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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.

 

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.  

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.  

 

Do You Have an Advance Directive?

Although conversations about Advance Care Planning may seem awkward at first, they often bring family members closer together. 

Talking about death/end of life is deeply personal. Sharing beliefs and desires with those closest to you produces a more intimate relationship.

It takes courage to have these conversations.

It demonstrates your love and deep caring for one another.

couple talking

Advance Care Planning is a process of conversations and directives for all adults that express your health care goals, values, and wishes in case a time arises when you are unable to speak for yourself due to injury or illness.

Here is one way to get The Conversation going:

Q:  Do you have an Advance Directive?

A:  Common responses to that question, with various levels of comfort: 

two men discussing advance planning
  1. A what?
  2. I should but…
  3. I think so?!
  4. Yes, but it needs to be updated.
  5. Yes, so glad!
  6. ……..Silence
    Which response is yours or that of your loved one?  If you would like to get busy creating your AD, get in touch with our volunteers at End of Life Choices California, and/or simply look on our information-rich website here. We will be glad to help you get going with this very important document.

Stefanie Elkins is a guest blogger and a Client Volunteer with End of Life Choices California.  She is also an Elder/End-of-Life Care Coach and Consultant.  Stefanie can be found at Be Present Care in the Los Angeles area.

Can We Talk?

courtesy of Bizarro Comics

They say there are only two things we absolutely have to do: Die and pay Taxes.  April 15 is traditionally Tax Day, and now the day after, April 16, has been designated National Healthcare Decisions Day, in an effort to get people to plan for their dying as well as they do for their taxes.

Elephant in the Room

Due to this pandemic year of hearing daily numbers of Covid deaths and constantly seeing scenes of people suffering and dying, we have a fresh awareness of death.  This heightened awareness is actually helping us talk about death and prompting many families to discuss what they want their dying to look like.  The “elephant in the room” (that thing that we are all thinking about, but not talking about), is actually being acknowledged much more now.  It remains to be seen if 2021 will turn out to be the year more Americans than ever will have embarked on advance care planning and completed their advance directives (ADs).

What is important to you?

If you are serious about telling your loved ones what you would want at the end of life, we at End of Life Choices California (EOLCCA) are here to help you get the conversation going (the most important part) or show you where to find the appropriate forms and what to do with them.  It’s what we do.

Ask yourself: What is most important to you?  What matters most to you?

We are here to help you share with your loved ones exactly what you would want if you were unable to speak for yourself.  Completing an AD is a “game changer” for you and your family; it is a gift, it is liberating.

Let’s bring that “elephant” out of the closet and shine a light on dying:  Let’s admit that someday we are going to die, hopefully not soon, but that we all eventually die.  Let’s get comfortable talking about how we would like to die; where we want to be, who we would like to be present.  Let’s have that conversation about death with our loved ones and write down what we would want in an AD.  The sooner we do this, the more likely it is that our wishes will be honored.

Our family and friends will be grateful to have had the opportunity to help us achieve our goals.

Having the conversation about end of life choices
Take these steps today!

Please go to our website where you will find an advance directive form to download and complete.

Sign it, have it witnessed, and give copies to your loved ones and your physician.

If you have any questions or would like help completing an AD, please email us at info@endoflifechoicesca.org and let us know how our volunteers can help you.