Some of my advocacy collaboration with Compassion & Choices, “an organization dedicated to improving care, expanding options and empowering everyone to chart their end-of-life journey,” was recently published in an article in the San Francisco Chronicle:
Cancer, blindness and Parkinson’s changed how I think about death. It’s a door I want to open when ready.
When my time comes, I want to experience my death as yet another dimension of human life. Current state law gives me that option
I’ve since come to understand my environment more comprehensively, listening more intently to bird songs, the sounds of traffic and the tenor of people’s voices as they speak. I’ve continued to write, even as the process of translating what’s going on inside my head into the written word looks different now.
I’ve also realized that at the end of my life, I want to be able to face my death head-on. I don’t want to be out of my mind on pain medication, being kept artificially “alive” in a hospital. If one of my illnesses becomes terminal, I want to be able to call on my wife, my children and other loved ones and say, “Come join me for a goodbye session.” I want to be as present for that final moment as I am for every other day of my life.
If I need it, California’s medical-aid-in-dying law, the End of Life Option Act, would allow me to obtain prescription medication that I could take to peacefully end my suffering, if it becomes unbearable, in my sleep, at home, in my bed, surrounded by my loved ones. Knowing that this option exists where I live gives me great comfort and peace.
But it may soon no longer be available to me or any Californian.
In April, a coalition of disability groups filed a federal lawsuit claiming that the recently updated act makes it more likely for people with disabilities and communities of color to use life-ending drugs than the rest of the population because they are less likely to receive proper medical and mental health care. The plaintiffs also argue that these vulnerable populations could be coerced into taking their own lives by family members or caregivers.
The data doesn’t support them.
According to a July 2022 report from the California Department of Public Health, only about 13% of the terminally ill individuals who have utilized California’s End of Life Option Act since it took effect in 2016 were from communities of color. Moreover, a 2022 study examining “the most common arguments against legalizing assisted dying” concluded, “There is no evidence that assisted dying laws have bad effects on other aspects of healthcare for people with disabilities. In fact, there is evidence that legalization goes hand in hand with increased support for palliative care.” And as Assembly Member Jim Wood (D-Ukiah) noted in September 2021, “There have been no reported cases or instances of abuse or coercion.”
According to an attorney for the plaintiffs, they were looking for a way to challenge the law and settled on the recent update because it removed some safeguards in the original law. The revisions reduce the minimum waiting period between the two oral requests patients must make for medication from 15 days to 48 hours and they eliminate the requirement for patients to make a written attestation within 48 hours before taking life-ending medication.
Why did lawmakers make those changes? Because those stipulations have been significant barriers for terminally ill patients seeking aid in dying. A 2017 study of the first year the law took effect found that 21% of people died or became too ill to complete the 15-day waiting period. And contrary to what the plaintiffs of this lawsuit would have you believe, numerous safeguards still remain in the law.
Let’s be clear: This lawsuit isn’t about protecting the rights of vulnerable populations. It’s an attempt to eliminate a health care option that the plaintiffs would not personally choose.
As someone with a disability and a serious illness that could become terminal, I find it insulting that disability groups claim to speak on my behalf and describe people like me as being unable to make independent decisions about end-of-life care. I have thought carefully through my decisions for what I want for end-of-life care and my decisions should be my own. I’m not alone in this belief. A November 2021 poll showed 68% of likely voters nationwide support medical aid in dying as an end-of-life care option. The opinion holds among people with disabilities as well — a February 2023 national poll shows 79% of likely voters with a disability support medical aid in dying.
I like to think of death as just another door I haven’t opened yet. When my time comes, I want to step through that door and experience my death as yet another dimension of human life. The California medical-aid-in-dying law as it stands now gives me that option, so I pray it remains intact when I reach death’s door, as we all will one day.
Charles Entrekin lives with his wife, Gail, in Orinda.
Comments in the SF Chronicle.