Tell patients they have permission to die
Study finds docs know little about patient values
In the hearts of many doctors grows a sense of urgency for giving patients a better death. That urgency is no doubt impelled by more and more ethical conflicts about end-of-life care, the assisted suicide debate, numerous studies that have shown patients fear death and die in pain, and a national movement for change. Despite the doctors’ change of heart or at least their willingness to accept part of the responsibility for change there has been little difference in the way they handle end-of-life issues so far.
"We must begin giving patients the impression that death is a choice," says Ira B. Wilson, MD, assistant professor of medicine at New England Medical Center in Boston. "We have to say the word death. We have to give patients permission to die. If we use euphemisms, how can we be surprised that the patient still assumes the best?" he asks.
Wilson says his first instincts about how poorly doctors communicate with patients came as a medical student. After studying the communication patterns of medical students, residents, and attendings along with their knowledge and understanding of patient wishes and values when they near death, he is more than ever convinced that a profound philosophical change is imperative.
"Despite clinical circumstances that should have facilitated or even necessitated discussion of patients’ assessments of quality of life and treatment preferences, physicians in general were able to estimate the patient’s preferences only slightly better than chance," he says, describing the results of a recent study.1
When asked how their patients would feel about willingness to receive chronic lifelong tube feedings, tolerate chronic pain or confusion, be in a coma, be ventilator dependent, and/or live in a nursing home, experienced physicians were no better at understanding these values than students. In fact, attending physicians overestimated patient willingness to accept many situations.
Perhaps even more striking was the finding that even when a physician reported having talked to a patient about a preference for or against CPR, the patient denied such communication took place.
The study asked patients how amenable they would be to living with and accepting adverse outcomes. Patients rated their preferences from very willing, to somewhat unwilling, to "would rather die than put up with the situation."
More than a quarter of the 378 patients studied in this SUPPORT II (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) cohort study said they would rather die than put up with any of these outcomes, and about said they would rather die than be comatose or on life support.
The inherent flaw in communication on these issues lies in the language and listening skills used by both physician and patient, Wilson contends.
AMA to set the standard
The American Medical Association, through its new Institute of Ethics, plans to engage as many physicians as possible in a train-the-trainers program on advanced care planning. An assessment tool used for advance care planning will become as standard as getting a medical history, explains Linda Emanuel, MD, institute director.2
Increasing use of questionnaires to discern patient treatment wishes, while a step in the right direction, will not achieve the desired result, Wilson asserts. "Our whole field of medicine is paddling off in the wrong direction. Checking off boxes is not dialogue," he says.
In addition to the fact that most doctor/patient communication is "vague and euphemistic," he charges, "It is the doctor’s job to match today’s technology to the patient’s goals, not the patient’s job to decide what technology they want."
Making time for these discussions also will require some changes in payment structure, Wilson and Emanuel agree. If a patient comes in for a 30-minute physical, you need the entire time for this kind of dialogue, but it is not reimbursable under current payment structures.
The physician, patient, and family must be willing to talk about impending death, Wilson says. (See related story, p. 91.) Ethics committee members can encourage all parties to make better efforts at talking about values throughout the continuum of care. Clergy can play a pivotal role in the continuing dialogue by helping the family move from accepting the disease to accepting the impending death of their loved one.
"The most moving experiences I have had in medicine are all around a patient’s death," says Wilson. "When everything is done in a collaborative fashion, when we give patients the time and the opportunity to say things to their loved ones they need to say, when doctors get in touch with how to really touch other people, it is something wonderful to be a part of."
References
1. Wilson IB, Green ML, Goldman L, et al. Is experience a good teacher? How interns and attending physicians understand patients’ choices and end-of-life care. Med Decis Making 1997; 17:217-227.
2. Emanuel L. Editorial: Bringing market medicine to professional account. JAMA 1997; 277:1,004-1,005.
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