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The Art of Dying, The Art of Living

In his book "How We Die," Sherwin B. Nuland writes about ars moriendi, the art of dying -- an art often lost in the science of medicine, where advanced technologies can sometimes rescue patients from death, but not always rescue them from the havoc of their final illness.

Last week, writing the latest chapter in the national debate on what might be called the right to death with dignity, the Supreme Court upheld state laws prohibiting physicians from helping "terminal" patients commit suicide. By focusing narrowly on physician-assisted suicide, the court hardly resolved the broader issues raised by modern dying. Yet the justices left the door open on a continuing national dialogue on how to integrate the art of dying with the science of medicine.

The same week that the Supreme Court handed down its rulings, Takoma Park teenager Rebecca Lilly died after a six-year battle with brain cancer. While the justices dealt with the principles of dying, Becca Lilly and her family confronted the details of dying. Her odyssey was chronicled in The Washington Post over the past year and a half by health writer Don Colburn.

In general, the fear of death plays itself out in two ways. The first is when people deny the dying process by clinging to aggressive technologies that stave off death at all costs -- the "do whatever you can, doc, to save my loved one" approach to treating disease. One more round of chemotherapy. Another surgery. Devices to pump the heart, inflate the lungs. Feeding tubes for nourishment, antibiotics for any wayward infection.

A second way is to skip the dying process altogether. This is the "if I ever get that way, shoot me" attitude, which grows out of the fear of pain and disability, of losing the use of mind and body, of losing control. It helps fuel popular support for Jack Kevorkian and his exit machine; it explains people's membership in the Hemlock Society and acceptance of physician-assisted suicide as a way to control the manner and timing of their death.

The two feed on each other. The heroic rescue mission of medicine, so appropriate in many cases, can boomerang when a person is dying. Physicians and families who deny death by throwing more high-powered treatments at a patient exacerbate the fear so many of us have that when the time comes, we will become trapped in medical hell, pricked and dosed, suspended between life and death. Indeed, about 80 percent of deaths occur in the hospital.

It doesn't have to be that way. For some patients, hospice care at home or in a medical facility is an option. Becca Lilly spent her last three weeks in hospice care at home. The goal was not to fight the tumor, but to treat the whole patient -- to manage her pain and make her feel better.

"There was nothing wrong in this kid's life aside from this horrible disease," said pediatric hospice nurse Sue Eynon Lark of the Jewish Social Service Agency of Metropolitan Washington, who helped the family take care of Becca at home. "She had everything going for her. You have to attribute that to Becca's parents." She died, as she had lived, surrounded by her family, who in turn were supported by the community.

Her pain was controlled by morphine and a Valium-like drug. The dose could be boosted with a press of a button.

For many people, the fear of death centers on the prospect of suffering unremitting pain and not being able to obtain relief through medicine -- or release through death. In a perfect world, this should not be so. In her separate opinion against physician-assisted suicide, Justice Sandra Day O'Connor pointed out that "a patient who is suffering from a terminal illness and who is experiencing great pain has no legal barriers to obtaining medication, from qualified physicians, to alleviate that suffering, even to the point of causing unconsciousness and hastening death."

This is the loophole through which many people want to pass -- if their pain becomes unbearable. But personal experiences in an imperfect world with the deaths of loved ones leave survivors with real doubts that they will be able to orchestrate their own dying and successfully manage their pain. That's why polls show significant public support for assisted suicide -- a backup plan in case the dying process becomes untenable.

At the same time, a so-called good death is not just about control of pain. It's also about being connected with loved ones as Becca was.

Hospice nurses like to point out that while a terminal illness may last months or years, the actual dying process usually takes only days or a week or two. The rest of the time is spent living and taking care of those things that need to be done.

In the end, the art of dying is really the art of living. Under a six-year shadow of death, Becca Lilly lived a normal life -- playing basketball, teaching children in pre-school, going bowling in her prom dress. Only at the end did she spend her time dying.

A "good death" is really only the natural conclusion to a "good life."