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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.

Talking with Your Doctor about Your End-of-Life Wishes

When we plan the least

When expectant parents are planning for their newborns, it’s commonplace to seek out trusted medical offices that are aligned with their needs and values. Similarly, it’s a common practice to seek out multiple doctors’ advice when we get injured, or receive a serious medical prognosis. We reach out to family members and friends for their input. Our goal is to feel like we’re in good hands – trusting our doctors with our well-being. This is an understood and common practice that is repeated throughout our lives. However, there is one time when this practice is too often abandoned.  

doctor consult

It’s the time when we approach the end of our lives.

Planning for the end of life is unique to any other human life experience. Raising the topic with family members or friends is not easy.  Talking with our doctors about our end of life is also difficult and not commonplace. Even when confronted with a terminal condition, the sensitivity around death causes many doctors to be reluctant about initiating such discussions and to instead rely on their patients to raise the topic.

So we need to raise the topic of our end-of-life wishes and start the discussions early. Like other times in life, it’s not only our prerogative to prioritize having healthcare providers who are aligned with our needs and values, but it’s also in our utmost interest to do so.  

There are many paths

You have a range of paths to consider when approaching the end of life. We describe several end-of-life options on our website. The available paths we discuss include stopping unwanted medical treatment, receiving care and treatment specific to the dying process (such as with hospice and palliative care), voluntarily stopping eating and drinking, and other options for those who qualify, including the California End of Life Option Act. Guidance for how to discuss these options with your doctor is included on our website here

Another great resource for how to talk about end-of-life options is provided by the organization called The Conversation Project (part of the Institute for Healthcare Improvement). They provide step-by-step guides for how to have end-of-life conversations. One of their guides is focused on talking with healthcare providers; you can find it here

The guide provides practical suggestions for raising the conversation with your doctor.  One suggested statement is: “I want to talk about my goals for care and living with my serious illness.”  Another suggestion shows how a conversation might begin along these lines: ”My nephew recently died in the hospital after weeks of aggressive care. That’s what he wanted, but I don’t want that. I think I might prefer to die at home. How can we make a plan for that when the time comes?”

Every one of us will have our own unique end-of-life experience. Initiating discussions to influence our dying process will lead to conversations resulting in greater clarity and enabling a death with a sense of peace. 

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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.  

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.

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.