I don’t mean that I saw the bright light at the end of the tunnel and came back to the big metal table.
I’m not writing about my childhood dog, Brandy.I’m not referring to my first funeral.
I mean the woman in her 70’s who took her last breath with me by her side. Voluntarily.
She chose to use Medical Aid in Dying
A couple of days before we entered shelter-at-home because of the global coronavirus pandemic, I sat with an End of Life Choices California (EOLCCA) client who chose to use MAID (Medical Aid in Dying) to end her suffering and end her life. And although I tossed the idea around of waiting for a better time to write and publish this blog post, I realized there couldn’t be a better time. In these days of pandemic, when folks normally might shy away from the conversation, the very topic of death is on everyone’s mind. The statistics will become names and someone you know will possibly die.
He would joke about calling Dr. Kevorkian
I have a large family and was exposed to death at a very early age with many traditional Catholic funeral masses for grandparents, aunts, uncles, cousins, and Mom and Dad. My mother died when I was 8 years old from lung cancer and my father died of ALS in 1993, when I was 22 years old. There is no cure for ALS and it is fatal, with most patients dying between 2 -5 years of diagnosis. Dad would joke about calling Dr. Jack Kevorkian, the doctor who assisted people with acute medical conditions to end their lives. But you also might remember that Dr. Kevorkian was in and out of trouble with the law during those years so it was really just a fleeting thought, more of a joke that Dad would use to make light of the heavy situation. Would he have actually gone through with something like that if it had been a legal option? I will never know the answer, but I’m sure the choice would have been comforting as his body and quality of life completely deteriorated while his mind was perfectly intact.She was declining
Our client “Annie” was diagnosed with terminal cancer and suffering from severe heart issues. Her leukemia had already caused her to go blind. She loved reading. She was well-educated, smart, sharp and witty. When her vision had deteriorated to a point where she couldn’t read anymore, she donated bins and bins of her books. She couldn’t eat the food she loved anymore. She was struggling with moving around her two-story condo. She was having restless nights while trying to sleep. She was physically uncomfortable and declining. So she reached out to End of Life Choices California to ask if we had volunteers who could support her and be with her the day she chose to take her life-ending medication. When my Client Advocate Volunteer team leader asked me to be a part of this case, I was anxious and nervous. I’d never been in the same room with someone as they actually died. I’ve touched many cold hands during open casket wakes, but never said goodbye to someone or sat with them while they transitioned. I didn’t know what to expect. Will she actually go through with it? What if she changes her mind? How long will it take? Research tells us the time to death can be 30 mins or 10 hours. What will her body do? Will she twitch? Will she make noise? Was she scared?Her suffering was over
We had an hour to sit with her between the anti-nausea medicine and the final medication that would put her to sleep and ultimately put her into a coma followed by death….so we asked her some questions. What was she most proud of? Did she have any regrets? These are the types of questions that I have longed to ask my parents…if I could just have had a little bit more time with them. Annie had funny answers, and we laughed and joked with her about the stories of her childhood. Then we helped her get into bed. She had her playlist going on her iPod, the window open and the rainy breeze floating in. As Annie quickly fell into the deepest sleep she will ever have, I saw beauty in her death. The edginess I had been feeling turned to numbness. And then relief. Her suffering was over.
I often become obsessed with getting people’s stories on camera and am constantly photographing and recording everything around me. When I meet someone like Annie, I am sad that the stories she told us will just be molecules that fall to the ground…and then I remember that Annie’s journey is not my journey. However, Annie’s ability to choose her ending is a right I will continue to fight for, in honor of my Dad.
The author’s mother enrolled her in oil painting classes very early on to encourage her artistry. She painted this clown when she was just six. It reflects the appreciation for clowns she learned she shared with Annie.
I was given the gift of courage and creativity by my parents and I will continue to share what I find beautiful around me. It might be a photo of a flower, a beautiful dish I cooked, or a funny interview with a 6-year-old.
Life and death are both beautiful. And when you face death, you begin to see more of the beauty in life.
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Laura De Merchant, an accomplished photographer, observer and recorder of life journeys, serves as a Client Advocate Volunteer for End of Life Choices California in the San Diego area. Once life becomes normalized again with the pandemic behind us, Laura and her fellow volunteers will again be able to visit with our clients in person and support them in obtaining MAID and determining the care they want during their end of life journey. Our volunteers are also eager to speak to community groups interested in learning about the California End of Life Option Act, Medical Aid in Dying (MAID), preparing an Advance Health Directive,and finding comfortable ways to begin such conversations with one’s health care providers and loved ones. Please go to our website to learn more about our services or call 760-636-8009 to speak to a volunteer.
Thank you for your story and contribution to all of our lives. Choosing how we want to die enhances my life. Conversations about death have helped me to fully appreciate and engage my life.
I am currently working on a dramatic film, LAST DANCE about a couple who couldn’t use medical aid in dying, because the husband had early-mid onset Alzheimer’s and unfortunately, none of the states with death with dignity laws include people with degenerative diseases like Alzheimer’s, Parkinson’s, etc. He chose to Voluntarily Stop Eating and Drinking (VSED).
We’d love to hear any stories of people who VSED. Blessings and thank you.
Hi Larry, Please share your contact information in the comments, so that people can connect directly with you. I hope you will keep us posted on your progress with LAST DANCE. It is a project that can hopefully reach a broad audience regarding VSED in the context of current Death with Dignity laws that do not address degenerative diseases with far longer trajectories than 6 months. Thank you very much.
Very cool, Larry! If I hear of anyone willing to share, I will send them your way. Thanks for reading and taking the time to comment. – Laura
Love to hear any VSED stories. Please contact me at larrysagen@gmail.com
A lovely story, beautifully told. Thanks, Laura!
Thank you, Fran! -Laura
Thank you Laura for sharing about Annie, yourself, and the experience that will forever bind you two together, so wonderfully written!
Thank you, Paula!
Claudia Comins, I was interested in your comment, “It is a project that can hopefully reach a broad audience regarding VSED in the context of current Death with Dignity laws that do not address degenerative diseases with far longer trajectories than 6 months.” I have stage IV breast cancer and have been taking some very good drugs for over four years. I don’t think there is a general knowledge that late-stage cancer can also have a trajectory longer than six months. I don’t think I am as afraid of the last six months as I am of the time leading up to that last six months. You have to suffer to some degree to get there. That is my fear and that of many cancer patients today. Yes, we should be glad there are these drugs and that we live longer but we spend so much time waiting due to the uncertainty of the medical situation with cancer. I know. I shouldn’t be complaining but modern medicine sometimes makes things difficult. I’ve been thinking about this issue for a while and saw this opportunity to express it to some people who might understand.
Janet, Thank you for your comment.