Revolution Hall, Portland, OR February 17-18, 2003
The American Clinicians Academy on Medical Aid in Dying and Death with Dignity are thrilled to announce the jointly-facilitated 2023 National Clinicians Conference on Medical Aid in Dying — February 17-18 in Portland, Oregon, at the wonderful Revolution Hall. (Usually reserved for rock concerts, but aren’t aid-in-dying clinicians rock stars?)
The incentive for the first, 2020, National Clinicians Conference on Medical Aid in Dying, originated from the pressing need for clinical discussions, explorations and evidence-based knowledge about aid in dying. With 10 states and Washington DC providing for the option of legally assisted deaths, some 22% of the U.S. population has gained access to medical aid in dying. It has become a significant end-of-life option. This has driven the need for increased evidence-based knowledge and clinical care — provided for the first time at the 2020 conference, now to be continued and updated at the 2023 two-day event.
There’s a lot we learned from the first conference in 2020. Clinicians were hungry for information about the direct care of patients considering medical aid in dying, and the conference more than fulfilled that hunger. Even more significant was the deeply emotional camaraderie between some 300 aid-in-dying clinicians gathered for the first time in one place at one time. We’d become so used to working in relative isolation in our medical communities that joining a crowd of deeply caring and committed colleagues literally brought some to tears. And the second day of the conference marked the birth of the Academy, to continue the work.
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?
The joy of growing up for me was to be on my own, make my own way, and be myself. Of course, accomplishing these goals is more than the compilation of many birthdays, and is often not easy. Yet multiple decades later, I now hold dear many values and viewpoints which make me–me! And the same is true for many of us, across all walks of human life. The opportunity to represent and guide your own life is an innate part of being yourself.
When Dementia Takes Hold
This treasured aspect of humanity is impacted when dementia develops and takes hold. Medical professionals often talk about Alzheimer’s disease (the most common form of dementia) being one of the most feared diseases because of this impact to “self”–self-representation and self-determination.
I witnessed this first-hand, watching my grandmother deteriorate from Alzheimer’s disease. Like too many others, the disease slowly but surely removed the ability for my grandmother to represent herself. She could no longer talk and had no capacity to express herself–her wishes, views, or needs. My grandmother passed away after years of 24×7 care in different nursing homes which kept her alive, but sadly were not informed to customize their care to her wishes and needs.
Representing Ourselves Now
While we do not yet have a way to fully avoid the future possibility of debilitating dementia, we do have the opportunity to communicate our own wishes, views, and needs. We can represent ourselves now. The following resources are ways to communicate to both loved ones and health care providers:
A health care directive for dementia
Developed by Dr. Barak Gaster via the dementia-directive.org and available for download from our site, this directive describes three levels or stages of dementia impact. For each stage, you may select from a set of three goals to communicate the type of care you would want to receive.
A letter added as an amendment to a general health care directive
Created by author Katy Butler, and shared via the Conversation Project organization, this letter can be used as-is, or as a template and modified per your wishes. It provides a thorough listing of specific guidance for various care and treatment options when one can no longer represent oneself.
A dementia directive or amendment serves to clearly inform loved ones and health care teams. And though currently neither is legally binding, those who are in a position to care for you will be enabled and encouraged to honor you by aligning future care to your views and wishes. Your own voice will be communicated and clear.
To read more about this topic, please visit our website.
Becky Oliver is a volunteer with EOLCCA. Her professional life has been spent as part of Silicon Valley’s tech industry. Outside of work, her personal passions include contributing to end-of-life causes, with a specific interest in the nature of care for the aging and those nearing end of life.
They say there are only two things we absolutely have to do: Die and pay Taxes. April 15 is traditionally Tax Day, and now the day after, April 16, has been designated National Healthcare Decisions Day, in an effort to get people to plan for their dying as well as they do for their taxes.
Elephant in the Room
Due to this pandemic year of hearing daily numbers of Covid deaths and constantly seeing scenes of people suffering and dying, we have a fresh awareness of death. This heightened awareness is actually helping us talk about death and prompting many families to discuss what they want their dying to look like. The “elephant in the room” (that thing that we are all thinking about, but not talking about), is actually being acknowledged much more now. It remains to be seen if 2021 will turn out to be the year more Americans than ever will have embarked on advance care planning and completed their advance directives (ADs).
What is important to you?
If you are serious about telling your loved ones what you would want at the end of life, we at End of Life Choices California (EOLCCA) are here to help you get the conversation going (the most important part) or show you where to find the appropriate forms and what to do with them. It’s what we do.
Ask yourself: What is most important to you? What matters most to you?
We are here to help you share with your loved ones exactly what you would want if you were unable to speak for yourself. Completing an AD is a “game changer” for you and your family; it is a gift, it is liberating.
Let’s bring that “elephant” out of the closet and shine a light on dying: Let’s admit that someday we are going to die, hopefully not soon, but that we 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 loved ones and write down what we would want in an AD. The sooner we do this, the more likely it is that our wishes will be honored.
Our family and friends will be grateful to have had the opportunity to help us achieve our goals.
Take these steps today!
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 your physician.
If you have any questions or would like help completing an AD, please email us at info@endoflifechoicesca.org and let us know how our volunteers can help you.
