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Major Improvements to the End of Life Option Act

EOLCCA is thrilled to share the long-awaited news that yesterday, October 5, Governor Gavin Newsom signed Senate Bill 380.  This new law makes some badly needed adjustments to the existing End of Life Option Act in California, which was signed into law exactly 6 years ago on that very date by then Governor Jerry Brown.

These new provisions will become effective on January 1, 2022. Here is what will be different for anyone seeking Medical Aid in Dying in California in less than three months from now.

  • The new bill reduces the onerous 15-day waiting period between the required two oral requests, to 48 hours.  This is a big change and will help many people access the law who couldn’t previously.
  • Healthcare systems and hospices will now have to post their aid-in-dying policies on their websites. This will be extremely helpful in guiding people as to where they choose to receive their healthcare, especially if they are very sick or terminally ill and wish to request medical aid in dying.
  • The final attestation form will be completely eliminated.  This was a document that the patient was expected to fill out and sign within 48 hours prior to taking aid-in-dying medication.
  • If a terminally ill patient requests medical aid in dying and their physician does not wish to participate, the physician will be required to tell the patient they will not support them.  AND, the physician must document the request in the patient’s medical record and transfer the patient’s medical records upon request.
  • The amendment also clarifies that medical aid in dying medication can be taken within a healthcare facility.

We applaud Senator Susan Eggman for her dedicated leadership on this important issue and all California lawmakers who voted for this new measure, as well as Governor Newsom for signing this amendment into law.

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.

Barriers Persist in California and Elsewhere

The barriers to using medical aid in dying remain so high that in one state, pharmacists are fighting back and helping terminally-ill individuals find physicians willing to help. 

We know this because of a recent Kaiser Health News story by JoNel Aleccia. Aleccia is the same reporter who covered the first article about the Colorado physician, Dr. Barbara Morris, who was fired last August 2019 by her employer, Centura Health Corp.  Centura, a Catholic and Seventh-Day Adventist-run health care system, fired Dr. Morris for agreeing to prescribe life-ending medication to her terminally-ill, End of Life Option Act eligible patient, Neil Mahoney. We highlighted that story in our September 3 blog Barriers to Medical Aid in Dying Even When it is Legal.  Not only did Dr. Morris lose her job, she lost care of her patient, her office, and her malpractice insurance.

Aleccia wanted to know what happened to the patient, Neil Mahoney?  What happened to Dr. Morris? She takes us to Golden, Colorado where Mahoney and Dr. Morris filed a lawsuit; the case is pending.  Due to his declining health, Mahoney had to leave the suit, but was able to gain access to his state’s medical aid-in-dying law thanks to a pharmacist who reached out to him as part of “a network that quietly connects terminally-ill patients in Colorado with doctors willing to follow the law”.  

This compassionate group is called Dying with Dignity of the Rockies, Aleccia informs us.  We know of at least two pharmacists in California who fill aid-in-dying prescriptions who have indicated they are only too happy to match patients with physicians they know are willing to help.  

As Colorado pharmacist Rodney Diffendaffer points out, there are many doctors willing to help, but they don’t want their names on a public list.  California physicians feel the same, and we understand and respect that. He also points out that it is the patient’s choice to have the aid-in-dying drugs; no one else should have a say. 

The lack of physicians willing to prescribe medical aid in dying due to pressure from employers is just one of the many barriers that persist in California as in Colorado and the other states.  This reluctance may be based on religious or moral reasons, or fear of being fired or of censure by their employers or colleagues. Whatever the reason, as Dr. Morris said, “medical-aid-in-dying should be part of a continuum of care for dying patients”.  We agree with her wholeheartedly.

By late September, and thanks to a Colorado physician who had prescribed MAID only once before, Neil Mahoney had his medication in hand. Neil expressed great relief.  Now he was back in control of his living while dying, and had many plans to make: who will care for his dog, his cat, and what about his other belongings, while planning how to say goodbye to friends and loved ones. Neil took his life-ending medication after he became more frail, but while still able to swallow, a requirement under the law.  He took his medication on the evening of November 5, surrounded by his large and supportive Catholic family. He fell into a deep sleep and died an hour later, peacefully, as was his wish. 

What about Dr. Morris?  Her suit is pending in the courts, and she has found another place to practice medicine. When notified of Neil’s peaceful death, she was grateful he had found a way to access the law while also regretful that the religious bias of her former employer had prevented her from helping him. She went on to say that as a memorial to Neil she, and physicians and pharmacists like her “will continue to advocate for care focused on patient values and wishes.”

The Colorado physician who prescribed medical aid in dying for Neil stated that it is her job to relieve pain and suffering and to inform her patients of all the choices in dying available to them. 

This continues to be the mission and work of End of Life Choices California: informing Californians of all their end of life choices.  If you would like to help us carry on this mission, please make a donation here or complete a volunteer application here – or do both!  We need volunteers well placed throughout this massive state of nearly 40,000,000 people. 

A special thank you to JoNel Aleccia for her factually correct, excellent reporting on this important issue!

 

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please click below and learn more about our funding needs.
Thank you!

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.