Senior Health - What Can Be Done To Improve The Quality Of Dying?: Hospice Care And Pain Control

"We know with near certainty that the majority of patients who die in this country die with pain that they do not need to have, with dyspnea [difficulty breathing] that could be relieved, in isolation rather than in the comforting presence of loved ones, with desperate meaningless, last-ditch therapies they do not want and that cannot help them." — Donald M. Berwick, MD

Almost 2.5 million Americans die each year. Most of them are over the age of 65. Eighty percent die in hospitals. In "the place of solitary death,"²⁵ we succumb to acute illnesses that often involve interventions like intensive care, mechanical ventilation, or major surgical procedures — whether we want them or not. Hospice care is an alternative to this kind of death. The chart shows Medicare payments for hospice care from 1980-1999. Payments rose 786%, from $318 million to $2.8 billion.

Hospice care has grown rapidly since the nation's first hospice opened in 1974. Five years earlier, Elisabeth Kübler-Ross argued in her book On Death and Dying that for most people at the end of life, hospice care is a better alternative to dying in an institution. Most people, when questioned about dying, will cite dying alone and in prolonged pain as their greatest fears. Hospice care addresses both of these issues. Hospice care is intended exclusively for the terminally ill and their families and takes place primarily in the patient's home. A team of doctors, nurses, home health aides, social workers, counselors, and trained volunteers provides pain treatment and palliative care (care that reduces the violence of a disease) with the aim of easing dying. Although it sounds like a good (and less expensive) alternative to an institutional death, hospice care accounts for only about 1% of total Medicare outlays. The reason has to do with longstanding attitudes toward death on the part of the medical establishment.

Today, the American medical community stands accused of prolonging life past all hope through technology (thereby extending the process of dying), of failing to respect dying patients' wishes for their own care, of making decisions based on financial considerations rather than compassion for the dying, and of failing to make full use of hospice care.

A CDC survey showed 52,100 patients receiving hospice care in 1992. By 1998, there were 79,837 patients being served by about 3,000 hospice organizations, a 53% increase. The small chart shows the primary admission diagnosis of hospice patients in 1998. According to Dr. Jill A. Rhymes: "Only approximately one third of cancer patients receive formal hospice care, often in the last few weeks of their illnesses. Patients with other terminal illnesses (eg, progressive neurological illnesses, end-stage cardiac or pulmonary disease, and acquired immunodeficiency syndrome [AIDS]) are even less likely to be admitted into hospices, and palliative care may be unavailable or inadequate for those outside of hospices."

Hospice Patients by Primary Admission Diagnosis

How many dying people actually experience unbearable pain? Dr. Timothy Quill, a spokesman for the assisted-suicide movement, estimates that only 2-5% of terminally ill patients find themselves in intractable pain (and that doctors have a moral duty to help them). A 1997 study called SUPPORT²⁶ e. Nine thousand patients were studied; 46% died during the study. Of that 46%, about 40% "were in either severe or moderate pain for most or all of the last three days of life — pain … that could have been alleviated through medication." Nearly half of the 4,100+ patients who died were subjected to aggressive measures to keep them alive (tube feeding, mechanical ventilation, attempted resuscitation). Dr. Albert W. Wu, who collaborated on the study, said: "We talk about heroic measures, extraordinary measures, but most of those words don't have negative connotations. We don't say that people were tormented until they died, but if we're to believe the results of this study, people were in pain until the end."

The attitude of the medical establishment towards hospice care and pain control is problematical. Why are medical practitioners so willing to prolong life in a hospital and so loathe to prescribe pain medication? Nuland writes of doctors' fear of failure, their "need to control [the dying process] that exceeds in magnitude what most people would find reasonable," their view of themselves as warriors and death as "an implacable enemy" that must be vanquished. Often cited is doctors' very real fear of losing their license,²⁷ or fear of patient addiction or the sedative or respiratory depression side effects of narcotics.

Why have doctors been slow to refer patients to hospice care? One reason is a Medicare requirement that doctors say with certainty that a hospice candidate has six months or less to live. Evidence that hospices are underused may be found in statistics like these from Michigan: The average length of hospice care in 1997 was 20 days and 30-40% of patients died within 7 days of initiating hospice treatment, although Medicare provides for a six-month stay. This means patients were nearly dead when they came to hospice care, when they might have benefited from the comfort to be found in such a program.

There has been criticism of current hospice care. Dr. Rhymes complains that hospice care is not well integrated into the established health care system and is underrepresented in inner cities and rural areas. She contends that "formal palliative care is available only in a package that many patients and families may be unable or unwilling to accept." She says hospice care teams may consist of completely different people from those who had cared for a patient previously, causing a separation trauma when patient and family are already traumatized. Furthermore: "To enter a hospice, patients and families must forfeit other forms of or access to health care, accept only palliative care, and make no attempt to prolong life."

This is the modern way of dying. Next we look at the movement to put some decisions about dying in the hands of those most intimately affected.

Sources: Statistical Abstract of the United States 2001. Nuland. How We Die. New York: Vintage Books, 1995. Adam Marcus, "Death Be Not Painful." Johns Hopkins Magazine (September 1997). Jill A. Rhymes, M.D., "Barriers to Palliative Care," http://www.moffitt.usf.edu Gregory Brusstar, "Michigan: Toward Physician-Assisted Living — Improving End of Life Care," http://www.medem.com. JAMA Patient Page: Decisions About End-of-Life Care, http://www.medem.com.