Over the past year, we have received increasing requests from individuals and their families for support related to neurological disorders like dementia. They are searching for options to escape the emotional and physical suffering that comes with losing their memory, their quality of life, and their autonomy. Unfortunately, most of these people do not qualify for our Death with Dignity (DWD) law as they don’t have less than six months to live or they aren’t mentally competent. They are, however, able to access Voluntary Stopping Eating and Drinking (VSED) as an end-of-life option – a choice we realize needs more support, education, and advocacy from our organization to meet the needs of Washingtonians facing these neurological disorders.
Jane, according to her family, was someone who usually knew what she wanted. One of her favorite sayings was, “You don’t get what you don’t ask for,” and Jane embodied that philosophy for most of her seven-plus decades. That’s why her family wasn’t surprised that when it came to dying Jane knew what she wanted and was comfortable asking for it: a peaceful death at home with her family around her.
She was also clear about what she didn’t want: to end her life alone in a memory care facility. She had watched her mother and older brother spend years slowly dying in Alzheimer’s units, and she had no intention of following suit. If this meant she had to die before her body was ready to call it quits, so be it. Jane had lived an adventurous life, full to overflowing with feminist work and activism, time spent in her beloved mountains, a 55-year marriage, and two daughters she helped raise to be strong, independent women in their own right.
In 2009, Jane was diagnosed with mild cognitive impairment (MCI), often a precursor to full-blown Alzheimer’s. For years, she and her husband Dick researched and discussed options that would keep her out of a memory care facility if and when her condition progressed. Then, in the fall of 2016, they attended a workshop on dying with dignity. There, they learned that Washington’s Death with Dignity Act is not available to people with Alzheimer’s. Those in early stages of dementia are ineligible to request life-ending medication because they do not have an immediately terminal diagnosis, and those in later stages have cognitive impairment that renders them ineligible for the program. However, Jane and Dick learned, a person in the early stages of dementia can pursue voluntarily stopping eating and drinking (VSED) to hasten their own death. In the United States, as long as an individual has the capacity to make medical decisions for themselves, they have a legal right to refuse nutrition and hydration.
After the workshop, Jane and her family met with a death doula to discuss VSED. The doula described the process and explained that if done correctly, with a doctor’s support, on-call nursing care, and palliative medication, VSED can be a peaceful, empowering end-of-life choice. “That’s what I want to do,” Jane declared, characteristically adamant. “So, how do we do it?”
The doula pointed the family to the End of Life Washington website for additional information and important legal paperwork. Jane found an attorney who advocates for VSED and Death with Dignity, and a geriatric specialist who would support her decision to hasten her own death, and within six months, she had a VSED plan. The remaining question was timing. After many conversations with her support team, she decided she would be ready to begin VSED when (1) she no longer knew her friends and family; (2) her relationships with loved ones began to suffer irrevocably; or (3) she could no longer live safely at home. Until then, she would enjoy her life, traveling with Dick to the places they had always loved (Alaska, Wyoming, and the San Juans); spending time cheering on their granddaughters at soccer games and school concerts; and celebrating milestones and holidays with their loved ones.
In late 2019, it became clear that Jane’s dementia had reached the markers she had set for herself. After one last Christmas with her grandchildren, one final New Year’s celebration with her husband and family, she was ready. On the first day of February 2020, with her family and friends supporting her, Jane began her terminal fast. Over the next ten days, she experienced the peaceful, empowering death the doula had described as her body slowly shut down. Throughout the process, she was well cared for and showed no outward physical suffering. This was a relief to her family as it was a much less difficult experience than they had anticipated. Her family characterized Jane’s VSED process as “beautiful.” Jane did experience the mixed emotions many dying people suffer when they realize they are leaving their
families, but she never second-guessed her decision. In the face of her impending death, she was resolute.
On the tenth of February, with the super moon still waning, Jane took her final breath, her loved ones all around her. Jane was fortunate—she had the support of those who believed in her autonomy and supported her right to choose how to end the final chapter of her life. As the Hospice Chaplain said a few short hours before Jane died, “Jane has been a pioneer throughout her life. It makes sense she would be a pioneer in death, too.”
End of Life Washington is grateful that Jane’s daughter, Jen, shared her mom’s story with us. It powerfully illustrates why we are expanding our services to more broadly support VSED. The number of Washingtonians contracting Alzheimer’s dementia is a powerful reason to increase our support for non-DWD clients. The Alzheimer’s Association national research shows us that over the course of our life, one in ten of us will be diagnosed with Alzheimer’s disease. If we are Latino and/or Black, the disease will impact up to one in five of us. While recognizing that Death with Dignity remains at the heart of End of Life Washington, the pioneering End of Life Washington Board of Directors has approved a VSED initiative that will coordinate services, advocate for law changes, and increase awareness. With your support, by July 2021, many more Washingtonians with neurological disorders can die with the support and courage that Jane experienced.
Learn more about Voluntary Stopping Eating and Drinking (VSED).