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c h a p t e r e l e v e n Who Should Decide and How? Priscilla Alderson, Ph.D. “With leg lengthening, only the person who is going to have it can decide whether to have it. I decided when I was eight.” (Amy, age 10, whose mother agreed) (Alderson 1993, 30) “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, age 13) (ibid., 43) “He is an exceptional and unique person. He likes to maintain his integrity as a human being, and he felt violated by the way they treated him, dirty. I found that he had put the clothes that he had worn at the clinic and even his teddy in the rubbish bin. I felt his refusal [of proposed treatment] was right. He may have a small body, but he has a great personality.” (Mother of a 10-year-old boy) (ibid., 39) The questions, Who should decide about children’s surgery? and How? involve further questions:Who is informed enough to decide?Who is competent to decide?Who ought to decide?And may competent people choose to refer that responsibility to others ? How are decisions about surgery made, and possibly shared? And could we promote more just, benign, and efficacious ways of making decisions about surgically shaping children? The replies to these questions rest on different kinds of knowledge and authority in research evidence, law, and ethics. (The term children refers to minors ages 0 to 17, from babyhood to young adulthood, and in this chapter usually involves children and young people ages 4, 5, or 6 onward.) Evidence, Law, and Ethics Discussion about consent and competence is informed by research evidence of how people understand and make decisions, and here I draw mainly on my sociological research with children having surgery or talking about their impairments, and with their parents and professionals who care for them (Alderson 1990, 1993; Alderson and Goodey 1998). Competence is partly a legal issue. American states tend to set 18 or 19 as the age of consent to medical treatment, except for “mature minors,” such as those needing treatment for drug or alcohol abuse. Paradoxically, they can consent at a younger age than their seemingly more responsible peers. In some parts of Canada the age of consent is 13. In the United Kingdom, although young people have the right to consent from 18 and often from 16, there is no specified lower age. Children can give valid consent if they understand fully what is involved, and have the discretion to make a wise decision in their best interests, and if the doctor treating them considers that they are competent (Gillick All ER [1985]; Age of Legal Capacity Act 1991). Although an earlier court ruling, that parents’ rights “terminate” when the child is competent (Gillick [1985]) was later challenged, English law recognizes that the competent child’s consent to treatment can override parents’ refusal, although a parent’s consent can override a (“Gillick”) competent child’s refusal (In re R [1991] 4 All ER 177; In re W [1992] 4 All ER 627). Children have more rights to confidentiality and to make treatment decisions if they use free state services, as in the United Kingdom, than when their parents pay for them directly or indirectly. However, whereas adults’ self-destructive and seemingly irrational decisions are respected in English law, legally valid decisions for and by children must respect the child’s welfare and best interests. As with patients of any age, choices are limited to what treatments the doctor decides to offer. The consent of competent children is controlled by adults’ discretion and determinations about whether the child is“competent or mature”; the choice is in the child’s“best interests ”; the treatment is available; and the treatment is paid for. Ethical questions—Who ought to decide? How? and Why?—invoke principles and values, which I approach in three main ways: by reviewing a range of ethical positions and authorities; by analyzing some of the moral assumptions about children and parents that reflect and reinforce current values; and by aiming to justify respect for children’s views and decisions as a logical conclusion. The next section discusses theories and research methods.These inevitably and inextricably shape all research evidence and conclusions, as well as debates about the contentious topic...

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