resident is competent to participate in decisions, and how to handle disagreements. The spiritual dimensions of caring may be neglected.

These issues are more systems rather than individual issues, and they need attention at the systems level. Moreover, "an informed corporate conscience" is needed (Parkin, 1996). Ethics committees are helpful, but more than ethical problems are involved.

Home Care

Home Care with Hospice

In the United States, hospice care is usually intended to help people die comfortably at home, although inpatient care and inpatient hospice programs have a role (see generally, Zimmerman, 1986; Mor, 1987; Buckingham, 1996). Hospice-like services and palliative care may be provided by a wide variety of organizations—hospitals, nursing homes, physician groups, HMOs—that are not officially certified. Some do not designate themselves as hospices. Most care for adults, especially cancer patients. A few programs, often associated with inpatient pediatric services, focus on specialized care for dying children, a small but clinically and psychosocially complex group (Martinson, 1978; Howell, 1993; Wass and Neimeyer, 1995; Buckingham, 1996).

In 1996, the National Center for Health Statistics (NCHS) estimated that there were about 1,100 hospices (Singh et al., 1996). For 1994, the Health Care Financing Association reported 1,682 Medicare-certified U.S. hospices. The National Hospice Organization (NHO, 1996a) reports that it "has knowledge of" 2,800 operational or planned hospices (2,200 are members of the NHO). The higher numbers include hospice units that are part of hospitals, nursing homes, and home health agencies. Hospices may be independent organizations (about 30 percent according to NHO, 1996a) or may be organizationally affiliated with home care agencies (22 percent), hospitals (28 percent), or larger integrated health systems. Ninety percent of hospices are owned by not-for-profit organizations, but ownership by for-profit organizations is growing (from about 3 percent in 1992 to 7 percent in 1996) (Singh et al., 1996).

Hospices—as organizations concerned exclusively with dying patients and those close to them—are intended to provide workable and reliable structures and procedures for turning palliative care principles into practice. For example, hospices should back up their commitment to "be there" for patients by

  • being accessible to patients and families 24 hours a day, 7 days a


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