TY - JOUR
AU - Archard,, Dave
AB - In this book, Dominic Wilkinson and Julian Savulescu seek to draw lessons from the Charlie Gard cases1 and, in particular, to ensure that any disagreement between medical staff and parents about the care of a child does not lead to conflict, especially not one as bitter and damaging as in that case. The book is divided into three parts: ‘Disagreement’, comprising one chapter2; ‘Agreement’, which houses Chapters 2–6;3 and ‘Agreeing to disagree’, with Chapters 7–9 and two appendices.4 In this review, I will not comment on a case whose details are well enough known, given the extensive coverage it received in the media, for two reasons. First, I am a member of the Clinical Ethics Committee at Great Ormond Street Hospital and am, thus, associated with one party to the dispute. All those who write on this case should declare their own commitments. Secondly, whatever the proper interpretation of the Charlie Gard cases—the medical facts and legal rulings—what matters is that we should be able to evaluate the normative framework within which such disagreements are to be understood and also to discern best practice for avoiding their degeneration into open conflict. It is commendable that Wilkinson and Savulescu should try to do this. Unfortunately, the manner in which they seek to do this is unconvincing and, in some regards, a little shoddy. Indeed, the text itself shows many signs of a rush to publish. This is understandable given that the Gard case is still, to some extent, in the public eye, and his parents are actively seeking to change the law.5 However, if it is general normative principles and procedures that are at stake, it would have been better to take more time and care in the preparation of the book. For example, ‘principal’ and not ‘principle’ is an adjective, and on one occasion, one author is referred to as ‘Julian’ and everywhere else as ‘JS’. There are other typos and infelicities too, and the Bolam test is cited (but not included in the index) as providing one of the standards of the duty of care a doctor owes his or her patient (p 82).6 Yet, the use of the Bolam test, in respect of what is owed in order to secure informed consent, was overturned by the Supreme Court in Montgomery in 2015,7 and its use in other medical law contexts has been extensively criticised in academic jurisprudence.8 The central claim in this book—one particularly defended in Part III—is that reasonable disagreement about key values can underpin disagreements between doctors and parents about the care of a child. Inasmuch as that is true, then the parents’ views should prevail if what they propose does not occasion significant harm to the child. Wilkinson and Savulescu proceed by identifying and evaluating the principal norms that—in law or regulation—govern decision-making in cases of critically ill infants,9 before offering a model procedural innovation (a new kind of referral committee) that might help to mitigate conflict (p 59).10 Much of what they say is familiar to those who work in bioethics, and there is also a deal of self-citation within the text. Indeed, some of the book’s major arguments have already been rehearsed in published articles.11 In this review, I will concentrate on Wilkinson and Savulescu’s claims about value disagreement and the rights of parents because there are just too many problematic arguments (or argumentative lacunae) and far too little attention to counter arguments. The idea of reasonable disagreement is, of course, taken from Rawls’ late work.12 For him, the price of a guarantee of the deliberative liberties (of thought, speech, and association) is that individuals may form and endorse various, and perhaps incompatible, conceptions of the good rooted in different fundamental values. Rawls’ concern is whether and how it might be possible, nevertheless, to secure overlapping agreement on the rules of social cooperation and political governance. Wilkinson and Savulescu are, however, concerned with a different question—which view of what is best for a child should prevail. Thus, whereas Rawls thought that a political liberal should not favour any of those reasonable views that conflict, his concern being with how citizens who did disagree can nevertheless find agreement on the terms of their shared social existence, Wilkinson and Savulescu use the notion of reasonable disagreement to support one of the conflicting views, those of the parent. This, then, is simply to misuse Rawls. Furthermore, as is often noted, Rawls’ claims derive from ideal theory that makes perhaps unrealistic assumptions about what real life individuals are motivated to do and to believe.13 Wilkinson and Savulescu do offer some tests for what counts as a reasonable view, such as sensitivity to those reasons and facts that support it, and these are sensible enough. But the main problems are here. Some disagreements between doctors and patients may not be about values (say, about the quality of a life) but factual matters (will this treatment work, for instance). And if the disagreement is about the latter, it is unclear why medical expertise should not be decisive. Furthermore, one party to the disagreement might not be prepared to count the other’s view as reasonable, and there may, indeed, be reasonable disagreement as to whether a disagreement is reasonable. And, are some evaluative claims simply to be ruled out as unreasonable on account of their content? Wilkinson and Savulescu appear to think so—and often their own known philosophical commitments show. For instance, they say that the distinction between acts and omissions is ‘philosophically … very difficult to defend’ (p 64), and they cite a well-known piece by Rachels.14 However, not all philosophers agree with Rachels, and some do attempt the ‘difficult’ defence of the distinction.15 Indeed, it makes sense to think that professionals making decisions can reasonably disagree about the import of the distinction.16 Wilkinson and Savulescu also claim that a belief that it would be wrong to intervene against what is God’s will is ‘arguably irrational’ (pp 88–89). Again, while some critics of religion might so view such a belief, others of faith would not. Indeed, Wilkinson and Savulescu themselves acknowledge that they disagree about the place of religious reasons in treatment decisions (p 114). Their commitments and critical claims about some beliefs also sit oddly with their assertion—supporting the idea that there need be no obvious answer to a question of value—that we live in ‘increasingly diverse and pluralistic societies’ whose members come from ‘a range of social, cultural and religious backgrounds’ (p 121). Similarly, there is a disjuncture with the later claim that ‘value-based disagreements are part of living in diverse progressive communities’ (p 146), and with the admission that in some (‘progressive’?) societies but not others, there is a belief in the inadmissibility of withdrawing life-sustaining treatment (p 113). Wilkinson and Savulescu do explicitly say that ‘a reasonable view about treatment cannot be justified on the basis of reasons that are judged to be unacceptable by wider society’ (p 112). But who exactly is it that makes this judgement of unacceptability? And is there societal consensus on what is an unacceptable reason? This seems unlikely. Or is it a question of a majority vote, or is this a matter for the courts to determine? Judges do see themselves in contested cases as trying to determine objectively what, for instance, is in the best interests of a child. Indeed, Francis J was explicit in his consideration of the Charlie Gard case that ‘overriding control is by law vested in the court exercising its independent and objective judgment in the child’s best interests’.17 Nevertheless, Wilkinson and Savulescu think that deciding against the views of parents would be unfair inasmuch as this would be ‘courts or doctors’ (emphasis added) imposing ‘their own values on a family’ (p 91). The claim that courts impose their values on litigants, if it is not a slip, is startling and requires supporting evidence. Unfortunately, the argument is sloppy. If reasonable value pluralism is to be the keystone of an approach to medical decision-making, it is not good enough to ignore these questions or to fudge their answers. There is still the question of why, if there is reasonable disagreement, the views of the parents should prevail. Wilkinson and Savulescu state that: One reason to give parents greater say in medical decisions would be if a society gave greater weight to parents’ autonomy, or a [sic] had a more pluralistic view about what would be best for a child. (p 59) The claim about pluralism establishes a context of disagreement, but it does not show which of the disputing views should have the greatest weight. The first half of the sentence simply offers as a reason for something that a society endorses it. This is not a reason of general application since the sentence follows a survey of the different weights given to parents’ views in various societies. Wilkinson and Savulescu argue that in the UK too much weight is given to the views of medical professionals (p 59).18 If this is true, then maybe a reason to give such professionals a greater say is because our society gives greater weight to their autonomy. Wilkinson and Savulescu also assert that ‘we should defer to the wishes of parents [if we are unsure of some evaluative question] not because they must be right but just because there is reasonable disagreement’ (p 164). ‘Just’? When Smith and Jones reasonably disagree on some matter, we should defer to Smith ‘just’ because they disagree? There is a clearer sense of an argument elsewhere, with one most clearly expressed on pp 90–91. On the immediately preceding pages, Wilkinson and Savulescu state that parents have a special if not privileged knowledge of their child. While they probably do have such knowledge, it need not be of a sort that disposes to a better medical understanding of their child’s condition. Nor need it be one that shows their value claims to be more likely to be true. That leaves us with an assertion of parental autonomy and the claim that any decision in respect of the child has a profound effect on the parents. Parental autonomy is a general right of parents to decide, within reasonable bounds, how to raise and care for their children. The bounds are set by the harm principle; thus, parents are free to make caretaking decisions about their offspring so long as they do not harm or risk causing harm to the latter. Wilkinson and Savulescu are correct that as a general rule within nearly all liberal societies this is how the rights of parents are generally understood. Yet this is irrelevant. The harm principle is a threshold standard for triggering intervention into the lives of families.19 If a child is receiving medical care, the standard for determining what that care should be is what is in the best interests of the child. The courts have consistently ruled that this is the standard and did so, as Wilkinson and Savulescu note, in the Charlie Gard case.20 Of course, it is true that different people will be affected differently by what it is determined should be done for the child. That might be the parents, but doctors and nurses might be seriously and adversely affected by having, against their reasonable judgement of what was best for the child, to continue treatment. However, once again, that is beside the point. What matters for the courts, and what should matter, is what is best for the child, not what is best for others who stand in particular relations to the child. The best, most interesting and most revealing part of the book are the Appendices in which Wilkinson and Savulescu summarise their own view of what should have happened in the Charlie Gard case. Wilkinson shows himself here to be a sensitive, caring, and thoughtful medical ethicist. Savulescu is happy to repeat what he said in answer to a question from a BBC interviewer, ‘So you think all these doctors and all these Courts are wrong?’ His answer, ‘Yes.’ There is the quiet pride in being prepared to stand alone and to defend what no one else will, and then there is hubris compounded by an ill-judged rush to reach what ultimately are poorly defended conclusions. The Charlie Gard case was deeply tragic, and no party was, or should have been, happy to see its unfolding, conduct, and conclusion. We must try to learn lessons from it, and those who conscientiously practise bioethics should play their part in this learning. Sadly, this book does little to honour that obligation. Footnotes 1 Great Ormond Street Hospital v Yates, Gard and Gard [2017] EWHC 972 (Fam); Yates and Gard v Great Ormond Street Hospital for Children NHS Foundation Trust and Gard [2017] EWCA Civ 410; Re Charlie Gard, Supreme Court, 8 June 2017; Judgment of the UK Supreme Court in the Case of Charlie Gard, 19 June 2017; Gard and others v the United Kingdom (application no. 39793/17); Great Ormond Street Hospital v Yates, Gard and Gard [2017] EWHC 1909 (Fam). 2 See ‘The Charlie Gard case’, ch 1. 3 ‘Futility’, ‘Best interests’, ‘Resources’, ‘Research’, and ‘Parents’, respectively. 4 ‘Dissensus and value pluralism’, ‘Embracing disagreement’, ‘Learning from Charlie Gard’, ‘Savulescu’s view’, and ‘Wilkinson’s view’, respectively. 5 See Charlie Gard Foundation, ‘Charlie’s Law’ <https://www.thecharliegardfoundation.org/charlies-law/> accessed 5 December 2018. 6 Bolam v Friern Hospital Management Committee [1957] 1 WLR 583. 7 Montgomery v Lanarkshire Health Board [2015] UKSC 11. 8 M Brazier and J Miola, ‘Bye-Bye Bolam: A Medical Revolution?’ (2000) 8 Med L Rev 85. 9 See ‘Futility’, ch 2; ‘Best interests’, ch 3. 10 See ‘Embracing disagreement’, ch 8. 11 For example, D Wilkinson and J Savulescu, ‘Hard Lessons: Learning from the Charlie Gard Case’ (2018) 44 JME 438; ‘Alfie Evans and Charlie Gard—Should the Law Change?’ (2018) BMJ 361 <https://www.bmj.com/content/361/bmj.k1891> accessed 11 December 2018; ‘After Charlie Gard—Ethically Ensuring Access to Innovative Treatment’ (2017) 390 Lancet 540. 12 J Rawls, Political Liberalism (Columbia University Press 1993). 13 C Farrelly, ‘Justice in Ideal Theory: A Refutation’ (2007) 55 Pol Stud 844; CW Mills, ‘“Ideal Theory” as Ideology’ (2005) 20 Hypatia 165. 14 J Rachels, ‘Active and Passive Euthanasia’ (1975) 292 NEJM 78. 15 A classic discussion is P Foot, ‘The Problem of Abortion and the Doctrine of Double Effect’ (1967) 5 Oxford Rev 5. 16 T Hope, ‘Acts and Omissions Revisited’ (2000) 26 JME 227. 17 Great Ormond Street Hospital (n 1) [11]. 18 See also ch 7. 19 See, eg Children Act 1989, s 31. 20 Yates and Gard (n 1); Re Charlie Gard (n 1). © The Author(s) 2018/2019. Published by Oxford University Press; All rights reserved. For permissions, please email: journals.permissions@oup.com This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model)
TI - Dominic Wilkinson and Julian Savulescu, Ethics, Conflict and Medical Treatment for Children: From Disagreement to Dissensus
JF - Medical Law Review
DO - 10.1093/medlaw/fwz003
DA - 2019-08-01
UR - https://www.deepdyve.com/lp/oxford-university-press/dominic-wilkinson-and-julian-savulescu-ethics-conflict-and-medical-3zwLzChv6w
SP - 530
VL - 27
IS - 3
DP - DeepDyve
ER -