Corte europea dei diritti dell’uomo
(Prima Sezione)
27 giugno
2017
AFFAIRE CHARLIE GARD AND OTHERS
V. UNITED KINGDOM
(Application no.
39793/17)
The European Court of Human Rights (First Section),
sitting on 27 June 2017 as a Chamber composed of:
Linos-Alexandre
Sicilianos,
President,
Kristina Pardalos,
Aleš
Pejchal,
Krzysztof Wojtyczek,
Armen
Harutyunyan,
Tim Eicke,
Jovan Ilievski, judges,
and Abel Campos, Section Registrar,
Having regard to the above application lodged on 6
June 2017,
Having regard to the interim measure indicated to
the respondent Government under Rule 39 of the Rules of Court of 9 and 13 June 2017,
Having regard to the decision to grant priority to
the above application under Rule 41 of the Rules of Court.
Having deliberated, decides as follows:
THE
FACTS
1. A list of the applicants is set out
in the Appendix.
A. The circumstances
of the case
1. The background facts
2. The facts of the case may be
summarised as follows.
3. The first applicant (“CG”) was born on 4 August 2016. His
parents are the second and third applicants. CG initially appeared to have been
born healthy. Medical professionals subsequently observed that CG was failing
to gain weight, and his breathing was becoming increasingly lethargic and
shallow. He was admitted to Great Ormond Street Hospital (“GOSH”) on 11 October
2016, where he has remained since.
4. There is no dispute that CG is suffering from a very rare and severe mitochondrial disease called
infantile onset encephalomyopathic mitochondrial DNA depletion syndrome
("MDDS"). The disease is caused by mutations in a gene called RRM2B.
The mutations cause the deterioration and death of fuel-giving mitochondrial
cells in every part of the patient’s body, depriving him of the essential
energy for living. In CG’s case, his brain, muscles and ability to
breathe are all seriously affected. He has progressive respiratory failure and
is dependent on a ventilator. He can no longer move his arms or legs and is not
consistently able to open his eyes. He is persistently encephalopathic,
meaning that there are no usual signs of normal brain activities such as
responsiveness, interaction or crying. In addition he has congenital deafness
and a severe epilepsy disorder. His heart, liver and kidneys are also affected
but not severely.
5. The parents became aware of a form of therapy (“nucleoside
treatment”) which has been used on patients with a less severe mitochondrial
condition known as TK2 mutation. This type of mutation primarily causes myopathy (muscle weakness) but does not affect the brain in
the majority of cases. There is some evidence that patients with TK2 mutation
have benefited from nucleoside treatment. The parents contacted Dr I,
Professor of Neurology at a medical centre in America. Dr I confirmed that
nucleoside treatment had not been used on either mice or humans with RRM2B
mutation, but that there was a "theoretical possibility" that the
treatment might be of benefit to CG.
6. At the start of January 2017, a plan was devised by CG’s
treating clinicians in the United Kingdom for nucleoside treatment to be
administered in the United Kingdom. As the treatment is experimental, an
application to the Ethics Committee was prepared to authorise its use and a
meeting planned for 13 January. However before a treatment plan could be
agreed, CG experienced an episode of brain seizures as a result of his epilepsy,
which started on around 9 or 10 January and continued intermittently until
27 January. On 13 January, CG’s treating clinicians
informed the parents that CG was suffering severe epileptic encephalopathy.
They concluded that nucleoside treatment would be futile and would only prolong
CG’s suffering. His case was also considered by an expert team in
Barcelona, which reached the same conclusion. The meaning of “futile” was the
subject of argument at the domestic level. The Court of Appeal concluded:
“44. In relation to the judge’s use of
the word “futile” it is argued that there is a distinction between the medical
definition of futility and the concept of futility in law .... Medicine looks
for “a real prospect of curing or at least palliating the life-threatening
disease or illness from which the patient is suffering”, whereas, for the law,
this sets the goal too high in cases where treatment “may bring some benefit to
the patient even though it has no effect on the underlying disease or
disability” .... In the present case, tragically, this is a difference without
a distinction in the light of the judge’s finding that the potential benefit of
nucleoside therapy would be “zero”. It would therefore be, as the judge held at
paragraph 90, “pointless and of no effective benefit”.
2. Judgment of the High Court of 11
April 2017, Great Ormond Street Hospital v. (1) Constance Yates, (2) Chris Gard, (3) Charles Gard (A child
by his Guardian Ad Litem) [2017] EWHC 972 (Fam)
7. In February 2017, GOSH made an
application to the High Court for an order stating that it would be lawful, and
in CG’s best interests, for artificial ventilation to be withdrawn and
palliative care provided. The application was opposed by the parents. The
question of possible nucleoside therapy was raised by the parents as the
proceedings progressed and they put information before the High Court that Dr I
was willing to treat CG. Accordingly, the order ultimately included a third
element, that it would not be in CG’s interest to undergo nucleoside treatment
(see paragraph 31).
8. Over the course of three days in
April 2017, the High Court heard evidence from the parents, CG’s guardian (see
paragraph 17) and a number of expert witnesses including Professor A, Dr B and
CG’s two nurses at GOSH, and Dr I by telephone. It received a report from the
medical expert instructed by the parents, Dr L. The Court also received 4
second opinions from world leading medical experts in paediatrics and rare
mitochondrial disorders. They were Dr C, Consultant in Paediatric Intensive
Care at St. Mary’s Hospital; Dr D, Consultant Respiratory Paediatrician at
Southampton Hospital; Dr E, Consultant and Senior Lecturer in Paediatric
Neurology at the Newcastle Upon Tyne NHS Foundation Trust, and Dr F,
Consultant Paediatric Neurologist at St. Mary’s Hospital. The judge also
visited CG in hospital.
(a) The Medical Evidence as Presented by
Great Ormond Street Hospital and Dr L
9. Dr B, Consultant
Paediatric Intensivist at GOSH, gave evidence that CG was so damaged
that there was no longer any movement (noting that there was no evidence of a
sleep/wake cycle). He said that there were no further treatments available to
CG which could improve him from his current situation and that this was the
opinion of the entire treatment team, including those from whom a second
opinion had been obtained. He stated that CG can probably experience pain, but
was unable to react to it in a meaningful way.
10. Professor A,
a leading expert with a special interest in mitochondrial diseases, gave
evidence on the prospect of successful nucleoside treatment. She noted that the treatment had never been tried on humans or even on
animals with the RRM2B mutation. She stated that even if there was an ability
to cross the blood/brain barrier, the treatment could not reverse the
structural damage already done to the CG’s brain. She said that seizures in
mitochondrial disease are a sign that death is, at most, six to nine months away.
11. Professor A added that:
“90 ... she and Dr I did not really differ on the
science and that both agree that, very sadly, it is extremely unlikely to help
Charlie. She said that, in her view, there was a cultural difference in
philosophy between treatment in the United States and in the United Kingdom.
She said that she tried to have the child at the centre of her actions and
thoughts whereas in the United States, provided there is funding, they will try
anything.”
12. Dr
L, Consultant Paediatric Neurologist, was
instructed on behalf of the parents. His report was produced on the second day
of the hearing. Dr L concluded that:
"The nature of [CG’s] condition means that he
is likely to continue to deteriorate, that he is likely to remain immobile,
that he will exhibit severe cognitive impairment, that he will remain dependent
on ventilatory support to maintain respiration, will
continue to need to be tube fed and that he will always be dependent on
mechanical ventilation to maintain life."
(b) The Medical Evidence as presented by
Dr I
13. Although he had never examined CG
himself, Dr I had full access to his medical history. After reviewing recent
EEG results, Dr I stated:
"98.[...] I can understand the opinion that he
is so severely affected by encephalopathy that any attempt at therapy would be
futile. I agree that it is very unlikely that he will improve with that therapy
[nucleoside treatment]. It is unlikely."
14. The judge summarised Dr I’s evidence
stating:
“127. Dr I who has not had the
opportunity of examining Charlie, and who operates in what has been referred to
as a slightly different culture in the United States where anything would be
tried, offers the tiniest chance of some remotely possible improvement based on
a treatment which has been administered to patients with a different condition.
I repeat that nucleoside therapy has not even been tried on a mouse model with
RRM2B. As Dr I candidly said,
“It is very difficult for me never having seen him,
being across the Atlantic and seeing bits of information. I appreciate how
unwell he is. His EEG is very severe. I think he is in the terminal stage of
his illness. I can appreciate your position. I would just like to offer what we
can. It is unlikely to work, but the alternative is that he will pass away.”
15. Asked what level of functioning could reasonably be
expected after treatment with nucleoside, he said that the main benefit would
be improvement of weakness, increased upper strength, and reduced time spent on ventilators. He
however accepted that the treatment, if administered, was unlikely to be of any
benefit to CG’s brain. He described the probability as low, but not zero. He agreed that there could be no reversal of the structural damage to
Charlie’s brain.
(c) Position of the parents
16. The parents
denied that CG’s brain function was as bad as the expert evidence made out.
They denied that CG did not have a sleep/wake cycle. They acknowledged and
accepted that the quality of life that CG had was not worth sustaining without hope of improvement.
(d) Position of CG represented by his
guardian (appointed by the High Court)
17. At the outset of the proceedings the High Court joined CG
to the proceedings and appointed a guardian to represent CG’s interests
throughout the proceedings, who in turn appointed legal representatives. The
relevant procedural rule permits joining a child where the court considers this
is in the best interests of the child. The Court must then appoint a guardian
unless it is satisfied that it is not necessary to do so to safeguard the
interests of the child. According to the relevant practice direction (see
section 3 below):
“It is the duty of a children’s guardian fairly and
competently to conduct proceedings on behalf of the child. The children’s
guardian must have no interest in the proceedings adverse to that of the child
and all steps and decisions the children’s guardian takes in the proceedings
must be taken for the benefit of the child.”
18. Throughout the domestic proceedings,
the guardian argued that it was not in CG’s best interests to travel to America
to receive purely experimental treatment with no real prospect of improving his
condition or quality of life.
(e) Decision
19. On 11 April 2017, the High Court acceded to GOSH’s
applications.
20. The High Court judge firstly outlined
the relevant legal test as applied to decisions relating to
medical treatment of children (see section 2 below). He acknowledged that
though parents with parental responsibility have the power to give consent for
their child to undergo treatment, as a matter of law, overriding control is
vested in the court exercising its independent and objective judgement in the
child’s best interests. In making that decision, the welfare of the child
is paramount. The starting point is the strong presumption of the sanctity of
life, and a course of action which will prolong life. The judge must look at
the question from the assumed point of view of the child. The term ‘best
interests’ encompasses medical, emotional, and all other welfare issues.
21. The judge observed that there was a consensus from all of the doctors
that had examined CG, including the medical expert instructed by the parents
that nucleoside treatment would be futile, that is to say pointless and of no
effective benefit.
“22...the
GOSH team believe that Charlie can probably experience pain but is unable to
react to it in a meaningful way. Their evidence was that being ventilated,
being suctioned, living as Charlie does, are all capable of causing pain.
Transporting Charlie to the USA would be problematic, but possible.”
23. The judge concluded:
“128. As the Judge whose sad duty it is
to have to make this decision, I know that this is the darkest day for
Charlie’s parents who have done everything that they possibly can for him and
my heart goes out to them as I know does the heart of every person who has
listened to this tragic case during the course of the past week or so. I can
only hope that in time they will come to accept that the only course now in
Charlie’s best interests is to let him slip away peacefully and not put him
through more pain and suffering”.
3. The Court of Appeal Decision of
23 May 2017, (1) Constance Yates, (2) Christopher Gard
– and – (1) Great Ormond Street Hospital for Children NHS Foundation Trust -
and – (2) Charles Gard (a child, by his guardian)
[2017] EWCA Civ 410
24. Before the Court of Appeal, the
applicants sought to argue that the High Court judge had erred by relying on
the ‘best interests’ test alone. They sought to make a distinction between two
types of cases relating to medical treatment of children. The first type of
case involves parents who oppose the course of treatment for which the treating
clinicians apply, and who do not have a viable alternative treatment to put
before the court. In the second type of case there is a viable alternative
treatment option put forward by the parents. The applicants submitted that
their case fell into the latter category. In these circumstances, the
applicants (relying on a recent High Court case (Re King [2014] EWHC
2964 (Fam.)) argued that a parent’s preferred treatment option should only be overridden
if it is established that the option would likely cause the child “significant
harm”. The applicants also argued that it was the hospital who had applied to
prevent the delivery of a therapy which it did not, itself, intend to provide.
This was outside its powers as a public authority, and the court had no
jurisdiction to uphold the hospital’s position.
25. The applicants relied on Article 8
of the Convention to say that applying a “best interests” test, rather than a
“significant harm” test permitted unjustified interference in their parental
rights under that Article. They also referred to Articles 2 and 5 of the
Convention, but did not develop any arguments under those Articles. CG’s
guardian and GOSH maintained their position that the course of action proposed
by the parents was not in CG’s best interests.
26. Permission to appeal was granted in
respect of the human rights grounds, but only in so far as they supplemented
the core grounds for appeal.
27. On 23 May 2017, the Court of Appeal
dismissed the appeal. It stated:
“96. If
one option is favoured by a parent, that may give it weight, or as
Lord Justice Waite put it, incline 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” Notwithstanding that that is the case, in the end it
is the judge who has to choose the best course for a child. Whereas, in the
case of Re King before Mr Justice
Baker, there really was nothing to choose as between the benefits and
detriments of two forms of radiotherapy, the court readily stood back and
allowed the parents to make their choice”.
...
“112. It
goes without saying that in many cases, all other things being equal, the views
of the parents will be determinative. Very many cases involving children with
these tragic conditions never come to court because a way forward is agreed as a
result of mutual respect between the family members and the hospital, but it is
well recognised that parents in the appalling position that these and other
parents can find themselves may lose their objectivity and be willing to “try
anything” even if, when viewed objectively, their preferred option is not in a
child’s best interest. As the authorities to which I have already made
reference underline again and again, the sole principle is that the best
interests of the child must prevail and that must apply even to cases where
parents, for the best of motives, hold on to some alternate view.”
28. It found
that the High Court was entitled to conclude that the nucleoside treatment
option would be futile, and would have no benefit. As a consequence, nucleoside
treatment was not a viable option before the court. The court therefore concluded that the factual basis for the
applicants’ submissions was undermined, and that the question of whether a
distinction existed between types of cases involving medical treatment for
children advocated by parents did not arise.
29. Nevertheless, the Court of Appeal
considered the “significant harm” test proposed by the applicants and stated
that:
“114...It
must follow from that unanimous professional and expert evidence that to move
Charlie to America and expose him to treatment over there would be likely to
expose him to continued pain, suffering and distress”.
30. The court said:
“114... it is plain that the [High Court] judge was
not invited to consider the law in the way that is now put before this court
let alone to consider the existence of “category 2” cases with the need to
establish a threshold for significant harm. I have made extensive reference to
the evidence as recorded by the judge regarding Charlie’s current state. It is
clear, in my view, that if the judge had been invited to form a conclusion on
whether Charlie was or was not suffering significant harm currently, that
finding would have been made. At paragraph 49 the judge records the evidence of
the doctors, the medical staff who have knowledge of the current state of
Charlie’s life in the hospital and each of the other experts as follows:
“In some parts of the media this has been referred
to as “pioneering treatment”. In fact, this type of treatment has not even
reached the experimental stage on mice let alone been tried on humans with this
particular strain of MDDS. It is the view of all those who have treated and
been consulted in relation to Charlie in this country and also in Barcelona
that such treatment would be futile, by which I mean would be of no effect but may well cause pain, suffering and
distress to Charlie. This is the principal issue with which I have to
grapple in this case [emphasis added]”.
...
115. The administration of nucleoside
therapy, which involves no more than the introduction of some powder into the
nutritional feed to Charlie’s body and may, at most, trigger some adverse bowel
reaction, may be relatively benign and may not itself cause significant harm.
The prospect of significant harm arises, however, in the context of such
treatment from the judge’s finding that it would be of no benefit for Charlie
and that he would need to continue with the regime of life-sustaining
treatment, which the judge concluded was not otherwise in his best interests,
so that the nucleoside therapy could be administered”.
31. The court also
concluded that the hospital had not acted outside its powers. The issue of
nucleoside treatment had been raised by the parents, not by the hospital. The
appeal court found that the High Court judge’s decision resulted from a
“child-focused, court-led evaluation of the baby’s best interests”. The fact
that the merits of the alternative treatment represented a large part of the evaluation
demonstrated that the judge had regarded the parents’ views as an important
part of the process.
32. On the basis that the human rights
grounds supported the applicant’s primary grounds, the Court of Appeal found
that they too should be dismissed.
4. The Supreme Court decision of 8
June 2017, in the Matter of Charlie Gard
33. The applicants requested permission
to appeal from the Supreme Court, who heard their application on Thursday 8
June 2017. Before the Supreme Court the applicants repeated the arguments made
before the lower courts with a particular focus on the respect for their
parental rights under Article 8, repeating the argument rejected by the
Court of Appeal that the only reason which could justify interference in their
Article 8 rights would be if there were a risk of “significant harm” to the
child.
34. GOSH and CG’s guardian underlined
that in accordance with domestic and international law, the best interests of
the child were of paramount importance. They repeated their arguments that
taking Charlie to America for experimental treatment was not in his best
interests. CG’s guardian underlined that even if the proposed “significant
harm” test were applied, the applicant’s claim would still fail because as
stated by the Court of Appeal, continuing to maintain his life and taking him
to America would be likely to expose him to continued pain, suffering and
distress.
35. The Supreme Court rejected the applicants’ request for
permission on the basis that no point of law of general, public importance had
been identified. With reference to the domestic statute; the Convention; this
Court’s case law; and the UN Convention on the rights of the child, the Supreme
Court underlined that the welfare of the child shall be the paramount consideration.
In its determination of the application on permission to appeal it concluded:
“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”.
36. The Supreme Court also reiterated the finding of the Court
of Appeal that even if the “best interests” test were replaced with a test of
“significant harm”, it is likely that Charlie would suffer significant harm if
his present suffering is prolonged without any realistic prospect of
improvement.
5. The Supreme Court decision of 19
June 2017, in the Matter of Charlie Gard
37. In light of the indication of this Court of 13 June 2017
under Rule 39, the government requested a hearing before the Supreme Court for
directions on whether the Supreme Court could direct a further stay of the
declaration of the High Court of 11 April 2017 (see paragraph 19 above). In
their judgment the Supreme Court stated:
“15. Every day since 11 April 2017 the
stays have obliged the hospital to take a course which, as is now clear beyond
doubt or challenge, is not in the best interests of Charlie. The hospital finds
itself in an acutely difficult ethical dilemma: although the stays have made it
lawful to continue to provide him with AVNH, it considers it professionally
wrong for it to have continued for over two months to act otherwise than in his
best interests.
...
“17. We three members of this court find
ourselves in a situation which, so far as we can recall, we have never
previously experienced. By granting a stay, even of short duration, we would in
some sense be complicit in directing a course of action which is contrary to
Charlie’s best interests”.
38. The court also recalled the
importance of protecting the applicants’ right to petition this Court and
accordingly, granted a further stay until midnight on 10/11 July 2017.
39. In closing the
Supreme Court noted:
“22. By way of postscript, the court was
today informed that the proposed application to the ECtHR
will be made not only by the parents but also by or on behalf of Charlie. It is
not, of course, for this court to comment on how the ECtHR
should address the status of an application made by parents on behalf of a
child for a declaration that his rights have been violated by decisions found
to have been made in his best interests. But, as the ECtHR
well knows, our procedures have required that Charlie’s participation in the
domestic proceedings should at all times have been in the hands of an
independent, professional guardian”.
B. Relevant
domestic law and practice
1. The Children Act 1989
40. Subsection 1 is titled “Welfare of
the child”. It provides:
(1) When a court determines any question
with respect to—
(a) the upbringing of a child; ...
the child’s welfare shall be the court’s paramount
consideration.
(2) In any proceedings in which any
question with respect to the upbringing of a child arises, the court shall have
regard to the general principle that any delay in determining the question is
likely to prejudice the welfare of the child.
41. The Act also addresses “parental
responsibility”. It provides that where a child’s father and mother were
married to each other at the time of his birth, they shall each have parental
responsibility for the child. Each of the parents, or the mother if she is
unmarried, has parental responsibility over the child. Section 3 states. In the
Act "parental responsibility" means:
“all the rights, duties, powers, responsibilities
and authority which by law a parent of a child has in relation to the child and
his property."
42. Section 8 (1) grants the courts the
powers to make orders with respect to children in certain circumstances, known
as “specific issue” orders.
2. Domestic case law
(a) Re A (Children) (Conjoined Twins:
Surgical Separation) [2001] 2 WLR at p.480.
43. The court stated that a child’s parents
having parental responsibility have the power to give consent for their child
to undergo treatment, but overriding control is vested in the court exercising
its independent and objective judgment in the child’s best interests.
(b) An NHS Trust v. MB (A Child
represented by CAFCASS as Guardian ad Litem)
[2006] 2 FLR 319.
44. The court said as follows:
"(i) As a
dispute has arisen between the treating doctors and the parents, and one, and
now both, parties have asked the court to make a decision, it is the role and
duty of the court to do so and to exercise its own independent and objective
judgment.
(ii) The right and power of the court to
do so only arises because the patient, in this case because he is a child,
lacks the capacity to make a decision for himself.
(iii) I am not deciding what decision I
might make for myself if I was, hypothetically, in the situation of the
patient; nor for a child of my own if in that situation; nor whether the
respective decisions of the doctors on the one hand or the parents on the other
are reasonable decisions.
(iv) The matter must be decided by the
application of an objective approach or test.
(v) That test is the best interests of
the patient. Best interests are used in the widest sense and include every kind
of consideration capable of impacting on the decision. These include,
non-exhaustively, medical, emotional, sensory (pleasure, pain and suffering)
and instinctive (the human instinct to survive) considerations.
(vi) It is impossible to weigh such
considerations mathematically, but the court must do the best it can to balance
all the conflicting considerations in a particular case and see where the final
balance of the best interests lies.
(vii) Considerable weight (Lord
Donaldson of Lymington MR referred to ‘a very strong
presumption’) must be attached to the prolongation of life because the
individual human instinct and desire to survive is strong and must be presumed
to be strong in the patient. But it is not absolute, nor necessarily decisive;
and may be outweighed if the pleasures and the quality of life are sufficiently
small and the pain and suffering or other burdens of living are sufficiently
great.
(viii) These considerations remain well
expressed in the words as relatively long ago now as 1991 of Lord Donaldson of Lymington in Re J (A minor) (wardship:
medical treatment) [1991] Fam 33 at page 46
where he said:
‘There is without doubt a very strong presumption
in favour of a course of action which will prolong life, but ... it is not irrebuttable ... Account has to be taken of the pain and
suffering and quality of life which the child will experience if life is
prolonged. Account has also to be taken of the pain and suffering involved in
the proposed treatment... We know that the instinct and desire for survival is
very strong. We all believe in and assert the sanctity of human life .... Even
very severely handicapped people find a quality of life rewarding which to the unhandicapped may seem manifestly intolerable. People have
an amazing adaptability. But in the end there will be cases in which the answer
must be that it is not in the interests of the child to subject it to treatment
which will cause it increased suffering and produce no commensurate benefit,
giving the fullest possible weight to the child’s, and mankind’s desire to
survive.’
(ix) All these cases are very fact
specific, i.e. they depend entirely on the facts of the individual case.
(x) The views and opinions of both the
doctors and the parents must be carefully considered. Where, as in this case,
the parents spend a great deal of time with their child, their views may have
particular value because they know the patient and how he reacts so well;
although the court needs to be mindful that the views of any parents may, very
understandably, be coloured by their own emotion or sentiment. It is important
to stress that the reference is to the views and opinions of the parents. Their
own wishes, however understandable in human terms, are wholly irrelevant to
consideration of the objective best interests of the child save to the extent
in any given case that they may illuminate the quality and value to the child
of the child/parent relationship."
(c) An
NHS Trust v. MB (A Child represented by CAFCASS as Guardian ad Litem) [2006] 2
FLR 319.
45. In this case, the Supreme Court stated as follows:
"[22] Hence the focus is on whether
it is in the patient’s best interests to give the treatment, rather than on
whether it is in his best interests to withhold or withdraw it. If the treatment
is not in his best interests, the court will not be able to give its consent on
his behalf and it will follow that it will be lawful to withhold or withdraw
it. Indeed, it will follow that it will not be lawful to give it.
[39] ...in considering the best interests of this
particular patient at this particular time, decision-makers must look at his
welfare in the widest sense, not just medical but social and psychological;
they must consider the nature of the medical treatment in question, what it involves
and its prospects of success; they must consider what the outcome of that
treatment for the patient is likely to be; they must try and put themselves in
the place of the individual patient and ask what his attitude to the treatment
is or would be likely to be; and they must consult others who are looking after
him or interested in his welfare, in particular for their view of what his
attitude would be."
3. Family
Procedure Rules 2010
46. Rule 16.2 sets out when a child can be
joined as a party in family proceedings, stating:
“(1) The
court may make a child a party to proceedings if it considers it is in the best
interests of the child to do so”.
47. If the court decides to join a child
as a party in family proceedings then a guardian must be appointed to represent
them, unless the court is satisfied that it is not necessary to do so to
safeguard the interests of the child.
48. The Family Court Practice Direction – Representation of
Children, Part 4, Section 2, sets out the duty of the guardian as follows:
“It is the duty of a children’s guardian fairly and
competently to conduct proceedings on behalf of the child. The children’s
guardian must have no interest in the proceedings adverse to that of the child
and all steps and decisions the children’s guardian takes in the proceedings
must be taken for the benefit of the child”.
49. The Court of Appeal considered the
role of the guardian in R & Ors
v. Cafcass [2012] EWCA Civ
853, commenting:
“23. No detailed analysis of this
statutory regime is necessary. The provisions speak for themselves. All we need
say is that the children’s guardian is on any view pivotal to the whole scheme.
The guardian is both the voice of the child and the eyes and ears of the court.
As any judge who has ever sat in care cases will be all too aware, the court is
at every stage of the process critically dependent upon the guardian. In a
jurisdiction where the State is seeking to intervene – often very drastically –
in family life, the legislature has appropriately recognised that determination
of the child’s best interests cannot be guaranteed if the proceedings involve
no more than an adversarial dispute between the local authority and the
parents. Parliament has recognised that in this very delicate and difficult
area the proper protection and furthering of the child’s best interests require
the child to be represented both by his own solicitor and by a guardian, each
bringing to bear their necessary and distinctive professional expertise.”
4. Access to experimental
medication
50. All clinical trials to establish whether experimental
medical treatment is appropriate and safe for human use need to be approved by
the National Health Service Research Ethics Committee. The statutory framework
is contained in the Medicines for Human Use (Clinical Trials Regulations) 2004,
which transposes the European Clinical Trials Directive (EC/2001/20) into
domestic law. The General Medical Council, which is the standard setting body
for doctors in the United Kingdom, has also published guidelines on “Good
practice in research covering clinical trials”.
C. International
Law and Practice
1. United Nations
51. Article 3 (1) of the United Nations Convention on the
Rights of the Child states:
“In all
actions concerning children, whether undertaken by public or private social
welfare institutions, courts of law, administrative authorities or legislative
bodies, the best interests of the child shall be a primary consideration”.
2. Council of Europe
52. The Council of Europe’s Convention for the Protection of
Human Rights and Dignity of the Human Being with regard to the Application of
Biology and Medicine: Convention on Human Rights and Biomedicine (opened to
signature at Oviedo on 4 April 1997), contains the following principles
regarding consent:
“Chapter II – Consent
Article 6 – Protection of persons not able to
consent
1. Subject to Articles 17 and 20 below,
an intervention may only be carried out on a person who does not have the
capacity to consent, for his or her direct benefit.
2. Where, according to law, a minor does
not have the capacity to consent to an intervention, the intervention may only
be carried out with the authorisation of his or her representative or an
authority or a person or body provided for by law.
The opinion of the minor shall be taken into
consideration as an increasingly determining factor in proportion to his or her
age and degree of maturity.
3. Where, according to law, an adult does
not have the capacity to consent to an intervention because of a mental
disability, a disease or for similar reasons, the intervention may only be
carried out with the authorisation of his or her representative or an authority
or a person or body provided for by law.
The individual concerned shall as far as possible
take part in the authorisation procedure.
4. The representative, the authority,
the person or the body mentioned in paragraphs 2 and 3 above shall be
given, under the same conditions, the information referred to in Article 5.
5. The authorisation referred to in
paragraphs 2 and 3 above may be withdrawn at any time in the best interests of
the person concerned.
53. According to the Explanatory report
to the Convention, Article 6 is intended to be in conformity with the
provisions in the United Nations Convention on the Rights of the Child (see
paragraph 51). The Guide on the decision-making process regarding medical
treatment in end-of-life situations was drawn up by the Committee on Bioethics
of the Council of Europe in the course of its work on patients’ rights and with
the intention of facilitating the implementation of the principles enshrined in
the Oviedo Convention.
3. European Union
54. The European Union’s Charter of
Fundamental Rights, which became legally binding with the entry into force of
the Lisbon Treaty on 1 December 2009, contains the following Article:
Article 24 – The rights of the child
“1. Children shall have the right to such
protection and care as is necessary for their well-being. They may express
their views freely. Such views shall be taken into consideration on matters
which concern them in accordance with their age and maturity.
2. In all actions relating to children,
whether taken by public authorities or private institutions, the child’s best
interests must be a primary consideration.
3. Every child shall have the right to
maintain on a regular basis a personal relationship and direct contact with
both his, or her parents, unless that is contrary to his or her interests.”
COMPLAINTS
55. The second and third applicants
complained on their own behalf and on behalf of the first applicant under
Articles 2 and 5 of the Convention. They argued that the hospital has blocked
life-sustaining treatment to CG in violation of the positive obligation under
Article 2. In respect of Article 5, they argued that CG is deprived of his
liberty within the meaning of that article by the order of 11 April 2017.
56. The second and third applicants
complained on their own behalf under Articles 6 and 8 of the Convention. Under
Article 6 they complained that the Court of Appeal concluded that their
intended parental decisions would cause the first applicant “significant harm”
without hearing witness evidence on this point. Under Article 8 they argued
that the declaration by the High Court of 11 April 2017 and subsequent domestic
court decisions amount to a disproportionate interference in their parental
rights because the domestic courts had taken their decisions in the “best
interests” of the child. Whereas they should have asked whether there is a
likelihood that the child “is suffering, or likely to suffer, significant
harm”. As a result, the interference in their parental rights under Article 8
is disproportionate and cannot be justified.
THE LAW
I. STANDING TO ACT IN THE NAME AND ON BEHALF OF CG
57. Article 34 of the Convention
provides as follows:
“The Court may receive applications from any person,
non-governmental organisation or group of individuals claiming to be the victim
of a violation by one of the High Contracting Parties of the rights set forth
in the Convention or the Protocols thereto. The High Contracting Parties
undertake not to hinder in any way the effective exercise of this right.”
A. Articles
2 and 5 of the Convention
58. In respect of Articles 2 and 5, the
second and third Applicants have argued on their own behalf and that of CG that
the hospital has blocked life-sustaining treatment to CG and the result is that
he is unlawfully deprived of his liberty. The second and third applicants did
not give any reasons why the Court should consider that they have standing to
make those complaints on CG’s behalf.
B. The
Court’s assessment
1. The relevant principles
59. In respect of Article 2, the
relevant principles are set out in Lambert
and Others v. France [GC], no. 46043/14, §§ 89-95, ECHR 2015 (extracts). In
order to rely on Article 34 of the Convention, an applicant must be able to
claim to be a victim of a violation of the Convention. An exception is made to
this principle where the alleged violation or violations of the Convention are
closely linked to a death or disappearance in circumstances allegedly engaging
the responsibility of the State. In such cases the Court has recognised the
standing of the victim’s next-of-kin to submit an application (see Lambert and Others, cited above, §§
89-90).
60. Amongst the authorities cited in
that case, the Court notes that under Article 8 of the Convention, it has
also accepted on several occasions that parents who did not have parental
rights could apply to it on behalf of their minor children (see Lambert and Others, cited above, § 94,
with further references). The key criterion for the Court in these cases was
the risk that some of the children’s interests might not be brought to its
attention and that they would be denied effective protection of their
Convention rights.
61. In respect of Article 5, the Court
has regarded this right as one which is non-transferable (see Tomaszewscy v. Poland, no. 8933/05, § 77, 15 April 2014). However, in certain cases
concerning Articles 5, 6 and 8 of the Convention, the Court has recognised that
those close to the victim can be regarded as having standing due to a
legitimate material interest and a moral interest, on behalf of themselves and
of the family (see Nolkenbockhoff v. Germany, no 10300/83, § 33, 25 August 1987 § 33).
Where there was an absence of close family ties, the Court has considered this
one reason why standing should not be afforded to those who are not direct
victims (see Sanles Sanles v. Spain
(dec.), no. 48335/99, ECHR 2000‑XI).
62. Overall, a review of the cases in which
the Convention institutions have accepted that a third party may, in
exceptional circumstances, act in the name and on behalf of a vulnerable person
reveals the following two main criteria: the risk that the direct victim will
be deprived of effective protection of his or her rights, and the absence of a
conflict of interests between the victim and the applicant (see Lambert and Others, § 102).
2. Application to the present case
63. Applying those two criteria set out
above to the present case, the Court must consider whether concluding the
second and third applicants do not have standing to complain on CG’s behalf
would deprive CG of effective protection of his rights. In the present case,
the Court finds the application of the criterion is more complex than that in Lambert and Others, (cited above)
because the applicant is a minor, who has never been able to express his views.
64. The first criterion is whether there
is a risk that CG as the direct victim, would be deprived of effective
protection his rights if the present application could not go ahead on his
behalf.
65. In this case that risk has been
minimised where CG is represented by an independent, professional, court
appointed guardian precisely to ensure that his own voice can be heard. That
guardian has been active in the legal proceedings throughout the domestic
procedures and it would be possible for the guardian to represent CG in an
application to the Court.
66. The Court therefore concludes that
based on the procedural possibility for CG to be represented, and the fact that
this procedural possibility has functioned effectively in practice, the risk of
a failure to protect CG’s rights has been reduced as far as possible, in the
circumstances.
67. On the second criterion, the
question is whether there was a conflict of interest between CG and the second
and third applicants. The existence of such a conflict would obviously raise
doubts over whether the second and third applicants could make an application
on CG’s behalf. In this respect, the Court takes into account the unambiguous
and repeated findings of the domestic courts that what the parents sought for
CG was not in his best interests (see paragraph 37 above). Therefore, even
though CG has never been able to express his views, the Court considers that
there is a evident conflict of interest between the applicants.
68. Therefore, it could be argued that
the second and third applicants do not have standing to raise a complaint under
Article 2 of the Convention in the name and on behalf of CG. Indeed, this point
was underlined by the Supreme Court in its judgment of 19 June 2017 (see
paragraph 39 above).
69. The Court also recalls that applying
those criteria in Lambert and Others (cited
above § 106) it found that the parent applicants did not have standing to raise
the complaints on the part of Vincent Lambert and concluded their complaint was
incompatible ratione personae with the provisions of the
Convention. However, looking at the situation as a whole, the Court considers
that it is somewhat different to that in Lambert
and Others (cited above), in light of the fact that CG is a minor, who has
never been able to express his views or live an independent life. The second
and third applicants’ status as parents is therefore arguably to be accorded
greater weight in the present case, than in that of Lambert and Others, where Vincent Lambert had lived an adult life,
separately from his parents and clearly expressed his views. Such an approach
would accord with that set out in Article 6.2 of the Oviedo convention (see
paragraph 52).
70. However, the Court does not see a
need to come to a final conclusion on this point because as in Lambert and Others (see § 112) the Court
will examine all the substantive issues arising in the present case under
Articles 2 and 5 of the Convention, given that they were raised by the
applicants on their own behalf.
II. EXHAUSTION OF DOMESTIC REMEDIES
A. The
relevant principles
71. The rule of exhaustion of domestic
remedies in Article 35 § 1 which provides that the Court may only deal
with the matter after all domestic remedies have been exhausted, reflects the
fundamentally subsidiary role of the Convention mechanism. It normally requires
that the complaints intended to be made at international level should have been
aired before the appropriate domestic courts, at least in substance, in
compliance with the formal requirements and time‑limits
laid down in domestic law.
72. The object of the rule is to allow
the national authorities to address the allegation of a violation of a
Convention right and, where appropriate, to afford redress before that
allegation is submitted to the Court. If the complaint presented before the
Court has not been put, either explicitly or in substance, to the national
courts when it could have been raised, the national legal order has been denied
the opportunity which the rule on exhaustion of domestic remedies is intended
to give it to address the Convention issue. It is not sufficient that the
applicant may have exercised another remedy which could have overturned the
impugned measure on other grounds not connected with the complaint of a
violation of a Convention right. It is the Convention complaint which must have
been aired at national level for there to have been exhaustion of “effective
remedies”. It would be contrary to the subsidiary character of the Convention
machinery if an applicant, ignoring a possible Convention argument, could rely
on some other ground before the national authorities for challenging an
impugned measure, but then lodge an application before the Court on the basis
of the Convention argument (see, among
many other authorities, Vučković and Others v. Serbia (preliminary
objection) [GC], nos. 17153/11 and 29 others, §§ 69-77, 25 March 2014 Peacock v the United Kingdom no.
52335/12 (dec.) 5 January 2016 § 32).
B. Application
to the present case
Articles 2, 5 and 6
73. The Court notes that in their application the applicants
have highlighted that the domestic courts have not given consideration to the
arguments raised under Articles 2 and 5 of the Convention. Given the meticulous
and careful nature of the judgments of the domestic courts and their flexible
approach to procedure in this case, the Court considers that the fact they did
not address the Convention arguments does not indicate any arbitrariness in
those judgments but rather results from the fact that those arguments were not
made in any detail until the final stages in the proceedings. This conclusion
is supported by a review of the content of the applicants’ pleadings before the
domestic courts. Concerning the arguments made under Article 6 about the
fairness of the proceedings before the Court of Appeal, the Court notes that
these were raised in brief by the applicants before the Supreme Court and
expressly coupled with their complaints under Articles 5 and 8.
74. Therefore, the Court considers that
a question is raised over whether the applicants have clearly shown that they
provided the authorities with the opportunity which is in principle intended to
be afforded to a Contracting State by Article 35 § 1 of the Convention, namely
that of addressing, and thereby preventing or putting right, the particular
Convention violation alleged against it, in line with the rule of exhaustion of
domestic remedies.
75. However, it does not need to come to
a final conclusion on the point because the arguments are manifestly
ill-founded, for the reasons set out below.
III. ALLEGED VIOLATION OF ARTICLE 2 OF THE CONVENTION
76. Article 2 of the Convention provides
as follows:
“1. Everyone’s right to life shall be
protected by law. No one shall be deprived of his life intentionally ....”
The relevant principles
1. Access to experimental treatment
for terminally ill patients
77. Concerning access to experimental treatment, or treatment
which is not usually authorised, the Court has previously considered that the
positive obligations under Article 2 may include the duty to put in place an
appropriate legal framework, for instance regulations compelling hospitals to
adopt appropriate measures for the protection of their patients’ lives (see Hristozov and Others v. Bulgaria, § 108).
This caused the Court to note in relation to its finding of no violation of
Article 2 in that case, where the applicants sought experimental cancer
treatment at a private clinic in Germany, that Bulgaria had in place a
regulatory system adopted in line with the requirements the relevant European
Directives governing access to unauthorised medicinal products in cases where
conventional forms of medical treatment appeared insufficient.
78. Overall the Court concluded that Article 2 of the
Convention cannot be interpreted as requiring access to unauthorised medicinal
products for the terminally ill to be regulated in a particular way (see Hristozov and Others, cited above, § 108).
2. Withdrawal of life-sustaining
treatment
79. As to the question of the withdrawal
of life‑sustaining treatment, the Court has
examined this question in detail in its landmark Grand Chamber case Lambert and Others (cited above) from
the standpoint of the State’s positive obligations (see § 124).
80. In addressing the question of the
administering or withdrawal of medical treatment in that and previous cases,
the Court has taken into account the following elements:
- the existence in domestic law and practice of a
regulatory framework compatible with the requirements of Article 2;
- whether account had been taken of the applicant’s
previously expressed wishes and those of the persons close to him, as well as
the opinions of other medical personnel;
- the possibility to approach the courts in the
event of doubts as to the best decision to take in the patient’s interests (Lambert and Others, cited above, § 143).
81. As to the first of those three elements, the Court recalls
its conclusion in its admissibility decision in Glass v. the United Kingdom, no. 61827/00, (dec.), 18 March
2003 that:
“Having regard to the detailed rules and standards
laid down in the domestic law and practice of the respondent State in the area
under consideration, it cannot be maintained that the relevant regulatory
framework discloses any shortcomings which can lay the basis of an arguable
claim of a breach of the domestic authorities’ obligation to protect the first
applicant’s right to life.”
82. Accordingly, it dismissed the
Article 2 complaint in that case as manifestly ill-founded.
83. The Court notes that no consensus
exists among the Council of Europe member States in favour of permitting the
withdrawal of artificial life-sustaining treatment, although the majority of
States appear to allow it. While the detailed arrangements governing the
withdrawal of treatment vary from one country to another, there is nevertheless
consensus as to the paramount importance of the patient’s wishes in the
decision-making process, however those wishes are expressed (see Lambert and Others, cited above § 147).
84. Accordingly, the Court considers that
in this sphere concerning the end of life, as in that concerning the beginning
of life, States must be afforded a margin of appreciation, not just as to
whether or not to permit the withdrawal of artificial life‑sustaining treatment and the detailed arrangements
governing such withdrawal, but also as regards the means of striking a balance
between the protection of patients’ right to life and the protection of their
right to respect for their private life and their personal autonomy (see,
mutatis mutandis, A, B and C v. Ireland [GC],
no. 25579/05, § 237, ECHR 2010).
However, this margin of appreciation is not unlimited (ibid., § 238) and the Court reserves the power to review whether or
not the State has complied with its obligations under Article 2 (Lambert and Others, cited above, § 148).
3. Application to the present case
85. The applicants complain that through
the domestic legal proceedings, the hospital has blocked access to
life-sustaining treatment for CG. This is a different argument to that advanced
before the domestic courts, which concerned the withdrawal of life-sustaining
treatment. The Court will therefore examine this argument in light of the
general principles in its case law concerning access to experimental medication
for terminally ill patients. In this respect it notes that it is not the
subject of dispute between the parties that the treatment the second and third
applicants seek for the first applicant is experimental, having never been
tested on humans or animals (see paragraph 5), and any prospect of it having an
effect is purely theoretical.
86. In relation to this argument, the
Court recalls that in Hristozov and Others (cited above) it found no
violation of Article 2 because the state had put in place a regulatory
framework governing access to experimental medication. The applicants have not
sought to argue in this case that such a framework is missing. However, the
Court notes from the domestic proceedings, for example the need for permission
from an Ethics Committee in order to access the nucleoside treatment (see
paragraphs 6 and 50 above) that such a framework is in place in the United
Kingdom. In addition it notes that like in Hristozov and Others (cited above), that regulatory framework is derived
from the relevant European Directives.
87. As a regulatory framework is in
place, this condition is fulfilled and the Court therefore recalls its
conclusion in Hristozov and Others (cited above), that Article 2 of the Convention
cannot be interpreted as requiring access to unauthorised medicinal products
for the terminally ill to be regulated in any particular way. Accordingly, it
considers that this aspect of the complaint is manifestly ill-founded.
88. As said, the applicants have not
made an argument under Article 2 concerning the withdrawal of
life-sustaining treatment. Nonetheless, the Court considers that in the
circumstances of the case, and in light of the domestic judgments which turned
on these arguments, that it is also appropriate to analyse the applicants’
complaint from this perspective.
89. In this context, the first of the three elements identified
in the general principles set out above (see paragraph 81) is the existence in
domestic law and practice of a regulatory framework compatible with the requirements
of Article 2. In Glass ((dec.),
cited above), the Court found the Article 2 complaint inadmissible because
the framework in place was appropriate (see paragraph 81 above). Moreover, in
its later judgment in that case it concluded that it did not consider that the
regulatory framework in place in the United Kingdom is in any way inconsistent
with the standards laid down in the Council of Europe’s Convention on Human
Rights and Biomedicine in the area of consent (see Glass, cited above, § 75).
Given that the applicants have not raised arguments on this point in their
present application, or before the domestic courts, the Court sees no reason to
change its previous conclusion. It therefore considers the first element to be
satisfied.
90. The second element is whether
account had been taken of CG’s previously expressed wishes and those of the
persons close to him, as well as the opinions of other medical personnel. The
applicants have not complained under this head, that their wishes were not taken
account of in this context, although the Court considers that there is some
overlap with the complaint made by the second and third applicants under
Article 8 that their wishes as parents were not respected.
91. Examining the question from the
perspective of Article 2, the Court recalls that neither Article 2 nor its
case-law can be interpreted as imposing any requirements as to the procedure to
be followed with a view to securing a possible agreement (see Lambert and Others, cited above,
§ 162).
92. It notes that whilst CG could not express his own wishes,
the domestic courts ensured that his wishes were expressed though his guardian,
an independent professional appointed expressly by the domestic courts for that
purpose (see paragraph 48).
93. Moreover, the opinions of all
medical personnel involved were examined in detail. These included the views of
CG’s treating specialist who enjoyed an international reputation in the field,
and her supporting clinical team including paediatric doctors and nurses. Opinions
were also sought from a clinical team at a specialised hospital in another
European country. For the purposes of the domestic proceedings the applicants
were invited to privately instruct their own medical expert, which they did
(see paragraph 12) and the domestic courts engaged in detail with the views of
that expert.
94. The High Court judge who made the
first instance decision met with all the parties and medical professionals
involved and visited CG in hospital. The Court of Appeal also heard from the
doctor in America who was willing to treat the child who was also invited to
discuss his professional views with CG’s doctors in the United Kingdom, with a
view to seeing whether they could narrow any of the issues between them.
Finally, the parents were fully involved and represented through all the
decisions made concerning CG and significant weight was given to their views.
95. This second element is therefore
satisfied.
96. The third element is the possibility to approach the courts
in the event of doubts as to the best decision to take in the patient’s
interests. It is evident from the domestic proceedings that there was not only
the possibility to approach the courts in the event of doubt but in fact, a
duty to do so (see paragraphs 39 to 45 above). The Court also recalls that in
its judgment in Glass (cited above),
this Court criticised the treating hospital for failing to approach the courts
in similar circumstances. The facts of the present case are wholly different,
GOSH quite properly applied to the High Court under the relevant statute and
the inherent jurisdiction of that court to obtain a legal decision as to the
appropriate way forward.
97. Accordingly, the third element is satisfied.
98. Therefore, in light of the above,
and in view of the margin of appreciation left to the authorities in the
present case, the Court concludes that this complaint is manifestly
ill-founded.
IV. ALLEGED VIOLATION OF ARTICLE 5 OF THE CONVENTION
99. The applicants have not specified
under which of the categories under Article 5 they wish to raise their
arguments concerning deprivation of liberty, making reference only to the
general principles. Moreover, the applicants did not detail their arguments on
this point at the domestic level with reference to the Convention case law (see
paragraph 73 above). Nor, do there appear to be previous examples within
the Court’s case law which might bear comparison with the arguments as set out
in the present case. Although, the Court notes that in the case of Nielsen v. Denmark (no. 10929/84, Court (Plenary), 28 November 1988 (§ 72), it
considered that hospital treatment of a minor was not in violation of Article
5, stating that the conditions in which the applicant stayed thus did not, in
principle, differ from those obtaining in many hospital wards where children
with physical disorders are treated.
100. In light of this lack of clarity,
the Court does not consider that it would be appropriate to come to any
definitive conclusion on the application of Article 5 in this context and in
any event, there is no need for it to do so, as the point is manifestly
ill-founded for the reasons set out below.
101. Insofar as they have specified
their argument, the applicants have contended that the case of H.L. v. the United Kingdom,
no. 45508/99, ECHR 2004‑IX applies to the circumstances of the case.
That case concerned the detention of the applicant under 5 § 1 (e) as a person
of unsound mind. The Court found violations of Articles 5 § 1 and 5 § 4 of the
Convention due to the absence of procedural safeguards (see § 124); and the
lack of guarantees of the right of an individual deprived of his liberty to
have the lawfulness of that detention reviewed by a court (§ 142),
respectively.
102. As to the absence of procedural
safeguards concerning detention, the Court considers that on the facts of the
case, this element is linked to availability of a domestic legal framework and
the possibility to apply to the domestic courts, which it has already
considered in the context of Article 2 (see paragraphs 89 to 97 above).
Accordingly, it cannot see that the applicants’ complaint under this article
adds anything further to their claim from a Convention perspective.
103. Accordingly, the Court considers
that this aspect of the complaint is manifestly ill-founded.
V. ALLEGED VIOLATION OF ARTICLES 6 AND 8 OF THE CONVENTION
104. The Court recalls that it is the
master of the characterisation to be given in law to the facts of a case (see Söderman v. Sweden
[GC], no. 5786/08, § 57, ECHR
2013). In the present case, it considers that the
applicants’ complaint under Article 6 about the manner in which the domestic
courts made their decisions, concerns exclusively the alleged arbitrary
interference in their private and family life. Indeed, it notes that it was
argued as a supplemental aspect of the applicants’ Article 8 complaint (see
paragraph 73). The complaint is therefore to be examined under Article 8
of the Convention alone, which provides
as follows:
“1. Everyone has the right to respect
for his private and family life, ...
2. There shall be no interference by a
public authority with the exercise of this right except such as is in
accordance with the law and is necessary in a democratic society in the
interests of national security, public safety or the economic well-being of the
country, for the prevention of disorder or crime, for the protection of health
or morals, or for the protection of the rights and freedoms of others.”
A. The
relevant principles
105. As to the scope of Article 8 in this context, the Court has
previously considered that a decision to impose treatment on a child contrary
to the objections of the parent gave rise to an interference with the child’s
right to respect for his private life, and in particular his right to physical
integrity (see M.A.K. and R.K. v. the
United Kingdom, nos. 45901/05 and 40146/06, § 75, 23 March 2010; and Glass, cited above, §§ 70‑72).
106. On the question of state
interference where there is a conflict between a parent’s desire concerning
medical care for their child and the opinion of medical professionals treating
the child, the Court has found that it is appropriate for the medical
professionals involved to bring such conflicts before a court for resolution (see
Glass, cited above, § 83).
107. However, as acknowledged by the domestic courts, the facts
of the present case are exceptional and the Court does not have examples in its
case law which address the approach to be taken in resolving such conflicts.
Nonetheless, it has on many occasions considered the manner in which domestic
authorities intervene when families are in conflict, often in situations
relating to care and custody arrangements. In such cases the Court has
frequently recalled that the decisive issue is whether the fair balance that
must exist between the competing interests at stake – those of the child, of
the two parents, and of public order – has been struck, within the margin of
appreciation afforded to States in such matters, taking into account, however,
that the best interests of the child must be of primary consideration (see X v. Latvia [GC], no. 27853/09, § 95, ECHR 2013; Paradiso and Campanelli v. Italy
[GC], no. 25358/12, § 208, ECHR 2017; Dubská and Krejzová v. the Czech Republic [GC], nos. 28859/11 and
28473/12, § 74, ECHR 2016; Mandet v. France,
no. 30955/12, §§ 53-55, 14 January 2016; Korneykova and Korneykov v. Ukraine, no. 56660/12, § 129-130, 24 March 2016; N.Ts. and Others v. Georgia, no. 71776/12, §§ 81-83, 2 February
2016).
108. The Court has also reiterated that
there is a broad consensus – including in international law – in support of the
idea that in all decisions concerning children, their best interests must be
paramount (see X v. Latvia, cited
above, § 96 with further references).
B. Application
to the present case
109. The Court notes at the outset that
when it previously considered similar issues in the case of Glass, it considered that it was only
asked to examine the issues raised from the standpoint of the first applicant’s
(the child’s) right to respect for his physical integrity, having regard, of
course, to the second applicant’s role as his mother and legal proxy (§ 72). In
the present case, the second and third applicants complain only on their own
behalf in respect of the interference with their rights under Article 8.
Accordingly, it will conduct its analysis in light of the alleged interference
with the second and third applicants and in light of its case law cited above
relating to their “family ties” with the first applicant.
110. In light of the case law set out
above (see paragraph 105), it considers there has been an interference in the
Article 8 rights of the applicants. Any such interference constitutes a
violation of this Article unless it is “in accordance with the law”, pursues an
aim or aims that are legitimate under Article 8 § 2 and can be regarded as
“necessary in a democratic society”.
1. “In accordance with the law”
111. The applicants have not complained
as such about a failure to apply the legal framework in place. In respect of
that legal framework, the Court recalls the conclusion in its judgment in Glass, cited above, § 75:
“Firstly, the regulatory
framework in the respondent State is firmly predicated on the duty to preserve
the life of a patient, save in exceptional circumstances. Secondly, that same
framework prioritises the requirement of parental consent and, save in
emergency situations, requires doctors to seek the intervention of the courts
in the event of parental objection. It would add that it does not consider that
the regulatory framework in place in the United Kingdom is in any way
inconsistent with the standards laid down in the Council of Europe’s Convention
on Human Rights and Biomedicine in the area of consent; nor does it accept the
view that the many sources from which the rules, regulations and standards are
derived only contribute to unpredictability and an excess of discretion in this
area at the level of application”.
112. No reasons have been advanced to
challenge the Court’s conclusions. Therefore, the Court considers that the
interference was in accordance with the law.
2. “Legitimate aim”
113. The Court also finds that the
interference was aimed at protecting the “health or morals” and the “rights and
freedoms” of a minor – the first applicant – and thus pursued aims that are
legitimate under Article 8 § 2.
3. “Necessary in a democratic
society”
114. The second and third applicants
argued that the interference with their parental rights based on the “best
interests” test of the child was unnecessary. According to them, such an
interference could only be justified where there was a risk of “significant
harm” to the child. They have also argued that it was not appropriate for the
question of CG’s treatment to be taken by the courts and that this amounted to
an unjustifiable interference.
115. Dealing with the latter point
first, the Court recalls that it found a violation of Article 8 in the
case of Glass (cited above), because
the hospital concerned did not go before the domestic courts to obtain
authorisation to treat the applicant’s child, stating that (§ 83):
“...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”
116. It also notes that in this context
the possibility to access court supervision is the third element identified in Lambert and Others (cited above) and already
examined in the context of this case (see paragraph 96).
117. It is therefore clear that it was
appropriate for the treating hospital to turn to the courts in the event of
conflict.
118. In respect of the applicants’
argument that the appropriate test was not one of the child’s “best interests”,
but one of a risk of “significant harm” to the child, the Court recalls that
there is a broad consensus – including in international law – in support of the
idea that in all decisions concerning children, their best interests must be
paramount. But, the facts of the present case are exceptional (see paragraph
107) and there is therefore a lack of guidance in the Court’s case law on this
point.
119. In
any event, the Court does not consider this question to be decisive in the
circumstances of the case. That is because even if the test suggested by the
applicants is the appropriate one, the Court of Appeal and Supreme Court
concluded that there was a risk of “significant harm” to CG (see paragraphs 30 and 36).
They arrived at this conclusion on reviewing the decision of the High Court
which considered extensive, expert evidence and heard from all concerned with
CG’s daily care, who concluded, unanimously that it was likely he was being
exposed to continued pain, suffering and distress.
120. The domestic
courts also found, based on that extensive, expert evidence that for CG to
undergo experimental treatment, with no prospects of success would offer no
benefit, and prolong his suffering.
121. The Court
reiterates that the question of whether an interference is “necessary in a
democratic society” requires consideration of whether, in the light of the case
as a whole, the reasons adduced to justify the measures are “relevant and
sufficient”. In considering the reasons adduced to justify the measures, the
Court will give due account to the fact that the national authorities had the
benefit of direct contact with all of the persons concerned (see M.A.K. and R.K., cited above, § 68). In the present
case, the Court accords the benefit of that direct contact even greater weight
given the contact that the domestic courts have had with all those concerned
and the extensive amount of technical expertise they have examined.
122. The Court
also recalls that where there is no
consensus within the member States of the Council of Europe, either as to the
relative importance of the interest at stake or as to the best means of
protecting it, particularly where the case raises sensitive moral or ethical
issues, the margin of appreciation of the domestic authorities will be wider
(see Dubská and Krejzová, cited
above, § 178, ECHR 2016, and also Parrillo v. Italy
[GC], no. 46470/11, § 169, ECHR 2015 with further references). The Court
has previously considered in the context of Article 8 that in respect of the
lack of consensus on access to experimental medical treatment for the
terminally ill, the margin of appreciation is wide (see Hristozov and Others, cited above, § 124). Moreover, it is clear that
the case before it raises sensitive moral and ethical issues.
123. The Court is also mindful that the essential object of Article 8 is to protect the
individual against arbitrary action by the public authorities. The Court has
already found that the legal framework in place was appropriate and that the
authorities have a margin of appreciation in this sphere. The Court therefore
considers that the legal framework as a whole has not been shown to be
disproportionate. It has also found that the benefit of the direct contact with
all persons concerned should be accorded significant weight. In such
circumstances, it reiterates that it is not for the Court to substitute itself
for the competent domestic authorities but rather to review under the
Convention the decisions that those authorities have taken in the exercise of
their power of appreciation (see Jovanovic v. Sweden,
no. 10592/12, § 76, 22 October
2015, with further references).
124. Therefore, examining the decisions
taken by the domestic courts in light of those considerations, the Court
recalls that they were meticulous and thorough; ensured that all those
concerned were represented throughout; heard extensive and high-quality expert
evidence; accorded weight to all the arguments raised; and were reviewed at
three levels of jurisdiction with clear and extensive reasoning giving relevant
and sufficient support for their conclusions at all three levels. Accordingly,
the Court does not see any element suggesting that those decisions could amount
to an arbitrary or disproportionate interference.
125. Therefore, this part of the
complaint is manifestly ill-founded.
In view of the above, it is appropriate to
discontinue the application of Rule 39 of the Rules of Court.
For these reasons, the Court, by a majority,
Declares the application inadmissible.
Done in English and notified in writing on 28 June 2017.
Abel Campos Linos-Alexandre Sicilianos
Registrar President
Appendix
|
No. |
Name |
Date of birth |
Nationality |
|
|
Charles GARD |
04/08/2016 |
British |
|
|
Christopher GARD |
24/06/1984 |
British |
|
|
Constance YATES |
02/12/1985 |
British |