End-of-Life Care Policies for People With an Intellectual Disability

Abstract

It is estimated that more than 650,000 individuals with intellectual disabilities live with caregivers who are 60 or more years old. As they age, they face end- of- life issues in relation to their caregivers, as well as their own health care needs. This article examines some of the major issues concerning end- of- life care for people with an intellectual disability, presents findings of a recent national survey on end- of- life care vis-á-vis the policy implications, and describes some of the emerging strategies and innovations designed to promote improved end- of- life care.

The road barely taken: funerals, and people with intellectual disabilities

“…As a caveat, McEnhill () states that the usual models for ‘breaking bad news’ need significant adaptation for an individual who may not understand the subtlety of the ‘warning shot’ or the need to ask questions to get information. Such cautious silence reported by managers in this study may have reflected a fear of upsetting and trying to protect people who, it is generally thought, cannot cope with the realities of ‘death’ (Botsford & King ; Ryan & McQuillan ), as well as staff concerns that they lack the skill to disclose bad news to their clients (Tuffrey‐Wijne et al . ).…”

Disability Perspectives on Health Care Planning and Decision-Making

“…Health care professionals, including hospice and palliative care staff, frequently lack training on the unique needs of people with intellectual disabilities and on methods to assess their decisional capacity. 14,15 Recommendations There are unique community perspectives and issues to be addressed in policies seeking to promote health care decisionmaking and advance care planning for people with disabilities. For people with all disabilities, the literature demonstrates over-riding concerns about under-treatment for serious medical conditions due to:…”

“…14 Health care providers, administrators, and families commonly assumed a protective stance toward people with intellectual disabilities, even when decisionspecific capacity may have existed. 15 Recent trends have encouraged providers, researchers, and advocates to question this paternalistic approach for three reasons.…”

Emergency medical services providers' perspective of end‐of‐life decision making for people with intellectual disabilities

“…Future research concerning the end‐of‐life wishes and care of people with intellectual disabilities would be misguided if not situated within a sociocultural context. Historically and through to present day, people with intellectual disabilities have been excluded from expressing their end‐of‐life wishes and participating fully in rituals of death and dying, including their own (Bekkema, De Veer, Hertogh, & Francke, ; Botsford & King, ; Freedman, ; Hahn et al., ). This study—within its limited scope—did not contradict these prior findings; the perception of these EMS providers was wholly that surrogate decision‐makers complete medical orders on behalf people with intellectual disabilities who do not act autonomously.…”

“…Families, providers, ethicists and researchers will likely be called to reflect deeply and often on this question as the use of medical orders and advance directives continues to increase amongst people with intellectual disabilities. (Bekkema, De Veer, Hertogh, & Francke, 2014;Botsford & King, 2005;Freedman, 1998;Hahn et al, 2015). This study-within its limited scope-did not contradict these prior findings; the perception of these EMS providers was wholly that surrogate decision-makers complete medical orders on behalf people with intellectual disabilities who do not act autonomously.…”