The failure of the living will is highlighted in an article that will be published this week in the new issue of the bioethics journal the Hastings Center Report by a U-M internal medicine researcher and a professor of law and internal medicine.
What they find is provocative: The documents designed to help people choose the treatments they would like when dying fail to meet five key criteria for success. Worse, the evidence suggests they don't work. They base their conclusions on a comprehensive review of hundreds of studies of living wills, end-of-life decisions and the psychology of making choices.
The authors are taking on a document that has become ingrained in American medical culture, that the law of almost every state specifically recognizes, and that hospitals are required by federal law to tell their patients about. It is a document that many experts recommend to avoid the kind of problems raised by the Terry Schiavo case in Florida, a case in which a patient's husband and parents have fought a long legal battle over whether she should be kept alive.
The U-M team can imagine circumstances where the living wills may be useful for patients who are imminently facing death, who know their medical circumstances and who have strong and specific beliefs about them. But the researchers conclude that living wills offer a false promise of control over end-of-life treatment.
The best patients can do, the researchers argue, is to use a "durable power of attorney" to appoint someone to make decisions for them when they can no longer make their own decisions.
"Our review shows that the evidence about living wills demonstrates that they fail all five tests that would have to be passed for them to work," says co-author Angela Fagerlin, Ph.D., a research scientist with the U-M Medical School and VA Ann Arbor Healthcare System.
"First, most people don't even have living wills. Second, those who do rarely know what care they would truly want in some hypothetical future. Third, it's surprisingly hard for people to state their wishes accurately and understandably. Fourth, the document is often unavailable when decisions need to be made. Fifth, even when it is available, surrogate decision makers usually cannot reliably apply its instructions to the patient's current health condition."
Co-author Carl Schneider, a U-M Law School and Medical School professor comments, "Living wills don't fail for lack of effort, education, intelligence, or good will. They fail because of basic traits of human psychology."
For instance, studies show that people have great trouble predicting their own preferences about even simple, everyday things, like what snacks they will want or what groceries they will buy next week. "If they have trouble predicting what is familiar," asks Schneider, "why should we expect them to succeed when they are predicting what they will want in circumstances they have never experienced and can't foretell?"
The living will, Fagerlin explains, was designed by bioethicists who wanted to give patients a chance to spell out what treatment they would want and what treatment they would reject if they became unconscious or unable to make their own decisions for some other reason. The idea of the living will is to allow people to maintain control even at the end of life.
Often, the living will starts as a blank form for patients to fill out in writing, stating their individual preferences. The instructions might suggest that patients write down whether they'd want to be kept on life-support machines if they had a catastrophic accident or were terminally ill.
For instance, according to the instructions for the form on the U-M Health System Web site, a patient could write, "Do whatever is necessary for my comfort, but nothing further," or, "I authorize all measures be taken to prolong my life." Patients can also write about their wishes regarding specific medical interventions, such as respirators, cardiopulmonary resuscitation (CPR), surgery and blood transfusions. And they could say how they feel about receiving food and water administered through "feeding tubes."
The functional illiteracy of many Americans, and the difficulty even for skilled writers of expressing their wishes well, add to the problem, Fagerlin notes. And, people's preferences often change as their situations or medical technology changes.
For most people, Fagerlin and Schneider say, a durable power of attorney for health care may be adequate. DPA's allow people to name someone whom they would want to make decisions about their care. That person is usually the patient's spouse or child, but it can be any trusted individual.
"DPA's only require a few simple choices, and they don't differ significantly from the existing system of allowing family members to make medical decisions about incompetent patients," says Schneider. "They also allow the decision-maker to use the information about the patient's condition that's available at the time a decision is needed, rather than asking the patient to guess about something far in the future. And they're inexpensive."
If living wills were free, perhaps their failure wouldn't matter. But living wills cost money. Patients must take time to write them, and doctors and lawyers must be paid for their help in writing them. What is more, the federal Patient Self-Determination Act, which requires hospitals to tell patients about living wills and other "advance directives," cost an estimated $101.5 million to start up nationwide and demands untold time and effort from hospital administrators and clinicians each year. In addition, the authors find, here is no convincing evidence that living wills save money by reducing the cost of end-of-life care.