BACKGROUND: Respect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients' preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of 'relational autonomy' may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.
MAIN BODY: Here, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.
CONCLUSION: This article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices.
Background: Euthanasia and assisted suicide (EAS) based on a psychiatric disorder (psychiatric EAS) continue to pose ethical and policy challenges, even in countries where the practice has been allowed for years. We conducted a systematic review of reasons, a specific type of review for bioethical questions designed to inform rational policy-making. Our aims were twofold: (1) to systematically identify all published reasons for and against the practice (2) to identify current gaps in the debate and areas for future research.
Methods: Following the PRISMA guidelines, we performed a search across seven electronic databases to include publications focusing on psychiatric EAS and providing ethical reasons. Reasons were grouped into domains by qualitative content analysis.
Results: We included 42 articles, most of which were written after 2013. Articles in favor and against were evenly distributed. Articles in favor were mostly full-length pieces written by non-clinicians, with articles against mostly reactive, commentary-type pieces written by clinicians. Reasons were categorized into eight domains: (1) mental and physical illness and suffering (2) decisional capacity (3) irremediability (4) goals of medicine and psychiatry (5) consequences for mental health care (6) psychiatric EAS and suicide (7) self-determination and authenticity (8) psychiatric EAS and refusal of life-sustaining treatment. Parity- (or discrimination-) based reasons were dominant across domains, mostly argued for by non-clinicians, while policy reasons were mostly pointed to by clinicians.
Conclusions: The ethical debate about psychiatric EAS is relatively young, with prominent reasons of parity. More direct engagement is needed to address ethical and policy considerations.
BACKGROUND: Considering social cognitive theory and current literature about successful advance care planning in nursing homes, sufficient knowledge and self-efficacy are important preconditions for staff to be able to carry out advance care planning in practice.
AIM: Exploring to what extent nurses' knowledge about and self-efficacy is associated with their engagement in advance care planning in nursing homes.
DESIGN: Survey study as part of a baseline measurement of a randomised controlled cluster trial (NCT03521206).
SETTING/PARTICIPANTS: Nurses in a purposive sample of 14 nursing homes in Belgium.
METHODS: A survey was distributed among nurses, evaluating knowledge (11 true/false items), self-efficacy (12 roles and tasks on 10-point Likert-type scale) and six advance care planning practices (yes/no), ranging from performing advance care planning conversations to completing advance directives.
RESULTS: A total of 196 nurses participated (66% response rate). While knowledge was not significantly associated with advance care planning practices, self-efficacy was. One unit's increase in self-efficacy was statistically associated with an estimated 32% increase in the number of practices having carried out.
CONCLUSIONS: Nurses' engagement in advance care planning practices is mainly associated with their self-efficacy rather than their knowledge. Further research is necessary to improve the evidence regarding the causal relationship between constructs. However, these results suggest that educational programmes that focus solely on knowledge might not lead to increasing uptake of advance care planning in nurses.
BACKGROUND: Respect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective of different theoretical traditions. Many authors claim that the principle of respect for autonomy needs to be reconceptualised starting from a relational viewpoint. Along these lines, the notion of relational autonomy is attracting increasing attention in medical ethics. Yet, others argue that relational autonomy needs further clarification in order to be adequately operationalised for medical practice. To this end, we examined the meaning, foundations, and uses of relational autonomy in the specific literature of end-of-life care ethics.
METHODS: Using PRESS and PRISMA procedures, we conducted a systematic review of argument-based ethics publications in 8 major databases of biomedical, philosophy, and theology literature that focused on relational autonomy in end-of-life care. Full articles were screened. All included articles were critically appraised, and a synthesis was produced.
RESULTS: Fifty publications met our inclusion criteria. Twenty-eight articles were published in the last 5 years; publications were originating from 18 different countries. Results are organized according to: (a) an individualistic interpretation of autonomy; (b) critiques of this individualistic interpretation of autonomy; (c) relational autonomy as theoretically conceptualised; (d) relational autonomy as applied to clinical practice and moral judgment in end-of-life situations.
CONCLUSIONS: Three main conclusions were reached. First, literature on relational autonomy tends to be more a 'reaction against' an individualistic interpretation of autonomy rather than be a positive concept itself. Dichotomic thinking can be overcome by a deeper development of the philosophical foundations of autonomy. Second, relational autonomy is a rich and complex concept, formulated in complementary ways from different philosophical sources. New dialogue among traditionally divergent standpoints will clarify the meaning. Third, our analysis stresses the need for dialogical developments in decision making in end-of-life situations. Integration of these three elements will likely lead to a clearer conceptualisation of relational autonomy in end-of-life care ethics. This should in turn lead to better decision-making in real-life situations.
Purpose: Intensive care unit health care professionals must be skilled in providing end-of-life care. Crucial in this kind of care is end-of-life decision-making, which is a complex process involving a variety of stakeholders and requiring adequate justification. The aim of this systematic review is to analyse papers tackling ethical issues in relation to end-of-life decision-making in intensive care units. It explores the ethical positions, arguments and principles.
Methods: A literature search was conducted in bibliographic databases and grey literature sources for the time period from 1990 to 2019. The constant comparative method was used for qualitative analysis of included papers in order to identify ethical content including ethical positions, ethical arguments, and ethical principles used in decision-making process.
Results: In the 15 included papers we have identified a total of 43 ethical positions. Ten positions were identified as substantive, 33 as procedural. Twelve different ethical principles emerged from the ethical arguments. The most frequently used principles are the principles of beneficence, autonomy and nonmaleficence.
Conclusions: We have demonstrated that recommendations and guidelines designed specifically by intensive or critical care experts for intensive care units promote similar ethical positions, with minimal dissenting positions.
BACKGROUND: Research has highlighted the need for improving the implementation of advance care planning (ACP) in nursing homes. We developed a theory-based multicomponent ACP intervention (the ACP+ programme) aimed at supporting nursing home staff with the implementation of ACP into routine nursing home care. We describe here the protocol of a cluster randomised controlled trial (RCT) that aims to evaluate the effects of ACP+ on nursing home staff and volunteer level outcomes and its underlying processes of change.
METHODS: We will conduct a cluster RCT in Flanders, Belgium. Fourteen eligible nursing homes will be pair-matched and one from each pair will be randomised to either continue care and education as usual or to receive the ACP+ programme (a multicomponent programme which is delivered stepwise over an eight-month period with the help of an external trainer). Primary outcomes are: nursing home care staff's knowledge of, and self-efficacy regarding ACP. Secondary outcomes are: 1) nursing home care staff's attitudes towards ACP and ACP practices; 2) support staff's and volunteer's ACP practices and 3) support staff's and volunteers' self-efficacy. Measurements will be performed at baseline and eight months post-measurement, using structured self-reported questionnaires. A process evaluation will accompany the outcome evaluation in the intervention group, with measurements throughout and post-intervention to assess implementation, mechanisms of impact and context and will be carried out using a mixed-methods design.
DISCUSSION: There is little high-quality evidence regarding the effectiveness and underlying processes of change of ACP in nursing homes. This combined outcome and process evaluation of the ACP+ programme aims to contribute to building the necessary evidence to improve ACP and its uptake for nursing home residents and their family.
TRIAL REGISTRATION: The study is registered at ClinicalTrials.gov (no. NCT03521206). Registration date: May 10, 2018. Inclusion of nursing homes started March, 2018. Hence, the trial was retrospectively registered but before end of data collection and analyses.
AIMS AND OBJECTIVES: To explore how Flemish nurses working in hospitals and home care experience their involvement in the care of patients requesting euthanasia 15 years after the legalisation of euthanasia.
BACKGROUND: Euthanasia was legalised in Belgium in 2002. Despite prior research that charted the experiences of nurses in euthanasia care before and right after legalisation in Belgium, it remains unclear how Flemish nurses currently, 15 years after the legalisation, experience their involvement.
DESIGN: A grounded theory design, using semi-structured in-depth interviews.
METHODS: We interviewed 26 nurses working in hospitals or in home care, who had experience with caring for patients requesting euthanasia. Data were collected using a purposive sample and then a snowball sample. Data collection and data analysis were conducted simultaneously. Data were analysed by using the Qualitative Analysis Guide of Leuven. The study adhered to the COREQ guidelines.
RESULTS: Caring for a patient requesting euthanasia continues to be an intense experience characterized by ambivalence. The nature of euthanasia itself contributes to the intensity of this care process. The nurses described euthanasia as something unnatural and planned that generated many questions and doubts. Nevertheless, most interviewees stated that they were able to contribute to a dignified end of life and make a difference, giving them a profound feeling of professional fulfilment. However, when nurses were not able to contribute to good euthanasia care, they struggled with strong negative feelings and frustrations.
CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: Although the results suggest some subtle shifts in nurses' experiences over time, they do not indicate perceptions of euthanasia as a normal practice by the nurses involved. Research on the perceptions of nurses who have strong negative experiences or conscientious objections is needed to further clarify nurses' ethical positions on euthanasia care.
BACKGROUND: In the last two decades, nursing authors have published ethical analyses of palliative sedation-an end-of-life care practice that also receives significant attention in the broader medical and bioethics literature. This nursing literature is important, because it contributes to disciplinary understandings about nursing values and responsibilities in end-of-life care.
RESEARCH AIM: The purpose of this project is to review existing nursing ethics literature about palliative sedation, and to analyze how nurses' moral identities are portrayed within this literature.
RESEARCH DESIGN: We reviewed discussion papers, written by nurses about the ethics of palliative sedation, which were cited in MEDLINE, CINAHL, Nursing and Allied Health, or Philosopher's Index (search date March 2018). Twenty-one papers met selection criteria. We performed a comprehensive review and analysis (using the Qualitative Analysis Guide of Leuven), of the values, responsibilities, and relationships reflected in authors' portrayal of the nursing role.
FINDINGS: Two different tones are apparent in the extant nursing ethics literature. One is educational, while the other is critically reflective. Irrespective of tone, all authors agree on the alleviation of suffering as a fundamental nursing responsibility. However, they differ in their analysis of this responsibility in relation to other values in end-of-life care, including those that depend on consciousness. Finally, authors emphasize the importance of subjective and experience-based understandings of palliative sedation, which they argue as depending on nurses' proximity to patients and families in end-of-life care.
DISCUSSION AND CONCLUSION: Based on our findings, we develop three recommendations for future writing by nurses about palliative sedation. These relate to the responsibility of recognizing how consciousness might matter in (some) peoples' moral experiences of death and dying, to the importance of moral reflectiveness in nursing practice, and to the value of a relational approach in conceptualizing the nursing ethics of palliative sedation.
BACKGROUND: While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice.
OBJECTIVES: We report on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. We aimed to 1) specify how intervention components can be delivered; 2) evaluate the feasibility and acceptability of the program; 3) describe the final program in a standardized manner.
DESIGN: To develop and model the intervention, we applied multiple study methods including a literature review, expert discussions and individual and group interviews with nursing home staff and management. We recruited participants through convenience sampling.
SETTING AND PARTICIPANTS: Management and staff (n = 17) from five nursing homes in Flanders (Belgium), a multidisciplinary expert group and a palliative care nurse-trainer.
METHODS: The work was carried out by means of 1) operationalization of key intervention components-identified as part of a previously developed theory on how advance care planning is expected to lead to its desired outcomes in nursing homes-into specific activities and materials, through expert discussions and review of existing advance care planning programs; 2) evaluation of feasibility and acceptability of the program through interviews with nursing home management and staff and expert revisions; and 3) standardized description of the final program according to the TIDieR checklist. During step 2, we used thematic analysis.
RESULTS: The original program with nine key components was expanded to include ten intervention components, 22 activities and 17 materials to support delivery into routine nursing home care. The final ACP+ program includes ongoing training and coaching, management engagement, different roles and responsibilities in organizing advance care planning, conversations, documentation and information transfer, integration of advance care planning into multidisciplinary meetings, auditing, and tailoring to the specific setting. These components are to be implemented stepwise throughout an intervention period. The program involves the entire nursing home workforce. The support of an external trainer decreases as nursing home staff become more autonomous in organizing advance care planning.
CONCLUSIONS: The multicomponent ACP+ program involves residents, family, and the different groups of people working in the nursing home. It is deemed feasible and acceptable by nursing home staff and management. The findings presented in this paper, alongside results of the subsequent randomized controlled cluster trial, can facilitate comparison, replicability and translation of the intervention into practice.
BACKGROUND: Palliative sedation for existential suffering (PS-ES) is a controversial clinical intervention. Empirical studies about physicians' perceptions do not converge in a clear position and current clinical practice guidelines do not agree either regarding this kind of intervention.
AIM: To gain deeper insight into physicians' perceptions of PS-ES, the factors influencing it, the conditions for implementing it and the alternatives to it.
DESIGN: Systematic review of qualitative, quantitative and mixed-methods studies following the Peer Review Electronic Search Strategies and Preferred Reporting Items for Systematic Reviews and Meta-analyses protocols; quality appraisal and thematic synthesis methodology.
DATA SOURCES: Seven electronic databases (PubMed, CINAHL, Embase, Scopus, Web of Science, PsycINFO, PsycARTICLES) were exhaustively searched from inception through March 2019. Two reviewers screened paper titles, abstracts and full texts. We included only peer-reviewed journal articles published in English, French, German, Dutch, Spanish, Italian or Portuguese that focused on physicians' perceptions of PS-ES.
RESULTS: The search yielded 17 publications published between 2002 and 2017. Physicians do not hold clear views or agree if and when PS-ES is appropriate. Case-related and individual-related factors that influenced physicians' perceptions were identified. There is still no consensus regarding criteria to distinguish between necessary and sufficient conditions for invoking PS-ES. Some alternatives to PS-ES were identified.
CONCLUSIONS: To date, there is still no consensus on physicians' perceptions of PS-ES. Further research is necessary to understand factors that influence physicians' perceptions and philosophical-ethical presuppositions underlying this perceptions.
CONTEXT: While unanimity exists on using palliative sedation (PS) for controlling refractory physical suffering in end-of-life situations, using it for controlling refractory existential suffering (PS-ES) is controversial. Complicating the debate is that definitions and terminology for existential suffering are unclear, ambiguous, and imprecise, leading to a lack of consensus for clinical practice.
OBJECTIVES: To systematically identify, describe, analyze, and discuss ethical arguments and concepts underpinning the argument-based bioethics literature on palliative sedation for refractory existential suffering.
METHODS: We conducted a systematic search of the argument-based bioethics literature in PubMed, CINAHL, Embase®, The Philosopher's Index, PsycINFO®, PsycARTICLES®, Scopus, ScienceDirect, Web of Science, Pascal Francis and Cairn. We included articles published in peer reviewed journals till 31stof December 2016, written in English or French, that focused on ethical arguments related to PS-ES. We used Peer Review of Electronic Search Strategies protocol (PRESS), Preferred Reporting Items for Systematic review and Meta-Analysis (PRISMA) and The Qualitative Analysis Guide of Leuven (QUAGOL) for data extraction and synthesis of themes.
RESULTS: We identified 18 articles that met the inclusion criteria. Our analysis revealed mind-body dualism, existential suffering, refractoriness, terminal condition, and imminent death as relevant concepts in the ethical debate on PS-ES. The ethical principles of double effect, proportionality, and the four principles of biomedical ethics were used in argumentations in the PS-ES debate.
CONCLUSIONS: There is a clear need to better define the terminology used in discussions of PS-ES and to ground ethical arguments in a more effective way. Anthropological presuppositions such as mind-body dualism underpin the debate and need to be more clearly elucidated using an interdisciplinary approach.
Euthanasia was first legalised in the Netherlands in 2002, followed by similar legislation in Belgium the same year. Since the beginning, however, only the Netherlands included the possibility for minors older than 12 years to request euthanasia. In 2014, the Belgian Act legalising euthanasia was amended to include requests by minors who possess the capacity of discernment. This amendment sparked great debate, and raised difficult ethical questions about when and how a minor can be deemed competent. We conducted a systematic review of argument-based literature on euthanasia in minors. The search process followed PRISMA guidelines. Thirteen publications were included. The four-principle approach of medical ethics was used to organise the ethical arguments underlying this debate. The justification for allowing euthanasia in minors is buttressed mostly by the principles of beneficence and respect for autonomy. Somewhat paradoxically, both principles are also used in the literature to argue against the extension of legislation to minors. Opponents of euthanasia generally rely on the principle of non-maleficence. CONCLUSION: The present analysis reveals that the debate surrounding euthanasia in minors is at an early stage. In order to allow a more in-depth ethical discussion, we suggest enriching the four-principle approach by including a care-ethics approach. What is Known: * The Netherlands and Belgium are the only two countries in the world with euthanasia legislation making it possible for minors to receive euthanasia. * This legislation provoked great debate globally, with ethical arguments for and against this legislation. What is New: * A systematic description of the ethical concepts and arguments grounding the debate on euthanasia in minors, as reported in the argument-based ethics literature. * A need has been identified to enrich the debate with a care-ethics approach to avoid oversimplifying the ethical decision-making process.
Cet article présente les résultats d'une étude menée dans le but de déterminer la prévalence, les étapes de la mise en place, les positions et le discours des politiques éthiques rédigés au sujet de l'euthanasie et mis en oeuvre dans les maisons de soins flamandes.