Moral dilemmas and ethics support in childhood cancer care : a relational perspective

Abstract

Background: Despite the high survival rate, childhood cancers are still life-threatening diseases that affect everyone involved. The child’s treatment period is intensive and highly specialised, involving various procedures. Considering the child's best interests while completing treatment can be quite a challenge for healthcare professionals, parents, and the child; especially when opinions differ. Research on moral dilemmas from children's and parents' perspectives in childhood cancer care is sparse.

Aim: The overall aim of this thesis was to gain empirical knowledge and a broader understanding of clinical ethics in childhood cancer care. This is done by exploring moral dilemmas among healthcare professionals, parents and children, and healthcare professionals' perceptions of important outcomes of moral case deliberations.

Methods: Studies I and II used a systematic text condensation for analysis. In study I, facilitators schedules, including moral questions which healthcare professionals reflected upon during moral case deliberations, were analysed. In study II, an open-ended question about outcomes of moral case deliberations answered by healthcare professionals, were analysed. In study III, a Grounded Theory was used to analyse focus groups interviews with parents and how they handle morally difficult situations. In study IV, a Content Analysis was used to explore important values and moral dilemmas through focus groups and individual interviews with children.

Results: Healthcare professionals’ moral questions included: ‘What is the limit of healthcare professionals’ responsibilities?’, ‘Who has a mandate to decide on care?’, and ‘What is the right care action to take?’. Healthcare professionals have great trust in that ethics support will promote; Interprofessional well-being, professional comfort and improved quality of care. Parents ‘Sheltering in chaos’ when they ‘Bring the child through a lifesaving trajectory’ and ‘familiarity’ emerged as a facilitating factor to handle moral challenges. Children’s moral dilemmas included: ‘Should I consider others or not?’ ‘Should I rest or not’ and ‘Should I endure treatment and pain or not?’.

Conclusions: Within the triad of relationships, various moral dilemmas arise that must be considered and decided upon. The quality of the triad of relationships is important and targeted support needs to be offered to reduce the moral burden.