Healthcare decision-making for children with medical complexity: Combating breakdown of trust by building relationships

‘Proxy’ decision-making by parents relating to their child’s health and care is a function of the legal power vested in them as an aspect of their parental responsibility. Yet professionals are also tasked with the mandate to act in accordance with the child’s best interests. The triadic dynamic between professional, child patient, and parents can represent one of the most challenging relationships in the health and care context. When interpretations of the parental and professional remits do not align, such relationships are ripe for conflict and breakdown of trust, sub-optimal decisions can be made, and patient safety can be put at risk. Drawing on the work of Moreton for the recent Nuffield Council on Bioethics Review and Report on Disagreements in the Care of Critically Ill Children (2023), and Wright’s extensive experience as Founder/Director of Born at the Right Time, qualified nurse and the parent of a young man with profound and complex neuro-disability, this chapter contends that relationship-building, theorised through a novel feminist ethic of care, is the solution to ‘bridge the gap between rhetoric and reality’. With a particular focus on the under-studied population of children with medical complexity (CMC), we utilise ‘small stories’ from parents as a methodical device, in answer to the Nuffield Report’s call for greater visibility of parental voice and experience in research on decision-making. We identify three key causes of potential conflict – complex systems, environmental influences, and internal narratives, and propose potential solutions viewed through the lens of the Ethics of Care. We consider some of the systematic and institutional changes that would be necessary to make such an approach an embedded part of NHS practice. We also demonstrate how practitioners, who are often the drivers of the relational dynamic, can learn how to understand parental perspectives and foster productive communication, whilst also positing the importance of parents understanding their responsibilities to listen and reciprocate in productive dialogue. We contend that by adopting new processes and ways of thinking in seeking to place relationship building at the centre of their practice, professionals can minimise the chances of legal action, reduce moral distress that inevitably comes as a result of entrenched disagreement, and build mutually beneficial relationships that are rightly child and family centred.