Deconstructing autonomy: a euthanasia advocate in perplexity

Cross-posted from BioEdge

It could be a novel or a movie, but it’s real life: when her own husband suddenly becomes a quadriplegic, a bioethicist famous for her advocacy of legalised voluntary euthanasia keeps him alive even though he wants to die. Margaret Pabst Battin, a philosopher at the University of Utah, has spent nearly five years caring for her disabled husband, Brooke Hopkins, an English scholar.

On July 28 last year, in a particularly bad bout of constant pain he dictated the following letter:

“For many years since the accident I have been motivated by a deep will to live and to contribute to the benefit of others in my small way. I think I have done that. And I am proud of it. But as I have told Peggy over the past few months, I knew that I would reach a limit to what I could do. And I have arrived at the limit over the past couple of weeks.”

After that, Peggy began to prepare for his death. Then one night he began to go downhill. He was delirious and uncomfortable. But Peggy did not allow nature to take its course, as her husband wanted. As Robin Marantz Henig writes in the New York Times, “she decided to ignore the ‘Final Letter’.  She went upstairs, got dressed and, along with the caregiver on duty, put Brooke into the wheelchair-accessible van in the driveway and drove him to the emergency room.”

This fascinating article highlights the difficulty of knowing exactly what “autonomy” and “informed consent” really mean. Hopkins actually enjoys life, despite his limitations and dependency. Even a feeding tube, which is often used as an example of terminal indignity, she says in her eloquent blog, is  “liberating, not painful, not degrading”.

Paradoxically, though, Battin continues her advocacy for euthanasia. She testified for Gloria Taylor, a Canadian woman who wanted to end her life legally in Canada in 2011, and for Marie Fleming, an Irishwoman with a similar wish to die, last year. But if her beloved husband is any example, it seems that patients who are loved and cared for have a fierce and constant desire to live. There are moments of despair when death seems preferable, but the moment of actually choosing death never seems to arrive.

The article, and the video above, raise many questions. If autonomy is such a clear principle, why doesn’t it work here? If it doesn’t work, is it coherent? If it is not coherent, should it be discarded? This is a fascinating article, essential reading for anyone interested in the euthanasia debate.

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