Practical Approaches toward Improving End-of-Life Care for People with Intellectual Disabilities: Effectiveness and Sustainability

Abstract

In general, the study found that there was a lack of understanding of each other's role between palliative care professionals and ID staff, with each unsure of what the other service is providing and how it is run. Recommendations include securing a development worker for ID and end-of-life care; conducting training for ID care staff; establishing how ID services are organized within the local area; linking to national training programs; ensuring that senior management is proactively involved; and ensuring that the goals of any initiative are clear and measurable.

Developing a best practice model for partnership practice between specialist palliative care and intellectual disability services: A mixed methods study

“…2,4,[11][12][13] However, a previous study has shown that willingness for these two services to collaborate was not enough to make it happen. 6 It is recognised that interdisciplinary education is an antecedent to collaborative working 14,17 and the limited uptake of professional education in this area of practice needs to be addressed. 14 At a human level, it was also clear from the findings that working together required a relationship of mutual trust and respect.…”

“…6 It is recognised that interdisciplinary education is an antecedent to collaborative working 14,17 and the limited uptake of professional education in this area of practice needs to be addressed. 14 At a human level, it was also clear from the findings that working together required a relationship of mutual trust and respect. 24 Narratives from the interviews, and case scenarios, provided evidence that relationships, centred on trust and respect for each other's knowledge base and skills, could dispel fear and mistrust which may have been present possibly due to services working in isolation and lack of familiarity with their different roles and philosophies.…”

“…24 Narratives from the interviews, and case scenarios, provided evidence that relationships, centred on trust and respect for each other's knowledge base and skills, could dispel fear and mistrust which may have been present possibly due to services working in isolation and lack of familiarity with their different roles and philosophies. 14 …”

“…10 A strong theme in the literature is that better collaboration between intellectual disability and specialist palliative care services is essential to ensure that people with intellectual disabilities receive quality end-of-life care and are not dying disadvantaged deaths. 2,4,[11][12][13][14] A lack of referrals of people with intellectual disability to specialist palliative care and hospice services 3,6,14 suggests that collaboration and partnership practice between both services is limited. Yet similarities and complementarity between the two specialties have been recognised, but research is needed to understand the style and content of collaborative working between them.…”

Transition: the experiences of support workers caring for people with learning disabilities towards the end of life

“…Subsequent position papers in other countries highlight this paucity of information, as well as the gaps in service provision and research evidence 17–19. In England, one of the key barriers to people with LDs accessing palliative care services is the lack of understanding and training of the staff working with them 20. LD staff are often young, lacking in training and experience, while staffing levels are low and turnover is high.…”