The Use Of Hospice Care In Autistic Older Adults

Study Information

Methods: The research team looked at administrative hospice claims from Medicare. Medicare covers hospice costs for insured Americans over 65.  The sample included 5,468 autistic older adults and 10,934 non-autistic controls who died during 2013-2021.

We defined three hospice utilization periods: (1) Early, at least 28 days before death; (2) Intermediate, 4-27 days before death; and (3) Late, within 3 days of death. We used statistical analysis to assess whether effects were influenced by sex, race, or rurality.

Results: The autistic older adult and non-autistic control groups had similar likelihood of any hospice care service use. When assessing whether sex, race, or rurality influenced these results, we did not find anything significant.

Limitations: Findings may not predict hospice use among future generations of autistic older adults because the older adults in this study were born and raised before access to modern diagnoses and supports. Some autistic older adults may have been miscategorized as non-autistic.

Conclusions: Autistic and non-autistic older adults had similar likelihood of using any, early, intermediate, and late hospice care.

The findings highlight the possibility of health policies that provide zero cost, universal benefits to Americans: because Medicare is a zero-cost, universal benefit, it’s likely that autistic and non-autistic people alike can use the services they need for end-of-life care.

Hospice & End-Of-Life Care

How to Qualify for Hospice Care

To qualify for hospice care, you must meet all of these criteria:

1.  Be enrolled in Medicare Part A;

2. Your doctor and the hospice physician certify that you have a oiiterminal illness with a life expectancy of 6 months or less;

3. You elect to receive palliative care instead of cure-based care; and 4. You sign a statement choosing hospice instead of other treatments

How Hospice Care Is Funded

As a defined benefit of Medicare, hospice can be paid as a benefit, or as part of a Medicare Advantage plan, by state Medicaid plans, or by private insurance. Because different services are covered by different payment sources, make sure to discuss these sources and services with your treatment team.

The Importance of End-Of-Life Planning

Research has shown that having discussions about future medical treatments with your family, treatment team, and loved ones increases the likelihood that you will receive the care that you want for yourself.   Creating a plan can also help your family and loved ones feel less guilty or confused, allowing them to grieve in a healthier way.

NEXT STEPS FOR RESEARCH

Research has shown that differences may exist in the quality of care received between autistic and non-autistic people; future research related to hospice care should consider qualitative exploration of what these differences might entail in the context of end-of-life care for autistic older adults to answer the question of whether autistic adults receive the types of care that are most beneficial for their specific needs. Additionally, further research is needed to examine whether the findings from this study may be replicated for other Medicare benefits, like the care received from skilled nursing facilities.