Parents frequently attempt to shield their children from distressing prognostic information. Pediatric oncology providers sometimes follow parental request for non-disclosure of prognostic information to children, invoking what we call the stability of the family argument. They believe that if they inform the child about terminal prognosis despite parental wishes, cohesion and family structure will be severely hampered. In this paper, we argue against parental request for non-disclosure. Firstly, we present the stability of the family argument in more detail. We, then, (...) set out the (conceptual, legal, systemic) entitativity of the family and the kind of value the stability of the family argument assumes, before we set on to critically evaluate the argument. Our analysis shows that disclosure of prognostic information to children does not necessarily destabilize the family to a greater extent than non-disclosure. In fact, a systemic perspective suggests that mediated disclosure is more likely to result in a (long-term) stability of the family than non-disclosure. It is in the interest of the family to resist the initial aversive reaction to delivering bad news. In the final part, we draw a set of recommendations on how to facilitate decision-making in face of parental request for non-disclosure. (shrink)

Background There is considerable variation in the functionality of bioethical services in different institutions and countries for children in hospital, despite new challenges due to increasing technology supports for children with serious illness and medical complexity. We aimed to understand how bioethics services address bioethical concerns that are increasingly encountered in paediatric intensive care. Methods A qualitative descriptive design was used to describe clinician’s perspectives on the functionality of clinical bioethics services for paediatric intensive care units. Clinicians who were members (...) of formal or informal clinical bioethics groups, or who were closely involved with the process of working through ethically challenging decisions, were interviewed. Interviews took place online. Resulting transcripts were analysed using thematic analysis. Results From 33 interviews, we identified four themes that described the functionality of bioethics services when a child requires technology to sustain life: striving for consensus; the importance of guidelines; a structure that facilitates a time-sensitive and relevant response; and strong leadership and teamwork. Conclusions Clinical bioethics services have the potential to expand their role due to the challenges brought by advancing medical technology and the increasing options it brings for treatment. Further work is needed to identify where and how bioethics services can evolve and adapt to fully address the needs of the decision-makers in PICU. (shrink)

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. (shrink)

Caring for children with cancer involves complex ethical challenges. Ethics Case Reflection (ECR) rounds can be offered to support teams to reflect on challenges and what should be done in patient care. A training course, for facilitators of ECR rounds, has been offered to healthcare professionals (HCPs) in childhood cancer care by a Nordic working group on ethics. During/after the course, the trainees implemented and facilitated ECR rounds in their clinical setting. The aim was to explore the trainees’ experiences of (...) implementing ECR rounds in childhood cancer care. HCPs, who participated as trainees in the course, participated in 3 focus group interviews (n = 22) and 27 individual interviews (n = 17). Interview data were analysed concurrently with data collection following classic grounded theory. Positioning ethics is the core category in this study, used to resolve the main concern of doing ethics in a context where direct patient care is prioritized. Being able to take time for ethics reflections, not perceived as the key priority, was considered a luxury in the clinical setting. Strategies for positioning ethics include allying, promoting ethics reflection, scheduling ethics reflection, and identifying ethical dilemmas. These strategies can be more or less successful and vary in intensity. The prioritisation of direct patient care is not surprising, but polarisation between care and ethics needs to be questioned and ethics reflection need to be integrated in standard care. Ethical competence seems to be central in doing ethics and more knowledge on the promotion of ethical competence in practice and education is needed. (shrink)