Until now, there has been no form of advance directive that put these questions squarely in front of the person with early dementia. Last July, I published such a form.
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What if the laws intended to give people more control over dying actually fail many of those who need them most?
“There at the End: Voices from Final Exit Network: A Celebration of 20 Years” shares powerful testimonies from individuals connected to Final Exit Network (FEN), showcasing the organization’s dedication to supporting mentally competent adults suffering from terminal conditions in their right to choose death.
“Does the contract allow you to have access to your own doctors? What is the facility’s position on VSED? If you enter hospice, will they commit to providing adequate pain relief? If you live in a state with MAiD, will the facility cooperate?”
“To be ‘death positive’ doesn’t mean that you are happy about dying.”
“Whose wishes for his medical treatment were we to honor? Those of my father back when he was a healthy, highly functioning geneticist? Or those of the simpler, weakened man my father had become?”
“Your mother didn’t choose a terminal illness. She only chose not to let the disease pick when and how she would die.”
“We live in a culture that’s intensely driven by productivity, accomplishments, and academic achievements. In doing this, we’ve forgotten about our wise ones, the storytellers, the original wisdom keepers, the Elders.”
“The rest is up to you,” he finally said, ending the conversation for good. He didn’t have any more guidance, and certainly no more patience to talk about it. I was surprised. To me, it felt slightly irresponsible to leave all these decisions to other people.
VSED might not be for everyone, but it is the only chance for some to experience an end to unbearable suffering. Done with careful preparation, medical support, and compassionate caregiving, VSED offers a natural end to life.
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