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in Connecticut. The challenge was particularly great when the patients suffered from heart or lung disease. While families usually accept that diseases like metastatic cancer are ultimately terminal, they find it harder to imagine that modern technologies like ventilators and bypass machines cannot save loved ones who have heart or lung disease. As a culture, our technology bias is powerful here: The heart is, in essence, a pump; the lungs are bellows. There must be an engineering solution to problems of these organs.

Fried and O’Leary’s study recounted an experience that echoed that of the Adler family. In this case, the physician also told the patient’s daughter that her mother must be intubated or she would die. By going on the ventilator, the doctor said, her mother would get her strength back and her lungs would clear. “My mother wouldn’t have it,” the daughter reported. “She said, ‘I’m not going through that.’ I said, ‘Do you understand that you are going to die?’ And she said, ‘I’m ready to die.’” Like Ruth, the woman in Connecticut held to the set limits in her advance directive, even though they clashed with what the doctor thought best and what her family wanted.

Beyond advance directives, what can be done to improve decision making during critical illness?

Certain states like Oregon, New York, and North Carolina have tried to refine the advance directive by having the patient specify what treatments he or she wants at the time of hospital admission: full CPR, or short of CPR, antibiotics, intravenous fluids, comfort measures like oxygen and pain medications. Physicians then write orders in the patient’s chart about each intervention. While this may be helpful, experts in palliative care emphasize that there are no shortcuts around serious, time-consuming, and emotionally charged conversations between the patient, loved ones, and doctors, like those the Quinn and Adler families had. Such conversations do not follow one script and sometimes take sharp detours. But repeated communication can bring clarity to the complex choices that all of us may one day face. An advance directive, or living will, is the beginning, not the end, of expressing our wishes.

Nine

When the Patient Can’t Decide

The principle of autonomy dictates that the patient has the right to choose or to refuse any offered treatments. But when you are ill and in the hospital, you may be least able to make these choices. Studies indicate that as many as 40 percent of adult hospitalized patients are receiving sedating drugs, confused, or even comatose and therefore incapable of making their own decisions about therapy. Since incapacitated patients can’t actively communicate their wishes, family members or other surrogates must make decisions for them. Some surrogates may want to assert autonomy on the patient’s behalf; other surrogates may want to relinquish control to the physician. During the course of a complex illness, changing circumstances may shift the role of decision maker back and forth between surrogate and doctor.

Omar Akil had never really thought about being sick. A forty-four-year-old biochemist at a medical school in the southern United States, he’d always been healthy. Right now, he was focused on completing a major research proposal. Omar finished his coffee and walked to a conference room near his laboratory to meet with his colleague, a cardiologist, to review the current version of the proposal. The deadline was January 15, and Omar realized that he had only four months to prepare his submission.

He settled into a chair, adjusted his wire-rimmed glasses, and spread out the pages of the proposal on the table in front of his colleague. “I don’t know if it’s just the light here,” the cardiologist said, “but you look like you might be jaundiced.”

Omar was surprised. He’d never had any problems with his liver.

“It’s probably nothing,” the doctor continued, “but you should get it checked out.”

Omar didn’t have a primary care doctor. He’d been meaning to select one after his physician had retired, but he hadn