Unique and universal barriers: hospice care for aging adults with intellectual disability.
Hospice shuts out adults with ID unless you build the bridge before the crisis hits.
01Research in Context
What this study did
Goodwin et al. (2012) read every paper they could find on hospice care for adults with intellectual disability.
They grouped the problems into two piles: barriers that only people with ID face and barriers that everyone faces.
The review gives a map of why hospice doors stay closed for this group.
What they found
Staff often lack training to support adults with ID who are dying.
Hospice rules assume the patient can speak for themselves; many with ID cannot.
Carers feel pushed out just when they are needed most.
How this fits with other research
Walton (2016) widens the lens and shows the same access gaps exist across all geriatric care, not just hospice.
Voss et al. (2019) zooms in on advance care planning and finds it starts too late and rarely includes the person with ID, echoing the communication barrier flagged in Goodwin et al. (2012).
English et al. (2020) confirms that shared decision-making is mostly absent; only 2 of 10 studies had the person with ID at the table.
Together the four papers trace one clear story: barriers at the door, barriers at the planning table, and barriers during every choice that follows.
Why it matters
If you work with adults who have ID, expect hospice to say “we don’t serve people like that.” Start building the bridge now. Ask hospices for joint training, create picture-based advance directives, and insist on carer presence in the plan. The earlier you act, the smoother the final transition will be.
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02At a glance
03Original abstract
As life expectancy of people with intellectual disability (ID) has increased, there has been a concurrent increase in age-related illnesses and conditions similar to that of the general population. These circumstances result in people with ID dying from typical life-ending conditions, and thus, they require similar end-of-life services such as palliative and hospice care. Although there are notable barriers to hospice for all, people with ID face additional challenges in accessing the benefits of these services. This article presents a review of the literature on these issues, underscoring the multiple challenges and the importance of a more collaborative approach between hospice and palliative care workers with people with ID, their families, and other important stakeholders.
American journal on intellectual and developmental disabilities, 2012 · doi:10.1352/1944-7558-117.6.509