Coombs Lee’s group guides dying patients on current law.
“We talk with people about how they might broach the subject with their physicians,” she says, “and quite frankly, how to play the wink-and-nod game in a way that doesn’t jeopardize their physician.”
It’s a game one San Francisco woman is all too familiar with. (Her name is withheld at her request to protect her privacy.) She lived in San Francisco during the 1980s and watched one friend after another die of AIDS.
“The guys would have fungus everywhere,” she recounts. “Horrible diarrheas, emaciation. It looked like concentration-camp pictures.”
A lot of her friends begged for lethal drugs to end their suffering, and she and the other caregivers figured out which doctors were willing to help. The caregivers coached each other on how to speak to the doctors in code.
“We would tell each other, ‘This is the doctor,’” she says. “‘They’re going to tell you how much is too much to give, and then they’re going to give you too much.’”
Though she witnessed many deaths hastened in this way, she says she never administered the drugs herself. Her time would come 20 years later when her husband was dying of throat cancer.
Some of his symptoms were brutal.
“It was like a horror movie,” she says, recalling the tumors all over his neck. They would fill with blood, she says, and sometimes burst.
“There’d be blood on the walls, on the mirror, everywhere,” she recounts, “And he’d be panicking.”
They were warned his death might be ugly. He might choke. He might have a seizure. More than anything, she says, he was afraid of dying in a hospital, hooked up to machines, powerless.
“He made me swear not to let anybody hospitalize him. He made me swear not to let his family swoop in and take him away.”
At one point, he threatened to shoot himself to avoid that. A nurse dropped hints that there was a different way.
“I remember being told, here’s how much pain meds you can give,” she says, “but beyond this, he’ll probably stop breathing.”
Her husband made it clear to her that this was the way he wanted to go. Several times, she says, he reviewed the instructions with her.
Months later, he slipped into a coma. When the nurse said he looked like he was a day, maybe hours, away from dying, it seemed like another hint.
“And I remember standing there with syringes in my hand. Just standing there, with my hands shaking,” she says. She remembers thinking, “Okay, what goes with what?’ And I was all alone. And that was about the most alone I’ve ever felt. That I couldn’t tell anybody else.”
She injected the drugs. Then she crawled into bed with him and held him and talked to him for the next six hours.
“And he literally died in my arms. I was holding him when he stopped breathing. And it was really peaceful. He just sort of drifted away.”
For years, she had nightmares about holding the syringes, but today she is confident that she did the right thing. Her husband’s death was calm and peaceful and exactly what he’d asked for. But she resents that she was the one who had to do it, that she had no help and no real guidance from a medical professional.
“I don’t regret it, but I wouldn’t wish it on anybody else. It’s not fair. It’s not right,” she says. “It’s not like choosing to die doesn’t happen. We just make it be sneaky and we put it on the wrong people.”
This article appears courtesy of Kaiser Health News.