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In Love, A Memoir of Love and Loss

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.

 

In Love, A Memoir of Love and Loss, book cover
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 the Burdens of Living Outweigh the Benefits

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.

Understanding VSED

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.

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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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When You Don’t Have Access to Medical Aid in Dying…

As of Tuesday, August 27, an appeals court in New Jersey overturned the restraining order mentioned in this post, which halted New Jersey’s “Aid in Dying” law, now making it lawful for terminally ill individuals to request a prescription from their physician to end their lives.  This is great news!

This post, originally written with New Jersey’s law still in limbo, presents pertinent information regarding another end-of-life option for a peaceful death, should medical aid in dying either not be available or the 15-day wait process not be realistic.  

This news story was posted on August 23, 2019 and is a very sad, but important, read.  It explains why having access to life-ending medication for an individual with a terminal disease needs to be a viable, accessible option for all decisionally capable adults.  It is so sad that this woman in New Jersey, where a death with dignity law was just passed, cannot fulfill her wish to obtain the medication promised to her by her physician, in accordance with the new law, because one person is contesting the law and it is now “on hold” until it goes through the legal process.  

I wish End of Life Choices California could reach across the country and help her.  Perhaps this blog will find it’s way to her and her husband.  Because the truth is, there is more than one way to achieve a lawful, peaceful death in the face of an agonizing and incurable illness.  If Katie were in California and called us, one of our trained volunteers would meet with her and her husband to discuss her situation and all legal end-of-life-options.  We would explain that without medical aid in dying available, she might want to know more about using Voluntarily Stopping Eating and Drinking (VSED) as an option. Many people shrink back from this idea often because of a misunderstanding about the actual process and what it entails, even though it can result in a peaceful death.

Voluntarily stopping eating and drinking is the legal right of any person anywhere. There is no law that states you have to eat and drink fluids to stay alive.  That being said, it is absolutely NOT for everyone. And the best scenario of its use is for those unfortunate people who have arrived at a place in their lives where they find that the burdens of living with a terminal or painful disease far outweigh the benefits of living: when they have lost all control over their life, are suffering from intractable pain and know there is no hope of recovery.  

 It takes a strong and dedicated decision by an adult to choose to stop ALL food and ALL fluids.  It is not starving oneself to death. It is stopping all forms of nourishment, including water and other fluids, that pushes the body into a dehydrated state that leads to the kidneys shutting down and results in a coma and death.  Depending on the strength of the person and the strength of their heart, it can take from five days to three weeks. Some people have described an almost euphoric state in going through this process. In a person weakened by disease, basically bed-bound and already at a much lower weight than is usual for them due to their  illness, it is a shorter rather than longer process. But they have to be determined through the early symptoms of hunger and thirst which eventually pass.

At End of Life Choices California, when supporting a person choosing VSED, we always suggest the person and their caregiving team have their physician on board to prescribe hospice care for them if they are not already on hospice.  A person pursuing VSED can benefit from medical support with gentle anti-anxiety medication and other clinical practices to ease their symptoms, and hospice nurses are excellent in providing oral care to alleviate dry mouth and lips.  A simple swab of coconut or some other oil does the trick. Quiet favorite music, aromatherapy, massage and careful medical support all can contribute to achieving a peaceful death. 

Even though the California End of Life Option Act has made medical aid in dying available to terminally ill, decisionally capable adults, not all those individuals who wish to obtain it will be able to or they may run out of time trying to find doctors who will participate in their medical wishes.  At End of Life Choices California, we discuss all end-of-life options with our clients, as well as support them in their effort to access medical aid in dying or VSED even when the barriers seem overwhelming. We provide factual information and personal support.  You can find many resources and learn more about our services on our website.  If you are interested in learning more about VSED, feel free to give us a call, or go to this page on our website and read more.