I am undertaking a module on the sociology of childhood at the Institute of Education. One of the things we have discussed is the United Nations Convention on the Rights of the Child (UNCRC) (United Nations 1989) which is 25 years old this month. As last week’s Twitter Chat and Blog focused on children’s rights I thought I would continue this theme and reflect on children’s rights in relation to consenting or refusing medical treatment. In England, Wales and Northern Ireland children under the age of 16 years can legally give their consent to their own medical treatment if they satisfy the criteria of Gillick competence that is “if they have sufficient understanding and intelligence to enable him or her to understand fully what is proposed” (Gillick 1986).
The reality of clinical practice
However, the reality in clinical practice is very different. Adolescents appear able to consent to treatment but not refuse it. For example, in the case of Re R (A Minor) (Wardship: Consent to Treatment) [1992] Fam 11 CA the Court of Appeal made it clear that a Gillick competent adolescent had the ability to consent to treatment but that if they should refuse the treatment, consent can be given by someone else with parental responsibility over the child or the court. No child has been deemed Gillick competent when it comes to refusing life-saving treatment in the UK (Gorgy 2012). This is in part because the level of competency children are expected to demonstrate is unattainable (even for adults) (Jackson 2009, James & James 2004). On a day-to-day basis, in clinical practice, anecdotal evidence suggests children are considered competent if they agree with the health care professionals’ views and incompetent if their view differs. Indeed the law allows for a child’s refusal to have medical treatment to be challenged if it is deemed life threatening even if the child is considered competent (Cave 2011). Clearly children are not always considered competent to make decisions on their own behalf. This perhaps links back to a perception of children as becomings rather than beings and as such lacking rationality and needing protection (Lee 2001, Tisdall & Punch 2012). This is despite a plethora of evidence suggesting children are competent to make their own health care decisions (Alderson 1993, James & James 2004).
Can agency explain why children are not seen as competent to make health related decisions?
Agency may help explain, at least in part, some of the issues relating to children consenting to and/or refusing to treatment. Agency relates to the individual competence of children (James 2011). It has been argued that children by the very nature of their immaturity do not (yet) have the ability to make appropriate choices and that these skills are only acquired by learning, effort and practice (Purdy 1992). A recent study added to this conjecture concluding that the neuro-anatomical development of the brain and emotional and experiential capacity is not fully developed until the early-20s for girls and the mid-20s for boys (Mendelson & Haywood 2014). While others argue that even young children and neonates have agency (Alderson et al. 2005). From the examples provided above it would appear that within health care children’s do not always have agency. A perception that children lack agency may be why their views are often over-ruled or not taken into account when decisions about their health care are being made.
What does this mean for health care professionals?
I think in the month the UNCRC turns 25 years old health care professionals should reflect on whether we need to change our practices and perhaps start to challenge the interpretation of the law. It appears ridiculous that children are seen competent to consent to treatment but not to refuse it. Surely if they are able to do one they should be able to do the other? Does something magical happen when a child becomes 16 years old and suddenly they are deemed competent to refuse treatment? Are we more worried about the implications for us if a child dies who we have allowed to refuse treatment? Does it come back to the over medicalisation of death and the apparent need to carry on treating children who are clearly terminally ill? Let me know what you think.
Alison Twycross
Head of Department for Children’s Nursing and Reader in Children’s Pain Management London South Bank UniversityReferences
Alderson P (1993) Children’s consent to surgery. Open University Press, Buckingham.
Alderson P, Hawthorne J & Killen M (2005): Are premature babies citiziens with rights? Provision rights and the edges of citizebship. Journal of Social Sciences 9, 71-81.
Cave E (2011) Young people who refuse life sustaining treatment: A briefing paper on current law and the need for refrom. School of Law, University of Leeds., Leeds.
Gillick (1986): Respondent v. West Norfolk and Wisbech Area Health Authority.
Gorgy M (2012): Article 8 and minors’ right to refuse medical treatment. The Student Journal of Law.
Jackson E (2009) Medical Law Text, Cases and Materials, 2nd edn. Oxford University Press, Oxford.
James A (2011) Agency. In The Palgrave Handbook of Childhood Studies (Qvortrup J, Corsaro, W.A., Honig, M-S., ed.). Palgrave Macmillan, Basingstoke, pp. 34-45.
James A & James AL (2004) Constructing Childhood: Theory, Policy and Social Practice, 3rd edn. Palgrave Macmillan, Basingstoke.
Lee N (2001) Childhood and Society. Open University Press, Buckingham.
Mendelson D & Haywood J (2014): Minor’s decision-making capacity to refuse life-saving and life-sustaining treatment: Legal and psyhciatric perspectives. Joirnal of Law and Medicine 21, 762-773.
Purdy L (1992) In their best interest? The case against equal rights for children. Cornell University Press, New York.
Tisdall EKM & Punch S (2012): Not so “new”? Looking critically at childhood studies. Children’s Geographies 10, 249-264.
United Nations (1989): Convention on the Rights of the Child. United Nations, New York.