Dying Americans are receiving "woefully inadequate" care, especially if their final days are spent in nursing homes and hospitals, according to a study published today in the Journal of the American Medical Association.
In the first national study to examine end-of-life care in different settings, researchers found those who were dying didn't receive enough pain medication or emotional support, were often not treated with respect, and lacked communication with physicians.
"While improvements have been made in the care of the dying, the results of this survey attest to the continued need to improve the quality of care," said Dr. Joan Teno, lead author of the study and a professor of Community Health and Medicine at Brown University Medical School.
"Given the burgeoning population of baby boomers soon reaching retirement age, the need for reform is urgent," she said.
Researchers talked to the descendents of 1,578 people who died in 22 states. Most died in nursing homes or hospitals.
Family members were most satisfied with the care their loved ones received when they died at home with help from hospice.
About 70 percent rated hospice care as excellent, while less than half gave the same marks to other settings.
The study found that:
A quarter of those who died did not receive enough pain medicine and sometimes received none, with family members reporting a higher incidence of inadequate pain management in nursing homes.
Half the patients did not receive adequate emotional support, said family members, who also said they didn't get the support they needed.
The dying patient was less likely to be treated with respect in nursing homes and hospitals than at home, said families.
Health care providers didn't know enough about the patient's medical history to provide optimum care, according to 15 percent of family members.
"Our findings demonstrate woefully inadequate care for both dying persons and their families," said Fox Wetle, who is co-author of the study and associate dean for public health at Brown University Medical School.
"There is an urgent need for public policy."
Staffing shortages and lack of funding at nursing homes contribute to the deficiencies in care noticed by study participants -- problems that should be addressed by Congress, the authors say.
"Blaming the nursing-home industry is not the answer," Teno said.
The authors also suggest more timely referrals to hospice and training more physicians to specialize in care for the terminally ill.
The health care system is not organized to provide the best care for dying patients, according to Dr. Gordon Rubenfeld, associate professor of medicine at the University of Washington and co-editor of "Managing Death in the ICU: The Transition From Cure to Comfort" (Oxford University Press, 2000).
High-quality care requires skills and time that many doctors do not have.
"We don't pay doctors to spend hours and hours communicating with families," Rubenfeld said.
"We pay them to do procedures."
The study was funded with a grant from the Robert Wood Johnson Foundation.
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