A Volunteer’s Story

Our client, and my friend, “Anne” died Friday, December 10. She was the mother of my best friend and the most fun-loving, bubbly, vivacious, down-to-earth woman I have ever known. I called her my “other mother.” At a cool 95, she was having a great time. She was my hero.

 

But then came the cancer and her life changed. Now everyday was a painful struggle. Her body just didn’t seem to work right anymore. After she returned home from a horrific trip to the ER, followed by a hospital stay and rehab, she said, “I’m not going back there,” and asked me about that “aid in dying thing”.

 

Even with hospice support, her daily life soon became a grind of pain and difficulty and loss of things that brought her pleasure. After going through the process with her medical providers to request aid in dying medication, and once she received the prescription, she seemed to relax and rally and had a pretty good week. But ultimately, the pain and misery became unbearable and, on that Friday, with her daughter, her boyfriend and me present, she drank her final medication and peacefully drifted off to a deep sleep with hugs all around. I’m grateful to EOLCCA for providing the training that made it possible for me to support my dying friend’s wishes.

 

— C.A.

Dear Friends and Supporters,

As the new year approaches, we thank you for your generous support, your insights, and your commitment to our work throughout 2021. You have helped EOLCCA grow in a sustainable and incremental way.  We are truly grateful to be able to meet the needs of Californians, such as Anne whose story is shared above, seeking answers or support with their end-of-life options.  We look forward to continuing this vital work in 2022.

The New Law

On January 1, 2022 — just a few days away — California Senate Bill 380 which became law this fall, will go into effect!

We welcome all of SB 380’s excellent improvements!  Through this blog and our website, we will keep you apprised as the law becomes operational and we learn more about how providers, healthcare systems and hospices address required changes in the new year.

Here’s a snapshot:

  • The new law reduces the waiting period between the two required oral requests from 15 days to 48 hours.
  • Healthcare systems and hospices will now have to post their aid-in-dying policies on their websites.
  • The Final Attestation form will be completely eliminated.
  • If a terminally ill patient requests medical aid in dying and his or her physician does not wish to participate, the physician will be required to tell the patient he or she will not participate. AND the physician must document the request in the patient’s medical record and transfer the patient’s medical records upon request.
  • The new law clarifies that medical aid in dying medication can be taken within a healthcare facility.

Grateful

We continue to be honored to help people in circumstances, such as Anne’s, to navigate the process through the end of their lives and hopefully find their way to a peaceful death.

We are grateful to be able to provide these services at no charge to our clients.  It is because of the big-heartedness of you, our supporters that we can continue to do so. Thank you. If you wish to make a year-end gift to further our work, please click here for our donation page and accept our sincere appreciation.

Happy New Year to you all!  And best wishes for a more peaceful, healthy 2022.

Sincerely,
The EOLCCA Team

California End of Life Option Act 2019

The recently released 2019 data report on the California End of Life Option Act highlights, among other things, the welcome progress made in the increasing number of physicians prescribing medical aid in dying.

Dear Readers,

In 2019, 246 unique physicians wrote MAID prescriptions, up from 180 in 2018, an increase of 37% from the year before.  This matches the 37% increase in the number of prescriptions (618) written in 2019, up from 452 written in 2018.

This is trending in the right direction.

stethescope

More needs to be done

From our experience over the past 12 months, fully one third of all calls we receive pertain to seeking help finding a physician who participates in the California law.  While the 2019 year data is encouraging, the report also indicates that there is more work to be done to ensure that all individuals facing a terminal illness are both informed about and have access to medical aid in dying.  The report reflects a disappointing lack of diversity among the people who received prescriptions for medical aid in dying and used MAID last year in this culturally rich and very diverse state.

Specifically, according to the report, 353 White Californians (87%) utilized the law in 2019, while comprising just over a third (36.5 %) of the total population of California. Alternatively, 5 Black (1.2%), 26 Asian (6.4%), and 16 (4.0%) Hispanic Californians accessed the law in 2019, not even closely matching their demographic representation of the state’s population (Black: 6.5%; Asian: 15.5%; Hispanic: 39.4%).

CA DPH logo

As attention throughout the country has become laser-focused on racial justice, it is past time to remedy this specific disparity in access to medical aid in dying under the California End of Life Option Act.

Out in the Community

While we have continued to provide in-service training sessions for hospice personnel through video conferencing during the stay-at-home restrictions and continue to work with clients extensively by phone, once the threat of COVID-19 is finally mitigated, our EOLCCA volunteers look forward to getting back out in the community.  We will direct our outreach efforts to broaden end-of-life planning education to reach a more diverse community of terminally-ill Californians.

We want to ensure that every person is aware, early enough in their terminal diagnosis, that in addition to accessing hospice care, he/she may qualify for California’s End of Life Option Act and if so, has the right to request a physician’s prescription for medical aid in dying.  If they would like an EOLCCA volunteer to help them navigate the often cumbersome and lengthy process involved in accessing MAID, including finding physicians who participate, as always, we will be there to support each person and their family members for as long as they would like our help.

Looking for answers about EOL? We can help.

I hope that everyone in California who has ALS or any terminal illness and wants to exercise their right to die on their own terms is lucky enough to give them (End of Life Choices California) a call.

The Right to Access MAID

Dear Readers,

This blog is devoted to Andy’s story and to his father who is terminally ill with ALS.  By discussing his loving but harrowing journey to honor his father’s end of life wishes, Andy, via social media, has generously opened the door wider to other terminally-ill individuals and their families seeking access to Medical Aid in Dying in California.  We at EOLCCA know that many people throughout the state experience similar barriers and do not know where to turn for help.  This story reinforces the very reasons we founded End of Life Choices California and we thank Andy for helping to spread the word about what we do, and how our volunteers can help. Please help to share this information to your networks too!  Thank you.

Andy’s original Reddit post begins below:

Photo by Hush Naidoo on Unsplash

How to get medical aid in dying (MAID)
in California with ALS

Support Advice via Reddit

Hi everyone. I’m writing this post for two reasons:

First and foremost, thank you. I want to thank this community and I can’t express that sufficiently. I came down to California to help my dad who has advanced stage ALS. He asked for my help in some “traditional” suicide methods because he felt like he was running out of options. It broke my heart, and at the same time, I was so glad that he had the courage to reach out for help.

I did some research and discovered that in the state of California, he has the right to Medical Aid in Dying (MAID) and that I would come and help him pursue that option. I advocated for this course of action because it is simple, peaceful, and he can do it whenever he is ready via his feeding tube without being stressed about his closing window of physical ability to do it “some other way.”

I went to California and spent about a month with him, I committed to staying until he had his prescription. I read the full legislative act multiple times and we started to contact his doctors.

Here’s the full text from the legislature (actually a short read).

I advised him to keep his request short and direct, and to tell his doctors that he “wanted to exercise his right as a resident of California to request and receive Medical Aid in Dying due to his terminal condition.” We did the phone calls, and emails, he has several doctors at this stage in his illness.

His own Primary Care physician refused to be the “attending physician” – this is the doctor who actually writes the prescription. He claimed he “couldn’t due to his insurance.” I knew this was not likely to be true, but in the end I got him to agree to be the “consulting physician” if I got another physician to be the attending. Progress.

His neurology team at a local hospital curtly replied to his email and then ghosted us. I had no idea what to do. Then I thought of Reddit.

The ALS Reddit group gave me everything I needed to succeed, and I just wanted to reiterate some of the best advice I got in my original request for help, and some more information.

My original thread on reddit is available here.

There were two helpful links shared, but by far my savior in this endeavor was an organization called “End of Life Choices California.”

They took my initial call, and then assigned a really wonderful volunteer to my case. They wrote documents for me advising me what language to use with our doctors, and ultimately put us in touch with physicians who were willing to be the attending physician. This was key.

My volunteer then called me every couple of days, not just for logistical advice, but to check in on me and how I was doing, and brought up topics that hadn’t even occurred to me about how I might spend my remaining time with my dad. She did a perfect job for me, and after a few weeks, we got my dad his prescription. The feeling of relief was palpable, for everyone involved, especially my dad.

The second reason I’m writing this post: I told End of Life Choices that I learned about them on Reddit and they wanted me to pass this message along:

We would appreciate it very much if you want to tell the Reddit readers that you worked with a very helpful volunteer with End of Life Choices California.

Our website: www.endoflifechoicesca.org

Our phone number: 760.636.8009

This was a stressful and bureaucratic process. End of Life Choices helped me so much. I hope that everyone in California who has ALS or any terminal illness and wants to exercise their right to die on their own terms is lucky enough to give them a call.

Again, thank you all 🙂

Advance Care Planning and the Role of Hospice

“The peace of mind that results from that rich conversation improves the mental and social well-being of patients and reassures them that their family won’t experience the suffering of not knowing what they would have wanted if they became unable to participate in their own decision-making.”

Stephanie Anderson, M.D., executive director of Respecting Choices

Dear Readers,

We are pleased to share new research by the Coalition to Transform Advanced Care (C-TAC)  described in the latest issue of Hospice News which very clearly underscores the value of Advance Health Care Planning.  “This report identifies several key practices that can be used to promote advance care planning across the country and ensure that people receive the care they want in the setting that is right for them,” said C-TAC Executive Director Jon Broyles.  (Read the full C-TAC report here on their website.)

Supporting and educating people about Advance Care Planning is also the foundation of End of Life Choices California’s (EOLCCA) work as a clearinghouse for information on all end of life (EOL) options, including medical aid in dying here in California.  We know and appreciate that hospices are on the front line of EOL care for the terminally ill.  That is why EOLCCA volunteer trainers focus on reaching out to and providing specialized education programs for hospice staff throughout California.  

Advice for Future Corpses
In-Service Training

During an EOLCCA hospice in-service, we discuss all legal end of life options and the critical role Advance Care Planning plays in the quality of a patient’s end of life care.

Our in-services contribute to a hospice’s more informed approach and a greater sensitivity to the end of life choices their patients wish to make. We are especially pleased to see some hospices now encouraging their patients to move forward in their advance care planning.  Since EOLCCA’s inception, our trainers have provided 17 hospice in-services.

In light of Covid-19, we have adapted these trainings to a successful video conference format, making it possible to offer them throughout the state, from Crescent City in the north to El Centro in the south. We have observed a more proactive response from hospice staff we have trained in interactions with their patients, and we continue to be a resource to all those trained.  A silver lining of this terrible Covid pandemic, is that we can offer this distanced learning to all.

Please let your own hospice, medical, and caregiver networks know that EOLCCA is available to provide similar virtual training sessions, at no charge, about ACP and all end of life options. To request a presentation please call 760-636-8009 or complete this form on our website.  Thank you.

COVID-19 and MAID

This KQED (San Francisco) story by April Dembosky offers a wealth of
accurate information for anyone thinking about using the California
End of Life Option Act (EOLOA) to access MedicalA id In Dying (MAID). 

The story is a concise discussion for those terminally-ill Californians who would qualify for the law right now, irrespective of the current pandemic.

And finally, for those seeking a physician willing to prescribe aid in dying medication, this piece tells us there is a growing number of doctors in California available for this end-of-life choice.

You can read or listen to the story here.

 

a child's delightful oil painting of a clown with a blue hat and a red ball on top.

Dr. Lonny Shavelson  (Beth LaBerge/KQED)

Note to our Readers:

EOLCCA volunteers are continuing to respond to terminally-ill individuals and their families who call us for information and personal support around their end of life options. This pandemic continues to change so much in all our lives.  But those who call EOLCCA are suffering from cancers, neurodegenerative diseases, COPD, heart failure, etc. with a 6 month life expectancy, or less.  And they are looking for compassionate physicians who will prescribe aid in dying medication, like Dr. Shavelson.  Fortunately, there is a growing number of like-minded, empathic physicians throughout the state.  Have you had this discussion with your doctor?

Please call  760-636-8009 to speak to an EOLCCA volunteer or email info@endoflifechoicesca.org. We are here to help.