Bulletin of Medical Ethics: Page 13-15, October 1993.
In October, the European Association for Children in Hospital (EACH) met in Graz, Austria with delegates from East and West Europe and Scandinavia. EACH works to promote the Charter for Children in Hospital throughout Europe. This paper discusses the Charter.
Members of EACH have used the Charter as the basis for a range of activities, from a Michelin-type guide to good children's wards in France, to a finely illustrated Polish brochure showing how one hospital implements each section of the Charter. The ten points of the Charter (see p 14) offer an ethical foundation for the care of children in hospital.
Aspects of the Charter were reinforced by the 1989 United Nations Convention on the Rights of the Child, now ratified by almost every nation state. Basically, the Convention advocates three kinds of rights for children. Adults are happy to discuss the first two kinds:
However, many are uneasy about the third kind:
Some adults argue that if you let children decide for themselves, they will refuse medical treatment, because they are too ignorant, foolish and inexperienced to know their own best interests. Yet the right to self-determination is the key to all rights. You can talk about resources, care and protection under the heading of children's welfare or interests, but do not need to use rights language to promote these benefits.
The right to choose is a crucial part of being a right holder. Alice Miller, the Swiss psychoanalyst, has shown (1) that centuries of harsh, even cruel, child-rearing illustrate differences between adults' ideas of `care', `protection', what is `right for children', versus children's rights to choose how they would live. Austria is one of very few countries, so far to ban all physical punishment of children by law, and to have a children's Ombudsman. Children form the only group of people in the UK who are not protected from assault.
The UN Convention on the Rights of the Child clearly states that some children have rights to influence decisions affecting them:
States shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child will be given due weight in accordance with the age and maturity of the child. (Convention 12.1)
For this purpose, the child shall in particular be provided the opportunity to be heard in any judicial or administrative proceedings affecting the child, either directly, or though a representative or an appropriate body ... (12.2)
The right to the best possible medical treatment is a fundamental right, especially for children.
Taking the Convention and the Charter seriously means informing children, listening to them, and actively involving children who have views in making decisions about their care. It means listening to mothers who pick up clues from their baby about how the treatment is benefitting or harming them, and how it might be improved (2). It also means overcoming age-assumptions, such as that children aged under 3 years cannot understand explanations (they can), (3) or do not mind that their privacy and dignity being disregarded (they do), or that children aged 5 or 6 years can never take part in making complex, serious decisions about their treatment (some do), or that older adolescents do not need or want close mothering care (many do during the early days after major surgery).
Patients have unique, inside knowledge of their own case, and their parents can help them to be heard when they express their views. Some hospital staff say that mothers can be with their child in hospital as long as they support everything that hospital staff do. Of course, helpful cooperation is very important. But sometimes the best way for mothers to help their children is to point out how standards of care can be improved, and to insist that changes are made. The Charter for Children in Hospital grow out of the work of a few parents, nurses and doctors in England in the 1950s who said, `Our hospitals are not yet good enough, we must change and improve them' (4).
A crucial way to safe-guard children's rights is to avoid admitting them to hospital when possible and to avoid unnecessary interventions. Some professionals report on how `non-invasive' technology, such as scans, has beneficially replaced invasive surgical interventions. Such advances are to be welcomed. However, some people find scans frightening and psychologically invasive. Discussion of how one kind of technology replaces another risks diverting attention from the main question: Is the intervention really necessary? Will it do more good than harm?
Sadly in Europe, many children are denied the treatment and relief they need from illness, pain and disability through poverty, government economies or war. Yet other children are being over-treated, or have interventions which have not been evaluated through well-designed research. Very little health care is subjected to careful scrutiny (5). In beautifully designed and equipped wards, with the latest technology and highly skilled staff, it can seem impertinent to question the benefits of the treatment provided. There is a paradox, that the more professionals are convinced that they have provided a child centred refuge in an unfriendly world, the higher the risk that children and parents who question the care will be seen as negative and ungrateful, (6) so that their right to make informed choices can be threatened. For decades, research has shown the great harms perpetuated by the institutional care of children. Yet in many European countries, children are still kept in hospitals or children's homes, for weeks or months, for problems which could more effectively be treated at home, including minor eating and sleeping disturbance, or allegations of `bad mothering'. The new children's rights movement sweeping across Europe will help professionals and parents to listen more seriously to children, so that they are all better able to make truly informed decisions which respect children'srights.
(Dr. Priscilla Alderson is a research sociologist at the Institute of Education, London)
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