Living wills and advance directives were the hope for end-of-life decision-making decades ago.
“In the 1970s, we had a great confidence that there were some simple reforms that would help,” says Dr. Daniel Callahan, cofounder and president emeritus of the Hastings Center, a bioethics research center. But the reforms haven’t materialized, he says. A 2004 survey by FindLaw, which provides online legal information, found that 36 percent of Americans have a living will.
Even when people have filled out living wills, doctors often ignore them. “Good deaths are fewer than bad deaths,” says Rev. Dr. Walter Smith, clinical psychologist and CEO of HealthCare Chaplaincy, a New York research and clinical practice organization that combines palliative care with multifaith spiritual care. “When people’s wishes in the end are not honored, that’s a bad death.”
Living wills may be asking the wrong questions, says Dr. Terri Fried, researcher at the Veterans Affairs Connecticut Healthcare System. Her study in the April 4, 2002, New England Journal of Medicine, found that when older people with serious illness and limited life expectancy were told details of the outcomes and consequences of treatment, 88 percent of those who would accept lesser disabilities said they would opt out of aggressive treatment if it rendered them bed bound, unable to get to the bathroom alone, unable to recognize loved ones or in need of round-the-clock help.
“If you look at the language of living wills, they say ‘I would, or would not, want to receive X intervention,” says Fried. Better questions, she said, would probe how people want to live, or under what conditions they would not want to live.