People with intellectual disabilities at the end of their lives: The case for specialist care?

Abstract

Whilst the philosophical arguments around "specialist" care persist, this service fills a gap in intellectual disability care provision.

The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review

“…A person-centred approach incorporating compassion and empathy are important when caring for people with intellectual disabilities who have difficulty communicating. 7,67,69 Taking time to build relationships, gain trust and confirm understanding can facilitate effective communication. 1,43,49,51,60,73 As people with intellectual disabilities are likely to take longer to express themselves and may rely on communication tools, health care professionals should allocate more time for consultations.…”

“…71 A mixed methods study described the United Kingdom's first specialist palliative care home for older people with intellectual disabilities, demonstrating positive results for quality of life. 7 Key to effective collaboration is a multidisciplinary approach allowing shared expertise between intellectual disability, specialist palliative care, hospital services, community teams and GPs. 40,46,52 Specialist palliative care professionals found that liaising with intellectual disability professionals who knew the patient well was helpful around issues of mental capacity and consent.…”

“…5 With an ageing population comes a rising prevalence of chronic and age-related illness, and subsequently an increased need for palliative and end-of-life care. [5][6][7][8] Despite this trend, people with intellectual disabilities die approximately 25 years sooner than the general population. 9 Evidence from the World Health Organization (WHO) atlas of global resources for people with intellectual disabilities reveals that people with intellectual disabilities are often denied their right to health care, even in countries with a relatively high standard of living.…”

End of life and people with intellectual disability

“…The issue features a number of studies using various qualitative methodologies to understand the experience of people with intellectual disability and their supporters, as might be expected in a developing field of research. There are also several mixed methods studies (Forrester-Jones et al, 2017;Grindrod & Rumbold, 2017;McGinley et al, 2017;Tuffrey-Wijne et al, 2017) and one quantitative paper (Stancliffe et al, 2017).…”

“…The papers by Forrester‐Jones et al. (), McCallion et al. () and Wark, Hussain, Müller, Ryan, and Parmenter () documented a range of important problems with access to end‐of‐life health services.…”