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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.  

Honoring National Healthcare Decisions Day

Most of the work we do at End of Life Choices California involves talking with people about dying: addressing their fears, providing support with problem solving, helping them access the resources they need to plan for the kind of death they wish for.  Some people might find this kind of work challenging and even distasteful.  But we love it. 

We TALK about it!  So many people have said something to our volunteers along these lines:  “Thank you for your honest and frank conversations with me. No one has been willing to have them and I am so grateful and feel free from worry now.”

 

Talking to family about end of life choices

Another important aspect of our work is helping people do the necessary preparation in case of a medical emergency, or diagnosis of a serious or terminal illness.  This process is called Advance Care Planning.  We teach seminars on this and enjoy educating people on how to plan ahead.  

One thing people often don’t know or think about is this is important for EVERY PERSON OVER THE AGE OF 18.  All adults should have an Advance Directive and have shared it with their important people. 

A Gift to Family

Talking to family about end of life choices

Therefore, in honor of National Healthcare Decisions Day, on April 16, we are devoting the entire month of April to paying attention to these important matters.  Every week we will post a new blog on a different but related topic on Advance Care Planning.  If you read every one, at the end you will be an expert!  

Please join us in these important discussions.  

To find out more about Advance Care Planning on our website, go here.

To find out about volunteering with our organization, go here.

To make a donation to support our important work, go here.

 

What the World Needs Now

As End of Life Choices California completes its second year (first full year!) and we approach this coming new one, I am struck by what an immense undertaking beginning and developing EOLCCA has been. Claudia, Lynne and I have been running this non-profit organization as volunteers, and we continue to be successful in developing an amazing team of Client Advocate Volunteers who are trained and poised to help any Californian seeking information and/or support in their end of life wishes, at no charge.  It is surprising how many people continue to be unable to access the information they need within their own health care systems.  On the flip side, we are grateful for those systems that can and are willing to provide such information and support.

End of Life Choices California

It’s been a difficult year globally.  Everyone is feeling the effects of Covid-19 and the trickle down economic effect of the pandemic. Politics in the US, and elsewhere, has been tumultuous and painful to watch.  One could become overwhelmed and feel undermined by it all.  I think the feelings must be similar to someone who is facing a terminal illness.  A whole life can change in an instant with a terminal diagnosis and the ensuing challenges that come.

Volunteer powered organization

An Act of Love

I am full of gratitude and hope in the work that we do. I believe that being of service to others is what makes the difference in the world.  I googled “quotes about being in service” and there were so many good ones, I couldn’t pick a favorite.  But for me, being of service is an act of love. And I am full of gratitude for our clients who give us the opportunity to engage in these acts of love, to our volunteers who step up to meet the needs of our clients, and our amazing Board of Directors who are donating their time and energy to help us grow in a sustainable way.

 

What the World Needs Now

I awakened this morning with a song in my head and heart that I hadn’t heard in a long time.  I’m sharing it with you now as I think, even though it was recorded in 1966, it is still relevant today and portrays hope for the future. The song reflects my personal belief as to how we are going to overcome the woundedness and grief of this pandemic and of 2020 in general.  There are nuggets of truth and joy and peace and wisdom in the woundedness if we look deeply enough.

What the World Needs Now – Dionne Warwick

I envision a better year for us ahead in 2021. May you find those nuggets of wisdom and peace in your own life.  And, if you feel inspired to help an organization dedicated to being of service to the terminally ill and their families, we would be truly honored to accept your volunteer application or donation of any size.

With gratitude,

Judy