Where do families turn? Ethical dilemmas in the care of chronically critically Ill children

Johnson Pang, Lora Batson, Kathryn Detwiler, Mattea E. Miller, Dörte Thorndike, Renee D. Boss, Miriam C. Shapiro

Research output: Contribution to journalArticlepeer-review

Abstract

Advancements in early diagnosis and novel treatments for children with complex and chronic needs have improved their chances of survival. But many survive with complex medical needs and ongoing medical management in the setting of prognostic uncertainty. Their medical care relies more and more on preference-sensitive decisions, requiring medical team and family engagement in ethically challenging situations. Many families are unprepared as they face these ethical challenges and struggle to access relevant ethical resources. In this paper, Timmy’s narrative, situated in the context of what is known about ethical challenges in the care of children with chronic critical illness (CCI), serves as a case study of the gap in available ethical resources to guide families in their approach to difficult decision making for children with significant medical complexity and CCI. Our author group, inclusive of parents of children with complex medical needs and medical professionals, identifies domains of ethical challenges facing families of children with CCI and we highlight the development of family/caregiver-oriented ethics resources as an essential expansion of pediatric bioethics.

Original languageEnglish (US)
JournalMonash bioethics review
DOIs
StateAccepted/In press - 2024

Keywords

  • Children with medical complexity
  • Chronic critical illness
  • Decision-making
  • Ethics

ASJC Scopus subject areas

  • Social Sciences (miscellaneous)
  • Philosophy
  • Health Policy

Fingerprint

Dive into the research topics of 'Where do families turn? Ethical dilemmas in the care of chronically critically Ill children'. Together they form a unique fingerprint.

Cite this