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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 🙂

My First Death

I don’t mean that I saw the bright light at the end of the tunnel and came back to the big metal table.
I’m not writing about my childhood dog, Brandy. 

I’m not referring to my first funeral. 

I mean the woman in her 70’s who took her last breath with me by her side. Voluntarily. 

She chose to use Medical Aid in Dying

A couple of days before we entered shelter-at-home because of the global coronavirus pandemic, I sat with an End of Life Choices California (EOLCCA) client who chose to use MAID (Medical Aid in Dying) to end her suffering and end her life. And although I tossed the idea around of waiting for a better time to write and publish this blog post, I realized there couldn’t be a better time. In these days of pandemic, when folks normally might shy away from the conversation, the very topic of death is on everyone’s mind. The statistics will become names and someone you know will possibly die.

He would joke about calling Dr. Kevorkian

I have a large family and was exposed to death at a very early age with many traditional Catholic funeral masses for grandparents, aunts, uncles, cousins, and Mom and Dad. My mother died when I was 8 years old from lung cancer and my father died of ALS in 1993, when I was 22 years old. There is no cure for ALS and it is fatal, with most patients dying between 2 -5 years of diagnosis. Dad would joke about calling Dr. Jack Kevorkian, the doctor who assisted people with acute medical conditions to end their lives. But you also might remember that Dr. Kevorkian was in and out of trouble with the law during those years so it was really just a fleeting thought, more of a joke that Dad would use to make light of the heavy situation. Would he have actually gone through with something like that if it had been a legal option?  I will never know the answer, but I’m sure the choice would have been comforting as his body and quality of life completely deteriorated while his mind was perfectly intact. 

She was declining

Our client “Annie” was diagnosed with terminal cancer and suffering from severe heart issues. Her leukemia had already caused her to go blind. She loved reading. She was well-educated, smart, sharp and witty. When her vision had deteriorated to a point where she couldn’t read anymore, she donated bins and bins of her books. She couldn’t eat the food she loved anymore. She was struggling with moving around her two-story condo. She was having restless nights while trying to sleep. She was physically uncomfortable and declining. So she reached out to End of Life Choices California to ask if we had volunteers who could support her and be with her the day she chose to take her life-ending medication.  When my Client Advocate Volunteer team leader asked me to be a part of this case, I was anxious and nervous. I’d never been in the same room with someone as they actually died. I’ve touched many cold hands during open casket wakes, but never said goodbye to someone or sat with them while they transitioned. I didn’t know what to expect. Will she actually go through with it? What if she changes her mind? How long will it take? Research tells us the time to death can be 30 mins or 10 hours. What will her body do? Will she twitch? Will she make noise? Was she scared? 

Her suffering was over

We had an hour to sit with her between the anti-nausea medicine and the final medication that would put her to sleep and ultimately put her into a coma followed by death….so we asked her some questions. What was she most proud of? Did she have any regrets? These are the types of questions that I have longed to ask my parents…if I could just have had a little bit more time with them. Annie had funny answers, and we laughed and joked with her about the stories of her childhood. Then we helped her get into bed. She had her playlist going on her iPod, the window open and the rainy breeze floating in. As Annie quickly fell into the deepest sleep she will ever have, I saw beauty in her death. The edginess I had been feeling turned to numbness. And then relief. Her suffering was over.

I often become obsessed with getting people’s stories on camera and am constantly photographing and recording everything around me. When I meet someone like Annie, I am sad that the stories she told us will just be molecules that fall to the ground…and then I remember that Annie’s journey is not my journey. However, Annie’s ability to choose her ending is a right I will continue to fight for, in honor of my Dad. 

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

The author’s mother enrolled her in oil painting classes very early on to encourage her artistry. She painted this clown when she was just six. It reflects the appreciation for clowns she learned she shared with Annie.

I was given the gift of courage and creativity by my parents and I will continue to share what I find beautiful around me. It might be a photo of a flower, a beautiful dish I cooked, or a funny interview with a 6-year-old. 

Life and death are both beautiful. And when you face death, you begin to see more of the beauty in life. 

Laura De Merchant, an accomplished photographer, observer and recorder of life journeys, serves as a Client Advocate Volunteer for End of Life Choices California in the San Diego area. Once life becomes normalized again with the pandemic behind us, Laura and her fellow volunteers will again be able to visit with our clients in person and support them in obtaining MAID and determining the care they want during their end of life journey. Our volunteers are also eager to speak to community groups interested in learning about the California End of Life Option Act, Medical Aid in Dying (MAID), preparing an Advance Health Directive,and finding comfortable ways to begin such conversations with one’s health care providers and loved ones. Please go to our website to learn more about our services or call 760-636-8009 to speak to a volunteer.

 

Cycles of Living and Dying…

Originally published March 4, 2020 and reprinted with permission

Sebastian entered the world eight weeks ahead of schedule, weighing all of two pounds. His lineage is Korean/African American/German, which may offer an insight into how determined, individualistic and utterly beautiful he is. He had emerged from NICU (the neonatal unit at Kaiser) and gotten his fighting weight up to nearly six pounds when he first came to visit my husband Bud.

Bud w Sebastian 1.3.19 

 

 

 

Sebastian (unimpressed) meets his honorary grandfather

That was about mid-January. In early February, about the 11th, Bud’s congestive heart failure of many decades took a sudden downward turn, and by Valentine’s Day he was in his last hours of life on this planet. Sebastian came to visit – well, he brought his parents too, but they are not central to this story.

His mom plunked Sebastian onto Bud’s chest, as he lay breathing heavily on his hospital bed, red balloons snagged from the downstairs dining room floating around. The last deliberate movement I can associate with my husband as he died was his left arm making a sort-of patting gesture toward the tiny pajama-clad bundle of new life on his chest.

We should all sign up for this: old life ending as new life begins. Seeing life as a natural continuum might not make much difference as we enter, but it could help us take more control of our exit – simply by confronting the fact that we will indeed exit. I like to think that my husband’s last moments were somehow heartened by the certainty that life does, and will, go on.

Bud was fortunate in other ways. Having reached his 90th year, he had been vocal about his readiness to die and had expressed his wishes clearly in writing. There are many good options now: hospice or palliative care, enforceable documents like DNRs and POLST forms (Do Not Resuscitate, Physicians Order for Life Sustaining Treatment,) etc. POLST formAnd in a growing number of states there is a right to confront mortality by hastening one’s dying. In California where I live there is the End of Life Option Act which gives terminally ill, mentally competent adults the right to ask their physician for life-ending medication. For many, that is a way to meet life’s end with extraordinary peace.

A relatively new organization, End of Life Choices California, is part of this continuum, this big picture of Birth/Life/Death/Peace. EOLCCA provides information and personal support re California’s End of Life Option Act and all other legal end of life options. It is among several nonprofits dealing with critical aspects of end-of-life care – and helping us all see more clearly that death, like birth, is a universal experience.

When training, recently, to be an EOLCCA volunteer I met a remarkable fellow volunteer named Lori Goldwyn, who may understand both ends of this continuum as well as anyone around. After earning an M.S. degree in Education and working in women’s health for several years, Lori had a homebirth 30 years ago that led her to become a childbirth educator and labor doula. “I came to believe in the value of supporting the natural process as much as possible,” she says, “for both the mother’s and her baby’s sake. A woman in labor contends not only with the pain of labor,” Lori adds, “but with the intensity of realizing that there’s no way out. She can’t escape, quit or divorce this one. The only way out – as is true with the rest of life – is through.”

Eventually the link between natural birth and natural death became clear. “While being with my mother in an inpatient hospice in 2010,” Lori says, “I was struck by the similarities between the birthing and dying experiences.” That epiphany led to her working in hospice and palliative care, as an End of Life Doula, and now also as a volunteer with EOLCCA. Her website, Comings and Goings, reasserts the validity of this continuum with this subtitle about Doulas: Caregivers to those on the threshold points of our Earthly existence.Moon & clouds

“When we get that terminal prognosis, or as we lie dying,” Lori says, “there’s no escaping this reality, this ultimate inevitability.” She quotes the Italian director Federico Fellini: “All we can do is try to become aware that we are part of this unfathomable mystery. We are a mystery among mysteries.”

As he grows, I think Sebastian will also understand this mystery, this continuum, as well as anyone. Sebastian started off in a softly-lit incubator watched over by his mother, a nurse. Weeks later, his honorary grandfather was leaving the planet. And they were able to trade greetings on their journeys.

 ~~~

Fran Moreland Johns is the author of Dying Unafraid (Synergistic Press), a nonfiction book telling of people who did just that.  Inspired by her personal experiences, Dying Unafraid led to other published work on end-of-life issues. Continuing her leadership and long-time activism in this field, she has recently joined the End of Life Choices California Board of Directors and serves as a client advocate volunteer with EOLCCA in Northern California. 

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 our website www.endoflifechoicesca.org for more information. To speak with one of our volunteers, please call 760-636-8009.  All our services are free of charge.

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