When Doctors Become Patients: Researching One’s Own Disease
It is not easy for anyone to become ill and be at the mercy of doctors, but what about doctors themselves? How do they react to being on the other side of stethoscope? In When Doctors Become Patients Robert Klitzman, Associate Professor of Clinical Psychiatry at Columbia University, looks at what the experience is like for doctors who become sick, and what it can teach us about our current health care system and more broadly, the experience of being ill. In the excerpt below Klitzman explores how doctors go about researching their own diseases and how this research seems more disheartening once they have become part of the statistics.
‘‘We know very little,’’ Roxanne, the gastroenterologist, said, referring to the medical literature on the causes of cancer. As suggested above, once ill, many of these physicians came to reassess the role of research in individual medical decisions, and became more critical in their evaluations of research as a whole. Roxanne, for example, became more sensitive to the elusiveness of ‘‘the truth,’’ no longer thinking there was just one answer. ‘‘People base things on the literature and on one paper that’s not been duplicated. I’m skeptical. There’s a lot of literature, but also fashions—things used in the past. Now we’re into other treatment approaches. We can’t cure anything.’’ Indeed, these ill physicians appeared previously to have paid little heed to the implications of this pattern.
In general, over the course of their careers, doctors—even if healthy—may increasingly come to be wary of scientific data, and to rely more on their own ever-growing clinical experience. With passing years, a few of the physicians here had become more cautious or even nihilistic about medical knowledge. John, the public health official, became more skeptical about much of what the profession had to offer, appreciating the
As doctors get older, they recognize the shortcomings of their profession more. I don’t have rosy glasses on anymore. Medicine gives you a lot of power, for good or bad.
Given this wariness, doctors then had to decide how much to seek research and statistics related to their disease. One approach for handling the intense anxiety of having a serious disease was ‘‘trying not to think about it.’’ However, most sought rather to gather as much scientific data as possible about their diagnoses. Only a few did not look up articles on their disorder. Jacob reported, ‘‘I don’t avoid it, but I don’t get into it. I’m at a very good psychological state, so why mess it up?’’ He exercised conscious avoidance. His wife also actively pursued information for him.
But most physicians eagerly pursued additional statistics and information. Many immediately checked the literature and researched their illness extensively through Medline searches. Jim, the drug company researcher, for example, had regularly investigated other medical topics as part of his job. He currently did the same for his own disease.
I’ve got files of articles on leukemia and bone marrow transplants now, the way I do about clinical trial designs. I search and keep on top of things. You can’t avoid that.
The physicians drew on their research skills, critically reading and noting limitations of any one study, the complex variables involved. Jim continued:
Being a researcher helped me as a patient—knowing that treatments and experiments don’t always work. A simple thing—a tiny hidden variable—can confound a very complex molecular biology experiment.
Particular skills and experiences as a physician could prove especially valuable.
At the extreme, some felt that, in fact, ‘‘the literature lies.’’ Jacob thought so, since, he felt, only confirmatory findings got published. Consequently, he challenged the reliability of the literature as a basis for making decisions. Yet his attitude may also reflect rationalization—part of his decision to avoid reading the literature concerning his diagnosis. Many felt disappointed by the limited generalizability of much of medical research. For example, in estimating prognoses, medical literature spoke of group means, but not individual patients. Juan, a clinician, felt frustrated that prognoses were based on medians not specific to him.
They’ve got all these statistical estimates of survival, but they’re just estimates. I’ve said to patients, ‘‘I can tell you what percent of people are alive so many months or years after their first pneumonia. But I cannot give you the information for you.’’
He saw researchers as ‘‘they’’—separate and distant.
Criticism arose, too, of how, increasingly with the growth of medical research, trainees learned from computerized literature searches rather than from patients. Physicians also often consulted medical literature only superficially, performing literature searches, but reading merely the abstracts, not the articles themselves. Sally, the internist with cancer who brought her laptop to the ICU, said about her own traditional medical training several decades earlier:
The patient became your thesis, one a week. You learned an awful lot . . . . It was patient-based. Now, a patient comes in and the first thing young docs do is a Medline search, and spit out abstracts, and don’t read the articles themselves. The docs don’t even get the article-they just look at the abstract!