Kathie Jackson (Hospice by the Sea) & Lynne Calkins (End of Life Choices California)
Topic: What is Assisted Dying?
Kathie and Lynne will share with us what “assisted dying” means in the state of California, along with recent policy updates. They will also be sharing details of how “Assisted Dying” works in various settings, as well as the requirements set forth in the California End of Life Option Act.
For additional information please contact: SBSP Co-Chairs Jean Vaccaro 619-253-4095 or Jeremy Willis 858-775-3466
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.
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.
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%).
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.
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
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:
How to get medical aid in dying (MAID) in California with ALS
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.
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.
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.
A recent story about the firing of Dr. Barbara Morris, a courageous geriatric physician in Colorado who went to court to fight for the right of her patient to use the state’s medical aid-in-dying law, is yet another warning for those of us in California and other states who are working hard to lift the barriers to compassionate and timely access to medical aid in dying (MAID) for the terminally ill.
This latest incident, involving a physician who independently chose to prescribe medical aid-in-dying for her patient and as a result was fired from her job with a jointly run Catholic/Seventh-day Adventist hospital system opposed to MAID, is as unfortunate as what recently occurred in New Jersey where a single Orthodox Jewish physician had the power to temporarily stop the law from going into effect because of his personal faith-based beliefs.
We have no wish to comment on religious preferences or practices, however, we believe that such barriers to health care do not belong in a democratic and compassionate society such as ours. New Jersey Assemblyman John Burzichelli, one of the law’s sponsors, speaks directly to our concern when he says: “I have my beliefs, you have your beliefs, but don’t use the machinery of government to impose them on others.”
Enough barriers are already built into the system.
The physical and emotional barriers most terminally ill individuals face in accessing medical-aid in-dying in California and other states that have adopted a law are already burdensome enough: family members opposed due to their own beliefs; physicians who have often been treating the patient for years and refuse to prescribe based on their own beliefs; hospices, social workers and health care providers opposed to MAID that won’t even inform a patient of their right to request the medication nor give the patient a referral to a health care provider who is willing to prescribe as stipulated in the law. Moreover, the process to request MAID in California is lengthy and daunting, including a wait time of a minimum 15 days, which every individual, sick and debilitated as he/she is, must go through who wishes to ease their end-stage suffering with medical aid-in-dying. Oregon just wisely corrected this stipulation and those who are very near death can now access the law in a shorter period of time.
Are you a compassionate physician?
End of Life Choices California was founded on a belief system and mission: to enable those who face end of life situations to have access to ALL the information available and a support-system to make informed decisions about how they wish to die, including the option of medical aid-in-dying.
We continue to search for more physicians throughout California to whom terminally-ill individuals can turn for compassionate care, understanding, and support of whatever end of life option they choose, including medical aid-in-dying if they qualify under the law.
If you are one of those compassionate physicians or a medical provider of any kind, we would love to know about you so that as we get calls and emails from people who need help accessing the California End of Life Option Act we can reach out to you and see if our client would be an appropriate referral. In addition, if any of you, our readers, have had a positive experience with a doctor or hospice about end-of-life choice, and would like to share your story with us, we would be very grateful to hear from you. Ways to contact EOLCCA. Thank you!