Respecting autonomy in the end-of-life care of people with intellectual disabilities: a qualitative multiple-case study
Article first published online: 19 MAR 2013
© 2013 The Authors. Journal of Intellectual Disability Research © 2013 John Wiley & Sons Ltd, MENCAP & IASSIDD
Journal of Intellectual Disability Research
Volume 58, Issue 4, pages 368–380, April 2014
How to Cite
Bekkema, N., de Veer, A. J. E., Hertogh, C. M. P. M. and Francke, A. L. (2014), Respecting autonomy in the end-of-life care of people with intellectual disabilities: a qualitative multiple-case study. Journal of Intellectual Disability Research, 58: 368–380. doi: 10.1111/jir.12023
- Issue published online: 5 FEB 2014
- Article first published online: 19 MAR 2013
- Manuscript Accepted: 30 JAN 2013
- Dutch Ministry of Health, Welfare and Sport
- Sluyterman van Loo Foundation
- RCOAK foundation
- Intellectual Disabilities Foundation
- end-of-life care;
- intellectual disabilities;
The aim of this article was to describe how caregivers and relatives shape respect for autonomy in the end-of-life care for people with intellectual disabilities (ID) and to discuss to what extent this corresponds with a relational concept of autonomy, such as described in care ethics.
This study consisted of a qualitative design in which the cases of 12 recently deceased people with ID were reconstructed by interviewing the caregivers and relatives who were closest to the person at the end of their life. A cyclic process of data collection and analysis was used. Interviews were transcribed verbatim and data were analysed inductively.
Respect for autonomy in the end-of-life care of people with ID was mainly reflected in helping the person with ID familiarise with three transitions: new information on the diagnosis and prognosis, changing care needs and wishes, and important decisions that were at stake. In respecting autonomy, relatives and caregivers encountered several challenges. These concerned ascertaining information needs, communicating about illness and death, inexperience in end-of-life care, eliciting current and hidden last wishes, the dependence of people with ID and conflicting wishes. Several qualities were important for respecting autonomy: attention to information needs, connecting, recognising end-of-life care needs, giving space to show wishes and preferences, and discussing dilemmas.
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.