Feb. 21, 2001 -- Ten years ago, Christina Puchalski's fiance was dying. In the weeks and months prior to his death, her fiance, a physician, had told her that he was too terrified to face it. He had told her that, when the time came, he would swallow some pills.
"On the night he was dying," Puchalski, also a physician, recalls, "I stood by his bed and told him, 'You can get more morphine, and you don't have to suffer through this.' But he looked up at me and said, 'I want to be alert to the very end.'"
Puchalski's story is a powerful illustration of the unpredictable nature of a person's needs and wants as he or she approaches the ultimate unknown. It also illustrates the limitations of legally required advance directives, commonly known as living wills, in communicating to physicians and family members how people should be cared for in their last hours.
Two studies in the Feb. 12 issue of Archives of Internal Medicine demonstrate that living wills -- sometimes completed by patients long before they are dying -- frequently fail to capture the complex life-and-death decisions that accompany end-of-life care, according to author William D. Smucker, MD.
"I think the value of [a living will], in and of itself, is minimal," Smucker tells WebMD. "But I think the value of a discussion between a patient and a physician is maximal. If people believe having [a living will] is going to improve communication at a later date, or [prevent] the need for those discussions, they are mistaken."
Smucker is associate director at the Summa Health System Family Practice Residency Program in Akron, Ohio.
In the first study, 400 outpatients over age 65 and their self-designated surrogate decision makers were randomly assigned to experiments in which the family members tried to predict what the patients would want in life-and-death situations with or without a living will. In none of the scenarios -- in which patients and family members had options for life-sustaining treatments for a variety of medical conditions -- did a living will improve family members' ability to predict what their loved ones would want.
A second report found similar results when 24 physicians tried to predict patients' wishes for end-of-life care with and without a living will. In that study, the ability of primary care physicians to predict the wishes of more than 80 elderly participants was not improved either with a scenario-based living will -- in which patients could choose from treatment options for a range of medical conditions -- or with a value-based living will, according to the results.
Smucker and others say the complexities of modern medical care and the very fluid nature of the process of dying -- in which patients can be skirting death one minute and relatively safe the next -- makes it nearly impossible for a technical document to capture all the possibilities.
"None of this is real until it is real," says Smucker. "When the rubber hits the road, life and death is more complicated than can ever be captured in a single document or a single conversation. Our zeal to do this with [living wills] is probably misplaced."
So should patients even bother to have a living will? Undoubtedly, yes, Smucker says. But what they really need is a relationship with a physician and the ability to discuss the issues of end-of-life care when the prospect of death is real.
"What I am a proponent of is discussions with people and family members at the time they have a progressive illness that they know will eventually result in having to make a decision to use or refuse life-sustaining treatment," Smucker says.
Puchalski, who reviewed the reports for WebMD, says the findings come as no surprise.
"[Living wills] would only work if life were neatly packaged and totally predictable," she tells WebMD. "But in the vast majority of cases, people are dealing with death from cancer, congestive heart failure, diabetes, and other complex diseases. These all have very unpredictable courses." She is an assistant professor of medicine at George Washington (GW) University School of Medicine and director of the GW Institute for Spirituality and Health.
She says she has had patients who tell her they don't want to be put on a respirator if they are clearly dying. "But what does 'clearly dying' mean?" she asks. "It may not be that obvious and is sometimes very nebulous."
Although Puchalski agrees that living wills have a place, she says they need to be much broader. She explains that "Five Wishes" is a living will form developed by Aging With Dignity that helps patients express how they want to be treated if they are seriously ill and unable to speak for themselves. According to Aging With Dignity, the document is unique among living wills in that it "looks to all of a person's needs: medical, personal, emotional, and spiritual."
The document is legally recognized in all but 15 states, according to the organization.
"Patients and doctors need to know that their lives and deaths are not 100% within their control," Puchalski says. "Both need to honor the mystery of death. There is a tremendous amount of mystery in living and dying, which flies in the face of our need to have everything neatly packaged in a form."