TUESDAY, May 18, 2004 (HealthDayNews) -- They've been embraced by the American public, the medical and legal establishment, and federal and state law. But emerging evidence suggests "living wills" may not be living up to their promise as useful guides for families faced with tough decisions about end-of-life care.
"There have been many versions of the living will, and all versions have failed in doing what we wanted them to do," said Angela Fagerlin, a medical research scientist at the University of Michigan, Ann Arbor.
Writing in the March-April issue of the bioethics journal The Hastings Center Report, Fagerlin and co-author Carl Schneider, a University of Michigan law professor, reviewed the results of hundreds of studies on the effectiveness of living wills. Their conclusion: "The living will has failed, and it is time to say so."
In 1975, 21-year-old Karen Ann Quinlan collapsed after swallowing a potent mix of alcohol and tranquillizers while partying with friends. Quinlan lapsed into a coma, and her parents' legal struggle to remove her from ventilators and grant her the "right to die" ignited a debate on end-of-life care that has raged ever since.
That debate flared up again this year as the parents of comatose 38-year-old Florida native Terry Schiavo mounted a legal challenge to her husband's wish that his wife be disconnected from life support. Both parties claim to be speaking for Schiavo.
Battles like those gave rise to the advance directive or living will, which proponents believe gives the patient a strong voice in decisions like these when they are unable to speak for themselves. The living will movement gained momentum in the 1980s and 1990s, and the federal Patient Self-Determination Act now requires all U.S. hospitals to provide patients with information on living wills.
The problem, Fagerlin says, "is that living wills were never scientifically tested. You think they are going to work -- and in theory they work -- but when they were finally tested they were found to be ineffective."
Living wills fail on many counts, she and Schneider claim. First of all, despite years of advocacy, the vast majority of individuals do not complete an advanced directive. Many just procrastinate, Fagerlin said, while others "think that living wills are for the infirm or elderly."
Many others may be unsure as to whether they can predict decisions they might make months or years ahead of time. "In some studies researchers have asked people, 'OK, you have this living will, but how much do you want it followed?'" Fagerlin said. "And what they find is that two-thirds of people say, 'I don't really care how closely it's followed.' They just want the person they trust the most to make these decisions."
In study after study, the Michigan team also discovered that end-of-life decisions change radically as a patient's health declines. As physical health deteriorates, patients begin to acquiesce to medical interventions they might previously have rejected. In one study, "people filled out a living will, and then we went back to them two years later," Fagerlin said. "We found that people's preferences had changed, in significant numbers. And the vast majority of those people weren't even aware of the change in their thinking."
Many patients also fail to articulate their wishes in clear, specific language -- leaving loved ones confused as to how to act in times of crisis, Fagerlin said.
For example, in one study the Michigan researchers tested people's ability to predict a loved one's life-support preferences in hypothetical, real-life situations. According to Fagerlin, time and again they found that "people who had living wills did not do any better predicting their loved one's life support preference than did the group with no living will."
So what's to be done? Beyond questions of efficacy, living wills have financial costs, too. Experts have calculated that following the implementation of the Patient Self-Determination Act, U.S. hospitals spent more than $100 million in start-up costs to provide patients with information on living wills as required under federal law.
Based on their review of the literature, Fagerlin now believes people must rethink the value of the living will.
"I think we would have to come to an agreement at the Congressional --or at least the hospital -- level that a durable power of attorney is the same as a living will, and what the surrogate says, goes," she said.
Dr. Joseph Barmakian is a New Jersey orthopedic surgeon and a founder of the U.S. Living Will Registry, an electronic storehouse for advance directives created so that patients can easily retrieve living wills in time of need.
Barmakian said he "doesn't disagree with the article." But he believes living wills still have an important role to play as a tangible record of an individual's philosophy on end-of-life care.
"The living will is not a perfect document," he said. "But what's really important is to have a discussion around the kitchen table with your family, so they understand what you're thinking about, what your philosophy of life is," he said. That way, if and when a loved one is incapacitated, "we can look at this document, which kind of memorializes that discussion."
Barmakian believes the best protection a patient can have for appropriate care in times of crisis is a combination of detailed verbal discussion, a durable power of attorney (passing on decision-making responsibility to a trusted loved one), and a living will.
For her part, Fagerlin stressed that she "applauds" the efforts of the right-to-die movement in addressing such complex issues. But in the end she believes the problem is much larger than any one document.
"It's not that this one form, the living will, is bad," she said. "It's just human psychology. We simply can't predict what we are going to want in situations we know little or nothing about."
In the end, she said, studies suggest that what most people really want is for those who care for them to make the best decisions possible in impossible situations.
"Leaders who are thinking about legislation on this issue need to think about the fact that people don't often want to 'control' the end of life," she said. "They just want someone to make good decisions for them, and for that someone to feel good about the decisions they've made."