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'I'm Dying, You're Not': Terminally Ill Ask More States for Physician-Assisted Death

— Debates on medical aid in dying bills are playing out in Kentucky, Delaware, Maryland, and Iowa

Ƶ MedicalToday
A photo of Deb Robertson at her Lombard, Illinois home.
(AP Photo/Charles Rex Arbogast)

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. She didn't cry when she learned 2 months ago that the cancerous tumors in her liver were spreading, portending a tormented death.

But later, she received a call. A 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, .

At least that would legalize physician-assisted death. Eight states and Washington, D.C., already allow it, but only for their own residents. permit any qualifying American to travel to their state for the practice. Patients must be at least 18 years old, within 6 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.

"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 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, JD, of . 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 that it's about autonomy and compassion, and having 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 Geoff Sugerman, national campaign strategist for .

Even though physician-assisted death is illegal in most states, a showed that more than two-thirds of Americans support it.

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 . Most are cancer cases; others include heart and respiratory diseases. A third of people prescribed the medication cocktail don't end up using it.

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 6 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 3 years ago Drake wouldn't have had the option. Oregon's residency requirement was and , 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 the group's CEO and president, Kim Callinan, MPP.

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 6 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 3 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 pass away 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.

Jessica Kaan, DO, 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 spoken about it only once.

For Kaan, it's a simple argument. She recalled watching a hospitalized patient with Lou Gehrig's disease, or amyotrophic lateral sclerosis (ALS), slowly decline, tormented by an inexorable feeling of suffocation, until her passing.

"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.

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 cocktail 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.