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!

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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Dementia and End-of-Life Choices

 

“What about a person with dementia?”

At the dozens of presentations we conduct across the state, no matter where, no matter who the audience is, inevitably, this is nearly always the first (or second) question we are asked.  And of the hundreds of phone calls and email inquiries we receive each year, approximately 15% of these regard helping a family member or loved one with dementia.

What is dementia and how does it affect end-of-life options? 

Dementia is often used interchangeably with Alzheimer’s, but it is actually a general term for loss of memory, language, problem-solving, and other thinking abilities that become severe enough to interfere with daily life.

Alzheimer’s constitutes 60-80% of dementia cases, but many other conditions can cause dementia, such as Huntington’s or Parkinson’s diseases (neurodegenerative diseases), AIDS, Lyme disease, and/or stroke.

Often, says Founding Director and Client Volunteer Lynne Calkins, we will be talking with someone who is searching for a physician who prescribes Medical Aid in Dying (MAiD) to eligible patients, and then, as the conversation proceeds, “We learn there’s dementia involved and have to tell the person, ‘I’m sorry, but I don’t think your mother’s going to be eligible under the guidelines of the California End of Life Option Act.’”

Mother with dementia and daughter

To qualify for MAiD in California, a person must have a terminal illness that is expected to result in death within six months and have the capacity to make medical decisions. The challenge, says Calkins, is “by the time you have six months left with dementia, you’re not of sound mind.”

What, then, are your options?

I. Dementia Directive

First, she suggests completing a Dementia Directive. This form lets you communicate what you would want at each stage of advancing cognitive decline. It is not legally binding at this time, but can be attached to your Advance Directive.

II. Physician Orders for Life-Sustaining Treatment (POLST)

Those who are clear they don’t want to go all the way to the end with dementia often have a strong family history of dementia, in Calkins’ experience, and/or have had the experience of taking care of somebody for 10, 15 years through dementia. “They know where this is going” and that they don’t want that ending for themselves.

Completing a POLST with your physician can help in this regard. You can add, “‘If I get an infection, I don’t want it treated. I want to be in hospice and receive comfort care only.’  You can then be kept comfortable and die of pneumonia or some other infection.”

III. Voluntarily Stopping Eating and Drinking (VSED)

VSED is the conscious act of a person to intentionally stop eating and drinking with the goal of ending his or her life. The decision to use VSED relies on a competent person’s preference and determination to control his or her own dying and is a way people have historically chosen to die in many cultures.

The VSED Handbook, by Kate Christie, details the steps Christie’s family took when her late mother, Jane, chose a peaceful death via VSED to escape the final brutal stages of Alzheimer’s disease. She covers actionable steps, what to expect from each stage of the VSED process, and challenges and unexpected gifts she experienced accompanying her dying mother on her final journey.

VSEDresources.com contains a wealth of information, including a downloadable PDF of equipment and supplies to pick up ahead of time; links to videos such as Rosemary Bowen’s fast (filmed by her daughter); and an interesting, recent blog about the current discussions around using VSED as a bridge to MAiD for people with dementia. (Note: The Bowen video is also available on the EOLCCA site.)

Calkins suggests clients with dementia create two videos prior to VSED, one of the person saying that he or she wants VSED and why, and another of the person reminding him/ herself they want this, which can be used as a gentle reminder if the person forgets.

EOLCCA has volunteers with personal experience with VSED and are available to talk and answer any questions you may have.

IV. Voluntary Aid in Dying clinics in Switzerland

Finally, you can go to Switzerland, where you do not have to have a six-month terminal diagnosis. “That’s the only country where you can come from a foreign country and get help with MAiD,” Calkins explains.

Three popular clinics include Dignitas, Pegasos Swiss Association, and Association lifecircle. Each clinic does things a bit differently, but there is still a process: you have to apply, and the total cost all in (including travel) is around $10,000.

Amy Bloom’s 2022 book In Love: A Memoir of Love and Loss, offers an intimate account of her experience supporting her husband, who had dementia, to use Dignitas.

Options may be more limited in the case of dementia, but options there are.
If you have any questions, please call us.

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Antonia Kao is an interdisciplinary artist, stay at home parent who unschooled her now-15-year-old daughter through age 13, and current End of Life Choices (EOLCCA) Client Volunteer. She’s grateful for a conversation with her younger sister, geriatrician Dr. Helen Kao, that helped her find EOLCCA (with which she began volunteering in September 2022) and the University of Vermont Medical School Death Doula training (which she completed that same winter).

The VSED Handbook

“VSED is a marathon, not a sprint, and like a marathon, takes lots of preparation.”

 -Kate Christie

Kate Christie’s The VSED Handbook, a Practical Guide to Voluntarily Stopping Eating and Drinking is a timely addition to an ever-growing body of literature and increasing discussions about end-of-life choice.  End of Life Choices California receives numerous queries about VSED and it is one of the most viewed pages on our website.

The VSED Handbook, published following the VSED death of the author’s mother, is a guide to how to control the timing of one’s death by voluntarily stopping eating and drinking all foods and fluids. VSED, as the author explains, is an age-old method of dying, legal anywhere in the U.S. It is used mostly by elderly, frail individuals suffering from a poor quality of life, who don’t have a 6 month terminal diagnosis and are not eligible for hospice care or medical aid in dying (MAiD), if legal in their state. It’s the ultimate act of self-determination.

Immediately, I found many parallels and useful tips that can be offered to our clients, most of whom are exploring all end-of-life options. Here are just a few:

 

  • Counseling clients and their family members regarding the individual’s right to choose. Helping the team come to terms with the fact that their loved one understands they are giving up some possible good days in order to avoid bad days, weeks, or months, due to the unrelenting progressive nature of their disease.
  • The author emphasizes there are numerous ways to plan ahead and prepare well, including arranging for 24 hour in-person support for the duration.
  • Creating the atmosphere, preparing the physical space where the person will ultimately die. Having a choice, with near-certain dates, gives family and friends the opportunity to connect deeply with their loved one, and offer heartfelt goodbyes.
VSED Handbook, Kate Christie

Again, Kate emphasizes for us, dear readers, that individuals choosing to use VSED are making the choice to leave this world a little early, on their own terms, due to the reality that their illness will cause them to experience progressive losses of their selves, their personhood, their autonomy, and their dignity, and they are choosing to avoid these losses.

I highly recommend The VSED Handbook to anyone interested in learning more about this end-of-life option. This book is a love story, a guide, a reality check, and ultimately, an entire tool box both for the individual who is considering using VSED and his or her  loved ones.

If you, or someone you know, are interested in learning more about VSED, please call 760-636-8009 or contact us here. One of our highly trained volunteers will be able to discuss this option with you and answer all your questions. To learn more about this excellent resource on our website, click here.

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Lynne Calkins is a founding director and current board member of End of Life Choices California.  She is also honored to serve as an active client volunteer. She developed EOLCCA’s client services volunteer program, launched EOLCCA’s MAiD Bereavement Group, and is a frequent speaker to a wide variety of audiences on end-of-life options. She campaigned vigorously for the passage of California’s End of Life Option Act in 2015 and is eternally grateful for the legacy of Brittany Maynard that helped make this law a reality for all Californians. She is passionate about the individual’s right to choose a peaceful death at the end of life.

EOLCCA supports a strong team of experienced volunteers throughout the state, ready to help anyone, anywhere in California with information and support regarding all end-of-life planning and choices, including aid in dying through the California End of Life Option Act. You can find comprehensive information on our user-friendly website. EOLCCA is a 501(c)(3) nonprofit organization, and we rely on donations from individuals and foundations to enable us to offer these services at no charge to our clients. To support our work, find volunteer opportunities, or request an educational presentation for your group, please visit ways to help.  Thank you!

If Only We Had Known

We’d like to share a story with you about a friend of EOLCCA who attended our Bereavement Group after her husband died using medical aid in dying (MAiD). She joined us recently to tell her story at a Palliative Care Physicians conference where we were on a panel, and it was so moving we decided to share it with you. Please meet Trudy, a lovely person from southern California. (Her last name is withheld to protect confidentiality.)

Trudy has a Western Swallowtail butterfly tattooed near her heart, a constant reassurance of the presence of her beloved husband, Gary. As he lay dying on their flower-filled patio, Trudy remembers “the wind chimes chimed, and I saw a Western Swallowtail butterfly – the way he always comes to me now . . .”

photo of a Western Swallowtail Butterfly

Gary’s final years had not been so filled with grace. First diagnosed with stage 4 lymphoma in 2019, he underwent months of chemotherapy and, later, a bone marrow transplant in another city. By late 2022, Gary was back home, but weakened. He and Trudy were briefly optimistic when a scan showed no cancer, but it turned out to be only a short reprieve.

Palliative Care vs Hospice

In January of 2023, Gary accepted palliative care – “which we had soundly rejected earlier,” Trudy explains, “because it felt like we were giving up on curing Gary of cancer.” Hospice care was not an option at this point because Gary could not go on without regular transfusions and trips to the hospital to drain fluids. Pain medications were inadequate, and Gary’s palliative care team seemed unable, or unwilling, to make necessary changes. It was at this point that hospice was called in.

Medical aid in dying

Late in this journey, the pair learned of the California End of Life Option Act, which empowers dying individuals to take control of their final days and weeks. It’s what they learned along their journey that Trudy hopes might help others avoid some of the pitfalls that consumed precious time and energy.

Unnecessary roadblocks

“I was a resource teacher,” Trudy says; “and know how to use technology.” But even with those skills, when Gary was diagnosed with a probable life-ending cancer, they were denied complete and detailed information about their options. “There ought to be a policy,” she says now, “that people dealing with terminal patients at least have a simple requirement  to hand them a brochure.” In fact, physicians uncomfortable discussing terminal diagnoses (as theirs was) or unsupportive/uneducated about the California End of Life Option Act, is sadly often an early roadblock to empowering patients with the information they need.

“If only we had known . . .”

Understanding what services are available, often mandated, is critical to those dealing with terminal diagnoses, Trudy emphasizes. In their case, determined to pursue every available possibility for a cure or remission, she cites best and worst case scenarios and many in-betweens. Their social worker was excellent (“Everyone should have a knowledgeable social worker!”) and provided both help and comfort. But a thorough understanding of two critical pieces of end-of-life care, early on, would have made a difference. For example, “we strongly rejected palliative care,” Trudy says, “because it felt like we’d be giving up. It was very unclear to us. Everyone should know the difference between palliative care and hospice and the important benefits of both.”

Trudy also urges better information and understanding about pain management. Gary’s pain medications proved inadequate as he neared the end of his life and the two of them argued for changes to alleviate his suffering.

Palliative care is focused on symptom relief, including pain relief, with a goal of improving the quality of life for both patient and family, while receiving treatment. It does not require a diagnosis of terminal illness or that all treatment be forgone.

Hospice care is for the terminally ill with an anticipated life expectancy of six months or less, when cure is no longer an option. The focus shifts from treatment to symptom management and quality of life for both the patient and their family/loved ones.

Trudy and Gary’s journey was the two of them throughout. A couple of introverts “who would never have gotten together if online dating hadn’t existed,” they met online in 2006 and married in December of 2014. Throughout their marriage, they enjoyed hiking and being in nature, even naming their company for a California sunflower. After Gary chose to use MAiD, when the time came she and friends filled the patio to overflowing with flowers and surrounded him with “a bubble of beauty and love.”

As part of his legacy, Trudy is helping spread awareness about end-of-life care and medical aid in dying, which provided Gary with the the calm and peaceful death he wished for.

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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 – like Trudy and Gary – 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 willing to prescribe. We wish we had met Trudy and Gary sooner to provide that help when they really needed it.  EOLCCA is a 501(c)(3) nonprofit organization and we rely on donations from individuals and foundations to support our work. To make a contribution or request an educational presentation, please visit ways to help.  Thank you!

Thanksgiving. Giving Thanks. Giving. Thanks.

There are so many inspirational quotes and phrases about Thanksgiving focusing on gratitude and thanks, one quote from Erma Bombeck stands out to me: “I come from a family where gravy is considered a beverage.”

Ok, maybe not the most consequential thought, but as we at End of Life Choices California (EOLCCA) consider our work around the weighty (Thanksgiving meal pun alert!) issues surrounding death and dying, living and dying with dignity, and controlling our own fate, it’s important to remember that sometimes humor –  puns, physical humor, even gallows humor – is something that can sustain us during difficult times.

Particularly during the holiday season, as our thoughts often turn to loved ones no longer with us (family, friends, Dick Clark on New Year’s Eve…), we encourage you to take a moment to recall a heart-warming and humorous memory of a loved one and appreciate the smiles and joy shared.

Thankful

We are thankful for the many people associated with EOLCCA:

    • the hundreds of Californians who have reached out to us this year for information, guidance, and support as they or a close friend or family member seek control and dignity at the end of their lives.
    • the over 45 Client Volunteers throughout the state who are there every day to answer questions, guide people through their end-of-life journey, and even be present at their bedside as a knowledgeable and calming influence on the day of a planned death.
daughter and father
    • the health care, hospice, and medical professionals who refer their patients and clients to us for additional information and support.
    • our donors, who allow us to keep the lights on, raise awareness, and continue to provide these important services, all provided at no cost to the client.
    • our board members who work hard to keep us on track and all contribute their time and talent serving on one committee or another. 

The pyramid falls without the strength, compassion, and support from each of these groups.
A collective THANK YOU to all of you!

Looking Ahead

In giving thanks for what has transpired over the last year, we also turn an eye to the future. For us, that means:

  • developing and offering an Advanced Training to certified Doulas from anywhere in the country on all the end-of-life options, including Medical Aid-in-Dying
  • recruiting and training more volunteers to serve the increasing demand for our services in more rural and medically underserved areas of California
  • expanding our speaker program to hospice staff and to the community at large
  • screenings of relevant movies to provide education and information to the general public about medical aid in dying.

During this season of Thanks, we also ask you to consider Giving.

We are a small but growing organization so every donation counts and is impactful!  You can make a secure online donation here or you can send a check to 153 S Sierra Ave #30, Solana Beach, CA 92075.  We can also accept donations of stock (a good tax strategy if applicable to you) or from your Donor Advised Fund.  We are a 501c3 nonprofit organization, Certified GuideStar Gold, EIN 83-3560210.

Thank you

One final Thank You to YOU for reading!

On behalf of the Board and Staff of EOLCCA, we all wish you a peaceful and fulfilling holiday season, however you choose to observe,

Judy Epstein
Executive Director


EOLCCA supports a strong team of experienced volunteers throughout the state, ready to help anyone, anywhere in California free of charge with information and support regarding all end-of-life planning and choices, including aid in dying through the California End of Life Option Act. You can find comprehensive information on our user-friendly website. EOLCCA is a 501(c)(3) non profit organization and we rely on donations from individuals and foundations. To support our work, or request an educational presentation, please visit Ways to Help.  Thank you!

MAiD MYTHS

In California, we are very fortunate to have won the right to medical aid in dying (MAiD). With the California End of Life Option Act (ELOA) in effect since June 2016, MAiD has been legal and available for more than seven years. The law provides the ability of a physician to write a prescription for life-ending medication for a terminally ill patient, and for that patient to self-ingest the medication. Since California’s law was passed by a legislative vote, and not by a public referendum on the ballot, surprisingly few people in a state as large as ours know about this option.

Additionally, because we live in a time of widespread misinformation and disinformation, EOLCCA receives a lot of inquiries from people who believe many of the myths circulating about medical aid in dying.


The purpose of this article is to dispel those myths and provide you with the facts, according to the ELOA.

Fact versus myth road sign with two arrows on blue sky background. White two street sign with arrows on metal pole. Two way road sign with text.

Myth #1: It is complicated to access MAiD.

FACT: It is not complicated once you have the required two physicians to work with (an attending physician and a consulting physician). Often the attending physician has a consulting physician already at hand. The law requires oral and written requests of two physicians who agree that you are eligible (meaning life expectancy of six months or less), just like the eligibility requirements for hospice. One of the services we provide to people who reach out to us is helping them talk with their own physician about prescribing and, if the physician will not participate as allowed by the law, we help them find a new physician who will prescribe.

Myth #2: MAiD requires too much paperwork.

FACT: The requesting patient only needs to complete a one page form. The REQUEST FOR AN AID-IN-DYING DRUG TO END MY LIFE IN A HUMANE AND DIGNIFIED MANNER form can be found on our website.

Myth #3: You must open and mix 100 capsules of medication.

FACT: This used to be the case, but now the medication arrives at the home in the form of a powder in a small bottle, dispensed from a compounding pharmacy. It consists of a combination of medications to which two ounces of water or apple juice are added, just prior to taking. Once mixed, it becomes a milk-like liquid. After consuming all the medication within two minutes, the patient generally falls asleep within five minutes and goes into a deeper and deeper sleep, and dies peacefully, the way most individuals say they wish to die. If the patient cannot swallow, there are other ways to self-ingest the medication according to the law. A knowledgeable physician can discuss these options.

Myth #4: A medical professional (MD, RN)  must be present when the MAiD medication is taken.

FACT: A person may take their medication with anyone present whom they wish. Anyone, including you, may mix the medication. But we feel that no one should die alone. We provide experienced, highly trained volunteers who are available to be with clients and their families to offer support, if requested.

Myth #5: You must have resided in California for at least six months in order to access MAiD.

FACT: The ELOA says nothing about the length of the residency requirement. Any place of residence in California, whether on your own or with family/friends, is sufficient to seek medical care in the state.

Myth #6: MAiD is euthanasia.

FACT: Euthanasia involves the administration of lethal medication to an individual by a medical professional. MAiD laws in the US require the individual to self-ingest, by swallowing or pushing a plunger by themselves into their digestive system.

Myth #7: MAiD is suicide.

FACT: MAiD allows an individual who would otherwise wish to continue living but cannot due to a terminal diagnosis without any chance of recovery, to plan for the day, time, and place when they may die peacefully. Suicide is committed by someone who is usually not dying and often suffering from mental illness. The ELOA states MAiD is not suicide in four separate places in the law.

Myth #8: Life insurance will not pay out for someone who uses MAiD.

FACT: By law, life insurance, wills, and contracts are unaffected by someone who chooses MAiD. The death certificate states the cause of death as the underlying disease (cancer, heart failure, COPD, etc.), never MAiD or suicide.

Myth #9: If I go through the process and receive my MAiD prescription, I must take it.

FACT: You can always change your mind, even on the planned day. You are in control. One-third of Americans in states with medical aid in dying who obtain the MAiD prescription never take it because they can relax significantly, knowing they have the medication if they ever need it.

Please feel free to call or email us anytime with questions or concerns at 760-636-8009 or info@endoflifechoicesca.org. Our volunteers are available to help you and we do not charge for our services.

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Lynne Calkins is a founding director and current board member of End of Life Choices California in addition to serving as an active client volunteer. She developed EOLCCA’s client services volunteer program, launched EOLCCA’s MAiD Bereavement Group, and is a frequent speaker to a wide variety of audiences on end-of-life options. She campaigned vigorously for the passage of California’s End of Life Option Act in 2015 and is eternally grateful for the legacy of Brittany Maynard that helped make this law a reality for all Californians. She is passionate about the individual’s right to choose a peaceful death at the end of life.

EOLCCA supports a strong team of experienced volunteers throughout the state, ready to help anyone, anywhere in California at no charge with information and support regarding all end-of-life planning and choices, including aid in dying through the California End of Life Option Act. You can find comprehensive information on our user-friendly website. EOLCCA is a 501(c)(3) nonprofit organization and we rely on donations from individuals and foundations. To support our work, or request an educational presentation, please visit ways to help.  Thank you!

Eggs in Purgatory Book Review

Spoiler Alert: We know that parts of this book review are hard to read, but we believe it is worth sharing. The reality is that self-medications can go wrong, not all hospices are the same, and every experience is unique. EOLCCA was founded in large part to address and try to alleviate all of these issues and more, by providing information and support to people who contact us.

What if your elderly parent wanted to end his suffering – but didn’t have a terminal diagnosis?

What if you were honoring a loved one’s wishes – but began feeling, guiltily, that maybe you “just wanted him to die”?

Award-winning author Genanne Walsh examines some of the most complex questions that confront terminally-ill individuals and family members wanting to help and support them.  Facing life’s end is no easy task. Walsh’s father Gene faced his own end fearlessly and early, but when it arrived there were roadblocks for him, as well as for his loyal and supportive daughter, that they could never have anticipated.

 

Favorite breakfast dish

In her excellent new book, Eggs in Purgatory (the title references a favorite breakfast dish), Walsh leads readers through and around those obstacles with her. The tale takes barely 80 pages of text – it’s more long-form essay than hefty book – but brings valuable lessons and insight.

“All my life,” Walsh writes, “I could count on two things from my father: love and upheaval. I felt acutely when he was dying that it was my destiny to walk that road with him . . .”

Raised Catholic, Gene Walsh served as a priest for ten years. After meeting his future wife at a Catholic university in upstate New York, he left the priesthood and the church. But he remained deeply spiritual. Part of that spirituality was a view of death and afterlife his daughter describes as a belief that “his spirit would continue: stardust, essence, universal oneness.”  It supported his emphatic wish for a quick exit from this life, with no intervention to extend it when the time came. To that end, Gene Walsh did all the right things: wrote down his instructions, talked with his physician and his daughter – nobody was in doubt about his end-of-life wishes. (See the Planning tab on this website for help with your own!) But this is not always enough.

 

She dialed 911

Eggs in Purgatory opens with the story of Gene Walsh’s suicide attempt. Finding her father snoring but unresponsive, an empty bottle of over-the-counter “sleep aid” pills on the bedside table and vomit on his shirt, his daughter could not leave him to whatever might come next. She dialed 911. The call led to a weeklong hospital stay that began with a psychiatric hold and ended with diminished mobility added to his already failing hearing and eyesight and a list of other non-life-threatening afflictions. Discharged with instructions about getting better, he had little enthusiasm for living.

A wish to quickly die

After his wife’s death, Gene had moved to California, into a downstairs apartment below the home of his only child, daughter Genanne, and her wife Lauren. It was there, at Christmas, not long after the suicide attempt, that he explained his decision to stop eating and drinking – invoking the California End of Life Option Act and believing that he would then quickly die. A sympathetic physician honored that decision and referred him to hospice care.

Author Walsh writes of what followed in a wrenching tale of good end-of-life plans gone awry. Gene left his physician’s office almost euphoric. The family joyfully received the hospice nurse, a gentle, empathetic young man who outlined the care that would follow. But joy came to an abrupt end when the nurse called his office to get a sign off from the attending physician. That doctor, after reviewing the case, decided that Walsh lacked a terminal diagnosis as required by the California law and was therefore displaying “suicidal behavior.” This required a report to local authorities, a visit from the police, and a narrowly escaped return to the psychiatric ward.

Eggs in Purgatory Book Cover
Happy ending

There is a happy ending to author Walsh’s small book. It’s no spoiler to say that her father eventually gets the death he welcomed. What she leaves us with are cautionary lessons, and a wealth of insight into questions that can arise when we or a loved one is facing death.

When calls for help and information come to EOLCCA, our trained volunteers work with clients like Gene Walsh and his family to connect with a sympathetic hospice and get the support needed. We are grateful to author Walsh for sharing her story in order to help others avoid the pitfalls her family encountered.   

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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 anyone, anywhere in California free of charge with information and support regarding all end-of-life planning and choices, including aid in dying through the California End of Life Option Act. You can find comprehensive information on our user-friendly website. To support our work, or request an educational presentation, please visit ways to help.  Thank you for your support!

Gifts & Lessons Learned Through Loss

Note: Alison Clay Duboff is a volunteer with End of Life Choices California. Her husband used medical aid in dying on August 3, 2021. Here are some of her reflections after going through the experience.

As sentient beings, we attempt to find meaning in loss. We desperately search for celestial answers to the mysterious reasons “why” to assuage our pain. 

Occasionally a purpose, an enlightened drive, arises from the ashes of grief, bringing meaning to the unimaginable. And that is the true gift.  

Through the loss of my terminally-ill husband, I found that my bestowment was writing. Be it scratching words across a page, speaking into my telephone when the words hit me at inconvenient moments, or sitting at my computer and letting my fingers loose amongst the letters on the keyboard. 

Writing not only brought me immeasurable pleasure and release, but it took on a life of its own and began helping others in my same situation as I shared my innermost, deep, dark, and light emotions to my community online.

This newfound vehicle of helping others morphed into being compelled to help as many people as I could and that is how I became a mouthpiece for personal choice and a volunteer for End of Life Choices California. I’m pleased I strongly encouraged the agency to start a bereavement group for families that used medical aid in dying.

A few times every week, people will stop me on the street and ask me if I am “Alison,” the lady who lost her husband. My collection of words has reached people near, far, and have brought comfort and understanding or a sense of mutual understanding, of being heard, and for me this is the greatest legacy I could have ever imagined or asked for. 

I have learned that the simple gift of a hug from a stranger, or to a stranger, is a beautiful thing in and of itself; surprising and deeply fulfilling, I call it, “humanity.”

I’ve learned repeatedly during my period of grief that people need and seek connectedness and are able to exchange energy even when the topic is uncomfortable.

We are slowly coming out of the dark ages of denial and into the light where we accept the ominous elephant in the corner of the room: Everyone will die, yet when those we love pass away, we are taken aback, surprised and shocked. 

I yearn to help others recognize that the day, the year, or the manner of death might be shocking and unexpected, yet death will come often when we least expect it, too often when we are completely unprepared for that inevitability. But with exception, and if fortunate enough, like my husband, one can choose the day, date, and time of death.   

I see the inevitability of death hiding behind the curtain on opening night. Death is there waiting backstage for the curtain to be pulled apart and to make its grand entrance. If we can learn to entertain the notion that our time on earth is transient, I believe we will live the remaining balance of moments in a much more gratitude-filled existence.

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Alison Clay Duboff is an active real estate agent in Manhattan Beach. She’s the author of Living with Veracity, Dying with Dignity, a book about the experiences with her husband. The book is available on Amazon.

EOLCCA manages a strong team of experienced volunteers throughout the state. We are available to help individuals and their familes in California, free of charge, with information and support regarding all end-of-life planning and choices.  This includes medical aid in dying through the California End of Life Option Act and bereavement support and resources. Find comprehensive information on our user-friendly website. To support our work, or request a speaker, please visit ways to help.  Thank you.

New Report on Medical Aid in Dying in California

We are pleased to share with you the California Department of Public Health’s (CDPH) newly published 2022 Data Report on the use of the state’s End of Life Option Act (ELOA).  The report reflects several key changes that went into effect on January 1, 2022 (via Senate Bill 380) that made the law more patient-friendly in allowing physicians to prescribe medical aid in dying (MAiD) for their terminally ill patients who are eligible under the law. 

One critical provision that went into effect shortened the waiting period from 15 to 2 days (48 hours) between the two oral requests required of the patient to their physician for a MAiD prescription. EOLCCA strongly supported this modification as many terminally-ill individuals who wished to use MAiD endured unnecessary suffering that the law (originally passed in 2016) was specifically intended to alleviate. In this new report, we are gratified to learn that:

“Out of the 1,204 individuals who started the end-of-life option process in 2022 and received a prescription during 2022, 947 individuals, or 78.7 percent, waited less than 15 days between the two verbal requests.”  

Almost 50 percent increase

Equally important to EOLCCA is the fact that the number of people who obtained a MAiD prescription increased by almost 50% compared to 2021. Universal knowledge that California has this law is a critical missing element that persists as a major roadblock for those who might request medical aid in dying. 

Too many people who might qualify remain woefully uninformed about the possibility of MAiD at key health care decision points in their end-stage terminal illnesses.

One of EOLCCA’s primary objectives is to continue to reverse that trend through comprehensive targeted education programs about the ELOA to hospices, medical practices, diverse local community organizations, houses of worship, and retirement communities. This year alone, our Speakers Bureau has already provided 42 educational presentations around the state. Please visit our Speakers Bureau webpage to learn more about this program.

volunteer at bedside
More good data

Several other data points of the report include: 

  • The vast majority (over 95%) of those who used MAiD in 2022 were receiving hospice and/or palliative care.
  • Those who utilized MAiD were numerically more white and had completed more education than the state’s diverse population. This is an area of extreme importance to EOLCCA as we work to expand our outreach and education efforts. 
  • About one-third of the people who receive a prescription never use it. 

To this last topic, anecdotal evidence we’ve accumulated through our counseling of scores of patients, indicates to us that having the prescription in hand has its own palliative effect, giving a measure of comfort and control to the patient. As a result, their anxiety goes down, their pain level goes down, and they are more able to relax into their dying process and never feel the need to take the medication. What a wonderful gift for people to have. 

I encourage you to read the report for yourself. It discusses in much more detail what peoples’ diagnoses were, their demographics and many other interesting factors. The report can be accessed here.

The report also showed that 84.5 percent of those who utilized MAiD in 2022 informed their family of their decision. In keeping with August designated as National Make A Will month, if you need assistance in preparing your own Advance Care plans, to better inform yourself or facilitate end-of-life discussions with your loved ones, please contact us.

In conclusion, while the results of this report show some encouraging advances, there is still much more work to be done. If you wish to inform, educate and help more terminally ill people access a peaceful death on their terms, please learn morevolunteer, or consider supporting our work by making a donation here