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Sheldon Rubenfeld and Daniel P. Sulmasy (eds.)
Lexington Books, 2020
358 pp, hardcover
Also available: e-book
RRP $US120.00, £92.00
I found this a remarkable book, the best that crossed my desk in 2020. What sets it aside is, I think, the fact that many of the North American physicians and bioethicists who contributed to it had participated in a 2018 educational tour to Germany, sponsored by the Center for Medicine after the Holocaust (CMATH), which involved intensive and detailed study of the medical practices both before and during the Third Reich.
The book has two parts. The first concerns the history and current status of physician-assisted suicide (PAS) and euthanasia in Europe. The Introduction, written by Rubenfeld, outlines the history of euthanasia in Germany both before and during the period of National Socialism; having not made any special study of this period, I found some of the things discussed quite disturbing. Another discussion of euthanasia in Nazi Germany notes the emphasis they placed on teaching medical ethics, which should perhaps sound a warning: that ethical reasoning can be corrupted and that teaching medical ethics is, in itself, no guarantee of the moral integrity and humanitarian quality of the physicians who are taught. A study tracing the use of the term euthanasia from antiquity to the present time illustrates a slippery slope that began with the right to die and ended with the extermination of life unworthy of living. The chapter on Holland deals mainly with NICUs and does nothing to address all the abuses the Dutch themselves have reported. Possibly the best chapter in the book is by Stephan Sahm of the Frankfurt University Medical School who sets out the case against PAS and euthanasia. One by one he quietly and calmly debunks the tenets of the advocates of euthanasia and PAS. Untreatable and intolerable symptoms? These relate to lack of knowledge about and experience with palliative care, which can always offer symptomatic treatment; and the studies show patients seek assisted dying because of social deprivation and fear of loss of independence more than the presence or fear of physical ailments. Equating palliative sedation, which is symptom-guided and reversible, with euthanasia? And the inherent contradiction in the sacred observance paid to patient autonomy, where you only get euthanasia or PAS if the doctor says so.
Part II is about physician-assisted suicide and euthanasia after the Holocaust. The first contribution is based on the premise that physician aid in dying (PAD) is sometimes right although usually wrong; this concept, helping the few in real need, may have merit but the accelerating numbers and the rapidly widening criteria of eligibility wherever PAD has been legalised suggest to me that it is something we are not capable of achieving. Timothy Quill states that learning about unethical practices in Germany and elsewhere was “sobering and enlightening,” but it seems to have not altered his views that PAD should be available; he emphasises the importance of safeguards—the carefully considered conditions put in place to reassure us no harm can ensue, but which have been ignored or failed to work wherever PAD has been legalised.
There is a chapter on race and PAD in the USA, describing the involuntary euthanasia of at least eight bedbound mostly African American patients at Memorial Hospital in New Orleans during Hurricane Katrina, rather than arranging for their evacuation; so much for the safeguard of voluntary consent. There is a good discussion of how vague the meaning of patient suffering has become, which underlines the almost inevitable problems that occur with legalisation of PAD based primarily on patient suffering. Diane Meier’s chapter argues that the legalisation of PAD would be unwise because the safeguards purported to prevent misuse are unrealistic and demonstrably ineffective, because physicians are poor gatekeepers and have been shown to be not able to protect the most vulnerable patients, and because public policy must rely not only on majority opinion but also on assurances that patients will be protected from harm. A discussion of the value of life versus the principle of autonomy concludes that PAD is wrong both from inherent moral issues as well as from practical and consequential points of view; any conflict between the value and sanctity of life and the principle of autonomy “ought to be resolved in a balanced way without resorting to the extreme total negation of the value of life.” There is a detailed repudiation of the Groningen protocol that comprises the five necessary criteria to establish ethical acceptability for mercy killing of infants in the Netherlands. Others defend current practices as having none of the bad features seen during the Holocaust, although I note the thousand cases per year of involuntary euthanasia to which the Dutch admit, the story from New Orleans cited above, as well as the more widespread evidence that people are being classified as having lives not worth living. The final chapter, written by Sulmasy, is about power, authority, control, death, and the patient-physician relationship and makes the point that “the German euthanasia programs…can best be considered a medical and philosophical movement that was given the force of law by the Nazis, not a totalitarian regime’s alien ideology forced upon an unwilling profession.”
I thought this book was both outstanding and disturbing. Each contribution is thoughtfully prepared and well referenced. I thought that discussing today’s issues regarding PAD against the background of the Holocaust, when things really did go wrong, was instructive. Whatever your views on PAD, I think you will find this book interesting and informative.
My review of the published literature on euthanasia and PAS is available on the IAHPC website here.
Sheldon Rubenfeld is clinical professor of medicine at Baylor College of Medicine in Houston, Texas, and founder of the Center for Medicine after the Holocaust (CMATH). Daniel Sulmasy is professor of biomedical ethics in the departments of medicine and philosophy and acting director of the Kennedy Institute of Ethics at Georgetown University in Washington, DC. Of the 20 contributors, 12 are from the USA, five are from Germany and one each from Canada, Holland and Israel.
(Roger Woodruff, December 2020)
Kindle Direct Publishing, 2020
172 pp, softcover
Also available: e-book (Kindle)
RRP $US7.50 £6.18
As anyone who reads this newsletter knows, Katherine Pettus is IAHPC’s Advocacy Officer, and this is a collection of her stories, blogs and reflections regarding palliative care. The peripheries in the title are the boundaries, the frontiers.
I was taken on home visits to see HIV patients dying of cancer in Ethiopia and Uganda who, except for the palliative care services, would remain hidden, invisible to a medical system designed to cure. In India, she talks of Dr. Raj’s Declaration by the People of Kerala regarding patients’ rights to access palliative care. She discusses the suffering related to the lack of morphine and how the problems are slowly beginning to be overcome. In Peru, El Salvador and Guatemala she talks of some of the bureaucratic and political barriers. What’s happening in Colombia, Uruguay and Argentina. The plague of HIV/TB/HCV in Port Moresby. The use of “expert patients” as volunteers in Kawempe. The prohibitive cost of medications in Panama City.
Pettus advocates strongly for the global palliative care movement, and airs her hopes that palliative care will be better regarded in a post-pandemic world and that we will not slip back into a world in which palliative care is sidelined. She discusses the importance of access to essential palliative care medications and the fears regarding opioid diversion and abuse, and includes her own 2014 submission to the Commission on Narcotic Drugs. Palliative care is discussed in the context of the UN Agenda for Sustainable Development, which provided me with some insights into UN deliberations (that in general I find a bit mind-numbing). There is African palliative care and the ethos of hospitality. Should there be religionless palliative care services, publicly- and insurance-funded?
In her more reflective pieces, she likens palliative care to a valuable pearl—an ethic, an interdisciplinary sub-speciality, not just a new element that can be added and stirred into health systems. She underlines the need for true spiritual care, unrelated to any religion; could this simply be compassionate, intentional presence? Her reflections on the Feast Day of the Holy Innocents (commemorating Herod’s legendary infanticide) relate to all the preventable childhood suffering we see in the world. Should there be healthy dying or (continued) death phobia? She is not shy of discussing some of her concepts in the terms of her Christian faith (I note she was formerly married to an Episcopal minister), but at no stage in her discussion of the advancement of palliative care does she advocate the need for anything to do with religion.
And there is so much more! I did not agree with everything she said, but I found it interesting. And she made me think! I would happily recommend this to anyone associated with palliative care.
There is a short biography of Katherine Pettus on the IAHPC website. Proceeds from this book will assist the educational programs for nurses at the institute, Hospice Africa Uganda.
(Roger Woodruff, December 2020)
Kate Aberger and David Wang (eds.)
227 pp, softcover
Also available: e-book, whole or by chapter
RRP €90.94 $US109.99 £74.99
This is a collection of 31 case histories of patients with terminal or potentially terminal illnesses, written by a variety of palliative care-trained specialists including neurologists, nephrologists, emergency physicians, surgeons, intensivists, and obstetricians, as well as some palliative care doctors. Dr. Susan Block’s Foreword sums up what you get: “Each case is followed by two different pathways—the conventional approach to treating the disease, in which considerations of diagnosis, treatment options, risks, and benefits and potential impact on morbidity and mortality determine therapeutic decisions, and the palliative approach, in which these considerations are balanced with an equal focus on the patient’s goals and values, acceptable and unacceptable tradeoffs, quality-of-life considerations, and family needs.” So it is providing an alternative to the knee-jerk, do-everything medicine to which too many of our patients are being subjected.
I particularly liked the discussions of communication strategies—what to say and what not to say. There are lists of what you might consider saying when talking to the patient and family. There were several offerings to replace the dreaded “There is nothing more that can be done.” Palliative symptom management techniques are also emphasized and there is a bit about the “art” of treating the patient.
The cover declares, “It is an invaluable resource for non-palliative trained clinicians who wish to strengthen their palliative care skills.” Great! But I have never had a consultant in some other specialty tell me they wanted to learn more about palliative care.
The cases in this book are described as “practice changing.” I can think of any number of consultants who are top-flight in their field, but whose practice might improve with some of the things described in these stories. But what they are doing is very successful, thank you, they consider it to be world-class, and they would have no motivation whatsoever to read this stuff. I can feel the silence and contempt if I offered a copy to a cardiologist or a neurosurgeon.
They say that early referral to palliative care does not limit other care. Hooray for that! We have been advocating for the “integration of the ethos, knowledge and skills of palliative care into the standard care of patients with progressive disease” (as per Bourke et al, reviewed last month) for decades, but it is anything but standard practice. The managing consultant knows what’s best for the patient and prefers not to have those palliative care people muddying the waters and talking about death and dying.
I am full of admiration and hope that this book succeeds. What’s the saying that it starts with a small step…? People who work in palliative care will enjoy it and get a few pointers about working alongside palliative care-sympathetic specialists from other fields. It is not intended as a textbook and somewhere it suggested one should read it as a collection of short stories.
Kate Aberger is Director of Palliative and Geriatric Medicine, St. Joseph’s Health, Paterson, New Jersey. David Wang is Director of Palliative Medicine, Scripps Health, San Diego, California. There are 49 contributors, all from the USA
(Roger Woodruff, October 2020)
Lexington Books, 2020
160 pp, hardcover
Also available: e-book
RRP: $US85.50 £69.00
I had to admit the name Paul Ricoeur didn’t ring any bells, even though this book was one of a series of seven volumes regarding his work. Wikipedia informed me that Jean Paul Gustave Ricoeur (1913-2005) was a French philosopher acclaimed for his work on hermeneutical phenomenology. I was not sure whether I was on more secure ground.
The term “narrative medicine,” originally introduced by Dr. Rita Charon, is to do with “the desire of clinicians to cultivate their skills in attentive listening and close attention to the interpretations of embodiment provided by patients.” Narrative medicine is a mode of clinical practice structured on the belief that a close reading of literature can sharpen a clinician’s ability to attend to patients in the clinical encounter; patients may also find opportunities for expression and processing their experiences in health care through narrative practices. This book examines practices of narrative medicine and moral identity for end-of-life patients, for both clinicians and patients, with special attention given to the work of Paul Ricoeur that addresses patient identity and health care ethics.
In the opening chapter, Flanagan discusses the historical changes in medical education that saw the dawning of evidence-based medicine, but paid less attention to the patient’s experience as a valuable source of information and connection in the clinical encounter. In other words, the communication skills needed to engage in meaningful dialogue are prioritized less than physical care for the body.
The second chapter is about the concept of patient identity as it exists in the hospice model of care, with specific reference to Cicely Saunder’s concept of “total pain” and the importance of addressing the religious and spiritual dimensions of suffering. The next is about life review and the spectrum of emotional experiences that may be generated.
Then Flanagan takes it one step further and discusses the role of narrative medicine for those patients who are unable to communicate due to verbal or cognitive limits, stating that “the concept of patient identity and the practices of caregiving described by Paul Ricoeur and Cicely Saunders transcend the need for higher-level cognition commonly associated with narrative medicine.” It is about applying the concepts of narrative medicine to patients with compromised verbal and cognitive abilities, with a discussion of “the narrative selfhood” and using Ricoeur’s view of “social selfhood.”
If you work in palliative care and are interested in narrative medicine, meaningful communication, or delivering holistic care, you will find this book interesting. I was a little challenged by what she had to say about the patients with verbal or cognitive impairment, but I learned a bit about hermeneutical phenomenology.
Tara Flanagan, PhD, is assistant professor of religious studies at Maria College in Albany, New York. She also holds a clinical appointment as hospice chaplain at New York-Presbyterian/Jansen Hospice and Palliative Care.
(Roger Woodruff, December 2020)
Lorraine Holtslander, Shelley Peacock, and Jill Bally (eds.)
272 pp, softcover
Also available: e-book
RRP €69.54 $US79.99 £54.99
This book aims to provide a resource for registered nurses working in hospice palliative care in peoples’ homes and in the community. It aims to provide relevant information on trends, theories, and models of care for hospice palliative home care; to describe the concept of hope and its relevance in providing care; to explore the role of the family caregiver and how to best support them; to analyse the “palliative approach to care” for people living with conditions like dementia and heart failure; to evaluate the needs of families with children with life-limiting conditions; and to describe bereavement care for family caregivers.
The book is divided into four sections. The first provides an introduction and overview of this type of hospice palliative home care, including reports of what is happening in a number of different countries as well as Canada. The second section is about evidence-informed nursing interventions, including the Finding Balance Intervention, the Keeping Hope Possible Toolkit, the Reclaiming Yourself tool (aimed at caregivers, particularly those caring people with conditions like dementia), the Living with Hope Program, and a psycho-educational intervention for caregiver burden called COPE (creativity, optimism, planning, and expert information). The third section is about innovative approaches and includes discussions regarding dementia, heart failure, patients in long-term care, people in prisons, and dying children. They also describe the ALERT (ask, listen, engage, reflect/reorient, and time) model to assist patients and caregivers dealing with telemedicine and the internet. The final section is entitled Looking Forward and is a summary of what has already been discussed and what it may mean for the future.
Thumbing through the chapters, I found it to be clinically practical and there was reasonable use of headings, tables, lists, and interaction/clinical pathway diagrams. Each chapter seemed adequately referenced. I thought an index would have been useful.
The editors are from the College of Nursing at the University of Saskatchewan in Saskatoon, Saskatchewan, Canada. Of the 30 contributors, 20 are from Canada, three each from the UK and USA, and two each from New Zealand and Scotland.
(Roger Woodruff, December 2020)
Nathan Emmerich, Pierre Mallia, Bert Gordijn, and Francesca Pistoia (eds.)
386 pp, hardcover
Also available: e-book
RRP €99.99 £74.95 $US119.99
This is a collection of bioethics essays put together by the ENDCARE project. Google informed me this was a group led by the University of Malta for “Harmonisation and Dissemination of Best Practice, Educating and Alleviating concerns of Health Care Professionals on the proper practice of End of Life.”
The opening chapter discusses the concerns of the group. First, that some terminally ill patients were not receiving appropriate pain relief, which they attributed without hesitation to concerns about hastening death by members of the Catholic faith; a number of other possible explanations crossed my mind. The second, which surprised me, was that this volume would steer clear of euthanasia and assisted suicide, preoccupation with which had sidelined other important end-of-life care issues. This was followed by a long discussion about the distinction between end-of-life care and palliative care, which I thought was clinically essentially meaningless.
The book is divided into three sections. The first covers theological and philosophical issues. There are discussions on the mutual relevance of human rights and end-of-life care (“rights talk today is the trumping vocabulary”), the importance of utilitarinism and the concept of “quality of life,” virtue ethics (which I understand predates the present virtue signalling by centuries), and feminist ethics (pointing out the neglect of gender issues and diversity). The last four chapters review end-of-life care from the point of view of Islam, Judaism, and Catholic and Protestant Christianity.
The second section focuses on a number of issues related to end-of-life care including dignity (which has different meanings depending on whether you support assisted dying), autonomy (is it really sacrosanct?), the doctrine of double effect, and the difference between killing and letting die. I disagreed with their discussion about futile therapy, which they defined as when the treatment team decided that potentially life-sustaining treatment should not be given; it’s not about what the team feels, it is about what the treatment can or cannot do. And I disagreed with the alternative term offered by the authors (three lawyers from Queensland)—“disputed therapy”—which I thought was unnecessarily combative.
The last section discusses particular issues in end-of-life care, including sedation, the need for both professional and public education to improve the usefulness of advance directives, patients refusing life-sustaining therapy, the notion of moral distress in health care professionals, as well as family and intercultural issues.
If you have an interest in the bioethics of end-of-life care, here is a tsunami of earnest words. There is some good stuff but much of it is opinionated and does not measure up to ENDCARE’s goal of “best practice for end of life [care].”
(Roger Woodruff, October 2020)
Roger Woodruff, MD (Australia)
Dr. Woodruff is a Lifetime Member of the IAHPC Board and Past Chair. His bio may be found here.
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