(Nancy Simmers is a Death Doula, Registered Nurse, Ordained Interfaith Minister, and Co-Founder of VSED Resources Northwest. This is Part One of a two-part series.)
Few of us could miss hearing about aspects of the “Death Positive” movement that has gained momentum over the past decade. As we Baby Boomers roll into elderhood, we are moving the dial, so to speak, about death and dying in the same way that fifty years ago we insisted birth was a natural physiological experience that deserved to be honored as such with “hands-off” to its medicalization. A member of that generation, I’ve played a part in that evolution. Though I have had a nursing career for the past 40 years, I now choose to use my nursing knowledge not to “care take” people as they prepare to die, but to use my accumulated experiences to be a more compassionate and informed guide and companion to the individuals and families with whom I work. This article is a story of how I have grown into the role of a Death Doula or End of Life Guide, and how I have joined with others to humanize dying and prepare for the very natural process of saying goodbye to the body, sometimes even by choosing a means to end suffering and hasten death.
Why I Do This Work
As a death doula, my greatest satisfaction and learning comes from companioning individuals at the end of life. It is an honor to listen with open heart as a life is reviewed, end-of-life choices contemplated, a legacy considered, and the work of the dying begun – saying goodbye, asking for and granting forgiveness, and saying, “I love you” in meaningful ways. I consider it a sacred honor to be present for the families – to give guidance about the myriad of considerations that need to be addressed, including the physical process of dying or to help make after-death plans for honoring a beloved body, or to assist a family design a ceremony specific for their dear one.
Years ago, when I returned from my stint as a Peace Corps volunteer and applied to nursing school, I envisioned my life’s career as being a midwife. A self-proclaimed feminist, I had already counseled women with unplanned pregnancies, advocating for their right to carefully choose what was best for them individually. I was sure that even as women’s roles continued to expand during my lifetime, pregnancy, childbearing, and reproductive choices would always be the purview of women. Consequently, my nursing career evolved as a labor and delivery nurse, a practitioner at a free-standing women’s clinic, a public health nurse for high-risk mothers and babies, and as an independent birth doula. It was this last role that gave me the greatest satisfaction – companioning a laboring woman, breathing through each labor contraction, encouraging, affirming her strength as she delivered her baby. I felt the intimacy and sacredness in the transformation of a woman into a mother, of a placenta-dependent fetus into a living, breathing human being.
Choices in Birth and Death
I began to see the similarities of birth and death when my parents came to the end of their lives. Witnessing the progression of their dying process and ultimate leaving of their bodies reminded me of the phases of labor and birth. I came to see death and birth as physical, emotional, and spiritual thresholds because they both involve uncertainty, fear of the unknown, and transformation. Both require courage, surrender, and release. Both are facilitated and made transformative through compassionate witnessing.
Earlier in my life I had come to appreciate a woman’s right to choose if and when to become pregnant and a parent. Now, I want to advocate for a person’s right to have choices about when and how they die. A new vocational “vision” ignited for me and sustains me to this day – that we prepare for, practice, and anticipate our own death as much as we prepare for a healthy pregnancy and birth.
Resolute to learn more about end-of-life realities, I opened to a variety of end-of-life experiences, starting with facilitating small groups to prepare their advance directives. Group members contemplated, sometimes for the first time, who would speak for them about end-of-life choices if they could not speak for themselves, and what emergency medical procedures, if any, they would want to allow if suggested. We had conversations about end-of-life options as well as long discussions about what “quality of life” meant for each person. Perhaps most importantly, the group practiced and encouraged one another to have “the conversation” with friends and family – how to express their end-of-life choices, especially with adult children who don’t want to hear their parents talk about death.
Becoming a Death Doula
My resolve to pursue a death doula practice crystalized in 2015 when I attended the first International Death Doula Conference in Maui, and met death doulas from all over the world. In 2016, VSED (Voluntary Stopping Eating and Drinking) became a beacon of interest when I attended the first International VSED Conference in Seattle in 2016. There, I learned why this end-of-life choice was so important for people, especially those who did not have access to Medical Aid in Dying (MAiD) or could not meet the legal requirements for it. With this new awareness, I sought out VSED caregiving situations in order to acquaint myself with the phases of VSED, as well as the emotional and educational preparation for the individual and family. I became more at ease about death by becoming a volunteer for our local hospice. I sang at the bedside of dying people with the Bellingham Threshold Singers. It was important that I have an accurate understanding of my state’s Death with Dignity Law, and so I became a Volunteer Client Advisor for End-Of-Life Washington, something I continue to do. In this capacity, I meet with people and their family members to discuss the requirements of Washington State’s Death with Dignity Law. If they ultimately decide to use the medication, I facilitate their day of death, mix the medications and, if asked, am present for them or their family members as they die.
Advocating for VSED
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.”
Part Two of this series, “Sharing VSED Resources in my Community”, will post next Sunday.
For information on VSED Resources Northwest, visit https://vsedresources.com/
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.
Thank you for explaining that VSED make not be supported by hospitals with religious affiliations. People need to be aware they should check their hospital’s policies and make alternate plans if needed. This article prompted me to inquire about my health care network’s policies for end of life care.
We need a book on how to successfully do VSED with tips and suggestions on what can be done by the individual and family to make this transition easier. This is the choice I may be left with someday and on my own in doing it. There should be a guide to address early unpleasant effects and how to stick with it.
Nancy, Thanks for sharing your journey with us and for supporting FEN’s training of End-Of-Life doulas in VSED.
Thank you for your work and sharing your thoughts, Nancy. I have watched two people use VSED with good support from family and, in one case, a physicians’ assistant family member. Both people practicing VSED were determined but the process was very difficult. They became increasingly uncomfortable. then confused, and even aggressive in one case. If they had not put their wishes in writing and on video I think that the family may have stopped the process. Neither person was eligible for hospice. I look forward to learning more about how to plan for the process, and how family and friends can support one another and minimize the distress for all involved over the long days and nights. Thanks again!