VSED: The Least Bad Option

(Kate Christie is a former technical and marketing writer who now primarily writes fiction. She is author of the book, The VSED Handbook: A Practical Guide to Voluntarily Stopping Eating and Drinking.  She also works with VSED Resources Northwest to promote awareness of and access to voluntarily stopping eating and drinking (VSED).)

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“I don’t want to die a stranger among strangers,” my mother told me shortly before she voluntarily stopped eating and drinking in early 2020.

She had been diagnosed with mild cognitive impairment more than a decade earlier, a condition that, in her case, was a precursor to full-blown Alzheimer’s disease. Her own mother had languished with Alzheimer’s in a memory care facility for nearly seven years, and my mother had sworn to plot a different end-of-life course. By late 2019, terminal dementia had drained her life of joy and connection, and due to increasingly violent emotional mood swings, she could no longer live safely at home.

Because Mom was resolute in her determination not to be placed in a memory care facility, my parents decided that it was time for the early exit she had been planning since 2016, when she first learned about voluntarily stopping eating and drinking (VSED). She probably would have chosen medical aid-in-dying (MAiD) if she had qualified, but approval for MAiD — which is only available in ten states plus Washington, D.C. — typically hinges on a six-month terminal diagnosis. For people in the rest of the country, and for all who suffer from terminal conditions like Alzheimer’s, ALS, Parkinson’s, and other slow-moving degenerative diseases, VSED is often the only legal option to hasten death.

My mother concluded that VSED offered the kind of death she was looking for — ending her life peacefully at home at a time of her choosing, with her loved ones present, and hospice care available to help. She also liked that VSED offered the opportunity in the first few days to change her mind if she decided she wasn’t ready, the chance to say a long goodbye to friends and family, and time to process her own feelings about leaving her loved ones.

Once she stopped eating and drinking in February 2020, her organs slowly began to shut down, and death came only ten days later.

“This is a very good death,” our hospice social worker told me shortly before Mom died.

“You must see that a lot,” I said.

The social worker shook her head. “Not really.”

Fear of suffering

I supported my mother’s decision from the outset, but I had qualms. Would she suffer? Would I suffer watching her dehydrate herself to death? Would my elementary-aged children be able to understand why their grandmother had chosen to hasten her death? Concepts like VSED and the right to die were far too complex for them, so we decided to share only a partial truth — Grandma could no longer live with her terminal brain disease, and so she was going on hospice care and would likely die within a few weeks. We had prepared them all along, and while her impending death was terribly sad for them, it wasn’t a shock.

That’s another advantage of VSED — it gives loved ones the chance to prepare and the opportunity to say their own long goodbyes. My children wrote letters to their grandmother about all the fun activities and loving memories they’d shared with her, and they chose their favorite photos of themselves with her to accompany their words. Those letters are now ours, and they serve as visual reminders of the importance of their connection with their grandmother.

As far as suffering goes, my mother didn’t seem to have any that wasn’t associated with a typical dying process — grief at leaving her loved ones, some physical discomfort that hired caregivers managed with good oral care and palliative care meds, and cognitive breakdown and confusion as she neared the end. To me, it seemed as if she accelerated the process of dementia into a shorter period of time, packing symptoms her own mother had experienced over 5-7 years into a mere 10 days.

Many people I’ve spoken with before and since my mom chose this end-of-life option have shared their opinion of VSED as brutal, torturous, and cruel. And it can be that, I imagine, if deliberate planning breaks down, physical symptoms exacerbate the process, or the person resists sedation. But death is not an easy process no matter how it is achieved, especially when the body remains healthy while the brain fails. For people who have significant underlying physical disease, VSED can take as little as a few days. Without underlying disease, the process takes longer, usually from 10 to 14 days, as long as no water is swallowed.

Impact on the Family

As a family caregiver, the pain I felt during my mother’s VSED journey was also somewhat attached to the dying process — grief at losing my mom, regret over not having more time with her, guilt over whether or not I had been a good daughter. But there was also an additional layer of suffering — I knew that I had the power to keep her alive simply by bringing her a glass of water or a bowl of ice cream. Her dementia was far enough along that over the first few days of VSED, she would sometimes forget what was happening. We would remind her of the process and allow her to decide if it should continue, always with the caveat that if she stopped VSED, she would have to move into a memory care facility. She never wavered in her determination, but I couldn’t help feeling that if I had simply brought her a ginger ale when she asked rather than letting her make an informed choice, I could have stopped her from dying.

Then. I could have stopped her from dying then. But she was still dying from Alzheimer’s, and I couldn’t be the one who took away her choice of how the final chapter of her life would unfold. As our local hospice nursing manager said, “Your mother didn’t choose a terminal illness. She only chose not to let the disease pick when and how she would die.”

Mom chose an ending to the story of her life that was right for her, and while it was by no means easy, I’m glad I supported her. I’ve come to think of VSED as my mother’s least bad option when facing the brutal disease of Alzheimer’s. VSED on its own sounds terrible, but in the context of my mother’s dementia diagnosis, VSED was the gift she gave herself — and those of us who loved her.

The VSED Handbook

Before she died, my mother asked me to share her story so that other people like her — those with a phobia of institutionalization, fiercely independent individuals, or those who would rather die than lose their memories of their life and loved ones — would know that they have the option to hasten their death too. Far too many people believe that their only option when faced with a degenerative disease is a long, painful slide into oblivion. But it’s not. As my mother’s attorney says, you have to be willing to give up good days to avoid bad years. For my mom, that trade-off was worth it.

Two years after her death, I wrote a book called The VSED Handbook: A Practical Guide to Voluntarily Stopping Eating and Drinking (VSED). Only seventy-five or so pages long, this short guidebook offers an actionable model for how to go about planning and carrying out VSED, with the aim of achieving the type of peaceful passing my mother did.

The book, written with my mother’s blessing and support, covers the VSED planning process in detail, provides a step-by-step guide to preparing for VSED, an overview of what the process itself entails, and information about the legality of hastening one’s death. I tried to supplement the process-oriented sections of the book with relevant examples from my family’s experience, highlighting tips that we would have found useful while helping Mom prepare for and carry out VSED. In addition, the book’s appendixes offer a collection of tips, a VSED timeline, a sample legal statement, a medical values worksheet, and a list of additional resources.

If you have any questions about the book or about VSED, please reach out to the non-profit group VSED Resources Northwest, co-founded by Nancy Simmers, the death doula who shepherded my mother — and our family — to a death that was significantly more peaceful than the tortuous long, slow dying process Alzheimer’s promised.

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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.