Parents, the child’s health and the doctor: who decides? … The judge!
18 December 2012
Clare Dyer’s (1) report of a nine-year-old girl with asthma, who underwent years of inappropriate and potentially harmful treatment because her doctors chose to follow the wishes of her parents rather than responding to her true needs, offers an opportunity for reflection on the concepts of so-called “informed consent” and “best interests” of minors.
The High Court legal opinion appears without possible doubt: “the preservation of a working relationship with parents cannot take prevalence over the interest of a child”.
The young girl was admitted to hospital many times over a period between 2005 and 2011, where she was subjected to multiple treatments, including some that were unlicensed - the details of her story can only lead to the same conclusion as that of the High Court.
Yet the court’s decision actually shows, on the one hand, how the search for informed consent often results as being nothing but a mere gesture, put in place by the attending physician almost exclusively for purposes of defensive medicine. On the other hand, it also shows how those who point out the limits of informed consent do not necessarily deserve the accusations of paternalism levelled against them.
Ultimately, the judge of the High Court in London has only reiterated a principle that should be a common value of all practitioners: that of having the interests of the patient at heart, thus exercising treatment in a manner that avoids any harm. Naturally it is appropriate that this takes place through the active involvement of the patient in the choice of options among therapies.
However there are patients who cannot consent in a full and free manner due to their young age, such as the in the current example, and we must also consider those in situations of incapacity, for example in the case of dementia. In such cases, who has the right of discourse on behalf of the patient in the selection of therapy? The parents? A legal guardian? It depends on the extent to which those responsible truly wish to pursue the best interests of the minor or the mentally incapable person who is under their charge - because it is implicit that where such actors abandon the path of best interests, so natural to their charge, the evaluation of the appropriate choices among therapies must then obviously fall under the exclusive professional domain of the practitioners.
This is not at all a return to paternalism, but rather a call to the deontological duty to heal, unique to the medical profession, which the High Court judge here repeats with clear emphasis.
In fact the 1997 Oviedo Convention underlines the need for special protection, in favour of individuals who for reasons of age or illness are incapable of expressing their will, specifying that the parent or legal representative of such an individual can only withdraw their authorisation of treatment when they believe that it is not carried out in the interests of the minor or incapacitated person (2).
In the context of the case submitted to the High Court, it does not seem that the parents’ opposition to appropriate treatment had been motivated by any reasonable apprehension of the possible long-term collateral effects of inhalatory cortisone therapy (3).
In fact, Clare Dyer’s explanation of the events would actually suggest very different and much more problematic motivations in the parent-child relationship (4).
However the principle emphasised by the High Court, while highly laudable for the reasons noted above, is in reality one of difficult application.
This is revealed not only by the story of the girl in London, who had to wait six years before seeing her rights to health put before those of parental authority, but also by an episode involving another child in the realm of Italian justice. In the Italian case, occurring at roughly the same time as the London judge expressed such clear and significant concepts, the proceedings arrived at a diametrically opposite conclusion.(5)
The events took place in 2006, when a Nigerian child arrived under hospital care following the results of one of the lesser forms of infibulation. It was also in 2006 that in Italy had made all such practice illegal. The case was promptly brought to the attention of the Italian magistrates and the parents were tried and sentenced to detention. However the convictions were overturned under appeal, in November 2012. The parents were acquitted because, according to the judge, both were motivated by the desire to protect their daughter, since if this type of intervention were not executed at birth or soon after, the child would be subject to discrimination in her home country, given that among the Bini people of the family’s ethnic group, this was still a traditional and wide-spread practice.
This decision could certainly be questioned and further interpreted, depending on the perspective of the benefits requiring protection. Do they concern the parental role and the sharing of an ethnicity, or rather the health of the minor? And what of the principle of self-determination that such a child might wish to exercise as an adult, to reject the cultural or religious choices of her parents or others acting in their place? It is easy to realise that, in the exercise of our wonderful but challenging profession, there are cases where determining the prevalent interests of a minor becomes an interpretive task that a physician cannot be expected to solve alone. Ever more often, there is a need for multidisciplinary support from other professions (such as psychologists, bioethicists, social assistants and cultural mediators), to arrive at a shared solution that can be viewed as truly chosen for the exclusive benefit of such complex typologies of patients.
1. Dyer C. Doctors must put needs of child before relationship with parents, judge rules. BMJ, 2012; 345: e7901.
2. Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo 4.4.1997, article 6.
3. Kelly WH et al. Effect of Inhaled Glucocorticoids in Childhood on Adult Height. NEJM, 2012; 367: 904-912.
4. Charfi R et al. Munchhausen syndrome by proxy revealed by falsely toxic methotrexate levels. Ann Biol Clin, 2012; 70:221-5.
Venice Appeals Court, Second Section, sentence of 11.23.2012
Competing interests: None declared
Medical Directorate, Policlinico Universitario "A. Gemelli", L.go "A. Gemelli", 8 - 00168 Roma (Italia)
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