One of the shortfalls of applied ethics is that it infrequently draws on the first-personal experience of people facing complex ethical decisions to inform ethical theory. Healthcare ethics and bioethics are no exception. For the most part, ethical conclusions are drawn from considering scenarios and case-studies from the third-person perspective. Medical students and ethicists are typically taught to weigh up the ethical merits of a case without a detailed understanding of how or what each person involved is thinking and feeling. The problem with this method is that it can underemphasize ethical complexity in decision-making, particularly when it comes to joint decision making between patients, clinicians and loved ones, and to deciding how we ought to live and treat each other in the face of serious illness.
Malignant Medical Ethicists Confront Cancer redresses this deficit by drawing together the first-personal accounts of a range of medical ethicists from different backgrounds that have experienced cancer as patients and /or as carers. Dan. W Brock, Rebecca Dresser, Norman Frost, Arthur W. Frank, Leon R. Kass, Patricia A. Marshall, and John A Robertson recount their experiences in a refreshingly candid way. This is an accessible and thought provoking collection that sheds light on novel aspects of the experience and ethics of cancer. The combined papers, edited by Rebecca Dresser, are written in an engaging storytelling manner that blends professional ethical analysis with first-personal accounts of the lived experience of cancer. This method of writing is part of what makes it an important book for cancer patients, carers, health professionals and medical ethicists alike.
Another strongpoint of this book is it tackles features of people’s cancer journeys that typically do not receive much attention in either public messages about cancer or in academic discussions about the ethics of treating seriously ill people. More specifically, in recounting their own experiences, the authors highlight the centrality of ethics to people’s daily lives. In bringing the first-personal experience of having or caring for someone with a serious illness to the forefront of ethical discussions about treatment, care, and medical decision making, this book makes an important contribution to the literature.
Although I cannot address each chapter in this book, in what follows I outline some of the main themes. The book is broadly divided into a series of chapters that reflect salient aspects of a cancer experience. The combined chapters tackle diagnosis, cancer treatment (and whether we have a duty to get involved in clinical trials), remission, last resort treatment, cancer stereotypes, caring for people with cancer, cancer advocate groups, mortality, and surviving cancer. The final chapter also highlights the ways in which the authors think the book ought to shift approaches to ethics away from questions concerning rules, policies, and ethical guidelines, towards questions concerning how we ought to live and die.
One common theme is that there is no one-size-fits-all cancer experience. By implication, discussions about the ethics of cancer need to be sufficiently nuanced and complex to reflect the myriad ways in which cancer – like other serious illnesses - affects people’s lives. Clinicians diagnosing and treating people with cancer generally ought to be more sensitive to the needs of different patients and their families, despite the author’s recognition that this may be easier said than done.
Another theme is the experience of profound vulnerability. Seriously ill patients are more acutely aware of their vulnerability to mortality, to imperfect health care professionals, to the effects and limitations of treatment, and to the flawed and at times overwhelming healthcare system. Some of the authors also illuminate the ways in which cancer diminished their tolerance for platitudes and others’ thoughtless behavior. This aspect of the book raised important questions concerning how we ought to be socialized to respond to serious illness and death.
I have three main reservations about this book which concern the breadth of the audience and the book’s practical applicability. First, despite how much I enjoyed it and agree that it ought to influence medical ethics, I am not convinced the authors do enough to demonstrate the sense in which their insights can be used to influence and improve contemporary medical ethics. Be that as it may, they do successfully start a conversation about what a new approach to medical ethics might need to involve.
Second, there was a tension between the authors’ attempts to recount how difficult and devastating their experiences were, and the fact that they were in a unique position of privilege. As the authors concede, they are all educated in medical ethics, have a greater understanding of navigating the healthcare system than most people would, many of them have colleagues who are physicians and can provide advice, and some of them even taught in the facilities where they received treatment. Despite this, an implication of the book is that their experiences can be used more broadly to improve patient expectations and potentially, cancer experiences. I had a pervasive concern that their experiences may not apply to the average patient. Although some authors allude to the possibility that illness is a great leveler and so their privilege did not facilitate their experiences in the health care system in the way they expected, I could not help but think of how difficult and demoralizing it must be for other, less privileged and informed patients and carers. The authors would not refute this. Nevertheless, I thought more could have been done to extrapolate the connections they saw between their own experiences and those of others.
Finally, there remain questions concerning the degree to which the authors’ experiences are representative of people’s experiences of serious illness outside the United States and Canada. Despite these three fairly minor concerns (and a slight sense of humor failure on my part with the cancer puns), overall I thought the juxtaposition of recounting subjective experiences whilst making objective judgments and recommendations was a powerful combination.
© 2012 Jacqui Poltera
Jacqui Poltera currently works in the Department of Health and Human Services and is a Research Associate in the Department of Philosophy at the University of Tasmania. She completed a PhD in Philosophy at Macquarie University in 2009.