Courtesy of The New York Times.com | By Diane Rehm | Illustration by Hokyoung Kim | Originally Published 06.08.2018 | Posted 07.18.2018
Ms. Rehm’s husband died four years ago.
It was an emotional moment for my friend and for me. As we sat in the living room of her home in California, she told me that the breast cancer that had been responding to treatment for several years had spread throughout her body. “It’s everywhere now,” she said, adding without a trace of self-pity: “I have less than six months to live. I’m so grateful that I won’t have to spend my last days or weeks in extreme agony.”
She could tell me that because California’s End of Life Options Act — supported by 76 percent of her fellow Californians, passed by the State Legislature and signed into law by Gov. Jerry Brown — had gone into effect on June 9, 2016. The law made it legal for doctors to prescribe drugs to end the lives of terminally ill patients, and my friend found solace in knowing she would have this choice. Her husband and children, who had seen her bear years of chemotherapy and other treatments and supported her as her pain intensified, wouldn’t have to watch cancer torture her mercilessly as it took her life.
California’s law was modeled after the one enacted in 1997 in Oregon, as were similar laws in Washington, Vermont, Colorado and, most recently, the District of Columbia and Hawaii; Montana also permits this end-of-life option as a result of a judicial decision rather than legislation.
But this source of comfort was ripped away from my friend and her family last month when a judge in Riverside County overturned the law on a technicality. His reasoning? The measure was passed during a special legislative session dedicated to health care issues, and complainants argued that it wasn’t about health care.
Try telling that to my friend or the many others whose lives were upended by the decision of the judge, Daniel Ottolia. As opponents of the law cheer, she and her loved ones prepare for the anguish to come.
My children and I can empathize. In two weeks, we will mark the fourth anniversary of the death of John Rehm, my husband. He, too, had under six months to live and, he, too, was suffering to such a degree that he begged for medical aid in dying. But that option was not available in Maryland, where he was in an assisted living center. He ultimately chose to end his life by refusing to eat, drink and take medications. It took him 10 long and miserable days to die.
As in my friend’s case, my husband was already going to die. He had Parkinson’s disease, which left him unable to feed himself or do anything else without assistance. He did not choose what some insist upon labeling “suicide.” Those who commit that act do not want to live. Most terminally ill patients like John would choose life if they could.
So today my friend and many other Californians are staring death in the face, without the degree of control over it that the End of Life Options Act briefly granted them. Some people will say they should place their faith in treatments to ease their pain. But despite the compassionate work of hospice and palliative care personnel, those treatments have their limits and cannot offer all patients the end-of-life experience they seek.
Furthermore, as my friend told me, “I am the only one who can define when my suffering has become unbearable.”
John’s death reinforced my belief that medical aid in dying should be a choice available to all Americans. That’s why I have been interviewing patients and doctors for a documentary on the subject, “When My Time Comes.”
What’s happening in California now is an unnecessary tragedy. Judge Ottolia’s decision is being appealed, and a hearing will be held later this month. But it could take many months to play out in the courts — months during which dying patients will be denied the option to mitigate their pain and distress. The Legislature could reintroduce the measure and pass it anew — but that process will also take time.
I believe that this must and will be remedied. My confidence comes from the fact that individual Americans seeking autonomy are driving the national movement for medical aid in dying. Nearly three-quarters of Americans believe that terminally ill patients should have that option.
Let me be clear: I understand that many people believe that only God should determine the time of their death, and I support them 100 percent. Others want every additional minute of life that medical science can give them, and I support those people 100 percent. But the end of life is an extremely personal experience. If, when my time comes, I see only unbearable suffering ahead of me, then I want my preference to have access to medical aid in dying to be supported 100 percent, as well.
As Archbishop Desmond Tutu has written, “Regardless of what you might choose for yourself, why should you deny others the right to make this choice?”
The California law was allowing patients that choice. Its nullification is causing them cruel and unnecessary torment.
Diane Rehm, who hosted “The Diane Rehm Show” on NPR for 37 years, is a producer of the forthcoming documentary “When My Time Comes” and host of the podcast “On My Mind.”