It was “just like a mosquito bite, nothing major, and I just scratched it,” said Toska, a political science professor.

Then she began to itch everywhere. She couldn’t see anything in the dark, so her husband shined his phone light on her.

She was covered in hives.

Because she also felt pressure in her chest, the family quickly went to an urgent care clinic. A doctor there recognized she was experiencing , a life-threatening, fast-moving allergic reaction.

The doctor rushed her to a room without checking her in, saw her blood pressure was low, and administered two epinephrine injections and IV fluids, Toska said. The itching stopped, and the tightness in her chest went away.

But the doctor said she needed to be monitored in an emergency room for at least two hours in case the reaction flared up again. Toska said the doctor insisted she take an ambulance to a nearby hospital, Atrium Health Lake Norman.

Minutes later, she found herself lying on a stretcher in the ER.

A doctor she described as “lovely” came in and spoke to her for no more than five minutes, Toska said. A nurse administered medicine through the IV line inserted at the urgent care clinic.

Toska was exhausted, but her mind was on her daughters. “I had two little kids who were scared, so I was playing with them and trying to distract them.”

After about an hour and a half, the doctor returned briefly, then the family went home, she said.

“That’s it,” Toska said. “Nothing happened at the ER.”

Then the bill came.

The Medical Service

Toska said the ER doctor reviewed her vitals and discussed her allergic reaction and what to watch for when she got home. She also received a dose of famotidine, a drug often used to treat an upset stomach that is also administered for allergic reactions.

The Bill

The in-network hospital system charged Toska’s insurer, Blue Cross Blue Shield of North Carolina, $6,746.50 for the ER visit, including $20.60 for the famotidine and $6,445.60 in “critical care” charges. Toska, who had not met her insurance deductible, was responsible for a $150 copay and $3,100.24 of the charges.

The Billing Problem: Critical Care

“Paying $3,100.24 for literally sitting in the ER entertaining my kids for an hour and a half feels kind of incredible,” Toska said.

Medical providers in the United States use a uniform coding system to bill for procedures and services. Most of Toska’s ER charges stemmed from Atrium Health’s use of two billing codes for “critical care” — one for 30 to 74 minutes of care, at $5,617.85 (code 99291), and another for an additional 30 minutes (code 99292), at $827.75.

According to the coding system, critical care is when a doctor “directly” provides at least 30 minutes of care to a patient with “a probability of imminent or life-threatening deterioration.”

According to the ER’s visit notes, which Toska shared with Ñî¹óåú´«Ã½Ò•îl Health News, Toska told the doctor there she was feeling “significantly better” when she arrived, and the doctor reported providing 90 minutes of personal critical care.

Anaphylactic shock is treated under code 99291, according to the . Though Toska’s symptoms may have indicated she was no longer in shock, treatment guidelines require at least two hours of monitoring, said Arjun Venkatesh, the chair of emergency medicine at the Yale School of Medicine.

With anaphylaxis, “some people are going to progress and require admission to the ICU, and some won’t,” Venkatesh said.

Toska was under critical care because of what could have happened, not what did happen, Venkatesh said. Hospitals use the same billing codes for the ER visit, whether a patient’s condition deteriorates or not.

“The billing rules are not built around this,” Venkatesh said.

Laura Eberhard, a spokesperson for Blue Cross Blue Shield of North Carolina, said Toska’s claims “were submitted by the provider using critical care codes, which represent a higher level of severity and reimbursement, and were processed in-network under the terms of the member’s plan.” She did not answer questions about whether Blue Cross Blue Shield negotiated the charges.

A spokesperson for Atrium Health did not answer questions from Ñî¹óåú´«Ã½Ò•îl Health News about Toska’s visit.

The Resolution

Toska said she called Blue Cross Blue Shield of North Carolina, trying to get a better explanation for why the bill for so little hands-on care was so high.

“The doctor determines the severity of the situation, and that’s the code we have,” the insurance representative said, according to Toska’s recollection. “This is critical care, and that’s what it costs.”

After Toska contacted the hospital, Atrium Health’s Audit and Appeals Department replied in a letter that the critical care designation was “based on the presenting problem that brought you to the emergency room, the treatment provided, and the nursing staff that took care of you.”

“It also includes the room, supplies, and equipment utilized during the visit,” the letter continued. “The charge is not based on time spent in the facility or with clinicians.”

Asking why the ER visit cost so much was more a matter of principle than necessity, she said, though she thought back a few years to a time when it would have been much harder for her to pay.

“The system is so broken,” Toska said.

The Takeaway

“Her experience is, sadly, very typical,” said Barak Richman, a professor of business law and co-director of the Health Law and Policy program at George Washington University. “Once you are brought onto the train of health care delivery, you have no control over where the stops are.”

Emergency rooms — for many the for medical care — are notorious for high costs, he said, adding that insurance companies should always try to negotiate critical care codes.

Toska was fortunate to dodge another problem common in emergencies: The bill for taking an ambulance to the ER was about $275, she said, notable since ambulance rides frequently result in bigger bills that may not be covered by insurance.

Patients can dispute charges with their insurance and the hospital. Like Toska, they should come to the phone with an itemized bill, medical records, and any other relevant documents, such as explanation-of-benefits statements.

Regardless of whether that’s a fight they can win, some who see one ER bill , especially if it might put them in .

In early March, Toska had a second allergic reaction. “OK,” she recalled thinking, “Do I go get the EpiPen? Do I go to the ER and get another massive bill?”

She decided against the trip and took Benadryl instead.

Bill of the Month is a crowdsourced investigation by Ñî¹óåú´«Ã½Ò•îl Health News and that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

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Céline Gounder, Ñî¹óåú´«Ã½Ò•îl Health News’ editor-at-large for public health, discussed the increase in hospital visits during tick season on CBS’ CBS Mornings on April 20. On April 18, for CBS News’ The Daily Report, Gounder discussed how some health podcasts generated by artificial intelligence are spreading misinformation. She also spoke with Scripps News about President Donald Trump’s nominee to lead the Centers for Disease Control and Prevention, Erica Schwartz.

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“I will not go to the emergency room” — emphasis on not — were his first words after passing out, having a seizure, or regurgitating the protein smoothies I made to pass his narrowed esophagus. He said it again and again, even as fluid built up in his lungs, rendering him short of breath and prone to agonizing coughing spells. He had been a big, athletic guy, but now, in the ugly process of dying, he was looking gaunt. Ours was a precarious existence, but I understood his adamant rejection of the emergency department. Most prior visits had morphed into extended trips into a terrifying medical underworld — to a purgatory known as emergency department boarding.

I managed to keep Andrej at home while we planned for hospice, until one dreadful night at 2 a.m., when I ran out of hacks. We got into an ambulance and together headed to the hospital.

* * *

We had already learned the hard way that if you need admission to the hospital, you can remain in the emergency department — in the hallway or a curtained bay on a hard stretcher or in a makeshift holding area — for more than 24 hours, even for days, while waiting for a real hospital bed. In this limbo state, you’re technically admitted to the hospital, but still located in the physical domain of the ER. And the rules governing acceptable care and safety measures become much less clear.

In the summer of 2024, still being treated to keep his cancer at bay, Andrej had suddenly become somewhat delirious, requiring hospital admission to rule out the possibility of infection or, worse, of the cancer having spread to his brain. After we went to an emergency department near our home, in New York City, he lay trapped on a hard stretcher, with its rails up, for more than 36 hours, amid the alarms and calls for the code team, without any clues of whether it was day or night, and with access only to the few toilets shared by the dozens of patients and visitors in the emergency room. None of this helped his mental state. By the end of Day 2, he knew me — kind of — but had become convinced that the doctors were “the enemy” and that I was their paid accomplice.

After I pressed to move him to a bed “upstairs” — I meant to an inpatient ward — he was transported to a bed five floors higher. I realized too late that this was an “ED overflow area,” according to the paper sign attached to the entrance’s swinging door. A plaque in the hall identified it as a former labor and delivery floor. It had been kitted out with some of the trappings of an actual ward, such as real beds and bathrooms, but not the most important one: adequate personnel.

The space was by turns eerily quiet and wildly cacophonous. Although patients there were undergoing intimate, embarrassing procedures, rooms were gender-neutral. That first night, Andrej’s roommates were a man in a coma and an elderly French woman in a diaper and boots (no pants), who marched around her bed singing like a chanteuse. In the morning, I pestered a harried nurse and got Andrej moved to a quieter room with three beds, where two people died in three days.

The overworked staff did the best they could, but that was far from good care. My husband — who needed protein and calories but could consume only soft foods — was served chicken cutlets. When I noted to one nurse that Andrej’s soiled sheets hadn’t been changed for several days, she directed me to a linen cart so I could change them myself.

* * *

That first time, one of several extended ER stays Andrej made as a boarder, I thought perhaps we had just hit a busy time at a busy hospital. When I worked as an emergency medicine doctor a few decades ago, the ED was mostly empty at the beginning of my 7 a.m. shift. A few patients might be lingering from the day before: alcoholics who would sober up and leave, patients with a severe burn or a bad case of pneumonia who were waiting for a bed in intensive care.

In the decades since, EDs have doubled or even tripled in size. Even so, patients are piling up. When I started asking around, I quickly discovered ED boarding has become commonplace in the past five or so years and is getting worse, more or less omnipresent in hospitals. “Everyone knows about this problem, and no one cares enough to do anything about it,” Adrian Haimovich, an ED doctor at Boston’s Beth Israel Deaconess Medical Center who studies ED boarding, told me. “It’s barbaric.”

Measuring the problem has been challenging because data on ED boarding time is limited. Only this past November did the Centers for Medicare & Medicaid Services finalize a rule that would require hospitals to collect data on ED boarding times. Using what other data he could find, Haimovich has shown that boarding for more than 24 hours has increased dramatically for people 65 and older since the pandemic.

Once they enter ED boarding, patients exist in a gray zone. There has been a national push to establish “safe staffing” in EDs. Even with that, if an ED boarder has a medical complaint that needs quick attention, it’s easy for them to fall through the cracks, Haimovich said: In some hospitals, an admitting team of doctors from upstairs is responsible for the boarders stuck in the ED (but not the associated floor nurses); in others, overstretched ED medical staff must take full responsibility to care for boarders until a bed opens — and that in addition to seeing new patients. Some EDs now routinely hold more boarders — many of them quite ill — than patients being actively evaluated.

Doctors and nurses have complained bitterly about the situation, which forces them to provide inadequate care. Gabe Kelen, the director of emergency medicine at Johns Hopkins University, told me it’s creating a for emergency department staff. But doctors and department heads such as Kelen are not in control of admissions. Generally, a hospital’s administration parcels out inpatient beds, and emergency department boarding is in many ways a result of today’s business models and pressures.

* * *

When I worked as a doctor, if an ED was overwhelmed beyond capacity, the attending (that was me) typically called in to ambulance dispatch to request “diversion” — ambulances should take patients to another hospital. If a hospital got too full, the admitting office canceled elective admissions. Today, hospitals run like airlines and intentionally overbook, Kelen said. They also have fewer beds than they did a few years ago — in part because nurse (and executive) salaries have risen since the pandemic. An empty, staffed bed is a money loser, so the institution has an incentive to keep beds full and make new patients wait.

“The problem isn’t inefficiency — it’s the way health care finance is structured,” Kelen said. “Hospitals typically run on thin margins. Elective admissions are prioritized because they tend to be for lucrative procedures like heart catheterizations and joint replacements.”

Admitting patients through the emergency room has business advantages, too, even if it means they wait for a bed. The evaluation generates charges that typically run many thousands of dollars; once admitted, my husband was still billed the inpatient rate even for a stretcher in the hall. Old, sick, and dying patients are more likely to linger there in part because, after they’re in a real bed, they may take up that spot for days or weeks at a time while waiting for a bed in rehab or hospice, requiring nursing time but not the types of interventions that generate revenue.

Hospitals have tried band-aid fixes, such as bed-tracking software and discharge lounges where patients can wait for paperwork or transport home. Many do hire more doctors and nurses and orderlies in the ER to confront the overflow. But “long ED wait times and boarding have root causes that extend far beyond EDs and hospitals themselves,” Chris DeRienzo, the chief physician executive at the American Hospital Association, told me in an email. He listed the high cost of opening beds and the shortage of rehabilitation facilities, and emphasized the precarious financial situation of many hospitals.

But while Andrej waited in the overflow area, we were not thinking of any larger picture: He was sick, desperate, and still waiting for care. He lingered in boarding for four days before he got a bed. Each time he had to return to the ED, each time he faced a painful wait, he hardened his resolve to never go back.

* * *

Thunk. Crash. “Elisabeth, help!” Those were the sounds that woke me at 2 a.m.

I had fallen asleep on our bed, next to Andrej, his head raised with a foam wedge to ease his breathing and make sure food would not come up. Before I dozed off, I listened to his breathing — 30 times a minute, two times faster than normal — a sign he was struggling to get sufficient oxygen. And that racking cough. This was not good.

Now his bruised body was twisted, lying on the floor with his head against the bed frame. He’d attempted to use his walker to go to the bathroom. He was complaining of chest pain, coughing and short of breath. But he managed to get out those words: “I will not go to the ER.”

I knelt by his side in tears, telling him that I loved him but that I could not do anything more right now at home. Carlos, our super, helped me get him into bed and called EMS. I promised Andrej (against hope) that, given his condition, he would surely be quickly assigned to a real room and bed.

What happened next was a blur. I have a vague memory of paramedics arriving, putting him on the stretcher, sliding him into the ambulance, giving him oxygen. I mechanically grabbed his “do not resuscitate” form from under the refrigerator magnet and buckled myself in beside him.

Then he was in the ED, which was thrumming with activity, under the fluorescent lights, with oxygen in his nose, wearing a hospital gown, and looking gray and sick. The staff asked what was, for them, the operative question about a guy with widespread cancer: “Does he have a DNR?” Andrej asked me what was, for him, the operative question: “Did you bring my shoes?” He already wanted to leave.

An X-ray showed possible pneumonia, more tumors, and a buildup of fluid in his lungs. A medical team that covers oncology patients wrote an admitting note — he was now a boarder, again — and then retreated upstairs. They started antibiotics and gave him something to help him sleep amid the alarms and shouting. He didn’t.

When I came back the next morning — and two mornings after that — I was alarmed to see him still there on a hard stretcher, his feet dangling off the end, exhausted and in pain. “When will he be admitted to a bed?” I implored. If some of the stuff in his lungs was infectious, maybe he could be treated and get home.

Likely soon and I hear your frustration — I came to detest those two phrases.

Neighboring patients came and went 24 hours a day. Some were pleasant; some were screaming in pain or just screaming mad. Pulmonary doctors came and, in this semipublic space, used a large needle to remove three liters of fluid from Andrej’s right lung cavity.

* * *

Near the end of the Biden administration, in response to a bipartisan congressional request, the Department of Health and Human Services convened a meeting on emergency department boarding. Its report, from HHS’ Agency for Healthcare Research and Quality, came out the same month that the Trump administration took office, not long before Andrej’s fall — the last night he spent at home.

“Emergency department (ED) boarding is a public health crisis in the United States,” the report concluded. “Patients who are sick enough to require inpatient care can wait in the ED for hours, days, or even weeks.”

“Boarding contributes to increased mortality, medical errors, prolonged hospital stays, and greater dissatisfaction with care,” the report said.

The meeting proposal called for the formation of an expert panel to recommend solutions. In theory, a panel could have weighed in on key questions: Should hospitals — some of which are rich institutions — get paid an inpatient rate for boarding in the ED? Should they have to report boarding times and face penalties for excess? Should they be required to open more real beds, and should requirements for licensing be lessened? How can the country create more rehabilitation beds?

But since then, the Trump administration has dramatically cut that HHS agency’s staffing, as well as its grant programs. (Congress is still pushing to fund the agency.) The expert panel never formed, let alone offered solutions. The Centers for Medicare & Medicaid Services this year did initiate that will include voluntary reporting of boarding times in 2027, becoming mandatory in 2028. Bad marks will eventually affect Medicare reimbursement.

In an emailed statement, the Joint Commission, which certifies the nation’s hospitals, called boarding a “serious public health crisis” and “one of the most incredibly complex challenges in healthcare.” Although the organization does indirectly look at hospitals’ “ED throughput” from charts, such data is not comprehensive. Little information exists, for instance, about how many people’s last days are spent on stretchers, in hospital limbo.

None of this knowledge would have helped my dying husband. So I did what I’d promised myself I’d never do: I called a doctor friend, who called the hospital’s VIP office.

Suddenly Andrej was whisked to a real hospital room, with a bed that he could adjust to keep his head elevated, a tray he could eat from, a morphine pump, a TV, a bathroom, and a nurse call button at his side. A room with extra chairs, so his stepkids and friends could visit with gifts and mementos one last time. A room where the caring staff placed a chaise longue, where I could sleep over. That way, when he woke scared and coughing and yelling for me, I was there to hold his hand, adjust the oxygen, and push the button for an extra dose of narcotic.

Until, six days after we got in the ambulance and three days after we’d moved to this room, he woke early one morning, agitated and coughing, calling out, “Elisabeth?” I was there. But then, in a blink, he wasn’t.

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Two bills moving through the state Senate seek to prevent immigration enforcement officers from isolating patients from their loved ones and interfering with their ability to get legal help. Analyses for both bills cite reporting by Ñî¹óåú´«Ã½Ò•îl Health News that found family members and attorneys have faced extreme difficulty locating and supporting patients hospitalized while in immigration custody.

Ñî¹óåú´«Ã½Ò•îl Health News found that some hospitals have facilitated patient isolation through what are known as blackout policies, which can include registering people under pseudonyms, withholding their names from the hospital directory, and preventing staff from contacting patients’ relatives to let them know their location and condition.

A bill by Democratic state Sen. Caroline Menjivar of the San Fernando Valley, , would largely prohibit the use of blackout policies for patients in immigration custody and ensure they retain the right to have their families and others notified of their whereabouts and condition. Blackout policies would be allowed when the health care provider determines the patient is a credible risk to themself or others and the risk is documented in the patient’s medical record. Patients would also be allowed to receive visitors.

It seeks to address reports of Immigration and Customs Enforcement agents guarding patients in their hospital rooms while they undergo medical exams or talk with doctors, interfering with medical decisions, and pushing for patients to be discharged prematurely to detention facilities ill-equipped to provide follow-up care.

“These are actions that have no place in health care, and it is a clear violation of the patients’ rights,” Menjivar said.

Under Menjivar’s proposal, agents would not be allowed into the rooms of patients they bring in for care unless they can show legal authorization to be there. If agents remain in the room, staff would be required to ask them to leave during medical exams and patient care discussions. If agents refuse, health care facility staff would need to document it.

, authored by state Sen. Susan Rubio, a Democrat from the San Gabriel Valley, would require health care providers to inform staff and relevant volunteers to respond when patients want their families to know where they are, and to post a notice at facility entrances with information about visitation and access policies. The law already says patients can agree to have loved ones notified they’re in the hospital, and Rubio’s bill seeks to make sure staff and others know they can do that for patients in immigration custody.

The federal Department of Homeland Security, which oversees immigration enforcement, did not respond to a request for comment.

Both bills were passed by the Senate Health and Judiciary committees along party lines and will be heard next by the Senate Appropriations Committee.

More than 20 immigrant rights advocates and health care workers voiced support for strengthened protections for patients at a hearing last week.

“This state must do everything in its power to protect against these abuses and ensure detainees have the right to contact their loved ones when they are hospitalized and in critical conditions,” said Hector Pereyra, political manager with the Inland Coalition for Immigrant Justice.

However, representatives from the California Hospital Association and California Medical Association told lawmakers last week they had concerns that directing health care workers to document agents’ badge numbers and ask them to leave patients’ rooms could create conflict and pose a safety risk.

“While we understand that this is an important issue, we want to ensure the bill strikes the right balance and does not create conflicting or unclear obligations for hospitals and their staff and clinicians, particularly in real-time interactions with federal officers,” said Vanessa Gonzalez, a vice president of state advocacy for the hospital association.

Ñî¹óåú´«Ã½Ò•îl Health News reported that one man, 43-year-old Julio César Peña, was held at a hospital in Victorville for almost two weeks before his attorney and family found out where he was. Peña, who had terminal kidney disease, was shackled to his hospital bed, guarded by immigration agents, and told he wasn’t allowed to disclose his location, according to his wife. He then suffered a seizure that left him intubated and unconscious, but no one notified his family. Peña died Feb. 25, less than two months after he was released to go home.

Advocates for immigrants and health care workers, as well as lawmakers, fear similar incidents are happening around the state.

Menjivar said her bill “seeks to close the gap between existing law and practice by empowering health care provider entities with the tools to uphold the privacy, health, and visitation rights of a patient brought in under immigration custody.”

SB 915 would prohibit hospitals and clinics from allowing immigration officers to make medical decisions for the patient or provide interpretation. Health care facilities would be required to document and verify, “to the extent possible,” the identities of immigration officers; provide patients access to communication tools; and inform patients of their rights. They would also need to complete discharge planning that includes attempts to coordinate with any receiving facility, such as a detention center, to ensure patients receive follow-up care.

The bills come on the heels of legislation passed last year that sought to limit immigration enforcement at health care facilities, including by prohibiting medical establishments from allowing federal agents without a valid search warrant or court order into private areas. However, that bill did not address situations in which patients are already in immigration custody.

“ICE has instilled fear in our hospitals and has kept us from doing our job,” said SatKartar Khalsa, an emergency medicine resident at a safety net hospital in San Francisco who has treated detained patients and testified in support of SB 915. “This has all led to worse care for our patients and has added another layer of fear among health care workers.”

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But physicians, dentists, ambulance companies, and other health care providers are still taking their patients to court, a Connecticut Mirror-Ñî¹óåú´«Ã½Ò•îl Health News investigation of state legal records shows.

Lawsuits by doctors and other nonhospital providers now dominate health care collections in Connecticut, the records show, accounting for more than 80% of cases filed against patients and their families in 2024.

That’s a major reversal from just five years earlier, when hospital system lawsuits made up three-quarters of health-related collection cases in the state’s courts.

The shift is moving medical debt collections into a less regulated realm. Most hospitals, because they are tax-exempt nonprofits, must make financial aid available to low-income patients and follow federal regulations that limit aggressive collection activities. Other medical providers, such as private medical groups, are generally exempt from these rules.

The lawsuits are typically over bills of less than $3,000, but the impact on patients can be devastating. Lawsuits are among the most ruinous byproducts of a health care debt problem that burdens an estimated 100 million people in the U.S.

Lawsuits can lead to garnished wages, liens on homes, and hundreds of dollars of added debt from interest and court fees. They also pile additional financial strains on struggling families, prevent patients from getting needed care, and sap trust in medical providers.

“It’s really messed up,” said Allie Cass-Wilson, a nurse in Bristol, Connecticut, who was sued over a $1,972 debt by an OB-GYN practice where she’d been a patient years earlier. “How can they do that to people?” She did not contest the lawsuit, court records show.

Cass-Wilson, who is 36 and lives in a small apartment just off an expressway on-ramp, said she learned of the outstanding debt only when she was sued. When she tried making an appointment, she said, she was told her doctor wouldn’t see her. “They said I was blacklisted,” Cass-Wilson said. “I was so confused. I couldn’t believe that my medical provider let my care be interrupted like this.”

Cass-Wilson ultimately sought medical care elsewhere.

Radiologists, Dentists, Ambulances

Overall, CT Mirror and Ñî¹óåú´«Ã½Ò•îl Health News identified more than 16,000 health care-related debt cases in Connecticut courts from 2019 to 2024. The database was assembled from online court records with the help of January Advisors, a data science consulting firm that helped extract and sort the data.

Over the six-year period, most of Connecticut’s more than 25,000 did not pursue patients in court for outstanding balances.

But records show that more than 400 medical providers, including several hospital systems, sued their patients. Among those filing lawsuits were radiologists, anesthesiologists, eye doctors, podiatrists, allergists, and pediatricians.

Dentists, periodontists, and other dental providers filed more than 1,000 lawsuits against patients. And ambulance companies sued more than 140 people.

Med-Aid, a company based outside New Haven, Connecticut, that provides orthopedic braces and other medical supplies to patients, sued more than 400 people, the court records show. The company’s president, Frank Dilieto, did not respond to repeated interview requests.

Cass-Wilson was sued by Briar Rose Network in Bristol, Connecticut, a member of a large network of OB-GYN practices across Connecticut called Physicians for Women’s Health. The network’s members sued close to 100 patients in 2024, records show.

Paula Greenberg, CEO of Women’s Health Connecticut, a private equity-backed company affiliated with Physicians for Women’s Health that manages business operations for the network, said the lawsuits represent a small fraction of the more than 300,000 patients the network sees every year.

“This is an organization committed to patients,” Greenberg said. She noted that the group offers options to help patients pay, including installment plans and financial aid.

Geoffrey Manton, president of Naugatuck Valley Radiological Associates, said his practice also will work with people who say they can’t pay. But, he said, patients sometimes stop responding to their bills.

“Hiding from your problems isn’t going to solve them,” Manton said. “If we didn’t take any action, there could be that person that is in that late-model Mercedes that just chooses not to pay any bills.” The group sued more than 125 patients from 2019 to 2024, according to the court records.

Many medical providers say that aggressive collections stem from the growing prevalence of high-deductible health plans that leave patients with thousands of dollars of bills before their coverage kicks in.

Greenberg and Manton said each of their physician groups must collect. “This is a business,” Greenberg said. “We have to look at our operating costs.”

Critics of medical collection lawsuits note that the patients are typically sued over relatively small debts that are likely to have little impact on multimillion-dollar medical practices.

The average patient debt that members of Physicians for Women’s Health sued over in 2024 was less than $1,100, court records show. The physician group’s annual revenues are typically in the tens of millions of dollars, according to Greenberg.

Even relatively small debts — which often include interest — can place substantial burdens on families struggling to keep up with their bills, especially while dealing with a serious illness, patient advocates say.

“We don’t have a realistic choice in using health care,” said Lisa Freeman, who heads the Connecticut Center for Patient Safety and has advocated for patients struggling with medical bills. “To then get sued for it, when people have less and less funds available for anything extra, that’s very disheartening.”

A Stroke, Then a Lawsuit

Matthew Millman, 54, lost his job as an IT support worker after having a stroke. Then Meriden Imaging Center sued him over an $1,891 bill.

Millman and his wife said they tried to explain their financial situation to the center, which is affiliated with Midstate Radiology Associates, a large physician group that operates imaging centers and doctors’ offices across Connecticut.

“It was very frustrating,” said Millman, who lives in an aging apartment owned by his wife’s family in New Britain. Millman, his wife, and their teenage daughter are barely getting by on his two part-time jobs — one bagging groceries, the other helping homebound seniors. Together, the jobs pay about $1,500 a month, he said.

The imaging center, after winning the collection case against Millman, tried to garnish his wages, though that was unsuccessful because Millman had lost his IT job.

“It’s all about money,” Millman said, shaking his head. “If you are trained in helping somebody with their health, it shouldn’t be about the money first. It should be about their health.”

Court records show that Midstate Radiology, Meriden Imaging Center and affiliates filed more than 1,000 collection lawsuits against patients from 2019 to 2024, making them the most litigious nonhospital providers in the state. As is common in medical debt lawsuits, the plaintiffs prevailed in most cases, records show.

Midstate president Gary Dee, a radiologist, didn’t respond to emails and messages left at his West Hartford office.

Across town from Millman’s apartment in New Britain, Joseph Lentz lives in a cramped apartment with his wife and daughter. He used to oversee operations at a Boy Scout camp but is now unemployed. Lentz lost his job during the pandemic. The family home went into foreclosure, he said.

In 2023, Orthopedic Associates of Hartford sued Lentz over a $3,644 bill the practice said he owed after having shoulder surgery in 2018.

“I’d pay it if I could, I guess,” said Lentz, 59. “But I don’t even know where next month’s rent is coming from. I’m trying to climb out as best I can. I guess this is just one more thing to shovel in.”

The orthopedic group filed more than 580 lawsuits against patients from 2019 to 2024, prevailing in most, records show.

The medical group declined interview requests. But chief executive David Mudano said in a statement: “As an independent physician practice, we strive to balance compassion for patients with the financial responsibility required to sustain our practice.”

Old Debts and Disputed Claims

Lentz, who did not contest the lawsuit, said he has no reason to doubt he owes the debt. But in many cases reviewed by CT Mirror and Ñî¹óåú´«Ã½Ò•îl Health News and in interviews, patients being sued questioned the accuracy of their medical bills, citing care they thought health insurance should have covered or, in some cases, bills for services they never received.

This reflects with aggressive collection tactics like lawsuits when disputes over the accuracy of medical bills and delayed or denied insurance claims are so widespread in American health care.

A by the federal Consumer Financial Protection Bureau found that nearly half of the medical debt complaints fielded by the agency involved bills that consumers said were erroneous in some way or that consumers said they’d already paid.

“We know people are billed incorrectly,” said Lester Bird, who studies debt collection lawsuits at the nonprofit Pew Charitable Trusts. Bird noted that courts are ill equipped to sort through disputed medical charges or insurance claims, especially when there is little documentation in most debt collection lawsuits.

“It’s complicated before it gets to the courts,” Bird said, “and it’s very complicated when it gets into the courts.”

This can create headaches for physicians and other providers. But billing problems ultimately affect patients and their families most, said Connecticut state Sen. Saud Anwar, a Democrat who is also a physician. “Patients are left to deal with it.”

Andrew Skolnick, an attorney in Milford, outside New Haven, was sued in 2023 by an imaging center where his wife had received services in 2020.

Skolnick said that when the couple, who were covered through his job-based insurance, originally received the bill from Diagnostic Imaging of Milford, he tried to tell the imaging center it had submitted the claim to the wrong insurance plan, but he said they wouldn’t speak with him.

The center later filed the lawsuit, alleging he owed more than $2,000, plus almost $300 in interest.

Despite interview requests, officials at Diagnostic Imaging of Milford did not comment for this article.

Unlike most patients who are sued, Skolnick had the resources and expertise to contest the suit. He said he offered to pay what would have been his responsibility under the plan if the imaging center had filed his claim correctly. He ultimately settled for $1,700, court records show.

“It wasn’t a tremendous amount, but I knew that they had made a mistake,” Skolnick said. “The system is not working.”

More Protections?

Anwar, the state lawmaker and physician, expressed concern that lawsuits undermine patients’ faith in their doctors.

“It’s a sacred relationship,” he said. “If your physician, who is taking care of you, is suing you for money, that’s a problem.

Many hospitals, facing bad publicity from suing patients, have stopped taking patients to court over unpaid bills. Hospital collection lawsuits identified by CT Mirror and Ñî¹óåú´«Ã½Ò•îl Health News in Connecticut court records plunged from more than 4,900 in 2019 to fewer than 300 in 2024.

Also, in recent years, several states, including Connecticut, have expanded protections for patients with bills they can’t pay.

Connecticut now from consumer credit reports, and legislators are pushing to get hospitals to provide more financial aid to patients. Other states have restricted the use of wage garnishment and property liens to collect medical debt.

But state efforts to rein in aggressive medical debt collections have mostly focused on hospitals. That may need to change, said Connecticut state Sen. Matt Lesser, a Democrat who co-chairs the legislature’s Human Services Committee.

He is a key backer of a bill that would bar hospitals from billing patients who receive public benefits like food assistance or who make less than twice the federal poverty level, about $32,000 for an individual.

The restriction would not apply to bills from physicians and other nonhospital providers, however. “We may have to go bigger if that’s where the heart of the matter is,” Lesser said.

Connecticut Gov. Ned Lamont, a Democrat who spearheaded an initiative to for more than 150,000 state residents, also expressed concern about physicians suing the people in their care.

“Everyone should do the right thing by patients,” he said.

This article was produced in partnership with , a statewide nonprofit newsroom that covers public policy and politics.

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HAY SPRINGS, Neb.— The sun was just warming the horizon as Mark Pieper left his house near his cattle ranch on a crisp February morning.

It’s not unusual for the rancher to wake up early to tend to livestock, but at 5:45 a.m. this day his cattle wouldn’t come first. For the past 3½ years, three days a week, Pieper has made an early-morning commute to get dialysis at the nearest hospital.

Pieper lives outside Hay Springs, which has 599 residents, according to a sign at the edge of town. He makes sure not to forget his chocolate-brown cowboy hat before starting up his pickup truck for the half-hour drive to Chadron.

That February morning was one of his last dialysis sessions there before the hospital shuttered the service at the end of March.

“I guess I’ll just bloat up and die in a month,” Pieper remembered thinking when he learned the center was closing, eliminating the only option near his home.

He needs dialysis to survive after cancer treatment damaged his kidneys.

Pieper and 16 other patients relied on Chadron Hospital for the life-sustaining therapy that filters waste and fluid from their blood — a job their failing kidneys could no longer do. Treatment lasts about four hours.

The closure is just one example of the long decline of health care services in rural America, where people have higher rates of many chronic conditions but less access to care than elsewhere.

The Trump administration promised to address this problem, when it launched the $50 billion federal Rural Health Transformation Program in September. It may not be enough to stop the trend.

“[President Donald] Trump says he is going to help the rural health care,” Pieper said. Dialysis “is one thing that we really need here.”

Some patients have moved to live closer to care, including several nursing home residents. Their new facilities may be farther from their families.

Others are making long drives to dialysis centers. Pieper eventually found treatment in Scottsbluff, which, with about 14,000 residents, is the biggest city in the rural Panhandle region of western Nebraska. The hour-and-a-half drive will triple his time on the road to more than nine hours each week.

Jim Wright and his wife reduced their drive time — but are spending more money — by renting a small home near Rapid City, South Dakota, and living there on weekdays so he can get dialysis. Wright said he understands that rural hospitals face financial challenges.

“But we’re talking about something that’s lifesaving. It’s not a matter of, ‘Oh, I would like to be there’” getting treatment, he said. “It’s a case that if you don’t, you die.”

An Influx of Money That’s Out of Reach

Jon Reiners, CEO of the independent, nonprofit Chadron Hospital, wrestled with the decision to end dialysis services. He and several patients said that the closure was announced as the $219 million the state will receive in first-year funding from the .

But the five-year program is aimed at exploring new, creative ways to improve rural health, not to help existing services stay afloat. States can use only up to 15% of their funding to pay providers for patient care.

At least 11 states — Nebraska is not among them — have mentioned using funding for rural dialysis programs, according to a Ñî¹óåú´«Ã½Ò•îl Health News review of applications. Their ideas include starting a mobile dialysis unit and helping people get treatment at home or in long-term care facilities.

Reiners said Chadron Hospital lost $1 million a year on its dialysis service due to low reimbursement rates that didn’t cover operational costs.

The facility is a critical access hospital, a designation that allows certain small, mostly rural hospitals to get increased reimbursement rates for their Medicare patients. While most of the affected patients were on Medicare, the critical access program doesn’t cover outpatient dialysis, Reiners said.

Reiners said the hospital worked for more than a year to find solutions, such as reaching out to four private companies to potentially take over the center. But he said they all passed after realizing they would lose money.

Nephrologist Mark Unruh said the dialysis closure in Chadron reflects a wider trend of staffing and funding challenges.

“You do end up in situations where you have people who are displaced like this, and it’s just sad,” said Unruh, chair of the Internal Medicine Department at the University of New Mexico.

People in rural America face significant disparities in kidney health and treatment, published in 2024 in the American Journal of Nephrology. They’re and face after diagnosis, according to data from the National Institutes of Health.

The best way to address this is to focus on prevention, Unruh said. He pointed to a that helps primary care doctors in rural and other underserved areas prevent end-stage renal failure.

Another idea, Unruh said, is boosting the rate of kidney transplantation for rural patients. He’s looking at whether it’s helpful to “fast-track” tests patients need to get approved for a transplant by scheduling all of them over a couple of days to limit travel time.

Unruh said the U.S. health system also needs to recruit more staff who can train patients and their caregivers to administer dialysis at home.

Exploring the Option of Home Dialysis

Rural dialysis patients are more likely than urban ones to get home dialysis, according to . In 2023, the rate was nearly 18% for rural patients and about 14% for urban ones.

One type of home dialysis requires surgery to get a catheter placed in the abdomen and . The other kind requires . The nearest facility to Chadron that offers training for the first option is in Scottsbluff. The nearest that offers training for the latter kind is three hours away in Cheyenne, Wyoming.

Pieper said doctors told him he’s not a candidate for home dialysis or a transplant. The Panhandle has a nonprofit, rural transit system, but its schedule won’t work for Pieper. He said that leaves him with no choice but to get treatment in Scottsbluff, a 200-mile round trip.

It takes Linda Simonson even longer — more than four hours round trip — to drive her husband, Alan, from their ranch to his treatment in Scottsbluff.

Linda sat in the waiting room with a yellow legal pad during one of Alan’s final treatments in Chadron. The paper was scrawled with phone numbers of politicians to call and driving distances to dialysis centers in the region. She said facilities closer to their ranch either don’t have room for new patients or lack good spots along the route to take a driving break in bad weather.

“It’s just unreal,” she said.

She said even if Alan took a bus, she’d have to ride along to support him during the trip and his treatment.

Jim and Carol Wright, the couple staying near Rapid City on weekdays, said they can’t afford to rent a second home forever. Their weekly commute is already taking a physical and emotional toll. They said they’ll eventually have to move to a bigger city, giving up the house they love in the scenic Nebraska National Forest.

Carol said she feels for the dialysis staffers in Chadron, who are wonderful.

“It just doesn’t seem right to sacrifice one unit that’s so vital,” she said while standing next to a pile of moving boxes stacked inside their rental.

The Wrights wrote letters to politicians and hospital leaders to share their concerns and ideas for keeping the unit open, including using the federal rural health funding.

Simonson said she spoke with aides for the governor and her state representatives but none of the leaders called her back.

“It feels like they don’t know that we exist at this end of the state,” she said.

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Other drivers stopped, broke the car window, and pulled him to safety. A passing volunteer firefighter performed CPR until an ambulance arrived to take Masterson to UPMC Mercy hospital.

He spent 18 days in the medical intensive care unit there, 14 of them on a ventilator. He developed delirium, a common ICU condition, and needed antipsychotic drugs. Despite a feeding tube, he lost weight. “We honestly weren’t confident that he would pull through,” said Ron Dedes, his brother-in-law.

But he did. Masterson was discharged Feb. 1 and returned home with near-constant family support. Working diligently with several kinds of therapists, he has regained his ability to walk, despite lingering weakness, and to manage his personal care. His once-garbled speech has markedly improved. He can make himself a sandwich.

Now, “our biggest concern is his memory,” Dedes said. Masterson, who so recently handled complex legal matters, forgets conversations and events that happened a few hours earlier, said Patti Dedes, his sister. He can’t yet operate a microwave or place a phone call.

In an interview, he described himself, accurately, as “much, much better than I was” — but misstated his age. Screening tests after his discharge indicated cognitive impairment and depression.

Among critical-care doctors, prolonged symptoms like his are known as “post-intensive care syndrome,” or PICS. The fallout can be physical or psychological, as well as cognitive, and can persist for months or years.

More than are admitted to intensive care across about 5,000 American hospitals, and research shows that . Older age increases the odds.

Patients and families are often startled by these continuing difficulties. “The belief is that they’ll be discharged from the hospital and in two or three weeks, they’ll be back to normal,” said Brad Butcher, who was Masterson’s doctor and in the medical journal JAMA. “That doesn’t comport with reality.”

In fact, with greater ICU use and improved treatments — the Society of Critical Care Medicine estimates that their stays — the population likely to encounter the syndrome is growing.

“Everyone is grateful that the patient has survived,” said Lauren Ferrante, a pulmonary critical-care doctor and researcher at the Yale School of Medicine. “But that’s just the start of a long road to recovery.” In a study of patients 70 and older that she co-authored, within six months after discharge only about half had .

Intensive care patients face a . PICS symptoms — weakness, pain, neuropathy (tingling in arms and legs), and malnutrition — to , primarily anxiety and depression. like Masterson’s are commonplace, including problems with memory, attention and concentration, and language.

“For many people, surviving a critical illness is a life-altering experience,” Butcher said. Patients in intensive care after emergency or elective surgery also of new physical, mental, and cognitive problems a year later.

The same aggressive treatments that save lives contribute to the syndrome. Intensive care patients “have some sort of dramatic organ failure that requires immediate attention” and constant monitoring, explained Carla Sevin, a pulmonary critical-care doctor who directs the ICU Recovery Center at Vanderbilt University Medical Center.

That could mean a breathing tube attached to a ventilator, which in turn often requires sedating drugs. Sedation “can precipitate delirium, and delirium is the key factor in cognitive symptoms,” Butcher said.

It doesn’t help that constant beeps and alarms from monitors and round-the-clock bright lighting disrupt sleep, and that restrictive family visiting hours deprive patients of reassuring faces and voices.

Gregory Matthews, a retired accountant in St. Petersburg, Florida, spent nearly a month in an ICU after a lung transplant in 2014. He still vividly remembers his hallucinations, including mice running across the wall and someone trying to frame him for drug running.

“One day, I thought a doctor was an assassin — I could see the rifle,” said Matthews, now 80. “So I jumped out of bed,” he said, and yanked out his IVs. The staff put his arms in restraints for days.

But immobilization exacts its own toll as patients quickly lose muscle mass and strength. “Our bodies were not meant to lie in bed all day,” Ferrante said.

Psychologically, “PTSD is pretty common, similar to what’s seen in combat veterans or sexual assault survivors,” Sevin said, referring to post-traumatic stress disorder. Families can suffer anxiety and depression along with the patients.

Alarmed by such discoveries, doctors and administrators at about 35 U.S. hospitals have established , where teams of doctors, nurses, pharmacists, therapists (physical, occupational, cognitive, speech), and social workers screen for a host of conditions and help guide patients through them.

Vanderbilt’s clinic saw its first patient in 2012. The Critical Illness Recovery Center at the University of Pittsburgh Medical Center, which Butcher founded in 2018, works with about 100 patients a year, including Masterson. Yale opened its clinic in 2022.

They rely on six practices recommended by the Society of Critical Care Medicine that are shown to . The measures call for changes such as using lighter sedation, getting patients up and moving earlier, testing their breathing daily to wean them from ventilators sooner, and removing restrictions on family visiting.

Clinics often offer support groups for patients and families. There’s evidence that keeping an ICU diary, in which patients and caregivers record their experiences, and engaging in exercise and physical rehabilitation after discharge.

Also on the clinics’ agenda: discussions of what other options patients might prefer if they face another critical illness, as many do. Would they agree to undergo intensive care and risk its aftereffects again? Or choose palliative care, which emphasizes comfort rather than cure? Some post-ICU patients remain permanently impaired.

Butcher, although he said that the use of the new practices needed to expand dramatically, sounded optimistic about the future of critical care. “We’re going to find better diagnostic tools, better preventive strategies, and better therapies,” he said.

For now, though, the ICU experience remains disorienting and sometimes traumatic. When Butcher asked 117 patients in his post-ICU clinic those next-time questions, many wanted to place limits on further medical interventions.

About a third would want to lower the level of aggressive care. Of those, about a quarter would want “do not resuscitate” and “do not intubate” orders, and almost 7% said they never wanted to return to an ICU.

Masterson is working hard to further his recovery. “I haven’t been out and about much,” he said. “I’ve been kind of homebound.” He hopes to get strong enough to resume running — he used to log 3 to 4 miles several times a week.

The future for patients contending with post-ICU syndrome often depends on their physical, mental, and cognitive health before their admission. Masterson’s previous fitness and cognitively demanding work bode well for his further progress, Butcher said.

His family remains alternatively hopeful and worried. “Down the road, what’s it going to be like?” Dedes, his brother-in-law, wondered. “We just take it day by day.”

The New Old Age is produced through a partnership with .

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It’s one of the many parts of the 25-bed rural hospital that need updating, former CEO Ron Wiens said.

He said the hospital, an essential service in its namesake town of nearly 800 residents in the state’s sprawling north-central high plains, needs at least $1 million for deferred maintenance, including a failing HVAC system. But the facility has struggled to make payroll each month and can’t afford to make all the fixes, Wiens said.

Built by farmers and ranchers in 1965, Big Sandy Medical Center began with nine beds. Today, a similar community effort — donations and grants to plug financial holes each year — keeps it afloat.

Wiens, who recently left his position at the hospital, said he wishes Big Sandy could get funding from Montana’s share of the $50 billion federal Rural Health Transformation Program to renovate the hospital and direct payments to help secure its future. The state received more than $233 million in its first-year award.

But the hospital may not get the kind of help he sought.

That’s because the five-year program focuses on new, creative ways to improve access to rural health care, not on directly funding services and renovations. And Montana is one of at least 10 states whose leaders say projects launched under the federal program could lead rural hospitals to cut services so they can continue to afford to offer emergency and other essential care.

Congressional Republicans created the fund as a last-minute sweetener to their One Big Beautiful Bill Act, signed into law last summer. The funding was intended to offset disproportionate fallout anticipated in rural communities from the law, which is expected to slash Medicaid spending .

includes programs to make it easier for rural residents to get medical care and live a healthy lifestyle. For example, it says funding can be used to start community gardens, train paramedics to make home visits, open school-based clinics, or bring mobile clinics to rural areas.

rural Montana hospitals can receive payments for implementing recommendations, “including right-sizing select inpatient services” to match demand. In some cases, it says, right-sizing might mean “downsizing.” The state says hospitals will have input and recommendations will be specific to each facility.

“That’s what has all the hospitals on pins and needles, words like restructuring, reducing inpatient beds. Everybody is going, ‘What is this going to look like?’” Wiens said.

The Montana Department of Public Health and Human Services declined to answer questions about how it will carry out its right-sizing efforts.

A Lifeline of Care

Big Sandy cattle rancher Shane Chauvet doesn’t want any services cut.

He credits Big Sandy Medical Center with saving his life after a flying piece of metal nearly cut off his arm during a windstorm a few years back.

“I looked over, saw it coming, and whack!” Chauvet recalled.

His wife drove him to the hospital, where they frantically pounded on the ER door while Chauvet’s blood pooled on the ground.

Because of the storm, staffers worked on Chauvet with no power and no ability to summon a helicopter. He was then taken by ambulance 80 miles through intense rain and hail to a larger hospital.

Chauvet understands the state’s plan doesn’t call for eliminating emergency care, but he worries that reducing other services would set off a downward spiral for the hospital and his town.

In Oklahoma, realigning clinical services could mean “shutting down service lines,” to the federal program. And in Wyoming, any facility that receives funding must agree to “reduce unprofitable, duplicative or nonessential service lines,” .

Monique McBride, business operations administrator at the Wyoming Department of Health, said the department interprets right-sizing as helping rural hospitals provide essential services — such as emergency departments, ambulance services, and labor and delivery units — while maintaining long-term, financial stability.

“This might involve limiting some elective procedures that could be done at lower cost in higher-volume facilities. The main distinction here is time-sensitive emergencies vs. ‘shoppable’ services,” she said.

A New Lease on Life?

Seven of the 10 states — Nebraska, North Dakota, Tennessee, Kansas, Nevada, South Carolina, and Washington — where rural hospital service cuts are on the table say they’ll help pay for hospitals to convert to Rural Emergency Hospitals. The recently created federal designation requires hospitals to halt inpatient services and offers enhanced payments to help them maintain emergency and outpatient care.

At least 15 additional states wrote that they’ll use the federal funding to right-size, evaluate, or adjust services — which could mean adding or taking away services, or transitioning them to a telehealth or outpatient setting.

Brock Slabach, chief operations officer of the National Rural Health Association, said, “There’s a proper concern from rural hospital administrators that this funding is not going to where it was intended.”

He said cutting services that lose money could backfire in the long run. For example, he said, halting labor and delivery care might drive more people out of small towns, further reducing hospitals’ patient numbers and revenue.

The type of hospital services that states will assess matters, said Tony Shih, a senior adviser at the Commonwealth Fund, a nonprofit focused on making health care more equitable.

“If the end result is that high-margin services are taken away from local hospitals with nothing given back in return, it can be financially harmful,” he said.

Shih noted that states’ plans to add more outpatient care could prove beneficial for patients. It’ll take time to know which states help stabilize rural hospitals, he said.

Rural hospital leaders say they know which changes would keep their facilities open and that states shouldn’t suggest or mandate service cuts and other changes on their behalf.

Josh Hannes, who oversees rural health policy at the Colorado Hospital Association, said “top-down” directives won’t work.

He said the association’s members believe they can find efficiencies and are eager to collaborate. But “a state agency shouldn’t be making those determinations,” he said.

Hannes said members are worried Colorado’s plan to classify rural health facilities as a “hub, spoke, or telehealth node” will compel service reductions. The classification will help determine “which services are sustainable locally and which are best provided regionally or through telehealth,” .

Spokespeople for the Colorado and Oklahoma health departments said no facility will be forced to end services. But Oklahoma spokesperson Rachel Klein said some facilities might choose to do so as part of a broader effort to make sure they’re meeting community needs while remaining financially stable.

“A hospital might shift certain services to a nearby regional provider with higher patient volume and specialized staff while expanding other local services,” such as primary, outpatient, or community-based care, she said.

Wiens and Darrell Messersmith, CEO of Dahl Memorial Hospital in the southeastern Montana town of Ekalaka, said they worry the only way hospitals will get their share of funding is to cut services or become Rural Emergency Hospitals that don’t offer inpatient services.

“I would hate to see things shift toward a pack-and-ship facility,” Messersmith said. “Right now, we function quite well as an inpatient facility.”

Not all Montana health leaders are worried.

Ed Buttrey, president and CEO of the Montana Hospital Association, said he thinks his state’s plan could help rural hospitals become financially sustainable and survive Medicaid cuts. Buttrey is also a Republican state lawmaker.

Chauvet, the Big Sandy rancher, said his perspective on whether remote towns like his should have a hospital is forever changed because of his accident.

“I always would say, ‘Oh, they’re nice to have,’ but now I look at the hospital and say, ‘That’s essential to our community,’” he said.

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Ñî¹óåú´«Ã½Ò•îl Health News senior correspondent Renuka Rayasam discussed the Ñî¹óåú´«Ã½Ò•îl Health News series “Priced Out,” which focuses on the health insurance crisis, on An Arm and a Leg on March 19.

• (starts at 21:03).
• Read Rayasam’s “When Health Insurance Costs More Than the Mortgage.”

Ñî¹óåú´«Ã½Ò•îl Health News rural health reporter Andrew Jones discussed the spread of measles across the Carolinas on WUNC’s Due South on March 17.

• Read Jones’ “Hospitals Fighting Measles Confront a Challenge: Few Doctors Have Seen It Before.”

Céline Gounder, Ñî¹óåú´«Ã½Ò•îl Health News’ editor-at-large for public health, discussed on CBS News 24/7’s The Daily Report on March 16 how U.S. hospitals and insurers are turning to AI to settle disputes over medical claims and payments. On March 17, she outlined the court ruling blocking the Trump administration’s vaccine policy changes for children on CBS News’ CBS Mornings. Gounder also discussed Susie Wiles’ decision to stay on as White House chief of staff amid breast cancer treatment on CBS News 24/7’s The Takeout on March 16.

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Raven’s case reveals a little-known gap in the U.S. donation system: There is no clear, nationally binding way to opt out — or to ensure a later “no” overrides an earlier “yes” in a different state.

This gap, along with a range of other issues related to the organ procurement system, has become a point of bipartisan congressional concern. Late last year, the House Ways and Means subcommittee on oversight examining what members described as shortcomings, including alleged consent failures.

The panel’s scrutiny of organ procurement organizations, or OPOs, and their consent practices is a first step toward a more meaningful accountability plan that could help maintain trust across the system, according to some committee staff members.

The trust in our organ procurement and transplant system “has been eroded,” said Rep. Terri Sewell of Alabama, the panel’s senior Democrat, calling for stronger transparency and oversight to rebuild public confidence.

“Respect for autonomy — our ability to make our own decisions (self-determination) — allows for both ‘yes’ and ‘no’ decisions and for changing one’s mind,” Margaret McLean, a bioethicist at Santa Clara University, said in an email.

“Medical decision-making is not well served in a context of ambiguity,” she said.

And if a donor revokes consent, she added, “revocation by that person should carry the same ethical and procedural weight as the initial authorization, perhaps more.”

Raven Kinser Changed Her Mind

Raven was 25 when she died. Her parents, Jeff and Jaime Kinser, were at home in Michigan when they received the phone call that shattered their world. They drove through the night to the Newport News hospital, where they learned Raven’s disposition had been referred to LifeNet Health, the region’s federally designated OPO. LifeNet a failing OPO by the Centers for Medicare & Medicaid Services, meaning it doesn’t meet the government’s standards for how well it finds donors and recovers usable organs for transplant compared with other organizations.

Under federal law, hospitals are required to refer deaths and imminent deaths to OPOs, which take responsibility for donation-related decisions and discussions.

OPOs occupy a hybrid position in the health care system, as private nonprofit entities that hold exclusive, federally authorized contracts to recover organs within defined regions. They are regulated by CMS and overseen by the Health Resources and Services Administration, but that oversight occurs primarily through certification standards, performance metrics, and periodic audits rather than routine public disclosure requirements. With donor registries largely managed at the state level and no unified federal reporting requirement for removals, comprehensive national data on revocations is elusive.

OPOs are meant to separate bedside care from organ procurement decisions — to help prevent conflicts of interest and preserve the trust that decisions about life-sustaining treatment are made solely in the dying patient’s interest. But the , leaving families unsure who is in control if and when conflicts arise.

The Kinsers, for instance, felt their daughter would not have wanted to go through the donation process, but, at the time, had no evidence. Jaime remembers telling her husband that Raven would have been mad at them for letting it happen. In an effort to stop it, Jaime inquired about whether she would be asked to sign a consent form. But a LifeNet staff member told her that wasn’t an option because donation was Raven’s “living will,” Jaime said. Meanwhile, Raven’s parents said, her personal effects, including her Virginia driver’s license, which bore no donor designation, had not yet been turned over to the family, leaving them no meaningful way to challenge LifeNet’s determination in real time.

Jaime struggled with this outcome, even mentioning in Raven’s obituary that she was an organ donor. “How would you try to make peace with something that you felt was so wrong but had no proof?” Jaime said.

Two months passed before the Kinsers gained possession of the license, which, as they had expected, showed that Raven had not opted to be an organ donor.

According to the Kinsers, LifeNet staff told them that Raven’s status as a registered donor was established by her designation on her older Michigan license.

An emailed statement attributed to Douglas Wilson, LifeNet executive vice president, said the OPO follows federal law on organ donation, the , and queries applicable state donor registries, relying on time stamps and governing law to determine the , legally valid expression of intent. Under that framework, a prior donor authorization remains enforceable unless a valid revocation is recorded in the regional OPO’s donor registry.

Because of privacy laws, Wilson said, LifeNet could not comment on the specifics of any individual case.

Raven Kinser’s choice not to be a donor when she applied for a Virginia license in July 2024 was not reflected in the registry LifeNet consulted, according to her parents, who said that is what the organization told them. According to Lara Malbon, executive director of Donate Life Virginia, which manages the state’s organ donor registry, if someone changes their donor status while completing a Virginia driver’s license or ID transaction, “that information is sent to our registry, and the registry is updated daily to reflect those changes.” Malbon also said Virginia’s registry includes only people who have “affirmatively said ‘yes’ to becoming an organ, eye, and tissue donor, and it retains records solely for those who have made that decision.”

The Kinsers said they were never told why Raven’s Virginia DMV record was insufficient, or how an older yes from Michigan could outweigh a newer no in Virginia.

In December, the Kinsers filed a complaint with the Health Resources and Services Administration, urging federal regulators to investigate LifeNet’s actions and require OPOs to provide families with documented proof of the donor’s current status at the time of referral. They also called for OPOs, which operate as federally designated regional monopolies but are structured as private nonprofits, to be made subject to public records laws.

When Opting Out Doesn’t Stick

Such confusion is not unique to the Kinser family. It is a consequence of the organ donation consent process in the United States.

“I have also wondered that: why there’s not just one” registry for organ donation, Jaime said. If you go to get a firearm, you have one federal registry, she said.

Here’s how the system works: Americans typically register their organ donation intentions when they apply for driver’s licenses through state DMVs, and that decision remains governed largely by state law. That has led to 50 different sets of rules and very little federal regulation of what has become an in the U.S.

In some states, a donor checkbox is a binding legal document. In other states, the same choice may have different rules about when it takes effect, what it covers, and how it can be revoked.

Those differences can be big. State rules determine whether a person’s “gift” is limited to transplantation or also includes research and education. They determine whether the donation authorization includes tissue. And they can determine what counts as a valid revocation and when it is legally recognized.

Because of the system’s fragmentation, though, signals can cross when someone changes their mind, like Raven; it’s not always reflected from one state system to another.

Under state versions of the Uniform Anatomical Gift Act, a donor’s most recent legally valid expression of intent is meant to control.

“Personal autonomy is paramount to everything,” said Adam Schiavi, a neurointensivist who studies end-of-life decision-making. “If I say I want to be a donor, or if I say I don’t want to be a donor, that has to take precedence over everything else.”

But states differ in how revocation must be recorded and which registry is considered authoritative if someone has lived in more than one state. Those inconsistencies can create uncertainty when records conflict across jurisdictions.

“It has to be the most recent expression, not the most recent yes,” Schiavi said.

In Michigan, a change to someone’s donor status is reflected immediately in the secretary of state’s system, but only affirmative “yes” registrations appear in the registry. Removal information remains in internal motor vehicle records. In Virginia, the state registry includes only those who have affirmatively said “yes,” retaining records solely of donors, creating potential gaps if someone believes a DMV change alone is sufficient.

Elsewhere, processes and volumes differ sharply. New Mexico updates driver records in real time but does not transmit status changes to its donor registry. Instead, donor services receive restricted search access. The state logged nearly 15,000 removals in late 2021 and almost 30,000 in 2022. Florida, which maintains formal removal records through weekly DMV data files, reported 356,161 removals in 2020, more than 1.5 million in 2023, and over 1.2 million in 2025. Kentucky processed 847,371 donor registrations from 2020 to 2025, but only 16,043 icon removals, with registry withdrawal handled separately. In 2025, more than 570,000 Texans opted into the registry, while over 31,000 individuals requested removal.

According to a federal official who asked not to be identified for fear of professional repercussions, OPOs have been highly effective at lobbying states to broaden the definition of consent and authorization — shaping how those terms are applied, whether those statuses must be renewed, and how easy or difficult it is for someone to opt out.

In subsequent correspondence with federal officials, the Kinsers have urged reforms to prevent OPOs from relying on older registry entries when a more recent state DMV record exists, and they have called for criminal penalties in cases in which consent is knowingly misrepresented. Federal regulators have not indicated whether such proposals are under consideration.

Congress Takes a Closer Look

Ethicists have long cautioned that consent must be more than a checkbox and must remain grounded in respect for the donor-patient. In an October on organ transplantation, the American College of Physicians emphasized that clinicians’ primary duty is to the patient in their care, and that maintaining trust requires transparency and safeguards to prevent conflicts of interest from blurring that “bright line.”

Advocates say those steps leave unresolved the core problem raised by the Kinser family: the lack of a clear, legally binding way for people to say “no” and for that decision to follow them across state lines.

The said it “supports strengthening donor registries and enhancing registry interoperability to ensure that an individual’s documented donation decision is honored.” But OPOs have also argued that current policies protect donation as a legally enforceable gift and prevent families from overriding a loved one’s “yes” in the midst of grief. They argue that stronger, more durable consent helps reduce missed donations and saves lives.

Congress and federal regulators are considering changes to the nation’s organ donation system, including how consent is recorded and what should happen when a donor changes their mind.

Sen. Ron Wyden (D-Ore.) last year to create new federal standards for patient safety, transparency, and oversight of organ transplants, including a formal authorization for hospital or OPO staff to pause harvesting if there is any “clinical sign of life.”

HHS press secretary Emily Hilliard said the agency is “committed to holding organ procurement organizations accountable” and to “restoring integrity and transparency” to organ donation policy, calling reforms essential to informed consent and protecting donor rights. CMS issued related March 11, but it does not address the problems highlighted by the Kinsers’ case.

Critics of the organ transplant system say it is difficult for families to obtain documentation or independently verify how consent determinations were made in disputed cases.

HRSA has launched a sweeping modernization of the Organ Procurement and Transplantation Network, the national system that oversees organ allocation and transplant policy. Federal officials have described the overhaul as the most significant restructuring of the transplant system in decades, aimed at breaking up a long-standing contractor monopoly, strengthening patient safety oversight, and replacing aging technology infrastructure.

Central to that effort is modernizing the OPTN’s data systems: improving interoperability, audit trails, and transparency in how decisions are documented and reviewed. A more modern federal data architecture could make it easier to trace which registry was queried, what time stamp controlled, and how a consent determination was reached in disputed donations that span multiple states. But the modernization effort would not change the underlying state-by-state legal framework for donor authorization and what counts as a valid “no.”

Meanwhile, Donate Life America, a national nonprofit that supports state donor registries, also runs the , a central database that allows people to sign up as organ donors directly. Unlike many DMV systems, the national registry lets people log in at any time to view, update, or remove their registration and print proof of their decision. The group is also starting a project to let participating states send registrations directly into the national system, creating one place to track donor sign-ups and removals across state lines.

Each of the proposals comes with trade-offs, and both advocates and OPOs have raised concerns about how they would work in practice.

“Just doing a dump truck dump of information is not going to do much unless you really apply it through checking and auditing,” said Arthur Caplan, a professor of bioethics at New York University’s Grossman School of Medicine. “It could be like the IRS. They don’t have to audit everybody. Just do a spot audit once in a while.”

The Kinsers aren’t opposed to organ donation itself. They celebrated Raven’s donation in her obituary, and in their complaint to federal regulators, they wrote, “We are NOT anti-organ donation, and we will never take away the gift of life our oldest daughter gave to others. However, that was not LifeNet’s choice to make.”

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It was “just like a mosquito bite, nothing major, and I just scratched it,” said Toska, a political science professor.

Then she began to itch everywhere. She couldn’t see anything in the dark, so her husband shined his phone light on her.

She was covered in hives.

Because she also felt pressure in her chest, the family quickly went to an urgent care clinic. A doctor there recognized she was experiencing , a life-threatening, fast-moving allergic reaction.

The doctor rushed her to a room without checking her in, saw her blood pressure was low, and administered two epinephrine injections and IV fluids, Toska said. The itching stopped, and the tightness in her chest went away.

But the doctor said she needed to be monitored in an emergency room for at least two hours in case the reaction flared up again. Toska said the doctor insisted she take an ambulance to a nearby hospital, Atrium Health Lake Norman.

Minutes later, she found herself lying on a stretcher in the ER.

A doctor she described as “lovely” came in and spoke to her for no more than five minutes, Toska said. A nurse administered medicine through the IV line inserted at the urgent care clinic.

Toska was exhausted, but her mind was on her daughters. “I had two little kids who were scared, so I was playing with them and trying to distract them.”

After about an hour and a half, the doctor returned briefly, then the family went home, she said.

“That’s it,” Toska said. “Nothing happened at the ER.”

Then the bill came.

The Medical Service

Toska said the ER doctor reviewed her vitals and discussed her allergic reaction and what to watch for when she got home. She also received a dose of famotidine, a drug often used to treat an upset stomach that is also administered for allergic reactions.

The Bill

The in-network hospital system charged Toska’s insurer, Blue Cross Blue Shield of North Carolina, $6,746.50 for the ER visit, including $20.60 for the famotidine and $6,445.60 in “critical care” charges. Toska, who had not met her insurance deductible, was responsible for a $150 copay and $3,100.24 of the charges.

The Billing Problem: Critical Care

“Paying $3,100.24 for literally sitting in the ER entertaining my kids for an hour and a half feels kind of incredible,” Toska said.

Medical providers in the United States use a uniform coding system to bill for procedures and services. Most of Toska’s ER charges stemmed from Atrium Health’s use of two billing codes for “critical care” — one for 30 to 74 minutes of care, at $5,617.85 (code 99291), and another for an additional 30 minutes (code 99292), at $827.75.

According to the coding system, critical care is when a doctor “directly” provides at least 30 minutes of care to a patient with “a probability of imminent or life-threatening deterioration.”

According to the ER’s visit notes, which Toska shared with Ñî¹óåú´«Ã½Ò•îl Health News, Toska told the doctor there she was feeling “significantly better” when she arrived, and the doctor reported providing 90 minutes of personal critical care.

Anaphylactic shock is treated under code 99291, according to the . Though Toska’s symptoms may have indicated she was no longer in shock, treatment guidelines require at least two hours of monitoring, said Arjun Venkatesh, the chair of emergency medicine at the Yale School of Medicine.

With anaphylaxis, “some people are going to progress and require admission to the ICU, and some won’t,” Venkatesh said.

Toska was under critical care because of what could have happened, not what did happen, Venkatesh said. Hospitals use the same billing codes for the ER visit, whether a patient’s condition deteriorates or not.

“The billing rules are not built around this,” Venkatesh said.

Laura Eberhard, a spokesperson for Blue Cross Blue Shield of North Carolina, said Toska’s claims “were submitted by the provider using critical care codes, which represent a higher level of severity and reimbursement, and were processed in-network under the terms of the member’s plan.” She did not answer questions about whether Blue Cross Blue Shield negotiated the charges.

A spokesperson for Atrium Health did not answer questions from Ñî¹óåú´«Ã½Ò•îl Health News about Toska’s visit.

The Resolution

Toska said she called Blue Cross Blue Shield of North Carolina, trying to get a better explanation for why the bill for so little hands-on care was so high.

“The doctor determines the severity of the situation, and that’s the code we have,” the insurance representative said, according to Toska’s recollection. “This is critical care, and that’s what it costs.”

After Toska contacted the hospital, Atrium Health’s Audit and Appeals Department replied in a letter that the critical care designation was “based on the presenting problem that brought you to the emergency room, the treatment provided, and the nursing staff that took care of you.”

“It also includes the room, supplies, and equipment utilized during the visit,” the letter continued. “The charge is not based on time spent in the facility or with clinicians.”

Asking why the ER visit cost so much was more a matter of principle than necessity, she said, though she thought back a few years to a time when it would have been much harder for her to pay.

“The system is so broken,” Toska said.

The Takeaway

“Her experience is, sadly, very typical,” said Barak Richman, a professor of business law and co-director of the Health Law and Policy program at George Washington University. “Once you are brought onto the train of health care delivery, you have no control over where the stops are.”

Emergency rooms — for many the for medical care — are notorious for high costs, he said, adding that insurance companies should always try to negotiate critical care codes.

Toska was fortunate to dodge another problem common in emergencies: The bill for taking an ambulance to the ER was about $275, she said, notable since ambulance rides frequently result in bigger bills that may not be covered by insurance.

Patients can dispute charges with their insurance and the hospital. Like Toska, they should come to the phone with an itemized bill, medical records, and any other relevant documents, such as explanation-of-benefits statements.

Regardless of whether that’s a fight they can win, some who see one ER bill , especially if it might put them in .

In early March, Toska had a second allergic reaction. “OK,” she recalled thinking, “Do I go get the EpiPen? Do I go to the ER and get another massive bill?”

She decided against the trip and took Benadryl instead.

Bill of the Month is a crowdsourced investigation by Ñî¹óåú´«Ã½Ò•îl Health News and that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

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Céline Gounder, Ñî¹óåú´«Ã½Ò•îl Health News’ editor-at-large for public health, discussed the increase in hospital visits during tick season on CBS’ CBS Mornings on April 20. On April 18, for CBS News’ The Daily Report, Gounder discussed how some health podcasts generated by artificial intelligence are spreading misinformation. She also spoke with Scripps News about President Donald Trump’s nominee to lead the Centers for Disease Control and Prevention, Erica Schwartz.

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“I will not go to the emergency room” — emphasis on not — were his first words after passing out, having a seizure, or regurgitating the protein smoothies I made to pass his narrowed esophagus. He said it again and again, even as fluid built up in his lungs, rendering him short of breath and prone to agonizing coughing spells. He had been a big, athletic guy, but now, in the ugly process of dying, he was looking gaunt. Ours was a precarious existence, but I understood his adamant rejection of the emergency department. Most prior visits had morphed into extended trips into a terrifying medical underworld — to a purgatory known as emergency department boarding.

I managed to keep Andrej at home while we planned for hospice, until one dreadful night at 2 a.m., when I ran out of hacks. We got into an ambulance and together headed to the hospital.

* * *

We had already learned the hard way that if you need admission to the hospital, you can remain in the emergency department — in the hallway or a curtained bay on a hard stretcher or in a makeshift holding area — for more than 24 hours, even for days, while waiting for a real hospital bed. In this limbo state, you’re technically admitted to the hospital, but still located in the physical domain of the ER. And the rules governing acceptable care and safety measures become much less clear.

In the summer of 2024, still being treated to keep his cancer at bay, Andrej had suddenly become somewhat delirious, requiring hospital admission to rule out the possibility of infection or, worse, of the cancer having spread to his brain. After we went to an emergency department near our home, in New York City, he lay trapped on a hard stretcher, with its rails up, for more than 36 hours, amid the alarms and calls for the code team, without any clues of whether it was day or night, and with access only to the few toilets shared by the dozens of patients and visitors in the emergency room. None of this helped his mental state. By the end of Day 2, he knew me — kind of — but had become convinced that the doctors were “the enemy” and that I was their paid accomplice.

After I pressed to move him to a bed “upstairs” — I meant to an inpatient ward — he was transported to a bed five floors higher. I realized too late that this was an “ED overflow area,” according to the paper sign attached to the entrance’s swinging door. A plaque in the hall identified it as a former labor and delivery floor. It had been kitted out with some of the trappings of an actual ward, such as real beds and bathrooms, but not the most important one: adequate personnel.

The space was by turns eerily quiet and wildly cacophonous. Although patients there were undergoing intimate, embarrassing procedures, rooms were gender-neutral. That first night, Andrej’s roommates were a man in a coma and an elderly French woman in a diaper and boots (no pants), who marched around her bed singing like a chanteuse. In the morning, I pestered a harried nurse and got Andrej moved to a quieter room with three beds, where two people died in three days.

The overworked staff did the best they could, but that was far from good care. My husband — who needed protein and calories but could consume only soft foods — was served chicken cutlets. When I noted to one nurse that Andrej’s soiled sheets hadn’t been changed for several days, she directed me to a linen cart so I could change them myself.

* * *

That first time, one of several extended ER stays Andrej made as a boarder, I thought perhaps we had just hit a busy time at a busy hospital. When I worked as an emergency medicine doctor a few decades ago, the ED was mostly empty at the beginning of my 7 a.m. shift. A few patients might be lingering from the day before: alcoholics who would sober up and leave, patients with a severe burn or a bad case of pneumonia who were waiting for a bed in intensive care.

In the decades since, EDs have doubled or even tripled in size. Even so, patients are piling up. When I started asking around, I quickly discovered ED boarding has become commonplace in the past five or so years and is getting worse, more or less omnipresent in hospitals. “Everyone knows about this problem, and no one cares enough to do anything about it,” Adrian Haimovich, an ED doctor at Boston’s Beth Israel Deaconess Medical Center who studies ED boarding, told me. “It’s barbaric.”

Measuring the problem has been challenging because data on ED boarding time is limited. Only this past November did the Centers for Medicare & Medicaid Services finalize a rule that would require hospitals to collect data on ED boarding times. Using what other data he could find, Haimovich has shown that boarding for more than 24 hours has increased dramatically for people 65 and older since the pandemic.

Once they enter ED boarding, patients exist in a gray zone. There has been a national push to establish “safe staffing” in EDs. Even with that, if an ED boarder has a medical complaint that needs quick attention, it’s easy for them to fall through the cracks, Haimovich said: In some hospitals, an admitting team of doctors from upstairs is responsible for the boarders stuck in the ED (but not the associated floor nurses); in others, overstretched ED medical staff must take full responsibility to care for boarders until a bed opens — and that in addition to seeing new patients. Some EDs now routinely hold more boarders — many of them quite ill — than patients being actively evaluated.

Doctors and nurses have complained bitterly about the situation, which forces them to provide inadequate care. Gabe Kelen, the director of emergency medicine at Johns Hopkins University, told me it’s creating a for emergency department staff. But doctors and department heads such as Kelen are not in control of admissions. Generally, a hospital’s administration parcels out inpatient beds, and emergency department boarding is in many ways a result of today’s business models and pressures.

* * *

When I worked as a doctor, if an ED was overwhelmed beyond capacity, the attending (that was me) typically called in to ambulance dispatch to request “diversion” — ambulances should take patients to another hospital. If a hospital got too full, the admitting office canceled elective admissions. Today, hospitals run like airlines and intentionally overbook, Kelen said. They also have fewer beds than they did a few years ago — in part because nurse (and executive) salaries have risen since the pandemic. An empty, staffed bed is a money loser, so the institution has an incentive to keep beds full and make new patients wait.

“The problem isn’t inefficiency — it’s the way health care finance is structured,” Kelen said. “Hospitals typically run on thin margins. Elective admissions are prioritized because they tend to be for lucrative procedures like heart catheterizations and joint replacements.”

Admitting patients through the emergency room has business advantages, too, even if it means they wait for a bed. The evaluation generates charges that typically run many thousands of dollars; once admitted, my husband was still billed the inpatient rate even for a stretcher in the hall. Old, sick, and dying patients are more likely to linger there in part because, after they’re in a real bed, they may take up that spot for days or weeks at a time while waiting for a bed in rehab or hospice, requiring nursing time but not the types of interventions that generate revenue.

Hospitals have tried band-aid fixes, such as bed-tracking software and discharge lounges where patients can wait for paperwork or transport home. Many do hire more doctors and nurses and orderlies in the ER to confront the overflow. But “long ED wait times and boarding have root causes that extend far beyond EDs and hospitals themselves,” Chris DeRienzo, the chief physician executive at the American Hospital Association, told me in an email. He listed the high cost of opening beds and the shortage of rehabilitation facilities, and emphasized the precarious financial situation of many hospitals.

But while Andrej waited in the overflow area, we were not thinking of any larger picture: He was sick, desperate, and still waiting for care. He lingered in boarding for four days before he got a bed. Each time he had to return to the ED, each time he faced a painful wait, he hardened his resolve to never go back.

* * *

Thunk. Crash. “Elisabeth, help!” Those were the sounds that woke me at 2 a.m.

I had fallen asleep on our bed, next to Andrej, his head raised with a foam wedge to ease his breathing and make sure food would not come up. Before I dozed off, I listened to his breathing — 30 times a minute, two times faster than normal — a sign he was struggling to get sufficient oxygen. And that racking cough. This was not good.

Now his bruised body was twisted, lying on the floor with his head against the bed frame. He’d attempted to use his walker to go to the bathroom. He was complaining of chest pain, coughing and short of breath. But he managed to get out those words: “I will not go to the ER.”

I knelt by his side in tears, telling him that I loved him but that I could not do anything more right now at home. Carlos, our super, helped me get him into bed and called EMS. I promised Andrej (against hope) that, given his condition, he would surely be quickly assigned to a real room and bed.

What happened next was a blur. I have a vague memory of paramedics arriving, putting him on the stretcher, sliding him into the ambulance, giving him oxygen. I mechanically grabbed his “do not resuscitate” form from under the refrigerator magnet and buckled myself in beside him.

Then he was in the ED, which was thrumming with activity, under the fluorescent lights, with oxygen in his nose, wearing a hospital gown, and looking gray and sick. The staff asked what was, for them, the operative question about a guy with widespread cancer: “Does he have a DNR?” Andrej asked me what was, for him, the operative question: “Did you bring my shoes?” He already wanted to leave.

An X-ray showed possible pneumonia, more tumors, and a buildup of fluid in his lungs. A medical team that covers oncology patients wrote an admitting note — he was now a boarder, again — and then retreated upstairs. They started antibiotics and gave him something to help him sleep amid the alarms and shouting. He didn’t.

When I came back the next morning — and two mornings after that — I was alarmed to see him still there on a hard stretcher, his feet dangling off the end, exhausted and in pain. “When will he be admitted to a bed?” I implored. If some of the stuff in his lungs was infectious, maybe he could be treated and get home.

Likely soon and I hear your frustration — I came to detest those two phrases.

Neighboring patients came and went 24 hours a day. Some were pleasant; some were screaming in pain or just screaming mad. Pulmonary doctors came and, in this semipublic space, used a large needle to remove three liters of fluid from Andrej’s right lung cavity.

* * *

Near the end of the Biden administration, in response to a bipartisan congressional request, the Department of Health and Human Services convened a meeting on emergency department boarding. Its report, from HHS’ Agency for Healthcare Research and Quality, came out the same month that the Trump administration took office, not long before Andrej’s fall — the last night he spent at home.

“Emergency department (ED) boarding is a public health crisis in the United States,” the report concluded. “Patients who are sick enough to require inpatient care can wait in the ED for hours, days, or even weeks.”

“Boarding contributes to increased mortality, medical errors, prolonged hospital stays, and greater dissatisfaction with care,” the report said.

The meeting proposal called for the formation of an expert panel to recommend solutions. In theory, a panel could have weighed in on key questions: Should hospitals — some of which are rich institutions — get paid an inpatient rate for boarding in the ED? Should they have to report boarding times and face penalties for excess? Should they be required to open more real beds, and should requirements for licensing be lessened? How can the country create more rehabilitation beds?

But since then, the Trump administration has dramatically cut that HHS agency’s staffing, as well as its grant programs. (Congress is still pushing to fund the agency.) The expert panel never formed, let alone offered solutions. The Centers for Medicare & Medicaid Services this year did initiate that will include voluntary reporting of boarding times in 2027, becoming mandatory in 2028. Bad marks will eventually affect Medicare reimbursement.

In an emailed statement, the Joint Commission, which certifies the nation’s hospitals, called boarding a “serious public health crisis” and “one of the most incredibly complex challenges in healthcare.” Although the organization does indirectly look at hospitals’ “ED throughput” from charts, such data is not comprehensive. Little information exists, for instance, about how many people’s last days are spent on stretchers, in hospital limbo.

None of this knowledge would have helped my dying husband. So I did what I’d promised myself I’d never do: I called a doctor friend, who called the hospital’s VIP office.

Suddenly Andrej was whisked to a real hospital room, with a bed that he could adjust to keep his head elevated, a tray he could eat from, a morphine pump, a TV, a bathroom, and a nurse call button at his side. A room with extra chairs, so his stepkids and friends could visit with gifts and mementos one last time. A room where the caring staff placed a chaise longue, where I could sleep over. That way, when he woke scared and coughing and yelling for me, I was there to hold his hand, adjust the oxygen, and push the button for an extra dose of narcotic.

Until, six days after we got in the ambulance and three days after we’d moved to this room, he woke early one morning, agitated and coughing, calling out, “Elisabeth?” I was there. But then, in a blink, he wasn’t.

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Two bills moving through the state Senate seek to prevent immigration enforcement officers from isolating patients from their loved ones and interfering with their ability to get legal help. Analyses for both bills cite reporting by Ñî¹óåú´«Ã½Ò•îl Health News that found family members and attorneys have faced extreme difficulty locating and supporting patients hospitalized while in immigration custody.

Ñî¹óåú´«Ã½Ò•îl Health News found that some hospitals have facilitated patient isolation through what are known as blackout policies, which can include registering people under pseudonyms, withholding their names from the hospital directory, and preventing staff from contacting patients’ relatives to let them know their location and condition.

A bill by Democratic state Sen. Caroline Menjivar of the San Fernando Valley, , would largely prohibit the use of blackout policies for patients in immigration custody and ensure they retain the right to have their families and others notified of their whereabouts and condition. Blackout policies would be allowed when the health care provider determines the patient is a credible risk to themself or others and the risk is documented in the patient’s medical record. Patients would also be allowed to receive visitors.

It seeks to address reports of Immigration and Customs Enforcement agents guarding patients in their hospital rooms while they undergo medical exams or talk with doctors, interfering with medical decisions, and pushing for patients to be discharged prematurely to detention facilities ill-equipped to provide follow-up care.

“These are actions that have no place in health care, and it is a clear violation of the patients’ rights,” Menjivar said.

Under Menjivar’s proposal, agents would not be allowed into the rooms of patients they bring in for care unless they can show legal authorization to be there. If agents remain in the room, staff would be required to ask them to leave during medical exams and patient care discussions. If agents refuse, health care facility staff would need to document it.

, authored by state Sen. Susan Rubio, a Democrat from the San Gabriel Valley, would require health care providers to inform staff and relevant volunteers to respond when patients want their families to know where they are, and to post a notice at facility entrances with information about visitation and access policies. The law already says patients can agree to have loved ones notified they’re in the hospital, and Rubio’s bill seeks to make sure staff and others know they can do that for patients in immigration custody.

The federal Department of Homeland Security, which oversees immigration enforcement, did not respond to a request for comment.

Both bills were passed by the Senate Health and Judiciary committees along party lines and will be heard next by the Senate Appropriations Committee.

More than 20 immigrant rights advocates and health care workers voiced support for strengthened protections for patients at a hearing last week.

“This state must do everything in its power to protect against these abuses and ensure detainees have the right to contact their loved ones when they are hospitalized and in critical conditions,” said Hector Pereyra, political manager with the Inland Coalition for Immigrant Justice.

However, representatives from the California Hospital Association and California Medical Association told lawmakers last week they had concerns that directing health care workers to document agents’ badge numbers and ask them to leave patients’ rooms could create conflict and pose a safety risk.

“While we understand that this is an important issue, we want to ensure the bill strikes the right balance and does not create conflicting or unclear obligations for hospitals and their staff and clinicians, particularly in real-time interactions with federal officers,” said Vanessa Gonzalez, a vice president of state advocacy for the hospital association.

Ñî¹óåú´«Ã½Ò•îl Health News reported that one man, 43-year-old Julio César Peña, was held at a hospital in Victorville for almost two weeks before his attorney and family found out where he was. Peña, who had terminal kidney disease, was shackled to his hospital bed, guarded by immigration agents, and told he wasn’t allowed to disclose his location, according to his wife. He then suffered a seizure that left him intubated and unconscious, but no one notified his family. Peña died Feb. 25, less than two months after he was released to go home.

Advocates for immigrants and health care workers, as well as lawmakers, fear similar incidents are happening around the state.

Menjivar said her bill “seeks to close the gap between existing law and practice by empowering health care provider entities with the tools to uphold the privacy, health, and visitation rights of a patient brought in under immigration custody.”

SB 915 would prohibit hospitals and clinics from allowing immigration officers to make medical decisions for the patient or provide interpretation. Health care facilities would be required to document and verify, “to the extent possible,” the identities of immigration officers; provide patients access to communication tools; and inform patients of their rights. They would also need to complete discharge planning that includes attempts to coordinate with any receiving facility, such as a detention center, to ensure patients receive follow-up care.

The bills come on the heels of legislation passed last year that sought to limit immigration enforcement at health care facilities, including by prohibiting medical establishments from allowing federal agents without a valid search warrant or court order into private areas. However, that bill did not address situations in which patients are already in immigration custody.

“ICE has instilled fear in our hospitals and has kept us from doing our job,” said SatKartar Khalsa, an emergency medicine resident at a safety net hospital in San Francisco who has treated detained patients and testified in support of SB 915. “This has all led to worse care for our patients and has added another layer of fear among health care workers.”

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But physicians, dentists, ambulance companies, and other health care providers are still taking their patients to court, a Connecticut Mirror-Ñî¹óåú´«Ã½Ò•îl Health News investigation of state legal records shows.

Lawsuits by doctors and other nonhospital providers now dominate health care collections in Connecticut, the records show, accounting for more than 80% of cases filed against patients and their families in 2024.

That’s a major reversal from just five years earlier, when hospital system lawsuits made up three-quarters of health-related collection cases in the state’s courts.

The shift is moving medical debt collections into a less regulated realm. Most hospitals, because they are tax-exempt nonprofits, must make financial aid available to low-income patients and follow federal regulations that limit aggressive collection activities. Other medical providers, such as private medical groups, are generally exempt from these rules.

The lawsuits are typically over bills of less than $3,000, but the impact on patients can be devastating. Lawsuits are among the most ruinous byproducts of a health care debt problem that burdens an estimated 100 million people in the U.S.

Lawsuits can lead to garnished wages, liens on homes, and hundreds of dollars of added debt from interest and court fees. They also pile additional financial strains on struggling families, prevent patients from getting needed care, and sap trust in medical providers.

“It’s really messed up,” said Allie Cass-Wilson, a nurse in Bristol, Connecticut, who was sued over a $1,972 debt by an OB-GYN practice where she’d been a patient years earlier. “How can they do that to people?” She did not contest the lawsuit, court records show.

Cass-Wilson, who is 36 and lives in a small apartment just off an expressway on-ramp, said she learned of the outstanding debt only when she was sued. When she tried making an appointment, she said, she was told her doctor wouldn’t see her. “They said I was blacklisted,” Cass-Wilson said. “I was so confused. I couldn’t believe that my medical provider let my care be interrupted like this.”

Cass-Wilson ultimately sought medical care elsewhere.

Radiologists, Dentists, Ambulances

Overall, CT Mirror and Ñî¹óåú´«Ã½Ò•îl Health News identified more than 16,000 health care-related debt cases in Connecticut courts from 2019 to 2024. The database was assembled from online court records with the help of January Advisors, a data science consulting firm that helped extract and sort the data.

Over the six-year period, most of Connecticut’s more than 25,000 did not pursue patients in court for outstanding balances.

But records show that more than 400 medical providers, including several hospital systems, sued their patients. Among those filing lawsuits were radiologists, anesthesiologists, eye doctors, podiatrists, allergists, and pediatricians.

Dentists, periodontists, and other dental providers filed more than 1,000 lawsuits against patients. And ambulance companies sued more than 140 people.

Med-Aid, a company based outside New Haven, Connecticut, that provides orthopedic braces and other medical supplies to patients, sued more than 400 people, the court records show. The company’s president, Frank Dilieto, did not respond to repeated interview requests.

Cass-Wilson was sued by Briar Rose Network in Bristol, Connecticut, a member of a large network of OB-GYN practices across Connecticut called Physicians for Women’s Health. The network’s members sued close to 100 patients in 2024, records show.

Paula Greenberg, CEO of Women’s Health Connecticut, a private equity-backed company affiliated with Physicians for Women’s Health that manages business operations for the network, said the lawsuits represent a small fraction of the more than 300,000 patients the network sees every year.

“This is an organization committed to patients,” Greenberg said. She noted that the group offers options to help patients pay, including installment plans and financial aid.

Geoffrey Manton, president of Naugatuck Valley Radiological Associates, said his practice also will work with people who say they can’t pay. But, he said, patients sometimes stop responding to their bills.

“Hiding from your problems isn’t going to solve them,” Manton said. “If we didn’t take any action, there could be that person that is in that late-model Mercedes that just chooses not to pay any bills.” The group sued more than 125 patients from 2019 to 2024, according to the court records.

Many medical providers say that aggressive collections stem from the growing prevalence of high-deductible health plans that leave patients with thousands of dollars of bills before their coverage kicks in.

Greenberg and Manton said each of their physician groups must collect. “This is a business,” Greenberg said. “We have to look at our operating costs.”

Critics of medical collection lawsuits note that the patients are typically sued over relatively small debts that are likely to have little impact on multimillion-dollar medical practices.

The average patient debt that members of Physicians for Women’s Health sued over in 2024 was less than $1,100, court records show. The physician group’s annual revenues are typically in the tens of millions of dollars, according to Greenberg.

Even relatively small debts — which often include interest — can place substantial burdens on families struggling to keep up with their bills, especially while dealing with a serious illness, patient advocates say.

“We don’t have a realistic choice in using health care,” said Lisa Freeman, who heads the Connecticut Center for Patient Safety and has advocated for patients struggling with medical bills. “To then get sued for it, when people have less and less funds available for anything extra, that’s very disheartening.”

A Stroke, Then a Lawsuit

Matthew Millman, 54, lost his job as an IT support worker after having a stroke. Then Meriden Imaging Center sued him over an $1,891 bill.

Millman and his wife said they tried to explain their financial situation to the center, which is affiliated with Midstate Radiology Associates, a large physician group that operates imaging centers and doctors’ offices across Connecticut.

“It was very frustrating,” said Millman, who lives in an aging apartment owned by his wife’s family in New Britain. Millman, his wife, and their teenage daughter are barely getting by on his two part-time jobs — one bagging groceries, the other helping homebound seniors. Together, the jobs pay about $1,500 a month, he said.

The imaging center, after winning the collection case against Millman, tried to garnish his wages, though that was unsuccessful because Millman had lost his IT job.

“It’s all about money,” Millman said, shaking his head. “If you are trained in helping somebody with their health, it shouldn’t be about the money first. It should be about their health.”

Court records show that Midstate Radiology, Meriden Imaging Center and affiliates filed more than 1,000 collection lawsuits against patients from 2019 to 2024, making them the most litigious nonhospital providers in the state. As is common in medical debt lawsuits, the plaintiffs prevailed in most cases, records show.

Midstate president Gary Dee, a radiologist, didn’t respond to emails and messages left at his West Hartford office.

Across town from Millman’s apartment in New Britain, Joseph Lentz lives in a cramped apartment with his wife and daughter. He used to oversee operations at a Boy Scout camp but is now unemployed. Lentz lost his job during the pandemic. The family home went into foreclosure, he said.

In 2023, Orthopedic Associates of Hartford sued Lentz over a $3,644 bill the practice said he owed after having shoulder surgery in 2018.

“I’d pay it if I could, I guess,” said Lentz, 59. “But I don’t even know where next month’s rent is coming from. I’m trying to climb out as best I can. I guess this is just one more thing to shovel in.”

The orthopedic group filed more than 580 lawsuits against patients from 2019 to 2024, prevailing in most, records show.

The medical group declined interview requests. But chief executive David Mudano said in a statement: “As an independent physician practice, we strive to balance compassion for patients with the financial responsibility required to sustain our practice.”

Old Debts and Disputed Claims

Lentz, who did not contest the lawsuit, said he has no reason to doubt he owes the debt. But in many cases reviewed by CT Mirror and Ñî¹óåú´«Ã½Ò•îl Health News and in interviews, patients being sued questioned the accuracy of their medical bills, citing care they thought health insurance should have covered or, in some cases, bills for services they never received.

This reflects with aggressive collection tactics like lawsuits when disputes over the accuracy of medical bills and delayed or denied insurance claims are so widespread in American health care.

A by the federal Consumer Financial Protection Bureau found that nearly half of the medical debt complaints fielded by the agency involved bills that consumers said were erroneous in some way or that consumers said they’d already paid.

“We know people are billed incorrectly,” said Lester Bird, who studies debt collection lawsuits at the nonprofit Pew Charitable Trusts. Bird noted that courts are ill equipped to sort through disputed medical charges or insurance claims, especially when there is little documentation in most debt collection lawsuits.

“It’s complicated before it gets to the courts,” Bird said, “and it’s very complicated when it gets into the courts.”

This can create headaches for physicians and other providers. But billing problems ultimately affect patients and their families most, said Connecticut state Sen. Saud Anwar, a Democrat who is also a physician. “Patients are left to deal with it.”

Andrew Skolnick, an attorney in Milford, outside New Haven, was sued in 2023 by an imaging center where his wife had received services in 2020.

Skolnick said that when the couple, who were covered through his job-based insurance, originally received the bill from Diagnostic Imaging of Milford, he tried to tell the imaging center it had submitted the claim to the wrong insurance plan, but he said they wouldn’t speak with him.

The center later filed the lawsuit, alleging he owed more than $2,000, plus almost $300 in interest.

Despite interview requests, officials at Diagnostic Imaging of Milford did not comment for this article.

Unlike most patients who are sued, Skolnick had the resources and expertise to contest the suit. He said he offered to pay what would have been his responsibility under the plan if the imaging center had filed his claim correctly. He ultimately settled for $1,700, court records show.

“It wasn’t a tremendous amount, but I knew that they had made a mistake,” Skolnick said. “The system is not working.”

More Protections?

Anwar, the state lawmaker and physician, expressed concern that lawsuits undermine patients’ faith in their doctors.

“It’s a sacred relationship,” he said. “If your physician, who is taking care of you, is suing you for money, that’s a problem.

Many hospitals, facing bad publicity from suing patients, have stopped taking patients to court over unpaid bills. Hospital collection lawsuits identified by CT Mirror and Ñî¹óåú´«Ã½Ò•îl Health News in Connecticut court records plunged from more than 4,900 in 2019 to fewer than 300 in 2024.

Also, in recent years, several states, including Connecticut, have expanded protections for patients with bills they can’t pay.

Connecticut now from consumer credit reports, and legislators are pushing to get hospitals to provide more financial aid to patients. Other states have restricted the use of wage garnishment and property liens to collect medical debt.

But state efforts to rein in aggressive medical debt collections have mostly focused on hospitals. That may need to change, said Connecticut state Sen. Matt Lesser, a Democrat who co-chairs the legislature’s Human Services Committee.

He is a key backer of a bill that would bar hospitals from billing patients who receive public benefits like food assistance or who make less than twice the federal poverty level, about $32,000 for an individual.

The restriction would not apply to bills from physicians and other nonhospital providers, however. “We may have to go bigger if that’s where the heart of the matter is,” Lesser said.

Connecticut Gov. Ned Lamont, a Democrat who spearheaded an initiative to for more than 150,000 state residents, also expressed concern about physicians suing the people in their care.

“Everyone should do the right thing by patients,” he said.

This article was produced in partnership with , a statewide nonprofit newsroom that covers public policy and politics.

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HAY SPRINGS, Neb.— The sun was just warming the horizon as Mark Pieper left his house near his cattle ranch on a crisp February morning.

It’s not unusual for the rancher to wake up early to tend to livestock, but at 5:45 a.m. this day his cattle wouldn’t come first. For the past 3½ years, three days a week, Pieper has made an early-morning commute to get dialysis at the nearest hospital.

Pieper lives outside Hay Springs, which has 599 residents, according to a sign at the edge of town. He makes sure not to forget his chocolate-brown cowboy hat before starting up his pickup truck for the half-hour drive to Chadron.

That February morning was one of his last dialysis sessions there before the hospital shuttered the service at the end of March.

“I guess I’ll just bloat up and die in a month,” Pieper remembered thinking when he learned the center was closing, eliminating the only option near his home.

He needs dialysis to survive after cancer treatment damaged his kidneys.

Pieper and 16 other patients relied on Chadron Hospital for the life-sustaining therapy that filters waste and fluid from their blood — a job their failing kidneys could no longer do. Treatment lasts about four hours.

The closure is just one example of the long decline of health care services in rural America, where people have higher rates of many chronic conditions but less access to care than elsewhere.

The Trump administration promised to address this problem, when it launched the $50 billion federal Rural Health Transformation Program in September. It may not be enough to stop the trend.

“[President Donald] Trump says he is going to help the rural health care,” Pieper said. Dialysis “is one thing that we really need here.”

Some patients have moved to live closer to care, including several nursing home residents. Their new facilities may be farther from their families.

Others are making long drives to dialysis centers. Pieper eventually found treatment in Scottsbluff, which, with about 14,000 residents, is the biggest city in the rural Panhandle region of western Nebraska. The hour-and-a-half drive will triple his time on the road to more than nine hours each week.

Jim Wright and his wife reduced their drive time — but are spending more money — by renting a small home near Rapid City, South Dakota, and living there on weekdays so he can get dialysis. Wright said he understands that rural hospitals face financial challenges.

“But we’re talking about something that’s lifesaving. It’s not a matter of, ‘Oh, I would like to be there’” getting treatment, he said. “It’s a case that if you don’t, you die.”

An Influx of Money That’s Out of Reach

Jon Reiners, CEO of the independent, nonprofit Chadron Hospital, wrestled with the decision to end dialysis services. He and several patients said that the closure was announced as the $219 million the state will receive in first-year funding from the .

But the five-year program is aimed at exploring new, creative ways to improve rural health, not to help existing services stay afloat. States can use only up to 15% of their funding to pay providers for patient care.

At least 11 states — Nebraska is not among them — have mentioned using funding for rural dialysis programs, according to a Ñî¹óåú´«Ã½Ò•îl Health News review of applications. Their ideas include starting a mobile dialysis unit and helping people get treatment at home or in long-term care facilities.

Reiners said Chadron Hospital lost $1 million a year on its dialysis service due to low reimbursement rates that didn’t cover operational costs.

The facility is a critical access hospital, a designation that allows certain small, mostly rural hospitals to get increased reimbursement rates for their Medicare patients. While most of the affected patients were on Medicare, the critical access program doesn’t cover outpatient dialysis, Reiners said.

Reiners said the hospital worked for more than a year to find solutions, such as reaching out to four private companies to potentially take over the center. But he said they all passed after realizing they would lose money.

Nephrologist Mark Unruh said the dialysis closure in Chadron reflects a wider trend of staffing and funding challenges.

“You do end up in situations where you have people who are displaced like this, and it’s just sad,” said Unruh, chair of the Internal Medicine Department at the University of New Mexico.

People in rural America face significant disparities in kidney health and treatment, published in 2024 in the American Journal of Nephrology. They’re and face after diagnosis, according to data from the National Institutes of Health.

The best way to address this is to focus on prevention, Unruh said. He pointed to a that helps primary care doctors in rural and other underserved areas prevent end-stage renal failure.

Another idea, Unruh said, is boosting the rate of kidney transplantation for rural patients. He’s looking at whether it’s helpful to “fast-track” tests patients need to get approved for a transplant by scheduling all of them over a couple of days to limit travel time.

Unruh said the U.S. health system also needs to recruit more staff who can train patients and their caregivers to administer dialysis at home.

Exploring the Option of Home Dialysis

Rural dialysis patients are more likely than urban ones to get home dialysis, according to . In 2023, the rate was nearly 18% for rural patients and about 14% for urban ones.

One type of home dialysis requires surgery to get a catheter placed in the abdomen and . The other kind requires . The nearest facility to Chadron that offers training for the first option is in Scottsbluff. The nearest that offers training for the latter kind is three hours away in Cheyenne, Wyoming.

Pieper said doctors told him he’s not a candidate for home dialysis or a transplant. The Panhandle has a nonprofit, rural transit system, but its schedule won’t work for Pieper. He said that leaves him with no choice but to get treatment in Scottsbluff, a 200-mile round trip.

It takes Linda Simonson even longer — more than four hours round trip — to drive her husband, Alan, from their ranch to his treatment in Scottsbluff.

Linda sat in the waiting room with a yellow legal pad during one of Alan’s final treatments in Chadron. The paper was scrawled with phone numbers of politicians to call and driving distances to dialysis centers in the region. She said facilities closer to their ranch either don’t have room for new patients or lack good spots along the route to take a driving break in bad weather.

“It’s just unreal,” she said.

She said even if Alan took a bus, she’d have to ride along to support him during the trip and his treatment.

Jim and Carol Wright, the couple staying near Rapid City on weekdays, said they can’t afford to rent a second home forever. Their weekly commute is already taking a physical and emotional toll. They said they’ll eventually have to move to a bigger city, giving up the house they love in the scenic Nebraska National Forest.

Carol said she feels for the dialysis staffers in Chadron, who are wonderful.

“It just doesn’t seem right to sacrifice one unit that’s so vital,” she said while standing next to a pile of moving boxes stacked inside their rental.

The Wrights wrote letters to politicians and hospital leaders to share their concerns and ideas for keeping the unit open, including using the federal rural health funding.

Simonson said she spoke with aides for the governor and her state representatives but none of the leaders called her back.

“It feels like they don’t know that we exist at this end of the state,” she said.

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Other drivers stopped, broke the car window, and pulled him to safety. A passing volunteer firefighter performed CPR until an ambulance arrived to take Masterson to UPMC Mercy hospital.

He spent 18 days in the medical intensive care unit there, 14 of them on a ventilator. He developed delirium, a common ICU condition, and needed antipsychotic drugs. Despite a feeding tube, he lost weight. “We honestly weren’t confident that he would pull through,” said Ron Dedes, his brother-in-law.

But he did. Masterson was discharged Feb. 1 and returned home with near-constant family support. Working diligently with several kinds of therapists, he has regained his ability to walk, despite lingering weakness, and to manage his personal care. His once-garbled speech has markedly improved. He can make himself a sandwich.

Now, “our biggest concern is his memory,” Dedes said. Masterson, who so recently handled complex legal matters, forgets conversations and events that happened a few hours earlier, said Patti Dedes, his sister. He can’t yet operate a microwave or place a phone call.

In an interview, he described himself, accurately, as “much, much better than I was” — but misstated his age. Screening tests after his discharge indicated cognitive impairment and depression.

Among critical-care doctors, prolonged symptoms like his are known as “post-intensive care syndrome,” or PICS. The fallout can be physical or psychological, as well as cognitive, and can persist for months or years.

More than are admitted to intensive care across about 5,000 American hospitals, and research shows that . Older age increases the odds.

Patients and families are often startled by these continuing difficulties. “The belief is that they’ll be discharged from the hospital and in two or three weeks, they’ll be back to normal,” said Brad Butcher, who was Masterson’s doctor and in the medical journal JAMA. “That doesn’t comport with reality.”

In fact, with greater ICU use and improved treatments — the Society of Critical Care Medicine estimates that their stays — the population likely to encounter the syndrome is growing.

“Everyone is grateful that the patient has survived,” said Lauren Ferrante, a pulmonary critical-care doctor and researcher at the Yale School of Medicine. “But that’s just the start of a long road to recovery.” In a study of patients 70 and older that she co-authored, within six months after discharge only about half had .

Intensive care patients face a . PICS symptoms — weakness, pain, neuropathy (tingling in arms and legs), and malnutrition — to , primarily anxiety and depression. like Masterson’s are commonplace, including problems with memory, attention and concentration, and language.

“For many people, surviving a critical illness is a life-altering experience,” Butcher said. Patients in intensive care after emergency or elective surgery also of new physical, mental, and cognitive problems a year later.

The same aggressive treatments that save lives contribute to the syndrome. Intensive care patients “have some sort of dramatic organ failure that requires immediate attention” and constant monitoring, explained Carla Sevin, a pulmonary critical-care doctor who directs the ICU Recovery Center at Vanderbilt University Medical Center.

That could mean a breathing tube attached to a ventilator, which in turn often requires sedating drugs. Sedation “can precipitate delirium, and delirium is the key factor in cognitive symptoms,” Butcher said.

It doesn’t help that constant beeps and alarms from monitors and round-the-clock bright lighting disrupt sleep, and that restrictive family visiting hours deprive patients of reassuring faces and voices.

Gregory Matthews, a retired accountant in St. Petersburg, Florida, spent nearly a month in an ICU after a lung transplant in 2014. He still vividly remembers his hallucinations, including mice running across the wall and someone trying to frame him for drug running.

“One day, I thought a doctor was an assassin — I could see the rifle,” said Matthews, now 80. “So I jumped out of bed,” he said, and yanked out his IVs. The staff put his arms in restraints for days.

But immobilization exacts its own toll as patients quickly lose muscle mass and strength. “Our bodies were not meant to lie in bed all day,” Ferrante said.

Psychologically, “PTSD is pretty common, similar to what’s seen in combat veterans or sexual assault survivors,” Sevin said, referring to post-traumatic stress disorder. Families can suffer anxiety and depression along with the patients.

Alarmed by such discoveries, doctors and administrators at about 35 U.S. hospitals have established , where teams of doctors, nurses, pharmacists, therapists (physical, occupational, cognitive, speech), and social workers screen for a host of conditions and help guide patients through them.

Vanderbilt’s clinic saw its first patient in 2012. The Critical Illness Recovery Center at the University of Pittsburgh Medical Center, which Butcher founded in 2018, works with about 100 patients a year, including Masterson. Yale opened its clinic in 2022.

They rely on six practices recommended by the Society of Critical Care Medicine that are shown to . The measures call for changes such as using lighter sedation, getting patients up and moving earlier, testing their breathing daily to wean them from ventilators sooner, and removing restrictions on family visiting.

Clinics often offer support groups for patients and families. There’s evidence that keeping an ICU diary, in which patients and caregivers record their experiences, and engaging in exercise and physical rehabilitation after discharge.

Also on the clinics’ agenda: discussions of what other options patients might prefer if they face another critical illness, as many do. Would they agree to undergo intensive care and risk its aftereffects again? Or choose palliative care, which emphasizes comfort rather than cure? Some post-ICU patients remain permanently impaired.

Butcher, although he said that the use of the new practices needed to expand dramatically, sounded optimistic about the future of critical care. “We’re going to find better diagnostic tools, better preventive strategies, and better therapies,” he said.

For now, though, the ICU experience remains disorienting and sometimes traumatic. When Butcher asked 117 patients in his post-ICU clinic those next-time questions, many wanted to place limits on further medical interventions.

About a third would want to lower the level of aggressive care. Of those, about a quarter would want “do not resuscitate” and “do not intubate” orders, and almost 7% said they never wanted to return to an ICU.

Masterson is working hard to further his recovery. “I haven’t been out and about much,” he said. “I’ve been kind of homebound.” He hopes to get strong enough to resume running — he used to log 3 to 4 miles several times a week.

The future for patients contending with post-ICU syndrome often depends on their physical, mental, and cognitive health before their admission. Masterson’s previous fitness and cognitively demanding work bode well for his further progress, Butcher said.

His family remains alternatively hopeful and worried. “Down the road, what’s it going to be like?” Dedes, his brother-in-law, wondered. “We just take it day by day.”

The New Old Age is produced through a partnership with .

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It’s one of the many parts of the 25-bed rural hospital that need updating, former CEO Ron Wiens said.

He said the hospital, an essential service in its namesake town of nearly 800 residents in the state’s sprawling north-central high plains, needs at least $1 million for deferred maintenance, including a failing HVAC system. But the facility has struggled to make payroll each month and can’t afford to make all the fixes, Wiens said.

Built by farmers and ranchers in 1965, Big Sandy Medical Center began with nine beds. Today, a similar community effort — donations and grants to plug financial holes each year — keeps it afloat.

Wiens, who recently left his position at the hospital, said he wishes Big Sandy could get funding from Montana’s share of the $50 billion federal Rural Health Transformation Program to renovate the hospital and direct payments to help secure its future. The state received more than $233 million in its first-year award.

But the hospital may not get the kind of help he sought.

That’s because the five-year program focuses on new, creative ways to improve access to rural health care, not on directly funding services and renovations. And Montana is one of at least 10 states whose leaders say projects launched under the federal program could lead rural hospitals to cut services so they can continue to afford to offer emergency and other essential care.

Congressional Republicans created the fund as a last-minute sweetener to their One Big Beautiful Bill Act, signed into law last summer. The funding was intended to offset disproportionate fallout anticipated in rural communities from the law, which is expected to slash Medicaid spending .

includes programs to make it easier for rural residents to get medical care and live a healthy lifestyle. For example, it says funding can be used to start community gardens, train paramedics to make home visits, open school-based clinics, or bring mobile clinics to rural areas.

rural Montana hospitals can receive payments for implementing recommendations, “including right-sizing select inpatient services” to match demand. In some cases, it says, right-sizing might mean “downsizing.” The state says hospitals will have input and recommendations will be specific to each facility.

“That’s what has all the hospitals on pins and needles, words like restructuring, reducing inpatient beds. Everybody is going, ‘What is this going to look like?’” Wiens said.

The Montana Department of Public Health and Human Services declined to answer questions about how it will carry out its right-sizing efforts.

A Lifeline of Care

Big Sandy cattle rancher Shane Chauvet doesn’t want any services cut.

He credits Big Sandy Medical Center with saving his life after a flying piece of metal nearly cut off his arm during a windstorm a few years back.

“I looked over, saw it coming, and whack!” Chauvet recalled.

His wife drove him to the hospital, where they frantically pounded on the ER door while Chauvet’s blood pooled on the ground.

Because of the storm, staffers worked on Chauvet with no power and no ability to summon a helicopter. He was then taken by ambulance 80 miles through intense rain and hail to a larger hospital.

Chauvet understands the state’s plan doesn’t call for eliminating emergency care, but he worries that reducing other services would set off a downward spiral for the hospital and his town.

In Oklahoma, realigning clinical services could mean “shutting down service lines,” to the federal program. And in Wyoming, any facility that receives funding must agree to “reduce unprofitable, duplicative or nonessential service lines,” .

Monique McBride, business operations administrator at the Wyoming Department of Health, said the department interprets right-sizing as helping rural hospitals provide essential services — such as emergency departments, ambulance services, and labor and delivery units — while maintaining long-term, financial stability.

“This might involve limiting some elective procedures that could be done at lower cost in higher-volume facilities. The main distinction here is time-sensitive emergencies vs. ‘shoppable’ services,” she said.

A New Lease on Life?

Seven of the 10 states — Nebraska, North Dakota, Tennessee, Kansas, Nevada, South Carolina, and Washington — where rural hospital service cuts are on the table say they’ll help pay for hospitals to convert to Rural Emergency Hospitals. The recently created federal designation requires hospitals to halt inpatient services and offers enhanced payments to help them maintain emergency and outpatient care.

At least 15 additional states wrote that they’ll use the federal funding to right-size, evaluate, or adjust services — which could mean adding or taking away services, or transitioning them to a telehealth or outpatient setting.

Brock Slabach, chief operations officer of the National Rural Health Association, said, “There’s a proper concern from rural hospital administrators that this funding is not going to where it was intended.”

He said cutting services that lose money could backfire in the long run. For example, he said, halting labor and delivery care might drive more people out of small towns, further reducing hospitals’ patient numbers and revenue.

The type of hospital services that states will assess matters, said Tony Shih, a senior adviser at the Commonwealth Fund, a nonprofit focused on making health care more equitable.

“If the end result is that high-margin services are taken away from local hospitals with nothing given back in return, it can be financially harmful,” he said.

Shih noted that states’ plans to add more outpatient care could prove beneficial for patients. It’ll take time to know which states help stabilize rural hospitals, he said.

Rural hospital leaders say they know which changes would keep their facilities open and that states shouldn’t suggest or mandate service cuts and other changes on their behalf.

Josh Hannes, who oversees rural health policy at the Colorado Hospital Association, said “top-down” directives won’t work.

He said the association’s members believe they can find efficiencies and are eager to collaborate. But “a state agency shouldn’t be making those determinations,” he said.

Hannes said members are worried Colorado’s plan to classify rural health facilities as a “hub, spoke, or telehealth node” will compel service reductions. The classification will help determine “which services are sustainable locally and which are best provided regionally or through telehealth,” .

Spokespeople for the Colorado and Oklahoma health departments said no facility will be forced to end services. But Oklahoma spokesperson Rachel Klein said some facilities might choose to do so as part of a broader effort to make sure they’re meeting community needs while remaining financially stable.

“A hospital might shift certain services to a nearby regional provider with higher patient volume and specialized staff while expanding other local services,” such as primary, outpatient, or community-based care, she said.

Wiens and Darrell Messersmith, CEO of Dahl Memorial Hospital in the southeastern Montana town of Ekalaka, said they worry the only way hospitals will get their share of funding is to cut services or become Rural Emergency Hospitals that don’t offer inpatient services.

“I would hate to see things shift toward a pack-and-ship facility,” Messersmith said. “Right now, we function quite well as an inpatient facility.”

Not all Montana health leaders are worried.

Ed Buttrey, president and CEO of the Montana Hospital Association, said he thinks his state’s plan could help rural hospitals become financially sustainable and survive Medicaid cuts. Buttrey is also a Republican state lawmaker.

Chauvet, the Big Sandy rancher, said his perspective on whether remote towns like his should have a hospital is forever changed because of his accident.

“I always would say, ‘Oh, they’re nice to have,’ but now I look at the hospital and say, ‘That’s essential to our community,’” he said.

This <a target="_blank" href="/rural-health/rural-emergency-hospitals-montana-rightsize-downsize-services-transformation-fund/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

Ñî¹óåú´«Ã½Ò•îl Health News senior correspondent Renuka Rayasam discussed the Ñî¹óåú´«Ã½Ò•îl Health News series “Priced Out,” which focuses on the health insurance crisis, on An Arm and a Leg on March 19.

• (starts at 21:03).
• Read Rayasam’s “When Health Insurance Costs More Than the Mortgage.”

Ñî¹óåú´«Ã½Ò•îl Health News rural health reporter Andrew Jones discussed the spread of measles across the Carolinas on WUNC’s Due South on March 17.

• Read Jones’ “Hospitals Fighting Measles Confront a Challenge: Few Doctors Have Seen It Before.”

Céline Gounder, Ñî¹óåú´«Ã½Ò•îl Health News’ editor-at-large for public health, discussed on CBS News 24/7’s The Daily Report on March 16 how U.S. hospitals and insurers are turning to AI to settle disputes over medical claims and payments. On March 17, she outlined the court ruling blocking the Trump administration’s vaccine policy changes for children on CBS News’ CBS Mornings. Gounder also discussed Susie Wiles’ decision to stay on as White House chief of staff amid breast cancer treatment on CBS News 24/7’s The Takeout on March 16.

This <a target="_blank" href="/on-air/on-air-march-21-2026-insurance-prices-measles-spread-ai-vaccine-ruling-susie-wiles/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

Raven’s case reveals a little-known gap in the U.S. donation system: There is no clear, nationally binding way to opt out — or to ensure a later “no” overrides an earlier “yes” in a different state.

This gap, along with a range of other issues related to the organ procurement system, has become a point of bipartisan congressional concern. Late last year, the House Ways and Means subcommittee on oversight examining what members described as shortcomings, including alleged consent failures.

The panel’s scrutiny of organ procurement organizations, or OPOs, and their consent practices is a first step toward a more meaningful accountability plan that could help maintain trust across the system, according to some committee staff members.

The trust in our organ procurement and transplant system “has been eroded,” said Rep. Terri Sewell of Alabama, the panel’s senior Democrat, calling for stronger transparency and oversight to rebuild public confidence.

“Respect for autonomy — our ability to make our own decisions (self-determination) — allows for both ‘yes’ and ‘no’ decisions and for changing one’s mind,” Margaret McLean, a bioethicist at Santa Clara University, said in an email.

“Medical decision-making is not well served in a context of ambiguity,” she said.

And if a donor revokes consent, she added, “revocation by that person should carry the same ethical and procedural weight as the initial authorization, perhaps more.”

Raven Kinser Changed Her Mind

Raven was 25 when she died. Her parents, Jeff and Jaime Kinser, were at home in Michigan when they received the phone call that shattered their world. They drove through the night to the Newport News hospital, where they learned Raven’s disposition had been referred to LifeNet Health, the region’s federally designated OPO. LifeNet a failing OPO by the Centers for Medicare & Medicaid Services, meaning it doesn’t meet the government’s standards for how well it finds donors and recovers usable organs for transplant compared with other organizations.

Under federal law, hospitals are required to refer deaths and imminent deaths to OPOs, which take responsibility for donation-related decisions and discussions.

OPOs occupy a hybrid position in the health care system, as private nonprofit entities that hold exclusive, federally authorized contracts to recover organs within defined regions. They are regulated by CMS and overseen by the Health Resources and Services Administration, but that oversight occurs primarily through certification standards, performance metrics, and periodic audits rather than routine public disclosure requirements. With donor registries largely managed at the state level and no unified federal reporting requirement for removals, comprehensive national data on revocations is elusive.

OPOs are meant to separate bedside care from organ procurement decisions — to help prevent conflicts of interest and preserve the trust that decisions about life-sustaining treatment are made solely in the dying patient’s interest. But the , leaving families unsure who is in control if and when conflicts arise.

The Kinsers, for instance, felt their daughter would not have wanted to go through the donation process, but, at the time, had no evidence. Jaime remembers telling her husband that Raven would have been mad at them for letting it happen. In an effort to stop it, Jaime inquired about whether she would be asked to sign a consent form. But a LifeNet staff member told her that wasn’t an option because donation was Raven’s “living will,” Jaime said. Meanwhile, Raven’s parents said, her personal effects, including her Virginia driver’s license, which bore no donor designation, had not yet been turned over to the family, leaving them no meaningful way to challenge LifeNet’s determination in real time.

Jaime struggled with this outcome, even mentioning in Raven’s obituary that she was an organ donor. “How would you try to make peace with something that you felt was so wrong but had no proof?” Jaime said.

Two months passed before the Kinsers gained possession of the license, which, as they had expected, showed that Raven had not opted to be an organ donor.

According to the Kinsers, LifeNet staff told them that Raven’s status as a registered donor was established by her designation on her older Michigan license.

An emailed statement attributed to Douglas Wilson, LifeNet executive vice president, said the OPO follows federal law on organ donation, the , and queries applicable state donor registries, relying on time stamps and governing law to determine the , legally valid expression of intent. Under that framework, a prior donor authorization remains enforceable unless a valid revocation is recorded in the regional OPO’s donor registry.

Because of privacy laws, Wilson said, LifeNet could not comment on the specifics of any individual case.

Raven Kinser’s choice not to be a donor when she applied for a Virginia license in July 2024 was not reflected in the registry LifeNet consulted, according to her parents, who said that is what the organization told them. According to Lara Malbon, executive director of Donate Life Virginia, which manages the state’s organ donor registry, if someone changes their donor status while completing a Virginia driver’s license or ID transaction, “that information is sent to our registry, and the registry is updated daily to reflect those changes.” Malbon also said Virginia’s registry includes only people who have “affirmatively said ‘yes’ to becoming an organ, eye, and tissue donor, and it retains records solely for those who have made that decision.”

The Kinsers said they were never told why Raven’s Virginia DMV record was insufficient, or how an older yes from Michigan could outweigh a newer no in Virginia.

In December, the Kinsers filed a complaint with the Health Resources and Services Administration, urging federal regulators to investigate LifeNet’s actions and require OPOs to provide families with documented proof of the donor’s current status at the time of referral. They also called for OPOs, which operate as federally designated regional monopolies but are structured as private nonprofits, to be made subject to public records laws.

When Opting Out Doesn’t Stick

Such confusion is not unique to the Kinser family. It is a consequence of the organ donation consent process in the United States.

“I have also wondered that: why there’s not just one” registry for organ donation, Jaime said. If you go to get a firearm, you have one federal registry, she said.

Here’s how the system works: Americans typically register their organ donation intentions when they apply for driver’s licenses through state DMVs, and that decision remains governed largely by state law. That has led to 50 different sets of rules and very little federal regulation of what has become an in the U.S.

In some states, a donor checkbox is a binding legal document. In other states, the same choice may have different rules about when it takes effect, what it covers, and how it can be revoked.

Those differences can be big. State rules determine whether a person’s “gift” is limited to transplantation or also includes research and education. They determine whether the donation authorization includes tissue. And they can determine what counts as a valid revocation and when it is legally recognized.

Because of the system’s fragmentation, though, signals can cross when someone changes their mind, like Raven; it’s not always reflected from one state system to another.

Under state versions of the Uniform Anatomical Gift Act, a donor’s most recent legally valid expression of intent is meant to control.

“Personal autonomy is paramount to everything,” said Adam Schiavi, a neurointensivist who studies end-of-life decision-making. “If I say I want to be a donor, or if I say I don’t want to be a donor, that has to take precedence over everything else.”

But states differ in how revocation must be recorded and which registry is considered authoritative if someone has lived in more than one state. Those inconsistencies can create uncertainty when records conflict across jurisdictions.

“It has to be the most recent expression, not the most recent yes,” Schiavi said.

In Michigan, a change to someone’s donor status is reflected immediately in the secretary of state’s system, but only affirmative “yes” registrations appear in the registry. Removal information remains in internal motor vehicle records. In Virginia, the state registry includes only those who have affirmatively said “yes,” retaining records solely of donors, creating potential gaps if someone believes a DMV change alone is sufficient.

Elsewhere, processes and volumes differ sharply. New Mexico updates driver records in real time but does not transmit status changes to its donor registry. Instead, donor services receive restricted search access. The state logged nearly 15,000 removals in late 2021 and almost 30,000 in 2022. Florida, which maintains formal removal records through weekly DMV data files, reported 356,161 removals in 2020, more than 1.5 million in 2023, and over 1.2 million in 2025. Kentucky processed 847,371 donor registrations from 2020 to 2025, but only 16,043 icon removals, with registry withdrawal handled separately. In 2025, more than 570,000 Texans opted into the registry, while over 31,000 individuals requested removal.

According to a federal official who asked not to be identified for fear of professional repercussions, OPOs have been highly effective at lobbying states to broaden the definition of consent and authorization — shaping how those terms are applied, whether those statuses must be renewed, and how easy or difficult it is for someone to opt out.

In subsequent correspondence with federal officials, the Kinsers have urged reforms to prevent OPOs from relying on older registry entries when a more recent state DMV record exists, and they have called for criminal penalties in cases in which consent is knowingly misrepresented. Federal regulators have not indicated whether such proposals are under consideration.

Congress Takes a Closer Look

Ethicists have long cautioned that consent must be more than a checkbox and must remain grounded in respect for the donor-patient. In an October on organ transplantation, the American College of Physicians emphasized that clinicians’ primary duty is to the patient in their care, and that maintaining trust requires transparency and safeguards to prevent conflicts of interest from blurring that “bright line.”

Advocates say those steps leave unresolved the core problem raised by the Kinser family: the lack of a clear, legally binding way for people to say “no” and for that decision to follow them across state lines.

The said it “supports strengthening donor registries and enhancing registry interoperability to ensure that an individual’s documented donation decision is honored.” But OPOs have also argued that current policies protect donation as a legally enforceable gift and prevent families from overriding a loved one’s “yes” in the midst of grief. They argue that stronger, more durable consent helps reduce missed donations and saves lives.

Congress and federal regulators are considering changes to the nation’s organ donation system, including how consent is recorded and what should happen when a donor changes their mind.

Sen. Ron Wyden (D-Ore.) last year to create new federal standards for patient safety, transparency, and oversight of organ transplants, including a formal authorization for hospital or OPO staff to pause harvesting if there is any “clinical sign of life.”

HHS press secretary Emily Hilliard said the agency is “committed to holding organ procurement organizations accountable” and to “restoring integrity and transparency” to organ donation policy, calling reforms essential to informed consent and protecting donor rights. CMS issued related March 11, but it does not address the problems highlighted by the Kinsers’ case.

Critics of the organ transplant system say it is difficult for families to obtain documentation or independently verify how consent determinations were made in disputed cases.

HRSA has launched a sweeping modernization of the Organ Procurement and Transplantation Network, the national system that oversees organ allocation and transplant policy. Federal officials have described the overhaul as the most significant restructuring of the transplant system in decades, aimed at breaking up a long-standing contractor monopoly, strengthening patient safety oversight, and replacing aging technology infrastructure.

Central to that effort is modernizing the OPTN’s data systems: improving interoperability, audit trails, and transparency in how decisions are documented and reviewed. A more modern federal data architecture could make it easier to trace which registry was queried, what time stamp controlled, and how a consent determination was reached in disputed donations that span multiple states. But the modernization effort would not change the underlying state-by-state legal framework for donor authorization and what counts as a valid “no.”

Meanwhile, Donate Life America, a national nonprofit that supports state donor registries, also runs the , a central database that allows people to sign up as organ donors directly. Unlike many DMV systems, the national registry lets people log in at any time to view, update, or remove their registration and print proof of their decision. The group is also starting a project to let participating states send registrations directly into the national system, creating one place to track donor sign-ups and removals across state lines.

Each of the proposals comes with trade-offs, and both advocates and OPOs have raised concerns about how they would work in practice.

“Just doing a dump truck dump of information is not going to do much unless you really apply it through checking and auditing,” said Arthur Caplan, a professor of bioethics at New York University’s Grossman School of Medicine. “It could be like the IRS. They don’t have to audit everybody. Just do a spot audit once in a while.”

The Kinsers aren’t opposed to organ donation itself. They celebrated Raven’s donation in her obituary, and in their complaint to federal regulators, they wrote, “We are NOT anti-organ donation, and we will never take away the gift of life our oldest daughter gave to others. However, that was not LifeNet’s choice to make.”

This <a target="_blank" href="/health-industry/organ-donor-state-registries-consent-authorization-optn-opo-raven-kinser-virginia/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">