ABSTRACT
Having outlined the principles I propose should govern consent and refusal of consent to treatment, this chapter concerns both. At the heart of the issue here is whether treatment that could give a prospect of the continued survival of young children with severe disabilities should be provided. For some, this question will be answered by appeal to the principle of the sanctity of life or, as it is put in Art 2 of the European Convention on Human Rights (ECHR), the requirement to respect everyone’s right to life. This might be thought to require all steps possible to be undertaken to save or prolong life, since it has an inherent, overwhelming value, whatever the circumstances. For others, mere existence is not itself a benefit without consideration of the quality of that life. There are situations in which being alive is not only not beneficial, but is positively harmful to a child, to the extent that it requires steps to be taken to bring that life to an end. For yet others, a middle ground may be taken, which suggests that the sanctity of life is not an absolute principle, but that the crucial factors are the benefits and burdens of treatment and its predicted outcome. Clearly, complex and difficult questions are raised and these will be considered here.1 I will be discussing only children who are unable to consent or to refuse treatment. For competent children, my response has been given in the previous chapter and is that they should be able to refuse treatment on the same basis as those over the legal threshold for adulthood.
