Children’s right to participate in medical decision making

Abstract

In 1900 Ellen Kay published The Century of the Child, foretelling that the twentieth century would be the century of the rights of children. Two years before her death in 1926, the Declaration of Geneva was the first of a series of International Charters proclaiming the rights of the child. This was followed by the United Nations' Declaration of the Rights of the Child (1959) and culminated in the 1989 United Nations' Convention on the Rights of the Child and the Declaration of Ottawa by the World Medical Association in 1998. The Victorian adage that children are to be seen but not heard has thus been shattered to pieces. Indeed, Article 12 of the Convention on the Rights of the Child (1989) ordains that children must be given a voice and their views and opinions respected and acted upon. One may wonder, of course, whether the Convention on the Rights of the Child could be dismissed easily as yet another document. 1bis would be a mistake, however, not only because of the fact that this is not just a Declaration but a Convention, but also because of the sheer fact that it has been signed and ratified by all countries except two: the United States of America and anarchic Somalia. Why the United States has signed but not yet ratified the Convention is an interesting matter in its own right, but the fact that this Convention has been ratified quasi universally demonstrates its importance. Yet one might still question the need for a particular instrument for children when the rights of children are, naturally, implicitly included in the Universal Declaration of Human Rights and other human rights instruments. The simple answer is that such implicit recognition was widely felt to be insufficient given the particular vulnerabilities of children and their corresponding need of special care and assistance. In fact, the Preamble to the 1989 Convention reminds one and all that the 1959 Declaration of the Rights of the Child states that "the child, by reason of his physical and mental immaturity, needs special safeguards and care, including appropriate legal protection, before as well as after birth." In spelling out the human rights of children, the Convention on the Rights of the Child makes provision for the rights to survival, protection, development and participation in decisions about their lives. In doing so, it has gone beyond the traditional 'needs.based rights' of children by sanctioning 'capacity.based rights' or 'choice rights'. These include a claim to greater autonomy in decision making with growing maturity, or to use the Convention's language, according to "the evolving capacities of the child" (Articles 5 and 14). Henceforth, the child is not to suffer medical interventions as imposed upon him by the paternalistic wishes of either the parents or the medic. The child is rather to be seen as being actively engaged in medical decisions through participation according to his or her evolving capacities. Hereafter, the traditional maxim maxima debetur puero reverentia takes on a new meaning. Yet, have we gone too far? Critics of the United Nations Convention argue that it erodes parental authority and the family while abandoning children to their rights. Indeed, a rights-based ethic will invariably stumble on the parental rights versus children's rights issue. Could there perhaps be other models to be used to stimulate ethical reflection on the child's participation in health care? How can the child's active involvement in health care be encouraged and nurtured? Ibis will be the core aim of the present work as it delves into the issue of the emerging new rights of the child and how these are to be respected in health care today.