End of Life Care for People with Learning Disabilities

Comforting an older person with a helping hand

In the UK the population of people with learning disabilities (PwLD) is not only growing but also living longer. Despite this growing population and evolving ethos’s of care and equality, PwLD still experience inequalities in health and social care, experiencing unmet needs across many physical and psychological domains.

PwLD are particularly vulnerable to unmet needs during end-of-life, due to the complex needs they can present with, alongside issues with communication and misunderstanding among care providers. The result of these challenges is end-of-life care which often does not meet the expectations, preferences or symptom relief needs of PwLD, resulting in distress and trauma for families and those involved in care.

The aim of this study was to explore these challenges in the UK, identifying barriers and facilitators to the delivery of appropriate, personalised, and high-quality end-of-life care for PwLD.

An in-depth qualitative approach was taken and interviews were conducted with service commissioners and providers directly involved in health and social care for PwLD. Commissioners and providers unanimously recognised the vulnerability of PwLD to unmet needs during dying and death, and the many challenges to be negotiated at both the level of service design and provision.

Commissioners described central to meeting the needs of PwLD was overcoming communication challenges, and bridging understanding so that PwLD (and their families and caregivers) can be engaged in open conversations which prepare them in advance for end-of-life. Interviewees emphasised the need for health and social care provision to confront death, dying and end-of-life. In confronting these challenging topics the importance of a 'good' death and the universal right to such can be acknowledged.

For more information about this project, please contact rebecca.chandler@aru.ac.uk.

Funding and collaborators

This project was co-lead by Dr Gary Bellamy, and funded by the Faculty of Health, Education, Medicine and Social Care at ARU. 

Publications and conferences

Chandler, R., C. and Bellamy, G., 2020. Dying with a Learning Disability in the UK: A Qualitative Exploration of the experiences of Commissioners & Service Providers. The End of Life Experience: 3rd Global Conference. [poster]