Establishing Goals of Care in Serious and Complex Pediatric Illness

Carrie M Henderson; Renee D Boss

doi:10.1016/j.pcl.2023.08.008

Establishing Goals of Care in Serious and Complex Pediatric Illness

Pediatr Clin North Am. 2024 Feb;71(1):71-82. doi: 10.1016/j.pcl.2023.08.008. Epub 2023 Sep 19.

Authors

Carrie M Henderson¹, Renee D Boss²

Affiliations

¹ Department of Pediatrics, Center for Bioethics and Medical Humanities, University of Mississippi Medical Center, 2500 North State Street, Jackson, MS 39216, USA.
² Department of Pediatrics, Johns Hopkins School of Medicine, Johns Hopkins Berman Institute of Bioethics, 200 North Wolfe Street, Suite 2019, Baltimore, MD 21287, USA. Electronic address: rboss1@jhmi.edu.

PMID: 37973308
DOI: 10.1016/j.pcl.2023.08.008

Abstract

An increasing number of children are living for months and years with serious/complex illness characterized by long-term prognostic uncertainty, intensive interactions with medical systems, functional limitations, and often home medical technologies that shape the child's and family's quality of life. These families face many medical decision points that require intentional and iterative discussions about goals of care. Threats to cohesive goals of care include prognostic uncertainty, diffusion of medical responsibility, individual family context, and blended goals of care. This article offers strategies for addressing each of these challenges.

Keywords: Chronic critical illness; Goals of care; Palliative care; Pediatric complex care.

Publication types

Review

MeSH terms

Child
Humans
Palliative Care
Patient Care Planning*
Pediatrics*
Physician-Patient Relations
Professional-Family Relations
Prognosis
Quality of Life*