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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.

 

Your Voice – Lessening the impact of dementia

The joy of growing up for me was to be on my own, make my own way, and be myself. Of course, accomplishing these goals is more than the compilation of many birthdays, and is often not easy. Yet multiple decades later, I now hold dear many values and viewpoints which make me–me! And the same is true for many of us, across all walks of human life. The opportunity to represent and guide your own life is an innate part of being yourself. 

When Dementia Takes Hold

This treasured aspect of humanity is impacted when dementia develops and takes hold.  Medical professionals often talk about Alzheimer’s disease (the most common form of dementia) being one of the most feared diseases because of this impact to “self”–self-representation and self-determination.  

I witnessed this first-hand, watching my grandmother deteriorate from Alzheimer’s disease. Like too many others, the disease slowly but surely removed the ability for my grandmother to represent herself. She could no longer talk and had no capacity to express herself–her wishes, views, or needs. My grandmother passed away after years of 24×7 care in different nursing homes which kept her alive, but sadly were not informed to customize their care to her wishes and needs.

Mother with dementia and daughter
Representing Ourselves Now

While we do not yet have a way to fully avoid the future possibility of debilitating dementia, we do have the opportunity to communicate our own wishes, views, and needs. We can represent ourselves now. The following resources are ways to communicate to both loved ones and health care providers: 

A health care directive for dementia

Developed by Dr. Barak Gaster via the dementia-directive.org and available for download from our site, this directive describes three levels or stages of dementia impact. For each stage, you may select from a set of three goals to communicate the type of care you would want to receive.    

A letter added as an amendment to a general health care directive

Created by author Katy Butler, and shared via the Conversation Project organization, this letter can be used as-is, or as a template and modified per your wishes. It provides a thorough listing of specific guidance for various care and treatment options when one can no longer represent oneself.

A dementia directive or amendment serves to clearly inform loved ones and health care teams.  And though currently neither is legally binding, those who are in a position to care for you will be enabled and encouraged to honor you by aligning future care to your views and wishes. Your own voice will be communicated and clear. 

To read more about this topic, please visit our website.

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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.