Sharing Bad News

Medicine and Health Rhode Island, Jul 2006 by Friedman, Joseph H

I am usually uneasy telling medical students how to behave with patients. I like to think that they take away what they think is best from each interaction they see. So, this will not be a column on how to tell patients that there is something wrong with them.

When I visited Zambia last year, I met a young doctor whose extra-curricular volunteer work was helping AIDS patients make out their wills. In Zambia, where 10% of the population and perhaps 20% of adults in reproductive years have HIV, there are many people to be counseled. In that terribly poor country I wondered what was in these wills. Of course they centered mainly on arranging placement and education for their children. I marveled at the selflessness of this doctor, especially in a country where 50% of the children have lost one or both parents to AIDS. I told this Zambian physician that his work was very inspiring but hard, and that I didn't know if I could do it. He told me that it was indeed very difficult at the beginning but that he had gotten used to it. "It became easier with time," he said.

I mused on my own counseling experiences. My patients come for diagnosis and treatment, not for counseling, at least not primarily, but, as with the AIDS patients, we have to share news and plan with our patients, in one case for death and in the other for an altered life with progressive disability. I said, "I share bad news with people too, but I think it's gotten more difficult over the years, not less." For over 25 years I've been telling people things they didn't want to hear. I've followed hundreds of people with Parkinson's disease (PD) and other disabling disorders for 10-20 years. I know the possible futures.

There are some saving graces about telling people they have PD. One is that the course varies enormously so that some of my patients, no thanks to me, have negligible disability 15 years into the illness. Therefore I can't tell patients what they'll be like 5 years from now. Studies have shown that the rate of progression early on usually (but not always) remains relatively constant so that there are no sudden declines, no unpredictable emergencies. This gives people time to adjust and plan.

I recently read a chapter written by a psychiatrist suggesting how doctors should deliver bad news. Schedule an hour in a comfortable office. Turn the cell phone and beeper off. Refuse to accept interruptions. Arrange to have supportive family members present, and then, gently, but without beating around the bush, give the bad news, followed by "the plan" for dealing with it. I thought about this and wondered how often a doctor in today's busy environment has the opportunity to do this. The author suggests that this appointment be made "after all the test results are back." This works when there are tests but quite often the specialist already has all the information, or, as in my case, there usually aren't any helpful tests to order.

In my practice a new patient is usually either diagnosed on the spot or is not diagnosed at all. The diagnosis of PD usually takes a brief moment, although very early cases and those with confounding features may require a few visits over several months. There are no tests to diagnose PD so I usually order none. The diagnosis is based purely on the history and the physical examination, a "throwback" to classical medicine. I cannot tell the patient, "Come back next week, and bring your spouse." I wish I could. Last week I saw a 45-year-old nurse who came alone. "I have this little tremor and I want to know what it is. My doctor thinks it's essential tremor." Parkinson's disease wasn't in her mind. Today I'm seeing a doctor my age who has a resting tremor, the usual beginning of PD. He called and is worried that he has PD. It will not be easy to tell him, if indeed he does have that diagnosis.

I don't know if it's my aging, the increasing number of neurodegenerative cases, or the heartbreak that I mete out. I sometimes think that it's an increasing sense of injustice I feel as more and more of my patients are younger than I, have kids younger than mine or bear greater responsibilities with fewer resources. Each diagnosis has its own sadness. "We'll beat this," they sometimes say. But my diseases aren't like cancer. They aren't curable. Yet some do "beat it." The resiliency and depth of spirit are often inspiring, even in the face of true disaster. "We'll beat this," perhaps a prayer.

Yet, having said all this "touchy feely" stuff, I can't spend an hour sharing the news. I spend what I feel is needed to give my "spiel" about PD, how we don't know the cause, how we don't have a diagnostic test, how much research is being done, how variable the progression is- look at Janet Reno, Muhammed Ali, Michael J. Fox, and the Pope; and then I try to comfort and support. Yes, we're in this together. I've been doing this 22 years. But I have to be efficient too. I have a waiting room full of old patients with new problems and new patients, patients who are a little stiff and shuffle once in a while, "when the arthritis acts up."