Poor adherence to the mental capacity act and premature death

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.

The Mental Capacity Act: 10 years on – the key learning areas for healthcare professionals

“…3 The MCA legislation sets a specific framework for professionals to follow when completing the assessment of mental capacity. 2 Prior to 2005, mental capacity assessments were resource focused and biased 10,11 and a pre-existing diagnosed impairment of the mind or brain was the diagnostic threshold that triggered the assessment of mental capacity. However, the literature suggests that mental capacity assessments were unlawfully carried out when there were no diagnosed impairment of the mind or brain and no reason to doubt capacity and occurred when people labeled as "a difficult patient" were perceived by others as making unwise decisions with an element of risk attached.…”

“…Yet, worryingly, a report published 6 years after the introduction of the MCA, which explored the premature deaths of those with an intellectual disability, found that decisions were often made by one person, rather than the multidisciplinary group approach, which is advocated in the MCA. 35 Furthermore, Heslop et al 10 and Taylor 11 found that health care professionals' decisions were influenced by prejudice and personal views and based on what they felt was the appropriate decision to be made. This was combined with a lack of information about the patient and family, which is required in order to achieve a truly holistic review.…”

Suicide amongst people with intellectual disability: An Australian online study of disability support staff experiences and perceptions

“…It is estimated that 20% of individuals with an ID will display self‐injurious behaviours (Davies & Oliver, ) and are more likely to have experienced historical systematic abuse (e.g. Heslop et al ., ). Dodd et al .…”

“…It is estimated that 20% of individuals with an ID will display self-injurious behaviours (Davies & Oliver, 2013) and are more likely to have experienced historical systematic abuse (e.g. Heslop et al, 2014). Dodd et al (2016) identified 13 papers that reported on risks for suicide in persons with ID, with the most common factor being the presence of a co-morbid mental health issue.…”

Exploring the impact of mental capacity on breast screening for women with intellectual disabilities

“…Marshall and Sprung's () systematic review concluded that the MCA is not sufficiently embedded within practice. This was attributed to a lack of knowledge, awareness and understanding, especially around conducting mental capacity assessments (Heslop et al., ; Marshall & Sprung, ). Willner et al.…”