There is much that is good to be said about Dominic Wilkinson’s new book Death or Disability? The ‘Carmentis Machine’ and decision-making for critically ill children.
My favourite part of the book is how Dominic confronts head on the issue of the best interests of the family in relation to care, and withdrawal of medical treatment, in newborns.
This is one of the most neglected areas of bioethics.
On the one hand, there is a rhetoric that goes we are all social beings, we are socially connected, not atomistic individuals, the community matters, etc etc The usual communitarian mantra.
Then there is the alleged overriding legal and medical ethical principle of the best interests of the patient, which is the newborn infant in the case of neonatal medicine. The sole basis of the provision of medical treatment is meant to be to promote the best interests of the patient, and medicine should never be used to harm the patient, etc etc. The usual medical ethics and law mantra.
And then there is real life. The interests of the parents, siblings, other relatives, friends, society etc can all diverge from the interests of the patient, even a newborn infant. How are these to be weighed? The hard edged reality is that the interests of families and especially parents do play a role in clinical decision making, and even in cases to withdraw life-prolonging medical treatment. (For example, in one survey 90% of American intensivists believed that family interests should be included in decisions for incompetent patients. )
In ‘Death or Disability?’, Dominic reaches several striking conclusions. We should certainly give some weight to the interests of the family for decisions about children. This is most likely to sway our decisions in relatively borderline cases, where the net benefit or harm to the child is small. But he also argues that the amount of weight will vary depending on the age of the child, and on the availability of resources. We should give greater weight to the wishes of parents for newborn infants than for an older child. And we should give greater weight again in societies with few resources, where the burden of caregiving is going to fall heavily on families, and where health resources are seriously limited.
It is time for an honest, open and rational approach to these kinds of dilemmas. Dominic does just that.
It is interesting, isn’t it, that two of the first people to make this kind of argument which takes seriously the social costs on the community (the other is Camosy’s recent book “Too Expensive to Treat?”) are Roman Catholics. Much secular bioethics in the West seems stuck an Enlightenment anthropology which, as Julian notes, imagines that the good of the patient can be abstracted from the good of the community.
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