Q&A With End-of-Life Care Book Author
End-of-life care in any area of medicine is a thorny subject—especially in dialysis—with images of Dr. Jack Kevorkian and Terry Schiavo coming to mind for many people. However, this issue is much more complicated than the sensationalistic headlines. To help balance the arguments, Lewis M. Cohen, MD, FAPM, brought his professional insight to the topic last year in his book “No Good Deed: A Story of Medicine, Murder Accusations, and the Debate over How We Die.”
Cohen is a Fellow of the Academy of Psychosomatic Medicine and Professor of Psychiatry at Tufts University School of Medicine. He is also a consultation psychiatrist at Baystate, where he heads the Renal Palliative Care Initiative.
The book, which HarperCollins reissued in paperback form last month, delves into the issues of palliative and end-of-life care by following the case of two renal nurses who were accused by a nursing assistant of murdering a patient in 2001 at a Massachusetts hospital. In fact, these nurses were providing conventional end-of-life care for a patient who had ended hemodialysis treatments with family support and under physician care.
Cohen also writes about other patients who ended their dialysis treatments at the same hospital and provides a deeper look into patient care after the decision to end a life-saving treatment.
On the heels of the paperback release of the book, I asked Cohen a few questions to gain a little more insight into this topic. His answers are below.
How did medical professionals react to your book within the last year? Did you receive any additional insight to end-of-life-care issues?
Cohen: Uniformly positive and enthusiastic! I had nurses writing me that they were delighted to find the situation out in the open, and also to have nurses as protagonists. Nurse ethicists wrote that they were looking forward to using “No Good” Deed as a textbook in their classes. JAMA published a dandy editorial (attached), as have a few other medical journals. I have been invited to speak at medical meetings from New York to California.
What makes palliative care unique for renal care compared to other medical specialties?
Cohen: The elderly population that is only getting older, and the incredible demands (and expense) required of dialysis. I have always found dialysis discontinuation to be the most instructive type of treatment termination, because patients are able to speak (unlike with ventilators) on their own behalf, and they have an opportunity after ending that treatment to meaningfully part with their loved-ones- or in very rare occasions, to change their minds. Nephrologists are unique in the frequent (3 times/week for some) contact they potentially have with their patients that extends for years or decades, and dialysis taps the resources of a team of caregivers that not only extend themselves to patients but to loved-ones.
Do you feel the battle lines over palliative care mirror those of the abortion debate? Are there ways to bridge that divide?
Cohen: The American Council of Bishops is about to issue over the next week a declaration opposing physician-assisted suicide. While I suspect they will support palliative care generally, the Church is pulling back from accepting the removal of feeding tubes. The bottom line is that many of the same people who have long been engaged in the abortion issue are seeing similarities to end-of-life issues, and there will be ongoing tensions. For now, hospice and palliative medicine are approved and recognized by organized medicine and American jurisprudence and most bioethicists, as being a legitimate option to offer people.
Are there ways the chilling effect of possible criminal charges influences decision making in end-of-life care?
Cohen: It is mainly bad luck that has placed some of our most caring medical professionals as targets for criminal prosecution. When this occurs, it is worse than malpractice cases. I cannot stress enough that the criminal charges rarely occur, and I would not at this point suggest that anyone change their compassionate care of patients—other than to expend more time and effort by 1) documenting the rationale for decisions, and 2) communicating with not only family members, but also ancillary staff, e.g. nursing aides, techs, etc.
How can medical professionals, especially those working in dialysis clinics, protect themselves against the possibility of criminal charges over end-of-life care?
Cohen: See above. I would not be constantly looking over my shoulder. I would try to learn more about palliative care, because it is extraordinarily fulfilling to incorporate it into practice. Every community has hospice and palliative care resources that are eager to participate in the care of renal patients—and even if they cannot be covered by insurance, they are willing to provide educational outreach to dialysis staff and consultations.