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By Root 923 0

in an industrialized fashion. Visits with patients are shaved down to a few minutes; conversations are structured to meet standardized protocols and quality measures. But the difficult and often changing decisions patients make about what and how much more to do in the midst of a life-threatening condition are not “products” that “efficiently” roll off an assembly line. Guiding a patient and her family as she nears the end of her life is neither an easy nor an efficient process. It takes time and effort because it is not direct, not linear; it involves much back-and-forth discussion, often without coming to a decision or, after deciding, reversing that choice and then later changing choices again. This new medical system might be more efficient in delivering certain types of care, but it often ends up not caring for the patient.

Time isn’t the only barrier to helping a very sick patient understand her condition and clarify her wishes about treatments. Deidre considered how many issues made it difficult to have a conversation with Mary about palliative care. “I think we never had a real talk about dying because she wanted to protect my father. She was the matriarch, she was the strong one, and somehow I think she was afraid that if it was out in the open, he just couldn’t handle it. But I also think it was her will to live. And her faith. She just wasn’t ready to die.”

Mary Quinn changed her wishes about intensive measures during the course of her illness, like half the patients in the Yale study by Dr. Terri Fried. But the other half held fast. Like those patients, Ruth Adler did not change her mind.

Ruth Adler had also planned her funeral down to the last detail. She had selected the rabbi who would preside, the psalms that would be read, the music that would be sung. That was also ten years ago. Now seventy-five years old, a petite woman with a crown of thick white hair in a youthful pageboy cut, she lived just outside Washington, D.C. A homemaker who was active in her synagogue and community, Ruth was long familiar with medical illness. As a child, she’d had kidney ailments that required repeated surgery. Her youth was marked by many months in the hospital and winters with cousins in Florida in the belief that the warm climate would help her heal. As an adult, Ruth ate a healthy and balanced diet, was meticulous in how she took medications, and believed in doing the maximum to avoid problems. Her daughter, Naomi, told us, “My mom was all about maintenance and prevention. She always wanted to do everything right.”

At the age of thirty, Ruth was diagnosed with breast cancer. She underwent what was then the most aggressive therapy, a radical mastectomy, followed by intense radiation treatments that burned her chest wall. In addition, both ovaries and uterus were removed. Her breast cancer never returned, but she was left with burned, scarred skin on her chest wall.

Ten years ago, at the age of sixty-five, Ruth fainted while shopping in a local supermarket. She was taken to the emergency room and found to have aortic stenosis, a narrowing of the aortic valve in the heart, which limits the amount of blood that can be pumped out to the brain and other organs. Ruth was evaluated by a cardiologist and a cardiac surgeon. Both agreed that her condition required open heart surgery to replace the diseased aortic valve with an artificial valve. But the operation was even more risky than usual because the incision would have to be made through the irradiated skin and might not heal.

Naomi told us, “She knew it was serious surgery, and she prepared the family by saying that she didn’t want to live debilitated in any way.” Before the operation, Ruth designated her husband, Naomi’s stepfather, as her health proxy. She also drew up an advance directive, specifying that there were to be no heroic measures and no effort at resuscitation.

After Ruth’s surgery, her doctors strongly advised her to go to a rehabilitation facility for a few months, but she adamantly refused. “She said she won’t ever go to rehab. That was totally against