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Defining a Good Death (Successful Dying): Literature Review and a Call for Research and Public Dialogue.

ABSTRACT: There is little agreement about what constitutes good death or successful dying. The authors conducted a literature search for published, English-language, peer-reviewed reports of qualitative and quantitative studies that provided a definition of a good death. Stakeholders in these articles included patients, prebereaved and bereaved family members, and healthcare providers (HCPs). Definitions found were categorized into core themes and subthemes, and the frequency of each theme was determined by stakeholder (patients, family, HCPs) perspectives. Thirty-six studies met eligibility criteria, with 50% of patient perspective articles including individuals over age 60 years. We identified 11 core themes of good death: preferences for a specific dying process, pain-free status, religiosity/spirituality, emotional well-being, life completion, treatment preferences, dignity, family, quality of life, relationship with HCP, and other. The top three themes across all stakeholder groups were preferences for dying process (94% of reports), pain-free status (81%), and emotional well-being (64%). However, some discrepancies among the respondent groups were noted in the core themes: Family perspectives included life completion (80%), quality of life (70%), dignity (70%), and presence of family (70%) more frequently than did patient perspectives regarding those items (35%-55% each). In contrast, religiosity/spirituality was reported somewhat more often in patient perspectives (65%) than in family perspectives (50%). Taking into account the limitations of the literature, further research is needed on the impact of divergent perspectives on end-of-life care. Dialogues among the stakeholders for each individual must occur to ensure a good death from the most critical viewpoint-the patient's.

SUBMITTER: Meier EA

PROVIDER: S-EPMC4828197 | biostudies-literature | 2016 Apr

REPOSITORIES: biostudies-literature

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Defining a Good Death (Successful Dying): Literature Review and a Call for Research and Public Dialogue.

Meier Emily A EA Gallegos Jarred V JV Thomas Lori P Montross LP Depp Colin A CA Irwin Scott A SA Jeste Dilip V DV

The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry 20160122 4

There is little agreement about what constitutes good death or successful dying. The authors conducted a literature search for published, English-language, peer-reviewed reports of qualitative and quantitative studies that provided a definition of a good death. Stakeholders in these articles included patients, prebereaved and bereaved family members, and healthcare providers (HCPs). Definitions found were categorized into core themes and subthemes, and the frequency of each theme was determined ...[more]

PMID: 26976293

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Project description:Plain english summaryBackground Patient and public involvement means researchers working with members of the public, patients or carers to jointly plan and carry out research.Aim This article is written by members of three involvement groups, and the university employees that they work with. We wanted to jointly reflect on what enables our collaborative work, and what the challenges are for everyone involved.What we did and how we did it We wanted to establish what the literature defines as 'good' public involvement and compare this with processes and practices in our involvement groups. We therefore carried out a literature review and each group met separately to discuss what characterises good involvement, and what the challenges are. From these discussions we developed a set of descriptions about each group. We compared the literature review findings with what came out of the discussions within the involvement groups.Findings Some of the involvement principles from the literature were similar to the priorities of the involvement groups. In addition, the groups identified characteristics of 'good' involvement practice that were not reported in the literature: passion and enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. In this article we present examples of how principles for good involvement are practiced in these groups, and difficulties we have experienced.AbstractBackground Patient and public involvement is important for producing relevant and accessible health research. Evidence of impact from involvement is growing, but there is also a need for research on how to create conditions for meaningful collaborations between researchers and public advisers.Objective We report on a co-produced self-reflective evaluation of involvement practices in three UK research programmes.Methods A structured review identified research-based principles for 'good' public involvement in research. In parallel, members of three involvement groups co-developed statements on how the groups work, and enablers and challenges to collaborative research. The author team analysed these statements using the findings from the review.Results We identified 11 international articles reporting research-based principles for involvement published between 2013 and 2017. We identified five 'values' and seven 'practice principles' for 'good' involvement. There was convergence between these principles and the priorities of the involvement groups. But the groups also identified additional good involvement practice that were not reported by the literature: passion, enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. We present examples of how principles for good involvement are practiced in these groups, and highlight principles that have been challenging to implement.Conclusions Ongoing appraisal of public involvement is crucial. We present a process for self-evaluation, illuminate what 'good' means to researchers and public advisers involved in research, and identify areas for improvement. We conclude that provision of resources that enable support to public advisers in turn enable universities and research teams to implement other principles of good involvement.

Project description:BACKGROUND:Mobile phone call detail records (CDRs) are increasingly being used in health research. The location element in CDRs is used in various health geographic studies, for example, to track population movement and infectious disease transmission. Vast volumes of CDRs are held by multinational organizations, which may make them available for research under various data governance regimes. However, there is an identified lack of public engagement on using CDRs for health research to contribute to an ethically founded framework. OBJECTIVE:This study aimed to explore public views on the use of call detail records in health research. METHODS:Views on using CDRs in health research were gained via a series of three public workshops (N=61) informed by a pilot workshop of 25 people. The workshops included an initial questionnaire to gauge participants' prior views, discussion on health research using CDRs, and a final questionnaire to record workshop outcome views. The resulting data were analyzed for frequencies and emerging themes. RESULTS:At the outset, most participants (66%, 40/61) knew that location data were collected by operators, but only 3% (2/61) knew they were being used for health research. Initially, the majority of the participants (62%, 38/61) was content for their anonymous CDRs to be used, and this increased (80%, 49/61) after the discussion explained that safeguards were in place. Participants highlighted that terms and conditions should be clearer, as should information to phone users on data collection, privacy safeguards, sharing, and uses in research. CONCLUSIONS:This is the first known study exploring public views of using mobile phone CDRs in health research. It revealed a lack of knowledge among the public on uses of CDRs and indicated that people are generally amenable to the use of anonymized data for research, but they want to be properly informed and safeguarded. We recommend that public views be incorporated into an ethically founded framework for the use of CDRs in health research to promote awareness and social acceptability in data use.

Project description:Traumatic brain injury (TBI) is the most common cause of death and disability in the age group below 40 years. The financial cost of loss of earnings and medical care presents a massive burden to family, society, social care, and healthcare, the cost of which is estimated at £1 billion per annum (about brain injury (online)). At present, we still lack a full understanding on the pathophysiology of TBI, and biomarkers represent the next frontier of breakthrough discoveries. Unfortunately, many tenets limit their widespread adoption. Brain tissue sampling is the mainstay of diagnosis in neuro-oncology; following on this path, we hypothesise that information gleaned from neural tissue samples obtained in TBI patients upon hospital admission may correlate with outcome data in TBI patients, enabling an early, accurate, and more comprehensive pathological classification, with the intent of guiding treatment and future research. We proposed various methods of tissue sampling at opportunistic times: two methods rely on a dedicated sample being taken; the remainder relies on tissue that would otherwise be discarded. To gauge acceptance of this, and as per the guidelines set out by the National Research Ethics Service, we conducted a survey of TBI and non-TBI patients admitted to our Trauma ward and their families. 100 responses were collected between December 2017 and July 2018, incorporating two redesigns in response to patient feedback. 75.0% of respondents said that they would consent to a brain biopsy performed at the time of insertion of an intracranial pressure (ICP) bolt. 7.0% replied negatively and 18.0% did not know. 70.0% would consent to insertion of a jugular bulb catheter to obtain paired intracranial venous samples and peripheral samples for analysis of biomarkers. Over 94.0% would consent to neural tissue from ICP probes, external ventricular drains (EVD), and lumbar drains (LD) to be salvaged, and 95.0% would consent to intraoperative samples for further analysis.

Project description:BackgroundThe role of consent for research use of health information is contentious. Most discussion has focused on when project-specific consent may be waived but, recently, a broader range of consent options has been entertained, including broad opt-in for multiple studies with restrictions and notification with opt-out. We sought to elicit public values in this matter and to work toward an agreement about a common approach to consent for use of personal information for health research through deliberative public dialogues.MethodsWe conducted seven day-long public dialogues, involving 98 participants across Canada. Immediately before and after each dialogue, participants completed a fixed-response questionnaire rating individuals' support for 3 approaches to consent in the abstract and their consent choices for 5 health research scenarios using personal information. They also rated how confident different safeguards made them feel that their information was being used responsibly.ResultsBroad opt-in consent for use of personal information garnered the greatest support in the abstract. When presented with specific research scenarios, no one approach to consent predominated. When profit was introduced into the scenarios, consent choices shifted toward greater control over use. Despite lively and constructive dialogues, and considerable shifting in opinion at the individual level, at the end of the day, there was no substantive aggregate movement in opinion. Personal controls were among the most commonly cited approaches to improving people's confidence in the responsible use of their information for research.ConclusionBecause no one approach to consent satisfied even a simple majority of dialogue participants and the importance placed on personal controls, a mechanism should be developed for documenting consent choice for different types of research, including ways for individuals to check who has accessed their medical record for purposes other than clinical care. This could be done, for example, through a web-based patient portal to their electronic health record. Researchers and policy makers should continue to engage the public to promote greater public understanding of the research process and to look for feasible alternatives to existing approaches to project-specific consent for observational research.

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Defining a Good Death (Successful Dying): Literature Review and a Call for Research and Public Dialogue.

Publications

Defining a Good Death (Successful Dying): Literature Review and a Call for Research and Public Dialogue.

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