The VSED Handbook

“VSED is a marathon, not a sprint, and like a marathon, takes lots of preparation.”

 -Kate Christie

Kate Christie’s The VSED Handbook, a Practical Guide to Voluntarily Stopping Eating and Drinking is a timely addition to an ever-growing body of literature and increasing discussions about end-of-life choice.  End of Life Choices California receives numerous queries about VSED and it is one of the most viewed pages on our website.

The VSED Handbook, published following the VSED death of the author’s mother, is a guide to how to control the timing of one’s death by voluntarily stopping eating and drinking all foods and fluids. VSED, as the author explains, is an age-old method of dying, legal anywhere in the U.S. It is used mostly by elderly, frail individuals suffering from a poor quality of life, who don’t have a 6 month terminal diagnosis and are not eligible for hospice care or medical aid in dying (MAiD), if legal in their state. It’s the ultimate act of self-determination.

Immediately, I found many parallels and useful tips that can be offered to our clients, most of whom are exploring all end-of-life options. Here are just a few:

 

  • Counseling clients and their family members regarding the individual’s right to choose. Helping the team come to terms with the fact that their loved one understands they are giving up some possible good days in order to avoid bad days, weeks, or months, due to the unrelenting progressive nature of their disease.
  • The author emphasizes there are numerous ways to plan ahead and prepare well, including arranging for 24 hour in-person support for the duration.
  • Creating the atmosphere, preparing the physical space where the person will ultimately die. Having a choice, with near-certain dates, gives family and friends the opportunity to connect deeply with their loved one, and offer heartfelt goodbyes.
VSED Handbook, Kate Christie

Again, Kate emphasizes for us, dear readers, that individuals choosing to use VSED are making the choice to leave this world a little early, on their own terms, due to the reality that their illness will cause them to experience progressive losses of their selves, their personhood, their autonomy, and their dignity, and they are choosing to avoid these losses.

I highly recommend The VSED Handbook to anyone interested in learning more about this end-of-life option. This book is a love story, a guide, a reality check, and ultimately, an entire tool box both for the individual who is considering using VSED and his or her  loved ones.

If you, or someone you know, are interested in learning more about VSED, please call 760-636-8009 or contact us here. One of our highly trained volunteers will be able to discuss this option with you and answer all your questions. To learn more about this excellent resource on our website, click here.

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Lynne Calkins is a founding director and current board member of End of Life Choices California.  She is also honored to serve as an active client volunteer. She developed EOLCCA’s client services volunteer program, launched EOLCCA’s MAiD Bereavement Group, and is a frequent speaker to a wide variety of audiences on end-of-life options. She campaigned vigorously for the passage of California’s End of Life Option Act in 2015 and is eternally grateful for the legacy of Brittany Maynard that helped make this law a reality for all Californians. She is passionate about the individual’s right to choose a peaceful death at the end of life.

EOLCCA supports a strong team of experienced volunteers throughout the state, ready to help anyone, anywhere in California with information and support regarding all end-of-life planning and choices, including aid in dying through the California End of Life Option Act. You can find comprehensive information on our user-friendly website. EOLCCA is a 501(c)(3) nonprofit organization, and we rely on donations from individuals and foundations to enable us to offer these services at no charge to our clients. To support our work, find volunteer opportunities, or request an educational presentation for your group, please visit ways to help.  Thank you!

Marin Section on Aging: End of Life Choices California Presentation

Sept 21, 2023 at 10am.  Live Presentation at The Redwoods.  Private meeting.

Susan Gess, Volunteer End of Life Choices California (EOLCCA), will introduce the organization and highlight the in-depth information available on the website as well as the personal services provided by EOLCCA to include personal phone support on all end of life topics.  Presentation will also include options available to those at the end of life including of Medical Aid in Dying (MAiD).

For more information contact:  Rita Casey, Speaker@endoflifechoicesca.org


End of Life Choices CaliforniaEnd of Life Choices California’s mission is to provide Californians the information and support to successfully navigate their legal end-of-life options.  Relevant topics include Advance Care Planning; the California End of Life Option Act (EOLA); eligibility requirements for Medical Aid in Dying (MAiD); and Voluntary Stopping Eating and Drinking (VSED)–a legal option in all 50 states. Our volunteers are very knowledgeable about both hospice and palliative care and can explain the differences between the two services.

Be sure to check our Resources page for Q/A; information on books, films, and organizations; sign up for our blog; see upcoming events; and so much more.  To request a speaker for your group or organization, click here.

What actually happens during a MAID death.

As an End of Life Choices California (EOLCCA) bedside client volunteer and retired medical professional, I’ve attended both medically-assisted deaths (MAID) and non-MAID deaths. Most people who qualify choose MAID because they want some control over how and when they die once they are declared terminally ill. Their diseases have already taken so much control away from them.

Sometimes people never even take the MAID prescription but feel comforted by knowing they have it in case of need. Other times the disease progresses too quickly, and they lose the capacity to ingest the medication themselves as the law requires.  We advise people not to wait until the last moment to start the process of making their requests for MAID from two doctors. It can take a while to find a prescribing doctor if your physician won’t prescribe (or participate in MAID). Once prescribed, the medication must be prepared by a special compounding pharmacy and it could take up to a week to be prepared and delivered.

Our client volunteers are trained to work with people and their loved ones prior to ingestion to prepare them for the process, so they feel safe in deciding to just have family/friends present if that is their wish.  However, if needed, we are honored to be there the day they take their medication.

peaceful river scene
Questions

We answer many questions in the period leading up to the day of death and on that day itself.
As questions arise, we answer them all. 
Typical questions include:

  • What if the medications don’t work?
    Answer: The MAID medications prescribed by the doctor are lethal and are intended to be fully effective. With the client and their family, we thoroughly review the medications and procedures, and confirm that the client still wishes to take them on the day of death. 
  • How long will it take to die?
    Answer: Within five to ten minutes after ingestion, the patient will fall into a deep sleep and then into a coma and be unaware of anything else. It will take between 30 minutes and possibly up to four hours or so for the patient’s heart to stop beating. The patient’s loved ones may hear a few noisy breaths as the body shuts down. We will be there supporting the family and loved ones during that period and can help explain what may be happening as the patient passes away. 
  • Will patients soil the bed after ingestion or when they die?
    Answer: No, there is no involuntary release of body fluids during this process.
Being present

Most people prefer having two of our trained client volunteers present on the day they choose to take the medication. Emotions can be intense when someone is about to die, and it can help to turn the mechanics of preparation over to an experienced neutral person familiar with the process. It allows everyone else the opportunity to concentrate solely on their person and not be distracted by monitoring timing intervals between ingestion of the anti-nausea drugs and measuring and mixing the final medications, while still being present for their loved one. 

Experiences are as varied as individuals and families can be. Some people have a spiritual advisor offer a prayer or blessing. I’ve seen very quiet deaths where the volunteers withdraw to another room, leaving the group or family member alone at their request. I’ve been at deaths where the TV is on and everyone is reserved and not saying much. EOLCCA volunteers try to support their clients to have the death they want. Often the dying person is so ready for death they say things like, “Let’s get this show on the road.” Or, “I’m tired; I want to do this now.”

Mostly I’ve witnessed profound expressions of love such as: adult children and friends entwined with their dying person or stroking them tenderly, people singing to the dying, beloved pets snuggling next to their owners, last minute forgiveness amongst divisive family members, an aged  taciturn father apologizing to his middle-aged son for being too hard on him, and bikers regaling each other with tales of their escapades. The common threads are deep sentiments of love towards a cherished dying person.  

Dying man with wife
An honor

Afterwards, those present speak of grief, of thankfulness at being asked to be there for such an intimate experience, and recount stories about their now deceased loved one. EOLCCA has formed an online Bereavement Group specifically for family members involved in a MAID death, and we are able to offer them this option to help process their grieving.

All of EOLCCA’s 34 active volunteers consider it a privilege and an honor to help terminally-ill people, whether over the phone or in person, to have as much control as possible over when, with whom, and where they will die.

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Cynthia Tuttelman, an EOLCCA Client Volunteer, is a retired family physician and quilter living in Petaluma.

EOLCCA supports a strong team of experienced volunteers throughout the state, ready to help anyone, anywhere in California free of charge with information and support regarding all end-of-life planning and choices, including aid in dying through the California End of Life Option Act. You can find comprehensive information on our user-friendly website. To support our work, or request an educational presentation, please visit ways to help.  Thank you for your support!