We Shall Not Fear …

0 Comments | Insight on the News, Feb 26, 2001 | by August Gribbin

Some physicians and patients have accepted the hospice philosophy, an alternative approach to `end-of-life' care that can take the sting from death and bereavement.

Dying in America is more frightening and often more terrible than it ought to be, and those who know say it's the fault of doctors. Increasingly, medical and mental-health societies, hospice-care organizations and inpatient advocacy groups are focusing attention on current problems with "end-of-life" care. These engineers of change are attempting to coax physicians and the public to revise their thinking and radically alter the American way of death.

Numerous organizations are addressing the issue. The American Medical Association offers physicians end-of-life-care training (with support from the Robert Wood Johnson Foundation) featuring courses in "communicating bad news," "pain management" and "last hours of living" New York's Open Society Institute funds an educational program called the Project on Death in America, enlisting nurses, social workers, teachers, economists, artists and others in an attempt to "understand and transform the culture and experience of dying and bereavement."

A recent article in the Journal of the American Medical Association indicates why these efforts are being made. According to physician Daniel R. Tobin and psychologist Dale G. Larson, "Patients are dying after prolonged hospitalization or intensive care, often in unrelieved pain." The authors note that patients' preferences for medical care "are not adequately discussed, documented or adhered to," and that referrals to hospice and home care, "which could address these shortcomings, occur late or not at all."

Tobin, a surgeon now practicing palliative care, serves on the staff of the Veterans Administration Hospital in Albany, N.Y. Larson chairs the Department of Counseling Psychology at California's Santa Clara University. The two want end-of-life conversations with patients to become a routine part of health care, and they want such talks to occur earlier rather than later in a patient's terminal illness. The pair are pushing for creation of a new kind of medical specialist trained to lead interdisciplinary teams geared toward the varied needs of dying patients and their families.

In Peaceful Dying, his guide to end-of-life care, Tobin provides an illustration of his complaint with the current approach to death in most hospitals. He recalls the last days of a fearful 88-year old man, "dying of multiple diseases, all very advanced." The man had said he wanted "no more tests" and pleaded to return to the nursing home where he lived. Yet, writes Tobin, "For six days, doctors performed various tests. The gastroenterologist passed tubes up and down both ends to search for tumors. The respiratory specialists were taking blood gases -- an extremely painful blood test in which the blood is taken from arteries in the wrists. The primary-care doctors ordered daily blood tests to determine medication changes."

Finally, writes Tobin, the patient's heart gave out, "a full-scale code blue." The staff injected stimulants into the patient's veins and inserted an intravenous catheter into his neck as a doctor pumped his upper body, cracking his ribs. Other members of the emergency team threaded a breathing tube down his windpipe and placed electrical paddles on his chest, causing his body to jerk off the bed with each jolt of power. After 10 minutes, the team determined the man had died during the process.

"Respiratory therapists, five doctors, three nurses and three medical students all looked down at the floor, dejected," continues Tobin. "They had failed in the one thing their training had told them mattered -- they had not prevented death."

The final week of that old man's life might have been different if his wishes had been honored and appropriate arrangements made. He might have gone home. There, he could have been medicated to relieve pain. At his nursing home, skilled practitioners could have relieved or soothed the nausea, fatigue, lack of appetite, shortness of breath, swallowing difficulty and other comparatively small torments that tend to occur during the weeks or months it can take for the body to finally shut down. The patient might have had highly skilled counseling to help him overcome the dread and depression that descend on those who realize their end is near.

There is overwhelming evidence that most people want a serene, pain-free death -- witness the legalization of physician-assisted suicide in Oregon and the Gallup organization's findings in a series of national polls in the last three years. The surveys reveal that between 57 percent and 61 percent of Americans favor physician-assisted suicide under certain conditions.

But not everyone has faith in palliative care. And Tobin's observations defy current mainstream thinking. Indeed, a report by the National Academy of Sciences' Institute of Medicine notes that patients and families continue to demand treatments "that practitioners see as useless, counterproductive or even inhumane."