Voluntary Stopping of Eating and Drinking: VSED
For a number of years I have been collecting stories and witness accounts of people who have chosen to die by voluntarily stopping eating and drinking. I am curious about their decision process, the conversations they have with loved ones and doctors, and the support systems they put in place for this way of dying. In my process of learning how to reduce suffering at end of life, I come back to VSED again and again. It is a self directed, humane, and gentle alternative to (medical aid in dying) drug cocktails. In many ways it seems to me to be a path towards a truly non violent death. If you are choosing to step away from a fight with medicalized end-stage disease processes or have reached the last window of opportunity for informed decision making in the face of cognitive decline and wizening, VSED is worth the time to learn about and consider.
Here is a reflection from a friend:
"This was my mom's choice when she'd decided she'd had enough of living with ALS. It was hard for me at first because I associated not eating or drinking with hunger and thirst, but that wasn't what she told me. Her body was ready with her mind and she didn't get hungry or thirsty anymore. It was pretty gentle, certainly compared with aspiration pneumonia."
Here is another personal experience that graciously points out the importance of communicating conscientiously with loved ones, planning well to support a care team that will be present 24/7, and having medical back-up as well.
"My dear friend had her partner of many years send an email to a limited number of close friends that she wanted to see in the first days of her VSED process. The email explained her decision to approach death gently and compassionately. Each of us received a 15-minute visit 'slot' in which we told her what she'd meant to us, and she told us the same. A very loving exchange among dear hearts. About 4-5 days into the process, she only wanted family with her, and they rotated a 24/7 schedule so someone was with her whenever she asked or needed. In that time, she and her partner, grown children and dear grandchildren shared memories, family stories, read and sang to one another. Friends were asked at that stage to hold vigil for her, to light candles and to hold her in our hearts. Around day 8, when her kidneys began to shut down, her pain was managed by a palliative care team, and she slept while music played softly and her beloveds held her hand. If she woke, even briefly, she was looking out the window at her beautifully cultivated gardens. She quietly died on Day 10. This was an exquisite process, mindfully planned and carried out with enormous love and dignity. Such a privilege to be part of it."
Below I've provided curated links to videos and other resources that tell the stories of individuals who have chosen VSED, as told by themselves and their care givers. Since posting this page, a number of people have sent links to other VSED resources (including legal information). I anticipate there will be regular updates here, so come back any time to see what may be new.
If you are thinking about VSED for yourself and would like to tell me your story, I am a good listener and would love to hear about your journey. If you are trying to find the way to tell your family that this is what you want, I would give you time to practice and role play. I can help you find resources and support. And if you have or have found a resource I have not listed please send me an email! Be in touch any time. dinastander15@gmail.com
IN PRINT
Phyllis Shacter courageously shares the first personal story written about Voluntarily Stopping Eating and Drinking (VSED). This memoir and guidebook follows the journey she took with her husband, Alan. Alan chose VSED so he didn’t have to live into the devastating late stages of Alzheimer’s disease. You can hear more about the nitty-gritty of Phyllis and Alan's journey in this January 2023 episode of the Ask a Death Doula Podcast. Doulagivers' Suzanne O'Brien interviews Phyllis Shacter.
FILM & VIDEO
Jamesa's VSED Story
A short video, made in 2021, that sheds light on on Jamesa Noelle's VSED journey.
Not Here By Choice
Phylis Shacter's story of her husband's VSED journey, presented to the Palliative Care Institute.
Rosemary Bowen's Fast
At age 94, Rosemary Bowen hastened her death by voluntarily stopping eating and drinking (VSED) in 2018. For twenty years, Rosemary Bowen had told her family that she would hasten her death when she was no longer able to live independently. Several months after suffering a back injury, she decided that she was ready to die. Rosemary asked her daughter to make this video to show others that VSED could be a sensible end-of-life option.
It’s My Right: The Handmade Death of Herta Sturmann
My mother had congestive heart failure and decided not to submit herself to the indignities of medical intervention. My outspoken mother insisted I film our family as we navigated this fraught process together. My brother and I cared for her round the clock during the ten days it took her to die at home. Handmade is about the tactile and the intimate. It’s an expression of hands connected to heart, and getting back to essentials. This film is about resilient and independent families and individuals, who despite the norms, have the courage to rethink how we die, revolutionizing how best to continue living.
Tomorrow Never Knows
Facing the devastating prognosis of early-onset Alzheimer's disease, Shar's decision, supported by his wife Cynthia, was to have a conscious death rather than live with the disease to its natural end.
Dying Wish ~ the documentary
The story of Dr Michael Miller, retired surgeon and hospice patient with end-stage cancer who chose to stop eating and drinking to hasten and ease his death. www.dyingwishmedia.com
A FIRST PERSON WRITTEN ACCOUNT:
Scott Nearing's dignified death, like his life, was a considered and simple choice.
"A month or two before he died he was sitting at table with us at a meal. Watching us eat he said, "I think I won’t eat anymore." By Helen Nearing
INFORMATION & RESOURCES
Clinical Guidelines for Voluntarily Stopping Eating and Drinking (VSED)
From JPSM: Journal of Pain and Symptom Management NEW IN 2023
https://www.jpsmjournal.com/article/S0885-3924(23)00565-1/fulltext
Hastening Death by Voluntarily Stopping Eating & Drinking
Why Do Some Consider This Option? Why Should They? What Should They Know Before Proceeding? By Judith Schwarz, PhD, RN
VSED Resources Northwest: Comprehensive advice and resources for planning and understanding what one needs to have in place. A site developed by VSED advocates, Palliative Care professionals, and family members of those who have chosen VSED.
End of Life Choices NY: VSED information and resources:
Fasting for the Dead: Living to the end of your own choosing.
A site from Switzerland (Google will translate from German into English for you) offering extensive, publicly accessible documentation on the subject of fasting for death. From palliacura, a non-profit foundation based in Zurich.
From Thaddeus Pope, a trove of scholarly VSED resources and materials, through the lens of Bioethics, Health Law, and Patient Rights, with some international perspective as well:
and...
Patient's Rights Council: VSED FAQ PDF
This document is dated 2011. It does not paint the rosy picture a lot of these other materials do. And, a reasoned review considers opposing arguments. https://www.patientsrightscouncil.org/site/wp-content/uploads/2013/03/VSED_Questions.pdf
If you have or have found a resource I have not listed please send me an email!
Be in touch any time: dinastander15@gmail.com
Thank you for visiting my blog, Signs of Life. I offer services on a sliding fee scale, pay as you can and free if you can't, to any one in need. There is a 'tip hat' button at the bottom of the pages here on my website, donations are most welcome.
This is an EXCELLENT resource. Thank you for compiling it all in one place. Why hasn't the NYT picked this up?! I hope its on the NEDA resource page at the very least. Thank you!!!
Great site. Thanks for doing this. I need to write a blog post about this. It is so important. People need to talk about this end of life decision. It is a mystery to me why people are afraid to discuss it.