Families prefer assisted living over nursing homes for hospice care: survey

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"Our findings may help hospice providers and others to tailor communication based on patient setting,” said the study's leader, Kathleen Unroe, M.D., MHA.
"Our findings may help hospice providers and others to tailor communication based on patient setting,” said the study's leader, Kathleen Unroe, M.D., MHA.

Families perceive hospice care in assisted living as being better than hospice care in a nursing home, according to new research published online ahead of print by the Journal of the American Geriatrics Society.

The study, published Feb. 10, is the first to directly compare perceptions of the quality of routine hospice care for individuals in three settings of care — home, nursing homes and assisted living, according to researchers from Indiana University Center for Aging Research and the Regenstrief Institute. Home hospice care fared the best in the study.

“In addition to providing actionable information to policymakers, clinicians and additional interested parties, our findings may help hospice providers and others to tailor communication based on patient setting,” said the study's leader, Kathleen Unroe, M.D., MHA. “As our population ages and more individuals receive hospice at home, in assisted living facilities and in nursing homes, this is of critical importance.”

Investigators analyzed the results of a federally mandated quality survey called Family Evaluation of Hospice Care for 7,510 hospice patients aged 18 or more years for whom electronic medical records data also were available. All patients received hospice care from one large national hospice care provider that was not named.

The researchers found:

  • 67.8% of family members of those who received care at home reported that hospice care was excellent, versus 64.3% for assisted living and 55.1% for nursing homes. “Concerns about quality of nursing home care and individuals' unhappiness with being in that setting, which serves as a safety net for people who do not have adequate support at home, may be reflected in these responses and thus not be a true measure of perceptions of the quality of hospice care provided,” the authors said. They noted, however, that challenges with coordination-of-care plans and communication between hospice staff members and nursing home staff members could contribute to perceptions of poorer quality of care.
  • Families of nursing home residents were more likely than those of individuals receiving care at home or in assisted living communities to report that they did not receive information on pain medications used or treatments for breathing problems. A perceived absence of information is not surprising, Unroe said, because family members usually have less hands-on roles in nursing homes than in the other two settings studied. Also, it may be difficult for family members to “tease out” what part of the care experience they are unhappy with — routine nursing home care or the actual hospice care, she added.
  • Family caregivers of individuals who died at home were more likely to report that they were not confident in doing what was needed to care for their loved one — 27.9%, versus 16% for assisted living facility residents and 12.4% for nursing home residents. The finding also is not surprising, the researchers said, given that nursing home staff work directly with hospice staff to implement plans of care. Families of assisted living residents may be more involved in the direct care of their loved ones, but family caregivers at home would bear primary responsibility for delivering care, they said.
  • Family members of nursing home residents were less likely to feel that death occurred in the setting of the individual's choice — 81.7%, versus 93.5% for assisted living facility residents and 98.8% for individuals at home.

“[P]otential underlying causes of differences in perceived quality for individuals in different settings of care should be examined,” the researchers said. “Staff generally provide daily care in nursing homes or assisted living facilities, which may distance family members from day-to-day treatment discussions. Hospice providers may need to customize communication strategies based on setting.”

In a previous study, published in March 2017, Unroe and colleagues found that median length of hospice care for assisted living residents is more than twice as long as it is for skilled nursing residents or people receiving care in traditional homes. The difference may be explained in part by differences in diagnoses, they said.

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