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Establishing Goals of Care in Serious and Complex Pediatric Illness

Carrie M Henderson1, Renee D Boss2

  • 1Department of Pediatrics, Center for Bioethics and Medical Humanities, University of Mississippi Medical Center, 2500 North State Street, Jackson, MS 39216, USA.

Pediatric Clinics of North America
|November 16, 2023
PubMed

Insights

Families of children with serious illnesses navigate complex medical decisions amid uncertainty. This article provides strategies to align goals of care, improving quality of life for these children and their families.

Area of Science:

  • Pediatric medicine
  • Family-centered care
  • Healthcare decision-making

Background:

  • Increasing numbers of children experience long-term serious/complex illnesses.
  • These conditions involve prognostic uncertainty, extensive medical system engagement, and functional limitations.
  • Home medical technologies significantly impact child and family quality of life.

Purpose of the Study:

  • To identify challenges in establishing cohesive goals of care for children with serious illnesses.
  • To offer practical strategies for addressing these challenges.
  • To support families in navigating complex medical decision-making.

Main Methods:

  • The study synthesizes existing literature and clinical experience.
  • It analyzes common threats to aligned goals of care.
  • Strategies are developed based on identified challenges.

Main Results:

  • Key threats include prognostic uncertainty, diffused medical responsibility, and individual family contexts.
  • Blended goals of care can emerge, complicating decision-making.
  • Specific strategies are proposed to mitigate these threats.

Conclusions:

  • Addressing prognostic uncertainty and clarifying medical responsibility are crucial.
  • Tailoring discussions to individual family contexts is essential.
  • Implementing proposed strategies can foster cohesive goals of care and enhance quality of life.

Keywords:
Chronic critical illnessGoals of carePalliative carePediatric complex care

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