Lavender Seniors of the East Bay

Facing Difficult “End of Life” Decisions

Many of us have watched our parents, grandparents, aunts, uncles, other family members and friends face difficult “end of life” decisions. Some of them have experienced protracted bouts of illness (e.g., Alzheimer’s, Parkinson’s, Cancer, Stroke, Heart, Kidney or Liver Disease); others have had a sudden death while shoveling snow or a peaceful death in their sleep. And there are examples of everything in between. Though we may know intellectually that all of us will pass on one day, none of us knows how or when. Californians approaching the end of life – no matter how old they are – now have some options to consider.

In 2016, California followed the lead of its progressive neighbor to the north and passed the End of Life Options Act, effective June 9th that year, making it the fifth state in the country to adopt such legislation. There are now 11 states and jurisdictions in the U.S. that support medical aid in dying. This Act was renewed and enhanced earlier this year. Knowing what options might be available through this Act – including the potential for medically-assisted death – may be worth learning about. The Act empowers a person to choose a death with dignity.

For the Third Friday Lunch Bunch on 19th August, we will have a well-versed team of experts on this subject making a presentation to us after our check-ins.

  • Stewart Florsheim, Board Member, End of Life Choices California
  • Ann Gordon, Practice Leader, End of Life Option Program, Kaiser Permanente, NCal

They will help us answer at least the following questions, plus be available for a robust Q&A session after their presentation.

  • What does the act cover and how has it changed this year?
  • What are the other legal options available in California at the end of life?

For more Information, please contact:  Dr. John David Dupree, Secretary at JohnDavid@LavenderSeniors.org

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.