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.