The case of Terri Schiavo, the brain-damaged Florida woman at the center of a political and legal battle over her care, has sparked renewed interest in living wills and other ways people can plan for incapacitating illness or end-of-life care.
“We usually chug along with 500 new (Web site) visits but now we’re getting 20,000,” Dr. Joseph Barmakian, president and founder of the Living Will Registry, said this week.
Medical and legal ethicists interviewed this week stressed it was important for people to think about such difficult issues and talk with loved ones about values and choices.
Many experts and end-of-life organizations recommend people grant a health-care proxy, also known as durable power of attorney, to someone they trust to carry out their wishes or make values-compatible choices in case of terminal illness or incapacitation. That is true whether a patient wants the most heroic and high-tech intervention available to prolong life or wants to die quietly at home.
Some people also opt for “living wills,” which specify in writing what kind of care someone wants — or does not want — if incapacitated or near death.
Experts say a health-care proxy or living will reduces, but does not necessarily eliminate, family conflict. Even if Terri Schiavo had put her wishes in writing, it is possible her family could have still ended up in court over conflicting interpretations of what she would have wanted in circumstances none could have foreseen.
Schiavo’s parents are seeking to have the Florida woman’s feeding tube reinserted against the wishes of her husband and legal guardian.
“The bottom line — and everybody agrees, courts and legislatures — that it’s all about the patient’s wishes,” Barmakian said. “It’s better to discuss it with more than one person, discuss it with the family. That cuts off disputes later on. If everyone heard the same thing, they’ll know what you (the patient) were thinking.”
Power of attorney vs. living wills
Some ethicists prefer power of attorney to living wills, because people drafting the wills cannot contemplate all possible scenarios and choices. Someone writing a living will in 2005, for instance, cannot know what health conditions he might face in 20 years, or what technology and treatment options might be available.
“The living will has failed and it is time we say so,” Angela Fagerlin and Carl Schneider wrote last year in the Hastings Center Report. The Hastings Center is an independent bioethics research institute.
They prefer a durable power of attorney, but added living wills may be a good idea for “patients whose medical situation is plain, whose crisis is imminent, whose preferences are specific, strong and delineable, and who have special reasons to prescribe their care.”
Dr. Erik Fromme, a physician who also specializes in ethics issues at the Oregon Health and Science University, said he believed advanced directives could help physicians make decisions in keeping with the patient’s wishes. He is working with a program called Physician Orders for Life-Sustaining Treatment Program aimed at helping doctors incorporate patient choices into an actual treatment plan.
Fromme also believes living wills and other advanced directives have value. He recalled the case of one elderly man, in obvious pain and delirious. “The family was telling us that he would want to be kept alive as long as possible. Eventually we unearthed the advanced directive, and sure enough it said, 'If I’m in a state of permanent pain and suffering, I want life support and tube feeding.'"
