VSED: A Good End-of-Life Option for Some
BY BARAK WOLFF, EOLONM BOARD CHAIR
Voluntary Stopping Eating and Drinking, or VSED, is a legal end-of-life option in all states based upon our right to self-determination. It is a choice that has been available for many years, but has gained greater attention and study in recent years…perhaps due in part to the increasing awareness, advocacy, and legal/political engagement surrounding medical aid in dying (MAID). Since many do not have access or do not qualify for MAID in our country, VSED may offer an acceptable alternative for some to have a peaceful, hastened death.
The concept is clear…if a competent person willingly chooses to stop all nutrition and hydration, depending upon their health status and physical condition, they will die from dehydration in a matter of days to weeks. We are learning a lot more about the process and what it takes to do it well for patients, family and for caregivers.
VSED generally requires that the dying person has capacity to make health care decisions, a willingness to be educated about the process, a strong desire and commitment to stay the course, family and friends to assist with planning, preparation, and full support during the entire process (medical, emotional, social, etc).
Experts and advocates are also exploring how VSED can be incorporated into advance directives to provide sufficient clarity ahead of time and allow patients and their surrogates to exercise their right to stop eating and drinking, even after they have lost decisional capacity. Some experts recommend putting these types of explicit directives into a short personal video in addition to the written directive to ensure that an individuals’ wishes are followed. This approach is similar to advance directives that clearly authorize proxy decision-makers the authority to decide to stop medications or treatments that the patient would not have wanted if they could make their own decisions.
If you enter “VSED” in your favorite search engine, you will find a wealth of websites, articles, books, and even several videos about various aspects of voluntary stopping eating and drinking. Our end of life options colleagues in New York, Oregon and Washington State have done excellent work in developing robust overviews, guidance materials, value inventories, FAQs and advance directives, some specifically to support VSED in the future. You can find more about VSED on the EOLONM website here and more about advance care planning and directives here. Likewise, Compassion & Choices has excellent materials and articles on their website including a Dementia Values & Priorities Tool to help you make healthcare decisions based on your values and preferences, this youtube video about VSED, and a terrific VSED poster (see Figure I above).
Last year a major text was published by Oxford Press entitled, Voluntary Stopping Eating and Drinking, A Compassionate, Widely Available Option for Hastening Death. The well-known lead authors include palliative care physician Timothy Quill, bio-ethicist Paul Menzel, legal expert Thaddeus Pope and nurse clinician and educator Judith Schwarz from End of Life Choices New York. This well documented text uses illustrative cases to highlight the various medical, legal, ethical, and psycho-social aspects of VSED…both for those who have capacity and for those who choose this path to clearly document their wishes for when they will lose capacity at some point. Although not fully tested in the courts there are numerous examples where these Advance Directives for Stopping Eating and Drinking have led to peaceful, hastened deaths.
For those who like to get a first hand glimpse into what VSED may actually be like, there is a beautifully produced video called Dying Wish that was filmed in Boulder, CO around 2008. Dying Wish is a 30-minute documentary about hospice patient, Dr. Michael Miller, an eighty-year old, retired surgeon with end-stage cancer who chooses to stop eating and drinking in order not to prolong his dying process, to ease his suffering and to die with grace, fully supported by his family.
And finally, VSED has particular relevance to those with a family history of dementia or find themselves in the early stages when they still have capacity to think about and communicate what they want in the future. For those who are clear they want to avoid the later stages of dementia – forgetting who they have been, failing to recognize their loved ones, or losing the ability to feed and toilet themselves – they can take affirmative action where they retain a measure of control until the end. They can hasten their death through their own volition while they still have capacity…either to organize a VSED effort when the time is right and/or create a specific Dementia Advance Directive that clearly states when and how food and fluids are to be withheld to hasten death.
Kate Christie is a writer whose mother Jane did well for a number of years with her early dementia. But since both her mother and grandmother had suffered long and difficult deaths with dementia, Jane had a good idea of what was ahead and was determined not to go down that road. She was “willing to give up good days to avoid bad years”. She was crystal clear with her husband, daughter, sisters, friends, healthcare providers, etc. that she was not going to slip into anonymity and endure a long, slow death in a memory unit. Starting in about 2017 and ending with her peaceful VSED death in early 2020, “The VSED Handbook” is a loving, thoughtful and beautifully written 80+ page account of their journey, emphasizing the learning, planning, and organizing to support Jane’s final days. Their lessons learned and clear, “how-to” guidance are a must read and resource for all those interested in understanding this end-of-life option for themselves or to assist others.
Around the State with EOLONM
Santa Fe – Annual Caregiver Day
The Memory Care Alliance hosted their Annual Caregiver Day at the Santa Fe Community College on April 9, 2022. The event draws caregivers, families and healthcare providers to enjoy a day of education, resources and community awareness about Alzheimer’s and dementia care. This is an excellent community event that offers helpful resources and sessions on end-of-life topics like “Understanding Palliative Care,” “Grief, Loss , and Caregiving,” and “The Legal/Financial Needs Every Caregiver Must Prepare For.” EOLONM Santa Fe-based volunteers Randi Lowenthal, Jay Geiger, and Barak Wolff answered caregiver’s questions and provided end-of-life resources at the EOLONM information table.
Las Cruces – Southern New Mexico Giving Day
On April 22, 2022, the Community Foundation of Southern New Mexico (SNMGD) hosted a fundraiser for community nonprofit organizations. Over 385 donors participated, $60,941 generated, and 44 organizations who serve southern NM, including End of Life Options NM, benefited.
As part of our involvement in SNMGD, EOLONM was entered into drawings to win cash prizes to add to their donations. A fun way to draw attention to this philanthropic event, the drawings included matching funds for things like $500 to the first organization to get donations on Giving Day, $200 for organizations that conduct social media outreach by posting about the day on their social media page, or $200 for Organizational Impact Giving Total for the organization that raised the most money. EOLONM won the drawing for Southern New Mexico Giving Day Lunch Event, which resulted in total proceeds of $400 to EOLONM during Southern New Mexico Giving Day.
Silver City – Gila Earth Day
After a two-year pandemic hiatus, community members gathered in Gough Park on April 23, 2022 from 10 am – 2 pm with lots of organizations and vendors present and many activities to take part in. EOLONM hosted an information table in the park along with more than 50 other organizations. Though it was quite a windy day, there were more than 150 people who stopped by our booth and some 30 more who signed up for our mailing list to receive the EOLONM newsletter. Volunteers Adrienne Dare, Siri Dharma Khalsa, Nancy Cliff, Joanne DeMichele, and Lisa Jimenez shared information with the public about end-of-life options and advance healthcare planning.
Albuquerque – New Mexico Nurse Practitioner Council, Spring Conference 2022
EOLONM volunteers showed up in a big way to the largest gathering of nurse practitioners in the state during their Spring 2022 conference entitled: Nurse Practitioners: Caring for New Mexico. The event took place at the Hotel Albuquerque in Old Town from April 28-30. Volunteers Jan Wilson, Judith Harris, Paulette Pollem, Jane Westbrook, Anne O’Neil, Patsy Nelson, Carol Glassheim, Aroop Mangalik, Hunter Marshall, Torie Grass, and Revathi A-Davidson staffed an EOLONM information booth throughout the three day clinical educational conference.
EOLONM volunteers Hunter Marshall, RN and soon-to-be graduate from the University of New Mexico’s Family Nurse Practitioner Program, along with UNM Law Professor Emeritus Rob Schwartz gave a presentation to more than 50 conference attendees on Saturday morning April 30th. The presentation provided an update on the Elizabeth Whitefield End-of-Life Options Act that was passed last year and went into effect on June 18, 2021.
Humanist Society of New Mexico
May 28, 2022 – Jan Wilson, EOLONM volunteer, will be speaking at a meeting of the Humanist Society of New Mexico. The group meets at 10:00 a.m. at the Special Collections Public Library in Albuquerque at 423 Central Ave NE. Jan will speak about advance healthcare planning and the options one has at the end of life.
Albuquerque PrideFest 2022
June 10-11, 2022 – EOLONM will host a information table at this community event. There are many events scheduled during Pride week, including a candlelight vigil, a parade and the Main Event at Expo NM that includes music, dance, art, and activities for children. Join EOLONM on June 11th at Expo NM (state fairgrounds) and celebrate the diversity of our community at PrideFest.