As a reminder I’ll be interviewed tomorrow at 2:00 P.M. PST (5:00 P.M. EST) by Cheryl Jones on “Good Grief”. Here is a description of the episode. A link you can use tomorrow is below. I hope everyone is able to listen to it live. Thank you!

https://www.voiceamerica.com/show/2264

Phyllis Shacter’s husband made a series of radical choices about how his life would end. When he received two life limiting diagnoses within six weeks of each other, Alzheimers and cancer, he refused cancer treatment and employed natural methods instead. He planned and participated in his own funeral and followed what he believed was best for him, choosing to stop eating and drinking before he was unable to consciously decide how his life would end. Throughout all of these experiences and decisions, he had a supporter and advocate in his wife Phyllis. Understanding the choices he was making, she stood as a pillar to his right to end life in the way that was right for him. He left her with a mission; by sharing his story, she would contribute to the conversation on end of life options. Powered by her love of him and the peace and beauty he felt at the end of his life, she speaks powerfully for taking our lives in our own hands and fully exploring what is best for each of us.

Legality Surrounding the Choice to VSED

Death and dying feels like a messy matter at times. If we haven’t come to terms with our mortality, how can we even begin to think about and exercise our choices.

It is complicated and often intense to think ahead of time about how we want to die. Considering our choices requires deep introspection. For example, VSED is a complicated choice and it requires sufficient support. First the individual has to determine if it is right for him or her. Then loved ones have to support the individual’s decision. It takes time and effort to communicate with medical and legal people to ensure that everything will be carried out properly.

In this blog, I want to focus on the legal issues. I highly recommend that someone who is considering VSED consults with an elder law attorney. Do this well in advance. Not all elder law attorneys will be comfortable with or knowledgeable about VSED. We were fortunate to have a forward thinking elder law attorney. She knew much more about VSED than an estate planning attorney or a family law attorney.

The elder attorney will draw up documents to ensure that your wishes are followed and are within the realm of the law. In our case, my husband had his Health Directive that was filled out and updated as needed. Because he had Alzheimer’s and was still mentally competent, he filled out the Alzheimer’s Advance Mental Health Directive. This can be found on the End of Life Washington website. It is excellent, and it often requires the assistance of an elder law attorney.

My husband was certain that he wanted to avoid ever living in a dementia facility, but he only had so much control. If he landed in a dementia facility, however, we had already talked about our financial assets with our elder law attorney so that there would be money to take care of him and also money left for me. It can be very complicated. The Alzheimer’s Directive also covers decisions involving day to day choices about where someone would like to be treated and cared for. Different scenarios and options are covered in this fine Directive.

Here is a link to the Alzheimer’s Disease and Dementia Mental Health Advance Directive.

Many people ask me about the legality of VSED. Yes, it is a legal option in the United States. I strongly encourage you to look at the white paper written by Thaddeus Pope and Lindsey Anderson called “Voluntarily  Stopping Eating and Drinking: A Legal Treatment Option at the End of Life. It was this document that convinced my husband to VSED.

Another document that our elder law attorney drew up was a document to eliminate risk to the caregivers, the doctor and myself. I also filled out a similar document. Both were witnessed and notarized.

So, there is lots to think about. I encourage you to read my book, Choosing to Die. All the details are covered in the book. It is both a memoir and a guidebook.

Being An Advocate For VSED For a Loved One

The very good news is that law will uphold a right to VSED in the context of persons stricken with fatal or serious degenerative maladies.

There will continue to be grey areas and varying perspectives about whether or not a Health Directive, when written when someone is healthy, will hold up and be followed when someone is in the late stages of dementia and is no longer mentally competent. This is a good article exploring this issue. Certainly at this time, I would not rely on a Health Directive to dictate whether or not a person is fed in the late stages of dementia. 

Maybe the issue is bigger and deeper. Maybe the issue is getting clear about the kind of death we want to have. This is something that my husband spent a lot of energy on before he made his decision to voluntarily stop eating and drinking. His demonstration became his legacy to me. It motivated me to look closely at my own thoughts about death and death, and my fears surrounding this. I go into depth of my journey through grief on my website. In my own way, I am already preparing myself emotionally for my death. And I expect to live many more good years! Rather than avoiding this charged issue, I’ve begun to explore it myself. This doesn’t mean that I won’t change my mind. But increasing clarity is bringing me more peace of mind. There are no easy answers. This is deeply personal.

Can the Right to Stop Eating and Drinking be Exercised via a Surrogate Acting Pursuant to an Advance Instruction?