UK Paediatricians’ medical decision-making for severely disabled children: a socio-legal analysis

Abstract

This thesis aims to illuminate how paediatricians in the United Kingdom (UK) make difficult medical decisions when treating severely disabled children with complex health conditions. In particular, it examines the part played, if any, by law, rights, and ethics in those decisions. After drawing on jurisprudence of the English and European Human Rights Court, together with existing scholarship, to analyse the doctors’ decision making, this thesis adopts a legal consciousness theoretical approach. Using this it looks at how the paediatricians make sense of and conceptualise law when making these decisions. It examines how decisions are, by the paediatricians’ own accounts, commonly made at present and what the paediatricians say about how they and their colleagues make such decisions. This thesis addresses the following research questions: i) Which decisions do UK paediatricians find particularly difficult when working with disabled children and what makes those decisions particularly difficult? ii) What factors do UK paediatricians take into consideration when making difficult decisions for disabled children and what weight do they put on those factors? iii) What formal education in law, rights, and ethics have the doctors received and to what extent, if any, can we discern how this education impacts on their difficult decisions for disabled children? iv) How do UK paediatricians construct and understand the law, rights, and ethics when making their difficult decisions? This thesis makes an original contribution, being the first in-depth socio-legal study examining UK paediatricians’ medical decision-making for severely disabled children, by identifying two distinct styles paediatricians adopt when approaching best interest decisions, and by recommending a new category of legal consciousness. It concludes by recommending research and changes both in doctors’ training and approach to best interest decision-making to address the current challenges paediatricians describe facing when deciding for severely disabled children.