U.S. study of death in institutions.

BOSTON -- Many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect, according to a report in the Journal of the American Medical Association. Family members of decedents who received care at home with hospice services were more likely to report a favorable dying experience.

The study, Family Perspectives on End-of-Life Care at the Last Place of Care, was undertaken in recognition that "over the past century, nursing homes and hospitals increasingly have become the site of death, yet no national studies have examined the adequacy or quality of end-of-life care in institutional settings compared with deaths at home."

The researchers interviewed family members or other knowledgeable informants, using a sample representing 1.97 million deaths from chronic illness in the United States in 2000. Informants were asked about the patient's experience at the last place of care.

These were the results. For 1059 of 1578 decedents (67.1%), the last place of care was an institution. Of 519 (32.9%) patients dying at home represented by this sample, 198 (38.2%) did not receive nursing services; 65 (12.5%) had home nursing services, and 256 (49.3%) had home hospice services.

About one quarter of all patients with pain or dyspnea did not receive adequate treatment, and one quarter reported concerns with physician communication. More than one third of respondents cared for by a home health agency, nursing home, or hospital reported insufficient emotional support for the patient and/or one or more concerns with family emotional support, compared with about one fifth of those receiving home hospice services. Nursing home residents were less likely than those cared for in a hospital or by home hospice services to always have been treated with respect at the end of life (68.2% vs 79.6% and 96.2%, respectively).

Family members of patients receiving hospice services were more satisfied with overall quality of care: 70.7% rated care as "excellent" compared with less than 50% of those dying in an institutional setting or with home health services.