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End-of-Life Care in U.S. Found Lacking

The dying need more respect, support and pain relief, study says

TUESDAY, Jan. 6, 2004 (HealthDayNews) -- The United States does a poor job when it comes to providing quality care to people at the end of their lives.

That's the conclusion of a study in the Jan. 7 issue of the Journal of the American Medical Association. Researchers found less than 50 percent of the relatives of people who died in an institutional setting would rate the care given to their loved ones as "excellent."

That fact is particularly important because the study also found that nearly 70 percent died in an institutional setting, such as a hospital or a nursing home, compared to about 31 percent who passed away at home. However, family members gave high marks to hospice care offered to loved ones nearing death.

"There have been very important strides made in end-of-life care in the United States," says study author Dr. Joan Teno, a professor of community health and medicine at Brown Medical School in Rhode Island. "But we need sustained and multifaceted interventions over time if we're going to provide quality end-of-life care to [the baby boom] population."

Teno and her colleagues interviewed family members or close friends of 1,578 people from 22 different U.S. states who died in 2000. The researchers asked about the last 48 hours of life -- where they were spent and how the dying person was treated.

More than two of three people -- 68.9 percent -- died in an institutional setting. Of those who died at home, more than a third died without any nursing services. Slightly more than 50 percent of those who died at home had home hospice services, and just over 12 percent had home nursing care.

Almost a fourth of all the respondents said their loved ones died in pain. More family members of those who died in nursing homes or with home nursing care reported insufficient pain control, compared to those under hospice care.

"One in four in pain is not acceptable," says Dr. Michel Dubois, director of the NYU Pain Management Center at New York University Medical Center. "We have ways to alleviate pain. Dying patients should not be in pain."

Half of those surveyed said the dying person did not receive enough emotional support, either.

Twenty-five percent reported concerns about communication between the physician and the patient and family members. The number reporting this problem didn't change whether the person died at home or in an institutional setting.

Loved ones of people who died in nursing homes, hospitals or with home nursing services expressed more concern about the dying person being treated with respect than did loved ones of those under hospice care.

Overall, 70 percent of those with loved ones under hospice care reported the end-of-life care as excellent, while less than half of those with loved ones in hospitals or nursing homes felt the same.

What's encouraging about this study, says Dubois, is "that hospice seemed to make a big difference."

Teno says access to hospice services needs to be expanded. One easy way to do this, she notes, would be for Medicare to give nursing homes the same financial incentive for providing hospice care as they get for providing skilled services such as rehabilitation. Currently, she says, nursing homes receive nearly twice as much money for providing skilled services as they do for providing services for the dying.

"About 40 percent of people will be dying in nursing homes," explains Teno, who says nursing homes are one of the weakest links in the U.S. health-care system.

"There's a paradox in the system. Technology is readily available. I can easily order an MRI [magnetic resonance imaging scan], but I can't ensure that staff is available to turn my patients to prevent bedsores," says Teno.

Until some major changes occur, Teno recommends that anyone who is seriously ill have a family member or close friend act as an advocate to demand good care. "You can't be your own advocate when you're ill. It's important to have someone looking out for you."

More information

To learn more about hospice care, visit the Hospice Foundation of America or the National Hospice and Palliative Care Organization.

SOURCES: Joan Teno, M.D., professor, community health and medicine, Brown Medical School, Providence, R.I.; Michel Dubois, M.D., director, NYU Pain Management Center, New York University Medical Center, and professor, anesthesiology, New York University School of Medicine, New York City; Jan. 7, 2004, Journal of the American Medical Association
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