Parents of a child diagnosed with a serious illness are immediately required to make decisions about their child’s medical treatment which, in order to save life, may cause pain, unpleasant side-effects and risk damaging their child’s future quality of life. The actions, last summer, of the parents of five year old Ashya King offer just one example of the lengths to which parents will go to secure the best possible treatment for their child; researching alternative treatments, securing second opinions, finding a treatment centre offering innovative or experimental treatment, travelling abroad, selling belongings or otherwise raising funds for treatment. The Internet provides access to a host of information about the side effects and risks of conventional treatment, alternative treatments available across the world – if you can pay for them – and stories of their success.
In his judgment making orders about Ashya’s post-operative treatment, following surgery to remove a malignant brain tumour, Baker J referred to the “fundamental principle of family law” that the “responsibility for making decisions about a child rest with his parents” (In the Matter of Ashya King  EWHC 2964, ). His Lordship rightly noted that, in the vast majority of cases, a child’s parents are best placed to make such decisions but then continued, “the State – whether it be the court, or any other public authority – has no business interfering with the exercise of parental responsibility unless the child is suffering or is likely to suffer significant harm as a result of the care given to the child not being what it would be reasonable to expect a parent to give” .
The Children Act 1989 does place the primary responsibility for the care of children with their parents including the right to make decisions about their child’s medical treatment in the exercise of parental responsibility (s3(1)). It is focused, by parental instinct, upon the needs of their child thereby fulfilling their legal obligation to consent to the medical treatment they determine to be in their child’s best interests, without which the doctor would commit a criminal or civil battery. But to meet their responsibilities, parents depend upon healthcare professionals to exercise care in diagnosis and provision of treatment, to provide information and advice about treatment options, and to work in partnership with them. Professionals too have a legal obligation to act in the best interests of the child. The different roles, experiences, and perspectives of parents and professionals may, however, lead them to different conclusions on that issue.
In most cases, parents and professionals will work within the law without reference to it. However, the legal framework becomes particularly important in those cases in which parental concerns about a child’s treatment develop into an intractable disagreement; when it is in the best interests of a child for those most directly concerned in the provision of care to work together. Ashya’s parents believed that Proton Beam Therapy, not available in the UK until 2017, presented the best possible chances of eradicating the cancer with the least detrimental effects upon his quality of life. They refused their consent to the conventional radiotherapy and chemotherapy offered at Southampton General and sought to secure the treatment they considered best. Without parental consent, Ashya’s doctors could not treat nor could they provide the innovative treatment his parents preferred. A stalemate occurred. The treatment Ashya urgently required was delayed. In such circumstances, the State does have business interfering in the interests of the child. The issue is how.
Not, as Ashya’s father Brett indicated, and the reference by Baker J to significant harm alludes, in the form of threats to commence child protection proceedings. Denied by University Hospital Southampton NHS Foundation Trust, either way, there was a misunderstanding of the role of the law. Child protection proceedings are not appropriate when there is a genuine difference of opinion between the parents of a seriously ill child and caring professionals on the question of the best medical treatment.
The boundaries of parental obligation are set by the criminal law including the specific obligations imposed upon those caring for a child to secure medical treatment, food, shelter, and clothing for the child (Children and Young Persons Act 1933, s1). Prosecutions have been brought where parents have failed to secure medical treatment. Threats to take criminal action are not an appropriate response to the actions of caring parents seeking to secure the best possible treatment for their child.
In the 2004 case of David Glass, the European Court of Human Rights stressed that when disagreement arises between parents and professionals, the onus rests with the Trust to defuse the situation (Glass v United Kingdom  1 FLR 1019, ); in the last resort referring the matter to court in family proceedings. Communication broke down between Ashya’s parents and doctors, for which the Trust subsequently apologized. Ashya’s father has explained that the doctors refused to discuss alternative treatment with them. The law imposes an obligation upon both parents and professionals to act in the best interests of the child. The provision of medical treatment to a child depends upon their co-operation in the shared endeavour of care. But that depends upon understanding of, and response to, the concerns of parents catapulted into their worst nightmare. Using the law as a threat will damage not foster this relationship. Baker J emphasised parental responsibility but did not address the co-existent responsibilities of healthcare professionals and public authorities to work together with parents in securing the best possible care for a seriously ill child, respectful of their distinct perspectives and concerns.
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