Abstract
Dear Editor:
In his editorial about advance care planning (ACP), Dr. Morrison writes from the provider perspective. 1 We now share our perspective as parents of children with serious illness who have benefited from ACP with and for our child (three of us are bereaved). We write to express our firm belief that ACP in pediatrics is a vital tool and process to match patient medical care with the goals of a child and family—the true north of palliative care.
Adult ACP has been studied significantly more than pediatric ACP. But the needs of families with seriously ill children differ, particularly as parents are legally and fundamentally responsible for their child's well-being. We feel certain that pediatrically focused research would confirm our conviction, born from experience, that ACP has an important and positive impact on the family.
To the family, the primary point of ACP is to create a safe space to consider what matters most about treatment, symptom management, and quality of life. Clarifying those values helps families communicate with providers, have confidence in their choices, and reduces the inevitable fears of the unpredictable illness path as well as fear of end of life. And if, as the situation changes, patients and families adjust their plan, this is not a failure. Creating official medical orders is of secondary importance; primary is support for patient and family-centered autonomy that responds to the course of an illness and respects the profound issues families face. Although one can never be truly ready or “prepared” for the death of a child, one can feel more empowered to face it—and this orientation has an impact on what follows.
Dr. Morrison writes that “the advance directives have no discernible difference on the care received,” which focuses on the care delivered by the provider. Instead, we believe that the process of having ACP conversations makes a big difference on the care experienced. We believe the key outcomes to measure should reflect whether the patient and family felt heard, understood, and that their goals of care were respected.
In the absence of ACP as quality protocol, we worry providers would avoid such critical conversations. Although difficult for all involved, these discussions are instrumental to delivering goal-concordant care. As an accessible evidence-based tool, ACP helps frame trust-building conversations between families and providers to shape an experience that minimizes regret and maximizes healing.
Yes, the ACP process is difficult, but we see it as an invaluable investment of time and purpose. The process requires deft execution, but we know that dedicated team members across the care continuum can learn this. Training gives them tools and confidence to implement goals-of-care conversations and ACP documentation in partnership with the patient and family.
As parents, it is our responsibility and greatest wish to advocate in the best interest of our children. And it is our right to make these decisions from an informed and empowered position. Although agonizing, ACP acknowledges and advances our deepest love.