Living well is the best revenge. But dying well can take a lifetime of preparation.
At a talk held by the Yale Interdisciplinary Center for Bioethics and the Jerome Medalie End-of-Life Issues Group on Tuesday evening, University of Chicago medical professor Daniel Sulmasy discussed surrogate decision-making for patients who are no longer capable of authorizing their own health care decisions. Speaking to a group of 30 people composed of senior citizens, sociologists, physicians, nurses, attorneys, medical professors and students, Sulmasy highlighted some of the problems with traditional approaches to end-of-life decisions, and suggested that stand-in decision makers, or surrogates, make choices based on what they think would best for the patient holistically.
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“I think we all take it as a settled matter that patients without a capacity for decision-making have human dignity,” Sulmasy said, “but the problem is whether we think that substituted judgment can still respect that dignity.”
Sulmasy outlined the standard hierarchal view of surrogate-decision making, which occurs in three stages. First, clinicians refer to the written or oral directives that the patient has given while unimpaired, such a living will. Next, they consult substituted judgments or what the patient’s relatives think that the patient would have decided if they were indeed competent. Finally, medical professionals do what is believed to be in the best interests of the patient, as decided by his or her loved ones.
But Sulmasy said that directives are often either too vague — since doctors have to interpret terms like “extraordinary means” for a given patient — or too specific; for example, if the patient requests a procedure that makes no sense medically.
As for substituted judgments, he added, studies have shown that surrogates simply are not good decision-makers; in an experiment where patients and surrogates were placed in separate rooms and then asked what they thought the patient would have wanted, the surrogates picked the wrong decision 33 percent of the time. Surrogates also undergo an incredible amount of stress, Sulmasy said, which can make them feel as if they were signing a death warrant and which often leads to depression, anxiety, or post-traumatic stress disorder.
“I’m suggesting that we do away with this rigid hierarchy of separate standards, and adopt a system that is unique to each patient but universal in its ethical goal,” Sulmasy said. “What we’re after is authenticity and not autonomy — a decision that is true to the person the patient really is.”
Sulmasy said that authenticity includes knowing a patient’s fundamental moral commitments, whom the patient loves, what the patient stands for, and how the patient has acted in the world. Clinicians, he said, should establish an empathetic connection to the patient’s loved ones and make medical decisions on the basis of what they know about the patient as a unique person.
Three health professionals who attended the talk said they appreciated Sulmasy’s holistic approach to end-of-life decisions and noted that his model alleviates some of the problems with the standard view of surrogate-decision making.
“What I think is so helpful about his model is that it opens up an empathetic conversation with the family and talks about individuals as a whole,” Lori Bruce, a research assistant at Harvard, said. “It’s so hard for doctors to tell loved ones the hard fact that people die.”
School of Medicine professor Thomas Patrick Duffy said he thought that Sulmasy was well grounded in the philosophical background of bioethics and that his concept of authenticity frees people from the exaggerated notion of autonomy. Constance Donovan, who worked as a cancer nurse specialist for 30 years at Yale-New Haven Hospital and was a former member of the hospital’s bioethics committee, said that knowing a patient as a person has been something that many nurses have come to know in practice.
“To be respectful of a person is not to always follow what they say they want, when they are no longer capable of being autonomous,” she said. “Refocusing [end-of-life-issues in Sulmasy’s way] makes it more human.”
Sulmasy is the editor-in-chief of the journal Theoretical Medicine and Bioethics.