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How We Help Our Clients

When I first joined EOLCCA’s Board of Directors, I decided to go through the volunteer training so I could get a handle on our core work: to help Californians learn about their legal end-of-life options, and to help facilitate their choices. The training was excellent. Afterwards, I spent several blocks of time  being “on call” – to answer initial questions and give people the resources and guidance they requested. I told my colleagues I would probably never “attend” a death because I had not done it before, and I wasn’t sure I was emotionally prepared. I did leave one small loophole: I would do so if other volunteers were not available and our client was ready to take the medication.

Severe pain

Well, that day came! We got a call from Kaiser Permanente’s End of Life Options Program with information about a patient who qualified for medical aid in dying and he wanted to take the medication as soon as it was delivered. Billy (the name I will give him) had cancer with metastases to his bones and brain. He was in severe pain. The medication was on order. He  lived alone and his only brother lives on the east coast. The Kaiser EOL coordinator asked if  EOLCCA volunteers were available to help him through the process.

Since most of our local volunteers were busy with other clients, I agreed to do it, with the understanding that a more experienced volunteer would be available to help me on the day Billy planned to take his medication. I was assured that would happen, since EOLCCA’s practice is to always have two volunteers attend a death together. 

Relieved and… grateful

I visited Billy a few days before he planned to take the medication. As someone who would be at his bedside on the day he takes the medication, I wanted to get to know him a bit, and I wanted him to feel comfortable with me. He gave me a short synopsis of his life. Since we were both avid readers, we exchanged information about our favorite authors. I also reminded him that at any point in time, he could simply decide not to take the medication. He told me that if he had had the medication at that moment, he would take it. He had thought a lot about it, and he was ready. He was relieved and grateful that he lived in a state where medical aid in dying is legal.

Still sure

On the day of the planned death, an experienced volunteer became available and we arrived in Billy’s room shortly after the Kaiser pharmacist hand-delivered the prescription. He had already explained the medication process to Billy. Billy took the anti-nausea medication, the first step in the medication protocol. We again reminded Billy that it was his choice to take the subsequent life-ending medication or not, but once he did, there was no turning back. He told us he was still sure of his decision.

volunteer at bedside
Having time for last goodbyes

Billy’s brother requested a final FaceTime visit with him to say good-bye, and Billy agreed. During that last conversation, Billy gave him some direction about his financial affairs, and asked about his nephew. His brother, somewhat stunned, told him how his nephew was doing and to just make sure he was as comfortable as possible. It was a tearful call, but an important one, and deeply appreciated by Billy’s brother.

After Billy took the final medication, he chatted with us, mostly about his love of books. After ten minutes, he fell into a deep sleep, and passed away peacefully in about an hour with the two of us by his side.

At the end of the day, I felt honored to have had the privilege to support Billy in his choice to use medical aid in dying, and to witness his passing. From the first phone call through the day of Billy’s death, we spent many hours on his case–and this is not unusual. I was also fortunate to participate in the very core of the work we do at EOLCCA: to help our terminally-ill clients find relief from their suffering, and achieve the peaceful, dignified death they want.

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Stewart Florsheim serves on the Board of Directors of End of Life Choices California and chairs its Outreach and Education Committee. He has been an activist and leader in the end-of-life choice movement in California since 2003. During that time he was deeply involved in the effort to successfully pass the California End of Life Option Act in 2015. Stewart has given many presentations on end-of-life choice, including on radio and TV. 

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.

Talking to your Doctor about MAID

When your plans include California’s End of Life Option Act

 

Medical aid in dying is a legal end-of-life option in 11 US states and jurisdictions, including California. Aid in dying has been available to Californians since 2016 via the California End of Life Option Act (ELOA).

Talking to your doctor

Medical aid in dying is a sensitive and personal topic. While I am not currently facing a terminal condition, I take comfort in knowing medical aid in dying would be available if I needed it in the future. Some of you may be in a similar situation. However, others of you may be nearing the end of life with a life expectancy of less than six months.  

If you qualify for the ELOA, these are crucial first steps:

Be specific when talking with your doctor.  

While prescribing aid in dying is legal in California, not all doctors choose to participate. So it’s necessary to confirm whether your doctor supports medical aid in dying. A direct and concise question like: “Will you prescribe medical aid in dying for me using California’s End of Life Option Act?” makes your request unambiguous. You may also choose to first acknowledge all that your doctor has done to extend your life, using a statement like: “I appreciate all the support you’ve given me; yet I’ve made peace with understanding my death is nearing and need to ask one more thing of you . . .” 

Ensure your request is documented in your medical record.

Communicating your request to receive aid in dying is a key requirement of the ELOA. So even if your doctor declines to prescribe such aid, following up with an ask that your request be written down and noted is recommended. (A recent court challenge to the ELOA removed the requirement for doctors to document the request.) If your doctor declines and does not offer a referral, you may reach out to End of Life Choices California and a volunteer can direct you to nearby providers known to support aid in dying. When your doctor accepts your request, and documents it, there’s often an opportunity for a heartfelt conversation about what this means for you. 

For those of you who would want access to medical aid in dying if needed in the future, firstly, ensure you have completed an Advance Directive. In addition, talking with your doctor to express your wishes remains key. 

These are important first steps: 

* Schedule a doctor’s appointment specifically for an end-of-life planning discussion.

Physicians often get behind schedule and can seem rushed. Thus getting an appointment just for an end-of-life planning discussion is a good strategy. When scheduling, you can specify your planned topic, or simply make it a general check-in. (If you use Medicare, your doctor will be reimbursed specifically for an end-of-life planning discussion.) 

* Avoid generalities and use specific language.

Relaying your awareness and understanding of California’s ELOA is a great way to start the conversation. Then staying focused with a direct question like: “If I ever had a terminal diagnosis and was eligible for medical aid in dying, and I asked you to prescribe the medication for me, would you do so?” will bring clarity. 

Being direct about a sensitive and personal topic like aid in dying can be intimidating. But the more clearly you express yourself, the more likely your doctor is to really “hear you” and understand not only your request, but also your priorities and values. 

Refer to this material on our website for additional information about the ELOA and medical aid in dying or call and ask for a volunteer to assist you.       

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Becky Oliver is a volunteer with EOLCCA.  Her professional life has been spent as part of Silicon Valley’s tech industry.  Outside of work, her personal passions include contributing to end-of-life causes, with a specific interest in the nature of care for the aging and those nearing 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.  Please find comprehensive information on our user-friendly website at www.endoflifechoicesca.org. To support our work, please visit www.endoflifechoicesca.org/ways-to-help/.  Thank you.

 

The Day I Die: The untold story of assisted dying in America

Anita Hannig’s The Day I Die: The untold story of assisted dying in America has taken a well-deserved place as the definitive book on medical aid in dying. Want information on how it works? On the history of the assisted dying movement? On the future of legal death with dignity laws? Hannig covers it all, in a book that reads like a personal, informal conversation with the author.

In a recent conversation…

Hannig spoke recently with this reporter about The Day I Die – which is filled with stories of her own experience as a hospice volunteer, and accompanying other volunteers and professionals – and about the work we do at End of Life Choices California (EOLCCA).

“Volunteers are the lifeblood of assisted dying,” Hannig says. “They provide firstline support for families and patients, and it’s hard to overestimate the role they play. In my research, I witnessed how much families and their loved ones leaned on volunteers for their technical expertise but also – and equally importantly – for their human touch and care. In a time of great vulnerability and uncertainty, volunteers help patients navigate the ins and outs of qualifying for the law and accompanying them each step of the way afterward. The emotional labor volunteers put into their work is nothing short of admirable. I have profound respect for their work.”

Hannig, an associate professor of anthropology at Brandeis University, invested five years of study and hands-on involvement in writing The Day I Die. Along the way she accumulated a wealth of stories – poignant, humorous, heart-tugging, enlightening – that she shares in the book.

The Day I Die ,by Anita Hannig

A book to give to those you love

Looking ahead, Hannig says she wants to be optimistic about the future of the law, “but in the current political (or perhaps judicial) climate I am not sure such optimism is warranted. In the long term, however, I do think that we as a society will gradually move into a direction of granting more rights and freedoms to the dying. My hope is that assisted dying will eventually become legal in all fifty states.”

For now, Hannig says “there are still some misunderstandings about all the different steps someone needs to complete to qualify for assisted dying. Most people think it’s more straightforward than it actually is. Or they wait too long to start the process. Many are still under the impression that there’s a “magic pill,” when in reality the protocol of the medications is quite nuanced and complex. My book talks about the fascinating pharmacology of dying in more detail.”

The Day I Die, in fact, talks about the fascinating work of assisted dying in all its important, often difficult, always rewarding details. It’s a book to read, to keep and to give to those you love. 

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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 with information and support regarding all end-of-life planning and choices, including aid in dying through the California End of Life Option Act.
Please find comprehensive information on our user-friendly website at www.endoflifechoicesca.org.
To support our work, please visit www.endoflifechoicesca.org/ways-to-help/.  Thank you.

In Love, A Memoir of Love and Loss

I often receive requests to read and review books. As a result, I have quite a pile of books on my nightstand. And as an avid reader, this is a lovely problem to have. Amy Bloom’s book, In Love, came to me through a different channel. One of our esteemed board members, Fran Johns, recently wrote a commentary of the book that was published in March 2022. I read it, it piqued my interest, and I got the book.

Interestingly, I had just finished reading Still Alice, by Lisa Genova, and then watched the movie again. It had been a few years since I’d seen it and wanted to watch it after reading the book. An excellent story. So my brain was primed for Alzheimer’s disease (not literally!) when In Love landed on my nightstand.

 

Few Available Choices

I have been interested in, concerned about, and curious about Alzheimer’s disease for decades.  When I was in private family practice many years ago, I walked that path with quite a few patients and no matter what anyone tried, we really could only provide comfort care. Still Alice and In Love both depict the almost unbelievable devastation of Alzheimer’s disease. Not only to the patient, but to the family as well.

I thought Amy Bloom did a heart-wrenching job of sharing the experience of watching her beloved start to show early signs of the disease, becoming aware of the probability of the disease even before diagnosis, and finally accepting a clear understanding of what was happening and had been happening for years. She and her husband, Brian, were very brave as they confronted the issues and choices available to them based on their preferences and values.

Threading the Needle

I loved how personal the book is. I ached for them as they made plans, and then more plans, for Brian to find his peaceful death. I felt sad that they were unable to find that peaceful death in their own home and had to go to Switzerland to find medical aid in dying for early Alzheimer’s disease. As someone who has worked in the field of end-of-life care for over ten years now, it was still shocking to me to read her words about how poorly the US has constructed any kind of system for compassionate end-of-life choice. Yes, some states have medical aid in dying laws that allow physicians to legally prescribe medication to end a life. And people in those states are grateful for the choice.

But, as Amy Bloom said, accessing those laws is like ‘threading the needle”. Only a very specific cohort of patients are able to meet the requirements to access the law. A person must a) be mentally capable and understand the ramifications of the choice, b) be an adult and have a terminal diagnosis (life expectancy of less than six months) made by two physicians, and c) be able to self-administer the drugs.

 

In Love, A Memoir of Love and Loss, book cover
Walking Through This Process

Of course, many people, particularly those with terminal cancer, are able to access the law under these parameters with relative ease. They still, however, need to find a doctor who will prescribe the medication. Many people don’t, or can’t, find a physician to prescribe because they live in a rural area, or their own doctor either doesn’t know how to prescribe or doesn’t want to. The law allows for that. I am grateful to be part of EOLCCA as we continue to help people, at no charge, to walk through this process and overcome barriers they might run into. You can read about our services here.

For those who are not eligible for medical aid-in-dying and don’t wish to go to Switzerland, there are other end-of-life choices. We outline them here on our website and discuss these with clients all the time. One of those choices that people find most interesting is Voluntary Stopping Eating & Drinking (VSED), though it  is not everyone’s cup of tea, as Amy Bloom discussed. This is totally understandable. However, we have supported many people through VSED and with adequate support and understanding, it is often a very approachable way of embracing nature’s authentic way of dying. It is seen in many cultures and in the animal kingdom as well. For some comprehensive resources on VSED, click here.

I applaud Amy Bloom’s courage in supporting her husband’s wishes to leave this world in his own way, in his own time. What a beautiful gift she gave him with that support. And what a beautiful gift to us all with this lovely book. Thank you.

End of Life Choices California is a 501(c)(3) nonprofit organization that provides its services of support and information at no charge to our clients. If you would like to support our work, you can do so easily by clicking here. We are grateful for all gifts, large and small.

Please keep an eye out for next month’s blog post by one of our volunteers about dementia and the Dementia Directive.

Why I Do This Work

I’ll call her Hazel – because she didn’t give me permission to tell her story. If I had asked, though, I’m satisfied that she would have happily agreed.

Hazel was 78, and dying of lung cancer. Though hospice had been able to keep her largely pain-free, she was terrified of the possible end-stage symptoms of her disease and had chosen to use the California End of Life Option Act to control her dying. It was early afternoon on the day she had chosen to die. Hazel had said her goodbyes to family – mostly nieces and nephews in other states – and her two best friends had come to be with her at the retirement condo where she had lived for more than a decade.

 

Everything Will Be All Right

In the morning I had come by to help arrange things as she wanted. We put a CD player in a nearby corner, with a selection of her favorite classical music. We opened the window to a cool San Francisco breeze, and propped her up on big pillows. She wanted to go over some documents with the two friends one more time, so I left the anti-nausea and other medications with them and went to get some lunch. 

Around 3:00 I returned, as planned. I asked Joan, another volunteer who is a retired nurse, to go with me because she’d met Hazel and the two had become friends. Hazel wanted to die in the late afternoon. 


This Is Why

When Joan and I walked in, the two friends were seated at the kitchen table, patiently preparing the medication. “She’s already pretty groggy,” they said, “but she wants to see you!” So we went on down the hallway to Hazel’s bedroom.

She was still propped up – leaning a little but comfortably upright. Music was playing, the breeze was ruffling the curtains and drifting over her bed. Hazel looked up and flashed a beatific smile at Joan and me as we entered the room.

“Oh, wonderful!” she said. “You’re here. Now everything will be all right.”

And this is why I serve, with joy and gratitude, as an EOLCCA volunteer. 

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.