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

ObjectivesPatients 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.SettingEligible studies originated from Australia, Canada, China, Germany, The Netherlands, Switzerland, Thailand and USA.ParticipantsStudies of patients with life-threatening conditions that had expressed the WTHD.DesignThe 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 Franceet al. Quality assessment was done using the Critical Appraisal Skills Programme checklist.Results14 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.ConclusionsThe 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.

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Ensuring that the outcome domains proposed for use in burns research are relevant to adult burn patients: a systematic review of qualitative research evidence

Burns & Trauma ◽

10.1093/burnst/tkaa030 ◽

2020 ◽

Vol 8 ◽

Author(s):

Jonathan Mathers ◽

Naiem Moiemen ◽

Amy Bamford ◽

Fay Gardiner ◽

Joanne Tarver

Keyword(s):

Systematic Review ◽

Qualitative Research ◽

Cognitive Skills ◽

English Language ◽

Burn Injury ◽

Sense Of Self ◽

Length Of Hospital Stay ◽

Core Outcome ◽

Qualitative Synthesis ◽

Outcome Domain

Abstract Background There have been several attempts to define core outcome domains for use in research focused on adult burns. Some have been based in expert opinion, whilst others have used primary qualitative research to understand patients’ perspectives on outcomes. To date there has not been a systematic review of qualitative research in burns to identify a comprehensive list of patient-centred outcome domains. We therefore conducted a systematic review of qualitative research studies in adult burns. Methods We searched multiple databases for English-language, peer-reviewed, qualitative research papers. We used search strategies devised using the SPIDER tool for qualitative synthesis. Our review utilized an iterative three-step approach: (1) outcome-focused coding; (2) development of descriptive accounts of outcome-relevant issues; and (3) revisiting studies and the broader theoretical literature in order to frame the review findings. Results Forty-one articles were included. We categorized papers according to their primary focus. The category with the most papers was adaptation to life following burn injury (n = 13). We defined 19 outcome domains across the 41 articles: (1) sense of self; (2) emotional and psychological morbidity; (3) sensory; (4) scarring and scar characteristics; (5) impact on relationships; (6) mobility and range of joint motion; (7) work; (8) activities of daily living and self-care; (9) treatment burden; (10) engagement in activities; (11) wound healing and infection; (12) other physical manifestations; (13) financial impact; (14) impact on spouses and family members; (15) analgesia and side effects; (16) cognitive skills; (17) length of hospital stay; (18) access to healthcare; and (19) speech and communication. We suggest that sense of self is a core concern for patients that, to date, has not been clearly conceptualized in the burns outcome domain literature. Conclusions This outcome domain framework identifies domains that are not covered in previous attempts to outline core outcome domains for adult burn research. It does so with reference to existing theoretical perspectives from the sociology and psychology of medicine. We propose that this framework can be used as a basis to ensure that outcome assessment is patient-centred. Sense of self requires further consideration as a core outcome domain.

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Assessment of the wish to hasten death in patients with advanced disease: A systematic review of measurement instruments

Palliative Medicine ◽

10.1177/0269216316669867 ◽

2016 ◽

Vol 31 (6) ◽

pp. 510-525 ◽

Cited By ~ 12

Author(s):

Mercedes Bellido-Pérez ◽

Cristina Monforte-Royo ◽

Joaquín Tomás-Sábado ◽

Josep Porta-Sales ◽

Albert Balaguer

Keyword(s):

Systematic Review ◽

Advanced Disease ◽

Measurement Instruments ◽

Wish To Hasten Death

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Understanding meaning in life interventions in patients with advanced disease: A systematic review and realist synthesis

Palliative Medicine ◽

10.1177/0269216316685235 ◽

2017 ◽

Vol 31 (9) ◽

pp. 798-813 ◽

Cited By ~ 24

Author(s):

Mariona Guerrero-Torrelles ◽

Cristina Monforte-Royo ◽

Andrea Rodríguez-Prat ◽

Josep Porta-Sales ◽

Albert Balaguer

Keyword(s):

Systematic Review ◽

Meaning In Life ◽

Advanced Disease ◽

Contextual Factors ◽

Life Quality ◽

Well Being ◽

Physical Symptoms ◽

Realist Synthesis ◽

Clinical Benefits ◽

Meta Analyses

Background: Among patients with advanced disease, meaning in life is thought to enhance well-being, promote coping and improve the tolerance of physical symptoms. It may also act as a buffer against depression and hopelessness. As yet, there has been no synthesis of meaning in life interventions in which contextual factors, procedures and outcomes are described and evaluated. Aims: To identify meaning in life interventions implemented in patients with advanced disease and to describe their context, mechanisms and outcomes. Design: Systematic review according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and realist synthesis of meaning in life interventions using criteria from the Realist And Meta-narrative Evidence Syntheses: Evolving Standards project. Data sources: The CINAHL, PsycINFO, PubMed and Web of Science databases were searched. Results: A total of 12 articles were included in the systematic review, corresponding to nine different interventions. Five articles described randomized controlled trials, two were qualitative studies, two were commentaries or reflections, and there was one pre–post evaluation, one exploratory study and one description of a model of care. Analysis of context, mechanisms and outcomes configurations showed that a core component of all the interventions was the interpersonal encounter between patient and therapist, in which sources of meaning were explored and a sense of connectedness was re-established. Meaning in life interventions were associated with clinical benefits on measures of purpose-in-life, quality of life, spiritual well-being, self-efficacy, optimism, distress, hopelessness, anxiety, depression and wish to hasten death. Conclusion: This review provides an explanatory model of the contextual factors and mechanisms that may be involved in promoting meaning in life. These approaches could provide useful tools for relieving existential suffering at the end of life.

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Life review on psycho-spiritual outcomes among older adults with life-threatening illness: A systematic review

Innovation in Aging ◽

10.1093/geroni/igaa057.3316 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 900-901

Author(s):

Mandong Liu ◽

Ying Wang ◽

Iris Chi

Keyword(s):

Systematic Review ◽

Older Adults ◽

Meaning In Life ◽

Meta Analysis ◽

Grey Literature ◽

Well Being ◽

Life Review ◽

Cochrane Library ◽

Spiritual Well Being ◽

Life Threatening

Abstract Life review has been widely conducted to help older adults enhance well-being and cope with burdens. Spirituality is an important part of an older adult’s overall well-being, especially for those with life-threatening illnesses. However, there is no review study examining the effectiveness of life review interventions on psycho-spiritual outcomes among this population. The aim of the study was to examine the effectiveness of life review on psycho-spiritual well-being among older adults with life-threatening illnesses. A systematic review with meta-analysis consistent with the recommendations of the Cochrane Collaboration was conducted. Database searches included PubMed, PsycINFO, the Cochrane Library, the Campbell Library, EBSCO, CNKI, and the Airiti Library up to March 2020. Grey literature and reference lists from relevant articles were also searched and reviewed. 34 studies were included in the systematic review and 33 were included in the meta-analysis for outcomes of anxiety, depression, and quality of life. Other psycho-spiritual outcome measures that were not included in the meta-analysis due to the small number of studies included mood, apathy, life satisfaction, meaning in life, spiritual well-being, and some multi-dimensional instruments. The studies greatly varied in program design, content, format, length, interventionist, and more. The meta-analyses demonstrated standardized mean differences in favor of life review compared with the control with small to moderate effect sizes. The reviewers call for including more psycho-spiritual well-being measures among interventions for older adults with life-limiting illnesses, as well as studies with adequate sample size and rigorous designs in future research.

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Burden of Congenital Rubella Syndrome (CRS) in Bangladesh: Systematic Review of Existing Literature and Transmission Modelling of Seroprevalence Studies

Infectious Disorders - Drug Targets ◽

10.2174/1871526518666181004092758 ◽

2020 ◽

Vol 20 (3) ◽

pp. 284-290

Author(s):

Jocelyn Chan ◽

Yue Wu ◽

James Wood ◽

Mohammad Muhit ◽

Mohammed K. Mahmood ◽

...

Keyword(s):

Systematic Review ◽

Deterministic Model ◽

Case Series ◽

Controlled Vocabulary ◽

Congenital Rubella Syndrome ◽

Free Text ◽

Childbearing Age ◽

Vaccination Programs ◽

Congenital Rubella ◽

The Impact

Background and Objectives: Congenital Rubella Syndrome (CRS) is the leading cause of vaccine-preventable congenital anomalies. Comprehensive country-level data on the burden of CRS in low and middle-income countries, such as Bangladesh, are scarce. This information is essential for assessing the impact of rubella vaccination programs. We aim to systematically review the literature on the epidemiology of CRS and estimate the burden of CRS in Bangladesh. Methods: We conducted a systematic review of existing literature and transmission modelling of seroprevalence studies to estimate the pre-vaccine period burden of CRS in Bangladesh. OVID Medline (1948 – 23 November 2016) and OVID EMBASE (1974 – 23 November 2016) were searched using a combination of the database-specific controlled vocabulary and free text terms. We used an age-stratified deterministic model to estimate the pre-vaccination burden of CRS in Bangladesh. Findings: Ten articles were identified, published between 2000 and 2014, including seven crosssectional studies, two case series and one analytical case-control study. Rubella seropositivity ranged from 47.0% to 86.0% among all age population. Rubella sero–positivity increased with age. Rubella seropositivity among women of childbearing age was 81.0% overall. The estimated incidence of CRS was 0·99 per 1,000 live births, which corresponds to approximately 3,292 CRS cases annually in Bangladesh. Conclusion: The estimated burden of CRS in Bangladesh during the pre-vaccination period was high. This will provide important baseline information to assess the impact and cost-effectiveness of routine rubella immunisation, introduced in 2012 in Bangladesh.

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Misuse of medication in adult substance misuse services: a systematic review protocol

BMJ Open ◽

10.1136/bmjopen-2020-047283 ◽

2021 ◽

Vol 11 (6) ◽

pp. e047283

Author(s):

Rosalind Gittins ◽

Louise Missen ◽

Ian Maidment

Keyword(s):

Systematic Review ◽

Substance Misuse ◽

Data Extraction ◽

Meta Analysis ◽

Grey Literature ◽

Opioid Analgesics ◽

Physical And Mental Health ◽

Qualitative Synthesis ◽

Treatment Services ◽

The Impact

IntroductionThere is a growing concern about the misuse of over the counter (OTC) and prescription only medication (POM) because of the impact on physical and mental health, drug interactions, overdoses and drug-related deaths. These medicines include opioid analgesics, anxiolytics such as pregabalin and diazepam and antidepressants. This protocol outlines how a systematic review will be undertaken (during June 2021), which aims to examine the literature on the pattern of OTC and POM misuse among adults who are accessing substance misuse treatment services. It will include the types of medication being taken, prevalence and demographic characteristics of people who access treatment services.Methods and analysisAn electronic search will be conducted on the Cochrane, OVID Medline, Pubmed, Scopus and Web of Science databases as well as grey literature. Two independent reviewers will conduct the initial title and abstract screenings, using predetermined criteria for inclusion and exclusion. If selected for inclusion, full-text data extraction will be conducted using a pilot-tested data extraction form. A third reviewer will resolve disagreements if consensus cannot be reached. Quality and risk of bias assessment will be conducted for all included studies. A qualitative synthesis and summary of the data will be provided. If possible, a meta-analysis with heterogeneity calculation will be conducted; otherwise, Synthesis Without Meta-analysis will be undertaken for quantitative data. The reporting of this protocol follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses.Ethics and disseminationEthical approval is not required. Findings will be peer reviewed, published and shared verbally, electronically and in print, with interested clinicians and policymakers.PROSPERO registration numberCRD42020135216.

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What is the risk of prostate cancer mortality following negative systematic TRUS-guided biopsies? A systematic review

BMJ Open ◽

10.1136/bmjopen-2020-040965 ◽

2020 ◽

Vol 10 (12) ◽

pp. e040965

Author(s):

Sandra Miriam Kawa ◽

Signe Benzon Larsen ◽

John Thomas Helgstrand ◽

Peter Iversen ◽

Klaus Brasso ◽

...

Keyword(s):

Prostate Cancer ◽

Systematic Review ◽

Data Extraction ◽

Specific Antigen ◽

Transrectal Ultrasound ◽

Population Based ◽

Free Text ◽

Medical Subject Headings ◽

Prognostic Information ◽

Prostate Biopsies

ObjectiveTo investigate the risk of prostate cancer-specific mortality (PCSM) following initial negative systematic transrectal ultrasound-guided (TRUS) prostate biopsies.DesignSystematic review.Data sourcesPubMed and Embase were searched using a string combination with keywords/Medical Subject Headings terms and free text in the search builder. Date of search was 13 April 2020.Study selectionStudies addressing PCSM following initial negative TRUS biopsies. Randomised controlled trials and population-based studies including men with initial negative TRUS biopsies reported in English from 1990 until present were included.Data extractionData extraction was done using a predefined form by two authors independently and compared with confirm data; risk of bias was assessed using the Newcastle–Ottawa Scale for cohort studies when applicable.ResultsFour eligible studies were identified. Outcomes were reported differently in the studies as both cumulative incidence and Kaplan-Meier estimates have been used. Regardless of the study differences, all studies reported low estimated incidence of PCSM of 1.8%–5.2% in men with negative TRUS biopsies during the following 10–20 years. Main limitation in all studies was limited follow-up.ConclusionOnly a few studies have investigated the risk of PCSM following initial negative biopsies and all studies included patients before the era of MRI of the prostate. However, the studies point to the fact that the risk of PCSM is low following initial negative TRUS biopsies, and that the level of prostate-specific antigen before biopsies holds prognostic information. This may be considered when advising patients about the need for further diagnostic evaluation.PROSPERO registration numberCRD42019134548.

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Applying natural language processing and machine learning techniques to patient experience feedback: a systematic review

BMJ Health & Care Informatics ◽

10.1136/bmjhci-2020-100262 ◽

2021 ◽

Vol 28 (1) ◽

pp. e100262

Author(s):

Mustafa Khanbhai ◽

Patrick Anyadi ◽

Joshua Symons ◽

Kelsey Flott ◽

Ara Darzi ◽

...

Keyword(s):

Machine Learning ◽

Systematic Review ◽

Social Media ◽

Natural Language Processing ◽

Natural Language ◽

Patient Experience ◽

Language Processing ◽

Performance Metrics ◽

Free Text ◽

Patient Feedback

ObjectivesUnstructured free-text patient feedback contains rich information, and analysing these data manually would require a lot of personnel resources which are not available in most healthcare organisations.To undertake a systematic review of the literature on the use of natural language processing (NLP) and machine learning (ML) to process and analyse free-text patient experience data.MethodsDatabases were systematically searched to identify articles published between January 2000 and December 2019 examining NLP to analyse free-text patient feedback. Due to the heterogeneous nature of the studies, a narrative synthesis was deemed most appropriate. Data related to the study purpose, corpus, methodology, performance metrics and indicators of quality were recorded.ResultsNineteen articles were included. The majority (80%) of studies applied language analysis techniques on patient feedback from social media sites (unsolicited) followed by structured surveys (solicited). Supervised learning was frequently used (n=9), followed by unsupervised (n=6) and semisupervised (n=3). Comments extracted from social media were analysed using an unsupervised approach, and free-text comments held within structured surveys were analysed using a supervised approach. Reported performance metrics included the precision, recall and F-measure, with support vector machine and Naïve Bayes being the best performing ML classifiers.ConclusionNLP and ML have emerged as an important tool for processing unstructured free text. Both supervised and unsupervised approaches have their role depending on the data source. With the advancement of data analysis tools, these techniques may be useful to healthcare organisations to generate insight from the volumes of unstructured free-text data.

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