Race, Ethnicity, and Other Risks for Live Discharge Among Hospice Patients with Dementia

Abstract

OBJECTIVES The end‐of‐life trajectory for persons with dementia is often protracted and difficult to predict, placing these individuals at heightened risk of live discharge from hospice. Risks for live discharge due to condition stabilization or failure to decline among patients with dementia are not well established. Our aim was to identify demographic, health, and hospice service factors associated with live discharge due to condition stabilization or failure to decline among hospice patients with dementia. DESIGN Retrospective cohort study. SETTING A large not‐for‐profit agency in New York City. PARTICIPANTS A total of 2629 hospice patients with dementia age 65 years and older. MEASUREMENTS Primary outcome was live discharge from hospice due to condition stabilization or failure to decline (vs death). Measures include demographic factors (race/ethnicity, Medicaid, sex, age, marital status, parental status), health characteristics (primary dementia diagnosis, comorbidities, functional status, prior hospitalization), and hospice service (location, length of service, number and timing of nurse visits). RESULTS Logistic regression models indicated that compared with white hospice patients with dementia, African American and Hispanic hospice patients with dementia experienced increased risk of live discharge (African American: adjusted odds ratio [aOR] = 2.42; 95% confidence interval [CI] = 1.34‐4.38; Hispanic: aOR = 2.99; 95% CI = 1.81‐4.94). Home hospice (aOR = 7.57; 95% CI = 4.04‐14.18), longer length of service (aOR = 1.04; 95% CI = 1.04‐1.05), and more days between nurse visits and discharge (aOR = 1.86; 95% CI = 1.56‐2.21) were also associated with live discharge. CONCLUSION To avoid burdensome and disruptive transitions out of hospice in patients with dementia, interventions to reduce live discharge due to condition stabilization or failure to decline should be tailored to meet the needs of African American, Hispanic, and home hospice patients. Policies regarding sustained hospice eligibility should account for the variable and protracted end‐of‐life trajectory of patients with dementia. J Am Geriatr Soc 68:551–558, 2020

Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature

“…16 Another recent study documented that compared with non-Hispanic White hospice patients with dementia, non-Hispanic Blacks patients with dementia experienced increased risk of live discharge. 177 A qualitative study conducted with non-Hispanic Black patients and lay caregivers receiving hospice care services found additional barriers to hospice enrollment, including 1) inconsistent health care access associated with economic enabling factors; 2) poor communication with providers and perceived experiences of discrimination by the health care system; 3) the bureaucratic difficulty of receiving reimbursement under the Medicare hospice benefit; and 4) the perception that hospice care is a way to abdicate responsibilities or to hasten a person's death. 74 An interesting qualitative study that examined the knowledge, beliefs and attitudes of non-Hispanic Black and White home health clients who were eligible for but refused to enroll in hospice care, found very similar perspectives among both racial groups with regard to attitudes about end-of-life care.…”

“… 16 Another recent study documented that compared with non-Hispanic White hospice patients with dementia, non-Hispanic Blacks patients with dementia experienced increased risk of live discharge. 177 …”

Disparities and Racism Experienced Among Older African Americans Nearing End of Life

“…Provider communication is key to engaging older African Americans and their caregivers in EOL conversations. When racist perceptions or even stereotypical thoughts impact the communication process, there is increased risk for miscommunication and breakdown of the process [ 42 ].…”

“…A study with a cohort of 1212 individuals from the Reasons for Geographic and Racial Difference in Stroke (REGARDS 2003-2007) dataset showed that Blacks were more likely to continue treatment at the EOL and less hospice usage than their White counterparts [41]. For older adults with dementia and the likelihood of live discharge from hospice, two studies found that African Americans weresignificantly more likely to experience a live discharge from hospice than Whites; some of these discharges occurred following acute hospitalizations [42,43]. These findings signify that African Americans experience arduous disruptions in care at EOL resulting in a higher likelihood of them not being able to benefit from these services due to acute hospitalization [43].…”

Social Determinants of Health May Predict End of Life Portable Orders for Life Sustaining Treatment Form Completion and Treatment Selections

“…8,9 Despite the development and expansion of support for end of life planning, there is unequal utilization of these services based on various sociodemographic factors including race, ethnicity, primary language, urbanization, housing stability and education level. 8,[10][11][12][13][14][15][16] For example, in a qualitative study, Purkey and MacKenzie found that individuals with lived experiences of homelessness and/or substance abuse described barriers within the health care system preventing them from achieving their desired end of life goals. 16 Given the expanding population of older adults, coupled with the growing geographic and socioeconomic diversity, it is imperative that we continue to work to understand the unmet needs for end of life care planning for older adults from diverse populations.…”