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Increasing understanding and uptake of advance decisions in Wales

Kitzinger, Jenny ORCID: and Kitzinger, Celia 2016. Increasing understanding and uptake of advance decisions in Wales. [Discussion Paper]. Cardiff: Public Policy Institute for Wales. Available at:

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An ‘Advance Decision’ is a legally binding record (given statutory force by the Mental Capacity Act 2005) of the treatments that someone wishes to refuse if they lose capacity to make such decisions for themselves in future. The Mental Capacity Act 2005 refers to them as ‘Advance Decisions’ (s. 24(1)): given widespread confusion about the terminology associated with end-of-life planning tools, we have often opted in this report to use the term ‘Advance Decisions to Refuse Treatment’ (ADRTs), Barriers to uptake of ADRTs include misunderstanding about what is involved; scepticism about whether they will be respected; and the mistaken belief that an ADRT is unnecessary if people have already informed family members or healthcare professionals of their wishes. There is widespread misunderstanding about the power of family members to give or withhold consent for adult relatives, and misinformation and confusion about the distinctive legal status of ADRTs (compared with other advance planning tools). This report examines the legal position and identifies ways of increasing awareness and uptake of ADRTs in Wales. It suggests that the Welsh Government has a key role to play, alongside partner organisations such as charities, in promoting better understanding of ADRTs and ensuring that people’s right to refuse treatment is respected through: - Public education, media engagement and cultural events to encourage people to plan for potential future loss of capacity; - De-bunking the myth that ‘next of kin’ have decision-making powers and correcting official forms that may mislead people about the legal status of their own or a relative’s expressed wishes; - Facilitating access to well designed ADRT forms/guidance and skilled support, both for the general population and for particular groups; - Normalising ADRTs (e.g. offering registration when patients sign up with a GP); - Training relevant practitioners to ensure that they understand what ADRTs are (and when they are valid and applicable), are able to provide appropriate guidance or referral, and can act in accordance with the law concerning them; - Creating an All-Wales national repository – flagging key emergency decisions and ensuring accessibility of full ADRT documentation.

Item Type: Monograph (Discussion Paper)
Date Type: Publication
Status: Published
Schools: Journalism, Media and Culture
Subjects: H Social Sciences > HM Sociology
K Law > KD England and Wales
R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Publisher: Public Policy Institute for Wales
Funders: Welsh Government
Date of First Compliant Deposit: 30 March 2016
Last Modified: 31 Oct 2022 10:54

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