Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [53]
Depending on another person as her primary guide in decision making was alien to Julie. She was used to being the boss, overseeing all the choices made in her gallery—which artists to represent, when to schedule an opening, and which guests to invite. She listened to advice, would at times question her own thinking, but ultimately held sway over every decision. She was used to being in charge, functioning with a high level of autonomy.
Autonomy is a primary right of all patients, and it is widely assumed that patients always want a major role in directing their medical treatment and care. But studies indicate that there is considerable diversity in how much control patients want to have. One report of more than one thousand Canadian women with breast cancer showed that 22 percent wanted to select their own cancer treatment, 44 percent wanted to select treatment together with their doctor, and 34 percent wanted to delegate completely the choice to their physician. Interestingly, over the course of their care, less than half believed that they had achieved their desired level of control in decision making.
At the pivot point of considering radiation therapy, Julie felt she had reached a sufficient level of trust and confidence in her oncologist that she could cede control to him. This didn’t mean that he shielded her from the complexities of her choices or presented his opinion as infallible. He didn’t pretend, as she put it, “to be an oracle.” Julie still wanted to know where she was going and how she would get there, but her doctor was the pilot, because he not only had the technical knowledge needed to navigate, but, she believed, had gained a sense of her as an individual and would factor in her values and goals at each point along the way. Here, Julie welcomed her doctor offering his preferences, because he did so in a transparent and considered way. This is in contrast with what we saw earlier in the case of Patrick Baptiste, where his physician projected his own treatment preference onto Patrick without first assessing how much input and control Patrick wanted.
Julie told us, “My oncologist really believed that it would be better for me to do the radiation, and this is where, I think, you have to believe your doctor is trying to do the absolute best for you. That’s the point of seeking the right doctor.
“It was lucky for me,” Julie told us, “that I was able to put my faith in my doctor.”
For Julie, ceding some autonomy to him made such a miserable period in her life more bearable. “I know somebody who had cancer at the same time that I did. She had a completely different experience. She didn’t trust her doctor, and that gave her a lot of anxiety and uncertainty—sleepless nights online, a lot of e-mailing around. Her outcome was good, which is wonderful, but . . .” Julie paused. “But, it was like a constant struggle. The burden was so much greater.”
After she agreed to undergo radiation therapy, Julie felt that everything was settled, that her treatment plan was clearly defined. But then she received test results showing that she had a mutation in a BRCA gene. Her oncologist had previously explained that the BRCA1 and BRCA2 genes are normally involved in limiting damage to DNA, so when either is mutated, damaged DNA can more readily change a cell from normal to cancerous. Mutated BRCA genes are particularly common among women of Eastern European Jewish heritage, like Julie, but they are also found in other ethnic and racial groups. In most cases, the mutation is inherited from a parent—but not always. Her oncologist had also told her that mutated BRCA genes markedly increase the likelihood of developing breast cancer in any remaining breast tissue. Furthermore,