The question has never been exactly how Ann Picha-Lillard died on Nov. 19, 2022: She succumbed to respiratory failure after an infection put too much strain on her weakened lungs. She was 65.

For Tim Lillard, the question has been why.

Lillard had been in the hospital with his wife every day for a month. Nurses in the intensive care unit had told him they were short-staffed, and were constantly rushing from one patient to the next.

Lillard tried to pitch in where he could: brushing Ann’s shoulder-length blonde hair or flagging down help when her tracheostomy tube gurgled — a sign of possible respiratory distress.

So the day he walked into the ICU and saw staff members huddled in Ann’s room, he knew it was serious. He called the couple’s adult children: “It’s Mom,” he told them. “Come now.”

All he could do then was sit on Ann’s bed and hold her hand, watching as staff members performed chest compressions, desperately trying to save her life.

A minute ticked by. Then another. Lillard’s not sure how long the CPR continued — long enough for the couple’s son to arrive and take a seat on the other side of Ann’s bed, holding her other hand.

Finally, the intensive care doctor called it and the team stopped CPR. Time of death: 12:37 p.m.

Lillard didn’t know what to do in a world without Ann. They had been married almost 25 years. “We were best friends,” he said.

Just days before her death, nurses had told Lillard that Ann could be discharged to a rehabilitation center as soon as the end of the week. Then, suddenly, she was gone. Lillard didn’t understand what had happened.

Lillard said he now believes that overwhelmed, understaffed nurses hadn’t been able to respond in time as Ann’s condition deteriorated. And he has made it his mission to fight for change, joining some nursing unions in a push for mandatory ratios that would limit the number of patients in a nurse’s care. “I without a doubt believe 100% Ann would still be here today if they had staffing levels, mandatory staffing levels, especially in ICU,” Lillard said.

Last year, Oregon became the second state after California to pass hospital-wide nurse ratios that limit the number of patients in a nurse’s care. Michigan, Maine, and Pennsylvania are now weighing similar legislation.

But supporters of mandatory ratios are going up against a powerful hospital industry to kill those efforts. And hospitals and health systems say any staffing ratio regulations, however well-intentioned, would only put patients in greater danger.

Putting Patients at Risk

By next year, the United States could have as many as 450,000 fewer nurses than it needs, according to . The hospital industry , an aging workforce, a large patient population, and an insufficient pipeline of new nurses entering the field.

But nursing unions say that’s not the full story. There are now in the country, more than ever before.

The problem, the unions say, is a hospital industry that’s been intentionally understaffing their units for years in order to cut costs and bolster profits. The unions say there isn’t a shortage of nurses but a shortage of nurses willing to work in those conditions.

The nurse staffing crisis is now affecting patient care. The number of Michigan nurses who say they know of a patient who has has nearly doubled in recent years, according to a Michigan Nurses Association survey last year.

Just months before Ann Picha-Lillard’s death, nurses and doctors at the health system where she died had asked the Michigan attorney general to investigate staffing cuts they believed were , including patient deaths, according to The Detroit News.

But Lillard didn’t know any of that when he drove his wife to the hospital in October 2022. She had been feeling short of breath for a few weeks after she and Lillard had mild covid infections. They were both vaccinated, but Ann was immunocompromised. She suffered from rheumatoid arthritis, a condition that had also caused scarring in her lungs.

To be safe, doctors at wanted to keep Ann for observation. After a few days in the facility, she developed pneumonia. Doctors told the couple that Ann needed to be intubated. Ann was terrified but Lillard begged her to listen to the doctors. Tearfully, she agreed.

With Ann on a ventilator in the ICU, it seemed clear to Lillard that nurses were understaffed and overwhelmed. One nurse told him they had been especially short-staffed lately, Lillard said.

“The alarms would go off for the medications, they’d come into the room, shut off the alarm when they get low, run to the medication room, come back, set them down, go to the next room, shut off alarms,” Lillard recalled. “And that was going on all the time.”

Lillard felt bad for the nurses, he said. “But obviously, also for my wife. That’s why I tried doing as much as I could when I was there. I would comb her hair, clean her, just keep an eye on things. But I had no idea what was really going on.”

Finally, Ann’s health seemed to be stabilizing. A nurse told Lillard they’d be able to discharge Ann, possibly by the end of that week.

By Nov. 17, Ann was no longer sedated and she cried when she saw Lillard and her daughter. Still unable to speak, she tried to mouth words to her husband “but we couldn’t understand what she was saying,” Lillard said.

The next day, Lillard went home feeling hopeful, counting down the days until Ann could leave the hospital.

Less than 24 hours later, Ann died.

Lillard couldn’t wrap his head around how things went downhill so fast. Ann’s underlying lung condition, the infection, and her weakened state could have proved fatal in the best of circumstances. But Lillard wanted to understand how Ann had gone from nearly discharged to dying, seemingly overnight.

He turned his dining room table into a makeshift office and started with what he knew. The day Ann died, he remembered her medical team telling him that her heart rate had spiked and she had developed another infection the night before. Lillard said he interviewed two DMC Huron Valley-Sinai nurse administrators, and had his own doctor look through Ann’s charts and test results from the hospital. “Everybody kept telling me: sepsis, sepsis, sepsis,” he said.

Sepsis is when an infection triggers an extreme reaction in the body that can cause rapid organ failure. It’s one of the in U.S. hospitals. Some experts say are preventable, while others say is far lower.

when sepsis is fast, which requires careful attention to small changes in vital signs. One study found that for every additional patient a nurse had to care for, the mortality rate from sepsis .

Lillard became convinced that had there been more nurses working in the ICU, someone could have caught what was happening to Ann.

“They just didn’t have the time,” he said.

DMC Huron Valley-Sinai’s director of communications and media relations, Brian Taylor, declined a request for comment about the 2022 staffing complaint to the Michigan attorney general.

Following the Money

When Lillard asked the hospital for copies of Ann’s medical records, DMC Huron Valley-Sinai told him he’d have to request them from its .

Like so many hospitals in recent years, the Lillards’ local health system had been absorbed by a series of other corporations. In 2011, the Detroit Medical Center health system was , which was backed by the private equity company Blackstone Group.

Two years after that, in 2013, Vanguard itself was , a for-profit company based in Dallas that, , operates 480 ambulatory surgery centers and surgical hospitals, 52 hospitals, and approximately 160 additional outpatient centers.

As health care executives face increasing pressure from investors, nursing unions say hospitals have been intentionally to and . Also, insurance reimbursements incentivize keeping nurse staffing levels low. “Hospitals are not directly reimbursed for nursing services in the same way that a physician bills for their services,” said , an associate professor of nursing in the at the University of Pennsylvania. “And because hospitals don’t perceive nursing as a service line, but rather a cost center, they think about nursing as: How can we reduce this to the lowest denominator possible?” she said.

Lasater is a proponent of mandatory nurse ratios. “The nursing shortage is not a pipeline problem, but a leaky bucket problem,” she said. “And the solutions to this crisis need to address the root cause of the issue, which is why nurses are saying they’re leaving employment. And it’s rooted in unsafe staffing. It’s not safe for the patients, but it’s also not safe for nurses.”

A Battle Between Hospitals and Unions

In November, almost one year after Ann’s death, Lillard told a room of lawmakers at the Michigan State Capitol that he believes the could save lives. The health policy committee in the Michigan House was holding a hearing on the proposed act, which would limit the amount of mandatory overtime a nurse can be forced to work, and require hospitals to make their staffing levels available to the public.

Most significantly, the bills would require hospitals to have mandatory, minimum nurse-to-patient ratios. For example: one nurse for every patient in the ICU; one for every three patients in the emergency room; a nurse for triage; and one nurse for every four postpartum birthing patients and well-baby care.

Efforts to pass mandatory ratio laws failed in last year after facing opposition from the hospital industry. In Minnesota, the Minnesota Nurses Association accused the Mayo Clinic of using “”: Mayo had told lawmakers it would in investment from the state if mandatory ratio legislation passed. Soon afterward, lawmakers from the legislation.

While Lillard waited for his turn to speak to Michigan lawmakers about the Safe Patient Care Act in November, members of the , which says it represents some , told lawmakers that its units were dangerously understaffed. They said critical care nurses were sometimes caring for up to 11 patients at a time.

“Last year I coded someone in an ICU for 10 minutes, all alone, because there was no one to help me,” said the nurses association president and registered nurse , reading from another nurse’s letter.

“I have been left as the only specially trained nurse to take care of eight babies on the unit: eight fragile newborns,” said , a registered nurse from the Grand Blanc area of Michigan.

said she has left full-time emergency room nursing, a job she believes is her calling. After her friend died in the hospital where she worked, she was left wondering whether understaffing may have contributed to his death.

“If the Safe Patient Care Act passed, and we have ratios, I’m one of those nurses who would return to the bedside full time,” Parker told lawmakers. “And so many of my co-workers who have left would join me.”

But not all nurses agree that mandatory ratios are a good idea. 

While the supports enforceable ratios as an “essential approach,” that organization’s does not, saying there may not be enough nurses in the state to satisfy the requirements of the Safe Patient Care Act.

For some lawmakers, the risk of collateral damage seems too high. State Rep. said he worries that mandating ratios could backfire.

“We’re going to severely hamper health care in the state of Michigan. I’m talking closed wards because you can’t meet the ratio in a bill. The inability for a hospital to treat an emergent patient. So it feels kind of to me like a gamble we’re taking,” said Filler, a Republican.

Michigan hospitals are already struggling to fill some , according to the . That association says that complying with the Safe Patient Care Act would require hiring .

Every major health system in the state opposing mandatory ratios, saying it would force them to close as many as .

Lillard watched the debate play out in the hearing. “That’s a scare tactic, in my opinion, where the hospitals say we’re going to have to start closing stuff down,” he said.

He doesn’t think legislation on mandatory ratios — which are still awaiting a vote in the Michigan House’s health policy committee — are a “magic bullet” for such a complex, national problem. But he believes they could help.

“The only way these hospitals and the administrations are gonna make any changes, and even start moving towards making it better, is if they’re forced to,” Lillard said.

Seated in the center of the hearing room in Lansing, next to a framed photo of Ann, Lillard’s hands shook as he recounted those final minutes in the ICU.

“Please take action so that no other person or other family endures this loss,” he said. “You can make a difference in saving lives.”

Grief is one thing, Lillard said, but it’s another thing to be haunted by doubts, to worry that your loved one’s care was compromised before they ever walked through the hospital doors. What he wants most, he said, is to prevent any other family from having to wonder, “What if?”

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“Patients tell me, ‘Doctor, why are you stopping me from getting the care that I need?’” said Crissman, an OB-GYN who provides abortions as part of her practice and is also an assistant professor at the University of Michigan. “The answer is that Prop 3 made access to abortion care a right in Michigan. But these [other] laws remain on the books.”

Ever since the Supreme Court overturned Roe v. Wade, abortion patients have traveled to Michigan in record numbers for care. Voters passed what’s known as last November, enshrining abortion rights in the state’s constitution. But it can still be difficult to get abortion care in Michigan, and even patients who have secured appointments are regularly , doctors say.

That’s because of remaining legal restrictions, including an informed consent form that must be printed and signed 24 hours before an appointment begins.

This fall, Democrats in Michigan pledged to change those older state laws. They introduced the which would repeal the state’s 24-hour mandatory waiting period, get rid of the informed consent form, allow Medicaid to cover abortions for low-income patients, and make it easier for private insurance to cover abortions. The legislation would also lift regulations on abortion clinics that advocates say are unnecessary and burdensome.

The time is ripe, Democrats say. Since the 2022 election, the party controls both chambers of the legislature and the governorship, positioning them to pass what they consider a landmark victory for reproductive health.

But now that legislation is stalled — not because of opposition from the Republican minority, but because of dissension within the Democrats’ ranks. Michigan is one of the few remaining Midwestern states where abortion remains legal, so Democrats’ efforts to make the procedure more accessible in the state will have wide-ranging consequences.

Pre-Visit Paperwork Requires Internet Access, a Printer, and Exact Timing

Crissman has a request for anyone who thinks Michigan’s 24-hour mandatory waiting period and informed consent form laws are reasonable: See if you can figure them out.

“Try to figure out what you’re supposed to print. See if you get it right,” said Crissman, “because every day I see patients who’ve driven five hours for abortion care. And they haven’t gotten it right.”

A pamphlet distributed to patients relies heavily on a Q&A format that appears focused on helping them navigate potential difficulties during a pregnancy. One question reads: “How am I supposed to eat healthy food when it costs so much?” The answer: Try food stamps. Q: “What if my house or apartment is in an unsafe neighborhood?” A: Have a “safety plan in mind” and “lock your doors.”

The pamphlet features pictures of smiling pregnant women cradling their bellies and beaming parents holding sleeping newborns. At a statehouse hearing last month, Sarah Wallett, chief medical operating officer of , said state law mandates these materials be provided to all patients, regardless of their circumstances. One patient was ending a much-wanted pregnancy because of a fetal “anomaly incompatible with life,” Wallett said. “She asked me with tears in her eyes why I had forced her to look at information that wasn’t relevant to her, that only made this harder for her and her family going through this heartbreak. I could only reply, ‘Because Michigan law requires me to.’”

Once patients have reviewed the required materials, they need to click “finish.” That automatically generates a signature form, with a date and time stamp of the exact moment they clicked “finish.” That time stamp must be at least 24 hours, but no more than two weeks, before their appointment. Otherwise, under Michigan law, the appointment must be canceled.

Patients must then print and bring a copy of that signed, time-stamped page to the appointment.

Cancellations Over Paperwork Can Lead to Increased Risks

Planned Parenthood of Michigan reports turning away at least 150 patients a month because of mistakes with that form: The patient didn’t sign it in the proper time window, or printed the wrong page, or didn’t have a printer.

That delay in care can be medically risky, said OB-GYN Charita Roque, who testified at the hearing for the Reproductive Health Act. Roque explained that a patient had developed peripartum cardiomyopathy, a potentially life-threatening heart problem that can occur during pregnancy.

“Not wanting to risk her life, or leave the young child she already had without a mother, she decided to get an abortion,” said Roque, who is also an assistant professor at Western Michigan University’s medical school. “But by the time she finally got to me, she was 13 weeks pregnant, and the clock was ticking due to her high-risk health status.”

The patient didn’t have a printer, so when she arrived at her appointment, she hadn’t brought a hard copy of the required form. Her appointment was postponed.

“During that time, her cardiac status became even higher risk, and it was evident that she would need a higher level of care in a hospital setting,” Roque said. “This meant that the cost would be much, much higher: over $10,000. And since her insurance was from covering abortion care, she anticipated she would have to incur significant medical debt. In the end, she suffered a five-week delay from the first day I saw her [to] when her procedure was finally completed. The delay was entirely unnecessary.”

A Democrat Breaks With Her Party

Republicans and abortion opponents have called the Reproductive Health Act a political overreach, pointing out that the bills go far beyond Proposal 3’s promise, which was to “#RestoreRoe.”

“The so-called Reproductive Health Act, with its dangerous and unpopular changes, goes far beyond what Michigan voters approved in Proposal 3 of 2022,” Republican state Rep. Ken Borton said . “While claiming to promote reproductive health, this plan ultimately risks hurting Michigan residents by undermining patients and decriminalizing the worst parts of abortion practices.”

Still, until a few weeks ago, Democrats appeared poised to pass the Reproductive Health Act through their majorities in the House and Senate. Gov. Gretchen Whitmer vowed to sign it.

Then, on Sept. 20, state Rep. Karen Whitsett stunned her party: She cast the lone Democratic “no” vote in the House of Representatives health policy committee. The bills still passed out of committee, but the Democrats’ majority in the House is so slim, they can’t afford to lose a single vote.

Whitsett said that she’s not alone in her concerns, and that other Democrats in the state legislature have privately voiced similar doubts about the legislation.

At first, Whitsett said, she thought her discussions with Democratic leadership were productive, “that we were actually getting somewhere. But it was pushed through. And I was asked to either not come to work, or to pass on my vote. I’m not doing either of those.”

It’s not that Whitsett doesn’t support abortion rights, she said. “I’ve been raped. I’ve gone through the process of trying to make the hard decision. I did the 24-hour pause. I did all these things that everyone else is currently going through.”

And because she’s had an abortion, she said, she is proof the current restrictions aren’t so unreasonable. If the current online forms are confusing, she said, “let’s bring this into 2023: How about you DocuSign? But I still do not think that 24 hours of a pause, to make sure you’re making the right decision, is too much to ask.”

Most of all, Whitsett said, her constituents in Detroit and Dearborn do not want Medicaid — and, therefore, their tax dollars — funding elective abortions. Medicaid is jointly funded by state and federal dollars, and the long-standing ” prohibits federal funds from paying for abortions except in the case of rape or incest, or to save the life of the patient. But states have the option to use their own funding to cover abortion care for .

In Michigan, voters approved a ban in 1988 on , but the new legislation would overturn that. The change would increase state Medicaid costs by an estimated $2 million-$6 million, according to a analysis.

“People are saying, ‘I agree to reproductive health. But I never agreed to pay for it,’” Whitsett said. “And I think that’s very fair. … I just do not think that that’s something that should be asked of anyone as a taxpayer.”

As Legislative Clock Ticks, Political Pressures Ramp Up

Whitsett is now the target of a public pressure campaign by advocacy groups such as the American Civil Liberties Union of Michigan and Planned Parenthood of Michigan. A virtual event targeted Detroit voters in Whitsett’s district. Paula Thornton-Greer, president and CEO of Planned Parenthood of Michigan, issued a public statement claiming Whitsett would be “solely responsible for the continued enforcement of dozens of anti-abortion restrictions that disproportionately harm women of color and people who are struggling to make ends meet.”

Crissman, the OB-GYN, said she’s tired of not being able to give her patients the care they seek.

“I wish Rep. Whitsett could sit with me and tell a patient to their face: ‘No, we can’t provide your abortion care today, because you printed the wrong page on this 24-hour consent,’” Crissman said. “Or ‘No, mother of five trying to make ends meet and feed your kids, you can’t use your Medicaid to pay for abortion care.’ Because I don’t want to tell patients that anymore.”

But abortion opponents say they’re not surprised the legislation has stalled.

“These hastily crafted bills present a real danger to women and our broader communities,” said Genevieve Marnon, legislative director of , in an email. “I have no doubt many people of good conscience are finding cause for hesitation, for a whole host of reasons.”

On Monday, Gov. Whitmer told reporters she still expects “the whole package” of legislation in the Reproductive Health Act to pass.

“Any and every bill of the RHA that hits my desk, I’m going to sign. I’d like to see them come as a package. It’s important, and I think that the voters expect that. It was a result of an overwhelming effort to enshrine these rights into our constitution. But also with an expectation that additional barriers are going to be leveled. So I’m not going to pick and choose. I’m not going to say that I can live with this and not that. I want to see the whole package hit my desk.”

This article is from a partnership that includes , , and Ģ��ӰԺ Health News.

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

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NEDA shuttered that service in May, saying that, in its place, a chatbot called Tessa, designed by eating disorder experts with funding from NEDA, would be deployed.

When NPR aired last month, Tessa was up and running online. Since then, both and about Tessa have been taken down. When asked why, NEDA said the bot is being “updated,” and the latest “version of the current program [will be] available soon.”

Then NEDA announced on May 30 that it was indefinitely disabling Tessa. Patients, families, doctors, and other experts on eating disorders were stunned. The episode has set off a fresh wave of debate as companies turn to artificial intelligence as a possible solution for a mental health crisis and treatment shortage.

Paid staffers and volunteers for the NEDA help line said that replacing the service with a chatbot could further isolate the thousands of people who use it when they feel they have nowhere else to turn.

“These young kids … don’t feel comfortable coming to their friends or their family or anybody about this,” said Katy Meta, a 20-year-old college student who has volunteered for the help line. “A lot of these individuals come on multiple times because they have no other outlet to talk with anybody. … That’s all they have, is the chat line.”

The decision is part of a larger trend: Many mental health are struggling to provide services and care in response to a sharp , and some are and AI, even though clinicians are still trying to figure out how to them, and .

The help line’s five staffers formally notified their employer they had formed a union in March. Just a few days later, on a March 31 call, NEDA informed them that they would be laid off in June. NPR and Ģ��ӰԺ Health News obtained audio of the call. “We will, subject to the terms of our legal responsibilities, [be] beginning to wind down the help line as currently operating,” NEDA board chair Geoff Craddock told them, “with a transition to Tessa, the AI-assisted technology, expected around June 1.”

NEDA’s leadership denies the decision had anything to do with the unionization but told NPR and Ģ��ӰԺ Health News it became necessary because of the covid-19 pandemic, when eating disorders surged and the number of calls, texts, and messages to the help line more than doubled.

The increase in crisis-level calls also raises NEDA’s legal liability, managers explained in an email sent March 31 to current and former volunteers, informing them that the help line was ending and that NEDA would “begin to pivot to the expanded use of AI-assisted technology.”

“What has really changed in the landscape are the federal and state requirements for mandated reporting for mental and physical health issues (self-harm, suicidality, child abuse),” according to the email, which NPR and Ģ��ӰԺ Health News obtained. “NEDA is now considered a mandated reporter and that hits our risk profile — changing our training and daily work processes and driving up our insurance premiums. We are not a crisis line; we are a referral center and information provider.”

Pandemic Created a ‘Perfect Storm’ for Eating Disorders

When it was time for a volunteer shift on the help line, Meta usually logged in from her dorm room at Dickinson College in Pennsylvania.

Meta recalled a recent conversation on the help line’s messaging platform with a girl who said she was 11. The girl said she had just confessed to her parents that she was struggling with an eating disorder, but the conversation had gone badly.

“The parents said that they ‘didn’t believe in eating disorders’ and [told their daughter], ‘You just need to eat more. You need to stop doing this,’” Meta recalled. “This individual was also suicidal and exhibited traits of self-harm as well. … It was just really heartbreaking to see.”

Eating disorders are common, serious, and sometimes fatal illnesses. An estimated experience an eating disorder during their lifetimes. Eating disorders also have some of the among mental illnesses, with an estimated death toll of more than 10,000 Americans each year.

But after covid hit, closing schools and forcing people into prolonged isolation, crisis calls and messages like the one Meta describes became far more frequent on the help line.

In the U.S., the rate of pediatric surged. On the NEDA help line, client volume increased by more than 100% compared with pre-pandemic levels.

“Eating disorders thrive in isolation, so covid and shelter-in-place was a tough time for a lot of folks struggling,” explained Abbie Harper, who has worked as a help line associate.

Until a few weeks ago, the help line was run by just five to six paid staffers and two supervisors, and it depended on a rotating roster of 90-165 volunteers at any given time, according to NEDA.

Yet even after lockdowns ended, NEDA’s help line volume remained elevated above pre-pandemic levels, and the cases continued to be clinically severe. Staffers felt overwhelmed, undersupported, and increasingly burned out, and turnover increased, according to multiple interviews.

The help line staff formally notified NEDA that their unionization vote had been certified on March 27. Four days later, they learned their positions were being eliminated.

“Our volunteers are volunteers,” said Lauren Smolar, NEDA’s vice president of mission and education. “They’re not professionals. They don’t have crisis training. And we really can’t accept that kind of responsibility.” Instead, she said, people seeking crisis help should be reaching out to resources like 988, that connects people with trained counselors.

The surge in volume also meant the help line was unable to respond immediately to 46% of initial contacts, and it could take six to 11 days to respond to messages.

“And that’s frankly unacceptable in 2023, for people to have to wait a week or more to receive the information that they need, the specialized treatment options that they need,” Smolar said.

After learning in the March 31 email that the helpline would be phased out, volunteer Faith Fischetti, 22, tried out the chatbot on her own, asking it some of the more frequent questions she gets from users. But her interactions with Tessa were not reassuring: “[The bot] gave links and resources that were completely unrelated” to her questions, she said.

Fischetti’s biggest worry is that someone coming to the NEDA site for help will leave because they “feel that they’re not understood, and feel that no one is there for them. And that’s the most terrifying thing to me.”

A Chatbot Can Miss Red Flags

Tessa the chatbot was created to help a specific cohort: people with eating disorders who never receive treatment.

Only 20% of people with eating disorders get formal help, according to a psychologist and associate professor at Washington University School of Medicine in St. Louis. Her team created Tessa after receiving funding from NEDA in 2018, with the goal of looking for ways technology could help fill the treatment gap.

NEDA said Tessa was supposed to be a “rule-based” chatbot, meaning one that is programmed with a limited set of possible responses. It is not ChatGPT and cannot generate unique answers in response to specific queries. “So she can’t go off the rails, so to speak,” Fitzsimmons-Craft said.

The plan was for Tessa to guide users through an interactive, weeks-long course about body positivity, based on cognitive behavioral therapy tools. Additional content about bingeing, weight concerns, and regular eating was under development but not yet available to users.

There’s evidence the AI approach can help. Fitzsimmons-Craft’s team did a small study that found with Tessa had significantly greater reductions in “weight/shape concerns” than a control group at three- and six-month follow-ups.

But even the best-intentioned technology can carry risks. Fitzsimmons-Craft’s team looking at ways the chatbot “unexpectedly reinforced harmful behaviors at times.” For example, the chatbot would give users a prompt: “Please take a moment to write about when you felt best about your body?”

Responses included: “When I was underweight and could see my bones.” “I feel best about my body when I ignore it and don’t think about it at all.”

The chatbot seemed to ignore the troubling aspects of such responses — and even to affirm negative thinking — when it would reply: “It is awesome that you can recognize a moment when you felt confident in your skin, let’s keep working on making you feel this good more often.”

Researchers were able to troubleshoot some of those issues. But the chatbot still missed red flags, the study found, such as when it asked: “What is a small healthy eating habit goal you would like to set up before you start your next conversation?”

One user replied, “Don’t eat.”

“Take a moment to pat yourself on the back for doing this hard work, <<USER>>!” the chatbot responded.

Massachusetts Institute of Technology assistant professor Marzyeh Ghassemi has seen issues like this crop up in her own research developing machine learning to improve health.

Large language models and chatbots will inevitably make mistakes, but “sometimes they tend to be wrong more often for certain groups, like women ,” she said.

If people receive bad advice or instructions from a bot, “people sometimes have a difficulty not listening to it,” Ghassemi added. “I think it sets you up for this really negative outcome … especially for a mental health crisis situation, where people may be at a point where they’re not thinking with absolute clarity. It’s very important that the information that you give them is correct and is helpful to them.”

And if the value of the live help line was the ability to connect with a real person who deeply understands eating disorders, Ghassemi said, a chatbot can’t do that.

“If people are experiencing a majority of the positive impact of these interactions because the person on the other side understands fundamentally the experience they’re going through, and what a struggle it’s been, I struggle to understand how a chatbot could be part of that.”

Tessa Goes ‘Off the Rails’

When Sharon Maxwell heard NEDA was promoting Tessa as “a meaningful prevention resource” for those struggling with eating disorders, she wanted to try it out.

Maxwell, based in San Diego, had struggled for years with an eating disorder that began in childhood. She now works as a consultant in the eating disorder field. “Hi, Tessa,” she typed into the online text box. “How do you support folks with eating disorders?”

Tessa rattled off a list of ideas, including resources for “healthy eating habits.” Alarm bells immediately went off in Maxwell’s head. She asked Tessa for details. Before long, the chatbot was giving her tips on losing weight — ones that sounded an awful lot like what she’d been told when she was put on Weight Watchers at age 10.

“The recommendations that Tessa gave me were that I could lose 1 to 2 pounds per week, that I should eat no more than 2,000 calories in a day, that I should have a calorie deficit of 500-1,000 calories per day,” Maxwell said. “All of which might sound benign to the general listener. However, to an individual with an eating disorder, the focus of weight loss really fuels the eating disorder.”

It’s really important that you find what healthy snacks you like the most, so if it’s not a fruit, try something else!

Tessa, the chatbot

NEDA blamed the chatbot’s issues on Cass, the that operated Tessa as a free service. Cass had changed Tessa without NEDA’s awareness or approval, said NEDA CEO Liz Thompson, enabling the chatbot to generate new answers beyond what Tessa’s creators had intended.

Cass’ founder and CEO, Michiel Rauws, said the changes to Tessa were made last year as part of a “systems upgrade,” including an “enhanced question-and-answer feature.” That feature uses generative artificial intelligence — meaning it gives the chatbot the ability to use new data and create new responses.

That change was part of NEDA’s contract, Rauws said.

But Thompson disagrees. She told NPR and Ģ��ӰԺ Health News that “NEDA was never advised of these changes and did not and would not have approved them.”

“The content some testers received relative to diet culture and weight management, [which] can be harmful to those with eating disorders, is against NEDA policy, and would never have been scripted into the chatbot by eating disorders experts,” she said.

Complaints About Tessa Started Last Year

NEDA was aware of issues with the chatbot months before Maxwell’s interactions with Tessa in late May.

In October 2022, NEDA passed along screenshots from Monika Ostroff, executive director of the Multi-Service Eating Disorders Association in Massachusetts. They showed Tessa telling Ostroff to avoid “unhealthy” foods and eat only “healthy” snacks, like fruit.

“It’s really important that you find what healthy snacks you like the most, so if it’s not a fruit, try something else!” Tessa told Ostroff. “So the next time you’re hungry between meals, try to go for that instead of an unhealthy snack like a bag of chips. Think you can do that?”

Ostroff said this was a clear example of the chatbot encouraging “diet culture” mentality. “That meant that they [NEDA] either wrote these scripts themselves, they got the chatbot and didn’t bother to make sure it was safe and didn’t test it, or released it and didn’t test it,” she said.

The healthy-snack language was quickly removed after Ostroff reported it. But Rauws said that language was part of Tessa’s “pre-scripted language, and not related to generative AI.”

Fitzsimmons-Craft said her team didn’t write it, that it “was not something our team designed Tessa to offer and that it was not part of the rule-based program we originally designed.”

Then, earlier this year, “a similar event happened as another example,” Rauws said.

“This time it was around our enhanced question-and-answer feature, which leverages a generative model. When we got notified by NEDA that an answer text it provided fell outside their guidelines,” it was addressed right away, he said.

Rauws said he can’t provide more details about what this event entailed.

“This is another earlier instance, and not the same instance as over the Memorial Day weekend,” he said via email, referring to Maxwell’s interactions with Tessa. “According to our privacy policy, this is related to user data tied to a question posed by a person, so we would have to get approval from that individual first.”

When asked about this event, Thompson said she doesn’t know what instance Rauws is referring to.

Both NEDA and Cass have issued apologies.

Ostroff said that regardless of what went wrong, the impact on someone with an eating disorder is the same. “It doesn’t matter if it’s rule-based or generative, it’s all fat-phobic,” she said. “We have huge populations of people who are harmed by this kind of language every day.”

She also worries about what this might mean for the tens of thousands of people turning to NEDA’s help line each year.

Thompson said NEDA still offers numerous resources for people seeking help, including a screening tool and resource map, and is developing new online and in-person programs.

“We recognize and regret that certain decisions taken by NEDA have disappointed members of the eating disorders community,” she wrote in an emailed statement. “Like all other organizations focused on eating disorders, NEDA’s resources are limited and this requires us to make difficult choices. … We always wish we could do more and we remain dedicated to doing better.”

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Michiels directs pediatric emergency medicine at in Grand Rapids, Michigan. Lips pressed together in a thin line, she surveyed what she calls the “disaster” area.

“People have been out here waiting for a couple hours, which is heartbreaking,” she said.

Typically, the ER at DeVos Children’s sees about 140 kids each day, according to Michiels, but on a recent Tuesday in early December, they saw 253.

“I hate when we have a wait,” sighed Michiels. “But for right now, we can’t do it any other way.”

Like many other children’s hospitals across the nation, the capacity of the staff at DeVos Children’s has been stretched by waves of patients with RSV and, increasingly, the flu.

This surge of sick kids is coming after years of some U.S. hospitals cutting back on pediatric beds — in part because it is typically more profitable to treat adult patients. The remaining pediatric beds are increasingly concentrated in urban areas, leaving families in rural areas to to get care for their children.

When Staci Rodriguez brought her 9-month-old son into the ER in their hometown of Shelby Township, Michigan, she was desperate. Santiago Botello Rodriguez, who has big brown eyes and long eyelashes that everybody gushes over, had been sick for days. First Santi stopped eating, so she took him to urgent care, she said. Then he started sleeping 20 hours a day, so Rodriguez went to the pediatrician. She said she was sent home, after being told Santi was just fighting a virus.

Within hours of leaving the pediatrician though, Santi “was so much worse,” Rodriguez said. “His fever was way too high. I couldn’t get it down.” She took him to the ER, where doctors told her Santi had RSV, and that his oxygen saturation levels were dangerously low.

Rodriguez said staff members at the Shelby hospital told her that they couldn’t give him the care he needed, and that they didn’t have the proper equipment.

Out of 130 acute care hospitals in Michigan, 10 currently have pediatric ICUs, according to the .

The ER wanted to transfer Santi immediately, but Rodriguez said that first there was an agonizing wait while the medical team deliberated where to send him. A hospital in Muskegon was much closer, but DeVos could offer more intensive care.

“So they sent us to DeVos, and he had to ride in the ambulance,” she said. The trip took an hour. “I thought I was going to be able to hold him.”

But for safety, Santi needed to be strapped to the stretcher. “Luckily, he just kind of stared at me the whole time, and then eventually fell asleep,” she said.

Rodriguez watched the beeping monitors as she recounted their story in the hospital room at DeVos Children’s, which had been partitioned to make room for another sick infant and his family.

Moments before, six staff members had assembled around Santi’s bed, speaking in soft tones as they worked to thread a tiny feeding tube through his nostril. Next, as Santi wailed, they held down his chubby arms to keep him still so they could take an X-ray to confirm the tube had been placed properly.

Afterward, Santi lay comfortably on his mother’s chest, a small oxygen tube taped to his face, his breathing labored, while he struggled against sleep. The baby kept both eyes trained on his dad, Saul Botello.

“I hate seeing him like this,” Botello said, his hands in his sweatshirt pocket, his own eyes glued to his son. Eventually, Santi’s heavy lids closed, and he slipped into a fitful sleep in the hospital crib. His mom rubbed his back, shushing him softly.

“He’ll be fine, just have to support him through [this],” said Dr. Andrea Hadley, chief of pediatric medicine at DeVos.

Hadley gets desperate calls from smaller hospitals or free-standing ERs in rural areas, asking if they can transfer their patients to DeVos Children’s. “I have had many calls come in where they said, ‘We’ve called 15 other places and they’ve all said no.'”

Big children’s hospitals like DeVos regularly get transfer requests. But in recent weeks, the calls are coming from a much larger geographical area, including parts of Illinois. Patients who live in Michigan’s Upper Peninsula typically go to Wisconsin for care, Hadley said, but now, those hospitals are full, too.

In response, DeVos Children’s has doubled up rooms, squeezing two patients (and their families) into rooms meant for one. The hospital is also allowing no more than one parent or guardian to stay overnight.

Even with those changes, Hadley said, the hospital has capacity to care only for the sickest children.

“We’ve had to say, ‘We see you, we’re going to support you, but we can’t bring you here yet,'” she said.

In the past, Hadley said, they’d take all referral requests from other hospitals. Across the health care industry, pandemic-era staffing shortages are adding to the strain. Michigan has lost 1,700 staffed hospital beds since 2020, according to the Michigan Health & Hospital Association. That’s left children’s hospitals scrambling during this RSV and influenza surge.

At the Children’s Hospital of Michigan, there’s enough staff to cover only about 60% of the beds, according to chief medical officer Dr. Rudy Valentini. With 40% of beds unavailable, children who need to be admitted must wait in the ER until a bed opens up.

“So we have ICU patients in our emergency department that can’t get up to our ICU,” Valentini said on Dec. 6.

The sheer number of pediatric patients, the bed closures, and the staffing shortages have created a perfect storm for children’s hospitals, leaving them with difficult decisions.

“There’s also a moral distress associated with the thought of having to turn patients away,” Hadley said.

“And how do we balance that distress that comes with knowing, potentially — if we as a system don’t stretch a little more — that there might be patients that are turned away?”

But stretching personnel already “on the brink of burnout” comes with its own risks, said Jamie West, a nurse manager at DeVos. On her floor, there are enough nurses to safely care for 18 patients. But recently, West said they’ve had to stretch the same number of nurses to care for up to 33 seriously ill patients. They don’t have enough electronic monitors for every patient either, Hadley added.

“These kids are just so much sicker [than we typically see during RSV season],” West said. “And when you think about nurses that are already in very large patient assignments, nurses are very worried that their child’s going to go downhill very quickly, that they’re going to maybe miss something because they’re spread so thin.”

At DeVos Children’s, Michiels is a constant blur of motion. One moment, the emergency medicine physician was doing a sepsis work-up for a 12-year-old boy whose fever wouldn’t break. The next moment, her pager went off and she strode down a long linoleum hall to the room designated as the “resuscitation room.” Staffers try to keep that one room open, Michiels said, for “the next blue baby” who’s rushed in.

In a room at the end of the hall, Caitlyn Houston hovered over her 7-week-old daughter, Parker, as nurses tied a small band around the baby’s flailing arm. Parker’s reddened face was bunched up in distress, her cries filling the small room. We’re going to admit her, Michiels told Houston — probably to the pediatric intensive care unit.

Still, Houston couldn’t help but ask: “But you’re not going to send us home, right?”

No, Michiels reassured her softly. The two could stay. Houston said they’d spent the past several sleepless nights in and out of the ER.

“There’s so many kids in here that they have to take the ones that are really bad,” Houston said. “And even two nights ago in the middle of the night, the ER was packed. So we were there for two hours, waiting.”

Being told your infant may need lifesaving medical intervention is never good news, but for parents like Houston, being admitted to the hospital brings relief. Their child would at last get a bed.

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All three women sought abortion care at Northland Family Planning Center in Sterling Heights, a city in the metro Detroit area. And all told their stories to reporter Kate Wells as she embedded in the in August and September. Wells’ story, produced in partnership with KHN, ’s “Morning Edition” on Nov. 3. (The story includes audio of one woman’s abortion procedure that some listeners may find disturbing.)

Northland was started in 1976 by . She had undergone an illegal abortion at age 16, back in 1966, seven years before Roe v. Wade. In recent months, patients have been traveling to Northland’s three locations from Wisconsin, Indiana, Oklahoma, even as far as Florida and Texas.

But abortion rights in Michigan are far from certain. So far, courts have blocked enforcement of a 1931 law that bans the procedure with no exceptions for rape or incest. But the judicial wrangling has been confusing. On Aug. 1, for example, rapid-fire court rulings meant that was legal at breakfast, illegal at lunchtime, and legal once again by dinner.

Michigan voters decide Nov. 8 whether abortion stays legal in the state. What’s known as would explicitly enshrine in the Michigan Constitution the right to abortion, as well as other reproductive rights.

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“And while I was on the subway, my mom’s friend said, ‘Something is wrong with your mom,’” Revere said. “‘We don’t know what’s going on, but your mom got lost driving home. What should have been a 15-minute drive ended up taking two hours.’”

Revere flew to L.A. At her mom’s home in Inglewood, she found foreclosure notices, untreated termite damage on the porch, and expired food in the kitchen. Her mother, Lynn Hindmon, was a devout evangelical who worked for her church. A slim, regal self-declared “health nut,” Hindmon was now forgetting to pay bills and couldn’t remember whom she was talking to on the phone.

Revere did not know it then, but that tough time would lead her to find — and help build — a community of caregivers who support one another on social media. TikTok has been an especially helpful platform. Content with the hashtag “dementia” has racked up more than as younger generations, already accustomed to sharing their lives online, now find themselves caring for aging loved ones — often with little preparation and no idea how to do it. Over the past few years, Revere’s account, , has become wildly popular, with more than 650,000 followers. Ardent fans have told her they feel like they personally know her and her mom.

It would take nearly a year to get the diagnosis that confirmed what Revere already suspected: Her mother — still in her 50s — had Alzheimer’s disease. Barely 10 years since Revere left home, she found herself moving back in to become a full-time caregiver for her mom and her grandmother, diagnosed with Alzheimer’s years earlier.

“That first year and a half, I was just filled with fear: What if I lose the house?” Revere said.

Because of the stress, she said, “I went through bouts of migraines. My hair, right in the middle, fell out completely.”

“I had to figure out how to get control of all the banking, figure out the passwords, make sure the bills are paid, make sure everything’s taken care of.”

In 2017, her grandmother died. Revere’s grief and isolation felt overpowering. Her friends in their 20s either couldn’t relate or thought she was “wallowing in pity,” Revere said.

Trying to make them understand what her daily life was like now seemed impossible. “I just wanted to find people I didn’t have to explain everything to,” she said.

Revere tried a support group for caregivers, an hour’s drive away. But the other attendees were decades older and had more financial resources. “[They] would say, ‘And now I have to take equity out of our house,’ or ‘I’m thinking of reaching into our 401(k).’ And then I would tell my story, and people would be looking at me like … a charity case, or like my problem is unsolvable. … I just felt worse.”

These days Revere no longer feels so alone. She’s a celebrity of sorts on TikTok, at least among the hundreds of thousands of people who post about the difficulties of caring for a loved one with dementia.

Daughters Are Often Dementia Caregivers

Alzheimer’s is the most common form of . Others include vascular, Lewy body, frontotemporal, and mixed dementia, says the Centers for Disease Control and Prevention. Nearly all forms worsen over time, and there is no cure, although there are some treatments.

The task of caring for people with dementia usually falls on family members. Every year, an estimated 16 million Americans provide more than 17 billion hours of unpaid care for relatives or friends suffering from Alzheimer’s disease or other dementias, . About 60% of these caregivers are .

“Unfortunately, there is not a very strong system of paid support for people with dementia,” said , an associate professor who studies aging and cognitive impairment at UCSF’s . “And so the most common way of supporting persons with dementia is the daughter.”

Like Revere, many of the women who become caregivers end up quitting their jobs. They often find themselves financially vulnerable and “extremely isolated,” said Portacolone.

Another expert, Teepa Snow, said too many caregivers are struggling. Snow, an occupational therapist in North Carolina, runs a company that trains caregivers of people with dementia. Her own how-to videos about practical, compassionate caregiving rack up millions of views. “TikTok is where people are expressing an unmet need,” she said.

Because there’s no cure for dementia, the medical community often treats it the way previous generations of practitioners treated cancer — like “a big black box,” Snow said. Decades ago, when people got cancer, “we didn’t say anything; we didn’t talk about it. We said, ‘Oh, gosh, that’s horrible.’ And people were like, ‘How long have they got?’”

What family members need from the medical system, Snow said, is more understanding of symptoms and how to handle them, more help setting up long-term support systems, and knowledge about how patients can be helped by changes to their dietary, sleep, and exercise habits.

All too often, however, caregivers are left to muddle through the complex tasks of keeping a patient safe. “That’s pretty lonely,” Snow said.

The covid pandemic disrupted or closed down much in-person support for caregivers, including the adult day care center Revere’s mom had been attending five days a week. Desperate to find social connection, Revere did what so many as the pandemic stretched on: She got on TikTok. The short video format has attracted caregivers, who find they can document and share the vivid moments of their worlds at home in ways that would be less visceral on text- or photo-centric platforms.

You can watch a woman’s video of caring for her husband with early-onset Alzheimer’s or one of Revere’s @MomofMyMom posts from 2020, which walks viewers through their .

“It’s bath day,” Revere says at the start of the post, while still lying in bed. “I try my best not to make this an emotionally draining experience,” she sighs. “So let’s begin.”

Bathing someone with dementia can be difficult, even dangerous. They can get disoriented, or feel threatened when someone takes off their clothes or maneuvers them into a wet tub. They may slip and fall, or try to fight their caregiver. Revere has created a soothing, predictable routine for her mother. At the time of this video, Hindmon is 63, and it’s about five years after her Alzheimer’s diagnosis. She’s not speaking much. Lynn Hindmon is tall, with great cheekbones. This day she’s wearing neon-blue leggings and a purple beanie.

Revere starts off by promising her mom a present — which she’ll get after the bath.

Revere walks her audience through the process, sharing what works for them. She turns on some soul music, plugs in the space heater, puts the dog outside, and lays out all her mom’s clothes. “Lure her into my cave,” she says, as her mom enters the bathroom.

The video then cuts to after the bath is over: Mother and daughter are celebrating with a bathroom dance party.

The video got more than 20,000 views. Hundreds of people left comments, saying how they can relate. One comment read: “My mother-in-law passed a year ago this week. This was the most frustrating part of caring for her. Devoted a whole day to getting this done.” Another commenter told Revere, “God Bless you! I know it’s hard. I see you and send so much love your way.”

Revere posted a follow-up right away:

“How many of us are on here?” she said into the camera. “I’ve been, like, looking for people my age that I can relate to, who have the same experience.”

Revere’s following soared from just a couple of thousand followers to more than 650,000. Many people used the comments to talk about their own caregiving struggles. They wanted to see the little victories, like Revere’s gentle, joyful tricks for getting through bath time. They also listen to Revere’s candid confessions.

“Y’all, I have never been so emotionally drained in my life,” she shared in one . “Caregiving eats your soul. It kills your spirit. It’s constant mourning for years. … And it’s beautiful.”

Content Creators Weigh Ethics of Going Public

The intimate, unvarnished depictions of dementia on TikTok have raised ethical issues surrounding privacy, dignity, and consent. There are videos on the internet of adults who haven’t consented to their most vulnerable moments being shared with millions of strangers.

In one TikTok, a woman chronicles her grandmother’s aggression, filming as the elderly woman chases her through the house, fists swinging wildly. Other content creators film the verbal abuse that caregivers can experience.

Beth Kallmyer, vice president for care and support for the Alzheimer’s Association, doesn’t think the people posting these videos intend to be exploitative. “You could tell that the caregivers just felt isolated and frustrated and at their wits’ end, with no resources,” she said.

“If I were talking to a family member … considering doing this,” Kallmyer said, “those are the questions I would pose to them: Would they [the person with dementia] be comfortable with this? Is there a way for you to film something that gets the idea across but maintains their dignity?

“Should we have a video of somebody that isn’t fully clothed? Or maybe [before Alzheimer’s] they only went outside when they were dressed to the nines or really put together, and you’ve got them in pajamas or sweatpants or whatever, and they don’t have makeup on. I’m not sure that’s the best way to go about using TikTok.”

Revere has a video that, in retrospect, she now feels ambivalent about posting. It’s the most-watched video on her channel, with 27 million views. In it, her mother is walking around the living room with an open bottle of mouthwash. She somehow got past the locks on the bathroom cabinets.

Lynn Hindmon thinks the mouthwash is a drink, like juice or milk. She looks frustrated and dazed as Revere tries to explain why she can’t drink mouthwash.

With some negotiation, Revere gets her mom to hand it over in exchange for an ice pop.

Some comments on that post call her mom an alcoholic, or say she looked scary. The experience made Revere feel protective — like she needed to be more careful, as she didn’t want to post anything that might put her mom in a bad light. Still, after much consideration, she decided to keep the mouthwash video up. She said it’s a good example of “redirecting” away from a risk — something other caregivers would understand.

On March 9, Jacquelyn Revere posted on TikTok, letting her followers know her mother had died. She was 65.

On TikTok, the messages of surprise and condolence poured in.

Revere, an only child, had always assumed that when her mom died she’d mourn her alone. Instead, people were checking in on her, sending her gifts, sharing memories of their favorite videos of Hindmon.

“It’s been the least lonely I’ve ever been throughout this experience, actually,” she said.

Revere has continued to post on @MomofMyMom, talking about what it feels like to miss her mom, and to mourn the life she didn’t live while she was caring for her.

Now she has time to go on dates, get a pedicure, or drive by the ocean.

After six years of caring for her mom, starting when she was just 29, Revere is now trying to figure out who she is now — and what she wants. She knows she wants to stay connected with dementia caregivers.

“I just want them to know that they’re being thought about,” Revere says. “Because that’s what I needed most. Just to know that life isn’t passing me by, and I’m not seen.

“I just want to make sure that they feel seen.”

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In Michigan, a proposed constitutional amendment would override a 90-year-old state law that makes abortion a felony even in cases of rape or incest. The U.S. Supreme Court’s overturning of Roe v. Wade last month could revive that abortion ban — and has galvanized abortion-rights advocates to secure new protections.

Some of the momentum is coming from activists getting involved for the first time.

“I wanted to do something, but I had no political experience or really any experience in activism,” said Amanda Mazur, who lives in rural northwestern Michigan. “But I thought, ‘Maybe I can volunteer and just offer something tangible to the movement.’”

Michigan organizers like Mazur submitted more than 750,000 signatures — a record number, they said — to state election officials in hopes of having the amendment appear on the November ballot.

If just over half those signatures are validated, Michigan voters will decide whether to amend the state’s constitution to guarantee broad individual rights to “reproductive freedom” that would cover abortion, contraception, and fertility treatments. It would also prevent the state from regulating abortions later in pregnancy if the patient’s “physical or mental health” is at risk.

The ballot initiative has the backing of medical groups like the American College of Obstetricians and Gynecologists, while conservative groups have called it radical and dangerous, claiming it would “allow late-term abortions for practically any reason.”

In California, the push to expand abortion access starts from a very different vantage point: The right to abortion is protected in state statute. And voters will be asked whether they want to enshrine it in the constitution. , which will be on the ballot in November, would prohibit the state from interfering with Californians’ reproductive health decisions, including those related to abortion or contraception.

“I want to know for sure that that right is protected,” state Sen. Toni Atkins (D-San Diego), the Democratic leader in the Senate and lead author of the amendment, said at a legislative hearing in June. “We are protecting ourselves from future courts and future politicians.”

The amendment is one strategy that several California lawmakers are pursuing to protect abortion access in the state. Gov. Gavin Newsom, a Democrat, has signed legislation to eliminate for most Californians and to protect California providers that offer abortion services from . The recent state budget deal also includes for reproductive and abortion care.

Earlier this month, Vermont Gov. Phil Scott, a Republican, announced that will be on the November ballot. He said in a statement: “In Vermont, we solidified the right to choose in law, and now Vermonters have the opportunity to further protect that right in our constitution.”

For Mazur, the desire to “do something” started in 2017, when she and her husband gave their daughter, then 2 years old, some happy news: She was going to be a big sister. The family was thrilled.

But then doctors told Mazur something was wrong.

“I found out halfway through the pregnancy that the baby my husband and I hoped for suffered from a rare and life-limiting genetic condition,” Mazur said. “We ultimately made the compassionate choice to end the pregnancy for my well-being, and for the well-being of our family, and the life of what we thought would be our child.”

Devastated, Mazur turned to a national online support group and met people having similar experiences. But many group members said they were having a tough time finding a way to terminate their pregnancies.

“It really broke my heart that you’re going through this already devastating experience but have to travel far away from your home across the country … [and] advocate for yourself like crazy just to get care that you have decided with your doctor is best for you,” Mazur said.

At the time, abortion rights in Michigan seemed pretty stable, but Mazur’s political awakening found an outlet this year.

Reproductive Freedom for All, a petition group backed by the American Civil Liberties Union of Michigan and Planned Parenthood Advocates of Michigan, was gathering signatures for the constitutional amendment to enshrine abortion protections in state law. The effort took on new urgency in May after a draft of the Supreme Court’s decision in Dobbs v. Jackson Women’s Health Organization was leaked and then published.

“Folks realized that this big, scary thing that they did not think would happen might actually happen,” said Jessica Ayoub, a field organizer with the ACLU of Michigan.

Some Michiganders were registering to vote just to be eligible to sign the petition. Jaynie Hoerauf, a 62-year-old attorney in Farwell, drove 40 miles to attend a rally where she knew she could sign it.

“A bunch of us were so ticked off [about Roe being overturned], and we were talking about it. And I was like, ‘I’m just going to go on and find where I can sign the stupid petition,’” Hoerauf said.

Activists on both sides of the abortion-rights debate expect to spend millions of dollars. They predict that donations will pour in from outside Michigan and that voters in other states will be watching.

“This is just the start of our fight,” Ayoub said. “We know that it is a long road to November.”

KHN correspondent Rachel Bluth contributed to this report.

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“They come up to your car super fast,” Mejia Arciñiega said. “You don’t want to run their feet over, so we had to stop and be like, ‘OK, no thank you.’ But then they started throwing a bunch of papers and resources at us. We tried to go inside, but we couldn’t.”

The clinic, which offers abortion care as well as birth control, cancer screenings, and STD treatment, has long been the target of anti-abortion protesters. Protesters’ efforts to limit abortions in the state may soon get a huge boost, if the Supreme Court strikes down Roe v. Wade.

In Michigan, this would have an immediate impact. Overnight, nearly all abortions would become a felony carrying a penalty of up to four years, even in cases of rape and incest. That’s because an old state law, last updated in 1931, was never repealed, even after Roe made it unenforceable in 1973.

Michigan Attorney General Dana Nessel, a Democrat, said she won’t enforce the law if it springs back into effect. But Michigan has 83 local county prosecutors, and Nessel said they could enforce the 1931 law. “I don’t think that I have the authority to tell the duly elected county prosecutors what they can and what they cannot charge,” Nessel .

Mejia Arciñiega, 18, who drove her friend to the Ann Arbor clinic, said she never imagined a world where abortion is illegal. “You wouldn’t think that in 2022, we’d be worrying about women’s rights, reproduction rights,” she said. “You wouldn’t want someone young that isn’t ready [to] have to have a baby because the law says ‘No.’ It’s not fair.”

The way the old state law is written, Nessel said, it’s possible that prosecutors could go after anyone who provides an abortion, as well as the person who takes medications to end their own pregnancy.

That could potentially “create a scenario where if a woman has self-aborted and she seeks medical care after that, will the doctor then have to report that to law enforcement?”

Speaking to reporters, Nessel also discussed the abortion she had years ago — one that would be illegal in the state if Roe falls. She was pregnant with triplets and doctors told her the embryos weren’t growing in utero, she said.

“And I was told very, very specifically that there was no way that all three would make it to term. But if I aborted one, that it was possible that the other two might live,” Nessel said. “I took my doctor’s advice … And you know what? It turned out that he was right. And now I have two beautiful sons.”

The 1931 law allows just one exemption: abortions “to preserve the life” of the woman. Yet doctors say they have no idea how to interpret that. Consider a woman who has severe heart disease with a 20% to 30% chance of dying during pregnancy.

“Is that enough of a chance?” asked a University of Michigan professor and OB-GYN, speaking this week on . “I hate to even put it that way, but is that enough of a chance of dying that that person would qualify under Michigan’s ban for a lifesaving abortion? Or would their risk of dying need to be 50% or 100%?”

Or what if a pregnant person has cancer and needs to end the pregnancy to begin chemotherapy? “There’s not an imminent risk of dying, but there might be a risk of dying years later if they didn’t have chemotherapy,” Harris said. “So these are the kind of situations doctors are wondering about.”

It’s also unclear whether a woman whose pregnancy would become life-threatening only in its later stages would be required to delay termination until then.

“We see people with things like kidney disease or other problems, where they’re actually OK during early pregnancy. But if the pregnancy were to continue and they were to give birth, then they would have a very high chance of dying,” Harris explained.

The state legislature is controlled by Republicans, but Michigan Gov. Gretchen Whitmer, a Democrat, filed a last month seeking to block the 1931 law from taking effect. filed a similar suit as well. And a campaign to collect enough signatures is underway to put abortion on the . But that would be months after the U.S. Supreme Court makes its final ruling on Roe, which is expected in late June or early July.

In the meantime, the confusion and uncertainty caused by the 1931 law could be enough for some health care professionals to stop offering abortions, Nessel said.

“I think that this will have the kind of chilling effect that doctors just simply will not perform this procedure really under any set of circumstances, because they don’t want to get dragged into court,” she said. “They don’t want to face the possibility of being prosecuted and the possibility of going to jail or prison. So I think that that, honestly, you’ll have doctors that really have to violate their Hippocratic oath and just say, ‘I’m sorry, I can’t help you.’”

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Tiffani Dusang, the ER’s nursing director, practically vibrates with pent-up anxiety, looking at patients lying on a long line of stretchers pushed up against the beige walls of the hospital hallways. “It’s hard to watch,” she said in a warm Texas twang.

But there’s nothing she can do. The ER’s 72 rooms are already filled.

“I always feel very, very bad when I walk down the hallway and see that people are in pain, or needing to sleep, or needing quiet. But they have to be in the hallway with, as you can see, 10 or 15 people walking by every minute,” Dusang said.

The scene is a stark contrast to where this emergency department — and thousands of others — were at the start of the pandemic. Except for initial hot spots like New York City, in spring 2020 many ERs across the country were often eerily empty. Terrified of contracting covid-19, people who were sick with other things did their best to stay away from hospitals. Visits to emergency rooms dropped to half their typical levels, according to the , and didn’t fully rebound until this summer.

But now, they’re too full. Even in parts of the country where covid isn’t overwhelming the health system, patients are showing up to the ER sicker than before the pandemic, their diseases more advanced and in need of more complicated care.

Months of treatment delays have exacerbated chronic conditions and worsened symptoms. Doctors and nurses say the severity of illness ranges widely and includes abdominal pain, respiratory problems, blood clots, heart conditions and suicide attempts, among other conditions.

But they can hardly be accommodated. Emergency departments, ideally, are meant to be brief ports in a storm, with patients staying just long enough to be sent home with instructions to follow up with primary care physicians, or sufficiently stabilized to be transferred “upstairs” to inpatient or intensive care units.

Except now those long-term care floors are full too, with a mix of covid and non-covid patients. People coming to the ER get warehoused for hours, even days, forcing ER staffers to perform long-term care roles they weren’t trained to do.

At Sparrow, space is a valuable commodity in the ER: A separate section of the hospital was turned into an overflow unit. Stretchers stack up in halls. A row of brown reclining chairs lines a wall, intended for patients who aren’t sick enough for a stretcher but are too sick to stay in the main waiting room.

Forget privacy, Alejos Perrientoz learned when he arrived. He came to the ER because his arm had been tingling and painful for over a week. He couldn’t hold a cup of coffee. A nurse gave him a full physical exam in a brown recliner, which made him self-conscious about having his shirt lifted in front of strangers. “I felt a little uncomfortable,” he whispered. “But I have no choice, you know? I’m in the hallway. There’s no rooms.

“We could have done the physical in the parking lot,” he added, managing a laugh.

Even patients who arrive by ambulance are not guaranteed a room: One nurse runs triage, screening those who absolutely need a bed, and those who can be put in the waiting area.

“I hate that we even have to make that determination,” Dusang said. Lately, staff members have been pulling out some patients already in the ER’s rooms when others arrive who are more critically ill. “No one likes to take someone out of the privacy of their room and say, ‘We’re going to put you in a hallway because we need to get care to someone else.'”

ER Patients Have Grown Sicker

“We are hearing from members in every part of the country,” said Dr. Lisa Moreno, president of the . “The Midwest, the South, the Northeast, the West … they are seeing this exact same phenomenon.”

Although the number of ER visits returned to pre-covid levels this summer, admission rates, from the ER to the hospital’s inpatient floors, are still almost 20% higher. That’s according to the most recent analysis by the , which pulls data from more than 120 million patients across the country.

“It’s an early indicator that what’s happening in the ED is that we’re seeing more acute cases than we were pre-pandemic,” said Caleb Cox, a data scientist at Epic.

Less acute cases, such as people with health issues like rashes or conjunctivitis, still aren’t going to the ER as much as they used to. Instead, they may be opting for an urgent care center or their primary care doctor, Cox explained. Meanwhile, there has been an increase in people coming to the ER with more serious conditions, like strokes and heart attacks.

So, even though the total number of patients coming to ERs is about the same as before the pandemic, “that’s absolutely going to feel like [if I’m an ER doctor or nurse] I’m seeing more patients and I’m seeing more acute patients,” Cox said.

Moreno, the AAEM president, works at an emergency department in New Orleans. She said the level of illness, and the inability to admit patients quickly and move them to beds upstairs, has created a level of chaos she described as “not even humane.”

At the beginning of a recent shift, she heard a patient crying nearby and went to investigate. It was a paraplegic man who’d recently had surgery for colon cancer. His large post-operative wound was sealed with a device called a wound vac, which pulls fluid from the wound into a drainage tube attached to a portable vacuum pump.

But the wound vac had malfunctioned, which is why he had come to the ER. Staffers were so busy, however, that by the time Moreno came in, the fluid from his wound was leaking everywhere.

“When I went in, the bed was covered,” she recalled. “I mean, he was lying in a puddle of secretions from this wound. And he was crying, because he said to me, ‘I’m paralyzed. I can’t move to get away from all these secretions, and I know I’m going to end up getting an infection. I know I’m going to end up getting an ulcer. I’ve been laying in this for, like, eight or nine hours.'”

The nurse in charge of his care told Moreno she simply hadn’t had time to help this patient yet. “She said, ‘I’ve had so many patients to take care of, and so many critical patients. I started [an IV] drip on this person. This person is on a cardiac monitor. I just didn’t have time to get in there.'”

“This is not humane care,” Moreno said. “This is horrible care.”

But it’s what can happen when emergency department staffers don’t have the resources they need to deal with the onslaught of competing demands.

“All the nurses and doctors had the highest level of intent to do the right thing for the person,” Moreno said. “But because of the high acuity of … a large number of patients, the staffing ratio of nurse to patient, even the staffing ratio of doctor to patient, this guy did not get the care that he deserved to get, just as a human being.”

The instance of unintended neglect that Moreno saw is extreme, and not the experience of most patients who arrive at ERs these days. But the problem is not new: Even before the pandemic, ER overcrowding had been a “widespread problem and a source of patient harm, according to a in NEJM Catalyst Innovations in Care Delivery.

“ED crowding is not an issue of inconvenience,” the authors wrote. “There is incontrovertible evidence that ED crowding leads to significant patient harm, including morbidity and mortality related to consequential delays of treatment for both high- and low-acuity patients.”

And already-overwhelmed staffers are burning out.

Burnout Feeds Staffing Shortages, and Vice Versa

Every morning, Tiffani Dusang wakes up and checks her Sparrow email with one singular hope: that she will not see yet another nurse resignation letter in her inbox.

“I cannot tell you how many of them [the nurses] tell me they went home crying” after their shifts, she said.

Despite Dusang’s best efforts to support her staffers, they’re leaving too fast to be replaced, either to take higher-paying gigs as a travel nurse, to try a less-stressful type of nursing, or simply walking away from the profession entirely.

Kelly Spitz has been an emergency department nurse at Sparrow for 10 years. But, lately, she has also fantasized about leaving. “It has crossed my mind several times,” she said, and yet she continues to come back. “Because I have a team here. And I love what I do.” But then she started to cry. The issue is not the hard work, or even the stress. She struggles with not being able to give her patients the kind of care and attention she wants to give them, and that they need and deserve, she said.

She often thinks about a patient whose test results revealed terminal cancer, she said. Spitz spent all day working the phones, hustling case managers, trying to get hospice care set up in the man’s home. He was going to die, and she just didn’t want him to have to die in the hospital, where only one visitor was allowed. She wanted to get him home, and back with his family.

Finally, after many hours, they found an ambulance to take him home.

Three days later, the man’s family members called Spitz: He had died surrounded by family. They were calling to thank her.

“I felt like I did my job there, because I got him home,” she said. But that’s a rare feeling these days. “I just hope it gets better. I hope it gets better soon.”

Around 4 p.m. at Sparrow Hospital as one shift approached its end, Dusang faced a new crisis: The overnight shift was more short-staffed than usual.

“Can we get two inpatient nurses?” she asked, hoping to borrow two nurses from one of the hospital floors upstairs.

“Already tried,” replied nurse Troy Latunski.

Without more staff, it’s going to be hard to care for new patients who come in overnight — from car crashes to seizures or other emergencies.

But Latunski had a plan: He would go home, snatch a few hours of sleep and return at 11 p.m. to work the overnight shift in the ER’s overflow unit. That meant he would be largely caring for eight patients, alone. On just a few short hours of sleep. But lately that seemed to be their only, and best, option.

Dusang considered for a moment, took a deep breath and nodded. “OK,” she said.

“Go home. Get some sleep. Thank you,” she added, shooting Latunski a grateful smile. And then she pivoted, because another nurse was approaching with an urgent question. On to the next crisis.

This story is part of a partnership that includes , and KHN.

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

USE OUR CONTENT

This story can be republished for free (details).