Hospice Care

Key Points

• Hospice care is intended for patients with a prognosis of 6 months or less.

• Most patients are referred too late, with a reported median survival only 3 weeks.

• A primary goal of a hospice is to support the patient's wish to die at home.

• The hospice team gives around-the-clock support to the family, relieves them at times to prevent burnout, and provides follow-up bereavement care for up to 1 year.

"Hospice" originally meant a way station for pilgrims and travelers, where they could be replenished, refreshed, and cared for if needed. The Irish Sisters of Charity viewed death as one stage of a journey. They opened hospices for dying patients in Dublin in 1879 and in London in 1905. These were places where dying people could be cared for when such care could not be managed at home.

Cicely Saunders was trained as a nurse and social worker in London in the 1940s. She cared for a dying cancer patient who made a £500 donation to "be a window" in the special home for the dying they both knew was needed. Ms. Saunders went to medical school and then worked in St. Joseph's Hospice in London from 1958 to 1965. She discovered the effectiveness of interdisciplinary team support, scheduled doses of oral opioids, and other methods to relieve the symptoms and stresses of her patients and their families. She opened St. Christopher's Hospice in south London in 1967, and the modern hospice movement was born. In 2008 there were almost 5000 hospices in the United States alone.

The hospice concept can benefit patients and families wherever death takes place. A hospice program consists of palliative and supportive services that provide physical, psychological, social, and spiritual care for dying persons and their families. Services are provided by a medically supervised interdisciplinary team of professionals and volunteers and are available both in the home and in an inpatient setting. Home care is provided as necessary: on a part-time, intermittent, regularly scheduled, or around-the-clock on-call basis. The hospice concept is directed toward providing compassionate care for people facing a life-limiting illness or injury. Hospice and palliative care involve a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes. Support is provided to the patient's loved ones as well. At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so (www.nhpco.org, 2009).

The principal requirement for hospice admission is a life-limiting illness with a prognosis of 6 months or less, should the disease run its normal course, as certified by the patient's physician and the hospice physician. eTable 5-3 lists the standards of a hospice program as developed by the National Hospice and Palliative Care Organization (NHPCO).

The interdisciplinary hospice team consists of a patient care coordinator, a nurse, a physician, a counselor, a volunteer coordinator, and spiritual support. Medical services are on call 24 hours a day, 7 days a week. Continuity of care by the same group of team members provides a familiarity that is comforting to the patient. Volunteers are an integral part of the program and provide many helpful services. Hospice services are covered by Medicare, Medicaid, and most insurance companies to some extent. Some hospices are able to provide charity care.

To qualify for hospice under the Medicare Hospice Benefit, a patient should have a life expectancy of less than 6 months. Again, however, referrals are usually made much too late. A study of five hospice programs in Chicago showed that the median survival after referral was only 24 days (Stone, 2001). In fact, 7% of patients referred to hospice die within hours of admission. This may be because survival estimates by physicians at admission are accurate only 20% of the time, 63% being optimistic and 17% pessimistic. The longer the physician had cared for the patient, the more optimistic the prediction. In 2009 the median length of stay in a hospice was only about 26 days, with one third enrolling in the last week of life and 10% on the last day of life (www.nhpco.org). Family physicians should discuss hospice care when there are still options, not at the end of life.

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