Article Text
Abstract
Background Decisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed.
Methods An online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making.
Results One hundred and thirty participants completed the survey. The majority (94%) agreed that an infant’s life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant’s ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continue or withdraw treatment.
Conclusion Despite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents’ decisions. These findings may be useful when constructing guidelines for clinical practice.
- Allocation of Health Care Resources
- Clinical Ethics
- Ethics
- Quality/Value of Life/Personhood
- End-of-life
This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
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Footnotes
Twitter @Neonatalethics, @juliansavulescu
Contributors CB conceived of the study with input from JS, GK, DW and LC. CB and LC designed the survey. GK supervised the research. CB and LC performed the analysis of the data. CB wrote the first draft of the paper. JS, GK and DW edited the paper and approved the final version.
Funding DW and JS were supported for this work by grants from the Wellcome trust WT106587/Z/14/Z, WT 104848/Z/14/Z, WT203132/Z/16/Z.
Disclaimer The funder had no role in the preparation of this manuscript or the decision to submit for publication.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval Ethics approval was obtained from the Social Sciences & Humanities Inter-Divisional Research Ethics Committee of the University of Oxford
Provenance and peer review Not commissioned; externally peer reviewed.
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