Chapter 1

Foundations of Clinical Ethics – 3

I

3

Foundations of Clinical Ethics Benjamin K. Stoff Contents Introduction

–4

What Is Ethics? – 4 What Ethics Is NOT – 5 L aw – 5 Emotions – 5 Religion – 5

What Is an Ethical Dilemma? – 5 Major Moral Theories – 6  onsequentialism (Outcome-Based Ethics), C Including Utilitarianism – 7 Virtue-Based Ethics – 7

Other Moral Theories and Principles – 8  rinciplism – 8 P Ethics of Caring and Relationships (Feminist Ethics) – 9

Teaching Ethics to Trainees – 9 References – 10

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_1

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nnLearning Objectives 1. Define ethics and ethical dilemmas. 2. Explain basic aspects of the major moral theories, including deontology, consequentialism (particularly utilitarianism), and virtue-based ethics. 3. Describe the elements of principlism, including respect for autonomy, non-­ maleficence, beneficence, and justice.

>>Points of Emphasis 55 Ethics is a process for determining right and wrong using argumentation based on moral theory. 55 Ethics is related to but distinct from law, emotion, and religion. 55 Major moral theories include deontology (duty-based ethics), consequentialism (outcome-based ethics) and virtue-based ethics, which focuses on the traits of the actor rather than the act. 55 Principlism is the predominant framework for ethical analysis in Western healthcare systems and includes respect for autonomy, non-maleficence, beneficence, and justice. 55 An ethics curriculum has been created for dermatology trainees, which recommends hour-long, case-based sessions every other month to cover core topics followed by elective topics.

Introduction Ethics is the foundation of not only clinical practice but also moral life. Like other abstract concepts, ethics may be familiar intuitively but difficult to define precisely and distinguish from related concepts like law, emotion, and religion. This chapter will provide a brief overview of essential terms and concepts in bioethics that will be deployed throughout the remainder of the book. The chapter will close with resources that will aid interested readers, particularly educators, in teaching bioethics to trainees.

What Is Ethics? At its most basic, ethics represents a method for determining how individuals ought to act based on concepts of right and wrong. While morality focuses on what is right or wrong, based on accepted norms of behavior, ethics focuses on why an action is right or wrong [1]. Ethical analysis, therefore, is a process for making judgments about actions. It requires constructing arguments grounded in moral theory, not merely declarations based on intuition. Normative ethics refers to decisions about which moral norms or ethical arguments we should accept and why [2]. For example, should our healthcare system embrace a utilitarian or virtue-based approach to accepting Medicaid beneficiaries as patients? Practical or applied ethics involves the application of these norms to particular problems or cases [2]. For instance, when might pointing out a potential melanoma to a stranger be permissible, or perhaps even required, for a dermatologist? Moral relativism suggests that rightness or wrongness of a particular action is context dependent, determined by the moral code of a given culture, which may differ from another [3]. Whereas moral absolutism endorses a universal code that applies to all cultures, implying that some acts are always wrong no matter the circumstances [3]. A positive obligation represents a requirement to actively uphold an individual’s right to something [3]. For example, dermatology providers must actively support a patient’s right to be informed about reasonable treatment options for a newly diagnosed melanoma. In contrast, a negative obligation requires the avoidance of interfering with an individual’s right to something [3]. To continue the same example, once a dermatologist has explained treatment options for melanoma, she should not interfere with the patient’s right to make a reasonably autonomous decision about which treatment best aligns with the patient’s values. Moving beyond simple obligations, supererogation involves actions well outside of what is required, that is, “above and beyond the call

5 Foundations of Clinical Ethics

of duty.” [3] An example of one of these praiseworthy feats would be a dermatologist volunteering her time to organize or regularly staff a free clinic for indigent patients.

What Ethics Is NOT Law Although law and ethics often overlap, they differ in fundamental ways. Laws are enacted and enforced by the state in order to protect public welfare [4]. The formation of laws may be influenced by factors that are not moral in nature, including feasibility, efficiency, political pressure, and precedent [2]. The judgment of an act as ethically wrong does not necessarily imply that public policy or law should prohibit it and vice versa. For example, many actions that are not ethically defensible in general, such as infidelity to a spouse or lying to a colleague, are not illegal. On the other hand, civil disobedience to support equal rights for a marginalized patient group may be ethically justifiable behavior that is not strictly legal. >>Point of Emphasis Many actions that are not ethically defensible in general, such as infidelity to a spouse or lying to a colleague, are not illegal. On the other hand, some ethically justifiable actions or behavior may not be strictly legal.

Emotions In daily life, most of our ethical decisions are made rapidly, based on intuition rather than deep analysis. Moral emotions guide these decisions and represent pro-social responses that uphold the welfare of the group rather than the individual [5]. However, sometimes these emotions motivate conflicting courses of action. For example, a patient with severe hidradenitis suppurativa shows up an hour late for an appointment, while patients who are on time are already waiting. Our moral emotional responses may include compassion

for the patient, which would tend to permit him to keep his appointment. We may also feel frustration at the impact accommodating the late patient will have on other patients with appointments, which would tend to require rescheduling his appointment. Situations in which moral emotions motivate conflicting courses of action often require deliberative reasoning, such as ethical analysis, to resolve.

Religion Religious traditions often advocate for ethically appropriate behavior. Indeed, religious thought underlies much moral theory. For example, natural law theory of St. Thomas Aquinas upholds the intrinsic value of human life, knowledge, rationality, and sociability. These values are reflected in many contemporary moral frameworks, including principlism [3]. However, the discipline of bioethics has diverged from religion and become increasing secular since the twentieth century, with discourse deriving from and applying to those who observe religious traditions and those who do not. That is, the current study of ethics has a more limited relationship with religion than in the past. Contemporary ethicists may reside in non-religious institutions, draw arguments from lay sources, and make judgments about actions and policies that are not faith-based [6].

What Is an Ethical Dilemma? The term ‘ethical dilemma’ lacks a unifying definition, although several proposals are informative for the purposes of this book. Duval et al. describe a choice between two or more seemingly equally desirable (or undesirable) alternative courses of action, each of which may be justified by a moral value [7]. Beauchamp and Childress define an ethical dilemma as a moral obligation demanding or seeming to demand that a person enact two or more incompatible actions [2]. This incompatibility may arise because the arguments for and against a given action do not conclusively indicate that one is superior or because a per-

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son is morally obligated to perform two mutually exclusive acts [2]. Importantly, an ethical dilemma is not merely a debate over medical facts, law, or compliance, although arguments may draw from these domains. Most fundamentally, it represents a circumstance in which there is no clear, right course of action because competing possibilities seem ethically justifiable (or unjustifiable). >>Point of Emphasis An ethical dilemma exists when there is no clear, right course of action because competing possibilities seem ethically justifiable (or unjustifiable).

Major Moral Theories This section will introduce major moral theories and principles that are referenced throughout the book (. Tables 1.1 and 1.2). Discussion of each theory or principle will include philosophers most closely associated with it, definitions, applications in healthcare, and shortcomings or limitations. In-depth discussion of all moral theory is well beyond the scope of this chapter. However, interested readers are encouraged to consult excellent texts on the topic [3]. Associated with moral philosopher Immanuel Kant, deontology or rules-based ethics defines right action by the degree to which it adheres to generalizable moral obliga 

tions (e.g. duties or rules) [3]. To be generalizable, the rule should apply to all individuals in all circumstances. According to deontological ethics, humans have intrinsic worth, should act rationally, and make free choices [3]. Unlike

..      Table 1.1  Major moral theories with associated questions for determining right action, applications, and limitations Moral theory

Question for determining right action

Application in healthcare

Limitations

Deontology

What best conforms to established, universal rules?

Codes of conduct

No emphasis on outcomes

Utilitarianism

What does the most good for the most people?

Public health policy

Wrong behavior justified by good outcomes; difficult calculations

Virtue-­ based ethics

What would a virtuous person do?

Mission statements and mentoring

Determining actions of hypothetical virtuous person

..      Table 1.2 Principlism Principle

Definition

Application in healthcare

Limitations

Respect for autonomy

Patient self-­ determination

Informed consent; decisional capacity; surrogacy

Public safety; limited resources; irrational beliefs

Non-­ maleficence

Avoiding harm of patients

Codes of conduct; negligence; ‘risk-benefit’ profile

Harm required to do good; difficult to define and measure

Beneficence

Doing good for patients

Central goal of medicine; ‘risk-benefit’ profile

Limited resources; patient preferences; what is optional vs. required

Justice

Fair access to benefits and burdens

Distribution of limited resources; access to care; global health

Choosing a distribution strategy; deciding who is owed what

7 Foundations of Clinical Ethics

consequentialist moral theories (see below), deontology focuses on obeying rules, not necessarily measuring outcomes. In clinical bioethics, deontology forms the basis for rules of behavior, like prohibiting dermatologists (or other healthcare providers) from entering into romantic relationships with current patients. It underlies codes of ethics and professionalism for healthcare systems and professional organizations, such as the American Academy of Dermatology (AAD) [8]. Shortcomings of deontology in healthcare include an over-emphasis on rules, which may, in some cases, lead to suboptimal patient outcomes. For example, adherence to strict rules enforcing patient confidentiality may limit data-sharing platforms, which could benefit clinical research and lead to important scientific discoveries. Deontology also offers little guidance for determining which set of rules to follow and when or how to reconcile apparent conflicts between existing rules.

Consequentialism (Outcome-Based Ethics), Including Utilitarianism In outcome-based ethics, the rightness or wrongness of actions depends not on adherence to rules but rather on outcomes. Derived from the work of British philosopher John Stuart Mill, utilitarianism is the most influential form of consequentialism [3]. According to utilitarianism, the right course of action is the one with the best overall consequences, promoting the most aggregate good for the most people [3]. What constitutes good depends on the context and may include health, knowledge, wealth, fulfillment, relationships, or other measures. The motives of actions are not relevant, and all people are treated equally. In healthcare, utilitarianism often drives public health policy [2]. For example, utilitarian reasoning would support a melanoma screening program which focuses on high-risk populations because of a higher anticipated overall health impact than a screening pro-

gram of all people or a random sample of people for which the aggregate health impact would be less. Although commonly deployed in healthcare, utilitarianism has several important limitations. The means used to reach desirable outcomes are not important, only the outcomes themselves. Therefore, mistreating a few people for the good of the many is justifiable, even required, according to utilitarianism. There are also significant challenges associated with defining what is good in a particular context, specifying relevant stakeholders, and quantifying how actions impact those stakeholders.

Virtue-Based Ethics Based on the work of Aristotle, virtue-based ethics focuses on the actor or agent rather than the act, a major distinction from deontology and utilitarianism [3]. It emphasizes morally desirable character traits and judgments. To be morally good according to virtue ethics, an individual must have the right motives for and appropriate emotional responses to actions. If individuals are virtuous, that is, they are more likely to make ethically-appropriate decisions. In ethical case analysis, virtue ethics asks the question, what would a virtuous person do in this set of circumstances? For example, an early-career dermatologist faced with a challenging patient may decide how to act not based on rules or outcomes but on how his former residency program director might act in a similar situation. Mission statements, career and character development programs, and mentoring relationships borrow heavily from virtue-­ based ethics. Criticisms of virtue-based ethics include difficulty in determining how a hypothetical virtuous person would act in a particular circumstance. Identifying the most important virtues, resolving conflict between virtues, and deciding what is mandatory versus aspirational are also challenges for virtue-based ethics.

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Other Moral Theories and Principles Principlism Principles are bridges between general moral theories, like those above, and specific judgments of right or wrong in particular cases [2]. That is, principles are comprehensive moral norms of behavior derived from theory that provide a framework for ethical analysis of specific cases. For example, a dermatology practice manager who generally subscribes to utilitarianism may find that the theory is not specific enough to generate office policy about accepting same-day referrals from a nearby emergency department. So, she uses principles, like beneficence and justice, as a framework to flesh out specifics of the policy. Far and away, the most influential of the moral principles in healthcare derives from the work of Beauchamp and Childress [2]. These four principles – respect for autonomy, beneficence, non-­maleficence, and justice – are the foundation of education and consultation in bioethics in Western healthcare. According to principlism, autonomy reflects (1) freedom from undue influence and (2) capacity to understand and act [2]. In healthcare, autonomy underlies concepts like informed consent, decisional capacity, and surrogate medical decision making. The phrasing “respect for” autonomy suggests that, when possible, deference should be paid to autonomy but that it should not dominate other principles unchecked. Indeed, critics of principlism have argued that autonomy has become the primary principle in Western medical systems [6]. As readers will see throughout subsequent chapters of this book, there are common reasons for which patient autonomy may be limited, including public safety, limited resources, irrational patient beliefs, requests for nonbeneficial care, and when individuals cannot act autonomously (e.g. children). Further, the concept of autonomy shows bias against some non-western cultures, which value communal decision making over individual decision making [6].

Non-maleficence generally prohibits healthcare providers from intentionally harming patients [2]. In contrast to beneficence (see below), rules of behavior based on non-­ maleficence are often obligatory, as in the commonly-­cited phrase “Do no harm.” Codes of conduct in healthcare, the medico-legal concept of negligence, limitations of individual choice or public policy, and ‘risk-benefit’ profiles are all rooted in non-maleficence. Criticisms of non-­maleficence include that, in some cases, causing some harm to patients may be necessary to achieve good. For example, using dapsone in a patient with severe dermatitis herpetiformis causes anemia but also achieves skin disease remission. In addition, there are challenges associated with defining and measuring harm in particular circumstances. Promoting the welfare of patients, beneficence, represents the most fundamental rationale for medicine in general [2]. Beneficence underlies most of our activities as healthcare providers. Like non-maleficence, beneficence forms a major component of the ‘risk-benefit’ profile commonly deployed in medical decision making. Beneficence also justifies limitations on patient autonomy. For example, a patient request for a new biologic drug for very localized psoriasis may be declined by a dermatologist because she does not expect there to be sufficient benefit from the drug. Shortcomings of beneficence are materially similar to those for non-maleficence. Definitions and metrics for benefit may be scarce, particularly for skin diseases. Severe resource limitations may also prohibit provision of the most beneficial medical interventions. Finally, unlike non-­ maleficence, beneficence does not often specify clearly what actions are optional and what are mandatory. For example, if a dermatologist notices a concerning pigmented lesion on a stranger in public, should it be voluntary or obligatory to bring it to the stranger’s attention? There are nuanced differences between non-­maleficence and beneficence  – such as a higher level of obligation, impartiality, and consequences for violation associated with non-maleficence. In practice, however, these

9 Foundations of Clinical Ethics

principles often function on a spectrum when analyzing cases. Fairness in how benefits and burdens are distributed in healthcare defines the bioethical principle of justice. Applications of justice in healthcare include distribution strategies for limited resources (e.g. based on disease severity, impact, equality, social standing, or free market), participation in global health, and access to healthcare in general. Challenges to the principle of justice derive from difficulty in determining which distribution strategy is most fair and which groups of people should be included or excluded from those who are owed something by the healthcare system. >>Points of Emphasis 55 Autonomy in healthcare refers to the freedom of individuals possessing decision making capacity to make their own healthcare decisions, without undue influence having been presented information a reasonable person would need to make these decisions. Autonomy underlies concepts like informed consent, decisional capacity, and surrogate medical decision making. 55 Promoting the welfare of patients, beneficence, represents the most fundamental rationale for medicine in general and underlies much of our activities as healthcare providers. 55 Non-maleficence, the principle of doing no harm, generally prohibits healthcare providers from intentionally harming patients. Codes of conduct in healthcare, the medico-legal concept of negligence, limitations of individual choice or public policy, and ‘risk-benefit’ profiles are all rooted in non-maleficence. 55 The principle of justice refers to fairness in how benefits and burdens are distributed in healthcare. Applications of justice in healthcare include distribution strategies for limited resources (e.g. based on disease severity, impact, equality, social standing, or free market), participation in global health, and access to healthcare in general.

 thics of Caring and Relationships E (Feminist Ethics) Associated with feminism and the work of Carol Gilligan and Nel Noddings, the ethics of caring diverges from other moral theories and principles through its focus on relationships [2]. According to the ethics of caring, decisions should be guided by compassion, empathy, emotional connectedness and appropriate communication. That is, caring for individuals in need often overrides cold notions of justice and utility. The ethics of caring often grounds compassion, empathy, communication, and teamwork models in healthcare. The concept has been criticized for perpetuating the isolation experienced by those who lack relationships and for its over-emphasis on selflessness and emotionality, which may contribute to burnout among healthcare providers.

Teaching Ethics to Trainees The American Board of Dermatology commissioned a subcommittee to develop a curriculum in bioethics for dermatology residents [9, 10]. By consensus opinion, the subcommittee identified six core content domains in bioethics for dermatology residents, including foundations of bioethics, professionalism, educational ethics, ethics of the business of dermatology, research and publication ethics, and clinical ethics. Across the core domains, the subcommittee selected 15 essential topics and 13 optional topics, along with relevant readings, including many from the first edition of this book. The subcommittee recommends that the 15 essential topics are covered over a three-­year residency cycle with sessions every other month of approximately 60 minutes duration. Once the 15 essential topics are completed, the program may select from the optional topics or substitute other pressing topics as needed. A case-­based format is favored, with some cases derived from trainees and others from faculty [11–13]. Teaching ethics and professionalism remains challenging for many reasons, including lack of time, expertise among faculty, and validated

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outcome measures for assessing the impact of educational programs. Program directors should also be aware of the milestones related to ethics in dermatology from the Accreditation Council for Graduate Medical Education [14]. Other resources for ethics and professionalism education in dermatology are available through the AAD.  For example, the AAD maintains a resource center for professionalism and ethics on its website, which lists thought leaders on ethics topics and key resources for further reading [15].

References 1. Lo B. Resolving ethical dilemmas: a guide for clinicians. 4th ed. Philadelphia: Wolters Kluwer Health/ Lippincott Williams & Wilkins; 2009. x, 369 p. 2. Beauchamp TL, Childress JF. Principles of biomedical ethics. 6th ed. New  York: Oxford University Press; 2009. xiii, 417 p. 3. Timmons M.  Moral theory: an introduction, Elements of philosophy. 2nd ed. Lanham: Rowman & Littlefield Publishers; 2013. xi, 367 pages. 4. Vaughn L.  Bioethics: principles, issues, and cases. 2nd ed. New  York: Oxford University Press; 2013. xiii, 753 p. 5. Haidt J.  The moral emotions. In: Davidson RJ, Scherer KR, Goldsmith HH, editors. Handbook of affective sciences. Oxford, UK: Oxford University Press; 2003. p. 852–70. 6. Wolpe PR. The triumph of autonomy in American bioethics: a sociological view. In: DeVries R, Subedi

J, editors. Bioethics and society: constructing the ethical enterprise. Upper Saddle River: Prentice Hall; 1998. p. 8–59. 7. DuVal G, Clarridge B, Gensler G, Danis M.  A national survey of U.S. internists’ experiences with ethical dilemmas and ethics consultation. J Gen Intern Med. 2004;19:51–8. 8. American Academy of Dermatology. AAD code of medical ethics for dermatologists. [cited 2019 May 16]. Available from: https://www.­aad.­org/Forms/ Policies/Uploads/AR/AR%20Code%20of%20Medical%20Ethics%20for%20Dermatologists.­pdf. 9. Stoff BK, Grant-Kels JM, Brodell MD, Paller AS, Perlis CS, Mostow E, et  al. Introducing a curriculum in ethics and professionalism for dermatology residencies. J Am Acad Dermatol. 2018;78:1032–4. 10. Dermatoethics: recommended topics for 3-year dermatoethics curricular cycle. [cited 2019 June 18]. Available from: https://www.­abderm.­org/residentsand-fellows/dermatoethics.­aspx. 11. Kon AA.  Resident-generated versus instructor-­ generated cases in ethics and professionalism training. Philos Ethics Humanit Med. 2006;1:E10. 12. Opel DJ, Olson ME.  Bioethics education and resources. Pediatr Rev. 2012;33(8):370–3. 13. Bercovitch L, Long TP.  Dermatoethics: a curriculum in bioethics and professionalism for dermatology residents at Brown Medical School. J Am Acad Dermatol. 2007;56:679–82. 14. Accreditation Council for Graduate Medical Education. The dermatology milestone project. [cited 2019 June 20]. Available from: https://www.­acgme.­org/Portals/0/PDFs/Milestones/DermatologyMilestones.­pdf. 15. American Academy of Dermatology. AAD professionalism and ethics resource center. [cited 2019 June 20]. Available from: https://www.­aad.­org/form/ ethicspledge/.

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Clinician Table of Contents Chapter 2 Care of Older Adults: Autonomy, Capacity and Duty to Protect – 13 Chapter 3 Genetic Medicine Arrives in the Outpatient Clinic: Ethical Concerns for Dermatologists – 25 Chapter 4 Who Decides? Consent, Assent and Confidentiality in Pediatric Dermatology Practice – 39 Chapter 5 International Volunteering – 49 Chapter 6 Bridging the Divide, Virtually: Ethics of Teledermatology – 59 Chapter 7 Unsolicited Dermatologic Opinions: Ethical, Moral, and Legal Issues – 69 Chapter 8 Sharing Care with Physician Assistants and Nurse Practitioners – 77 Chapter 9 The Ethics of Integrative Medicine – 85 Chapter 10 Cosmetic Dermatology and the Ethics of Enhancement – 93 Chapter 11 Lying in Patient Care: Ethical and Moral Issues – 105 Chapter 12 Therapeutic Non-Adherence – 113

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Chapter 13 Self-Destructive Patients and Unreasonable Care Requests – 123 Chapter 14 Medical Errors, Disclosure, and Safety in Dermatologic Surgery – 131 Chapter 15 Autonomy, Isotretinoin, and iPLEDGE: The Ethics of Burdensome Regulation and Prescribing Teratogenic Medications – 139 Chapter 16 Dermatoethics in Pregnancy – 147

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Care of Older Adults: Autonomy, Capacity and Duty to Protect Anne L. Housholder Contents Discussion – 14 Conclusion – 22 References – 23

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_2

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nnLearning Objectives

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1. Recognize the types of decision making that patients engage in. Identify ways to support patient and family’s decision making. 2. Identify patients at risk of decisional incapacity. Increase dermatologist’s awareness and ability to perform capacity assessments during clinical encounters. 3. Recognize the appropriate roles for surrogate decision makers. 4. Increase awareness of elder abuse and ethically appropriate responses to disclosures of possible abuse.

Discussion Medical ethicists have a particular duty to address obligations of the health care system towards vulnerable populations. Although all people are “at risk” of medical harm, certain populations have an increased need for ethical vigilance to be sure that their personhood and best interests are served. Each vulnerable population faces risks that are unique to that population and requires particular types of vigilance. Children are vulnerable because they have not yet developed sufficiently to make medical decisions for themselves; they need medical decisions made in their best interests. Incarcerated persons have had much of their voluntariness taken from them; they need to be protected from coercion. Older adults represent a particular category of potentially vulnerable persons, with a particular need for ethical attention. Patients who are currently in their 70s, 80s and 90s have personal experience with the changes that occurred in medicine as it related to patient autonomy in the twentieth century. They may have experienced both very paternalistic medicine and the move towards autonomy coming out of the civil rights era and the AIDS epidemic. These older adults often have developed strong personal autonomy. They may desire to live independently, to not have many medical interventions, or to “do everything.” However, particularly at the

end of life, many older adults will lose the cognitive capacity to make medical decisions for themselves. Physician facilitation of patients’ informed consent is a fundamental ethical requirement for any treatment, whether medical or surgical [1]. The standards for informed consent require that patient be free from coercion, have medical decision making capacity, and be given adequate information regarding the nature, purpose, risks, benefits, and alternatives to the proposed treatment (7 Box 2.1). Caring for older adults requires careful attention to each element of informed consent. Older adults often rely on their caregivers and family members. It is important to make sure that older adults are not being coerced into medical decisions by their caregivers. Physicians must determine the medical decision capacities of older adults. Importantly, dermatologists often see patients episodically over many years and may be tempted to assume that older adults have maintained the cognitive capacities that the dermatologist remembers of them. However, older adults may experience cognitive decline relatively rapidly and should be reassessed carefully at each therapeutic encounter. Finally, physicians must provide adequate information about the proposed treatment; however, what constitutes a reasonable alternative may depend on a patient’s unique situation. The reasonableness of non-intervention or minimal intervention may be very different in a 70-year-old as opposed to a 97-year-old. Dermatologists should apply the standards of informed consent appropriately to their older adult patients.  

Box 2.1 Informed Consent to Treatment, Adapted from Applebaum [2] Informed consent requires patients: 1. Be free from coercion 2. Have medical decision making capacity 3. Be given adequate information regarding the nature, purpose, risks, benefits, and alternatives to the proposed treatment.

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Dermatologists should accurately assess decisional capacity in older adults any time a therapeutic decision needs to be made. Although incapacity to make medical decisions is most prevalent in hospitalized patients, decisional capacity deficits in outpatients may be overlooked. In one meta-analysis of medical decision making capacity in older individuals, 2.8% of older adults who were considered healthy “controls” failed to demonstrate capacity [1]. Additionally, 44% of nursing home residents, and 54% of Alzheimer’s disease patients lacked capacity [1]. These patients are often seen in outpatient dermatology clinics. Unfortunately, in this study physicians recognized incapacity in only 42% of the patients identified as lacking capacity by validated measures [1]. From these data, it is clear that outpatient dermatologists should neither assume that nursing home residents and patients diagnosed with Alzheimer’s disease lack capacity nor that healthy older adults possess capacity. Dermatologists, like all physicians, should assess older adult patients for their capacity to make medical decisions when needed. Capacity requires that the patient understand the relevant information, appreciate their situation, use reasoning to make a decision, and communicate that decision (7 Box 2.2). The capacity to make medical decisions is specific to each therapeutic decision and a necessary part of informed consent for any procedure. Assessing capacity requires that physicians explore the patient’s understanding of the procedure in their own words and evaluate their decision making. Patients may use reasoning that the physician does not share, for example religious belief; however, their reasoning should be consistent with their values and beliefs. Capacity assessments can occur concurrently with discussions of therapeutic options and reaffirmed in the consent procedure. The dermatologist must actively explore the patient’s understanding and reasoning using open questions with the patient restating their understanding in their own words.  

Box 2.2 Capacity Determination Adapted from Applebaum [3] Capacity to make medical decisions is satisfied, if the patient: 1. Understands the relevant information about the proposed diagnostic tests or treatments 2. Appreciates their situation, including their own values and assessment of the current medical situation 3. Uses reason to make a decision 4. Communicates their choice

Dermatologists have the responsibility for determining what capacity a particular procedure or treatment requires. A patient may have the capacity to consent to a minor procedure such as a biopsy but lack the capacity to process the information necessary to make decisions regarding more complex procedures, for example Mohs micrographic surgery versus wide local excision for a malignant lesion. Dermatologist should be aware that patients with diminishing capacity may use agreeableness as an avoidance strategy. Although doctors are often more aware of capacity deficits when a patient disagrees, agreeable patients may also not be adequately understanding and deciding for themselves. It is advisable in this situation to look for trusted individuals in the patient’s life to support their decision making. When facing diminishing capacity, the most important question for patients is not, “What do you want to do?” but “Who do you want to help you make this decision?” Supported decision making, with a loved one present and involved in the decision, may be appropriate for some patients. Additionally, older adults exhibit a spectrum of desired participation in medical decision making. Some patients want to be actively involved in decision making and other patients want to do whatever their doctor thinks is best. Unfortunately, there are

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limited data on decision-making desires in dermatological conditions and cultural differences may limit the generalizability of international data. In a population of adults 65 or older preparing for outpatient hand surgery, 81% preferred to have an active role in medical decision making [4]. Active decision making includes fully autonomous decision and shared decision making, where physicians help facilitate the patient’s decision making. Overall, 46% of these patients reported a desire for shared decision making; however, 16% preferred to defer to their physician’s judgment [4]. Older patients are more likely to desire physician-led decision making when they have more than four chronic medical conditions [5]. Additionally, patients who exhibit depressive symptoms are more likely to prefer physician-led decision making [6]. Physicians should identify the decision-making framework the patient desires and help to facilitate a positive experience for that patient within their framework. 55 Patient’s medical decision making exists on a spectrum from passive (deferring totally to their physicians) to active (fully autonomous). 55 Shared decision making describes physicians and patients participating together in decision making. 55 Supported decision making describes identifying family members, whom the patient trusts, to help in medical decision making.

Although physicians cannot force patients into a particular type of decision making, there are ways to help older adults make medical decisions. In the study of outpatient hand-surgery participants, approximately 50% of patients would rely on a family member to help make medical decisions with them [4]. Older patients also reported that additional time with their physician and additional informational materials would be helpful [4]. Older patients may have visual and auditory deficits that may contribute to false perceptions of incapacity [7]. Speaking slowly rather than simply louder may be preferable. Some

Risk of Dying

OPTIMAL DECISION Benefits + Harms of treatment

Values and Preferences

..      Fig. 2.1  Venn diagram of patient decision aid from Tan [8]

older patients have adapted some elements of lip reading to help, so physicians should position themselves within eyeline. “Patient decision aids” are growing in popularity to help physicians and patients share in decision making. In dermatology, there are several patient decision aids available for diseases such as psoriasis and acne [8, 9]. Relevant to the care of older adults, a simple decision tree has been proposed for basal cell carcinomas occurring in individuals with less than oneyear life expectancy [10]. In these patient decision aids, physicians and patients are given the opportunity to weigh the various factors that go into their decisions. Even in the case of a low-­risk basal cell carcinoma in a patient with limited life expectancy, the decision aid is descriptive of what options are available and reasonable; it is not prescriptive about which treatment must be pursued. Particularly for patients with complex co-­morbid conditions and limited life expectancies, decision aids may help dermatologists, patient and families weigh the relative risks and benefits in a more orderly and thorough manner. Good decision aids help clinicians and patients clarify the important features of the decision to be made. The physician and patient together will weigh the benefits and harms of the treatment with the values and preferences of the patients. . Figure  2.1, adapted from Tan et  al. [11], represents graphically the intersecting con 

17 Care of Older Adults: Autonomy, Capacity and Duty to Protect

cerns that patients and physicians should address in deciding on a best course of action. When older adults have lost the capacity to make decisions for themselves, they may require a surrogate decision-maker. The patient may have formally designated a Health Care Power of Attorney (POA) to make decisions for them. POAs only come into effect when patients are not able to make decisions for themselves. Few patients have been declared legally incompetent by a judge; these patients have a court-assigned guardian to make decisions for them. When patients are unable to make decisions for themselves but do not have a POA, state laws govern the order of decisionmakers, called surrogates [12]. Additionally, the surrogate decision making laws may only govern withdrawal of life sustaining treatment decisions but not other medical decisions. Misconceptions around POAs and surrogacy abound among patients and their families; dermatologists should help patients and families correct any misconceptions around when and for what decisions a POA exists. When a patient lacks decision making capacity, and an appropriate surrogate decision maker is available in person or by phone, dermatologists should help the surrogate make appropriate decisions. Surrogate decision making for children and adults who have never had the capacity to make decisions relies on the best interest standard; although this has been expanded to include respect for the patient’s assent for mature minors. The best-interest standard assumes that there are better and worse options for any patient in a similar situation but that all patients in similar situations are similar. Surrogate decision makers for incapacitated adults, who have previously had capacity, traditionally are asked to use “substituted judgment.” They are asked to imagine what this particular patient with all of his or her unique views would want if they could make the decision. Substituted judgement does not assume that similar adult patients would make similar decisions. The problems with this type of decision making have been well documented. Studies have shown surrogates accurately predict patient’s desires only

68% percent of the time [13]. Acting as a surrogate has been shown to increase feelings of anxiety and regret in family members [14]. Additionally, both surrogates and physicians will make decisions that are less risky than the decisions they would make for themselves [15]. As with their own decision making styles, patients may vary in how much they want their loved one to rely on their understanding of the patient’s wishes vs relying on the physician’s judgments [16]. Many, but not all, patients want shared decision making between their surrogates and their physicians. It may be helpful to ask surrogates about how reliant on physician guidance their loved ones have been in the past. 55 When patients have lost decision making capacity, an appropriate surrogate decision-maker should be identified. 55 Patients who have lost the capacity to make medical decisions may still have the capacity to identify surrogates. 55 Surrogate decision-makers are asked to use substituted judgment: to imagine what this patient would want, were they able to make the decision themselves.

Ethical engagement with older adults’ decision making can be time consuming. Assessing a patient’s decision making capacity is an interactive engagement with their comprehension and their reasoning. Finding an appropriate surrogate decision maker can be time consuming when patients arrive unaccompanied from nursing homes. Older adults’ vulnerability derives from the risk that their rights and wishes will be overlooked, in part due to the extra time it can take to affirm them. It is the ethical responsibility of each dermatologist to make sure that older adult patients’ abilities to make decisions is supported and their wishes are being respected when they lack that ability. As we will see in the following cases, supporting ethical decision making in older adults requires patience, effort and skill.

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Case Scenarios

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Case 1 A 75-year-old man currently resides in a nursing home. He is dropped off at your clinic for his visit by a shuttle service. The paperwork does not indicate whether he has a health care proxy. He is not sure why he is at the clinic, but says, “I think they saw something on my back that they are worried about. But I don’t have any pain, so I don’t know why I am here.” You discover a large blue to black non-ulcerated nodule that you are concerned is melanoma. You would like to perform an excisional biopsy but are unsure whether the patient can consent to treatment.

Case 2 Two daughters bring in their 85-year-old mother, who has a long history of nonmelanoma skin cancers and very fragile skin. She has had the lesions treated by many modalities but complains that the lesions on her legs take a long time to heal, particularly when they are treated with electrodessication and curettage. She now has several moderately thick lesions on her anterior shins that are likely hypertrophic actinic keratoses or superficial squamous cell carcinomas and several lesions on the calves that appear to be actinic keratoses. You discuss your findings with the patient and her daughters. The patient says, “I don’t want any more sores that don’t heal. I am too old for this. If you can do something else, fine, but no more sores.” One daughter agrees with her mother saying, “You have been through so much with Dad dying last year, you don’t need any more pain.” The other says, “Now, Mom, these lesions are just going to get worse and worse. They could grow into your bones and you could die from that. You should definitely have them all cut out right now!” You are worried that the situation might escalate and need to help the family reach a reasonable plan.

Case 3 You see a 90-year-old woman who lives in a nursing home. She is very frail and has late-stage Alzheimer’s disease, diabetes and hypertension. Her daughter, who is her healthcare POA, accompanies her. Initially, she had scaling with crust on her scalp, which had been present for several months and did not respond

to high potency topical steroids and anti-dandruff shampoos. She now has crusted lesions on her lips and mouth and upper back, which are increasing in number and causing her pain. She is not eating or drinking as much due to the pain. You perform biopsies, including direct immunofluorescence, which show pemphigus vulgaris. Included in her medication list is captopril. At your direction, her primary-care physician (PCP) changed the captopril to another anti-­hypertensive. You are considering starting highdose prednisone but are concerned about the risks and benefits and how to properly weigh them in discussion with the patient and her daughter.

Case 4 As a private practice general dermatologist, you have a long-standing relationship with both a 77-year-old woman with multiple sclerosis and her husband. Both patients have put on examination gowns and are ready to be examined. During your initial inquiry into the wife’s health, she replies, “I need to tell you something, but you won’t believe me”. On further inquiry she says, “He does things that make me uncomfortable” and points to her husband. When you ask what sort of things she says, “He grabs me, pushes me, and tugs me and he hurts me”. Her husband looks at you terrified and says, “I love my wife. It is sometimes difficult for me to manage transferring her between the wheelchair and the car or the bed, but I would never do anything to hurt her!”

Case 5 You are the attending covering the inpatient dermatological consult service at a teaching hospital for an 89-year-old woman in the medical intensive care unit. She lived independently until 4  weeks ago, when her daughter found her on the floor. A subdural hematoma was evacuated, and she was started on anti-epileptic therapies. She is still requiring vasopressors for blood pressure support and is on hemodialysis. The nurses noted a new eruption with blisters on her trunk. The patient is full code and her son and daughter report that she would “want everything done.” The consult resident questions whether this case represents futile medical care given her poor overall medical prognosis.

19 Care of Older Adults: Autonomy, Capacity and Duty to Protect

Case Analyses

Case 1

Case 2

This unaccompanied patient is potentially unable to make this medical decision. As discussed in the introduction, nursing home residents are often, but not uniformly, decisionally incapacitated. The discussion with this patient should start with information sharing, but it is important to assess his ability to understand and reflect on that information. If he understands the need for a biopsy and consents, the ethical dimensions of the case may not be apparent to the dermatologist. However, the dermatologist may recognize an “ethical dilemma” if the patient refuses the biopsy. The dermatologist now has a strong opinion on what is in the patient’s best interest and therefore questions whether the patient is using reason to arrive at his decision. The patient may or may not be using reasoning in his decision making. The dermatologist needs to explore the reasons the patient is refusing the biopsy. The dermatologist may only need to correct misunderstandings, e.g. that cancers are always painful. Alternately, the patient may reveal a concomitant medical condition that might reasonably influence the decision making. Exploring a patient’s reasoning may uncover fears that can be addressed, for example, fears of infection. Depression or loss of a spouse may influence older adults’ desires for nonintervention. The dermatologist cannot solve these problems but may be able to reassure the patient that consenting to biopsy is not consent to treatment. The decision to pursue aggressive treatment or not can be made at a later point. The dermatologist may advocate for the patient to have a trusted individual with him at the future visits and to complete a living will or POA. Alternatively, if the dermatologist assesses the patient as lacking decisional capacity, an alternate decision-maker should be found. This patient may be able to name the person he would want to make the decision. Although family members are most commonly named as decisionmakers, friends, religious officials, and neighbors may also serve as surrogate decisionmakers [13]. If the patient cannot name someone to make decisions for him, the dermatologist should reach out to the nursing home and the patient’s PCP for guidance. Within the confines of a busy clinic, this may require rescheduling the patient for an appointment in the near future. It may be tempting to do a low-risk, necessary procedure on this patient. State laws differ on the definition of a life-saving emergency; however, this procedure is unlikely to meet any such standard. Respecting this patient’s autonomy, even when it seems clear what is in his best interest, requires finding the best decision-maker for him.

In contrast to case 1, the older adult in this case has interested and involved loved ones, but they are in disagreement about her treatment. First and foremost, the dermatologist’s focus should remain on the patient and her decision making. The daughters are offering reasoning for the decisions they would prefer that she would make. The patient herself has concerns about the effects of the proposed treatments. There may be several reasonable options for this patient. A scenario such as this may benefit from the use of a patient decisional aid, even a simple one such as illustrated in . Fig. 2.1. The patient and her daughter are using reasoning based in each of the circles. Printing or drawing out the diagram and labeling each participant’s concerns within the diagram can help bring clarity. The patient is working out of the benefits and harms circle. She has intimate experience with the procedure and will at least participate in managing the surgical wounds. The first daughter is working out of the values and preferences circle. This daughter describes existential pain and suffering related to grief. The second daughter is working in the risk of death circle. Although the dermatologist may doubt the likelihood of metastatic disease from her current lesions, many patients and family have fears of cancer that need to be validated while correcting their misconceptions of this particular case. For example, the patient’s husband may have died of head and neck squamous cell carcinoma. Asking the patients to differentiate this particular squamous cell carcinoma from others is far above their expected level of medical knowledge. Dermatologists, who deal with non-life threatening cancers frequently, should remember that patients’ perceptions of cancer can be quite different. In using the decisional tool, the dermatologist has an opportunity to engage in shared decision making with this patient and her family. Labeling the patient’s concerns about the harms of the potential procedures helps the patient as though her concerns have been heard. Addressing the two daughters not as antagonists about what should be done may refocus their attention away from any latent family dynamics that may be affecting their stances and towards shared concern for the wellbeing of their mother. It may seem that using a decisional tool would take more time; however, time is saved in clarifying everyone’s views and concerns. The dermatologist also has an opportunity to directly address concerns without dominating the discussion. A negotiated agreement might be reached that treats those lesions most likely to later cause significant problems with a treatment modality that has  

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the fewest harms. The daughters can be affirmed for their love of their mother without the mother or the dermatologist siding with one or the other. It is easy for conversations among passionate individuals to turn into long reiterations of the same views. Decisional tools can help respect their views and move the conversation forward to reaching a consensus approach.

Case 3 Fragile older patients present a unique set of challenges, particularly in outpatient clinics. Although this patient had multiple serious diagnoses before she developed drug-induced pemphigus, she was relatively stable and had not been hospitalized in several years before her diagnosis of pemphigus. Her pemphigus was initially treated as a minor skin problem. However, her condition has changed significantly in the last few weeks. Although her Alzheimer’s disease is life-limiting, she is immediately at risk from complications of her pemphigus. Dehydration is already a significant risk both to nursing home residents and Alzheimer’s patients. Dehydration contributes to increased risk of delirium and urosepsis. In this patient, the risk of dehydration due to food and drink avoidance may be her most pressing concern. Particularly in frail older patients with multiple comorbidities, dermatologists should take a holistic view of the patient’s condition and the risks and benefits of treatment. The challenges in this patient include that the risks of the disease and the risks of treatment are both significant. Frequently, treating older patients “slow and low” is a preferable approach to medication. However, initial high doses of prednisone may be preferable for this patient for both control of pemphigus and palliation of her pain and dysphagia. In discussing her care, the patient should be significantly engaged to the degree she is able concerning the severity of her symptoms, particularly pain with eating and drinking. Even if she is not able to make a decision for herself, her voice matters in the decisions that are made for her. How she experiences her disease may affect whether a robust palliative approach is ethically preferable to a strategy to minimize the risk of the treatment. Additionally, the effect of prednisone on her diabetes is unpredictable, and a careful discussion should ensue with her primary care provider any anticipated issues in managing her diabetes if she is started on high-dose prednisone. The medical decision making around this case for the daughter are a little less clear than with traditional surgical interventions. It is not easy to simply use a substituted-decision making model. Whether the patient wants “everything to be done”

or “to be made as comfortable as possible” is not a clear choice. “Doing everything” may be using the same stronger medicines as “making her as comfortable as possible.” A modified best-interest standard may make more sense in this case. It is in this patient’s best interest to be relieved of her suffering and to be closely monitored for high-risk side effects. However, it is also in the patient’s best interest to remain in her familiar surroundings and maintain her fragile if stable general condition. The advantages of providing increased care for her must be weighed against the risks of worsening her mental health by taking her out of her familiar environment. Balancing these two needs will require cooperation among the dermatologist, the daughter, and the nursing facility. The conversation with the daughter should build on shared goals. The dermatologist should be clear about the gravity of the patient’s situation, even though she may look stable. If the patient is aware enough to be distressed about the discussion without benefiting from it, it may be preferable to have the conversation with the daughter separately. It is inappropriate to withhold medical information from a patient, but it may be permissible to have a separate discussion with the daughter. The daughter should consider what is possible for her mother at the nursing home; it may or may not be possible to provide intravenous fluids in her current setting. The dermatologist and daughter should plan together for the complications that might arise and how to manage them. The dermatologist should write a thorough note for the nursing home concerning her disease, the treatments, additional monitoring and precautions, and the goals of care that have been agreed upon. Good communication between the dermatologist, daughter and nursing home will be essential to manage this patient in a way that relieves her suffering and protects her from avoidable harm. Her disease or the medications to treat it may hasten her death; attention to medical ethics reassures all who participate in her care that they have relieved her suffering as best they can.

Case 4 Those working with children in any capacity are well aware of their status as a mandatory reporter of neglect and abuse they observe or are aware of. However, elder abuse receives significantly less attention in medical ethics literature. However, older adults are often more isolated than children, whose interactions with the school system help identify abuse or neglect. Physicians may play a particularly important role in identifying and reporting elder abuse.

21 Care of Older Adults: Autonomy, Capacity and Duty to Protect

Elder abuse is relatively common, with highquality epidemiologic surveys reporting rates of 7–9% [17]. These results are likely underreported as persons with dementia are less likely to participate in surveys and more likely to experience abuse. The five major types of elder abuse are physical abuse, psychological/verbal abuse, sexual abuse, financial exploitation, and neglect. Older women are more likely to be abused, and the abuser is most likely to be a spouse or adult child. Lower socioeconomic status and higher numbers of household members are associated with increased risk of financial or physical abuse. Isolation and a lack of social support also contribute to abuse [17]. The dermatologist in this case has a duty to address the concerns this patient has brought up. All states have mandatory reporting of elder care laws. Physicians are included in all of these statutes either directly by title or indirectly by function. The laws allow the reporter to assess the credibility of the accusation. However, the dermatologist should not see herself as taking on the role of an investigator. However, unless there is some clear reason to doubt the patient’s credibility, she should proceed as though it is a credible report. Although there can be physical signs of both abuse and neglect, these signs may be temporary. The dermatologist in her examination may note any bruises, particularly in unusual locations. However, a skin examination alone will not prove or disprove physical abuse or neglect. The dermatologist may wish to proceed through their office visit before returning to the issue. After the visit has concluded, but before the patients have left, the dermatologist should directly address the concern and what steps she plans to take next. The wife should be interviewed privately concerning her safety at home. In this interview, the dermatologist may also use capacity assessments to make sure the wife appreciates her situation and is using reason in her decision making. If she does not feel safe at home, she may suggest a friend or family member that could pick her up from the office. If she desires to go home, the dermatologist should not assume that she is denying the abuse occurred. The dermatologist should inform the wife that she plans to report the incident. The dermatologist can also discuss the situation with the husband. It is reasonable to inform him that as a physician she is a state-­mandated reporter. If the husband becomes angry or the dermatologist feels threatened, she should have a low threshold for alerting security officers or the police. The dermatologist should report the incident, including any after effects, to the appropriate authority. The ethical dangers in elder abuse are either taking on too little responsibility or too much. A dermatologist who is busy may look for reasons to not consider the wife’s report credible. Alternately, a

dermatologist may try to prove or disprove the concern clinically. Neither of those are ethically appropriate. The dermatologist should simply do her ethical (and legal) duty as a reporter of a credible incident. 55 Elder abuse may be under appreciated and underreported. 55 The five major types of elder abuse are physical abuse, psychological/verbal abuse, sexual abuse, financial exploitation, and neglect. 55 Healthcare providers, including dermatologists, are important first-line professionals in identifying elder abuse. 55 Dermatologists should have a low threshold for reporting suspected elder abuse

Case 5 Although medical futility is not specific to the care of older adults, concerns for medical futility do frequently arise in their care. Medical ethicists debate the scope of the term “medically futile” [17, 18]. Most narrowly defined, medical futility describes treatments that will not achieve their intended purpose. When patients receive cardiopulmonary resuscitation, there is a point at which another round will not be effective. Similarly, when a patient is receiving all available vasopressors and their blood pressure is decreasing, even starting resuscitation may be futile. Physicians are not required to provide futile care; however, there is little legal guidance concerning determinations of futility. Some physicians would like to expand the concept of futility to include treatments that have a low but not zero chance of success. Although there are some evidence-based studies on survivability in ICU settings, frequently, appeals to futility are based in a clinician’s opinion of a particular case rather than well-researched prospects of survivability [17. 18]. More often than true futility, the questions physicians are asking concern justice, particularly distributive justice. Distributive justice is the recognition that medical resources are limited, and some patients may be more likely to benefit from them than others. It may be ethically supportable to use those resources in ways that limit resources used when the chance of meaningful recovery is low. Significant ethical difficulties arise in ensuring that bedside allocations are not influenced by societal biases, including racism, ageism, sexism, and biases against socioeconomically disadvantaged persons. Unlike futility, where the price and amount of resources required are irrelevant to the decision, distributive justice assesses both the expense of the resources and the likelihood of meaningful recovery. Over time, determinations of the cost and ben-

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efits may change. Whereas once left ventricular assist-devices (LVADs) were used only for candidates for heart transplant, now some non-transplant candidates receive LVADs. Some patients with more extensive cardiac failure may be given a trial of extracorporeal membrane oxygenation (ECMO) but have that treatment discontinued after a fixed period of time if they do not show improvement in cardiac function or receive a heart transplant. ECMO is scarcer and requires significantly more resources. As both LVAD and ECMO patients would die without the treatment, an assessment of the relative costs in time and personnel changes the distributive justice calculation.

55 Futility occurs when a treatment will not achieve an intended goal. Futile medical care is never ethically required of physicians. 55 Distributive justice describes the reality that medical care is expensive and resource heavy. Patients who are most likely to benefit meaningfully from the treatments may be preferentially given access to scarce resources. In the case, the age of the patient and multiorgan failure suggest that she has a low chance of successful discharge from the hospital and an even lower

Conclusion Caring for older adults is a privilege. Their experiences and wisdom can lead to delightful doctor-­patient relationships. However, they can also present challenges, particularly as they lose their cherished autonomy and may be frustrated by their physical limitations. Dermatologists who care for older adults have a responsibility to help their patients maintain as much autonomy as they can. Dermatologists must also recognize when a patient’s capacity is not sufficient for the decision they are being asked to make. When a patient needs supported decision making or is incapacitated, a dermatologist may need to use additional skills to facilitate a successful supported or surrogate decision. Patient decision aids may be helpful to everyone involved in the patient’s care. Dermatologists must be vigilant on behalf of an older patient’s right to be

chance of returning to her previously independent state. The ICU team may be having extensive discussions of goals of care with this family. However, even given concerns about her global condition, the decision to provide care for her dermatological conditions should be driven by her best interests and the risks and benefits of treatment firstly and distributive justice secondarily, if required. If on examination a dermatomal erythematous patch with grouped vesicles is discovered, appropriate early intervention for herpes zoster with antiviral medication will decrease morbidity, including pain now or in the future, and risk of secondary infections in open skin. The risks of the treatment are low, and the benefits are significant even if she has a shortened life expectancy. Alternately, if instead of this easily treated disease, large dusky patches with early blistering prompt a diagnosis of likely Stevens-­ Johnsons Syndrome, a discussion with the ICU team and the family should focus on both her comfort and the low likelihood of her survival. Resource intensive interventions, such as transfer to a burn unit if the hospital does not have one, may be ethically inappropriate based in distributive justice. The patient has an ethical right to be cared for in a way that relieves her suffering and soothes her dying but not to receive all hypothetically advantageous treatments.

safe at home. Elder abuse can present in many forms including neglect, emotional and physical abuse. Dermatologists must properly report any concern they or their patient expresses for safety at home. Futility and questions of distributive justice often arise in caring for morbidly ill older adults. Dermatologists should identify concrete ethical principles guiding their decisions in providing therapeutic interventions or withholding expensive or inappropriate care. The age of the patient is not in itself reason to withhold care, but age and infirmity may influence the likelihood of a successful outcome, which may factor into appropriate distributive justice-based decisions. Like all medical treatments, dermatologists help older adults and their family consider what is best for the particular patient with attention to the competing need for medical care to be distributed justly to all.

23 Care of Older Adults: Autonomy, Capacity and Duty to Protect

References 1. Sessums LL, Zembrzuska H, Jackson JL. Does this patient have medical decision-making capacity? JAMA. 2011;306:420–7. 2. Appelbaum PS, Grisso T. The MacArthur treatment competence study: I. Mental illness and competence to consent to treatment. Law Hum Behav. 1995;19(2):105–26. 3. Appelbaum PS, Grisso T. Assessing patients’ capacities to consent to treatment. N Engl J Med. 1988;319:748. 4. Dardas AZ, Stockburger C, Boone S, An T, Calfee RP. Preferences for shared decision making in older adult patients with orthopedic hand conditions. J Hand Surg Am. 2016;41:978–87. 5. Chi WC, Wolff J, Greer R, Dy S.  Multimorbidity and decision-making preferences among older adults. Ann Fam Med. 2017;15:545–51. 6. Moise N, Ye S, Alcantara C, Davidson KW, Kronish I. Depressive symptoms and decision-making preferences in patients with comorbid illnesses. J Phychosom Res. 2017;92:63–6. 7. Bynum JP, Barre L, Reed C, Passow H.  Participation of very old adults in health care decisions. Med Decis Mak. 2014;32:216–30. 8. McLellan C, O’Neil AI, Cameron M, Reed A, Henderin C, Dellavalle RP, et  al. Facilitating informed treatment decisions in acne: a pilot study of a patient decision aid. J Cutan Med Surg. 2019;23:117–8. 9. O’Neil AI, McLellan C, Cameron M, Reed A, Henderin C, Dellavalle RP, et al. Putting the patient in patient-­ centered care: pilot testing an updated

patient decision aid for plaque psoriasis. J Cutan Med Surg. 2019;23:119–20. 10. Linos E, Berger T, Chren MM.  Point: Care of potential low-risk basal cell carcinomas (BCCs) at the end of life. J Am Acad Dermatol. 2015;73:158– 61. 11. Tan J, Linos E, Sendelweck MA, van Zuuren EJ, Ersser S, Dellavalle RP, et al. Shared decision making and patient decision aids in dermatology. Br J Dermatol. 2016;175:1045–8. 12. DeMartino E, Dudzinski DM, Doyle CK, Sperry BP, Gregory SE, Siegler M, et al. Who decides when a patient can’t? Statutes on alternate decision makers. N Engl J Med. 2017;376:1478–82. 13. Shalowitz DI, Garrett-Mayer E, Wendler D.  The accuracy of surrogate decision makers: a systematic review. Arch Intern Med. 2006;166:493–7. 14. Azoulay E, Pochard F, Kentish-Barnes N, Chevret S, Aboab J, Adrie C, et al. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med. 2005;171:987– 94. 15. Ubel PA, Angott AM, Zikmund-Fisher BJ.  Physicians recommend different treatments for patients than they would choose for themselves. Arch Intern Med. 2011;171:630–4. 16. Sulmasy DP, Hughes MT, Thompson RE, Astrow AB, Terry PB, Kub J, et al. How would terminally ill patients have others make decisions for them in the event of decisional incapacity? A longitudinal study. J Am Geriatr Soc. 2007;55:1981–8. 17. Lachs MS, Pillemer KA.  Elder abuse. N Engl J Med. 2015;373:1947–56. 18. Helft PR, Siegler M, Lantos J. The rise and fall of futility movement. N Engl J Med. 2000;343:293–6.

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Genetic Medicine Arrives in the Outpatient Clinic: Ethical Concerns for Dermatologists Anne L. Housholder

Contents

Discussion – 26 Conclusion – 37 References – 37

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_3

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Learning Objectives

DNA predicts our future. Although this belief does not adequately account for variable penetration and the role of lifestyle modification, it has created greater societal discussion about the proper uses of genetic testing and modification. Fears about the possibility of misuses of genetic data prompted the Genetic Information Nondiscrimination Act of 2008 [3]. This statute prohibits health insurance companies and employers from using either genetic information or family histories to make decisions about hiring, firing, or discriminating against individuals and employees. Societal awareness and Discussion discussion of the risks of genetic information misuse led to a fortuitous situation where legal In the six decades since Watson, Crick, governance occurred proactively. Franklin and Wilkins first described the strucUnfortunately, there has been no such simiture of DNA, every field of medicine has larly proactive approach when it comes to conimagined the diagnostic and therapeutic pos- sumer-based genetic testing. Pharmaceutical sibilities of quick and inexpensive access to a and biotechnology companies effectively underpatient’s genetic information. A major step in write the costs of consumer-based genetic testsuch a direction arrived when the Human ing services by paying for the use of these data Genome Project completed the DNA sequence bases in product development. Medical and of the entire euchromatic human genome in legal ethicists are concerned about the adequacy 2003 [1]. The project cost 3 billion US dollars of informed consent in what amounts to bioand required 13 years and 20 universities and medical research [4]. There are also significant research centers around the world. Since then, concerns that law enforcement will increasingly the sequencing speed has decreased to weeks use large genetic databases to identify suspects. and the cost to less than a thousand dollars. Although private companies generally state President Obama inaugurated the Precision they will divulge genetic information only in Medicine Initiative in 2016 in order “to under- response to a subpoena, law enforcement can stand how a person’s genetics, environment, narrow suspect lists using open source genetic and lifestyle can help determine the best databases to find familial associations. The pubapproach to prevent or treat disease” [2]. One lic’s approval of such uses, such as in the of its main components would create a genetic “Golden State Killer” arrest, may wane if they and health database for one million volunteers. encroach beyond serious felonies [5]. Another This initiative, the All of Us Research Program, fraught application is requiring genetic paterbegan recruiting volunteers in 2018. In addi- nity testing before a mother and child receive tion to the rapid increase in research and clini- social services like food stamps and subsidized cal medicine applications of accessible and housing. Genetic data are moving far outside affordable DNA sequencing, direct-­ to-­research labs and hospital walls into places consumer genetic testing offers ancestry, dis- where the safeguards built by clinical and ease carrier states and trait analysis for as little research ethics may not exist. as 50 dollars. The ethical concerns that arise Beyond the uses of genetic testing to idenfrom using this information appropriately are tify diseases or prove kinship, society is also no longer purely hypothetical, but a necessary keenly aware that genetic medicine could be part of the practice of clinical dermatology. used to introduce favorable genes and remove It is tempting to concentrate on the novel undesirable genes in a patient or zygote. ethical situations that access to genetic infor- Nowhere do the possibilities for previously mation could provide. Public discourse around unimaginable benefit or harm arise more powgenetic information often suggests that our erfully than in gene editing. Genetic modifica

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1. Understand the impacts on medicine and society caused by increased genetic testing for personal interest, research, and clinical medicine. 2. Differentiate the types of ethical reasoning that are useful for analyzing the impacts of increased clinical use of genetic information. 3. Identify ethical concerns that arise in the clinical application of genetic testing.

27 Genetic Medicine Arrives in the Outpatient Clinic: Ethical Concerns…

tion is practiced on crops to create drought, infestation and pesticide resistance [6]. Public concerns about genetically modified organisms (GMOs) resulted in a bill signed in 2016 requiring greater transparency in GMO and nonGMO foods [7]. From Aldous Huxley’s 1931 novel, Brave New World, to any number of science-fiction movies, the public’s imagination is regularly stoked by the possibility of dystopian futures due to the misuse of genetic editing on humans. Nevertheless, the underlying science of gene editing is moving forward rapidly. Effective gene editing requires that the edited genes be placed within the genetic code at an appropriate location and that the mechanism for the gene introduction be safe for the host organism. Initial attempts, including using various viral vectors, were too unreliable for clinical application in humans. CRISPR-Cas9 technology is a major step forward in precision and reliability for gene editing [8]. In 2012, researchers discovered that certain bacteria use CRISPR (Clustered Regularly Interspersed Short Palindromic Repeats) regions of DNA as an antiviral protection. Cas9 is an enzyme that cuts the DNA at a specific location, guided by RNA. Using this process, scientists can target DNA sequence to be inactivated or deleted. They can also add additional DNA templates alongside CRISPR/Cas9 to correct the undesirable gene or add novel genes to the organism. This process is used widely in laboratories to create specific animal models. In humans, translational research on non-germline human cells with CRISPR-Cas9 is an active area of research. The most promising current uses of these therapies are for inherited hemoglobinopathies (e.g. thalassemia) and immuno-oncology to create targeted immune cells from the patient’s own white blood cells. In the future, these therapies may significantly influence the treatments of cutaneous T-cell lymphoma and melanoma in addition to rarer cutaneous malignancies. The ethical considerations that inform the use of somatic cell gene manipulation are primarily those of traditional research ethics. The adequacy of informed consent to the ultimately unquantifiable risks that novel therapies might produce is particularly pertinent. Jesse Gelsinger’s death from a rudimentary gene

therapy technique for ornithine transcarbamylase deficiency affected the pace and scope of human gene therapy trials for a generation [9]. Despite the use of best practices in research ethics, gene editing may produce unexpected and unpredictable consequences. One 2016 therapeutic trial, using certain chimeric antigen receptor (CAR) T-cell drugs that engineer a patient’s T cells to attack their malignant B cells, was halted due to five deaths associated with cerebral edema [10]. Unfortunate and unexpected outcomes can occur in any therapeutic trial. Evaluations of adequate consent, favorable risk-benefit ratio, independent review and respect for persons apply no more or less to genetic modification than to other experimental designs. Research ethicists are highly specialized and well-­ positioned within research institutions and on Institutional Review Boards (IRBs) to handle the ethical concerns of therapeutic genetic trials on human somatic cells. CRISPR-Cas9 technology has evoked the greatest public concern when the question turns to germline manipulation. It is clearly technologically feasible to modify human gametes and zygotes. At the Second International Summit on Human Genome Editing in 2018, Chinese researcher He Jiankui reported that he had used CRISPR-Cas9 technology to modify the CCR5 gene in two embryos, which were successfully implanted and produced twin girls [11]. Within the scientific community, some question the truth of this claim in the absence of independent verifications of the gene editing. Nevertheless, his work heightened the question of how long scientists will refrain from creating gene-edited human embryos and children. >>Points of Emphasis 55 CRISPR-Cas9 technology is used to specifically modify the DNA of crops and research animals. 55 Clinical trials of CRISPR-Cas9 technology to modify human somatic cells to treat hematological disorders and cancers are underway. 55 Use of CRISPR-Cas9 technology to modify human germline DNA is an area of active international ethical concern.

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The question of whether scientists, and eventually reproductive endocrinologists, should engage in heritable genetic modification has been met with strong but not complete resistance by large national and international scientific committees. The International Society for Stem Cell Research (ISSCR) has called for a moratorium on nuclear genome editing of human germ cells [12]. Its concerns include the risk of unintended genome damage being passed down to future generations. In the United States, the National Academies of Sciences, Engineering and Medicine (NASEM) reviewed genomic engineering technologies in 2017 [13]. They concluded that heritable gene editing should be currently impermissible, but they believed it might be permissible for medical indications in the future. Both the ISSCR and NASEM have expressed concerns about the risk of enhancement therapies. Because pre-­conception carrier identification and pre-­ implantation genetic testing are becoming routinely available for at-risk parents, the need for nuclear genome editing of germ cells may be quite limited for traditional genetic diseases. CRISPR-Cas9 or similar technology would be preferable to selectively introduce genetic material not present in either parent. This possibility for enhancement therapy provokes many concerns among ethicists. Ethical concerns about human enhancement therapies long predate the ability to engage in germline modification. The history of the eugenics movement, from its widest acceptance in the 1920–50s to the last known forced sterilization in North Carolina in 1973 [14], influences any discussion of what is genetically preferable among humans. The ethical concerns of human enhancement require a wider ethical view than the typical perspective of clinical ethics. Traditional clinical medical ethics frequently considers what is ethically preferable in a particular situation or among particular patients, surrogate decision-­ makers, and the medical team. Evaluated purely through a narrow ethical lens, human enhancement through genetic manipulation might easily be justified for individuals. Many parents will go to extraordinary lengths to

help their child be brighter or more athletic than their peers, so if they could achieve such goals genetically, why shouldn’t they? This limited view, however, does not address all of the true stakeholders, including the future generations and those unable to access such technology. The ethical concerns then fall not to “How will this desirable gene help this individual?” but rather “What is best for all of humanity if genetic manipulation were used in this way?” The choices made in permitting or restricting germline editing by our current generation will permanently affect future generations. If germline editing might be permissible for medical diseases but not for enhancement, the first requirement would be to differentiate disease from enhancement. Dermatologic conditions such as acne are classic examples of where the line between disease and enhancement might not be brightly drawn. The ubiquity of acne as a fact of teenage life might suggest that acne is something of a rite of passage, and never having acne might be a desirable enhancement. The severity of acne conglobata or SAPHO syndrome and the prospect of lifelong severe acne scarring might easily sway one towards allowing treatment. Intent might also be relevant. Altering the MCR-1 gene to avoid a family history of aggressive and early melanoma might be acceptable but doing so to facilitate a parental preference for a child who tans easily might not. It is possible that the concept of what constitutes a disease might expand over time, slowly narrowing what is considered normal and healthy as more undesirable traits are edited out of the gene pool. Because genetic variation is desirable within a species, an overly expansive definition of disease could have deleterious effects on the human species. Several relatively common genetic diseases including cystic fibrosis, thalassemias, and sickle cell disease are thought to be potentially advantageous in the carrier state. It becomes imperative to consider the wider effect that genetic manipulation of individuals might have on our shared human genome.

29 Genetic Medicine Arrives in the Outpatient Clinic: Ethical Concerns…

An ethical lens well suited to consider the wider impact of germline enhancement modification is public health ethics, which often relies on a consequentialist moral framework. Public health ethics focuses on the wellbeing of a population or community and is often distinctly future minded [15]. It necessarily requires collective action to achieve its desired outcomes. Thus, it is much more closely tied to public policy than to individual health decisions. Because of the risks of paternalism in making public policy, consensus-building is a primary tool to develop policies that are widely acceptable. . Table 3.1 describes several of the key concepts that guide public health ethicists. Particularly important in public health ethics is the harm principle: “it is justified to restrict the liberty of person A in order to prevent A from causing harm to person B” [15]. Closely related to this are concerns for distributive justice. Policies addressing distributive justice will be widely beneficial without being particularly detrimental to any group.  

..      Table 3.1  Key concepts in public health ethics as they relate to research, policies and interventions Utility

Maximizing balance of benefits of over harms

Reciprocity

Research participants who take on risk for should also be included among the beneficiaries of that research

Trust

Relationships between researchers and subjects, policy makers and the public, must be built on mutual trust

Equity

Decreasing disparities in health and wellbeing between subpopulations

Mutuality

Relationships are interdependent and should be built on shared values and goals

Universality

Goods and benefits should be distributed to all similarly affected persons

Distributive justice

Benefits and burdens should not disproportionately affect subpopulations, particularly historically marginalized populations

Public health ethics perspectives are helpful in considering the influence of genetic enhancement on the well-being of both current and future populations. Genetic enhancement could affect prejudice, stigma, and social and economic disparities. Realistic assessments of how genetic enhancement would proceed make it likely that those most able to access enhancement therapies will be the wealthiest among us. This type of enhancement modification would have serious public health ethical concerns. Much of the genetic information used by researchers was obtained from patients. These patients likely considered their contribution to science to be furthering the goals of treating patients like themselves. Public health concepts of trust and reciprocity may be sacrificed if scientists turn from curing diseases to helping parents who would have healthy children instead have more genetically desirable children. Preferentially allowing access to wealthy individuals works against public health goals of equity, universality, and distributive justice. Widening the gap between the haves and the have-nots to include favorable germline mutations, particularly in enhancement therapies, has little ethical grounds when viewed from a lens of public health ethics. All physicians, including dermatologists, may have a role in promoting the right use of genetic research and interventions in ways that benefit humans justly and equitably. Genetic medicine is always a forward-­ looking enterprise. The knowledge gained has posed even more questions. As researchers peered at the patterns of the nucleotide codes, they realized there were also epigenetic codes, which seem to control the preferential activation or silencing of genes within specialized cells. It is likely that many new discoveries will continue to change our understanding of genetics even while the fruits of this research are rapidly entering clinical medicine. In the cases below, the scenarios are based in real world practice. The ethical challenges they present may have been unimaginable 20 years ago. However, attention to perceiving ethical impacts and using traditional ethical approaches can help dermatologists navigate these new frontiers.

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Case Scenarios and Discussions

Case 1

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A healthy 32-year-old woman presents to your clinic for a total body skin examination. She reports that her 27-year-old sister also had a melanoma excised last year. The patient had previously received an annual total-body skin examination due to greater than 50 nevi and multiple clinically atypical nevi in childhood but has not had a skin examination in 7 years and used tanning beds in her 20s. On physical examination, an irregularly shaped brown macule is present on her posterior thigh. After excisional biopsy, the diagnosis of stage Ia melanoma (0.6  mm Breslow thickness) is established. During her follow-up appointment, where you review the findings and recommend re-excision with 1  cm margins, she asks whether genetic testing of the lesion was performed. She reports her sister’s melanoma was found to be “high risk” after genetic testing, and she would like the same testing. In case 1, the fundamental ethical dilemma is one quite familiar to dermatologists: what to do with potentially inappropriate requests for services? Although effective therapies for later stage melanomas have improved dramatically, the diagnosis of melanoma, even melanoma in situ, is a significant event for patients. Melanoma patients expressed higher levels of “feeling depressed” than did non-melanoma skin cancer patients [16]. In head and neck melanoma, young female patients had worse quality of life outcomes after excision [17]. In addition, fear of disease progression affects cancer patients. Despite 10-year survivals greater than 95%, early stage melanoma patients also experience fear of progression [18]. After the diagnosis of melanoma, patients are routinely admonished to engage in significant sun-protective behaviors. Melanoma patients report significant fears around their diagnosis and require emotional support during this time [19]. It is thus not surprising that a young woman might hope that predictive genetic testing on her sample would provide her with either reassurance or a rationale for increased vigilance about her disease.

The role of predictive genetics testing in melanoma is controversial. In the AAD working group’s 2019 Guidelines for the Care and Management of Primary Cutaneous Melanoma, “routine molecular testing, including GEP [Gene Expression Profiling], for prognostication is discouraged until better use criteria are defined” [20]. They suggest that GEP testing can be used for differentiating benign nevi, including Spitz nevus, from cutaneous melanoma. For GEP to be recommended for prognostication, it would not simply need to effectively discriminate between high-risk and low-risk cases, but also independently to have evidence in support of changed management based on its results. Using GEP to “upstage” a patient is not without potential harms. Sentinel lymph node biopsy (SLNB) has prognostic significance but also a 2% risk of lymphedema in the effected limb and is currently not recommended for melanoma in situ or T1a (>Points of Emphasis 55 The introduction of routine genetic testing in clinical dermatology requires heightened ethical diligence. 55 Prognostic genetic testing should be undertaken only if solid data supports benefits that outweigh risks. 55 Dermatologists should help patients consider when and to whom they should reveal personal genetic information. 55 To ethically consent patients to genetic testing requires dermatologists to understand the risks and benefits, including the revelation of unwanted knowledge.

Conclusion As dermatologists learn to use genetic medicine to diagnose and treat patients, they will face ethical dilemmas related to the particularities of genetic information. Some of these dilemmas will be familiar while some will be novel. One aspect of practicing ethical medicine in the genomic age will be staying up to date in the rapidly evolving field. Clinicians must avoid use prognostic genetic testing when the research does not support its use; however, the research is constantly advancing. As diagnostic genetic testing becomes more routine, dermatologists must step up to the challenges of helping patients navigate its impact on their own lives and the lives of those around them. Finally, dermatologists must also bridge the gap between what research hopes to accomplish with massive genetic databases and a doctor’s primary duty to protect patients. To be a doctor is most fundamentally to be a teacher. Many of our patients have limited knowledge about genetics. To be good teachers, dermatologists must continue to be excellent learners themselves in this rapidly changing field. To be wise doctors, dermatologists engage in continued ethical reflections on what is right and best to do with this powerful but always incomplete genetic knowledge.

References 1.

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The Human Genome Project [internet]. Bethesda: National Institutes of Health, c2019. Available from: https://www.­genome.­gov/human-genome-­ project. Accessed 1 Dec 2019. What is the precision medicine initiative? [internet]. Bethesda: National Institutes of Health, c2015–2019. Available from: https://ghr.­nlm.­nih.­ gov/primer/precisionmedicine/initiative. Accessed 1 Dec 2019. Genetic Discrimination. Bethesda: National Institutes of Health, c2015–2019 [cited 2019 Dec 1]. Available from: https://www.­genome.­gov/ a b o u t -­g e n o m i c s / p o l i c y - i s s u e s / G e n e t i c Discrimination Accessed 1 Dec 2019. Koch VG.  PGTandMe: social networking-based genetic testing and the evolving research model. Health Matrix Clevel. 2012;22:33–74. Kolata G, Murphy H.  The golden state killer is tracked through a thicket of DNA, and experts shudder. The New York Times [newspaper on the Internet], 2018 April 27: A:1. Available from: https://wwwnytimescom/2018/04/27/health/dna-­ privacy-­g olden-state-killer-genealogyhtml. Accessed 1 Jan 2020. Phillips T.  Genetically modified organisms (GMOs): transgenic crops and recombinant DNA technology. Nature Education 2008;1:213. Available at https://www.­nature.­com/scitable/topicpage/genetically-modified-organisms-gmostransgenic-crops-and-732/. Accessed 1 Jan 2020. Brody JE. The Debate Persists Over GMO foods. The New York Times [newspaper on the Internet], 2018 April 24: D:4. Available from: https://www. nytimes.­com/2018/04/23/well/eat/are-gmo-foods-­ safe.­html. What are genome editing and CRISPR-CAS9? [Internet]. Bethesda: National Institutes of Health, c.2017–2019 Available from: https://ghr.­ nlm.­nih.­gov/primer/genomicresearch/genomeediting. Accessed 1 Dec 2019. Rinde M. The Death of Jesse Gelsinger, 20 years later. Science History Insitute [Internet]: 2019 June 4. Available from: https://wwwsciencehistoryorg/distillations/the-death-of-jesse-gelsinger-­2 0years-later. Accessed 1 Dec 2019. Dengler R.  Cancer therapy company tries to explain deaths in recent trial. American Association for the Advancement of Science [Internet]. 2017 Nov 16. Available from https:// w w w s c i e n c e m ag o rg / n ew s / 2 0 1 7 / 1 1 / c a n c e r-­ immunotherapy-­c ompany-tries-explain-deathsrecent-trial. Accessed 1 Dec 2019. Cyranoski D. CRISPR-baby scientist fails to satisfy critics. Nature News [Internet]. 2018 Nov 28.

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Available from: https://wwwnaturecom/articles/ d41586-018-07573-w. Accessed 1 Dec 2019. 12. International Society for Stem Cell Research. News Articles [Internet]. 2015 Mar 15. Available from: https://wwwisscrorg/professional-resources/ news-publicationsss/isscr-news-articles/article-­ listing/2015/03/19/statement-on-human-germlinegenome-­modification. Accessed 1 Dec 2019. 13. The National Academies of Sciences, Engineering and Medicine. Human Genome Editing Initiative [Internet]. Available from: https:// nationalacademies.­o rg/gene-editing/consensusstudy/index.­htm. Accessed 1 Dec 2019. 14. Rose J.  A brutal Chapter in North Carolina’s Eugenics Past. National Public Radio [Internet]. Available from: https://www.­npr.­ org/2011/12/28/144375339/a-brutal-chapter-innorth-­carolinas-eugenics-past. Accessed 1 Dec 2019. 15. Dawson A, editor. Public health ethics: key concepts and issues in policy and practice. Cambridge: Cambridge University Press; 2011. 16. Sampogna F.  Comparison of quality of life between melanoma and non-melanoma skin cancer patients. Eur J Dermatol. 2019;9:185–91. 17. Mori S. Association of quality of life with surgical excision of early-stage melanoma of the head and neck. JAMA Dermatol. 2019;155:85–9. 18. Wagner T. Fear of cancer progression of patients with Stage IA malignant melanoma. Eur J Cancer Care (Engl). 2018;27:e12901. 19. Bth-Hextall F, Nalubega S.  Evans C The needs and experiences of patients with skin cancer: a qualitative systematic review with metasynthesis. Br J Dermatol. 2017;177:666–87. 20. Swetter SM, Tsao H, Bichakjan CK, Curiel-­ Lewandrowski C, Elder DE, Gershenwald JE, et  al. Guidelines of care for the management of primary cutaneous melanoma. J Am Acad Dermatol. 2019;80:208–50. 21. Mirsky RS. Management decisions made by physician assistants and nurse practitioners in cutaneous malignant melanoma patients: impact of a 31-gene expression profile test. J Drugs Dermatol. 2018;17:1220–3. 22. Svoboda RM, Glazer AM, Farberg AS, Rigel DS.  Factors affecting dermatologists' use of a 31-gene expression profiling test as an adjunct for predicting metastatic risk in cutaneous melanoma. J Drugs Dermatol. 2018;17:544–7. 23. Farberg AS, Glazer AM, White R, Rigel DS. Impact of a 31-gene expression profiling test for cutaneous melanoma on dermatologists' clinical management decisions. J Drugs Dermatol. 2017;16:428–31.

24. Finlay E, Stopfer JE, Burlingame E, Evans KG, Nathanson KL, Weber BL, et  al. Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genet Test. 2008;12:81–91. 25. Dean M, Rauscher EA.  Men’s and women’s approaches to disclosure about BRCA-related cancer risks and family planning decision-making. Qual Health Res. 2018;28:2155–68. 26. Hoskins LM. Toward a new understanding of risk perception among young female BRCA1/2 “previvors”. Fam Syst Health. 2012;30:32–46. 27. AAP Committee on Bioethics. Ethical and policy issues in genetic testing and screening of children. Pediatrics. 2013;131:620–2. 28. Aspinwall LG, Taber JM, Kohlmann W, Leaf SL, Leachman SA. Unaffected family members report improvements in daily routine sun protection 2 years following melanoma genetic testing. Genet Med. 2014;16:846–53. 29. Lynch HT, Snyder CL, Lynch JF, Ghate S, Narod SA, Gong G.  Family information service participation increases the rates of mutation testing among members of families with BRCA1/2 mutations. Breast J. 2009;15(Suppl 1):s20–4. 30. An overview of consent to reproductive health services by young people. Guttmacher Institute [Internet]. As of 2019 Nov 1. Available at: https:// w w w.­g u t t m a c h e r.­o rg / s t at e - p o l i c y / ex p l o re / overview-­minors-consent-law. Accessed 1 Dec 2019. 31. End violence against women international [Internet]. Available at: https://www.­evawintl.­org/ PAG E I D 2 2 / B e s t - P ra c t i c e s / FAQ s / M e d i c a l -­ Mandated-­Reporting. Accessed 1 Dec 2019. 32. Fischer CB, Layman DM. Genomics, big data and broad consent: a new ethics frontier for prevention science. Prev Sci. 2018;19:871–9. 33. Fisher CB, Harrington EL.  Ethics in prevention science involving genetic testing. Prev Sci. 2013;14:310–8. 34. Malin B, Sweeney L. How (not) to protect genomic data privacy in a distributed network: using trail re-identification to evaluate and design anonymity protection systems. J Biomed Inform. 2004;37:179– 92. 35. Harmon A. Tribe wins fight to limit research of its DNA.  The New  York Times 2010 Apr 22: A:1. Available at https://wwwnytimescom/2010/04/22/ us/22dnahtml?searchResultPosition=1 Accessed 1 Jan 2020. 36. McQuillan GM, Porter KS, Agelli M, Kington R. Consent for genetic research in a general population: The NHANES experience. Genet Med. 2003;5:35–42.

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Who Decides? Consent, Assent and Confidentiality in Pediatric Dermatology Practice Julia A. Siegel and Lionel Bercovitch Contents Introduction – 40 S ome Basic Concepts and Terminology – 40 The Role of Parenting – 41 Adolescent Considerations – 42 When Agreement Cannot be Reached – 42

 onclusion – 47 C References – 47

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_4

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nnLearning Objectives

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1. Characterize the ethical challenges encountered in pediatric dermatology. 2. Balance the wishes of the child and parent or guardian with the medical judgment of the pediatric dermatologist in order to act in the child’s best interest. 3. Analyze the concepts of minor, emancipated minor, and best interests principle as they relate to surrogate decision making and informed permission in ­ ­pediatric dermatology. 4. Learn to weigh benefits and harms of various procedures in pediatric dermatology when deciding if or when they should be performed. 5. Identify cases in which parental decisions may conflict with the child’s best interests or the medical advice of the physician, and consider how to proceed.

Introduction  ome Basic Concepts S and Terminology The concept of a minor is based in common law and in most legal jurisdictions is applied to children who have not reached their eighteenth birthday or been designated as mature minors or emancipated minors. Minors are legally presumed to not have decision making capacity and require parental consent for most medical treatment and to participate as subjects in medical research. Mature minors are generally designated as such by a court and are deemed to have the cognitive maturity to make their own medical decisions, regardless of their living situations or degree of independence from their parents [1]. The status of emancipated minor has been conferred on adolescents who are pregnant, married, living financially and physically independently from their parents, are parents themselves, or are enlisted in the military [2]. Autonomy, one of the core principles of contemporary Western bioethics, is defined as the right of individuals possessing decision making capacity to make decisions regarding their medical care after being informed of

risks, benefits and alternatives of proposed interventions without coercion or manipulation (the core requirements of informed consent). Under common law, minors are presumed not to have autonomy because they are not considered to possess decision making capacity and are therefore not legally permitted to provide informed consent (unless declared mature minors or emancipated minors). Under federal and state laws, exceptions are made for certain situations, such as reproductive care, testing and treatment for sexually transmitted infections and HIV, and treatment of substance use disorders, but statutes differ among states and territories. Typically, the physician-patient relationship, fundamental to the practice of medicine, involves a third (and sometimes a fourth) party when the patient is a minor. This may be a parent or legally appointed guardian (for the sake of brevity, we will refer to either as “the parent”). The role of the parent will vary depending on the age and maturity of the child, the gravity of the medical condition, the risks of the proposed intervention, as well as legal, cultural and familial considerations. Minors are considered to be a vulnerable population and parents are therefore presumed to have both the moral and legal authority to act as surrogate decision-makers for their children. In 1995 and 2016, the American Academy of Pediatrics Committee on Bioethics described the concepts of “informed permission” and “assent of the patient” as they apply to informed consent in the pediatric population [3, 4]. Parents provide informed permission (subject to the same conditions as informed consent, as noted above) with the minor’s assent when appropriate. Unlike informed consent, however, the parent makes the decision for the child, which may conflict with what the child wants. Parents are uniquely qualified to act as decision makers for their minor children as they are in the best position to know what is best for the patient and the family unit. As surrogate decision makers, parents are expected to act in a manner that maximizes benefits and minimizes risks, first and foremost to the patient and secondarily, the family. Two models of parental decision making have been

41 Who Decides? Consent, Assent and Confidentiality in Pediatric…

described: the best-interests standard and the harm threshold [5]. According to the bestinterests standard, parents are expected to make decisions that maximize benefit and minimize harm to the patient [6]. Parents may balance the best interests of the child with the needs of the family as a whole, as long as the basic needs of the child are met. The harm threshold is a well-established standard widely used by governmental agencies and courts (as well as healthcare providers) and recognizes that parents may exercise their moral and legal rights to make medical (and other) decisions for their children except where the risk of harm to the child exceeds a certain acceptable threshold, above which parental wishes will not be tolerated [5, 7]. The state may exert its right to protect the child and override parental authority, and healthcare providers may challenge the parents’ decision and refuse to honor their wishes. In some cases, this may require a court order. 55 Minors are a vulnerable population and may not possess decision making capabilities or legal rights to make medical decisions. 55 Surrogate decision makers (in this case, parents or legal guardians) must act in the best interests of the minor and make decisions that maximize benefit and minimize harm to the child, while balancing the needs of the family unit.

Assent is a shared decision making process in which minor patients are presented with information at a pace and level they can comprehend, allowing them a developmentally appropriate degree of autonomy, even if lacking legal authority or mature decision making capacity. The degree to which a child understands his or her condition and the treatment options available, however, depends on a multitude of factors. These include the patient’s age, maturity, and cultural or religious beliefs. Additionally, the gravity of the situation at hand dictates how much input a child may have in his or her care, particularly if there is disagreement between a child’s wishes and what is considered to be medically necessary

[8]. It is also important to consider the forces that may influence a patient’s assent. Children are often swayed by parental opinion, anticipation of punishment or reward, and fear or anxiety. It is important to make the child feel part of the decision making process, both to allow the child to feel control over his or her own body as well as to engender trust in the clinician. The American Academy of Pediatrics recommends that the clinician assess the patient’s understanding of the clinical situation and whether there is parental or other external pressure to accept the proposed intervention, and then obtain the child’s assent to proceed. Depending on the nature of the intervention and gravity of the condition, children may be developmentally mature enough to participate in the assent process as early as 7 years of age. While assent is usually formally documented in writing in clinical research, the process in the clinical setting tends to be more informal. 55 Assent gives minors a degree of autonomy, allows them to be involved in medical decisions, and improves their trust in healthcare providers.

The Role of Parenting Under the guidance of these ethical principles, the triad of medical provider, parent, and child attempts to unite to care for the child. The ­best interests standard suggests that the parent or guardian should aim to maximize benefits and reduce harms to the patient, while considering the child’s interests as a whole [6, 9]. Good parenting is based on a careful balance between parental control and support of the child. The method in which a parent or guardian raises a child may have a significant effect on how decisions are made in the medical setting. Authoritarian parenting involves a low level of support for the patient and a high level of ­control by the parent. This method is parent-centered, and rules are placed that are non-­negotiable, restrictive, and punitive. Authoritative parenting,

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on the other hand, maintains a high level of parental control, but simultaneously supports the child. Children are encouraged to understand the situation at hand, take initiative, and negotiate. Permissive parenting is supportive of the child but has a low level of parental control. Children may have too much power in this setting and may lack boundaries. Finally, uninvolved parenting has both low levels of child support and parental control. In these households, children may feel neglect and lack of encouragement, and, as a result, may emotionally withdraw [10]. Understanding various parenting styles may help to identify challenges faced by the physician-parent-patient triad and inform solutions.

Adolescent Considerations Although many adolescents consider themselves to be cognitively able to make their own decisions, parents often still see them as children who need guidance. It is important to treat this population differently from younger children and focus on empowering them and respecting their autonomy, while also helping them to be informed and make rational choices. Because they have limited life experience, they often rely on parents or guardians to help them understand longterm consequences [8–10]. A provider’s relationship with an adolescent may help him or her determine the patient’s readiness to make informed decisions and how to incorporate their desires into treatment plans. The concepts of privacy and confidentiality are also particularly important in adolescent medicine. In this context, privacy is a patient’s right to restrict access to his or her own personal health information and confidentiality is a provider’s duty to prevent unwanted (or illegal) disclosure of such information [11]. Confidentiality is a key component of establishing trust between an adolescent patient and provider and helps adolescents feel more comfortable disclosing sensitive information to providers. However, there is a broad range

of adolescents’ decision making abilities. Confidentiality may be warranted for more mature individuals, but may not be appropriate for others. It is important to note that legally, the Health Information Portability and Accountability Act (HIPAA) states that parents or guardians should have access to the protected health information of nonemancipated minors except in specific circumstances including substance use, mental health, and reproductive health [12]. Because some commonly used medications in dermatology are teratogenic, discussions regarding pregnancy prevention are particularly relevant. Additionally, substance use can lead to certain dermatologic findings, such as levamisole-adulterated cocaine causing retiform purpura [11], and it is therefore important for adolescents to feel comfortable disclosing such exposures. In general, regardless of the law, most pediatric practitioners accord adolescents a significant degree of confidentiality, as well as private clinical encounters, in order to maintain a trusting and productive clinical relationship. Exceptions would be situations in which there is a risk of selfharm or serious health consequences to the adolescent. Adolescents should be accorded a greater degree of autonomy, privacy and confidentiality to engender trust, subject to limitations based on maturity of decision making, the gravity of the clinical situation and the law.

 hen Agreement Cannot W be Reached At times, the desires of parents or a child are not in agreement with the medical judgment of the provider. In these situations, the best interest of the child must be considered within the context of parental opinion and the child’s wishes, particularly when the child is more mature. If consensus cannot be reached and the parents are unwavering and are unwilling

43 Who Decides? Consent, Assent and Confidentiality in Pediatric…

to consider the provider’s medical judgment and experience in deciding what is best for the child, it is reasonable to suggest the patient and parent seek a second opinion, and in extreme cases, that the patient-parent-­provider relationship be terminated. If there is concern for abuse or medical neglect, the proper legal protective services should be contacted.

If an agreement cannot be reached, second opinions may be suggested, while in extreme cases the provider-parent-child relationship can be terminated. If the clinician suspects abuse or neglect, the appropriate child protective services can be notified.

Case Scenarios

Case 1 A 5-year-old boy presents with a 3-cm brown hypertrichotic plaque on his forearm that has been present since birth. He does not appear to be bothered by it but his mother is anxious about it becoming melanoma. She is also concerned it will affect him socially. She demands that it be removed. You explain that this is a medium-sized congenital melanocytic nevus which has a >Points of Emphasis 55 There is great variability in the quality and ethical practices of short-term medical service trips (MSTs) and very little regulation of volunteer organizations. 55 At their best, MSTs can provide key services that would otherwise not exist to a community in need. At their worst, MSTs are significant expenditures of time and money by all parties, including the host, primarily benefitting the volunteer and perpetuating the underlying disparities in power, resources, and access to health care that they seek to alleviate. 55 MST volunteers and organizations must be aware of and adhere to guidelines for best practices which include core principles such as adequate preparation and supervision of volunteers; mutuality and respect; active partnerships with stakeholders in the host community; regular evaluation of program impact; ethical patient care; and sustainability.

Introduction In the last two decades, there has been a surge in international volunteering in many sectors, including healthcare. Short overseas trips involving trained professionals, students, and lay volunteers have been described as medical missions, internships, and medical brigades. For simplicity, we will use short-term medical service trips (MSTs) as a unifying term. MSTs can range from days to months and may focus on disaster relief, education, and/or patient

care in chronically under-resourced areas. The trips are sponsored by a variety of organizations including educational institutions, faithbased non-governmental organizations (NGOs), secular NGOs, and for-profit companies. Although no central monitoring body exists, researchers estimated that in 2008 there were over 500 organizations offering MSTs with a conservative annual expenditure of $250 million [1]. These experiences are becoming increasingly common in all stages of medical training, and programs advertise them to attract top candidates. In 2018, the American Association of Medical Colleges reported that over a quarter of graduating medical students had participated in a global health rotation or volunteer experience during medical school [2]. The foundational purpose of medical volunteering is to address health disparities and inequitable access to resources that exist globally, a form of social injustice [3]. For example, sub-Saharan Africa is estimated to have 24% of the global disease burden but only 2% of the global physician supply [4]. MSTs offer an opportunity to “do something” for individuals with expertise, resources, and limited available time to volunteer. Research has also shown numerous benefits for the volunteers, including increased medical knowledge, improved diagnostic or procedural skills, insight into cost-effective medicine, and increased cultural competency [5–10]. Participants are more likely to enter primary care, obtain public health degrees, and engage in community service [5, 6, 10]. For the volunteers and their home communities, the benefits are clear. For host communities, the benefits are less consistent and are often mixed with unintended harms and burdens, as discussed below. At their best, MSTs can provide key services that would otherwise not exist to a community in need, resulting in mutual benefit for all parties. At their worst, MSTs are a significant expenditure of time and money for the host, primarily benefiting the volunteer

51 International Volunteering

and perpetuating the underlying disparities in power, resources, and access to health care that they seek to alleviate [3]. Most often, they are somewhere in the middle. >>Points of Emphasis 55 Benefits to volunteers are well described and include increased medical knowledge, improved diagnostic or procedural skills, insight into cost-effective medicine, and increased cultural competency [5–10]. Participants are more likely to enter primary care, obtain public health degrees, and engage in community service. 55 Benefits to host communities include provision of key services that would otherwise not exist.

There are no set blueprints or universal guidelines to help create global health ventures that are ethically sound and beneficial for all parties, though multiple guidelines have been published [11, 12]. Nor is there a regulatory body to monitor organizations or enforce best practices. For both the organizers and the volunteers, assessing the quality and impact of an MST and working towards best practices in global health first requires a familiarity with ethical concerns and potential harms.

Ethical Issues There are many issues inherent to global health work in general and to short-term medical service trips, in particular, that create ethical challenges and require careful thought.

The Context of Inequality By nature of the work, volunteers travel from wealthy, high-resource countries to areas lacking medical knowledge, personnel, equipment, or infrastructure. This differential in resources drives an often deeply embedded inequality in the perception of power and value of the hosts and volunteers– as high-

lighted by Case 2 below. This unequal valuation is one of the most insidious, ubiquitous, and damaging pitfalls of global health activities and originates partially in the assumption that knowledge is created in the Global North (higher-resource countries) and received by those in the Global South (lower-resource countries) [11]. It is visible in the language used in MSTs. Hosts are often as describes “recipients” or “beneficiaries”  – which assumes (often without evidence) that they are receiving something valuable and benefiting from a program. When students are engaged in a direct exchange program, students from high-income countries are assumed by many to be “helping” and students from low to middle- income countries are assumed to be “learning” [11]. The perception of a unidirectional flow of benefit sets up many downstream harmful practices including disregard for local providers and systems, over-reliance on the visitors’ own ideas and practices, and assumption of the value of the provided service without an effort to measure impact. In reality, for many MSTs, the benefits often flow in the direction of the visitor, and host communities only benefit if the services being provided are relevant, appropriate, and sustainable, which requires significant planning and direction from the host community. Because of social, economic or environmental factors, the host communities are inherently vulnerable and are at risk of exploitation by MSTs [3]. This vulnerability raises ethical concerns about informed consent, conflict of interest, justice, beneficence, and autonomy that permeate the topics below. >>Points of Emphasis 55 The perception of a unidirectional flow of benefit sets up many downstream harmful practices including disregard for local providers and systems, overreliance on the visitors’ own ideas and practices, and assumption of the value of the provided service without an effort to measure impact.

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55 Because of social, economic, or environmental factors, the host communities are inherently vulnerable and are at risk of exploitation by MSTs. This vulnerability raises ethical concerns about informed consent, conflict of interest, justice, beneficence, and autonomy that permeate the topics below

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 he Primary Mission and Conflicts T of Interest The primary mission of all MSTs should be to provide services or resources needed by the host community. But organizations and individual participants have variety of secondary motivations and objectives related to personal or professional growth, publicity, reputation, fundraising, trainee education, etc. These secondary objectives are inevitable and not necessarily destructive if their pursuit is always prioritized below the primary mission and is governed by common ethical standards. Exploitation occurs when secondary objectives are pursued unchecked, without these constraints, leading to undue influence on the primary mission. Examples include: an organization using unauthorized patient photos for fundraising and publicity; an individual posting patient photos on social media for self-promotion; trainees performing a new procedure to build their skills. Volunteers must critically assess the secondary objectives of both themselves and the MST organization and evaluate if they are interfering with the primary mission. >>Point of Emphasis 55 Organizations and individual participants may have a variety of secondary motivations and objectives related to personal or professional growth, publicity, reputation, fundraising, trainee education, etc. Exploitation occurs when secondary objectives are pursued unchecked, without constraints, leading to undue influence on the primary mission.

Limited Time and Resources In short-term MSTs, testing and interventions occur during a short period with limited ability for ongoing treatment or follow-up of outcomes. Providing follow-up care for chronic conditions after surgical procedures requires cooperation and integration with the existing medical system – which may have inadequate resources or expertise to care for the influx of patients associated with a visit by a volunteer organization [13, 14]. In many cases, MSTs provide care that amounts to triaging a large number of patients for further care. The triaging process can be complicated by limited diagnostic and therapeutic resources and medical conditions that are unfamiliar to visiting providers. If the volume of patients outsizes available resources, the care provided to a select group of patients or communities may be perceived as unequal. Additionally, the priorities guiding resource distribution may differ between the volunteers and hosts. For example, volunteers may focus care on diseases with the highest associated mortality while hosts may prioritize care of conditions with the greatest social stigma. MSTs frequently prioritize quantity over quality [3, 14]. The outcomes reported to sponsors and the public are often measured in total numbers of patients seen and treated. Measuring other outcomes that are better proxies of community benefit, such as local perception and long-term health or learning impact, is more complex and requires additional time and money. Bringing donated medications, supplies, and equipment is a common practice in MSTs. Donations can be helpful in filling a shortterm need. But without proper planning, the WHO notes that they can be “an added burden to the recipient health care system.” [15] Short-term supplies of medications for chronic conditions have limited utility and can be medically harmful. Donation of expired medications or supplies can be less effective, dangerous, and perpetuate the notion that a lower quality of care is appro-

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priate in poor communities. For supplies or equipment to be useful, they must be needed, wanted by providers, operate appropriately in the environment (for example, not require continuous electricity in a place with frequent power outages), have available funds and personnel for maintenance and repair, and staff must be trained to use them. The mounds of donated equipment that litter clinic and hospital grounds around the world reflect how commonly and easily these requirements break down. Finally, without local collaboration, the periodic provision of services and supplies can lead to delays in local leadership solving long-term health problems [3]. For example, if an organization sends volunteers 10 times per year to run a weeklong dermatology clinic, the local health system may be less likely to spend money on a permanent local nurse or medical officer (mid-level provider) with dermatology training who would be able to provide care year-round.

dard living conditions like access to water may recommend treatments that are not feasible. Patients may find it difficult to trust or feel comfortable with a volunteer who is dressed inappropriately by local standards (for example, a female volunteer wearing a skirt in clinic), or volunteers who do not adhere to customs surrounding gender (for example, a female patient being asked to undress by a male volunteer). Language barriers mean that volunteers require interpreters in clinic, which requires additional personnel, and can lead to additional gaps in communication depending on the experience and training of the interpreter. Additionally, if the volunteer is unable to explain conditions in a way that is understandable to the patient, the patient’s ability to make an informed, autonomous decision is diminished. By contrast, there is often a false assumption by Western volunteers that medical decisions must be made independently by all patients, when, in fact, medical decision making in many cultures is standardly done by the family unit.

>>Points of Emphasis 55 Providing follow-up care for chronic conditions after surgical procedures requires cooperation and integration with the existing medical system – which may have inadequate resources or expertise to care for the influx of patients associated with a visit by a volunteer organization. 55 Short-term supplies of medications for chronic conditions have limited utility and can be medically harmful. 55 Without local collaboration, the periodic provision of services and supplies can lead to delays in  local leadership solving long-term health problems.

Cultural and Language Barriers Without basic cultural competency, volunteers may be unable to effectively show respect to patients and colleagues, build trust, or communicate medical information in a way that is understandable and culturally acceptable. A volunteer who does not know stan-

>>Point of Emphasis 55 Without basic cultural competency, volunteers may be unable to effectively show respect to patients and colleagues, build trust, or communicate medical information in a way that is understandable and culturally acceptable. The competency of the volunteers and their ability to treat local medical conditions often varies widely.

Burden on Local Systems Supporting the MST can be a burden on the host communities in several ways. Hosts may divert time, energy, and resources to help coordinate the visitors’ itineraries, ensure their safety, and make them feel welcome. MSTs may recruit patients and health care staff from surrounding areas. The lack of personnel and diversion of potential payments from patients can undercut neighboring clinics. Additionally, health care systems may not

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be able to handle an influx of new patients that enter the system for follow-up after the MST has departed.

 ismatched Host Needs M and Services Provided

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The needs and priorities of the host community may differ significantly from services being offered and priorities of an MST. This can relate to the types of conditions that are being treated, the priorities of local health providers in caring for their community, or the priorities of the patients regarding their own health and well-being. The competency of the volunteers and their ability to treat local medical conditions often varies widely. To avoid this mismatch, MST organizers must have a relationship with local stakeholders and perform a needs assessment to plan what, if any, needs can be met in the format of a short-term volunteer trip. When interventions are offered by MSTs without prior collaborative planning, host communities may feel pressure to accept the proposal despite a significant mismatch because the care offered is “free,” and the hope that forming a relationship may open the door for more effective collaboration in the future.

Guidelines for Best Practices There are no universal guidelines for creating MSTs that are ethically sound and beneficial for all parties. Nor is there a regulatory body to monitor organizations or enforce best practices. However, a growing body of literature discusses these issues and multiple guidelines for MSTs have been published, most of which originate from authors from developed countries [11]. In studies that focus on the perceptions of host communities towards short-term medical service trips, the main concerns included: lack of real partnership and suboptimal involvement of host partners in decision making; lack of mutuality of learning in that volunteers deprioritize learning from hosts; lack of sustainability; lack of cultural awareness and

humility; and a mismatch between the needs and priorities of the community and the services being provided [16–21]. A recent study [11] reviewed 27 published guidelines for MSTs, then combined central themes from the guidelines with themes from studies examining the host perspective to create a list of core principles for best practices in MSTs. 1. Appropriate recruitment, preparation, and supervision of volunteers Volunteers selected to travel should have appropriate accreditation, medical knowledge, and skill sets. They should be screened to ensure that their general motivations for participating align with the mission of the MST and their skills match community needs. Before departure, the volunteers must be educated on basic global health ethical considerations and cultural humility as well as the history, language, culture, and health system of the host country or community. On location, organizations must ensure the safety of volunteers and provide adequate support and supervision. The organizations must set expectations for behavior and set limits for clinical practice (particularly for students and other trainees). 2. A host partner that defines the program, the needs to be addressed, and the role of the host community in directing and teaching the volunteers Local partners should play a vital role in performing a needs assessment, defining clear goals, prioritizing care, and carrying out the program. 3. Sustainability and continuity of programs MSTs should focus on sustainability of interventions, continuity of programs, and transitions of patient care to the local community. Capacity building through education and training local staff, longer MST durations, and repeat visits over time can all contribute to sustainability. 4. Respect for governance and ethical standards MSTs should adhere to ethical principles for patient care and avoid exploitation. MSTs should be financially transparent and operate within the confines of local legal and governmental regulations.

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5. Regular evaluation of program impact on host community The impact of MSTs should be assessed regularly and then adapted according to feedback and outcomes. 6. Mutuality and respect The host partners must be treated as true partners who have the essential knowledge of their community to make short-term volunteerism effective. MSTs must consider and respect local providers, governments, and patients. Volunteers and organizations must recognize the benefit they are receiving from the experience and demonstrate cultural humility and gratitude.

Barriers to Best Practices There have been an increasing number of publications and discussion on improving the quality of short-term medical service trips. However, there remains little to no regulation of MSTs and few incentives for organizations to adopt or adhere to best practice guidelines [11]. Barriers to adopting best practices and creating regulations exist in both host and sponsoring countries. The widespread belief that volunteering is inherently good and beneficial may limit the desire for data collection on efficacy. Within host countries, strict legislative restrictions may be resisted for fear they will deter participation of volunteers, and local governments may not have the interest or capacity to monitor thousands of volunteer programs. The relative vulnerability and

lack of power of host communities may prevent them from voicing justified criticism of MSTs. Without external legal or financial restrictions or incentives, MST organizations proceed according to their own vision of what is needed and what should be done as well as to achieve their other objectives in reputation, finance, training, recruitment, etc. Financial gains from donors or volunteer fees incentivize increasing the number of volunteers and minimizing the expense of working with local partners for planning and evaluation. There is often little information to guide volunteers attempting to assess the quality of volunteer organizations. There are no central agencies that provide evaluations, and organizations often lack transparency or make claims regarding host partnerships, volunteer preparation, and impact evaluation that are not done in practice [11]. In this current climate, it is the responsibility of all volunteers to be aware of guidelines for STMs and ask critical questions regarding an organization’s partnerships and practices. >>Points of Emphasis 55 There remains little to no regulation of MSTs and few incentives for organizations to adopt or adhere to best practice guidelines. 55 There are no central agencies that provide evaluations, and organizations often lack transparency or make claims regarding host partnerships, volunteer preparation, and impact evaluation that are not done in practice.

Cases

Case 1 At the end of a vacation to a beautiful but impoverished area, a U.S. dermatologist reached out to a local non-governmental organization to propose returning for a two-week trip with other U.S. dermatologists and trainees to provide dermatologic care in multiple remote villages. The local partners organized

the itinerary, arranged room and board, and advertised the presence of the clinicians widely. During the trip, nurses from nearby health centers were recruited to come help translate and try to arrange follow up-care. Hundreds of patients came to each village, where the team distributed topical steroids, emollients, sunscreen, and some topical and oral antibiot-

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ics that they had brought. For issues requiring additional workup or treatment, the patients were referred to either nearby clinics or larger hospitals, none of which had providers trained in dermatology. The team regularly diagnosed scabies, and made a large effort to educate patients about transmission and treatment. In every location, patients and community members expressed gratitude, and the team was satisfied that, while they could not fix every problem, there were many patients who were helped by their trip. After the team left, a member of the NGO followed up with community leaders and local providers to assess impact of the trip. He learned that during the trip, multiple local clinics were overwhelmed with work because nurses were re-assigned to help the visitors. Some patients presented to local clinics for follow-up and neither the patient nor the clinician understood the diagnosis. Some were referred for diagnostic testing or treatments that were not available. Two patients with Kaposi sarcoma were told they had uncomplicated stasis dermatitis so they delayed coming to the hospital for weeks. Multiple patients were upset because the visiting doctors implied

that they contracted scabies from sexual contact. The local providers were frustrated that they were not consulted or considered when this trip was planned. Case 2 A dermatology resident was selected to complete a one-month international rotation in a resource-­ limited setting. In her application essay, she stated that she has always felt a call to service, and saw the rotation as another opportunity to serve the most needy communities around the world. During the rotation, she was sometimes frustrated that she seemed to be working harder than any other staff at the hospital to provide quality care for patients. She had small altercations with nursing staff because she felt the nurses were not doing their job in clinic. After her rotation, the resident wrote an essay on the obstacles she experienced in providing care within the local system, her small victories during the month and the satisfaction she felt in improving the lives of patients and teaching local students and providers. This essay was published by her institution and disseminated in a segment of their newsletter called “Helping Hands.”

Analysis of Cases

Case 1 demonstrates many of the common pitfalls for MSTs. As is commonly the case, many of the issues that arose in this case were a result of suboptimal planning. While the dermatologist made an effort to partner and plan with a local NGO, the local health care providers were not considered or engaged. This led to breakdown in follow-up and continuity of care for patients after the MST, caused local clinics to be understaffed and alienated local providers. Instead of a needs assessment performed with local partners, the dermatologist offered a service that he felt would be helpful. The NGO or local providers may have suggested any number of different approaches including:

training local providers in basic dermatology, staying in one central clinic instead of moving (which would have decreased the burden of arranging the itinerary), etc. The MST made no effort to provide sustainable services, increase local capacity, or promote continuity of care. The volunteers distributed short-term supplies of treatments like topical steroids and sunscreen that are often needed for chronic conditions. The volunteers were not appropriately prepared on the local medical conditions and were insufficiently supervised, which may have led to “missing” the diagnosis of Kaposi sarcoma in two patients. Because of cultural difference,

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multiple patients were offended by the volunteers’ explanation that scabies is sexually transmitted, which builds mistrust in the MST and perhaps the health system as a whole. Finally, the volunteers left without feedback to assess the impact of their intervention. Unless the dermatologist invites honest feedback from the NGO, he will likely remain ignorant to the harms caused and to the ways in which his participation could be improved in the future if he wishes to continue MSTs. Case 2 highlights the very common perception in global health that people and ideas from wealthy, developed countries are more valuable and powerful than those from poor, developing countries. This perception is deeply imbedded and often unrecognized by those perpetuating this inequality. This case shows how this bias often manifests. Prior to departure, the applicant assumes that her one-month participation in a health care system and culture she does not know will provide great ben-

References 1. Maki J, Qualls M, White B, Kleefield S, Crone R. Health impact assessment and short-term medical missions: a methods study to evaluate quality of care. BMC Health Serv Res. 2008;8:121. 2. Association of American Medical Colleges (AAMC). Medical school graduation questionnaire: 2018 all schools summary report. Washington, DC: Association of American Medcal Colleges; 2018. Available at https://www.­ aamc.­org/system/files/reports/1/2018gqallschoolss ummaryreport.­pdf. Accessed 23 May 2019. 3. Stone GS, Olson KR. The ethics of medical volunteerism. Med Clin North Am. 2016;100:237–46. 4. Scheffler RM, Liu JX, Kinfu Y, Dal Poz MR.  Forecasting the global shortage of physicians: an economic- and needs-based approach. Bull World Health Organ. 2008;86:516–23B. 5. Miller WC, Corey GR, Lallinger GJ, Durack DT.  International health and internal medicine residency training: the Duke University experience. Am J Med. 1995;99:291–7. 6. Gupta AR, Wells CK, Horwitz RI, Bia FJ, Barry M. The international health program: the fifteenyear experience with Yale University's internal medicine residency program. Am J Trop Med Hyg. 1999;61:1019–23.

efit. On the ground, when the resident encounters differences in the health system or attitudes of local providers, she assumes that her opinions and attitudes are ‘right,’ which leads to altercations with staff. In her reflection paper, she discusses her triumphs over obstacles to provide what she views as ideal care. At no point does the resident consider that she may not know what is best for patients in an unfamiliar place. At no point does she express gratitude, display cultural humility, consider the limitations of her efforts, or reflect on the benefits she is receiving or the potential harms or ethical issues of her participation. She begins and ends anchored on the belief that her rotation was a venture in service and sacrifice that helped people in need on the other side of the world. This belief is shared and reinforced by her institution, which publishes her experience in their newsletter.

7. Thompson MJ, Huntington MK, Hunt DD, Pinsky LE, Brodie JJ. Educational effects of international health electives on U.S. and Canadian medical students and residents: a literature review. Acad Med. 2003;78:342–7. 8. Godkin M, Savageau J. The effect of medical students' international experiences on attitudes toward serving underserved multicultural populations. Fam Med. 2003;35:273–8. 9. Mutchnick IS, Moyer CA, Stern DT.  Expanding the boundaries of medical education: evidence for cross-cultural exchanges. Acad Med. 2003;78(10 Suppl):S1–5. 10. Ramsey AH, Haq C, Gjerde CL, Rothenberg D.  Career influence of an international health experience during medical school. Fam Med. 2004;36:412–6. 11. Lasker JN, Aldrink M, Balasubramaniam R, Caldron P, Compton B, Evert J, et al. Guidelines for responsible short-term global health activities: developing common principles. Glob Health. 2018;14:18. 12. DeCamp M, Lehmann LS, Jaeel P, Horwitch C.  ACP Ethics, Professionalism, Human Rights Committee Ethical obligations regarding shortterm global health clinicalexperiences: An American College of Physicians position paper. Ann Intern Med. 2018;168:651–7.

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13. Wolfberg AJ. Volunteering overseas--lessons from surgical brigades. N Engl J Med. 2006;354:443–5. 14. Wall A. The context of ethical problems in medical volunteer work. HEC Forum. 2011;23:79–90. 15. World Health Organization. Guidelines for Health Care Equipment Donations. Geneva (Switzerland): World Health Organization; 2000. Accessed at https://www.­who.­int/hac/techguidance/pht/en/1_ equipment%20donationbuletin82WHO.­p df. Accessed 23 May 2020. 16. Loiseau B, Sibbald R, Raman SA, Darren B, Loh LC, Dimaras H. Perceptions of the role of shortterm volunteerism in international development: Views from volunteers,local hosts, and community members. J Trop Med. 2016;2016:2569732. 17. Kraeker C, Chandler C. “We learn from them, they learn from us”: global health experiences and host perceptions of visiting health care professionals. Acad Med. 2013;88:483–7.

18. DeCamp M, Enumah S, O’Neill D, Sugarman J. Perceptions of a short-term medical programme in the Dominican Republic: voices of care recipients. Glob Public Health. 2014;9:411–25. 19. Green T, Green H, Scandlyn J, Kestler A.  Perceptions of short-term medical volunteer work: a qualitative study in Guatemala. Glob Health. 2009;5:4. 20. Nouvet E, Chan E, Schwartz LJ.  Looking good but doing harm? Perceptions of short-term medical missions in Nicaragua. Glob Public Health. 2018;13:456–72. 21. Kung TH, Richardson ET, Mabud TS, Heaney CA, Jones E, Evert J.  Host community perspectives on trainees participating in short-term experiences in global health. Med Educ. 2016;50:1122–30.

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Bridging the Divide, Virtually: Ethics of Teledermatology Ademide Adelekun, Monique A. Sager, and Jules B. Lipoff Contents Background – 60 Conclusion – 66 References – 67

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_6

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nnLearning Objectives

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1. Teledermatology is the use of communication technologies to provide dermatologic care to participants separated by distance. It has promising applications in meeting healthcare needs in underserved areas locally and globally. 2. Core ethical principles (beneficence, nonmaleficence, distributive justice, patient autonomy) must be considered and recontextualized in the new health care space that teledermatology creates. Providers must continue to maintain established standards of care including the collection of historical information, prescribing practices, and maintenance of continuity of care. 3. Providers and patients should be aware of the limitations of teledermatology to prevent undue harm. While there is evidence that it is a useful mode of care with diagnostic reliability, it cannot replace a total body skin examination and is less reliable in the evaluation of pigmented lesions.

Background Telemedicine is the use of communication technologies and electronic information to provide and support healthcare from a distance [1]. Certainly, telemedicine holds promise as a means of improving access to healthcare and, ultimately, health outcomes. Its rapid emergence derives from resource constraints, significant health disparities, and technological innovation. There are two primary modalities through which telemedicine is conducted, synchronous and asynchronous. Synchronous telemedicine (or live interactive) creates interactive healthcare encounters between participants separated by space, but not by time. It most commonly involves video conferencing technology in real time. Asynchronous (or store-and-­ forward) telemedicine, uses historical, laboratory and/or visual information to provide healthcare when participants are separated by both time and

space [2]. For instance, a dermatologist at an academic medical center may assist in the care of a patient in a rural setting by receiving images of the patient’s skin lesions and providing her expert opinion to the patient or local care team. Beyond the timing of the interaction, the relationship between telemedicine participants varies in different telemedicine care models: direct-to-patient care (also known as direct-to-consumer), teletriage, and provider-to-provider. Telemedicine has broad applications in medicine including rural health, telestroke, teleophthalmology, telepsychiatry and care for patients with limited mobility. These ­attributes have all been expanded and used extensively during the COVID-19 crisis. Dermatology is particularly well suited to telemedicine. Given that dermatologists rely on visual diagnosis, images combined with history are often sufficient to make diagnoses and management recommendations. Further, there is high demand for dermatology specialty care, with significant barriers to access both domestically and globally. Telehealth applications are well developed in the field of dermatology with emerging technologies including mobile teledermatology, teledermoscopy and teledermatopathology [3]. As with any emerging technology, teledermatology has not yet established a consistent role in the delivery of care. Teledermatology has been shown to save cost [2, 4]. Evidence suggests that teledermatology is also comparable in diagnostic reliability to conventional face-to-face ­consultations. In one study, diagnostic concordance between teledermatologists and clinic-based dermatologists was 74–84% with no statistically significant difference [5]. Other studies, however, have raised questions about reliability of images and history, as well as limited continuity of care in direct-to-patient teledermatology. While teledermatology creates an opportunity to improve access to care in underserved communities, it also poses unique ethical dilemmas that practitioners must consider. The case discussions below provide opportunities to analyze such ethical dilemmas using core principles of bioethics (. Table 7.1).  

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..      Table 7.1  Core principles and concepts in bioethics with associated applications and dilemmas in teledermatology Core principle or concept

Example in teledermatology

Potential dilemmas

Beneficence

Teledermatology could improve access to expert specialty care where dermatologists are not available. For example, a dermatologist makes a remote diagnosis of a skin cancer that otherwise would have been missed.

Advice may be given to providers and patients that lack resources necessary for follow-up care.

Non-­ maleficence

Teledermatology could prevent harm through greater access. For example, diagnosing a rash likely caused by a medication allergy, thus preventing future exposures to that medication.

Underserved areas can become dependent upon outside expert assistance, thus preventing the development of locally-based sustainable care.

Distributive justice

Teledermatology can improve access to specialized dermatologic care regardless of geographic location.

For-profit teledermatology systems may cater to wealthier individuals, paradoxically worsening healthcare disparities.

Patient autonomy

Teledermatology may create new opportunities for patients to choose when and where they will receive medical care.

Though teletriage may allow expedited access to care for those who need it most, it also limits patient choice and may increase wait times for those who prefer in-person care.

Informed Consent

Teledermatology providers must obtain consent from patients before pursuing treatment or sharing personal health information.

Sharing teledermatology patient information with colleagues without permission may enhance care but violate standards for informed consent.

Cases

1. You are assessing patient images in the United States as part of a store-and-forward teledermatology partnership with a regional clinic in southern Botswana. The next case you assess is a vulvar dermatosis. You are initially unclear about the diagnosis and ask your colleague in the department workroom for help. Together, you decide that your leading diagnosis is lichen planus and submit your response electronically to the team in Botswana. 2. You are a dermatologist working remotely for a direct-to-patient teledermatology application. You receive an image from a concerned patient. The patient reports a

heavy mole burden but has specifically noticed a new darkly pigmented lesion on her chest and has shared several images through the application. You diagnose the lesion as a seborrheic keratosis (SK) and provide recommendations and information to the patient, who is reassured. However, the patient did not include photos of a second lesion on her upper back that is later diagnosed as melanoma. You had not specifically recommended that she follow up to receive a full body skin examination in person with a dermatologist. 3. You are a provider at a high-­volume center with a notoriously long wait time for der-

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matologic consultation. In order to improve efficiency, your institution mandates that all new appointments must be triaged with a teledermatology consult. Only cases determined to be moderate-­to-­high risk are eligible for in-person appointments. 4. You are part of a national teledermatology system called DERM2U.  As part of your

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new marketing strategy, you create posters for public transportation that advertise quick and easy access to dermatologic care and prescriptions without the inconvenience of in-person visits at a clinic. The marketing campaign will be launched with the slogan, “All of your prescriptions, none of the stress.”

Ethical Issues and Case Discussions

Case 1 highlights the role teledermatology can play in increasing access to care in resource limited areas, thus promoting global health equity. Health equity means that every person, regardless of background, social or economic status, and geographic location, has a fair opportunity to attain his health potential. Beneficence, a core ethical principle, is translated as “doing good.” This principle necessitates acting in the patient’s best interests and in the interest of health promotion at large. In this case, through a partnership made possible by the application of teledermatology, specialty care is brought directly to healthcare providers and patients who otherwise would have no such access. Some regions of subSaharan Africa contain as few as 10 physicians per 100,000 inhabitants and no dermatologists [6]. Telemedicine has been proposed as a solution that can increase access to dermatologic care in various low resource settings, particularly in those where there is a high burden of skin disease [7]. This is not limited to international partnerships. In the United States, there are many examples of teledermatology reaching the needs of underserved communities including migrant farm workers, Pacific Islanders, patients seeking care at community health centers, and prison populations [8, 9]. In addition to the provision of care, teledermatology has the potential to be an educational resource for remote sites, sharing expertise and teaching clinicians about dermatologic diagnoses. One such example is the Institute of Tropical Medicine in Antwerp, a Belgian platform for dermatologic care for

people living with HIV. This program provides medical decision-making support and education to healthcare providers requesting consultation across multiple countries [10]. Teledermatology thus creates space for bidirectional learning and increased interest in global health. Evaluation of a virtual grand rounds curriculum based on teledermatology cases provided to United States-based attending physicians and medical trainees found that the curriculum was valuable. Participants described the curriculum as useful for understanding the diagnosis and treatment of skin disease in international settings, beneficial for understanding socioeconomic, cultural, and ethical issues in skin health as well as a source of increased interest in global dermatology [11]. Although case 1 leads with the potential for teledermatology to do good, could it also lead to harm? Non-maleficence is an ethical principle that requires avoiding harm of patients to the extent possible. Although there are numerous proposed benefits of teledermatology, the principle of non-maleficence must be considered in the implementation of teledermatology, particularly when providing care in underserved communities. What limitations to the provision of high quality care may exist? In our scenario, Western clinicians at a major medical center provide consultation or direct care to patients in various underserved countries. One argument against teledermatology is that the technology, though well intentioned, could create dependency in remote sites without addressing the more fundamental

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issues of poor infrastructure and human capital required to deliver high quality care locally [10]. Long-term independent sustainability must be the goal, with collaborative development of programs with regional stakeholders (teaching people to fish rather than giving them fish, so to speak). Emphasis on partnership as a source of education can help to mitigate these effects. Existing global health teledermatology partnerships have reported several limitations in providing optimal care. For instance, one institution reported the inability to see three-­dimensional imaging, ask follow-up questions, or perform biopsies at their partner sites. In addition to diagnostic limitations, this group also reported limited treatment options on site after diagnoses were made [7]. Thus, when outside providers offer consultation, they must partner with the host clinicians to assess available tools and resources. In the global health arena, telederm may often be better suited as a means of educating other healthcare providers rather delivering care directly to patients given concerns about dependency and technical considerations. Diagnoses and suggestions should not be offered to patients without first collaborating with the local team and ensuring all parties understand both the diagnosis and treatment options available for patients at sites, especially in resource-limited settings. Although the participating physician came to a leading diagnosis in case 1, there is still potential to cause harm. Teledermatology partnerships require a clear definition of the roles of actors, from triage, diagnosis, treatment, to long-term management. While providing diagnostic guidance is important, if the role of short and long-term management is not clearly assigned, the patient may incur undue harm. When acting as the primary provider for management, teledermatologists providing care remotely must ensure that it is both culturally sensitive and feasible within the patient’s context. A significant shortcoming in the provider’s approach to care in case 1 can also be recog-

nized through the ethical principle of autonomy and concept of informed consent. In this case, consulting a colleague who is not part of the patient’s care without the patient’s permission could represent lack of respect for patient autonomy, resulting from a breach of the patient’s confidentiality, and violation of standards of informed consent. Although the patient may benefit from additional opinions, autonomy demands respect for the patient as a rational individual, capable of making informed decisions regarding her health information. This is particularly important when providers are transmitting protected health information (PHI). Although specific to the United States, the HIPAA Privacy Rule offers a useful framework for how providers ought to engage with health information of patients in varying contexts. A primary aim of the HIPAA Privacy Rule is to ensure the protection of individual health information while allowing for the flow of information required to provide quality care [12]. International teledermatology programs must be implemented in cooperation with local physicians and governments to avoid patient exploitation that may occur as a result of patient care. For example, although images are typically not identifiable, local teledermatologists may unintentionally breach confidentiality for education and publication.

>>Points of Emphasis 55 Teledermatology can play an ethical role in increasing access to care in resource limited and/or remote areas, thus promoting health equity. 55 Teledermatology can also be an educational resource for providers in remote locations without access to specialists. 55 Potential pitfalls: lack of resources for sustained care, dependency on specialist, insensitivity to cultural practices, reduced patient autonomy Case 2 introduces direct-to-patient applications. These applications enable patients to share images and descriptions of skin condi-

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tions directly to remote dermatologists for diagnosis and treatment recommendations. They are likely to be an area of development and expansion in coming years. This case highlights an important limitation of these applications. While they can serve as an excellent method of care that may be diagnostically equivalent for particular lesions or eruptions, they still cannot replace a full body skin exam and may be less reliable with melanocytic lesions. A study comparing store-and-forward telediagnosis and conventional face-to-face diagnosis of pigmented lesions found telediagnosis to be inferior [13]. For telediagnosis, there was lower concordance with histopathology, and this concordance decreased further with dermoscopy [13]. If these limitations are not made clear, patients may be falsely reassured by examination of particular lesions of concern. Though the patient in this case received proper reassurance for one lesion, the reassurance may have contributed to delayed diagnosis of a melanoma in a different location with potential for increased morbidity and even mortality. Thus, while teledermatology is a powerful resource, its limitations must be made clear to providers and patients alike. As such, teledermatology must be used in conjunction with access to in-person care available whenever possible. The American Academy of Dermatology’s (AAD) position is that clinicians and practices participating in teledermatology “must have protocols for local referrals (in the patient’s geographic area) for urgent and emergency services” and, optimally, for the patient to be able to have an in-person follow-up with a local dermatologist if needed [14]. While it is ideal to envision that teledermatology services should only be offered if a specialist exists locally, this effectively eliminates the possibility of telecare for millions who live in underserved regions. Instead, if the consulting physician can train the local team on the appropriate follow-up for any acute problems, she can enable the team to manage its own

patients. Indeed, the AAD alludes to this when it encourages organizations to “have an active training program… for both the distant and receiving sites.” [14] Direct-to-patient applications assign data collection tasks and lesion identification roles to patients rather than providers [15]. Despite her heavy mole burden, the patient was not directed to seek further dermatologic care. Perhaps this was due to inadequate history taking, and certainly, the same could have occurred in person with a limited exam. A 2016 study of all mobile direct-to-patient applications in the United States Apple App Store found that none takes a history as thoroughly as recommended. Pertinent historical questions such as current medications and allergies were frequently omitted [15]. The direct-to-patient application in case 2 contributed to a disruption of care and negative health outcome for this patient. The potential for teledermatology to disrupt continuity of care is not merely hypothetical, with several studies demonstrating concerning findings to this effect. A 2016 study of teledermatology applications found that although some applications provided information to a patient’s primary care provider, none verified patient information or integrated findings into existing medical records [15]. A similar study of pediatric patients found that no applications verified patient age and identity, confirmed validity of parental consent, collected appropriate medical history, or coordinated with the patient’s primary care physicians [16]. Lack of regulation and standardization among direct-to-patient applications creates space for medical error and poses significant risk to patients. Even with appropriate history taking and coordination with primary care providers, these applications have several limitations, including inability to perform full body skin examinations, suboptimal evaluation of melanocytic lesions, and difficulty establishing continuity of care.

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>>Point of Emphasis 55 Although teledermatology is a powerful resource, its limitations must be made clear to providers and patients alike Case 3 explores distributive justice and the benefit of triage for population health. Triaging high- and low-risk cases, in theory, should ensure that the highest-risk cases are prioritized and receive appropriate care in a more timely manner than low-risk cases. Telemedicine has potential for effective screening and triage. In a dermatology clinic, teletriage could identify disease severity, assisting clinics in deciding when patients should be seen in person or for how much time. When the number of physicians cannot meet increasing demand for care, telemedicine can be an effective way to enhance access to care for those most in need. For example, patients at high risk for skin cancer can be seen sooner than those at low risk. Patients with acne or other benign conditions could even receive preliminary treatment immediately from a teledermatology physician, eliminating wait time they would otherwise experience. If implementation of teletriage allows physicians to complete more consults per day, it directly increases access to patients that day while decreasing the wait time for others. Studies to date have shown notable reductions in wait times through teletriage systems. At West Virginia University, the wait for spine surgery improved from 2 to 8  months to between 0.5 and 12  weeks [17]. Results have shown that teletriage also creates cost savings, which can be passed along to patients. Many conditions have been effectively triaged and managed proactively by use of telemedicine in a wide range of settings, from high-volume cancer centers to student-run free clinics [18, 19]. Case 3 also illustrates the challenges to patient autonomy posed by teledermatology. Although an institution may have protocols requiring teletriage, some patients may prefer in person visits and make such a request even for low risk conditions such as acne. The AAD states, “While teledermatology is a viable

option to deliver high-quality care to patients in some circumstances, the Academy supports the preservation of a patient’s choice to have access to in-person dermatology services and teledermatology services.” [14]. It follows that an in-person visit is still considered the standard of care for many conditions. If a patient does not feel a teledermatology visit is adequate for her needs, she should retain the ability to schedule an in-person appointment. However, in such a system, patients with lower risk conditions can expect a longer wait time for an in-person appointment, as higher priority conditions are often seen first. Case 3 also raises issues related to informed consent. According to the AMA Code of Medical Ethics, informed consent requires that patients are given information regarding the proposed medical intervention, that they have ability to withdraw or ask questions at any time, and that the patient’s consent be voluntary [20]. Patients must be made aware of the teledermatology triage system and consent to the process of teledermatology visits. Changing the method of care from in-person to telemedicine could alter the doctorpatient relationship. Some view telemedicine as a means of providing continuing or complementary care to patients a provider has already seen in person. The AMA’s policy regarding telemedicine emphasizes that a physician must first establish a relationship with the patient before telemedicine services are provided. However, in a direct-to-patient telemedicine system, an initial telemedicine consult may be the first interaction between a provider and a patient. In the United States, all states allow for the establishment of new doctor-patient relationships via telemedicine, though some states have restrictions for settings (medical facility) or modalities (live interactive, including telephone or video) [21]. If the patient and physician feel that they are unable to establish a patient-physician partnership remotely (e.g. from barriers of language/culture, lack of technologic capacity) or due to legal barriers, then the healthcare facitility must consider traditional in-person visits for the first appointment.

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>>Point of Emphasis 55 Teledermatology can enhance distributive justice and has potential for effective screening and triage. 55 Potential pitfalls include the risks of hindering patient autonomy and informed consent.

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Case 4 presents the issue of new dermatology direct-to-patient applications potentially encouraging overprescribing of medications. These applications may offer prescriptions in the vast majority of treatment plans, equating a virtual doctor’s visit with a prescription. This implicitly encourages consumers to use online applications for the purposes of obtaining prescriptions. Companies may exploit this by emphasizing the ease and convenience of having prescriptions delivered. The DERM2U application advertises, “Sit back and relax, your prescriptions will be delivered.” Marketing the ease of obtaining prescriptions could persuade consumers that teledermatology services are primarily meant for the purpose of easily obtaining prescription medications rather than accessing proper expert medical care, which may or may not include prescription medications. The AAD does not support teledermatology services that “offer easy prescriptions without an adequate history, examination and valid/proper patient provider relationship” and reminds physicians that they need to be licensed to prescribe in the location of their patients [14]. The National Telehealth Policy Resource Center currently states that, “There must be a patient-provider relationship, presumed to be established in an in-person encounter, before a prescription can be written.” [22].

Conclusion Teledermatology is a rapidly developing technology that can play a significant role in improving access to specialist care in underserved areas. It may also serve as a potential solution to triaging high demand healthcare services and creating a more convenient inter-

Case 4 also illustrates how increasing awareness of teledermatology services could serve both to increase and decrease healthcare inequality. Telemedicine has the benefits of bringing people into the healthcare system who previously would not have sought care, such as those with sexual health related complaints. In fact, some teledermatology applications were founded around providing quick and private sexually transmitted infection (STI) diagnoses and care [23]. The increased anonymity with a teledermatology application means that patients may be more likely to get timely diagnosis of STIs and early treatment, which can help prevent the further transmission. On the other hand, many current applications only take major private preferred provider organization plans (PPOs) or do not accept insurance at all. There are often upfront fees, upwards of $40–50 per visit, that may be difficult for patients to afford. These fees are often higher than a patient’s in-office co-pay. As a result, there is potential for a greater allocation of physician resources to wealthier individuals who can pay for care out of pocket. American Telemedicine Association (ATA) practice guidelines state, “Provision of service should not be conditional upon receipt of payment from the patient” [24]. However, teledermatology applications require patients to enter payment and/or insurance information in before they can schedule an appointment or access care. The DERM2U application charges $50 to submit an image to a doctor and receive a diagnosis within 48  hours. While this could be time saving and convenient for many patients, the system may not be affordable for those of lower socioeconomic status.

face for receiving medical care. Teledermatology can connect providers with patients across town or across the globe and is a promising strategy for addressing health disparities. It can be used to triage dermatologic care, ensuring that the most acute conditions receive care first. It is also unique space for bidirectional learning.

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Autonomy, beneficence, non-maleficence, 4. Whited JD. Teledermatology. Am J Clin Dermatol. 2001;2:59–64. and justice, the core ethical principles we 5. Levin YS, Warshaw EM.  Teledermatology: a uphold in traditional face-to-face patient review of reliability and accuracy of diagnosis and interactions, must continue to be respected in management. Dermatol Clin. 2009;27:163–76, vii this new virtual space. We must consider how 6. Lipoff JB, Cobos G, Kaddu S, et  al. The Africa Teledermatology project: a retrospective case to best apply these principles to the changing review of 1229 consultations from sub-Saharan nature of technology-based healthcare. These Africa. J Am Acad Dermatol. 2015;72:1084–5. case studies introduce ethical dilemmas that 7. Bobbs M, Bayer M, Frazer T, et  al. Building a may arise as teledermatology continues to global teledermatology collaboration. Int J grow. Dermatol. 2016;55:446–9. Respect for patient autonomy in handling 8. Norton SA, Burdick AE, Phillips CM, et  al. Teledermatology and underserved populations. of protected health information and benefiArch Dermatol. 1997;133:197–200. cence in developing and following through 9. Naka F, Lu J, Porto A, et al. Impact of dermatolwith a care plan must be emphasized. ogy eConsults on access to care and skin cancer Although teledermatology is an excellent care screening in underserved populations: a model for teledermatology services in community health option, its inherent limitations must be centers. J Am Acad Dermatol. 2018;78:293–302. acknowledged and made clear to patients to 10. Desai B, McKoy K, Kovarik C. Overview of interavoid harm and disruption of continuity of national teledermatology. Pan Afr Med J. 2010;6, care. Teledermatology through direct-to-­ https://www.­n cbi.­n lm.­n ih.­g ov/pmc/articles/ patient applications, in particular, provides PMC3063501/ 11. Yeung H, Sargen MR, Luk KM, et  al. additional convenience and anonymity that Teledermatology and teledermatopathology as may bring individuals into the healthcare syseducational tools for international dermatology: a tem who otherwise may not have sought care. virtual grand rounds pilot curriculum. Int J Yet the benefits of this convenience have the Dermatol. 2018;57:1358–62. potential to be exploited. Marketing expen- 12. Rights (OCR) O for C.  Summary of the HIPAA privacy rule. HHS.­gov. 2008. https://www.­hhs.­gov/ sive telehealth care for quick prescriptions hipaa/for-professionals/privacy/laws-regulations/ could potentially worsen disparities, rather index.­html. Accessed 5 Apr 2019. than mitigate them. The opportunity for 13. de Giorgi V, Gori A, Savarese I, et  al. improved access to patient care through teleTeledermoscopy in doubtful melanocytic lesions: is dermatology is vast, but not without potential it really useful? Int J Dermatol. 2016;55:1119–23. 14. American Academy of Dermatology. Position pitfalls. With ongoing consideration of core statement on teledermatology. 2016. https://www. ethical principles in its use and development, a a d . o r g / Fo r m s / Po l i c i e s / U p l o a d s / P S / P S teledermatology promises to provide needed Teledermatology.pdf. Accessed 21 June 2019. dermatologic services and continue to bridge 15. Kochmann M, Locatis C.  Direct to consumer the divide in access to care. mobile teledermatology apps: an exploratory

References 1. Telemedicine I of M (US) C on ECA of, Field MJ.  Introduction and background. National Academies Press (US); 1996. https://www.­ncbi.­ nlm.­nih.­gov/books/NBK45440/. Accessed 5 Apr 2019. 2. Whited JD.  Teledermatology. Med Clin North Am. 2015;99:1365–79. xiv 3. Coates SJ, Kvedar J, Granstein RD. Teledermatology: from historical perspective to emerging techniques of the modern era: part II: emerging technologies in teledermatology, limitations and future directions. J Am Acad Dermatol. 2015;72:577–86; quiz 587–8

study. Telemed J E Health. 2016;22:689–93. 16. Fogel AL, Teng J, Sarin KY.  Direct-to-consumer teledermatology services for pediatric patients: room for improvement. J Am Acad Dermatol. 2016;75:887–8. 17. Cui S, Sedney C, France JC, et al. Effects of telemedicine triage on efficiency and cost-effectiveness in spinal care [abstract]. In: National Association of Spine Specialists. Accessed September 2, 2020. Available from: https://www.spine.org/Portals/0/ A s s e t s / D ow n l o a d s / Re s e a rc h C l i n i c a l C a re / GrantWinners/Cui16.pdf 18. Otto C, Reidy DL, Robin S, et  al. Developing a telemedicine triage system to manage patient flow at a high volume cancer center urgent care. J Clin Oncol. 2018;36:e18517. 19. Chansky PB, Simpson CL, Lipoff JB. Implementation of a dermatology teletriage system to improve access in an underserved clinic: a

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retrospective study. J Am Acad Dermatol. 2017;77:975–7. 20. American Medical Association. Opinions on consent, communication, and decision making. https://www.­a ma-assn.­o rg/sites/ama-assn.­o rg/ files/corp/media-browser/code-of-medical-ethicschapter-2.­pdf. Accessed 28 Apr 2019. 2 1. American Medical Association. 50-state survey: establishment of a patient-physician relationship via telemedicine. 2018. https://www.­ama-assn.­org/ system/files/2018-10/ama-chart-telemedicinepatient-physician-relationship.­pdf. Accessed 21 June 2019.

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22. The National Telehealth Policy Resource Center. Online prescribing. https://www.­cchpca.­org/telehealth-policy/online-prescribing. Accessed 21 June 2019. 23. Buhr S. An app that detects STDs in the privacy of your own home. 2014. https://techcrunch.­ com/2014/06/19/an-app-that-detects-stds-in-theprivacy-of-your-own-home/. Accessed 8 May 2019. 24. McKoy K, Antoniotti NM, Armstrong A, et  al. Practice guidelines for teledermatology. Telemed E-Health. 2016;22:981–90.

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Unsolicited Dermatologic Opinions: Ethical, Moral, and Legal Issues Lionel Bercovitch Contents Legal Issues – 72  iffering Perception of Unolicited Diagnosis by Physicians D and the Public – 76 How to Offer Unsolicited Advice or Diagnosis [4] – 76 References – 76

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nnLearning Objectives 1. To understand the associated ethical and moral issues of unsolicited diagnoses in non-clinical settings. 2. To recognize the conditions under which it is appropriate to offer unsolicited advice. 3. To learn techniques for how to communicate unsolicited advice.

>>Points of Emphasis

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Physicians are generally not obligated to offer unsolicited medical advice. Virtue ethics, utilitarianism, and deontology may justify intervention by physicians for strangers in need. Morally relevant factors for determining whether physicians should act when a stranger is in need include the severity of the disease, degree of certainty about the diagnosis, presumption that the stranger would desire the intervention, and treatability of the condition. When appropriate, unsolicited medical advice should be offered privately and tactfully with the physician acknowledging her expertise and limitations and avoiding solicitation.

55 Q: When is a dermatologist not a dermatologist? On vacation at the beach? At a family gathering? While exercising at the gym? At the theater or waiting for a subway? 55 A: In reality, never. Dermatologists are skillful, trained observers. Even outside the clinical setting, they observe lesions and rashes on friends, relatives, and even complete strangers that, in the context of an established doctor-patient relationship, would likely demand attention and action, possibly urgently. But what should the dermatologist do when the individual in question is not a patient and has not sought the doctor’s opinion? Should the dermatologist offer an unsolicited diagnosis or advice? What if the consequences of inaction could be serious or even fatal for the individual (or an exposed third party) with the skin rash or lesion?

Although offering an unsolicited medical opinion may be regarded as an act of beneficence, the physician does not have a moral obligation to do so, even if inaction could lead to negative consequences for the affected individual [1]. Nevertheless, situations such as the above incite moral unease and pose ethical dilemmas for dermatologists. On one end of the spectrum are conditions that are well recognized and pose no immediate threat to the individual, such as obesity, smoking, excessive sun exposure or indoor tanning. On the other end are urgent, life-­threatening emergencies such as an accident or cardiac arrest, which are outside the scope of this chapter. In the former, the physician is not morally bound to offer his opinion or to intervene, while in the latter, the physician is professionally and morally (and in some countries, such as Germany and France, legally) obligated to act. In situations that are in between, in which the obligation of beneficence may exist, the physician can use his or her discretion in deciding how, when, or even whether to offer an unsolicited opinion [1]. While professional codes may be silent or noncommittal on offering guidance on non-­ clinical or informal encounters, Preller and Salloch [2] suggest that virtue ethics would dictate that the physician should avoid complacency and go beyond what is required by these codes and standards. They also raise the “contract theory” of professional obligations that holds the medical profession provides healthcare to the public, and in exchange for which, it is granted a near monopoly and the right to self-regulate the profession. They suggest that under some conditions (such as the ones imposed in cases involving strangers or non-patients) the obligation to intervene becomes absolute. Employing a utilitarian approach, they also advance an argument that if it is in the physician’s power to prevent loss of well-­being without sacrificing anything of “equal value”, there is an ethical obligation to intervene [2]. I would posit that a deontologic approach is more appropriate, i.e., one in which duty-based ethics obligates the physician to act, based on his or her expertise and the ability to avoid harm or to increase the well-being of the stranger, assuming that this

71 Unsolicited Dermatologic Opinions: Ethical, Moral, and Legal Issues

exceeds the personal harm to the physician or to the individual (e.g. loss of privacy, incorrect diagnosis). The degree to which the physician is morally obligated to act is affected by the seriousness and urgency of the risk to the individual or others (as in the case of transmissible diseases), the degree of certainty of the diagnosis, and the presumption that the stranger would want the physician’s opinion or intervention [1]. The more serious the consequences of inaction, the less certain the diagnosis needs to be before acting. The obligation to bring a diagnosis to someone’s attention also depends on how obvious it is to that individual that something is wrong. However, one cannot always assume that the person either knows how to access medical care or that the condition is even treatable. Unless the problem is treatable, there should be no obligation to offer an unsolicited opinion [1]. Indeed, offering an unsolicited diagnosis for a condition which is untreatable or for which no beneficial intervention exists could conflict with the physician’s obligation of non-maleficence were the patient to suffer psychological distress or act in a self-­destructive way. However, a strong argument could be made that the patient has an autonomous right to information about her health. A latent diagnosis that may remain so before causing harm imposes greater moral obligation upon the dermatologist. The presumption of latency may be erroneous. An early sign of Graves’ disease may, in fact, be an orbital lymphoma. An atypical melanocytic lesion may become an invasive melanoma before the next professional encounter occurs. The time course of latency or where on that timeline the patient now falls cannot be known to the observer. The bystander physician should possess appropriate medical knowledge to render an opinion but need not be a specialist in the field. A psychiatrist can suspect a melanoma [3] and a dermatologist can recognize exophthalmos as a sign of Graves’ disease (or worse). Even where there appears to be a professional obligation or duty to offer unsolicited advice, ordinary morality (such as “don’t

invade someone’s privacy”) may clash with professional morality (the obligation to heal the sick and relieve suffering). One’s personal morals and ethics may conflict with one’s professional duty and ethics, creating a dilemma for the physician [4]. Ratzan [4] has described the “bystander phenomenon”, summarized in . Table 7.1. In such situations, the likelihood of intervening may depend on the number of bystanders, socalled “diffusion of responsibility” [4], to which anyone who has been present at a cardiac arrest can attest. The bystander role can be ambiguous. How severe or urgent is the situation? Is there a threat of harm increasing with time and resulting from the bystander’s inaction? What are the bystander’s ethical obligations? A professional is no ordinary bystander by virtue of technical or medical expertise and professional duties. An ordinary bystander may be considered a Good Samaritan (loosely defined as someone who, having no obligation to do so, selflessly and voluntarily stops to aid someone in distress, without expectation of reward). In contrast, a physician’s professional duty may create an obligation to stop and assist regardless of private morals; under current laws, the physician would be classified as a Good Samaritan. To what degree this obligation applies to rashes and skin lesions is less clear than with a serious motor vehicle accident. Having any sort of relationship with the individual may make it easier and seemingly less intrusive to offer a diagnosis or opinion.  

..      Table 7.1  The Bystander phenomenon 1. Bystander must notice that something is happening 2. Bystander recognizes it as an emergency or crisis demanding a response 3. Bystander attributes to self responsibility for acting 4. Bystander must decide on effective intervention 5. Bystander must decide how best to intervene. From Ratzan [4]

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It is easier to strike up a conversation with someone that one even has just a passing acquaintance with. In addition, if the physician knows the individual, it might even make it possible to have a closer look at the lesion or rash without seeming overly intrusive. Furthermore, the ethics of caring suggests that there is a greater duty to those with whom one has a relationship. As with any intervention, there are certain risks and benefits to be considered. These are summarized in . Table  7.2. For example, consider the following scenario. The physician notices a pigmented lesion on someone’s back at the beach and comments that it looks a bit worrisome and recommends that it be examined by a dermatologist. The person goes to his dermatologist who removes the lesion, which turns out to be a melanoma in situ, and remarks “you’re lucky someone noticed that. It could have been very serious or even spread if the diagnosis had been delayed a few more months”. On the other  

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..      Table 7.2  Benefits and risks of unsolicited opinions Benefits 1. Physician-bystander has acted for the benefit of the recipient. 2. Physician may prevent serious consequences of untreated diagnosis by enabling timely intervention. 3. Physician has fulfilled a professional duty. Risks 1. Diagnosis may be incorrect. For pigmented lesions, there is a high probability of misdiagnosing melanoma, especially with the unaided naked eye. 2. Unnecessary, costly and potentially invasive investigations with potential morbidity may result. The risk is inversely proportional to the accuracy of the diagnosis. 3. Anxiety and depression may result. 4. Recipient may be stigmatized. 5. There is an invasion of privacy. Adapted from Ratzan [4]

hand, consider the following scenario: The same person goes to the dermatologist who tells him the lesion is nothing to be worried about. Based on the initial impression of the doctor at the beach, the patient is not fully reassured and insists on having the lesion removed. The wound dehisces, becomes infected, and heals with unsightly keloid scar. Pathology confirms the patient’s dermatologist’s benign diagnosis. These two scenarios illustrate some of the potential consequences of unsolicited diagnosis.

Legal Issues Ethical and moral issues need to be considered in light of legal considerations. Without obligation imposed by law, the dermatologist bystander has no legal duty to act regarding another person, as opposed to a moral obligation or professional duty. The law offers little guidance in this area. The mere act of intervention, however, creates a legal duty to act in a reasonable manner. Unsolicited diagnosis and opinion is a gray area legally because the physician’s legal duty to act is not created until there is a professional relationship. Once the physician intervenes, duty is created and obligations are imposed, the extent depending on the facts of the case. Exactly what those duties are in the case of an unsolicited diagnosis (as opposed to cardiopulmonary resuscitation or other urgent interventions) are unclear. However, generally, a doctor-patient relationship does not exist until both parties agree to enter into one. Good Samaritan statutes have traditionally been associated with emergencies and differ significantly from state to state. In general, these laws immunize the physician from liability due to acts of negligence but not “gross negligence” or willful, wanton, or reckless acts (which would likely not be covered by malpractice insurance either). It would be extremely rare, however, for a physician’s action in a Good Samaritan situation to rise to the level of gross negligence or involve intentional infliction of harm. Whether or not Good Samaritan laws would protect the dermatologist offering an unsolicited opinion is

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uncertain. Strictly speaking, “liability” requires a doctor-­ patient relationship, and offering unsolicited advice does not meet the legal definition of a doctor-patient relationship. Whether that is affected by the patient acting on such advice is a gray area.

Case 2 (below). What would you do if you saw this lesion on the arm of a complete stranger in the health club locker room?

Good Samaritan laws immunize the physician from liability due to acts if negligence, as long as these acts are not “gross negligence”. Whether such laws protect the dermatologist offering an unsolicited opinion in good faith is unknown.

Case 1 (below). What would say if you saw this on your son’s best friend?

..      Photo courtesy of Arthur Sober, M.D., used with permission

Case 3 (below). What would you do if you saw this on the finger of the barista serving you coffee at the local cafe?

..      Case 4 (below). What would you do if you were standing next to this person at the subway station while waiting for a train?

..      Photo courtesy of Leslie Robinson-Bostom, MD

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..      Photo courtesy of Carlos Wambier, M.D., with permission

..      Case 5 (below). Would you say something if you saw these lesions while a mother was changing the baby’s diaper at the beach? Would it be different if the mother was a family friend?

..      Case 6 (below): Should you say something if you encountered this rash on the parent of one of your pediatric patients or on the cashier at the supermarket?

75 Unsolicited Dermatologic Opinions: Ethical, Moral, and Legal Issues

Analysis of Case Scenarios

In case 1, the presence of a severe sunburn, while a well-known risk for skin cancer, does not pose an imminent danger to the son’s best friend. In addition to the embarrassment likely to be inflicted on the dermatologist’s son by offering the friend his unsolicited opinion or advice, it is likely that it would not be welcomed by the sunburned recipient. Although the offer of advice may be an act of beneficence, the lack of immediate benefit as well as the invasion of privacy and social embarrassment created would not justify it. If the sunburn affected a close relative or friend of the dermatologist, then perhaps it might be viewed as less intrusive and be more graciously accepted. Case 2 is somewhat more analogous to the situation of a serious accident in that a melanoma is suspected. How certain the dermatologist is of the diagnosis might influence how comfortable he or she is about offering advice or a diagnosis. Having some relationship with the individual with the lesion might also make it less awkward. Although the risk of harm might not be imminent, that is impossible to gauge on a cursory look, and in any case, if the differential diagnosis includes melanoma, the outcome might very well be fatal. The dermatologist has a professional duty to act that likely transcends his or her personal morality. If one would be grateful for an early diagnosis of melanoma for oneself, then the risk of invading another’s privacy and causing possibly needless anxiety is justified. Case 3 is more problematic. As in case 2, the differential diagnosis includes melanoma. The same considerations as in case 2 should apply. However, it is much more difficult to diagnose visually and the diagnostic workup is potentially more invasive. If one is a regular customer at the local café, and has seen the barista frequently enough to strike up a conversation, it might be possible to offer unsolicited advice that is not perceived as being intrusive as it might otherwise be. However, the potential risks in this situation are greater. Case 4 involves a very obvious mutilating lesion. It is hard to imagine that the individual involved is unaware of the lesion or the potential gravity of the situation. It is possible that the person might not have access to health care due

to lack of resources in which case diplomatically and sympathetically offered unsolicited advice might be graciously and even gratefully received, but it is very likely to be rejected or not acted upon. The professional duty to intervene in this very serious situation is probably mitigated by the advanced nature of the lesion and the fact that the affected individual almost certainly is or has been made aware of it. Case 5 involves an infant with multiple café au lait macules suggestive of NF-1 neurofibromatosis. The disease is genetic and not treatable. The main advantages of early diagnosis are timely surveillance for optic pathway gliomas, early intervention for cognitive or learning disabilities, and possibly genetic counseling for his parents prior to future pregnancies. However, one might assume that the infant’s pediatrician would sooner or later appreciate the significance of the café au lait macules and refer the child for evaluation. If the mother is someone familiar to the dermatologist, suggesting further evaluation might be less likely to be perceived as intrusive or as an invasion of privacy, but good intentions can sometimes destroy relationships [5]. Case 6 has some features of case 4, in that the rash is so obvious, the affected individual must be aware of it. Although untreated rosacea may lead to persistent erythema or ocular complications, it is certainly not life-threatening. There is no professional duty or moral obligation to intervene, but offering a probable diagnosis (which, unlike the lesion in Case 2, can be diagnosed with reasonable certainty by visual inspection alone) could be viewed as an act of beneficence. In the case of the mother who is in the examination room with her child, who already has an established physician-­ patient relationship with the dermatologist, offering a diagnosis and advice on obtaining treatment would probably not be viewed as intrusive. The case of the supermarket cashier is more problematic, especially if there is no prior relationship or acquaintance. In addition, there may be no way to convey the information privately. In that situation, the benefits likely do not justify the potential invasion of privacy and embarrassment that the cashier might experience.

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 iffering Perception of Unolicited D Diagnosis by Physicians and the Public

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In a survey study [6] of experienced dermatologists (residency-program directors) and dermatology graduate trainees, it was found that the experienced practitioners were significantly more likely to approach someone in the locker room with a lesion suspicious for a melanoma than residents (94.1% vs 77.6%), while there was no significant difference for less serious lesions, such as suspected squamous cell carcinoma, (41% vs 32.9%) in nonhealthcare settings. Neither group was likely to offer unsolicited advice for actinic keratoses (2.9% of directors vs 5.3% of trainees). Interestingly, lay individuals (although not a majority) are more likely than medical professionals to believe that unsolicited medical advice or intervention is appropriate, and a significant majority of physicians would not be inclined to intrude on a patient’s privacy to offer a diagnosis of suspected melanoma [7]. Beneficence, non-­maleficence, and respect for the individual’s privacy should guide the dermatologist, but in the end, one should also be guided by how one would want to be treated in the same situation.

..      Table 7.3  Conditions for offering unsolicited advice 1. Physician assesses probability of potentially serious disease to be high. 2. Physician judges the diagnosis to be latent and to remain so prior to a serious problem developing. 3. Physician possesses appropriate medical knowledge regarding condition. 4. Physician is reasonably certain of diagnosis. 5. Recipient would likely want to know diagnosis. 6. Problem is potentially treatable. Adapted from Ratzan [4] and Mitchell [8]

by necessity imperfect and preliminary and is subject to error. Keep the encounter confidential afterward. Acknowledgment  The author wishes to acknowl-

edge the advice and counsel of George E. Wakeman, Jr., Boston, MA regarding the legal aspects of unsolicited medical advice.

References 1.

 ow to Offer Unsolicited Advice or H Diagnosis [4] Offering unsolicited advice or diagnosis is fraught with difficulty. It should be done discreetly, tactfully, and quietly in a private setting (see . Table  7.3 for circumstances in which offering unsolicited advice or diagnoses might be appropriate). The physician or dermatologist should identify oneself as such, and not solicit the individual as a patient. One should never act or be perceived as being overly certain of the diagnosis. Refer the individual to his or her primary care physician or to the appropriate institution or specialist for follow-up. Reassure the stranger that your motives are not self-serving or financial, and that the diagnosis under such circumstances is

2.

3.

 

4. 5. 6.

7.

8.

Moseley R. Excuse me, but you have a melanoma on your neck! Unsolicited medical opinions. J Med Philos. 1985;10:163–70. Preller G, Salloch S.  Melanoma in the shopping mall: a utilitarian argument for offering unsolicited medical opinions in informal settings. Bioethics. 2018;32:193–8. Schildkrout B. Am I looking at a malignant melanoma? New  York Times. April 1, 2008. https:// www.­nytimes.­com/2008/04/01/health/views/01case.­ html. Accessed 9 Dec 2018. Ratzan RM. Unsolicited medical opinion. J Med Philos. 1985;10:147–62. Marion RW. Genetic drift: the unsolvable puzzle. Am J Med Genet. 1996;62:327–9. Wang JV, Korta DZ, Zachary CB, et al. Trends in unsolicited dermatologic opinions: a national survey. Dermatol Online J. 2017;23:20. Zwitter M, Nilstun T, Knudsen LE, et al. Professional and public attitudes towards unsolicited medical intervention. BMJ. 1999;318(7178):251–3. Mitchell EW.  The ethics of passer-by diagnosis. Lancet. 2008;371:85–7.

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Sharing Care with Physician Assistants and Nurse Practitioners Clifford S. Perlis Contents Introduction – 78 Ethical Considerations – 79  onsequentialism – 79 C Deontology – 79

Conclusions – 82 References – 82

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nnLearning Objectives 1. To understand the ethical principles that relate to employment of non-physician providers (NPPs) in dermatology. 2. To apply professional codes dealing with employment and supervision of NPPs. 3. To examine data regarding distribution, diagnostic accuracy and claims experience of non-physician providers in dermatology and apply these data to ethical analysis of current employment patterns of NPPs.

>>Points of Emphasis

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1. Non-physician providers (NPPs) can enhance patient accessibility to care. 2. The ethical principles of consequentialism and deontology play a significant role in whether inclusion of NPPs into a dermatologic practice are appropriate. Additionally, the motivation of the hiring dermatologist and informed consent of the patients need to be addressed. 3. With appropriate supervision, NPPs can be ethically incorporated into a practice.

Introduction Dermatology practices increasingly employ non-­ physician providers (NPPs), including nurse practitioners and physician assistants. From 2005 to 2014, the number of dermatology practices employing NPPs increased from 28% to 46% [1]. Current levels of participation are likely even higher. As could be anticipated from this increase in participation, NPPs billed for a significant number of dermatology CPT codes based on 2014 Medicare data. From a total of 36.9 m counts of dermatologic procedures, 11.51% (4.2 m) were billed by NPPs independently [2]. Several factors likely contribute to this increased utilization of NPPs in dermatology. NPPs may increase access to dermatology services, especially in underserved areas. For dermatology practices, NPPs are less expensive to employ and easier to hire than board-certified dermatologists. Relative to primary care NPP salaries, dermatology NPPs are better com-

pensated. In addition, there is a growing training infrastructure and support for dermatology NPPs through organizations such as the Society for Dermatology Physician Assistants, National Academy of Dermatology Nurse Practitioners and Dermatology Nurses Association, as well as formalized academic training programs. While NPPs are often discussed (and studied) as a single group, training requirements vary considerably. Physician assistant training requirements are: 55 typically, 4 years of college coursework, including basic and behavioral sciences 55 approximately 26  months of classroom training and clinical rotations in core and elective clinical disciplines 55 400–2000  hours of clinical rotations with an emphasis on primary care [3]. 55 Becoming a “dermatology” physician assistant does not require additional formal training. Most PAs receiving dermatology training “on the job” with a collaborating physician [4]. The core and historical model for physician assistants is “dependent,” based upon collaboration with and supervision by a physician. However, most physician assistants “work autonomously in a dermatology office much like a staff dermatologist seeing a wide range of ­ medical, surgical, and cosmetic patients but always with the support of a board certified or board eligible dermatologist.” [4] Current CMS rules require physician supervision of physician assistants; however, the proposed Physician Fee Schedule for 2020 contains potential changes to this requirement. In contrast to physician assistants, nurse practitioner training and implementation emphasizes independent practice [3]. 55 6–8 years as a full-time student to first obtain a Bachelor’s of Science in nursing, followed by a Master’s Degree or Doctor of Nursing Practice degree 55 750–1400 clinical hours associated with completing the Master’s Degree 55 additional 500–2500 clinical hours of internship training in a specialty

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Twenty-states and the District of Columbia permit the independent practice of nurse practitioners without collaborating physicians [5].

Ethical Considerations Integrating physician extenders may benefit patients and physicians alike when conducted in an ethical and appropriate manner. Certain applications, like increasing availability to see patients for cryotherapy to treat warts, seem reasonable. Independently managing complicated hospital consultations, however, may be more problematic. Navigating the gray areas in between benefits from understanding relevant ethical considerations. One consideration is whether the potential benefit of increased access to a professional with some dermatology training outweighs the drawbacks of care by a less highly trained individual. Also, is the collaboration with NPPs primarily adopted to improve patient care, or to maximize practice profits? In addition, is the NPP well-­enough trained to know when assistance is required and humble enough to do so, and is a qualified, collaborating dermatologist readily available?

Consequentialism Consequentialism ethics suggests that the consequences of one’s conduct is the basis for any judgment about the rightness or wrongness of that conduct. One form of consequentialism, utilitarianism, defines a good outcome as that which would benefit the most people. NPPs could improve the overall good for patients by improving access to care. Significant differentials in dermatologist density and availability between rural and urban communities are well-documented. Some argue that increased NPP involvement will ameliorate perceived long dermatology wait times. Existing practice data, however, suggest that NPPs tend to practice in the same areas as dermatologists. In fact, “the majority (2062[70.9%]) of NPCs [aka NPPs] were in

counties that have a density of dermatologists greater than 4 per 100 000 population.” [6] Accordingly, many NPPs may practice in areas already adequately served by existing board-certified dermatologists. A study from Ohio revealed that there was a shorter mean wait time (48 days vs 60 days) to see a dermatologist if the office also employed a physician extender, though this difference did not meet statistical significance. The mean wait time to see a physician extender was 19 days [7]. Another potential consequentialist argument for involving NPPs is cost savings. NPPs practicing independently are paid 85% of Medicare fees. It is not clear, however, if this decreased rate of payment translates into cost savings for the health care system at large. Some data suggest- that any potential savings per episode could be outweighed by greater costs from more visits or more interventions. One small recent study showed that: “Compared with dermatologists, PAs performed more skin biopsies per case of skin cancer diagnosed and diagnosed fewer melanomas in situ, suggesting that the diagnostic accuracy of PAs may be lower than that of dermatologists.” [8] Different prescribing patterns and visit frequencies may also contribute to cost differences. More extensive studies on the impact of NPPs on cost and quality in dermatology have yet to be published. >>Point of Emphasis 55 Consequentialist arguments in favor of employing NPPs in dermatology include lowering perceived waiting time for new patient appointments as well as potential cost savings. There are no statistically significant data to support these potential benefits at this time.

Deontology Deontological arguments suggest that moral actions are founded upon right or wrong which are based upon rules and not dependent upon the consequences. Outcomes do not carry ethical weight; adherence to universalizable rules determines whether or not an

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action is ethical. With respect to medical ethics, these principles have classically been presented as four principles: autonomy, beneficence, nonmaleficence and justice [9]. The principle of justice proves particularly relevant to the utilization of dermatology NPPs. Justice addresses issues of fairness and equality. Are the benefits, risks, and costs of a proposed approach shared justly? In the case of dermatology, it is not clear that employing NPPs always furthers justice. For example, while practice owners benefit from paying NPPs a lower salary than a physician, patients are the ones who experience potential risks or harms from receiving care by a lesser trained professional. Alternatively, justice appears to be upheld when patients accept seeing someone with less training in return for being able to see a practitioner sooner. Enhanced access to a dermatologically knowledgeable person, even if the person is less trained than a boardcertified dermatologist, may further the ethical goal of justice. Arguments can be made on either side. A related deontological principle is that of autonomy. Are patients fully informed that they may be seeing an NPP rather than a dermatologist? Furthermore, do patients understand the risks, benefits, and alternatives with consenting to receive care from one provider versus another? Dermatology offices must clearly inform patients of relevant differences so that patients may make informed decisions about where and how they obtain dermatology care. >>Points of Emphasis 55 The bioethical principles of justice (who benefits from the employment of NPPs-patients or the practices that employ them?) and autonomy (are patients fully informed of the differences between an NPP and a Board-certified dermatologist, and are they given an opportunity to make an informed decision about how they receive dermatological care?) are the most germane to this topic.

Professional codes of conduct guide ethical application of deontological principles in real

world practice. The American Academy of Dermatology (AAD) has prepared and regularly updates a “Position Statement on The Practice of Dermatology: Protecting and Preserving Patient Safety and Quality Care” that describes its position on utilizing NPPs. The statement, last revised May 21, 2016, states that: “When practicing in a dermatological setting, non-dermatologist physicians and non-physician clinicians such as nurse practitioners and physician assistants, consistent with their appropriate training and experience, should be directly supervised by an onsite dermatologist and have timely review of their medical records. For those rare instances, under extenuating circumstances, when a dermatologist is not available on site, there should be written protocols outlining how a patient is to be seen by a non-physician clinician. Within 24 hours, these patients should be presented to the supervising dermatologist, either in person or via teledermatology.” This AAD position clearly states that optimal care is delivered directly by board certified dermatologists, and that use of NPPs is appropriate only with close, usually on-site, supervision as part of the care team [10]. Similarly, the professional code of American Academy of Physician Assistants (AAPA) also highlights the collaborative though supervisory role of physicians in patient care. The code states, “Supervision should include ongoing communication between the physician and the PA regarding patient care. The PA should consult the supervising physician whenever it will safeguard or advance the welfare of the patient.” [11] As with the AAD statement, the ultimate responsibility for appropriate patient care rests with the physician. Despite the clear wording of the codes, it appears many physicians view them as more aspirational than practical. There are no well-researched data on the degree of NPP supervision or collaboration in dermatology. However, anecdotal evidence suggests that many practices employ a disproportionate number of NPPs to board-certified dermatologists. A related consideration is how should the supervising dermatologist reduce or manage his or her schedule in order to

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allow adequate time and energy to appropriately supervise an NPP. Furthermore, how many NPPs can a dermatologist realistically thoroughly supervise? >>Points of Emphasis 55 Despite the clear wording professional codes of the AAD and AAPA, it appears

many physicians view them as more aspirational than practical. 55 There are no well-researched data on the degree of NPP supervision or collaboration in dermatology. 55 Anecdotal evidence suggests that many practices employ a disproportionate number of NPPs to board certified dermatologists.

Case Studies

Case 1 Mr. Smith is a physician assistant in suburban Philadelphia. He works for a dermatology practice with 15 offices in the area, employing three board-certified dermatologists and 12 NPPs. A board-certified dermatologist never works in Mr. Smith’s office. However, the practice has told Mr. Smith that he should feel free to contact one of the board-certified dermatologists anytime he has a question or concern. Case 2 Ms. Williams has worked as a nurse practitioner in a dermatology practice for 5 years. She recently completed additional graduate school to earn a doctorate in nursing practice. Consistent with this accomplishment, she has

asked the practice receptionists and her physician colleagues to now refer to her as “Doctor.” Case 3 Dr. Johnson has been practicing dermatology for 5 years in Washington, DC.  Her practice has grown substantially so she now has a fourmonth waiting list for new patient appointments. She has begun interviewing both NPPs and board-certified dermatologists to add to her practice. Each of the cases above highlights different ethical concerns associated with employing dermatology NPPs. Several foundational ethical concepts may help inform the discussion: consequentialism and deontology. The AAD position statements will offer further insights.

Case Analysis

Case 1 This scenario with an unsupervised physician assistant practicing in a suburban metropolitan area is ethically problematic. From a consequentialist perspective, the area already has an adequate number of board-certified dermatologists. Furthermore, at least preliminary data suggest that the quality of care provided by an NPP is not comparable to that provided by more thoroughly trained dermatologists. With these considerations, it is difficult to identify ethical motivations for a dermatologist to support these arrangements. In addition, such an arrangement with the absence of supervision violates deontological principles clearly stated in codes of ethics by the AAD and AAPA.

Case 2 Ms. Williams’ request to be referred to as a doctor is technically accurate as she has a doctorate. However, this could confuse patients. Implying that Ms. Williams is a doctor of medicine misleads patients—in violation of both consequentialist and deontological considerations. It is most ethical to refer to Ms. Williams as a Doctor of Nursing Practice (D-NP) in contradistinction to the other Medical Doctors (MDs) or Doctors of Osteopathic Medicine (DOs) employed in the group. She has earned her doctorate, and deserves the appropriate title and respect such a degree confers. However, the title should not be allowed to mislead patients (or colleagues) regarding her background and training. It may

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be most accurate to refer to the members of the group in printed material as: “Janice Williams, DNP and Horace Jones, MD, FAAD” rather than as “Dr. Williams and Dr. Jones.” While both are technically correct, the former provides more accurate and less misleading information. Case 3 Considerations for hiring a colleague versus an NPP at a busy metropolitan practice raises ethically complex issues. Based on this particular practice, there is a substantial wait time, and hiring an NPP or another dermatologist would decrease this wait time. A con-

sequentialist calculation might weigh the benefits of increased access and ease of hiring at a lower salary an NPP against the risks of patients being cared for by someone with less training; this calculation might appear to favor employing the NPP in this case. Potential harms from less training are mitigated since the practice involves only a single office and therefore close collaboration would be possible. Dr. Johnson’s motives will substantially contribute to the ethical propriety of her hiring decision. Furthermore, the proposed arrangement is consistent with deontological principles expressed in the AAD code of ethics.

8 Conclusions The role of NPPs in dermatology continues to increase. Reasons for this growth are multiple, but one driving justification is that NPPs may increase patient access to otherwise limited dermatology care. Early data so far do not support this claim. Furthermore, data show that care by dermatology NPPs is not equivalent to that delivered by board certified dermatologists. Nevertheless, consequentialist and deontological positions support the ethical adoption of dermatology NPPs in some settings. Some factors important to these settings are a demonstrable lack of access to board-certified dermatologists, available NPPs who are or will be highly trained in dermatology and continuing close supervision by a board-certified dermatologist.

References 1.

Ehrlich A, Kostecki J, Olkaba H. Trends in dermatology practices and the implications for the workforce. J Am Acad Dermatol. 2017;77:746–52.

2. Qiaochu Q, Hibler BP, Coldiron B, Rossi M.  Analysis of dermatologic procedures billed independently by non-physician practitioners in the United States. J Am Acad Dermatol. 2018;S0190-9622(18)32574-X. doi: https://doi. org/10.1016/j.jaad.2018.08.047. 3. Nurse Journal Nurse Practitioner vs Physician Assistant. Available at https://nursejournal.­org/ nurse-practitioner/np-vs-physician-assistants/. Accessed 23 May 2020. 4. dermpa.­org/page/About_DermPAs. Accessed 9-7-­19. 5. Adamson AS, Suarez EA, McDaniel P, Leiphart PA, Zeitany A, Kirby JS. Geographic distribution of nonphysician clinicians who independently billed Medicare for common dermatologic services in 2014. JAMA Dermatol. 2018;154:30–6. https://doi.org/10.1001/jamadermatol.2017.5039. 6. Feng H, Berk-Krauss J, Feng PW, Stein JA. Comparison of dermatologist density between urban and rural counties in the United States. JAMA Dermatol. 2018;154(11):1265–71. https:// doi.org/10.1001/jamadermatol.2018.3022. 7. Zurfley F Jr, Mostow EN. Association between the use of a physician extender and dermatology appointment wait times in Ohio. JAMA Dermatol. 2017;153:1323–4. https://doi.org/10.1001/jamadermatol.2017.3394. 8. Anderson AM, Matsumoto M, Saul MI, Secrest AM, Ferris LK. Accuracy of skin cancer diagnosis by physician assistants compared with derma-

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tologists in a large health care system. JAMA Dermatol. 2018;154:569–73. 9. Beauchamp TL, Childress JF.  Principles of biomedical ethics. 8th ed. New  York: Oxford University Press; 2019. 10. American Academy of Dermatology. Position statement on the practice of dermatology: protecting and preserving patient safety and quality care. Available at: https://server.­aad.­org/Forms/Policies/

Uploads/PS/PS-Practice%20of%20DermatologyP ro t e c t i n g % 2 0 P r e s e r v i n g % 2 0 P at i e n t % 2 0 Safety%20Quality%20Care.­pdf. Accessed 23 May 2020. 11. American Academy of Physician Assistants. Guidelines of ethical conduct for the PA profession. Available at https://www.­aapa.­org/wp-content/uploads/2017/02/16-EthicalConduct.­p df. Accessed 23 May 2020.

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The Ethics of Integrative Medicine Tess Engel, Vivian Y. Shi, and Raja K. Sivamani Contents Introduction – 86 Ethical Principles – 86 Ethical Challenges – 86 Conclusion – 90 References – 91

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_9

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nnLearning Objectives

1. To apply the ethical principles of Western allopathic medicine to the practice of integrative and complementary medicine using a case-centered approach. 2. To examine how respect for the patient’s autonomy may clash with the physician’s duty of beneficence and non-maleficence in using unproven therapies or tests, and how best to resolve such conflicts. 3. To analyze how differing levels of evidence in contemporary Western medicine and complementary and alternative medicine can create ethical conflicts and tensions and how these are resolved by practitioners of integrative medicine.

Introduction

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Integrative medicine refers to the practice of medicine that incorporates multiple medical perspectives, including Western and Eastern philosophies, in the approach to patient care. This approach aims to employ conventional and alternative methods and to consider all factors that influence health in order to promote wellness. In particular, integrative medicine and integrative dermatology appear to have a role in the management of chronic symptoms, conditions, and illnesses [2]. Examples of practices that are added to a treatment regimen with integrative medicine, apart from Western approaches, include acupuncture, aromatherapy, massage therapy, meditation and dietary supplements. The challenge in integrative medicine is to balance the knowledge of traditions with the scientific rigor of modern research. These difficulties are frequently clinical in nature, but ethical dilemmas can frequently arise as well. Here we discuss some of the ethical challenges that may present when practicing with an integrative approach. >>Point of Emphasis 55 Integrative medicine refers to the practice of medicine that incorporates multiple medical perspectives, including Western and Eastern philosophies, in the approach to patient care.

Ethical Principles A key aspect of integrative medicine, as with any medical principle, is an understanding of its ethics. Both allopathic and integrative medicine share the ethical framework that upholds the importance of beneficence, nonmaleficence, respect for patients and patient autonomy [3]. Beneficence, the obligation to help patients, and nonmaleficence, the principle to do no harm, rely on accurate information on the efficacy and risks associated with treatments.

Ethical Challenges The ethical challenges of incorporating non-­ conventional treatment approaches for patients often stem from a need for rigorous scientific testing of therapies [3]. The “gold standard” randomized, double-blind, placebo-controlled trial for evaluating the efficacy of new medical treatments may not be well suited for all aspects of integrative medicine research. Some therapies that are focused on a single intervention, such as a dietary supplement, may be amenable to this approach. Other treatments that focus on body therapy, mind-body approaches, etc. may not lend themselves to study designs that can follow the “gold standard”. Furthermore, some aspects of medicine, irrespective of whether the approach is integrative or not, will rely on traditional knowledge and past experience. There is an inherent tension that develops in the decision making process when balancing varied levels of evidence when recommending therapies. The physician needs to balance clinical evidence, individual circumstances of the patient, the patient’s perspective, and the potential risks to safety for all treatment options. Additional ethical challenges arise in the doctor-patient relationship and duty to endorse treatments or dissuade patient practices while upholding patient safety and autonomy. In particular, autonomy is the right that patients have to make decisions about their treatments after being informed of potential risks, benefits, and alternatives and this can be hampered by the lack of evidence with both standard or alternative therapies.

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>>Point of Emphasis

evaluating the efficacy of new medical treatments may not be well suited for all aspects of integrative medicine research.

55 The “gold standard” randomized, double-blind, placebo-controlled trial for

Cases

Case 1 Let us begin with a discussion of patient choice and physician duty: A 32-year-old woman presents with a biopsyconfirmed malignant melanoma 0.5  mm in depth. She refuses standard of care (prompt wide excision) and states that she plans to use black salve that she has read about online. What is your duty as a physician? You know that black salve, also known as cansema, is a corrosive agent that is ineffective for the removal and/or cure of melanoma, and is listed by the FDA as a “fake cancer cure” [4]. However, it is widely advertised as a cure for melanoma and the patient is convinced that it will be a gentler and effective alternative to surgery. What do you do? How hard do you try to convince your patient of following standard of care beyond just providing information, and where is the line you must draw in order to respect patient autonomy? This situation requires an assessment of potential risk to patient weighed against the value of patient choice. The risks of progression to metastatic melanoma include death, so you will likely place beneficence as paramount and aim to take action to protect this patient’s life. But what if this patient had a more benign lesion, such as a cherry angioma? A lower risk burden may encourage a physician to be more lenient with treatment action and rely only on providing information and leaving the decision entirely up to the patient. This aligns with patient autonomy. Patient autonomy is valuable, for it allows patients to make decisions based on their own risk-benefit analysis. What is most important to the physician is not always the priority of the patient, but respecting patient autonomy can also result in procedures or treatments that cause more harm than help, [5] such as the use of black salve to treat melanoma instead of proceeding to surgical

excision. Weighing autonomy and beneficence is key in integrative medicine and all care practices. In this particular case, the integrative practitioner has to rely on existing evidence or lack thereof and consider this in light of potentially deadly consequences of an undertreated melanoma.

>>Point of Emphasis 55 What is most important to the physician is not always the priority of the patient, but respecting patient autonomy can also result in procedures or treatments that cause more harm than help. Case 2 Patient autonomy and protection come into question again in a situation involving parental choice and a child’s illness. For instance, take a mother and her 9-monthold son, who is presenting with severe atopic dermatitis. The mother has tried several prescription treatments with little improvement and has researched dietary modification as an approach to treat atopic dermatitis by avoiding triggering foods. She started to implement an elimination diet regimen for her son, who now is restricted to an entirely rice-water diet for fear that any other foods will aggravate his condition. What is your duty as a physician to treat this child? A diet of rice water puts the child at risk for severe malnutrition and kwashiorkor, the edematous form of protein-energy malnutrition that has been seen in other children with similar restricted diets in attempts to treat atopic dermatitis [6]. Malnutrition also further impairs the child’s ability to maintain and repair the skin barrier, which is already defective in atopic der-

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matitis [7]. Your patient cannot utilize his patient autonomy, so you must act in his best interest for him. An assessment of his current health status should direct you in the urgency with which you will approach this situation. Is he at risk for long-term complications of malnutrition, such as cognitive impairment and poor growth, and how willing is his mother to reintroduce key nutrients? The severity of this case may even lead you to report medical neglect to external agencies, work closely with the child’s pediatrician, or work closely with the child’s other parent. In some cases, reporting medical neglect may be mandated by state law. Integrative medicine encourages the use of alternative therapies outside of allopathic treatments currently available for conditions such as atopic dermatitis, but patient safety must be paramount. The American Academy of Dermatology advises parents who believe that a food allergy may be causing their child’s atopic dermatitis to consult with a dermatologist before eliminating foods from the diet and encourages a team-based approach to the dietary and medical treatment of atopic dermatitis [8]. In this situation, non-­maleficence must be taken into consideration, for a nutrient-deficient diet has the potential to deeply harm this child, and physicians have a duty to protect patients from harm. Nonetheless, it is also vital that the physician realize that food allergies are a possible contributor to chronic and intractable flares of atopic dermatitis. In addition, food restrictions need to be performed carefully in selective cases. Knowledge of integrative medicine will allow looking into other areas of the child’s life that could be contributing to his atopic dermatitis, such as bathing habits, topical oils or essential oils that may be used, assessment for change in diet, or evaluation of supplements, or environmental factors that may or may not be aggravating factors. From this, discussing treatment goals with his mother could provide much needed relief and ultimately strengthen the physician-patient relationship.

Case 3 Another prevalent challenge with integrative medicine involves aligning practitioner recommendations with available treatments. Does a treatment do what it claims to? Is what a supplement says on the bottle what is inside the pill, and who’s duty is it to answer this? Quality standards can become ethical standards when health and well-being are the intended outcomes of a product. For example, consider a patient presenting with a presumed allergic contact dermatitis from using “all natural” skin care products containing essential oils who refuses changing to a regimen recommended by the dermatologist or using prescription anti-­ inflammatory medications. Is it best to respect patient desires despite evident adverse effects, or to direct the patient to use products endorsed (and sold) by the dermatologist? This requires additional consideration when practitioners are selling the products and treatments they recommend in their office. The American College of Physicians published a position paper [5] stating that physicians should first consider their duty to nonmaleficence in providing high-quality products backed by evidence supporting their use. They should also avoid harm by considering a patient’s financial vulnerability and physical safety. Secondly, physicians have a positive duty of beneficence by making products available in-office that enhance the care provided by the physician and that are “reasonably related to the physician’s expertise and clinical practice” [5]. When deciding to recommend or sell alternative therapies, it is important to maintain a high standard of quality for evidence supporting product efficacy and information regarding product contents. Physicians should also note any financial conflicts of interest that they have when selling products that go beyond just making the sale (examples include serving as a consultant or stock owner for the company).

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>>Points of Emphasis 55 When deciding to recommend or sell alternative therapies, it is important to maintain a high standard of quality for evidence supporting product efficacy and information regarding product contents. 55 Physicians should also note any financial conflicts of interest that they have when selling products that go beyond just making the sale Case 4 With the growth of direct-to-consumer advertising in both television and in social media, there has been an explosion of tests that allow the consumer to take and interpret tests at home. For example, there are now tests available that are marketed as food sensitivity-testing instruments that can help a patient figure out food allergies or which foods to avoid. In such cases, a patient with a non-specific dermatitis may come into the clinic with the test results to help them figure out a better diet or declare that the results show what may be causing the dermatitis. The physician is confronted with a dilemma discussing treatment options for the patient’s rash, which may contrast with the patient’s strong view that the food testing results show the “true” path to treatment. Is the testing valid? How can the physician reframe the discussion to focus on evidence-based treatments? Will the patient build distrust if the physician does not believe the food sensitivity tests as proof of a cause for the patient’s rash? The physician is confronted with the growth of over-the-counter and direct-to-consumer testing as well as the growth of social media and Internet-based self-education [9]. The physician will need to balance respect for the patient’s autonomy against the duty of non-maleficence in order to protect the patient from unnecessary food eliminations that may induce malnutrition or avoidance medications that may have much greater efficacy for treat-

ing the patient. Patients may go online or utilize unvalidated testing and treat the information as definitive fact or, perhaps worse, a reason to avoid other therapies. Physicians should openly listen to the patient’s point of view and then discuss the testing in light of the strength of evidence. In particular, many over-the-counter food sensitivity testing devices typically utilize IgG based testing which has not been validated to predict food allergies. The physician will need to focus on the level of evidence, have or gain knowledge of the level of evidence in the tests that are available directly to patients, and then compare against other standard therapies to then offer evidence-based information to the patient. The physician also has a duty to advise the patient on the validity of testing and discuss the implications when considering therapies and to correct any pre-set biases that the patient may hold against allopathic medicine or biases to regard unvetted information as higher quality than that of a physician who is well versed in the current literature.

>>Points of Emphasis 55 The physician will need to balance respect for the patient’s autonomy against the duty of non-maleficence in order to protect the patient from unnecessary interventions. 55 Physicians should openly listen to the patient’s point of view and then have an obligation to discuss the any proposed treatments or tests in light of the strength of evidence. Case 5 Accurate diagnoses are essential for appropriate treatments and patients frequently have multiple options when considering who they will see as a provider. Consider a patient with inflammatory joint pain and psoriasis who seeks treatment from a complementary and alternative medicine (CAM) practitioner instead of starting with a

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dermatologist. Many patients are wary of Western-trained physicians including dermatologists and may seek out care from a non-physician. In these cases, what is the role of the CAM practitioner in establishing the correct diagnosis and referring the patient to a dermatologist? What if the patient was erroneously diagnosed as having atopic dermatitis instead of psoriasis and what could be the potential consequences? What if his joints were involved and this went untreated? What are the consequences and potential harm in delaying a diagnosis of a chronic condition that may include cardiovascular risk factors? Patients frequently seek alternative medicine to augment the medical care that they get through conventional medicine. Yet, there are many patients who are wary of Western medicine and would prefer first-line treatment with a CAM practitioner. The problem with this is that when a dermatologist is not involved, the possibility of a misdiagnosis increases. In this case, this patient may be at risk for joint involvement due to his psoriasis but this would have been

Conclusion In sum, broadening the traditional medical approach to include integrative medicine will involve practitioners in ethical dilemmas that call in question physician duties and patient beliefs. As more patients continue to use complementary and integrative medical therapies [3], it will be increasingly important to approach integrative medicine in a professional and informed manner to respect the patient and deliver exceptional care. Physicians swear by the Hippocratic Oath (or other professional oath) to practice beneficence and nonmaleficence and may additionally focus on respect for patient autonomy. As more and more research around the use of complementary and alternative medicines

missed if he was diagnosed as atopic dermatitis. In this case, the CAM practitioner has an obligation to ensure that the patient is informed of the most qualified person to diagnose the skin condition, which would be a dermatologist and that the joint pain is adequately addressed in the treatment plan. In this case, a patient needs to have access to all of the evidence-based information to make an informed choice as the patient needs to be informed that untreated or undertreated joint pain can have severe consequences. The key in this area is for practitioners to understand the limits of their training and to appropriately refer to a qualified specialist.

>>Points of Emphasis 55 There are many patients who are wary of Western medicine and would prefer first-line treatment with a CAM practitioner. 55 The key is for practitioners to understand the limits of their training and to appropriately refer to a qualified specialist.

grows, physicians will field more questions about the desire for integrative care. Staying informed of emerging research in integrative medicine will allow for more meaningful conversation with patients. Additionally, the natural tension between pharmaceutical and non-pharmaceutical approaches will continue to increase, as will patient demand for more holistic approaches to care. However, physicians need to be mindful of pre-conceived biases against Western medicine that may impede the patient from seeking appropriate care, delay appropriate care, or even result in inappropriate or harmful care. Thoughtful and critical evaluation of ethical situations within the integrative space will allow for prudent delivery of optimal patient-centered health care.

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References 1. Integrative Medicine Defined. Available: https:// www.­abpsus.­o rg/integrative-medicine-defined. Accessed 20 May 2019. 2. Mayo Clinic. Integrative medicine. Available from: https://www.­mayoclinic.­org/tests-procedures/complementary-alternative-medicine/about/pac20393581. Accessed 20 May 2019. 3. Maizes V, Horwitz R, Ethics R.  Education, and integrative medicine. Virtual Mentor. 2004;6(11):515–7. 4. U.S.  Food and Drug Administration. Products claiming to "cure" cancer are a cruel deception. Available from: https://www.­fda.­gov/consumers/ consumer-updates/products-claiming-cure-cancer-are-cruel-deception. Accessed 20 May 2019. 5. Entwistle VA, Carter SM, Cribb A, McCaffery K. Supporting patient autonomy: the importance of clinician-­ patient relationships. J Gen Intern Med. 2010;25:741–5. Available at https;//

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vhttps://www.­n cbi.­n lm.­n ih.­g ov/pmc/articles/ PMC2881979/. Accessed 11 Oct 2019. Chase HP, Kumar V, Caldwell RT, O'Brien D.  Kwashiorkor in the United States. Pediatrics. 1980;66:972–6. Hon KL, Nip SY, Cheung KL.  A tragic case of atopic eczema: malnutrition and infections despite multivitamins and supplements. Iran J Allergy Asthma Immunol. 2012;11:267–70. American Academy of Dermatology. Can food fix eczema? Available: https://www.­aad.­org/diseases/ eczema/child-triggers-food-fix. Accessed 12 Oct 2019. Massicotte A.  When to trust health information posted on the internet. Can Pharm J. 2015;148:61– 3. American Academy of Allergy, Asthma, and Immunology. The myth of IgG food panel tests. Available: https://www.­aaaai.­org/conditions-andtreatments/library/allergy-library/IgG-food-test. Accessed 24 Jan 2020.

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Cosmetic Dermatology and the Ethics of Enhancement Ruby Kwak and Alexandra Charrow Contents Setting Aesthetic Norms – 94 Cosmetic Procedures in Children – 95 Resource Allocation for Cosmetic Dermatology – 97 The Limits of a Patient’s Aesthetic Preferences – 98 Dispensing Cosmeceuticals in the Dermatology Practice – 99

Conclusion – 102 References – 102

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_10

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nnLearning Objectives 1. To understand the distinction between cosmetic dermatology procedure indications and the setting of aesthetic norms by dermatologists. 2. To understand the ethical complexities related to cosmetic dermatology conducted in the pediatric population. 3. To investigate ethical considerations when dispensing cosmeceuticals. 4. To review limitations of the patient’s personal aesthetic, especially as it relates to body dysmorphia and procedural addiction.

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“The lack of medical indications in cosmetic dermatology leaves the clinician with a duty to decide what care is ethically justified based on a combination of subjective and objective criteria. It engages ethical issues of self-determination and autonomy, human flourishing, compliance with problematic societal norms, and the just allocation of resources.” [1]

Cosmetic dermatology is a subspecialty that encompasses a wide range of procedures, the purpose of which is to improve the appearance of patients based on their specified requests. Procedures are frequently aimed at evening of skin tone, eliminating wrinkles, removing benign growths or hair, and combating or reversing skin changes related to aging. Conducted by physicians using medical equipment and knowledge in a clinical setting without the intent to heal, these procedures are ethically complex. Ethical issues arise regarding fully informed consent, the setting of aesthetic norms by physicians, the dispensing of cosmeceuticals and the treatment of patients with body dysmorphic disorder. Drawing the line between medical procedures aimed at returning the body to an agreed-­upon norm of health and cosmetic procedures aimed at enhancement of appearance is challenging, and many ethical dilemmas in cosmetic dermatology revolve around this distinction.

That cosmetic dermatology resides within medicine necessitates an investigation of medical norms and how these are challenged by cosmetic ones; of resources and whether their allocation to cosmetic dermatology impacts access elsewhere; and of body dysmorphia and the limits of a patient’s subjective aesthetic. Each of these issues including the setting of aesthetic norms, cosmetic procedures in children, resource allocation for cosmetic dermatology, the limits of the patient aesthetic, and the dispensing of cosmeceuticals will be discussed in this chapter.

Setting Aesthetic Norms While hypertension and diabetes are clearly defined based on objective measurements, aesthetic norms are subjective and flexible, adding ethical complexity to the care that dermatologists provide. When treating a patient with diabetes, it is clear how to define the disease state by objective criteria, determine a goal for health, and delineate appropriate therapy. When a person wishes to achieve a more beautiful appearance, however, there is often no medical norm to achieve, no objective way to define what is abnormal or a goal for treatment, only an aesthetic preference encompassing societal and subjective standards. Such societal standards expose the physician to a number of moral concerns. There is a risk, for instance, that by involving medicine in upholding aesthetic norms, conducting a given procedure or recommending a specific medication may further tie health to beauty and suggest that the dermatologist endorses a specific, racially-motivated beauty standard. Drs. Imadojemu and Fiester outline these concerns in their article reviewing the complexities of skin bleaching [2]. As they discuss, if a patient of color wishes to have lighter skin, it raises concerns regarding a physician’s role in upholding a standard

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with a racially biased or sexist basis. Drs. Setting aesthetic norms Imadojemu and Fiester couch this challenge Challenges Recommendations in terms of primum non nocere, or doing no Cosmetic procedures often Aesthetic harm. They suggest that prescribing bleaching do not involve a medical preferences of the norm; there may be no patient should be cream to a darker skin patient may uphold a clearly defined medical carefully explored specific racially biased preference and thus norm to achieve and followed rather cause macro-level harms. However, they Dermatologists are at risk than those of the acknowledge that a patient’s preference is parof involving medicine in physician amount, and physicians are duty-bound to upholding aesthetic norms Cosmetic that are often layered with procedures may be aid patients in their requests. Balancing the unfair societal norms and beneficial to the macro-level harm with a duty to treat is especultural standards based patient, albeit cially challenging in cases of procedural prefon age, gender, race and upholding erence. Auquino discusses blepharoplasties ethnicity problematic conducted to widen the palpebral fissures of Refusing to provide a societal norms; cosmetic procedure may beneficence and specific ethnic groups to create a more conflict with a physician’s harm of individual Caucasian appearance as an example of such obligation of beneficence cosmetic risk [3]. In many Asian and African countries, Selecting which patients to procedures should lighter skin is associated with higher social treat or not may rest on be carefully status, success, and empowerment, and dersubjective judgment of the weighed before recommending a matologists frequently perform skin-­ physician procedure lightening procedures [4, 5]. Improved quality of life is a goal of both aesthetic and medical dermatology; yet when physicians conduct aesthetic interventions, Cosmetic Procedures in Children the aesthetic norms they meet may be confused with medical ones. Physicians do have The practice of cosmetic dermatology, espeobligations of beneficence  – to help patients cially the upholding of beauty norms, is more who are suffering because they feel that they complex when treating children [see also look different and to listen to patients who Chap. 4]. Frequently, it is not young children request specific treatments for that reason. If who are determining an aesthetic beauty a societal standard benefits a patient with norm, but their parents. While giving a small respect to salary, employment, or good will, it child a cosmetic rhinoplasty might seem inapbecomes difficult for a physician to justify propriate and a decision best left to children withholding treatment. Moreover, by with- when they are able to consent for themselves, holding treatment in some cases where the removal of port wine stains and other birthreasoning is judged unfit by the physician, marks is frequently practiced by dermatolowhile providing others with treatment deemed gists on infants and young children without by the physician to be beneficent and reason- their consent to uphold a beauty standard set able, the physician is himself practicing dis- by their parents (and society) [7, 8]. criminatory behavior that may ultimately While a screaming child, restrained while disproportionately affect certain populations being treated for a port-wine stain (PWS), is a over others [6]. If and when a physician does patient on one end of the continuum of conopt to help a patient achieve his or her aes- sent, a teenager who does not want to be thetic preferences, it is critical that the aes- treated for acne is on the other end of the conthetic preferences be those of the patient and tinuum of consent. When a teenager refuses not those of the physician. treatment, that refusal is generally respected

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even if the aesthetic norms of the patient do not meet the aesthetic norms of most adults, and despite the commonly agreed-upon convention that acne is a disease and not merely a deviation from the aesthetic norm. However, when a child refuses treatment of a PWS, that decision is often not respected, even in cases when its removal may be for purely aesthetic reasons (there are cases in which removal of PWS may be for medical reasons, such as to prevent complications such as hypertrophy, which can lead to bleeding). In cases of cosmetic removal, the ethics regarding beauty norms is simplified if the child, too, does not like the PWS, but happens to dislike the means of removal, is afraid of the laser, or does not want to be restrained. Strategies can be employed that prevent or mitigate the trauma of PWS removal and may include the incorporation of child life specialists, toys, and distractions as well as brief sedation, general anesthesia, anxiolytic medications and topical anesthesia to help the child undergo the desired procedure while being distracted from the elements he or she does not like [9]. To avoid undue trauma, the current norm is to treat PWS in early infancy, when possible, to avoid restraints, traumatic memories, and general anesthesia. However, when the child does not mind the PWS and refuses treatment, intervention becomes much more complicated. The ethics of treating minors and their right to refuse treatment is complex and reviewed extensively in the literature. The American Medical Association (AMA) states in its Code of Medical Ethics that parents’ authority as decision makers does not preclude involving children in the decision making process [10]. Shared decision making and respect for the child’s wishes is emphasized, and the more mature, the better able to understand the risks and benefits of the treatment, and the more clearly the minor can state his or her preferences, the stronger the ethical obligation becomes to obtain the child’s assent. The code further states that parents’ authority over the child’s dissent for the treatment should be lim-

ited to cases in which immediate intervention is necessary to preserve life or prevent serious, irreversible harm. In case of dissent, the code recommends exploring the child’s reasons, developing an individualized plan of care that will best benefit the patient based on best available evidence, and when necessary, choosing alternatives that will not preclude important future decisions the child may want to make as an adolescent or an adult. When the efficacy or the long-term impact of the treatment is unclear, they recommend continuing to gather more data and exploring alternatives rather than hastily proceeding with the treatment. Most professional associations and pediatric organizations throughout the world maintain a standard that procedures only be conducted if they are deemed in the objective interest of the minor [11]. Because aesthetic judgements are not always made in the objective interest of the minor and because aesthetics are often subjective, treatment of many conditions including PWS must be considered within the context of medical norms. Certainly, in some cases, mature facial PWS develop hypertrophy and nodularity, becoming prone to spontaneous or trauma-induced bleeding and may be difficult, if not impossible, to treat successfully [12]. In cases where its primary impact on the child’s life is only cosmetic (e.g. a congenital nevus that the parent regards as unsightly but that does not bother the child, or a PWS with apparent erythema but no facial distortion or risk of bleeding), further consideration should be undertaken before electing to treat. Removal of congenital nevi or small PWS can be painful and traumatic to children and performing such treatments when the patient outright refuses may be an act of maleficence rather than of beneficence. Pediatric dermatologists should be wary of treatment when the imminent benefit is unclear and allow children to make the decision to forego early treatment of these lesions or to defer removal until such time that the patient is old enough to assent or consent to the procedure.

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Cosmetic procedures in children Challenges Recommendations Parents’ aesthetic standards rather than the child’s are followed Cosmetic procedures are sometimes performed against a child’s will Developmental anomalies do not necessarily mean abnormal health

Benefits and of a cosmetic procedure should be carefully assessed when it does not improve the health of the child AMA’s code of medical ethics states that child’s assent should be obtained in most cases; if a child does not assent to a procedure, it should only be conducted in cases of life-limiting conditions [10]

 esource Allocation for Cosmetic R Dermatology The demand for cosmetic dermatologic procedures is increasing rapidly. In 2017, more than 12 million dermatologic procedures were performed, up from 7.8 million in 2012, of which two-thirds were cosmetic in nature [13]. Medical resources are limited — from physician manpower and equipment to clinic space and procedural suites. Even if patients pay out of pocket, the scarcity of resources, especially the scarcity of the physicians themselves, remains. The number of dermatologists has been stable over the past few decades despite the increased demand, leading to longer wait times for patients to see a dermatologist for medical indications. Delays in treatment can lead to significant morbidity and mortality, and so some dermatologists call for an obligation to prioritize medical treatments over cosmetic procedures [1]. Future dermatologists may feel differently, however. In a survey of dermatology residents in the United States, 49.3% of residents reported that they plan to perform cosmetic

procedures in their practice after residency, [14] and more than 95% of the residents reported that they desire more training in cosmetic procedures during residency. Increased incorporation of cosmetic dermatology into the curriculum means less time allocated to other, potentially more medically oriented aspects of dermatology. Moreover, data suggest increased exposure to cosmetic procedures in residency may influence residents to pursue cosmetic dermatology careers when they complete training [14]. Educators and residency programs have an obligation first and foremost to train future dermatologists who can care for the medical, surgical and health concerns of patients. Dermatologists are guided by the same ethical standards as all other medical practitioners. As laid out by Daniel Callahan, a “physicians’ primary goals should be to promote and maintain health, and to care for and cure those with a malady.” [15] Certainly, cosmetic procedures may bring benefits to the patient, whether psychosocial or functional. These benefits, however, should not be pursued at the expense of caring for the ill. Unfortunately, in dermatology, the dichotomy between the medical and the cosmetic is not as clear a divide. Dermatologists treat many benign conditions such as tinea versicolor and mild acne that will never harm patients and are merely aesthetically unsightly. On the other hand, cosmetic dermatologists may improve outward signs of aging, allowing patients to earn more or feel more respected in their work. If there are fewer resources devoted to treating tinea versicolor and more to treating rhytids, the net benefit to society may be greater. There are, however, clear roles that dermatologists have in caring for and preventing serious illness including evaluating moles, diagnosing skin cancer, and treating severe infectious and inflammatory skin conditions. These roles should be prioritized when possible, especially in resource-poor setting.

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Resource allocation for cosmetic dermatology Challenges Recommendations Demand for dermatologic procedures is increasing rapidly, especially for cosmetic procedures Shortage of dermatologists continues, with longer waitlists to see dermatologists for medical concerns Medical resources are limited; re-allocation to meet cosmetic demand shifts resources away from important dermatologic conditions

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Dermatologists’ role as physicians should be prioritized and where possible, dermatologists should ensure they have some medical availability Medical and surgical dermatologic disorders with negative health and quality-of-life impacts should be prioritized over cosmetic concerns

 he Limits of a Patient’s Aesthetic T Preferences While respecting the patient’s personal aesthetic requests would seem a reasonable basis for treatment of the cosmetic patient, there are limits to using only the patient’s aesthetic. Sometimes, a patient’s aesthetic is a fixation, an obsession, an addiction to cosmetic treatments or a delusion. In these cases, it is critical that a physician recognize symptoms of disordered thinking or behavior. Body dysmorphic disorder (BDD) is defined by the American Psychiatric Association as “an obsession with one or more perceived defects or flaws in appearance that are not observable or appear small,” a fixation that can cause personal distress and result in obsessive behavior [16]. Dermatologists are better trained than cosmetologists and non-physicians to recognize when a thought pattern is disordered and ensure that treatment is directed at the ­disordered thought process and not at the perceived physical flaw. It is especially critical in these situations for the clinician to establish a good therapeutic alliance that allows for treatment goals to shift from the cosmetic to the psychological [17].

Understanding the motivation for cosmetic procedures and the context in which the motivation arises is also important. Some patients may be asking for procedures because their spouse, parent or other loved one would like them to have it. One must consider the possibility of coercion and the degree to which the motivation was cultivated through fear or manipulation. In such cases, the autonomy of the patient comes into question and the beneficence of performing the procedure becomes unclear. Informed consent becomes especially important here since coercion or manipulation, whether by family, social media, print media or entertainment, may lead patients to have unrealistic expectations of the benefits of specific procedures [1]. Using a patient’s aesthetic preferences to guide treatment is generally recommended, but sometimes these are not clearly defined, even to the patient. Many patients defer to the aesthetic judgment of dermatologists, asking them to perform procedures the latter deem necessary. This is challenging because the dermatologist’s aesthetic may be quite different from that of the patient. There is no one aesthetic standard applicable for all, as it varies significantly from person to person. Numerous factors such as society (including social media), culture, gender, age, race and ethnicity influence one’s own aesthetic standard. The dermatologist cannot reasonably ascertain this without the help of the patient, which is why consultation is an integral part of cosmetic dermatology. Konda discusses an extreme case of a blind patient requesting a filler treatment for her marionette lines to demonstrate this point. The patient further asks the dermatologist to perform other procedures he deems necessary [18]. It is unclear whether the patient is guided by her own aesthetic and which standard the dermatologist should follow. She cannot be an active participant throughout the consultation to guide the dermatologist. She cannot assess her face before and after the treatment to provide feedback. The line between beneficence (e.g. doing just the right amount) and maleficence (e.g. doing too much) becomes blurred.

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Konda suggests that despite her blindness, the patient still has the autonomous right to request cosmetic treatments, and her disability alone should not be grounds for denying care. Konda further suggests that although the patient cannot see the world, the world can still see her, which subjects the patient to the same societal aesthetic expectations as patients with sight. As such, performing the filler treatments may be an act of beneficence similar to acts conducted on patients who specifically request them. Studies have shown that wages are lower for less attractive people, and older (and older-appearing) people have a more difficult time finding employment [19]. On the other hand, there is a high risk of maleficence in such situations because a patient’s preference is unknown. In those circumstances, a highly asymmetric physician-­ patient relationship can result, in which the patient is relinquishing part of her autonomy to the dermatologist. In such situations, Konda recommends seeking third-party consultation from friends or family of the patient to ensure a more symmetric patient-doctor partnership. The limits of a patient’s aesthetic Challenges Recommendations Patient’s aesthetic preferences may be influenced by body dysmorphic disorder Patient’s aesthetic preferences may be influenced by others through coercion, fear, and perceived negative consequences of not obliging Patient’s aesthetic preferences may not be clearly defined

Dermatologists should be vigilant in recognizing psychological concerns and help patients get appropriate care Motivation should be explored especially when there are signs of obvious abuse or influence and concerns for abuse should be reported Thorough informed consent should be conducted with all patients to ensure they fully manage expectations Try to clearly establish a desired aesthetic preferences through consultation; if not possible, practice vigilance in balancing beneficence and maleficence in performing procedures

Dispensing Cosmeceuticals in the Dermatology Practice Cosmeceuticals, such as non-prescription creams, lotions, and masks are routinely sold in outpatient dermatology offices [20]. While such sales occur in 50% of practices, [20] there is disagreement among dermatologists as to whether this practice is ethical and in keeping with the duties of a physician. This disagreement is reflected in the policies of medical societies, some of which are conflicting. The American Medical Association (AMA)‘s Code of Medical Ethics, recommends against exclusive distribution of a particular product but allows for the sale of health-related goods at cost provided the products are scientifically valid and patients feel no obligation to purchase them [21]. The American Academy of Dermatology (AAD) developed a similar position statement that specifically outlined examples of unethical cosmeceutical sales including a prohibition against selling products in a coercive manner, at a high markup, without clearly listing ingredients, that are solely in the financial interest of the dermatologist, or that lack medical validity [22]. The position paper does, however, allow for some markup of products and leaves room for modest profit margins. At the heart of the disagreement over cosmeceutical sales is tension over whether medicine is a business and to what degree patients benefit from marketing within the field. Those who advocate strongly against any sale of cosmeceuticals in dermatology practices often suggest that medicine is a profession and a calling requiring specific skills and knowledge and the sale of cosmeceuticals sullies the calling, reducing the profession to a business [23]. Those who advocate for the sale of cosmeceuticals point to the opposite – that dermatology (as with the rest of medicine) is a business, a business with increasingly tight margins and lower reimbursements. For these physicians, cosmeceutical sales improve office solvency and provide patients with non-prescription skin care options [24]. Here, the principle of beneficence can be especially helpful  – as Castanedo-Tardan and

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Baumann ask in their article, The Ethics of Selling Skin Care, “Do patients benefit from purchasing products from their dermatologist in a way that they could not benefit if they did not purchase the products from their physician?” [25] They attempt, as best as possible, to collate the available evidence and quantify the benefit of cosmeceuticals for patients when sold by dermatologists. They note that there are limited, if any, differences in component ingredients between cosmeceuticals sold by dermatologists and similar products sold overthe-counter to a mass market. On the other hand, they note that by limiting the sale of products to only those that demonstrate benefit, the dermatologist who sells cosmeceuticals is helping the patient to find the best skin products possible. They point to evidence in the literature that suggests that patients buy cosmeceuticals not out of convenience but because they believe a product sold directly by a physician is of greater benefit or value, placing a greater onus on dermatologists to warrant that trust. It is specifically because patients trust dermatologists and their recommendations that

special care should be used if a physician opts to sell cosmeceuticals in office. Both the AMA and AAD recommend limiting product sales only to those with demonstrated benefit, but in differing over whether physicians can offer a markup, they are highlighting key philosophical disagreements in their respective approaches to dermatologists as business persons. Patients do not benefit from purchasing products at a mark-up. However, they may benefit from other aspects of the practice that are only made possible by virtue of marked­up cosmeceuticals. Perhaps there is free and convenient parking, made available by virtue of the profit margins from cosmeceuticals, or perhaps the practice is able to treat Medicaid patients by virtue of profits from their cosmeceutical offerings. One could argue that as markups of in-office product sales themselves offer no direct benefit to patients, there is a moral obligation to use these profits to directly benefit patients. However, it is highly doubtful this ever occurs in real-world situations, and reasonable markups are widely accepted in all other settings.

Case Scenarios

Case 1 Dr. Kai recently graduated from residency and has begun practice at the academic medical center near where she grew up. She has familiarity and comfort with cosmetic treatments from her residency and is looking forward to a robust practice caring for medical, surgical and cosmetic patients. One of her new general dermatology patients presents for routine skin examination and points to a vascular lesion on her temple that she has had since birth – it was never treated in childhood and is now somewhat exophytic. The patient reports that she has never minded the lesion but was told by a previous dermatologist that it could be removed with laser treatment. The patient recognizes it is benign and asks if Dr. Kai thinks it should be removed. Port wine stain (PWS) is a vascular anomaly that is benign in most cases. In this scenario, it is asymptomatic and there is no pressing medical indication for removal. The patient states that she was not bothered by it until another derma-

tologist mentioned it could be removed. As such, Dr. Kai should not be subjecting the patient to her own aesthetic standards especially when the patient did not originally find it bothersome. Dr. Kai should instead explore the aesthetic preferences of the patient and ensure her preferences are truly her own. In the interests of fully informed consent, the possibility of future hypertrophic changes should be discussed as this might affect the patient’s decision regarding treatment and its timing. Case 2 A 38-year-old patient with trisomy 21 comes to the dermatology clinic requesting botulinum toxin treatment for frown lines. He does not like the way they look and feels that they have deepened over the years. He lives at home but works at a local grocery store through which he has health insurance. He is part of a church group and socializes regularly with friends in his community. He heard how much it will cost and brought a credit card

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with him today to pay. His mother typically accompanies him to doctor’s appointments but has not come with him today. On exam, he has moderately prominent glabellar frown lines. The health needs of people with intellectual disabilities has long been a subject of discussion in medical ethics. Decision making, informed consent, assessment of capacity, and involvement of relatives and caregivers are areas to be considered when treating this population. This patient faces the same societal aesthetic expectations at his employment and in social interactions as other individuals, and the patient has requested the procedure based on those pressures. Risks and benefits should be communicated and his understanding of these solicited and assessed. If there is concern regarding his comprehension of the risks of the procedure or his decision making capacity, the physician should then consult with his healthcare proxy or, in this case, his mother, before proceeding. Case 3 A 45-year-old Asian-American woman presents inquiring about prescription skin-­lightening agents and about possible procedures to lighten her skin color. She does not have specific blemishes or dark spots she would like treated; rather, she wants whole body skin lightening. She states that she has felt discriminated against of darker skin and perceives that her colleagues with lighter skin are getting promoted more quickly. She has had numerous visits to various dermatologists in the past with the same concern. She appears significantly distressed and states that she has hated her skin color since she was very young. Skin lightening has been a controversial topic of discussion in cosmetic dermatology for decades. It is ethically complex because performing skin bleaching procedures risks the physician upholding racially motivated or sexist societal standards. It is complicated by the fact that skin bleaching may be of practical benefit to the patient (as discrimination against people of color is real and has practical ramifications). While, ideally, all dermatologists should be equipped to treat all patients and skin conditions, it may also be helpful in this context to direct the patient to a

physician who has special expertise and experience in treating skin of color to ensure any treatment is done with the highest of standards. Psychological aspects must be considered, especially in a patient who has had a long history of feeling ashamed of her skin color. Body dysmorphia must be explored in this context to ensure this concern is not an obsession, and possibly blurring judgment of the realistic benefits it will bring (e.g. a promotion at work). Safe skin-­ lightening products, such as creams, may be prescribed with clear instructions on side effects and the likely outcome. Helping her get psychological help may also be beneficial given her long-standing history of distress. Case 4 A 59-year-old woman presents to Dr. Nguyen’s dermatology clinic requesting additional filler for her lips. She has been seen in the practice on multiple occasions this year including 3 times this month and 6 times last month, for various cosmetic treatments. Most recently, she received botulinum toxin injections, filler to her lips, cheeks, and hands, and laser treatments of brown spots on the chest. She appears affable and jovial with Dr. Nguyen at her appointment, making jokes, and conversing in a linear manner, but continues to ask for lip filler despite lips that appear increasingly large and abnormal with each visit. She remarks in a somewhat joking manner that she doesn’t know what she would do without her lip filler and feels like she needs her “fix.” As with other psychological disorders such as body dysmorphic disorder, dermatologists must be on the lookout for a patient’s development of cosmetic procedure addiction. The literature describes many medical complications from cosmetic procedure addiction including granuloma formation and filler migration [26, 27]. Some harms are more difficult to quantify, however. Patients have a right to modify their bodies, even in ways that might seem extreme, but large deviations from the norm from with respect to filler injection or laser therapy should give physicians pause. Tattoo artists will often refuse to tattoo the face for fear of harming clients, even as clients specifically ask for such tat-

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toos. In that same vein, cosmetic procedures on the face that are done to excess may modify patients’ faces in ways that are harmful to them. Moreover, as physicians, dermatologists should

Conclusion

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Dermatologists are uniquely positioned to treat patients for a range of medical conditions and cosmetic complaints. Because physicians have dual roles, it is critical that they be mindful of when they are medicalizing beauty. If a patient presents with a specific complaint, such as removal of a congenital PWS, it is reasonable to facilitate its removal provided the patient has reasonable expectations regarding the effect removal will have on the patient’s appearance and life. However, if a patient has positive or ambivalent feelings about an aesthetically unattractive lesion, it is not the physician’s role to dictate aesthetic norms or preferences. Doing so ties the medical and dermatologic field to an aesthetic norm and can in turn suggest a connection between beauty and health dictated by the medical establishment. Dermatologists should instead strive to approach each patient’s clinical situation as unique while abiding by the same ethical standards across all patients.

References 1. Imadojemu S, Fiester AM. Are there moral obligations to cosmetic dermatology patients beyond informed consent? J Am Acad Dermatol. 2012;67:136–8. 2. Imadojemu S, Fiester A. Skin bleaching as dermatologic intervention. JAMA Dermatol. 2013;149:901–2. 3. Auquino YSJ. Big eye surgery: the ethics of medicalizing Asian features. Theor Med Bioth. 2017;38:213–25. 4. Hersch J. Profiling the new immigrant worker: the effects of skin color and height. J Labor Econ. 2014;26:345–86. 5. Ladizinski B, Mistry N, Kundu RV.  Widespread use of toxic skin lightening compounds: medical and psychosocial aspects. Dermatol Clin. 2011;29:111–23.

be trained to r­ ecognize when a thought process is disordered and ensure that treatment is directed at this and not at the perceived physical flaw.

6. Cantor JD.  Cosmetic surgery: when fifty doesn’t feel fabulous. Virtual Mentor. 2007;9:410–3. 7. Strauss RP, Resnick SD. Pulsed dye laser therapy for port-wine stains in children: psychosocial and ethical issues. Pediatrics. 1993;122:505–10. 8. Kelly JB, Makkar HS. Ethics in pediatric dermatology. Clin Dermatol. 2012;30:471–5. 9. Alegre-Sanchez A, Perez-Garcia B, Boixeda P.  Pulsed-dye laser treatment of port-wine stains in children: useful tips to avoid general anesthesia. Pediatr Dermatol. 2017;34:619–21. 10. Del Rio A, Rinaldi R, Napoletano S, di Luca NM.  Cosmetic surgery for children and adolescence. Deontological and bioethical remarks. Clin Ter. 2017;168:e415–20. 11. Sabin, JE. Amendment to E-2.2.a, “pediatric decision making.” opinion of the council on ethical and judicial affairs. Opinion, Ethical and Judical Affairs. https://www.­ama-assn.­org/system/ files/2019-05/a19-ceja-op1.­pdf. Accessed 1 Jan 2020. 12. McClean K, Hanke CW. The medical necessity for treatment of port-wine stains. Dermatol Surg. 1997;23:663–7. 13. American Society for Dermatologic Surgery. Skin cancer, cosmetic procedure and patient demographic trends revealed. www.­asds.­net/Skin-Experts/NewsRoom/Press-Releases/ASDS-Members-PerformedNearly-12-Million-Treatments-In-2017. Accessed 1 Jan 2020. 14. Nielson CB, Harb JN, Motaparthi K.  Education in cosmetic procedural dermatology: resident experiences and perceptions. J Clin Aesthet Dermatol. 2019;12:E70–2. 15. Callahan D.  The goals of medicine. Setting new priorities. Hast Cent Rep. 1996;26:S1–27. 16. American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington: American Psychiatric Association; 2013. 17. Saade DS, de Castro Maymone MB, Vashi NA. The ethics of the cosmetic consult: performing procedures on the body dysmorphic patient. Int J Womens Dermatol. 2018;4:185–7. 18. Konda S, Kathrotiya P, Grant-Kels JM. The blind patient and the cosmetic dermatology consultation: who defines beauty? J Am Acad Dermatol. 2017;76:769–71. 19. Hamermesh DS, Biddle JE. Beauty and the labor market. Am Econ Rev. 1994;84:1174–94.

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20. Ogbogu P, Fleischer A, Brodell R, Bhalla G, Draelos Z, Feldman S.  Physicians’ and patients’ perspectives on office-based dispensing. Arch Dermatol. 2001;137:151–4. 21. American Medical Association. Opinion 8.063. Sale of health-related products from physicians’ offices. Code of Medical Ethics. Available at: https://journalofethics.­ama-assn.­org/article/amacode-medical-ethics-opinions-sale-and-dispensing-health-related-products/2010-12. Accessed 21 Nov 2019. 22. American Academy of Dermatology Position Statement on Dispensing. September 26, 1999. https://server.­aad.­org/Forms/Policies/Uploads/PS/ PS-Dispensing.­pdf. Accessed 21 Nov 2019.

23. Miller RC.  Dermatologists should guard their patients’ purse not pick their pockets. Arch Dermatol. 1999;135:255–6. 24. Gold MH.  Dispensing cosmeceuticals from the office. Virtual Mentor. 2006;8:503–8. 25. Castanedo-Tardan MP, Baumann L.  Ethics of selling skin care. Clin Dermatol. 2009;27:355–8. 26. Rongioletti F, Atzori L, Ferreli C, Pau M, et  al. Granulomatous reactions after injections of multiple aesthetic micro-implants in temporal combinations: a complication of filler addiction. J Eur Acad Dermatol Venereol. 2015;29:1188–92. 27. Lin CH, Chiang CP, Wu BY, Gao HW.  Filler migration to the forehead due to multiple filler injections in a patient addicted to cosmetic filler. J Cosmet Laser Ther. 2017;19:124–6.

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Lying in Patient Care: Ethical and Moral Issues Stephanie K. Fabbro Contents

Therapeutic Privilege: Ethical and Moral Arguments – 106 L ying on Behalf of Patients to Third Parties: Ethical and Moral Issues – 108 Conclusion – 111 References – 111

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nnLearning Objectives

However, every physician has been in a clinical situation in which lying could be considered ethically warranted for various reasons; the difficulty is in making a determination of when these special circumstances may apply. Doctors have cited several reasons for lying to patients, including not wanting to confuse patients, avoiding pain or anxiety, or maintaining patient hope [4]. In these situations, a physician may rarely invoke therapeu>>Points of Emphasis tic privilege, in which he or she will lie or omit 55 Withholding potentially distressing informedical information to the patient. Although mation from patients by physicians, known this is rooted in paternalism, therapeutic privas therapeutic privilege, may be justified in ilege is used in an attempt to reduce potential rare circumstances. psychological or physical harm to the patient 55 When considering withholding informaand has been justified by the principle of tion from patients, physicians should beneficence. inquire about patient preferences for such Fried and Perlis discussed deontological information and be transparent about the and consequentialist arguments against theruncertainty and difficulty of the situation. apeutic privilege [5]. Deontological argu55 Although there may be compelling reaments ascribe morality of actions based on sons to lie on behalf of particular patients their accordance with predetermined rules or to third parties, over time this practice duties rather than outcomes; this is best summay harm others, erode public trust in marized in Kant’s phrase, “the moral worth physicians, and lead to pursuit of selfof an action does not depend on the result interest by physicians. expected from it” [6]. Deontological ethics specifically prohibits lying. Truthfulness— not lying—is a perfect duty. Perfect duties are Therapeutic Privilege: Ethical generally negative duties, which every ratioand Moral Arguments nal being is obligated to abide by. Conversely, imperfect duties, such as doing good to othThe fact that physicians should not lie to their ers, are encouraged but not always morally patients is one that is voiced by most profes- obligatory [7]. sional oaths and organizations. The American Utilizing the concept of the perfect duty to Medical Association states that “A physician absolutely prohibit lying may produce uninshall . . . be honest in all professional interac- tended results, as this does not take into tions, and strive to report physicians... engaging account the nuances of every clinical situation in fraud or deception, to appropriate entities” [8]. Two different obligations may sometimes [1]. A critical way physicians value patient conflict. Kant’s interpretation of beneficence autonomy is through the use of informed con- requires us to make sacrifices in order to help sent; for patients to be able to participate in others achieve their moral ends, but full disinformed consent, they must know their diagno- closure and best serving that patient’s ends do ses, the purpose of the proposed medical inter- not always go hand-in-hand. In this hypothetventions, risks and benefits associated with the ical, the patient’s prospects for achieving one’s interventions, alternatives to the proposed inter- moral goals could actually be inhibited by full ventions, and consequences of refusal or non-­ disclosure; thus, therapeutic privilege could be intervention [2]. Historically, a patient’s right to ethically permissible in certain situations [9]. truth has been minimally emphasized; now, it is Consequentialists argue the morality of an considered one of the very cornerstones of clini- action is based on its outcomes, with a good cal ethics [3]. deed being one that results in maximum good.

1. To discuss historical perspectives on medical decision making. 2. To review informed-consent standards. 3. To define therapeutic privilege and identify instances when therapeutic privilege may be ethically appropriate. 4. To review ethical arguments for and against lying on behalf of patients to third parties.

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107 Lying in Patient Care: Ethical and Moral Issues

The most common interpretation of consequentialist ethics argues that therapeutic privilege could be ethically acceptable due to the fact that it has the potential of furthering the greater good of the patient’s well-being. In this case, therapeutic privilege could potentially better promote a patient’s interests than truth telling would. Others interpret consequentialist ethics in such a way that deceptive statements by physicians could not be ethically permissible. Since patients cannot exercise autonomy, an essential good, without having access to clear and honest information, therapeutic privilege eliminates the prospect of patient autonomy [5]. Sokol proposed a “deception flowchart” to assist physicians with determining if lying is ethically acceptable under certain situations. In this flowchart, in order to be ethically permissible, the purpose of the deception ­ must be to try to prevent physiologic or psychological harm, to enhance hope, to prevent great distress, or to uphold patient preferences to not want information. Only if the deception attempt is likely to succeed, the objectives cannot be met without recourse to deception, and the justifications for the deception outweigh the objections, then deception can be considered [10]. This allows physicians to have several moral safety checks before they can justify deception, and, using the flowchart, one can see only a small amount of proposed deception would be considered to be ethically permissible. One criticism of the deception flowchart is that it puts the physician fully in control of the decision of whether deception is ethically acceptable. There is no participation or consideration of third parties, such as family or other health-care providers. Culturally, truth-telling norms may vary widely throughout the world and some cultures value partial and full non-disclosure for the sake of the patient’s well-being. Some Asian, Middle Eastern, and African cultures, for example, particularly reject the concept of truth telling directly to the patient in some circumstances [11]. In these cases, it may be preferable to share the medical facts with family members as opposed to the patients themselves. This model promotes shared fam-

ily decision making as opposed to individual decision making. Some cultures believe that if a patient is given too much negative information regarding a diagnosis, particularly in the case of a terminal diagnosis, it may make it more difficult for the patient to combat the condition and increase the risk of dying from the disease [12]. In the case of cultural differences, it is important that the physician learn the cultural values of the patient as well as the patient’s family, especially with respect to how much information should be disclosed. Most ethicists suggest talking to the patient directly first and asking her how much information she would like to know. It is imperative to not assume that every cultural norm applies to every individual, and some of these patients may still prefer a model of individual decision making [13]. It can be possible, and even preferable, to determine what degree of detail the patient would like to have shared with her, without actually transferring that knowledge. When invoking therapeutic privilege is ethically inappropriate, there are several techniques that a physician may use to make communication easier and allow for full disclosure without alienating or upsetting the patient. Palmieri and Stern suggest creating an open dialogue in which physicians admit to patients that it is a natural tendency to want to be reluctant to share information that may be painful [4]. This, in turn, may make it easier for patients to be truthful and disclose information about themselves that may be embarrassing or present them in a negative light. It is ethically acceptable to admit to a patient when there is something to communicate with her that a physician is struggling with, as it dually shows the humanity of the physician and acknowledges the difficulty of the situation. Furthermore, it is ethically permissible to admit to knowing that many things in medicine are unknown, and there are limited or no data about some interventions, particularly in the specialty of dermatology. If it is not a particular area of expertise for the provider, it may be helpful to point the patient in the direction of a subspecialist or a specialty group that may have further reliable information.

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 ying on Behalf of Patients to Third L Parties: Ethical and Moral Issues

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While therapeutic privilege entails lying to or withholding information directly from patients for their betterment, physicians may also consider lying indirectly on behalf of their patients to insurers or other third parties. Lying for patients may be considered by some physicians with the intent of trying to help the patient receive the desired medical treatment and, for example, could involve fabricating the severity of the disease for payor approval purposes. As insurers place increased restrictions on patient qualifications for medications or procedures, physicians are faced with the dilemma of how to get patients the care that they consider to be optimal if the insurer disagrees with this assessment [14]. Step therapy, which requires patients to first fail a less costly treatment before they may have access to the treatment the physician suggested, is increasingly employed by public and private payors [15]. These may require physicians to use medical options that are less efficacious or have been shown to have more side effects before the patient is a candidate for a more expensive, but more appropriate, treatment option. Surveyed physicians have been shown to sanction the use of deception, particularly in cases where such deception is critical to receive life-sustaining therapy [16]. A study of 169 internists evaluated physician willingness to participate in deceptive behavior in the setting of six clinical vignettes. In this study, 56.2% of physicians were willing to attest that a patient had new pregangrenous skin changes in order to get the patient’s insurance to cover arterial bypass grafting. In this case, the hypothetical patient reported that the skin changes were there before her current insurance coverage, but the physician would choose to act deceptively in order for it to not be considered a pre-existing condition. Conversely, only 2.5% of physicians were willing to assist a patient who desired cosmetic rhinoplasty due to feelings of poor self-esteem by documenting a “deviated septum” on physical examination [16]. It seems

as though clinical context plays an important role in whether or not a clinician is willing to engage in deceptive behavior. In dermatology, physicians are presented opportunities to participate in behavior deceptive to insurance companies on a daily basis. In some cases, it may be diagnosis-­related deception. For instance, prescribing tretinoin for a patient who desires it for cosmetic enhancement purposes and giving her a diagnosis of “acne vulgaris” if there is even one comedone on her face. Another example is patient pressure; a patient may try to cajole the physician into calling a seborrheic keratosis “irritated” to obtain treatment with liquid nitrogen if treatment will only be paid by the insurer if the lesion is symptomatic. Setting aside the fact that this activity may be fraudulent, there have been several ethical arguments for and against such behaviors. Some ethicists argue that “gaming the system”, in which a physician lies to a third-party payor for the sake of the patient, is ethically acceptable in the scenario of an unjust environment. This would entail a circumstance in which limits are set that are not consistent with physicians’ perceptions of adequate medical treatment. One argument for deceit in this context includes the internal morality of medicine, the normative ethical framework by which all healthcare providers operate. This must be differentiated from the external morality framework that applies to all members of a moral community. In this argument, everyone who operates within the internal morality of medicine lives by the most important internal good of such, which is that the patient’s health is the most important outcome [17]. Using this argument, the moral harm of lying is vastly outweighed by the physician’s beneficence to their patient in order to get the patient the treatment required. Gaming the system may be ethically justified, some argue, if it is done for “altruistic Hippocratic reasons” [17]. Consequentialist arguments against gaming the system include that doing so may ultimately hurt both the patient and the

109 Lying in Patient Care: Ethical and Moral Issues

healthcare system as a whole. Since there are finite healthcare resources, misrepresentation may actually hurt the system and the individual patient [17]. When physicians falsify medical information, allowing patients to receive a treatment that they would not have otherwise had access to, physicians may be denying access to that treatment to another patient who needs it more. Furthermore, the more patients who receive medical treatments in this way, the more likely that payors may place even more restrictions on a treatment, thus making it more difficult overall for any patient to receive the treatment. This speaks to the importance of distributive justice when considering the utility of lying on behalf of patients. Deontological arguments include the inherent immorality of lying and again, concerns of distributive justice. Other arguments against lying on behalf of patients include one based on teleological ethics; teleological ethics posits that what is good or just about an action is related to its endpoint (ie, “the ends justify the means”). Using teleological ethics, Sade argues that constant lying, even if it is done with benefi-

cent intentions, over time undermines moral perceptions of physicians, eventually “habituating the physician to deceit in a broader range of circumstances” [18]. In this argument, cognitive dissonance sets in and allows physicians to disengage from the moral questionability of lying and may more readily lie in other parts of practice. There are also arguments that lying on behalf of patients sometimes benefits the physician as much as it benefits the patient. Sometimes misrepresentation could end up decreasing the physician’s workload or increasing the physician’s compensation. While the physician may stand to benefit equally as the patient does in the beginning, over time a physician’s behavior may change and become more open to deception secondary to self-interest. If a dermatologist biopsies a banal appearing nevus at the patient’s request and sends it to pathology with “concerns for atypia”, the dermatologist may benefit from a financial standpoint, just like the patient benefits from its removal from an autonomy standpoint. The reason for the deception needs to be considered in each and every case scenario.

Case Scenarios

Case 1 You are evaluating a new patient who presents to you with delusions of parasitosis. The patient states she has seen multiple dermatologists before, none of whom have been able to help her. She complains of generalized pruritus of and formication. On examination, only excoriations are seen; previously obtained bloodwork and punch biopsy results were non-contributory. She demands that you prescribe her an antiparasitic medication so she can “get rid of the fleas.” Case 2 A 33-year-old woman is seen in follow up for plaque psoriasis. The patient has a longstand-

ing history of plaques on her arms and legs, which have been minimally responsive to topical treatment. The total body surface area affected is 2%. She is interested in pursuing systemic treatment for her psoriasis for cosmetic reasons. She is not interested in oral therapies like methotrexate due to concerns surrounding side effects, and wants you to prescribe her an anti-IL-17 or IL-23 class biologic which would help clear the psoriasis with fewer risks. You state that technically, she would not be a candidate for those due to the fact that she has only mild psoriasis. She then asks you to document that the psoriasis is more extensive and symptomatic than it is, with the intent of qualifying for a biologic agent.

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Case Discussions

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Case 1 is an ethical dilemma that dermatologists encounter on a regular basis. The challenge lies in the fact that the patient has a delusion; that is, a false fixed belief that cannot be changed by the provider [18]. Even in cases of a strong physician-patient relationship, the chances of persuading a patient with delusional infestation that the patient does not, in fact, have any sort of infestation are slim to none. Unfortunately, complying with the patient’s request for antiparasitic treatment will provide no clinical benefit to her and her delusion will remain fixed. If the patient is told by the dermatologist to seek psychiatric help without providing other medical assistance, the patient may feel stigmatized and reluctant to pursue follow-up treatment. Some dermatologists invoke therapeutic privilege in this scenario and have professional precedent to do so. The American Medical Association Code of Ethics states that physicians “may withhold information about a patient’s diagnosis or treatment when disclosing it would pose a serious psychological threat, so serious a threat as to be medically contraindicated” [19]. Withholding the diagnosis and related information from the patient just so she does not refuse treatment would violate the Code of Ethics; however, if the clinician feels like disclosing more information to the patient may cause her great psychological harm, there may be a stronger justification for applying therapeutic privilege. Again, withholding information should only be done when certain criteria are met; if the patient cannot make an informed decision due to a lack of insight, if harm would come to the patient if antipsychotics are not prescribed, if the patient would not take the antipsychotic if recommended, and typical means of compelling a patient to treatment (ie, medical hold or involuntary commitment) are unavailable or inappropriate [20]. The deception must then be revealed when the patient’s insight has improved, and the details of the diagnosis, the medication used, and the rationale for the treatment chosen all have to be discussed. At that point, the patient may be

competent to make an informed decision to refuse continued medical treatment. Some clinicians will use the term benevolent deception to describe methods of convincing patients with delusional infestations to take antipsychotic medication by telling them it will decrease the sensory threshold to “feeling” the bugs. This approach may lead down a slippery slope which violates the Code of Ethics since the primary reason for doing so is that the patient will not refuse the proposed treatment [21]. In Case 2, a dermatologist is pressured by the patient to lie on her behalf. She would like the doctor to falsify medical records to result in the patient being a candidate for biologic therapy that she would not otherwise be due to the mild nature of her psoriasis. In this case, the physician must consider the reason the patient is requesting these falsifications, and ultimately how the patient would benefit in this situation. The patient has a valid point: insurers often require psoriasis patients to fail drugs that are not as efficacious or pose more health risks to them than newer (more expensive) treatments. However, the patient is not requesting the treatment to alleviate her symptoms, but solely for cosmetic reasons, which may have a mild impact on quality of life. This does not justify the use of gaming the system on the patient’s behalf. Even though biologics are the most effective class of medications to treat psoriasis, so far they are indicated for moderate to severe psoriasis only. In addition, there are several other reasonable treatment options the patient could first try. It is ethically appropriate to explore with the patient why she wouldn’t want to be on medications mandated by step therapy, ie, the patient may not want to be on methotrexate for her psoriasis due to the fact that she is of child-bearing age and considering having a child sometime in the future. In this scenario, if the physician and patient can determine a significant justification to bypass methotrexate or phototherapy, then treatment with biologics may be warranted.

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Conclusion Lying to patients, while not ethically appropriate on a regular basis, may have applications in select scenarios when patients may benefit from the falsehood. The use of therapeutic privilege must be considered carefully with the reason for lying or withholding information having an anticipated benefit to the patient that would not be possible without it. These benefits may include valuing the patient’s cultural background, preventing physiologic or psychological harm, or helping a patient achieve personal moral ends. Lying on behalf of patients to third parties, such as other physicians, family members, or payor systems, also may be ethically considerable in very narrow, specific situations. In the case of lying to payor systems, some ethicists argue that there may be no other way for patients to receive treatments that their physicians deem most acceptable, and takes into consideration inherent flaws of the healthcare system. This determination varies depending on a consequentialist or deontological standpoint, and may be problematic from a distributive justice perspective.

References 1. American Medical Association. Principles of medical ethics. 2001. www.ama-assn.­org/ama/pub/category/2512.html. 2. Richard C, Lajeunesse Y, Lussier MT. Therapeutic privilege: between the ethics of lying and the practice of truth. J Med Ethics. 2010;36:353–7. 3. Will JF. A brief historical and theoretical perspective on autonomy and medical decision making: part II: the autonomy model. Chest. 2011;139(6): 1491–7. 4. Palmieri J, Stern TA. Lies in the doctor-­patient relationship. Prim Care Companion J Clin Psychiatry. 2009;11(4):163–8.

5. Fried RG, Perlis C.  Therapeutic privilege: if, how, and when to lie to patients. In: Bercovitch L, Perlis C, editors. Dermatoethics. New  York: Springer; 2012. p. 33–6. 6. Kant I.  Groundwork of the metaphysic of morals (translated by Paton HJ). San Francisco: Harper & Row; 1964. 7. Resnik DB.  The patient’s duty to adhere to prescribed treatment: an ethical analysis. J Med Philosph. 2005;30(2):167–88. 8. Johnston C, Holt G. The legal and ethical implications of therapeutic privilege- is it ever justified to withhold treatment information from a competent patient? Clin Ethics. 2006;1:146–51. 9. Brown C.  Kant and therapeutic privilege. J Med Philos. 2008;33:321–36. 10. Sokol DN.  Can deceiving patients be morally acceptable? BMJ. 2007;334(7601):984–6. 11. Zahedi F. The challenge of truth telling across cultures: a case study. J Med Ethics Hist Med. 2011;4:11. 12. Pentheny O’Kelly C, Urch C, Brown EA.  The impact of culture and religion on truth telling at the end of life. Nephrol Dial Transplant. 2011;26(12):3838–42. 13. Nie JB.  The fallacy and dangers of dichotomizing cultural differences: the truth about medical truth telling in China. Virtual Mentor. 2012;14(4):338–43. 14. Nayak RK, Pearson SD.  The ethics of ‘fail first’: guidelines and practical scenarios for step therapy coverage policies. Health Aff. 2014;33(10):1779–85. 15. Pharmacy Benefit Management Institute. 2013– 2014 prescription drug benefit cost and plan design report. Plano: PBMI; 2013. 16. Freeman VG, Rathire SS, Weinfurt KP, Schulman KA, Sulmasy D.  Lying for patients: physician deception of third-party payors. Arch Int Med. 1999;159(19):2263–70. 17. Tavaglione N, Hurst S. Why physicians ought to lie for their patients. Am J Bioeth. 2012;12(3):4–12. 18. Sade R.  Why physicians should not lie for their patients. Ann J Bioethic. 2012;12(3):17–9. 19. Fabbro SK, Aultman JM, Mostow EN.  Delusions of parasitosis: ethical and clinical considerations. JAAD. 2013;69(1):156–9. 20. Wynia M.  Invoking therapeutic privilege. Virtual Mentor. 2004;6(2):90–2. 21. Bartels J, Ryan C. How should physicians use their authority to name a stigmatizing diagnosis and respond to a patient’s experience? AMA J Ethics. 2018;20(12):E1119–24.

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Therapeutic Non-Adherence Stephanie K. Fabbro Contents  thical Arguments Relating to Therapeutic E Non-Adherence – 115  ommunication Techniques with Patients to C Enhance Adherence – 116 Moral Issues – 117 Legal Issues – 118 Summary – 121 References – 121

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nnLearning Objectives 1. To understand reasons for patient nonadherence and investigate potential ways of mitigating their effect on patient care. 2. To evaluate and compare ethical responsibilities of clinicians and moral responsibilities of patients to mitigate the risks of therapeutic nonadherence. 3. To learn the ethical and legal implications of non-adherence for the healthcare system at large.

>>Points of Emphasis

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55 Non-adherence may be either primary (patient never picked up prescription or scheduled recommended treatment) or secondary (treatment received by patient but not used or used inconsistently or incorrectly). This chapter focuses on secondary non-adherence. 55 Physicians have an ethical obligation of beneficence to take steps to determine the root causes of non-adherence and to modify treatment regimens accordingly. 55 Patients have a moral obligation to comply with treatment and to vocalize to their healthcare providers reasons for not doing so. Honesty and trust are the basis of any therapeutic relationship. 55 Neither obligation is absolute. Physicians may discharge non-compliant patients and patients do not have a moral obligation to follow treatment regimens they find incompatible with their religious beliefs, cultural norms that conflict with another greater moral duty, or that they deem either unduly risky or incompatible with their daily routines, or physical or economic limitations. There is a mutual moral obligation of honesty, however. 55 Communication is at the heart of therapeutic adherence. Clear instructions, written treatment plans, group teaching, “teach-­ back”, more frequent follow-up and written agreements may all foster better adherence.

Therapeutic non-adherence, a pervasive problem throughout medicine, is particularly pertinent to dermatologists. There are several reasons for this, including the physical diffi-

culty of topical application of medications, the diverse patient populations treated by dermatologists, and the complicated regimens sometimes used to treat dermatologic conditions. Therapeutic non-adherence in all areas of medicine has a marked impact on patient outcomes and has been implicated in 125,000 patient deaths annually in the United States [2]. In dermatology, non-adherence may lead to unnecessary office visits and costly medication changes. Furthermore, it may be difficult to initiate a conversation with patients regarding non-adherence without being perceived as confrontational. In this chapter, we will discuss several techniques to discuss nonadherence with patients in a constructive fashion and provide ways for dermatologists to create treatment plans that patients may find easier to adhere to. We will also examine arguments regarding physicians’ ethical obligations to their patients as well as patients’ moral obligations to their physicians regarding therapeutic non-adherence. In dermatology, there are many reasons that patients may give for their non-adherent behavior. For example, while biologics have been hypothesized to be associated with better compliance than other systemic therapies due to ease of use and often dramatic efficacy, 29% of surveyed patients on biologics were intentionally non-adherent. This was particularly common if the patient had unresolved concerns or questions about the medication, or if the patient had particularly good disease control. Patients who have been free from disease for an extended period of time might elect to skip an injection [3]. In the case of topical medications, fear of side effects and misunderstanding the mechanisms of action are driving factors for non-­ adherence, with many parents and patients citing unfounded claims such as weight gain, skin aging, and growth delay as side effects that they associated with the use of topical steroids [3]. Higher levels of fear and anxiety, as reported by parents and patients, were directly correlated with a greater risk of non-­adherence [4]. Non-adherence and non-­persistence rates could be as high as 88% when treating actinic keratosis with topical field therapy, during which patients often are tempted to stop ther-

115 Therapeutic Non-Adherence

apy early depending on how much inflammation and skin pain they experience during treatment [5]. Patients who are using topical acne therapies have persistently lower rates of adherence than those on oral therapy; many patients incorrectly use topical acne drugs as spot treatments, when the medications function best as suppressive therapies to prevent new lesions [6, 7].

 thical Arguments Relating E to Therapeutic Non-Adherence The reasons for non-adherence vary greatly; primary non-adherence, defined as the patient never having picked up the prescription may be caused by logistical issues such as financial constraints or lack of transportation. In the case of secondary non-adherence, defined as when medication is received by the patient but not used correctly or consistently, the reasons could be anything from inadequate counseling and education, mistrust of the physician, fear of the medication or medication-related side effects, to personality-related issues and psychopathology. When non-adherence is admitted by the patient or suspected by the physician, the latter has an ethical duty to try to investigate the root cause for it and correct it out of an obligation of beneficence. For instance, if the patient is not using the topical treatment correctly, odds of clinical improvement decrease dramatically. >>Point of Emphasis Non-adherence may be either primary (patient never picked up prescription or scheduled recommended treatment) or secondary (treatment received by patient but not used or used inconsistently or incorrectly).

Some ethicists argue that once a patient has agreed to a treatment, this creates a moral duty to comply with that treatment. If for any reason they cannot adhere with the treatment, they have a duty to vocalize that to their treating physicians, a position endorsed by the American Medical Association. According to the AMA Code of Medical Ethics, patients have multiple responsibilities when receiving

care, including truthfulness, providing an accurate medical history, requesting clarification when they do not understand treatment, cooperating with agreed-upon treatments, and taking personal responsibility, when able, in order to prevent disease [8]. In his Kantian analysis, Resnik applies categorical imperatives, defined as unconditional moral laws applicable to all agents, to the patient-­physician relationship [9]. In doing this, he argues that patients have made a series of explicit and implicit promises to the physician by entering into the patient-physician relationship. These promises include being honest about their medical histories, asking and receiving information about their conditions, adhering to treatments and helping physicians create appropriate treatment regimens. There are some exceptions to this; it would be permissible for the patient to break these promises in order to fulfill a more important moral duty, or if keeping the promise is not practical [9]. An example would be a man who would only take his antihypertensive medication once every other day, so that he could have more money to cover his rent, which represents a greater moral duty to his family. Something more specific to dermatology might be a mother who repeatedly has to cancel her phototherapy appointments because she cannot get childcare coverage for those times. Even in cases in which patients are morally justified in their non-adherence, the reasons for this behavior should still be communicated with treating physicians. In some areas of medicine, a history of nonadherence is a major factor to consider when making therapeutic choices for that patient in the future. This creates a rationale for restricting patient choice due to issues of distributive justice. Consider patients who are candidates for organ transplants; non-­adherence to a potential treatment regimen could cause graft rejection, and given the scarcity of the resource (transplantable organs), the resource may be better allocated to someone else. Patients with communicable diseases like tuberculosis could be forced into adherence through Directly Observed Therapy (DOT), in which patients either must present at a given location daily for treatment or it is given by a supervising agent in the home. These cases may violate patient autonomy to

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some extent, but from a utilitarian perspective they are necessary for the greater good of the community and are therefore are generally considered ethically permissible. Some have argued that too much emphasis is placed on “fixing” non-adherent patients, focusing on interventions that will help educate them and modify their behaviors, without fully considering their autonomy. While evidence-­based medicine is increasingly becoming the standard in determining treatment plans, algorithmic care, by its very nature, disregards individual preferences and values. Bernadini argues that the design of these studies and treatment plans implies that the “physician is the only one skilled enough to make the right decision and that patient default is irrational.” [10] Conversely, patients who are medically knowledgeable and decide against a treatment plan based on their perceptions that the risks do not justify the benefits of treatment are not often acknowledged in the discussion of non-adherence [10]. >>Point of Emphasis

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55 Patients have a moral obligation to comply with treatment and to vocalize to their healthcare providers reasons for not doing so.

However, patients do not have a moral obligation to follow treatment regimens they find incompatible with their religious beliefs, cultural norms, which conflict with another greater moral duty, or which they deem either unduly risky or incompatible with their daily routines, or physical or economic limitations.

Communication Techniques with Patients to Enhance Adherence When communicating with patients regarding lapses in adherence, often a direct conversation with the patient can be the best way to pinpoint the obstacle to treatment and mitigate it. It is important to ask open-ended questions about their treatments, inquiring about any unexpected incurred costs or convenience preferences, and ensuring the regimen is not overly complex for the patient. The “teach-back”

method, in which patients repeat back to their physicians their understanding of the appropriate use of their medications, has been shown to significantly improve self-­care and decrease hospital readmission rates in some studies [11]. Providing written instruction sheets may also be particularly helpful in the settings of postsurgical care as well as for over-the-counter recommendations. Telephone contact information and electronic patient portals may be provided for questions or follow-up. Adjusting follow-up intervals may be beneficial in certain conditions as well. Feldman claims that a useful strategy to help the patient gain trust in the efficacy of a topical treatment regimen is to have patients use their treatment twice daily as usual and follow up in the office 3 days later as opposed to typical follow-up, which may be several weeks later. This helps the patient understand how the medication works, helps create a sense of buy-in and may help foster long-term compliance [12]. If non-adherence to the initial treatment plan persists despite efforts at education, the physician should directly address any potential roadblocks to adherence, and ask what the patient thinks may make their treatment regimen easier to follow. Changing the vehicle, reducing dosing frequency, using a combination product or switching from a steroid to a non-steroidal product could all enhance adherence. Financial constraints, unstable housing and transportation concerns can all make it difficult for patients to attend medical visits or get medication from the pharmacy. Given this, it is important that dermatologists ask questions regarding external factors to better understand reasons for noncompliance and allow the patient to feel validated [13]. If necessary, external factors may be a reason to change therapy altogether, if it would lead to better adherence; for instance, patients who are unable to consistently inject their biologic medication every 2 weeks as prescribed due to frequent travel are likely to be more compliant using a biologic that requires less frequent injection. One of the most well-studied techniques for mitigating non-adherence is the written agreement, which makes patients aware of the conse-

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quences of non-adherence and may help them assume a more active role in their own health care. This has been shown to be an effective technique in specialties such as pain management, but the same principles can be applied to dermatology; both parties can freely enter or leave the agreement, and both parties assume the responsibilities they agree to in the written contract [9]. Some argue against the use of these, saying that the ability to terminate the relationship at any time undermines the accountability necessary to make the agreement work [14]. Patients may feel that they are not being trusted if the contract implies or states that their relationship with their caregiver could be terminated at any point due to so-called “bad behavior”, particularly if a unilateral approach is taken. In order for these to work, goals should be tailored specifically to each patient. It is also important to emphasize that the objective of the contract is to enhance the therapeutic process and help the patient meet health goals, not to make the patient feel scrutinized or pressured. Some countries promote a system of incentivization of patients to improve adherence to healthy behaviors. Germany, as an example, places a co-responsibility on insured citizens for behaviors including having health-conscious lifestyle, attending scheduled appointments, and taking an active role in treatment. The bonuses provided for participation in health programs include cash, reductions in co-pays or insurance contributions, and physical healthcare goods and materials [15]. This created several ethical tensions in the German healthcare system, which has over 200 competing sickness funds from which citizens can choose. Additionally, the more attractive an incentive program a sickness fund has, the more likely it is to attract high-­ income earners who have been shown to be more likely than the poor to participate in such programs [15]. This is beneficial to the sickness fund itself since the amount of money it receives is based on the patient’s annual income. Doctors were also mandated by the government to report their patients’ level of compliance with treatments in order to receive the bonus, which created tension for physicians who felt uncomfortable having to report such behaviors to the government. In the United States, monetary in-

centive programs have been adopted by certain states with variable efficacy rates. The design of such incentive programs, if these are going to be implemented on a larger scale, needs to be carefully considered and executed in such a way that it would not alienate patients who did not want to participate in such a program, or further deter them from making improvements to their healthcare-related behaviors. Many private insurance plans in the US have instituted similar incentives related to adoption of healthier lifestyles. Recent technologies will bring challenging new dilemmas to the area of non-compliance. Nanodrugs, which work via a digital health feedback system, have been designed and added to medications. When ingested, they send feedback to a patch on the patient’s body that logs the time the medication was taken to a smartphone app. This technology would theoretically help improve adherence, and if not, allow the physician a constructive way of discussing with the patient what modifiable day-to-day factors might be potentially affecting their adherence. Risks associated with using such technologies include potentially violating patients’ privacy and making them feel spied upon and not trustworthy. These nanodrugs have currently been approved by the FDA for implementation in antipsychotics (aripiprazole in particular); in the future they may be implemented in other medications as well [16]. >>Point of Empasis Communication is at the heart of therapeutic adherence. Clear instructions, written treatment plans, group teaching, “teach-­ back”, more frequent follow-up and written agreements may all foster better adherence.

Moral Issues Do patients have a moral obligation to adhere to medical therapy? One can assign such a judgment that blame is appropriate if deserved or if it might lead to an improvement of the behavior of the individual (merit-based and consequentialist views, respectively). Buetow

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and Elwyn explore how people may potentially have several different responsibilities in their role as patients, including role, capacity, causal, and liability responsibilities. First there is role responsibility which is defined by social roles as consumers of care. Capacity responsibility is defined as an individual having free will and the capacity to make one’s own decisions. Causal responsibility is defined as a causal relationship between the patient and the error made. Finally, there is liability responsibility, which is defined as error in violation of the law. They argue that based on the patient’s role responsibility, patients are most likely to suffer from the errors that they themselves make, and so they have a responsibility to participate in error reduction to the best of their abilities. Based on capacity responsibility, which focuses on the person’s ability to understand and anticipate harm, and supports the competency that derives from their personhood, patients should be permitted to make decisions freely, even if their choices will result in error and potential harm to themselves. Regarding causal responsibility, causality influences what the patient is responsible for, and the causes for their non-compliance have a great role in the amount of blame that could be potentially assigned to them. As for liability responsibility, the authors describe consequences of patient errors; positive consequences entailing an ability to learn from ones’ mistakes and not repeat them, but negative consequences entailing adverse health reactions, and as the amount of harm increases, the amount of blame also increases. They theorize that allowing the patient to carry some of these responsibilities allows them to be accountable for the errors they make (applied here to non-adherent behavior) and potentially change their actions [17]. In fact, Evans proposed a set of moral duties that patients have, as a result of them actively seeking publicly-funded medical care, including the duty to uphold their own health and the health of others, the duty to seek and access healthcare responsibly, duties of truthfulness and compliance, duties of recovery or maintenance, and even a duty of research participation [18]. There are several objections against hold-

ing patients to these duties. There are societal grounds on which patients cannot influence external factors that affect their non-adherent behavior, and that some non-­adherence reflects cultural norms which must be respected. As an example, a patient who is culturally (or religiously) opposed to taking a capsule that has an animal-derived gelatin coating may refuse to take it if this value was not specifically discussed at the office visit. There are also epistemological objections including arguments that medical knowledge is indeed fallible, and there is no duty to comply with a potentially dangerous treatment [18]. Patients may argue that medications that are used today may be found to have unknown long-term risks in the future, or that treatments that were once thought to be beneficial eventually turned out to cause more harm than good. “Today’s fact may be tomorrow’s error.” [19]

Legal Issues The legal literature refers to patients demonstrating either unintentional or intentional resistance to medical advice. Unintentional resistance refers to the situation in which a patient is not following medical directions unbeknownst to the provider and simply fails to follow through. Unintentional resistance may result from forgetfulness or an overly complex medical regimen. Intentional resistance, on the other hand, arises when the patient is aware of their lack of compliance and sometimes even vocalizes this directly to the clinician. In the case of intentional resistance, the patient has made an active decision against treatment after weighing the risks and benefits [20]. Unintentional resistance likely represents the majority of cases of patient noncompliance. A risk management approach would entail using techniques such as monitoring the patient by following up with consults, communicating with the patient to ensure there are no misunderstandings in the treatment regimen, and if all else fails, having a frank conversation with the patient about the consequences of their behaviors [21]. If the patient were to suffer medical harm as a

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direct result of noncompliance, a physician may still be found to be negligent if the physician did not ensure that the patient received appropriate follow-up care. Continued active resistance to medical treatment may warrant ending the physician-­ patient relationship. The law allows physicians to choose their patients, just as other buyers and sellers in the marketplace. Outside of the setting of discrimination, the law does not mandate that a physician must treat any patient, non-adherent or otherwise. Physicians are, however, required to provide written statement of termination of services and provide emergency care for a set period of time [22]. If the physician does not provide an adequate period of time for the patient to find another provider, or fails to facilitate transfer of care, or terminates with inappropriate or unreasonable notice, the physician may be found liable for abandonment [23]. Termination should be done mindfully as discontinuation of services can lead to patient disenfranchisement with the healthcare system and may cause them to feel stigmatized. Ideally, ending the physicianpatient relationship should take place only after an attempt to understand the patient’s

therapeutic difficulties and optimize the treatment regimen has occurred. There are currently no laws that forbid physicians from refusing to treat noncompliant patients. There are several arguments supporting physicians who wish to terminate non-adherent patients; This is particularly relevant as physicians are more and more incentivized by valuebased care. If a physician experiences a decrease in compensation due to poor outcomes from non-compliant patients, this could be a justification for physicians to stop treating such patients. Physicians who refuse to see certain noncompliant patients are validated by physicians’ autonomy as well as association rights, and the actual act of firing a patient may motivate that individual to improve compliance or to find a physician better suited to treat the patient [24]. >>Point of Emphasis There are currently no laws that forbid physicians from refusing to treat noncompliant patients. However, there are laws and codified ethical principles that govern how patients may be discharged. Failure to follow these may lead to medicolegal liability or disciplinary sanctions.

Case Scenarios

Case 1 A 22-year-old man receiving isotretinoin for severe acne presents to his three-month follow-up appointment. You have prescribed two 30  mg capsules daily. As part of your history taking, you ask how many capsules the patient has left; he states he is not sure but that but he has several blister packs left, each with ten capsules. He states the acne is improving and he is satisfied with the therapy. On exam, he has improving acne, a lack of cheilitis and xerosis; on chart review, he missed his last appointment with you. Lab studies reviewed from his prior appointment (2 months ago) are normal, but he has not obtained new lab tests for this visit as previously directed. Case 2 An 86-year-old man presents for surgical excision of a squamous cell carcinoma on the arm

that was diagnosed by shave biopsy over a year ago. On examination, the lesion has tripled in size since the original biopsy was performed and now measures 4.0  cm in diameter. When asked why the patient cancelled his original planned excision, he states that it looked like to him that you had “gotten it all” and the lesion had healed. Further, he admits that he no longer has a driver’s license and depends on his son to get him to medical appointments. Case 3 A 4-year-old child with severe atopic dermatitis presents for follow-up. The patient has a history of repeated episodes of secondary impetiginization and eczema herpeticum; today on examination, there are several lichenified and crusted plaques involvng over 20% of the body surface area. On discussion with the patient’s

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mother, she explains that she shares custody with the child’s father, and she tries to adhere to ­topical therapy the best she can; however, when the child is at her father’s house the child always returns with a flare-up. Current therapies

include topical fluocinolone acetonide scalp oil, triamcinolone 0.1% cream for flares on the body, aclometasone 0.05% cream for maintenance on the body, and tacrolimus 0.03% ointment for the face and genitals.

Case Discussions

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In Case 1, non-adherence to isotretinoin, a medication which requires careful monitoring through regular office visits, bloodwork, and risk evaluation and mitigation strategies through iPLEDGE, is identified. A recent retrospective study showed that only 78.6% of patients who started isotretinoin ended up completing the prescribed course, exluding those who discontinued isotretinoin for medical reasons. More male patients were lost to follow-up than female patients in this study [25]. Although, logistically, it is easier to restart isotretinoin for a male patient than for a female patient due to iPLEDGE, it is still important that these patients be monitored carefully for developing side effects, especially in the first few months of therapy. Some prescribers have suggested that for male and female patients of non-childbearing potential, monthly visits may not be necessary and may cause an undue burden to patients and the healthcare system, proposing other means of contacting the patient to verify that they are using their medication as directed [26]. In this case, the patient is not complying with the original agreement made between the patient and the physician via iPLEDGE to remain in contact with the dermatologist every 30  days. While there are no specific recommendations that iPLEDGE puts forth in communicating with noncompliant patients, it is important to explore the reasons why this patient is nonadherent to the treatment plan [27]. If a monthly office visit is not feasible, teledermatology may be an acceptable way to monitor the patient and ensure he is using his medication correctly. It is important to also emphasize that if he is not taking his capsules as directed and has remaining medication at the end of the originally proposed therapeutic course, he will either need to dispose of the medication or continue on it for a longer

duration than initially expected. Ultimately, if patients cannot comply with the rigorous demands of iPLEDGE despite counseling and optimization of all external factors, it may be appropriate for the dermatologist to either discontinue isotretinoin therapy or work with the patient to find a mutually acceptable way to use the medication safely and efficaceously. In Case 2, surgical noncompliance is explored as a variation of non-adherence commonly seen in dermatology. Elderly patients, the most common population to be diagnosed with skin cancers, may face many challenges in keeping follow-up appointments including transportation issues or misunderstanding diagnoses. At the time of biopsy, it may not always be clearly explained that follow-up care may be required; this is especially important to emphasize in lesions that may potentially bec invasive. The clinician should make every effort to educate the patient on treatment options at the time the diagnosis is made or confirmed in order to improve patient understanding and awareness. During the time that the patient was lost to follow-up, the physician continued to have an obligation to inform him of the diagnosis and attempt to arrange definitive treatment. Many physicians will send a certified letter after unsuccessful several attempts have been made to reach the patient over the telephone, and if necessary, contact a family member to assist with reaching the patient and discreetly determine whether the patient has the capacity to make medical decisions or needs help with transportation. In Case 3, an all-too-common and difficult scenario involving multiple caregivers for a child is presented. Atopic dermatitis is a disease state in which many reasons for noncompliance are often cited by parents, including treatment plans

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that are too time-­consuming, costly or complicated, concern about side effects, and lack of understanding regarding the disease process [28]. Furthermore, misconceptions regarding treatment are prevalent and contribute to up to 30–40% of medications prescribed to treat atopic dermatitis not being used as directed [29]. Several interventional methods have been found to be effective at increasing compliance rates in atopic dermatitis including written disease plans, increased frequency of office visits, frequent reminders using e-mail and text messages, and group educational sessions on eczema care [30]. Longer educational sessions, which could be provided by ancillary dermatology staff or by national or state-­based eczema patient support groups, seem to be more helpful. In this particular case, simplifying the treatment regimen by using fewer topical medications, as well as using a written treatment plan

Summary Reasons for therapeutic non-adherence vary widely; while some reasons are within a physician’s control and are modifiable, others are unpredictable and difficult to anticipate. Patients have a moral duty to attempt to adhere to treatment or notify their physicians if this is not possible, and physicians have a duty to optimize adherence. Communication techniques may enhance adherence, including addressing patient concerns on logistics of medication use, fears surrounding medications, and improved understanding of the disease states. Incentivization programs may also improve adherence without violating patient autonomy. If patients are unable to remain adherent, despite physicians’ best efforts, doctors may ethically choose not to treat such patients.

References 1. Sabaté E, ed. Adherence to long-term therapies: evidence for action. Geneva, Switzerland: World Health Organization; 2003. Available at https://www.­who.­ int/chp/knowledge/publications/adherence_report/ en/. Accessed 24 May 2020.

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that could be provided to the father (along with separate supplies of medication), could be one way of mitigating this patient’s risk for continued flare-ups and repeated infections. A simple check-in via telephone call or message on the electronic health record a few days after the appointment has been shown to allow parents to have time to consider potential questions that had not been addressed at the office visit. This helps to promote a sense of trust and a stronger physician-patient relationship, which has been shown to be one of the best predictors of therapeutic adherence [31]. If the parent who is less apt to adhere with the treatment regimen continues to not do so despite the physician’s best efforts, and the patient suffers ongoing harm from this, it may be considered medical neglect and appropriate measures, including modification of the custody arrangements might be necessary.

2. Viswanathan M, Golin CE, Jones CD, et  al. Interventions to improve adherence to self-­ administered medications for chronic diseases in the United States: a systematic review. Ann Intern Med. 2012;157:785–95. 3. Thorneloe RJ, Griffiths CEM, Emsley R, Ashcroft D, Cordingley L.  Intentional and unintentional medication non-adherence in psoriasis: the role of patients’ medication beliefs and habit strength. J Invest Dermatol. 2018;138:785–94. 4. Song SY, Jung SY, Kim EY.  Steroid phobia amid general users of topical steroids: a cross-­sectional nationwide survey. J Dermatol Treat. 2018;30:245– 50. 5. Mueller SM, Itin P, Vogt DR, et al. Assessment of “corticophobia” as an indicator of non-adherence to topical corticosteroids: a pilot study. J Dermatol Treat. 2017;28:104–11. 6. Stockfleth E, Peris K, Basset-Seguin N, et  al. Adherence to topical therapies in treatment of actinic keratosis: a literature review. J Dermatol Treat. 2016;26:538–45. 7. Zaghloul SS, Cunliffe WJ, Goodfield MJD. Objective assessment of compliance with treatments of acne. Br J Dermatol. 2005;152:1015–21. 8. Chen DM, Feldman SR.  How patients experience and manage dryness and irritation from acne treatment. J Drugs Dermatol. 2011;10:605–8. 9. Arekapudi S. A responsible patient. Virtual Mentor. 2003;5:112–3. 10. Resnik DB.  The patient’s duty to adhere to prescribed treatment: an ethical analysis. J Med Philosph. 2005;30(2):167–88.

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11. Ha Dinh TT, Bonner A, Clark R, Ramsbotham J, Hines S. The effectiveness of the teach-back method on adherence and self-­management in health education for people with chronic disease: a systematic review. JBI Database System Rev Implement Rep. 2016;14(1):210–47. 11. Bernadini J. Ethical issues of compliance/adherence in the treatment of hypertension. Adv Chronic Kidney Dis. 2004;11:222–7. 12. Medscape. Improving adherence improving outcomes: an expert interview with Steven R.  Feldman, MD, PhD. [Online] Available at: https://www.­medscape.­ org/viewarticle/588417. Accessed 17 Apr 2019. 13. Mantel J. Refusing to treat noncompliant patients is bad medicine. Cardozo L Rev. 2017;39:127–97. 14. Volk ML, Lieber SR, Kim SY, Ubel PA, Schneider CE.  Patient contracts in clinical practice. Lancet. 2013;379(9810):7–9. 15. Schmidt H, Gerber A, Stock S. What can we learn from German health incentive schemes? BMJ. 2009; 339:b3504. 16. George CE. Should a psychiatrist prescribe a nanodrug to help parents monitor a teen’s adherence? AMA J Ethics. 2019;21:E317–23. 17. Buetow S, Elwyn B. Are patients morally responsible for their errors? J Med Ethics. 2006;32:260–2. 18. Evans HM. Do patients have duties? J Med Ethics. 2007;33:689–94. 19. Smith S. Postmodernity and a hypertensive patient: rescuing value from nihilism. J Med Ethics. 1998;24:25–31. 20. Hugtenburg JG, Timmers L, Elders PJM, Vervlet M, van Dijk L. Definitions, variants, and causes of nonadherence with medication: a challenge for tailored interventions. Patient Prefer Adherence. 2013;7: 675–82. 21. Passinueau T. Patient fails to follow physicians repeated recommendations, resulting in myocardial infarction. [Online]. Available at: https://www.­medpro.­com/docu-

ments/10502/2735124/Risk+Management+Review_ 05-2019_MedPro+Group.­pdf. Accessed 17 Apr 2019. 22. American Medical Association. Opinion 1.1.5 Terminating a patient-physician relationship. Code of Medical Ethics. https://www.­ama-assn.­org/delivering-care/ ethics/terminating-patient-physician-relationship. Published 2017. Accessed 9 Jun 2019. 23. Byrd v WCW, 868 SW2d 767 (Tex 1994). 24. Laba TL, Lehnbom E, Brien JA, Jan S. Understanding if, how and why non-adherent decisions are made in an Australian community sample: a key to sustaining medication adherence in chronic disease? Res Soc Adm Pharm. 2015;11:154–62. 25. Kazemi T, Sachsman SM, Wilhalme HM, Goh C. Isotretinoin therapy: a retrospective cohort analysis of completion rates and factors associated with nonadherence. JAAD. 2018;73:571–3. 26. Kelsey A, Finch J, Grant-Kels JM. I pledge to prescribe ethically. JAAD. 2018;78:821–2. 27. About iPLEDGE.  Available at: https://www.­ ipledgeprogram.­com/AboutiPLEDGE.­aspx. 28. Patel N, Feldman SR. Adherence in atopic dermatitis. In: Fortson EA, et al., editors. Management of atopic dermatitis  – methods and challenges. New York: Springer; 2017. p. 139–59. 29. Krejci-Manwaring J, Tusa MG, Carroll C, et  al. Stealth monitoring of adherence to topical medication: adherence is very poor in children with atopic dermatitis. J Am Acad Dermatol. 2007;56:211–6. 30. Bass AM, Anderson KL, Feldman SR. Interventions to increase treatment adherence in pediatric atopic dermatitis: a systematic review. J Clin Med. 2015;4: 231–42. 31. Kojima R, Fujiwara T, Matsuda A, et al. Factors associated with steroid phobia in caregivers of children with atopic dermatitis. Pediatr Dermatol. 2013;30:29–35.

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Self-Destructive Patients and Unreasonable Care Requests Ethical, Moral, and Legal Issues Stephanie K. Fabbro and Lionel Bercovitch Contents Ethical Arguments – 124 Moral Issues – 126 Legal Issues – 126 Summary – 129 References – 129

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_13

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nnLearning Objectives 1. To discuss ethical and moral concepts of shared decision making in light of unreasonable care requests from patients. 2. To learn communication techniques in discussing medical decision ­ ­ making and ­compromises with patients.

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Patients have more access to medical information than ever before in history, and medicine has moved away from a paternalistic frame of reference. The Internet provides tremendous access to medical information; though some of these sources are credible, there are many that are unreliable, and patients may find themselves trying to navigate a “data smog” of medical data, jargon, unfounded claims, and anecdotal evidence [1]. Based on the National Cancer Institute’s Health Information National Trends Survey, it appears that patients’ trust and confidence in physicians actually increased as health information online proliferated [2]. Patients may choose to identify their own medical data first and then present it to their physicians as interpreters and mediators of this data, synthesizing it and helping patients come to the best conclusions. This combination of increased patient knowledge with decreased paternalism may make shared decision making more complicated than it had once been. While patients should be involved in the medical decision making process, autonomy is not an absolute value, especially in light of other ethical principles. As important as patient autonomy is to decision making, when it starts to outweigh nonmaleficence by encouraging the physician to do something not medically appropriate for the patient, autonomy may need to be limited. A system of absolute patient autonomy would be rife with opportunities for unnecessary risk and undue harm to patients. When a patient makes a care request that is not consistent with their diagnosis or disease severity, it is ethically imperative that physicians address and challenge the decision. The chapter will describe methods for physicians to respect autonomy while communicating with patients seeking unnecessary care.

>>Points of Emphasis 55 Patient autonomy or involvement in the medical decision making process is important. 55 However, when patient autonomy starts to outweigh nonmaleficence by encouraging the physician to do something not medically appropriate for the patient, autonomy may need to be limited:

Ethical Arguments Shared decision making developed traction in the Western world starting in the 1970s and onwards; patients began to request increased information regarding their medical conditions as well as better communication between doctor and patient [3]. In shared decision making, the emphasis is on both the patient and the physician actively participating in medical choices. Physicians educate patients to make decisions in their best interests. This provides a strong contrast to paternalism, in which the physician decides on the best plan of action based on the physician’s medical and personal knowledge of the patient; this course negates aspects of the patient’s autonomy and rationality. A patient may still exercise autonomy by asking the physician to behave in a paternalistic way on his or her behalf. There is no absolute moral right to access any medical intervention the patient desires [4]. If the physician thinks the medical treatment that the patient desires would provide no benefit to him or her, or be potentially harmful, the physician has no responsibility to provide it. Furthermore, by providing medical care that is not medically necessary, physicians may expose themselves to medicolegal liability, and violate professional oaths and norms, putting the physician’s reputation at risk. As the American Medical Association states, “physicians are not obligated to deliver care that in their best professional judgment will not have a reasonable chance of benefitting their patients. Patients should not be given treatments simply because they demand them” [5]. A position of absolute patient autonomy violates the best interest standard and contradicts the concept of shared decision making.

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Even bioethicists that argue autonomy is so important that patients should be allowed to make their own decisions in almost all circumstances, will often agree that “autonomy can be restricted if there is a threat of very severe harm to patients’ wellbeing” [6]. Medically unnecessary treatments may also challenge the ethical principle of distributive justice; treatments, as well as funds for those treatments, are finite resources. As physicians, it is ethically imperative to be mindful of how prescribed therapies impact the healthcare system as a whole. While a physician must first be an advocate for the best care for his or her patient, it also important to be a “prudent steward of social resources for which he is entrusted” [7]. Biologics for psoriasis, eczema and other dermatologic diseases can have wholesale acquisition costs of over $100,000 a year [8]. Excessive prescribing of such medications can, in turn, increase annual insurance premiums, co-pays and deductibles, create new changes to step edits, and raise healthcare costs to all participants. Due to this, patients can voice treatment preferences, but do not have a “moral right to commandeer limited social resources” [7]. The pressures to give into patient demands can be high as patient satisfaction models dominate compensation structures, and online patient reviews can dictate a physician’s local reputation. As part of the Affordable Care Act, the Centers for Medicare and Medicaid Services tied 30% of reimbursement for hospital services to the Hospital Consumer Assessment of Healthcare Providers and Systems survey [9]. Practice data from UK Databases suggested that antibiotic prescribing volume was a significant positive predictor of doctor satisfaction scores, and was the strongest predictor out of 13 variables [10]. Physicians may fear adverse outcomes for their patients if the active treatment suggested by the patient is not granted; for instance, physicians are far more likely to prescribe an antibiotic for a wound with minimal erythema if the patient requests it, even if it doesn’t currently look infected, in fear that the lesion may worsen over the subsequent day or two.

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Communication techniques when dealing with unreasonable care requests vary from blunt to nuanced and the technique best used likely depends on the particular situation. In some cases, a firm “no” may be valued, followed by an explanation as to why that treatment may not be an appropriate option for that patient. Offering alternatives based on what would be medically sound and effective is also useful. With other patients, it may be helpful to explore why a patient wants a particular treatment. Perhaps the patient is still not convinced that the seborrheic keratosis the dermatologist just diagnosed is not a melanoma, like one experienced by a close family member. One example provided by the television show House featured an elderly male who requested a syphilis test, for which he had no relevant symptoms to do so; on further questioning, it was determined that the patient had a new sexual partner and was concerned that he had a sexually-transmitted illness [11]. If no underlying cause is discovered that warrants a medical treatment, it still can be helpful to discuss with the patient who made a particular request. Doing so may focus on topic-specific education and improved understanding. If this is not addressed appropriately, the patient may feel like the doctor is not listening to what he or she has to say, or that the doctor is trying to ration care [11]. One study examined patients requesting risk-reducing mastectomy as a model for shared decision making prompted by patient requests [12]. Risk-reducing mastectomy is a technique in which healthy breast tissue is removed; this reduces the risk of breast cancer, but only reduces breast cancer mortality in those with a high probability of BRCA 1/2 mutations. Practitioners used various patient characteristics, such as whether they seemed “well-informed” or “rational”, as opposed to making their decisions based on emotional reasoning. Doctors then used these “well-­ informed” or “rational” characteristics to guide their own decisions on whether or not to perform prophylactic mastectomies. Study authors argue that this reflects provider mistrust of emotional decision making and rewards patients for logical reasoning. It is

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important to recognize that either emotional or more logical reasons may offer compelling support for care requests [13]. It is important to remain consistent with treatment decisions from visit to visit, and to display objectivity. In some circumstances, a physician may need to explain to the patient that the doctor’s role is to listen to the patient and offer an objective decision in terms of whether the requested service is medically indicated or not. If the patient is still not satisfied with the decision, it may be ethically acceptable and appropriate to encourage the patient to obtain another physician’s opinion. >>Points of Emphasis 55 The pressure to give in to patient demands and prescribe medically unnecessary treatments may also challenge the ethical principle of distributive justice as treatments and funds for those treatments are finite resources. 55 It is important to communicate your rationale to your patient and remain consistent.

Moral Issues

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Moral reasoning can apply to several arguments suggesting that physicians should not give into unreasonable care requests. Some ethicists argue that providing “futile” care inherently violates professional integrity since it causes more harm than benefit; it may also be considered fraudulent [14]. Scanlon argues that actions are only right if there is a principle permitting them that no one could reasonably reject, to such as those that could cause serious hardship and where there are feasible alternatives. Using this reasoning refutes the argument that multiple small benefits can justify harm to an individual [15]. Millar applies this reasoning to those with unreasonable requests for antibiotics, since it is known that future individuals will incur harm in the form of antibiotic resistance as more physicians give into these requests. He even goes so far as to reason that withholding antibiotics justifies a slightly longer period of the patient being symptomatic, and that antibiotics should only be used if the antibiotic would “ameliorate some substantial risk of irretrievable harm” [16]. Given that der-

matologists are still the most frequent prescribers of oral antibiotics of all medical specialties, this is an interesting and important viewpoint to consider [17]. >>Points of Emphasis 55 Ordinary treatments are morally mandatory and are those which offer a reasonable hope of benefit without excessive risk, pain, or expense, 55 Extraordinary treatments are not a moral imperative and are those that offer no reasonable hope or are excessively burdensome.

From a religious perspective, the Catholic church created definitions for ordinary and extraordinary medical treatment. Ordinary treatments are those which offer a reasonable hope of benefit without excessive risk, pain, or expense, and viewed to be morally mandatory. Extraordinary treatments are those that offer no reasonable hope or are excessively burdensome, and are viewed to be morally optional (ie, not a moral imperative) [4, 18]. Using these classifications can help determine whether the physician is using appropriate treatments by restoring health, improving symptomatology and quality of life.

Legal Issues Much of the legal literature surrounding unreasonable patient demands comes from palliative care and revolves around the concept of futility. A medically futile treatment is one that has no value to the patient. Interestingly, the initial legal landmark cases surrounding futility of treatment (Quinlan, 1976; Cruzan, 1990) were cases that set a legal precedent for patients to refuse medical treatment, even if doing so resulted in the patient’s death [19]. If futility has been established, there is a firm medicolegal precedent that the physician does not have to provide the medical intervention that the patient or surrogate decision maker has requested. In the state of Ohio, if two physicians agree that a patient is irreversibly, terminally ill with no chance of recovery, the physiians may withhold or withdraw care if the patient or patient’s surrogate

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has not found another hospital that will agree to assume care [20]. Although the law allows the patient or the patient’s family to seek care elsewhere, in practice, other institutions are rarely willing to initiate futile medical interventions for a terminally ill patient. When claiming futility, one must be acutely aware of causing persistent distrust of the medical system to any surviving family members. There are less legal data concerning unreasonable care requests for non-terminally ill patients; these cases could be considered to be qualitatively futile, in which the treatment is deemed to have no positive impact on the patient’s quality of life [21]. If a patient suffers harm due to the fact that a physician complied with an unreasonable care request, it does not

exempt the physician from medicolegal action. If common ground and reconciliation cannot be reached, termination of the physicianpatient relationship may be the best option. >>Points of Emphasis 55 If a patient suffers harm because a physician complied with an unreasonable care request, the physician is not exempt from medicolegal action. 55 If a reasonable compromise cannot be reached, termination of the physician-­ patient relationship should be considered.

Case Scenarios

Case 1

Case 2

A 40-year-old man presents with plaque psoriasis limited to the hairline, elbows and knees; overall BSA is 3%. He is troubled by the cosmetic appearance but dislikes the greasy feel of topical medications as well as the need for regular application to control the disease. Pruritus and pain severity are low; he also complains of right knee pain when he jogs. His father had severe psoriasis that limited his career in public relations. He has heard about guselkumab (Tremfya™, Janssen) and adalimumab (Humira™, AbbVie) in advertisements and wants a prescription for one of these biologics because of their published efficacy and infrequent administration. You discuss treatment options and quote from the Food and Drug Administration (FDA)approved package insert that these biologic therapies are approved for “patients with moderate-to-severe plaque psoriasis who are candidates for systemic treatment or phototherapy and when other systemic therapies are medically less appropriate” [22]. You explain that for this reason, you do not feel it is medically appropriate to prescribe either of these medications for him. The patient counters that your decision shows lack of respect for his autonomous medical decision making and that it reflects a paternalistic style of doctoring.

A 16-year-old male demands that all of his moles be removed. He is self-conscious and does not want to be seen by others without his shirt on. He has several clinically benign compound and dermal nevi on his face, neck, and back. Because several of these nevi are located on areas at risk for hypertrophic scarring and considering the lack of medical indication for removal, you express your reluctance to remove the moles. He insists that if you do not do it, he will find someone who will. His parents feel conflicted between considering their son’s wishes and psychological wellbeing and what they perceive to be common sense and your good medical judgment. Case 3 A 50-year-old woman presents for consultation regarding wide excision of a biopsy-confirmed radial growth phase 0.1  mm thick superficial spreading malignant melanoma of the calf. She has read about sentinel lymph node biopsy (SLNB) and staging workup on the Internet and is insistent on having SLNB, magnetic resonance imaging (MRI) and positron emission tomography (PET).

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Case Discussions

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In Case 1, the patient demands therapy that is not indicated (and is possibly contraindicated). It would certainly be reasonable to tailor a topical regimen more compatible with the patient’s sensory preferences or to recommend alternative modalities for localized psoriasis such as the 310 nm Excimer laser. He could be referred to a rheumatologist to evaluate his complaints of knee pain. In this case, the patient has localized psoriasis that can be managed by modalities that are safer and less expensive than biologic therapies. While the high cost of biologic drugs might very well enter into the discussion and decision making, the dermatologist should avoid creating the impression that bedside rationing is the sole basis for the decision. Treatment should be recommended based on appropriateness, treatment guidelines, and good clinical practice. Physicians have an obligation to allocate scarce resources appropriately and fairly, and therefore cost might enter into the decision, particularly when a third party is paying the cost. However, the physician’s primary professional duty is to the wellbeing of the patient. Alternatively, the physician could decide that it is easier and less confrontational to honor the patient’s demands and prescribe guselkumab or adalimumab. The problem with this course is that if the patient is harmed by a side effect of the treatment, the dermatologist would have little defense against having chosen a treatment for which there is a lack of indication both under practice guidelines and the FDA-approved manufacturer’s package insert. Although our legal system recognizes the patient’s right to selfdetermination, i.e. what can be done with one’s body, sound decision m ­ aking is the best defense against malpractice liability [23]. The patient in Case 1, who has a chronic skin condition, may feel a need for some sort of control of the disease process and its treatment, as well as a need to have his preferences and autonomy validated by the dermatologist. If the dermatologist fails to recognize the patient’s role in medical decision making, the patient is likely to mistrust the physician, disregard his or

her advice, and seek care elsewhere until he finds what he is looking for. By listening to the patient’s preferences, the patient’s concerns about his father’s disabling psoriasis can be elicited and validated, and the dermatologist can address the fact that therapy with a biologic agent does not affect the natural history of the skin disease. Paternalism occurs when what the physician thinks is best for the patient takes priority over autonomy and the patient’s desires and values. It is what happens when medical decision making is a one-way street rather than a shared process [23, 24]. Although, as the patient points out, it is not acceptable in contemporary practice, it can be ethically justified when patients lack capacity to make informed decisions or the patients’ demands fall outside of accepted standards of medical practice. In Case 1, the patient who wishes more control in medical decision making accuses the dermatologist of being paternalistic despite the fact that the physician has made a good faith effort to validate the patient’s wishes and to propose an alternative, safer approach that is both clinically and economically appropriate, without precluding future consideration of biologic therapy if clinical circumstances warrant. If the patient continues to be unreasonable in his demand for care, the physician would be justified in advising the patient to seek care elsewhere or, at least, obtain a second opinion. Case 2 is complicated by the fact that the patient has not reached the age of majority and legally lacks standing to give informed consent. Although physicians tend to respect the autonomy of adolescents as near adults, especially as they approach the age of majority (18 in the US and Canada), adolescents often live in the present with a limited grasp of the future, care about things out of proportion to their actual importance, may be disproportionately influenced by perceived peer impressions, and fail to recognize the long-term consequences of their decisions. Indeed, adolescence shares features of childhood and adulthood, and adolescents are risk-takers. Even if the adolescent had the

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legal standing to give informed consent, for example, as an “emancipated minor”, the physician is not obligated to suspend professional judgment to satisfy the patient’s demands. By validating the patient’s concerns in a nonjudgmental way, thoroughly detailing the risks and benefits of the surgical procedures, involving both the patient and parents (while focusing on the patient) in the decision, the demanding behavior of the teenaged patient can hopefully be channeled into constructive decision making. In addition, the economic reality of lack of insurance coverage for an entirely cosmetic procedure might also temper the patient’s demands (or certainly impact how the parents feel). A satisfactory compromise might be to agree to excise one or two nevi and allow the patient, parents, and physician to assess the cosmetic outcome before proceeding with further procedures, recognizing that a good (or bad) result does not guarantee identical results in future procedures. Case 3 has many features in common with Case 1. The patient has read about SLNB, MRI, and PET scanning on the Internet and regards these as the current standard of care for

Summary Shared medical decision making, in which physicians and patients collaborate on a plan of care based on equally communicated values and goals, is the most commonly used framework for modern medical decision making. One potential challenge to shared decision making occurs when patients have a strong desire for a treatment that is not medically indicated. The reason for the request should be explored and, in some cases, a justification for treatment or further work-up may be found. If, after discussion, the treatment is still thought to potentially cause more harm than good, is not medically necessary, or is qualitatively futile, the physician is under no obligation to provide such treatment. These cases reflect an interesting balance of valuing patient autonomy, but not placing it above all other values so as to give in to irrational requests.

melanoma. Her expectation of the best and most up-to-date therapeutic and staging procedures is undoubtedly influenced by the anxieties, fears, and uncertainties that accompany the diagnosis of a malignancy. In this case, the physician should validate and recognize the patient’s concerns and fears while at the same time reassuring her of the excellent prognosis of 0.1 mm thick radial growth phase melanoma and the curability by wide local excision alone. If the patient is overly concerned with concerns about metastatic disease and wants these interventions for reassurance, then it is incumbent on the physician to explain the limitations of negative SLNB and medical imaging. The physician should also present current information on the rationale of when SLNB is recommended, versus when it is not [25, 26]. If, despite these explanations as well as an explanation regarding the risks of such procedures, the patient is not persuaded of the lack of indication (if not contraindication) for these procedures, the physician has no obligation to offer the treatment. The physician may suggest a second opinion, if necessary, to help emphasize the lack of utility of this treatment.

Acknowledgments  The authors wish to acknowledge the contribution of Case 1 by Thomas P. Long, M.D.

References 1. Hesse BW.  The patient, the physician, and Dr. Google. Virtual Mentor. 2012;14(5):398–402. 2. Hesse BW, Nelson DE, Kreps GL, et  al. Trust and sources of health information: the impact of the internet and its implications for health care providers: findings from the first health information National Trends Survey. Arch Intern Med. 2005;165(22):2618–24. 3. Sandman L, Munthe C.  Shared decision making, paternalism and patient choice. Health Care Anal. 2010;18:60–84. 4. Bercovitch L. “Give me Enbrel or give me death”: confronting the limits of autonomy. In: Bercovitch L, Perlis C, editors. Dermatoethics. New  York: Springer; 2012. p. 9–12. 5. Council, Affairs oEaJ. Opinion 2.035 futile care. In: Code of medical ethics of the American Medical Association: current opinions with annotations.

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2006–2007 ed. Chicago: American Medical Association; 2006. 6. Varelius J. The value of autonomy in medical ethics. Med Health Care Philos. 2006;9(3):377–88. 7. Fleck LM, Danis M.  How should therapeutic decisions about expensive drugs be made in imperfect environments? AMA J Ethics. 2017;19(2):147–56. 8. America’s Health Insurance Plans. (2016). High-priced drugs: estimates of annual per-patient expenditures for 150 specialty medications. Retrieved from: https:// www.ahip.org/wp-content/uploads/2016/04/HighPriceDrugsReport.pdf. 9. Mehta SJ.  Patient satisfaction reporting and its implications for patient care. AMA J Ethics. 2015;17(7):616–21. 10. Ashworth M, White P, Jongsma H, Schofield P, Armstrong D. Antibiotic prescribing and patient satisfaction in primary care in England: cross-­ sectional analysis of national patient survey data and prescribing data. Br J Gen Pract. 2016;66(642):e40–e6. 11. Cardasis J, Brush DR.  Responding to patient requests for nonindicated care. Virtual Mentor. 2011;13(1):16–20. 12. Brown SL, Beesley H, Holcombe CH, Saini P, Salmon P.  Warranting the decision-maker, not the decision: how healthcare practitioners evaluate the legitimacy of patients’ unprompted requests for riskreducing mastectomy. Patient Educ Counsel. 2019;102(8):1446–51. 13. Mendick N, Young B, Holcombe C, Salmon P. The ethics of responsibility and ownership in decisionmaking for treatment of breast cancer: triangulation of consultation with patient and surgeon perspectives. Soc Sci Med. 2010;17:1904–11. 14. Wreen M.  Medical futility and physician discretion. J Med Ethic. 2004;30:275–8. 15. Scanlon T.  What we owe to each other. Harvard: Harvard University Press; 1998.

16. Millar M.  Constraining the use of antibiotics: applying Scanlon’s contractualism. J Med Ethics. 2012;38(8):465–9. 17. Barbieri JS, Bhate K, Hartnett KP, Fleming-­Dutra KE, Margolis DJ. Trends in oral antibiotic prescription in dermatology, 2008 to 2016. JAMA Dermatol. 2019. [Epub ahead of print]. 18. Kelly G.  Medico-Moral Problems. St. Louis: The Catholic Health Association of the United States and Canada; 1958. p. 129. 19. Clark PA. Medical futility: legal and ethical analysis. Virtual Mentor. 2007;9(5):375–83. 20. Ohio Revised Code, Chapter 2133.01: Modified Uniform Rights of the Terminally Ill Act and the DNR Identification and Do-Not-Resuscitate Order Law. Available at http://codes.ohio.gov/orc/2133. Accessed 27 November 2020. 21. Brody BA, Halevy A. Is futility a futile concept? J Med Philos. 1995;20(2):123–44. 22. Abbott Laboratories. Humira prescribing information. http://www.humirapro.com. Accessed 19 May 2019. 23. Jonsen A, Siegler M, Winslade W.  Clinical ethics. 5th ed. New York: McGraw-Hill; 2002. 24. Beauchamp T, Childress J.  Paternalism: conflicts between beneficence and autonomy. In: Principles of biomedical ethics. 5th ed. New  York: Oxford University Press; 2001. 25. Stebbins WG, Garibyan L, Sober AJ.  Sentinel lymph node biopsy and melanoma: 2010 update part II. J Am Acad Dermatol. 2010;62(5):737–48; quiz 749–750. 26. Stebbins WG, Garibyan L, Sober AJ.  Sentinel lymph node biopsy and melanoma: 2010 update part I.  J Am Acad Dermatol. 2010;62(5):723–34; quiz 735–726.

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Medical Errors, Disclosure, and Safety in Dermatologic Surgery Shannon W. Zullo and Joseph F. Sobanko Contents Introduction and Ethical Framework – 132 Discussion – 133 Conclusion – 137 References – 137

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_14

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nnLearning Objectives 1. To gain proficiency in identifying the ethical considerations inherent to common medical errors in dermatology and dermatologic surgery. 2. To develop a proactive plan of response if faced with a medical error.

>>Points of Emphasis 55 Preventable medical errors often occur as a result of failures in execution or in planning by the physician or healthcare team. 55 Even though not all errors result in patient injury, honesty and transparency in error disclosure are important for maintaining the physician-patient relationship. 55 Patients appreciate full error-disclosure, and provider apology is not associated with a higher likelihood of malpractice litigation. 55 Identification of potential areas of concern in one’s practice can help to decrease the chance for medical error. 55 Development of comprehensive safety protocols and checkpoint procedures for potential error-prone scenarios can prepare physicians and staff for how to best respond when faced with an error.

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Introduction and Ethical Framework Dermatologists perform more cutaneous procedures than any other medical specialty at a rate of approximately 31.6 million cases each year [1]. The technical difficulty of these procedures can range from routine diagnostic biopsies to advanced skin cancer excisions and reconstructions. The volume of procedures performed by dermatologists each year has increased the risk for medical errors. This phenomenon has been previously highlighted in studies reflecting significantly higher rates of medical error and

malpractice litigation for dermatologic surgeons who have been in practice for a longer period of time [2]. The Quality of Health Care in America Committee of the Institute of Medicine (IOM) defines medical error as ‘the failure of a planned action to be completed as intended or the use of a wrong plan to achieve an aim.’ [3] To further simplify, medical errors are often attributed to an error in execution or in planning [4]. However, not all adverse events are medical errors, and not all medical errors are preventable. For example, a situation may be outside of the physician’s control, as with a patient who has an unforeseen adverse reaction to a newly prescribed medication. This is not a medical error. In contrast, if a physician prescribes a drug to a patient with a known allergy, then it is a preventable medical error. While no dermatologist or dermatologic surgeon seeks to intentionally injure a patient, adverse events can happen as a result of human error. Physicians have a professional, moral and ethical duty to be truthful and transparent about medical error. Trust is paramount to the physician-patient relationship and is the foundation of patient-centered care. Previous data have shown significant positive associations between patient trust of their physicians and positive health outcomes including fewer symptoms, higher quality of life, and increased satisfaction with treatment [5]. In this chapter, we will present four common medical errors relevant to dermatologic procedures. While reading through each of the following vignettes, readers should reflect on the ethical implications inherent to each case. Also, readers should consider what they might do if faced with a similar situation. Through careful evaluation of each case, we will set the framework for how to best respond in an ethical and safety-oriented fashion. Lastly, we will provide recommendations for assessment and prevention of potential medical errors in practice.

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Cases

Case 1 A junior resident assists a senior resident with a punch biopsy. After successfully removing the tissue, the senior resident begins to suture the site closed. During tying, the senior resident inadvertently sticks himself with a needle. The senior resident pauses briefly to examine the injury and then continues the procedure. Case 2 A patient’s dermatologist refers her to a local Mohs surgeon for surgical treatment of an infiltrative basal cell carcinoma (BCC). Upon examination, there are two recent biopsy sites on the patient’s cheek. The patient is “fairly certain” that site #1 is the correct location. The surgeon is unable to reach the primary dermatologist to confirm, so he proceeds with the first surgical layer on site #1. Later, the Mohs surgeon receives a message from the primary dermatologist along with biopsy site photos. The photos confirm site #2 as the infiltrative BCC and site #1 as a benign nevus. Case 3 A patient is receiving surgical treatment for a facial skin cancer, and the physician determines that a skin graft reconstruction is indicated. After removing skin from the donor site, the surgeon wraps the tissue in moist gauze and places it on the surgical tray, and

Discussion Adverse events from dermatologic procedures mirror many of those in other surgical fields. Risks of these events are often introduced to patients during the informed consent process. With each cutaneous procedure, standard risks include infection, bleeding, pain, inevitability of scarring, and time for recovery. Clear preoperative communication between dermatologist and patient can set

then proceeds to prepare the defect for repair. A scrubbed nurse is relieved for a break by a second nurse who assists the surgeon by removing soiled materials from the surgical tray. After completing preparations for reconstruction, the surgeon notices that the moist gauze-­wrapped skin graft is missing and has been discarded into the biohazardous waste bin. Out of the patient’s gaze, the surgeon quickly removes the graft from the bin and continues the procedure with the intent to use the graft for the reconstruction. Case 4 A patient is undergoing Mohs surgery for a facial skin cancer and is awaiting the results of pathologic margin assessment in the waiting room. The patient is called back into a surgical room and is informed by the nurse that his cancer has been completely removed. The surgical team will now begin prepping for reconstruction. The Mohs surgeon enters the room and begins the complex linear reconstruction that requires the removal of two additional cones of skin around the excision site. As the surgeon removes the first cone, a second nurse enters the room and asks to speak to the surgeon in the hallway. In the hallway, the nurse notifies the surgeon that the patient was taken into the wrong room. The instruments the surgeon is using were already in use on another patient.

the stage for appropriate expectations as well as a safe and successful procedure. Failure to communicate effectively or to disclose a medical error can erode the physician-­ patient bond and lead to mistrust, and consequently, a higher possibility of malpractice litigation [6]. Previous studies have emphasized patients desire full disclosure of errors, stressing that they want to know why the errors occurred and what steps their physician is taking to prevent future occurrences [7].

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However, immediate disclosure can be difficult for health care professionals for personal and professional reasons. For instance, health care providers often experience guilt, embarrassment and feelings of inadequacy in the wake of a medical error [8]. In addition, fear of legal or professional consequences can also influence a physician to omit rather than disclose. Previous literature has reported several of the most common barriers to reporting medical error to include fear of litigation, lack of a standardized reporting system, difficulty in determination if an event was a medical error, and if responsibil-

ity of the error reporting fell on the healthcare provider or health system [9]. Lastly, physicians and trainees receive little to no training in how to best respond when faced with an error. This void in formal education coupled with a lack of error reporting infrastructure in many care settings can make the disclosure process burdensome. However, regardless of impediments, previous research has shown that physician willingness to disclose directly to patients increased with the severity of the error and potential harm to the patient [10].

Case Analysis

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Case 1 highlights a needlestick injury in a surgical setting. These medical errors are relatively common with an estimated rate of approximately 1 in every 10 operations [11]. In addition to risk of injury, transmission of blood-borne infection (hepatitis B [HBV], hepatitis C [HCV], and human immunodeficiency virus [HIV]) is more likely to occur through percutaneous inoculation than in splash exposures [12]. The majority of infectious transmissions in the operative theater result from ‘high-risk’ sticks with hollow-bore, blood-filled needles [12]. However, suture needle injuries are more common and can also result in blood-borne pathogen transmission [12]. The first ethical consideration highlighted by this case is the moral obligation of any health care professional to intervene on behalf of patient safety. By allowing the procedure to continue after needlestick, the patient is at risk for exposure to blood-borne infection from the resident. The training hierarchy can often be intimidating, as illustrated by the reticence of the junior resident to speak up during the error by the senior resident. However, patients rely on all members of the health care team to practice with their best interests and well-­being in mind. The junior resident has a responsibility to act, ‘see something, say something’, and should politely ask the senior resident to step outside the room to discuss the situation. Furthermore, the senior resident has an ethical obligation to further uphold patient

safety and to report the occupational exposure. The best initial response for the senior resident would be to immediately stop the procedure and step away from the surgical field [12] in order to limit the potential pathogen exposure. However, by continuing the procedure, as in the case, the senior resident also puts not only himself at risk of exposure to patient blood but also the patient at risk of reciprocal bloodborne transmission from exposure to the resident’s blood. This error highlights the ethical principle of non-maleficence or avoidance of intentional harm to patients. In cases where an occupational exposure has occurred, disclosure to both the patient and employer is important in order to protect the health of all individuals involved. Percutaneous inoculation of bloodborne pathogens puts health care professionals at the greatest risk of contracting infections. If a needlestick should occur, physicians should first rinse and wash the affected area with soap and water as quickly as possible. Then, they should abide by the recommendations of their institutional guidelines or immediately report the incident to their supervisor as well as to the patient. If the identity of the exposure patient is known, then blood testing should be performed for HIV, HCV, and HBV with patient consent. The exposed physician should also undergo baseline testing for all potential infections that will be repeated at specific intervals dependent on the patient’s infection status. If the patient’s

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identity is unknown, then the physician should immediately start post-exposure antiretroviral prophylaxis medications in most circumstances. Case 2 explores the ethical challenges associated with a ‘wrong-site surgery’ and stresses the importance of physician-patient communication. Wrong-site surgery is the most prevalent neverevent, in dermatology comprising roughly 19% of the most severe medical errors [13]. The National Quality Forum defines health care never-events as the most severe yet preventable adverse event in medicine [14]. As a result of the severity of this type of error, wrong-site surgeries are also one of the most common causes of malpractice lawsuits against ­dermatologic surgeons [2]. In dermatologic surgery, it is relatively common for a newly-referred patient to present for treatment of skin cancer with uncertainty about the location of her lesion prior to biopsy or without adequate biopsy photos. This uncertainty can occur for many reasons, including confusion due to multiple biopsies performed at the same time, skin cancers occurring in hard to visualize areas, and differences in post-biopsy wound healing. A 2014 Delphi consensus [15] on strategies to decrease the incidence of wrong-site dermatologic surgery recommended a standardized algorithm for confirmation of tumor location. The algorithm emphasizes the importance of physician-­ patient agreement about tumor location prior to surgery and gives recommendations based on levels of certainty from physician and patient. For instance, if surgeon and patient are only moderately certain about the site, then the surgeon should seek further supporting documentation or could also consider performing a frozen biopsy to confirm. In our practice, we implement a similar strategy to prevent possible wrong-site surgery. If the surgeon and the patient are both fully confident that they have identified the correct location, then surgery will proceed. If there is a lack of agreement between surgeon and patient, then a photo of the biopsy site will be used with the patient ultimately confirming the location. If there are no photos of the biopsy site, then communication with the patient’s primary dermatologist will be required. Lastly, if the pri-

mary dermatologist cannot be reached, then the severity of the skin cancer diagnosis will be considered. For example, if the patient is presenting for a low-risk tumor (e.g. nodular BCC, squamous cell carcinoma (SCC) in-situ), then the surgery will be postponed until the location can be confirmed. If the patient presents for treatment of a high-risk tumor (e.g., moderatepoorly differentiated SCC), then frozen-section biopsy of the area(s) will be performed to confirm the correct location. If surgery is performed on an incorrect site, then physicians are ethically obligated to disclose the error for the well-being of the patient. Lack of disclosure of the error puts the patient at risk of increased morbidity and mortality secondary to non-treatment of her remaining skin cancer. Immediate disclosure of the error with acknowledgement of personal responsibility has been previously associated with more favorable patient perception and legal outcomes for physicians [16]. Furthermore, discussion of potential solutions with the patient are equally important, especially with regards to the pending care of untreated skin cancer. Lastly, requirements of health care regulatory bodies (e.g. Joint Commission) include internal investigation of medical errors to prevent future recurrence. A root-cause analysis is one type of investigative method aimed at systematic identification of the underlying causes that contributed to an error and any potential strategies to prevent any future recurrences [17]. There are nine steps in the analysis that include tasks such as identification of the adverse event, recreating the event through flow diagrams, identifying the root cause contributing factors, developing corrective actions and communicating results [17]. Case 3 presents an ethical conundrum related to benevolent deception. In this case, the patient’s skin graft was inadvertently discarded as waste. However, previous research has validated successful decontamination methods for tissue grafts following bacterial exposure. Effective decontamination without deleterious tissue effects can be performed using a wash of 10% povidone iodine or dilute

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chlorohexidine (0.04%) for 60  seconds followed by a saline rinse [18]. Benevolent deception is the ethical concept best illustrated by the expression, ‘ignorance is bliss.’ In this scenario, an argument for benevolent deception could be made based on patient disposition (e.g. is the patient extremely anxious? Will they cease to worry about the use of ‘soiled’ tissue if there is a good clinical outcome?). One could contend that it is more benevolent to proceed with decontamination without disclosing the incident and causing the patient increased stress and anxiety. A related concept, therapeutic privilege [see Chap. 11], similarly describes the withholding of potentially distressing information from a patient with the belief that disclosure will result increased harm or suffering [19]. While benevolent deception and therapeutic privilege seem like reasonable considerations, especially when faced with an anxious patient, physicians have an ethical obligation to respect patient autonomy by disclosing the error. Respect for autonomy implies that patients should be included in decisions about their care and, specifically, decide how they would like to proceed in circumstances like this one. Surgical teams should consider a pre-planned disclosure protocol to thoroughly explain errors and to offer available resolutions to the patient; 1) the skin graft was in the trash, but it can be properly decontaminated with chlorohexidine; 2) the surgeon can take another graft from a second site, but the patient will have additional scarring; 3) the wound may be allowed to heal through second-intent or use artificial grafting materials which will prevent the harvesting of additional tissue but may diminish cosmetic outcome. Honest disclosure and inclusion of the patient into the discussion and planning helps to empower the patient and to maintain trust between patient-physician, despite the occurrence of an error. Case 4 analyzes the never-event error of ‘wrong patient, wrong room, wrong instruments.’ In our practice, we attempt to limit such risk with a new tray dedicated to each patient,

for every step of her care (e.g. a new tray for initial excision, any additional surgical layers, and reconstruction). Each staff member is trained to verify patient name and date of birth before the use of any tray. Additional safety checkpoints are performed through the procedure with timeouts occurring prior to each step in the process. Understandably, implementation of a similar process may be prohibitive for many practices due to staffing or instrument limitations. Another potential safety strategy could be the institution of a ‘1-patient 1-room’ policy prohibiting the switching of surgical rooms during multiple-­step procedures. Regardless of safety protocol and proper training, mistakes can still occur. In the event of an error, it is critical to disclose for the safety and well-being of the patient. Omission of error disclosure would be highly unethical, as the surgeon would be actively deceiving the patient and putting her health at risk from exposure to potential bloodborne infection. Given the error severity, physicians may also want to give special consideration to taking responsibility for the adverse event with an apology. Previous research has shown that proactive communication and apology after medical errors did not contribute to a higher risk of malpractice litigation [20, 21]. In many cases, physician apology after error actually helped to diffuse patient anger after injury [20, 21]. In addition to immediate error disclosure and apology, the surgeon should also recognize the potential for increased psychologic distress to the patient including the development of post-traumatic stress disorder (PTSD) from the event. Full ­acknowledgement and empathy for the severity of the error is important for validating the patient’s concerns. In discussing the incident with the patient, remain calm and express the plan for potential exposure to bloodborne infection (refer to Case 1 analysis for potential strategies). Then, it is advisable to make the reconciliation process as transparent and easy as possible for the patient in an effort to prevent undue stress and the potential for PTSD.

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Conclusion

References

An unexpected medical error can be a startling event for any physician and his or her staff. However, proper safety protocols and open communication can reduce situational anxiety and restore trust between patient and physician. As a field, dermatology can benefit by instilling ethical protocols for common dermatologic surgery errors. It is important to remember that surgeries are not a daily occurrence for patients, and even successful procedures can carry psychological ramifications for patients. Therefore, a surgical error may be one of the most stressful events in a patient’s life, and it is the ethical responsibility of dermatologic surgeons to assuage that stress. Dermatologic surgeons can address the patient’s concerns through empathy and preparation for difficult conversations. Open communication preserves patient autonomy and empowers patient decision ­making. This is vastly superior to the alternative of limiting communication about an error, which may leave the patient feeling deceived or forced into an undesirable situation through an error that was not her fault. Open communication restores trust in even the most precarious situations. Mistakes can and will happen  – to err is human. Nevertheless, medical errors can be reduced through open dialogue between the patient and surgical team and by proactive evaluation for potential areas of concern within one’s practice. As a surgical team, have a discussion about needlesticks and develop a protocol to act quickly and effectively if one occurs. Avoid wrong-site surgery by insisting on multiple levels of confirmation and when possible, photographic evidence of biopsy site. In the event of skin-graft contamination or loss, consider how to best disclose and discuss potential solutions with the patient. Lastly, development of comprehensive safety protocols and checkpoint procedures for each patient can help to prevent never-events similar to the ‘wrong patient, wrong room, wrong instrument’ scenario.

1. Ahn CS, Davis SA, Dabade TS, Williford PM, Feldman SR. Noncosmetic skin-related procedures performed in the United States: an analysis of national ambulatory medical care survey data from 1995 to 2010. Dermatologic surgery: official publication for American Society for Dermatologic Surgery [et al]. 2013;39(12):1912–21. 2. Perlis CS, Campbell RM, Perlis RH, Malik M, Dufresne RG Jr. Incidence of and risk factors for medical malpractice lawsuits among Mohs s­ urgeons. Dermatol Surg. 2006;32(1):79–83. 3. Institute of Medicine. In: Kohn LT, Corrigan JM, Donaldson MS, editors. To err is human: building a safer health system. Washington, DC: The National Academies Press; 2000. p. 312. 4. Grober ED, Bohnen JMA. Defining medical error. Can J Surg. 2005;48(1):39–44. 5. Birkhauer J, Gaab J, Kossowsky J, Hasler S, Krummenacher P, Werner C, et  al. Trust in the health care professional and health outcome: a meta-analysis. PLoS One. 2017;12(2):e0170988. 6. Mazor KM, Reed GW, Yood RA, Fischer MA, Baril J, Gurwitz JH.  Disclosure of medical errors: what factors influence how patients respond? J Gen Intern Med. 2006;21(7):704–10. 7. Gallagher TH, Waterman AD, Ebers AG, Fraser VJ, Levinson W.  Patients' and physicians' attitudes regarding the disclosure of medical errors. J Am Med Assoc. 2003;289(8):1001–7. 8. Ozeke O, Ozeke V, Coskun O, Budakoglu II. Second victims in health care: current perspectives. Adv Med Educ Pract. 2019;10:593–603. 9. Vercler CJ, Buchman SR, Chung KC.  Discussing harm-causing errors with patients: an ethics primer for plastic surgeons. Ann Plast Surg. 2015;74(2):140–4. 10. Gallagher TH, Waterman AD, Garbutt JM, Kapp JM, Chan DK, Dunagan WC, et  al. US and Canadian physicians' attitudes and experiences regarding disclosing errors to patients. Arch Intern Med. 2006;166(15):1605–11. 11. Verbeek J, Basnet P. Incidence of sharps injuries in surgical units, a meta-analysis and meta-­regression. Am J Infect Control. 2019;47(4):448–55. 12. Levitt JO, Sobanko JF.  Safety in office-based dermatologic surgery. Cham, Switzerland: Springer; 2015. 13. Watson AJ, Redbord K, Taylor JS, Shippy A, Kostecki J, Swerlick R. Medical error in dermatology practice: development of a classification system to drive priority setting in patient safety efforts. J Am Acad Dermatol. 2013;68(5):729–37. 14. Agency for Healthcare Research. Never Events 2019 [updated January 2019. Available from: https:// psnet.ahrq.gov/primers/primer/3/Never-Events. 15. Alam M, Lee A, Ibrahimi OA, Kim N, Bordeaux J, Chen K, et  al. A multistep approach to improving

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biopsy site identification in dermatology: physician, staff, and patient roles based on a Delphi consensus. JAMA Dermatol. 2014;150(5):550–8. 16. Gardner AK, Lim G, Minard CG, Guffey D, Pillow MT. A cross-specialty examination of resident error disclosure and communication skills using simulation. J Grad Med Educ. 2018;10(4):438–41. 17. Charles R, Hood B, Derosier JM, Gosbee JW, Li Y, Caird MS, et al. How to perform a root cause analysis for workup and future prevention of medical errors: a review. Patient Saf Surg. 2016;10:20. 18. Mann-Salinas EA, Joyner DD, Guymon CH, Ward CL, Rathbone CR, Jones JA, et  al. Comparison of decontamination methods for human skin grafts.

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Journal of burn care & research: official publication of the American Burn Association. 2015;36(6):636–40. 19. Hodkinson K. The need to know—therapeutic privilege: a way forward. Health Care Anal. 2013;21(2): 105–29. 20. Mayor S.  Explaining and apologizing to patients after errors does not increase lawsuits, finds study. BMJ (Clinical research ed). 2017;359:j4536. 21. Mello MM, Kachalia A, Roche S, Niel MV, Buchsbaum L, Dodson S, et al. Outcomes in two Massachusetts hospital systems give reason for optimism about communication-and-resolution programs. Health affairs (Project Hope). 2017;36(10):1795–803.

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Autonomy, Isotretinoin, and iPLEDGE: The Ethics of Burdensome Regulation and Prescribing Teratogenic Medications Leila Shayegan and Lionel Bercovitch Contents Introduction

– 140

 atient Autonomy – 141 P Justice – 142 Confidentiality – 142

Conclusion – 145 References – 145

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nnLearning Objectives 1. To examine the major ethical concerns in the prescription of teratogenic medications. 2. To identify the various stakeholders: patients, physicians, the fetus, parents, pharmacists and regulatory agencies. 3. To evaluate how attitudes regarding sex and contraception impact the prescription of isotretinoin. 4. To create a framework for thinking critically about different situations involving the prescription of teratogenic medications for nonlife-­threatening conditions. 5. To understand the concepts of positive and negative obligations of the provider in the setting of isotretinoin prescription. 6. To recognize the unique considerations of prescribing teratogenic medications for dermatologic conditions, particularly in populations that may include minors. 7. To understand and apply basic ethical principles to scenarios in order to best uphold the tenets of justice, autonomy, beneficence, and nonmaleficence.

introduction of three increasingly restrictive and burdensome risk-management programs (RMPs). The goal of these programs was to eradicate fetal exposure to this teratogen by preventing women who were already pregnant from receiving isotretinoin or by ensuring that no women became pregnant while the medication was in their systems. These included the Roche Pregnancy Prevention Program (PPP) (1998–2001), the Roche System to Manage Accutane Related Teratogenicity (SMART) program (2001–2005), and the iPLEDGE program (2005-present) [4]. It has become clear that the goal of completely eliminating in utero exposure to isotretinoin, though laudable, is likely unattainable [3]. Despite stringent regulations, there are continued reports of isotretinoin exposure among developing embryos in the US.  There is currently no evidence that iPLEDGE has significantly decreased the risk of fetal exposure to isotretinoin compared to previous pregnancy prevention programs [5–7]. >>Points of Emphasis

Introduction

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Isotretinoin is a highly effective synthetic vitamin A derivative used to treat nodulocystic acne in the United States since 1982. A single-4-5 month course of isotretinoin 1–2  mg/kg/day can clear 60–95% of inflammatory lesions in patients with recalcitrant nodulocystic acne [1]. Unfortunately, the medication is associated with significant adverse effects including teratogenicity. The risk of major congenital malformations in those exposed to isotretinoin during embryogenesis may be as high as 30% [2, 3]. The United States Food and Drug Administration (FDA) has classified isotretinoin as pregnancy category X, meaning that its teratogenicity outweighs its benefits to the pregnant patient. From the time the medication was released, the package insert contained warnings of possible congenital malformations resulting from in utero exposure to isotretinoin (“isotretinoin embryopathy”). Despite these warnings, pregnancies continued to occur, leading to the

Despite stringent regulations, there are continued reports of isotretinoin exposure among developing embryos in the US. There is currently no evidence that iPLEDGE has significantly decreased the risk of fetal exposure to isotretinoin compared to previous pregnancy prevention programs.

The current program, iPLEDGE, was introduced in 2005 to harmonize each manufacturer’s pregnancy risk-management program. There were concerns that the FDA would revoke approval of isotretinoin if in utero exposure was not reduced. The iPLEDGE program imposed such stringent and burdensome requirements on prescribers, patients, and pharmacies that it was initially not well-received. It requires women of childbearing potential to undergo thorough counseling about the teratogenic risks of isotretinoin, registration in a national database, a baseline negative pregnancy test followed by a 30-day lockout, monthly negative pregnancy tests, monthly confirmation of their understanding of the contraception requirements of iPLEDGE and a monthly encounter with the prescriber to

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qualify to fill a prescription for the drug (see . Table 15.1 for the prescription and monitoring requirements among women of reproductive potential, women who are not of reproductive potential, and men) [8]. The methods adopted to prevent pregnancies affected by isotretinoin have raised several ethical concerns and criticisms. Restrictions on patient autonomy, unequally applied regulations, and confidentiality concerns are only a few of the ethical issues raised by isotretinoin risk-management programs.  

Patient Autonomy iPLEDGE intentionally restricts patient reproductive autonomy, requiring women of childbearing potential to agree to practice abstinence or use at least two forms of contraception if they could be or are sexually active. Imposing such restrictions on a patient’s reproductive decisions may be viewed by some as inappropriate interference with the patient’s autonomy. While mandating certain reproductive behavior may be difficult to justify, isotretinoin manufacturers and the FDA are obligated to ensure patients receive sufficient information to make informed reproductive decisions [9]. Undeniably, regulatory agencies have a legitimate interest in preventing serious congenital malformations. Restricting autonomy to prevent harm to a non-autonomous third party, i.e. an embryo, is a compelling argument. In addition, society bears the costs of injuries sustained by such helpless third parties. Just as some states mandate that parents drive with their young children sitting in car seats in order to reduce the risk of serious injury and resultant societal burden [4], iPLEDGE may be justified to reduce the societal burden of birth defects. While the decision to use the medication should be between physician and patient, a risk-management program (RMP) such as iPLEDGE aims to minimize the risk of embryonic exposure to the drug.

..      Table 15.1  Requirements for Prescription and Monitoring among Patients Receiving Isotretinoin [8] Females who can become pregnant

Females who cannot become pregnant, and males

Must obtain prescription within 7 days of pregnancy test

Must obtain their prescription within 30 days of office visit

Submit to a mandatory waiting period of 30 days before they are eligible to begin isotretinoin treatment

No waiting period

Use 2 methods of contraception together for sexual intercourse for at least 1 month prior to, during, and 1 month after isotretinoin treatment

No need for contraception

Have an initial pregnancy test AND a second pregnancy test within the first 5 days of the menstrual cycle after being on 2 iPLEDGE approved methods of contraception, at least 19 days after the initial pregnancy test

No need for pregnancy testing

Fulfill monthly requirements on the iPLEDGE program before receiving each prescription, including a monthly serum or urine pregnancy test

Must be counseled each month regarding the risks of isotretinoin but are not mandated to demonstrate comprehension to iPLEDGE

All patients must be registered with the iPLEDGE Program by the prescriber and sign an informed consent containing warnings about the potential risks associated with the medication. They must also understand that severe birth defects may occur with the use of isotretinoin by female patients and must be reliable in understanding and following instructions. No patients may donate blood during or for 1 month after treatment or share their medication with anyone [8]

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>>Points of Emphasis Restricting autonomy to prevent harm to a non-autonomous third party, i.e. an embryo, is a compelling argument. iPLEDGE may be justified to reduce the societal burden of birth defects.

Justice Another ethical concern is that the iPLEDGE program unfairly limits access to isotretinoin in several ways. First, its regulations are unjust in that they impose significantly more ­restrictions on women of childbearing potential than other patients (. Table 15.1). Additionally, iPLEDGE requirements for literacy (to understand and follow the program), practicing two forms of contraception and access to a registered iPLEDGE prescriber may unjustly limit access of poor, uneducated and geographically remote patients to isotretinoin [4, 10]. As fair and equal access to medical treatment is a reasonable goal, justice is an important ethical consideration. However, different regulations for different populations are justified when the regulatory variation depends on the population characteristics. As patients without func 

tioning internal female reproductive organs cannot become pregnant, there is no reason to test such individuals for pregnancy.

Confidentiality An additional set of ethical concerns raised by the iPLEDGE program involves confidentiality. Recalcitrant nodulocystic acne commonly affects minors, requiring parental consent for treatment. Discussions of sexual activity are invariably of a personal and sensitive nature. A candid conversation about sexual activity may be difficult to achieve with a parent present. Determining the right balance between parental participation and consent and an honest, confidential, physician-patient relationship may be challenging. The question of contraception for minors is not a hypothetical one. According to the most recent published data from the Centers for Disease Control (CDC)‘s Youth Risk Behavior Surveillance System, 40% of high school students had ever had sexual intercourse, including 17% of ninth-grade female students [11]. Nationally, 56% of female high school students were sexually active at the time of the study.

Clinical Scenarios

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Case 11 A 16-year-old girl with severe scarring acne comes to the dermatologist’s office with her mother to discuss initiating isotretinoin therapy. Both she and her mother have read through the available information regarding the teratogenic effects of isotretinoin and are eager for the patient to begin treat-

1

Cases 1, 3, and 4 are adapted from Bloom KE, Bercovitch L. Autonomy, isotretinoin, and iPLEDGE: The ethics of burdensome regulation and use of teratogenic medication. Dermatoethics: Contemporary Ethics and Professionalism in Dermatology. London: Springer. 2011;4:19–24

ment. However, when the dermatologist begins to counsel the patient regarding the importance of contraception while taking isotretinoin, her mother interrupts, insisting that her daughter has never had sex and does not need any form of contraception. For religious reasons, the patient’s mother states that she is opposed to termination of pregnancy and

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when asked, will not leave the room to allow the physician to privately discuss these matters with her daughter. Case 2 A 19-year-old female-to-male transgender patient (transgender male) comes to the office for evaluation of his severe scarring acne. He is currently receiving masculinizing hormone therapy and is desperately requesting isotretinoin. His dermatologist feels that he is a good candidate for isotretinoin and advises him regarding the requirements for iPLEDGE.  Although the patient possesses a uterus and ovaries, he refuses to register as a female, stating that he is already receiving testosterone therapy, has not had a period in months, does not have sex with males, and does not consider himself to be a woman. Case 3* A 21-year-old female college student with severe nodulocystic acne refractory to topical

and oral antibiotic treatments asks to begin isotretinoin therapy. She states that she identifies as a lesbian, does not have sex with men, and wishes to use abstinence as her method of contraception. However, the electronic medical record indicates that she has received emergency contraception at the university health clinic less than 3  months ago. The patient recalls one weekend during which she became drunk at a party on campus but has no recollection of subsequent events. Case 4* A 19-year-old woman with scarring nodular acne presents for treatment with isotretinoin. She is desperate to begin as she finds her acne socially embarrassing. She is willing to comply with her doctor’s recommendations, including pregnancy protection measures as stipulated in the iPLEDGE program. However, on religious grounds, she opposes emergency contraception and abortion.

Case Discussion

General Principles The central ethical principles in each case will be discussed below. However, a few key overarching principles that apply to all of the cases in this chapter should be addressed. First, each case concerns patients of female natal sex. As noted in the introduction, the iPLEDGE program represents a significant burden imposed on prescribers, patients, and pharmacies. Compliance with the requirements of this program highlights the ethical concept of justice in that the regulation is unequally applied. Female patients of childbearing potential undergo rigorous counseling regarding teratogenic risks of isotretinoin, must submit to multiple (negative) pregnancy tests, and are required to register in a national database. Males of any age who are candidates for the medication, by contrast, are not subject to such stringent regulations, requiring only registry membership and a monthly encounter with the

prescriber. Some patients circumvent these regulations by obtaining prescriptions for isotretinoin outside of the United States [12]—however, such cases will not be discussed here. Case 1 Parental consent is required for the prescription of isotretinoin to a minor. Thus, it is imperative that the physician instill an environment of trust and that the issue and means of confidentiality be addressed. Although adolescents may access confidential contraceptive counseling elsewhere, the parent is not obliged to allow the dermatologist a private interview with the patient. A physician who cannot confidentially and privately discuss the patient’s current and past sexual behavior and pregnancy prevention measures mandated by iPLEDGE cannot in good conscience prescribe isotretinoin. The physician may refuse to do so and offer alternative treatments, mention the availability of other providers who may be open to treatment under these

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conditions or ask the patient and parent to ­consider further discussion at a subsequent visit. However, if the physician knows and trusts the patient and the patient pledges abstinence, then it may be appropriate to prescribe isotretinoin within the confines of the iPLEDGE program. Although not a requirement of iPLEDGE, the patient should be made aware that emergency contraception is available over the counter and does not require parental consent in any state [13] and should be educated regarding options for the elective termination of pregnancy, which requires parental consent in most but not all states [14]. Case 2

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The case of a transgender patient requesting treatment with isotretinoin is one that has and will continue to become more common as visibility of the transgender community increases and as hormonal therapy becomes more widely accessible. This is especially true since transgender youth undergoing treatment with testosterone are at increased risk of developing severe acne [15, 16]. Registration in iPLEDGE requires each patient to identify as male, female who cannot get pregnant, or female of childbearing potential [8]. This raises the ethical issues of justice and autonomy in that young transgender men must compromise their right to self-identify by registering as females of reproductive potential [17]. Some may also find it unjust that such youths must commit to abstinence or two forms of birth control, as well as monthly pregnancy tests, when they would be exempt from this requirement had they been born as men.

>>Points of Emphasis Registration in iPLEDGE requires each patient to identify as male, female who cannot get pregnant, or female of childbearing potential. This raises the ethical issues of justice and autonomy in that young transgender men must compromise their right to self-identify by registering as females of reproductive potential. In the case above, the patient must understand that even though he may have testosterone-­ induced amenorrhea, he is still able to become

pregnant [15]. Again, the physician may use her judgment in prescribing isotretinoin to such an individual. If the patient absolutely refuses to register as female, the physician would be deliberately misrepresenting a transgender individual in iPLEDGE by registering him as a male and compromising her own professional integrity [18]. Case 3 This case highlights the difficulties of prescribing a teratogenic medication among young adults who are more likely to engage in dangerous health activities, such as binge drinking. All female patients of childbearing potential, regardless of sexual orientation, must practice either abstinence or use of two forms of contraception in order to be compliant with the iPLEDGE program. Per iPLEDGE guidelines, if abstinence is to be accepted as the primary method of contraception, the patient is committing to abstaining from sex for 1 month before her first dose until 1 month after her last dose. Similar to the previous case, the patient’s autonomy is restricted by iPLEDGE in requiring monthly pregnancy tests when she does not feel she is at risk. We will not belabor the injustice of mandatory testing for females, even those who do not identify as such or have sex with men, as this was addressed in Case 2. If reasonable doubt exists that the patient will be compliant with two forms of contraception or will reliably abstain from unprotected sexual activity, the physician may further restrict the patient’s autonomy by refusing to prescribe isotretinoin. This is particularly true in situations where withholding the medication, such as isotretinoin, would not pose an immediate risk to the patient.

>>Point of Emphasis If reasonable doubt exists that the patient will be compliant with two forms of contraception or will reliably abstain from unprotected sexual activity, the physician may further restrict the patient’s autonomy by refusing to prescribe isotretinoin. Case 4 Although the patient in Case 4 opposes termination of pregnancy or the use of emergency contraception on religious grounds, she has the right

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as an autonomous individual to refuse certain interventions based on her beliefs or value system. She is p ­ repared and willing to adhere to the requirements of the iPLEDGE program. We have no reason to doubt that the patient understands the risks, benefits, and costs of treatment, and as an autonomous individual, she has the right to make medical decisions based on her understanding of the information provided to her. Legally, this right is upheld as the patient has reached the age of consent. Nothing in the iPLEDGE consent materials requires patients to proceed with emergency contraception following unprotected intercourse or termination of unplanned pregnancy while on isotretinoin. However, by the principle of nonmaleficence, the physician may feel some uneasiness

Conclusion Physicians who prescribe isotretinoin are morally and professionally obligated to explain the risks, benefits and alternatives and regulatory requirements related to iPLEDGE associated with isotretinoin therapy. In addition, females of biologic childbearing potential must also be counseled regarding contraceptive requirements, emergency contraception and the options for managing an unplanned pregnancy. Although it can be argued that the program restricts the reproductive autonomy of females, a more compelling argument can be made that it is a necessary tool for fully explaining the risk of isotretinoin exposure for the developing embryo and minimizing such risk. In addition, the risks are greatest for the non-­autonomous embryo which has no way to mitigate this risk yet suffers the consequences of isotretinoin exposure. While not perfect and not without its critics, iPLEDGE has been a consistent and standardized RMP for patients on isotretinoin. It clearly needs to be updated to reduce the stigma and improve confidentiality of iPLEDGE-related monitoring for female-to-­ male transgender patients. While it might or might not have reduced the number of isotretinoin-exposed pregnancies, it is supe-

prescribing isotretinoin to this patient knowing of her religious opposition to pregnancy termination, both due to the cost to society of a child born with serious birth defects and for medicolegal reasons. Should the dermatologist harbor substantial misgivings about prescribing the medication, there are several options that are available. First, she could offer a different treatment strategy for the patient’s acne such as a combination of hormonal contraceptive and spironolactone. She could also refer the patient to a colleague who may feel more comfortable prescribing the medication. Finally, the dermatologist could prescribe the medication after thorough counseling and documentation of the consent process.

rior in design to prior RMPs for this medication and is likely one of the reasons that this indispensable acne medication has not been removed from the US market despite attempts to do so over the years.

References 1. Ward A, Brogden RN, Heel RC, Speight TM, Avery GS.  Isotretinoin. A review of its pharmacological properties and therapeutic efficacy in acne and other skin disorders. Drugs. 1984;28(1):6–37. 2. Schaefer C, Meister R, Weber-Schoendorfer C. Isotretinoin exposure and pregnancy outcome: an observational study of the Berlin Institute for Clinical Teratology and Drug Risk Assessment in pregnancy. Arch Gynecol Obstet. 2010;281(2):221–7. 3. Prevost N, English JC. Isotretinoin: update on controversial issues. J Pediatr Adolesc Gynecol. 2013;26:290–3. 4. Schonfeld TL, Amoura NJ, Kratochvil CJ. iPLEDGE allegiance to the pill: evaluation of year 1 of a birth defect prevention and monitoring system. J Law Med Ethics. 2009;37(1):104–17. 5. Shin JT, Cheetham C, Wong L, et al. The impact of the iPLEDGE program on isotretinoin fetal exposure in an integrated health system. J Am Acad Dermatol. 2011;65(6):1117–25. 6. Henry D, Dormuth C, Winquist B, et al. Occurrence of pregnancy and pregnancy outcomes during isotretinoin therapy. CMAJ. 2016;188(10):723–30. 7. Cheetham TC, Wagner RA, Chiu G, et  al. A risk management program aimed at preventing fetal

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exposure to isotretinoin: retrospective cohort study. J Am Acad Dermatol. 2006;55(3):442–8. 8. The iPLEDGE Program Prescriber Isotretinoin Education Kit. Updated June 2017. https://www. ipledgeprogram.com/iPledgeUI/rems/pdf/resources/ Prescriber%20Isotretinoin%20Educational%20Kit. pdf Accessed 29 May 2019. 9. Doshi A. The cost of clear skin: balancing the social and safety costs of iPLEDGE with the efficacy of Accutane (isotretinoin). Seton Hall Law Rev. 2007;37(2):625–60. 10. Bonebrake R, Casey MJ, Huerter C, Ngo B, O’Brien R, Rendell M. Ethical challenges of pregnancy prevention programs. Cutis. 2008;81(6):494–500. 11. Kann L, McManus T, Harris WA, et al. Youth risk behavior surveillance – United States, 2017. MMWR Surveill Summ. 2018;67(SS8):1–114. 12. Lee KC, Bercovitch L.  Circumventing iPLEDGE: circumventing ethical responsibility? J Am Acad Dermatol. 2017;77(6):1185–7. 13. Office of Population Research at Princeton University. The emergency contraception website: how to

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get emergency contraception. Updated 22 Feb 2019. http://ec.princeton.edu/questions/ecconsent.html. Accessed 29 May 2019. 14. Guttmacher Institute. An overview of consent to reproductive health services by young people. 1 May 2019. https://www.guttmacher.org/state-policy/explore/overview-minors-consent-law. Accessed 29 May 2019. 15. Campos-Muñoz L, López-De Lara D, RodríguezRojo ML, Conde-Taboada A, López-­Bran E. Transgender adolescents and acne: a case series. Pediatr Dermatol. 2018;35(3):e155–8. 16. Turrion-Merino L, Urech-García-de-la-Vega M, Miguel-Gomez L, Harto-Castaño A, Jaen-­Olasolo P. Severe acne in female-to-male transgender patients. JAMA Dermatol. 2015(11);151:1260–1261. 17. Boos MD, Ginsberg BA, Peebles JK.  Prescribing isotretinoin for transgender youth: a pledge for more inclusive care. Pediatr Dermatol. 2019;36(1):169–71. 18. Katz KA.  Transgender patients, isotretinoin, and U.S. Food and Drug Administration–mandated risk evaluation and mitigation strategies: a prescription for inclusion. JAMA Dermatol. 2016;152(5):513–4.

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Dermatoethics in Pregnancy Hannah J. Chang and Lionel Bercovitch Contents

Introduction – 148 Ethical Principles and Fetomaternal Relationship – 148 The Fetus as Patient – 149 I nformed Consent and the Pregnant Dermatologic Patient – 150 Summary of Key Points – 155 References – 156

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_16

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Both authors have no financial or other conflicts of interest to declare.

nnLearning Objectives 1. Understand principles of medical ethics applied to the care of the pregnant dermatological patient. 2. Recognize physician obligations to the pregnant patient and the fetus. 3. Identify when “patienthood” has been conferred to the fetus. 4. Understand the informed consent process and patient autonomy in the pregnant patient. 5. Apply ethical decision making processes in pregnant dermatology patients as it pertains to the fetomaternal relationship.

Introduction The four ethical principles that form the foundation of contemporary Western bioethics as defined by Beauchamp and Childress [1], beneficence, nonmaleficence, respect for autonomy and distributive justice, have been discussed in detail in 7 Chap. 1. In this chapter, we will apply these and other ethical principles as they relate to the dermatological care of the pregnant patient, especially regarding respect for patient autonomy, beneficence toward the pregnant patient and the fetus, decision making capacity, informed consent, and the concept of fetal “patienthood” [1]. Fetal “patienthood” and the p ­ regnant patient’s relationship to the fetus, and their effect on medical decision making will be explored. This chapter will also consider the informed-consent process and its critical role in ethical dilemmas involving the conflicting interests of the pregnant mother and her fetus. The aim of this chapter is to create a framework for thinking critically about ethical dilemmas that arise in the dermatological care of the pregnant patient and the fetus. The case scenarios in this chapter will illustrate this framework in action.  

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 thical Principles and Fetomaternal E Relationship The four basic principles that are considered as the foundation of medical ethics to guide decision making are: beneficence, nonmaleficence, respect for autonomy, and justice [2]. A physician must “seek the greater balance of good over harm for each patient” [3]. Nonmaleficence requires a physician to do no harm, primum non nocere [2]. Justice is fairness and equality, meaning the fair distribution of health resources and deciding who gets what treatment [3]. Respect for autonomy obligates a physician to respect the patient’s values and beliefs and the patient’s decisions made through the process of informed consent [3]. Ethical dilemmas arise when physicians are confronted with conflicting courses of action that create a moral uncertainty [1]. These principles and other ethical frameworks must be considered in resolving ethical dilemmas. Most such dilemmas during pregnancy involve the maternal-fetal relationship, especially when their respective interests are not aligned. While the physician has obligations of beneficence, nonmaleficence and respect for autonomy towards the pregnant patient, there are also obligations of beneficence and nonmaleficence towards the fetus when it becomes a patient [1]. The fetus is not considered autonomous because of a lack of “neurologic development needed to possess values and beliefs” [4]. There is no definitive gestational age where the fetus becomes a patient, but it is generally accepted that the fetus achieves this status around the age of viability or when the pregnant patient confers this status to the fetus [4]. The age of viability is generally considered to be approximately 24 weeks gestation, but with the advancement in fetal interventions, diagnostic capabilities, imaging, genetic testing and intrauterine surgery, the age of viability is likely to decline further with current available data suggesting potential survival for infants born at 22 weeks [5]. Most pregnant women aim towards having a healthy

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baby, but there are situations where the pregnant patient’s interests do not align with the interests of the fetus, and this is where conflicts in the maternal-fetal relationship arise. Central to this conflict are respect for the pregnant patient’s autonomy and the concept of the fetus as a patient [3]. These will be considered next in this chapter. . Table 16.1 summarizes how Beauchamp and Childress’ four ethical principles are applied to the maternal-fetal dyad and case scenarios later in the chapter will illustrate these principles in action in potential real-life scenarios.  

The Fetus as Patient The concept of fetal patienthood is more than an abstract concept, as once the fetus is accorded this status, physicians have an obliga-

tion to protect the interests of the fetus, analogous to their obligations of beneficence, nomaleficence-and respect for autonomy towards the pregnant mother. The fetus is not considered autonomous because it “lacks the neurological development necessary to possess values and beliefs”, and therefore there are no autonomy-based obligations to the fetus [9]. However, at some point, the fetus must be also be considered a patient, at which time, healthcare providers have obligations of beneficence and nonmaleficence toward the fetus, as well. When is that point? According to McCullough and Chervenak [10], that point occurs either when the mother confers the status of patienthood on her previable fetus or when the fetus reaches the gestational age of viability outside the uterus with technological support. Nevertheless, the pregnant patient is obligated only to the extent

..      Table 16.1  Four basic principles of medical ethicsa Principle

Definition of Obligation

Application in the Obstetrical Setting

Beneficence

The principle of acting with the best interests of the patient [2]

To protect and promote the pregnant patient’s well-being and health-related interests while also having a beneficence obligation to the fetus [3, 6]

Non-­maleficence

The principle of avoiding harm and to minimize risks to the patient [2]

To avoid doing harm to the pregnant patient and the fetus [3]

Respect for autonomy

The principle of respecting the patient’s preferences in medical decision making (assuming that decision making capacity is intact and the process of informed consent dutifully carried out in order for the patient to make an informed decision) [2]

To respect the pregnant patient’s right to freely choose specific treatments or no treatment; to respect a pregnant patient’s rights to hold views, make choices, and take actions based on her own personal values and beliefs [6]; there is no autonomy-­based obligation to the fetus because it does not possess its own values and beliefs or a perspective on its interests [7]

Justice

The principle that results in fair distribution of clinical benefits and burdens (health resources) in a population [2]

Pregnant patients should receive equal treatment unless scientific and clinical evidence established that they differ from others in ways relevant to the treatments being considered [8]; healthcare providers must advocate for the just allocation of medical resources to the pregnant patient and the fetus [9]

aAdapted

from [1] and [4]

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that reasonable interventions to benefit the fetus will not harm her [11]. These authors also proposed the concept of provisional patienthood (or dependent moral status) for the previable fetus to protect its interests should the mother later confer patienthood status on fetus. An individual becomes a patient when presenting to a healthcare provider for interventions whose future benefits outweigh harms [10]. Drs. McCullough and Chevernak argue that patienthood occurs when the individual is presented to the physician “for the purpose of applying clinical interventions that are reliably expected to protect and promote the interests of that individual,” and that once the pregnant woman autonomously presents the previable fetus to the physician, the fetus becomes a patient [10]. At that point, the pregnant woman becomes the moral fiduciary of the previable fetus, a conditional role that can be withdrawn only before the fetus attains viability (thus the term provisional) [10]. The lack of universal consensus on the definition of fetal patienthood reflects the diversity of theologic, religious and philosophical approaches to the question [10], and is beyond the scope of this chapter. The American College of Obstetrics and Gynecology (ACOG) has published a committee opinion that the pregnant patient’s autonomy and decision making capacity regarding her pregnancy should be respected regardless of potential fetal consequences [12]. Additionally, in Canadian common law, a fetus does not possess legal rights or status until it is separated from the pregnant woman’s body [13]. In the United States, federal statutes recognize the legal status of the fetus as a victim of violent crime. Only one state constitutionally protects the rights of the fetus, but most recognize personhood of the fetus, many from the time of conception. However, ethics is not the law; the perspectives of the primary stakeholders facing ethical dilemmas are based on personal beliefs

and values, which significantly impact and guide decision making. The physician must utilize ethical principles to resolve ethical dilemmas that arise in caring for the pregnant patient (and fetus) while acting within the law and respecting different perspectives. The ACOG has provided logical guidelines on how to approach the ethical decision process and analyze and resolve ethical conflicts, which are summarized in . Table 16.2 [6].  

Informed Consent and the Pregnant Dermatologic Patient Informed consent is vital to patient autonomy as it is the process of communication and negotiation between the patient and physician that provides the basis upon which the patient makes a decision based on her personal beliefs and values [3]. Legally and ethically, the physician must disclose sufficient appropriate information to allow a reasonable adult to make an informed decision that is free from coercion. It is expected that the patient possesses decision making capacity and is able to comprehend the information provided to make an informed, meaningful decision regarding treatment [3]. There are additional legal stipulations set forth on the federal and state level for informed consent (e.g., signed consents for surgery and procedures), but the ethical concept is based on two major elements: comprehension (understanding) and free consent (i.e., free from coercion) [14]. Furthermore, in the case of a pregnant patient, informed consent should provide adequate information regarding risks, benefits and alternatives for the fetus. If the patient does not have the capacity to make an informed decision, a surrogate decision maker is expected to utilize the provided information, alternatives, and options presented to make decisions based on the patient’s beliefs and values.

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..      Table 16.2  ACOG’s ethical decision making process adapted to the pregnant patient* Steps

Additional Details

1. Identify the decision makers

a. Assess patient’s decision-making capacity b. For patients who lack decision-making capacity, identify a surrogate decision maker who should make decisions that the patient would have wanted or that will promote the patient’s best interests if the patient’s preferences are unknown c. The pregnant patient is the appropriate decision maker for the fetus she is carrying in the obstetric setting

2. Collect data, establish facts

a. Be aware of personal values that may impact the case b. Strive to be as objective as possible when collecting information that will inform a decision c. Use consultants as needed

3. Identify all medically appropriate options

a. Consult other specialties as needed b. Identify other options that the patient or other concerned parties have raised

4. Evaluate options according to the values and principles involved

a. Gather values of all involved parties, with the patient’s values being the most important consideration b. Eliminate options that are morally unacceptable to all parties c. Reexamine remaining options according to each party’s interests and values; combining alternatives can be successful

5. Identify ethical conflicts and set priorities

a. Define the problems in terms of ethical principles involved b. Weigh the principles underlying each of the arguments made c. Consideration of respected opinions on similar cases can be useful

6. Select the option that can be best justified

a. Attempt to arrive at a rational solution to the problem

7. Reevaluate the decision after it is acted on

a. Revisit the evaluation of the major options when the decision is being carried out and determine if the best possible decision was made and any lessons that can be learned from the case

*Adapted from [6]

Case Scenarios and Case Analysis

Case 1* A 32-year-old G1P0 in her 18th week of pregnancy was seen for abrupt onset of a generalized pustular eruption, widespread erythema, and systemic symptoms of one week’s duration. She complained of a first-­time seizure, fatigue, fever, and diarrhea. On exam, there was a generalized superficial pustular rash sparing face, palms, and soles. Laboratory values showed leukocytosis, elevated erythrocyte sedimentation rate, hypocalcemia, elevated liver enzymes, and hypoalbuminemia. Skin biopsy was performed and histopathology showed classic findings for pustular psoriasis, supporting the clinical diagnosis of pustular psoriasis of pregnancy (PPP), also known as impetigo

herpetiformis. The patient was started on prednisone 60 mg daily, but it could not be tapered successfully because of flaring as the dose was decreased. This patient was unresponsive to cyclosporine therapy, which is a pregnancy category C drug. Biologics, narrowband ultraviolet B (UVB) light treatment combined with systemic corticosteroids were also discussed and considered, but her symptoms continued to progressively worsen putting both her health and the fetus’s viability in danger. Therefore, the patient was advised to consider terminating the pregnancy, but she refused; the patient wanted to carry the pregnancy longer to maximize the viability of her fetus. *adapted from [15]).

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Case 1 Analysis

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Pustular psoriasis of pregnancy (PPP) is characterized by potentially fatal progression for both the mother and the fetus if left untreated, as it can cause dangerous electrolyte disturbances, secondary infections and sepsis in the mother, and can lead to placental insufficiency and result in fetal growth restriction, stillbirth or miscarriage [16]. While PPP typically presents in the third trimester, it can present earlier as well. The standard management is to deliver the fetus, as PPP remits quickly postpartum, but in this case of a previable fetus, the physician must evaluate the medically appropriate options according to the values and principles involved. The options in this case are high-dose systemic corticosteroids, low-­ dose cyclosporine (pregnancy category C), infliximab (pregnancy category B), narrowband UVB, and termination of pregnancy in certain situations. Cyclosporine, although a category C drug that may increase risk of premature birth and low birth weight, is considered the best option to control the disease in this acute case, but it was not effective. The physician and the pregnant patient must now navigate the remaining options including termination of the pregnancy or trialing another medication that may not be efficacious given the acuity and urgency of the pregnant patient’s current state, and therefore may not benefit the fetus. Utilizing ACOG’s ethical decision making guidelines, the first step in approaching the ethical dilemma in this case is to identify the decision makers. Assessing this patient’s medical decision making capacity, given her recent seizure and the acuity of her illness, is the highest priority. This requires her to comprehend the information presented to her and appreciate the implications of each option. If it is determined that the patient is incapable of making an informed decision, a surrogate decision maker must be identified. If a medical durable power of attorney has already been established, this makes the process simpler; without one, family members become proxy decision makers. There is a process for determining the appointed surrogate decision maker that varies by location, but generally the first considered is

the closest-related family member, patient’s legal spouse, then an adult child, then the spouse’s parent, then an adult sibling, and lastly an adult close friend [3]. The unmarried biologic father would not be considered legally a closely-related family member. The surrogate decision maker is tasked with the responsibility to make decisions based on the patient’s known or expressed wishes or values and attempt to make decisions the patient herself would have made if she had capacity to make decisions. In the event her wishes are unknown, decisions should promote the best interests of the patient [6]. In the scenario of an incapacitated pregnant patient, the situation is further complicated as the surrogate decision maker needs to also consider the fetus’ best interests. A physician has the obligation to aid the surrogate decision maker in understanding the information and implications of each decision with the patient’s best interest in mind [6]. In the situation where the pregnant patient demonstrates decision making capacity, ACOG’s guidelines state that the physician is obligated to counsel the patient and provide all available options in detail, including benefits and risks to both the pregnant patient and the fetus [6]. Because the fetus has not yet reached the age of viability, counseling should be nondirective [17]. However, if the pregnant patient confers patient status to the fetus or if the fetus has reached the gestational age of viability, directive counseling for fetal benefit or against fetal harm is ethically justified [17]. The decision whether to terminate the previable fetus is the patient’s right, and it is the physician’s obligation to respect the pregnant patient’s autonomy and the decision she chooses. Because the patient does not want to terminate her pregnancy, trialing other therapies that have the potential to improve her current health status is aligned with respecting the patient’s autonomy as well as allowing the fetus a chance to reach a viable age. If the patient remains unresponsive to alternative treatments, continues to deteriorate, which in turn also negatively affects the fetus’s viability, and continues to refuse termination as a last resort, she retains the right to do so. While the physician may not agree with this decision,

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patient autonomy takes priority and must be respected. In the situation where the patient has a surrogate decision maker due to incapacity, the physician’s duty of beneficence to the patient takes priority. Case 2 A 29-year-old G2P1  in her 11th week of pregnancy with a past medical history of malignant melanoma of her right upper arm three years ago presented with ­shortness of breath that started prior to pregnancy and right axillary pain of a few weeks’ duration. On exam, right axillary lymphadenopathy was noted and a core needle biopsy from this node revealed metastatic malignant tumor. PET/CT scan revealed enlarged right axillary lymph nodes, enlarged hilar lymph nodes in the lungs, and multiple metabolically active nodules in the right lung, presumed to be metastatic melanoma. Genetic testing found that the patient’s metastatic malignant melanoma had a V600E mutation in BRAF. Because melanoma has the potential to metastasize to the placenta and to the fetus, her oncologist recommended therapy with an anti-PD1 checkpoint inhibitor, nivolimumab, and an anti-­CTLA4 drug, ipilimumab. It was explained to her that both drugs, being immunoglobulins could cross the placenta, and both had the potential to cause immune-­ mediated fetal harm or alter the fetal or neonatal immune response. Nivolimumab is classified as category D, because of the strong expression of PD-L1 in the placenta and the greater potential for disrupting immune tolerance of the fetus, as well as animal studies in primates that showed an increased risk of first-trimester abortions, but good outcomes in surviving animals [18]. Ipilimumab is classified as pregnancy category C, as the role of CTLA-4 in immune tolerance of the fetus is more uncertain [18], although animal studies in primates have shown an increased risk of third-trimester miscarriages, stillbirths, premature delivery and infant mortality [19]. However, published case reports of pregnancies in patients receiving either nivolumab [20], ipilimumab [21]or both [22, 23] showed successful pregnancy outcomes (although the baby exposed to nivolumab in utero was born with congenital hypothyroid-

ism, possibly immune mediated). Consequences of delaying treatment were clearly explained as well; these include progressive worsening of her symptoms and further extension of the malignant melanoma to other systems as well as the fetus. It was explained to her that untreated stage IV melanoma has a median survival of about 6 months, while combination immunotherapy with these two checkpoint inhibitors was associated with a four-year survival rate of 53% [24]. Weighing her options, the pregnant patient desired to carry the fetus to maximize viability and to prevent harm to the fetus’s health; she chose to defer treatment until the baby could be delivered at 32–34 weeks to allow the baby’s lungs to mature, and then begin treatment. Case 2 Analysis Malignant melanoma (MM) often metastasizes to the lymph nodes, lungs, liver, spleen, and brain. Approximately one-third of women diagnosed with melanoma are of childbearing age [25]. In the pregnant patient, melanoma can very rarely metastasize to the placenta and lead to congenital melanoma [26]. Decisions regarding treatment options should be guided by the impact of pregnancy on the patient’s disease outcome, the gestational age and risk of metastasis to the placenta and fetus, and the risks to both mother and fetus of various treatment options for metastatic melanoma during pregnancy [26]. Following ACOG’s guidelines for this case, it is the physician’s obligation to ensure the patient has decision making capacity and fully comprehends the implications of each option presented to her. If capacity is established, the physician then has the responsibility of collecting data, including understanding the pregnant patient’s personal values that impact her decision making. A multidisciplinary team approach may also be warranted in this case. Evaluation and consensus by the dermatologist, oncologist, obstetrician and neonatologist to discuss all possible treatment options empowers the patient to make an informed decision based on her preferences and values. The pregnant patient has stage IV metastatic

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melanoma and with the positive V600E BRAF mutation, is a candidate for a BRAF inhibitor or immunotherapy with checkpoint inhibitors. Alternative options such as interleukin-2 and conventional chemotherapy are contraindicated in pregnancy carrying significant risks to both the pregnant patient and the fetus. Combination immunotherapy with nivolumab and ipilimumab offers the best chance for prolonged survival, but with uncertain effects on the fetus and significant immune-mediated toxicities. Offering and recommending cancer treatment in pregnant patients can be ethically challenging. The physician may choose to apply beneficence-based obligations to both the pregnant patient and the fetus wherein three scenarios may take place [17]. The first is when the cancer treatment reduces the pregnant patient’s risk of mortality or morbidity while not increasing the fetus’s risk of iatrogenic mortality or morbidity  – this is when a physician’s beneficence-­based obligation to the pregnant patient and the fetus are congruent [17]. The second is when the cancer treatment reduces the pregnant patient’s risk of mortality or morbidity by treating the malignant disease while increasing the risk of iatrogenic future infertility – in this scenario the obligations are incongruent for the pregnant patient [17]. In the third case, cancer treatment reduces the pregnant patient’s risk of mortality or morbidity from the melanoma but increases the fetus’s risk of iatrogenic mortality or morbidity – obligations here are incongruent for the pregnant patient and the fetus [17]. As in the previous case, the pregnant patient retains the right to confer the previable fetus with patient status if she wishes. In the case that the fetus is viable, directive counseling to recommend against choices that may be harmful to the fetus, while balancing beneficence and nonmaleficence-based obligations to the fetus with beneficence and nonmaleficence and autonomy-based obligations to the pregnant mother. Respect for patient autonomy takes precedence over obligations of beneficence to the patient and beneficence to the fetus, with the explicit understanding that the physician has exhaustively detailed medi-

cally appropriate options and the associated implications during the informed consent process. In this situation, there is a greater likelihood of benefit than harm to both the pregnant woman and her fetus, but ultimately she must evaluate these treatment options based on her values and the degree of risk she is willing to assume regarding her life and future fertility as well as the well-being and viability of the fetus. After the physician has completed due diligence in the informed consent process, ultimately, the decision is the pregnant patient’s right to make. Case 3 A 34-year-old G3P2 in her 28th week of pregnancy presents requesting cosmetic procedures. She typically receives botulinum toxin type A (BTX-A) injections every 4–6 months with her last injections done prior to becoming pregnant. She would also like sclerotherapy for her spider and reticular leg veins that have worsened during pregnancy. She is a salesperson for a skincare company, and it is essential to her that she look her best to represent her company. She says she has conducted research online and found that there were no adverse fetal effects or risks from BTX-A in pregnancy and believes that because she is in her second trimester, the fetus won’t experience adverse effects. Her dermatologist has not performed BTX-A injections or sclerotherapy in a pregnant patient before and from a preliminary search, the physician has not found persuasive data on the safety of these procedures during pregnancy. The physician advises the patient against both procedures because the effects on the fetus have not been fully studied. The patient maintains that she thinks there are no ill effects to the fetus and would like to proceed with both, as she believes her image is critical to her livelihood. Case 3 Analysis There is a lack of high-quality evidence regarding the safety of aesthetic procedures during pregnancy, which is not unexpected because of the ethical restrictions on performing these types clinical trials in pregnant women [27].

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While there is a lack of data from randomized controlled clinical trials or consensus among experts relating to fetal safety of aesthetic interventions during pregnancy, clinical decisions must therefore be based on lower quality data, such as retrospective case series. At 28 weeks, the fetus has achieved patient status, and the physician has obligations of beneficence and nonmaleficence towards the fetus, but also has a duty to respect the pregnant woman’s autonomy as well, creating a moral dilemma. The unknown risks to the fetus may outweigh the temporary cosmetic inconvenience to the pregnant patient. According to ACOG’s guidelines for ethical decision making in obstetrics, the physician must consider the needs and values of the patient in this process [6]. Given the fetus’s patient status though, one can make a case for providing directive counseling in this situation in order to prevent fetal harm. Regardless, the dermatologist is not required to comply with the patient’s request for the procedure if he or she believes there is even a minimal risk to the fetus. However, the pregnant patient with decision making capacity is able to make the decision to proceed with the procedure with another willing physician after a patient-centered informed consent process is carried out. Informed consent should provide the patient with all relevant information on the risks, benefits, and alternatives for the pregnant patient and for the fetus [4]. It should be free of coercion and the patient should have sufficient comprehension as well as decision making capacity to make an informed decision [4]. Many options are ethically acceptable in this case. If the physician decides to proceed with the procedures, this fulfills the ethical principle of respecting the pregnant patient’s autonomy. One could argue that the benefit of

Summary of Key Points The management of pregnancy-related dermatoses and esthetic procedures during pregnancy is challenging due to the complex maternal-fetal relationship as both the pregnant patient’s health and the fetal

the procedure to the pregnant patient in terms of mental and financial health may outweigh the little to no risk the procedure may have for the fetus. It is also ethically acceptable for the dermatologist to refuse to perform the procedure and refer the patient to another physician for a second opinion, as this is a non-essential procedure and the physician is fulfilling the obligation of non-maleficence to the fetus. For sclerotherapy, it is known that the sclerosing solutions can cross the placenta, and the procedure is absolutely contraindicated in the first trimester and after week 36 of a pregnancy [28]. There have been small case studies finding that there was no increased risk of adverse fetal outcomes along with case reports where sclerosants were used inadvertently during pregnancy [29, 30]. However, it is also known that spider and reticular veins likely will improve postpartum, so to minimize potential harm to the fetus, delaying this procedure for 6–12 months postpartum is safest [31]. Based on its chemical properties, BTX-A likely does not cross the placenta and if injected properly, either intramuscularly or intradermally, it probably does not reach significant systemic concentrations [32]. Furthermore, even in cases of maternal botulism, botulinum toxin has not been detected in patient serum [32]. In addition, a study of 232 patients who received botulinum toxin type A during pregnancy for cosmetic and noncosmetic indications showed an adverse pregnancy outcome equal to background rates in the nonexposed pregnant population [33]. While there is more than one ethically acceptable resolution of this ethical conflict, it is important for the physician to ensure that patient autonomy is respected and alternatives, risks, and benefits of each available option are provided. Communicating uncertainty should be done in a way that does not diminish patient autonomy.

compromise in treating the pregnancyrelated dermatoses need to be fully addressed and considered when initiating therapy [16]. The reader should take away the following key points when faced with ethical dilemmas in the dermatologic obstetric setting.

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Key Points 1. Obstetrical ethics obligates a physician to follow the principles of beneficence and respect for patient autonomy to the pregnant patient as well as beneficence and nonmaleficence to the fetus. 2. Maternal-fetal conflicts arise when the pregnant patient’s interests are incongruent with the physician’s judgment of the fetus’ interests. 3. Physicians should help to resolve ethical conflicts by identifying and addressing obligations of the four ethical principles to the pregnant patient and the fetus. 4. The pregnant patient with decision making capacity can confer, withdraw, or withhold patient status to the previable fetus.

References

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1. Schwager Z, Bercovitch L.  Dermatoethics in pregnancy. In: Kroumpouzos G, editor. Text atlas of obstetric dermatology. Philadelphia: Wolters KluwerLippincott Williams & Wilkins; 2014. p. 267–72. 2. Beauchamp TL, Childress JF. Principles of biomedical ethics. 5th ed. New York, NY: Oxford University Press; 2001. 3. DiGiovanni LM. Ethical issues in obstetrics. Obstet Gynecol Clin N Am. 2010;37(2):345–57. 4. Kroumpouzos G, Bercovitch L.  Ethics of esthetic procedures in pregnancy. Int J Womens Dermatol. 2018;4(4):194–7. 5. Mercer BM.  Periviable birth and the shifting limit of viability. Clin Perinatol. 2017;44(2):283–6. 6. ACOG Committee Opinion No. 390. Ethical decision making in obstetrics and gynecology. Obstet Gynecol. 2007;110(6):1479–87. 7. Chervenak FA, McCullough LB.  The fetus as a patient: an essential concept for the ethics of perinatal medicine. Am J Perinatol. 2003;20(8):399–404. 8. Chervenak FA, McCullough LB, Levene MI.  An ethically justified, clinically comprehensive approach to peri-viability: Gynaecological, obstetric, perinatal and neonatal dimensions. J Obstet Gynaecol. 2007; 27(1):3–7. 9. Chervenak FA, McCullough LB. Women and children first or last? The New York declaration. Am J Obstet Gynecol. 2009;201(4):335. 10. McCullough L, Chervenak F. Ethics in obstetrics and gynecology. New York: Oxford University Press; 1994. 11. Chervenak FA, McCullough LB.  Ethics in obstetrics and gynecology. An overview. Eur J Obstet Gynecol Reprod Biol. 1997;75(1):91–4.

5. In the case of a viable fetus, or a previable fetus upon whom the mother has conferred patient status, the physician assumes obligations of beneficence and non-maleficence to the fetus. 6. It is ethically necessary for a physician to incorporate a thorough informed consent process to uphold the principle of respect for patient autonomy. 7. Ultimately, respect for patient autonomy in a patient with capacity takes precedence over obligations of beneficence and non-maleficence to the pregnant woman and her fetus; the state of pregnancy does not render the pregnant patient incapacitated.

12. No CO. 664: refusal of medically recommended treatment during pregnancy. Obstet Gynecol. 2016;127(6):e175–82. 13. Flagler E, Baylis F, Rodgers S.  Bioethics for clinicians: 12. Ethical dilemmas that arise in the care of pregnant women: rethinking “maternal-fetal conflicts”. CMAJ. 1997;156(12):1729–32. 14. ACOG Committee Opinion No. 439: Informed consent. Obstet Gynecol. 2009;114(2, Pt 1):401–8. 15. Vaidya DC, Kroumpouzos G, Bercovitch L. Recurrent postpartum impetigo herpetiformis presenting after a "skip" pregnancy. Acta Derm Venereol. 2013;93(1): 102–3. 16. Trivedi MK, Vaughn AR, Murase JE. Pustular psoriasis of pregnancy: current perspectives. Int J Women's Health. 2018;10:109–15. 17. Chervenak FA, McCullough LB, Knapp RC, Caputo TA, Barber HRK. A clinically comprehensive ethical framework for offering and recommending cancer treatment before and during pregnancy. Cancer. 2004;100(2):215–22. 18. Johnson DB, Sullivan RJ, Menzies AM.  Immune checkpoint inhibitors in challenging populations. Cancer. 2017;123(11):1904–11. 19. U.S. Food & Drug Administration Yervoy (Ipilimumab) prescribing information. Accessed 2 Sep 2019. Available from: https://www.accessdata.fda.gov/drugsatfda_docs/ label/2015/125377s073lbl.pdf 20. Xu W, Moor RJ, Walpole ET, Atkinson VG. Pregnancy with successful foetal and maternal outcome in a melanoma patient treated with nivolumab in the first trimester: case report and review of the literature. Melanoma Res. 2019;29(3):333–7. 21. Mehta A, Kim KB, Minor DR.  Case report of a pregnancy during ipilimumab therapy. J Glob Oncol. 2018;4:1–3.

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22. Menzer C, Beedgen B, Rom J, Duffert CM, Volckmar AL, Sedlaczek O, et  al. Immunotherapy with ipilimumab plus nivolumab in a stage IV melanoma patient during pregnancy. Eur J Cancer. 2018;104:239–42. 23. Burotto M, Gormaz JG, Samtani S, Valls N, Silva R, Rojas C, et  al. Viable pregnancy in a patient with metastatic melanoma treated with double checkpoint immunotherapy. Semin Oncol. 2018;45(3):164–9. 24. Hodi FS, Chiarion-Sileni V, Gonzalez R, Grob JJ, Rutkowski P, Cowey CL, et al. Nivolumab plus ipilimumab or nivolumab alone versus ipilimumab alone in advanced melanoma (CheckMate 067): 4-year outcomes of a multicentre, randomised, phase 3 trial. Lancet Oncol. 2018;19(11):1480–92. 25. Lens M, Bataille V. Melanoma in relation to reproductive and hormonal factors in women: current review on controversial issues. Cancer Causes Control. 2008;19(5):437–42. 26. Mathew M, Sheik S, Rao K, Burney IA, Sawhney S, Al-Hamdani A.  Metastatic malignant melanoma during pregnancy: case report and a review of the literature. Sultan Qaboos Univ Med J. 2009;9(1):79–83.

27. Trivedi MK, Kroumpouzos G, Murase JE. A review of the safety of cosmetic procedures during pregnancy and lactation. Int J Womens Dermatol. 2017;3(1):6–10. 28. Rabe E, Pannier F. Sclerotherapy of varicose veins with polidocanol based on the guidelines of the German society of phlebology. Dermatol Surg. 2010;36(Suppl 2):968–75. 29. Abramowitz I.  The treatment of varicose veins in pregnancy by empty vein compressive sclerotherapy. S Afr Med J. 1973;47(14):607–10. 30. Reich-Schupke S, Leiste A, Moritz R, Altmeyer P, Stucker M.  Sclerotherapy in an undetected pregnancy - a catastrophe? Vasa. 2012;41(4):243–7. 31. Kroumpouzos G.  Cosmetic procedures in preg nancy: a reappraisal. Skinmed. 2017;15(2):93–6. 32. Tan M, Kim E, Koren G, Bozzo P. Botulinum toxin type a in pregnancy. Can Fam Physician. 2013; 59(11):1183–4. 33. Brin MF, Kirby RS, Slavotinek A, Miller-­Messana MA, Parker L, Yushmanova I, et al. Pregnancy outcomes following exposure to onabotulinumtoxinA. Pharmacoepidemiol Drug Saf. 2016;25(2):179–87.

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Professional Table of Contents Chapter 17 Professional Boundaries: Safeguarding the Physician-Patient Relationship – 161 Chapter 18 Peering into the Gift Horse: The Ethics of Gift-Giving and Receiving in the Physician-Patient Relationship – 169 Chapter 19 Ethics of Treating Family Members – 177 Chapter 20 Healthcare Ethics and Professionalism in Social Media – 185 Chapter 21 Workplace Romance in Dermatology – 199 Chapter 22 Ethically Dealing with Differences: Cultural and Religious Determinants of Healthcare, Extreme Political Views and Bigotry – 209 Chapter 23 Ethics in Caring for Sexual and Gender Minority Patients – 223 Chapter 24 Feet of Clay: The Impaired Dermatologist – 233 Chapter 25 The Ethics of Maintenance of Certification in Dermatology – 251 Chapter 26 The Ethics of Inpatient Consultative Dermatology – 259

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Chapter 27 The Ethical Responsibilities of Physicians during Epidemics– 267 Chapter 28 Ethical responsibilities to economically disadvantaged and marginalized patients – 277 Chapter 29 The Ethics of Skin Cancer Screening – 291

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Professional Boundaries: Safeguarding the Physician-­ Patient Relationship Brandon H. Krupp Contents Introduction – 162 Framing the Issue – 162 Boundaries – 162 Conclusion – 167 References – 167

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_17

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nnLearning Objectives After completion of this chapter, the reader will be able to: 1. Understand the connection between moral values and medical decision making and be able to discuss the moral principles central to the practice of medicine as well as how to decide between competing moral obligations. 2. Understand the reasons behind the existence of a firm boundary prohibiting intimate sexual relationships with patients and how subtle physician and patient behaviors can jeopardize that boundary. 3. Understand the fiduciary obligations doctors have toward patients and discuss issues of conflict of interest and dual agency and how these can impact the physician-patient relationship and patient care.

Introduction

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The most basic human boundary is between our skin and the rest of the universe. One might argue that the dermatologists, in their special focus on the body’s largest organ, are faced most clearly and obviously with boundary issues in every patient encounter. However, the concept of boundaries in medicine has come to include not just issues around touching skin, but also more subtle concepts involving the doctor–patient alliance, personal relationships in and out of the office, interactions with pharmaceutical company salespersons, expectations from patients, the handling of fees, the giving and receiving of gifts, and the supervision of employees, medical students and dermatology trainees [1–3]. As if this was not challenging enough, the definition of “boundary” and what constitutes a “boundary crossing” as opposed to a “boundary violation” is not always universally understood. Understanding boundaries is vitally important for the practicing dermatologist and an awareness of where to draw appropriate personal and professional boundaries has never been more critical.

Framing the Issue No system of moral decision making lays out “rules” for every situation without exceptions [4]. Rather, our ethical principles are created to a large extent from what has been called our society’s “considered moral judgments.” That is, our shared beliefs about what is good or what ought to be done evolve over time and come from the interplay between our moral and philosophical reflection and real-world empiric facts [5]. Bioethics demonstrates the connection between moral values and medical decision making [6]. The evolution of professional ethics in medicine has yielded a set of four principles central to the practice of medicine: patient autonomy, beneficence, non-­ maleficence and justice [4]. Physicians are expected, whenever possible, to apply these principles simultaneously, and to do so in a fair and balanced way with regard to resources and risks [4, 7]. Of course, sometimes a physician cannot respect all of these principles simultaneously. A physician must often decide between competing moral obligations and choose which obligation may outweigh another in a particular situation [4]. In the end, what a physician “ought” to do is guided by what he or she ought to do “all things considered.” [8] Professional boundaries have shifted over time. These are codified by licensing boards and professional societies, thereby affirming the ethical underpinnings of medical practice. Professional codes of ethics are constantly evolving to reflect current moral standards, the changing physician-patient relationship, and societal expectations. Such codes often focus on promoting virtuous behavior thought to be part of an organization’s mission and historical foundations, though they may also forbid behavior once deemed tolerable by society [9].

Boundaries The Oxford English Dictionary defines boundary as “a thing which serves to mark the limits of something; the limit itself, a dividing line.”

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[10] Unfortunately, in medicine, the lines defining so-called professional boundaries are not always bright. Most commonly, professional boundaries in the medical setting establish the limits of a fiduciary relationship in which the patient receives medical care (services) from the physician in return for financial remuneration (fees). These limits imply respect for the patient and his or her autonomy and welfare as well as some professional distance between the physician and the patient [2]. Boundaries in the doctor–patient relationship are an important component of the delivery of medical care in that they establish a safe atmosphere free from exploitation [11] and one that promotes respect for the patient [2]. Maintaining a professional atmosphere is essential for delivering optimal care [12]. Poor understanding of the existence and i­ mportance of such professional boundaries may lead to transgressions and violations [13]. A boundary crossing can be thought of as behavior that is a departure from one’s usual practice and which oversteps the line between professional and non-professional interaction. Boundary crossings are usually not hurtful to the patient, and while they are often early warning signs for more serious behavior, they can sometimes even facilitate treatment.

A boundary violation is behavior that not only transgresses this line but also causes (or could cause) harm to the patient and which seriously disrupts the physician-patient alliance [2, 14]. Not every boundary crossing will lead to a boundary violation. Boundary violations may occur when physicians begin to focus on gratifying their own needs (consciously or unconsciously) rather than those of their patients [15]. In the physician-­patient dyad, the physician is the one with the professional code and legal standards to follow; the responsibility for setting and maintaining clear, appropriate professional boundaries is his or hers [16]. >>Points of Emphasis A boundary crossing can be thought of as behavior that is a departure from one’s usual practice and which oversteps the line between professional and non-professional interaction and do not harm the patient. A boundary violation is behavior that not only transgresses this line but also causes (or could cause) harm to the patient and which seriously disrupts the physician-patient alliance. Boundary violations may occur when physicians begin to focus on gratifying their own needs (consciously or unconsciously) rather than those of their patients.

Case Scenarios

Case 1 Dr. T is a single practicing dermatologist in a relatively small community that borders the one in which he grew up. He has been treating a young woman for severe eczema for many months. He noticed at her first visit that she was attractive and while caring for her, he has become aware that they have similar ­interests and she has a good sense of humor. With each visit, their interactions contain more social conversation and playfulness. He finds that the time taken after the consultation to “say goodbye” is growing. While his custom is to call his patients by their surnames, Dr. T has begun using the patient’s first name and has suggested that she call him by his first name, too. Recently, the treatment has begun to work, and the patient is very pleased that her skin is clearing. She refers to “being able to wear that bikini again.” She says

that she wants to send her mother to see him as well for a problem similar to the patient’s. At the end of their last session, she spontaneously gives him a hug and kiss on the cheek for “being such a great doctor”. Dr. T is considering asking her out for a date. Personal relationships can be difficult to navigate at times. Physicians have the same desire for intimacy and companionship that anyone else has. It is difficult to consistently “turn off ” one’s emotions or feelings for patients, whether they are negative or positive. It is not uncommon for physicians to experience attraction to a patient who may be physically appealing or charming or with whom the physician shares some interest. The prohibition against sexual contact with a patient is well-known and long-standing. Hippocrates recognized the problems inherent in

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a sexual relationship with patients, particularly an erosion of the trust patients must have in their physicians [17]. Physicians must be consistently aware that their education, knowledge base, and skill set as well as their socioeconomic standing in the community create an inherent power differential in the patient-physician relationship [18, 19]. In Case 1 above, Dr. T appears initially to be professional and appropriate in his relationship with his patient. Noticing her attractiveness and sharing humorous moments are not in themselves boundary violations. In the right context, the use of humor, expressing warmth or empathy, exploring common interests, and even at times, self-disclosure might be seen as boundary crossings that actually enhance the treatment relationship and promote an atmosphere of safety [20, 21]. However, when Dr. T began to notice the “post-consultation lingering,” he should have recognized that he was leaving his own consistent, well-travelled professional path. When physicians find that they act in ways that are different from their usual, routine professional behavior, this is the time for self-scrutiny. An honest, straightforward look at the change in one’s behavior or feelings toward a patient, which may include consultation with a colleague, is critical to assess the motivation behind the behavior [21].

>>Points of Emphasis

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Physicians must be consistently aware that their education, knowledge base, and skill set as well as their socioeconomic standing in the community create an inherent power differential in the patient-physician relationship, in order to avoid exploiting patients for their own gratification. Often the concept of the “slippery slope” is invoked [11, 17]. The idea is that inappropriate sexual relationships with patients rarely happen in a single moment, but rather after a long time and with the incursion of more and more intimate boundary crossings. Holding hands, hugging, lingering at the end of a session all may be seen as precursors to more dramatic and inappropriate sexual behavior.

The challenge of maintaining professional boundaries can be made more difficult by the behavior of some patients, especially those with significant character pathology [22] or who suffer from addictions [13]. Some patients, especially those under stress, may turn to the physician to satisfy needs not being otherwise met appropriately by friends or loved ones. Some patients may become openly seductive or flirtatious with the physician. Furthermore, in some settings, especially rural or underserved areas, physicians may find it difficult to avoid their work lives becoming intertwined with their personal lives [23]. and struggle to manage dual relationships with patients [24]. Not everyone subscribes to the “slippery slope” argument. Many disagree with the idea that every boundary crossing, no matter how minor, inevitably leads to a serious boundary violation [21, 25]. Some argue that a focus on concepts of boundaries in the therapeutic encounter is more important than a fixed set of rules regarding what should be done or not be done in patient encounters [26]. All behavior is contextual and consideration of the context in which a particularly concerning behavior occurs is crucial in judging whether a specific behavior has risen to the level of a boundary violation [21] and determining how such behavior should be managed [27]. Often the less than ideal action may appear innocuous or harmless at the outset, but when part of a pattern of behavior, it may lead to “long-term corrosive consequences.” [28] In Dr. T’s case, his early behavior can be seen as less problematic than how he behaved well into the treatment relationship. He allowed her to call him by his first name, for example, which clearly disrupted the professional distance between them and can be seen as an attempt for him to gratify his own need for emotional and romantic closeness with a woman. His later behavior only served to reinforce this position and moved them farther from the physician-­ patient relationship that would focus primarily on her medical needs. It is Dr. T’s responsibility to notice the change in their interactions and begin to set limits on the romantic and personal nature of their relationship, however difficult that might be. If he is unable to restore the purely

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professional relationship, he should straightforwardly share his concerns with his patient and arrange to transfer her care to another physician in a timely way. Would it be possible for Dr. T to have a relationship with this woman after she is no longer his patient? The answer is “maybe.” Psychiatrists have the strictest prohibition about seeing former patients in a romantic setting: “once a patient, always a patient.” While the nature of the treatment relationship may be unique in psychiatry, it can be just as difficult to shift from a professional to a personal relationship in dermatology. Even without appealing to a “slippery slope” argument (that a pattern of increasingly sexualized boundary crossings will inexorably lead to frank sexual behavior) the problem may be that by the time enough “crossings” are noticed, the treatment relationship may have already been harmed. In addition, if a physician holds the belief that his or her relationship with any patient may be quickly changed in order to allow for something personal or romantic to develop, it will be infinitely more difficult to recognize and act upon early signals that inappropriate behavior may be ahead. By the end of the vignette in Case 1, Dr. T may have already lost his objectivity in subtle ways that could have affected his care of the patient in a fashion not readily apparent. Physicians must remain aware of the power differential inherent in the doctor–patient relationship in order to avoid exploiting patients for their own gratification.

>>Points of Emphasis The “slippery slope” argument implies that inappropriate sexual or romantic relationships with patients rarely happen in a single moment, but rather after a long time after a series of more and more intimate boundary crossings. Often the less than ideal action may appear innocuous or harmless at the outset, but when part of a pattern of behavior, it may lead to “long-term corrosive consequences.” Case 2 Dr. P has been treating Mr. W for severe psoriasis. The relationship is professional. Mr. W runs

a successful asset management firm on Wall Street. Dr. P’s son graduated from college with a degree in finance but has not been able to find a job in his field. At his last office visit, Dr. P asks Mr. W if he would consider hiring Dr. P’s son or giving him a paid internship in his firm. Physicians’ fiduciary duties obligate them to place patient interests and welfare above their own. The fiduciary relationship is the cornerstone of trust in the patient-­ physician relationship. Medical care and treatment delivery work best when patients believe physicians work exclusively to support patient health and wellbeing. Physicians promote the welfare of their patients and expect nothing in return other than their fees. In Case 2, when Dr. P asks that his patient, Mr. W, hire his son, Dr. P is changing his role from a patient-centered one that is exclusively focused on Mr. W’s welfare to one that may be perceived by Mr. W as quid pro quo. In this case, the patient may feel obliged to acquiesce to Dr. P’s request because of the good care he has already been given by Dr. P or he may believe that future care could be suddenly and negatively affected if he doesn’t hire Dr. P’s son. A further problem would present itself should Mr. W. agree to hire Dr. P’s son: Mr. W may believe he is to be expected to ignore the usual assessment process for new employees. That is, the belief may exist in Mr. W’s mind that Dr. P’s son should be hired without the customary evaluation, the results of which might have led to Mr. W’s rejecting Dr. P’s son for employment. However, if Mr. W agrees to Dr. P’s request, he has been put in an awkward position, one that may leave him feeling as if his relationship with his doctor has changed for the worse. This example might have seemed less problematic if Mr. W had volunteered to provide Dr. P’s son with a position in his firm. Without the solicitation of the physician on behalf of his son, the patient’s offer might seem to relieve the physician of any concern that he “manipulated” the patient or traded on the professional relationship the physician has with him. However, in the end, the analysis leads to the same place: exploiting the doctor-patient relationship for personal gain jeopardizes the patient’s trust in the physician.

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>>Points of Emphasis Medical care and treatment delivery work best when patients believe physicians work exclusively to support patient health and wellbeing. Physicians promote the welfare of their patients and expect nothing in ­ return other than their fees. However, e­ xploiting the doctor-patient relationship for personal gain jeopardizes the patient’s trust in the physician. Case 3

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Dr. N is a dermatologic surgeon in a large metropolitan area who has treated Mrs. J for several basal cell carcinomas in the past. She returns for a follow-up examination and mentions that her mother was recently diagnosed with leukemia. In response, she has decided to train for a marathon to raise money for the Leukemia and Lymphoma Society. She asks if he would be interested in supporting her with a contribution. At first glance, the example in Case 3 may seem very different from that involving Mr. W and Dr. P since Mrs. J is not directly benefiting from Dr. N’s donation. The issue, however, is arguably the same as in the previous case. These requests complicate the physician-patient relationship. Physicians may be put in uncomfortable positions if they feel they have to explain why they choose not to donate to a specific charity. Or, physicians may even harbor resentment towards patients if they end up donating when they do not really want to. Is it ever appropriate to donate to a patient’s favorite charity or should physicians adopt policies to avoid all such donations? Such policies would be quite reasonable and if consistently and dispassionately enforced, could help relieve the physician of feeling personally challenged by each request. In addition, patients would be less likely to feel personally rejected or denied. (The inverse of this example could also be problematic. So-called “grateful patient fundraising” puts the physician in the role of solicitor [29]. Important issues to consider are the poten-

tial vulnerability of patients due to the disease being treated, conflicts between physicians’ obligations to patients and competing obligations to fundraise, the potential deleterious effects of fundraising on patient care as well as the physicianpatient relationship and privacy issues to name a few) [30, 31]. However, one might argue that these two cases are dissimilar enough to permit different behavior on the part of the physician in each case. In Case 2, the potential boundary violation involves action that has a direct benefit to the physician because of the action or contributions on the part of the patient and the likelihood of negatively affecting the treatment relationship and perhaps the treatment. This seems clearly a boundary violation based upon dual agency. However, in Case 3, the fact that the patient is asking for a charitable donation and would not directly benefit, seems less problematic. Furthermore, one might even argue that this boundary crossing is beneficial to Mrs. J: by making a small contribution to the charity, Dr. L would be seen as quite supportive of the patient’s altruism and that training for a marathon may yield short-term improvements in Mrs. J’s compliance with an exercise regimen and long-term improvements in her health. It is important for the physician to consider these kinds of situations ahead of time when possible and to formulate a coherent, reasonable and consistent way of responding. Physicians should adopt policies that focus on maximizing the welfare of patients. There is no single approach that will fit every possible situation. One physician may adopt a policy of never complying with requests from patients for anything outside of the treatment relationship, whether it is a request to hire a family member or contribute to a favorite charity. Another may take a stance that allows for personal contributions on his part to charities or other beneficiaries that do not directly benefit the patient. As long as such donations are given in a consistent way, there should be relatively little danger of treating some patients preferentially.

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>>Points of Emphasis Is it ever appropriate to donate to a patient’s favorite charity or should physicians adopt policies to avoid all such donations? As long as donations to patients’ causes are given in a consistent way, there should be relatively little danger of treating some patients preferentially.

Conclusion Boundary issues in dermatologic practice are common and can involve a variety of aspects of the doctor-patient relationship. The key ethical principles at work in the clinical setting include patient autonomy, beneficence, non-­ maleficence and justice; they are held as central to the practice of medicine. Boundary crossings are common in medical practice, as are, unfortunately, boundary violations. In some cases, a boundary crossing may be the right and beneficent thing to do, all things considered. The greatest harm from boundary violations occurs if they are not addressed and are allowed to continue unchecked over time [15]. There is no “one size fits all” set of behavioral rules for the physician to follow. Physicians must constantly and critically examine their behaviors and motives to ensure that they continue to promote patient well-being without respect to their own interests. Sensitively addressing boundary crossings and effectively managing boundary violations when they occur are necessary to create the optimal therapeutic environment. Patients should not have any reason to doubt their physicians’ undivided and uncompromising commitment to the patient’s well-being. >>Points of Emphasis Physicians must constantly and critically examine their behaviors and motives to ensure that they continue to promote patient well-being without respect to their own interests. Patients should not have any reason to doubt their physicians’ undivided and uncompromising commitment to the patient’s well-being.

References 1. Bercovitch L, Long TP. Ethics education for dermatology residents. Clin Dermatol. 2009;27:405–10. 2. Gabbard GO, Nadelson C. Professional boundaries in the physician-patient relationship. JAMA. 1995;273:1445–9. 3. Krupp BH.  Ethical issues in forensic m ­ edicine in Rhode Island. Med Health R I. 2005;88:418–20. 4. Beauchamp TL, Childress JF. Principles of biomedical ethics. New  York: Oxford University Press; 2001. 5. Rawls J.  A theory of justice. Cambridge, MA: Belknap; 1971. 6. Bayer R, Fairchild AL. The genesis of public health ethics. Bioethics. 2004;18:473–92. 7. American Medical Association Code of Ethics. 8. Ross WD.  The right and the good. Oxford: Clarendon; 1930. 9. Appelbaum PS. A theory of ethics for forensic psychiatry. J Am Acad Psychiatry Law. 1997;25:233–47. 10. Shorter Oxford English Dictionary. Oxford: Oxford University Press; 2007. 11. Strasburger LH, Jorgenson L, Sutherland P.  The prevention of psychotherapist sexual misconduct: avoiding the slippery slope. Am J Psychother. 1992;46:544–55. 12. Gutheil TG, Gabbard GO.  Misuses and misunderstandings of boundary theory in clinical and regulatory settings. Am J Psychiatry. 1998;155:409–14. 13. Farber NJ, Novack DH, Silverstein J, Davis EB, Weiner J, Boyer EG.  Physicians’ experiences with patients who transgress boundaries. J Gen Intern Med. 2000;15:770–5. 14. Galletly CA.  Crossing professional boundaries in medicine: the slippery slope to patient sexual exploitation. Med J Aust. 2004;181:380–3. 15. Simon RI.  Therapist-patient sex: from boundary violations to sexual misconduct. Psychiatr Clin North Am. 1999;22:31–47. 16. Gutheil TG.  Boundaries, blackmail, and double binds: a pattern observed in malpractice consultation. J Am Acad Psychiatry Law. 2005;33:476–81. 17. Gruenberg PB. Boundary violations. Ethics primer of the American Psychiatric Association. Washington, DC: American Psychiatric Association Ethics Committee; 2001. 18. Blackshaw SL, Miller JB. Boundaries in clinical psychiatry. Am J Psychiatry. 1994;151:293; author reply 5–6. 19. Brody H.  The Healer’s power. New Haven: Yale University Press; 1992. 20. Gabbard GO, Violations B. In: Bloch S, Chodoff P, Green SA, editors. Psychiatric ethics. Oxford: Oxford University Press; 1999. p. 141–60. 21. Gabbard GO.  Commentary: boundaries, culture, and psychotherapy. J Am Acad Psychiatry Law. 2001;29:284–6.

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22. Gutheil TG. Borderline personality disorder, boundary violations, and patient-therapist sex: medicolegal pitfalls. Am J Psychiatry. 1989;146:597–602. 23. Miedema B, Easley J, Fortin P, Hamilton R, Tatemichi S.  Crossing boundaries: family physicians’ struggles to protect their private lives. Can Fam Physician. 2009;55:286–7, e5. 24. Sharma P.  A case of a physician/patient boundary issue in rural practice and measures to avoid or maintain dual relationships. Prim Care Companion CNS Disord. 2015;17(2) https://doi.org/10.4088/ PCC.14|01752. 25. Blatt SJ. Commentary: the therapeutic process and professional boundary guidelines. J Am Acad Psychiatry Law. 2001;29:290–3. 26. Kroll J. Boundary violations: a culture-bound syndrome. J Am Acad Psychiatry Law. 2001;29:274–83.

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27. Benzel E. Boundaries. World Neurosurg. 2019;125:xxvii. https://doi.org/10.1016/j.wneu.2019.03.15 28. Kim SY. The dilemma of hidden ethical dilemmas. Acad Psychiatry. 2004;28:168–9. 29. Collins ME, Rum SA, Sugarman J. Navigating the ethical boundaries of grateful patient fundraising. JAMA. 2018;320(10):975–6. 30. Collins M, Rum S, Wheeler J, et  al. Ethical issues and recommendations in grateful patient fundraising and philanthropy [published online July 17, 2018]. Acad Med. 2018;(11):1631–7. 31. Wright SM, Wolfe L, Stewart R, et al. Ethical concerns related to grateful patient philanthropy: the physician’s perspective. J Gen Intern Med. 2013;28(5):645–51.

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Peering into the Gift Horse: The Ethics of Gift-Giving and Receiving in the Physician-Patient Relationship Lionel Bercovitch Contents Introduction – 170 Discussion – 170  ifts from Patients to Physicians – 170 G Gifts from Physicians to Patients – 172

Analysis of Case Scenarios – 173 Conclusion – 175 References – 176

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_18

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nnLearning Objectives

appreciation for what is perceived by the patient as an extraordinary effort by the physician. The most common scenario is the holiday gift in which individuals present gifts to everyone who has served them well in the prior year from the letter carrier to the dermatologist. Such gifts are gestures of goodwill and usually do not attempt to alter the patient-­ doctor relationship, nor is anything expected in return except, perhaps, a note of thanks. The motives behind gift giving, however, can be subtle and complex. A patient who is “difficult” or non-adherent may give a gift out Introduction of feelings of guilt, a psychological need to be Although the giving of gifts by patients to accepted, forgiven or liked by the physician. A their physicians has been a long-standing and gift may be an attempt by the patient to gain common practice, it has received scant atten- special favor with the physician in the hope of tion in bioethics literature in comparison to getting preferential treatment in the future, for gifts to physicians from industry, and only example, in the scheduling of tests or appointrecently has it received attention in profes- ments. Sometimes, this practice is culturally sional codes of ethics. In addition, a high-­ rooted. On occasion, a small gift, for example, profile case involving the dying Beatles singer baked goods or candy, can immediately preGeorge Harrison and his radiation oncologist cede a request for a disability form or a work note [3]. Regardless, a gift made in expectation also publicized the issue [1]. This chapter will address the questions of of something of value to the donor in return whether and under what circumstances it is fits the definition of a bribe, however subtle it ethical for physicians to accept gifts from might be. Furthermore, although unlikely, if patients and briefly touch on the ethics of giv- the gift was given in exchange for services ing gifts to one’s patients, a subject that has reimbursed by Medicaid or Medicare, it could implicate the healthcare provider under the received little attention in the literature. federal antikickback statute [4]. Resentment can arise if the expected favored Discussion treatment or outcome does not materialize; the physician may experience either an overt or Gifts from Patients to Physicians subconscious feeling of obligation to provide the patient preferential treatment. Problems A gift is defined as “something given voluntarily may also arise if other patients perceive that the without payment in return, or to show favor to gift giver is receiving special treatment. someone, or to make a gesture of assistance; Sometimes, extravagant gifts are made to present.” [2] While common and acceptable in “level the playing field” in the physician-­ social contexts, gifts given in the professional patient relationship and transform it into a context, particularly from patients to health- more personal one, by creating in the recipient care providers, can be problematic and pose a feeling of obligation. An ethically problemsignificant ethical conflicts. atic situation arises when gifts are given in an Gifts can be offered by patients to their attempt to seduce the physician. Accepting physicians for several reasons. Usually, there large or intimate gifts or those accompanied is no secondary gain involved. The donor by evidence of seductive behavior can be perbestows the gift out of a spirit of generosity or ceived as a boundary violation [5]. in appreciation or gratitude. Some individuals What should a physician do if given a gift do so routinely as a token of generosity. by a patient? In ordinary social settings, one is Sometimes, gifts are given to acknowledge expected to graciously accept a gift and 1. To examine the ethical and professional issues of gifts from patients to physicians. 2. To analyze the ethical and professional issues that arise when physicians give gifts to their patients. 3. To evaluate the ethics of physicians becoming directly or indirectly involved in fundraising from their patients.

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171 Peering into the Gift Horse: The Ethics of Gift-Giving and Receiving…

acknowledge thanks. However, the relationship between health care professionals and their patients is marked by a power differential and is therefore defined by professional boundaries that carry a different set of rules and expectations. Physicians also have a fiduciary duty to their patients. They are expected to be altruistic and to place the interests of their patients ahead of any material gain to themselves. The Canadian Medical Association Code of Ethics states that “patients should not be exploited for personal advantage.” [6] Justice demands that all patients have equal access to health care and should not be able to “jump the queue” by virtue of a gift to the care giver. However, physicians are human. Even if one is conscious of the possible motivation of the gift giver and is aware of the possibility that accepting the gift could create an obligation to reciprocate by providing preferential treatment, it may be difficult to subconsciously avoid such an ethical lapse, particularly when the gift is something highly valued by the recipient. Acceptance of a gift is often in the patient’s best interest, since rejection of the gift may imply or be interpreted as rejection of the patient. There should be little ethical concern in accepting a modest token of the patient’s gratitude or esteem, and then acknowledging it with a warm thank-you. Rejecting such a gift can cause hurt feelings and damage the doctor-patient relationship. However, when are gifts no longer considered small? What about monetary gifts? A particularly troublesome situation is one in which the patient either gifts or bequeaths a large sum of money to the physician. If the patient announces it in advance, the patient should be encouraged to donate the money to a charity that is independent of the physician [7]. If the gift or bequest is received after the patient’s death, it should be declined, particularly if it exceeds the family’s means, creates the impression of impropriety, or is likely to create family conflict [7]. Problems can arise if family members contest the will, and in at least two Canadian cases, acceptance of such a bequest led to formal discipline of a physician [8]. It is generally felt that monetary gifts for the physician’s personal use are ethically

problematic and that such gifts should be designated to a charitable fund, non-profit institution, or foundation. Institutions and physicians commonly solicit donations from patients. The solicitation of patients by their physicians in the context of providing medical care can erode the trust that forms the basis of the physician-­patient relationship [9, 10]. Regardless, such donations should not result in expectation of preferential treatment by the institution (although in reality, large donations and trusteeship often do). >>Points of Emphasis 55 The relationship between healthcare professionals and their patients is marked by a power differential and is defined by professional boundaries. 55 Physicians have a fiduciary duty to place the best interests of their patients ahead of any material gain to themselves and should not exploit patients to their advantage. 55 All patients should have equal access to health care and should not be able to get preferential treatment or access by virtue of a gift to the caregiver. 55 Large monetary gifts to the physician should be donated to a charity that is independent of the physician. 55 Bequests received after the death of a patient should be declined to avoid potential family conflict or professional discipline.

Gifts can have a cultural basis. In countries where physician earnings are particularly low, such as developing countries undergoing transformation and former Communist countries, this practice is commonplace and is used to ensure access to better medical facilities and healthcare providers. Much attention has been devoted to the “red envelope” tradition in China. The practice of giving “red envelopes” at important family gatherings and major Chinese holidays is a deeply rooted custom and carries with it an obligation of reciprocity. Over the last few decades, the practice of giving “red envelopes” to physicians has become widespread in China, a practice known as medical guanxi (pronounced “gwon-

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shee”) [11]. Although the term literally means “relationships” or “networks”, it connotes the reciprocal obligation of one party to the other through favors and social exchanges, and is the basis of trust in Chinese business practice. While widely viewed as unethical or corrupt in Western business practice and particularly in Western bioethics (as well as officially by Chinese government health authorities), the practice remains widespread in China, largely as a result of poor physician pay, high stress endured by health care professionals in China, history of medical violence towards physicians, and patient mistrust as well as lack of respect of physicians. Interestingly, Chinese surgeons are more likely to consider “red envelopes” given before a procedure as unethical, in contrast to those given afterward. Despite the recognition that accepting medical guanxi is unprofessional and contrary to concepts of justice in allocation of medical resources, healthcare economic and social conditions in China and deep-rooted social custom have made it hard to eradicate [11]. Although declining gifts that have a cultural basis may be viewed as an affront by some patients, gifts that are inappropriately large or made to ensure access and the favor of doctors should be tactfully declined. Although not strictly gift giving, the bartering of services with patients can be problematic. If the physician is dissatisfied with the services provided by the patient in exchange for medical care or if an injury occurs while providing such services, the doctor-patient relationship can be seriously harmed [12]. Similarly, entering into business arrangements with patients is fraught with risk and can be potentially viewed as a boundary violation [12, 13]. >>Points of Emphasis

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55 Bartering of services is particularly risky as the patient may not deliver the promised service or goods, may perform the services poorly, or may sustain injury while doing so, potentially harming the physician-­patient relationship. 55 Entering into business relationships with patients is considered a boundary violation, and should therefore always be avoided

Gifts from Physicians to Patients There is limited literature on the subject of physicians giving gifts to patients. Indeed, what few publications exist are mostly in the psychiatric literature. There are several types of “gifts” which healthcare providers may give their patients: “free” care (waiver of co-pays or fees), supplies and medications (including free samples), money (small amounts to cover bus fare, medications, or the like), small gifts to mark milestones (e.g., graduation, wedding, new baby), or gifts with monetary value (e.g., event tickets, books). In general physicians are empathetic individuals, devoted to their patients’ well-being. Although there are no specific guidelines, ethical and legal pitfalls have been addressed in the literature. Gabbard and Nadelson, in a classic article on professional boundaries in the physician patient relationship, [12] state that despite the physician’s best intentions, patients may “feel burdened by a sense of obligation that can never be openly discussed with the physician.” Second, especially in the psychiatric setting, these may be a manifestation of countertransference in the therapeutic relationship. As for monetary gifts, Miksanek [14] suggested that physicians avoid giving monetary gifts because (a) the patient may expect such gifts in the future and hurt feelings or feelings of rejection or hostility may result; (b) giving funds to one patient or some patients and not others with similar need creates the dilemma of where to draw the line; (c) providing money is a short-term fix for a deeper, more complex problem; (d) there is no guarantee that the money will be spent for its intended purpose; and (e) there is the potential for legal harm for the physician if the money is used by the recipient in an illegal or harmful way. Routine waivers of copays or discounts violate the US federal anti-kickback statute [15] and can lead to charges of fraudulent billing when private insurers are involved. However, the occasional waiver of a co-payment or provision of discounted care for financial hardship, especially if documented, is unlikely to lead to legal exposure for

173 Peering into the Gift Horse: The Ethics of Gift-Giving and Receiving…

healthcare ­ providers, who nevertheless should be aware of the legal hazards of such discounts. Depending on the motivation for giving, the clinical context and the nature of the gift, gift-giving by physicians to patients may represent a boundary violation. At the very least, physicians should examine why the gift is being given, the possible inequities (do I only give to patients I like?), and the possible consequences or reciprocal obligations incurred. This is not to imply that gift-giving by physicians to patients is proscribed under all cir-

cumstances, as it may be beneficial to the therapeutic relationship [16, 17]. >>Points of Emphasis 55 Gift-giving by physicians to patients can lead to boundary crossings and violations, and thus, physicians engaging in this practice should examine their motives for doing so. 55 Monetary gifts to patients should be avoided. 55 Routine waivers of copayments or discounts violate the U.S. federal anti-­ kickback statute and should be avoided.

Case Scenarios

Case 1 A patient leaves his dermatologist a pair of tickets for the touring blockbuster musical Hamilton, playing locally. The tickets are scarce and have a face value of $350 each but are being sold for much more on the secondary market, the only current source for tickets. Case 2 A patient who has no medical insurance offers his dermatologist a season’s worth of snowplowing services for her home and office in exchange for free psoriasis care and phototherapy. Case 3 A wealthy patient offers his dermatologist and her family free use of his family’s beachfront condominium and boat in Florida during school vacation week. Case 4 A grateful patient, who is cared for by a dermatology resident in his continuity clinic, gives

Analysis of Case Scenarios The cases presented above illustrate different ethical dilemmas surrounding the practice of gift-giving in medicine. There are no hard and fast rules for dealing with these situations, and sometimes the physician must make a decision without much time to ponder all of the ethical

him a holiday card with a crisp $100 bill tucked inside. The resident tells his supervising attending physician about it; the attending advises the resident that he cannot accept it and to return the gift. The patient never returns for follow-up after the gift is returned. Case 5 A patient who has been under the care of his dermatologist for cutaneous T-cell lymphoma for several years has received attentive and empathic care from his dermatologist. The patient is estranged from most of his family, and upon his death, the dermatologist is surprised to find out that she has been bequeathed $750,000. Case 6 A wealthy, grateful patient offers to donate $100,000 to her dermatologist’s research funds to help buy much-needed cutting-­edge genesequencing equipment.

ramifications and consequences of accepting or declining the gift. The physician is first and foremost bound to consider the patient’s interests in deciding how to deal with the gift and then to consider all of the other ethical ramifications. It is also important to consider how best to tactfully express one’s decision and gratitude in a way that will not offend the

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patient, particularly if the gift cannot be accepted. Pragmatic decisions must be made based on the situation, the patient, and the nature and value of the gift, not only on abstract ethical and moral principles. Case 1 illustrates a dilemma for the dermatologist, particularly if he or she has a strong desire to see the musical and has not been able to get tickets. This is an expensive gift and one that is a scarce commodity and in high demand. Ethical considerations aside, it is one which few theatergoers could bring themselves to decline. The physician should certainly be aware of the possible underlying motivation for the gift and should also have the insight to understand what ethical problems accepting this gift could create. Will having accepted this gift compromise the physician’s sense of oneself as an ethical professional? Will it affect clinical judgment in the future? How would it be viewed by the dermatologist’s colleagues? Graciously offering to pay for the tickets (or in the event this is refused, to donate to a favorite charity of the donor) while thanking the donor would create the impression of professionalism. If one were not going to use the tickets, they could be donated to a charity. Case 2 is a “prescription for disaster.” While not strictly a gift, bartering has much in common with gift-giving. While accepting the offer may allow the physician to treat a patient in financial need while maintaining the family’s pride, problems are bound to arise if the snow-plowing is either not done in timely fashion or is not done well, or if the snowplow damaged the property or car of the dermatologist. Similarly, the patient’s psoriasis might not do well or the patient may suffer from an adverse effect of treatment. Alternatively, the patient might ultimately need an expensive biologic therapy that he cannot afford or laboratory testing, the cost of which cannot be adjusted by the physician. In addition, in a group practice in which expenses and income are divided among partners, bartering deprives the partners of income while leaving them to share the burden of the overhead. In this situation, it might be better to arrange to treat the patient for an agreed upon amount the patient’s family can afford.

Case 3 is an example of an extravagant gift. While this patient is wealthy and the gift might not pose an economic hardship, gifts of this magnitude, particularly involving the use of something personal such as a home, do potentially involve a boundary crossing (defined as “a departure from the usual professional relationship that does no harm” as opposed to a boundary violation, which is defined as “a deviation which either exploits or harms the patient”) [18]. In addition to any ethical qualms, the dermatologist and his family might feel particularly uncomfortable about the possibility of something in the vacation home breaking during their stay, or may feel pressure to leave the home in more pristine condition than they found it. Regardless of the temptation to accept this magnanimous gift, it would be preferable to pay market value to rent it or better yet, to politely decline and rent through customary channels if planning travel away for school vacation. The ethical dilemma and boundary issues can be compounded if the donor’s family invites the doctor’s family to stay with them in the condominium over school vacation, particularly if they are not already social friends. >>Point of Emphasis 55 Accepting gifts of a personal nature, particularly if extravagant or accompanied by seductive behavior, can create boundary issues and therefore, should be avoided.

Case 4 is a challenging one. Brendel et al. [18] have considered a similar case in the psychiatric setting. In the psychiatric setting, the issues of boundaries, transference, and the dynamics of the therapeutic relationship play a prominent role in deciding how to act. In this situation, the resident’s self-interest (and the feeling that he or she was deserving of a holiday expression of gratitude) may have been the driving factors in accepting the gift. The supervising attending’s feeling that the resident’s acceptance of the gift was potentially exploitative of the patient should be tempered by nuanced guidance on how best to decline the gift in way that would not alienate or embarrass the patient.

175 Peering into the Gift Horse: The Ethics of Gift-Giving and Receiving…

Was the amount extravagant for the patient’s means? Was this part of a cultural practice? Did the patient have ulterior motives or expectations of reciprocal benefits from the resident? Would it influence the resident’s care of the patient? Would declining the gift be seen as an affront by the patient? The interaction between attending and resident could be a potentially valuable teaching moment. Case 5 deals with the issue of a substantial bequest by the patient. As mentioned previously, a bequest of this magnitude could lead to family conflicts or be perceived as improper. Professional guidelines suggest that this gift should be declined or directed to a charity, charitable foundation or nonprofit institution or organization that would likely have met the approval of the deceased [7]. Accepting the gift for personal use is counter to professional guidelines, and could be grounds for discipline. Case 6 is a challenging one. It would certainly be inappropriate for the dermatologist to accept a gift of $100,000 for personal use. The gift will enhance the dermatologist’s research and enhance her professional reputation. It will also free up some research funds for other purposes. Does the gift come with “strings attached” or the expectations of preferential care? Did the dermatologist solicit the gift on behalf of the institution? Was this done in the setting of a clinical encounter? If so, did this in any way affect the physician– patient relationship? Was the request to the patient made under the duress of care of a patient with a serious cutaneous lymphoma? If approached directly by the development office of the institution, did this is any way compromise the patient’s confidentiality? Does the donor possess the decision making capacity to make such a gift? The AMA Code of Ethics [10] suggests guidelines for solicitation of charitable contributions from patients by physicians: 1. Assurance that contribution is not required to ensure access to quality care. 2. Avoidance of solicitation of patients during clinical encounters. 3. Solicitation through informational materials in reception areas or speaking at fundraising events.

4. Maintenance of confidentiality by not revealing that the patient is under the physician’s care when approached by development staff, unless the patient has consented. 5. Receipt of the patient’s signed consent before releasing any information for fundraising purposes, especially if the physician’s specialty can make it possible to identify the services provided or diagnosis (e.g. HIV specialist, addiction medicine specialist). 6. Referral of patients who spontaneously express a desire to make a contribution to institutional development staff. 7. Awareness that they may be perceived as acting in a professional role when participating in fundraising activities in the general community. Decisions and strategies regarding such gifts should be made with thoughtful consultation among development officers, the physician, department chair, and institutional administration [10].

Conclusion Although there are no written rules that determine a specific value which makes accepting a gift inappropriate or when physicians should or should not accept a gift, sensible guidelines have been offered by several authors [9, 19, 20] and by the AMA Council on Ethical and Judicial Affairs [7, 10]. The sensible rules of thumb offered by Lyckholm [9] are: 1. Never accept personal cash gifts 2. Never accept intimate or extravagant gifts 3. Never let a gift dictate or influence treatment Brendel et al. [18] also recommend c­ onsulting with colleagues or an ethics committee if there is concern that accepting the gift might run counter to professional norms in one’s locale. Gaufberg [21] has offered excellent advice on strategies for rejecting a gift from a patient or setting limits on future gifts, which is quoted and summarized below.

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1. Appeal to general principles; “I appreciate your thoughtfulness but I have a general rule about not accepting gifts. The best gift for me is knowing that you are satisfied with the care provided.” 2. Appeal to professional/ethical standards: “I have appreciated your generosity…but I can’t continue to accept such expensive gifs. It’s an ethical issue. I don’t want these gifts to influence me, and I don’t want my other patients to feel obligated to give me gifts.” 3. Accept a gift on behalf of the entire care team. 4. Suggest a donation to charity in lieu of a cash gift. 5. Reassure the patient if needed, especially in cases where the patient’s culture mandates gift giving in return for medical care, that he will receive the same high standard of care whether or not he brings a gift. In the end, a gift that does not pass the “sniff test”, i.e. one which would make the physician uncomfortable if one’s colleagues or other patients knew about it, or which makes one intuitively uncomfortable should be graciously declined [7]. Conflict of Interest Statement  The author has no relevant financial, professional or personal conflicts of interest to disclose.

References

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1. Glaberson W. Harrison estate settles suit over guitar autographed by dying Beatle. Available at https:// www.­nytimes.­c om/2004/01/17/nyregion/harrisonestate-settles-suit-over-guitar-autographed-bydying-beatle.­html Accessed November 11, 2019. 2. The Random House Dictionary of the English Language. Second ed. Flexner S, editor. New York: Random House; 1987. 3. Canadian Medical Protective Association. Respecting boundaries: The slippery slope. Available at: https://www.­cmpa-acpm.­ca/serve/docs/ela/goodpracticesguide/pages/professionalism/Respecting_boundaries/the_slippery_slope-e.­html Accessed November 11, 2019.

4. Chiaravalotti D. To receive or not to receive, that is the question with patient gifts. Available at: https:// www.­boardvitals.­com/blog/patient-gifts/ Accessed November 11, 2019. 5. Farber NJ, Novack DH, O'Brien MK. Love, boundaries, and the patient-physician relationship. Arch Intern Med. 1997;157:2291–4. 6. Canadian Medical Association. CMA Code of Ethics 2019 Available from: https://policybase.­ c m a .­c a / d o c u m e n t s / p o l i c y p d f / P D 1 9 - 0 3 .­p d f. Accessed November 11, 2019. 7. Council on Ethical and Judicial Affairs. Opinion 1.2.8. Code of medical ethics of the American Medical Association. Chicago: American Medical Association; 2017. 8. Cohen L. Patients bearing gifts can pose problems. CMAJ. 1987;136:408–9. 9. Lyckholm LJ.  Should physicians accept gifts from patients? JAMA. 1998;280:1944–6. 10. Council on Ethical and Judicial Affairs. Opinion 2.3.5 soliciting charitable contributions from patients, code of medical ethics of the American Medical Association. Chicago: American Medical Association; 2017. 11. Zhu W, Wang L, Yang C. Corruption or professional dignity: an ethical examination of the practice of “red envelopes” (monetary gifys) in medical practice in China. Developing World Bioeth. 2017;18:37–44. 12. Gabbard GO, Nadelson C. Professional boundaries in the physician-patient relationship. JAMA. 1995;273:1445–9. 13. Nadelson C, Notman MT.  Boundaries in the doctor-patient relationship. Theor Med Bioeth. 2002;23:191–201. 14. Miksanek T.  Should I give money to my patients? Am Fam Physician. 2003;67:1629–31. 15. 42 U.S.C. § 1320a-7b Available at: https://www.govinfo.gov/content/pkg/USCODE-2010-­title42/html/ USCODE-2010-title42-chap7-subchapXI-­p artAsec1320a-7b.htm. Accessed November 11, 2019. 16. Matorin S. Positive experiences with giving gifts to patients. Psychiatr Serv. 2004;55:1069. 17. Epstein S.  Should therapists give gifts to patients? Psychiatr Serv. 2004;55:835–6. (Commentarty on [16]) 18. Brendel DH, Chu J, Radden J, Leeper H, Pope HG, Samson J, et al. The price of a gift: an approach to receiving gifts from patients in psychiatric practice. Harv Rev Psychiatry. 2007;15:43–51. 19. Weijer C.  Point-counterpoint: should physicians accept gifts from their patients? No: gifts debase the true value of care. West J Med. 2001;175:77. 20. Anderek W.  Point-counterpoint: should p ­ hysicians accept gifts from their patients? Yes: if they are given out of beneficence or appreciation. West J Med. 2001;175:76. 21. Gaufberg E.  Should physicians accept gifts from patients? Am Fam Physician. 2007;76:437–8.

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Ethics of Treating Family Members Sandra Osswald Contents Discussion – 178 Analysis of Case Scenarios – 180 Conclusion – 183 References – 184

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_19

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nnLearning Objectives 1. To understand the ethical and moral arguments for and against treating family members. 2. To explore questions which help to understand the complexities of the dilemma of treating family members in different circumstances.

Discussion

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Physicians are rewarded upon completion of training and licensing to be able to treat patients. But, should they treat their family members? Geiderman et al. [1] write that care of family members, friends, colleagues and self involves three core ethical principles: autonomy, beneficence and nonmaleficence. In patient autonomy, the patient has a right to make a free and unencumbered choice regarding their care. Beneficence describes the physicians’ duty to provide benefit to the patient, and the ethical duty to ensure the best medical care is afforded to the patient by the most qualified person. And, nonmaleficence refers to the duty to do no harm. One should not practice outside of one’s skills, training or knowledge. The American Medical Association Code of Medical Ethics Opinion 8.19- SelfTreatment or Treatment of Immediate Family Members states, “Physicians generally should not treat themselves or members of their immediate families. Professional objectivity may be compromised when an immediate family m ­ ember or the physician is the patient; the physician’s personal feelings may unduly influence his or her professional medical judgment, thereby interfering with the care being delivered” [2]. Medicare’s list of those “immediate family members” (for whom services cannot be billed) includes spouses, parents, children, siblings, stepparents, stepchildren, stepbrothers, stepsisters, children-in-law, siblings-­in-law, grandparents, grandchildren,

and spouses of grandparents or grandchildren [3]. Some states, such as Iowa, may also include anyone living with the physician [4]. >>Points of Emphasis 55 “Professional objectivity may be compromised when an immediate family member or the physician is the patient; the physician’s personal feelings may unduly influence his or her professional medical judgment, thereby interfering with the care being delivered.” [2]

It is evident that there are physicians who have treated and continue to treat their family members. La Puma et al. [3] reported data from a community hospital where 465/691(67.3%) eligible members of the medical staff responded to questions regarding when physicians treat members of their own families. In this study, 99% reported requests from family members for medical advice, diagnosis or treatment. Those who were reported as making requests included spouses (reported by 65% of the respondents), children (59%), mothers (50%), siblings (44%), fathers (43%), nieces and nephews (41%), mothers-in-law (40%) and others (24%). When asked for advice, 57% of physicians reported “almost always” providing it. In addition, 80% had diagnosed medical illnesses, 72% had performed physical examinations, 15% had acted as a family member’s primary attending physician in the hospital, and 9% had operated on a family member. Procedures were most commonly performed on parents, spouses, children and parentsin-­laws. Most procedures listed did not usually require general anesthesia; many were dermatologic. The dermatologic procedures performed included removal of basal cell carcinoma, burn debridement, cryosurgery, excision, laceration repair and nail removal. On the other hand, 56.3% of respondents also reported refusing a family member’s request for diagnosis and treatment. The most common reasons were that the “clinical problem

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was not within the physician’s area of expertise” and “examination and follow-up may be inadequate”. Other cited reasons for refusal included “relationship too close”, “unable to be objective”, “medically not indicated”, “patient needs own doctor”, “prefer not to be involved”, “unethical”, “legal concerns” and “family conflict”. Importantly, 33% reported they had observed another physician “inappropriately involved” in a family member’s care and 22% had given in to a specific request about which they felt uncomfortable. Reagan et al. [5] queried physicians in multiple specialties regarding how frequently physicians treat their relatives, their reasons, and their level of comfort. Of the 2014 physicians, 1292 (64%) questionnaires were analyzed. Their results suggest that most physicians don’t treat their family members often and are less willing to treat them as the “level of complexity, seriousness, and potential for conflict with privacy increase.” However, all forms of care have been given to family members on occasion. The most common reason was for minor prescribing for colds, flu, allergies and oral antibiotics. Most responses were for convenience, but honoring a request from a relative, saving the relative money, acute emergency and pressure from a relative were also given as responses. Of those against treating relatives, comments included lack of objectivity and role conflict. According to the study authors, those who did treat their relatives appeared to be aware of the dangers and were trying to help deliver the best care possible. Most of us could probably relate stories that were positive, gratifying experiences demonstrating optimal patient care in treating family members and yet also stories of involvement that were regrettable, perhaps even harmful. It could be good to have a physician as a family member to help explain difficult or complicated information and to

provide support. But, everyone should realize that there are risks involved when becoming involved in the treatment of a family member, particularly if assuming their primary care. Before you consider medical care of a family member, La Puma and Priest [6] suggest the following questions. Am I trained to meet my relative’s medical needs? Am I too close to probe my relative’s intimate history and physical being and to cope with bearing bad news if need be? Can I be objective enough to not give too much, too little, or inappropriate care? Is medical involvement likely to provoke or intensify intrafamilial conflicts? Will my relatives comply more readily with medical care delivered by an unrelated physician? Will I allow the physician to whom I refer my relative to attend him or her? Am I willing to be accountable to my peers and to the public for this care? These questions should serve you well as you encounter situations in which you are asked to treat a family member. Grushchak and Grant-Kels [7] suggest additional questions that are pertinent to the following cases. Would my relative be better served seeing a specialist? Would the relative feel pressured to adhere to my treatment suggestions when not wanting to go that therapeutic route? How will the relative respond if the treatment has complications? Are there potential future malpractice implications? You should review these questions as you consider the case scenarios that follow. >>Points of Emphasis 55 Am I trained to meet my relative’s medical needs? 55 Can I be objective enough to not give too much, too little, or inappropriate care? 55 Am I willing to be accountable to my peers and to the public for this care? 55 Would the relative feel pressured to adhere to my treatment suggestions when not wanting to go that therapeutic route? [6]

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Case Scenarios

Case 1. Your sister’s 17-year-old daughter has acne and they are not satisfied with her current dermatologist’s care. Your sister is concerned and wants you to prescribe isotretinoin. What would you do? Case 2. Your brother calls and says that his wife, your sister-in-law, has had a groin rash for the last month that won’t go away and he wants you to prescribe a cream for it. What would you do? Case 3. Your 3-year-old son has had a fever, runny nose, congestion and now sore throat for 5  days. You and your spouse have not had a full night’s sleep during that time and your spouse would like you to prescribe him some antibiotics. What would you do? Case 4. Your mother says she has had bad back pain for a week. She has had back pain for many years off and on. She is very busy

Analysis of Case Scenarios

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Case 1 is a case in which you are asked to treat your teenaged niece with isotretinoin for acne. You may feel that this treatment is within your scope of practice and something you do commonly every day. However, consider that a loss of professional objectivity in this case may influence your judgment and the options you offer. Would you worry more about facial scarring in your own niece and would that influence your decision to start isotretinoin and how you administer it? If you prescribe isotretinoin, do you think your niece would feel comfortable refusing you? Douglas [8] writes, “Ethical tenets of autonomy and informed consent are likely to be easily compromised. Family members may feel as though they are offending the physician-relative if, for example, they refuse a particular recommendation.” It might be particularly difficult for a minor child to refuse. Douglas [8] writes further, “Any patient, even a family member, then has the right to ask questions, to refuse the physician’s recommendation and to understand the consequences of his or her choices. The informed consent dialogue might very likely be nonexistent or subpar if a physician were to treat a family m ­ ember.”

and says she has been under a lot of stress lately and can’t afford to take any days off of work. She is tired and is so thankful that she supported you through medical school. She says that she usually needs Percocet to help her get better and to sleep and wants you to write a prescription for her. What would you do? Case 5. Your girlfriend is concerned about her looks. She feels especially, as she is dating a dermatologist, she should look younger than she does. She heard that often, after you use botulinum toxin on a patient, you have a little left over that would go to waste, and while she is in your office she thought you could administer some and also do that fraxel laser rejuvenation you keep saying is working so well on your patients. She is willing to go in after hours or weekends so as not to interrupt you while you are working. What would you do?

What about the risk of pregnancy involved in prescribing isotretinoin? Do you feel comfortable asking and discussing questions about your niece’s sexual activity and what forms of contraception/ birth control she will use? Will she be able to discuss this as well as any feelings of depression with you? Is it possible she may fail to disclose this information for fear of her mother or others in the family finding out? Dickens [9] writes in the FIGO Committee for the Ethical Aspects of Human Reproduction and Women’s Health publication several important concerns. It states, “Informal discussions among family and close friends are not governed by the rules and duties of confidentiality that apply in medical professional relationships, unless secrecy is specifically required. Individuals may therefore be deterred from making disclosures that they would make in a professional setting, such as of contraceptive and other sexual practices and illicit or prescription drug use, for instance, or mental health conditions. Similarly, practitioners may not be as guarded as p ­ rofessional practice requires against deliberate or inadvertent disclosures to members of family or close friendship circles whose members share concerns for each other.” In addition, “Gynecologists’ care and/or treatment of family

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members’ or close friends’ adolescent children can raise issues of particular ethical concern due to adolescents’ sensitivity to revelations they may be asked to make or that may become apparent on examination. Issues of adolescents’ adequately free and informed consent to any such offers of advice and/or intervention can also raise ethical concerns.” Will your niece truly be able to able to disclose important history to you, with full disclosure so that she has adequate informed consent to proceed and have the confidence that confidentiality will be upheld? Finally, what if she does not get better, is not satisfied, or develops a complication? Are you ready to deal with the possible strain in the personal relationship between you and your niece, not to mention between your sister, and perhaps more of the family? Just because you can treat, you treat? Can you objectively deliver care in the best interest of your patient?

her treatment. Will this intimate examination be left out to avoid possible discomfort or conflict? Unless you are sure that you would be able to obtain the history and perform the examination, documentation and follow up required in this case, you should consider referral to another qualified physician. La Puma and Priest [6] write, “Previous intimacies and discarded fantasies are lively, determinedly personal subjects. Family members may not wish to share these sensitive matters with other family members. Patients, however, may wish to share such matters with a medical advisor and may wish to avoid having them become common family knowledge”. By being her physician, are you denying her the ability to disclose all? Again, if she does disclose some confidential information, will you be able to maintain confidentiality throughout her course?

>>Points of Emphasis

>>Points of Emphasis

55 “Any patient even a family member, then has the right to ask questions, to refuse the physician’s recommendation and to understand the consequences of his or her choices. The informed consent dialogue might very likely be nonexistent or subpar if a physician were to treat a family member.” [8]

Case 2 specifically involves treating a family member in a sensitive area. You may know your sister-in-law very well, but are you able to probe into sensitive areas of the medical history and will you perform the complete examination and evaluation necessary to be able to render a diagnosis and recommend treatment? Do you think that she may withhold history regarding sexually transmitted diseases for fear of embarrassment? The AMA Opinion 8.19 statement warns that “Physicians may fail to probe sensitive areas when taking the medical history or may fail to perform intimate parts of the physical examination. Similarly, patients may feel uncomfortable disclosing sensitive information or undergoing an intimate examination when the physician is an immediate family member [2].” Consider that your sister-in-law may refuse a full examination and still wish for you to give

55 “Physicians may fail to probe sensitive areas when taking the medical history or may fail to perform intimate parts of the physical examination. Similarly, patients may feel uncomfortable disclosing sensitive information or undergoing an intimate examination when the physician is an immediate family member.” [2]

Case 3 is a common scenario involving illness in a physician’s own child. There can be loss of objectivity when one may underestimate the seriousness of the child’s illness. Fromme et al. [10] state “Pediatricians estimated that physician-parents were more likely to wait inappropriately long before taking their children to be seen.” Or in some cases, “physicians gravitate straight to the worst condition on a differential diagnosis list when it comes to family [8].” This may lead to a delay in treatment or inappropriate risk. In this case, are you outside of your specialty? The AMA Opinion 8.19 states, “When treating themselves or immediate family members, physicians may be inclined to treat problems that are beyond their expertise or training [2].” Will you do the evaluation you believe a competent pediatrician would do to determine what therapy is best? Would your wife or child object or question your judgment

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and feel free to refuse care from you? Finally, will you document the medical record completely? Have you ever treated your child or perhaps a nephew away at college, without writing a note? Consider making sure that you are trained to deliver the necessary care and then if so, perform the proper documentation so you are accountable to your patient and your peers.

ception of abuse when prescribing controlled substances to family members and you must follow state and for that matter, federal DEA laws. Make sure you are accountable to your peers and public. There may be some emergencies, but for the most part, you should not be writing prescriptions for controlled substances for you or for your family members.

>>Points of Emphasis

>>Points of Emphasis

55 “When treating themselves or immediate family members, physicians may be inclined to treat problems that are beyond their expertise or training.” [2]

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Case 4 also asks if you would treat a family member with a condition that may be outside your specialty. This case goes beyond with the request for a controlled substance. Will you be able to objectively assess your mother’s risk for abuse, and the possibility of drug seeking behavior? Are you willing to take that role? The AMA Opinion 8.19 states, “Except in emergencies, it is not appropriate for physicians to write prescriptions for controlled substances for themselves or immediate family members (I, II, IV) [2]. Medical licensing boards each have regulations regarding this. It follows that physicians should make sure they review the policies set by their state licensing boards. For instance, Price and McIntyre [11] write that in Rhode Island, “a physician may not prescribe for a non-­therapeutic purpose and there needs to be an adequate medical record justifying the use of the medication… There needs to be documentation of the history, test results, drugs prescribed or administered.” And, if the prescribed medicine is a controlled substance, there are often more requirements. They continue that Rhode Island requires “history and physical examinations, treatment plan and objectives, informed consent, periodic review of plan and treatment, consultations with experts, accurate and complete records, and compliance with State and Federal Laws [11].” Are you willing to provide this adequate documentation? If not, consider that if there is a review, that you may be disciplined. One must always be wary of the potential for abuse and the per-

55 Except in emergencies, it is not appropriate for physicians to write prescriptions for controlled substances for themselves or immediate family members, 55 One must always be wary of the potential for abuse and the perception of abuse when prescribing controlled substances to family members and you must follow state and for that matter, federal DEA laws.

Case 5 brings up many issues involving the treatment of a romantic or sexual partner. First, discussion of the treatment of family members also often includes people close to them; those treated as “family”. The Province of Ontario’s College of Physicians and Surgeons combines guidance in “Physician treatment of self, family members, or others close to them”. In this guidance, family members include those with familial connection and with whom the physician has a personal or close relationship, where the relationship is of such a nature that it would reasonably affect the physician’s professional judgment. This could include the physician’s extended family. This may include friends, colleagues and staff. And, there are additional cautions. “Physicians must be mindful that providing treatment to a spouse, partner, or anyone else with whom they are sexually or romantically involved may give rise to a physician-patient relationship and that providing treatment that exceeds the circumstances set out in this policy may give rise to a physician-patient relationship such that the sexual abuse provisions of the Regulated Health Professions Act, 1991 would apply.” [12]. The Regulated Health Professions Act in Ontario provides

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the framework that covers the scope of practice for the profession and helps provide regulation to protect and serve the public interest. In this case, how would your colleagues (or practice associates) feel about you using “leftover” botulinum toxin product for your girlfriend? Even if you attempt to pay for it, would you unconsciously make sure there was enough left over to ensure that she has the desired outcome? Would there be perception in the office that you are actually treating your girlfriend for free? Would what you do and how much you do be influenced by your relationship with her? What if she pushes you to do more and more laser treatments until she gets the results that she wanted? Could you refuse her knowing it might risk your relationship? Could you say no? What if her obsession caused you to cause an undesirable outcome? Irreversible injury or scar? Would you truly be using nonmaleficence and be able to treat her objectively and safely? What if she turns around and says you did too much and you caused injury and harm trying to make her look better? Others might question you regarding her patient autonomy or right to make choices regarding her own care. You might risk complaint investigation, abuse of patient-physician relationship, and discipline. In addition, it would be very difficult to justify your use of devices after hours and weekends without ensuring your practice is aware and alright with this practice. Are you violating professional courtesy which covers the behavior or etiquette that is between you and your colleagues? Remember if you are in a group practice, where you all share in the overhead of materials and coverage of warranty of devices, you utilizing time, space and equipment for your loved one especially if it is after hours may cause serious grievances or resentment and may not be permitted. What protection is there to the safety of your patient and of your career if something goes

wrong? Treating your partner may not be worth this risk. Remember the guideline, “Physicians must not provide treatment to a spouse, partner, or anyone else with whom they are sexually or romantically involved, beyond the circumstances of a minor condition or emergency, and where no other qualified health-­ care professional is readily available” [12]. Adhering to ethical behavior guidelines may save your medical career and reputation. >>Points of Emphasis “Physicians must not provide treatment to a spouse, partner, or anyone else with whom they are sexually or romantically involved, beyond the circumstances of a minor condition or emergency, and where no other qualified health-care professional is readily available.” [12]

Conclusion Proper training, complete medical evaluation, documentation and sound judgment are required when treating family members. It certainly can be rewarding to help a loved one. But, be prepared to consider whether your role is best as physician or family member. Douglas [8] writes, “Although it may seem impossible to separate ourselves from the physicians we have become, at times it may be more helpful for us to be a good spouse, parent, child, sibling, grandparent, aunt, uncle, niece, nephew, cousin or in-law to the patient rather than a physician.” Fromme et  al. [10] review several personal cases and provide a useful assessment of risk for physicians to consider before they get involved in the care of a family member. . Table 19.1 is adapted from their paper and may help physicians assess their risk of involvement. The higher the risk, the more there is to consider and referral to a qualified physician may be best. Unfortunately, it is not known how being related truly affects the care deliv 

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..      Table 19.1  Low-, medium, high-risk involvement by physicians in the care of a close friend or family member Low risk  

 elping to explain medical information, such as H diagnoses

 

Suggesting the patient should see a physician

 

 nswering questions about whether the patient A should see the physician

 

Answering questions about medications

 

 roviding education, such as how to take care of P a sprained ankle

 

 elping to navigate the health care system (for H example, finding the right physician)

 

Attending medical visits

 

 t medical visits, helping to ask the right A questions and interpret medical jargon

Medium risk  

 uggesting that the patient does not need to S worry about a problem or see a physician

 

 efilling a medication prescribed by the treating R physician 1 time only

 

Suggesting over-the-counter medications

High risk

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 rescribing a medication not being prescribed by P the treating physician

 

Prescribing a controlled substancea or psychoactive medication

 

Ordering tests

 

Checking results

 

Coordinating care

 

 aking decisions without involving the treating M physician or patient

 

Performing a procedure beyond first aid

Adapted from Fromme et al. [10] aInappropriate prescription of controlled substances to family members may result in license suspension and may violate state law

ered between physician and patient. So, you will have to decide on a case by case basis. Before treating family members, consider if you can truly be objective and give them the best care they deserve.

References 1. Geiderman JM, Marco CA, Iserson KV.  Emer gency physician care of family members, friends, colleagues and self. Am J Emerg Med. 2019;37(5):942–6. 2. The American Medical Association Code of ethics, ethics opinion 8.19. 1993. Virtual Mentor. 2012;14(5):396–7. 3. La Puma J, Stocking CB, La Voie D, Darling CA.  When physicians treat members of their own families. Practices in a community hospital. N Engl J Med. 1991;325:1290–4. 4. Freeman J. On the regulatory radar screen! Prescriptions for family and for management of pain. Iowa Med. 2007;97:10. 5. Reagan B, Reagan P, Sinclair A. Common sense and a thick hide. Arch Fam Med. 1994;3:599–604. 6. La Puma J, Priest ER. Is there a doctor in the house? An analysis of the practice of physicians’ treating their own families. JAMA. 1992;267:1810–2. 7. Grushchak S, Grant-Kels J. Sweetheart, you should have that looked at: ethical implications of treating family members. J Am Acad Dermatol. 2019;80: 571–3. 8. Douglas S.  The American medical news. 2009. https://amednews.­c om/article/20090413/profession/304139927/51. Accessed 13 Oct 2019. 9. Dickens B, FIGO Committee for the Ethical Aspects of Human Reproduction and women’s Health. Ethical issues in treating family members and close friends. Int J Gynaecol Obstet. 2016;133:247–8. 10. Fromme EK, Farber NJ, Babbott SF, Pickett ME, Beasley BW. What do you do when your loved one is ill? The line between physician and family member. Ann Intern Med. 2008;149:825–9. 11. Price M, McIntyre BW. Dangers of self-­prescribing and prescribing for family members. Med Health RI. 2007;90:178–81. 12. College of Physicians and Surgeons of Ontario. Physician treatment of self, family members, or others close to them. Available at: https://www.­cpso.­on.­ca/ Physicians/Policies-Guidance/Policies/PhysicianTreatment-of-Self-Family-Members-or. Accessed 10 Nov 2019.

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Healthcare Ethics and Professionalism in Social Media Sophia M. Wolfe, Sophia S. Hu, Chandler W. Rundle, Gil S. Weintraub, and Robert P. Dellavalle Contents Introduction – 186  ffects of Social Media Use on the Patient-Physician RelationE ship – 186 Social Media for Education – 187 The Ethics of Marketing on Social Media – 188 Social Media for Research Recruitment – 190 Licensing and Legal Considerations – 190 Conclusion – 195 References – 196

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_20

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nnLearning Objectives 1. Describe how patient use of social media may alter the patient-­provider dynamic. 2. Describe how social media use by providers may negatively impact the patient-physician relationship. 3. Understand how the Health Insurance Portability and Accountability Act of 1996 applies to social media posts that include patient images and/or cases in order to ensure that posts do not contain protected health information. 4. Describe methods for maintaining patient trust when using social media to disseminate educational content. 5. Understand the role of social media followers, consistency of photos, and transparency regarding conflicts of interest in influencing potential patients in order to ensure transparency in promotional content. 6. Apply ethical and professional standards to real-world scenarios.

Introduction

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The rise of social media has revolutionized the availability of information to the public and the way people communicate with one another. Research estimates that 65% of physicians use social media for professional purposes [1]. In this new paradigm, the physician-patient relationship has become more open, as patients have greater access to information about their conditions from various experts in the field, going beyond the traditional information provided by their physician. Beyond being an educational tool, social media has also become an innovative way to attract patients, advertise dermatology practices, and develop professional reputations among colleagues [2]. For these reasons, it is important to maintain a professional presence online. However, physicians’ social media behavior can negatively affect patient trust, violate patient privacy, risk lawsuits, and impact professional reputations. Without clear and readily enforceable professional guidelines for social media platforms, it is the responsibility of the physicians

using these services to hold themselves and their peers to high ethical standards in order to protect the house of medicine. Given the visual nature of dermatology, social media is particularly well-­ suited for integration into dermatology practice, placing dermatologists on the front lines of these challenges [3].

 ffects of Social Media Use E on the Patient-Physician Relationship Since the emergence of major social media platforms, an increasing number of patients use these technologies for health-related reasons, leading to changes in the patient-­ physician relationship dynamic. Studies show that the use of social media by patients leads to enhanced understanding and greater communication between patients and physicians [4]. Furthermore, patients use social media to complement healthcare services for improved social and informational support [5, 6]. Patient support groups have readily adopted social media to connect with other patients with similar medical challenges in order to promote emotional well-being and self-esteem [6]. Additionally, there is increased sharing of information about diseases, allowing patients to be more literate about the signs, symptoms, tests, and treatments associated with their conditions [4]. Social media has also been shown to affect the patient-physician relationship. Increased access to relevant scientific literature and personal healthcare information empowers patients to be more involved in decision making [4, 5, 7]. It also can create barriers to care, leading patients to perseverate on information that may not be relevant and can challenge the physician’s opinion, undermining the relationship. Despite the potential challenges, a more engaged and health-literate patient population can encourage physicians to be more patient-centered and ultimately improve patient outcomes [8, 9]. Social media is an effective medium for communication and dispersing information. Maintaining a social network helps physicians

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build a patient community, recruit participants to clinical trials, answer patient questions, and share relevant health information [10]. Nevertheless, the integration of social media into healthcare systems demonstrates a unique set of risks. Controversial or negative comments made by individual healthcare professionals on social media can reflect poorly on the provider, her affiliated organization(s), and even the profession as a whole. The distinction between appropriate versus inappropriate content may be obscured if the material, although not violating professional codes of ethics, is subject to misinterpretation. The potential for anonymity when using social media may increase the potential for a loss of discretion when posting online. Despite measures to increase privacy settings, anything posted online risks inappropriate disclosure. Furthermore, posts related to patients risk violating the privacy regulations of the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and thus, violating both federal law and patient trust. Therefore, healthcare professionals must be extremely cautious with the information they choose to share with followers on social media. Additionally, social media use requires engagement with followers, which is time consuming and may distract from patient care responsibilities if done during working hours [10]. Physicians’ activity on social media platforms has a large influence on how patients perceive their providers. A study on the impact of social media on patients’ trust in their physicians showed that patient trust is diminished if the patient believes that their doctor posted racist or disrespectful comments about a patient, a photograph in which he or she was intoxicated, or a comment with profanity. However, the study also found that a physician’s post with a respectful comment about a patient may increase patient trust [11]. Given that trust is a fundamental pillar of patient care, physicians need to be thoughtful about their online presence, as social media posts can have a positive or negative impact on their relationship with patients. Just as patients can use online activity to make judgments about their health care providers, doctors can potentially use their patient’s online presence to gain valuable

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information about their patient. Finding and using information like personal behaviors and dietary habits of patients obtained from sites like personal blogs may be valuable for patient management. However, this form of access to patient information may blur the boundaries between providers and patients, and providers may struggle to identify the information necessary for professional use. Physicians ask for a patient’s permission to access her records, but gathering information from external sources, such as on social media platforms, without expressed consent by the patient may be controversial. Additionally, providers must be cautious in their approach to disclosing such information in patient encounters to avoid jeopardizing the core foundation of trust that characterizes the patient-physician relationship [12]. In summary, establishing an online patient-­ physician relationship carries both potential risk and benefit, which physicians must weigh prior to engaging in with patient’s online. Physicians may share both personal and professional content on their social media pages, which allows patients and physicians to form a community for improving health outcomes; however, this additional exposure may also leave the physician vulnerable to misinterpretation of personal content. Therefore, the increased access to information about a patient or provider afforded by social media platforms requires a mutual trust between patients and providers to preserve patient confidentiality and to maintain the professional boundaries of the patient-provider relationship [12].

Social Media for Education Given that the majority of patients turn to online resources for health information, social media is a natural extension for dermatologists to share information about skin conditions [1]. Research has shown that social media may also be an effective way to initiate health behavior change, including changing sun safety habits, for improved prevention of skin cancer [13]. However, certain ethical and professional standards should be considered when using social media for educational pur-

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poses, including maintenance of patient privacy, use of proper citation, and differentiation between fact and opinion [14, 15]. Protecting patient privacy is a fundamental part of responsible use of social media in medicine. Use of patient cases or images on social media can be helpful in educating both the general population, as well as other providers. However, patient well-being and privacy must be prioritized over educational value [1, 16]. The risk of breaching patient confidentiality in dermatology is unique in that potential identifiers go beyond name and identifying numbers. Patient privacy must also be considered when posting images of patients’ lesions. Unique lesions and tattoos can be considered patient identifiers and should, therefore, also be excluded from shared cases [15]. Another common area of concern in maintaining professionalism on social media is centered on maintaining transparency with patients and the public by indicating the source of information and specifying whether shared information is an opinion. These measures are particularly important for physicians, since information shared by physicians is often considered more trustworthy by patients than other sources of health information. Consumer surveys have found that 60% of social media users trust content from physicians, compared to 54% from advocacy groups, 45% from patients the respondents know, 36% from pharmaceutical companies, and 25% from patients the respondents did not know [3]. Therefore, it is crucial for physician social media accounts to be transparent with the public in regard to sources of information and potential conflicts of interests, as the facts and opinions presented on these accounts may have a greater impact on their audience. Disclosures of conflicts of interests, which are common practice in academia, may be neglected in less formal settings; however, these statements are particularly important on social media, where information about the physician is frequently limited. Social media’s focus on brevity, such as Twitter’s 280-­character limit, and the speed with which information can spread on social media may also lead to

reposts of the dermatologist’s information without the original disclosure. Additionally, the physician’s content may be mixed with ideas of the person sharing the information. Despite the difficulty of including disclosures, dermatologists have a professional and ethical obligation to include such statements in order to maintain the public’s trust [3]. One way to ensure disclosures remain with content as information is dispersed throughout social media platforms may be to embed statements directly onto photographs to prevent disclosures from being separated from the content when posts are shared. The anonymity and brevity of social media may also lead to poorer quality of information provided for educational purposes. By excluding authorship of posted medical information, or citations of the source of the information, educational posts may be misleading. While the informal and concise nature of social media allows dermatologists to reach more people and interact with their audience, it could also compromise accountability and accuracy of information. When coupled with the fact that content from medical professionals, even anonymous physicians, is more trusted by the public than that from non-­ physicians, incomplete content can have a significant impact on readers, possibly causing harm [1].

 he Ethics of Marketing on Social T Media Social media can be an effective marketing tool for dermatologists. When used productively, online platforms can offer a multitude of benefits, including building company or brand loyalty, creating positive word-of-­ mouth opportunities, recruiting new patients, strengthening ties to existing patients, becoming a trusted source for medical information, protecting one’s online reputation, and developing professional relationships [17]. Importantly, social media provides an avenue to increase patient volume for practices through both advertisements and wordof-­mouth marketing. A survey of 150 patients

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attending their initial visit to a single cosmetic center demonstrated that social media was significantly more influential than broadcasting or print advertisements in getting patients to the clinic after controlling for exposure rates [17]. Additionally, some dermatologists estimated that over one-third of their referrals originate from online social media platforms [17]. Unlike traditional broadcast methods of marketing, sharing blog posts, tweets, “pins,” and status updates helps physicians continuously market their practices and selectively control their reputations, refining the way they would like to be perceived by the public. Private medical practices often maintain their own websites, continually update blogs, and provide links to Facebook/Instagram ­ professional pages, Twitter accounts, YouTube videos, and/or Pinterest boards [2]. Facebook is an effective marketing tool, given the ability of practices to maintain a professional page with basic information (such as office hours and location) and links to brand-specific Web pages. Interactive features that allow for the sharing of newsworthy content, “status updates,” and answering patient questions can also be included. Patient feedback posted on Facebook was demonstrated to be a practical source of quality improvement information for dermatologists [18]. With the ability to provide “comments” in a two-way communication route, physicians can potentially influence conversations and address concerns from patients, which helps to improve and maintain brand image on social media [15]. While comment sections may be helpful for branding and patient communication, it also risks creating a public platform to spread false or misleading statements. Inflated or fake comments may sway patients towards unnecessary products and procedures, give patients false hope, or set unreasonable expectations. Furthermore, patients may use the number of followers or “likes” a physician has as a marker for quality or patient satisfaction, not realizing these can be purchased or exchanged for services. Therefore, gaining an audience through these methods may further mislead patients, and providers should use

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caution about using ratings and the number of followers as a sole measure of their quality as a physician [19]. Social media is a particularly efficacious marketing tool in aesthetic dermatology. Given the highly visual nature of the conditions, posting before-after photos on online platforms gives potential clients the ability to gauge the outcomes and quality of the procedures, which may influence their decision to see a provider. Aesthetic dermatology advertisements are often found in magazines (42%), television (21%), or social media sites (20%) [17]. Controlling for advertisement exposure, social media marketing was found to be significantly more influential in a patient’s decision to undergo a cosmetic procedure [17]. Nevertheless, photographs used for marketing purposes also pose a risk of giving false expectations. Lighting, posing, makeup, and even digital alterations play an important role in how people appear in photographs, which can have implications when providers use before-­ and-­ after images to promote their services. When these characteristics are not kept constant in both the before and after photograph, differences in the patient displayed by the image may not only be due to the procedure [20]. Therefore, it would be helpful for physicians to use standardized techniques across images to reduce the risk of misleading beforeand-after photographs. Conflicts of interest have an even greater potential to arise when using social media for marketing purposes. Dermatologists must be careful to ensure that they are remaining objective in their content and fully disclosing relationships with promoters and products, which may be a challenge when presenting one’s own practice or product. Physicians have a fiduciary duty to place the interest of the patient over their own, particularly when considering medications, products, and procedures, which may conflict with standard marketing practices. Younger people in particular are more impressionable than older generations and are more likely to change their attitudes and behaviors as a result of external influence. Since certain marketing tactics that emphasize beauty may have a more profound effect on social media, where a larger portion

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of the audience consists of a younger population, the target audience may be more vulnerable [21]. Furthermore, physicians must maintain a professional image, ensuring the appropriateness of posted content and that only HIPAA-compliant patient information is used. While social media is a powerful marketing tool for dermatologists, it can also inappropriately raise patients’ expectations for treatment outcomes. This aspect of social media puts a greater responsibility on physicians to ensure that their marketing content is truthful and not overstated to prevent patients from being misled [19].

 ocial Media for Research S Recruitment

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Social media may also provide an innovative modality for recruiting participants for dermatologic research studies. Social media allows investigators to more efficiently recruit subjects by using targeted advertisements focused on groups that are more likely to fit eligibility criteria based on their demographics or online activity. This increased efficiency can increase total enrollment or shorten the timeline for research projects. However, many of the previously discussed ethical considerations, such as maintaining participant privacy and autonomy, must also be taken into account in this context, as many IRBs lack guidelines for recruitment on these platforms [22]. One of the largest potential ethical issues with this mode of recruitment is respecting the privacy of potential subjects. Social media use increases the accessibility to participants’ personal information, but subjects typically do not share this information for public purposes outside their circle of followers. Similarly, many social media users are unaware of the extent of their privacy settings and may post information that is not intended for researchers. This gap leads to questions of what information is appropriate for research use, as some posted information may embarrass participants if used for these purposes. In order to ensure that participants are pro-

tected, investigators should obtain consent from subjects prior to gathering and disseminating personal information, even if that information has already been posted to a “public” platform [22]. Furthermore, many potential participants do not expect researchers to be using social media as a mode of recruitment. Therefore, investigators should clearly state their role and the goals of the study in order to uphold participant autonomy [22].

Licensing and Legal Considerations Aside from the ethical obligations previously discussed, upholding professional standards on social media can also ensure safety for physicians and patients. Medical licensing boards have the authority to discipline dermatologists for unprofessional behavior on social media, including failing to maintain patient privacy and using misleading authorship and credentials. Physicians should be conscious of these risks when providing advice to patients and the public more broadly on social media [1]. The unsecure nature of the platform may leave physicians vulnerable to lawsuits that arise from providing inaccurate medical advice or breaching patient confidentiality [1, 21]. While general medical advice may be appropriate content to share on social media platforms, advice that is specific to an individual case should not be shared on a platform where information is rapidly and broadly distributed [21]. Medical questions sent on social media can best be dealt with by providing a clinician’s contact information so that the inquirer can set up an appointment or by having the patient sign an informed consent document before discussing medical concerns on social media [1]. >>Points of Emphasis 55 While social media may foster a community of providers and patients to facilitate health behavior change, the medium also increases the amount of publicly available information about both patients and physicians, which can have unintended consequences.

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55 Respecting patient confidentiality and adhering to HIPAA also extends to images and cases published on social media platforms, which includes but is not limited to covering patients’ eyes and cropping out unique lesions and tattoos. 55 Include authorship and citations of content to maintain transparency, as well as adequate disclosures of conflicts of interest. 55 Protect patients from developing false expectations of treatment results by

growing one’s following organically without paying for followers, standardizing before-and-­after procedure images, and disclosing financial relationships with influencers that may be used to promote services. 55 Avoid providing patient-specific medical advice through social media, as this may infringe upon patient privacy. 55 Ensure that status as a researcher is clear when using social media for subject recruitment.

Case Scenarios

Case 1

Case 3

A young woman presents to her dermatologist for worsening facial hyperpigmentation. She complains of irregular brown pigmentation on her face in sun exposed areas. Her dermatologist prescribes her 4% hydroquinone for melasma. The patient is later reading about melasma on Facebook and is linked to several research articles highlighting the risk of ochronosis with hydroquinone use. She brings up her safety concerns with her dermatologist, who reassures her that the risk is minimal with short-term use. Yet, the patient remains unsure of her treatment plan.

A dermatologist manages a social media account to educate the public on skin disorders using patient cases seen in her clinic. She wants to post a patient case for “Melanoma Monday” to raise skin cancer awareness and increase adherence to sun safety measures. She receives consent from a patient with melanoma on the back to use a photograph of the lesion. The photo of the lesion is taken and also shows part of the patient’s tattoo. The dermatologist is concerned as to whether or not she can post the case and photograph to her social media account.

Case 2 A woman looking for anti-wrinkle treatments finds the professional page of a local aesthetic dermatologist on Instagram. There are before-andafter photos of her cosmetic patients, showing a variety of laser treatments, as well as neurotoxin and hyaluronic injections. She notices the name of the dermatologist is hyperlinked in the hashtag section and clicks on it. She is brought to the dermatologist’s personal Instagram account, where she finds a series of unflattering photos of the dermatologist intoxicated and partying. The woman feels uncomfortable with this doctor’s judgment and decides to look elsewhere for treatment.

Case 4 A pharmaceutical company hires a dermatologist to help develop a new topical medication for acne. The dermatologist finds the product to be effective in helping his patients reduce their acne. The company also begins to manufacture an oral medication for acne, which the dermatologist also finds to be effective in most of his patients. He wants to promote the oral medication on his practice’s Facebook page. Can he ethically endorse the product on his professional page given his history of working with the company?

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Case 5 A dermatologist has his own skin care brand, which he markets on multiple social media platforms. The line of products is instrumental in maintaining the identity and popularity of his clinical practice. However, he discovers that one of the ingredients has recently been identified as a potential human carcinogen. He is afraid that recalling the product will decrease his marketability and ability to recruit new clients. Case 6 A dermatologist is starting a private practice. He markets his practice on websites like Facebook and Instagram using phrases like “This world-class clinic is the only place for a

cure for your condition,” and “Our clinic provides better care at a lower price than any other….” Case 7 A dermatologist is an active Reddit user and regularly posts in medical forums. He often provides his opinion and medical advice on forums for patients. However, he consistently fails to disclose his position as a board-certified dermatologist. After 1 year of providing anonymous advice, he receives a personal message from a user recently diagnosed with melanoma. Previously, he had advised the user that he did not need to seek medical consultation. Out of fear of medico-legal risk, he immediately deletes the comment and his Reddit account.

Case Analysis

Case 1

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This case scenario illustrates the effects of social media on the patient-physician relationship, specifically the wide availability of health information often found on social media and the shifts in power differentials due to patients gaining knowledge about their condition. Patients often utilize social media to better understand their health conditions and treatment options. Given the time constraints during patient visits, many patients have unmet needs (including concerns about side effects as in this case) that may be available, albeit potentially misconstrued, on social media. With increased accessibility of medical knowledge, patients are able to better comprehend their health condition, make informed decisions for themselves, and communicate with their physicians. It is important for providers to recognize and validate patient concerns and knowledge, even if they disagree. This will allow for a stronger therapeutic alliance and allow patients to feel heard and involved in the decision making process. Despite best efforts, there may still ultimately be conflict when providers do not agree with the outside sources of

information that patients provide, and it is the patient’s prerogative to seek other medical opinions if they are not satisfied. Case 2 This case illustrates the importance of professionalism on social media. Physicians should take care to ensure that only professional content of themselves is publicly available on social media. Even with the implementation of privacy settings, social media platforms are public domains with ever changing privacy policies that risk exposing private content. The dermatologist should link his or her social media accounts to professional, not personal pages. Patients expect a high level of professionalism from physicians, and healthcare professionals must anticipate the potential consequences of posting their personal photos on a social media platform. Images of physicians not appearing professional erodes patient trust. Without care taken in this process, controversial or negative content posted by healthcare professionals can reflect poorly on the individual and the organization with which the provider is affiliated.

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Case 3

Case 4

This case highlights a couple of issues dermatologists may face when creating educational content for social media including consent and protecting patient privacy. The dermatologist asked for patient consent prior to posting the case online [15]. While there is some debate as to whether or not obtaining consent from a patient is necessary, this measure can ensure that the physician maintains the trust of the patient and protects their autonomy and privacy [1, 15]. Not only does obtaining consent before using a de-identified case protect the physician from a possible lawsuit, but it also upholds the patient’s autonomy and right to control the use of images of his body, in addition to professional standards of the medical profession [15]. However, whether or not a physician receives consent prior to posting a deidentified case is up to the discretion of the practitioner [1]. Regardless of whether consent is obtained, protection of patient privacy must be maintained. This measure encompasses removal of identifying information from the case, including but not limited to patient name, medical record number, social security number, age, location encompassing less than 20,000 inhabitants, and dates of clinic visits/admission and discharge [15]. In dermatology, photographs are frequently helpful in education. Photographs may be considered de-identified as long as the patient is not recognizable in the image, which would include not using full-face images and cropping photographs to remove tattoos, birthmarks, or other unique lesions/features [15]. Thus, the dermatologist could post the case, as long as she crops out the patient’s tattoo, as well as any other recognizable features, and does not include other patient identifiers in the case description.

In case 4, the provider has a financial relationship with the company, but this relationship does not extend beyond one product; however, there may be potential bias because the dermatologist had previously worked with the company. In order to avoid misleading his patients, the dermatologist should disclose his ties to the company if he chooses to endorse the medication, even if he will not be receiving direct financial gains from promoting the product. This disclosure will allow patients to make an informed decision when evaluating the physician’s statements made about the medication, maintaining the trust between the patients and the dermatologist [3]. Aside from simply disclosing conflicts of interest, managing these conflicts should also be considered. The dermatologist in the case is correctly concerned about promoting any of the company’s products on his professional social media pages. Social media reaches a larger audience, and disclosing conflicts of interest may not be s­ufficient to prevent the public from making decisions based on a potentially biased claim. While not universally agreed upon, some recommendations suggest that the dermatologist should avoid discussion of any of the company’s products on professional social media accounts, regardless of the inclusion of a disclosure statement. While eliminating conflicts should be considered, there is no definitive consensus on the sufficiency of a conflict-of-­interest disclosure and no guidelines on when removing or resolving conflicts are necessary [3]. Therefore, if the dermatologist decides to endorse the medication, he should fully disclose his relationship with the company on any posts that include his promotion; however, his decision to recommend this product, as well as any other product from this company, is solely his

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discretion. As long as the potential to harm the public with the endorsement of the medication is very low, he could reasonably discuss the product with adequate disclosure. Case 5 This case scenario illustrates a conflict between the marketing interests of the dermatologist and potentially putting patients’ health at risk. The advertisement of the skin care brand on social media helps maintain a positive public image of the practice, sustains a loyal patient base, increases patient recruitment, and advertises a unique and customizable image of the practice on multiple social media platforms. All of these factors have greatly contributed to the success of the practice and have implications for its future growth. Given the extensive brand recognition and popularity of the skin products, the dermatologist fears that recalling the flawed or potentially unsafe product will diminish the marketability of his practice and have negative implications for his reputation and credibility. On the other hand, if the dermatologist chooses not to address the issues in his skincare products, he risks potentially harming his patients if they experience the health-­related effects of the defective products. This can be even more detrimental to his reputation in the long term and could have potentially serious legal consequences. Dissatisfied patients may also write bad reviews on social media sites, impairing the credibility of his practice and questioning the dermatologist’s morality. A large component of marketing in healthcare is to establish oneself as a trusted and knowledgeable provider with high standards for patient-centered care. Building and maintaining trust with patients is essential in sustaining long-term relationships and recruiting new patients. Any breaches of trust in the patient-physician relationship or evidence

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of dishonest behavior on the part of the provider may be significantly harmful to the provider’s career, negating the efforts put into marketing. Thus, in this case, it would be the most appropriate to reveal the defects in the skin-care products to patients. Case 6 This case illustrates the ethics of communications used in advertisements for physicians. Marketing for medical practices must be truthful and not misleading or deceptive. All claims must, therefore, be accurate and not create false impressions or unjustified expectations. Terms like “top,” “world-­class,” or even “outstanding” may be misleading and intended to attract vulnerable patients. These statements are usually not substantiated by factual data, and if terms like these are used, the advertisement must disclose how the rankings were established. Physicians must also be cautious when claiming a procedure will provide a desired outcome. Some procedures may have little evidence base to prove their value or use in accepted practice. Furthermore, the success rate of such procedures varies based on the unique characteristics of the patient, such as age, gender, and comorbidities. Generalizations rarely reflect the diversity in patient characteristics and procedural outcomes. Advertisements claiming that physicians or a group of physicians offer a unique skill set should not be used unless it has been determined that the physician is indeed the only healthcare professional in the area that exclusively provides such services. Finally, marketing targeted at downplaying other physicians or medical practices is unethical [23]. Creating objective and truthful advertisements of physicians and their medical practices can be difficult even with the best intentions. Thus, physicians must be extremely careful with the content in their marketing.

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Case 7 Unlike Facebook or Instagram, Reddit is a platform that utilizes anonymous accounts for the posting of content and commentary. In general, physicians have a responsibility to provide the best medical care possible while simultaneously protecting the patient from harm or breaches in privacy. His advice caused a delay in a melanoma diagnosis, potentially causing the patient unnecessary and/or significant harm. Regardless of the dermatologist’s thoughts about the lesion, he should have

>>Points of Emphasis 55 Physician opinion carries great weight, even in the context of social media. Therefore, it is essential that physicians maintain professional and ethical content on both their professional and personal accounts. 55 Protected health information goes beyond patient name and medical record number to also include age, location encompassing less than 20,000 inhabitants, and dates of clinic visits. 55 Not only is disclosure of conflicts of interest necessary when promoting products or services in the social media sphere, but physicians should also attempt to minimize these conflicts. 55 Avoid using hyperbolic statements when marketing practices online to prevent patients from being misled. 55 The anonymity afforded by social media platforms may lead to providers giving potentially harmful medical advice. Therefore, it is best to refer patients to a physician rather than give individualspecific medical advice online.

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directed the patient to schedule an appointment with a physician to obtain a biopsy of the lesion. However, provided the anonymity in this situation, the dermatologist will likely not face legal repercussions. Furthermore, there are no barriers preventing the dermatologist from creating another anonymous account and continuing to provide medical advice without stating his role as a dermatologist or providing disclaimers. In general, dermatologists should refrain from providing medical advice on social media sites.

Conclusion Social media use in dermatology has grown substantially in recent years and will likely continue to grow. The growth of social media in dermatology has led to several positive results for both patients and physicians, including increased dissemination of evidence-­ based medical knowledge, patient engagement, and physician collaboration. With its growth, however, there is an increased risk of HIPAA violation, decline in the quality of the patient-physician relationship, and the propagation of misleading information. Thus, it is necessary to have clear guidelines for physician social media use to protect both physicians and patients (such as those summarized in . Table  20.1). While there are inherent ethical considerations, social media still provides an opportunity for healthcare providers to significantly contribute to public health and dermatology education efforts to better serve the dermatologic patient population. Furthermore, social media provides an effective means to increase the marketability of dermatologists, given efforts are done in an honest and tasteful manner. Therefore, physi 

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..      Table 20.1  General ethical and professional guidelines for social media Context

Approach

Relationships with Patients

Maintain a professional relationship with patients both on- and offline Consider creating different social media accounts for personal and professional use [24] Consider not accepting patient “friend” or “follow” requests on personal accounts [10]

Patient Privacy

Avoid posting information that would allow a patient to be identified (including protected health information) Receive patient consent prior to sharing the patient’s case Crop images to avoid displaying a patient’s unique lesions, tattoos, or birthmarks [15]

Conflicts of Interest

Disclose all conflicts of interest Consider eliminating conflicts by avoiding certain topics, if necessary [3]

Quality of Information

Post accurate information and cite its source [1]

Marketing

Keep the patient’s well-being in mind when deciding how to market practices or products Marketing claims should be accurate and include disclosures, if necessary [21, 23]

Medical Integrity

Avoid giving patient-specific medical advice on social media [21] Ensure statements of credentialing are accurate [1] Hold other physicians accountable for unprofessional content Keep in mind that posted content is a reflection of the profession and can result in legal action/damage to reputation [24]

cians must be mindful when posting online, remembering to uphold the standards of the medical profession, remain transparent, and protect patients, in order to maximize the benefit of the platform.

References

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1. Ventola CL.  Social media and health care professionals: benefits, risks, and best practices. Pharm Ther. 2014;39(7):491–520. Available at https://www. ncbi.nlm.nih.gov/pmc/articles/PMC4103576/. Accessed 3 Dec 2019. 2. Benabio J.  The value of social media for dermatologists. Cutis. 2013;91:269–70. 3. Decamp M. Physicians, social media, and conflict of interest. J Gen Intern Med. 2013;28:299–303.

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Smailhodzic E, Hooijsma W, Boonstra A, Langley DJ.  Social media use in healthcare: a systematic review of effects on patients and on their relationship with healthcare professionals. BMC Health Serv Res. 2016;16:442. Available at https://www.­ ncbi.­n lm.­n ih.­g ov/pmc/articles/PMC5000484/. Accessed 3 Dec 2019. 5. Colineau N, Paris C. Talking about your health to strangers: understanding the use of online social networks by patients. New Rev Hypermedia Multimedia. 2010;16:141–60. https://doi.org/10.10 80/13614568.2010.496131. 6. Schaefer C, Coyne JC, Lazarus RS.  The healthrelated functions of social support. J Behav Med. 1981;4:381–406. 7. Feste C, Anderson RM. Empowerment: from philosophy to practice. Patient Educ Couns. 1995;26:139–44. 8. Rupert DJ, Moultrie RR, Read JG, Amoozegar JB, Bornkessel AS, O’Donoghue AC, et  al.

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Perceived healthcare provider reactions to patient and caregiver use of online health communities. Patient Educ Couns. 2014;96:320–6. Holmstrom I, Roing M.  The relation between patient-centeredness and patient empowerment: a discussion on concepts. Patient Educ Couns. 2010;79:167–72. Desai DG, Ndukwu JO, Mitchell JP. Social media in health care: how close is too close? Health Care Manag (Frederick). 2015;34:225–33. Fatollahi JJ, Colbert JA, Agarwal P, Lee JL, Lehmann EY, Yuan N, et al. The impact of physician social media behavior on patient trust. AJOB Empir Bioeth. 2019:1–6. https://doi.org/10.1080/2 3294515.2019.1678533. [Epub ahead of print]. Denecke K, Bamidis P, Bond C, Gabarron E, Househ M, Lau AYS, et al. Ethical issues of social media usage in healthcare. Yearb Med Inform. 2015;10:137–47. Available at https://www.­ncbi.­ nlm.­nih.­gov/pmc/articles/PMC4587037/. Accessed 28 Sept 2019. Falzone AE, Brindis CD, Chren MM, Junn A, Pagoto S, Wehner M, et al. Teens, tweets, and tanning beds: rethinking the use of social media for skin cancer prevention. Am J Prev Med. 2017;53(3s1):S86–s94. Vance K, Howe W, Dellavalle RP. Social internet sites as a source of public health information. Dermatol Clin. 2009;27:133–6. DeBord LC, Patel V, Braun TL, Dao H Jr. Social media in dermatology: clinical relevance, academic value, and trends across platforms. J Dermatol Treat. 2018;30:511–8.

16. Avasthi A, Ghosh A, Sarkar S, Grover S. Ethics in medical research: general principles with special reference to psychiatry research. Indian J Psychiatry. 2013;55:86–91. 17. Ross NA, Todd Q, Saedi N. Patient seeking behaviors and online personas: social media’s role in cosmetic dermatology. Dermatol Surg. 2015;41:269–76. 18. Cao S, Smith GP.  Bringing big data from social media reviews to quality improvement. J Am Acad Dermatol. 2018;79:951–2. 19. Schoenbrunner A, Gosman A, Bajaj AK.  Framework for the creation of ethical and professional social media content. Plast Reconstr Surg. 2019;144:118e–25e. 20. Nayak LM, Linkov G. Social media marketing in facial plastic surgery: what has worked? Facial Plast Surg Clin North Am. 2019;27:373–7. 21. Zhou J, Bercovitch L.  Instagram and the dermatologist: an ethical analysis. J Am Acad ­ Dermatol. 2018;78:1226–8. 22. Gelinas L, Pierce R, Winkler S, Cohen GI, Lynch HF, Bierer BE.  Using social media as a research recruitment tool: ethical issues and recommendations. AJOB. 2017;17:3–14. 23. ACOG Committee Opinion No. 510: ethical ways for physicians to market a practice. Obstet Gynecol. 2011;118:1195–97. 24. AMA code of medical ethics opinions on consent, communication & decision making: American Medical Association. 2016. Available at https:// www.­a ma-assn.­o rg/delivering-care/ethics/electronic-communication-patients.

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Workplace Romance in Dermatology Steven Madsen, Lionel Bercovitch, and Jane M. Grant-Kels Contents Introduction – 200 The Pros and Cons of Workplace Romance – 200 Workplace Romance that Crosses the Line – 201  pecific Considerations for the Dermatology S Department – 202  valuating and Managing Conflicts of Interest Arising E from Workplace Romance – 203 Summary – 208 References – 208

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_21

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nnLearning Objectives 1. To understand the evolution of workplace romance and its current place in the present culture. 2. To recognize the unique considerations of workplace romance within a dermatology department or any academic department or medical office. 3. To be able to identify conflicts of interest that arise from workplace romance within an academic department. 4. To be able to understand and apply ethical principles to various workplace romance scenarios in order to manage the associated potential conflicts of interest.

Introduction Workplace romance (WR) is defined as any type of amorous relationship that occurs between people who work together. This definition is influenced by varied personal, cultural, and corporate considerations regarding what constitutes a “relationship.” Is there a point at which flirting crosses the line into relationship? Is there considered to be a relationship between coworkers who share a similar sexual preference and have a deep emotional connection? Though there are many potential permutations of WR, each with unique ethical implications, for the purposes of this chapter we will limit the discussion to any relationship which has an element of physical intimacy. This does not imply that there is any significant commitment or exclusivity in the relationship. Workplace relationship must also be distinguished from the “Me-Too” issue of persons in powerful positions forcing workers in less powerful positions into a sexual relationship. Finally, it is important to distinguish workplace romance from physician-patient romance, which raises serious boundary and ethical issues, and is outside the scope of this chapter. Workplace Romance Any amorous relationship involving physical intimacy occurring between coworkers.

Opinions about WR have undergone a major shift in recent years. The topic attracted public interest when thousands of women entered the American workforce during World War II. Wokrplace romance was initially met with near universal disapproval, and was often subject to corporate disciplinary action [1]. Over the years, public and corporate opinion on the subject has swung dramatically to a more “hands-off ” approach [2]. Some companies, including Southwest Airlines and AT&T have gone so far as to encourage WR [3]. Portrayal of WR in popular culture (think “The Office” or “Grey’s Anatomy”), high profile executives finding themselves on the wrong end of WR controversies (think World Bank or Boeing) and the recent push for gender equality in the workplace have resulted in WR receiving significant attention from scholars in management, law, sociology, psychology and economics in the last decade. As such, emerging data on public opinions and the effects of WR on a company’s bottom line are reshaping the conversation to be more favorable toward WR. In this chapter we will weigh the benefits and risks of WR for all affected parties. As conflicts of interest (COIs) are perhaps the chief ethical predicament that WR creates, an analysis of COIs is paramount to any discussion of WR. Herein, we will discuss the particular concerns relating to WR within a dermatology department. Subsequently, as there are numerous potential variations of WR, we propose a framework for evaluating and mitigating COIs when WR arises within a dermatology department. We will conclude by utilizing this framework to evaluate several case scenarios in which WR impacts a dermatology department or practice.

 he Pros and Cons of Workplace T Romance Workplace romance can have many potential benefits for not only the involved partners, but for the workplace as a whole. As the average American work week lengthens, having a

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meaningful relationship at work can improve work-life balance. Freedom to pursue a meaningful relationship at work may encourage collegiality in the workplace and improve an individual’s sense of autonomy and individuality. Some suggest that employee retention is improved by workplace romance [4]. There are some data to support the contention that WR leads to more meaningful and lasting personal relationships. Studies suggest that 25–50% of WRs result in marriage, with many more resulting in long-term relationships [5]. One showed that there was a 50% lower divorce rate for marriages in which the spouses worked together [6]. These arguments are cited by proponents of WR as a beneficial practice for both the individual and society. There are, however, many demonstrable ethical and logistical risks when coworkers become amorously involved. For example, there is a risk to both individuals and employers that if a WR ends, one party will be ­subject to harassment from the offended party or even other coworkers. As a result, many companies have policies and disclosure agreements in place to protect the company from culpability in such circumstances. Company policies regarding WR are mostly centered on protecting themselves from litigation in the event that an involved party claims harassment [3]. Some feminist scholars even view the option of amorous relationships among coworkers as potentially threatening to the entire female workforce [7]. The chief ethical concern raised by WR is the accompanying potential conflicts of interest that arise from a myriad of sources and can require complex mitigation strategies to best protect all of the stakeholders.

Key Point The major ethical concern associated with WR is conflicts of interest. Mitigating conflicts of interest and ensuring the greatest benefit to the greatest number of people is paramount.

 orkplace Romance that Crosses W the Line When does a WR cross the line into inappropriate or unacceptable? The answer to this question lies largely in the values of the stakeholders; however, some situations would be seen almost unanimously as inappropriate. Is the relationship consensual? Extreme power imbalance or asymmetry in a relationship may cause one partner to feel forced to capitulate to their superior’s advances. Even if the relationship began as consensual, one partner may feel powerless to end the relationship if doing so would be detrimental to their career. Some authorities postulate that consent in a WR is dubious at best [8]. Though the topic of consent in a relationship is complex and beyond the scope of this chapter, it suffices to say that a non-consensual WR is unethical. Another example of inappropriateness in a WR is public displays of affection (PDA). While it is generally accepted that PDA in the workplace is inappropriate, defining PDA can be nuanced and elusive. In general, if PDA in the workplace makes another worker uncomfortable, it should be considered inappropriate, unethical, and therefore, prohibited. A final example of unethical WR is one that directly violates departmental or institutional policy. Many academic departments or offices have explicit rules or requirements regulating whether WR is allowed. These policies may reflect the specifics of the hierarchy in an academic department, i.e. relationships between students and residents or residents and faculty. Below is an example from the University of California (UC) San Diego which expressly forbids such relationships. While it may be argued that such regulations are themselves unethical, it is also clear that violation of rules by which one has agreed to abide constitutes unethical behavior. UC San Diego Policy and Procedure Manual “Relationships between an instructor (meaning all who teach at UCSD - faculty

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Since scheduling, responsibility assignments, and administrative delegation occur largely by immediate superiors within the department, there is substantial potential for favoritism with far-reaching impact and resentment. The situation is further complicated in an academic department that trains residents. The trainer-trainee relationship holds a sacrosanct place in medicine, enabling the conferral of knowledge and experience from more senior to more junior physicians. How might that relationship be changed if the trainer and trainee are amorously involved? Might there be a collateral effect on that trainer’s relationships with other trainees in the department? The nuances of the relationship between trainer and trainee are many, and may be easThe above scenarios are contrasted by the ily disturbed by WR.  Principally, how might more common WR setting, in which WR is evaluation or grading be affected? As most ethically acceptable as long as COIs are appro- trainees (and increasingly, their trainers) are priately declared and managed. The r­ emainder being evaluated frequently, WR may interfere of this chapter will present a framework for with objectivity in the evaluation process. The evaluating WR with the goal of discerning skewed evaluations have implications for other trainees, and the department as a whole. and mitigating resultant COIs. Medical students represent added complexity within the hierarchical system. Beyond the inviolable nature of the trainer-trainee Specific Considerations relationship, there is particular respect for the for the Dermatology Department role of full-time learner. Many departments treat medical students as being outside of the Any academic department, and specifically, a hierarchy entirely. Others, unfortunately, may dermatology department has a well-defined consider medical students to be a nuisance, hierarchy designed to ensure that those with and department culture may place them as the most senior administrative or educational lowest on the hierarchy ladder. Many instituroles are most responsible for patient well-­ tions protect medical students (and thembeing as well as for assessment of those who selves) by enforcing policies aimed at Title IX are considered more junior (students, resi- compliance. While a medical student dating a dents and junior faculty). In many work- resident may not in itself be a Title IX violaplaces, convoluted titles and complex systems tion, the potential to run afoul of Title IX of seniority may obfuscate the hierarchy, must be considered whenever a WR involves a whereas in a dermatology department the medical student. pecking order is more defined and understood by all employees. This hierarchy is not limited Title IX to physicians; office staff, medical assistants, “No person in the United States shall, on nurses and physician extenders are subject to the basis of sex, be excluded from the hierarchical nature as well. participation in, be denied the benefits of, Any time a WR involves partners at dispaor be subjected to discrimination under any rate levels of authority within the workplace, education program or activity receiving conflicts of interest occur. Real or perceived federal financial assistance.” [8] benefits to the lower-ranking partner can breed hostility or resentment from coworkers. members and others who have instructional duties, including residents and graduate or undergraduate students with teaching, advising, or tutorial responsibilities) and a student (meaning any person studying with or receiving advising from the instructor, including interns) may also be covered by UC Academic Personnel Manual (APM) 015, Faculty Code of Conduct, which states that it is misconduct to enter “a romantic or sexual relationship with any student for whom a faculty member has, or should reasonably expect to have in the future, academic responsibility (instructional, evaluative, or supervisory).” [9]

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The residency and fellowship match programs introduce potential COIs to WR in the dermatology department. The yearly process of selecting future residents and fellows can be under intense scrutiny even in the absence of WR.  Favoritism or other advantages imparted by a WR may impact co-residents or medical students; the implications for fairness to other applicants from other institutions gives a WR potentially greater impact when applicants for residency or fellowship are involved.

55 55

Key Conflict of Interest in a Dermatology Department 55 Favorable assignment of duties or responsibilities 55 Preferential mentoring or training attention 55 Favorable evaluations or grading of performance 55 Consideration for advancement within the department 55 Preferential consideration for participants in the Match

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 valuating and Managing Conflicts E of Interest Arising from Workplace Romance Given that there are numerous permutations of WR, each with unique consequences, we propose a list of questions that can aid in discovering and delineating COIs that arise from WR. 55 Question 1: Who are the involved partners and other stakeholders in the WR? Identify the partners in the relationship with respect to their positions within the department. Are the partners residents, faculty, support staff or some combination? Who are the parties affected by the relationship? It may also be helpful to list those parties in order of most to least impacted by the WR. 55 Question 2: If possible, identify the nature of their relationship without infringing on their privacy.

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The level to which the partners are committed has implications for COIs. More committed relationships have greater potential for COI. This subject must be handled with tact, as the details of the WR are sensitive and private, and not appropriate for interoffice discussion. Question 3: Does this relationship violate institutional or departmental policies? Though it is not within the power of an institution or department to dictate its members’ personal lives, such policies may exist to protect the employer from liability arising out of WR. Violation of these policies may lead to further ethical complications for the romantically involved individuals. If there is an institutional policy in place that addresses WR, guidelines should be followed wherever possible. If institutional policy does not address WR, the burden of COI mitigation lies more fully on the partners and their supervisors. Question 4: Are the partners at equal or disparate rungs on the hierarchy ladder? This is the pivotal question in the evaluation of COI.  Partners of equal authority within the department (or in different divisions or departments of the institution) have less ability to influence each other and other members of the department. It is generally easier to avoid situations like scheduling authority, favorable evaluations, or influence on promotions when neither partner has greater influence than the other. If, however, the partners have disparate authority within the department, particularly if one supervises the other, COIs exist. All assignment of responsibilities by one partner to the other must be eliminated. Additionally, evaluations, whether formal or informal, should not be performed by either partner regarding the other. Question 5: What are the specific potential collateral consequences of the relationship on other members of the department? Can one partner receive preferential scheduling, assignments, promotions, or Match considerations that will negatively impact other members of the department? Does the WR make other members of the department uncomfortable? Are both members of the relationship conducting themselves in a professional manner in the workplace? Is there concern about how the WR will reflect on the department as a whole? It is important to

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remember that WR can also have an influence on coworkers. Do other people in the department feel empowered to exercise their own autonomy as a result of the WR? Is there greater or lesser collegiality within the department as a result of the fact that the line between work and personal life has been blurred? 55 Question 6: Does the potential benefit to the partners outweigh the potential detriment to the department? After delineating the COIs that can potentially arise from a certain WR, it is then possible to weigh the benefits and harms. As harms are reduced by working with the partners to ensure minimal impact on coworkers, the utilitarian principle of ensuring the greatest amount of benefit for the largest number of people can be applied. 55 Question 7: How can COIs be managed to best ensure the welfare of the partners involved and the department as a whole? This step may be taken by a supervisor, HR representative, or the partners themselves. It is best to create a specific plan that considers the perspectives and values of all stakeholders, and then work with those stakeholders to come up with a fair and acceptable solution.

Questions for evaluating and mitigating WR related COI 1. Who are the involved partners and other stakeholders in the WR? 2. If possible, identify the nature of their relationship without infringing on their privacy. 3. Does this relationship violate institutional or departmental policies? 4. Are the partners on equal or disparate rungs on the hierarchy ladder? 5. What are the specific potential consequences of the relationship on collateral members of the department? 6. Does the potential benefit to the partners outweigh the potential detriment to the department? 7. How can COI be managed to best ensure the welfare of the partners involved and the department as a whole.

Case Scenarios

Case 1 The residents in a dermatology department go out for drinks after completing in-­ training exams. At the end of the night, two of the PGY3 residents are seen to leave together holding hands. It becomes an open secret that the two had a “one-night stand.” Since that night, their behavior at work has not indicated any further evidence of intimacy. Upon hearing rumor of this incident, the program director becomes concerned about its implications for the residency program. The program director (PD) would like to know what steps, if any, she should take in response. 55 Who are the involved partners and other stakeholders in the WR? –– Two PGY3 residents

–– Stakeholders include primarily other residents, but also faculty, and office staff. –– If possible, identify the nature of their relationship without infringing on their privacy: There appears to be little to no commitment nor indication that this is a long-term relationship. 55 Does this relationship violate institutional or departmental policies? –– This is not specifically stated. We will assume that it is not specifically addressed in the department’s policy manual. 55 Are the partners at equal or disparate rungs of the hierarchy ladder? –– They are on equal rungs, assuming that all PGY3 residents have essentially equal professional responsibilities.

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55 What are the specific potential consequences of this relationship on collateral members of the department? –– Given the nature of the relationship and their equal status, potential COIs are few assuming that both have agreed to the limited nature of their WR.  Assuming that neither resident has authority to influence the career of the other, potential consequences of the WR include the following: –– Other residents may feel uncomfortable with their colleagues “hooking up.” –– The incident may become a source of distracting gossip. –– There is potential for this event to become a source of future conflict or claim of harassment. 55 Does the potential benefit to the partners outweigh the potential detriment to the department? –– The potential detriment to the department appears minimal. Though there is still potential for future claims of harassment, there does not appear to be any immediate threat to departmental well-being. 55 How can COI be managed to best ensure the welfare of the partners involved and the department as a whole? –– In this case, the PD does not need to take significant action to avoid conflicts of interest or to become involved in any way. This scenario depicts mature adults who are acting professionally at work, and unsubstantiated rumors about their personal lives should not be grounds for intervention on the part of the PD.  If, however, the WR were to escalate or prove disruptive to the department, it would then be prudent (and appropriate) to discuss the incident with each resident separately, in order to gain the necessary information rather than relying on rumors, and to determine whether or not action needs to be taken.

Case 2 Sally, a recently appointed junior faculty person in a dermatology department, has been dating Bob, a fourth year medical student at the same institution, for over a year. Bob has recently expressed interest in dermatology and will be completing an audition rotation through the department before applying for residency in the department later in the year. Sally is concerned about her potential to influence her partner’s rotation and the match process. She would very much like for Bob to match in her department. However, she does not want to lose her job or her boyfriend. She would like to act in an ethically responsible way. What actions, if any, need to be taken by Sally? 55 Who are the involved partners and other stakeholders in the WR? –– One junior faculty, and one fourth year medical student seeking residency within the department. –– Stakeholders include other faculty, residents, medical students at the institution, and all medical students applying for residency within the department. –– If possible, identify the nature of their relationship without infringing on their privacy: This appears to be a committed, long-term relationship in which each party has a vested interest in the success of the other. 55 Does this relationship violate institutional or departmental policies? –– Many institutions are more specific about relationships between faculty and students, but for the sake of this discussion, we will assume that it is not addressed in the institutional or departmental policy. 55 Are the partners at equal or disparate rungs of the hierarchy ladder? –– They are in significantly disparate hierarchical positions. 55 What are the specific potential consequences of this relationship on collateral members of the department? –– Members of the department may not feel that they can honestly evaluate the

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medical student because of his relationship with Sally. –– Department members may feel pressured to rank Bob favorably for the match, irrespective of his qualifications. –– Other medical students (both at the institution and from other institutions) may perceive any positive evaluations or outcomes for Bob as favoritism (nepotism). –– Other medical students may fear poor evaluations from Sally as an indirect way of her demonstrating favoritism for Bob. –– The department may develop a reputation as nepotistic if Bob matches there. –– The department may feel more secure that Sally will stay with their department for 4 years while Bob is in residency if he matches there. The department Chair may “tip the scales” in order to retain Sally, particularly if she has unique skills or is seen as a rising star. 55 Does the potential benefit to the partners outweigh the potential detriment to the department? –– The potential detriment to the department and other medical students from Sally’s professional involvement with Bob is significant. –– While Sally and Bob may benefit from working together, this is likely outweighed by the potential harm that could come to others. –– On the other hand, if Sally is particularly valuable to the department, retaining her by selecting Bob benefits the department. 55 How can COI be managed to best ensure the welfare of the involved partners and the department as a whole? –– Sally should make her relationship with Bob known to the department. She should recuse herself from working

with and evaluating Bob, both during his rotation and with regards to the match. –– Sally should not be involved in medical student evaluations or in the match ­ selection this year or until her partner is no longer part of the process. –– Sally does not need to break up with Bob, nor does she need to quit her job. –– Though some perceived conflicts may remain, Bob should be given fair consideration for residency within the department. Case 3 Dr. Jones, a partner in a large dermatology practice has recently begun an affair with Lisa, a medical assistant within the practice. Both Dr. Jones and Lisa are married and have children. They make little effort to conceal their relationship, and several members of the practice have begun to complain about public displays of affection. Dr. Smith is the senior partner in the practice and has been a friend of Dr. Jones for many years. She respects him as a colleague, but has grown very concerned about the effect that this relationship is having on the practice. What should Dr. Smith do next? 55 Who are the involved partners? –– One senior physician and one medical assistant –– If possible, identify the nature of their relationship without infringing on their privacy: This is difficult to evaluate. It appears to not be a one-night stand but long-term. The relationship is complicated by the fact that both parties are already married to someone else. 55 Does this relationship violate institutional or departmental policies? –– While the practice may not have specific policies about romances between physicians and support staff, there is likely a policy in place about PDA or physical

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intimacy in the workplace, which this relationship would violate. 55 Are the partners at equal or disparate rungs of the hierarchy ladder? –– They are at significantly disparate hierarchical positions. No matter how long or well-established in the office an MA may be, the title of MD places the physician in a position of authority (and as a partner, he is, in fact, her employer). 55 What are the specific potential consequences of this relationship on collateral members of the department? –– Public displays of affection in the office are not acceptable, and coworkers have begun to complain, making Lisa’s and Dr. Jones’ interactions clearly inappropriate. –– While marital infidelity is not a matter of workplace ethics, it does likely conflict with values of other members of the practice, especially if they know or are friendly with the affected spouses. –– Though there are no obvious signs of preferential treatment for Lisa, the perception of such may be present among other employees, and will almost certainly affect workplace morale. –– Is the relationship consensual? –– Because of the disparate hierarchal positions, there is some concern for autonomy of the partners involved, especially Lisa, even if the relationship appears consensual. –– The practice must be concerned about retaliation or litigation if the relationship deteriorates. 55 Does the potential benefit to the partners outweigh the potential detriment to the department? –– This WR represents a clear disruption to the work environment for many

employees, due to the disparities in hierarchy of the partners, the extramarital nature of the romance, and the PDA. –– It represents a significant potential legal risk to the practice if the MA becomes litigious in the event that the relationship ends, or if third-party suits are filed by other employees. 55 How can COI be managed to best ensure the welfare of the partners involved and the department/office as a whole? –– Intimate behavior in the workplace is inappropriate. Dr. Smith should work with in-­ house human-resources (HR) professionals if available, or consider hiring an employment attorney or HR consultant to discuss the best strategies for managing this difficult work situation. –– Dr. Smith should additionally work with an HR consultant or employment attorney to carefully review practice policies regarding this type of relationship. At a minimum, disclosures or waivers of liability should be signed in an effort to protect the department/ practice from litigation. Sex in the workplace, though it may be difficult to prove, may likely be grounds for termination of an employee. Though Dr. Jones is a partner and likely not subject to the same disciplinary actions as Lisa, he should be held as even more culpable. Dr., Smith should work with an employment attorney and her other partners to determine the most appropriate recourse. –– Though there are no obvious professional benefits for Lisa at this time, Dr. Smith will have to be vigilant about Lisa being shown favoritism as a result of the relationship.

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Summary Workplace romance is generally considered acceptable as long as the relationship is consensual, limits the expression of intimacy in public, does not violate departmental or institutional policy and both parties comport themselves professionally at work,. As an inherently and necessarily hierarchical workplace, the academic dermatology department is particularly susceptible to COIs when WR occurs among departmental employees [10]. However, the smaller size of most dermatology practices may magnify the impact of a WR. By thoroughly evaluating the potential COIs arising from WR, it is possible to mitigate them and work toward a situation that allows the partners in the relationship to exercise their autonomy and achieve personal satisfaction, while minimizing the negative impacts of that relationship on fellow employees and patients.

References 1. Mainiero LA. Office romance: love, power, and sex in the workplace. New  York: Rawson Associates; 1989. 2. Fisher AB. Getting comfortable with couples in the workplace. Fortune. 1994;130(7):138–44. Available

at https://money.­cnn.­com/magazines/fortune/fort u n e _ a r c h i v e / 1 9 9 4 / 1 0 / 0 3 / 7 9 7 9 4 / i n d e x .­h t m . Accessed 21 June 2019 3. Boyd C. The debate over the prohibition of romance in the workplace. J Bus Ethics. 2010;97(2):325–38. https://doi.org/10.1007/s10551-010-0512-3. 4. Cole N.  Workplace romance: a justice analysis. J Bus Psychol. 2009;24(4):363–72. 5. Wilson FM.  Love is in the air: romantic relationships at work: In Morrison R.L. and Cooper-­ Thomas H.D Relationships in organizations: a work psychology perspective. Palgrave Macmillan, London. 2013. pp. 8–27. 6. Aberg Y.  The contagiousness of divorce. In: Hedström P, Bearman P, editors. Oxford handbook of analytic sociology. Oxford: Oxford Univ. Press; 2009. p. 342–64. 7. Estrich SR.  Sex at work. Stanford Law Rev. 1991;43(4):813–61. 8. Education Amendments Act of 1972, 20 U.S.C. §§1681–1688. 2018. Available at https://www.­ govinfo.­g ov/content/pkg/USCODE-2013-title20/ pdf/USCODE-2013-title20-chap38.­pdf. Accessed 21 June 2019. 9. University of California San Diego website. UC San Diego policy and procedure manual. Conflicts of interest arising out of consensual relationships. Available at: http://adminrecords.­ucsd.­edu/ppm/ docs/200-11.­pdf. Accessed 15 May 2019. 10. Bercovitch L, Grant-Kels JM.  Romance, love, and sex in the dermatology department and residency program. J Am Acad Dermatol. 2018;78(1):220–2.

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Ethically Dealing with Differences: Cultural and Religious Determinants of Healthcare, Extreme Political Views and Bigotry Sarah D. Ferree, Alexandra Charrow, and A. Shadi Kourosh Contents References – 219

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_22

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nnLearning Objectives

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1. Appreciate cultural, religious and political determinants of healthcare. 2. Understand culturally competent care and the components of culturally competent care. 3. Recognize the growing need for medical providers to offer culturally competent care and the means of addressing health disparities through culturally competent care. 4. Understand how the ethical principles of justice and beneficence play a role in delivering culturally competent healthcare.

>>Points of Emphasis 55 Disparities in health result from cultural differences between patient and provider, such as language, religious, and political differences 55 Cultural competency aims to understand cultural differences and their influences on patient’s interactions with the healthcare system, as well aims to improve care for minority patients in the form of organization, structural, and clinical interventions. 55 The ethical principles of beneficence and justice underlie the need for culturally competent healthcare

Cultural and Religious Determinants of Healthcare In our current healthcare environment, now more than ever, providers are charged with the care of individuals from around the globe  – individuals with diverse racial, religious and ethnic backgrounds, of diverse genders, languages, cultural practices, sexual orientations, and socioeconomic status. With increased migration and travel, many countries are becoming more diverse, experiencing rapid demographic shifts [1]. The United States and several European countries for example are expected to undergo a “majority-minority crossover” before 2044 leading to minority nonHispanic White populations within these countries (. Table 22.1) [2]. Moreover, around  

..      Table 22.1  Projected change in race populations of United States [1] Race and Hispanic origin

% of United States population 2016 2060

Non-Hispanic white

62.2 %

43.6 %

Black or African American

13.2 %

14.3 %

Hispanic or Latino origin

17.4 %

28.6 %

Asian

5.4 %

9.3 %

American Indian and Alaska native

1.2 %

1.3 %

Native Hawaiian and other Pacific islander

0.2 %

0.3 %

Two or more races

2.5 %

6.2 %

..      Table 22.2  Projected change in global religious populations (Pew Research Center 2015) Religion

% of global population 2010 2050

Christians

31.4 %

31.4 %

Muslims

23.2 %

29.7 %

Unaffiliated

16.4 %

13.2 %

Hindus

15.0 %

14.9 %

Buddhists

7.1 %

5.2 %

Folk religions

5.9 %

4.8 %

Jews

0.2 %

0.2 %

Other religions

0.8 %

0.7 %

mid-century, Islam is likely to become the predominant world religion (. Table  22.2) suggesting demographic changes to both the ethnic and religious makeup of many countries. Healthcare providers are frequently finding themselves caring for patients of different ethnicities and with differing cultural backgrounds and belief systems from their own. Dermatologists are certainly no exception; understanding current societal changes and the disparities experienced among ethnic and religious groups is central to providing quality equitable care to a changing demographic [3].  

211 Ethically Dealing with Differences: Cultural and Religious Determinants…

An individual’s race is solely based on physical characteristics, such as skin color and facial features, while ethnicity refers to a group’s common sociocultural background with shared characteristics such as culture, language, religion, and geographic origins. A specific racial category may be made up of hundreds of different ethnic groups with significant genetic variations, and race is less a biological construct than a political or social one. Culture has been defined as:

»» A set of guidelines (both explicit and implicit)

which individuals inherit as members of a particular society, and which tells them how to view the world, how to experience it emotionally, and how to behave in it in ­relations to other people, to supernatural forces or gods, and to the natural environment. It also provides them with a way of transmitting these guidelines to the next generation—by the use of symbols, language, art and ritual [4].

One’s ethnic group can significantly influence culture, which in turn determines their values, beliefs, and interactions with healthcare. There is abundant evidence that members of some racial and ethnic minority groups suffer from disparities in health leading to systematic variations in mental and physical well-being that specifically result from inequitable economic, political, social, and psychological processes [5]. These disparities are experienced as higher rates of cancer, chronic diseases such as obesity, cardiovascular disease and diabetes, greater infant mortality, shorter life expectancy, and other poor health outcomes [6–9]. Dermatology also encounters these disparities; Black and Hispanic patients experience higher morbidity and mortality than white patients from skin cancer, and racial minorities appear to have a higher prevalence and/or severity of atopic dermatitis [10]. Additionally, Black and Hispanic patients are less likely to receive treatment for acne, less likely to receive that treatment from a dermatologist, and are more likely to utilize emergency departments for dermatologic concerns [11, 12]. These inequalities in health outcomes and access are often attributed to the lower

socioeconomic status (SES) and lower levels of health insurance coverage among minority groups. Access to care, among many other social determinants of health, is also significantly decreased among minority patients [8, 9, 13, 14]. However, even when SES, access to care, and other confounders are controlled for, minority groups continue to suffer poorer health outcomes [9, 15–17]. Other factors, such as provider biases and systematic racism, language and communication style variations, beliefs and attitudes towards health and the health system, and differing political opinions may contribute to the health disparities experienced by members of racial and ethnic minority groups. >>Points of Emphasis 55 There is abundant evidence that members of some racial and ethnic minority groups suffer from disparities in health leading to systematic variations in mental and physical well-being that specifically result from inequitable economic, political, social, and psychological processes. 55 These inequalities in health outcomes and access are often attributable to the lower socioeconomic status (SES), decreased access to healthcare and lower levels of health insurance coverage among minority groups. 55 Even when SES, access to care, and other confounders are controlled for, minority groups continue to suffer poorer health outcomes

Stereotypes and Biases Physicians “uphold ethical responsibilities not to discriminate against a prospective patient on the basis of race, gender, sexual orientation or gender identity, or other personal or social characteristics that are not clinically relevant to the individual’s care.” [18] Although it may be the rare physician that is “explicitly” biased or outright bigoted, providers are frequently saddled with biases, especially subconscious or “implicit” biases that greatly affect patient evaluation and management and may be

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e­ specially relied upon by an overworked physician or in high-stress clinical situations [19]. This is in addition to the reality that many physicians are already operating within a healthcare system that is inherently prejudiced against minority patients [20]. Patient race has been associated with a physician’s implicit assessment of a patient’s intelligence, ability to adhere to treatment plans, and assumptions of risk-taking and drug-use, and impacts the care a given patient receives [21]. In turn, this perceived discrimination by patients also results in lower rates of medication adherence and poor health outcomes [22, 23]. Patients may also limit or exhibit worry during interactions with outgroup providers due to fear of confirming common negative stereotypes about their ethnic or cultural group, termed “stereotype threat”, which can create an unfortunate cycle between physician’s stereotyped expectations of patient behavior and subsequent non-­ adherence to their recommendations [19].

 rust of Medical Providers T and Research The American Medical Association’s code of ethics states that the “relationship between a patient and a physician is based on trust, which gives rise to physicians’ ethical responsibility to place patients’ welfare above the physician’s own self-interest or obligations to others, to use sound medical judgment on patients’ behalf, and to advocate for their patients’ welfare.” [24] This important relationship is jeopardized by patient mistrust of physicians within certain racial and ethnic contexts. Black and Native American patients have an especially reduced trust in physicians and medical research; events such as mass involuntary sterilizations, the Havasupai diabetes project, and most famously, the Tuskegee Syphilis Study, have eroded minority trust in health care and medical research, and have created the perception that patients are treated differently exclusively due to race [25–27]. This mistrust of medical providers has led to an overall reduced participation by minorities in research studies and can interfere with a

patient’s desire to seek care as well as adhere to treatment regimens [28]. However, a systematic review of barriers to participation in dermatologic research did not find evidence of any specific barriers to minority participation, such as provider trust [29]. In a separate study, African American parents participating in a pediatric dermatology study reported significantly less trust in research and more feelings that their child would be “treated like a guinea pig,” but were still equal to Caucasian parents in willingness to allow their child’s participation in research [30]. It is important to recognize that patients of certain minority groups may require additional effort in establishing trusting patient-physician relationships and additional consideration when participating in dermatologic research.

Language and Communication Language is an essential component of culture that can be a significant barrier to seeking and receiving quality healthcare. Lack of language concordance between patient and provider results in delay of care, worse patient experiences when care does occur, and increased medical errors [31–33]. In dermatology, language barriers can significantly complicate processes of informed consent for procedures, communicating test results and important diagnoses such as malignancy, and discussing treatment plans. Access to interpreter services and provider training in appropriate use of these services can help alleviate these issues. Moreover, though medical interpreter services are legally required in many circumstances, medical interpreting notably improves overall patient satisfaction and access to care [34]. However, even when high quality interpreting occurs, disparities in care continue to exist and issues such as trust in translations given and reduced provider attention and/or time devoted to the interaction may occur [35]. Communication styles and preferences may differ across cultures. For example, Black American patients in one study were more likely to prefer face-to-face communication to over the phone communication of malignant biopsy results [36]. Some cultures prefer high

213 Ethically Dealing with Differences: Cultural and Religious Determinants…

levels of provider communication, while other cultures, such as some Asian and Pacific Islanders cultures, may prefer little or even no information regarding certain diagnoses and treatment plans [37]. Furthermore, nonverbal communication methods and “body language” are more meaningful in some cultures and may lead to misunderstandings in patient-­ physician interactions or overlooked subtle signs of illness. Cultural tradition may also lead to presentation of gifts to the provider as a means of communicating gratitude and trust, which may occasionally conflict with hospital or practice ethical standards. Patients with low health literacy appear to be particularly unlikely to access primary care and undergo necessary health screenings when compounded with language barriers [38]. Health literacy is the ability to obtain, understand and use health-related information to navigate the healthcare system and make appropriate health decisions [39]. Insufficient health literacy is highly prevalent, affecting 34–59% of the population in developed countries, and presents a significant cost to health systems [40]. Dermatology patients may have limited understanding of the often-­ complex terminology used in describing skin lesions and dermatologic diagnoses, and disparity exists between patients and physicians in interpreting these medical terms [41]. Improving patient health literacy may prove to be an important target in promoting healthcare equity and improving care access and utilization by minority communities. >>Points of Emphasis 55 Lack of language concordance between patient and provider results in delay of care, worse patient experiences when care does occur, and increased medical errors 55 Communication styles and preferences may differ across cultures. 55 Patients with low health literacy appear to be particularly unlikely to access primary care and undergo necessary health screenings when compounded with language barriers.

Religion and Medicine Religious, spiritual, and philosophical beliefs can play a substantial role in a patient’s interaction with the healthcare system. Religious and spiritual relationships to medicine have long existed, and beliefs surrounding the origins of dermatological diseases, such as in leprosy or ergotism, are no exception [42, 43]. Cultural beliefs and medicine can further manifest in dermato-psychiatric disease, and religious devotion or appeal for spiritual protection can be expressed in intentional skin practices such as tattooing [44, 45]. Religious practices of extensive fasting may contribute to poor wound healing and cessation of topical medication regimens during these periods, but may also ameliorate certain diseases such as atopic dermatitis and psoriasis [46]. Awareness of beliefs and religious practices relating to skin disease could assist dermatologists in counseling patients and devising culturally mindful treatment plans. As with many other demographic characteristics, patient-physician spiritual concordance frequently leads to greater ease of conversation, especially with respect to very sick patients as is the case in Stevens-Johnson syndrome, DRESS syndrome, and calciphylaxis patients [47]. Dermatology in particular requires partial or full nudity and this can lead to misunderstanding and poor treatment especially when confronting the modesty norms of some cultures and religions [48]. While AMA guidelines require physicians to provide chaperones should they be requested [49], the exam may still be considered invasive or uncomfortable for some patients, especially if there is gender discordance or a patient’s particular religious preferences have not been addressed. Physicians themselves may hold their own set of cultural, religious or philosophical beliefs that can affect the patient-physician relationship and care received. In fact, the majority of physicians appear to hold religious or spiritual beliefs, and many report that these beliefs play a role in their practice of medicine [50, 51]. The AMA Code of Ethics allows for physicians “to act (or refrain from acting) in accordance with the dictates of conscience in their professional

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practice” given that certain conditions are met [52]. Unless there is imminent risk of harm to the patient, delay in treatment would cause harm, or the patient is unable to reasonably access the necessary care from another physician, providers may give counseling regarding the full range of services and a referral for care (frequently reproductive or end of life care) if the treating physician finds these issues m ­ orally objectionable [52]. However, it is important to consider that this discussion and referral does not always occur in practice and may cause concern for harm to some patients [53]. For dermatologists, this most frequently presents in the form of moral objection to providing oral contraception to female patients as treatment for acne or other hormonally-­ mediated cutaneous disease. In these cases, medical ethics would suggest counseling by the dermatologist on the full range of treatment for acne, including OCP’s, and referral to another accessible provider should the patient wish to pursue this treatment.

Complementary and Alternative Medicine Hand in hand with religious beliefs are the cultural attitudes surrounding medical treatment, which differ among groups and affect individuals’ feelings regarding medications and adherence to prescribed regimens. Thus, many patients (ranging from 9.8% to 76.0% of adults in many developed countries) use traditional, integrative, complementary or alternative medicines as adjunctive to, or less commonly in lieu of, recommended medical treatments [54, 55]. Complementary and alternative medicine (CAM) refers to health care products and practices that are generally outside of those used in conventional or “dominant” health care systems, and includes herbal supplements, minerals, specific diets, energy-based remedies, massage, acupuncture, yoga, prayer, and other mind-body practices [54]. CAM is more prevalent and more likely to be used in lieu of prescribed medications in certain racial and ethnic groups and is reported by these groups as being more similar to their cultural traditions and belief systems than the care

received from many medical practitioners [56]. Patients may use CAM when there are barriers to obtaining, or there exists misunderstanding or mistrust for, conventional medications [57]. Some CAM practices, such as acupuncture, have been validated within the medical literature  – including for some dermatologic disease [58]. However, the efficacy of many other CAM practices in treating disease symptoms has not been extensively examined or relies on questionable data. Moreover, many negative side effects, reactions, and toxic exposures have been reported in the literature due to use of CAM products [59, 60]. Complementary and alternative medicine may be particularly relevant to dermatologists given the skin exam findings related to many of these practices. Practices such as coining and cupping, acupuncture, and moxibustion can result in direct injury to the skin with ulcers, burns, blistering, and bleeding. Additionally, some CAM practices may result in contact dermatitis, infections, scarring, and ingested herbs and minerals may result in systemic toxicity, photosensitivity, Stevens-Johnson syndrome/toxic epidermal necrolysis, acute generalized exanthematous pustulosis, DRESS syndrome, and other serious dermatologic outcomes [61]. Patients frequently do not disclose complementary and alternative medicine to their providers  – often for fear of their provider’s disapproval of these practices, as well as lack of physician knowledge about and inquiry into these practices [62]. It is an especially important line of discussion when considering treatment options for dermatology patients given the frequent hesitancy to present or answer questions about CAM with providers, and the occasional importance of these practices in appropriate dermatologic diagnosis. >>Point of Emphasis 55 CAM is more prevalent and more likely to be used in lieu of prescribed medications in certain racial and ethnic groups and is reported by these groups as being more similar to their cultural traditions and belief systems than the care received from many medical practitioners.

215 Ethically Dealing with Differences: Cultural and Religious Determinants…

Cultural Competency

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competency requires an awareness of not only other cultures beliefs and practices, but one’s A few key ethical principles underlie the need own attitudes and reactions towards others. A nuanced discussion and presentation of to address disparities in healthcare for minorevery culture’s practices and views relevant to ity patients. Beauchamp and Childress laid healthcare cannot possibly be presented here. out the most relevant principles of bioethics It is important, then, that physicians aim to in their work, Principles of Biomedical Ethics, achieve an understanding of the various culsuggesting that all practitioners are balancing tures with which they frequently interact and 4 ethical primary principles in the care of their beliefs relevant to health care, in order to patients. These are respect for autonomy, non-­ provide their patients culturally competent maleficence, beneficence, and justice. While the former 2 principles come into play fre- care. Additionally, it requires a skill set with quently with respect to care delivered to all which to seek and acquire the knowledge necindividuals, it is the latter 2 that are highlighted essary for care of diverse cultures. Moving with respect to equal delivery to minority forward, interventions to improving culturally patients [63]. The moral foundations competent care will occur at three levels: (1) underlying the principle of justice are that organizational interventions targeted to people are equal in worth and are deserving of increasing provider and leadership diversity respect. It follows that respect for the whole to more closely match the patients they serve, person regardless of race or ethnicity, culture, (2) structural interventions such as previously-­ religion, etc. means providing all patients mentioned interpreters and culturally approquality care is an act of justice [64]. Justice for priate educational materials, and (3) clinical minority patients thus requires the twenty- interventions to enhance individual provider first century clinician to adopt skills allowing cultural knowledge and sensitivity in providfor navigation of interactions with patients of ing care [65]. Racial and ethnic minorities are under-­ differing cultures and religions. Further, it represented in both medical school and medirequires a commitment to understanding and cal practice [67]. This is especially true of accepting patients’ varied backgrounds and dermatology; for example, only 4% of US dervalues. Cultural competency aims to achieve matologists identify as Black, while approxithese goals and assist providers in providing mately 13% of the overall population identifies high value and relevant care to all patients. as Black. Dermatology is second only to Betancourt, among others, introduced culorthopedics in being one of the least ethnitural competency in medicine as: cally and racially diverse specialties [1, 68]. Understanding the importance of social This paucity of providers from minority and cultural influences on patients’ health groups is likely exacerbating health disparities beliefs and behaviors; considering how these in dermatology patients from diverse backfactors interact at multiple levels of the grounds, as patients are more likely to seek health care delivery system (e.g., at the level and receive care, as well as experience better of structural processes of care or clinical health outcomes and greater satisfaction, decision making); and, finally, devising when treated by concordant providers [3, 69– interventions that take these issues into 71]. Although diversity in medical school account to assure quality health care delivmatriculants has been steadily increasing, ery to diverse patient populations [65]. diversity in applicants to dermatology residency programs continues to lag behind Betancourt has also acknowledged that cul- [72]. In order to increase diversity within tural competency is not solely the acquisition dermatology and create more concordance and use of knowledge of cultural influences, between providers and patients, three key but also a set of skills that allows one to action items have been proposed: increasing understand and interact fluidly with varied the number of under-represented students in cultural groups [66]. Furthermore, cultural medicine (UIM) applying to medical school

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(including Black, Hispanic, and Native American students), increasing UIM medical students’ exposure to the field of dermatology, and growing the number of UIM students recruited into dermatology residency programs [73]. Culturally competent care will require increasing the diversity of dermatologists going forward to be more in line with the populations being treated. Providing care that is culturally competent will also require improved training of current dermatology trainees and providers, as promising (but limited) evidence exists that cultural competency training actually improves patient outcomes [74]. The American Board of Dermatology, in conjunction with the Accreditation Council for Graduate Medical Education, has identified key principles of cultural competency that are included in the program recommendations for graduate medical education in dermatology; many other professional bodies have similar training requirements [75]. Cultural competence has been increasingly implemented in medical school training. The Association of American Medical Colleges has established standards for cultural competence training and has implemented an integrated curriculum in cultural competency for undergraduate medical education [76]. A number of continuing medical education courses, published guides, conferences, workshops, and other educational resources in cultural competency exist for the more established professional [69]. Because it is impossible to learn all cultures, standardized methods for culturally-sensitive patient interviews and eliciting patient’s individual perceptions of care exist for use. The LEARN guidelines suggest that the physician listen to the patient’s perception of the problem, explain their professional opinion, acknowledge differences and similarities, and provide recommendations and negotiate on treatment [77]. The RISK model relies on physicians to assess the patient’s resources, understand the individual identity of the patient, identify his/her skills in navigating healthcare and illness, and acquire knowledge about the patient’s ethnic and cultural group and beliefs [78]. These methods are generally simple and straightforward to introduce into

all patient encounters, and aid in creation of a stronger therapeutic alliance. >>Points of Emphasis 55 Cultural competency is not solely the acquisition and use of knowledge of cultural influences, but also a set of skills that allows one to understand and interact fluidly with varied cultural groups. Furthermore, cultural competency may require an awareness of not only other cultures beliefs and practices, but one’s own attitudes and reactions towards others. 55 Interventions to improving culturally competent care will occur at three levels: (1) organizational interventions targeted to increasing provider and leadership diversity to more closely match the patients they serve, (2) structural interventions such as previously-mentioned interpreters and culturally appropriate educational materials, and (3) clinical interventions to enhance individual provider cultural knowledge and sensitivity in providing care 55 The paucity of providers from minority groups is likely exacerbating health disparities in dermatology patients from diverse backgrounds, as patients are more likely to seek and receive care, as well as experience better health outcomes and greater satisfaction, when treated by concordant providers 55 Culturally competent care will require increasing the diversity of dermatologists going forward to be more in line with the populations being treated.

 pecial Section: Extreme Political S Views and Dealing with Bigotry Political ideologies have an inherent role in many individuals’ cultures and belief systems. These views on politics and the role of government are meaningful in shaping responses to societal events and play a role in not only shaping our health systems, but also individual patient health. Political and religious extremism, especially in highly con-

217 Ethically Dealing with Differences: Cultural and Religious Determinants…

servative or “far-right” groups, and white supremacist ideologies, have been on the rise around the world since at least 2011, and is accounting for an increased incidence of violent acts and terrorism in some areas [79, 80]. Extremist ideologies and activities on either end of the political spectrum, by definition, oppose the fundamental values of society, democracy, and basic human rights; they do so by advocating for racial, religious, political, or socioeconomic supremacy with a general disregard for others [81]. These extremist ideologies are predicted to have a number of meaningful effects detrimental to public health and patient access to healthcare in coming years [82]. In discrete interactions, both patients and providers may have implicit biases affecting the exchanges. Rarely the patient demonstrates explicit bias or is outright bigoted. Many radicalized individuals hold views consistent with xenophobia, homophobia, misogyny, racism, etc. Thus, it may be challenging for a provider, especially a provider identifying with the denigrated group, to be confident in providing high quality care given that evidence suggests physicians who feel a patient is “disruptive” or “hateful” are unable to focus their clinical judgment and are significantly more likely to make a diagnostic error [83, 84]. How should dermatologists react when, due to bigotry, a patient refuses care or requests a different provider? Patients have a right to refuse medical care, and providers have an ethico-legal obligation to honor the patient’s refusal due to an obligation of nonmaleficence and respect for the patient’s autonomy as well as laws regarding assault and battery. However, these ethical and legal principles do not apply when the patient is unconscious and requires emergency treatment under the Emergency Medical Treatment & Labor Act (EMTALA) and/or the patient lacks decision making capacity for other reasons and a proxy is unavailable– a situation in which dermatologists may rarely, if ever, find themselves. In common ambulatory or consult settings, it is then reasonable to attempt discussion and understanding with the patient (and family, if present) regarding misunderstandings, or motivations for refusing care or requesting an

alternate provider [85]. Clinicians may have a number of options for handling patients who have clearly expressed bigotry toward a provider depending on the care setting, availability and willingness of other providers and staff, and personal comfort in providing care for the specific patient (. Fig. 22.1) [86]. Regardless of intolerant beliefs and behaviors, the ethical principles of beneficence and justice in treating all patients as outlined by Beauchamp and Childress [63] dictate that bigoted patients be afforded respect and equal options for receiving high quality care. However, it is important to note that no requirements are absolute  – providers unable to provide equal care to patients due to the psychological distress and emotional toll of caring for hateful patients should feel supported in referring the stable dermatologic patient to a different provider. Importantly, professionalism in these interactions should be maintained at all times, regardless of the manner in which the provider chooses to handle the situation. As the world around us continues to change demographically, the demands on physicians to deliver culturally competent care only increases. Dermatologists have additional obligations given the specialty’s focus on the skin. This, in combination with an increasingly homogenous attending workforce, suggests that dermatology has room for improvement – both in recruiting and retaining physicians of color and in bridging the disparities that exist in care delivery within the field. This can be achieved through increased education, cultural competency, increased awareness of religious and cultural practices, bioethical training, and recruitment and retention of diverse dermatology residents and medical students. A dermatologist’s obligation towards justice demands that he or she provide high-quality care to all patients and this obligation necessitates a better understanding of the factors related to equitable care delivery.  

>>Point of Emphasis 55 Providers unable to provide equal care to patients due to the psychological distress and emotional toll of caring for hateful patients should feel supported in referring the stable derma-

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Offer referral or transfer to another healthcare provider/facility

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Negotiate with patient reasonable accomodations and set expectations limiting unacceptable language and conduct; attempt to educate patient regarding prejudice

Patient has decision making capacity, and expresses bigoted motivations for refusing care

Discuss among providing team regarding reassigning patient’s care

..      Fig. 22.1  Provider options in non-emergent care of bigoted patients

tologic patient to a different provider. Importantly, professionalism in these interactions should be maintained at

all times, regardless of the manner in which the provider chooses the handle the situation.

Case Scenarios

Case 1 A 46-year-old Muslim female patient presents by herself for an initial dermatologic visit and learns at this time that her dermatologist is male. The patient states that due to her religious beliefs she declines a skin exam from this physician. What might be done in this situation? Discussion – Certain cultures and religions emphasize modesty, particularly for women such as the patient described in this scenario. Thus, she has declined a physical exam that involves disrobing for a male physician due to her beliefs. There are several issues to consider in this scenario. From an ethical perspective this patient is equally deserving of dermatologic care as are all human beings due to the principle of justice; however, providing culturally competent care for this observant Muslim female requires accommodation to demonstrate appropriate respect for this patient’s cultural and religious beliefs. On the basis of patient autonomy, she is also entitled to an informed choice in the provider and medical services she receives. Additionally, assault and

battery laws dictate that the patient cannot be examined by any provider against her will. There are several options available to ensure that this patient gets the care she needs. Some patients may consent to a physical exam from a provider of a different gender with the presence of a gender-­ concordant chaperone, either another member of the medical team or a family member. If the patient refuses this option, it would then be appropriate to find the patient a dermatologist of concordant gender. The dermatologist should inquire as to the patient’s chief concern, in order to ascertain the severity of her problem and if emergency treatment is required. In an emergent setting, beliefs may permit evaluation of a patient by a physician of the opposite gender with use of a chaperone if no gender-concordant provider is available and willing to see the patient. If the situation is nonemergent, it may be more reasonable to provide the patient with an appointment with another provider in the practice or provide the patient with a referral to a different dermatologic practice with a gender-concordant provider.

219 Ethically Dealing with Differences: Cultural and Religious Determinants…

Case 2 A 19-year-old male presents for follow up evaluation of atopic dermatitis. When inquiring about use of the previously prescribed topical steroid medication, he states that he has not been using the medication but instead has been treating with several rounds of acupuncture therapy. How might you handle this? Discussion  – Use of complementary and alternative medicine (CAM) is quite common, even in areas where conventional or “Western” cultural values prevail. Often, patients will not reveal they have been using CAM without direct questioning regarding these practices and products. In light of cultural competency, it is important to understand why the patient chooses CAM and why they choose to forgo conventional treatments, in this case topical steroids. It may be that this patient does not understand the need for or the protocol for use of topical steroids. Alternatively, the patient may be concerned about the medication’s safety profile or side effects, in which case more discussion and patient education should be undertaken. Commonly, CAM practices may be employed when the prescribed medication is not affordable and/or is not covered by insurance. The discovery of this information would allow for prescription of an economical alternative medication or an opportunity to appeal to the medical insurance provider on behalf of the patient. If the patient is able to obtain the prescribed treatment and is comfortable with its

References 1. Percent Distribution of the Projected Population by Hispanic Origin and Race for the United States: 2015 to 2060. Current Population Reports P25– 1143. Washington, D.C.: U.S.  Census Bureau, Washington; 2014. 2. “The Future of World Religions: Populations Growth Projections, 2010–2050.” Pew Research Center, Washington, D.C. (April 2, 2015) https:// w w w.­p e w fo r u m .­o r g / 2 0 1 5 / 0 4 / 0 2 / r e l i g i o u s projections-2010-2050/. 3. Jackson C, Maibach H. Ethnic and socioeconomic disparities in dermatology. J Dermatolog Treat. 2016;27:290–1. https://doi.org/10.3109/09546634.20 15.1101409.

use, should the dermatologist agree to sanction their continuation of the CAM (in this case, acupuncture) as an adjunct in order to align their treatment with their cultural beliefs? It is important to consider the specific CAM product or practice the patient is utilizing, and it may be necessary to consult the literature regarding its efficacy and potential side effects. In the above example, there is some evidence in the literature to suggest that acupuncture may be efficacious in treating atopic dermatitis [61]. If the patient finds this practice helpful, providing culturally competent care would require the dermatologist respecting this patient’s specific beliefs in using CAM and his autonomy in continuing acupuncture. Other CAM practices for which there is little to no evidence, or literature exists stating it may be harmful, would be important to discuss and review with the patient. It is imperative to understand the reasons the patient is seeking out the use of the CAM product/practice and further review the medical evidence with the patient. In the case of CAM potentially causing harm to the patient, it would be imperative for the dermatologist to try to balance the obligation of nonmaleficence with the need to respect for the patient’s beliefs and autonomy. A complete discussion with the patient on why discontinuation of the product or practice is recommended would need to be undertaken if the CAM of choice was associated with risks and no medical benefit to the patient.

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37. Collins RL, Haas A, Haviland AM, Elliott MN. What matters most to whom: racial, ethnic, and language differences in the health care experiences most important to patients. Med Care. 2017;55:940– 7. https://doi.org/10.1097/MLR.0000000000000804. 38. Sentell T, Braun KL, Davis J, Davis T. Colorectal cancer screening: low health literacy and limited English proficiency among Asians and Whites in California. J Health Commun. 2013;18(Suppl 1):242–55. https:// doi.org/10.1080/10810730.2013.825669. 39. Berkman ND, Davis TC, McCormack L. Health literacy: what is it? J Health Commun. 2010;15(Suppl 2):9–19. https://doi.org/10.1080/10810730.2010.499 985. 40. Eichler K, Wieser S, Brügger U. The costs of limited health literacy: a systematic review. Int J Public Health. 2009;54:313–24. https://doi.org/10.1007/ s00038-009-0058-2. 41. Lucero M, Bendeck S, Ramos-Ceballos F, Foster J, Chen SC.  Language disparities between patients and dermatologists in describing acne lesions. J Am Acad Dermatol. 2007;56:268–73. 42. Hsiao C, Maranda EL, Estes WA, Soza GM, Nouri K. Dermatology and possession. JAMA Dermatol. 2016;152:1034. https://doi.org/10.1001/jamadermatol.2016.0507. 43. Mundra LS, Maranda EL, Cortizo J, Augustynowicz A, Shareef S, Jimenez JJ. The Salem witch trials-bewitchment or ergotism. JAMA Dermatol. 2016;152:540. https://doi.org/10.1001/jamader matol.2015. 4863. 44. Kechichian E, Khoury E, Richa S, Tomb R. Religious stigmata: a dermato-psychiatric approach and differential diagnosis. Int J Dermatol. 2018;57:885–93. https://doi.org/10.1111/ijd.13971. 45. Scheinfeld N. Tattoos and religion. Clin Dermatol. 2007;25:362–6. 46. Bragazzi NL, Sellami M, Salem I, Conic R, Kimak M, Pigatto PDM, et  al. Fasting and its impact on skin anatomy, physiology, and physiopathology: a comprehensive review of the literature. Nutrients. 2019;11:E249. https://doi.org/10.3390/nu11020249. 47. Ellis MR, Cambell JD. Concordant spiritual orientations as a factor in physician—patient spiritual discussions: a qualitative study. J Relig Health. 2005;44:39–53. 48. Hussain A. Recommendations for culturally competent dermatology care of Muslim patients. J Am Acad Dermatol. 2017;77:388–9. https://doi. org/10.1016/j.jaad.2017.03.004. 49. American Medical Association Code of Medical Ethics. Opinion 1.2.4  – Use of Chaperones. 2019 [cited April 12, 2019]. https://www.­ama-assn.­org/ system/files/2019-01/code-of-medical-ethicschapter-1_0.­pdf. 50. Robinson KA, Cheng MR, Hansen PD, Gray RJ.  Religious and spiritual beliefs of physicians. J Relig Health. 2017;56:205–25. https://doi. org/10.1007/s10943-016-0233-8.

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51. Ramondetta L, Brown A, Richardson G, Urbauer D, Thaker PH, Koenig HG, et  al. Religious and spiritual beliefs of gynecologic oncologists may influence medical decision making. Int J Gynecol Cancer. 2011;21:573–81. https://doi.org/10.1097/ IGC.0b013e31820ba507. 52. American Medical Association Code of Medical Ethics. Opinion 1.1.7  – Physician Exercise of Conscience. 2019. [cited April 15, 2019]. https:// www.­a ma-assn.­o rg/system/files/2019-01/code-ofmedical-ethics-chapter-1_0.­pdf. 53. Desai S, Jones RK, Castle K.  Estimating abortion provision and abortion referrals among United States obstetrician-gynecologists in private practice. Contraception. 2018;97:297–302. https://doi. org/10.1016/j.contraception.2017.11.004. 54. McQuaid EL, Landier W. Cultural issues in medication adherence: disparities and directions. J Gen Intern Med. 2018;33:200–6. https://doi.org/10.1007/ s11606-017-4199-3. 55. Harris PE, Cooper KL, Relton C, Thomas KJ.  Prevalence of complementary and alternative medicine (CAM) use by the general population: a systematic review and update. Int J Clin Pract. 2012;66:924–39. https://doi.org/10.1111/j.1742-1241. 2012.02945.x. 56. Nguyen H, Sorkin DH, Billimek J, Kaplan SH, Greenfield S, Ngo-Metzger Q. Complementary and alternative medicine (CAM) use among non-­ Hispanic white, Mexican American, and Vietnamese American patients with type 2 diabetes. J Health Care Poor Underserved. 2014;25:1941–55. https:// doi.org/10.1353/hpu.2014.0178. 57. McQuaid EL, Fedele DA, Adams SK, Koinis-­ Mitchell D, Mitchell J, Kopel SJ, et al. Complementary and alternative medicine use and adherence to asthma medications among Latino and non-Latino white families. Acad Pediatr. 2014;14:192–9. https:// doi.org/10.1016/j.acap.2013.09.006. 58. Yeh ML, Ko SH, Wang MH, Chi CC, Chung YC. Acupuncture-related techniques for psoriasis: a systematic review with pairwise and network meta-­ analysis of randomized controlled trials. J Altern Complement Med. 2017;23:930–40. https://doi. org/10.1089/acm.2016.0158. 59. Ernst E. Adverse effects of herbal drugs in dermatology. Br J Dermatol. 2000;143:923–9. 60. De Smet PA.  Herbal remedies. N Engl J Med. 2002;347:2046–56. 61. Vashi NA, Patzelt N, Wirya S, Maymone MBC, Zancanaro P, Kundu RV.  Dermatoses caused by cultural practices: therapeutic cultural practices. J Am Acad Dermatol. 2018;79:1–16. https://doi. org/10.1016/j.jaad.2017.06.159. 62. Foley H, Steel A, Cramer H, Wardle J, Adams J.  Disclosure of complementary medicine use to medical providers: a systematic review and meta-­ analysis. Sci Rep. 2019;9:1573. https://doi. org/10.1038/s41598-018-38279-8.

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Ethics in Caring for Sexual and Gender Minority Patients Connie J. Kha, Mark Luskus, and Howa Yeung Contents Introduction – 224 Definitions and Cultural Competency – 225  ealth Inequity in SGM Persons and Minority H Stress Theory – 225  linical and Ethical Issues in Treating Acne C in SGM Persons – 226 Conclusion – 230 References – 230

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_23

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nnLearning Objectives

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..      Table 23.1  Definition of common terms in caring for sexual and gender minority persons

1. To review health disparities experienced by sexual and gender minority persons and relevant sociocultural context. 2. To examine ethical issues surrounding isotretinoin in treating acne in sexual and gender minority persons. 3. To examine ethical issues surrounding dermatologic procedures for transgender and gender non-conforming persons.

Sexual orientation

How a person characterizes their emotional and/or sexual attraction to others. Examples of sexual orientation labels include lesbian, gay, bisexual, pansexual, asexual, etc. Of note, this does not necessarily correlate with sexual behavior. For example, a self-identified lesbian woman may have had sex with men and women.

Gender identity

A person’s sense of being a man, a woman, or other gender

Transgender

A person who experiences a gender that differs from their sex assigned at birth. Sexual orientation varies and is not dependent on gender identity.

Cisgender

A person who experiences a gender that is congruent with their sex assigned at birth.

Non-binary or gender non-­ conforming

A person who identifies with gender(s) in between or beyond ‘man’ or ‘woman’ or who does not identify with a gender.

Gender affirmation

The process of recognizing, accepting, and expressing one’s gender identity for transgender and gender non-conforming persons. Some persons may seek hormonal and/or surgical treatments to align their physical bodies with their gender identity.

>>Points of Emphasis 55 SGM persons represent a diverse range of gender identities, sexual orientations, expressions, and behaviors. 55 SGM persons experience specific health and healthcare disparities. Dermatologists play a critical role in addressing the unique healthcare needs of SGM patients and can provide affirming, culturally competent, and safe care. 55 The care of SGM patients should be guided by the ethical principles of autonomy, beneficence, non-maleficence, and justice.

Introduction Sexual and gender minority (SGM) is an umbrella term defined by the National Institutes of Health to include “lesbian, gay, bisexual, and transgender (LGBT) populations as well as those whose sexual orientation, gender identity and expressions, or reproductive development varies from traditional, societal, cultural, or physiological norms” [1]. Q has recently been added to this acronym (LGBTQ) to include “queer or questioning”. SGM populations have been historically marginalized and face substantial health disparities, including disparities in skin diseases and barriers to access to equitable dermatologic care [2]. However, over the recent decades, SGM health has become a national priority and a growing body of research has elucidated health inequities. The role of dermatologists in

caring for SGM adults and youth is increasingly being recognized. Understanding the unique sociocultural and medical aspects of health care for SGM persons will help dermatologists recognize and proactively address specific clinical and ethical scenarios that may arise, particularly around acne care, gender-­ affirming therapies, and sexual health [2–5]. . Table  23.1 defines the common terms that have been employed in the care of this patient population.  

225 Ethics in Caring for Sexual and Gender Minority Patients

Definitions and Cultural Competency A basic understanding of common terms used in SGM communities is essential to discussion of specific clinical and ethical issues in caring for SGM persons (. Table  23.1) [2]. Many healthcare providers have limited or no training in LGBT health and express discomfort in their knowledge and competency in caring for SGM persons [6]. Limited exposure of clinicians to SGM persons may engender misconceptions, biases, or frank discrimination. Many of these factors may affect the quality and access to care that SGM persons receive from dermatologists [2]. The American Academy of Dermatology has adopted a position statement stating that “adequate training of medical professionals regarding the unique healthcare needs of LGBTQ/SGM people and ongoing research into best care practices are necessary to provide care that facilitates trust and resilience while ensuring the ability of LGBTQ/SGM individuals to thrive” [7].  

 ealth Inequity in SGM Persons H and Minority Stress Theory SGM persons experience multiple inequities in health outcomes and healthcare access. SGM subpopulations experience higher rates of HIV infection, sexually t­ ransmitted infections, cancers, depression, and suicide. The minority stress theory proposes that health inequities in SGM populations can be explained in large part by downstream effects of stressors induced by a hostile culture that results in stigma, prejudice, rejection and internalized homophobia/transphobia [8, 9]. Risk behaviors and poor physical and mental health outcomes may result in response to these stressors. SGM persons may also experience inadequate health insurance coverage, receive substandard care, or be outright denied care based on sexual orientation/heterosexism or gender identity/sexism [10]. Intersection with additional factors leading to health disparities, such as race/structural racism, serves to widen the health disparity gaps [11]. For example, trans-

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gender women, particularly transgender women of color, face some of the highest prevalence of HIV infection in the United States [12], in part due to higher rates of sex work, injection drug use, and other sexually transmitted infections [13]. Higher behavioral risks are contextualized by associated known increased risk factors such as higher rates of depression, attempted suicide, prior mental or physical abuse, experiences of gender-based discrimination, unstable housing, unemployment, incarceration, and lack of health insurance among transgender persons [13]. Many SGM persons have also had negative interactions with healthcare providers. Provider knowledge gaps surrounding gender-­ affirming treatments, such as hormone therapies and surgical procedures and their implications in dermatologic care, further hinders access to care for transgender and gender non-conforming persons. For example, some nonbinary patients have felt pressured into conforming to a binary transgender role to receive care [14]. Understanding and addressing the intersectionality of minority identities and structural barriers are required to provide SGM persons with equitable, quality and ethical dermatologic care. Some seek hormonal and/or surgical treatments as part of their gender affirmation, while others do not. It is important that providers do not make assumptions regarding their patient’s desires and plans for gender-­ affirming treatment. Providers should be responsive to their patient’s wishes and care should be individualized. There is a growing need for dermatologic care in patients navigating through their physical transformation. For example, androgenic hormone therapy affects the hair, resulting in hair loss and increased sebum production, leading to patterned alopecia and acne. Patients also seek dermatologic care for concerns of unwanted hair, post-surgical scarring or hyperpigmentation, and genital dermatoses. Aesthetic procedures using dermal fillers or neuromodulators can aide in the transformation of facial features. In addition, dermatologists treat various cutaneous manifestations of HIV infection, which is disproportionately prevalent in men who have sex with men and in

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transgender women. By addressing the health needs of transgender patients, dermatologists can help ongoing efforts to eliminate health disparities in SGM persons.

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>>Points of Emphasis 55 The minority stress theory proposes that health inequities in SGM populations can be explained in large part by downstream effects of stressors induced by a hostile culture that results in stigma, prejudice, rejection and internalized homophobia/transphobia. 55 Higher behavioral risks are contextualized by associated known increased risk factors such as higher rates of depression, attempted suicide, prior mental or physical abuse, experiences of genderbased discrimination, unstable housing, unemployment, incarceration, and lack of health insurance among transgender persons. 55 Transgender or gender non-conforming persons experience specific health needs related to gender transitioning. Gender affirmation is a complex and individualized process. 55 By addressing the health needs of transgender patients, dermatologists can help ongoing efforts to eliminate health disparities in SGM persons.

 linical and Ethical Issues C in Treating Acne in SGM Persons Severe acne is a common adverse effect of masculinizing testosterone therapy. Acne, especially in sexual minorities, is correlated with higher rates of depression, anxiety, and suicidal ideation [15]. Nearly one in four adolescents with moderate to severe acne have reported suicidal ideation, more than twice that of their peers [2]. Acne can result in permanent scars, especially with delays in treatment. Acne and acne scars impose profound impacts on self-esteem and self-image; our current healthcare system presents specific structural barriers for SGM persons that hinder acne treatment using isotretinoin [16].

Since the approval of oral isotretinoin by the US Food and Drug Administration (FDA) in 1982, it has remained the most clinically effective treatment against nodulocystic acne, producing long-term remission in many patients. It is effective in treating testosterone-­ induced acne in transgender men [17]. Currently, it is used in severe, nodulocystic, or refractory acne unresponsive to oral antibiotics. Isotretinoin has many side effects involving virtually all organ systems, and is a known teratogen associated with fetal craniofacial, cardiac, central nervous system, and other congenital defects when exposed in utero. Isotretinoin use has been associated with depression, anxiety, psychosis, and suicidal ideation, although it is unclear whether severe acne or isotretinoin was the ultimate inciting cause [18]. Some studies reported an increased risk of depression, attempted suicide, and suicide completion in patients taking isotretinoin, while others have suggested that isotretinoin treatment for acne may not be independently associated with higher risks for depression [19]. Conversely, some studies suggested that treatment of acne appeared to ameliorate depressive symptoms through improving selfimage [19]. Nevertheless, a black box warning has been issued by the U.S.  Food and Drug Administration stating that psychiatric disorders are a relative contraindication to isotretinoin use. This controversy makes it difficult for clinicians and patients to judge the relative risks and benefits of isotretinoin treatment in those with psychiatric comorbidity. This may inadvertently create downstream systematic barriers – particularly for SGM persons with higher prevalence of body image and/or mental health issues – leading to disparities in care and worsening mental health issues. Moreover, due to the teratogenic side effects of isotretinoin, the FDA has implemented the iPLEDGE classification system aimed to minimize fetal exposure to isotretinoin. Individuals are required to enroll not only based on their childbearing potential but in conjunction with a binary gender, which poses significant challenges in classifying transgender and gender non-conforming patients. Transgender men on testosterone

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therapy may still be of childbearing potential, yet they are forced to be classified under “female of childbearing potential” further perpetuating psychological distress [20]. Dermatologists are faced with the ethical dilemma of classifying their patients into a category of male or female based on their sex assigned at birth even though the patient may identify with a different gender. Furthermore, patients enrolled under the category of “female of childbearing potential” are required to be on two forms of contraception. iPLEDGE recognizes abstinence with men as an acceptable form of contraception. However, when treating patients with pregnancy potential who do not report sex with men (or partners with male genitalia), clinicians must balance respect for the patient with non-maleficence and the potential risks of pregnancy. A person’s sexual orientation may not always indicate their sexual behaviors; for example, someone may identify as a lesbian and may still occasionally have sex with men. Providers should be aware of their misconceptions when counseling patients who have childbearing potential. Patients who are not properly counseled on the appropriate methods of contraception risk the deleterious effects of fetal exposure to isotretinoin. Forming assumptions of their patient’s sexual behaviors

based on their reported sexual o ­ rientation can violate the ethical principle of non-maleficence. >>Points of Emphasis 55 Severe acne is a common side effect of masculinizing testosterone therapy 55 Structural barriers to treatment with isotretinoin exist for SGM persons, particularly with the use of isotretinoin. 55 The black box warning regarding depression and suicidal ideation or behavior in patients taking isotretinoin and the prevalent coexistence of these comorbidities and body image issues in SGM patients create systematic barriers leading to disparities in care and worsening mental health issues. 55 Individuals on isotretinoin need to enroll in iPLEDGE based on their childbearing potential and their binary gender, in this case, their sex assigned at birth, regardless of the gender the patient identifies as. 55 In treating SGM patients who are of childbearing potential who do nor report sex with men, clinicians must balance respect for the patient and her autonomy with non-­maleficence and the potential risks of pregnancy.

Case Scenarios

Case #1 Ricardo is a 27-year-old gay man whom you have been treating for severe acne. His acne did not adequately respond to topical retinoids as well as multiple courses of oral and topical antibiotics with benzyl peroxide. He reports feeling depressed about his skin. Per clinical guidelines, you now consider isotretinoin treatment. You note that his past medical history is significant for major depressive disorder, which is currently controlled with 20  mg of sertraline daily. He reports no past or current suicidal ideation. You are concerned about weighing the medical benefits and risks of isotretinoin since major depressive disorder and other mental health diagnoses are listed as contraindications, although some studies suggest isotretinoin may

improve depressive symptoms due to self-image issues secondary to acne. Since SGM patients face higher risks of depression and lower healthcare access, you are also concerned about ensuring access to equitable care for patients in this health disparity population [16]. How should you proceed? A. Not offer isotretinoin treatment because any mental health disorder is an absolute contraindication to therapy. B.  Offer isotretinoin treatment because you know that treatment of acne can improve patient self-esteem and decrease depressive symptoms. C. Continue Ricardo’s current acne regimen with an oral antibiotic and a topical retinoid cream.

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D.  Refer Ricardo to a psychiatrist and mental health counseling before agreeing to start isotretinoin therapy.

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 ase #1 Analysis C Treatment of severe acne in a patient with a personal or family history of psychiatric disorders is not an absolute contraindication to isotretinoin. Although the FDA has issued a warning for psychiatric disorders and suicide risk associated with isotretinoin treatment, there are also studies suggesting its benefits in improving depression symptoms. In this case, it is important to respect the patient’s autonomy in making an informed decision balancing the benefits and risks of treatment. Alternatives to isotretinoin should be considered and undertaken first, but isotretinoin should not be categorically denied to SGM patients with refractory acne without considering its impact on mental distress. Given the patient’s history of co-morbid depression, the physician must carefully weigh the benefits and risks. Notably, mental health disorders such as depression, anxiety, and suicidal ideation are more common in SGM populations compared to non-SGM populations. The physician should practice patient-centered care and consider each patient and their circumstances on an individual basis. Referral to a mental health specialist may be the appropriate next step. Ricardo is under psychiatric care and his depression is well-controlled on antidepressant medication. In this case, offering isotretinoin in consultation with the patient’s psychiatrist is reasonable. Depression monitoring using Patient Health Questionnaire-9 (PHQ-9) has also been proposed to assist dermatologists in monitoring for mood changes. Referral to a psychiatrist alone would not specifically address his main concern of severe acne. Delay in isotretinoin treatment (and potential mental health benefits from improved acne severity) must be balanced against the risks of worsening mental health from isotretinoin, particularly for patients at higher risks of suicide, such as those with a history of psychiatric hospitalization, suicidal ideation, or suicidal attempts.

Acne can cause severe psychological distress and mood disorders, including depression. Ricardo reports having low esteem related to his acne and treatment of acne may improve self-esteem and social interactions. Denying SGM patients, who have a higher baseline prevalence of depression, may perpetuate skin health disparities by denying patients efficacious acne treatment. Multidisciplinary care between dermatologists and mental health providers will enable both mental health treatment as well as provide acne treatment. Case #2 Chris, a 17-year-old non-binary adolescent, presents to your dermatology clinic accompanied by Chris’s mother. Chris prefers they/them/ their pronouns. Chris wishes to speak with you privately about facial feminization treatments to achieve a physical appearance that is congruent with Chris’ gender identity. Chris was assigned a male sex at birth and does not identify as male or female. Chris has been receiving feminizing hormone therapy but is not interested in genderaffirming chest or genital surgeries; however, Chris wants to have more feminine facial features. Chris stated that friends have gotten facial injections without the need for parental consent; some of them have received these treatments at “filler parties”. Chris hopes that you could augment and feminize the cheeks, lips, and jawline using dermal fillers. You are aware that gender dysphoria in transgender and non-­binary youth leads to numerous physical and psychosocial health risks and warrant medically necessary treatments. You are also aware of the potentially disastrous consequences from illicit filler injections. As you speak with Chris, you consider the age of consent for cosmetic procedures and potential adverse outcomes of illicit injectables that Chris may seek otherwise [21]. How should you proceed? A. Not offer facial injections because the patient is a minor and performing facial transformation procedures on minors is unethical. B. Offer cosmetic injections immediately to prevent the patient from seeking

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illicit and harmful silicone or other filler injections at “filler parties”. C. Discuss the risks, benefits, and alternative options of facial injections for facial feminization and offer the treatment if Chris suffers from gender dysphoria and if both the patient and the parent provide informed consent D. Counsel the patient on the dangers of illicit silicone or other filler injections and delay injections until the age of 18.

 ase #2 Analysis C Respect for autonomy obliges physicians to counsel patients and to make healthcare decisions collaboratively under the principle of informed consent. Patients have the right to have their gender identity, gender expression, and sexual orientation respected by healthcare providers. The decision of transgender or nonbinary patients to proceed with gender-affirming procedures should be respected. The transgender youth population are at a particularly high risk of engaging in risky health behaviors. Patients who suffer from gender dysphoria experience significant psychological distress possibly causing poor long-term mental health. Timely treatment of gender dysphoria is the ethical course of action. This is especially true in providing treatments that are not permanent if the patient is underaged. The current World Professional Association for Transgender Health Standards of Care, version 7 does not explicitly provide guidance regarding gender-affirming dermatologic procedures, such as facial fillers [22]. For other partially reversible interventions, such as feminizing or masculinizing hormone therapy, adolescents with gender dysphoria diagnosis may be eligible to begin treatment, preferably with parental consent. Ideally, treatment decisions should be made with the adolescent patient, the family, and the treatment team. However, in cases when the parents do not provide consent to the patient’s gender-affirming treatment due to their disapproval of the patient’s transgender status, the adolescent patient’s autonomy

may be violated if the patient otherwise has capacity for decision making [21]. If the patient is deemed to have medical decision making capacity by a mental health provider, provision of this reversible treatment in the absence of parental consent may be ethically justified on a case-by-case basis, although financial barriers may exist. Many transgender or gender non-­ conforming patients are limited by financial and logistical barriers in accessing gender-­affirming surgeries and dermatologic procedures. Some transgender women have sought illicit fillers to sculpt a feminine appearance [23]. Illicit fillers aimed to contour the buttocks, hips, or face may be appealing because of lower costs. However, these injections often contain hazardous substances, and are commonly performed by unlicensed medical providers. Adverse effects of illicit injections are well described and include thromboembolism, cutaneous scarring, acute granulomatous pneumonitis, lymphadenitis, and death [24]. Barriers to care and healthcare disparities should be addressed on both the societal and the individual level. Regardless of the dermatologist’s personal stance on performing gender-affirming procedures at this moment, it is imperative that patients are counseled on the dangers of silicone injections. As physicians, we are also bound to the ethical principle of justice, which asserts that we must distribute medical treatments fairly and equitably. We must therefore be aware that the restriction of certain medical interventions may perpetuate the discrimination and marginalization of minority groups. Conversely, certain treatments may alleviate suffering due to discrimination and marginalization. Transgender and gender non-conforming patients are more likely to experience poverty, unemployment, and to be uninsured. These disparities greatly inhibit access to medical services. Dermatologists have a role in providing gender-confirming therapy according to individual needs and desires. Chris reports persistent gender dysphoria and wishes to have a procedure that will help align physical features

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with gender identity. It is crucial that Chris have a formal evaluation and referral from a mental health provider and that informed patient and parental consent be obtained. Withholding gen-

der-affirming procedures may perpetuate gender dysphoria, inadvertently create barriers to care and lead patients to seek harmful alternatives.

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ers to care and lead patients to seek harmful alternatives. However, dermatologists should In caring for LGBTQ/SGM patients, derma- practice patient-centered care and consider the tologists may face uncertain ethical territories. individual needs and circumstances of each Aligning their treatment with the principles of patient. All of these principles should be taken autonomy, justice, beneficence, and non-­ into account when navigating through an ethimaleficence can ensure a safe and accepting cally challenging encounter to prevent the practice setting for their patients. Autonomy potential for paternalism. In the course of actrequires that patients make their own health- ing solely based on beneficence, the provider care decisions based on self-determination of may make the presumption that their judgthought, will, intention, and action. Respect ment is correct and may justifiably override the for autonomy obliges providers to counsel patient’s decision. Dermatologists should be patients and to make healthcare decisions col- cautious in the pursuit of patient welfare in a laboratively under the principle of informed manner that does not interfere with a patients’ consent. Patients have the right to have their right to choose their medical treatment while gender identity, gender expression, and sexual still taking into consideration the potential for orientation respected by healthcare staff. In harm. The desired outcome is to create a relaaddition, the decision of transgender or non- tionship between providers and LGBTQ/ binary patients to proceed with gender-­ SGM patients characterized by integrity, digaffirming procedures should be maintained as nity, and mutual responsibility and respect. confidential by healthcare providers. The ethical principle of justice asserts that providers must distribute medical treatments fairly and References equitably. Providers must be aware that the restriction of certain medical interventions 1. National Institutes of Health Office of Extramural Research. Notice of Special Interest in Research on may perpetuate the discrimination and marthe Health of Sexual and Gender Minority (SGM) ginalization of minority groups. Providers Populations (NOT-MD-19-001). https://grants.­nih.­ gov/grants/guide/notice-files/NOT-MD-19-001.­ have a moral and ethical obligation to act for html. Accessed 24 May 2020. the benefit of their patients and at the same time, minimize harmful risks. Patients have the 2. Yeung H, Luk KM, Chen SC, Ginsberg BA, Katz KA.  Dermatologic care for lesbian, gay, bisexual, right to receive equitable, nonjudgmental, and and transgender persons: terminology, demographaffirmative healthcare. Providing patients with ics, health disparities, and approaches to care. J Am Acad Dermatol. 2019;80:581–9. gender-affirmative healthcare can significantly improve quality of life and mental health. The 3. Yeung H, Luk KM, Chen SC, Ginsberg BA, Katz KA.  Dermatologic care for lesbian, gay, ­bisexual, principle of nonmaleficence is the moral obliand transgender persons: epidemiology, screening, gation of physicians to minimize harm to and disease prevention. J Am Acad Dermatol. patients. Physicians should provide medical 2019;80:591–602. 4. Boos MD, Yeung H, Inwards-Breland D. interventions that produce a net benefit over Dermatologic care of sexual and gender minority/ harm. Harm is observed in barriers to access LGBTQIA youth, part I: an update for the dermato care, stigmatization, discrimination, and tologist on providing inclusive care. Pediatr unnecessary or substantial risks. Withholding Dermatol. 2019;36:581–6. gender-affirming procedures may perpetuate 5. Kosche C, Mansh M, Luskus M, et al. Dermatologic care of sexual and gender minority/LGBTQIA gender dysphoria, inadvertently create barri-

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youth, part 2: recognition and management of the unique dermatologic needs of SGM adolescents. Pediatr Dermatol. 2019;36:587–93. 6. Obedin-Maliver J, Goldsmith ES, Stewart L, et  al. Lesbian, gay, bisexual, and transgender-related content in undergraduate medical education. JAMA. 2011;306:971–7. 7. American Academy of Dermatology. Position Statement on Sexual and Gender Minority Health in Dermatology. https://www.­aad.­org/Forms/Policies/ Uploads/PS/PS-Sexual%20and%20Gender%20 Minority%20Health%20in%20Dermatology.­p df. Published 2019. Updated March 4, 2019. Accessed May 24, 2020. 8. Meyer IH.  Prejudice, social stress, and mental health in lesbian, gay, and bisexual populations: conceptual issues and research evidence. Psychol Bull. 2003;129:674–97. 9. Hendricks ML, Testa RJ. A conceptual framework for clinical work with transgender and gender nonconforming clients: an adaptation of the minority stress model. Prof Psychol Res Pract. 2012;43: 460–7. 10. The Institute of Medicine Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities. The health of lesbian, gay, bisexual, and transgender people: building a foundation for better understanding. Washington, D.C.: Institute of Medicine; 2011. Available at https://www.ncbi.nlm.nih.gov › books › NBK64806 Accessed 28 November 2020. 11. Lopez N, Gadsden VL. Health inequities, social determinants, and intersectionality . Discussion Paper, Washington, D.C.: National Academy of Medicine; 2016. Available at https://nam.edu/ health-inequitiessocial-determinants-and-intersectionality/. Accessed 28 November 2020. 12. Baral SD, Poteat T, Stromdahl S, Wirtz AL, Guadamuz TE, Beyrer C.  Worldwide burden of HIV in transgender women: a systematic review and meta-analysis. Lancet Infect Dis. 2013;13: 214–22. 13. Becasen JS, Denard CL, Mullins MM, Higa DH, Sipe TA.  Estimating the prevalence of HIV and sexual behaviors among the US transgender population: a systematic review and meta-analysis, 2006– 2017. Am J Public Health. 2019;109:e1–8.

14. Liszewski W, Peebles JK, Yeung H, Arron S. Persons of nonbinary gender  - Awareness, visibility, and healthdisparities. N Engl J Med. 2018;379:2391–3. 15. Gao Y, Wei EK, Arron ST, Linos E, Margolis DJ, Mansh MD.  Acne, sexual orientation, and mental health among young adults in the United States: a population-based, cross-sectional study. J Am Acad Dermatol. 2017;77:971–3. 16. Yeung H, Chen SC, Katz KA, Stoff BK. Prescribing isotretinoin in the United States for transgender individuals: ethical considerations. J Am Acad Dermatol. 2016;75:648–51. 17. Turrion-Merino L, Urech-Garcia-de-la-Vega M, Miguel-Gomez L, Harto-Castano A, Jaen-­Olasolo P.  Severe acne in female-to-male transgender patients. JAMA Dermatol. 2015;151:1260–1. 18. Singer S, Tkachenko E, Sharma P, Barbieri JS, Mostaghimi A.  Psychiatric adverse events in patients taking Isotretinoin as reported in a Food and Drug Administration database from 1997 to 2017. JAMA Dermatol. 2019;155:1162–6. 19. Huang YC, Cheng YC.  Isotretinoin treatment for acne and risk of depression: a systematic review and meta-analysis. J Am Acad Dermatol. 2017;76:1068– 1076 e1069. 20. Katz KA.  Transgender patients, isotretinoin, and US Food and Drug Administration-mandated risk evaluation and mitigation strategies: a prescription for inclusion. JAMA Dermatol. 2016;152:513–4. 21. Waldman RA, Waldman SD, Grant-Kels JM.  The ethics of performing noninvasive, reversible genderaffirming procedures on transgender adolescents. J Am Acad Dermatol. 2018;79:1166–8. 22. Coleman E, Bockting W, Botzer M, et al. Standards of care for the health of transsexual, transgender, and gender-nonconforming people, version 7. Int J Transgender. 2012;13:165–232. https://doi.org/10.10 80/15532739.2011.700873. Published 2012. Accessed December 1, 2015. 23. Wilson E, Rapues J, Jin H, Raymond HF. The use and correlates of illicit silicone or "fillers" in a population-based sample of transwomen, San Francisco, 2013. J Sex Med. 2014;11:1717–24. 24. Dhingra N, Bonati LM, Wang EB, Chou M, Jagdeo J. Medical and aesthetic procedural dermatology recommendations for transgender patients undergoing transition. J Am Acad Dermatol. 2019;80:1712–21.

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Feet of Clay: The Impaired Dermatologist Brandon H. Krupp Contents Introduction – 234 Professionalism – 234 The Scope of the Problem – 236 Intervention – 236 Burnout – 237 Suicide – 238 Assessing the Physician – 239 Returning to Work – 239 Conclusion – 247 References – 247

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_24

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After completion of this chapter, the reader will be able to: 1. Understand the concept of professionalism in medicine and identify specific problems that affect physicians and can interfere with the safe and professional practice of medicine. 2. Recognize the signs of burnout and identify steps to take to mitigate its effects on physician health and practice as well as identify barriers to intervention or treatment. 3. Understand the high rate of suicide among physicians and identify factors that contribute to its prevalence.

Introduction For centuries, physicians have held a lofty, responsible and even sacred place in our world. Respected and venerated, they are expected to care for others in society in a compassionate and skillful way. Most of us have as much trust in our physicians as we have in anyone and we invite them into the most sacred part of our experience. Especially at times where one’s health concerns are literally a matter of life and death, one’s doctor can be the most powerful figure in one’s life. We have a need to see our doctors as unfailingly competent, sane, ethical and above reproach. Unfortunately, the idealized figure of the physician is a powerful one, coming not just from patients, families and society (e.g., accrediting agencies, regulators, insurance companies), but also from physicians themselves [1]. These expectations, arguably part of the fabric of medicine are internalized early on as physicians develop their professional identities and almost certainly contribute to burnout, substance abuse and dependence, and bad behavior. The practice of medicine involves stressful and demanding work, often over long hours, and frequently performed with the knowledge that one’s actions may have potentially life-­ changing consequences [2]. This is in addition to having to cope with the usual stressors of life

outside of medicine that everyone experiences. Furthermore, medicine’s managed care environment, dwindling resources, diminished compensation, and litigious practice climate, coupled with increasing limits on physician autonomy have led to increased stress, decreased professional satisfaction and in some, disruptive behavior [3–6]. In addition, doctors are vulnerable to the same diseases, imperfections and flaws as everyone else. External demands and pressures combined with internalized high expectations have made today’s physicians especially susceptible to burnout, depression, anxiety, fatigue, cardiovascular disease, substance abuse and dependence, disability, fractured interpersonal relationships and suicide [1, 6–10].

Professionalism Few would argue with the assertion that medicine is a profession, although defining “a profession” can be rather challenging. Three features common to the notion of professionalism are extensive and lengthy specialized education, training that involves a significant intellectual and scholarly component, and providing a necessary and valuable contribution to society [11]. Professions often have a process of self-regulation through licensing or certification, and they commonly have organizations made up of members of the profession. There is also generally speaking a sense of autonomy in the work of the professional. While not absolute, this autonomy is important in understanding the role a professional has in society. Physicians, for example, are expected to exercise their independent clinical judgment on a regular basis, though this is expected to be done within certain, often specific, professional guidelines [11, 12]. There are some who argue that a profession has a normative feature as part of its inherent design. That is, members of a profession should be expected to behave in certain ways because they are members of that profession. Pirsig [13] has described three normative principles, including that services should be given to those who need them, that the ser-

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vices should be designed in the public interest, and the profession itself should be the sole arbiter of the way in which the first two principles are accomplished. >>Points of Emphasis 55 Three features of professionalism are extensive and lengthy specialized education, training that involves a significant intellectual and scholarly component, and providing a necessary and valuable contribution to society

Struggling with the notion of professionalism in medicine and working to paint a picture of the virtuous and ethical physician, focused on the compassionate, just and prudent healing of patients is necessary in order to address the problem of impaired physicians. This is because a significant feature of professionalism is the idea of self-regulation. Members of a profession are given autonomy and have unique expertise. In return, they are expected to behave morally and ethically in the interests of the patient and to police their own regarding incompetent or unethical behavior. Professional status may confer some privileges upon physicians, but not limitless freedom. Autonomy and collegial respect, as important as they are to the professional image of the physician, cannot come at the expense of the patient [14]. Physicians must have the humility to be honest with themselves and society about their own fallibility and the limits inherent in the art of practicing medicine [15]. A strong professional self-concept must come with the courage to consistently and consciously act in the patient’s interest in the most virtuous and principled way possible and to expect one’s colleagues to do the same. Intellectual honesty, beneficence and prudence call for not only making clinical decisions in situations of stress and uncertainty, but also in understanding the limits of medicine and knowing when a fellow physician’s behavior has become so impaired or compromised that he or she is no longer acting from a trust covenant in the interests of the patient. The self-policing nature of the medical profession requires that all physicians are honest with themselves and their colleagues when the behavior of a physi-

cian has become so self-­interested or exploitative that it is harmful or potentially harmful to a patient. To neglect to maintain our own fitness to practice is to abandon our “societal contract” as physicians [16]. Professional self-regulation of physicians is far from perfect. Physicians find it hard to ask for help or assistance for their own health problems or don’t come to the attention of treatment providers for a variety of reasons [1, 14, 17]. Furthermore, the help they need may be hindered by the presence of a significant psychiatric illness or significant character pathology [9, 18–20]. While physicians have been very good at accepting their own advice about cigarette smoking and its risks over the last few decades (demonstrating a drop in mortality due to cardiovascular illness) [9, 21, 22]. they have shown less acumen when it comes to managing stress, depression and substance abuse. Historically, licensing boards had assumed that oversight of physicians had been given by the government to the medical profession itself, with the evaluation of physicians and their behavior being the sole purview of state medical specialty societies. However, because medical societies have increasingly devoted their limited resources to broader political and patient advocacy agendas, their role in the enforcement and discipline of unacceptable physician behavior has become much more limited [3]. This led to the delegation of authority to medical licensing boards that have been primarily made up of physicians, although in recent years, there has been increased representation by non-physician members [23]. While one might assume that physicians on the board might be sympathetic to the plight of their colleagues who suffer from mental illness or addiction, the truth is that these physicians’ feelings about their colleagues who suffer from these disorders are reflected in the general attitude of the profession toward such problems. Physicians tend to be uncomfortable talking with patients about psychiatric disorders, mood issues or suicidal ideation so their inability to talk about it among themselves or to notice when a colleague is suffering from depression or may be suicidal is not surprising [1].

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>>Points of Emphasis

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55 The self-policing nature of the medical profession requires that all physicians are honest with themselves and their colleagues when the behavior of a physician has become so self-interested or exploitative that it is harmful or potentially harmful to a patient.

The Scope of the Problem Physicians have an incidence of substance abuse that varies in the literature, but consistently is reported at between 10% and 15% [18, 24]. The prevalence reported in the literature varies substantially but can reach as high as 15%. Getting precise figures for the problem is difficult for several reasons. Physicians are concerned that their behavior could lead to disciplinary action and so are secretive about their use. Additionally, physicians may seek treatment in a secluded or private area to escape the attention of their colleagues or patients [25]. Additionally, many physicians are simply not identified as having a problem and so are not referred to treatment [17]. The importance of identifying physicians with substance use disorders cannot be underestimated. In one study, physicians diagnosed with alcohol abuse or dependence were more likely to report that they had committed a medical error in the past 3 months [26]. In another study, suicidal ideation had been experienced in the last 6 months by nearly 9% of physicians with alcohol abuse or dependency [26]. Alcohol abuse or dependence is associated with emotional distress and known characteristics of burnout such as emotional exhaustion and depersonalization. Alcohol abuse or dependence are strongly correlated with depression, suicidal ideation, a lowering of career satisfaction and diminished quality of life [26]. Female physicians suffer from substance use disorder at a rate higher than their male counterparts [26]. Two recent studies showed that female surgeons and physicians struggle with work-home conflicts which themselves are associated with depression, burnout and abuse of alcohol [27, 28].

Alcohol abuse or dependence is strongly and independently associated with specialty. For example, Oreskovich and colleagues found that when compared to internal medicine, dermatology and orthopedic surgery each had odds ratios roughly twice as large [26]. Several studies have confirmed the higher rate of physician suicide when compared to that of the general population as well as the association between depression and taking one’s life [1, 9, 29, 30]. When cause of death of physicians is looked at, suicide represents a higher proportion than one would expect. Women physicians in particular, appeared to be vulnerable to suicide [31, 32]. Specific data for the risk or incidence of suicidal ideation or behavior in dermatologists are not available, but there is no reason to suspect that dermatologists are at higher risk than their colleagues in other specialties. Issues involving substance use and mental illness can begin early in a physician’s career. Consensus panels have found that beginning as early as medical school and residency, physicians have a deplorable lack of attention to treatment for mental illness [33]. “Problem residents” exist across all programs and specialties and have the potential of threatening the functioning of a training program and can have a negative impact on the professional development of other trainees [34–36]. >>Points of Emphasis 55 When cause of death of physicians is looked at, suicide represents a higher proportion than one would expect. Women physicians in particular, appeared to be vulnerable to suicide. 55 Stigma remains a significant barrier to accepting treatment but also to identifying oneself as needing treatment.

Intervention It wasn’t until the middle of the twentieth century that alcohol and drug addicted doctors were thought to need not just discipline, but also rehabilitation programs, and that such programs ought to be created by the individ-

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ual state medical boards that licensed the physicians [20]. Relatively recently, in 1973, the AMA acknowledged as a matter of policy that physicians had an ethical duty to be aware of those colleagues whose impairment may make it impossible to “practice medicine adequately.” [37] According to the AMA’s second principle of medical ethics, physicians are ethically obligated to report an impaired physician or one who may be “deficient in character or competence.” [12] >>Points of Emphasis 55 According to the AMA’s second principle of medical ethics, physicians are ethically obligated to report an impaired physician or one who may be “deficient in character or competence.”

Physicians’ concerns for colleagues in the United States led to the “impaired physician movement,” which has evolved over the last four or five decades into the widespread creation of Physicians’ Health Programs (PHPs) in all 50 states. PHPs can be a confidential resource for physicians to self-refer or for colleagues or healthcare facilities to refer one about whom they have concern. Every state has some version of a PHP and the Federation of State Physician Health Programs (FSPHP) supports their educational and interventional activities. The Federation has a dual mission: to reach out to, treat and rehabilitate physicians who are ill and to ensure that this is done in a manner consistent with safeguarding the public [38]. This movement, which began with a focus on the assessment, treatment and monitoring of physicians with primarily substance abuse problems, has relatively recently expanded to include diagnosing and treating mental illnesses such as depression, bipolar disorder and anxiety as well as addressing problem behavior. The FSPHP has also worked hard to educate physicians, hospitals and licensing boards that illness and impairment are not synonymous terms. These two concepts exist on a continuum, with illness generally occurring before impairment (often years before). This concept is important to address the tendency by some medical boards to treat all

­ hysicians who are ill as if they are also autop matically impaired. It is important not to “reflexively” discipline a physician in need of treatment when there is no evidence of impairment [39]. The goal of treatment is to prevent impairment when possible, thus allowing the physician to practice and simultaneously protecting the public. >>Points of Emphasis 55 The PHP movement, which began with a focus on the assessment, treatment and monitoring of physicians with primarily substance abuse problems, has relatively recently expanded to include diagnosing and treating mental illnesses such as depression, bipolar disorder and anxiety as well as addressing problem behavior.

Early intervention by a PHP can give physicians an opportunity to prevent the worsening of their addiction or psychiatric illness, often at a time before their difficulties become public and they suffer losses in clinical privileges, strained family relationships, discipline by a medical board and financial hardship [40]. Intervention can prevent suicide [41]. In many states, a physician reporting another physician is legally protected from civil suit [20]. Some states have laws mandating the reporting of an impaired physician by his or her treating practitioner [42, 43]. The commitment to help physicians in need is not just limited to the US. Several countries such as Canada, Spain, the United Kingdom and France devote resources to assisting physicians with problems that impair their abilities to practice.

Burnout Until relatively recently, burnout induced by stress among physicians in practice, residents and medical students had generally not been given the attention it deserves. Yet, the prevalence of burnout among doctors in this country has risen to “epidemic proportions”, affecting more than half of this group [10]. Burnout can be defined as a syndrome that includes emotional exhaustion, depersonaliza-

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tion, and the feeling that one’s personal accomplishments are minimal and have little meaning. There are scales such as the Maslach Burnout Inventory that measure these areas [44]. Freudenberger has described 12 stages of burnout that develop over time and which are not necessarily sequential and with varying durations. These include the compulsion to prove oneself, working harder, neglecting one’s own needs, displacement of conflicts, revision of values, denial of emerging problems, withdrawal, obvious behavioral changes, depersonalization, inner emptiness, ­depression and burnout syndrome [45]. >>Points of Emphasis 55 Burnout can be defined as a syndrome that includes emotional exhaustion, depersonalization, and the feeling that one’s personal accomplishments are minimal and have little meaning.

Burnout is difficult enough to manage independent of one’s medical practice, but unfortunately burnout is associated with various destructive behaviors including interpersonal conflicts, substance use, and a poor quality of life [46, 47]. The physician suffers first but eventually, his or her emotional exhaustion, frustration and sense of limited personal accomplishment will affect their work, and performance may deteriorate while medical errors become more likely. Patient harm can result [48, 49]. While in many cases physicians may recognize burnout and on their own initiative, seek help, often it is family members, colleagues and friends who are the first to notice and who may be critical in steering the physician to the help he or she needs. Without such help, a burned-out physician may worsen, engaging in unpredictable behavior and possibly demonstrating psychiatric symptoms such as mood swings and angry outbursts. This situation can harm the functioning of the healthcare team and may lead to public sanctioning or discipline and even litigation [10]. Highest rates of burnout are found in emergency room physicians while the lowest rates are in those working in preventive medicine and occupational medicine [50].

Suicide Data show that doctors suffer from depression at double the rate of the general population with nearly 4  in 10 physicians affected. Each year, 400 physicians die by suicide [51]. The risk to the physician of untreated depression and suicide has been addressed by academics and professional organizations alike. The American Medical Association has weighed in on this with a consensus statement addressing depression and suicide in physicians as well as making recommendations for a national response to depression and suicide in physicians in training [52]. The high rate of suicide among physicians is, unfortunately, not new. While doctors have been successful in reducing their mortality from a plethora of causes of death, for example, smoking, they have not been able to remove suicide as a main reason that the practice of medicine is more life-threatening than activities found in the general population [53]. >>Points of Emphasis 55 Data show that doctors suffer from depression at double the rate of the general population with nearly 4 in 10 physicians affected.

Among all cases of mortality in the general population, only suicide is higher in physicians than nonphysicians [54]. Furthermore, while male physicians are 40% more likely than nonphysicians to die by their own hand, female physicians are more than twice as likely [55]. The high rate of physician suicide can be explained in part by the negative impact of burnout on physicians’ mental health [56]. Physicians must confront delayed gratification from the moment they begin training. Enduring stressful work with little immediate payoff, having limited time to devote to personal endeavors and frequent exposure to suffering and death can have dire psychological consequences [57]. Unfortunately, the culture of medicine tends to reward self-sacrifice and excessive time spent working while simultaneously demanding perfection [58]. In addition, physicians are generally reluctant to ask for help

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and may experience a variety of barriers to receiving needed care such as stigma, fear of discrimination in licensing and hospital privileges as well as limited time for or access to proper treatment [52]. >>Points of Emphasis 55 Enduring stressful work with little immediate payoff, having limited time to devote to personal endeavors and frequent exposure to suffering and death can have dire p ­sychological consequences. 55 Physicians are generally reluctant to ask for help and may experience a variety of barriers to receiving needed care such as stigma, fear of discrimination in licensing and hospital privileges as well as limited time for or access to proper treatment

When physicians do commit suicide, they most often use firearms, a method common to both physicians and nonphysicians. They are more likely than nonphysicians to use poisoning (likely due to greater access) and blunt force trauma. Physicians with completed suicides are much more likely to have barbiturates, benzodiazepines or antipsychotics found in their blood postmortem [59].

Assessing the Physician It is important to perform an appropriate and comprehensive assessment of physicians who are ill and who may be impaired. PHPs use such assessment to identify illness and plan for its treatment. Protecting the public is the guiding value that justifies and necessitates a fitness for duty evaluation of a physician [60– 62]. The assessment provides the basis of a comprehensive treatment and recovery plan that can be overseen and facilitated by the PHP.  In this way, the physician gets support and does not have to be the “doctor” responsible for his or her own care. However, it has been suggested that one problem with assessing physicians has been a paucity of practice guidelines designed to address the unique clinical and other issues at

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work in the assessment of doctors [61]. Assessments vary, as does the expertise of the evaluators [61, 63, 64]. Often, there are little empirical data upon which to base conclusions drawn from the evaluation, and these conclusions may not necessarily flow from the little data that are present [63, 64]. A new American Psychiatric Association (APA) guideline addressing psychiatric fitness-­ for-duty evaluations of physicians is thought to be a helpful contribution to the process, [65] although there are limits to practice guidelines in general [61]. Often, they represent collective opinion of experts in the field, rather than being empirically based. There are also problems with universal implementation. Wettstein has noted that even with new guidelines, it is unclear what is done in a fitness-for-duty evaluation and it is unclear how well those reading the evaluation can judge its quality [61]. Some may even see physicians evaluating physicians as the “guild” protecting its own [14, 66]. The choice of evaluator is also critical. Those who evaluate physicians must have experience and expertise in the assessment and treatment of physicians and be objective enough and composed enough to remain focused on the evaluation in the face of what could be significant resistance and (often narcissistic) character pathology [60, 61]. A variety of tests could be useful in assessment in monitoring of physicians, though there are no clear guidelines or recommendations for these [61]. These may include psychological or neuropsychological instruments, real-world skill assessments, symptom-­ validating tests, and laboratory tests [61, 67, 68]. There are also several tools that measure various aspects of physician burnout [10, 44, 69, 70].

Returning to Work Physicians who return to work after a period away for treatment or as a result of discipline encounter some unique issues involving treatment, licensure and employment, and often also face legal issues. This is where the PHP can play a significant or even pivotal role. The recovery plan, usually outlined in a recovery

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contract with the physician can address ongoing treatment issues, avoiding substance use, and monitoring compliance as well as ensuring steps to protect licensure. Most programs require written contracts, commonly covering a 5-year period and detailing mandatory supervision and treatment, including random urine drug screens, 12-step meeting (e.g. Alcoholics Anonymous and Narcotics ­ Anonymous) attendance, group and individual psychotherapy and compliance with psychiatric and other medication when necessary [38, 40].

Programs must have a top-down focus on physician health and wellbeing. If hospital and medical group leadership values programs to enhance physician wellbeing, it is more likely that the current culture will change [6]. >>Points of Emphasis 55 The PHP recovery plan, usually outlined in a recovery contract with the physician can address ongoing treatment issues, avoiding substance use, and monitoring compliance as well as ensuring steps to protect licensure.

Case Scenarios

Case 1 Dr. L is a senior partner in a large practice associated with an academic center and a professor of dermatology at the local medical school. Though not currently chair of the department, he has served in that role in the past. At a recent Christmas celebration for the department, he was observed to drink heavily throughout the evening. As the evening wore on, he became louder, more belligerent and began to slur his words. He was somewhat incoherent when he tried to provide a toast to the assembled group. Later, he drove himself home in his car. No one at the event confronted him or attempted to keep him from getting into his car at the end of the evening. A few days later, one of his partners tried to broach the evening’s events with Dr. L, saying that he was concerned about him. Dr. L became angry and defensive. He could not remember all the details of his behavior at the dinner but was aware that he had “probably had a little too much” and “may have said some inopportune things.” He insisted he had just “had a good time like everyone else.” Nevertheless, he reluctantly agreed to apologize to some of his colleagues. When approached by Dr. L, they each quickly “let him off the hook,” laughing with him and dismissing his behavior as just “blowing off some steam.” Case 1 raises several issues. It is not an uncommon phenomenon for a physician to witness a fellow physician behaving badly. Addressing impaired behavior in colleagues is challenging. Denial, rationalization and resistance are common in persons addicted to alco-

hol or drugs. In this case, there were several opportunities for colleagues to confront Dr. L as the evening wore on. Though it seems obvious that someone should have acted to help Dr. L, one could imagine that as he became more impaired, his colleagues might have believed that confronting Dr. L would be increasingly difficult and publicly embarrassing for everyone. It is easy to see the disincentives for anyone considering intervening with Dr. L.  It would take a bold individual to risk facing almost certain resistance to insist that Dr. L curtail his alcohol use, remove himself from the party or relinquish his car keys. There are difficulties in physicians confronting their colleagues about inappropriate behavior. It is difficult to report a colleague who may also be a friend. There may be concern that reporting someone or addressing it directly will inevitably lead to the fellow physician losing his job or license. Physicians may be worried that public awareness of a physician in trouble may diminish the reputation of medicine in general. There is also the understandable feeling for many that “there but for the grace of God go I.” There is a natural human tendency to minimize the import of certain negative behavior if one exhibits that behavior oneself. Other physicians who may participate in the “fun” of drinking or substance use may not feel that the ­behavior is wrong. It is much more likely that someone will abuse substances if readily available or if there is someone with whom to do so [14, 20].

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>>Points of Emphasis 55 It is difficult to report a colleague who may also be a friend. 55 There may be concern that reporting someone or addressing it directly will inevitably lead to the fellow physician losing his job or license. 55 There is also the understandable feeling for many that “there but for the grace of God go I.” However, the reluctance to refer an addicted or impaired colleague must be trumped in the end by the moral obligation we all have to ensure the well-being of patients. The use of alcohol and drugs (and the recovery from their use) can not only directly affect the physician’s cognition and performance, but the “addict behavior” of lying, secrecy and extraordinary concern for procuring and using the addictive substance can have a variety of negative impacts on his “sober” behavior as well. While the impaired colleague might argue (quite possibly truthfully) that he has “never been intoxicated” or otherwise impaired while treating a patient, the threat to patient well-being is obvious. It is unlikely that the physician’s patients will consistently get the full attention and focus necessary to ensure that he or she is indeed promoting their health and well-being. It is impossible to expect patients to protect themselves in these circumstances; it is unlikely that the patients of an addict will even be aware of the addiction of their physician, much less be able to address it. This is a collegial responsibility. Of course, the impaired physician has a primary ethical obligation to address his or her addiction, including voluntarily seeking treatment and possibly suspending practice for a time to promote patient safety. Unfortunately, the nature of addiction makes it difficult, though not impossible to examine oneself frankly and honestly and ask for help. This case is particularly challenging because it was the senior partner who behaved badly. Addressing bad behavior that is clearly the result of drinking too much alcohol in a fellow physician who is a direct supervisor or in a posi-

tion of authority is dramatically more difficult. One may revere the impaired physician and find it hard to accept that he might be addicted or in need of treatment. The risk of punitive action on the part of the supervisor toward the intervening subordinate will also make many reluctant to confront the bad behavior. Further, there will be a strong unspoken tendency to want to minimize the event and allow the supervisor to save face. In this case example, even when Dr. L was persuaded to apologize to his staff for his behavior at the party, they were very quick to downplay the import of his actions and “let him off the hook.” This is part of the classic pattern of “enabling” that contributes to reinforcing inappropriate behavior and making it less likely that the addicted physician will see a need for treatment.

>>Points of Emphasis 55 The nature of addiction makes it difficult, though not impossible to examine oneself frankly and honestly and ask for help. In addition, it is worth noting that one might expect that persons in powerful positions would command the best care. The evidence shows that frequently the opposite is true. The so-called “VIP” patient more often than not gets worse care, in part because of the reluctance of those providing treatment to do the customary and appropriate thing for fear that it may be painful, difficult or not well received, but also because the behavior of some “VIPs” leads treatment staff to withdraw and avoid them [71]. Case 2 Dr. Q is a dermatologist in a multispecialty group practice associated with a large regional for-profit corporation. He is considered an excellent clinician and is noted for being quick and efficient in his patient encounters and technically gifted during procedures. He is personable and enjoys almost universal respect and affection from his colleagues and the program staff. In the last year, he has become noticeably stooped in his posture and slower in his gait. He seems more forgetful lately and has made mistakes in the

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names of some of the staff. He has developed a rhythmic 4–5 Hz tremor in his right hand. On a few occasions he has dropped an i­nstrument during a procedure. Whenever anyone brings up the subject of retirement, he is quick to laugh and say that he will “probably go during clinic rounds one day.” Case 2 highlights the challenge presented to all physicians as they age: to notice when their skills have diminished to the extent that they can no longer perform consistently and safely. The Hippocratic Oath asserts that physicians should not perform actions that they are not properly trained and skilled to perform, an admonition that both the American Medical Association (AMA) and American Academy of Dermatology codes have incorporated as well [72]. Nevertheless, it is difficult for each of us to judge our own competence. Taking a keen, dispassionate look at one’s own behaviors and skills, especially if such observation may lead to limitation or cessation of practice, is extraordinarily difficult. It might be easier to notice the diminution of technical performance in a colleague, but it could be as difficult to openly and directly address it with him as to confront oneself with this reality. The confrontation is made more difficult when the colleague is likeable, has contributed a great deal to the profession and does not want to stop practicing medicine. The American physician population is aging. In 2013, the American Association of Medical Colleges estimated that nearly 28% of the physician population was over 60, while the AMA estimated that 43% of dermatologists and a startling 73% of pulmonologists were over 55 years old [73]. While continuing to work as one becomes more senior contributes to the pool of experience, an increased knowledge base, and more resources for teaching and education, there exists the potential in this group for burnout and cognitive and physical decline [74]. There is some evidence that older physicians have a greater risk of being brought to the attention of licensing board than younger physicians. Studies have demonstrated that the longer one has been in practice, the more likely the risk of disciplinary action by a board, especially those in practice more than 20  years [75–77].

It is not clear whether this represents a greater overall (time) exposure to the possibility of complaints and disciplinary involvement, the deterioration of the physicians’ knowledge or skills, an as yet unknown aspect of physician performance associated with age or some combination of these factors. There is a dearth of studies addressing function and performance of aging physicians when compared to the literature on those who are addicted or psychiatrically ill [78]. Limited studies have tended to focus on the cognitive impairments found in aging doctors [79]. Aging is accompanied by neurodegenerative changes in the brain and associated somatosensory and functional decline [80]. One systematic examination by Pesiah and Wilhelm of 41 aging physicians (over 60  years of age) who were presented to the New South Wales (Australia) Medical Board’s Health Committee because of “potential impairment” during the period of January 2000–January 2006 found cognitive impairment in nearly 54% of those referred (albeit a select population), with 12% demonstrating frank dementing illness. A number of neuropsychological deficits were demonstrated, including decreased auditory memory and learning abilities, poor encoding and retention in memory of novel information after a short delay, slowed information processing, problems with planning and cognitive flexibility, difficulty dealing with complex or unusual problems and a tendency to be rigid and concrete in one’s thinking. Nearly half (48.6%) of these doctors were subjects of “low-level patient complaints” or poor performance in the 10 years prior to presentation to the committee. Researchers found a great deal of “work until you drop” thinking and a significant amount of denial of the impact the illness had on the physician’s career [78]. More attention to this population of ­physicians is needed. Given the lack of clear data and specific guidelines to know exactly when clinical performance is no longer up to par, physicians should be aware of the behavior of their colleagues who are aging. Recognizing the risk of subtle impairment does not mean that undue scrutiny is warranted, but rather

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physicians can be open to addressing concerns in a collegial way. A good place to start would be to make a referral to the local PHP. In this way, the process does not begin with discipline and the focus can be on getting the proper assessment before deciding if and how to proceed toward treatment or modifying one’s practice. Additionally, the more sensitized younger physicians are to this issue, the more likely it will be that they may notice changes in their own performance as they age and be able to either ask for an evaluative assessment or recognize in a more timely way when they are no longer able to practice medicine with the same proficiency.

>> Points of Emphasis 55 While continuing to work as one becomes more senior contributes to the pool of experience, an increased knowledge base, and more resources for teaching and education, there exists the potential in this group for burnout and cognitive and physical decline. 55 Studies have demonstrated that the longer one has been in practice, the more likely the risk of disciplinary action by a board, especially those in practice more than 20 years. Case 3 Dr. Y is a senior Mohs surgeon on the academic service at a teaching hospital associated with a not-for-profit corporation that includes an additional private hospital and a few multispecialty outpatient centers. The corporation has had difficulties staying in the black over the past 5 years because of losses at a number of outpatient facilities. Dr. Y is considered a giant in his field, known for a variety of surgical innovations developed at that hospital over the years. He is a “workhorse,” performing more Mohs surgeries and bringing in more revenue than any other dermatologist (and most other specialists) in the corporation. However, he is consistently curt and dismissive with patients and staff. He is also a perfectionist and can be quite impatient with staff and colleagues who do not respond quickly to his demands. He routinely shouts at staff members and has thrown both instruments and

charts to emphasize his unhappiness. There is a high rate of turnover among the support staff in the practice. His partners (an internist, a rheumatologist and an allergist) prefer to avoid him whenever possible and are reluctant to confront him, even when asked to do so by the staff. Case 3 presents a common though vexing example of a physician who appears not to have a clear mental illness (depression, bipolar illness or the like) but has the kind of behavior that is destructive, demeaning to the work environment and, in the end, unacceptable. The socalled “disruptive physician” presents unique challenges to the model that deals with substance abuse and mental illness, all thought to be straightforward in their diagnosis and treatment. Physicians with impaired behavior are not necessarily disruptive, but frequently the two conditions coexist [81]. Physicians may use a variety of poor coping strategies, including temper tantrums, “taking it out on” subordinates or blowing up at colleagues [2]. The general idea of a “disruptive physician” is arguably not new. References to “pugnacious” and “quarreling” physicians appeared in the popular press as early as the late 1890s [82]. However, the more modern concept of the difficult physician was not to become apparent in the academic literature until more than a century later. The specific term “disruptive behavior” appears to have been first seen in the scientific literature some 25  years ago when Veltman, in addressing the concerns of hospital risk managers, sought to delineate specific examples of disruptive behavior [82, 83]. Pfiffering used the term in 1997 to address the management of difficult behavior, [4] and again in 1999 to define such behavior as it pertained to ones “quality of professional life.” [84] Not long after this, the AMA’s Council on Ethical and Judicial Affairs presented a report to the Bylaws Committee on “Physicians with Disruptive Behavior” that sought to define the problem and provide recommendations to address it [85]. One could argue that prior to the current understanding of this concept, society bestowed upon physicians a position that held them to be so thoroughly “right” and above reproach in matters of medicine and patient care that they would

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never be challenged. Nurses, colleagues and patients were all supposed to just “tolerate” rather than confront an imperious or badly behaving physician with the details of his or her unprofessional and inappropriate conduct. The last two or three decades have seen the growth of independence and expertise of nonphysician specialties (such as nurses and physician assistants), arguably contributing to an evolving ethos which challenges the antiquated perception that “the doctor is always right.” However, in the current health care delivery system, with its complex insurance and reimbursement structure, physicians in certain specialties or with unique skills may be seen not only as providing enhanced and state-of-the-art care to patients, but also as being so necessary to the survival of the hospital or healthcare system that disruptive behavior may be rationalized or even ignored. Physicians who are responsible for a significant portion of a hospital’s or practice’s revenue may be given a wide berth so as not to lose them and thus jeopardize the fiscal health of the institution. This can create a situation where the “tail wags the dog.” The primary focus is on the monetary bottom line which then may effectively redefine what is considered acceptable behavior in the health care workplace. In the example above, Dr. Y. is a difficult and challenging physician with whom to work. He has a long history of disruptive behavior that centers on having his needs met and being quite intolerant of others’ mistakes. His demands can be quite dramatic and appear to center around his need to have things his way and not to have his workday disrupted in any fashion. Dr. Y. feels quite free to express his unhappiness, especially toward people, with abusive language and threatening behavior. He has very little insight into the inappropriateness of his behavior. However, Dr. Y. is known as a “workhorse.” His productivity (and resultant revenue generated for the hospital) appear critical to the financial health of the entire corporation. His office staff and colleagues will be very reluctant to report his behavior to anyone. Even if they

did, there could be a reluctance on the part of corporate leadership to fully address Dr. Y’s issues (including their underlying causes if any) because of his monetary value to the institution. Inappropriate behavior begins early. Much as the presentation of psychiatric illness can begin in medical school, there is a significant amount of evidence that medical students who engage in problem behavior become residents who engage in problem behavior. Likewise, those physicians who have trouble managing their behavior or interacting with colleagues and staff while in training become the physicians who are disruptive once they begin their practice [86, 87]. Further, those students who are unable to identify their own weaknesses in the first half of medical school were more likely to be unprofessional during the last two clinical years of training [88]. Because of the significant role of the physician in the healthcare workplace, how one handles stress can have a significant impact on the healthcare team, and ultimately on patient care and safety [2, 81]. Disruptive or impaired behavior limits the good delivery of care: it weakens communication and reduces collaboration among colleagues and staff [2, 6]. Intimidation of staff, especially subordinates, can decrease the likelihood that they will want to share any information with the physician, much less information that may be central to the physician’s management of the patient’s illness. In the end patient safety suffers [2]. The physician has an ethical obligation to address such behavior, ideally in oneself, but also in colleagues to ensure that the promotion of patient health in a professional and respectful working environment is paramount. In addition, from a consequentialist perspective, improving the interpersonal and professional behavior of the physician leads to a better work environment for all and better patient outcomes and satisfaction. The fiscal climate of medicine today requires attention to the bottom line as never before. When focusing on the health of the physicians and their needs comes into potential conflict with the financial health of the hospital

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or practice, physicians must work to keep the health and wellness of colleagues the primary concern. Physician leaders in administrative positions can assist in this process by working to ensure that no physician becomes so financially important to the institution that behavior in need of support, attention and possible intervention goes unaddressed. It is no longer optional to address the problem physician. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO), has recognized the significant and deleterious effect such problematic physicians have on the healthcare environment and the delivery of medical care. They reviewed sentinel events (defined as “unexpected occurrence(s) involving death or serious physical or psychological injury, or the risk thereof ”) [89] in 2009 and found that disruptive and intimidating behavior by physicians leads to medical errors and preventable negative outcomes, while at the same time, diminishing patient satisfaction and increasing staff turnover. These data confirmed the importance of their 2001 mandate that all hospitals have policies that define inappropriate or disruptive physician behavior as well a system in place whereby all persons who come in contact with such physicians have the ability to report such behavior and to be sure that their concerns will be taken seriously by the hospital leadership [2, 90]. The AMA has also addressed disruptive physician behavior in its Code of Medical Ethics [12]. No one wants to confront a powerful physician, especially those who have little power themselves within the system or who may be beholden to the physician for their livelihood. Yet, it is the rank and file healthcare worker who often has the best and most first-hand knowledge of the behavior of the disruptive physician. While it is of course possible that specious complaints may be made against physicians in which their behavior may be incorrectly interpreted as being disruptive or abusive, the Joint Commission requires that such complaints, whether initiated by a member of the medical staff or the housekeeping staff, be taken seriously and investigated and addressed in a confidential manner.

>> Points of Emphasis 55 In the current health care delivery system, physicians in certain specialties or with unique skills may be seen not only as providing enhanced and state-of-theart care to patients, but also as being so necessary to the survival of the hospital or healthcare system that disruptive behavior may be rationalized or even ignored. 55 Those physicians who have trouble managing their behavior or interacting with colleagues and staff while in training become the physicians who are disruptive once they begin their practice. 55 When focusing on the health of the physicians and their needs comes into potential conflict with the financial health of the hospital or practice, physicians must work to keep the health and wellness of colleagues the primary concern. Case 4 Dr. Z is a dermatologist in a two-­dermatologist private practice in a small town where he has been for 20 years. Dr. Z has a variety of interests, including fishing, cooking and basketball, which he plays at the local recreation center. He has two high school-aged sons, who play on the local high school basketball team. Dr.Z loves to hunt and shoot skeet and is a member of the local gun club. He has an impressive collection of handguns, rifles and shotguns. Six years ago, to relinquish the administrative duties of running the practice, Dr. Z and his partner sold it to a national private equity-funded for-profit corporation. They were told nothing would change in the practice including their salaries. Since selling the practice, the number of patients in the schedule has steadily risen, requirements for various health measures have increased and he is forced to use an EMR that is clumsy and not intuitive. He finds himself compelled to complete records at home on nights and weekends. His salary was cut when he did not make productivity goals set by the organization. He is more irritable with patients. A member of his office staff overheard him mumbling to himself and caught the words, “I guess I am not much of a doctor anymore.”

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When his son recently said he wanted to be a physician, Dr. Z discouraged him, saying that “it’s not what it used to be.” He fishes less and misses his sons’ games frequently. He has stopped exercising and gained 15 pounds. He has three or four drinks at night instead of his usual one. His wife believes he is depressed and has heard him utter cryptic things like “why do I even bother anymore?” She is worried about Dr. Z but has not shared her worry with him. He recently told her that he was “so tired” that if he happened to “die in (his) sleep,” he didn’t “necessarily think that would be such a bad thing.” Case 4 gives a clear example of a physician experiencing burnout. Dr. Z has, over the last six years, experienced several changes in his life, some he wanted and many he did not. When his practice was bought by the private equity corporation, the clinical and documentation requirements asked of Dr. Z grew and his autonomy diminished. He had less control over the amount of time he spent with his patients, feeling that he had to see more patients in less time. The documentation demands from the corporation grew even as he struggled with an electronic medical record that was burdensome. The time he used to take for leisure activities that were rewarding for him has been replaced by paperwork that takes him well beyond his standard workday and interferes with participating in those aspects of his life that he found so fulfilling. He is more irritable with patients and it’s possible that he could be making mistakes he is not even aware of. His burnout and despair have colored his view of medicine in general. He no longer sees his profession as worthy of lifelong commitment. When his son told him that he wanted to be a doctor, rather than celebrating this, Dr. Z discouraged his son from pursuing that career. He is also demonstrating signs of depression that have been noticed by the people nearest to him, especially his wife. Even though he is still functioning and is not completely immobilized by a mood disorder, he is clearly experi-

encing lack of motivation, reduced interest, increased irritability and hopelessness; all are suggestive of depression. Furthermore, he is at significant risk of suicide. His self-image as a physician has taken a beating. His cryptic comments about “why even bother” point to a hidden despair and hopelessness. While he has not openly expressed a desire to die, he has said that death would not be unwelcome. He does not experience much joy in any facet of his life. His stressors continue to weigh him down but he has no obvious remedy that will take pressure off of him and allow him to feel good about himself as a doctor and experience the positive aspects of practicing medicine. Dr. Z is also abusing alcohol which will only worsen his depression and impair his judgement. Alcohol abuse (and possible dependence) only increases the risk that he will attempt to take his own life. In addition, his extensive gun collection gives him ready access to the most often used means of self-harm. More worrisome still is the fact that despite many noticing his mood and behavioral changes as well as his provocative and despair-filled comments, no one has yet taken any step to intervene in any way or even to express concern. Dr. Z needs immediate attention. He should have a psychiatric evaluation to clarify his diagnosis and recommend a course of treatment. While uncomfortable for those closest to him, like his wife, sons and partner, intervention is needed to prevent Dr. Z from engaging in self-harm. Immediate action can prevent suicide and allow appropriate treatment. He needs an opportunity to address his needs openly and directly in order to gain insight into why his behavior and feelings about this practice have changed. Appropriate treatment of depression is also critical. As his mood improves, Dr. Z, his family and his treatment team can develop a plan that can address his frustrations and allow him to change what he can in his environment to minimize stress and maximize health.

247 Feet of Clay: The Impaired Dermatologist

Conclusion Physicians suffer from the same shortcomings that their patients do. Despite society’s lofty expectations, all have feet of clay. No human is perfect, and all physicians are vulnerable to physical and mental illness or addiction. The practice of medicine demands commitment and expertise and can be consuming and exhausting. Yet, physicians need not wear the mantle of perfection to do their jobs, nor must they live and work in the kind of silent isolation that prevents them from asking for help when needed or keeps them from taking the most basic steps to ensure that issues of mental illness, substance abuse and burnout are addressed in a timely way before the physician so disrupts his life and practice that he, the patient and the medical enterprise suffers unnecessarily. Physicians have an ethical obligation through a “covenant of trust” with their patients to use their knowledge, skill and expertise in a fair and balanced way and with the goal of healing their patients and preventing their exploitation. Impairment due to addiction, aging or by narcissistic and provocative behavior threatens to erode that trust and can lead to patient harm. Inappropriate or impaired physician behavior must be addressed by colleagues and should remain focused on the assessment and treatment of illness in the physician whenever possible. The physicians’ heath movement provides a non-­punitive, treatment and recovery-based alternative that can both help physicians and protect the public. Nietzsche admonished the physician to “heal thyself ” but physicians cannot heal themselves. They can instead accept that (to paraphrase Abraham Lincoln) “a physician who treats himself has a fool for a patient” and learn to recognize when treatment and support from others are the required prescription.

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3. Wall BW. Commentary: the clinical implications of doctors’ evaluating doctors. J Am Acad Psychiatry Law. 2005;33:89–91. 4. Pfefferling JH.  Managing the unmanageable: the disruptive physician. Fam Pract Manag. 1997;4:77– 92. 5. Murray A, Montgomery JE, Chang H, Rogers WH, Inui T, Safran DG. Doctor discontent. A comparison of physician satisfactiong in different delivery system settings, 1986 and 1997. J Gen Intern Med. 2001;16:f2–9. 6. Dunn PM, Arnetz BB, Christensen JF, Homer L.  Meeting the imperative to improve physician well-being: assessment of an innovative program. J Gen Intern Med. 2007;22:1544–52. 7. Williams ES, Konrad TR, Scheckler WE, Pathman DE, Linzer M, McMurray JE, et al. Understanding physicians’ intentions to withdraw from practice: the role of job satisfaction, job stress, mental and physical health. Health Care Manag Rev. 2001;26:7– 19. 8. Rollman BL, Mead LA, Wang NY, Klag MJ. Medical specialty and the incidence of divorce. N Engl J Med. 1997;336:800–3. 9. Center C, Davis M, Detre T, Ford DE, Hansbrough W, Hendin H, et al. Confronting depression and suicide in physicians: a consensus statement. JAMA. 2003;289:3161–6. 10. Rothenberger DA.  Physician burnout and Well being: a systematic review and framework for action. Dis Colon Rectum. 2017;60:567–76. 11. Bayles M. Professional ethics. Belmont: Wadsworth; 1981. 12. Council on Ethical and Judicial Affairs. Code of Medical Ethics. Chicago: American Medical Association;2017 13. MacIver RM.  The social significance of profes sional ethics. In: Pirsig ME, editor. Cases and materials on professional responsibility. St. Paul: West; 1965. 14. May W.  Professional ethics: setting, terrain and teacher. In: Callahan D, Bok S, editors. Ethics teaching in higher education. New  York: Plenum; 1980. 15. Gorovitz S. Doctor’s dilemmas: moral conflict and medical care. New York: Macmillan; 1982. 16. Grocott HP, Bryson GL. The physician at risk: disruptive behavior, burnout, addiction, and suicide. Can J Anesth. 2017;64:119–21. 17. Boisaubin EV, Levine RE. Identifying and assisting the impaired physician. Am J Med Sci. 2001;322:31– 6. 18. Skipper GE.  Treating the chemically dependent health professional. J Addict Dis. 1997;16:67–73. 19. Stoudemire A, Rhoades JM. When the doctor needs a doctor: special considerations for the physicianpatient. Ann Intern Med. 1983;98:654–9. 20. Baldisseri MR.  Impaired healthcare professional. Crit Care Med. 2007;35:S106–16. 21. Centers for Disease Control. Current trends smoking-related mortality decline among physicians  –

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38. Federation of State Physician Health Programs. Available at fsphp.org. Accessed November 8, 2020. 39. Public Policy Statement: physician illness vs. impairment: Federation of State Physician Health Programs. https://www.fsphp.org/assets/docs/illness_vs_impairment.pdf. Accessed November 8, 2020. 40. Bohigian GM, Bondurant R, Croughan J.  The impaired and disruptive physician: the Missouri physicians’ health program–an update (1995–2002). J Addict Dis. 2005;24:13–23. 41. Rakatansky H.  Physician suicide. N Engl J Med. 2005;353:1184–5. 42. Bismark MM, Morris JM, Clarke C.  Mandatory reporting of impaired medical practitioners: protecting patients, supporting practitioners. Intern Med J. 2014;44:1165–9. 43. Bismark MM, Matthews B, Morris JM, Thomas LA, Stuttert DM. Views on mandatory reporting of impaired health practitioners by their treating practitioners: a qualitative study from Australia. BMJ. 2016;open 6(12) e01198. 44. Maslach C, Schaufeli WB, Leiter MP. Job burnout. Annu Rev Psychol. 2001;52:397–422. 45. Fruedenberger HI.  Staff burnout. J Social Issues. 1974;30:159–65. 46. Shanafelt TD, Balch CM, Dyrbye L, et  al. Special report: suicidal ideation among American surgeons. Arch Surg. 2011;146:54–62. 47. Dyrbye LN, Massie FS, Eaker A, et al. Relationship between burnout and professional conduct and attitudes among US medical students. JAMA. 2010;304:1173–80. 48. Shafelt TD, Balch CM, Bechamps G, et al. Burnout and medical errors among American surgeons. Ann Surg. 2010;251:995–1000. 49. Williams PS, Manwell LB, Konrad TR, Linzer M. The relationship of organizational culture, stress, satisfaction and burnout with patient-­reported error and suboptimal patient care: results from the MEMO study. Health Care Manag Rev. 2007;32:203–12. 50. Shanafelt TD, Hasan O, Dyrbye LN, et al. Changes in burnout and satisfaction with work-life balance in physicians and the general US working population between 2011 and 2014. Mayo Clin Proc. 2015;90:1600–13. 51. Collier R.  Physician suicide too often "brushed under the rug.". CMAJ. 2017;189(39):E1240–1. 52. Center C.  Confronting depression and suicide in physicians: a consensus statement. JAMA. 2003;289(23):3161–6. 53. Aasland OG. Physician suicide-why? Gen Hospital Psychiatry. 2013;35(1):1–2. 54. Albuquerque J, Tulk S.  Physician suicide. CMA J. 2019;191:E505. 55. Schernhammer ES, Colditz GA.  Suicide rates among physicians: a quantitative and gender assessment (meta-analysis). Am J Psychiatry. 2004;161:2295–302.

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56. Khansa I, Janis J. A growing epidemic: plastic surgeons and burnout-a literature review. Plas Reconstr Surg. 2019;144(2):298e–305e. 57. Shanafelt T.  A career in surgical oncology: finding meaning, balance and personal gratification. Ann Surg Oncol. 2008;15:100–6. 58. Vogel L. Physician suicide: still shrouded in secrecy. CMAJ. 2016;188:17–8. 59. Gold KJ, Sen A, Schwenk TL.  Details on suicide among US physicians: data from the National Violent Death Reporting System. Gen Hosp Psychiatry. 2013;35:45–9. 60. Nye GS.  Psychiatric evaluation for diversion program candidates. Fed Bull. 1996;83:95–101. 61. Wettstein RM.  Commentary: quality improvement and psychiatric fitness-for-duty evaluations of physicians. J Am Acad Psychiatry Law. 2005;33:92–4. 62. Wall BW, Appelbaum KL.  Disabled doctors: the insurance industry seeks a second opinion. J Am Acad Psychiatry Law. 1998;26:7–19. 63. Nicholson RA, Norwood S. The quality of forensic psychological assessments, reports, and testimony: acknowledging the gap between promise and practice. Law Hum Behav. 2000;24:9–44. 64. Skeem JL, Golding SL, Cohn NB, Berge G.  Logic and reliability of evaluations of competence to stand trial. Law Hum Behav. 1998;22:519–47. 65. Anfang SA, Faulkner LR, Fromson JA, Gendel MH.  The American Psychiatric Association’s resource document on guidelines for psychiatric fitness-­ for-duty evaluations of physicians. J Am Acad Psychiatry Law. 2005;33:85–8. 66. Brodsky CM. Psychiatric aspects of fitness for duty. Occup Med. 1996;11:719–26. 67. Jansen M, Bell LB, Sucher MA, et al. Detection of alcohol use in monitored aftercare programs: a national survey of state physician health programs. J Med Licens Discipl. 2004;90:8–13. 68. Skipper GE, Weinmann W, Wurst FM. Ethylglucuronide (ETG): a new marker to detect alcohol use in recovering physicians. J Med Licens Discipl. 2004;90:14–7. 69. Demerouti E, Bakker AB.  The Oldenberg burnout inventory: a good alternative to measure burnout and engagement, handbook of stress and burnout in health care. New York: Nova Science Publishers; 2008. 70. Kristensen TS, Borritz M, Villadson E, Christensen KB. The Copenhagen burnout inventory: a new tool for the assessment of burnout. Work Stress. 2005;19:192–207. 71. Weintraub W. “The Vip Syndrome”: a clinical study in hospital psychiatry. J Nerv Ment Dis. 1964;138:181–93. 72. Meffert JJ. “I swear!” Physician oaths and their current relevance. Clin Dermatol. 2009;27:411–5. 73. Merritt Hawkins. The aging physician workforce: a demographic dilemma. Available at https://www.­

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hasc.­org/sites/main/files/link1mhawhitepaperaging.­ pdf. Accessed 9 Feb 2020. 74. LoboPrabhu SM, Molinari VA, Hamilton JD, Lomax JW. The aging physician with cognitive impairment: approaches to oversight, prevention, and remediation. Am J Geriatr Psychiatry. 2009;17:445–54. 75. Weycker DA, Jensen GA.  Medical malpractice among physicians: who will be sued and who will pay? Health Care Manag Sci. 2000;3:269–77. 76. Kohatsu ND, Gould D, Ross LK, Fox PJ.  Characteristics associated with physician discipline: a case-control study. Arch Intern Med. 2004;164:653–8. 77. Morrison J, Wickersham P.  Physicians disciplined by a state medical board. JAMA. 1998;279:1889–93. 78. Pesiah C, Wilhelm K. Physician don’t heal thyself: a descriptive study of impaired older doctors. Int Psychogeriatr. 2007;19:974–84. 79. Eva KW. The aging physician: changes in cognitive processing and their impact on medical practice. Acad Med. 2002;77:S1–6. 80. Pesiah C, Wilhelm K.  The impaired aging doctor. Intern Med J. 2002;32:457–9. 81. Brown SD, Goske MJ, Johnson CM.  Beyond substance abuse: stress, burnout, and depression as causes of physician impairment and disruptive behavior. J Am Coll Radiol. 2009;6:479–85. 82. Petrovic MA, Scholl AT. Why we need a single definition of disruptive behavior. Cureus. 2018;10(3):e2339. https://doi.org/10.7759/cureus.2339. 83. Veltman L. The disruptive physician: the risk manager’s role. J Healthc Risk Manag. 1995;15:11–6. 84. Pfifferling JH.  The disruptive physician: a qual ity of professional life factor. Physician Exec. 1999;25:56–61. 85. American Medical Association: Report of the council on ethical and judicial affairs. Physicians with disruptive behavior. Accessed 30 Dec 2019: http:// www.­disruptiveclinicians.­com. 86. Papadakis MA, Hodgson CS, Teherani A, Kohatsu ND.  Unprofessional behavior in medical school is associated with subsequent disciplinary action by a state medical board. Acad Med. 2004;79:244–9. 87. Papadakis MA, Teherani A, Banach MA, Knettler TR, Rattner SL, Stern DT, et al. Disciplinary action by medical boards and prior behavior in medical school. N Engl J Med. 2005;353:2673–82. 88. Stern DT, Frohna AZ, Gruppen LD. The prediction of professional behaviour. Med Educ. 2005;39:75–82. 89. Joint Commission Sentinel Event Alert: behaviors that undermine and issue of safety: Joint Commission on Accreditation of Healthcare Organizations. www.­ jointcommission.­org/sentinel_event_alert_issue_40_ behaviors_that_undermine_a_culture_of_safety/. Accessed 9 Feb 2020. 90. Youssi MD.  JCAHO standards help address disruptive physician behavior. Physician Exec. 2002;28:12–3.

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The Ethics of Maintenance of Certification in Dermatology Benjamin K. Stoff Contents Introduction – 252 Utilitarian Perspectives on MOC – 253  randfathering – 253 G Redundancy – 253 Relevancy – 254 Cost-Effectiveness – 254

Justice and Duty Perspectives on MOC – 255 Practical Considerations – 255 Future Directions for MOC – 255 References – 257

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_25

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nnLearning Objectives

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..      Table 25.1  Components of MOC and associated requirements for dermatologists

1. Explain the ethical arguments in favor of participation in maintenance of certification (MOC) in dermatology. 2. Explain the ethical arguments against participation in MOC in dermatology. 3. Describe potential reforms to MOC programs that may better achieve the goals of enhanced physician performance and patient outcomes.

>>Points of Emphasis 55 Maintenance of certification (MOC) represents an effort by the American Board of Medical Specialties (ABMS) to establish on-going competency of physicians, including dermatologists. 55 Ethical arguments in favor of MOC focus on the duty of physicians to engage in career-long learning, practice improvement and self-regulation (deontology and professionalism). 55 Ethical objections to MOC center on lack of utility associated with the program, in terms of patient outcomes, cost, redundancy, and irrelevancy. Libertarian critics of MOC also view the program as an affront to professional and individual liberty (autonomy).

Introduction Few topics in contemporary medicine generate as much impassioned debate as maintenance of certification (MOC) [1]. The program was enacted by the American Board of Medical Specialties (ABMS) member certifying boards, including the American Board of Dermatology (ABD), in 2000, and the first cohort of dermatologists entered the program in 2006 [2]. Currently, there are four components of MOC, including professional standing, self-assessment, cognitive expertise, and practice improvement (. Table 25.1) [3]. Distinct from primary certification, MOC emphasizes ongoing learning and demonstration of competency [4]. Its primary goal is to improve patient care by providing a system that assures the  

Component of MOC

Associated requirements

I. Professional standing

Unrestricted medical license and clinically activea

II. Self-assessment

300 self-assessment credits; patient safety course

III. Cognitive expertise

Closed-book examinationb

IV. Practice improvement

Participation in a practice improvement module

aClinically

active: patient care delivered in past 12 months bIncludes one general dermatology module and one subspecialty module. Potential for more piecemeal and longitudinal assessment in the future (see text)

public and medical professionals about the safe, high-quality, patient-centered care delivered by certified physicians. For supporters of MOC, participation in the program represents commitment to professional duties, including self-regulation, lifelong learning and improvement in clinical care [5–7]. Those who oppose MOC object primarily on utilitarian grounds. Specifically, they raise concerns about the policy of allowing voluntary participation in the program by older physicians, redundancy with continuing medical education (CME) programs, lack of relevancy regarding contemporary practice environments and specialized scopes of practice, cost effectiveness, and time burden (. Table  25.2) [8, 9]. Although the divide between opposing sides often seems vast, survey data suggest that the nature of the opposition to MOC is more practical than theoretical [10]. Specifically, among internists who have opted out of the program, the vast majority still believes that it is important for physicians to be certified. Their objection focuses on the requirements that the program has created for establishing ongoing certification.  

253 The Ethics of Maintenance of Certification in Dermatology

..      Table 25.2  Ethical arguments about MOC In favor of MOC Professional duties:   Life-long learning   Practice improvement   Self-regulation

Potential to improve patient outcomes

Against MOC Lack of utility: Limited patient outcome data   Redundancy with CME   Irrelevancy to specialty practices   Cost and time burden  

Regulatory over-reach

Compliance with potential healthcare system requirements

This chapter will unpack ethical perspectives about MOC. It will present arguments against MOC followed by counterarguments from supporters of MOC.  The chapter will then present a set of proposed reforms that may allow the program to better accomplish its goals and conclude with a case and associated discussion to ground the ethical discourse in real world decisions about participation in MOC by dermatologists.

Utilitarian Perspectives on MOC Grandfathering As discussed in the Foundations section of this book, utilitarian policy seeks to promote the most good for the most people. Such policy often focuses on groups that would benefit most from a given intervention. A central rationale for MOC rests upon data showing that the cognitive ability of physicians wanes with age and time in practice [11, 12]. Therefore, utilitarian theory would support MOC programs’ required inclusion of, perhaps even emphasis on, late-career physicians because expected declines in cognitive skills

leave them with the most to gain from continuous learning and improvement. However, since the outset of MOC, physicians who underwent primary certification prior to adoption of MOC requirements by their member board (“grandfathers”) are not required to participate in the MOC program to remain certified [1]. For dermatologists, lifetime certification was granted to anyone achieving primary certification prior to 1991. This provision was publicized to grandfathers and nongrandfathers from the outset of MOC. Leaders at ABD acknowledge this flaw in policy, suggesting that aging dermatologists may benefit most from participation in MOC [5, 13]. Lifetime certificate holders can still voluntarily participate in MOC. Indeed, many have encouraged them to do so [5, 7, 9]. However, voluntary participation remains quite low. For example, less than 10% of dermatologists with lifetime certification voluntarily enroll in MOC, and even fewer internists chose to do so [8, 13].

Redundancy Utility is closely aligned with efficiency. As a maximizing principle, utilitarian theory strongly discourages redundancy in interventions. In the realm on medical education, CME programs represent another potential commitment to lifelong learning on the part of physicians. According to the CME paradigm, participants assess themselves for educational needs and then freely choose programs to fulfill those needs. This system allows tailoring of educational content to the particular, ongoing educational needs of physicians, many of whom may have highly specialized practices. Indeed, some have argued that, with reforms to better align CME programs with adult learning theory, CME can usurp the role of MOC in demonstrating the commitment to lifelong learning so essential to medical professionalism [14]. Supporters of MOC criticize CME for being far too passive to promote durable knowl-

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edge gains and practice improvement [13]. Indeed, research on clinical outcomes associated with CME have not shown improvement in physician knowledge or performance [13]. Further, physicians are generally poor at assessing their own knowledge gaps, supporting the need for more uniform and centralized assessments, like those associated with MOC [13].

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Relevancy For reasons similar to those cited above, utilitarianism generally does not tolerate irrelevancy. Opponents of MOC have heavily criticized the program because of lack of relevancy, both in terms of the content of assessments and the environments in which assessments are carried out. Indeed, irrelevancy was a major barrier to participation in MOC by internists, particularly subspecialists, according to survey data [10]. Dermatologists, especially those with predominantly aesthetic practices, voice similar concerns [15]. Specifically, dermatologist with relatively narrow scopes of practice question the value of assessments based on broad knowledge bases that have limited implications for their practices. The ABD has responded to this concern by offering MOC content tailored to subspecialists in, for example, dermatopathology, procedural dermatology, and pediatric dermatology [16]. Despite this appeal to dermatologists with niche practices, the requirement for at least some knowledge and assessment of general dermatology remains. Another pervasive concern about relevancy concerns part III of the MOC program, the cognitive assessment. Traditionally, this portion of MOC is carried out with a periodic, closed-book, knowledge-based examination at a testing center [3]. Many physicians have objected to this component of MOC, in part because of the irrelevancy of the content as discussed above, but also because the testing center does not resemble modern medical practice environments, in which decision support tools and other on-line references are

readily available [17]. A recent evaluation of MOC commissioned by ABMS also concluded that infrequent, high-stakes examinations are not appropriate to achieve the goals of the program, including continuous learning, identifying knowledge gaps and staying current [4]. Here again, the ABD has attempted to accommodate these concerns by rolling out new programs. For example, through remote proctoring, examinees can now take part III of MOC from their own offices, provided that there is appropriate equipment [18]. Starting in 2019, ABD piloted a new program called Certlink, in which an on-line platform will dispense practice-relevant test questions based on articles, core or subspecialty domains in dermatology that diplomates can complete in small batches at convenient times and locations [19]. If the pilot proves successful, the ABD may eventually offer Certlink as an alternative to the intermittent exam [2].

Cost-Effectiveness A core metric of utilitarian policy in healthcare is cost-effectiveness [20]. In the internal medicine community, critics of MOC point to exorbitant costs, both direct and indirect, to participate in the program, especially for subspecialists [21]. There are several large studies of internists showing no differences in patient outcomes and only relatively small differences in costs of care associated with enrollment in MOC [22, 23]. Representatives of the ABD have also acknowledged the challenge of demonstrating improved patient outcomes related to MOC, in part because of the limited collective capacity of dermatologists to gather and analyze outcome data in the first place [13]. In response to criticisms based on cost-­ effectiveness, the ABD has made modifications to the program to reduce cost. For example, the fee for participation in MOC is now only $150 per year, and there is no fee associated with the part III examination or practice improvement exercises [16]. Survey data from dermatologists who have completed the practice improvement modules

255 The Ethics of Maintenance of Certification in Dermatology

have also suggested some benefit of MOC for patient care [24]. Among 289 respondent dermatologists, 12.5% believed their patient care had improved and 16.3% reported better outcomes for at least one patient as a result of completing the modules. According to analyses of Press-Ganey patient experience surveys, mid-career physicians affiliated with a large healthcare system in Wisconsin were more likely to be recommended by patients and more likely to instill confidence in patients if the physicians were actively enrolled in MOC [25]. However, there was no overall difference in patient experience scores between those physicians enrolled in MOC and those who were not. Further, to date, there have been no studies in dermatology assessing the effect of MOC on patient outcomes directly.

Practical Considerations Support for MOC also derives from aspects of the program that are more practical than theoretical. For example, the feared closed-­book examination maintains a very high passage rate in general, approaching 95% for dermatologists [8, 27]. MOC is also important to patients, according to survey data suggesting that board certification is a high priority for patients when selecting a physician [8]. Hospital systems increasingly require ongoing certification for credentialing, although legislation has mounted to combat this trend [9, 10].

Future Directions for MOC

Acknowledging the need for reform, ABMS launched the Vision Initiative, which brought together stakeholders from diverse perspecJustice and Duty Perspectives tives to review the purpose and process of on MOC MOC [4]. The group produced a consensus statement, including several key recommendaLibertarianism refers to a justice philosophy tions for ABMS (7 Box 25.1). Several of the which advocates for regulatory systems that most impactful suggestions included moving uphold individual rights and freedoms [20]. away from periodic high-stakes examinations That is, a governing body is only justified in in favor for more longitudinal and formative action taken to protect the property and rights assessments, developing an integrated assessof individuals. Whatever resources the gov- ment of diplomates rather than through four ernment has available should be distributed independent parts, discouraging healthcare based upon free market forces, not aggregate systems from granting privileges based solely outcomes as with utilitarianism. Opponents on certification status, and making certificaof MOC often view the program as an over-­ tion status and history accessible to the public. reach by regulators. This sentiment is embodied by organizations like the Association of Box 25.1 Key Recommendations from American Physicians and Surgeons, a non-­ the Vision Initiative of ABMS partisan physician group which strongly objects to MOC [26]. Key recommendations Supporters of MOC rebut this criticism by Integration of professionalism, assessment, framing MOC as a form of self-regulation learning and practice improvement into grounded in the tenets of medical professionaldetermination of certification status; not ism [6, 9]. In exchange for the autonomy and independent judgments based on four parts respect granted to physicians in our society, Adoption of longitudinal formative assessments to they argue, physicians must regulate themselves, identify knowledge gaps and stay current; not including through demonstrations of compeintermittent, summative assessments tency to each other and the public. If physicians Elicitation of feedback from diplomates regarding fail to fulfill this duty, their reputation erodes, standards for MOC and other regulators, like the government, Ensuring programs are fair, equitable, transparent, which libertarians may find even more objecefficient, and effective tionable, will likely step in to fill the void.  

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Elimination of redundant mechanisms for MOC for subspecialists

Objection to use of certification status as the sole basis for granting hospital privileges

Continued research on MOC, especially associated with patient outcomes

Aspirational Recommendations:   Data sharing across multiple organizations   Collaboration with professional organizations to acknowledge quality assessment and improvement activities in which diplomates are already participating   Input from multiple stakeholders on evaluation of professionalism

Designation of status of diplomates is clear, current, and publicly available Creation of clear pathways to remediation after loss of certification

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Commitment to diversity in ABMS leadership and transparency in financial stewardship

Case Scenario

Dr. Grandparent achieved primary certification in dermatology prior to 1991 and has therefore received lifetime certification from the ABD. The younger colleagues in her practice are enrolled in MOC and ask her about voluntary participation in the program. She should: A. Decline to participate out of fear of the closed-book, periodic examination associated with Part III of MOC. B. Enroll in MOC based on evidence of improved outcomes for patients. C. Participate in MOC because her healthcare system may require it for privileges in the future. D. Partake in MOC due to a professional duty to engage in lifelong learning and professional self-regulation.  nalysis of Case Scenario A Forgoing participation in MOC, choice A, is common among dermatologists who achieved primary certification prior to 1991 and, as a result, have been granted lifetime certification. Indeed, over 90% of dermatologists in this group, so-called “grandfathers,” choose not to participate in MOC [13]. However, concerns about the closed-­book examination, comprising Part III of the program, are countered by a very high passage rate among dermatologists. Further, novel programs from ABD seek to transition Part III from an infrequent, closed-

book assessment to a more longitudinal formative experience [19, 27]. The ABMS Vision Initiative recommends an end to high-stakes, infrequent, closed-book examinations as part of MOC [4]. Emerging data suggest potential for improved performance as a result of dermatologist participation in MOC, the rationale underlying choice B [24]. However, direct measures of patient outcomes have not yet been studied in dermatology. The ABMS Vision Initiative encourages collection of outcome data, which would bolster utilitarian support for MOC. Compliance with healthcare system credentialing requirements, choice C, represents a common, practical motivation for enrolling in MOC [9, 10]. However, compliance for compliance sake is not a strong ethical argument in general, and the ABMS Vision Initiative discourages healthcare systems from using certification status as the sole criterion for granting privileges [4]. Professional duty, choice D, is perhaps the strongest rationale for participation in MOC. Fundamental aspects of medical professionalism include commitments to life-long learning, practice improvement and self-regulation [6]. Ideally, MOC fulfills these commitments. However, this deontological argument will inevitably be limited if MOC programs cannot demonstrate improvements in knowledge, behavior, and patient outcomes.

257 The Ethics of Maintenance of Certification in Dermatology

References 1. Weinberger SE.  Can Maintenance of Certification pass the test? JAMA. 2019;321(7):641–2. 2. Horn TD. Program for maintenance of certification by the American Board of Dermatology. Cutis. 2017;99(6):376–7. 3. Stratman E, Kirsner RS, Horn TD. Maintenance of Certification in dermatology: requirements for diplomates. J Am Acad Dermatol. 2013;69(1):13e1–4; quiz 17-8. 4. Continuing board certification: vision for the future. [cited 30 May 2019]. Available from: https:// visioninitiative.­o rg/wp-content/uploads/2019/02/ Commission_Final_Report_20190212.­pdf. 5. Horn TD, Roenigk RK. Response to: “Maintenance of Certification: a grandfatherly ethical analysis”. J Am Acad Dermatol. 2018;78(3):e69. 6. American Board of Internal Medicine, American College of Physicians, American Society of Internal Medicine, and European Federation of Internal Medicine. Medical professionalism in the new millennium: a physician charter. Ann Intern Med. 2002;136(3):243–6. 7. Drazen JM, Weinstein DF. Considering recertification. N Engl J Med. 2010;362(10):946–7. 8. Levinson W, et  al. Clinical decisions. American Board of Internal Medicine maintenance of certification program. N Engl J Med. 2010;362(10):948–52. 9. Stoff BK, Bercovitch L, Grant-Kels JM. Maintenance of Certification: a grandfatherly ethical analysis. J Am Acad Dermatol. 2018;78(3):627–30. 10. Lipner RS, et al. Who is maintaining certification in internal medicine--and why? A national survey 10 years after initial certification. Ann Intern Med. 2006;144(1):29–36. 11. Choudhry NK, Fletcher RH, Soumerai SB. Systematic review: the relationship between clinical experience and quality of health care. Ann Intern Med. 2005;142(4):260–73. 12. The value of MOC. [cited 30 May 2019]. Available from: https://www.­abderm.­org/about-moc/the-valueof-moc.­aspx#SkillsDecline. 13. Stratman E, Kirsner RS, Horn TD. Maintenance of Certification in dermatology: what we know, what we don't. J Am Acad Dermatol. 2013;69(1):1 e1–11, quiz 12.

14. Teirstein PS, Topol EJ. The role of maintenance of certification programs in governance and professionalism. JAMA. 2015;313(18):1809–10. 15. Waldorf H.  Activism in aesthetics: fighting MOC requirements. [cited 30 May 2019]. Available from: http://modernaesthetics.­com/tv/?f=activism-in-aesthetics-fighting-moc-requirements. 16. MOC requirements. [cited 30 May 2019]. Available from: https://www.­abderm.­org/diplomates/fulfilling-moc-requirements/moc-requirements.­aspx. 17. Hawkins RE, et al. The ABMS MOC part III examination: value, concerns, and alternative formats. Acad Med. 2016;91(11):1509–15. 18. MOC exam details. [cited 30 May 2019]. Available from: https://www.­abderm.­org/diplomates/mocexamination/moc-exam-details.­aspx. 19. ABD launches CertLink Pilot! [cited 2019 May 30]. Available from: https://www.­abderm.­org/public/ announcements/abd-launches-certlink-pilot.­aspx. 20. Beauchamp TL, Childress JF. Principles of biomedical ethics. 6th ed. New  York: Oxford University Press; 2009. p. xiii, 417 p. 21. Sandhu AT, Dudley RA, Kazi DS. A cost analysis of the American Board of Internal Medicine’s Maintenance-of-Certification program. Ann Intern Med. 2015;163(6):401–8. 22. Gray BM, et al. Association between imposition of a Maintenance of Certification requirement and ambulatory care-sensitive hospitalizations and health care costs. JAMA. 2014;312(22):2348–57. 23. Hayes J, et al. Association between physician timeunlimited vs time-limited internal medicine board certification and ambulatory patient care quality. JAMA. 2014;312(22):2358–63. 24. Stratman EJ, Miller SJ.  Assessment of the focused practice improvement module pilot program of the American Board of Dermatology for Meeting Requirements of Maintenance of Certification. JAMA Dermatol. 2017;153(7):715–6. 25. Morrell J, Stratman EJ. Relationship between physicians’ active participation in Maintenance of Certification and patients’ perspective of care surveys. J Patient Exp. 2016;3(2):43–7. 26. AAPS: MOC. [cited 3 June 2019]. Available from: https://aapsonline.­org/category/moc/. 27. MOC FAQs. [cited 3 June 2019]. Available from: https://www.­abderm.­org/about-moc/moc-faqs.­aspx.

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The Ethics of Inpatient Consultative Dermatology Lauren M. Madigan and Lindy P. Fox Contents Introduction – 260 Inpatient Dermatology: A Social Responsibility – 260 Ethical Considerations Unique to Inpatient Dermatology – 260  hallenges with Autonomy – 261 C Working within the House of Medicine – 262 Issues with Access – 262

Conclusion – 264 References – 264

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_26

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nnLearning Objectives 1. Identify the burden of skin disease among hospitalized patients and our ethical responsibility, as a specialty, to meet this need and prevent morbidity. 2. Discuss the unique ethical concerns faced by consulting dermatologists that challenge them to balance standards of patient autonomy, collegiality, nonmaleficence, beneficence and justice in allocation of care.

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Introduction While dermatology is often perceived as a purely outpatient specialty, there is a significant need among hospitalized patients for skilled dermatologic care. A review of the 2014 National Inpatient Sample estimated that skin disease is diagnosed in approximately 1 out of every 8 hospitalized adults [1]. In addition, approximately 645,000 patients are admitted primarily for skin diseases each year, representing more than $5  billion in associated health care costs [1]. While database statistics have limitations, these numbers confirm the high prevalence of cutaneous disease in the inpatient setting.

I npatient Dermatology: A Social Responsibility Not only is there a large burden of dermatologic disease in the inpatient setting, familiarity with the diagnosis and management of cutaneous disorders is particularly limited outside of the field [2]. Aggregated data from inpatient dermatology services across the United States indicate that the reason for consultation is often ill-defined and the ability of primary services to develop a morphology-­based differential diagnosis is lacking. This translates into a significant opportunity for dermatologists to impact patient care—as demonstrated by a change of treatment in 58–82 % of dermatol-

ogy consults completed [3]. This influence is greater for those with complex cutaneous disorders where disease often extends beyond the skin and expertise is crucial to prevent morbidity [4]. With cases of suspected bacterial cellulitis, for example, dermatology consultation has been shown to better identify mimics. These consultations prevent unnecessary hospitalization and safeguard against inappropriate antibiotic exposure [5–7]. Despite the fact that it is our responsibility as a field to provide high-level care to hospitalized patients, it is becoming increasingly difficult for outpatient providers to meet this need. Complexity of disease, issues with reimbursement for time spent, and increasingly specific inpatient electronic medical records are among the many hurdles to providing care [8]. One proposed solution is appointing dedicated dermatology hospitalists who serve this need at their institutions. These providers would be particularly adept in the acute management of complex skin diseases as well as comorbid disorders and the varied and often specific treatments (such as chemotherapy) that accompany them [8]. Whatever the strategy, expert guidance for skin disease in the hospital is essential to avoid inappropriate management and associated harm. It is therefore our social responsibility to serve this unique patient population.

 thical Considerations Unique E to Inpatient Dermatology Inpatient dermatology consultants are regularly faced with ethical dilemmas that are more similar to internal medicine hospitalists than to exclusively outpatient dermatologists [9]. The hospital environment is unique with distinct challenges, including the need for rapid decisions based on limited information and a lack of established rapport [10]. Concerns for patient autonomy, relationships with colleagues, and a responsibility toward the just allocation of care contribute to a complex and evolving ethical environment.

261 The Ethics of Inpatient Consultative Dermatology

Challenges with Autonomy Respect for patient autonomy is an essential component of medical practice. It encompasses a provider’s duty to honestly present information, respect privacy, obtain consent for interventions and provide guidance without coercion [11]. While the protection of a patient’s right to choose is critical in all practice scenarios, the inpatient setting provides unique barriers to the ethical delivery of care. Take the inpatient skin biopsy for example. This common procedure is performed by inpatient doctors in approximately 40  % of consultations at academic centers [12]. Prior to the biopsy, the patient must be counseled regarding the potential risks and benefits. While this seems straightforward, multiple barriers may exist. First, the patient may be unable to participate in the discussion either due to incapacity or medical interventions (such as intubation and sedation). Capacity requires an ability to both understand information and appreciate the consequences of action and inaction [10]. When the patient is unable to meet this standard, a surrogate decision-­ maker or next of kin is often required to act in his or her interest. This becomes even more challenging when an appropriate surrogate is not identified and physicians and ethics committees are called upon to serve in this role [9]. The legal standard for consent does allow an exception for emergency situations where an appropriate proxy is not available and further delay would lead to harm. The physician, in this instance, is allowed to provide care under the presumption that a reasonable person would consent to the procedure [13]. While this does not apply to most skin biopsies, for patients with potentially life threatening cutaneous conditions—such as an angioinvasive fungal infection or toxic epidermal necrolysis (TEN)—a delay in diagnosis could foreseeably lead to harm. Even in these situations, however, all attempts to identify a surrogate should be made prior to proceeding, as there is often

more flexibility in the timing of cutaneous procedures than in other emergent interventions (such as intubation). Providing an honest appraisal of potential benefits of a biopsy can also be challenging, as many disorders encountered in the hospital may be indistinguishable by histopathology. For instance, when approaching a patient with a morbilliform eruption immediately following a hematopoietic transplant, the potential benefits of a skin biopsy are different than when, for example, sampling a suspected keratinocyte carcinoma. In a blinded study, two independent dermatopathologists were unable to reliably differentiate cases of acute graft versus host disease (GVHD) from other etiologies based on routine skin biopsies. No single parameter assessed (including necrotic cells in appendages, dyskeratotic keratinocytes, basal vacuolization and satellitosis) achieved statistical significance as a discriminator [14]. Despite the possibility that a skin biopsy might not provide a diagnosis, many inpatient dermatologists do offer and perform skin biopsies in the above described setting, as the stakes are high and there is a chance (albeit small) that the biopsy will be diagnostic. Thus, when considering a skin biopsy and counseling patients regarding risks, it is essential to consider the limitations of this procedure. In general, providing aggressive medical intervention to critically-ill patients is fraught with ethical complexities. A doctor is often required to balance autonomy with both benevolence and nonmaleficence and, in doing so, advise decision-makers with limited insight or medical literacy—who may or may not be the patient themselves. In these situations, the balance of risks and benefits is difficult. For example, when a patient presents with both a life-threatening inflammatory condition and a life-threatening infection, managing immunosuppression becomes particularly challenging. Similar concerns arise when discussing aggressive measures at the end of life [11].

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 orking within the House W of Medicine

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Interdisciplinary collaboration and communication is an essential part of medical practice. While shared decision making occurs in the outpatient setting, inpatient dermatology consultants rely on physician partnerships in every single patient encounter—whether it be with the primary admitting team or other consulting services. This relationship can become strained when there are differing expert opinions regarding management or when there is poor compliance with recommendations (such as a failure to place orders for nursing procedures such as wound care or topical steroid wraps). In these circumstances, two competing ethical standards must be reconciled; beneficence and collegiality. Beneficence encompasses an active responsibility toward promotion of the patient’s welfare and prevention of harm wherever possible [11]. It involves the careful measurement of risks and benefits, a task which can be particularly challenging in the face of medical comorbidities and acute illness [9]. When consultants perceive that the benefit of their management strategy outweighs potential risks, and these recommendations are refused by the primary service, conflict may arise. In such instances, the principle of beneficence dictates that the inpatient dermatologist must advocate for what is best for the patient, above all other interests. While challenging, physicians in disagreement should strive to maintain respect and cooperation. Collegiality is essential to medicine and has been identified by the American Academy of Dermatology as an ethical standard through inclusion in the Academy’s Ethics Pledge (“I will foster collegiality through interaction with the medical community)” [15]. When mutual respect and trust are compromised, quality of care can be negatively affected and lead to poor outcomes— both acutely and for future patients [16]. Collegiality may also conflict with the principles of autonomy, as it pertains to

­ rivacy, and nonmaleficence. This occurs in p the setting of the “curbside consult” where a colleague seeks access to a specialist’s opinion though a quick conversation, email or text message without the patient being physically seen by the specialist [17]. These requests are commonplace [18] and create a distinct ethical dilemma. The dermatology consultant feels obligated to provide an opinion out of a fear of jeopardizing a professional relationship [17, 18] or a desire to protect the patient from inappropriate care. Curbside consults are dangerous, however, as confidentiality cannot be preserved reliably and confounding variables may exist that are not appropriately communicated [17]. Lack of a complete assessment may lead to a violation of nonmaleficence and cause undue harm.

Issues with Access The field of dermatology has been increasingly challenged by limited access to care; inpatient dermatology, as a subspecialty, has not been immune. It is becoming increasingly difficult for outpatient providers to meet the need for inpatient consultation in their communities due to busy, structured practices, a lack of support, and concerns with treating an increasingly complex patient population. There are also a limited number of academic hospitals and departments that support a full time inpatient consultation service. While there has been a gradual increase in the number of subspecialists dedicated to this unique population, it has not kept pace with the expanding patient network [3]. In a 2014 survey of Pennsylvania hospitals, only 50  % reported any form of access to inpatient dermatology consultants and 19  % of those reporting access received consultation by non-­ dermatology providers [19]. At the center of this issue lies the ethical principle of justice, which obligates the fair distribution of risks, benefits and costs [11]. Provision of care should not be restricted to

263 The Ethics of Inpatient Consultative Dermatology

those who live in large cities or have the financial means to travel. Teledermatology ­ has been explored as a solution to this issue as it reduces the burden of time and distance [20]; however, the ability of technology to fully meet this need has yet to be determined (and is not without further ethical concerns). The quality of teleconsultation is often dependent on the practitioner in the field and limited training in proper dermatologic assessment may confound management in a way similar to the “curbside consult.” Compensation is also a consideration, as telemedicine is not universally covered by payors.

This leads to the question of whether centers with dermatology consultants should provide services out of social responsibility when it is unclear if the time necessary to complete these consults will be reimbursed. Finally, despite the challenges, many outpatient providers have remained dedicated to meeting this need in their community. Ensuring appropriate payment models, reducing the number of consults for issues that can be adequately addressed as an outpatient, and shared responsibility among providers in a geographic region may help to ameliorate the strain of providing care [21].

Case Scenarios

Case 1 An inpatient dermatologist accepts a phone call from an intensivist at a rural hospital in an adjoining state. The intesivist requests management recommendations for a male patient in his seventies with end stage renal disease and suspected toxic epidermal necrolysis (TEN). There is no community dermatologist available to see the patient that day and his critical care team is concerned as he is exhibiting “a rapid progression in sloughing.” They believe that an immunosuppressive medication needs to be started immediately and request guidance with a choice of agent and dosing recommendations. In this circumstance, the inpatient dermatologist first requested that clinical photographs be sent through a secure, HIPAA-compliant website established by the hospital. The quality of the images was unfortunately very poor. What was apparent, however, was that the skin was diffusely erythematous with areas of flaccid bullae with denudation. After review of the photographs, it was suspected that the level of cleavage was higher in the epidermis than the basement membrane zone—which would be expected in cases of TEN. It was recommended that the patient be transferred for expert evaluation and escalation of care. Upon arrival, he was found to have cutaneous features consistent with a diagnosis of staphylococcal scalded

skin syndrome which was confirmed via histopathology. He received supportive care and parenteral antibiotics with ultimate resolution. This case highlights the importance of expertise in the management of cutaneous disease. Subtle morphologic features were identified which ultimately lead to the correct diagnosis and management strategy. While the standard of collegiality might tempt the provider to provide recommendations with limited information— and not insist on transfer—this could have led to a devastating outcome. Teledermatology was beneficial in this case; however, its utility was limited by the quality of the images provided. This scenario also emphasizes the ethical standard of justice as this patient was seen at a hospital which did not have dermatology consultation readily available. This further highlights our responsibility, as a specialty, to ensure that patients do not suffer due to lack of access. Case 2 A marginally housed man in his forties is brought to the emergency department with severe mucocutaneous blistering and widespread erosions. He suffers from schizophrenia and is cachectic with several large ulcers overlying ankle and hip joints. Following a ­ thorough clinical, radiographic, and histopathologic evaluation, he is diagnosed with

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severe pemphigus vulgaris and osteomyelitis of the lower leg. He provides no information regarding next-of-­kin. He is agitated and tangential but consistently refuses wound care, oral medications and IV placement. This scenario captures the unique ethical challenges inherent in providing hospital-­based care. First, there are issues with autonomy. While the patient refused interventions, he also suffered from an untreated psychiatric condition and was ultimately deemed to lack capacity. Care decisions were further confounded by multiple comorbid disorders that challenged providers to balance risks and benefits on his behalf. Beneficence seemed to dictate aggressive management of his autoimmune condition as this was the ultimate source of his pain and suffering. Unfortunately, given the advanced stage

>>Points of Emphasis 55 Dermatologists have an ethical obligation to provide access to inpatient care to hospitalized patients with skin diseases. 55 The specific ethical issues encountered by inpatient dermatologists are similar to those faced by internists and other hospital-based specialties. 55 The “curbside” consult (either in the hospital or via remote access) places the inpatient dermatologist in an ethical dilemma between fostering collegiality (among the consulting physician and the specialist), and autonomy and nonmaleficence on behalf of the patient. This type of consult should be avoided.

Conclusion Data exist supporting the indispensable role of dermatologists in the hospital; however, practicing in the inpatient environment leads to unique ethical considerations and potential conflicts. As the subspecialty continues to mature, a dedication to establishing ethical standards is essential as are further efforts to reach those patients who currently lack care.

of  disease at presentation, his course was complicated by life-­ ­ threatening osteomyelitis. Based on the principle of nonmaleficience, he was not deemed to be a surgical candidate due to cachexia and concerns regarding wound closure in the setting of uncontrolled pemphigus. He was maintained on intravenous antibiotics, without a clear end point, and the risk of immunosuppression was uncertain. Even supportive care produced a dilemma as dressing changes resulted in additional pain. Analgesic agents were provided, however, this further contributed to his inability to participate in care discussions. An ethics consult was placed and concerted efforts were made to find a surrogate decisionmaker. His brother was ultimately located and, after several goals of care discussions, elected to pursue comfort care measures only.

References 1. Arnold JD, Yoon S, Kirkorian AY.  The national burden of inpatient dermatology in adults. J Am Acad Dermatol. 2019;80(2):425–32. 2. Beshay A, Liu M, Fox L, Shinkai K. Inpatient dermatology consultative programs: a continued need, tools for needs assessment for curriculum development, and a call for new methods of teaching. J Am Acad Dermatol. 2016;74(4):769–71. 3. Madigan LM, Fox LP.  Inpatient consultative dermatology: where are we now? Assessing the value and evolution of this sub-specialty over the past decade. J Am Acad Dermatol. 2019;80:S01909622(19)30137-9. 4. Galimberti F, Guren L, Fernandez AP, Sood A. Dermatology consultations significantly contribute quality to care of hospitalized patients: a prospective study of dermatology inpatient consults at a tertiary care center. Int J Dermatol. 2016;55(10):e547–51. 5. Weng QY, Raff AB, Cohen JM, et  al. Costs and consequences associated with misdiagnosed lower extremity cellulitis. JAMA Dermatol. 2016;153:141. 6. Ko LN, Garza-mayers AC, St John J, et al. Effect of dermatology consultation on outcomes for patients with presumed cellulitis: a randomized clinical trial. JAMA Dermatol. 2018;154:529. 7. Li DG, Xia FD, Khosravi H, et  al. Outcomes of early dermatology consultation for inpatients diagnosed with cellulitis. JAMA Dermatol. 2018;154:537. 8. Fox LP, Cotliar J, Hughey L, Kroshinsky D, Shinkai K. Hospitalist dermatology. J Am Acad Dermatol. 2009;61(1):153–4.

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9. Hansra NK, Shinkai K, Fox LP.  Ethical issues in inpatient consultative dermatology. Clin Dermatol. 2012;30(5):496–500. 10. Rajput V, Bekes CE. Ethical issues in hospital medicine. Med Clin North Am. 2002;86(4):869–86. 11. Beauchamp TL, Childress JF. Principles of biomedical ethics, vol. 2009. 7th ed. New  York: Oxford University Press; 1979. p. 2013. 12. Kroshinsky D, Cotliar J, Hughey LC, Shinkai K, Fox LP.  Association of Dermatology Consultation with accuracy of cutaneous disorder diagnoses in hospitalized patients: a multicenter analysis. JAMA Dermatol. 2016;152(4):477–80. 13. Appelbaum PS.  Clinical practice. Assessment of patients’ competence to consent to treatment. N Engl J Med. 2007;357(18):1834–40. 14. Kohler S, Hendrickson MR, Chao NJ, Smoller BR.  Value of skin biopsies in assessing prognosis and progression of acute graft-versus-­host disease. Am J Surg Pathol. 1997;21(9):988–96. 15. Stoff BK, Scully K, Housholder AL, Fabbro S, Kantor J.  The American Academy of Dermatology (AAD) ethics pledge: I will put my patients’ welfare above all other interests, provide care that adheres to

professional standards of practice, provide care for those in need, and foster collegiality through interaction with the medical community. J Am Acad Dermatol. 2016;75(2):445–8. 16. Mcdaniel SH, Morse DS, Reis S, et  al. Physicians criticizing physicians to patients. J Gen Intern Med. 2013;28(11):1405–9. 17. Grant-kels JM, Kels BD. The curbside consultation: legal, moral, and ethical considerations. J Am Acad Dermatol. 2012;66(5):827–9. 18. Kuo D, Gifford DR, Stein MD. Curbside consultation practices and attitudes among primary care physicians and medical subspecialists. JAMA. 1998;280(10):905–9. 19. Messenger E, Kovarik CL, Lipoff JB.  Access to inpatient dermatology care in Pennsylvania hospitals. Cutis. 2016;97(1):49–51. 20. Sharma P, Kovarik CL, Lipoff JB. Teledermatology as a means to improve access to inpatient dermatology care. J Telemed Telecare. 2016;22(5): 304–10. 21. H Helms AE, Helms SE, Brodell RT. Hospital consultations: time to address an unmet need? J Am Acad Dermatol. 2009;60(2):308–11.

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The Ethical Responsibilities of Physicians During Epidemics Madeline E. DeWane and Lionel Bercovitch Contents Exploring the Duty to Treat – 268 E xpressed Consent – 268 Implied Consent – 269 Special Training – 269 Reciprocity – 270 Professional Oaths and Codes of Conduct – 271

Limitations of the Duty to Treat – 272 Conclusions – 274 References – 275

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_27

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nnLearning Objectives

1. To understand the ethical and moral arguments for a physician duty to treat during epidemics. 2. To explain the ethical and moral arguments against a physician duty to treat during epidemics. 3. To explore the ethical obligations of dermatologists during a disease outbreak.

»» When pestilence prevails, it is [physicians’]

duty to face the danger, and to continue their labors for the alleviation of suffering, even at the jeopardy of their own lives. – AMA Code of Ethics, 1847 [1]

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Disasters and disease outbreaks that pose a threat to responding healthcare workers have occurred throughout history [2]. The first recorded pandemic occurred in 541 AD (Justinian Plague) and killed over 25 million people [3]. There have been influenza pandemics several times each century since the Middle Ages, with the outbreak of 1918 representing the most deadly of the twentieth century. Twenty-first century threats include severe acute respiratory syndrome (SARS), H1N1, Middle East respiratory syndrome coronavirus (MERS), Ebola, and coronavirus disease of 2019 (COVID-19), among many others [2]. According to the World Health Organization (WHO), multiple additional emerging diseases have substantial risk of causing widespread public health disasters in the future [4]. Throughout history, physicians have been involved in responses to epidemics and disease outbreaks, even when the risk of illness, injury, or death is considerable. The preamble to the American Medical Association (AMA) Declaration of Professional Responsibility begins, “Never in the history of human civilization has the wellbeing of each individual been so inextricably linked to that of every other. Plagues and pandemics respect no national borders in a world of global commerce and travel…The unprecedented scope and immediacy of these universal challenges demand concerted action and response by all” [5]. Although the “moral backbone” of the medical profession is to put the needs of patients first, individual physicians are forced

to weigh their professional duty against their personal safety during disease outbreaks and public health emergencies [2]. What, if any, are the physician’s ethical obligations in these scenarios? Given that many infectious diseases have cutaneous manifestations, what is the dermatologist’s responsibility in an outbreak?

Exploring the Duty to Treat The professional obligation of “duty to treat” is often cited as the basis for physician responsibilities during epidemics [6]. The relationship between physicians and their patients is considered fiduciary, meaning “a relationship in which one party places special trust, confidence, and reliance in and is influenced by another who has a…duty to act for the benefit of the party” [7]. Physicians are expected to act “solely and entirely” in the patient’s best interest, setting competing interests (including self-interest) aside [8]. The conceptualization of the physician role during an emergency is grounded in this special relationship. It therefore extends beyond “common morality,” which in and of itself dictates that “we all, in virtue of our shared humanity, have a moral duty to aid others in great need when we can do so at minimal risk to ourselves” [9]. Five arguments are commonly made that support the existence of a physician “duty to treat” during emergencies and epidemics; They are expressed consent, implied consent, special training, reciprocity (or the social contract view), and professional oaths and codes of conduct [9]. Each of these defenses, as well as arguments against an absolute duty to treat, will be discussed in this chapter. The applicability of these principles to dermatologists will also be explored.

Expressed Consent The case of expressed consent is the strongest but least commonly applicable of the arguments in favor of a physician duty to treat. Expressed consent would apply, for example,

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in the case of an infectious disease or emergency room physician who, as part of his or her contract, explicitly agrees to provide care in the case of a disease outbreak [9]. Realistically, this covers only a small percentage of physicians. Additionally, many current physicians accepted their jobs when infectious disease was not a highly publicized concern. Although these physicians would have been aware of the hypothetical risks, infectious disease was thought to have been “conquered” as recently as the 1970s when the United States Surgeon General declared, “It is time to close the door on infectious disease” [10]. The expressed consent defense has little relevance to the majority of physicians, including dermatologists.

Implied Consent The concept of implied consent is more nuanced and more widely relevant, potentially applying to all physicians or even all healthcare workers. This defense of the duty to treat argues that physicians – who make an autonomous choice to practice medicine – implicitly consent to treat infectious patients because risk is inherent in the practice of medicine. These risks do not need to be explicitly stated or accepted because they are an obvious and widely known part of providing medical care [9]. Analogies to other professions with inherent risk are often made to explain this argument. >>Point of Emphasis “Risk is part of the profession of medicine, as it is part of the work of the police, firefighters or soldiers. No one has any moral obligation to enter any of those social roles. If, however, they chose to enter public safety roles, then society has the legitimate moral expectation that they will accept the risk attached to those roles” [5].

The implied consent defense is not without its limitations, however. The extent to which implied consent is applicable across varying medical specialties is unclear. Does an ophthalmologist, for example, have a duty to treat

Ebola patients in the case of a local epidemic? How do a dermatologist’s obligations differ from those of a critical care physician? Some physicians may have specifically chosen their specialties because they come with fewer inherent risks. Is their consent to treat contagious patients in an epidemic also implied simply by virtue of their becoming physicians? In fact, physicians themselves seem to disagree on this issue. In a random survey of AMA member physicians, only slightly more than 50% felt they had a duty to treat in the event of an outbreak of an unknown, but potentially deadly illness [11]. >>Point of Emphasis Implied consent Argument in favor Every physician makes an autonomous choice to practice medicine, and it is well known and widely accepted that there is risk inherent in caring for the sick.

Argument against Medical specialties vary widely in their level of risk, and it is unclear whether implied consent applies to ALL physicians equally.

Special Training Another argument in favor of the physician duty to treat is that physicians have special training that makes them better able to provide care and also reduces the risk associated with providing it (for example, knowledge of personal protective measures and access to vaccinations, medications, or other supplies) [9, 12]. This is the equivalent of distinguishing between the ethical responsibilities of a lifeguard versus those of a bystander who cannot swim in the case of a drowning stranger [9]. The lifeguard is trained in water rescue, both increasing the chance that the rescue will be successful and decreasing the risk to the lifeguard him or herself. The lifeguard’s ethical obligations differ from those of the bystander because the lifeguard has special training. The problem with the special training argument is that experience relevant to infectious disease outbreaks varies widely across specialties, and even between individual phy-

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sicians within a field. In a 2003 survey of practicing physicians, although a majority of physicians indicated that they would be willing to assist during an unknown disease outbreak, only a fifth of those surveyed felt they would be prepared to handle such an event [11]. Dermatologists who do not frequently care for patients with severe infectious disease may or may not feel that they have the required skill set to assist in the case of a disease epidemic. The special training defense of the duty to treat would view a Mohs surgeon as having equivalent ethical obligations to an infectious disease specialist. A distributive justice perspective would argue that all specialists share this ethical obligation equally, but many physicians would regard this as impractical and unrealistic. >>Point of Emphasis Special training Argument in favor Physicians have special training that makes them (1) able to provide superior care and (2) better able to minimize the risks associated with that care.

Argument against Training and experience vary between medical specialties and between individual physicians; not all physicians are equally equipped to respond to a disease outbreak.

Reciprocity Just as the physician’s relationship with the patient is viewed as fiduciary, the physician’s relationship with society as a whole also comes with unique responsibilities. This concept is known as reciprocity, or the “social contract” view, and suggests that because physicians enjoy many benefits (prestige, financial benefit, and self-regulation as a profession, for example), they have an obligation to care for society’s members in return, regardless of the risk involved [1, 9]. Proponents also point out that medical education and medical research are heavily subsidized by the public (through

tax funding of scholarships, federal research dollars, and public universities), reinforcing physicians’ responsibility to society [6]. The public expectation of duty (and the maintenance of public confidence in the profession) is also important to consider [1]. Just as society expects a firefighter to respond when a building is on fire, so too do they expect that a physician will provide care during an epidemic. Leonard Fleck, a bioethicist, wrote, “In the case of medicine, society at large has underwritten…the bulk of the costs associated with medical training, as well as the very large costs associated with medical research. This gives physicians the powerful tools that allow them to be effective healers and to be rewarded with the social status and economic perks attached to successful medicine. Both the morale and efficiency of police and firefighters and soldiers (not to mention the confidence of the public) would be substantially undermined if individuals in these roles refused to perform their duties in the face of the normal range of risks associated with their roles (as opposed to occasional extraordinary risks, which may be justly regarded as supererogatory for any individual). The same is certainly true in medicine, especially when the rewards to individuals are so much greater than in any of those other risk-bearing roles” [13]. Despite the strength of this argument, even Fleck acknowledges that when risks are extreme, the act of serving (in this case, providing care), becomes supererogatory (ie, morally good, but not strictly required; what might colloquially be referred to as going “above and beyond”) [14]. This still leaves physicians with the question of where the line between normal and extraordinary risk (and therefore between professional duty and supererogatory action) should be drawn. Additionally, not all physicians benefit equally as part of the medical profession [9], and medical training may be publicly subsidized to varying extents depending on where one trains and practices.

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>>Points of Emphasis Reciprocity Arguments in favor The relationship between physicians and their patients is fiduciary (meaning physicians have special responsibilities and should put the patients’ best interests first). Medical training and research is heavily subsidized, and physicians enjoy many benefits of practicing medicine. Therefore, physicians are obligated to care for society’s members (social contract view). There is a public expectation that physicians will respond in an emergency.

Arguments against Not all physicians benefit equally from practicing medicine. Medical training is publicly subsidized to vary degrees depending on where one trains/ practices. The line between expected and extraordinary risk is not defined.

 rofessional Oaths and Codes of P Conduct The most compelling arguments that physicians have a duty to treat during epidemics comes from the professional oaths and codes of conduct that are intended to guide physician behavior and set professional standards. The ideal that the patient’s health should be a physician’s first priority is codified in the oaths taken by physicians in training, most often a modernized version of The Hippocratic Oath or the Declaration of Geneva [15, 16]. Some argue that the duty to care for patients during epidemics can be clearly extrapolated from these oaths. The AMA discusses physician responsibilities during disasters and epidemics more directly. Their Declaration of Professional Responsibility emphasizes “medicine’s social contract with humanity” and states, “As physicians, we are bound in our response by a common heritage of caring for the sick and the suffering. Through the centuries, individ-

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ual physicians have fulfilled this obligation by applying their skills and knowledge competently, selflessly and at times heroically. Today, our profession must reaffirm its historical commitment to combat natural and man-­ made assaults on the health and wellbeing of humankind. Only by acting together across geographic and ideological divides can we overcome such powerful threats. Humanity is our patient” [5]. With respect to the physician duty to treat, the AMA states, “Because of their commitment to care for the sick and injured, individual physicians have an obligation to provide urgent medical care during disasters. This ethical obligation holds even in the face of greater than usual risks to their own safety, health or life. The physician workforce, however, is not an unlimited resource; therefore, when participating in disaster responses, physicians should balance immediate benefits to individual patients with ability to care for patients in the future. Moreover, individual physicians should take appropriate advance measures to ensure their ability to provide medical services at the time of disasters, including the acquisition and maintenance of relevant knowledge” [17]. While this opinion clearly asserts a duty to treat, it also emphasizes that care for patients should be balanced with physician safety, again placing the ultimate onus for risk assessment and decision making on the individual. The American Academy of Dermatology (AAD) makes perhaps the strongest statement regarding the physician duty to treat. The AAD Code of Medical Ethics for Dermatologists states, “It is also unethical for a dermatologist to discriminate against a class or category of patients and to refuse the management of a patient because of medical risk, real or imagined” [18]. However, the scope of the dermatologist’s responsibility is limited somewhat by the caveat that “a dermatologist has an obligation to render care only for those conditions that he or she is competent to treat” [18]. Thus, while a dermatologist would be ethically obligated to consult on a patient

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with an unknown, potentially deadly illness who develops widespread blistering, the same obligation might not necessarily apply were there to be an outbreak of serious infectious disease without cutaneous manifestations. Many other professional codes of conduct convey a commitment to prioritize patient care over other interests, but they rarely directly address the duty to treat. When they do, as in the AAD position, their interpretation and scope of application still remains open to some debate [9]. It is unclear whether such codes commit a physician to treat any patient under any circumstance, or whether these expectations cease to apply when the level of risk is high enough. Is the same dermatologist in the example above still obligated to see the patient with widespread blistering, if, for example, there is no personal protective equipment available? Additionally, some physicians may see oaths and codes of conduct as more symbolic than binding, offering general guidance rather than specific behavioral rules [12]. Complicating this issue is the fact that physician autonomy is highly valued and is also directly addressed in the AMA’s Principles of Medical Ethics. Principle VI states, “a physician shall, in the provision of appropriate patient care, except in emergencies, be free to choose whom to serve, with whom to associate, and the environment in which to provide medical care” [19]. What constitutes an “emergency” is not defined – Is it an imminent risk of death? An emergency room beyond capacity? A disease outbreak in a neighboring ­hospital? – and makes interpretation of this principle particularly challenging [12]. Finally, not all physicians are members of the professional organizations that create professional codes and oaths of conduct. In fact, although the AMA’s Principles of Medical Ethics are commonly cited as a guide to behavior for all physicians, only about 25% of US physicians belong to the AMA [12]. It can be argued that it is unreasonable to require all physicians to abide by a given organization’s code of conduct if they (1) are not members, and (2) did not contribute to its creation.

>>Points of Emphasis Professional oaths and codes of conduct Arguments in favor Arguments against Many professional oaths and codes of conduct emphasize the prioritization of patient care above self-interest. Some explicitly address and affirm a duty to treat, regardless of risk.

Not all physicians belong to the professional societies that develop oaths/codes. Even when a duty to treat is asserted, caveats are made for excessive risk or situations in which physicians do not have the skill set to respond.

Limitations of the Duty to Treat Although specific issues with each of the commonly cited defenses of the duty to treat are discussed above, there are also more general criticisms of the concept as a whole. The first is applicability. If a duty to treat exists, it is unclear whether it applies to everyone equally, especially as medicine has become more specialized. The skill sets, responsibilities, and obligations of a dermatologist may be dramatically different from those of an emergency medicine or critical care physician. Survey study data suggest that a willingness to treat patients during an outbreak of a deadly illness is directly associated with feeling personally prepared for such an event, highlighting the differences in physician comfort level with providing this kind of care [11]. The question then becomes, does the duty to treat bind all physicians simply because they have all graduated from medical school? Does the duty vary based on individual physician experience and training? Alternatively, is the duty for some physicians discharged altogether if enough other members of a group step up to assist in an emergency? The principle of distributive justice suggests that burdens should be shared equally across all members of a group, but what defines a “group” is unclear [20]. A similar issue is encountered when considering the scope of duty to treat from a

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purely geographic standpoint. Does the duty to treat apply only to patients within a physician’s institution? Malm et al. write, “Is it enough that one’s local hospital is overwhelmed, or must all the hospitals in the city be overwhelmed, the county, the state, or the region? And at what point is a physician from one community, whose system is not overwhelmed, [obligated] to either travel to another community whose system is overwhelmed or take on the local duties of a colleague so that that colleague may travel to aid the other community?” [9]. Even if a duty to treat exists, there is still a considerable amount that is left to an individual physician’s judgment in terms of how far (both literally and figuratively) that duty extends. Physicians and other healthcare workers also have a right to care for themselves, and when applicable, for their families. The need to safeguard one’s own wellbeing can be considered an ethical obligation when considering that in order to care for patients, a physician needs to avoid becoming a patient him or herself [6, 21]. Though many physicians would agree that, at a certain point, risk to the physician’s life overrides the professional duty to treat, there is no consensus on what this level is or who should make this determination. In keeping with the commonly used firefighter analogy, Malm et al. write, “Although physicians, like firefighters, have special positive duties that require them to assume greater risk than that associated with

general positive duties that we all have to help an individual in distress, no one expects the firefighter to rush into a collapsing building” [9]. The problem is that there is no clear equivalent of the “collapsing building” in medicine. Finally, some bioethicists argue that the entire concept of duty to treat is ­counterproductive because it dismisses what is often legitimate fear of harm and questions the ethics of those physicians who prioritize their own safety or the safety of their family over patient care [21]. Tomlinson argues, “Providing care for patients with [serious contagious disease] is a very good and selfless thing, which exemplifies the highest ideals of the profession. Some physicians, perhaps many, will fall short of this ideal, not being able to master their fear, for themselves and for their families. For that they should not be condemned—which is what the language of duty demands—but helped to rise to the occasion. That is best done by example….When we speak of the ethics of caring for risky patients we should prefer the language of moral celebration over the language of moral censure” [21]. Other authors note that in fact, caring for patients during a disease outbreak is not purely burdensome, and in some cases can provide a once in a lifetime learning opportunity [20]. Finally, it has also been pointed out that while issues surrounding the duty to treat are frequently debated, what we owe to those who meet that duty and are injured in the process is less often discussed [22].

Case Scenarios

1. During an outbreak of an unknown, potentially deadly disease, the on-­call dermatologist is consulted to evaluate an affected patient who has recently developed areas of skin necrosis. The AAD makes a strong statement affirming the duty to treat for dermatologists: It is unethical “to refuse the management of a patient because of medical risk, real or imagined” [18]. In this case, the dermatologist in question is oncall, establishing a clear responsibility to see

patients when consulted. Additionally, this patient has cutaneous manifestations of disease that the dermatologist should be well equipped to evaluate (i.e., the dermatologist is competent to provide the requested care). Although there is a personal risk to the dermatologist in evaluating this patient, his or her professional obligation to patient care should come first. The dermatologist should follow any isolation protocols that have been instituted, use personal protective equipment as appropriate, and agree to evaluate the patient.

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2. During a local measles outbreak, a dermatologist (parent of a newborn) is asked to evaluate a patient with fever, cough, and a widespread rash.

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In this scenario, there is potential risk to both the dermatologist and her newborn baby, who is too young to have received the MMR vaccine. Although her immune status is (likely) known in this case, it is understandable that the dermatologist might have some hesitation in seeing a patient who may be infected with measles, especially with a vulnerable infant at home. This dermatologist must balance her own safety and the safety of her family with her professional obligation to provide medical care. As stated above, the AAD takes a firm stance that the dermatologist is ethically obligated to see the potentially infectious patient. It is easy to imagine how this scenario could become more nuanced, however. What if there was no personal protective equipment available? What if the dermatologist herself was chronically immunosuppressed for medical reasons? In these cases, the risks to the dermatologist are higher. However, refusing to see the patient – especially if there is no other physician available to provide care – could be considered unethical or negligent. There is no clear guidance on what level of risk is so high that it overrides a physician’s professional obligation to care for patients. 3. A hospital 30 miles away is overwhelmed with a large number of patients suffering from an unknown infectious disease. The disease is characterized, in part, by widespread blistering. The hospital is short-­staffed, and they are looking for help from the surround-

Conclusions A commitment to patient care is at the heart of the medical profession. This commitment may be challenged, however, during disease epidemics and other disasters that pose serious risk to responding physicians. Although dermatology is a relatively specialized field of medicine, many systemic diseases have cuta-

ing communities to assist with the influx of patients. Several of the common defenses of the duty to treat are tested when a physician is asked to provide high-risk care outside of his or her own institution or community. The disease in question in this scenario obviously has dermatologic relevance, and a duty to treat is easily established when the dermatologist has an existing professional relationship with the patient or institution in question (i.e., when it is [a] the dermatologist’s own patient who is potentially contagious or [b] a patient in an institution where the dermatologist regularly consults). However, it is less clear whether geographical boundaries exist to the dermatologist’s professional obligations exist, and if so, where they should be drawn. It is undeniable that we live in a global community. As the AMA points out, “Plagues and pandemics respect no national borders in a world of global commerce and travel” [5]. A social contract view of the duty to treat might suggest that a physician’s ethical obligation is to society as a whole, rather than any one community, institution, or town. However, the practical considerations of a physician leaving one community to help in another must also be considered. It might not be ethically acceptable, for example, for the dermatologist to cancel urgent visits at his or her own clinic in order to provide assistance in a neighboring town, county, state, or country. A dermatologist’s primary ethical obligation is to his or her own patients. When that duty has been met, it is left to the dermatologist’s own judgment as to whether he or she is able and willing to provide care in another community.

neous manifestations. The AAD clearly affirms the dermatologist’s duty to treat, regardless of medical risk, as long as the dermatologist is competent to treat the condition at hand. However, there may be times when the personal risk associated with treating a patient is extreme, and there is little guidance for dermatologists and other physicians to determine their ethical obligations in these

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situations. Ultimately, even if an absolute duty to treat exists, a great deal is still left to the individual physician’s judgment in terms of how far that duty extends.

References 1. Huber SJ, Wynia MK. When pestilence prevails … physician responsibilities in epidemics. Am J Bioeth. 2004;4(1):5–11. 2. Iserson KV. Must I respond if my health is at risk? J Emerg Med. 2018;55(2):288–93. 3. History of the plague|plague|CDC [Internet]. Available from: https://www.cdc.gov/plague/history/index.html. Accessed July 7, 2019. 4. WHO. Anticipating epidemics [Internet]. WHO. Available from: http://www.­who.­int/csr/disease/ anticipating_epidemics/en/. Accessed July 7, 2019. 5. American Medical Association. Declaration of professional responsibility: medicine’s social contract with humanity. Mo Med. 2002;99(5):195. 6. Shaw DJ, Maciag M, Bercovitch L. “I didn’t sign on to die”: the dermatologist’s ethical obligations during a deadly epidemic. J Am Acad Dermatol. 2016;74(1):183–5. 7. Legal definition of FIDUCIARY RELATIONSHIP [Internet]. Available from: https://www.merriamwebster.com/legal/fiduciary+relationship. Accessed July 6, 2019. 8. Carlisle JR. Informed consent in physical medicine and rehabilitation: The physician/patient relationship—the doctor as a fiduciary. Phys Med Rehabil Clin N Am. 2002;13(2):213–24. 9. Malm H, May T, Francis LP, Omer SB, Salmon DA, Hood R. Ethics, pandemics, and the duty to treat. Am J Bioeth. 2008;8(8):4–19. 10. Francis LP, Battin MP, Jacobson JA, Smith CB, Botkin J. How infectious diseases got left out – and what this omission might have meant for bioethics. Bioethics. 2005;19(4):307–22. 11. Alexander GC, Wynia MK. Ready and willing? Physicians’ sense of preparedness for bioterrorism. Health Affairs [Internet]. Available from: https:// w w w. h e a l t h a f f a i r s. o r g / d o i / f u l l / 1 0 . 1 3 7 7 / hlthaff.22.5.189. Accessed July 6, 2019. 12. Clark CC. In harm’s way: AMA physicians and the duty to treat. J Med Philos. 2005;30(1):65–87.

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13. Fleck L. Clinicians’ fears, high-risk patients, and the duty to treat. Point – are there moral obligations to treat SARS patients? [Internet]. Medical Humanities Report; 2003 [cited 6 Jul 2019]. Available from: https://www.­bioethics.­msu.­edu/images/stories/file/ MHR/mhr_25_1.­pdf. Accessed July 6, 2019. 14. Heyd D. Supererogation. In: Zalta EN, editor. The Stanford Encyclopedia of philosophy [Internet]: Metaphysics Research Lab, Stanford University; 2016; [cited 2019 Jul 8]. Available from: https://plato.­ stanford.­edu/archives/spr2016/entries/supererogation/. Accessed July 8, 2019. 15. Declaration of Geneva: physician’s oath [Internet]. [cited 6 Jul 2019]. Available from: http://www.­cirp.­ org/library/ethics/geneva/. Accessed July 6, 2019. 16. Modern Hippocratic Oath holds the underlying values of medicine in a digital world – David Geffen School of Medicine – Los Angeles, CA [Internet]. [cited 8 Jul 2019]. Available from: https://medschool.­ ucla.­e du/body.­c fm?id=1158&action=detail& ref=1056. Accessed July 8, 2019. 17. AMA Council on Ethics and Judicial Affairs. AMA code of medical ethics’ opinion on physician duty to treat. AMA J Ethics. 2010;12(6):459. Available at h t t p s : / / j o u r n a l o f e t h i c s.­a m a - a s s n .­o rg / s i t e s / journalofethics.­ama-assn.­org/files/2018-06/vm-1006.­ pdf. Accessed 6 July 6, 2019. 18. American Academy of Dermatology. Code of medical ethics for dermatologists [Internet]. 2014 [cited 6 Jul 2019]. Available from: https://www.­aad.­org/ forms/policies/uploads/ar/ar%20code%20of%20 medical%20ethics%20for%20dermatologists.­p df. Accessed July 6, 2019. 19. AMA principles of medical ethics [Internet]. American Medical Association. [cited 15 May 2019]. Available from: https://www.­ama-assn.­org/about/ publications-newsletters/ama-principles-medicalethics. Accessed May 15, 2019. 20. McMichael J, Stoff BK. Comment on: “I didn’t sign on to die”: the dermatologist’s ethical obligations during a deadly epidemic. J Am Acad Dermatol. 2017;76(4):e139. 21. Tomlinson T. Clinicians’ fears, high-risk patients, & the duty to treat. Counterpoint – caring for high-risk patients: a duty or a virtue? [Internet]. 2003 [cited 6 Jul 2019]. Available from: https://www.­bioethics.­msu.­ edu/images/stories/file/MHR/mhr_25_1.­p df. Accessed July 6, 2019. 22. Albertsen A, Thaysen JD. Distributive justice and the harm to medical professionals fighting epidemics. J Med Ethics. 2017;43(12):861–4.

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Ethical Responsibilities to Economically Disadvantaged and Marginalized Patients Anne L. Housholder Contents Discussion – 278 Conclusion – 288 References – 288

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_28

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nnLearning Objectives 1. Understand health and health and healthcare disparities research and the role for dermatologists in addressing these disparities. 2. Identify potentially marginalized patients and strategies for providing ethical and excellent care to these patients. 3. Recognize the ethical responsibilities that dermatologists have to their colleagues within both the dermatological and the wider medical communities in caring for potentially marginalized patients.

>>Points of Emphasis

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55 Addressing health and health care disparities is an important ethical responsibility of the entire medical community, which will require the active participation of committed dermatologists. 55 All entities that receive federal financial assistance are required to take reasonable steps to provide meaningful access for patients with limited English proficiency (LEP). 55 Resource-limited settings, including free medical clinics, may require particular care to uphold the highest ethical standards to meet the standards of justice, dignity for the patient and beneficence. 55 Moral distress describes the anger, frustration and disillusionment of health care professionals due to systemic forces leading to a perceived inability to provide excellent medical care to their patients.

Discussion How does the medical community equitably care for the sickest patients and those most in need of medical care? For a busy dermatologist, it is tempting to avoid patients who are more difficult to treat or whose insurance offers lower reimbursement. A private practitioner may worry about their bottom line, or a physician employee of a group practice may be powerless over managerial decisions. However, no dermatologist exists in isolation. Every dermatologist has learned their skill by

the privilege of learning from the collective knowledge of the dermatological community, who together hold the deepest knowledge and most experience in treating skin diseases. Dermatologists strive not just for competence in managing skin diseases but believe they have the training and experience to be called experts. There is no more critical and ethical need for experts and excellence in medicine than in addressing health disparities. The cases in this chapter explore ethical excellence in caring for those in need. Excellence, in ancient Greek (arete) defined what Socrates, Plato and Aristotle fundamentally believed their philosophical pursuits to be. Before Western philosophy had ethics as an epistemological category, it had excellence. Similarly, before Western medicine had a discipline called Medical Ethics, it had a desire to define what excellence as a physician entails. The Hippocratic oath, written sometime between the fifth and third centuries BCE, provides an outline of what excellence in medicine looked like for those who held it. By taking the oath, a community of physicians joined together in their pursuit of the highest excellences of their field. Medical communities ever since have created their own codes of excellence. Recently, the American Academy of Dermatology created a voluntary ethics code (7 Box 28.1) that seeks to name some of the core excellences for the ethical practice of dermatology [1]. To be an excellent and ethical dermatologist requires clinical excellence coupled with taking responsibility for those most in need and being a good colleague to other dermatologists and physicians. Within the AAD pledge, “provide care that adheres to professional standards of practice” addresses the foundational reality that ethical excellence requires clinical excellence in every patient encounter. However, clinical excellence is only one aspect of ethical excellence. [I will] “put my patient interests above other interests” addresses virtues that have historically been expected of physicians. The fiduciary responsibility of doctors to put the patient’s interests above their own is based in medical ethics, particularly justice and the fair distribution of care [2]. Additionally, the legal system, par 

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ticularly malpractice jurisprudence, expects doctors to uphold a fiduciary responsibility towards their patients. In a limited way, this prohibits kickbacks or recommending unnecessary testing to increase profits. In a larger sense, it is an act of empathy to consider what is truly in the patient’s best interest and act out of that empathy even if it may be easier or preferable for the dermatologist to act differently. These two pledges govern the ethical conduct of the doctor-patient relationship once it is established – to meet the community’s standards of care and to do so without exploiting that relationship for inappropriate personal gain. The AAD pledge asks a dermatologist to seek excellence as a physician well beyond the limits of the doctor-patient responsibility. “I will provide care to those in need” suggests responsibility to those not yet one’s patients. It is clear that some personal interpretation will be necessary for a dermatologist taking this pledge. Are those in need people living below the poverty line? Are they the uninsured? Is there a minimal ethical duty, as to care for 5% non-reimbursed and 95% reimbursed care in your practice or some other metric? Or is care of those in need purely supererogatory, a good thing to do but not ethically required? Does it mean performing hospital consults? How to incorporate compliance with this pledge will be different for dermatologists in various practice locations. In fact, it is only because this pledge is voluntary that it does not directly conflict with the American Medical Associations Code of Medical Ethics, which includes: “A physician shall, in the provision of appropriate patient care, except in emergencies, be free to choose whom to serve, with whom to associate, and the environment in which to provide medical care” [3]. Physicians generally may accept patients, discharge patients (if done in an ethically and legally appropriate manner), limit their expertise within their field, chose which insurance plans to contract with, and set their fees as they wish. However, to see one’s role as a dermatologist as completely separate from the responsibility of all dermatologists to provide necessary expertise for the patients most in

need and with the most severe skin conditions is to fail to respect the dignity of all patients and to be a responsible colleague. Respecting the dignity of all patients has been a core value of medicine since the Hippocratic age of medicine. The AAD pledge’s “I will provide care to those in need” is a statement of the universal dignity of all patients. All persons who are sick and in need of care are worthy of receiving that care. Caring for patients, whatever their diagnosis or ability to pay, is a privilege. To treat economically disadvantaged patients differently from better resourced patients in the clinical encounter is thoroughly ethically unsupportable. To specialize in a particular field within dermatology may limit the scope of a practice while still respecting the dignity of all patients if any patients with such diseases have access to your super-specialty. However, it is deeply ethically concerning for dermatologists to believe that their services are too valuable to care for patients who are uninsured or have lower reimbursing insurance. Every patient in need deserves excellent care from dermatologists who respect their intrinsic dignity. Collegiality is the final ethical excellence of the AAD pledge. An excellent dermatologist will “foster collegiality through interaction with the medical community”. Dermatologists cannot practice ethical medicine outside of relationships with other physicians and dermatologists. Dermatology’s place within the house of medicine is particularly important. As a small and predominantly outpatient specialty, it is particularly important that dermatologists represent our specialty well when colleagues in other fields call upon dermatological expertise. Fostering collegiality requires taking a broader view of one’s own personal role in dermatology. An ethically excellent dermatologist sees their place in the medical community as one that takes on responsibilities for accomplishing the broader goals of medicine as they apply to diseases of the skin. Collaboration in the care of complex medical patients, care for the indigent, and willingness to perform hospital consultations are examples of our ethical responsibility in the house of medicine.

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>>Points of Emphasis

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55 To see one’s role as a dermatologist as completely separate from the responsibility of all dermatologists to provide necessary expertise for the patients most in need and with the most severe skin conditions is to fail to respect the dignity of all patients and to be a responsible colleague. 55 To treat economically disadvantaged patients differently from better resourced patients in the clinical encounter is ethically unsupportable. 55 Every patient in need deserves excellent care from dermatologists who respect their intrinsic dignity. 55 Collaboration in the care of complex medical patients, care for the indigent, and willingness to perform hospital consultations are examples of our ethical responsibilities in the house of medicine.

One of the most important current goals of medicine in its broadest context is understanding and ameliorating health disparities. The Centers for Disease Control defines health disparities as “preventable differences in the burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations” [4]. Health disparities become apparent when comparing health outcomes due to racial, gender, age, socioeconomic, educational attainment and geographic location differences. Not included in health disparities are differences due to unavoidable or unpreventable differences, such as increased breast cancer rates in women compared to men, genetic diseases with increased prevalence in certain ethnic populations, or all-­cause mortality in 80-yearolds compared to 20-year-olds. However, health disparities can exist for groups that experienced historic societal privilege. For example, non-Hispanic white men have worse melanoma survival than non-Hispanic white women [5]. Additionally, the Institute of Medicine defines healthcare disparities as “racial or ethnic differences in the quality of healthcare that are not due to access-related factors or clinical needs, preferences, and appropriate-

ness of intervention” [6]. Healthcare disparities are a particularly concerning contributor to health disparities and require awareness and assessment by every member of the healthcare system. Cultural behaviors, expectations and biases work in complex ways within populations to produce disparate outcomes. Collectively, all of the non-biological factors that influence health disparities are social determinants of health. Any individual participates in multiple social contexts and is influenced by multiple determinants at the same time. Thus, health/health care disparities are intersectional, such that a person who is a member of multiple disadvantaged groups simultaneously may experience more complex and more severe disadvantages than members of the same groups. For example, black men who have sex with men (MSM) have lower use of pre-exposure prophylaxis (PrEP) for HIV despite suffering the greatest burden of new HIV diagnoses when compared to non-­ Hispanic white MSM [6]. Although both groups shared concerns about receiving culturally insensitive health care, black participants had increased levels of medical mistrust. Medical mistrust occurs in higher frequency in black populations regardless of geographic location or sexual orientation. Black MSM experience compounded negative effects from racial and sexual orientation bias. Strategies to address social determinants of health must take these complex intersections into account. Health disparities are necessarily “avoidable, unnecessary and unjust” [7]. Although justice is one of the core principles of medical ethics identified by Beaucamp and Childress in Principles of Biomedical Ethics, it is one of the most challenging to address within medicine [8]. Justice requires considering the widest contexts of medical care – the relationship between the rights and needs of an individual patient, the medical system, and the social construct in which they exist. Justice truly cannot occur in a vacuum. Health disparities and health care disparities arise from systemic injustices, which are necessarily larger than the individual decisions of any one health care provider. Systemic injustice is built on both the long shadow cast

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by deep and serious historical injustices that damage mistreated groups’ trust and by ongoing biases that influence institutional policies. Macro-level systemic realities that individuals may feel powerless to change are not the sole cause of unequal and unjust health and health care disparities. Biases among medical providers, whether they are aware of such biases or not, are a necessary part of translating systemic injustices in negative outcomes that members of historically marginalized populations experience. In the BeWELL (Black Women’s Experience Living with Lupus) cohort, 27.6% of Black women with SLE reported racial discrimination while “getting medical care” [9]. For black women with SLE, increasing frequency of racial discrimination in all settings was associated with greater disease activity and organ damage. The dermatological literature is just beginning to catalogue health disparities in diseases of the skin. Non-Hispanic black patients are diagnosed with more advanced melanoma and have poorer outcomes for their stage [10]. Patients with Medicaid insurance face delays in accessing dermatological care both in general and specifically for surgical excision of melanoma [11, 12]. Hidradenitis supprativa is associated with low socioeconomic status [13]. Racial and socioeconomic factors influence incidence and persistence of atopic dermatitis [14]. Lower socioeconomic status (SES) individuals and residents of more economically deprived neighborhoods have significantly lower rates of cancer survival than higher SES individuals and residents of more affluent neighborhoods [15]. Even within lower SES populations, African-American patients have higher mortality rates than white patients. Although behaviors such as smoking and diet as well as environmental exposures may contribute to increased incidence of cancer, the lower rates of cancer survival may relate not only to later stage diagnosis but also inferior medical care. Within lower SES populations, African-American patients have lower healthcare access and use. Similarly, the data for mycosis fungoides (MF) shows African-American patients having higher tumor (T) stage at diagnosis than patients of

other ethnicities [16]. African-American MF patients had a significantly lower overall survival than Asian and white patients [17]. Understanding and addressing health disparities in dermatology will require substantial research interest and funding. However, research and data will not in and of themselves resolve the disparities that economically disadvantaged and marginalized patients face. The medical literature commonly presents health disparities research based in large metadata analysis, but it can become difficult as an individual provider to relate these data to the care of an individual patient. Nevertheless, the actual and individual outcomes of patients in low socioeconomic groups are the truly relevant concern. Improvement in health outcomes in dermatology will ultimately only come from the hard work of practicing dermatologists caring for one patient at a time. Particularly for healthcare disparities, physician attention to the particular needs of these patients and personal commitments to provide excellent care to all patients are necessary. >>Points of Emphasis 55 Health disparities are defined by the CDC as “preventable differences in the burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations.” 55 Healthcare disparities are defined by the Institute of Medicine as “racial or ethnic differences in the quality of healthcare that are not due to access-related factors or clinical needs, preferences, and appropriateness of intervention.” 55 Health/health care disparities are intersectional, such that a person who is a member of multiple disadvantaged groups simultaneously may experience more complex and more severe disadvantages than members of the same groups. Particularly for healthcare disparities, physician attention to the particular needs of economically disadvantaged or marginalized patients and personal commitments to provide excellent care to all patients are necessary.

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Case Scenarios and Discussions

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Case 1 You have been the sole owner of a dermatology practice for 35 years. Particularly over the last 15 years, you have noticed the percentage of Medicaid patients has increased dramatically in your practice. When you began practicing, several other independent and small-group practices also treated Medicaid patients. You have recently realized you are the only practice in your area accepting your state’s Medicaid plans. When you bring this up with a colleague with whom you share call and have had a good relationship for many years, she cites the declining reimbursement and reports a higher no-show rate in these patients. Another colleague reports that he stopped taking Medicaid when he sold his practice to a private equity group. You wonder whether you should also close your practice to new Medicaid patients. Discussion The dermatologist has treated Medicaid patients for many years but has noticed that her local colleagues are not doing the same. Although accepting Medicaid is a decision that each practice makes independently, the trend towards limiting practices to only the best reimbursed patients has trickle-down effects on colleagues and the dermatological health of the community. As a dermatologist in independent practice, she has a great deal of control over her own actions; however, her actions will be influenced by the choices of many other stakeholders with their own interests. State legislatures that make decisions about Medicaid, insurance companies that administer Medicaid plans, medical care systems and her colleagues all impact her ability to practice dermatology in a way that is ethically and economically feasible. The dermatologist who wishes to take her responsibility for the care of underserved patients seriously must reflect on both her ethical and moral reasoning for doing so. She should use this self-reflection to see beyond her patient interactions to consider how she can be a moral dermatologist

committed to the needs of underserved patients in her wider community. There are multiple frameworks for determining what is ethically right. It isn’t enough to ask simply, “What do I want to do?” but also, “How will my actions affect others?” The inherent need to take other’s needs and rights into account is present in classical ethical frameworks from Kant’s deontology to Mill’s consequentialism. Using the traditional ethical frameworks of deontology and consequentialism, the dermatologist can easily provide ethical support for her decision to continue to treat Medicaid patients. The deontological dermatologist in Case 1 could easily say, “I wish that all dermatologists would take care of Medicaid patients.” It is much more difficult to make a categorical imperative out of the inverse. The colleagues who do not take Medicaid are unlikely to say, “I wish that all dermatologists denied care to Medicaid recipients.” The dermatologist as a consequentialist (or anyone who has ever had a severe pruritic rash) would certainly say that the alleviation of suffering in the Medicaid patients is of greater benefit than the suffering of the dermatologist in loss of revenue from one encounter. It would only be at the point the dermatologist was planning to close her clinic if she took any more Medicaid patients that the consequentialist might say the suffering of all her patients who are now abandoned is worth her denying care to Medicaid patients. Classical philosophical ethics would in either case lead the dermatologist to serve the most Medicaid patients she can without abandoning her practice and her other patients. However, the dermatologist must acknowledge the world is not governed by pure ethics. Her independent colleagues and the owners of health systems that employ dermatologists will increasingly decide it is not to their personal benefit to treat Medicaid patients. In this case, the dermatologist must turn from philosophical ethics to acknowledge that cases such as these ask a question of personal moral reasoning. Personal morals may come from philo-

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sophical reflection, but often are born from religious identities, family values, and personal histories. They are often deeply embedded within cultures and upbringings. What are her principles and habits that guide her as a dermatologist? Is treating Medicaid patients consistent with this dermatologist’s values? These are questions only she can answer, but to do so, she will need to engage in honest and responsible self-reflection. Ultimately, she must decide that it is her responsibility as a doctor to care for Medicaid patients in need. Medical communities and professional organizations can support doctor’s moral commitments. Committing to care for the most vulnerable and underserved patients, including Medicaid patients, is included in the AAD Ethics pledge commitment to “provide care to those in need”. However, professional organizations and state dermatological societies may also effectively lobby for Medicaid patients and the doctors that care for them at the state and national levels. The responsible dermatologist might choose to lead advocacy and lobbying projects within her state dermatological society to improve reimbursement and expand access to effective treatments for all patients. The responsible dermatologist will consider whether she can increase her role in helping her primary care colleagues manage simple dermatological conditions well. Greater than 80 percent of internal medicine residents reported themselves as uncomfortable or very uncomfortable managing dermatological concerns in emergency, inpatient and ambulatory settings [19]. Nevertheless, in one study 36.5% of patients who presented to their primary care physician had at least one skin problem [20]. Working specifically with Federally Qualified Health Centers to improve their management of dermatological conditions, participating in philanthropic teledermatology services for free health care clinics in her state, serving as a preceptor for primary care residents are all ways she can uphold the AAD pledge’s call to both care for those in need and foster collegiality. The responsible dermatologist can also consider her own practice habits. Lower socioeconomic status (SES) patients are concerned

about the total affordability of their visit [21]. They want to have access to upfront costs, particularly the coverage of any diagnostic testing. It is a misconception that low SES and Medicaid patients are not working and so should be able to attend appointments easily. Sixty-three percent of non-elderly, non-disabled adult Medicaid recipients have full-time or part-time jobs [22]. Low-wage jobs are often shift work with little control over their schedule and no medical leave. Public transportation is timeconsuming and may not be easily accessible. These patients desired appointments outside of regular business hours and availability of electronic communication [21]. Finally, lower SES patients desire the same things that all patients want from their physicians: listening to them, spending more time getting to know them, and being sensitive to their preferences. A dermatologist who chooses to care for underserved patients should consider leadership in  local and state advocacy and building relationships with primary care providers as important parts of caring for these patients. She may find rich personal rewards from honing the skills caring for underserved populations requires: creativity, humility, and flexibility. Taking to heart the needs of underserved patients offers rich opportunities to provide desperately needed medical care, to teach patients and residents, and become an advocate within her community and state.

Box 28.1 AAD’s Professionalism and Ethics committee PLEDGE In acting as a dermatologist, I will strive to:  

1. Put my patients’ welfare above other interests;

 

2. Provide care that adheres to professional standards of practice;

 

3. Provide care for those in need; and

 

4. Foster collegiality through interaction with the medical community.

Reproduced with permission from the American Academy of Dermatology. Copyright @2019. All rights reserved.

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Case 2 An adult man comes in for a first time visit for moderate plaque psoriasis, which has failed potent topical steroids prescribed by his primary care physician. The patient’s native language is Spanish, but he denied needing a Spanish interpreter. His 12-year-­old son is in the room with his father. He occasionally re-phrases what his father says for you and translates words his father does not understand. You would like to begin oral methotrexate for this patient. You become concerned that the language barrier has caused you to be unsure whether this patient understands the dosage schedule, lab monitoring and potential risks and side effects of this medication. What should you do? Patients with limited English proficiency (LEP) are included as a protected class under Title VI of the 1964 Civil Rights Act, which requires recipients of Federal financial assistance to take reasonable steps to make their programs, services and activities accessible to LEP patients [23]. In 2003, the Department of Health and Human Services published guidance for providing access to translation services for LEP patients (7 Box 28.2). DHS makes clear that what constitutes reasonable steps for a provider are situational, such that reasonable steps for small practices are not the same as those for large health systems. These guidelines may help dermatologists consider what is ethically preferable within their practice setting. The risks of poor communication with LEP patients are significant. One study concluded that 1 in 40 malpractice suits were related to a failure to provide appropriate interpretation services [24]. Additionally, LEP patients who have unmet needs for interpretation services have the lowest satisfaction with the interpersonal aspects of their care [25]. A dermatologist who desires to provide excellent medical care to all patients should consider what is the highest quality translation service that is feasible within the practice and provide the staff with proper training and resources to use these resources effectively. It is certainly tempting for the dermatologist to choose whatever is the fastest, easiest  

and least expensive means of communicating with LEP patients. In this case, the 12-year-old son has been providing ad hoc services, which may have been appropriate when lower risk topical medications were being used. DHS guidance suggests that family members may be used for translation services [18]. However, studies have shown that family members as translators are less likely than trained interpreters to correctly relay important information related to prescription medications [26]. For a medication such as methotrexate that requires an unusual dosing frequency and regular lab monitoring, relying solely on a 12-year-old translator may not be sufficient. Similarly, discussing highly sensitive information through family member translators should be avoided. If the patient, the translator, or the dermatologist has any reservations about family member translation, an alternate source of translation should be provided. It is preferable for the dermatologist to specifically request to use a translation service. If the dermatologist has any concerns about comprehension it is better to say, “these directions are tricky and I want to make absolutely sure I explain them fully” even for patients that might not have requested translation services. Although translation services are infrequently covered as an independently billed item, finding a translation service that is cost effective and training staff so that they can easily use the system can increase everyone’s satisfaction and frequency of use. In some high-density areas, hiring bilingual staff and including translation service training in their job may be effective. Bilingual staff should not be required to provide translation services if they have not been adequately trained or feel uncomfortable in that role. Non-clinical staff providing in-room translation should receive additional HIPAA and patient-privacy education. Dermatologists who are bilingual should also be sure to recognize their limitations if they are non-native speakers. Native-speaking dermatologists may also benefit from educational resources in medical translation. Most hospital systems require all staff to pass a test to

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be able to serve as a translator regardless of their native fluency. Effective medical translation is valuable to the practice and ideally should be supported and reimbursed as such. Written instructions in the patient’s native language are not an appropriate replacement for translation services. However, providing patients with education in multiple formats increases understanding and correct use of medications. The dermatologist should work with the pharmacist to make sure that the patient instructions are provided in the language of the patient. There is significant room for improvement in native-language patient education materials. The dermatologist might also get involved in advocacy and leadership for creating educational materials in diverse languages. Taking care of patients across a language barrier can be challenging. It may seem desirable to satisfy the minimal ethical and legal requirements in the moment to get on to the next patient. However, a commitment to excellence would require the dermatologist to be constantly looking for better ways to connect meaningfully to each patient.

Box 28.2 HHS factors to determine the Title VI obligation to ensure meaningful access for LEP persons [18] 1. The number or proportion of LEP persons eligible to be served or likely to be encountered 2. The frequency with which LEP individuals come in contact with the program 3. The nature and importance of the program, activity or service provided 4. The resources available to the grantee/recipient and the costs of interpretation/translation services

Case 3 You decided to retire from your practice as a general dermatologist in a multi-specialty group. A friend from medical school is a general physician who works at a well-­established free clinic 1 day a week. The clinic sees a wide range of patients, including homeless and

undocumented men, women and children. At his encouragement, you agree to see patients twice a month at this clinic. Although the clinic already provides liquid nitrogen for treating warts, it does not perform biopsies. You talk to a dermatopathologist friend who will process and read biopsy specimens at no charge. The clinic is able to get disposable biopsy trays, curettes and excision trays from a charity organization providing medical supplies for volunteer groups. A few weeks into your clinic, a 60-year-old homeless man presents with a 1.5 cm pearly nodule on his upper cheek near the lower eyelid. You are sure the Mohs surgeon you worked with in the past would see the patient, but his suburban practice is not accessible by public transportation. You have not done a large excision on the cheek for many years, and are concerned that it would affect the function of his lower eyelid. You also know that this man may not show up for his followup visits at the free clinic, and you wonder if performing a presumptive electrodessication and curettage at the time of biopsy would be a better course of action. There is a tragically long history of allowing for different ethical standards being applied in resource-limited locations. In international settings, these include undergraduate students being permitted to perform high-risk interventions such as lumbar punctures and unsupervised vaginal deliveries [27]. In the United States, ethical responses to historic injustices, such as the Tuskegee syphilis study, have reduced appalling examples of unequal and unjust care for historically marginalized groups. Nevertheless, the fundamental question often remains in the minds of physicians providing care to underserved populations of how much deviation from best practices can be ethically tolerated. The solution to this problem lies not in deciding whether a lower bar can be permitted but in returning to the basic principles of bioethics and asking how they can best be applied to this resource-limited situation. The first principle of bioethics is autonomy. Autonomy describes the ability of adults and mature minors to use reason to determine what is in their own best interest. Physicians assess a

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patient’s capacity to make autonomous decisions. A patient with capacity can understand the situation, appreciate the consequences of that decision, and express a desired course of action. Homeless individuals have higher rates of major mental health disorders, alcohol and substance abuse, as well as intellectual impairments [28]. Any of those factors may influence the patient’s ability to have capacity, but none de facto removes his decision making capacity. The dermatologist and patient should have a thorough discussion of each option, including no treatment and Mohs surgery. If traveling for the Mohs procedure is not feasible, the dermatologist may be able to support a decision for excision or electrodesiccation and curettage (ED&C) on the grounds of beneficence. Beneficence requires that the action the doctor acts in the best interest of the patient. However, beneficence does not demand that physicians and patients only choose the most efficacious or least dangerous treatment. With adequate understanding from the patient that the skin cancer may come back and be more difficult to treat, the doctor and patient may both feel that presumptive electrodessication and curettage is the best choice for this particular patient. The doctor and patient should walk away from any encounter, regardless of setting, comfortable that they made the best decision available to them in that setting. If the patient says, “Doc, just cut it out and stitch it up. I’m sure it will be fine.” The ethical dermatologist still has an obligation to consider their own participation in the procedure. Nonmaleficence requires physicians to not cause harm. It is rare for physician to intend harm but more common for the treatments that physicians prescribe to cause harm. A truly unethical physician might think, “I haven’t done a major surgery on the face in so many years, I might like to try to see if I still can.” More often, the question presents itself as how imperfect a situation is he willing to allow before he considers the risks too great to continue. The dermatologist may find he has a surgical tray, gets everything set up and finds he will have to use a poor-quality disposable cautery device. At this point, he may need to

reassess if the benefits of an excision outweigh the harms and if alternatives exist. The dermatologist in a resource-limited setting should remain vigilant to not put himself and his patient in an unsafe situation. The final principle of justice is often the most difficult to apply to individual patient care decisions. Bedside rationing of scarce resources can be a fraught but necessary reality in resource-limited locations around the world. In this case, the dermatologist’s time is a scarce resource, and the dermatologist may reasonably defer less urgent cases to attend to this patient. If the clinic has a small fund to pay for transportation for patients for testing or procedures, this patient’s case for assistance getting to the Mohs appointment might be considered against other competing needs for those resources. When considering allocation of scarce resources, the leadership of the free health clinic should consider “ordinary allocations” to include what would be a reasonable budget for travel to appointments that all clients should be able to access as needed and how to fairly distribute this resource [29]. Working in resource-limited situations requires flexibility and creativity on the part of dermatologist. Nonetheless, the dermatologist in this setting is held to the same ethical standards as any other. It may be that the realities of the patient’s situation weigh into the ethical decisions but they do not alter the ethical standards. The patient should have the procedure that affords him the greatest benefit while taking into account which risks are the most tolerable to him and to the dermatologist. He should have equal access to all resources available to him. Case 4 As a dermatologist in a mid-sized city without an academic medical center or cutaneous lymphoma expert, you have a long-standing relationship with a 70-year-­old African American woman who had stage IB Cutaneous T-cell Lymphoma (CTCL) for many years. She was treated initially with broadband UVB phototherapy, followed by several years of PUVA and topical steroids. Historically the patient would have periods of several months of con-

287 Ethical Responsibilities to Economically Disadvantaged and Marginalized Patients

sistent attendance at twice weekly PUVA treatment attendance followed by loss to follow-up for weeks to a few months at a time when she had to deal with various family crises. She has a low socioeconomic background and relies solely on her social security income. She ultimately progressed to stage IIA, and her initial plaques and tumors improved with local radiotherapy. Interferon-alpha has been tried, but she was non-compliant and never regularly took the medicine due to her severe asthma and recurrent infections. She underwent total skin electron beam irradiation which achieved a 2-year remission. Most recently, she has been on oral bexarotene. After another family crisis, she has missed several appointments and discontinued all of her therapies. When she returns to clinic, she has new tumors. Restaging did not reveal internal disease. You are now considering how to manage this patient. She is not able to travel for a second opinion at an academic CTCL referral center. You are concerned that although her disease warrants aggressive treatment, high-risk medications may be more immediately dangerous to her especially in view of her history of intermittent non-compliance and social situation. The dermatologist may experience moral distress in caring for this medically and socially complex patient. Moral distress describes a feeling of hopelessness or helplessness on the part of medical providers. The dermatologist has been providing high quality medical care; the patient has been doing her best to care for herself within her abilities and social situation. Nevertheless, the patient’s medical comorbidities and the limitations of her resources have influenced the course of her disease. In turn, the dermatologist may feel distressed because she knows there are beneficial treatments that seem inaccessible because of the patient’s economic situation. The dermatologist is right to stop and consider what is right for this patient at this time. From a classical ethical perspective, the dermatologist is struggling with the balance between beneficence and nonmaleficence. There are clearly medical treatments that could benefit this patient. In this setting, it is completely

appropriate for the dermatologist to recognize her limitations. The dermatologist has significant concerns that giving this patient a highrisk medication may do more harm than good. Tightly regulating the patent’s medication so that she attends clinic may seem safer; however, if she has frequent treatment interruptions, she may not see any benefits for the risks. The dermatologist rightly feels she is in a difficult position with this patient, where the line between helping and hurting is very hard to discern. What this dermatologist should not do is abandon this patient. Although the dermatologist may wish that a more experienced dermatologist could care for this patient, she does not have that recourse available to her. Although advanced CTCL is best managed in multidisciplinary specialty clinics and a private practice dermatologist cannot replicate the advantages of that care, the dermatologist may be able to partner with a local oncologist. The oncology clinic may have additional resources such as social workers and therapists that can be advantageous to the patient. However, the dermatologist should maintain active involvement in the patient’s care. The dermatologist should seek advice from the nearest CTCL expert even if the patient cannot travel to that clinic. Although the final decision may be less aggressive CTCL treatment, the dermatologist and the patient should reach that decision having fully explored all available options. There are many barriers to care that affect lower SES patients. It is important to maintain empathy for patients who struggle to attend clinics, particularly when they have limited resources. Resource limitations affect the lives of patients and their medical care in ways that are not easily resolved. However, providing excellent care for this patient will require the dermatologist to look outside her own clinic for resources to overcome what barriers they can. The ethical decision is not just balancing nonmaleficence with beneficence as though they are static goods. The ethical decision is looking for how to increase the likelihood of being able to do good for this patient and decrease the risk of doing harm.

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Conclusion

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Caring for patients is challenging and demands excellence at all times. Caring for patients who come from historically marginalized communities adds additional challenges. In the cases above, we have explored the ethical challenges of these patients. Dermatologists have an ethical obligation to provide excellent care to all patient that minimizes the potential health disparities. In providing ethical and excellent care to potentially marginalized patients, dermatologists will have to affirm their commitments to the dignity of all patients and become advocates for better resources. This may require becoming an advocate for culturally competent educational materials and political advocacy. In this process, dermatologists will expand their collegial relationships with pharmacists, primary care providers, patient advocacy groups, and state and national dermatology associations. Health disparities in dermatology may seem daunting. Dermatologists can start by addressing the challenges of the marginalized patients they encounter with excellence. Then, they must become advocates in the dermatological community to ensure that there is room available for every potentially marginalized patient to receive excellent dermatological care.

References 1. American Academy of Dermatology: Professionalism and Ethics Resource Center. 2019. https://server.­aad.­ org/form/ethicspledge/? Accessed 1 Sept 2019. 2. Beauchamp TL, Childress JF.  Principles of bio medical ethics. 7th ed. New York: Oxford University Press; 2013. 3. American Medical Association [Internet]. Chicago: The Association. Available from: https://www.­ ama-assn.­org/sites/ama-assn.­org/files/corp/mediabrowser/principles-of-medical-ethics.­pdf Accessed 1 Sept 2019. 4. CDC.  Community health and program services (CHAPS): health disparities among racial/ethnic populations. Atlanta: U.S.  Department of Health and Human Services; 2008. 5. Khosrotehrani K. Melanoma survival is superior in females across all tumour stage but is influenced by age. Arch Dermatol Res. 2015;307(8):731–40. 6. Institute of Medicine. Unequal treatment: confronting racial and ethnic disparities in health care (with

CD). Washington, DC: The National Academies Press; 2003. 7. Cahill S, Taylor SW, Elsesser SA, Mena L, Hickson D, Mayer KH.  Stigma, medical mistrust, and perceived racism may affect PrEP awareness and uptake in black compared to white gay and bisexual men in Jackson, Mississippi and Boston, Massachusetts. AIDS Care. 2017;29(11):1351–8. 8. Whitehead M. The concepts and principles of equity and health. Int J Health Serv. 1992;22:429–45. 9. Chae DH, Martz CD, Fuller-Rowell TE, Spears EC, Smith TTG, Huter EA, et al. Racial discrimination, disease activity, and organ damage: the black woman’s experiences living with lupus (BeWell) study. Am J Epidemiol. 2019;188:1434–43. 10. Harvey VM, Patel H, Sandhu S, Wallington SF, Hinds G.  Social determinants of racial and ethnic disparities in cutaneous melanoma outcomes. Cancer Control. 2014;21(4):343–9. 11. Alghothani L, Jacks SK, Vander Horst A, Zirwas MJ.  Disparities in access to dermatologic care according to insurance type. Arch Dermatol. 2012;148(8):956–7. 12. Adamson AS, Zhou L, Baggett CD, Thomas NE, Meyer A.  Association of delays in surgery for melanoma with insurance type. JAMA Dermatol. 2017;153(11):1106–13. 13. Wertenteil S, Strunk A, Garg A.  Association of Low Socioeconomic Status with Hidradenitis Suppurativa in the United States. JAMA Dermatol. 2018;154(9):1086–8. 14. Kim Y, Blomberg M, Rifas-Shiman SL, Camargo CA, Gold DR, Thyssen JP, et al. Racial/ethnic differences in incidence and persistence of childhood atopic dermatitis. J Invest Dermatol. 2019;139:827–34. 15. Singh GK, Jemal A.  Socioeconomic and racial/ethnic disparities in cancer mortality, incidence, and survival in the United States, 1950–2014: over six decades of changing patterns and widening inequalities. J Environ Public Health. 2017;2017:2819372. https://doi.org/10.1155/2017/2819372. 16. Wilson LD, Hinds GA, Yu JB.  Age, race, sex, stage, and incidence of cutaneous lymphoma. Clin Lymphoma Myeloma Leuk. 2012;12(5):291–6. 17. Su C, Nguyen KA, Bai HX, Cao Y, Tao Y, Xiao R, et  al. Racial disparity in mycosis fungoides: an analysis of 4495 cases from the US National Cancer Database. J Am Acad Dermatol. 2017;77(3):497–502. 18. Policy Guidance on the Prohibition Against National Origin Discrimination as It Affects Persons With Limited English Proficiency. Office for Civil Rights; Title VI of the Civil Rights Act of 1964. 67 FR 4968. Available at https://www.govinfo.gov/content/ pkg/FR-2002-02-01/pdf/02-2467.pdf. Accessed 28 November 2020. 19. Drucker AM, Cavalcanti RB, Wong BM, Walsh SR. Teaching dermatology to internal medicine residents: needs assessment survey and possible directions. J Cutan Med Surg. 2013;17:39–45. 20. Lowell BA, Froelich CW, Fedeman DG, Kirsner RS.  Dermatology in primary care: prevalence and

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patient disposition. J Am Acad Dermatol. 2001;45(2):250–5. 21. Kangovi S, Barg FK, Carter T, Ling JA, Shannon R, Grande D. Understanding why patients of low socioeconomic status prefer hospitals over ambulatory care. Health Aff (Millwood). 2013;32(7):1196–203. 22. Garfield R, Rudowitz R, Orgera K, Damico A.  Understanding the intersection of medicaid and work: what does the data say? [Internet]. Henry J Kaiser Foundation. Aug 8, 2019. https://www.­kff.­org/ medicaid/issue-brief/understanding-the-intersectionof-medicaid-and-work-what-does-the-data-say. Accessed 1 Sept 2019. 23. Civil Rights [Internet]. US Department of Health and Human Services. https://www.­hhs.­gov/civilrights/for-individuals/special-topics/limited-englishproficiency/index.­html. Accessed 1 Sept 2019. 24. Jacobs B, Ryan AM, Heinrichs KS, Weiss BD. Medical interpreters in outpatient practice. Ann Fam Med. 2018;16(1):70–6.

25. Baker DW, Hayes R, Fortier JP. Interpreter use and satisfaction with interpersonal aspects of care for Spanish-speaking patients. Med Care. 1998;36(10):1461–70. 26. Flores G, Laws MB, Mayo SJ, Zuckerman B, Abreu M, Medina L, et al. Errors in medical interpretation and their potential clinical consequences in pediatric encounters. Pediatrics. 2003;111:6–14. 27. Rowthorn V, Loh L, Evert J, Chung E, Lasker J. Not above the law: a legal and ethical analysis of shortterm experiences in global health. Ann Glob Health. 2019;85:79. 28. Stafford A, Wood JL. Tackling health disparities for people who are homeless? Start with social determinants. Int J Environ Res Public Health. 2017;14:1535. 29. Tilber JC, Sulmasy DP.  Context and scale: distinctions for improving debates about physician “rationing”. Philos Ethics Humanit Med. 2017;12:5.

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The Ethics of Skin Cancer Screening Benjamin K. Stoff and Jane M. Grant-Kels Contents

Introduction – 292 F ree Cancer Screening Events – 293 Frequent Skin Cancer Screening Examinations at the Request of Low-Risk Patients (“The Worried Well”) – 295

References – 297

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_29

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nnLearning Objectives 1. Outline the ethical arguments for and against free skin cancer screenings. 2. Explain competing ethical perspectives on requests for frequent skin examinations by patients at low risk for skin cancer.

..      Table 29.1  10 Principles for developing an effective health screening program Health condition

Latent or early symptomatic state Natural history should be understood

>>Points of Emphasis 55 Free skin cancer screening events must assess health outcomes of those being screened to support claims of improved public health and target underserved populations to substantiate justice-based assertions that they enhance access to care. Regulations constrain the nature of care provided at screenings and, therefore, limit establishing relationships between individuals and providers. 55 For patients at low risk of developing skin cancer, patient preferences for frequent skin exams (autonomy) must be balanced against what is reasonably beneficial for those patients (beneficence) and just to other patients seeking access to care who may have urgent dermatological needs (justice).

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Introduction The history of cancer screening can be traced back to the early twentieth century. The development of public health departments led to a shift in focus from treatment of acute diseases, like infections, to prevention of more chronic diseases, like cancer [1, 2]. With the rise in cancer screening programs came the need to develop frameworks by which to assess them, such as that proposed by Wilson and Junger (. Table 29.1) [3]. Controversy about cancer screening, particularly skin cancer screening, has developed and rages on today. A thorough review of this charged and complex topic is beyond the scope of this chapter, although excellent sources are available [4–6]. The United States Preventative Services Task Force (USPSTF) continues to conclude that evidence is insuffi 

Important public health problem

Screening test

Test should be suitable Acceptable to the population

Treatment

Accepted treatment Policy on whom to treat

Access

Facilities for diagnosis and treatment available

Cost

Cost of case detection should be reasonable

Overall

Continuous program – not one-time event

Adapted from [3]

cient to judge the balance of benefits and harms related to skin cancer screening in asymptomatic adults, although objections to this claim persist [7–9]. This chapter will narrow the focus of the debate to the ethical arguments surrounding skin cancer screening by two methods: 1. Free skin cancer screening events offered to the public. These are carried out predominantly through the AAD SPOTme® campaign, in which volunteer dermatologists offer one-time skin cancer screenings to the public, who are not established patients of the screeners. 2. Frequent TBSEs at the request of asymptomatic, but anxious patients at low risk of skin cancer (“the worried well”) by dermatologic care providers in the office. The scope of the chapter is limited to these topics because ethical viewpoints about them have been published in the medical literature, lend themselves to competing perspectives and follow sound moral reasoning.

293 The Ethics of Skin Cancer Screening

Free Cancer Screening Events The AAD SPOTme® skin cancer screening program is among the largest cancer screening efforts in the country. Over the course of 30  years, for example, SPOTme® events have led to the screening of over 2 million people in all 50 states in the US [10]. Volunteer screeners, who are dermatologists and members of AAD, have discovered >180,000 suspected skin cancers, including >20,000 suspected melanomas [10]. Advocates of the program emphasize its most fundamental goals: to reduce death from skin cancer and improve public health [11]. Moral theory provides a lens through which the ethics of these events can be examined (. Table 29.2). A utilitarian perspective focuses on whether skin cancer screening events promote the most good for the most people using a relatively simple metric laid out by the advocates of SPOTme®: reduction of death from skin cancer, specifically melanoma. Justice in bioethics is often applied to debates about access to care for underserved populations [12]. According to this theory, the morally relevant question for skin cancer screenings is: do these events provide meaningful access to care for underserved populations? Finally, the ethics of caring, often associated with feminist moral theory, emphasizes the value of relationships and emotion [12]. To uphold this theory, skin cancer screen 

..      Table 29.2  An ethical framework for evaluating free skin cancer screening events Moral theory

Relevant question

Utilitarianism

Do skin cancer screening events reduce mortality from skin cancer?

Justice

Do skin cancer screening events provide access to care for underserved populations?

Caring

Do skin cancer screening events cultivate relationships between the public and dermatologists?

Adapted from [13]

ing events should promote relationship building between dermatologists and the public.

 tilitarian Perspectives on Free Skin U Cancer Screenings Advocates for SPOTme® suggest that the program improves public health, an aggregate outcome that is central to utilitarian moral theory in healthcare [11]. The basis for this claim rests on the volume of suspected skin cancers, particularly melanomas, detected at screenings. Proponents of SPOTme® further emphasize that many of those screened would not have otherwise sought medical attention for these suspicious lesions [10]. To make a strong claim that screenings improve public health, however, supporters of SPOTme® must show that quantifiable health outcomes, particularly death from skin cancer, are improved by these events. Unfortunately, limited follow-up data are available from screenings. In one study, screenees with lesions suspicious for melanoma were later contacted by investigators to determine results of subsequent skin biopsies of those lesions [14]. Over the study period, 1992 to 1994, 371 biopsysupported melanomas were detected among 4458 screenees with suspicious pigmented lesions out of a total 242,374 people screened. The authors calculated a positive predictive value of 17% for screenings. Further, there were a lower proportion of screenees with thick melanomas (defined as Breslow thickness > 1.5 mm) than that reported in the 1990 Surveillance, Epidemiology and End Result Registry (SEER). A later publication by the AAD concluded that, since primary melanoma thickness is a predictor of survival and since many screenees would not have sought evaluation were it not for the free screenings, SPOTme® does, in fact, save lives [15]. Counterarguments to the utility of screenings rebut the claim that SPOTme® saves lives by emphasizing that surrogate measures of mortality, like Breslow thickness, are not equivalent to mortality itself [13]. Indeed, SPOTme® does not routinely collect outcome data on screenees. Ultimately, making a strong claim about improving outcomes falls short if there is no mechanism for assessing those outcomes.

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J ustice Perspectives about Free Skin Cancer Screenings

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Even with lingering uncertainty about the utility of free skin cancer screenings, the practice may be ethically justifiable using justice arguments related to enhanced access to care for underserved populations. Indeed, there is no shortage of studies demonstrating limited access to dermatology services using traditional metrics like Medicaid participation by dermatologic providers and wait-times for new dermatology appointments [16, 17]. Proponents of free skin cancer screenings have claimed that these events provide access to care for people who lack adequate health insurance and/or who have urgent dermatologic problems [10, 18]. However, to make a strong justice argument in support of skin cancer screenings, advocates must demonstrate that people who show up to be screened derive from traditionally underserved populations and that the access gained through screenings is sufficient to meaningfully impact disease. Demographic data from 30 years of SPOTme® events reveal that most screenees are well-educated, over 50  years old, and Caucasian [10]. Further, over 90% have health insurance at the time of the event [10]. These demographics are not consistent with populations traditionally undeserved in the American healthcare system. SPOTme® has responded by rolling out targeted screening campaigns, such as one involving outdoor Latinx workers through Mexican consulates in the US [19]. One-time access to a dermatologist at a screening may not be sufficient to diagnose and manage complex skin cancers, like melanoma, which often require extensive excisions, interdisciplinary consultation, and long-term follow-up. Screenees with suspected or confirmed melanoma are the most likely of all those presenting for screening to lack health insurance, a trend that is increasing over time [10, 20]. For screenees with suspected skin cancer who lack health insurance, the AAD recommends seeking care at a free medical clinic or requesting discounted care from a dermatology practice [21]. Unfortunately, sur-

vey data from free medical clinics show that only about 16% offer on-site dermatology services and, of those, only 59% provide excisions [22].

 kin Cancer Screenings S as Expressions of Caring Although utilitarian and justice-based assessments are mixed, free skin cancer screenings may still garner support as expressions of caring by cultivating relationships between dermatologists and individuals or communities. This argument is central to ongoing support for other kinds of health screening, including annual physical examinations by primary care providers, which have also come under scrutiny [23]. According to this reasoning, screenings provide opportunities for dermatologists to cultivate relationships through trust, education, value elicitation, compassion and touch. The physician-patient relationship is thoroughly explored in the Code of Ethics from the American Medical Association (AMA). In the context of such a relationship, the patient has rights to, among other things, continuity of care and accountability from the healthcare provider [24]. Unfortunately, the nature of free cancer screenings restricts the development of formal relationships between healthcare providers and individuals. For example, prospective SPOTme® screenees must sign a waiver releasing volunteer screeners from any responsibility in connection with the screening [25]. Further, federal regulations prohibit the provision of free medical services in exchange for referrals of any person with public health insurance, such as Medicare or Medicaid [25]. Essentially, the regulatory environment surrounding free cancer screenings effectively prohibits establishing caring relationships between individuals and healthcare providers.

Public Relations for Dermatologists The founders of SPOTme® acknowledge that a major beneficiary of free screening events are dermatologists themselves [26]. The program ostensibly boosts the reputation of dermatologists by associating them more firmly

295 The Ethics of Skin Cancer Screening

with cancer and volunteerism. Overall, the program has a legitimizing effect both within the broader medical community and the pub-

lic, countering perceptions that dermatologists are overly focused on cosmetics and reluctant to accept referrals [27, 28].

Case Scenario

Dr. Goodintentions is considering volunteering as a screener at a free skin cancer screening event in her community. She should: A. Take part in order to reduce death from skin cancer. B. Join in to provide care to underserved populations. C. Volunteer so as to establish relationships with individuals in her community. D. Use the event to educate the public about skin cancer. E. Participate in order to improve the reputation of dermatologists. F. Refuse to participate. Analysis of Case Scenario Outcome data from free skin cancer screenings are limited to a few years of follow-up from the early ‘90s showing that melanomas discovered at these events were generally thinner than those reported to SEER [14]. There are no data available regarding the effect of screening events on skin cancer mortality and no routine mechanisms for collecting such data, which argues against choice A. Historically, the vast majority of screenees have not derived from medically underserved populations, countering choice B [10, 20]. Recently, however, the AAD has begun

 requent Skin Cancer Screening F Examinations at the Request of Low-Risk Patients (“The Worried Well”) This chapter will close with a brief analysis of a familiar refrain for dermatologists in the US: requests for frequent TBSEs by relatively lowrisk patients, such as those with only a few nevi or rare actinic keratoses. Recall that the USPSTF has concluded that there is insufficient evidence to make a recommendation

targeted screenings of populations with traditionally limited access to healthcare [19]. Regulations surrounding provision of free medical services severely limit the potential for volunteer dermatologists to form relationships with individuals, as outlined by the AMA Code of Ethics, undermining choice C [24, 25]. Advocates for SPOTme® highlight the benefit of the program for the perception of dermatologists as cancer doctors among the medical community and general public, as in choice E [26]. Although important, improving dermatologists’ reputation should not be the central motivation for a campaign that claims to benefit public health, first and foremost [11]. Given all of the restrictions and uncertainties associated with free skin cancer screenings, shifting the focus of these events from a health encounter to an educational experience, choice D, may be the most ethically appropriate course of action. Even in this case, utilitarianism mandates that learning outcomes be measured. Declining to participate may be tempting in this case. However, volunteering is an important moral norm in medicine. Indeed, the AAD Code of Medical Ethics encourages dermatologists to spend some of their professional time volunteering and making efforts to reduce health disparities [29].

about skin cancer screening in asymptomatic adults [7]. In the common experience, these requests are based upon strong preferences of the patient, who is often anxious about the development of skin cancer and comforted by frequent examinations by a dermatologist [30]. Although there are concerns that skin cancer screening exams may actually promote anxiety, recent data do not support this claim [31]. The ethical analysis in this case focuses on autonomy, particularly how autonomy may be constrained by fair distribution of limited healthcare resources and other factors.

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 utonomy Perspectives on Requests A for Frequent TBSEs by Low-Risk Patients Autonomy in clinical medicine manifests as self-determination by capable patients [32]. Accordingly, respect for autonomy supports patient preferences for frequent TBSEs [30]. However, even in Western cultures, in which individual liberty is highly valued, there are important limits on autonomy (. Table 29.3). As such, the autonomous preference of a patient for frequent TBSEs may be limited if the patient has an irrational belief about the development of skin cancer or the dermatologist judges frequent follow-ups to have no medical benefit over less frequent follow-ups.  

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..      Table 29.3  Limitations on patient autonomy in healthcare Rationale for limitation

Example

Public safety

A patient with active Ebola virus infection is isolated in a specialized hospital ward against his will.

Limited resources

A patient in a free dermatology clinic is denied botulinum toxin for axillary hyperhidrosis because it is not available despite his strong desire for it.

Irrational beliefs

Unable to act autonomously

Medically non-beneficial intervention

Adapted from [32]

A patient requests a large scalp excision for “parasites” but is denied by a dermatologic surgeon because there is no objective evidence of infestation. An adolescent patient’s request for dermal filler for cosmetic enhancement is refused because her parent does not agree to the procedure. A medical dermatologist refuses oral isotretinoin for a patient requesting it for imperceptibly mild acne.

The dermatologist should inquire about the nature of the patient’s anxiety regarding the development of skin cancer. If there is an underlying, irrational belief, appropriate counseling may correct it. The dermatologist should also be frank about her judgment of the limited benefit of frequent screening to the patient. In a related but materially different scenario, high-risk patients desiring TBSEs should not be denied them based upon production pressures on dermatologists [33].

 istributive Justice Perspectives D on Requests for Frequent TBSEs by Low-Risk Patients As noted in . Table  29.3, limited healthcare resources represent another rationale for restricting patient autonomy. The role of distributive justice in resisting requests for frequent TBSEs in low-risk patients has been explored previously [30]. According to this argument, giving priority to a low-risk patient with strong preferences for frequent TBSEs would limit access of other patients with urgent dermatologic needs and add cost to the system. This opens discussion about which patients should receive priority in the setting of scarce appointment slots and dermatologist time. Several strategies for distribution of limited healthcare resources exist, none of which considers patient preferences (. Table  29.4).  

 

..      Table 29.4  Strategies for distributing limited healthcare resources Allocation strategy

Example

Treating potential recipients equally

First-come, first served; random selection

Prioritizing the worst off

Sickest or youngest first

Maximizing health utility

Priority to those who would benefit most

Upholding social value

Valued members of society, such as healthcare providers or government officials, get priority

Adapted from [34]

297 The Ethics of Skin Cancer Screening

Each scheme has pros and cons. The optimal method of allocation depends on the context

and often incorporates elements of several approaches [34].

Case Scenario

Dr. Screen is evaluating a young adult patient with scattered, benign-appearing nevi and few risk factors for skin cancer. The patient has a friend with metastatic melanoma and is very anxious about developing melanoma himself. He requests TBSEs every 3 months. Dr. Screen should: A. Agree to the request ­indefinitely. B. Decline the request outright. C. Refer to another provider. D. Agree to the request for 1–2 visits on the condition that, if no concerning lesions are discovered, visits become less frequent in the future. Analysis of Case Scenario Acquiescing indefinitely to the desire for frequent TBSEs in this low-risk, anxious patient,

References 1. Morabia A, Zhang FF. History of medical screening: from concepts to action. Postgrad Med J. 2004;80:463–9. 2. Reiser SJ. The emergence of the concept of screening for disease. Milbank Mem Fund Q Health Soc. 1978;56:403–25. 3. Wilson JMG, Jungner G. Principles and practice of screening for disease. Public Health Papers, no 34. Geneva: World Health Organization; 1968. p. 164. 4. Gardner LJ, Strunck JL, Wu YP, Grossman D. Current controversies in early-stage melanoma: questions on incidence, screening, and histologic regression. J Am Acad Dermatol. 2019;80:1–12. 5. Adami H-O, Kalager M, Valdimarsdottir U, Bretthauer M, Ioannidis JPA. Time to abandon early detection cancer screening. Eur J Clin Investig. 2019;49:e13062. 6. Johnson MM, Leachman SA, Aspinwall LG, Cranmer LD, Curiel-Lewandrowski C, Sondak VK, et  al. Skin cancer screening: recommendations for data-driven screening guidelines and a review of the US Preventive Services Task Force controversy. Melanoma Manag. 2017;4:13–37. 7. Bibbins-Domingo K, Grossman DC, Curry SJ, Davidson KW, Ebell M, Epling JW Jr. Screening for skin cancer: US preventive services task force recommendation statement. JAMA. 2016;316:429–35.

choice A, may uphold the patient’s autonomy. However, there are valid reasons for overriding patient autonomy, including irrational beliefs on the part of the patient, requested interventions that are not medically beneficial, and just allocation of limited healthcare resources [32]. Declining the patient request for frequent TBSEs outright or referring to another provider  – choices B and C, respectively – may seem appealing but do little to build trust, rapport and continuity between the dermatologist and patient [30]. A reasonable compromise for situations in which patient preferences do not align with healthcare provider recommendations is a timelimited trial of the intervention preferred by the patient [12]. After a trial of mutually agreeable duration, the management plan then shifts to better conform to provider recommendations.

8. Tsao H, Weinstock MA.  Visual inspection and the US preventive services task force recommendation on skin cancer screening. JAMA. 2016;316:398–400. 9. Nahar VK, Mayer JE, Grant-Kels JM. The case for skin cancer screening with total-body skin examinations. JAMA Oncol. 2016;2:999–1001. 10. Okhovat J-P, Beaulieu D, Tsao H, Halpern AC, Michaud D, Shaykevich S, et al. The first 30 years of the American Academy of Dermatology skin cancer screening program: 1985-2014. J Am Acad Dermatol. 2018;79:884–91.e3. 11. Torres A, Tsao H. Commentary: American Academy of Dermatology free skin cancer screening: 30 years of value. J Am Acad Dermatol. 2017;76:181–2. 12. Vaughn L.  Bioethics: principles, issues, and cases. 2nd ed. New York: Oxford University Press; 2013. p. xiii; 753 p. 13. Stoff BK, Grant-Kels JM. Valuable or vain: an ethical analysis of free skin cancer screening. J Am Acad Dermatol. 2017;76:177–80. 14. Koh HK, Norton LA, Geller AC, Sun T, Rigel DS, Miller DR. Evaluation of the American Academy of Dermatology’s National Skin Cancer Early Detection and Screening Program. J Am Acad Dermatol. 1996;34:71–8. 15. Nelson R. Skin cancer screenings work. Dermatology World, 2011. Available at https://www.­aad.­org/dw/ monthly/2011/august/skin-cancer-screenings-work. Accessed 24 May 2020.

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16. Tsang MW, Resneck JS Jr. Even patients with changing moles face long dermatology appointment waittimes: a study of simulated patient calls to dermatologists. J Am Acad Dermatol. 2006;55:54–8. 17. Decker SL.  Two-thirds of primary care physicians accepted new Medicaid patients in 2011-12: a baseline to measure future acceptance rates. Health Aff (Millwood). 2013;32:1183–7. 18. Boulos S, Fiala K, Butler DF.  Free skin ­ cancer screening provides access to care. J Am Acad Dermatol. 2012;67:787–8. 19. SPOTme® with the Latino community. [cited 16 May 2019]. Available from: https://www.­aad.­org/public/ spot-skin-cancer/programs/screenings/in-the-community/latino-outreach. 20. Geller AC, Zhang Z, Sober AJ, Halpern AC, Weinstocjk MA, Daniels S, et al. The first 15 years of the American Academy of Dermatology skin cancer screening programs: 1985-1999. J Am Acad Dermatol. 2003;48:34–41. 21. No health insurance? How to follow up after a skin cancer screening. [cited 16 May 2019]. Available from: https://www.­aad.­org/public/spot-skin-cancer/ programs/screenings/medical-care-without-healthinsurance. 22. Madray V, Ginjupalli S, Hashmi O, Sams RW, Johnson JA, Stoff BK.  Access to dermatology services at Free Medical Clinics, a nationwide cross-­ sectional survey. J Am Acad Dermatol. 2019;81:245–6. 23. Goroll AH.  Toward trusting therapeutic relation ships--in favor of the annual physical. N Engl J Med. 2015;373:1487–9. 24. Code of Medical Ethics Opinion 1.1.3  - Patient Rights. [cited 16 May 2019]. Available from: https:// www.­a ma-assn.­o rg/delivering-care/ethics/patientrights.

25. SPOTme® Skin Cancer Screening Program. [cited 16 May 2019]. Available from: https://www.­aad.­org/ members/volunteer/skin-cancer-screening-program. 26. Find a free SPOTme® Skin Cancer Screening. [cited 16 May 2019]. Available from: https://www.­aad.­org/ public/spot-skin-cancer/programs/screenings/find-ascreening. 27. Brezinski EA, Harskamp CT, Ledo L, Armstrong AW.  Public perception of dermatologists and comparison with other medical specialties: results from a national survey. J Am Acad Dermatol. 2014;71: 875–81. 28. Bowers J.  A matter of perception. Dermatology World, 2013. Available at https://www.­aad.­org/dw/ monthly/2013/october/a-matter-of-perception. Accessed 24 May 2020. 29. AAD Code of Medical Ethics for Dermatologists. [cited 16 May 2019]. Available from: https://www.­ aad.­o rg/For ms/Policies/Uploads/AR/AR%20 Code%20of%20Medical%20Ethics%20for%20 Dermatologists.­pdf. 30. Milam P, Korman A, Kaffenberger J. Frequent skin examinations in patients with actinic keratoses: ethical, financial, and moral implications. J Am Acad Dermatol. 2017;77:985–7. 31. Risica PM, et al. Psychosocial consequences of skin cancer screening. Prev Med Rep. 2018;10:310–6. 32. Beauchamp TL, Childress JF. Principles of biomedical ethics. 6th ed. New  York: Oxford University Press; 2009. p. xiii, 417 p 33. Grant-Kels JM, Stoff BK.  Total body skin exams (TBSEs): saving lives or wasting time? J Am Acad Dermatol. 2017;76:183–5. 34. Persad G, Wertheimer A, Emanuel EJ. Principles for allocation of scarce medical interventions. Lancet. 2009;373(9661):423–31.

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Businessperson Table of Contents Chapter 30 Ethical Issues Surrounding Private-Equity Involvement in Dermatology – 301 Chapter 31 From Behind the Microscope: Ethical Considerations in Modern Day Dermatopathology – 317 Chapter 32 Physician Advertising and Self Promotion – 333 Chapter 33 Dermatoethics: The Ethics of Concierge Medicine – 341 Chapter 34 Medication Discount Programs – 349

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Ethical Issues Surrounding Private-Equity Involvement in Dermatology Madeline E. DeWane, Clifford S. Perlis, and Jane M. Grant-Kels Contents  thical Issues Surrounding Private Equity Involvement in  E Dermatology – 302 Corporatization and Private Equity in Dermatology – 302 The Competing Goals of PE and Medicine – 303 Conflict of Interest and Competing Ethical Frameworks – 304 What Makes the PE-Owned Practice Setting Unique – 304  hich Ethical Framework W Is Correct? – 305 PE Impact on Quality of Care – 306 PE Impact on Access to Care – 307 PE Impact on Physician Wellbeing – 307 PE Impact on Physician Autonomy – 308 Potential Long-Term Consequences of PE – 308  ealthcare Costs – 308 H Education, Training and Research – 309 Sustainability – 310

Conclusions – 312 References – 312

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_30

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nnLearning Objectives 1. To understand the scope and significance of private equity investment in dermatology. 2. To examine the arguments for and against private equity investment in dermatology through multiple ethical frameworks. 3. To learn how to approach real-world issues involving private equity in an ethical manner.

>>Points of Emphasis

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55 Potential benefits of private-equity investment in dermatology practices include increased efficiency, decreased administrative burden for dermatologists, and resources to fuel practice growth. 55 Ethical concerns about private-equity investment in dermatology practices include profits being prioritized over patients, overutilization of services, increased cost, and diminished quality of care.

 thical Issues Surrounding Private E Equity Involvement in Dermatology As early as 1890, the American Medical Association (AMA) denounced corporate influence in medicine, arguing that it “brought an excessive ‘spirit of trade’ into the profession.” [1] In 1912, the Corporate Practice of Medicine (CPOM) doctrine, which “prohibits corporations from practicing medicine or employing a physician to provide professional medical services,” [2] was incorporated into the AMA’s Principles of Medical Ethics for the first time [1]. The CPOM doctrine aimed to address concerns regarding the commercialization of medicine, the potential conflicts between a corporation’s obligation to shareholders and a physician’s obligations to his or her patients, and the possibility that a corporation could interfere with a physician’s independent medical judgment [2]. It also sought to protect the “preeminence” of doctors and maintain physicians’ monopoly on the medical profession [1].

Since the CPOM doctrine was introduced, many states have adopted CPOM regulations, [3] but there is no federal law prohibiting corporate involvement in medicine. Some prohibitions at the state level are codified in statutes or regulations, while others have developed from prior court decisions or state Attorneys General Opinions [4]. Enforcement is variable, exceptions are common, and legal loopholes have spurred continued concerns about corporatization in medicine today [5–7].

 orporatization and Private Equity C in Dermatology In dermatology, concerns about corporatization in medicine have most recently been embodied in the controversy surrounding private-equity (PE) investment in dermatology practices. Private equity is composed of pooled money from institutional or accredited investors (individuals with net worth of over $1 million or meeting minimum annual income requirements) that is used to either buy out public companies or invest in private companies [8–10]. Private-equity holdings are not listed on a public exchange and in some cases are exempt from registering with the U.S.  Securities and Exchange Commission (SEC), limiting both their oversight and disclosure requirements [11]. The field of dermatology is particularly attractive to PE investors because of a high demand for services, a relative shortage of dermatologists, a fragmented market with many small, separately owned offices, and favorable insurance reimbursement [12]. As a result, PE investment in dermatology has grown steadily over the past several years. Physicians First Healthcare Partners (a “boutique” investment bank specializing in the healthcare sector) estimates that annual dermatology-related PE transactions increased from only 20 in 2015 to 85 in 2018 [13]. In many states, the legal barriers to PE investment in dermatology practices are minimal. When CPOM prohibitions do exist, they usually bar corporations from employing physicians to provide medical services [7]. According to Pepper Hamilton LLP, PE firms typically work around CPOM prohibitions by using a

303 Ethical Issues Surrounding Private-Equity Involvement in Dermatology

“management services entity” to acquire a practice’s unregulated assets (for example, real estate, equipment, and unlicensed staff) without directly employing any of the licensed healthcare professionals in the practice. The management services entity then provides the practice with all of the nonclinical services required to run the business (such as billing, record keeping, and financial planning), while the physicians practice independently. Under this arrangement, the physicians are “solely responsible for all clinical decisions and control all clinical functions…while providing the management entity with maximum permissible control over the practice and revenue therefrom.” [14] Some dermatologists (and physicians in other fields) have expressed concern over the ethics of PE involvement in healthcare and the potential long-term sequelae of these changing practice patterns [8, 15–17]. As physicians, we are granted many privileges, including “the power to set ethical standards, in return for maintaining competence, being trustworthy and ethical, and working to benefit patients and society.” [18] It is therefore our responsibility to examine the ethics of PE investment in dermatology and how this phenomenon is changing the field.

 he Competing Goals of PE T and Medicine At the heart of the debate over PE investment in dermatology is the fundamental conflict between the primary goal of PE investment (adding value) and the primary goal of dermatologists (caring for patients). When PE firms invest in a dermatology practice, their motivation is financial; they plan to invest in a practice and then re-sell (or “flip” the practice) in 3–7  years. This strategy is central to PE’s success [20]. Adding debt, minimizing taxes, cutting costs, and growing the practice’s geographical footprint are all strategies used by PE firms to maximize earnings before interest, tax, depreciation, and amortization (EBITDA) [15, 19, 20]. Internal PE publications discussing investment in dermatology focus on the opportunities for adding value and increasing profit margins [19, 21]. Once a

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predetermined rate of return for investors is reached (referred to as the “hurdle rate”), PE firms are eligible to receive 20% of the revenue generated when an investment or property is sold (capital gains). This is referred to as “carried interest” and is the primary source of profit for these firms [22, 23]. Although individual PE transactions and fee structures may vary, in general, a PE firm’s revenue goes first to its investors and second to the firm itself (ie, the investment managers), removing substantial capital from the healthcare system [8, 15, 24]. Although dermatologists also need to generate revenue, their primary goal is to care for patients. The relationship between physician and patient is often described as fiduciary, meaning “a relationship in which one party places special trust, confidence, and reliance in and is influenced by another who has a… duty to act for the benefit of the party.” [25] Because of the imbalance of power and knowledge inherent in the physician-patient relationship, physicians are expected to act “solely and entirely” in the patient’s best interest, with competing interests (including self-­ interest) a secondary consideration [26]. This sentiment is embodied in the Hippocratic Oath, as well as the AMA’s Principles of Medical Ethics which states, “The primary objective of the medical profession is to render service to humanity; reward or financial gain is a subordinate consideration. Under no circumstances may physicians place their own financial interests above the welfare of their patients. Where the economic interests of the hospital, health care organization, or other entity are in conflict with patient welfare, patient welfare takes priority.” [27] It is also reflected in the American Academy of Dermatology (AAD)‘s Ethics Pledge, the first line of which is, “In acting as a dermatologist, I will strive to put my patients’ welfare above all other interests.” [28] >>Point of Emphasis 55 The relationship between physicians and their patients is fiduciary; patients place special trust in their physicians, and in return, physicians are expected to act in the best interests of their patients.

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 onflict of Interest and Competing C Ethical Frameworks

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Those critical of PE investment in medical practices worry that it creates a conflict of interest (COI) when both the PE firm and the physicians in a PE-backed practice benefit financially from providing patient care. However, the potential for financial COI is not unique to PE-backed practices. Physicians benefit monetarily from caring for their patients across all practice settings, especially when they act as both professionals and business owners in private practice [29]. Prioritization of self-interest over patient care can occur in any environment, especially when compensation is directly linked to productivity (for example, the fee-for-service model of reimbursement). In studying issues of COI in medicine, two models  – the Performance Model and the Trustworthiness Model – are often employed, [30] and these models correspond to distinct, and in some ways competing, ethical frameworks (. Table  30.1). In the Performance Model, COI can only be established when it has been demonstrated that a particular interest is undermining a physician’s judgement such that outcomes are adversely affected. This consequentialist or utilitarian approach requires empirical evidence and focuses on results [30]. Is care equivalent across practice models? Is physician satisfaction increased? Are healthcare costs lower because of improved efficiency? This approach argues that if outcomes for physicians, patients, and society are positive, the model of care is ethically justifiable.  

In contrast, the Trustworthiness Model focuses on the fiduciary nature of the physician patient relationship and the fact that doctors have a duty to develop and maintain patient trust. A COI in this model would be any issue that could undermine a patient’s trust in his or her doctor regardless of outcomes [30]. Responses to PE involvement in dermatology practices may vary according to which COI model is employed.

 hat Makes the PE-Owned Practice W Setting Unique Those who accept PE investment as ethically justifiable point out that profitable care may be consistent with high quality care and that COI issues can arise across a variety of settings. What then makes a PE-backed practice unique from an ethical standpoint? First, as discussed previously, PE investment is motivated by revenue generation, while a physician’s primary obligation is to patient welfare. When profit and patient care conflict, a PE firm’s ultimate obligation remains to its investors, while a physician practice owner still has a primary duty to his or her patients, even if it comes at a financial disadvantage. Second, the PE investment structure involves non-medical investors benefitting financially from the delivery of health care, an emerging model that is likely to be unfamiliar to patients. Although other ownership models (such as private practice) are not routinely made known to patients, PE investment raises the question of whether this COI should be disclosed to patients. According to

..      Table 30.1  Competing models for evaluating COI in medicine Performance model

Trustworthiness model

COI established with empiric proof that a secondary interest is undermining a physician’s judgement Requires evidence of negative outcomes Represents a consequentialist/utilitarian approach

COI is any issue that could undermine a patient’s trust in his or her doctor Independent of outcomes Represents a deontological/duty-based approach

305 Ethical Issues Surrounding Private-Equity Involvement in Dermatology

the Trustworthiness Model of COI discussed above, non-disclosure could be perceived as a violation of patient autonomy. According to the AMA, “Respect for patients’ autonomy is a cornerstone of medical ethics… physicians have an obligation to inform patients about… payment models, financial incentives, and formularies, guidelines, or other tools that influence treatment recommendations and care.” [27] The growing importance of transparency in healthcare delivery is reflected in the Physician Payment Sunshine Act of 2010, disclosure requirements for hospital-based clinics, and policies mandating COI disclosure for physicians consulting for pharmaceutical companies [31–33]. Transparency is an important component of the ethical practice of medicine and is directly addressed as a physician responsibility in the AMA’s Principles of Medical Ethics [27]. Finally, PE investment is intended to be short-term, with the business strategy centered on re-sale of the practice in a matter of a few years. The Harvard Business Review notes, “the fundamental reason behind private equity’s growth and high rates of return is something that has received little attention, perhaps because it’s so obvious: the firms’ standard practice of buying businesses and then, after steering them through a transition of rapid performance improvement, selling them.” [22] This outlook differs from that of an independent private practice owner who is personally invested in growing a sustainable practice long term.

 hich Ethical Framework W Is Correct? Whether PE involvement in dermatology is “right” or “wrong” hinges partly on which ethical framework for COI is employed. From a deontological stance, the physician’s duty to his or her patients is paramount, and certain “universalizable” rules (for example, corporations should not be involved in the practice of medicine) should guide our behavior. Medicine

has traditionally been grounded in this type of duty-based ethics [34]. A deontological model would conceptualize PE investment in a dermatology practice and the potential COI it creates as inherently unacceptable, regardless of whether or not physician behavior is influenced or patient care is impacted. Although COI may be mitigated by freely disclosing the PE relationship to patients, medicine’s long history of resistance to corporate influence in health care (dating back to the AMA’s original CPOM doctrine) still suggests that from a deontological perspective, PE investment may be so ethically problematic that prohibition is the most reasonable policy. If one takes a consequentialist, or utilitarian, view, however, outcomes matter more than any inherent rightness or wrongness of PE involvement in medicine (ie, if patients remain well cared for, PE involvement is not unethical). Similarly, if a COI does not influence physician behavior or compromise patient trust, it is ethically acceptable. The utility of this approach with respect to PE is somewhat limited by the lack of published data on PE transactions and their long-term impacts on physicians, patients, and the healthcare system as a whole. This dearth of data is exacerbated by the widespread use of nondisclosure agreements in PE business deals and the resistance of PE firms to academic analysis that is critical of PE involvement in healthcare [15, 35]. A consequentialist approach is also made more difficult to evaluate when multiple outcomes need to be considered; what parameter is ultimately the best measure of PE investment’s harm or benefit? It may be that the best approach incorporates aspects of both of these models. PE investment in dermatology is a relatively new phenomenon, and data on its effects  – especially long term – are limited. However, as PE presence in dermatology continues to grow, it is prudent to explore how PE might affect quality of and access to care, physician wellbeing, education and research, and the healthcare system as a whole.

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PE Impact on Quality of Care

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patient in 2015. As of 2018, there were 30 PE-­ backed dermatology practices out of at least Dermatologists have a fundamental responsi- 7000 dermatology practices nationwide bility do what is best for their patients (benefi- (0.43%), but the PE-backed practices made up cence), but at this point there is little data on 25% (5/25) of the top 25 outliers in skin biopwhether PE investment might affect quality of sies per Medicare patient [8, 36]. Exceedingly care in dermatology. Proponents argue that PE high rates (between 5 and 20 standard deviainvestment  – which involves ceding the non- tions above the mean) of intralesional injecclinical functions of a dermatology office to a tions and cryosurgery performed by management services entity  – increases effi- PE-employed non-physician clinicians have ciency through centralized billing, contracting, also been reported [8]. Some of these examordering, and consolidation of smaller prac- ples may be anomalies, but they do raise the tices. By allowing physicians to spend more question of whether the quality of care protime and attention on patients, PE involvement vided at some PE-backed practices might be in dermatology practices could potentially made secondary to the goal of generating revimprove both practice profits as well as patient enue. PE investment’s effects on healthcare qualsatisfaction and outcomes. Additionally, larger ity in other fields appears to be mixed. A 2008 group practices have access to resources that analysis of PE investment in nursing homes can help navigate increasing administrative found that, although nurse staffing ratios burdens and ­negotiate better contracts with decreased after PE business deals, there was insurers. Other potential benefits to patients no significant decline in quality measures [37]. include more uniform application of clinical However, there are also notable examples of practice guidelines (and therefore more evihealthcare facilities failing after PE investdence-based care), improved compliance with ment. ManorCare, the nation’s second largest national regulations, and more resources to nursing home chain that at one time provided support remote or extended access to care care for over 25,000 patients across the US, (such as teledermatology or non-traditional was purchased by The Carlyle Group in 2007 office hours). for $6.1 billion. In 2011, ManorCare began to Critics of PE argue that patient care might struggle financially; quality of care was suffer due to the investment industry’s focus on revenue [8, 15]. PE firm publications adver- reported to suffer, and, between 2013 and tise a variety of strategies to maximize profit 2017, health code violations increased 26%, a in dermatology, including mandated internal rate three times faster than other US nursing referrals for surgical procedures, dermatopa- home groups. ManorCare ultimately filed for thology, and laboratory services; product bankruptcy in 2018 [38, 39]. In other areas of sales; and a focus on cosmetic dermatology medicine, studies have found that patients at [19, 20]. Of course, these strategies are not for-profit (although not specifically PE-­ unique to PE-backed practices, and even in backed) facilities, including dialysis centers, the setting of PE investment, physicians are rehabilitation centers, and hospitals, have ideally free to exercise their independent med- worse outcomes, [40–42] prompting multiple specialties to express concern about how PE ical judgement. Some data, however, suggest that PE-­ involvement in medicine might affect quality backed practices push personnel to do more of care, [16, 17]. Another criticism of PE investment in derprocedures than are typically performed. In a matology is the use of non-physician clinicians, recent analysis of Medicare Part B physician such as nurse practitioners (NPs) and physician payment data, it was found that PE-backed assistants (PAs), at satellite offices with inadepractices were overrepresented among outliquate levels of supervision. Although this pracers (at least 7 standard deviations above the tice is not unique to PE-­ backed offices, mean) in skin biopsy rates, performing leveraging non-physician providers to the maxbetween 4.0 and 10.3 mean biopsies per

307 Ethical Issues Surrounding Private-Equity Involvement in Dermatology

imum allowed by state law is openly advertised by PE firms as a strategy to increase profit [8, 19]. In some PE-backed practices, over 50% of the practice staff are NPs or PAs [43]. According to the AAD, the best care is delivered when non-dermatologist providers have direct, on-site supervision and new patients are first seen by a dermatologist rather than a nonphysician clinician [44]. Multiple studies have shown that non-­ physician clinicians have a higher number needed to biopsy (NNB) to find skin cancer compared to dermatologists [45, 46]. In a 2018 medical record review of 20,270 patients, the NNB to diagnose one skin cancer was 3.9 for PAs and 3.3 for dermatologists (p  Points of Emphasis 55 Rendering optimal medical services to patients is the primary goal of every physician 55 When dermatologists consider whether or not to interpret skin biopsy slides from their own patients, they should first consider the quality of their pathology service compared to that of the other options available, making optimal

commercial labs and EMR companies may also indirectly introduce additional financial burdens on HIT users who choose to seek pathology services from non-contracted dermatopathology labs. One such example may include an EMR company charging dermatology practices higher rates for the capability to download pathology reports from a dermatopathology lab with which the company does not have a standing agreement. This imposes additional pressures on dermatologists to utilize a particular dermatopathology lab primarily from a desire to reduce overhead rather than provide optimal pathology services. Additionally, these same EMR companies charge the labs to which they are not affiliated excess fees to download the reports to their referring physician’s EMR thereby raising their costs with the hopeful intention of reducing competition. When considering the most appropriate course of action in such a scenario, dermatologists should follow a fundamental rule: if an option does not have sound ethical arguments to support it, it should not be pursued. The dermatologist’s primary responsibility is to assure optimal medical care for her patient. While it is possible that the commercial corporatized dermatopathology lab is dedicated to administering quality patient care, fundamentally, the primary responsibility of the lab as an organization is to its shareholders. The AAD supports incentives that promote the voluntary adoption of affordable and reliable HIT solutions in dermatology but these should not be achieved at the risk of reducing quality of care to our patients.

patient care and non-­ maleficence the foremost priority. 55 When trying to decide whether or not to include treatment recommendations in the pathology report, dermatopathologists should decide on a case-bycase basis, preferentially choosing a reporting style and communication strategies that help guide appropriate clinical decisions regarding the patient’s

329 From Behind the Microscope: Ethical Considerations in Modern Day Dermatopathology

topathologist of their choice. However, if they are constrained to send to a specific lab, dermatologists whenever possible should still strive to have a strong working relationship with the dermatopathologists interpreting their patients’ specimens that optimizes clinical pathologic correlation. 55 When deciding where to send their patients’ pathology specimens, dermatologists should make choices that optimize patient care and are freed from influences from electronic medical record companies as well as commercial dermatopathology laboratories or insurance plans.

diagnosis, treatment, and prognosis; additionally the dermatopathologist should consider the preferences regarding report style and expertise of the referring clinician. 55 It is essential for dermatopathologists, when called upon to testify, to behave with integrity and honesty. 55 Insurance company-driven mandated dermatopathology lab referrals can occasionally limit dermatologists’ choice about where to send their pathology specimens. In the interest of quality patient care, beneficence and non-maleficence, dermatologists ideally should be allowed to send specimens to the derma-

Conclusion The practice of dermatopathology presents challenging ethical scenarios for both the dermatopathologist and dermatologist. Both clinicians and pathologists must be familiar with relevant ethical guidelines so as to facilitate appropriate care and avoid maleficence. The corporatization of dermatopathology laboratories has enabled competition for skin specimens on a national level. Dermatologists must approach any potential pathology provider with scrutiny regarding their quality and nature of service provided, ethically and legally, and should be entitled to refer based on their best professional judgment of what is in the best interests of their patients. Acknowledgments  We would like to sincerely thank Dr. Homer O.  Wiland IV and Barry D. Kels, JD, MD for their contributions to the content of this chapter through Dermatoethics: Contemporary Ethics and Professionalism in Dermatology [29], particularly to cases 1–4 and . Table 31.1.

2.

3.

4.

5.

6.

7.

8.

9.

 

References 10. 1. Schaffer AC, Jena AB, Seabury SA, Singh H, Chalasani V, Kachalia A.  Rates and characteristics of paid malpractice claims among US physicians by specialty, 1992–2014. JAMA Intern Med. 2017;177(5):710–8.

Ackerman AB. Dermatologist ≠ dermatopathologist: no place in a profession for pretenders. J Am Acad Dermatol. 2005;53(4):698–9. Grant-Kels JM. The whys and wherefores of who reads dermatopathology slides. J Am Acad Dermatol. 2005;53(4):703–4. Singh S, Grummer SE, Hancox JG, Sangueza OP, Feldman SR.  The extent of dermatopathology education: a comparison of pathology and dermatology. J Am Acad Dermatol. 2005;53(4):694–7. Trotter MJ, Bruecks AK.  Interpretation of skin biopsies by general pathologists: diagnostic discrepancy rate measured by blinded review. Arch Pathol Lab Med. 2003;127(11):1489–92. Waller JM, Zedek DC. How informative are dermatopathology requisition forms completed by dermatologists? A review of the clinical information provided for 100 consecutive melanocytic lesions. J Am Acad Dermatol. 2010;62(2):257–61. Moy R.  The reason that dermatologists should not send all their slides to dermatopathologists is a scope of practice argument, not an ethical argument. J Am Acad Dermatol. 2005;53(4):700. Chen LL, Jaimes N, Barker CA, Busam KJ, Marghoob AA.  Desmoplastic melanoma: a review. J Am Acad Dermatol. 2013;68(5):825–33. United States Health and Human Services Department Office of the Inspector General Office of Analysis and Inspections. Financial arrangements between physicians and health care businesses: report to congress. May 1989. p.  3. Available from: http://oig.­hhs.­gov/oei/reports/oai12-88-01410.­pdf. Accessed 3 July 2019. United States Government Accountability Office. GAO-13-445. Medicare self-referral of anatomic pathology services. US Government Accountability Office report to congressional requesters. June 2013. Available from: http://www.­gao.­gov/ assets/660/655442.­pdf. Accessed 15 Sept 2019.

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11. American Medical Association. Opinion 11.2.2. Conflicts of interest in patient care. In: AMA code of medical ethics. Chicago: American Medical Association; 2019. 12. American Academy of Dermatology. Position statement on pathology billing. 9 Aug 2014. Available from: http://www.server.aad.org/Forms/Policies/Uploads/PS/PS-Pathology%20Billing.pdf. Accessed 28 November 2020. 13. American Society of Dermatopathology. Conflicts of interest. In: American Society of Dermatopathology code of conduct for members. Oct 2015. p. 6. Available from: http://www.­asdp.­org/getmedia/ 83678cff-16db-404a-b44d-1ce052f8b1ab/Code-ofConduct-for-Mbrs_FINAL100815/. Accessed 3 July 2019. 14. Goldsmith JD, Siegal GP, Suster S, Wheeler TM, Brown RW. Reporting guidelines for clinical laboratory reports in surgical pathology. Arch Pathol Lab Med. 2008;132(10):1608–16. 15. Berlin L.  Malpractice issues in radiology: relying on the radiologist. Am J Radiol. 2002;179:43–6. 16. Lafortune M, Breton G, Baudouin JL. The radiological report: what is useful for the referring physician? Can Assoc Radiol J. 1988;39(2):140–3. 17. Titus K.  Clinicians talk shop  – here’s what they want. CAP Today. Sept 2003. Available from: http://www.­cap.­org/apps/cap.­portal?_nfpb=true&_ pageLabel=reference. Accessed 3 July 2019. 18. Lee KC, Peacock S, Weinstock MA, Zhao GA, Knezevich SR, Elder DE, et al. Variation among pathologists’ treatment suggestions for melanocytic lesions: a survey of pathologists. J Am Acad Dermatol. 2017;76(1):121–8. 19. Hiscox B, Hardin MR, Orengo IF, Rosen T, Mir M, Diwan AH. Recurrence of moderately dysplastic nevi with positive histologic margins. J Am Acad Dermatol. 2017;76(3):527–30. 20. Fleming NH, Egbert BM, Kim J, Swetter SM.  Reexamining the threshold for reexcision of histologically transected dysplastic nevi. JAMA Dermatol. 2016;152(12):1327–34. 21. Comfere NI, Chakraborty R, Peters MS. Margin comments in dermatopathology reports on dysplastic nevi influence re-excision rates. J Am Acad Dermatol. 2013;69(5):687–92. 22. Jinna S, Grant-Kels JM, Graff J.  The ethics of mole miners. J Am Acad Dermatol. 2016;75(5):1072–4. 23. Michaels BD, Del Rosso JQ, Momin SB. Avoiding the legal “blemish”. J Clin Aesthet Dermatol. 2009;2(12):35–43. 24. Kornmehl H, Singh S, Adler BL, Wolf AE, Bochner DA, Armstrong AW. Characteristics of medical liability claims against dermatologists from 1991 through 2015. JAMA Dermatol. 2018;154(2):160–6.

25. Read S, Hill HF. Dermatology’s malpractice experience: clinical settings for risk management. J Am Acad Dermatol. 2005;53(1):134–7. 26. Feld A, Carey W. Expert witness malfeasance: how should specialty societies respond? Am J Gastroenterol. 2005;100(5):991–5. 27. Finkel E.  Expert witness guidelines for the specialty of pathology. CAP Today. July 2006. Available from: http://www.­captodayonline.­com/ Archives/feature_stories/0706ExpertSide.­h tml. Accessed 3 July 2019. 28. American Medical Association. Opinion 9.7.1. Medical testimony. In: AMA code of medical ethics. Chicago: American Medical Association; 2019. 29. Wiland HO IV, Kels BD, Grant-Kels J.  Ethical adventures in 21st century dermatopathology. In: Bercovitch L, Perlis C, editors. Dermatoethics. 1st ed. London: Springer; 2012. p. 169–75. 30. Greenberg RD.  The American Academy of Dermatology Ethics Committee: how it works and what you need to know. Clin Dermatol. 2009;27(4):331–5. 31. Kass JS, Rose RV. Ethical challenges for the medical expert witness. AMA J Ethics. 2016;18(3):201–8. 32. American Academy of Dermatology. Position statement on expert witnesses. 21 May 2016. Available from: https://www.­aad.­org/forms/policies/ Uploads/PS/PS-Expert%20Witnesses.­pdf. Accessed 3 July 2019. 33. American Medical Association. Opinion 8.09. Laboratory services. In: AMA code of medical ethics. Chicago: American Medical Association; 1994. 34. LeBoit PE, Cockerell CJ. The effort to decapitate American dermatopathology through laboratory capitation: an urgent and dire warning to dermatologists and dermatopathologists. J Am Acad Dermatol. 1994;31(1):98–100. 35. Brodell RT. The effort to decapitate American dermatopathology. J Am Acad Dermatol. 1995;32(2, Part 1):299. 36. Grant-Kels JM, Kels BD. Dermatology lab referrals: cash cow or ethical trap? Virtual Mentor. 2006;8(8):499–502. 37. Penneys NS.  Quality assessment of skin biopsy specimens referred to anonymous consultants. Arch Dermatol. 1996;132(9):1053–6. 38. Olhoffer IH, Lazova R, Leffell DJ.  Histopathologic misdiagnoses and their clinical consequences. Arch Dermatol. 2002;138(10):1381–3. 39. Lehv MS. Medical product liability. In: Sanbar SS, Firestone MH, Fiscina S, LeBlang TR, Wecht CH, Zaremski MJ, editors. Legal medicine. 7th ed. Philadelphia: Mosby, Inc.; 2007. p. 399. 40. Mulherin v. Ingersoll-Rand Co., 628 P. 2d 1301, 1303–1304 (Utah 1981).

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41. Ratushny V, Allen HB. The effect of medical malpractice on dermatology and related specialties. J Med Sci Res. 2007;1:15–20. 42. Crowson AN.  Medicolegal aspects of neoplastic dermatology. Mod Pathol. 2006;19(2):S148. 43. Ethics talk: clinical and research ethics in pathology - an interview with Theonia Boyd. AMA J Ethics [Internet]. 2016 Aug 1 Available from: https://journalofethics.ama-assn.org/podcast/ethics-talk-clinical-and-research-ethics-pathologyinterview-theonia-boyd. Accessed 20 June 2019. 44. American Academy of Dermatology. Position statement on physician choice of consultant for interpretation of skin biopsy specimens. 4 Feb 1995. Available from: https://server.­aad.­org/forms/ policies/Uploads/PS/PS%20-%20Physician%20

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Choice%20of%20Consultant%20for%20Interpretation%20of%20Skin%20Biopsy%20Specimens.­ pdf. Accessed 15 Sept 2019. 45. United States Department of Health and Human Services Office of Inspector General. A roadmap for new physicians. Available from: https://oig.­hhs.­ gov/compliance/physician-education/roadmap_ web_version.­pdf. Accessed 15 Sept 2019. 4 6. Department for Health and Human Services. Centers for Medicare and Medicaid Services. Medicare program; physicians’ referrals to health care entities with which they have financial relationships: exception for certain electronic health records arrangements. Available from: https:// www.­g ovinfo.­g ov/content/pkg/FR-2013-12-27/ pdf/2013-30923.­pdf. Accessed 16 Sept 2019.

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Physician Advertising and Self Promotion Jonathan Kantor Contents Introduction – 334  istory of Advertising and Self-Promotion in Medicine – 334 H Ethical Arguments – 334 Classes of Advertising – 335

 onclusions: A Practical Approach to Advertising and Self-ProC motion – 338 References – 338

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_32

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nnLearning Objectives 1. To learn the background and history behind physician self-­promotion. 2. To understand the features of ethical selfpromotion.

Introduction

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Despite the myriad changes affecting the medical practice and knowledge base of dermatology, perhaps the greatest shift has been the increasing emphasis on the business of dermatology. Indeed, while some are happy to embrace the ethos that the business of dermatology is business, others cling to a vision of the ­ physician as healer and professional, above the fray and reluctant to soil his hands with the practicalities of business administration [1, 2]. Academic or employed physicians may be free to ignore the realities of running a dermatology practice as a business, yet those in group practices, and particularly the endangered species of the solo practitioner, ignore business considerations at their—and their patients’ and staff’s—peril. It is this tension between physician as healer and physician as businessperson that is in some ways at the core of the challenges surrounding physician advertising and self-promotion.

 istory of Advertising and H Self-Promotion in Medicine It is perhaps unsurprising that medicine— now representing upwards of 17% of the US GDP—has a long and storied past with advertising and self-promotion. From the guilds of the middle ages to the snake oil salesmen of the nineteenth century to the American Medical Association (AMA)’s ill-fated ban against advertising, the ways in which physicians advertise, and the restrictions placed on this activity from both within and without, have evolved markedly over generations [2]. Until 1982, the AMA banned all advertising by physicians; this ban was challenged by the landmark Goldfarb decision by the US Supreme Court, which held that the learned

professions were not exempt from federal ­ant-­trust prohibitions [2]. Ironically, the AMA’s twentieth-century restrictions on physician advertising—now perhaps seen through ­rose-colored lenses as reminiscent of a time where the ethical and financially naïve practice of medicine was unsullied by business concerns—were likely motivated (at least in part) by financial considerations. For almost a century, medicine was excluded from antitrust laws in the US, and it took a US Supreme Court decision (in a suit brought by the Federal Trade Commission) to ultimately lead medicine away from its historic restrictions on advertising. The Court found that the AMA was guilty of restraint of trade by prohibiting physicians (under the guise of medical ethics) from advertising [2]. Indeed, as hinted at by the Court’s decision, one motive for this advertising restriction may have been to help solidify the monopolistic power of the AMA and the medical profession in general; while perhaps counterintuitive, the central importance of minimizing internal competition for a monopoly means that for the AMA (and physicians in general), a ban on advertising has a net beneficial effect. Banning any advertising means that there is less information given to patients, no transparency in pricing, skills, and experience, and a maintenance of the economic status quo. Most dermatologists may therefore be surprised to realize that it was the restriction on advertising by physicians that was considered potentially unethical (and, at one point, illegal), since advertising was believed to exert downward price pressure (and increased choice) that would benefit patients. While there is little evidence for this pro-consumer benefit of advertising, this contrasts sharply with the contemporary push to limit or even ban physician advertising with the argument that any such advertising provides no benefit to patients [3–7].

Ethical Arguments As noted above, advertising is a delicate area; from an ethical standpoint, it could be argued that advertising bans promote restraint of

335 Physician Advertising and Self Promotion

trade, monopoly, and an exacerbation of the knowledge gap regarding therapeutic options and costs between physicians and patients. At the same time, many have argued that banning advertising is the only way to avoid physicians preying on unwitting patients with false or deceptive claims that may encourage inappropriate healthcare utilization. Moreover, concerns have been raised regarding inequalities that could be exacerbated by physician advertising; since advertising appeals to wealthier patients (they are reading the periodicals and may be more exposed to the television advertising), some have argued that advertising ­provides additional information and choice to the wealthier at the expense of outreach programs that may benefit the poor [8]. The Federal Trade Commission (FTC) argued almost 3 decades ago that advertising would be a boon for patients, driving costs down and increasing choice [9]. However, healthcare costs have only continued to increase. Moreover, until 1980, the AMA made a sharp distinction between advertising to disseminate information and advertising designed for differentiation. Many physicians, likely through the culture of medical training, implicitly recognize the difference between informing patients of the general abilities of dermatologists (we treat skin cancer) and differentiating ourselves from our competitors (I perform 5000 procedure per year). That said, these differences are subtle and potentially not meaningful in practice. Indeed, while there are many gray areas, concerns abound regarding differentiation, particularly when it is differentiation with no (or minimal) basis in fact [10–13]. An element of cognitive dissonance plays a role here as well; numerous studies have shown that physicians (and people in general) are unrealistic in their assessments of their own skills, particularly when compared with their peers. This has manifested in classic psychological experiments and even in self-­ assessment of dermatologic surgery skill, where residents consistently overestimate their own abilities [14]. This highlights an important subtlety, namely that physicians who attempt to differentiate themselves may not be doing so disingenuously; rather, cognitive biases may play a role intheir claims of superi-

ority [15]. When frank dishonesty is at play, this is clearly unethical; but when advertising is conducted with an open and honest approach without an attempt at spurious differentiation, many of the concerns are reduced significantly [10]. From an ethical standpoint, it may be less concerning (in terms of the physician’s intent) if a potential patient is misled accidentally, though the net effect on the patient may in some cases be the same.

Classes of Advertising A key question that should be asked is definitional: what is advertising? Dermatologists tend to think about advertising as a newspaper ad, a billboard, or the like, while in its broadest sense advertising could be understood as the practice of drawing attention to the services, procedures, or expertise that one has to offer. Yet there are many other forms of advertising and self-promotion that may be more insidious—and ethically fraught—such as selling cosmetic products in office setting (the very act of offering a product for sale could be considered an advertisement for that product) or even encouraging or advertising procedures that can be performed in the office. The latter are potentially more concerning simply because they are a form of stealth advertising; patients seeing a billboard understand that, by its nature, it is an advertisement, and the capitalistic rule of thumb of caveat emptor may be assumed. When a physician who is in a position of trust recommends a procedure of product, however, this is a much more ethically concerning step as the line between physician as patient advocate (with a fiduciary duty) and physician as business owner may become blurred [16, 17]. The AMA, American Academy of Dermatology (AAD), and even the FTC (as well as common decency and mores) all ban frankly untruthful or deceitful advertising [10, 13, 18]. Moreover, the disconnect between informational and differentiative advertising remains a source of debate, particularly since one person’s informational advertising is another’s overtly differentiative (and hence more ethically fraught) self-promotion [4, 8].

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This touches on an ethical distinction based on the intent of the advertiser, which may well represent a distinction without a practical difference. Indeed, while the AAD clearly states that advertising one’s experience and qualifications is legitimate, and supports “truthful, non-deceptive advertising” [18], questions have been raised regarding qualifications or experience that may simply sound better to an uninformed patient than to a well-educated physician. The AAD argues that “America’s patients deserve to know the licensure and qualifications of their health care providers,” echoing the sentiment that educating patients regarding the qualifications of their doctors is a good thing [18]. Yet the rise in “Top Doctor” awards and their ubiquity means that physicians may tout such accomplishments to the applause of their patients but the chagrin of their peers [19]. There is a subset of advertising for differentiation, however, that is perhaps the most concerning part of modern advertising—differentiation with degradation. This is the case where, rather than highlighting their own positive attributes (I am an expert in the field), the physician denigrates the skills, experience, or training of another physician (or group of physicians). This area is particularly problematic, since it clearly is not intended to (nor does it) benefit patients, but rather serves to aggrandize one physician over another; negative advertising, like negative political ads, focus on the (perceived) deficiencies of others, which is subtly, yet importantly, different from tooting one’s own horn. Indeed, it is particularly fraught since, as a general rule, ethical and accomplished physicians will almost never demean another physician. Were a real concern regarding another physician’s qualifications present, the ethical and appropriate step would of course be to report this to the proper authorities (or, better yet, first discuss with the offending physician), rather than stooping to bad-mouthing another physician to patients. An important added element in considering advertising is that while patients are the consumers of health care services, they often are not the only (or major) payors for these

services. If advertising encourages more costly (but not necessarily more effective) treatments, it may represent a source of societal injustice. Advertising may also lead to increased tension in the physician-patient relationship, as dermatologists may feel less than enthusiastic about a patient’s eagerness to try a heavily advertised treatment, and the patient may be frustrated by the dermatologists’ reluctance to prescribe what their medical experience deems unnecessary. Therefore, physicians are essentially advertising to a group that may (at least historically) have little price sensitivity and a significant element of loss aversion [2]. Some have argued that the very concept of beauty is oppressive, and therefore that the advertising of cosmetic procedures and products by dermatologists is simply unethical [20]. Painting broad societal trends with this postmodern brush is probably inappropriate and fails to capture the nuances surrounding advertising practices in dermatology offices [21, 22]. It does, however, raise an interesting distinction between an advertising campaign to capture new patients (and potentially encourage skin exams that could be beneficial to these patients) and advertising products and services to those who are already patients in a dermatologist’s practice (or the classic informational versus differentiative advertising approaches). It also echoes some of the concerns raised by advertising towards some ideal of beauty and touches on the question of whether skin diseases that do not cause functional impairment should be considered diseases per se (given their outsized effect on quality of life, in some ways such problems may have a greater impact on societal wellbeing than diseases leading to functional impairment). 55 The distinction between externally oriented advertising and internally oriented advertising may be ethically important as well; from a deontological perspective, the dermatologist has a different level of duty to her own existing patients than she does to the general public [6]. That is not to say it is ever legitimate to mislead, only that the fiduciary duty of a physician to her patients may be greater than that of the

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physician to the public at large. Moreover, the dermatologist is already in a privileged position of trust vis à vis her own patients, and therefore advertising to sell (perhaps dubious, perhaps valuable) products or services to this group requires a more deft ethical touch to avoid impropriety [23].

gists overall (a utilitarian argument). Similarly, making negative claims about others—not to be conflated with positively oriented differentiative advertising (though one could imagine a scenario in which passive-aggressive positive differentiative advertising could straddle the limits of acceptability)—is not appropriate; as above, it is both not the right thing to do (a normative argument) and can be counterproductive (a utilitarian argument).

Finally, questions have been raised regarding the advertising of academic affiliations; it is important to appreciate that there is bidirec>>Points of Emphasis tional responsibility at play here, as c­ linicians 55 Restrictions on physician advertising may who hold academic appointments should be motivated both by a drive for ethical make themselves available as requested by purity and, conversely, an attempt at maintheir departments, but it is also critical for the taining a functional monopoly. department to have clear criteria in place for 55 Deciding whether advertising is approtheir own expectations of activity and participriate hinges in part on the honesty of pation [24]. This is of particular importance the claims made as well as whether the given the significant inter-institutional heteroadvertising ultimately benefits the geneity in expectations, with some institutions patients and public at large. expecting only research activity, others desir55 Perhaps the most ethically fraught ing clinical or teaching activity, and still othadvertising is the most subtle—not billers holding departmental members to different boards and websites, but attempts to or individual standards. Indeed, with the rise upsell patients, promote cosmetic treatof global engagement as a criterion for acaments, or sell products, particularly demic activity, these lines may continue to when their legitimate value is questionbecome blurred even further, shifting a signifiable. cant onus of responsibility onto the department or institution so that expectations are clear and consistent. Case Scenarios Physicians, whether through training or inclination, often have a sense of discomfort 1. A young dermatologist, freshly out of surrounding advertising and self-promotion. residency, decides to start a practice in Avoiding advertising entirely, however, runs her hometown. She knows many of the the risk of riding the high horse of ethical local residents and wants to take out an purity and looking down on physicians who ad announcing her new office. She is choose to advertise, particularly when their concerned whether this activity seems advertisements arguably focus on patient edutoo commercial. cation (get your skin checked!) rather than dif 2. A dermatologist sees a patient and tells ferentiation. the patient that the physician they are Given all of the above issues: informaseeing is “not a real Mohs ­surgeon.” tional versus differentiative, patients versus public, and intent versus effect, what are some useful guidelines for understanding when advertising is ethical? Honesty and non-­ Analysis of Case Scenarios disparagement are two pillars of ethical advertising. The claims made must be true; 1. This is a legitimate situation and the one cannot claim to have won the Nobel Prize dermatologist should feel justified in if it did not occur, as this is both clearly the announcing her new practice to the wrong thing to do (a normative argument) public. There is no need for her to hide and undermines patients’ trust in dermatolo-

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in the shadows, and indeed advertising her presence could increase the perceived choice among those in her community. 2. This disparagement is never acceptable. It says far more about the alleging physician than it does about the target of the disparagement. If a physician wishes to open dialogue with another physician regarding their qualifications, this is legitimate; involving patients in what is ultimately a turf war is never acceptable and sends an inappropriate and unprofessional message [25].

place regarding dermatologists’ advertising practices; these hinge largely on avoiding deceitful practices and false claims and the importance of honesty in outlining qualifications [18].

References 1.

2. 3.

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Advertising is, increasingly, a reality of modern-­day medicine, whether through traditional forms, such as newspaper ads or billboards, or modern approaches such as social media accounts. How should the ethical dermatologist approach these areas? It is legitimate to advertise, and it is alright to speak of your accomplishments. Classically, advertising for differentiation has been looked down upon by the AMA, yet it is the cornerstone of society-level advertising campaigns such as those by the AAD (see a board-­ certified dermatologist!) and other groups. Differentiation based on legitimate differences (or even appeals to what can be seen as legitimate yet unimportant differences) is not necessarily problematic. Negative or disparaging advertising is never acceptable; if the target of the advertising is truly deserving of scorn, this should be accomplished not through smear campaigns but through above-board appeals (such as those to the Academy’s Professionalism and Ethics Committee) or, better yet, by direct engagement of the putatively offending party. There is almost never a legitimate reason for a physician to speak ill of another physician, and typically this activity says more about the physician conducting the smear campaign than its target. The AAD has some policies in

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Rosen AR, Littman-Quinn R, Kovarik CL, Lipoff JB. Landscape of business models in teledermatology. Cutis. 2016;97(4):302–4. Dyer AR. Ethics, advertising and the definition of a profession. J Med Ethics. 1985;11(2):72. Delmas C. Three reasons to ban advertising for health care services. Am J Bioeth. 2014;14(3):51– 2. Fuster V. The hazards of physician advertising. J Am Coll Cardiol. 2015;66(22):2561–2. Schenker Y, Arnold RM, London AJ. The ethics of advertising for health care services. Am J Bioeth. 2014;14(3):34–43. Tomycz ND. A profession selling out: lamenting the paradigm shift in physician advertising. J Med Ethics. 2006;32(1):26. Yarborough M. Physician advertising: some reasons for caution. South Med J. 1989;82(12):1538. Junewicz A. Of playoff tickets and preschools: health care advertising and inequality. Am J Bioeth. 2014;14(3):55–6. Kwoka J. The Federal Trade Commission and the professions: a quarter century of accomplishment and some new challenges. Antitrust Law J. 2005;72(3):997–1056. Carbonell V. If health care advertising is a problem, FDA-style regulation is not the solution. Am J Bioeth. 2014;14(3):46–7. Jones JW, McCullough LB. Is medical advertising always unethical, or does it just seem to be? J Vasc Surg. 2015;61(6):1635–6. Maihofer MG. Is it ethical to advertise claims of superiority? J Mich Dent Assoc. 2015;97(4):26. Maihofer MG. Going after unethical advertisers. J Mich Dent Assoc. 2015;97(6):20. Alam M, Nodzenski M, Yoo S, Poon E, Bolotin D. Objective structured assessment of technical skills in elliptical excision repair of senior d ­ ermatology residents: a multirater, blinded study of operating room video recordings. JAMA Dermatol. 2014;150(6):608–12. Patel MS, Volpp KG, Asch DA. Nudge units to improve the delivery of health care. N Engl J Med. 2018;378(3):214–6. Gorin M. Health care advertising and the scope of fiduciary duties. Am J Bioeth. 2014;14(3):48–9. Hultman CS, Wagner IJ. Professionalism in plastic surgery: attitudes, knowledge, and behaviors in medical students compared to surgeons in training

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and practice--one, but not the same. Ann Plast Surg. 2015;74 Suppl 4:S247–54. Resneck JS, Bercovitch L, Knable A. Position statement on truth in advertising & professional credential disclosure. Professional and ethical standards for dermatologists. 2012. Available from: https://www.­a ad.­o rg/forms/policies/uploads/ ar/1.­%20professional%20and%20ethical%20standards%20for%20dermatologists%202012.­pdf. Kirsch B, Grant-Kels JM, Bercovitch L. The ethics of “Top Doctor” awards: a tangled web. J Am Acad Dermatol. 2013;69(5):792–4. Lowe BJ. Slathered, zapped, nipped, and tucked: an ethical analysis of cosmetic dermatology. Ethics Med. 2017;33(3):159–69. Graham N. Medicine and the media: the hard sell in cosmetic surgery advertising. BMJ. 2010;340(7748):689.

22. Nejadsarvari N, Ebrahimi A, Ebrahimi A, Hashem-Zade H. Medical ethics in plastic surgery: a mini review. World J Plast Surg. 2016;5(3):207–12. 23. National Institutes of Health Consensus Development Conference statement on diagnosis and treatment of early melanoma, January 27–29, 1992. Am J Dermatopathol. 1993;15(1):34–43; discussion 6–51. 24. Chiaravalloti A, Kels BD, Grant-Kels JM. Ethical issues of honesty in advertising: academic affiliation or exploitation? J Am Acad Dermatol. 2016;75(3):645–7. 25. Stern RS. Cost effectiveness of Mohs micro graphic surgery. J Invest Dermatol. 2013;133(5):1129–31.

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Dermatoethics: The Ethics of Concierge Medicine Alexandra Charrow, Ruby Kwak, and Vinod E. Nambudiri Contents The Ethics of Concierge Medicine – 342  n Overview – 342 A Ethical Concerns – 342 The Benefits of Concierge Practice – 344

Conclusion – 346 References – 347

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_33

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nnLearning Objectives 1. To understand the ethical arguments for and against concierge practices of dermatology. 2. To further explore the ethical obligations dermatologists have to provide both affordable care and accessible care and how such obligations may impact a concierge practice.

The Ethics of Concierge Medicine An Overview

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While many private practice models exist, the “concierge” or “retainer” practice has become an increasingly popular refuge for physicians exasperated by long hours, increased insurance demands, and decreased time with patients. Concierge practices are generally feebased practices in which physicians maintain a dramatically limited patient panel; studies estimate concierge practices maintain around 38% of their previous panel size [1]. Patients pay annual or upfront fees that afford them services including longer appointment times, same-day visits, house calls, and other dedicated attention. Annual fees offset the losses of a smaller panel and in turn allow for more individualized time for patients in the practice. Annual fees may be used alongside commercial insurance or with cash-only practice models not involving commercial insurance. Additionally, cash-only practices may be varied: patients may pay directly for each service rendered, increments of the provider’s time, or other specified dedicated unit of care. The concierge model has become popular in primary care settings where burnout is high, patient time has dwindled, and reimbursements have remained stagnant. Recent estimates suggest that 6% of physicians overall work in either concierge or cash-only practices; the specific number of dermatologists working under such models has not been well characterized [2]. Many dermatologists are already familiar with practices where payment is obtained outside the insurance model from

..      Table 33.1  Models of concierge practice Models of concierge practice        

Cash-only, fee-for-service Subscription fees annually with additional fee-for-services Subscription fees only, services incorporated into annual fees Subscription + insurance: Insurance covers most services; however subscription allows for increased access

exposure to cosmetic practices which are generally cash-only fee for service. A number of American cities have dichotomized dermatology markets composed primarily of academic practices on the one hand, and cash-only private practices on the other. As burnout in dermatology continues to increase, concierge and cash-only models may become increasingly prevalent as a potential means of preserving physician satisfaction (. Table 33.1)  

Ethical Concerns Access There are a number of ethical concerns with respect to concierge and cash-only dermatologic practices. A leading consideration for physicians who are weighing the pros and cons of such a move are the ramifications of concierge practices on patient access. As these newer practice models are designed to afford physicians more time with individual patients, they frequently involve significantly smaller patient panels, thus limiting access across the overall patient population. Physicians have a right to establish retainer practices and to contract with their patients for needed services [3]. However, physicians also have a fiduciary duty to their patients as outlined by the American Medical Association and other professional organizations. Explicitly, they must find a new provider for patients who opt out of the concierge practice for either financial or personal reasons [4]. While these duties must be balanced against the autonomy of physicians to work as they

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please, the limited supply of physicians and the critical need for healthcare, their professional duty may occasionally trump their autonomy. While physicians have a right according to the AMA to establish the practice structure of their choosing, the autonomy to do so is autonomy with respect to patient care and not simply physician preference [5]. A physician, according to the AMA and ethical scholars who study this subject, can establish a concierge practice if he or she believes it will be in the best interest of patients, though not simply if he or she thinks it will be in his or her best interest from a monetary ­perspective [6]. Physicians are often under at least some obligation, for instance, to care for individuals during emergencies, even if this involves risks to the doctor [5]. These obligations are especially true when a particular physician is the only physician on the scene of a natural disaster or infectious disease outbreak. By extension, in resource-poor areas or regions where dermatologic services are limited, a dermatologist might have a duty to retain a large panel to fulfill her obligations to her current patients. There are some bioethicists who feel that those duties extend not only to a physician’s own patients but to potential patients in the community as well [7]. There are a number of bizarre ethical outcomes of such a principle, however. Such duties would then disproportionately limit those dermatologists who choose to practice in resource-poor or subspecialty-­ poor settings by limiting their freedom to start alternative practices. Such an outcome would suggest, intuitively, that duties likely extend only to a physician’s specific patients and not to an extended community of potential patients; otherwise, such a principle would penalize physicians already opting to treat communities in need. >>Points of Emphasis 55 Physicians have a right to establish retainer practices and to contract with their patients for needed services 55 However, in resource-poor areas or regions where dermatologic services are limited, a dermatologist might have a duty to retain a large panel to fulfill her obligations to her current patients

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Diversity An added concern for dermatologists who reduce overall access is that they may disproportionately limit access for one or more groups. Concierge practices overwhelming attract white and wealthy patients despite a requirement that physicians provide non-­ discriminatory care to patients regardless of race or ethnicity [6]. While such disparities in access exist in standard academic and private practice settings as well – due to the location of particular hospitals, the degree of segregation within cities, and the willingness of hospital systems to accept specific insurers – these disparities run the risk of magnification under concierge practice models. As disparities already exist in dermatologic access, concierge dermatology practices have the potential to exacerbate them. Standard private-practice and academic models continue to have flaws associated with access disparities, and this concern deserves additional attention from all dermatologists regardless of practice type. >>Point of Emphasis 55 Concierge practices overwhelmingly attract white and wealthy patients despite a requirement that physicians provide non-­ discriminatory care to patients regardless of race or ethnicity

Obligations Related to Training An additional ethical consideration to balance is the role of all physicians as former trainees. All practicing dermatologists in the United States began their careers as dermatology residents. Medicare is the largest funding source for training programs in the United States through direct and indirect medical education payments. As residents learn, grow, and develop their skills through the financial support of the taxpayer-funded Medicare program, one could argue there exists some duty to serve Medicare patients competently and completely once fully trained. By extension, because taxpayers are responsible for the funding of Medicare, such an argument of obligation could extend to all Americans. How long such obligations last and how far they extend is not clearly established, and dermatologists who have devoted considerable

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portions of their career to serving Medicare patients may feel entitled to discontinue that care when they choose to do so. The non-monetary corollary to such an argument is that most residents learn and train on a range of patients – wealthy patients, poor patients, and patients across multiple races and ethnicities. When patients are the subject of a resident’s first Mohs surgical layer or first excision, a resident’s first prescription for rituximab or a resident’s first skin exam, the patients incur some risks (and perhaps some benefits as well). If those patients endure these risks, perhaps the benefits of a fully trained resident should be experienced by all patients as well. Such an argument is easily dismissed when one considers that many dermtologists go on to practice with special populations  – children, veterans, international patients, without ever specifically “paying back” the patients who they learned on. Both arguments, in concert, do however demonstrate that there are monetary and educational benefits residents accrue from society at large and suggests that residents might have responsibilities to those groups. For how long such duties and responsibilities last and to whom they extend is less clear.

be conducted whether the physician feels they are medically necessary or not. Without proper evaluation, it is not known whether this is a relevant factor. Further investigation is needed. >>Point of Emphasis The customer-service side of concierge practice appears better than that of traditional practices – with shorter wait time, access to house calls, and greater availability. However, there is limited if any evaluation of the quality of care delivered in these practices in the literature.

The Benefits of Concierge Practice

While burnout is somewhat lower in dermatology than in other fields, over the past 10 years, the field has not been shielded from the pressures of modern medicine. Recent studies suggest that burnout among dermatologists has increased at rates faster than the overall rate among physicians and note that up to 33% of dermatologists report some form of burnout [9]. Major contributions to physician burnout include excessive documentation, decreasing compensation, and increased time in front of computers and screens [10]. In addition to per>>Point of Emphasis sonal harm and disaffection, burnout contribPhysicians who train in the US do so at the utes to poor patient care and ultimately leads expense of the taxpayer-funded Medicare to worse outcomes [11]. Without significant plan. Are they not obligated to serve the payment and bureaucratic changes, it is possivery patients who made their training posble that an increasing number of physicians sible. And for how long? will leave medicine altogether [12]. Concierge medicine may keep more physicians practicing Care Quality for longer, preventing an even greater drop in Finally, there is some concern that concierge the number of available dermatologists and care is inferior care. Certainly, the customer-­ other physicians [13]. While the number of concierge practices is service side of concierge practice appears better than that of traditional practices  – with not known, some dermatologists practicing in shorter wait time, access to house calls, and academia effectively have variations on a congreater availability. However, there is limited cierge practice--having limited their clinic if any evaluation of the quality of care deliv- numbers in the setting of administrative duties ered in these practices in the literature [8]. or by bolstering their staff with fellows and Moreover, one could imagine that such care research assistants. This enables some acapractices would incentivize procedures and demic dermatologists to provide concierge-­ interventions dictated by the patient regard- level care to the patients they serve. Certainly, less of need; when a patient is paying a retainer many key elements of a concierge practice do he or she may expect specific interventions to not exist in academia, however when bolstered

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with residents, the level of care is often more extensive than might be provided in a private practice. While these models are not explicitly concierge practices, they fill a similar niche by providing additional dedicated care to a narrow group of patients and may serve to complicate considerations of concierge practices. Additionally, there are patient considerations. While a physician’s panel is necessarily smaller in the concierge setting, each individual patient may have more time with the physician, more individualized attention, and greater satisfaction with the medical experience [14]. For patients who desire such service, concierge practices fulfill their needs. For patients with complex medical histories, extra time with the patient can be exceedingly valuable as well. Moreover, not all concierge practices are created equal (or unequal as the case may be). Some concierge practices have sliding-scale fees for those with lower incomes, while others have annual retainers that are more modest. Many concerns about inequality are mitigated by these changes and could allow for a more ethical practice of concierge dermatology. Unfortunately, because so much of dermatology involves procedures, without insurance coverage many of those procedures become prohibitively expensive and as such a concierge practice with a low retainer fee may still be inaccessible to all but the wealthiest of patients [15] (. Table 33.2).  

..      Table 33.2  Ethical ramifications of concierge practices Positives

Negatives

Decreases physician burnout Allows for greater physician autonomy Keeps practice ownership in the hands of physicians Provides patient-centered care with increased time with patients May prevent the closing of smaller practices by providing financial stability

May limit access for poorer or minority patients May provide lower-quality care in an effort to satisfy paying patients Limits a physician’s ability to treat the patients that “funded” their residency training

>>Points of Emphasis 55 Concierge medicine may keep more physicians practicing for longer, preventing an even greater drop in the number of available dermatologists and other physicians 55 While a physician’s panel is necessarily smaller in the concierge setting, each individual patient may have more time with the physician, more individualized attention, and greater satisfaction with the medical experience

Case Scenario

Case 1 Dr. Brenner has been working in a large private dermatology office for the past 12 years. Recently, however, Dr. Brenner has become increasingly “burned out” despite interventions aimed at imcreasing physician satisfaction. She is frustrated with the limited time she spends with her general dermatology patients – typically no more than 7 minutes with each one. At least one halfday per week is spent negotiating with insurance companies over particular treatments, and declin-

ing commercial insurance reimbursements have forced her to again increase the number of patients she sees each day, leaving less time with each patient. Her practice will not allow more time with patients, citing the cost of overhead as a driver for each provider to see as many patients as possible. One of her co-workers recently left the practice to begin a cash-only dermatology clinic and another departed to start a concierge, fee-based practice -- both appear tremendously profession-

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ally satisfied with their decisions. Dr. Brenner wonders if she should pursue a similar track, and seeks your advice as her previous residency mentor regarding the ethics of these models. What should you recommend? Dr. Brenner is within her right to pursue a concierge practice model. The AMA specifically allows for physicians to practice as they please. There are, however, certain obligations she has to her current patients. She must ensure that there is a safe transition for all of her patients and that they are cared for by an appropriate provider. Of course, if there are ways to alleviate the practice stresses she has been experiencing without switching to a concierge practice, those avenues should probably be considered as well. Scribes and extra nursing staff can offset administrative difficulties of caring for patients. Some physicians choose to see fewer patients and take a pay cut to do so, ensuring they are able see patients for longer periods of time. Any of these options would support Dr. Brenner while allowing her to continue to practice in her current payment environment. Case 2

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Dr. Washington is caring for Mr. Jones, a lovely 85-year-old gentleman with bullous pemphigoid, maintained on rituximab and prednisone. Mr. Jones has multiple co-­morbidities that complicate use of prednisone and has had labile blood sugars.

Conclusion The move from a traditional practice to concierge models brings up multiple ethical questions: the physician’s obligation to be accessible to patients, a physician’s duty to current paitents, a physician’s duty to society based on the source of his or her training, and questions about maintaining quality of care. There are also questions surrounding the root cause of such a transition  – is the drive towards concierge practices merely a reflec-

At his age, and in the setting of limited mobility, patient visits typically take 30–45  minutes. Unfortunately, Dr. Washington’s practice requires she see 17 patients in a half day and each visit with Mr. Jones puts her behind for the rest of the day. One day, Mr. Jones asks Dr. Washington: Doc, you always seem rushed with me. I would be happy to pay extra for more time. When Dr. Washington returns home, she wonders whether this or similar arrangements is appropriate. A concierge model of care may be most beneficial to patients with complex care in need of longer patient visits and more time with a physician. Patients with bullous pemphigoid and similar blistering conditions often have posttraumatic stress disorder (PTSD) related to their condition [16] and having a physician available for both counseling and treatment would be exceptionally beneficial for this patient population. House calls, 24-hour availability, and other concierge-level practices are not practical in a large group or academic practice. Dr. Washington could potentially create a model in which she is able to serve high-­need patients for a fee while continuing to see her general dermatology patients. Some concierge practices have a sliding scale while others have a nominal fee associated with the practice and accept commercial insurance. Painting all concierge practices with the same brush may simplify the ethical questions at stake but it would also overlook critical benefits of such a practice.

tion of the increasing hold capitalism has on medicine and, by extension, dermatology? Or, are dermatologists flocking to concierge practices because they are experiencing dissatisfaction with professional pressures? Concierge medicine may limit access for all patients but increase access for particular patients. Such practices may improve care for those able to pay while reducing overall coverage for society at large. The motivations, setting, and form a concierge practice assumes carry significant ethical implications.

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Medication Discount Programs Vignesh Ramachandran, Abigail Elizabeth Cline, and Steven R. Feldman Contents Introduction – 350 Conclusions – 355 References – 355

S.R. Feldman has received research, speaking and/or consulting support from a variety of companies including Galderma, GSK/Stiefel, Almirall, Leo Pharma, Boehringer Ingelheim, Mylan, Celgene, Pfizer, Valeant, Abbvie, Samsung, Janssen, Lilly, Menlo, Merck, Novartis, Regeneron, Sanofi, Novan, Qurient, National Biological Corporation, Caremark, Advance Medical, Sun Pharma, Suncare Research, Informa, UpToDate and National Psoriasis Foundation. He is founder and majority owner of 7 www.­DrScore.­com and founder and part owner of Causa Research, a company dedicated to enhancing patients’ adherence to treatment. V. Ramachandran and A. Cline have no conflicts to disclose.

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nnLearning Objectives 1. Recognize recent pricing trends for ­dermatology medications. 2. Describe pharmaceutical company-­ sponsored programs that limit out-ofpocket costs for patients. 3. Analyze ethical consequences of medication rebate and discount programs.

Introduction Medication prices have increased across the board over the last decade, and dermatology has been profoundly affected. Between 2009 and 2015, the price of 19 commonly-used brand name therapies increased by an average of 401% [1]. For instance, three topical anti-

neoplastic drugs increased by 1240%, and five topical corticosteroids increased by 290%. Over this time-period prices of even generic medications have increased by 279%. High costs may make many therapeutic options unavailable to some patients. These price increases for dermatologic medications continued in 2019 (. Table 34.1). Many insurance companies address these increasing costs by raising premiums, incentivizing patients to select less expensive therapies, or instituting step therapy. In addition to sometimes requiring prior approval by the insurer for certain medications, insurers frequently increase the direct cost to patients for more expensive medications through tiering of medications or designating certain medications as being “preferred” on their formular 

..      Table 34.1  Drug pricing data (collected between November 2015 and March 2019 from GoodRx and adapted from the AAD) 11/23/2015

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3/5/2019

3/29/2016

Lowest price

Highest price

Lowest price

Highest price

Lowest price

Highest price

Aclometasone (15 g of 0.05%) (cream)

$23.34

$45.00

$14.43

$45.00

$19.99

$46.00

Adapalene (45 g of 0.1%) (gel)

$80.40

$165.00

$64.00

$165.00

$80.28

$231.96

Benzoyl peroxide-clindamycin (45 g of 1.2%/5%) (gel)

$78.40

$170.00

$66.00

$170.00

$105.50

$204.55

Clindamycin Phosphate (30 g of 1%) (Gel)

$21.91

$107.00

$21.91

$107.00

$33.88

$108.00

Clindamycin Phosphate (40 g of 2%) (Cream)

$32.01

$83.85

$32.01

$88.20

$35.06

$87.10

Clobetasol (50 g of 0.05%) (Foam)

$87.72

$280.78

$87.72

$269.82

$93.18

$297.00

Clobetasol (59 ml of 0.05%) (Lotion)

$115.37

$318.11

$115.37

$318.11

$78.35

$149.35

Clobetasol (60 g of 0.05%) (Cream)

$18.50

$288.75

$18.50

$350.97

$59.40

$338.00

Clobetasol (60 g of 0.05%) (Ointment)

$26.73

$276.90

$26.73

$396.38

$52.32

$400.00

Dapsone (100 mg) (30 tablets)

$24.57

$54.99

$24.57

$82.60

$30.78

$90.00

Derma smoothe FS oil (118.28 ml of scalp)

$90.42

$305.00

$71.68

$305.00

$38.53

$152.00

(continued)

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351 Medication Discount Programs

..      Table 34.1 (continued) 11/23/2015

3/5/2019

3/29/2016

Lowest price

Highest price

Lowest price

Highest price

Lowest price

Highest price

Desonide (15 g of 0.05%) (cream)

$11.75

$90.00

$11.75

$90.00

$14.92

$70.00

Desonide (15 g of 0.05%) (ointment)

$13.49

$90.00

$13.49

$90.00

$15.31

$58.00

Desoximetasone (15 g of 0.05%) (cream)

$28.59

$72.43

$29.58

$57.94

$23.98

$56.04

Doxycycline Hyclate (100 mg) (20 capsules)

$28.88

$85.00

$28.88

$76.97

$13.55

$78.00

Doxycycline Hyclate (50 mg) (20 capsules)

$15.11

$37.78

$15.11

$40.55

$13.73

$22.20

Fluocinonide (60 g of 0.05%) (cream)

$39.95

$143.39

$35.97

$143.39

$43.83

$160.00

Isotretinoin Capsules (30 mg) (30 capsules)

$192.81

$378.26

$150.13

$376.91

$116.94

$317.99

Methotrexate (2.5 mg) (24 tablets)

$32.77

$114.00

$29.49

$114.00

$19.51

$80.00

Metronidazole (45 g of 0.75%) (cream)

$57.79

$199.99

$57.79

$199.99

$58.05

$198.00

Metronidazole (45 g of 0.75%) (gel)

$61.14

$135.38

$61.14

$135.38

$36.38

$319.00

Minocycline extended release (45 mg) (60 tablets)

$535.08

$1447.80

$389.50

$1447.80

$356.89

$856.36

Mycophenolate Mofetil (Cellcept) (500 mg) (60 capsules)

$27.05

$126.25

n/a

n/a

$27.00

$447.00

Tacrolimus (30 g of 0.1%) (ointment)

$100.64

$203.44

$82.53

$202.09

$71.51

$260.00

Temovate (30 g of 0.05%) (ointment)

$18.86

$174.75

$18.86

$201.56

$32.70

$234.00

Tetracycline (500 mg) (60 capsules)

$141.73

$517.25

$8.79

$834.38

$198.06

$948.00

Tretinoin (45 g of 0.025%) (cream)

$40.12

$225.00

$50.36

$225.00

$54.65

$274.00

Ultravate (Halobetasol) (50 g of 0.05%) (Cream)

$78.43

$161.00

$47.98

$161.00

$54.92

$239.00

Urea (142 g of 50%) (cream)

$24.15

$95.71

$24.15

$53.05

$19.07

$46.96

Westcort (hydrocortisone valerate) (15 g of 0.2%) (Cream)

$12.73

$133.50

$12.73

$133.50

$27.20

$75.00

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ies. These strategies are often based at least in part on cost to the insurer negotiated by the pharmacy benefit manager. Drug manufacturers have sought to counter some of these steps. One approach involves pharmaceutical industry sponsored programs to reduce the direct (or out-of-pocket) costs of medications to consumers. While some of these programs are based on the patient’s ability to pay, more frequently they are coupon-­ based programs available to any patient [2].

The company agrees to pay a significant part (or all) of a patient’s out-of-pocket cost for the medication. Although these programs can lower the direct cost to a patient, they raise ethical concerns. Such programs thwart insurers’ attempts to require patients to directly share in and consider the increased costs of certain medications. As a consequence, overall medication expenses to insurers and society at large may increase.

Case Scenario

Case 1

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Dr. Jones works as a general dermatologist in a small suburban dermatology group practice since completing her residency training 1  year ago. Recently, she saw a patient, Mr. Flint, for several actinic keratoses distributed over his forehead. Mr. Flint reports that he has been prescribed a branded topical 5-fluorouracil 0.5% cream in the past and has responded well to this treatment. Mr. Flint asks that he be given the same prescription. Dr. Jones provides Mr. Flint a new prescription for the branded medication and a follow-up appointment in 4  weeks. Two days later, Mr. Flint leaves Dr. Jones an angry message about not being able to afford his medication. Mr. Flint reports that he could afford this medication in the past, but that the price has increased too much. Mr. Flint asks that Dr. Jones provide him with coupons to reduce the cost of the medication. Should Dr. Jones contact the pharmaceutical company to request these discount coupons? Should Dr. Jones write a new prescription for generic 5-fluoruracil 5% cream because that should be more affordable? Case 2 Dr. Grant sees Mr. Broke for extensive psoriasis. The patient notes significant itching and scaling that has not responded well to many different topical medications tried over the past 6 months. Following a thorough evaluation and discussion of risks, benefits, and alternatives, Dr. Grant prescribes Expensimab, a new biologic drug for psoriasis. She chooses this due to

its favorable safety profile and reported efficacy. Mr. Broke’s insurance company will pay for 50% of the cost of Expensimab, or 100% of the cost of methotrexate. The pharmaceutical sales representative for Expensimab offers to enroll Mr. Broke in a program to cover his out-ofpocket costs for the medication due to his low income. Ethical Considerations Discount programs can reduce direct costs to patients, but they may also raise ethical concerns for patients, physicians, and society. The discount programs create a moral hazard. The decision-makers (patients) are relatively insulated from the harms or consequences of their decisions. Reduced costs for patients through these discount programs frequently lead to increased expenses for physician, third-party payors, and society as a whole. These programs require more time and resources from physicians. They must identify and manage patient qualifications as well as seek out coupons or programs relative to the easier and more direct process of prescribing lower cost generic alternatives. For third-party payors, these discount programs circumvent efforts encouraging physicians and patients to consider the higher costs of certain medications. Perversely, a coupon for a branded medication may make the patient’s direct out-of-pocket cost for a prescription less than the cost for a generic alternative. However, the insurer’s expense for the branded medication will be substantially greater, which may

353 Medication Discount Programs

lead to increased premiums for beneficiaries. When this effect is generalized to a societal level, the result is continually increasing cost for medications. The ethical arguments for and against coupon and rebate programs tend to rely on different principles of bioethics. The principles of specific or individual beneficence and autonomy generally support such programs. A decreased out-of-pocket cost for medications provides an immediate and tangible benefit to patients. Similarly, decreased out-of-pocket costs improve patient access to medications. In addition, the programs further patient autonomy if they allow patients to receive medications they prefer. Price becomes much less of a salient consideration for patients choosing among treatment alternatives. Furthermore, it’s possible that the increased accessibility improves treatment adherence and therefore medical outcomes. On the other hand, other bioethical principles, such as justice and general non-­maleficence suggest that these discount programs unequally distribute burdens and may indirectly harm other patients. Justice dictates that the benefits and burdens of therapies are equitably shared among members of society. For one thing, medication discounts are not equally available to all members of society. Public insurance programs such as Medicare and Medicaid, for example, prohibit participation in coupon and rebate

>>Points of Emphasis 55 The physician’s desire to provide the patient in front of them with, theoretically, the most affordable and best treatment option by providing coupons demonstrate the principles of beneficence and autonomy. 55 Medication discount coupons may exacerbate a larger fundamental drug pric-

programs. In addition, by artificially removing price considerations when choosing treatments, patients are likely to choose more expensive alternatives than they may have otherwise. The medication does not immediately become less expensive overall. While the patient has a lower direct cost, the insurer will almost certainly have a higher cost relative to alternatives. Furthermore, this higher cost contributes to rising premiums for all of those insured. A single patient’s savings comes at the expense of the rest of those insured. On a more abstract level, such discount programs may exacerbate already increasing medication prices. By artificially maintaining demand, there is less incentive for the manufacturer to lower price, and the normal brake on prices built into the economy, the law of supply and demand, fails to apply. Thus, avoiding harm (non-maleficence) and promoting justice would discourage the use of discount and rebate coupon programs. Similar to the principles of justice and non-­ maleficence, the ethical concept of utilitarianism also challenges coupon and rebate programs. Utilitarianism states that the most ethical approach is the one that will do the most good for the most people. Discount programs may offer a tangible, quick benefit to some patients, but it comes at the expense of higher insurance premiums and most costly medications for all.

ing problem, raising issues of utilitarianism and justice for physicians to consider. 55 Dermatologists should familiarize themselves with costs for commonly used medications, the availability of generic alternatives, and direct patient charges from common insurance plans.

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Case Analysis

Case 1 With all of the other demands on Dr. Jones, is it reasonable to hold her responsible for offering cost-effective medications? The American Academy of Dermatology (AAD)’s “Position Statement on Patient Access to Affordable Treatments” notes that dermatologists are committed to providing the most effective and costconscious care and therapies to their patients [3]. Dr. Jones is in a unique position to direct her patients’ drug purchases, since they cannot obtain prescription drugs without her [4]. Her patients’ dependence on her decision making suggests that Dr. Jones should be cognizant of helping patients receive ­ cost-­ effective therapies by prescribing lower cost medications when available. Although providers are frequently aware of the need for cost-effective prescribing, studies

show they are often unaware of the costs of patients’ medications [5]. Providers recognize that not having prescription drug insurance places a heavy financial burden on patients. While more than 70% of providers reported that choice of medication was influenced by whether or not a patient had prescription medication insurance, many forgot to ask about the patient’s prescription drug insurance plan when actually writing prescriptions [4]. Responsibility for utilizing cost-effective medications also rests with patients. Understanding one’s insurance plan, as well as how co-pays and deductibles work, allows patients to collaborate for optimal prescribing practices. Further recognizing how individual choices impact overall plan and societal costs provides even greater benefits.

Case Analysis

Case 2

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Dr. Grant feels that Expensimab is the best medication to treat Mr. Broke. The safety and efficacy for Expensimab are superior to methotrexate. However, the insurer would like Mr. Broke to first try the less costly alternative and attempts to incentivize this through 100% coverage for methotrexate and only 50% coverage for Expensimab [6]. Is it appropriate for Dr. Grant to connect Mr. Broke with the industry-sponsored discount program based on his inability to pay for 50% of the cost of the medication? The fundamental differences between this case and the first one are (1) the patient’s ability (v. simple preference) to pay for the more expensive medication and (2) demonstrated superiority of the more expensive medication. Both of these differences have considerable ethical implications. When a more expensive medication is more effective and safer than an alternative, obtaining that medication at any cost is not necessarily justified. Rather, it remains important to consider the expense and impact on patients, physicians, third-party payors, and society as a whole.

A slightly more efficacious medicine that comes at a much greater expense may be difficult to justify. In case 2, the much better safety and efficacy profile of Expensimab relative to methotrexate shifts the ethical scales toward favoring the branded biologic—even considering the harms from the discount program. Another important consideration in case 2 is Mr. Broke’s ability to pay for the medication. There seems to be a distinction between someone who would rather not spend money on an expensive medication (and instead use the money toward a cruise vacation) versus someone who cannot spend money on an expensive medication because that money is needed to pay for rent and food. These distinctions definitely involve shades of gray depending on the costs of the medications and the patient’s financial situation. Nevertheless, a patient’s ability to pay and a discount program’s attention to this issue carries some moral weight. The financial need-based discount program for Expensimab fundamentally differs from an indiscriminate coupon program, because it enables him to obtain a superior medication that he would otherwise not be able to access.

355 Medication Discount Programs

Conclusions Navigating medications costs can be difficult in the dermatology clinic. Medications, both generic and brand-name, have increased in price within the last decade. Physicians and patients are not always aware of insurance coverage, copayment, and preferred medications. Doctors’ lack of knowledge about medication costs can lead to patient frustration and poor treatment adherence resulting in worse outcomes. Dermatologists should familiarize themselves with the costs for commonly used medications, the availability of generic alternatives, and direct patient charges from common insurance plans. Doctors have an obligation to the patient in front of them as well as some obligation to all patients and society. There is a responsibility to optimize an individual patient’s care as well as optimize resource utilization. These responsibilities can conflict at times and create moral dilemmas. At the patient level, principles of individual beneficence and autonomy manifest with the physician’s desire to provide the patient in front of them with, theoretically, the most affordable and best treatment option by providing coupons. The face-to-­ face conversation with a patient and physicians’ general desire to heal makes this aspect

of the ethical conflict particularly easy to grasp. On the other hand, medication discount coupons may exacerbate a larger fundamental drug pricing problem, raising issues of utilitarianism and justice for physicians to consider.

References 1. Sarpatwari A, Kesselheim AS.  Navigating the dermatological drug cost curve. JAMA. 2016;315(24):2724–5. 2. Zilbermint M, Schiavone L. To give or not to give: the challenge of pharmaceutical coupons. J Clin Ethics. 2018;29(4):319–22. 3. Position statement on patient access to affordable treatments. American Academy of Dermatology. 2017. Available at server.aad.org/Forms/Policies/ Uploads/PS/PS%20-%20Patient%20Access%20 to%20Affordable%20Treatments.pdf ? Accessed 28 November 2020. 4. Ernst ME, Kelly MW, Hoehns JD, Swegle JM, Buys LM, Logemann CD, et al. Prescription medication costs: a study of physician familiarity. Arch Fam Med. 2000;9(10):1002–7. 5. Allan GM, Lexchin J, Wiebe N. Physician awareness of drug cost: a systematic review. PLoS Med. 2007;4(9):e283. 6. Abdelnabi M, Patel A, Rengifo-Pardo M, Ehrlich A. Insurance coverage of biologics for moderate-­tosevere psoriasis: a retrospective, observational 5-year chart review. Am J Clin Dermatol. 2016;17(4):421–4.

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Educator, Trainee Table of Contents Chapter 35 The Ethics of Mentoring in Dermatology – 359 Chapter 36 The Ethics of Service as a Department Chairperson and/or Residency Director – 369 Chapter 37 Ethical Issues in the Dermatology Match – 383 Chapter 38 Dermatoethical Challenges and Education Involving Medical Students & Dermatology Residents: Opportunities at the Bedside – 401 Chapter 39 The Cost of Free Cosmetics: When Training and Capitalism Collide – 413

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The Ethics of Mentoring in Dermatology David William Brodell, Lindsey Brodell Dolohanty, Robert Thomas Brodell, and Jane M. Grant-Kels Contents Special Considerations – 362 References – 366

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_35

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nnLearning Objectives 1. To review the complex interactions between mentor and mentee highlighting ethical principles that guide actions. 2. To describe characteristics of successful mentors. 3. To review scenarios that highlight ethical problems that can occur in the mentor-mentee relationship.

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Mentoring has been a well-established way of cultivating the next generation since the time of Socrates, Plato and Aristotle. It is an invaluable part of medical training both for the mentor and mentee but is not unique to medicine, as it is employed regularly in many fields, including the business world. Formal and informal mentoring occurs in every teaching venue and is rooted in a desire to educate and advise students, residents, and young faculty to help ensure their future success. It is an endeavor guided by specific professional codes including the Hippocratic Oath, the Oath of Maimonides, the Physician’s Oath of the World Medical Association (Declaration of Geneva), and the American Medical Association’s Code of Ethics [1–4]. Mentoring is a privilege which serves the individuals in the relationship as well as the larger community [5]. While the principles of beneficence, non-­ maleficence, autonomy and distributive justice are often applied in the context of the doctorpatient relationship, they can be also applied to the mentor-mentee relationship [6]. Autonomy for the mentee requires that the mentee has the right to terminate the mentor-­mentee relationship. The mentor has the moral obligation to consider the welfare the mentee (beneficence) and to avoid knowingly doing him or her harm (non-maleficence). Similarly, justice in the mentorship realm involves treating mentees with fairness and respect (7 Box 35.1).  

Box 35.1 Guiding Ethical Principles of the Mentor Beneficence: ensure mentee’s interests come first, make time for the mentee, advocate for the mentee Non-maleficence: do no harm to mentee

Autonomy: increase mentee’s autonomy in a graded fashion Fidelity: be loyal to the mentee Justice: treat the mentee with fairness and respect Transparency: be open and candid with the mentee Truthfulness: be honest and maintain integrity with the mentee Boundaries: keep sexual and other personal boundaries with the mentee Privacy: maintain confidentiality with the mentee Competence: develop skills of an effective mentor Acceptance: accept mentee and not create a replica of the mentor

Of course, the perfect mentor, imbued with all of these ethical qualities, does not exist. In fact, there are specific qualities and components intrinsic to mentoring that can lead to dysfunctional mentorship (See 7 Box 35.2).  

Box 35.2 Qualities and Components of Mentorship that Heighten the Risk for Ethical Lapses and Dysfunctional Mentorships (7 APA.­org)  

Prolonged duration producing mentor compassion fatigue Mentorships without interpersonal “chemistry” [7] Power differential Multiple overlapping professional roles of the mentor that detract from time and attention available for the mentee Mismatch of mentor skillset and mentee need Mentor who does not have time to dedicate to the mentee [8] Desire on part of mentor to create a “mini-me” or create a mentee with the same values and goals as the mentor Abuse of the mentee with jobs that enhance the mentor’s career more than the mentee’s [8]

While mentoring can involve a single session at a point in time, these relationships often

361 The Ethics of Mentoring in Dermatology

assume a long duration and in some cases they exist in perpetuity. Since up to 50% of marriages fail between people who love each other, it is not difficult to recognize the potential for miscommunications or misunderstandings in the sometimes longstanding, complex relationships established through mentoring. Because of the power differential between the mentor and mentee, a personality conflict can potentially harm the mentee. Formal mentoring systems that pair individuals randomly may not promote the “chemistry” more common when mentors and mentees share a research interest, field of study, or other common bond. Mentors often have overlapping roles including responsibilities as a department chair or program director, clinician, researcher, and writer of letters of recommendation. This can lead to poor, misdirected or inadequate guidance for the mentee if the mentor “hat” is not firmly in place during mentor-mentee meetings. Finally, all mentors are not created equally. These relationships often are not sustainable due to incompatibility or not helpful due to differences in interests and goals. In these scenarios, they should be dissolved without negative consequences or feelings, and another more appropriate mentor found for the mentee. It is best if both the mentor and mentee agree to this formal relationship [9]. Having accepted the responsibility to guide a mentee, the mentor must accept certain ethical responsibilities (See 7 Box 35.3).  

Box 35.3  Ethical Responsibilities of the Mentor [10] Model ethical behavior Be a trusted confidant Embrace a combination of strategy and goals Listen Openly, honestly, candidly and constructively communicate Meet often, avoid holding mentee hostage to a busy work schedule Set boundaries and a schedule with goals

Accept the mentee; withhold judgment and listen and provide advice Guide the mentee to his/her own conclusions rather than “telling” Celebrate the success of your mentee Avoid mentee exploitation by assigning work or low-value projects Promote mentee’s career and actively advocate for the mentee Know when to walk away and “graduate” the mentee Work to the right of the “TransactionalTransformational” continuum for optimal mentoring [11] Develop a strong working alliance Consider appropriate level of social support

Mentors must know that their relationship with the mentee is primarily designed to benefit the mentee. Thus, the ethical behavior of the mentor should not reflect a hidden/silent agenda. Rather, a mentor should engender trust by demonstrating fairness, respect, responsibility, and integrity, and never behaving in an unscrupulous manner. General Norman Schwartzkopf emphasized the importance of ethical responsibility when he said, “Mentoring is a combination of strategy and character. If you must be without one, be without strategy” [12]. Though mentors often like to pontificate, good mentors are first and foremost good listeners. The mentee should not feel obligated to become a clone of the mentor or strive to be what the mentor wishes he/she would have been. The critical question for the mentee is “Where do I wish to be in 1  year, 5  years, 10 years, or at the end of my career?” Advisors/ supervisors/faculty sponsors have a responsibility to provide the best mentoring, which requires thoughtful development of a skill set along the Mentoring Relationship Continuum [13]. This approach requires mentors to develop life-long relationships that help the mentee to achieve their goals rather than focusing on the quality of the relationship at a point in time [13]. There are many types of leadership and many ways to inspire achievement. Many successful mentors rely on

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blended transactional approaches, which maintain the normal flow of operations, and transformational approaches, which involve developing strategies that go beyond day-to-­ day operations to get to the “next level” of success [14]. The best mentors are transformational rather than transactional in their approach. They develop strong working alliances and freely provide emotional support. For example, a mentor who stresses the importance of getting a project done on time has a transactional approach. A transformational mentor focuses on team-building, motivation and collaboration to get the project done in a manner that contributes to personal and professional growth.

not the avenue to seek personal (such as marital or child rearing) or psychiatric counseling. The benefits to the mentor are largely rooted in the personal satisfaction that comes from supporting the development of others. Of course, unpredictable benefits can relate to future collaborations and even flipping the mentor-mentee roles. For instance, the mentee may guide the mentor to more efficiently use a new software application in a collaborative research project. Box 35.4 Mentorship agreement tem­ plate, University of Washington Goals

Special Considerations

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1. Should there be written informed consent or contract agreed upon by the mentee and mentor? Some experts in mentoring have suggested that written information should be provided to the mentee regarding expectations, time commitment on her part, potential benefits, and risks [15]. 7 Box 35.4 contains an example of a mentor-­mentee 2. contract from the University of Washington. This contract properly sets expectations for the mentee as well as mentor. There are many potential scenarios demonstrating problematic interactions in a mentor-­ mentee relationship including but not limited to mentees who: (1) fail to complete a publishable project requested by the mentor, (2) do not obtain a position in a residency or fellowship match despite following the mentor’s advice; and (3) pursue an alternative career than that which the mentor has recommended. The benefits of mentoring to the mentee are widely variable, but could include gaining an understanding of career options, gaining access to others in the field who the mentor can contact on the mentee’s behalf, developing a strategy to achieve success, learning time-management skills, advice regarding dealing with problematic interpersonal relationships at work, and providing emotional support. This is

Steps to achieving goals as stated above Meeting frequency Confidentiality Plan for evaluating relationship effectiveness Relationship termination clause Duration

How does the mentee or the Department Chair deal with an underperforming or ineffective mentor? High-­functioning mentors succeed through “the habitual and judicious use of communication, knowledge, technical skills, clinical reasoning, emotions, values, and reflection in daily practice for the benefit of the individual and the community service” [8]. Some mentors may intermittently fail to meet these extraordinary expectations because of technical or emotional issues. Others may lack the drive, virtues, traits or skills to be a successful mentor [16]. A series of unsuccessful mentoring experiences should lead to removal the mentor from this role. Perhaps the mentor has a toxic personality or is unable to dedicate the time needed to his or her mentees. W. Brad Johnson developed the “Triangular Model of Mentor Competence” to highlight the three fundamental components that contribute to proficiency: Virtues, Abilities,

363 The Ethics of Mentoring in Dermatology

ABILITIES

COMPETENTCIES

Cognitive

Student development

Intellectual skill

Relational phases

Cognitive complexity

Relationship structure

Emotional

Mentor functions

Emotional balance

Boundary maintenance

Personality adjustment Relational Capacity for intimacy

Recognition of dysfunction Mentor Competence (Integrated Deep Structure)

Cross-gender skills Cross-race skills

Communication skill

Respect for autonomy Self-awareness

VIRTUES Integrity Caring Prudence ..      Fig. 35.1  The triangular model of mentor competence. (Johnson [16]. Used with permission from Ethics and Behavior)

and Competencies [17] (See . Fig.  35.1). A mentor should take note of these competencies and actively strive to improve their skillset. Most institutions incorporate faculty development programs, which should include the promotion of mentoring skills [18]. 3. Are there mentoring pitfalls related to diversity? Do the best mentors necessarily share culture, race, sexual orientation, or other features with their mentee? What if the mentee wishes to have a mentor who looks like him/her? Allowing some flexibility in pairing mentors and mentees is a good thing. If a mentee feels more comfortable with a specific mentor based on any of a variety of factors, it seems prudent to err on the side of meeting the mentee’s needs when this is possible. 4. Why does a mentee select a specific mentor? It is vital that the values and interests of  

the mentor and mentee align. Some organizations use a “speed-dating” approach with mini-interviews to help m ­ entors and mentees make this assessment [19]. If the choice of mentor is solely designed to pad the mentee’s curriculum vitae or if it is simply based on the mentor’s title rather than an effort to seek guidance and a role model, the relationship may never achieve its intended goals. 5. Why does a mentor choose to mentor? Besides the sheer pleasure of the relationship and helping someone junior, there are secondary gains for the mentor including developing an ally for the future, assistance with research and publications, establishing a future legacy, and expanding one’s sphere of influence. Being transparent about these benefits minimizes the risk that they will interfere with an effective mentor-mentee relationship.

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>>Points of Emphasis



1. The ethical principles guidingthe mentor-mentee relationship include autonomy, beneficence, non-maleficence, loyalty, justice, transparency, honesty, boundary-keeping, confidentiality, competency and acceptance. 2. The qualities and components of mentorship which heighten the risk for ethi-

cal quandaries include prolonged duration, lack of chemistry, power differential, unclear roles, lack of time, conflict of interest and ulterior motives. 3. Effective strategies can be deployed in particular circumstances to help avoid ethical traps related to m ­ entoring.

Case Scenarios

Case 1 A mentor has developed a relationship with a mentee over the first 3  years of medical school and the experience has been very successful for both. The mentee decides to apply to dermatology programs via the National Residency Matching Program (NRMP). The mentor believes the medical student’s grades, US Medical Licensing Examination (USMLE) scores, and lack of publications make it unlikely that a match will be successful in the highly competitive field of dermatology. A long discussion revealed few special attributes that could “sell” this applicant except that the he is a hard worker and sincerely wants to become a dermatologist. The medical student asks his mentor for a “strong” letter of recommendation.

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Case 2 A male professor has a very successful professional life but a very unhappy marriage. A female medical student mentee during a monthly mentorship meeting with him asks for an explanation as to why he has been so obviously unhappy over several months. She gives her mentor an affectionate hug while asking if there is anything she can do to “help?” Case 3 A mentee from an under-represented group has steadily improved his performance in medical school. In third year, he received honor grades in all clinical courses. USMLE board scores are average, and no publications have been produced. The mentee asks for special consideration

in writing a “strong” letter of recommendation in view of his educational background in a poorly performing public high school and a community college close to home. The mentee points out that extra effort has been required to “catch up” to other medical students with educational benefits not previously available to him. Case 4 A chairperson was assigned a junior faculty person as mentee. A very successful relationship developed over several years for the mentee, and it proved to be quite gratifying for the mentor who took great pride in his protege. A senior dermatologist who was the department’s cutaneous T-cell lymphoma expert has just retired. The mentor becomes frustrated when his junior faculty mentee is unwilling to accept the role of lead dermatologist in this multi-specialty lymphoma clinic. He blurted, “After all I have done for you, this is the least you could do to help your department.” Case 5 A mentor is frustrated because of the time required to mentor four medical students interested in dermatology and three dermatology residents who are interested in her subspecialty area: dermatopathology. Each is working on a research project which requires meetings to generate ideas and time to edit the manuscripts. Email ­ guidance for these seven mentees is requiring over an hour of work each day. The mentor is ready to quit this endeavor and devote herself exclusively to patient care and her own research projects.

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Case 6 A mentor and mentee develop a strong relationship over 3  years of medical school. The mentee volunteers that the mentor’s dermatology program has always been and is now his favorite and first choice dermatology residency training opportunity. The mentor likes medical students who want to be in his program and

encourages the faculty to rank this applicant in a high position to match on the program’s match list. On the day of the match, the mentor learned his mentee has matched at another dermatology program indicating that the mentee did not rank the mentor’s program as his first choice despite his attestations that this would be the case.

Analysis of Case Scenarios

Case 1 It is an act of beneficence for the mentor to fairly represent to the mentee his chances for obtaining a dermatology residency through the match. Honesty and transparency demand that the mentor explain to the mentee the realities of the competitive match program and guide him into another specialty, if warranted. Training in general medicine or pediatrics does not preclude the possibility of later applying to dermatology. Alternatively, pursuing a research fellowship would afford the applicant an opportunity to mature socially and develop a stronger record of publications that could bolster his/her application to dermatology the following year. The mentor should state that he/ she will present the strong points of the mentee applicant in a letter, but that the recommendation will be fair and balanced. If the mentor believes that it is not possible to write a good letter of recommendation, he/she should decline the letter of recommendation request. Case 2 It is inappropriate for this or any mentor to discuss intimate details of his personal life with a mentee. There are other avenues available for psychological or legal support that are much more suitable. If this were simply an awkward exchange in an awkward moment during a formal mentoring relationship, it is possible that this discussion can be avoided and no harm will come to either party. It could be a teaching moment to highlight the importance of avoiding boundary violations. However, one cannot

deny the potential impact of the gender-based power dynamic in this scenario [20]. Although the mentee’s “hug” could be innocent, it may be perceived as inappropriate in the current societal climate. Ultimately, the mentor-mentee relationship may need to be terminated if clear expectations related to boundaries cannot be maintained. The mentee could be guided to find another faculty member as her mentor. Case 3 This case represents the ethical principle of justice. A person whose life required him to take a more tortuous and difficult road to obtain his current position should get some “credit” for this accomplishment. Hard work, tenacity, determination, and teamwork may all have been exhibited by this mentee. If so, the mentee deserves the mentor’s respect and strong support. Diversity has also been shown to benefit educational programs in predictable and often very unpredictable ways. It is well-known that underrepresented medical faculty face unique challenges, and there are many disparities in medicine [21, 22]. In the field of dermatology there is a clear need for more diversity of our trainees and future dermatologists [23]. For these reasons, the mentor should provide support to the mentee by writing a letter of recommendation that highlights his special circumstances. However, fairness dictates that the mentor provide all other applicants with the time and consideration necessary to identify special characteristics and circumstances that might allow them to receive special consideration.

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Case 4 Mentor-mentee relationships are not “one-­way” streets in which advice, knowledge, and benefits flow directly only to the mentee. Mentors often attain quantifiable and qualitative goals through teamwork and mutual growth [24]. However, unlike mentees, mentors should not enter these relationships with specific expectations to garner benefits for themselves given the power dynamics at play. The mentor’s “job” in this scenario is to present the advantages and disadvantages of taking on the new challenge of directing and participating in a multispecialty lymphoma clinic. The mentee should not be forced to pursue a subspecialty. In fact, the ability of the mentee to refuse the request of her mentor may be viewed as a successful sign of the mentor having helped the mentee achieve independence and professional autonomy. A reasoned, transparent discussion with the mentee will probably reveal the reasons the mentee is resisting the recommended position. Case 5

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In this scenario, the mentor may need a mentor. Adam Grant, Chair of the Wharton School of Business, in his book, Give and Take, presents evidence that the secret of hyper-successful individuals is “helping others” [25]. Nonetheless, mentees require time and commitment. Ways to reduce the time commitment to multiple mentees could include group projects and group discussions related to skill sets required for the success of each of the mentee’s projects. Additionally, developing a system to share mentees within the department could allow for the mentor to feel less pressure to help a large number of individuals. Accepting too many mentees,

Conflicts of Interest  The authors report no

relevant conflicts of interest.

References 1. Parsa-Parsi RW.  The revised declaration of Geneva: a modern-day physician’s pledge. JAMA. 2017;318(20):1971–2.

despite good intentions, can lead to burnout and poor mentoring. Self-reflection and acquiring the ability to appropriately say “no” are skills that need to be developed for continued success of this mentor. Case 6 This case rings true for many mentors who have been disappointed by mentees who may not have been honest and forthcoming with them. First, the mentor should have made the decision whether to rank the applicant “to match” based on the selection committee’s opinion of the applicant, regardless of the candidates expression of a “first choice” residency. There are immense pressures that come to bear on a mentee in the highly competitive dermatology residency application process. Nevertheless, a lie is unacceptable. It would have been more appropriate for the applicant to state that the mentor’s program was “one of his/her top choices” rather than stating unequivocally and dishonestly that it was his/her number one choice. The NRMP Code of Conduct allows program directors, interviewers and applicants to express interest in each other. Furthermore, applicants are allowed to change their minds based on information they may receive about programs, family influences, or just changes of heart. An open, transparent discussion of the circumstances that led the mentee to change his mind without the mentor expressing anger or frustration will likely clarify the situation. If the mentee truly lied in an attempt to “game the system,” he/she needs to be educated on professionalism and integrity before graduation. Ethics should be taught informally every time there is a teaching moment.

2. Hulkower R.  The history of the hippocratic oath: outdated, inauthentic, and yet still relevant. Einstein J Biol Med. 2016;25(1):1–44. 3. Rosner F. The physician’s prayer attributed to Moses Maimonides. Bull Hist Med. 1967;41(5):440–54. 4. Brotherton S, Kao A, Crigger BJ. Professing the values of medicine: the modernized AMA code of medical ethics. JAMA. 2016;316(10):1041–2.

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5. Weber KT.  A treasure trove of talent. Am J Med Sci. 2011;341(4):263–5. https://doi.org/10.1097/ MAJ.0b013e3182113424. PubMed PMID: 21372661. 6. Beauchamp TL, Childress JF. Principles of biomedical ethics. 7th ed. New  York: Oxford University Press; 2012. 7. Jackson VA, Palepu A, Szalacha L, Caswell C. “Having the right chemistry”: a qualitative study of mentoring in academic medicine. Acad Med. 2003;78(3):328–34. 8. Chopra V, Edelson DP, Saint S. Mentorship malpractice. JAMA. 2016;315(14):1453–4. 9. Maloney ME.  Ethical mentorship: the dilemma of success or failure. Clin Dermatol. 2012;30:210–5. 10. Stewart J.  Transformational leadership: an evolving concept examined through the works of Burns, Bass, Avolio, and Leithwood. Can J Educ Adm Policy. 2006;54:1–29. 11. Lee G.  With Schwarzkopf: life lessons of the bear. Washington, D.C.: Smithsonian Books ASIN; 2015. p. B01FIWJH62. 12. Johnson WB.  Mentoring in psychology education and training: a mentoring relationship continuum model. In: Johnson WB, Kaslow NJ, editors. Oxford library of psychology. The Oxford handbook of education and training in professional psychology. New York: Oxford University Press; 2014. p. 272–90. 13. Lee SP, McGee R, Pfund C, Branchaw J. “Mentoring up”: learning to manage your mentoring relationships. In: Wright G, editor. The mentoring continuum  – from graduate school through tenure. Syracuse: The Graduate School Press of Syracuse University; 2015. 14. Huskins WC, Silet CK.  Identifying and aligning expectations in a mentoring relationship. Clin Transl Sci. 2011;4(6):439–47. 15. Epstein R, Hundert E. Defining and assessing professional competence. JAMA. 2002;287(2):226–35.

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16. Johnson WB. A framework for conceptualizing competence to mentor. Ethics Behav. 2003;13:127–51. Available at https://pdfs.­semanticscholar.­org/1077/ e1d17d2bc0c7773e0e80430243aa31716388.­p df. Accessed 20 Feb 2019. 17. Ramirez JJ. The intentional mentor: effective mentorship of undergraduate science students. J Undergrad Neurosci Educ. 2012;11(1):A55–63. Epub. 18. Caine AD, Schwartzman J, Kunac A. “Speed dating for mentors” a novel approach to mentor-­ mentee pairing in surgical residency. J Surg Res. 2017;214: 57–61. 19. Levine RB, Mechaber HF, Reddy ST, Cayea D, Harrison RA. “A good career choice for women”: female medical students’ mentoring experiences: a multi-institutional qualitative study. Acad Med. 2013;88(4):527–34. 20. Kaplan SE, Raj A, Carr PL, Terrin N, Breeze JL, Freund KM. Race/ethnicity and success in academic medicine: findings from a longitudinal multi-­ institutional study. Acad Med. 2018;93(4):616–22. 21. Beech BM, Calles-Escandon J, Hairston KG, Langdon SE, Latham-Sadler BA, Bell RA. Mentoring programs for underrepresented minority faculty in academic medical centers: a systematic review of the literature. Acad Med. 2013;88(4):541–9. 22. Pritchett EN, Pandya AG, Ferguson NN, Hu S, Ortega-Loayza AG, Lim HW. Diversity in dermatology: roadmap for improvement. J Am Acad Dermatol. 2018;79(2):337–41. 23. Bauça JM.  Reflections on the mentor-mentee relationship: a symbiosis. EJIFCC. 2018;29(3):230–3, eCollection 2018 Nov. PubMed PMID: 30479610. 24. Grant A. Give and take: a revolutionary approach to success. London: Weidenfeld & Nicolson; 2014. 25. Grant, Adam. Give and Take: Why Helping Others Drives Our Success. A Penguin Book. 2013.

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The Ethics of Service as a Department Chairperson or Residency Director Robert Thomas Brodell, Jeremy D. Jackson, and  Jane M. Grant-­Kels Contents Ethics and the Department Chairperson – 370  eneficence – 370 B Autonomy – 370 Non-maleficence – 370 Justice – 370 Dignity – 371 Truthfulness and Transparency – 371 Paternalism/Maternalism – 371 Professionalism – 371 Ethical Issues of a Residency Program Director – 377

References – 380

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_36

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nnLearning Objectives 1. Develop insights into ethical challenges facing dermatology chairpersons and residency program directors. 2. Identify strategies for resolving ethical issues arising within dermatology programs.

Ethics and the Department Chairperson

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A chairperson is the primary intermediary between university leadership and the department’s faculty. The most important characteristic of great chairpersons is that they care for their faculty and departments’ success more than their own. Chairpersons have the opportunity to impact the future of their faculty through mentoring, role modeling, establishing working conditions, instituting equitable and incentivizing payment mechanisms, and even promoting, hiring and firing faculty. Chairpersons are servant leaders who have the responsibility to effectively manage their department, contributing to the success of the individual faculty as well as the department and the university. It is their responsibility to establish a culture that values fairness and integrity, rewards effective and efficient work, and develops a strategy to reach goals through a combination of parental instincts and mission-­ driven zeal. Simultaneously, it is important to understand that chairs are human beings, dealing with their own frustrations as they balance their expectations with the realities of a job that can easily consume 80-plus hours a week; the time commitment and effort required helps explain the 10–15% turnover of chairpersons each year [1]. The ethical problems frequently encountered by chairs often involve balancing the needs of the university, department, residency, individual faculty, and one’s personal and family needs [2] (See 7 Box 36.1). A successful chairperson can only handle this balancing act and demands if their actions are grounded in ethical beliefs and sincere concern for their faculty and staff. The following ethical ideals are required of a model and ethical chair:  

Beneficence Putting the patient’s best interests ahead of the physician’s transitions easily to the servant leader role of a chairperson who ideally obtains joy from the successes of his or her faculty, residents, medical students, staff, and ultimately the university as a whole. The role is analogous to a selfless parent.

Autonomy Interests of each faculty member, resident, medical student and staff should be considered when making departmental decisions. Transparency requires that the chairperson educate all members of the department regarding the issues and their options; chairpersons should not presume they know what is best for their teams. When members of the department become aware of their options, they realize they play a role and therefore have some autonomy; autonomy and control generally result in happier faculty and staff. In contrast, dictatorial rule is often met with resistance and resentment.

Non-maleficence A chairperson whose primary goals are related to his or her own monetary success or personal aggrandizement will usually not survive long as a chairperson. They will often trample the needs of others as they focus on themselves. This is not only ethically wrong, it is a damaging to the cultural fabric of the department. One hurtful comment, careless inattention to a faculty member’s needs, or damaging action will take scores of kindnesses to overcome.

Justice An effective chairperson must strive to avoid the perception of showing favoritism. Fairness dictates that everyone, including the chair, fol-

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lows the same rules and that decisions are based upon facts that are impartially adjudicated.

Dignity Just like patients, faculty, students and staff deserve to be treated with dignity and respect. Praise should be delivered publicly and shortcomings discussed privately. Individuals who report to the chairperson should be treated with the same respect as the chairperson would like to be treated.

Truthfulness and Transparency For a chairperson, truthfulness is the ethical foundation of leadership. Transparency is a tool that works more effectively than keeping “cards close to the vest.” Leading a department should not mimic a poker game. There are obviously exceptions that involve the need for discretion. However, the faculty and staff must trust the chairperson, which will only be earned by a history of candor and openness.

Paternalism/Maternalism There can be fine line between paternalism/ maternalism and infantilizing staff and faculty. Additionally, authoritarianism can also be fraught with ethical consequences. This tightrope is not easy to walk but staff, students, residents and faculty need to feel cared for while simultaneously demonstrating the willingness to follow authoritarian decrees. Treating department members with respect and even affection while also giving them a voice or decision making role in the department requires a special skill.

Professionalism Chairpersons need to demonstrate the highest level of professionalism displaying the attitudes, behaviors, and characteristics that

engender trust in physicians. The chairperson’s actions are part of the “hidden curriculum” that can be more powerful than words in molding residents and young faculty who must also be professional in their activities. The same honesty, integrity, and codes of ethics and behavior that regulate a physician’s professional relationships with patients are also in play in the physician’s actions as a leader [3]. The ethical issues that affect chairs can be summarized into a number of categories as summarized in 7 Box 36.1.  

Box 36.1 Ethical Responsibilities Balanced by the Chairperson 55 To the University (i) Promote mission (ii) Maintain margin (iii) Attain educational, patient care and research goals 55 To the Department (i) Establish a culture that promotes success (ii) Develop a shared vision and effective strategy (iii) Recruit and retain faculty (iv) Promote diversity (v) Lead and develop faculty consensus (vi) Adapt to changing health care paradigms (vii) Manage a business, research unit, and educational programs 55 To the Faculty Member (i) Lead by example (role model) (ii) Mentor for success (iii) Manage promotion and tenure (iv) Assist in networking 55 Issues Related to Human Nature (i) Recognize and eliminate boundary violations (ii) Deal sensitively with physician impairment (Chair, Faculty or Resident) [4, 5] (iii) Increase access to medical dermatology in the era of cosmetics [6–8]

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(iv) Deal with ignorance and incompetence including senility in senior faculty [5] (v) Deal with ethical insensitivity (combative or abusive faculty) [9] (vi) Eradicate diversity/cultural insensitivity [10–13] 55 Financial Issues (i) Maintain departmental solvency in clinical and research areas (ii) Consider issues related to consumerism, office dispensing, and the business of medicine [14–18] (iii) Maintain equal access to appointments for underinsured patients [19, 20] (iv) Appropriately compensate lower income generating faculty (v) Compensate faculty fairly: Departmental capitalism or socialism (vi) Maintain ethical coding [21] (i) University regulations may limit courtesy care (vii) Set levels of NP and PA vs physician staffing [22, 23] (viii) Deal with faculty members who lose grant support (ix) Eradicate the use of university resources for private purposes or consulting (x) Deal with faculty members whose national teaching and committee work inhibits their ability to hit RVU targets (xi) Decide if hospital-based dermatology clinics are appropriate (xii) Treat women and minorities on faculty fairly [24] (xiii) Perform inpatient consultations even when unprofitable [25–28] (xiv) Deal with and educate clinicians who want university dermatopathology to participate in “client billing” [29]

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(xv) Manage ethics in research [30–35] (xvi) Manage ethics in teledermatology [36, 37] (xvii) Deal ethically with patient sampling in academic medicine [38– 41] Town and gown issues (i) Manage requirements for affiliate faculty titles (ii) Train residents who may become faculty competition (iii) Seek donations from graduates or community dermatologists (iv) Consider ethics of private dermatologists using their academic title to advertise [42]. Establishing a Departmental Culture (i) Employ technological advances to minimize burnout (ii) Employ appropriate staffing to minimize burnout (iii) Avoid the appearance of favoritism (iv) Maintain transparency (v) Deal with dissension among faculty and staff (vi) Mentor and fairly promote faculty [43] Bureaucratic Issues (i) Manage HIPPA (ii) Understand and manage MACRA and MIPS (iii) Deal with community physicians –– Avoid gaming system, such as altering a diagnosis to obtain insurance coverage [2] Conflict of Interest (i) Interact appropriately with pharmaceutical companies [44, 45] (ii) Perform clinical trials with pharmaceutical company support (iii) Balance education and ties with pharmaceutical companies

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Case Scenarios

Case 1 A 53-year-old patient makes an appointment with the Chairperson at a university dermatology clinic. He notes that he had a spot on his nose that bled six months ago that was “ignored” when he showed it to his private dermatologist. The lesion enlarged and one week ago it was biopsied by the same community dermatologist. The pathology demonstrated basal cell carcinoma. The patient believes he was mismanaged by the community physician and is litigious. Case 2 A 55-year-old solo, private practice dermatologist has been a clinical instructor at a nearby university dermatology program for 25  years. He has never been involved in teaching medical students or residents. Several months previously he decided to hire for his practice a board-certified dermatopathologist to provide this service for his patients; he subsequently stopped referring to the university dermatopathology laboratory. The community physician was recently notified that he is losing his faculty appointment; this news annoys him because of “all he has done for the university for all of these years.” Case 3 A gifted, well-liked member of the faculty has not completed the steps required for promotion to Associate Professor of Dermatology. This individual enjoys teaching and was chosen by the residents as “teacher of the year” three years ago. He sees more patients and earns more income for the department and for himself (incentive plan) than most other faculty members, but he has produced no publications in peer-reviewed journals. He is not working on any research projects with residents or medical students because he “does not like research.” With the support of other faculty members, he asks for the chairperson’s

support to appeal this “injustice” to the Promotion and Tenure committee. Case 4 A 34-year-old junior faculty member has 450 incomplete electronic health record charts with 400 of these charts delinquent for greater than one week. This pattern of incomplete records first occurred one month previously when he was working on editing a book chapter with a fixed looming deadline. The faculty member is an all-star performer who is often the first to volunteer for teaching assignments, hospital consultation coverage, and has a winning bedside manner. The chairperson is considering escalating the problem to the Faculty Affairs department since pointing out the issue with a series of emails to the junior faculty has not led to any improvement. Case 5 A faculty member has demonstrated a series of errors in clinical judgement. Most seem to be related to rushing at the end of afternoon clinic sessions since she “must be done at 5:00 pm.” The chairperson discusses these concerns with her, and she becomes angry and resigns. It is public knowledge that the individual is being interviewed for a job with the largest private group in the city. The chairperson decides to call a senior member of the group to make sure they are aware of the issues that led to her resignation. Case 6 A nurse believes she noticed alcohol on the breath of a 65-year-old physician during an afternoon clinic session. He demonstrated unusual jocularity and failed to sign any of the orders entered into charts during that afternoon. This led to a number of phone calls from pharmacies where patients were attempting to pick up their prescriptions.

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Analysis of Case Scenarios

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Case 1: The Importance of the Trusted Collegial Chair

Case 2: Communication and Fairness to Prevent Chair Town-Gown Dilemmas

The original Hippocratic oath was an attempt to codify professionalism [46]. It contained a pledge of collegiality focused on one’s teachers which could easily be extended to all colleagues [47]. A consultant’s role is to provide an honest opinion and render advice in the best interest of the patient. Implicit in this role is the hope of strengthening the doctor-patient relationship and taking care not to undermine that bond. While the frustrated patient may blame his previous physician for the severity of his present disease or unresponsiveness, poor outcomes are rarely the result of negligence of incompetence. Unfortunate outcomes are more commonly related to the presentation of the disease, severity of the disease, or non-adherence to prescribed treatment. While being diligent about reviewing the patient’s past history and carefully planning appropriate next steps, there is little to gain by undermining an existing therapeutic relationship between the patient and the referring physician. Simply acknowledging that the patient’s condition is challenging usually suffices to validate the other physician’s efforts and maintain a professional relationship with the community physician. This course of action is pursued for many reasons beyond protecting future referrals. Community physicians should be made to feel that they can refer their patients to a safe environment where their efforts are respected. This attitude enhances care of the community of patients and enhances the department both educationally with a source of teaching cases as well as fiscally. It is also impossible to know what a lesion looked like at an earlier presentation. Many evolving skin cancers can present in a very subtle manner making them challenging to diagnose. Educating the patient on this fact in this scenario might prove reassuring to the patient.

The chair has the authority to remove any faculty from the staff if that person is not contributing to the department. It is ethically appropriate to expect community faculty to contribute cases to support the training of residents, attend grand rounds, and even teach. However, it would be inappropriate to let the chairperson’s frustration over lost departmental referrals potentially lead to a town-gown uproar. Furthermore, there are some ethical constraints which impact the chairperson in this scenario. The decision to terminate a community physician’s academic title needs to be fair (justice), based on guidelines established by the department. The chairperson must treat all community faculty in the same manner. At the outset, there should be some communication with community physicians regarding what is required of them to maintain academic appointments. These requirements might include attendance at grand rounds, referring interesting cases to grand rounds, teaching and mentoring, and even the encouragement of referrals in an effort to support resident and fellow educational material. At the same time, the university services (dermatopathology, medical dermatology, and surgical dermatology) must be top-notch with outstanding, accurate and timely communication to the referring dermatologists. In this scenario, the community dermatologist has hired a board-­ certified dermatopathologist and obviously has a financial reason to refer his specimens to his in-house dermatopathologist. Although the patient’s best interests should come first, in this case one has to assume the dermatopathologist that was hired is well trained. The chairperson cannot accuse this dermatologist of being motivated by greed as there are many reasons for a practice to want their own in-house dermatopathology. Clinical-pathologic correlation and speed of

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receiving reports are reasons besides fiscal issues that often are cited for this kind of hire. Additionally, threats to remove an academic title if specimens are not contributed to the academic lab could also be interpreted as a reflection of greed on the part of the university. Of note, “client billing” arrangements in which clinical dermatologists are paid a proportion of the pathology collections even though they perform no part of the work are considered unethical by the American Medical Association [48]. A positive approach would be to determine how the community dermatologist would like to play an active role in the dermatology department. Options might include sending patients to monthly grand rounds conferences, referring appropriate patients to clinical trials, teaching at some resident conferences several times a year, providing scheduled supervision of a resident continuity clinic, service at an indigent clinic, allowing resident rotations in the private practice setting if the setting offers a unique educational experience, mentoring medical students and residents, or research collaboration with medical students, residents, or academic faculty to produce peer-reviewed publications. Ultimately, there must be some genuine ongoing commitment to the educational or research goals of the university to maintain an academic title. Case 3: The Role of Mentoring Faculty: The Faculty’s Success is the Chair’s Success It is the responsibility of the department chair to promote teamwork and a sense of well-being among the faculty. When faculty quit academics because of perceived unfairness of the promotion process it can have a very negative impact on the success of a department. There are some faculty who do vital work for the department that may not be viewed by the university as valuable for promotion. This was especially true in the past where the “publish or perish” mantra was emphasized in the promotion process. Most universities now have systems for validating

contributions to the university that recognize the importance of a diverse faculty and the role of clinician-educators. Still, the requirements are rigorous and require planning years in advance of applying for promotion. The chairperson has a significant role in mentoring faculty or devising a system that can provide proper mentoring. Most universities offer varied tracks some of which reflect the importance of education and clinical work versus basis science research and publications. However, the individual who does not want to commit to the investment of time, energy, and creative talent needed to care for specialized dermatologic problems, mentor medical students, review articles submitted to journals, teach at the bedside, provide didactic lectures of sufficient quality and quantity, and establish a local, regional, national, and perhaps international reputation may not belong at the university medical center. On the other hand, the chairperson bears some level of responsibility for letting this situation evolve without the faculty member clearly knowing he was not meeting promotion requirements. In fact, the chairperson has an ethical responsibility to focus on the success of individual faculty members with respect to personal goals as much as the chairperson focuses on department and university success. In this scenario, the chairperson does not have the authority to grant an exception to wellestablished rules that guide the promotion process. If an exception were to be made for one individual, this could destroy morale and trust in the system when another individual believes her or she deserves an exception. Ultimately, the key to success is fairness, consistency, and integrity of process [49, 50]. Faculty work attitudes, satisfaction, and behavior are all heavily influenced by the perception of fairness in the promotion process [51]. In addition, procedural justice is critical to the faculty member’s reaction to the decision, especially when the outcome is not in his or her favor [5].

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Case 4: Dealing with Faculty Who Have “Monosymptomatic” Deficiencies A series of emails is not an adequate level of communication to allow the chairperson to understand the problem at hand. This is an issue of professionalism and needs to be addressed. It is also an example of the chairperson being required to walk that fine line between paternalism/maternalism and authoritarianism. A face-to-face discussion to better understand the factors contributing to the delinquent charts may provide insight to why this otherwise highlevel performer is deficient in this responsibility. Does the faculty member have an adequate scribe, medical assistant, or nursing s­ upport to deal with the burdens of the electronic medical record? Does the faculty have adequate administrative time to complete clinical charts yet still be productive in academic areas such as teaching and publications? Are there personal or psychiatric issues contributing to this outcome? This crisis presents an opportunity for the chairperson to emphasize the positives this faculty member brings to the department, evaluate areas where the department can be more supportive of the faculty, but also mentor a young faculty member on the importance of completing professional responsibilities. This communication is likely to improve the situation and preclude any need to escalate the issue to Faculty Affairs. Case 5: Handling the Unsuccessful or Incompetent Faculty Member

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Department chairpersons have a responsibility to the community to never allow an incompetent colleague to evaluate and treat patients [52]. This is the ethical construct known as the primacy of patient welfare [53]. However, as a highly respected member of the dermatology community whose opinions carry great weight, it is critically important to carefully assess if reports being received about a clinician are valid and if there is any chance that the issues represent a personality clash more than a defect in knowledge, personality, or impairment. If the problems are confirmed, the chairperson is obligated to address the inappropriate behavior,

prevent harm, and tell the truth even if the physician in question no longer works for the department. In fact, physicians who share patients have a greater insight into the quality of care delivered by colleagues than can be gleaned from an examination or knowledge of certification or continuing medical education [54]. In this specific scenario, the young clinician may be under pressure to pick up her children from daycare soon after 5 pm. A change in her schedule to allow her to leave on time might solve the issue. It is possible that if confronted with the facts, the dermatologist in question would gain insight into the fact that she is not living up to her commitment to professional competence or professional responsibilities [53]. Although this is a very difficult conversation to have with a colleague, it would be ideal if in so doing the colleague agreed to address these flaws through education or appropriate alterations in behavior or schedule. This approach, however, is fraught with risks for the chairperson; there could be legal ramifications if the faculty person in question construed the chairperson’s discussion and opinion as a threat or a restraint of free trade. Additionally, does the chairperson have a responsibility to report evidence of incompetence to the hospital peer review committee? Should a report be delivered to the state medical board or other governing body that is capable of an investigation into the matter? The latter body should be immediately contacted if there is a perceived immediate threat to the health and safety of patients. The professional requirements of a physician are clearly codified and demand “the process of self-regulation, including remediation and discipline of members who have failed to meet professional standards” [54, 55]. Case 6: Handling the Impaired Faculty Member The primacy of the patient again comes into play in this situation [54]. Local or state medical societies have developed approaches to work with, assist and remediate impaired physicians. An immediate conversation with the physician

377 The Ethics of Service as a Department Chairperson or Residency Director

and the development of a plan to assess and remedy this impaired physician is imperative, bringing to bear the resources of the medical center’s Faculty Affairs professionals. Summary Ultimately, the chairperson depends upon everyone from the top to the bottom of the hierarchy

 thical Issues of a Residency E Program Director The ethical ideals of residency program directors are similar to those described above for chairpersons and the issues confronted often overlap with those noted in 7 Box 36.1. Of course, there are special issues that impact these leaders as they are specifically dealing with young, relatively inexperienced and sometimes immature trainees. The issues are summarized in 7 Box 36.2.  

 

Box 36.2 Ethical Responsibilities Balanced by the Program Director 55 To the medical students (i) Avoid bias in the selection of medical students for residency training [56, 57] (ii) Mentor and incorporate medical students into the educational curriculum and clinical work of the department 55 To the residents and fellows (i) Develop a close and mentoring relationship with residents and fellows

to help keep lines of ­communication open so that the complex interactions within a department can be balanced with fairness and transparency [55]. To the extent that the chairperson can maintain the trust of the department by behaving in an ethical manner, faculty, residents, medical students and staff will be able to be mindful of and dedicated to the shared mission of the department and university (See Chapter 24).

(ii) Avoid inappropriate relationships [58, 59] (iii) Handle inappropriate relationships between residents or residents and faculty (iv) Avoid picking favorites (v) Eliminate intimidation [60] (vi) Grade fairly but firmly presenting areas requiring improvement (vii) Create an educational environment that eschews intimidation as a style of education 55 To the chair (i) Involve the chair in important decisions (ii) Protect the chair from perfunctory work 55 To the Designated Institutional Official of the ACGME (i) Follow rules of the Resident Review Committee (ii) Complete all the necessary paperwork required (iii) Meet requirements creatively when it is in the best interest of residents, faculty, and the university

Case Scenarios

Case 1 A residency program has never had an African American resident. The program director recognizes the value of diversity and the program has ranked a number of African American medical

student applicants highly in the department’s rank-order list. The program director is frustrated because there are just not enough qualified applicants from under-represented segments of our society.

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Case 2 A 35-year-old male program director and a 29-year-old female 2nd year (PGY3) dermatology resident are seen at a bar near campus drinking and publicly displaying affection. A group of residents believe they now understand why this female resident was not on the schedule for any holiday call. Case 3 The program director has a meeting with all dermatology residents to discuss the letter he received from the resident review committee (RRC). Certain residents reported that the faculty are not interested in teaching or research. Rather, they want the residents to help them see

more patients and thereby earn a greater incentive payment. In a stern voice, the program director threatens, “These kinds of comments could shut down this program.” Case 4 A program director six years out of residency learns that the residents have not kept surgical logs up to date for the previous year. Furthermore, the records of the residents’ evaluations of the faculty for the past two years have been misplaced. The program director calls a meeting of the residents and asks them to reconstruct their surgical logs and evaluations of the faculty in the next week before the chairperson finds out.

Analysis of Case Scenarios

 ase 1: Dealing with Underrepresented C Minorities in Residency Programs

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This scenario is frequent in dermatology residencies. The ethical principle of justice motivates program directors to consider both the importance of treating every applicant fairly and the educational value of cultural, racial, sexual-orientation, and gender diversity in a residency program [61]. In addition, there is evidence that many patients like to see physicians who share a racial or cultural background. There are data-driven approaches to increasing diversity that emphasize: (1) the connection between resident diversity with medical student and faculty initiatives; (2) a focus improving institutional culture so that under-represented groups desire to enlist; and (3) taking the same scientific approach to diversity efforts that we utilize in our clinical work [62]. In other words, the program director in this scenario is responsible for channeling his or her frustration into an effort to solve the diversity problem beyond ranking under-represented minorities highly. Attracting and inviting minority summer interns from high schools, colleges, and even medical schools without a dermatology depart-

ment to introduce them to the field of dermatology is a way to build a greater applicant pool from this community.

 ase 2: Fraternization and Inappropriate C Sexual Relationships with Residents Many universities, hospitals, and clinics have policies to foster professional working relationships and a healthy professional working environment based on the ethical principle of fairness. These policies are designed to ensure appropriate consideration of the abilities, qualifications and performances of residents and to avoid situations where favoritism or the appearance of favoritism impacts the culture of a residency. The appearance of favoritism can be engendered by the seemingly innocent invitation to a sporting event. Romantic or sexual relationships between a resident and a supervising authority are particularly fraught with the potential for harm to the university, department, individuals involved in the relationship and other faculty and residents. Favoritism can be as pernicious to a resident culture as bias and can increase resident stress [63]. The increasing

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role of requirements for competency in residency education is an effort to shift evaluation to more objective standards and avoid these ethical issues. Whether this is in the organization’s code of conduct or not, the program director in this scenario should immediately disclose this relationship to the chair of the department, the Designated Institutional Official (DIO), or other institutional leadership. Individuals outside the romantic relationship will need to develop a plan to avoid impropriety, conflicts of interest, favoritism, preferential or unfair treatment, or the appearance of any of these. This is particularly important in the area of evaluations. These issues have legal, ethical, and even financial implications if a lawsuit should ever arise from romantic or sexual relationships. Finally, the parties involved must always act professionally while at work. It is inappropriate for them to display affection in front of staff, other residents, or patients.  ase 3: Intimidation Used as a Tool to Silence C Residents The principle of fidelity requires that program directors act in ways that reflect loyalty to their universities, educational programs, and residents. This includes doing what is expected when performing their duties. A key charge of program directors is to act in a manner that will continually improve their programs. When evidence is presented suggesting that some faculty are not interested in teaching and research, the solution is to communicate with residents and faculty to understand the problem and then act to solve the problem through faculty development programs. Ultimately, if necessary, faculty who adamantly do not wish to participate in residency training could be removed and new faculty hired. Intimidation of the type described in this vignette is a form of bullying that is not uncommon in residency programs [64]. This has a deleterious effect on the culture of a program and can impact patient safety even in dermatology

residencies [65]. The residents subjected to harassment have a responsibility to notify their chairperson or Designated Institutional Official (DIO). Leadership can create a committee to investigate the problem, educate faculty and residents, provide various avenues of feedback to assure a safe culture is being developed and create a zero tolerance policy for intimidation focused on the health of both patients and residents [66]. Case 4: Honesty and Trustworthiness The ethical principle of veracity cuts across all aspects of our culture. It is wrong to lie. Lying indicates a lack of respect for people and is still wrong even when there may be a positive outcome because deceit erodes trust. In this scenario, the program director may believe she or he is protecting the program or the residents who may lose their ability to continue their residency in this program. Furthermore, the program director is a role model demonstrating the worst kind of behavior with the suggestion that it is permissible to be dishonest with the residency review committee by constructing surgical logs and reconstructing evaluations long after rotations were completed. Residents are very susceptible to the socialization process often termed, the “hidden curriculum” whereby norms and values are transmitted by the actions of their professors, wittingly or unwittingly, that undermine the formal messages of the declared curriculum [67, 68]. In fact, the acceptance of dishonesty can have a deleterious impact on the residents’ entire careers. Summary The dermatology program director, much like the chairperson, holds a key leadership position in a dermatology department or division. They have the responsibility to develop a curriculum in medical ethics, and comport themselves to the highest moral and ethical standards. Their behavior is the bedrock upon which all other educational activities are built.

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Conflicts of Interest  The authors report no relevant conflicts of interest

References

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43. Maloney ME. Ethical mentorship: the dilemma of success or failure. Clin Dermatol. 2012;30:210–5. 44. Miner A, Menter A. The ethics of consulting with pharmaceutical companies. Clin Dermatol. 2009;27(4):339–45. 45. Draelos ZD. Disclosure: a modest proposal. Clin Dermatol. 2009;27(4):336–8. 46. Hulkower R. The history of the Hippocratic oath: outdated, inauthentic, and yet still relevant. ­Einstein J Biol Med. 2016;25(1):1–44. 47. Stoff BK, Scully K, Housholder AL, et  al. The American Academy of Dermatology Ethics Pledge: I will put my patients’ welfare above all other interests, provide care that adheres to professional standards of practice, provide care for those in need, and foster collegiality through interaction with the medical community. J Am Acad Dermatol. 2016;75:445–8. 48. Ambrose ML, Cropanzano RJ.  A longitudinal analysis of organizational fairness: an examination of reactions to tenure and promotion decisions. Appl Psychol. 2003;88:266–75. 49. De Cremer D, Brockner J, Fishman A, van Dijke M, van Olffen W, Mayer DM.  When do procedural fairness and outcome fairness interact to influence employees work attitudes and behaviors? The moderating effect of uncertainty. J Appl Psychol. 2010;95:291–304. 50. Goldman A, Tabak N.  Perception of ethical climate and its relationship to nurses’ demographic characteristics and job satisfaction. Nurs Ethics. 2010;17(2):233–46. 51. Atkinson TN, Gilleland DS. Virtue blindness and hegemony: qualitative evidence of negotiated ethical frameworks in the social language of university research administration. Sci Eng Ethics. 2007;13(2):195–220. 52. McDougal R, Sokol DK.  The ethical junior: a typology of ethical problems faced by house officers. J R Soc Med. 2008;101(2):67–70. https://doi. org/10.1258/jrsm.2007.070412. 53. American Medical Association Code of Medical Ethics. 9.4.2 Reporting Incompetent or Unethical Behavior by Colleagues. Available at: https://www. ama-assn.org/delivering-care/ethics/reportingincompetent-or-unethical-behaviors-colleagues. [cited 25 December 2020]. 54. Project of the ABIM Foundation, ACP-­ ASIM Foundation, European Federation of Internal Medicine. Medical professionalism in the new millenium: a physician charter. Ann Intern Med. 2002;136(3):243–6. https://doi.org/10.7326/00034819-136-3-200202050-00012. 55. Smith RJ, Lipoff JB. “Pretend you didn’t hear that”- managing ethical dilemmas from the bottom of a medical hierarchy. J Am Acad Dermatol. 2016;74:766–8. 56. Bass A, C W, Schaefer JP, McLaughlin K.  Ingroup bias in residency selection. Med Teach. 2013;35(9):747–51. https://doi.org/10.3109/01421 59X.2013.801937. Epub 2013 Jun 27.

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Ethical Issues in the Dermatology Match Madeline E. DeWane, Lionel Bercovitch, and Jane M. Grant-Kels Contents Why an Ethical Analysis of the Application Process? – 384 Increasing Competition in the Dermatology Match – 385 Ethical Principles at Play – 385 Unethical Behavior by Applicants – 386 Unethical Behavior by Dermatology Programs – 387  iolations of NRMP Policy – 388 V Ethically Questionable Behavior – 389

Systemic Issues with Ethical Implications – 390 T he ERAS Photograph – 390 The “Shotgun” Application Method – 391 Application Cost – 392 Program Screening Methods – 393

Conclusions – 396 References – 396

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_37

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nnLearning Objectives

1. Identify the basic ethical principles underpinning the dermatology match process. 2. Understand potential ethical conflicts and opportunities for unethical behavior facing dermatology applicants and dermatology training programs. 3. Understand systemic issues in the dermatology residency match process with ethical implications for dermatologists, trainees, and patients. 4. Apply basic ethical principles to case scenarios involving various aspects of the dermatology match.

»» Despite the heavy emphasis on professional-

ism in today’s medical school curriculum, and honesty’s location at the core of the American Medical Association (AMA)’s Code of Ethics for physicians, it appears that new physicians are introduced to their profession through a compromised National Resident Matching Program [1].

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The dermatology residency application process is a multifaceted endeavor spanning many months and involving large sums of money. “Away” (audition) rotations, garnering faculty support and mentorship, taking a “fifth year” to do research and publish, engaging in community service activities, participating in the Electronic Residency Application Service (ERAS), traveling for interviews, and managing post-interview communication are all part of this process and culminate in Match Day ceremonies at medical schools across the country. The first centralized matching of graduating medical students with post-­ graduate training programs through the National Resident Matching Program (NRMP) occurred in 1952 [2], although dermatology did not participate in the match until 3 decades later. Prior to the institution of “The Match,” acceptances were often “under-­the-­table” deals without uniform deadlines for decision making. In most specialties, the number of training program openings exceeded the number of applicants. Indeed, the “deferred acceptance” algorithm at the heart of the match gained

international recognition in the years since its institution, and research on the subject received a Nobel Prize in Economic Sciences in 2012 [3]. The NRMP’s current mission is “to match healthcare professionals to graduate medical education and advanced training programs through a process that is fair, efficient, transparent, and reliable” [4].

 hy an Ethical Analysis W of the Application Process? Despite the match itself being heavily regulated (the Match Participation Agreement between the NRMP, applicants, and participating programs is 41 pages long) [5], violations of NRMP policy are common across all fields, including dermatology [1, 6–8]. Additionally, the application process includes more than just the match itself and is rife with opportunities for unethical behavior by both applicants and programs. Future physicians are expected to abide by certain standards; the AMA’s Principles of Medical Ethics states, “Society permits medicine to set standards of ethical and professional conduct for physicians. In return, medicine is expected to hold physicians accountable for meeting those standards and to address lapses in professional conduct when they occur.” [9] We are therefore obligated to explore the ethical issues raised in the residency application process. An unethical process or unethical behavior by training programs sets a bad example for trainees just starting out in their careers. Furthermore, the application process and the match are about more than just graduate medical education; the physicians who come through this system will care for patients and need to be ethical, well-trained, competent, and caring clinicians who put the care of patients above their own needs. Although the ideal outcome of the match is to “place each individual, qualified applicant in a residency well-suited to his or her educational needs,” the larger mission of graduate medical education as a whole is to ensure “maximal access by the public to qualified physicians” [10]. In this chapter we will explore unethical behavior by applicants,

385 Ethical Issues in the Dermatology Match

unethical behavior by dermatology programs, and a variety of systemic issues through this broader ethical lens. The consequences of the match process affect the future and quality of our specialty and therefore this issue is of paramount importance. What kind of applicants are we attracting? Do the best applicants become dermatologists? What lessons do they learn from this process?

Increasing Competition in the Dermatology Match Unethical behavior in the match process arises in and is exacerbated by an atmosphere of intense competition. In 2018, there were 651 applicants for 472 PGY2 dermatology positions, and US medical school seniors matched at a rate of 81.6% [11]. Given the widely known competitive nature of the dermatology match, these applicants tend to be from the top of their medical school classes. Applicant qualifications have steadily increased over time, and in 2018, dermatology-matched US seniors had a mean United States Medical Licensing Examination (USMLE) step I score of 249. Forty-nine percent were Alpha Omega Alpha honor society (AOA) members and 47.6% were from one of the 40 medical schools with the most NIH funding [11]. To compensate for an increasingly competitive process, huge numbers of applications are now submitted per applicant. In 2017, the mean number of applications submitted per matched US senior was 92 and per unmatched US senior was 90 [11]. The financial consequences of this trend are significant, and the total cost to dermatology applicants each year is estimated to be 4.9 million dollars [12]. This is also burdensome for dermatology programs, which receive on average 499 applications each year [13]. A self-perpetuating cycle has resulted in which applicants feel pressured to apply to more programs out of fear of not matching, application numbers (and costs) therefore increase, and the applicant pool continues to become more competitive, leading to more pressure on applicants, more applications submitted, and more work for

faculty in dermatology programs. This cycle is ultimately detrimental to applicants, programs, and potentially patients.

Ethical Principles at Play From an ethical perspective, the match itself can be viewed as a utilitarian, or social consequentialist, process; the goal is to produce the greatest good for the greatest number of people [14]. While traditional principles of medical ethics  – beneficence, nonmaleficence, autonomy, and justice [15] – apply more specifically to the physician-patient relationship, many of the concepts embodied in the AMA’s Principles of Medical Ethics are applicable to the match process [9]. These ideals include honesty, professionalism, fairness, and social responsibility, and they can be applied at both the individual and system levels (. Table 37.1). All match participants have both individual rights and ethical obligations. Applicants should be free to apply to and select the programs they are most interested in without external pressure or coercion. Similarly, programs should be free to select the applicants they believe are best qualified and will be the best fit for their training programs. Both applicants and programs should communicate honestly and behave with integrity, as professionalism is central to medical practice (and has been considered a required competency by the Accreditation Council for Graduate Medical Education (ACGME) since 1999) [16]. All dermatology applicants also deserve an “equal playing field” from which to apply for post-graduate training. While equalizing resources completely may not be realistic, we should strive to promote a system in which certain groups are not unfairly disadvantaged. Furthermore, the needs of the system as a whole should be considered; for example, the need to attract a more diverse pool of dermatology trainees. Social justice – which argues that all people deserve access to the same rights and resources  – is a growing focus in medicine and medical education [17]. As physicians, we have an ethical obligation to promote diversity (of race, ethnicity, religion,  

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..      Table 37.1  Ethical principles relevant to the dermatology match Principle

Definition

Social consequentialism/ utilitarianism

The principle that actions are right (ethical) if they produce the most good for the greatest number of people

Honesty

Adherence to the facts Truthful representation

Professionalism

A promise to uphold shared competency standards and ethical values

Integrity

Adherence to a code of ethics Uprightness of character or action

Fairness

Lack of favoritism Impartiality

Social responsibility

The obligation to act in a way that benefits society as a whole

socioeconomic status, etc.) [18], especially in a field that is relatively homogenous. Finally, physicians and trainees have a “duty of care that extends to the patient, professional colleagues, and to society as a whole” [19]. It is important to consider that our actions outside the physician-patient ­relationship are meaningful and still subject to our professional duty to “do good,” especially when considering aspects of medical education and training that will directly impact future patients; in this case, the selection of candidates for postgraduate training. Does the dermatology match set the tone for physicians who value this “duty of care” or does it select for future dermatologists who will place their own interests over those of their patients?

Unethical Behavior by Applicants

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An applicant entering the match process has several ethical obligations: first, to abide by NRMP policies; second, to accurately represent his or her own qualifications; and third, to be genuine and truthful in interactions with potential training programs in terms of level of interest and future career goals. One of the biggest concerns regarding applicant behavior during the match process is the dishonest inflation of publications, volunteer experiences, and other medical school activities in the ERAS application. This behav-

ior is clearly unethical but has been demonstrated to occur across all fields of medicine [20–25]. Just as mean step I scores have steadily increased among dermatology applicants, so have the numbers of research experiences, publications, and volunteer experiences reported by candidates for dermatology residencies. The mean number of research experiences for matched US seniors in 2018 was 5.2 (compared to 4.8 for unmatched applicants), and the mean number of volunteer experiences was 9.1 (compared to 7.5 for unmatched US seniors) [11]. Most notably, the mean number of abstracts, presentations, and publications is climbing, and the gap between those who match and those who do not match is growing [26]. In 2018, matched US seniors had an average of 14.7 abstracts, presentations, and publications, compared to 8.6 for unmatched applicants [11]. These statistics highlight an intense pressure on applicants to publish and present at meetings, which may be fueling academic misrepresentation. Sadly, those applicants who do exaggerate their academic achievements are likely to benefit in our current system. Publication number is known to be associated with an increased chance of matching [27], but some observational studies have suggested that neither the quality of the journal nor first authorship influence outcomes [27, 28]. A comparative study of over 300 dermatology residency applicants during the 2007 application season

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found that only the length of an applicant’s list of “submitted” manuscripts increased the chance of matching, while the number of published manuscripts and combined impact factor of all published manuscripts did not [28]. These data suggest a tacit encouragement of quantity over quality in terms of publications [26]. In a 2012 study of dermatology applications, almost half of all applicants had no PubMed indexed publications, and only 91/558 manuscripts that were listed as submitted were eventually published. This same study found that applicants who accurately reported their manuscripts had less chance of matching compared to their peers [28]. Even more concerning is that the encouragement to inflate publication statistics is not always tacit; anecdotally, students have received advice from other students and even from faculty members to list rejected manuscripts as “submitted” in ERAS in order to increase their chances of matching. Applicants may also face pressure during the match process to make untrue promises about their program preferences or future career goals. For example, applicants may tell multiple programs that they are their “first choice” because applicants believe this will increase their chance of matching. Similarly, applicants may believe that being disingenuous about their career goals (medical or pediatric vs surgical dermatology, for example) may make them more attractive to certain programs. Outright dishonesty on the part of the applicant is clearly unethical and unprofessional. Even if applicant behavior is a response to external forces (intense pressure to publish or inappropriate questions asked by dermatology programs on interview day), the field of dermatology should not be encouraging or allowing dishonesty from the outset of trainees’ careers. Additionally, a willingness to engage in unprofessional behavior may be predictive of future actions. Studies have demonstrated that unprofessional behavior in medical school is predictive of medical board disciplinary action later in professional life, suggesting that this is not a time-limited issue [29]. Finally, when the system in which applicants must participate to secure training in dermatology may be encouraging dishonest

behavior, we should take seriously the need to view that system critically and re-evaluate how we select candidates for postgraduate training.

 nethical Behavior by U Dermatology Programs Just as applicants have their own goals and ethical obligations in the match process, so too do residency programs and dermatology faculty (. Fig. 37.1). The goal of a resident selection committee (RSC) is to select the best, most qualified applicants possible who will benefit from and contribute to a program’s unique training environment and who will ultimately become caring, qualified dermatologists. Resident selection committees seek to recruit individuals who will do well both during training and in their future careers [10]. A secondary goal of some programs is to train applicants who are likely to stay in the geographic region, practice in underserved areas, or become clinician-­scientists. More broadly, RSCs are also stewards of professional standards and public well-being because the clinicians they train will go on to care for patients. At times, an RSC’s goals and ethical obligations may conflict with both the realities of the match process itself and the expectations and metrics of the ACGME.  There is significant pressure on programs to match their top applicants in order to secure the best match data, for example, and so RSCs may only want to rank those applicants who are most likely to come to their programs [1]. Board pass-rates are also heavily emphasized by the ACGME. This may cause some programs to specifically select applicants they believe will be most successful taking the dermatology board certification exam. Anecdotally, department chairs have been known to brag about the number of publications or the step I scores of their entering first year dermatology residents. Training programs may also behave unethically both through outright violations of NRMP policy and through less clear-cut behaviors, such as “reserving” residency positions for internal candidates.  

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- Accurately represent the residency program

- Accurately represent own qualifications - Be genuine and truthful in interactions with potential training programs

- Abide by NRMP policy

- Select the best, most qualified applicants who are likely to succeed in a given program’s training environment and become caring, qualified dermatologists

- Communicate honestly

- Avoid asking inappropriate questions about prior interviews or personal characteristics, such as race, age, sexual orientation, or marital status

- Behave with integrity and professionalism

- Avoid soliciting post-interview communication from applicants - Be genuine in post-interview communication with applicants - Avoid nepotism during the interview selection or rank list determination processes

..      Fig. 37.1  The overlapping ethical obligations of applicants and residency programs during the dermatology residency application process

Violations of NRMP Policy

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Most program violations of NRMP policy occur during and after applicant interviews. NRMP policy states that “participants must demonstrate professional behavior throughout the application, interview, and matching processes by observing practices that protect the right of the applicants and programs to determine their selections in the absence of unwanted pressure” [5]. While both applicants and programs should have the autonomy to make decisions about their preferences free from external pressure, there are considerable data that programs routinely violate match rules during the residency application process [1, 6–8]. One of the most commonly reported violations is program faculty or staff asking inappropriate questions during the interview day [30]. The NRMP’s communication code of conduct states that “Programs shall not ask an applicant to disclose the names, specialties, geographic location, or other identifying

information about programs to which the applicant has or may apply” [31]. In a 2012 study of dermatology applicants, however, 90% were asked about interviews at other programs [6]. Asking this question places undue pressure on applicants, makes interviewees uncomfortable, provides little helpful information in terms of evaluating the candidate, and may elicit a disingenuous response. Similarly, the match communication code of conduct states that program directors should “recognize the negative consequences that can result from questions about age, gender, religion, sexual orientation, and family status, and shall ensure that communication with applicants remains focused on the applicant’s goodness of fit within their programs” [31]. Under laws enforced by the Equal Employment Opportunity Commission (EEOC), it is illegal to discriminate against applicants or employees because of race, religion, sex, sexual orientation, pregnancy status, or age [32]. While questions about these top-

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ics are not technically illegal unless they lead to discrimination [33], they are inappropriate, violate NRMP policy, and have no bearing on an applicant’s qualifications. However, 44% of all dermatology applicants report being asked about their marital status during interviews, and 19% report being asked if they had or intended to have children [6]. Post-interview communication is also frequently problematic. The NRMP addresses the issue of post-interview communication in its code of conduct: “Program directors shall not solicit or require post-interview communication from applicants, nor shall program directors engage in post-interview communication that is disingenuous for the purpose of influencing applicants’ ranking preferences” [31]. Post-interview communication is again discussed in the match agreement, which permits program directors and applicants to express interest in each other, but prohibits the solicitation of statements implying a commitment. However, the NRMP acknowledges that “some applicants may misinterpret statements of encouragement to signify a commitment on the part of the program, and some programs may make misleading statements” [5, 34]. The atmosphere that results is uncomfortable and difficult to navigate for both applicants and programs. Studies have revealed that 32% of dermatology applicants feel pressured to reveal how they intend to rank a program before match day, and 15% were directly asked. Eleven percent of applicants received information about how they were ranked from program personnel, and in 50% of cases this information affected the applicant’s rank order list (ROL). Students report feeling uneasy about post-interview contact, being unsure whether or not they were expected to call programs to express their interest, and fearing being asked directly about their ROL [6]. The power imbalance inherent in the interview process for dermatology residency programs places an added responsibility on training programs to behave ethically, and it seems that as a whole, programs are not succeeding. Applicants report feeling uncomfortable during the interview process and often do not report match violations when they occur. The end result for students has been described

as “defeated compliance with an imperfect system” [6]. Keypoint The power imbalance inherent in the residency application process places an added responsibility on residency programs to behave with integrity and set the ethical tone for the next generation of dermatologists.

Ethically Questionable Behavior While violations of NRMP policy are clearly unethical, there are also issues faced by training programs that are less clear-cut. A common one, for example, is whether or not it is ethical to informally “promise” a residency position to an internal candidate. This often involves a medical student from the home institution, research fellows, or faculty spouses, family, or friends and was first pointed out as a potential problem in the match process in 1983 [35]. In these scenarios, a spot is unofficially reserved for a particular candidate, but interviews are conducted as if that position is open. This behavior is not explicitly addressed in the NRMP code of conduct, and it would be very difficult to identify or prevent, but it is certainly worth considering whether “reserving” spots for internal candidates is ethical. External applicants are essentially misled into thinking that more residency positions are available than actually are, and surveyed dermatology residents feel that this causes applicants to waste time and money [1]. Positions on hold for a pre-selected candidate should theoretically be removed from the interview process. However, programs are not permitted to allow positions outside the match except in highly specific circumstances (newly approved positions or unanticipated openings that occur after the match cycle, for example). Additionally, “reserving” a position is a significant risk for a program to take and violates the original intention of the match, which was to standardize the time frame in which applicants must make decisions about where they will train. Students should be free to explore their options without feeling

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beholden to any given program, and residency programs should not be forced to take the risk of holding a position for an applicant who may turn out to be disingenuous about his or her intentions. Additionally, it is not unreasonable for residency programs to invest in recruiting applicants with whom they already have established connections. However, concerns about nepotism are valid, and training programs should be certain that if they are recruiting known applicants it is because those applicants are well qualified and would be a good fit for the program. Nepotism may also be a potential factor in a program’s creation of their ROL. The lineup of specific individuals who create the ROL varies between institutions. At some institutions, it may be that each faculty member gets a single, equal vote, but at other institutions, it is conceivable that more senior or better-­ known faculty members may have disproportionate influence. There is little transparency in how the ROL is generated across institutions, and so it is unclear how democratic the process is and whether non-merit-based favoritism may be shown to certain individuals.

 ystemic Issues with Ethical S Implications

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When examining the ethics of the application process, it is important to take a consequentialist view of the system as a whole. If aspects of our current system negatively impact trainees, programs, and future patients, there are serious ethical implications, even if the applicants and faculty within the system are behaving ethically on an individual level. In the remainder of this chapter we will explore issues of this type that are system-wide but have ethical implications because of their potential negative consequences (. Table 37.2).  

The ERAS Photograph A photograph  – usually a professional headshot  – is a part of every applicant’s ERAS application. According to ERAS, the appli-

..      Table 37.2  Systemic issues with potential negative consequences Issue

Potential negative consequences

The ERAS photograph (and demographic data)

Unconscious bias, prejudice, or discrimination may influence decision making

The “shotgun” application method

Applicants who apply to programs they are not interested in may disadvantage other interested candidates Drives up costs (disadvantaging students with fewer resources) Increases application burden on programs

Exorbitant costs

Disadvantages students from lower socio-economic status (SES) backgrounds May decrease diversity in the field

Program screening methods and lack of holistic review

Overemphasis on step I scores may not translate into selection of the best clinicians AOA chapters do not exist at all medical schools and selection process may be biased Geographic screening may limit diversity and unfairly disadvantage students who genuinely wish to relocate Lack of emphasis on applicant humanity and sincerity

cant photograph is most often used by programs in order to identify applicants on interview day [36]. However, there is concern that including a photograph in the ERAS application in the pre-interview phase propagates discrimination and is therefore an unethical aspect of the application process [37]. Multiple studies have indicated that bias influences admissions and hiring decisions across many fields, including in medicine [38]. The ERAS photograph creates an opportunity for unconscious bias to impact decision

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making, and discrimination could potentially occur based on race, age, gender, religion, subjective perceptions of attractiveness, and body habitus [37, 39]. In fact, in a 2018 study of dermatology applicants, candidates who smiled, wore glasses, and wore jackets in their ERAS photographs were more likely to match. Women with shoulder length or longer hair were also more likely to have a positive outcome [40]. A recent multi-institution deception study simulating the residency selection process found that facial attractiveness (as presented in an ERAS photograph) was more influential in interview selection than class rank, clerkship grades, publication number, and AOA status. In this same study, obesity was equal in influence to these traditional medical school performance metrics [41]. Data also suggest that when photographs are removed from the application process, the potential for bias to influence decision making is significantly lessened. In Sweden, for example, a process was implemented in which applications did not include name, gender, photo, country of origin, age, or ethnicity. In this context, the job market improved significantly for both women and minorities [42]. Not only does the ERAS photograph introduce an opportunity for bias or outright discrimination, it has little or no value pre-­ interview. Furthermore, asking for a pre-­ interview photograph violates the standards set by the EEOC.  The EEOC states, “As a general rule, the information obtained and requested through the pre-employment process should be limited to those essential for determining if a person is qualified for the job; whereas, information regarding race, sex, national origin, age, and religion are irrelevant in such determinations. Employers should not ask for a photograph of an applicant. If needed for identification purposes, a photograph may be obtained after an offer of employment is made and accepted” [32]. Given that residency applicant photographs serve no purpose pre-interview, risk introducing bias into the interview selection process, and violate the standards set by the EEOC, it is our opinion that they should be removed as a component of the ERAS application. It could also be argued that race, sex, national

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origin, and age should also be removed from the ERAS application for the same reasons.

The “Shotgun” Application Method The increasing competitiveness of the dermatology match (along with the ease of applying to additional programs in ERAS) has created a situation in which almost all dermatology applicants apply to almost all dermatology training programs, a strategy referred to as the “shotgun” method. There are 142 ACGME-­ accredited dermatology residency programs in the US [43], and in 2017 the mean number of applications submitted per matched US senior was 92 [11]. Survey data reveals that >70% of dermatology residents applied to >60 programs [44]. This occurred in spite of nearly 75% of dermatology faculty recommending applying to 40 programs [44, 45]. However, the “shotgun” application method is not entirely unwarranted; a longer ROL is directly correlated with probability of matching, and ROLs are getting longer over time across all specialties for both matched and unmatched applicants [11]. From an applicant’s perspective, more applications submitted may translate into more interview invitations and more interviews means the chance to submit a longer ROL. Also encouraging a “shotgun” approach is the information imbalance between applicants and programs; there are limited resources to learn about programs pre-interview, advisors may be limited to regional knowledge, and it’s very challenging to assess the strengths and weaknesses of potential programs and whether or not they might be a good fit prior to an interview [46]. It is difficult to argue that any given individual is behaving unethically by applying to all or almost all programs if he or she genuinely has some interest in each one. However, because of the pressure to apply to as many programs as possible, many applicants are likely to apply to at least a few programs that they would not attend or are located in geographic areas where they would not consider living. If these applicants then decline an

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interview invitation (often at the last minute), they potentially take a spot from other applicants with a genuine interest in that program. Additionally, the consequences of this “shotgun” application trend are felt across the board with exorbitant costs to applicants and a huge application burden for programs. The ethical issue here is one of individual autonomy versus collective responsibility. The applicant’s goal is to maximize the chances of matching, given the personally disastrous consequences of failing to match. The applicant’s ethical obligation is to do so in an honest and truthful manner. While the individual applicant has a right to apply to as many programs as he or she wants, there is a collective responsibility to ensure that the system through which we select applicants for postgraduate training works in as fair and efficient a manner as possible. On a systems level, there have been calls to limit the number of programs to which a single applicant can apply [47, 48], but there is no universal agreement on whether this would be a fair or effective strategy (or whether application number would have to be limited across the board for all specialties). In a 2018 survey, only 36% of residents and 49% of faculty felt there should be a limit on application number [44]. Arguments against imposing a submission maximum include that it would unfairly limit applicants’ autonomy and that it could unfairly disadvantage certain groups, although there are no data at this point to either support or refute this possibility. While there is general consensus on the burdens on applicants and programs created by the large number of applications, there is no consensus on a solution as long as dermatology remains so highly competitive.

Application Cost Because of the large number of applications submitted per applicant, dermatology has one of the most expensive residency application processes across all specialties [44]. A 2014 analysis estimated that the cost of applying is $11,324 for matched US applicants and $9058 for unmatched applicants [12]. Fifty-seven percent of dermatology residents report that

they needed to seek additional funding (in the form of loans, family support, or credit cards) in order to offset the cost of the residency application process [44]. While videoconferencing has been suggested as a possibility to decrease the cost of interview travel, 2018 survey data indicates that both residents and faculty believe applicants who interview remotely are not given equal consideration, making it an untenable strategy unless universally applied [44]. Additionally, one contributor to cost that is often omitted or underestimated in financial analyses is “away” or “audition” rotations. There is considerable pressure for applicants to complete these rotations during the fourth year of medical school, as personal prior knowledge of the applicant, an audition rotation, and perceived interest in a program are all factors consistently cited by program directors as valuable in making decisions about who to interview [11]. A majority of dermatology applicants (53%) match at a program they are connected to in some way, whether because it is at their home institution (29%), they did a research fellowship (6%), or they completed an away rotation (18%) [49]. Existing analyses estimate a single away rotation to cost $2142 [12], but this is likely an underestimate when considering the expenses of travel, housing, parking, and fees paid to the host program. The system of away rotations (and dermatology residency application in general) confers a substantial advantage to applicants who can afford to do more away rotations, have more flexible medical school schedules, have the financial freedom to apply to more programs and attend more interviews, and do not have family obligations that make travel difficult [50]. The primary ethical concern surrounding the exorbitantly high cost of application is that it unfairly disadvantages students from lower socioeconomic status (SES) backgrounds [44]. Forty-three percent of dermatology residents and 45% of dermatology faculty believe that individuals from lower SES backgrounds are deterred from even applying to dermatology programs because of cost. Fifty percent of faculty believe that decreasing the overall cost of the application process would

393 Ethical Issues in the Dermatology Match

enable more applicants from diverse backgrounds to match in dermatology [44]. It has also been suggested that the high cost of applying may exacerbate dermatology’s significant lack of racial and ethnic diversity [51]. In multiple recent calls to action to address the issue of diversity in dermatology it has been emphasized that inclusivity in the field is of utmost importance [44, 51–54]. The financial burden of applying to dermatology residency may run counter to diversity efforts. Dermatologists treat skin disease on skin of all colors, and it is reasonable to expect that the members of our profession should mirror the diversity of our patients. Additionally, a more diverse healthcare workforce has been shown to improve patient outcomes. Data from primary care indicates that race concordance has been associated with longer visit times and positive perception by patients [55, 56]. Historically, nonwhite physicians have also been more likely to care for minority and underserved populations [57]. Although application fees are set by outside organizations, dermatologists have an obligation to examine the culture of the application process, especially when the pressure it creates encourages students to spend exorbitantly on away rotations and applications and deters students from lower SES backgrounds from considering the field.

Program Screening Methods The average dermatology training program has four open positions each year, receives 485 applications, and sends 38 interview invitations. Because of this volume, 80% of faculty believe the amount of time needed to review applications is too high and only 45% agree that 80–100% of applications are reviewed in detail [44]. On average, over a third (34%) of applicants are rejected pre-interview at each training program based on a standardized screening process [11]. Contributing to the increasing use of screening metrics may be the lack of objective data in the ERAS application. Letters of recommendation, for example, can be difficult to interpret, redundant, or use a complicated

hierarchy of “code words,” and the issue of trait inflation (an overemphasis on or exaggeration of an applicant’s positive attributes) is commonly cited as a problem by faculty [58– 60]. Additionally, although medical schools provide a Medical Student Performance Evaluation (MSPE), they may be hesitant to convey negative information about students (even when accurate) because medical schools are more highly regarded when their match rates are high [61]. Common screening or filter metrics include Step I scores, honor society (AOA) status, and geography: 1. The vast majority of dermatology residency programs have a target Step I score below which they usually will not interview candidates. A mere 18% require only a passing score [11]. The National Board of Medical Examiners (NBME) states that USMLE Step I assesses whether students can “understand and apply important concepts of the science basics to the practice of medicine, with special emphasis on principles and mechanisms underlying health, disease, and modes of therapy” [62]. Critics of using Step I scores as a screening metric argue that the exam is meant to measure content knowledge, and although it predicts performance on in-­training and certification exams, it is not a determinant of success during or after residency or of clinical competence [63, 64]. The emphasis on Step I scores during the residency application process is exacerbated by the fact that the ACGME focuses heavily on board pass rates for program accreditation. This motivates programs to recruit good test takers rather than good clinicians [61]. 2. Half of all US seniors who matched in dermatology in 2018 were AOA members [11]. However, not all medical schools have an AOA chapter. Students at these schools are thus unfairly disadvantaged when residency programs filter out non-AOA applicants. Additionally, the selection process for AOA is subject to bias. In 2015, 5.8% of US medical students identified as black, but black students made up only 0.7% of AOA members [65]. In a 2017 cohort study of 4655 US medical students, the odds of

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AOA membership were six times greater for white students than black students (and two times greater for Asian students), even when controlling for Step I score, research productivity, community service, leadership activity, and Gold Humanism Honor Society status [65]. Is it ethical to use a racially biased academic distinction that does not exist at all medical schools to screen applicants for residency? 3. It is known that applicants are more likely to match at programs that are geographically close to them [66]. Restricting applications based on geography can decrease diversity (of backgrounds, experiences, and medical school training) in residency programs. Additionally, pigeonholing students based on geography is unfair to those applicants who are genuinely interested in traveling for residency [50]. Nonetheless, residency programs want to rank applicants who are likely to also rank them highly, and so geography is a useful predictor to use. The risk is that this creates a self-fulfilling prophecy and unfairly limits applicant choice (and program diversity) as a result. Ultimately, the use of screening methods to automatically eliminate a certain proportion of applications results in a subset of top-­tier candidates receiving the majority of interview offers to the same set of regional schools with similar demographics [61]. Screening based on the metrics discussed above may cause the field to lose interested and qualified applicants who would be excellent clinicians, researchers,

etc. and limits diversity in dermatology in general [50, 51, 63]. The emphasis on objective metrics of success (such as exam scores or number of publications) has left programs with little way to evaluate the humanity or sincerity of applicants. The current process selects for individuals who are more extrinsically than intrinsically motivated; the least valued factors in program director surveys traditionally include those focused on community and humanism, such as foreign language fluency, volunteer experiences, and Gold Humanism Honor Society status [51]. Using our current system, it is unclear whether we are really selecting the best future caretakers for our patients and our specialty. In response to this issue there have been multiple calls to institute a more holistic review process for dermatology residency applications [47, 51, 64]. Instituting a submission maximum on applications per dermatology applicant has again been suggested as a possible solution to make the process more manageable (for all involved) and more personal [50], although it is unclear whether this would be practical or achieve the desired effect. Efforts to holistically review applications are time- and faculty-intensive but have succeeded in increasing diversity in medical schools without changing entering student metrics [67]. Changing the application process is not without challenges, but we have an obligation to ensure that we are selecting the best candidates (those who will make the best dermatologists) for both the sake of the field and the sake of our patients.

Case Scenarios

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Case 1 A fourth-year medical student, student A, is preparing his ERAS application. He scored well on Step I and has strong letters of recommendation but has fewer publications than most dermatology applicants. His mentor suggests that he list a previously rejected paper as “submitted” on his ERAS application because “everyone does it, and you should get credit for the work you did writing the paper even if it won’t get published.”

The temptation that student A may feel to exaggerate his academic accomplishments is understandable, especially in the context of a high-pressure and competitive application process. A longer list of publications is correlated with an increased probability of matching. This student likely feels additional pressure because he already has fewer publications than most dermatology applicants. However, neither of these factors justify listing his rejected manuscript as “submitted” on his ERAS application

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because it would be dishonest. It is particularly concerning in this scenario that this course of action was suggested by the student’s mentor. Though his mentor’s assertion that he deserves recognition for his work is valid, it is not ethical to list this manuscript as submitted nor is it appropriate for his mentor to suggest it. A better course of action would be for the mentor to work with the student on revising the manuscript and re-submitting to another journal. If this cannot be completed by the time this student’s ERAS application is due, the manuscript should not be included. Ethical behavior and academic honesty are critical components of a career in dermatology. The student (and mentor) should act with integrity. Case 2 The dermatology department at Generic School of Medicine (GSM) has an outstanding research fellow who is applying for dermatology residency. The faculty feel strongly that the fellow should be “ranked to match,” although interviews have not yet been held. Prior to interview day, the program director decides to unofficially “hold” one of the program’s four open PGY2 positions for the fellow. This is a complex scenario. The dermatology department at GSM has every right to recruit their research fellow and rank him or her “to match.” However, the impact that making this decision prior to the interview process has on other applicants must be considered, even if the decision is made internally and kept private. External candidates might perceive the department’s decision to be unfair if they interview for four positions when only three are actually available (or more so if only two positions are officially open). Furthermore, the dermatology department should ensure that their interest in keeping the research fellow as a resident is based on his or her qualifications and fit for the program and not on personal factors, a familial relationship, or other attributes that might suggest nepotism. The department must also recognize that the fellow still has the autonomy to decide to go elsewhere, and he or she should be able to make this decision without external pressure. Ultimately, the best and most ethical

course of action is for this department to delay any decisions about the research fellow until after interviews are held. This approach puts all candidates who are interviewed on an “equal playing field.” If, after interviews are completed, the department still believes the fellow is one of the best qualified applicants and a good fit for the program, they should rank that individual highly without hesitation. Case 3 A fourth year medical student is interviewing at one of her top choice programs. When she sits down with the program director (PD), the PD asks her where she has interviewed so far. She is uncomfortable but answers honestly. The PD then asks, “Which one did you like best?” This is unfortunately a common scenario based on surveys of past dermatology applicants. Asking about prior interviews and rank list ordering are both violations of NRMP policy and constitute unethical behavior on the part of this PD.  Asking this student about where she has been interviewed and her favorite program so far places an undue burden on the applicant. The applicant may feel pressured to lie in order to appease the individual interviewing her. While it would be unethical to be intentionally dishonest with this PD, the applicant also has no obligation to answer. However, she might find it hard to avoid answering the question in a diplomatic manner. The dynamics of this situation shift somewhat if the student is interviewing at her home institution and this PD is her chosen mentor. In this case, the PD should ask the student if she feels comfortable and would like to discuss her interview experiences so far. Should the applicant desire, she and her mentor should be able to discuss her rank order list, and this discussion should be considered confidential and not shared with other faculty or impact the program’s ultimate ROL. Case 4 A fourth-year medical student calls the Generic School of Medicine (GSM) dermatology department and tells the program director (PD) that GSM is her number one choice. When

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GSM ranks her first and she goes somewhere else, does the program director have an ethical obligation to let the program that she is attending know of her behavior? Medical students should be as honest as possible in their communications with potential training programs. National Residency Match Program policy does not prohibit applicants from expressing interest in their top choice programs. However, in this scenario it seems that the applicant has been untruthful by telling GSM that their program was her “number one” choice. The applicant’s intentions in this scenario were likely multifaceted. She may have intentionally lied to increase the chance that GSM would rank her highly. This is dishonest and disadvantages other applicants, but may be commonplace behavior among applicants fearful of not matching. This applicant may also have simply changed her mind after having communicated with GSM.  In this case, her phone call may have been premature and irresponsible, but not necessarily unethical. Finally, the applicant may have inexpertly chosen her words, intending to convey that she would rank GSM highly without committing to ranking the program first. As discussed in this chapter, dermatology applicants report feeling generally uncertain about how to handle post-interview communication. This student may have received advice from peers or mentors to make phone calls or she may have been pressured by resi-

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The match process is heavily regulated, but as outlined in this chapter there is plenty of opportunity for both applicants and programs to behave unethically. Additionally, there are multiple systemic issues within the application and match processes that may disadvantage certain groups and have important ethical implications for dermatology trainees, current dermatologists, and our patients. Dermatologists and trainees involved in the application process should hold themselves to a high ethical standard in terms of their own

dency programs to provide updates. It is scenarios of this type that have spurred calls among dermatology programs to eliminate the expectation of (or even prohibit) post-interview communication entirely in order to protect both applicants and programs [1, 6]. Ultimately, it is impossible to know what this applicant’s intentions were when she spoke with GSM. In light of this, it is difficult to justify the PD taking action based on unfounded assumptions about her behavior. There is a massive power imbalance inherent in the dermatology residency application process; dermatology faculty deal with the match process year after year, while students (ideally) participate only once and must rely on mentors, peers, and the advice of residents who have successfully matched to guide their behavior. Students are obligated to behave with ­integrity but in uncertain scenarios such as this one, the benefit of the doubt should be granted to the applicant. This is not to say that students who behave in clearly unethical ways should be excused. However, we should recognize that the process is complex, the rules (both written and unwritten) can be hard to interpret, and dishonest behavior in post-interview communication is difficult to characterize. While the GSM program director may suspect that this applicant intentionally lied, the PD cannot know for sure. As such, it is not appropriate to contact the student’s chosen program and share communication that the student believed to be privileged.

behavior and take a critical view of the system itself to identify ways in which it can be made more effective, fairer, and more ethical.

References 1. Sbicca JA, Gorell ES, Kanzler MH, Lane AT.  The integrity of the dermatology National Resident Matching Program: results of a national study. J Am Acad Dermatol. 2010;63(4):594–601. 2. Peranson E, Randlett RR.  The NRMP match ing algorithm revisited: theory versus practice. National Resident Matching Program. Acad Med. 1995;70(6):477–84; discussion 485-489

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3. Nobel Prize [Internet]. The Match, National Resident Matching Program. [cited 13 May 2019]. Available from: http://www.­nrmp.­org/nobel-prize/. 4. About NRMP [Internet]. The Match, National Resident Matching Program. [cited 14 May 2019]. Available from: http://www.­nrmp.­org/about-nrmp/. 5. Professionalism and the match [Internet]. The Match, National Resident Matching Program. [cited 13 May 2019]. Available from: http://www.­nrmp.­org/professionalism-and-the-match/. 6. Sbicca JA, Gorell ES, Peng DH, Lane AT. A followup survey of the integrity of the dermatology National Resident Matching Program. J Am Acad Dermatol. 2012;67(3):429–35. 7. Miller JB, Schaad DC, Crittenden RA, Oriol NE, MacLaren C.  Communication between programs and applicants during residency selection: effects of the match on medical students’ professional development. Acad Med. 2003;78(4):403–11. 8. Anderson KD, Jacobs DM, Blue AV. Is match ethics an oxymoron? Am J Surg. 1999;177(3):237–9. 9. AMA principles of medical ethics [Internet]. American Medical Association. [cited 15 May 2019]. Available from: https://www.­ama-assn.­org/about/publications-newsletters/ama-principles-­medical-ethics. 10. Katsufrakis PJ, Uhler TA, Jones LD. The residency application process: pursuing improved outcomes through better understanding of the issues. Acad Med. 2016;91(11):1483–7. 11. Main residency match data and reports [Internet]. The Match, National Resident Matching Program. [cited 9 May 2019]. Available from: http://www.­nrmp.­ org/main-residency-match-data/. 12. Mansouri B, Walker GD, Mitchell J, Henderson RA. The cost of applying to dermatology residency: 2014 data estimates. J Am Acad Dermatol. 2016;74(4):754–6. 13. Data and Analysis – AAMC [Internet]. [cited 9 May 2019]. Available from: https://www.­aamc.­org/data. 14. Common ethical issues [Internet]. Syracuse University School of Education. 2018 [cited 14 May 2019]. Available from: https://soe.­syr.­edu/departments/academic/counseling-human-services/modules/ethical/. 15. Beauchamp TL, Childress JF. Principles of biomedical ethics. New York: Oxford University Press; 1979. 16. ACGME.  ACGME Outcome Project. 1999 [cited 6 Jun 2019]; Available from: http://www.­ucdenver.­edu/ academics/colleges/medicalschool/departments/pediatrics/meded/fellowships/Documents/ACGME%20 Outcome%20Project.­pdf. 17. Donohoe M, Schiff G. A call to service: social justice is a public health issue. AMA J Ethics. 2014;16(9):699– 707. 18. H-140.900 A declaration of professional respon sibility. AMA [Internet]. [cited 15 May 2019]. Available from: https://policysearch.­ama-assn.­org/ policyfinder/detail/social%20responsibility?uri= %2FAMADoc%2FHOD.­xml-0-431.­xml. 19. Kinsinger FS.  Beneficence and the professional’s moral imperative. J Chiropr Humanit. 2010;16(1):44– 6.

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20. Caplan JP, Borus JF, Chang G, Greenberg WE. Poor intentions or poor attention: misrepresentation by applicants to psychiatry residency. Acad Psychiatry. 2008;32(3):225–9. 21. Dale JA, Schmitt CM, Crosby LA. Misrepresentation of research criteria by orthopaedic residency applicants. J Bone Joint Surg Am. 1999;81(12):1679–81. 22. Grover M, Dharamshi F, Goveia C.  Deception by applicants to family practice residencies. Fam Med. 2001;33(6):441–6. 23. Gurudevan SV, Mower WR.  Misrepresentation of research publications among emergency medicine residency applicants. Ann Emerg Med. 1996;27(3):327– 30. 24. Gussman D, Blechman A.  Verification of publications, presentations and posters by applicants to a residency in obstetrics and gynecology. J Reprod Med. 2007;52(4):259–61. 25. Konstantakos EK, Laughlin RT, Markert RJ, Crosby LA.  Follow-up on misrepresentation of research activity by orthopaedic residency applicants: has anything changed? J Bone Joint Surg Am. 2007;89(9):2084–8. 26. Wang JV, Keller M. Pressure to publish for residency applicants in dermatology. Dermatol Online J. 2016;22:3. 27. Stratman EJ, Ness RM. Factors associated with successful matching to dermatology residency programs by reapplicants and other applicants who previously graduated from medical school. Arch Dermatol. 2011;147(2):196–202. 28. Maverakis E, Li C-S, Alikhan A, Lin T-C, Idriss N, Armstrong AW.  The effect of academic “misrepresentation” on residency match outcomes. Dermatol Online J. 2012;18:1):1. 29. Papadakis MA, Hodgson CS, Teherani A, Kohatsu ND.  Unprofessional behavior in medical school is associated with subsequent disciplinary action by a state medical board. Acad Med. 2004;79(3):244–9. 30. Reporting and investigation of violations [Internet]. The Match, National Resident Matching Program. [cited 13 May 2019]. Available from: http://www.­ nrmp.­org/reporting-investigation-­violations/. 31. Match communication code of conduct [Internet]. The Match, National Resident Matching Program. [cited 13 May 2019]. Available from: http://www.­ nrmp.­org/communication-code-of-­conduct/. 32. Prohibited practices [Internet]. [cited 9 May 2019]. Available from: https://www.­eeoc.­gov/laws/practices/. 33. Heathfield SM. These job interview questions might as well be illegal! [Internet]. The Balance Careers. [cited 5 Jun 2019]. Available from: https://www.­ thebalancecareers.­com/job-interview-­questions-­thatare-illegal-1918488. 34. Match agreements & resources [Internet]. The Match, National Resident Matching Program. [cited 13 May 2019]. Available from: http://www.­nrmp.­org/matchparticipation-agreements/. 35. Cockerell C, Dixon SL. Are the matching programs for training in dermatology and pathology operating

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fairly and without bias? Am J Dermatopathol. 1983;5(2):193–5. 36. Documents for ERAS® residency applicants [Internet]. [cited 14 May 2019]. Available from: https:// students-residents.­aamc.­org/applying-­residency/article/documents-eras-residency-­applicants/. 37. Waldman RA, Waldman SD, Grant-Kels JM.  The ethical and legal conundrum posed by requesting residency applicants to submit photographs of themselves. Acad Med. 2018;93(11):1602–3. 38. McManus IC, Richards P, Winder BC, Sproston KA, Styles V.  Medical school applicants from ethnic minority groups: identifying if and when they are disadvantaged. BMJ. 1995;310(6978):496–500. 39. Kaufmann MC, Krings F, Sczesny S.  Looking too old? How an older age appearance reduces chances of being hired. Br J Manag. 2016;27(4):727–39. 40. Corcimaru A, Morrell MC, Morrell DS.  Do looks matter? The role of the Electronic Residency Application Service photograph in dermatology residency selection. Dermatol Online J. 2018;24:4. 41. Maxfield CM, Thorpe MP, Desser TS, Heitkamp DE, Hull NC, Johnson KS, et  al. Bias in radiology resident selection: do we discriminate against the obese and unattractive? Academic Medicine [Internet]. 2019 [cited 7 Jun 2019]; Publish Ahead of Print. Available from: https://journals.­lww.­com/academicmedicine/Abstract/publishahead/Bias_in_ Radiology_Resident_Selection__Do_We.­97577.­aspx. 42. Åslund O, Skans ON. Do anonymous job application procedures level the playing field? ILR Rev. 2012;65(1):82–107. 43. ACGME  - Accreditation Data System (ADS) [Internet]. [cited 22 May 2019]. Available from: https://apps.­acgme.­org/ads/Public/Programs/Search? stateId=&specialtyId=8&specialtyCategoryTypeId= &numCode=&city=. 44. Rojek NW, Shinkai K, Fett N. Dermatology faculty and residents’ perspectives on the dermatology residency application process: a nationwide survey. J Am Acad Dermatol. 2018;79(1):157–9. 45. Apply smart in dermatology: new data to consider careers in medicine [Internet]. [cited 1 Feb 2019]. Available from: https://www.­aamc.­org/cim/481320/ applysmartderm.­html. 46. Gliatto P, Karani R. Viewpoint from 2 undergraduate medical education deans the residency application process: working well, needs fixing, or broken beyond repair? J Grad Med Educ. 2016;8(3):307–10. 47. Arnold L, Sullivan C, Okah FA.  A f­ree-­ market approach to the match: a proposal whose time has not yet come. Acad Med. 2018;93(1):16–9. 48. Kraeutler MJ. It is time to change the status quo: limiting orthopedic surgery residency applications. Orthopedics. 2017;40(5):267–8. 49. Clarke JT, Miller JJ, Sceppa J, Goldsmith LA, Long E. Success in the dermatology resident match in 2003:

perceptions and importance of home institutions and away rotations. Arch Dermatol. 2006;142(7):927–47. 50. Korman AM, Grant-Kels JM. Applying to dermatology residency: an ethical approach to an inherently unethical process. Int J Womens Dermatol. 2018;4(3):176–8. 51. Chen A, Shinkai K. Rethinking how we select dermatology applicants—turning the tide. JAMA Dermatol. 2017;153(3):259–60. 52. Pandya AG, Alexis AF, Berger TG, Wintroub BU. Increasing racial and ethnic diversity in dermatology: a call to action. J Am Acad Dermatol. 2016;74(3):584–7. 53. Imadojemu S, James WD.  Increasing African American representation in dermatology. JAMA Dermatol. 2016;152(1):15–6. 54. Pritchett EN, Pandya AG, Ferguson NN, Hu S, Ortega-Loayza AG, Lim HW. Diversity in dermatology: roadmap for improvement. J Am Acad Dermatol. 2018;79(2):337–41. 55. Cooper LA, Roter DL, Johnson RL, Ford DE, Steinwachs DM, Powe NR. Patient-centered communication, ratings of care, and concordance of patient and physician race. Ann Intern Med. 2003;139(11):907– 15. 56. Street RL, O’Malley KJ, Cooper LA, Haidet P.  Understanding concordance in patient-physician relationships: personal and ethnic dimensions of shared identity. Ann Fam Med. 2008;6(3):198– 205. 57. Moy E, Bartman BA.  Physician race and care of minority and medically indigent patients. JAMA. 1995;273(19):1515–20. 58. Wang RF, Zhang M, Alloo A, Stasko T, Miller JE, Kaffenberger JA. Characterization of the 2016-2017 dermatology standardized letter of recommendation. J Clin Aesthet Dermatol. 2018;11(3):26–9. 59. Kaffenberger JA, Mosser J, Lee G, Pootrakul L, Harfmann K, Fabbro S, et al. A retrospective analysis comparing the new standardized letter of recommendation in dermatology with the classic narrative letter of recommendation. J Clin Aesthet Dermatol. 2016;9(9):36–42. 60. Kaffenberger BH, Kaffenberger JA, Zirwas MJ. Academic dermatologists’ views on the value of residency letters of recommendation. J Am Acad Dermatol. 2014;71(2):395–6. 61. Berger JS, Cioletti A.  Viewpoint from 2 graduate medical education deans application overload in the residency match process. J Grad Med Educ. 2016;8(3):317–21. 62. United States Medical Licensing Examination | Step 1 [Internet]. [cited 22 May 2019]. Available from: https://www.­usmle.­org/step-1/. 63. Van Voorhees AS, Enos CW. Diversity in dermatology residency programs. J Investig Dermatol Symp Proc. 2017;18(2):S46–9.

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64. Prober CG, Kolars JC, First LR, Melnick DE. A plea to reassess the role of United States Medical Licensing Examination Step 1 scores in residency selection. Acad Med. 2016;91(1):12–5. 65. Boatright D, Ross D, O’Connor P, Moore E, NunezSmith M. Racial disparities in medical student membership in the alpha omega alpha honor society. JAMA Intern Med. 2017;177(5):659–65. 66. Chen AJ, Schwartz J, Kimball AB. There’s no place like home: an analysis of migration patterns of der-

matology residents prior to, during, and after their training. Dermatol Online J. 2016;22:6. 67. Witzburg RA, Sondheimer HM.  Holistic review -shaping the medical profession one applicant at a time. N Engl J Med. 2013;368(17):1565–7.

 

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Dermatoethical Challenges in Education of Medical Students & Dermatology Residents: Opportunities at the Bedside Ashley Myer, Cynthia Pathmathasan, and Eliot N. Mostow Contents Introduction – 402  art I. Role of Medical Students and Residents P in the Dermatology Clinic – 402  art II. Teaching Ethics in the Clinic to Residents and Medical P Students – 405 Opportunities to Teach Ethics in Dermatology Clinics – 406

Conclusion – 411 References – 411

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_38

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nnLearning Objectives 1. To recognize challenges to dermatoethical teaching of medical students and dermatology residents. 2. To develop a protocol for recording cases and other issues related to dermatoethics education during clinical dermatology training.

>>Points of Emphasis 55 Ethical issues arise in patient care when an attending physician is accompanied by a novice learner. Educating patients on the level of experience of all those involved in their care as well as the importance of training future physicians is imperative. Obtaining ongoing patient consent to allow novice physicians to participate in their care is necessary to ensure the competence of the next generation of dermatologists. 55 Ethics is historically taught in lectures and interactive sessions, but recognizing the potential value of addressing issues in clinic as they arise offers even more valuable opportunities for immediate dialogue and feedback that can benefit patients, students, residents, and attendings. 55 Creating a structured log for dermatoethics discussions will assist those interested in adding this teaching to their routine in medical education, clearly addressing a required Accreditation Council for Graduate Medical Education (ACGME) milestone, but also making the day-to-day practice of medicine more engaging for both teachers and students.

Introduction

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This chapter is divided into two parts. The first part is characterized by day-to-day ethical dilemmas that may arise while accommodating learners in the clinic. There is a mandate to educate the next generation of dermatologists. At the same time, patients have the right

to know the level of education, training and experience of all who are involved in their care. The ethical values of honesty and integrity must be upheld, and patient consent is required to allow medical students and residents to continuously participate in patient care. In addition to patient consent, learners must be aware of their limitations and learn to ask for guidance to protect patients from maleficence, or harm. The second part of this chapter characterizes novel ways to incorporate ethics training while interacting with students and residents in the clinic. Calling attention to and discussing ethical dilemmas as they arise in the clinical arena is the best way to maintain a mindful ethical practice and meaningfully teach ethics to dermatology residents and medical students.

 art I. Role of Medical Students P and Residents in the Dermatology Clinic Once the decision is made that students and/ or residents will be permitted to learn in a clinic, it is important to acknowledge the roles and responsibilities of these participants as well as those of the responsible clinician (also known as the attending). Most importantly, one must also include the patient and her family members as part of the educational experience. Some of the core ethical concerns that arise from this encounter between patients, physicians, students, residents, and other trainees involved are: (1) the question of the autonomy and consent of the patient, (2) the extent of the involvement of learners in direct patient care and (3) whether observation is sufficient or whether learners should be permitted to engage in hands-on experience. If hands-on experience is appropriate, how much and how to supervise? The following case studies demonstrate potential day-to-day ethical dilemmas regarding the involvement of trainees in patient care.

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Case Studies

Case 1: (adapted from [1]) A senior medical student who is interested in applying for dermatology residency is rotating at an academic outpatient dermatology clinic. The student is instructed to evaluate a 70-year-old male patient unsupervised. The patient says he is there because his daughter is concerned about spots that might be skin cancers and is pleasant and quite sure his daughter is worried needlessly. The majority of the lesions are waxy, stuck-on appearing brown lesions with a few on the lower back that are peeling off from rubbing (the patient admits they are irritated and itchy). Eager to please the patient and impress the attending dermatologist, the student is confident that lesions are seborrheic keratoses, and treats four of the presumably irritated lesions with liquid nitrogen. After reporting this to the attending physician, they go to see the patient together and one of the just-treated lower back lesions, already red and swollen from cryosurgery, is concerning clinically for an atypical nevus or possibly a melanoma with asymmetry and irregular pigment. There is also one shiny pigmented lesion on the right upper back that is suggestive of a pigmented basal cell carcinoma. The patient had been quite pleased with the medical student, but is now anxious about his experience in the dermatology clinic because he is told he will need to return to re-evaluate the back lesions after the cryotherapy-­ induced changes resolve so that biopsies of the two suspect lesions can be done. Guiding ethical values to consider regarding Case 1 1. Patient autonomy and informed consent regarding the procedure 2. Beneficence and non-­maleficence of the attending physician and the medical student 3. Honesty and integrity of the medical student 4. Ethical handling of medical error Ethical questions to consider regarding Case 1 1.  How should the medical student be informed of these issues? Should the

patient be present during the educational intervention or not? 2. How should the patient be informed of these issues? Should the attending physician explicitly and transparently acknowledge the error and plan to follow up or subtly suggest that follow-up to re-­ evaluate ought to take place in a few weeks to reassess these lesions? 3. Should the attending always accompany a medical student in an exam room and be present for each step of the encounter? If not, what are the criteria for the attending accompanying a medical student throughout the encounter (e.g. severity of condition, complexity of case, patient willingness, etc.)? Case 2 A male third-year medical student “shadows” a male attending clinician who performs a total body skin exam on a female patient (with a female medical assistant present as a “chaperone). Even though the patient has agreed to have an observer in the room during the exam, while the clinician is focusing on the patient, the student uses body language and facial expressions that make the patient uncomfortable. However, the clinician does not see the student at this moment and does not perceive the patient’s distress. The patient doesn’t say anything then but continues to think about the visit. Later, she posts an online review that suggests the physician is insensitive and that patients should avoid that practitioner. Guiding ethical values to consider regarding Case 2 1. Informed consent and autonomy as an ongoing process, not a static “set-instone” agreement 2. Non-maleficence Ethical questions to consider regarding Case 2 1. How does the clinician most appropriately assess the impact of having an “observer” in the room for each patient?

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2. How does the clinic allow for patients to say “no” before and during an encounter that includes a learner? 3. How does the clinician best respect patient autonomy and assess for patient concerns before the patient leaves the office (and later chooses to criticize the clinician online)?

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denying the benefits of training to future generations of patients. Despite this, physicians should attempt to provide unbiased information to patients regarding the important of teaching trainees, in order to elicit voluntary participation of patients in medical training [2]. Unfortunately, patient autonomy may conflict with the ethical principle of justice, as some individuals may only have access to facilities in which trainees are inteDiscussion gral to delivering care, while other wealthier indiEthical principles and theories to consider viduals with better access to private healthcare regarding these dilemmas include beneficence, may be more likely to refuse care from trainees. Another aspect of patient autonomy is nonmaleficence, utilitarianism, justice, patient autonomy, and informed consent. The bioethi- informed consent. It is crucial to remember that cal principles of beneficence and nonmaleficence informed consent of the patient is not irrevocaare relevant due to the responsibility of the ble but is an ongoing negotiation that can be attending physician to act for the benefit of withdrawn at any time throughout a clinical patients and the responsibility to avoid harm. encounter or a research study. Although it may However, while a current patient could possibly benefit the education of the trainee, physicians be harmed by the presence of a student due to are not entitled to “use” the patient’s body lack of training and experience, the attending against her will. Despite this, physicians should also has a duty to teach future physicians core aim for adequate education of patients regardcompetencies of dermatology for the sake of ing the importance of medical education coutheir future patients. Future physicians acting pled with their care. There is a general consensus with beneficence are required to learn to compe- among medical educators that trainees should tently provide medical care [2]. Interestingly, participate as much as reasonably possible in teaching hospitals and clinics do not have higher patient care with appropriate supervision and rates of medical error or mortality than non-­ education of patients about the benefits of parteaching hospitals, possibly due to the fact that ticipation whilst addressing pertinent concerns. In Case 1, the medical student should not supervising physicians are constantly forced to justify their decision making and thought pro- have administered treatment for the assumed diagnosis without having confirmation by the cesses in the presence of a trainee [3]. One could argue by extension that since responsible attending physician and being authoteaching hospitals and non-teaching hospitals rized to proceed under appropriate supervision. have similar rates of medical error and mortality, Significant harm might have been done to the there is an ethical obligation to provide hands-on patient at the hands of the medical student, and experience to dermatology trainees and that under the “captain of the ship” doctrine, by the observation alone is not sufficient. From the attending as well. Additionally, it is unclear utilitarian perspective, it could be inferred that whether the patient was aware that the healthcare although one patient could theoretically suffer provider in the room was a medical student and harm (statistically no more likely than if a trainee not a practicing dermatologist. Ideally, the mediwas not involved), future generations of patients cal student should have identified herself as a would benefit from hands-on training. On the medical student to the patient (and worn approother hand, patient autonomy needs to be priate badge identification), asked pertinent quesrespected and upheld. Patients should be allowed tions and performed a physical exam, then to refuse the presence of a trainee in a room, presented to the attending her presumptive diageven though it may theoretically cause harm by nosis. Based on the principle of autonomy, the

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patient had a right to know the status of the person administering treatment. In addition to this being a teachable moment, the attending physician has an ethical obligation of truthfulness to disclose the error to the patient immediately and transparently. Appropriate follow-up to re-evaluate the patient’s suspicious lesion should be arranged to best accommodate the patient’s schedule, and the attending should take administrative steps to ensure being notified if the patient does not return as scheduled. The lesion suspicious for a pigmented basal cell carcinoma is easier to address with a biopsy during the current visit, but a clear and positive statement about the benefit of more experienced eyes, and even a discussion about the potential for misdiagnosis even by experienced physicians may be worthwhile. The presence of the medical student in the room during the disclosure of the medical error would provide an uncomfortable teaching moment for her, but perhaps one that is necessary to learn and grow as a physician-intraining. The student, however, should not be chastised in front of the patient as that might be emotionally upsetting to the patient (and lead to future distrust of the healthcare system) and would be counterproductive educationally for the student. The student obviously requires counseling but not intimidation in front of the patient. While an ideal world might allow for an attending to accompany a student in all steps of clinical encounters, this is usually not practical. Additionally, medical students must become comfortable entering a patient’s room

 art II. Teaching Ethics in the Clinic P to Residents and Medical Students To cover the 15 essential topics of ethical in dermatology in a three-year residency, an ad hoc subcommittee of the American Board of Dermatology prepared a voluntary curriculum designed to meet the professionalism milestones of the Accreditation Council for Graduate Medical Education (ACGME), to be taught in 60-minute sessions approximately every other month [4, 5]. Additionally, resi-

alone, without an attending present. Physicians should not always have to accompany trainees into exam rooms, but trainees must become accustomed to admitting their inexperience and acting with honesty and integrity. The medical student in this case should have presented her findings to the attending dermatologist and confirmed the diagnosis and discussed treatment options and learned why empirical cryotherapy could alter the histopathology of the suspect lesions. In the Case 2, the attending physician should have communicated better to his patient. He should have explicitly stated that the patient could revoke her agreement for the medical student to observe at any time during the encounter. He also should have made it clear that her comfort and health is of the utmost importance. Ideally, after the exam was over, the patient could have explained why she felt uncomfortable with the medical student present, and it would have provided a teaching moment for the medical student, albeit an uncomfortable one. However, this might have compounded the patient’s discomfort. While most patients should be educated on the importance of medical education and presence of trainees in the clinic, a full skin exam with two members of the opposite gender is a particularly risky scenario. Ideally, the attending physician would have noticed the patient’s discomfort during the examination, but depending on positioning, this might not have been possible. In this case, patient autonomy and comfort should take precedent over medical education.

dents may take elective coursework or gain additional knowledge through clinical electives. However, we believe it is advantageous to also incorporate teaching dermatoethics into the clinical setting rather than only engaging with ethics every other month or less in didactic sessions. In an outpatient setting, there are many opportunities to discuss ethical issues such as physician-patient-industry relations, encounters with pharmaceutical representatives, patient autonomy, and institutional/organizational ethics [6]. Additional

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time could be spent focusing on case-based scenarios and discussion, concentrating on the quality of the discussion and justification for reasoning through ethically difficult areas. Opportunities for ethical discussion arise often in outpatient settings and must be taken advantage of, as they have limited impact on clinic efficiency and many patients feel that taking the time to discuss ethics contributes to patient care.

 pportunities to Teach Ethics O in Dermatology Clinics In the midst of a busy clinic with patients coming and going, harried medical students, residents and attending dermatologists trying to remain on schedule while teaching therapeu-

tics, procedures, and differential diagnosis, it is small wonder that teaching and modeling ethics and professionalism “take a back seat”. Yet it is in the clinic, including the private practice setting, where the ethical and professional challenges most germane to dermatologists are encountered in very direct and immediate ways. At this stage of their careers, medical students and residents gain the most from training in ethics. It is the role of the seasoned dermatologist acting as teacher and mentor to seize the opportunity to initiate dialogue about the ethical aspects of the clinical situations whenever appropriate, including situational feedback, especially related to medical errors, as appropriate [7]. No textbook or hypothetical scenario can educate as well as an actual ethical dilemma encountered directly and addressed by the trainee.

Case Scenarios

Case 3

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An attending dermatologist sees a patient with a medical student. The patient has psoriasis involving 35% of the body surface area, including the face, that has been refractory to multiple topical treatments and systemic treatment with methotrexate. Phototherapy was not practical and systemic retinoids are contraindicated due to comorbid hyperlipidemia. The physician educates the patient on biologic agents such as adalimumab, secukinumab, and ustekinumab, citing their proven efficacy for severe psoriasis in comparison to his previously used agents. The patient has previously expressed difficulty affording medications, but the hope is that the pharmaceutical company promotions related to these newer drugs will make the patient’s out-of-pocket expenditures reasonable. Unfortunately, the patient has just become 65  years old and Medicare is now his primary insurance. As of 2020, that makes him ineligible for pharmaceutical company “copay-reduction” programs. After the dermatologist explains the risks and benefits, the patient requests the drug with the longest duration of action with the best chance of success. The staff and patient fill out the requisite paperwork for adalimumab

after appropriate laboratory screening, but the patient learns that the out-of-pocket cost will still be several thousand dollars per year; he states he cannot afford it. The physician investigates the cost of two other classes of medication (secukinimab and ustekinumab), but the end result is the same. In the meantime, over several weeks of handling paperwork and patient calls, the patient’s psoriasis is getting worse, he is getting frustrated and angry at the office staff and his Medicare carrier, and the staff are getting frustrated by all the time being spent without successfully addressing the patient’s concerns. Patient assistance funds are also considered and applied for, but the patient is just above the threshold required to meet qualifications for three separate programs. The pharmaceutical representatives from multiple companies have frequently offered to provide samples of medication for patients who cannot otherwise get treated, but the physician has been reluctant to accept these offers. Finally, however, a call is made to the local sales representative for ustekinumab, which only requires only 4 injections per year, and the patient is started on ustekinumab with shipments of the product to the dermatologist’s office and ad-

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ministered by the staff at no out-of-pocket cost to the patient for the product. Over the next 6 months, the patient’s psoriasis improves dramatically, and the patient, staff and physician are all relieved. The medical student and physician realized there are many potential areas for ethics and professionalism discussion in this case including: 55 Patient autonomy with respect to choosing treatments that fits his lifestyle, risk tolerance, and budget 55 Issues related to insurance (or lack thereof) that affect the patient’s ability to afford medications 55 Cost considerations that go beyond consideration of the immediate patient. That is, accepting samples ultimately costs the pharmaceutical company and will inevitably lead to higher costs for other patients over time. Does beneficence toward the patient trump utilitarian concerns? 55 The importance of informing patients of all available treatment options. 55 Discussions about the time and effort required to get this patient treated successfully (hassle factor for the practice and patient welfare) 55 Considerations regarding legal and political issues that make co-pay assistance unavailable for patients on Medicare 55 Discussions about patient satisfaction, rating physicians based on patient satisfaction, and reputation management companies 55 Discussions about drug costs, whether or not the patient will be able to afford continued use of the medication if and when sampling programs are discontinued, and discussions about “biosimilars” that may become available at reduced cost As an enhancement to office-based ethics discussions, the student and physician can utilize a checklist/table (. Tables 38.1 and 38.2) to remember the case, quickly ­consider points for discussion, and provide fodder for later consideration of the issues involved.  

Case 4 A patient with recently diagnosed amyotrophic lateral sclerosis (ALS) presents with a shiny bump

on his nose. He has a history of two previous basal cell carcinomas, both treated surgically. Clinical evaluation suggests basal cell carcinoma. The patient relates that he probably only has a 2to 3-year life expectancy and asks whether or not he needs to have this lesion biopsied and treated. The physician decides to sit with the patient and his wife (recognizing that the clinic will run behind even more that day), expresses sincere sadness for the recent diagnosis while acknowledging the honor of taking care of them and discusses with them the multiple treatment options (including no treatment). Diagnostic and treatment options were reviewed efficiently and effectively since the patient was already familiar with treatments for basal cell carcinomas. After considering surgical, radiation, and systemic/topical chemotherapy options, and acknowledging that the diagnosis was just clinical at this point, the patient (with his wife involved) insisted on a trial of topical 5-fluorouracil to be used over the next several months without a confirmatory biopsy. The medical student and physician realized there are many potential areas for dermatoethics discussion in this case including: 55 Discussion of respect for the patient’s autonomy. In this case, the patient has decision making capacity, has had previous basal cell carcinomas so understands the treatment options and risks, and he is present with his wife whom he knows will become his significant caregiver in the next few years. Even though a biopsy and subsequent surgery are probably the most expeditious options in the patient’s mind, these are not what the patient wants in his present circumstances. 55 Discussions about treatment options that go beyond “usual” protocols and frank discussions about risks and benefits of treatments in any situation 55 Consideration of empathy and caring in a busy dermatology clinic. Discussion regarding the ethics related to taking extra time with this patient, potentially jeopardizing the efficiency of the clinic as a whole because of these discussions, and how he chooses to engage with patients related to difficult medical or social issues in their lives

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55 Discussions about medical errors. What are the chances that the clinical diagnosis might be wrong, and if this were a squamous cell carcinoma or perhaps an amelanotic melanoma, would that make a difference in the discussion? 55 Discussions about the costs of medical care at the end of life as it relates both to the patient and to society in general 55 End-of-life issues and patient dignity even though the dermatologic diagnosis will not be the cause of the patient’s demise Discussion

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The opportunity for students to learn professionalism and ethics at the bedside is invaluable to both the clinical teacher, medical student and resident. Ethical discussions can often lose sight of clinical relevance and the realities of patient care utilizing fabricated cases in a lecture hall removed from a clinical setting. When time is taken to discuss circumstances and dilemmas in the moment, students are given the ability to learn from their instructors as role models and to ask pertinent questions with the care of the patient directly in mind. Instructors benefit from their actions being challenged, as well as real-time self-analysis of their ethical reasoning and judgment and the consequences for patient care, themselves, and the organization in which they work. Engaging students in an educational dialogue will have a positive impact on the professional and ethical development of trainees, which is a core competency of all residency programs. The questions posed in Case 3 allows the dermatologist to address the principle of beneficence. Severe, persistent psoriasis that remains refractory to treatment has negative implications on the patient’s health both physically and psychosocially due to its pruritic, occasionally painful and disfiguring nature and the effects of chronic inflammation on comorbidities. This requires the physician to consider the ­principle of beneficence and non-maleficence by weighing the risks and benefits of each available treatment. Likewise, the physician must take into consideration the financial issues for

the patient and society as a whole. Physicians, insurers, and pharmaceutical companies are integral parts of the healthcare system in the United States and most developed countries. While it is reasonable to assume there are no “quick fixes” to problems associated with any healthcare system, some level of understanding about the associated costs and complexities seems reasonable. As noted above, issues related to politics and the law can also be appropriate for ethics discussions. Finally, the role of accepting samples from pharmaceutical companies and the ultimate impact this has on costs borne by other patients and third-­party payors should be considered and discussed. The attending physician therefore fulfills his duty of beneficence by providing the patient with free samples of ustekinumab to see if there is sufficient symptom relief for his patient. After assessing the therapeutic efficacy of the biologic drug, the physician can either seek financial assistance for the patient to supply him with more medication, obtain more samples if possible or consider another biologic agent. This scenario provides the patient with a trial of the drug without a financial commitment. Because the patient has been refractory to other treatments, the physician can reach out to the company and request additional information concerning its assistance fund. Although applied for and denied once, perhaps the company will change its criteria for assistance (or the patient’s financial situation will have changed) in the future. In cases like these, the physician is able to demonstrate his ability and willingness to advocate for his patient to pharmaceutical and/or insurance companies, bridging the gap between the patient and adequate care, and fulfilling the principle of justice. Patients with ALS such as in Case 4 (loosely based on an actual case) have an average predicted life span of 2–5 years after diagnosis [8]. When addressing treatment of this patient’s probable basal cell carcinoma, the dermatologist must consider the principle of beneficence and weigh the associated risks and benefits of the likely basal cell carcinoma treatment. For most terminally ill patients with non-melanoma

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skin cancers, dermatologists will recommend a nonsurgical intervention due to the usual slow growth of these cancers. However, at the time of this visit, the patient was doing relatively well with mostly minor symptoms and was able to make his own medical decisions as mental clarity and decision making are not compromised by the motor neuron disorder. Most patients will face death from complications associated with ALS prior to suffering morbidity related to the basal cell carcinoma. For this reason, it is sometimes appropriate for the patient to refrain from significant or aggressive treatment or intervention, avoiding any sort of complication, discomfort or disfigurement associated with surgery or radiation or even topical treatments. At the same time, the physician discusses treatment options that might be considered including topical 5-fluorouracil or

imiquimod; the patient and his wife decided that topical 5-fluorouracil made sense to them with the option to stop if the treatment became too uncomfortable. Autonomy and beneficence were prime components of this discussion, though beneficence might be a significant concern since 5-FU used without a biopsy on a basal cell carcinoma on the nose is certainly not standard-of-care and many physicians would not regard it as beneficent, despite respecting patient autonomy. This was expressed explicitly, the discussion documented, and more frequent follow-up agreed upon with knowledge that treatment plans could change to more definitive treatment later. The incurable and relentlessly progressive nature of ALS, combined with the patient’s strong desire for autonomy in “doing it his way”, led to a degree of flexibility on the part of the dermatologist.

..      Table 38.1  Form to be used in clinic to quickly record information including patient ID (medical record number) for later reflection and review and discussion Diagnosis Brief description of condition(s)

ID

Autonomy

Justice

Beneficence

Non-­ maleficence

Comments

Patient medical record number for future retrieval and reflection while preserving patient privacy

Reflect on aspects of case that address: – Informed consent – Right to informed decision and choices concerning medical, psychosocial, and financial health

Reflect on aspects of case that address: –E  qual distribution of resources, medications, interventions among patient population

Reflect on aspects of case that address: – Physician education of self and patient on available interventions to thoroughly inform them regarding risks and benefits – Weighing risks and benefits of medications, interventions, and other forms of treatment – Risks and benefits on an individual vs. population level

Reflect on aspects of case that address: – Physicians duty to do no harm to patient, physically, psychosocially, and financially

List overview of steps learned from case or additional notes that serve as memory stems for future reference

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ID

Case 3

Case 4

Diagnosis

Severe Psoriasis of Medicare Patient

Basal Cell Carcinoma Amyotrophic Lateral Sclerosis (ALS)

– Check mental status of patients with neurodegenerative or chronic illnesses to ensure they are making an informed decision – Right to make educated decision to accept or deny treatment of nonmelanoma skin cancer upon being informed of available options, risks and benefits

– Equal distribution of healthcare, medications, and interventions amongst all patients regardless of expected life span – Equal distribution of time in clinical setting addressing medical and psychosocial hardships of neurodegenerative illnesses for not only patient but caregiver as well

– Equal distribution of healthcare, medications, and interventions amongst all patients – Impact treatment of one patient may have on regional, national, international levels

Justice

Table 38.1 and text)

– Right to information regarding condition, available treatments, associated risks and benefits (informed consent) – Right to choose treatment that best fits medical, psychosocial, and financial aspects of life

Autonomy

..      Table 38.2  Example of completed form (see

– Physician and family forced to weigh benefits of biopsy/treatment of slow growing cancer and risks of interventions on atrisk population – Sacrifice of physician time and potential efficiency of entire clinic to address multifaceted issues faced by couple. Benefit of providing support outweighs cost of time

– Balance medical, psychosocial, and financial costs of treatment with biologic agents vs. withholding treatment

Beneficence

– Caution when treating terminally ill patient at risk for complications – Avoidance of further harm by addressing all aspects of illness in empathetic manner

– Duty to do no harm to individual by delaying effective treatment of patient due to cost – Duty to do no harm to population via distributing samples, increasing costs of pharmaceutical companies→other patients

Non-maleficence

1. A  ddress physical and mental health of patient as well as concerns by both patient and caregiver (acknowledge and empathize) 2. E  ducate and reassure patient on benign nature of mass 3. E  ducate patient and caregiver of skin cancers, available tests and treatments, risks and benefits for ALS patient 4. R  espect patients right to informed decision and move forward accordingly

1. S  urvey available medications and interventions 2. E  ducate patients on available options, risks/benefits, costs 3. E  stablish financial status of patient (Private insurance, Medicare, Medicaid) 4. C  onsider financial assistance program by pharmaceutical company if applicable 5. R  each out to drug representatives for samples if care of patient is delayed

Comments

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Conclusion

References

Ethical dilemmas are not always apparent and clear, particularly for trainees who are unfamiliar with the intricacies of day-to-day patient care. By taking the time to discuss ethical issues in real time, clinicians have the ability to not only identify pertinent ethical issues, but to discuss their thought processes and realistic limitations that they face on a day-to-day basis. These four cases are examples among countless potential cases for consideration. In verbalizing his approach to patient care with a student, the physician can justify his actions utilizing ethical principles and theories, directly demonstrating how to best apply seemingly abstract concepts to real-­world clinical situations. Facilitating a dialogue to teach ethics to medical students and residents concurrently is an invaluable experience that should be utilized, as it will both aid in the development of ethical and professional future clinicians and ensure that ethical and compassionate care in the best interests of the patient is achieved. The checklist/tables provided (. Table  38.1 for a sample blank form with prompts and . Table 38.2 for a form completed on Cases 3 and 4) illustrate the usefulness of this format in stimulating more focused discussion.

1. Hussain A, Grant-Kels JM. The emboldened medical student: ethical dilemmas in a university clinic. J Am Acad Dermatol. 2019;81:284–6. 2. Tassavor M, Grant-Kels JM. “The student is in”: ethical concerns when dermatology patients refuse medical students. J Am Acad Dermatol. 2018;78:1026–8. 3. Papanikolaou PN, Christidi GD, Ioannidis JPA.  Patient outcomes with teaching versus nonteaching healthcare: a systematic review. PLoS Med. 2006;3:e341. https://doi.org/10.1371/journal.pmed. 0030341. 4. Stoff BK, Grant-Kels JM, Brodell MD, Paller AS, Perlis CS, Mostow E, et  al. Introducing a curriculum in ethics and professionalism for dermatology residencies. J Am Acad Dermatol. 2018;78:1032–4. 5. Recommended topics for 3-year dermatoethics curricular cycle. https://www.abderm.org/residents-andfellows/dermatoethics.aspx. Accessed 7 June 2020. 6. Aldrich NZ, Mostow EN.  Incorporating teaching dermatoethics in a busy outpatient clinic. J Am Acad Dermatol. 2011;65:423–4. 7. Cossman JP, Wang M, Fischer AA.  Supervision, autonomy, and medical error in the teaching clinic. J Am Acad Dermatol. 2018;79:981–3. 8. Raymond J, Oskarsson B, Mehta P, Horton K. Clinical characteristics of a large cohort of US participants enrolled in the National Amyotrophic Lateral Sclerosis (ALS) Registry, 2010-2015. Amyotroph Lateral Scler Frontotemporal Degener. 2019;20(5–6):413–20. https:// doi.org/10.1080/21678421.2019.1612435.

 

 

Conflicts of Interest  The authors have no relevant conflicts of interest to disclose.

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The Cost of Free Cosmetics: When Training and Capitalism Collide Travis W. Blalock Contents  he Cost of Free Cosmetics: When Training and Capitalism T Collide – 414 The Setting – 415 The Patient – 416 Medical Industry – 417 Educators – 418 Trainee – 419 Conclusions – 420 References – 420

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_39

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nnLearning Objectives

1. To understand the ethical and moral arguments in favor of using industry-provided products for training of physicians in residency. 2. To describe the ethical and moral arguments against using industry-­ provided products for training of physicians in residency. 3. To recognize the ethical and moral arguments for and against providing reducedfee pricing for patients when training physicians in aesthetic procedures.

>>Points of Emphasis 55 Aesthetic procedures are an integral part of post-graduate training in dermatology, but the materials often required to achieve competency with these procedures are cost prohibitive for many academic programs. 55 Companies provide devices and products at no or reduced cost so that trainees can learn how to use them. 55 National and/or institutional regulations governing interactions between companies and trainees may impede these arrangements. 55 Ethical considerations include power dynamics in the treatment of vulnerable populations, patient safety, and conflict of interest.

 he Cost of Free Cosmetics: When T Training and Capitalism Collide

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The interaction between physician trainees and patients has long undergone scrutiny as the two potentially vulnerable groups interface. By virtue of their professional role, physician educators have become the arbiters who have the capacity to tilt the scales in order to assure that both stakeholders (trainees and patients) are treated equitably. There is an expectation that patients are not placed in situations where health or safety is compromised by care at the hands of the inexperienced, while simultaneously ensuring that physician trainees are put in situations where they have the opportunity to successfully

learn and train in both routine and challenging situations. This complex relationship between educator, patient, and physician trainee is further complicated by the juxtaposition of other stakeholders including pharmaceutical companies as well as companies manufacturing light or energy-based devices, which will be referred to collectively as ‘medical industry’ for the remainder of this chapter. This challenge is overtly apparent in dermatology as training in the specialty has evolved and expanded. In its earlier days, the specialty primarily focused on medical dermatology and syphilology. Training now spans the medical and surgical aspects of dermatology, in which aesthetics has gained a large footprint. Dermatology has positioned itself in the vanguard of cosmetic and aesthetic procedures— in their development, application, modification, and perfection. This can be appreciated as dermatologists have become trailblazers amongst other aesthetically focused subspecialties in research, publication, and education in these cosmetic procedures [1]. The scope of the dermatologic focus on aesthetics has expanded so much that exposure to aesthetic and cosmetic procedures is now required to meet the minimum educational requirements to complete an Accreditation Council for Graduate Medical Education (ACGME)approved dermatology residency programs in the United States [2]. Moreover, aesthetic and cosmetic procedures have become so numerous and complex that advanced postgraduate fellowships that solely focus on providing further education and mastery in these areas are now available. These fellowships provide an ever-expanding array of cosmetic procedures including laser and light devices, chemical peels, soft tissue fillers, neuromodulators, fat transfer, body contouring, facelifts, hair transplants and vein surgery, amongst many others. However, the importance of cosmetic and aesthetic training even within dermatology is questioned by some, as the aesthetic focus may come at the expense of medical training. Beyond the development of an aesthetic focus in dermatology, the provision of aesthetic medical care, along with the associated training, has similarly accelerated in other areas of healthcare including dentistry, nurs-

415 The Cost of Free Cosmetics: When Training and Capitalism Collide

ing, and podiatry as well as medical specialties like plastic surgery, otolaryngology, ophthalmology, gynecology and even primary care. Along with this diversity and expansion of medical personnel who desire to and, in fact, provide aesthetic care comes variable training and experience. As a result, procedures are commonly performed by providers with varying education and qualifications. Ultimately, that leaves the public and the profession in a quandary with a spectrum of providers, physicians and non-physicians, who deliver care with various levels of training, knowledge, experience, and skill, and often no way to differentiate skill and training levels among providers of these services. Regardless of who is getting trained, training in aesthetic procedures requires stakeholders with differing goals to interact. Conflicts can exist for the educator, the medical trainee, medical industry, and the patient. Ideally, when competing interests are managed in a way that does not disadvantage vulnerable stakeholders, these interactions can benefit all. However, failure to do so can place all participants at risk.

The Setting In medicine, and no less so in cosmetic dermatology, there is a general belief that patients receive optimal care from providers who are experienced and knowledgeable in the delivery of that care. With the assumption that experience in procedures results in more qualified and competent physicians, the challenge becomes even more obvious as an ever-­expanding array of procedures or products for aesthetic enhancement arrives on the market each year. It is impossible for dermatologist educators to be prepared, or even have the extensive experience required, to train every resident or fellow in every possible procedure. In fact, with many programs having limited resources and varying degrees of procedural skill and knowledge that can be offered, providing residents and fellows with sufficient exposure to develop comfort and confidence with these procedures can be challenging [3]. However, as noted above, there is a consensus among educators, accreditation agencies,

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and certifying boards regarding procedures for which proficiency, exposure, and knowledge are required to meet basic standards of training in dermatology. The challenges to provide this exposure reach even beyond the knowledge base and skill set of the educators. Medical industry, which creates unique and frequently updated products, is essential to providing the hands-­ on experience required. Lasers, injectable neuromodulators, soft tissue fillers, sclerosants, energy-based devices, and many other required resources from medical industry have significant price tags that preclude many academic centers being able to afford or provide these products for training. It would be financially unrealistic for most academic departments to obtain each and every type of energy-based device on the market with technology that is being updated frequently. Furthermore, it would be financially impossible for a department to be able to afford an endless supply of non-reimbursed injectable medication for physician trainees to achieve expertise on volunteers without alternative funding sources. These financial barriers can be a roadblock to training. Therefore, alternative solutions are needed to allow trainees to achieve sufficient training. Recognizing the limited financial resources of programs and the potential for significant gaps in knowledge and experience of graduates, solutions have been created to optimize how residents can obtain sufficient hands-on training. Medical industry has created mechanisms to provide free, reduced-fee, or reduced-­ cost technology and medications in order to allow residents to overcome some of the financial barriers that impede hands-on experience in aesthetic procedures. This allows for developing comfort with a product/procedure and conceptually decreases risk to the patient after the resident achieves competency. Unfortunately, despite these resources, experience may be limited and inconsistent across institutions nationally [4]. While resources from medical industry provide opportunities for trainees to gain experience, knowledge and competency in aesthetic procedures, there are similar limitations and challenges both in the United States and abroad [5, 6].

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Medical industry has set up robust consignment programs to provide free product for residents and fellows to use. Those companies have very specific utilization requirements and seek to provide product so the residents can get significant hands-on experience. Ultimately, the goal for all stakeholders is to provide comfort, safety, and a good outcome for the patients while delivering supervised experience for physician trainees. However, there are specific barriers to the establishment of these programs, as academic centers must comply with Accreditation Council for Graduate Medical Education (ACGME) policies on industry interaction for residents and trainees. Furthermore, at the local level, there exist varying institutional policies regarding whether and how pharmaceutical companies interact and provide services, education, and/ or products/samples to residents [7]. In some academic settings, educators who provide the training are not employed by the institution but serve in a volunteer capacity to provide the training and care in their own private offices. In other programs, the educator is an employee of the academic center and provides the education and care in the institutional setting with its associated rules and regulations. The way patients are selected is equally variable. In some circumstances, the recruited patients are known “friends and family”, where comfort with the care providers is likely already established. In other settings, the patients are recruited based on cosmetic desire or the financial appeal of reduced-cost services. In some programs, the trainees utilize the lasers and injectables on each other. As noted below, these distinctive settings significantly impact the ethical considerations. As one looks at these intersecting stakeholders (patients, physician trainees, educators, medical industry), it is easy to see how these interactions can create a desirable outcome. Physician trainees obtain the skill set and knowledge base required to provide safe quality care. Patients have the opportunity to contribute to medical education as well as obtain care with less out-of-pocket burden. The medical industry is able to contribute to the education of physician trainees who will likely be using the product (and contributing

to the medical industry bottom line) in the future at no financial cost to the education system. Educators are able to provide the required knowledge and hands-on training to provide competency in required procedures while gaining access to new and updated products. However, small changes in any of the settings, variables, or stakeholders can call into question beneficence.

Questions for Discussion

55 As educational and regulatory requirements change, how can guidelines be created to meet the objectives of all stakeholders? 55 Is it possible for all stakeholders to find equitable value in settings where residents provide free/reduced cost aesthetic procedures? Is it even possible to compare the outcomes of the stakeholders? 55 Can educational success and pharmaceutical regulation coexist with patient success when patients are given free/reduced care aesthetic procedures? If, so, does there have to be a good patient outcome in all situations for the collaboration to be considered successful?

The Patient Let us next consider the patient. Regardless of all of the other stakeholders involved, the patient is the ultimate driver of this complex relationship. The safety of the patient is of primary importance from the perspective of the educator, the trainee, the company that manufactures the product or device, and, of course, the patient. All participants lose something if patients cannot get treatment in a setting where safety is prioritized while also trying to achieve a desired aesthetic outcome. Adding to the complexity, the point of contact for each can sometimes alter the ethical considerations. As noted above, medical industry is willing and able to provide free product/technology for educators and train-

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ees. However, patients are commonly recruited from a select group of family, friends, coworkers, and patients who otherwise would not be able or willing to pay the high cost associated with obtaining cosmetic procedures. This places those patients in a power dynamic that is very different from the patient in the standard clinical setting. Family members and fellow trainees (who have a personal connection) may be willing to place themselves in the hands of a less experienced physician to obtain the product at decreased cost, with some understanding of the risk. Patients with limited means or simply looking for cost savings may also be willing to place themselves in the hands of a less experienced physician to obtain the product at reduced cost. These patients are potentially more vulnerable as they prioritize an objective cost over a subjective, and many times unknown, risk of care by a less experienced physician trainee. Add patients who are addicted to cosmetic procedures, and the vulnerability and complexity of these interactions becomes more apparent. Does this mean that some patients may be more vulnerable to getting substandard treatment? Is it just that some patients are getting discounted care? Does this mean that the patient is at higher risk for complications? Are the educational system and medical industry unwittingly setting up a system that discriminates and takes advantage of people who do not have the financial means to otherwise obtain these procedures? What is apparent in these scenarios is that often patients’ goals are wide-ranging and may lack certainty or clarity. Their autonomy may be constricted by the lure of reduced-cost aesthetic procedures. In other words, these patients may be so focused on the desire for cosmetic improvement or cost savings associated with the procedure that they cannot adequately assess risk and beneficence. On the other hand, some patients may very well understand the implications of a possible increased risk but, despite this, seek out reduced-fee products/procedures. However, the education and experience of their care providers may also be important to the patient. Multiple studies have indicated that experience, qualifications, and education are important when it comes to who provides

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care, especially aesthetic care [8]. A recent study has highlighted a concern from patients and physicians regarding the safety of non-­ physician clinicians who perform aesthetic procedures [9]. Rossi et al. suggest that oversight and regulatory improvements are warranted to optimize delivery of safe cosmetic procedures [9]. Ultimately, this highlights the need to focus on protecting the welfare of the patient by ensuring safe delivery of care within the medical education system.

Discussion Questions

55 How can we ensure the patient isn’t taking advantage of the resident physicians or medical industry? 55 Does patient autonomy allow prioritization of aesthetic and financial benefit over health? 55 Do patients truly understand the risks involved with some of the decisions that they make regarding their healthcare? 55 Can providers mitigate that risk on behalf of the patient when they have a conflict of interest related to education or industry?

Medical Industry Medical industry has long had a complex symbiotic relationship with academic medical centers. In fact, in the past few decades, despite the realization that a significant portion of technology transfer flows to, and a significant amount of research support flows from medical industry, universities and academic centers have made a strong push to avoid the appearance of impropriety. Many academic centers have discontinued accepting or distributing pharmaceutical samples and no longer allow their employees, physicians, and/or trainees to attend pharmaceutical company-sponsored events including dinners with speakers and lunches with product information. As noted above, the ACGME has principles guiding these interactions with industry, and institutions have their own policies. Educators, physicians, and train-

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ees have their own varying opinions about how these interactions should occur and what benefits they provide [10]. Despite this, when it comes to cosmetic training, many academic centers are typically willing, at least on a practical level, to accept free product/services to train residents. This may come in the form of bringing lasers for residents to trial or sending vials of medication for residents to inject. This gives the academic program the ability to provide required educational hands-on experience with limited financial impact. Both the academic centers and medical industry would argue that increased utilization of their products will likely result in improved quality and safety. Dermatology educators paradoxically try to maintain the appearance of independence while simultaneously taking advantage of the relationship with the medical industry. Medical industry is content to advocate for safe and skillful use of their products, which ultimately results in increased sales. While business ethics is not the primary focus of this discussion, some inequities exist in the ability of all companies to provide free product or technology. Better established and resourced companies simply have the ability to provide products and technologies to trainees more readily than smaller or less financed companies. This capitalistic reality skews the exposure of trainees to some companies’ products and devices over others. While education in the use of established products and technology results in trainee and educator comfort, there is a tendency for inequity in that trainees are not exposed to or getting sufficient training on a more diverse set of procedures. Discussion Questions

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55 Can we practically balance medical industry business goals with academic training facility educational (and fiscal) goals? 55 How does medical industry create scenarios for residents to achieve success in an endlessly diverse group of procedures while also maintaining a quantity of specific aesthetic experiences to become proficient?

Educators Faculty members who oversee use of these types of products and training sessions, as well as who have been trainees themselves, see many of the risks and benefits that come with reduced-price or free product. These situations benefit educators and trainees alike. They enable the next generation of trainees to be confident and competent in the delivery of cosmetic and aesthetic procedures. Furthermore, it reinforces the opportunity for educators to stay up to date and proficient in the knowledge and skill base required to continue teaching and providing care at a high level. Educators do have an inherent responsibility to make sure that conflicts of interest, financial or otherwise, are managed among patient, trainee, medical industry, and themselves. Relationships can still exist between educators and medical industry. In fact, because of the unique situation of being at the forefront of educating the next generation, these relationships are all the more significant. Furthermore, beyond the educational or delivery of care components, the historical academic and research focus found in ­residency programs allows for a symbiotic relationship where improvements and discoveries are actively pursued. This augmented interaction between industry and educator gives the educator direct access to industry experts and resources that can amplify their own careers and expertise. The bolstering of these relationships has the opportunity to address one of the challenges that commonly affects residency programs  – untrained faculty in certain aesthetic or cosmetic procedures. Fortunately, volunteer faculty or adjunct faculty who are comfortable with cosmetic procedures can be brought in for handson training at some programs. Unfortunately, not all programs are equally resourced with access to educators who have the ability or knowledge base to teach residents. This may be due to knowledge gaps in the local dermatologic community, institutional barriers to getting volunteer faculty to interact with residents, or a host of other practical reasons. Regardless, ensuring that educators are themselves properly trained or prepared to educate is paramount to the success of these interactions.

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One last barrier that is infrequently discussed regarding free/reduced fee cosmetic training sessions is that they can have an economic impact on educators and other providers. When access to these sessions is not restricted, some providers may see these reduced fee/free clinics as competition with their own full-fee cosmetic practices. This may prove to be an obstacle for volunteer faculty to teaching dermatology residents (or non-­physician clinicians) as they may not be willing to train their competition. Moreover, the volunteer may not desire to train residents with patients who would likely otherwise seek compensated aesthetic care from the volunteer. Even faculty at academic centers may feel threatened by these sessions as the combination of bureaucratic regulations and free clinics decrease their potential cosmetic patient base. Ultimately, financial disincentives may impact the education offered at these reduced cost/free cosmetic sessions.

Discussion Questions

55 How do educators appropriately balance their conflicts of interest in aesthetic procedures with their need to educate trainees in diverse procedures? 55 What can be done to balance the educator’s obligation to teach cosmetics without allowing these sessions to compete with their patient base (or potential patient base)? 55 Should medical industry compensate academic educators for the training of physician trainees  with their product(s) ? 55 How can medical industry engage educators in a thoughtful way that safeguards the interests of the educators (volunteers or faculty) from the unintended consequences of their teaching?

Trainee In order for residents and fellows to attain skill in a procedure, live-patient, hands-on experience remains the gold standard.

Simulation allows trainees to focus on the technical aspect of the procedure, while not having to worry about poor patient outcomes if there is faulty technique [11]. While these alternative settings may prove beneficial, there is no substitute for hands-on training utilizing live patients in clinical settings. Fellowships are one avenue that offers more intense focus on specific or a wide range of procedures, leading to confidence, competence, and credibility [12]. Free or reduced-cost cosmetic procedures are other routes that increase opportunities for education by increasing the patient pool able to access cosmetic procedures, as well as the number of patients who would be willing to allow a trainee to provide the services. This gives trainees the opportunity to become sufficiently confident in providing the services/procedures prior to getting into an unsupervised practice setting. This achieves a “greater good” patient benefit while at the same time allowing the resident to develop expertise and experience. Furthermore, there are data to suggest that the safety achieved in resident clinics mirrors the national averages for other clinical settings [13]. Despite the greater good, trainees must be mindful of the principles of beneficence and non-maleficence when selecting patients for aesthetic procedures. There must be full disclosure of the mutual benefit that is being provided. While both trainee and patient generally benefit from their interaction, if there is a negative outcome, the patient is the most impacted. The trainee obtains valuable experience and learning even (some would say, especially) when there is a suboptimal outcome. While it may benefit future patients of the trainee, that individual patient suffers a sometimes permanent negative outcome. One could take the utilitarian ethics viewpoint that learning for the benefit of many at the expense of one is a justified. However, the concept of truly understanding and mitigating risk and negative outcomes, in all patient scenarios (even outside of the free cosmetic residency situations), is a daunting task for patients and providers alike.

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Discussion Questions

55 How can one balance the need for trainee experience and assuring patient safety? Is it even possible to assure patient safety? 55 How can one ensure the trainee is seeking out experience without taking advantage of the patient? 55 Should an individual negative outcome caused by a resident in training be attributed to inexperience or to the rare negative outcome seen with procedures in general?

Conclusions

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As with all ethical dilemmas, the determination of how a process should be handled, how an outcome should be achieved, or how a relationship should function involves moral principles that are in conflict. We have discussed above interactions that potentially result in great outcomes for all stakeholders when free product is provided for training. Patients, trainees, educators, and medical industry can all benefit from their interactions, but it will require a thoughtful approach to create ‘best practices’ that are flexible enough to overcome barriers that present themselves  [14]. Even subtle changes in how patients self-select to obtain free product, how residents seek out patients to assist in their training, how educators distance or associate with medical industry, and how medical industry advocates for its own priorities and goals can each challenge the beneficence, autonomy, justice, and non-­ maleficence that we seek out for the betterment of our patients and profession. There is an oft-quoted aphorism, “If there is no conflict, there is no interest.” While it may be impossible to totally mitigate the conflicts of interest that each stakeholder brings to the interaction (other than to initiate a Rawlsian ‘veil of ignorance’ thought experiment), each has the potential to create fruitful

interactions.1 We may not be able to eliminate the conflicts of all stakeholders, but continuing to discuss the interactions in thoughtful and upbuilding ways will give us the best opportunity to optimize the outcome for all.

References 1. Bangash HK, Eisen DB, Armstrong AW, Nelson AA, Jalian HR, Alam M, et  al. Who are the pioneers? A critical analysis of innovation and expertise in cutaneous noninvasive and minimally invasive cosmetic and surgical procedures. Dermatol Surg. 2016;42:335–51. 2. Reichel JL, Peirson RP, Berg D. Teaching and evaluation of surgical skills in dermatology: results of a survey. Arch Dermatol. 2004;140:1365–9. 3. Kirby JS, Adgerson CN, Anderson BE. A survey of dermatology resident education in cosmetic procedures. J Am Acad Dermatol. 2013;68:e23–8. 4. Champlain A, Reserva J, Webb K, Griffin D, Moy L, Joyce C, et  al. Cosmetic dermatology training during residency: outcomes of a resident-­reported survey. Dermatol Surg. 2018;44:1216–9. 5. Bauer B, Williams E, Stratman EJ. Cosmetic dermatologic surgical training in US dermatology residency programs: identifying and overcoming barriers. JAMA Dermatol. 2014;150:125–9. 6. Worley B, Verma L, Macdonald J. Aesthetic dermatologic surgery training in Canadian residency programs. J Cutan Med Surg. 2019;23:164–73. 7. Goodman RL. Medical education and the pharmaceutical industry. Perspect Biol Med. 2007;50:32–9. 8. Bangash HK, Ibrahimi OA, Green LJ, Alam M, Eisen DB, Armstrong AW.  Who do you prefer? A study of public preferences for health care provider type in performing cutaneous surgery and cosmetic procedures in the United States. Dermatol Surg. 2014;40:671–8.

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For those without a background in philosophy or metaethics, the ‘veil of ignorance’ is a thought experiment that is commonly associated with the writing of John Rawls, a prominent American philosopher, and used in understanding moral decision making. In this thought experiment, someone attempts to make a moral determination by attempting to understand everything they can about a moral decision, but they do not know which role they as an individual play. This attempts to eliminate any individual bias and allows each moral position/variable to stand alone without risk of outside influence.

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9. Rossi AM, Wilson B, Hibler BP, Drake LA.  Nonphysician practice of cosmetic dermatology: a patient and physician perspective of outcomes and adverse events. Dermatol Surg. 2019;45:588–97. 10. Korenstein D, Keyhani S, Ross JS.  Physician attitudes toward industry: a view across the specialties. Arch Surg. 2010;145:570–7. 11. Mitkov MV, Thomas CS, Cochuyt JJ, Forte AJ, Perdikis G.  Simulation: an effective method of teaching cosmetic botulinum toxin injection technique. Aesthet Surg J. 2018;38:NP207–12.

12. Saedi N, Dover JS, Arndt KA, Kaminer M, Rohrer TE, Poon E, et al. Why do a fellowship in advanced dermatologic surgery? Dermatol Surg. 2018;44:899– 902. 13. Qureshi AA, Parikh RP, Myckatyn TM, Tenenbaum MM.  Resident cosmetic clinic: practice patterns, safety, and outcomes at an academic plastic surgery institution. Aesthet Surg J. 2016;36:NP273–80. 14. Waldman A, Sobanko JF, Alam M.  Practice and educational gaps in cosmetic dermatologic surgery. Dermatol Clin. 2016;34:341–6.

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Scholar Table of Contents Chapter 40 Peering into Publication Ethics – 425 Chapter 41 Respect for Human Subjects: Ethics in Research Design – 433 Chapter 42 Conflicts of Interest – 445

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Peering into Publication Ethics Michael A. Renzi, Jr. and Warren R. Heymann Contents

Introduction – 426 Peer Review – 426 Anonymity and Bias – 426 Predatory Open Access Journals – 427 Other Issues in Publication Ethics – 428 S alami Slicing – 428 Plagiarism – 428 Ghost Writing – 429 Conclusion – 429

References – 431

© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0_40

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nnLearning Objectives 1. To understand the predatory designation of certain open access publications and how to identify these journals. 2. To identify current issues associated with the peer review bias with an emphasis on blinding. 3. To understand what constitutes salami slicing, plagiarism, and ghost writing.

Introduction Every academician is familiar with the dictum “publish or perish” in order to acquire professional prestige and academic promotion. In the race to produce as many publications as possible, or be the first to present a novel finding, authors are vulnerable to potential ethical lapses. Young authors can fall victim to the biases within the peer review system or succumb to the enticements associated with predatory open access journals. Plagiarism and salami slicing allow authors to rapidly produce numerous publications from a single study. Ghost writing takes the majority of the work out of an author’s hands while maintaining his name first on the byline. All of these issues threaten the integrity of medical ­literature  - academicians must be aware of these issues in order to effectively account for and combat them.

Peer Review

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In the era of evidence-based medicine, clinician trust in prominent online and print journals is essential. While each reader must evaluate the merit and quality of each manuscript, there is an inherent trust among readers in general that peer-reviewed publications offer valuable and accurate information [1]. As such, peer review is the cornerstone of scholarly publication, ensuring that new information has been properly vetted prior to dissemination [2]. The first major implementation of peer review was in 1731 by the Royal Society of Edinburgh for the assessment of manuscripts submitted for publication in Medical Essays and Observations [3].

Despite this early practice, peer review did not become widely accepted until the latter half of the twentieth century [4]. Now a major part of the submission process, peer review acts as the gatekeeper to publication in prominent journals. However, despite its longstanding utilization and crucial role, the peer review process is not without ethical pitfalls.

Anonymity and Bias For reviewers, bias is characterized as a subconscious prejudice that impacts objectivity. This may include bias regarding other authors, institutions, specialties or content [1, 5]. In the current peer review process for prestigious publications, reviewers are typically privy to authors’ names for the manuscript they are evaluating, while authors are blinded to the identities of the reviewers. This format is known as a single-blinded review. Comparatively, in a double-blinded review, neither the author nor the reviewer is aware of each other’s identity. Within scientific experimentation, researchers attempt to incorporate as much blinding as possible in order to mitigate any bias that may confound their results. Blinding is a key element of sound study design, yet it has not been implemented to the fullest potential within the peer review process [6]. In a single-blinded review, the potential for bias is great, especially in small, close-knit specialties such as dermatology. The prolific authors within academic medicine eventually become renowned as experts on a particular topic. Naturally, these experts are the first to be called upon as peer reviewers. However, these experts, especially in smaller specialties, typically have interpersonal connections with other investigators and are aware of the research endeavors of those investigators [7, 8]. As a result, in the current system, peer reviewers often have professional, perhaps even personal, relationships with the authors of manuscripts they are charged with critiquing objectively. Such familiarity within specialties is why double-blinding can only be successfully accomplished for 25–50% of manuscripts submitted for publication [8]. This makes impartial review

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difficult, opening the door for manuscripts to be accepted on the basis of author reputation or potentially rejected due to professional animosity [9]. In order to combat the latter, many journals often offer the option of recommending for or against a peer reviewer [10]. This may introduce further bias, as the authors can significantly reduce the chance of having a potentially adversarial reviewer. Research shows that manuscripts evaluated by a recommended reviewer are more likely to be accepted [3, 9, 11, 12]. Blinding and its effect on bias in the peer review process has been a topic of interest over the past 30  years, as many have attempted to assess its true impact. Ultimately, the results have been mixed - some studies show no impact of double-blinding while others demonstrate that author familiarity increases manuscript acceptance [5, 8, 9, 13]. Despite these mixed results, double-blinded peer review is the preference of most authors; however, implementation in major publications has been impeded by logistical constraints [5, 9, 14, 15]. It takes considerable resources to thoroughly scour manuscripts and remove any trace of author or institution identity. Adding such a burden to a system, which is already critiqued as slow and inefficient, is often impractical. Regardless of its flaws, the peer review system is indispensable in maintaining the veracity of scientific literature; most authorities conclude that editorial boards should continue to make every effort to optimize impartiality through blinding to the fullest extent possible.

Predatory Open Access Journals As competition for training positions, research funding and prestigious academic appointments continues to build, the phrase “publish or perish” has never been more relevant. With so many qualified applicants for training positions in dermatology each year, one major area for distinction is bibliometric data. For the young attending seeking to obtain funding for research, allocation can be greatly affected by a publication resume [16]. The virtual guarantee of publication is extraordinarily enticing for academicians and applicants.

As technology has advanced and the Internet has allowed for greater dissemination of information, open access journals developed as a way to ensure accessibility to scientific publications and shorter lag time to publication [17]. Despite these laudable goals, predatory open access journals - which charge large, often hidden fees, deploy aggressive marketing, and have limited quality peer review have become an offshoot. There are currently 8000 active predatory open access journals, which have joined the ranks of established peer reviewed journals. This has created a body of literature that threatens the medical and scientific community [4, 18]. While wide dissemination of research would typically be considered positive, there are significant flaws within the design of predatory open access journals [19]. Open access publications do not follow the traditional model of subscription fees or pay per download; rather they place the financial responsibility on the author via an article-processing fee. A major ethical violation of these journals is that the processing fees are often not disclosed upfront and authors are charged sums even exceeding $1000 once an article has been accepted. Should an author decide to retract the manuscript upon learning of this cost, some open access publications will charge over $400 in administrative fees [16, 20]. The business model for predatory open access journals, which derives all of its revenue from author publishing fees, incentivizes acceptance of as many manuscripts as possible to generate profit. In order to maximize this volume, journals will inundate academic physicians with daily solicitations, inviting them to submit, “whatever [they’d] like” for publication [21]. These solicitations entice academics with promises of fast turnaround from submission to publication. Any questions of illegitimacy are countered with promises of peer review and editorial oversight by prominent academics, many of whom are unaware that they are listed as editors [17, 22]. In 2013, Dr. John Bohannon sought to test the thoroughness of the peer review process at open access predatory journals and submitted a manuscript to 304 suspect journals, detailing research that he described as, “so hope-

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lessly flawed that the results are meaningless.” Any competent peer reviewer would have rejected this article, yet 157 of the journals accepted the manuscript [23, 24]. Bohannon’s research highlights that the true threat of predatory open access journals is more than hidden fees, but rather endangerment of the integrity and validity of the information physicians or scientists use when treating patients and/or advancing medical knowledge. The National Library of Medicine has been diligent in depriving predatory journals of inclusion from databases such as PubMed, preserving the reliability of the indexed scientific/medical journals [24]. The predatory open access publications pose a threat to young physicians. Academicians should avoid contributing to these journals and be vigilant in their critical appraisal of editorial policies. Authors should be skeptical of open access journals and ask the questions listed in . Table  40.1 before submitting to any online publisher.  

..      Table 40.1  Author considerations when submitting to an open access journal If claiming to be an open access journal, is the journal in the Directory of Open Access Journals (DOAJ)? Is the publisher a member of recognized professional organizations that commit to best practices in publishing, such as the Committee on Publication Ethics (COPE); the International Association of Scientific, Technical, & Medical Publishers (STM); or the Open Access Scholarly Publishers Association (OASPA)? Is the journal indexed? Do not accept the journal’s claims about being indexed. Verify these claims by searching for the journal in databases such as PubMedCentral or the Web of Science.

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Is the journal transparent and following best practices when it comes to editorial and peer review processes, governance, and ownership? Are there contact details for the journal and its staff (email, postal address, working telephone number)? Are the costs associated with publishing clear? Modified from Jocalyn Clarke’s, How to avoid predatory journals: a five-point plan [26]

Other Issues in Publication Ethics Salami Slicing Salami slicing is the practice of dividing data and observations accrued from one study into multiple manuscripts, as if the information had been gathered through numerous investigations. This practice may also involve the addition of new data to an original sample, which is then re-analyzed and presented as a novel study. The desire to amass multiple publications is not the ethical dilemma associated with salami slicing; rather the issue lies in withholding pertinent information, such as unintentional findings, when presenting results to the public. Readers should have the opportunity to understand the entire scope of a project when evaluating scientific research [27, 28]. Good Publication Practice 2 (GPP2) offers guidelines for the identification of salami slicing in industry-sponsored medical research. These guidelines state that results should not be published in more than one peer reviewed article unless substantial re-­analysis, re-interpretation, or translation into a different language has taken place. Should results be presented again without meeting these criteria, it must be overtly acknowledged in the text of the manuscript [27].

Plagiarism Text recycling, a practice often raising suspicion for self-plagiarism, is an issue that frequently accompanies salami slicing. As authors divide results from one study for submission as multiple manuscripts, it is common practice to recycle various portions of the text such as the methods or background sections. Some have argued that up to 30% of a manuscript can be reused without committing self-­plagiarism; however, this practice still poses a problem from a copyright perspective [29]. When authors submit a manuscript for publication in medical journals, they must verify that the paper is original and not being considered for publication elsewhere. If a large portion of the paper has

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been recycled and/or salami sliced, then the authors open themselves up to copyright violations, especially if they fail to disclose the related manuscripts [30].

Ghost Writing With eager academicians seeking to bolster their resumes with numerous publications and ever enlarging collaborations, many journals have strict standards defining authorship. These guidelines are typically based on the International Committee of Medical Journal Editors criteria (ICMJE). One of the three criteria comprising the ICMJE guidelines refers to authorship as drafting the article or revising it critically for important intellectual content [31]. When a contributor to a manuscript meets the aforementioned criteria but is not listed on the byline, this constitutes ghost authorship [32]. Ghost writing is a practice frequently utilized by pharmaceutical companies to promote specific medications within prominent medical journals. It is a common practice for pharmaceutical companies to be directly involved in the preparation of manuscripts detailing the efficacy of a new product, with credit for the publication being attributed to a hired guest author. The influence of the sponsoring company is often not acknowledged [33]. This practice is discon-

certing because physicians rely heavily on data presented in ghost written articles when determining whether or not to utilize new therapies. As a result, clinicians may base treatment decisions on information that could have been unduly influenced by pharmaceutical companies producing the treatment.

Conclusion Predatory open access journals, bias within the peer review process, salami slicing, plagiarism, and ghost writing are longstanding ethical issues, which threaten the integrity of scientific publications. It is essential for clinicians to be aware of these issues, so they can be diligent in their evaluation of medical publications. >>Points of Emphasis 55 Predatory open access journals are an emerging threat to scientific literature; information within these publications must be approached with caution. 55 Bias within the current peer review process for medical journals may be due to the lack of double-blinding of reviewer and author. 55 Salami slicing, plagiarism, and ghost writing are all ethical issues affecting academic publications.

Case Scenarios

Case 1 Dr. Winter is a junior faculty dermatologist at an academic center who recently presented a research project at a national meeting. As a result, she was asked to review a manuscript for a prominent journal within her specialty. Before starting her review, Dr. Winter notices that the first author is another dermatologist who has similar research interests, frequently publishing studies that often have opposing hypotheses and conclusions compared to her own. Dr. Winter is aware of her frequent disagreement with the author, but opts to

review the article anyway. Ultimately, she decides that the manuscript be rejected. Case 2 Dr. Summer is a PGY-4 dermatology resident interested in applying for a Mohs micrographic surgery fellowship. Dr. Summer recently completed the manuscript for a retrospective review on wound infections in the context of lower extremity second intention healing after skin cancer surgery. Dr. Summer is worried about getting his manuscript published in time

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for his fellowship application. Throughout his residency, he has received invitations from open access journals. The solicitations offer him the opportunity to submit a manuscript

of the author’s choosing and guarantee fast turnaround time to publication. Dr. Summer accepts an invitation and submits his manuscript to an open access journal.

Analysis of Cases

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The cases at the start of the chapter serve to illustrate potential threats to scholarly literature. Further analysis of the ethical issues depicted in the cases follows here. In Case 1, Dr. Winter displays an ethical shortcoming when she allows the identity of the author to color her review of a manuscript. As a reviewer, Dr. Winter was not blinded to the identity of the author of the manuscript, which allowed for a negative bias to be introduced into her assessment of the work. In the end, potentially valuable information that may improve physician practices and patient outcomes may be withheld from publication due to reviewer bias. While it is not always easy to identify biases, it is imperative for reviewers to minimize partiality in their appraisals in order to preserve the integrity of the peer review process. If Dr. Winter had been able to recognize her emotions toward the author, she could have provided a more impartial review or simply recused herself from the review process all together. Identification of personal bias may not be as easy when it comes to positive feelings about an author on the part of the reviewer. If Dr. Winter had been a friend of the person who authored the manuscript, she may have been more lenient with its shortcomings and recommended the publication of an undeserving study. Regardless of the type of bias, the responsibilities of the reviewer remain the same. Ultimately, the best way to remove bias and ensure an objective evaluation is via a double-blinded peer review. Case 2 depicts Dr. Summer falling to prey to predatory open access journals, which have become an escalating problem within academia over the past 15 years [17]. Dr. Summer seeks to have his manuscript published quickly to strengthen his fellowship application. Traditional journals take months to publish

manuscripts, as the editorial, peer review and publication processes take significant time. Rather than waiting several months to see his manuscript published in a traditional peer review journal, Dr. Summer knowingly submits his paper to a questionable open access journal. Based on the unsolicited email with a promise of fast turnaround, the resident was likely able to deduce that the open access journal did not have an appropriate peer review process in place. This ethically questionable decision increases the likelihood that potential misinformation may be added to the medical literature, as his work may not undergo genuine peer review. While he is likely confident that his study design and manuscript are sound, readers would be unaware that the paper was not properly vetted. Readers assume that manuscripts have undergone peer review; therefore, if there is an egregious error in the research, unsuspecting clinicians may put patients at risk by adopting the findings into their practices. Review and publication times differ between various journals. Dr. Summer should have asked colleagues for recommendations and selected a legitimate journal with a known efficient review process in order to optimize his time to publication while ensuring adequate peer assessment. Though this may not be as well suited for his timeline, Dr. Summer would have helped contribute to the integrity of medical literature. In conclusion, single-blinded peer review and predatory open access journals are potential dangers to medical research. Lack of doubleblinding within peer review introduces bias, the possibility for unworthy work to be accepted, and exceptional work to be rejected. Predatory open access journals threaten to flood academic medicine with literature that has not been thor-

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oughly vetted, potentially putting clinicians and patients at risk. Major publications must continue to refine the peer review process. The Federal Trade Commission has intervened against predatory open access journals, with cer-

Disclosure  We have no financial conflicts of

interest to disclose

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tain offenders being forced to pay judgments as high as $50 million [25]. Medical students, scientists and physicians must be vigilant to protect themselves and the public from the untoward effects of predatory open access journals.

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28. Kassirer JP, Angell M.  Redundant publication: a reminder. N Engl J Med. 1995;333(7):449–50. 29. Roig M.  Re-using text from one’s own previously published papers: an exploratory study of potential self-plagiarism. Psychol Rep. 2005;97(1):43–9. 30. Szklo M, Wilcox A. On the failure to disclose sibling manuscripts. Am J Epidemiol. 2003;157(4):281. 31. Uniform requirements for manuscripts submitted to biomedical journals: writing and editing for bio-

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medical publication. www.icmje.org. Accessed 14 Dec 2009. 32. Rennie D, Flanagin A.  Authorship! Authorship! Guests, ghosts, grafters, and the two-­ sided coin. JAMA. 1994;271:469–71. 33. Relman AS. Separating continuing medical education from pharmaceutical marketing. JAMA. 2001;285: 2009–12.

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Respect for Human Subjects: Ethics in Research Design Cory Kosche, Robin Rolader, and Howa Yeung Contents

 ignificant Ethical Guidance Documents for Clinical S Research – 434  uremberg Code – 434 N Declaration of Helsinki – 434 Belmont Report – 435 International Ethical Guidelines – 435 Good Clinical Practice – 435 The Common Rule – 435

Conclusion – 441 References – 442

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nnLearning Objectives 1. Review the historical context for the development of ethical principles in human subject research. 2. Summarize the major documents that provide guidance on respect for human subjects. 3. Examine examples of ethical dilemmas in human subject research in dermatology.

 ignificant Ethical Guidance S Documents for Clinical Research Throughout history, numerous ethical guidelines have resulted from panels, trials, and expert opinions to provide a framework for clinical research. Many of these documents have established rules and codes that serve as the basis for the regulations adopted by modern institutional review boards, clinical research laws, and guiding principles for the development of clinical trials.

Nuremberg Code The Nuremberg trials were a series of trials against the Nazi party, one of which included holding Nazi physicians accountable for the crimes committed under the guise of medical research [2]. From these trials, the prosecution developed a set of regulations to govern future medical research. These ten principles became known as the “Nuremberg Code.” 1. The voluntary consent of the human subject is absolutely essential. 2. The experiment should be such as to yield fruitful results for the good of society, unprocurable by other methods or means of study, and not random and unnecessary in nature. 3. The experiment should be so designed and based on the results of animal experimentation and a knowledge of the natural history of the disease or other problem under study that the anticipated results will justify the performance of the experiment. 4. The experiment should be conducted so as to avoid all unnecessary physical and mental suffering and injury.

5. No experiment should be conducted where there is an a priori reason to believe that death or disabling injury will occur; except, perhaps, in those experiments where the experimental physicians also serve as subjects. 6. The degree of risk to be taken should never exceed that determined by the humanitarian importance of the problem to be solved by the experiment. 7. Proper preparations should be made and adequate facilities provided to protect the experimental subject against even remote possibilities of injury, disability, or death. 8. The experiment should be conducted only by scientifically qualified persons. The highest degree of skill and care should be required through all stages of the experiment of those who conduct or engage in the experiment. 9. During the course of the experiment the human subject should be at liberty to bring the experiment to an end if he has reached the physical or mental state where continuation of the experiment seems to him to be impossible. 10. During the course of the experiment, the scientist in charge must be prepared to terminate the experiment at any stage, if he has probable cause to believe, in the exercise of the good faith, superior skill and careful judgment required of him that a continuation of the experiment is likely to result in injury, disability, or death to the experimental subject.”

Declaration of Helsinki Originally developed in 1964 and since revised, the Declaration of Helsinki is a set of articles that guide physicians in the ethics of conducting clinical research [3]. Essentially an adaption of the Nuremberg code, the Declaration of Helsinki requires that physicians respect the subject’s right to self-determination and informed consent, recognizing that a subject’s autonomy takes priority. In addition, the Declaration brought forth considerations for protecting vulnerable subjects and highlighted the importance of informed decision making by

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research participants. Notably, the Declaration of Helsinki specifically addresses the importance of randomized, placebo-­controlled trials – supporting their use in clinical research. Revisions to the document continue to note the importance of placebo-­control, but caution that it should be used prudently and not when a proven therapy exists.

Belmont Report In 1976, the National Commission for the Protection of Human Subjects published the Belmont Report to set forth basic principles that guide clinical research: respect for persons, beneficence, and justice [4]. 1. Respect for persons: Mandates that humans are entitled to autonomy and that individuals who lack autonomy or otherwise have diminished decision making capacity deserve extra protection in the context of research. Respecting autonomy requires that participation in research is voluntary and based on a well-informed decision by a participant. 2. Beneficence: Requires that the well-being of participants is ensured under the doctrines of “do not harm” and “maximize benefits and minimize risks.” This principle also defines the ideal that research exists to both benefit the patient and society at large. 3. Justice: Insists that people should be treated equally and fairly. Under this principle, no group of people should be unduly exposed to risk from participation in research, nor should the benefits of research supported by public funds only be accessible to those who can afford them.

ful research with respect for subjects’ rights. Chiefly, it emphasizes reducing unnecessary research, especially in low-resource settings. The general consideration is that research must have “social value,” defined as producing quality information that is relevant to significant health problems and contributes to the creation or evaluation of interventions, policies, or practices that promote individual or public health. Low-resource settings and vulnerable populations are emphasized in the guidelines, mandating that caution be taken to protect these groups from unnecessary burdens associated with research participation (such as unforeseen side effects of a medication). Furthermore, the Guidelines stress that effective interventions be made available to participants for continued use after completion of the trial.

Good Clinical Practice Good Clinical Practice (GCP) guidelines, developed by the International Council for Harmonisation of Technical Requirements for Pharma­ceuticals for Human Use, cover the protection of human subjects and associated data, as well as quality assurance for safety and trial design [6]. Developed in response to scandals involving major adverse events in the pharmaceutical industry, the GCP guidelines cover Institutional Review Boards, investigator and sponsor roles, as well as essential documents and study protocols. Essentially, the GCP guidelines are more technically and procedurally oriented than other ethical guidelines, which serve to emphasize general moral and ethical principles in human subject research.

International Ethical Guidelines

The Common Rule

The Council for International Organizations of Medical Sciences, in collaboration with the World Health Organization, published the International Ethical Guidelines for Biomedical Research Involving Human Subjects in 1982, with numerous revisions since [5]. It is a comprehensive guidance document that promotes the importance of conducting meaning-

The Common Rule encapsulates the modern regulatory standards set to guide Institutional Review Boards in the United States of America in matters concerning human subjects research. Originally published in 1991 and most recently revised in 2018, the Common Rule mandates the function of the IRB, the requirements for informed consent, and requires participation

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from all research institutions [7]. Its subparts B, C, and D describe additional protections and considerations for research involving pregnant women/fetuses/neonates, prisoners, and children, respectively. Notable revisions in 2018 include a mandate that consent forms are worded in a manner that is easier for participants to understand, reduction in routine IRB monitoring for minimal-­ risk studies, and a change in requirements for multi-site studies so that one IRB will be responsible for overseeing the entirety of the study with coordination from the other sites. Additionally, due to the ever-changing technological advances in research, the 2018 revisions mandated that consent forms be more transparent about the potential future use of procured biospecimens. Prospective subjects must provide informed consent about future use of de-identified specimens and must state whether or not they can

expect to share in any commercial profit made from the biospecimens. >>Points of Emphasis 55 Key historical documents, such as Belmont Report and Declaration of Helsinki, provide guidance on ethical conduct in human subject research by mandating respect for participants. 55 Placebo-controls are addressed in some guidance documents, but their role in clinical trials is disputed when used for diseases with known, effective treatments. 55 Using off-label therapies in clinical practice can blur the line between clinical practice and formal human subject research. 55 Front-door consents allow for the broad collection of data but may violate a human subject’s right to comprehensive, transparent informed consent.

Case Examples

 ase 1 - Placebo-Controlled Trial for Diseases C with Well-Accepted Treatments A dermatologist designs a clinical trial to test a novel treatment for a debilitating skin disease. This particular disease is standardly treated with numerous first-line agents, although none have been tested in a randomized, doubleblind, placebo-­controlled clinical trial. To test the efficacy of the novel treatment, he designs a randomized, double-blind, placebo-controlled trial. He plans to enroll 200 patients in the trial with half randomly assigned to receive placebo. A patient enrolls in the trial and has to undergo a 2-week washout period from her active treatment plan in order to participate. There is a 50% chance that she will receive placebo. Discussion The role of placebo in clinical research continues to be controversial and presents an ethical dilemma [8]. While many have argued that a placebo control group is a necessary methodological component of scientific research, others argue that “active-control,” the utilization of a known, effective therapy as a control, is

ethically superior. An ethical dilemma exists in the debate over placebo-control as a gold standard for a disease which has known, efficacious treatments. For example, in psoriasis, should all future trials be placebo-­controlled or controlled against a known standard of care therapy such as methotrexate [9]? Placebo controls allow for the determination of treatment efficacy in a certain population and answers the question, “does it work?” Whereas a study with an active control answers the question, “does it work better?” (or “does it work similarly well?” in a non-inferiority trial with an active comparator group). Placebo-controlled trials are the standard for clinical trials, meta-­ analysis of data, and determination of efficacy for the purpose of regulatory approval, such as by the U.S.  Food and Drug Administration (FDA) [8]. Comparing treatments to a known efficacious treatment may require more complicated non-­inferiority trials and do not necessarily reveal the inherent effectiveness of a given treatment. On one hand, the use of active controls may prevent unnecessary harm to patients who would otherwise receive placebo in the trials. On the other hand, placebo-­controlled trials

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may prevent harm to the general population by ensuring all experimental treatments show superiority against placebo. For example, a drug’s efficacy may be statistically non-inferior to a well-accepted therapy. But if the well-­accepted therapy were historically adopted as standard care and not tested against placebo, then multiple treatments, of which none have been proven to be superior to placebo, may be used on a population. Proponents of active-control argue that patients should not be made to suffer from a disease that has known efficacious treatments [8]. In dermatology, for example, recent trials of adalimumab in patients with moderate to severe hidradenitis suppurativa used placebo controls [10]. Patients with potentially debilitating disease had to undergo a washout period without other potentially efficacious treatments and then were placed on placebo, which may lead to flaring of disease [10]. However, opposition to placebo control in favor of active control is not entirely straightforward. Many equivalence trials (utilizing an active-control) require large sample sizes in order to be appropriately powered, exposing more patients to potential risk from trial participation [8]. Furthermore, proving that any given treatment is superior to placebo is the gold-­standard for determining efficacy. Important questions that arise in designing placebo or active-controlled trials include: 1. What is the optimal duration for keeping a patient on a trial that may cause him or her harm by receiving a placebo or a suboptimal drug? 2. Should active-control drugs be modified to include more modern, efficacious therapies? For example, should new targeted agents for psoriasis therapy be compared to methotrexate or to older biologics? 3. Will changing the control group prevent comparison between trials?

guidance documents are vague on the appropriate role of placebo. The World Medical Association attempted to clarify a point made in the Declaration of Helsinki by suggesting that placebo is justified “where for compelling and scientifically sound methodological reasons its use was necessary to determine the efficacy or safety of a prophylactic, diagnostic or therapeutic method; or where a prophylactic, diagnostic or therapeutic method was being investigated for a minor condition and the patients who received placebo would not be subject to any additional risk of serious or irreversible harm.” However, what defines “compelling and scientifically sound methodological reasons,” “minor condition,” or “serious or irreversible harm” remains elusive [3]. The ethical debate over placebo-controlled trials harkens back to a fundamental dilemma in research ethics: beneficence for the individual human subject vs beneficence for the population. Investigators and regulators must balance the benefit of having a placebo-controlled trial, that rigorously determines if a given therapy is superior to placebo and therefore beneficial for a target population, against the potential harm to individual human research subjects who may be prevented from receiving well-­ established, potentially efficacious therapy while participating in the trial. Informed consent becomes relevant in this topic. Patients must be informed not only of the possibility that they may receive a placebo, but also that they may be able to receive effective treatments without participating in the trial. Receiving a placebo, especially after tapering off an active treatment plan, can present a significant risk to a patient, and this warrants a clear, thorough discussion.  ase 2 – Treating with Novel Off-label C Therapies vs Conducting Clinical Research

A dermatologist has numerous patients with prurigo nodularis refractory to multiple standard of care treatments. He hypothesizes that a If placebo control is considered the gold-­ compounded topical formulation of an existing standard in regulatory approval for new treat- oral immunosuppressive medication may be ments, patients in clinical trials may not be effective. He decides to treat five patients with treated with known, effective therapies. Ethical this novel formulation off-label with the intent

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to publish the cases as a case series. To better document the effect of the therapy, he collects information regarding disease severity, treatment effect, and quality of life with validated instruments. He records this information in the electronic medical record. After the five patients have completed treatment with the new therapy, he plans to author a case series on the outcome of this novel treatment approach and its impact on quality of life. Discussion Case two represents a phenomenon in which physician-researchers treat patients with a novel treatment method off-label to test its efficacy. Administering validated and standardized scales, questionnaires, and other measures enables systematic evaluation of the treatment, which qualifies this study as human subjects research. Ethical standards for research, following publication of guidelines such as the Nuremberg Code and Belmont Report, have created a culture with strict requirements for informed consent grounded in respect for human subjects. In the process of informed consent, research subjects are entitled to a comprehensive discussion of the risks and benefits of participation. In the absence of such a process, administering unapproved treatments or novel therapeutic strategies in the clinical setting may result in the patient experiencing undisclosed harm and be grounds for malpractice claims of negligence. Furthermore, physicians may be incentivized to produce publishable results at the expense of quality patient care by administering potentially ineffective or harmful therapy. Case series are often the basis for the development of larger, randomized controlled trials. They may provide the basic insights into treatment parameters that justify the larger trials. Furthermore, trying a novel therapeutic strategy for a patient who has failed multiple treatments or for a patient with a rare disease is well within a physician’s scope of practice. Per the FDA, “Use of a marketed product in this manner when the intent is the “practice of medicine” does not require the submission of an

Investigational New Drug Application (IND), Investigational Device Exemption (IDE) or review by an Institutional Review Board (IRB)” [11]. However, pursuing a novel therapy with the intent to collect information specifically for research purposes and publication and circumvent the oversight process should not be considered generalizable knowledge or a credible contribution to any standard of safety or efficacy for a given therapy. This scenario brings forward the difference, or potentially lack thereof, between research and clinical practice. The Belmont Report distinguishes research as producing generalizable knowledge and clinical practice as enhancing the well-being of an individual [4]. Randomizing patients to treatment arms, including placebo, collecting information on safety, pharmacokinetics, and other data, are all a part of the research process that enhance generalizable knowledge and potentially subject a patient to additional risk. In clinical practice, the risk of trying a novel therapy is still discussed, but without the oversight of an IRB. Providers are allowed to suggest off-­label treatments provided they have discussed material risks, benefits and alternative with patients. Generally, publishing information about novel therapies administered to a few patients is allowed and does not require IRB oversight. Many IRBs maintain an arbitrary limit of five patients treated with off-label therapy, above which research oversight is required. Allowing the patient the choice to participate in research upholds respect for her autonomy. In research, the role of individual risk and benefit as well as of personal benefit versus population benefit must be thoroughly discussed during the informed consent process. Standardized, written informed consent is often not required in the context of off-label use of approved treatments as long as the patient and the clinician jointly elect to pursue this treatment through informal informed consent for treatment [12]. Caution must be taken in this clinical setting, however. Suggesting offlabel therapies as treatment options that can be scientifically justified and given safely may be beneficial to patients and good clinical practice. However, the potential for subjecting patients

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to potentially unforeseen harm in order to collect data must be considered, particularly if the intent is to create generalizable knowledge. Potential conflicts of interest between a clinician’s duty to advocate for the patient’s best interest and a researcher’s incentive to enroll a patient and create generalizable knowledge must be explicitly disclosed to patients. As the provider in this case intends to publish his findings, patient consent must include this intent. Academic journals increasingly require written patient consent for publication of photos and other potentially identifying information in order to support respect for patients’ autonomy when publishing cases. Patients should not only have control over what potentially identifying information is being published but also be made aware of the potential teaching application of the case. Informing a patient that her case is intended for publication in an academic journal also reveals to them potential motivations for collecting data, both patient-focused and ­research-­focused. Case 3 – Front-door Consents A dermatologist has grown a relatively large practice of patients with autoimmune blistering diseases as she is the only expert in her region. She believes that she has a unique opportunity to further the knowledge about this condition through research. She envisions a scenario in which she is able to collect many variables to further elucidate etiology and pathophysiology, while also hopefully developing methods to track treatment response and quality of life impact. She hopes to collect many potentially relevant data, such as risk factors, disease characteristics, biomarkers, clinical endpoints, and quality of life impact, but, as yet, no specific research questions have been developed. She designs a broad consent for research that includes the ability to capture demographic data, disease specific questionnaires, quality of life surveys, and tissue sampling for analysis or biobanking. She anticipates that she will be able to analyze any and all of these variables, including genetic data, for

future publication and grant writing. Patients may not know, at the time of consent, what research question will be addressed and what may result from their research participation. Discussion This case presentation represents a research approach known by the colloquial term, “frontdoor consent.” The idea is to set up a broad, wide-reaching study design so that almost all conceivable data and tissue can be collected for as yet undetermined future use. While this broad approach can allow for future research that would benefit a needed area of medicine, unintentional consequences may have ethical implications. Before delving into the various components of a “front-door consent,” the term requires a working definition. For the purposes of this analysis, “front-door consent” means that a patient is being asked to consent to a very broad research study that intends to collect many variables for undetermined future use. Some call this design a “broad consent.” A similar term, “front-door authorization,” refers to paperwork given to patients in the waiting area that requests permission for investigators to contact a patient about research [13]. A patient with a specific condition can then be contacted if she appears eligible for a study through screening of the electronic medical record. According to some institutional protocols, physicians may still discuss their own past or present studies with the patient even if the patient did not sign the frontdoor authorization. Additionally, a “modified front-door consent” has been used by some institutions, in which patients either opt-in or opt-out of research [14]. While patients may or may not have a good understanding of the basics of the research study during the consent process, this concept of a “front-door consent” or “broad consent” may have some unanticipated consequences for both patient and researcher alike [15–17]. Broader, wide-reaching research studies are arguably less understood by patients than research projects with a specific aim, and these

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former study types are at risk of falling short of ethical standards for the conduct of research. Broad consents are preferable to the researcher when there is a desire to use collected data to address future, as yet unknown research questions. Specific consents, while more directly addressing the intended use of the data collected, are more limiting to the future usability of the data for other purposes. As such, specific consents may tip the scale more towards beneficence of the subject, whereas broad consents have the potential to provide greater societal benefit. In creating a research project and its accompanying consent form, the researcher needs to not only spell out the project protocol, but also address the relevant ethical concepts of beneficence, autonomy, justice, and nonmaleficence [18]. Respect for autonomy is largely addressed in the consenting process itself, for patients have the choice to participate in the research regardless of the type of project, broad or specific. For broad consents, it may be argued that the burden of risk is borne by the subjects to a greater degree than with specific consents as they are agreeing to undetermined future research which may pose risk. Biospecimens may be subjected to future scientific techniques not yet developed. What implications might these results have for subjects? Perhaps newly discovered gene mutations connected to lethal conditions are detected in future genetic analysis of the biospecimens collected under this approach. The reporting of said findings back to patients could not only affect their insurance status, but also their emotional health. Does this approach harbor more maleficence, perhaps unintentionally, than specific consents? To more appropriately consider these tenants of ethical research, a solution might be to start with a broad consent that would allow for the collection of a vast amount of data. This could then be followed by a specific consent once the future tests and analyses are determined to address a particular research question. This would allow for continued respect for

patient autonomy while also minimizing maleficence and maximizing beneficence. Although follow-­up specific consents are not yet universally required after broad consents, we argue that perhaps they should be. Front door consents have several ethical pitfalls. Incidental findings with existing specimens may arise that have positive or negative clinical implications for the research subjects. For example, if a researcher drew blood from patients under a broad consent and later tested all of the samples with an autoimmune panel, what should the researcher do if she finds a high titer ANA? Is she obligated to report this back to the patient? Incidental findings are common [19], and careful consideration regarding the reporting of these findings must be part of the consent form. Discovering abnormalities or genetic predispositions may have clinical, emotional, or financial implications for patients, such as future insurance eligibility and cost, follow up studies or visits that are costly and potentially unnecessary, as well as emotional impact from a new diagnoses. Though these consequences may seem harmful, some surveys have found that patients prefer to know these incidental findings discovered during research [19]. Though some organizations have proposed specific methods for reporting these findings [19–21], most seem to fall back on the vague directive of finding whatever method is best for your institution that balances the beneficence and maleficence of the subject. In research, the discovery of certain abnormal findings such as a positive ANA or positive HIV test comes with its own set of ethical dilemmas. Certainly, some states require that positive results of communicable diseases be reported to research subjects, and institutions may have their own regulations in reporting these findings. However, genetic tests carried out during research warrant special attention in terms of the obligation to report back to the patient as well as language surrounding the storage of genetic information. For example,

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there is institution-specific language that must be in place in the consent form when genetics are part of a research study. This language includes phrases like “It is important to know that our understanding of genetics is changing quickly, and in many cases, we will not know for sure what the results mean for your future health.” Patients can also express specific preferences as to whether or not they want genetic results relayed back to them [13]. When the research question is specific, and the patient has chosen whether or not she wants genetic results, there is no real ethical dilemma. However, when the genetic data are being stored for future, as yet unknown testing, problems may arise. Here is an example of consent form language that addresses the storage of de-identified genetic information: “[This] will ensure that, by current scientific standards and known methods, it is extremely unlikely that anyone would be able to identify you from the information we share” [13]. Inherent to that statement is that future scientific methods may be developed that could link that genetic information back to a specific patient, and a patient’s consent to broad, future use of this tissue sample may expose her to this unintended breach of confidentiality. For a broad consent, it is logistically difficult to spell out all possible results and the options for reporting these results. Even if all options are addressed in the consent form, how feasible would it be to even honor the choice made by the subject in the context of a future specific use of her data? The tracking of each subject’s choice alone would require extra staff and time. There are many groups that have made recommendations for the reporting of genetic research out-

Conclusion Respect for human subjects is essential to the ethical conduct of clinical research. While the pursuit of generalizable knowledge for the benefit of a population may come at the expense of individual benefit, every measure must be taken

comes back to patients [22–25], but there does not seem to be a clear consensus, nor are there universal regulations. If research findings are going to be reported to the subject, whose responsibility is it to relay this information? For genetic findings, a genetics counselor might be the most qualified person to explain the implications of the abnormal test result, but this may not be feasible for all research institutions. Is the researcher required to follow up with the subject after the abnormal result has been relayed? In consenting patients for inherently broad research projects, the researcher should consider the various outcomes of the large data collection and be prepared to handle these outcomes in a way that respects patient autonomy and maximizes beneficence. When the potential outcomes of future research are unknown, the researcher is at risk of “jumping to conclusions” because the original inquiry was not hypothesis driven. When large amounts of data are collected and analyzed without a priori hypotheses, spurious associations may arise and lead to noncausal and potentially erroneous conclusions. There are fewer opportunities to mistake a correlation in the dataset when the data set is considerably smaller and hypothesized, as is the case for specific research projects. In regard to broad “front door consents,” or any research consent, there is a constant struggle between doing what is best for the subject and what is best for the research and, inherently, the greater good of society. Ultimately, the informed consent process, for either broad or specific studies, should be an individualized discussion that balances patient beneficence and autonomy.

to prevent harm to participants. The consequences of participation in research must be carefully considered in research design, including the potential risks of a placebo-­arm or the unforeseen consequences of a front-door consent. Furthermore, research should be subject to the oversight of institutional review boards and

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care must be taken to ensure human subjects research does not take place under the guise of clinical practice. Dermatology researchers must prioritize respect for human subjects when asking research questions and designing studies. Whenever possible, appropriate ethical committees should be consulted to prevent unintended consequences. In doing so, researchers can advance the field in a safe and ethical manner.

medical devices: guidance for institutional review boards and clinical investigators. [Access 2019 May 28]. Available https://www.fda.gov/regulatory-information/search-fda-guidance-documents/label-andinvestigational-use-marketed-drugs-biologics-andmedical-devices. 12. Piasecki J, Dranseika V.  Research versus practice: the dilemmas of research ethics in the era of learning health-care systems. Bioethics. 2019;00:1–8. 13. Emory Institutional Review Board: Frequently Asked Questions [Internet]. [cited 2019 May 23]. Available from: http://www.irb.emory.edu/forms/faqs.html. 14. Ost JA, Newton PW, Neilson DR, Cioffi JA, Wackym PA, Perkins RS. Progressive consent and speciReferences men accrual models to address sustainability: a decade’s experience at an Oregon biorepository. Biopreserv Biobank. 2017;15(1):3–8. 1. Twenty years after: the legacy of the Tuskegee syph15. Strech D, Bein S, Brumhard M, Eisenmenger W, ilis study. Hastings Cent Rep. 1992;22(6):29–40. Glinicke C, Herbst T, et al. A template for broad con 2. The Nuremberg Code. The BMJ, British Medical sent in biobank research. Results and explanation of Journal Publishing Group. 1947. an evidence and consensus-based development pro 3. World Medical Association. World Medical Associcess. Eur J Med Genet. 2016;59(6–7):295–309. ation Declaration of Helsinki. Ethical principles for medical research involving human subjects. Bull 16. Richter G, Krawczak M, Lieb W, Wolff L, Schreiber S, Buyx A. Broad consent for health care-­embedded World Health Org. 2001;79(4):373. biobanking: understanding and reasons to donate in 4. National Commission for the Protection of Human a large patient sample. Genet Med. 2018;20(1):76–82. Subjects of Biomedical and Behavioral Research. The Belmont report: ethical principles and guide- 17. De Vries RG, Tomlinson T, Kim HM, Krenz C, Haggerty D, Ryan KA, et al. Understanding the public’s lines for the protection of human subjects of reservations about broad consent and study-by-study research. Bethesda: The Commission; 1978. consent for donations to a biobank: results of a 5. Council for International Organizations of Medical national survey. PLoS One. 2016;11(7):e0159113. Sciences (CIOMS). International ethical guidelines for health-related research involving humans. 4th 18. Cocanour CS. Informed consent-It’s more than a signature on a piece of paper. Am J Surg. 2017;214(6): ed. Geneva: CIOMS; 2016. 993–7. 6. International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human 19. Wan MT, Torigian DA, Alavi A, Alvarez J, Chiesa Fuxench ZC, Noe MH, et  al. Prevalence of cliniUse. [Accessed on 2019 May 15]. Available from: cally significant incidental findings by whole-­body https://www.ich.org/fileadmin/Public_Web_Site/ fludeoxyglucose F 18 positron emission tomograICH_Products/Guidelines/Efficacy/E6/E6_R1_ phy/computed tomography scanning in moderateGuideline.pdf. to-severe psoriasis patients participating in clinical 7. Office for Human Research Protections. Revised trials. J Am Acad Dermatol. 2019;80(6):1630–9. Common Rule Regulatory Text. Available from: https://www.hhs.gov/ohrp/regulations-and-policy/ 20. Ells C, Thombs BD. The ethics of how to manage incidental findings. CMAJ. 2014;186(9):655–6. regulations/revised-common-rule-regulatory-text/ 21. Wolf SM, Lawrenz FP, Nelson CA, Kahn JP, Cho index.html. MK, Clayton EW, et al. Managing incidental findings 8. Emanuel EJ, Miller FG.  The ethics of placebo-­ in human subjects research: analysis and recommencontrolled trials—a middle ground. NEJM. 2001; dations. J Law Med Ethics. 2008;36(2):219–48, 211 345(12):915–9. 22. Weiner C.  Anticipate and communicate: ethical 9. Kavanaugh A.  Ethical and practical issues in con- management of incidental and secondary findings ducting clinical trials in psoriasis and psoriatic in the clinical, research, and direct-to-consumer arthritis. Ann Rheum Dis. 2005;64:46–8. contexts (December 2013 report of the Presidential 10. Jemec G, Gottlieb A, Forman S, Giamarellos-­ Commission for the Study of Bioethical Issues). Am Bourboulis E, et  al. Efficacy and safety of adalimJ Epidemiol. 2014;180(6):562–4. umab in patients with moderate to severe hidradenitis suppurativa: results from PIONEER II, a phase 3, 23. National Heart, Lung, and Blood Institute working group, Fabsitz RR, McGuire A, Sharp RR, Puggal randomized, placebo-controlled trial. J Am Acad M, Beskow LM, et al. Ethical and practical guideDermatol. 2015;72(5):AB45. lines for reporting genetic research results to study 11. US Food and Drug Administration. “Off-­label” and participants: updated guidelines from a National investigational use of marketed drugs, biologics, and

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Heart, Lung, and Blood Institute working group. Circ Cardiovasc Genet. 2010;3(6):574–80. 24. Appelbaum PS, Parens E, Waldman CR, Klitzman R, Fyer A, Martinez J, et al. Models of consent to return of incidental findings in genomic research. Hast Cent Rep. 2014;44(4):22–32.

25. Kalia SS, Adelman K, Bale SJ, Chung WK, Eng C, Evans JP, et al. Recommendations for reporting of secondary findings in clinical exome and genome sequencing, 2016 update (ACMG SF v2.0): a policy statement of the American College of Medical Genetics and Genomics. Genet Med. 2017;19(2):249–55.

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Conflicts of Interest Clifford S. Perlis Contents

Definition of Conflicts of Interest – 446 Potential (and Real) Harms from Conflicts of Interest – 447 Strategies for Managing Conflicts of Interest – 447 Conclusion – 451 References – 451

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1. Define conflicts of interest and present examples in dermatology. 2. Illustrate adverse effects resulting from conflicts of interest. 3. Identify management approaches for limiting harms from conflicts of interest.

>>Points of Emphasis 55 Conflicts of interest develop whenever secondary interests may compromise judgement or actions related to a primary interest. 55 Financial, personal, professional, and other relationships may all create conflicts of interest. 55 Ethical management of conflicts of interest requires avoidance (in some circumstances), disclosure, and careful restriction of relationships that could inappropriately compromise medicine’s primary commitment to patients.

Definition of Conflicts of Interest The Institute of Medicine defines a conflict of interest as “a set of circumstances that creates a risk that professional judgment or actions regarding a primary interest will be unduly influenced by a secondary interest.” [1] Actual wrongdoing or even simple discordance of primary and secondary interests is not needed to create a conflict of interest. The risk of undue influence is alone sufficient to create a conflict of interest. In the case of physicians, the primary interest is easy to identify: optimal patient care. The American Academy of Dermatology recognizes this primacy in its ethic’s pledge. The first line is: I pledge to “Put my patients’ welfare above all other interests.” [2] Financial interests are a commonly recognized secondary interest. For example, a dermatologist may choose to lecture about a new acne medication and is paid for these presentations by the company producing the medication. Prescribing the medication more frequently would lead to more opportunities for paid presentations. In this case, the physician’s interest in prescribing the most appropriate acne therapy for patients

would be primary. The physician’s interest in prescribing more of the newer medication to earn additional speaking opportunities and associated compensation would be a secondary interest. A conflict arises because the secondary interest appears to threaten the primary one. Other financial conflicts of interest are less obvious. In many industry-sponsored clinical trials, the pharmaceutical company will fund a trial through an academic department. That is, the funds will not flow directly to the researcher. However, the department then uses these funds (and others) to support the physician. While the physician’s primary interest is again in caring for the patient, there may be a secondary (and conflicting) financial interest in enrolling additional patients to the study. Having more study subjects leads to more payments to the department by the pharmaceutical company, and more funds available to support clinical trials, the principal investigator, and other departmental endeavors. Not all conflicts of interest are financial in nature. In the above example of clinical trials, consider other pressures that a junior faculty member may feel to enroll subjects. Departmental promotions and professional prestige accrue to those who successfully execute trials. These pressures, however, represent a secondary interest sometimes conflicting with the primary interest to support a patient’s wellbeing. A few points about conflicts of interest become clear. First, the necessary circumstances require primary and secondary interests that appear to be in opposition. While secondary interests may be financial, they may also represent harder to identify benefits. These could include: reputational gain, intellectual consistency, familial harmony, and others. Conflicts of interest are ubiquitous. >>Points of Emphasis 55 The Institute of Medicine defines a conflict of interest as “a set of circumstances that creates a risk that professional judgment or actions regarding a primary interest will be unduly influenced by a secondary interest [1].” 55 In the case of physicians, the primary interest is easy to identify: optimal patient care.

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55 While secondary interests may be financial, they may also represent harder to identify benefits. These could include: reputational gain, intellectual consistency, familial harmony, and others. 55 A conflict of interest arises when secondary and primary interests conflict

 otential (and Real) Harms P from Conflicts of Interest If conflicts of interest are so widespread, what is the problem with them? In fact, conflicts of interest are not inherently harmful. In many cases, conflicts of interest pervade daily life without adversely impacting decision making. However, a major concern is that secondary interests will take precedence over primary ones. In the first example above, the dermatologist presenter may be more inclined to prescribe less appropriate acne medications for particular patients due to interests in earning more presentation opportunities and associated compensation. Or, the junior faculty member may enroll patients into a study when other safe and effective treatments exist in order to enhance the likelihood of academic promotion. The concern is that secondary interests take priority over (or even appear to take priority over) patient welfare. A mature and enlarging literature documents that financial interests, even small ones, influence physician behavior. Several studies show that interactions with pharmaceutical companies increase prescription rates for the promoted medications. One study matched reported industry payments to physicians in the Open Payments Program to Medicare Part D prescriber data. The Open Payments Program is a federal program that publicly reports all “transfers of value” from drug and medical device manufacturers to physicians and teaching hospitals. For dermatologists, there is a significantly increasing likelihood to prescribe branded medications for each successive quintile of industry payments [3]. Another study showed that even small gifts—such as a meal—increased the prescription rates for the brand-name medication that was promoted [4]. At the very least, secondary interests lead physicians to prescribe

branded medications more frequently than generic alternatives. As branded options often cost more than generic ones, small gifts (including meals) likely contribute to rising medication costs. A systematic review of industry sponsorship of research demonstrated similar findings. The review identified 37 studies about study sponsorship and aggregated reported results. The pooled data showed a statistically significant relationship between industry sponsorship and pro-industry conclusions (OR 3.70; 95% CI, 2.63–4.91) [5]. In addition, industry sponsorship was “associated with restrictions on publication and data sharing.” Open presentation of study findings, both positive and negative, prevents wasted study repetition and promotes optimal patient care. Its important to recognize that most of these outcomes likely do not result from conscious decisions to place secondary interests above patient interests. The conflicts of interests are simply circumstances; they are not reflective of individuals themselves. Accordingly, conflicts of interest impact decision making in subtle and often unrecognizable ways. >>Points of Emphasis 55 Several studies show that interaction with pharmaceutical companies increases prescription rates for the promoted medications. 55 At the very least, secondary interests lead physicians to prescribe branded medications more frequently than generic alternatives. 55 Conflicts of interest impact decision making in subtle and often unrecognizable ways

 trategies for Managing Conflicts S of Interest By definition, the primary consideration of medicine—patient welfare—should always take priority over secondary ones. How can ethics manage conflicts of interest to maintain the primacy of patient welfare? At least three ethical approaches can inform this discussion. The first is utilitarianism. This approach

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endorses a management strategy that provides the most good for the most people. Another approach is one that emphasize rights, or a deontological perspective. Derived from Kantian principles, the goal is to create rules that can be universalizable. For example, secondary interests should only be allowed when they will not conflict with primary ones. A final approach derives from virtue ethics. That is, how would a virtuous individual (physician) manage or avoid conflicts of interest? From these three ethical paradigms, several approaches to managing conflicts of interest emerge. These include: 1. Eliminate conflicts of interest 2. Disclose conflicts of interest 3. Limit conflicts of interest

close these to any affected parties so that they may judge bias appropriately. In fact, this approach has been widely adopted. The Patient Protection and Affordable Care Act is a federal law requiring all manufacturers that make products reimbursed by a government-­ run health program to report on all payments and other transfers of value to physicians. These results are publicly available [6]. In addition, almost all scientific publications require authors to identify, disclose, and publish conflicts of interest [7]. Furthermore, the American Academy of Dermatology espouses such a policy for participation in official Academy business and continuing medical education events [8].

1. The first approach, eliminating conflicts of interest appeals to all three ethical schools of thought. If there are no secondary interests, then there is no possibility of a conflict arising with primary ones. This approach is often impossible in the real world, however. Different interests—financial and otherwise—are ubiquitous.

The rationale for disclosure is twofold: 1. Physicians may be more cautious about which relationships they choose to enter, knowing such relationships will be publicly available. That is, if a physician knows that certain conflicts of interest could be widely publicized, the physician may more cautiously choose which relationships to enter. 2. Knowledge about existing secondary interests will allow consumers (patients, doctors reading a journal article, and others) to more accurately and critically evaluate the recommendations by taking into account bias in the conflicted party. Aside from potential privacy concerns of physicians recognized in a rights-based analysis, all three ethical models would seem to support disclosure as necessary management. Disclosure would seem to promote the most good for the most individuals, as supported from a consequentialist analysis. From a deontological perspective, disclosure is required to respect the autonomy of patients. Without full disclosure of physician interests, patients are unable to make informed decisions. And, from a virtue point of view, an ethical physician should gladly share her or his secondary interests. Disclosure alone, however, is insufficient to manage conflicts of interest in many cases. In practice, disclosure itself is frequently inconsistent. A recent study of clinical practice guidelines authors revealed that over half (55%) of 49 authors did not accurately disclose industry relationships based on a comparison to the

It may be possible, though, to eliminate certain kinds of conflicts. For example, strict policies prohibiting direct financial benefit (such as honoraria, lunches, or gifts) for products one prescribes, researches, or educates others about could be implemented. From a utilitarian perspective, the aggregate benefit to patients and protection of the primary i­ nterest would seem valuable. A deontological evaluation is less clear-cut. What is the physician’s right to be compensated for reasonable educational and research contributions, whether industry-supported or not? Does a physician’s commitment to patient wellbeing require the physician to forfeit fair and appropriate compensation for other related activities? Virtue ethics could certainly espouse avoiding conflicts of interest as the practice of an ethical physician. On the other hand, it also seems possible that a virtuous physician could have conflicts of interest. 2. A second strategy for managing conflicts of interest involves disclosure. That is, individuals with secondary interests should dis-

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Open Payments database [9]. Other authors have reported similar findings [10–12]. Even if secondary interests are accurately disclosed, the act of disclosure itself may perversely worsen biases. A series of social science experiments demonstrate that disclosure may exacerbate bias in at least two ways [13]. Through moral licensing, disclosers may feel the act of disclosure absolves them from responsibility to avoid bias. The rationale is “caveat emptor.” Consumers of the information know a secondary interest exists and so they should approach the information with appropriate skepticism. Physicians are free to act on the secondary interests because patients have been forewarned. A related phenomenon, strategic exaggeration, may also exacerbate bias. Recognizing that the audience (patients) will “discount” findings from a presenter (physician) with a secondary interest, the presenter may exaggerate the findings with the hope that the discounted interpretation will represent the intended or true findings. Consider the following example: a physician feels the true risk of an adverse outcome from a clinical trial medication is 10%. The physician has told the patient that the physician has a secondary interest in enrolling the patient to the trial. The physician knows that the patient may therefore “discount” the physician’s recommendation. Therefore, the physician will demonstrate strategic exaggeration by explaining to the patient that the risk of an adverse outcome is 5%. The rationale is that the patient will adjust this recommendation in consideration of the conflict of interest, and likely assign the risk value to closer to the true value of 10%. The physician’s utilization of strategic exaggeration is an attempt to help the patient achieve an accurate assessment. However, this attempt may further muddy the decision making waters and represent dishonesty. Aside from the impact of disclosure on those providing the information (physicians), the impact on those receiving the information (patients) can also be problematic. A study of individuals who should be well-­equipped to evaluate conflicts of interest, physicians themselves, showed that they did not consistently account for conflicts of interest reported in

medical literature. A survey of 515 fellows of the American College of Obstetrics and Gynecology revealed that a majority believed they would “discount” findings where a researcher or presenter had a conflict of interest; the respondents did not, however, actually discount findings based on reading a single abstract or scenario [14]. Even individuals familiar with the concept of conflict of interest and aware of the role of disclosures failed to adequately incorporate this information into their own decision making. Patients may be even less likely to be able to accurately process disclosures and account for associated biases. While utilitarian, deontological, and virtue ethics support disclosure of conflicts of interest, empirical studies reveal that disclosure alone cannot resolve all harms from conflicts of interest. A third approach to managing conflicts of interest involves implementing steps to limit their influence. The steps could involve restricting qualitative and quantitative aspects of secondary interests. For example, the American Academy of Dermatology requires that a majority of participants on Clinical Practice Guidelines committees lack any relevant conflicts of interest [15]. Individuals with secondary interests may participate but cannot represent a majority of participants. Other possibilities could include permitting direct monetary payments for industry consulting, but disallowing payments in the form of equity or options whose value would depend on the performance of the sponsored product. In this way, physicians could be fairly compensated for their contributions. However, the risk of inappropriate influence to support the product (and increase one’s own compensation) would be limited. Similarly, physicians could be limited in what percent of annual income could be derived from direct industry payments. 3. This third approach to managing conflicts of interest through specific restrictions achieves some ethical objectives, although falls short in other respects. From a utilitarian perspective, this compromise position may, in many cases protect patient interests without sacrificing potential, reasonable gains from secondary interests. A rightsbased analysis demonstrates the importance

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of compromise. Protecting physicians’ rights for fair compensation for industry activities requires limiting the exercise of these rights. Such compromise is not, however, unfamiliar or unreasonable. Often, one’s rights to freedom of expression or action are limited to the degree that the exercise of these rights encroaches on the rights of others. Rights are rarely absolute, and compromise is often desirable. A virtuous individual would certainly embrace certain restrictions concerning conflicts of interest. The challenge, however, rests with defining the specific nature of the restrictions.

>>Points of Emphasis There are at least three approaches to managing conflicts of interest: 55 Eliminate conflicts of interest through strict policies that prohibit certain types of behavior, interactions or financial benefits 55 Disclose conflicts of interest. Although required by all journals and most professional organizations, it is not always accurate. Disclosure can have unintended adverse consequences 55 Limit conflicts of interest through specific restrictions, which may be difficult to define

Cases

Case 1 Dr. Peritum is an international expert in caring for patients with severe atopic dermatitis. Biologicon is developing a new agent for the treatment of atopic dermatitis. The company would like to hire Dr. Peritum to help it better understand the needs of atopic dermatitis patients, learn how to measure disease severity, and gain access to the atopic dermatitis patient population. Dr. Peritum would like to contribute to improving care for her patients by collaborating with Biologicon and would also like to be compensated fairly for her time. She’d also like to structure the relationship in an ethical and appropriate manner in accordance with her institution’s conflict of interest policy.

daily lunches sponsored by pharmaceutical representatives. The agents bring in food for the entire office staff and then expect to have 30 minutes to discuss sponsored medications with the physicians. He is uncomfortable with this practice, but unsure why or how to bring up this concern with his colleagues. Case 3 Dr. Vendito and her partners have recently decided to sell products in their office. They are aware that this practice creates conflicts of interest and hope to find a way to incorporate this activity without compromising their commitments to the welfare of their patients.

Case 2 Dr. Esurient has recently joined a new dermatology group. He notices that the new practice has

Analysis

For Case 1, there are several ways Dr. Peritum could structure an arrangement that will not only protect her primary interest in promoting patient welfare from secondary considerations, but even further this primary interest. Her expert knowledge combined with industry support could lead

to better treatments for atopic dermatitis. To ensure that secondary interests, financial or otherwise, from this participation do not compromise patient welfare, Dr. Peritum may consider certain steps. As a start, respecting her patients’ rights requires that she disclose her relationship with

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Biologicon. Additionally, she may agree to monetary compensation that is entirely independent from the possible success (or failure) of any new products she helps develop. For situations where conflicts may arise—such as enrolling subjects in a trial of a Biologicon product—Dr. Peritum may choose to involve other colleagues who do not have financial relationships with Biologicon. These actions would allow Dr. Peritum to secure her primary interest to her patients from conflicting secondary interests. Dr. Esurient, in case 2, faces a challenge in that receiving meals from industry may not immediately appear to represent a conflict of interest. However, his moral compass reflects empirical data. Research confirms that even small gifts—such as a free meal—influence prescribing behavior [4]. By design, these events present promotional information on a particular product rather than a balanced discussion of therapeutic options. Furthermore, money spent on promotional activities (including meals) contributes to the rising costs of medications. Participating in pharmaceutical lunches, no matter how well-intentioned, threatens the primacy of patient interests. The secondary interests, as embodied by the lunches, compromise patient interests by inappropriately influencing prescribing behavior and raising medication costs. Addressing his concerns with his colleagues is uncomfortable, though not necessarily ethically

Conclusion The primacy of patient well-being is the foundation of medical practice. A conflict of interest arises when secondary interests appear to compromise judgement or actions related to a primary interest. For physicians, the primary interest is patient wellbeing. While financial conflicts of interest are the most frequently recognized, other professional and personal commitments also generate compelling secondary interests. Conflicts of interest are ubiquitous and not inherently wrong. Accordingly, consequentialist, deontological, and virtue ethics considerations endorse thoughtful management of conflicts of interest. In some extreme

challenging. Through appropriate and respectful dialogue, Dr. Esurient should convey his ethical observations to his colleagues. Open conversation provides Dr. Esurient the chance to discuss his concerns, and his colleagues to consider them. Even if the other physicians choose to continue welcoming small gifts and meals, Dr. Esurient himself should feel no obligation to participate in industry-sponsored luncheons and promotional activities. Rather, Dr. Esurient should allow his ethical compass to direct his behavior. Ethically incorporating product sales in a dermatology practice requires careful self-­ examination. Dr. Vendito and her colleagues need to candidly examine their motivations for introducing products. If the products are otherwise unavailable or more expensive elsewhere, then in-office dispensing may further patient interests. In other cases, it’s important to ensure that secondary interests for increased profit do not cloud decision making. Compensation for practice and products is not inherently unethical. It is, however, ethically questionable when dermatologists sell products readily available or less expensive elsewhere [16]. At the very least, Dr. Vendito and her colleagues should disclose their own financial incentives as well as alternative products and sources for those products.

circumstances, such conflicts should be avoided. In other circumstances, conflicts may be disclosed and limited.

References 1. Lo B, Field MJ, editors. Conflict of Interest in Medical Research, Education, and Practice. Institute of Medicine (US) Committee on Conflict of Interest in Medical Research, Education and Practice. Washington, D.C.: National Academies Press (US); 2009. p. 46. 2. Stoff BK, Scully K, Housholder AL, Fabbro S, Kantor J. The American Academy of Dermatology (AAD) ethics pledge: i will put my patients’ welfare above all other interests, provide care that adheres to professional standards of practice, provide care

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for those in need, and foster collegiality through interaction with the medical community. J Am Acad Dermatol. 2016;75:445–8. Perlis RH, Perlis CS. Physician payments from industry are associated with greater Medicare part D prescribing costs. PLoS One. 2016;11:e0155474. DeJong C, Aguilar T, Tseng CW, Lin GA, Boscardin WJ, Dudley RA. Pharmaceutical industry-­sponsored meals and physician prescribing patterns for Medicare beneficiaries. JAMA Intern Med. 2016;176:1114–22. Bekelman JE, Li Y, Gross CP. Scope and impact of financial conflicts of interest in biomedical research: a systematic review. JAMA. 2003;289:454–65. Centers for Medicare and Medicaid Services. Open Payments. Available at: https://www.cms.gov/OpenPayments. Accessed 5 June 2020. International Committee of Medical Journal Editors. Disclosure of Financial and Non-Financial Relationships and Activities, and Conflicts of Interest. Available at: http://www.icmje.org/recommend at i o n s / b row s e / ro l e s - a n d - r e s p o n s i b i l i t i e s / author-responsibilities%2D%2Dconflicts-of-interest.html. Accessed 5 June 2020. American Academy of Dermatology. Position statement on contemporary issues: conflict of interest. Available at: https://server.aad.org/Forms/Policies/ Uploads/PS/PS-Conflict%20of%20Interest.pdf ? Accessed 5 June 2020. Checketts JX, Sims MT, Vassar M. Evaluating industry payments among dermatology clinical practice guideline authors. JAMA Dermatol. 2017;153:1229–35.

10. Campsall P, Colizza K, Straus S, Stelfox HT. Financial relationships between organizations that produce clinical practice guidelines and the biomedical industry: a cross-sectional study. PLoS Med. 2016; 13:e1002029. 11. Taylor R, Giles J. Cash interests taint drug advice. Nature. 2005;437(7062):1070–1. 12. Norris SL, Holmer HK, Ogden LA, Selph SS, Fu R. Conflict of interest disclosures for clinical practice guidelines in the national guideline clearinghouse. PLoS One. 2012;7:e47343. 13. Loewestein G, Sah S, Cain DM.  The unintended consequences of conflict of interest disclosure. JAMA. 2012;307:669–70. 14. Silverman GK, Loewenstein GF, Anderson BL, Ubel PA, Zinberg S, Schulkin J. Failure to discount for conflict of interest when evaluating medical literature: a randomized trial of physicians. J Med Ethics. 2010;36:265–70. 15. American Academy of Dermatology. Evidence based clinical practice guidelines. Available at: https:// server.aad.org/forms/policies/uploads/ar/ar%20evidence-based%20clinical%20practice%20guidelines. pdf ? Accessed 5 June 2020. 16. Stoff BK.  A case against in-office sales of skincare products. J Am Acad Dermatol. 2019;S0190-0622(19): 32652-0. https://doi.org/10.1016/j.jaad.2019.07.111.

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© Springer Nature Switzerland AG 2021 L. Bercovitch et al. (eds.), Dermatoethics, https://doi.org/10.1007/978-3-030-56861-0

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A–C

Index A Access to care  292–294 Adolescent 143 Adolescent decision-making  42 Advertising 334–338 Aesthetic  414, 415 Aesthetic dermatology  94 Age of viability  148, 149, 152 Aging, of physician  94 Alcohol abuse, impaired behavior  236 Alcoholics anonymous  240 Alternative medicine  90 American Academy of Dermatology (AAD) –– conflict of interest management procedure  51 –– dermatopatholog 318 –– dermatopathology 318 –– physician extenders, guidance of   79, 202 American Board of Dermatology  9, 216, 252, 405 American Board of Medical Specialties  252 American Medical Association (AMA) –– botulinum toxin injections  101 –– dermatopathology  254, 311, 320 –– physician 334 American Psychiatric Association (APA)  98, 239 Application process  384, 390–393 Assent  17, 40, 41, 43, 96 Atopic dermatitis treatment, conflicts of interest  44, 450 Author anonymity  188, 426 Authoritative parenting  41 Authorship 190 Authorship credit  190 Autonomy  4, 8, 42, 44, 45, 47, 106, 107, 109, 128, 129, 136, 137, 141, 178, 228–230, 261, 262, 434, 435, 439–441 –– limits of   296

B Bartering 174 Basal cell carcinoma  166 Bedside teaching  408 Belmont Report  435, 436, 438 Beneficence  8, 286, 287, 320, 329 Benevolent deception  135, 136 Best interest  41, 42, 45, 46 Bigoted patient  217 Bioethics 172 Biopsy  133, 135, 137 Blinding  426, 427, 430 Body dysmorphic disorder  94, 98 Botulinum toxin injection  45 Boundary crossings  162–165, 167, 174

Boundary violations  162–164, 166, 167, 170, 172–174, 365 Burnout  242, 246, 247 Byline integrity. See Ghost busting, dermatology publications 426 Bystander phenomenon  71

C Capacity  261, 264 Capacity assessment  15, 21 Care of family members  178 Care of underserved patients  282 Carrier testing  26 Cellulite 260 Clinical ethics teaching. See Teaching, for clinical ethics 9 Clinical trial  436, 437 Code of conduct  272 Collegiality  262, 263, 279, 283 Common rule  435 Complementary and Alternative Medicine (CAM)  214, 219 Complementary medicine  89, 90 Concierge dermatology  343, 345 Concierge medicine  344, 346 Confidentiality –– breach of   63, 441 –– in iPLEDGE program  142 –– in teledermatology  64 Conflicts of interest  193, 319 –– atopic dermatitis treatment  44, 88 –– cutaneous T-cell lymphoma  27, 173 –– definition 446 –– eliminating 193 –– ethical considerations  27, 79 –– financial  76, 88, 109, 115 –– financial inducements  88 –– pharmaceutical manufacturer lecture  26, 352 –– policies and remedies  5, 201, 245 –– psoriasis treating  90, 109, 110, 127 Consequentialism  4, 7, 78, 79 Continuing medical education  252 Contraception  141, 144, 145 Corporate medicine  305 Corporatization 302 Cosmetic dermatology  94, 95, 97, 98, 101 Cosmetic procedural training  45, 78, 95, 97 Cosmetic procedures  97, 98, 102 Cosmetics 419 Cost-effectiveness 254 Cultural competency  216, 217, 219 Culturally sensitive care  216 Cyclin dependent kinase 2A (CDKN2A)  32

456 Index

D Decision-making 149 Declaration of Helsinki  434, 437 Delusions of parasitosis  109 Deontology  6, 7, 70, 79, 81, 252 Departmental hierarchy  201 Dermal nevi  127 Dermatoethics  94, 178, 405, 407 Dermatologic enhancements  97 Dermatologic obstetrics  155 Dermatologic procedures  97, 98 Dermatology  86, 88, 254 –– access  342, 345 –– hospitalist 260 –– residency training  403 Dermatopathology –– biopsy specimens samples  320 –– clinical practice  35, 47, 128, 306 –– fellowship training  319 –– patient care  260, 273, 311, 320 –– unethical testimony  99, 172, 178 Dignity  278, 279, 288 Direct-to-consumer  26, 60, 89 –– applications 66 Discount program  352–354 Disruptive physician behavior  245 Diversity  385, 390, 393, 394 Doctor-patient relationship  65 Double-blind peer review  426, 427 Duty  255, 256 Duty-based ethics  70, 305 Duty to treat  268, 269, 342, 346

E Education  414, 416, 417 Elder abuse  20, 21 Electronic medical record  143, 246, 260, 318, 438, 439 Emancipated minors  40 Enhancement  28, 29 Epidemics  268, 271, 274 Ethical dilemmas  402, 411 Ethics  4–7, 9, 10, 72, 86, 178, 366 –– of caring  293 –– of cosmetic dermatology  96 –– in dermatology  76, 95, 97, 173 Expert witness  318, 322–324 Expressed consent  268, 269

F Facebook  189, 191, 192, 195 –– HIPAA violation  195 –– patient-physician relationship  186, 193 –– protected health information  42 –– unprofessional online content  190 Family conflict  16, 22, 106 Federal Trade Commission  334, 335

Fellowship 392 Fiduciary  268, 270 Financial conflict of interest  88, 446 Food and Drug Administration (FDA), isotretinoin 140 Formal mentoring  361, 365 Free product  416, 418 Free skin cancer screenings  293–295 Front door consent  440, 441 Futile care  21, 126 Futility 126

G Gender identity  224, 228–230 Gene expression profiling  30 Genetic counseling  31 Genetics  26, 29, 30, 32, 37 Genomics  28, 35 Geriatric dermatology  15 Ghost busting, dermatology publications –– authorship credit  429 –– guest authorship  429 Gift-giving  173, 174 Gifts 170–172 –– on cultural basis  171 –– definition 170 –– extravagant  170, 174, 175 –– holiday 170 –– motives 170 –– reasons for offering  19 –– strategies for rejecting  175 –– thumb rules  175 Global health  50, 51, 54, 57 Good clinical practice (GCP) guidelines  435 Good Samaritan  71, 72 Grandfathering 253

H Health care disparities  278, 280, 281 Health disparities  60, 66, 211, 215, 224–226, 228, 278, 280, 281, 288 Health Insurance Portability and Accountability Act of 1996 (HIPAA)  42, 46, 63, 187, 191, 195, 284 Healthcare insurance  46 Hidden curriculum  363

I Impaired behavior –– aging 247 –– disruptive behavior  243, 244 –– intervention  22, 41, 57 –– recovery contracts  241 –– substance use and mental illness  42 Impaired physician  237, 241, 247 Implied consent  268, 269 Inappropriate behavior  240, 241, 244

457 Index

D–P

Infantile hemangioma  45 Informal mentoring  360 Informed-consent  14, 15, 34, 35, 60, 61, 63, 65, 106, 229, 230, 362, 403, 404, 434–436 –– epidermolysis bullosa, ethical practices  32 –– in pediatrics  32, 41 –– in teledermatology  60 Informed permission  40 Injections 418 Instagram  189, 191, 192, 195 Institutional review board  438 Insurance  350, 352–355 Integrative medicine  86–88 Integrity  324, 329, 385, 386, 395 International Committee of Medical Journal Editors criteria (ICMJE)  429 International Ethical Guidelines for Biomedical Research 435 Internet  124, 129, 427 iPLEDGE 140–143 Isotretinoin  140, 143, 144 –– birth malformations  140 –– confidentiality  141, 142 –– ethical concern  142 –– in minor  143 –– for nodulocystic acne  142 –– reproductive autonomy  141 –– right of conscience  143 –– Roche Pregnancy Prevention Program  140 –– for scarring nodular acne, chronic  143

Medical student education  403 Medication cost  355 Melanoma, malignant  87, 127, 153 Mental Illness  235–237, 243, 247 Mentee  361, 362, 365, 366 Mentor  360–362, 365, 366 Mentor-mentee relationship –– informal mentoring  360 –– termination 145 Minor  40, 41, 45, 46, 142 –– contraception for  142 Moral  4–9, 29, 71, 75, 79, 100, 106, 108, 114, 115, 117, 121, 125, 126, 132, 148, 150, 162, 214, 241, 278, 282, 283, 287, 292, 293, 354, 355, 420 Moral distress  287 Morality 4 Mutuality 29

J

O

Joint Commission on Accreditation of Healthcare Organizations (JCAHO)  245 Just allocation of limited resources  297 Justice  4, 6, 8, 9, 144, 217, 218, 229, 230, 278, 280, 281, 286, 293, 294, 296

L Libertarianism 255 Licensure 240

M

Maintenance of certification  252 Marketing  188, 189, 194, 196 Marketing dermatology practices  189, 190 Match 384–389 Maternal-fetal relationship  148, 149, 155 Mature minors  17, 40 Medical Board  242 Medical decision-making  14–16, 124, 127–129, 162, 229 Medical education  405 Medical error  132, 134 Medical ethics  307, 308, 334 Medical malpractice  318 Medical mission  50

N National Resident Matching Program (NRMP)  384, 386, 387, 389 Needlestick  134, 137 Nevi, dermal  127 NF-1 neurofibromatosis  75 Noncompliance  116, 118–120 Non-maleficence  4, 6, 8, 134, 145, 326, 329 Non-physician provider  78–82 Nurse practitioner  78, 81

Oral isotretinoin, for acne  226 Out-of-pocket  352, 353

P Parasitosis, delusions of  109 Paternalism  29, 106, 124, 128, 230, 322 Patient compliance  114 Patient decision aids  16, 22 Patient disclosure  133, 135 Patienthood of fetus  148, 149 Patient-physician relationship  186, 187, 192 Patient privacy  186, 188, 190, 191, 193, 196 –– and confidentiality  63 Pediatric dermatology  47 Peer review  428–430 Physician assistant  78, 81 Physician–patient relationship  294 –– boundaries 163 –– charitable donations  166 –– fiduciary relationship  163 –– post-consultation lingering  164 –– slippery slope  164 Physicians’ Health Programs (PHPs)  237 Placebo 436–438 Plaque psoriasis  109, 127, 284

458 Index

Precision medicine  26 Predatory open access journals  426–428 Pregnant patient autonomy  148 Prescribing practice  179 Principles of biomedical ethics  404 Principlism  4–6, 8 Procedural addiction  95, 97 Professional boundaries  171, 172, 187 Professional ethics  162 Professionalism  7, 9, 174, 253, 255, 338, 366, 384–386, 406–408 Public health  29 Publication ethics  428

R Reciprocity  29, 268, 270, 271 Research ethics  35, 437 Residency  384, 386–395 Residency program  390, 391, 394, 396

S Safety  132, 134, 136 Salami slicing  426, 428, 429 Self-promotion  334, 335, 337 Self-regulation  252, 253, 255, 256 Shared decision-making  16, 17, 19, 124 Sliding scale fees  345 Slippery slope  110, 164, 165 Social justice  385 Social media  186–191, 195 –– Facebook –– HIPAA violation  195 –– patient-physician relationship  186 –– protected health information  42 –– unprofessional online content  190 Social support  361 Special training  268–270 Special trust  268 SPOTme® 292–294 Stark Law  318, 327 Store-and-forward telemedicine  60 Substituted judgement  17 Supererogation 4 Superficial 127 Surrogate decision makers  17, 19 Synchronous telemedicine  60

T T-cell lymphoma, cutaneous, conflicts of interest 27 Teaching  418, 419 Teaching ethics  405 Teledermatology 60–67 –– confidentiality  35, 181 –– ethical issues  51

–– Health Insurance Portability and Accountability Act  186 –– informal 41 –– informed consent  14, 35 –– medical information storage  20 –– protected health information  67, 186 –– telemedicine types  65 Telemedicine  60, 62, 65, 66, 263 Teratogenicity 140 Termination, mentor-mentee relationship  360 Theories of biomedical ethics  404 Therapeutic non-adherence  114 Therapeutic privilege  106–108, 110, 111, 136 –– American Medical Association  106 –– concept 136 –– consequentialist arguments  106 –– deontological arguments  79 Time-limited trial  297 Trainee  384, 386, 390, 396 Training  416, 418, 419 Transformational 362 Transgender 143 –– issues 224 Trust  16, 29, 36, 41, 43, 53, 114, 116, 121, 137, 165, 172, 186–188, 193, 212, 234, 247, 304, 337, 361, 426 Truth disclosure  106, 107 Tuskegee syphilis study  212, 285 Twitter  188, 189

U Unsolicited diagnosis  70–72 Unsolicited medical opinion –– bystander phenomenon  71 –– legal issues  118 –– malignant melanoma  127 –– moral obligation  70 –– NF-1 neurofibromatosis  75 –– sunburn 75 Utilitarianism  6–8, 254, 255, 293, 295, 304

V Virtue-based ethics  4, 6, 7 Volunteer  50–53, 57 Vulnerable population  14, 40, 41

W Workplace romance  200, 201, 208 Worried well  292, 295–297 Wrong-site surgery  135, 137

Y Youth risk behavior surveillance system  142