inadequate standards of care and lack of accountability in caring for dying patients;
disparities in care, even when available, for African Americans and other ethnic and socioeconomic segments of the population;
lack of information resources for the public dealing with palliative and end-of-life care;
lack of reliable data on the quality of life and the quality of care of patients dying from cancer (as well as other chronic diseases); and
low level of public sector investment in palliative and end-of-life care research and training.
A major barrier to adequate palliative care has been the institutionalization of a system that focuses on either active therapy or palliative or hospice care and does not allow the appropriate interface between these two approaches. Lynn and O’Mara (Chapter 2) describe the ways in which this split is reinforced by the rules governing hospice care under the Medicare program, the largest payer of care for dying Americans. In addition, Holland and Chertkov (Chapter 7) describe the lack of attention to psychosocial, existential, and spiritual needs even when palliative care is available, and Payne (Chapter 5) describes the unequal access and even poorer treatment often afforded African Americans and other special population groups.
Hospice is the most substantial innovation to serve dying Americans, and for most, it is paid for by the Medicare hospice benefit (using a per diem rate), which was created in 1982. Hospice services—which are predominantly home based—include many elements that are not typically part of Medicare coverage (e.g., an interdisciplinary team, care planning, personal care nursing, family and patient teaching and support, chaplaincy, medication [with a small copayment], medical equipment and supplies, counseling, symptomatic treatment, bereavement support). However, Medicare allows hospice enrollment only for patients with a “prognosis of less than six months” and it is only with difficulty that hospices deal with documentation requirements for longer stays. These requirements ensure that hospice enrollment is seen as a decision to pursue a death-accepting course, which is an obvious deterrent for many patients. Furthermore, hospices are prohibited from offering any of their services to patients who are not formally enrolled, but who might benefit from some aspects of hospice care.
In recent years, more than 60 percent of patients who have enrolled in the Medicare hospice benefit have had cancer, and more than half of all dying cancer patients have used some hospice services (Hogan et al., 2000). The creation of the Medicare benefit was a major step forward, but its strict