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Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the paediatric intensive care unit
  1. Jenny Kingsley1,2,
  2. Jonna Clark3,4,
  3. Mithya Lewis-Newby3,4,
  4. Denise Marie Dudzinski5,6,
  5. Douglas Diekema4,6
  1. 1Center for Bioethics, Children's Hospital Los Angeles, Los Angeles, California, USA
  2. 2Pediatrics, University of Southern California Keck School of Medicine, Los Angeles, California, USA
  3. 3Pediatric Critical Care Medicine, Seattle Children's Hospital, Seattle, Washington, USA
  4. 4Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, USA
  5. 5Bioethics & Humanities, University of Washington, Seattle, Washington, USA
  6. 6Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA
  1. Correspondence to Dr Jenny Kingsley, Center for Bioethics, Children's Hospital Los Angeles, Los Angeles, CA 90027, USA; jkingsley{at}chla.usc.edu

Abstract

Families and clinicians approaching a child’s death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child’s best interest, finding an optimal balance of benefit over harm, and sometimes addressing potential futility and moral distress. The best interest standard (BIS) is often marshalled by clinicians to help navigate these dilemmas and focuses on a clinician’s primary ethical duty to the paediatric patient. This approach does not consider a clinician’s potential duty to the patient’s family. This paper argues that when a child is dying in the PICU, the physician has a duty to serve both the patient and the family, and that in some circumstances, the duty to serve the family becomes as important as that owed to the child. We detail the limitations of the BIS in paediatric EOL care and propose the relational potential standard as an additional ethical framework to guide our decisions.

  • Pediatrics
  • Terminal Care
  • Clinical Ethics
  • Palliative Care

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Footnotes

  • Contributors JK conceptualised and drafted the manuscript and took the lead in shaping its content and structure. JK is also the guarantor for the manuscript. JC, ML-N, DMD and DD contributed to the development of subsequent versions of the manuscript through critical revision and analysis, providing valuable insights and feedback. All authors reviewed and approved the final version of the manuscript, ensuring its accuracy and integrity.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.