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Respecting Adolescents’ Autonomy (as Long as They Make the Right Choice)

      See Related Article p. 126
      It is no longer a shocking idea that young people should be actively involved in decisions about their own health care [
      • United Nations High Commissioner for Human Rights
      Convention on the rights of the child.
      ,
      • World Health Organisation (WHO)
      Adolescent friendly health services: An agenda for change.
      ]. This is reflected in current guidance about medical care for young people [
      • Society for Adolescent Medicine
      Access to health care for adolescents and young adults.
      ] and also young people's participation in research [
      • Society for Adolescent Medicine
      Guidelines for adolescent health research.
      ]. Indeed, we have come a long way since the days when children and adolescents were viewed as the property of their parents [
      • Sanci L.A.
      • Sawyer S.M.
      • Kang M.S.
      • et al.
      Confidential health care for adolescents: Reconciling clinical evidence with family values.
      ]. The “mature minor doctrine” [

      Gillick v West Norfolk and Wisbech Area Health Authority. AC 112 at 189 (1986).

      ] is now well enshrined in our thinking about adolescent development, reminding us of the need to assess young people's developing autonomy and respect their growing capacity to make rational decisions about their own lives.
      In the past, health professionals may have been correct in assuming their primary task was to protect young people's future autonomy. However, genuine respect now exists for young people's existing capacities. Of course, along with such awareness comes a requirement for assessment of young people's competence to determine the degree to which their current autonomy should be respected. The task of assessing competence is a highly complex one. There remains a lack of consensus about not only young people's developmental trajectory but also the methods for documenting this. Health professionals are thus placed in a difficult position; charged with the task of assessing competence in young people, but lacking the adequate resources to do so [
      • Larcher V.
      Consent, competence, and confidentiality.
      ]. Recent advances in neuroimaging hold exciting possibilities for new ways of understanding cognitive development [
      • McAnarney E.R.
      Adolescent brain development: Forging new links?.
      ,
      • Giedd J.
      The teen brain: Insights from neuroimaging.
      ]. Yet we are already being warned that the relationship between neuromaturation and the development of competence is far from direct [
      • Giedd J.
      The teen brain: Insights from neuroimaging.
      ,
      • Johnson S.B.
      • Blum R.W.
      • Giedd J.N.
      Adolescent maturity and the brain: The promise and pitfalls of neuroscience research in adolescent health policy.
      ,
      • Johnson S.B.
      • Sudhinaraset M.
      • Blum R.W.
      Neuromaturation and adolescent risk taking: Why development is not determinism.
      ].
      In this issue of the Journal of Adolescent Health, Talati et al. present a fascinating look at professional views on adolescent autonomy using the ethical dilemma of refusal of treatment [
      • Talati E.D.
      • Walsh Lang C.
      • Friedman Ross L.
      Reaction of pediatricians to refusals of medical treatment for minors.
      ]. Their paper presents findings from a study in which 421 American pediatricians completed a survey about their reactions to hypothetical scenarios in which treatment was refused for a minor suffering from cancer. The scenarios varied according to who was refusing treatment (the adolescent, the parent, or both the adolescent and the parent), the age of the adolescent (either 11 or 16 years), and the prognosis after treatment (either an 80% chance of survival or a 15% chance of survival).
      The findings indicate that pediatricians are more likely to accept refusal of treatment for a minor when the prognosis after treatment is poor and when the adolescent is older. In other words, as young people grow older, and as the importance of treatment decreases, pediatricians become more likely to accept a refusal of treatment [
      • Talati E.D.
      • Walsh Lang C.
      • Friedman Ross L.
      Reaction of pediatricians to refusals of medical treatment for minors.
      ]. When parents and adolescents concur in their decision about treatment, pediatricians are also more likely to accept a refusal.
      Few would be surprised that pediatricians' views on treatment refusal change depending on the age of the young person. Although not the only factor in competence assessments, it is fair to assume that cognitive capacities generally increase with age [
      • Weithorn L.A.
      • Campbell S.B.
      The competency of children and adolescents to make informed treatment decisions.
      ]. Life experience and knowledge also increase with age, both of which have been acknowledged as important factors in the development of adolescent competence [
      • Byrnes J.P.
      The development of decision-making.
      ]. This is not to say that all adolescents develop capacities in a linear fashion, or that all adolescents develop at the same rate, but simply that age is an important criterion when thinking about adolescents' competence in relation to medical decisions.
      The more important finding from an ethical perspective is the fact that pediatricians' views also depend on the prognosis of treatment. When the prognosis of treatment is good, 72% of pediatricians would ignore a 16-year-old's refusal when the parents are in favor of treatment. When the prognosis is bad, only 35% of pediatricians would ignore the refusal when parents are in favor [
      • Talati E.D.
      • Walsh Lang C.
      • Friedman Ross L.
      Reaction of pediatricians to refusals of medical treatment for minors.
      ]. Or, if we think about it in reverse, when prognosis is good only 28% of pediatricians would allow a 16-year-old to refuse treatment, yet when prognosis is bad 65% of pediatricians would allow a 16-year-old to refuse treatment, even when parents accept treatment. This finding is not likely to be unique to pediatricians. It is nonetheless ethically intriguing.
      Presumably, the competence of adolescents does not alter according to their prognosis of treatment. So how can we understand the fact that health professionals' views about adolescent competence alter according to prognosis? What does this mean about the way that health professionals view adolescent autonomy? Is it important? Does it matter?
      There are at least two possible explanations for the finding that adolescents' opportunities for decision-making are influenced by the significance of the medical intervention they are contemplating. First, it is possible that health professionals are being influenced by the quality of adolescents' decisions in determining their level of competence. That is, when adolescents make the “right” choice (one that health professionals view as being in young people's best interests), it is easier to assume they are competent. When adolescents make the “wrong” choice, suspicions arise about their capacities and health professionals are more likely to override their decisions. Second, it is possible that the degree of risk associated with a decision influences the degree of competence we require from a young person. Thus, as the risk of allowing an adolescent to make a decision increases, so does the level of competence required, if we are to respect the decision that is made.
      The question we must ask is whether such practices are ethical. Is it ethical to alter the degree of autonomy we afford adolescents based on how closely their choice reflects our own view of their best interests? Is this a necessary part of protecting adolescents' future autonomy at a time when we cannot be certain of their existing capacities for decision-making? Or does it undermine the concept of developmentally appropriate care by offering only conditional autonomy? The paper by Talati et al. cannot answer these complex ethical questions, but it offers an important step on our shared path to understanding how decisions are made about adolescent competence and the significant challenges surrounding such assessments in clinical practice.

      References

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        Convention on the rights of the child.
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        • World Health Organisation (WHO)
        Adolescent friendly health services: An agenda for change.
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        • Society for Adolescent Medicine
        Access to health care for adolescents and young adults.
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        Confidential health care for adolescents: Reconciling clinical evidence with family values.
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        Consent, competence, and confidentiality.
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        Adolescent brain development: Forging new links?.
        J Adolesc Health. 2008; 42: 321-323
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        The teen brain: Insights from neuroimaging.
        J Adolesc Health. 2008; 42: 335-343
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        • Blum R.W.
        • Giedd J.N.
        Adolescent maturity and the brain: The promise and pitfalls of neuroscience research in adolescent health policy.
        J Adolesc Health. 2009; 45: 216-221
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        • Sudhinaraset M.
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        Neuromaturation and adolescent risk taking: Why development is not determinism.
        J Adolesc Res. 2009; 25: 4-23
        • Talati E.D.
        • Walsh Lang C.
        • Friedman Ross L.
        Reaction of pediatricians to refusals of medical treatment for minors.
        J Adolesc Health. 2010; 47: 126-132
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        • Campbell S.B.
        The competency of children and adolescents to make informed treatment decisions.
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        The development of decision-making.
        J Adolesc Health. 2002; 31: 208-215

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