LEGAL ISSUES IN HEALTH CARE LECTURES 2022

CONSENT TO TREATMENT II: CAPACITY- CHILDREN

Background Reading
G. Laurie, S.Harmon and E. Dove Mason and McCall-Smith’s Law and Medical Ethics
11th edition (2019), pages 339-345.
J. Bridgeman, Medical Treatment of Children and the Law: Beyond Parental
Responsibilities (Routledge, 2020).
G. Douglas, "The Retreat from Gillick'' (1992) 55 M.L.R. 569.
E. Cave and J. Wallbank, “Minors’ Capacity to Refuse Treatment: A Reply to Gilmore and
Herring” (2012) 20 Medical Law Review 425
I Goold, J. Herring and C. Auckland (eds), Parental Rights, Best Interests and Significant
Harms: Medical Decision-Making on Behalf of Children Post-Great Ormond Street
Hospital v Gard (Hart, 2019).

I. LEGALITY OF OBTAINING CONSENT TO TREATMENT FROM

CHILDREN 16 ANDOVER

Section 8 of the Family Law Reform Act 1969

s. 8(1) The consent of a minor who has attained the age of sixteen ears to any surgical,
medical or dental treatment which, in the absence of consent, would constitute a trespass to
his person, shall be as effective as it would be if he were of full age; and where a minor has
by virtue of this section given an effective consent to any treatment it shall not be necessary
to obtain any consent for it from his parent or guardian.

(2) In this section “surgical medical or dental treatment” includes any procedure undertaken
for the purposes of diagnosis and this section applies to any procedure (including in
particular, the administration of an anaesthetic) which is ancillary to any treatment, as it
applies to that treatment.

(3) Nothing in this section shall be construed as making ineffective any consent which
would have been effective if this section had not been enacted.

NOTES:
1. In English law any person under the age of 18 is a “minor”

2. Section 8 provides that it is lawful to obtain consent from a person who is 16 rather than their
parents. But critically this does not necessarily mean that a child over 16 will be able to make
the decision as they need to have the mental capacity to make that decision

3. In deciding if a person over 16 has the requisite mental capacity to make a decision the test
for capacity is that set out in the Mental Capacity Act 2005.

1
 4. In relation to persons between 16-18 whether the MCA or the Family Law jurisdiction is used
to determine a case will vary and can depend on the circumstances of a particular case.

The Mental Capacity Act Code of Practice provides that

“Sometimes there will be disagreements about the care, treatment or welfare of a young
person aged 16 or 17 who lacks capacity to make relevant decisions. Depending on the
circumstances, the case may be heard in the family courts or the Court of Protection.
The Court of Protection may transfer a case to the family courts, and vice versa.”
(Chapter 12, MCA Code of Practice (2007) introduction, page 217.)

So cases in relation to children between 16-18 can go EITHER to the Family Courts or to the
Court of Protection. But in practice the test which is applied in either court will be whether the
treatment is in the child’s best interests.

2
 II. WHEN CAN CHILDREN WHO ARE UNDER 16 YEARS OF AGE
MAKE DECISIONS REGARDING THEIR OWN MEDICAL
TREATMENT?

Where children are under 16 they may be able to give consent themselves if they have what is
known as “Gillick” competence.

Gillick v West Norfolk & Wisbech AHA [1986] 1 AC 112, HL.

“But there may well be cases, and I think there will be some cases, where the girl refuses
either to tell the parents herself or to permit the doctor to do so and in such cases the doctor
will, in my opinion, be justified in proceeding without the parents' consent or even
knowledge provided he is satisfied on the following matters: (1) that the girl (although under
16 years of age) will understand his advice (2) that he cannot persuade her to inform her
parents or to allow him to inform the parents that she is seeking contraceptive advice
(3) that she is very likely to begin or to continue having sexual intercourse with or without
contraceptive treatment (4) that unless she receives contraceptive advice or treatment her
physical or mental health or both are likely to suffer (5) that her best interests require him
to give her contraceptive advice, treatment or both without the parental consent….

“[P]arental rights to control a child do not exist for the benefit of the parent. They exist
for the benefit of the child and they are justified only in so far as they enable the parent
to perform his duties towards the child… the degree of parental control exercised over a
unrealistic for the courts not to recognise these facts…It is a question of fact for the judge
(or jury to determine whether a particular child can give effective consent to contraceptive
treatment” (per Lord Fraser).

“I would hold that as a matter of law the parental right to determine whether or not
their minor child below the age of 16 will have medical treatment terminates if and
when the child achieves a sufficient understanding and intelligence to enable him or her
to understand fully what is proposed. It will be a question of fact whether a child seeking
advice has sufficient understanding of what is involved to give a consent validin law.”
(per Lord Scarman)

NOTE:

1. Capacity here- as with the Mental Capacity Act 2005 is a decision relative test.

2. The test under Gillick is however distinct in form from that under the Mental Capacity Act.

3. While Gillick initially applied to contraceptive advice and treatment it has subsequently been
applied generally in relation to medical treatment.

3
 In R (on the application of Axon) v. SoS For Health [2006] 2 WLR 1130

“there is no reason why Lord Fraser’s Guidelines and Lord Scarman’s criteria should
not be adapted and applied to advice and treatment for abortion even though abortions
raise, as I have explained, more serious and complex issues than contraception.” (per
Silber J)

See also R. Taylor, “Reversing the Retreat from Gillick” (2007) 19 Child and Family Law
Quarterly 81.

Gillick Competence Revisited

Bell & Anor v The Tavistock and Portman NHS Foundation Trust [2020] EWHC 3274 (Admin).

Proceedings brought by a woman who had begun taking puberty blockers when 16 years old and
then had a double mastectomy at the age of 20. She subsequently regretted the treatment and
undertook “de-transitioning” in her early 20s. Joined in the action was a mother of a 16-year-old
girl with autism who is waiting for gender identity dysphoria treatment. The action was against
the Tavistock and Portman NHS trust. This NHS body operates the only gender identity
developmentservice (GIDS) for children in the UK. It was alleged that a minor under 18 could not
give consent, information provided to those seeking treatment was misleading and lack of
information/procedural safeguards constituted a violation of Article 8 of ECHR.

Judgment of the Court: Dame Victoria Sharp P., Lord Justice Lewis, Lieven J

145. Gillick makes clear that any decision is treatment and person specific. However, for the reasons
that we have set out above, we think that it is appropriate in this case to give clear guidance as
to the application of the Gillick tests to the treatment and cohort of children in question. The
conclusion we have reached is that it is highly unlikely that a child aged 13 or under would ever
be Gillick competent to give consent to being treated with PBs. In respect of children aged14
and 15, we are also very doubtful that a child of this age could understand the long-term risks
and consequences of treatment in such a way as to have sufficient understanding to give
consent. However, plainly the increased maturity of the child means that there is more
possibility of achieving competence at the older age.

146. In respect of a young person aged 16 or over, the legal position is different. There is a
presumption of capacity under section 8 of the Family Law Reform Act 1969. As is explained
in Re W, that does not mean that a court cannot protect the child under its inherent jurisdiction
if it considers the treatment not to be in the child's best interests. However, so long as the young
person has mental capacity and the clinicians consider the treatment is in his/her best interests,
then absent a possible dispute with the parents, the court generally has no role. We do not
consider that the court can somehow adopt an intrusive jurisdiction in relation to one form of
clinical intervention for which no clear legal basis has been established.

147. We do however recognise that in the light of the evidence that has emerged, and the terms of
this judgment, clinicians may well consider that it is not appropriate to move to treatment, such
as PBs or CSH, without the involvement of the court. We consider that it would be appropriate
for clinicians to involve the court in any case where there may be any doubt as to whether the
long-term best interests of a 16 or 17 year old would be served by the clinical interventions at
issue in this case.

4
148 We express that view for these reasons. First, the clinical interventions involve significant,
long-term and, in part, potentially irreversible long-term physical, and psychological
consequences for young persons. The treatment involved is truly life changing, going as it does
to the very heart of an individual's identity. Secondly, at present, it is right to call the treatment
experimental or innovative in the sense that there are currently limited studies/evidence of the
efficacy or long-term effects of the treatment.

149. The position of the defendant and the Trusts is that they consider it would be an intrusion intothe
child or young person's autonomy if a decision about treatment with PBs were to be made by
the court not by the patient. They are concerned about the use of NHS and court resources if
these decisions have to be made by the court. We do not consider that this is the correct
approach. In principle, a young person's autonomy should be protected and supported; however,
it is the role of the court to protect children, and particularly a vulnerable child's best interests.
The decisions in respect of PBs have lifelong and life-changing consequences for the children.
Apart perhaps from life-saving treatment, there will be no more profound medical decisions for
children than whether to start on this treatment pathway. In those circumstances we consider
that it is appropriate that the court should determine whether it is in the child's best interests to
take PBs. There is a real benefit in the court, almost certainly with a child's guardian appointed,
having oversight over the decision. In any case, under the inherent jurisdiction concerning
medical treatment for those under the age of 18, there is likely to be a conflict between the
support of autonomy and the protective role of the court. As we have explained above, we
consider this treatment to be one where the protective role of the court is appropriate.

150: The claimants' alternative ground is that the information provided by the defendant and the Trusts
is inadequate to form the basis of informed consent. We accept that the defendant and the Trusts
have in their written information, to children, young people and their parents and carers, tried
hard to explain the potential consequences of PBs, including that of moving on to CSH, and to
give full information. They have also attempted to do this in an age appropriate manner. The
problem is not the information given, but the ability of the children and young people, to
understand and most importantly weigh up that information. The approach of the defendant
appears to have been to work on the assumption that if they give enough information and discuss
it sufficiently often with the children, they will be able to achieve Gillick competency. As we
have explained above, we do no

Conclusions

151. A child under 16 may only consent to the use of medication intended to suppress puberty where
he or she is competent to understand the nature of the treatment. That includes an
understanding of the immediate and long-term consequences of the treatment, the limited
evidence available as to its efficacy or purpose, the fact that the vast majority of patients
proceed to the use of cross-sex hormones, and its potential life changing consequences for a
child. There will be enormous difficulties in a child under 16 understanding and weighing up
this information and deciding whether to consent to the use of puberty blocking medication. It
is highly unlikely that a child aged 13 or under would be competent to give consent to the
administration of puberty blockers. It is doubtful that a child aged 14 or 15 could understand
and weigh the long-term risks and consequences of the administration of puberty blockers.

152. In respect of young persons aged 16 and over, the legal position is that there is a presumption
that they have the ability to consent to medical treatment. Given the long-term consequences
of the clinical interventions at issue in this case, and given that the treatment is as yet innovative
and experimental, we recognise that clinicians may well regard these as cases where the
authorisation of the court should be sought prior to commencing the clinical treatment.

5
The case was then the subject of an appeal to the Court of Appeal.

Bell v Tavistock [2021] EWCA Civ 1363

Judgement of the Court delivered by The Lord Burnett of Maldon CJ:

76. The ratio decidendi of Gillick was that it was for doctors and not judges to decide on the
capacity of a person under 16 to consent to medical treatment. Nothing about the nature or
implications of the treatment with puberty blockers allows for a real distinction to be made
between the consideration of contraception in Gillick and of puberty blockers in this case bearing
in mind that, when Gillick was decided 35 years ago, the issues it raised in respect of
contraception for the under 16s were highly controversial in a way that is now hard to imagine.
A similar conclusion was reached by Silber J in connection with abortion in R (Axon) v. Secretary
of State for Health [2006] QB 539 at para [86].

81. His conclusion on the law is found in the first sentence but the second recognises that the
question whether valid consent is given in any case is a question of fact. That depends upon the
individual circumstances of any child and the surrounding circumstances of the clinical issues.
Both he and Lord Fraser identified at a high level what they could expect a clinician to take into
account in making a clinical decision. Turning their observations into formal declarations (all the
more so if they included immutable facts) would have been inappropriate. It is a matter of clinical
judgement, tailored to the patient in question, how to explain matters to ensure that the giving or
refusal of consent is properly informed. As Lord Fraser observed at page 174F, medical
professionals who do not discharge their responsibilities properly would be liable to disciplinary
sanction. The law of informed consent culminating in Montgomery also exposes the vulnerability
of clinicians to civil action from someone they have treated who shows that they did so without
first obtaining informed consent.

82. In the circumstances, we would wish to make no comment on the comparisons that were
drawn between this case and the quite different situation in which the court is asked to approve
life-saving treatment for under-18s to which they or their parents are unable or unwilling to
consent.

83. The policy and practice under consideration in this case requires the informed consent of both
child and parents before Tavistock refers to the Trusts, again before either Trust prescribes
puberty blockers and once more before prescription of cross-sex hormones. This case is not
concerned with a child who lacks capacity to make the decision for the purposes of the Mental
Capacity Act 2005. Such a child would not be treated through GIDS because informed consent
is always required from the child before any treatment is given. We do not think that a comparison
between the exercise of assessing Gillick competence and the process envisaged under the Mental
Capacity Act 2005 (see Re X (A child) (No 2) [2021] 4 WLR 11 at para [72]) assists in this case.
Moreover, since the declaration formally concerns those under 16 it is not concerned with
children covered by section 8 of the 1969 Act.

84. In respectful disagreement with the Divisional Court we conclude that the declaration should
not have been granted.

6
 87. As we have already said, the principle enunciated in Gillick was that it was for clinicians
rather than the court to decide on competence.

88. The guidance did not take account of Lord Scarman’s dictum in Gillick itself at page 188B
that it was settled law following R v. D that “save where statute otherwise provides, a minor’s
capacity to make his or her own decision depends upon the minor having sufficient understanding
and intelligence to make the decision and is not to be determined by reference to any judicially
fixed age limit” or his earlier observation at page 186C that “rigid demarcations necessary to
achieve [certainty] should be laid down by legislation after a full consideration of all the relevant
factors [rather] than by the courts confined as they are by the forensic process … .” Finally, as
appears from AB, the guidance was insufficiently sensitive to the role of parents in giving
consent.

89. We conclude that it was inappropriate for the Divisional Court to give the guidance
concerning when a court application will be appropriate and to reach general age-related
conclusions about the likelihood or probability of different cohorts of children being capable of
giving consent. That is not to say that such an application will never be appropriate. There may
be circumstances where there are disputes between one or more of clinicians, patients and parents
where an application will be necessary, even if they are difficult to envisage under the service
specification and SOP with which this case is concerned.

Consequences of the Court of Appeal ruling.

1. Reasserts judicial orthodoxy- confirms the application of capacity under Gillick.

2. Makes clear that capacity to consent is a decision relative test

3. Recognises that it is inappropriate for the court to make very sweeping generalisations- c/f
Burke and later discussion of this case in relation to the “right to life” claim.

4. Where disputes arise however in some instances application to the Court would be
appropriate.

7
 III. WHO CAN GIVE CONSENT TO MEDICAL TREATMENT WHERE
CHILDREN DO NOT HAVE MENTAL CAPACITY TO MAKE THEIR
OWN TREATMENT DECISIONS?

(a) Parental Responsibility

First, treatment decisions can be taken by the person with parental responsibility. The mother of the child
born automatically has parental responsibility. In the case of the father he will have parental
responsibility where he is married or in a civil partnership with the mother.
In the case of an unmarried father in relation to births after 1st December 2003 where he has jointly
registered the birth with the mother he will have parental responsibility. Unmarried fathers may also
obtain parental responsibility with agreement of the mother or a court order. Same sex partners who
were in a civil partnership when fertility treatment is undertaken will both have parental responsibility.
In the case of same-sex partners who are not civil partners the second parent is able to get parental
responsibility by application to the court for parental responsibility or by becoming a civil partner of
the other parent and making a parental responsibility agreement or jointly registering the birth of the
child. (See further sections 2-4A of the Children Act 1989)

Treatment decisions can also be undertaken by a person holding a residence order (s.12 Children
Act1989) or a local authority (s.33 Children Act 1989)
Note that in an emergency a person without parental responsibility may do what is reasonable in
all the circumstances of the case for the purpose of “safeguarding or promoting the child’s welfare”
(s 3(5)).

See R (on the application of G) v Nottingham City Council {2008] EWHC 152 (Admin), per Sir
James Munby

25. For instance, medical intervention might be required in order to preserve the child's
life or to protect a child from irreversible harm in circumstances of such urgency that
there is not even time to make an urgent telephone application to a judge. In such a
situation of emergency a doctor can act without parental or judicial consent and, if
parents are acting unreasonably or contrary to the child's best interests, even despite a
parental refusal of consent: see Grubb, Principles of Medical Law, ed 2, para 4.21

26. Doctors, midwives and nurses do not have to stand idly by waiting for a court order
if, for example, a premature baby desperately needs to be put in a special unit or
placed on a ventilator. They are of course entitled to separate the child from the
mother if medical necessity dictates, and even if she objects. Law, medical ethics
and common sense march hand in hand.”

8
 (b) The role of the Court

The court can also make a decision in relation to the medical treatment of a child. Ultimately the
court can override the decision of a parent or competent child regarding their own treatment if it
is deemed in the child’s best interests to do so (c/f the position in relation to the competent adult
discussed in the previous block of lectures)

Inherent jurisdiction
Re D (A Minor) (Wardship: Sterilisation) [1976] Fam 185

Children Act 1989 s1:

(1) When a court determines any question with respect to

(a) the upbringing of a child; or

(b) the administration of a child’s property or the application of any income arising
fromit,

the child’s welfare shall be the court’s paramount consideration.

S. 1(3) sets out the ‘welfare checklist’:

(3) In the circumstances mentioned in subsection (4), a court shall have regard
in particular to
(a) the ascertainable wishes and feelings of the child concerned (considered in
the light of his age and understanding);
(b) his physical, emotional and educational needs;
(c) the likely effect on him of any change in his circumstances;
(d) his age, sex, background and any characteristics of his which the court
considers relevant;
(e) any harm which he has suffered or is at risk of suffering;
(f) how capable each of his parents, and any other person in relation to whom the
court considers the question to be relevant, is of meeting his needs;
(g) the range of powers available to the court under this Act in the proceedings in
question.

(4) The circumstances are that—

(a) the court is considering whether to make, vary or discharge a section 8 order, and
the making, variation or discharge of the order is opposed by any party to the
proceedings; or
(b) the court is considering whether to make, vary or discharge [a special
guardianship order or] 2 an order under Part IV.

In applying the welfare test the court determines whether a particular treatment is in the best
interests of the child.

9
If a disputes arises between clinicians, parents and/or child regarding a particular treatment
then the matter should be referred to the courts to determine e.g. under section 8 of the
Children Act 1989- specific issue order.

Glass v UK [2004] 1 FLR 1019

79. It has not been explained to the Court’s satisfaction why the Trust did not at that stage seek the
intervention of the High Court. The doctors during this phase all shared a gloomy prognosis of the
first applicant’s capacity to withstand further crises. They were left in no doubt that their proposed
treatment would not meet with the agreement of the second applicant. Admittedly, the second
applicant could have brought the matter before the High Court. However, in the circumstances it
considers that the onus was on the Trust to take the initiative and to defuse the situation in anticipation
of a further emergency.

80. The Court can accept that the doctors could not have predicted the level of confrontation and
hostility which in fact arose following the first applicant’s readmission to the hospital on 18 October
1998. However, in so far as the Government have maintained that the serious nature of the first
applicant’s condition involved the doctors in a race against time with the result that an application by
the Trust to the High Court was an unrealistic option, it is nevertheless the case that the Trust’s failure
to make a High Court application at an earlier stage contributed to this situation.

81. That being said, the Court is not persuaded that an emergency High Court application could not
have been made by the Trust when it became clear that that the second applicant was firmly opposed
to the administration of a diamorphine to the first applicant. However, the doctors and officials used
the limited time available to them in order to try to impose their views on the second applicant. It
observes in this connection that the Trust was able to secure the presence of a police officer to oversee
the negotiations with the second applicant but, surprisingly, did not give consideration to making a
High Court application even though “the best interests procedure can be involved at short notice” (see
the decision of Mr Justice Scott Baker in the High Court proceedings at paragraph 38 above).

82. The Court would further observe that the facts do not bear out the Government’s contention that
the second applicant had consented to the administration of diamorphine to the first applicant in the
light of the previous discussions which she had had with the doctors. Quite apart from the fact that
those talks had focused on the administration of morphine to the first applicant, it cannot be stated
with certainty that any consent given was free, express and informed. In any event, the second
applicant clearly withdrew her consent, and the doctors and the Trust should have respected her
change of mind and should not have engaged in rather insensitive attempts to overcome her
opposition.

83. The Court considers that, having regard to the circumstances of the case, the decision of
the authorities to override the second applicant’s objection to the proposed treatment in the
absence of authorisation by a court resulted in a breach of Article 8 of the Convention. In view
of that conclusion, it does not consider it necessary to examine separately the applicants’ complaint
regarding the inclusion of the DNR notice in the first applicant’s case notes without the consent and
knowledge of the second applicant. It would however observe in line with its admissibility decision
that the notice was only directed against the application of vigorous cardiac massage and intensive
respiratory support, and did not exclude the use of other techniques, such as the provision of oxygen,
to keep the first applicant alive.

10
 IV. ADOLESCENTS REFUSING MEDICAL TREATMENT

In this section we consider a number of cases determined by the courts in which teenagers both
under 16 and between 16-18 years of age have refused medical treatment. These cases illustrate
that in contrast to the cases we considered in the lectures concerning Capacity and adults the
autonomy of a competent adolescent extends to consent but critically not to refusal of medical
treatment.

Background Reading see

C. Bridge “Adolescents and Mental Disorder: Who Consents to Treatment?” [1997] 3

Medical Law International 51
G. Douglas “The Retreat from Gillick” [1992] 55 Modern Law Review 575
M. Brazier and C. Bridge “Coercion or Caring: Analysing Adolescent Autonomy” (1996)
Legal Studies 84
J. Bridgeman, “Old Enough to Know Best?” (1993) 13 Legal Studies 69

Re E (A Minor) (Wardship: Medical Treatment) [1991] 1 FLR 386

“I am quite satisfied that A does not have any sufficient comprehension of the pain he has
yet to suffer, of the fear that he will be undergoing, of the distress not only occasioned by
that fear but also – and importantly – the distress he will inevitably suffer as he, a loving
son, helplessly watches his parents' and his family's distress. They are a close family, and
they are a brave family, but I find that he has no realisation of the full implications which
lie before him as to the process of dying. He may have some concept of the fact that he
will die, but as to the manner of his death and to the extent of his and his family's suffering
I find he has not the ability to turn his mind to it nor the will to do so. Who can blame
him for that?” Per Ward J

Note: This case was dramatized in a novel by Ian McEwan the Children Act (2014) and in the
film of the same name released in 2017 staring Emma Thompson.

11
Re R (A Minor: Wardship: Medical Treatment) [1992] 1 FLR 190.

Lord Donaldson:
“One glance at the consequences suffices to show that Lord Scarman cannot have been
intending to say that the parental right to consent terminates with the achievement by the
child of ‘Gillick competence’.”

Re W (A Minor) (Medical Treatment) [1992] 3 WLR 758

“No minor of whatever age has power by refusing consent to treatment to override a
consent to treatment by someone who has parental responsibility for the minor.
Nevertheless such a refusal was a very important consideration in making clinical
judgements and for parents and the court in deciding themselves whether to give
consent” (per Lord Donaldson)

“On reflection I regret my use in Re R (a minor) (wardship medical treatment) ..of the
keyholder analogy because keys can lock as well as unlock. I now prefer the analogy of
the legal flak jacket which protects the doctor from claims by the litigious whether he
acquires it from his patient who may be a minor over the age of 16 or a “Gillickcompetent”
child under that age or from another person having parental responsibilities which include
a right to consent to treatment of the minor. Anyone who gives him a flak jacket may take
it back, but the doctor needs only one and so long as he continues to have one he hasthe
legal right to proceed” ( per Lord Donaldson).

Re M (child: refusal of medical treatment) [1999] 2 FLR 1097

"There are risks attached to the operation itself and there are risks continuing thereafter,
both in terms of rejection in the medical sense and rejection by M of the continuing
medical treatment. “There is the risk too that she will carry with her for the rest of her life
resentment about what has been done to her. Whatever that risk may be, and it is impossible
to assess, it has to be matched against not simply the risk but the certainty of death." Per
Johnson J

12
After the court’s ruling was explained to her M gave her consent and the operation went ahead.

S. Boseley and C.Dyer “New Heart for Dying Girl Who Refused Consent”
https: //www.theguardian.com/uk/1999/jul/16/claredyer.sarahboseley

E. Cave, ‘Goodbye Gillick? Identifying and resolving problems with the concept of child
competence’ (2014) 34(1) Legal Studies 103.

The Case of Hannah Jones

“Girl of 13 wins the Right to Refuse a Heart Transplant”, 11th November 2008,
https://www.independent.co.uk/life-style/health-and-families/health-news/girl-13- wins-
right-to-refuse-heart-transplant-1009569.html

Hannah changed her mind in 2009

“Right to Die Teenager Hannah Jones changes her mind about heart transplant”
https://www.theguardian.com/uk/2009/jul/21/hannah-jones-heart-transplant

See also BBC TV in 2018- https://www.bbc.co.uk/news/av/uk-43110989/heart-

transplant-patient-hannah-jones-reunited-with-surgeon

13
X (A Child) (No 2) [2021] EWHC 65 (Fam)

X, was 15 years old refusing blood transfusion- was a Jehovah’s Witness. X was accepted as being
“Gillick” competent. Application was made for a “rolling order”. This would authorise “top up”
blood transfusions in relation to X. In his judgment Sir James Munby also considered the position up
until her 18th birthday.

Sir James Munby:

28. I have been referred to, though taken specifically to only a very small part of, a substantial
volume of academic legal literature, medical literature, social sciences literature and
comparative jurisprudence. Much of this is of absorbing interest but most of it is of only limited
use; I have referred to it where it assists. So far as concerns the academic legal literature it is
important to note that the Academy, academia, does not speak with one voice.

57. In the light of this elaboration, we can now refine the Donaldson analysis so it may be
summarised as follows: (1) Until the child reaches the age of 16 the relevant inquiry is as
to whether the child is Gillick competent. (2) Once the child reaches the age of 16:
(i) the issue of Gillick competence falls away, and (ii) the child is assumed to have
legal capacity in accordance with section 8, unless (iii) the child is shown to lack mental
capacity asdefined in sections 2(1) and 3(1) of the Mental Capacity Act 2005.

Sir James then considers the submissions regarding the judgments in the Court of Appeal in Re R and
Re W as being obitur and then continues by saying

58. For the purposes of section 8 we are concerned only with legal capacity; the effect
of the statute, in relation to its specific subject matter (medical treatment) is, as it were, to
reduce the age of majority from 18 to 16 – that, and no more. Section 8 is not concerned with
and does not operate so as to deem the child to have mental capacity.

59. Mr Brady submits, with support from Ms Butler-Cole and Mr Ruck Keene, that much of all
this was obiter. For in In re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam 11 it
was common ground, both at first instance and in the Court of Appeal, that the child lacked
Gillick capacity. And in In re W (A Minor) (Medical Treatment: Courts Jurisdiction) [1993]
Fam 64 the Court of Appeal doubted the trial judge’s finding of competence, though it is not at
all obvious that this was the basis of its decision. However, be that as it may, as a great judge
once said, there are obiter dicta and obiter dicta. As Megarry J explained in Brunner v
Greenslade [1971] Ch 993, 1002: “a mere passing remark, or a statement or assumption on
some matter that has not been argued, is one thing; a considered judgment on a point fully
argued is another, especially where, had the facts been otherwise, it would have formed part of
the ratio. Such judicial dicta, standing in authority somewhere between a ratio decidendi and
an obiter dictum, seem to me to have a weight nearer to the former than the latter.”

60. Here, we have two authorities in each of which the Court of Appeal, having had the benefit of
vigorous adversarial arguments by Leading Counsel, delivered three lengthy judgments dealing
with the points at issue in carefully considered and commanding detail. Indeed, as we have
seen, in In re W (A Minor) (Medical Treatment: Courts Jurisdiction) [1993] Fam 64, where the
14
 hearing spread over 3 days, the court deliberately reconsidered what it had previously said in
In re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam 11 because of the criticism to
which it had been subjected. How sensibly can this be treated as mere obiter? I do not
criticise counsel for taking the point, but I have to say that it is the kind of point which
probably has more traction amongst the dreaming spires of the Academy than in the
robust and ultimately pragmatic world of the court room. We have to remember that the
common law developed over the centuries as a process by which practical lawyers sought
pragmatic, if principled, solutions to the practical problems thrown up by the
unpredictable process of litigation, and that at the root of the process was the system of
oral adversarial argument. In Cordell v Second Clanfield Properties Ltd [1969] 2 Ch 9, 16,
Megarry J, citing the venerable words of Hankford J in 1409, referred to the “purifying ordeal
of skilled argument on the specific facts of a contested case” and observed that:

“Argued law is tough law. This is as true today as it was in 1409 … Today, as of old,
by good disputing shall the law be well known.”

Having gone through what I should like to think was the purifying ordeal, what emerged from
the assay in the Court of Appeal in In re W (A Minor) (Medical Treatment: Courts Jurisdiction)
[1993] Fam 64 was surely the tough law of which Megarry J spoke.

61. Both In re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam 11 and in In re W (A

Minor) (Medical Treatment: Courts Jurisdiction) [1993] Fam 64 have been much criticised in
the Academy (though, as already noted, the Academy here is far from unanimous), but they
have been consistently followed and applied by the judges down the years: …… [Sir James
cites a raft of leading authorities and then continues] “In none of these cases, it may be
noted, did the judges give the slightest indication of any doubt as to whether the decisions in In
re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam 11 and in In re W (A Minor)
(Medical Treatment: Courts Jurisdiction) [1993] Fam 64 were good law or the slightest hint
that perhaps the law as stated in them needed reconsideration.

Sir James considers arguments that here not respecting the minor’s autonomy constitutes a
violation of the ECHR.: On Article 3 ECHR he goes onto say:

120. There is, so far as I am aware, nothing in the jurisprudence of the Strasbourg court recognising,let
alone mandating States to enforce, a principle that a child, even a child who, to use our
terminology, is Gillick competent or who has reached the age of 16, is in all circumstances
autonomous in the sense that a capacitous adult is autonomous; nor, specifically, that such a
child is autonomous when it comes to deciding whether or not to accept life-saving medical
treatment.

Sir James also took the same approach here in rejecting the application of Article 8.

15
 Regarding the relationship between the Gillick test and the Mental Capacity Act test for
capacitySir James Munby notes that:

74. In this connection I was referred the decision of Cobb J in In re S (A Child) (Child Parent:
Adoption Consent) [2017] EWHC 2729 (Fam), [2019] Fam 177, [2018] 2 FLR 111, paras 15-
16, 60, cited with seeming approval by the Divisional Court in Bell & Anor v The Tavistock
And Portman NHS Foundation Trust [2020] EWHC 3274 (Admin), paras 116-118. For present
purposes it suffices to refer to Bell (para 116):
“In [In re S] Cobb J considered the competence of a mother under the age of 16 to consent to
her baby being placed for adoption. Cobb J held that it was appropriate and helpful in
determining Gillick competence to read across and borrow from the relevant concepts and
language in the Mental Capacity Act 2005 but cognisant of some fundamental differences, in
particular that the assumption of capacity in section 1(2) of that Act did not apply and there
was no requirement for any diagnostic characteristic as there is in section 2(1) of the Mental
Capacity Act 2005.”

Although nothing turns on the point for present purposes, I myself would respectfully disagree
with this approach. Its premise is that Gillick competence is in some way related or even
analogous to capacity in the sense in which the expression is used in the 2005 Act. It is not; the
two are, as I have said, both historically and conceptually quite distinct.

NOTES:

1. Case is significant in it confirms comprehensively the approach in Re R and Re W.

2. It clearly sets out the rules re capacity and treatment decisions between 16-18.

3. It provides a rejection of the application of the ECHR as determinative in refusal of treatment

cases- notable reference here to Article 3 and Article 8 ECHR.

4. There is clarification of the application of s8 Family Law Reform Act 1969- this is simply a
legal capacity test – not a mental capacity test.

5. On Gillick competence- also rejects that this is the same as the Mental Capacity Act 2005.

See further:
E. Cave “Confirmation of the High Court’s Power to Override a Child’s Treatment Decision:
A NHS Trust v X (In the matter of X (A Child) (No 2))” [2021] EWHC 65(Fam) [2021] 29
Medical Law Review 537.

16
 V. DISPUTES BETWEEN PARENTS AND DOCTORS CONCERNING
MEDICAL TREATMENT OF YOUNG CHILDREN: PARENTAL
AUTONOMY AND “FUTILE” TREATMENT

In this final section of the lectures concerning consent and children we consider the limitations
on parental autonomy to make treatment choices for their children through the prism of 5 high
profile and controversial cases and one case which, until very recently might have thought to be
an aberration. We begin by examining the case of Ashya King concerning a dispute regarding
access to a treatment not available in the NHS for children with Ashya’s condition. Secondly we
consider the cases of very young infants, Charlie Gard, Alfie Evans and Isaiah Haastrup- all of
which involved the decision as to whether to withdraw treatment where further treatment was
considered futile. We consider the application of the “best interests” test and whether an
alternative approach of “substantial harm” should be adopted. In all these cases there were
multiple court hearings, and particularly in Gard and Evans major public controversy attracting
involvement of high profile figures.

We then discuss the case of Re T in 1997 concerning respecting parental choice for a child not to
receive a treatment which had a very high success rate. Finally, we consider the case of Tafida
Raqeeb in which the court in examining best interests made reference to the human rights of
parents in relation to not only privacy underArticle 8 of the ECHR but also matters of faith and
belief under Article 9 of the ECHR. Finally we consider proposals which have been advanced
for reform of the law in this area.

Re Ashya King [2014] EWHC 2964 (Fam)

“Ashya King cleared of cancer three years after his parents abducted him from hospital
for treatment abroad”, Daily Telegraph, 3rd March 2018.
https://www.telegraph.co.uk/news/2018/03/03/ashya-king-cleared-cancer-three-years-
parents-abducted-hospital/#

It was reported on 23rd January 2019 that a 15 year old boy with a rare brain tumour would
be the first patient to receive proton beam therapy on the NHS at the Christie Hospital
Manchester,
https://www.theguardian.com/society/2019/jan/23/teenager-with-brain-tumour-to-
undergo-proton-beam-
therapy#:~:text=A%2015%2Dyear%2Dold%20with,the%20risk%20of%20side%
2Deffects.

17
 The Charlie Gard Litigation

Great Ormond Street Hospital v Yates, Gard and Gard [2017] EWHC 972

In the Matter of Charles Gard [2017] EWCA Civ 410

In the matter of Charlie Gard 8th June 2017 in the Supreme Court (permission to appeal hearing)

https://www.supremecourt.uk/news/permission-to-appeal-hearing-in-the-matter-of-charlie-
gard.html

“So, parents are not entitled to insist upon treatment by anyone which is not in their
child's best interests. Furthermore, although a child can only be compulsorily removed
from home if he is likely to suffer significant harm, the significant harm requirement
does not apply to hospitals asking for guidance as to what treatment is and is not in the
best interests of their patients …

Finally, the European Court of Human Rights has firmly stated that in any judicial
decision where the rights under Article 8 of the parents and the child are at stake, the
child's rights must be the paramount consideration. If there is any conflict between them
the child's interests must prevail” per Lady Hale

Judgment of the UK Supreme Court in the case of Charles Gard, 19th June 2017
https://www.supremecourt.uk/cases/docs/charlie-gard-190617.pdf

J. Glenza “How Charlie Gard captured Trump's attention and animated pro-life groups”
https://www.theguardian.com/uk-news/2017/jul/26/charlie-gard-us-pro-life-rightwing-ethics

7th July 2017 – Charlie Gard’s parents apply to court for new hearing
https://www.theguardian.com/uk-news/2017/jul/07/charlie-gard-hospital-applies-to-high-court-for-
fresh-hearing

Gard and Others v the United Kingdom App no 39793/17 (Commission Decision [2017]
ECHR 605, 27 June 2017.

New case brought before the court by Charlie Gard’s parents – 24th July 2017.

GOSH v Yates [2017] EWHC 1909 (Fam)

H. Siddique and S. Boseley “Charlie Gard's parents end legal battle as time runs out for critically ill
baby” https://www.theguardian.com/uk-news/2017/jul/24/charlie-gard-parents-end-legal-fight-over-
critically-ill-baby

Charlie Gard died on 28th July 2017.

S. Meyer “Charlie Gard dies in hospice after High Court rules against prolonging life support” (2017)
British Medical Journal, https: //www.bmj.com/content/358/bmj.j3673

18
The Alfie Evans litigation

Alfie Evans- born 9th May 2016- transferred to Alder Hey Hospital December 2018

20th February Initial first instance hearing before Hayden J

Alder Hey NHS Trust v Evans [2018] EWHC 308.

6th March 2018 Appeal to the Court of Appeal-

Re E (a child) [2018] EWCA Civ 550.

20th March 2018 Appeal to the Supreme Court-

In the Matter of Evans-Permission to Appeal Determination

https://www.supremecourt.uk/news/permission-to-appeal-determination-in-the-matter-of-
alfie- evans.html

14 “The gold standard, by which most of these decisions are reached, is an

assessmentof his best interests. The first provision in the Children Act is that
the child's welfare shall be the court's paramount consideration. Parliament's
provisionreflects international instruments, particularly the UN Convention on
the Rights of the Child. And in the Human Rights Convention, the rights of
a child under article 8 will, if inconsistent with the rights of his parents, prevail
over them.
15 But Parliament has provided that in care proceedings there should be an initial
hurdle, namely the establishment of significant harm or its likelihood, attributable
to the parents, before an assessment of the child's best interests can be reached. For
in such proceedings a powerful extra objective is in play, namely to avoid social
engineering. These are proceedings by the state to remove a child from his parents.
Families need protection from too ready a removal of him. It might be arguable that
a child growing up in many households today would be better off elsewhere. But
Parliament has provided that that should not be a strong enough reason for removing
him. Significant harm must be established.

16 The present proceedings are quite different; and the gold standard needs to
apply to them without qualification. Doctors need to know what the law
requires of them. The founding rule is that it is not lawful for them (or any
other medical team) to give treatment to Alfie which is not in his interests. A
decision that, although not in his best interests, Alfie's continued ventilation
can lawfullycontinue because (perhaps) it is not causing him significant harm
would be inconsistent with the founding rule.
17 We are satisfied that the current law of England and Wales is that decisions about
the medical treatment of children, like those about the medical treatment of adults,
are governed by what is in their best interests. We are also satisfied that this does
not discriminate against the parents of children such as Alfie in the enjoyment of
their rightto respect for their family life because their situation is not comparable
with that of theparents of children who are taken away from them by the state to be
brought up elsewhere.” Per Lady Hale, Lord Kerr and Lord Wilson.
19
 Case taken to the ECHR- 28th March

“ECHR declares application by parents of Alfie Evans inadmissible” ECHR 118

(2018)28.03.2018

11th April 2018- next hearing in the Family Division

Alder Hey Children’s NHS Foundation Trust v Evans [2018] 818 (Fam)

Case follows from order of Lady King on 18th March 2018 that if parties didn’t agree on or
before the 23rd March the terms of the end of life plan and withdrawal of artificial
nutrition/hydration should come before Hayden J. Here Hayden J endorsed the care plan.

12th April
Protests outside the hospital and Tom Evans seeks to get Alfie returned to him
https://www.independent.co.uk/news/uk/home-news/alfie-evans-alder-hey-hospital-
protest- toddler-life-support-terminally-ill-a8302196.html

16th April Alfie Evans’ parents then appeal to the Court of Appeal

Evans v Alder Hey Children’s NHS Foundation Trust [2018] EWCA Civ 805 – Court of
Appealhearing on the 16th April. Submissions made that

- Previous court decisions were wrong

- Parents views “trump” best interests
- Alfie Evans was being unlawfully detained in hospital and a writ of habeas corpus
applies for

All these arguments were rejected. The Court of Appeal held that

“51. The application of a different legal label, namely habeas corpus, does not
change the fact that the court has already determined the issues which the parents
now seek,again, to advance. Their views, their rights do not take precedence and
do not givethem an "unfettered right" to make choices and exercise rights on
behalf of Alfie. As t he Supreme Court said in this case the rights of the child
will, if inconsistent with the rights of the parents, prevail over them. The "gold
standard “for determining the rights of a child, including decisions about medical
treatment, is by an objective assessment of and decision as to what is in his best interests.
There has been a thorough, rigorous assessment leading to a decision which has been
upheld by the Court of Appeal and the Supreme Court.There is no scope for the same
issues to be re-litigated through a different legal label.

52. Additionally, we deal specially with Mr Diamond's submission that Alfie's best
interests are irrelevant. In any context, but specifically in the circumstances of this
case, that is a startling proposition. The universal consensus as to the importance of the
20
 rights and interests of children is reflected in the extent to which the UNCRC has been
ratified. Further, it can,we think, now safely be said that the courts of England and
Wales are vigilant guardiansand promoters of the rights and interests of children. This
has not always been the case but it has become a fundamental aspect of our justice
system. This does not mean, of course, that those rights and interests override all
other rights and interests but, as has been determined with considerable clarity in
this case, Alfie's best interests are determinative when a court has to decide what
treatment he should or should not receive. It is wholly wrong therefore, to suggest
that the parents own views can trump the judicial determination made in this
case. It is also precisely because of that judicial determination that Alfie has been
lawfully kept in Alder Hey Hospital.”

“para 67. In conclusion, the case advanced on behalf of the parents again seeks to
maketheir own views prevail. This is the foundation on which their present application
is based. That it provides no foundation at all has already been made established by
the previousdecisionsin this case. Preventing them from removing Alfie from hospital
does not breachtheir rights. Indeed, it would breach Alfie’s right to have decisions made
as to what treatmenthe should receive by application of the test of his best interests.
That this is the right test

– the "gold standard" – is clear. The decision must be governed by an objective assessment
by the court of what is in the child’s best interests. By that test the court determined
whetherAlfie's future treatment, including the withdrawal of ventilation, should take
place at the hospital in England or whether, as the parents sought, they should be
permitted to take him to another hospital for the purposes of his receiving treatment
there. Hayden J determinedthat the parents ‘proposals were "irreconcilable with Alfie's
best interests". This decision wasupheld by the Court of Appeal which expressly stated
that "transfer to another country could not possibly be in Alfie’s best interests."

18th April 2018 Tom Evans travels to Rome to meet Pope Francis.
https://www.theguardian.com/uk-news/2018/apr/18/alfie-evans-father-pope-francis-save-
son- life-support

20th April 2018 Application to the Supreme Court

In the matter of Alfie Evans No 2

UK Supreme Court 20th April 2018 https: //www.supremecourt.uk/docs/in-the-
matter-of-alfie- evans-court-order.pdf

Here application was made on basis of habeas corpus and under Article 5 of the ECHR.

“Para 12 They now complain that Alfie is being denied of his liberty contrary to Article 5 of
the Convention. A person who is unable to move because of the measures which
are being taken in intensive care to keep him alive is not deprived of his liberty
withinthe meaning of Article 5. It is also seriously open to question whether a
baby who isincapable of staying alive without the artificial nutrition and hydration
currently beingprovided to Alfie is being deprived of his liberty. But what is not
open to question is that those measures can only be imposed, whether on a child
or on an adult personwho is unable to make the decision for themselves, if they
are in the best interests of the person concerned. That is the “gold standard”. So,
if this were “deprivation of liberty “it would not be lawful if it was in Alfie’s best
interests.
21
 Para 13 “ It has been conclusively determined that it is not in Alfie’s best interest not
only to stay in Alder Hey Hospital being treated as he currently is, but also to travel
abroad forthe same purpose. Itis not lawful, therefore to continue to detain him, whether
in Alder-Hey or elsewhere for that purpose. The release to which he is entitled,
therefore, is release from the imposition of treatment which is not in his best
interests” per Lady Hale, LordKerr and Lord Wilson

Events of the week of 23rd April 2018

The final days of Alfie Evans life was the subject of high profile litigation and controversy:

Monday 23rd April 2018-

Admissibility hearing at ECHR unsuccessful https:

//www.echr.coe.int/Documents/Decision_Evans_v_UK.pdf

Alfie Evans is granted Italian citizenship

BBC News “Alfie Evans granted Italian citizenship in life support legal
row”https://www.bbc.co.uk/news/uk-england-merseyside-43872678

13: 30pm Monday 23rd April – telephone hearing with Hayden J-

reject application. Followed by telephone application to Court of
Appeal- againrejected.

See also A. Shephard “Anger as Alfie’s Army protests outside Alder Hey” (2018)
361BMJpublished 25th April 2018

Monday 23rd April 21:45 – life support withdrawn. Alfie Evans breathes unaided.
After9 hours he is given oxygen.

Tuesday 24th April 2018

Alder Hey Children’s Foundation Trust v Evans [2018] EWHC 953 (Fam) Per Hayden J.

KeyIssues examined:
Issue of “habitual residence” and whether he could be “returned” to Italy- Alfie
Evans was habitually resident in the UK (Re B (A Child) (Habitual Residence:
InherentJurisdiction) [2016] UKSC 4)

Prosecution of the doctors_

Crossing Lord Goff’s Rubicon? The Private prosecution of doctors from Alder Hey
Hospitalc/f Fr Murrow and Tony Bland (“Priest Loses first attempt to prosecute Bland
doctor” TheIndependent 17th March 1993). Rejected by District Judge.

The court dismisses the action on the basis of no change in medical condition.
22
 Wednesday 25th April 2018

Action is then brought before the Court of Appeal where parents are represented by
separatecounsel- Jason Coppel steps in to represent Alfie’s mother Kate Evans.

Evans v Alder Hey [2018] EWCA Civ 984

Court of Appeal (Macfarlane J, King J and Coulson J) reject the appeal-. Raise
seriousconcerns as to some of the legal advice given to the parents.

Thursday 26th April 2018

Tom Evans makes a statement that the family are now working to “build a bridge” with the
staff in Alder Hey.
https: //www.theguardian.com/uk-news/2018/apr/26/alfie-evans-parents-to-meet-doctors-
to- discuss-taking-boy-home

Subsequently treatment is withdrawn and Alfie Evans dies Saturday 28th April 2018

J. Grierson“Alfie Evans dies at Alder Hey hospital after life support withdrawn” The Guardian
28th April 2018, https://www.theguardian.com/uk-news/2018/apr/28/alfie-evans-dies-after-
withdrawal-of-life-support
D. Wilkinson and J.Salvescue “Alfie Evans and Charlie Gard- should the law
change?” (2018) 361 BMJ k891.

The Isiah Haastrup Litigation

Kings College London NHS Foundation Trust v Thomas and Haastrup [2018] EWHC 127.

Case rejected by Court of Appeal- C. Davies “UK parents lose legal battle to keep baby
withbrain damage on life support” The Guardian 23rd February 2018 https:
//www.theguardian.com/law/2018/feb/23/parents-lose-legal-battle-keep-brain-damaged-
uk-baby-isaiah-haastrup-life-support

Admissibility hearing at ECHR rejected- March 2018

C. Davies “European court rejects appeal in Isaiah Haastrup life support case” The
Guardian, 20th March 2018

23
 Implications of Gard, Evans and Haastrup cases

- Ultimately “best interests- gold standard.

- Test for adults/children is that of futility.

- Human Rights Act does not change the position-parents Article 8 rights did not override
thoseof the child.

- Parents have no right to demand specific treatment and parental wishes do

- not override the best interests of the child.

See also:

J. Bridgeman “Gard and Yates v GOSH, the Guardian and the United Kingdom:
Reflections on the Legal Process and Legal Principles” [2017] 17 Medical Law
International 285.

E. Cave and E. Nottingham “Who knows best (interests)? The case of Charlie Gard” (2018)
26(3) Medical Law Review 500.

C. Auckland and I. Gould “Defining the limits of parental authority: Charlie Gard, best
interests and risk of significant harm threshold” (2018) 134 L.Q.R. 37
J. Salvescue “Hard lessons: learning from the Charlie Gard case” (2018) 44(3) Journal of
Medical Ethics- see also the collection of papers on Gard in this special edition of the Journal
of Medical Ethics. https://jme.bmj.com/content/44/7/438

24
A matter of respecting parental choice despite the child’s best interests?

Re T (a minor) (Wardship Medical Treatment) [1997] 1 All ER 906.

“The welfare of the child is the paramount consideration and I recognise the "very strong
presumption in favour of a course of action which will prolong life" and the inevitable
consequences for the child of not giving consent. But to prolong life, as Lord Donaldson MR
recognised in somewhat different circumstances, is not the sole objective of the court and to
require it at the expense of other considerations may not be in a child`s best interests. I would
stress that, on the most unusual facts of this case with the enormous significance of the close
attachment between the mother and baby, the court is not concerned with the reasonableness
of the mother`s refusal to consent but with the consequences of that refusal and whether it is
in the best interests of C. for this Court in effect to direct the mother to take on this total
commitment where she does not agree with the course proposed. The effect of the evidence
of Dr P respecting the mother`s decision and the prospect of forcing the devoted mother of this
young baby to the consequences of this major invasive surgery lead me to the conclusion,
after much anxious deliberation, that it is not in the best interests of this child to give consent
and require him to return to England for the purpose of undergoing liver transplantation. I
believe that the best interests of this child require that his future treatment should be left in
the hands of his devoted parents. Once the pressure of this litigation is over it may be the
parents will reconsider whether they should remain in Country AB or should return to this
country and attend at Hospital Y with a view to a further assessment for the purpose of
carrying out the operation. That however will be a matter for them and not for this Court.”
Per Butler Sloss LJ.

“All these cases depend on their own facts and render generalisations - tempting though they
may be to the legal or social analyst - wholly out of place. It can only be said safely that there
is a scale, at one end of which lies the clear case where parental opposition to medical
intervention is prompted by scruple or dogma of a kind which is patently irreconcilable with
principles of child health and welfare widely accepted by the generality of mankind; and that
at the other end lie highly problematic cases where there is genuine scope for a difference of
view between parent and judge. In both situations it is the duty of the judge to allow the
court's own opinion to prevail in the perceived paramount interests of the child concerned,
but in cases at the latter end of the scale, there must be a likelihood (though never of course
a certainty) that the greater the scope for genuine debate between one view and another the
stronger will be the inclination of the court to be influenced by a reflection that in the last
analysis the best interests of every child include an expectation that difficult decisions
affecting the length and quality of its life will be taken for it by the parent to whom its care
has been entrusted by nature.” Per Thwaites LJ.

See also M. Fox and J. McHale “In Whose Best Interests?” [1998] 60(5) Modern Law Review
700.

25
 Human Rights and disputes between clinicians and parents: a matter of faith and belief?

Raqeeb v Barts NHS Foundation Trust: Barts NHS Foundation Trust v Begum [2019] EWHC
2531 (Admin). [2019] EWHC 2530 (Fam).

In the first hearing the parents sought treatment for child in Italy. They claimed Article 56 freedom
of services rights under the EU law. In relation to the second hearing the issue was whether
treatment was futile and should be withdrawn.

“182. Within the context I have set out above, in circumstances where Tafida
is not in pain, where the burden of the treatment is low, where there is a
responsible body of medical opinion that considers that she can and should
be maintained on life support with a view to her being cared for at home on
ventilation by her family in the same manner in which a number of children
in a similar situation to Tafida are treated in this jurisdiction, where there is a
funded care plan to this end, where Tafida can be safely transported to Italy,
where the continuation of life-sustaining treatment is consistent with the
religious and cultural tenets by which Tafida was being raised and having
regard to the sanctity of Tafida's life, this case does in my judgment lie
towards the end of the scale where the court should give weight to the
reflection that in the last analysis the best interests of every child include an
expectation that difficult decisions affecting the length and quality of the
child's life will be taken for the child by a parent in the exercise of their
parental responsibility. Further, whilst I did not hear detailed submissions
on the import of Art 8 of the ECHR in the context of this case, and whilst
the Art 8 rights of the parents are subordinate to the best interests of the
child where the two conflict, in the circumstances I have just summarised
there is in my judgment a cogent argument that the making of orders the
effect of which would be to override the choice made by the parents in
the exercise of their parental responsibility would not constitute a
necessary and proportionate justification for the interference in their Art
8 rights that would thereby occur.

183. Within this context, whilst not determinative, the Art 9 rights of the
parents and of Tafida to freedom of thought, conscience and religion fall
for consideration in this case and in my judgment must be accorded
weight in the balancing exercise in circumstances where the parents'
beliefs, which beliefs would have influenced Tafida, included the belief
that to withdraw life sustaining treatment from Tafida would be a sinin
circumstances where they believe that where the breath of life subsists so
too the soul.

186 The court must face head on the question of whether it can be said that the
continuation of life sustaining treatment is in Tafida's best interests. There
will be cases where it is not in the best interests of the child to subject him or
her to treatment that will cause increased suffering and produce no
commensurate benefit, giving the fullest possible weight to the child's and
mankind's desire to survive. In this context, I do not discount the grave
matters prayed in aid by the Trust. However, the law that I must apply is clear
and requires that the best interests decision be arrived at by a careful and
balanced evaluation of all of the factors that I have discussed in the foregoing
26
 paragraphs. Having undertaken that balance, in circumstances where,
whilst minimally aware, moribund and totally reliant on others, Tafida
is not in pain and medically stable; where the burden of the treatment
required to keep her in a minimally conscious state is low; where there
is a responsible body of medical opinion that considers that she can and
should be maintained on life support with a view to placing her in a
position where she can be cared for at home on ventilation by a loving
and dedicated family in the same manner in which a number of children
in a similar situation to Tafida are treated in this jurisdiction; where
there is a fully detailed and funded care plan to this end; where Tafida
can be safely transported to Italy with little or no impact on her welfare;
where in this context the continuation of life-sustaining treatment is
consistent with the religious and cultural tenets by which Tafida was
being raised; where, in the foregoing context, transfer for treatment to
Italy is the choice of her parents in the exercise of their parental
responsibility and having regard to the sanctity of Tafida's life being of
the highest importance, I am satisfied, on a fine balance, that it is in
Tafida's best interests for life sustaining treatment to continue. It follows
from this conclusion that I am also satisfied, the court having determined the
dispute regarding best interests in favour of the treatment being offered to
Tafida in Italy, there can be no justification for further interference in Tafida's
EU right to receive services pursuant to Art 56.

191. Within this context, and particularly where a child is not in pain and is
not aware of his or her parlous situation, these cases can place the objective
best interests test under some stress. Absent the fact of pain or the awareness
of suffering, the answer to the objective best interests tests must be looked
for in subjective or highly value laden ethical, moral or religious factors
extrinsic to the child, such as futility (in its non-technical sense), dignity, the
meaning of life and the principle of the sanctity of life, which factors mean
different things to different people in a diverse, multicultural, multi faith
society. Nevertheless, the gold standard against which cases of this nature are
measured and determined remains that of the child's best interests and as the
march of medical innovation continues to bring cases of this nature before
the courts the courts will be required to apply this standard to the best of their
ability. That is what I have endeavoured to do in this very sad case.” (per
MacDonald J).

The court ordered that Tafida’s parents could take to Italy for further treatment. The
hospital stated that it would not appeal the ruling. Note that here the treatment was not
experimental. The case is also highly significant for its engagement with Article 9 in
addition to its consideration of Articles 2 and 8 of the ECHR.

Tafida Raqeeb travelled to Italy arriving on October 2019. See BBC News
“Tafida Raqeeb: Brain-damaged girl arrives in Italy”
https://www.bbc.co.uk/news/uk-england-london- 50068246.

Her mother stated that she thought it was wise for her daughter to become an Italian
citizen https://www.theguardian.com/society/2019/oct/16/mother-seeks- to-make-
seriously-ill-girl- italian-citizen-after-legal-win-tafida-raqeeb

27
 Reports in January 2020 that Tafeda was out of intensive care. https://www.theguardian.com/uk-
news/2020/jan/08/british-girl-who-won-life-support-legal-battle-is-out-of-intensive-care

See further:

C. Auckland and I. Gould “Re‐evaluating ‘best interests’ in the wake of Raqeeb v Barts NHS
Foundation Trust & Anors” (2020) Modern Law Review online first 20th July 2020
https://onlinelibrary.wiley.com/doi/full/10.1111/1468-2230.12563

E. Cave, J. Brierley and D. Archand “Making Decisions for Children—Accommodating

Parental Choice in Best Interests Determinations: Barts Health NHS Trust v Raqeeb [2019]
EWHC 2530 (Fam); Raqeeb and Barts Health NHS Trust [2019] EWHC 2531 (Admin” [2020]
28(1) Medical Law Review 183.

Implications of the Re T and Raqueeb cases

1. Greater emphasis on the importance of parental autonomy

.
2. Express engagement with Article 9 of the ECHR in the case of Raqueeb

3. Are these both cases which will be distinguishable by their very particular facts?

Is a new law needed here?

There have been attempts led by Charlie Gard’s parents to attempt to introduce legislative change to
impact on the way in which such cases are resolved.

C. Dyer “Alfie Evans case: Proposed law aims to prevent conflicts between
parentsand doctors” (2018) 361 British Medical Journal published 30th April
2018

D. Wilkinson and J. Salvescue “Alfie Evans and Charlie Gard: Should the Law Change?(2018)
British Medical Journal: BMJ 2018; 361:k1891
BBC News “Charlie Gard's parents want 'Charlie's Law’, 20th June
2018-https://www.bbc.co.uk/news/health-44334306

Provisions include access to clinical ethics committees/ access to medical mediation as early
aspossible/ speedy access to medical records/ access to legal aid etc

28
See also https://www.thecharliegardfoundation.org/charlies-law/

D. Benbow “Tafida Raqeeb v. Barts NHS Foundation Trust and Others [2019]: Bolstering
theargument for mediation” (2019) 19(4) Medical Law International 298.

Child (Access to Treatment) Bill 2019 – failed to complete its progress through Parliament.
https://bills.parliament.uk/bills/2734

D.I. Benbow “An Analysis of Charlie’s Law and Alfie’s Law” (2020) 28(2) Medical Law Review
223.

*J.V.McHale 2022

29