Medical Infrastructure - Hospice Care

"Palliative care focuses on quality of life, control of pain and symptoms and attention to the psychosocial and spiritual experiences of adapting to advanced illness. Hospice care is a specialized and intensive form of palliative care for patients with advanced, life- threatening illnesses and for their families, emphasizing quality of life, life-closure issues and the relief of suffering" (Beresford).

In 1963, Dr. Cicely Saunders gave a lecture at Yale University on holistic hospice care to students, nurses, social workers, and chaplains. The lecture included photos of terminally ill cancer patients and their families. They showed the differences before and after such care. At the time, Dr. Saunders was in the midst of establishing the first hospice in England, St. Christopher's. In 1965, the Dean of the Yale School of Nursing invited Dr. Saunders to become a visiting faculty member for the spring term. Students who heard her lecture opened the first hospice in the United States in 1974, the Connecticut Hospice. That year, a Connecticut Hospice nurse and a volunteer made their first visit to the home of a terminally ill patient, pioneering the Hospice Home Care movement. In 1980, Connecticut Hospice opened the "first specially-designed, free-standing Hospice InPatient Care Center in Branford, Connecticut."¹³ In 1988, Connecticut Hospice opened the Hospice Cottage for homeless patients.

Why name these facilities "hospices"? According to Dr. Saunders, "'the name hospice, 'a resting place for travelers or pilgrims,' was chosen because this will be something between a hospital and a home, with the skills of one and the hospitality, warmth, and time of the other.'"¹

In 1972, the U.S. Senate Special Committee on Aging conducted the first national hearings on the subject of death with dignity. Dr. Elisabeth Kübler-Ross, author of the internationally best-selling book On Death and Dying, testified saying: "We live in a very particular death-denying society. We isolate both the dying and the old, and it serves a purpose. They are reminders of our own mortality. We should not institutionalize people. We can give more help with home care and visiting nurses, giving families and the patients the spiritual, emotional, and financial help in order to facilitate the final care at home." In 1974, the first hospice legislation was introduced in Congress proposing federal funds for hospice programs. The legislation was not enacted.

In 1978, a U.S. Department of Health, Education and Welfare task force reported that "the hospice movement…is a viable concept and one which holds out a means of providing more humane care for Americans dying of terminal illness while possibly reducing costs. As such, it is the proper subject of federal support." The next year, the Health Care Financing Administration (HCFA) set out to assess the cost effectiveness of hospice care and in 1982 developed the daily reimbursement system for the Medicare Hospice Benefit.¹⁴

In 1989, a Government Accounting Office study found that only 35% of eligible hospices were Medicare certified. Why? The low payment rates that HCFA established. That same year, Congress gave hospices their first increase in reimbursements and changed the provisions to provide for yearly increases tied to the yearly increases in hospital reimbursements. By 1993 there were 1,288 Medicare certified hospices compared to 31 in 1984.¹⁵A year later, HCFA, responding to "questionable certifications and recertifications of terminal illnesses," alerted hospices that they will be denied payments if they do not improve their documentation and certification procedures.¹⁶ The conditions of participation and reimbursement in the Medicare Hospice Benefit were rewritten by the HCFA that same year.

From 1976 to 1996, there was a 7,400% increase in the number of hospice patients. But there were still thousands of eligible patients not taking advantage of these services. In 1996, the Robert Wood Johnson Foundation funded a $1.2 million campaign to educate consumers and physicians on end-of-life issues. The Hospice Association of America participated in this campaign. In 2000, 25% of those who died in the U.S., died while receiving hospice care.

The next panel will look at hospice care for Medicare beneficiaries.

Sources: The National Hospice and Palliative Care Organization. "More Patients and Families Choose Hospital Care Each Year." Retrieved September 11, 2002 from http://www.nhpco.org. "The History of Hospice." Retrieved September 11, 2002 from http://www.cp-tel.net/pamnorth/history.htm. National Hospice and Palliative Care Organization. "NHPCO Facts and Figures." Retrieved September 11, 2002 from http://www.nhpco.org. Larry Beresford. National Hospice and Palliative Care Organization and the Center to Advance Palliative Care. Hospital-Hospice Partnerships in Palliative Care. Retrieved September 11, 2002 from http://www.nhpco.org. Hospice of Michigan. "Brief history of the hospice movement." Retrieved September 11, 2002 from http://www.hom.org/move-ment.html. William J. Scanlon. Health, Education, and Human Services Division. United States General Accounting Office. "Medi- care: More Beneficiaries Use Hospice: Many Factors Contribute to Shorter Periods of Use," September 18, 2000. Retrieved September 11, 2002 from http://www.gao.gov/new.items/he00201t.pdf.

2000, it was 48 days. Sources: "The History of Hospice." Retrieved September 11, 2002 from http://www.cp-tel.net/pamnorth/history.htm. National Hospice and Palliative Care Organization. "NHPCO Facts and Figures." Retrieved September 11, 2002 from http://www.nhpco.org.