The case of 13-year-old Hannah Jones in the UK demonstrates the fundamental tension of state paternalism and the rights of citizens to exercise rational self-governance.
Hannah developed leukaemia earlier in her childhood and the subsequent course of chemotherapy led to the development of a life-threatening heart muscle damage (cardiomyopathy). Hannah now faces the dim prospect of succumbing to heart failure or confronting the uncertainty of transplantation and the possibility that the drugs required to prevent rejection of the transplanted heart will lead to the recurrence of leukaemia.
Hannah remains adamant that she does not wish to face the risks of transplantation. Hannah’s parents, both professional people “respect their daughter’s wishes”. In the face of this, the local hospital sought a legal order to remove Hannah from the care of her parents and place her under the care of the state, presumably to be compelled down the pathway of transplantation. The hospital’s management only relented after a child protection officer deemed that Hannah and her family were competent to refuse transplantation.
Hannah’s case raises numerous points of debate in medical ethics, the most prominent of which is the place of the state in the decisions citizens make about their lives, and deaths.
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In any liberal society, a citizen has the right to self-rule (positive rights) and the right to no interference with that right of self-rule (negative rights) — except where the exercise of those rights imperils others. In bioethics, the right to, and capacity for, self rule is discussed in terms of autonomy.
In the case of a child, as distinct from an adult with a dementing illness, the issue of autonomy is more complex as children develop the capacity for decision-making as they mature and as they develop their own identity. This is a period of transition between “childhood” — where parents are invested with the right to make decisions in terms of their child’s best interests, and “adulthood” — where it is recognised that any competent citizen can make decisions about their own health and well-being, including decisions to refuse life-sustaining or life-saving therapy.
One might take the position that there is a duty to protect the older Hannah (assuming she survives the transplant) from the actions of the younger Hannah. This argument assumes the premise that the older and younger Hannah are different people, based upon the presumption that the older girl’s rational and emotional capacity create greater capability for reasoned autonomous choice. Put simply, the older Hannah’s welfare is imperilled by the actions of the less autonomous Hannah and by the decisions of her parents, and so the state must intervene.
This argument is a very limited view of autonomy. Health care professionals are familiar with the situation where Jehovah’s Witness parents refuse a life-saving blood transfusion for their child. In this situation it is recognised that there is a duty to save the child from the consequences of her/his parents’ belief systems or values, beliefs that are potentially harmful and that may not be shared by the child were they able to make an autonomous decision about transfusion. The state must therefore, de facto, take the counter-position that the rational child would choose to have the transfusion and temporarily usurp the family’s authority over the child on the grounds that it is duty bound to protect/care for its citizens.
Hannah’s case is not so simple. In the first instance, the dimensional nature of autonomy in adolescence provides much latitude in questions of autonomous choice in adolescent patients. Capacity emerges not just with age, but with experience of illness.
Hannah and her family have lived with her illness for more than a decade and have made choices based upon their experiences and upon a particular set of values. This represents a form of narrative which has guided them through the most difficult of decisions.
Autonomy is not just about reason, it is also a reflection of the values of the patient, and in this instance, their family, and the rich and complex social relationships that ground, shape and inform these values.
The soundness of a patient’s choice is not simply a matter of rational deliberation, but also one of experience and disposition. State paternalism frequently has a tin ear to such considerations. The tragic Hobson’s choice faced by Hannah and her family is not about probability, it is about the right to die from an illness as one has lived with it.