Bonnie McKeegan: Let’s cut needless red tape for dying Californians
My mother’s death from metastatic breast cancer was peaceful and, as strange as this sounds, beautiful — thanks to California’s End of Life Option Act.
On Feb. 5, 2018, my mother left life’s grand adventure early; only a few days ahead of the dreadful death breast cancer was bringing.
My mom died peacefully, held by my father and me, on the day of her choosing before cancer took every last ounce of dignity she had left. California’s End of Life Option Act is a compassionate law that allows mentally capable, terminally ill adults to request a doctor’s prescription for medication they must self-administer to help them die in their sleep, without unnecessary pain, if their suffering becomes unbearable.
But, getting to my mom’s peaceful death was not simple or easy. While medical aid-in-dying is legal in California, this law can still be very difficult to access and there are large regions where there are no participating doctors. Dying Californians, like my mom, face multiple roadblocks to achieving a peaceful death — red tape that caused my mom needless anxiety and suffering during her final days. This is why I traveled to Sacramento last month to testify during the second hearing about how the End of Life Option Act is working since the law took effect on June 9, 2016. I spoke before the California Assembly Select Committee on End of Life Health Care led by Assemblymember Susan Talamantes Eggman.
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I learned that California doctors report that the law is spurring more candid conversations with their terminally ill patients about all end-of-life care options, higher hospice usage rates, and improved palliative care training for physicians. Yet, too many eligible dying Californians are unable to use the law because of burdensome bureaucratic barriers.
Two life-changing words: terminal cancer. Maybe you or a loved one has heard similar words. Planning for end-of-life care should start from the beginning and include discussions with your doctor about all of the options, including the End-of-Life Option Act.
My mother’s greatest fear of suffering while dying came from watching my brother suffer, not just in pain, but from the loss of control over everything, before his death from malignant melanoma in 2002, and from her years of experience as a hospice caregiver. She knew what her future with terminal cancer looked like. My mom begged my dad and me not to let her suffer.
We promised, but there was no End of Life Option Act at the time, so we reassured her hospice would provide the best care possible when the time came.
My mom was no chicken. She was a courageous warrior who endured more than four years of medication, chemotherapy, and even a round of radiation. She bore her suffering with grace while cancer continued to spread in her bones, and to her lungs and liver. Her pain became unbearable and her suffering was a continual struggle. By the end of 2017, it was clear aggressive treatment was not working.
We were relieved to learn that the End of Life Option Act meant she could die at home, in her sleep, in peace. But to get the aid-in-dying medication, the law requires patients to submit two verbal requests to their primary attending physician, a minimum of 15 days apart. Unfortunately, my mom’s oncologist declined to participate when she asked him for the prescription and referred her to another doctor. It required a difficult car ride more than an hour away. At the first appointment available beyond that 15-day waiting period — as required — she made what we thought was the second request to the new attending doctor.
Imagine our shock when we learned that my mom had to wait yet another 15 days — and make yet another painful car trip. The doctor explained that both requests had to be to the same doctor 15 days apart. The first ask to the oncologist didn’t count.
My mom spent those extra two weeks suffering from pain and anxiety, plus living with the fear that she would lose the required mental capacity and physical ability she needed to take advantage of the law, and then die the painful death she knew was coming. Despite everything, she rallied her courage and made it to the second appointment.
The following day, I drove an hour to pick up my mom’s prescription — access to a pharmacy, yet another barrier Californian’s face. Three days later, she took the medication. My mom closed her eyes and went into a deep comfortable sleep before dying.
Honorable members of the Legislature, you have the power to eliminate the required 15-day waiting period between requests for medical aid-in-dying or to waive this waiting period if the patient is likely to die imminently. Making patients wait is causing needless suffering, and in some cases, patients die a horrific death while trying to access the law.
I urge you to fix the End of Life Option Act so it truly provides a peaceful option at life’s end, instead of forcing dying Californians, like my mom, to spend their last days navigating a confusing and senseless red-tape system that only causes more suffering.
Bonnie McKeegan is a social worker who lives in Grass Valley.
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