Medical Decision-Making in Foster Care: Considerations for the Care of Children With Medical Complexity

Rebecca R. Seltzer, Jessica C. Raisanen, Trisha da Silva, Pamela K. Donohue, Erin P. Williams, Jennifer Shepard, Renee D. Boss

Research output: Contribution to journalArticlepeer-review

Abstract

Objective: To explore how medical decision-making for children with medical complexity (CMC) occurs in the context of foster care (FC). Methods: Together with a medical FC agency, we identified 15 CMC in medical FC and recruited eligible care team members (biological and foster parents, medical FC nurses, caseworkers in medical FC/child welfare, and pediatricians) for each child. Semistructured interviews were conducted, and conventional content analysis was applied to transcripts. Results: Fifty-eight interviews were completed with 2–5 care team members/child. Serious decision-making related to surgeries and medical technology was common. Themes regarding medical decision-making for CMC in FC emerged: 1) Protocol: decision-making authority is dictated by court order and seriousness of decision, 2) Process: decision-making is dispersed among many team members, 3) Representing the child's interests: the majority of respondents stated that the foster parent represents the child's best interests, while the child welfare agency should have legal decision-making authority, and 4) Perceived barriers: serious medical decision-making authority is often given to individuals who spend little time with the child. Conclusions: Medical decisions for CMC can have uncertain risk/benefit ratios. For CMC in FC, many individuals have roles in these nuanced decisions; those with ultimate decision-making authority may have minimal interaction with the child. Pediatricians can assist by clarifying who has legal decision-making authority, facilitating team communication to promote truly informed consent, and serving as a resource to decision-makers. Further research should explore how to adapt the traditional model of shared decision-making to meet the needs of this population.

Original languageEnglish (US)
Pages (from-to)333-340
Number of pages8
JournalAcademic pediatrics
Volume20
Issue number3
DOIs
StatePublished - Apr 2020

Keywords

  • children with medical complexity
  • foster care
  • medical decision-making
  • shared decision-making

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

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