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Understanding patients' experiences of the wish to hasten death: an updated and expanded systematic review and meta-ethnography.

ABSTRACT: OBJECTIVES:Patients with advanced disease sometimes express a wish to hasten death (WTHD). In 2012, we published a systematic review and meta-ethnography of qualitative studies examining the experience and meaning of this phenomenon. Since then, new studies eligible for inclusion have been reported, including in Europe, a region not previously featured, and specifically in countries with different legal frameworks for euthanasia and assisted suicide. The aim of the present study was to update our previous review by including new research and to conduct a new analysis of available data on this topic. SETTING:Eligible studies originated from Australia, Canada, China, Germany, The Netherlands, Switzerland, Thailand and USA. PARTICIPANTS:Studies of patients with life-threatening conditions that had expressed the WTHD. DESIGN:The search strategy combined subject terms with free-text searching of PubMed MEDLINE, Web of Science, CINAHL and PsycInfo. The qualitative synthesis followed the methodology described by Noblit and Hare, using the 'adding to and revising the original' model for updating a meta-ethnography, proposed by France et al. Quality assessment was done using the Critical Appraisal Skills Programme checklist. RESULTS:14 studies involving 255 participants with life-threatening illnesses were identified. Five themes emerged from the analysis: suffering (overarching theme), reasons for and meanings and functions of the WTHD and the experience of a timeline towards dying and death. In the context of advanced disease, the WTHD emerges as a reaction to physical, psychological, social and existential suffering, all of which impacts on the patient's sense of self, of dignity and meaning in life. CONCLUSIONS:The WTHD can hold different meanings for each individual-serving functions other than to communicate a genuine wish to die. Understanding the reasons for, and meanings and functions of, the WTHD is crucial for drawing up and implementing care plans to meet the needs of individual patients.

SUBMITTER: Rodriguez-Prat A

PROVIDER: S-EPMC5640102 | biostudies-literature | 2017 Sep

REPOSITORIES: biostudies-literature

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Understanding patients' experiences of the wish to hasten death: an updated and expanded systematic review and meta-ethnography.

Rodríguez-Prat Andrea A Balaguer Albert A Booth Andrew A Monforte-Royo Cristina C

BMJ open 20170929 9

<h4>Objectives</h4>Patients with advanced disease sometimes express a wish to hasten death (WTHD). In 2012, we published a systematic review and meta-ethnography of qualitative studies examining the experience and meaning of this phenomenon. Since then, new studies eligible for inclusion have been reported, including in Europe, a region not previously featured, and specifically in countries with different legal frameworks for euthanasia and assisted suicide. The aim of the present study was to u ...[more]

PMID: 28965095

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Project description:BackgroundThe expressions of a "wish to hasten death" or "wish to die" raise ethical concerns and challenges. These expressions are related to ethical principles intertwined within the field of medical ethics, particularly in end-of-life care. Although some reviews were conducted about this topic, none of them provides an in-depth analysis of the meanings behind the "wish to hasten death/die" based specifically on the ethical principles of autonomy, dignity, and vulnerability. The aim of this review is to understand if and how the meanings behind the "wish to hasten death/die" relate to and are interpreted in light of ethical principles in palliative care.MethodsWe conducted a meta-ethnographic review according to the PRISMA guidelines and aligned with Noblit and Hare's framework. Searches were performed in three databases, Web of Science, PubMed, CINAHL, with no time restrictions. Original qualitative studies exploring the meanings given by patients, family caregivers and healthcare professionals in any context of palliative and end-of-life care were included. A narrative synthesis was undertaken. PROSPERO registration CRD42023360330.ResultsOut of 893 retrieved articles, 26 were included in the analysis, accounting for the meanings of a total of 2,398 participants. Several factors and meanings associated with the "wish to hasten death" and/or "wish to die" were identified and are mainly of a psychosocial and spiritual nature. The ethical principles of autonomy and dignity were the ones mostly associated with the "wish to hasten death". Ethical principles were essentially inferred from the content of included articles, although not explicitly stated as bioethical principles.ConclusionsThis meta-ethnographic review shows a reduced number of qualitative studies on the "wish to hasten death" and/or "wish to die" explicitly stating ethical principles. This suggests a lack of bioethical reflection and reasoning in the empirical end-of-life literature and a lack of embedded ethics in clinical practice. There is a need for healthcare professionals to address these topics compassionately and ethically, taking into account the unique perspectives of patients and family members. More qualitative studies on the meanings behind a wish to hasten death, their ethical contours, ethical reasoning, and implications for clinical practice are needed.

Project description:BackgroundPatient decision aids should help people make evidence-informed decisions aligned with their values. There is limited guidance about how to achieve such alignment.PurposeTo describe the range of values clarification methods available to patient decision aid developers, synthesize evidence regarding their relative merits, and foster collection of evidence by offering researchers a proposed set of outcomes to report when evaluating the effects of values clarification methods.Data sourcesMEDLINE, EMBASE, PubMed, Web of Science, the Cochrane Library, and CINAHL.Study selectionWe included articles that described randomized trials of 1 or more explicit values clarification methods. From 30,648 records screened, we identified 33 articles describing trials of 43 values clarification methods.Data extractionTwo independent reviewers extracted details about each values clarification method and its evaluation.Data synthesisCompared to control conditions or to implicit values clarification methods, explicit values clarification methods decreased the frequency of values-incongruent choices (risk difference, -0.04; 95% confidence interval [CI], -0.06 to -0.02; P < 0.001) and decisional conflict (standardized mean difference, -0.20; 95% CI, -0.29 to -0.11; P < 0.001). Multicriteria decision analysis led to more values-congruent decisions than other values clarification methods (χ2 = 9.25, P = 0.01). There were no differences between different values clarification methods regarding decisional conflict (χ2 = 6.08, P = 0.05).LimitationsSome meta-analyses had high heterogeneity. We grouped values clarification methods into broad categories.ConclusionsCurrent evidence suggests patient decision aids should include an explicit values clarification method. Developers may wish to specifically consider multicriteria decision analysis. Future evaluations of values clarification methods should report their effects on decisional conflict, decisions made, values congruence, and decisional regret.

Project description:OBJECTIVE:Despite evidence supporting physical activity in primary and secondary prevention, many individuals do not meet recommended levels. Mobile health is a field with a growing evidence base and is proposed as a convenient method for delivering health interventions. Despite qualitative exploration of stakeholder perspectives, there is a lack of synthesis to inform evidence-based design. This study aims to resolve this by identifying and synthesising qualitative research on the experience of using mobile health applications to promote physical activity. METHOD:A systematic review focused on qualitative research, mobile health and physical activity was conducted in October 2017 using CINAHL, ERIC, EMBASE, MEDLINE and PsycINFO databases. The protocol was registered with the Prospero database (Registration: CRD42018080610). Results were synthesised as a meta-ethnography. RESULTS:Fifteen studies were included, covering a variety of populations, including people with diabetes, obesity, and serious mental illness. Five themes emerged: (a) personal factors and the experience of using mobile health, (b) mobile health and changes in thinking that support physical activity, (c) the experience of mobile health features, including prompts, goal setting and gamification, (d) the experience of personalised mobile health and physical activity, (e) technical and user issues in mobile health and their effect on experience. CONCLUSION:Personal factors and features of the device influenced the experience of using mobile health to support physical activity. The two mechanisms through which mobile health use facilitated physical activity were strengthening of motivation and changes in self-awareness and strategising. Experiences were not entirely unproblematic as technical issues and adverse effects related to self-monitoring were noted. This synthesis provides insight into the experience of mobile health and is useful for researchers and healthcare practitioners interested in designing user-informed mobile health interventions for promoting physical activity.

Project description:BACKGROUND:Surgical specialities use extensive amounts of antimicrobials, and misuse has been widely reported, making them a key target for antimicrobial stewardship initiatives. Interventions informed by, and tailored to, a clear understanding of the contextual barriers to appropriate antimicrobial use are more likely to successfully improve practice. However, this approach has been under utilised. Our aim is to synthesise qualitative studies on surgical antimicrobial prescribing behaviour (APB) in hospital settings to explain how and why contextual factors act and interact to influence APB amongst surgical teams. We will develop new theory to advance understanding and identify knowledge gaps to inform further research. METHODS:The meta-ethnography will follow the seven-phase method described by Noblit and Hare. We will conduct a comprehensive search using eight databases (AMED, CINAHL, EMBASE, MEDLINE, MEDLINE-in-process, Web of Science, Cochrane Library and PsycINFO) with no date restrictions; forwards and backwards citation searches; and contacting first authors of relevant papers. Studies will be dual screened and included if they use recognised qualitative methods and analysis; focus on contextual factors associated with surgical APB within hospital settings; are available in full in English; and are relevant to the research question. Any disagreements between reviewers will be resolved through discussion to reach consensus. Included studies will be read repeatedly to illuminate key concepts and the relationship between key concepts across studies. Then, key concepts will be sorted into conceptual categories or 'piles' which will be further abstracted to form a conceptual framework explaining surgical APB. During the synthesis, emerging interpretations will be discussed with stakeholders (including authors of included studies where possible; surgical and stewardship practitioners; and patient representatives) to ensure new knowledge is meaningful. DISCUSSION:This research has several strengths: (1) the protocol has been written with reference to established guidance maximising rigour and transparency; (2) the multi-disciplinary research team bring varied interpretative repertoires and relevant methodological skills; and (3) stakeholders will be involved to ensure that findings are relevant, and disseminated via suitable channels, to support improved patient care. SYSTEMATIC REVIEW REGISTRATION:PROSPERO CRD42020184343.

Project description:BackgroundAntimicrobial resistance poses a serious global public health threat. Hospital misuse of antibiotics has contributed to this problem and evidence-based interventions are urgently needed to change inappropriate prescribing practices. This paper reports the first theoretical stage of a longer-term project to improve antibiotic prescribing in hospitals through design of an effective behaviour-change intervention.MethodsQualitative synthesis using meta-ethnography of primary studies reporting doctors' views and experiences of antibiotic prescribing in hospitals for example, their barriers to appropriate prescribing. Twenty electronic databases were systematically searched over a 10-year period and potential studies screened against eligibility criteria. Included studies were quality-appraised. Original participant quotes and author interpretations were extracted and coded thematically into NVivo. All study processes were conducted by two reviewers working independently with findings discussed with the wider team and key stakeholders. Studies were related by findings into clusters and translated reciprocally and refutationally to develop a new line-of-argument synthesis and conceptual model. Findings are reported using eMERGe guidance.ResultsFifteen papers (13 studies) conducted between 2007 and 2017 reporting the experiences of 336 doctors of varying seniority working in acute hospitals across seven countries, were synthesised. Study findings related in four ways which collectively represented multiple challenges to appropriate antibiotic medical prescribing in hospitals: loss of ownership of prescribing decisions, tension between individual care and public health concerns, evidence-based practice versus bedside medicine, and diverse priorities between different clinical teams. The resulting new line-of-argument and conceptual model reflected how these challenges operated on both micro- and macro-level, highlighting key areas for improving current prescribing practice, such as creating feedback mechanisms, normalising input from other specialties and reducing variation in responsibility for antibiotic decisions.ConclusionsThis first meta-ethnography of doctors` experiences of antibiotic prescribing in acute hospital settings has enabled development of a novel conceptual model enhancing understanding of appropriate antibiotic prescribing. That is, hospital antibiotic prescribing is a complex, context-dependent and dynamic process, entailing the balancing of many tensions. To change practice, comprehensive efforts are needed to manage failures in communication and information provision, promote distribution of responsibility for antibiotic decisions, and reduce fear of consequences from not prescribing.Trial registrationPROSPERO registration: CRD42017073740 .

Dataset Information

Understanding patients' experiences of the wish to hasten death: an updated and expanded systematic review and meta-ethnography.

Publications

Understanding patients' experiences of the wish to hasten death: an updated and expanded systematic review and meta-ethnography.

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