Looking for answers about the use of MAiD

Adrian wanted some answers

Byram, a neuroscientist and medical ethicist – and member of the EOLCCA Board of Directors – is not one to leave a complicated question unsolved. And this one defied understanding. Whether it was his data-driven mindset, his Canadian/American dual citizenship or his fierce commitment to personal autonomy, Byram saw the need to dig deep for the real facts.

The question? How could two very similar groups – the people of California and the people of Canada – differ so radically in their use of Medical Aid in Dying?

Adrian Byram

From Canada to California

Raised in Ottawa and Toronto, Canada, Byram attended grad school at Stanford then remained in California as an entrepreneur and executive in the IT industry. After retiring in 2012, he earned a PhD in neuroscience and medical ethics from the University of British Columbia. His thesis dealt with the issue of decision-making by surrogates for ICU patients – this being only the first medical/ethical question he would thoroughly address.

In these years, Byram also developed a deep interest in end-of-life choice. Though his father and father-in-law had both died young, his mother and mother-in-law lived into their 90s. “My mother-in-law had been very specific (that she wanted to avoid prolonged suffering) but then she did not have a choice. At the end she had palliative sedation; my wife and her sister were at least able to urge that she be given more morphine to limit her suffering.”

But those decisions, whether made by family or by physicians, are never easy, Byram explains.

I should have the choice

“My thesis had an entire chapter on the evolution of bioethics from its inception in the 1970s to today,” he says. “Bioethics has four principles : Respect for the patient’s autonomy; Do no harm; Try to be good; and Justice – which is very complicated.” Respect for autonomy, Byram says, is paramount to him in situations involving end-of-life decision-making: “I should have the choice of what happens to me.” It’s at the heart of his most recent study.

Study highlights lack of information

Don’t Californians want that choice about how their lives end? Byram couldn’t believe that’s not so. Californians (Byram and his wife have lived in the San Francisco Bay area for 40 years) are similar to Canadians in many ways, why would this be different?

Here’s what he and Reiner found:

(1) Only 25% of Californians know MAID is even available, let alone that it is their legal right, while 67% of Canadians know MAID is their legal right.  And,

2) All Canadian healthcare institutions let everyone know MAID is available, along with all the other services they offer. In California, healthcare institutions commonly use their websites to list their many treatment and wellness services, but (with the exception of Kaiser Permanente) mention MAID, if at all, on hard-to-find pages. 

Narrowing the gap

We can narrow that gap, and improve the life and death of Californians.

How? Every supporter of end-of-life choice is invited to spread the word and circulate the link (here) to the summary of the study to your friends and on your social media channels. You can also request a speaker to address your community group and–if you’re so inclined–to volunteer with us! We always appreciate donations to help us do the work we do–at no charge at all to our clients and their families.

And, most importantly, know that MAiD is available to you. You may never need it, but you have the right to understand it and choose it if the time comes.

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A lifelong newspaper and magazine writer, EOLCCA Board Member Fran Moreland Johns has published fiction, nonfiction, and several books. Her focus on end-of-life issues includes many volunteer years, numerous articles and one book, Dying Unafraid. She holds a BA in Art from Randolph-Macon Woman’s College, and currently blogs at Medium.com and franjohns.net. Her short story collection, Marshallville Stories, was released in April 2022.

EOLCCA supports a strong team of experienced volunteers throughout the state, ready to help families with information and support to navigate their end-of-life planning and choices. That includes obtaining aid in dying through the California End of Life Option Act, helping them obtain needed services or adequate pain control, and finding physicians and hospices for them who are willing to prescribe MAiD.  EOLCCA is a nonprofit organization and we rely on volunteers, as well as donations from individuals and foundations, to advance our work. To get involved, please visit ways to help.  Thank you!

Point Loma Nazarene University

Lynne Calkins BA, CRNP, founding member of End of Life Choices California (EOLCCA), and Donald Moore, MD of Eumoria Health, a palliative care physician will co-present this special session to students halfway through their clinical rotations in the Physician Assistant Program at Point Loma Nazarene University. They will discuss all end of life options including medical aid in dying with a special focus on palliative care. Dr. Moore will speak about the role of palliative medicine in healthcare and specifically about medical aid in dying as a legal, moral option for those who are eligible and request it. Other topics will include eligibility, changes to the law, and current trends in Medical Aid in Dying (MAiD) including the expanded roles for PAs and Nurse Practitioners (NP) in some states.

Please note that this presentation is limited to students in the Physician Assistant (PA) Program and is not open to the public.

Questions: Please contact us at: speaker@endoflifechoicesca.org

New Study Shows Only a Quarter of Californians Are Aware of Medical Aid in Dying Rights

End of Life Choices California Board Director Adrian Byram co-authors study evaluating disparities in public awareness and institutional support from healthcare systems

Dear EOLCCA Blog Readers,

We are pleased to share with you today’s press release about an important new study co-authored by one of our esteemed board members, Adrian Byram. This study confirms our experience that terminally-ill Californians are woefully uninformed about our state’s compassionate medical aid in dying law.  They – and their loved ones – are needlessly suffering as a result.  Please help us expand pubic awareness by supporting our outreach and education work with a donation today. Please contact our Speakers Bureau if you would like to host a presentation for your community group, hospice, church or synagogue, retirement community or local library, or take the next step and become more involved as a volunteer.  Thank you!

Californians nearly 16 times less likely than Canadians to choose Medical Aid in Dying

SAN DIEGO, CA, April 23, 2024 End of Life Choices California (EOLCCA) today announced a new study co-authored by EOLCCA Board Director Adrian Byram, illuminating the gap in public awareness and institutional support from healthcare systems in California. Byram and his colleague Peter Reiner, a professor in the Psychiatry Department at the University of British Columbia, found only 25% of Californians are aware of their options for MAiD as compared to 67% of Canadians who are aware of their legal right to MAiD. 

MAiD has been legalized in over 10 countries, 10 U.S. states and the District of Columbia; yet, medically assisted deaths vary significantly by region. While typically challenging to understand the differences in medically aided deaths between countries, California and Canada have similar populations and both introduced MAiD in 2016. They also both have government-provided Medicare for adults age 65 and older and a healthcare system staffed primarily by independent physicians free to choose their patients and the medical services they provide. However, Californians are nearly 16 times less likely than Canadians to choose MAiD.

Insights from the research illustrate that California and Canada are nearly identical in the following areas:

  • Moral acceptability of MAID: 70% of Californians and 65% of Canadians believe MAiD is morally acceptable, regardless of whether it is self-administered in California or physician-administered in Canada.
  • Willingness to use MAiD: Approximately 47% of both Californians and Canadians indicated they would “definitely” or “probably” utilize MAiD to avoid suffering from a long and painful disease like cancer.
  • Availability of palliative and hospice care: Inability to get palliative care doesn’t indicate a higher likelihood to choose MAiD. In 2023, more Canadians (58%) than Californians (42%) had palliative or hospice care at their time of death.
  • Reason for choosing MAiD: Approximately two-thirds of Canadians and Californians who choose MAiD have been diagnosed with cancer. The remaining had similarly intractable diseases, such as ALS or COPD.
  • Restrictiveness of respective laws: With the exception of allowing medical practitioners to provide MAiD by injection, Canadian law is notably more restrictive with more guardrails and requiring a medical practitioner to obtain the patient’s consent a final time immediately before administering MAiD.

“We observed Californians choose MAiD far less frequently than Canadians, even though the two jurisdictions are similar in many ways. This enabled us to ask why in a scientifically valid manner,” said Byram. “Our findings clearly show two major differences between California and Canada. First, 75% of Californians are simply unaware they have a legal right to MAiD. Second, unlike in Canada where all healthcare institutions let patients know MAiD is available, listing it on their websites alongside all their other medical services, in California almost no healthcare institutions mention MAiD on their websites, or only if the patient is able to make a diligent search. I hope this research increases Californians’ awareness of one of their fundamental legal rights.”

“Nearly a decade after MAiD was first introduced with the California End of Life Act, it’s disappointing to see that only a quarter of Californians are aware of their fundamental legal rights,” said EOLCCA Board President Robert V. Brody, M.D. “Through our compassionate end-of-life support services, we frequently find that residents don’t have the information needed to navigate their options. EOLCCA is committed to helping all Californians explore their options and approach the end of their lives with dignity, autonomy and peace.” 

Methodology

A demographically representative and statistically sound group of more than 500 adults aged 60 and older in California and Canada were surveyed about their attitudes and intentions related to MAiD. The full results of the study have been published in the peer-reviewed scientific journal Mortality

About End of Life Choices California

End of Life Choices California (EOLCCA) provides all Californians with the necessary information to effectively navigate their rightful end-of-life options and provide the support required to honor their choices. The organization offers trained client volunteers to work with Californians who are seriously or terminally ill, as well as individuals thinking ahead and planning for the future. Through compassionate end-of-life support, EOLCCA empowers individuals and families with the knowledge needed during one of life’s most challenging transitions. For more information, please visit endoflifechoicesca.org.

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Leisure World Senior Living Community at Seal Beach, CA

Peace Club presentation on: The Value of Advance Care Planning and an Overview of End-of-Life Options

Linda Rowe, volunteer with End of Life Choices California, will outline the value of Advance Care Planning, a process that enables individuals to make plans about their future health care choices and is applicable to adults at all stages of life.  

A review of the legal end-of-life options in California will include discontinuing or declining medical treatments, hospice and palliative care, and voluntarily stopping eating and drinking (VSED).  Additional detail will be provided about California’s End of Life Option Act in effect since 2016, a law that is also referred to as Medical Aid in Dying (MAiD) or Death with Dignity. There will be ample time for questions and discussion at the end of the presentation.

Private: Residents of Leisure World Senior Living Community

Dixon Senior Center: California End of Life Option Act

This event is Open to the Public

The presentation will cover the value of Advance Care Planning and related documents as well as highlight the End of Life Options Act (2016), also known as Medical Aid in Dying (MAiD). The background, overview, and specifics of this law such as who is eligible, the process for obtaining the prescription from the patient’s physician, and ingestion guidelines will be outlined.

Presenter: Carolyn Smith, Volunteer End of Life Choices California (EOLCCA), will introduce our organization and the free services of personal support and education provided through a dedicated team of volunteers.

 Questions: Contact, Speaker@endoflifechoicesca.org


End of Life Choices CaliforniaEnd of Life Choices California’s mission is to provide Californians the information and support to successfully navigate their legal end-of-life options.  Relevant topics include Advance Care Planning; the California End of Life Option Act (EOLA)eligibility requirements for Medical Aid in Dying (MAiD); and Voluntary Stopping Eating and Drinking (VSED)–a legal option in all 50 states. Our volunteers are very knowledgeable about both hospice and palliative care and can explain the differences between the two services.

Be sure to check our Resources page for Q/A; information on books, films, and organizations; sign up for our blog; see upcoming events; and so much more.  To request a speaker for your group or organization, click here.