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How to approach the topic that both patients and doctors dread
By Jessica Berthold
Despite the fact that physicians deal with death nearly every day, many are uncomfortable discussing it with patients. That's especially the case when it comes to prognosis, noted David Ross Russell, MD, a family physician in Wallingford, Conn. and speaker at the National Palliative Care Summit in Philadelphia in March.
Research shows physicians not only overestimate prognosis, many consciously present a more optimistic prognosis to patients than they privately believe, Dr. Russell said. For example, in a 2001 Annals of Internal Medicine study of 300 cancer patients referred for hospice, 22.7% weren't given a prognosis at all, 37% were given the same prognosis the physician believed, 28.2% were given a prognosis that exceeded the physician's private estimate, and 12.1% were given a prognosis worse than the private estimate, he noted.
Family members and patients sometimes differ in what they want to hear about prognosis. Photo by Thinkstock.
“Interestingly, the people who overestimate most consistently are those who know the patient best. Primary care physicians, attending physicians—these tended to have much more generous measurements,” Dr. Russell said about physicians' private estimates. “Those of us who get invested in our patients want to believe they will live longer.”
Doctors who consciously overestimate prognosis to patients probably believe they are doing them a favor by providing hope, he said. But what palliative care physicians—who are more prone to underestimate prognosis—know is that overestimating prognosis often ends up deflating patients.
“If we tell a patient we expect him to live six months to a year when we really believe it's three months, the patient will feel he has failed once he hits the two-month mark and starts to decline.”
“If we tell a patient we expect him to live six months to a year when we really believe it's three months, the patient will feel he has failed once he hits the two-month mark and starts to decline,” Dr. Russell said. “Palliative care physicians are more aware of that, and feel they are doing the patient a favor by allowing him or her to exceed the diagnosis.”
It's important to know what an individual patient, and his or her family, wants to know about prognosis, he added. In studies, hypothetical patients have said they would want to discuss their prognosis about 80% of the time. Yet family members only wanted to discuss prognosis 55% of the time.
“You need to ask the patient what he or she wants,” he said. “They don't all want the same thing, and their expressed desires may be different from their families.”
Generally, patients want hope, time to plan for the future, and a physician who is optimistic yet honest, he said. The last of these can be a challenge to balance, he acknowledged.
Dr. Russell pointed to a 2006 article in the Journal of Clinical Oncology which found the most effective strategies to discuss prognosis were:
- Establish the patient's desire to discuss the prognosis.
- If the patient is unwilling to discuss prognosis, acknowledge his or her emotional and informational concerns. “This can be fruitful in and of itself,” he said.
- Consider whether the patient's misperceptions of the prognosis are causing inappropriate decision making. If so, propose a discussion with a surrogate.
- If the patient is ambivalent about discussing the prognosis, talk about the ambivalence.
In order to effectively meet a patient's needs in prognosis discussions, a physician needs to know the relevant data on the disease and prognosis; know how certain or uncertain the numbers are and be able to explain this clearly; understand the patient's potential ambivalence; understand cultural differences about death and dying; and avoid trying to absolve oneself of responsibility by “truth dumping” on the patient, Dr. Russell said.
It's also important to give patients time and privacy to process their diagnoses, encourage them to express their feelings, and avoid euphemisms, he said.
“We need to talk about things sensitively but clearly…talking about an illness in terms of ‘how long it will go on for,’ as though it's a television show, is not terribly clear,” Dr. Russell said.
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