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In the past two days I have by coincidence watched and read two contrasting pieces on ethics and the refusal of medical treatment. One moving, the other horrifying.

The first, was the documentary The Conjoined Twins: An Impossible Decision, a programme considerably more nuanced than its title, although the second part of the title was also proved very much true. This followed a father, medical team, and hospital ethics committee as they considered the right course of action in the case of conjoined twins Marieme and Ndeye. It was clear that everyone involved really cared, and ultimately, that there was no simple decision available, but that there was more than one right one. The girls' father, Ibrahima Ndiaye, was, no doubt like many parents if they were in that position, opposed to separation given that it would doom one of the children before she would otherwise 'naturally' die; the medical team felt that if he wanted it, it would have been ethically acceptable to operate, but that not to operate was also an ethical choice given the medical evidence, and that the case for separation* couldn’t be considered strong enough that there would be any justification for the courts to override parental wish. One of the things that I felt the programme did well was show that with the benefits of the fact that parents are now much more involved and consulted in children’s medical care than they once were, this comes with its own pressures and downsides, of needing to feel you have made the right decision not only ‘now’, but in the future. It was a good example of a lot of people working together to try to find a place that was inevitably going to be sad, but in which it was understood that everything had been considered, everyone had been heard, and people's interests honestly considered.

In contrast, if you wanted a demonstration of why the courts should be able to require medical treatment of a child against a parent’s will, you couldn’t find a more powerful example than this Long Read in the Guardian, although this details the decision of an adult rather than a decision on behalf of a child.

Cut for the rant, and some brief mentions of unpleasant medical detail. ( Read more... )