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.
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.
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.
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.
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.
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.
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.
Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A. and Russ, L. (2014), "Poor adherence to the mental capacity act and premature death", The Journal of Adult Protection, Vol. 16 No. 6, pp. 367-376. https://doi.org/10.1108/JAP-08-2013-0037
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