Parents have the ultimate responsibility for their children. It’s even written into law in the Children Act 1989. Mothers and fathers have a duty to seek, and make decisions about, their child’s medical treatment. All parents will need to do this – deciding when to give paracetemol; how to treat a cut knee. But some, such as parents of a child diagnosed with cancer have to fulfil this responsibility within what one study has called the “extraordinary experience” of parenting a “child in crisis”.
This scenario creates an immediate tension. There is an obvious parental concern to ensure that their child receives the best possible care, and this can lead parents to question the quality of care provided. Failure to address their concerns can lead to delays in treatment, the undermining of trust and can result in a breakdown of the parent-professional relationship.
Ultimately, doctors cannot provide treatment to a child in their care without parental agreement, and if a disagreement cannot be resolved the dispute must be referred to court. The judge’s responsibility is then to determine the best interests of the individual child.
Although, clearly, parents, doctors and judges all seek to secure the best possible treatment for a seriously ill child, they may reach different conclusions as to what that entails. It is a deeply sensitive and difficult process. Court orders are expected to be complied with but parents may experience court proceedings as places of high conflict, adversarial proceedings which leave them unconvinced that the court is better placed to decide, than they are, what is best for their child.
Immediately upon diagnosis parents are required to make complex decisions about invasive and unpleasant life-saving treatment which might produce distressing side-effects which risk damaging, long-term, life-changing effects upon future quality of life.
The parental responsibility to care, protect, decide and advocate is redefined by the child’s illness. Studies of parenting of a child with cancer, such as that by Bridget Young and others, show that the practical reality of parental responsibility is intensive parenting, focused upon and responding to the needs of their child.
Parents will do all they possibly can to secure the very best treatment for their child. Parental instinct fulfils their legal duty to act in the best interests of their child and can often take them into contact with the judicial system, where the experiences can be hugely different.
The father of ten-year-old Jaymee Bowen sought judicial review of the decision of Cambridge Health Authority not to fund a referral for further treatment when a secondary cancer returned. He was unsuccessful in his legal challenge but, determined to secure her further treatment, he asked the court to end the order protecting her anonymity so he could raise money by publicising her story, which it did. Her treatment was eventually funded by an anonymous benefactor.
Concerned that the mother of seven-year-old Neon Roberts was “disengaging”, putting him at grave risk by missing appointments and causing delays to his treatment, his local health trust initiated legal proceedings. His mother sought out alternative treatments she hoped would avoid or reduce the long-term side-effects of post-operative treatment for brain cancer.
In proceedings that were highly charged for her, the mother was given the opportunity to provide studies to support her judgement of what was best for her child. But she failed to convince the judge who made a range of orders authorising the provision of conventional treatment and placing Neon in his father’s care to ensure he received it.
Following a breakdown in their relationship with his treating team, the parents of five-year-old Ashya King, removed him from hospital in Southampton without the knowledge of his doctors, shortly after surgery to remove a malignant brain tumour. They wanted Ashya to have innovative but as yet unproven proton beam therapy, not available in the UK, which they had discovered via the internet. After four hearings in wardship proceedings, the high court authorised his treatment at a Centre in Prague given assurances that funding and transport arrangements were in place.
Finally, the parents of ten-year-old JM ignored the orders of the court in their pursuit of the best possible treatment for their son. First, they notified the court they would not be present at the hearing. Adjourning proceedings, the judge made an order urging the parents to attend which was not served as the family could not be found. Judgment authorising the surgery, viewed by the paediatric oncologist who had been treating him as urgently necessary to prevent a “brutal and agonising death” from severe facial cancer, was given in the absence of JM or his family. They were believed by then to be in Poland seeking a second opinion.
What we see very clearly in the above examples is a consistent desire by parents to satisfy themselves that the medical treatment provided to their child is the best possible. It may involve researching alternative treatments, securing second opinions, finding a centre offering innovative, experimental or pioneering treatment. Parents may travel abroad, sell belongings or raise funds by other means in their relentless pursuit of the best possible treatment.
For courts, it is crucial that there is an appreciation of the reality of parental responsibility for seriously ill children, and an understanding of the circumstances in which parental concerns about the medical treatment of their child may develop into disputes requiring judicial resolution.
If courts are unable to demonstrate understanding of their experiences, parents may not be persuaded that court proceedings have, or will, represent their child’s best interests. As a consequence, they may ignore the order of the court and, as in the various ways the parents did in the cases noted here, may feel that they have no option but to take matters into their own hands. It is an outcome which is in no one’s interest at all.
Jo Bridgeman does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond the academic appointment above.