Giving More Patients 'A Good Death'
Palliative care offers comfort over aggressive medicine

In her job at a nursing home in Queens, N.Y., physician's assistant Donna Zaken tries to make dying as easy as it can be for patients. She runs the Margaret Tietz Center for Nursing Care's year-old palliative-care program, where she's part of a team helping terminally ill people for whom further medical treatment may be futile--and who now need comfort and peace of mind.

One of her recent patients was a 76-year-old man with end-stage Parkinson's disease. Although he was suffering from pneumonia, the medical team--with the consent of his family--chose to stop using antibiotics that were not really helping him. Instead, he was treated with acetaminophen to keep his fever down and morphine to keep him pain-free. He died in his sleep--the way he wanted to go. ''We make sure the wishes of dying patients are respected and honored,'' Zaken says. ''We want them to have a good death, whatever they define that to be.''

Nearly three-quarters of all Americans die in hospitals and nursing homes, yet few of those institutions are prepared to offer patients the kind of care they most need at the end of life. Instead, doctors routinely use strong medications and costly interventions such as defibrillators and respirators to keep the terminally ill hanging on, often in pain and discomfort.

Over the past few years, however, there has been a growing focus on palliative care, a multidisciplinary approach that emphasizes dying patients' quality of life, not the quantity of time they have to live. ''The focus isn't cure or treatment but rather comfort and compassion,'' says Dr. Russell Portenoy, chairman of the Pain Medicine & Palliative Care Dept. at Beth Israel Medical Center in New York.

The National Hospice & Palliative Care Organization (NHPCO) has more than 3,100 member programs, nearly double the number it had in 1990. And more are on the way: Grants from the Robert Wood Johnson Foundation, the Soros Foundation, and the United Hospital Fund are helping to establish palliative-care programs in communities across the country.

Thousands of physicians are being trained in the specialty through such programs as the American Medical Assn.'s Education for Physicians on End of Life Care, which teaches how to manage pain and communicate with dying patients and their families. ''Palliative skills don't come naturally to doctors. They need to learn them just as they need to learn to open a belly and take out an appendix,'' says Dr. David Weissman, who runs a train-the-trainer program at Medical College of Wisconsin in Milwaukee. The program will ultimately help to establish palliative-care components in 150 residency programs across the U.S.

Hospice, which began to take off in the mid-'70s, is the best-known type of palliative care. But the term has come to be associated with restrictive conditions defined by Medicare and insurance companies. Currently, in order for a patient to receive hospice care, at least one doctor must certify that the patient has six months or less to live and has agreed to forgo life-prolonging treatments such as dialysis, chemotheraphy, and radiation. Palliative care begins earlier in the process and allows dialysis, etc., for the sake of comfort.

Although palliative care potentially translates into a huge cost savings for the health-care system, it may be more expensive for consumers than high-tech interventions. Currently, insurance companies do not cover nonhospice palliative care. That's likely to change soon as the programs become more widespread and insurers realize the economies. The field is also likely to come under closer scrutiny as health-care institutions rush to meet consumer demand. At present, there are few safeguards to help the public evaluate palliative-care programs. The Joint Commission on Accreditation of Healthcare Organizations, a nonprofit agency that accredits 20,000 health-care providers, monitors hospice programs but not other palliative-care services. Members of NHPCO can follow a voluntary set of standards for palliative care.

In assessing a program, you should start by understanding what comprehensive palliative care includes. An important component is pain management, which the medical establishment has traditionally downplayed. But in places such as Baptist Memorial Hospital East in Memphis, patient comfort is a top priority. Phyllis Marshall, 61, dying of liver cancer, was in terrible pain that her doctor did not help ease. When she was transferred from a ward where she had been receiving radiation to the hospital's recently opened palliative-care unit, a specially trained staffer adjusted her medications until she was pain-free. A social worker visited her and her husband, Don, several times a day, and a minister came to pray with them. Marshall's husband and son have been sleeping alternate nights in a comfortable bed in her hospital room, determined to be with her at the end. ''This program has been a blessing,'' says Don. ''Seeing Phyllis die is hard enough. Knowing she's comfortable and that we can be with her makes it easier.''

Comprehensive palliative-care teams include psychologists, social workers, and clergy members who help patients deal with depression, anxiety, and fear, and grapple with spiritual issues. In model programs, patients are encouraged to talk about their feelings for loved ones, regrets, and the fences they hope to mend.

A thorough program should also include support for members of a dying person's family. Services generally include psychological and spiritual counseling as well as more practical support such as respite care from aides who relieve the caregivers so they can take a break. The focus on grieving relatives generally continues after the patient dies, in the form of bereavement counseling. Even the best palliative care cannot take away the pain of loss, but it aims to make it more manageable.


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Giving More Patients ``A Good Death''

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