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

Abstract

BackgroundDecisions 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.MethodsAn 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.ResultsOne 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.ConclusionDespite 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.

How to get your article published as a JME feature article and why they matter for the field

“…The article, ‘ Worth Living or Worth Dying? The Views of the General Public About Allowing Disabled Children to Die ’,9 involves the first ever large survey study of the views of the general (UK) public about the benefit of life in hypothetical cases similar to real cases such as Charlie Gard and Alfie Evans. The authors then evaluate these views in comparison with existing ethical frameworks for decision-making.…”

Is ‘best interests’ the right standard in cases like that of Charlie Gard?

“…Savulescu and colleagues provide interesting insights into the views of the UK public on decision making for children like Charlie Gard 1. In that case and others like it, both the clinicians and the courts made decisions based on their view of the child’s best interests.…”

Relationships help make life worth living

“…Decisions regarding life-sustaining medical treatments for young children with profound disabilities can be extremely challenging for families and clinicians. In this study, Brick and colleagues1 surveyed adult residents of the UK about their attitudes regarding withdrawal of treatment using a series of vignettes of infants with varying levels of intellectual and physical disability, based on real and hypothetical cases 1. This is an interesting study on an important topic.…”