Respecting autonomy in the end‐of‐life care of people with intellectual disabilities: a qualitative multiple‐case study

Abstract

If caregivers and relatives embrace autonomy as a relational construct, attained through an open, active and reflective attitude, and have more access to knowledge about communication and how to identify end-of-life care needs, this could lead to improved respect for the ID persons' autonomy at the end of life. We discuss the view that a relational concept of autonomy is useful for describing respect for autonomy in end-of-life care for people with ID, but that more reflection and openness is needed to sufficiently employ relationships and regard autonomy as a product of joint work.

Learning about dying, death, and end-of-life planning: Current issues informing future actions

“…If caregivers feel ill equipped to do this work, find it personally distressing, or experience other negative consequences, then they will often avoid issues of dying and death. Disability staff reported that they did not know how to inform people with intellectual disability about dying and death (Bekkema et al, 2014;Wiese et al, 2013). Clearly, one solution to this situation is training caregivers about how to do so effectively.…”

“…There is also some evidence to suggest that caregivers avoid the topic, either to protect themselves from possible distress, or because they do not know how to broach the issue (Wiese et al, 2013). Talking about the end of life is undeniably difficult, and combined with the learning difficulties experienced by many people with intellectual disability, multiple challenges exist (Bekkema, de Veer, Hertogh, & Francke, 2014).…”

Intellectual Disabilities and Decision Making at End of Life: A Literature Review

“…; Bekkema et al . ,b). The reasons for the lack of involvement include but are not limited to communication challenges, lack of education on caring for individuals with an intellectual disability by the medical community, incorrect assumptions that the individual lacks capacity to consent, and fear of legal consequences if formal caregivers are accused of not providing enough care (Ellison & Rosielle ; Johnson ; Lotan & Ells ; Friedman et al .…”

“…; Bekkema et al . ,b). Medical staff and other members of the multidisciplinary team may be vulnerable to assumptions that the individual with an intellectual disability does not possess the capacity to understand the terminal diagnosis and therefore is unable to consent to treatment (Johnson ; Huneke et al .…”

“…Furthermore, medical staff and other members of the multidisciplinary team in addition to family members may feel that communicating the presence of a terminal diagnosis to individuals with an intellectual disability would cause undue stress and opt to withhold sharing this information which prevents decision making by individuals with an intellectual disability (Johnson ; Bekkema et al . ,b).…”