Poor adherence to the mental capacity act and premature death
| Date | 02 December 2014 |
| DOI | https://doi.org/10.1108/JAP-08-2013-0037 |
| Pages | 367-376 |
| Published date | 02 December 2014 |
| Author | P. Heslop,P. Blair,P. Fleming,M. Hoghton,A. Marriott,L. Russ |
| Subject Matter | Health & social care,Vulnerable groups,Adult protection |
Poor adherence to the mental capacity act
and premature death
P. Heslop, P. Blair, P. Fleming, M. Hoghton, A. Marriott and L. Russ
Dr P.Heslop is a Reader in
Intellectual Disabilities
Research, based at Norah Fry
Research Centre, University of
Bristol, Bristol,UK.
Dr P.Blair is a Reader in Medical
Statistics and Professor P.
Fleming is a Paediatrician, both
are based at School of Social
and Community Medicine,
University of Bristol,Bristol, UK.
Dr M. Hoghton is a
GP/Research Lead, based at
Clevedon Medical Centre,
Clevedon Riverside Group,
Clevedon, UK.
A. Marriottworks at the National
Development Team for
Inclusion (NDTi), Bath,UK.
L. Russ is a Public Health
Specialist, basedat
Department of PublicHealth,
Bristol City Council Public
Health Team, Bristol, UK.
Abstract
Purpose – The purpose of this paper is to report the findings of the Confidential Inquiry into premature
deaths of people with intellectual disabilities (CIPOLD) in relation to the Mental Capacity Act (England and
Wales) (MCA) 2005.
Design/methodology/approach – CIPOLD reviewed the deaths of all known people with intellectual
disabilities (ID) aged four years and over who had lived in the study area and died between 2010 and 2012.
Findings – The deaths of 234 people with ID aged 16 years and over were reviewed. There were two key
issues regarding how the MCA was related to premature deaths of people with ID. The first was of the lack
of adherence to aspects of the Act, particularly regarding assessments of capacity and best interests
decision-making processes. The second was a lack of understanding of specific aspects of the Act itself,
particularly the definition of “serious medical treatment”and in relation to Do Not Attempt Cardiopulmonary
Resuscitation guidelines.
Research limitations/implications – CIPOLD did not set out to specifically evaluate adherence to the
MCA. It may be that there were other aspects relating to the MCA that were of note, but were not directly
related to the deaths of individuals.
Practical implications – Addressing the findings of the Confidential Inquiry in relation to the understanding
of, and adherence to, the MCA requires action at national, local and individual levels. Safeguarding is
everyone’s responsibility, and in challenging decision-making processes that are not aligned with the
MCA, the authors are just as effectively protecting people with ID as are when the authors report wilful
neglect or abuse.
Originality/value – CIPOLD undertook a retrospective, detailed investigation into the sequence of events
leading to the deaths of people with ID. To the authors’ knowledge, this is the first time that such research
has associated a lack of adherence to the MCA to premature deaths within a safeguarding framework.
Keywords Learning/intellectual disabilities, Safeguarding, Legal, Premature death, Decision making
Paper type Research paper
Introduction
The Confidential Inquiry into premature deaths of people with intellectual (learning) disabilities
(CIPOLD) in England (2010-2013) was commissioned by the Department of Health to provide
evidence about the extent and circumstances of premature death in people with intellectual
disabilities (ID) and potentially modifiable factors associated with these deaths.
This paper reports the findings of CIPOLD, with a particular focus on how understanding of, and
adherence to the Mental Capacity Act (England and Wales) (2005) (MCA) was a contributory
factor to premature deaths of people with ID.
CIPOLD was established in the wake of long-standing concerns about potentially avoidable
deaths of people with ID. In 2007, Mencap described the circumstances leading to the deaths
of six people with ID whilst in the care of the NHS; their report, Death by Indifference suggested
that people with ID, their families and carers were facing “institutional discrimination” in
healthcare services (Mencap, 2007, p. 1). A subsequent independent inquiry led by
The Confidential Inquiry into deaths
of people with learning disabilities
was funded by the Department of
Health England. The funder played
no part in the study design,
collection of data, data analysis or
interpretation, writing the report of
deciding to submit it for publication.
The study sponsor was the
University of Bristol.
DOI 10.1108/JAP-08-2013-0037 VOL. 16 NO. 6 2014, pp. 367-376, CEmerald Group Publishing Limited, ISSN 1466-8203
j
THE JOURNAL OF ADULT PROTECTION
j
PAGE 367
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