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Where There’s a Will, There’s Not Always a Way

Living wills often aren’t enough, experts warn

The New Hampshire woman didn't foresee the turmoil her daughters would face when a surgery-related stroke left her partially paralyzed and unable to communicate.

She had made out a living will, a legal document that spells out preferences for end-of-life care, when she was still healthy and declared her desire for emergency resuscitation on the assumption it would return her to good health. Now, her daughters insisted, their mother, in critical condition, would never want resuscitation, in spite of her written preferences.

That’s a quandary many families confront, experts says, and living wills alone do little to help.

Living wills are expensive and ineffective, a public policy bust, Angela Fagerlin and Carl Schneider of the University of Michigan wrote last year in the Hastings Center Report, a leading ethics journal. That blunt assessment, coupled with the celebrated legal battle over life support for Florida’s Terri Schiavo, has reopened the question: how can a person make his or her end-of-life wishes known and be sure they’re granted?

"If you're going to choose one thing to do, it should in most cases be a health-care power of attorney," says James Bernat, M.D., a neurologist and bioethics committee chair at the Dartmouth-Hitchcock Medical Center in Lebanon, N.H. This document gives a person you select as your proxy the legal right to make medical decisions for you if you become incapacitated.

"The current movement is to have both, to combine a living will expressing your wishes with a health-care power of attorney," says lawyer Sally Hurme of AARP's consumer protection division.

Living wills, held by only 18 percent of Americans, originated because medical technology was extending life but not always its quality, says Charles Sabatino of the American Bar Association's Commission on Law and Aging. They gave people facing death a way to express a desire for comfort care over a painful high-tech treatment.

But they often don’t do the job. "Living-will statutes are premised on the fiction that we have a crystal ball and know what's coming and what we want," Sabatino says. "Most of us are fairly ambivalent about dying, all things considered. Dying is messy; it doesn't lend itself to canned prescriptions like living wills."

Neurologist Bernat, former chair of the American Academy of Neurology's ethics committee, says the documents often are too vague. Or they’re "obsessively specific, with page after page of scenarios" about when CPR, hydration or feeding tubes can or can't be used.

Other downsides: many people fail to give their living wills to their doctors and other caregivers. Or they don’t update them. And some doctors simply ignore the documents.

Most Americans are confident their families will make the best decisions for them. Hospice expert Joanne Lynn, M.D., who heads the Washington (D.C.) Home Center for Palliative Care Studies, has argued that point, noting that family members focus less on procedures and more on the outcome for the patient.

Research has also shown that surrogates without benefit of a living will can predict their relative’s preferences as accurately as those guided by a living will.

Still, a person’s preferences about emergency medical treatment are important, and every state has legal guidelines for such directives. But even more important is talking with family members, so there are no surprises when the time comes.

Carla Braveman, executive director of VNA/Hospice Alliance in Northampton, Mass., says her hardest cases involve families whose members have radically different opinions about appropriate medical care. When a healthy parent is suddenly incapacitated, she says, "You've got five kids. . . with five different sets of ideas about 'what Ma wants.' "

Sometimes the person named as the decision maker doesn’t even know it until a crisis occurs. "You need to be upfront with your proxy and have ongoing discussions about what your wishes are," Braveman says. "You need to tell your family members so if there is disagreement about treatment, there will be support for the proxy."