'I'm dying, you're not': Those terminally ill ask more states to legalize physician-assisted death
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Deb Robertson sits for a portrait at her Lombard, Ill. home, Thursday, March 21, 2024. She didn’t cry when she learned two months ago that the cancerous tumors in her liver were spreading, portending a tormented death. But later, she cried after receiving a call that a bill moving through the Illinois Legislature to allow certain terminally ill patients to end their own lives with a doctor’s help had made progress. Credit: AP/Charles Rex Arbogast
DENVER — On a brisk day at a restaurant outside Chicago, Deb Robertson sat with her teenage grandson to talk about her death.
She’ll probably miss his high school graduation. She declined the extended warranty on her car. Sometimes she wonders who will be at her funeral.
Those things don’t frighten her much. The 65-year-old didn’t cry when she learned two months ago that the cancerous tumors in her liver were spreading, portending a tormented death.
But later, she received a call. A bill moving through the Illinois Legislature to allow certain terminally ill patients to end their own lives with a doctor’s help had made progress.
Then she cried.
“Medical-aid in dying is not me choosing to die,” she says she told her 17-year-old grandson. “I am going to die. But it is my way of having a little bit more control over what it looks like in the end.”
That same conversation is happening beside hospital beds and around dinner tables across the country, as Americans who are nearing life’s end negotiate the terms with themselves, their families and, now, state lawmakers.
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Deb Robertson looks at a wall crafts with her chemo caps at her Lombard, Ill. home, Thursday, March 21, 2024. She didn’t cry when she learned two months ago that the cancerous tumors in her liver were spreading, portending a tormented death. But later, she cried after receiving a call that a bill moving through the Illinois Legislature to allow certain terminally ill patients to end their own lives with a doctor’s help had made progress. Credit: AP/Charles Rex Arbogast
At least 12 states currently have bills that would legalize physician-assisted death. Eight states and Washington, D.C., already allow it, but only for their own residents. Vermont and Oregon permit any qualifying American to travel to their state for the practice. Patients must be at least 18 years old, within six months of death and be assessed to ensure they are capable of making an informed decision.
Two states have gone in the opposite direction. Kansas has a bill to further criminalize those who help someone with their physician-assisted death. West Virginia is asking voters to enshrine its current ban into the state constitution.
That patchwork of laws has left Americans in most states without recourse. Some patients choose to apply for residency in a state where it’s legal. Others take arduous trips in the late-stage throes of disease to die in unfamiliar places and beds, far from family, friends and pets.
It was late at night when Rod Azama awoke to his wife crawling on the floor, screaming. Pain from her cancer had punched through the heavy morphine dose.
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Deb Robertson kisses her wife Kate Koubek, as they prepare for a meal with family and friends at their Lombard, Ill., home Saturday, March 23, 2024. Robertson didn’t cry when she learned two months ago that the cancerous tumors in her liver were spreading, portending a tormented death. But later, she cried after receiving a call that a bill moving through the Illinois Legislature to allow certain terminally ill patients to end their own lives with a doctor’s help had made progress. Credit: AP/Charles Rex Arbogast
“Let me die,” screamed his wife, Susan.
As Rod rushed to hold her, the cries faded to repeated mumbles. “Heaven,” she said, again and again.
Susan, 68, pieced through her life’s belongings — family heirlooms, photos, an antique spinning wheel — touching the memories a final time. Then she decided where their next lives would be.
She said goodbye to her constant sidekick, a small, fluffy Maltipoo named Sunny. Rod packed the dog’s favorite toy, a stuffed bunny, as a reminder for Susan, who had to leave Sunny behind.
Then the two flew to Oregon.
The issue is contentious. Opponents, including many religious groups and lawmakers, have moral objections with the very concept of someone ending their life. Even with safeguards in place, they argue, the decision could be made for the wrong reasons, including depression or pressure from family burdened by their caretaking.
“It’s normalizing suicide, and it’s incentivizing individuals to end their lives,” said Danielle Pimentel of Americans United for Life. Pimentel raised concerns that pain isn’t the top reason people choose an early departure, adding that policy should focus on bettering end-of-life care.
Two national organizations lobbying for the bills argue it’s about autonomy and compassion, some power over one’s preordained exit.
“It comes down to the right of an individual to control their own end of life decisions free from government intervention or religious interference,” said Goeff Sugerman, national campaign strategist Death with Dignity.
Even though it’s illegal in most states, a 2018 Gallup poll showed more than two-thirds of Americans support physician-assisted death.
Only a small fraction of Americans nationwide, about 8,700, have used physician-assisted death since Oregon became the first state to legalize it in 1997, according to the advocacy group Compassion & Choices. Most are cancer cases; others include heart and respiratory diseases. A third of people prescribed the medications don’t end up using them.
Gary Drake planned to. He began a Facebook post on Feb. 13 with “RIP.” The 78-year-old was referring to himself. He was off to Oregon, and wouldn’t be responding to any more messages and calls.
“I’m too busy and weak to do much more in this lifetime,” he wrote.
The jovial businessman from Florida had watched a close friend decline from late-stage lung cancer, driving him to and from chemotherapy, until his friend shot himself. When Drake received a diagnosis around Christmas that his own lung, bone and kidney cancer would end his life within six months, he didn’t deliberate long.
He signed off on Facebook: “I love you all, say a prayer for me, and I’ll see you on the other side. Bon Voyage.”
The finality of the post prompted a flood of comments, as if he were attending his own funeral.
“I know my dad and George are waiting to have a drink with you,” someone wrote.
Less than three years ago Drake wouldn’t have had the option. Oregon's residency requirement was rolled back in 2022 and Vermont's ended last year, after successful federal lawsuits argued it was unconstitutional for states to deny the service to non-residents.
While debates to legalize the bills are playing out in Kentucky, Delaware, Maryland and Iowa, among others, the advocacy organization Compassion & Choices is using the courts to try to remove residency requirements.
“People are dying right now who don’t have the luxury for endless deliberation,” said Kim Callinan, CEO and president of the group.
While California has a bill before lawmakers that would allow out-of-staters to access the procedure, that provision in a Colorado bill was stripped out. Three states, including Colorado, have proposals to expand in-state access, such as allowing advanced practice registered nurses, not just doctors, to prescribe the medication.
As Robertson discussed the topic with her grandson over noodles, he got teary eyed. If it became legal in Illinois tonight, would his grandmother be gone tomorrow? How does it differ from suicides that left empty seats at his school?
Robertson reassured him it would be the very last option as she embarks on a new chemo treatment. Then she explained the safeguards.
Typically, two doctors must confirm that a patient has six months to live. The patient must verbally request it twice with a waiting period that varies by state, and submit a written request with witnesses. At three meetings, a physician assesses the patient to ensure they are able to make an informed decision. The patient can be referred to a psychologist for an assessment if there are concerns.
Patients must take the medication themselves. They lose consciousness within a few minutes and usually die within a few hours.
Eventually the teenager met her eyes. “Granny, I support whatever you choose to do,” he said.
Robertson was glad she had the conversation. “When you just think of the words ‘medical-aid dying,’ a 17-year-old gets stuck on the ‘dying’ part,” she said.
Dr. Jess Kaan is no stranger to the controversy and fixation on the “dying” part. Living on the border between Oregon and Washington, she has worked on over 200 cases between the two states. A quarter of those traveled to Oregon.
Kaan has faced condemnation even from some fellow doctors, who accuse her of violating the Hippocratic oath of “do no harm.” Kaan’s own mother is aghast on religious grounds, and though it’s become a major part of Kaan’s life, the two have only spoken about it once.
For Kaan, it’s a simple argument. She recalled watching a hospitalized patient with Lou Gehrig's disease, or amyotrophic lateral sclerosis, slowly decline, tormented by an inexorable feeling of suffocation, until she died.
“She didn’t die the death she wanted to die,” Kaan said.
“I’m just so convinced that death itself is not the enemy per se,” she said. “For me, the ethical principles upon me are beneficence, in that I feel that the relief of suffering is really what I’m supposed to do as a physician.”
As Drake prepared to fly to Oregon after posting on Facebook, he told his 12-year-old granddaughter that their special word would be “LuLu,” a tease over her obsession with the clothing brand Lululemon. Every time she saw it, he said, that would be him looking down from above.
“The last conversation she had with him was like any normal conversation that she’s ever had with him. And that’s the way she’ll be able to remember him,” said his son, Mitch Drake, 38.
Mitch flew to meet up with his father in Oregon in February. He thanked him for the life he had given him. They said their goodbyes.
Gary Drake drank the medicine as they played his song request: “Toes,” by Zac Brown Band.
He put the cup down and sang.
“I got my toes in the water, ass in the sand
Not a worry in the world, a cold beer in my hand
Life is good today
Life is good today.”
Then he fell asleep.
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