Extended essay J Med Ethics: first published as 10.1136/medethics-2019-105639 on 15 October 2019. Downloaded from Worth living or worth dying? The views of the general public about allowing disabled children to die Claudia Brick,1,2 Guy Kahane,2 Dominic Wilkinson ,2,3,4 Lucius Caviola,2,5 Julian Savulescu2,4 ► Additional material is ABSTRact A life not worth living published online only. To view Background Decisions about withdrawal of life Central to these cases of disagreement is the concept please visit the journal online (http:// dx. doi. org/ 10. 1136/ support for infants have given rise to legal battles that in some situations, a child’s degree of disability, medethics- 2019- 105639). between physicians and parents creating intense media severity of illness and/or burden of medical treat- attention. It is unclear how we should evaluate when life ment are so great that it would be best to allow 1Monash University Faculty of is no longer worth living for an infant. Public attitudes them to die. We define the concept as below: Medicine Nursing and Health towards treatment withdrawal and the role of parents Sciences, Clayton, Victoria, A life not worth living (LNWL): A life in which Australia in situations of disagreement have not previously been 2 assessed. future burdens for the individual outweigh benefits. Oxford Uehiro Centre for 9 Practical Ethics, Faculty of Methods An online survey was conducted with a There is negative net future well-being. Philosophy, University of Oxford, sample of the UK public to assess public views about the Oxford, UK It is important to clarify that this concept encom- 3 benefit of life in hypothetical cases similar to real cases John Radcliffe Hospital, Oxford, passes the future prudential value of the life to the UK heard by the UK courts (eg, Charlie Gard, Alfie Evans). 4 individual concerned (ie, it is not about the value of Murdoch Childrens Research We then evaluated these public views in comparison with i Institute, Melbourne, Victoria, existing ethical frameworks for decision-making. an individual to others). Australia Results One hundred and thirty participants completed 5Department of Experimental the survey. The majority (94%) agreed that an infant’s UK legal perspective Psychology, University of Oxford, Though medical guidelines have been published to Oxford, UK life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were aid physicians in these decisions, the most important principles in the UK have evolved through common Correspondence to positively associated with the importance of use of Professor Julian Savulescu, medical resources, the infant’s ability to have emotional (case) law. Because infants have never had decision Faculty of Philosophy, The relationships, and mental abilities. Up to 50% of making capacity or known treatment preferences, Oxford Uehiro Centre for participants in each case believed it was permissible to these decisions must bypass the informed consent Practical Ethics, Oxford OX1 and substituted judgement standards that are first 1PT, UK; either continue or withdraw treatment. turned to in equivalent adult cases.10 Instead, treat- julian. savulescu@ philosophy. Conclusion Despite the controversy, our findings ox. ac. uk ment withdrawal is based on a best interests stan- indicate that in the most severe cases, most people agree 11 that life is not worth living for a profoundly disabled dard, which has been described as encompassing Received 20 June 2019 ‘medical, emotional and all other welfare issues’ Accepted 15 August 2019 infant. Our survey found wide acceptance of at least 7 http://jme.bmj.com/ the permissibility of withdrawal of treatment across a from ‘the assumed point of view of the child’. A range of cases, though also a reluctance to overrule judgement may then be made that, due to a prog- nosis of severe future disability, life would not be parents’ decisions. These findings may be useful when 12 constructing guidelines for clinical practice. worth living. This was further elaborated in the 2006 case of Child MB, when Justice Holman stated that the value of life ‘may be outweighed if the pleasures and the quality of life are sufficiently INTRODUCTION on September 28, 2021 by guest. Protected copyright. Decisions to limit life-sustaining treatment and small and the pain and suffering or other burdens 6 allow a child to die are common in paediatric inten- of living are sufficiently great’. Although the finan- sive care units and widely ethically accepted.1–3 cial cost of treatment may be significant in clinical The vast majority of paediatric treatment limitation practice, resources have been considered irrelevant 2 decisions in intensive care units worldwide are made to these legal decisions. through consensus between physicians, patients and their families. However, as with any life-and-death Ethical perspective issue, ethical issues are prominent and disagreement In answering whether a life is worth living, ethi- is not uncommon—and perhaps on the rise.4 5 The cists have frequently turned to the theories of well- increasing capacity of medicine to keep children being, which ask what makes someone’s life go best: these range from subjective views such as hedonism, © Author(s) (or their alive and the increasingly availability of informa- employer(s)) 2019. Re-use tion via the internet and social media means doctors permitted under CC BY. and families may reach different conclusions about i Published by BMJ. It must be emphasised that this does not necessarily whether or when to discontinue life-sustaining lead to a conclusion that it is right to kill those 4 To cite: Brick C, Kahane G, treatment. This has led to multiple high-profile whose lives are believed to be not worth living, but Wilkinson D, et al. court cases, such as that of Charlie Gard in 2017 to say that to continue to live is no longer of benefit J Med Ethics Epub ahead of (box 1). This case did not occur in isolation: other to them. Though some might argue for euthanasia in this context, here we instead concentrate on the print: [please include Day high profile verdicts include those of Child MB in Month Year]. doi:10.1136/ more widely accepted implication that if a life is not medethics-2019-105639 2006, Charlotte Wyatt in 2004 and Alfie Evans in worth living, life sustaining treatment may not, or 2018.6–8 perhaps should not, be continued. Brick C, et al. J Med Ethics 2019;0:1–9. doi:10.1136/medethics-2019-105639 1 Extended essay J Med Ethics: first published as 10.1136/medethics-2019-105639 on 15 October 2019. Downloaded from interests of family members due to the future burden of care of Box 1 The Charlie Gard case an infant or child with severe impairment.9 16 Charlie Gard was a few months old when he developed progressive Empirical perspective muscle weakness and was diagnosed with a rare genetic disorder: The media attention to the Gard case and substantial social Mitochondrial DNA Depletion Syndrome. Soon after, Charlie media support for the family may suggest that the public are was completely paralysed, deaf, had organ dysfunction and was opposed to legal decisions like those made for Charlie Gard .17 dependent on mechanical ventilation at Great Ormond Street However, there is no published data on public attitudes to such Hospital. Physicians believed that further treatment was futile cases, on general understanding of the concept of a LNWL in and life support should be withdrawn, while Charlie’s parents infants or on what grounds people would support treatment had located a US-based specialist who was prepared to trial an withdrawal, if at all. It is unknown whether decisions on these experimental treatment; the parents thus wanted ventilation to questions are influenced by the presence of pain and suffering continue. Six months of legal proceedings ensued, with hearings at (in line with hedonism) or the lack of capacity for human rela- the High Court, the Court of Appeal, Supreme Court and European tionships (in line with objective list views) or simply by consider- Court of Human Rights all judging in favour of the physicians, ruling ations relating to scarce resources or parental autonomy. that continued treatment would not be in Charlie’s best interests, Existing studies have assessed the views of the public and and that his ‘current quality of life is not one that should be health professionals towards treatment withdrawal in the setting 4 38–40 sustained’. The cases attracted high levels of media and public of adult patients in persistent vegetative state, finding that attention, and garnered opinions from as far afield as the Vatican 66%–92% would support treatment withdrawal.18–21 Studies of and the White House. public attitudes to cases involving children found strong support for parental autonomy in treatment choices, with one study reporting that a large proportion of participants would support where pleasure and pain alone are valued,13 to objective views, parental requests for substandard treatment even at an increased where other goods (such as knowledge, autonomy and relation- risk of death for the child.22 ships) are also considered dimensions of well-being.14 There is However, these studies do not directly shed any light on what a further question of how these well-being judgements should kind of life the public regards as not worth living, and they leave map to treatment decisions. The traditional way of viewing open many questions about public views towards withdrawal of this, as described in the legal judgements, has been labelled a treatment in severely ill infants. The aim of the present study ‘Zero Line View’,9 15 where the point at which treatment must was thus to assess public intuitions towards cases similar to those be withdrawn is the same point at which life has no benefit.