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!

Thank you Dr. Israel!

We applaud and need more doctors like New Jersey physician, Jessica Israel, MD to share the thoughtful journey that led them to participate in medical aid in dying (MAID) for their patients. In California and all the other states that have MAID, as well as in states that don’t yet have this legal option available but are working diligently to get similar laws passed, we need more Dr. Israels to be open about fully supporting the wishes of their dying patients.

It is our hope that the first ever National Clinicians Conference on Medical Aid in Dying, taking place on February 14-15 in Berkeley, CA, will provide guidance and support to those medical practitioners wishing to learn more about how to help their dying patients achieve a ”good death”. 

EOLCCA has made great progress in learning about and communicating with physicians in private practice  – and with hospices – in California who support MAID. These medical providers have been prescribing medical aid in dying and are accepting our client referrals for help finding a physician who will prescribe MAID.  We hope that following the conference, many more physicians and hospices will partner with us and our clients to adequately explore all their end-of-life options.  

Click below to read Dr. Israel’s story.

 A day like no other: The first time I helped one of my patients die  

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End of Life Choices California offers information and personal support to anyone seeking help facing end-of-life decisions through our statewide volunteer and education programs. You can read about all our services here on our website.

The Path to a Good Death

This weekend, EOLCCA hosted our third Client Advocate Volunteer training in California.  It was a great day and we have some amazing new volunteers in our EOLCCA family.  Part of the training included sharing (anonymously) client stories with the trainees, and what attending a death looked like and felt like. It is always awe-inspiring for me to revisit those experiences.  

Over the ten years that I have been working with the dying, I have attended many planned deaths and each one is different.  Each person’s path to that good death is unique. Factors such as how family members feel, how the client feels about dying, cultural and religious norms, support by their medical team all come into play that day; one very important day for the client. 

It’s interesting to me that the path to a good death is a path we can plan for with our loved ones, choose for, hope for or be fearful of, though when we get to that final last step of dying, we do it alone.  All of us will die some day as it is part of the human condition. All of us will take that last step into death, and very few people have been able to take it and return, to tell us what it is like. It is an emotional, spiritual and physical journey.

We, at EOLCCA, have been honored to be present at many of these planned deaths.  

Just to mention a few: one woman died gazing out her floor-to-ceiling  windows at the forest, with her young granddaughter lying next to her holding her hand; one woman who spent her childhood in Hawaii died in a temporary living situation with her sister and me by her side, holding her hands, playing Hawaiian music and singing to her; one gentleman chose to die in a hotel room overlooking the ocean with his wife and friends there, after having a last drink of his favorite bourbon and having the opportunity to say goodbye; one woman died surrounded by her three adult children telling funny stories of their childhood, rubbing her feet and reassuring her that all would be well.  And then there was the family who lived far away from any of us or our volunteers, and we were only able to support them by phone. They were frightened of being the ones to prepare the medication for their father, who was very sure he was ready to die and whose physician had agreed and provided the lethal prescription for him. We were able to provide information and personal support to those grown children who found the courage to do this loving thing for their dad by providing him with his final wish for a peaceful death. They were so grateful for our support.

These are but a few of the amazing people and families who have crossed our path.  It is such an honor when their path of choosing a planned death with medical aid in dying crosses our path of being able to provide information and personal support, free of charge and with no agenda, to anyone who needs our help. I am continually struck by what a gift this is for them, and for us.  

As we continue to grow and train volunteers and meet the needs of more clients, we realize as an organization that we need help and cannot do it alone.  We know there is great need in the world for help for all kinds of situations and organizations, and we also know there is an important election happening this year.  However, if you have a few dollars to spare, and wish to support us in our work, we would be grateful to receive them so we can continue. And so that we can be there for you and your family when it is your time to walk that path and take that final step.

 

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 to answer a variety of questions.  To speak with one of our volunteers, please call 760-636-8009.  All our services are free of charge.

If you would like to support the mission of End of Life Choices California,
please click below and learn more about our funding needs.
Thank you!

EOLCCA 2020 Hope and Vision

We have been thinking about how we want to grow in 2020 and are working to clarify our vision for the coming year. But, sometimes it helps to look back to where we have been and where we are now in order to look ahead. In doing so, we surprised even ourselves by how much EOLCCA has accomplished since its inception in February 2019. We wanted to share that with you: our friends, clients, and supporters. It has been a whirlwind year.

In ten short months, we have accomplished a LOT.  As an all-volunteer organization run pro-bono by the founders, we have already achieved several exciting milestones.  We started on a shoestring budget and to date have successfully raised $45,000 with the help of a major gift of $10,000, as well as donations from other kind and generous people who believe in our mission.

Those initial dollars enabled us to begin building critical infrastructure.  We,

  • obtained our official IRS 501(c)(3) nonprofit designation
  • created and are maintaining a welcoming, resource-rich website 
  • purchased essential data management software, insurance, and phone line
  • marketed our services and created a social media presence with Facebook postings, modest promotions and regular blog posts on the website 
  • developed curriculum for and hosted two volunteer training sessions (Los Angeles and San Francisco) to start building a strong and committed core of Client Advocate Volunteers.

Since we launched our website in May, we have become a virtual clearinghouse on Medical Aid in Dying (MAID) in California.  The initial ramp-up phase has manifested a steadily growing stream of phone calls and email requests for information from the general public as well as health care professionals.

To date, 38 individuals and their families throughout the state became our clients seeking MAID, 12 have died at the time and place of their choosing using a MAID prescription, and several other clients are in the process of concluding the 15-day waiting period and planning to ingest.  We have been honored to be a supportive presence at the majority of these planned deaths.  

Our volunteers have also given 28 community-based presentations, participated in a groundbreaking End of Life Symposium organized by LA’s City of Hope Cancer Center in Duarte CA, and provided seven in-services for hospices and their physicians in the San Diego, Los Angeles and San Francisco Bay areas.  We have discovered ten more physicians who are willing and have prescribed MAID whom we can now connect to clients who are having trouble finding a participating physician. We have also published 27 blogs and thought pieces and garnered more than 250 followers. And, the list continues to grow.   

Whew!  All that said, our vision for 2020 remains steadfastly the same. It is our intention to continue providing all programs and services on a volunteer basis and at no charge so they are accessible to anyone who wants or needs them. Our hope is that this year we will gain the ability to hire a Program Coordinator to support to our Client Advocate Volunteer program and our Management Team. This will ensure we can keep things running smoothly as we continue to grow.    

We hope you can continue to support us with good thoughts, cheering from the sidelines, and financial support if you are able.  This will enable us to launch our next phase of growth so that EOLCCA can reach out to and educate more Californians about all legal end of life options including the California End of Life Option Act.

All the best to you and yours for a peaceful and deeply satisfying 2020.

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 to answer a variety of questions.  To speak with one of our volunteers, please call 760-636-8009.  All our services are free of charge.

If you would like to support the mission of End of Life Choices California,
please click below and learn more about our funding needs.
Thank you!

Giving Thanks

The dictionary describes the word ‘thanksgiving’ as follows:

“the act of giving thanks; grateful acknowledgment of  

benefits or favors…..an expression of thanks….”

Each of us always looks forward to Thanksgiving, and loves spending hours with family gathered around the dinner table.  We also try to find time to sit quietly and think about all the things important to us for which we are grateful.  We try to do this on a regular basis anyway, but find Thanksgiving to be an especially poignant time to do this again.

We want to share with you a story that makes us especially grateful for the End of Life Option Act and for all those who played a role in making medical aid in dying a reality here in California.

Recently, as a Client Advocate Volunteer for End of Life Choices California (EOLCCA), Judy was invited to be present at the death of one of our clients. She was a woman in her early 50’s with end-stage ovarian cancer – whom we will call Sharon to protect her identity. Sharon lived with her illness for almost five years. But it took a turn for the worse this summer, metastasized rapidly and could no longer be remediated.  She knew she was dying and her pain had become unbearable.  She chose to access life-ending medication through the End of Life Option Act in California so that she could control the time and place of her death, and die peacefully with her loved ones around her.

Here, at End of Life Choices California,

We are thankful for the thousands of donors and activists who lobbied so passionately, the compassionate California legislators who proposed and ultimately passed, and Governor Jerry Brown who signed the California End of Life Option Act into law.

We are thankful that Sharon’s compassionate oncologist and physicians understood her situation and were willing to prescribe life-ending medication that she could have available should her suffering become unbearable.

We are thankfulthat Sharon’s family was able to contact EOLCCA and ask us to help them navigate the process and be present if she ultimately decided to ingest the medication.

We are thankful to our donors that EOLCCA could provide a knowledgeable volunteer to be there to support Sharon and her family.

The day she chose to ingest the medication, Sharon was in her own bed, surrounded by her three grown children, her sister, and her sweetheart. They sang to her, prayed with her, told her they loved her.  After she had taken the medication and fell into a deep sleep with her service dog faithfully by her side, she died peacefully as her family continued to sing to her and tell her how much they loved her.

We are thankful that Sharon and her family were afforded this serene and humane opportunity to say their goodbyes. What a gift for her and for them.

We are thankful every day for the financial support from EOLCCA’s donors that enables us to provide support and reassurance to people like Sharon and her family during such a vulnerable time.

To continue our vital work, and help others like Sharon and her family,
we are counting on your generous support.

GivingTuesday is taking place just after Thanksgiving on December 3.  We hope you will ensure that EOLCCA volunteers can help others like Sharon by making a donation to support our work here on that special day.  Thank you!

Best wishes for a Thanksgiving holiday filled with all the people and things for which you give thanks.

With gratitude,

Judy, Karen, Claudia & Lynne

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

If you would like to support the mission of
End of Life Choices California,
please click below and learn more about
our funding needs.   
Thank you!

Going online shopping this weekend?

A New and SUPER Easy Way to Contribute to our Important Work! 

Hello Friends,

We know how many requests for financial support come through your inbox for nonprofits and political causes; especially with the upcoming elections.

As a small nonprofit dedicated to improving how people die in California we  also count on your financial contributions to help us stay afloat.

While we will always appreciate and accept any donation you make to us: year-end, or otherwise, we’d like to share another way you can make small contributions EVERY TIME YOU PURCHASE SOMETHING ON AMAZON!  And doesn’t everyone use Amazon at least once in a while?

It’s very easy. Just follow this link to AmazonSmile and underneath the browser window you’ll see it says “supporting”.  You simply search for End of Life Choices California, and click save to make us your charity.

The trick is, be sure that every time you shop at Amazon, you go through this link in order for us to receive the donation of 0.5% of the amount of your purchase.  Only purchases made via smile.amazon.com, (not www.amazon.com or the mobile app) generate AmazonSmile donations.

We hope you’ll find it in your heart and in your wallet to help us in this small way from now on.  We appreciate every dollar generated.   Thank you!

If you would like to support the mission of End of Life Choices California,
please click below and learn more about our funding needs.
Thank you!