Feature

What right to health care?

Recognising the right of a child to good health and health care goes beyond simply providing resources, to embrace issues of autonomy and protection, says Priscilla Alderson

There are three kinds of rights — to resources, to protection and to autonomy. When people talk about children’s health rights they usually mention resources: ‘There must be enough intensive care cots for every baby who desperately needs one’; ‘Children have the right to life-saving heart transplants’; ‘Every child with short stature should have access to growth hormone treatment’. Children’s rights to protection also attract much support: protection from disease through immunisation; from injury through accident prevention measures, and from abuse and neglect through child protection agencies.

But all these topics could be discussed equally well under the heading of children’s needs or best interests. In some respects, ‘needs’ have little to do with ‘rights’ in its original meaning as rights to autonomy, self-determination and non-interference. What if a teenager does not want to have a rubella vaccination when she thinks she might be pregnant, but dare not tell anyone? How about the very short 10-year-old who says: ‘People will have to accept me for who I am. Why should I have all those injections, just to make them feel more comfortable? I want them to stop pressuring me.’ Should we respect a six-year-old who says: ‘They want to take me into care because we live in a squat, but I want to stay with my mum.’ What are the rights of a baby whose brief life is filled with painful interventions?

When adults define children’s interests, these can be very different from the way children experience their own interests. When children begin to express views, the arguments start, and many are framed in terms of health. The one-year-old who refuses to wear a coat is told, ‘You’ll catch a cold.’ Similar dire threats are held over children who disagree with adults on diet, bedtime, or leisure activities. The rationale often has more to do with exerting adult control than promoting children’s health or their rights.

Apart from confusion between perceived interests and rights, there can be conflict between different rights. Does the terminally ill child have a right to heroic treatment, or a right to die at home? Rights to resources can conflict with autonomy rights when well-informed children refuse a service, or want a different kind of care from the one offered. The rights of different children can conflict, when they compete for scarce resources.

Most ‘health rights’ do not have any legal status. A ‘right to a neonatal intensive care cot’ may be an aspiration; it is not a reality. The courts support doctors who withhold information and treatment if a ‘reasonable body of medical opinion’ would back the doctor’s decision. The parents, who asked the courts to order that their son’s much postponed heart surgery be performed, failed to get legal support. When access to information or care is a matter of medical or administrative discretion, it can hardly be called a right.

The main health right which does have legal status belongs to the original set of autonomy rights; it is the right, under laws of trespass, to refuse or consent to interventions which doctors propose. Children are the only people for whom others can consent on their behalf. Yet should children be able to decide in their own right? And, if so, at what age can they expect their decisions to be respected? During the 1980s, Law Lords in the Gillick case ruled that competent children do have consent rights. Children are competent if the doctor treating them considers that they have sufficient understanding and discretion to be able to make an informed decision about an intervention which is in their own best interests. In the 1990s, the courts have made more conservative judgements about children’s consent, suggesting that parents should be more involved than the Gillick judges required.

However, in practice, some hospital staff and parents do respect children’s decisions, including very serious and complex ones, as research with children having elective surgery has shown.¹ The 120 children in this study had serious illness or disability and were very experienced, well-informed patients. The interviewees described how informed and involved some children can be in treatment decisions, given time, support and respect. Some hospital staff said that children could understand very little about their treatment. Others said that it was essential to give details to young children including, for example, the hoped-for benefits but also the risks of spinal surgery or of heart-lung transplantation. Some staff said that years of working with children had increased their respect for the wisdom of younger children.

Some children aged from seven or eight years share in making informed decisions about surgical leg lengthening (extremely painful treatment which can last for years), spinal fusion, amputation or organ transplants. Younger children have shared in deciding when to end prolonged, unsuccessful treatment for leukaemia. Some surgeons take the child’s view very seriously.

In these economy-conscious times, campaigns to preserve services for sick children preoccupy supporters of children’s health rights. Yet alongside their need for NHS resources, children have other vital needs which link with their autonomy and protection rights. Some of these are stated in government guidance and in the 1989 UN Convention on the rights of the child which the government has ratified. Here are some examples.

Preventive healthcare This negative concept could be reframed as positive enjoyment of health by ensuring that all children have access to reasonable living conditions, safe and enjoyable play areas, and sports and arts facilities. Disabled people estimate that 70 per cent of state funding allocated for them goes on salaries for professionals. They want more direct payments and fewer professionals. How could children’s rights be respected by increasing child benefit and reducing the army of childhood professionals? We could see funding for children as an investment in all our futures, rather than a drain on the state.

Treatment Children need access to effective health services. They need protection from many routine practices which are useless or harmful. This requires well-trained staff who are prepared to criticise poor services, and to admit uncertainty about risky or unevaluated treatment. This opens the way to take account of children’s views, to respond to their misunderstandings, to negotiate treatment plans with them, and to respect their informed consent or refusal, or their wish to defer non-urgent treatment.

Research Effective healthcare depends on adequate research and evaluation. Most treatment is intended to improve the quality of life (rather than to save life) and the expert on quality is the person living that particular life. More comprehensive and sensitive methods of including children’s evaluations need to be developed in research and audit, as well as ways of involving children as informed and willing partners in the research. Further research is also needed into children’s abilities, to refute centuries of ignorant prejudice about their supposed inabilities.

Research reports tend to be hidden inside academic journals. Do children have the right to know about research findings which affect them? Should researchers spend more time disseminating their results and working with practitioners to implement those which can benefit children?

How can children’s healthcare become more sensitive and flexible, less regimented and intrusive? The slogan ‘value for money’ would make more sense if reworded ‘value for children’. This would mean taking account, when planning and providing services, of children’s needs, interests, preferences, their right to protection from harm, and their right to informed choice.