Evaluation of equity in hospice care utilization among medicare-enrolled autistic older adults

Background: Better identification of autistic people and increased life
expectancy for people with intellectual and developmental disabilities
have given rise to an urgent need to better understand end-of-life care in
autistic people. We compared hospice utilization of autistic older adults
with non-autistic older adults and examined if known inequities in hospice
utilization among the general population are exacerbated among autistic
older adults. Methods: We analyzed hospice claims from Medicare, which
insures Americans older than 65 years and covers hospice costs. Our sample
included 5468 autistic older adults and 10,934 matched population
comparison older adults who died during 2013–2021. We used multivariable
logistic regression to compare these groups on the odds of any, early,
intermediate, and late hospice utilization. We defined early hospice
utilization as at least 28 days before death, intermediate as 4–27 days
before death, and late as within 3 days of death. Interaction terms were
used to assess whether effects were modified by beneficiary’s sex, race,
or rurality. In a sensitivity analysis, we repeated our analyses in
unmatched samples. Results: The autistic older adult and matched
population comparison groups had similar odds of any hospice utilization
(odds ratio [OR]: 1.05; 95% confidence interval [CI]: 0.98–1.13), early
(OR: 1.01; 95% CI: 0.91–1.11), intermediate (OR: 1.03; 95% CI: 0.95–1.13),
and late hospice (OR: 1.07; 95% CI: 0.96–1.19). In our models evaluating
the impact of other known inequities, we did not find significant
interactions between autism diagnostic status and sex, race, or rurality.
Results were similar in the unmatched samples. Conclusion: Given the body
of literature documenting health disparities in autistic people, our
findings are heartening, suggesting that Medicare-enrolled autistic older
adults experience similar receipt and timing of hospice as their
non-autistic peers. Our findings highlight the potential power of health
policies that provide zero-cost, universal benefits to Americans in
reducing health care utilization disparities among autistic people.