Support for decision-making guidance in England: a pragmatic review

TL;DR

This paper reviews how decision-making support is understood and implemented in England, highlighting legal and practical challenges.

Contribution

The study identifies gaps and inconsistencies in SFDM guidance and proposes a more multifaceted approach aligned with international standards.

Findings

Current SFDM guidance in England lacks multifaceted advice for different decision types and supporter roles.

There is a dualistic model of SFDM due to diverging legal interpretations.

Gaps exist in guidance for mental health contexts and third-party involvement.

Abstract

Law and policy concerning personal decision-making increasingly recognizes a role for support to enable greater autonomy and legal recognition for adults whose decision-making ability may be limited. Support for decision making (SFDM) is embedded in England and Wales under the Mental Capacity Act 2005 (MCA). It has also gained traction internationally through the UN Convention on the Rights of Persons with Disabilities (CRPD), to which the UK is a signatory. However, these two legal reference points diverge in their understanding of SFDM, which presents challenges for putting it into practice. A pragmatic review methodology identified 40 resources containing SFDM guidance, providing insight into its implementation and conceptualization in England. An analysis indicates the need for authoritative guidance that provides more multifaceted advice, recognizing key variables including: the nature of the decision, source of decision-making difficulties, and the relationship of the supporter. Gaps in guidance provision are also identified for decision-makers, third parties, and the mental health context. The resources largely conceptualize SFDM as a means to enable mental capacity. However, recent developments propose a CRPD-aligned approach that includes SFDM in the context of substituted decisions. This generates a dualistic model of SFDM in England, raising new questions in this area.

Tables

Table 1.. Eligibility criteria.

Inclusion criteria	Exclusion criteria
Includes advice on SFDM for any person with a disability or condition that may affect their decision-making.	Exclusive focus on shared decision-making.
Published by an organization in England, post-2007.	Published outside of England or pre-2007.
Support aimed at adults (16 years old and over).	Support aimed only at children (under 16 years old).
SFDM advice is either the primary focus or a substantial feature of the document.	SFDM advice is limited, for example, outlining only the principles of the MCA 2005.
Intended for people involved in the provision or practice of SFDM, including decision-makers, support providers, or third parties.	Intended for an academic audience only.
In the case of multiple versions: most recent	In the case of multiple versions: not the most recent.

Table 2.. Identified resources containing SFDM guidance.

Resource	Published by	Date	Written for	Law	Decisions	Decision-maker
A carer’s guide to the Mental Capacity Acta	Sitra, The Carers Trust and Care Charts UK	2015	Carers	MCA	All	People with dementia
A practical guide to supported decision-makingb	Paradigm	2023	Family, decision-maker, professionals, friends	MCA, Care Act 2014, CRPD	All	All but particularly people with learning disabilities
Capacity to consent to sexual relationsc	The British Psychological Society	2025	Practitioner psychologists	MCA, Care Act 2014, Sexual Offences Act 2003	Sexual relations	Not specified
Conducting research with people not having the capacity to consent to their participation: A practical guide for researchersd	The British Psychological Society	2020	Researchers	MCA	Participation in research	Not specified
Decision-making and consente	General Medical Council	2020	Medical practitioners	Mental capacity law across UK jurisdictions	Medical	Not specified
Decision-making and mental capacityf	National Institute for Health and Care Excellence	2018	Health and social care practitioners, independent advocates, third-party practitioners, service users, families, friends, carers.	MCA	All	Not specified
Did you know? The benefits of supported decision-making (consent)g	NHS Resolution	2018	NHS staff	MCA	Medical	Not specified
East Sussex Mental Capacity Multi-Agency Policy and Procedures, Edition 1h	East Sussex Safeguarding Adults Board	2019	Health and social care staff	MCA	All	Not specified
Facts for families: Supporting people with profound and multiple learning disabilitiesi	Dimensions	2018	Families and friends	MCA	All	People with profound and multiple learning disabilities
Guidance on money management for people who may lack capacity to make some decisions about how their money is usedj	ARC (Association for Real Change), Social Care Institute for Excellence	2011	Support staff and managers	MCA	Financial	Not specified
Hft operational standards: Making decisions and consent to support (Appendix 1: Practical Tips on Supporting People to Make their Own Decisions)k	Hft	2017	Hft Staff	MCA	All	People with learning disabilities
Good and promising practice guide: Inclusive training about Article 12l	IDEA 12, Inclusive Direction of Education for Adults on Article 12	2017	Trainers developing sessions on supported decision-making	CRPD (and international models)	All	Not specified
Independence, choice and risk: a guide to best practice in supported decision-makingm	Department of Health	2007	Everyone involved in supporting adults (18 +) using health and social care in any setting	MCA	All	Not specified
In the driving seat: A workbook to help me plan my supportn	In Control	2007	Decision-makers who may need support	None	All	Not specified
Involve me: Practical guideo	Mencap	2011	Families, frontline staff, service managers, people who plan and commission services, advocates—including peer advocates, and decision-makers at the national, regional, and local level.	MCA	All	People with profound and multiple learning disabilities
Involving people in their own health and care: Statutory guidance for clinical commissioning groups and NHS Englandp	NHS England	2017	Clinical Commissioning Groups and NHS	MCA	Medical	Not specified
Making banking easier—A guide written by Dosh on how to work with banks to get what you needq	Dosh Financial Advocacy	2014	Decision-makers who may need support	MCA, Equality Act 2010	Financial	People with learning disabilities
Making decisions and managing difficult situationsr	Alzheimer’s Society	2016	Carers	MCA	All	People with dementia
Making decisions: A guide for people who work in health and social cares	The Mental Capacity Implementation Programme	2024	Health and social care staff	MCA	All	Not specified
Making everyday, financial, health, and welfare decisions post 16t	Down’s Syndrome Association	2021	Families and carers	MCA	All	People with Down’s Syndrome
Making financial decisions: Guidance for assessing, supporting and empowering specific decision-makingu	Empowerment Matters	2014	Providers of relevant support and banking sector staff	MCA	Financial	Not specified
MCA Principle 2—supported decision-making *MVv	Social Care Institute for Excellence	2018	Providers of relevant support	MCA	All	Not specified
Mental Capacity Act 2005 in practice: Learning materials for adult social workersw	Department of Health	2015	Social workers	MCA	All	Not specified
Mental Capacity Act 2005: An easy read guidex	Local Government Association and NHS England	2015	Decision-makers who may need support	MCA	All	Not specified
Mental Capacity Act code of practicey	Department for Constitutional Affairs	2007	Providers of relevant support	MCA	All	Not specified
Mental Capacity Act resource and practice toolkit: Supporting people to make their own decisionsz	Tri.x	2024	Practitioners working in statutory social care or healthcare	MCA	All	Not specified
Mental Capacity Act practice guidanceaa	Cumbria County Council	2023	Practitioners in adult social care	MCA	All	Not specified
Mental Capacity Act resource packbb	Mencap	2016	Family	MCA	All	People with learning disabilities
Ethics Toolkit, Mental Capacity Act—England and Walescc	British Medical Association	2024	Medical doctors	MCA, CRPD	All	Not specified
Mental capacity—support decision-making after brain injurydd	Headway	2016	Providers of relevant support and third parties	MCA	All	People with brain injury
Mental capacity: supporting people with decisionsee	Choice Support	2019	Frontline staff and managers	MCA	All	Not specified
National Mental Capacity Act competency frameworkff	The National Centre for Post-Qualifying Social Work and Professional Practice	2017	Health and social care Staff	MCA	All	Not specified
PfA Factsheet: The Mental Capacity Act 2005 and supported decision-makinggg	Preparing for Adulthood (National Development Team for Inclusion, The Council for Disabled Children)	2014	Family, carers and local authorities	MCA, Care Act 2014, Children and Families Act 2014	All	Any young person at risk of exclusion due to disability
Providing Independent Advocacy under the Care Acthh	Department of Health	2014	Independent advocates	CRPD, MCA, Care Act 2014, Children and Families Act 2014	All	Not specified
Shropshire, Telford, and Wreklin Multi-Agency Mental Capacity Act Guidanceii	NHS Shropshire, Telford and Wreklin Integrated Care Board	2024	Staff and others working in Shropshire and Telford and Wrekin	MCA	All	Not specified
Supported Decision-Making Toolkit for People with Communication Difficultiesjj	National Mental Capacity Forum, Essex Autonomy Project	2023	Providers of relevant support	MCA	All	People with communication difficulties
Supported Loving Toolkit: Contraceptionkk	Choice Support	2019	Anyone providing support	MCA	Contraception and sexual health	People with learning disabilities and autistic people
Supporting people to make decisions: A guide to the Mental Capacity Act for family carersll	Dimensions	2020	Families with a relative who has learning disabilities and/or experiences autism	MCA	All	People with learning disabilities and/or who experience autism
Thinking ahead: a planning guide for familiesmm	Foundation for People with Learning Disabilities	2013, updated 2015	Families	MCA, Care Act 2014	All (planning for the future)	People with learning disabilities
What makes a good assessment of capacity?nn	British Psychological Society	2019	Psychologists	MCA, Care Act 2014	All	Not specified

Full text

I. INTRODUCTION

The concept of support for decision-making (SFDM) is gaining prominence internationally in public policy.1 The broad motivation is the idea that, for adults, the freedom to make our own decisions is crucial to personal autonomy and to the realization of certain human rights, and that in the context of some disabilities and medical conditions, support practices can increase opportunities for being the decision-maker. Those who may be supported in decision-making include people with dementia, brain injury, mental ill-health, or neurodevelopmental disabilities such as intellectual disability and autism. In England and Wales, relevant legal provisions are found in the Mental Capacity Act 2005 (MCA) and the Care Act 2014.2 However, insight into the practice of SFDM in this jurisdiction is currently limited.3

The present review aims to provide insight into SFDM practice in England, through an analysis of current guidance. Guidance documents are considered a useful platform for the implementation of law, policy, and evidence in practice.4 They are a means for promoting consistency and efficiency in care and a method to close the gap between evidence and practice.5 Medical professionals have a legal duty to stay up-to-date with developments in practice, including relevant guidance,6 and commentators have noted an increasingly important role for such documents in determining the standard of care in cases of alleged clinical negligence in England.7 Resources that include guidance on SFDM therefore offer a window into its implementation. The review is pragmatic rather than systematic due to the nature of the documents, which are largely unpublished grey literature.8 The findings address a gap in understanding about the kinds of organizations that are producing relevant guidance in England; who it is for; its scope in terms of the people being supported (hereafter decision-makers) and the kinds of decisions concerned; the practical advice that is provided; and its legal grounding.

Insight concerning the legal grounding of guidance is important because of apparent tensions in the conceptualization of SFDM. For the purpose of this review, SFDM is defined as any activity where someone is assisted in decision-making, in the context of any disability or condition. This definition encompasses two legal perspectives that envisage SFDM in importantly different ways. One understands support primarily as a means to enable, and potentially augment, the person’s decision-making abilities. In England and Wales, this perspective is linked to the MCA, which provides that an adult must not be deemed unable to make a decision unless ‘all practicable steps’ have been taken to enable the person’s mental capacity to make the decision, as defined by the Act, ‘without success’.9 This requirement is designed to ensure that any interference with Article 8 protections of autonomy under the European Convention of Human Rights, in applications of the MCA, is proportionate.10 It is often, though not uncontroversially, described using the term ‘supported decision-making’.11

A second perspective on SFDM emphasizes enabling the expression of the person’s will and preferences and is linked to the UN Convention on the Rights of Persons with Disabilities (CRPD). The CRPD mandates that its signatories, which include the UK, ‘take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity’,12 giving ‘primacy to a person’s will and preferences’.13 While not legally bound by the Convention, as a signatory, the UK has expressed an intention to comply with it. The CRPD is playing a significant role internationally in law reform around personal decision-making, with countries including Scotland and Australia having undertaken major reviews that include this area, to move towards CRPD compliance.14

Discussions of SFDM in connection with the Convention place much less emphasis on mental capacity, in line with scepticism about the concept expressed by the UN treaty body, the Committee on the Rights of Persons with Disabilities.15 However, despite a literature discussing key concepts such as will and preferences, there remains uncertainty about how a CRPD perspective on SFDM translates into practice.16 Grappling with the implementation of Article 12, the recent Scottish review of mental health law observed, ‘We believe that there is considerable force in the Committee’s arguments, but there are also some practical difficulties. There is no agreed methodology for assessing “will and preferences” or resolving dilemmas where these are in tension’.17 In light of these tensions and uncertainties, the present review sought to examine the legal foundations of current SFDM guidance in England.

An exploration of guidance also provides an opportunity to identify potential gaps or weaknesses in the implementation of SFDM in England. Post-legislative scrutiny of the MCA found that the decision-making support it requires was ‘rare in practice’.18 Research into the MCA has suggested that more guidance is needed to help social care practitioners implement its principles, including its support requirement.19 The literature advocating for SFDM in connection with the CRPD also acknowledges the benefits of written resources,20 with Browning observing that poor practice in SFDM, ‘is often the result of a lack of information and appropriate guidance’.21

II. TWO PERSPECTIVES ON SUPPORT FOR DECISION-MAKING

To ground the analysis and further motivate the work, this section provides a brief account of the identified legal tensions concerning the meaning of SFDM. We propose that these tensions can be understood in terms of a divergence in assumptions about what is essential to adult human agency. Viewed in this way, the different approaches to SFDM are explained at least in part by a philosophical difference that sits in the background of the legal debates.

Linked to the MCA is a perspective that sees certain functional abilities (or decision-making skills)22 as essential to adult human agency, and therefore also potentially relevant to legal standing or legal agency (jointly referred to as legal capacity). This perspective connects with some prominent thinking in the philosophical literature. Discussions in this context sometimes concern the psychological elements necessary for personal autonomy, and theorists have pointed to capacities for rational deliberation,23 the ability to reflect on and endorse one’s own desires,24 and to reflect on one’s life as a whole.25

However, some developments in philosophy and cognitive science have challenged these ideas. For example, Jaworska rejected the importance placed by Dworkin on the ability to have a life plan, in the realization of autonomy.26 Instead, Jaworska focuses attention on the capacity to value. More recently, Doris has used scientific developments to reject the standard idea that the exercise of agency requires the exercise of reflective agency, understood as ‘judgement and behaviour ordered by self-conscious reflection about what to think and do’.27 In its place, Doris develops a theory in which the exercise of agency is about the expression of the person’s values, where this ‘need not be a reflective process’.28

In different ways, these challenges to orthodox understandings of autonomy and agency resonate with a perspective that is implicit in the CRPD approach to SFDM. On this view, adult human agency is grounded in will and preferences, which is what makes only these features essential for legal standing and legal agency.29 The decision-making ‘skills’30 or abilities that are considered a core part of adult human agency from the perspective linked to the MCA, may therefore be provided by others as support measures without affecting the person’s legal capacity.31 Understood in this way, the finding that someone lacks certain functional decision-making abilities indicates the need for support rather than the need to make a decision on their behalf.32 SFDM is seen as the answer in place of substituted decision-making, setting up a binary between these two practices.

However, recent developments in the implementation of Article 12 have challenged this way of understanding SFDM, as distinct from substituted decision-making. In a discussion of the issue as part of an Australian Royal Commission report, Bigby and colleagues argue for a conception of SFDM grounded in the CRPD, where ‘support and substitution are not viewed in opposition, but rather as existing along a spectrum’.33 This position is motivated by a perspective among respondents in their consultation process, ‘that interpreting the preferences of a person with severe cognitive impairment did not naturally fit within the binary understanding of supported decision-making, suggesting that alternative approaches are necessary’.34 Respondents indicated the need to recognize an in-between space that exists in practice, which does not neatly fit the binary understanding of either supported or substituted decision-making.35 The resolution proposed by Bigby and colleagues holds that:support and substitution are on a spectrum where some—but not all—substitute decisions are considered a form of supported decision-making, rather than being in opposition to it. In practice, the relevant marker of supported decision-making is that an individual’s stated or perceived ‘will and preferences’ remain at the centre of the decision.36

This sketch of the theoretical landscape provides a backdrop for the findings of this review. In this article, the term SFDM is used instead of supported decision-making, on the basis that SFDM is a broader concept that can be straightforwardly recognized within both the MCA and CRPD.37 As defined by the Committee on the Rights of Persons with Disabilities, supported decision-making refers narrowly to legal regimes that are contrasted with substituted decision-making regimes.38 On this understanding, supported decision-making is not possible under the MCA. However, SFDM can be recognized as support measures within the CRPD,39 which may be implemented in the context of regulation that allows for substituted decision-making, such as the MCA. The guidance identified in this review uses a variety of terminology to describe SFDM.

III. METHODOLOGY

A pragmatic review methodology was used due to the nature of the documents, which are largely grey literature. Grey literature tends to be unpublished, web-based, and vast, making it difficult to search systematically using established databases.40 Following the approach developed by others, systematic review search methods were adapted to accommodate grey literature.41

A. Eligibility criteria

The review identified materials that included guidance on supporting decisions for any adult with a disability or condition that may affect their decision-making, using the eligibility criteria in Table 1. Among the exclusion criteria was an exclusive focus on shared decision-making. Shared decision-making emphasizes a partnership, generally between a patient and healthcare professional, where a decision is made together, in contrast to SFDM, where the decision-maker is distinguished from the person providing support.42

B. Search strategy

Resources were collected between January 2020 and June 2024. Initial search and screening activity was carried out between January and February 2020, and was followed up in June 2022, June 2023, and June 2024, to seek new or updated guidance. Final checks took place in May 2025.

The initial search involved two strategies to maximize the range of sources for guidance. A targeted search identified organizations that were considered likely to have or recommend guidance on SFDM. These comprised organizations supporting people with conditions that might affect their decision-making in (n = 41), advocacy organizations (n = 16), government and local authorities (n = 7), organizations providing support for carers (n = 5), Royal Colleges (n = 5), care providers (n = 5), public bodies (n = 5), statutory bodies (n = 3), and others (n = 6). The organizations were identified based on the authors’ existing knowledge and Google searches using key terms. Local authorities were randomly selected from regions across England. Websites for the organizations were searched for relevant content, for example, in the form of web pages or documents. Where guidance could not be found, the organization was contacted via email and/or telephone. Informal conversations were conducted in which organizations were asked about what guidance the organization uses internally or recommends, concerning SFDM. Identified resources were checked for references to other potential materials.

The second strategy involved customized Google searches for resources published on the internet using various combinations of key search terms, for example ‘supported decision-making guidance’ or ‘decision-making support guidance’.43 This strategy identified relevant guidance produced by organizations that were not included in the first search strategy. This approach returned large numbers of potentially relevant resources, for example, searching ‘supported decision-making guidance England’ returns over 12,000 results. This strategy therefore involved some reliance on Google’s relevancy ranking.44 The sample was judged adequate when the search strategy reached saturation, no longer returning new, relevant materials. Relevant resources were checked for references to other potential materials.

The follow-up search and screening activity again involved two strategies. A targeted strategy returned to the organizations that published resources identified in the initial search, seeking updated or new guidance. The second strategy repeated the customized Google searches for new resources or any that were not previously identified.

C. Analysis

Identified resources were read to make an initial assessment of the content, and the sample was refined using the eligibility criteria (Table 1).45 The resulting guidance was analysed to identify: (i) intended audience; (ii) identified features of the decision-maker (the person being supported); (iii) type(s) of decisions being supported; (iv) recommendations for how to practice SFDM; and (v) references to domestic or international law or related documents, for example, codes of practice or general comments.

IV. RESULTS

The combined search strategy and eligibility test yielded 40 resources (Table 2) containing relevant guidance. Due to the pragmatic methodology, these resources provide an indicative rather than an exhaustive picture of relevant guidance in England.

Three pieces of guidance were commonly pointed to when target organizations were consulted about the guidance they use or recommend: the MCA Code of Practice (MCA Code),46 the National Institute for Health and Care Excellence (NICE) guideline on decision-making and mental capacity,47 and a guide produced by Paradigm.48 The first two of these documents supplement the MCA. All organizations advising or representing practitioners cited these documents as the primary guidance in relation to SFDM. Paradigm is a consultancy, training, and development organization promoting person-centred approaches, particularly for people with a learning disability or autism.

The Paradigm guide was updated in 2023 and only this version was included in the analysis.49 A revised draft of the MCA Code was released in 2022,50 though the analysis includes only the MCA Code,51 as the draft has no legal status. The draft MCA Code is commented on in the discussion.

A. Intended audience

Most of the resources (36 of 40; 90 per cent) were aimed at people providing support, including those involved in relevant training, planning, policy, commissioning, or the practice of support. Four resources (10 per cent) were aimed at decision-makers (people being supported). Of these, three were aimed at any adult who may need support in decision-making, and one was for adults with a learning disability. Three resources (7.5 per cent) were for third-party professionals who may be involved in enacting supported decisions (eg, those working in banks, healthcare, or the criminal justice system). In most cases, the guidance was intended for just one of these audiences, but a small number of documents were for a combination, for example, anyone providing support and banking sector staff.

Among the guidance aimed at those providing support, six resources (15 per cent), including the MCA Code,52 NICE,53 and Paradigm54 documents, did not specify the role of the support provider. However, the majority of resources for those providing support were aimed at people in specified roles, which included: healthcare professionals (10; 25 per cent), social care practitioners (10; 25 per cent), family or friends (9; 22.5 per cent), managers or commissioners (6; 15 per cent), carers (5; 12.5 per cent), advocates (3; 7.5 per cent), psychologists (2; 5 per cent), social workers (1; 2.5 per cent), those providing training for supporters (1; 2.5 per cent), and researchers (1; 2.5 per cent). Many of these resources were for support providers across a number of roles, for example, for healthcare and social care practitioners.

B. Decision-maker (person being supported)

The majority of resources (27; 67.5 per cent) did not specify a particular disability or medical condition in connection with the decision-maker’s need for SFDM. This was the approach taken in the MCA Code,55 NICE,56 and Paradigm57 documents, though Paradigm as an organization has a focus on people with learning disabilities or autism.

Thirteen resources were about SFDM for a more circumscribed group of decision-makers: people with learning disabilities (6, 15 per cent), profound and multiple learning disabilities (2; 5 per cent), autistic people (2; 5 per cent), people with dementia (2; 5 per cent), Down’s syndrome (1; 2.5 per cent), brain injury (1; 2.5 per cent), and communication difficulties (1; 2.5 per cent). Two documents concerned support relevant for more than one specified disability, combining learning disabilities and autism.

C. Types of decisions

The majority of resources (30; 75 per cent), including the MCA Code,58 NICE,59 and Paradigm60 guidance, took a generic approach in terms of the nature of the decisions being supported.

A quarter of the resources concerned support for a specified type of decision, which included financial decisions (3; 7.5 per cent), medical decisions (3; 7.5 per cent), sexual relations (1; 2.5 per cent), contraception and sexual health (1; 2.5 per cent), participation in research (1; 2.5 per cent), and planning for the future (1; 2.5 per cent).

D. Recommendations for the practice of SFDM

The findings about advice for SFDM practice summarized here focus on 36 resources that included clearly stated recommendations. Four other resources provided practical advice in the form of case studies or examples of SFDM. All are included in the discussion of practical recommendations below.

The advice about how to support decision-making fell into two clusters. A core cluster of commonly included forms of support covered: ensuring that information is provided in a format that is accessible for the person (30 of 36 resources; 88.2 per cent); facilitating the person’s ability to communicate, for example, using communication tools or interpreting body language (28; 77.8 per cent); involving others, for example, people who know the person well or relevant professionals (26; 72.2 per cent); the timing of the decision, for example, considering when the person will be most alert or whether the decision can be delayed (19; 52.8 per cent); and thinking about the best environment for the person to make this decision, for example, where they will feel most comfortable or be free of distractions (19; 52.8 per cent).

All these forms of support are included in the MCA Code61 and the guidance from NICE62 and Paradigm,63 though in the NICE guidance, support relating to the environment only features in the definition of ‘practicable steps’64 rather than the main section on supporting decision-making.

A cluster of less common practical recommendations was found in 10 or fewer resources. These forms of support included: allowing time for reflection (10; 27.8 per cent); getting to know the person (6; 16.7 per cent); education or training, for example, in the context of decisions about sexual relationships (5; 13.9 per cent); consulting the person about the support they want (4; 11.1 per cent); really listening (4; 11.1 per cent); treating a relevant medical condition, for example, medical treatment or psychological therapy (4; 11.1 per cent); taking a written record of the support provided (4; 11.1 per cent); being mindful that others may undermine decision-making, for example, references to coercion or undue influence (3; 8.3 per cent); practice with the supporter, for example, doing the weekly shopping together (3; 8.3 per cent); revisiting a decision (3; 8.3 per cent); planning how decisions are made (2; 5.6 per cent); getting the right person as the supporter (1; 2.7 per cent); trying options out (1; 2.7 per cent); empathy for decision-making difficulties (1; 2.7 per cent); breaking down the decision (1; 2.7 per cent); addressing any negative effects of medication (1; 2.7 per cent); and considering the wider context of the decision (1; 2.7 per cent).

It was noteworthy that the recommendations to seek input from the decision-maker about the support they want, and to take a written record, are included in the NICE guidance65 but were found in few other resources. NICE guidance is generally accorded special legal significance in the hierarchy of clinical guidelines, in part due to the substantial development process that is generally involved.66 The authority of NICE guidance in the UK indicates the legal importance of these elements of SFDM in England, raising a question about their absence from resources published after 2018.

We note also that some guidance referred to practical mechanisms for ensuring that the decision-maker has the support they want and need, for example, financial passports (2 documents), health passports (1), communication passports (1), health action plans (1), or a workbook for planning support (1).

E. Legal foundations

Almost all the guidance (38; 95 per cent) cited the MCA, and this was often the only law referred to in the relevant sections of the resources. Some also referred to other legislation, including the Care Act 2014 (6; 15 per cent), Children and Families Act 2014 (2; 5 per cent), Sexual Offences Act 2003 (1; 2.5 per cent), and Equality Act 2010 (1; 2.5 per cent).

Only four resources referred to the CRPD (10 per cent), one being the guidance from Paradigm.67 The other three were guidance published by the Department of Health for independent advocates, on Providing Independent Advocacy under the Care Act’;68 an output of an international collaboration involving the English organization, CHANGE, on ‘Good and Promising Practice’ for those delivering training about Article 1269; and an MCA ‘Ethics Toolkit’ produced by the British Medical Association.70 The previous version of the British Medical Association’s MCA toolkit did not cite the CRPD.71 Publication of the current toolkit therefore marks a potentially significant development in thinking about SFDM and its legal foundations in England.

V. DISCUSSION

The review found that while many organizations in England recommend using or themselves use three primary sources of guidance—the MCA Code72 and documents produced by NICE73 and Paradigm74—some have produced their own. The presence of local or in-house guidance alongside national guidance is also found in other contexts.75 The identified local or in-house SFDM guidance tended to be narrower in scope when compared to the three primary pieces of guidance, in terms of intended audience, the decision-maker, or the kinds of decisions being supported. This may indicate a view at the local level, that the primary sources of guidance do not provide sufficiently fine-grained or relevant advice for the implementation of SFDM in many concrete situations. This suggestion resonates with a study of clinical guidance for paediatric asthma in the UK and the Netherlands, which concluded that one ‘driving factor in the widespread development and use of local guidelines … may be the inability of national guidance to achieve sufficient clarity to be used effectively by clinicians’.76

This finding points to the potential value of further developing a primary source of guidance to better reflect the multifaceted nature of SFDM in practice. The findings discussed below point to the importance of recognizing the distinctive support needs linked to particular disabilities and conditions; the different barriers to SFDM associated with different kinds of decision and kinds of relationship between supporter and decision-maker; and the need for tailored forms of advice for decision-makers, support providers, and third parties. Presenting a more nuanced account of SFDM in a widely used and authoritative resource, or set of resources, would minimize the need for policy-makers or practitioners to piece together the advice they need at the local level. However, any further development of resources must be mindful that healthcare staff report feeling ‘overwhelmed’ by the volume of guidance relevant to their practice,77 and that this is said to undermine its usefulness.78

The following subsections discuss the findings set out in the results section.

A. Audience

The review’s identification of separate guidance for decision-makers, support providers, and third parties is also seen in other jurisdictions. In New South Wales, Australia, for example, separate handbooks have been produced for decision-makers, supporters, and facilitators, who play a role that involves being a mentor to decision-makers and supporters.79 The handbook for decision-makers outlines their rights, responsibilities, and what they can expect, whereas the documents aimed at supporters and facilitators outline their respective roles, duties, and the challenges they might face.

Guidance for facilitators was not identified in this review, indicating that this role is not a prominent feature of SFDM as it is currently practiced in England. This highlights a key difference in the implementation of SFDM in England compared to Australian models, in which facilitators play a central role.80 Canadian guidance also refers to the role of planning facilitators in delivering ‘core functions’ of community-led SFDM initiatives,81 and the role of facilitator is recognized to some extent in US initiatives.82 This finding prompts a question about whether the role of facilitator is a dimension of SFDM practice that should be developed in England.

Most of the guidance identified in this review was aimed at support providers. While the MCA Code83 and documents produced by NICE84 and Paradigm85 were not aimed at providers in specific roles, many other documents were, for example, for medical professionals or family members. One potential advantage of guidance that is sensitive to the supporter’s role is indicated by an Australian study that found the most common barrier to SFDM was, ‘tensions associated with the role of the supporter and consequent conflict with others involved in the decision-maker’s life’.86 This indicates the importance of guidance acknowledging that the barriers faced by supporters may depend on their relationship with the decision-maker, for example, whether they are a parent, child, friend, medical professional, or paid advocate.

A small number of the identified resources (4; 10 per cent) were aimed at decision-makers (people being supported), with three designed for any adult who may need support in decision-making and one for adults with learning disabilities. Guidance of this kind seems crucial for upholding the values that motivate SFDM, such as inclusion and independence. Empirical work has underlined the importance of informing mental health service users of their rights and the decision-making support they should expect.87 The guidance designed for decision-makers identified in this review provided distinctive advice on whose support the decision-maker can enlist to make important decisions,88 their right to open a bank account, and how they should expect to be treated during the process.89

A similar proportion of guidance in the sample (3; 7.5 per cent) was aimed at third parties who may be involved in enacting supported decisions, for example, banking or healthcare staff. Third parties play a crucial role in the recognition of decisions made with support, and they require distinctive advice about what obligation they have to involve a supporter, and recognizing when supported decisions should, and should not, be acted upon. A Canadian study found that third parties were ‘often not comfortable with’ SFDM arrangements, and the study recommended that materials be developed specifically for third-party healthcare providers and financial institutions.90

Overall, the findings regarding audience suggest that SFDM in England might be promoted through the development of authoritative guidance for decision-makers and third parties. The question of whether the facilitator role in SFDM is being overlooked in this jurisdiction should also be explored.

B. Decision-maker (person being supported)

While the majority of the identified resources, including the MCA Code,91 NICE,92 and Paradigm93 documents, provided guidance relevant for anyone in need of SFDM, approximately one-third of the resources (32.5 per cent) were about support for people with specified disabilities or medical conditions, the most common being learning disabilities.

One potential justification for SFDM guidance focused on decision-makers with particular disabilities or conditions comes from research that suggests different support strategies may be useful for different disabilities or conditions.94 However, for many people needing support, the difficulties they face will be connected to more than one disability or condition. For example, there are high rates of mental ill-health among people with learning disabilities,95 dementia,96 and autistic people.97 The MCA Code recognizes that some organizations have developed SFDM materials for ‘specific conditions, such as Alzheimer’s disease or profound learning disability’.98 However, the inclusion of some of this tailored advice in a primary source of guidance would, arguably, make these resources more useful in practice.

The prominence in the sample of guidance about supporting people with a learning disability is consistent with a significant focus on this group in SFDM research.99 However, there is a growing body of relevant research on decision-making in other groups, including people with dementia,100 acquired brain injury,101 autistic people,102 and those with mental health conditions.103 This indicates the need for guidance to draw widely on relevant research in connection with a range of disabilities and conditions.

It was noteworthy that the review did not identify any guidance with a dedicated or primary focus on SFDM in the context of mental ill health, while other jurisdictions have seen developments in this area.104 The Mental Welfare Commission for Scotland has a detailed guide on SFDM, which includes mental health conditions.105 In Victoria, Australia, the Mental Health and Wellbeing Act 2022 Handbook elaborates on the legislation’s ‘Supported decision making principle’ referring to support measures around information provision, communication, and advance statements.106 Predating this guidance, the Victorian branch of the Royal Australian and New Zealand College of Psychiatrists published a position paper on ‘Enabling supported decision making’.107 More recently, the Mental Health Foundation of New Zealand published a position statement on ‘Embedding supported decision-making across Aotearoa’s mental health system’.108 However, recent guidance from NHS England on acute inpatient mental health care for adults includes ‘Personalised care, including shared decision-making’109 as one of its four key principles but does not focus on supported decision-making among its comprehensive recommendations.

Research on SFDM in connection with mental ill health has highlighted some challenges in this area, particularly concerning the trust relationships that are necessary.110 Nonetheless, it appears that the implementation of SFDM in mental health care is moving ahead in other jurisdictions.111

C. Decisions being supported

While most of the identified guidance, including the MCA Code112 and documents from NICE113 and Paradigm,114 took a generic approach in terms of the decisions being supported, approximately a quarter of the sample (27.5 per cent) focused on narrower spheres of decision-making such as healthcare or financial decisions.

One argument in favour of the narrower approach might appeal to the idea that different kinds of decisions require different forms of support. Research by Harding and Taşcıoğlu in England and Wales found that legally significant decisions, in contrast with more everyday decisions, often involve a more complex decision-making process.115 Care professionals in their research identified three main approaches to supporting everyday decisions, involving narrowing down choices, providing context, and establishing structures to help execute decisions.116 In contrast, complex decisions were found to require more advanced strategies such as participation in goal setting, exploring alternative choices, making information accessible, creating a power of attorney, advance planning, and involving an independent advocate.117 The research concluded that the advice on SFDM in the MCA Code118 is not sufficient to support the full range of personal decisions.119

A more decision-specific approach to providing guidance is also able to highlight the barriers to SFDM associated with particular types of decisions. For example, health and social care practitioners cite concerns about personal liability when supporting someone to make a decision that could result in injury or abuse.120 Harding and Taşcıoğlu found that decisions about intimate relationships and sexuality were not well supported due to apprehensions about abuse.121

This research points to the importance of including decision-specific nuance in SFDM guidance, including advice on how to handle the risks associated with particular kinds of decisions. In guidance that aims to provide a widely applicable model of SFDM, recommendations designed for any decision will be a useful starting point. However, more fine-grained advice appears to be crucial for ensuring that the support provided is appropriate for the decision and for addressing the barriers that may be present.

D. Recommendations for practice: the elements of support for decision-making

A key observation about the practical advice found in the sample was its variability. Among the cluster of ways to support decision-making that were commonly included, only three—making information accessible, facilitating communication, and involving others—were found in a significant majority of the guidance. All other recommendations were found in approximately half or fewer of the resources. It was noted above that some elements included in the NICE guidance, for example, seeking input from the person about the support they want, were found in a few of the other identified documents.122 This raises a question about the evidence or authority on which SFDM guidance is being based, and is a finding that resonates with clinical practice guidelines research in the UK. Koldeweij and colleagues have raised concerns about variability between locally produced clinical guidance documents and divergence from NICE guidelines.123 The authors acknowledge that some adaptation of national clinical guidelines may be necessary in locally produced documents due to factors such as the needs, resources, and expertise available in the local context. Such factors may also play a part in explaining the variability of advice found in the SFDM guidance, along with differences related to, for example, a focus on a particular disability or condition in some of the identified resources. Nonetheless, Koldeweij and others caution that, ‘variability in the content and quality of local guidelines may contribute to variation of care more broadly and [may] potentially undermine healthcare quality’,124 and this concern also seems relevant in the context of SFDM.

Overall, the practical advice found in the sample reflected several strategies for supporting complex decisions reported by care professionals in England and Wales in the work of Harding and Taşcıoğlu, particularly around making information accessible and involving others.125 However, other dimensions of SFDM reported by care professionals, such as participation in goal setting and exploring alternative choices, were not prominent in the identified guidance. This raises a question about whether important elements of SFDM are not included in the existing guidance, a concern previously identified by Harding and Taşcıoğlu in relation to the MCA Code.126

The La Trobe SFDM Practice Framework, developed by Bigby and Douglas,127 provides a useful international reference point for reflecting on the advice found in the sample. The framework is an established model for SFDM in Australia, based on a body of empirical work.128 It takes a multi-layered approach involving three guiding principles, seven steps for supporting any decision, and five clusters of support strategies that can be used when appropriate. The principles emphasize, ‘Commitment: to the person and their rights’, ‘Orchestration: of others involved in the person’s life’, and ‘Reflection and Review: on your own values and influence in support’.129 The steps move through, ‘Knowing the person’, ‘Identifying and describing the decision’, ‘Understanding the person’s will and preference for the decision’, ‘Refining the decision and taking account of constraints’, ‘Deciding whether a self-generated, shared or substituted decision is to be made’, ‘Reaching the decision and associated decisions’, to ‘Implementing the decision and seeking out advocates if necessary’.130 Lastly, the clusters of strategies concern, ‘Attention to communication’, ‘Education about consequences and practicalities’, ‘Listening and engaging to ensure that all options are considered’, ‘Creating opportunities’, and ‘Breaking things down’.131

This model provides a richer account of how to implement SFDM than was found in any of the guidance identified in this review. Its foundation in the CRPD132 also distinguishes this framework from much of the identified English guidance.133

Four of the framework’s five clusters of practical strategy were found in the English guidance: those about communication, education, listening, and breaking things down. The strategy that was not well reflected in the identified documents concerned creating opportunities. In the La Trobe framework, this strategy is described as including, ‘Active reframing that invites participation—providing a sounding board—acknowledging low expectations and building confidence—testing options—introducing and nurturing the seeds of ideas—bringing in others to trail a situation—creating distance to enable greater autonomy’.134 One observation about these forms of support is that some, for example, building confidence and nurturing the seeds of ideas, seem to require a long-term support relationship. Department of Health guidance for Independent Advocates endorses this way of envisaging SFDM in England, stating that, ‘Supported decision making is about much more than helping people to make one off decisions, or providing support during a mental capacity assessment. It is about a holistic system of support that places the person at the centre of decision making’.135 Yet many of the identified documents envisage SFDM in a more limited way that is linked to individual decisions and capacity assessments.

A related observation concerns the purpose of SFDM, as reflected in the sample. A primary focus on providing accessible information and facilitating communication sees the purpose of support as enabling decision-making within the scope of the person’s existing abilities and limitations. However, among the less commonly found recommendations was advice that understands the purpose of support in a more developmental way. For example, four documents included decision-relevant education or training as a form of support, and three included the treatment (medical or psychological) of a relevant condition. Practicing decision-making with the supporter also featured in three documents. Guidance that includes these forms of support sees the decision-maker as having the potential to grow their capacities for independent decision-making agency. This perspective is illustrated in a document produced by the British Psychological Society, which included a case study that described using role play, with the outcome that, ‘Over time, observation indicated that [the person] was able to utilise the skills in novel situations without prompting’.136

Although these developmental elements of SFDM were not commonly found in the sample documents, some are included in the MCA Code and NICE guidance.137 This indicates the importance, from a legal perspective in England, of understanding support as a developmental process, not merely one that works within the decision-maker’s existing scope for exercising decision-making agency with support.

E. Legal foundations

Most of the identified resources referred primarily, or solely, to the MCA, while only four referred to the CRPD. This finding resonates with Harding and Taşcıoğlu’s research, which found that while principle 3 of the MCA, which concerns SFDM, is ‘well embedded in the professional awareness’ of care practitioners in England and Wales, ‘few had heard of’ the CRPD.138 Of the three primary sources of guidance, only the Paradigm document refers to the CRPD, stating that, ‘Supported Decision-Making is a basic human right that is highlighted in the “UN Convention on the Rights of Persons with Disabilities” and is part of the Mental Capacity Act 2005 and The Care Act 2014’.139 The linking of SFDM to the CRPD in recent guidance from the British Medical Association seems likely to mark a significant development in this area, due to the legal weight it can be given.140 Nonetheless, its recommendations are framed in terms of how ‘doctors can draw on aspects of the CRPD’s supported decision-making approach to complement their obligations under the support principle in the MCA’.141

The dominance of the MCA as the legal foundation of SFDM in the identified guidance is no doubt explained by the legally binding status of the MCA in England, not shared by the CRPD, along with the apparent tensions between the MCA and CRPD conceptions of SFDM.142 In its initial report on the United Kingdom of Great Britain and Northern Ireland, the UN treaty body for the CRPD expressed concerns about, ‘legislation restricting the legal capacity of persons with disabilities on the basis of actual or perceived impairment … the prevalence of substituted decision-making in legislation and practice, and the lack of full recognition of the right to individualised supported decision-making that fully respects the autonomy, will and preferences of persons with disabilities’.143 These observations raise questions about the prospect of realizing a CRPD-aligned approach to SFDM in England, due to the presence of MCA.

The framing of SFDM primarily in connection with the MCA, as a means to enable mental capacity, provides an indication of how those involved in SFDM in England are generally encouraged to understand its purpose. The focus is on facilitating the person’s decision-making abilities, rather than the legal recognition of their will and preferences. This difference has significant implications because, for example, a focus on will and preferences might allow the person being supported to retain recognition as the decision-maker despite one or more dimensions of mental capacity being provided by the supporter. This model seems incompatible with the understanding of SFDM linked to the MCA, where the mental capacities needed to make a decision must be attributed to the person being supported, or they will not be recognized as the decision-maker. On this understanding, the limits of SFDM are set by the extent to which the person’s own mental capacities can be enabled. If they are unable to satisfy the mental capacity requirements, the possibilities for SFDM are exhausted, and the decision will be made by others in their best interests.144

Given these tensions, it may be that policymakers have tended to take an approach that avoids this complexity in order to provide clear recommendations. However, the UK’s commitment to the CRPD places an obligation on policymakers to explore whether practice can move towards the understanding of SFDM envisaged in the CRPD. Recommending such an approach, the Department of Health guidance acknowledges that, ‘Advocates are obliged to work within the MCA framework under domestic law’, but that ‘the MCA and the Care Act contain important tools that can be used by advocates to promote the empowering ethos of the CRPD’, and also that the ‘CRPD pushes us to move toward a new framework where people are supported to be their own decision-makers’.145

The recent British Medical Association guidance takes a more cautious approach, indicating that where there ‘may’146 be tensions between the MCA and CRPD around SFDM, a resolution is already in play. Its section on ‘supported decision making’ follows a section on best interests decisions and observes that a will and preferences approach ‘now guides decisions in the Court of Protection’.147 It goes on to explain that the focus is ‘increasingly on determining what the individual would want—and consider to be in their best interests—in the circumstances, rather than what others believe objectively to be in their best interests’.148 On this approach, the support required by Article 12 may be realized in the context of some substituted decisions under the MCA, with the crucial element of a CRPD-aligned approach to SFDM understood to be its emphasis on foregrounding the person’s perspective, rather than who makes the decision.

This way of envisaging the implementation of Article 12 has been recognized in the legal commentary, with Bartlett observing that although this arrangement would ‘be triggered by incapacity, and to that extent would be inconsistent with the CRPD as the Committee articulates it, … it might be coherently argued that this sort of agency relationship would be within the spirit of the CRPD’.149 This form of resolution nonetheless raises concerns that the ‘transformative potential of the CRPD will not be realised’ if its implementation replicates existing binaries such as the ‘distinction between capacity and incapacity’.150 Harding and Taşcıoğlu argue on the basis of their work, that ‘the MCA’s decision-specific approach, underpinned by the functional assessment of capacity, allows and indeed facilitates the drive towards substitute decision-making for more complex matters’.151 Similarly, the Australian Royal Commission report rejects capacity-based models on the basis that they perpetuate the idea that SFDM is ‘something that is done “up to a point”’ demarcated by a mental capacity threshold.152

Another consequence of this proposed resolution becomes clear in the BMA guidance. Both the Australian Royal Commission report153 and BMA guidance reject a strict binary between supported and substituted decision-making, with substituted decisions counting as instances of SFDM in alignment with the CRPD when they promote the legal recognition of the person’s will and preferences. Evidence gathered by Bigby and colleagues suggests that this way of understanding SFDM may better reflect the reality of having and providing support in decision-making.154 However, the presence of the MCA in England and Wales means that its implementation in this jurisdiction generates a dualism in the purpose and practice of support. As described in the BMA guidance, where a person may retain mental capacity, SFDM is about enabling their decision-making abilities through practices including the involvement of an advocate, communication support, and considering the timing of the decision or the impact of medication.155 In situations where a person is unable to meet this standard, recommendations for SFDM include exploring with the person what support may be helpful, identifying the person’s wishes and feelings, maximizing the person’s involvement, and facilitating the involvement of others who are close to the person.156 On this side of the capacity threshold, the purpose of SFDM is less clear, but the focus has shifted from supporting the person’s decision-making abilities to involving the person and seeking an understanding of the decision from their perspective. This dualism is not a feature of the Australian Royal Commission report model, in which capacity-based approaches are rejected in favour of a will and preferences approach across all SFDM.157

The question that comes into focus is whether this dualism in the purpose and practice of SFDM is problematic, from a practical, legal, or ethical perspective. This question adds to, and provides a more concrete context for, the above concerns raised by others, and may also be relevant in other jurisdictions with similar mental capacity law.

VI. CONCLUSION

The aim of this pragmatic review was to provide insight into how the practice of SFDM is developing in England, as reflected in a sample of relevant guidance. A key subsidiary aim was to explore the legal foundation of the guidance given the identified tensions and uncertainties around the understandings of SFDM linked to the MCA and CRPD. It was also anticipated that the findings may identify gaps or weaknesses in current guidance, indicating areas for the development of SFDM practice in England.

The review only identified limited guidance for decision-makers (those being supported), or for third parties. In contrast with some other jurisdictions, no guidance for the role of support facilitators or guidance specifically relating to decisions by people with mental health diagnoses, was identified. These are therefore recommended as focal points for those working on the development of SFDM policy and practice in England.

Regarding recommendations for the practice of SFDM, the review found a great deal of variability. Where elements of the MCA Code or NICE guidance were not included in other identified documents, a question is raised about the basis and authority of that guidance. However, some of the variability in the sample likely reflects relevant differences between the many possible contexts for SFDM. It may also be linked to a lack of consensus or clarity about fundamental issues concerning its proper scope and purpose. To what degree is SFDM about enabling the person’s decision-making capacities or realizing their will and preferences? Is it appropriate for supporters to play a substantial role in the deliberative process, in effect providing some decision-making abilities that may be necessary? Does SFDM extend to more developmental forms of support?

Some of these unsettled questions are linked to the issue of legal foundations. Most of the identified guidance reflected an exclusive alignment with an understanding of SFDM linked to the MCA, as a means to enable the decision-maker’s mental capacity. This finding is understandable due to the legally binding requirements of the MCA in England, combined with the apparent tensions between the MCA and CRPD approaches to SFDM. Nonetheless, the UK’s commitment to the CRPD places an obligation on policymakers to consider how SFDM practice under the MCA might be developed in alignment with the CRPD. Some recent developments propose a resolution that rejects a strict binary between substituted and supported decisions, envisaging a CRPD-aligned approach to SFDM realized in the context of some substituted decisions. However, applying this approach in England and Wales generates a dualistic model in which SFDM diverges, in purpose and practice, on either side of the MCA’s capacity threshold. This calls for evaluation from a practical, legal, and ethical perspective.

This complexity, in the diversity of SFDM contexts and uncertainties linked to the legal foundations of SFDM, presents a challenge for generating guidance. The analysis suggests that the currently fragmented state of SFDM guidance in England could be addressed through the further development of an authoritative source of guidance to present a more multifaceted model of SFDM. Important dimensions would include insights from SFDM research about the support needs associated with certain decisions, disabilities, and conditions, as well as the barriers associated with particular kinds of decision and support relationship.

It may also be helpful for guidance to more widely acknowledge tensions in the legal foundations of SFDM, as these may resonate with dilemmas faced in practice. The British Association of Social Workers recommends that those working with adults with intellectual disabilities should, ‘[k]now about the historical, theoretical, and ethical contexts of mental capacity practice, supported decision-making, and human rights’.158 To be meaningful, what’s required is not just referring to the empowering ethos of the CRPD, but recognizing the challenging questions it raises about SFDM.