(Patrick Hoctel is editor of The Bay Area Reporter, America’s longest continuously-published and highest circulation LGBTQ newspaper. This review of FEN’s book is used with permission, first appeared online here.)
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While a slim volume, There at the End: Voices from Final Exit Network: A Celebration of 20 Years, is chock-full of powerful testimonies from the full spectrum of Final Exit Network (FEN) clients and volunteers: advocates (both personal and professional), regional and phone coordinators, doctors and nurses, exit guides, death (end-of-life) doulas, friends, spouses, adult children and, of course, those who have decided to end their lives on their own terms.
FEN had its beginnings in the Hemlock Society, which was founded in 1980. It evolved from there through various phases and organizations (Caring Friends, End of Life Choices) to its own formation in 2004. Its foundation is the “clear and unwavering belief that mentally competent adults who suffer from a terminal illness, intractable physical pain, chronic or progressive physical disabilities, or who face loss of autonomy and selfhood through dementia have a basic human right to choose to end their lives when they judge their quality of life to be unacceptable.”
Graceful exits
A prevailing theme of these many personal accounts is gratitude, both from clients and FEN volunteers. An anonymous client is thankful that “no tubes connect me to pumps, or drips, or monitors. I’m in no pain. No real discomfort. No distress. I am continuing a loving time with my husband … My death is forty-two days away.”
She is more than happy with her own particular situation and how she has chosen to live life and death according to her own plan, stating, “I have the ultimate luxury of being vividly aware of who I am and how I have lived my life. … Now there is time, an aware time, to be certain our love, affection, appreciation, respect is spoken, is shown.”
Senior guide Fran Schindler is a big booster not only of FEN and the services it provides but also of what it has done for her. She enthusiastically declares that the “privilege of someone being willing to have me sit with them when they die, when I only just sit with them, is the most meaningful thing I have ever done.”
A common thread for volunteers is the sense of having found themselves, their true calling, through FEN. Longtime coordinator Ann Mandelstamm remembers that pre-FEN, “I felt pretty comfortable, but I never quite fit in anyplace I was in life.” According to her, the best thing about her experience is that “I found my tribe! People laugh at me because I say this, but it’s true. Here’s my tribe. I found it. I love it.”
She adds about her work with over 100 clients, “It’s so valuable to sit and talk with them, to educate and answer their questions about VSED (Voluntarily Stopping Eating and Drinking) or anything else. … This has been a godsend for me. I feel so lucky because FEN just gave me so much in my life.”
Although “There at the End” emphasizes the positive aspects of FEN, it doesn’t shy away from depicting the opposition and dangers you can face in trying to carry out your own death or assist in one. Frequently, pushback can come from family members, especially spouses and adult children. Interestingly, more often than not, these same people come to accept, if not approve of their loved one’s decision once they learn more about FEN and its practices.
End of life wishes
The medical establishment is often a hindrance to people who simply want their own wishes followed as regards their chosen end. Doctors and nurses may ignore, sometimes arbitrarily so, legal end-of-life documents to follow their own beliefs about how a patient’s needs should be met or simply follow hospital protocol even when it’s not totally clear.
One husband is haunted by what he sees as his failure to deliver on his promise to not allow his wife to suffer. As she slips away from dementia, her own home care hospice unit refuses to follow her advance directive, because from their “medical perspective, she was not at the end.”
Eventually, the husband places his wife in a particular dementia facility, as several doctors advise him that “this facility will kill her within days as it is ridden with contagious and fatal diseases.”
In an extreme case, profiled on “60 Minutes,” an adult daughter, Barbara M., found herself under arrest and in custody when she made the mistake of telling her 93-year-old father’s nurse that she had handed him a “small vial of prescribed morphine” at his request. The nurse “called her superiors, who summoned police and EMS.”
Years later, after her nightmare is over, Barbara still has trouble talking about it: “It does a number on you.”
However, she does say, “I had an opportunity to bring injustices into the public consciousness, and I’m very glad I did that. But, boy, I wish this had never happened, especially for my father. He was tortured at the end.”
The good news is that these various trials and injustices can foster acts of activism that fuel the end-of-life movement in positive ways. For instance, Ed Tiryakian’s outrage over how Barbara was treated by the system leads him to create a nonprofit advocacy group, Dying Right NC, to “pursue Medical Aid in Dying legislation in his native state” of North Carolina. So far, bills have been filed in “three legislative sessions,” with the last one in 2019 featuring bipartisan sponsorship for the first time.
The peace of mind Neta receives once she is accepted as a FEN client allows her to then proceed on her own private crusade to “publicly try to improve social issues,” including writing four books. In one, she solicits others for contributions “about dying and how one should have the right to control that important part of life.”
Repeatedly, initial skeptics of FEN and its activities, whether prospective clients, family members or those in the medical and legal communities, become converts. While FEN enjoys its 20th anniversary, it can be proud that it has helped advance a culture and method that make death with dignity more than just a possibility. Many people hope that, as the century progresses, a person’s ability to decide the when, where, and in what circumstances their life concludes is the next great inviolable civil right.
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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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Life is a terminal condition from the moment of conception. It does not require a diagnosis (interference by corporate entities) for individual determination of when the qualities defining it have been eroded beyond endurance.That is a uniquely personal decision, to be respected and facilitated by a humane society in favor of the autonomy of the individual in question.
Thank you for the eloquence of your comment.