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The Need for Advance Care Planning for Seriously Ill Infants

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Advance care planning (ACP) is a process that supports patients “in understanding and sharing their personal values, life goals, and preferences regarding future medical care” so that medical care will align with the patient’s and family’s “values, goals, and preferences during serious and chronic illness.”

It may seem incongruous to think about ACP when it comes to a neonate. After all, the baby was just born! However, as we all know, some infants are born with serious illness.

ACP has only recently begun to be used with pediatric patients, primarily patients with cancer or HIV infection.

This week, Pediatrics is early releasing an article, entitled “The Case for Advance Care Planning in the Neonatal Intensive Care Unit,” by Dr. Matthew Lin from Children’s National Medical Center and colleagues at Harvard University (10.1542/peds.2022-057824).

Using a case-based approach, the authors describe how ACP can provide structure to some of the difficult conversations with families that must take place when an infant is seriously ill. They discuss the need to assess the family’s understanding of the infant’s illness, understand the family’s values and perspectives on quality of life, and to jointly develop care goals.

Even if you do not work in a neonatal intensive care unit, you will want to read this article. All of us care for children with chronic or serious illness, and the principles of ACP outlined in this article will be helpful as a framework for those difficult conversations with families.

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