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.

 

Our Favorite Music

Dear Friends, 

In this continuing and unprecedented time of disruption and uncertainty, we wanted to share some of our favorite music with you.  Music has been known for centuries to be a healing balm for the heart and soul in times of need, just as it can be uplifting and joyous in times of celebration.  A 2014 article from Psychology Today discusses, “Does Music Have Healing Powers?” and yes, we know it does.  

Calming, Inspiring, Uplifting

I asked our board members and volunteers to send me their favorite pieces which they find calming and inspiring or uplifting, and below are the offerings I received.  We hope you find them to be enjoyable, healing and supportive to you and possibly anyone sharing space with you.

We are still here for you and others

In the meantime, remember that EOLCCA is still here for you or any friend or family member who might currently need support facing end-of-life decisions.  Lately, in addition to spending a lot more time on the phone with our clients seeking EOL support, we have been helping people understand how to lay out their end-of-life wishes with an Advance Directive (Assigning Healthcare Proxy and Living Will).  Here is a link to our website to find information about these matters.  Please call or email if we can be of assistance in any way.

To please, enjoy some of our favorite healing music, perhaps while filling out or updating your Advance Directive!  We wish you and your loved ones peace, hope and health.

Our music selections

Two last things: 

While not music, one of my favorite poets, Mary Oliver, crafts words that sound like music and so I wanted to share an interview with her by Krista Tippets from On Being “Poetry for Tumultuous Times”.  It is a delightful interview and sure to warm your heart. 

When you load the page, you have to scroll down a bit and find the interview with Ms. Oliver.

Interview with Krista Tippets at: onbeing.org

Poem

And another poem to end with, and blessings to all…

For the Interim Time 

When near the end of day, life has drained
Out of light, and it is too soon
For the mind of night to have darkened things,

No place looks like itself, loss of outline
Makes everything look strangely in-between,
Unsure of what has been, or what might come.

In this wan light, even trees seem groundless.
In a while it will be night, but nothing
Here seems TO believe the relief of dark.

You are in this time of the interim
Where everything seems withheld.

The path you took to get here has washed out;
The way forward is still concealed from you.

“The old is not old enough to have died away
The new is still too young to be born.”

 

You cannot lay claim to anything;
In this place of dusk,
Your eyes are blurred;
And there is no mirror.

Everyone else has lost sight of your heart
And you can see nowhere to put your trust;
You know you have to make your own way through.

As far as you can, hold your confidence.
Do not allow your confusion to squander
This call which is loosening
Your roots in false ground,
That you might come free
From all you have outgrown.

What is being transfigured here is your mind,
And it is difficult and slow to become new.
The more faithfully you can endure here,
The more refined your heart will become
For your arrival in the new dawn.

From  To Bless the Space Between Us”  by John O’Donohue

The Path to a Good Death

This weekend, EOLCCA hosted our third Client Advocate Volunteer training in California.  It was a great day and we have some amazing new volunteers in our EOLCCA family.  Part of the training included sharing (anonymously) client stories with the trainees, and what attending a death looked like and felt like. It is always awe-inspiring for me to revisit those experiences.  

Over the ten years that I have been working with the dying, I have attended many planned deaths and each one is different.  Each person’s path to that good death is unique. Factors such as how family members feel, how the client feels about dying, cultural and religious norms, support by their medical team all come into play that day; one very important day for the client. 

It’s interesting to me that the path to a good death is a path we can plan for with our loved ones, choose for, hope for or be fearful of, though when we get to that final last step of dying, we do it alone.  All of us will die some day as it is part of the human condition. All of us will take that last step into death, and very few people have been able to take it and return, to tell us what it is like. It is an emotional, spiritual and physical journey.

We, at EOLCCA, have been honored to be present at many of these planned deaths.  

Just to mention a few: one woman died gazing out her floor-to-ceiling  windows at the forest, with her young granddaughter lying next to her holding her hand; one woman who spent her childhood in Hawaii died in a temporary living situation with her sister and me by her side, holding her hands, playing Hawaiian music and singing to her; one gentleman chose to die in a hotel room overlooking the ocean with his wife and friends there, after having a last drink of his favorite bourbon and having the opportunity to say goodbye; one woman died surrounded by her three adult children telling funny stories of their childhood, rubbing her feet and reassuring her that all would be well.  And then there was the family who lived far away from any of us or our volunteers, and we were only able to support them by phone. They were frightened of being the ones to prepare the medication for their father, who was very sure he was ready to die and whose physician had agreed and provided the lethal prescription for him. We were able to provide information and personal support to those grown children who found the courage to do this loving thing for their dad by providing him with his final wish for a peaceful death. They were so grateful for our support.

These are but a few of the amazing people and families who have crossed our path.  It is such an honor when their path of choosing a planned death with medical aid in dying crosses our path of being able to provide information and personal support, free of charge and with no agenda, to anyone who needs our help. I am continually struck by what a gift this is for them, and for us.  

As we continue to grow and train volunteers and meet the needs of more clients, we realize as an organization that we need help and cannot do it alone.  We know there is great need in the world for help for all kinds of situations and organizations, and we also know there is an important election happening this year.  However, if you have a few dollars to spare, and wish to support us in our work, we would be grateful to receive them so we can continue. And so that we can be there for you and your family when it is your time to walk that path and take that final step.

 

End of Life Choices California offers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visit www.endoflifechoicesca.org to answer a variety of questions.  To speak with one of our volunteers, please call 760-636-8009.  All our services are free of charge.

If you would like to support the mission of End of Life Choices California,
please click below and learn more about our funding needs.
Thank you!

EOLCCA 2020 Hope and Vision

We have been thinking about how we want to grow in 2020 and are working to clarify our vision for the coming year. But, sometimes it helps to look back to where we have been and where we are now in order to look ahead. In doing so, we surprised even ourselves by how much EOLCCA has accomplished since its inception in February 2019. We wanted to share that with you: our friends, clients, and supporters. It has been a whirlwind year.

In ten short months, we have accomplished a LOT.  As an all-volunteer organization run pro-bono by the founders, we have already achieved several exciting milestones.  We started on a shoestring budget and to date have successfully raised $45,000 with the help of a major gift of $10,000, as well as donations from other kind and generous people who believe in our mission.

Those initial dollars enabled us to begin building critical infrastructure.  We,

  • obtained our official IRS 501(c)(3) nonprofit designation
  • created and are maintaining a welcoming, resource-rich website 
  • purchased essential data management software, insurance, and phone line
  • marketed our services and created a social media presence with Facebook postings, modest promotions and regular blog posts on the website 
  • developed curriculum for and hosted two volunteer training sessions (Los Angeles and San Francisco) to start building a strong and committed core of Client Advocate Volunteers.

Since we launched our website in May, we have become a virtual clearinghouse on Medical Aid in Dying (MAID) in California.  The initial ramp-up phase has manifested a steadily growing stream of phone calls and email requests for information from the general public as well as health care professionals.

To date, 38 individuals and their families throughout the state became our clients seeking MAID, 12 have died at the time and place of their choosing using a MAID prescription, and several other clients are in the process of concluding the 15-day waiting period and planning to ingest.  We have been honored to be a supportive presence at the majority of these planned deaths.  

Our volunteers have also given 28 community-based presentations, participated in a groundbreaking End of Life Symposium organized by LA’s City of Hope Cancer Center in Duarte CA, and provided seven in-services for hospices and their physicians in the San Diego, Los Angeles and San Francisco Bay areas.  We have discovered ten more physicians who are willing and have prescribed MAID whom we can now connect to clients who are having trouble finding a participating physician. We have also published 27 blogs and thought pieces and garnered more than 250 followers. And, the list continues to grow.   

Whew!  All that said, our vision for 2020 remains steadfastly the same. It is our intention to continue providing all programs and services on a volunteer basis and at no charge so they are accessible to anyone who wants or needs them. Our hope is that this year we will gain the ability to hire a Program Coordinator to support to our Client Advocate Volunteer program and our Management Team. This will ensure we can keep things running smoothly as we continue to grow.    

We hope you can continue to support us with good thoughts, cheering from the sidelines, and financial support if you are able.  This will enable us to launch our next phase of growth so that EOLCCA can reach out to and educate more Californians about all legal end of life options including the California End of Life Option Act.

All the best to you and yours for a peaceful and deeply satisfying 2020.

End of Life Choices California offers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visit www.endoflifechoicesca.org to answer a variety of questions.  To speak with one of our volunteers, please call 760-636-8009.  All our services are free of charge.

If you would like to support the mission of End of Life Choices California,
please click below and learn more about our funding needs.
Thank you!

Physician-Assisted Suicide…. Not!

Every day my Google Alerts send me interesting articles about death and dying.  Some I read, some I pass by, but this one caught my eye. A medical student wrote a piece about the medical practice of “physician-assisted suicide” as a collaborative process.  While he said some interesting and powerful things, I was deeply compelled to provide information to him, and to his readers on kevinmd.com that the term “physician-assisted suicide” is incorrect. 

The following is my response to his article:

“I applaud Mr. La, an aspiring medical professional, for shining a light on medical aid in dying (MAID) in his recent article “Physician Assisted Suicide is a Collaborative Process”.  As he points out, MAID is becoming more available as states are increasingly legalizing the process. It is, in fact, a growing movement in our country that offers a humane and dignified death to those people in permissive states who are terminally ill, suffering, and wish to have a say in how they die. However, having attended many deaths as a volunteer with End of Life Choices California, and as a retired physician, I can attest that these individuals are clearly not suicidal, which we know to be a mental health issue where someone is choosing to die who could otherwise live. These brave people who choose medical aid in dying would give anything to keep living, but a debilitating, painful and terminal disease is taking their lives. They are simply choosing to end that life in a quiet and peaceful way, usually at home, surrounded by loved ones.  

Mr. La’s unfortunate use of “physician-assisted suicide” is outdated verbiage that is primarily used by people who are opposed to MAID.  However, I do not believe that he is taking a stance in opposition to MAID in his article nor condoning the practice as suicide. The laws that have been passed in each state are all very clear on this very issue.

For example, in my home state of California, the End of Life Option Act, Assembly Bill 15, is very clear that medical aid in dying is NOT suicide, euthanasia or any other term that blames the patient.  Medical aid in dying is a determined and seriously considered choice, with significant steps and oversight which must be applied to keep the law from being abused. The bill states that “nothing in its provisions is to be construed to authorize ending a patient’s life by lethal injection, mercy killing, or active euthanasia, and would provide that, action taken in accordance with the act shall not constitute, among other things, suicide or homicide.”

Another critical point to note is that pursuant to Section 443.18 of the bill, “death resulting from the self-administration of an aid-in-dying drug is not suicide, and therefore health and insurance coverage shall not be exempted on that basis.” Section 443.18 goes on to say “Nothing in this part may be construed to authorize a physician or any other person to end an individual’s life by lethal injection, mercy killing, or active euthanasia. Actions taken in accordance with this part shall not, for any purposes, constitute suicide, assisted suicide, homicide, or elder abuse under the law.”

If interested, one can read the specifics of the law here.

While we at End of Life Choices California will always defend the terminology of medical aid in dying in this way, another larger, national advocacy organization committed to improving care at the end of life, Compassion & Choices, is also very clear on the point of suicide vs. medical aid in dying.  Their accurate opinion can be read here: https://compassionandchoices.org/about-us/medical-aid-dying-not-assisted-suicide/

It is our hope, as a California nonprofit committed to providing information and personal support to people seeking answers at the end of their lives, that physicians will continue to educate themselves and become more willing to provide this important medical service to their patients at one of the most significant times of their lives. I believe it is the ultimate in patient abandonment not to do so.  If you are a physician wishing to learn more about MAID, please contact us at info@endoflifechoicesca.org and we will put you in contact with physicians who do prescribe MAID and would be happy to share their experience. 

Dr. Judy Neall Epstein
Founding Director, President
End of Life Choices California

                                                                                                      —

End of Life Choices California offers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California.  Please visit www.endoflifechoicesca.org.  To speak with one of our volunteers, please call 760-636-8009 or email us at info@endoflifechoicesca.org.  All our services are free of charge.

If you would like to support the mission of
End of Life Choices California,
please click below and learn more about
our funding needs.   
Thank you!