Hospice

In 2001, NHPCO estimated that there were "3,139 operational or planned hospice programs in the U.S. . . .including the District of Columbia, Puerto Rico, and Guam" (NHPCO, p. 1). Just under half of the operational programs in 1999 were independent freestanding agencies (44 percent), followed by hospital-based (33 percent), and home health agency-based (17 percent). Figure 1 summarizes the growth in hospice programs since 1974.

In 1999, an estimated 700,000 patients were admitted to hospice and 600,000 died while receiving hospice care. Hospices provided care to 29 percent of Americans who died in 1999. "For those who were served by hospice care, 78 percent were able to die at home or under hospice care in a nursing home" (NHPCO, p. 1). Figure 2 summarizes the growth in hospice admissions from 1985 to 1999.

During the early years of the hospice movement, there were only a handful of inpatient hospice units in the United States. This was in contrast to the model of hospice inpatient care that emerged in England under the leadership of Dame Cicely Saunders, who opened Saint Christopher's Hospice in 1967. Individuals who are cared for in hospice inpatient units may be there because their family caregivers are not able to provide the needed care at home, or because they are experiencing uncontrolled symptoms and need a higher level of skilled care than can be provided in the home.

Trained volunteers, clergy, and health care providers from a variety of disciplines (e.g., medicine; nursing; occupational, physical, and speech therapy; social work) make up the hospice interdisciplinary team. This team develops, and continually updates, the care plan in collaboration with the patient's primary physician. Care Figure 2 More Patients and Families Choose Hospice Care Each Year SOURCE: National Hospice and Palliative Care Organization website (www.nhpco.org) plans include both terminally ill persons and their families. The majority of hospice care is provided in nonhospital settings by registered nurses and home health aides.

When a terminally ill person is being cared for in a home environment, hospice nurses make routine home visits to evaluate the effectiveness of the care plan, to recommend to the primary physician what medication changes are needed in order to better control symptoms, and to support the family caregiver. Home health aides provide personal care when the person's condition warrants it, or when the family caregiver is unable to assume this responsibility seven days a week. Other members of the interdisciplinary team, such as social workers, make home visits as appropriate.

"Considered to be the model of quality, compassionate care at the end of life, hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes" (NHF, p. 1). The team pays particular attention to symptom management, including working aggressively to lessen pain at the end of life. Although the management of pain remains a challenge, in the early years of the hospice movement team members experienced considerable resistance because of fears of addiction and hastening death, as well as the general lack of knowledge about pharmacological and nonpharmacological interventions for pain.

Under the Medicare benefit, hospices have to include a volunteer component within their service package (e.g., persons to run errands, pick up medications, sit with the patient), which recognizes the important role that volunteers can play in supporting dying persons and their family caregivers. Medicare-certified hospices also provide bereavement support following a death, although the benefit does not include financial reimbursement for bereavement services.

The family as the unit of care is also an important component of hospice care. The interdisciplinary team works closely with family caregivers to assure that they have the knowledge and skills to care for their dying family members, and that they have access to the team's expertise twenty-four hours a day, seven days a week. As the dying person's disease progresses and care needs increase, the burden of care can, at times, be overwhelming to family caregivers. In some situations, it does become necessary to admit the dying person to an inpatient facility in order to better manage problematic symptoms and/or provide the family caregiver with relief from caregiving responsibilities.

The majority of hospice patients are elderly persons who have been diagnosed with cancer. NHPCO estimates that "hospices now care for over half of all Americans who die from cancer, and a growing number of patients with other chronic, life-threatening illness, such as end-stage heart and lung disease" (2001, p. 1). It is important to note that hospices provide care across the age continuum and that specialized hospice programs for children have been developing in more urban areas of the United States.