Parental Ethical Decision Making and Implications for Advance Care Planning: A Systematic Review and Secondary Analysis of Qualitative Literature from England and Wales, Germany, and the Netherlands

Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make ethical decisions is an under-researched area. A possible model for parental decision making is the Ethics of Care (EoC) theory. Ethical decision making within this framework aims to preserve the caring relationship. What is right or wrong depends on the circumstances at the time. Objective: To identify the parental ethical values and determine whether parental decision making is consistent with EoC, a systematic review and secondary analysis of qualitative research from England and Wales, the Netherlands, and Germany was performed. As part of a larger project investigating conflicts between parents and clinicians about children's medical treatment, the choice of countries was determined by differences in litigation. Methods: Eight databases were searched for articles published between 2010 and 2020 reporting on at least one medical treatment decision made by parents of a child with any life-limiting condition and analyzed using reflexive thematic analysis. Twelve included articles directly addressing advance care planning (ACP) were reanalyzed to investigate whether this specific decision parents are increasingly being asked to make is also consistent with EoC. Results: Forty-three articles were included. Parents use the same 6 ethical values which, consistent with EoC, are mostly in the context of their relationship with the child. All values contributed to the previously identified theme of "being a good parent/person." Analysis of parental decision making in ACP confirmed consistency with EoC. Conclusion: The parental decision-making process is consistent with EoC. That parental decisions aim to maintain the caring relationship and are dependent on the circumstances at the time has implications for parental decision making in ACP and should be reflected in future policies.