A child’s right to make their own decision?
The Great Ormond Street hospital programmes are full of examples of difficult and sometimes heart-wrenching decision making about children’s treatment. In the end whose decision is it to proceed with a treatment or not? The medical team are the experts in the treatment, the parents have expertise in their children and a responsibility to act in their best interests, but then it is the children and young people who have to actually undergo the treatment and any associated pain – and have their own expertise on themselves. These decisions will usually be reached by discussion and negotiation but it may be that the medical practitioner, child and parents all have different views about the appropriate course of action.
The United Nations Convention on the Rights of the Child (UNCRC) is clear that children who are capable of forming their own views have a right not just to express those views but also for them to be given due weight in any decision making about them (article 12). They also have the right to appropriate information to help them reach that decision; yet they may often feel they have the least power in making decisions that affect their own lives. These principles are reinforced in child care legislation across the UK but it still leaves the question of how we know if a child or young person is capable of forming their own views and what weight in the end to place on them – note that this is not simply based on age but on ideas of ‘capacity’, ‘competence’ and ‘understanding’.
Sometimes these dilemmas can be clarified in court such as in the landmark ‘Gillick’ case where the House of Lords agreed that young people under the age of 16 could be prescribed contraception without their parents’ permission. This case (and the subsequent ‘Fraser guidelines’) established the principle that children and young people could consent (or refuse) medical treatment if he or she fully understood the treatment proposed and its consequences. It limits parental authority in line with the evolving competence and maturity of the child, competence which is often underestimated (1)
In the final programme in this series Jack has to make an extremely difficult decision about whether to undergo brain surgery in order to try and reduce the impact of his epilepsy. He is 16 and clearly understands the issues and the risks and both the medical staff and his mother seem to accept that the final decision is his. Even though it is an issue of understanding and not age, decisions can seem more difficult when younger children are involved. See for example Hannah’s story:
Hannah's choiceHannah Jones, 13, from Marden, Herefordshire, was diagnosed with a rare form of leukaemia at the age of five and had been in and out of hospital many times since then for treatment and operations. One element of the treatment had caused a hole to develop in her heart, which meant a transplant would provide her only long-term chance for survival. However Hannah felt that a heart transplant would be too traumatic for her and decided against the operation.
"I have had too much trauma. I didn't want this [a heart transplant] and it's not my choice to have it."
Hannah’s parents believed that she was capable of understanding the consequences of refusing treatment and, although difficult for them, supported their daughter’s decision. However, the health authority instigated high court proceedings seeking to remove her, temporarily, from her parents' custody in order to allow the transplant to take place. The court was poised to rule on who could decide what was in Hannah’s best interests. There were precedents for this, for example in 1997 a court had ruled that a 15 year old girl should have a heart transplant against her wishes (1).
Hannah was subsequently interviewed by a child protection social worker and they too agreed that although only 13 she had the capacity to make her own decision; in the end this led to the health authority dropping their legal proceedings. Hannah was free to decide to die with dignity if she wished.
(1)The case is known as - Re M (medical treatment: consent) 1999 2 Family Law Reports 1097
Despite feeling uncomfortable health officials eventually dropped this case and agreed that Hannah was competent to make her own decision.
These issues do not only apply to complex ‘life and death’ decisions like Hannah’s but to everyday routine medical practice. In fact understanding children’s rights and assessing capacity to make decisions is relevant to the practice of all professionals working with children. Each profession should have guidelines to help them make the right decisions with children ensuring their rights are respected.
What about the parents?
Parents will nearly always be involved in difficult decisions about their children’s treatment and where children cannot make an informed decision themselves parents will normally be in the position of acting on their behalf. In the Great Ormond Street Hospital grogramme we do not see Trinity (aged 7) being consulted on her treatment but we see the parents agonising over two very difficult decisions – whether Trinity should have brain surgery and then whether to have chemo- or radio- therapy. It is clear the surgeon believes the surgery is necessary and after careful explanation of all the risks the parents eventually agree.
However parents may not always accept that the risks to their child are acceptable and on rare occasions the courts are asked to make the final decision. A recent widely reported controversial incident concerning five year old Ashya King (see the story below) illustrated again how the law can get involved in decision making around children’s health.
Ashya King had a brain tumour which was operated on in Southampton Hospital. After conflicting views between parents and doctors regarding the best follow up treatment for Ashya his parents decided to take him out of the country for a specific treatment against medical advice. Legal intervention was sought to prevent this because of concerns that this action would expose the child to serious harm possibly endangering his life. All the agencies including children’s services and the police would have had to respond to these concerns , investigating the risk of serious harm to a child [in line, in this case, with the Children Act 1989]. Ashya was made a ward of court; his parents were arrested in Spain.
Very soon afterwards alternative views were being put by the family and an online petition was set up arguing that ‘it is the parents’ right and responsibility to try and get the best medical care for their children’ and suggesting the human rights of the parents were being violated in being prevented from doing so.
Although the parents were initially arrested, the decision about what was in the best interests of the child was not in the end tested out in court and the treatment was allowed to proceed in the Czech Republic. The progress of Ashya’s treatment since has remained controversial, and the long term outcome as yet unknown.
You can find out more about Ashya's treatment proton beam therapy with an interview with Great Ormond Street Oncologist Nick Plowman here.
These cases can be incredibly complex as was the case in 2000 when the courts were asked to decide whether co-joined twins Jodie and Mary should be separated against their parents’ wishes. One would die if the operation went ahead, both if it did not.
Again these two cases are examples of the more ‘extreme’ scenarios that end up in court and (often inaccurately reported) in the media and it is important to stress that most of the time these difficult and complex decisions are made with skilful negotiation between medical staff, parents and children – sharing information and trying to balance rights of children and responsibilities of parents. The day to day reality of this is illustrated in this series of programmes.