Palliative Treatment for Advanced Cancer Patients

Description:

This book presents an important reflection on the concept and limits of the Fundamental Right to Health as opposed to a supposed “Right to Hope” in the context of the treatment of patients with advanced cancer. The central idea of the work is the question of whether and to what extent patients with advanced cancer have the right to legally demand a palliative treatment whose efficacy has not been proven from the point of view of the desired objectives. The book demonstrates how hope cannot be subject to legal protection and, also, that, even if theoretical-legal reasons were not sufficient for the absence of an abstract right to hope, ethical reasons would be. The work concludes that the best palliative care, rather than palliative treatment, guarantees the best right to health for advanced cancer patients, especially in terminal cases.

In addition to this theoretical discussion, the book also presents the results of a qualitative research the author conducted with 48 advanced cancer patients in Brazil and Germany to investigate their expectations towards chemotherapy. This study has confirmed that many patients decide to undergo often toxic and exhausting treatments, unrealistically believing that their cancer is curable or that, as long as they continue with a course of chemotherapy, cancer may be beaten.

Palliative Treatment for Advanced Cancer Patients: Can Hope Be a Right? will be of interest to health professionals and social workers working with advanced cancer patients, as well as to researchers in the fields of public health, bioethics, medical ethics and health law, especially those interested in the growing interdisciplinary field of end-of-life decision-making.

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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.

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