Perceptions of important outcomes of moral case deliberations: a qualitative study among healthcare professionals in childhood cancer care

Abstract

BACKGROUND: In childhood cancer care, healthcare professionals must deal with several difficult moral situations in clinical practice. Previous studies show that morally difficult challenges are related to decisions on treatment limitations, infringing on the child's integrity and growing autonomy, and interprofessional conflicts. Research also shows that healthcare professionals want ethics support to help them deal with morally difficult situations. Moral case deliberations (MCDs) are one example of ethics support. The aim of this study was to describe MCD related outcomes that HCPs in childhood cancer care considered important to achieve, before MCDs were implemented, in order to support them in handling moral challenges in every day clinical practice.METHODS: This study is based on qualitative data. Healthcare professionals, mostly representing registered nurses, nursing assistants and physicians, working at childhood cancer care centres in Sweden, were invited to respond to the translated and content-validated European Moral Case Deliberation questionnaire, before participating in regular MCDs. The main open-ended question included in the questionnaire was analysed according to systematic text condensation. RESULTS: Data was collected from 161 responses from the healthcare professionals who were invited to participate. The responses included healthcare professionals’ perceptions of which MCD-related outcomes they found important for handling moral challenges. Three different themes of important outcomes from the analysis of the data are presented as follows: Inter-professional wellbeing, Being in a professional comfort zone, and Improved quality of care. The themes are related to teams, individuals and care, respectively.CONCLUSIONS: Healthcare professionals in childhood cancer care considered it important that ethics support could enhance the well-being of interprofessional teams, support healthcare professionals on an individual level and improve quality of care. The results of this study can be used for information in future training for MCD-facilitators. When knowing the context specific important MCD-outcomes, the sessions could be adapted. Managers in childhood cancer care would benefit from knowing about the specific important outcomes for their target group because they could then tailor the conditions. Finally, this study contributes to the reflection upon and evaluation of appropriate CESS outcomes in general.

In the name of the family? Against parents’ refusal to disclose prognostic information to children

“…Lastly, pediatric oncology providers appreciate the importance of moral and practical competence (Weiner et al 2020). For example, you need to understand the complexity of moral challenges, identify the essence of the moral challenge, know what information to convey to the child and their family and be "brave and confident enough to speak up and support others to also express their opinions on moral grounds" (Weiner et al 2020, p. 9).…”

“…The image of the family as a unified body is regularly applied to prognostic disclosure in the pediatric setting. Various characteristics of the family as a whole are highlighted as determining considerations for shaping DM: "autonomy of the family unit" and "overall family goals" (Katz and Webb 2016), "importance of the family unit" (Cummings and Mercurio 2010), "family situation" and "sovereignty of the family unit" (Jeremic et al 2016;Weiner et al 2020), "psychosocial recovery of the family" (Whittam 1993), "family privacy" (Lantos 1996), "stable system of social support provided by the family" (Sigman et al 1993), "family structure" and "family considerations" (Sisk et al 2016), and "effects of a decision on all family members" (Harrison et al 1997). Historically, the concern that "disclosure could upset the family structure" has been apostrophized as one argument against disclosure (Sisk et al 2016).…”

“…We will, then, evaluate the family argument, before, in the final part, we will draw a set of recommendations on how to facilitate maneuvering through the difficulties of parental non-disclosure requests. This is crucial because pediatric oncology providers find it important to increase their moral competencies in challenging situations, such as poor prognoses and family's feelings of shock (Weiner et al 2020).…”