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Study: When Death Looms, Nursing Homes Fall Short

Patients aren't getting the pain-free, end-of-life care they want

MONDAY, Dec. 2, 2002 (HealthDayNews) -- Most nursing homes in the United States can't make the transition from rehabilitating elderly patients to preparing them for death, says a new study.

The difficulty stems partly from over-regulation of nursing homes, partly from their lack of resources and funding, and partly from America's reluctance to accept death, according to a report in a recent issue of the Journal of Palliative Care.

"We're a death-denying culture. It's the one thing that's going to happen to each of us and yet no one wants to talk about it," says study author Debra Parker-Oliver, an assistant professor of social work at the University of Missouri.

As a result, doctors and nurses often fail to make the integral shift in care from trying to get people well to providing them comfort and support in the last months of their lives. This occurs even after a string of recent studies have concluded that Americans want to die at home, surrounded by family and friends, and without pain, Parker-Oliver says.

"The philosophy and goals of rehabilitation are often in direct conflict with the needs of dying people," Parker-Oliver says. "Nursing homes don't think to change their goals of care when patients reach that threshold. So, Americans are saying they want one thing while medicine is giving them something else."

Such concerns about end-of-life care are becoming increasingly important as more and more people die in nursing homes. One-quarter of Americans die in nursing homes, one-quarter at home and half in hospitals. However, 40 percent of deaths will occur in nursing homes by 2020, Brown University researchers found in a study two years ago.

While a third of patients admitted to nursing homes die within their first year there, less than 5 percent of them get hospice care when they die, Parker-Oliver says.

Unlike most nursing homes, hospices approach the end of a patient's life with teams of nurses, social workers and chaplains to resolve common end-of-life issues, such as family conflicts, loneliness, support for grieving caregivers and spiritual questions. Hospices are more willing than nursing homes to give patients enough pain medication to make their last days, weeks and months pain-free, Parker-Oliver says.

In her study, Parker-Oliver interviewed 69 health-care professionals at 24 hospice programs in Missouri. In critical areas, such as assessing and managing a person's end-of-life pain and communicating about changing care goals, hospice workers said nursing homes failed to meet the patient's needs.

In her prior survey, though, nursing home workers blamed the problem on doctors, Parker-Oliver says.

"Physicians are oriented toward cures," she says. "They're afraid to give bad news. And quite frankly, I think doctors can have trouble identifying when a person is dying."

Others argue that it isn't a lack of knowledge about the kind of care a person should get at the end of his or her life, but whether poorly funded nursing homes have the resources to shift strategies at the right time.

"The problem with a nursing home is that they don't have enough resources and skills to pull it off. They're just able to do what they can do, and making the changes necessary for the end of life is very difficult," says Dr. Michael Preodor, president of the nonprofit Horizon Hospice in Chicago.

An even greater culprit is the rigid set of regulations placed on nursing homes. Such rules were initially established to protect the elderly from poor care, but the rules have crippled the industry, Preodor says.

As recently as a decade ago, nursing homes, fearing lawsuits, sent all patients to die in hospitals. Major medical advances have been made since then, Preodor says, but the nursing home industry and regulators have a long way to go in accepting that patients need different care before death.

"Right now the regulation is overwhelming. Nursing homes fear that a regulatory agency will criticize them if they don't make every effort possible to rehabilitate patients," Preodor says.

Parker-Oliver agrees.

"Nursing homes are the most regulated industry in the country, surpassing recently nuclear power, and yet they're a terrible place to die," she says. "All of the regulatory focus is on rehabilitating these older people, and ignoring the fact that many of them are going to die."

Bruce Rosenthal is a spokesman for the American Association of Homes and Services for the Aging, which represents 1,700 nursing homes in the United States.

He says nursing home organizations aren't shying away from their responsibility to those nearing death. "There is definitely a role for hospice care in nursing homes," he says.

Commenting on Parker-Oliver's study, Rosenthal agrees that improving end-of-life care is primarily the responsibility of nursing homes. To that end, the association has recently focused on improving pain assessment and management, using new federal standards and its own "quality first" guidelines.

And while he thinks excessive government regulation has stymied some efforts by nursing homes, he says industry authorities are getting closer to agreeing on standards about when rehabilitative care should be replaced with end-of-life care for patients.

"I think it's great to have this national dialogue about care for the dying. It's important," Rosenthal says.

What To Do

To learn how your state fares in end-of-life care, check this report card by the Robert Wood Johnson Foundation. Or for more resources about aging, visit the U.S. Administration on Aging.

SOURCES: Debra Parker-Oliver, Ph.D., assistant professor, social work, University of Missouri; Michael Preodor, M.D., president and founding medical director, Horizon Hospice, Chicago; Bruce Rosenthal, director of media relations for the American Association of Homes and Services for the Aging, Washington, D.C.; November 2002 Journal of Palliative Care
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