Palliative Treatment for Advanced Cancer Patients Can Hope
Be a Right?
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Cynthia Pereira de Araújo
Brazilian Federal Attorney General’s Office
Belo Horizonte, Minas Gerais, Brazil
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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 phar-
maceutical 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 ques-
tions but also poses further ones that are not so easily answered – a real challenge to
society.
Promenada 27, 7018 Films, Peter H. Wise
Waldhaus, Switzerland
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 chemo-
therapies 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 can-
cers, 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 doctor-
ate. 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 possi-
ble 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 donat-
ing 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 proj-
ect 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 chap-
ters of his important work “How we die” [1] to addressing cancer, the “mortal ill-
ness 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 fun-
damental 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 addi-
tion to the differences between genes and biochemical mechanisms, and among the
patients themselves – is mainly because this set is closely linked to the aging pro-
cess [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 expe-
rience 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 hav-
ing cancer.
The notion of cancer as affliction only emerged in the twentieth century, taking
the place of tuberculosis as something ominous, abominable, which depleted vital-
ity 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 1
C. P. d. Araújo, Palliative Treatment for Advanced Cancer Patients,
https://doi.org/10.1007/978-3-031-30776-8_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 popula-
tion [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 major-
ity 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 compli-
cations 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 chemo-
therapy 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 meta-
static 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 prescrip-
tions 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 guaran-
tee 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 inter-
vention 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 func-
tioning 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 mani-
fest, its normative consecration would require it to be considered an implicitly affir-
mative fundamental human right. Its most probable source would be some sense of
human dignity.