A National Health Service Trust v. D & Others [2000]

This case involved a 19-month-old child with severe, irreversible and worsening lung disease, which gave him a short life expectancy (he also had heart failure, hepatic and renal dysfunction with a background of severe developmental delay). The judgment opined that existing domestic principles concerning when treatment may lawfully be withheld from a seriously disabled and terminally ill child were compatible with Articles 2 and 3.

The High Court held that it would be lawful to declare that mechanical ventilation would not be in the best interests of the child and hence could be withheld. This was on the basis that further use of mechanical ventilation would inevitably lead to further periods in intensive care ‘bringing a death which was neither peaceful nor dignified’.

The judgment noted that there could be no Article 2 infringement because the treatment proposed was in the best interests of the child. It further noted that Article 3 included the right to die with dignity ( D v. United Kingdom 1997).

The Court outlined four general principles applying to children and the end-of-life decision-making process:

1. • the Court's prime and paramount consideration must be for the best interests of the child, which included careful consideration of parental views. Such views could not override the Court's view of the child's best interests;

2. • the Court had a clear duty to respect the sanctity of human life, which imposed a strong obligation in favour of taking all steps capable of preserving life, save in exceptional circumstances;

3. • a course aimed at terminating life or accelerating death could not be approved (the Court was concerned only with the circumstances in which steps should not be taken to prolong life); and

4. • there could be no question of a court directing a doctor to provide treatment that the doctor was unwilling to give and that was contrary to that doctor's clinical judgement.

An NHS Trust v. S (by his litigation friend the Official Solicitor), DG (S's father) and SG (S's mother) [2003]

This case concerned a teenager (S) aged 18 who had a developmental age of 5 or 6 because he had been born with the genetic condition velocardiofacial syndrome. He had severe global developmental delay and intellectual disability and was diagnosed with autism. Following an emergency admission for acute renal failure he received haemodialysis. His severe intellectual disability seriously complicated his medical treatment and he clearly lacked capacity to consent to treatment. The hospital trust brought the case to court to seek clarification about his future treatment and management of his end-stage renal failure, including the potential of an arteriovenous fistula (he had a fear of needles) and a renal transplant. The judge concurred that S was incapacitated in making decisions about his future medical care and all such decisions were under the doctrine of best interests. He made specific declarations as to future interventions, including the possibility that an arteriovenous fistula should not be excluded after he had settled into the adult way of life; peritoneal dialysis could be considered when haemodialysis was no longer considered effective; and the possibility of a kidney transplantation should not be excluded on non-medical grounds.

The judgment also made pertinent comments regarding treating such incapacitated patients in their best interests and with regard to their Article 2 Convention rights. The Court noted that the Convention requires that an incapacitated person with serious physical and mental problems should not receive ‘less satisfactory treatment than a person who has full capacity to understand the risks, pain and discomfort inseparable from such major surgery’ and to act in any other way would be contrary to the rights of a mentally incapacitated patient both under UK domestic law and under the Convention.

When considering best interests in these cases the Court noted that the sanctity of life was a fundamental principle and there was a strong presumption in favour of a course of action that would prolong life. In the important case of Airedale NHS Trust v. Bland [1993], which considered the withdrawal of life-prolonging treatment in a man in a persistent vegetative state, the judgment opined, however, that the principle of the sanctity of life ‘fundamental as it is, is not absolute … there is no absolute rule that the patient's life must be prolonged by such treatment or care, if available, regardless of the circumstances’.

The Court reiterated its inherent jurisdiction to grant declarations as to the lawfulness of the proposed medical or surgical treatment on those incapable of consenting to treatment, especially where there is disagreement between family and treating clinicians. The assessment of best interests was ‘not a narrow one’ and ‘encompasses medical, emotional and all other welfare issues’ ( Re A (Male Sterilisation) 2000).

Re C & F (Children) [2003]

This judgment involved two similar (but unconnected) applications listed together, relating to two girls aged 4 and 10. The girls had not been inoculated nor received any form of immunisation (although strongly recommended by doctors and widely taken up, it was not a legal requirement). The fathers both considered that there was convincing medical evidence for their daughters to receive a range of immunisations appropriate to their age in their best interests. Both of the mothers opposed this and considered that immunisation presented unacceptable risks.

The Court observed that where there is such a dispute between parents that they are unable to resolve, either of them may apply to the Court for a specific issue order pursuant to Section 8 of the Children Act 1989 (Residence, contact and other orders with respect to children) to determine the issue. The fathers so applied. (This was believed to be the first time that the question of immunisation had arisen for determination – other disputes involving medical treatment, choice of schools and change of name arise quite frequently.)

Under Section 1 of the Children Act (Welfare of the child), the Court had to determine whether immunisation was in each of the girls' best interests because their welfare was the Court's paramount consideration. If it was in their best interests, the Court needed next to consider whether there were good reasons why that declaration should not be made (such reasons might arise if making the declaration would so affect the mother that her ability to care for the child would be impaired, or it would be otherwise adverse to the child's best interests).

In considering Article 8, the Court noted that it may interfere with the competing rights of both parents and children where to do so was to protect the health of a child. The Court further opined that the parent with whom a child is living, whether mother or father, does not have greater rights than an absent parent who is entitled to be consulted on major decision in the child's life (each of the girls lived alone with their respective mother).

The Court decided that under Article 8, it was legitimate for the court to interfere with the rights of both parents and children where the purpose of doing so was to protect the health of a child. On the medical evidence the Court ruled that immunisation was in the children's best interests, even without the consent of their mothers.

Sentges v. The Netherlands (2003)

The Dutch health authorities and insurance companies refused to fund an expensive robotic arm for a young man with Duchenne muscular dystrophy, which would have enhanced his autonomy and enabled him to live at home for longer. The Court noted that Article 8 does not merely compel the state to abstain from interference with a person's private life (a negative obligation) but may impose positive obligations inherent in effective respect for private or family life (i.e. adoption of measures designed to secure respect for private life).

The applicant submitted that the refusal to be provided with a robotic arm infringed his Article 8 rights. The Court rejected the complaint and noted that regard must be had to the fair balance that must be struck between the competing interests of the individual and those of the community as a whole. The Court also noted that the already wide margin of appreciation was even wider when the issues involve assessment of priorities in the context of the allocation of limited state resources – i.e. there is no guarantee of a specific level of care of medical treatment and lack of resources may influence this.

Glass v. United Kingdom (2004)

The applicants in this case were a mother and son. The son was severely disabled and needed 24-hour care. His mother opposed the use of diamorphine to alleviate her son's distress when he became critically ill following an operation. It was considered that resuscitation would not be in the son's best interests. The mother asked to take her son home if he was dying but was advised that she would be arrested should she attempt to remove him. The mother believed that the dose of diamorphine was excessive; family members believed that the doctors were carrying out covert euthanasia. They attempted to prevent the doctors from entering his room and a fight broke out. The mother successfully resuscitated her son while the fight ensued and he subsequently improved such that he was discharged.

The mother alleged that both her own Article 8 rights and those of her son had been breached. The European Court agreed that the Article 8 rights of the son had been breached. The decision to administer diamorphine to the son in defiance of his mother's objections amounted to an interference with his right to respect for his private life and in particular his right to physical integrity under Article 8(1). Under Article 8(2), the interference was in accordance with the law, the action taken by the hospital staff pursued a legitimate aim and it was not the doctors' intention to hasten the son's death. In deciding whether the interference was necessary in a democratic society, the Court was not satisfied as to why the hospital failed to seek High Court intervention (the onus being on them to initiate such a procedure), especially as the prognosis was deemed to be poor and they knew that their proposed treatment would not meet with the mother's agreement. Furthermore, the Court was not convinced that the need to provide diamorphine constituted such an emergency that High Court involvement could not have been sought at that stage (especially because the best-interests procedure can be invoked at short notice).

R (on the application of Sue Axon) v. The Secretary of State for Health and The Family Planning Association (Intervenor) [2006]

The claimant (a parent) applied for judicial review of a Department of Health document (2004) providing guidance to health professionals on giving advice and treatment to people under the age of 16 on sexual matters.

The guidance stated that the duty of confidentiality owed to a young person was the same as that owed to any other person. This was not absolute and could be overridden in exceptional circumstances where there was a risk to the person's health, safety or welfare. It provided that a health professional could give advice and treatment on sexual matters, without parental knowledge or consent, provided that the young person understood the advice and its implications. Any advice or treatment would be in their best interests. The guidance also recommended that doctors follow the criteria set out by Lord Fraser in Gillick v. West Norfolk and Wisbech Area Health Authority (1986), i.e. the Gillick competency test.

Among several concerns, the parent in particular contended that the guidance was unlawful and health professionals should not be entitled to provide advice and treatment on sexual matters without the parents' knowledge. Furthermore, the guidance failed to discharge the state's positive obligation to give practical and effective protection to her rights for a family life under Article 8. The seminal (pre-Human Rights Act) Gillick decision was reconsidered in depth with regard to Article 8.

The judgment opined that it was important to recognise that, on the whole, a parent was the best person for guiding a young person under the age of 16 and that parents had a duty to protect their children. However, although secrecy was destructive to family life, those factors did not override the duty of confidentiality owed to the child. The judgment emphasised the principle of respecting the confidentiality of health information ( Z v. Finland 1997; MS v. Sweden 1999) and that a duty of confidentiality was owed to a young person by healthcare professionals.

The judgment ruled that the guidance was still lawful and made it clear that the initial duty of a health professional was to seek to persuade the young person to inform his or her parents and that Gillick guidelines were to be followed. Any treatment and advice must be in the best interests of the young person. It concluded that there was no infringement of the Article 8(1) rights of a young person's parents if a health professional were permitted to withhold information about a young person relating to advice or treatment on sexual matters.

Even if the guidance did interfere with parents' rights under Article 8(1), the judgment explained at paragraph 59 that interference would be justified under Article 8(2) as being ‘necessary in a democratic society for the protection of health … or the rights of others’. First, there was clear evidence that confidentiality increased the use of contraceptive and abortion services for those under the age of 16; second would be the ‘disturbing consequences’ of young people being deterred from obtaining sexual advice and treatment; and third, the guidance did not interfere with parental Article 8 rights because a child's Article 8 rights override similar rights of a parent ( Hendricks v. Netherlands 1992; Yousef v. Netherlands 2003). Thus, the Gillick principles were unaffected by Article 8 and continued to be valid and applicable.

The judgment specifically assessed the issue of proportionality, a central principle in the application of Article 8. It applied a test of proportionality from previous jurisprudence ( de Freitas v. Permanent Secretary of Ministry of Agriculture 1999, at paragraph 80):

1. (i) the legislative objective is sufficiently important to justify limiting a fundamental right [e.g. the objectives of reducing pregnancies and curing STDs in young people; the importance of confidentiality for young people seeking advice on sexual matters];

2. (ii) the measures designed to meet the legislative objectives are rationally connected to it [i.e. Lord Fraser's Guidelines and the 2004 Guidance were designed to meet these objectives as well as being rationally connected to it]; and

3. (iii) the means used to impair the right or freedom are no more than is necessary to accomplish the objective [i.e. the terms of Lord Fraser's Guidelines and of the 2004 Guidance go no further than are necessary to achieve the objectives].

Re OT (A Child) [2009]

This Court of Appeal judgment considered Article 8 in refusing permission for parents to appeal previous orders made by the High Court ( Re OT 2009) as to the end-of-life care of their 10-month-old child. The previous order had stated, notwithstanding the refusal of the parents to consent, that it would be lawful and in OT's best interests for the hospital to withdraw and withhold treatment in the knowledge that this would lead to OT's death soon after.

The child had a rare mitochondrial condition of genetic origin. He was completely dependant upon ventilation. A stroke had led to permanent brain-stem damage; he was unable to suck or swallow and needed nasogastric tube feeding. He consequently needed regular oropharyngeal and tracheal suctioning, which evidently caused not only discomfort but great pain. Whatever future interventions, he would probably die before reaching the age of three.

The trust contended that OT's death was inevitable and that any prolongation of interventions that had been used to keep him alive and improve his condition had proved unsuccessful and had actually caused ‘gratuitous pain’ (pain without countervailing benefit). The hospital contended that the time had come to be allowed to discontinue treatment, knowing that this would result in OT's immediate death. The parents vehemently opposed this.

The parents contended that their refused application for an adjournment by the High Court was a procedural flaw that infringed OT's Article 8 right to private and family life. They also contended that the hospital's delay in taking legal proceedings until after a deterioration in OT's condition was ‘unacceptably, and in terms of human rights unlawfully, late’ and should have been taken earlier when it was clear that the hospital's views about future treatment would collide with parental views.

The Court was reminded of ‘the timing question’, which needed to be ‘fact and case specific’, in the similar case of Portsmouth Hospitals NHS Trust v. Wyatt [2005], which opined at paragraph 98 that:

The Court of Appeal ruled that the parents were not allowed to appeal the previous decisions of the High Court to refuse their adjournment application and to proceed with a determination of best interests of their child.