Public Release: 

Family members say dying patients need better end-of-life emotional and medical support

The JAMA Network Journals

Many people dying in hospitals or nursing homes have unmet needs for pain relief, physician communication, emotional support, and being treated with respect, according to a study in the January 7 issue of The Journal of the American Medical Association (JAMA).

According to background information in the article, the majority of deaths in industrialized countries occur in health care institutions. "With recent changes in health care, society is struggling with the role that governmental and nongovernmental regulatory structures should play in assuring that the health care system provides competent, coordinated, and compassionate care at life's end," the authors write.

Joan M. Teno, M.D., M.S., from Brown Medical School, Providence, R.I., and colleagues reviewed data provided by family members, or others who had been close to the patient, representing 1,578 people who died. This information from a probability sample of individuals who died in the U.S. in 2000 was used to estimate end-of-life care outcomes for 1.97 million deaths from chronic illness. The respondents were asked about the quality of care at the last place the patient spent at least 48 hours.

"For the majority (68.9 percent), the last place of care was an institutional setting, either a hospital or nursing home," the authors report in their findings. "Home was the last place of care for 31.1 percent; of those, 36.1 percent died without any nursing services, 12.4 percent had home nursing services, and 51.5 percent had home hospice services." The authors write that family perceptions of quality of care differed by the last place of care for the patient. "Nearly one-fourth of all respondents reported that the patient did not receive any or enough help with pain (24.2 percent) or dyspnea [difficulty breathing] (22.4 percent). Family members of persons whose last place of care was a nursing home or home with home health nursing services had a higher rate of reported unmet needs for pain compared with those persons with home hospice services. Unmet needs for dyspnea did not differ by setting of care. Overall, half of family members reported that the patient did not receive enough emotional support." And the authors note that about one in four families reported concerns with physician communication regarding medical decision making. "Families reported more concerns with whether the patient was always treated with respect when the last place of care was a nursing home, hospital, or home with home health services, compared with persons who died at home with hospice services." The authors note that family members of patients receiving hospice services were more satisfied with overall quality of care: 70.7 percent rate care as "excellent" compared with less than 50 percent for the other settings of care.

"Key findings of our study are that bereaved family members reported high rates of unmet needs for symptom management, concerns with physician communication about medical decision making, a lack of emotional support for themselves, and a belief that their dying family member was not always treated with respect," the authors state. "A higher rate of concerns with the quality of end-of-life care was reported for persons whose last place of care was a nursing home or hospital."

"Bereaved family members voiced significant concerns with the quality of end-of-life care, regardless of whether care was provided in a nursing home or hospital. Only bereaved family members whose loved one received home hospice services reported higher satisfaction and fewer unmet needs. However, simply increasing access to hospice services may not adequately improve end-of-life care in the United States, ... Rather, our results call for a public health approach that uses sustained and multifaceted interventions to improve end-of-life care in the United States."


(JAMA. 2004;291:88-93. Available post-embargo at

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