Dataset Information

Protocol for a scoping review to understand what is known about how GPs make decisions with, for and on behalf of patients who lack capacity.

ABSTRACT: INTRODUCTION:General Practitioners (GPs) and allied healthcare professionals working in primary care are regularly required to make decisions with, for and on behalf of patients who lack capacity. In England and Wales, these decisions are made for incapacitated adult patients under the Mental Capacity Act 2005, which primarily requires that decisions are made in the patient's 'best interests'. Regarding children, decisions are also made in their best interests but are done so under the Children Act 1989, which places paramount importance on the welfare of the child. Decisions for children are usually made by parents, but a GP may become involved if he or she feels a parent is not acting in the best interests of the child. Internationally, including elsewhere in the UK, different approaches are taken. We hypothesise that, despite the legislation and professional guidelines, there are many different approaches taken by GPs and allied healthcare professionals in England and Wales when making these complex decisions with, for and on behalf of patients who lack capacity. To better understand what is known about how these decisions are made, we plan to undertake a scoping review and directed content analysis of the literature. While the majority of decisions made in primary care are made by GPs, for completeness, this review will include all allied healthcare professionals working in primary care. METHODS AND ANALYSIS:To ensure a wide breadth of literature is captured, a scoping review will be undertaken as described by Arksey and O'Malley (2005). A five-stage approach will be taken when conducting this review: (1) identifying the research question; (2) identifying relevant papers; (3) study selection; (4) data extraction and (5) summarising and synthesis. The final stage will include a directed content analysis of the data to help establish the cross-cutting themes. ETHICS AND DISSEMINATION:The scoping review will be disseminated through conferences and peer-reviewed publications. This scoping review is the first (mapping) phase in a proposed larger study to explore how GPs make decisions with, for and on behalf of those who lack capacity. Qualitative research with GPs, patients and their families will follow, before all the results are synthesised using an 'empirical bioethics' methodology.

SUBMITTER: Ogden SJ

PROVIDER: S-EPMC7577062 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Protocol for a scoping review to understand what is known about how GPs make decisions with, for and on behalf of patients who lack capacity.

Ogden Simon Jack SJ Huxtable Richard R Ives Jonathan J

BMJ open 20201020 10

<h4>Introduction</h4>General Practitioners (GPs) and allied healthcare professionals working in primary care are regularly required to make decisions with, for and on behalf of patients who lack capacity. In England and Wales, these decisions are made for incapacitated adult patients under the Mental Capacity Act 2005, which primarily requires that decisions are made in the patient's 'best interests'. Regarding children, decisions are also made in their best interests but are done so under the C ...[more]

PMID: 33082190

Similar Datasets

Project description:IntroductionPatient records are often fragmented across organisations and departments in UK health and care services, often due to substandard information technology. However, although government policy in the UK and internationally is strongly pushing 'digital transformation', the evidence for the positive impact of electronic information systems on cost, quality and safety of healthcare is far from clear. In particular, the mechanisms by which information availability is translated into better decision-making are not well understood. We do not know when a full interorganisational record is more useful than a key information summary or an institutional record. In this paper, we describe our scoping review of how interorganisational electronic health records affect decision-making by hospital physicians and pharmacists.Methods and analysisThis scoping review will follow the Arksey and O'Malley (2005) methodology. The review has adopted sociotechnical systems thinking and the notion of distributed cognition as its guiding conceptual models. The UK National Institute for Health and Care Excellence Healthcare Databases Advanced Search will be used, as it incorporates key sources including PubMed, Medline, Embase, HMIC and Health Business Elite. A hand search will be conducted using the reference lists of included studies to identify additional relevant articles. A two-part study selection process will be used: (1) a title and abstract review and (2) full text review. During the first step, two researchers separately will review the citations yielded from the search to determine eligibility based on the defined inclusion and exclusion criteria. Related articles will be included if they are empirical studies that address how interorganisational records affect decision-making by hospital physicians and pharmacists.Ethics and disseminationThe results will be disseminated through stakeholder meetings, conference presentations and peer-reviewed publication. The data used are from publicly available secondary sources, so this study does not require ethical review.

Project description:Background and aim:Having decision making capacity is central to the exercise of autonomy in mental health care. The objective of this scoping review is to summarize the evidence on the capacity of people with schizophrenia or bipolar disorder to make decisions about their treatment in real life to support medical practice. Methods:Systematic search of observational studies on the assessment of capacity of patients with schizophrenia, psychosis, or bipolar disorder to make healthcare and treatment-related decisions, conducted in any clinical setting published up to January 31, 2020 was performed. Free text searches and medical subject headings in English were combined in PubMed, Scopus, CINAHL, and PsycInfo. Publications were selected as per inclusion and exclusion criteria. The Newcastle-Ottawa Scale for observational studies was used to assess the quality of publications. Results:Thirty publications were reviewed. According to the Newcastle-Ottawa Scale criteria, the publications reviewed were good quality. Findings showed that more than 70% of schizophrenia and schizoaffective disorder outpatients understood treatment options at the point of making decisions about their illness and healthcare. Patients treated voluntarily had considerably better scores for decisional capacity than those treated involuntarily. The burden of psychiatric symptoms could compromise decisional capacity temporarily. Decision-making capacity improved over time from admission to discharge from hospital, and with treatment among psychiatry inpatients. Schizophrenia and bipolar disorder patients could be as competent as nonpsychiatric individuals in making decisions about their treatments in everyday life. Conclusions:This scoping review provides a body of evidence for healthcare professionals in need of assessing the capacity of schizophrenia and bipolar disorder patients for autonomously decide about their treatments. Decisional capacity judgements should consider variations in capacity over time and be based on the type of decision to be made, the severity of symptoms, and the specific phase of the mental disorder.

Project description:BackgroundTrials involving adults who lack capacity to provide consent rely on proxy or surrogate decision-makers, usually a family member, to make decisions about participation. Interventions to enhance proxy decisions about trial participation are now being developed. However, a lack of standardised outcome measures limits evaluation of these interventions. The aim of this study was to establish an agreed standardised core outcome set (COS) for use when evaluating interventions to improve proxy decisions about trial participation.MethodsWe used established methods to develop the COS including a consensus study with key stakeholder groups comprising those who will use the COS in research (researchers and healthcare professionals) and patients or their representatives. Following a scoping review to identify candidate items, we used a modified two-round Delphi survey to achieve consensus on core outcomes, with equivocal items taken to a consensus meeting for discussion. The COS was finalised following an online consensus meeting in October 2020.ResultsA total of 28 UK stakeholders (5 researchers, 10 trialists, 3 patient/family representatives, 7 recruiters and 3 advisors/approvers) participated in the online Delphi survey to rank candidate items from the scoping review (n = 36) and additional items proposed by participants (n = 1). Items were broadly grouped into three categories: how family members make decisions, their experiences of making decisions, and the personal aspects that influence the decision. Following the Delphi survey, 27 items were included and ten items exhibited no consensus which required discussion at the consensus meeting. Sixteen participants attended the meeting, including additional patient/family representatives invited to increase representation from this key group (n = 2). We reached consensus for the inclusion of 28 outcome items, including one selected at the consensus meeting.ConclusionsThe study identified outcomes that should be measured as a minimum in all evaluations of interventions to enhance proxy decisions about trials. These relate to the process of decision-making, proxies' experience of decision-making, and factors that influence decision-making such as understanding. Further work with people with impairing conditions and their families is needed to explore their views about the COS and to identify appropriate outcome measures and timing of measurement.Trial registrationThe study is registered on the COMET database ( https://www.comet-initiative.org/Studies/Details/1409 ).

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:BackgroundDetermining 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.MethodsSystematic 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.ResultsEleven 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 three-quarters 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.ConclusionsWhilst impairments in decision-making capacity may exist, most patients with a severe mental disorder, such as schizophrenia or bipolar disorder are able to make rational decisions about their healthcare. Best practice strategies should incorporate interventions to help mentally ill patients grow into the voluntary and safe use of medications.

Dataset Information

Protocol for a scoping review to understand what is known about how GPs make decisions with, for and on behalf of patients who lack capacity.

Publications

Protocol for a scoping review to understand what is known about how GPs make decisions with, for and on behalf of patients who lack capacity.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets