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End-of-life uncertainty

Americans need to be more assertive in detailing the medical treatment they want as they age.

November 29, 2010

Americans have a near obsessive interest in death and dying. Today's most popular television series is about violent crime investigators. The biggest movie of the year is likely to be " Harry Potter and the Deathly Hallows Part 1." The bestseller list is packed with crime novels. And the latest hit video game revolves around Cold War assassins.

And yet, Americans also are notoriously reluctant to confront the realities of death itself. In particular, how is it that so few people have taken steps to ensure that their wishes will be respected if they're too sick or injured to speak for themselves?

That question is squarely posed by a recent study of end-of-life care for cancer patients. Researchers at the Dartmouth Atlas of Health Care looked at the treatment of Medicare patients over age 65, focusing on those suffering from especially lethal versions of the disease. They found that "many hospitals and physicians aggressively treat patients with curative attempts they may not want, at the expense of improving the quality of their last few weeks and months."

In Los Angeles, more than 40% of the cancer patients studied died in a hospital or intensive care unit — a setting few people would choose. They may have stayed in the hospital instead of shifting into a hospice program because they hadn't given any instructions on when to stop aggressively treating their illness. Or perhaps the instructions they gave weren't clear enough to overcome the institutional bias in favor of using all available medical means even when there's little to be gained.

There's nothing wrong with people insisting that doctors keep trying to hold back their death with aggressive interventions, no matter how bad the side effects may be or how diminished their faculties. It should be up to each individual to strike the right balance between prolonging life and maintaining its quality. What the Dartmouth study shows, though, is that "there is no consistent pattern of care or evidence that treatment patterns follow patient preferences."

In other words, unless people strongly assert their preferences, their end-of-life care will largely be determined by the prevailing customs of their communities. Those customs vary widely; for example, the study found that patients in Minneapolis were four times less likely than those in Los Angeles to receive aggressive life-sustaining treatment during their last weeks on earth.

There is a way of making one's preferences known: It requires completing a form called an advance directive. And under federal law, hospitals have to tell their patients about these forms and ask if they've filled one out. But only about 25% of the population has done so.

One reason is that advance directives have a gruesome image. They're more than just "do not resuscitate" orders — a directive could just as easily instruct doctors to take heroic measures to sustain life. Even so, a directive can be daunting to complete. Each state has its own standardized form; some of them ask only for the name of someone authorized to make medical decisions on a patient's behalf, while others invite people to declare when their doctors should switch from trying to prolong their life to reducing their pain and suffering.

For example, California's form asks people to choose between telling doctors to take all "generally accepted" measures to try to prolong their life, or to not prolong their life if they're close to death, in an irreversible coma or more likely to be hurt or burdened by the treatment than helped. It's a chillingly stark choice. The "Five Wishes" form developed by the nonprofit organization Aging With Dignity, which is accepted in California and many other states, offers a more flexible set of instructions to doctors, but it forces people to make far more decisions about their future care.

More alternatives would be welcome. In particular, rather than focusing on treatment preferences, advance directives should let people express what they'd like to achieve through treatment should they become terminally ill. Those goals — such as seeing a child graduate from high school or simply having the chance to put one's affairs in order — change as people and their families age, so advance planning has to be an ongoing process.

Another challenge is finding the right advocate for this kind of planning. Health insurers don't have the requisite credibility, given their obvious interest in cutting costs. Doctors and hospitals, meanwhile, have little incentive to do so. Medicare pays more for aggressive treatment than for "palliative" care that's aimed only at relieving pain and reducing symptoms. And physicians can't seek extra dollars from Medicare for the time they spend counseling patients about end-of-life options; when Democrats included such a provision in the healthcare reform bill, critics said they were trying to create "death panels."

Still, Medicare is encouraging doctors to offer end-of-life counseling as part of their patients' annual "wellness" visits. And states are giving them a bigger role in advance planning. More than 30 recognize "life-sustaining treatment" orders that physicians fill out in consultation with patients. Ultimately, though, the burden rests with individuals to explore their options, decide how they want to be treated as death approaches, and make their preferences known — ideally, as part of their regularly updated medical record. Those who do not make those decisions themselves will leave it to others, with uncertain consequences at the most trying times.

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