Dissertation Sarah Eaton

Abstract
Shared decision-making (SDM) is currently the most widely endorsed approach to make medical decisions with patients and their families. It is considered the “pinnacle” of patient-centered care. However, its implementation remains limited in pediatrics. The cause of its limited use is multifactorial: 1) there are various, sometimes conflicting, definitions of SDM, 2) there is no consensus on what processes constitute quality SDM, 3) most existing models of SDM were created in the context of competent, autonomous, adult patients, 4) medical decision-making in pediatrics is more complex than adult SDM models account for, due to the parents being the primary decision makers and the limitation of their decisional authority by the best interest standard (BIS) and harm principle, and 4) there is a lack of training for SDM in the medical curriculum in general medicine and pediatrics.

In this thesis, I sought to propose solutions to these four issues to facilitate the implementation of SDM in pediatrics. In my first paper, I argue for the need to and propose how best to incorporate SDM training into the mandatory medical education curriculum, from pre-graduate to postgraduate training, with an emphasis on pediatrics. In my second paper, I propose the first consensus model and definition for pediatric SDM that considers the complexities of medical decision-making specific to pediatrics. In this paper I also discuss areas of disagreement amongst experts, such as what factors should be considered when determining the role of the child in decision-making. These areas warrant further research as they have important implications for clinical practice in pediatrics. In my final paper, I propose the first consensus guideline for communicating and collaborating with families during pediatric ECMO therapy. Collaborating with families during ECMO therapy is difficult because institutional policies vary on patient candidacy for ECMO, and parents do not have the decisional authority to request the use or continuation of ECMO, if the child’s physicians deem it inappropriate, as it is a limited and highcost resource. Otherwise stated, physicians can deny or discontinue ECMO, sometimes resulting in patient death, against parental wishes. SDM exists as a spectrum, and while parents may not have the decisional authority to determine the clinical appropriateness of the use of ECMO, there is still room to collaborate with families and involve them in their child’s care and medical decisions during ECMO therapy.

Sarah Eaton