The Complex Role of Patient Trust in Oncology (Psychiatry Update, 5) [1st ed. 2024] 3031485564, 9783031485565

Table of contents :
Foreword
Preface
Contents
Contributors
Chapter 1: The Relational Component of Trust in Oncology
Introduction
Background
Who Says Trust Is Lost?
Why Examine Trust in Relation to Oncology Practice?
Why Has Trust Disappeared?
A Question of Professionalism?
An Increasing Concern for Trustworthiness and Difficulties Evaluating It
Dismissing the Basic Tenets of Scientific Medicine
Physician as Employee and the Commodification of Medicine
Societal Expectations in Risk Perception and Risk Acceptance
Discussion
What Do We Even Mean by Trust in Medicine and Oncology?
A Framework to Understand Trust in Medicine and Oncology
Loss of Trust in Medicine: A Relational Perspective
Other Considerations in Restoring Trust
The Problem with Commodification of Trust
The Problem with Guidelines and Regulations Meant to Enhance and Restore Trust
Reconsidering Trust Loss in Medicine and Oncology
Relevance to Oncology
Restoring Trust
Conclusion
References
Chapter 2: Fiduciary or Not? Healthcare Systems and Oncology
Components of the Healthcare System
The Case of Denied Services
Trust in Healthcare System Components
The Knowledge Gap Disparity
Medical Education and Trainees
Fiduciary Care for the Non-trusting
The Value Paradigm
Summary
References
Chapter 3: Medical Oversight and Public Trust of Medicine: Breaches of Trust
Introduction
Breaches of Trust
Invasion of Privacy
Physical Privacy
Informational Privacy
Decisional Privacy
Associational Privacy
Withholding Information
Fear of the Unknown: Risk Disclosure and Code Status
Omission of Error
Conflicts of Interest
Paternalism in Medicine
Informed Consent
Nuremberg Code
Declaration of Helsinki
Belmont Report
Abuse of Power
Spectrum of Coercion
Respect for Persons
Contemporary Breaches of Trust
Social Media and Health Information
Internet Misinformation
Professionalism and Social Media
Personal Healthcare Technology
Big Data
COVID-19 and Vaccination Hesitancy
Relevance for Oncology
Recommendations for Establishing Trust
Conclusion
References
Further Reading
Clinical Ethics
Applications and Recommendations in Clinical Practice
Chapter 4: The First Encounter with Oncology: Patient Experience and Requisite Trust
Anatomy of the First Encounter
Physician Competence and Trust
Death, Distress, and Fear
Conclusion
References
Chapter 5: The Role of Trust in Oncology Across Populations and Cultures: Implications for Health Inequities and Social Justice
Introduction
The Socioecological Model for Trust
Individual-Level Barriers and Facilitators to Trust
Interpersonal Factors
Community and Organizational Level Factors
Policy Level Factors
Factors Impacting Trust: global perspective
Evidence-Based Best Practices
Culturally Tailored Care and Resources to Improve Trust
Community Health Workers, Promotores, Patient Navigators, and Lay Health Worker Models
Patient-Centered Communication to Enhance Patient Activation and Trust
Storytelling and Narrative Techniques
Community Engagement for Building Trust
Employer-Based Initiatives for Transparency and Trust
Conclusion
References
Chapter 6: Patients on the Internet: The Information Age and Trust in Medicine, Conspiracies, and Proliferation of False Information
Introduction: The Problem of Trust in the Information Age
Provider Patient Relationship
How Did We Get Here?
From Print to Digital
Free and Public Accessibility
Becoming Literate
The Rise of the “Infodemic” and Potential Health Misinformation
Potential Barriers to Trust in the Internet and Health Care
Read Between the Lines
Gathering Information
Cultural Differences and Disparities in Medical Information Use
Case Continued: Jim
Misinformation
Correcting Misinformation
Case continued: Jim
Privacy
Getting Support from Social Media
Social Media Use for Delivering Interventions
Setting Guidelines and Policy Regarding Risk for Professional Use
Guideposts for Improving Trust in the Use of the Internet and Oncology
Practical Suggestions for Becoming a Smarter User of the Internet for Medical Information
Conclusion
References
Chapter 7: Patients and Trust: The Impact of Advocacy to Advance Patient-Centered Care
Introduction
Post-positivism as a Theoretical Grounding for Patient Trust
History of Paternalism in Medicine
Trust in Whom?
Patient Advocacy
Cancer Advocacy
Patient Advocacy Organizations
Transparency and Inclusion of Patients in Health Care
Oncology Clinical Pathways
Copayment Accumulator Programs
Value in Cancer Care
Critical Factors for Establishing and Maintaining Patient Trust
Conclusion
References
Chapter 8: Trust and the Role of Attachment: Implications for Oncology
Introduction
Case 1: Activation of the Attachment System
History of Attachment Theory
Attachment in Adults
What Is the Relationship Between Attachment and Trust?
Why Is Attachment a Key Component to Trust in Oncology?
Why Do Some Patients Trust While Others Do Not?
Responding to Different Attachment Styles: Interventions and the Deliberation of Trust
Case 2: Oncology Inpatient Setting and Insecure Attachment Style in the Inpatient Setting
Case 3: Avoidant Attachment at the End-of-Life
Specific Clinical Scenarios
Conclusion: Attachment Style and Its Association with the Concept of Patient Centered Care
References
Chapter 9: Patient Trust Through the Lens of Integrative Oncology
Introduction
Trust-Related Issues in the “Alternative Medicine” Setting
The “Alternative Medicine” Patient’s Health Belief-Model
The Healthcare Provider’s Perspective of Trust
Establishing Trust Across the HBM of the Patient and HCP
Promoting Health vs. Treating Disease
Accusation vs. Reconciliation and Innocence
From Traditional to Integrative Medicine
Issues of Trust in the Integrative Medicine Setting
Practical Approach to Communication and Building Trust with the “Other” Patient
Conclusions
References
Chapter 10: Building Trust and Future Directions
Introduction
Understanding Trust from the Developmental Narrative
Trust Established and Sustained by the Virtues of the Mature Physician
Impact of Education on Trust
Teaching the Virtues of Medicine to Students/Trainee Doctors
Role of Supervision, Modelling, the Hidden Curriculum
Role of Communication Skills Training to Foster Relationships
Question Prompt Lists to Foster Patient Advocacy
Audio-Recording Important Clinical Consultations
Multidisciplinary Team Meetings
Responding to Side-Effects and Medical Errors
Openness to Discuss Death, Dying and the Existential Realm
Impact of the Media and Public Health on Trust
Education of the Public—Building Health Literacy in Societies
Reliability of the Internet and Other Sources
Countering Misinformation
Case Study
Translating Complex Medical Principles
Culture, Language and Explanatory Models of Illness
National Models of Health Care in a Global World
Future Directions and Conclusion
References
Further Reading
World Health Organization Publications
Index

Citation preview

Psychiatry Update 5 Series Editor: Michelle B. Riba

Daniel C. McFarland Luigi Grassi Samuel M. Silver Michelle B. Riba   Editors

The Complex Role of Patient Trust in Oncology

Psychiatry Update Volume 5

Series Editor Michelle B. Riba, University of Michigan, Department of Psychiatry University of Michigan Eisenberg Family Depression Center Ann Arbor, MI, USA

Psychiatry Update will encompass all areas of psychiatry research and clinical diagnosis and treatment. Chapters will publish randomly though out the year culminating in volumes throughout the year.

Daniel C. McFarland  •  Luigi Grassi Samuel M. Silver  •  Michelle B. Riba Editors

The Complex Role of Patient Trust in Oncology

Editors Daniel C. McFarland Psychiatry Dept., Wilmot Cancer Center University of Rochester Rochester, NY, USA Samuel M. Silver Assistant Dean, Emeritus, for Research University of Michigan–Ann Arbor Ann Arbor, MI, USA

Luigi Grassi Neuroscience and Rehabilitation, Institute Psychiatry University of Ferrara Ferrara, Italy Michelle B. Riba Department of Psychiatry University of Michigan Ann Arbor, MI, USA

ISSN 2524-8316     ISSN 2524-8324 (electronic) Psychiatry Update ISBN 978-3-031-48556-5    ISBN 978-3-031-48557-2 (eBook) https://doi.org/10.1007/978-3-031-48557-2 © The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 This work is subject to copyright. All rights are solely and exclusively licensed 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 Paper in this product is recyclable

Foreword

Trust is of paramount importance between a patient and a provider in oncology. After a diagnosis of cancer is rendered by the provider, the reaction of the patient varies widely depending on the individual, their personality, previous experiences, and support system. A range of emotions is evoked, but the core of this critical encounter is the fear of the cancer patient who faces the existential threat, and the formation of a therapeutic relationship that is built upon trust. From that point on, the patient will go through various stages of coping and adjustment during the course of cancer treatment in partnership with the oncologist. For the successful journey toward, hopefully, remission, trust in the provider-patient relationship is critical. Yet, despite its fundamental importance in our clinical practice, very little is written or studied about trust in the field of medicine, and this book is a welcome, if not long overdue, and a valuable addition to the field. The biopsychosocial model proposed by George Engel in 1977 provides a framework for the consideration of trust in the provider-patient relationship. According to this model, the human illness experience and healthcare delivery are shaped not only by biological factors but also by psychological and sociocultural factors [1]. By adopting a biopsychosocial approach, a provider can understand their patients as unique individuals with a specific set of cultural beliefs and social determinants that influence their health. This understanding leads to more personalized and patient-­ centered care, where providers take into account not only the medical condition but also the patient’s psychological state, lifestyle, family support, and environmental factors. Later iterations of the biopsychosocial model have gone on to emphasize its relational importance, which fundamentally relies upon trust [2]. Application of the biopsychosocial model suggests that effective communication and empathy are the keys to building trust in the physician-patient relationship, and understanding the patient’s perspective and involving them in shared decision-making are key elements of providing comprehensive care that addresses all aspects of the individual’s health and well-being. However, trust in the patient-provider relationship is increasingly threatened like never before in oncology. After all, trust is a complex and multidimensional concept that contributes to the formation and maintenance in any relationship, and nearly all v

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components of trust are under scrutiny in our healthcare system. There are three essential traits of a provider that cultivate trust in a patient: expertise, benevolence, and integrity. However, a glut of unfettered information available through the internet, social media, and, more recently, chatbots powered by artificial intelligence, has added to the second-guessing of the expert advice rendered by the provider. We often talk about how critical it is to empower patients to participate in shared decision-­making with their providers, but it is increasingly unclear who the participants are in the shared decision-making process. Benevolence of a provider is also increasingly questioned in the monetizing environment within the healthcare system that incentivizes provider productivity. Sensational media coverage of rogue providers who chase greed over the welfare of patients erodes the perception of integrity among the provider. Perhaps, the biggest threat of all, providers are spending less time with individual patients. A recent study [3] revealed that physicians spent an average of 16 min and 14 s per encounter using electronic health records, and the majority of the limited time was spent on chart review (33%), documentation (24%), and ordering (17%). Also, increasing use of virtual encounters has also reduced the amount of in-person contact between a provider and patient. How do you build trust beyond a passing relationship between two persons when there isn’t enough contact point between them to begin with? The authors of this book courageously wrestle with this challenging quagmire of building a therapeutic relationship in the changing times and discuss them thoughtfully, if not offering solutions. Another challenge is the level of trust that is required to ensure effective healthcare delivery has arguably increased in the field of oncology. These advances in oncologic science and medical technology have clearly offered more hope for the patients than ever before, but modern cancer care relies upon more intricate coordination between patients and providers. However, accessing the hyped scientific and technological advances are frequently difficult or even impossible to access for myriad reasons, and this leads to sowing mistrust in the provider-patient relationship. Often, patients, and the providers, are overwhelmed by this complexity while others are reluctant to trust even prior to diagnosis. For many, there is a sense that technology has intruded the therapeutic alliance within the provider-patient relationship, and the human aspect of care remains buried underneath the labyrinth of our healthcare system. As practitioners of the biopsychosocial model of care, an oncologist must confront the challenges involved in cultivating trust in our patient-provider relationship in our current healthcare environment that seems increasingly dehumanizing. How much do we care to understand patient trust, its role in providing care (i.e., its importance), and what we can do to re-establish and cultivate it? This book addresses these questions conversationally and thoroughly. The answers are nuanced and foundational, especially since assumptions about the medical paradigm are challenged. We are living in an era of an unprecedented array of treatment options for cancer, but oncologists must first earn the trust of their patient before helping them navigate the tumultuous healthcare environment. This book is a surprisingly comprehensive,

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in-depth, and well-researched resource for those who are curious about where trust has gone and why, and how to cultivate and re-establish trust in the current medical environment. Trust is intercalated into all relational aspects of care. In short, this book provides a unique perspective on the clinician-patient relationship and the trust involved in making that relationship beneficial and salutary for patients and their families as recipients of cancer care. References 1. Engel GL. The biopsychosocial model and the education of health professionals. Gen Hosp Psychiatry. 1979;1(2):156–65. https://doi.org/10.1016/0163-­ 8343(79)90062-­8. 2. Borrell-Carrio F, Suchman AL, Epstein RM.  The biopsychosocial model 25 years later: principles, practice, and scientific inquiry. Ann Fam Med. 2004;2(6):576–82. https://doi.org/10.1370/afm.245. 3. Overhage JM, McCallie Jr D. Physician time spent using the electronic health record during outpatient encounters: a descriptive study. Ann Intern Med. 2020;172(3):169–74. Hochang Benjamin Lee Chair, Department of Psychiatry University of Rochester Medical Center Rochester, NY, USA

Preface

Medical education is Socratic. We are taught to ask why about everything under the sun or under the skin, as it were. Yet, we recall no lecture asking why a patient would or would not trust a procedure, a treatment, or a doctor. It is as if the very structure of the doctor-patient relationship is a given, not to be questioned, altered, or adulterated. The medical community has not asked the question that supports its fundamental utility. As a result, would-be patients, society, and economic pressures have asked the question for us. In fact, they’ve already answered the question. Many of us will not accept what medicine has to offer. There are plenty of reasons a person may or may not accept care. Of primary importance is trust. Underlying many surface-level reasons for declining care is a lack of trust. The indignantly ill person who perceives a lack of dignity in becoming a patient may be exercising her individual right to refuse medical care but may also be expressing a lack of trust. All medical situations make people vulnerable to disease and its treatment. Few diseases, however, conjure up as much controversy in trust as cancer. Its origin, meaning, and prognostication are complicated by imperfect science, societal expectations, and fears. A person with cancer is vulnerable to perceptions of what cancer is and what it means for everyone involved. In other words, becoming a cancer patient has a particular meaning that is distinct from other existentially threatening maladies. No one plans on getting cancer. Every diagnosis is a personal emergency requiring rapid decisions that are either buoyed by trust or not. In most instances, there is no luxury of time to consider if one trusts and what one needs to trust. Dis/mis/trust appears automatically and plays an integral role in how a patient engages with oncology care. The presence or absence of trust depends on the patient’s clinical situation and personal background and is generally taken for granted. Just as medical education may be reluctant to question the relevance of trust to the doctor-patient relationship, patients who have had a lifetime to form their perceptions of medical care and its utility are reluctant to question their fundamental attitudes about medicine, especially during a crisis. For starters, medicine has not truly considered the virtue involved in being a patient. This is unfortunate since patients are our business. Out of fairness, waiting ix

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gets a bad rap in society as well even though it is something that most of us will spend an enormous proportion of our lives doing. That society appears to value activity over passivity is largely artifactual and should not be intrinsically tied to human dignity. But many patients feel that it is, which is more unfortunate than verifiable. No better explanation exists for the virtue of waiting or being a patient than that penned by W.H. Vanstone in the Stature of Waiting [1]. Although it is a theological book, it has sociological implications for Western cultures that are relevant to being a patient and trusting. Its premise is that connotations to be active, busy, productive, self-assured, and independent are seen as good while being idle, passive, receiving, and dependent is rarely seen as virtuous. Vanstone contends that the biblical portrayal of God as active doer greatly influences millennia of Judeo-­ Christian thought. The increasing complexity of our medical systems of care precludes patients from doing and requires passivity to a large extent in order to receive care. The problem that Vanstone delineates is the following: For the foreseeable future the individual is likely to find herself, in almost every aspect of life, increasingly dependent on a complex system of organization and technology, and increasingly limited in her possibilities of private initiative.

Oncology is the perfect example of systemic and organizational complexity. How does a patient transition from being an active and competent adult, self-assured, and dignified to accepting the passivity required to accept what modern medical care has to offer? To accept this passive role requires trust. Vanstone makes the case to appreciate the “range and variability of human passivity” in seeing receptivity as a truly dignified part of the human endeavor whose consequences endure despite the lack of a tangible objective in productivity. We play various roles in life which are virtuous and not all of which lead to object productivity. The value attached to these distinct roles is somewhat arbitrary and culturally or historically bound. The adaptation to a life with cancer becomes even more onerous when one must deal with values attached to productivity or passivity. According to Vanstone, reconsidering the virtue in waiting will assist in rediscovering the dignity which rightly belongs to the patient. An honest retort may be that oncology has become increasingly patient centered and engages patients’ wishes and values. It may be true that the patient’s voice is heard more now than ever before. Yet, this does not appear to be correlated with trust. Patients who perceive the presence of divergent interests in the complicated medical systems providing their care are unlikely to trust. Patient centeredness is a laudable goal but is not by itself the antidote to distrust or mistrust. Few initiatives have considered the underlying basis of trust and its implications for medical care even while pursuing patient centeredness. Consequently, would-be patients who do not trust and refuse the patient role are invisible to the medical system to which they are not a part. This is a problem in oncology, especially for patients who forgo curative intent and life-prolonging treatments. Medical systems of care need to consider trust as a vital component of patient-centered care. Each day, new patients come into cancer centers while other would-be patients opt for non-evidence-based treatment or no treatment entirely. These would-be

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patients are essentially silent and invisible to the oncology community. Their needs are rarely considered or sought. Statistically, they are not factored into the success of the oncology community. Survivorship requires the acceptance of cancer care treatment. This conundrum raises the following questions: Is the field of oncology obligated to search for ways to make the untrusting trust what oncology has to offer? This book answers the question affirmatively. It should not need to be said that trust is an integral component to effective and humane medical care. But it needs to be said today, again, more than ever. Oncology care cannot be delivered outside of a trusting relationship. And it is incumbent upon the field to make its array of advanced treatments available to all segments of the population. Meeting the needs of the untrusting is harder. It requires more effort and energy. It asks us to reflect upon our systems of care on all its levels. It requires us to evaluate the dynamics of communication and power inequities inherent in the doctor-patient relationship. Oncology practice is not only deciding on which treatments and when to give them, but delivering those decisions aligned with what the patient has come to understand and responding to those needs. Meeting the needs of the untrusting requires the suspension of judgment and the consideration of patients’ vulnerability in the face of complexity. This book presents a kaleidoscopic portrait of trust in medicine and oncology that aims to be comprehensive. Each chapter highlights a different aspect of trust in the medical setting, many of which are specific to oncology. For example, trust is fundamental to the first encounter with an oncologist. The anatomy of that encounter is explored. The elements of trust are investigated from the institutional or fiduciary perspective to the nuances of the personal and individual encounters with patients. Several key factors are relevant to trust within those encounters such as the patient’s background, attachment style, and the perception of ethically responsible commitment. Our hope is that once the reader starts thinking about trust, she will see its presence or absence manifested throughout clinical practice and systems of care. Trust needs to be an ongoing conversation as systems of medical care and technology strive to meet patients’ needs and improve outcomes. More than anything, we hope for dialogue and further collective understanding. Trust has always been an essential component of medical care. But now, we need to be talking about it, teaching it, and most importantly, not taking it for granted. Reference 1. Vanstone WH. The stature of waiting. New York: Morehouse Publishing; 1982. Rochester, NY, USA Ferrara, Italy  Ann Arbor, MI, USA  Ann Arbor, MI, USA 

Daniel C. McFarland Luigi Grassi Samuel M. Silver Michelle B. Riba

Contents

1

 The Relational Component of Trust in Oncology ��������������������������������    1 Daniel C. McFarland, Luigi Grassi, and Michelle B. Riba

2

 Fiduciary or Not? Healthcare Systems and Oncology��������������������������   25 Randall F. Holcombe

3

Medical Oversight and Public Trust of Medicine: Breaches of Trust������������������������������������������������������������������������������������������������������   35 Shannon L. Mazur and Jennifer B. Sharma

4

The First Encounter with Oncology: Patient Experience and Requisite Trust����������������������������������������������������������������������������������   57 Amith Ahluwalia and Andrew Epstein

5

 The Role of Trust in Oncology Across Populations and Cultures: Implications for Health Inequities and Social Justice��������������������������   71 Emily H. Wood and Manali I. Patel

6

Patients on the Internet: The Information Age and Trust in Medicine, Conspiracies, and Proliferation of False Information��������   93 Andrew J. Roth, Jacob A. Lowy, and Konstantina Matsoukas

7

Patients and Trust: The Impact of Advocacy to Advance Patient-Centered Care ����������������������������������������������������������������������������  117 Elizabeth Franklin and Kim Thiboldeaux

8

 Trust and the Role of Attachment: Implications for Oncology ����������  129 Daniel C. McFarland, Andrew Edelstein, and Yesne Alici

9

 Patient Trust Through the Lens of Integrative Oncology��������������������  143 Eran Ben-Arye and Noah Samuels

10 Building  Trust and Future Directions����������������������������������������������������  161 Caroline M. Kissane and David W. Kissane Index������������������������������������������������������������������������������������������������������������������  179 xiii

Contributors

Amith Ahluwalia  Confluence Health, Wenatchee, WA, USA Yesne Alici  Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA Weill Cornell College of Medicine, New York, NY, USA Eran  Ben-Arye  Integrative Oncology Program, The Oncology Service, Lin, Zebulun, and Carmel Medical Centers, Clalit Health Services, Haifa, Israel Rappaport Faculty of Medicine, Technion-Israel Institute of Technology, Haifa, Israel Andrew Edelstein  Department of Psychiatry, Weill Cornell Medical College, New York, NY, USA Andrew Epstein  Memorial Sloan Kettering, New York, NY, USA Elizabeth Franklin  Cancer Support Community, Washington, DC, USA Luigi  Grassi  Department of Neuroscience and Rehabilitation, Institute of Psychiatry, University of Ferrara, Ferrara, Italy Randall F. Holcombe  Division of Hematology and Medical Oncology, University of Vermont Cancer Center, J.  Walter Juckett Chair in Cancer Research, Burlington, VT, USA Caroline  M.  Kissane  Department of Emergency Medicine, Monash Children’s Hospital, Monash Health, Clayton, VIC, Australia Department of Emergency Medicine, Royal Children’s Hospital, Parkville, Victoria, Australia David W. Kissane  The University of Notre Dame Australia, and The Cunningham Centre for Palliative Care Research, St Vincent’s Hospital, Sydney, NSW, Australia Monash University, and Cabrini Health, Clayton, VIC, Australia Jacob A. Lowy  University of Michigan Medical School, Ann Arbor, MI, USA xv

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Contributors

Konstantina  Matsoukas  Memorial Sloan Kettering Cancer Center Medical Library, New York City, NY, USA Shannon L. Mazur  Department of Psychiatry, Yale School of Medicine, Yale New Haven Hospital, New Haven, CT, USA Daniel C. McFarland  Department of Psychiatry/Wilmot Cancer Center, University of Rochester Medical Center, Rochester, NY, USA Manali I. Patel  Division of Oncology, Stanford University, Stanford, CA, USA Medical Services, VA Palo Alto Health Care System, Palo Alto, CA, USA Michelle B. Riba  Department of Psychiatry, University of Michigan Rogel Cancer Center, University of Michigan, Ann Arbor, MI, USA Andrew J. Roth  Memorial Sloan Kettering Cancer Center, Weill Cornell Medical College, New York City, NY, USA Noah  Samuels  Center for Integrative Complementary Medicine, Shaare Zedek Medical Center, Faculty of Medicine, Hebrew University of Jerusalem, Jerusalem, Israel Jennifer  B.  Sharma  Department of Psychiatry, UMass Chan Medical School-­ Baystate, Baystate Medical Center, Springfield, MA, USA Kim Thiboldeaux  Cancer Support Community, Washington, DC, USA Cancer Support Community, Philadelphia, PA, USA Emily H. Wood  Division of Oncology, Stanford University School of Medicine, Stanford, CA, USA

Chapter 1

The Relational Component of Trust in Oncology Daniel C. McFarland, Luigi Grassi, and Michelle B. Riba

Introduction Like youth, trust is only fully appreciated when it’s gone [1]. To understand the nature of trust in medicine, one must understand that trust is relational [2]. Mistrust or distrust is felt when the patient-clinician relationship is fractured and trust evaporates [3]. Trust erosion or the generation of distrust implicate relational problems between the clinicians, institutions, and societies who provide healthcare and the patients, families, and loved ones who seek to restore heath [4]. In addition to understanding its relational nature, trust in medicine is indubitably an ethical issue and a professional and societal moral imperative. Contemplating loss of trust in medicine often leads to causal speculation of many factors related to contemporary medical practice. At the same time, a reasonable conclusion might be that loss of trust in medicine is multifactorial and simply not the result of a single greatest causative factor. One might look for causes of mistrust or distrust in addition to the absence of trust (i.e., the lack of its crucial ingredients). Such causal speculative factors fall short when applied to the vast variability of

D. C. McFarland (*) Department of Psychiatry/Wilmot Cancer Center, University of Rochester Medical Center, Rochester, NY, USA L. Grassi Department of Neuroscience and Rehabilitation, Institute of Psychiatry, University of Ferrara, Ferrara, Italy e-mail: [email protected] M. B. Riba Department of Psychiatry, University of Michigan Rogel Cancer Center, University of Michigan, Ann Arbor, MI, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 D. C. McFarland et al. (eds.), The Complex Role of Patient Trust in Oncology, Psychiatry Update 5, https://doi.org/10.1007/978-3-031-48557-2_1

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patient situations. A model to explain the generation and degeneration of trust in medicine is needed. Loss of trust means that patients do not believe doctors or healthcare institutions have their best interest in mind as a top priority. There are two ironies that run counter to this belief and potentially confuse the situation. Firstly, movements to protect patients’ interests have never been as highly visible and recognized as they are now [5]. Bioethics as a relatively nascent field grew from mistrust in medicine and the need to protect patients from harm. Interestingly, bioethics efforts towards respect for patient autonomy, recognizing patient values, preferences, and wishes as an extension of respect for persons, has not materialized a greater sense of trust in medicine [6]. Patient voice and organization around patient-centered medicine (e.g., shared decision making, non-paternalistic care) is stronger now than in the past. So, why would patients lose trust right when they have the greatest options and representation in medical decision making? Secondly, science and technology behind medical care has never been as advanced as it is presently. In oncology, patient outcomes such as survival and quality of life continue to improve as a direct result of these advances [7]. Yet, a substantial minority of patients with cancer do not avail themselves of this progress and many more remain incredulous of their benefits and suspicious of medicine’s motives [8]. Unfortunately, patients who opt out of standard oncologic care are essentially silenced by their own absence. These patients are not represented by the oncology patient community; little is done to understand or meet their needs. On the surface, respect for patient choice and autonomy may seem like good enough reasons to not consider this group’s representation or any imperative to meet their needs. It is their prerogative not to participate. But patient choice and autonomy are often undermined by poor physician communication and perhaps other systemic factors [9]. An initiative to reach this “untrusting” population has a moral underpinning and is consistent with the Apollonian mission of medicine. One may conclude that trying to reach a non-accepting, non-paying population is not a lucrative or productive endeavor. But service for community, that is public health, is imperative to medical practice according to all translated versions of the Hippocratic Oath [10]. Medicine must meet the needs of the public, which includes those patients who willingly opt out of their interactions with it. The Hippocratic Oath does not explicitly address treating the unwilling. But physicians in Greek society at the time the Hippocratic Oath was written were expected to be citizens of a known public and therefore politically active especially with regard to their trade [10]. Of course, oncologic care, vis a vis respect for persons and autonomy, should never be thrust upon someone who has conscientiously opted against care. But medicine has an ethical obligation to understand why patients have lost trust and to correct or restore trust to the greatest extent possible. A steep decline in trust was documented throughout the 1960s and has remained consistent through the present era [11]. The 1960s saw the end of what has been dubbed the ‘Golden Era’ of medicine [12]. This era was characterized by new treatments informed by burgeoning science that had improved largely as a result of

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World War II era efforts to understand illness. Also, payment structures were relatively uncomplicated, and safety and ethical oversight were almost non-existent by today’s standards [13, 14]. This was the pinnacle of trust in medicine, at least according to what has been documented. Despite continuous medical advances including those that brought improved greater safety and patient experience, process changes related to clinical oversight and safety beginning during the ‘Golden Era’ began a downward spiral of trust erosion in medicine [15]. For example, the topic of iatrogenesis and the inadvertent harms that come to patients who give themselves over to the medical establishment were uncovered and scrutinized by social justice movements and popular best-­selling books of the period such as Medical Nemesis: The Expropriation of Health by Ivan Illich [16]. Similar whistle-blower types of pronouncements not only brought public awareness to various safety issues but they also signaled the painful cost of medical advancements, which the medical community was not addressing at that time. Illich described three types of iatrogenesis. In addition to clinical iatrogenesis, he described social iatrogenesis or a reconfiguration of human experience in medical terms where all sorts of problems are amenable to medical intervention. Cultural iatrogenesis takes this tacit acceptance of medicalization a step further as it replaces “traditional ways of dealing with and making sense of death, pain, and sickness” [17]. The inadvertent cultural changes brought about by advancing science and technology during the twentieth century are perhaps most poignantly described by an additional fall of the ‘Golden Era’ of medicine book entitled Denial of Death by Ernst Becker. It described the ways in which culture (or society) mitigates the anxiety that death holds over human experience [18]. Becker highlighted that our technocratic culture was finding a maladaptive way of dealing with death by essentially denying it as opposed to incorporating it into the sacredness and acceptability of human experience. As the title suggests, the denial of death foreshadows the anxiety of those for whom denial does not fend off the realities of the all too real human experience. The tendency to create culture to fend off death anxiety is not unique to a modern or technocratic society but becomes increasingly relevant for our society with medical advances that are able to fend off death, or so it seems for a limited time. This cautionary tale of the ‘Golden Age’ of medicine along with naysayers or whistle-blowers like Illich and Becker remind us that medical advances and scientific competence only instill trust in medicine to a certain point. It is perhaps a great irony, that these same advances can have unforeseen consequences that undermine the very trust that is necessary for science to move forward. Another paradigmatic text of this era was The Structure of Scientific Revolutions by Thomas Kuhn. He described the presumptive expectation of objectivity in science, which most of us hold, and the reality that science is forever influenced by subjective and hidden agendas [19]. In other words, the belief in science as an objective entity free of human folly and foibles is farcical and a painful reality for its followers, namely the scientific community. This scientific introspection is quite necessary when considering its deliverables for public consumption. Yet again, the public runs the risk of

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instilling trust under false pretensions, which becomes evident with unexpected and untoward complications in the modern medical era. This brief and recent historical background provides a descriptive take on lack of trust in medicine. But crucial aspects of trust and how they influence the experience of trusting as a patient remain elusive. Herein, we describe several more components of trust and provide a framework with which to think about trust in medicine and oncology specifically. Historical trends and conceptual movements help us understand the interface of trust with medicine in society. We endeavor to provide a background from which the erosion of trust and reaffirmation of trust in modern oncologic care can be considered. The ramifications of trust erosion are unconscionable for patients with cancer who forego curative and other life promoting or symptom reducing therapies. Comprehensive cancer care requires a concerted effort to meet the needs of patients and families who feel compromised by the medical system to such an extent to deny themselves the advantages of disease altering and life-saving science and technology. Trust in medicine requires greater understanding of its essential components to meet this moral, societal, and professional imperative.

Background Trust must be understood as a concept important to medicine before it can be restored [20]. Also, its decline and essential components need to be understood before contemplating how to build, cultivate, and restore trust. In this section, we will examine evidence of trust erosion followed by an explanation of why trust is an integral component of cancer care and lastly some oft cited reasons for trust loss.

Who Says Trust Is Lost? Most people and clinicians feel the ramifications of lost trust continuously. These days, loss of trust in medicine is assumed and rarely questioned. Many trends in modern medical practice such as patient/hospital satisfaction reports and reviews, growing sub-specializations, less reliance on a primary physician, and the corporatization of medicine suggest a growing reluctance to trust. Mistrust and distrust are experienced by oncology clinicians daily. Oncologists can easily conjure up patients or families who discuss the need for second and third opinions, challenge the clinical approach, reproach, or dictate certain treatments, fire off incredulous glances and hints at wanting or needing something else that was not offered. These anecdotal experiences are consistent with the precipitous decline in trust that was first recorded by the Harris poll in 1966. At that time almost 80% of surveyed individuals responded affirmatively to the following: “As far as people in charge of running (e.g., medicine) are concerned, would you say you have a great deal of

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confidence, only some confidence, or hardly any confidence at all in them?” [11]. By the mid 1970s only one third of surveyed individuals responded affirmatively and the yearly poll has never shown a rebound in trust since that time. Other polls by the American Medical Association and European medical societies have shown similar decrements in trust over time [21]. Perhaps not surprisingly, scientific reports on trust loss have proliferated since trust decline was first documented [22]. In addition, other professions have suffered similarly sustained declines in trust since the 1960s [23]. In fact some reports demonstrate trust erosion in medical systems of care (i.e., institutions) specifically and less trust erosion directed at physicians individually [24]. The distinction between loss of trust in physicians versus the medical profession or medical systems of care is important even though loss of trust in any of these domains is interrelated. Trust loss in medicine emanates from within and outside of medicine. For example, social media may proliferate or correct the distribution of untrustworthy medical content [25]. The proliferation of false medical information has entered public awareness and also speaks to a general loss of trust in medical knowledge and culture. Even when reliable content is presented on social media, its message is often distorted or presented inaccurately [26].

Why Examine Trust in Relation to Oncology Practice? The science and technological advancements of oncology have outpaced the science of trust, human emotions, and equitable cancer care delivery across variable patient populations [27]. Cancer evokes a multitude of emotion primarily based on its sinister ability to threaten existence and cause successive losses. Most patients recognize this and rely on medical science and trusting an oncologist to cope with cancer. Despite the risk, a minority of patients fear cancer treatments or the medical system more than the disease, follow other belief systems not consistent with medical science, or opt out for other reasons. Many more patients accept treatment reluctantly based on their mistrust. Many of these belief systems and other reasons for not accepting cancer treatments can be addressed by considering the nature of trust in not only the doctor patient relationship but the setting and other factors that influence the provision of cancer care. Communication in oncology is paramount but will never be entirely adequate irrespective of all the ways that communication in cancer care can be improved. That is, the risk inherent in cancer care cannot be entirely mitigated even by the best communication. Uncertainty is ever present in oncology as all patients with cancer come to realize. Despite best efforts and successes in reducing risk, risk will always be present in the provision of cancer care. Therefore, risk reduction does not eliminate the need for trust in the oncologists’ decisions and judgments and there should not be an expectation that risk reduction replace trust. Patients receiving cancer treatments will always assume risk and therefore trust will always be essential.

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When patients were asked why they had accepted chemotherapy treatments as part of a CALBG collaborative group trial in 1984, the participants responded that ‘they feared the disease, had hope for better outcomes, and trusted their oncologists’ [28]. Clearly, trust backed their ability to participate and receive potentially harmful chemotherapy treatments. This historical study was considered when questioning again, in the modern era of cancer therapeutic, why patients accept these treatments even without necessarily understanding how they work or accepting their effects on quality of life [29]. The tension between helping and hurting is evident throughout oncology practice where the potential to harm is a key part of receiving treatment (e.g., side effects). The goals of curing (when possible) and caring create tension that can be misunderstood and misinterpreted. It is common to hear patients reason to not accept cancer therapy based on the experience of family members or loved ones who suffered from well-intentioned treatment or from the undistinguished progression of disease itself. Risk and uncertainty are ever present concepts in cancer care and help to describe the experience of undergoing a life-threatening treatment for a life-threatening disease. Despite their similarities, risk and uncertainty are not the same. Risk always connotes the potential for loss, otherwise one is not ‘at-risk’. Uncertainty describes a future outcome that usually, but not always, carries the potential for loss. Therefore, you cannot have risk without uncertainty, but you can have uncertainty without risk. Whereas every treatment designed to address cancer carries risk in the form of side effects and uncertainty in the form of treatment outcome, the risks from cancer (i.e., potential for loss) may not be readily appreciated especially for patients who are asymptomatic at diagnosis. Patients who understand uncertainty may overlook an abstract-appearing risk or loss from cancer. Or, in the face of enormous stress, they may be prone to a form of ‘magical thinking’ where not accepting treatment avoids accepting the risk of loss from disease. Accepting a treatment for cancer is not as straightforward as conceptualizing the patient’s risk tolerance or risk aversion because the concept of risk is rarely fully appreciated and may not even apply to the specific choice to accept treatment. Also, it does not address the inner workings of the patient’s resilience and coping strategies. Disavowal or denial of risk may emanate from a (mal)adaptive coping style, but it may also result from confusion in the era of modern therapeutics over actual risk, uncertainty, and outcomes. Of course, many of these concepts operate behind the scenes which is why trust is an imperative component of cancer care. Patients who do not trust have one less important coping strategy to deal with the regular onslaught of cancer-related loss. Not only is entering the world of cancer as a patient universally overwhelming, but decisions are also often made with a sense of urgency and with limited available information. Modern day oncology practice challenges the role of trust by highlighting what is known and minimizing what is unknown. Patients are encouraged to participate in treatment decisions, advocacy, and assessing trustworthiness of their providers (e.g., patient satisfaction surveys and reviews) all of which signal an indeterminate merit or status-based trust. The immediacy with which knowledge is obtained in the digital age is not only unprecedented but it creates an adversarial

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paradigm for the way knowledge is obtained and used in cancer care. Answers are generally not definitive and are based on setting, patient characteristics, and other factors. But the need to reduce risk and undersell what is unknown creates a subtle distress for patients who adapt to the outcome expectations of their providers. Of course, this scenario is a perfect set up for the discreditation of professionalism, which has occurred for all professions over the last few decades and is also highlighted as a key component of trust erosion. In other words, respect for what Aristotle called phronesis or the skill to use the combination of conceptualized and technical knowledge has suffered. Phronesis stands in contrast to the other two integral and related components of knowledge per Aristotle; Episteme as the conceptual and Techne as the technical basis of knowledge. Combining conceptual with technical knowledge, Phronesis is knowing when to apply a certain type of treatment for certain type of patient, for example, and is reminiscent of what people mean when the say ‘the art of medicine’. For a surgeon, episteme means understanding what appendicitis is, for example, techne means understanding how to perform an appendectomy, and phronesis is knowing when it is appropriate to perform the surgery. Phronesis can also be thought of as knowing how to apply the treatment, not just when. Patients who opt not for treatment highlight that what is known about cancer delivery is far from complete-an understanding of how to deliver care to patients who are untrusting is part of the important work of phronesis and needs to be better understood. The Aristotelean model of knowledge is applicable to modern oncology because it is not episteme or techne that are needed to instill trust but phronesis as the form of knowledge most applicable to delivering comprehensive, equitable cancer care to patients who lack trust. An incredulous population unwilling to accept oncologic treatments means that oncology care has yet to understand and deal with this necessary knowledge component. Of note, the use of treatment pathways, guidelines, and even mid-level practitioners (i.e., nurse practitioners, physician assistants) also stand in contrast to respect for phronesis. These system level changes clearly provide invaluable instruction and quality but run the risk of elevating episteme and technebased knowledge beyond phronesis, which is an attractive move in the name of efficacy and efficiency as our scientific and technologic knowledge continue to grow. But this deeper understanding of thoughtfully rendered quality care delivery will always require phronesis-level knowledge. By extension, evidence-based medicine, and the need to reduce risk may even appear to downplay the importance of phronesis. This shift in attitude and focus, in terms of what constitutes medical knowledge (i.e., greater respect for episteme and techne with less consideration for phronesis), has a stronghold over medicine because it may lead to increase productivity or even enhance outcomes in the short term. But further consideration of its effects on trust in medicine and oncology are needed to align these advances with the patient’s experience. The high risk of cancer treatments along with perpetual uncertainty and risk, and those patients who opt not for cancer treatment call for oncologic scientific knowledge that goes beyond the episteme (concept) and techne (technical) knowledge to incorporate phronesis (skill or craftsmanship) knowledge, which shows us how to prudently apply the first two classes of Aristotelean forms of knowledge.

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In sum, a cancer diagnosis is always a personal crisis for an individual who exists within familial, societal, and cultural environments. Therefore, a societal or sociological perspective on cancer care delivery is highly relevant to restoring or cultivating individual level patient trust. In addition, competence does not by itself enhance trust. Perceived competence enhances trustworthiness or that which makes patients more likely to bestow trust [30]. But it does not follow that competence or even trustworthiness are in themselves sufficient for restoring and cultivating trust. By and large, the last 50  years have provided, perhaps, the best test to support this assertion. In the United States, the National Cancer Act was passed into law in 1971 and continues to provide resources and infrastructure that are unprecedented and crucial to the national commitment and agenda to treat cancer [31]. Patients and society have experienced incalculable benefits from these advances. At the same time, professional societies and networks work to ensure quality standards, represent patient perspectives, and set important agenda items. In the United States, cancer research funding (i.e., National Cancer Institute) has been the largest branch of the National Institutes for Health for decades showing continued national support to address cancer. The private sector, which supports most cancer research globally, has similarly demonstrated an unprecedented commitment to understanding cancer and making oncologists even more competent in delivering it. Yet, each successive advance does little to increase the trust required for patients to accept care. Patients who are incredulous, skeptical, and ultimately non-accepting of cancer care and its motives and intentions undermine these infinitely well-resourced initiatives to address it. In other words, trust erosion trust reflects our lack of understanding how to deliver the latest scientific and technological advances equitably irrespective of patient characteristics or a distrustful countenance. An overvaluation of scientific competence without full consideration for patient context and experience undermines trust.

Why Has Trust Disappeared? Practically every development in medicine in the post-World War II period distanced the physician and the hospital from the patient and the community, disrupting personal connections and severing bonds of trust. …. Furthermore, pausing by the bedside has come closer to being, diagnostically speaking, an indulgence, for the patient is frequently far less interesting and less revealing about his symptoms than the technology [32].

David Rothman, a medical sociologist who wrote Strangers at the Bedside: A History of how Law and Bioethics Transformed Medical Decision Making, firstly scrutinizes the basic components of the physical, temporal, hierarchical, and practical changes occurring alongside technological growth in addition to its effects on managing time with patients out of a diagnostic versus moral obligation. It is easy to lose sight of these changes of yesteryear and their ongoing effects which may be entirely unintended. It’s hard to overestimate the weight of these large overwrought systemic changes where for example, by the 1950s, most physicians were

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specialists, something that would have been unfathomable only 20 years prior, and how the ripple effect is experienced decades and generations later. Rothman brings up several important points he speculates contribute to trust lost in medicine, (1) physicians and hospitals were previously strongly tied to the communities where they lived, (2) the self-imposed isolation rendered by medical training and years of subspecialty training means that committee members see clinicians as apart (notice few physicians run for public office especially given their wealth, prestige, and potential to contribute), (3) hospitals are increasingly secularized and corporatized having lost their particular commitments to specific communities (i.e., hospital closures typically effect smaller community oriented facilities), and (4) the successful meritocracy that medical education and placement has become has also created an expectation or normalization of anonymity so that physician and patient are less likely to have a shared background and experiences. Perhaps, Rothman says it best, “modern society has constructed exceptionally sturdy boundaries around illness, confining it to the hospital and making it the nearly exclusive preserve of the medical profession” [32]. The design of modern medicine is functional with regard to bringing technology and outcomes to patients who need them and is not entirely malevolent, of course. Yet, these unintended consequences are reminiscent of the inadvertent effects of mid-century urban design plans on social determinants of health [33]. The designs met the need for progress in that era but had adverse social and humanistic effects that were only fully realized generations later. In both cases, prioritization of technology and efficiency, for example, were not adequately balanced with the social and humanistic needs of the community. Either way, foundational paradigms may be difficult to change but a crisis in trust in medicine is one such reason to question it. A Question of Professionalism? Long before the internet and instantaneous access to information, the public was already questioning the credibility of professionalism across the professions. Discrediting professionalism was coupled with an emphasis on safety, accountability, outcomes, and loss of professional autonomy circa 1960s. Professionalism means that society bestows the privilege to self-regulate and delineate priorities for those professionals who enter the profession [34]. Essentially, this privilege is called into question. Initiatives that impose control in the name of safety or efficiency chip away at the foundation of what is meant by professionalism. Changes that decrease risk and enhance safety are patient centered, beneficial, and practice changing. Yet, those who design systems of care should consider the inadvertent effects of system design on professionalism. Professionalism functions as a surrogate for trust in medicine, its institutions, and its practitioners, generating merit and status- based trust in medicine. Therefore, this direct route to trust in medicine is not available to those who discredit professionalism. Of course, one may argue that there are distinct and credible reasons for undermining professionalism. Of note, these reasons do not affront the existence of professionalism but rather the form in which it has existed in the recent past.

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An Increasing Concern for Trustworthiness and Difficulties Evaluating It Trustworthiness allows for the cultivation of trust. But we can think of examples of people trusting something that is not trustworthy and the opposite, not trusting when something has proven itself trustworthy. There is not a standard measurement of trustworthiness, yet there are various entities meant to capture trustworthiness in medicine (e.g., websites to share feedback on medical care, rate doctors, and hospitals, and direct to consumer marketing), commodify it, and compare its quality. This communicates that if we need to prove our trustworthiness, then trust is a foregone conclusion even before entering the doctor or institution-patient relationship. Perceived untrustworthiness and the erosion of professionalism create a greater experience of vulnerability for the patient who is seeking a trusting relationship by evaluating trustworthiness. Dismissing the Basic Tenets of Scientific Medicine Herein lies a fundamental issue for patients who may be conflicted about what oncology has to offer. Ironically, skepticism and not accepting one’s hypothesis (i.e., rejecting the null hypothesis) are basic tenets of the scientific method. The non-acceptance of one’s ideas or what the scientist wants verified, peer-review, multiple levels of the disproving one’s hypothesis until the null hypothesis can be rejected is science. It dismisses exactly what it wants to prove until dismissal does not make logical or statistical sense. Although science is not entirely objective, the scientific method comes as close as possible to respecting objectivity and the truth of the natural world. Denying the tenets of basic science is not usually a logical or cognitive decision but an emotional one. Abuses of what constitutes medical science have led the public to jettison the entire scientific process rather than disposing of specific instances of bad science. This hypothesis for trust erosion assumes that a clarified or better version of science itself might remedy the disbelief. The problem with this rationale is that those who don’t trust are more likely to already deny the basic premise of oncologic science and the scientific method. Since denial of the basic tenets of medical science rests on emotion rather than logic, it is unlikely that espousing for more or better science by itself will restore trust. Physician as Employee and the Commodification of Medicine Medicine is relational and not simply transactional. There is an assumption and dependence on expected behaviors that can only be achieved in the setting of trust. Of course, healthcare dollars, payment structures, and competition for the delivery of services have already demonstrated the commodification of medicine as something that can be bought, sold, modified, and transferred like many other products of modern civilization. These characteristics are diametrically opposed to the structures of human relationships as unique experiences that are integral to the experience of one’s unique humanity, among others. That is, patients want their care and illness experience to be as unique as they feel themselves to be. They are unlikely to

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find comfort in care that can be exchanged, modified, or transferred at any given moment. Herein lies the conundrum of corporatized medical care delivery. Societal Expectations in Risk Perception and Risk Acceptance The comforts of modernity along with its promise of risk reduction have influenced expectations and the willingness to compromise. To the average onlooker, exchanging trust for risk reduction may seem like a worthy exchange. If medical science and priorities in care focus on reducing risk, then bestowing trust may seem like accepting risk. The illusion of exercising free choice in the face of limited information means that autonomous action seems to operate independently of trust [35]. The expression of personal choice vis a vis autonomous action need not undermine trust. But, especially for those who are not ill, the idea of not needing to trust is appealing as an expression of one’s individualism in the face of existential vulnerability. Patients who experience the vulnerability of illness may not share the same concerns. Honoring patient wishes and the bedrock of dignity in medicine are key elements to the problem of vulnerability. By extension, these are an expression of personal choice, but in the moment of vulnerability from illness, trust, and the relationships from where support is drawn may take on an even greater immediate importance. The prospect of risk reduction is appealing in its promise to not need trust. But risk is never eliminated so there will always be a role for trust. Of course, there are myriad reasons for the decline in trust in medicine and oncology. It does not seem at all possible to identify a singular cause. Its disappearance stems from various contributing factors. Despite incompleteness and speculation, studies should evaluate these contributing factors prospectively to understand the root causes and most influential foundational parts of trust in medicine.

Discussion Modern medicine, in its technological and scientific glory, seems to run counter to establishing trust in medicine. Yet, patients and clinicians will continue to state how important trust is to the practice of oncology and bemoan its disappearance. If we all agree that is important, why does it seem so difficult to find it and restore it?

What Do We Even Mean by Trust in Medicine and Oncology? Like art, you know it when you see it, or so the saying goes. As we’ve established, trust does not come directly from amassing more and more information but emanates from a special form of knowledge (i.e., phronesis), which follows from the dialectic of oncology care and its acceptance into society.

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One key approach to understanding trust in medicine is to consider what it is not. The trust we are referring to goes beyond the everyday parlance of reliability, confidence, belief, or hope. These terms are often used interchangeably with trust and may even masquerade as trust. But they are incomplete and do not in themselves define what we mean by trust in medicine. The trust we are referring to cannot be substituted with other verbs (e.g., to rely on, to believe in, to hope for, to be confident that…). These concepts carry essential elements of trust but oversimplify the concept. Trust in medicine connotes a specific alignment of interests (in a goal of or outcome) that is free from competing interests in that alignment. Trust in medicine is an active choice on the part of the patient. If we substitute one of these words when we talk about the erosion of ‘trust’ (e.g., hope, reliability, confidence, or belief) its meaning falls short and appears much less robust than what we mean by trust in medicine. Wolfensberger and Wrigley have established that trust in medicine is not simply… [22] • Confidence. To be confident or have confidence implies a passive conclusion or fate based on evidence (past results) and the expectation for something specific in the future. To have confidence is passive whereas to trust implies an active choice made as a free agent. • Reliance. Reliance is based on past results and a prediction for future outcomes. In this way, it is like confidence and is also cognitively passive. Trust presupposes uncertainty whereas reliance presupposes a great deal of certainty. Misplaced reliance results in disappointment but a lapse in trust results in the feeling of betrayal. • Hope. The primary distinction between hope and trust is that hope is passive and non-committal whereas trust is commitment and action oriented. Trust and hope are directed to the future. Hope implies fate while trust implies agency. • Belief in. The distinction between ‘I no longer trust versus believe in medicine’ hinges on acknowledgement. To substitute trust for ‘belief in’ is to acknowledge the presence of a particular thing. Trust in medicine cannot be reduced to any of these singular concepts even though it draws from each of them. There is a familial recognition of what is meant by trust in medicine that is more comprehensive than its component parts. Trust in medicine is active, not passive. It is agency-oriented with specific behavioral and moral expectations that follow from an attitude that is not simply logical or cognitive in nature. That is, one can choice to trust even when the data conclude that trust is not appropriate. In this way, trust goes beyond logic and cognition, and is an active attitude. Trust has two antonyms that are used interchangeably. Mistrust refers to an ambivalence to trust or questioning of the extent to which trust may be applied. Distrust, on the other hand, refers to an expectation to not act in the patients’ best interest [36]. Mistrust refers to a reluctance to trust whereas distrust connotes a situation of expectation to act against the patients’ interest. The perception of physician self-interest leads to both conditions depending on its severity. Mistrust and distrust may be appropriate given a particular situation. Like trust, they are agent dependent and action oriented.

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To a large degree, distrust and mistrust are behind various issues around the doctor-patient relationship, medication adherence, clinical trial enrolment, litigation, to name a few areas. When seen from this lens, an ever-increasing concern with protocol, procedures, safety, and risk reduction may all portray plummeting levels of trust in medicine. In fact, mistrust has become something of an expectation in standard oncology practice depending on the spirit with which searching online reviews and ranking is done. On the one hand, such types of activities represent patients and families advocating for themselves and engaging with a system to find the best or most appropriate cancer clinician or treatment. On the other hand, mistrust and even distrust are alarmingly frequent underlying reasons for patients’ attitudes and decisions regarding how they interface with medical care. Defining trust in oncology, specifically, draws from various dimensions that help explain what it takes for a patient to trust her oncologist. But a working model that could be advanced conceptually and inform practice has yet to emerge. Trust is a distinct dimension of the doctor-patient relationship and is essential for oncologic practice [37]. Hillen et al. found that cancer patients’ trust in their physician was correlated with perceived (1) honesty, (2) patient-centered communication, (3) clinical organization (i.e., knowing the patient’s case), in addition to, (4) the technical competence of the physician [38]. Similarly, trust in oncologic nursing is associated with trust facilitating behaviors, nurse attributes (virtues), and influencing patients’ health and psychosocial well-being [39]. A comprehensive definition of trust in oncology may also be setting dependent since inpatients may feel even more vulnerable and are more sensitive to the importance of trust [40]. What works to inspire trust on the outpatient side may not be enough or similar to the trust that inpatient want to have. Another important concept is unidimensional versus multidimensional trust where one can both trust and mistrust at the same time (e.g., trust her competence but not that she has the patient’s best interest at heart) [40]. In oncology, the concepts of ‘swift’ and ‘traditional’ trust may be of importance especially in dealing with a life threatening disease. While traditional trust develops over time and experience, swift trust is situational and lacks precedence. These concepts are hugely important for honoring diversity and facilitating clinical trial participation while resisting the urge to commodify trust for selected purposes [41]. Distrust and overtly not accepting oncologic care clearly leads to adverse outcomes but wavering trust or mistrust can be subtle and similarly lead to poor outcomes. Mistrusting patients may be seen as engaged with a shared decision-making process and advocating their own form of personalized medicine where treatment decisions emanate from the patient’s own determination of appropriate care rather than their acceptance of it. This form of information-based care (as opposed to humanistic, shared decision making, or even paternalistic care) has become an unfortunate accepted standard that is often confused with patient-centered care. The temptation to make physicians into repositories of information void of personal or shared investment in care may be just as detrimental to establishing trust as a purely paternalistic approach. Exploring and engaging with the reasons for mistrust may uncover actionable reasons that could be addressed. This undercurrent of mistrust/distrust

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may emanate from larger systemic causes -an overall question of medicine and its intentions with patients in general despite exceptional medical science (e.g., data). Patients are often asked to accept treatment upon meeting an oncologist who is still a stranger with unknown or undeclared intentions. Patients who are routinely scrutinizing a physician’s record for both accolades and evidence of misguided or inadequate care are searching for something more profound than confidence, believability, reliability, or even the desire to bestow hope. Patients may simply opt for alternate forms of non-standardized cancer therapies to address their malignancy, or they may become incredulous of one’s presentation of the data. They may find that the oncologist discredits someone or something that the patient had put much faith in. A lack of trust certainly undermines a relationship making it difficult to fully ascertain reasons for not trusting. Sometimes patients question our motives to provide care claiming that it is only to make money or collect insurance claims. These examples highlight a lack of trust that also resonates with betrayal, one’s belief system and values, and the underlying sense that this person or entity does not have my best interest in mind. At the same time, the presence of trust creates a feeling of alignment, wanting to help a fellow person, and good working energy. Mistrust and distrust are not the same, but they bring up the related concept of trustworthiness. Both mistrust and distrust are prevalent feelings among patients who could benefit from cancer treatment but are expressed in different ways. A patient who is mistrusting might inquire about the number of patients treated, look through patient satisfaction scores and may be willing to test the waters so-to-speak. The distrusting patient has already made up her mind that standard oncology care will assuredly result in inferior outcomes for her. One can imagine ways in which each concept could be addressed. At the same time, trust erosion in medicine may have more to do with the appropriate rise of distrust and mistrust than the erosion of trust itself. In other words, conditions and other factors may signal reasons for distrust, which may appear more appropriate than trust in many circumstances. Even still, an adequate understanding of trust in medicine remains elusive [42]. Various aspects of trust in medicine are well described but are only partial definitions or actually other concepts masquerading as trust. A working definition should discriminate these related concepts (e.g., hope, belief in, reliance, confidence) from the meaning of trust in medicine and have explanatory power, which can explain the value of trust in medicine. Also, a definition of trust in medicine should differentiate itself from trustworthiness or that which provides a justification for trust. Otherwise, the argument for what constitutes trust in medicine becomes fallacious and circular.

A Framework to Understand Trust in Medicine and Oncology Wolfensberger and Wrigley argue that a ‘pattern-based’ definition of trust in medicine functions like making a diagnosis [22]. Essential features must be present while others are ancillary and their presence non-essential to the definition. This flexibility allows for comprehensiveness. At the same time, a bare minimum requirement establishes what constitutes trust in medicine. This ‘pattern-based’ definition provides a dynamic component in its definition that may be studied and applied

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empirically. Wolfensberger and Wrigley state that their ‘pattern-based’ definition of trust in medicine is composed of the following: 1. An expectation. This makes trust future oriented based on the competency and commitment of the physician. Trust comes with an expectation and is therefore not general or wholesale. There cannot be trust without an expectation of action and behavior. 2. Uncertainty of outcome and risk for the trustee. Knowledge must be incomplete, and hazard a moral risk, otherwise trust becomes redundant. That is, trust becomes redundant when we eliminate risk. Risk implies outcome uncertainty. Both are necessary components of trust in the medical setting. 3. A free choice. Trust must be intentional and cannot be accidental. Of note, a freely chosen trust does not have to follow automatically from ‘trustworthiness’. There must be an active willingness to accept the inherent risk (i.e., one may be forced to rely on or cooperative with someone or something, but one cannot be forced to trust-it’s always an intentional choice). 4. A breach of trust causes a feeling of betrayal. The reactive attitude of a non-­ moral expectation is disappointment. The feeling of betrayal that accompanies a breach of trust indicates the moral aspect of trust. 5. A relationship between two moral agents. In this respect, trust is relational and exhibits a fiduciary responsibility. The trustor and trustee must be autonomous to demonstrate free choice and the commitment required for trust. This relationship may be with an individual (doctor), an institution (hospital), or fiduciary service such as an insurance company. 6. Evidence of justification. This can vary from only evidence based or a strict reductionistic perspective to testimonial (non-evidence based). This latter aspect of trust is the basis for most arguments regarding the legitimacy of trust [22]. These important aspects elevate trust in medicine and oncology beyond a transactional commodity. Relationships are not transferrable in the way other commodities are. Trust means the parties involved are prepared to enter into a kind of cooperation [43]. Their framework helps us operationalize trust erosion and potentially address ways that it may be restored. Most arguments for or against trust in medicine are concerned with the last criterion only, evidence for justification. Patients and clinicians often disagree about what constitutes an adequate justification of trust, or dis/mistrust, in medicine. Evidence varies from empirically derived to anecdotal or testimonial. But justification is only a part of trust in medicine. The framework suggests that many other components make up trust in medicine or oncology before even considering its justification.

Loss of Trust in Medicine: A Relational Perspective It does not make sense to discuss trust outside of the context of a relationship. The framework above explains that moral agents entering a relationship must be autonomous in addition to having the ability to choose freely. But autonomous decision making is much more than the appearance of choosing freely. Beauchamp and Childress explain that autonomy is the following:

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D. C. McFarland et al. Self-rule free from both controlling interference by others and from limitations, such as inadequate understanding, which prevent meaningful choice. The autonomous individual acts freely in accordance with a self-chosen plan, analogous to the way an independent government manages its territories and sets its policies. A person of diminished autonomy, by contrast, is in some respect controlled by others or incapable of deliberating or acting on the basis of his or her desires and plans. [44]

In addition, Beauchamp and Childress go into further detail regarding the ability to pass over primary duties or priorities for secondary ones when necessary. If a person or governing body is not able to toggle back and forth between priorities, then they are not autonomous even if their choices appear freely chosen. Patient care and professionalism require the minimization of self-interest (e.g., financial, personal) and the ability to choose between primary and secondary priorities as described by Beauchamp and Childress. One may argue that patient care is always the primary priority. But the same principle applies. We cannot demonstrate autonomy unless we are choosing between valued entities. The greater the complexity in medicine, the more likely it is that clinicians will not be able to override priorities when needed and that patient care may be compromised as a result. There are almost infinite examples of interests making their way into medicine just as ‘special’ interest groups influence the priorities of government. The result is risking that patients’ priorities are subsumed under institutional, physician, or insurance company-related priorities. Complexity signals that priorities may be misaligned. Patients, families, and clinicians perceive these gaps and divided interests that function to undermine their trust in medicine. Trust requires agency to choose freely and is an expression of relationship health just as it would be between any two people. Navigating priorities is challenging because there are going to be times when a lesser priority (e.g., fulfilling RVU requirements, competing for patient market share) takes place over the primary priority (e.g., providing quality patient care) and a non-autonomous physician or system will be unable to re-instill the primary priority. The argument here is not that there is no place for other interests in medicine but that they affect trust as a relational entity. By extension, if medicine is not autonomous, then it lacks the ability to predictably choose the best course of action for patients and mistrust or even distrust is the appropriate response. In shared decision making, clinicians must demonstrate respect for patient autonomy and the person they are treating. But patients also want to respect their clinicians’ choices but may not be able to if clinicians are perceived as non-­ autonomous. In this regard, loss of trust in medicine may be a matter of practicing what you preach. Just as a patient who expresses a choice does not necessarily have decisional capacity, a doctor who provides a recommendation is not necessarily acting autonomously.

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Other Considerations in Restoring Trust The Problem with Commodification of Trust There is a temptation to commodify all aspects of care including trust to enhance outcomes and deliver evidence base care. Efforts have been made to describe ‘trust prescriptions’ or contracts, for example, but these efforts may legitimize a loss of trust in the first place and have the unintended consequence of letting patients know that trusting their physicians requires a contract [41]. Contracts call into question the agency with which patients enter into a trust with their oncologists and may inadvertently dampen the emotional aspect of trust that is crucial to its existence in the first place. The emotional and attitudinal aspects of bestowing trust are not only challenging for clinicians, in addition to patients, but may be easily, and inadvertently exchanged in the name of efficiency, productivity, and even safety. We should be aware of this understandable tendency and its untoward consequences, especially regarding the loss of trust. There is no strong-arming trust to happen if it is not there in the first place. Both parties must enter into the agreement freely, which makes contracts or agreements for trustworthy behavior not only redundant but questionable.

 he Problem with Guidelines and Regulations Meant to Enhance T and Restore Trust Regulations and objective standards, which are meant to enhance outcomes, may compromise the trust in the relationship between clinician and patient as response-­ ability is transferred from the clinician to the guideline or regulation. Given the importance of a patient-centered orientation in medicine, guidelines and regulations make sense to deliver optimized outcomes. But their presence does not fit well into the moral weightiness of the clinician-patient relationship. Guidelines and regulations have no active agency in themselves and should not be expected to enhance trust, even if they enhance outcomes. This seems counterintuitive since outcomes vis a vis regulations and guidelines continue to be improved. But the framework provided by Wolfensberger and Wrigley does not include outcomes even though competence (leading to better outcomes) is part of what goes into one justification for trust [22]. Transferring trust from the clinician to the guideline or regulation changes the relationship and takes trust away from the moral agency of the clinician. The other problem with guidelines and regulations is that they provide a way out of the moral weightiness of the clinician-patient relationship. This may be attractive either intentionally or unconsciously to clinicians who are required to amass more and more clinical information to stay up to date with science and productivity. A

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lessened necessity of trust may be attractive for patients as well. This is one of the subtle ways that the clinician-patient relationship takes the backseat to the process of delivering science-based care. As patients live longer and their medical issues become more complicated, their care will continue to be emotionally demanding and this tendency is likely to continue.

Reconsidering Trust Loss in Medicine and Oncology Status, merit, professionalism, clinical competence, and resourcefulness in themselves are not good enough to restore trust if the relational emphasis is not present. Well before one argues about what constitutes a justification to trust, the medical setting has already created an environment that either fosters trust or its opposite. This definitional framework provided by Wrigley operationalizes trust as an active entity that binds a relationship in trust. Trust and the relational partnerships that it requires not only help patients cope with risk and uncertainty but also induce trustworthiness in the trusted clinicians. Obtaining a higher level of relational medical care is obtainable goal even within the bounds of medical system restraints [45]. But the success of a trusting doctor-patient relationship rests on many of the factors operationalized by Wrigley in their ‘pattern-based’ definition of trust in medicine. 1. Are the expectations on which the trust relationship is founded fair, reasonable, and within the bounds of a trusted relationship? Can the trustee meet the expectations of the trustor? Or are they not actually attainable? Are behaviors consistent with the expectation of committed interest? 2. How are the realities of risk and uncertainty managed? A trusting attitude tolerates or accepts risk while still aiming for the best possible outcome in the patient’s interest. Is risk acceptance consistent with medical and biological realities? 3. Do the clinicians and institutions act autonomously on the patient’s behalf or are there signals that patients may not always be prioritized? To what extent is the commitment to trust active on the part of the clinicians providing the care? 4. Are breaches in trust dealt with as the betrayal that they are (given the moral implications of trust) or do the clinicians treat poor outcomes and unexpected behaviors as a transactional loss? 5. Similarly, do the behaviors and attitudes around the doctor patient relationship treated as a relationship? 6. Patients will have their own justifications for trust. How do doctors and healthcare organizations justify their own trustworthiness? These questions inspired by the Wrigley ‘pattern based’ trust in medicine provide a starting point for considering trust and the underlying commitment of autonomous clinicians towards their patients.

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Relevance to Oncology Trust loss is not necessarily greater in oncology. In fact, reports suggest that trust in oncology may be higher than other medical fields and that patients trust their physicians more than healthcare in general [46]. Continuously, oncologists manage the risk and uncertainty that cancer brings even while providing hope and confidence in treatments and outcomes. Dealing with risk in a humanistic way cultivates trust as long as it is done within the context of a relationship [47]. The opportunity to trust in oncology is great given the ever present specter of risk and uncertainty and that navigating uncertainty inspires trust [48]. This is central activity of oncology practice cannot be overstated since expertise alone will not inspire trust-there must be a humanistic, relational, and communicative component. Oncology teams and clinicians help patients and their families navigate cancer care complexities along with the uncertainty that it brings [49]. This essential relational component to oncology can become lost in the context of cancer-related and professional priorities. This is understandable given the various practice pressures, third-party payers, and the fast-paced science behind oncology care in addition the multidimensional commitments to service, education, and research in oncology. These independent foci are easily identifiable escapes from relational focus essential to establishing and maintaining trust in medicine. An overzealous emphasis on treatment over the relational practice of oncology is an easily understood fallacy given the potential for positive outcomes with the last couple of decades of paradigm changing and novel treatments. But this error of over-reliance on technology is nothing new. Perhaps most critically, Günther Anders provides an analysis of overreliance on technology as the Promethean Gap [50]. Hillen and colleagues describe that cancer patients may be initially inclined to trust their oncologist based on their expertise or competence, especially with heightened clinical severity, but that this trust does not last without the ‘caring’ components and demonstration of patient priority [30]. They have validated a scale, Trust in Oncologist Scale (TiOS) which has four following components: competence, fidelity, honesty and caring [51].

Restoring Trust Trust does not happen in isolation. It happens in the context of a relationship. Restoring trust is relationship building that expands even further beyond the doctor-­ patient relationship. For this reason, trust must consider its predetermined elements upon entering the relationship. The hassles and issues that patients confront in the name of coordinating or navigating ‘complex’ care signal the presence of non-­ patient related priorities, which patients and families generally interpret as such. Patients bring their own past experiences and societal perspective to bare on their relationship with their clinicians. The road to establishing trust is much longer and more involved for patients who assume the complex system is not for them.

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This chapter casts a large net aimed at including the full range of what is meant by trust in medicine, which extends beyond the clinician. Once in the exam room, patient centered and related activities will foster trust. Of course, keeping the focus to the patient and her needs is best, but at the same time, the clinician must be resourceful and help navigate the complexities as well as the uncertainties of disease. The trust relationship must consider the healthcare system in which the patient finds herself since health is tied to the patient environment and lifestyle in a reciprocal relationship [52]. In other words, trust cannot be restored in medicine if it is not addressed in other areas of patient care beyond the doctor-patient relationship [53]. In the immediate context of the doctor-patient relationship, it is clear that trust emanates from the humanistic and relational aspects to this commitment. Modern oncologic science and technology can inadvertently undermine the apparent importance of the integral relationship between clinician, institution, and patient. In the presence of fast-paced technology and drug development where access and applicability are key, humanistic care may be replaced with something more transactional in nature. A medical system that emphasizes RVU’s and optimizing the business of medicine alongside patient care also contributes to medicine as a transactional entity. Of course, transactions and expected behaviors are part of any relationship, but the presence of trust depends on where the emphasis lies. The temptation to create a technocratic, transactional, information dispensing form of medicine is attractive to patients who want to ensure their access to high quality care and clinicians who want the same thing in addition to offloading the emotional component to the relationship (i.e., Promethean Gap). Humanistic, relationship-­driven medicine is not only good care but holds the key for restoring in trust to the practice of medicine and oncology. Trust emanates from attention to the realities of the patient’s situation in the context of their disease processes.

Conclusion The patient who opts out of cancer treatment may not be exercising autonomy and patient preference but may be acting out of mistrust or distrust of the system designed to take care of them. A philosophical, and ethical, question remains highly salient: to what extent should the medical system concern itself with non-patients who decide to not avail themselves of what can be offered. The answer is complicated by an overarching, and important, emphasis on patient autonomy to the exclusion of other ethical principles and approaches to modern oncologic care. A definition that demonstrates discriminatory and explanatory dimension is key. The “pattern-based” definition of trust in medicine points out the myriad ways in which trust is established even outside of the doctor-patient relationship and is highly applicable to the systems of medical care, which patients tend to trust even less than clinicians. While various reasons for trust erosion have been explored, modern medicine continues to assault the quality and tenor of clinician-patient relationships. Healthcare communities that want to prioritize humanistic quality patient care need to consider the consequences of trust erosion.

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Chapter 2

Fiduciary or Not? Healthcare Systems and Oncology Randall F. Holcombe

Components of the Healthcare System Patients are the most important, and most subordinate, component of a healthcare system. They rely on providers and their staff, hospitals and pharmacies as direct providers of care. In many ways, each of these components is directed in part by insurance providers, with which patients, unfortunately, must often interface with. Less direct components are governmental regulators and a hidden infrastructure of suppliers and group purchasing organizations that oversee or support activities within the healthcare system [1]. A group purchasing organization (GPO) is an entity that helps healthcare institutions—such as hospitals, nursing homes and home health agencies—realize savings and efficiencies by aggregating purchasing volume and using that leverage to negotiate discounts with manufacturers, distributors, and other vendors. As such they influence both the supplies needed for patient care and the overall cost of care. Taken together, these entities form a healthcare system that works collaboratively to administer health care for cancer and other patients (Fig. 2.1). Several instruments have been developed to measure the degree of patient trust in physicians. The Trust in Physician Scale by Anderson and Dedrick [2] assesses patient trust in the domains of dependability, confidence, and confidentiality of information. It has good psychometric properties but was developed primarily for use in primary care practice, not oncology. The Primary Care Assessment Survey (PCAS) by Saffran et al. [3] has a trust subscale and focuses on a specific patient-­ doctor relationship and measures trust over the entire term of the relationship. Kao and colleagues [4] developed a 10-item Patient Trust Scale that is focused to a great

R. F. Holcombe (*) Division of Hematology and Medical Oncology, University of Vermont Cancer Center, J. Walter Juckett Chair in Cancer Research, Burlington, VT, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 D. C. McFarland et al. (eds.), The Complex Role of Patient Trust in Oncology, Psychiatry Update 5, https://doi.org/10.1007/978-3-031-48557-2_2

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Regulators

Insurance Providers

Pharmacies

Hospitals

Providers

Patients

Fig. 2.1  Components of the healthcare delivery system

degree on cost and on managed care health service delivery which may not always be applicable for cancer patients. From prior studies with these instruments, and other surveys, it is evident that patients identify providers (physicians primarily but also nurses) as the primary component in which they place their trust [5, 6]. As many as 84% of patients report that they have trust in these providers with whom they have direct contact [6], and that the level of trust correlates with communication, level of interpersonal interaction and knowledge of the patient [3]. Importantly, trust also correlates with patient adherence to treatment, which for the cancer patients correlates with overall outcomes [7], and with patient satisfaction [8]. Patients have far less trust that hospitals are serving as fiduciaries, 72% in a survey by NORC, an independent research organization at the University of Chicago [4]. In a Joint Commission survey, Greene et  al. [9] found that trust in hospitals depends on three main factors: (1) the perception of competence, (2) caring (hospital culture) and (3) communication (listening to patients and explaining treatment and discharge plans clearly). Some respondents in this Joint Commission survey cited cost in their reported overall level of trust in hospitals, while others separated the trust they had in medical care and the trust they had in billing practices.

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As few as 33% of patients trust that health care insurers are acting in their best interests [6]. In 2017, the ReviveHealth National Trust Index Survey [10] studied the opinions and attitudes of healthcare professionals including physicians, executives and hospital and health system leaders and found that this group, despite having more detailed information about the operational aspects of healthcare delivery, also had limited trust in insurers. Doctors, under a traditional fee-for-service model, are rewarded for providing more care, while insurers have incentives to restrict coverage. Patients, the ultimate consumers, lack a direct relationship with insurers and often have confrontational interactions with them. A survey conducted in 2015 by Welltok, a health-­optimization company, reported that only eight per cent of respondents relied on insurers as a source of health and wellness [11]. In general, patients in the United States are not comfortable with rationing health care, and this may contribute to the mistrust of insurers who often deny coverage for services.

The Case of Denied Services Most cancer patients have run into the problem of health insurer denial of services that have been recommended by the physician. This is so common that the American Cancer Society has this statement on its website [12]: It’s not unusual for insurers to deny some claims or say they won’t cover a test, procedure, or service that doctors order.

Since patients trust their providers significantly more than the insurance companies, a logical conclusion for a patient to come to is that the insurance companies are not acting in their best interest, or in other words, as a fiduciary. A similar situation occurs when a patient is hospitalized or seen in a hospital-based clinic or emergency department, and they receive a “surprise” bill for services. According to NORC, as many as 57% of adults experience surprise bills for healthcare [13]. While most occurrences are due to lack of insurance coverage for a specific service or care from out-of-network providers, these bills are often generated by hospitals for services performed that were not pre-authorized. This further erodes trust in both insurance providers and hospitals, and the healthcare system overall.

Trust in Healthcare System Components Implicit in the concept of trust is that the trusted partner will work to the benefit of the individual patient; in essence serving as a fiduciary on the patients’ behalf. The high level of trust afforded to physician and nurse providers suggests that patients have confidence that the best recommendations and treatments for them will be provided. The lower level of trust in healthcare systems, and particular health

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insurance providers, suggests that patients do not have this same confidence in other components of the healthcare system. However, providers are often dependent on other components of the system to fulfil their responsibilities, in a fiduciary capacity to their patient. Much of the care that can be delivered is facilitated, or prevented, by hospitals, pharmacies, and insurance providers [14]. A Harris Poll reported that only 9% of U.S. consumers believe pharma and biotechnology, the source of the vast majority of new drugs for cancer, put patients over profits; only 16% believe health insurers do. While patients have some interactions with entities other than their own physician and nurse, their understanding of the interdependency of the different components may be minimal, and lack of trust in one area will affect trust in each and in the overall system.

The Knowledge Gap Disparity When you stay in a hotel, you intrinsically know what a clean room is and whether you receive good service. Hotels strive to meet your expectations. If they don’t, you won’t return. When you go to a bakery to buy a freshly baked loaf of bread, you may not know the intricacies about how the dough is kneaded and the bread baked, but you intrinsically know what is truly important—the outcome reflected in how the bread tastes. If you like it, you may buy more; if not, you’ll go to another bakery next time. These examples demonstrate situations where there is not a large knowledge gap between consumer and provider. In healthcare however, perhaps more than any other service industry, there is a profound knowledge gap between patients and their physicians, and patients and the health system overall [15]. This puts patients at a disadvantage and further increases the necessity for trust. Even though patients, particularly those with cancer, are increasingly utilizing the internet to gain information about their disease [16], patients often get incorrect information, and the knowledge gap remains, creating a huge disparity between provider and consumer. This puts the consumer, the cancer patient, in a subordinate role relying almost exclusively on the knowledge and recommendations by the provider. In such a situation, a patient’s trust in their physician is essential; just as importantly, it is essential that the physician assumes a fiduciary role in the care of their patient.

Medical Education and Trainees Patients trust most in their providers and secondarily in their hospital, but little is known how the presence of trainees may influence this trust. Trainees are both an extension of the provider as well as an employee of the hospital/health system. Patients treated at academic medical centers, where trainees are primarily located, may have up to a 20% improvement of survival according to Burke and colleagues in a study from the TH Chan School of Public Health at Harvard Medical School [17]. These centers support innovation and education, and often provide new modalities of treatment unavailable at community centers. The culture of multi-­disciplinary

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care may also contribute to improved survival. Despite this apparent advantage to receiving care at a teaching hospital, patients also tend to have mistrust when they perceive that their doctors do not know them or if their care is perceived as impersonal [6]. Such is often the case with rotating “housestaff” trainees that care for patients in the inpatient setting for a limited time. Indeed, in a small study focused on otolaryngology, patients’ trust in trainees was found to be highly conditional, and not absolute [18]. This is not to say that trainees are not acting as fiduciaries in trying to provide the best care for patients. Given the primary focus on education, the concept of acting as a fiduciary is more implicit, than explicit. If patients experience a loss of trust in trainee caretakers, this will impact trust in the attending physician, the hospital, and perhaps healthcare in general.

Fiduciary Care for the Non-trusting The Institute of Medication at the National Academy of Sciences has reported that “racial and ethnic minorities receive lower-quality health care than white people—even when insurance status, income, age, and severity of conditions are comparable” [19]. Is it any wonder then that Black and Hispanic patients have lower levels of trust with their physicians [6]? Overall, lack of trust in health care remains an issue, particularly among individuals who identify as Black, Asian, Hispanic, and Native American [20]. Should patients from racial and ethnic minority groups trust their providers, hospitals, or the healthcare system overall? Their apparent lack of trust implies strongly that these entities are not always acting in a fiduciary capacity, whether explicitly or implicitly. The documentation of poorer outcomes by the Institute of Medicine for these groups supports the individual patient perceptions. This trust is critical because when physicians and patients share a trusted relationship, there is improvement in multiple health measures including patient understanding of cancer risk, adherence to cancer screening and patient perceptions of treatment decisions [21]. Patients have more trust in providers if they look like them [22], a strong incentive to increase diversification of the healthcare workforce. How can health care organizations earn back the trust of these under-represented communities? This will require recognition of implicit biases, community outreach, incorporation of community stakeholders into institutional decision-making processes, as well as diversification of the provider workforce. Improved patient outcomes will demonstrate a commitment to the fiduciary relationship, and only until then, will improved trust follow.

The Value Paradigm Over the past several years, a major precept driving cancer care delivery, and healthcare delivery in general, has revolved around the concept of value. As Michael Porter described in 2010 [23], value should be the “overarching goal of healthcare delivery, with value described as health outcomes achieved per dollar spent”. While

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good outcomes may be the goal of insurance providers, health systems/hospitals and physicians, the incentives related to cost do not align across these groups. Insurers and hospitals are incentivized to keep costs down, while providers, at least those operating in the prevalent fee-for-service model in the United States, are incentivized to provide more care. More care usually equates to higher cost. These competing predilections make it difficult to define when each of these components is functioning as a fiduciary on behalf of individual patients. It is important, therefore, to understand each of the components of the value paradigm, and how they are interrelated (Fig. 2.2). The easiest to understand is cost. As can be seen in the Figure, cost is essentially a linear function; the more money that is invested (cost input), the more services that can be provided (cost output). Because of inefficiencies present within any system, the slope of the cost curve is less than 1, requiring more than 1 unit of cost input to achieve 1 unit of cost output. For most healthcare In the United States, insurers are incentivized to spend less (less cost input), and providers are incentivized to spend more (more cost input). Hospitals are generally in alignment with insurers but function more as a pass through for cost inputs and outputs, surviving on the small margins attained for services rendered. For cancer care delivery, the numerator of the value paradigm, the health outcomes achieved, can be thought of as the quality of care delivered. The quality curve is far from linear. The quality inputs on the x axis of the Figure are the resources invested toward improvement of quality of care, while the quality outputs represent attainment of quality measures and metrics. Initially, a certain amount of input is required to attain any quality outcome. Then the curve rises rapidly and eventually plateaus. At this point, when optimal quality outcomes have been achieved, no additional quality is possible, regardless of how many resources are provided. Value is quality divided by the cost. The optimal value is at the apex of the value curve. Beyond that, there is increasing cost without a concomitant increase in quality. Below the apex, quality falls more quickly than cost and value similarly falls

Fig. 2.2  The value paradigm for cancer care

Outputs

Cost, Quality and Value in Healthcare

Cost

Quality

Inputs

Value

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rapidly. The Ideal value is obtained where, and just before, quality levels out, before adding additional cost into the system. “High value care” has become a marketing buzzword for insurers and health systems to describe their commitment to the value paradigm. From a societal perspective, most patients also indicate that they desire high value care. However, patients define value very differently from health care providers and the health care system [24]. What patients really want, on an individual level, is high quality care. They are not generally concerned about the overall cost of care, just on their own individual out of pocket expenditures. For cancer care, which exceeds out-of-pocket caps for most insurances very quickly, overall cost of care and the amount of individual outof-pocket obligation do not have a direct correlation. Thus, patients are okay if more money is spent by the healthcare system on their behalf, and generally have little incentive to reduce costs that could potentially, and negatively, impact quality. Physicians are incentivized similarly to patients and tend to practice at the far-right end of the value paradigm curves where quality is maximal despite falling value. In essence, patients and providers are in more alignment with respect to the value paradigm than are patients with hospitals and health systems or patients with insurance providers. This makes it easier for providers to act as a fiduciary for an individual patient, and, concurrently, for patients to have high trust in their providers. The hospitals, health systems and insurers, who retain more concern for the overall cost of care, may be fiduciaries for society as a whole (in recognizing the need to control healthcare spending) but may not be acting as optimal fiduciaries for the individual patient. This perception erodes the level of trust that patients have for these components of the healthcare system. Who monitors the value paradigm to ensure that the healthcare delivery system acts as a fiduciary on the cancer patients’ behalf? This remains an open question because those with the least influence, patients and providers, have the most to lose should the system fail in this mission. Ongoing monitoring and reassessment are essential at all levels of the healthcare delivery system.

Summary The healthcare system is complex and different components have vastly different interactions with the patient. Because of the knowledge gap between patients and providers, and patients and other components of the healthcare system, it is essential that the more influential components act as fiduciaries on the patients’ behalf. These components also have markedly different incentives related to the delivery (and cost) of care. Also, whether a patient perceives that this fiduciary relationship is being maintained directly influences their level of trust with the various components. In general, patients trust their providers and have less trust in hospitals and insurance providers. Underrepresented racial and ethnic communities generally have significantly less trust in all aspects of the healthcare system, and this lack of trust may indeed be justified given the inferior health outcomes these groups have.

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Finally, an understanding of the value paradigm, and how this affects care delivery that generates trust, or results in lack of trust, and affects the perception and realization of fiduciary responsibilities, is critically important.

References 1. Blokdyk G.  Group purchasing organization: a complete guide 2020 edition. Published by 5STARCooks; 2021. ISBN-10: 0655933204. 2. Anderson LA, Dedrick RF. Development of the Trust in Physician Scale: a measure to assess interpersonal trust in patient-physician relationships. Psychol Rep. 1990;67:1091–100. 3. Safran DG, Kosinski M, Tarlov AR, et al. The Primary Care Assessment Survey: tests of data quality and measurement performance. Med Care. 1998;36:728–39. 4. Kao AC, Green DC, Zaslavsky AM, Koplan JP, Cleary PD. The relationship between method of physician payment and patient trust. JAMA. 1998;280:1708–14. 5. Pearson SD, Raeke LH. Patients’ trust in physicians: many theories, few measures, and little data. J Gen Intern Med. 2000;15(7):509–13. 6. ABIM Foundation, Caroline Pearson, NORC at the University of Chicago. Surveys of trust in the U.S. Health Care System. https://www.norc.org/PDFs/ABIM%20Foundation/20210520_ NORC_ABIM_Foundation_Trust%20in%20Healthcare_Part%201.pdf. 7. Hansen LA.  Impact of nonadherence to cancer therapy. The Oncology Pharmacist. 27 Mar 2012. https://www.theoncologypharmacist.com/jhop-­web-­exclusives/14873-­top-­14873. Accessed 2 Sept 2022. 8. Safran DG, Taira DA, Rogers WH, Kosinski M, Ware JE, Tarlov AR. Linking primary care performance to outcomes of care. J Fam Pract. 1998;47:213–20. 9. Greene J, Samuel-Jakubos H.  Building patient trust in hospitals: a combination of hospital-­related factors and health care clinician behaviors. Jt Comm J Qual Patient Saf. 2021;47(12):768–74. 10. Trust in health insurers sinks to an all-time low. Modern Healthcare September 25, 2017 01:00 AM.  Shelby Livingston. https://www.modernhealthcare.com/article/20170925/ NEWS/170929926/trust-­in-­health-­insurers-­sinks-­to-­an-­all-­time-­low. Accessed 2 Sept 2022. 11. Xu R. The health-care industry’s relationship problems. The New Yorker. 28 Oct 2015. https:// www.newyorker.com/business/currency/the-­health-­care-­industrys-­relationship-­problems. Accessed 2 Sept 2022. 12. American Cancer Society. https://www.cancer.org/treatment/finding-­and-­paying-­for-­ treatment/managing-­h ealth-­i nsurance/if-­y our-­h ealth-­i nsurance-­c laim-­i s-­d enied.html. Accessed 4 Sept 2022. 13. Waler T.  Survey sheds light on frequency of surprise medical bills in America. Managed Healthcare Executive. 15 Sept 2018. https://www.managedhealthcareexecutive.com/view/ survey-­sheds-­light-­frequency-­surprise-­medical-­bills-­america. Accessed 4 Sept 2022. 14. Lipsitz LA. Understanding health care as a complex system. JAMA. 2012;308:243–4. 15. Tan C, Loh L. Bridging the information gap between physician and patient perspectives on health. CMAJ Blogs. 21 Apr 2017. https://cmajblogs.com/bridging-­patient-­physician-­gap/. Accessed 4 Sept 2022. 16. Finney Rutten LJ, Blake KD, Greenberg-Worisek AJ, Allen SV, Moser RP, Hesse BW. Online health information seeking among US adults: measuring progress toward a healthy people 2020 objective. Public Health Rep. 2019;134:617–25. 17. Burke LG, Frakt AB, Khullar D, Orav EJ, Jha AK. Association between teaching status and mortality in US hospitals. JAMA. 2017;317:2105–13. 18. Kana LA, Firn JI, Shuman AG, Hogikyan ND. Patient perceptions of trust in trainees during delivery of surgical care: a thematic analysis. J Surg Educ. 2021;78:462–8.

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19. Smedley BD, Stith AY, Nelson AR.  The Institute of Medicine Report: unequal treatment: confronting racial and ethnic disparities in health care. Washington, DC: National Academies Press, NBK220358; 2003. 20. Read L, Korender L, Nelson H. Rebuilding trust in health care: what do consumers want—and need—organizations to do? Deloite Insights. https://www2.deloitte.com/us/en/insights/industry/health-­care/trust-­in-­health-­care-­system.html. Accessed 4 Sept 2022. 21. Bajaj SS, Stanford FC.  Beyond Tuskegee—vaccine distrust and everyday racism. N Engl J Med. 2021;384:e12. 22. Tanne JH. Patients are more satisfied with care from doctors of same race. BMJ. 2002;325:1057. 23. Porter ME. What is value in healthcare? N Engl J Med. 2010;363:2477–81. 24. The disconnect between how physicians and patients define high-value care. ScribeAmerica. 22 Feb 2018. https://www.scribeamerica.com/blog-­post/disconnect-­physicians-­patients-­ define-­high-­value-­care/. Accessed 11 Sept 2022.

Chapter 3

Medical Oversight and Public Trust of Medicine: Breaches of Trust Shannon L. Mazur and Jennifer B. Sharma

Introduction Establishing and maintaining trust are essential aspects of all patient care. A trusting patient-physician encounter facilitates meaningful interactions with patients and families, creates opportunities to identify and allay unanticipated fears, and permits a more effective therapeutic relationship. Creating opportunities for trust within the encounter ideally contributes to the patient’s sense of dignity, self-worth, and hope for the future. By developing a trusting therapeutic relationship, physicians may help patients and their families make informed decisions. Trusting relationships can ease tension in ethically fraught situations, such as those involving lack of consent, familial discord, surrogate decision-making, and end-of-life discussions. As an extension of establishing trust, physicians are also responsible for developing an awareness of the power dynamics at play within a typical patient encounter and striving to assess the patient’s understanding of their rights and autonomy. Physicians with an awareness of social determinants of health are better equipped to address inequalities in healthcare, recognizing that they often come from a position of power. A breach of trust can be understood as a violation of a patient’s rights, confidence, and privacy, such as in the case of breaching confidentiality or failing to obtain informed consent. The duty to protect patient privacy was noted as early as

S. L. Mazur (*) Department of Psychiatry, Yale School of Medicine, Yale New Haven Hospital, New Haven, CT, USA e-mail: [email protected] J. B. Sharma Department of Psychiatry, UMass Chan Medical School-Baystate, Baystate Medical Center, Springfield, MA, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 D. C. McFarland et al. (eds.), The Complex Role of Patient Trust in Oncology, Psychiatry Update 5, https://doi.org/10.1007/978-3-031-48557-2_3

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400 BC as an extension of the Hippocratic Oath: “Whatever I see or hear in the lives of my patients, whether in connection with my professional practice or not, which ought not to be spoken of outside, I will keep secret, as considering all such things to be private” [1]. According to the AMA Code of Ethics, a physician “shall respect the rights of patients, colleagues, and other health professionals, and shall safeguard patient confidence and privacy within the constraints of the law” [2]. This duty is essential to the patient-physician relationship and to establishing trust. Breaches of trust are present throughout the history of medicine. Early psychosurgical techniques in the late nineteenth century resulted in permanent brain damage, irreversible mutilation, and undesired personality changes. Such inhumane practices were considered an attempt to manipulate a person’s consciousness to alter unacceptable behavior [3]. The Willowbrook Hepatitis Studies, which began in the mid-twentieth century, exploited the vulnerability of developmentally disabled children in order to characterize the natural history of hepatitis. Such experiments represented ethical breaches including lack of informed consent, failure to prevent harm, and failure to benefit study participants despite potential benefits to others. The U.S. Public Health Service Syphilis Study at Tuskegee, performed between 1932 and 1972, subjected African American men to several egregious ethical violations, including enrollment without informed consent, manipulation, and treatment withholding, among others [4]. The study contributed to significant mistrust in the medical community due to fears of abuse and exploitation. Due to the legacies of discriminatory practices and systemic racism, racial and ethnic minorities have a long history of mistrust in the healthcare system. For example, recent studies have demonstrated that mistrust of academic and research institutions and investigators is the most significant attitudinal barrier to research participation reported by African Americans [5]. Such breaches in trust, at minimum, create lasting impacts on the provision of medical care and the public opinion of physicians and healthcare workers. This mistrust has roots in a number of ethical breaches in United States history. In the case of Henrietta Lacks, who was a 30-year-­ old African American woman with five children, policy changes highlighting the role of patient autonomy and informed consent changed medical practices nationally. After Henrietta Lacks developed an aggressive form of cervical cancer, tissue samples were removed without her consent, cultured into a stem cell line, and ultimately utilized in several downstream discoveries. The Lacks family received no financial benefits from these discoveries [6]. Physicians have a duty to honor the patient’s right to privacy, sense of control, and decision-making ability, including obtaining access to relevant medical information and obtaining informed consent prior to treatment. Further, physicians must be mindful of power dynamics to avoid abuse of their role. Perhaps because of the life-altering nature of cancer treatment, oncologists and psychooncologists are uniquely positioned to address their patients’ physical, mental, psychological, spiritual, and existential issues. Recognizing this privilege, as well as the propensity for causing harm, are key aspects of establishing trust, maintaining an environment of safety, and prioritizing patient welfare within the patient-physician relationship.

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Breaches of Trust Some of the most common, ongoing breaches of trust within medicine are related to invasion of privacy, information withholding, lack of informed consent, and abuse of power. These types of breaches of trust are explored in this section, and then will be used to identify several specific contemporary examples within social media, personalized medicine, and COVID-19.

Invasion of Privacy Breaches of trust can result from invasion of privacy, which most usually denotes a breach of confidentiality or a failure to keep medical information private. Health privacy, considered a fundamental human right, has been defined as “the right to maintain control over personal information” [7]. The Belmont Report and Health Insurance Portability and Accountability Act (HIPAA) represent federal and state regulatory frameworks for protecting patient information. Most patients demonstrate concern that communication in medical settings remains private. One study demonstrated that only around one-third of patients are aware of the right to privacy [8], reflecting a high level of trust patients place in the healthcare system [9]. The public availability of medical information and the ambiguity of government oversight and public health surveillance each create additional layers of complexity. There are various aspects of patient privacy that are essential to the establishment of a safe patient encounter [10]. Here, we will focus on several challenges to maintaining patient trust in oncology, including invasion of (1) physical privacy, (2) informational privacy, (3) decisional privacy, and (4) associational privacy. Physical Privacy Physical privacy denotes respect and deference toward the human body and personal space. Never is this more conspicuous than in the context of the physical exam, which requires respect for patient dignity while maintaining scrupulous attention to objective findings. This issue is particularly sensitive in patients with breast, cervical, genital, and rectal pathology, who may be subjected to serial examinations or examinations by multiple providers. Urinary catheterization, particularly if a patient is unconscious under anesthesia, is an additional example of a frequently performed invasive procedure with the potential to undermine physical privacy. Physicians should recall that such examinations and procedures can be sources of iatrogenic trauma and consider a trauma-informed approach. Concerns for physical privacy are heightened in settings of vulnerable populations, such as patients with comorbid mental health disorders, neuropsychiatric sequelae of chronic disease, or patients requiring surrogate decisionmakers. Increased awareness and care for physical privacy should be provided during medical examinations with susceptible patients.

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Informational Privacy Informational privacy is a variant of invasion of privacy pertaining to personal data protection. As a variant of patient confidentiality, informational privacy incorporates several aspects of patient care, including autonomy, individuality, respect, dignity, and worth as human beings [11]. Informational privacy also applies to healthcare behaviors, lifestyle choices, cultural persuasions particular to each patient, and test results and objective measures of clinical status. Patients typically assume the privacy of their health data as an extension of their right to bodily integrity [11] and may regard breaches in informational privacy as a violation of self. Despite the consensus on the importance of informational privacy, patients may have mixed perceptions and legitimate concerns pertaining to confidentiality. In one study, less than half of surveyed patients felt that their provider would not mislead them about how their health information was used (42.5%) [12]. This is particularly problematic in an era of increased shared data, which will be addressed later in this chapter. Physicians may make unintentional assumptions about aspects of informational privacy, especially when time is limited and effective patient communication is not prioritized. Furthermore, legitimate disclosures are sometimes warranted in cases related to patient safety or public interest. Informational privacy is also an essential dimension of genetic privacy [13], which has broad personal, social, and economic consequences. As a result of advances in genomics and the availability of personalized genetic testing, physicians have a new responsibility to consider the role, application, and interpretation of genetic data, as well as the duty to inform family members who may carry a risk of developing the disease. However, without additional training in genetics, physicians may not know how to interpret specific markers or what treatment options may be applicable. Other aspects of genetic privacy, including reproductive genetic testing, are beyond the scope of this chapter. However, the use and disclosure of health information and the rules and regulations regarding authorization and consent are becoming more pertinent issues in clinical genetics, oncology, and behavioral health. A delicate balance exists between respect for individual privacy and the judicious use of patient data for the betterment of the public. Public health concerns may justify using patient data without consent, such as in the case of infectious diseases. Through the National Notifiable Disease Surveillance System (NNDSS), the Centers for Disease Control (CDC) can access extensive data on disease incidence and prevalence, such as in the example of HIV and AIDS data. Patients may expect their physicians to provide surveillance data in a discussion about the risks and benefits of treatment, especially as the provision of care moves further away from paternalism. These changing attitudes toward the physician’s role may justify the acquisition and use of patient data to honor the patient’s autonomy. In the examples of disease outbreaks and containment of infectious diseases, personal liberty to make decisions must be consistently weighed with contagion risk. Issues such as mandated reporting can represent breaches of informational privacy and create a significant barrier to appropriate preventive care in the US. This can be

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problematic when invoking a health care proxy, as the health care agent may not be aware of the patient’s disease status, leaving them misinformed and ill-equipped to make decisions on the patient’s behalf. Additionally, patients with HIV are mandated to disclose positive test results to other individuals in danger of contracting the virus and can be charged with a crime if that person is not informed. Mandated reporting of HIV status can therefore represent a disincentive to screening and cause downstream effects on the accuracy of case reporting and public health surveillance. Breaches in patient confidentiality may consequently be necessary from a societal perspective. Decisional Privacy Decisional privacy refers to issues pertaining to autonomy, liberty, and the right to decide. Decisional privacy was first recognized in the landmark case involving Karen Ann Quinlan in 1976, which galvanized the establishment of ethics committees in hospitals nationally. Patients with decisional capacity are ascribed a “privacy right” to refuse life-saving medical treatment. Decisional privacy centers around a patient’s right to make life-altering choices and includes the patient’s right against undesired interference in decision-making. Examples of decisional privacy include end-of-life decision-making and withdrawal of care, a childbearing person’s right to obtain an abortion, a person’s right to utilize assistive reproductive technologies and in vitro fertilization, and the right to choose a medically unhealthy or unsafe lifestyle [10]. In cancer care settings, decisional challenges related to life-limiting diseases and end-of-life issues are common. Providers may maintain trust by supporting a patient’s improved sense of control to make end-of-life decisions [14]. Decisional privacy can be supported by helping patients identify priorities and goals of care while recognizing and respecting patient autonomy. In practice, establishing goals of care involves a nuanced approach that includes balancing decisional privacy with informed decision-making. Physicians should also keep in mind that honoring decisional privacy, and subsequently establishing the patient’s individual goals of care, commonly involves communication with family and loved ones. Associational Privacy Associational privacy refers to the right of the patient to selectively determine which individuals may share or participate in their healthcare experiences, including but not limited to experiences related to illness, recovery, and death [10]. Particularly in oncology settings, specific points along the course of a disease can necessitate changes in the conceptualization of a patient’s intimacy preferences. For example, a patient with a life-limiting complication may prefer fewer visitors than an individual who is entering disease remission. In the United States and other countries in the Western world, patient privacy also extends to patients’ family members. Breaches in trust related to associational privacy may stem from discriminatory practices, particularly against same-sex couples, interracial couples, extended family, or life

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partners who are attempting to participate in the patient’s healthcare experiences. Lacking knowledge or care toward these preferences may damage the patient-­ physician relationship and cause future impairments in the patient’s comfort in communicating treatment decisions.

Withholding Information Fear of the Unknown: Risk Disclosure and Code Status Withholding information, such as failing to disclose risks or failing to provide alternative treatments, can have life-altering consequences for the patient and family. Clinicians may fail to disclose risks for several reasons, including attempts at providing reassurance, reducing anxiety, instilling hope, or building a therapeutic relationship. Patients without adequate understanding may experience preventable harm or maintain a false sense of security in their treatment team or care plan. In oncology, lengthy treatment periods, unknown outcomes, and fear of the unknown can also create significant challenges to disclosure. Patients with poor results may therefore be at higher vulnerability, emphasizing the importance of a trusting relationship between physicians and patients. One common example of withholding information is failing to discuss code status. Failure to attend to code status discussions may be more likely to occur in time-­ sensitive settings such as the emergency department when physicians may have limited access to identification data or health care proxy documentation but are also present in hospital areas without such time constraints. Attempts have been made to create a standardized approach to code status. Still, such approaches are impaired by factors such as patient understanding of code status choices, patient age, comorbidities [15], and social determinants of health. Clinicians may consistently remember to broach the topic but provide a suboptimal quality code status discussion. Patient families often leave code status discussions with a poor understanding of resuscitation measures and the likelihood of hospital discharge [15].

Omission of Error Information withholding also includes omission of error. In a landmark publication, “To Err is Human,” the Institute of Medicine estimated that between 44,000 and 98,000 Americans die yearly due to medical errors [16]. However, medical apologies remain highly controversial, and fears of malpractice claims remain at the forefront of physician barriers. Apology laws, which vary by state, have not yet reduced malpractice rates because they protect expressions of regret but do not protect error disclosure [17]. Lack of transparency in the healthcare system (including financial transparency, lack of quality, or poor communication) may provoke worsening suspicion or mistrust toward providers. Some patient factors may impair the successful apology, such as openness to

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accepting mistakes or motivation to reconcile the relationship. One study demonstrated that patients might prefer female physicians to utilize effective, emotion-centered approaches while male physicians use cognitive, process-centered methods [18]. However, disclosure of human error is essential for patient communication and may reduce anger, promote healing, and repair damaged relationships [17]. Communication barriers, more broadly, may stem from a patient’s cognitive aptitude, generational barriers, decompensated emotional state, or language, cultural, or ethnic differences. Conflicts of Interest Conflicts of interest (COI) within medicine occur when a physician’s specific interest conflicts with the interest of the patient, public health, or the physician’s professional obligations [19]. There is substantial evidence that relationships between health professionals and commercial entities generate conflicts of interest producing bias and that bias results in adverse outcomes such as influenced provider decision-­making, decreased quality of patient care, loss of public trust in medicine, and lack of integrity within research [20]. Common areas of concern for physician COI include accepting company gifts (including meals or drug samples), serving as a promotional speaker or writer on behalf of a company, and financial gain from a company whose products they prescribe, use, or recommend [21]. Evidence shows that physicians who receive a single meal from a pharmaceutical company are more inclined to prescribe the patented, brand-name medication or technology [22]. Physician perceptions that newer treatments are inherently superior can impair an evidence-based discussion of alternative therapies. COI are typically thought to be financial in nature, however recent research shows the negative effects that non-­financial COI may place on medical care. Examples of non-financial COI may include moral or religious beliefs, political affiliations, personal experiences, career advancement, or professional reputation. Some argue these non-financial COI may influence one’s professional practice to the same extent as, if not to a greater extent than, financial interests as they have the potential to lead to ethically problematic behaviors [19]. Concerns related to the impact of a financial relationship on a physician’s clinical decisions prompted the US Congress to include the Physician Payments Sunshine Act in the 2010 Patient Protection and Affordable Care Act which requires medical product manufacturers to disclose to the Centers for Medicare and Medicaid Services any payments or other transfers of value made to physicians or teaching hospitals [23]. The goal of the Physician Payment Sunshine Act was to increase transparency around the financial relationships between physicians, teaching hospitals, and manufacturers of drugs, medical devices, and biologics. Then, in 2011 the US Department of Health and Human Services issued the Final Rule providing a framework for identifying and managing financial COI within medical research. Ultimately, physicians should continually evaluate their motivation for their actions and are responsible for discussing the implications of their industry relationships so that they may develop trusting relationships with their patients to improve care [24].

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Paternalism in Medicine Pitfalls within information withholding are sometimes shrouded in attempts to demonstrate empathy. One example is the subject of “giving bad news,” when physicians may fail to present accurate prognostic data while attempting to manage emotional issues and disappointment. While striving to uphold patient hope and future orientation, which may be beneficial for healing, the physician may inadvertently withhold data that would otherwise assist the patient in preparing for likely outcomes. Empathic failures may arise when a physician is poorly prepared to address generational distrust and iatrogenic trauma, which are factors that may cause patients to appear reactive, defensive, or disengaged from treatment. Physicians may intentionally withhold information from patients as the “secrets of doctors” in an effort to exercise beneficence toward the patient [10]. Such examples of “paternalistic secrecy” may benefit a patient who prefers to remain unaware of their illness course. Such is the case in a patient who is afraid that they will derive unnecessary suffering from the knowledge of illness. From a systems perspective, there may be a perceived financial incentive to withholding information about incidental findings, in that comprehensive workup may contribute little to treatment and result in exorbitant costs [10]. Despite such practices, the Western medical system has moved to honor patient autonomy above paternalism.

Informed Consent Informed consent for medical treatment is a patient’s fundamental right to communicate with the healthcare provider, in which the provider educates the patient about the possible risks, benefits, and alternatives of a given medical intervention. The ability of a medical provider to communicate this information clearly and successfully is the cornerstone of the patient-physician relationship. This ultimately fosters trust and supports shared decision-making [25]. The patient must be capable of making a voluntary decision and has the right to either accept or refuse the proposed treatment to their body. Over the last 50 years, western medicine has shifted from a paternalistic healthcare model where the “doctor knows best” to one that places its highest value on patient autonomy. Autonomy is “directed by considerations, desires, conditions, and characteristics that are not simply imposed externally upon one, but are a part of what can somehow be considered one’s authentic self” [26]. A breach of medical trust related to lack of informed consent causes its greatest harm to patient autonomy. The focus on respect for autonomy was brought to the forefront in the foundation of Principles of Biomedical Ethics laid forth by Beauchamp and Childress in the late 1970s. This theory of medical ethics has come to be known as Principlism [27]. Within Principlism, in addition to respect for autonomy, the other three moral principles identified are beneficence (the value of enhancing the welfare of others), nonmaleficence (the value of avoiding imposing harm on others), and justice (the value of according each person

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their due) [28]. Beauchamp and Childress express, “to respect autonomous agents is to acknowledge their right to hold views, make choices, and to take actions based on their values and beliefs” [27]. This tenet strengthens the legal standing of informed consent. Historical breaches of informed consent led to past and present distrust in medicine. Three of the most influential ethical codes that focus on informed consent are the (1) Nuremberg Code, (2) the Declaration of Helsinki, and (3) the Belmont Report. Each will briefly be explored in relation to breaches of trust and contemporary medicine. Nuremberg Code The year 2022 marked the 75th anniversary of the Doctors’ Trial in Nuremberg, Germany in 1947. The trials were enacted to prosecute the Nazi physicians who participated in cruel and often lethal human medical experimentation on prisoners within the concentration camps in Germany during the Second World War [29]. As a part of the legal judgment of the trials, the court produced a 10-point set of rules now known as the Nuremberg Code. Of these 10 points, the first highlights the importance of informed consent: “The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, overreaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision” [30]. Declaration of Helsinki In June 1964, the 18th Assembly of the World Medical Association produced the Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Research [31]. The Declaration of Helsinki recognizes that applying the Nuremberg Code’s mandate for informed consent for treatment precludes many important areas of research such as dementia, children, and emergency situations. Therefore, the Declaration allows for individuals who cannot consent to clinical research to be enrolled with the permission of the participant’s representative. Belmont Report The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was formed on July 12, 1974, as a response to the appalling acts of the Tuskegee Experiments. The Commission was the first public national body devoted to forming bioethical policy within the United States. The principles identified by the Commission were published as the Belmont Report in the Federal

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Register in 1979. After defining an autonomous individual as “an individual capable of deliberation about personal goals and of acting under the direction of such deliberation,” [32] the Belmont Report proceeds by producing three ethical principles including respect for persons, beneficence, and justice.

Abuse of Power The patient-physician relationship is inherently unequal given the status difference between the patient, who is often vulnerable due to illness or injury, and the physician, who possesses specialized knowledge and skills on which the patient’s health and life depend [33]. The role of a physician is central during life-altering and meaningful times of a person’s life: at birth, death, severe illness, and healing [34]. Within the United States, the patient-physician relationship is considered fiduciary—from the Latin fides, meaning trust, fidelity, or confidence [35]. Therefore, physicians are expected and required to act in their patient’s best interests, even when those interests may conflict with their own. In the words of one court, “the patient must necessarily place great reliance, faith and confidence in the professional word, advice and acts of the physician” [36]. When examining the breaches of trust related to abuse of power, it is important to account for coercive actions, and issues of social justice. Spectrum of Coercion Szmukler and Appelbaum have defined coercion along a spectrum of harm, with increasing problematic concern, from persuasion, interpersonal leverage, inducements, threats, to compulsory treatment [37]. Coercion has been defined as “pressures exerted by one person (or organization) on another with the intention of making the latter act in accordance with the wishes of the former” [37]. Coercion compromises the liberty of a patient as their freedom of choice becomes restricted. This can be complex as some may argue that coercion may be used with the aim of restoring a patient’s ability to use their freedom in a meaningful way and, therefore, promote their autonomy in the long run. The most common justification for coercion in a paternalistic sense is to promote the patient’s best interest and well-being. However, coercion, even when done in the patient’s best interest, undermines respect for persons (see below). Coercion should be thought of as a spectrum, but even the mildest forms can result in harm and a breach of trust. Respect for Persons Within healthcare, respect for persons describes the concept that all individuals should be recognized as having intrinsic worth and, therefore, treated with respect and dignity. Cultural competency within healthcare is the ability of a provider to

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effectively deliver healthcare services that meet patients’ social, cultural, and linguistic needs [38] and, therefore, uphold the value of respect for all individuals [39]. Physicians should strive to utilize patient-centered language throughout their interactions and within the electronic medical record to decrease racial and ethnic healthcare disparities. In one study of negative patient descriptors, black patients were noted to have 2.54 times the odds of having at least one negative descriptor (such as resistant, aggressive, noncompliant) in the history and physical notes compared with white patients [40]. Such descriptors carry negative connotations that may exacerbate healthcare disparities through stigmatization and impact providerattitudes. Treating patients with intrinsic respect through culturally competent care can improve health outcomes and quality of care and lessen abuse of power.

Contemporary Breaches of Trust Social Media and Health Information Social media refers to internet-mediated communication platforms that allow individuals to create content, share messages, and exchange information via text, pictures, and videos [41]. Social media has fundamentally changed the way information is exchanged, including health communication [42]. According to the Pew Research Group, 72% of US adults were using social media in 2021, with more than 80% of adults under age 50 using at least one channel [43]. Social media is readily accessible, easily shared, and frequently distributed. Further, physician use of social media has been steadily increasing along with the general population, and professional use of social media has been measured in at least 65% of physicians [44]. Social media plays a powerful and dynamic role in trust in medicine. By expanding access to health information, social media may help patients feel more empowered and autonomous in their healthcare decisions. Social media tools such as social and professional networking platforms, blogs, media-sharing sites, and virtual reality and gaming environments are available for healthcare professionals, and can be used to enhance patient care, patient education, and health promotion. The widespread nature of social media can be harnessed in health emergencies, such as infectious disease outbreaks. Many patients obtained health information related to the COVID-19 pandemic through social media [45]. Internet Misinformation Patients now have instant access to information on the internet, allowing them the opportunity to arrive at their own diagnosis and treatment, accurate or not. When the patient’s information then collides with their doctor’s views, trust is in jeopardy. Patients may present data from social media use during the patient encounter, and physicians should be prepared to navigate such conversations. Patients may accept misinformation or editorialized information as truths which therefore impairs their

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decision-making. The public should be aware of the high possibility of misinformation within social media, including the existence of fake or malicious accounts disseminating false information. On the other hand, factual information may be taken out of its appropriate biomedical context, causing confusion and health anxiety [46]. When patients present with misinformation, there is an opportunity for physicians to gain an increased understanding of a patient’s health literacy, as well as their care goals while discussing the patient’s independent findings during the encounter. It is important for physicians to avoid becoming defensive and stay focused on the facts. To assist with this process, it may be helpful to pull up a review article from an evidence-based source or provide them with a link or handout of information to review [47]. Professionalism and Social Media Important aspects of trust and social media include boundaries of professional use, the availability and accuracy of health information online, and questions surrounding social media algorithms. Physicians are counseled on the importance of professionalism within social media, particularly toward HIPAA-protected information and patient privacy. Evidence indicates that a physician’s social media behavior impacts patient trust, particularly if that physician posts racist comments online, writes a disrespectful patient narrative, appears intoxicated in a photograph, or writes profanity [48]. A lapse of professionalism on social media may create a breach in trust and in the physician and in the medical profession more generally. Personal Healthcare Technology Personal healthcare technology, such as wearable devices, fitness trackers, smart watches, ECG monitors, and biosensors, is experiencing a broad surge in utilization. Such information-sharing has become socially acceptable among consumers, particularly those pursuing personalized medicine. As health monitoring devices, smartphone health applications, and even consumer DNA testing and precision medicine become popularized and more affordable, providers must be diligent in protecting patient security, data encryption, and anonymity [13]. The patient-­ consumer may experience mistrust in healthcare technology if they are made aware of the downstream use of their information, such as the sale of de-identified information to pharmaceutical companies. Patients may be unaware of the guidelines surrounding informational disclosures, mainly because such devices are relatively ubiquitous and otherwise beneficial to the patient. Big Data “Big data” is a term introduced in the 1990s to describe data sets that are too large to be used with common computer software [49]. As large-scale data collection continues to grow, there is a heightened focus on big data as a potential

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source for improving access to clinical information [50]. Big data can be utilized in commercial, governmental, academic, or public sectors, and includes biometric and biological personal data [49]. Electronic health records are among the largest applications of big data. Telemedicine, which is enhanced by big data, may improve healthcare access and prevent hospital admissions [51]. Despite these benefits, big data carries several ethical quandaries, such as obtaining informed consent for accessing and utilizing patient information or protecting patient data in the event of a malicious software attack. Further, treatment algorithms and artificial intelligence may exacerbate public mistrust by perpetuating discriminatory practices derived from studies on non-representative populations [52]. COVID-19 and Vaccination Hesitancy Despite the profound accomplishment of developing and disseminating a COVID-19 vaccine within a relatively short time frame, a fraction of the American public maintains anti-vaccination views. Psychosocial, environmental, and economic factors may play a more significant role in healthcare decisions as we move away from the paternalistic healthcare model. Physicians must carefully weigh the patient’s autonomy, that is, the right to refuse a vaccine, with the physician’s moral duty of non-­maleficence by limiting the spread of COVID-19. Further, a physician has a moral duty of beneficence to promote health and enhance safety. This can present a significant challenge for physicians looking to deliver the most evidence-based and current treatment options to their patients. Indeed, physician burnout and moral injury demonstrate the critical ramifications of this embattled issue. Vaccine hesitancy early in the COVID-19 pandemic may have been a more understandable problem, as vaccine adherence was encouraged without longterm safety data. Since that time, several clinical trials have assessed the safety of vaccines, but vaccine hesitancy remains pervasive. Reasons for this ongoing misconception are elusive. More broadly, state-enforced COVID-19 vaccination mandates have polarizing effects on the American public, which conceivably stems from a more extensive anti-vaccination campaign rooted in a publication falsely associating vaccines with autism spectrum disorder. This included vaccines to prevent polio, measles, mumps, rubella, and other nearly eradicated diseases [53]. Establishing trust in the American healthcare system is critical to rebuilding a sense of societal resilience. One study utilizing the Our World in Data COVID-19 dataset evidenced that trust within society builds resilience to epidemics [54]. Physicians and healthcare workers can build trust by actively counteracting misinformation, bolstering vaccine equity for racial and ethnic minority groups, and identifying patient values and cultural influences. Additional strategies for establishing trust are discussed later in this chapter.

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Relevance for Oncology Physicians need to be ready to navigate misinformation from social media, as it influences patient expectations and commonly damages patient trust in a specific physician, specialty, or healthcare system as a whole. Misinformation from social media can lead to delays in cancer diagnosis and treatment, and refusal of proven effective treatment, leading to worse outcomes and ultimately premature death. The Journal of the National Cancer Institute published a study in July 2022 identifying that one-third of the most popular articles relating to the four most common cancers (breast, colorectal, prostate, and lung) posted on social media in 2018 and 2019 contained false, inaccurate, or misleading information [55]. What is more troublesome is not just that the information is inaccurate, but rather that the information has the potential to actively injure patients by advocating for approaches that may lead to negative effects on treatment quality and survival. Notably, of the articles that contained misinformation, 76.9% included harmful information supporting alternative treatments inconsistent with expert opinion based on rigorous studies which have been proven to be beneficial [55]. The research observed that articles containing misinformation generated a statistically significant greater number of total engagements (median, 2300 vs. 1600; P = .05) than articles with evidence-based data therefore creating a platform for perpetuating misinformation within silos where certain patient populations may be particularly susceptible to this influence [55]. There are several studies examining trust, shared decision-making, and clinical communication in the context of cancer care [56, 57]. An empirical literature review of 45 relevant papers between the years of 1988 and 2008 demonstrated that patients’ trust in their oncologists is typically high, and is characteristically enhanced by the physician’s perceived technical competence, honesty, and patient-centered behavior [58]. Such relationships were shown to improve adherence and decrease patient fear within the cancer treatment setting [58]. Multidisciplinary teams are common in cancer treatment centers, and may present unique challenges to developing trust as different aspects of patient care are divided amongst team members instead of care from a single provider [56].

Recommendations for Establishing Trust As American healthcare shifts toward a model of patient autonomy, physician willingness to involve patients and their families in medical decision-making has become essential for maintaining and establishing trust. By shifting away from deferential, paternalistic patient relationships and toward shared decision-making, physicians are more likely to convey accountability and establish a patient-centered approach. Patients who perceive their doctors as supporting their autonomy feel more inwardly motivated for treatment. Providing patient education, countering false information, and delivering evidence-based care are examples of trust-building

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approaches. Additionally, physicians should be willing to hear patients’ values, stories, and wishes and facilitate conversations around distrust and breaches of trust at the individual and community level. Physicians should plan to critically examine their practices to assess any barriers to providing equitable, just, and inclusive patient care. Physicians can further eliminate healthcare disparities by advocating for diversity and inclusion within the profession, investigating barriers to healthcare equity, and supporting quality improvement. While physicians must comply with professional standards outlined by state licensing and accreditation bodies, they should recognize that such organizations often do not provide sufficient emphasis on promoting patient trust and eliminating racial and ethnic inequities that lead to health disparities. Physicians can obtain continuing medical education on social determinants of health and implicit bias. In daily practice, physicians should examine how implicit bias can shape behavior and affect the provision of equitable care. Physicians should continually consider factors that increase patient vulnerability throughout treatment, such as gender issues, physical disabilities, socioeconomic challenges, racial and ethnic discrimination, mental health challenges, and ongoing substance use or housing instability. Assessing such factors can create a safer treatment environment and facilitate improved communication, therefore minimizing the potential for breaches of trust. One practical approach involves describing a clinical problem from the patient’s point of view. This may allow the physician to elicit the patient’s perspective of their core symptoms rather than imposing medical jargon or subjecting the patient to implicit bias. Practicing culturally competent care upholds the value of respect for all persons and promotes trust. In addition to incorporating research advances, novel treatments, and the best available clinical evidence, physicians should recognize that a growing body of evidence supports nonpharmacologic approaches to care [59]. Recent recommendations include broadening the clinical perspective to integrate diagnosis (physical exam, prognostic markers, and diagnostic testing) with the whole person (patient history, priorities and relationships, values, and communication styles). Such shifts in practice can help physicians establish an alliance and prevent non-adherence. Indeed, prior studies have demonstrated that a solid therapeutic relationship is critical to effective pharmacological intervention [60]. Trauma-informed care refers to evidence-based trauma interventions or broader, systems-level approaches that integrate trauma-informed practices into healthcare delivery systems. An example of trauma-informed care is the acknowledgement that potentially traumatic exposures have taken place [61]. Practicing trauma-informed care is an important way to gain patient trust in oncology [62]. For example, a person undergoing double mastectomy and chemoradiation may perceive breast surgery as a traumatic life event, especially as they cope with a cancer diagnosis, the label of “cancer survivor,” the re-emergence of who that patient is as a person, and the disfigurement associated with surgery. Considering this perceived medical trauma, compliance with subsequent follow-up care may be highly triggering for this patient leading to avoidance, heightened psychological response, or physical symptoms.

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Patients who have already experienced traumatic life events may be predisposed to retraumatization in the context of medical care, especially in the setting of breast, gynecological, prostate, colorectal, anal, and head and neck cancers. Medically necessary procedures, such as endoscopy or catheterization, are routinely administered to cancer patients, and may trigger retraumatization. Symptoms of trauma or retraumatization may include avoidant eye contact, anxiety, treatment nonadherence, or hesitation to participate in procedures [63]. Such issues represent significant opportunities to provide necessary care for the whole patient (body, mind, and spirit). If neglected, it can create long-lasting impairments in patient-physician trust and communication. Physicians should take all precautions to prevent retraumatization. Such complications may underscore nonadherence behaviors and grossly impair a trusting patient-physician relationship. In addition to respecting privacy, providing truthful and accurate information, obtaining informed consent, and avoiding abuse of power, physicians must consider that trust is established at individual, community, and system levels. As such, trust can be in one’s own personal physician, in the institution of medicine, and in formal and informal health information. Trust plays a central role in medical relationships and depends on establishing a therapeutic alliance between the physician and patient. Physicians may enhance trust by encouraging shared decision-making, addressing healthcare inequities, demonstrating honesty, and incorporating improved communication and feedback mechanisms. Trust leads to better adherence, higher satisfaction, improved health outcomes, and decreased fear and uncertainty. Such aspects of care should be considered from the onset of the patient-physician relationship.

Conclusion This chapter aimed to define breaches of trust through the lens of medical ethics and public trust in medicine. We reviewed contextualized examples of invasion of privacy, information withholding, lack of informed consent, and abuse of power. Examples of physical privacy, informational privacy, decisional privacy, and associational privacy were described. Several ethical challenges inherent in medical oversight were examined. Privacy is considered a fundamental human right and is imperative to establishing safety within the patient encounter and throughout the healthcare system. Physicians have an obligation to respect the patient’s right to privacy, sense of control, and decision-making ability. While physicians are professionally obligated to safeguard patient confidence and privacy within the constraints of the law, the history of medicine contains powerful examples of our failure to honor this expectation. Revisiting this history is essential for developing trusting relationships as it allows physicians to build self-awareness and humility. A successful patient-physician alliance establishes and maintains trust, reinforced by shared decision-making, patient autonomy, and respect for confidentiality. Recommendations for establishing trust between patients and physicians were presented and connected to the field of oncology. Proposals include supporting

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patient autonomy, removing healthcare inequities and barriers, attempting to address challenges from the patient’s point of view, strengthening the therapeutic alliance, and utilizing a trauma-informed approach, to name a few. We invite the reader to consider additional recommendations for reading, which are presented at the end of the chapter.

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38. Nair L, Adetayo OA. Cultural competence and ethnic diversity in healthcare. Plast Reconstr Surg Glob Open. 2019;7(5):e2219. https://doi.org/10.1097/GOX.0000000000002219. Published 16 May 2019. 39. Hoop JG, DiPasquale T, Hernandez JM, Roberts LW. Ethics and culture in mental health care. Ethics Behav. 2008;18(4):353–72. https://doi.org/10.1080/10508420701713048. 40. Sun M, Oliwa T, Peek ME, Tung EL. Negative patient descriptors: documenting racial bias in the electronic health record. Health Aff (Millwood). 2022;41(2):203–11. https://doi. org/10.1377/hlthaff.2021.01423. 41. Chidharla A, Utengen A, Attai DJ, et al. Social media and professional development for oncology professionals. JCO Oncol Pract. 2022;18(8):566–71. https://doi.org/10.1200/OP.21.00761. 42. Chou WS, Gaysynsky A, Trivedi N, Vanderpool RC. Using social media for health: national data from HINTS 2019. J Health Commun. 2021;26(3):184–93. https://doi.org/10.108 0/10810730.2021.1903627. 43. Social Media Fact Sheet. Pew Research Center. Published 7 Apr 2021. https://www.pewresearch.org/internet/fact-sheet/social-media/. 44. Ventola CL.  Social media and health care professionals: benefits, risks, and best practices. Pharm Ther. 2014;39(7):491–520. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4103576/. 45. Anwar A, Malik M, Raees V, Anwar A.  Role of mass media and public health communications in the COVID-19 pandemic. Cureus. 2020;12(9):e10453. https://doi.org/10.7759/ cureus.10453. 46. Al-Balushi AA. In the era of social media: is it time to establish a code of online ethical conduct for healthcare professionals? Sultan Qaboos Univ Med J. 2020;20(1):e25–8. https://doi. org/10.18295/squmj.2020.20.01.004. 47. Brown SJ.  How to handle misinformation in the age of Dr. Google. Fam Pract Manag. 2020;27(5):48. https://www.aafp.org/pubs/fpm/issues/2020/0900/p48.html. 48. Fatollahi JJ, Colbert JA, Agarwal P, Lee JL, Lehmann EY, Yuan N, Lehmann LS, Chretien KC.  The impact of physician social media behavior on patient trust. AJOB Empir Bioeth. 2020;11(2):77–82. https://doi.org/10.1080/23294515.2019.1678533. 49. Mallappallil M, Sabu J, Gruessner A, Salifu M. A review of big data and medical research. SAGE Open Med. 2020;8:2050312120934839. https://doi.org/10.1177/2050312120934839. Published 25 Jun 2020. 50. van Biesen W, Van Der Straeten C, Sterckx S, Steen J, Diependaele L, Decruyenaere J. The concept of justifiable healthcare and how big data can help us to achieve it. BMC Med Inform Decis Mak. 2021;21(1):87. https://doi.org/10.1186/s12911-021-01444-7. 51. Peters GM, Kooij L, Lenferink A, van Harten WH, Doggen CJM.  The effect of telehealth on hospital services use: systematic review and meta-analysis. J Med Internet Res. 2021;23(9):e25195. https://doi.org/10.2196/25195. Published 1 Sept 2021. 52. Wójcik MA. Algorithmic discrimination in health care: an EU law perspective. Health Hum Rights. 2022;24(1):93–103. 53. Hussain A, Ali S, Ahmed M, Hussain S. The anti-vaccination movement: a regression in modern medicine. Cureus. 2018;10(7):e2919. https://doi.org/10.7759/cureus.2919. 54. Korn L, Böhm R, Meier NW, Betsch C. Vaccination as a social contract. Proc Natl Acad Sci U S A. 2020;117(26):14890–9. https://doi.org/10.1073/pnas.1919666117. 55. Johnson SB, Parsons M, Dorff T, et al. Cancer misinformation and harmful information on Facebook and other social media: a brief report. J Natl Cancer Inst. 2022;114(7):1036–9. https://doi.org/10.1093/jnci/djab141. 56. Whitney RL, White AEC, Rosenberg AS, Kravitz RL, Kim KK.  Trust and shared decision-making among individuals with multiple myeloma: a qualitative study. Cancer Med. 2021;10(22):8040–57. https://doi.org/10.1002/cam4.4322. 57. Golden SE, Ono SS, Thakurta SG, et al. “I’m putting my trust in their hands”: a qualitative study of patients’ views on clinician initial communication about lung cancer screening. Chest. 2020;158(3):1260–7. https://doi.org/10.1016/j.chest.2020.02.072. 58. Hillen MA, de Haes HC, Smets EM.  Cancer patients’ trust in their physician—a review. Psychooncology. 2011;20(3):227–41. https://doi.org/10.1002/pon.1745.

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59. Mintz DL, Flynn DF.  How (not what) to prescribe: nonpharmacologic aspects of psychopharmacology. Psychiatr Clin North Am. 2012;35(1):143–63. https://doi.org/10.1016/j. psc.2011.11.009. Epub 2011 Dec 15. PMID: 22370496. 60. Totura CMW, Fields SA, Karver MS. The role of the therapeutic relationship in psychopharmacological treatment outcomes: a meta-analytic review. Psychiatr Serv. 2018;69(1):41–7. https://doi.org/10.1176/appi.ps.201700114. 61. Substance Abuse and Mental Health Services Administration. National strategy for traumainformed care operating plan. Interagency Task Force on Trauma-Informed Care; 2018. https:// www.samhsa.gov/sites/default/files/trauma-informed-care-operating-plan.pdf. 62. Lawson KC, Lawson DH. Insights into the psychology of trauma should inform the practice of oncology. Oncologist. 2018;23(7):750–1. https://doi.org/10.1634/theoncologist.2018-0091. 63. Grossman S, Cooper Z, Buxton H, et al. Trauma-informed care: recognizing and resisting retraumatization in health care. Trauma Surg Acute Care Open. 2021;6(1):e000815. https://doi. org/10.1136/tsaco-2021-000815.

Further Reading Clinical Ethics Beauchamp TL, Childress JF. Principles of biomedical ethics, 8th ed. 2022. Jonsen AR, Siegler M, Winslade WJ. A practical approach to ethical decisions in clinical medicine, 9th ed. American Medical Association. Code of Medical Ethics overview. American Medical Association. Published 2018. https://www.ama-assn.org/delivering-care/ethics/ code-medical-ethics-overview. Beltran-Aroca CM, Girela-Lopez E, Collazo-Chao E, Montero-Pérez-Barquero M, MuñozVillanueva MC. Confidentiality breaches in clinical practice: what happens in hospitals? BMC Med Ethics. 2016;17(1). https://doi.org/10.1186/s12910-016-0136-y. Peterson JLH.  Confidentiality in medicine: how far should doctors prioritise the confidentiality of the individual they are treating?. Postgrad Med J. 2018;94(1116):596–600. https://doi. org/10.1136/postgradmedj-2018-136038. Plaiasu MC, Alexandru DO, Nanu CA. Physicians’ legal knowledge of informed consent and confidentiality. A cross-sectional study. BMC Med Ethics. 2022;23(1). https://doi.org/10.1186/ s12910-022-00835-3. Ethical, Legal, and Social Implication of Cancer Research | Resources | CDP. cdp.cancer.gov. https://cdp.cancer.gov/resources/elsi/ethical_privacy.htm. Allen A.  Privacy and medicine. Stanford encyclopedia of philosophy. Published 2021. https:// plato.stanford.edu/archives/spr2021/entries/privacy-medicine. Accessed 18 Dec 2023. Institute of Medicine (US) Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule; Nass SJ, Levit LA, Gostin LO, editors. Beyond the HIPAA privacy rule: enhancing privacy, improving health through research. Washington, DC: National Academies Press (US); 2009. 1, Introduction. https://www.ncbi.nlm.nih.gov/books/NBK9576/. Wolfensberger M, Wrigley A. Trust in medicine: its nature, justification, significance and decline. Cambridge University Press; 2019. Hostetter M, Klein S. Understanding and ameliorating medical mistrust among Black Americans. The Commonwealth Fund. Published 14 Jan 2021. https://www.commonwealthfund.org/ publications/newsletter-article/2021/jan/medical-mistrust-among-black-americans. Niranjan SJ, Wallace A, Williams BR, et al. Trust but verify: exploring the role of treatmentrelated information and patient-physician trust in shared decision making among patients with metastatic breast cancer. J Cancer Educ. 2020;35(5):885–92. https://doi.org/10.1007/ s13187-019-01538-x.

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Applications and Recommendations in Clinical Practice Featured Topics in Patient Safety. Patient Safety Network. Published 1 Dec 2023. https://psnet. ahrq.gov/topics-0. Levit L, Balogh E, Nass S, Committee on Improving the Quality of Cancer Care: Addressing the Challenges of an Aging Population; Board on Health Care Services; Institute of Medicine, et al., editors. Delivering high-quality cancer care: charting a new course for a system in crisis. Washington, DC: National Academies Press (US); 2013. Epstein RM, Street RL. Patient-centered communication in cancer care: promoting healing and reducing suffering. National Cancer Institute; 2007. https://cancercontrol.cancer.gov/sites/ default/files/2020-06/pcc_monograph.pdf.

Chapter 4

The First Encounter with Oncology: Patient Experience and Requisite Trust Amith Ahluwalia and Andrew Epstein

Cancer medicine has come far from the radical surgeries first done by the Greeks and Romans, later perfected by the nineteenth-century surgeon William Halsted [1], to the use of multimodality treatment involving surgery, anticancer medicines, and radiation therapy. Oncology, as a discipline, now harnesses the ability to manipulate the immune system and molecular mechanisms into preciously targeting cancer cells. Treatment plans are increasingly complex, requiring ever more complicated explanations and nuanced communication. These advanced treatments arose alongside new modalities that allow for earlier detection of cancers even before patients feel unwell [2]. This shift from something that can be seen and felt to a scientifically understood but mysterious illness that presents itself insidiously in otherwise healthy patients underpins one of the many difficulties faced by oncologists when communicating about cancer treatment strategies. Often patients will feel well and are making a giant leap of faith that toxic chemotherapys, radical surgeries and radiation are needed, trust in their doctors is essential for them to truely feel safe when making these decisions. They may feel well but are not and the medications and treatments perscribed have countless potental side effects that could make them feel unwell. In so many words, physicians ask patients to trust in the science and their abilities. This is a monumental request and requires an extraordinary degree of trust given the implications of the disease and the side effects from treatment. Many people fear cancer more than other chronic or terminal diseases [3]. The treatments for aliments such as a broken bone, an injury, or an infection intuitively

A. Ahluwalia (*) Confluence Health, Wenatchee, WA, USA A. Epstein Memorial Sloan Kettering, New York, NY, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 D. C. McFarland et al. (eds.), The Complex Role of Patient Trust in Oncology, Psychiatry Update 5, https://doi.org/10.1007/978-3-031-48557-2_4

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make sense: a bandage for a wound and a medication for an infection. In the case of cancer, microscopic cells grow uncontrollably for reasons that even today can sometimes remain unexplained. Cancer, while not a single disease, is unified by its characteristic way of self attacking self. Physicians often behave as if the affronting disease is fully understood, and often patients trust that this is true. The reality is that cancer has never been truly understood, even now. Over the ages, despite physicians often believing that science was on the verge of curing cancer, its complexity is perpetually humbling. Despite how advanced the understanding of cancer has become, a  significant gaps remain. Even evidence-based knowledge collected through highly refined clinical trials is limited by design constraints which reduce their findings’ generalizability. How can oncology clinicians ask patients to trust treatment recommendations when the diseases they are treating are not entirely understood? Oncologists are ethically bound to provide meaningfully informative information about patients’ conditions and their recommended treatments. Oncologists should disclose the limitations of the knowledge from which treatment decision are drawn. These are often difficult conversations but are necessary. Being honest about our limitations and what is known and what is unknown is essential to building trust with patients. Cancer discovery has evolved rapidly both in the medical field and in society. The challenges in gaining patient trust are complex, multifaceted, and timely. They require a skilled interpretation of patients’ wants and needs and the differences between a patient’s need to know information about their medical situation and their need to feel understood as a person with a disease [4]. The initial encounter between a patient and their oncologist is fundamentally a high-risk encounter. The ability to gain a patient’s trust requires a combination of medical competence, competence in communication, care, and honesty. Also, it should be clear that every physician decision also has moral implications. In the past, physicians have predominantly adopted a paternalistic philosophy on patient care, often making decisions for a patient, rather than partnering with them; this antiquated modality is usually not optimal to gain patient trust, as it does not consider patients’ values and their preferences for information receipt and their decision-making styles. The modern foundation of ethical patient care is based on four principles: Autonomy, Justice, Beneficence, and Non-maleficence. These principles are at the forefront of the doctor-­patient relationship and are of the utmost importance during the first oncology encounter. There are many unknowns for an oncologist before meeting the patient in the first visit. While reviewing and understanding the medical details is essential, so is anticipating and eliciting patient needs and perspectives, as well as building the foundation of a trusting relationship between parties. The successful formation of a therapeutic alliance between a patient and their oncologist is associated with a better quality of life regardless of the degree of distress patients may be experiencing [5]. This chapter will discuss how an oncologist can approach the initial encounter to allow for an optimal relay of information, trust building, and the formation of a strong therapeutic alliance between the patient and their oncology clinicians. Further, the chapter will discuss various aspects of physician competence and its

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role in building trust with patients. Finally, cancer often brings foreboding thoughts of death and suffering [3]; it is vital to understand these concepts to help build a therapeutic relationship when meeting with a cancer patient for the first time.

Anatomy of the First Encounter The initial meeting between patients and their oncologists is challenging, and the stakes are high. It is crucial to plan to anticipate patients’ expectations and viewpoints in preparation for an initial visit, as patients’ perspectives and expectations are paramount in the shared decision-making process. The first encounter involves “setting the stage”: this can begin after initial greetings with the doctor stating what they would like to cover and asking the patient the same, as well as whom else should be involved in the discussion and in how much detail the patient prefers to discuss medical information. A lot of ground must then be covered, from a discussion of the diagnosis and the natural history of the cancer type to discussing prognosis and treatment options of a patient’s disease. Cancer patients often have a high degree of psychosocial distress stemming from various sources. Respectful and appropriately tailored communication about the diagnosis, prognosis, potential treatment trajectories, and survival scenarios can positively affect patients [6, 7]. Beyond these aspects, the initial visit can set the tone for future visits and involves creating a therapeutic alliance and laying the foundation for a trusting relationship. Building trust involves full disclosure of the illness in the most patient-centric manner possible, which is both a moral and legal right; however, difficulties can arise with how much patients wish to know regarding their illness [8, 9]. Ineffective communication can impact patients emotionally and can leave them feeling anxious and uncertain [6]. Without careful navigation during these initial stages, effectively partnering with patients through their cancer journey can become challenging and result in a lack of trust and non-adherence to treatment [10]. From discussing treatment options to the potential discussion of end-of-life care, without a solid foundation of trust, these delicate conversations can become almost impossible to navigate adequately. Good communication is fundamental to creating a trusting relationship. Poor communication skills have been shown to be linked with patient displeasure and are commonly cited among the most common complaints about physicians [11–13]. Given the importance of clear communication to help create trust, various approaches to structure the initial encounter are proposed. The intersection between a cancer diagnosis and ‘breaking bad news’ are evident; in both, there is an overarching fear of pain and suffering that accompany the confrontation of one’s mortality [3]. These discussions require a clear explanation of a patient’s disease and the treatment goals. One study involving lung and colon cancer showed that at least twothirds of patients with advanced cancer did not understand the role of treatment in their care [14], indicating a gap in the information regarding the treatment goals provided these patients. While it is important to focus on the medical information

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relating to patient care a balanced approach is required. A lack of empathy with a focus only on information can lead to poor patient outcomes. In contrast, over-­ reliance on compassion without enough attention to the cancer-related details can decrease hinder and undermine the transfer of information [15]; hence the cancer patient’s double need: the need to know, and feel known [4]. An oncologist can balance these two aspects and provide information and support to the patient by acknowledging this need during the initial encounter. In other words, the oncologist needs to communicate and transfer information to the patient in a way that is patient specific and appropriate but they also need to listen and preceive patients needs and feelings. One proposed method involves the use of the “SPIKES” and “NURSE” models [16, 17]. These two communication strategies have been described extensively for delivering serious news in a structured way that is empathic, intuitive, and respectful. The two models are based on ethical norms, such as respecting patients’ autonomy, so that informed decision-making can be conducted while supporting patients emotionally when serious news is communicated. They are geared toward creating a trusting relationship between providers and patients. Patients want to be supported, especially when emotions run high and therefore, the pacing of information in a way that is accessible to the patient is crucial. The patient needs to integrate the information in a way that is unique to their circumstances. The handling of information without skilled communication can be detrimental to the formation of trust [18, 19]. The “SPIKES” and “NURSE” models can therefore be used as a framework for oncologists to communicate and structure an initial consultation with patients. Using these models can help balance the delivery of information with empathy. Multiple studies have shown the importance of a clinician displaying competence across multiple domains [6, 20–22]. The incorporation of the SPIKES model can help. When first reviewing a patients chart and forming a treatment plan a oncologists should envision and discuss a shared agenda for the visit and possible goals to set. However a treatment plan can only be properly created after meeting with and understanding a patients values and goals. Before this first meeting, questions, and challenges unique to each patient, should be anticipated. Formal and informal discussion with other clinicians involved in the patient’s care can be helpful to facilitating this preparation to understand a patients clinical course which can provide clues to the questions and state of mind a patient may have before the initial encounter. Preparing in this way and being ready for each patients unique case, can create a smoother visit, increasing a patient’s comfort level with a physician while also displaying a physician’s competence and care for a patient. Multidisciplinary forums are key to providing comprehensive, up-to-date cancer care. These forums are formalized, structured meetings usually called ‘tumor boards’ where surgeons, radiation and medical oncologists, radiologist, pathologists, and any other involved clinicians can deliberate on the direction of care. Setting an agenda of items that both the patient and the doctor would like to address helps structure the visit so all that all or most concerns can be covered. Topics include discussing the illness and treatment options and learning about the patient and their motivations. Multiple studies have shown that patients value good

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listening skills, trustworthiness, and a caring approach in their doctors [18, 19]. Patients want to be acknowledged as a unique person [20], and there is a great desire to make sense of the medical information they are being given. Thus, clear explanations tailored to each patient’s individual needs are essential. Avoiding medical jargon is paramount to helping patients understand their disease and needs tailored to their ability to understand their illness. This kind of communication has been shown to improve physician satisfaction and, in turn, trust [21]. Explanations of complex information need to be balanced with empathy and require the oncologist to learn about the patient’s own goals and the impact of this diagnosis on their lives. Physician-controlled treatment and care decisions versus shared decision-making have been associated with patients’ lower quality of care [23]. An important aspect of an initial consultation is addressing how much information they wish to receive and how they would like to receive it. This can be achieved by simply asking: “When discussing this medical issue, do you prefer to receive all details, some or none, and if none, with whom do you prefer I discuss things?” And “would you like more information in writing?” Age and culture-dependent factors also influence how patients may want to receive their information. Many patients prefer to involve family and caregivers in their care, or to completely defer all medical discussions and decisions to a family member [9, 24]. A patient may have a strong wish for their family to play or not play a role in their care. This is essential information when determining for whom and when to provide important information [25]. During the initial consultation, identifying key players involved in a patient’s life and care can improve a physician’s ability to create a trusting relationship. Initial oncology consultations are complex and usually involve a sense of urgency. The initial visit should contain clear communication, an acknowledgment and acceptance of patients’ goals and values, and a structure to better understand treatments and goals of care. Various structured interview techniques can be helpful to achieve this (e.g., SPIKES and NURSE models). Clear explanations improve patients’ confidence in their clinicians and help establish a foundation of trust. Patients want to feel confident in the people taking care of them [20], and strategies like this can help solidify their confidence. A final aspect in the anatomy of the first encounter with a cancer patient involves reinforcing the idea of non-abandonment. Patients may fear retribution if they do not agree to a treatment plan, or a hidden agenda by either the oncologist or the medical community at large. Others may fear not living up to being a “good” patient, or being abandoned if their cancers progress, or if their area side effects. Telling a patient that an oncologist‘s support and the support of the oncology team is unconditional, regardless of their prognosis, treatment options, or treatment choices, can be a powerful tool when bonding with a patient. It can increase a patient’s comfort level and make it easier for them to make decisions that align with their goals, rather than the goals they may feel a doctor or family member may wish for them. These tenets of unending relationship building and maintenance, no matter what, align with classic adage by Edward Livingston Trudeau’s “To cure sometimes, to relieve often, to comfort always.”

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Physician Competence and Trust From the perspective of the patient, competence is multifaceted and involves more than a clinician’s medical knowledge; it also encompasses the ability to communicate with patients, to be able to understand and interpret their needs ranging from uncontrolled symptoms to distressing emotions, and to be able to address their cultural needs [6, 20–22]. Displays of competence are vital in decreasing distress in cancer patients, but can be especially challenging in the modern world due to the rapid evolution in cancer care. With nearly three-quarters of patients reporting internet use for cancer information and support [26], patients are more informed on their disease before their first visits with an oncologist than ever before. Often, they may feel inclined to test the limits of a physician’s abilities and knowledge and failure to display competence can have lasting effects on the trusting relationship between an oncologist and their patient, leading to non-adherence and poor satisfaction with doctors and their care. Physician attention to communication subtleties is a defining aspect of patient-­ centered care [21], and a lack of attention is associated with lower physician satisfaction levels. Often, patients will not directly disclose their feelings to a physician and instead they will use indirect statements to express their emotions. Multiple studies have shown that physicians do not always detect these cues, which results in missed opportunities for empathic understanding and questioning that allow patients to express further their emotions [27–29]. Examples of statements that may further an oncologist’s understanding of the patient’s situation include “tell me more about how [X] impacts you?” or “help me understand what you mean by that?” A display of empathic competence reduces patient anxiety and increases patient satisfaction and adherence [16, 30]. Fortunately, communication skills and empathy can be taught and ultimately improve patient care [31]. A 2014 study examined the effect of a 2-day communication skills training course and its impact on patients. The study showed that communication skills training improved patient satisfaction and trust in their physician while reducing anxiety and depression [32]. Within oncology, obtaining a second opinion is a common occurrence and relates to trust. A 2017 systematic review showed that the incidence of patient second opinions can be as high as 88% [33]. In this analysis, patients were motivated by a need for certainty, a lack of trust in their primary provider, and dissatisfaction with communication. Another study investigated the time and topics discussed during a second opinion visit. It showed that 12.5% of the consultation was spent discussing the referring oncologist, with patients being predominantly critical of their primary oncologists [34]. In this study, areas of displeasure identified included primary oncologists acting in non-empathic ways and a lack of explanations regarding treatments and prognosis. Patients perceived these physicians as incompetent regarding their emotional and informational needs; these studies provide a glimpse into the patient experience and highlight the importance of clear communication.

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Beyond a clinician’s competence in empathic and compassionate communication, competence in other facets of medical care is of equal importance. Medical knowledge in both the field and treatments are also critical to establishing trust. A 2014 study looked at the effects of competence, honesty, and caring on trust. In this study, improved confidence in a physician was correlated with displays of competence by using various phrases that emphasized experience in specific techniques or treatments and demonstrations of knowledge based on attending conferences or literature review. Examples from the study included “In our center, we all have our specialization, so we perform certain procedures much more often to become even more skilled in them.” and “The scientific literature clearly demonstrates that [this treatment] offers the best chance at survival. I recently attended a scientific conference, where it was confirmed once more that this operation is the best possible treatment.” The study also showed that open and honest communication about treatment side effects or poor surgical outcomes helped foster patients’ sense of trust in their doctor. When phrases showing competence, honesty, and care were all applied, there was a significant increase in the patients’ trust in an oncologist. The bond formed was strong enough that an oncologist was more likely to be recommended to others [35]. Historically, an often-overlooked area of competence is that of cultural competence. Non-white populations have reported higher levels of distress in the cancer setting, which is often undertreated [22]. Despite the apparent effect of being culturally competent on building trust with patients, a 2020 study found that nearly a third of non-white minorities could not access culturally competent physicians through most of their care [36]. Studies have further shown that physicians who learn about other cultures had higher patient satisfaction ratings [37]. While some physicians may feel culturally competent, misconceptions regarding the discussion of terminal prognosis in various cultures are common, especially since these topics are culturally bound and emotionally sensitive. It is vital to be aware that there is no culture where a discussion of terminal illness cannot be discussed even in a modified way [38]. Thus, it is essential to inquire and learn about each patient’s beliefs regarding how and what information they wish to receive. Despite showing competence, honesty, compassion, and care, some aspects of building trust with a patient may be beyond the control of a physician. A 2017 study investigating healthcare distrust showed that institutional distrust could impact patient choices significantly, resulting in a 22% increased incidence of patients not following treatment recommendations. Interestingly, this trend was independent of trust in a specific physician; physician trust did not overcome distrust of an institution and did not decrease treatment discordance in the presence of institutional distrust [39]. This study highlights an additional level of complexity in patient trust and introduces a broader problem in cancer care beyond a physician’s ability to empathize and communicate with their patients.

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Death, Distress, and Fear A new diagnosis of cancer brings with it complicated emotions. Cancer is the most feared of all illnesses and carries connotations of death and suffering [3]. The differences in how people process information can result in unpredictable emotions ranging from anger to acceptance. In some, learning about their diagnosis can be so distressing that it results in denial. Roughly 30% of cancer patients report having significant and disruptive distress following a cancer diagnosis [22]. Many of these patients require or would benefit from psychiatric or psychological interventions. Another analysis showed that more than half of studies assessing cancer-related emotions reported that participants’ fear was related to their proximity to cancer encounters, such as a family or friends with cancer, and personal risk assessment [3]. Specifically, encounters with loved ones who experienced cancer force participants to address their mortality, often eliciting fear [3]. Previous encounters with cancer, such as witnessing a loved one die or suffer from cancer, can influence patients’ perspectives on their cancer and its treatments. Physicians need to be prepared, as new cancer patients with these past encounters and unpredictable emotions may be primed for increased distress from their diagnosis. Eliciting such experiences, empathizing with emotions that might arise, and being open to discussions regarding death can help patients cope and contribute to a greater sense of partnering and trust. In the same study conducted by Vrinten et al., the proximity of cancer was also associated with the experience of symptoms. Often patients who experienced symptoms from their cancer diagnosis had enhanced distress not only from the symptoms themselves but also because of the association of these symptoms with their prior experiences with cancer and dying [3]. Patients who experience more pain and sleep disturbances reported poorer physician satisfaction ratings [40]. Severe pain (>7/10 on a 0–10 scale) nearly doubles patient dissatisfaction with their physicians, and the failure to address pain was associated with more suffering in cancer patients. Furthermore, patients with poorly controlled pain are more likely to report that their physician is less engaged in their care than those with better pain control [41]. These studies illustrate how patients can lose trust in physicians who are perceived as less involved in their symptom management. In this way, addressing symptoms related to cancer can significantly build trust, much like clear communication, and partnering with patients to address the primary disease and its effects can build trust. As important as it is to build trust by actively attending to cancer symptoms, this trust can be easily undone if the cancer treatments are more negatively impactful on a patient than the cancer itself. Chemotherapy and other cancer treatments themselves are distressing. These treatments can often inflict pain, debility, and suffering. A study on pain management in cancer showed that nearly 10% of pain reported in cancer patients came directly from the treatments themselves [40].  In some instances, the fear of cancer treatment is greater than the cancer itself [3]. Being mindful of this during the initial patient visit can help build trust.

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Cancer patients are in a propetual state of vulnerability. They are asked to trust despite commonly not understanding the treatments they are receiving, and simuntanously being informed of all the consiquences and side effects that can come from treatment.  Beyond sequelae of cancer treatment, poor outcomes from surgeries, devastating autoimmune side effects from immunotherapy, or a bone marrow transplant can leave lasting scars on patients’ lives that never remit. Side effects such as hair loss and other physical changes due to treatment can be difficult for patients to tolerate emotionally. Historically, surgeries for cancer would significantly disfigure cancer patients. A famous example is the radical mastectomy pioneered by Halsted, which almost guaranteed a loss of movement, sensation, and the development of chronic lymphedema and risk of infection. Also, these disfiguring operations contributed to a lost sense of femininity following a mastectomy [42]. A male patient may experience similar distress from erectile dysfunction complicating a radical proctectomy [43]. The possible effects of cancer treatment are well known and can be catastrophic, often making the discussion of treatment options invariably challenging, as physicians do not want to scare patients when explaining the long list of possible side effects of a treatment regimen. The need for thoughtful conversations regarding potential side effects or poor outcomes is crucial when establishing a therapeutic alliance and trust. While treatment options are not always discussed on an initial oncological visit (as discussion of further workup needs may take priority), a thoughtful conversation regarding the possible side effects and expectations for outcomes is vital to establishing and maintaining a trusting relationship between an oncologist and their patient. Death is difficult to discuss. Numerous studies have reported that clinicians find it difficult to initiate these discussions. Cancer is closely linked to death and fears of death [3]. Yet patients who are beginning treatments look forward to favorable outcomes and their clinicians want to provide hope and display a positive attitude [38]. While hope is essential and linked with patients’ ability to cope with cancer, there is often a disconnect between physicians’ and patients’ views of long-term survival [14, 44]. A sociological study conducted with melanoma patients found that many patients preferred taking riskier treatments that offered a smaller chance at more prolonged survival than a treatment that offered a greater chance of response but less prolonged survival (i.e., a longer median of survival) even if the chance of a robust prolonged survival occurred in 15% of patients over treatment that offered a longer median survival [45]. This phenomenon was described as a preference for a hopeful gamble over a safe bet. In a 2020 study conducted on lung cancer patients, the emphasis on a chance for longer-term survival was seen again and contrasted with physicians’ focus on expected or median survival [46]. The study highlights the importance of physicians asking patients about their views on cancer treatment and reinforces the need to have thoughtful discussions regarding treatment goals and expectations. A study in advanced cancer showed that as many as 69% of metastatic lung cancer patients and 81% of metastatic colon cancer patients did not understand that their treatments were non-curative in intent [14], and this study emphasizes the unmet needs in communication. Clinicians should remember that

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patients overwhelmingly want to know about their disease, whether it’s good or bad news [9]. Timely and explicit discussion of a cancer diagnosis and its implications has been linked with lower levels of anxiety and depression [8].

Conclusion The successful initial visit between an oncologist and a patient establishes the foundation for trust. Cancer care is complex and involves careful consideration of many factors including the cancer burden and available or preferable treatment options. Oncologists must simuntanously know the patient and the disease they are treating. Oncology clinicians must consider the trust required to accept treatment and once established, how to cultivate trust after the initial encounter. Structured communication mnemonics such as SPIKES and NURSE can be helpful guides in navigating the interpersonal landscape of the patients hopes, fears, values, and desires as well as how to structure the initial encounter for success. The initial encounter between a patient and their oncologist always comes with its unique set of challenges and complexities. An empathic approach that seeks to learn more about the patient and their individual set of needs is indispensable to building a supportive and trusting relationship between an oncolgist and their patient. Trust is the cornerstone of a strong partnership between the patient and their oncologist. Displaying competence while providing honesty regarding prognosis, treatments, and outcomes is essential to building a trusting relationship and must be established early in a patient’s cancer care. A trusting relationship built on communication, honesty, and competence is essential for helping patients navigate cancer.

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Chapter 5

The Role of Trust in Oncology Across Populations and Cultures: Implications for Health Inequities and Social Justice Emily H. Wood and Manali I. Patel

Introduction For decades, cancer incidence and survival outcomes have steadily improved in the United States. A recent report by the American Cancer Society showed a 32% reduction in cancer death rates from 1991 to 2019 with over 3.5  million deaths averted [1]. Most of this progress has been attributed to improved early cancer detection and novel treatment options, such as precision medicine and targeted therapies, specifically for lung cancer. As new therapies continue to be developed, improvements in progression free survival and continued declines in cancer incidence and mortality are expected. Yet, racial/ethnic minority groups and populations from low socioeconomic status (SES) backgrounds as well as many populations globally are persistently less likely to reap benefit from these clinical advancements due to limited access and other multi-level barriers. In the United States, the medical establishment has had a long-standing history of mistreating individuals from particular racial/ethnic backgrounds and individuals from low socioeconomic status backgrounds. Black Americans, for example, are consistently undertreated for pain relative to White Americans [2]. Among populations with cancer, racial and ethnic minority groups and populations from low SES backgrounds with cancer are less likely to receive a

E. H. Wood (*) Division of Oncology, Stanford University School of Medicine, Stanford, CA, USA e-mail: [email protected] M. I. Patel Division of Oncology, Stanford University, Stanford, CA, USA Medical Services, VA Palo Alto Health Care System, Palo Alto, CA, USA e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2024 D. C. McFarland et al. (eds.), The Complex Role of Patient Trust in Oncology, Psychiatry Update 5, https://doi.org/10.1007/978-3-031-48557-2_5

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timely diagnosis, less likely to receive guideline-based treatment including precision medicine, and less likely to be included in clinical trials. These deficiencies in care due to perpetual historical injustices and inequities inherent in the structure of the health care system result in increased morbidity and mortality among these populations compared with White and more affluent populations [3–6]. Continued failure to address these historical and continuing systemic inequities result in medical mistrust which is defined as “mistrust of the healthcare system and its providers [7].” Building trusting relationships with communities and patients is essential for ameliorating disparities and ensuring equitable access to care. To date, trust in the health care system and in the individuals who deliver care in the system tends to be greater among older, more educated, and White patients with cancer [8]. Why is this? How can we foster trust in the health care system among diverse patient populations? This chapter will explore these questions, provide an overview of current challenges, summarize evidence-based models that promote trust, and highlight future opportunities for engendering trust in cancer care delivery systems.

The Socioecological Model for Trust Given the many factors that influence patient trust in health systems, solutions to engender patient trust require multi-level approaches. The Socio-Ecological Model (SEM) is a comprehensive framework for understanding these factors and serves as a guide for approaching this discussion. These models were first proposed in the 1970s by Urie Bronfenbrenner and have been widely applied in public health to describe how individual, interpersonal, community, organizational, and policy level factors influence people’s health-related knowledge, beliefs, attitudes, and actions [9]. SEM has been applied to many grand challenges in public health including reducing diabetes and obesity, tobacco control, promoting safe sex, and clinical trial inclusivity [10–13]. We will identify barriers and facilitators to trust at each level of the model (Fig. 5.1) beginning at the most micro–the individual level.

Individual-Level Barriers and Facilitators to Trust Personal beliefs, experiences, and values influence trust in cancer care delivery systems and the cancer care team. Given the intense, often longitudinal nature of cancer treatments, the therapeutic relationship between the individual, the cancer care delivery system, and the cancer care team is paramount for an individuals’ experience and outcome. Common barriers to engendering trust include medical mistrust, low health literacy, and cultural and/or religious values and preferences that misalign with Western medicine and more traditional approaches for cancer treatment. Previous negative experiences such as discrimination in a medical setting can result in medical mistrust. Medical mistrust greatly hinders care seeking behavior among patients,

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The Social Ecological Model: Barriers to Trust in Oncology Care Social & Policy Level

Financial misalignments in traditional fee-for-service payment models

Need for policy changes to support community health workers (CHWs) as members of the care team whose services are reimbursable

Lagging legislation to support patient needs and reduce financial toxicity of cancer care

Lack of incorporation of Patient Reported Outcomes (PROs) into studies and quality improvement efforts

Community & Organizational Traditional payment models do not adequately support hospice and palliative care usage

Limited provider time for each visit Insufficient diversity in oncology care teams

Not enough CHWs or health Language navigators barriers, lack of interpreter services, lack Oncology of multilingual workforce materials shortages

Disparities in access to precision medicine, clinical trials Historical abuses in medicine & research

Lack of universal access to support groups in many languages & for many conditions Poor Inadvertent support of communication by acute care usage, public health even at end of life leaders during COVID-19; limited Interpersonal messaging to cancer patients Insufficient training on patient-centered Disjointed & communication complex care Insufficient systems provider training for cultural Individual competence Medical mistrust

Low health literacy

Cultural / religious values in conflict with Western medicine

Previous negative medical experiences

Fig. 5.1  Barriers to trust in oncology care by level of the Social Ecological Model

their perceptions of the cancer care team and the cancer care delivery system, and an individuals’ expectation of their cancer treatment experience and their clinical outcomes. Oncologists’ perceptions of patients’ medical mistrust can influence their expectation of the likelihood for a patient to adhere to treatment and clinical outcomes. While victims of historical abuses such as the Tuskegee Syphilis Study or forced sterilization programs have resulted in medical mistrust, among communities of color, medical mistrust may be present even if the patient him/herself has not experienced a negative interaction in healthcare [14–16]. Penner et  al., for example, examined interactions between Black patients and their oncologists by measuring patient suspicion prior to meeting with an oncologist, coding patient behavior during the visit, and their perceptions after the visit [17]. Higher levels of pre-visit patient suspicion were significantly associated with lower post-visit ratings of oncologists’ patient-centeredness. Higher levels of pre-visit mistrust and patient

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suspicion were also associated with lower post-visit trust in oncologists, and greater anticipation of difficulty among patients in adhering to oncologists’ recommendations for treatments. Oncologists, likewise, had less positive expectations for treatment among patients with high levels of pre-visit suspicion [17]. Similar to Penner, Sutton et al. found that among Black women with breast cancer medical mistrust was significantly associated with less patient-reported satisfaction with oncologists technical ability [14]. Specifically, in this study, women with public insurance and less than a bachelor’s degree reported greater mistrust, suspicion, and perceived discrimination. These findings are similar to other studies showing an association between socioeconomic status and medical mistrust. Medical mistrust not only is associated with less satisfaction and negative perceptions of oncologists, but also influences overall health status and mental and emotional health. For example, a study of 268 men with localized prostate cancer found that Hispanic and Black men reported greater medical mistrust than White men. This medical mistrust was significantly associated with poorer physical and emotional well-being among Hispanic and Black men [18]. Another individual-level factor that influences trust in the cancer care delivery system and the cancer care team is health literacy. Health literacy is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions,” [19]. Health literacy is independent of educational attainment—highly educated patients may experience just as much difficulty understanding health information such as their cancer diagnosis, cancer treatments, and self-management approaches than less educated patients [20]. Consistently in the literature low health literacy is associated with many facets of health, such as low health-related quality of life (HRQL), avoidance of health care, fatalistic attitudes about cancer, low understanding of the purpose of cancer screenings, less information-seeking behavior, poor treatment outcomes, acute care use after a cancer diagnosis [20], and medical mistrust [21]. Furthermore, low health literacy may also influence patients’ perceptions of and trust in their oncologists and their perceptions of and experiences with discrimination in their health system interactions [22]. It is not surprising, therefore, that studies have shown that higher levels of health literacy promote trust in the patient-doctor therapeutic relationship [23]. Personal religious and/or cultural values and preferences are also barriers and facilitators of trust in cancer care delivery systems and cancer care teams. For example, religious and cultural values that conflict with western medical practices, such as avoidance of blood products, may limit cancer treatment options and adherence. In some instances, advanced planning for “bloodless” treatment protocols may be possible, though the outcomes may be more uncertain compared to traditional surgical and treatment approaches [24]. Preferences for treatments, such as alternative medicine approaches in lieu of, or in combination with standard care may also erode patient-care team therapeutic relationships and undermine care.

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Interpersonal Factors When cancer care teams approach patient religious and/or cultural beliefs and personal preferences with cultural competence and respect, cancer care teams may find ample opportunities to enhance patient education, establish shared goals for care, and foster trust in the therapeutic relationship. In a case study, the American Medical Association Journal of Ethics presented an example of how clinicians can best respond to patient requests of praying together [25]. Naturally, this type of request can be challenging, particularly if the clinician and patient are of different faiths. Often these requests, if not approached delicately and respectfully, can diminish trust between the patient and their cancer care team. Patients may feel that their beliefs are ignored, or worse, that their autonomy and ability to choose their treatment options are not recognized and providers may feel disrespected. Empathic listening and validation of patients’ concerns can strengthen trust in the patient-­ provider relationship. Cultural competence must extend also to recognizing the unique needs of other vulnerable populations, such as sexual and gender minority patients, in the oncology care setting. Limited clinician understanding of the complex way that treatment may impact these groups can be a barrier to both communication and trust [26, 27]. Lack of national policies for how to respectfully deliver equitable cancer care among these groups highlight the extent of this barrier [28]. Language is another common interpersonal factor that influences trust in health systems. Lack of interpreter services or reliance on family members or staff members who are not trained professionally to serve as medical interpreters are known barriers to establishment and maintenance of trust [29]. Having professional interpreter and translation services, multilingual staff, and health education materials available in multiple languages can facilitate building trust and rapport with patients.

Community and Organizational Level Factors Complex health systems and disjointed care are common barriers to patient trust and quality care. Systems-level barriers, such as oncology workforce shortages and limited provider time are common barriers to building trust. Sterponi et al. found that the average first oncology visit time was 23 min [30]. During this time oncologists must introduce themselves, confirm patient history and health status, conduct the cancer diagnostic assessment, make treatment recommendations, outline next steps, and answer patient questions [30]. In these brief encounters patients’ perceptions of feeling rushed and possibly unheard may inhibit the fostering of interpersonal connections and establishment of trust. The use of ancillary personnel and programs can help to overcome systems level barriers in the establishment of trust. For example, trained patient navigators and community health workers can facilitate high quality cancer care access [31, 32] in an otherwise fragmented system. Cancer support groups also facilitate trust. They can enhance the patient experience and their treatment adherence [33].

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In these support groups, patients have a safe space to ask questions that they might otherwise feel uncomfortable raising. Although many cancer clinics employ patient navigators and facilitate connection of patients to local support groups, these aspects of care delivery are considered ancillary and not necessary and are not available ubiquitously. When available, however, challenges remain in ensuring equitable benefit from these services. For example, support groups may not be available in languages other than English and this lack of availability for patient populations with language barriers may perpetuate challenges in the establishment of trust among these populations. At the organizational level, lack of diversity among members of the oncology care team can be a barrier to optimal patient trust. As noted by Owoyemi and Aakhus, underrepresentation of minority groups in oncology “may contribute to disparities in cancer research, clinical care, and patient outcomes [4].” Eggly et al. found that communication was poorer at visits that were racially discordant (Black patient and White provider), that Black patients asked fewer questions, that these visits were shorter, and physicians delivered less information [34]. While communication strategies can and should be taught to physicians to improve interactions with diverse patients, a major goal of current diversity and inclusion efforts includes increasing oncology workforce diversity to establish trust among minority communities. When patients receive care from team members who look like them, who come from their community, who share cultural heritage and language, it can help to foster trust and break down medical mistrust. During the COVID-19 pandemic, patients with cancer have been among the most vulnerable groups. Lack of reliable, timely, and easy-to-understand public health messaging related to how to navigate care and daily life as a patient with cancer during this pandemic, as well as constantly shifting national recommendations for precautions and safety, have understandably eroded trust in our complex health system. A recent study found that 60% of patients believe their oncologists to be a trustworthy source for COVID-related information, yet 54% felt comfortable discussing their concerns with their oncologist [35]. This was despite high rates of treatment delays and self-reported concerns about how to prevent infection and how treatment delays could impact outcomes [35].

Policy Level Factors Policies are a crux in establishment of trust. For example, policies that support improved access to care, health care coverage, elimination of prior authorization, and reimbursement for patient-centered services such as patient navigation facilitate trust. Several pieces of United States-based legislation including the Affordable Care Act which provide health care coverage for cancer screening services and routine annual physical exams foster trust. Other legislation such as California Bill SB535 which prohibits prior authorization for Cancer Biomarker Testing improve the likelihood that oncologists will deliver evidence-based care and enables the

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establishment of trust. The American College of Surgeons Commission on Cancer’s requirement that every accredited organization have a patient navigator program [32] is another such example of policies that enable trust. The financial toxicity of cancer treatment not only inhibits care access but also the establishment of trust. In a study of Latina breast cancer survivors, Chelibe et al. highlight the importance of culturally competent community-based organizations as a facilitator to financial planning and assistance options [36]. They also highlight restrictive eligibility criteria of financial assistance programs and the lack of coverage for post-treatment survivors as areas ripe for policy change [36]. Financial misalignments and unintended consequences of programs and policies present major barriers to the establishment of trust with patients. One recent example is exploitation of the 340B program, a program which allows covered entities such as certain hospitals and federal grantees to obtain prescription drugs including chemotherapeutics at significantly lower cost. It is estimated that the savings generated from 340B programs resulted in 25–50% cost savings in drug costs for eligible hospitals. While the intent of the 340B program was to support clinicians and health systems who provide care for low-income uninsured patients, the program does not limit use of the revenue generated to these patients only, rather the savings in drug costs can be applied for all populations served by the eligible health systems. In recent, years, given increased mergers, consolidations, and affiliations of outpatient cancer clinics with hospital conglomerates, the 340B program has rapidly expanded. One major concern about the growth of the program has been that these programs can create perverse incentives for 340B hospitals and affiliated clinics to change practice patterns without benefitting the patients for whom the program was intended. For example, some practices have incentives to increase 340B drug administration in hospital-based outpatient departments rather than physicians’ outpatient offices to reap the benefits of the savings from the 340B program [37]. This site of care shift in administration of chemotherapy, for example, from outpatient clinics to hospital-­ based outpatient departments have unintendedly increased cancer care spending given that hospital-based administration of chemotherapeutics is significantly more costly than administration in physician outpatient offices [38]. Traditional payment models for health care services are another area of financial misalignment with unintended downstream consequences that erode trust. In traditional fee-for-service payment models, acute care use generates revenue for hospital and health systems. Yet, approaches that avert acute care use often lack adequate comparable reimbursement. This is especially true in end-of-life care delivery. Over 70% of patients are not aware of their prognosis and the intent for their cancer-­ related treatments [39]. Many also suffer from undertreated symptoms that result in unnecessary acute care use. To date, discussions between cancer care teams and patients regarding patient preferences and prognosis are not held due to a variety of multi-level barriers such as limited clinician time, clinician hesitancy to engage in these discussions, and significantly limited financial reimbursement. Health systems are often not motivated to initiate programs that can overcome these barriers as they are not only costly but also time-intensive and, unfortunately, do not generate revenue, but in traditional fee-for-service models, reduce the revenue generated

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from acute care use. Because preferences for care and realistic expectations of intent of treatment are not discussed early in the disease course and frequently, at the endof-life, patients may worry they are missing out on life-extending treatment [35]. These unintended consequences and financial misalignments have resulted in the redesign of payment models for cancer care that align incentives. Recent models of care, such as the Centers for Medicare and Medicaid Services Oncology Care Model, financially align payments to health systems with high quality of care and performance measures such as averting acute care use in the last 30 days of life and averting chemotherapy in the last 14 days of life. These models have begun to promulgate health systems across the nation to engage in proactive approaches to ensure that patients preferences and prognosis are discussed early in the disease course in hopes to avoid aggressive, costly treatments that do not extend life but worsen patients’ experiences and quality of life [40]. Finally, historically policies have not supported or encouraged the inclusion of diverse racial/ethnic groups, women, or sexual minority groups in clinical research studies. For example, until passage of the Clinical Treatment Act which took effect in January 2022, Medicaid routinely did not cover routine care costs for patients with life-threatening illnesses such as cancer who were enrolled in clinical trials. This poses a barrier to understanding the needs of communities who already suffer from significant disparities in clinical cancer outcomes, how specific treatments or programs impact them, and further inhibit accurate treatment outcome projections, all of which are essential to trusting relationships with oncology care teams. In current clinical trials, far too few include patient-reported outcome (PRO) measures, which is defined as an outcome directly reported by the patient and pertains to a patients’ health, quality of life, or functional status as associated with health care or treatment [41, 42]. A study by de Rooij et al. found that patients who did not participate in patient-reported outcomes studies had lower survival compared to those who do [43]. Thus, incorporating patient-reported outcome measures into care and clinical trials aligns project goals to focus on outcomes that are meaningful to patients, clinically beneficial, and can foster trust.

Factors Impacting Trust: global perspective While many of the factors described in each level of the socioecological model above are applicable across societies globally, the impact of these levels vary depending on local and regional context. More specifically, certain levels may be more influential than others. For further edification on this important topic, we recommend the following literature: • International Atomic Energy Agency. (2011). Inequity in Cancer Care: A Global Perspective. Internat. Atomic Energy Agency. • Sirohi, B., Chalkidou, K., Pramesh, C.  S., Anderson, B.  O., Loeher, P., El Dewachi, O., ... & Sullivan, R. (2018). Developing institutions for cancer care in

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low-­income and middle-income countries: from cancer units to comprehensive cancer centres. The lancet oncology, 19(8), e395–e406. • Baumann, M., Ebert, N., Kurth, I., Bacchus, C., & Overgaard, J. (2020). What will radiation oncology look like in 2050? A look at a changing professional landscape in Europe and beyond. Molecular oncology, 14(7), 1577–1585. To engender trust, cancer health systems globally must recognize and value patient perceptions, beliefs, and practices and the subjective experience and cultural beliefs pertinent to the illness experience. It is well understood that as nations become more developed, cancer incidence tends to rise as more people are living longer and are less impacted by infectious disease and vaccine-preventable illness. Yet prevention, early detection [44], and treatment availability may not keep pace. For example, the International Atomic Energy Agency’s Inequity in Cancer Care: A Global Perspective report, citing Kilara (2004), states “developing countries command only 5–10% of the global resources for cancer treatment but have to cope with more than 50% of the world’s patients [45].” The report goes on to explain that 30 countries lack even a single radiation therapy machine [45]. When health systems are limited in the treatments they can provide when cancer is detected, patient trust in the system diminishes. Availability of public-private partnerships [46], charitable aid, and other programs [47] that help to bolster care in low and middle income countries may help to overcome the lack of resources and capacity and engender trust. However, as health systems expand their cancer-directed therapeutics, services, programs, clinical teams must carefully consider how best to introduce these novel care options given that many patients may initially be reluctant and hesitant to accept such care. Translational science toolkits and frameworks such as diffusion of innovations may assist health systems in the adoption of such novel approaches among patients and clinicians alike. Globally, cancer care delivery is quite varied. In the United States, for example, financial structures and organizations are quite different from those in other nations. In addition, there are intrinsic cultural distinctions that are meaningful to members of a given society that must be considered. For example, in societies that have greater tendencies toward collectivism rather than individualism, strategies to engage and activate patients in care, such as communication approaches, should be tailored based on the larger cultural context as well as the patients’ beliefs and preferences [48]. Other examples of intrinsic cultural differences include the recognition of more traditional complementary and integrative medicine (TCIM) as essential to health in many societies and cultures. While it is well-known that TCIM is the foundation of treatment strategies among many indigenous, first nations, and Aboriginal peoples, Mao et al. note these approaches may be the primary form of therapy that is accepted or even available to many individuals in some low- and middle-income countries, like Brazil, rural India, and Chile [49]. In some higher income countries, TCIM use is quite common as an approach that is integrated into the treatment of patients with cancer. For example, estimates of TCIM use among adult patients with cancer or cancer survivors is commonly about 50% in nations such as Canada [50]. In Australia 10 major oncology centers integrate TCIM offerings [50]. With awareness of these intrinsic cultural differences and patient

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preferences, providers can tailor their approaches to foster trust and patient activation in cancer care in diverse settings.

Evidence-Based Best Practices Culturally Tailored Care and Resources to Improve Trust Many studies have demonstrated the benefits associated with using culturally tailored approaches and resources to foster trust. Using a culturally competent approach signals to patients that their values, beliefs, and concerns are recognized and considered as part of the care process. Cultural competence training and implicit bias and communication training can better prepare professionals to meet the needs of diverse communities facing the many barriers discussed at the start of this chapter. Oncology-specific training has been found to be effective in studies such as the TEAM cultural competency training [51], the Cultural Complications Curriculum for surgical oncology [52], and an Lesbian, Gay, Bisexual, and Transgender (LGBT)-specific course for oncology nurses and clinicians [26]. Additionally, training on how to lead culturally sensitive conversations about palliative care and advance care planning are essential [53, 54]. Another way to build-in cultural sensitivity is to involve patient and local, community-­ based stakeholders in the design of health education and promotion materials, interventions, clinical trials, and care processes. Using the REAIM framework, for example, is one approach to engage stakeholders in discussions about adaptability and sustainability of various aspects of interventions to improve care [55, 56]. Involvement of community advisory boards that can actively participate in project development and dissemination of programs and studies as well as provide feedback on current care processes and their applicability to the wider community is another example. Many culturally tailored interventions to increase cancer screening and prevention have been developed and are effective in bridging gaps in patient knowledge and attitudes of recommended health prevention behaviors. For example, Hoffman et al. used a culturally-tailored decision aid and edutainment video about colorectal cancer screening to significantly increase African American men’s knowledge about colorectal cancer screening, improve self-advocacy and reduce decisional conflict [57]. Alkhasawneh et al. tested a culturally relevant breast cancer health education program based on the Enabling Systems Raising Awareness model with 53 Omani women and found that the program significant increase in overall mean knowledge scores (P