A Perspective on the End of Life: Hospice Care

Thomas J. Simms, RN, CHPN

Disclosures

Topics in Advanced Practice Nursing eJournal 

In This Article

The Modern Hospice Movement

The advancement of the current model for hospice in the United States is credited to British physician Dame Cicely Saunders, who, in 1963, came to Yale University to lecture on the concept of hospice care to medical, nursing, social work, and chaplaincy students. Her description of how hospice was being provided at St. Christopher's inpatient hospice in London resulted in a series of events leading to the advancement of hospice care as it is today.

In 1969, Dr. Elisabeth Kübler-Ross published her book, On Death and Dying, which contained more than 500 interviews with dying patients. From these interviews, Kübler-Ross identified the 5 stages of dying (denial, anger, bargaining, depression, and acceptance), which many patients experience at the end of life. She also argued for the provision of care in the patient's home rather than in the institutional setting and for allowing patients to participate in making decisions for themselves with respect to choices at the end of life. The book became a world-wide best seller.[2]

Not until 1974 was the first modern hospice in America established in Branford, Connecticut. Through funding provided by the National Cancer Institute (NCI), The Connecticut Hospice, Inc. provided services to terminally ill cancer patients in their homes. By 1980, several other hospice projects had been developed primarily for cancer patients with support of the NCI.

In the late 1970s, the US Department of Health, Education and Welfare established a task force to examine the feasibility of care for the terminally ill under hospice. At the conclusion of this study, the Department determined that the hospice movement should be eligible for federal support.[2]

By 1979, the Centers for Medicare & Medicaid Services (CMS) had initiated demonstration projects at 26 hospices throughout the United States to study their cost-effectiveness and to clarify the definition of hospice care and the services it should provide. Within 3 years, Congress allowed a provision for a Medicare hospice benefit, and in 1985 the benefit became permanent. At the same time, individual states were given the option of including hospice in their Medicaid programs. By this time, there were 158 Medicare-certified hospice programs.

Within 4 years, by 1989, a study was commissioned by the Government Accounting Office that showed that only 35% of eligible hospices were Medicare-certified. The total number of Medicare-certified hospices was 701, and they provided care for 60,802 patients with an average length of stay (ALOS) of 44 days.[2]

Over the next decade, several interpretive refinements to the Medicare Hospice Benefit were made, and by 2001 there were approximately 2283 Medicare-certified hospice agencies that cared for 579,801 patients with an ALOS of 49.9 days at a cost to Medicare of $6228 per patient, well below the Medicare beneficiary cap of $16,650. During this period, hospice services were also expanded to include patients with noncancer terminal illnesses.

The upward trend in the number of hospice programs reflects a better consumer understanding of choice when it comes to end-of-life options and a growing public demand for the availability of hospice as an additional medical option. Data from the National Hospice and Palliative Care Organization (NHPCO), from 1974 to 2004, illustrates the increasing number of hospice programs in the United States (Figure 1).

Growth of hospice programs.

Just as the number of hospice programs has increased, so has the number of patients served, indicated by Figure 2.

Number of hospice patients.

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