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PARENTAL RIGHTS, BEST INTERESTS AND SIGNIFICANT HARMS: WHO SHOULD HAVE THE FINAL SAY OVER A CHILD'S MEDICAL CARE?

Published online by Cambridge University Press:  22 April 2019

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Abstract

Who should have the ultimate say over a child's medical treatment? A series of high-profile withdrawal of care cases have highlighted the full extent of the courts’ authority to make decisions on behalf of children in the medical context. In both the Charlie Gard and Alfie Evans litigation, the courts have made clear that they have the power to make medical decisions for children at the point that child's welfare is engaged. All courts involved in both cases affirmed the orthodox position that the threshold for judicial intervention in disputes about medical care of children is the welfare of the child, often referred to as the “best interests” approach (referring to both the threshold and the test applied to determine what should be done). While no new point of law has been decided in these cases, they are important in that they confirm just how expansive the inherent jurisdiction of the courts in such cases is, extending as far as to prevent parents from removing their child to another jurisdiction to pursue alternative treatment. In this paper, we argue that the current threshold for intervention is too low. We argue that prima facie decision-making authority about a child's medical care should rest with the child's parents, affording them the ability to choose between the range of medical options available. This authority should yield only where the parents’ decision carries a “serious risk of significant harm” to the child, at which point the court then has the authority to intervene. When it does so, the court should then apply the best interests approach.

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Copyright © Cambridge Law Journal and Contributors 2019 

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Footnotes

*

Assistant Professor, Law Department, London School of Economics. Address for Correspondence: London School of Economics and Political Science, Houghton Street, London, WC2A 2AE, UK. Email: C.Auckland@lse.ac.uk.

**

Associate Professor, Faculty of Law, University of Oxford and Fellow and Tutor in Law, St. Anne's College, Oxford.

References

1 The case involving Charlie Gard is officially Great Ormond Street Hospital v Yates and Gard [2017] EWHC 972 (Fam), [2017] 4 W.L.U.K. 260 and so we refer to it as “Gard” when referring to the decision and the litigation.

2 Alder Hey Children's NHS Foundation Trust v Mr. Thomas Evans, Ms Kate James, Alfie Evans (A Child by his Guardian CAFCASS Legal) [2018] EWHC 308 (Fam), [2018] 2 F.L.R. 1223.

3 In this paper, we focus only on children who are not “Gillick-competent”, that is those children whom the law regards as lack capacity to give consent to treatment. We do so to focus squarely on those cases where the parents or the court are required to decide entirely for the child. We do recognise that there are interesting questions to be asked about the interaction between the harm threshold and the approach the law takes to Gillick-competent children, but they are beyond the scope of this paper.

4 Kings College Hospital NHS Foundation Trust v Ms Thomas, Mr. Haastrup and Isaiah Haastrup [2018] EWHC 127 (Fam), [2018] 2 F.L.R. 1028.

5 “Charlie Gard's parents refused permission to spend his last night at home before his life support machine is switched off on Friday”, The Telegraph, 27 June 2017, available at <https://www.telegraph.co.uk/news/2017/06/29/charlie-gards-parents-refused-permission-spend-last-night-home/> (accessed on 20 March 2019). Chris Gard, Charlie's father, has himself argued that “‘our parental rights have been stripped away” by the court decisions, See M. Robinson et al., “Devastated Parents of Charlie Gard Spend Their Last Night with Their Baby and Blast ‘Heartless’ Doctors for Refusing to Let them Take Him Home to Die before They Turn Off His Life Support Later Today”, The Daily Mail, 30 June 2017, available at <https://www.dailymail.co.uk/news/article-4653894/Outpouring-grief-worldwide-Baby-Charlie-Gard.html> (accessed on 20 March 2019).

6 ITV News, 26 April 2018, “MEP Launching Campaign for ‘Alfie's Law’ to Give Parents More Say”, available at <http://www.itv.com/news/granada/2018-04-26/mep-launching-campaign-for-alfies-law-to-give-parents-more-say/> (accessed on 3 August 2018).

7 The Charlie Gard Foundation, “Charlie's Law”, available at <https://www.thecharliegardfoundation.org/charlies-law/> (accessed on 4 August 2018).

8 “Lady Hale's Explanation of the Supreme Court's Decision”, as delivered in court on 8 June 2017, available at <https://www.supremecourt.uk/news/permission-to-appeal-hearing-in-the-matter-of-charlie-gard.html> (accessed on 20 March 2019).

9 Yates & Anor. v Great Ormond Street Hospital for Children NHS Foundation Trust & Anor. [2017] EWCA Civ 410, [2017] W.L.R.(D.) 391, at [117].

10 See Alder Hey Children's NHS Foundation Trust [2018] EWHC 308 (Fam), [2018] 2 F.L.R. 1223, at [8].

11 We appreciate that the reporting of these cases, leaves much to be desired and the mis-reporting of key facts exacerbated the sense of outrage. However, this does not change the fact that many still regarded the fact itself that the court had power to intervene and to restrain the parents from removing their children as problematic.

12 Art. 9 has relevance due to the religious dimensions in some cases, particularly Evans and Haastrup.

13 In the matter of Charlie Gard (Permission to Appeal Hearing), 8 June 2017, available at <https://www.supremecourt.uk/news/permission-to-appeal-hearing-in-the-matter-of-charlie-gard.html> (accessed on 20 March 2019).

14 In the matter of Charlie Gard (Permission to Appeal Hearing), 8 June 2017; Judgment of the UK Supreme Court in the Case of Charlie Gard, 19 June 2017, at [13].

15 Laurie, G., “Parens Patriae Jurisdiction in the Medico-legal Context: The Vagaries of Judicial Activism” (1999) 3 Edin.L.R. 95CrossRefGoogle Scholar, at 95.

16 In Re Flynn (1848) 2 De. G. & Sm. 457, 474.

17 R. v Gyngall [1893] 2 Q.B. 232, 239, 241–42.

18 In Re McGrath (Infants) [1893] 1 Ch. 143, 148.

19 J v C [1970] A.C. 668, 710–11.

20 Ibid., at p. 697.

21 Re T (A Minor) (Wardship: Medical Treatment) [1997] 1 W.L.R. 242.

22 Gillick v West Norfolk and Wisbech Area Health Authority [1986] A.C. 112, per Lord Scarman at 184.

23 Re A (Children) [2001] 1 Fam 147 (HL), [2001] 2 W.L.R. 480, 178, per Ward L.J.

24 Gillick [1986] A.C. 112, 184, per Lord Scarman.

25 Re A (Children) [2001] 1 Fam 147 (HL), [2001] 2 W.L.R. 480, 178, per Ward L.J.

26 Portsmouth Hospitals NHS Trust v Wyatt [2005] EWCA Civ 1181, [2005] 1.W.L.R. 3995.

27 It should be noted that such a determination is to be made against the background position that a medical professional cannot be legally compelled to offer treatment that he or she is opposed to offering on clinical grounds, and doctors will rarely be required to administer treatment they do not believe is appropriate. Further, doctors mostly concur on what treatment is required, so disputes of the kind that arose in Yates rarely arise: R. (Burke) v General Medical Council & Others [2005] EWCA Civ 1003, [2006] Q.B. 273, at [31]. See also General Medical Council, “Treatment and Care Towards the End of Life: Good Practice in Decision Making” (2010), para. 14(d), available at <https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/treatment-and-care-towards-the-end-of-life> (accessed on 20 March 2019).

28 See Alder Hey Children's NHS Foundation Trust [2018] EWHC 308 (Fam), [2018] 2 F.L.R. 1223, at [47]–[50].

29 “Lady Hale's Explanation of the Supreme Court's Decision”, as delivered in court on 8 June 2017, available at <https://www.supremecourt.uk/news/permission-to-appeal-hearing-in-the-matter-of-charlie-gard.html> (accessed on 20 March 2019).

30 This language avoids the problem of distinguishing parental rights from other rights that differ in not-being self-regarding. We are grateful to Tristan Cummings for suggesting this point to us.

31 Gillick [1986] A.C. 112, 170, per Lord Fraser.

32 Goldstein, J., “Medical Care for the Child at Risk on State Supervision of Parental Autonomy” (1977) 86 Yale L.J. 645CrossRefGoogle Scholar, at 650.

33 Diekema, D., “Parental Refusals of Medical Treatment: The Harm Principle as Threshold for State Intervention” (2004) 25(4) Philosophy of Medical Research and Practice 243Google ScholarPubMed, at 244.

34 Ibid., at p. 244.

35 Heywood, R., “Parents and Medical Professionals: Conflict, Cooperation, and Best Interests” (2012) 20(1) Med.L.Rev. 29CrossRefGoogle ScholarPubMed, at 33.

36 Goldstein, “Medical Care”, p. 649.

37 Salter, E., “Deciding for a Child. a Comprehensive Analysis of the Best Interest Standard” (2012) 33(3) Theoretical Medicine and Bioethics 179CrossRefGoogle Scholar, at 181.

38 Ibid.

39 Diekema, “Parental Refusals”, p. 244.

40 Ibid.

41 See Heywood, “Parents and Medical Professionals”, p. 33.

42 See Goldstein, “Medical Care”, p. 654.

43 Ibid., at p. 655.

44 Harrop, E., “Setting the Scene: Supporting and Informing Shared Decision-making at the Bedside” in Goold, I., Herring, J. and Auckland, C. (eds.), Parental Rights, Best Interests and Significant Harms. Medical Decision-making on Behalf of Children Post-Great Ormond Street Hospital v Gard (2019 forthcoming)Google Scholar. See also Salter, “Deciding for a Child”, p. 191, and the case of Aaron in her discussion.

45 See Diekema, “Parental Refusals”, p. 248.

46 We note that our analysis rests largely on a presumption that parents are engaged, loving and want the best for their children. We appreciate that this is not always the case, but consider it sufficiently usual that parents have their child's best interests at heart to ground this position. In case where parents are not so engaged, some problematic choices may be caught by a harm threshold, while educational provision and child social services may redress some other concerns. We also note the judicial acceptance that some variation in parenting is the price of tolerance (see comments of Hedley, J. in Re L: “Society must be willing to tolerate very diverse standards of parenting, including the eccentric, the barely adequate and the inconsistent”: Re L (Care: Threshold Criteria) (2007) 1 F.L.R. 2050Google Scholar).

47 Kopelman, L., “The Best-interests Standard as Threshold, Ideal, and Standard of Reasonableness” (1997) 22 The Journal of Medicine and Philosophy 271CrossRefGoogle ScholarPubMed, at 276.

48 Ibid.

49 Re Ashya King [2014] EWHC 2964 (Fam), [2014] 2 F.L.R. 855, at [5]–[10].

50 K. McLaughlin and G. Davies, “Health Food Zealot Parents Blamed for Starving Child's Death Walk Free: Baby Died After His Organs Shrank in HALF because Belgian Couple Fed Him a Gluten-free and Quinoa Milk Diet”, The Daily Mail, 14 June 2017, available at <http://www.dailymail.co.uk/news/article-4604100/Parents-blamed-starving-child-s-death-walk-free.html> (accessed on 1 July 2018).

51 Kings College Hospital NHS Foundation Trust [2018] EWHC 127 (Fam), [2018] 2 F.L.R. 1028, at [58].

52 Ibid., at [59].

53 Ibid., at [60].

54 See Salter, “Deciding for a Child”, p. 181.

55 Ibid., at p. 181.

56 Bennett, R., “Allocation of Child Medical Care Decision Making Authority: A Suggested Interest Analysis” (1997) 62(2) Va.L.Rev. 186Google Scholar, at 313.

57 See e.g. F v F [2013] EWHC 2683 (Fam), [2014] 1 F.L.R. 1328. Parents disagree over whether their children should receive certain vaccinations. Once the court has intervened in these cases, they must apply a best-interests test to determine which, of the different courses of action available, ought to be pursued.

58 See e.g. M. Sampathkumar, “Parents Who Prayed for Sick Daughter Instead of Taking Her to Hospital Charged with Murder”, The Independent, 7 June 2017, available at <https://www.independent.co.uk/news/world/americas/oregon-parents-prayer-daughter-dies-arrested-charged-murder-a7777646.html> (accessed on 1 July 2018); “Faith-healing Parents Charged with MURDER after Second Child Died in Their Home from Pneumonia without Getting Medical Help while They Were on Probation over Death of First Son”, Daily Mail, 22 May 2013, available at <http://www.dailymail.co.uk/news/article-2329305/Faith-healing-parents-charged-MURDER-second-child-died-home-pneumonia-getting-medical-help-probation-death-son.html> (accessed on 1 July 2018).

59 J. Wilson, “Letting Them Die: Parents Refuse Medical Help for Children in the Name of Christ”, The Guardian, 13 April 2016, available at <https://www.theguardian.com/us-news/2016/apr/13/followers-of-christ-idaho-religious-sect-child-mortality-refusing-medical-help> (accessed on 1 July 2018).

60 The Governor's Task Force on Children at Risk, 1 July 2015, available at <http://idahochildren.org/wp-content/uploads/2014/12/IDCARTFtoOtter.pdf> (accessed on 20 March 2019).

61 Re A (Children) (Conjoined Twins: Surgical Separation) [2001] 2 W.L.R. 480.

62 See e.g. Re E (A Minor) (Wardship: Medical Treatment) [1993] 1 F.L.R. 386).

63 We are grateful to Jonathan Herring for suggesting we consider the distinction between mistakes of fact and disputes about value.

64 Re T (A Minor) (Wardship: Medical Treatment) [1997] 1 W.L.R 242, 253–54, per Waite L.J.

65 Ibid.

66 J. Savulescu, “Debate: The Fiction of an Interest in Death? Justice for Charlie Gard”, JME Blog, 26 April 2017, available at <https://blogs.bmj.com/medical-ethics/2017/04/26/debate-the-fiction-of-an-interest-in-death-justice-for-charlie-gard/> (accessed on 20 March 2019).

67 We are grateful to an anonymous reviewer for raising this aspect of the Evans litigation to us.

68 There is considerable defence of the best-interests approach to determining what should be done in the case law as outlined earlier in this paper, and a body of critique in the ethics and medical law literature but it is beyond the scope of this paper to explore that literature here. See further Heywood, “Parents and Medical Professionals”; Gillam, L., “The Zone of Parental Discretion: An Ethical Tool for Dealing with Disagreement between Parents and Doctors about Medical Treatment for a Child” (2016) 11(1) Clinical Ethics 1CrossRefGoogle Scholar.

69 Gillam, “The Zone”.

70 Convention for the Protection of Human Rights and Fundamental Freedoms (European Convention on Human Rights, as amended) (ECHR), Art. 8(2).

71 MAK and RK v United Kingdom (Application nos. 45901/05 and 40146/06) (2010) 51 EHRR 14. See also the protection of parental rights in Arts. 3(2) and 5, United Nations Convention on the Rights of Children.

72 “Lady Hale's Explanation of the Supreme Court's Decision”, as delivered in court on 8 June 2017, available at <https://www.supremecourt.uk/news/permission-to-appeal-hearing-in-the-matter-of-charlie-gard.html> (accessed on 20 March 2019).

73 Dudgeon v United Kingdom (Application no. 7526/76) (1983) 5 EHRR 573, at [51].

74 Ibid.

75 R. Taylor, “Parental Decisions and Court Jurisdiction: Best Interests or Significant Harm?” in Goold et al., Parental Rights.

76 See further ibid.

77 Gillick [1986] A.C. 112, 184.

78 See further note 75 above.

79 See note 72 above.

80 Yates & Anor. [2017] EWCA Civ 410, [2017] W.L.R.(D.) 391, at [58].

81 Ibid.

82 See Diekema, “Parental Refusals”, pp. 250–51.

83 Ibid.

84 Ibid.

85 McDougall, R.J. and Notini, L., “Overriding Parents’ Medical Decisions for their Children: A Systematic Review of Normative Literature” (2014) 40 Journal of Medical Ethics 448CrossRefGoogle ScholarPubMed, at 452.

86 “Lady Hale's Explanation of the Supreme Court's Decision”, as delivered in court on 8 June 2017, available at <https://www.supremecourt.uk/news/permission-to-appeal-hearing-in-the-matter-of-charlie-gard.html> (accessed on 20 March 2019).

87 The Christian Institute and others (Appellants) v The Lord Advocate (Respondent) (Scotland) [2016] UKSC 51, 2016 S.L.T 805.

88 Yates & Anor. [2017] EWCA Civ 410, [2017] W.L.R.(D.) 391, at [107].

89 Dworkin, R., Life's Dominion: An Argument About Abortion and Euthanasia, and Individual Freedom (New York 1993)Google Scholar, 217.

90 E.g. Re E (A Minor) (Wardship: Medical Treatment) [1993] 1 F.L.R. 386 and Re L (Medical Treatment: Gillick Competency) [1998] 2 F.L.R. 810. See also the US case of Prince v Massachusetts (1944) 321 US 158: “Parents may be free to become martyrs themselves. But it does not follow that they are free, in identical circumstances, to make martyrs of their children.”

91 The refusal of the parents to authorise the separation of conjoined twins in Re A (Children) (Conjoined Twins: Surgical Separation) [2001] 2 W.L.R. 480, for example, was borne out of their Catholic beliefs, while the courts have on a number of occasions been asked to adjudicate on the issue of Jehovah's Witness parents refusing blood transfusions for their children (see e.g. Re E (A Minor) (Wardship: Medical Treatment) [1993] 1 F.L.R. 386).

92 Diekema, “Parental Refusals”, p. 249. Also see Sher, E.J., “Choosing for Children: Adjudicating Medical Disputes between Parents and the State” (1983) 58 N.Y.U.L.Rev. 157Google Scholar and DeVille, K. and Kopelman, L., “Fetal Protection in Wisconsin's Revised Child Abuse Law: Right Goal, Wrong Remedy” (1999) 27(4) Journal of Law, Medicine and Ethics 332CrossRefGoogle Scholar, at 335.

93 See Diekema, “Parental Refusals”.

94 Dresser, R., “Standards for Family Decisions: Replacing Best Interests with Harm Prevention” (2003) 3 American Journal of Bioethics 54CrossRefGoogle ScholarPubMed, at 54.

95 R. (Burke) [2005] EWCA Civ 1003, [2006] Q.B. 273.

96 Bolam v Friern Hospital Management Committee [1957] 1 W.L.R. 582.

97 Bolitho v City and Hackney Health Authority [1998] A.C. 232.

98 We are grateful to Professor Jonathan Herring for directing us to think about this point.

99 Newmark v Williams, Del. Super. Ct. 588: A.2d 1108 (1991).

100 See Diekema, “Parental Refusals”, p. 256.

101 Ibid., at p. 252.

102 Birchley, G., “The Harm Threshold and Parents’ Obligation to Benefit Their Children” (2016) 42 Journal of Medical Ethics 111CrossRefGoogle ScholarPubMed, at 113.

103 Ibid.

104 See Taylor, “Parental Decisions”.

105 K. Gollop and S. Pope, “Charlie Gard, Alfie Evans and R (A Child): Why A Medical Treatment Significant Harm Test Would Hinder Not Help” (Transparency Project 28/05/2018), available at <http://www.transparencyproject.org.uk/charlie-gard-alfie-evans-and-r-a-child-why-a-medical-treatment-significant-harm-test-would-hinder-not-help/> (accessed on 20 March 2019).

106 Ibid.

107 Re R (A Child) [2018] E.W.F.C. 28.

108 Gollop and Pope, “Charlie Gard”.

109 Ibid.

110 Ibid.

111 Ibid.

112 See further on reasonable disagreement in D. Wilkinson, “In Defense of a Conditional Harm Threshold Test for Paediatric Decision-making” in Goold et al., Parental Rights.

113 G. Birchley, “The Harm Threshold: A View from the Clinic” in Goold et al., Parental Rights.

114 Gollop and Pope, “Charlie Gard”.

115 The authors are grateful to the audience who attended the Baron de Lancey lecture, given by Imogen Goold at the University of Cambridge in March 2019. This paper reflects the valuable input of many of those who made comments and asked questions. Dr. Goold would like to thank the organisers Kathleen Liddell and Jeff Scopek, and the Ver Heyden de Lancey Fund for facilitating the event.

116 Gollop and Pope, “Charlie Gard”.

117 As Lord Scarman emphasised in Gillick [1986] A.C. 112, 184.

118 See note 112 above.

119 Great Ormond Street Hospital [2017] EWHC 972 (Fam), [2017] 4 W.L.U.K. 260, at [22].

120 Yates & Anor. [2017] EWCA Civ 410, [2017] W.L.R.(D.) 391, at [114].

121 We appreciate that this might be rebutted by those in practice (medical and legal), and suggest further research on this question would be welcome.

122 Note Jo Bridgeman's valuable argument that we should understand cases like Gard as ones involving professional conscience: J. Bridgeman, “Beyond Best Interests: A Question of Professional Conscience?” in Goold et al., Parental Rights.

123 See notes 119 and 120 above. See also Alder Hey Children's NHS Foundation Trust [2018] EWHC 308 (Fam), [2018] 2 F.L.R. 1223, at [24].