In-person presentation by End of Life Choices California
Important topics to be covered include an update on the California End of Life Option Act, issues and concerns regarding medical aid in dying, and opportunities to improve support to hospice patients wishing to utilize medical aid in dying. Presenters will include Lynne Calkins and Judy Schnack from EOLCCA. For more information, contact Ms Calkins at 760-632-8029
This informative, in-person presentation by Lynne Calkins, a Founding Director of EOLCCA, will introduce you to the services provided by this organization whose goal is to help ensure that people are able to receive the information and support they need to advocate for and experience the death they wish. Key topics will include the California End of Life Option Act; as well as all the legal options one has to make an informed decision at the end of life–including, but not limited to, medical aid in dying (MAiD).
For additional information regarding the presentation, please contact Lynne Calkins at 760-632-8029.
This presentation by Lynne Calkins, BA, CRNP of EOLCCA will cover the full range of legal end of life choices to include medical aid in dying. This in-person event is for members of the Casa de Manaña community and not open to the public.
I often receive requests to read and review books. As a result, I have quite a pile of books on my nightstand. And as an avid reader, this is a lovely problem to have. Amy Bloom’s book, In Love, came to me through a different channel. One of our esteemed board members, Fran Johns, recently wrote a commentary of the book that was published in March 2022. I read it, it piqued my interest, and I got the book.
Interestingly, I had just finished reading Still Alice, by Lisa Genova, and then watched the movie again. It had been a few years since I’d seen it and wanted to watch it after reading the book. An excellent story. So my brain was primed for Alzheimer’s disease (not literally!) when In Love landed on my nightstand.
Few Available Choices
I have been interested in, concerned about, and curious about Alzheimer’s disease for decades. When I was in private family practice many years ago, I walked that path with quite a few patients and no matter what anyone tried, we really could only provide comfort care. Still Alice and In Love both depict the almost unbelievable devastation of Alzheimer’s disease. Not only to the patient, but to the family as well.
I thought Amy Bloom did a heart-wrenching job of sharing the experience of watching her beloved start to show early signs of the disease, becoming aware of the probability of the disease even before diagnosis, and finally accepting a clear understanding of what was happening and had been happening for years. She and her husband, Brian, were very brave as they confronted the issues and choices available to them based on their preferences and values.
Threading the Needle
I loved how personal the book is. I ached for them as they made plans, and then more plans, for Brian to find his peaceful death. I felt sad that they were unable to find that peaceful death in their own home and had to go to Switzerland to find medical aid in dying for early Alzheimer’s disease. As someone who has worked in the field of end-of-life care for over ten years now, it was still shocking to me to read her words about how poorly the US has constructed any kind of system for compassionate end-of-life choice. Yes, some states have medical aid in dying laws that allow physicians to legally prescribe medication to end a life. And people in those states are grateful for the choice.
But, as Amy Bloom said, accessing those laws is like ‘threading the needle”. Only a very specific cohort of patients are able to meet the requirements to access the law. A person must a) be mentally capable and understand the ramifications of the choice, b) be an adult and have a terminal diagnosis (life expectancy of less than six months) made by two physicians, and c) be able to self-administer the drugs.
Walking Through This Process
Of course, many people, particularly those with terminal cancer, are able to access the law under these parameters with relative ease. They still, however, need to find a doctor who will prescribe the medication. Many people don’t, or can’t, find a physician to prescribe because they live in a rural area, or their own doctor either doesn’t know how to prescribe or doesn’t want to. The law allows for that. I am grateful to be part of EOLCCA as we continue to help people, at no charge, to walk through this process and overcome barriers they might run into. You can read about our services here.
For those who are not eligible for medical aid-in-dying and don’t wish to go to Switzerland, there are other end-of-life choices. We outline them here on our website and discuss these with clients all the time. One of those choices that people find most interesting is Voluntary Stopping Eating & Drinking (VSED), though it is not everyone’s cup of tea, as Amy Bloom discussed. This is totally understandable. However, we have supported many people through VSED and with adequate support and understanding, it is often a very approachable way of embracing nature’s authentic way of dying. It is seen in many cultures and in the animal kingdom as well. For some comprehensive resources on VSED, click here.
I applaud Amy Bloom’s courage in supporting her husband’s wishes to leave this world in his own way, in his own time. What a beautiful gift she gave him with that support. And what a beautiful gift to us all with this lovely book. Thank you.
End of Life Choices California is a 501(c)(3) nonprofit organization that provides its services of support and information at no charge to our clients. If you would like to support our work, you can do so easily by clicking here. We are grateful for all gifts, large and small.
Please keep an eye out for next month’s blog post by one of our volunteers about dementia and the Dementia Directive.
When I read The Washington Post article’s title, “At 94, she was ready to die by fasting,” I thought “Oh no!” Upon further reading, I learned that Rosemary Bowen did not actually fast, which by definition is stopping all nutritional intake, but rather, she voluntarily stopped eating and drinking, also known as VSED, to achieve her death. That made absolute sense to me.
There is no law that says you have to eat and drink.
VSED has been discussed for decades within the right-to-die movement. It is a legal option for anyone, anywhere. There is no law that states you have to eat and drink and on the flip side, no law states that you can’t stop eating and drinking if and when you are ready and have appropriate support. In fact, in states that have adopted Medical Aid in Dying, there are many people who don’t qualify for the law with a terminal illness, thus VSED is a viable option for them to consider. It also continues to be an option for people in states without such a law, should they come to that very personal conclusion that the burden of living has become greater than its benefits.
I thought Rosemary Bowen’s was a perfect example of a graceful death through VSED. I’m glad her daughter found it in her heart to support her mother’s choice, to film her, and then publish it in order to share her mother’s experience. As a society, we need more opportunities to talk about death and where possible, how one chooses to die.
Unfortunately, Voluntary Stopping Eating and Drinking is often misunderstood. One thing we know for sure, which gives me comfort, is that this is a natural process in the animal kingdom and in some cultures. When it becomes apparent that an individual can no longer participate with the pack, they go off quietly by themselves to die by stopping food and water. Knowing that this has occurred naturally for millenia makes the choice easier to understand.
I recently spoke with an elderly and ill gentleman who had reached the conclusion that he was ready to die. He had stopped eating a month ago. He had lost quite a bit of weight and was angry that he was still alive. When I suggested he consider stopping all fluids as well, based on my understanding of VSED, he expressed fear that it would be painful. While he was not taking in any food at all, he stated he was finding comfort in drinking water. I explained to him the physiology of stopping both food and water: that the body could last for a very long time with no food (with that length of time being dependent on the amount of fat and muscle mass available to make energy) but with fluids stopped, the body would go into a severe dehydration state which would cause kidney failure and lead to cardiac failure in a matter of days to a couple of weeks.
Is VSED painful?
People worry that it will be uncomfortable and painful. And, in my experience of seeing people go through this process many times, it can be somewhat uncomfortable. Knowing that, we always recommend that individuals choosing VSED engage Hospice as soon as possible and also have supportive family and/or friends present 24/7 once they start the process. Hospice will provide comfort measures with oral mouth care and ways of administering palliative medication other than orally, so no fluids are necessary to take pills. The Washington Postarticle discusses this.
This way of leaving the world is not for everyone. It takes a great deal of conviction and fortitude. One must be absolutely certain this is what he/she wants to do. The discomfort of thirst is strongest in the first three days, I’ve noticed. Then the person moves into a more dream-like state and the discomfort becomes secondary. Again, hospice support with body care and soothing medication is essential. NO ONE SHOULD EVER DO THIS ALONE. People alone and on their own have gotten up and fallen due to weakness, and often ended up in the hospital with a fracture and on IV fluids, thus VSED could not be completed. It is imperative to have adequate support.
EOLCCA’s volunteers are trained to know how to walk people through the steps of preparing for VSED and accomplishing it successfully. We are available to talk with anyone who is interested in exploring the option. Lastly, if you would like more information about VSED from a scholarly perspective, visit our website’s Resources page here.
End of Life Choices Californiaoffers information and non-judgemental personal support to anyone seeking help managing end-of-life care planning or decision-making in California. Please visitwww.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.
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