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Living wills don’t work and waste your time when you promote them to patients, according to researchers at the University of Michigan (UM) in Ann Arbor. Even aside from what’s best for patients, living wills may lull risk managers into a false sense they have avoided potential difficulties by encouraging patients to address them up front, they say.
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.
Carl E. Schneider, JD, the Chauncey Stillman Professor of Law at the UM Law School and professor of internal medicine at UM, says living wills don’t fail for lack of effort, education, intelligence, or good will. They fail because of basic traits of human psychology, he says. 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," Schneider asks, "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?"
Conventional wisdom is wrong?
The need for living wills has become conventional wisdom among many health care providers without any proof that they work, Schneider says. The news that living wills don’t work may hit hardest at the institutions where risk managers have encouraged more than a perfunctory mention of their availability, the minimum required by the federal Patient Self-Determination Act. Many health care professionals may be surprised to learn that the latest research indicates that trying to get patients to sign living wills is "at the very least, a waste of your time and energy and money."
Schneider and fellow researcher Angela Fagerlin, PhD, a research scientist with the UM Medical School and Veterans’ Administration Ann Arbor Healthcare System, recently released a study in which they analyzed how living wills actually were used and how much they reduced the end-of-life debates they were intended to address.1
Their basic conclusion was that a living will is "a nice idea, but it doesn’t work," Schneider says.
The living will, Fagerlin notes, 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, but they have proven to be impractical.
Fagerlin says she thinks most health care professionals would be surprised by just how useless living wills tend to be. "It might not be the best use of a health care provider’s limited time to discuss living wills. People want living wills to work, and it seems like they should in an ideal world. So there’s some disappointment that they don’t."
Fagerlin says there is no evidence that living wills work, yet health care providers spend thousands of dollars every year promoting them to patients, partly because the law requires them to and partly because there is a strong belief that living wills are "the right thing to do."
"Our research might be welcomed by those who already suspected that there were limits to living wills and might be relieved that they don’t have to engage in this futile exercise," she says. "It’s important to note that this isn’t just our opinion, but that it’s based on solid research with how living wills are actually used."
A kind of malpractice
Schneider urges others to reconsider how living wills are promoted in their institutions because he says they are, at best, a waste of time. But he goes a step further and suggests that you are doing your patients a disservice by encouraging them to sign something that ultimately will not be useful.
"I do think it is a kind of malpractice to be pretending to patients that these documents are really going to have an effect," he says. "People are making these really serious decisions based on little information, seeing it as just one more form to fill out. And you’re telling them that they have addressed a very serious matter when, in fact, they have not."
It is unlikely that patients could find a successful way to sue the provider when a living will does not fulfill its promise, but Schneider says health care professionals are fooling themselves if they think that living wills will help them avoid thorny situations like the Terri Schiavo case in Florida, in which a patient’s husband and parents have fought a long legal battle over whether she should be kept alive.
Courts are reluctant to uphold living wills when push to comes to shove, and largely for good reason, Schneider says. "The courts recognize that the document was signed before the patient was in the current state and before they could even understand what specific issues are being contested," he says. "Courts are likely to say that the living will is not legally binding."
Fagerlin notes that a living will would not have made any difference at all in the Schiavo case, yet the media were suggesting that it was a good example of why everyone should have a living will. In the Schiavo case, the dispute centers on exactly what the patient’s condition is, a question that is not answered in a living will. "But if she had had a durable power of attorney saying she wanted a particular person to make that decision for her, then there would be no conflict," she says. "That is a good example of the usefulness of a durable power of attorney vs. a living will."
Challenging common practice
Schneider says he can imagine circumstances where the living wills may be useful for patients who are facing imminent death, know their medical circumstances, and have strong, specific beliefs about them. But far more often, he says, 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.
Schneider says the way many health care providers encourage patients to complete living wills is part of the problem. 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 UM 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 also can write about their wishes regarding specific medical interventions, such as respirators, cardiopulmonary resuscitation, surgery, and blood transfusions. And they could say how they feel about receiving food and water administered through feeding tubes.
But what do those options really mean? When a living will is called into play, it is very common for family members and others to find room for argument, Schneider says. Is the patient "terminally ill" as required to use the living will? If the doctor says the patient has a 50% chance of living six months, a case can be made on both sides that the patient is or is not terminally ill.
What about pain relief? Does that include inserting a Foley catheter to relieve a full bladder? "People sign these documents thinking they have made some important decisions, but in reality, they have no way to anticipate the specific circumstances," Schneider says. "You end up with someone saying, But he has a living will,’ and someone else saying, Yeah, but it doesn’t apply to this situation here.’"
What to do?
But risk managers cannot just have their staff stop promoting living wills altogether because the Patient Self-Determination Act requires hospitals to tell patients about living wills and other advance directives. Fagerlin and Schneider recommend focusing much more on the alternatives to living wills.
"Durable powers of attorney 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," Schneider says. "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."
Legally, the hospital is relieved of the burden to make decisions for the patient when a durable power of attorney is in play, he notes. The durable power of attorney is legally clear and enforceable — everything a living will is not.
"They’re documents that the court understands, and the court can just say yes," Schneider explains. "But when you present them with a living will that has all these vague terms and health care situations the court is unfamiliar with, they often start looking for someone else to make the decision for them, like the bioethics committee. The ball comes right back to you."
The Schiavo case, and many others in which parties fought over end-of-life decisions, could have benefited from a durable power of attorney, Schneider says. That is what elevates a living will from merely useless to potentially dangerous. They are dangerous when they lead patients to stop there and not create the more effective legal document, he says.
"That can lead to sticky legal problems that hospitals surely want to avoid," he says. "If I were a hospital risk manager thinking about reducing friction between me and my patients, I don’t think living wills will do that; whereas, a durable power of attorney can."
Fagerlin advises risk managers to review their policies and procedures to ensure patients are encouraged to complete both a living will and a durable power of attorney. The living will, even if it is not entirely enforceable as a legal document, can help guide the person assigned the durable power of attorney, she says.
Schneider says that if he were a risk manager, he would want the patient to assign decision-making capabilities to one person who can then address those difficult issues with guidance from the health care providers. That way, a patient’s end-of-life concerns don’t become fodder for academic questions and legal maneuvering.
"I wouldn’t want my care and end-of-life decisions to be settled in a meeting of the bioethics committee," he says.
1. Fagerlin A, Schneider CE. Enough: The failure of the living will. Hastings Center Report 2004; 34:30-42.