Dataset Information

Making healthcare decisions in a person's best interests when they lack capacity: clinical guidance based on a review of evidence.

ABSTRACT:

Objective

To clarify the concept of best interests, setting out how they should be ascertained and used to make healthcare decisions for patients who lack the mental capacity to make decisions.

Context

The legal framework is the Mental Capacity Act (MCA) 2005, which applies to England and Wales.

Theory

Unless there is a valid and applicable Advance Decision, an appointed decision-maker needs to decide for those without capacity. This may be someone appointed by the patient through a Lasting Power of Attorney, or a Deputy appointed by the court. Otherwise the decision-maker is usually the responsible clinician. Different approaches exist to surrogate decision-making cross-nationally. In England and Wales, decision-making is governed by the MCA 2005, which uses a person-centred, flexible best interests (substituted interests) approach.

Observations

The MCA is often not followed in healthcare settings, despite widespread mandatory training. The possible reasons include its focus on single decisions, when multiple decisions are made daily, the potential time involved and lack of clarity about who is the responsible decision-maker.

Solution

One solution is to decide a strategic policy to cover more significant (usually health-related) decisions and to separate these from day-to-day relational decisions covering care and activities. Once persistent lack of capacity is confirmed, an early meeting should be arranged with family and friends, to start a process of sharing information about the patient's medical condition and their values, wishes, feelings and beliefs with a view to making timely treatment decisions in the patient's best interests.

SUBMITTER: Wade DT

PROVIDER: S-EPMC6745603 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Making healthcare decisions in a person's best interests when they lack capacity: clinical guidance based on a review of evidence.

Wade Derick T DT Kitzinger Celia C

Clinical rehabilitation 20190606 10

<h4>Objective</h4>To clarify the concept of best interests, setting out how they should be ascertained and used to make healthcare decisions for patients who lack the mental capacity to make decisions.<h4>Context</h4>The legal framework is the Mental Capacity Act (MCA) 2005, which applies to England and Wales.<h4>Theory</h4>Unless there is a valid and applicable Advance Decision, an appointed decision-maker needs to decide for those without capacity. This may be someone appointed by the patient ...[more]

PMID: 31169031

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Project description:BackgroundBest interests is a ubiquitous principle in medical policy and practice, informing the treatment of both children and adults. Yet theory underlying the concept of best interests is unclear and rarely articulated. This paper examines bioethical literature for theoretical accounts of best interests to gain a better sense of the meanings and underlying philosophy that structure understandings.MethodsA scoping review of was undertaken. Following a literature search, 57 sources were selected and analysed using the thematic method.ResultsThree themes emerged. The first placed best interests within the structure of wider theory, noting relationships with consequentialism, deontology, prudential value theory, rights and political philosophy. The second mapped a typology of processes of decision-making, among which best interests was ambiguously positioned. It further indicated factors that informed best interests decision-making, primarily preferences, dignity and quality of life. The final theme considered best interests from a relational perspective.ConclusionsCharacterisation of best interests as strictly paternalist and consequentialist is questionable: while accounts often suggested a consequentialist basis for best interests, arguments appeared philosophically weak. Deontological accounts, found in law and Kantianism, and theories of political liberalism influenced accounts of best interests, with accounts often associating best interests with negative patient preferences (i.e. individual refusals). There was much more emphasis on negative interests than positive interests. Besides preference, factors like dignity and quality of life were held to inform best interests decisions, but generally were weakly defined. To the extent that preferences were unable to inform decision making, decisions were either made by proxy authority or by an intersubjective process of diffuse authority. Differing approaches reflect bifurcations in liberal philosophy between new liberalism and neo-liberalism. Although neither account of authority appears dominant, bias to negative interests suggests that bioethical debate tends to reflect the widespread ascendancy of neo-liberalism. This attitude was underscored by the way relational accounts converged on private familial authority. The visible connections to theory suggest that best interests is underpinned by socio-political trends that may set up frictions with practice. How practice negotiates these frictions remains a key question.

Project description:ObjectiveTo identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers.DesignQualitative study to delineate decision areas through focus groups and complexity of decision making in individual interviews.SettingCommunity settings in London.Participants43 family carers of people with dementia in focus groups and 46 carers who had already made such decisions in individual interviews.ResultsFamily carers identified five core problematic areas of decision making: accessing dementia related health and social services; care homes; legal-financial matters; non-dementia related health care; and making plans for the person with dementia if the carer became too ill to care for them. They highlighted the difficulties in making proxy decisions, especially against active resistance, and their altered role of patient manager while still a family member. Families devised strategies to gain agreement in order to ensure that the person with dementia retained dignity.ConclusionsThe following strategies helped with implementation of decisions: introducing change slowly; organising legal changes for the carer as well as the patient; involving a professional to persuade the patient to accept services; and emphasising that services optimised, not impeded, independence. To access services, carers made patients' general practice appointments, accompanied them to the surgery, pointed out symptoms, gained permission to receive confidential information, asked for referral to specialist services, and used professionals' authority to gain patients' agreement. End of life decisions were particularly difficult. They were helped by knowledge of the person with dementia's previous views, clear prognostic information, and family support. Information sheets to help carers to overcome barriers to proxy decision making have been developed; their impact in practice has yet to be evaluated.

Project description:BackgroundWe know that patient care can be improved by implementing evidence-based innovations and applying research findings linked to good practice. Successfully implementing innovations in complex organisations, such as the UK's National Health Service (NHS), is often challenging as multiple contextual dynamics mediate the process. Research studies have explored the challenges of introducing innovations into healthcare settings and have contributed to a better understanding of why potentially useful innovations are not always implemented in practice, even if backed by strong evidence. Mediating factors include health policy and health system influences, organisational factors, and individual and professional attitudes, including decision makers' perceptions of innovation evidence. There has been limited research on how different forms of evidence are accessed and utilised by organisational decision makers during innovation adoption. We also know little about how diverse healthcare professionals (clinicians, administrators) make sense of evidence and how this collective sensemaking mediates the uptake of innovations.MethodsThe study will involve nine comparative case study sites of acute care organisations grouped into three regional clusters across England. Each of the purposefully selected sites represents a variety of trust types and organisational contexts. We will use qualitative methods, in-depth interviews, observation of key meetings, and systematic analysis of relevant secondary data to understand the rationale and challenges involved in sourcing and utilising innovation evidence in the empirical setting of infection prevention and control. We will use theories of innovation adoption and sensemaking in organisations to interpret the data. The research will provide lessons for the uptake and continuous use of innovations in the English and international health systems.DiscussionUnlike most innovation studies, which involve single-level analysis, our study will explore the innovation-adoption process at multiple embedded levels: micro (individual), meso (organisational), and macro (interorganisational). By comparing and contrasting across the nine sites, each with different organisational contexts, local networks, leadership styles, and different innovations considered for adoption, the findings of the study will have wide relevance. The research will produce actionable findings responding to the political and economic need for healthcare organisations to be innovation-ready.

Dataset Information

Making healthcare decisions in a person's best interests when they lack capacity: clinical guidance based on a review of evidence.

Objective

Context

Theory

Observations

Solution

Publications

Making healthcare decisions in a person's best interests when they lack capacity: clinical guidance based on a review of evidence.

Similar Datasets

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