Continuing my focus on the dying part of dying, particularly the possibility of dying through a long, extended debilitation with loss of ability to direct my own care.
This could be the case in Alzheimer’s and other dementias, serious strokes and cerebral vascular disorders and late stages of Parkinson’s and other similar illnesses.
What are the possibilities, the ways to die well?

It is possible to create directives that refuse all medical treatment beyond palliative care.
My dear friend Charles died quietly of pneumonia at age 95, as per his instructions refusing antibiotics.
His health had declined slowly, but he had been alert, active and cheerful even though blind and wheelchair bound. He liked to go to museums and galleries and have other people tell him about the paintings!
It had come to a point where the rest of his life would have been in bed, intubated, and it was clear this was the point at which he was ready to die. His family and doctor followed his instructions.

In some places physician assisted death is legal. I have no personal connection with people who have passed this way, but various essays about it may be found easily.

Historically and currently, some people have taken their lives by whatever means they could in the face of extended illness. Deaths like this do not usually allow for gentle, loving farewells to family and friends.

VSED, especially as practiced by my friend Karen, can allow for a loving, meaningful end of life.
_Herself to the End_ by Fran Volkmann tells the story of her friend’s decision to die by VSED. I found this to be a very helpful introduction to the topic.

VSED requires the cognitive capacity to understand, plan and carry through the practice of not eating or drinking. Ideally it requires a focused, loving caring support group of friends and family. It is not an option for someone with advanced dementia.

Finally, there is the Minimal Comfort Feeding Protocol. The basic intention is to only feed a patient with advanced dementia if that person wants to eat, not to insist on regular meals, and not to assertively spoon feed or tube feed a person. This practice as a defined protocol is undergoing development.

[Some people in the right-to-life movements are opposed to this practice, they feel that people with advanced dementias should be kept alive as long as possible.
I believe Karen was influenced in her choice of VSED by witnessing a neighbor who spent hours a day feeding his wife. She did not know she was being fed and the food would just fall from her mouth, but he would keep trying until she eventually swallowed.]

I am grateful for the opportunity to think through this publicly, to hear your responses and advance my understanding.
I’ll be updating my End of Life documents to be as clear as possible in case of the need for difficult decisions on my behalf.

Please continue to share your thoughts!

With Love,
Ed