At face value, living wills seem like iron-clad legal documents. Signed by as many as one-third of Americans, they provide guidance about healthcare when people cannot speak for themselves.
But a growing number of studies suggest that many doctors and family members ignore living wills, without serious consequences. As a result, many lawyers are telling their clients to protect themselves by doing more than simply signing on a dotted line. Some serious introspection may be required, in addition to a willingness to broach an extremely sensitive topic with loved ones.
"We've approached living wills as a big legal thing, while we should be looking at them as an opportunity to have important conversations with [family members]," says Howard Brody, a physician and bioethicist at Michigan State University.
The documents known as living wills were considered virtually all- powerful when they appeared in the 1970s and 1980s. Amid high-profile cases of unconscious patients kept hooked up to machines, many Americans wanted to guarantee that they wouldn't face similar fates.
The advent of the Internet, meanwhile, allowed Americans to download living-will forms and complete them without help from an attorney. Earlier this year, a survey of 1,000 adult Americans by the website findlaw.com found that 36 percent said they had a living will.
But over time, legal experts and physicians have realized that the documents leave plenty of room for interpretation. While some people don't want hospitals to engage in "heroic measures" or keep them alive artificially, many medical treatments don't fit into simple categories. When faced with thorny dilemmas, doctors often choose to err on the side of treatment.
"When push comes to shove, physicians don't like their patients to die," says Doris Hawks, an elder-law attorney in Los Altos, Calif. "It's almost like they're giving up and saying they can't do anything anymore."
Family members also play a major role in influencing the decisions of doctors. In a study released in July, researchers found that 65 percent of 117 southern California doctors surveyed chose to ignore advance directives when asked to consider the hypothetical cases of six unconscious patients. Many of the doctors were swayed by the contrary wishes of the patient's imaginary "relatives." Other studies have reported similar findings.
Indeed, hospitals worry more about lawsuits by family members than by patients who are hardly in the condition to sue, says Dr. Brody.
So how do people ensure that their living wills are followed?
First, it's important to get a living-will form that follows the laws of your state, says Frank Johns, an elder-law lawyer in Charlotte, N.C. Some states, like California and New York, are especially protective of the right of citizens to control their care.
Some living-will advocates, like Margaret Lietzke, spokeswoman for the Partnership for Caring, suggest that the documents need to touch on a variety of potential scenarios. Some living-will authors, for example, might decline medical care but accept other types of basic care. Some attorneys advocate stating explicitly which treatments and forms of care are acceptable and which are not. For example, in an emergency some patients may not want other forms of medical treatment but would accept painkilling drugs.
Once these issues have been tackled, it's important to designate a person - and an alternate - as an advocate, who can speak to the wishes of someone who might not be able to speak for himself or herself.
The power of "surrogates" is not absolute, but they still have plenty of influence, experts say. Their job is to "step up and say this is what this person wants, this is what they believe in," Ms. Lietzke says.
The hardest part, however, may be having a clear and candid conversation with both the surrogate and family members. Many disputes arise when relatives urge doctors to ignore a patient's directives, says Ms. Hawk.
It's possible to write a living will that specifies that certain relatives will have absolutely no say in a person's care, says Mr. Johns. But calm family discussions will often make such difficult decisions unnecessary, he adds.
"If you do it before the crisis hits, very often you've resolved the problem," he says.
Finally, experts recommend that people distribute their living wills widely - to their relatives, their insurance company, their doctors, and even to the medical records departments of hospitals that may conceivably provide their care.
Hawks recommends that the documents be stored in glove compartments, and she says people who travel often may want to get separate living wills to apply to each state they visit. The goal, experts say, is to make sure that the documents are not sitting forgotten in a drawer or safe-deposit box.
"If no one knows you have it," Lietzke says, "it cannot be enacted."