As the saying goes, no good deed goes unpunished. Yet one practitioner’s perceived good deed for a dying patient could be another’s definition of homicide.
In No Good Deed: A Story of Medicine, Murder, Accusations, and the Debate over How We Die (HarperCollins), Lewis M. Cohen, MD, examines the true story of two renal nurses at Baystate Medical Center (Springfield, Mass.) who were investigated for murder in 2001 after a nursing assistant accused them of causing the death of a patient.
The patient was a woman in her 60s with multiple comorbidities; she and her family chose to stop her dialysis treatment and continue with palliative care only. The nursing assistant approached the district attorney’s office with her allegations, and a full murder investigation was launched.
Dr. Cohen received a Rockefeller Bellagio Residency and a Guggenheim Fellowship to complete No Good Deed. A professor of psychiatry at Tufts University School of Medicine, Dr. Cohen is also director of the Renal Palliative Care Initiative, a collaboration between 10 dialysis units and the facility featured in No Good Deed—Baystate Medical Center.
Were you on staff at Baystate at the time of this incident? When did you hear about the event and what was your initial take on it?
Dr. Cohen: I have been a staff physician at the medical center for nearly 25 years, and during that time have conducted a series of research studies examining dialysis discontinuation. I heard about the incident a full two years after it happened. The medical center carefully protected the confidentiality of the patient, family members, and staff.
I learned the circumstances only because I made a serendipitous decision to begin exploring the perspective of renal nurses concerning dialysis cessation. Knowing that they are the ones who spend the most time with patients and families, it seemed overdue that I turn my attention away from the nephrologists (and even the patients), and instead focus on hearing from our nursing staff.
During a series of interviews, they recounted a number of remarkable stories of inspiring deaths that followed stopping dialysis. Those were not surprising. What was surprising was this particular case, which had resulted in criminal accusations.
To put it mildly, I was shocked and horrified. I became determined to understand what had happened, and in the process discovered that there were a number of similar—and sometimes much more catastrophic—cases around the country where nurses or physicians stopped life-support treatments, provided analgesics to relieve suffering, and then found themselves accused and sometimes even convicted of murder.
You examined both sides of this particular case as well as the end-of-life debate and related health-care policies in detail; did your view change at all in terms of what you believed in when you started this process?
The Baystate case and the hoopla surrounding the Terri Schiavo* case opened my eyes to the millions of Americans who do not share my own palliative medicine philosophy. In the book, I had the opportunity to describe my interview with Terri Schiavo’s brother, Bobby Schindler, Jr., characterizing his vitalist beliefs─that we should not make decisions based on quality of life and that medical care should be solely directed at maximally prolonging life.
I do not agree with this perspective, but it was important for me to more fully understand it. I was able to interview ethicists who hold similar viewpoints, disability rights activists, right-to-life conservatives, and deeply religious individuals who maintain similar interpretations. I originally thought my book would depict two heroic nurses and a villainous accuser, and came instead to appreciate that is an oversimplification of a complex and crucial societal conflict.
Although you’re a psychiatrist and not a nephrologist, you are particularly focused on palliative care for dialysis patients. Why did this aspect of end-of-life care capture your interest?
As a psychiatric researcher-clinician, I was initially curious about any similarities between classic suicide and the decisions by terminally ill people to stop life-prolonging treatments. Both behaviors lead to death, but they also seemed to me to be radically different from each other.
The dialysis population is a wonderful group to investigate because many of the patients are articulate individuals, their families have distinct opinions, and staff knows the patients over years and has an essential role to play. In addition, death takes place an average of eight days following the decision, and there is sufficient time so that patients can theoretically resume treatment. Nowadays in New England, dialysis discontinuation is quite frequent and occurs in greater than one-in-three deaths in this population.
How or when can a nephrologist advise a patient/family to consider palliative care rather than aggressive treatment without violating legal or ethical boundaries?
In the United States, it is completely legal to stop dialysis. The overwhelming majority of American bioethicists also maintain it is entirely ethical. The field of nephrology is fortunate in having had a carefully thought-out set of guidelines for arriving at these decisions.
[Editor’s note: See Galla JH. Clinical practice guideline on shared decision-making in the appropriate initiation of withdrawal from dialysis J Am Soc Nephrol. 2000;11:1340-1342.] The guidelines are undergoing a revision and will be published again this year. This ambitious and important effort is led by a West Virginia nephrologist, Woody Moss, MD, and it is to his credit that the [Renal Physicians Association], and other organizations have participated and authorized the guidelines. [For more information on the updating of the guidelines, see page 30 of the April issue or visit http://www.renalandurologynews.com/nephrologists-expand-the-use-of-palliative-care-in-esrd/article/167404/.]