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, 46 (1), 7-15

Worth Living or Worth Dying? The Views of the General Public About Allowing Disabled Children to Die

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Worth Living or Worth Dying? The Views of the General Public About Allowing Disabled Children to Die

Claudia Brick et al. J Med Ethics.

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.

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

Conflict of interest statement

Competing interests: None declared.

Figures

Figure 1
Figure 1
The Threshold Framework for treatment withdrawal. Reproduced with permission from Death or Disability? The ‘Carmentis Machine’ and decision-making for critically ill children.
Figure 2
Figure 2
Example case from the survey: possible awareness.
Figure 3
Figure 3
Distribution of values in response to the statement ‘Life has no benefit for this infant’.
Figure 4
Figure 4
Aggregate data comparing responses to the statement ‘Life has no benefit’ with beliefs about morally correct treatment decisions.
Figure 5
Figure 5
Comparison of the proportion of participants who would personally choose treatment withdrawal if it was their own child, with participants who agreed there was a general moral obligation to withdraw treatment.
Figure 6
Figure 6
The Threshold Framework with the evaluations of the six cases by survey respondents displayed in order of agreement with the statement ‘Life is of no benefit to this infant’ (mean responses to Likert scale 1–7, where one is agree, four is neither agree nor disagree, and seven is disagree).

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