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Towards developing an ethical framework for decision making in long-term ventilation in children
  1. Samiran Ray1,2,3,
  2. Joe Brierley1,3,4,
  3. Andy Bush5,6,
  4. James Fraser3,7,
  5. Gillian Halley8,
  6. Emily Jane Harrop3,9,
  7. Lidia Casanueva8,10
  1. 1 Paediatric Intensive Care Unit, Great Ormond Street Hospital for Children, London, UK
  2. 2 Respiratory, Critical Care and Anaesthesia, UCL GOS Institute of Child Health, London, UK
  3. 3 Child Health Ethics and Law Special Interest Group, UK
  4. 4 Department of Bioethics, Great Ormond Street Hospital for Children, London, UK
  5. 5 Paediatric Respiratory Medicine, Royal Brompton Hospital and Harefields NHS Trust, London, UK
  6. 6 National Heart and Lung Institute, Imperial College London, London, UK
  7. 7 Paediatric Intensive Care Unit, Bristol Royal Hospital for Children, University Hospitals Bristol NHS Trust, Bristol, UK
  8. 8 Children’s Long-term Ventilation Service, Royal Brompton Hospital and Harefields NHS Trust, London, UK
  9. 9 Department of Paediatrics, Helen and Douglas House, Oxford, UK
  10. 10 Paediatric Palliative Care, Oxford University Hospitals NHS Trust, Oxford, UK
  1. Correspondence to Dr Samiran Ray, Paediatric and Neonatal Intensive Care Unit, Great Ormond Street Hospital NHS Trust, London WC1N 3JH, UK; Samiran.ray{at}gosh.nhs.uk

Abstract

The use of long-term ventilation (LTV) in children is growing in the UK and worldwide. This reflects the improvement in technology to provide LTV, the growing number of indications in which it can be successfully delivered and the acceptability of LTV to families and children. In this article, we discuss the various considerations to be made when deciding to initiate or continue LTV, describe the process that should be followed, as decided by a consensus of experienced physicians, and outline the options available for resolution of conflict around LTV decision making. We recognise the uncertainty and hope provided by novel and evolving therapies for potential disease modification. This raises the question of whether LTV should be offered to allow time for a therapy to be trialled, or whether the therapy is so unlikely to be effective, LTV would simply prolong suffering. We put this consensus view forward as an ethical framework for decision making in children requiring LTV.

  • ethics
  • respiratory
  • health service

https://doi.org/10.1136/archdischild-2018-314997

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    Footnotes

    • 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.

    • Author note This manuscript has been reviewed and endorsed by the BreatheOn UK Charity (Registered Charity number 1143785) following acceptance for publication.