The Trump administration redesigned the online Medicare Cost Finder for seniors to compare complex health insurance options. But consumer advocates have identified instances when the tool has malfunctioned and given inaccurate plan and price data.

This article was first published on Monday, November 25, 2019 in ProPublica.

By Akilah Johnson

ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up to receive our biggest stories as soon as they're published.

The federal government recently redesigned a digital tool that helps seniors navigate complicated Medicare choices, but consumer advocates say it's malfunctioning with alarming frequency, offering inaccurate cost estimates and creating chaos in some states during the open enrollment period.

Diane Omdahl, a Medicare consultant in Wisconsin, said she used the tool Friday to research three prescription drug plans for a client. The comparison page, which summarizes total costs, showed all but one of her client's medications would be covered. When Omdahl clicked on "plan details" to find out which medicine was left out, the plan finder then said all of them were covered.

So she started checking the plans' websites, and it turns out there are two versions of the same high blood pressure medication. One is covered. The other is not. The difference in price: $2,700 a month.

In Nebraska, miscalculations offered through the new Medicare Plan Finder were so worrisome that the state in late October temporarily shut down a network of about 350 volunteer Medicare advisers for a day because without the tool, narrowing the numerous choices — more than 4,000 Medicare plans are available nationwide — down to three top selections would be nearly impossible.

Days later, EnvisionRxPlus, a prescription drug plan, sent an email to independent insurance brokers nationwide recommending they not use the Medicare Plan Finder because of incorrect estimates on drug prices and patient deductibles. (It's a warning they had yet to retract some two weeks later.)

Minnesota's Association of Area Agencies on Aging said in a news release on Nov. 14 that the Medicare Plan Finder "continues to produce flawed results," including inaccurate premium estimates, incorrect prescription drug costs and inaccurate costs with extra help subsidies.

More than 60 million people use Medicare, which covers those over 65 and the disabled. Users have to pick their plans annually. The current open enrollment period ends Dec. 7. Medicare advisers — as well as advocates for seniors — worry that the full weight of the tool's inaccuracies will not be felt until the 2020 coverage year begins and seniors head to pharmacies to fill prescriptions or show up for medical appointments. For many Medicare participants, selections made during open enrollment are irreversible.

"Millions of people are going to be absolutely affected," said Ann Kayrish, senior program manager for Medicare at the National Council on Aging. "And you hate to think about millions of people having the wrong plan. That's kind of crazy."

"It's not like there's one consistent problem that you can fix and then be addressed," said David Lipschutz, associate director of the Center for Medicare Advocacy. "It's really like a game of whack-a-mole."

The Centers for Medicare and Medicaid Services, the government agency that administers federal health programs, acknowledged in a statement that some problems have been reported but said development of the redesigned tool, which cost about $11 million, was an "iterative" process. The statement said CMS did "extensive consumer testing … to ensure that the information that is displayed is complete, streamlined, understandable, and is in plain language."

CMS said it previewed the new plan finder in June and began "road-testing" it in July, saying "stakeholder feedback led to enhancements" that were implemented before a public launch on Aug. 27. Updates have continued as users report issues, according to the statement.

CMS said this is the first time since the Medicare Plan Finder was developed in 2005 that the tool has been redesigned. The complete rebuild was necessary, it said, because legacy technology and "proprietary software" couldn't keep pace with "the needs of today's digital audience" and because the explosion in options available to seniors under various plans.

Millions of Medicare beneficiaries use the plan finder to reevaluate their insurance choices during open enrollment. The tool drives traffic to Medicare.gov, where users may filter, sort and compare choices. A recent Kaiser Family Foundation analysis found that beneficiaries will have an average of 28 Medicare Advantage plans and 28 prescription drug plans to choose from in 2020. As of Friday, there was no alert on the federal website warning of possible inaccuracies because of the redesign.

Choosing from myriad options can be so befuddling to the typical Medicare participant that states offer help through the federally supported Senior Health Insurance Program, which offers free one-on-one counseling to those eligible for Medicare, their families and caregivers. In Nebraska, for example, seniors choose from 30 Medicare Advantage and 29 Part D prescription drug plans, and the plan finder tool offers a way to quickly sort through dense information.

"You put in the drugs and you put in the pharmacies they want to go to, and it prices them all out," said Alicia Jones, administrator of the Senior Health Insurance Information Program in the Nebraska Department of Insurance and chair of the national SHIP Steering Committee. Without the plan finder, she said, "the only way to do that is go to 29 different websites and do them individually."

Jones said she has flagged about 100 errors with the new tool since Oct. 1, some small but others more significant. She noticed it wasn't importing the correct quantity of drugs, specifically with tubes of medication. It was, she said, giving people way more medicine than needed, "so if you didn't look at it close, it would give very high prices."

One day, she said, the numbers for someone she was helping enroll in a prescription drug plan were off by $2,000. The inconsistencies grew so worrisome that Jones said they "just completely stopped" on Oct. 28 to better assess the situation.

Omdahl, the Medicare consultant in Wisconsin, said it recently took her 32 clicks — she counted — to return to the main page after trying to figure out what limits apply for a specific Medicare Advantage plan's referral and prior authorization requirements.

Every day, each of the 21 Senior LinkAge Line specialists working with Metropolitan Area Agency on Aging, serving the Minneapolis-St. Paul area, have come across at least one error, said Hannah Fox, a Senior LinkAge Line specialist.

"The inaccuracies we're seeing and are concerned about have to do with the medication copays," Fox said. "The plan finder is telling us that a medication is on a plan formulary — or not on the plan formulary — and, again, we're contacting the plan and getting the reverse."

Julie Roles, spokeswoman for the Minnesota agency, said "specialists know what to be looking for, so they can ID something that might be wrong. But an ordinary person who is just looking by themselves really won't be alerted to an issue."

The agency advised beneficiaries who have already enrolled in a plan to verify pricing and other details with the plan provider. It's also asking CMS "to immediately remedy this situation and to extend the open enrollment period for at least three months once the Plan Finder tool is fixed."

In New York, Judith Esterquest said she had previously grown so frustrated using the tool to reevaluate her Medicare options that she gave up. This year, she tried again, finding a prescription drug plan that would save her money. Then she decided to double-check with a friend who also happens to be a SHIP adviser, asking, "Am I reading this right?"

"I'm an educated person. I have a PhD. I should be able to figure it out," she said, adding that she spent "an enormous amount of time" on the National Institutes of Health's website looking at research protocols when her husband was diagnosed with a rare form of leukemia. "I am comfortable with technology, and I had trouble with the Medicare website."

According to federal documents used during a national Medicare education meeting, more than 20 million users visited Medicare.gov to use the plan finder in 2017, accounting for about a third of all traffic to the site.

"Plan Finder users often find the process daunting," the documents said. "Research has shown that users want Plan Finder to provide the following: Simpler results - only information they really need to make a good decision; Personalized information - based on their individual situation. Clarity on out-of-pocket costs."

The U.S. Government Accountability Office laid out a number of issues with the old plan finder in a July report, including "cumbersome" navigation, confusing instructions, difficult filter and sort functions, and incomplete cost estimates for traditional Medicare that makes it difficult to compare with Medicare Advantage.

"So many of these systems are held together by baling wire and chewing gum," said Lisa Bari, an independent consultant who previously worked on health IT, interoperability and artificial intelligence at CMS' innovation center.

The contract for completely redesigning the Medicare Plan Finder was awarded to the software design and engineering company Ad Hoc, which describes itself as being born from "the successful effort to rescue HealthCare.gov after its disastrous initial launch." The federal online insurance marketplace, a major component of the Affordable Care Act, crashed within hours of launching in 2013, and additional technical problems kept it from functioning properly for weeks.

In a July 2018 blog post, Greg Gershman, Ad Hoc's chief executive officer and co-founder, announced that his company had won the contract for developing a replacement plan finder as part of the Medicare Coverage Tools initiative. He said "Ad Hoc proposed a product development process that centers around understanding beneficiaries desires when trying to make care decisions, tests our understanding early and often via a minimum viable product, and adds value to the experience with iterative product enhancements."

Gershman did not respond to requests for comment.

Bari, who did not work on the project, said the issues described to her suggest logic, calculation and coding errors that stem from poor user acceptance testing. That kind of testing, typically the final phase before new software is released, ensures the software can handle real-world tasks and perform up to development specifications. It can be difficult, she said, to find enough people with the necessary skills to do appropriate testing with something as complex as drug coverage.

With a large-scale project that will be used by millions, such as the Medicare Plan Finder, there should be about a month of testing to identify problems, fix them and get everything signed off on, Bari said. Each cohort of features, she added, should go through this process.

"It sounds like they're just patching stuff now," she said, "trying to catch the holes that weren't caught or specified."

Derek Willis contributed to this report.

Dignity Health said its employee, an ER nurse, failed to meet the deadline to add her premature newborn to its health plan, so she was responsible for the medical bills. It rejected her appeals for a year until ProPublica called.

This article was first published on Monday, November 4, 2019 in ProPublica.

 Lauren Bard opened the hospital bill this month and her body went numb. In bold block letters it said, "AMOUNT DUE: $898,984.57."

Last fall, Bard's daughter, Sadie, had arrived about three months prematurely; and as a nurse herself, Bard knew the costs for Sadie's care would be high. But she'd assumed the bulk would be covered by the organization that owned the hospital where she worked: Dignity Health, whose marketing motto is "Hello humankindness."

She would be wrong.

Bard, 30, had been caught up in an unforgiving trend. As health care costs continue to rise, employers are shifting the expense to their workers — cutting back on what they'll cover or pumping up premiums and out-of-pocket costs. But a premature baby, delivered with gaspingly high medical claims, creates a sort of benefits bomb, the kind an employer — especially one funding its own benefits — might look for a way to dodge altogether.

Bard, distracted by her daughter's precarious health and her own hospitalization for serious pregnancy-related conditions, found this out the hard way. Her battle against her own employer is a cautionary tale for every expectant parent.

Bard's saga began, traumatically, when she gave birth to Sadie at just 26 weeks on Sept. 21, 2018, at the University of California, Irvine Medical Center in Southern California. Weighing less than a pound and a half, tiny enough to fit into Bard's cupped hands, Sadie was rushed to the neonatal intensive care unit. Three days after her birth, Bard called Anthem Blue Cross, which administers her health plan, to start coverage. Anthem and UC Irvine's billing department assured her that Sadie was covered, Bard said.

But Dignity's plan, like many, requires employees to enroll newborns within 31 days through its website, or they won't be covered — something Bard said she didn't know at the time.

Meanwhile, believing that everything with her health benefits was on track, Bard spent nine of those first 31 days recovering in her own hospital bed and then had to return to the emergency room because of a subsequent infection. She spent as much time as she could in the neonatal intensive care unit, where Sadie, in an incubator, attached to tubes and wires, battled a host of critical ailments related to extremely premature birth. At times, doctors gave her a 50-50 chance of survival.

"Right from birth she was a fighter," Bard said.

Then, eight days past the 31-day deadline, UC Irvine's billing department alerted Bard to a problem with Sadie's coverage. Anthem was saying it could not process the claims for the baby, who was still in the NICU.

Bard, an emergency room nurse at St. Bernardine Medical Center in San Bernardino, called Dignity's benefits department and made a sickening discovery. Sadie wasn't enrolled in its health plan. It was too late, she was told, she could no longer add her baby.

Dignity bills itself as the fifth-largest health system in the country, with services in 21 states. The massive nonprofit self-funds its benefits, meaning it bears the cost of bills like Sadie's. And it doesn't appear to be short on cash. In 2018, the organization reported $6.6 billion in net assets and paid its CEO $11.9 million in reportable compensation, according to tax filings. That same year, more than two dozen Dignity executives earned more than $1 million in compensation, records show.

Dignity is also a religious organization that says its mission is to further "the healing ministry of Jesus." Surely, Bard remembering thinking, they would show her compassion.

With the specter of the bills hanging over her, Bard said she literally begged Dignity to change its mind in multiple phone calls, working her way up to supervisors. She thought she'd enrolled Sadie by calling Anthem she told them. It was an innocent mistake.

The benefits representatives told her information about the 31-day rule was in the documents she received when she was hired. It didn't matter that it was six years earlier, long before she dreamed of having Sadie, she said. The representative also told her it wasn't just Dignity's decision, the Internal Revenue Service wouldn't allow them to add the baby to the plan.

Under Dignity's plan, Bard could have two written appeals. She got nowhere with either of them. "IRS regulations and plan provisions preclude us from making an enrollment exception," Dignity wrote in its Nov. 30, 2018, response to her first appeal.

IRS officials said they can't talk about specific cases because of privacy issues and could not comment in general in time to meet ProPublica's deadline.

Dignity rejected Bard's second written appeal in a July 8 letter, saying the deadline was included in a packet sent nine days before Sadie's birth. But at that time, Bard had already been admitted to the hospital because of complications. Dignity's letter said it "cannot make an exception to plan provisions."

But the federal regulator of Dignity's plan said such plans can, in fact, make exceptions. An official with the federal Labor Department, which regulates self-funded health benefits, told ProPublica that plans can make concessions as long as they apply them equally to participants. Plus, federal law allows plans to treat people with "adverse health factors" more favorably, the official said.

Bard scrambled, futilely, to see if any publicly funded insurance plan would be able to cover the costs. Meanwhile, the bills began arriving: $206 in November, $1,033 in January, $523 in February and $69,362 in April, with the biggest yet to come. Sadie had spent 105 days in the hospital and had several surgeries — and the bills would be Bard's alone.

Sadie's total hospital tab was nearing $1 million and climbing when ProPublica first spoke to Bard. "I'll either work the rest of my life or file for bankruptcy," she said.

Bard said she and her fiancé — Sadie's father, Nathan Benton — considered delaying their wedding so he wouldn't be legally saddled with the bills as well.

The looming debt, and her employer's rejection, sent Bard reeling when she was already suffering from postpartum depression. She went back to her job while worrying that she might lose her home in Norco. She wept and beat herself up again and again about missing the deadline: How could she not think of something like that? She should've known. She should've been on top of it more.

Anthem declined to comment for this story. UC Irvine, where Bard said the care was excellent, said that cases like Bard's are unusual but may happen in 1% to 2% of births. The hospital tries to work with patients when they get stuck with the bills, a UC Irvine spokesman said.

With the appeals exhausted, the $898,000 bill landed. Bard could see right away that handling it the typical way, with a payment plan, was not going to work. If she chipped away at it at $100 a month, settling the obligation would take more than 748 years. "It would take so long I'd be dead," Bard said.

Bard could see no way out. On Oct. 7, she posted a photograph of the $898,000 bill on Facebook. "When Dignity Health (the company I work for) screws you out of your daughter's insurance…" she wrote.

A week later, ProPublica, which had been flagged to Bard's case while reporting about health insurance excesses, contacted a Dignity media representative.

The next day, Bard got a call from the senior vice president of operations for Dignity Southern California, who apologized and said she'd heard about the situation from the organization's media team and would help. Two days later, Dignity added Sadie to the plan, retroactive to her birth date. It would cover the bills.

Dignity officials told ProPublica that they'd learned about Bard through her Facebook post. Bard said she doubts Dignity would have reversed course without the questions from ProPublica.

Dignity said in a statement that it would review how it could better educate new parents about the enrollment requirement. But Bard still wants to know why her employer would make her suffer through such an ordeal. In a letter Bard received last week, the Dignity benefits department said it had received additional information that caused it to reverse course, but it appears to be the same information that Bard had been telling it all along.

"We based this new decision on certain extenuating and compelling circumstances, which, in all likelihood prohibited you from enrolling your newborn daughter within the Plan's required 31-day enrollment period," the letter said.

Bard recognizes a dark irony in her Christian employer's behavior, and it's made her skeptical. She urged the benefits department to change its process so other employees don't also have their benefits denied. Dignity needs to put its own ideals into practice, she told ProPublica. "You can't put on this facade," Bard said. "You have to live it. You have to walk the walk."

Bard said she and Benton still don't know the final total for Sadie's care. But they sometimes call the sassy and dimpled 1-year-old, who is healthy and reaching developmental milestones, their "million-dollar baby."

Has your employer wrongly denied your health benefits? Please share your story with reporter Marshall Allen at marshall.allen@propublica.org. Have you worked in health insurance or employer-sponsored health benefits? ProPublica is investigating the industry and wants to hear from you. Please complete our brief questionnaire.

Across the country, thousands of people are jailed each year for failing to appear in court for unpaid bills.

This article was first published on Wednesday, October 16, 2019 in ProPublica.

By Lizzie Presser

On the last Tuesday of July, Tres Biggs stepped into the courthouse in Coffeyville, Kansas, for medical debt collection day, a monthly ritual in this quiet city of 9,000, just over the Oklahoma border. He was one of 90 people who had been summoned, sued by the local hospital, or doctors, or an ambulance service over unpaid bills.

Some wore eye patches and bandages; others limped to their seats by the wood-paneled walls. Biggs, who is 41, had to take a day off from work to be there. He knew from experience that if he didn't show up, he could be put in jail.

Before the morning's hearing, he listened as defendants traded stories. One woman recalled how, at four months pregnant, she had reported a money order scam to her local sheriff's office only to discover that she had a warrant; she was arrested on the spot. A radiologist had sued her over a $230 bill, and she'd missed one hearing too many. Another woman said she watched, a decade ago, as a deputy came to the door for her diabetic aunt and took her to jail in her final years of life. Now here she was, dealing with her own debt, trying to head off the same fate.

Biggs, who is tall and broad-shouldered, with sun-scorched skin and bright hazel eyes, looked up as defendants talked, but he was embarrassed to say much. His court dates had begun after his son developed lymphoma, and they'd picked up when his wife started having seizures. He, too, had been arrested because of medical debt. It had happened more than once.

Judge David Casement entered the courtroom, a black robe swaying over his cowboy boots and silversmithed belt buckle. He is a cattle rancher who was appointed a magistrate judge, though he'd never taken a course in law. Judges don't need a law degree in Kansas, or many other states, to preside over cases like these. Casement asked the defendants to take an oath and confirmed that the newcomers confessed to their debt. A key purpose of the hearing, though, was for patients to face debt collectors. "They want to talk to you about trying to set up a payment plan, and after you talk with them, you are free to go," he told the debtors. Then, he left the room.

The first collector of the day was also the most notorious: Michael Hassenplug, a private attorney representing doctors and ambulance services. Every three months, Hassenplug called the same nonpaying defendants to court to list what they earned and what they owned — to testify, quite often, to their poverty. It gave him a sense of his options: to set up a payment plan, to garnish wages or bank accounts, to put a lien on a property. It was called a "debtor's exam."

If a debtor missed an exam, the judge typically issued a citation of contempt, a charge for disobeying an order of the court, which in this case was to appear. If the debtor missed a hearing on contempt, Hassenplug would ask the judge for a bench warrant. As long as the defendant had been properly served, the judge's answer was always yes. In practice, this system has made Hassenplug and other collectors the real arbiters of who gets arrested and who is shown mercy. If debtors can post bail, the judge almost always applies the money to the debt. Hassenplug, like any collector working on commission, gets a cut of the cash he brings in.

Across the country, thousands of people are jailed each year for failing to appear in court for unpaid bills, in arrangements set up much like this one. The practice spread in the wake of the recession as collectors found judges willing to use their broad powers of contempt to wield the threat of arrest. Judges have issued warrants for people who owe money to landlords and payday lenders, who never paid off furniture, or day care fees, or federal student loans. Some debtors who have been arrested owed as little as $28.

More than half of the debt in collections stems from medical care, which, unlike most other debt, is often taken on without a choice or an understanding of the costs. Since the Affordable Care Act of 2010, prices for medical services have ballooned; insurers have nearly tripled deductibles — the amount a person pays before their coverage kicks in — and raised premiums and copays, as well. As a result, tens of millions of people without adequate coverage are expected to pay larger portions of their rising bills.

The sickest patients are often the most indebted, and they're not exempt from arrest. In Indiana, a cancer patient was hauled away from home in her pajamas in front of her three children; too weak to climb the stairs to the women's area of the jail, she spent the night in a men's mental health unit where an inmate smeared feces on the wall. In Utah, a man who had ignored orders to appear over an unpaid ambulance bill told friends he would rather die than go to jail; the day he was arrested, he snuck poison into the cell and ended his life.

In jurisdictions with lax laws and willing judges, jail is the logical endpoint of a system that has automated the steps from high bills to debt to court, and that has given collectors power that is often unchecked. I spent several weeks this summer in Coffeyville, reviewing court files, talking to dozens of patients and interviewing those who had sued them. Though the district does not track how many of these cases end in arrest, I found more than 30 warrants issued against medical debt defendants. At least 11 people were jailed in the past year alone.

With hardly any oversight, even by the presiding judge, collection attorneys have turned this courtroom into a government-sanctioned shakedown of the uninsured and underinsured, where the leverage is the debtors' liberty.

Seated at the front of the courtroom, Hassenplug zipped open his leather binder and uncapped his fountain pen. He is stout, with a pinkish nose and a helmet of salt and pepper hair. His opening case this Tuesday involved 28-year-old Kenneth Maggard, who owed more than $2,000, including interest and court fees, for a 40-mile ambulance ride last year. Maggard had downed most of a bottle of Purple Power Industrial Strength Cleaner, along with some 3M Super Duty Rubbing Compound, "to end it all." His sister had called 911.

Maggard took his seat. He had cropped red hair, pouchy cheeks and mud-caked sneakers. "The welfare patients are the most demanding, difficult patients on God's earth," Hassenplug told me, with Maggard listening, before launching into his interrogation: Are you working? No. Are you on disability? He was diagnosed with schizoaffective disorder, bipolar type, and anxiety. Do you have a car? No. Anyone owe you money you can collect? I wish.

They had been here before, and they both knew Maggard's disability checks were protected from collections. Hassenplug set down his pen. "Between you and me," he asked, "you're never going to pay this bill, are you?"

"No, never," Maggard said. "If I had the money, I'd pay it."

Hassenplug replied, "Well, this will end when one of us dies."

Though debt collection filings are soaring in parts of America, Hassenplug speaks with pride about how he discovered their full potential in Coffeyville long before. A transplant from Kansas City, he was a self-dubbed "four-star fuck-up" who worked his way through law school. He moved to Coffeyville to practice in 1980 and soon earned a reputation as a hard ass. He saw that his firm, Becker, Hildreth, Eastman & Gossard, hadn't capitalized on its collections cases. The lawyers didn't demand sufficient payments, and they rarely followed up on litigation, he said. Where other attorneys saw petty work, Hassenplug saw opportunity.

Hassenplug started collecting for doctors, dentists and veterinarians, but also banks and lumber yards and cities. He recognized that medical providers weren't being compensated for their services, and he was maddened by a "welfare mentality," as he called it, that allowed patients to dodge bills. "Their attitude a lot of times is, 'I'm a single mom and … I'm disabled and,' and the 'and' means 'the rules don't apply to me.' I think the rules apply to everybody," he told me.

He logged his cases in a computer to track them. First with the firm and later in his own practice, he took debtors to court, and he won nearly every time; in about 90% of cases nationally, collectors automatically win when defendants don't appear or contest the case. Hassenplug didn't need to accept $10 monthly payments; he could ask for more, or, in some cases, even garnish a quarter of a debtor's wages. His fee was, and often still is, one-third of what he collects. He asked the court to summon defendants, over and over again. It was the judge's contempt authority that backed him, he said. "It's the only way you can get them into court."

The power of contempt was originally the power of kings. Under early English rule, monarchs were considered vicars of God, and disobeying them was equivalent to committing a sin. Over time, that contempt authority spread to English courts, and ultimately to American courts, which use it to encourage compliance with the judicial system. There is no law requiring that a court use civil contempt when an order isn't followed, but judges in the U.S. can choose to, whether it's to force a defendant to pay child support, for example, or show up at a hearing. A person jailed for defying a court order is generally released when they comply.

When Casement took the bench in 1987, after passing a self-study exam, he didn't know much legalese — he had never been in a courtroom. But attorneys taught him early on that the power of contempt was available to him to punish people who ignored his orders. At first, Casement could see himself in the defendants. "I was a much more pro-debtor aligned judge, much more sympathetic, much less inclined to do anything that I thought would burden them," he told me. "And over the years, I've gradually moved to the other side of the fulcrum. I still consider myself very much in the middle, and I don't know if I am or not."

Once a bustling industrial hub, Coffeyville has a poverty rate that is double the national average, and its county ranks among the least healthy in Kansas. Its red-bricked downtown is lined with empty storefronts — former department stores, restaurants and shops. Its signature hotel is now used for low-income housing. "The two growth industries in Coffeyville," Hassenplug likes to say, "are health care and funerals."

Coffeyville Regional Medical Center is the only hospital within a 40-mile radius, and it reported $1.5 million in uncollectible patient debt in 2017. A nonprofit run in a city-owned building, the hospital accounts for the vast majority of medical debt lawsuits in the county — about 2,000 in the past five years. It also accounts for the majority of related warrants. Account Recovery Specialists Inc. handles its collections, and it does so for hospitals in most Kansas counties. Though the hospitals can direct ARSI and its contracted attorneys to tell judges not to issue warrants, hardly any have. The Coffeyville hospital's attorney, Doug Bell, said that its only motivation is to continue to serve the area, and that Kansas' decision to not expand Medicaid under the Affordable Care Act has had a "dramatic effect on the economic liability of small rural hospitals."

Three nearby hospitals in this rural region have closed in the past several years, meaning ambulances make more trips. A half-hour from Coffeyville, Independence runs its ambulance service at about a $300,000 annual loss. Its bills were at the root of four arrests this year alone. Derek Dustman, who is 36 and works odd jobs, had been driving a four-wheeler when he was hit by a car and rushed to the hospital. Though he was sued for not paying his $818 ambulance bill, he didn't have a license to drive to the courthouse. This spring, he spent two nights in jail. "I never in a million years thought that this would end with jail time," he told me.

For years, Hassenplug has requested that the judge issue warrants on the ambulance service's behalf. When I asked Lacey Lies, the city's director of finance, if she ever considered telling him not to resort to bench warrants, she was puzzled. "You're saying an attorney with no teeth?"

The first time Tres Biggs was arrested, in 2008, he was dove hunting in a grove outside Coffeyville. It had been just a year since his 6-year-old son Lane was diagnosed with lymphoma, and Biggs watched him breathe in the fresh air, seated on a haybale under an orange sky. When a game warden came through to check hunting permits, Biggs' friends scattered and hid. He wasn't the running type, and he took Lane by the hand. The warden ran Biggs' license. There was a warrant out for his arrest. Biggs asked a friend to take Lane home and crouched into the warden's truck, scouring his memory for some misstep.

The last few years had been a blur. His wife, Heather, had quit her job as a babysitter to care for their son. Then, she got sick. Some days, she passed out or felt so dizzy she couldn't leave her bed. Her doctors didn't know if the attacks were linked to her heart condition, in which blood flowed backward through a valve. To provide for his wife, son and two other kids, Biggs worked two jobs, at a lumber yard and on construction sites. He didn't know when he would have had time to commit a crime. He'd never been to jail. As he stared out the window at the rolling hills, his face began to sweat. He felt his skin tighten around him and wondered if he would be sick.

The warrant, he learned at the jailhouse, was for failure to appear in court for an unpaid hospital bill. Coffeyville Regional Medical Center had sued him in 2006 for $2,146, after one of Heather's emergency visits; neither of his jobs offered health insurance. In the shuffle of 70-hour workweeks and Lane's radiation, he had missed two consecutive court dates. He was fingerprinted, photographed, made to strip and told to brace himself for a tub of delousing liquid. His bail was set at $500 cash; he had about $50 to his name.

His friend bailed him out the next morning, but at the bond hearing, the judge granted the $500, minus court fees, to the hospital. Biggs compensated his friend with a motorboat that a client had given him in exchange for a hunting dog. But it wasn't long before the family received a new summons. In 2009, a radiologist represented by Hassenplug sued them for $380.

Some court hearings fell on days when Lane had treatment, at a hospital in Tulsa, an hour south. Heather refused to postpone his care. Lane's condition was improving — in a year, he would be cancer-free — and his dirty blond hair was sprouting again. Her health, though, had taken a turn. She began having weekly seizures, waking up on the floor, confused about where their Christmas tree had gone or why a red Catahoula puppy was skidding around their ranch house. Her doctors concluded she had Lyme disease, which was affecting her nervous system and wiping her short-term memory. Each time she woke up, she repeated: "Don't take me to the hospital."

Biggs was still on the hook for the bill that had landed him in jail; bail had covered only part of it, and the rest was growing with 12% annual interest. The hospital had garnished his wages, and the radiologist had garnished his bank account, seizing contributions that his family had raised for Lane's care. Living on $25,000 a year, Biggs couldn't afford to buy insurance. His family was on food stamps but didn't qualify for Medicaid, a federal insurance program for people in poverty. Other states were about to expand it to cover the working poor, but not Kansas, which limited it, for families of his size, to those who earned under $12,000. Like millions of others across America, he and Heather fell into a coverage gap.

By 2012, the Biggs family had accrued more than $70,000 in medical debt, which it owed to Coffeyville Regional Medical Center and other hospitals, pediatricians and neurologists. Some forgave it; others set up lenient payment plans. Coffeyville's was the only hospital that sued. The doctors who took them to court were represented by Hassenplug.

Biggs began to panic around police, haunted by the fear that at any moment, he might be locked up. That spring, outside the Woodshed gas station, he spotted a sheriff's deputy who was also an old friend. To shake off his dread, he asked the friend to run his license. The deputy found another warrant, signed by Casement, involving the $380 radiologist's bill. "You're not really going to take me in, right?" Biggs remembers asking. The deputy said he had no choice. Bail, as usual, was set at $500.

The family filed for bankruptcy, a short-term fix that erased their debt but burdened them with legal fees. They lost their home and started renting. Biggs ultimately got a job that offered insurance, as a rancher, covered by Blue Cross Blue Shield. But it required Biggs to pay the first $5,000 before it covered medical expenses. When chest pain hit him as he worked cattle in the heat, and he began vomiting, the only nearby hospital was Coffeyville's. In 2017, the hospital sued again. It was the family's sixth lawsuit for medical debt.

Sitting in Casement's courtroom this July, Biggs calculated that he was losing about $120 by taking time off from work to attend this hearing. "I haven't received a bill," he told me, slouched over his turquoise shorts. "The only thing I received was this summons." Around noon, he finally sat down with an ARSI representative, who explained that the underlying bill had been garnished from his wages, but he still owed $328 in interest and court fees. He had another couple thousand dollars in collections for separate bills he hadn't paid, for which he hadn't yet been sued. He said the most he could afford to pay, every two weeks, was $12.50.

Before the end of the Tuesday docket, Casement returned to the courtroom to read off the names of the hospital's defendants. Five had failed to show up for contempt citations, to give their reasons for missing their debtor's exams. Casement saw that two of the no-shows hadn't been properly notified of the hearing, so attorneys would need to try to reach them again. The judge read the names of the other three defendants and told the hospital's collections lawyer, "That would be a bench warrant if you want it."

The following morning, I was reading court files in the clerks' office when Christa Strickland arrived at 10:20 in flip-flops and black leggings, her caramel hair wrapped in a bun atop her head. She ran her finger down a docket on the bulletin board and asked why her case wasn't listed. When the clerk pulled up her file, she told Strickland that her contempt hearing had been on Tuesday and she was one day late. "You need to call the law office of Amber Brehm," the clerk insisted, referring to ARSI's contracted lawyer, who represents the hospital. She handed over the phone number.

Strickland sat on a hard bench and took out her cellphone. She had saved the hearing in the wrong day on her calendar, but she had taken the day off from work and wanted to clear up the misunderstanding. "I had a court date," she said when a man answered at the law office. "I thought it was today but apparently it was yesterday. I'm just needing to see if I can set something up?"

"By not appearing at that, the court would be in the process of issuing a bench warrant," he said.

"What does that mean?" Strickland asked, shaking her head.

"You don't know what a bench warrant means?" he asked. "That means you will be arrested and taken to jail and ordered to post bond."

"Oh my God." Strickland squeezed her eyes shut, wetness smudging her mascara. She poked at her cheek with her index finger. Her father was a preacher. She'd never been in trouble with the law. She had made a mistake, she tried to explain. She wanted to make an arrangement to pay.

The man on the phone told her that it might take a couple weeks before the court processed her warrant paperwork, which the law office had not yet submitted. Once the judge issued the warrant, she could turn herself in. Strickland wanted to scream, I'll pay the bill, don't make me go to jail! but she didn't have the money. Instead, she looked at the ceiling and asked: "Turn myself into the court? The police station?"

"The Sheriff's Department," he responded.

"They're here in the same building," she said. "I won't leave here until I get this figured out. Thank you!"

She hung up. Prick, she muttered to herself. You're going to talk to me like I'm a freaking idiot? That's not okay. Educate me. The court has to process it? Her mind kept moving in circles. She herself worked in debt collection, for an auto title lending company. She understood that everyone was doing their job. Still, she couldn't grasp how this bill had gotten this far.

Before she had taken this position, during her second pregnancy, her right breast had developed a chronic infection. In 2008, she was uninsured, needed surgery to remove the swollen abscess and ran up a $2,514 bill. More than a decade later, she was still chipping away at a balance that, because of interest and court fees, had more than doubled to $5,736. She had fallen behind on her monthly payment plan and now worried that her booking photo would be on Mugshot Monday, a Facebook album run by the Police Department. She imagined what she would tell her boss: I went to jail … because I missed a court date … for medical bills. It sounded absurd.

She spotted a sheriff's deputy in a bulletproof vest with a name tag that said Bishop and a pistol on his hip. "Hey!" she called out, explaining her phone call and how the man said something about a warrant and turning herself in. Bishop radioed into dispatch and smiled with an update: "There's no warrant in the system yet," he told her.

"Yet!" Strickland replied, deflating his look of reassurance. "That's what I'm worrying about."

"You better give Amber a call back," Bishop said.

When I asked ARSI about how attorneys decide to request warrants, Joshua Shea, who is general counsel, told me that they don't. The judge can choose to issue one if court orders are not followed, he said. But Casement said the opposite, telling me that he gave the choice to the attorneys. "I'm not ordering a bench warrant. My decision is to give them that option," Casement told me. "Whether they exercise it is up to them, but they have my blessing if that's what they want to do."

Shea sent me an eight-page email to make clear, in large part, that ARSI, as a collection agency, has no involvement in the courts, and that Brehm is a lawyer whom the agency contractually employs and who represents the hospital directly. Her email address, though, has an ARSI domain, and her resume lists her as ARSI's director of legal. Brehm said that court hearings aren't the only option for debtors, who can call her instead and answer questions under oath. Shea said nobody — not the hospital, ARSI, Brehm or the court — uses the threat of jail to "extract payment."

Strickland reached Brehm after several days, and the attorney agreed to a new hearing. On Aug. 13, when they met in court, Brehm sat at the front of the room.

"We're giving you a second chance on that citation; just to try to take care of this without there having to be any sort of bench warrant," the lawyer said. "I want to make sure that we're all on the same page about the consequences of not coming into court when the order has been issued."

Strickland nodded.

"Again, if you set a payment plan and keep it," Brehm said, "we won't have to worry about that."

In some courthouses, like Coffeyville's, collection attorneys are not only invited to decide when warrants are issued, but they can also shape how law is applied. Recently, Hassenplug came to believe that debtors were only attending every other hearing in a scheme to avoid jail, and he raised his concern with the judge. He suggested that the judge could fix this by charging extra legal fees; Casement wrote a new policy explaining that anyone who missed two debtor's exam hearings without a good reason would be ordered to pay an extra $50 to cover the plaintiff's attorney fees. If they didn't pay, they would be given a two-day jail sentence; for each additional hearing that they missed, they would be charged a higher attorney fee and get a longer sentence.

Most states don't allow contempt charges to be used for nonpayment, and some, like Indiana and Florida, have concluded that it is unconstitutional. Michael Crowell, a retired law professor at the University of North Carolina and an expert in judicial authority, reviewed Casement's policy. "You can't lock people up for contempt for failing to pay unless you have gone to the trouble to determine that they really have the ability to pay," he said. Casement told me he hadn't made findings on ability to pay before ordering defendants to foot attorney's fees, "but I know that's something the court should consider," he said. He also made plain why he wrote the policy: "Mr. Hassenplug and Brehm's outfit have asked me to." (Brehm denied she requested this.)

Casement has not done everything the debt collection lawyers have suggested. At first, he agreed to their requests to set bail at the amount of the debt, but he eventually settled on $500. "Most people can come up with $500," he said. "It may not be their money, but they know someone who will pay." He made sure no one was arrested unless they'd been reached by personal service or certified mail.

Kansas law allows courts to order debtors in "from time to time," leaving discretion to judges. Casement limited the frequency of Hassenplug's debtor's exams to once every three months. He came to the decision by his own logic around what seemed like a reasonable burden for defendants, and it remains his personal policy today. The law also states that anyone found to be disabled and unable to pay can only be ordered to appear once a year. Without an attorney, debtors like Kenneth Maggard don't know to assert this right.

Allowing bail money to count toward collections raises some of the most critical legal questions. Hassenplug told me that he thinks it's great that cash bail is applied to the debt. "A lot of times, that's the only time we get paid, is if they go to jail," he said. Peter Holland, the former director of the Consumer Protection Clinic at the University of Maryland Law School, explained that this practice reveals that the jailing is not about contempt, but about collection. "Most judges will tell you, 'I'm working for the rule of law, and if you don't show up and you were summoned, there have to be consequences,'" he explained. "But the proof is in the pudding: If the judge is upholding the rule of law, he would give the bail money back to you when you appear in court. Instead, he is using his power to take money from you and hand it to the debt collector. It raises constitutional questions."

Congress has not acted on advocates' calls to amend the Fair Debt Collection Practices Act to prohibit collectors from requesting warrants. There are also no current efforts to bar nonprofit hospitals or medical providers that receive funds through Medicare or Medicaid from seeking warrants. Some states have reformed their laws, to make sure defendants are properly served or to prohibit wage garnishments for debt. But legal experts on collections say that more remains to be done, like taking jail out of the equation and instead requiring debtors to sign a financial affidavit or a promise to appear.

Shea, from ARSI, said that using the legal process is time-consuming and costly — a last resort; arrests are "the least desirable stage for any case to reach for all involved." Even after lawsuits are filed, they try to connect eligible debtors with the Coffeyville hospital to apply for financial assistance, he said. Last year, the hospital wrote off $1.7 million in charity care, said Bell, the hospital lawyer. "That is evidence of a hospital that cares."

Casement said he did not consider the legality of his policies a problem. He placed some blame on the health care system. "What we have isn't working," he said. "As a lifelong Republican, I would probably be hung, but I think we need health care for everybody with some limits on what it's going to cost us."

The way he saw it, he had wide latitude to enforce compliance with a court orders, though he acknowledged that creditors used bail money to their advantage. "I don't know whether the Legislature intended it to be used that way or not," he told me. "I have not had enough pushback from the defendants' side to give me the impression that I'm really abusing this badly."

Before I left Coffeyville, I sat down with Hassenplug in the low-ceilinged courtroom. I asked him whether he thought that the system in Coffeyville was effectively imprisonment for debt, in a country that has outlawed debtors' prisons. "The only thing they're in jail for is not appearing," he replied. "I do my job, I follow the law. You just have to show up in court."

Debt collection is an $11 billion industry, involving nearly 8,000 firms across the country. Medical debt makes up almost half of what's collected each year. Today, millions of debt collection suits are overwhelming state courts. The practice is considered a "race of the diligent," where every creditor is rushing to the courthouse, hustling to get the first judgment, in order to be the first to collect on a debtor's assets. In Hassenplug's view, though, this work is not the rich taking from the poor. He laughed at how locals spread rumors, saying that he seized wheelchairs or Christmas trees. Once, he confessed, he took a man's Rolex, only to find out it was a fake. Some months, he said, even his law office could not make ends meet.

After a couple of hours, a clerk poked her head into the courtroom and told us it was time to leave. Hassenplug and I began to walk out, and on the terrazzo steps, he asked if I wanted to see his buildings. He owned five of them on a shuttered stretch of town. He wondered out loud if he was making a mistake by inviting me, but he was pleased when I accepted. "There ain't any place on earth quieter than downtown Coffeyville," he said, leading me into the silent streets.

He walked me through the alleys under a cloudless sky, and when he arrived at one of his buildings, he tapped a code to his garage. The door lifted, and inside, five perfectly maintained motorcycles, Yamahas and Suzukis, were propped in a line. To their left, nine pristine, candy-colored cars were arranged – a Camaro SS with orange stripes, a Pontiac Trans Am, a vintage Silverado pickup with velvet seats. He toured me around the show cars, peering into their windows, and mused about what his hard work had gotten him.

Lizzie Presser covers health and healthcare policy at ProPublica. She previously worked as a contributing writer for The California Sunday Magazine, where she wrote about labor, immigration, and how social policy is experienced.

Design and production by Jillian Kumagai and Agnes Chang.

Darryl Young suffered brain damage during a heart transplant at Newark Beth Israel and never woke up. Doctors kept him alive for a year to avoid federal scrutiny.

This article was first published on Thursday, October 3, 2019 in ProPublica and was co-published with NJ Advance Media.

By Caroline Chen

This story was co-published with NJ Advance Media.

On a Thursday morning this past April, 61-year-old Darryl Young was lying unconscious in the eighth-floor intensive care unit of Newark Beth Israel Medical Center. After suffering from congestive heart failure for years, Young, a Navy veteran and former truck driver with three children, had received a heart transplant on Sept. 21, 2018. He didn't wake up after the operation and had been in a vegetative state ever since.

Machines whirred in his room, pumping air into his lungs. Nutrients and fluids dripped from a tube into his stomach. Young had always been fastidious, but now his hair and toenails had grown long.

A nurse suctioned mucus from his throat several times a day to keep him from choking, according to employees familiar with his care. His medical record would note: "He follows no commands. He looks very encephalopathic" — brain damaged.

That day, in another wing of the hospital, where a group of surgeons, cardiologists, transplant coordinators, nurses and social workers gathered for their weekly meeting in a second-floor conference room, his name came up.

"Anything on Darryl Young?" asked cardiologist Dr. Darko Vucicevic, according to a recording of the meeting obtained by ProPublica.

"Need to keep him alive till June 30 at a minimum," responded Dr. Mark Zucker, director of the hospital's heart and lung transplant programs.

Since the transplant, Young had suffered from pneumonia, strokes, seizures and a fungal infection. The Newark transplant team believed that he would never wake up or recover function, according to current and former staff members familiar with his case, as well as audio recordings. Yet they wanted to do all they could to keep his new heart beating.

The recordings show that the transplant team was fixated on keeping him alive, rather than his quality of life or his family's wishes, because of worries about the transplant program's survival rate, the proportion of people undergoing transplants who are still alive a year after their operations.

Federal regulators rely on this statistic to evaluate — and sometimes penalize — transplant programs, giving hospitals across the country a reputational and financial incentive to game it. Newark Beth Israel's one-year survival rate for heart transplants had dipped, and if Young were to die too soon, the program's standing and even its own survival might be in jeopardy.

June 30, Zucker explained at the meeting, was the date of the next report by a federally funded organization that tracks transplant survival rates. "If he's not dead in this report, even if he's dead in the next report, it becomes an issue that moves out six more months," he said in the recording.

Zucker cautioned the staff against offering Young's family the option of switching from aggressive treatment to palliative care, which focuses on comfort, until September, which would mark one year since his transplant. "This is very disingenuous, right? It's very unethical."

Dr. Martin Strueber, a transplant surgeon who has since left the hospital, then expressed hope that the transplant team could "move the program forward ... to a status that we never ever have this discussion again," or even have to "think about this ethical dilemma of keeping somebody alive for the sake of the program."

Dr. Navin Rajagopalan, the heart program's medical director, wanted to make sure the family hadn't already requested palliative treatment. "They've not asked...for us to withdraw care?" he asked. "I'm playing devil's advocate" he went on. "It's not as if they're asking for this and we're saying no, we cannot do this."

Zucker replied, "We haven't refused anything they've asked." He added, "We just haven't raised withdrawing it."

In the ensuing months, the doctors continued to leave Young's family in the dark, according to his sister Andrea and employees familiar with Young's care. They didn't want to run any risk that the people who loved him would interfere with their agenda: boosting the program's numbers. "I'm not sure that this is ethical, moral or right," Zucker told the team at the April meeting, but it's "for the global good of the future transplant recipients."

In 2007, the U.S. Centers for Medicare and Medicaid Services, which tracks outcomes of all organ transplants, set quality standards after a number of high profile mishaps at other hospitals, including a teenage girl receiving a heart and lung with the wrong blood type. Under those rules, the one-year survival rate has been "the magic number," according to Laura Aguiar, principal of consulting firm Transplant Solutions.

If a program's survival rate fell too far under its expected rate, which was calculated by a CMS algorithm, the agency could launch an audit. If the audit uncovered serious problems, CMS could pull a program's Medicare certification, meaning that the federal health care insurer would stop reimbursing for transplants. This penalty can be "devastating," Aguiar said, because many commercial insurers and some state Medicaid plans only pay for procedures at Medicare-approved programs. Hospitals charge about $1.4 million for a heart transplant, consulting firm Milliman reported in 2017.

In the past decade, more than 20 transplant programs lost Medicare funding after CMS found deficiencies; most shut down, according to the agency. An additional 40 reached a Systems Improvement Agreement with CMS, allowing them to continue receiving federal funding while getting back into compliance with the agency's requirements.

In 2008, Johns Hopkins' liver transplant program entered into such an agreement with CMS because of lower-than-expected performance outcomes. More recently, CMS cut off funding to Baylor St. Luke's Medical Center's heart transplant program, following an investigation by ProPublica and the Houston Chronicle revealing a high rate of patient deaths. The hospital initially appealed but then opted instead to reapply at a later date.

To bolster their survival rates, some transplant centers have turned down patients who were considered too sick or rejected organs that were deemed imperfect. Critics have said that this conservative approach can deprive patients of the chance to receive lifesaving treatment and waste potentially usable organs at a time when the demand for them far outpaces the supply.

Newark Beth Israel shows another facet of how transplant providers can game the system, a ProPublica investigation found. Worried that the transplant program's existence was threatened by a downturn in its survival rate, doctors appeared to tailor medical decisions to the metrics for at least four patients, and they sometimes didn't consult adequately with patients and family members.

This story is based on medical records, emails and text messages, and interviews with family members as well as eight current and former staff at Newark Beth Israel, who spoke on the condition of anonymity for fear of jeopardizing their jobs or future employment in the field. The recordings were corroborated by staff members who were present during those discussions and verified the identities of the speakers.

Newark Beth Israel said in a statement that, in response to the concerns raised by ProPublica, it is "conducting an evaluation and review of the program, its processes and its leadership."

In an apparent reference to the recordings, it said that "disclosures of select portions of lengthy and highly complex medical discussions, when taken out of context, may distort the intent of conversations." The hospital also said that its transplant program "has saved countless lives" and consistently met or exceeded all regulatory guidelines to maintain funding and certification, including providing one-year survival rates.

The hospital didn't respond to questions about Young, even though his family signed a release allowing Newark Beth Israel to discuss details of his care. A spokeswoman said its statement was made on behalf of Zucker and other transplant team members, as well as hospital administrators. Strueber declined comment separately, saying he "was not directly involved in the care of Mr. Darryl Young nor in the interactions with his family."

The hospital also emphasized its commitment to being transparent with patients and their families. "Our patients are our utmost priority and communication with our patients and their families is paramount in enabling our team to provide the best and most comprehensive care," it said.

In Darryl Young's case, though, the staff's reluctance to discuss treatment options with his family appears to run counter to the American Medical Association's code of ethics, which encourages physicians to communicate "routinely" with patients about their care goals. When a patient is not able to communicate, the physician "has an ethical responsibility to candidly and compassionately discuss these issues with the patient's authorized surrogate and document the surrogate's decision in the medical record." Withdrawing life-sustaining treatment is ethically acceptable, the AMA adds. "When an intervention no longer helps to achieve the patient's goals for care or desired quality of life, it is ethically appropriate for physicians to withdraw it."

After listening to the recordings, Young's daughter, Taccara Beale, was furious. "How dare you take it upon yourself to withhold such information from any family?" Beale said. "They took a decision away from us."

Arthur Caplan, head of the Division of Medical Ethics at NYU School of Medicine, reviewed transcripts of the recordings, including discussions about Young. "The management of this patient is egregiously unethical," he said. "Prolonging 'dying' to preserve a flawed transplant program makes a mockery of transplant medicine and is an assault on both ethics and compassion."

Founded in 1901, Newark Beth Israel has 665 beds and prides itself on its heart and lung transplant program. RWJBarnabas Health, a hospital network with which Newark Beth Israel is affiliated, counts it among "the best heart transplant hospitals that patients can trust."

A large banner on the hospital's brown brick facade proclaims, "1,000 hearts transplanted. Countless lives touched." One of the top 20 programs in the country by volume, it has performed 1,090 heart transplants to date, according to the hospital.

Another banner declares that Newark Beth Israel has New Jersey's only lung transplant program. The hospital transplants far fewer lungs than hearts; 16 lungs in 2017 and 15 in 2018, compared with 49 hearts in 2017 and 38 in 2018. The lung program shut down temporarily in 2013 because of a lack of staff. For most of 2019, it has had only one lung surgeon.

Zucker has been the director of the heart transplant program for 30 years. His team currently includes five cardiologists and a surgeon, according to the hospital's website, plus nurses, transplant coordinators, social workers, dieticians and a pharmacist.

Dr. Margarita Camacho, the surgeon who performs the vast majority of heart transplants, including Young's, has been at the hospital since 2005. She's well known for her practice of retrieving donor hearts in person: traveling to the donor's hospital, inspecting the heart and bringing it back for surgery. A donated organ should be used within four to six hours of removal, so once a heart becomes available, it needs to be flown to the recipient's hospital and rushed to the operating room. In a 2013 video posted online by Newark Beth Israel, Camacho boards a plane and says, "I'm very well suited for this job, because I love it, I really do love what I do — I'm very fortunate, but I also can survive on cat naps."

A heart transplant is a complex and difficult operation. Surgery can last eight hours. Afterward, patients must take medication for the rest of their lives in order to prevent their immune system from rejecting the new heart.

Nonetheless, most transplants are successful, at least by the government's one-year metric. The national probability of surviving for a year for heart patients transplanted between January 2016 through June 2018 was 91.5%, according to the Scientific Registry of Transplant Recipients, which is funded by the U.S. Department of Health and Human Services to track and analyze transplant outcomes. (SRTR publishes the semiannual reports that Zucker referred to when he said that Young needed to be kept alive until at least June 30.)

From 2008 through 2017, Newark Beth Israel's annual one-year survival rate for patients receiving a heart transplant has never dipped below 85.7%, rising as high as 96.9% in 2012, according to SRTR. But its performance declined in 2018 for reasons that remain unclear. Of 38 patients who received a heart transplant, six have already died within a year of their surgery, according to current and former staff. The causes ranged from complications after severe oxygen deprivation to the brain to a parasitic infection.

The six deaths translated into an 84.2% survival rate. If Young were to be the seventh, the rate would slip further, to 81.6%, well below the national average — and unlikely, the transplant team worried, to escape the federal government's attention.

For nearly a year now, Andrea Young has commuted an hour each way from Trenton every week to sit by her older brother's bedside, holding his hand and praying for his recovery. She is also Darryl's health care proxy; he had designated her to make decisions about his treatment, in the event that he was unable to do so himself.

Andrea, who is 59, retired at 55 from a decadeslong position as an analyst at the New Jersey Motor Vehicle Commission. She and Darryl had always been close. He joined the Navy at the age of 18 and served four years on the USS Kitty Hawk, naval records show. After spending time on opposite coasts, both siblings returned to New Jersey, where their mother's family lived, to settle down. They both loved keeping up with the news, sometimes calling each other as late as 11 p.m. to discuss a breaking story on cable TV.

"We talked every day," she said. "We'd call sometimes two times, even four times in a day. Now I feel a big void."

After a heart attack, Young received a mechanical pump, known as a left ventricular assist device, or LVAD, in 2014, according to his sister and medical records. The implanted device is often used as a bridge to transplant, helping to keep a patient's heart going while waiting for an organ match. The LVAD comes with a control unit, and batteries are worn in a holster. Showers are awkward because the equipment must stay dry.

Young was always impeccably dressed, wearing a suit to medical appointments. He spent so much time chatting with the nursing staff that the meetings would often run over, according to employees. He never complained, his sister said. He loved life and was hopeful that a heart transplant would help him continue to enjoy it.

After about three years on the waitlist, Young received a call from Newark Beth Israel late at night on Sept. 20, 2018, Andrea recalled. A heart was available. He was told to arrive at the hospital as soon as possible and went into surgery the following day. At Newark Beth Israel, surgery candidates aren't required to spell out their wishes for care in the event of being incapacitated, and Young didn't.

Initially, his family was told that the operation had gone well, and there was no reason to worry, his sister said. A few days after the transplant, Andrea Young spoke with Camacho on the phone and asked why her brother hadn't woken up yet. Camacho reassured her, saying she'd seen many patients in similar situations make "a full recovery," Andrea recalled.

As days turned into weeks, she became increasingly concerned. "I didn't have a good feeling," she said. "None of the doctors were very forthcoming. I felt like they were hiding something."

About three weeks after the surgery, Andrea Young said, she requested a meeting with her brother's medical team. But first, she went to her local library and checked out some neurology textbooks. Although her hands were full with two children she had adopted — brothers who were 5 and 6 years old — she made time to pore over the textbooks, trying to prepare so she could ask the correct questions. "I studied them for six hours, trying to understand," she said.

At the meeting, she asked if the surgeon had seen any sign that her brother's brain was deprived of oxygen during the surgery. Camacho said no, Young recalled. It was another cardiologist, whose name Andrea can't recall, who told her around this time that Young's MRI showed brain damage.

"I asked, Which part of the brain? And he said, 'Every part, but just a very small part of each section,' and that gave me hope. Now I know it was false hope."

Typically, if a patient suffers brain damage in an operation and doesn't wake up, doctors are supposed to meet with the family to explain the prognosis and options for care.

"You'd explain in a direct and empathetic way that it's not likely that this person will recover in a clinically meaningful way and then the question you'd hone in on is, 'If your loved one were awake to hear this, what would he or she want?'" said Dr. Ali Zarrabi, assistant professor of medicine and palliative care physician at Emory University School of Medicine.

The options presented would range from hospice care — which typically entails removing machine support, such as a ventilator, and not administering antibiotics for an infection — to a do not resuscitate order in case of cardiac arrest, to life-sustaining therapy.

But even though a few staff members suggested that the team schedule a meeting for Young's family to discuss options for his care, including hospice, the medical staff didn't have this conversation with Young's family, according to Andrea and employees familiar with his care.

Doctors also didn't inform Andrea when her brother contracted C. auris, a dangerous fungal infection that the U.S. Centers for Disease Control and Prevention says is a "serious global health threat" because it is difficult to identify and is often resistant to multiple drugs.

According to text messages reviewed by ProPublica, Darryl Young had been treated for the infection at least once by early March. But Andrea said she only learned about it when a social worker mentioned it to her in late May. She searched on Google for information about the fungus.

"I had to ask for every meeting," Andrea said. "I had to dig and dig and dig. I was on my own trying to do the technical research."

Several nurses as well as a social worker were remarkably compassionate and caring toward her brother, Andrea said. Still, she struggled to get basic cosmetic care for him, she said. It grieved her to see his physical appearance neglected, with his toenails overgrown. She said she requested that the medical staff trim his nails, but it took four months before someone finally tended to them.

Leaders of the transplant program saw no alternative to keeping Young alive, employees said. Camacho, the heart surgeon, has more than once told staff that Young needs to "take one for the team," according to two people with direct knowledge of these remarks.

At a meeting in May, Zucker articulated the trade-off. "This is a very, very unethical, immoral but unfortunately very practical solution, because the reality here is that you haven't saved anybody if your program gets shut down," he said, according to an audio recording obtained by ProPublica.

Young "unfortunately became the seventh potential death in a very bad year, all right, and that puts us into a very difficult spot," Zucker said.

If Young died too soon, he continued, CMS might force the program to enter a Systems Improvement Agreement. "You haven't saved anybody if you spend $2 million in an SIA trying to defend your program, bringing outside reviewers in for two years to supervise every single transplant you do."

According to Aguiar, the transplant consultant, $2 million is actually a low estimate of what an SIA would cost a hospital. "Usually transplants are the treatment of last resort, and you have patients referred as they're approaching end-stage organ failure, so if there's no more transplant program there, referrals can dry up," causing a hospital to lose business beyond the direct expense of an SIA, she said.

For several months, administrators at a weekly hospital-wide meeting known as the "Bed Board" kept asking the transplant team why Young was occupying a hospital bed, rather than being sent to a long-term care facility, according to the recordings.

Hospitals typically prefer short stays because they need beds for other patients and can start losing compensation if insurance runs out or the insurer thinks the patient should be released or transferred.

Care in an ICU unit typically costs more than $3,000 a day, according to a 2005 study of U.S. hospitals' billing data, and about $1,000 more when the patient is on a ventilator. (Young is supported by a ventilator overnight.) He is covered by Medicare and Medicaid, but Newark Beth Israel doesn't bill insurers until a patient is discharged. So, for the time being, the hospital was absorbing the cost of Young's stay.

As the hospital's chief operating officer, Douglas Zehner ran the "Bed Board" meetings. At a July transplant team meeting, Zucker said that Zehner approved the plan to keep Young in the hospital, according to an audio recording obtained by ProPublica.

Zucker said Zehner called him one night and said, "We, as an administration, have made a decision ... to house this man indefinitely so that he doesn't become a mortality," according to the recording. Zehner was promoted July 30 to regional chief financial officer for RWJBarnabas Health.

No matter how much treatment Young received, his prospects for long-term survival in a vegetative state were dim. Patients like him can be sustained by ventilators and feeding tubes but are likely to die within a couple of years, said Dr. Randi Huo, a palliative care physician at the Everett Clinic in Everett, Washington.

"You're looking at recurrent infection — he's fed through a tube, he could get bed sores, he has an opening in his throat, which means he's at risk of pneumonia," she said. "Eventually, organisms will become resistant enough that nothing works. Then he would become septic and die."

Even if Young isn't in pain or distress, Huo said, his loved ones should decide the course of his care. "If the care he's receiving is not appropriate to the life he wants to live — if medicine is not serving him, then why are [they] doing this?"

The one-year survival rate has dictated Newark Beth Israel's treatment of other patients besides Young, according to employees and the recordings.

"A lot of you weren't here for our first lung transplant when we reopened, after we reopened the program. The first lung transplant stayed at the hospital until day 366, was sent out to rehab and died that day," Camacho said at the May meeting, according to a recording obtained by ProPublica.

The month before, Zucker had a similar recollection: "We did the same thing once with a lung transplant patient and this was just critical, remember? Keep that lady alive?"

It isn't clear if Camacho and Zucker were talking about the same patient. One former employee recalled a lung transplant patient who stayed for exactly a year. "It was done on purpose and they wouldn't let her be discharged out," the ex-employee said.

Even for transplant patients whose conditions were not as critical as Young's, the one-year date has been a consideration. Yosry Awad went to Newark Beth Israel on May 13 for a routine biopsy of his new heart, according to a medical record. His one-year anniversary was coming up in two weeks, on May 27.

During his hospital visit, the checkup revealed that a measure of the pressure of the blood in the heart, called filling pressure, was high, according to staff familiar with his care. The medical team decided to admit Awad and treat him with diuretics, which can help reduce blood pressure.

Awad had suffered multiple serious complications after his transplant surgery the previous year, including a cardiac arrest that required his heart to be temporarily supported by a machine that performs the functions of the heart and lungs, according to medical records.

Given his history of complications, Newark's staff was anxious to make sure he would reach his one-year date, according to three people familiar with Awad's case.

A week and a half later, Awad was still at Newark Beth Israel. By that point, there was no medical reason requiring that he stay in the hospital, according to the three people. But the medical team delayed his discharge.

A medical record viewed by ProPublica stated that Awad "remains in very good spirits and is hopeful to go home prior to the holiday weekend. Per the medical team he will remain hospitalized through 5/27 to hit his one year anniversary."

After the weekend, the transplant team joked about Awad. "Well today is his one year, so congratulations!" said cardiologist Vucicevic. "Discharge!" chimed in medical director Rajagopalan, according to an audio recording and employees who witnessed the conversation.

In an interview at his home, Awad acknowledged that he had wanted to go home in May and spend Memorial Day weekend with his family. As far as he knew, he said, the hospital kept him because of his blood pressure problems. He added that he is grateful for the heart he received at Beth Israel. "I know I'm lucky," he said.

"We are not doctors or nurses, how would we know" whether his stay was justified, asked his sister and caregiver, Nagwa Helmy, who said she was satisfied with the hospital's care of her brother. Although Awad signed a release allowing the hospital to discuss his care, it did not respond to questions about him.

Another patient, who received both a heart and kidney transplant, similarly had a hospital stay extended until his one-year anniversary, according to two staff members familiar with his care. The patient's family did not respond to requests for comment.

Medical records reviewed by ProPublica show he was admitted at the end of last January with abdominal pain. About three weeks before the anniversary, Zucker instructed staff to "keep him alive," one employee recalled. When he reached the milestone on a Thursday in late March, the record noted, "1 year anniversary."

He was discharged the following Monday.

It wasn't until late July, 10 months after Young's surgery, that anyone at Newark Beth Israel consulted his sister about his future care.

Andrea Young recalled that she was leaving the hospital, already late to pick up her sons from school, when cardiologist Dr. Laurie Letarte asked her permission to do a procedure to see if the fungal infection had spread to Darryl Young's heart.

Letarte asked "what I would like to have done for my brother with respect to his treatment," Young recalled. Letarte, though, didn't go into detail about her brother's prognosis or options such as a do not resuscitate order.

Taken aback, Andrea said she responded, "I'm not making any absolute decisions." She said she asked Letarte to continue standard care for her brother for now. Nobody from the hospital followed up on the 10-minute conversation, Andrea said.

A few weeks later, sitting in her living room while her two boys zoomed up and down the stairs, bouncing onto the couch for a hug then running off to grab toys, Andrea mused about her desires for Darryl.

Wrestling with the pressure of making the correct decisions for her brother, she said she wasn't sure about hospice care, if it meant removing Young's ventilator. "I'm not ready to make that kind of decision," she said, adding that other family members might want to visit him first.

But she was contemplating a DNR order. "Why resuscitate someone who loved life so much?" she wondered.

After listening to the audio recordings of the transplant team's meetings, she shook her head. "I know that what happened could've not been intentional, but at the very least, they could be honest," she said. "People should be able to make informed decisions for themselves and their loved one."

She wondered if her brother could possibly be brought home to his own apartment someday.

"I want him to have the wind in his hair and the sun on his face," she said. "I want him to be as comfortable as he can."

On a Tuesday at the end of August, I accompanied Andrea on her weekly visit to her brother. On the eighth floor, we had to stop outside his room to put on gowns and gloves — precautions against an infection that could kill him.

Darryl Young's eyes were open, drifting over the ceiling. They did not connect with Andrea as she leaned over the bed, greeting him.

"Hi Darryl, how are you today?"

Young's corner room overlooked the street. It was bare of any personal effects — no photographs or cards to give a clue about the man who had been in the hospital for nearly a year. Instead, he was surrounded by machines. On the right of the bed was a monitor to track his vital signs.

On the left was the ventilator used at night to help him breathe, and hanging near him, a bottle of nutrients and a bag of liquid for hydration.

Every inhalation was accompanied by a gurgling noise, perhaps caused by mucus in his tracheostomy tube. The only other sound in the room came from the TV over the bed, set on CNN, which was warning of a hurricane approaching Puerto Rico.

Young asked a passing nurse if the doctors were around, and she was told that Zucker and Letarte weren't on the floor. She asked if anyone could tell her how her brother's most recent procedure had gone.

The hospital staff had told her that they would drain his lungs because he had a bout of pneumonia, and she had asked if someone could call her afterward and update her, but nobody had. The nurse said he didn't know.

Young turned back to her brother. She pulled up a song on her phone: "Lean on Me," which had been their mother's favorite tune.

She held her phone close to his ear so he could hear the lyrics: "Lean on me, when you're not strong, and I'll be your friend, I'll help you carry on...."

With her other hand, she stroked his face and arm.

"It's OK," she murmured. "You can close your eyes if you're tired, you can sleep."

Around that time, Andrea Young sat down and wrote a short statement, expressing her feelings about her brother's treatment.

"These revelations are deeply disturbing," she wrote. "I will be forever grateful to those who had the courage to come forward, possibly putting themselves at risk, to expose this hospital's wrongdoing. It is my hope that the appropriate action will be taken against the hospital as well as the doctors involved for such a betrayal of trust and for inflicting such pain upon me, my family, and many other families as well."

As part of the Trump administration's deregulatory push, it is relaxing performance requirements for transplant programs. Under a rule that was finalized last month and will take effect in November, transplant programs won't have to submit data on outcomes to CMS to receive Medicare reimbursement.

However, SRTR will continue to report one-year survival rates, and CMS says it will still monitor quality of care and investigate complaints.

Three days before the anniversary of Young's transplant, Andrea Young was met at the hospital by a cardiologist and a social worker. They told her that Darryl was now stable enough to consider a move to a long-term care facility. The social worker offered to start looking up facilities. Andrea Young asked why, after all this time, they were planning to transfer him. She didn't get a clear response, she said.

On Sept. 21, one year after his operation, Darryl Young was still alive, and still at Newark Beth Israel. After so long in a vegetative state, the chances of a patient regaining the ability to communicate are "grim to none," said Dr. Joseph Safdieh, associate professor of neurology at Weill Cornell Medicine. But for the hospital, Young now counted as a victory.