Finding their voice: Advance care planning for children and young adults without decision-making capacity

Abstract

Objectives * Explore their own personal struggles and be able to list five barriers frequently cited when considering advance care planning (ACP) for children with complex chronic conditions who cannot communicate their wishes. * Apply newly acquired concepts in ACP to their patients with complex chronic conditions and limited communication abilities. Children with severe lifelong medical complexity, resulting from a variety of causes, including birth trauma or prematurity, congenital malformations, or any number of genetic or metabolic conditions, are a growing population within children’s hospitals. Many lack the ability to communicate their wishes and fears, thus relying on others to make their most important medical decisions. Palliative care professionals may be consulted at various stages along their unpredictable trajectory. While both clinicians and families recognize the need for advance care planning (ACP) in this population, several unique characteristics of this group make such planning complex and challenging. With audience participation, we will discuss both the evidence-based and collectively identified unique medical and psychosocial aspects of this population that are often barriers to conducting advance care planning. We will then introduce a framework for ACP that has specific application to this unique population. This framework will address the cited barriers, draw upon the recognized strengths of these children and their families, and tend to the specific needs these families have expressed. Key concepts will include recognizing and addressing provider bias, promoting a focus on goals and values, early introduction and consistent usage of a benefit versus burden framework for decision-making, recognizing that this process is almost never black and white, and the importance of building trusting relationships and having ongoing conversations. We will use cases to further illustrate how this framework can be applied to some of our most challenging consults. In particular, we will explore the consideration of tracheostomy placement for chronic respiratory failure. As a group, we will practice applying these newly acquired concepts to a scenario that is both common to, and especially challenging for, many pediatric palliative care programs.