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.

Grateful

Reading about New Mexico the other day, I was moved to deep gratitude that California found the wisdom and courage to enact an aid in dying law so its terminally ill citizens may have a peaceful death if that is their choice.

In this Albuquerque Journal editorial it is heartbreaking to see that two amazing people stepped forward, while suffering from their terminal diseases, to speak out for medical aid in dying. 

Bill Johnson, diagnosed with ALS, was not only a Roman Catholic (I only mention this because the Catholic Church unequivocally opposes medical aid in dying) but he was a former CEO of University of New Mexico Hospital and a former secretary of the state Human Services Department.  Quite a history for someone fighting for the right to end his life on his own terms with medical aid in dying.  

They died, but not on their own terms.

The other individual,  Elizabeth Whitefield, the 2nd Judicial District judge for whom an aid-in-dying bill was named but did NOT pass in New Mexico this spring, died last year.  Whitefield battled multiple cancers over many years. She rebounded time and again but knew chances were great she would succumb to cancer in the end, so she lobbied legislators to support compassionate end-of-life legislation in 2017.  She died, like Johnson, on lawmakers’ terms, not her own.

Don’t lose  hope.

I hope New Mexicans do not lose hope because of this loss, along with all the other states trying to pass medical aid in dying laws.  What I hear people who are opposed to medical aid in dying say is that they fear a slippery slope: that sick children, elderly people with no family, or the disabled with expensive medical needs will be “euthanized”.  But these fears are ludicrous and not based on any factual information. One can look to Oregon state to see that in 25 years with the Death with Dignity law this has never occurred. Euthanasia is not legal in the United States, and these state laws have very strict guidelines to prevent exactly this kind of abuse.  

I am grateful to have a choice.

What has happened however, not only in Oregon, but in California, Washington,  Montana, Colorado, Vermont, the District of Columbia, Hawaii, New Jersey and Maine is that people who are struggling with a terminal disease now HAVE THE CHOICE to determine how and when they will die.  No one is required to seek medical aid in dying if it does not reflect their own ethics, values or religious beliefs. The whole idea behind medical aid in dying legislation is to give people more humane choice at the end of life.  And I, for one, am grateful that were I facing a terminal or debilitating disease with a known trajectory of pain and suffering, this choice is available to me should I wish it as a citizen of California. 

As our esteemed former California Governor Jerry Brown stated when he signed the End of Life Option Act, 

“In the end, I was left to reflect on what I would want in the face of my own death. I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”

Thank you, Governor Brown. 

If you or someone you know is facing a serious or terminal illness and would like to discuss end of life options, or discuss Advance Care Planning, please contact EOLCCA. We have compassionate, educated volunteers who will talk with you and answer your questions.    

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!

How to Make Doctors Think About Death

An Opinion piece was recently was published in the New York Times by Theresa Brown entitled, How to Make Doctors Think About Death.  It was a great piece and right on target.  It discusses how often physicians are, out of habit, treating symptoms without seeing the big picture in a dying patient.  It can be difficult for the physician to admit s/he has run out of options and there’s nothing left to do.


Here is an excerpt from Ms. Brown’s Opinion:  

It made sense to switch him to “comfort measures”: to focus on alleviating his suffering rather than curing him.  It would also make sense to have general treatment guidelines for situations like this, guidelines to indicate when comfort, not cure, is most appropriate. But no such guidelines exist.”


The sad truth is that no such guidelines exist for physicians. However, guidelines do exist for patients!  The other sad truth is that most patients don’t know it. They follow suggestions and prescriptions and trials and more trials even in the face of their oncoming demise. Everyone wants to think the next great idea will be the one to pull the patient back from the brink of death into a life full of meaning and options again. This is rarely the case.

At End of Life Choices California, we believe in planning ahead for such a situation. In addition to the Advance Care Planning documents we have provided on our website,we also offer information and advice about how to specify exactly what you want and don’t want at end of life. We all need to be specific about our wishes, discuss them and write them down. EOLCCA is available to help individuals as well as provide information about advance care planning to community groups and other organizations.

We DO have options at the end of life. We do have choice. We just need to know about it.

Please take the time to educate yourself, talk with your physician, talk with your family.  It matters not whether you are young or old, sick or well. All adults should think about this and write down their preferences.  We will not live forever and none of us knows how the end will come. Every day is a gift, so be sure your loved ones know what your ending looks like, should it come as a surprise or as an expected outcome of disease.