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.
I thought the book was touching, for sure, but I was surprised that she didn’t seem to know about the services of Final Exit Network. To my knowledge, it is the only right-to-die organization in the United States that will work with people who want to end their lives because of impending dementia. She alluded to some things about the internet, but never mentioned the organization. While it might not be the right choice for all, it does offer support to those with dementia if they apply while they still have agency and the ability to carry out the process themselves. VSED is also a possibility, but a person needs very good medical support to carry that out and strong determination, which might be compromised by cognitive losses.
Interesting how we look at death in our society. Our government spends billions (trillions?) in making and maintaining weapons of mass destruction which will kill multitudes at the push of a button. Yet, we shy away from assisting people to make a painless dignified transition. As if death was just a terrible inconvenience.
Judy, you mentioned in your article that “other end-of-life choices” are outlined on the End of Life Choices website. I’m curious why the website doesn’t include in that list the Final Exit Network, which has been active for many years in the United States.
Thank you for your comment and interest. We are always reevaluating our website resources and information and will take your suggestion into consideration.
I agree that Bloom’s book is beautifully written and full of achingly tender moments. I’d like to add one more book to your pile, one that directly addresses medical aid in dying in the US: “Walking Him Home: Helping My Husband Die with Dignity.” It’s being published August 9 by She Writes Press. You can learn more about it on Amazon, or contact me directly for an advance reader copy.
Thanks for letting us know about the new book!