If you're like 25 to 30 percent of Americans, you've taken the time to prepare a living will, putting to paper in a legally biding way your end-of-life wishes and, presumably, relieving your next of kin of having to make life-or-death medical decisions for you. But as a recent Wall Street Journal article pointed out, many living wills may not be clear or thorough enough to guide loved ones in every possible situation, leaving them struggling to decide what to do with your life in the balance.
In the Journal article ("A New Look at Living Wills"), writer Laura Johannes described the dilemma she faced when her father was in a coma. His living will stipulated that he not be kept alive if he was terminally ill, or facing an irreversible vegetative state. But his situation was not so black-and-white: A neurologist said her father could wake from the coma, but there was a chance — and the doctor could not tell her the odds — that he'd have severe brain damage. Johannes, left to decide whether to authorize treatment without clear guidance, began questioning whether living wills are as useful as many of us think.
In the article, Daniel Callahan, co-founder of New York's Hastings Center, a nonprofit bioethics research institute that was an early champion of living wills, tells Johannes: "We had a naive view that if you had a document, that would solve the problem. In practice, all sorts of problems arise that aren't spelled out." Callahan told Johannes that he doesn't have a living will, but has granted decision-making power to his wife with the simple instruction, "When in doubt, don't treat."
Callahan's surprising decision may represent a trend, Johannes wrote: "Some ethicists … are de-emphasizing living wills altogether and focusing on appointing a trusted family member or friend as your health-care agent." Under the legal doctrine of "substituted judgment," Johannes reported, such agents "must try to make the decision you would if you could. … Anything — a phone conversation, a list of instructions or a formal living will — can be used as evidence of your wishes."
The turn away from simple living wills represents an acknowledgment that rapidly improving medical technology makes it difficult for doctors to predict whether a patient will survive or for how long; what treatments might be involved in sustaining life; and what quality of life could be expected should they survive. Lee H. Schwamm, vice chairman of the neurology department at Massachusetts General Hospital in Boston, told Johannes that he is wrong "15 percent to 20 percent of the time" when patients ask him to predict, say, whether a stroke patient will ever walk again. "I've never seen a living will — and I've seen a lot — that speaks to this question of diagnostic uncertainty," Schwamm told Johannes.
In a recent column on end-of-life directives, Jane Brody of the New York Times spoke to Bernard Hammes, who directs the health-care advocacy training program at Gundersen Lutheran Health System in La Crosse, Wis. “People need to sit down and decide what kind of care makes sense to them and what doesn’t make sense, and who would be the best person to represent them if they became very ill and couldn’t make medical decisions for themselves,” Hammes said. “If, for example, you had a sudden and permanent brain injury, how bad would that injury have to be for you to say that you would not want to be kept alive? What strongly held beliefs and values would influence your choice of medical treatment?”
To address these uncertainties, several groups have developed more flexible and thorough documents that ask patients to answer questions about a wider range of possible outcomes, to help them state their wishes more clearly and take more potential life-or-death decisions out of their appointee's or next of kin's hands. Research supports the shift: Johannes cited a University of Michigan study of 400 patients, some with living wills and some without, which found that family members could correctly predict their loved one's care wishes only about 70 percent of the time.
The Five Wishes document, available from the website Aging with Dignity, is one such alternative living will, designed to help people communicate how they want to be treated if they become too ill to speak for themselves. Sherri Snelling, founder and chief executive of the Caregiving Club, recently wrote about it here on Next Avenue. The document outlines options and asks questions that help patients express a wide range of preferences covering their medical, personal, emotional and spiritual needs, based on these five core questions:
2. What kind of medical treatment do you want and which treatments would you decline?
3. How comfortable do you want to be?
4. How do you want people to treat you?
5. What do you want your loved ones to know?
Whether you use the Five Wishes document, a traditional living will or another alternative, Snelling wrote: "The harsh reality is that if you do not have this conversation, family members can be confused and conflicted and end up having emotional exchanges you would never wish upon them. Dying is not a choice, but how the end will come is. We owe it to our families to share our wishes."
As for Johannes, before she was able to make a judgment about treatment for her comatose father, she wrote, "He woke up, sharp as a tack, able to make his own decisions."