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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.

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.

Comfort at Life’s End

When is being comfortable and pain-free not a good idea? Most of us would say never. As we humans approach life’s end, though, that question can get trickier. Or at least more complex.

 

A recent court case stirred renewed discussion of end-of-life care, specifically comfort care and pain control.

Not Guilty

Dr. William Husel, a physician with Columbus, Ohio-based Mount Carmel Health System, was accused of killing 14 patients between 2014 and 2018 by administering excessive doses of fentanyl, a powerful opioid which has become a common, and very dangerous, street drug. Prosecutors argued that he had committed murder; the defense argued that he was providing comfort and the patients – all were in intensive care units – died of their underlying disease. Dr. Husel was found not guilty on all counts in April, 2022. 

 

Nurses defend Dr. William Husel (center) during his trial.

Nurses defend Dr. William Husel (center) during his trial.

Controversy

The controversy spread throughout the Mount Carmel Health System, eventually leading to the resignation of the chief executive and the firing of more than 20 employees. Dr. Husel, though acquitted of all charges, later voluntarily surrendered his medical license. But renewed discussion of end-of-life care can only be seen as a plus. All of us will face life’s end; not all of us will have given thought to what we want that end to look like. Or what choices, including pain management, we might make.

Comfort Care

“It sometimes happens that families and even caregivers are not familiar with comfort care,” says EOLCCA Board Vice President Robert V. Brody MD. This can include end-of-life care, “where the direction switches from curing disease to keeping the patient comfortable (and) can be misinterpreted as hastening death when in fact the medical literature says that keeping people at peace actually prolongs their life.” A primary care, hospice and palliative care, and pain management physician, Dr. Brody is Clinical Professor of Medicine and Family & Community Medicine at the University of CA San Francisco. He is also a leading spokesman on matters of medical ethics in the U.S. and abroad. “Dying people often need high doses of opioids to manage pain,” he observes. “This is done in an entirely beneficent way, and in no way is it meant to cause harm. Those not directly involved may misinterpret these efforts.”

It’s Complicated

As the currently popular meme goes, “It’s complicated.” This was shown in the Husel/Mount Carmel case, and countless other instances since the meme appeared years ago. While opioids are highly addictive, and one of the leading causes of death among Americans under 55, they are widely used in treating dying patients. Most of us would welcome them, if appropriate, as we are dying.

Comfort is a happy state at any age.

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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 Storieswas released in April 2022.

Major Improvements to the End of Life Option Act

EOLCCA is thrilled to share the long-awaited news that yesterday, October 5, Governor Gavin Newsom signed Senate Bill 380.  This new law makes some badly needed adjustments to the existing End of Life Option Act in California, which was signed into law exactly 6 years ago on that very date by then Governor Jerry Brown.

These new provisions will become effective on January 1, 2022. Here is what will be different for anyone seeking Medical Aid in Dying in California in less than three months from now.

  • The new bill reduces the onerous 15-day waiting period between the required two oral requests, to 48 hours.  This is a big change and will help many people access the law who couldn’t previously.
  • Healthcare systems and hospices will now have to post their aid-in-dying policies on their websites. This will be extremely helpful in guiding people as to where they choose to receive their healthcare, especially if they are very sick or terminally ill and wish to request medical aid in dying.
  • The final attestation form will be completely eliminated.  This was a document that the patient was expected to fill out and sign within 48 hours prior to taking aid-in-dying medication.
  • If a terminally ill patient requests medical aid in dying and their physician does not wish to participate, the physician will be required to tell the patient they will not support them.  AND, the physician must document the request in the patient’s medical record and transfer the patient’s medical records upon request.
  • The amendment also clarifies that medical aid in dying medication can be taken within a healthcare facility.

We applaud Senator Susan Eggman for her dedicated leadership on this important issue and all California lawmakers who voted for this new measure, as well as Governor Newsom for signing this amendment into law.

Making a Good Law Better


We are happy to share the following op-ed submission written by Board member Fran Johns who recently sent it to the San Francisco Chronicle.  It has yet to be published, but it is well worth sharing with our readers now.  EOLCCA is very supportive of these changes in the current law and applaud our California lawmakers for spearheading this effort.

Senator Eggman’s Amendment

The California Legislature is facing a rare opportunity: making a very good law better. Senator Susan Eggman’s SB380 amendment to the California End of Life Option Act will do precisely that. Among other provisions, the amendment would reduce the 15-day waiting period to 48 hours.  This waiting period, along with the requirement for a second “attestation” document, has turned out to be one of the flaws of the End of Life Option Act. Because many people put off invoking the law until their final weeks, these provisions became a cruel reality – lives ended in agony before relief could be secured.

CA State Capitol

 

Those of us who have worked with terminally ill individuals, particularly those wanting to explore all options available to Californians, know the End of Life Option Act to have been a blessing ever since it became effective in June of 2016. This new amendment will remove its flaws, giving some flexibility to dying patients and their physicians, and making the act more effective. As an octogenarian who doesn’t handle pain and suffering well and who is grateful for the California law, I am particularly anxious for that law to be as effective as possible.     

Opt Out

The End of Life Option Act (EOLOA) rightly allows for physicians to opt out if they have personal or religious convictions that make them unwilling to participate in medical aid in dying (MAID.) What has become clear, however, is that much of the law is dangerously murky. Healthcare facilities often deliberately obscure the fact that they will not allow participation in EOLA, and patients often discover, too late, that their physicians will not help them. When one is near death, it is not a good time to have to start looking for a new physician or healthcare facility in order to have one’s wishes honored. This new amendment will correct these flaws by requiring healthcare facilities to post their MAID policies on their websites and prohibit them from withholding truthful and accurate information from their patients.

If recent years have taught us anything it is the critical importance of truth and transparency. Truth and transparency are even more important to a dying person, along with autonomy, personal choice and the relief of unnecessary suffering. SB380 covers them all.

Co-authored by Democratic Senators Jim Cooper and Jim Wood, SB380 has the sponsorship of Democrats Cecilia Aguiar-Curry, Rob Bonta, Jim Frazier, Cristina Garcia and Luz Rivas; and has been endorsed by Death with Dignity National Center, Compassion and Choices and End of Life Choices California. It should be swiftly passed.

For more information or to get involved in the work to support this bill, go to Death With Dignity National Center and Compassion & Choices.