The Soul of the Exit Guide Program

(Beverly Thorn is a psychologist, former dementia caregiver, and certified end-of-life doula. She is the author of hundreds of articles, two books, and four workbooks on coping with chronic illness. Currently professor emerita from The University of Alabama, she continues to publish, speak, and conduct workshops nationally and internationally on managing chronic illness. She is a lifetime member of Final Exit Network and serves on the Medical Review Committee. Her recent book, Before I Lose My Own Mind: Navigating Life as a Dementia Caregiver, is available wherever books are sold.)

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I just returned from a Final Exit Network meeting of volunteers serving in the Exit Guide Program. Some volunteers have more than one role or take on different roles over the years. I am a newbie on the medical review committee with only a few months experience under my belt. As a clinical health psychologist and neuroscientist, I thought I might be useful.

I became a volunteer because I wanted to give back. My husband, Walt, died of Alzheimer’s-related complications in 2020 and had explored his options for choosing to die before he lost his capacity to make his medical decisions.

There aren’t many possibilities that don’t involve violence, suffering, and intense emotional damage to surviving loved ones. Medical aid in dying (MAiD) was not an option. We did not live in one of the eleven states with MAiD (plus Washington DC), but even if we did, people with dementia don’t qualify. By the time they are judged to be within six months of dying (eligibility criterion), people with dementia have long lost their capacity to make their own medical decisions, and healthcare POAs (healthcare representatives) cannot decide for them.

Walt investigated going to Switzerland, but the application process was opaque and complex with long delays in communication from the organization. Further, it felt like a rather cold option, and anyway, Walt didn’t want to leave his four daughters behind.

For us, Final Exit Network seemed just right for a non-violent, painless, preemptive avoidance of years or decades without autonomy, reasoning capacity, or ability to care for himself. What impressed me about the application process is that it was accompanied by personal empathy in the form of a volunteer who returned our call, answered our questions, explained necessary steps, and processed our application.

Our next interaction was with a telephone interviewer, who also engaged with us on a human-to-human level. As applicants, we did not interact with the medical review committee, but when Walt was accepted for guide assignment, Exit Guides were appointed to work with us. Two of them arrived from different parts of the country and spent several hours with us in what I now know was an education visit. They reviewed the equipment Walt had purchased, watched him assemble it, and suggested a “dry run” in which he would test the equipment, see what it felt like, and assure himself there was no sensation of suffocation.

Walt drew the line at this, too anxious to experience how it felt. I learned later that many people are reassured by this step and feel like it is “all coming together.” Walt, however, was fearful and, in retrospect, increasingly more ambivalent as his dementia progressed.

My husband, once adamant to engineer his death with dignity, changed his mind, as was his right.

Several things amazed me about our progression through the FEN Exit Guide Program process. First, it is free. Although we were already FEN members, you don’t have to be. Anyone can get information and educational support, which includes Exit Guides who visit the home of an approved client. The process is still evaluative, with more phone calls, and considering the propriety of the home environment, privacy, as well as family/friend knowledge and support.

But what amazed me was the care and sensitivity of each volunteer at every step of the way. At a time when a person with serious, debilitating illness and their loved ones are often ostracized, lonely, and feeling helpless, this kind of outreach felt – ironically – like a lifeline of emotional and informational support and understanding. In general, our society avoids talking about dying, and we certainly don’t want to talk about hastening death!

Here was an organization that encourages talking about the hard stuff and provides accurate information on gentle self-deliverance.

After my husband died, and after a period of grief and recovery, I knew I now had the emotional bandwidth to volunteer.

When I was invited to join the medical review committee, I accepted. Although I’ve now reviewed a few cases with the mentorship of others, the recent meeting was my first face-to-face experience with fellow volunteers. Given lots of time to talk and interact, I had ample opportunity to get to know why these people give so much.

• Many volunteer because they’ve witnessed horrible deaths of one or more loved ones. (For example, the daughter whose very ill father hanged himself in the shed in the middle of night after covering the windows with brown paper and leaving a note on the door to call 911 and not enter themselves.)
• All these volunteers are clearly morally and ethically committed to one’s right to choose the time and manner of their death. Poignant, de-identified stories of the individuals served were shared, making their clients’ lives palpable and precious via intimate details – such as what the client said they did on the day before they chose to end their life, or what their last act was before exiting. (One woman got up and wiped down her kitchen counters. It made her feel “ready,” she said.)
• We also heard from volunteers haunted by situations that did not go well. Most often, a client waited too long, missing their window of opportunity to be physically or mentally able to independently decide or operate the equipment. We shared tears as we went around the room talking about how important it was for us to meet and care for each other, in the midst of supporting our clients.

By the last afternoon, as we met with the FEN Board of Directors and gave them a sampling of our “boots on the ground” experiences, I felt profound gratitude for being part of a uniquely important and deeply committed community. It is one that gives space for discussion of mortality and end-of-life options; encourages empowerment in choosing when to die; provides information on non-violent, pain-free options for death; and, when appropriate, being a supportive, bedside presence for someone choosing to exit.

I think I’ve found my tribe. I hope I can measure up to the dedication I observed in these volunteers.

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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.

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