When J.D. Arnold was dying of stomach cancer in 2011, his wife says doctors would only talk about death in euphemisms. (Photo: Hope Arnold)
When J.D. Falk was dying of stomach cancer in 2011, his wife says doctors would only talk about death in euphemisms. (Photo: Hope Arnold)

Physician-assisted suicide is illegal in California. But that doesn’t mean it doesn’t happen. Sick patients sometimes ask for help in hastening their deaths, and some doctors will explain, vaguely, how to do it.

This leads to bizarre, veiled conversations between medical professionals who want to help, but also want to avoid prosecution, and overwhelmed family members who are left to interpret euphemisms at one of the most confusing times of their lives.

That’s what still frustrates Hope Arnold. She says throughout the 10 months her husband J.D. Falk was being treated for stomach cancer in 2011, no one would talk straight with them.

“All the nurses, all the doctors,” says Hope, “everybody we ever interacted with, no one said, ‘You’re dying.’ ”

Until finally, one doctor did. And that’s when J.D. started to plan. He summoned his extended family. And Hope made arrangements for him to come home on hospice.

The day he was discharged from the hospital, Hope was dropping off some paperwork when she bumped into one of J.D.’s doctors.

“He hugged me and asked me how I was holding up,” she says. “And then he handed me a bottle of liquid morphine. He said, ‘You might need it.’ ”

Hope says she handed the bottle back. She told the doctor the hospice was going to drop off a machine that would administer J.D.’s pain medication automatically.

“And he looked at me,” she says, “and he held my gaze for a second. And he put it back in my hand and he said, ‘You Might. Need it.’”

She slipped the vial into her purse.

“When I got home, it hit me like a ton of bricks,” Hope remembers. “And I said to J.D., ‘I think he may have given this to me so I can give you an overdose.’ And he said, ‘Maybe.’ And then we didn’t talk about it anymore.”

Over the next couple days, J.D. deteriorated quickly. Hope says the hospice nurse offered another euphemism.

“He said, ‘He’s showing signs of imminence.’ ”

Hope and J.D. Falk, on their wedding day. (Photo: Hope Arnold)
Hope and J.D. Falk, on their wedding day. (Photo: Kelly Dunsford)

Hope worried that J.D. was in a lot of pain. But she couldn’t tell. She was afraid that if she asked, it would betray the thoughts she was having about that extra vial of morphine.

“I couldn’t ask the nurse that,” Hope says. “I couldn’t ask anybody anything.”

In the end, she didn’t do it.

“J.D. never told me, ‘I do want you to give me too much morphine,’ ” Hope says. “Actually, I don’t know whether or not he wanted that. That’s not the point. The point was nobody could talk about it.”

People don’t talk about it, but it’s happening. Just over 3 percent of U.S. doctors say they have written a prescription for life-ending medication, according to an anonymous survey published in the New England Journal of Medicine. Almost 5 percent of doctors reported giving a patient a lethal injection.

Other studies suggest oncologists, and doctors on the West Coast, are more likely to be asked for life-ending medication, or euthanasia, in which the doctor administers the lethal dose.

“Those practices are undercover, they are covert,” says Barbara Coombs Lee, president of Compassion and Choices, an advocacy group that is backing legislation in California to make it legal for doctors to prescribe lethal medication to terminally-ill patients who request it.

“To the degree that patients are part of the decision-making,” Coombs Lee says, “it is by winks and nods.”

Her organization actually guides dying patients how to get around 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 Laura Bennett is all too familiar with. (Laura’s name has been changed to protect her privacy.) Laura 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 the guys begged for lethal drugs to end their suffering. Laura and her friends figured out which doctors were willing to help.

“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 Laura witnessed many deaths hastened in this way, she says she never injected the drugs herself. Her time would come 20 years later when her husband John was dying of throat cancer. (John’s name has also been changed).

Some of his symptoms were brutal.

“It was like a horror movie,” Laura says, recalling the tumors all over John’s neck. They would fill with blood, she says, and sometimes burst.

“There’d be blood on the walls, on the mirror, everywhere,” Laura recounts, “and I’d be trying to keep him from drowning in it because it’d be going down his trach. And he’d be panicking.”

John was warned his death might be ugly. He might choke. He might have a seizure. More than anything, Laura says, John was afraid of dying in a hospital, hooked up to machines, powerless.

“He made me swear not to let anybody hospitalize him,” she says. “He made me swear not to let his family swoop in and take him away.”

At one point, John threatened to shoot himself to avoid that. Laura says 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.”

John made it clear to Laura that this was the way he wanted to go. Several times, she says, he reviewed the instructions with her.

Months later, John slipped into a coma. When the nurse said he looked like he was a day, maybe hours, away from dying, Laura took it as 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, goes with what?” Laura’s voice falters. “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 John 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,” Laura says. “And it was really peaceful. He just sort of drifted away.”

For years after John was gone, Laura had nightmares. Nightmares of staring at those syringes in her hand.

Today, she is confident that she did the right thing. John’s death was calm and peaceful and exactly what he’d asked for. But Laura resents that she was the one who had to do it, that she had no help, 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.”

Medical experts say stories like these are symptoms of a far bigger problem. Stanford medical ethicist David Magnus says doctors are just plain bad at communicating about death.

“What we really need is a much better, comprehensive discussion with patients about what they really want and what they care about and what they value,” Magnus says, “and that’s exactly what you tend not to get in medical settings.”

This leads to confusion. Magnus suggests that what some people interpret as hints on how to hasten someone’s death, actually aren’t.

“Across the board with end-of-life care clinical interactions, they’re full of misunderstandings and misinterpretations,” he says.

On the flip side, Magnus says what some people believe is assisted suicide, actually isn’t. It is legal for people to take or give large doses of narcotics to relieve pain, even if a known side-effect is that it may hasten death.

“The difference really has to do with intent,” he says. “And that’s a tricky thing because it has to do with what’s going on in the mind.”

It’s such a fine line. When doctors are already so bad at understanding what dying patients and their families want, how good can they be at deciphering why?

Death in Secret: California’s Underground World of Assisted Suicide 23 April,2015April Dembosky

  • reddiva

    such a fine line! let’s make it clearer

  • Human

    Let us make our own decision to die if needed and make it legal!

    • Willam Nat

      If it’s made legal, it will not ONLY affect only YOU. It will place the elderly poor, people with disabilities and the mentally ill in danger.

  • Susie Rogers

    We have no choice how we come into this world. But we should be allowed to make our own decision to die.

    • Willam Nat

      You saying that does not make it true. It is especially not true for people with dementia and the depressed. This proposed law would place those already vulnerable people in danger. Please think of them . . . not just yourself.

  • Sam’s Bubbe

    I don’t believe this story. A physician would not be walking around with a vial of morphine in his pocket, and handing it to a patient’s wife. Morphine is not dispensed by physicians, only by pharmacists and there is a tightly controlled paper and electronic accounting. Besides, if the patient is already receiving strong painkillers, it is very difficult to kill them with an overdose – that’s what “tolerance” is about. I am disappointed to see KQED being a forum for this sensationalist reporting.

    • Vertu

      When my father was dying of ALS, his doctor handed us a vial of morphine and told us what amount would be “too much” if injected in his feeding tube. This story is indeed accurate, and the description of the terror and loneliness due to the lack of professional support is also true.

    • Hope Arnold

      Dr. Menkin, I’m disappointed that you will publicly question the journalistic integrity of KQED because what happened to me is something you don’t want to believe another physician would do. Part of the story I shared was edited out (I’m guessing due to time limits). When the doctor handed the morphine back to me he explained it was because the machine provided by hospice could break down and if it did my husband would be in pain while we waited for a new one to be delivered. I do not know if he was speaking in code about giving my husband too much morphine, there is a very good chance he was not. I was an emotional mess and it is very possible I misunderstood his intention and I wasn’t free to ask. THAT is why it is so important to pass a law that allows us to speak candidly with physicians about this.

    • reddiva

      there is nothing sensationalist about this story. Many of us have had this experience: doctors and or hospice workers doing the best they legally can to give us the ‘right meds’ and instructions on how to use them.

  • lewis b puller

    if we don’t desalinate soon, then moonbeam and earth first will be assisting in the suicides of millions of Californians! after we are drought-dessicated, we will all be underground=6 feet under.

    • LoveYourDNA

      Always the idiot political comparison person.

      • lewis b puller

        we represent that.. are you a card carrying, dues-paying earth-first fellow-traveler?

  • hamptonmaxie .

    I want the right to choose when I want to exit this life. How can a woman have the right to terminate a pregnancy and I do not have the right to terminate my own life when the quality of that life has left me running on empty.

  • Simone

    When my mother was dying of pulmonary fibrosis she was anxious, more than in pain. Kaiser hospice workers left her one vial of 100 morphine pills and one vial of atavan pills. She was leery of taking them, because people in our family mostly eschewed such drugs, fearing addiction. But when she became anxious just before dying, I suggested she might want to try her pills. She thought, and decided on one morphine pill and one atavan. I gave them to her and ten minutes later she called out that they weren’t working. (My father, who was crazy, had told me to leave the room and confiscated the pills, inexplicably, so I knew the ones I gave her were her last chance.) I came back and told her ‘it’s only been ten minutes; give it a chance.’ I went outside and wrote notes on what was happening. My father called to me to come and check her pulse. She had died.
    Aside from my mother’s being prevented from having her family’s complete support, and essentially dying alone and anxious, the point was that the hospital had left her with tons of pills with which to kill oneself. No one said a thing about hastening dying, and my mother didn’t ask to die, in fact avoided the subject, and I vaguely knew morphine would stop her already weakened lungs. But it was her decision, and a limited one (‘one morphine and one atavan’) that she wanted something to quell her anxiety and so she got it.

Author

April Dembosky

April Dembosky is the health reporter for The California Report and KQED News. She covers health policy and public health, and has reported extensively on the economics of health care, the roll-out of the Affordable Care Act in California, mental health and end-of-life issues.

Her work is regularly rebroadcast on NPR and has been recognized with awards from the Society for Professional Journalists (for sports reporting), and the Association of Health Care Journalists (for a story about pediatric hospice). Her hour-long radio documentary about home funerals won the Best New Artist award from the Third Coast International Audio Festival in 2009.

April occasionally moonlights on the arts beat, covering music and dance. Her story about the first symphony orchestra at Burning Man won the award for Best Use of Sound from the Public Radio News Directors Inc.

Before joining KQED in 2013, April covered technology and Silicon Valley for The Financial Times, and freelanced for Marketplace and The New York Times. She is a graduate of the University of California at Berkeley Graduate School of Journalism and Smith College.

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