Is a Living Will Enough? : Patients Who Eschew Massive Life-Saving Methods Can't Always Have Their Way

Miriam Shuchman teaches psychiatry at Dartmouth Medical School. Michael S. Wilkes is a physician in the Clinical Scholars Program at the UCLA Medical Center. Their column appears monthly.

ONCE YOU START the medical ball rolling," a leading heart specialist explained to a group of young doctors," it is difficult--if not impossible--to stop it." The medical system, set up to save lives, is often reluctant to turn away from a dying patient--no matter what the person's wishes.

That was exactly the problem recently for a retired Los Angeles bus driver who had been suffering with lung cancer for many months. He knew he might be near death, and he and his family had spent many hours talking about how he wanted to be cared for as his health worsened. His daughter, a nurse, encouraged the discussions, saying she did not want him to suffer needlessly.

The man and his wife met with his doctor to ask questions about what they should expect, and the man decided that when his time came, he wanted to go quickly. He didn't want doctors to use life-sustaining technology to prolong his life. So he put his wishes in writing in what is commonly called a living will , but his family soon learned the limitations of such documents.

Early one morning, while standing at the stove preparing breakfast, the man felt a sudden, intense pain in his back and cried out. Seconds later he collapsed on the floor. When his wife could not rouse him, she telephoned 911 for help and then quickly dialed her daughter, who happened to live nearby.

The paramedics, who arrived 10 minutes later, found the man unconscious and without a pulse. Trying to resuscitate him, they started an intravenous line in a vein in his arm and passed a tube through his mouth into his lungs so that they could breathe for him. His heart restarted but with a rhythm too fast to let him survive. The medics prepared to shock him into a slower, more normal heart rate with high-voltage electricity, using a defibrillator.

When the man's daughter arrived, she saw her father lying unconscious on the floor with several tubes in his mouth and arms and a medic applying defibrillator paddles to his chest. "Please stop," she said. "My father wants to die without a massive resuscitation effort." But it was too late; the system had already been set into action.

Although the man had a living will, such wills do not apply during emergencies, whether they're outside a hospital or in a hospital emergency room. Emergency rescue teams must of necessity "act first and ask questions later." Otherwise, they will lose crucial time that is needed to save a person's life.

In the case of this man, the medics explained to his daughter, they had to follow planned procedures; they had no choice. They put the man in the ambulance and rushed him to the nearest hospital. There, emergency room doctors and nurses set to work--drawing blood samples, attaching wires and hooking him up to a respirator. Soon he was taken to the intensive-care unit, Heremained unconscious.

In the ICU, his wife and daughter were finally able to approach one of the doctors, who told them that despite everyone's best efforts, the man's chance for recovery was slim (he had been without a pulse for more than eight minutes) and that he probably would remain unconscious until he died.

Again the daughter explained about the living will and asked that her father be allowed to die without being hooked up to machines. The doctor said that while he would not provide aggressive care in the future, he felt he was unable at that time to disconnect the respirator.

The man's living will was supposed to go into effect when he was both terminally ill and mentally incompetent. In fact, this is always the case with living wills: They are only referred to when the patient can no longer think clearly or is unable to communicate. Yet in this case, the living will wasn't sufficient to carry out the man's wishes. This time, the doctor's own feelings about medical ethics stood in the way--even though they were at odds with the established consensus in medicine and law. Medical ethicists insist there is no difference, ethically, between discontinuing a treatment already in place and not starting a new treatment.

In the case of this man, says Dr. Chuck Culver, a physician-ethicist at Dartmouth Medical Center who has written on allowing patients to die, "once the gravity of the situation was clear, then treatment could have been stopped." Legally, California doctors have been permitted by the courts to turn off respirators in such of cases. But this doctor didn't want to do so. As an alternative, he offered to have the hospital ethicist review the situation.

By this point, the family was emotionally exhausted. The course of events might have been different if, instead of signing a living will, the man had empowered his daughter or wife to make medical decisions for him.

Living wills are vague, so it is more effective for people who want to control the care they receive at the end of life to instead grant "durable power of attorney for health care" to a friend or family member. That person can then make medical decisions when the patient is no longer competent. In this case, the man's daughter, if she had durable power of attorney, would have been able to make decisions for her father as if he were making them himself.

Over the first five days of the man's stay in the ICU, a machine breathed for him. He never awoke from his coma, and the doctors did not expect that he would. Meanwhile, the ethics committee reviewed the case and supported the family's request. The committee said the hospital should abide by what the man himself would have wanted. It interviewed family members and the family doctor and concluded that if the man had been able to direct the doctors's actions, he would have asked that the machines be unplugged. As a result of the ethics consultation, the man was taken off the respirator. He breathed on his own for about a day.

Finally, on the fifth night, his heart stopped. Several minutes later, the doctor discontinued the electrical monitors and pronounced him dead.

Decisions about whether to withdraw treatment from a patient are difficult. Living wills and, even more, the assigning of a durable power of attorney for health care, can help clarify what a patient would have wanted.

Since California passed the first "natural death" law in 1976, 40 states have legalized some form of living will, and many states, including California, permit the granting of durable power of attorney for health care to a person who will act on behalf of another. When no formal arrangements have been made, and when disagreement about a dying person's wishes persists, it may be helpful to ask whether an ethics consultant can review the particular case.

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