A US survey evaluates the experience of dying at home versus in institutional settings. Family members or other informants were interviewed about the patient's experience at the last place of care where the patient spent more than 48 hours. Last place of care was an institution for more than two-thirds of respondents and at home for one-third. Among all respondents, more than one-quarter of patients with pain or dyspnea (difficulty breathing) did not receive adequate care, and more than one-third received inadequate emotional support. Nursing home patients were less likely than those in other settings to have been treated with respect at end of life. Family members of decedents using home hospice services were more satisfied with overall quality of care. The study concludes that many people dying in institutions have unmet needs for symptom relief, communication, emotional support and for being treated with respect.

Background: Over the past century, nursing homes and hospitals have become the site of death, yet national studies have not examined the adequacy of the quality of end-of-life care in institutional settings compared with dying at home. This US study evaluates the experience of dying in the home as opposed to institutional settings.

Methods: From records of 1.9 million deaths in the US in 2000, a sample of 3275 was drawn from a sample of 22 states. Family members or other knowledgeable informants of the deceased were interviewed by telephone. This resulted in 1578 completed interviews, yielding a 58% response rate. The majority of interviews (72%) were conducted between 9 and 15 months after the patient had died. Outcome measures included whether: (1) health care workers provided physical comfort and emotional support, (2) shared decision making was supported, (3) the dying person was treated with respect, (4) emotional needs of the family were attended to, and (5) care was coordinated. Factors that were adjusted for in the analysis included: the decedent's age, years of education, sex, race, the underlying cause of death, respondent's perceptions of whether death was unexpected, and whether the decedent had difficulty rising from bed or chair 90 days prior to death.

Findings: The site of death and the last place of care were the same for 92% of cases. For the majority (69%), the last place of care was an institutional setting, either hospital or nursing home. For 31%, home was the last place of care. Over one-third of these (36%) died without any nursing services, 12% had home nursing services and 52% had home hospice services. Unmarried women were more likely to die in a nursing home. Cancer patients were more likely to have hospice services. Persons without home services were more likely to have died from heart disease. Most respondents (72%) either spoke with or saw the patient for all 7 days prior to death. Family perceptions of quality of care differed by the last place of care in which the decedents received formal services. Nearly one-quarter of respondents reported that the patient did not receive enough help with pain or dyspnea (difficulty breathing). Unmet needs for dyspnea did not differ by setting. Family members of patients whose last place of care was a nursing home or home with nursing services were 1.6 times more likely to report unmet needs for pain compared to those with home hospice services. Overall, half of family members reported that the patient did not receive enough emotional support. Home hospice care had lower rates of unmet needs (34%) compared to other settings. About one-quarter of families had concerns with physician communication and there was no difference by setting. Families reported 2.6 to 3.0 times more concerns about the patient not being treated with respect when the place of care was a nursing home, hospital, or home with nursing services as compared to a home with hospice services. Overall, satisfaction with care was better with home hospice services (70% rating care as excellent) versus other settings of care (less than 50% rating care as excellent) .

Conclusions: The study concludes that many people dying in institutions have unmet needs for symptom relief, communication, emotional support and being treated with respect. Home hospice care was the best mode of care for addressing these unmet needs. In addition, home hospice care generated the highest satisfaction ratings among family members of the deceased. These results support recent initiatives by governments in Canada to expand home hospice/palliative care services.

Reference: Teno J, Clarridge B, Casey V, Welch L, Wetle T, Shield R, Mor V. "Family Perspectives of End-of-Life Care at the Last Place of Care". Journal of the American Medical Association, January 2004; 29 (1), 88-93.

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