The Culture of Death

And why we need to cultivate it.

Politically, the time is coming when terminally ill patients in Washington will be able to end their lives when they choose. Last fall, the U.S. Supreme Court upheld Oregon's Death With Dignity Act, which set up a process by which a terminally ill patient in that state can request, and a doctor can prescribe, medication that the patient can use to end his or her life. Here, former Gov. Booth Gardner, who suffers from Parkinson's disease, has signed up to lead an effort to pass a similar law.

It may take a while. Washington voters have already defeated one death-with-dignity initiative at the polls, and the Legislature failed to pass a bill in the session that ended last week. But I think it's only a matter of time that in this biomedically advanced corner of the country we'll take the plunge. A ballot initiative is being planned for 2008.

Which gives people time to study the issue. It's good to think hard about such laws. They can have profound implications. Do we really want more state- sanctioned killing? Have we really thought about what it means to allow doctors to help patients die? There is a potential slippery slope here that must be acknowledged. The promoters of modern science and progressive public policy in the early 20th century were major proponents of eugenics, euthanasia, sterilization, and abortion, all in the name of ending human suffering. We know that some people took these ideas to extremes that we are rightly determined not to repeat.

From a policy standpoint, the Oregon experience is reassuring. In its eighth annual report on how the Death With Dignity Act is working, Oregon's Department of Human Services announced last week that assisted suicide there continues to be rare. Patients tend to be elderly and suffering from terminal illnesses like malignant cancer or AIDS. Only 38 patients took the kill pill last year, 37 the year before, and only 246 patients have in the eight years. Most were over 65. So far, Oregonians don't seem to be sliding anywhere.

Beyond the statistics, there are moral, spiritual, and philosophical considerations. Most of us don't encounter these unless we've actually had to wrestle with them at the bedside of a dying loved one. Fortunately, there are two self-published books by local doctors that bring the painful dilemmas of the dying room into focus. Both books are highly personal; both take you to places where you witness through their eyes the end-of-life decisions; and both explore the conflicts faced by doctors who are sworn to protect life but must contend with terminal patients' suffering.

First is The Good Doctor Naked: Finding the Human Beneath My Mask, by Robert Hardy Barnes (iUniverse, $20). Barnes is a now-retired Seattle doc and family friend who some years ago made the radical step of taking off the white coat to offer pastoral care to patients, an act that caused the medical director at Swedish Hospital to conclude that "Barnes has a screw loose." Spiritual healing and medical practice are a church and state most doctors expect to keep well separated, but Barnes was both a healer with an identity crisis and an extremely compassionate doctor. He sought to integrate his life, his profession, and his spiritual yearnings into a whole. In this autobiography, Barnes explores how the practice of medicine works against wholeness and rewards doctors who hide behind their masks, surgical and otherwise.

Such masks can slip in the face of mortality. For Barnes, it happened when he came to terms with his father's suicide. But he also recounts profound experiences, such as the illness and death of his good friend, former Seattle School Superintendent John Stanford, in the chapter "Even Heroes Die." It taught him some lessons about death. Don't expect miracles from the dying, he says. Nor heroics. But facing death and its mysteries can result in profound healing for the living, including doctors, if they're open to it.

The second is Patient-Directed Dying: A Call for Legalized Aid in Dying for the Terminally Ill by Tom Preston (iUniverse, $18). Preston is a former professor of medicine at the University of Washington, where he worked for more than 20 years. The first chapter, "As Mom Lay Dying," originally appeared in Seattle Weekly (Sept. 22, 1993), and it sets the stage for the rest of the book: Preston's decision to end life-extending measures for his mother. "Although I will always be nagged by the thought that I pulled the trigger on my mother," he writes, "I know what I did was right for her." He follows with a series of case studies that allow him to make his points in the form of dialogues with patients and their families. He contends that prescribing potentially life-ending medication to the terminally ill is neither condoning suicide nor committing murder, and no more morally slippery than the accepted and ethical practice of withdrawing care.

Preston is a passionate advocate for reorienting modern medical practice to accommodate the management of death. If doctors can artificially extend "natural" life, he argues, they also have a responsibility to help manage life's end. In Oregon, it's not "doctor-assisted suicide," he says, but rather "directed" aid for patients in dying. Respect for death must be integrated into care. Prolonging life as long as technology allows is not the answer.

"We must understand death as part of the human condition," Preston concludes. "We must acquire respect for the sanctity of death."

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