REQUEST SUPPORT | DONATE | BLOG

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

Honoring National Healthcare Decisions Day

Most of the work we do at End of Life Choices California involves talking with people about dying: addressing their fears, providing support with problem solving, helping them access the resources they need to plan for the kind of death they wish for.  Some people might find this kind of work challenging and even distasteful.  But we love it. 

We TALK about it!  So many people have said something to our volunteers along these lines:  “Thank you for your honest and frank conversations with me. No one has been willing to have them and I am so grateful and feel free from worry now.”

 

Talking to family about end of life choices

Another important aspect of our work is helping people do the necessary preparation in case of a medical emergency, or diagnosis of a serious or terminal illness.  This process is called Advance Care Planning.  We teach seminars on this and enjoy educating people on how to plan ahead.  

One thing people often don’t know or think about is this is important for EVERY PERSON OVER THE AGE OF 18.  All adults should have an Advance Directive and have shared it with their important people. 

A Gift to Family

Talking to family about end of life choices

Therefore, in honor of National Healthcare Decisions Day, on April 16, we are devoting the entire month of April to paying attention to these important matters.  Every week we will post a new blog on a different but related topic on Advance Care Planning.  If you read every one, at the end you will be an expert!  

Please join us in these important discussions.  

To find out more about Advance Care Planning on our website, go here.

To find out about volunteering with our organization, go here.

To make a donation to support our important work, go here.

 

Medical Aid in Living

People seeking MAID are vibrant, courageous, and thoughtful. They know who they are, define the rules of their life, and are clear on their values, including the meaning of living. My last visits with them are typically marked by a sense of clarity and peace.”

 

Benzi M. Kluger, MD, MS, Medical Aid in Living
JAMA Neurol. Published online August 24, 2020

Dear Readers,

We are sharing this excellent article from JAMA Neuro, recently published online, because it is a beautiful tribute from a physician to medical aid in dying (MAID).  For many people there is so much mystery about the process of medical aid in dying.  For some, as with any uncertainty, this can bring anxiety and fear to the table.  As someone who has worked with people facing their dying for nearly ten years, I never cease to be moved at witnessing the grace, courage and honesty that people show when facing end of life decisions. The author of this piece does a beautiful job of describing not only his patient’s journey in accessing medical aid in dying, but also those of others.

I had the honor of speaking to a young woman recently who reached out to End of Life Choices California.  At 35 years old, she is bravely facing a Stage IV breast cancer diagnosis for which she has been told there is no cure.  She is just realizing that she not only needs to plan her life, but needs to plan her death.  We discussed many things, but the one thing that I think brought her comfort was hearing about what it is like to actually die from taking a lethal dose of medication through MAID.  I shared with her that through the many experiences I have had over the years of attending MAID deaths, the overarching feeling I have always observed and experienced is one of peace.  When people who are already dying are given the chance to be in the driver’s seat of their experience, rather than allowing the disease to wreak havoc in their lives and the lives of their loved ones, there is a peacefulness that comes with that.  Family is present, love is shared, goodbyes are heartfelt.  The person dying is able to relax and be held in love as they die.

What more could any of us want, truly?

peaceful river scene

My experience with this is why I have stayed active in the field and why I helped spearhead the formation of End of Life Choices California.  In the article, the physician said the referring physician “had not developed a response to requests for MAID and did not know if she would participate”.  We see this all the time here.  Part of our mission is to provide education to physicians and hospices in order to help eliminate this major barrier to end of life care.  We can help a physician wishing to learn more about MAID by putting him/her in touch with other physicians who are experienced and willing to offer guidance and support.

 

We also encourage all individuals who are thinking about their end of life care and wishes to have a conversation with their primary or specialist physicians NOW.  These conversations take time.  Many physicians are still grappling with how to deal with a MAID request. It is important to identify a physician who will support your end of life choices, whatever they may be, prior to a time you are actually ready to act on those important decisions. Discussions about Advance Care Planning with family and physicians are helpful in this regard. You can find guidance on our website here.

California is making great progress.  The 2019 California Department of Public Health’s annual data report on the use of California’s End of Life Option Act showed that 37% more physicians prescribed MAID than in the previous year.  That gives us hope that we will one day be out of a job.  But for now, we continue to help those who contact EOLCCA looking for support and information about end of life choices.

If you would like to support End of Life Choices California’s work, please make a donation.  We are very grateful for gifts of all sizes.  Thank you.

 

The Beauty of Choice

Introduction:  This beautiful piece was written by one of our Client Advocate Volunteers, Jill Lloyd, in southern California. We are honored to be able to share it with you. We continue to expand our volunteer base and if you are interested in becoming a volunteer, please let us know. And, if you or someone you know are suffering from a serious or terminal disease and wish to discuss all the end of life options, without judgement and with great compassion, please give us a call. We can help. – Judy

Choice is the most powerful tool we have.  It defines how we live but it can also define how we die if we are ever in the situation of facing a terminal illness.

Both of my parents chose to die on their own terms.  But this was many years before California’s End of Life Option Act became law (EOLOA).

And it was not so much about bypassing the suffering of a terminal illness, far from it actually, but about their personal faith.  They were both devout believers in Christian Science, a religion set on beliefs and practices belonging to the metaphysical family in which sickness is considered an illusion that can be corrected by prayer alone.

So even though neither of them was diagnosed since they did not go to the doctor, they faced their illness relying on prayer.

My mother died at age 35 of breast cancer.  I was 5 years old. I had little understanding of the circumstances other than my child’s perspective: religion was responsible for my mother’s early death.  But I also had anger toward her for choosing such a path.   

Years later my father became ill.  He was 67 and started to have symptoms of what appeared to be congestive heart failure.  I had become a hospice volunteer by then and having seen many people at the end of their life, though not a doctor, I was able to recognize the signs of someone nearing death. I fought with him to get treatment at least to alleviate some of his symptoms of pain and breathing difficulties, but he refused and basically said to me “This is my choice.”  I still had old anger regarding my mother’s death, and now it was compounded by my father’s choice to do nothing.  He recognized my concern and fear of him dying but wanted me to know “This is my choice. It doesn’t mean you should do the same if you were faced with a comparable situation, just that we all have to honor each other’s choices whether we agree with them or not.”  That can be tough to accept when witnessing the suffering of a loved one.

Prior to my father’s death my sister died at age 27 from malignant melanoma.   She chose the medical route and opted for any and all treatments available until the end, and even when there was no hope, doctors continued to “experiment “ with her.  She suffered quite a bit and died in a hospital.

I experienced several other deaths of loved ones, all of which had made different choices in their end of life care.  It was the unnecessary suffering that bothered me with several of the choices.  

My best friend Gayle of 50 years, who was the sounding board for me through all of my losses, knew my anger and disappointment at my mother’s choice, my father’s choice and my sister’s choice even though she kept fighting for her life.  My sister didn’t want to have the same experience as our mom, so she opted for medical treatment until the very end. Gayle and I talked about what we would do if we were faced with the same situations and followed the progress of the EOLOA as it went through the many stages and wondered if it would become law.  

Then Gayle was diagnosed with pancreatic cancer, the same week the EOLOA did become law in June 2016.  She saw that as a gift in some way as she realized quickly that there was no hope for her survival and felt the only bit of control over her life she had left was to choose how she wanted to die.   She expressed gratitude that the choice for Medical Aid in Dying was available to her as she felt it gave her the option to live fully until she was no longer able to, and then choose a peaceful transition.

She asked me to assist her in the process to complete the required steps to access the law.  She was with Kaiser already, and that made things go smoothly as they already had a patient advocate in place, doctors that would prescribe as well as serve as consulting physicians.  She also chose not to go on hospice care. Rather, she wanted to monitor her illness and select the best day to die based on the progress of her illness. She wanted to enjoy life as much as possible until her symptoms would start to impact her ability to do so as well as care for herself.

While I was supportive of whatever she wanted to do, I was heartbroken and would ask her to rethink it.  She never hesitated in her decision making and stuck to the desire to end her life on her terms. She found great comfort in that.

It was three months after her diagnosis that she started to feel many painful symptoms of the cancer’s progression and set the date within the week.

The morning of her death, which she asked me and another friend to attend, she got up and fed her animals, had a light breakfast and had a heartfelt conversation with us.  She expressed her gratitude for the friendship and for honoring her choice without judgment. She died peacefully and quickly, which preempted any long-term suffering.

I have reflected on my parents’ and sister’s deaths and how they wanted to live their final days.  All of them made different choices. All of them were living and dying on their terms, regardless if I agreed with their choices or understood them. And who knows if they would have chosen the same route as Gayle, had the law been in place back then.

But having been through this experience with Gayle, I came to have a better understanding and acceptance of these choices.

When I left Gayle’s house the day she died, I spoke with a friend of mine about what I had just experienced.  I was sad but also felt honored to have been in that sacred space and time with Gayle. And my friend said, “what you did was an act of love… pure and simple”.

When we love without condition, we honor people for who they are and the choices they make whether we agree with them or not.  It’s tough to watch our loved ones suffer. Only they can decide what is truly right for them, just as we want the freedom to choose what feels right for ourselves.

But that’s the beauty of it all.   We aren’t here to agree or understand other people’s choices; just to honor them as part of our unconditional love for them.

End of Life Choices California offers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visit www.endoflifechoicesca.org for more information or to speak with one of our volunteers, please call 760-636-8009.  All our services are free of charge.

Please contribute now to support our work. Thank you!