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Anguished Parents. Doctors in Tears. Utah’s Long Measles Outbreak Takes a Toll.

SALT LAKE CITY — Ben Dowse hadn’t expected to treat measles when he became a doctor, but there he was, examining a newborn exposed to the virus in the womb. The infected mother had given birth just hours earlier. The hospital had alerted Dowse to the case before delivery, and he’d braced himself for the worst.

Dowse wore a full-body protective suit with a plastic face mask. As a pediatrician in southern Utah, he couldn’t risk getting even a mild infection, because many of his patients are babies too young for measles vaccines or children whose parents choose not to protect them with immunizations. “I went in looking like a scientist in E.T.,” he said.

Measles can cause brain damage, deafness, or death in newborns. If the baby entered the world with a measles rash and fever, Dowse was prepared to give the infant a spinal tap to assess the risk of neurological damage.

Luckily, flushed and crying, the baby looked healthy. To keep it that way, Dowse wanted to inject the baby with concentrated antibodies against the measles virus. To his surprise, the parents objected, promising to give their child “all kinds of vitamin A,” Dowse said. He begged them not to, saying, “You can’t see it on the surface, but the baby’s body is fighting the measles.” They were afraid of vaccines, so Dowse explained that antibodies were different and that they would stop measles from replicating in the infant.

“That shot is going to basically give the baby ammo to fight,” Dowse said.

The parents relented. A couple of days later, they left the hospital with a child who had narrowly skirted an infection that killed many thousands of babies a century ago. Nonetheless, Dowse said he doubted they would be returning for childhood vaccinations to protect their baby against a bevy of illnesses. Like more than a dozen Utah doctors and health officials who spoke with KFF Health News, Dowse has adjusted his expectations.

He is part of a reluctant cohort of medical professionals now on the front line of America’s regressive next chapter in health history, one in which dangerous and preventable diseases return.

“I wish that people could see what I see,” said Nathan Money, a hospital pediatrician in Utah whose eyes welled up with tears as he described children he’s treated for measles struggling to breathe. “This train is going in the wrong direction, and it can feel like a helpless situation, because we’re just not seeing the public messaging and leadership that’s needed to turn this around.”

Since measles was deemed eliminated in the U.S. a quarter century ago, public health workers have extinguished sporadic outbreaks in close-knit, undervaccinated communities with targeted methods: Isolate people with measles and quarantine their contacts to contain the virus. But as vaccination rates drop nationwide, the virus is moving beyond insulated communities, overwhelming public health departments constrained by shoestring budgets. Larger outbreaks, the kind not seen for a generation, have forced health officials into a new paradigm: They have stopped racing to “contain” infections and shifted gears into what they call “mitigation.”

Utah made that transition early this year, once the outbreak hit “a point where you no longer have control over it,” said state epidemiologist Leisha Nolen. By March, measles had been detected in every health jurisdiction in the state and in northern Arizona. More than 950 people have tested positive in the two states since the outbreak began in August, but many people with measles haven’t been tested. A genetic analysis of measles viruses suggested that the true number of cases last year could have been 6.5 times what was known.

Last year under President Donald Trump, U.S. measles cases exceeded 2,000 for the first time since 1992. Six months into 2026, the U.S. has already surpassed that threshold. Prolonged outbreaks exact a toll on children, who have spent days in hospitals for severe infections and missed weeks of school for mild ones. Adults with measles miss work. Parents delay daycare to keep their babies safe. Doctors in Utah have enacted labor-intensive protocols to keep measles from spreading in clinics. Newborns and people with weakened immune systems who have been exposed to the virus receive infusions of concentrated antibodies costing $500 to $1,000. Medical visits for measles can cost more than $33,000 per patient. Health departments spend millions trying to curb infections.

A woman sits at a table in front of a children's playground.
Emilie Morris, a hospital pediatrician in Utah, has cared for multiple unvaccinated children who were severely sick with measles. She’s learning how to communicate with parents who hadn’t expected the virus to cause so much harm. (Amy Maxmen/KFF Health News)

“This is like a snowball that gathers speed as it rolls downhill,” said Emilie Morris, a hospital pediatrician in Salt Lake County and Utah County. A full-throttle campaign to educate communities on the safety of vaccines and the diseases they prevent could turn the situation around, doctors and health officials said. It would require an effort similar to what the anti-vaccine movement has long done in videos, blogs, and podcasts. For example, the anti-vaccine organization that Robert F. Kennedy Jr. founded before taking the helm at the Department of Health and Human Services, Children’s Health Defense, visits vaccine-hesitant communities, produces movies, and has bought advertisements on Facebook that downplay the threat of viruses while wildly exaggerating the risk of vaccine side effects. Kennedy’s words and actions as health secretary are adding to parents’ doubt.

After the development of vaccines and antibiotics in the mid-1900s, virologist and Nobel laureate Frank Macfarlane Burnet wrote, “One can think of the middle of the twentieth century as the end of one of the most important social revolutions in history, the virtual elimination of the infectious diseases as a significant factor in social life.”

He couldn’t have imagined what was coming.

‘Year of Sickness’

A view of rocky formations along a road leading into a town in southwest Utah.
A view of St. George, a city in southwest Utah that’s been hit hard by an ongoing measles outbreak that started in August. Nearly 40% of the state’s cases have occurred in the region. (Amy Maxmen/KFF Health News)

In communities nestled among the red sandstone cliffs and riparian forests of southern Utah, measles took hold last summer. At the main school in Hildale, a town along the Arizona border, just 30% of kindergartners are considered adequately immunized by Utah’s health department, meaning they’ve gotten recommended vaccines against measles, tetanus, polio, and more. Exemptions from childhood vaccine requirements are easily acquired in the state: Parents need only claim personal, religious, or medical reasons.

Many people in Hildale and the surrounding towns are connected to the Fundamentalist Church of Jesus Christ of Latter-Day Saints, a sect that has been leery of the government since a police raid in 1953 separated polygamous parents from their children. Shirlee Draper, a southern Utah resident who grew up in the faith, said they became ever more isolated in the early 2000s under the leadership of Warren Jeffs. Before he was sentenced to life in prison for sexual assault against minors, Jeffs instructed his followers to withdraw from public schools and mainstream medicine.

“Growing up, we all got our vaccines,” said Draper, who left the group during Jeffs’ reign. “It wasn’t until Warren Jeffs came along that there started to be more and more resistance.”

After Jeffs went to prison, many people left the faith but remained concerned about vaccines because of online misinformation, such as claims that the shots are toxic. Today a small shop in Hildale sells mouth sprays and oral drops professing to detoxify vaccines. Water, glycerin, and “whole grain alcohol” are listed as ingredients in one called Vxx-Dtx.

A mother who KFF Health News agreed not to name, because she fears stigmatization, said she considered getting her kids vaccinated when schools in southwest Utah started seeing measles cases last summer. She had split from the fundamentalist group but still worried about vaccines giving her children autism or other complications. Large studies published in top-tier scientific journals have refuted a link between vaccines and autism, but the anti-vaccine movement has kept the notion alive.

Then the woman’s son told her that his classmate had a rash and spit on him, she said. A few days later, he fell ill with a fever, followed by vomiting, diarrhea, and a head-to-toe rash.

“He felt downright sick for 10 to 14 days,” the woman said. “It was hard to see the end of the tunnel.”

Then her daughters came down with measles. She had a fleeting case, too, even though she had been vaccinated as a child. Breakthrough infections tend to be mild and are relatively rare. Only 4% of 4,300-plus U.S. cases reported this year and last have been people who’ve had two doses of the measles, mumps and rubella vaccine.

By the time the family recovered, the son had missed nearly three weeks of school, the daughters a month, and the mother had postponed an important family gathering because she didn’t want to spread infections. “I just got my youngest’s missed-school report and it’s super high,” she said. “This is the year of sickness.”

A photo of vaccines stored in a refrigerator.
The Southwest Utah Public Health Department stocks vaccines against measles, whooping cough, tetanus, hepatitis B, and other diseases. (Amy Maxmen/KFF Health News)

The woman said she regretted not getting her kids vaccinated when the outbreak started. She said she knows about 30 people who have fallen sick with the measles. Except for a few who needed medical care, they haven’t been tested. “I bet there’s been thousands of cases,” she said.

Measles doesn’t have a cure. She and others have tried to ease symptoms with cod liver oil, vitamin C, zinc, and “essential oils,” plant extracts long used in folk medicine that have become a lucrative industry in Utah. People in southwest Utah are trying a lot of things: One resident sells homemade lotion on Facebook, writing, “Breastmilk & Honey has been a life saver for the measles rash.”

Beyond Containment

The outbreak may have started among a fundamentalist community, but it’s spread far beyond because Utah’s vaccination rates have dropped steadily since the covid pandemic. Fewer than 80% of kindergartners were adequately immunized in the 2024-25 school year in southwest Utah, with only 87% adequately immunized in the state as a whole — far below the 95% threshold required for herd immunity.

Several Utahns told KFF Health News that “alternative health” or “wellness” drives the trend, rather than religion. The state has a thriving supplement industry, worth $6.1 billion in 2023, aided by deregulatory policies supported by the late Utah senator Orrin Hatch and a high concentration of people who earn income from multilevel marketing. These networks of people sell supplements, essential oils, peptides, and other alternative therapies on social media, YouTube, and podcasts, according to scholarly articles and industry analyses.

Alternative health isn’t necessarily anti-vaccine, but many people who sell unconventional remedies online and in podcasts deride vaccines and mainstream medicine.

“People are suspicious, and it’s well founded,” Draper said. She described dismissive doctors, exorbitant medical bills, hospital systems that put profits over care, and pharmaceutical companies that drove opioid addiction. Communities already wary of government authorities are poised to interpret failings in American healthcare as signs that medical authorities aren’t to be trusted, either, she said.

“Across America, we have entire populations who find safety in clinging to whatever confirms their deeply held beliefs,” she said.

A mistrustful disposition gave way to covid conspiracy theories in 2020 and 2021. In southwest Utah, for example, a pickup truck tricked out with digital billboards showed up to covid vaccination sites to advertise Plandemic, a 26-minute viral video rife with conspiratorial claims, including that masks “activate” the coronavirus and that global elites planned covid-19 to control the population. Misinformation added fuel to anger about public health rules, and there was political backlash under the umbrella of a largely Republican “medical freedom” movement. Utah enacted laws reining in public health, including one that eases exemptions to childhood vaccinations and another that prohibits most employers from requiring vaccines.

In the wake of the covid backlash, health officials tread lightly. Rather than enforce containment measures, “we give our advice and focus on personal responsibility,” said David Heaton, public information officer at the Southwest Utah Public Health Department.

A woman stands outside a building. A sign next to her reads, "288 Department of Health and Human Services."
Utah state epidemiologist Leisha Nolen says that with a larger budget she would invest in connecting with communities. “We have a scientific solution,” she says about measles, “but we need a societal solution, too.” (Amy Maxmen/KFF Health News)

One of the most contagious diseases in the world, measles spreads with astonishing speed among the unvaccinated. One meticulous study of a New York school outbreak in 1974 found that a second-grader with measles infected 28 other students in 14 classrooms because measles can spread through ventilation systems.

As cases doubled then quadrupled in southern Utah, the regional health department couldn’t keep up with calling the contacts of everyone infected. It shifted its efforts to announcements guiding the public at large. For example, it asks people to call before showing up to clinics with measles symptoms. Still, patients in plenty of hospitals have been exposed. For example, when parents brought a sick, unvaccinated child to a large pediatric hospital in Utah in September, they shared the space with 11 infants too young to be vaccinated. Doctors rushed to give the babies infusions of antibodies and they remained healthy, according to a recent report.

On the radio and in posts on social media, Heaton warns that measles is spreading and that vaccines are the best defense. “If you’re not immunized and you’re anywhere in public,” Heaton said, “you’re fair game for this virus.”

The department doesn’t have the capacity to talk with people directly in the five counties it serves. For a few years, it leaned on community health workers who went to churches, town halls, and other gathering places, listening to people’s concerns and telling them what the science said about covid, vaccines, and other matters of public health. But these workers were laid off early last year, after the Trump administration clawed back more than $12 billion in federal public health grants to states.

“We were starting to get a little bit of traction,” Heaton said of the community workers. “And then we lost all of our team.”

The department offers free measles vaccines to children, but uptake is slow. Nursing director Mindy Bundy said that when she started the job 20 years ago, demand was so high that she would give parents tickets while they waited, as if they were crowding around a deli counter.

“Now even in an outbreak,” she said, “we aren’t seeing a huge increase of people wanting vaccination.”

A photo of a nurse standing by a folding table inside of a school.
Anna Fajardo, a public health nurse, offers vaccines at a school registration event in Milford, in southwest Utah. A few mothers trickled in to get their children immunized or to find out their child’s vaccination status. (Amy Maxmen/KFF Health News)

As officials tried to do the best they could, the outbreak spread north, hopping from one undervaccinated community to the next. When health officials in Utah County spoke with people who had tested positive, they often had no connection to other known cases. “Pretty quickly, we started to lose the links,” said Michael Leman, the county health department’s nursing director. Contact tracing, the cornerstone of containment, was failing.

Every week, the state health department posted a growing list of locations on its website — a Trader Joe’s, a Mormon temple, an aquarium, preschools — that people had visited while contagious. But many people who tested positive hadn’t been to those places, Leman said. “They could have gotten it at Walmart. They could have gotten it walking through a mall,” he said. “I mean, just anywhere in the public they could have been exposed.”

In February, high school students throughout Utah tested positive after a state wrestling tournament at Utah Valley University in Orem. A dashboard monitoring measles viruses in wastewater lit up with notifications around the state. “Wrestling really feels like our turning point,” said Nicholas Rupp, communications director at the Salt Lake County Health Department.

A photo of an LDS temple: a large white church. People are gathered in front of it, some of them holding umbrellas to protect from the sun.
The new Lindon Utah Temple, belonging to the Church of Jesus Christ of Latter-Day Saints, was one of many locations listed as a potential measles exposure site in April by the Utah Department of Health and Human Services. (Amy Maxmen/KFF Health News)
A photo of a Trader Joe's parking lot. Mountains are seen peaking out from behind the building.
A Trader Joe’s in Orem, Utah, was also listed as a potential measles exposure site that month. (Amy Maxmen/KFF Health News)
A photo of a university building with several electric scooters parked in front of it.
A science building at the University of Utah in Salt Lake City was also among the potential exposure sites listed in April. (Amy Maxmen/KFF Health News)
An exterior shot of a Utah Valley University building with mountains seen behind it.
Many measles cases traced back to a high school wrestling tournament at Utah Valley University in Orem in February. (Amy Maxmen/KFF Health News)

Salt Lake County’s shift from containment to mitigation meant prioritizing high-risk situations and relaxing control everywhere else. When a student has a confirmed case, for example, health officials meet with the school nurse to figure out which kids are most vulnerable. Unvaccinated children in the same classroom as someone infected are asked to stay home for 21 days, but those in other classrooms might not be, said Melanie Crossland, an epidemiologist at the Salt Lake health department. Some schools with high vaccination rates have opted to monitor student temperatures daily instead of requesting quarantines. One school created a separate space for the unvaccinated.

Crossland said such bespoke strategies entail a “huge” amount of effort but have staved off blowback that deflated her during covid.

“We give everything when we’re here,” she said, “but the days of killing ourselves, when legislatively no one is going to give us any help, are done.”

Daycare Dilemma

The outbreak has lasted so long that some children who have recovered from measles have since been hospitalized for what should be mild illnesses from common bugs, said Kerri Smith, a hospital pediatrician in southwest Utah. Measles can erase the immune system’s memory, impairing a body’s ability to fight other viruses. “It’s making children very susceptible to getting sick again,” Smith said.

Her eyes were bloodshot, and she looked drained from a week of long shifts. Since the outbreak began, she’s treated more than a dozen babies and children severely sick from measles.

“They’re usually admitted to the hospital with measles pneumonia, so they’re struggling to breathe, pulling for air below their ribs,” she said. “High fevers, 104 to 105, absolutely miserable, extremely fatigued, really dehydrated with sunken eyes.” Most children fully recover from measles, but a fraction develop permanent hearing loss, a small percentage die, and in rare cases, measles kills a person years after the infection.

No one has died so far in Utah’s outbreak. And barring that tragic outcome, Smith and other doctors said, some parents fail to grasp the gravity of measles, even as their own children have tubes inserted into their small nostrils to deliver oxygen. Despite repeated warnings, doctors said, some unvaccinated family members of patients — who could be contagious — walk around the hospital while visiting their loved one. This means the waiting room, the elevator, the cafeteria, and other places need to be shut down for cleaning, and vulnerable people alerted.

“People don’t realize how easily this spreads,” Smith said.

Morris, the pediatrician working in two counties, recalled a conversation with a nonchalant father who didn’t seem to understand the need for quarantine. “I know this is an inconvenience to you,” she said. “It’s also a huge inconvenience to the parent who has an infant who could be severely impacted by this disease.”

On top of feeling depleted, doctors with young children said they are anxious. Emily Chin, a physician in Salt Lake County, worries she’ll bring measles home to her newborn. One evening, she sat in her garage after caring for a child with a rash. The patient’s measles test was still being processed, so Chin isolated herself in a room for the night, wearing an N95 mask instead of holding her infant.

A photo of a baby in a carrier sleeping. Next to it is a play mat and a chair.
Emily Chin’s 4-month-old, sleeping here at home, is too young to be vaccinated, and Chin, a doctor in Salt Lake County, Utah, worries that she might acquire measles at work and pass it to him. (Amy Maxmen/KFF Health News)

Like many mothers in Utah, Chin plans to give her baby an early dose of the measles vaccine at 6 months old because of the outbreak, in addition to two doses at ages 1 and 4. Several mothers said they avoid travel and public places because they fear their babies could be infected. Some are delaying daycare. Others, like Kandace Hyland, a marketing director in Salt Lake County, don’t have that option.

Hyland was shocked when her daycare told her that it didn’t track the vaccine status of staff, even amid the outbreak. In March, she posted an online petition calling for the state to require daycare staff to be vaccinated against the measles when the virus is spreading. Even if daycare staff file for vaccine exemptions, she said, parents could at least find out what portion of their babies’ caretakers pose a life-threatening risk.

Hyland sent her idea to the state health department. Nolen, the state epidemiologist, said she agreed with the concern, and was “talking with the division of licensing about the issue,” in an email shared with KFF Health News. Hyland also wrote the Division of Licensing and Background Checks. In an email, its director, Shannon Thoman-Black, replied that the division does “not have the legislative authority to implement a mandate.”

“They always talk about parents’ choice,” Hyland said. “But I don’t feel like I have a really good ‘parents’ choice’ right now.”

Measles’ Comeback

The U.S. will almost certainly lose its measles elimination status this year or next, but it could be regained if political leadership backed nationwide campaigns to boost confidence in vaccines, said Demetre Daskalakis, a former director of the Centers for Disease Control and Prevention’s national immunization center and now the chief medical officer at the Callen-Lorde community health center in New York.

“Under Secretary Kennedy’s leadership, that’s unlikely to happen,” he said. “We’re going back to a pre-vaccine era.”

A sign in front of a hospital reads, "Please tell us immediately if you are not vaccinated against Measles and have the following symptoms: fever and two or more of the below — cough, rash, recently exposed to measles, runny nose, red and runny eyes, white spots in mouth."
A sign outside a hospital in southwest Utah warns people who haven’t been vaccinated against measles to wait outside if they have a fever and other symptoms, such as coughing or a runny nose. Vulnerable people, including infants too young for vaccination, have been exposed to measles at hospitals and clinics. (Amy Maxmen/KFF Health News)

HHS spokesperson Emily Hilliard defended the secretary and his agency in an email, writing that the CDC has “surged resources” to contain measles outbreaks. “The CDC, HHS principles and the Secretary have been vocal that the MMR vaccine is the best way to protect yourself against measles,” she said.

Kennedy’s words and actions suggest otherwise. He’s said that the measles vaccine leads to “deaths every year,” which is not true. He continues to tout a potential link between autism and vaccines, no matter how many studies conclude there is none. And he oversaw abrupt changes to the recommended childhood vaccine schedule, a move medical societies called dangerous and not backed by science. A federal judge blocked those changes in March, but Trump recently issued an executive order to reexamine the schedule.

“It’s been confusing for the public,” said Dorothy Adams, executive director of the Salt Lake County Health Department.

In May, Kennedy met with Republican Utah Gov. Spencer Cox, who has said little about the state’s ongoing outbreak. Kennedy praised Utah’s action on Make America Healthy Again priorities, such as banning fluoride in public drinking water and easing restrictions on raw milk sales, according to Salt Lake City’s Deseret News. Cox declined to comment for this article.

Meanwhile, the chronically depleted U.S. public health system has been further weakened by the Trump administration’s cuts and delays to public health grants.

“If you’re in the thick of it and you don’t know if you will be reimbursed, you adjust your response,” said Angela Dunn, a doctor and former Utah state epidemiologist. “This outbreak is a perfect storm of disinformation, trauma from the covid pandemic, and the drop in funding.”

Measles isn’t the only preventable malady making a comeback. As children played nearby in a sun-speckled park in Salt Lake City, Morris talked about a baby in the intensive care unit who was bleeding uncontrollably after a fall. The baby’s parents had refused an injection of vitamin K that helps blood clot in newborns. As they fretted over their infant, Morris said, she felt awful for them and regretted not being able to overcome mistrust in basic, lifesaving interventions. She had the same swirl of emotions when an unvaccinated toddler in her care recently died of whooping cough.

“I was one of the only people in the room with the nurse when the child coded,” she said with tears in her eyes. “You think, ‘I wish this child was vaccinated,’ but it’s hard because I also see how much grief these parents are holding.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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By September, Nearly a Third of Americans Will Live in States With Legal Aid in Dying

Jules Netherland traveled from her home in the Bronx to the New York state Capitol in Albany several times in the past few years, hoping to persuade the legislature to pass a medical aid in dying bill, allowing terminally ill patients to end their lives with a lethal prescription.

She spoke at rallies. With other members of the advocacy organization Compassion & Choices, she visited legislators’ offices. In 2024, as the state Assembly was debating the aid in dying bill, she helped unfurl a banner in the chamber gallery that read, “Stop the Suffering.”

Her activism was becoming difficult. Netherland, who is 59 and works for a nonprofit, was diagnosed with breast cancer in 2019. “I did a full year of aggressive treatment,” she said. “Chemotherapy. A mastectomy. Radiation treatment every weekday for five weeks. Six months of two oral medications.”

She recovered and felt well until the cancer returned a few years later. Although metastatic breast cancer is incurable, drugs are keeping her disease at bay for now. Netherland feels fortunate but also fatigued, and she contends with brain fog, gastrointestinal symptoms, and joint pain.

“My energy is really limited,” she said.

As she emailed and called legislators, Netherland feared she might die before the aid in dying bill — first introduced in New York in 2016 — could become law.

‘A Breakthrough Moment’

On June 9, 2025, after the Assembly approved the bill, Netherland was in the state Senate chamber, watching the aye votes mount, and seeing it pass. Gov. Kathy Hochul signed an amended version in February; it is scheduled to take effect Aug. 5.

A similar law is slated to take effect in September in Illinois, which would become the 13th state (plus the District of Columbia) where medical aid in dying is legal.

“A breakthrough moment,” said Kevin Díaz, president of Compassion & Choices, which has spearheaded the long campaign for such laws. After almost 30 years — Oregon’s law, the first in the country, was enacted in 1997 — the addition of two populous states means that almost a third of Americans will live in one where medical aid in dying is legally available. “It shows that there’s broad support for this model,” Díaz said.

Polls consistently back that claim. A Pew Research Center survey last spring found that almost two-thirds of respondents didn’t consider the practice “morally wrong,” either because they thought it was acceptable or not a moral issue. Support crossed many political and religious lines: A narrow majority of Republicans and 76% of Democrats both found “physician-assisted death” (also sometimes called “physician-assisted suicide”) permissible; so did most Catholics, Jews, and nonevangelical white Protestants.

In New York, a Siena poll found that 54% of respondents supported aid in dying, including majorities of men and women, of all age groups, and of city, suburban, and upstate residents. A plurality of Latinos supported it; Black respondents narrowly opposed it.

Passing these laws has grown somewhat easier, said Thaddeus Pope, a bioethicist and professor at Mitchell Hamline School of Law in St. Paul, Minnesota, who tracks such policies. “You can say, ‘We have 10 years in California, 18 years in Washington, and 29 years in Oregon, and nothing bad has happened.’ It becomes more accepted.”

‘You Need A, B, and C’

Yet legalizing medical aid in dying, or MAID, has been and remains a long, contentious process. Catholic leadership and many disability organizations staunchly oppose it. (Pope Leo XIV personally asked Illinois Gov. JB Pritzker not to sign the bill.)

The American Medical Association says that “physician-assisted suicide is fundamentally incompatible with the physician’s role as healer” and poses “serious societal risks,” although a number of state medical organizations have opted to remain neutral or, as in New York, to support passage.

The Patients’ Rights Action Fund, through a sister organization, has lawsuits pending or on appeal in California, Delaware, and Colorado, arguing that aid in dying laws discriminate against people with disabilities by steering them toward physician-assisted suicide instead of treatment.

“This is a litigation strategy we’ve developed to ultimately get to the Supreme Court,” said Matt Vallière, the group’s executive director, who declined to say whether it would sue to block the Illinois and New York laws.

Even when aid in dying laws succeed, using them can prove challenging. In every state (except Montana, where it became legal through a court decision, so there is no statute governing eligibility), aid in dying is available only to people with incurable illnesses who are expected to die within six months.

It typically involves oral and written requests to two doctors, with mandated waiting periods between requests. Patients must have the mental capacity to make the decision, which disqualifies those with dementia, and they must ingest the medication without assistance. (An amendment Hochul insisted on adds a psychologist or psychiatrist to the process.)

All but two states require patients to be residents. Oregon and Vermont scrapped their residency requirements to settle lawsuits brought by Compassion & Choices. (Courts ruled against a similar suit in New Jersey.)

Moreover, any doctor, hospital, or healthcare system can legally decline to provide aid in dying, and religiously affiliated institutions often opt out. Those that participate can add their own requirements.

“The state can say ‘You need A, B, and C,’ and Columbia-Presbyterian can say, ‘We also want D, E, and F,’” said Pope, the Minnesota bioethicist.

Hotly Debated, Seldom Used

Perhaps these restrictions, or a lack of public awareness, help explain why, despite the headlines and fervent debates, the number of people who actually use the law is tiny in every state — usually 1% or fewer of the deaths recorded annually. The support for giving patients this kind of autonomy at the end of life remains widespread, but the desire to personally exercise it apparently is not.

Still, after studies showed that many patients seeking MAID were dying before they could complete the process, the trend has been to loosen restrictions. California cut its 15-day waiting period to 48 hours; New Mexico allows physician assistants and advanced-practice nurses to write prescriptions along with doctors.

“Most states have now amended their laws two or three times,” Pope said. “We have liberalized.” Telehealth can also facilitate access to participating doctors.

Compassion & Choices is planning legal challenges to end residency requirements in additional states, Díaz said. It is also considering how to “make inroads in jurisdictions with a much different cultural and political environment,” he added, mentioning Florida and other Southern states.

Medical aid in dying represents a shift in power, Díaz said. “The person who has to bear the burden of the suffering should have the ability to decide when it’s enough,” he added.

Anne Gurnett Bander, 72, a retired research scientist in Carmel, New York, cared for her husband for four years as ALS — the relentlessly disabling neurological disorder also known as Lou Gehrig’s disease — rendered him bedridden and dependent on feeding and breathing tubes. “By the time he died, the only thing he could do was nod his head,” she recalled.

So being diagnosed with ALS herself last year was “my worst possible nightmare,” Gurnett Bander said. She was planning to fly to Switzerland, where the nonprofit organization Dignitas provides medical aid in dying, when she learned about the New York bill and began speaking publicly in support of it, her voice faltering as her illness advanced.

Gurnett Bander and Netherland say they’re not certain they’ll use lethal drugs to end their lives as their symptoms intensify. Not infrequently, patients complete the necessary steps, secure the prescribed medication, decide they don’t need it after all, and die of their diseases. But both women insist that the choice should be theirs.

“It can offer so much peace of mind,” Netherland said. “I thought, ‘People should have this option.’ Now, they will.”

The New Old Age is produced through a partnership with The New York Times.

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