The ethics of informed consent and shared decision-making in pediatric surgery

Abstract

Informed consent is a required feature in the practice of pediatric surgery. Surgeons cannot practice the trade without it and most of us learned to do it as part of our "apprenticeship" in surgical training. We were bystanders when the senior resident or attending spoke to the patient and family and we were silent witnesses to the signing of the document called a "consent." Intentional instruction about informed consent is rudimentary in most residencies. By the time we become surgical fellows, it is assumed that we have the requisite skill set to perform this "task" so we can get on with what we like to do best; operating. For many, it is viewed as a perfunctory step which, if done properly, will comply with hospital policies, might someday be exhibited during medical litigation, and ultimately it will occupy a tiny bit of memory in the hospital EMR system. However, this "thing" called the informed consent is much more than an item on a pre-op check list. The re-branding of the term "informed consent" into "shared decision-making" underscores the "re-evolution" that has occurred in thought and practice from the act of obtaining an individual's permission for treatment toward the process leading up to that act.¹ It reflects some of our most important ethical values in healthcare and is still the source of scholarly inquiry and controversy. In this paper, the terms "informed consent" and "shared decision-making" will be used interchangeably but the intention is focused on the process of how physicians and their patients make choices together. If you have not thought about this topic recently, I encourage you to take a moment and explore some of the interesting and challenging questions which are still unanswered. Although the ethical principles underlying informed consent are shared by adult and pediatric medicine, there are many aspects which are unique to the medical care of children. This article highlights some of those challenges and controversies illustrated by two case studies and viewed through the lens of bioethics.

Keywords: Assent; Informed consent; Mature minor; Shared decision-making; Surrogate.