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ABSTRACT
In many domains there are tensions between the rights and interests of children, parents and the state. In medical law this has come under scrutiny in England and Wales when considering how parental choice can be accommodated in best interests decision-making in relation to the care of critically ill children. This follows a series of high-profile court cases and, in February 2020, the second reading of the Access to Palliative Care and Treatment of Children Bill in the House of Lords. Through a novel synthesis of source material I examine two key proposals in this Bill in relation to the treatment of children with a life-limiting illness: (i) that courts should assume that any medical treatment proposed by those with parental responsibility is in the child’s best interests unless it poses a disproportionate risk of significant harm; and (ii) that mediation between parents and health service providers should be mandatory. This analysis elucidates how the Bill, as currently drafted, would modify the ordinary best interests approach in relation to children with life-limiting illnesses both substantively and procedurally. Further, by widening the lens – from the Bill’s text to its context – I illustrate challenges inherent in translating the law into meaningful action on the ground, thus shifting the focus from (legal) text to the broader context.
Acknowledgments
I would like to thank Dr Gillian Black for her insightful review of an early draft of this article. Thank you also to the two anonymous reviewers and to the editorial team whose constructive and encouraging feedback has been of great assistance. Any errors of course remain my own.
Disclosure statement
I declare that there are no conflicts of interest.
Legislation, parliamentary material and international instruments
Access to Palliative Care and Treatment of Children Bill (HL Bill 13) [HL].
Access to Palliative Care and Treatment of Children Bill, Second Reading, HL Deb, 7 February 2020, vol 801 cc 2025–2064 [online]. Available from: https://services.parliament.uk/bills/2019-21/accesstopalliativecareandtreatmentofchildren.html [Accessed 25 February 2020].
Children Act Citation1989 (c. 41).
UN Committee on the Rights of the Child, General Comment No. 5 (2003) CRC/GC/2003/5.
UN Committee on the Rights of the Child, General Comment No. 14 (2013) CRC/GC/2013/14.
UN General Assembly, United Nations Convention on the Rights of the Child (UNCRC), Adopted and opened for signature, ratification and accession by General Assembly resolution 44/25 of 20 November Citation1989, entry into force 2 September 1990, in accordance with article 49 [online]. Available from: https://www.ohchr.org/en/professionalinterest/pages/crc.aspx [Accessed 13 February 2020].
Cases in the matter of Charlotte Wyatt
Portsmouth NHS Trust v Wyatt [2004] EWHC 2247 (Fam)
Wyatt v Portsmouth Hospital NHS Trust [2005] EWCA Civ 1181
Cases in the matter of Charlie Gard
Great Ormond Street Hospital v Yates and Gard [2017] EWHC 972 (Fam), High Court, 11 April 2017.
Yates v Great Ormond Street Hospital for Children NHS Foundation Trust [2017] EWCA Civ 410, Court of Appeal, 23 May 2017.
In the matter of Charlie Gard, 8 June 2017, UKSC [online]. The Supreme Court. Available from: https://www.supremecourt.uk/news/permission-to-appeal-hearing-in-the-matter-of-charlie-gard.html [Accessed 17 February 2020].
In the matter of Charlie Gard, 19 June 2017, UKSC [online]. The Supreme Court. Available from: https://www.supremecourt.uk/cases/docs/charlie-gard-190617.pdf [Accessed 17 February 2020].
Gard v United Kingdom (Admissibility) (39,793/17) [2017] 6 WLUK 575 (ECHR, 27 June 2017)
Cases in the matter of Isaiah Haastrup
Haastrup v. the United Kingdom (application no. 9865/18) (ECHR, 6 March 2018)
King’s College Hospital NHS Foundation Trust v (1) Takesha Thomas (2) Lanre Haastrup (3) Isaiah Haastrup [2018] EWHC 127 (Fam) High Court, 29 January 2019.
King’s College Hospital NHS Foundation Trust v (1) Takesha Thomas (2) Lanre Haastrup (3) Isaiah Haastrup No. 2 [2018] EWHC 147 (Fam) High Court, 31 January 2019.
Cases in the matter of Alfie Evans
Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam), High Court of Justice Family Division, 20 February 2018. ([2018] EWHC 308 (Fam)
Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 818 (Fam), High Court, 11 April 2018
Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWCA Civ 805, 16 April 2018
Evans v the United Kingdom (application no. 18,770/18) (ECHR, 23 April 2018)
Re E (A Child) ([2018] EWCA Civ 550 Court of Appeal, 6 March 2018.
In the matter of Alfie Evans, 20 March 2018, UKSC [online]. The Supreme Court. Available from: https://www.supremecourt.uk/news/permission-to-appeal-determination-in-the-matter-of-alfie-evans.html [Accessed 17 February 2020].
In the matter of Alfie Evans, 20 April 2018, UKSC [online]. The Supreme Court. Available from: https://www.supremecourt.uk/news/permission-to-appeal-application-in-the-matter-of-alfie-evans.html [Accessed 17 February 2020].
Evans v United Kingdom (application no. 14,238/18) (ECHR, 28 March 2018)
Cases in the matter of Tafida Raqeeb
Raqeeb v Barts Health NHS Trust and Others, Barts Health NHS Trust v Begum and Others ([2019] Costs L.R. 2143
Raqeeb v Barts NHS Foundation Trust [2019] EWHC 2531 (Admin) and [2019] EWHC 2530 (Fam), High Court of Justice, 3 October 2019
Other case law
An NHS Trust v. MB (A Child represented by CAFCASS as Guardian ad Litem) [2006] EWHC 507 (Fam)
Glass v UK [2004] 1 FLR 1019
R (SG and others) v Secretary of State for Work and Pensions [2015] UKSC 16
Re T (A Minor) (Wardship: Medical Treatment) [1997] 1 All ER 906
Notes
1. Since its adoption in Citation1989 the United Nations Convention on the Rights of the Child (UNCRC) is the most widely ratified international human rights instrument (United Nations, UN Agency for Children). Signed by the UK on 19 April 1990, it was ratified on 16 December 1991 and came into force on 15 January 1992 (Department for Education 2010).
2. At the time of writing, the date for the House of Lords Committee stage (line by line examination of the Bill) is yet to be announced.
3. Charlie Gard’s case was first substantively heard in May 2017. Tafida Raqeeb’s case was determined at a hearing in October 2019.
4. Although, as noted in CRC/GC/2013/14, para. 2, the concept predates this.
5. The Act also covers private law matters, such as child arrangement orders under Section 8.