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.
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.
Typical "advance directive" documents describe general scenarios and leave room for patients to indicate any specifics. For instance, a common one known as "Five Wishes" says if "my doctor and another health-care professional both decide that I am likely to die within a short period of time, and life-support treatment would only delay the moment of my death," (choose one): "I want to have life-support treatment, I don't want life-support treatment. If it has been started, I want it stopped," or "I want to have life-support treatment if my doctor believes it could help. But I want my doctor to stop giving me life-support treatment if it is not helping my health condition or symptoms."
But when a patient is rushed to the hospital, the first priority for the medical staff is to keep the patient alive.
"When you get caught in high-tech lifesaving, aggressive management of treatment," says Volk-Craft, "it's hard to stop that train."
Nearly every day, emergency room workers face some dilemma about resuscitation -- either what they think is the best thing or what the family wants, says Dr. Catherine Marco, an ER doctor in Toledo, Ohio, who also chairs the ethics committee of the American College of Emergency Physicians.
Surveys suggest a wide range in how such situations are handled across the country, she says. Few patients have directives -- estimates vary from 10% to 20% of Americans -- and even those who do often arrive at the hospital without them, with their loved ones not knowing where the document is.
"We found some [doctors] very lenient and will accept the family's word, while others are very strict and will attempt to resuscitate unless they have a document in hand," Marco says. "The problem is bridging the gap between what the patient wants and what we do."
Legal concerns also factor into most physicians' thinking. In a recent survey, 94% of emergency physicians said concerns that they'd be sued (if they didn't do everything possible) influenced their decision-making, even though 78% said that in a perfect world, they shouldn't.
Some families deliberate for days even when they have the patient's directive in hand, medical officials say. "There's a tremendous amount of stress if everybody doesn't agree," says the Rev. Karyn Reddick, director of pastoral care at Long Beach Memorial Medical Center. In those cases, clergy, medical staff and family will discuss the matter together. "It takes a lot of time to work through the issues and come to a place" where the entire family can live with the decision.
While most people designate a spouse, parent or adult child as the surrogate decision maker, sometimes the designee will not know the patient's wishes or even that he or she has been entrusted with making the decisions.
Particularly problematic are the cases in which the person leaves the decision up to someone other than a spouse or children, says Wenger, of UCLA's ethics center. In these cases, it's important that the person explain his choice to his doctor and family when he fills out the advance directive. "Think of the problems when it comes out that the golfing partner gets to decide, and the spouse and children are left to wonder why they weren't chosen," Wenger says. "The goal is to alleviate controversy."
In cases where there is no directive, most states specify a hierarchy -- with an unestranged spouse usually given such decision-making power, followed by an adult child or parent.
For example, a woman treated at UCLA for a brain disease had an advance directive specifying that the husband was to make decisions on her behalf, and that her estranged sisters in another country were not to be contacted.
Before they had seen the advance directive, the hospital contacted the sisters. When the rest of the family arrived, they wanted everything done, although the husband insisted she wouldn't want that.
But when family members were shown the advance directive with the patient's wishes clearly listed, they stopped protesting. "Simply circulating that advance directive to her family was very useful," Wenger says. "If it's not clear who your surrogate would be, or your family is likely to argue or they wouldn't know your preferences, an advance directive is a wonderful way of indicating it."
Without a directive stating otherwise, a gay or co-habiting partner would legally not have any influence in most states, says John Mayoue, a family-law attorney in Atlanta, who notes that 5 million people in the last census were in such relationships. He urges people to reinforce their written wishes with a video of themselves that can be played for family members.
Still, having a document can ease any lingering guilt for the surrogate, who often is their spouse or closest relative and might have the most difficulty deciding to end the person's life because they will be the most bereft.
Not long after being diagnosed with ovarian cancer four years ago, Nellie Ortega insisted that her husband, Ruben, sit down with her to discuss the care she wanted. She wrote an advance directive and designated her husband as decision-maker.
She was hospitalized several times for treatments that failed to halt her cancer. Last year, she decided enough was enough. She told her husband that she did not want to be resuscitated and that she wanted her feeding tube removed.
Two days later, Ruben summoned paramedics when Nellie started having difficulty breathing. They gave her oxygen and suggested bringing her to the hospital. "My first wish was to keep her alive at all costs," says Ruben, who lives in Glendale, Ariz. "But then I remembered what she wanted. I brought out the advance directive."
She slipped into a coma and died in a few hours.
"As difficult as it was, it was made easier by the fact that I was doing what she wanted me to."