Bonnie McKeegan: Wouldn’t you want to know?
My mother died of breast cancer in February 2018. She had tumors growing throughout her bones, liver, lungs and probably in her brain. Cancer is a horrific way to die, and sometimes even the best hospice care cannot manage a dying person’s suffering adequately, as was my mother’s experience.
Because of California’s End of Life Option Act, my mom was able to end her unbearable suffering and die comfortably in her sleep. My mother’s death story is punctuated by peacefulness because she had the option to use medical aid in dying. Without access to this compassionate law, her story would have ended with agony as the period to her adventurous life.
The law that allowed my mother to change her ending is set to expire unless we pass Senate Bill 380 to make the law permanent. This law’s sunset provision would result in the tragic death of an important end-of-life care option.
If you have a terminal illness and talked to your doctor about the full range of your end-of-life care options, including medical aid in dying, but your doctor didn’t tell you about the law, it’s likely that your doctor’s employer forbids it. The bill includes an amendment to fix this health injustice so that health-care systems can no longer censor crucial conversations with your health-care providers when you are dying.
California’s End of Life Option Act allows mentally capable, terminally ill adults to request a doctor’s prescription for medication they must be able to self-ingest to end their suffering if their dying process becomes a pain and suffering nightmare.
According to a 2019 survey by the California Health Care Foundation, 75 percent of Californians support California’s End of Life Option Act. This majority support spans the economic and racial spectrum: Asians/Pacific islanders, Blacks, Latinos, and whites.
Medical aid-in-dying laws in nine states and Washington, D.C., have decades of practice and evidence establishing these laws are safe. However, in California, the law can still be difficult or impossible to access for many patients who could benefit just by knowing the law exists.
In addition to making the law permanent, the bill makes critical improvements to the regulation by addressing unnecessary barriers to access. All of the obstacles are important to address. However, never being told the option exists is of particular concern.
According to the same 2019 survey by the California Health Care Foundation cited earlier: “Over nine in 10 respondents of all races/ethnicities and income levels said they would want ’as much information as possible’ if faced with a serious illness.”
“You have six months or less to live” indicates a terminal illness, and that conversation is sacred. Deciding what to do next regarding treatment, end-of-life care, and how you spend the rest of your days should be between you, your doctor, and your family, based upon your personal beliefs and spiritual values.
Yet, many religious medical systems sprawling across California have policies opposing the law, which eliminate the opportunity for entire communities to receive full information about their end-of-life care options. Providers who work for these systems are not allowed to tell you the option of medical aid in dying exists. The very providers we love and trust the most, who we look to in our most vulnerable times, cannot fully inform us of our options when facing a terminal illness whose well-known signature expression is pain and suffering.
According to the National Cancer Institute at the National Institutes of Health, it was estimated that in the year 2020, 606,520 people in the United States would die from cancer.
Per the California End of Life Option Act 2019 Data Report by the California Department of Public Health, of the 405 Californians who died pursuant to the law in 2019, 67.9% died of cancer.
The health-care institutions that oppose the End of Life Option Act are interfering with the sacred conversations of many dying Californians with their doctors. I don’t know about you, but I want the full truth and nothing more. Senate Bill 380 ensures health-care systems cannot withhold the fact the law exists, while maintaining well-designed and time-tested safeguards in California’s law.
Dying Californians need your support. Now is the time for individuals and organizations to endorse this bill. If ever you hear the words “You are dying,” may your end-of-life care planning conversations be sacred.
Bonnie McKeegan is a social worker and writer who lives in Grass Valley.
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