Palliative Treatment for Advanced Cancer Patients: Can Hope Be a Right? 3031307755, 9783031307751

Table of contents :
Foreword
Preface
Acknowledgments
Contents
About the Author
Chapter 1: Introduction
1.1 Cancer Drugs: Are We Really Talking About Health?
1.2 What to Expect?
References
Chapter 2: What Is a Right to Health?
2.1 Health
2.2 Right to Health: Can We Have What We Want?
2.2.1 What Right to Health?
2.2.2 Construction of the Right
2.2.3 Limits of Subjective Claim to a Right
References
Chapter 3: A Right to Health or a Right to Hope?
3.1 The Right to Health Should Be the Foundation of a Medical Prescription
3.2 Medical Futility and the Obligation to Combat Therapeutic Obstinacy
3.3 Patients with Advanced Cancer as an Ideal Parameter for Understanding the Dichotomy Between Health and Hope
3.4 Hope
3.4.1 Marcelian Hope
3.5 Is there a Right to Hope?
3.5.1 Opposed Directions
3.5.2 What Hope?
3.5.3 Can Hope Justify Normative Content?
3.6 Legalized Hope
References
Chapter 4: Dignity and Autonomy: No Place for Illusion
4.1 Dignity
4.2 Autonomy
4.2.1 Free and Informed Consent as the Main Corollary of Autonomy
4.2.2 The Era of the Shared Decision
4.3 The Impact of Information on Patients at the End of Life
References
Chapter 5: Difficult Conversations
5.1 Qualitative Research Carried Out in Brazil and Germany
5.1.1 No Time to Err: My Present for a Future
5.1.2 How Do the Misconceptions Happen?
5.1.3 Beyond the Cure: While There Is Chemotherapy, There Is Life?
References
Chapter 6: Palliative Care: Life with Dignity: Until Its End
6.1 Life with Dignity
6.1.1 Immediate Dignity
6.2 Palliative Care
6.2.1 Palliative Care as a Consecration of the Right to Health – and Hope
6.2.2 Palliative Care Offer Around the World
6.3 What Is the Way Forward for a Culture of Care?
References
Chapter 7: It’s Time to Talk About Dying
7.1 The Limits of Medicine
7.2 Seeing the People Behind the Patients
7.3 No Other Way to Live
7.3.1 Dying Is Part of Living
7.3.2 It’s Time to Talk About Cancer. It’s Time to Talk About Dying
References
Annexes
Annex I: Personal Interview with Oncologist Mathias Bertram, Former Coordinator of the Oncology Center – Albertinenkrankenhaus Hamburg/Germany, on April 20, 2018
Annex II: Personal Interview with Retired Physician and Researcher Peter Wise – Roquefort Les Pins/France, on June 5, 2018
Index

Citation preview

Cynthia Pereira de Araújo

Palliative Treatment for Advanced Cancer Patients Can Hope Be a Right?

Palliative Treatment for Advanced Cancer Patients

Cynthia Pereira de Araújo

Palliative Treatment for Advanced Cancer Patients Can Hope Be a Right?

Cynthia Pereira de Araújo Brazilian Federal Attorney General’s Office Belo Horizonte, Minas Gerais, Brazil

ISBN 978-3-031-30775-1    ISBN 978-3-031-30776-8 (eBook) https://doi.org/10.1007/978-3-031-30776-8 © The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 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 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

To Beatriz and Daniel, who helped bring this book into existence by giving me the most important thing we have in life: their time.

Foreword

We live in hope and expectation  – that medical science will continue to provide ever-increasing quality and duration of life. Yet we consistently ignore that this sword is two-edged: on one side the benefit and on the other the complications and side-effects of even the most minor medical intervention. And so it is with the cancer drugs that may not only prolong and save lives – but also damage and lose them through adverse effects. How do we face an ever-trusting public, also largely unaware of the commercial pressures involved – from the pharmaceutical industry, from approval of government bodies that benefit indirectly through taxation of that industry – even from doctors themselves whose incentives to treat are not always the most honorable? Surgeons like to operate, physicians like to prescribe: that is in the nature of things. The concept of “wanting to help” can easily lose its meaning. The public needs to understand the limits of our treatment options, and some disillusionment is inevitable. Physicians must also learn when to stop. Nature has its own agenda and patients have their attitudes to “life”: both must be respected. It is this context that this fine documentation by Cynthia Pereira de Araujo needs to be read and highly regarded: a factually based analysis which not only answers questions but also poses further ones that are not so easily answered – a real challenge to society. Promenada 27, 7018 Films, Waldhaus, Switzerland

Peter H. Wise

vii

Preface

Although having my suspicions, I was unaware of the evidence demonstrating that many patients with advanced cancer do not understand the purpose of the chemotherapies they undergo. It was routine in my work as a Federal State Attorney, dealing with health claims, to see patients who demanded a specific treatment in the hope of curing their cancers, but who subsequently got worse and died shortly after starting such courses. Was it really health we were talking about? Or was it actually hope? Completed in early 2019, this was the central question addressed in my doctorate. Realizing that the Brazilian judicial scenario was just a micro example of a much broader reality, based on the literature and complementary doctoral research done in Germany, I resolved to publish the results of my PhD research in English. In order to meet the needs of an international audience, I completely revised the original thesis, which had already been published in Portuguese, included new chapters, and contextualized the few references to the Brazilian ethical-legal context that is maintained in the present text. A further inclusion is a whole chapter about the qualitative research carried out on patients in Brazil and Germany. I believe that this is a book with an unprecedented approach to the mistaken expectations of cancer patients and that addresses the consequent questions of autonomy and dignity. As such, I sincerely hope that its publication will be useful for, still incipient, end-of-life discussions and contribute to strengthening the idea that universal access to palliative care should be seen as a medical necessity – and not an occasional eventuality depending on the training of the health team and the wishes of patients and their families. Belo Horizonte, Minas Gerais, Brazil

Cynthia Pereira de Araújo

ix

Acknowledgments

This book is the result of a process that began more than 10  years ago, when I became a Federal Attorney. I could never have developed the research that led to this book if it had not been for my work as one of the people responsible for defending the Brazilian State in health lawsuits. I therefore need to thank the Brazilian Attorney General’s Office (Advocacia-­ Geral da União), the Brazilian Ministry of Health, and all those working in these two places as they helped me to better understand cancer and the right to health. The international cooperation program PROBRAL/CAPES/DAAD made possible my doctoral stay at the University of Vechta/Germany, under the guidance of Professor Jean-Christophe Merle, and with the support of the Coordination for the Improvement of Higher Level Personnel (CAPES), Brazil – Funding Code 001. The first person who helped me see what I later developed as the idea of “a right to hope” was Dr. José Luiz Nogueira, a friend whom I will never be able to thank enough. He then introduced me to Dr. Munir Murad Jr., without whom I would never have been able to follow the path that brought me here. When I first read the article Cancer drugs, survival and ethics, by the researcher and former physician Peter Wise, in BMJ, I knew I had to talk to him. He not only accepted my request for an interview, but also welcomed me into his home and wrote the foreword for my books. He is one of the main characters on my journey. I thank my friends Alexandre Ribas and Sarah Ananda for all the encouragement, and my German teachers and friends Alexa Diekhaus and Elke von der Heyde (in memoriam). I am very grateful to Dr. Mathias Bertram, who made my interviews in Germany possible and has always been so kind about my research projects. I dived headlong into research that is deemed undesirable by most people because it deals with illness and death. I had plenty of company during the voyages on the sea of anguish and fear that I faced, especially my mother, Ana Aurora, who literally embarked with me, and also my husband, Daniel, who took care of me and our life on his own so that I could dedicate myself entirely to this work.

xi

xii

Acknowledgments

One year and eight months ago, our daughter, Beatriz, was born. Every single second I needed to write this book belonged to her and I thank her for kindly donating to me. I thank my father, João Araújo, for making me believe long ago that my visual impairment would not define me. And my sister, Marcella, for her love and support at all times, even if the subject matter is so difficult for her. I thank my mentor and friend, Alexandre Trivisonno, for guiding me in so many projects, since college. A lot of strong and wonderful women helped me believe that my research was worth sharing with the world. Unable to mention everyone, I have chosen Luciana Dadalto, Camila Appel, and Jéssica Moreira. I would like to make special mention of my friends Sandra Magalhães, Tatiana Porto, and Diogo Sasdelli to represent the many friends who accompanied me on this journey with such affection and encouragement. I am also thankful for the assistance of the brilliant researcher and Professor Ana Cláudia Mesquita Garcia, who helped me so much with the reference lists. Finally, I would like to thank the Editor, Bruno Fiuza, who believed in this project since the beginning, and Mr. Tony O’Sullivan and John Warrener, who helped with the translations. Lastly, and most importantly, there are no words to pay tribute to every patient and family member who told me their story. But, every time I share the results of this research, I promise to try to honor the time you shared with me. I know it was worth a lifetime.

Contents

1

Introduction����������������������������������������������������������������������������������������������    1 1.1 Cancer Drugs: Are We Really Talking About Health?����������������������    3 1.2 What to Expect?��������������������������������������������������������������������������������    5 References��������������������������������������������������������������������������������������������������    6

2

 What Is a Right to Health? ��������������������������������������������������������������������    9 2.1 Health������������������������������������������������������������������������������������������������   10 2.2 Right to Health: Can We Have What We Want? ������������������������������   12 2.2.1 What Right to Health?����������������������������������������������������������   12 2.2.2 Construction of the Right������������������������������������������������������   14 2.2.3 Limits of Subjective Claim to a Right����������������������������������   17 References��������������������������������������������������������������������������������������������������   18

3

 Right to Health or a Right to Hope?��������������������������������������������������   19 A 3.1 The Right to Health Should Be the Foundation of a Medical Prescription������������������������������������������������������������������   20 3.2 Medical Futility and the Obligation to Combat Therapeutic Obstinacy������������������������������������������������������������������������������������������   21 3.3 Patients with Advanced Cancer as an Ideal Parameter for Understanding the Dichotomy Between Health and Hope ��������   25 3.4 Hope��������������������������������������������������������������������������������������������������   27 3.4.1 Marcelian Hope��������������������������������������������������������������������   28 3.5 Is there a Right to Hope?������������������������������������������������������������������   31 3.5.1 Opposed Directions��������������������������������������������������������������   34 3.5.2 What Hope?��������������������������������������������������������������������������   37 3.5.3 Can Hope Justify Normative Content? ��������������������������������   40 3.6 Legalized Hope ��������������������������������������������������������������������������������   43 References��������������������������������������������������������������������������������������������������   47

xiii

xiv

Contents

4

 Dignity and Autonomy: No Place for Illusion����������������������������������������   51 4.1 Dignity����������������������������������������������������������������������������������������������   51 4.2 Autonomy ����������������������������������������������������������������������������������������   54 4.2.1 Free and Informed Consent as the Main Corollary of Autonomy ������������������������������������   56 4.2.2 The Era of the Shared Decision��������������������������������������������   60 4.3 The Impact of Information on Patients at the End of Life����������������   61 References��������������������������������������������������������������������������������������������������   63

5

Difficult Conversations����������������������������������������������������������������������������   65 5.1 Qualitative Research Carried Out in Brazil and Germany����������������   66 5.1.1 No Time to Err: My Present for a Future������������������������������   67 5.1.2 How Do the Misconceptions Happen?���������������������������������   70 5.1.3 Beyond the Cure: While There Is Chemotherapy, There Is Life?������������������������������������������������������������������������   72 References��������������������������������������������������������������������������������������������������   74

6

 Palliative Care: Life with Dignity: Until Its End����������������������������������   77 6.1 Life with Dignity������������������������������������������������������������������������������   78 6.1.1 Immediate Dignity����������������������������������������������������������������   79 6.2 Palliative Care ����������������������������������������������������������������������������������   80 6.2.1 Palliative Care as a Consecration of the Right to Health – and Hope����������������������������������������   81 6.2.2 Palliative Care Offer Around the World��������������������������������   83 6.3 What Is the Way Forward for a Culture of Care? ����������������������������   84 References��������������������������������������������������������������������������������������������������   89

7

It’s Time to Talk About Dying����������������������������������������������������������������   93 7.1 The Limits of Medicine��������������������������������������������������������������������   93 7.2 Seeing the People Behind the Patients����������������������������������������������   94 7.3 No Other Way to Live ����������������������������������������������������������������������   96 7.3.1 Dying Is Part of Living ��������������������������������������������������������   97 7.3.2 It’s Time to Talk About Cancer. It’s Time to Talk About Dying����������������������������������������������   98 References��������������������������������������������������������������������������������������������������  100

Annexes ������������������������������������������������������������������������������������������������������������  103 Index������������������������������������������������������������������������������������������������������������������  113

About the Author

Cynthia  Pereira  de Araújo  is a Federal Attorney, member of the Brazilian Attorney General’s Office since 2009, and has coordinated litigation in the area of health in the State of Minas Gerais (2014–2015). She holds a Master’s and Doctorate in Law from PUC-Minas, with a sandwich doctorate from the University of Vechta, Germany (Probral/Capes-Daad scholarship). Her thesis, entitled Existe direito à esperança? Saúde no contexto do câncer e fim de vida (Is there a right to hope? Health in the context of cancer and end of life), was the work nominated by the Law School of PUC-Minas for the Capes Thesis Award 2020. In 2021, she was invited to present her research at the 9th International Oncoclínicas Symposium and Dana Farber Cancer Institute. She is a lecturer and author of articles and books on issues in health law and bioethics, the most recently published being: “The expectations of metastatic cancer patients regarding palliative chemotherapy: A Brazilian-German qualitative study” (2023, Palliative and Supportive Care, Cambridge University); “On the (in)equality of death: in search of autonomy and dignity at the end of life” (2022, Revista Pensar  – Unifor, v. 27, n. 2), “Obstinação terapêutica: um não direito” (2022, In: Cuidados Paliativos: aspectos jurídicos, org. Luciana Dadalto, 2d, Foco); “Existe direito à esperança?” (2022, slowmedicine.com.br). She is the author of the Folha de São Paulo newspaper blog Morte sem tabu (Death without taboo), along with journalists Camila Appel and Jéssica Moreira. She is married to Daniel Negrão, with whom she has a 1-year-old daughter, Beatriz.

xv

Chapter 1

Introduction

In 1994, the physician and researcher Sherwin Nuland dedicated two of the 12 chapters of his important work “How we die” [1] to addressing cancer, the “mortal illness that will take the great majority of us” [1, p. 18]. In 1926, cancer had already become the second most common killer in the United States [2, p. 24] and is now on its way to number one in the world [3]. Nuland says that “knowing no rules, cancer is amoral. Knowing no purpose other than to destroy life, cancer is immoral” [1, p. 210]. What we call cancer represents a wide variety of diseases, which share the fundamental characteristic of abnormal cell growth [4] and have different prognoses and outcomes. It is a set of diseases related especially to longevity. The failure in the idea of a “cancer cure,” albeit also due to the different types of the disease – in addition to the differences between genes and biochemical mechanisms, and among the patients themselves – is mainly because this set is closely linked to the aging process [5]. Therefore, the gradually increasing number of cancer cases is not only a long way from being a problem that medical science is about to solve, it is a problem that always tends to get worse, because more people will be alive for longer and longer [5]. When I interviewed the writer and pianist Igor Reyner for a Brazilian newspaper column I write on, Morte sem tabu (Death without taboo), for Folha de São Paulo [6], he told me something very striking about his experience as a cancer patient: it is never just about the disease, because you cannot isolate the disease from the experience you have of it; there is a dimension that is most certainly disturbing, which is, beyond the disease, its symptoms and treatment, the idea. The idea of having cancer. The notion of cancer as affliction only emerged in the twentieth century, taking the place of tuberculosis as something ominous, abominable, which depleted vitality and in which dying defines the disease more than death [2, p. 37].

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. P. d. Araújo, Palliative Treatment for Advanced Cancer Patients, https://doi.org/10.1007/978-3-031-30776-8_1

1

2

1 Introduction

For a long time, cancer was the “disease that was spoken about in whispers and never publicly” [2, p. 26]. Mukherjee relates that in the early 1950s, a breast cancer survivor had called the New York Times to publish an ad for a support group for women with the same disease. “I’m sorry, Ms. Rosenow, but the Times does not print the word breast, nor the word cancer, on its pages,” was the response she received [2, p. 26]. We know that many people still hide their cancer diagnosis from their family and friends. We know that many family members still ask doctors not to tell the patients themselves about the diagnosis. Research in the United Kingdom has shown that it is common for South Asian women to hide their symptoms, seek medical attention only belatedly, or begin treatment without the support or knowledge of family or friends. Many refuse chemotherapy for fear of losing their hair and revealing their disease [7]. Cancer represents the second leading cause of death worldwide, accounting for one in every six deaths, as per data from 2018. According to data on the American population, approximately 40% of people will be diagnosed with cancer at some point in their lives [8]. In some countries, cancer is on its way to affecting one person in every four, three, or even two and is becoming an inevitability: “the question in this case is not whether we will have an encounter with this immortal disease in our lifetime, but when” [2, p. 460]. According to data currently available, in Europe, cancer cases are set to increase by 24% by 2035, making it the leading cause of death on the continent [9]. The timing of this encounter is crucial for the patient. Although many types of cancer are potentially curable, especially if detected early, most patients will die for reasons directly or indirectly related to their cancers precisely because they are mostly diagnosed late. In 2011, Murad Júnior pointed out that, “according to the World Health Organization, there are an estimated 10 million new cases of cancer annually,” and “despite major therapeutic developments, two-thirds of these patients die in less than a year after diagnosis,” with developing countries – such as Brazil – accounting for approximately 70% of these deaths [10]. The most prevalent cancers in the world are lung, breast, colon/rectum, and prostate. Lung cancer is also the number 1 killer of men and number 3 among women, and in only 16% of cases is the diagnosis made at an early stage [11]. In Brazil, breast cancer is the leading cause of cancer death in the female population [12], being diagnosed at an advanced stage in more than 70% of cases [13]. As per a survey released in 2019 by the American organization, Colorectal Cancer Alliance, 71% of the patients with recent onset colorectal cancer interviewed had stage III or IV diagnoses [14]. According to data from the Brazilian Ministry of Health, prostate cancer is the most common type of cancer among men in Brazil, killing one man every 38 min [15].

1.1  Cancer Drugs: Are We Really Talking About Health?

3

1.1 Cancer Drugs: Are We Really Talking About Health? In 2016, researcher Peter Wise, MD, and retired professor from Charing Cross Hospital the Imperial College School of Medicine, reviewed the literature on cancer drugs for patients with metastatic cancer and published the article “Cancer drugs, survival, and ethics” in the BMJ [16], one of the most respected medical journals in the world, and was also recommended in the Editorial by the editor-in-chief at the time, Fiona Godlee. In it, Wise demonstrated the very low effectiveness of drugs in the treatment of advanced cancers (overall survival of up to 3 months), including the most prevalent tumors in the world and the drugs approved by the major agencies up to 2014. Although this scenario may have changed somewhat in recent years, especially with the promise of immunotherapy, it is safe to say at this point that the vast majority of patients will not benefit from the new Technologies [17], even in the most optimistic of scenarios [18], which also pose major limitations due to the incidence and severity of side effects. Regardless of how prevalent the negative outcomes of cancer drugs are, most patients will see only marginal benefits from them, if any. However, quantitative studies in medicine have shown that many patients with advanced cancer and poor prognosis do not understand the effects that, according to the available evidence, can be expected from palliative chemotherapy. Because they do not understand the effective potential of palliative oncologic treatments, whose benefits are often  – when they exist  – only marginal, patients without a cure or significant life expectancy prognosis minimize treatment complications while finding it encouraging that something is being done. They hope to be cured or to live a long life for as long as they are being treated. This raises ethical and legal questions on what can really be considered a right to health in the access to health technologies by these patients. First of all, if someone consents to a treatment believing that it can do far more than it actually can – prolong life by a month while expecting a cure – this can be considered therapeutic obstinacy. And above all, there is no consent when there is no understanding. As Nuland [1, p. 221] says, there has arisen the conviction among doctors – more than a mere conviction, it is nowadays felt by many to be a responsibility – that should error occur in the treatment of a patient, it must always be on the side of doing more rather than less. Doing more is likely to serve the doctor’s needs rather than the patients. The very success of his esoteric therapeutics too often leads the physician to believe he can do what is beyond his doing and save those who, left to their own unhindered judgement, would choose not to be subjected to his saving.

A study by Wright and other authors showed that patients in palliative chemotherapy were less likely to understand the terminality of their disease or to discuss end-of-life issues with the physician, compared to those who were not in treatment [19]. The authors clarified that it was already known that many patients with metastatic cancer, although receiving chemotherapy in the final months of life, are not

4

1 Introduction

informed about its effective potential in relation to the disease and, especially, the effectively possible survival [19]. The low benefit of the proposed treatments combined with the lack of autonomy of the patient who undergoes them without actually consenting, since he or she does not understand their purpose, is enough to make one question if it is not something other than the right to health that is being emphasized in this scenario, so frequent in oncology. This is the context that allows the supposition of another possible right that might be taking its place: a right to hope. The Brazilian situation was the main inspiration for this idea, due to the broad legal concession of all and any health technology based only on medical prescriptions that explain little about the effective benefits to be expected for patients, on the mere grounds that these are necessary treatments for their lives. However, this does not mean that the relations that lead to the counterpoint between right and hope in the context of advanced cancer patients’ expectations are particular to Brazil, quite the reverse. In fact, the assumption that futile measures toward the desired goal can be found in an ethical-legal health context is not dependent on its analysis in the legal context, because what is declared by the judge is an affirmation of necessity already stated by the physician. Hence, the Brazilian judicial context served only as a showcase that enabled us to identify a reality that is repeated all over the world: patients with no prognosis of cure or long survival undergo treatments that they believe can cure them or guarantee them long-term survival, and this is perceived as the right to health. This right, however, cannot include desires contrary to scientific evidence, much less can it be separated from the concept of subject autonomy. Leo Pessini [20], one of the most important Brazilian bioethicists, states that: 1. The patient‘s autonomy consists firstly in the right to reject treatment and then to choose from the medically justifiable options. Responsible practice excludes the application of harmful, ineffective and useless treatments, even when there is the religiously motivated belief in a miracle. 2. Healthcare professionals should not provide or suggest useless treatments as medical options. Ineffective and useless treatments should be avoided or discontinued. 3. A useless treatment is one that is incapable of producing the results for which the intervention was initiated, that is, it does not benefit the patient, even if it may produce a temporary psychological effect. For example, life support technology can help the functioning of the organs, but it does not benefit the patient with irreversible and severe encephalopathy. A useless treatment will not cure or relieve the patient and will not allow him/her to recover his/her functions. […];

The idea of a right to hope in that regard seems never to have been developed. In 2014, a Google search for the expressions “direito à esperança” (Portuguese), “right to hope” and Recht auf Hoffnung (German) returned no meaningful results. Since the absence of a general and abstract right to hope in legal systems is manifest, its normative consecration would require it to be considered an implicitly affirmative fundamental human right. Its most probable source would be some sense of human dignity.

1.2  What to Expect?

5

It could be argued, however, that this way of viewing the subject places the patient above the human being. In fact, it appears to be believed that it is only the patient who has dignity and not the person regardless of the illness. This dignity thus becomes the supposed necessity for submission to a prescribed treatment, whatever it entails for this person and wherever it leads him or her. The legal and ethical aspects of these issues will be discussed in depth in Chap. 3 and 4, after an analysis concerning the limits of the right to health in Chap. 2.

1.2 What to Expect? As previously stated, quantitative studies have shown that many patients with advanced cancer do not understand the effects that, according to the available evidence, can be expected from palliative chemotherapy. These data will be presented in due course, especially in Chap. 3 and 5, in which the results of the qualitative research I conducted in Brazil and Germany in 2018 will also be addressed, in order to observe the expectations of patients with advanced cancer in relation to palliative chemotherapy. In short, concern with the misunderstanding of patients cannot be summed up in the curability or non-curability of their cancer. By checking how often patients did not understand the purpose of a palliative treatment, some probable sources of these misconceptions can be raised. According to Buiting et al., the trend toward the increased use of chemotherapy at the end of life has been described as an escalation of aggressiveness in cancer treatment, which at the same time has resulted in worse quality of care for the patient [21]. This greater aggressiveness does patients no favors as they believe they are going through a weakened present state for the sake of a future in which the disease will no longer exist. In questioning whether information can be transmitted without destroying all hope, Wanzer et al. believe that even patients with poor or terminal prognosis should know the truth. For the authors, the decision not to tell the truth to the patient due to fear of their inability to deal with the information is not justifiable. Maintaining hope is a constant concern of health professionals [21]. However, in order to combine the need for effective communication with the duty of honesty in the provision of information, it is necessary to gauge the content of the hope intended to be maintained, so that there can be talk of a reasoned hope. One of the most important rights of the patient, regardless of belief in the existence of curative or life-prolonging treatments, is the right to expect reasonable continuity of care [22], especially in relation to the relief of symptoms and pain. Palliative or supportive care has the primary goal of guaranteeing the patient the best possible quality of life with maximum autonomy, based on a multidisciplinary perspective of physical and psychic pain management with adequate communication with the patient and his/her relatives, who are also the recipients of care. The topic will be addressed in Chap. 6.

6

1 Introduction

Callahan tells us that “to care for someone is to give him or her our time, attention, sympathy, and whatever social help we can muster to make the situation bearable and, if not bearable, at least one that never leads to abandonment, the greatest of all medical evils” [23]. However, the prioritization of care, above the idea of treating and medicating at any cost, is still a distant reality. And this only intensifies if, on realizing that what is being offered is not health, we entertain illusions and reject the approaching end of life, instead of seeking ways to actually provide health for these patients. Although the right to health is universally recognized, the way in which health systems are funded encourages therapeutic obstinacy. The reimbursement of health services is usually given to the patient in terms of “active” treatment, surgery, and chemotherapy – and not to avoid or prevent their pain [24]. Previous studies had already suggested that referring patients to palliative care late is inappropriate for changing the quality of care provided to cancer patients and that for there to be a significant effect, services need to be provided early [25]. This resistance to the culture of palliative care in the case of diseases whose invariable outcome is death stems largely from our resistance to the acceptance of mortality itself. The inability to accept finitude as being natural for humans means death is seen as an evil, and hence the maintenance of life at any cost, personal and social, becomes an obligation [26]. Although death is part of the human condition, technological advances make us believe that we can postpone it indefinitely. However, sooner or later, death always imposes itself. And, given this inexorable reality, palliative care for patients with serious incurable diseases whose natural evolution is death allows for as much life as possible until that point arrives. The best health, the best hope.

References 1. Nuland SB. How We Die: Reflections of Life’s Final Chapter. New York: Vintage; 1994. 2. Mukherjee S. The Emperor of All Maladies: A Biography of Cancer. 4. ed. New York: Scribner Book Company; 2011. 3. The Lancet. The Lancet: Cancer now leading cause of death in high-income countries – while heart disease burden persists in low-income and middle-income countries. EurekAlert!. 2019. https://www.eurekalert.org/pub_releases/2019-­09/tl-­pss083019.php. Accessed 26 Jun 2020. 4. Mukherjee S.  O Imperador de Todos os Males: Uma Biografia do Câncer. São Paulo: Companhia das Letras, 2010. p. 13 (Nota do autor). 5. Breivik J.  We Won’t Cure Cancer. In: The New  York Times. 2016. https://www.nytimes. com/2016/05/27/opinion/obamas-­pointless-­cancer-­moonshot.html. Accessed 18 Sept 2022. 6. Folha de São Paulo. Morte sem Tabu. https://mortesemtabu.blogfolha.uol.com.br/ Accessed 25 Jan 2023. 7. The Lancet Oncology. Turning taboos into action. Lancet Oncol. 2017;18:1137. https://doi. org/10.1016/S1470-­2045(17)30641-­1 8. National Institutes of Health. National Cancer Institute. Cancer Statics. https://www.cancer. gov/about-­cancer/understanding/statistics. Accessed 18 Sept 2022.

References

7

9. European Commission. A cancer plan for Europe. https://ec.europa.eu/info/strategy/ priorities-­2019-­2024/promoting-­our-­european-­way-­life/european-­health-­union/cancer-­plan-­ europe_en. Accessed 05 Nov 2022. 10. Murad Júnior M. Avaliação de Escore Preditor de Mortalidade em Pacientes com Tumor Sólido Avançado. 2011. 48f. Dissertação (Mestrado)  – Programa de Pós-Graduação em Saúde do Adulto, Faculdade de Medicina, Universidade Federal de Minas Gerais, Belo Horizonte, 2011. 11. Brasil. Ministério da Saúde. Instituto Nacional do Câncer. Câncer de pulmão. https://www. gov.br/inca/pt-­br/assuntos/cancer/tipos/pulmao (2022a). Accessed 18 Sept 2022. 12. Brasil. Ministério da Saúde. Instituto Nacional do Câncer. Incidência. https://www.inca.gov. br/controle-­do-­cancer-­de-­mama/dados-­e-­numeros/incidencia (2022b). Accessed 18 Sept 2022. 13. Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama (FEMAMA). Por que mais de 70% dos casos de câncer de mama no Brasil são diagnosticados em estágio avançado. https://femama.org.br/site/noticias-­recentes/por-­que-­mais-­de-­70-­dos-­casos-­de-­ cancer-­de-­mama-­no-­brasil-­sao-­diagnosticados-­em-­estagio-­avancado/ (2019). Accessed 18 Sept 2022. 14. Portal PEBMED.  Diagnóstico errado contribui para aumento de câncer colorretal avançado. 2019. https://pebmed.com.br/diagnostico-­errado-­contribui-­para-­aumento-­de-­cancer-­ colorretal-­avancado/?utm_source=artigoportal&utm_medium=copytext. Accessed 18 Sept 2022. 15. Brasil. Ministério da Saúde. Biblioteca Virtual em Saúde. Novembro Azul: mês mundial de combate ao câncer de próstata, Brasília. https://bvsms.saude.gov.br/novembro-­azul-­mes-­ mundial-­de-­combate-­ao-­cancer-­de-­prostata/. Accessed 21 Apr 2023. 16. Wise PH.  Cancer drugs, survival, and ethics. BMJ. 2016;355:1-4. https://doi.org/10.1136/ bmj.i5792 17. Cancer Research UK. Immunotherapy and its side effects. https://www.cancerresearchuk.org/ health-­professional/treatment-­and-­other-­post-­diagnosis-­issues/immunotherapy-­and-­its-­side-­ effects#immunotherapyaccordion1 (2021). Accessed 18 Sept 2022. 18. Ventola CL. Cancer Immunotherapy, Part 2: Efficacy, Safety, and Other Clinical Considerations. P T. 2017;42(7):452-463. 19. Wright AA, Zhang B, Keating NL, Weeks JC, Progerson HG. Associations between palliative chemotherapy and adult cancer patients’ end of life care and place of death: prospective cohort study Associations between palliative chemotherapy and adult cancer patients’ end of life care and place of death: prospective cohort study. BMJ. 2014;348:g1219. https://doi.org/10.1136/ bmj.g1219 20. Pessini L. Distanásia: Até Quanto Prolongar a Vida? São Paulo: Loyola; 2001. 21. Buiting HM, Rurup ML, Wijsbek H, van Zuylen L, den Hartogh G.  Understanding provision of chemotherapy to patients with end stage cancer: qualitative interview study. BMJ. 2011;342:d1933. https://doi.org/10.1136/bmj.d1933 22. American Patients Rights Association. AHA Patient’s Bill of Rights. https://www.americanpatient.org/aha-­patients-­bill-­of-­rights/. Accessed 12 Jul 2021. 23. Callahan D. What Kind of Life: The Limits of Medical Progress. New York: Simon & Schuster; 1990. p. 144. 24. The Economist. A better way to care for the dying. 2017. https://www.economist.com/ international/2017/04/29/a-­better-­way-­to-­care-­for-­the-­dying. Accessed 30 May 2018. 25. Temel JS, Greer JA, Admane S, Gallagher ER, Jackson VA, Lynch TJ et  al. Longitudinal Perceptions of Prognosis and Goals of Therapy in Patients With Metastatic Non–Small-Cell Lung Cancer: Results of a Randomized Study of Early Palliative Care. J. Clin. Oncol. 2011;29: 2319-2326. https://doi.org/10.1200/JCO.2010.32.4459 26. Callahan D.  The Troubled Dream of Life: In Search of a Peaceful Death. Washington: Georgetown University Press; 2000.

Chapter 2

What Is a Right to Health?

The so-called right to health is the object of heated and in-depth discussions at different levels, all around the world. There are debates on its nature, content, the limits of society’s responsibilities and of individuals’ obligations, and the theory that should govern it. It can be said that generally the current concept of health submits itself to Evidence-Based Medicine, which can be defined as “the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients” [1]. The central idea of Evidence-Based Medicine (EBM) is that decision-making in medicine should be guided by an explicit and honest search for the best scientific evidence from the medical literature. In other words, it moves away from the medical practice based on trial and error, without control of systematicity and method. Thus, not only casuistry is rejected but also the absolutism of medical autonomy, which finds limits in rigorous scientific basis. It is important, therefore, not only the existence but also the quality of the existing studies,1 the methods used, the sponsors of the research, the groups of patients evaluated, their own characteristics, the conditions in which they are maintained, the estimated time, among other elements that make the conclusions reached more objectively valid [3]. To make this possible, regarding therapeutic decisions, results are only accepted from controlled studies in which patients were randomly chosen in properly conducted studies, in a representative sample large enough to have the statistical power to detect clinically significant differences and, also, when the patients’ follow-up losses were minimal and the appropriate statistical analyses were performed [4].

 On bone marrow transplant for breast cancer in the late 1990s, performed on about 40,000 women in the world, at an estimated cost of two to four billion dollars, the supposed studies that supported their evidence consisted of a fraud, a farce, with the admission of counterfeiting [2]. 1

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. P. d. Araújo, Palliative Treatment for Advanced Cancer Patients, https://doi.org/10.1007/978-3-031-30776-8_2

9

10

2  What Is a Right to Health?

The right to health cannot, therefore, be guided by an approach of why not [try]? instead of a why and for what [to treat]? There may be – and usually are – technical discussions about the quality of available scientific evidence pointing to the greater or lesser chance of technological efficiency. But, if the right to health should not be perceived as a phenomenon related merely to independent expectations of plausibility, it is essential to shift the discussion to the technical relevance of the request. In this sense, being sick, wanting to receive certain medicine and having a medical prescription at hand are not enough to justify its granting.

2.1 Health The proper approach to the right to health requires considering the obvious but often ignored aspect that the first step to study is to understand what the health that underlies it is. In fact, the excessive – and sometimes obsessive – attention to the right often overshadows the core of the intention and its very reason to exist. Therefore, before discussing what the right to health is, it is necessary to understand what health is. The general and frequent reference to the term “health” in different contexts can create the false idea that its meaning is easily definable. On the contrary, it is a subject of extreme complexity, and there are several theories that aim to conceptualize health, based on assumptions that are sometimes irreconcilable. Nevertheless, the concern with the definition of health is treated with disinterest in the disciplines that constitute the so-called “health field” [5]. The difficulties of conceptualization seem to have increased even more in the institutional definition of health as “a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity,” in the Preamble to the Constitution of the World Health Organization, adopted by the International Health Conference, in New York, June 19–22, 1946. The definition presented has been questioned since its creation but in an increasingly severe manner in recent decades, being considered counterproductive in the face of population aging and changing disease patterns [6]. The “ideal” state described in the proposed meaning is criticized and therefore considered by many to be “useless” or simply “bad.” It has even been suggested that this is “a ludicrous definition that would leave most of us unhealthy most of the time” [7]. It is interesting to note Jadad and O’Grady’s observation about a search for the terms “health” and “definition” on Google in 2008, which returned more than 14 million results, with an emphasis on the Wikipedia website – not the World Health Organization [8]. This finding led the researchers to question:

2.1 Health

11

So what does the future hold? Were the goals set in 1948 too ambitious? Is the concept of health a ‘deception’? Should we lower or readjust our expectations about our ability to decrease the number of premature deaths and our power to conquer chronic diseases? Is it even possible to reach a basic level of agreement on the meaning of the word health? Is health a construct that can be defined and measured? Can any definition of health be operational? [8]

Concluding that no definition of health would be able to capture its complexity, the authors believe that one may be able to deduce the concept of health through the services that society can afford, which directly results in the constraint of expectations [8]. The need to adapt expectations to resources is one of the kernels of the concept as phenomenon embraced by the Law since, naturally, the definition of health is a limiting factor of the right that consecrates it. But the term “resource” should not be interpreted in its most restrictive sense, as financial limitation. It should be understood as the set of elements that make possible the accomplishment of health as a tangible right, including human and, mainly, technical resources, so that medicine and health sciences are not expected to provide more than they can. In this context, regardless of the admitted difficulties in the conceptualization of health and the complexity involved in delimiting a multidimensional term, the abstraction of the pertinent right is unthinkable without the precise understanding of what its content means. In fact, even if, epistemologically, it may be concluded that it is impossible to speak of a univocal and static concept of health, the legal definition of what health is in the context of a given State is a naturally elementary question for discussing what the right to health becomes, then, according to its wording. The field of health encompasses not only human biology – genetic inheritance and biological processes inherent to life – but also the environment, including housing and the workplace, as well as lifestyle and health care organization. Thus, although the term health is usually associated to medical assistance and outpatient and hospital services, with special attention to drug treatments in recent decades, they are not necessarily the most important components of the health field. In this sense, one of the most prominent Brazilian writers and physicians, Moacyr Scliar [9], who died in 2011, used to highlight that having drinking water and healthy food could be more beneficial than medicine. In the legal context, it seems clear that when talking about health, the reference is to the measures available to avoid diseases or illnesses, or to recover from them, restoring the standard of normality applicable within the technical consensus, assuming, of course, that there is something to be done in order for the recovery to take place. In July 2011, BMJ published an analysis in which Machteld Huber and other researchers proposed that the definition of health promoted by the WHO since 1946 should change its emphasis to “the ability to adapt and self-manage in the face of social, physical and emotional challenges” [6].

12

2  What Is a Right to Health?

Both the WHO definition and the one suggested by Huber, however, do not help in delimiting the legitimate expectations of the recipients of the right to health. And, if there is any possible conclusion from this scenario, it is that a proclaimed right to health is not self-explanatory, both because there is no predefined definition of what health is and because abstract concepts will not allow us to define its universe of possible and warranted benefits.

2.2 Right to Health: Can We Have What We Want? 2.2.1 What Right to Health? In 2002, the World Health Organization published the first edition of the Health and Human Rights Series, in which the United Nations High Commissioner for Human Rights, Mary Robinson, stated that: The right to health does not mean the right to be healthy, nor does it mean that poor governments must put in place expensive health services for which they have no resources. But it does require governments and public authorities to put in place policies and action plans which will lead to available and accessible health care for all in the shortest possible time. To ensure that this happens is the challenge facing both the human rights community and public health professionals [10].

The International Covenant on Economic, Social and Cultural Rights states, in Article 12, that “the States-Parties to the present Covenant recognize the right of everyone to enjoy the highest level of physical and mental health,” and that “the measures which the States-Parties to this Covenant are called upon to take to ensure the full exercise of this right shall include such measures as are necessary to guarantee,” among others, “the creation of conditions to ensure medical care and medical services to all in case of sickness.” The right to health is regulated in very different ways in different countries, despite the general guidelines established by the World Health Organization. Expectations held in the Law are often confused with expectations held in society in general, which are often based on individual and subjective assumptions about what should actually be expected from other individuals and institutions. Understanding this dissonance is important in the process of accepting what the legal norm can actually provide, avoiding frustrations with the Law regarding issues that cannot be resolved by it. The right to the highest level of health is subject to the progressive availability of resources, which means that there is no requirement that the comprehensive health system be implemented immediately. What is required from the human rights perspective is that “States take effective measures to progressively work toward building an effective health system that ensures access to all” [11].

2.2  Right to Health: Can We Have What We Want?

13

This progressive realization does not mean that a State is free to decide the measures simply because they reflect some degree of progress, since the State has a duty to adopt the most effective measures [11]. The philosopher Daniel Callahan, founder of the longest running independent bioethics research institute in the world, The Hastings Center, argues that the adequacy standard of the health system cannot be so low as to exclude many legitimate individual needs, nor so high as to demand such a level of medical advances and expenditure that make it ridiculous or unavailable [12, p. 45]. For him, the progress of Medicine has led to denying the limits of what is really possible and blurring the line between desires and need [12, p. 47]. Besides giving us unachievable aspirations, this results in an inability to separate hopeful desire from genuine necessity [12, p. 32]. The author recalled, back in the 1990s, that any really serious consideration of health systems must take into account the meaning and nature of health, as well as the place that the search for health should occupy in our lives [12, p. 11], so that it does not become a supposed end in itself [12], pp. 22–23. One of the most important aspects discussed in the international arena regarding the right to health is equitable access to available resources. According to Hunt and Backman, these central obligations are, among others, to ensure the equitable distribution of health-related services and facilities, guaranteeing their provision on a nondiscriminatory basis and with a focus on populations in need [11]. Verifying the legitimacy of the actions taken by the State in order to ascertain equity in the investment of resources and the sufficiency of gradual progress, however, is no easy task. As the authors ask, how do we prioritize between, for instance, a new teaching hospital or improving sanitation in more needy areas? There are no set or easy answers to these questions, but decisions need to be made “by way of a fair, transparent, participatory process, taking into account explicit criteria, such as the well-being of those living in poverty, and not just the claims of powerful interest groups” [11]. There are many ways to interpret the equitable or equal distribution of health services [13, p.  1, 14]: does it relate equally to all citizens or only to those who deserve health care at all times? Should it be proportionally distributed according to the severity of the diseases and situations? Is equity considered only in relation to the specificities of health or in relation to the general context of each citizen’s opportunities? Despite various combinations that permeate different theories, it is possible to state that certain legal configurations do not meet any understanding of equity. To illustrate the point, imagine a society A, in which most of the population has no basic health care, which could save many from fatal diseases or reduce their capacities. In addition, there is a lack of painkillers and palliative care. Now imagine that, despite this, this same society invests its resources mainly in measures that, although they cannot save patients with chronic or irreversible diseases, can offer them, with greater or lesser quality and comfort, some survival. Is it possible to say that the health services offered in this society are distributed in an equitable way?

14

2  What Is a Right to Health?

In counterpoint to society A, imagine society B in which all citizens are fully satisfied in their main health needs and in which no one dies or ceases to enjoy good service due to failures in the provision of services. In addition, all patients in need have palliative care at their disposal. This society, without interfering in this reality, decides to dedicate part of other available resources to experimental treatments for incurable patients with poor prognoses. There is no doubt that the distribution of resources in A and B is significantly different, and it tends to be believed that B is a more equitable society than A in relation to the provision of health services – although, without further information, it cannot be said that B is necessarily an equitable society, depending on the theory adopted. But how does this relate to the recognition of individual wills as needs by the State – and before the State? Naturally, the legal systems that allowed societies A and B to reach the stages they are in differ substantially. The right to health enshrined in each one has different dimensions, but it is still the right to health legitimized by the corresponding law. This means that it is not what is intended by health, in itself, that guarantees what will be sought and offered within a country. For this reason, it is important that society understands which right to health is foreseen in the legal system that governs it, so that the expectations and pretensions toward the State and providers are legally legitimate. In this sense, both in society A and B, the right to health may or may not be being observed in light of the legal framing.

2.2.2 Construction of the Right It may be said that the legitimacy of decisions related to health services provision through a fair, transparent, and participatory process, taking into consideration explicit criteria, finds its first expression, at least in theory, in proper democratic legislative process, a major corollary to the very purpose of Law. The characteristic that people should be governed by the Law to which they are bound and that the Law should be such that people are able to be led by it is the inherent virtue of the Law as a result of an instrumental conception, the so-called legal certainty [15]. One of the most important aspects of legal certainty is precisely the prior knowledge of relevant legal norms, which enables the evaluation of the correct character of decisions made by state authorities [16]. In this sense, the democratic production of the Law, which enshrines legitimate expectations concerning health benefits, is an indispensable requirement for the implementation of this fair  – albeit procedural  – transparent, and participatory process. Although there is no doubt that there should be the greatest possible participation of the norm’s beneficiaries as effective interlocutors in the available discussion forums, especially in relation to social rights, it is necessary to objectively

2.2  Right to Health: Can We Have What We Want?

15

understand what is meant by the common affirmation that the meaning of health and health services should be socially constructed. Therefore, it is necessary to differentiate the definition of health itself – and its corollary right – from the promotion of public policies that intend to consecrate it and, as such, are not confused with it. In fact, the debate on what health is, as per the Law, differs conceptually from the debate on what to do and how to promote it. Therefore, the statement that the beneficiaries of health measures should participate in the definition of health is not equivalent to the statement that they should participate in defining health policies aimed at its promotion, which require the observance of technical and population criteria. The relevance of this discussion refers to the constant confusion established between what prescribes the democratically produced norm and what determines the public policies created to make it effective. This is because, in general, the legal norms that govern the right to health have a high degree of abstraction and generality, which can only be resolved in the disposition of more specific and concrete rules. By questioning the legitimacy of these rules, it is assumed that subjective rights may be violated on the grounds that the public policies produced would not be in accordance with the more abstract legal norms – these, in turn, would lack the necessary certainty for the objective stipulation of these rights and, consequently, render the control of State decisions and actions ineffective. Indeed, without the rigorous identification of the objective right to health, not only are the subjective rights affirmed unknown but also the duties to these correspondents. In this scenario, individual interests – or mere wishes – are transformed into necessarily legal individual interests, without considering that this implies affirming omission in the provision of services that were not even known. In Brazil, for instance, most judges remain oblivious to the legal provisions, seeking supposed grounds for health actions outside the rules of the legal system. As I wrote on another occasion, Repeated decisions handed down by Brazilian Judges in cases demanding the free granting of oncologic medicine by the State – Federal Government, States, Municipalities, Federal District – violate the basic legal premise that one must first seek the legal norm that regulates the specific case, especially if it does so expressly, analyzing its appropriateness or the need for its removal in order to rule on that specific case. This judicial stance threatens the normativity of the Brazilian legal system, considered as the capacity of the norms to “mean that something should be or happen, especially that a man should conduct himself in a certain manner” [17]. These decisions, without any consideration of the rules specifically governing the matter, require the federated entities to provide the requested medicine immediately, on the basis of fundamental rights norms, such as the right to health, life and dignity of the human person, which, as Alexy states, are often characterized as principles [18], pp. 73–74. These decisions, without even mentioning the broader legislation, especially the infra-­ legal acts that expressly govern the supply of medicines for the treatment of cancer in Brazil, grant requests in opposition to what the ignored legislation stipulates, under the argument of applying various constitutional principles [...].

16

2  What Is a Right to Health? It is important to emphasize that these normative acts are edited for the implementation of the relevant public policy, in accordance with what is determined by the Federal Constitution of 1988 [...]. It is noticeable that this stance by the Judiciary, which is recurrent not only in health-­ related issues, ends up transforming the Brazilian model of fundamental rights into a model of principles alone, disregarding the pertinent rules and, therefore, causing frequent vulnerability in the very principles that are pursued, theoretically, in the terms of the decisions themselves. [...] However, [...] this disregard for the rules creates a serious problem of normativity, not only in relation to the rules, which have their legitimate ought-is content threatened, but also in relation to the principles themselves, the realization of which often occurs through the exact application of the rules [13], especially in the case of public policy implementation. [...] as Alexy comments, principles, in themselves, are never definitive reasons since, as they are prima facie reasons, when considered in isolation, they also establish merely prima facie rights. Thus, if decisions presuppose the identification of definitive rights, which cannot be reached by isolated consideration of principles, those decisions that weave determinations based on an abstract form on “right to life, dignity and health” they err, firstly, by disregarding the cited rules from the Health Ministry Ordinances, and secondly, by the absence of decisive reason for a concrete judgment of ought-is [18, p. 24]. Even if this were not the case, “the determinations established at the level of the rules take precedence over certain alternatives based on principles,” because when determinations are established at the level of the rules, it was decided more in favor of certain principles [18, p. 121]. [...] In view of the above, it is noted that the refusal to apply rules present in the system, without recognizing or denying their validity, leads to a loss of normativity that radiates to the very principles whose implementation is at stake. By determining that political entities use public resources for the acquisition of medicines, resources not earmarked for these purposes, the judicial rulings undermine the very achievement of the principles that supposedly substantiate them, particularly because they only resolve that specific case, while the public policies that aim at the achievement of the principles consider, within the budgetary limits, long-term gains and the collective as a whole [19].

Regarding the central object of this work, the protection of the Law from what could be called “an attempt to escape from mortality” distorts the acceptable expectations of citizens, who start to perceive their impositions on providers as “subjective rights.” Despite the impossibility of accomplishing the “need” to overcome all diseases and prolong life indefinitely, this distorted perception of what the State – and consequently society as a whole – owes to the individual interferes in the distribution of resources for the ordinary fulfillment of health benefits, allocating a considerable part of what is efficient, and therefore actually consecrating rights to health , to what is only a hopeful and, at best, absolutely unlikely attempt. In doing so, we disregard the fact that the public policies to achieve the right to health are more than desirable, even necessary in order to institutionalize the level of individuals’ legitimate expectations and, therefore, of the obligations claimed. Indeed, the State should promote not only the recognition of the right to health but also provide clear predictions on what society expects – and can expect – from the health services [11].

2.2  Right to Health: Can We Have What We Want?

17

2.2.3 Limits of Subjective Claim to a Right Callahan says that instead of thinking and discussing death and the appropriate choices in the process of dying, we transform the issue into the language of rights and choices. The most important thing becomes not what we should do, but the fact that we have a right to it, whatever it may be [20]. It is important to recognize that the right to health generates different types of obligations on each State, according to the legal system that delimits the subject. Daniels states that someone asserting a right to health claims “that certain individuals or groups (or society as a whole) are obliged to perform certain actions which promote or maintain his/her good health and are obliged to refrain from actions which interfere with it.” [13, p. 6]. In a similar sense, Callahan recalls that “the claim that we have a right to healthcare is a claim that our neighbor (ordinarily through the instrumentality of government) has an obligation to provide that assistance necessary to meet our individual health needs.” [12, p. 58]. The answers that the Law can provide to individuals or society are not, however, able to solve problems in the understanding of solidarity’s limits, much less the limits of science itself. Although its influence on the directions of society is undeniable, the role of Law is to promote legal predictability and certainty and not the illusion that one can go beyond the limits of humanity itself. This statement does not apply exclusively to them but has special relevance in the cases of people with life-threatening illnesses and their resistance to the idea that their lives may actually be coming to an end. Although there may always be something more to be done for a patient, this additional effort does not necessarily translate, legally or morally, into a right to health. Perhaps, it should not be accepted as such. The decision not to insist on overstepping a threshold whose surpassing is highly unlikely may be taken by a society that prefers to use its resources, not just financial ones, for more effective measures that really benefit many people over the attempt to benefit some – often at the expense of even more suffering and frustration. In this sense, it can be said that the absence of the right to health as a result of the absence of scientific evidence supporting a specific outcome is not a mere legal definition present in public health systems, no matter how integral they are intended to be. It is also an important step in the evolution of society in relation to the dimensioning of expectations regarding medicine and human finitude. As such, it is always important to understand that the subjective right to health provision, besides observing the positive law that prescribes it, must be analyzed from the congruence between what the patient expects to obtain through it and what can be objectively guaranteed through its provision, with a high degree of probability. In this context, there is doubt as to the recognition as a right those benefits, which, while patients may believe can cure them or grant them long survival even at the cost of high suffering, could according to the best scientific evidence available merely prolong their lives for a short time and not necessarily with any real quality.

18

2  What Is a Right to Health?

It is important to emphasize that it is not about leaving patients without access to established technologies or unassisted. The core of the debate is the dissonance between what is expected from technologies and what they can really offer to patients. What we want to have is often impossible because of the very finite nature of man and the limitation of solutions from medicine and other sciences  – and not because of the imagined inability to manage or to reserve resources.

References 1. Sackett DL, Rosenberg WM, Gray JA, Haynes RB, Richardson WS. Evidence based medicine: what it is and what it isn’t. BMJ. 1996;312:71–72. https://doi.org/10.1136/bmj.312.7023.71 2. Mukherjee S. The Emperor of All Maladies: A Biography of Cancer. 4. ed. New York: Scribner Book Company; 2011. p. 328 3. Araújo CP, López EMP, Junqueira SRS.  Judicialização da saúde: saúde pública e outras questões. Porto Alegre: Verbo Jurídico; 2016. p. 78. 4. Atallah AN, Castro AA. Medicina baseada em evidências: o elo entre a boa ciência e a boa prática. Revista da Imagem. 1998;20:5–9. 5. Almeida Filho N. O que é saúde? Rio de Janeiro: Editora Fiocruz; 2011. 6. Huber M, Knottnerus JA, Green L, van der Horst H, Jadad AR, Kromhout D et al. How should we define health?. BMJ. 2011;343:d4163. https://doi.org/10.1136/bmj.d4163 7. Smith R. The end of disease and the beginning of health. The BMJ Opinion. 2008. https:// blogs.bmj.com/bmj/2008/07/08/richard-­smith-­the-­end-­of-­disease-­and-­the-­beginning-­of-­ health/. Accessed 27 May 2018. 8. Jadad AR, O’Grady L.  How should health be defined?. BMJ. 2008;337:a2900. https://doi. org/10.1136/bmj.a2900 9. Scliar M. História do Conceito de Saúde. PHYSIS: Rev. Saúde Coletiva. 2007;17:29–41. 10. World Health Organization. 25 Questions and Answers on Health and Human Rights. In: Health & Human Rights Publication Series. 2002. https://www.who.int/publications/i/ item/9241545690. Accessed 27 May 2018. 11. Hunt P, Backman G. Health systems and the right to the highest attainable standard of health. Health Hum Rights. 2008;10:81–92. 12. Callahan D.  What Kind of Life: The Limits of Medical Progress. New  York: Simon & Schuster; 1990. 13. Daniels N.  Just Health: Meeting Health Needs Fairly. Cambridge: Cambridge University Press, 1985. 14. Rauprich Oliver, Marckmann G, Vollmann J. Gleichheit und Gerechtigkeit in der modernen Medizin. Paderborn: Mentis; 2005. 15. Raz J. The authority of law. New York: Oxford University Press; 2009. p. 212–213. 16. Dimoulis D. Positivismo jurídico: introdução a uma teoria do direito e defesa do pragmatismo jurídico-político. São Paulo: Método; 2006. p. 197. 17. Kelsen H, Teoria Pura do Direito. Tradução de João Baptista Machado: São Paulo: Martins Fontes; 2000. p. 7. 18. Alexy R. Theorie der Grundrechte. Nachdruck: Suhrkamp Verlag AG; 2008. p. 73–74. 19. Araújo CP.  A Concessão Judicial de medicamentos para o tratamento oncológico? Uma questão de normatividade. Revista da AGU. 2013;141. 20. Callahan D.  The Troubled Dream of Life: In Search of a Peaceful Death. Washington: Georgetown University Press; 2000. p. 36.

Chapter 3

A Right to Health or a Right to Hope?

The central argument put forward in Chap. 2 is that the contours of the right to health require the consideration of Evidence-Based Medicine. Evidence-Based Medicine does not limit the right to health. On the contrary, it is the very form generally adopted to define health, among so many possible options in the literature. In other words, the right to health is the right to health based on evidence and not the right to engage in trial-and-error until resources are exhausted. The cancer biography prepared by Mukherjee shows that, except for occasional accidents, the process of trial and error has not been providing good results in oncology. The author demonstrates that part of the unpredictability of cancer’s trajectory in the future is due to the fact that we do not know the biological basis of its heterogeneity, while even knowledge of cancer’s biology does not mean that it will be eradicated from our lives [1, p. 465]. It is important to state that the evidence we are discussing must be considered from the point of view of the expectation of a possible outcome and not from the existence of any benefit at all, especially when one considers “benefit” any result over the part of the body that can be meaningless for a patient’s well-being. As cited by the Council of Europe in the Guide on the decision-making process regarding medical treatment in end-of-life situations, “when assessing whether a form of treatment is appropriate in view of the particular situation of the patient concerned, the following issues need to be addressed: the benefits, risks, and constraints of medical treatment according to the anticipated effects on the patient’s health; their appraisal in view of the expectations of the person concerned” [2].

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. P. d. Araújo, Palliative Treatment for Advanced Cancer Patients, https://doi.org/10.1007/978-3-031-30776-8_3

19

20

3  A Right to Health or a Right to Hope?

3.1 The Right to Health Should Be the Foundation of a Medical Prescription The starting point for the idea of a right to hope in contrast to the right to health has been Brazilian heath litigation, given that a significant part of the Brazilian Judiciary is not concerned with the legal delimitation of a right to health and considers any medical prescription, even when not observing the best existing evidence, as sufficient to certify the right of access to a certain health technology. In other words, it abdicates the power to apply positive law in favor of the medical prescription, judicially presumed as indisputable. Should it be concluded, then, that these are unsubstantiated decisions, or could there be other possible grounds to justify their widely favorable content? It is in the context of the answer to this question that the idea of a “right to hope” arises. The existence of such a legal arsenal built around the right to health in cases where, in the end, only the unrealistic expectations of the patient and, sometimes, of the physician are considered, could indicate a diverse phenomenon, which may be implicitly present in the legal system, or merely the object of a kind of moral agreement. But the truth is that this differentiation between health and hope in these cases does not need to result in health litigation. The acceptance of the desire for more treatment as a demand for health does not depend, in most cases, on judicial intervention. It can actually be considered to at least intend a consecution of a right to health everytime a physician indicates a treatment as a necessity, since, implicitly, the reason why a medical prescription is given to the patient needs to be anchored in the idea of maintaining or restoring their health. It is possible to note here that the subject is far from being a characteristic unique to the Brazilian health system. Daniel Callahan, the eminent bioethicist who died in 2019, stated in the nineties that “we have lost our way because we have defined our unlimited hopes to transcend our mortality as our needs, and we have created a medical enterprise that engineers the transformation” [3, p. 33]. This phrase could be said to apply, to a greater or lesser extent, to the whole occidental world. According to Schneiderman and Jecker [4, pp.  147–148], in what has subsequently become a reference with regard to medical futility, it has become a matter of increasing embarrassment that physicians fail to justify their treatment prescriptions, that is, fail to show the evidence that would support the indication of the prescribed technology. This posture may be the result of society’s optimistic belief that each new treatment is more likely to succeed than to fail which invariably generates enthusiasm and pressure to use new drugs, even while the most serious empirical data demonstrate the misconception of this assumption. Indeed, an estimate made by the physician and researcher Thomas Chalmers shows that, with the exception of the discoveries of penicillin for pneumonia, vitamin B12 for pernicious anemia, insulin for diabetic acidosis, and one or two other

3.2  Medical Futility and the Obligation to Combat Therapeutic Obstinacy

21

situations in the entire history of medicine less than one in every thousand new treatments introduced per year prove to be unequivocally successful. In other words, almost all of them are of limited, dubious, or insignificant benefit, if not harmful. In this context, patients do not have a right to demand therapies for which there is no demonstrated benefit [4, p. 150], including cases of treatments that offer some benefit, but not the one expected by the patient. The success of medicine has increased expectations beyond the sustainable, holding the system hostage to an infinite demand for new, usually expensive, technological solutions, which ensure marginal gains at ever higher costs [3, p. 23]. This affirmation finds great expression in the palliative treatment of cancer.

3.2 Medical Futility and the Obligation to Combat Therapeutic Obstinacy Despite the difficulty in standardizing the situations that may be framed in this light, it can be affirmed that medical futility encompasses interventions incapable of altering the prognosis of a disease [5, p. 20]. Many authors classify futility in quantitative and qualitative terms. Thus, the treatment can be considered quantitatively futile when the probability of the patient receiving some benefit falls below the desired threshold and is not worth pursuing. Qualitative futility, in turn, involves analysis of the benefit quality associated with the intervention, prioritizing the will of the patient and the quality of life desired according to his/her objectives [5, p. 21]. In this sense, it can be said that the futile or obstinate therapeutic measure is one that has a low probability of achieving the patient’s goal, be it because the physician judges its medical effectiveness unlikely, or because there is no meaningful survival according to the patient’s personal values [6]. The context of therapeutic obstinacy involves the unspoken principle that the best for the patient always lies in another treatment, whatever it may be and in spite of its improbable or marginal beneficial effects. It can be claimed that the evaluation of medical treatment benefits that enable futility to be verified can only be done in relation to the individual patient and not in relation to other patients [4, p. 75].However, by stating, for example, that it is possible to consider futile a treatment whose best (likely) outcome is very low [4, p. 83], futility may be recognized for several patients who are submitted to the same criteria, depending on the available scientific evidence. Indeed, the existence or not of systematic reviews or comparative studies between treatments, for example, may indicate the futility of treatment for several patients who fit certain indicators. This is what allows public policies to be based on the best available evidence, using the evaluation of health technologies. Many legal professionals believe that the supposed sovereignty of the medical prescription stems from the need to respect the patient’s individuality.

22

3  A Right to Health or a Right to Hope?

In contradiction, the idea of individuality is invoked as an argument that no one can know more about what is better for a patient than the tending physician, even if there is no study to support his/her action and even if the professional often knows a lot about the disease and little about the patient. Taking into consideration medical prescriptions that only superficially recommend a certain treatment as indispensable, despite evidence to the contrary and without any information or specificity of the patient to justify the medical conduct, is not a form of recognizing the individuality of each patient, quite the contrary. It must be said that evidence alone does not define the course of a treatment – or the lack of it – since decisions must be made along with the patient. However, it is clear that the evidence points to the probability of achieving a certain outcome through one conduct or another: Evidence from clinical trials provides the information to create hypothetical imperatives in the form of “If you want to maximize the chances of ‘A’ outcome, then do ‘B’. Whether the chances of ‘A’ outcome should be maximized is not an empirical question: it is not answerable by an appeal to the evidence. Rather, it represents a normative (ethical) question. In the practice of medicine, the question of maximizing the chances of a particular outcome cannot be asked without specific and detailed knowledge of the individual. It is necessary to understand the objectives, values, and preferences of the individual patient for any determination about what medical intervention should be offered. The distance between research and practice, then, is not only epistemological, but also ethical [7].

Therefore, attention for the patient does not mean that the best scientific evidence available may or may not apply to that case  – although, exceptionally, this may occur within the limits of medical imprecision. It is rather a matter of preserving the importance of the doctor-patient relationship and of understanding the patient’s wishes, in order to verify what the best evidence says about the desired outcome. All the reasons that lead to the recommendation of the requested technology – including issues specific to patients who understand the low effectiveness of measures and still wish to undergo them  – must be discussed with patients and be detailed in the medical reports. Moreover, personal beliefs that certain patients may eschew the evidence are ineffective in defining the right of access to treatment, not being a justification to dismiss what is probable based on a mere claim that something is hypothetically possible. In the book “The Art,” from the Hippocratic Corpus, the roles of the physician are described as to alleviate the suffering of patients, reduce the violence of their illnesses, and refuse treatment to those patients “overmastered by their diseases, realizing that in such cases medicine is powerless” [8]. Although some authors discuss the content and current applicability or prevalence of the Hippocratic Oath, especially in relation to emphasizing the principle of non-maleficence [9], it can be said that the Hippocratic Oath remains the direct source for the ethical and personal care that physicians must provide their patients. It is important to also point out that, historically, there is enough evidence to suggest that “saving life” was not considered one of the physician’s obligations until at least the eighteenth century. It is therefore an essentially modern idea [10, p. 59],

3.2  Medical Futility and the Obligation to Combat Therapeutic Obstinacy

23

although today an attempt is being made to invoke it as the physician’s main or even sole duty. Therefore, medical futility should not be seen only from the perspective of the potential benefit of the technology to be employed, but of the possibility that its use outweighs the negative consequences inherent to any medical treatment. For patients at the end of their lives – be it a month or more than a year – this is even more necessary, since, as previously stated, patients under treatment in the final stages of their illness are less likely to understand that life is near to an end. Moreover, how we decide to use our remaining time may depend on how much time we believe lies ahead [11, p. 97]. According to Article 12 of the Principles of European Medical Ethics, adopted in 1987 on the International Conference of Medical Professional Associations and Bodies with similar remits, in all circumstances, medicine implies constant respect for life, moral autonomy and the patient’s free choice. However, in the case of incurable and terminal conditions, the doctor may limit himself or herself to relieving the physical and moral suffering of the patient by giving appropriate treatment and by maintaining, as far as is possible, the quality of a life nearing its end. It is essential to assist a dying person until the end and to act in such a way as to maintain that person’s dignity.

Before that, the 1976 Council of Europe Assembly Recommendation on the rights of the sick and dying No. 779 affirmed the rights of the patient to dignity and integrity, to information, to appropriate healing, and not to suffer unnecessarily [12]. In Brazil, the fundamental principle inscribed in Chapter I of the Brazilian Code of Medical Ethics states that, “in irreversible and terminal clinical situations, the physician will avoid performing unnecessary diagnostic and therapeutic procedures and shall provide patients with all the appropriate palliative care” [13]. In addition, according to article 41, sole paragraph, of the same law, In cases of incurable and terminal illness, the doctor must offer all available palliative care without undertaking useless or obstinate diagnostic or therapeutic actions, always taking into consideration the expressed will of the patient or, where this is not possible, that of his/ her legal representative.

In 2006, the Brazilian Federal Council of Medicine issued Resolution No. 1805, through which. Art. 1 The physician is allowed to limit or suspend procedures and treatments that prolong the life of the terminally ill patient, with a serious and incurable illness, respecting the will of the person or his/her legal representative. § Paragraph 1 The physician has the obligation to make clear to the patient or his/her legal representative the appropriate therapeutic modalities for each situation. § 2 The decision referred to in the header must be substantiated and placed on record. § 3 The patient or his/her legal representative is guaranteed the right to request a second medical opinion [14].

In terms of universality, it is worth observing the reasons provided for amending the Resolution: We learned a lot about cutting-edge technology and little about the ethical meaning of life and death. A 1995 paper published in the Archives of Internal Medicine showed that only

24

3  A Right to Health or a Right to Hope? five out of one hundred and twenty-six American medical schools offered classes on human terminality. Only twenty-six of the seven thousand forty-eight medical residency programs dealt with the topic at scientific meetings. Unprepared for the issue, we began to practice medicine that underestimated the comfort of patients with incurable diseases in terminal phase, imposing long and agonizing suffering on them. We postpone death at the cost of senseless and prolonged suffering for the patient and his/her family. The terminality of life is a condition diagnosed by the physician in the face of a patient with a serious and incurable disease; therefore, it is understood that there is a terminal illness, and not a terminal patient. In this case, the priority becomes the sick person and no longer the treatment of the disease. Evidence seems to show that we have forgotten the classical teaching that recognizes the doctor’s function “to heal sometimes, to relieve very often and to comfort always”. We have stopped caring for the sick person and we have committed ourselves to treating the sick person’s illness, unaware that our primary mission must be the pursuit of the physical and emotional well-being of the sick person, since every human being will always be a complex biopsychosocial and spiritual reality.

Savoi and Dadalto claim that the practice of dysthanasia should be opposed whenever it is contrary to the patient’s will. If it is the patient’s wish, “it is suggested to adequately inform and explain to the patient and, if his/her wish persists, request authorization from the Institution’s Ethics Committee or the Regional Medical Council to resolve the conflict” [15]. However, this would require the recognition that the patient’s desire for therapeutic obstinacy transforms into a right to what is admittedly not health; thus, it is necessary to question what this right is and whether the legal system should safeguard it. More than that, it would be necessary to identify to whom this right could be contested since, as required by compliance with the best available scientific evidence available, it could not be considered a duty of the State or of the health provider. For Schneiderman and Jecker, not only are physicians not obligated to provide futile treatments, they must not provide them [4, p. 13], even if patients want them [4, p. 19]. The same authors believe that the Hippocratic Oath provides a basis for understanding that physicians should not only be authorized to reject futile interventions but also be encouraged or even obligated to refrain from application as, besides being inefficacious, they may raise false hopes, cause unnecessary pain, prolong suffering, and distract physicians from providing palliation and comfort [4, p. 109–110]. For Macklin, to say that a treatment is futile is not the same as to deem it inhumane [16]. However, if it is possible to assume that the physician’s primary obligation is, besides not harming the patient, to act in his/her best interests, we must recognize that the inhumanity of a treatment may lie exactly in its futility, especially in cases where there is a clear lessening of autonomy, resulting from the lack of understanding of the therapeutic purpose. Lantos and other authors state that “a physician is under no obligation to offer, or even to discuss, futile therapies” [17]. But the same authors understand that “when

3.3  Patients with Advanced Cancer as an Ideal Parameter for Understanding…

25

the chance of success is low, but the alternative to treatment is death, and the patient wants the therapy, the presumption should be in favor of the treatment” [18]. However, conditioning does not apply to cases in which the disease inexorably evolves to death, whereby one cannot contemplate an “alternative”. While it may be assumed that someone would hardly refuse to go through a treatment that imposes pain and suffering if its likely outcome were a better and longer life, the same cannot be said of those who submit themselves to pain for minimal or unlikely benefit or for some benefit, which singularly fails to meet expectation.

3.3 Patients with Advanced Cancer as an Ideal Parameter for Understanding the Dichotomy Between Health and Hope Although the discussions regarding medical futility cover perfectly typical situations of patients with advanced cancer, it is noticeable that most of the general literature on the subject disregard palliative treatments, notably chemotherapy. The approach of futility generally prioritizes patients who no longer possess the effective conditions to make decisions and drastic measures to prolong life, such as resuscitation, hydration or artificial feeding, and mechanical ventilation. The marginalization of oncologic patients appears, for example, in works such as Wrong Medicine [4] and Limits of Principles [18], which make light reference to the subject. More in-depth analysis only appears in a few specific articles [19, 20]. Advanced cancer patients, however, represent a specific universe that deserves differentiated attention since, for the most part, a more or less close death is the most likely reality, as much as the state of awareness and full capacity for decision-making. The therapeutic prospects in oncology are often disappointing, and poor results (survival of a few months) are suggested as reasonable outcomes, a viewpoint encouraged by the pharmaceutical industry, which abuses statistics to report fallacious gains. Gordon and Daugherty state that for metastatic cancer patients, treatment options are limited and have, at best, the potential for only marginal therapeutic benefits [21]. This reality has not significantly changed. A recent BMJ study demonstrated that most cancer drugs approved by the European Medicines Agency (EMA) came on to the market with no evidence of survival or quality of life benefits. In addition, more than 3 years after their incorporation, there was either no conclusive evidence of any benefit, or their benefit was often marginal [22]. Prasad highlights that even those marginal benefits generally occur in trials involving younger patients with less comorbidity than the mean population groups. Thus, even these marginal gains can disappear entirely when these drugs are evaluated from the population perspective [23].

26

3  A Right to Health or a Right to Hope?

Although the aim of palliative cancer treatment is to improve the quantity or quality of life, clinical studies often use only indicators of surrogate measures, alternatives that are not reliable for demonstrating these outcomes [22]. In Malignant: How Bad Policy and Bad Evidence Harm People with Cancer, the American oncologist and hematologist Vinay Prasad demonstrates how many cancer drugs are approved by regulatory bodies and prescribed without there being any evidence as to their efficacy [24]. One of the main reasons for this is exactly these surrogate measures. As the pharmaceutical industry has not been able to demonstrate an increase in overall survival or an improvement in the quality of life with most of its drugs, what it has done is to present results that seem like good news, but which make no difference in terms of longevity or quality of life. A good example of this is the progression-free survival, something that is used as a justification in most medical reports that indicate the need to use a certain treatment for advanced cancer patients. Prasad presents several studies that have demonstrated that, overall, there has been no relationship between increased progression-free survival and increased overall survival. In other words, saying that a drug is needed based on this result is a fallacy. There has been no proof in most cases that the patient will live longer because of this. Where is then the (right to) health we should seek when prescribing these drugs? The therapeutic obstinacy of oncologic patients with a poor prognosis is striking. Indeed, several studies show the trend of increased use of chemotherapy for patients in the final stage of cancer, although it has been described as an escalation of aggressiveness in cancer treatment, which at the same time has resulted in worse quality of care for the patient [25]. This greater aggressiveness does patients no favors as they believe they are going through a weakened present state for the sake of a future in which the disease will no longer exist. A study conducted in 2017 by The Economist in partnership with the Kaiser Family Foundation (an American nonprofit organization dedicated to health issues, with special concern for the production and dissemination of reliable information – www.kff.org) shows that “one eighth of Americans with terminal cancer receive chemotherapy in their final fortnight, although it does not provide any benefit at such a late stage” [26]. Recent research conducted in Brazil, utilizing a large sample, showed that 45% of patients were submitted to chemotherapy in their last 30 days of life [27]. In 2017, the decision by a Brazilian TV news anchor to abandon conventional treatment in search of an alternative treatment against advanced pancreatic cancer was intensely discussed. Marcelo Rezende said he abandoned palliative chemotherapy because “the drugs that they are giving me seem more likely to kill me than save me” [28]. Much was said about the ineffectiveness of the alternative treatments sought by some cancer patients. Little was said, however, about what Rezende’s effective chances were by continuing with palliative chemotherapy  – conventional

3.4 Hope

27

treatment – and about the reasonableness of its continuation in light of the unbearable suffering he considered himself to be undergoing. In 2020, the report of a 31-year-old patient with terminal cancer, published in The Guardian [29], received wide attention. Citing the experience of being a patient with a terminal illness during the pandemic, Elliot recounted that he had started experimental treatment to stop the cancer from robbing him of all the nutrients and energy his body needed with the result that his days were reduced to moving between bedroom and living room. He felt stricken with flu and mental confusion with the drug making his life almost impossible. The attempt to survive (more) in the case of the oncologic patient with advanced and often already terminal disease, including side effects that frequently make it impossible for the patient to leave the hospital or even the bed itself, can lead to a longer existence when a shorter life would often be possible. Palliative cancer treatment and the form in which combinations of medicines happen – through the very need to kill cells in uncontrolled growth while preserving healthy cells – are managed by the idea of limits in tolerability and toxicity. When there was still a belief in chemotherapy’s potential to cure metastatic cancers in general, Rose Kushner, a member of the US National Cancer Advisory Council, warned that, its side effects include life-threatening ones, like someone vomiting to the point of rupturing the blood vessels in the eyes [1, p. 208]. The American philosopher Thomas Nagel believes, however, that “life is worth living even when the bad elements of experience are plentiful, and the good ones too meager to outweigh the bad ones on their own. The additional positive weight is supplied by experience inself, rather than by any of its contents” [30]. Hart reinforces this by stating that the overwhelming majority of people wish to live, even at the cost of terrible suffering [31]. This position, besides underestimating pain, cannot be considered an expression of a desire for health. It can, at best, be seen as a search for hope. For Wise, although providing hope is an important part of every human transaction, neither individuals nor society have the right to transmit false hopes because they are useless in achieving human well-being, which should be the sole purpose of all our relationships (statement in personal conversation with Peter Wise in 2018)1.

3.4 Hope Working with hope in the case of cancer is not a possibility; it is a necessity. Potentially curable patients, even those manifesting a better prognosis, will rarely have an easy path until it is eventually completed. Often, only a great deal of hope

 The complete interview with retired physician and researcher Peter Wise is the second Annex of this book. 1

28

3  A Right to Health or a Right to Hope?

will get them to the end of a difficult course of treatment, and its absence would possibly reduce the chances of both a cure and greater life expectancy. But having to accept enormous suffering in order to achieve a much-desired success is completely different from accepting it for any possible and disputed effect, which often cannot even be called a benefit. A real benefit with a small chance of happening is considered improbable, and it could even be said that the hope of it occurring is therefore negative. However, it is not empty hope. It is even intuitive that people who accept great suffering in search of an unlikely but possible cure will not accept the same if the cure is unattainable. While it’s hard to say how prevalent this sentiment is, there are studies showing that “patients with advanced cancer would accept toxic treatment for even a 1% chance of cure but would be unwilling to accept the same treatment for a substantial increase in life expectancy without cure” [32]. Naturally, this acceptance tends to vary according to the quantity and quality of life that could plausibly be guaranteed. The neurosurgeon Paul Kalanithi, who was diagnosed with terminal lung cancer in his mid-30  s and died less than 2  years later, examined, in his autobiography, When Breath Becomes Air, the origins of the word hope, citing that it first appeared in the English language about a thousand years ago to denote a combination of trust and desire [33, p. 133]. In the book’s epilog, his wife notes that Paul “faced each stage of his illness with grace – not with bravado or a misguided faith that he would ‘overcome’ or ‘beat’ cancer but with an authenticity that allowed him to grieve the loss of the future he had planned and forge a new one” [33, p. 219]. Gabriel Marcel, a French philosopher who wrote a book on the metaphysics of hope – Homo Viator: Introduction to the Metaphysic of Hope – states that hope cannot be reduced to the notion of a simple desire for something that is “hoped” to happen or be achieved [34]. Marcel’s Metaphysics of Hope – especially relevant in the face of the infrequent consideration of hope from the philosophical point of view, despite its familiarity in human experience [35] – consists “in an inner attitude that, in an unconditional way, moves the being to resist despair, in a self-awareness that does not succumb to the force of time and circumstances, but that leads it to react positively” [36].

3.4.1 Marcelian Hope In the context of a holistic existentialism, Gabriel Marcel wants to demonstrate a process through which hope can be obtained despite devastating pain, suffering, and feelings of abandonment [37, p. 3]. Hope in Marcel is not a vague illusion, but rather a pragmatic concept that involves the kind of limitation to what can actually be done [37, p. 60]. Therefore, the object of hope is reality and the possibilities for creation based on this reality, of what exists and really can be changed.

3.4 Hope

29

In the words of the philosopher, “as I make my hope conditional I myself put up limits to the process by which I could triumph over all successive disappointments” [34, p. 46]. One can, however, distinguish between two types of hope in Marcel [37, p. 61]: ordinary hope expresses the desire for a future event that one wants, but about which the agent has little to contribute and therefore “is insistent on imagined outcomes,” thus approximating mere wishing, which has an object that is independent of the agent’s doing, like winning the lottery. As such, the chances that the situation one hopes for will come about are not increased or decreased by the actions of the person who wishes for it. True hope, or hope in a fuller sense, on the other hand, is distinct from mere wishing, because the agent has a role in the outcome of the situation, learning reality, not a hypothetical illusion, and being able to interfere with that reality. That is why I call it pragmatic hope. In its fuller or genuine sense, therefore, hope is not an unwarranted will, independent of something improbable and submitted to chance, but rather a propeller of attitudes linked to real goals. It is not a matter of calculating possibilities, but of creating them in an active sense [37, p. 67]. According to Marcel, through hope, “I do not create in the strict sense of the word, but I appeal to the existence of a certain creative power in the world, or rather to the actual resources at the disposal of this creative power” [34, p. 52]. Only hope in this second sense, focused on genuine transformation, can relieve the individual of pain, because instead of eliminating, it incorporates despair in overcoming it. In the other sense, the ordinary or absolute hope – inseparable from a faith that transcends the conditions of concrete possibility – could be identified with despair itself [34, p. 47]. According to Marcel, it is the mission of hope to respond to a sign of suffering [34, p. 31]. Despair, on the other hand, is a feeling that there is no way out of the situation individuals finds themselves in, who then discover that they are unable to establish any kind of relationship that allows them to transcend their pain and experience healing [37, p. 10]. Hope in its fuller sense allows the individual to choose to move forward despite despair [37, p.  69]. In this sense, there can be no hope when the temptation to despair is not there. Therefore, the counterpoint to hope cannot be despair, since one depends on the other. While for Spinoza, “hope is nothing more than an unstable joy, arising from the image of something future or past whose realization we doubt,” as opposed to fear, which “is an unstable sadness, similarly arising from the image of something doubtful” [38]; for Marcel, hope is a true virtue. Thus, considering that every virtue is the particularization of a certain inner strength, living in hope is the maintenance of faith in the moment of darkness. According to Pieper, however, the description of hope as a virtue only occurs to a philosopher if he/she is also a Christian theologian. Inciting Thomas Aquinas, he

30

3  A Right to Health or a Right to Hope?

claims hope becomes a virtue in becoming a theological virtue, which represents two virtues in particular, magnanimity and humility. Returning to Thomas Aquinas and Aristotle, Pieper [39, p. 99–102] recalls that magnanimity decides in favor of what is the greater possibility for the human potentiality of being at a given moment. Humility, in turn, refers to the acceptance of the distance between creator and created and, therefore, acceptance of the reality of their nature, which separates the concrete possibilities available to humankind from what can only be considered miracles. Despite the limitations understood by Pieper to considering hope as a virtue, it is possible to find an interesting parallel to his ideas, which enable us to better grasp the true hope presented by Marcel. In this regard, the desire for a miracle, while legitimate, does not entitle us to entrust its occurrence to reason or science, or, in other words, to the limits of the human. A miracle is what it is: irrational, inexplicable by the laws of nature that we can know. Meanwhile, the agent’s possibilities for interfering with reality are in the universe of reason. For Marcel, true hope helps the individual to be moral and thus provides a way to see new possibilities that may be liberating, in the sense that one can choose to exercise control only over what can really be controlled, accepting that not everything is beyond control. Marcel argues that acceptance can mean standing firm, preserving your integrity: Because I am condemned never to recover from this illness, or not to come out of this prison, I do not mean to give up, I do not consent, from this very moment, to be the useless creature which my illness or my captivity may finally make of me; I will counter the fascination which the idea of this creature might have for me with the firm determination to remain what I am. It may thus come about that by accepting an inevitable destiny which I refuse with all my strength to anticipate, I will find a way of inward consolidation, of proving my reality to myself, and at the same time I shall rise infinitely above this fatum to which I have never allowed myself to shut my eyes [34, p. 38].

From the realization that not everything is lost, even if there is no cure  – or chance of a long life – it is more than likely that the inner attitude about recovery or non-recovery will change radically, thus recovering freedom [34, p. 46]. There will therefore be no suffering relative to whether or not one is doing everything possible to achieve healing, since it has already been accepted that it is not a possible object. At the same time, the decision to undergo a treatment becomes genuinely ethical, since it is not being determined by false illusions on the real possibilities for interfering in the given situation. According to Pieper, hope says that “everything will be fine” – for humanity, for us, for me, while despair says that “everything will not be fine”. Both the one who hopes and the one who despairs choose these attitudes of their own free will and let them determine their conduct [39, p. 114]. Moral action based on hope then translates into pragmatic action influencing a possible outcome and is therefore dependent on the knowledge of the effective chances resulting from each conduct.

3.5  Is there a Right to Hope?

31

3.5 Is there a Right to Hope? Considering that the information is given to the patient with honesty, the analysis of hope undertaken here calls into question the possibility of acting truly hopeful by waiting for an unattainable outcome as per the available evidence. However, the very honesty of the information is challenged. According to Nuland, physicians often believe it necessary to give a cancer patient the mistaken message that it is possible to have months or years of symptom-­ free life because they do not want to “take away hope” from the patient. He states that although undertaken with “the best of intentions,” “the hell whose access road is paved with those good intentions becomes too often the hell of suffering through which a misled person must pass before he succumbs to inevitable death” [40, p. 223]. Disregarding this reality, the physician, instead of seeking ways to help his/her patient face the reality that life is coming to an end, giving him/her the true hope, denies the constant presence of death by adopting “medical doing something” [40, p. 224]. Besides implying the impossibility for the patient to correctly understand his/her chances – and consequently the effectiveness of interference in the outcome through his/her actions (submission to treatment) – this posture, not always conscious, of the physician leads to people not believing in their little or no chance. In “Il Malato Immaginato (The imagined ill),” Italian physician Marco Bobbio [41] states that doctors are prepared to prescribe high-risk procedures, but not to accept that there are no more treatments available and that medicine and doctors have limits to what can be done for patients. Although it is difficult to locate the source of absolute hope  – which ends up being confused with despair itself  – and it can certainly be suggested that many times it stems merely from the primitive human instinct for survival, it is impossible not to believe that many times it will result from the fact that “doctors everywhere become all too ready to offer false hopes” [11, p. 192]. The so-called ordinary or absolute hope ends up playing a determining role in the decision for treatments, sacrificing the quality of the patient’s existence in the present through the adoption of measures and procedures, which, in some way, it is believed will be able to guarantee more life time in the future – even if it is very short and of low quality. People who opt for treatments that can only prolong their lives – a little – often at the cost of great suffering and little or no increase in useful life are not, according to Gawande, “thinking a few added months. They’re thinking years” [11, p. 174]. At the end of the road, hope for “permanent” improvement will inevitably be abandoned. But until then, how many hours, days, and weeks have been dedicated to illness and not to health or life? Shouldn’t we state that, at least legally speaking, we need to accept that health is not to be confused with treatments and stop crediting medicine with possibilities that it does not possess (at least not yet)?

32

3  A Right to Health or a Right to Hope?

In a book about the importance of hope for patients with serious diseases, oncologist and hematologist Jerome Groopman [42, p. 66] tells the story of a friend called George, a doctor who decided to undergo highly aggressive treatments despite the bleak prognosis of his cancer. The author and everyone around him believed that it was unnecessary and useless suffering. According to available studies, less than 1% of patients with the same diagnosis lived longer than 8 months. Despite this, George was cured. Groopman [42, p.  73–74] claims to have felt guilty, because if it had depended on him and the physicians caring for the patient, he would not have lived. The patient, in turn, had said he knew his chances exactly– he was actually a specialist in the specific disease that affected him. George’s view was that. I, of course, had a crystal-clear understanding of my chances. And it was my right to choose what I did. Even if I didn’t prevail – and I didn’t expect to – it was my only chance. [...] It is a medical miracle. [...] What it says is that even the most aggressive and gruesome cancers can sometime be stayed. They rarely are, and what we have to throw at them is so crude and so toxic. But sometimes that primitive therapy works. The unexpected happens.

From George’s story, Groopman concludes that there is a “right to hope,” [42, p. 84] which is a superficial and mistaken conclusion on the matter, at least from an argumentative point of view, since the very holder of the alleged right recognizes that he did not believe he could survive despite the attitudes taken, which makes them much closer to despair than to hope. Besides, it is known that almost all patients would not even be able to understand the prognosis as George did. Anyway, George is a point outside the curve and not a pattern. Moreover, it is not even possible to say that his outcome was determined by the treatments he underwent or to what extent it happened [43]. Finally, was he really cured or the cancer was under remission for some time – for how long? In any case, it would, at the very least, be necessary to question the possibility of demanding treatment from a doctor, despite the absolute lack of conviction and scientific probability of success. In addition, there would be a need to discuss the possibility or not of demanding from society the cost, in all its forms, arising from this decision. George survived. But what can this demonstrate about a supposed right to hope, if it doesn’t happen in almost every case, regardless of what is done? And even when it does happen as an exception, it will be impossible to determine the exact cause of the unexpected outcome. In other words, even if it could be shown that insistence on treatments without the prospect of a cure that are driven by hope means someone is saved in exceptional circumstances – which is in itself an assumption, given the difficulty in establishing a necessary causal relationship between the treatments and the cure – a right to hope would not emerge from this in itself, since policies cannot be created on the basis of the possible exception. George’s narrative, in fact, demonstrates what was said before by Callahan, in the sense that, instead of thinking and discussing death and the appropriate choices

3.5  Is there a Right to Hope?

33

in the process of dying, the most important thing becomes not what we should do, but the fact that we have a right to it, whatever it may be [10, p. 36]. The study entitled “Understanding Provision of Chemotherapy to Patients with End Stage Cancer: A Qualitative Interview Study” by Buiting and others, published at the BMJ in 2011 [25], aimed to examine health professionals’ attitudes toward the provision of chemotherapy, interviewing nurses and physicians who cared for patients with metastatic cancer. Although both groups reported trying to inform patients fully about their poor prognosis and treatment options, physicians seemed inclined to try to preserve patient’s well-being by offering further chemotherapy. Nurses, meanwhile, also considered patients’ well-being to be important but more often preferred to allow patients to make the best use of their remaining time rather than receiving more treatment. Researchers concluded that “discussing death or dying with patients while at the same time administering chemotherapy was considered contradictory as this could diminish the patients’ hope”. If there were recognition that patients have a right to hope  – in an ordinary Marcelian sense, when it most resembles a right to despair – this conduct of physicians could be justified, although even so, questions could be asked as to what should prevail: more health or maintaining the hope of healing or long-term improvement in spite of the evidence. If the general and abstract right to hope is nonexistent, however, it is necessary to admit that poor communication by the physician, maintaining false hope and thus putting the patient’s health at risk, cannot be justified and, in particular, cannot turn unfounded desires into rights. Another element linked to hope should also be considered. In the aforementioned study by Buiting et al., it was concluded that the trend toward greater use of chemotherapy at the end of life can be explained by the posture of not giving up, mutually reinforced by doctors and patients, as well as by the interpretation of the quality of life given by physicians, which includes the maintenance of hope as a necessary element. To insist on the treatment of patients based exclusively on this criterion seems much more an attempt to justify the difficulty of communication than a proof of humanity, especially when it is known that most studies do not consider quality of life as the main outcome. In fact, although quality of life is reported by many physicians as a reason for insistence on palliative chemotherapy [25], quality of life evaluation is not usually the primary outcome of any of the main trials, and in any case, it rarely shows significant improvement in this respect, even when proposed as such. According to Davis et al. [22], in the previously mentioned study on the benefits of cancer drugs approved by the European Medicines Agency (EMA), although many of the drugs in their sample were approved to treat metastatic cancer, when the purpose of treatment should be to improve quality of life or overall survival (ensuring that the gains are not outweighed by a deterioration in quality of life), none of the pivotal trials assessed quality of life as a primary endpoint. About half

34

3  A Right to Health or a Right to Hope?

of all drug indications assessed quality of life as a secondary endpoint, but in only 10% of cases was there a significant improvement in quality of life at the moment of evaluation before the drugs entered the market. In any case, in order to justify the abovementioned medical action, even if a right to hope could be alleged, serious studies would be necessary to demonstrate, at the very least, (i) that the lack of hope in the ordinary sense actually has a negative impact on quality of life; however, as shown in the following chapters, studies show precisely the opposite; (ii) that this impact is significant enough to compromise the patient’s autonomy; (iii) and that this impact is greater than the negative impact on the quality of life from the treatment itself (adverse side effects), provided under the argument of maintaining hope.

3.5.1 Opposed Directions For Scheiderman and Jecker, the futility of a treatment has nothing to do with the lack of hope about it. Hope and hopelessness are about psychological reactions to objective facts. In this sense, people react in different and opposite ways to the same events. And “although physicians regard hope as an important psychological aid in medical care, they should not invoke hope as justification for deceiving patients by misrepresenting the facts. There are better, more humane, ways to comfort patients” [4, p. 173]. Nuland’s [40, pp. 226–227] account of his attitude toward his brother Harvey’s advanced cancer is a good illustration of the concerns highlighted. Nuland says he had heard about a new experimental treatment using an unusual combination of two agents in a way that had never been tried before. The 5-fluorouracil-interferon program had reduced tumor size in 11 out of 19 patients in the only test performed. The small number of patients treated suffered a variety of toxic side effects, not one was cured, and there was even one death induced by the chemotherapy. Even so, he says that he let his instinct as a brother overwhelm his judgment as a doctor who had treated several patients with terminal diseases. Asking himself if he could really have thought that a potential cure had magically appeared just when his brother was diagnosed, he says that he was probably motivated by the inability to tell him the truth of his prognosis and that Harvey paid a high price for this unfulfilled promise of hope. He adds that, in similar cases, when he explained the toxicity of certain desperate forms of treatments, some of his advanced cancer patients had wisely chosen not to treat, finding their hope in other ways [40, p. 231]. Nuland’s account helps us realize that health and hope will often indicate diametrically opposed directions of conduct, which leads to the necessary reflection on the normative opposition between the right to health on the one hand, and hope on the other. This is because, in terms of legal guardianship, the recognition of one can rule out the possibility of confirming the other.

3.5  Is there a Right to Hope?

35

Certainly, some say that where there is no therapeutic possibility, anything will do. But this statement does not mean “anything” is confused with health. Moreover, given the serious effects of many treatments, it is known that even something very bad can become even worse, and so defending anything would mean raising hope to an absolute value, above any other. This is what happened with the substance phosphoethanolamine in Brazil, especially in the year 2015, when several judges and courts determined that the University of São Paulo and public entities should provide the so-called “cancer pill” to cancer patients. Synthetic phosphoethanolamine is a substance that was independently studied by Prof. Dr. Gilberto Orivaldo Chierice, formerly connected to the Group of Analytical Chemistry and Polymer Technology of the University of São Paulo (USP). These independent studies involved the methodology of synthesis of the substance that was eventually used for medicinal purposes, without undergoing the necessary studies. As some patients reported a supposed cure, there was great publicity in the press, generating a pilgrimage of patients and relatives in search of hope in the new substance. When the research that originated this work began, the controversy regarding phosphoethanolamine had not yet come to the fore in Brazil. But its sudden appearance meant that important aspects of the counterposition between what health effectively is and what is reduced to hope began to be addressed even in newspapers and nonspecialized television programs. The subject, so often ignored in the technical agenda, became the object of debate in all kinds of media. The subject had international repercussions, leading to the publication of scientific articles on the risks that unproven drugs pose to regulatory authorities, health care systems, and patients [44]. At the time, Dr. Daniel Martins de Barros even wrote in his column in the Estadão newspaper that “if you’re not aware of the controversy surrounding the cancer pill, know that this is a fundamental chapter in the country’s ethical-legal history” [45]. Barros repudiated the concessive stance of the Brazilian judiciary and said that “when Justice decides to ignore science, it is not guaranteeing access to health, but merely selling false hopes”. In the same Editorial, he highlighted that about 90% of oncologic drugs are rejected in phase 3 trials and that it would be absurd to consider that someone could benefit from a substance – which could not be considered a drug yet – that had never even entered phase 1. Barros emphasized that, contrary to what several judges believe, “reports of improvement” mean nothing in scientific terms. As I once wrote for a doctoral presentation, the judicial decision needs to at least claim to be scientific. If the Law is a Science itself in theory, there is no sense in it not being in practice. Besides, if the Law exists precisely so that the judge is not free to decide based on his/her own feelings or personal reasons, the requirement that these judicial decisions be supported by scientific evidence – and not by random reports – is a mere logical corollary of the Law’s existence.

36

3  A Right to Health or a Right to Hope?

Barros also recalled that alleging that phosphoethanolamine could “cure cancer” was illogical, since, as previously mentioned, a lot of diseases are named cancer, and it does not make sense to think that there would be one universal substance able to act on all of them. Finally, although the families of terminally ill patients can become desperate, they should be protected from quackery and deception and not exposed to it. It must be said that the thousands of patients who pursued the University of São Paulo and the Brazilian State did not even have a medical prescription, meaning that the request to access the substance was actually based on the belief that it could save them from their disease. This is of course a very exceptional case, though very paradigmatic of the extent to which hope can interfere in decision-making. Defining the foundation of what a patient’s expectations are presupposes individuals who effectively know the facts. This perception will generally find its first obstacle in the mistaken understanding of the doctors themselves. One could imagine that doctors were prepared to deal with the difficulty of preparing the patient for the inevitable, which actually does not happen, since the physicians themselves are not realistic. In a study conducted by Christakis and Lamont, doctors of almost 500 patients with terminal diseases were asked to estimate how long they would survive. Not only did more than half (63%) overestimate the survival time of their patients, but the medical estimate was overestimated by more than 500% (53%) [11, p. 167]. In addition, the better they knew their patients, the greater the chance that doctors would make incorrect predictions. The conclusion of the researchers on the prognosis of physicians for end-of-life patients was that doctors’ general inaccuracy, systematically optimistic, may be adversely affecting the quality of care given to patients near the end of life [46]. Worse still, doctors often avoid verbalizing the reality of the patient’s prognosis, even when pressed. And more than 40% of oncologists admit offering treatments that are unlikely to work [11, p. 167]. Therefore, even before the subject reaches the patient, it is already misconstrued, meaning that when doctors speak to them, they already have a mistaken bias. Communication to the patient, in turn, happens in an even more problematic way. At the end of the process, there are still the patient’s own limitations, rarely addressed in studies, but which could in themselves prevent the proper understanding of diagnosis and prognosis. In the following chapter, we will look further into how a precise understanding of their prognosis interferes decisively in the autonomy of patients – or, in cases of vulnerability, their legal guardians – to decide on the treatment they want to undergo. Many patients with advanced cancers overestimate the effects of palliative chemotherapy. Most of them believe that they can be cured by using treatments that can generally increase survival by 1 or 2 months, when they actually work [47]. Taking up Marcel’s theory, only those who are exposed to reality and then choose their own ends can also experience hope in a full sense.

3.5  Is there a Right to Hope?

37

In the context of physicians overestimating medical benefits and patients believing in healing or long survival despite evidence to the contrary, there is no possibility for an understanding by the patient that allows for a full sense of hope. This would require knowledge of the facts from which, overcoming despair, he/ she acts to interfere in an attainable outcome – even if for reasons that are not externally recommendable according to Marcelian theory, which refutes the idea of calculating probabilities. Thus, hope would remain in its ordinary or absolute sense, closer to unfounded desire. Recently, the article “Patients’ Hopes for Advanced Cancer Treatment” was published in the Journal of Pain and Symptom Management [48] and aimed at addressing the hopes of patients with advanced cancer regarding their treatment, recognizing that little is known about it. However, by developing categories of hope unable to demonstrate the real expectations of patients – such as tumor stabilization, remission and disease control – the study, although it merits mention, contributes little to this work. It is believed that categorization along these lines overshadows the importance of the debate, which should focus on patients’ understanding of prognosis and probabilities regarding quality and life span and not on treatment effects or responses that represent nothing to the health or longevity of the patient. We can conclude that prioritizing health or hope in its absolute sense will often lead to the adoption of opposite clinical postures, which demonstrates conduct contrary to health in favor of unfounded hope. Therefore, hope cannot be affirmed as a sufficient element in the composition of the right to health, in opposition to what the available scientific evidence suggests. On the other hand, the goals set according to genuine hope will generally be absorbed by the right to health itself, not by programs of legalized hope, as will be shown in due course.

3.5.2 What Hope? Considering that true hope – not mere wishing – is included in the very concept of the right to health, the hope that might institute the autonomous right under investigation here has a particular reference: discounting the possibility of referring to the access to various treatments as a consecration of the right to health for patients without a scientifically acceptable prospect of a cure or long-term improvement; could one argue that patients should be entitled to the said treatments by right, even when these treatments have neither the potential of a cure nor the long-term improvement the patient believes in – the so-called right to hope? According to Marcel’s theory [34, pp. 55–56], the application of legal guardianship would be ruled out here, because the presumption that hope makes those who have it creditors of a benefit – consequently making others debtors – is definitely extraneous to its meaning.

38

3  A Right to Health or a Right to Hope?

The author states that hope is always a strictly one-sided contract, stipulating no duties or responsibilities for anyone except the one who hopes. Associating hope with a bilateral contractual relationship would be the same as expecting a favor from another out of mere liberality [34, p. 55], demanding something not as an obligation but as grace, which is an intrinsic paradox. In short, the contractual association to hope would not allow one to speak properly of hope. Based on Marcel’s philosophy, therefore, hope could not force anyone to adopt positive measures in order to achieve the same hope. One might think, however, of the negative obligation to refrain from measures that might prevent it, especially by the State. The adoption of the Marcelian philosophy on this point would not be enough, therefore, to deny the existence of the right to hope, but it would be enough for it to be considered, if existing, a right that is only and definitely negative. Another aspect of Marcel’s philosophy of hope, however, would require questioning the very feasibility of deeming hope a right, even in a negative sense. For the philosopher, hope cannot be considered from the outside, because in this case one enters a universe to which it does not belong – and, therefore, it is not about hope. Marcel [34, p. 66] affirms that what hope confers is the simple affirmation of an object and that this is beyond the reach of objective criticism. He is even more emphatic in answering the question of whether hope is allowed when the reasons are lacking or insufficient: When we bring in the idea of the right to hope, we are entering precisely upon this very process of reasoning by computation which at bottom means a calculation of probabilities. It is as though to hope were to argue in a certain way and as though there were a possibility of enquiring into the validity of the arguments. Looked at from this point of view, the answer to the question is obvious. It is absurd to claim that it can be legitimate to hope without sufficient reasons for hope. But we must repeat once more that here the meaning of the word hope has been completely distorted. [...] What is absurd [though] is the very idea of a right which we can recognize or dispute [34, p. 65].

As such, classifying hope as a right would require recognizing that to an implicitly instituted objective right – since the right to general and abstract hope is not made explicit in any known Law – one could not relate a subjective claim to right, not applicable by the very nature of the institute. Although there are different theories about the nature and definition of a subjective right, which will not be dealt with here, the impossibility of identifying a corresponding claim to an objective right would render the objective right itself inert. The philosophical conclusion reached on the basis of Marcelian theory does not prevent other possibilities for the eventual recognition of a right to hope. But it seems important to keep in mind the panorama drawn from his doctrine. Hope dissociated from evidence represents ordinary hope, which is most associated with unfounded desire or unsurpassed despair itself. Hope in a fuller sense refers to the hope associated with the action of the individual that can effectively interfere with the outcome and therefore allows the agent to promote action based on what he/she knows can become reality [37, p. 63].

3.5  Is there a Right to Hope?

39

This true hope is the hope that, by incorporating despair, can reduce the experience of pain. It is, therefore, that which has recognized moral value. If this hope requires the participation of the individual, one may speak of hope, for example, in cases where a given treatment has a 10% possibility of healing, and a patient submits to it in the hope of being in that small but existing percentage. As seen above, however, this involves hope that, at least abstractly, would already be covered by the right to health itself, according to the level of available evidence. And, naturally, limited resources may interfere with the concrete delimitation of the right to health in this case. A totally different situation is to expect a cure from submission to a treatment that could, at best, extend life by a few weeks or months. In this case, the ordinary hope of a cure can do nothing to interfere with the outcome, much less with the attainment of health, unless we lay outside the general umbrella of reason and science, notably, as previously stated, Evidence-Based Medicine. An association that helps to better understand the correlation between health and hope in this second sense is the differentiation between health and happiness, presented by the Italian epidemiologist and researcher Rodolfo Saracci [49] to reinforce the need for the concept of health to have precise limits. On criticizing the concept of health proposed by the World Health Organization in 1948, he claims that a state of complete physical, mental, and social well-being would correspond better to the concept of happiness than to the concept of health, although the two words refer to distinct life experiences and the relationship between them is inconstant. The distinction between the two concepts is extremely relevant in terms of establishing rights, especially the positive benefits associated with their materialization, since, though health can be considered a positive and universal human right, happiness – and not its material and social determinants – cannot be imposed, meaning that it should not be considered a positive right. Indeed, just as hope in the sense of wishing, happiness is strictly subjective and cannot be exogenously verified, even less legally protected. By way of analogy to the researcher’s conclusions on happiness, attempting to obtain the unattainable (the satisfaction of all kinds of unfounded hopes) will inevitably reduce what can be actually achieved and delivered (good health and real hope). In other words, everytime we expend resources – be they financial, human, or technological – on inefficacious treatment, we fail to invest in approaches yielding better and more humane results. On the World Health Organization’s concept of health, it is also worth mentioning that it is not the task of medicine to create happiness, but to remove the source of unhappiness that results from illness and early death [50]. In this sense, medicine is related both to the improvement of quality of life and to the extension of its duration but as long as these objectives can in fact be achieved through the prevention and treatment of diseases.

40

3  A Right to Health or a Right to Hope?

3.5.3 Can Hope Justify Normative Content? As previously stated, the normative consecration of an abstract right to hope would require it to be considered an implicitly affirmative fundamental right. If we adopt Bobbio’s [51] theory of fundamental rights, even though it has never been stated as such before, an abstract right to hope can be considered a fundamental right, because what is fundamental can gradually change over time. According to the Vienna Declaration and Programme of Action, all human rights are universal, indivisible, interdependent, and interrelated [52]. One of the most important living jusphilosophers, Robert Alexy [53, p. 110], in A Theory of Constitutional Rights, defines human rights according to five characteristics: universality, fundamental character of their object, abstraction, moral character, and priority. Alexy states that universality refers to the characteristic that every human being as such is the bearer of human rights, but that this does not mean being able to claim those rights from any addressee, which depends on the right in question [53, p. 110]. This is the first obstacle to be overcome in order to recognize a right to hope. Could this right be universalized? How could it be possible to universalize an aspect that, besides being subjective, differs according to the specific context, in the face of the diverse state realities of dealing with the right to health? On the fundamental character, Alexy [53, pp.  110–111] clarifies that human rights protect only fundamental interests and needs and not all imaginable means of well-being. Thus, the recognition of the right to hope would require considering hope as a fundamental need of the human being. Py and Oliveira [54] consider that consciously tolerating the idea of death at an undetermined time would threaten the integrity of a human being’s psychic organization. It could thus be said that hope would be a fundamental enough aspect in meeting the second requirement presented by Alexy. On the abstraction of human rights, Alexy [55] refers to three different dimensions: in relation to the addressee, which, he says, refers to the one to whom the right is put; in relation to the modality of its object, more specifically the positive or negative quality of the right; and in relation to restrictive clauses not written, but abstracted from the limitations imposed by the rights that clash with it. The moral character refers to the validity of human rights, according to which a right is morally valid if it can admit a rational basis. In this sense, if the literature supports the importance of hope for patients, then this requirement would also be fulfilled on the path to a recognition of an abstract right to hope. Finally, priority means that human rights cannot have their power invalidated by positive law and, actually, are the standard by which application of positive law must be reinforced. This last characteristic means that if the right to hope can be recognized as a human right, it has the capacity to guide the way positive law is interpreted and, depending on the theory of law adopted, even to invalidate norms that clash with it – an aspect that may also represent a difficulty in its recognition as a fundamental

3.5  Is there a Right to Hope?

41

right, especially when, as shown, it could lead to a situation where health would have to give prevalence to another less feasible and relevant right. But the truth is that an abstract right to hope would find a decisive initial obstacle. In fact, it seems necessary to recognize that a positive dimension to the right to hope could not be universalized, not least by the impossibility of providing it with a minimally objective definition. The right to hope in the meaning of ordinary hope, since a more fuller definition would be generally integrated in the right to health, consists, materially, in the right to believe in a possible miracle – which, in itself, already removes the need for medical intervention – or any other irrational form of scientifically unproven treatment. In addition to the difficulty of ascertaining the strictly subjective element, it would be necessary to accept that patients with identical clinical status, but different subjective expectations and wills, be treated in different ways by the law. Thus, it would not be possible to recognize an abstract right to hope from a positive perspective. On the other hand, there is in principle a negative dimension admissible, in order to verify to what extent the State can prevent the adoption of positive measures by the individual to achieve this right. According to Alexy [56, p. 174], citizens have three types of negative rights vis-­ à-­vis the State: rights by which the State does not prevent or hinder certain actions, rights by which the State does not affect certain characteristics or situations, and rights by which the State does not eliminate certain legal positions. The first group of negative rights, which is of most interest here, is formulated by Alexy [56, p. 176] under the following statement: “a has a right vis-à-vis the State for the latter not to hinder him/her in the performance of action h”. Thus, if the individual does not have the right to demand positive assistance in the name of hope, he/she cannot, on the other hand, be prevented from adopting it by his/her own means. Analysis of legal context is important in verifying a negative right under these terms. Alexy undertakes this with reference to German law. As he explains [56, p. 309], the German Federal Constitutional Court has interpreted the right to the free development of personality, as per article 2, paragraph 1 of the German Constitution, as a right to general freedom of action. This interpretation has two legal consequences: each one is allowed to do or not do what they wish, if no restrictions occur, and each one has the right, if no restrictions occur, that the State does not hinder their action or omission, meaning that the State will not intervene [56, p. 311]. Thus, from a superficial analysis, it may be concluded that the German State does not prevent citizens from adopting, by their means, measures that could be harmful to their health or even their lives, based only on hope and despite no evidence that the measure adopted might have a beneficial effect. In the Brazilian Constitution, on the other hand, Article 5, II, provides that “no one shall be obliged to do or refrain from doing anything except by law”.

42

3  A Right to Health or a Right to Hope?

In spite of legislation restricting the use of substances without minimum proof of safety, the Brazilian Judiciary often removes the need for registration with the relevant health authority not only so that they may be used but also to impose an obligation on the State to make such substances available [57]. This issue, in the context of the conflict between health and hope, was faced by the Federal Supreme Court, in the judgment of Direct Unconstitutionality Action No. 5501, filed by the Brazilian Medical Association, which required a declaration of unconstitutionality for law n. 13.269/2016, which authorized the use of previously mentioned synthetic phosphoethanolamine by patients diagnosed with malignant neoplasm [58], considering its use of public relevance. By majority vote, the Supreme Court granted the injunction that had been requested to suspend the effectiveness of the law until final judgment of the action, considering that “the release of the substance in discussion without the corresponding clinical studies would be reckless, due to the absence, to date, of assertive technical elements on the viability of the drug for the health of the human body”. The vote which led to the decision (Supreme Court Minister Marco Aurélio) stresses that. The hope placed by society in medicines, especially those intended for the treatment of diseases such as cancer, cannot be removed from science. The time of the unbridled search for cures without the corresponding care for the safety and efficacy of substances has gone. The right to health will not be fully realized without the State fulfilling its obligation to ensure the quality of medication distributed to individuals through rigorous scientific screening, thereby warding off disillusion, charlatanism and harmful effects to human beings.

Another vote (the Supreme Court Minister Luís Barroso) has considered that authorizing the use of substances before the necessary safety tests would mean a violation of the right to health. In this sense, a law that subverts the process of drug registration would expose patients that are seeking alterative cures to precisely the risks to the goods the State should provide, notably life, dignity, integrity, and health. Although the Constitutional Court has not faced the issue of hope in relation to health matters in a broad sense and possibly is not aware of the dimension of the arguments adopted as grounds for the decision, it may be asserted that, in the Brazilian case, the Federal Supreme Court, by majority, ruled out the recognition of a theoretical right to hope, even in a negative sense. This does not preclude a return to this discussion, in another context and depending on the composition of the Court, and that the right to resort to treatments based exclusively on hope, albeit potentially harmful, is considered constitutional. Should this happen – which, according to this work, does not seem to be the best solution – two aspects need to be assessed. The first concerns the confusion between judging the conduct in question to be lawful and considering it to be a right to health. In this sense, if a right to health provided for in specific country does not include a wider interpretation than that encapsulated in Medicine-Based Evidence, any recognition of the right to access substances beyond the limits of the desired purposes should invoke a different right – such as the right to hope proposed here.

3.6  Legalized Hope

43

It could also be based on the principle of patient autonomy, an option that could, however, sound contradictory to a legal provision that forbids behaviors also based on it, such as assisted suicide. Indeed, if patient autonomy is not enough justification for helping patients in cases of unavoidable and unbearable suffering, it would hardly be accepted as sufficient reason to authorize unscientific measures for patients whose suffering can be at least minimized. Another possibility relates to its recognition as a logical corollary of the right to human dignity, but hope stemming from unfounded expectation would actually be contrary to dignity, not its reflection. The ethical aspects of this central concept of Bioethics – autonomy and human dignity – will be developed in the next chapter. The second aspect mentioned refers to the dimension of the law. Considering the arguments presented at the beginning of this item, one could invoke a right to hope that authorized submission to treatments without evidence, in a negative sense of the right to hope, but not in a positive sense. This means that allowing the patient to use medicines or therapies in the search for a miracle does not mean recognizing the right to claim them from anyone at all, since it is not a right to health. Thus, even if it existed, this right would mean only and strictly that no one, especially the State, could prevent someone from adopting such ineffective interventions. While the inexistence of a positive definition of a right to hope could be theoretically verified in an abstract way, its negative form would need to be analyzed according to the legal context of each country. However, considerations regarding an implicit and abstract right to hope according to this negative definition are only intended to provide an outline of the complete panorama in relation to this hypothetical right to hope, since the importance of reflection, in the context of health, derive principally from the positive definition.

3.6 Legalized Hope Although it has been affirmed that there is no implicit legalization of a general and abstract hope, which could be the basis of decisions with a normative principle, it is possible to recognize that there are specific rules, which, in defined situations and circumstances, have stated hope. In Brazil, for instance, the Resolution of the Agência Nacional de Vigilância Sanitária-Anvisa (National Health Surveillance Agency) RDC No. 38/2013 regulated three programs for patients with debilitating and serious diseases for which there is no medication or whose treatment is insufficient: the programs of Compassionate Use, Expanded Access and Supply of Post Study Medicine. The Compassionate Use program is indicated only in individual situations that permit access to drugs, which have presented scientific evidence for the requested indication or are in any phase of clinical development, provided that the initial data

44

3  A Right to Health or a Right to Hope?

observed is promising and that the severity of the disease and the absence of available treatments are proven. It means that even this so-called legalized hope is not all embracing. The program of Expanded Access is intended for groups of patients who are prevented from entering a clinical trial due to the inclusion criteria, for being disqualified by exclusion criteria or could not for other reasons access the technology on trial. The drug available has to have at least one phase III study concluded or in progress. Finally, the program for the supply of post study medicine allows research participant access to medicines after the end of a clinical trial or at the early completion of the study, as long as the physician deems there to be benefits, albeit with an acceptance of the foreseen risks. It is important to mention that these programs are not institutionally considered as research procedures, rather health access measures and for that the requests are not subject to approval by Ethical Commissions [59]. Either way, considering their purposes and the lack of scientific recognition of proven benefit, one can speak of legal recognition of the right to hope for patients under the conditions described in the Resolution. These patients, nevertheless, are aware that the treatment made available is “a new therapeutic resource whose efficacy and safety are still under evaluation, and which is being made available to them by the sponsor, who should be identified”. In other words, (a) Although it is known that communication of this may also be inefficient, it is a regulatory requirement that patients be fully aware that the treatment to which they will be submitted has no known efficacy and safety, which separates health from hope until effective functioning is verified. (b) The person responsible for the supply is not to be confused with the health service provider, be they public or private. The hope, in this case, although it concerns hope in a full sense, at least theoretically – since it presupposes effective knowledge of the total experimentality of the drug and the decision to submit to it nevertheless – cannot be included in a right to health. In fact, in relation to these situations, one can say that, given the stage of evidence, the participant does not really have the means to know the effective possibilities for treatment under research. Nevertheless, there are statistical data that demonstrate, historically, the high improbability of success using new technologies for serious diseases, as mentioned. Indeed, Gadelha [60] shows that, even in relation to the so-called innovative drugs that go through all phases of research and achieve health authority registration, approximately 97% of drugs registered in Brazil did not yield any type of therapeutic gain in relation to the drugs that were already being marketed, especially in relation to antineoplastics. Of course, in a few cases, the access to the same treatments, which, at this stage, could be considered as the expression of not more than a right to hope legally

3.6  Legalized Hope

45

recognized, may, depending on future results, come to represent an expression of a right to health. The situation is totally different from that of established treatments for which scientific evidence already exists, but in a negative sense, that is, demonstrating the absence of the potential benefit imagined by the patients who submit to them, in a typical ordinary hope. Especially for terminal patients, any discovery still in the experimental phase may appear as the lifeline to which they cling “and then, whatever the risks, they will appear less serious than current reality” [61]. However, as previously demonstrated, these expectations are rarely confirmed. In the United States, the so-called right to try was also legalized. As well as being a kind of legal sanction of hope for terminal patients, the right to try laws provide terminal disease patients with access to experimental treatments with only first phase approval (of three) for clinical studies by the US Food and Drug Administration (FDA). Before it became a federal law (the Right to Try Act), in 2018, the right to try was regulated in several American states. According to FDA guidelines, a drug cannot enter the market until it is considered safe and effective for human consumption, which only happens after passing the three-phase study [62]. The right to try is, thus, an exception to this. The FDA describes the right to try [63] as a pathway for patients diagnosed with life-threatening diseases who have exhausted all approved treatment options and are unable to participate in clinical trials designed to access drugs that have yet to be granted regulatory body approval. Access requires that the doctor is provided with the patient’s written informed consent regarding the investigational drug, but the FDA asserts that it does not review or approve requests based on the right to try. In addition, it states that a manufacturer or sponsor is not obligated to give access to drugs or biologics under the Right to Try Act. This type of legislation is based on the premise that terminally ill patients have a fundamental right of access to unapproved drugs. According to DelGrosso, it starts with the idea that a person has the fundamental right to try to save his or her own life and does not require government permission in their attempt to survive. It is known, however, that access to experimental drugs, especially still in the first phase of studies – small, with no efficacy assessment intent and whose sole purpose is to provide initial information on adverse effects on humans – in no way represents affirmed survival, since approximately 86% of drugs that go beyond the first phase prove to be less effective than those already available on the market [62]. Indeed, the FDA makes it clear that drugs made available under the Right to Try do not have their safety or effectiveness verified by the institution. It is common to believe that if a patient has a terminal diagnosis, there is no harm in trying. However, there can be enormous and avoidable suffering besides dying from a terminal illness. David Gorsk [64], sciencebasedmedicine.org Managing Editor, once wrote that the right-to-try laws are nothing more than feel-good measures that provide the

46

3  A Right to Health or a Right to Hope?

illusion of actually doing something without actually doing anything substantive to help desperately ill patients. He reminds us that, as with the previously mentioned Brazilian legislation, the United States has also expanded access programs to allow patients to use drugs that have not undergone clinical trials. Moreover, also important to note here is the very low success rate of the tested oncological drugs (3.4% according to research that used a sample of 406.038 entries of clinical trial data obtained between 2000 and 2015) [65]. The main questions that legislation on the right to try face are the absence of constitutional recognition and the lack of consensus on whether there should be such a right, especially in view of the FDA’s powers. Critics of the legislation claim that it weakens the role of the FDA [66]. In fact, representatives from organizations that led the movement for legislative approval claim that the process for agency approval of so-called promising treatments would take too long – this is, however, unconfirmed by the available data [67]. It is worth mentioning here that the same fallacious argument has been made against the Brazilian drug regulatory agency – Anvisa. The negative effects of initiatives such as the legitimation of the so-called right-­ to-­try on clinical trials are also discussed, given that experimental drugs become more easily available outside of clinical trials [62]. It is important to note that in order for patients to gain access to drugs not approved under the regulation of the right to try, they need to declare they are aware of the fact that it is a last resort in view of the terminality of their illness, since the outcome of the drug cannot be predicted and, therefore, even worse symptoms can result from its use [55]. Evidently, patients seeking regularly approved drugs must also sign consent forms, through which they state their knowledge of the medication’s details and, theoretically, its possibilities – which, as better demonstrated below, does not represent effective knowledge and awareness of the object consented to. In any case, the fact that the patient has to recognize his/her terminal condition places hope on another level. Hope involved in compassionate use programs or in the regulation of the “right to try” raises the genuine expectation that an unknown outcome can result from drugs on trial. It is totally different from expecting different and excessively optimistic outcomes from those already proven after the clinical trials conclusion. For this reason, one would be considered a legalized right to hope, against the implicit recognition of an abstract right to hope. In both situations, however, end-of-life discussions might be postponed, given the alternative offered to the patient. In this sense, there will always be physicians who resort to compassionate use proposals precisely to avoid the difficult talk about mortality and limitation of what can be done to avoid it [68]. In this context, instead of discussing what is really best for patients, we turn our gaze to a language of rights and probability calculation, which overshadows the urgency of difficult conversations.

References

47

References 1. Mukherjee S. The Emperor of All Maladies: A Biography of Cancer. 4. ed. New York: Scribner Book Company; 2011. 2. Council of Europe. Guide on the decision-making process regarding medical treatment in end-­ of-­life situations. 2014. https://rm.coe.int/168039e8c5. Accessed 05 Nov 2022. 3. Callahan D.  What Kind of Life: The Limits of Medical Progress. New  York: Simon & Schuster; 1990. 4. Schneiderman LJ, Jecker NS. Wrong Medicine: Doctors, Patients, and Futile Treatment. 2. ed. Baltimore: Johns Hopkins University Press; 2011. 5. Sá ACM.  Obstinação Terapêutica em Doentes Terminais. 2014. 36f. Artigo de Revisão (Mestrado Integrado em Medicina) – Faculdade de Medicina, Universidade de Coimbra, 2014. 6. Vilhena RRVSM. Cuidados Paliativos e Obstinação Terapêutica: Decisões em Fim de Vida. 2013. 76f. Dissertação (Mestrado)  – Programa de Pós-Graduação em Cuidados Paliativos, Instituto de Ciências da Saúde, Universidade Católica Portuguesa, Lisboa, 2013. p. 8. 7. Tonelli MA.  The Philosophical Limits of Evidence-Based Medicine. Academic Medicine. 1998;73:1234–1240. 8. Amundsen DW. The Physician’s Obligation to Prolong Life: A Medical Duty without Classical Roots. Hasting Center Report. 1978;8:23–30. 9. Veatch RM. A Theory of Medical Ethics. New York: Basic Books; 1981. p. 164. 10. Callahan D.  The Troubled Dream of Life: In Search of a Peaceful Death. Washington: Georgetown University Press; 2000. 11. Gawande A. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books – Henry Holt Company, 2014. 12. Pereira AGD. Valor do Consentimento num Estado Terminal. In: Ascensão JO, coord. Estudos de Direito da Bioética. Coimbra: Almedina; 2012. p. 39. 13. Brasil. Conselho Federal de Medicina. Resolução n. 2.217, de 2018. Aprova o Código de Ética Médica. Diário Oficial da União. Brasília. 2018. https://anamt.org.br/portal/wp-­content/ uploads/2018/11/resolucao_cfm_n_22172018.pdf (2018). Accessed 05 Nov 2022. 14. Brasil. Conselho Federal de Medicina. Resolução n. 1.805, de 2006. Na fase terminal de enfermidades graves e incuráveis é permitido ao médico limitar ou suspender procedimentos e tratamentos que prolonguem a vida do doente... Diário Oficial da União, Brasília, 28 nov. 2006. http://www.portalmedico.org.br/resolucoes/cfm/2007/111_2007.htm (2006). Accessed 12 Mar 2018. 15. Dadalto L, Savoi C. Distanásia: Entre o Real e o Ideal. In: Godinho AM, Leite GS, Dadalto L.  Tratado Brasileiro sobre Direito Fundamental à Morte Digna. São Paulo: Almedina; 2017. p. 164. 16. Macklin R. Enemies of Patients. New York: Oxford University Press; 1993. p. 168. 17. Lantos JD, Singer PA, Walker RM, Gramelspacher GP, Shapiro GR, Sanchez-Gonzalez MA et al. The illusion of futility in clinical practice. Am J Med. 1989;87:81–84. 18. Koch T. The Limits of Principles: Deciding Who Lives and What Dies. Westport: Praeger; 1998. 19. Rubenstein EB.  Medical futility and appropriate medical care in patients whose death is thought to be imminent. Supportive Care in Cancer. 1997;5:274–280. 20. Gallagher C, Bennet A.  Medical Futility in Cancer Care: Distinct Challenges and Action Strategies. J Clin Res Bioeth. 2016;7:269. https://doi.org/10.4172/2155-­9627.1000269 21. Gordon EJ, Daugherty CK. ‘Hitting You Over the Head’: Oncologists’ Disclosure of Prognosis to Advanced Cancer Patients. Bioethics. 2003;17:142–168. 22. Davis C, Naci H, Gurpinar E, Poplavska E, Pinto A, Aggarwal A. Availability of evidence of benefits on overall survival and quality of life of cancer drugs approved by European Medicines Agency: retrospective cohort study of drug approvals 2009–13. BMJ. 2017;359:j4530. https:// doi.org/10.1136/bmj.j4530 23. Prasad V. Do cancer drugs improve survival or quality of life?. BMJ. 2017;359:j4528. https:// doi.org/10.1136/bmj.j4528

48

3  A Right to Health or a Right to Hope?

24. Prasad V. Malignant: How Bad Policy and Bad Evidence Harm People with Cancer. Baltimore: Johns Hopkins University Press; 2020. 25. Buiting HM, Rurup ML, Wijsbek H, van Zuylen L, den Hartogh G.  Understanding provision of chemotherapy to patients with end stage cancer: qualitative interview study. BMJ. 2011;342:d1933. https://doi.org/10.1136/bmj.d1933 26. The Economist. A better way to care for the dying. 2017. https://www.economist.com/ international/2017/04/29/a-­better-­way-­to-­care-­for-­the-­dying. Accessed 30 May 2018. 27. Brasil. Ministério da Saúde. Instituto Nacional do Câncer. Rede Câncer. Até quando insister? https://www.inca.gov.br/sites/ufu.sti.inca.local/files//media/document//book-­redecancer-­ ed50-­12-­debate.pdf (2022). Accessed 18 Sept 2022. 28. Tratamentos alternativos contra o câncer dobram chance de morte, diz estudo. Portal UOL. 2017. https://noticias.uol.com.br/saude/ultimas-­noticias/redacao/2017/08/17/ tratamentos-­alternativos-­contra-­o-­cancer-­dobram-­chance-­de-­morte-­diz-­estudo.htm. Accessed 22 Aug 2018. 29. Dalle E. I have just weeks to live. Here’s what I want to pass on. The Guardian. 2020. https:// amp-­theguardian-­com.cdn.ampproject.org/c/s/amp.theguardian.com/commentisfree/2020/ sep/07/terminal-­cancer-­live-­cancer-­life-­death. Accessed 07 Sept 2021. 30. Nagel T. Mortal Questions. Cambridge: Cambridge University Press; 1979. p. 2. 31. Hart HLA. O conceito de direito. São Paulo: Martins Fontes; 2009. p. 248. 32. Weeks JC, Catalano PJ, Cronin A, et  al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012;367(17):1616–1625. https://doi.org/10.1056/ NEJMoa1204410 33. Kalanithi P. When Breath Becomes Air. New York: Random House; 2016. 34. Marcel G. Homo Viator: Introduction to the Metaphysic of Hope. South Bend: St. Augustines Press; 1962. 35. Waterworth JM. A Philosophical Analysis of Hope. Basingstoke: Palgrave-Macmillan; 2003. 36. Silva EG. Fenomenologia da metafísica do ser e do ter: contribuições do pensamento filosófico de Gabriel Marcel para a educação numa perspectiva da formação humana. 409p. 2014. Tese (doutorado)  – Programa de Pós-Graduação em Educação, Universidade Federal de Pernambuco, Recife, 2014. p. 287. 37. Hernandez JG. Gabriel Marcel’s Ethics of Hope: Evil, God and Virtue. London: Bloomsbury Academic; 2011. 38. Spinoza B. Ética. Tradução de Tomaz Tadeu. Belo Horizonte: Autêntica; 2009. 39. Pieper J. Faith, Hope, Love. San Francisco: Ignatius Press; 1997. 40. Nuland SB. How We Die: Reflections of Life’s Final Chapter. New York: Vintage; 1994. 41. Bobbio M.  O Doente Imaginado: Os Riscos de uma Medicina sem Limites. Tradução de Mônica Gonçalves. São Paulo: Bamboo Editorial; 2016. p. 218. 42. Groopman JE. The Anatomy of Hope. How people prevail in the face of illness. New York: Random House, 2004. 43. Wise PH. Cancer, Drugs Survival, and Ethics. BMJ talk medicine. 2016;355:i5792. https://doi. org/10.1136/bmj.i5792 44. Pondé N, de Azambuja E, Ades F. Phosphoethanolamine and the danger of unproven drugs. Ecancermedicalscience. 2016;10:681. https://doi.org/10.3332/ecancer.2016.681 45. Barros DM. A cura do câncer e a ignorância dos juízes. Estadão. 2015. http://emais.estadao. com.br/blogs/daniel-­martins-­de-­barros/a-­cura-­do-­cancer-­e-­a-­ignorancia-­dos-­juizes/. Accessed 10 Jul 2018. 46. Christakis NA, Lamont EB. Extent and determinants of error in doctors’ prognoses in terminally ill patients: prospective cohort study. BMJ. 2000;320:469–473. 47. Wise PH.  Cancer drugs, survival, and ethics. BMJ. 2016;355:1–4. https://doi.org/10.1136/ bmj.i5792 48. DeMartini J, Fenton JJ, Epstein R, et al. Patients’ Hopes for Advanced Cancer Treatment. J Pain Symptom Manage. 2019;57:57–63.e2. https://doi.org/10.1016/j.jpainsymman.2018.09.014 49. Saracci R. An Ethical Dilemma. BMJ. 1997;314:1400–1409.

References

49

50. McKeown, Thomas. The Role of Medicine: Dream, Mirage, or Nemesis. New Jersey: Princeton University Press; 1979. p. 190. 51. Bobbio N. A Era dos Direitos. Tradução de Carlos Nelson Coutinho. Rio de Janeiro: Elsevier; 2004. p. 18. 52. United Nations. Office of the United Nations High Commissioner for Human Rights. Vienna Declaration and Programme of Action adopted at the World Conference on Human Rights: Health and Human Rights Publication Series. https://documents-­dds-­ny.un.org/doc/UNDOC/ GEN/G93/142/33/PDF/G9314233.pdf?OpenElement (1993). Accessed 10 Jul 2018. 53. Alexy R.  Teoria Discursiva do Direito. Organização, tradução e estudo introdutório de Alexandre Travessoni Gomes Trivisonno. Rio de Janeiro: Forense Universitária; 2014. 54. Py L, Oliveira AC. Humanizando o Adeus à Vida. In: Pessini L, Bertachini L. Org. Humanização e Cuidados Paliativos. São Paulo: EDUNISC-Edições Loyola; 2004. p. 137. 55. Alexy R.  La Institucionalización de los Derechos Humanos en el Estado Constitucional Democrático. Derechos y Libertades: Revista del Instituto Bartolomé de Las Casas. 2000;8: 21–41. 56. Alexy R. Theorie der Grundrechte. Nachdruck: Suhrkamp Verlag AG; 2008. 57. Araújo CP, Junqueira SRS.  RE 657.718/RG-MG (Tema 500)  – Dever do Estado de fornecer medicamento não registrado pela Anvisa. Revista da Advocacia Pública Federal. 2019;3:409–420. 58. Basil. Supremo Tribunal Federal. Informativo n. 826, de 16 a 20 de maio de 2016. http://www. stf.jus.br/arquivo/informativo/documento/informativo826.htm (2016). Accessed 12 Jan 2018. 59. Brasil. Ministério da Saúde. Secretaria-Executiva do Conselho Nacional em Saúde Comissão Nacional de Ética em Pesquisa. OFÍCIO CIRCULAR N° 1/2021/CONEP/SECNS/MS. http:// conselho.saude.gov.br/images/Programas_de_uso_compassivo_e_acesso_expandido.pdf (2021). Accessed 12 Jul 2021. 60. Gadelha MI. O Papel dos Médicos na Judicialização da Saúde. Revista CEJ. 2014;62:65–70. 61. Ascenção JO, Videira MCAM. “Boas Práticas” e Ética nos Ensaios Clínicos. In: ASCENSÃO, José de Oliveira. (Coord.). Estudos de Direito da Bioética. Coimbra: Almedina; 2012. p. 200. 62. Delgrosso D. Fighting for Your Life in America: A Study of “Right to Try” Laws Throughout the Country St. John’s Law Review. 2018;91. 63. USA. Food and Drug Administration. FDA Fact Sheet - Right to Try. https://www.fda.gov/ media/133864/download. Accessed 12 Jul 2021. 64. Gorsk D. The false hope of “right-to-try” metastasizes to Michigan. Science-Based Medicine. 2014. https://sciencebasedmedicine.org/the-­false-­hope-­of-­right-­to-­try-­metastasizes-­to-­ michigan/ Accessed 12 Jul 2021. 65. Wong CH, Siah KW, Lo AW. Estimation of clinical trial success rates and related parameters. Biostatistics. 2019;20:273–286. 66. Gomollón-Bel F.  Self-assembled helicene columns could confer chiral properties on optoelectronic devices. Chemistry World. 2022. https://www.chemistryworld.com/news/helicene-­ columns-­could-­confer-­chiral-­properties-­on-­optoelectronic-­devices/4016536.article. Accessed 12 Jul 2021. 67. ASH Clinical News. The Realities of “Right to Try”. 2018. https://ashpublications.org/ashclinicalnews/news/4120/The-­Realities-­of-­Right-­to-­Try. Accessed 12 Jul 2021. 68. Gorski D.  As in 2014, “right-to-try” laws continue to metastasize in 2015. Science-Based Medicine. 2015. https://sciencebasedmedicine.org/the-­con-­game-­that-­is-­right-­to-­try-­ legislation-­continues-­to-­metastasize/. Accessed 12 Jul 2021.

Chapter 4

Dignity and Autonomy: No Place for Illusion

Even if theoretical-legal reasons were not sufficient for the absence of an abstract right to hope, mainly in its positive dimension, ethical reasons would be. The foundation of the right to attempt futile and obstinate measures, albeit objectively harmful to the patient’s health, is usually posited on human dignity – that is, recognizing someone’s dignity should include respecting their wishes, even if it is for something that is bad for them. The biggest problem with this statement lies in the concept of dignity itself.

4.1 Dignity In an important book about healthcare, the American bioethicist Norman Daniels claims that what makes health special is its effect on the normal range of opportunities a person has when healthy [1, p. 36]. Within a society that aims to be fair, there is a responsibility in relation to the individual in the sense of ensuring equity of opportunities [1, p. 39], which would therefore justify the very provision of health services. This vision assumes that the way society perceives its members interferes decisively with the types of responsibility it believes it has regarding each one. If Daniels is correct, the social position of each individual, with special attention to their professional achievements, has a central role in defining the rights and obligations that justify solidarity in relation to health. In this sense, concern for the individual would refer more to his/her sense of contributory being than to his/her own condition as a human being. In asserting that the reduction of pain and suffering is not always the effect of health care, Daniels contends that it would be insufficient to explain its importance [1, p. 49]. For him, all possible effects and functions of health on the life of the individual ultimately refer to the central effect on opportunities [1, p. 50]. © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. P. d. Araújo, Palliative Treatment for Advanced Cancer Patients, https://doi.org/10.1007/978-3-031-30776-8_4

51

52

4  Dignity and Autonomy: No Place for Illusion

This reductionist theory relativizes the significance of caring for various groups of patients, including so-called “terminal” patients, suggesting the idea that such care fits better as a mere moral or pious obligation. Above all, it relativizes treating people with dignity. Indeed, this type of vision encourages disregard for the person in order to prioritize the disease and the effects its existence has on the possibilities of the individual, who becomes objectified as sick, losing his/her sense of self, his/her free development of individuality, and dignity. Criticism of this kind of perception does not imply that attention to health should be understood as an end in itself, on the contrary. What should be promoted from the provision of health care is that individuals should be able to achieve their own ends – and not necessarily those of society – and that their dignity be recognized by its mere human nature. Macklin asserts that “no one is likely to contend that human beings should not be treated with respect for their dignity. However, the concept is so vague it is nearly devoid of meaning without further elucidation” [2]. Indeed, the imprecision about what should be considered as dignity allows for different and even contradictory measures under the same name. However, in contrast to Macklin’s conclusion that it is impossible to continue using the expression human dignity, the need is to return to its original concept, which requires the return of a perspective that sees the human being behind the sick person and the distinction between health and vain hope. The second expression of Kant’s categorical imperative states: “Act in such a way that you use humanity, both in yourself and in others, always and simultaneously as an end and never simply as a means” [3, p. 73]. As the philosopher states, “rational beings are therefore all subject to this law which dictates that each of them should never treat themselves or others simply as means, but always simultaneously as ends in themselves” [3, p. 80]. According to Recaséns Siches [4], this imperative, generally taken as a “principle of human dignity,” refers to the individual’s characteristic of having not only ends but ends of his/her own to fulfill, nontransferable and exclusive, which mean he/she must always be treated as a dignified person, and never as a mere means to ends that are foreign or alien to his/her own. Veatch identifies the Kantian principle of humanity as an end in itself through the sacredness of life [5], but these are very different concepts. Dignity can be seen as the highest possible quality of life – one that allows for the highest possible capacity for achieving ends – much more than an extension of biological life at any cost. And there seems no better way to reduce the negative impacts on quality of life, which indirectly result from a mistaken understanding of reality, than to inform, raise awareness, and remind each of us, as humans, that nothing makes us equal more than our mortality. The understanding that death is an expected and natural process facilitates the acceptance of the limits of medicine and of man in the face of its inevitability. Indeed, the certainty that those additional efforts to achieve the unfeasible are in vain can lead to a transition toward new feasible goals.

4.1 Dignity

53

It is held that the hope of an improvement that permits a longer life than that defined by the illness, and so often, the cure can be one of the most important psychic elements of the human being in the final stage of existence. Kübler-Ross states that “if a patient stops expressing hope, it is usually a sign of imminent death” [6]. Indeed, proper understanding of gloomy prognoses invariably interferes with the hope of overcoming the disease. But it must be questioned to what extent it is possible to speak of dignity supposedly being maintained by reinforcing unfounded hope if, regardless of the status informed by doctors and family members, “with the worsening of symptoms and progressive decline in strength, he/she [the patient] clearly perceives that things are moving in the opposite direction to the optimistic prognoses repeated around him/ her” [7]. According to Gordon and Daugherty [8], interviews with oncologists indicate that informing the prognosis and, at the same time, maintaining the hope of patients remains one of the most difficult challenges for these doctors. They illustrate the importance that oncologists place on instilling hope in patients from the anecdote: “Do you know why they put nails in coffins? To keep the oncologists out.” The decision not to truly and honestly share the dimension and finality of an illness with patients invariably takes away their decision regarding what to do with the remaining time. For Ubel [9], “the prognostic information we communicate to patients should be vague enough to include the truth – usually weeks or months – and specific enough to help people plan their lives and deaths. (…) The truth we communicate to patients should help them prepare for the worst while allowing them to hope for the best.” The problem with this phrase is not that it makes the patient believe, in a hypothetical example, that although an overwhelming majority of patients with the same condition as theirs survive less than two years, a small proportion have lived for five years and that they may be in the second group. It is okay to allow the patient to see himself/herself in this minority and make choices based on this belief, as long as he/ she understands how small the chance is. The problem is when you allow the patient to believe that there are people who have been cured or have been alive for decades and that this came about because they underwent certain treatments. As Nuland reminds us, Too often, patients and their families cherish expectations that cannot be met, with the result that death is made all the more difficult by frustration and disappointment with the performance of a medical community that may not be able to do any better – or, worse yet, does no better because it continues to fight long after defeat has become inevitable [10].

If my dignity depends on respecting my capacity to achieve my own ends, I need to be able to know my options and to choose between them. And that is why it is not possible to have dignity within illusion. Certainly, it is important to say that delimiting what are reasonable expectations is not always easy. People who accept futile treatments, not in themselves, but for what they promise (e.g., palliative but highly toxic chemotherapy that provides

54

4  Dignity and Autonomy: No Place for Illusion

survival of two months for someone who wants a cure) because they do not understand that their expectations are unreal should not be confused with people who want the treatment, even if very toxic, aware that they can provide the chance to live only a little longer  – but enough to see a child born or complete a project, for example. Compared only to each other, these situations seem to indicate some kind of need for differentiated legal guardianship. In a general context, however, in which not only diverse aspects of health but also various assets of life are considered, the effort, including financial, that may need to be made in order to reach the exclusive end of the people involved may not be tolerable by the society in question. This does not mean that the value of their lives is relative but that gaining a few days or months more for them to reach a certain goal is. That is why rights regulations need to be objective and, above all, respected.

4.2 Autonomy For Andorno, dignity and autonomy cannot be considered synonymous, especially because the eventual lack of capacity to exercise autonomy – as in the case of children or people with an advanced degree of dementia – does not deprive them of their dignity [11, p. 151]. On the contrary, means of representation are created for these individuals precisely so that the greatest possible respect for their dignity is guaranteed. Dignity is, thus, the answer to the most fundamental questions about why we should respect people’s autonomy, the source from which that autonomy derives. In Bioethics, the principle of autonomy represents a break with the Hippocratic tradition, marked by medical paternalism (I will follow that system of regimen which, according to my ability and judgment, I consider for the benefit of my patients, and abstain from whatever is deleterious and mischievous), which began to be questioned in the 1960s. The concept of beneficence directed the physician to act for the benefit of the patient based on his or her medical judgment. It did not consider the possibility that the patient had the right to choose, including that which might not produce the greatest good in the eyes of medicine, which has been marked by the principle of the sanctity of life since the modern era [12]. Lombard [11, p. 158] claims that the central role of autonomy in health affairs gained prominence with the publication of the first edition of Principles of Biomedical Ethics in the late 1970s. Before that, however, it is worth mentioning the Belmont Report, a document that aimed to summarize the basic ethical principles that should guide biomedical practice, identified by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, established by the National Research Act in 1974, in the United States. Although the text of this document refers in particular to the limits that should guide research involving human beings, its considerations on “respect for persons”

4.2 Autonomy

55

present the outline of the content that would be developed as the principle of autonomy within bioethics since then. According to Part B of the Belmont Report [13], “respect for persons incorporates at least two ethical convictions: first, that individuals should be treated as autonomous agents, and second, that persons with diminished autonomy are entitled to protection.” It is considered that “an autonomous person is an individual capable of deliberation about personal goals and of acting under the direction of such deliberation.” Hence, respecting autonomy means valuing their opinions and choices, refraining from hindering their actions unless they are clearly harmful to others. An important aspect highlighted in the Belmont Report refers to the forms of disrespecting an individual’s autonomy, which can happen either by rejecting his/ her judgments or his/her freedom to act on them, or by depriving him/her of the information necessary for these judgments to be effectively carried out, without there being reasons to do so. In the UNESCO Universal Declaration on Bioethics and Human Rights, adopted by acclamation in 2005, one can see that the concept revisits the foundations laid in the 1970s [14]: Article 5 – Autonomy and Individual Responsibility The autonomy of persons to make decisions, while taking responsibility for those decisions and respecting the autonomy of others, is to be respected. For persons who are not capable of exercising autonomy, special measures are to be taken to protect their rights and interests.

The World Medical Association, WMA International Code of Medical Ethics, adopted by the 3rd General Assembly of the World Medical Association, London, England, in October 1949, and last revised by the 73rd WMA General Assembly, Berlin, Germany, in October 2022, ensures that [15] 15. The physician must respect the patient’s right to be informed in every phase of the care process. The physician must obtain the patient’s voluntary informed consent prior to any medical care provided, ensuring that the patient receives and understands the information needed to make an independent, informed decision about the proposed care. The physician must respect the patient’s decision to withhold or withdraw consent at any time and for any reason. 16. When a patient has substantially limited, underdeveloped, impaired, or fluctuating decision-making capacity, the physician must involve the patient as much as possible in medical decisions. In addition, the physician must work with the patient’s trusted representative, if available, to make decisions in keeping with the patient’s preferences, when those are known or can reasonably be inferred. When the patient’s preferences cannot be determined, the physician must make decisions in the patient’s best interests. All decisions must be made in keeping with the principles set forth in this Code. (...) 21. The physician must ensure accurate and timely medical documentation

Although many have written on the subject since the first edition of the principled ethics of Beauchamp and Childress, the work remains the most widely used reference for understanding the concept of autonomy. For the authors, autonomy refers to self-determination free from outside interference and limitations that prevent a meaningful choice, as occurs in the face of inadequate understanding [16, p. 101].

56

4  Dignity and Autonomy: No Place for Illusion

4.2.1 Free and Informed Consent as the Main Corollary of Autonomy Elevating free and informed consent to the main corollary of autonomy may cause discomfort. In fact, consent is perceived, especially in medical practice, as a mere registration document, a simple formality required for a certain action to be taken. It is common for patients to sign a self-styled informed consent form, stating that they are aware of all the possible risks of surgeries and procedures, without ever having heard a word from the doctor about what is written there. But it is not an A4 sheet full of clauses that people talk about when they stress the importance of consent. It is, in fact, a process that begins long before its documentary record, in which doctor and patient discuss therapeutic options and, only if duly informed and knowing their options, the patient freely chooses whether or not to undergo medical treatment. Roscoe and Schenck [17] provide a good summary of the elements necessary for this process to take place: 1. The patient must possess the medical competence to understand and follow the standard consent process. 2. The patient acts in a totally voluntary manner. 3. The form and process of consent must contain a full exposition of all aspects of the procedure to which the patient consents. 4. The doctor needs to make a recommendation about what he honestly believes is the best treatment option (including the option not to treat) for the specific patient. 5. The patient needs to have an understanding of what has been communicated and recommended. 6. The patient makes a conscious decision. 7. The patient or his/her legal representative formalizes the decision by means of an authorization. The requirement of free and informed consent was established in the Nuremberg Code (1947), standardized in the Declaration of Helsinki (1964) and replicated in Codes of Medical Ethics and normative devices. This requirement crystallizes the process of resignification of the patient’s role in the doctor-patient relationship, positioning his/her autonomous manifestation as an essential requirement for a procedure to be considered ethical and lawful [18], as opposed to the reality established until then, in which the patient was merely the passive subject of a relationship determined by the medical authority. Beauchamp and Childress explain that, initially, informed consent was primarily a way to minimize the potential for harm, especially linked to research with human subjects. Since the 1970s, however, its fundamental justification is to protect the individual’s autonomous [16, p. 101] choice, in any decision-making process related to medical issues, notably regarding major treatments and interventions.

4.2 Autonomy

57

A European Consultation on the Rights of Patients/WHO, dated March 30, 1994, contains the following in provision 2.2 [19]: Patients have the right to be fully informed about their health status, including the medical facts about their condition; about the proposed medical procedures, together with the potential risks and benefits of each procedure; about alternatives to the proposed procedures, including the effect of non-treatment; and about the diagnosis, prognosis and progress of treatment.

It is worth highlighting the need for information on the effect of not starting any treatment, something especially relevant in end-of-life situations. Contrary to what the significant majority of people believe, not starting treatment for their illness often does not mean giving up a chance of survival and is the best option in the specific case. Although the signing of the consent form is referred to as an ethical obligation, it is noted that the Brazilian Society of Clinical Oncology, for instance, recommends “that clinical oncologists advise all their patients to read carefully and sign the informed consent form before indicating a cancer treatment or performing any procedure during medical follow-up” [20]. In the suggested form, the patient acknowledges having received all necessary explanations, in clear and accessible language, regarding the pathology(s), risks, proposed treatment, its risks, benefits, side effects, prognosis, treatment alternatives, as well as being informed about the risks and/or benefits of not taking any therapeutic action in view of the nature of the disease(s) diagnosed.

Once again, risks and benefits of not taking therapeutic actions are highlighted. It deserves mentioning the 2018 Guidance issued by the UK Chemotherapy Board on consent for Systemic Anti-Cancer Therapy (SACT) [21], which says that Although written consent is not required in law, it is generally accepted that the prescription of SACT is best supported by written consent following a full discussion of the intended benefits and the associated risks. The signing of a consent form indicates that a process has taken place. It does not, necessarily, indicate that the patient has full comprehension of the treatment procedures, aims and complications. Completion of a consent form must, therefore, be complemented by contemporaneous records within the patient notes of discussions which have been held.

The document brings together an example of a national SACT, and it is interesting to note the sample statement from the doctor that he has explained the procedure/treatment to the patient, in particular having explained the intended benefits, being them: • Curative (to give the best possible chance of being cured) • Disease control/palliative (The aim is not to cure but to control or shrink the disease. The aim is to improve both quality of life and survival.) • Adjuvant (therapy given after surgery to reduce the risk of cancer coming back) • Neo-adjuvant (therapy given before surgery/radiotherapy to shrink the cancer, allow radical treatment, and reduce the risk of cancer coming back)

58

4  Dignity and Autonomy: No Place for Illusion

Wise points out that patients with metastatic or other incurable cancers of all types may possibly live two or three years, regardless of treatment, which casts doubt on the existence of any benefit from it [22]. In addition, there will always be the so-called points outside the curve, a few patients with very poor prognoses who live much longer than expected, without science being able to explain why and without any causal relationship traceable to the treatment performed [23]. The way the doctor relays information to the patient can be – and usually is – a determining factor in the decision that will be made. There are very different ways of telling truths, but the doctor can induce a patient to submit or not to a certain treatment depending on the way he or she presents data and information. If the patient hears that a certain treatment increased survival by 50%, for example, he or she is likely to decide to undergo it. But they may change their minds if they realize that this same percentage is equivalent to two or three weeks, especially in a life with more physical suffering. Similarly, supposedly beneficial imaging test results, for instance, can make patients opt to continue a therapeutic option, even if it is of no benefit to the patient. For Veatch, the patient’s right to self-determination depends on the information needed to make an informed decision [24, p. 140]. However, he argues that this does not mean that consent must be fully informed, since telling the patient everything about a treatment would be an impossible task [24, p. 140]. This statement leads to different questions, the answers to which are determinant to delimit which autonomy we are willing to preserve. Firstly, it cannot be said that the appropriate standard of free and informed consent, and hence the minimum information sufficient for an informed and truly autonomous decision, has already been achieved, albeit the subject is very little discussed in practical terms. It is necessary to recognize that separating people into competent or not for civil life acts is not enough to evaluate their capacity to understand the complex issues involved in health treatments, for themselves or for their families. This observation requires that we accept that medical paternalism still prevails in most medical decisions and that, for an effective change in this regard, it is not enough to exalt the principle of autonomy as a guide in medical practice; it is necessary to create mechanisms and instruments to make complex conversations genuinely feasible. The capacity required for the manifestation of consent depends on the capacity to understand the material information, judge it in light of its values, understand the result arising from that manifestation, and freely communicate his/her will [25]. This definition, which could also be called discernment, is independent of civil capacity, a previous requirement for the legal feasibility of someone’s consent being confirmed. It is also important that consent is voluntary [16, p. 124], namely, that there is no coercion or any kind of undue external interference, which is, however, inherent to assessing the validity of any act of civil life. Another fundamental aspect refers to the alleged right not to be informed, also as a corollary of the autonomy principle. For the biooethicist Engelhardt, the purpose of free and informed consent is not to obligate patients to be autonomous, but to

4.2 Autonomy

59

enable the exercise of their autonomy in the decision regarding medical treatment, for which reason the right to be informed does not imply an obligation to be informed, nor does it create an absolute obligation to inform upon the physician [26]. It is reasonable to assume that no one can be forced, against their will, to receive information. On the other hand, it is necessary to question whether this refusal should not also extend to the submission to treatments. If consent is required so that the patient can be subjected, especially to invasive interventions and therapies, how can this requirement be suppressed based on the patient’s refusal to even be informed about the disease that afflicts him/her and, especially, the prognosis and effective chances of treatment regarding the disease’s evolution? Veatch states that, according to Hippocratic ethics, the physician should say only those things that will help the patient, withholding that information that will harm him or her. But he recognizes that, in recent decades, there has been a moral change regarding the need to tell the patient the truth [24, p. 143], as a result of the move away from paternalistic ethics and greater respect for autonomy. Nonetheless, studies show that many physicians report great difficulty in accurately informing patients of their prognoses, for fear of what the truth might do emotionally or psychologically. Although this stance is not supported by the available evidence, which shows that there are no indications that telling the truth to the patient will harm him or her, on the contrary, individually considered circumstances may indicate the need to respect the patient’s will to receive information in a partial manner [27, 28]. What is necessary to discuss, however, is how much this interferes with the patient’s likelihood of submitting or not to certain types of treatment, since, in principle, there is no flexibilization in the obligation of consent. It is important to register, in any case, that under no interpretation of the principle of autonomy does the doctor’s honesty with the patient require that all information be given coolly and immediately. Rather, it is precisely the philosophy of care to provide gradual and sensitive information, so that the patient always feels sheltered and is able to understand and accept what is being said to him/her about his/her health status. The most important thing in this context seems to be to find ways to maintain the greatest possible benefit to the patient while also maintaining as much of the patient’s autonomy as possible. We should try to find objective criteria to do this, but not all patients will receive the same amount of information at the same time, and this doesn’t mean that we are giving up the essentiality of autonomy. It just means that it is not a static concept that is equally applicable in all situations. It is also important to say that even in cases where people have great difficulty in grasping concepts and new situations, the understanding necessary to make an informed decision can be achieved. For Beauchamp and Childress, Professionals may be able to communicate novel or specialized information to laypersons by drawing analogies between this information and more ordinary events familiar to the patient or subject. Similarly, professionals can express risks in both numeric and nonnumeric possibilities, while helping the patient or subject to assign meanings to the probabili-

60

4  Dignity and Autonomy: No Place for Illusion ties through comparison with more familiar risks and prior experiences, such as risks involved in driving automobiles or using power tools [16], pp. 132–133.

Undoubtedly, appropriate communication tools can be developed that minimize the effects of preexisting lack of cognition, but for this to effectively happen, it is necessary to first recognize that this is a problem that will affect a large proportion of patients. In addition, it is necessary to recognize that many people will not be in the least bit equipped to understand the risks and possible benefits of medical treatment in any given case and to define how this can be identified and how to proceed in such cases, without the decision unduly suppressing the consent of the patient or his or her representative.

4.2.2 The Era of the Shared Decision The centrality of the principle of autonomy in medical decisions has meant that, in recent decades, a more balanced perspective between physician and patient participation in these decisions has been sought, especially when it comes to end-of-life care. According to Andorno, The normative status of this relationship is one in which clinicians and patients are on a more equal footing, and who are working together to help eachother identify the best course of action for the patient. This new model is based upon a recognition of the shared humanity of doctors and patients, as well as the awareness that the patient has the last word in decision-­making processes regarding their treatment and care. Today, patients are entitled to decide what treatments they do or they do not wish to receive according to their preferences and values. This trend is visible in the modern legal requirement that the patient provide free and informed consent for any medical intervention, and in the explicit recognition of a patients’ right to refuse treatments, for instance, through advance directives [11, p. 152].

This new perspective, called shared decision-making, is first mentioned in the 1980s and may be defined as “an approach where clinicians and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options, to achieve informed preferences” [29]. It is, therefore, the abandonment of the paternalistic model, in which doctors made decisions for patients according to their own convictions. In 2010, the Salzburg Statement on Shared Decision Making arised out of the Salzburg Global Seminar, which was attended by members from 18 countries, including health-care professionals and patients. The document lists commitments that must be assumed by physicians and patients. For the former, these include encouraging patients to express their personal preferences; providing accurate information about options and the uncertainties, benefits, and harms of treatment; and allowing them sufficient time to consider their options. For patients, it is important to recognize that they have a right to be equal participants in their care.

4.3  The Impact of Information on Patients at the End of Life

61

Especially in the digital age, where the access of a large part of patients to technological novelties is a reality to be considered when discussing medical treatments, the role of health professionals who assist them is fundamental. The transition from the era of medical paternalism to a culture of shared decision-­ making with the patient does not mean the physician’s renunciation of a duty to decide. It is rather the recognition that, since it is not a decision that falls exclusively to him/her, the information needs to be provided as completely as possible to the patient, so that he/she can make a truly informed decision. Patients need to be able to understand their diagnosis and, especially, their prognosis, as well as to understand the effective purpose of each therapeutic proposal. The physician, under the justification of not deciding for the patient anymore, cannot abdicate the responsibility of deciding with the patient, which involves helping him/her to understand, using plain language, the medical issues that involve his/her health situation. No longer being exclusively responsible for the choice cannot mean leaving the patient to his or her own devices to make choices. As such, the choice needs to be preceded by an effective communicative process, which essentially depends on the medical role. Thus, shared decision-making is applicable to most clinical decisions and that it is especially important when scientific evidence does not strongly support a clear treatment option, in which case the decision may be strongly influenced by patient preferences and values. The notion of patient autonomy does not exist, however, to supplant the principle of beneficence. On the contrary, it is a matter of moving away from medical paternalism toward a decision-making process that relies on the patient’s participation and self-determination in choosing an appropriate medical treatment plan choosing from reasonable therapeutic options and not any available technology [30]. As Schneiderman and Jecker state, although autonomy was a necessary corrective principle for medicine, it does not mean that patients are entitled to anything they want. And therefore, most bioethicists recognize that patients have the right to choose only among medically appropriate options [31].

4.3 The Impact of Information on Patients at the End of Life Accurate and complete information is essential to the exercise of patient autonomy [32], especially those at the end of life. Therefore, the more serious the illness, the more rigorous the information provided should be. Accordingly, even if “psychology is used” to perform this task, this cannot mean the minimization of reality and, consequently, of the right to self-­ determination of the patient [33]. In questioning whether information can be conveyed without destroying all hope, Wanzer et al. believe that even patients with a poor prognosis or terminal illness should know the truth, and a decision not to tell the patient the truth because of a fear of their inability to cope with the information is not justifiable.

62

4  Dignity and Autonomy: No Place for Illusion

Moreover, the anxiety of dealing with the unknown can be much worse than dealing with the truth, however tragic, leaving the patient in isolation [34]. Thus, When the prognosis is bad, the physician must help the terminally ill patient understand and deal with the prognosis and alternatives for treatment without destroying all hope. This can be done by reassuring the patient that he or she will not be abandoned and by emphasizing the positive measures that can be used for support [34].

In her book The Art of Dying Well [35], the American author Katy Butler, an advocate of the so-called good death – which I prefer to call better life until the end – recalls that some people get angry when doctors deliver bad news bluntly. But “consider the alternative,” she says. And she tells the story of a nurse who said she had come across a surprising numbers of patients with devastating symptoms of stage IV cancer who had learned they were dying from an emergency room physician who didn’t even know them. They were shocked by the news and were sent home to die in palliative care, making it unlikely that they would ever again see or say goodbye to the oncologists with whom they had developed a trusting relationship. As previously stated, existing scientific evidence does not support the idea that communication about end-of-life issues increases patient anxiety or hopelessness –although it should always be said that hope is not a unison concept and that false hopes (illusions) should never be entertained [27]. It is undeniable that patients with life-threatening diseases need doctors with excellent communication skills, which are hard to find [36]. These skills are not a fluke in medical life, as if it were a kind of musical aptitude. On the contrary, it is an essential aspect in specialties such as oncology, which can interfere more in the lives of patients than the very decision to treat or not to treat and therefore requires appropriate study, inclusion in the curriculum and specific training. According to Murray et al., “there are many well validated guides to help clinicians to explore people’s understanding, share individualized information, respond to emotions and acknowledge loss so that care is tailored to each person’s needs and priorities.” The authors note that explaining the uncertainties inherent in life-­limiting illness requires ongoing discussions about what can happen and what can help [37]. Unfortunately, however, doctors often prefer to wait for patients to bring up issues about the end of life, while patients often wait for the doctor to do so. As a result, conversations are delayed until the disease progresses, and this delays the onset of palliative care and generates inappropriate interventions. The authors explain that physicians feel uncomfortable with the uncertain nature inherent in the prognosis and are unable to meet the predictive desires of patients [38]. Limited by the deficiency of expression, doctors and patients, wrapped up in futile treatments, feed an unfounded hope that hovers in the air until the body’s failure, by itself, forces its expulsion.

References

63

References 1. Daniels N.  Just Health: Meeting Health Needs Fairly. Cambridge: Cambridge University Press; 1985. 2. Macklin, R.  Double Standards in Medical Research in Developing Countries. Cambridge: Cambridge University Press, 2004. p. 196. 3. Kant I.  Fundamentação da metafísica dos costumes. Tradução de Paulo Quintela. Lisboa: Edições 70; 2009. 4. Siches LR. Tratado General de Filosofia del Derecho. 4. ed. México: Porrua, 1970. p. 548. 5. Veatch RM. A Theory of Medical Ethics. New York: Basic Books; 1981. p. 234. 6. Kübler-Ross E. Sobre a Morte e o Morrer: O que os Doentes Terminais Têm Para Ensinar a Médicos, Enfermeiras, Religiosos e aos seus Próprios Parentes. Tradução de Paulo Menezes. 9. ed. São Paulo: WMF Martins Fontes; 2017. p. 144–145. 7. Varella D. Por um Fio. São Paulo: Companhia das Letras; 2004. p. 119. 8. Gordon EJ, Daugherty CK. ‘Hitting You Over the Head’: Oncologists’ Disclosure of Prognosis to Advanced Cancer Patients. Bioethics. 2003;17:142–168. 9. Ubel PA. Truth in the most optimistic way. Ann Intern Med. 2001;134:1142–1143. https://doi. org/10.7326/0003-­4819-­134-­12-­200106190-­00015. 10. Nuland SB.  How We Die: Reflections of Life’s Final Chapter. New  York: Vintage; 1994. p. 142–143. 11. Andorno R. Dignity. In: Emmerich N, Mallia P, Gordijn B, Pistoia F. Contemporary European Perspective on the Ethics of end of life care. Springer Nature: Switzerland; 2020. 12. Amundsen DW. The physician’s obligation to prolong life: a medical duty without classical roots. Hastings Cent Rep. 1978;8:23–30. 13. The Belmont Report. Ethical Principles and Guidelines for the Protection of Human Subjects of Research. 1979. https://www.hhs.gov/ohrp/regulations-­and-­policy/belmont-­report/read-­ the-­belmont-­report/index.html. Accessed 26 Apr 2021. 14. UNESCO.  Universal Declaration on Bioethics and Human Rights. 2005. https://en.unesco. org/about-­us/legal-­affairs/universal-­declaration-­bioethics-­and-­human-­rights. Accessed 26 Apr 2021. 15. World Medical Association. WMA International Code of Medical Ethic. 2022.Shttps://www. wma.net/policies-­post/wma-­international-­code-­of-­medical-­ethics/. Accessed 26 Apr 2021. 16. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. New York: Oxford University Press; 2009. 17. Roscoe LA, Schenck DP. Communication and Bioethics at the end of life. Springer Cham; 2017. p. 147. 18. Dadalto L. Bioética e Diretivas Antecipadas de Vontade. Curitiba: Prismas, 2014. p. 17. 19. World Health Organization. European Consultation on the Rights of Patients. Amsterdam 28 30 March 1994. 1994. http://www.nurs.uoa.gr/fileadmin/nurs.uoa.gr/uploads/Nomothesia_ Nosilefton/Evropaika_keimena/eu_declaration1994_1_.pdf#:~:text=The%20European%20 Consultation%20on%20the%20Rights%20of%20Patients%2C,health%20care%20 reform%20process%20underway%20in%20most%20countries. Accessed 26 Apr 2021. 20. Sociedade Brasileira De Oncologia Clínica. Termo de Consentimento. https://www.sboc.org. br/termo-­de-­consentimento. 2017. Accessed 22 Apr 2018. 21. UK Chemotherapy Board. Consent for Systemic Anti-Cancer Therapy (SACT). https://www. cancerresearchuk.org/sites/default/files/consent_guidance_doc_v2018-­06.pdf Accessed 22 Apr 2020. 22. Wise PH. Cancer, Drugs Survival, and Ethics. BMJ 2016;355:i5792. https://doi.org/10.1136/ bmj.i5792 23. Araújo CP. Existe direito à esperança? Rio de Janeiro: Lumen Juris; 2020. 24. Veatch RM. The Basics of Bioethics. New York: Routledge. 25. Dadalto L. Testamento Vital. Indaiatuba: Editora Foco; 2020. p. 27.

64

4  Dignity and Autonomy: No Place for Illusion

26. Engelhardt Jr HT.  The Foundations of Bioethics. New  York: Oxford University Press, 1996. p. 316. 27. Bernacki RE, Block SD; American College of Physicians High Value Care Task Force. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med. 2014;174(12):1994–2003. https://doi.org/10.1001/jamainternmed.2014.5271 28. Buton PN, Tattersall MHN, Stockler M. Discussing prognosis and communicatuon risk. In: Kissane DW, Bultz BD, Butow PN, Bylund CL, Noble S, Wilkinson S. Oxford Textbook of Communication in Oncology and Palliative Care. 2nd ed. Oxford: Oxford University Press; 2017. p. 78. 29. Glwyn G, Coulter A, Laitner S, Walker E, Watson P, Thomson R. Implementing shared decision making in the NHS. BMJ. 2010;341:c5146. https://doi.org/10.1136/bmj.c5146 30. Macklin R. Enemies of Patients. New York: Oxford University Press, 1993. p. 166. 31. Schneiderman LJ, Jecker NS. Wrong Medicine: Doctors, Patients, and Futile Treatment. 2. ed. Baltimore: Johns Hopkins University Press; 2011. p. 82. 32. Abel EK. Prelude to Hospice. Florence Wald, Dying People, and their Families. New Jersey: Rutgers University Press; 2018. p. 113 33. Pereira AGD. Direito dos Pacientes e Responsabilidade Médica. 2012. 879f. Tese (Doutorado em Ciências Jurídico-Civilistas) – Faculdade de Direito, Universidade de Coimbra, 2012. 34. Wanzer SH. et  al. The Physician’s Responsibility Toward Hopelessly ill Patients. The New England Journal of Medicine. 2016;310:955-959. 35. Butler K. The Art of Dying Well: A Practical Guide to a Good End of Life. New York: Scribner; 2019. p. 84. 36. Back AL, Arnold RM, Baile WF, et al. Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Arch Intern Med. 2007;167(5):453–460. https://doi.org/10.1001/archinte.167.5.453 37. Murray SA, Kendall M, Mitchell G, Moine S, Amblàs-Novellas J, Boyd K. Palliative care from diagnosis to death. BMJ. 2017;356:j878. https://doi.org/10.1136/bmj.j878 38. Barclay S, Maher J. Having the difficult conversations about the end of life. BMJ 2010; 341. https://doi.org/10.1136/bmj.c4862

Chapter 5

Difficult Conversations

The importance of a precise understanding of their prognosis interferes decisively in the autonomy of patients – or, in cases of vulnerability, their legal guardians – to decide on the treatment they want to undergo. According to Temel et  al. [1], “patients who misunderstand the expected outcomes of cancer therapy may elect for treatments they would have otherwise declined”. While it may be assumed that someone would hardly refuse to go through a treatment that imposes pain and suffering if the likely outcome were a better and longer life, the same cannot be said of those who submit themselves to pain for minimal or unlikely benefit. Studies have shown that patients with advanced cancer have a mistaken understanding of the purpose of palliative treatments, believing in a curative effect they do not possess, as well as overestimating the degree of survival [2]. Wise [3] recalls that Patients overestimate potential drug benefits. In an important multicenter study, almost 75% of 1200 patients with metastatic colorectal and lung cancers considered it likely that their cancers would be cured by chemotherapy. Yet a cure in these situations is virtually unknown. In another study of decision making discussions about chemotherapy between doctors and patients, survival issues were considered to have been properly covered in only 30%. Dutch and Australian studies have found that the option of supportive care is raised in only one quarter of oncologist consultations, probably because of patient and family expectations of active treatment.

Indeed, to understand the prevalence of dissonance between patients’ expectations and the effective possibilities of the treatments they undergo, a national and wide ranging prospective cohort study was carried out based on data from the Cancer Care Outcomes Research and Surveillance Consortium (CanCORS) [4]. Results confirmed conclusions from previous studies, demonstrating that 69% of lung cancer patients and 81% of colorectal cancer patients who participated in the

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. P. d. Araújo, Palliative Treatment for Advanced Cancer Patients, https://doi.org/10.1007/978-3-031-30776-8_5

65

66

5  Difficult Conversations

research “did not report understanding that chemotherapy was not at all likely to cure their cancer” [5]. Another randomized study of early palliative care addressed patients’ perceptions about prognosis and treatment objectives in cases of metastatic patients with non-small cell lung cancer – still considered an incurable disease that causes significant morbidity and has a high symptom burden, despite novel therapies. It was shown that, despite their terminal cancer diagnosis, one third of patients participating in the study stated, at its beginning, that their cancer was curable and most – even when they recognized that their cancer was not curable  – stated that the objective of the treatment was to “get rid of the cancer” [1]. It was concluded that this misperception of most patients not only puts them at risk of making inadequate choices for their health, leading them to opt for futile therapies at the end of life. Temel et al. [1] also noted that “even when presented with accurate information about their diagnoses, patients with advanced cancer frequently retain inaccurate perceptions of their illness,” highlighting previous study that showed that all participating patients believed their cancer was curable despite reviewing educational materials that explicitly stated the opposite. Simply put, it is from a good understanding of what medical treatments can and cannot do for us – and not just for our diseases – that we must begin in order to make decisions about them. And to do this, effective communication by health professionals, especially physicians, is essential. Communication skills should not be perceived as results of experience and subjective elements. It is necessary to really study them seriously along with the potential impact they have on the lives of patients.

5.1 Qualitative Research Carried Out in Brazil and Germany In 2018, I carried out qualitative research at the Hospital das Clínicas of UFMG and at the Hospital Felício Rocho (Belo Horizonte/MG, Brazil) and at Albertinen-­ Krankenhaus (Hamburg, Germany), in the context of my doctoral research, carried out in both countries.1 The study was approved by the Ethics Committees of the Pontifical Catholic University of Minas Gerais (CAAE registration no. 76655317.0.0000.5137, opinion no. 2.560.620). After being informed of the study’s goals, the interviews’ confidentiality and protection of anonymity, as well as the fact that participation in the study was

 The first Annex of this book contains the interview personally conducted with oncologist Mathias Bertram, who authorized the interviews at Albertinen-Krankenhaus. 1

5.1  Qualitative Research Carried Out in Brazil and Germany

67

entirely voluntary and they might discontinue at any moment, participants submitted written informed consent. This multicenter study was developed using the qualitative phenomenological method, with semi-structured, in-depth interviews, with open-ended questions. Interviews with 48 metastatic cancer patients from Brazil and Germany were conducted. Almost all were undergoing chemotherapy – and a few were hoping to start or resume it. My purpose was to find out why these people were undergoing the treatments: whether they understood that they could not be cured or increase their survival much, but were still willing to do anything for a chance to live a little longer, or whether the reason they were undergoing chemotherapy was a mistaken expectation about themselves: the hope of a cure or longevity [6].

5.1.1 No Time to Err: My Present for a Future Modern medicine is increasingly fragmented, focusing on parts of a human being and often harming him or her by failing to locate the person behind the patient. But the physician is not – at least should not be – a mere technician of diseases. And, therefore, the impossibility of a cure or a guarantee of greater longevity should not be seen as a failure. Whatever the outcome of an illness, the primacy of medicine has always been in caring, not in treating. The inversion of this creates a vicious circle between what doctors expect from society and what society expects from doctors. Health systems pay better for “active” interventions and doctors treat more [7]; society receives more treatment and is insufficiently encouraged to value care. The patient is objectified as sick, suppressing the individual who exists despite the disease, with his or her afflictions and concerns. Looking at parts of the patient or mere effects on their organs, instead of the person who exists independently of the disease, doctors are going to use far more technology than science, and reason would recommend. Thinking piecemeal, there will always be something else that could be done, some new technology to be attempted, some therapeutic option, no matter how bad it may be. This context is especially harmful for patients with life-threatening diseases. Studies have already shown that medical specialists, including oncologists, rarely initiate end-of-life discussions during “active” treatments such as chemotherapy [8]. Even if a paternalistic posture is not adopted and a shared decision between doctor and patient is intended, the way the professional explains the options to the patients is preponderant in the decision-making process. Nuland [9] says that there has arisen the conviction among doctors - more than a mere conviction, it is nowadays felt by many to be a responsibility - that should error occur in the treatment of a patient, it must always be on the side of doing more rather than less. Doing more is likely to serve the doctor’s needs rather than the patient’s. The very success of his esoteric therapeutics too

68

5  Difficult Conversations often leads the physician to believe he can do what is beyond his doing and save those who, left to their own unhindered judgement, would choose not to be subjected to his saving.

Indeed, medical training emphasizes actions that reject the principle that it may be better to do less – rather than more – for a patient. But, as Gawande [10] reminds us, equally terrible mistakes can be made when taking the path of doing more than what is appropriate, which can be just as devastating, if not more so, to someone’s life. Studies show that it is common for physicians to find it easier to invest in more technology than to initiate delicate and difficult conversations about the proximity of death with their patients [7]. Hence, they find it very difficult not to propose new treatments or to suggest discontinuing them, “giving nothing” to the patient [11]. They are also reluctant to address the natural outcome of the disease, because they believe they cannot suppress the patients’ hope. This causes end-of-life discussions to be permanently postponed, until it is too late to make a real difference to the patient. Until then, “and when we imagine ourselves to have much more time than we do – our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register” [10]. If the physician takes the stance that pulling back is much more difficult than proposing yet another aggressive treatment [12], then that is how he/she will conduct the conversation with the patient. It is also necessary to recognize that it is utopian to think that the standard patient, even if aided by the norms and correct medical practices, will be well informed enough about the technology offered to know when and how to interrupt it, so as not to enter the universe of therapeutic obstinacy [13]. In this sense, the physician’s role in the conversations about whether or not to insist on treatment will generally be decisive in the patient’s decision. The renowned English neurosurgeon Henry Marsh helps the understanding of this by telling of a 40-year-old man who had fallen off his bicycle without a helmet and suffered a frontal skull fracture. The CT scan painted a very bad picture, and one of the female residents told him, “Well, the family will want something done. It’s their choice.” To which Marsh [14] replied that what the family want would be entirely determined by what she told them: If she said, “We can operate and remove the damaged tissue and maybe he will survive,” they would obviously want us to operate. Instead, if she said, “If we operate, there’s no realistic chance that he’ll ever live an independent life again. He will be left with deep sequelae. Do you think he would want to survive that way?”, the family would probably give an entirely different answer. What she would really be asking is: “Do you love him enough to take care of him, especially if he is incapacitated?”, and in saying this she would give them no choice. In cases like this we often do the surgery, because it is easier than acting honestly, and it means that we can avoid a painful dialogue. You may think that the operation was a success because the patient left the hospital alive, but if you see them years later – as I often do – you will realize that the operation was a human disaster.

5.1  Qualitative Research Carried Out in Brazil and Germany

69

During my interviews, I reflected a lot on how understanding prognosis affects patient priorities. One of the older patients I talked to was very shaken, even though she had known about her diagnosis for over a year. She was emotional when she told me what she thought was the worst part of the disease: “My fingers. I lost the feeling in my fingertips. I used to sew and I can’t do it anymore. It really diminished my will to live.” Would she have insisted on the chemotherapy that had this side effect if she understood what her prognosis was and what the real possible effect of the treatment was on her disease? In possibly the most impacting work recently published on cancer, The Emperor of All Maladies, the Indian-American physician Siddhartha Mukherjee makes the risky comparison between cancer and a concentration camp. The author says that both have the common characteristic of annihilation, by denying the possibility of life outside and beyond themselves. Patient’s daily routine becomes so intensely devoted to his or her illness that the world disappears from view and every last drop of energy is consumed in caring for the cancer [15]. A recurring topic in my conversations with patients was how they occupy their time. And, especially when talking during chemotherapy sessions, I always wondered what those people would be doing if they understood the true purpose of their treatments. Would they be there getting that medicine in their veins, talking to me? I remember two Brazilian patients, who told me exactly the same thing: “I lead a normal life, I don’t live for the disease.” They looked well, ruddy, and cheerful. But I was surprised by what they meant by a normal life. One of them told me that she had chemotherapy every third Monday: “After the session, I spend most of the time sleeping, but everything is fine, and by Friday I am okay.” The other told me that she spent every Friday in the hospital undergoing chemotherapy: “I don’t think about the disease, I go live my life. Monday and Tuesday I sleep all day because I get very tired, but by Wednesday I’m already on track.” They also had in common the fact that the side effects of the treatment prevented them from continuing to work. Both believed that they were in a curative treatment that, at some point, would end. It was a sacrifice but a small sacrifice compared to the imagined result: the cure. A cure that is scientifically improbable or impossible, and for this very reason, unrelated to the treatment. There will always be people who will live (far) beyond their prognosis. But it is one thing to hope for the best for the future; it is another thing to live the present depending on it. The knowledge or ignorance of bad prognosis can make all the difference in how we live our lives – especially the end of them.

70

5  Difficult Conversations

5.1.2 How Do the Misconceptions Happen? The reasons for cancer patients’ misconceptions about what to expect from the evolution of their diseases are certainly varied and what qualitative research can do is to raise hypotheses whose prevalence should be verified in further quantitative studies. It will not always be the doctor’s fault: during my research, I could see that some patients chose to believe their own truths, regardless of what they had been told. And studies have shown that there are patients who have misperceptions about their diagnoses even when presented with accurate information [1]. But in many cases, poor communication between health-care teams is a determining factor in these misunderstandings. If I can make an analogy, it’s more or less what happens when the plane takes off or goes through heavy turbulence. It is common for us to look at the faces of the flight attendants to identify some reason for concern. Our fear will possibly reflect what we find there. We see reality through the eyes of others. If the doctor speaks optimistically about test results that mean little or nothing, the patient will often hear that the treatment is working and thus that they are getting better, will live, and will survive. It cannot be said that the doctor lied, but the truth was distorted into narratives that prevent the difficult conversation about the end of life. The first person I talked to in Brazil told me about his plans for 10 years from now. The patient wanted to finish college, work, get married, and have children. He had been living with cancer since he was a child. Against all expectations, he was still alive. He knew that it was a rare case, but that early death was a real possibility. Despite his sobriety, he was optimistic. He said with great confidence that the treatment he was undergoing had a 19% chance of working. In other words, he believed he had a 19% chance of survival. “It is no longer certain that I will be cured. But it’ s almost 20%. That’s a lot, isn’t it?” It is one thing for a patient to say, in abstract terms, that his/her cancer is curable or not and that treatment may or may not improve his/her health. It is another to say that their chance of living has a number: 19%. Whenever possible, I talked to the doctors. Sometimes, I discussed my research in general, and other times, I talked to them about the patients I had interviewed. In this particular case, I realized that the very specific data referred to a phase II study (experimental) that had shown a 19% chance of response in patients with certain characteristics. Response  This never meant a chance of cure but was taken by the patient to mean exactly that. Misconceptions about percentages, the meaning of “response” to treatment, remission, and test results were frequent. Patients in general have great difficulty in

5.1  Qualitative Research Carried Out in Brazil and Germany

71

understanding the effective benefits that can come from the reduction of tumors or the absence of progression, believing that it is an upward curve of improvement. The hypothesis I present – and which deserves further study – is that it is in terms like this that we find the easiest source of deception in a patient: “your body is reacting to the treatment” is heard as “the drugs are helping you get rid of the cancer” or “you are moving towards a cure.” Another important source of misunderstanding seems to refer to what metastatic cancer really represents. Patients tend to focus on the size and eventual remission of metastasis, as if this were more relevant than its actual existence. Certain patients and the family member of a patient said things like: “it’s just a little metastasis”; “there is a metastasis, but it’s very small.” Events that impede the continuity of chemotherapy, even in the case of long hospitalizations, great pain, and weakness, were usually seen as momentary pauses that are part of a curative treatment and not as the natural course of an incurable disease. One Brazilian patient, with cancer in the intestine, and his wife emphasized that “the treatment should have finished already, but he had to be hospitalized and put off the last part.” I should add that the research I conducted did not compare patients’ expectations in relation to the information provided by the doctor. A parallel in this sense would certainly help to identify what can be improved for more effective communication, as I highlighted in previous works [16]. Actually, it is noticeable that many doctors are aware that their patients do not have an adequate understanding of the prognosis of their disease and the purpose of the treatment to which they are submitted. It is not clear, however, whether they do anything about it to improve communication over the course of treatment. Although it happened with few respondents, an extremely important aspect concerns the inability of many patients to understand complex issues. When approached, one patient said she wanted to talk but needed to finish filling out a form. Along with her sister, she even put her date of birth down as her identity card number because of her confusion about the different data. One way that seemed effective in showing how mistaken a patient’s understanding of his or her condition was entailed asking objective questions about his or her future plans. A German patient with pancreatic cancer demonstrated a good understanding of the severity of his situation, especially due to the type of tumor. He stated in April that he hoped to “reach Christmas.” Then he said: “Christmas is far away; I want to see my next granddaughter born” (in approximately 1 month). Of all the patients I talked to, only he expressly said that his life was coming to an end. Knowing whether or not a patient has long-term plans can be essential to understanding how accurate their understanding of the prognosis is. This is why communication needs to be a tool that is invested in all the time. It is an ongoing process, not an episode. The truth is as necessary as it is dependent on technique and sensitivity, and the patient is not always ready to receive it right away or all at once.

72

5  Difficult Conversations

In fact, providing prognostic information to a patient is not a straightforward process and needs to occur over time [17]. Even if the sick person believes that his/her cancer is curable – when it is not –for example, they may think that there is a small chance that this will happen. If, in the following doctor’s visits, they only hear that the treatment is working and will therefore be maintained, they may possibly think: I am on the way to being cured. This can be corrected by proper communication, which includes, for example, discussions about future plans. A good summary on this is found in the “Oxford Textbook Communication in Oncology and Palliative Care” [18], which remembers health-care workers to always check if patients have actually understood what has been said, inviting them to make questions. They also call attention to the importance of exploring what the information means to patients and their families in the context of their lives, including their plans and how they are coping with the news.

5.1.3 Beyond the Cure: While There Is Chemotherapy, There Is Life? As said before, quantitative studies have already shown that, in not understanding the effective potential of palliative cancer treatments, whose benefits are often – if at all – only marginal, patients with no prognosis of cure minimize the complications of chemotherapy and find it encouraging that something is being done [19]. Not surprisingly, patients on active treatment (palliative chemotherapy) are less likely to understand the terminality of their illness and to discuss end-of-life issues with their physician [20]. This mistaken view of most patients not only puts them at risk of making inappropriate choices for their health but also “has important social implications, as it can lead patients to opt for futile, costly, and expensive therapies at the end of life” [1]. The qualitative study I conducted enables me to suggest that the curability or incurability of their diseases is not enough to understand the mistaken expectations of cancer patients. A significant portion of these people understand that their disease is incurable, but not that the disease will probably kill them, because they believe that the treatment can allow them to live in spite of it. A 58-year-old Brazilian patient I talked to said that she had been treating her breast cancer for 12 years. I began to think that with each year that passes and the patient is still alive, it must become more difficult to understand that this is the disease that will probably lead to her death. She seemed to believe that as long as she stayed on the treatment, she could live as if she didn’t have the disease – until she was 102 years old, she said.

5.1  Qualitative Research Carried Out in Brazil and Germany

73

In a conversation with a very weakened Brazilian patient, unable to receive a new cycle of chemotherapy, her son clearly demonstrated he did not understand the final stage of his mother’s disease and on several occasions said: “because there are terminal patients,” distancing the situation of his mother from the “terminal” patients. In a similar vein, a German patient said that it was very difficult to face patients he knew were terminal, also distancing his situation from that of the others. One German patient was 87 years old. She had been talking for several minutes about her sadness that she could no longer drive and repeatedly said that one of her three daughters had given her license to the police believing that she was no longer able to drive a car. After almost an hour of conversation, her doctor excused himself and entered the room. He said he was looking for her to tell her that she would not be having chemotherapy that day. She became upset and repeated, in desperation: “If I don’t do the chemotherapy I’m going to die! Please let me do it! I am fine! I don’t want to die!” Before the doctor came into the room, this patient had shown me a very nasty sore on her chest. She said it hurts a lot. But when the doctor told her that the treatment had been suspended, she said she was fine. While on treatment, patients believe that something is being done to make them better, and no matter how much their condition declines, they may think that it is merely a temporary effect of a medicine that will ultimately make them live. The mistaken expectation can cause patients to take treatments to their ultimate consequences. Even significant physical pain is minimized by the fear of being prevented from continuing and losing the presumed chance of a cure or many more years or decades of life. In a study conducted in the United States in 2008, only 37% of a population of 332 patients reported having discussed end-of-life issues with their physicians. Patients who reported having these conversation were more likely to desire and receive less-invasive care [21]. It is not surprising that, in a recently published study about chemotherapy at the end of life, 64% of the patients received oncologic treatment during the last month before death [22]. It is also known that many physicians feel unprepared to conduct these conversations and few report having received adequate training to do so [23]. But this can also represent the relentless efforts of oncologists to provide new therapies in the hope that something will work, even when the patient is no longer in the clinical condition to receive them. For some, instilling hope means just providing one more therapy [2], instead of initiating the difficult conversations. Maintaining hope, as we have seen, is a constant concern of health professionals [10]. However, in order to combine the need for effective communication with the duty of honesty in the provision of information, it is necessary to gauge the content of the hope intended to be maintained, so that there can be talk of a reasoned hope.

74

5  Difficult Conversations

References 1. Temel JS, Greer JA, Admane S, Gallagher ER, Jackson VA, Lynch TJ et  al. Longitudinal Perceptions of Prognosis and Goals of Therapy in Patients With Metastatic Non–Small-Cell Lung Cancer: Results of a Randomized Study of Early Palliative Care. Journal of Clinical Oncology. 2011;29:2319–2326. 2. Gordon EJ, Daugherty CK. ‘Hitting You Over the Head’: Oncologists’ Disclosure of Prognosis to Advanced Cancer Patients. Bioethics. 2003;17:142–168. 3. Wise PH.  Cancer drugs, survival, and ethics. BMJ. 2016;355:1–4. https://doi.org/10.1136/ bmj.i5792 4. Ayanian JZ et al. Understanding cancer treatment and outcomes: the Cancer Care Outcomes Research and Surveillance Consortium. J Clin Oncol 2004;22(15):2992–6. 5. Weeks JC, Catalano PJ, Cronin A, et  al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012;367:1616–1625. https://doi.org/10.1056/ NEJMoa1204410 6. Araújo CP, Garcia ACM, Murad Júnior M.  The expectations of metastatic cancer patients regarding palliative chemotherapy: A Brazilian–German qualitative study. Palliative & Supportive Care. 2023:1–7. https://doi.org/10.1017/S1478951522001766 7. The Economist. A better way to care for the dying. 2017. https://www.economist.com/ international/2017/04/29/a-­better-­way-­to-­care-­for-­the-­dying. Accessed 30 May 2018. 8. Barclay S, Maher J.  Having the difficult conversations about the end of life. BMJ. 2010; 341:c4862. https://doi.org/10.1136/bmj.c4862 9. Nuland SB. How We Die: Reflections of Life’s Final Chapter. New York: Vintage; 1994. p. 221. 10. Gawande A. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books – Henry Holt Company, LLC; 2014. 11. Buiting HM, Rurup ML, Wijsbek H, van Zuylen L, den Hartogh G.  Understanding provision of chemotherapy to patients with end stage cancer: qualitative interview study. BMJ. 2011;342:d1933. https://doi.org/10.1136/bmj.d1933. 12. Wanzer SH, Federman DD, Adelstein SJ, et al. The physician’s responsibility toward hopelessly ill patients. A second look. N Engl J Med. 1989;(13):844–849. https://doi.org/10.1056/ NEJM198903303201306. 13. Callahan D.  The Troubled Dream of Life: in Search of a Peaceful Death. Washington: Georgetown University Press; 2000. p. 37. 14. Marsh H. Do No Harm: Stories of Life, Death, and Brain Surgery. New York: Thomas Dunne Books; 2014. p. 123–124. 15. Mukherjee S.  The Emperor of all Maladies: A Biography of Cancer. New  York: Simon & Schuster; 2011. p. 397. 16. Araújo CP.  Existe direito à esperança? Saúde no contexto do câncer e fim de vida. Rio de Janeiro: Lumen Juris; 2020. p. 220. 17. Braun LT, Grady KL, Kutner JS, et al. Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association. Circulation. 2016;134(11):e198-e225. https://doi.org/10.1161/CIR.0000000000000438 18. Kissane DW. et al (Eds.). Oxford Textbook Communication in Oncology and Palliative Care. 2. ed. Oxford: Oxford University Press; 2017. p. 79. 19. Carduff E, Kendall M, Murray SA.  Living and dying with metastatic bowel cancer: Serial in-depth interviews with patients. Eur J Cancer Care (Engl). 2018;27(1):e12653. https://doi. org/10.1111/ecc.12653 20. Wright AA, Zhang B, Keating NL, Weeks JC, Prigerson HG. Associations between palliative chemotherapy and adult cancer patients’ end of life care and place of death: prospective cohort study Associations between palliative chemotherapy and adult cancer patients’ end of life care and place of death: prospective cohort study. BMJ. 2014;348:g1219. https://doi.org/10.1136/ bmj.g1219

References

75

21. Wright AA, Zhang B, Ray A, et  al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665–1673. https://doi.org/10.1001/jama.300.14.1665. 22. Barak R, Yohay EZ, Waissengrin B, Wolf I. Chemotherapy at the end of life: Do we know when to stop? Journal of Clinical Oncology. 2021;39. https://doi.org/10.1200/JCO.2021.39.15_ suppl.e24005 23. Bernacki RE, Block SD; American College of Physicians High Value Care Task Force. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med. 2014;174:1994–2003. https://doi.org/10.1001/jamainternmed.2014.5271

Chapter 6

Palliative Care: Life with Dignity: Until Its End

In Antiquity, the dead were considered sacred beings, which was not the privilege of great men. The ancients had for the dead the veneration that man can have for the divinity and every dead person was seen as a god [1]. This posture has totally changed in Modernity. The sciences of man were very discreet about death, establishing a great silence around it, which intensified during the twentieth century. In possibly the most current and complete work on the subject, Philippe Ariès states that “during the latter half of the century, historians and experts in the new sciences of man have been accomplices of their own society: they have dodged, as much as the common man, a reflection on death” [2, p. 268]. Until the Renaissance, man still sought to participate in his own death, seen as part of his life and a unique moment in it, wherein his individuality received a definitive form [2, p. 218]. From the seventeenth century on, however, man ceased to be the sovereign of his death [2, p. 213], duped by the illusion of what technology can do and to what extent it can prevent the end [2, p. 220]. Society began to prolong the lives of its sick for as long as possible, albeit without helping them to die [2, pp. 271–272]. At the same time, the moral rule was enshrined that man must die in ignorance of the proximity of his death, it being the duty of the doctor and the family to conceal the seriousness of the sick person’s condition [2, p. 217]. This perception is well illustrated from the famous story of Ivan Ilitch, in the work of Tolstoy from 1866, which shows that instead of thinking of himself as a person, the sick person should be concerned with carefully observing his pain and the functions of his body, summarizing the interests of his “life” to the effects of his illness. In order to maintain the shared lie that his condition is not so critical and that his death is not imminent, the patient himself is forced to pretend [2, p. 260]. Whereas the event of death was once made public, there being a social space in which death was perceived and part of existence, in Modernity, it became something

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. P. d. Araújo, Palliative Treatment for Advanced Cancer Patients, https://doi.org/10.1007/978-3-031-30776-8_6

77

78

6  Palliative Care: Life with Dignity: Until Its End

contrary to life and unwanted, as it broke the daily familiarity [2, p. 66]. It finally became the greatest taboo of the Western world. But death is an inevitable and normal part of life and the community’s understanding and acceptance of it can profoundly alleviate the discomfort created by overconfidence in medical technology curing all illness [3]. This awareness prevents one from lacking confidence when choosing not to face or continue aggressive treatments that are not very effective and enables one to understand that this is not a personal failure.

6.1 Life with Dignity The idea that doctors are obliged to prolong biological life as long as possible and at any cost is recent and unprecedented in the history of medicine, which, until recently, has always been guided by the idea that one should treat when possible and always care for [4]. Nowadays, however, it is common for the physician, positioned in a culture of treatment, to forget that, beyond the disease and the “patient,” there is a person, a human being in an extremely fragile situation. There is a view that the patient is “considered more as a therapeutic opportunity or clinical challenge and less as a person possessing rights” [4]. When talking about patients with advanced stage cancer, one is not necessarily talking about people who are in their last days. Many will live weeks and months. A significant part will live more than a year. And no matter the quantity, “the end of life is still life” [5]. Hence, the possible impropriety of working with the often-used expression “death with dignity,” which makes room for specific discussions such as euthanasia and assisted suicide. Even if consecrated, the expression “death with dignity” can divert attention from the most important aspect of this discussion, which is exactly the end of life to live. In this sense, the idea of life with dignity – until death – seems to present a better context for the palliative care issue than the expression “dignified death,” even more so because “palliative care is about life, not death” [6]. If we can agree that treating sick people as people first and patients after is a priority and that respect for the human being as a rational being requires respect for his/her capacity to make an informed rational decision [7], palliative care, especially when provided early in the course of a disease, has a very important role to play. Human dignity, especially in the final stage of life, can be represented exactly by life with quality until the so-called good death, regardless of the extent. Moreover, one of the important corollaries of dignity is precisely autonomy, giving the individual the right to access the information needed for decision-making, which depends on good communication, one of the most central aspects in palliative care.

6.1  Life with Dignity

79

Furthermore, with the proper control of symptoms, not just physical ones, it is possible to preserve, to the greatest degree possible, functional capacity and, consequently, autonomy. It is important to say that the role of autonomy in palliative care has been explicitly recognized, among other international bodies, by the World Health Organization, the European Palliative Care Association, and the English National Health Service (NHS) [8].

6.1.1 Immediate Dignity The use of aggressive treatments to combat diseases does not work on the idea of immediate dignity, but on the assumption that there will be a positive consequence at a later time or in the long term. The underestimation of the incidence of pain gains prominence when the therapeutic aims become obstinate, and even while aware of the side effects of the intended treatments, pain cannot be accepted as the main surmountable reality. The approach of palliative or supportive care, on the contrary, is concerned with the relief of suffering and limiting pain in the most immediate way possible. Hart states that the overwhelming majority of people want to live, even at the cost of terrible suffering [9]. For Fuller in making this statement, Hart seems to be positing survival no longer as a necessary condition for the achievement of other ends but as something that fills the core and central element of all human struggle [10]. For Fuller [10], however, As Thomas Aquinas remarked long ago, if the highest aim of a captain were to preserve his ship, he would keep it in port forever. As for the proposition that the overwhelming majority of men wish to survive even at the cost of hideous misery, this seems to me of doubtful truth.

Pereira states that there is a consensus that mere survival, regardless of the conditions and quality of life, is not a goal in itself [11]. Regardless of the concept of health adopted, its fulfillment cannot be achieved when suffering from pain, especially treatable pain, in all of its expressions. Cancer patients frequently experience severe and chronic pain. Nevertheless, Brazilian Professor Cibele Pimenta explains that it is not difficult to control this pain, which in 70–90% of cases could be adequately managed by using simple methods. The unsatisfactory relief occurs by underestimating the incidence of pain, inaccurate evaluation of pain status, insufficient knowledge about methods and appropriate analgesics, underestimating affective aspects, especially depressive conditions, as well as mistaken beliefs about the control of oncologic pain, such as psychic dependence through the use of opiates [12].

80

6  Palliative Care: Life with Dignity: Until Its End

6.2 Palliative Care Although considered a human right for some time, the Inter-American Convention on Protecting the Human Rights of Older Persons [13], approved by the Organization of American States (OAS) in 2015, was the first Human Rights Treaty to recognize the right to palliative care [14]. The World Health Organization defines palliative care as a basic human right to the approach that improves the quality of life of people who face life-threatening illness, as well as their families, through the prevention and relief of suffering by means of early identification, correct evaluation and treatment of pain, and other physical, psychosocial, and spiritual issues [15], by multidisciplinary teams. The principles of palliative care programs, established by the World Health Organization in 1990, are: to affirm life and consider death a normal process; not to hasten or postpone death; to provide relief from pain and other symptoms that cause suffering; to integrate psychological, social, and spiritual aspects into patient care; to provide a support system to help the patient live as actively as possible until death; and to support the family in coping with the patient’s illness and in their own grieving process [16]. Taboada [17] lists five relevant ethical principles in palliative care: truthfulness, therapeutic proportionality, double effect on pain management and suppression of consciousness, prevention, and non-abandonment. The principle of truthfulness requires that the truth be communicated to the patient, so that he or she can actively participate in the decision-making process (autonomy). The author highlights, however, that there are situations in which the principle of non-maleficence may recommend postponing communication of information to the patient. The principle of therapeutic proportionality involves the verification of elements such as the usefulness of the medical measure involved, the alternatives for action, weighing up risks and benefits, the prognosis with or without the implementation of the intended measure, and its physical, psychological, moral, and economic costs. Taboada R. emphasizes that “judgment on the proportionality of a given medical intervention should be made with reference to the overall benefit of the therapy and not only in relation to the possible physiological effects it is capable of inducing” [17]. The third principle is concerned with the adoption of measures to control certain symptoms that may have unwanted effects, such as the use of opioids. The conditions for the use of measures characterized by this double effect are: that the action is good in itself or, at least, indifferent; that the predictable harmful effect is only tolerated and not desired; that the beneficial effect to the patient is not caused immediately and necessarily by the harmful one; and that the good sought is proportional to the eventual damage produced. The principle of prevention refers to the implementation of necessary measures to prevent the complications already expected by the evolution of a certain disease.

6.2  Palliative Care

81

Finally, the principle of non-abandonment concerns the obligation not to abandon the patient who rejects therapies that the doctor considers appropriate, as well as not to abandon patients in a terminal stage. Pessini reminds us that care must always take priority over cure, since “our victories over illness and death are always temporary, but our needs for support and care before them are always permanent” [18]. In cases of patients with no prospect of cure, this reality is even more latent, since the needs for more support and care will not only be permanent, but steadily increasing. Murray et al. believe that “by considering each dimension of need, palliative care may promote kinder and more realistic medicine, preventing unnecessary treatment” [6]. Thus, an open conversation with patients and family members that clarifies the likely course of the disease and future needs may allow a focus on early care, quality of life, and symptom relief [6]. The fundamental importance of palliative care, on the one hand, and its frequent untimeliness, on the other, reinforce the importance of delimiting health in the face of unfounded hope. Palliative care represents the consecration of the right to health.

6.2.1 Palliative Care as a Consecration of the Right to Health – and Hope In order to start a process in which the comfort of a patient matters more than how many days he or she has to live, it is necessary to be aware of the bad prognosis and to recognize that interrupting the search for actions to cure him/her or promote long survival is an acceptable measure. This is not to say that where there are palliative treatments, there cannot be management of palliative care. On the contrary, studies demonstrate the importance and benefits of the early integration of palliative care. However, many patients undergoing palliative treatment, notably chemotherapy, do not receive such early palliative care precisely because the patient is still being “actively” treated [19]. When doctors do not realize how close the patient’s life is to the end, not only can they miss the chance to dedicate themselves to the improvement of his/her remaining life, but, as the communication of the prognosis affects the patient’s conceptions of the future, it can contribute to counterproductive decisions. Patients in the final stage of the disease who have unduly optimistic perspectives often request futile and aggressive measures [20]. Since early palliative care is still not a reality in most scenarios, doctors frequently wait too long to refer people for palliative care, persisting in pointless treatment aimed at curing or prolonging life when these patients could still really benefit from palliative care measures.

82

6  Palliative Care: Life with Dignity: Until Its End

Palliative care should be offered as early as possible in the course of any life-­ threatening chronic disease, from the moment there is a diagnosis. This approach embraces “the process through which patients and providers share information with each other and work together to make decisions about care and treatment options from medically reasonable options that are aligned with the patient’s values, goals, and preferences” [21]. According to Saunders and Baines [22], it is noticeable that when palliative care is provided in a skillful and effective way, doctors find it less difficult to discontinue active therapy. In these cases, appropriate care takes the place of every technically possible and available treatment. Murray et  al. [6] cite studies that show that specialized care integrated with oncology, compared to standard care, increased quality of life and, for some people, longevity. It was stated that [6] Further recent trials and a systematic review report that early systematic provision of palliative care by many clinicians, not just by palliative care specialists, can improve quality of life of people with cancer and other advanced life limiting conditions. It can also help avoid burdensome interventions of low benefit. Studies of older people in Australia and people with chronic disease in Canada showed significant reductions in hospital admissions. Patients have been shown to have palliative care needs from diagnosis. Although trials do not explain which aspects of palliative care are the most important, helping people to make choices aligned with their priorities seems to be the key.

In addition, there are studies that demonstrate that the early start of palliative care management significantly improves the patient’s understanding of their prognosis over time, which impacts decisions, including treatment, at the end of life. Thus, patients in early palliative care who had an accurate knowledge of their prognosis were less likely to receive chemotherapy at the end of the disease’s course [23]. The integration of palliative care right after the diagnosis allows us to better understand the specific needs of patients, including the moment when they are ready to discuss the prognosis in more depth. Indeed, some patients may be ready to discuss it at their initial consultations, whereas others may need more time for it. In this way, in addition to the supportive care focused on the physical, psychological, spiritual, and cultural aspects of the disease, early palliative care enables patients to make more truly informed decisions by educating them about the disease, the prognosis and the benefits, and harm of medical treatment [23]. Thus, palliative care is much closer to the idea of the right to health, according to WHO guidelines and international regulatory acts, as well as most principles underlying local health regulations, generally based on Evidence Based Medicine, than the unbridled insistence on aggressive treatments. In many cases, these treatments not only do not reproduce the right to health, with only marginal benefits if any, but when they provide some gain in overall survival terms, they prevent its full enjoyment due to the low quality of life provided. According to Opinion No. 63 of the French National Advisory Committee on Ethics in Health and Life Sciences

6.2  Palliative Care

83

The undeniable advances in medicine and technique and the fantasies about immortality often lead to “expropriating the sick person, in the final phase of life, of death itself” and not allowing  – where still possible  – some control over living the last moments of his/her life [24].

Among other benefits, awareness of the severity of an illness arising from early palliative care may prevent one from feeling meek when choosing not to face or continue aggressive treatments that are not effective or don’t meet expectations. This helps the patient to understand that this is not his or her personal failure. Indeed, the idea that “whatever can be done to struggle against death ought to be done” has been especially binding on the patient him/herself, who feels obliged to suffer all kinds of medical torture to demonstrate a kind of moral obligation demanded by the doctors themselves, family, and society [25]. Based on the socialization of the idea that mortality is natural and that finitude is an aspect that equals all human beings, the patient can abdicate this supposed moral obligation to stay alive at any cost. If this is to be done by seeking love and support from others [26], the philosophy of palliative care is not only the true source of health but also the best way to cultivate hope. Indeed, early access to palliative care signifies not only the best way toward consecrating health but also true hope, since it helps to overcome despair and live the best life possible, with the maximum autonomous possible use of the time left, be it weeks or years ahead.

6.2.2 Palliative Care Offer Around the World Relieving serious health-related suffering should be a priority for any healthcare system. However, it is estimated that only 14% of patients who need palliative care receive it. Considering that palliative care is a global ethical responsibility, the World Health Organization recommends that countries include palliative care as a key part of their health systems. In 2014, the World Health Assembly passed the resolution 67.19, titled “Strengthening of palliative care as a component of comprehensive care throughout the life course,” calling on all nations to strengthen palliative care and to ensure its availability. Assessment tools have been developed to measure progress and partnerships are in place to develop and implement technical guidance, strengthen capacity, and disseminate information [27]. Also in 2014, the World Health Organization and the World Palliative Care Alliance published the Global Atlas of Palliative Care at the End of Life [28], a source of essential information on the status of palliative care worldwide. In 2020, the second edition of the Global Atlas was launched as the Global Atlas of Palliative Care [29] and revealed improved estimation of needs and some progress since 2014.

84

6  Palliative Care: Life with Dignity: Until Its End

The document includes data on the provision of palliative care around the world, under the following grading: countries with no known hospice palliative care activity (Level 1), countries with capacity building activity (Level 2), countries with isolated provision of palliative care (Level 3a), countries with generalized provision of palliative care (Level 3b), countries with preliminary health system integration (Level 4a), and countries with advanced health system integration (Level 4b). Most countries have isolated palliative care provision (3a), especially in Africa and the Americas. The Ivory Coast, South Africa, Uganda, Zimbabwe, Argentina, Chile, Mexico, Uruguay, Austria, Czech Republic, Georgia, Hungary, Kazakhstan, Latvia, Russia, Slovakia, Switzerland, Ukraine, Thailand, China, and Singapore are examples of nations with palliative care at the preliminary stage of integration. European nations including Belgium, Denmark, France, Germany, Iceland, Ireland, Italy, Liechtenstein, Lithuania, Netherlands, Norway, Poland, Portugal, Romania, Spain, Sweden, and the United Kingdom are examples of countries with palliative care at an advanced stage of integration (4b), in addition to the United States, Canada, Costa Rica, Barbados, Malawi, Swaziland, Australia, Japan, New Zealand, and South Korea. Although responsible for the largest public universal health-care system in the world, Brazil was among those countries that provided isolated palliative care in 2014 [28]. In the second edition of the Atlas, it appears as a country with generalized palliative care provision, along with Zambia, Kenya, Zambia, Belize, Colombia, El Salvador, Panama, Jordan, Oman, Qatar, Saudi Arabia, Albania, Belarus, Bulgaria, Cyprus, Finland, Luxembourg, Macedonia, Malta, Serbia, and Slovenia.

6.3 What Is the Way Forward for a Culture of Care? The model of assistance that existing public health policies generally adopt is mainly focused on disease rather than on the person [30]. Indeed, the current system in general, in different countries, remunerates hospitals and doctors for intensive procedures and treatments for patients at the end of their lives and does not facilitate reimbursement for the time dedicated to conversations about their values and care objectives [31]. This scenario allows us to conclude that for the adequate provision of palliative care to be recognized as an end in itself and not as something “merely palliative” or less useful as the term may imply – hence the claim of the term “supportive care” in its place – it is necessary to mainly change the mentality of doctors. The previously mentioned Global Atlas of Palliative Care, published by the World Health Organization and the World Palliative Care Alliance, sums up palliative care as a highly effective approach to relieving the pain and suffering of people who are affected by life-limiting illness, which optimizes their quality of life from early in the course of their disease until the end of their lives.

6.3  What Is the Way Forward for a Culture of Care?

85

Considering that millions of people worldwide still cannot access the palliative care that they need, the document presents steps to ensure this access, with specific recommendations. The first edition includes, among others, developing a comprehensive budget to increase access to palliative care services for all who need them, integrating them into health and community systems; ensuring that palliative care is integrated into specific and appropriate national policies; adopting measures to overcome barriers to access essential drugs, especially oral opioid analgesics, for people with terminal illnesses; monitoring progress in the development of palliative care at the national level; integrating education on palliative care into the compulsory curriculum; among others [28]. Recognizing that most health professionals have little or no knowledge of the practices and principles of palliative care, it is recommended that all medical schools include basic training in the subject and that continuing professional education includes the study of palliative care for trained health professionals [28]. The second edition of the Atlas organized topics in a more comprehensive way and is presented as follows [29]: Important recommendations for national governments to ensure access to palliative care for all those that need it are: 1. Financing: The financing of palliative care should be integrated into national health system budgets at all levels of care. As countries progress with their Universal Health Coverage reforms, it is vital that an essential package of palliative care is included. Mechanisms should be put in place to allow financial information on budgeting and expenditure on palliative care within health systems to be made available for scrutiny. Evidence to date suggests that palliative care is a cost-effective intervention when compared with standard care for individuals at the end of life. 2. Essential medicines: Palliative care medications as outlined in the WHO essential palliative care medications list should be available to all those who need them. This is particularly important for opioids which are crucial for pain treatment and managing severe respiratory distress. Access to inexpensive immediate and sustained release morphine is necessary for palliative care patients. To achieve this, countries can work with the International Narcotics Control Board (INCB), United Nations Office on Drugs and Crime (UNODC), WHO and civil society partners to address regulatory barriers and improve medication supply and management systems. 3. Health systems Governance: Palliative care should be included in the policies and structures of national health systems at all levels with accompanying accountability mechanisms. This is essential to ensure appropriate quality of care and that the most vulnerable and marginalized in societies are reached. 4. Health and social careworkforce: Palliative care should be integrated in the curricula of all new healthcare professionals and community healthcare workers training. In addition, all existing health care professionals and workers should be trained in essential palliative care as a matter of urgency. Addressing the training gap in those delivering social care to individuals having palliative care is also a matter of high importance. 5. Statistics and information systems: The monitoring of access to palliative care should be undertaken at all levels of care to ensure that all those who need it receive it. This means ensuring appropriate universally agreed indicators and data collection mechanisms as well as accessible reporting at the local, national and global level. Regular scrutiny and publication of the data output is essential.

86

6  Palliative Care: Life with Dignity: Until Its End 6. Service delivery and safety: Essential palliative care should be available where the person is, whether that is in the home, hospitals, or community settings such as care homes and hospices. Ensuring that people with palliative care needs are safe and cared for with dignity and respect is a crucial responsibility of national health systems. This must include those who are systematically left behind including children, older people, prisoners, sex workers, drugusers, refugees, people experiencing homelessness, and LGBT+ communities. 7. Community action: Communities play an important role in access to palliative care globally. This is done through providing care, e.g. volunteer community caregivers and family members, through to community members who engage and support others to understand the importance of palliative care and what it does. The crucial role of compassionate communities, including people living with palliative care needs, should be recognized and supported. It is especially important to understand and address the particular gendered nature of caregiving which falls on women and girls in communities and families without recompense, support and equipment, contributing to continued gender inequalities 8. Lived experience It is also crucial that there is an explicit commitment to the inclusion of the voice of those with lived experience in developing, delivering and monitoring palliative care at all levels. This includes development of training and teaching materials as well as, for example, indicators of care quality and understanding of barriers to the delivery of adequate palliative care. 9. Research continuing to establish a robust evidence base is a crucial component to building commitment to greater access to palliative care for those who need it. The research agenda should be funded to continue to examine the access, outcomes and cost effectiveness of palliative care and its impact on people’s lives and health systems.

Further recommendations for technical agencies, bilateral donors, funders and foundations, and civil society and communities are also given. Worthy of note is the exhortation to ensure that the voices of the most marginalized and vulnerable are heard and not left behind, signaling the importance of seeking equity in the provision of palliative care. One of the essential points in the provision of palliative care concerns the supply of essential medicines, especially opioids, about which there is still great misinformation: Essential palliative care medications, especially opioids, are required for the delivery of quality palliative care. Access to opioid medication for pain control is an enormous problem worldwide. Eighty per cent of the world’s population lacks adequate access to opioid medications for pain control. Australia, Canada, New Zealand, the United States, and several European countries account for more than 90% of the global consumption of opioid analgesics [28].

According to Cherny et al., for cancer patients, especially advanced and incurable cancers, adequate pain relief is a central objective, considered a human right by many health professional organizations, although not part of human rights conventions. This right implies the duty of doctors to treat pain in accordance with contemporary best practices that available resources permit and the duty of governments and health regulatory authorities to ensure that patients have access to the medicines necessary for pain relief [32]. For this to be effective, it is necessary to ensure that opioid analgesics are available, as they are critical for the effective relief of cancer patients’ pain. Both the

6.3  What Is the Way Forward for a Culture of Care?

87

World Health Organization and the International Narcotics Control Board recommend that opioids should be available to patients with moderate to severe pain, although at the same time there is a need to prevent abuse in their usage [32]. Laws that acknowledge palliative care as an essential part of the healthcare system are seen as a fundamental component for the changes necessary toward an effective implementation of a palliative care network. In this sense, the provision regarding financing deserves to be highlighted since one of the major problems regarding the structuring of palliative care refers to the lack of adequate financing. This is because proper communication is one of the most relevant aspects of effectively providing this health service. According to Gawande [33], Given how prolonged some of these conversations have to be, many people argue that the key problem has been the financial incentives: we pay doctors to give chemotherapy and to do surgery but not to take the time required to sort out when to do so is unwise. This certainly is a factor. But the issue isn’t merely a matter of financing. It arises from a still unresolved argument about what the function of medicine really is – what, in other words, we should and should not be paying for doctors to do. The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins.

In Brazil, for instance, remunerated procedures demonstrate that the system facilitates certain measures necessary for the adequate provision of palliative care. However, the time of the physician and multidisciplinary team necessary to the provision of a comprehensive and quality service are not properly considered. Allied to a culture that does not understand the importance and necessity of these measures, the system feeds back into treatment. On November 23, 2018, the Resolution of the Tripartite Interagency Commission No. 41 was published in the Official Federal Gazette, which provides guidelines for the organization of palliative care in SUS, at any level of the Health Care Network (Article 5). The objectives of the organization of palliative care were listed in article 3 of the Resolution, of which it is worth emphasizing sub-items IV, “to promote the institution of palliative care subjects and programmatic content in the teaching of graduation and specialization courses for health professionals”; V, “to provide permanent education in palliative care for health workers in SUS”; and VII, “to supply medicines that promote the control of symptoms in palliative care patients.” The initiative toward regulation of the matter in the infralegal sense is welcome, as it solves the problem of debating the appropriateness of the issue in the strict legal context, which, moreover, depends on a more complex and time-consuming legislative process. However, essential aspects for effectively implementing a real palliative care policy that attends the whole population have been relegated to the uncertainty of later regulation. As such, article 7 of the Resolution states that “access to medicines for treatment of symptoms related to palliative care, notably opioids, should follow current sanitary norms and observe agreements between SUS management structures.”

88

6  Palliative Care: Life with Dignity: Until Its End

Funding for the organization of palliative care should also be covered by further regulation, which places in doubt the effectiveness of the norm itself. The Law of Palliative Care Bases from Portugal, one of the countries with palliative care at advanced stage of integration, for example, states that “the financing of palliative care provision, in the scope of the RCNP, is the responsibility of the Ministry of Health and is governed by constitutional principles, the Basic Law on Health and other applicable legislation”. This Portuguese Law, n. 52/2012, is a good reference for regulation on the matter and some of its definitions deserve special mention: BASE II Concepts For the purposes of this law: a) «Palliative care» means active, coordinated and global care, provided by specific units and teams, in hospital or at home, to patients suffering from incurable or serious disease in advanced and progressive stages, as well as to their families, with the main objective of promoting their well-being and quality of life, through the prevention and relief of physical, psychological, social and spiritual suffering, based on early identification and rigorous treatment of pain and other physical problems, in addition to psychosocial and spiritual ones; b) «Palliative actions» are the isolated therapeutic measures without curative intent, practiced by professionals without specific preparation, aimed at mitigating, in hospital or at home, the negative repercussions of the disease on the patient’s overall well-being, particularly in a situation of incurable or serious disease, in advanced and progressive stages; c) «Continuity of care» means the sequentiality, in time and in the services of the RNCP, and outside of it, of the integrated healthcare interventions and psychosocial and spiritual support; d) «Diagnostic and therapeutic obstinacy» means diagnostic and therapeutic procedures that are disproportionate and futile in the overall context of each patient, without any benefit to the patient, and which may themselves cause increased suffering; e) «Family» means the person or persons designated by the patient or, in the case of minors or persons lacking decision-making capacity, their legal representative, with whom the patient has a close relationship, whether or not they are related to the patient; (…)

The principles that should guide the provision of palliative care according to the law are also noteworthy. Among others, death should be considered a natural process not to be prolonged through therapeutic obstinacy; palliative care is ruled by the idea of increasing the quality of life of people living with a serious illness and their families, through individualized, humanized, and technically rigorous services, provided in interdisciplinary and multidisciplinary ways; aspects such as differentiated knowledge of pain and other symptoms, consideration for the individual needs of patients and respect for personal, cultural and religious values, beliefs and practices are especially relevant. Regulation that affirms the value and necessity of palliative care, especially when it naturalizes the idea of early palliative care, is an important step forward, even when not stipulating the means of effective execution and control, and should therefore be encouraged.

References

89

Besides the deficit in professional training in palliative care, the dissemination of this form of care is impaired by the vision of death as a failure, with investments in healing or maintenance of life at any cost, which makes the recognition of the “palliative care patient one of the great difficulties of medical professionals” [34]. In this sense, public policies that affirm palliative care as a necessary way to improve life are significantly meaningful. There are several ways of thinking about the organization of a palliative care network, such as integrated multidisciplinary teams, palliative care stations in hospitals or autonomous units, home care, and hospices. The choice and actual implementation of any one of them can be challenging. Nevertheless, structural difficulties are not the biggest problem to be faced. The most important factor in this necessary cultural change worldwide is the understanding that death is not an avoidable biological accident or a medical failure and, sooner or later, cannot be prevented. The best possible life to be lived until then – and the best care available in the very final moments – should take priority in discussions on health systems. For Peter Wise, unnecessary and unjustified momentum are created to start chemotherapy, and until better drugs become available, more patients with poorly responsive cancer should receive palliative care alone [35]. Indeed, palliative care in the face of life-threatening diseases must be seen as a necessity; active treatments such as chemotherapy are the ones that should be seen as possible alternatives, depending on the values, choices, and possibilities of each patient. Starting a treatment for a disease must be a choice, not a moral imposition, and it is time to honestly recognize that, many times, it is not even legally or ethically the best way to achieve someone’s right to health and indeed often represents precisely the opposite.

References 1. Coulanges F de. A Cidade Antiga. São Paulo: Martin Claret; 2009. p. 30. 2. Ariès P.  História da morte no Ocidente: da idade média aos nossos dias. Tradução Priscila Viana de Siqueira. Rio de Janeiro: Nova Fronteira; 2017. 3. MCcoughlan M. A Necessidade de Cuidados Paliativos. In: Pessini L, Bertachini L (Org.). Humanização e Cuidados Paliativos. São Paulo: EDUNISC-Edições Loyola; 2004. p. 177. 4. Mota JCA. Quando um Tratamento Torna-se Fútil. Revista Bioética. 1999;7. 5. Corns J. Collaboration on Suffering and Autonomy at the End of Life. University of Glasgow. 2018. http://endoflifestudies.academicblogs.co.uk/collaboration-­on-­suffering-­and-­autonomy-­ at-­the-­end-­of-­life/. Accessed 24 May 2018. 6. Murray S. Palliative care from diagnosis to death. BMJ 2017;356:j878. https://doi.org/10.1136/ bmj.j878 7. Benjamin M, Curtis J. Ethics in Nursing: cases, principles, and reasoning. 4. ed. New York: Oxford University Press; 2010. p. 36. 8. Emmerich N, Mallia P, Gordijn B, Pistoia F.  Contemporary European Perspectives on the Ethics of End of Life Care: An Introduction. In: Emmerich N, Mallia P, Gordijn B, Pistoia

90

6  Palliative Care: Life with Dignity: Until Its End

F. (eds) Contemporary European Perspectives on the Ethics of End of Life Care. Philosophy and Medicine, vol 136. Springer, Cham. 2020. https://doi.org/10.1007/978-­3-­030-­40033-­0_1 9. Hart HL. A. The Concept of Law. 2. ed. New York: Oxford University Press; 1994. p. 192. 10. Fuller LL. The morality of law. New Haven: Yale University Press; 1969. p. 185. 11. Pereira AGD.  Valor do Consentimento num Estado Terminal. In: Ascensão JO. (Coord.). Estudos de Direito da Bioética. vol 4. Coimbra: Almedina; 2012. p. 39–40. 12. Pimenta CAM. Dor oncológica: bases para avaliação e tratamento. In: Pessini L, Bertachini L (Org.). Humanização e Cuidados Paliativos. São Paulo: EDUNISC-Edições Loyola; 2004. p. 247. 13. Brennan F.  Palliative care as an international human right. J Pain Symptom Manage. 2007;33:494–499. https://doi.org/10.1016/j.jpainsymman.2007.02.022 14. Luca GB.  A Human Rights Treaty Finally Recognizes the Right to Palliative Care. Ope Society Fundations. 2015. https://www.opensocietyfoundations.org/voices/human-­rights-­ treaty-­finally-­recognizes-­right-­palliative-­care. Accessed 16 Dec 2022. 15. World Health Organization. Palliative Care  – Key facts. 2020. https://www.who.int/news-­ room/fact-­sheets/detail/palliative-­care. Accessed 16 Dec 2022. 16. Kovács MJ.  Comunicação nos Programas de Cuidados Paliativos: Uma Abordagem Multidisciplinar. In: Pessini L, Bertachini L (Org.). Humanização e Cuidados Paliativos. São Paulo: EDUNISC-Edições Loyola; 2004. p. 286. 17. Taboada RP. El Derecho A Morir Con Dignidad. Acta bioeth. 2000;6. 18. Pessini L.  A Filosofia dos Cuidados Paliativos: Uma Resposta Diante da Obstinação Terapêutica. In: Pessini L, Bertachini L (Org.). Humanização e Cuidados Paliativos. São Paulo: EDUNISC-Edições Loyola, 2004. p. 196. 19. Wise PH.  Cancer drugs, survival, and ethics. BMJ. 2016;355:1–4. https://doi.org/10.1136/ bmj.i5792 20. Christakis NA, Lamont EB.  Extent and determinants of error in doctors’ prognoses in terminally ill patients: prospective cohort study. BMJ. 2000;320(7233):469–472. https://doi. org/10.1136/bmj.320.7233.469 21. Braun LT, Grady KL, Kutner JS, et al. Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association. Circulation. 2016;134:e198–e225. https://doi.org/10.1161/CIR.0000000000000438 22. Saunders C, Baines M.  Living With Dying: The Management of Terminal Disease. 2. ed. New York: Oxford University Press; 1989. p. 3. 23. Temel JS, Greer JA, Admane S, Gallagher ER, Jackson VA, Lynch TJ et  al. Longitudinal Perceptions of Prognosis and Goals of Therapy in Patients With Metastatic Non–Small-Cell Lung Cancer: Results of a Randomized Study of Early Palliative Care. Journal of Clinical Oncology. 2011;29:2319–2326. 24. Pessini L. Distanásia: Até Quanto Prolongar a Vida? São Paulo: Loyola; 2001. p. 45. 25. Callahan D.  The Troubled Dream of Life: In Search of a Peaceful Death. Washington: Georgetown University Press, 2000. p. 60. 26. Hernandez JG. Gabriel Marcel’s Ethics of Hope: Evil, God and Virtue. London: Bloomsbury Academic; 2011. p. 72. 27. World Health Organization. Palliative Care. https://www.who.int/health-­topics/palliative-­care. Accessed 16 Dec 2022. 28. Worldwide Palliative Care Alliance, World Health Organization. Global Atlas of Palliative Care at the End of Life. 2014. 29. Worldwide Palliative Care Alliance, World Health Organization. Global Atlas of Palliative Care at the End of Life. 2021. https://www.thewhpca.org/resources/global-­atlas-­on-­end-­of-­ life-­care. Accessed 16 Dec 2022. 30. Hunt P, Backman G. Health systems and the right to the highest attainable standard of health. Health Hum Rights. 2008;10:81–92.

References

91

31. Periyakoil VS, Neri E, Fong A, Kraemer H. Do unto others: doctors’ personal end-of-life resuscitation preferences and their attitudes toward advance directives. PLoS One. 2014;9:e98246. https://doi.org/10.1371/journal.pone.0098246 32. Cherny NI, Cleary J, Scholten W, Radbruch L, Torode J. The Global Opioid Policy Initiative (GOPI) project to evaluate the availability and accessibility of opioids for the management of cancer pain in Africa, Asia, Latin America and the Caribbean, and the Middle East: introduction and methodology. Ann Oncol. 2013;24 Suppl 11:xi7–xi13. https://doi.org/10.1093/ annonc/mdt498 33. Gawande A. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books – Henry Holt Company, 2014. p. 187. 34. Silva MM, Büscher A, Moreira MC, Duarte SCM. Visitando hospices na Alemanha e no Reino Unido na perspectiva dos cuidados paliativos. Escola Anna Nery Revista de Enfermagem. 2015;19. https://doi.org/10.5935/1414-­8145.20150051 35. Wise PH.  Palliative care doctors should be included in treatment discussions. BMJ; 2017;356:j1551. https://doi.org/10.1136/bmj.j1551

Chapter 7

It’s Time to Talk About Dying

7.1 The Limits of Medicine Patients who know they are more or less close to the end of their lives deserve the best life they can have. A good end to life should be viewed as a medical success story [1], not failure. Death is not a medical failure [2]. Regardless of one’s subjective, spiritual, and religious issues, human life is composed from the perspective of death. It is a fundamental element of existence and shapes the way projects, affective relationships, fears, and illnesses are faced. By promoting the withdrawal of death from its natural relation to human beings, society has transformed many of its institutions, especially medicine. Callahan says that the advances in modern medicine added a moral dimension to the way we see death. Believing that death can be, if not totally suppressed, at least indefinitely postponed made it appear as something evil. And if death is an evil, we have a moral obligation to combat it. How do we do so? With medicine. In May 2018, the English charity for cancer patients Macmillan Cancer Support released a publication called “Missed Opportunities” in which it demonstrated that the assumption that cancer patients are fighters in a battle against the disease has a negative impact on them [3]. Research requested by the institution showed that almost two thirds of patients do not talk about their fear of dying, because they feel pressured to adopt a positive posture and “fight”. In addition, many patients feel guilty about a perceived lack of optimism. Dying from most metastatic cancers is not a defeat or giving up, however. And even worse than considering death as a medical or technological failure is considering it a failure on the part of the patient, as if he/she could have chosen to fight more. But even among people who have already surpassed the general rates of life expectancy, there is hardly any natural acceptance of living only that far.

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. P. d. Araújo, Palliative Treatment for Advanced Cancer Patients, https://doi.org/10.1007/978-3-031-30776-8_7

93

94

7  It’s Time to Talk About Dying

The disease carries with it the idea that there is always something more to do – another doctor, another treatment, another hospital, another country. “Medicine has to have a solution,” which has not yet been made available to the patient through someone else’s omission – the doctor, the hospital, the State, the health plan. “What can be done to struggle against death ought to be done” became the moral premise of modern medicine, with the creation of the idea that what can be medically done ought to be medically done [4, p. 60]. In seeing death as an enemy to conquer, we no longer locate human mortality as part of the natural cycle of life. This deliberate blindness, which results in a tireless scientific fight against death, makes us believe that it is a correctable biological deficiency [4, p. 58], instead of developing a medicine that knows how to coexist with it [4, p. 179]. However, medicine has an inexorable limit: there will never be a point where it will be possible to treat or eliminate all diseases. Indeed, historically, the disappearance of diseases that could be treated has always been accompanied by the appearance of new ones.

7.2 Seeing the People Behind the Patients In the Introduction to the book “Being Mortal,” Atul Gawande recalls the end of one of his patient’s lives and resents the observation that doctors have much more difficulty in practicing honesty with patients and with themselves, than in facing complex medical procedures. He tells the story of a man in his 60 s who had a highly metastatic prostate cancer. A very risky surgery was proposed, the benefit of which, if any, would be very doubtful. In any case, the patient would only have a few months to live. Still, the man wanted to continue. Gawande says that, more than the bad decision made by the patient, what impressed him was that his doctors had “no difficulty explaining the specific dangers of various treatment options,” but they never talked about the reality of his illness, the impossibility of a cure, and what could matter more to him in the face of the fact that his life was coming to an end [5, p. 75]. The last moments of cancer patients – be they days, weeks or months – often signify submission to treatments about which the patient has not been properly informed, which quite possibly the family or the physician have chosen and, if they do not shorten biological life itself, will reduce effective existence. Although there are several studies that demonstrate, on one hand, only marginal benefits of palliative (active) treatments for advanced cancer patients and, on the other hand, the absence of effective patient autonomy treatment choices, there is resistance to approaching the subject in the context of medical futility. Treatment, even when it makes no sense at all in terms of potential benefits and probable side effects, is seen as a necessity. We expect to treat and to be treated no matter what.

7.2  Seeing the People Behind the Patients

95

The reason why physicians continue to prescribe palliative chemotherapy as if it were a necessity – and not a possibility – may be found in the fact that decisions about treatments are influenced more by diagnosis than by prognosis [6], focusing more on the fact that there is a serious disease than on what can actually be done about it and on what can really be done, not for the patient as his or her underlying disease, but for someone who exists despite the disease and has concerns and values beyond his or her cancer. By choosing therapeutic options that focus only on the disease, the patient often does not receive adequate pain treatment and relief of suffering. The tiredness and drowsiness that prevent him/her from living half the time are often not recognized as a problem, as long as the treatment has elicited some “response”. This posture dehumanizes the patient, who sees his/her suffering relativized in favor of a supposed “greater good”. A legal configuration in these terms leads to the abandonment of the patient, encouraging a focus on the disease to the detriment of the individual and discouraging investment in measures that advocate health as well-being. In this obsession for treatments, without knowing their effective potential, the opportunity to face several issues is lost. Many patients have other concerns besides the evolution of the disease, such as not being able to work anymore, having side effects that prevent basic actions such as sewing, and how the disease will impact family life, especially in relationships with kids. Research indicates that among the main concerns of patients with serious illnesses are avoiding suffering, strengthening their relationships with family and friends, being mentally aware, not being a burden to others, and achieving a sense of fulfillment [5, p. 155]. Very often, health professionals and family members themselves seem to forget that beyond the disease and the “patient,” there is a person, a human being in a situation of absolute fragility. Regardless of what is expected from the future with an illness, the sick person goes through moments of great suffering until it comes to pass, or not. Although they cannot always promote healing, physicians must always alleviate patient suffering [7], and severely ill patients deserve the assurance that they will not suffer a social death even before the death of their bodies, abandoned by their doctors [8, p. 146]. But “patients who are well cared for so long as they are under active investigation and treatment are often neglected during the later stages of their illness, particularly if these are protracted” [9]. One of the most important rights of the patient, regardless of belief in the existence of curative or life prolonging treatments, is the right to expect reasonable continuity of care, especially in relation to the relief of symptoms and pain. It is the role of medicine to make life more tolerable. The true role of the physician needs to be reviewed in this new social conformation, increasingly optimistic about the possibilities of health technologies, especially drugs. The physician is not – or at least should not be – a mere technician of

96

7  It’s Time to Talk About Dying

diseases, and therefore the impossibility of overcoming them should not be seen as a failure. Naturally, physicians do not learn to be physicians only in college. Their training is continuous and largely determined by how patients and society react to their practice. In addition to being professionals, they are human beings submitted to the same shared anxieties. The role of medicine is established in a context that goes far beyond health courses, the settlement of public policies, and the specific limitations of each country. In caring for the other, we must establish the keystone of respect for human dignity, on which everything else must be built. It is through care that we are able to respect individuality and that we can show our solidarity with each other, not least because everything else will inevitably fail at some point in one’s life [8, p. 149].

7.3 No Other Way to Live Given the context presented here, the recognition of a right to hope in a general and abstract sense would only contribute to prematurely end discussions that should involve society as a whole, rethink medical training, enhance forms of communication, and restore the central place of care for the human being and not just the patient and his/her disease. The original true role of medicine is in relieving pain and bringing comfort to those who suffer. Beyond ensuring health and survival, medicine should seek well-­ being, which has more to do with “the reasons one wishes to be alive” [5, p. 259]. If hope cannot be considered a necessary element of health, insofar as it can promote situations contrary to health, its apprehension by the Law faces the contradiction of allowing something negative to the individual’s well-being to be viewed as positive to his/her dignity, to the point of being raised to the status of right. Crediting a miracle to measures with no scientific possibility of achieving the expected results cannot be confused with the consecration of health. And if the need for hope has played such a central role in the context of health, it seems necessary to admit that we need to (re)familiarize ourselves with the precariousness of human nature [10]. Moreover, such recognition of abstract protection of the right to hope would only reinforce the context of escape from mortality. Severe diseases bring to the fore the discussion about death, usually avoided by most people. We know we’re going to die, but we don’t talk about it. It is a certain fact, with an uncertain date, until one is affected by a disease with a poor prognosis. Still, there seems to be a supposed social consensus that to treat a patient with dignity is to prevent him/her from reflecting on the proximity of dying, subjecting him/her to treatments that, in theory, may postpone this process, even for a few days or weeks and at the cost of much sacrifice.

7.3  No Other Way to Live

97

The decision not to truly and honestly share the dimension, and finality of an illness with patients invariably takes away their autonomy regarding what to do with the remaining time. The underlying reason why we struggle to be honest with our seriously ill patients, elevating the idea that keeping their hope for long-term improvement is a kind of superior principle, relies on the reality that people are uncomfortable with mortality. In 2010, BMJ published an article entitled We’re all going to die. Deal with it, in which it was said that “we live in a culture in which people are uncomfortable with their own mortality” [11]. Uncomfortable with the one and only certainty that each of us have, the one that gives sense to our lives after all. In the Foreword to Paul Kalanithi’s book, “When Breath Becomes Air,” Abraham Verghese says that in the light of his colleague’s gloomy diagnosis, he became aware not only of his mortality, but also of his own [12]. The narrative illustrates well Pascal’s quote via Lopston [13]: Let us imagine a number of men in chains, and all condemned to death, where some are killed each day in the sight of the others, and those who remain see their own fate in that of their fellows, and wait their turn, looking at each other sorrowfully and without hope. It is an image of the condition of men.

For Loptson, the image represents our real situation, temporarily “telescoped,” because we use our imperfect powers of memory and our facility in distracting ourselves [13]. Finitude, which is inexorably shared by each one of us, means we also share the fears and afflictions that affect all those who become sick. Seeing the other fall ill and die reminds us of our own reality and the certain future of each one, albeit at an uncertain moment. Paul Kalanithi says that the close contact with his own mortality had changed everything and nothing at the same time, because before the diagnosis, he knew he would die one day, but not when. After the diagnosis, he went on not knowing when but became certain that the end was near. He recognized that the awareness of death is disturbing. But that there is no other way of living [12, p. 131–132].

7.3.1 Dying Is Part of Living In Philosophy, Tolstoy, Heidegger, Sartre, Camus, and Ernest Becker, among others, presented mortality as, possibly, our deepest and most worrying fear. For them, the constant threat of death is so intolerable that we inevitably tend to repress it. Thus, the complete acceptance of mortality itself would be, if possible, extremely difficult and rare. On the other hand, this acceptance is presented as a crucial condition of living in an authentic manner [14].

98

7  It’s Time to Talk About Dying

Although the twentieth century saw examples of the importance of discussing death [4, p. 34], and in recent years, there has been an evident movement to reaffirm the importance of talking about the subject,1 and a cultural change is necessary if we want, in the future, to face the subject with the naturalness that is inherent to it. In general, the scenario outlined by Ariès still in the 1970s remains, in which we do not allow the subject of death into social relations, because it provokes an emotional tension incompatible with the regularity of daily life [15]. To perceive the need to question this culture is to look on death not with indifference, but with the exaltation of life whatever its duration. It is to realign expectations and to understand the gap between avoidable and inevitable deaths. Siddhartha Mukherjee says that people complain that medicine gets us used to the idea of death, but that medicine’s complete failure is represented by getting us used to the idea of life. To the idea of surviving [16, p. 400]. The doctor’s resistance to taking away from the patient the hope of a cure or a long life after and with disease is one of the ways in which we manifest our entire society’s current refusal to admit the existence of death [17]. In doing so, we frequently abandon patients who could still have a good end of life. We give them more treatment, instead of care and health. Instead of a better life. This is certainly one of the main reasons why we have been communicating badly with our patients and depriving them of their autonomy. Depriving them, to a great extent, of the end of their lives. The lack of understanding effective possibilities prevents the patient from comprehending the proximity of death and from making truly informed decisions about treatments that may be useless in terms of his/her goals or reduce quality of life for the sake of an imagined future. The primacy of active treatment, in detriment to caring, creates a vicious circle between what physicians expect from society and what society expects from physicians. Health systems pay better for “active” interventions and physicians treat more; society receives more treatment and is given little incentive to value care. The patient is objectified as a sick person, suppressing the individual who exists in spite of the illness, with his or her independent afflictions and concerns. The opportunities for changing this scenario depend on society’s acceptance of death as part of life and a change in the training of physicians. Dying is part of living.

7.3.2 It’s Time to Talk About Cancer. It’s Time to Talk About Dying The large stigmatization of cancer means it is still seen as an external and distant enemy. We do not want to talk about it, nor even say the word out loud.  Death cafes – whose goal is “to increase awareness of death to help people make the most of their (finite) lives” (deathcafe.com) – are prominent, with initiatives in more than fifty countries. 1

7.3  No Other Way to Live

99

But cancer is not transient. It has come to stay and be part of us and the people close to us. It can no longer be that disease that someone has. It is our disease – latent and uncertain  – sometimes, it is simple and curable; often, it is overwhelming. When radiotherapy began to be used in cancer treatment, a Chicago doctor noted: “I believe this treatment is an absolute cure for all forms of cancer,” “I do not know what its limitations are” [16, p. 75]. A while later, not only was its limited effect on the treatment of metastatic tumors understood, but the treatment caused other cancers [16, p. 77]. Such a situation had already happened before and has happened other times since. From time to time, we share the same optimism, no matter how many times the diseases under the catchall of cancer have shown their strength and exhausted the so-called unlimited success. The promising innovation of the moment is called immunotherapy. Although it is already known that most patients will not benefit from it and that it is not yet certain who its eventual recipients are, the new treatment possibility reinforces vain hopes and increases the chances of undignified ends of life. Robert Wachter, director of the University of California’s Medical Department, says that millions of dollars are being invested to study immunotherapy – which has exacted a high price [18] – and that the sooner we can identify patients who will or will not benefit from the therapy, the better. But “‘prolonged misery’ has afflicted many who fall by the wayside while hoped-­ for miracles are pursued” [1, p. 17]. Wachter points out that, as we continue to chase progress in cancer, we should make sure that we don’t leave patients behind on the way, those who deserve a death with dignity – or, as I would say, a life with dignity, free from pain and discomfort, until death takes over. As such, we must concern ourselves with the best possible management of end of life and death, the final responsibility that the physician practices. Physicians must recognize the limitations inherent to the science and accept that their objects are mortal beings [19]. If only the studies are observed, the scenario is disappointing. Doctors, especially those closest to the patient,2 overestimate the prognosis and, in any case, find it difficult to be honest with the patient. But if we can attempt to resocialize the idea that mortality is natural and that finitude is an aspect that makes all human beings equal, the individual will feel less isolated in the process of understanding a disease, his/her actual options in the face of illness and the proximity of the end of life. In one of the works of philosophy most dedicated to reflections on death, Seneca reminds us that life was given to us with the condition of death, and thus, it would  According to Christakis and Lamont, doctors with less contact with the patient tend to give more correct prognosis, possibly because they have less personal investment in the outcome. Therefore, it is advisable that doctors themselves seek second opinions on the prognosis, including with more experienced doctors (CHRISTAKIS; LAMONT, 2000). 2

100

7  It’s Time to Talk About Dying

make no sense to fear it, since death is a certainty, and only what is doubtful is to be feared [20]. Acceptance of the end of life in its time, without vain attempts at prolongation, privileges life with the greatest possible dignity and not death. It is not about giving up, because one does not give up what one cannot have. On the contrary, it is about living the best life possible – until its end. Death needs to be brought to the surface, brought back into life, and not kept as its opposite. Renaturalizing death is thus resignifying life, returning to it an element that, although of its own essence, has been overshadowed. Death on the horizon makes one live a new life in its entirety and not only at its end. The confrontation of mortality – which seen in the other, is reflected in us, as equals – is always a difficult and generally unwelcome subject until it is inevitable. For this reason, at the end of his work With the end in mind, Mannix states: I’m sorry if you’re made sad, but I hope that you will also feel comforted and inspired. I hope you will be less afraid, and more inclined to plan for and discuss dying. I wrote this book because I hope we can all live better, as well as die better, by keeping the end in mind [21].

The importance of this book’s central theme – the idea of a right to hope in the legal context of health – only exists because discussing death matters, because dying deserves more attention than it has received from different areas of knowledge. We need to step back from the idea that dying is a mistake to be overcome at any cost. The human being is finite and that is not an evil; on the contrary, it is part of our nature and life as we know it. Living is way more important than merely (trying) not to die.

References 1. Schneiderman LJ, Jecker NS. Wrong Medicine: Doctors, Patients, and Futile Treatment. 2. ed. Baltimore: Johns Hopkins University Press; 2011. 2. Barclay S, Maher J.  Having the difficult conversations about the end of life. BMJ. 2010;341:c4862. https://doi.org/10.1136/bmj.c4862. 3. NHS.  Macmillan Cancer Support | Missed Opportunities: Advance Care Planning Report. https://www.coordinatemycare.co.uk/macmillan-­c ancer-­s upport-­m issed-­o pportunities-­ advance-­care-­planning-­report/. Accessed 05 Nov 2022. 4. Callahan D.  The Troubled Dream of Life: In Search of a Peaceful Death. Washington: Georgetown University Press; 2000. 5. Gawande A. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books – Henry Holt Company, 2014. 6. Mota JCA. Quando um Tratamento Torna-se Fútil. Revista Bioética. 1999;7. 7. Moritz RD, Ribeiro DC.  Caso clínico abordando aspectos sobre a terminalidade. Bioética: Revista Publicada Pelo Conselho Federal de Medicina. 2005;13:109–120. 8. Callahan D.  What Kind of Life: The Limits of Medical Progress. New  York: Simon & Schuster; 1990. 9. MCkeown T.  The Role of Medicine: Dream, Mirage, or Nemesis. New Jersey: Princeton University Press; 1979. p. 145.

References

101

10. Bobbio M.  O Doente Imaginado: Os Riscos de uma Medicina sem Limites. Tradução de Mônica Gonçalves. São Paulo: Bamboo Editorial; 2021. p. 166. 11. Delamothe T, Knapton M, Richardson E.  We’re all going to die. Deal with it. BMJ 2010;341:c5028. https://doi.org/10.1136/bmj.c5028 12. Kalanithi P. When Breath Becomes Air. New York: Random House; 2016. 13. Lopston P.  The Antinomy of Death. In: Malpas J, Solomon RC.  Death and Philosophy. Abington: Routledge; 1998. p. 139. 14. Soll I.  On The Purported Insignificance of Death. In: Malpas J, Solomon RC.  Death and Philosophy. Abington: Routledge; 1998. p. 22. 15. Ariès P.  História da morte no Ocidente: da idade média aos nossos dias. Tradução Priscila Viana de Siqueira. Rio de Janeiro: Nova Fronteira; 2017. p. 222. 16. Mukherjee S. The Emperor of All Maladies: A Biography of Cancer. 4. ed. New York: Scribner Book Company; 2011. 17. Nuland SB. How We Die: Reflections of Life’s Final Chapter. New York: Vintage; 1994. p. 224. 18. Chustecka Z. New Immunotherapy Costing $1 Million a Year. Medscape. 2015. https://www. medscape.com/viewarticle/845707. Accessed 05 Nov 2022. 19. Silva CHD. Quando o Tratamento Oncológico Pode ser Fútil? Do Ponto de Vista do Saber-­ Fazer Médico. Revista Brasileira de Cancerologia. 2008;54:401–410. 20. Sêneca. Edificar-se para a morte. Tradução de Renata Cazarini de Freitas. Petrópolis: Vozes; 2016. p. 49. 21. Mannix K. With the end in mind. Londres: William Collins; 2017. p. 6.

Annexes

1.1 Annex I: Personal Interview with Oncologist Mathias Bertram, Former Coordinator of the Oncology Center – Albertinenkrankenhaus Hamburg/Germany, on April 20, 2018 Cynthia: You commented about medicines that German oncologists couldn’t prescribe, under penalty of being forced to pay for them. Is there a list of medicines that can be prescribed? Bertram: In principle, everything that is off label is potentially risky. When it’s on the package insert, I can do whatever I want. But there are other conditions: when auditors tell me that the prescription was indicated, but not economically, I can be forced to pay. There is a requirement, for example, in the use of generic, patent-free drugs (there is a quota to use) so the total cost is not very high. Even more interesting nowadays is the case of biosimilars, such as monoclonal, where there are no generics. But there is also a quota for prescribing biosimilars in order to control spending. There is a body, the IQWIG – Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen (Institute for Quality and Efficiency in Health Care) – that makes evaluations of health technologies and publishes the data, which helps us decide on the release of substances and at what prices.1 Cynthia: We talked about the court decision on the Nikolau case (Nikolausurteil) – decision of the German Supreme Court on December 6, 2005 (1 BvR 347/98), in which it was determined that the health-care provider should reimburse treatment for a rare disease (Duchenne muscular dystrophy), despite the absence of evidence

  IGL, Gehard; WELTI, Felix. Gesundheitsrecht: Gesundheitssozialrecht, Krankenversicherung, Heilberuferecht. 3. ed. Munique: Vahlen Franz GmbH, 2017. 1

© The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. P. d. Araújo, Palliative Treatment for Advanced Cancer Patients, https://doi.org/10.1007/978-3-031-30776-8

Private

103

104

Annexes

of scientific effectiveness, since it is a serious life-threatening disease and because there is no treatment with recognized evidence available. Why do you think this decision did not create an “industry” in Germany? Actually, there aren’t many such decisions. For example, some plans deny access to the pet scan, and patients do not claim access to it in court. Bertram: Because it involves a “critical time” diagnostic examination – because the tumor can grow – I can’t wait until the Judiciary decides, so I work with a little less knowledge or I pay privately and try to get the health plan to reimburse me afterward. Cynthia: I have seen your website, https://www.onkologie-partner.de/, where there are texts about the functioning of clinical studies. I have two questions about this: the first is about where you came up with the idea of dealing with this on the site and the second is whether you have a lot of patients who want to participate in studies or actually participate. Bertram: The first question: what function does a text have on a website? It has several functions. I wrote this text many years ago and at that time I found almost nothing about it in German on the internet, and I decided to put it up, and I thought (and this is the main reason): during the consultation, there may not be time to explain all the facts in a very detailed way, so I recommend the text for further information. It is always available so I have time to talk about other things with the patient. Besides, it’s about “searching and optimizing”: when does Google find a website? When it is big, inter-referenced, its credibility is high, and it has a lot of content – that is also why I write. Regarding the second question: participation is average. But we think it is very important that the studies take place. Cynthia: You said that communication skills are an important discussion in oncology in Germany. What makes you say that? Is there a lot of material in this regard? Bertram: I am not in a position to make general statements, but I can say what I see: I have two children, both are studying medicine in Germany, and both are studying the subject prominently in 2018 – my daughter in Hamburg, my son in Munich. So, it can be argued that the idea of communication skills has arrived in medical school studies – I know that, I see that, and I’m sure. I believe that recent generations display this initiation. But if I look at what real life is, in the hospital, in the ambulatory units, then sometimes I’m not so sure, due to the economic pressure. I believe that communication demands time, environment, tranquility, and time is short. That’s why I tend to believe that time pressure, that is, economic factors negatively affect good communication – because time is money. Cynthia: I read some articles that say that most patients receive palliative care very late. And I have this idea that things are not like that in Germany. I wanted to know your opinion on it and, on this point, why you think it doesn’t happen here. Bertram: The idea that palliative care arrives too late has been very widespread in recent years, especially in studies from the United States. It has been demonstrated

Annexes

105

that the so-called early integration of palliative care can prolong survival. I did not go into depth about the study, but I believe that it is extremely important to ask what it is about exactly and I believe that this may have more to do with the way oncology works in the United States, where it is believed that “the more the better” in relation to medicines. When integration with palliative care or support starts from the beginning, it can mean that these patients live in chemotherapy for three years, or even more (e.g., breast). Therefore, I believe that this discussion does not apply here, since we have been doing palliative care integration since the beginning (“early integration”) for a long time. Cynthia: Of all the patients I talked to in Germany, only one reported feeling pain or having problems with chemotherapy, which is in contrast to everything I read and what I usually hear from patients in Brazil. What is the reason for this? Is it a coincidence? Bertram: Before you came, I said by email, that there might be a selection bias in your research – patients who agree to participate in the survey (positive selection). Another explanation may be that we are trying to implement an intensive action with pain medication and when it works you can achieve a lot. Cynthia: This question is very important to me because I notice that some patients resist reporting pain for fear of no longer being able to receive chemotherapy. Bertram: So you mean about patients who hide the problem. I don’t know. I can’t know if they talk about everything and there are several studies that show that there are issues that are not discussed in medical consultations, but that patients take to other channels. There is always a moment when the nurse says “Doctor, you don’t know, but we heard this from patient....” What I can say is that I hope that the structure of our organization here at the clinic will enable me to be aware of the problem. But there is no solution. There are always patients with whom communication is not optimal, but you can at least acknowledge that. Cynthia: Are health plans already thinking about funding or are they already funding immunotherapy? Bertram: We need to define what is meant by immunotherapy. If we are talking about inhibitors, there are, in principle, two important types: ipilimumab and nivolumab, and in this case, I can say yes, they are financed as indicated. They are drugs like others, subject to the conditions we have talked about above. There is no need to make a special category. The important issue is that suddenly we can see a great improvement in patients who before had no chance, and this is a special medical issue. And patients tolerate them quite well. But they are drugs; you have to see who can have access to them, how good they are, and what the effective benefit is among other options.

106

Annexes

So we can say that if the acceptance and tolerance of therapy are good and if effectiveness is significant, then the high cost is justifiable. But everything must be evaluated. I believe that the explosive substance is still to come, car T-cells, therapy for one person that costs approximately half a million dollars. And that is genetic engineering. We still don’t know what that can do; it’s a totally new field, individualized immunotherapy. All the major universities are researching this area. Universities are doing research in this area. It will probably be a new category of operating principle and costs but also efficiency, and it will lead to major discussions on how to move forward, even in countries with more resources for health such as the United States or Germany. Cynthia: We talked about the concept of “need.” In a system where there are not enough resources, how necessary are the new palliative chemotherapy drugs, such as monoclonal drugs, when we know that many will not even have the minimum in terms of health? I know that a State can spend all the resources on health it wants, and it still not be enough. So, in terms of health systems, can this be considered “necessary?” I know this question is more philosophical than medical. Bertram: That is certainly more philosophical than medical. I wrote to you about these thoughts on the word “necessary.”2 I think this is important, because in Germany, I often see how important terminological discussion is, about what is “necessary” not existing in decisions concerning allocation. The  Text written in German directly to the researcher by Dr. Mathias Bertram and translated to English: Necessary does not exist in allocation decisions. The justification that medical intervention is necessary to ensure that the financing of this measure should not be questioned is incorrect logically. By its very nature, each medical intervention (associated with the consumption of resources) is a consequence of a decision that could also have been taken against the intervention. The decision to finance and therefore intervene confirms that the desired success is sufficiently probable, the value of the success is sufficiently high and the price is in a fair relation with the other two factors. The intuition that a measure as necessary is, as a rule, merely a reflection of the fact that, within the financing system, the evaluation is not controversial, and that there is consensus that, at a fair price, a sufficiently good effect will occur with sufficient probability. If the surgery of an acute appendicitis is called necessary, it means that there is a generally uncontroversial understanding that the cost of this surgery is in such a good relation with the benefit that it is not necessary to discuss the provision of this resource. Consequently, systems that have few resources to distribute tend to pay for measures that have a high cost benefit. Thus, what is incorrectly called “necessary” in colloquial language is, in fact, a political decision that should be decided differently in societies with varying resources. The high-priced measure of saving a child who is born premature may be considered appropriate in a rich society, even in competition with funding for other purposes, but it could be seen in a poor society as an intervention that cannot be made available nationwide because prematurity is classified as destiny and therefore not only are the costs relatively high, but the value is assessed as relatively minor. 2

Annexes

107

implication of saying that something is necessary is that you don’t question it anymore; you don’t have to argue. If I say it’s “necessary,” then I don’t need to justify it anymore. I believe this is a psychological process, but also a logical one involving ethics, philosophy, and not medicine. I believe that we need to think about why we consider something necessary. In German, this term means “remove the emergency,” and at this point, we must ask ourselves “what emergency?” and “what is an emergency?” and my argument is: the emergency is relative. So what needs to be understood is that what is to be achieved/reached is relative to the conditions of the system. There are systems where something is unnecessary and others where it is absolutely necessary. When we say that it is absolutely necessary, we don’t discuss it anymore, because we agree. It is the case of the surgery to remove the appendix: it is cheap, it is effective, it saves lives, and this is very clear. We want it. So we say it is necessary, but behind this, we are saying that in our system with our funding and our availability, this is a good use of resources. It becomes a problem when in another not so well financed system the limit is different. There are things about which everyone says “yes, of course, we do that,” but maybe on an earlier occasion you had the option to distribute the resources differently, and this time comes in different ways for different systems. So the decision is relative; what is considered necessary is relative. This is much more of a political issue/decision. Regarding palliative chemotherapy, you can basically estimate and think about the effect that can be expected from the use of a resource: do I want it or do I not want it? And, of course, there are extremely effective palliative measures in oncology, which have enormous value and whose costs are not so high. For example, palliative radiotherapy in oncology is usually very cost-effective. In my opinion, you cannot put age limits, for example, that no one over 75 can have access. I also believe that you cannot limit the line of treatment: if the first and second do not work, there is no third. This is complicated, and you have to accept the complexity, but there are probably already limits of effectiveness in the evaluation. Not in palliative oncology, but in the case of other measures, 2% more life for ten years is not cost-effective, and so you can say again: well, if they are cheap, maybe that’s okay, but if they are expensive, they would have to be more effective. The health-care system has limited resources, and in reality, a lot of money is spent on ineffective drugs. In palliative oncology, you have to ask the question: can I finance this? Or I could, for example, finance a vaccination campaign that works totally differently, but that can also be very effective. Drugs act in different ways, can be very

It also follows that fair decisions, when they are at the expense of a community, must take into account the importance/significance of an intervention outcome in context with other outcomes in other areas of the system that will then no longer be funded. These decisions, often only immanent, are ultimately political in nature. The money spent on a high-cost cancer drug with little improvement in effect compared to a cheaper one (improvement will occur with low probability) cannot be used at the same time for a vaccination campaign or for the provision of a rescue helicopter.

108

Annexes

effective, and need to be compared and weighed against each other, with the input of all involved.

1.2 Annex II: Personal Interview with Retired Physician and Researcher Peter Wise – Roquefort Les Pins/France, on June 5, 2018 Cynthia: As you already know, a very important aspect of my work is that studies show – and I have also noted (in my empirical research) – that most patients, or at least a significant number, who are in palliative chemotherapy do not know that this treatment cannot provide them with the benefit they expect. They expect a cure when treatments can, at best, give them a few weeks more life, and often without quality of life. Do you think this can be changed and in what way? Peter Wise: I think you change this in two different ways. The most important is simply to talk to patients about what to expect. There has to be a way that patients can be educated, if I can use that word, and in order to understand, that education needs to be written and needs to be read. In other words, you have to write the information for patients who then read it – people remember things better when they are written than when they are spoken – and then you talk to them to see whether they understood what was written. And I think that process of writing and talking is necessary for every patient and if you’ve got that, then you know you have a patient who has been informed and makes what is called an informed choice. And it has to be a choice; it can’t be seen as a routine thing and shouldn’t be seen like that, even when the patient expects the treatment – because they say: “I have a cancer that has spread – the drugs are here to treat the cancer that has spread – therefore I must have the treatment.” That sort of pseudo logic does not apply. The patient must not feel that they need to accept the treatment. I think it has to be done by the treating doctor too, it mustn’t be done informally. At one stage I was thinking that perhaps you could actually have this process done by a trained helper because metastatic cancer is so common and it does require patient discussion; perhaps you could have health educators doing this, but I think probably not – I think it does have to be doctor himself or herself. And it has to be personalized to some extent because all patients are a bit different. But I think it needs that transaction to be real. Cynthia: I have noted through my empirical research, when I talked to patients in palliative chemotherapy, that doctors often realize that patients do not understand their actual chances from the treatment and yet still do not clarify the point. And I saw certain misconceptions about statistics: for example, when a doctor said there was a 19% chance of an effect, and the patient took it to mean a 19% chance of being cured. Do you believe that doctors (i) close their eyes and just don’t want to see that the patient has a mistaken expectation; or (ii) do you think that these patients

Annexes

109

sometimes don’t talk to their doctors in the way they talk to me or other professionals, for example; or (iii) that doctors try to clarify matters, but patients simply don’t listen; or (iv) that doctors don’t want to dispel patients’ hope or maybe give up the treatment when they realize its effective potential? Peter Wise: I believe there are several explanations. Patients who don’t want to accept the fact, whether it’s what the doctors tell them or what they read; then doctors who don’t necessarily want to understand that the patient is a little reluctant; and doctors who want to treat, with the wrong motivation, as they see themselves as a treatment factory, basically, and then the act of informing becomes just a routine. The terms of consent that patients sign are a standard form, not an individualized one. This also leads to confusion, because it seems to be just a formality. It is very quick, very informal. Cynthia: I believe that a lot of the time doctors just say – “to receive the treatment, you have to sign here.” Peter Wise: Exactly. Studies show that it is merely a formality, not a detailed patient approval. Perhaps things have improved, since the article that is constantly quoted in this sense is from 2015, and three years have already passed. Have you seen anything recent? Cynthia: No. Peter Wise: The idea is to check if there has been any evolution in the literature on it, or you won’t be able to evaluate any (eventual) progress. Cynthia: What I can say is that from what I know and from the conversations I have had with experts on the subject, there are still no studies in that direction. I believe that we are still behind in that sense. Peter Wise: I believe that what is really important is that oncologists are critical about themselves: are we doing it right? It’s got to be done in every country. There has to be some idea of whether you’re achieving your aims. And it’s more important than many other things in oncology: making sure that the patient is fully aware of what is going on. I had an idea, which I put to various people, that when a patient is being evaluated for cancer drug therapy, along with the oncologist, the general practitioner should also be present, someone who knows the background of that patient because, to be very honest, the majority of oncologists won’t know, unless they really take the time to do it – which I don’t think they will – to look at the family background, the motivations, the difficulties that the person may have had with their disease etc. the way that the general practitioner does, the family doctor. And they told me that they won’t come because they are too busy. In fact, they will not go along with any plan that involves extra work. They say their job is to “fix up” the patient, and they expect other people to accept what they say as being necessary. They are too busy to come along and provide what is, for me, the

110

Annexes

all-important background, which is the family situation, the totality of it: who is at home, who is caring for the patient and so on. Cynthia: What do you think about using progression-free survival data as a benefit? Peter Wise: Progression-free survival is one of the possible measurements that are done based on X-ray/scan changes [surrogate markers]. And you can really summarize it like this, which is “lovely,” because it’s a figure or a number, and the numbers can pushed into statistics, which can become published articles. It’s as simple as that. But what has been shown is that there is no necessary relationship between those measurements and how long or how comfortably a patient lives. There are only two important things: overall survival and quality of life. Now, you can go one step beyond that and say that sometimes medications are approved based on progression-free survival or something similar, because they say that this is a real need in cancer medicine that we find a drug and this drug seems promising, from the PFS, and we feel we should use it. And the FDA says: “Yes, ok, we’ll give the provisional approval, but there has to be follow-up and you tell us what the overall survival turns out to be.” So, one of three things happens: first of all, they may not do this follow-up at all. Secondly, it is possible that the figures they provide are dishonest, due to the CROs – contract research organisations. The pharmaceutical industry used to do their clinical trials with university hospitals and clinics. They did not get their results quickly enough. So the idea came up twelve or fifteen years ago, to do it through “contracted research organizations,” which are organizations that are run specifically for trials. They are contracted by the pharmaceutical companies and respond to them alone, and they carry out the studies with a university hospital in Europe or, more likely, they arrange to do the trial in another country: in Africa, Brazil, India. Why do they do it in these countries? Because many patients can’t afford the drugs and are very happy to participate in a trial. These organizations were investigated by a Dutch team, which found that the results were not honest and that these studies were being done “below the radar,” that is, the results presented cannot be monitored. Cases of fraud came to light, some with cancer drugs, and some with other drugs. What we know is that from time to time they are not honest. The third reason is the delay in obtaining overall survival measures, which is why they use these substitutes, which should not be used as definitive landmarks in drug power. Cynthia: How important is palliative/supportive care? Peter Wise: I think it is all important. It’s not a question of whether you give supportive care or you give drugs. Unfortunately, it’s like a default situation – either we do one thing or the other. It’s got to form a part of every patient with metastatic disease. So you need a structure, an umbrella organization that has teeth so that every patient has access.

Annexes

111

You need to have people in the front line, who are the nurses, carers, who know how to look after patients, who know how to look after wounds, people who are trained for this. And then you have to have other people on the team who can look after the psychological and sociological aspects of the dying person and his/her family, addressing questions like whether the patient is in the right place in the house and has the necessary space – light, warmth, and a view of the outside. It should be universal, this supportive care, and as I said before, it should involve the general practitioner, from the moment it is decided to give cancer drugs. I believe that patients need to understand what palliative care really means. They feel that while the patient is in the hospital doing treatment, he is being cared for. If people understand that the palliative care team can do the care function as well as the oncologist and can do it at home, where the patient feels better, they are more likely to accept it as a more desirable option than treatments. Cynthia: Do you have any expectations for immunotherapy or any thoughts on it? Peter Wise: If I had to say based it on previous excitement for new drugs, I would say that there will be some cancers that it will help, and there will be others for which it will be futile. There will be other cancers in which it will be discovered that the side effects are greater than the benefits. I keep what I would call a healthy doubt. I believe that there will be an advance, but not perhaps as much as they hoped. Cynthia: Probably not, because they are hoping for so much... Peter Wise: We come back to the question of hope. You have to temper your hope with reason. Cynthia: What do you think about the right to try? Peter Wise: In general, it’s wrong. Patients don’t actually have a right to try. They have the right not to give up, to want something else. The actually trying itself is irregular, for various reasons. Number one, it diminishes the number of patients who go into trials and participate in research, and I think it is very important that more patients participate in trials; the quicker you have more people participating in trials, the quicker you have an answer. And you don’t learn anything from “trying” a patient: first, you don’t know if the patient really benefits from whatever they have; they may suffer due to the side effects, the results are not systematized, therefore it doesn’t add anything to our knowledge about what that drug is or is not capable of doing. And it leads to abuse, not from the patient, who has a natural wish to try, but by the doctor, who can lead the patient into trying. Why would the doctor do that? As I said, three reasons: number one, entirely honorable, wanting to help the patient and believing that through all his knowledge of oncology this drug might work. Number two, the doctor is doing it out of a feeling that something must be done. The patient says: do something, doctor. Even if he is not convinced, he does it almost like a placebo. Number three, he does it for money: he gets it from the drug company or he gets it just because he is an oncologist, so he buys the drug cheaply and sells it to the patient for a profit. For any of these three reasons, it’s bad. I don’t believe that the right to try should exist.

Index

A Advanced cancer, ix, 3–5, 25, 26, 28, 34, 36, 37, 65, 66, 94 Autonomy, ix, 4, 5, 9, 23, 24, 34, 36, 43, 94, 97, 98

Evidence-Based Medicine (EBM), 9, 19, 39 Expectations, ix, 4, 5, 10–12, 14, 16, 17, 19–21, 25, 36, 37, 41, 43, 45, 46, 53, 54, 65, 70–72, 98, 111

C Cancer, ix, 1–6, 15, 19, 21, 25–28, 31–33, 35, 36, 42, 93–95, 98–100 Communication, 5, 33, 36, 44, 60, 62, 66, 70–73, 96, 104, 105

H Health, ix, 2–6, 9–17, 19–21, 24, 26, 27, 31, 33–35, 37, 39, 41–44, 94–96, 98, 100, 103–106 Hope, ix, 3–6, 20, 24, 27–46, 96–100, 105

D Death, 1, 2, 6, 11, 17, 23–25, 31–34, 39, 40, 93–100 Decisions, 5, 9, 13–17, 20, 22, 23, 25, 26, 30–32, 35, 42–44, 94, 95, 97, 98, 103, 104, 106, 107 Dignity, ix, 4, 5, 15, 16, 23, 42, 43, 96, 99, 100

I Incurability, 72 Informed consent, 45, 55–58, 60, 67

E End of life, ix, 3, 5, 6, 19, 33, 36, 46, 57, 60–62, 66–68, 70, 72, 73, 98–100 Ethical reasons, 51

L Legitimate expectations, 12, 14, 16 Life with quality, 78 M Medical futility, 20, 21, 23, 25, 94 Misunderstanding, 5, 70, 71

© The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 C. P. d. Araújo, Palliative Treatment for Advanced Cancer Patients, https://doi.org/10.1007/978-3-031-30776-8

113

114 P Palliative care, ix, 6, 13, 14, 23, 62, 66, 72, 104, 105, 111 Palliative treatments, 5, 21, 25, 65, 81 Patients, ix, 1–6, 9, 13, 14, 17–28, 31–37, 39–46, 93–99, 104, 105, 111 Plans, 12, 94, 100, 104, 105 Prognosis, 1, 3–5, 14, 21, 26, 27, 32–34, 36, 37, 96, 99 R Right to health, 3–6, 9–46, 81–83, 89

Index Right to hope, 4, 19–46, 51, 96, 100 Role of medicine, 95, 96 S Society, 9, 11–14, 16, 17, 20, 27, 32, 42, 93, 96, 98 Subjective rights, 15–17, 38 T Treatment, ix, 1–6, 11, 14, 15, 19–28, 30–37, 39, 41–46, 94–96, 98, 99, 103, 104, 107