My most vivid memory of the hospice facility that housed my mother-in-law after her stroke does not involve the soft lighting, the tranquil environment, or the quietly attentive caregivers. What has stayed with me is the ice cream.
Shirley had stopped eating during her stay in the hospital, a development that persuaded her doctors that the end was near. But shortly after she was settled in her hospice room, one of the nurses mentioned some snack options. Shirley perked up, and I was soon feeding her spoonfuls of the cool and creamy treat.
It was a brief uplifting moment amid a troubling journey, but it wasn’t until I came across a disturbing study last week that I began to realize just how fortunate Shirley had been — despite her precarious condition. Someone suffering from dementia may have received a far less satisfying welcome.
University of Michigan researchers, reviewing the health records of some 139,000 hospice patients diagnosed with dementia, found that nearly half of them were given benzodiazepines, a class of drugs designed to relieve agitation and anxiety. A little more than one in 10 were given antipsychotic medication, commonly prescribed to reduce episodes of delirium. None of the patients had taken the drugs in the six months prior to entering hospice.
The results, in many cases, were deadly. Those who received benzodiazepines, the study notes, were 41 percent more likely to die within six months than dementia patients in hospices who did not take the drug. The antipsychotic medications were associated with a 16 percent increase in mortality.
“Dementia is now the most common qualifying condition among hospice enrollees, yet many of these patients are not imminently dying.”
“Dementia is now the most common qualifying condition among hospice enrollees, yet many of these patients are not imminently dying,” notes geriatric psychiatrist Lauren Gerlach, DO, who led the study. “Because prognosis in dementia is so difficult to determine, nearly one in five patients will outlive the six-month eligibility window for hospice. This makes it critical that medications used during this period enhance, rather than diminish, quality of life.”
The Food and Drug Administration has issued warnings about prescribing benzodiazepines and antipsychotics to dementia patients. The medications have been shown to increase the risks of respiratory issues, sedation, and falls. Yet, Gerlach and her team found that hospice facilities were less likely to base a prescribing decision on a patient’s condition than on general facility guidelines. (Large, for-profit hospice organizations, she notes, were “significantly more likely” to prescribe the drugs.) Writing in JAMA Network Open, she cites a survey that found “40 percent of hospice physicians believed that benzodiazepines were overused.”
Part of the problem lies in the very nature of the hospice model. These facilities, Gerlach explains, were designed for patients who are expected to die within a few days or weeks of their arrival. Dementia sufferers often survive well beyond that horizon; the average length of stay among the patients in her study was over 130 days. This requires a more nuanced approach.
“For patients who are not actively dying, patients and families may prioritize preserving cognition, communication, and function — goals that may be compromised by sedating medications.”
“For patients who are not actively dying, patients and families may prioritize preserving cognition, communication, and function — goals that may be compromised by sedating medications,” she writes. “This further underscores the need for dementia-specific hospice interventions to help offer scalable, nonpharmacologic approaches, to equip hospice clinicians with effective alternatives.”
Gerlach and her team also highlight a couple of policy issues the hospice industry should consider in order to improve its services to dementia patients: medication oversight and Medicare hospice eligibility.
Except for a brief period between 2014 and 2018, when hospice facilities were required to report prescribing data to the federal government, that information has not been available to regulators or researchers. “Right now, hospice prescribing is a black box,” Gerlach notes. “Medications covered under the hospice benefit are not reported to Medicare, so we have almost no visibility to what patients are receiving. That makes it impossible to monitor prescribing safety or quality on a national level.”
Then there’s Medicare’s six-month limit on hospice coverage, which forces about 20 percent of dementia patients out the door, depriving them of the support services they need. “For people with dementia, whose disease course can span years, we need care models and prescribing guidelines that better reflect their experience,” she says.
Despite her physical limitations, my mother-in-law retained her cognitive powers after the stroke and thus was never offered any of the medications routinely prescribed to dementia sufferers. But, like many of those patients, she outlived expectations. She soon moved from the hospice to a nursing home, where she spent the last nine months of her life and ate ice cream as often as she pleased.
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