Black, Hispanic patients with dementia more likely to be disenrolled from hospice
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New study findings “should raise concerns” that patients with dementia who are Black or Hispanic may be receiving lower-quality hospice care than their white counterparts, according to researchers.
The findings were presented during the virtual American Geriatrics Society Annual Scientific Meeting.
Lauren Hunt, PhD, RN, FNP, an assistant professor of physiological nursing at the University of California, San Francisco, Christine Richie MD, MSPH, a geriatrician and palliative care specialist with Massachusetts General Hospital, and colleagues reported that patients with dementia are up to four times more likely than patients without dementia to be disenrolled from hospice.
“As a hospice nurse, I saw many of my patients with dementia experience disenrollment, primarily because hospice is set up for people with a predictable trajectory at end of life, but people with dementia have a very uncertain trajectory and prognosis,” Hunt told Healio Primary Care. “People refer to hospice disenrollment as ‘graduating,’ but to me, it seemed more like getting expelled. It deprived my patients of the comprehensive services that hospice provides when there really are no other similar services available.”
Hunt and colleagues conducted a retrospective cohort study to learn more about risk factors for hospice disenrollment among people with dementia at the national level. The researchers analyzed Medicare claims and beneficiary data derived from the Hospice Provider of Service files, Hospice Compare, Dartmouth Atlas and the Area Deprivation Index. The analysis included 889,787 beneficiaries (mean age 85.6 years; 66% women) with Alzheimer’s disease or related dementia who were admitted to hospice between July 1, 2013, and December 31, 2016.
After 1 year of the initial hospice admission, the researchers said 15% of participants were disenrolled from hospice, and 9% were still patients. Patient-level factors associated with hospice disenrollment were being Black (OR = 1.63; 95% CI, 1.56-1.7) or Hispanic (OR = 1.61; 95% CI, 1.58- 1.64), and hospice-level factors included smaller size (OR = 1.48; 95% CI, 1.46-1.51) and for-profit ownership (OR = 1.26; 95% CI, 1.24-1.27).
The researchers observed “wide regional variation” in disenrollment rates, which ranged from 10% to 30% across hospital referral regions. The highest rates occurred in the East South Central and Pacific regions.
Hunt said there are several potential reasons why Black and Hispanic patients were more likely to be disenrolled from hospice. One reason could be that these patients might be receiving care from hospice programs that have “concerning quality issues.” However, she noted previous research has shown that even when Black and Hispanic patients are receiving care at the same hospice programs as white patients, they are still more likely to be disenrolled from care.
“This points to growing concerns that hospice care is not adapted to the needs of Black, Hispanic and other patients from racial/ethnic minority groups,” she said. “For example, hospice providers may not communicate or educate in ways that are adapted to the language, culture or education level of people from racial/ethnic minority groups. If English is a second language, a caregiver might not understand materials in English that instruct them to call hospice instead of 911 in case of emergency, resulting in hospice disenrollment when the patient is admitted to the hospital.”
Hunt said that future research efforts will focus on the reasons behind these disparities.
She encouraged primary care providers to advocate at the policy level for patients with dementia and their caregivers, as well as to frequently evaluate their patients with dementia for hospice eligibility or to see if home-based palliative care programs are appropriate.
“When it comes to choosing hospice providers, I would recommend hospices that are well established, as these tend to have lower rates of disenrollment,” Hunt said. “Make sure that you continue to follow-up on your patient once they enroll in hospice, so that they can have more continuity in their care in case of disenrollment.”