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.