Death and learning disability: a vulnerability perspective
| Pages | 5-14 |
| Published date | 01 February 2003 |
| Date | 01 February 2003 |
| DOI | https://doi.org/10.1108/14668203200300002 |
| Author | Sue Read,David Elliott |
| Subject Matter | Health & social care,Sociology |
The Journal of Adult Protection Volume 5 Issue 1 • February 2003 © Pavilion Publishing (Brighton) Limited 5
key words
learning disabilities
death
bereavement
person centred planning
abstract
People with learning disabilities
often have to cope with death,
dying and bereavement without
being fully informed of the
circumstances and sometimes
without being told that death is
imminent or indeed has occurred.
This paper explores the issues
associated with death and dying
from the perspective of people with
learning disabilities, and considers
proactive ways of working in this
sensitive area.
Introduction
People with learning disabilities who are dying are vulnerable
adults on both counts: on account of their intellectual
disability and their illness. Consequently they are in double
jeopardy when it comes to having their needs met and their
rights and entitlement to proper treatment and palliative
health care honoured. They are also at risk of human rights
abuses in respect of end-of-life decisions.
People with learning disabilities who are bereaved also
form a vulnerable group in that their grieving may not be
properly identified or supported and their distress glossed over
as if it were part of their learning disability rather than a
universal human response to loss.
Deits said: ‘No life experience is more common than losing
someone dear to you or something of vital importance to you’
(Deits, 2000). The universal experiences of loss generally and
bereavement specifically have been well documented over
recent years (Raphael, 1984; Worden, 1991; Stroebe et al,
1993; Parkes & Markus, 1998; Archer, 1999). Among the
wealth of literature, authors generally agree that despite the
acknowledged similarities in grieving, everyone grieves in
their own unique way. Any template or framework of grief
(for example, the four task approach described by Worden,
1991) is therefore offered as a recipe rather than a prescription
of grief work and is not to be followed literally. People deal
with death as uniquely as they deal with life. However,
individuals do need the opportunity to be actively involved in
the death or dying process. Individuals also need to be given
Death and learning
disability: a vulnerability
perspective Sue Read
Lecturer in Nursing and Bereavement
Counsellor, based at the Department of Nursing,
Keele University
David Elliott
Community Nurse (Learning Disabilities), South
Staffordshire Health Care Trust
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