Coded Talk About Assisted Suicide Can Leave Families Confused
Physician-assisted suicide is illegal in most states in the U.S. But there are gray areas where doctors can help suffering patients hasten their death. The problem is nobody can talk about it directly.
This can lead to bizarre, veiled conversations between medical professionals and overwhelmed families. Doctors and nurses want to help but also want to avoid prosecution, so they speak carefully, parsing their words. Family members, in the midst of one of the most confusing and emotional times of their lives, are left to interpret euphemisms.
That still frustrates Hope Arnold. She says throughout the 10 months her first 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, everybody we ever interacted with, no one said, 'You're dying,' " she recalls.
Until finally, one doctor did, she says. That's when J.D., who was just 35, 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 at a medical office 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."
When J.D. Falk was dying of stomach cancer in 2011, his wife says doctors would only talk about death in euphemisms.
Over the next couple days, J.D. deteriorated quickly. Hope worried that J.D. was in a lot of pain but she couldn't tell. She was afraid that if she asked the nurse, 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."
If Hope had asked Stanford medical ethicist David Magnus, he would have explained what assisted suicide is – and what it 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," Magnus says. "And that's a tricky thing because it has to do with what's going on in the mind."
He and others say this kind of situation is a symptom of a much bigger problem: Doctors are just plain bad at communicating about death.
"Across the board with end-of-life care clinical interactions, they're full of misunderstandings," he says.
He suggests that what some people interpret as hints on how to hasten someone's death, maybe aren't.
Just over 3 percent of U.S. doctors say they have written a prescription for life-ending medication. Almost 5 percent of doctors reported giving a patient a lethal injection.
"Those practices are undercover; they are covert," says Barbara Coombs Lee, president of Compassion and Choices, an advocacy group. "To the degree that patients are part of the decision-making, it is by winks and nods."
Coombs Lee's organization helped tell the story of Brittany Maynard, a 29-year-old woman who moved from California to Oregon to be able to end her life legally after she was diagnosed with a brain tumor. Now the organization is backing legislation in California to make it legal for doctors to prescribe lethal medication to terminally-ill patients who request it.
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."
In the end, Hope didn't do anything with the extra vial of morphine. Her husband died within days of coming home on hospice.
"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."
This story is part of a reporting partnership that includes NPR, KQED and Kaiser Health News.
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Transcript
ROBERT SIEGEL, HOST:
Physician-assisted suicide is illegal in most states of the U.S. There are gray areas where doctors can help suffering patients hasten their death, but no one can talk about those directly. From KQED in San Francisco, April Dembosky has this story of one woman's isolation and fear when her husband was dying.
APRIL DEMBOSKY, BYLINE: Hope Arnold remembers the day her husband was discharged from the hospital. He had stomach cancer, and treatments were no longer working for him. So Hope finalized plans with the local hospice. She dropped off some paperwork at a medical office and bumped into one of her husband's doctors.
HOPE ARNOLD: And he hugged me and asked me how I was holding up. And then he handed me a bottle of liquid morphine. And he said, you might need it.
DEMBOSKY: Hope handed the bottle back. She said the hospice was going to take charge of her husband's pain medication.
ARNOLD: And he looked at me and he held my gaze for a second. And he put it back in my hand, and he said, you might need it.
DEMBOSKY: She slipped the vial in her purse.
ARNOLD: When I got home, it hit me like a ton of bricks. 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.
DEMBOSKY: J.D. Falk deteriorated quickly. Hope worried that he was in a lot of pain, but she couldn't tell.
ARNOLD: And I couldn't ask the nurse that.
DEMBOSKY: She was afraid that if she asked, it would betray the thoughts she was starting to have about that extra vial of morphine.
ARNOLD: I couldn't ask anybody anything because then I would've tipped my hand.
DEMBOSKY: Just over 3 percent of U.S. doctors say they have written a prescription for life-ending medication. Almost 5 percent of doctors reported giving a patient a lethal injection. Barbara Coombs Lee is president for the advocacy group Compassion and Choices.
BARBARA COOMBS LEE: Those practices are undercover. They are covert to the degree that patients are part of the decision making. It is by winks and nods.
DEMBOSKY: Her organization actually guides dying patients on how to get around the law.
COOMBS LEE: We talk with people about how they might broach the subject with their physician, and quite frankly, how to play the wink-and-nod game.
DEMBOSKY: It's a game Hope found herself entangled in during her husband's last days - a game where she didn't know the rules. Hope felt like she couldn't think straight.
ARNOLD: It's just like this foggy, like, dream state.
DEMBOSKY: Should she do it?
ARNOLD: I wasn't sleeping right.
DEMBOSKY: When should she do it?
ARNOLD: I was beyond stressed.
DEMBOSKY: What if she did it wrong?
ARNOLD: Exhausted.
DEMBOSKY: Medical experts say this kind of situation is a symptom of a much bigger problem. Stanford ethicist David Magnus says doctors are just plain bad at communicating about death.
DAVID MAGNUS: Across the board with end-of-life care clinical interactions, they're full of misunderstandings.
DEMBOSKY: He suggests what some people interpret as hints on how to hasten someone's death, maybe aren't.
MAGNUS: That may be how the family perceived it.
DEMBOSKY: On the flip side, Magnus says what some people believe is assisted suicide actually isn't. It's 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.
MAGNUS: The difference there really has to do with intent, and that's a tricky thing 'cause that has to do with what's going on in the mind.
DEMBOSKY: Hope wondered what was going on in her husband's mind. He never actually said he wanted her to give him an overdose. Hope thinks that's because he didn't want to ask her to commit a crime.
ARNOLD: He didn't want to put me in that position.
DEMBOSKY: In the end, she didn't do it. Her husband died under hospice care just a couple days after he got home. Hope left the morphine vile untouched.
ARNOLD: I don't know whether or not he wanted that. That's not the point. The point was nobody could talk about it.
DEMBOSKY: Not her husband, not the doctors - everyone was speaking in code at a time when she was desperate for clarity. For NPR News, I'm April Dembosky in San Francisco.
SIEGEL: That story is part of a reporting partnership of NPR, KQED and Kaiser Health News. Transcript provided by NPR, Copyright NPR.
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