Marilyn Teitelbaum was determined to have as much fun as she could before taking medication to end her life.
Some of the first signs Teitelbaum had ALS appeared during a vacation to Mexico in 2022. She and her husband, Steven, had taken their grandsons on a trip to Cancun when they noticed Marilyn’s foot was dragging, an early sign of her impending nerve degeneration.
The average patient dies within a few years of diagnosis. What starts as muscle weakness advances to total incapacitation.
“Marilyn didn't want to do that or have the family experience it, so the day that she was diagnosed, she said to the physician that she is not going to go to the end with this,” said Steven Teitelbaum, who has worked as a medical researcher and professor at Washington University in St. Louis for more than 50 years.
Rather than live out the fatal disease, which leads to permanent paralysis, Teitelbaum took another trip, this time to Colorado — one of 10 states, plus Washington, D.C., where physician-assisted dying is legal. Under the laws, physicians can prescribe life-ending medication to terminally ill patients who request it.
Before establishing residency in Colorado, the couple rented an ocean-front house in Hawaii for a week, and the family flew out to join. The grandsons took surfing lessons and played soccer. They took a helicopter tour. They had parties and events where Marilyn gave away her jewelry.
“She was very gracious,” Teitelbaum said. “There was no weeping or feeling sorry for herself or anything like that. It was: How much can I enjoy my family, and particularly my grandchildren and children?”
In Colorado, where she had family, the couple hosted celebrations. A nephew who plays the trumpet brought his band to play for her.
But by the time she took the lethal medication nine months after her diagnosis, Marilyn Teitelbaum’s disease had advanced rapidly. Quickly losing muscle function and no longer able to stand on her own, she chose to take the medication two weeks ahead of schedule.
“It's a gracious way to go, actually. And when Marilyn did die, she could die with grace,” Teitelbaum said. On Jan. 26, 2023, she woke up and had breakfast. About a half dozen of her closest relatives gathered around her. A nephew played the guitar. “And it was just going to sleep,” her husband said.
Missouri is one of at least 25 states this year where lawmakers are considering legislation related to physician-assisted dying, a practice controversial enough that there’s debate over what to call it. Proponents prefer “medical aid in dying,” while opponents insist “physician-assisted suicide” is more forthright.
The American Medical Association takes a stance against physician-assisted suicide as “fundamentally incompatible with the physician’s role as healer,” difficult or impossible to control, and posing serious societal risks, the group’s website said.
A 2024 Gallup poll found 66% of Americans believe doctors should “be allowed by law to assist the patient to commit suicide” when a terminally ill patient in severe pain requests it.
New Mexico, the most recent state to legalize physician-assisted suicide, did so in 2021. Delaware’s Democratic governor vetoed a bill to legalize assisted dying in 2024, and in 2023, Republican Nevada Gov. Joe Lombardo similarly vetoed a legalization bill.
Lawmakers in 18 states are considering legislation to legalize physician-assisted suicide. As in a number of other states, Missouri’s "Marilyn Teitelbaum Death with Dignity Act" has languished without a committee hearing.
“We were unable to secure a Republican sponsor for it,” said Rep. Ian Mackey, D-St. Louis, who introduced the bill this year and last. “Until we can do that, it’s not going to get any traction.”
Momentum to legalize in New York, Illinois and Delaware
Strong political will exists in Illinois, Delaware and New York to move legislation legalizing assisted dying forward, said Elizabeth Armijo, national director of legislative advocacy at Compassion & Choices.
New York lawmakers are taking up the issue again for the 10th consecutive session. Two identical bills are in health committees in their respective chambers.
A 2024 YouGov poll found 64% of New Yorkers support passing the legislation, and another 8% are leaning toward supporting it. The bill is gaining sponsors in the state’s House and Senate quickly, with those in favor of the bill vying for Gov. Kathy Hochul’s support.
Between the two bills, 90 lawmakers have signed on as sponsors “and that number is continuing to grow,” said Corinne Carey of Compassion & Choices. “I am more hopeful than ever that this will be the year the legislature finally passes the bill.”
In the Illinois General Assembly, two bills are progressing, but face opposition from pro-life advocates and medical professionals.
“This can be an emotional issue, and many fallacies circle medical aid in dying,” said Illinois state Sen. Linda Holmes, who co-sponsored one of the measures, said during a Senate executive committee hearing. “I encourage those with misgivings to read the legislation in full to see its criteria and the safeguards that would protect patients, medical professionals, and relatives.”
Last year in Delaware, outgoing Gov. John Carney vetoed a bill to legalize the practice after it had passed the state’s Senate by one vote. A similar measure this year passed the Delaware House and a Senate committee, and now awaits approval from the full Senate.
“So many of these efforts get incredibly close, and then they're disappointing. They're so disappointing for our terminally ill advocates who don't have the luxury of having one more session,” Armijo said. “They don't have the luxury of waiting for another legislative session and so often they really die waiting.”
Bills introduced in states where the practice is legal would amend aspects of the law including waiting time or who qualifies to prescribe the medication. Opponents say the efforts remove safeguards while proponents argue these improve access.
Two bills — one in New Jersey and another in Washington — would, for qualifying patients, waive the wait period between the patient’s first and second required request for the medication.
Bills in Oregon and Vermont would allow certified licensed nurse practitioners and physician assistants, in addition to physicians, to prescribe the medication. A measure in California would remove the Jan. 1, 2031, sunset on the state’s law.
In Montana, a 2009 state Supreme Court ruling permitted the practice; a bill to codify its legality died in March. A competing measure that would make it illegal for doctors to prescribe the medications passed the state Senate but was defeated on the House floor April 9.
“This bill reinforces that life is valuable and should be protected,” said the bill’s sponsor, Montana state Sen. Carl Glimm, during a March 19 hearing in the House Judiciary Committee.
Opponents fear second-tier medicine for terminally ill
As a pathologist, death is a common part of Steven Teitelbaum’s life. With physician-assisted dying, he said it’s crucial that no one making the decision is encouraged by others to do it.
“If that's not dealt with, then the other side has a very compelling argument,” he said.
Assisted-dying laws in the United States follow the basic criteria of the initial Oregon legalization bill. Geoff Sugerman, who helped write Oregon’s Death with Dignity Act, echoed Teitelbaum’s concern.
“It's something that always has to be driven by the patient. The patient is the one who really has to initiate that conversation,” said Sugerman, who now works as the national policy advisor for Death with Dignity, an advocacy group.
Jessica Rodgers grew up in Oregon, the first state to legalize assisted dying in 1997, when the debate over the issue began making headlines. Oregon doctors who supported the law publicly advocated for it. Rogers was 12 when her mother was given six months to live after being diagnosed with ovarian cancer. Her mother met the qualifications for assisted dying.
With her father working two jobs, Rodgers took care of her mother. She remembers one of the doctors in her mother’s oncology practice was an outspoken advocate for the bill that would become Oregon’s Death with Dignity Act.
“As her primary caregiver, it changed how I viewed her doctor's appointments, because I felt as though I needed to protect her from her doctor, and I never wanted her to be alone with her doctor,” Rodgers said.
Her mother lived for three and a half years, long enough to hold her first grandchild, Rodgers said.
Now a social worker who specializes in gerontology, Rodgers has spent the last two decades advocating against physician-assisted suicide. Today she works as the coalitions director at Patients Rights Action Fund.
She fears legalizing assisted death creates a lower standard of care for people who are terminally ill.
The American Academy of Hospice and Palliative Medicine, an industry group, takes a neutral stance on assisted dying, but echoes similar concerns over the practice’s effect on “the perceived or actual integrity of the medical profession,” according to its website.
About 22% of Americans – 74 million people – live in jurisdictions where assisted dying is legal. Between 1998 and 2020, just 5,329 people died using physician-assisted death in the United States. That’s according to a 2022 study published in the Journal of the American Geriatrics Society .
Each state collects data differently making it difficult to analyze trends, according to the study’s author, Elissa Kozlov, an assistant professor at Rutgers University.
Reporters Maya Burney of Belmont University, Aditi Thube of Boston University and Emma Schwichtenberg of the University of Washington contributed to this story.
