Specialized expertise among healthcare professionals in palliative care - A scoping review.

BACKGROUND: The generalist-plus-specialist palliative care model is endorsed worldwide. In the Netherlands, the competencies and profile of the generalist provider of palliative care has been described on all professional levels in nursing and medicine. However, there is no clear description of what specialized expertise in palliative care entails, whereas this is important in order for generalists to know who they can consult in complex palliative care situations and for timely referral of patients to palliative care specialists. OBJECTIVE: To gain insight in the roles and competencies attributed to palliative care specialists as opposed to generalists. METHODS: A scoping review was completed based on PRISMA-ScR guidelines to explore the international literature on the role and competence description of specialist and expert care professionals in palliative care. Databases Embase.com, Medline (Ovid), CINAHL (Ebsco) and Web of Science Core Collection were consulted. The thirty-nine included articles were independently screened, reviewed and charted. Thematic codes were attached based on two main outcomes roles and competencies. RESULTS: Five roles were identified for the palliative care specialist: care provider, care consultant, educator, researcher and advocate. Leadership qualities are found to be pivotal for every role. The roles were further specified with competencies that emerged from the analysis. The title, roles and competencies attributed to the palliative care specialist can mostly be applied to both medical and nursing professionals. DISCUSSION: The roles and competencies derived from this scoping review correspond well with the seven fields of competence for medical/nursing professionals in health care of the CanMEDS guide. A specialist is not only distinguished from a generalist on patient-related care activities but also on an encompassing level. Clarity on what it entails to be a specialist is important for improving education and training for specialists. CONCLUSION: This scoping review adds to our understanding of what roles and competencies define the palliative care specialist. This is important to strengthen the position of the specialist and their added value to generalists in a generalist-plus-specialist model.

Promising for patients or deeply disturbing? The ethical and legal aspects of deepfake therapy.

Deepfakes are hyper-realistic but fabricated videos created with the use of artificial intelligence. In the context of psychotherapy, the first studies on using deepfake technology are emerging, with potential applications including grief counselling and treatment for sexual violence-related trauma. This paper explores these applications from the perspective of medical ethics and health law. First, we question whether deepfake therapy can truly constitute good care. Important risks are dangerous situations or 'triggers' to the patient during data collection for the creation of a deepfake, and when deepfake therapy is started, there are risks of overattachment and blurring of reality, which can complicate the grieving process or alter perceptions of perpetrators. Therapists must mitigate these risks, but more research is needed to evaluate deepfake therapy's efficacy before it can be used at all. Second, we address the implications for the person depicted in the deepfake. We describe how privacy and portrait law apply and argue that the legitimate interests of those receiving therapy should outweigh the interests of the depicted, as long as the therapy is an effective and 'last resort' treatment option, overseen by a therapist and the deepfakes are handled carefully. We suggest specific preventative measures that can be taken to protect the depicted person's privacy. Finally, we call for qualitative research with patients and therapists to explore dependencies and other unintended consequences. In conclusion, while deepfake therapy holds promise, the competing interests and ethicolegal complexities demand careful consideration and further investigation alongside the development and implementation of this technology.

[Shared decision-making in acute life-threatening situations: two cases]. / Gezamenlijke besluitvorming bij acuut levensbedreigende situaties.

When making critical treatment decisions, shared decision-making (SDM) between healthcare providers and patients is essential. SDM involves discussing care options, considering patient preferences, and ensuring decisions align with patient values and medical conditions. This process becomes challenging in life-threatening emergencies, where time constraints hinder thorough discussions and coordination among healthcare providers, potentially leading to inappropriate care. Two cases highlight these challenges. Patient A, a 76-year-old man with acute aortic dissection, underwent surgery without comprehensive SDM, resulting in unsuccessful outcomes and questioning the appropriateness of the intervention. Patient B, an 84-year-old man with heart failure and COPD, received palliative care following thorough SDM and multidisciplinary consultation, leading to a dignified end-of-life experience. We conclude that effective communication and multidisciplinary collaboration are crucial for SDM, even in acute settings. Recommendations include creating space for thorough discussions, involving all relevant healthcare providers, and integrating palliative care as a serious treatment option. This approach ensures patient-centered care and aligns medical interventions with the patient's values and needs.

[A prescription for yourself or acquaintances, a good idea?] / Een recept voor jezelf of een bekende, een goed idee?

Many doctors regularly write a prescription for themselves or for family members or friends. In this article, we discuss the legal and ethical considerations surrounding these prescriptions. We also discuss the role of the pharmacist who receives the prescription. Although there is no legal obstacle, codes of conduct and guidelines state that prescribing to acquaintances or yourself is undesirable, especially because it is often not possible to maintain sufficient professional distance, necessary to provide proper treatment. If the GP or other care providers have no knowledge of the prescription and no medical file is kept, undesirable situations may arise for the patient. A prescription for yourself or acquaintances can be made occasionally and under special circumstances (acute situation, no serious problem, short-term), but then requires a quick transfer of treatment to regular practitioners.

Generalist, specialist, or expert in palliative care? A cross-sectional open survey on healthcare professionals' self-description.

BACKGROUND: In the Netherlands, palliative care is provided by generalist healthcare professionals (HCPs) if possible and by palliative care specialists if necessary. However, it still needs to be clarified what specialist expertise entails, what specialized care consists of, and which training or work experience is needed to become a palliative care specialist. In addition to generalists and specialists, 'experts' in palliative care are recognized within the nursing and medical professions, but it is unclear how these three roles relate. This study aims to explore how HCPs working in palliative care describe themselves in terms of generalist, specialist, and expert and how this self-description is related to their work experience and education. METHODS: A cross-sectional open online survey with both pre-structured and open-ended questions among HCPs who provide palliative care. Analyses were done using descriptive statistics and by deductive thematic coding of open-ended questions. RESULTS: Eight hundred fifty-four HCPs filled out the survey; 74% received additional training, and 79% had more than five years of working experience in palliative care. Based on working experience, 17% describe themselves as a generalist, 34% as a specialist, and 44% as an expert. Almost three out of four HCPs attributed their level of expertise on both their education and their working experience. Self-described specialists/experts had more working experience in palliative care, often had additional training, attended to more patients with palliative care needs, and were more often physicians as compared to generalists. A deductive analysis of the open questions revealed the similarities and distinctions between the roles of a specialist and an expert. Seventy-six percent of the respondents mentioned the importance of having both specialists and experts and wished more clarity about what defines a specialist or an expert, how to become one, and when you need them. In practice, both roles were used interchangeably. Competencies for the specialist/expert role consist of consulting, leadership, and understanding the importance of collaboration. CONCLUSIONS: Although the grounds on which HCPs describe themselves as generalist, specialist, or experts differ, HCPs who describe themselves as specialists or experts mostly do so based on both their post-graduate education and their work experience. HCPs find it important to have specialists and experts in palliative care in addition to generalists and indicate more clarity about (the requirements for) these three roles is needed.

Does a lack of emotions make chatbots unfit to be psychotherapists?

Mental health chatbots (MHCBs) designed to support individuals in coping with mental health issues are rapidly advancing. Currently, these MHCBs are predominantly used in commercial rather than clinical contexts, but this might change soon. The question is whether this use is ethically desirable. This paper addresses a critical yet understudied concern: assuming that MHCBs cannot have genuine emotions, how this assumption may affect psychotherapy, and consequently the quality of treatment outcomes. We argue that if MHCBs lack emotions, they cannot have genuine (affective) empathy or utilise countertransference. Consequently, this gives reason to worry that MHCBs are (a) more liable to harm and (b) less likely to benefit patients than human therapists. We discuss some responses to this worry and conclude that further empirical research is necessary to determine whether these worries are valid. We conclude that, even if these worries are valid, it does not mean that we should never use MHCBs. By discussing the broader ethical debate on the clinical use of chatbots, we point towards how further research can help us establish ethical boundaries for how we should use mental health chatbots.

The Diversity Compass: a clinical ethics support instrument for dialogues on diversity in healthcare organizations.

BACKGROUND: Increasing social pluralism adds to the already existing variety of heterogeneous moral perspectives on good care, health, and quality of life. Pluralism in social identities is also connected to health and care disparities for minoritized patient (i.e. care receiver) populations, and to specific diversity-related moral challenges of healthcare professionals and organizations that aim to deliver diversity-responsive care in an inclusive work environment. Clinical ethics support (CES) services and instruments may help with adequately responding to these diversity-related moral challenges. However, although various CES instruments exist to support healthcare professionals with dealing well with morally challenging situations in healthcare, current tools do not address challenges specifically related to moral pluralism and intersectional aspects of diversity and social justice issues. This article describes the content and developmental process of a novel CES instrument called the Diversity Compass. This instrument was designed with and for healthcare professionals to dialogically address and reflect on moral challenges related to intersectional aspects of diversity and social justice issues that they experience in daily practice. METHODS: We used a participatory development design to develop the Diversity Compass at a large long-term care organization in a major city in the Netherlands. Over a period of thirteen months, we conducted seven focus groups with healthcare professionals and peer-experts, carried out five expert interviews, and facilitated four meetings with a community of practice consisting of various healthcare professionals who developed and tested preliminary versions of the instrument throughout three cycles of iterative co-creation. RESULTS: The Diversity Compass is a practical, dialogical CES instrument that is designed as a small booklet and includes an eight-step deliberation method, as well as a guideline with seven recommendations to support professionals with engaging in dialogue when they are confronted with diversity-related moral challenges. The seven recommendations are key components in working toward creating an inclusive and safe space for dialogue to occur. CONCLUSIONS: The Diversity Compass seeks to support healthcare professionals and organizations in their efforts to facilitate awareness, moral learning and joint reflection on moral challenges related to diversity and social justice issues. It is the first dialogical CES instrument that specifically acknowledges the role of social location in shaping moral perspectives or experiences with systemic injustices. However, to make healthcare more just, an instrument like the Diversity Compass is not enough on its own. In addition to the Diversity Compass, a systemic and structural approach to social justice issues in healthcare organizations is needed in order to foster a more inclusive, safe and diversity-responsive care and work environment in health care organizations.

Translational bioethics as a two-way street. Developing clinical ethics support instruments with and for healthcare practitioners.

This article discusses an approach to translational bioethics (TB) that is concerned with the adaptation-or 'translation'-of concepts, theories and methods from bioethics to practical contexts, in order to support 'non-bioethicists', such as researchers and healthcare practitioners, in dealing with their ethical issues themselves. Specifically, it goes into the participatory development of clinical ethics support (CES) instruments that respond to the needs and wishes of healthcare practitioners and that are tailored to the specific care contexts in which they are to be used. The theoretical underpinnings of this participatory approach to TB are found in hermeneutic ethics and pragmatism. As an example, the development of CURA, a low-threshold CES instrument for healthcare professionals in palliative care, is discussed. From this example, it becomes clear that TB is a two-way street. Practice may be improved by means of CES that is effectively tailored to specific end users and care contexts. The other way around, ethical theory may be enriched by means of the insights gained from engaging with practice in developing CES in a process of co-creation. TB is also a two-way street in the sense that it requires collaboration and commitment of both bioethicists and practitioners, who engage in a process of mutual learning. However, substantial challenges remain. For instance, is there a limit to the extent to which a method of moral reasoning can be adapted in order to meet the constraints of a given healthcare setting? Who is to decide, the bioethicist or the practitioners?

Effectiveness of CURA: Healthcare professionals' moral resilience and moral competences.

Background: Clinical ethics support instruments aim to support healthcare professionals in dealing with moral challenges in clinical practice. CURA is a relatively new instrument tailored to the wishes and needs of healthcare professionals in palliative care, especially nurses. It aims to foster their moral resilience and moral competences.Aim: To investigate the effects of using CURA on healthcare professionals regarding their Moral Resilience and Moral Competences.Design: Single group pre-/post-test design with two questionnaires.Methods: Questionnaires used were the Rushton Moral Resilience Scale measuring Moral Resilience and the Euro-MCD, measuring Moral Competences. Respondents mainly consisted of nurses and nurse assistants who used CURA in daily practice. Forty-seven respondents contributed to both pre- and post-test with 18 months between both tests. Analysis was done using descriptive statistics and Wilcoxon signed rank tests. This study followed the SQUIRE checklist.Ethical considerations: This study was approved by the Institutional Review Board of Amsterdam UMC. Informed consent was obtained from all respondents.Results: The total Moral Resilience score and the scores of two subscales of the RMRS, that is, Responses to Moral Adversity and Relational Integrity, increased significantly. All subscales of the Euro-MCD increased significantly at posttest. Using CURA more often did not lead to significant higher scores on most (sub) scales.Conclusion: This study indicates that CURA can be used to foster moral resilience and moral competences of healthcare professionals. CURA therefore is a promising instrument to support healthcare professionals in dealing with moral challenges in everyday practice.

Fostering moral resilience through moral case deliberation.

Moral distress forms a major threat to the well-being of healthcare professionals, and is argued to negatively impact patient care. It is associated with emotions such as anger, frustration, guilt, and anxiety. In order to effectively deal with moral distress, the concept of moral resilience is introduced as the positive capacity of an individual to sustain or restore their integrity in response to moral adversity. Interventions are needed that foster moral resilience among healthcare professionals. Ethics consultation has been proposed as such an intervention. In this paper, we add to this proposition by discussing Moral Case Deliberation (MCD) as a specific form of clinical ethics support that promotes moral resilience. We argue that MCD in general may contribute to the moral resilience of healthcare professionals as it promotes moral agency. In addition, we focus on three specific MCD reflection methods: the Dilemma Method, the Aristotelian moral inquiry into emotions, and CURA, a method consisting of four main steps: Concentrate, Unrush, Reflect, and Act. In practice, all three methods are used by nurse ethicists or by nurses who received training to facilitate reflection sessions with these methods. We maintain that these methods also have specific elements that promote moral resilience. However, the Dilemma Method fosters dealing well with tragedy, the latter two promote moral resilience by including attention to emotions as part of the reflection process. We will end with discussing the importance of future empirical research on the impact of MCD on moral resilience, and of comparing MCD with other interventions that seek to mitigate moral distress and promote moral resilience.

Training nurses to facilitate and implement CURA in palliative care institutions: development and evaluation of a blended learning program.

BACKGROUND: Healthcare professionals in palliative care are found to be confronted with moral challenges on a frequent basis. CURA is a low-threshold instrument for dialogical ethical reflection that was developed to deal with these challenges. A previous study identified the need of healthcare professionals to be trained to introduce CURA in their organization, initiate and facilitate reflections with CURA, and contribute to the implementation of CURA. The aim of this study was to develop and evaluate a training for professionals to become 'CURA-ambassadors'. METHODS: The training was developed in a participatory way in two cycles. We trained 72 healthcare professionals. The training was evaluated by means of a questionnaire and six semi-structured interviews. RESULTS: The study resulted in a blended learning training combining training sessions with an e-module and with practicing with organizing and facilitating CURA in daily healthcare practice. The main objectives of the training are to enable CURA-ambassadors to introduce CURA within their organization, initiate and facilitate ethical reflections using CURA, and contribute to the implementation of CURA. Participants were generally positive about the training program and the trainers. Technical difficulties related to the e-module were mentioned as main point of improvement. DISCUSSION: The training program can generate ownership, responsibility, and competency among CURA-ambassadors, which are essential foundations for implementing complex interventions in healthcare practice. The training program received positive evaluations shortly after completing the program. This study adds to our understanding of what is needed for healthcare professionals to use CURA, in order to support them in dealing with moral challenges and to foster their moral resilience. Further research is needed to assess whether participants experience the training as sufficient and effective when using and implementing CURA structurally in their organizations over a longer period of time.

A care ethics approach to a reduced ability to eat.

Patients with advanced cancer often experience a reduced ability to eat, which may result in tensions between patients and family members. Often with advanced cancer diagnoses, patients' appetites decline markedly, while family members focus on nutritional intake with the hope that this will postpone death. This hope might cause tensions between the patient and family; the family may expect healthcare professionals to encourage the patient to eat more, whereas the patient needs to be supported in their reduced ability to eat. When these tensions arise, healthcare professionals can experience challenges in providing good palliative care. To address these challenges in the provision of palliative care, healthcare professionals may adopt a care ethics approach. Similar to palliative care's focus on patient and family members' relationships, a care ethics approach emphasizes interdependency and social relationships. Using Joan Tronto's care ethics approach, we conducted a normative analysis of what caring for patients with reduced ability to eat and their family members should look like. Tronto's approach includes five phases of care: caring about, taking care of, care giving, care-receiving, and caring with. Based on our analysis and empirical studies on patients with advanced cancer and family members, concerns with their lack of appetite, we assert that healthcare professionals must be mindful of the potential of tensions related to appetite and be adept in dealing with these tensions. We urge that education is needed for healthcare professionals regarding the psychosocial impact of reduced ability to eat on both patients and family members and interprofessional collaboration is of the essence.

Moral distress and positive experiences of ICU staff during the COVID-19 pandemic: lessons learned.

BACKGROUND: The COVID-19 pandemic causes moral challenges and moral distress for healthcare professionals and, due to an increased work load, reduces time and opportunities for clinical ethics support services. Nevertheless, healthcare professionals could also identify essential elements to maintain or change in the future, as moral distress and moral challenges can indicate opportunities to strengthen moral resilience of healthcare professionals and organisations. This study describes 1) the experienced moral distress, challenges and ethical climate concerning end-of-life care of Intensive Care Unit staff during the first wave of the COVID-19 pandemic and 2) their positive experiences and lessons learned, which function as directions for future forms of ethics support. METHODS: A cross-sectional survey combining quantitative and qualitative elements was sent to all healthcare professionals who worked at the Intensive Care Unit of the Amsterdam UMC - Location AMC during the first wave of the COVID-19 pandemic. The survey consisted of 36 items about moral distress (concerning quality of care and emotional stress), team cooperation, ethical climate and (ways of dealing with) end-of-life decisions, and two open questions about positive experiences and suggestions for work improvement. RESULTS: All 178 respondents (response rate: 25-32%) showed signs of moral distress, and experienced moral dilemmas in end-of-life decisions, whereas they experienced a relatively positive ethical climate. Nurses scored significantly higher than physicians on most items. Positive experiences were mostly related to 'team cooperation', 'team solidarity' and 'work ethic'. Lessons learned were mostly related to 'quality of care' and 'professional qualities'. CONCLUSIONS: Despite the crisis, positive experiences related to ethical climate, team members and overall work ethic were reported by Intensive Care Unit staff and quality and organisation of care lessons were learned. Ethics support services can be tailored to reflect on morally challenging situations, restore moral resilience, create space for self-care and strengthen team spirit. This can improve healthcare professionals' dealing of inherent moral challenges and moral distress in order to strengthen both individual and organisational moral resilience. TRIAL REGISTRATION: The trial was registered on The Netherlands Trial Register, number NL9177.

Developing Organizational Diversity Statements Through Dialogical Clinical Ethics Support: The Role of the Clinical Ethicist.

In pluralist societies, stakeholders in healthcare may have different experiences of and moral perspectives on health, well-being, and good care. Increasing cultural, religious, sexual, and gender diversity among both patients and healthcare professionals requires healthcare organizations to address these differences. Addressing diversity, however, comes with inherent moral challenges; for example, regarding how to deal with healthcare disparities between minoritized and majoritized patients or how to accommodate different healthcare needs and values. Diversity statements are an important strategy for healthcare organizations to define their normative ideas with respect to diversity and to establish a point of departure for concrete diversity approaches. We argue that healthcare organizations ought to develop diversity statements in a participatory and inclusive way in order to promote social justice. Furthermore, we maintain that clinical ethicists can support healthcare organizations in developing diversity statements in a more participatory way by fostering reflective dialogues through clinical ethics support. We will use a case example from our own practice to explore what such a developmental process may look like. We will critically reflect on the procedural strengths and challenges as well as on the role of the clinical ethicist in this example.

CURA-An Ethics Support Instrument for Nurses in Palliative Care. Feasibility and First Perceived Outcomes.

Evaluating the feasibility and first perceived outcomes of a newly developed clinical ethics support instrument called CURA. This instrument is tailored to the needs of nurses that provide palliative care and is intended to foster both moral competences and moral resilience. This study is a descriptive cross-sectional evaluation study. Respondents consisted of nurses and nurse assistants (n = 97) following a continuing education program (course participants) and colleagues of these course participants (n = 124). Two questionnaires with five-point Likert scales were used. The feasibility questionnaire was given to all respondents, the perceived outcomes questionnaire only to the course participants. Data collection took place over a period of six months. Respondents were predominantly positive on most items of the feasibility questionnaire. The steps of CURA are clearly described (84% of course participants agreed or strongly agreed, 94% of colleagues) and easy to apply (78-87%). The perceived outcomes showed that CURA helped respondents to reflect on moral challenges (71% (strongly) agreed), in perspective taking (67%), with being aware of moral challenges (63%) and in dealing with moral distress (54%). Respondents did experience organizational barriers: only half of the respondents (strongly) agreed that they could easily find time for using CURA. CURA is a feasible instrument for nurses and nurse assistants providing palliative care. However, reported difficulties in organizing and making time for reflections with CURA indicate organizational preconditions ought to be met in order to implement CURA in daily practice. Furthermore, these results indicate that CURA helps to build moral competences and fosters moral resilience.

Moral Challenges of Nurses and Volunteers in Dutch Palliative Care. A Qualitative Study.

Objective: To identify moral challenges experienced by nurses and volunteers in palliative care. Methods: A qualitative hermeneutic research design was used. Interviews with nurses (N = 10) and volunteers (N = 4) working in palliative care, in-home care, and hospice setting. Participants were recruited through maximum variation, a purposive sampling technique. Transcriptions were analyzed using qualitative thematic content analysis and open coding. Results: Two themes were identified, each with three subthemes: theme (A) Moral challenges regarding organizational and professional aspects contained the subthemes (1) dealing with protocols and regulations, (2) different professional perspectives on good care, and (3) limits of professionalism. Theme (B) Moral challenges regarding the patient and their family members contained the subthemes (1) dealing with the patient's wishes, (2) the patient's wish to die, and (3) dealing with family members. Conclusion: Nurses and volunteers working in palliative care are confronted with a wide range of moral challenges. Insight into 'real-world ethical challenges' of healthcare providers is important to provide adequate support to nurses and volunteers working in palliative care.