Sharing VSED Resources In My Community

(Nancy Simmers is a Death Doula, Registered Nurse, Ordained Interfaith Minister, and Co-Founder of VSED Resources Northwest. This is Part Two of a two-part series.)

In 2019, three community women asked to meet with me about a compelling community education concern. The spouses of these women had all struggled to use the VSED end-of-life option because our county’s only hospital, and associated hospice program, had religious affiliations and, therefore, was unable to support VSED. These women were solidly committed to educate their community about VSED’s viability as an end-of-life choice. We defined our mission as “Striving to increase community awareness of VSED as a conscious end-of-life choice and to further its availability and access”. The vision statement we created states, “Planning for a compassionate death that reflects one’s priorities, values, and beliefs are important. Choices are also important – and available. Our group aims to share information about VSED so that individuals who might not qualify for Death with Dignity can make informed choices and plans. VSED might not be for everyone, but it is the only chance for some to experience an end to unbearable suffering. Done with careful preparation, medical support, and compassionate caregiving, VSED offers a natural end to life.”

A New Non-Profit and Website

Our small group, later named “VSED Resources Northwest”, grew into a larger group of dedicated individuals, representing a variety of community agencies that advocate for aging well in Whatcom County, including speaking enthusiastically about end-of-life choice. When the COVID pandemic restricted our ability to do in-person presentations, we created a website (https://VSEDresources.com) that includes the latest information about VSED as well as videos and stories from people whose family members have chosen VSED. In addition, the documents featured on the website help people detail the realities of VSED, the preparation necessary for it, and a realistic understanding of the whole process.

Provision of Educational Resources

VSED Resources Northwest remains an eclectic group; but all of us believe that a compassionate death is a human right. We are committed to furthering this ideal both in our local community and beyond. As an educational organization, VESD Resources Northwest (VRNW) has collaborated with Western Washington University’s Palliative Care Institute in offering webinars and seminars for local health care providers and community members concerning end-of-life issues. Independently, we’ve given presentations to our local Death Café, county senior centers, hospice staff, and staff for long-term care facilities. Our website has attracted attention from all over the country and we have received requests for consultations from almost every state in the US, Canada, and even international contacts. Death Doula training groups have asked us for VSED presentations, and recently we presented at a Death Doula training sponsored by Final Exit Network.

Outreach and Collaboration

For the past three years, I have served as Coordinator of this non-profit. Because we are an educational resource, VRNW collaborates with state and local organizations that promote healthy aging as well as direct patient care and training. For instance, End of Life Washington has a long-standing relationship with us since they, too, educate about VSED for individuals who do not meet the qualifications to use Washington State’s Medical Aid in Dying Law.  We also collaborate with a local Holistic End-of-Life Care Collective which is a group of Death Doulas, wholistic medical providers, personal caregivers, and organizations who serve individuals as they age and prepare for life’s end. As founding members of this Collective, my doula partner and I are able to serve as death doulas for individuals choosing to VSED, and we help train an ever-growing group of local caregivers and doulas who mentor with us for specific VSED knowledge and skills.

The VSED Handbook

One of our members, a professional writer, recently published a short, practical handbook about VSED. In it, she recounts the experience of her mother who chose to use VSED when her symptoms of Alzheimer’s developed to the extent that she feared she would lose her capacity to use this choice. The book details the preparation this family undertook in support of her mother – medically, legally, financially – and realistically presents the challenges and grief, unexpected surprises and sweet moments of this family’s experience. The VSED Handbook: A Practical Guide to Voluntarily Stopping Eating and Drinking by Kate Christie, is available in eBook or paperback from Amazon or from Village Books in Bellingham, WA. This book offers a concise, compassionate guide to planning for and carrying out VSED. Each copy purchased by clicking to Amazon from our website earns VSED Resources Northwest a small commission that helps support our projects and goals. (Editor’s note — to help support VRNW with their Amazon commission, click here to go to the resources page on their website, then click on the link to the book, found within the first bullet point.)

VRNW as a Non-Profit

As an educational resource, VRNW is exclusively funded by donations. We were extremely fortunate to be gifted with a “nest egg” from the family of Jane Vander Weyden, who chose to VSED and died in February 2020. We are very grateful, too, to have a local foundation, Chuckanut Health Foundation serve as our fiscal sponsor, thus making it possible for the donations we receive to be tax-deductible. As a small, neophyte NPO, our major expenses include simple maintenance items like website upkeep, phone expenses, postage, and printing. This past year, we helped sponsor webinars and student scholarships with our affiliated groups. We’re putting into place plans to create a unique fund to be used to help pay for caregivers when families cannot afford that expense.

Medical Support with Clinical Guidelines

During the past five years, information about VSED has increased throughout the US, particularly within the 12 states that have a Medical Aid in Dying (MAiD) laws. However, lack of medical support for VSED – or the hesitancy to support it – has become more apparent, especially in states that do not support MAiD. Having clinical support and hospice support for VSED is such a critical piece in the preparation for VSED, and clinicians, because of the lack of clinical guidelines, have historically been hesitant to support patients who choose this end-of-life choice.

Several professional groups are in the process of remedying that situation. For the past six months, I have been involved with a work group charged with writing clinical guidelines for VSED. Members of the group also include authors of the recently published book, Voluntarily Stopping Eating and Drinking: A Compassionate, Widely Available Option for Hastening Death. The initial draft of the Clinical Guidelines for VSED for Persons with Decision Marking Capacity is now complete and has been shared for vetting with other nationally recognized clinicians. Our hope is that these new Clinical Guidelines for Patients with Decision Making Capacity will be published by 2023 and therefore be available nationally for all clinicians, palliative care providers, oncologists, death doulas, and hospice programs. In addition to other means of distribution, the Clinical Guidelines will be downloadable from the VSED Resources Northwest website.

Outreach to Underserved Populations

VSED Resources Northwest provides presentations, phone, in-person, and written consultations, brochures and cards, exhibits, and virtual resources as recounted previously. We are painfully aware that information about end-of-life choices and care is mostly limited to people who can afford to access our health care system. People who must resort to the emergency room for their health care needs and people who lack health care because of residence, race, ethnicity, gender designation, poverty, isolation, or mental status are least likely to have the opportunity to consider their end-of-life options, or to access the care they need to have a dignified death that is attended with caring and compassion. Our mission includes acknowledging that these disenfranchised people are our neighbors, and our aim is to make connections so we can better understand their needs and avenues of connection and service.

My Learning

I learn from every person who requests my assistance at their end-of-life. I look forward to a future of sharing and learning with individuals, their families, and the caregivers who help support them. As death doulas, caregivers, palliative care clinicians, and hospice providers acknowledge one another’s roles and mutually collaborate, everyone will benefit. The specters of a lingering, painful death or a sudden, catastrophic health crisis will perhaps not be erased from our collective psyche, but our fears can be eased as we talk about death and plan for it. As we acknowledge the certainty of death as a predictable stage of life, choices about how we die will be easier to consider and choose. The stigma of hastening one’s death, by self-determined ending of suffering through Medical Aid in Dying or through VSED will be compassionately alleviated as personal choice is honored.

For information on VSED Resources Northwest, visit https://vsedresources.com/.

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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers
who support mentally competent adults as they navigate their end-of-life journey.
Established in 2004, FEN seeks to educate qualified individuals in practical,
peaceful ways to end their lives, offer a compassionate bedside presence and defend
a person’s right to choose. For more information, go to www.finalexitnetwork.org.

Payments and donations are tax deductible to the full extent allowed by law.
Final Exit Network is a 501(c)3 nonprofit organization.