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Angela largely kept her diagnosis a secret, following the principle of “need to know.” Although she had physician friends, she kept her situation private even from them. She worried that some people would drain her energy by engaging her in discussions about her disease, asking probing questions about her feelings and her fears. Uninvited suggestions from well-meaning friends, about someone they knew with Hodgkin’s lymphoma or someone with a different kind of lymphoma who they thought had seen a different doctor or received another treatment, would do nothing but raise decisional conflict for Angela. She told us she had no emotional reserve for such people who, with the best intentions, might end up getting more from her than they would give her. “I estimated 98 percent of the people would turn out to be better than you ever thought they were, and 2 percent just want to live off your bad news.”

Angela wasn’t the only person we met who kept her diagnosis mostly to herself. And there can be many reasons why patients might not want to share their medical information. A thirty-two-year-old university professor who had chronic leukemia wanted to avoid having her disease become the focus of every conversation she had, but she also worried that she wouldn’t get tenure, that her condition might affect her status at work. “My promotion could be on the line,” she said, so “only my family and my closest friend knew.” It isn’t just cancer that people may be reluctant to share. A retired construction worker developed cardiomyopathy, a weakness of the heart muscle. The cause of his heart failure was not identified, and its future course was uncertain. He told his wife but didn’t want his grown children to know. “Their worries would only make me feel worse,” he told us.

For Angela, keeping her diagnosis private helped her to preserve her sense of normalcy. She didn’t want her disease to subsume her identity. She could talk with friends about her son’s baseball games and her daughter’s role in the school play without discussing her health. She needed to feel that she was a person, not only a patient, that cancer hadn’t changed her entire life. These protective barriers helped her cope. “You have to take everything as it comes,” Angela said. “You can’t let it consume you.”

She also found deep comfort in her oncologist’s attention to the personal aspects of her life. “She was always thinking of something that would be better for me,” she said. “Often, she went ahead and made phone calls and changed the schedule so I didn’t have to miss my son’s baseball games. She would just take that extra step. I felt like she cared for me as a person, not just a case that she was managing among many.”

The oncologist also told Angela that she often consulted with colleagues to “get a second opinion to check herself.” Angela liked that. “I’m more scared of the person who thinks they know everything.”

Like Julie Brody, Angela didn’t try to become an expert about her disease. “You have to trust people. Teachers teach, and that’s how they spend their careers. People like doctors and nurses spend their lives figuring out how to take care of patients.”

Carl Schneider points out in his book The Practice of Autonomy how in some cases our culture seems to go to extremes, stigmatizing people who don’t want to assert control at every step of their illness. We agree with Schneider. In our view, true autonomy means that the patient can decide the limits of his or her autonomy. Further, part of autonomy is defining one’s personal way of coping.

We spoke with Angela four months after her treatment ended. There was no sign of Hodgkin’s lymphoma, and it’s very likely she is cured. Although she hadn’t yet gained back all of her weight and strength, she told us that she has returned to her yoga classes. “My oncologist told me that they like to treat lymphoma because it makes them look so good; they bring people back to life. I am getting back to being the person I was.”

Seven

Decision Analysis Meets Reality

Paul Peterson looked