Supporting Family Decision-making for a Child Who Is Seriously Ill: Creating Synchrony and Connection

Author:

Madrigal Vanessa N.12,Kelly Katherine Patterson34

Affiliation:

1. Division of Critical Care Medicine, Departments of Pediatrics and

2. Associate Professor of Pediatrics, George Washington University School of Medicine and Health Sciences, Washington, District of Columbia

3. Nursing Science, Professional Practice, and Quality, Children’s National Health System, Washington, District of Columbia; and

4. Director of Pediatric Ethics Program, Assistant Professor and

Abstract

The families of children with chronic or serious illness are sometimes faced with difficult decisions never previously imagined. We offer a stepwise approach in building a human connection with these families to support them through the decision-making process. We encourage the clinician to stop talking and to actively listen and find common ground. We suggest that offering open and honest information begins with an invitation. We encourage clinicians to explore concepts with the family, including their fears and hopes. We discuss nurturing an emotional connection between the child and family and describe ways to discover a family’s preference for involvement in the decision-making process. Central to supporting a family is to place infinite value on the life of their child. We argue that attention to these matters will help the clinician remain in sync with the family to ensure meaningful and high-quality decision-making during highly vulnerable times for families.

Publisher

American Academy of Pediatrics (AAP)

Subject

Pediatrics, Perinatology, and Child Health

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