Supported Decision-Making from Theory to Practice: Implementing the Right to Enjoy Legal Capacity

Harding, Rosie; Taşcıoğlu, Ezgi

doi:10.3390/soc8020025

Cited by 27 publications

(31 citation statements)

References 22 publications

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“…Many participants identified having a variety of choices in their life and it was noted by some that the opportunities to make choices had improved over the years. Generally, the opportunity to make decisions was considered to be a positive experience which resonates with the findings from Harding & Taşcıoğlu’s () study.…”

Section: Discussionsupporting

confidence: 65%

“…Other studies have also discussed the relationship between the individual and the supporter, particularly focusing on the individual's feeling of powerlessness if there was not a good working relationship between them (McDaid & Delaney, ; Jamieson, Theodore, & Raczka, ; People First (Scotland), ). Harding & Taşcıoğlu’s () qualitative study with people with intellectual disabilities in England reported a range of positive practice, especially for everyday decision‐making, although more difficult decisions were reported to be less well‐supported.…”

Section: Introductionmentioning

confidence: 99%

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Service users' experiences and views of support for decision‐making

Webb

Davidson

Edge³

et al. 2020

Health Soc Care Community

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This article presents the findings from a qualitative, participatory research project which explored how people with intellectual disabilities and/or mental health problems have, or have not been, supported to make their own decisions. The aim of the research is to help inform how supported decision‐making, as required by Article 12 of the UN Convention on the Rights of Persons with Disabilities, can be effectively operationalised. The project provides an overview of experiences of support as well as identifying which supports are valued. It was conducted between July 2017 and July 2018 and was a partnership between disabled people, service providers and a University. It involved peer researchers interviewing 41 people with mental health problems and/or intellectual disabilities, in community settings, about their experiences and views of support. The key findings include that decision‐making is a central aspect of people's lives. Participants discussed the positive role which decision‐making can have but also how it felt when they were not supported to make their own decisions. Participants said that there were three main things that make decision‐making harder: the type of decision; the role of other people; and what the outcome might be. Time was consistently identified as a very important factor. In terms of support, people said that they would like: practical support including more accessible information; emotional support including someone to talk to; and sometimes the options to choose from. There was very little mention of existing, more formal processes of support such as advance decisions or care planning. The peer researcher aspect of the project was valued by participants. The main implications of the research are for how support for decision‐making should be provided including the need for an individualised approach as the support needed varies across decisions, time and people.

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Section: Discussionsupporting

confidence: 65%

Section: Introductionmentioning

confidence: 99%

Service users' experiences and views of support for decision‐making

Webb

Davidson

Edge³

et al. 2020

Health Soc Care Community

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“…Assessment of mental capacity has become a key component of daily clinical practice [4,5]. Mental health legislation and medical ethics increasingly require physicians to empower patients to make decisions, and to respect the patient's wishes with regard to accepting or refusing therapy [4,6].…”

Section: Introductionmentioning

confidence: 99%

A meta-review of literature reviews assessing the capacity of patients with severe mental disorders to make decisions about their healthcare

et al. 2020

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Background: Determining the mental capacity of psychiatric patients for making healthcare related decisions is crucial in clinical practice. This meta-review of review articles comprehensively examines the current evidence on the capacity of patients with a mental illness to make medical care decisions. Methods: Systematic review of review articles following PRISMA recommendations. PubMed, Scopus, CINAHL and PsycInfo were electronically searched up to 31 January 2020. Free text searches and medical subject headings were combined to identify literature reviews and meta-analyses published in English, and summarising studies on the capacity of patients with serious mental illnesses to make healthcare and treatment related decisions, conducted in any clinical setting and with a quantitative synthesis of results. Publications were selected as per inclusion and exclusion criteria. The AMSTAR II tool was used to assess the quality of reviews. Results: Eleven publications were reviewed. Variability on methods across studies makes it difficult to precisely estimate the prevalence of decision-making capacity in patients with mental disorders. Nonetheless, up to threequarters of psychiatric patients, including individuals with serious illnesses such as schizophrenia or bipolar disorder may have capacity to make medical decisions in the context of their illness. Most evidence comes from studies conducted in the hospital setting; much less information exists on the healthcare decision making capacity of mental disorder patients while in the community. Stable psychiatric and non-psychiatric patients may have a similar capacity to make healthcare related decisions. Patients with a mental illness have capacity to judge risk-reward situations and to adequately decide about the important treatment outcomes. Different symptoms may impair different domains of the decisional capacity of psychotic patients. Decisional capacity impairments in psychotic patients are temporal, identifiable, and responsive to interventions directed towards simplifying information, encouraging training and shared decision making. The publications complied satisfactorily with the AMSTAR II critical domains.

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“…A person’s autonomy, according to person-centered care, relies more on his or her relational and social context than what is proposed in individualist- and cognitive-based approaches to autonomy 24. Furthermore, next of kin, through so-called supported decision-making,25,26 may assist in increasing the autonomy of a person with cognitive impairment. Decision-making processes in person-centered care are characterized by a dynamic dialog between the patient, their next of kin, and health care personnel 27…”

Section: Introductionmentioning

confidence: 99%

<p>Significance of advance care planning in nursing homes: views from patients with cognitive impairment, their next of kin, health personnel, and managers</p>

Sævareid¹,

Førde²,

Thoresen³

et al. 2019

CIA

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Purpose: Advance care planning (ACP) performed by regular staff, which also includes patients with cognitive impairment and their next of kin, is scarcely studied. Thus, we planned an implementation study including key stakeholders (patients, next of kin, and health care personnel) using a whole-ward/system approach to ACP. We explored how they experienced ACP and its significance. Patients and methods: This qualitative study is part of a mixed-method implementation study of ACP. In four nursing homes, we did qualitative interviews and audio-recordings of meetings. We completed 20 individual semistructured interviews with participants soon after ACP conversations. The interviews included patients with cognitive impairment, their next of kin, and health care personnel. We also conducted four focus group interviews with staff and managers in the nursing homes and audio-recorded four network meetings with the project teams implementing ACP. Results: All participants appreciated taking part in ACP. Patients and next of kin focused more on the past and present than future treatment preferences. Still, ACP seemed to contribute to a stronger patient focus on end-of-life conversations. More generally, ACP seemed to contribute to valuable information for future decision-making, trusting relations, improved end-of-life communication, and saving time and resources. Conclusion: Safeguarding a strong patient focus on ACP and fostering a person-centered care culture in nursing home wards seem to be achievable through implementation of ACP that includes regular staff, patients with cognitive impairment, and their next of kin.

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Supported Decision-Making from Theory to Practice: Implementing the Right to Enjoy Legal Capacity

Cited by 27 publications

References 22 publications

Service users' experiences and views of support for decision‐making

Service users' experiences and views of support for decision‐making

A meta-review of literature reviews assessing the capacity of patients with severe mental disorders to make decisions about their healthcare

<p>Significance of advance care planning in nursing homes: views from patients with cognitive impairment, their next of kin, health personnel, and managers</p>

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