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.

++++++++++

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!

End Well Symposium November 16, 2023 in LA

End of Life Choices California is pleased to introduce you to End Well, a nonprofit dedicated to transforming end-of-life conversations. End Well’s upcoming November 16th symposium in Los Angeles brings together experts, celebrities, and caregivers to discuss end-of-life experiences, grief, and healing.

As a nonprofit, EOLCCA has been offered this link for you to access discounted tickets.

  ————————————————–

End Well 2023: It’s About Time
Not Just a Symposium. A Revolution. Break the conference mold and leave not only informed but transformed. Be part of the seismic shift to make end of life, part of life.Thursday, November 16, 2023Skirball Cultural Center
2701 N Sepulveda Blvd, Los Angeles, CA 90049
8am – 6pm25 curated talks one 1 main stage:
We spotlight pioneering minds and offer them a platform to take their ideas to the next level with fresh talks or in unexpected conversations. We are known for identifying emerging talents who soon capture global attention and this year promises the same.

Mingle at Lunch and After-hours:
The most cherished aspect of our experience? The serendipitous lunch. Enjoy an outdoor lunch with thoughtfully curated conversations and an engaging lunch host, fostering genuine connections on a topic of your choice. As the sun sets, we’ll guide you to a reception to mix and mingle with speakers and fellow attendees.
Wondering if this event is for you?  Everyone is invited to attend, whether you’re an expert or just passionately curious.
To view symposium speakers, visit our website.
The logistics:
End Well will take place at the Skirball Cultural Center. Plan on a day beginning with a continental breakfast at 8:00 AM and concluding with a reception at 5:30 PM.
Tickets
Registration includes access to all programming on November 16th, as well as continental breakfast, lunch and cocktail reception.

Gifts & Lessons Learned Through Loss

Note: Alison Clay Duboff is a volunteer with End of Life Choices California. Her husband used medical aid in dying on August 3, 2021. Here are some of her reflections after going through the experience.

As sentient beings, we attempt to find meaning in loss. We desperately search for celestial answers to the mysterious reasons “why” to assuage our pain. 

Occasionally a purpose, an enlightened drive, arises from the ashes of grief, bringing meaning to the unimaginable. And that is the true gift.  

Through the loss of my terminally-ill husband, I found that my bestowment was writing. Be it scratching words across a page, speaking into my telephone when the words hit me at inconvenient moments, or sitting at my computer and letting my fingers loose amongst the letters on the keyboard. 

Writing not only brought me immeasurable pleasure and release, but it took on a life of its own and began helping others in my same situation as I shared my innermost, deep, dark, and light emotions to my community online.

This newfound vehicle of helping others morphed into being compelled to help as many people as I could and that is how I became a mouthpiece for personal choice and a volunteer for End of Life Choices California. I’m pleased I strongly encouraged the agency to start a bereavement group for families that used medical aid in dying.

A few times every week, people will stop me on the street and ask me if I am “Alison,” the lady who lost her husband. My collection of words has reached people near, far, and have brought comfort and understanding or a sense of mutual understanding, of being heard, and for me this is the greatest legacy I could have ever imagined or asked for. 

I have learned that the simple gift of a hug from a stranger, or to a stranger, is a beautiful thing in and of itself; surprising and deeply fulfilling, I call it, “humanity.”

I’ve learned repeatedly during my period of grief that people need and seek connectedness and are able to exchange energy even when the topic is uncomfortable.

We are slowly coming out of the dark ages of denial and into the light where we accept the ominous elephant in the corner of the room: Everyone will die, yet when those we love pass away, we are taken aback, surprised and shocked. 

I yearn to help others recognize that the day, the year, or the manner of death might be shocking and unexpected, yet death will come often when we least expect it, too often when we are completely unprepared for that inevitability. But with exception, and if fortunate enough, like my husband, one can choose the day, date, and time of death.   

I see the inevitability of death hiding behind the curtain on opening night. Death is there waiting backstage for the curtain to be pulled apart and to make its grand entrance. If we can learn to entertain the notion that our time on earth is transient, I believe we will live the remaining balance of moments in a much more gratitude-filled existence.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++

Alison Clay Duboff is an active real estate agent in Manhattan Beach. She’s the author of Living with Veracity, Dying with Dignity, a book about the experiences with her husband. The book is available on Amazon.

EOLCCA manages a strong team of experienced volunteers throughout the state. We are available to help individuals and their familes in California, free of charge, with information and support regarding all end-of-life planning and choices.  This includes medical aid in dying through the California End of Life Option Act and bereavement support and resources. Find comprehensive information on our user-friendly website. To support our work, or request a speaker, please visit ways to help.  Thank you.

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.

+++++++++++++

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.

Making COVID Lemonade


As I contemplate life on my porch in late-May 2020, I feel many different emotions.

 

As a nursing home and hospice physician, I mostly feel sad that so many of the people I care for are dying—often without the basic comfort of a family member at the bedside. I also feel concerned and sympathetic for those whose lives have been—and will continue to be—devastated by either the loss of a loved one or the loss of their jobs, mortgages, businesses, and the familiarity and comfort of ordinary life, which may never be restored.

I feel guilty that my dogs, who used to accompany me to work in the nursing homes every day, are not allowed to go with me now for obvious reasons. I am angry at the lack of a defined, dedicated response from our government to protect these precious vulnerable elders. I am distressed by the polarization of our population, the venom that is spouted based on political differences, the baffling anti-science movement, the baffling politicization of things seemingly as neutral as a drug, and the seeming irrelevance to some people of facts. And although we keep hearing this is going to be a marathon, not a sprint, I have the sense we are not far out of the starting gate, I already feel exhausted. With Zoom meetings all day, nonstop news coverage, and a constant stream of new information in the scientific literature, it seems like it’s all-COVID, all the time. And I feel a little guilty that for my family and me, this pandemic is mostly an inconvenience and not something that will wreck our world or create an enduring hardship.
lemonade

I am an Optimist

At the same time, as an optimist, I am trying to make lemonade out of all this. What might we gain from this pandemic? There are obvious tangible gifts, like the favorable impact on the environment. People have learned the importance of handwashing and how to do it correctly. The “great pause” has given people the chance to take stock, reflect, hold space, and perhaps appreciate some of the small things we usually take for granted. We have learned how to use digital technology more widely for virtual doctor visits—even palliative care visits and end-of-life advance care planning discussions—and for professional meetings, webinars, town hall meetings, and the like. When we are practicing social distancing, it is clearly a blessing to be able to commune with others even without the actual physical hugs and handshakes (which may become a thing of the past, sadly). Support groups like 12-step meetings (AA, NA, etc.) now have a large online presence that is invaluable for those practicing recovery from addictions. For health care professionals, online support for burnout is also available.

We have also seen a huge outpouring of charitable work of all kinds, and the heroic contribution of first responders and healthcare workers, who put their own health on the line in service to others—like the certified nursing assistants who work for close to minimum-wage salaries, doing the backbreaking but essential work of providing direct care to debilitated, frail, dependent elders and other chronically disabled individuals. Now more than ever, their efforts should be appreciated and celebrated. 

Advance Care Planning

And during this time when we have more family time (either in-person or virtual), and when people of all ages are dying of this virus, I know more families have taken advantage of the down time to reminisce about loved ones who have already died and to discuss their own beliefs, treatment preferences and what is really important to them. It is the perfect storm for advance care planning! There are many online resources to help families broach these subjects and have deep, meaningful and often healing conversations. With its devastating pulmonary effects, COVID has helped make discussion of intubation and mechanical ventilation more of a household subject. I’ve had multiple conversations with nursing home residents about their treatment preferences, and some of them now say, “If I got the coronavirus, I would not want to be put on a ventilator.”

lemonade

These are difficult times, and this is a cruel pandemic in many aspects—and we will continue to suffer the direct and indirect consequences for a long time to come. But over time, as the dust settles, I am confident that we will have learned some lessons and will come out of it changed for the better in many ways. Let’s be kind to one another, tell our loved ones we love them, we forgive them, we ask their forgiveness, and we treasure our relationships with them.

That is certainly a half-full glass of lemonade, right?  We will get through this together.


Karl Steinberg, MD, CMD, HMDC

Dr. Steinberg has been a hospice and nursing home medical director in the San Diego area since 1995.  He is president-elect of AMDA – The Society for Post-Acute and Long-Term Care Medicine, a past chair of the Coalition for Compassionate Care of California and past president of the California Association of Long-Term Care Medicine.  He is vice president of National POLST and sits on the National Quality Forum’s Geriatrics and Palliative Care Standing Committee, is a certified healthcare ethics consultant, nursing home medical director and hospice medical director.

We appreciate working with Dr. Steinberg on end-of-life care issues and look forward to our continued partnership with the San Diego Coalition for Compassionate Care.  (Dr. Steinberg is pictured above with his wonderful Tessa, Charlotte and Josie.)

Photography by Ghislaine Guerin and Chris Montgomery.