This June, End of Life Choices California celebrates 10 years since the enactment of the End of Life Option Act which legalized Medical Aid in Dying (MAiD) for eligible Californians. The law enables California residents with a terminal illness and prognosis of less than six months to live (and other requirements) to choose a peaceful death, avoiding needless suffering when they feel their quality of life has fallen below their quantity of life.
To review the decade we turned to EOLCCA Founder and Board member Lynne Calkins, whose depth of knowledge and unique personal story will be useful, informational and celebrated for decades to come. What follows is a modified and loosely translated conversation, over many months, between Lynne and fellow Board member Fran Johns.
Making death with dignity a reality for many
Fran Johns – Before we get to the birthday of the law, can you talk a little of how it came to be?
Lynne Calkins – It came about after years and years of hard work. We had to convince lawmakers to support the bill that Senators Lois Wolk and Bill Monning were crafting. Dr. Robert Brody, now our EOLCCA Board chair, and Dr. Robert Liner, husband of our now hard-working volunteer Judith Bishop, led the effort to get the CA Medical Association to remain neutral – the CMA wasn’t going to support the law, but eventually backed away from opposing it. The rest of us did whatever we could: gave talks, distributed information, put on our yellow Compassion & Choices T-shirts and sat in legislators’ offices and committee hearings in Sacramento. Long, hard work but what great celebrations we had when Gov. Jerry Brown signed it into law.
FJ – And then what?
LC – Then the real work began. Before the law, Compassion & Choices (C&C) was already training individuals throughout the state to work as one-on-one counselors and bedside volunteers for those seeking information regarding end of life decisions. The law opened up a huge opportunity for terminally ill individuals to use medical aid in dying, so that became a key aspect of the volunteer work: Get this information out to those who qualified for MAiD. But within two years after passage of the California law, C&C decided to focus on helping more states pass MAiD laws and ended their on-the-ground volunteer support services.
FJ – I remember being devastated by that decision, having worked for years as a C&C volunteer. Former EOLCCA Board member Stewart Florsheim and I co-chaired the Northern CA C&C Board for several of those tumultuous years, with the help of fellow C&C Board members Brody and Liner and others. C&C is a fantastic national leader in pursuing legislation and advocacy across the country, but I remember the void left when that volunteer program ended in summer of 2018.
LC – For me, void isn’t a strong enough word. We were crushed. As you said, devastated! Here we were with this fabulous law we had worked so hard to achieve and no way to help Californians access it. But we had no choice. We all went back to our earlier end-of-life volunteer lives. But we were definitely knocked out by this news.
About six months later, four of us hatched the idea to create an organization to fill that void, just for Californians. Former EOLCCA Board member and later E.D., Judy Epstein, Claudia Comins, Karen Morin and I were all trained, experienced C&C volunteers. We were all passionate about the individual’s right to choose a peaceful death, and we missed the work. In February 2019, we launched the nonprofit End of Life Choices California (EOLCCA), with a mission to provide Californians the information and support needed to navigate their end-of-life options.
FJ – And suddenly, EOLCCA was off and running?
LC – Well, not exactly suddenly. We had all the details of getting a nonprofit officially launched: Putting together a board of directors, establishing by-laws, building and launching a website, training volunteers, establishing a highly encrypted database, designing and printing brochures, buying a mobile phone to pass back and forth between us so we could take turns answering calls. But we had no experience in such a venture. Fortunately, we did have some very experienced, knowledgeable individuals (some of whom you named earlier) who lent us their expertise, and Voila! Within six months we had done all that and achieved the IRS Tax-exempt status we needed to call ourselves a nonprofit 501 C 3 organization. Whewww! It was an amazing time. We were fortunate to have had such sound advisors ensuring we begin with a solid foundation.
FJ – I surely remember being invited to join the board of this new organization. En route home from my first meeting I asked Bob Brody, who’d given me a ride, about some summer plans. He said, “No, the virus is spreading. That genie is out of the bottle.”
It was February, 2020. I said, “What virus?”
LC – Fortunately, we at EOLCCA, already proficient in the use of Zoom, were able to continue our work undeterred during the pandemic. Because EOLCCA’s structure included Board members and client volunteers up and down the state, we had incorporated virtual meetings from the very beginning. No ramp-up for converting to virtual necessary.
FJ – I had an EOLCCA client, a young lawyer whose mom was using MAiD in an assisted living facility in Marin. He was absolutely panicked about not being able to help her without me there, which of course was impossible due to the pandemic. I was there for him on Zoom. After the first step he barely looked at the screen; everything went fine and he was forever proud of himself.
LC – And along with FaceTime, these virtual conversations became an effective tool we could use with our clients to avoid contact at the time. We still use it effectively today in any situation where we may not have a volunteer available to be present in person.
LC – I remember another, earlier story, before the pandemic and when we were still using seconal as a life-ending medication. I had a client I’ll call Ed. In his late 70s, divorced, living alone and with metastasized prostate cancer, and planning to use MAiD. He took my advice to include his former wife – they had a good relationship – and three adult children in his plans.
We talked often. I was able to help him get through the interminable 15-day wait period CA then had and talk him out of asphyxiating himself in his car. His ex-wife, children and their spouses all came out and spent a joyful week together before he died and were there when he took his MAiD medication.
We EOLCCA volunteers travel in pairs, so my teammate and I arrived in time for his pre-medication; he cleared out his many friends, said lots of goodbyes. Finally, he was ready and went upstairs to his bedroom. Ed drank his seconal-laced mango juice in his favorite goblet quickly, fell asleep and died peacefully with all his kids lying on the bed next to him, arms around him.
LC – As California & the country emerged from the pandemic, EOLCCA was growing rapidly; more and more calls each month. For years, we were an all-volunteer run organization. We had set up a 24/7 “Warmline” with our phone number, so anyone with questions or wanting help could leave a message and a callback number. The four founders initially staffed the warmline. But as callers increased in number, we needed to expand and train new volunteers to cover the phone and help with all the other work.
FJ – I think you developed that training program. Explain.
LC – Our training curriculum was modeled closely after the excellent C&C volunteer training program managed by Judy Epstein, and included our own expertise and experiences. After careful screening of new volunteers, and following two in-person trainings before the pandemic, we began successfully conducting those same comprehensive volunteer training sessions by Zoom, and we continue today.
In the ensuing years EOLCCA has grown to where our volunteers now typically respond to over 100 inquiries a month and provide in-home support on the “day of death” to over 75 people utilizing MAiD each year. Our organization has grown from being entirely volunteer-run to now having two fulltime paid staff, Executive Director Mark Greenberg and Volunteer and Program Manager Lea Policoff, and a half-time Speakers Program organizer, Amber Valenzuela.
FJ – Fast forward to January 2024 and a moment we all now remember.
LC – Yes. I had been having some problems with my speech: raspy voice, some slurring, difficulty with some consonants and exploring this with my doctor and a speech therapist, who said it might be a thing with “aging.” I was doing the prescribed exercises but they weren’t helping. I’d had a negative MRI; no stroke, no mass.
On that day I happened to be on phone duty for the warmline. After finishing a call with a man who had Bulbar ALS – there were actually, amazingly, two such callers within a short period – I hung up the phone and thought, “He sounds like me! Like I’m beginning to sound.”
After rushing back to her doctor and requesting a neurologist and patiently (sometimes not so patiently) going through yet another test, Calkins was diagnosed with the rare form of ALS, Bulbar type, in March of 2024. She credits serving as an EOLCCA phone volunteer with getting an early diagnosis. Sadly, there is no treatment and no known cure for ALS.
As she slowly began to share her diagnosis with family, friends and colleagues, Lynne Calkins added one firm statement: “When the time comes, I plan to use the California End of Life Option Act. I will choose Medical Aid in Dying for a peaceful end to a good, long life.”
EOLCCA, founded on the conviction that all Californians should have full and accurate information about their legal end-of-life options, has quickly become the go-to organization for understanding and acting on these options. Our Warmline and trained volunteers help in all phases and with everyone involved – dying patients as well as their caregivers and loved ones.
One Response
We love you Lynne and appreciate all you have done to educate us about the process. We give you an loud round of applause for the strength you have shown in sharing your personal journey with ALS.
We all need to keep spreading the word about EOLCCA and understand that death is part of life.