DO YOU KNOW SOMEONE WHO NEEDS HOSPICE?

The hospice movement began in the 1960s in England by Dr. Cicely Saunders who founded St. Christopher’s Hospice near London. St. Christopher’s was the first organization to offer a team approach to caring for dying patients as well as modern techniques for controlling pain and other symptoms characteristic of dying patients. About ten years later, the hospice movement began to take root in the United States and in 2005 hospice programs cared for almost 1.2 million dying patients. Today, eighty percent of hospice care is provided for patients at home, in a family member’s home or in a nursing home. Less commonly, dying patients may receive care in an inpatient hospice facility.

Hospice is generally intended to serve patients with a terminal illness who have an estimated life expectancy of six months or less. However, a hospice patient who lives longer than six months can usually have his or her enrollment renewed. The median length of hospice service is only 26 days, with one-third of patients referred during the last week of life. Initially, hospice was intended to serve cancer patients who currently comprise about 50% of hospice patients. The scope of hospice patients has expanded and now heart disease, dementia, lung disease, kidney disease, and liver disease account for 30%, with AIDS and other diseases making up the remaining 20%. Patients enrolled in hospice typically no longer pursue aggressive curative treatment for their disease such as chemotherapy or surgery although they may still be treated for unrelated illnesses such as infections or injuries.

Medicare is the primary payer for hospice care in about 80% of cases. Commercial insurers usually offer hospice benefits although the level of coverage varies. Medicare pays a fixed sum per patient to the hospice organization from which all medical care related to the terminal diagnosis must be paid. In other words, items such as blood tests or chest x-rays which a physician feels are necessary for patient care must be paid for out of Medicare’s per diem hospice benefit. This puts pressure on the hospice administration to limit patient access to the acute care medical system. Medicare does allow short-term hospital admissions for symptom control, which are paid for outside of the hospice benefit.

Hospice offers many benefits – primarily comprehensive interdisciplinary care with teams made up of nurses, physicians with expertise in hospice care, medical social workers, volunteers, chaplains and nursing aides. Services are available 24 hours a day, seven days a week. Many primary care physicians lack expertise and experience in dealing with symptoms typical of the dying experience such as pain and inability to eat or drink – in hospice care, patients have access to a team uniquely qualified to ease their suffering. Hospice organizations are required to offer grief counseling to survivors for one year after the patient has died. Finally, hospice provides for admission to a nursing home or inpatient hospice facility for three-to-five days to give the caregiver a rest.

There are many barriers to the referral of patients into a hospice program. Many referring physicians feel that they lose control over a patient’s basic medical care. Patients and families often worry that if they go into a hospice program, their medical care may suffer and they may even have a more rapid death. Frequently, doctors, patients and families are reluctant to acknowledge or discuss the fact that a patient’s illness may be terminal or they may feel that entering hospice signifies giving up hope. Nevertheless, patients and caregivers who use hospice are almost universally satisfied with one study showing 98% of families willing to recommend hospice care to others in need.

Dr. McMahon, a graduate of Yale University and the University of Pittsburgh School of Medicine, is board certified in Internal Medicine. She is a member of the American College of Physicians and the Allegheny County and Pennsylvania Medical Societies. She is in solo practice in the North Hills of Pittsburgh.