British Medical Journal, Volume 308: Pages 1182-1183, 7 May 1994.
J P H Shield, Research Fellow
J D Baum, Professor of Child Health
Institute of Child Health, University of Bristol, Bristol BS2 8BJ
Listen to the children - they will have to live with the decision.
I would like to see the age limits completely scrapped, and maturity brought in. As you grow up your age has a stereotype. I'm trying to escape from that stereotype."
-- Robin, aged 13 - quoted in Children's Consent to Surgery1
If competent to understand the consequences should a child be able to consent, and more importantly, refuse to consent to treatment? Some recent rulings in the English law courts have apparently disenfranchised children, and the debate has resurfaced on their rights to self determination. The issue has a tremendous impact on paediatric practice, and all those who care for children should have a clear understanding of thelegal and ethical consensus.
From the late 1960s to the early 1990s changes in the law on consent progressively increased the rights of those under 18 to self determination - always dependent on their capacity to understand the implications of their decisions. The case of Gillick v West Norfolk and Wisbech Area Health Authority established that children under 16 years could give legally effective consent to medical treatment, independent of their parents wishes, provided they had sufficient understanding and intelligence.2
The position was reversed in 1992 in the case Re W, an orphaned girl in a children's home who refused to eat. she was forcibly tube fed until her 16th birthday, when she applied to the courts to allow her the adult right to refuse treatment. Lord Donaldson ruled that no one under 18 years has an absolute right to make his or her own decisions on medical, treatment especially when that treatment is refusal.3 Many commentators pointed to the "Catch 22" created - patients whose competence is in question are found rational and able to give consent if they accept the advice of the doctor; but are judged incompetent if they reject the same advice. Re W may have been an extraordinary case, but the ruling could be viewed as a licence to bulldoze children into treatment regardless of their personal wishes, fears, or capacity to understand the implications of their decision.
Children do have some rights from international and national legislation. The United Nations Convention on the Rights of the Child advocates the right of every child to self determination, dignity, respect, non-interference, and the right to make informed decisions. The European charter for children in hospital states that "children and parents have a right to informed participation in all decisions involving their health care. Every child should be protected from unnecessary medical treatment and investigation."5 The Children Act 1989 states that children's wishes and feelings should be incorporated into the decision making concerning them. In theory, the pronouncements of the United Nations and the European Charter are atvariance with the current English law.
In practice in almost all circumstances this apparent conflictwill not matter.
Clearly those rare life or death decisions in which the minor refuses treatment must be resolved in the courts. This does not eliminate the medical professionals' responsibility carefully to consider the views of the child in conjunction with those of the parents or guardians. If there is an impasse, however, it is law that is equipped to judge whether a child fully understands the implications of such a decision in which case the opinion of doctors or parents could be overturned. Only when a decision is so urgent that it calls for immediate action might it fall to the parents or doctors to go ahead with treatment regardless of the child's wishes. In all but these most extreme cases, however, it should be mandatory to secure a child's consent to treatment in addition to that of the parents, provided that the child has the capacity to understand the implicationsof assent or refusal.
The crucial question is, then, when does the child have the capacity to make such decisions? There is no simple answer to this. In her recent book Priscilla Anderson gives data on children undergoing paediatric orthopaedic surgery; she discusses the age when patients, parents, and health professionals thought that children could decide for themselves whether they wanted surgery that was not lifesaving. The children themselves set the highest threshold age for self determination at 14 years; the parents put it slightly lower at 13.9 years; and remarkably, the health professionals chose the lowest figure, 10.3 years.1
While the age of informed consent remains contentious, an attempt should be made fully to explain the procedures and potential outcomes to the child, as stated by the European charter, even if the child is too young to be fully competent. After all it is the child who will have to live with the outcome of the procedure. One of the many themes running through Alderson's book is the dismay and anger expressed by children who felt cheated by the explanations or lack of them, from parents and clinicians. Children who are legally too young to give consent to treatment must still be treated as individuals whose rights as members of society are not solely dependent on the legal definition of the day. Before accepting any consent the clinician responsible must be sure that both child and parents understand, to the best of their capacity, what is entailed -- so enabling them to make a collective, considered decision. The doctor must be able to show that the views of the child were taken into account and write notes to that effect in thechild's health records.
In all but the most life threatening circumstances it amounts to an abuse of a child's rights as a member of society to disregard a refusal to consent to treatment if the child seems to have made a fully informed and considered decision. This is especially true in the 1990s - for with the classic family unit having so often disintegrated the child may have a more stable and balanced viewpoint than either parent.
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