Goals of Care Among Parents of Children Receiving Palliative Care

Chris Feudtner, Justin Ingerman Center for Palliative Care, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Leah J. Beight, Doctor of Medicine Program, Georgetown University School of Medicine, Washington, DC.
Jackelyn Y. Boyden, Justin Ingerman Center for Palliative Care, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Douglas L. Hill, Justin Ingerman Center for Palliative Care, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Pamela S. Hinds, Children's National Hospital, Department of Nursing Science, Professional Practice & Quality, Department of Pediatrics, the George Washington University, Washington, DC.
Emily E. Johnston, Department of Pediatrics, Division of Hematology and Oncology, University of Alabama at Birmingham, Birmingham.
Sarah E. Friebert, Department of Pediatrics, Division of Palliative Care, Akron Children's Hospital and Rebecca D. Considine Research Institute, Akron, Ohio.
Jori F. Bogetz, Department of Pediatrics, Division of Bioethics and Palliative Care, University of Washington School of Medicine, Seattle.
Tammy I. Kang, Department of Pediatrics, Section of Palliative Care, Texas Children's Hospital and Baylor College of Medicine, Houston, Texas.
Matt Hall, Children's Hospital Association, Lenexa, Kansas.
Russell T. Nye, Justin Ingerman Center for Palliative Care, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Joanne Wolfe, Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute and Department of Pediatrics Boston Children's Hospital, Boston, Massachusetts.

Document Type

Journal Article

Publication Date

6-12-2023

Journal

JAMA pediatrics

DOI

10.1001/jamapediatrics.2023.1602

Abstract

IMPORTANCE: While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known. OBJECTIVE: To determine parental prioritization of GOCs and patterns of change over time for parents of children receiving palliative care. DESIGN, SETTING, AND PARTICIPANTS: A Pediatric Palliative Care Research Network's Shared Data and Research cohort study with data collected at 0, 2, 6, 12, 18, and 24 months in hospital, outpatient, or home settings from April 10, 2017, to February 15, 2022, at 7 PPC programs based at children's hospitals across the US. Participants included parents of patients, birth to 30 years of age, who received PPC services. EXPOSURES: Analyses were adjusted for demographic characteristics, number of complex chronic conditions, and time enrolled in PPC. MAIN OUTCOMES: Parents' importance scores, as measured using a discrete choice experiment, of 5 preselected GOCs: seeking quality of life (QOL), health, comfort, disease modification, or life extension. Importance scores for the 5 GOCs summed to 100. RESULTS: A total of 680 parents of 603 patients reported on GOCs. Median patient age was 4.4 (IQR, 0.8-13.2) years and 320 patients were male (53.1%). At baseline, parents scored QOL as the most important goal (mean score, 31.5 [SD, 8.4]), followed by health (26.3 [SD, 7.5]), comfort (22.4 [SD, 11.7]), disease modification (10.9 [SD, 9.2]), and life extension (8.9 [SD, 9.9]). Importantly, parents varied substantially in their baseline scores for each goal (IQRs more than 9.4), but across patients in different complex chronic conditions categories, the mean scores varied only slightly (means differ 8.7 or less). For each additional study month since PPC initiation, QOL was scored higher by 0.06 (95% CI, 0.04-0.08) and comfort scored higher by 0.3 (95% CI, 0-0.06), while the importance score for life extension decreased by 0.07 (95% CI, 0.04-0.09) and disease modification by 0.02 (95% CI, 0-0.04); health scores did not significantly differ from PPC initiation. CONCLUSIONS AND RELEVANCE: Parents of children receiving PPC placed the highest value on QOL, but with considerable individual-level variation and substantial change over time. These findings emphasize the importance of reassessing GOCs with parents to guide appropriate clinical intervention.

Department

Pediatrics

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