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Thanksgiving. Giving Thanks. Giving. Thanks.

by | Nov 19, 2023 | Inspiration

There are so many inspirational quotes and phrases about Thanksgiving focusing on gratitude and thanks, one quote from Erma Bombeck stands out to me: “I come from a family where gravy is considered a beverage.”

Ok, maybe not the most consequential thought, but as we at End of Life Choices California (EOLCCA) consider our work around the weighty (Thanksgiving meal pun alert!) issues surrounding death and dying, living and dying with dignity, and controlling our own fate, it’s important to remember that sometimes humor –  puns, physical humor, even gallows humor – is something that can sustain us during difficult times.

Particularly during the holiday season, as our thoughts often turn to loved ones no longer with us (family, friends, Dick Clark on New Year’s Eve…), we encourage you to take a moment to recall a heart-warming and humorous memory of a loved one and appreciate the smiles and joy shared.

Thankful

We are thankful for the many people associated with EOLCCA:

    • the hundreds of Californians who have reached out to us this year for information, guidance, and support as they or a close friend or family member seek control and dignity at the end of their lives.
    • the over 45 Client Volunteers throughout the state who are there every day to answer questions, guide people through their end-of-life journey, and even be present at their bedside as a knowledgeable and calming influence on the day of a planned death.
daughter and father
    • the health care, hospice, and medical professionals who refer their patients and clients to us for additional information and support.
    • our donors, who allow us to keep the lights on, raise awareness, and continue to provide these important services, all provided at no cost to the client.
    • our board members who work hard to keep us on track and all contribute their time and talent serving on one committee or another. 

The pyramid falls without the strength, compassion, and support from each of these groups.
A collective THANK YOU to all of you!

Looking Ahead

In giving thanks for what has transpired over the last year, we also turn an eye to the future. For us, that means:

  • developing and offering an Advanced Training to certified Doulas from anywhere in the country on all the end-of-life options, including Medical Aid-in-Dying
  • recruiting and training more volunteers to serve the increasing demand for our services in more rural and medically underserved areas of California
  • expanding our speaker program to hospice staff and to the community at large
  • screenings of relevant movies to provide education and information to the general public about medical aid in dying.

During this season of Thanks, we also ask you to consider Giving.

We are a small but growing organization so every donation counts and is impactful!  You can make a secure online donation here or you can send a check to 153 S Sierra Ave #30, Solana Beach, CA 92075.  We can also accept donations of stock (a good tax strategy if applicable to you) or from your Donor Advised Fund.  We are a 501c3 nonprofit organization, Certified GuideStar Gold, EIN 83-3560210.

Thank you

One final Thank You to YOU for reading!

On behalf of the Board and Staff of EOLCCA, we all wish you a peaceful and fulfilling holiday season, however you choose to observe,

Judy Epstein
Executive Director


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. EOLCCA is a 501(c)(3) non profit organization and we rely on donations from individuals and foundations. To support our work, or request an educational presentation, please visit Ways to Help.  Thank you!

New Report on Medical Aid in Dying in California

by | Aug 15, 2023 | Informational

We are pleased to share with you the California Department of Public Health’s (CDPH) newly published 2022 Data Report on the use of the state’s End of Life Option Act (ELOA).  The report reflects several key changes that went into effect on January 1, 2022 (via Senate Bill 380) that made the law more patient-friendly in allowing physicians to prescribe medical aid in dying (MAiD) for their terminally ill patients who are eligible under the law. 

One critical provision that went into effect shortened the waiting period from 15 to 2 days (48 hours) between the two oral requests required of the patient to their physician for a MAiD prescription. EOLCCA strongly supported this modification as many terminally-ill individuals who wished to use MAiD endured unnecessary suffering that the law (originally passed in 2016) was specifically intended to alleviate. In this new report, we are gratified to learn that:

“Out of the 1,204 individuals who started the end-of-life option process in 2022 and received a prescription during 2022, 947 individuals, or 78.7 percent, waited less than 15 days between the two verbal requests.”  

Almost 50 percent increase

Equally important to EOLCCA is the fact that the number of people who obtained a MAiD prescription increased by almost 50% compared to 2021. Universal knowledge that California has this law is a critical missing element that persists as a major roadblock for those who might request medical aid in dying. 

Too many people who might qualify remain woefully uninformed about the possibility of MAiD at key health care decision points in their end-stage terminal illnesses.

One of EOLCCA’s primary objectives is to continue to reverse that trend through comprehensive targeted education programs about the ELOA to hospices, medical practices, diverse local community organizations, houses of worship, and retirement communities. This year alone, our Speakers Bureau has already provided 42 educational presentations around the state. Please visit our Speakers Bureau webpage to learn more about this program.

volunteer at bedside
More good data

Several other data points of the report include: 

  • The vast majority (over 95%) of those who used MAiD in 2022 were receiving hospice and/or palliative care.
  • Those who utilized MAiD were numerically more white and had completed more education than the state’s diverse population. This is an area of extreme importance to EOLCCA as we work to expand our outreach and education efforts. 
  • About one-third of the people who receive a prescription never use it. 

To this last topic, anecdotal evidence we’ve accumulated through our counseling of scores of patients, indicates to us that having the prescription in hand has its own palliative effect, giving a measure of comfort and control to the patient. As a result, their anxiety goes down, their pain level goes down, and they are more able to relax into their dying process and never feel the need to take the medication. What a wonderful gift for people to have. 

I encourage you to read the report for yourself. It discusses in much more detail what peoples’ diagnoses were, their demographics and many other interesting factors. The report can be accessed here.

The report also showed that 84.5 percent of those who utilized MAiD in 2022 informed their family of their decision. In keeping with August designated as National Make A Will month, if you need assistance in preparing your own Advance Care plans, to better inform yourself or facilitate end-of-life discussions with your loved ones, please contact us.

In conclusion, while the results of this report show some encouraging advances, there is still much more work to be done. If you wish to inform, educate and help more terminally ill people access a peaceful death on their terms, please learn more, volunteer, or consider supporting our work by making a donation here. 

End of Life Choices California—Here for You

by | Jul 25, 2023 | Featured, News, Video

Watching things bloom this time of year makes me think a lot about End of Life Choices California and how we too are growing. 

I am pleased and honored to share that I am no longer the “acting volunteer executive director” which I have been since our humble beginnings, as the Board of Directors recently voted to appoint me as our official Executive Director.

When the other founding directors and I started EOLCCA back in the spring of 2019, our vision was to help people access a peaceful death. Big vision! We were driven by the daunting realization of how few people, doctors, and hospices knew about California’s at the time newer End of Life Option Act legalizing medical aid in dying (MAiD), as well as all the other end-of-life options.

On our YouTube channel

As part of our ongoing effort to educate the public and health care providers about the law, we have created a short video designed to reach a broad audience. I am delighted to share it with you here.

Please take 3 minutes to learn about the positive impact we have on peoples’ lives.

I invite you to share it with your own networks so more people can be aware of this law and how to reach us.

To educate and empower

We continue the work we started back in 2019 with high hopes and dreams of continued growth and the ability to reach, educate and empower Californians so they know what all their end-of-life options are, and how to access them. One of our greatest satisfactions has been the specialized presentations we have provided to hospices. We have had the privilege of providing education to dozens of hospices throughout the state – from their MDs, RNs and MSWs to their bereavement counselors and volunteers.

To schedule a presentation, please contact our Speaker’s Bureau coordinator at speaker@endoflifechoicesca.org

Dedication

Day to day, on the ground, our dedicated cadre of Client Volunteers provide the backbone of our operation. In 2023 alone, we have already fielded calls and emails from nearly 500 people. Our amazing volunteers offer support and guidance to empower individuals to navigate the medical system and effectively communicate their end-of-life wishes. We have built a rich resource center over the years so they can provide information about physicians willing to prescribe MAiD, supportive hospices with physicians who prescribe MAiD, and other pertinent support services in their community. In addition, our volunteers are skillfully trained and honored to be present bedside to support the family or loved ones on the day the client chooses to take medical aid in dying.  

“During a period of time when we were in desperate need of guidance and information and a resolution, we came across the organization (EOLCCA) and it helped us every step of the way.”

— Matt Mayerson, family member

Matt Mayerson

Sharing and giving

We are so grateful to the many supporters of EOLCCA who are helping us reach a larger audience by sharing our video widely. For more information about how you can support our mission through a tax-deductible gift, please visit our donation page.  Every donation, large and small, is deeply appreciated and helps us reach more people to ensure they are able to access the end-of-life care and dying that they want.

In the words of Henry David Thoreau, “…one must maintain a little bit of summer, even in the middle of winter.”  We feel the work we do provides just that: brings the lightness of summer to an often-wintry time for those facing the end of their lives. 

Best wishes for a lovely summer.

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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!

A Good Year

by | Dec 12, 2022 | Inspiration

As 2022 winds down, I want to wish all our friends and supporters a happy holiday season and a wonderful New Year. I always find it illuminating to look back and review where we’ve been and what we’ve accomplished every year. I am pleased to share my thoughts with you again as we look forward to 2023.     

For a little historical perspective, the Founding Directors of EOLCCA came together with a dream, WAY back in early 2019. After the California End of Life Option Act (ELOA) passed, we each realized there was a huge unmet need to provide the people of California with information and support about end-of-life choice. We talked to our good friends at End of Life Choices Oregon, to see what they had done and how they had gone about starting a nonprofit to meet this very real need. We were told “OMG, don’t do it! It is a TON of work!!”.  Well, that didn’t stop us – it only lit our fire and got us going! And yes, it has been a ton of work. But it has been a labor of love with no regrets, and we all continue to be grateful to be a part of this growing, thriving nonprofit organization and community. We have now poured a foundation, put up the walls and a roof, and are starting to put in the windows and doors. It is a very exciting time for End of Life Choices California.

New Staff

One of the things I am most personally pleased about is the recent hiring of our first Executive Director, Cindy Lauren. She started a few weeks ago and we are already feeling the great benefits of adding her to our team. Cindy brings an invaluable depth of experience from years working with other health-related nonprofits in leadership roles. She has a keen understanding of capacity building, fundraising, growth management and volunteer programs. We are super excited to have her on board and you will be hearing from her soon. You can read about Cindy here on our website. Welcome, Cindy!

We also had another amazing new hire this year, Steffany Lohn, our Client Volunteer Program Manager. She comes to us with years of experience managing volunteer programs in direct service organizations. She has taken to End of Life Choices California like a duck to water, and we are delighted to have her on our team as well. You can read more about Steffany here on our website. Great to have you with us, Steffany!

Dedicated Volunteers

This year we enhanced our programs enabling our more than 40 volunteers to expertly manage over 700 direct inquiries from the terminally-ill and their families seeking help navigating their end-of-life choices. Physicians and social workers call us frequently for information on how to work with the California End of Life Option Act and we are honored to be able to support them in their work with their patients and often our clients.  More than 17,000 new users came to our website this year, up from 13,000 in 2021, as a result of our growing social media presence and focused outreach to senior living communities, LGBTQ groups, and religious institutions seeking to learn more about end-of-life options and the California ELOA.

pictured below right, SoCal Volunteers and below left, NorCal Volunteers

SoCal brunch
EOLCCA NorCal volunteers in Dec 2022

Our volunteers also provided numerous education programs (in-person and on Zoom) specifically geared to equipping both nonprofit and for profit hospice staff with the information they need to help their patients access the ELOA, and gave interviews and educational presentations in Spanish to the Latinx community. Our goal is to improve inclusivity and equitability to  marginalized populations that might not have access to great, or even adequate, end-of-life information and medical care. 

Having Options

That being said, I feel it is always important to remind people that we are not attached to any particular end-of-life path or outcome for any of our clients. There are MANY end-of-life options. The majority of the people who reach out to us are primarily interested in medical aid in dying. But sadly, many people still don’t qualify and we provide information and support on all the other end-of-life options. We continue to feel this work is vital and we will never only talk about medical aid in dying. Everyone, no matter their situation, deserves to have all the information available to them to make the choice that is right for them, and it is our commitment that everyone has access to this information.

Last Flight Home

Also this year, we were thrilled to see the launch of the award-winning film, ‘Last Flight Home’. It focuses on ailing Eli Timoner’s extraordinary life, as well as his ultimate wish to have a peaceful death with family by his side.  Searching for options for Eli, his son, David, quickly found EOLCCA’s website and called.  

Lynne Calkins, an EOLCCA Founding Director and volunteer answering the phone that day, took that call.  She was able to counsel David by explaining about all the end of life options his Dad might consider in his situation, including going onto hospice and requesting medical aid in dying under the California ELOA.  At his request, Lynne was able to give David the contact information for several hospices servicing his Dad’s home area, which she knew participated in the ELOA. This was possible thanks to the confidential in-house resources carefully built and maintained by our volunteers to help our clients obtain needed information quickly. (Lynne pictured at left with Ondi Timoner at a fall screening of the film.)

Lynne and Ondi at Santa Monica screening

The ‘Last Flight Home’ is a testament to the value of the California ELOA and to having access to factual information about one’s end of life options. The film is an excellent vehicle to raise needed public awareness nationwide about all the ways medical aid in dying laws enable peaceful death for both the terminally ill and their loved ones. It is absolutely a “must-see”!

You Make All This Work Possible

We are very proud of the work we do and are committed to expanding our impact throughout the state. The majority of terminally-ill Californians still do not know about the End of Life Option Act nor about what end-of-life options are available. Because of your belief in our mission, we have been able to keep our commitment to provide educational presentations as well as all services to clients and others at no charge, ensuring accessibility to all. As the year closes and you consider year-end donations, we hope you will consider making a gift to EOLCCA today; we rely on the generosity of caring people like you to make this work possible. Please know how thankful we are for your interest and support. 

In closing, I send out heartfelt thanks, as always, to our amazing Volunteers and our Board of Directors. We have made it a practice to be a working board, and we offer our volunteers many different ways to be of service in supporting our organization. Everyone jumps at the opportunity to keep the momentum going. And we have been very successful. We couldn’t help as many people as we do, and spread the word as wonderfully as we do, without them. Thank you.

Blessings to you all.

Happy Holidays and Happy New Year,

Judy Neall Epstein
President, Board of Directors

In Love, A Memoir of Love and Loss

by | May 9, 2022 | Book Review

I often receive requests to read and review books. As a result, I have quite a pile of books on my nightstand. And as an avid reader, this is a lovely problem to have. Amy Bloom’s book, In Love, came to me through a different channel. One of our esteemed board members, Fran Johns, recently wrote a commentary of the book that was published in March 2022. I read it, it piqued my interest, and I got the book.

Interestingly, I had just finished reading Still Alice, by Lisa Genova, and then watched the movie again. It had been a few years since I’d seen it and wanted to watch it after reading the book. An excellent story. So my brain was primed for Alzheimer’s disease (not literally!) when In Love landed on my nightstand.

 

Few Available Choices

I have been interested in, concerned about, and curious about Alzheimer’s disease for decades.  When I was in private family practice many years ago, I walked that path with quite a few patients and no matter what anyone tried, we really could only provide comfort care. Still Alice and In Love both depict the almost unbelievable devastation of Alzheimer’s disease. Not only to the patient, but to the family as well.

I thought Amy Bloom did a heart-wrenching job of sharing the experience of watching her beloved start to show early signs of the disease, becoming aware of the probability of the disease even before diagnosis, and finally accepting a clear understanding of what was happening and had been happening for years. She and her husband, Brian, were very brave as they confronted the issues and choices available to them based on their preferences and values.

Threading the Needle

I loved how personal the book is. I ached for them as they made plans, and then more plans, for Brian to find his peaceful death. I felt sad that they were unable to find that peaceful death in their own home and had to go to Switzerland to find medical aid in dying for early Alzheimer’s disease. As someone who has worked in the field of end-of-life care for over ten years now, it was still shocking to me to read her words about how poorly the US has constructed any kind of system for compassionate end-of-life choice. Yes, some states have medical aid in dying laws that allow physicians to legally prescribe medication to end a life. And people in those states are grateful for the choice.

But, as Amy Bloom said, accessing those laws is like ‘threading the needle”. Only a very specific cohort of patients are able to meet the requirements to access the law. A person must a) be mentally capable and understand the ramifications of the choice, b) be an adult and have a terminal diagnosis (life expectancy of less than six months) made by two physicians, and c) be able to self-administer the drugs.

 

In Love, A Memoir of Love and Loss, book cover
Walking Through This Process

Of course, many people, particularly those with terminal cancer, are able to access the law under these parameters with relative ease. They still, however, need to find a doctor who will prescribe the medication. Many people don’t, or can’t, find a physician to prescribe because they live in a rural area, or their own doctor either doesn’t know how to prescribe or doesn’t want to. The law allows for that. I am grateful to be part of EOLCCA as we continue to help people, at no charge, to walk through this process and overcome barriers they might run into. You can read about our services here.

For those who are not eligible for medical aid-in-dying and don’t wish to go to Switzerland, there are other end-of-life choices. We outline them here on our website and discuss these with clients all the time. One of those choices that people find most interesting is Voluntary Stopping Eating & Drinking (VSED), though it  is not everyone’s cup of tea, as Amy Bloom discussed. This is totally understandable. However, we have supported many people through VSED and with adequate support and understanding, it is often a very approachable way of embracing nature’s authentic way of dying. It is seen in many cultures and in the animal kingdom as well. For some comprehensive resources on VSED, click here.

I applaud Amy Bloom’s courage in supporting her husband’s wishes to leave this world in his own way, in his own time. What a beautiful gift she gave him with that support. And what a beautiful gift to us all with this lovely book. Thank you.

End of Life Choices California is a 501(c)(3) nonprofit organization that provides its services of support and information at no charge to our clients. If you would like to support our work, you can do so easily by clicking here. We are grateful for all gifts, large and small.

Please keep an eye out for next month’s blog post by one of our volunteers about dementia and the Dementia Directive.

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