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A Good Year

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

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.

Looking Forward in 2022

This month, End of Life Choices California (EOLCCA) celebrates the completion of three years of service to the people of California.

Dear Friends and Supporters,

I am proud to share with you our accomplishments in 2021 and our vision for 2022.

EOLCCA volunteers worked diligently throughout 2021 to provide Californians the information and support needed to successfully navigate their legal end-of-life options. At the same time, we have been busy developing plans to expand our programs and services in 2022.

Today I am asking for your help.

Belief in our mission

Many of you have already offered your support in word or deed, and we thank you with gratitude for that support.

Because of your belief in our mission, we have been able to keep our commitment to provide educational presentations as well as services to clients and others at no charge, ensuring accessibility to all.

California poppies

In 2021, our Client Volunteer Program:

      • Onboarded and mentored 26 volunteers throughout the state who provide extensive phone support and client counseling, as well as bedside attendance for aid-in-dying;
      • Responded to and counseled 676 individuals and their families who reached out to EOLCCA for support, information and guidance;
      • Were present bedside (and even Facetime) for 8 clients who died peacefully with the support of our experienced volunteers;
      • Provided 24 presentations to community-based hospices and retirement communities about end-of-life issues and medical aid in dying;
      • Educated 12 physicians/pharmacies new to medical aid in dying who reached out to EOLCCA for our expertise.  These medical professionals are now prepared and available to provide medical aid-in-dying services to the terminally ill.
      • Tying this together is our user-friendly website, packed with information, which garnered more than 17,000 visitors in 2021 and over 1,000 followers receive our communications across various social media channels.

Expanding Our Impact

We are proud of our volunteers and of our accomplishments.

In 2022, we 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.

This year EOLCCA will work to reach out to historically underserved communities, specifically communities of color and in rural areas. To this end we are actively seeking and recruiting multicultural volunteers to help provide end-of-life information and services to ALL Californians. Our goal this year is to expand our volunteer base while also providing educational programs in more underserved communities.

We need your support to make our work possible!  Please click here to make a contribution now.  Your gift at any level will help us expand our reach into communities where the need is great. Thank you for your continued commitment to our shared vision of a dignified death for all.

With gratitude,

Judy Neall Epstein
President and Founding Director
End of Life Choices California

Major Improvements to the End of Life Option Act

EOLCCA is thrilled to share the long-awaited news that yesterday, October 5, Governor Gavin Newsom signed Senate Bill 380.  This new law makes some badly needed adjustments to the existing End of Life Option Act in California, which was signed into law exactly 6 years ago on that very date by then Governor Jerry Brown.

These new provisions will become effective on January 1, 2022. Here is what will be different for anyone seeking Medical Aid in Dying in California in less than three months from now.

  • The new bill reduces the onerous 15-day waiting period between the required two oral requests, to 48 hours.  This is a big change and will help many people access the law who couldn’t previously.
  • Healthcare systems and hospices will now have to post their aid-in-dying policies on their websites. This will be extremely helpful in guiding people as to where they choose to receive their healthcare, especially if they are very sick or terminally ill and wish to request medical aid in dying.
  • The final attestation form will be completely eliminated.  This was a document that the patient was expected to fill out and sign within 48 hours prior to taking aid-in-dying medication.
  • If a terminally ill patient requests medical aid in dying and their physician does not wish to participate, the physician will be required to tell the patient they will not support them.  AND, the physician must document the request in the patient’s medical record and transfer the patient’s medical records upon request.
  • The amendment also clarifies that medical aid in dying medication can be taken within a healthcare facility.

We applaud Senator Susan Eggman for her dedicated leadership on this important issue and all California lawmakers who voted for this new measure, as well as Governor Newsom for signing this amendment into law.

Advance Directive: Part 2

For our fourth week in April honoring National Healthcare Decisions Day (April 16), we will complete this series by discussing two additional topics that can be added to an Advance Directive as addendums.  Both are important and worth discussing.  So, let’s get started.

POLST

POLST stands for Physician Orders for Life-Sustaining Treatment. In some states it is called a MOLST (Medical Orders….).  In California it is a POLST.  This is a document that is signed by you and your physician.  Most physicians will not be interested in signing this form with you until you are seriously ill enough that you might not be able to make medical decisions for yourself.  Once completed, this form should be kept near the patient and be readily accessible to emergency medical personnel, assisted living facility staff and other caregivers. The form should follow a patient from home to emergency services, and to a hospital or other facility. 

Dr. and patient signing paperwork

 

This document/form is unusual in that it is almost always bright pink (but it does not have to be).  Here is a link to California’s POLST form.  The purpose of this bright color is so that the form can be easily found in the home (generally on the refrigerator or on the back of the front door) by emergency personnel or others who need to know right away how to care for you in the event of an emergency. 

Dementia Directive

Dementia Directive is a communication tool. It provides a way to share your views with loved ones, to let them know what you would want in case they have to make medical decisions on your behalf.  Families often face making difficult decisions about their loved ones’ care. This directive can help them feel more sure that the decisions they are making are closer to what you, their loved one, would have wanted.

This directive is not yet considered a legal document.  It is purely an opportunity for you to outline what your preferences are should you become unable to make decisions for yourself due to dementia or other brain-related disease.

 

 

latino couple reviewing AD document

Many of us have clear ideas about the kind of medical care we would want if we developed advanced dementia. This directive can lessen the chances that you might get more medical care – or less medical care – than you would have wanted if you develop dementia.

 

We have more information on this topic here on our website.  There also are links to other organizations who have developed excellent Dementia Directive forms and are well worth perusing.

End of Life Choices California has trained, able and willing volunteers who are happy to walk through these forms with you, how they work, and how they might fit in your situation.  A simple phone call (760-636-8009) can put you in touch with one of these wonderful people.  

THANK YOU if you have taken the time to read our weekly blog posts about Advance Care Planning this month.  We did it because we think this is such an important part of planning ahead, and ultimately to have the end of our lives be exactly how we would want them to be.  For most people, the primary wish is for a peaceful, dignified ending.  These Advance Directive forms and addendums are a strong beginning to that process. 

Also, please know that we are completely volunteer-run and do not receive any funds from state or government agencies.  We rely on the kindness, compassion and generosity of our reading public and those families we can help when their terminally-ill loved one is trying to achieve a peaceful death.  Please open your hearts and send us a donation, no matter how small or large.  It all helps tremendously.