INTRODUCTION
The model for medical decision-making has fundamentally shifted over time. Dating back to the Hippocratic Oath, paternalism was deep-seated in medical care for centuries.1 However, the rights-based movements in the 1960s led to a shift towards patient-centered care.2 Autonomy became a founding principle of bioethics and dominated decision-making.3Following these two extremes, bioethics has attempted to find a middle ground in the 21st century, by embracing the concept of shared decision-making (SDM).4 Herein, physicians and patients work together to optimize decision-making by utilizing the values and preferences of patients and families.4-6Currently in the United States, patients are generally felt to have the ultimate autonomy to make value-based medical decisions.
Pediatric patients have a less active and more ill-defined role in decision-making. Parents or legal guardians generally make medical decisions for children under the age of 18 in the United States, while pediatric competency is determined on a case-by-case basis in Canada and Switzerland.7,8 Although emancipated minors and mature minor doctrines do exist, they are rare exceptions rather than the norm, and this status is rarely granted to preadolescents. While pediatric assent exists and is encouraged, it is usually not required for treatment under age 14, nor is it required for procedures or treatments deemed medically necessary. Assent and dissent carry little weight, thus attesting to the lack of standardized involvement of pediatric patients in decision-making.
However, many preadolescents and adolescents, particularly those with chronic disease, may be competent to make medical decisions. Pediatric decisional competency varies widely, and depends not only on age, but also on maturity and cognitive ability.9-11Furthermore, the presence of chronic illness results in improved medical decision-making competency. Children with chronic disease have an increased understanding over healthy peers and even some adults.7,12-14 Moreover, in chronic illness, medical decisions often hinge on questions of values and quality of life, rendering it even more important to involve children in these decisions.
The decision to pursue or forego pediatric lung transplantation for end-stage lung disease is one example of the complex decisions that parents make for their children. It is personal and value-laden, and varies considerably from family to family. Attitudes towards involving children in these discussions is unclear. This renders it an exemplary decision to study in the context of pediatric involvement in SDM.
In this study, we aimed to investigate physician attitudes towards involving children in decision-making surrounding lung transplantation.