Series: Patient Safety Exploring Quality of Care in the U.S.

Over the course of her lifetime, Paula Schulte survived painful scoliosis that contorted her spine, a head injury that left her in a coma for weeks, and cancer that cost her part of a lung.

What she couldn’t survive was 11 weeks in Florida hospitals.

Schulte, 64, was living an engaged life — staying in touch daily with her daughter, Stephanie Sinclair, a photojournalist, and taking afternoon drives with her husband, Joe. When she suffered an unexpected bout of seizures in August 2012, doctors said she would need only a short hospital stay until the drugs kicked in to remedy things.

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Instead, her treatment triggered a cascade of medical mistakes.

A fall from bed broke her hip and wrist — injuries that went undiagnosed for days. A hip replacement became infected, requiring another surgery. A displaced IV pumped a caustic drug into her arm until it ballooned to the size of a melon.

Schulte died as a rare syndrome, thought to be triggered by a reaction to medication, blistered her eyelids and attacked her internal organs. Doctors said it was the type of condition they had only read about in textbooks.

A close examination of Schulte’s care shows that for all the errors contributing to her decline, neither physicians nor hospitals were held accountable for any of them. Little was done to protect other patients from similar mistakes.

Strikingly, those involved with her treatment were unaware of the totality of the missteps that contributed to her death.

“There was no justice for my mother,” Sinclair said. “There was no consequence for any of this poor care on anybody’s part. I know that added to my father’s trauma, and I know that it added to mine.”

Schulte’s case illuminates how the health care system not only fails to protect patients but often compounds the harm by hiding the truth when patients or family members try to find out what went wrong.

Over the past three years, ProPublica has gathered the stories of more than 1,000 people from all 50 states who answered a detailed questionnaire about how they or a loved one was injured during medical care, including how the providers and regulators dealt with them after an error.

Only 1 in 5 respondents said a provider or medical facility disclosed that harm had occurred — and in about half the cases, disclosure came only after pressure, such as a lawsuit or complaint. Getting an apology for a mistake or injury was even more rare: Just 1 in 8 reported receiving one.

Although ProPublica’s sample is not a statistical cross-section of the nation’s patients (participants are self-selected), the responses are consistent with what some experts call a gaping hole in U.S. health care. Again and again, patients say they are ignored or dismissed by providers who seem more interested in avoiding legal liability than in acknowledging what went wrong.

A recent study estimated that preventable harm in hospitals contributes to the deaths of between 210,000 and 440,000 patients each year. That would make medical injury the nation’s third-leading cause of death, just behind heart disease and cancer.

More than a decade ago, a landmark study by the Institutes of Medicine — “To Err Is Human” — called for a national registry to track medical harm and bring greater accountability.

That hasn’t happened. Instead, it has been largely left to individual hospitals and practitioners to address and learn from incidents of patient harm.

Only 10 states require hospitals to disclose medical mistakes or unintended outcomes to patients. More than two-thirds of states have laws granting legal immunity for apologies by providers. But apologies aren’t required, and the laws on immunity often do not shield doctors from liability if they explain what went wrong.

Dr. Eric Thomas, a patient-safety expert from the University of Texas Medical School at Houston, said ProPublica’s questionnaire reflects a troubling reality that helps perpetuate harm. It is “unacceptable that such a small percentage of people are being told” about errors, Thomas argued, but doubly so because every undisclosed error is a lost chance to improve care.

“Not only is it a matter of justice and professionalism,” he said, “but it is a matter of improving safety for future patients.”

Stephanie Sinclair and her mother, Paula Schulte. (Courtesy of the Schulte family)

A few hospitals have tried to break through barriers to disclosure with programs that invite patients and their lawyers to talk about errors and possible compensation before disputes escalate. Rick Boothman, who has instituted a more open approach as chief risk officer at the University of Michigan Health System, said the fear of lawsuits or professional discipline still remains a formidable obstacle.

“People can nod in agreement with the ethics of this,” he said. “And then a defense lawyer who gets paid by the hour will say, ‘Boothman is crazy. This will lead to catastrophe.’ That holds the well-meaning hospitals back.”

In fact, data from Michigan and other similar programs show that taking responsibility for patient harm reduces lawsuits, Thomas said. “One of the main reasons that people sue,” he said, “is that they’re trying to find out what happened.”

In lieu of the courts, patients or their relatives can complain about poor care to an array of entities, from state regulatory agencies to The Joint Commission, the private, nonprofit organization that accredits most hospitals.

Schulte’s family turned to state regulators. They declined to investigate, saying the alleged errors didn’t pose an urgent threat to other patients. After Sinclair wrote to the Joint Commission, the group cleared the hospitals involved but said it couldn’t divulge any details.

“All anybody cared about was covering up for themselves,’’ Sinclair said.

Part I

On the morning of Aug. 12, 2012, Joe Schulte’s phone rang as he prepared to visit his wife at the hospital. The call delivered jarring news. Somehow, Paula Schulte had fallen out of her bed in the ICU. Staffers found her crumpled on the floor.

Joe rushed to Lawnwood Regional Medical Center, a 331-bed facility in Fort Pierce, just a few minutes from the couple’s house. He filled in Sinclair, who was on assignment photographing child brides in Ethiopia.

Over the years, the family had seen Paula through multiple hospital stays. Joe met Paula in the late 1970s, when he was a successful real estate broker with a house in a hip section of South Miami. Paula was artistic, funny and spontaneous. They married 18 months later, and Paula moved with her daughter, Stephanie, then 5, into Joe’s place.

Severe scoliosis had left Paula with metal rods in her spine. She experienced constant pain and felt insecure about growing up with a crooked back. When Stephanie was a small child, she recalled, her mom spent a year in a body cast after spinal surgery.

One night in 2001, while the rest of the family slept, Paula went to the kitchen, fell and slammed her head. Doctors had to perform brain surgery and medically induce a coma for two weeks. Staples closed 6-inch-long incisions on each side of Paula’s head.

The morning she was to awake, doctors warned that Paula might not be the same, perhaps even barely functional. Stephanie and Joe watched nervously as attendants removed her breathing tube. Would she even know them?

Paula looked around and smiled mischievously. “Well, this is a bitch,” she said to peals of laughter.

Paula Schulte and husband Joe Schulte taken in 2005 in Fort Pierce, Florida. (Courtesy of the Schulte family)

“Yep,” Stephanie said to Joe. “That’s her.”

In time, though, they did notice differences. Paula occasionally had trouble with vocabulary or thinking beyond the moment. Her talent for art, however — she had studied for years on a scholarship to the University of Miami — was undiminished. She continued to produce paintings of South Florida landscapes and other subjects in the vivid colors she favored.

When Schulte was admitted to Lawnwood that August, it was for a relatively minor problem — seizures that began after a doctor took her off the medication she’d been taking since the kitchen accident. The seizures left her disoriented and unable to speak. New medications were supposed to get her out of the hospital soon.

Joe rose each morning, made coffee and breakfast, then headed to Lawnwood for a 10-hour shift by his wife’s bedside. Mostly they watched Paula’s favorite TV shows while waiting for the medication to kick in.

With every shift change, Joe briefed the new nurses on the intricacies of his wife’s care. A private nurse Sinclair had hired to coordinate her mother’s care also checked in periodically.

It was on the fourth day that Joe got the call about her fall in the ICU. Falls are a common, preventable cause of injury to patients; Medicare now refuses to pay hospitals for additional treatment required when patients suffer serious falls in their care. Hospitals have become so attentive to fall prevention that employees sometimes sit with patients around the clock.

Still, about 1 million falls occur each year in hospitals, with about 11,000 of them contributing to the patient’s death.

Lawnwood doctors and nurses knew Paula was a fall risk because she was disoriented and her gait was unsteady. They noted the risk on her armband, her chart and the door of her room. To keep her safe, a bed alarm was ordered and bed rails were supposed to be raised.

Still, the bed alarm could be a nuisance, so it was often turned off, Joe recalled. The raised rails made it harder to tend to Paula, and at times they were lowered. Joe said the rails were down the night before the fall; he’d reminded a nurse to put them up.

After the fall, hospital staffers said Paula would be fine. She had fallen on her right side and had discoloration and abrasions on her right arm, which seemed to be hurting. A scan of her head and X-rays of her right shoulder and upper arm were ordered. Paula wasn’t fully able to speak, but when the staff said there were no major injuries, Joe and Stephanie felt reassured.

The voices of patient harm More than 1 million patients suffer harm each year in U.S. health care facilities. Often, their harm isn’t acknowledged even as they live with the consequences. ProPublica set out to capture their stories. Here is what we learned.

Four days later, Paula was discharged to a nursing home, Emerald Health Care. By then she was able to communicate better. Nursing home records show that her right wrist was swollen and that she complained of pain. Joe noticed that her right foot twisted to the side.

Doctors ordered more X-rays and made a sickening realization: All this time, Schulte’s right hip and right wrist had been broken. Both would require surgery — an artificial hip and a metal plate and screws to repair her wrist.

Schulte’s primary care doctor tried to find out where the injuries had occurred. Nurses at Emerald told him Schulte hadn’t fallen at their facility and had arrived from Lawnwood with the fractures, he wrote in her medical records. The broken bones may have been missed because of Schulte’s inability to clearly communicate the source of her pain, he added.

Nurses’ notes from Lawnwood suggest the hospital may have missed clues. Schulte was “having pain with moving and turning,” and showed “generalized weakness” in her right leg, they say. She “became agitated” and “refused to complete” her range of motion exercises.

Rehabilitation notes say she needed help standing up and wasn’t able to step to the side.

When Sinclair heard about her mom’s hip, she immediately understood the situation was grave; many studies show that older people who break a hip have a significantly higher risk of dying.

Sinclair, then on a photo assignment in Ethiopia, sat in a restaurant and sobbed. She cut her work short and flew home.

Schulte’s family couldn’t imagine sending her back to Lawnwood after the fall. So they turned to St. Lucie Medical Center, a 229-bed facility nearby. She was admitted through the emergency room and assigned an orthopedic surgeon, Dr. Gerald Shute.

Shute declined to be interviewed or answer written questions about Schulte’s care. As with most surgeons, there is little public information about how his patients fare. ProPublica’s Surgeon Scorecard recently published complication rates and surgical volume for nearly 17,000 doctors who operated on Medicare patients. Shute’s volume of Medicare hip replacements is low.

On Aug. 24, 2012, the day before Schulte turned 65, Shute replaced her hip and affixed the plate in her broken wrist. She returned to Emerald Health Care five days later for physical therapy. Schulte was heavily medicated and at times agitated, according to nurses’ notes and Dr. Mark Pamer, who treated her at Emerald and provided a summary of her care to ProPublica.

Caregivers eventually noted swelling and yellow drainage from her hip incision, nurses’ notes from Emerald state. Eighteen days after he’d operated, Shute diagnosed two infections in the hip joint. Schulte returned to St. Lucie Medical Center, where Shute opened the wound, washed out the infection and deposited antibiotic beads.

Joe Schulte and Sinclair said they were told that infections “sometimes happen” — as if they are the product of random chance — a common explanation given to patients in such circumstances.

It’s true that infections are a frequent complication: The Centers for Disease Control and Prevention estimate that more than 700,000 patients a year get infections while hospitalized. Of those, about 75,000 die. Though it’s hard to pinpoint how infections are acquired, studies demonstrate that they can be prevented. The CDC, for instance, said increased vigilance led to a 19-percent drop in surgical-site infections for some procedures from 2008 through 2013.

As part of an extensive analysis of surgical complications published in July, Surgeon Scorecard reported that high-performing surgeons were able to operate on hundreds of patients with few or no infections.

To fight off Schulte’s infections, a port was installed in her chest to inject potent antibiotics. One of the drugs she was given, cefepime, can cause nonconvulsive seizures, which lack the violent irregular movements of a typical seizure but can do just as much damage to the brain.

The FDA had issued a warning that year about cefepime, saying it had caused seizures in some patients. Sinclair and Joe Schulte said they were not told about the risk.

Paula Schulte’s Final Months Aug. 8, 2012: Paula Schulte is admitted to Lawnwood Regional Medical Center for a short-term stay to treat seizures. Aug. 12: In the early morning, Schulte is found on the floor of the ICU after falling from bed. X-rays later show her hip and wrist were broken. Aug. 24: Schulte has wrist surgery and a hip-replacement at St. Lucie Medical Center. Sept. 12: After infections were found in her hip, Schulte has surgery to clean out the joint and introduce antibiotic beads. Sept. 19 – Oct. 17: Recovering at a nursing home, Schulte struggles with disorientation. Her mental status dramatically declines. She is sent back to St. Lucie Medical Center. Oct. 18: An IV pumps toxic medicine into her forearm, leaving it blackened and swollen. Doctors slice it open to drain 1 liter of fluid. Oct. 25: With Schulte suffering from the arm injury, infections and a rare drug reaction that blistered her skin, her family chooses to remove life support. Feb. 26, 2013: Lawnwood Regional writes to Schulte’s daughter, Stephanie Sinclair, confirming the fall from bed but saying there was no evidence of hip and wrist fractures. Oct. 6, 2015: The Joint Commission tells Sinclair it contacted Lawnwood and St. Lucie hospitals about Schulte’s care and “determined their response is acceptable.” No details were provided. Oct. 22, 2015: Florida state officials decline to investigate Schulte’s case, referring Sinclair to The Joint Commission.

For a third time, Paula Schulte found herself in a bed at Emerald Health Care. Sinclair said her mom was angry about the fall and infections and said every day that she just wanted to go home. While Sinclair returned to New York City, Joe spent his days with Paula, trying to cheer her up. The couple watched shows on Animal Planet.

Once again, her recovery didn’t go as expected. Nursing staff documented that Paula’s behavior became more erratic, that she had trouble expressing herself, acted confused and was hostile toward them and toward Joe, even when he tried to help her with physical therapy.

It became clear that something wasn’t right. Sinclair called Joe and heard her mother screaming in the background. Sometimes she would shout the same word over and over again, like “Hello! Hello! Hello!” or “Curtains! Curtains! Curtains!”

Pamer believed Schulte was delirious and prescribed two antipsychotic medications: Haldol, a potent drug sometimes used to sedate disruptive patients, and Zyprexa. The next day, though, a psychiatrist took her off the antipsychotics.

Pamer said Schulte’s symptoms were characteristic of several possible conditions, including delirium, brain disease or nonconvulsive seizures. Given the information at the time, he told ProPublica, there was no way to be sure about the cause. Pamer decided Schulte’s neurological condition was severe enough to send her back to the hospital.

When her ambulance arrived at St. Lucie Medical Center, records say she was disoriented, confused and agitated. Doctors admitted her with a diagnosis of “altered mental status.” Sinclair assumed her mother would go into intensive care and quickly see a neurologist. Instead, Paula’s room wasn’t in the ICU and was far from the nursing station.

That first night in the hospital, to correct low potassium levels, a nurse administered potassium chloride through an intravenous line in Schulte’s left arm.

Guidelines by the National Institutes of Health call for “extreme care” when giving potassium chloride. If the IV misses a vein or is dislodged and the drug infiltrates the arm, it can cause a chemical burn, killing tissue and causing the skin to peel away. Should an infiltration occur, the IV should be “discontinued at once,” the guidelines say.

At 4:30 a.m., a nurse noted in Paula’s record: “enlarging L FA infiltrate” — an infiltration in her left forearm. The charge nurse was called to the room, and a doctor was notified. “Will continue to monitor,” the nurse wrote. Medical records indicate the IV wasn’t pulled for 90 more minutes.

When Joe and Stephanie arrived in the morning, they were horrified. Paula was catatonic, eyes staring straight ahead. Her left arm was three times its normal size, blackened and taut like a balloon about to burst. Fluid seeped through the pores of her skin, which had partially detached from her hand in what doctors call “degloving.”

Staffers said the injury wasn’t a big deal; it happens sometimes and was treatable, Sinclair recalled being told.

Then the specialists took a look. Excess fluid had made pressure build up in Paula’s arm, choking off blood flow. They diagnosed compartment syndrome, a condition that can require amputation. Doctors did not go that far, but that evening, in the operating room, a surgeon carved long incisions in her arm down to the bone. Doctors drained a liter of fluid from the limb.

Caregivers and hospital officials didn’t offer an explanation for the injury, Sinclair and her stepfather said, and no one said it was the result of an error or a mistake. Sinclair said they called it an “unfortunate situation” and said the hospital would not bill Medicare for the treatment.

Paula lay unresponsive. In the chaos around the IV infiltration, the original reason she’d been admitted — her neurological symptoms — became secondary. Two days after being admitted, she still hadn’t seen a neurologist. Furious, Sinclair demanded that the hospital call one in.

She and Joe were present when the neurologist finally arrived. Paula’s eyes were open. The doctor moved his finger in front of her face. Nothing. He gave her several firm pinches with his fingers. She didn’t resist.

In consultation notes, the neurologist said it was “probable” Schulte had been experiencing nonconvulsive seizures. Treatment guidelines say such seizures must be addressed rapidly because they can quickly damage the brain and increase the risk of death. The neurologist prescribed an additional anti-seizure drug and said Paula needed to be closely watched, his notes state.

Sinclair blew up. She’d been asking for a neurologist for days. She stormed through the hospital, demanding a transfer. With the proper care, she believed Paula could come through. “She had survived so many things before,” Sinclair said. “We thought she could do it again.”

A helicopter ferried Paula to the University of Florida Health Shands Hospital, in Gainesville. Sinclair and Joe drove more than four hours to meet her. An infectious-disease specialist examined Paula, still unresponsive, and wrote in the medical record that her seizures likely were caused by the cefepime used to fight her hip infections. She was taken off the drug and given a new one.

About a day later, though, Joe noticed something curious: skin appeared to be peeling off Paula’s eyelids. He alerted doctors, who found patches on her back, too. The ominous symptoms were confirmed when a pathologist said Paula had a rare condition, Stevens-Johnson syndrome.

The ailment, nearly always caused by an unpredictable reaction to medication, starts with patches of blistered skin and can end with organ failure and death.

Paula had suffered seizures, a fall that resulted in undiagnosed hip and wrist fractures, two hospital-acquired infections and an IV infiltration that required her left arm to be slit open like a gutted fish. But nothing could have prepared her loved ones for what happened next.

The skin in Paula’s ears and mouth fell away. Her eyeballs became raw. Inside, doctors said, her organs were under attack.

Sinclair and Joe took stock of Paula’s suffering. They decided to let her go. At their instruction, doctors unplugged Paula from life-support. Twenty seven minutes later, she was dead.

“She squeezed my hand right before she died,” Sinclair said. “She knew what was happening.”

“Everybody’s mom is great, but my mom was a gentle soul. To die such a violent death is what hurts my dad and I so much,” she said. “We knew my mom was sick, but never in our wildest dreams did we think she would die like that.”

Part II

Charles Bosk, a sociologist at the University of Pennsylvania, has spent decades studying the way caregivers and health systems react when patients get hurt.

“When bad outcomes happen,” Bosk said, “patients first want an apology, second an explanation, and third reassurance that the hospital is taking steps to make sure no one is harmed in the same way again.”

Schulte’s loved ones say they never got a formal apology or explanation.

For weeks after Paula died, they were crippled by grief. They replayed Paula’s last two months, obsessed by the tumble of events.

They were about to confront a common scenario for patients and family members trying to come to grips with medical injuries. Bosk called it the “many hands” problem. With numerous doctors and nurses at different facilities involved in an episode of care, there is no overall responsibility.

The predicament is compounded by a prevailing ethic in health care: that patient safety is best served by a “no blame” environment. Harm is attributed to “system failures” rather than individuals. It’s as if medical providers don’t see themselves as part of the system, Bosk said.

At first, Sinclair thought an attorney could help. She assumed filing a malpractice lawsuit would be a simple matter. Despite what she regarded as the dramatic and well-documented nature of her mother’s injuries, the lawyers she contacted weren’t interested.

Malpractice cases can cost $50,000 or more to pursue. Attorneys usually take them on contingency, meaning they are paid if they win. The economics work only if potential damages are high, so a patient’s medical bills and lost future income can be more important than the merits of the case.

Sinclair met with an attorney who walked her through the math. Paula was older and didn’t have much income. “The most we could get is $50,000,” she recalls the attorney saying, “and we could spend that much on depositions and expert witnesses.”

Paula’s case also was complex, involving multiple facilities and many providers. More potential defendants could mean more expense. “We wish we could help everybody,” one lawyer wrote, declining the case. “Currently, we have no choice but to reject about 300 potential cases presented to us for every one case we can accept.”

Sinclair couldn’t believe it. “If you’re 65 years old and not bringing in a big income, they don’t value your life,” she said.

The malpractice door was shut. But Sinclair had obtained her mother’s medical records, a stack about 10 inches tall. She knew they held critical details and believed that if she could only convey the facts to the hospitals, they would see how errors had contributed to Paula’s death.

Early on, going through the records was just too hard. Sinclair was often forced to stop at details that were too painful or intimate. Eventually, she made slow progress. Her husband, Bryan, then in law school, helped her make a detailed timeline, listing events during Paula’s care down to the minute.

Not until February 2013, four months after her mother died, did Sinclair muster the courage to call Lawnwood Regional. The fall in the ICU had been the first domino to topple. She suspected that hospital officials might not know that it started Paula’s decline, or how things ended.

The hospital routed Sinclair to the risk management department. Patients who are harmed rarely meet anyone in risk management, but that department usually knows about them. Cases are often flagged for review before a patient is ever aware of it.

The traditional role of risk managers is to protect hospitals from lawsuits. In cases involving medical errors, they move to gather information and control what is disclosed. Critics call this approach “deny and defend”: Avoid acknowledging a mistake while aggressively protecting the institution.

When Sinclair called Lawnwood, she spoke to a person in the risk management department about Paula’s fall from bed and the undiagnosed hip and wrist fractures. To be explicit about the problems, she read directly from the medical records: that Lawnwood knew her mother was a fall risk, that she was unable to communicate clearly, that no one X-rayed the hip, and more.

Lawnwood Regional Medical Center in Fort Pierce, Florida. Paula Schulte fell from her bed while in the hospital's ICU. (Courtesy of the Stephanie Sinclair)

A few weeks later, a letter from the interim risk manager arrived. It confirmed Paula’s fall but said an X-ray of her right arm “was negative for fracture” – with no mention that her right wrist hadn’t been X-rayed, as the medical records obtained by Sinclair indicate. The letter acknowledged that Paula’s hip wasn’t X-rayed but said, “There were no complaints of hip pain.”

“We are deeply sorry for the loss of your mother,” it continued. “We continue to strive to provide patient centered care and apologize if you feel our staff did not meet this goal.”

Sinclair wrote back, saying the hospital’s response left out key information. For one, her mother was speaking gibberish, so she couldn’t have complained about the broken hip. Precautions were supposed to prevent a fall in the first place, she wrote. Lawnwood’s response “answered none of our questions regarding the circumstances surrounding my mother’s care,” Sinclair said.

She added that her mother ended up dying after complications from the hip fracture, which “should give Lawnwood pause to perhaps handle such a request with compassion.” How would Lawnwood correct “this egregious and devastating wrong” and protect other families?

She never heard back.

In fact, subsequent incidents at Lawnwood suggest Sinclair was right to be worried about whether the hospital learned anything from Paula Schulte’s case. In late 2012, after Schulte died, another elderly patient fell in the hospital and suffered a hip fracture, Florida data shows.

As recently as March of this year, state inspectors cited Lawnwood after another patient fell and suffered a fracture. “There is no evidence the facility implemented measures developed to reduce re-occurrence or minimize risk of injury,” the inspectors’ statement of deficiencies said.

Officials at Lawnwood and St. Lucie Medical Center, both owned by Hospital Corporation of America, declined ProPublica’s interview requests. In an email, HCA spokeswoman Ronda Wilburn said Paula was “assessed and treated appropriately” at Lawnwood.

Wilburn said St. Lucie Medical Center had apologized for the “unfortunate IV incident” and had changed procedures after an internal review. She declined to specify what changes were made. Wilburn said the hip infections were diagnosed “several weeks” after Schulte left St. Lucie.

Sinclair considered the letter from Lawnwood’s risk manager a non-response. She felt gut-punched — too disheartened even to try asking questions about infections and the IV infiltration at St. Lucie, which she knew was run by the same corporation as Lawnwood.

Hospitals have broad leeway when it comes to deciding what to tell patients about medical errors. State laws aimed at encouraging disclosure are ambiguous or weak; hospital industry guidelines, though nominally promoting transparency, don’t require a detailed explanation.

Only 10 states require hospitals to tell patients about certain types of medical harm. None requires divulging how the harm happened, who was responsible or what steps hospitals are taking to make sure the harm doesn’t happen again. A national disclosure law, proposed by then-Sens. Barack Obama and Hillary Clinton in 2005 and modeled on the University of Michigan Health System’s program, never advanced out of committee.

The Joint Commission, the nation’s largest hospital accrediting agency, requires hospitals to inform patients about “sentinel events” — any injury that’s not related to the natural course of a patient’s illness that results in death, permanent harm or severe temporary harm.

Hospitals are also expected to conduct a “root cause analysis,” to reconstruct the event and determine how and why the harm occurred. But the hospital can “define and determine what information related to an adverse event or sentinel event should be disclosed … including whether the root cause should be disclosed,” a commission spokeswoman said in an email.

The American Hospital Association has guidelines that encourage open communication with patients, but they aren’t binding, either. Dr. John Combs, the AHA’s chief medical officer, would not comment specifically about Schulte’s case. However, he said that deflecting complaints from a family member would be out of step with today’s risk management standards.

Some hospitals are experimenting with new approaches.

Dr. David Mayer, vice president of quality and safety at MedStar Health, a Maryland-based hospital chain, is among a handful of federal grant recipients testing a program called Communications and Optimal Resolution — or CandOR — that “teaches people to be empathetic, and then, when apology is appropriate we take accountability,” he said.

“It’s not, ‘I’m sorry this happened to you,’ ” Mayer said, “It’s, ‘I’m sorry our care broke down and you were harmed by that care.’ ”

CandOR dictates that caregivers communicate immediately with patients after a bad outcome, even if it’s unclear why the harm occurred, or who was to blame. That contrasts with the more typical response in hospitals: to avoid talking to patients until any internal investigation is over, Mayer said. That can leave patients in the dark for months; if negligence isn’t determined, there may not be any communication with the patient, he said.

As in the Michigan health system’s program, financial compensation may be offered, or an explanation provided if no offer is made. Patients and their families are welcome to bring a lawyer to conversations with doctors or hospital officials, Mayer said.

Most hospitals still do things the old way; only about 100 of the country’s roughly 3,500 acute-care hospitals are trying approaches like CandOR, Mayer said.

After her mother’s funeral, when Sinclair saw the final death certificate, it set off a new round of frustrations and questions.

The document mentioned nothing about the fall that broke Schulte’s hip, the hospital-acquired injuries, missed diagnoses or infections. Though it listed several contributing factors, including Stevens-Johnson Syndrome, the certificate said the cause of death was epilepsy.

Yet Schulte’s discharge records from the Shands hospital showed — and doctors had asserted — that the seizures were resolved before she died.

Sinclair wrote the doctor at Shands who had completed the certificate. She asked to have it corrected to at least include the fall and the infections. “We just believe, out of respect for her, it should be accurate as to what actually transpired,” Sinclair wrote.

The accuracy of Schulte’s death certificate had a practical consequence. Schulte had life insurance that only paid out if her death were accidental — it was worth $100,000. Because the death certificate said she died of “natural” causes, Joe, who’d lost money in the 2008 financial crisis, didn’t have a claim.

There are numerous places where patients or their relatives can take such concerns, from state health agencies or nursing and medical professional boards to Medicare Quality Improvement Organizations. The Joint Commission also investigates complaints involving hospitals it accredits. Each agency has its own policies and jurisdictional limits.

About half of those who completed ProPublica’s questionnaire said they filed some sort of complaint. Many said they were disappointed with the outcomes, however. Some never heard back, while others reported getting generic responses asserting that the care was appropriate.

Sinclair didn’t fully understand, and struggled to navigate, the regulatory maze. Beset by grief, she didn’t file a complaint with the Florida Agency for Health Care Administration, which licenses hospitals, until June — more than two years after her mother died.

She took hours to prepare a three-page, single-spaced statement, including precise times and dates and quotes from the medical records. “As you can see, this is a very tragic series of events — rife with hospital error — resulting in devastating consequences for our family,” Sinclair wrote.

The next day, the agency sent a form letter. “Thank you for forwarding your concerns …” the letter began. While the agency “carefully reviewed” Sinclair’s complaint, it considers “current risks” to patients a higher priority, the letter said.

The agency would not be looking into the case.

About the same time, Sinclair sent letters about Lawnwood Regional and St. Lucie Medical Center to the Joint Commission. In October, four months later, two form letters arrived. They said the commission had contacted the hospitals and asked for responses concerning Paula Schulte’s care. The hospitals’ responses were found to be “acceptable,” the letters said.

“In line with our Public Information Policy, we cannot provide you with the organization’s response,” the form letters said. “This concludes our evaluation.”

Sinclair was outraged. How can the people most closely affected by the harm be entirely shut out of the conversation, she wondered.

Sinclair knew her mother wouldn’t live forever, but even photographing war and human rights abuses hadn’t prepared her for what happened in the end. The apathy she felt from medical providers and regulators only added insult to her mother’s many injuries, Sinclair said.

“We kissed her a million times in the last half hour of her life and surrounded her with love, but we could not protect her,” Sinclair said. “And who knew that the entity we were trying to protect her from was the health care system?”