Physician-assisted suicide is illegal in all but five states. But that doesn’t mean it doesn’t happen in the rest. Sick patients sometimes ask for help in hastening their deaths, and some doctors will hint, vaguely, how to do it.
This leads 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’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 Arnold. “everybody we ever interacted with, no one said, ‘You’re dying.’”
Until finally, one doctor did. And that’s when Falk, who was just 35, started to plan. He summoned his extended family. And Hope made arrangements for him to come home on hospice.
‘I Couldn’t Ask Anybody’
The day her husband was discharged from the hospital, Arnold was dropping off some paperwork when she bumped into one of his 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.’ ”
Arnold says she handed the bottle back. She told the doctor the hospice was going to bring a machine that would administer Falk’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,” Arnold 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, Falk deteriorated quickly. Arnold says the hospice nurse offered another euphemism: “He said, ‘He’s showing signs of imminence.’ ”
Arnold worried that Falk 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,” Arnold says. “I couldn’t ask anybody anything.”
If Arnold could have asked Stanford medical ethicist David Magnus, he could 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.”
In the end, Arnold didn’t do anything with the extra vial of morphine, and 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,’ ” she 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.”
‘Winks And Nods’
People don’t talk about it, but it happens. Just over 3 percent of U.S. doctors said they have written a prescription for life-ending medication, according to an anonymous survey published in the New England Journal of Medicine in 1998. 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 & 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.”
It’s a game one San Francisco woman is all too familiar with. (KHN and KQED are withholding her name 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.”
–April Dembosky, KQED
This story is part of a reporting partnership that includes KQED, NPR and Kaiser Health News.
Enlightened says
We as human beings are kinder to our pets. We will give them an injection so they will pass away peacefully. On my way home from the vet, I started thinking about why we let people suffer. It just seems wrong. I don’t know if I could do this to anyone and have it on my conscience for the rest of my life. Either way is a bad decision. All I know is when my time comes, I hope someone loves me enough to end the suffering.
PeachesMcGee says
We need centers like in the movie Soylent Green.
Kendall says
If I or a close loved one is ever dx with a terminal illness you can be certain I will find a way to amass whatever meds are needed to end the suffering when we all come to a consensus that it’s time. Illnesses like ALS, cancer, Alzheimer’s and others rob us of the dignity we deserve to preserve until our final breath. I will go on my own terms.
[email protected] says
I feel like we should all be thinking of our exit plans. I agree with Kendall, I want to go out on my own terms.
Deborah Susswein says
I heard Ms Dembosky’s story on NPR–I think it was earlier this week–and I was glad it was aired and even more pleased that there is local support for terminal patients with six or fewer months to live who want to have a choice in ending their lives. Last month the Flagler/Volusia Chapter of Compassion & Choices began; we meet in Palm Coast at the PC Community Center and will continue to meet there on a monthly basis. Days and times from June on to be determined.
bradley williams says
Thankfully physician assisted suicide remains a homicide in Montana. Our 2011, 2013 and 2015 legislature rejected Oregon style bills that would have permited euthanasia. Thankfully our legislators read the bills and keep us safe.
a tiny manatee says
You wouldn’t think this if you had a terminal disease that inflicted you with immense pain with no recourse whatsoever except to slowly waste away in agony.
Deborah Susswein says
None of the five states that support aid in dying allow euthanasia. Euthanasia is doctor-administered medication and could potentially be abused, while the self-administering of medication to end life is totally, 100% chosen and acted on by the patient. The patient must go through a rigorous screening–two medical doctors, including a specialist who treats patients with the condition the patient has, must give a diagnosis of a terminal illness and the prognosis of six months or less to live, and a psychological test to determine if the patient is of sound mind and not being influenced by any other person to carry out end-of-life wishes. These patients don’t want to die, they want to end the excruciating pain that will likely get worse as time goes on, seizures that also get worse, humiliation and helplessness that often goes with these progressing diseases, the huge financial expense and agony that the family must endure that only ends in death anyway. Many, if not most, of the patients who choose to get the medication, end up dying naturally. This choice allows patients to change their minds, and many do. They had been totally helpless with absolutely no control over anything in their lives, and the stress of their pain and seeing their families suffer can now be relieved to a great extent: for the first time in a long time they now have autonomy, a choice, a say in how they want to live their remaining time and how they choose to die. This relief can ease much physical pain and help patients to extend quality time with family.
Bradley Williams says
Deborah, I suggest you read the Oregon law and proposed bills on legalizing assisted suicide. The sales pitch you posted here is recognized as false advertising in Montana. My testimony on SB 202 Montana 2-10-2015 is a matter of public record.
There are 3 entities that reap windfall profits when someone’s life is cut short; the government, the insurance industry and the corporate proponents of SB 202.
SB 202 has the same loopholes as their previous bills that were rejected in 2011 (SB 167) and 2013 (SB 220). All three proposed bills are proof in the public record that the proponents key marketing points are fraudulent advertising. Understand that they were the largest lobbying spender during the last legislative session, 2013. In 2008 they invested over $5,000,000 in sound bites to pass an initiative in Washington State. They have established monopolies and profit centers in Oregon and Washington managing most of the lethal events collecting fees/commissions/memorials from the heirs.
Their proposed bills negate their leading marketing sound bites: choice, must self-administrate and safe guards including 2 doctors required. It is a classic bait and switch where they are counting on the public not reading their bills. Thankfully our Montana legislators do read the bills.
*Someone who claims to know how the person communicates may speak for them. Whose choice might that be? An heir may be involved in the sign up process. In fact once the lethal prescription is written an heir can pick up the prescription, bring it into the residence and since no witness is required the heir may covertly administer the lethal dose in their apple sauce. No one would know if the person struggled. And everyone involved has immunity. Most Montanan’s are not for that. Is there anyone in this room that is for non-voluntary euthanasia for the sake of convenience and an inheritance? I did not think so. Then no one in this room should support SB 202. **They even redefine self administer as “ingested” so there is no recourse for survivors to question. They also use the phase, “may self-administrate” several times in the bill. ***They often have said in their events that they always get a second opinion, yet their bill provides that the 1st doctor may waive the second doctor.
This is enough proof in the public record to pursue a truth in advertising restraining order for them to stop their false advertising campaign in Montana.
There are other loopholes among the double speak such as ****family notification is not required and their definition of terminally ill (which will be the trigger for the health systems’ course of action) is broad enough to include a young person being successfully treated for diabetes or HIV. A facility that is known to be the go-to-place for euthanasia may not be down- graded.*****
Marilyn Golden, senior policy analyst with Disabilities Rights Education & Defense Fund, said “If these bills pass, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or proposed that can prevent this outcome, which can never be undone”.
Montana disability rights advocates describe their bills as blunt instruments. A license to sift through our elders with disabilities for the sake of corporate profits is not for sale in Montana.
Vote NO on SB 202.
*SB 202 page 1 line 22, **pg 2 line 25, ***pg 6 line 7, ****pg 6 line 23, *****pg 11 line 9
Deborah Susswein says
I have read the Oregon law. My comments were based on its contents. I don’t know about Montana’s proposed legislation. I will have to read it before I can comment further.
Bradley Williams says
Deborah, Thank you for your professional response. When I was first learning about this issue I was only finding emotional and philosophical positions on both sides. Then thankfully I came upon an article named “Death with Dignity What Do We Tell Our Clients?https://choiceisanillusion.files.wordpress.com/2011/11/barnews2009.pdf” . It is written by a Washington State lawyer and approaches the issue from a legal advise point of view. It was very refreshing. I found that approach is well received by the public. I have served 60 days at fair booths across Montana. Of all the folks that confronted me with the thought that they might be in favor of legalization, nearly all flipped to be opposed after they learned how the Oregon and Washington laws were written with loopholes for abuse ready and available. Respectfully, Bradley
Deborah Susswein says
I just visited the site you’re linked to. From the text about the bill you referred to: “On February 11, 2015, SB 202, seeking to legalize assisted suicide and euthanasia, was tabled in committee . . . ” As I said, Oregon’s law is about aid in dying/death with dignity (what some call assisted suicide). But Oregon et al. DO NOT INCLUDE EUTHANASIA. There is a HUGE difference between the two. Take a look at Oregon’s law again–you will see that it’s totally up to the patient–physician interference prohibited. No coercion, no “false advertising”; I didn’t read the whole bill, but it’s clear from the opening statement, that we’re talking about two different things.