The palliative care experiences of adults with learning disabilities/intellectual disability: The implications for ethical decision making

Abstract

This paper presents some of the ethical challenges facing services supporting adults with learning disabilities/intellectual disability with life-limiting conditions and arises from a qualitative investigation of the preparation for, and responses to their deaths. The study highlights the problems and differential responses of health and social care professionals to consent and ostensible treatment refusal and gives rise to concern that the principles promoting people's choices are in danger of being distorted to justify giving up too soon or too easily. The paper presents ideas about how health and social care professionals might work toward better outcomes.

End‐of‐Life Care and Dying: Issues Raised by Staff Supporting Older People with Intellectual Disability in Community Living Services

“…These challenges were also articulated by Flynn et al . () who advocated the importance of clear ethical frameworks to assist decision making. The current findings, combined with this past research, point to many further questions requiring examination.…”

Decision making about medical interventions in the end-of-life care of people with intellectual disabilities: A national survey of the considerations and beliefs of GPs, ID physicians and care staff

“…The identification and management of pain and other symptoms can be complicated in people with ID, as signals that express pain or distress are hard to recognise [11], [12] and [13]. Difficulties in determining wellbeing may lead professionals to rely on biased presumptions about a person's needs and values [14] and [15]. So far, most studies addressing medical interventions in the end-of-life care of people with ID have either been case descriptions [14] and [15] or have focused specifically on decisions with a possible life-shortening effect [16] and [17].…”

“…Difficulties in determining wellbeing may lead professionals to rely on biased presumptions about a person's needs and values [14] and [15]. So far, most studies addressing medical interventions in the end-of-life care of people with ID have either been case descriptions [14] and [15] or have focused specifically on decisions with a possible life-shortening effect [16] and [17]. Yet many medical intervention may be potentially burdensome for people with ID who need end-of-life care due to their limited level of understanding and communication difficulties.…”