How a triple-amputee doctor is helping to change the way we die

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My grandmother died a few days ago, after several years of progressive vascular dementia due to strokes. She was a nurse, and did not want to spend her last year in a nursing home. She had planned to die on her own terms, but she had the first stroke in public and didn’t have her paperwork on file with the hospital where EMS took her. After that event, she was never again able to make the decision and had to endure until her body finally gave up.

Hospice has been a blessing for my family, for the members who were willing to use it. But most of the process of dying is a process of advocacy for the right to refuse: the right to refuse antibiotics, to refuse nutrition, to refuse interventions and tests. Does an MRI help us, as advocates and caregivers, understand what is happening in a head or abdomen? Certainly. But is it worth three days of exhaustion and confusion and anxiety? Rarely. And that is perhaps the hardest thing to learn as a caregiver – to interpret the written directions and stand for comfort and peace, and against what cannot possibly help and cannot contribute to that comfort.

I hope we can clone Zen Hospice. It sounds ideal.


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