Advance Care Planning in Pediatric Serious Illness: Centering in the Family Experience

As advancements enable us to manage increasingly complex pediatric illness, we must be purposeful in ensuring that we meet patient and family goals. In this issue of Pediatrics, Thompkins et al¹  examine the impact of an advanced care planning intervention, the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC), on families’ assessment of their experiences in caregiving and on familial distress. The FACE-TC is a National Cancer Institute–recognized evidence-based intervention developed to foster goals of care discussions and completion of advanced directives between adolescent patients and their families.^1,2  The authors conducted a multicentered randomized control trial with adolescents and young adults with cancer, along with their families, over 3 years. Patient-family dyads received either 3 weekly structured sessions through the FACE-TC intervention or treatment as usual. Participants in the FACE-TC intervention had a statistically significant increase in positive estimations of their caregiving, with no notable difference in distress. The authors hope the study results will provide added assurance that this intervention designed to support families has more potential to help than to harm.

Pediatric palliative care addresses the fundamental importance of understanding patients’ and families’ goals and values during the trajectory of serious illness and takes a proactive approach to minimizing suffering throughout this trajectory.³  Advance care planning emerged as a medical practice and legal entity in the late 1960s, as more concerted efforts were made to address and document the wishes of individuals with life-threatening illness as they approached the end of life.^4,5  The value of advance care planning has been well described in patients with a variety of serious illness,⁶  with evidence demonstrating that engaging in such conversations can lead to a greater sense of empowerment in patients, improve their quality of life, and potentially decrease their worries about the future.^6,7  However, clinicians often miss opportunities to engage their patients in advanced care planning, either because of the lack of a structured approach to these discussions, concern for the emotions the discussions will stir in patients and families, or both.⁸  Given that cancer is the leading disease-related cause of death for children >1 year old in the United States,⁹  there is immense value in furthering our understanding of how we can effectively engage these patients and their families in conversations that may ultimately have a positive effect on how these children live with and die of their disease.

An important strength of the study by Thompkins et al¹  is its generalizability, based on the sample size and enrollment from 4 sites. It is reassuring that the intervention did not evoke emotional reactions more than the standard of care did and that no adverse events were reported. Furthermore, FACE-TC participants were more likely to state that the intervention “was useful,” “was helpful,” or was “something I needed to do.”

Perhaps unsurprisingly, caregivers participating in this study whose children were in active treatment were more likely to experience caregiver strain. Of additional note, families of color experienced more distress. At a time when we are moving to understand more deeply health disparities and the impact of structural racism, we must pay attention to these types of differences to achieve greater equity in patient outcomes. Historical wrongs that have led to mistrust of the medical system,¹⁰  along with socioeconomic stressors that disproportionately affect families of color, could have an impact on how these families receive and experience advanced care planning conversations. A future step in exploring the utility of FACE-TC would be to gain an understanding of how its efficacy can be assured across racial and ethnic groups.

With the authors’ acknowledgment of steps that must be taken to determine its feasibility in the clinical setting on a broader scale, this intervention is well poised for practical impact in pediatric oncology and beyond. Indeed, a thoughtful approach to engaging in critical conversations that occur in stages has the power to build trust within the clinician-patient relationship and in turn to positively shape the well-being of our most vulnerable patients and families at times when they most need their health care providers. In fact, as we continue to push the envelope of advanced therapies and disease-directed trials, one can argue that this approach should be our standard: to consider our patients’ and families’ perspectives despite our own discomfort. The work by Thompkins et al¹  reminds us that as we become less afraid to engage in difficult conversations with our patients using well-validated approaches, we justly uphold our oath to strive for beneficence and avoid maleficence. Interventions like FACE-TC may help us to understand our patients better despite their background and life experience, strengthening the patient-clinician connection and the quality of care we provide.

FACE-TC

Family-Centered Advance Care Planning for Teens with Cancer