Clinical ethics in childhood cancer care : the value of Inter-professionally shared reflection

Today’s increased survival rate, which is related to more effective treatment, contributes to new research areas. Each child’s particular situation often causes ethical issues and divergences about treatment and life and death when important values are at stake. The intense and demanding treatment often leads to new difficult situations. The overall aim of the research in this thesis was to gain empirical knowledge and a deeper understanding of ethical issues in childhood cancer care and how healthcare professionals deal with these issues.

In study I a modified model for ethical analysis of ethical problems is presented using theoretical reasoning and the study includes a discussion on pros and cons with the presented procedure. The important aspects of the presented modified model are that it explicitly focuses on values and moral principles with a case-based approach through interprofessional reflection. In study II healthcare professionals who care for children with cancer answered a study-specific questionnaire. The content analysis revealed that ethical concerns were based on health care professional’s experiences of infringing on autonomy, deciding on treatment levels and conflicting perspectives. It also revealed healthcare professionals’ desire to deal with ethical concerns through interprofessional consideration, and they expressed the need for time, personal space and ethics education. Study III is based on the responses to the Hospital Ethical Climate Scale (HECS). The paediatric hospital ethical climate is described, concluding that the ethical climate is perceived differently between professions and that the perception of being able to practice ethically good care diverged. Some items in the HECS were rated less positively than others. In study IV a Grounded Theory methodology was used. The emerging theory explains how healthcare professionals were able to consolidate care by clarifying perspectives in the context of Ethics Case Reflection (ECR) sessions which overall had positive consequences for the team.

The comparative analysis of the four studies resulted in discovering the value of inter-professionally shared reflection. An ethically justifiable care for the child can be reached by the unique knowledge, dealing with ethical conflicts, a trusting atmosphere and a consolidated care. Even if difficult ethical concerns were found and there were factors in the ethical climate that were not optimal, there seems to be a shared wish for solving ethical concerns within the team, with focus on the best interest of the child. Quality of care would possibly be improved by solving ethical concerns. However, further research is needed to explore effects on the quality of care and possible patient outcomes.

List of scientific papers

I. Bartholdson, C., Pergert, P., Helgesson, G. (2014). Procedures for clinical ethics case reflections: an example from childhood cancer care. Clinical Ethics, 9(2–3), 87–95.
https://doi.org/10.1177/1477750914546758

II. Bartholdson, C., Lützén, K., Blomgren, K., Pergert, P. (2014). Experiences of ethical issues when caring for children with cancer. Cancer Nursing, 38(2), 125-132.
https://doi.org/10.1097/NCC.0000000000000130

III. Bartholdson, C., af Sandeberg, M., Lützén, K., Blomgren, K., Pergert, P. (2015). The paediatric hospital ethical climate - perceptions in childhood cancer care. Nursing Ethics. [Accepted]

IV. Bartholdson, C., Lützén, K., Blomgren, K., Pergert, P. (2015). Clarifying perspectives: ethics case reflection sessions in childhood cancer care. Nursing Ethics.
https://doi.org/10.1177/0969733015570511