Research indicates that health professionals ensure high-quality end-of-life care when the following objectives are achieved: desired physical comfort and emotional support are provided; shared decision-making is promoted; the dying person is treated with respect; information and emotional support are provided to family members; and care is coordinated across settings. Teno and colleagues assessed whether, in applying these domains, family members’ perceptions of the quality of end-of-life care differs by last place of care.
The researchers identified 335 informants traced through death certificate information who could be interviewed about the circumstances of a decedent’s death and the dying experience. Respondents were asked about the quality of care at the last place where the patient spent at least 48 hours. Outcome measures included several domains: physical and emotional support, specifically regarding pain and its attendant manifestations; physician communication; and respect.
For the remaining three domains, a count was made of the number of quality-of-care concerns that were identified by the respondents. For the majority of respondents (68.9 percent), the site of death and the last place of care was an institutional setting—a hospital or nursing home. For 31.1 percent, home was the last place of care, with approximately one half of these (51.5 percent) receiving home hospice services, 36.1 percent receiving no nursing services, and 12.4 percent receiving home nursing services. Of the 24.2 percent of patients who did not receive enough help with pain, more had unmet pain needs if they were in a nursing home or at home with nursing services, although unmet needs with regard to dyspnea were the same in all settings.
One half of families reported that the patient did not receive enough emotional support, although unmet needs were fewer with hospice home care than in other settings. One quarter of families had concerns about physician communication, and more concerns about respect were reported when the last place of care was a nursing home or hospital or the patient’s home with health services than with those dying at home with hospice services. Families had fewer concerns about the emotional support provided to them when the patient died at home with hospice services, and overall satisfaction was greater with hospice services, which were rated as “excellent” by 70.7 percent of reporting families, as opposed to less than 50 percent for other settings.
The authors conclude that home hospice care, while by no means fully satisfactory, is associated with higher quality end-of-life care than either hospitals or nursing homes. One limitation of these findings is that the last place of care generally is self-selected, possibly introducing bias into the findings. This study is particularly important because it sampled families from 22 states and therefore represents a national spectrum. The study results suggest a need for coordinated improvement of end-of-life care, regardless of location.