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End-of-life decisions as bedside rationing. An ethical analysis of life support restrictions in an Indian neonatal unit
  1. I Miljeteig1,
  2. K A Johansson1,
  3. S A Sayeed2,
  4. O F Norheim1
  1. 1Global Health; Ethics, Economics and Culture, Department of Public Health and Primary Health Care and Centre for International Health, University of Bergen, Bergen, Norway
  2. 2Division of Medical Ethics, Harvard Medical School, Program in Ethics and Health, Harvard University, Division of Newborn Medicine, Children's Hospital Boston, Boston, Massachusetts, USA
  1. Correspondence to Ingrid Miljeteig, Global Health: Ethics, Economics and Culture, Department of Public Health and Primary Health Care, University of Bergen, Kalfarveien 31, 5020 Bergen, Norway; ingrid.miljeteig{at}isf.uib.no

Abstract

Introduction Hundreds of thousands of premature neonates born in low-income countries are implicitly denied treatment each year. Studies from India show that treatment is rationed even for neonates born at 32 gestational age weeks (GAW), and multiple external factors influence treatment decisions. Is withholding of life-saving treatment for children born between 28 and 32 GAW acceptable from an ethical perspective?

Method A seven-step impartial ethical analysis, including outcome analysis of four accepted priority criteria: severity of disease, treatment effect, cost effectiveness and evidence for neonates born at 28 and 32 GAW.

Results The ethical analysis sketches out two possibilities: (a) It is not ethically permissible to limit treatment to neonates below 32 GAW when assigning high weight to health maximisation and overall health equality. Neonates below 32 GAW score high on severity of disease and efficiency and cost-effectiveness of treatment if one gives full weight to early years of a newborn life. It is in the child's best interest to be treated. (b) It can be considered ethically permissible if high weight is assigned to reducing inequality of welfare and maximising overall welfare and/or not granting full weight to early years of newborns is considered acceptable. From an equity-motivated health and welfare perspective, we would not accept (b), as it relies on accepting the lack of proper welfare policies for the poor and disabled in India.

Conclusion Explicit priority processes in India for financing neonatal care are needed. If premature neonates are perceived as worth less than other patient groups, the reasons should be explored among a broad range of stakeholders.

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Footnotes

  • Funding University of Bergen, Norway and the Young Investigator Grant, Norwegian Research Council (Norheim). The researchers are independent of funders.

  • Competing interests None.

  • Ethics approval The project was accepted by the research ethics committee at the hospital and was approved by the Norwegian Social Science Data Services.

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

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