Human Exceptionalism

Many “Locked In” People Happy

One of the terrible things about euthanasia and food and fluids cases, is the readiness by which many are willing to make despairing totally disabled people dead, that is, people who are fully conscious but completely paralyzed.  Indeed, recently Belgian doctors euthanized such a woman, and then a different set of doctors harvested her organs.  We have also had bioethicists, who once said dehydration should be for people who are unconscious, turn around and say that locked in patients have an even greater claim to withholding food and fluids since they are aware of their helplessness.

But this readiness to believe such people can never enjoy their lives is belied by research indicating that most locked in patients are happy. From the story:

Taking into account the possible methodological challenges and limitations of QoL research, especially when dealing with LIS patients, our data show that a non-negligible group of chronic LIS survivors self-report a meaningful life and their demands for euthanasia are surprisingly infrequent. It is important to stress the discussed possible biases in our study. The observed results may hence not be representative of chronic LIS patients in general. It should also be noted that given the dependence of LIS participants on the help of a caregiver for communication of their answers, social desirability might have confounded patients’ responses. Nevertheless, in our view, these results are important as healthy individuals and medical professionals might assume that the comfort of a LIS patient is so limited that it is not worth living

Recall, Jean-Dominique Bauby wrote the book The Diving Bell and the Butterfly while locked in.  He thought his life was very worth living.

Suicidal people who are in a locked in state should be offered suicide prevention services as we do most suicidal people.  That many would instead say, “Sure, go ahead. I would too,” reflects our own fears and prejudices, and an (unintended) abandonment of people who might otherwise be helped to get past the darkness and back into the light.

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