Expanding the choices at life's end


Death: Duke University has opened a care center for the terminally ill that recognizes needs beyond the medical.

March 26, 2000|By Michael Ollove | Michael Ollove,SUN STAFF

DURHAM, N.C. -- Few regard death as a good thing, but is there such a thing as a "good death"?

Duke University believes there is and that each of us is entitled to one. Toward that end, the school has opened a $13.5 million research center devoted to the care of terminally ill patients and their families.

The existence of the institute is an emphatic assertion that the end of life need not be a choice between a lingering, painful death and a Kevorkian-style assisted suicide. There is a third option, a death carefully controlled to minimize pain while allowing the patient opportunities to come to terms with the end of life.

Named the Duke Institute for Care at the End of Life, the new center is not a medical facility -- or at least its orientation is not only toward medical care for the terminally ill. The institute was created with the conviction that death is seen too much as the professional province of doctors and nurses to the exclusion of others -- notably the clergy and social workers.

"Issues of suffering and death and dying and grief and loss go to the heart of the human condition and appropriately extend beyond the confines of the clinical professions," says Ira Byock, a prominent figure in hospice and palliative medicine who is the author of the book "Dying Well."

The institute was born from the recognition that dying patients and their families have needs beyond the medical. "Surveys show that at the end of life, people want reconciliation -- to be at peace spiritually and with their families -- and that they regard that as the most important aspect of dying, second only to a pain-free death," says L. Gregory Jones, dean of Duke's School of Divinity, where the new institute is housed.

Location symbolic

That the institute is in the divinity school is meant to be symbolic. The faculty for the institute is drawn from all parts of Duke, from the medical school and hospital, as well as the schools of nursing, divinity, and arts and humanities. The institute has links to the school of social work nearby at the University of North Carolina at Chapel Hill, to North Carolina Central University, a predominantly black college, and to St. Christopher's Hospice in London, a pioneer in hospice care.

This last relationship reflects not only the institute's shared philosophy with the hospice movement but also its origins. The impetus for the institute was Hugh Westbrook, one of the leaders in American hospices, a graduate of Duke's divinity school and a co-founder of Vitas Healthcare Corp., the country's largest chain of for-profit hospices.

Westbrook was interested in helping create an academic institute capable of studying the end of life from a variety of disciplines, in and out of medicine. When Duke proved not only receptive but enthusiastic, Westbrook helped raise $13.5 million.

Westbrook frankly acknowledges that the institute will help the growing but small hospice industry, which involves care-giving beyond that by doctors and nurses. "There's a need for research on the efficacy of hospice care from a public policy point of view, so people paying for health care will understand the value and benefit for terminally ill patients and their families."

Few argue against the advantages of hospice care and its holistic approach to death. However, most people don't die in hospices but in hospitals, where coordinated approaches are rare.

Training needed

"Several professions are involved," says Jones, "but they don't deal with each other outside the actual setting -- doctors, nurses, social workers, clergy. They don't interact in any systematic or ongoing way. That leads to patients and families receiving mixed messages or no one talking to them about the issues because everyone else believes someone else is."

Each of the professions has its discomforts in responding to dying patients, says Jones. All the professions need training and support.

For doctors treating the terminally ill, there needs to be a different gauge of success and failure than whether the patient dies, says James Tulsky, a palliative-care specialist at Duke.

A `good death'

"The question shouldn't be `Did the patient die?' " says Tulsky. "It should be `Was it a good death or a bad death?' and `Did we help the patient meet his goals at the end of life?' As doctors, we tend to think in a medical-physical box, but patients are living a total experience. At some point, the physical issues are going to take less importance than the spiritual ones."

At that point, Tulsky says, it may be time for the doctor to concentrate on relieving pain rather than using every piece of medical technology to prolong life. And it might be time to make way for others.

Many times those others are the clergy, who, Jones says, are often inadequately prepared to comfort the dying. "On the whole, the clergy has been better at funerals than we have been in caring for people at the end of life," he says.

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