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The final act

When patients are unable to make decisions -- and doctors and loved ones face life-or-death choices -- a living will can be a powerful tool. But sometimes, it isn't enough to ease the guilt and confusion.

November 24, 2003|Valerie Reitman | Times Staff Writer

When death seemed near at age 82, Foster Lockhart was more prepared than most people. The retired police officer and his family had talked over how he wanted to die, and he had written his wishes down in a properly witnessed document.

He had specified that his wife would make any health-care decisions if he wasn't able and that no life-support measures were to be taken if he were unconscious or there was no chance of recovery. He particularly noted that he did not want to have dialysis started under any conditions.

But three years ago when he was admitted to a Phoenix-area hospital with fluid filling his lungs, his blood pressure plummeting and a large aneurysm threatening to erupt, his wishes were ignored, says his daughter, Carol Lockhart. The hospital started preparing him for dialysis at the behest of his doctor.

Though "advance directives" such as Foster Lockhart's are at least in theory legally binding -- in reality, they have their limitations. Sometimes they simply are not followed. Family members may disagree with them or with one another, leading to lengthy legal delays. The documents cannot usually specify the moment when "enough is enough." And patients and their families also have to fight physicians' efforts to keep the patient alive.

In the last few weeks, thousands of Americans have requested the directives, also known as "living wills," which outline how patients want to be treated in the event they can't communicate their wishes. The interest has been prompted, say agencies offering the forms, by the Terri Schiavo case in Florida -- in which the state Legislature and Gov. Jeb Bush have intervened to continue life support for a 39-year-old woman who has been in a vegetative state for 13 years.

Having such a document can certainly help eliminate confusion about the patient's desires and often can spare family members guilt. Had Schiavo written down her wishes and had them properly witnessed, it would undoubtedly have made it easier to terminate life-support systems -- as her husband claims his wife said she wanted -- because most courts will honor the patient's wishes. (A state court had agreed to stop life support before the Legislature and governor intervened; Schiavo's parents want it continued.)

But a directive doesn't automatically prevent all problems.

When Carol Lockhart asked if her father could possibly survive even with the dialysis, the doctors said he could not. "He's going to die anyway," she remembers pleading with hospital doctors as she and her mother urged them to honor her father's wishes.

Only after she brought in a hospice physician to plead the case did the hospital staff finally cease the treatments.

"Advance directives are funny things," says Dr. Neil Wenger, a medical professor at UCLA and director of its new Healthcare Ethics Center. "You can fill one out and it wouldn't guide much," he says.

Unless the document directly specifies a surrogate to make the health-care decisions on behalf of the patient -- or describes the exact health situation, which is difficult to predict, "it's unlikely to go too far in alleviating a controversy," Wenger says.

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Key documents

Requirements for advance directives vary by state. Generally, two documents are called for: a living will, or instructions describing the treatment one would want if too sick to communicate; and the designation of a "durable power of attorney for health care," to make decisions on your behalf. In California, they are combined in a single document called an "Advance Health Care Directive."

The living will can be simple, reflecting the quality of life the patient would want to maintain, or specific, outlining what he or she would want in various scenarios -- from forbidding electroshock therapy in case of admission to a psychiatric hospital to differentiating between a coma and a vegetative state. The patient can also specify that he or she wants to be kept alive by all available means.

Also available are "do-not-resuscitate orders" in the event of cardiac arrest. They must be signed by a physician and tend to be used only if the person has a terminal condition.

One reason advance directives aren't always followed is that technology can now keep patients alive in situations that usually cannot be anticipated -- or described -- by the layperson.

"Most people are not well enough informed to know what they might need, particularly younger, healthier people," says Barbara E. Volk-Craft, co-director of Healthcare Decisions, part of a Phoenix-based hospice program that educates people and institutions about the directives.

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