Living and dying with dignity: the best practice guide to end-of-life care for people with a learning disability

Document type
Read, Sue; Morris, Heather
Date of publication
1 November 2008
Disabled people, Health Services
Social welfare
Material type

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This document provides a guide to good practice in the provision of end-of-life care to those with learning disabilities. Chapter one provides a context to the guide; a backcloth against which the project was developed and how the guide was produced. Chapter two reflects on the persistent challenges inherent in accessing end-of-life care for someone with a learning disability, with a focus on communication issues. Chapter three recognises that people with a learning disability may not be able to spot ill health, and introduces ways for professionals to notice changes indicative to potential ill health. Chapter four focuses upon where and how to access specialist care and support, with the person remaining at the centre of care. Issues around breaking bad news are explored here.

Chapter five explores the concept of holistic care and support, introducing the importance (and challenge) of spiritual support as a key dimension of holistic care. Chapter six promotes the importance of actively involving the dying person in care and treatment options, promoting autonomy and choice and minimising the potential for disenfranchised death. Chapter seven embraces the potential for providing a good death; encouraging carers to explore issues such as preparing for death, making a will, and saying goodbye to families, friends and loved ones, with the person who has a learning disability.

Chapter eight deals with the aftermath of death, providing ideas to constructively support the bereaved person with a learning disability as they come to terms with their loss and seek ways to both accommodate and commemorate their loss. Chapter nine seeks to anticipate the future challenges from a practice and research perspective. This section also incorporates a checklist for positive practice – this may be useful from both learning disability and end-of-life care perspectives. The final chapter is a short reflection by the authors around the development of this best practice guide and the journey throughout the project. The resources and references sections contains useful supportive resources for anyone involved in this area of care. The 12-point reference booklet is a succinct reminder of the key issues that can help to promote better end-of-life care for all people with a learning disability.

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