'To move or not to move': a national survey among professionals on beliefs and considerations about the place of end-of-life care for people with intellectual disabilities.
Staff want clients with ID to stay home at end of life, but move them anyway because they lack end-of-life skills.
01Research in Context
What this study did
A Dutch team mailed a survey to doctors, nurses, and behavior therapists who serve adults with intellectual disabilities.
They asked one question: should the client stay home for end-of-life care, or move to a hospital or hospice?
The survey also asked what stops staff from keeping clients at home.
What they found
Most professionals said, "Keep the client home."
The same staff then listed "we lack the skills" as the top reason clients are moved anyway.
In short, hearts say home, but hands say hospital.
How this fits with other research
Jones et al. (2010) looked back at 47 files of adults with ID who had died. End-of-life choices were common, yet none of the notes recorded the resident’s own wishes. Freeman et al. (2015) now show why: staff feel unprepared.
English et al. (2020) reviewed ten studies on shared decision-making. Only two let the person with ID take part. The new survey explains the gap—professionals blame their own training deficits.
Kruithof et al. (2022) interviewed parents of adults with profound ID. Parents wanted to lead life-or-death choices and accepted withholding treatment if quality of life was poor. Freeman et al. (2015) add the staff angle: caregivers agree with staying home, but only if they gain the know-how.
Why it matters
You may write beautiful person-centered plans, yet at the final stage the client is moved because direct-support staff fear pain control, seizures, or choking. Ask your agency for a one-day palliative-care workshop. Pair nurses with behavior analysts to write quick-reference protocols for common crises. When staff feel competent, more clients can die in the place they know—their own bedroom.
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02At a glance
03Original abstract
BACKGROUND: The aim of this article was to investigate the beliefs and considerations of professionals concerning an appropriate environment for end-of-life care for people with intellectual disabilities (ID). METHOD: A survey questionnaire was composed based on a scan of relevant literature and the results of group interviews with professionals, family members and people with ID. The questionnaire focused on the respondents' general beliefs about an appropriate environment for end-of-life care and their specific considerations regarding the place of care of the last client for whom the respondent provided end-of-life care. The questionnaire was sent to 294 care staff members recruited from a nationally representative panel of nurses and social workers, 273 ID physicians recruited from the members list of the Dutch professional association of ID physicians, and 1000 general practitioners (GPs) recruited from a nationally representative sample from a national registration of GPs. RESULTS: The overall response was 46%. Professionals predominantly believe that all efforts should be made to ensure that a person with ID receives end-of-life care in their own home environment, and that 24/7 care is available. Respondents indicated that most of the clients (79%) who had last received end-of-life care from an ID care service were able to stay in their own home environment. Decisions to keep the client in their own home environment were primarily based on the familiarity of the environment and the expertise of the team in end-of-life care. Insufficient expertise and a lack of adequate equipment were the main considerations in decisions to move a client. Despite the belief of care staff in particular that the wishes of the person with ID should always be leading when deciding on the place of end-of-life care, only 8% of the care staff and ID physicians explicitly mentioned that the client's wishes were taken into account in actual decision-making. CONCLUSIONS: Professionals agree that end-of-life care for people with ID should preferably take place in the client's home environment, even when nursing expertise, experience and adequate equipment are not (yet) in place. Nonetheless, a lack of expertise in end-of-life care is the foremost consideration in decisions to move a client. If ID care services want to promote end-of-life care in the client's own home, we recommend formulating a policy on how to realise end-of-life care in the client's own home environment and provide sufficient training and support for staff. To involve people with ID as much as possible, we recommend that professionals integrate more collaborative principles in decision-making about the place of end-of-life care.
Journal of intellectual disability research : JIDR, 2015 · doi:10.1111/jir.12130