Health and social care professional views on decision-making for place of a child’s end-of-life care

Background: Decision-making pertaining to the place of a child’s end-of-life care is poorly understood. The factors affecting co-decision, or shared decision-making, between health and social care professionals (HSCPs), parents, and their children have not previously been explored. The present study aimed to understand HSCP views on the key components of decision-making regarding the place of end-of-life care of a child across three different settings: home, hospital, and hospice.
Methods: HSCPs with experience delivering end-of-life care across the island of Ireland were recruited for focus group interviews. Semi-structured topic guides were used to facilitate the focus group discussions. Thematic analysis of transcripts was undertaken to identify key tenets of the decision-making process.
Results: Three focus groups were conducted with HSCPs (n=17) from six children’s palliative care services. HSCPs across different settings held differing opinions of where a child should receive their end-of-life care, often dependent on the condition of the child and the risks involved in home care. HSCPs perceived palliative care communications to be difficult and subject to their own experience-based personal biases. Parents were perceived to advocate for a child’s wishes even in cases where these wishes were against medical advice. HSCPs strove to meet parent expectations but struggled between empowering parents and assisting parents in making a safe and practical decision.
Conclusions: The choice of setting for a child’s end-of-life care is a shared decision between families and HSCPs. Parent autonomy is dependent on risk to the child, the appropriateness of preferred setting, and the personal bias of HSCPs. Further training for generalist HSCPs is required to bolster confidence in staff to communicate with parents, and facilitate informed, shared decision-making.