Families inform roadmap to improve care for dying in nursing homes

December 13, 2004

PROVIDENCE, R.I. -- Nearly one in four adult Americans dies in a nursing home, yet basic needs - for pain medication, emotional support, hospice care - often go unmet, according to a new study conducted by Brown Medical School researchers and published by AARP.

In the report, experts offer several recommendations to improve end-of-life care in nursing homes. One of the most critical: Improve government reimbursement rates.

"Listening to families' compelling stories of end-of-life care, it is clear that nursing homes need more staff and better training for that staff," said Terrie Wetle, associate dean of medicine for public health and public policy and professor of community health at Brown Medical School.

"Workers also need to be better paid," Wetle said. "Even at the best facilities, aides are frequently offered wages that are about what they'd make at McDonald's. But many homes simply don't have the money to provide the level of care and support that the dying need."

The report was published by the AARP Public Policy Institute, which fosters research and analysis on policy issues of importance to mid-life and older Americans. With 22 percent of all U.S. deaths taking place in nursing homes, and with scant research on their experiences, AARP commissioned members of Brown's Center for Gerontology and Health Care Research to gather and analyze data.

"This research represents a rare collaboration of a large-scale survey that documented the extent of problems in providing end-of-life care in nursing homes and in-depth interviews in which surviving family members movingly describe the problems they faced," said John Rother, AARP director of public policy and strategy. "Their stories make a powerful case for changing the way we provide care at the end of life in nursing homes and other care facilities."

The research team included Wetle, Joan Teno, Renee Shield, Lisa Welch and Susan Miller, who conduct research in Brown's Center for Gerontology and Healthcare Research.

To carry out the study, they drew upon a sample of 1,578 people from a previous Brown study of U.S. nursing home deaths funded by the Robert Wood Johnson Foundation. From that sample, 54 people who had a loved one die in a nursing home were interviewed. Relatives were asked about their loved ones' care experiences. Comments were recorded, transcribed and analyzed.

One fundamental finding: Appropriate care often isn't provided because staffers simply don't recognize that a patient is dying. Researchers noted that symptoms of terminal illness are often difficult to identify and illness trajectories hard to predict, resulting in additional care-giving burdens, late decisions about hospice care, and unnecessary transfers to other facilities. The team also found that dying residents were subjected to unneeded tests or treatments - for example, a comatose resident was restrained in a wheelchair and put in whirlpool bath.

The team heard other consistent themes: Doctors that were "missing in action"; aides that were overworked and undertrained; care that was task-focused rather than person-centered; hospice referrals that were made too late or not at all; and, due to a lack of trust, family members who became vigilant advocates for their spouses, parents or grandparents.

"People felt that they had to be assertive to make sure that their loved one ate, had their bedding changed, were brought to the bathroom or received the right medication," said Shield, a clinical associate professor of community health. "Family members shouldn't have to have an adversarial relationship with staff members for basic care."

Family members also made positive comments about care, praising attentive aides or compassionate gestures, despite the often inadequate supplies, wages and staffing. "Many people said that nursing homes were better places to die than hospitals," said Miller. "Residents were known by name. The setting is comfortable."

To improve end-of-life care in nursing homes, the team made 15 recommendations, including:
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