Compassionate Decision-Making Strategies for Families of Critically Ill Children

When a child faces critical illness, families are often confronted with one of the most emotionally challenging questions: how should medical teams proceed when a child's heart stops or they are unable to breathe on their own? Traditionally, families are asked to directly express their wishes regarding life-sustaining treatments. However, recent research from the University of Connecticut highlights a more compassionate approach known as informed non-dissent.

This innovative method shifts the decision-making burden from families to healthcare providers, who recommend not attempting resuscitation or aggressive interventions when they deem such measures unlikely to alter the child's disease trajectory. Families are included in the conversation and can voice disagreement if they wish, but they are spared the difficult task of explicitly saying 'no.' This approach aims to reduce emotional distress, guilt, and conflict during an already traumatic time.

Researcher Laura Moynihan, LICSW, Ph.D. student at UConn, and her team conducted a study involving six cases of children with severe illnesses. In most cases, families accepted the healthcare team's recommendations under the informed non-dissent framework. The findings suggest that this method is both ethical and acceptable, fostering honesty, compassion, and alignment with families' values.

Further, Moynihan's work emphasizes giving a voice to young patients as well. She contributed to the development of a revised version of 'Voicing My CHOiCES,' a tool designed to help adolescents and young adults articulate their preferences regarding medical care and quality of life. The updated guide incorporates personal storytelling elements, making it more relevant and supportive, with the majority of young people feeling it helps them reflect on what matters most.

Moynihan's clinical experience in pediatric oncology informs her research, focusing on decision-making processes among young patients with uncertain prognoses. Her goal is to develop better interventions that respect the dignity and unique perspectives of patients and their families, especially during difficult choices about treatment and care.

This innovative approach to pediatric end-of-life decision-making aims to foster greater compassion, reduce emotional burdens, and improve the overall quality of care for critically ill children and their families.