If Only We Had Known

We’d like to share a story with you about a friend of EOLCCA who attended our Bereavement Group after her husband died using medical aid in dying (MAiD). She joined us recently to tell her story at a Palliative Care Physicians conference where we were on a panel, and it was so moving we decided to share it with you. Please meet Trudy, a lovely person from southern California. (Her last name is withheld to protect confidentiality.)

Trudy has a Western Swallowtail butterfly tattooed near her heart, a constant reassurance of the presence of her beloved husband, Gary. As he lay dying on their flower-filled patio, Trudy remembers “the wind chimes chimed, and I saw a Western Swallowtail butterfly – the way he always comes to me now . . .”

photo of a Western Swallowtail Butterfly

Gary’s final years had not been so filled with grace. First diagnosed with stage 4 lymphoma in 2019, he underwent months of chemotherapy and, later, a bone marrow transplant in another city. By late 2022, Gary was back home, but weakened. He and Trudy were briefly optimistic when a scan showed no cancer, but it turned out to be only a short reprieve.

Palliative Care vs Hospice

In January of 2023, Gary accepted palliative care – “which we had soundly rejected earlier,” Trudy explains, “because it felt like we were giving up on curing Gary of cancer.” Hospice care was not an option at this point because Gary could not go on without regular transfusions and trips to the hospital to drain fluids. Pain medications were inadequate, and Gary’s palliative care team seemed unable, or unwilling, to make necessary changes. It was at this point that hospice was called in.

Medical aid in dying

Late in this journey, the pair learned of the California End of Life Option Act, which empowers dying individuals to take control of their final days and weeks. It’s what they learned along their journey that Trudy hopes might help others avoid some of the pitfalls that consumed precious time and energy.

Unnecessary roadblocks

“I was a resource teacher,” Trudy says; “and know how to use technology.” But even with those skills, when Gary was diagnosed with a probable life-ending cancer, they were denied complete and detailed information about their options. “There ought to be a policy,” she says now, “that people dealing with terminal patients at least have a simple requirement  to hand them a brochure.” In fact, physicians uncomfortable discussing terminal diagnoses (as theirs was) or unsupportive/uneducated about the California End of Life Option Act, is sadly often an early roadblock to empowering patients with the information they need.

“If only we had known . . .”

Understanding what services are available, often mandated, is critical to those dealing with terminal diagnoses, Trudy emphasizes. In their case, determined to pursue every available possibility for a cure or remission, she cites best and worst case scenarios and many in-betweens. Their social worker was excellent (“Everyone should have a knowledgeable social worker!”) and provided both help and comfort. But a thorough understanding of two critical pieces of end-of-life care, early on, would have made a difference. For example, “we strongly rejected palliative care,” Trudy says, “because it felt like we’d be giving up. It was very unclear to us. Everyone should know the difference between palliative care and hospice and the important benefits of both.”

Trudy also urges better information and understanding about pain management. Gary’s pain medications proved inadequate as he neared the end of his life and the two of them argued for changes to alleviate his suffering.

Palliative care is focused on symptom relief, including pain relief, with a goal of improving the quality of life for both patient and family, while receiving treatment. It does not require a diagnosis of terminal illness or that all treatment be forgone.

Hospice care is for the terminally ill with an anticipated life expectancy of six months or less, when cure is no longer an option. The focus shifts from treatment to symptom management and quality of life for both the patient and their family/loved ones.

Trudy and Gary’s journey was the two of them throughout. A couple of introverts “who would never have gotten together if online dating hadn’t existed,” they met online in 2006 and married in December of 2014. Throughout their marriage, they enjoyed hiking and being in nature, even naming their company for a California sunflower. After Gary chose to use MAiD, when the time came she and friends filled the patio to overflowing with flowers and surrounded him with “a bubble of beauty and love.”

As part of his legacy, Trudy is helping spread awareness about end-of-life care and medical aid in dying, which provided Gary with the the calm and peaceful death he wished for.

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A lifelong newspaper and magazine writer, EOLCCA Board Member Fran Moreland Johns has published fiction, nonfiction, and several books. Her focus on end-of-life issues includes many volunteer years, numerous articles and one book, Dying Unafraid. She holds a BA in Art from Randolph-Macon Woman’s College, and currently blogs at Medium.com and franjohns.net. Her short story collection, Marshallville Stories, was released in April 2022.

EOLCCA supports a strong team of experienced volunteers throughout the state, ready to help families – like Trudy and Gary – with information and support to navigate their end-of-life planning and choices. That includes obtaining aid in dying through the California End of Life Option Act, helping them obtain needed services or adequate pain control, and finding physicians and hospices willing to prescribe. We wish we had met Trudy and Gary sooner to provide that help when they really needed it.  EOLCCA is a 501(c)(3) nonprofit organization and we rely on donations from individuals and foundations to support our work. To make a contribution or request an educational presentation, please visit ways to help.  Thank you!

Eggs in Purgatory Book Review

Spoiler Alert: We know that parts of this book review are hard to read, but we believe it is worth sharing. The reality is that self-medications can go wrong, not all hospices are the same, and every experience is unique. EOLCCA was founded in large part to address and try to alleviate all of these issues and more, by providing information and support to people who contact us.

What if your elderly parent wanted to end his suffering – but didn’t have a terminal diagnosis?

What if you were honoring a loved one’s wishes – but began feeling, guiltily, that maybe you “just wanted him to die”?

Award-winning author Genanne Walsh examines some of the most complex questions that confront terminally-ill individuals and family members wanting to help and support them.  Facing life’s end is no easy task. Walsh’s father Gene faced his own end fearlessly and early, but when it arrived there were roadblocks for him, as well as for his loyal and supportive daughter, that they could never have anticipated.

 

Favorite breakfast dish

In her excellent new book, Eggs in Purgatory (the title references a favorite breakfast dish), Walsh leads readers through and around those obstacles with her. The tale takes barely 80 pages of text – it’s more long-form essay than hefty book – but brings valuable lessons and insight.

“All my life,” Walsh writes, “I could count on two things from my father: love and upheaval. I felt acutely when he was dying that it was my destiny to walk that road with him . . .”

Raised Catholic, Gene Walsh served as a priest for ten years. After meeting his future wife at a Catholic university in upstate New York, he left the priesthood and the church. But he remained deeply spiritual. Part of that spirituality was a view of death and afterlife his daughter describes as a belief that “his spirit would continue: stardust, essence, universal oneness.”  It supported his emphatic wish for a quick exit from this life, with no intervention to extend it when the time came. To that end, Gene Walsh did all the right things: wrote down his instructions, talked with his physician and his daughter – nobody was in doubt about his end-of-life wishes. (See the Planning tab on this website for help with your own!) But this is not always enough.

 

She dialed 911

Eggs in Purgatory opens with the story of Gene Walsh’s suicide attempt. Finding her father snoring but unresponsive, an empty bottle of over-the-counter “sleep aid” pills on the bedside table and vomit on his shirt, his daughter could not leave him to whatever might come next. She dialed 911. The call led to a weeklong hospital stay that began with a psychiatric hold and ended with diminished mobility added to his already failing hearing and eyesight and a list of other non-life-threatening afflictions. Discharged with instructions about getting better, he had little enthusiasm for living.

A wish to quickly die

After his wife’s death, Gene had moved to California, into a downstairs apartment below the home of his only child, daughter Genanne, and her wife Lauren. It was there, at Christmas, not long after the suicide attempt, that he explained his decision to stop eating and drinking – invoking the California End of Life Option Act and believing that he would then quickly die. A sympathetic physician honored that decision and referred him to hospice care.

Author Walsh writes of what followed in a wrenching tale of good end-of-life plans gone awry. Gene left his physician’s office almost euphoric. The family joyfully received the hospice nurse, a gentle, empathetic young man who outlined the care that would follow. But joy came to an abrupt end when the nurse called his office to get a sign off from the attending physician. That doctor, after reviewing the case, decided that Walsh lacked a terminal diagnosis as required by the California law and was therefore displaying “suicidal behavior.” This required a report to local authorities, a visit from the police, and a narrowly escaped return to the psychiatric ward.

Eggs in Purgatory Book Cover
Happy ending

There is a happy ending to author Walsh’s small book. It’s no spoiler to say that her father eventually gets the death he welcomed. What she leaves us with are cautionary lessons, and a wealth of insight into questions that can arise when we or a loved one is facing death.

When calls for help and information come to EOLCCA, our trained volunteers work with clients like Gene Walsh and his family to connect with a sympathetic hospice and get the support needed. We are grateful to author Walsh for sharing her story in order to help others avoid the pitfalls her family encountered.   

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A lifelong newspaper and magazine writer, EOLCCA Board Member Fran Moreland Johns has published fiction, nonfiction, and several books. Her focus on end-of-life issues includes many volunteer years, numerous articles and one book, Dying Unafraid. She holds a BA in Art from Randolph-Macon Woman’s College, and currently blogs at Medium.com and franjohns.net. Her short story collection, Marshallville Stories, was released in April 2022.

EOLCCA supports a strong team of experienced volunteers throughout the state, ready to help anyone, anywhere in California free of charge with information and support regarding all end-of-life planning and choices, including aid in dying through the California End of Life Option Act. You can find comprehensive information on our user-friendly website. To support our work, or request an educational presentation, please visit ways to help.  Thank you for your support!

Not in the Job Description, Bonus Benefits of EOLCCA Work

“All they really needed,” one volunteer said of a client’s family, “was an outsider’s ear and a little time.” The volunteer had come, after making an appointment on the phone, to talk over end-of- life choices. The client was close to death from cancer and wanted to know about using Medical Aid in Dying (MAiD). One of her adult children, though, was encouraging her mother to begin another round of a new chemotherapy drug.

“And there I was,” the volunteer said. “Not a doctor, not a therapist, just a volunteer with no  skin in this game. So I told them I could only answer questions about end-of-life choices but I’d be happy to listen. Then I sat down in a corner across the room.” For about an hour the mother and daughter talked; the mother saying she was tired of the pain and struggle, the daughter saying she “wasn’t ready” to lose her.

“Occasionally they would look at me,” the volunteer said; “asking about pain, or legal options, or time spans. At long last, the daughter gave her mom a hug and said, ‘I’ll support you, if this is what you want.’ It was a beautiful moment.”

daughter with mother turned to look at her smaller size
A cloud lifted

Another client told his volunteer, early on, that he was worried about his 65-year-old son. The son had been with his mother when she died, and a younger brother when he died. The son was emotionally fragile and his father thought that experiencing one more family death would be devastatingly difficult. 

Over the next several weeks, the volunteer visited with the son repeatedly at his father’s bedside and over coffee at a nearby bistro. After lengthy discussions about MAiD and how it works, the son became comfortable with the idea of saying goodbye to his father well before the latter took life-ending medications. “It was like a cloud lifted for both of them,” the volunteer said; “when it was silently agreed that I would be with the client if requested and the son would not attend his dad’s death. At the end of each visit both father and son would say goodbye with a lot of love and a little finality.”

Being a good listener

The neighbor of another volunteer, hearing she worked with end-of-life issues, asked her to help her daughter talk about them. Within a week, both mother and daughter had their long-postponed advance directives done.

Such experiences are common: times of tenderness for clients and volunteers alike. Clients and families get the care and relief they sought, while volunteers always learn a little more themselves – how to be a listener as well as a doer.

volunteer with patient
Ways we are able to help

One multifaceted happy outcome was experienced by founding board member and almost daily volunteer Lynne Calkins. Calkins took a call from David Timoner and directed him toward a hospice and eventual peaceful MAiD death for his dad Eli. “I remember talking with David about his concern that younger sister Rachel, a rabbi, might be against MAiD. In the end, of course, she was not. She totally came around in support of the family, and the End of Life Option Act. She continues to support MAiD and seeks to educate the Reform Jewish community.”

Eli Timoner’s story became an acclaimed documentary, Last Flight Home, written and directed by his daughter Ondi – one of the happiest bonuses EOLCCA has had in recent years.

These stories – of ways we are able to help, and to expand the benefits of end-of-life choice – are the extra joys that keep every EOLCCA volunteer’s spirits soaring.

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A lifelong newspaper and magazine writer, EOLCCA Board Member Fran Moreland Johns has published fiction, nonfiction, and several books. Her focus on end-of-life issues includes many volunteer years, numerous articles and one book, Dying Unafraid. She holds a BA in Art from Randolph-Macon Woman’s College, and currently blogs at Medium.com and franjohns.net. Her short story collection, Marshallville Storieswas released in April 2022.

EOLCCA supports a strong team of experienced volunteers throughout the state, ready to help anyone, anywhere in California free of charge with information and support regarding all end-of-life planning and choices, including aid in dying through the California End of Life Option Act. You can find comprehensive information on our user-friendly website. To support our work, or request an educational presentation, please visit ways to help Thank you.

Our First Line Phone Volunteers

Lynne Calkins remembers one call from a man whose terminally-ill father wanted to die – beginning a story that led to a movie. Last Flight Home, an acclaimed documentary released last fall, was described in one review as “boundlessly humane.” It’s a phrase that applies to the work of every first line phone volunteer who takes an incoming call to our number. 

First line phone volunteers, those who handle such calls and emails, are the invaluable gatekeepers to EOLCCA services. Calls come in – from the very ill, the troubled, the desperate, the anguished, and the curious – at all hours. They are responded to often within a very short time but always (when it’s after business hours) by the next business day.

Last year a total of 743 calls and emails were received and handled; an average of two inquiries per day or approximately 62 per month. The busiest months were January, August and October. A ‘staff’ of six trained first line volunteers divides up response duties, which means an average of ten new calls per week are handled by each volunteer. Calkins, the first line trainer, regularly reviews incoming messages on weekends and holidays too, in case an immediate response is necessary. “But thankfully, we have had no emergencies,” she says.

Each inquiry is unique

While few calls evolve into anything as dramatic as a documentary film, each is unique in its own way. Most commonly, that first call is simply “Can you help?” – but often it comes from someone in distress who heard about EOLCCA from a provider or after an online search. It’s the first line phone volunteer’s job to pick up on the caller’s needs as quickly as possible. It can be a big challenge to know what questions to ask and to listen carefully, but once front line training is complete each volunteer is prepared to meet it.

beth-macdonald-V2edkaIdMP4-unsplash (resized man on computer)


“I was worried that I might not be able to answer a question, or that there would be awkwardness on my part or the caller’s,” says first line phone volunteer Judith Bishop. “But that never happened. People have very straightforward questions, and are happy to talk. It’s just a matter of letting them know I’m available.” 

First line phone volunteers complete a two-week training on answering calls/emails and keeping records, in addition to the standard EOLCCA client volunteer training program. (Information is always confidential, but carefully recorded.) Calkins, a founding board member of EOLCCA, developed the training and frequently handles the inquiries herself. 

One recent day Calkins received a call from a woman with a terminal diagnosis who wanted to use the California End of Life Option Act. The caller was clear about her condition and her choice, but had no idea what to do, where to turn, what to ask her caregivers, how medical aid in dying works. Calkins was able to answer the caller’s basic questions and assure her that we would help her through her journey. During their conversation they talked about where the caller lived and Calkins realized an EOLCCA client volunteer lived nearby. Within hours she had made notes about the conversation, contacted the client volunteer manager and begun a connection between the two for more follow up support with a home visit if requested by the new client.

Services to all clients are free

While many calls are notable for efficient outcomes, others are more lighthearted. Bishop recalls talking with one clearly agitated woman with multiple questions and saying she’d get back to her first thing in the morning with more answers. “Oh no, dear,” said the now calmer caller, “I’m not a morning person.” Another caller, asking about costs of life-ending medications and medical care, commented, “You mean, I’ve got to pay to die?” 

EOLCCA’s services, at least – including 24-hour access to our phone line – are always free.

woman on phone
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A lifelong newspaper and magazine writer, EOLCCA Board Member Fran Moreland Johns 
has published fiction, nonfiction, and several books. Her focus on end-of-life issues includes many volunteer years, numerous articles and one book, Dying Unafraid. She holds a BA in Art from Randolph-Macon Woman’s College, and currently blogs at Medium.com and franjohns.net. Her short story collection, Marshallville Storieswas released in April 2022.

EOLCCA supports a strong team of experienced volunteers throughout the state, ready to help anyone, anywhere in California free of charge with information and support regarding all end-of-life planning and choices, including aid in dying through the California End of Life Option Act. You can find comprehensive information on our user-friendly website. To support our work, or request an educational presentation, please visit ways to help.  Thank you.

Last Flight Home

“It was like light from a lighthouse,” says David Timoner of the call he got from End of Life Choices California (EOLCCA) when he and his family were facing the toughest time of their lives.

“The wisdom we got from those final days we will carry with us forever.”

LFH Oscar shortlist pic

David’s 92-year-old father Eli was in the hospital. He had reached a point at which advanced COPD, CHF, and other health issues had become intractable and meant he would have to transfer to a care facility. But Eli knew he wanted to die at home surrounded by those he loved, and he asked about medical aid in dying. His family understood and supported his decision but didn’t know where to turn for help. Vaguely aware of a California law, they still had no idea what to do next.

“The day is a blur,” David says. “I think I googled something like ‘How to end your life legally . . .’ and EOLCCA popped up right on top. I called the number, left a message, and had a call back within the hour.” Lynne, the volunteer at the other end of the phone, was everything David needed at that moment: “Calm, empathetic, and with the answers to all of our questions. Lynne explained how the California law works and reviewed the eligibility requirements.” These, in brief, include the requirement that the patient must be diagnosed as terminally ill, with a six month or less prognosis by two doctors, must make the request himself, be able to self-ingest the medications, and be of sound mind. “Lynne also recommended that my father consider enrolling in hospice care,” David says. She was able to recommend two hospices in our area that she knew had doctors who participate in medical aid in dying. We chose one and brought Dad home.”
Ondi Timoner, an award winning documentary filmmaker, decided to record those days during the then 15-day waiting period mandated after Eli first requested aid in dying medication from the hospice doctor, until he could receive the prescription. She initially intended just to have a family remembrance. After all was over, however, she realized she had the makings of something important.

Ondi’s remarkable film, Last Flight Home, tells the full story. In the ensuing weeks, the Timoner family – Eli and his wife Lisa, their children David, Ondi and Rachel, their grandchildren and friends–would spend invaluable time at home together celebrating Eli’s unique life’s journey. The profound, intimate, loving farewell afforded Eli and his family by California’s medical aid in dying law, is the outcome we at EOLCCA wish for anyone who reaches out to us for similar help and information. That this Southern California family’s experience would be recorded by daughter Ondi and edited into a powerful documentary now being released to widespread acclaim, is a visual testament to the value of medical aid in dying.

At a screening in New York, daughter Rachel told a New York Times interviewer, “And then there is the idea that this film could change laws.” Many of us with EOLCCA worked hard to get the California law passed, and we continue to support expanding the law throughout the U.S. To have had a part in helping Eli Timoner and his family gain peace at his life’s end, and to know that they now join the fight for everyone to be able to make such a choice, is doubly gratifying for EOLCCA.

California is one of a small number of states fortunate to have a law which enables its residents to access this compassionate end-of-life option for the terminally ill. But, from call after call we receive every day, it’s clear that few terminally-ill Californians are even aware of the law, or know enough about it to even begin the process of requesting medical aid in dying from their physician.

Last Flight Home is a film we hope will receive all the top accolades in the film industry for its many-layered and beautiful story. The story behind the film has been well documented in the New York Times. It is one we urge our readers to see as soon as possible and then recommend to friends and family everywhere.

‘Last Flight Home’ is a film we urge our readers to see and recommend to friends and family everywhere.

EOLCCA Lynne with 'Last Flight Home' Director Ondi Timoner and family

From Left to Right: Lynne Calkins with Ondi Timoner, Rachel Timoner, and Lisa Timoner at a recent screening

Asked for advice she might now pass on, Ondi says simply, “Be with your loved ones now. Don’t wait for them to be dying. But there is an incredible quality of life when a person is transitioning. The wisdom we got from those final days we will carry with us forever.”
Perhaps the most profound lesson Eli’s family learned was the simplest. It has to do with summing up life itself – as we humans do so often by looking at accomplishments and honors and all those treasures we accumulate. But no, says Ondi Timoner as she reflects on her family’s journey and the creating of Last Flight Home.

“Look at it as a way to measure our lives,” she says. “Measure our lives with love.”

We hope Last Flight Home will reach the countless families and individuals in situations similar to that of Eli and his family, so that others may learn about the California law in time to make a difference in their own end of life if facing a terminal illness. Our EOLCCA volunteers are always ready to help. Call us at 760-636-8009 or visit our website.

Click here for more information about the film director, Ondi Timoner, and Interloper Films.

Click here to stream it on Paramount+ 

Paramount+ logo

 

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A lifelong newspaper and magazine writer, EOLCCA Board Member Fran Moreland Johns has published fiction, nonfiction, and several books. Her focus on end-of-life issues includes many volunteer years, numerous articles and one book, Dying Unafraid. She holds a BA in Art from Randolph-Macon Woman’s College, and currently blogs at Medium.com and franjohns.net. Her short story collection, Marshallville Stories, was released in April 2022.