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Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the
Jenny Kingsley1,2, Jonna Clark3,4, Mithya Lewis-Newby3,4
1Center for Bioethics, Children's Hospital Los Angeles, Los Angeles, California, USA jkingsley@chla.usc.edu.
Insights
Clinicians face ethical challenges when a child is dying in the paediatric intensive care unit (PICU). A new ethical framework, the relational potential standard, is proposed to balance duties to both the child and family during end-of-life (EOL) care.
Area of Science:
- Medical Ethics
- Paediatric Intensive Care
- End-of-Life Care
Background:
- Families and clinicians grapple with complex decisions during a child's end-of-life (EOL) care in the paediatric intensive care unit (PICU).
- Key challenges include defining the child's best interest, balancing benefits and harms, and addressing moral distress.
- The current best interest standard (BIS) primarily focuses on the clinician's duty to the paediatric patient, often overlooking the family's needs.
Purpose of the Study:
- To critique the limitations of the best interest standard (BIS) in paediatric end-of-life (EOL) decision-making.
- To propose an alternative ethical framework that acknowledges the clinician's duties to both the child and the family.
- To advocate for a more inclusive approach to ethical decision-making in paediatric intensive care.
Main Methods:
- Conceptual analysis of ethical standards in paediatric end-of-life care.
- Argumentative approach detailing the limitations of the best interest standard.
- Proposal of the relational potential standard as an additional ethical framework.
Main Results:
- The best interest standard (BIS) is insufficient as it neglects the clinician's ethical obligations to the patient's family.
- In paediatric end-of-life (EOL) situations within the PICU, clinicians may have a duty to the family that is as significant as their duty to the child.
- The relational potential standard offers a framework to address the needs of both the child and the family.
Conclusions:
- The best interest standard (BIS) requires re-evaluation in the context of paediatric intensive care unit (PICU) end-of-life (EOL) care.
- A dual focus on the child and family is ethically imperative.
- The proposed relational potential standard provides a more comprehensive ethical guide for complex EOL decisions involving children and their families.
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.
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