Advance Directives

Photo by Mark Warner
Most Americans are unprepared for the worst to happen—an accident or an unexpected illness that leaves them brain dead, but still alive. That’s what happened to Terri Schiavo, a young woman who became comatose after suffering a heart attack in 1990. Schiavo was kept alive by a feeding tube for fifteen years. During that time, her husband tried to withdraw the feeding tube, but was adamantly opposed by Schiavo’s parents, Congress, and President George W. Bush. After a highly publicized legal battle, the feeding tube was finally removed and Schiavo died seventeen days later. This protracted battle might have been avoided, if Terri Schiavo had completed a document known as an advance directive.

Post–Terri Schiavo

Leah Brueggeman

Eighty-one-year-old Leah Brueggeman wants her intentions made clear, in the event she is unable to express her wishes for medical treatment. She and her husband live in La Crosse, Wisconsin, and they completed their six-page advance directives in 2009 with the help of an attorney. “We don’t want to be put on feeding tubes indefinitely,” said Leah, “If there’s no chance of recovery—just let us go!”

The advance directive is a legal document that has two parts. One specifies the kind of medical care a patient wants if he is no longer competent. For example, CPR if his heart stops, feeding tubes if he can no longer eat on his own, IV fluids for hydration. Or he can refuse any or all of these interventions. The patient also designates someone trusted who can make medical decisions on his behalf if he is unable to. The Schiavo case brought more public attention to the importance of having an advance directive. But that interest quickly receded. Today, only a third of all Americans have completed an advance directive.1 Dr. Ruma Kumar, palliative care specialist and a regional medical director with Kaiser Permanente of Northern California, says that many patients are too afraid to plan for their future health care and their doctors are often reluctant to bring up planning. According to Kumar, doctors don’t have the time to engage their patients in extended end-of-life conversations. “Or if you bring up planning, you might make the patients nervous that you’re giving up hope in their treatment plan,” she said.

Limits of Advance Directives

But even if an advance directive is completed, a patient’s stated wishes may not always be carried out. The document can get overlooked, misplaced, or ignored by medical staff,2 as Katy Butler found out. “Hospitals are a world of their own,” said Butler, “It’s like a foreign subculture. And once you enter into that system, it can be very, very difficult to get your wishes put into practice.”

Katy Butler is a Bay Area journalist who wrote the best-selling memoir Knocking on Heaven’s Door: The Path to a Better Way of Death.3 In her book, Butler described her own difficult experiences, trying to get her father’s advance directive enforced. She recalls going up against a wall of resistance when his physician refused her request to withdraw treatment for her dying father.

Butler’s father was 79 when suffered a major stroke in 2002, which caused brain damage and dementia. He had a weak heart and Butler says he probably would have died of natural causes within two years following the stroke. But his pacemaker kept him alive for the next six years. In her memoir, Butler says that the extra years of life caused him great misery. “The tipping point had come,” she writes, “Death would have been a blessing and living was a curse.”

As her father’s designated medical agent, Butler went to his cardiologist and requested that the pacemaker be turned off. “The doctor not only refused to cooperate—he really treated us as if we were some kind of moral monster,” said Butler, “Technically according to the law, you have the right to refuse any form of medical treatment and you have the right to request the withdrawal of any form of medical treatment. But you’ve got an advanced device like a pacemaker—you don’t know how to turn it off. You don’t know where to go to get someone to help you turn it off if your cardiologist is saying no.”

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