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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.

Medical Aid in Living

People seeking MAID are vibrant, courageous, and thoughtful. They know who they are, define the rules of their life, and are clear on their values, including the meaning of living. My last visits with them are typically marked by a sense of clarity and peace.”

 

Benzi M. Kluger, MD, MS, Medical Aid in Living
JAMA Neurol. Published online August 24, 2020

Dear Readers,

We are sharing this excellent article from JAMA Neuro, recently published online, because it is a beautiful tribute from a physician to medical aid in dying (MAID).  For many people there is so much mystery about the process of medical aid in dying.  For some, as with any uncertainty, this can bring anxiety and fear to the table.  As someone who has worked with people facing their dying for nearly ten years, I never cease to be moved at witnessing the grace, courage and honesty that people show when facing end of life decisions. The author of this piece does a beautiful job of describing not only his patient’s journey in accessing medical aid in dying, but also those of others.

I had the honor of speaking to a young woman recently who reached out to End of Life Choices California.  At 35 years old, she is bravely facing a Stage IV breast cancer diagnosis for which she has been told there is no cure.  She is just realizing that she not only needs to plan her life, but needs to plan her death.  We discussed many things, but the one thing that I think brought her comfort was hearing about what it is like to actually die from taking a lethal dose of medication through MAID.  I shared with her that through the many experiences I have had over the years of attending MAID deaths, the overarching feeling I have always observed and experienced is one of peace.  When people who are already dying are given the chance to be in the driver’s seat of their experience, rather than allowing the disease to wreak havoc in their lives and the lives of their loved ones, there is a peacefulness that comes with that.  Family is present, love is shared, goodbyes are heartfelt.  The person dying is able to relax and be held in love as they die.

What more could any of us want, truly?

peaceful river scene

My experience with this is why I have stayed active in the field and why I helped spearhead the formation of End of Life Choices California.  In the article, the physician said the referring physician “had not developed a response to requests for MAID and did not know if she would participate”.  We see this all the time here.  Part of our mission is to provide education to physicians and hospices in order to help eliminate this major barrier to end of life care.  We can help a physician wishing to learn more about MAID by putting him/her in touch with other physicians who are experienced and willing to offer guidance and support.

 

We also encourage all individuals who are thinking about their end of life care and wishes to have a conversation with their primary or specialist physicians NOW.  These conversations take time.  Many physicians are still grappling with how to deal with a MAID request. It is important to identify a physician who will support your end of life choices, whatever they may be, prior to a time you are actually ready to act on those important decisions. Discussions about Advance Care Planning with family and physicians are helpful in this regard. You can find guidance on our website here.

California is making great progress.  The 2019 California Department of Public Health’s annual data report on the use of California’s End of Life Option Act showed that 37% more physicians prescribed MAID than in the previous year.  That gives us hope that we will one day be out of a job.  But for now, we continue to help those who contact EOLCCA looking for support and information about end of life choices.

If you would like to support End of Life Choices California’s work, please make a donation.  We are very grateful for gifts of all sizes.  Thank you.

 

California End of Life Option Act 2019

The recently released 2019 data report on the California End of Life Option Act highlights, among other things, the welcome progress made in the increasing number of physicians prescribing medical aid in dying.

Dear Readers,

In 2019, 246 unique physicians wrote MAID prescriptions, up from 180 in 2018, an increase of 37% from the year before.  This matches the 37% increase in the number of prescriptions (618) written in 2019, up from 452 written in 2018.

This is trending in the right direction.

stethescope

More needs to be done

From our experience over the past 12 months, fully one third of all calls we receive pertain to seeking help finding a physician who participates in the California law.  While the 2019 year data is encouraging, the report also indicates that there is more work to be done to ensure that all individuals facing a terminal illness are both informed about and have access to medical aid in dying.  The report reflects a disappointing lack of diversity among the people who received prescriptions for medical aid in dying and used MAID last year in this culturally rich and very diverse state.

Specifically, according to the report, 353 White Californians (87%) utilized the law in 2019, while comprising just over a third (36.5 %) of the total population of California. Alternatively, 5 Black (1.2%), 26 Asian (6.4%), and 16 (4.0%) Hispanic Californians accessed the law in 2019, not even closely matching their demographic representation of the state’s population (Black: 6.5%; Asian: 15.5%; Hispanic: 39.4%).

CA DPH logo

As attention throughout the country has become laser-focused on racial justice, it is past time to remedy this specific disparity in access to medical aid in dying under the California End of Life Option Act.

Out in the Community

While we have continued to provide in-service training sessions for hospice personnel through video conferencing during the stay-at-home restrictions and continue to work with clients extensively by phone, once the threat of COVID-19 is finally mitigated, our EOLCCA volunteers look forward to getting back out in the community.  We will direct our outreach efforts to broaden end-of-life planning education to reach a more diverse community of terminally-ill Californians.

We want to ensure that every person is aware, early enough in their terminal diagnosis, that in addition to accessing hospice care, he/she may qualify for California’s End of Life Option Act and if so, has the right to request a physician’s prescription for medical aid in dying.  If they would like an EOLCCA volunteer to help them navigate the often cumbersome and lengthy process involved in accessing MAID, including finding physicians who participate, as always, we will be there to support each person and their family members for as long as they would like our help.

We are growing up

End of Life Choices California is growing up.

We launched  in February 2019 as  just the spark of an idea.  An idea full of purpose, caring, enthusiasm and commitment.  The four of us came together to create a new nonprofit dedicated to providing accurate information and personal support to the seriously and terminally ill people of California.  We decided to name our organization End of Life Choices California to represent choice at the end-of-life. And as you will see, we have already come a long way.

On our way!

Since early February, we filed the appropriate papers with the State of California to form a non-profit organization. We built a resource-rich website that is very user friendly and welcoming. We are writing a regular blog, and getting new subscribers every day (subscribe here.) We have a Facebook page with more than 100 “likes” (like us!). We are preparing funding proposals and developing marketing and fundraising plans. We have formed two excellent teams to help guide us: our esteemed Board of Directors and a carefully chosen Advisory Committee. Our founding directors formed an Organizational Management Team which currently manages our day-to-day operations and volunteers. Our strategic plan includes continuing to develop a statewide service model and hiring an Executive Director, Program Manager, and Development Officer over the next 12-24 months.

First Training

We held our first Client Advocate Volunteer training in Los Angeles in early June and are holding our second Client Advocate Volunteer training in San Francisco on August 18, with another southern California training planned later in the Fall. See all our events here. Be sure to let us know if you’re interested in becoming a volunteer.

We have been doing all of this on faith, commitment and a deep sense of knowing we are doing the right thing: meeting the needs of Californians facing end of life decisions with factual, legal, and compassionate information and personal support.  We have fielded dozens of phone calls and provided support to a number of dying clients. We have already made at least a dozen presentations to community groups, senior centers, and hospices. We want to do more! Please feel free to share your ideas with us and also share about us to your friends and colleagues who might be interested in any service we can provide, or who may be looking for a speaker. Forwarding this blog post is a great way to do that.

Finally 501(c)(3)

Lastly, and importantly, we are happy to report that we recently received a letter from the Internal Revenue Service congratulating EOLCCA on being recognized as a tax-exempt non-profit public charity organized under Internal Revenue Code section 501(c)(3), back-dated to the day we incorporated in February, 2019. This means that if you want to help us keep growing by giving us a gift, those gifts may now qualify as a charitable deduction on your tax return.

We are thrilled that our early work has laid the groundwork for this growing organization that will make a difference in peoples’ lives.  We are truly growing up.  And, yes there’s more! We are honored to have received our first major donor gift of $10,000!

It is so gratifying to know that others believe in our mission as much as we do.

So no more training wheels for us.  We are moving forward purposefully, step-by-step, knowing we are doing something truly worthwhile for California, and trusting you will help. Together, we can advance public understanding and compassion for those making thoughtful decisions about managing terminal illness and their dying, and help bring peace and comfort to the loved ones who care about them. There is a social movement and change happening that is improving end of life choices and decision-making.  We are proud to be part of it.

If you would like to help us continue to grow our services and client support program, please visit EOLCCA  to make a donation online, or send a check to EOLCCA, 530 S Sierra Ave #30, Solana Beach, CA 92075.

With gratitude for your continuing support,

Judy, Karen, Claudia & Lynne
Founding Directors

 

The Elephant In The Room

Photo Credit: Bizarro Comics

CAN WE TALK ABOUT DYING?

By Lynne Calkins

“Make friends with death. Get comfortable with it, and you will have a much fuller, happier life.”  Seriously? Sounds kind of weird, doesn’t it? Who wants to be friends with such a taboo subject? Sounds kind of scary, maybe makes us a little sad.

Death is definitely “the elephant in the room” that no one wants to talk about, especially while we are young and healthy but also when a loved one is seriously ill.

I recently heard Dr. Bob Uslander, of Integrated MD Care in Del Mar, CA (and a member of End of Life Choices California’s Advisory Board) whom I greatly admire say, “make friends with death” on his regular podcast.  Dr. Uslander is considered an expert on death and dying and living. He is a palliative care physician who helps people with chronic, serious illnesses feel as good as possible and enjoy the last chapter of their lives as much as possible.  Often, these are people who, even though they do not want to die, accept that it is inevitable, and they talk about their dying, that “elephant in the room,” and how they envision it. They have taken control over their dying; they feel lighter, empowered.  “Dying is the one thing we all do,” he says, so why not embrace it?

What does he mean by “get comfortable” with death?  I believe he means that because we all die, we should bring this topic out of the closet, shine a light on it, and talk about how we would want our dying to be.  I know that for me, like most people, I would like to die at home, with my husband at my side. I have talked about it aloud to my spouse and children and named the person to speak for me if I am unable to do so.  I’ve written it down in an Advance Directive (AD), signed it and had it witnessed. I have given copies to my husband, my children and my doctor; it is in my medical chart. This document clearly directs my doctor and family as to what I want if someday I cannot speak for myself.

I can honestly say that once I had done the above I immediately felt lighter, happier, and liberated; knowing that if something unexpected were to happen, and I was unconscious with no hope of recovery, my family will know what is important to me.  They will try to get me home. What my family doesn’t realize is that this gift to them helps guide them, should this situation ever occur.

There are numerous accounts of people who have said they want to die at home, but sadly, they never told their loved ones, never wrote it down, so when the time came that they were unconscious, from stroke or car accident, they died in a hospital, in an ICU, with tubes in every orifice of their body, because no one knew what they wanted, and the default went to the medical personnel.

Let’s acknowledge “the elephant in the room”:  Let’s admit that we are going to die, hopefully not soon, but that we will 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 family, loved ones, and physician and get comfortable with that “elephant in the room.”  The sooner we do and write down our wishes in an Advance Directive, the more likely it is that wishes are respected. Our family and friends will be grateful to have the opportunity to help us achieve our goals.

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 physician.  If you have any questions, or would like help completing an Advance Directive, please email us at info@endoflifechoicesca.org and let us know how we can help you.

With special thanks to Dan Piraro for permission to use The Elephant in the Room to help us illustrate so clearly the complexity of discussing our end of life wishes.

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End of Life Choices California provides information and personal support regarding California’s End of Life Option Act and all other legal end-of-life options to the medical community and to the public.