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

Title

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

Creator

Brick C; Kahane G; Wilkinson D; Caviola L; Savulescu J

Publisher

Journal of Medical Ethics

Date

2019

Subject

Allocation of Health Care Resources; Clinical Ethics; End-of-life; Ethics; Quality/Value of Life/Personhood

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

December 2019 List

Collection

Citation

Brick C; Kahane G; Wilkinson D; Caviola L; Savulescu J, “Worth living or worth dying? The views of the general public about allowing disabled children to die,” Pediatric Palliative Care Library, accessed August 5, 2021, https://pedpalascnetlibrary.omeka.net/items/show/16544.

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