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Disability in the neonatal intensive care unit: are current frameworks applicable?

Peter D Murray1

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Journal of Medical Ethics
|July 10, 2025
PubMed
Summary

Shared decision-making in neonatal intensive care units (NICUs) needs a new framework. Current disability models inadequately address neonates, necessitating a revised approach for withdrawal of life-sustaining measures decisions.

Keywords:
Disabled PersonsFuture child disabilityNeonatologyPalliative Care

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Area of Science:

  • Neonatal intensive care
  • Bioethics
  • Disability studies

Background:

  • Shared decision-making (SDM) guides neonatal intensive care unit (NICU) patient care.
  • Withdrawal of life-sustaining measures (WLSM) decisions in NICUs use SDM, considering physiology and disability.
  • Existing medical and social models of disability do not fully capture the complexities of neonates.

Purpose of the Study:

  • To highlight the inadequacy of current disability models in NICU settings.
  • To propose a new framework for decision-making regarding WLSM for neonates.
  • To better support parents in making critical care choices.

Main Methods:

  • Analysis of existing medical and social models of disability.
  • Evaluation of their applicability to neonatal patients.
  • Identification of limitations in the context of NICU care and WLSM decisions.

Main Results:

  • The medical model views disability as an internal defect, unsuitable for neonates.
  • The social model overlooks the biological realities of neonates.
  • Neither model accurately reflects a neonate's potential for disability or current physiological state.

Conclusions:

  • A novel framework is essential for NICU WLSM decisions.
  • This framework must integrate current medical needs with disability prognostication.
  • Such an approach will better serve the best interests of neonates and their families.