Context 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
Objective To evaluate the US dying experience at home and in institutional settings.
Design, Setting, and Participants Mortality follow-back survey of family members or other knowledgeable
informants representing 1578 decedents, with a 2-stage probability sample
used to estimate end-of-life care outcomes for 1.97 million deaths from chronic
illness in the United States in 2000. Informants were asked via telephone
about the patient's experience at the last place of care at which the patient
spent more than 48 hours.
Main Outcome Measures Patient- and family-centered end-of-life care outcomes, including whether
health care workers (1) provided the desired physical comfort and emotional
support to the dying person, (2) supported shared decision making, (3) treated
the dying person with respect, (4) attended to the emotional needs of the
family, and (5) provided coordinated care.
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 1 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 (P<.001).
Conclusions Many people dying in institutions have unmet needs for symptom amelioration,
physician communication, emotional support, and being treated with respect.
Family members of decedents who received care at home with hospice services
were more likely to report a favorable dying experience.