Real Life Story
Documenting Your Wishes

Three quarters of Americans believe in having a legal document to spell out how they want to die if they are incapacitated. But less than 20 percent have a living will or medical power of attorney. Many Americans misunderstand what a living will can accomplish and think simply signing it suffices when it comes to dealing with their end-of-life wishes.

Some people have gone to great lengths to let their families know they have a living will. One woman has tattooed her wishes on her abdomen; another woman has put her living will on her refrigerator. Although a living will is important, medical experts complain that the concept has been oversold. While it's a first step to dealing with end-of-life issues, it is only one among many that individuals need to take.

An Ongoing Discussion


Forms are irrelevant without open and frank communication between patients and health care providers, says Dr. Joanne Lynn, who directs the Center to Improve Care of the Dying at George Washington University. She and her co-director Dr. Joan Teno say that physicians shouldn't offer choices only when a patient is dying. A physician-patient relationship must be based on mutual understanding and "shared" decision making throughout the course of treatment. Lynn and Teno liken advance care planning to the behavioral changes necessary to quitting smoking. For most patients, they say, it is not accomplished in one clinical encounter.

Karen Kaplan, executive director of Choice in Dying, believes everyone should complete a living will and appoint an assertive advocate to ensure that wishes are carried out. But she agrees that end-of-life-related discussions should be continual and broad. Adults should talk early and often to their health care proxies, family members, and doctors about their wishes, she says. Those wishes are likely to change. Doctors repeatedly say that patients' end-of-life desires often shift in relation to a disease's advancement, from not wanting to wanting more treatment.

Wishes May Change As Disease Progresses


Dr. Lynn and many of her peers find that seriously ill patients are often willing to grasp at any hope for a prolonged life and that the bar for what they will or will not accept gets lowered as the disease progresses. A study by Dr. Marion Danis, who chairs the ethics committee for the American Society for Critical Care Medicine, found that 58 percent of patients with advanced illnesses, such as heart or lung disease or cancer, favored treatment even if it extended their life for only one week.

"I think probably the majority of people want treatment because it gives them some hope of benefit," says Daniel Rosenblum, a Maryland-based oncologist and author of a book on listening to cancer patients. Dr. Lynn emphasizes that dying is not a black and white event. "What we forget in our myths and our stories is just how ambiguous these situations are. . . If you write a living will and say you don't want anything done when your situation is hopeless, my question to you is, 'How hopeless?'"

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