BACKGROUND: Voluntary stopping of eating and drinking as an option to end life prematurely is gaining international attention, and health care professionals are increasingly confronted with the wish to die through voluntary stopping of eating and drinking by individuals. While to date, there are no guidelines in Switzerland to orient professional support, it is of interest how professionals and other people involved react to the situation. The aim of this qualitative study was to explore how health care professionals in Switzerland accompany individuals during voluntary stopping of eating and drinking and to analyze this decision-making process.
METHODS: Charmaz\'s grounded theory constructivist methodology uses guidelines for systematic, theory-driven data analysis underpinned by a pragmatic philosophical perspective. Data were collected in autumn 2016 as part of a regional palliative care conference on voluntary stopping of eating and drinking. All participants of the expert meeting (N = 50, including nurses, counsellors, ethicists, medical doctors, politicians, volunteers, and relatives) were invited to the focus group interviews, of which N = 47 participated. We conducted five focus group interviews, each lasting one hour.
RESULTS: The results showed that the accompaniment of those willing to die during voluntary stopping of eating and drinking was either discussed and cleared with one another or was unspoken and silently accompanied.
CONCLUSIONS: The demands of participants for more knowledge must be heeded, and there is also a need for systematic instructions on how to proceed in the case of voluntary stopping of eating and drinking support and what needs to be considered.

HIV cure research involving cell and gene therapy has intensified in recent years. There is a growing need to identify ethical standards and safeguards to ensure cell and gene therapy (CGT) HIV cure research remains valued and acceptable to as many stakeholders as possible as it advances on a global scale.
To elicit preliminary ethical and practical considerations to guide CGT HIV cure research, we implemented a qualitative, in-depth interview study with three key stakeholder groups in the United States: (1) biomedical HIV cure researchers, (2) bioethicists, and (3) community stakeholders. Interviews permitted evaluation of informants\' perspectives on how CGT HIV cure research should ethically occur, and were transcribed verbatim. We applied conventional content analysis focused on inductive reasoning to analyze the rich qualitative data and derive key ethical and practical considerations related to CGT towards an HIV cure.
We interviewed 13 biomedical researchers, 5 community members, and 1 bioethicist. Informants generated considerations related to: perceived benefits of CGT towards an HIV cure, perceived risks, considerations necessary to ensure an acceptable benefit/risk balance, CGT strategies considered unacceptable, additional ethical considerations, and considerations for first-in-human CGT HIV cure trials. Informants also proposed important safeguards to developing CGT approaches towards an HIV cure, such as the importance of mitigating off-target effects, mitigating risks associated with long-term duration of CGT interventions, and mitigating risks of immune overreactions.
Our study identified preliminary considerations for CGT-based HIV cure across three key stakeholder groups. Respondents identified an ideal cure strategy as one which would durably control HIV infection, protect the individual from re-acquisition, and eliminate transmission to others. Known and unknown risks should be anticipated and perceived as learning opportunities to preserve and honor the altruism of participants. Preclinical studies should support these considerations and be transparently reviewed by regulatory experts and peers prior to first-in-human studies. To protect the public trust in CGT HIV cure research, ethical and practical considerations should be periodically revisited and updated as the science continues to evolve. Additional ethics studies are required to expand stakeholder participation to include traditionally marginalized groups and clinical care providers.

The quality of ethics consults is notoriously difficult to measure. Survey-based assessments cannot capture nuances of consultations. To address this gap, we conducted interviews with health professionals who requested ethics consults during the initial phase of the COVID-19 pandemic.
Healthcare professionals requesting ethics consultation between March 2020 and May 2020 at a tertiary academic medical centre were eligible to participate. We asked participants to comment on the consults they called and thematically analysed responses to identify features associated with optimal quality consultations.
Of 14 healthcare providers, 8 (57%) were women and professions were as follows: 11 (79%) medical doctors, 1 (7%) social worker, 1 (7%) physician assistant and 1 (7%) nurse practitioner. Two aspects of quality emerged: satisfaction and value. Themes within the domain of satisfaction included: responsiveness of the ethics consultant, willingness to consult, institutional role of the ethics service and identifying areas for improvement. When describing value, respondents spoke of the intrapersonal and interpersonal worth of consultation.
Participants were generally satisfied with ethics consultation services, similar to opinions of those found in pre-COVID-19 survey studies. Our qualitative approach allowed for a richer exploration of the value of ethics consultation during the pandemic and has implications for ethics consultation services more broadly. Ethics consultation-emphasising both the process and outcome-created valuable moral spaces, promoting thoughtful and ethical responses to dilemmas in patient care. Future assessments should incorporate patient and family/surrogate perspectives and explore the domain of education as an additional quality measure.

Within this paper, we discuss Moral Distress Reflective Debriefs as a promising approach to address and mitigate moral distress experienced by healthcare professionals. We briefly review the empirical and theoretical literature on critical incident stress debriefing and psychological debriefing to highlight the potential benefits of this modality. We then describe the approach that we take to facilitating reflective group discussions in response to morally distressing patient cases (\"Moral Distress Reflective Debriefs\"). We discuss how the debriefing literature and other clinical ethics activities influenced the development of our approach. In particular, we focus on the role of the clinical ethicist as a facilitator with particular emphasis on encouraging perspective-taking and nurturing ethical attunement in a supportive manner. We suggest that this approach reduces the narrowing effects of frustration and anger that are often reported when individuals experience moral-constraint distress. Finally, we provide an example of Moral Distress Reflective Debriefs, elucidating how this supportive process complements ethics consultation and can mitigate the negative effects of moral distress.

The aim of this research was to gain insight into the experiences and perspectives of individual members of a Medical Research Ethics Committee (MREC) regarding their individual roles and possible tensions within and between these roles. We conducted a qualitative interview study among members of a large MREC, supplemented by a focus group meeting. Respondents distinguish five roles: protector, facilitator, educator, advisor and assessor. Central to the role of protector is securing valid informed consent and a proper risk-benefit analysis. The role of facilitator implies that respondents want to think along with and assist researchers in order to help medical science progress. As educators, the respondents want to raise ethical and methodological awareness of researchers. The role of advisor implies that respondents bring in their own expertise. The role of assessor points to contributing to the overall evaluation of the research proposal. Various tensions were identified within and between roles. Within the role of protector, a tension is experienced between paternalism and autonomy. Between the role of protector and facilitator tensions occur when the value of a study is questioned while risks and burdens for the subjects are negligible. Within the role of assessor, a tension is felt between the implicit nature of judgments and the need for more explicit formulations. Awareness of various roles and responsibilities may prevent one-sided views on MREC work, not only by members themselves, but also by researchers. Tensions within and between the roles require reflection by MREC members.

BACKGROUND: There is a concern that the apparent effectiveness of interventions tested in clinical trials may not be an accurate reflection of their actual effectiveness in usual practice. Pragmatic randomized controlled trials (RCTs) are designed with the intent of addressing this discrepancy. While pragmatic RCTs may increase the relevance of research findings to practice they may also raise new ethical concerns (even while reducing others). To explore this question, we interviewed key stakeholders with the aim of identifying potential ethical challenges in the design and conduct of pragmatic RCTs with a view to developing future guidance on these issues.
METHODS: Interviews were conducted with clinical investigators, methodologists, patient partners, ethicists, and other knowledge users (e.g., regulators). Interviews covered experiences with pragmatic RCTs, ethical issues relevant to pragmatic RCTs, and perspectives on the appropriate oversight of pragmatic RCTs. Interviews were coded inductively by two coders. Interim and final analyses were presented to the broader team for comment and discussion before the analytic framework was finalized.
RESULTS: We conducted 45 interviews between April and September 2018. Interviewees represented a range of disciplines and jurisdictions as well as varying content expertise. Issues of importance in pragmatic RCTs were (1) identification of relevant risks from trial participation and determination of what constitutes minimal risk; (2) determining when alterations to traditional informed consent approaches are appropriate; (3) the distinction between research, quality improvement, and practice; (4) the potential for broader populations to be affected by the trial and what protections they might be owed; (5) the broader range of trial stakeholders in pragmatic RCTs, and determining their roles and responsibilities; and (6) determining what constitutes \"usual care\" and implications for trial reporting.
CONCLUSIONS: Our findings suggest both the need to discuss familiar ethical topics in new ways and that there are new ethical issues in pragmatic RCTs that need greater attention. Addressing the highlighted issues and developing guidance will require multidisciplinary input, including patient and community members, within a broader and more comprehensive analysis that extends beyond consent and attends to the identified considerations relating to risk and stakeholder roles and responsibilities.

Some 30 years ago the role of the clinical ethics consultant (CEC) was formalized. At the time, the perception of the role differed between two groups serving in that capacity, clinicians and nonclinicians. Differences in their roles reflected their training and experience. These divergent views were resolved semantically by designating the role of the CEC as \"ethics facilitation.\" In practice the different perspectives have remained. However, the subsequent published literature on clinical ethics consultation has not adequately reflected the activity of the clinician as a CEC. There have been recurring unanswered calls for the acquisition of empirical data on the nature of the problems that prompt ethics consultation requests and the functions required to address them. The authors introduce a template that provides a means to acquire such data for clinician ethicists. A similar instrument could be constructed to reflect the role of the nonclinician ethicist serving in that capacity.

This article discusses the approach of the Clinical Ethics Consultation Advisory Committee (CECA) in developing A Case-Based Study Guide for Addressing Patient-Centered Ethical Issues in Health Care. This article addresses the processes used by the CECA, its use of pivot questions intended to encourage critical reflection, and the target audience of this work. It first considers the salience of case studies in general education and their relevance for training ethics consultants. Second, it discusses the enfolding approach used in presenting the case material designed to engage the trainee in the details of the case while stimulating critical reflection. And, third, this article briefly comments on the target audience with the caveat that even superbly developed cases are prone to misuse, although that prospect should not deter their development.

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Little is known about what factors may contribute to the growth of a consultation service or how a practice may change or evolve across time.
This study examines data collected from a busy ethics consultation service over a period of more than two decades.
We report a number of longitudinal findings that represent significant growth in the volume of ethics consultation requests from 19 in 1990 to 551 in 2013, as well as important changes in the patient population for which ethics help is requested. The findings include (1) a steady growth in requests from primary care providers (e.g., physicians and nurses), as well as increases in ancillary services (e.g., social workers); (2) a decrease in length of stay (days) before ethics help is requested; (3) an increase in the reasons that individuals ask for help from ethics; (4) an upsurge in consults requests from areas outside the intensive care unit (ICU); (5) a decrease in patients that died during hospitalization (e.g., live discharges); and (6) growth in the numbers of patients lacking decision-making capacity.
We believe the increases in consult requests reflect appropriate and necessary growth because recent consultations have also been associated with consultations requiring (7) additional interventions and (8) reasonably high time intensity scores.