Date of this Version
PEC Innovation 1 (2022) 100029
Medical advancesmean a growing array of interventions, therapies, and technologies are available to support care for children with chronic and serious conditions. Some of these approaches are supported by robust data drawn from populations that perfectly reflect an individual patient's physiologic, psychologic, and social situation. But much more often, clinicians and families face decisions in the context of some—or much—uncertainty about whether the intervention will do a child more harm than good. This is particularly true for seriously ill children with a limited lifespan— whether the child is a neonate born with a life-threatening brain anomaly or an adolescent with cancer. Because there is no clear "right" decision in these circumstances, clinical teams review potential benefits and burdens and prioritize the care goals and expectations held by the child's family . Communication about these aspects of care are often referred to as "Goals of Care”. This patient- and family-centered approach identifies valued care, avoids unwanted interventions, and fosters holistic family support . In their 2019 paper, Secunda, et al. offer an operational definition of Goals of Care: “…the overarching aims of medical care for a patient that are informed by patients’ underlying values and priorities, established within the existing clinical context, and used to guide decisions about the use of or limitation on specificmedical interventions” . It is fundamental to shared decision-making and relies on bidirectional communication, particularly since care goals are usually discussed in the setting of clinical conflict, poor prognosis, or treatment limitations . Yet while the "Goals of Care" terminology is often a vernacular phrase for clinical teams, it is, in fact, jargon that can be ambiguous in conversations with families . A clinician's request to discuss "Goals of Care" may signal unfamiliar, confusing, intimidating, or emotionally laden conversational domains to families. Additional ambiguity arises from the fact that Goals of Care conversations often occur in the context of a changing prognosis and a background of baseline uncertainty. This gap in understanding and communication undermines family support. Families processing their own hopes and goals for a child find a sense of solidarity and support from hearing about the experiences of other families facing similar situations [5-7]. Several studies have identified the value of video modality as a source for Goals of Care education, including readying viewers for discussion, enhancing emotional awareness, and processing information in a safe space [8-11]. Given the emotion-laden nature of Goals of Care conversations, videos have been recognized as helpful preparation for families . Thoughtfully produced video content offers viewers access to insight, emotion, and knowledge in an almost experiential way. This may be particularly important to families of children with serious illness who often feel isolated from other families experiencing similar challenges .