What Are the Special Communication Issues Involved in Caring for Pediatric Patients?

Differences in Pediatric and Adult Decision Making

One important difference when communicating with seriously ill pediatric patients compared to seriously ill adult patients is that the pediatric patient, in most circumstances, does not have the authority to make their own medical decisions. Decision-making authority is the legal ability to consent to treatment, or equally important, to decline recommended treatments. For pediatric patients, that authority lies with their parents who have discretion to make decisions on their child’s behalf, with some limits.

Because children are not thought to have enduring life values, parents as their surrogates rely on a “best interest” standard for making decisions for their child. Parents’ interpretation of what is in their child’s best interest is grounded in their family values and will vary across families. Parents often have significant discretion to choose among a range of options when their child is seriously ill; for example, continuing life-prolonging treatment versus prioritizing comfort over longevity.

Professional Recommendations for Including Pediatric Patients in Decision Making and Challenges

Despite the fact that children lack decisional authority, professional recommendations are unanimous that children and adolescents should be involved in conversations about their prognosis and treatment plans to the extent that is possible given their developmental stage. For children who are able to participate meaningfully, assent or an acceptance by the child of the treatment is ideal, especially if the treatment benefits do not outweigh the burdens. A central justification for this recommendation is the importance of hearing the child’s voice in decisions that impact them, and this is increasingly the case when there are no clearly successful treatment options and the burdens of disease are uniquely experienced by the child. In these cases, practice seems to follow recommendations that clinicians seek the child’s opinion and wishes. Another justification for this recommendation, particularly for patients with chronic illnesses, is to build the capacities for independent decision making, which requires the exercise of these skills over years of support from parents and clinical teams.

In practice, however, some parents wish to shield their child from information about their disease, especially if the prognosis is poor, requesting that clinicians limit communication about prognosis with the child. These requests raise ethical and practical challenges for clinicians who struggle to fulfill their duties to share with the child what they can understand (and want to know) while not alienating the parents whom clinicians must continue to partner with to care for the child.

This chapter will chronicle some of the unique aspects of communicating with both children and their parents and offer the best evidence available on the preferences of children and their parents, as well as the tools that can be utilized to optimize communication and outcomes.