Only a very small percentage of nursing home residents who would benefit from palliative care typically receive it, according to a new study released Monday by the Journal of the American Medical Association (JAMA).
The researchers, which included representatives from the University of California, San Francisco and the San Francisco Veterans Affairs Medical Center, analyzed 228 skilled nursing residents at three facilities in Northern California between January and May 2015. They determined that 157 were eligible for palliative care, but of that group, exactly none were receiving it — while only 2% were undergoing hospice care.
“Our work suggests that, although most nursing home residents report high symptom burden and are eligible for palliative care services, they are not receiving any formal interdisciplinary palliative care,” the researchers concluded.
The 157 eligible residents had a variety of disorders, with nearly half reporting Alzheimer’s disease or other dementias, along with smaller proportions of cancer, congestive heart failure, and obstructive pulmonary disease. The vast majority, or about 85%, needed extensive or total assistance with three or more activities of daily living, and nearly all had a Physician Order for Life-Sustaining Treatment, or POLST — a detailed document that provides information to doctors about a patient’s treatment goals and wishes.
Still, while those documents are intended to guide a resident’s care team toward the outcomes that each individual desires, including a do-not-resucitate section and information about palliative care measures, the team found that the forms didn’t always translate to firm decisions about care.
“Despite high POLST completion rates, interviews with the resident or family subsample revealed that few actually recalled having an advanced care planning discussion or signing the POLST,” the researchers wrote.
Additionally, the small study revealed a gap between resident satisfaction with end-of-life care and their families’ perceptions. Among the residents who completed a QUAL-E survey, a type of care assessment, 52.9% rated their quality of life as fair to very poor, and 70.6% said that they usually or always experienced adverse symptoms during the previous week; only 64.3% of family members, meanwhile, reported seeing their loved ones with negative symptoms.
“A higher proportion of residents than families also rated symptoms as severe or very severe,” the researchers noted, with a gap of 82.3% to 60.8%, respectively.
Read the full research letter in JAMA Internal Medicine.
Written by Alex Spanko