The Ethics of Discontinuing Dialysis

Feature
The Ethics of Discontinuing Dialysis
Delicia Honen Yard
July 12, 2010

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/.]

Is it better for the nephrologist to initiate this conversation with the patient/family, or to wait for the patient/family to broach the subject?

The research is crystal-clear that most American patients want to know their prognosis and want clarification about their rights regarding initiating and discontinuing dialysis. In surveys, patients and their families have consistently endorsed the idea that they want their nephrologist to initiate the discussion if they themselves don't bring it up.

You may notice that I have been emphasizing the United States in my responses. In researching the book, I examined the global aspects and found that different countries and different societies have different opinions about end-of-life matters. For example, a study from Turkey indicates that a smaller percentage of that population would want to be told if they had a poor prognosis by their physician and they would prefer that such information be told by a doctor who was smiling!

What do you think was the greatest takeaway message for physicians from the Baystate incident?

Nephrologists may sign the orders, but it is their staff that is most likely to be present at the deathbed. The staff is not necessarily in agreement uniformly, and conflict may manifest itself in truly awful ways. Criminal accusations literally eviscerate the lives of the accused─whether or not they are ultimately found guilty. Communication and education and an opportunity to discuss such life-and-death decisions should involve all members of the treatment team. We tend to downplay the importance of the aides who deliver the food trays or the individuals who push the brooms, but they may be key figures to the patients and families and all of them ideally should understand and share in these decisions.

At the same time, I do not want to exaggerate this notion that withdrawing or withholding life support treatments will result in civil or criminal actions─it rarely does. But it is always important to communicate with patients and their families and to give appropriate, thoughtful, and compassionate care.

Your book is unusual in that it presents an array of health-care “insider issues” to a lay audience. Five years after the death of Terri Schiavo, what do you hope to accomplish by raising awareness about these matters among the public rather than just to people within the health-care arena?

I'm glad you have asked this question, because while professionals will be stimulated by No Good Deed, I wrote it especially for a general audience. Accordingly, while the book contains provocative ideas, it is designed to accurately recount the narrative of its protagonists, and the reader truly comes to care about them and wants to know what happens to them. I felt compelled to speak to the public because I believe we are less likely to have further incidents involving civil or criminal accusations if we all talk more about these matters. There are physicians I interviewed who went to maximum-security prisons for stopping life-support and providing analgesics for suffering patients, before the legal system woke up to what had happened and they were freed. My hope is such things will never happen again if we are all more knowledgeable about what is considered ethical and legal behavior in our society.

If you were to write a sequel to No Good Deed, which end-of-life treatment matters or related health-care policies would you be most inspired to tackle? That is, which end-of-life issues need the most attention right now?

The Schindler family and the groups that they mobilized─what I loosely call the Sanctity of Life Coalition─are most concerned about feeding tubes and about physician-assisted dying. Those are pretty interesting topics. However, I received a Rockefeller Bellagio Residency and a Guggenheim Fellowship to complete No Good Deed, and both awards made me more appreciative of the global differences in end-of-life care practices. My fantasy project would be to convene an international workgroup along with Woody Moss and my long-time nephrologist collaborator, Michael Germain, to look at the new renal guidelines on initiation and discontinuation of dialysis. I would like to examine this from the perspective of nephrologists, ethicists, and policymakers from around the world and to seek areas of conflict and consensus.

If you had to choose the one party or entity that should have the ultimate decision-making power in end-of-life issues, whom or what would that be: The patient? The family? The provider? The law?

Hopefully no one will ever have the ultimate decision-making power. These are issues that are too complex to mandate or legislate. These are issues that require flexibility. If we ever feel comfortable arriving at them then we are all in trouble.

*Editor's note: Terri Schiavo, 41, died of dehydration in a hospice in Pinellas Park, Florida, on March 31, 2005, 13 days after the controversial removal of her percutaneous endoscopic gastrostomy tube, which she required after suffering cardiac arrest 15 years earlier. (After being on a ventilator for a few weeks following her collapse, Schiavo breathed on her own for the rest of her life.) Her husband, who was her court-appointed guardian, favored withdrawal of life support; her parents objected. The situation showcased a variety of conflicting viewpoints held by family members, medical professionals, legislators, the general public, and even the Vatican regarding patient and surrogate rights, advance directives, and medical ethics.

For more information or to contact Dr. Cohen, visit www.NoGoodDeedBook.com.

From the July 2010 Issue of Renal And Urology News

http://www.renalandurologynews.com/the-ethics-of-discontinuing-dialysis/article/174433/