Worth living or worth dying? The views of the general public about allowing disabled children to die

Why genomics researchers are sometimes morally required to hunt for secondary findings

Brick, C., Kahane, G., Wilkinson, D., Caviola, L. and Savulescu, J., (2020), 'Worth living or worth dying? The views of the general public about allowing disabled children to die', Journal of Medical Ethics, Vol: 46(1) [PMC6984061]

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.


This paper has been made Open Access under the following Wellcome Trust grants:

Grants: WT106587 | WT203132 | WT104848

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