After passage by Californians at the ballot box, legal challenges, religious opposition, then finally the support of long-time opponent the California Medical Association, the California End of Life Option Act was signed into law by Governor Jerry Brown on October 5, 2015, and took effect the following year.
On a recent November morning in 2019, I had a front-row seat in a close friend’s living room. I was honored to sit quietly in a circle around Jeanne’s hospital bed, say good-bye and tell her how much I loved her, and to share her closely considered assisted death under the conditions of our state’s hard-won new law.
Jeanne was diagnosed with Stage IV pancreatic cancer 18 months ago, and like every other cancer patient I have known, hoped for a miracle that would reverse the stark survival stats of this virulent and relentless disease. This brings us to the first fork in the road: go home and get your affairs in order or enter what I call Cancerland. Jeanne chose Cancerland.
Once you enter Cancerland your life as you’ve known it ends. Since Jeanne had Medicare and high-end private gap insurance, it was a full-court press. Five days a week were filled with appointments with oncologists, psychiatrists, end-of-life physicians (there is only one in our wealthy suburban area who will take it on) and a small army of techs who performed PET scans, cancer-marker blood tests and whatever else the medical/pharmacological industries have dreamed up. We even went to UCSF, where’s there’s a wing devoted just to pancreatic cancer. The dimensions and breadth of this business are staggering. It’s no wonder we’ll never see single-payer in our lifetimes.
Then one sunny day chemo began. Because her cancer had metastasized to other organs, Jeanne’s chemo contained a series of brand-new, uniquely super-aggressive chemicals. She felt sick all the time, lost her hair, pretty much couldn’t eat, and had chronic diarrhea. Her skin was so dry she couldn’t touch her arms without touching off an avalanche of dry flakes. Her regular scans continued, of course, and one day the cruelest thing imaginable happened to my friend: a scan showed that her tumors had shrunk into near non-existence. Hope – that sneaky deceiver – returned. Maybe she would beat the odds, maybe she’d see her grandkids graduate from high school, maybe a new medical break-through would save her, maybe she’d feel healthy again, maybe she’d even rejoin the blithe and unconscious ranks of the still-well.
It all suddenly seemed possible. She would be the exception who beat it, cancer would take her off its kill list. In a rush of new optimism she discounted the cautious tone in her oncologist’s voice when he told her that her response to chemo was unprecedented and truly remarkable but…still… she had Stage IV pancreatic cancer, which basically hides out in your body, waiting patiently for chemo to end so it can burst forth into full bloom.
And she did get a few more months, though there were a couple of scares. There was the spot in her breast, which proved to be benign but became the first chip in her hope for a full recovery. Waiting, always waiting. Then she started to feel sick, really sick, and her abdomen filled up with so much liquid that she couldn’t fit behind her steering wheel. Finally she was admitted to the hospital for a week, where she couldn’t move at all and had to be belted into a chair. The cancer was everywhere. She’d hit the wall.
When I visited her she was wearing her red DNR wristband and said she wouldn’t live like this, that she had watched her own mother die in agony from the same cancer and promised herself she wouldn’t suffer through that and put her kids through it. Her voice was strong, clear, determined. She knew what she wanted. Jeanne finally went home with hospice, where she lay stiffly like a graying statue in another hospital bed, this time at home.
Jeanne’s end-of-life doctor, an activist in the “Death with Dignity” movement, prescribed the so-called “cocktail” of chemicals that would kill her in her own living room less than half-a-week later. She had just taken three anti-nausea pills when I arrived at her house with two other close friends. We sat in a sort of semi-circle around her bed, where we waited a little more than half an hour for the next drugs, which I think relaxed her in some way. Jeanne’s nervous little black-and-white rescue dog periodically walked up to her bed, her black claws clicking and clacking on the hardwood, before retreating to the back of the room. She knew something was up. The drugs that would stop Jeanne’s heart were still about half an hour away.
Jeanne was mostly alert as we all chatted. She was an introvert and appreciated peace and contemplative quiet. But people can be funny when they’re uncomfortable or nervous and soon the group was bantering across the bed about how many cup holders there are for the kids in a large SUV, who had the first VW Beetle, what a granddaughter’s theatrical production was like at camp. I realized that many people are uncomfortable, perhaps even fear silence. I hope that anyone reading this will remember that if and when he or she finds him or herself sitting in a living room in a similar circumstance. It’s OK to just be quiet and hold someone’s hand. The dying person doesn’t need to hear the latest joke, how cold it is on the East Coast, how expensive it is to live in the Bay Area. Jeanne was way, way past those meaningless temporal concerns. She wasn’t afraid. But she knew she was staring Death in the eye and that Death wouldn’t be the first one to blink.
Under the law, a dying person choosing assisted suicide must take all end-of-life meds him or herself. So someone in the kitchen would prepare the meds, mix them with lemonade, and hand them over with a bowl of sorbet to cut the bitter taste.
Her son finally handed her a heavy white ceramic coffee cup, the kind you see in diners, with the third and final drugs that would end her life. After the first taste Jeanne’s face was a mask of horror; the taste must have been awful. But determined as I knew her to be, she took a few bites of sorbet, gamely picked up the white cup and drained it. Within only a few minutes her eyes rolled back in her head so only the whites showed. Her son kept trying to close them. We thought for sure it must be near the end. But then things became uncertain as Jeanne’s breathing seemed to stop before starting again with a sharp gasp. How would we know when she was really dead? After about half an hour she just wasn’t breathing anymore and it was over.
There’s no moral here. Had Jeanne not chosen the terms of her death and gone naturally into a coma, her final hour could have been much the same. But she had a choice, and that is what made all the difference. If it were possible for her to come back…just for a minute…to tell us so, I know she would say she chose her own, best path without regret.