Some patients and family members who came to the Houston hospital for liver and lung transplants have complained about the quality of care provided. A St. Luke's spokeswoman says the transplant programs still meet national benchmarks and argues against focusing on outcomes from a single calendar year.
This article first appeared November 30, 2018 on ProPublica.
By Mike Hixenbaugh and Charles Ornstein
During the summer of 2017, Baylor St. Luke's Medical Center posted a banner on its website, celebrating its liver and lung transplant programs as "#1 in Texas."
That declaration was based on the latest publicly available data, which showed stellar one-year survival rates for patients who received liver and lung transplants at St. Luke's between 2014 and the middle of 2016.
But soon after the hospital published those marketing materials in August 2017, both of those transplant programs began to see increases in patient deaths, an investigation by the Houston Chronicle and ProPublica has found.
Of 85 patients who received a liver transplant at St. Luke's in 2017, at least 15 have died within a year, up from previous years and worse than the national average. That's according to preliminary data provided to reporters by the Scientific Registry of Transplant Recipients, a Minnesota-based group that measures transplant outcomes on behalf of the federal government.
Also last year, according to data provided by the registry, at least seven of the hospital's 54 lung recipients died within a year of their transplants, double the mortality rate at the hospital during the previous two and a half years.
These figures do not include patients who received livers or lungs as part of multi-organ transplants or those receiving second transplants after having previously received new organs.
Both the lung and liver programs at St. Luke's have slowed down in 2018, with the number of transplants performed down 40 percent and 16 percent, respectively, through October, compared with the same period last year. Both programs also have had patients suffer unusual complications this year, according to a review of medical records and interviews with surviving family members.
In February, a patient's new lung flipped over inside her chest, an event so rare that experts sometimes document individual cases in medical journals. Another patient developed a serious tear in his airway following his December 2017 lung transplant and never recovered from the setback. And in July, a 36-year-old single mother undergoing a liver transplant died in the operating room, prompting friends to seek donations to pay for her funeral and care for the daughter she left behind.
These deaths came as St. Luke's was facing scrutiny for poor outcomes in its heart transplant program. In May, ProPublica and the Chronicle reported on an outsized number of deaths and complications in that program, which had prompted a couple of St. Luke's cardiologists to refer some patients elsewhere for transplants.
As was the case with the heart program, some patients and family members who came to St. Luke's for liver and lung transplants have complained to administrators or contacted reporters about the quality of care provided.
St. Luke's officials and doctors declined to be interviewed for this story. In a written statement, spokeswoman Marilyn Gerry pointed out that the hospital's liver and lung programs met national benchmarks in the latest official report from the transplant registry, released in October, which measured one-year survival for transplants performed between the start of 2015 and the middle of 2017.
Gerry said it was "misleading" to focus on a single year of data from 2017 rather than the entire two-and-a-half-year period examined by the registry.
"Because of the complex nature of organ transplant cases, natural fluctuations will occur" in a hospital's outcomes from one year to the next, Gerry wrote.
This year, when the Chronicle and ProPublica were reporting on below-average heart transplant outcomes at St. Luke's, hospital officials said something different. They discouraged focusing on the heart program's poor scores in official reports, saying they were based on "old data" and "don't reflect the current transplant outcomes at our institution."
In August, the Centers for Medicare and Medicaid Services terminated federal funding to the heart transplant program after concluding St. Luke's didn't do enough to correct problems that led to poor outcomes dating back to 2015. The hospital is appealing and has said that Medicare's decision has not affected its other transplant programs.
It's too soon to say whether the increase in liver and lung deaths in 2017 will cause those programs to slip below national standards in future registry reports or put them at risk of sanctions from Medicare. That will depend, in part, on how the programs perform in subsequent years, as well as any changes in the way the federal government regulates transplant programs.
Many factors can cause a transplant program's outcomes to dip, experts say, from patient selection to the quality of medical care offered in the months following a transplant. A one-year decline in outcomes may not put a program in jeopardy of falling significantly below national benchmarks, experts say, but it could if a hospital fails to correct the trend.
"Every transplant program has down years," said Alexander Aussi, a San Antonio-based transplant consultant. "But a good program recognizes those trends early, works to understand what is going wrong and then makes proactive changes before things get out of control."
St. Luke's leaders announced in October that they had hired a new executive to oversee all of the hospital's transplant programs and had recruited surgeons to help with heart and lung transplants.
The hospital also has launched a new marketing campaign in recent months celebrating patient success stories, in web vignettes and full-page newspaper ads, often emphasizing St. Luke's willingness to treat the most critically ill patients. One of those was Godfrey "G.W." Biscamp, a 64-year-old former test pilot from Houston who was turned away by two other local transplant programs before getting a new set of lungs at St. Luke's in July 2017.
"I was just about burned out with hospitals," Biscamp said in an interview. "When I went to Baylor, I was kind of expecting the same old song and dance. But those people saved my life."
Biscamp and another organ recipient featured in the ads told reporters they were pleased with the care provided by nurses and physicians throughout their stays at St. Luke's.
Marilyn Chambers, whose husband, John, died in April, more than three months after receiving a double-lung transplant at St. Luke's, tells a different story. She filed several complaints about the care provided to her husband and pressed hospital leaders to explain why he did not survive, leading to a pair of meetings with the hospital's president, Gay Nord.
Chambers said she wasn't satisfied.
"I felt in my soul," she said, "that they did something wrong."
Last year was momentous for the lung transplant program at St. Luke's, following two years of turnover in its surgeon ranks.
The senior surgeon who had led the lung program since 2012 left in the summer of 2015 to practice at a hospital affiliated with Harvard University. The surgeon hired to replace him stopped performing lung transplants soon after his arrival in early 2016, after some of his initial patients experienced complications. And the junior surgeon who stepped in left a few months later, also for a job at a Harvard teaching hospital.
Finally, in the spring of 2017, St. Luke's recruited a 41-year-old surgeon from Minnesota, Dr. Gabriel Loor, and the lung program quickly ramped up. The surge in transplants that year came after another nearby hospital, Houston Methodist, significantly scaled back its lung volume after too many transplants failed within a year.
In Loor's first four months alone, St. Luke's performed 30 lung transplants, nearly matching the hospital's total from all of 2016 and double the number performed in 2015. But soon the program hit a rough patch. At least two of the six patients who received new lungs at the hospital in May 2017 did not survive a year, according to data provided by the United Network for Organ Sharing and interviews with friends and family members.
One of the patients was Leonard "Johnny" Arsement, a former railroad switch operator who came to St. Luke's from Louisiana with pulmonary fibrosis. Days after his transplant, doctors told his family that the donor lungs were not working properly, and he never recovered. He died in December at age 72.
Daniel Butler, an artist from Houston, also received a double-lung transplant that May. The new lungs never seemed to work properly, said his best friend, Tim Johnson. After a series of setbacks early this year, Butler asked St. Luke's doctors to stop providing life-saving medical care, and he died a few days later. He was 62.
"It was just very mysterious to everybody why these lungs wouldn't take," Johnson said. He spoke highly of the doctors and nurses who cared for his friend during his eight-month hospital stay, despite the outcome.
More deaths followed later in the year, threatening to put a drag on the lung program's survival rate in future transplant registry reports. In the two-and-a-half-year period ending in December 2016, 94.2 percent of St. Luke's 58 lung transplant recipients survived one year, better than the hospital's expected rate of 89.7 percent, according to registry figures.
In 2017, though, during the surge in transplant volume, the program's one-year survival rate was down to 87 percent, a couple of percentage points below the national average. The transplant registry does not calculate expected rates for periods shorter than two-and-a-half years. The 2017 survival rate is current as of mid-November and could drop further if any additional lung recipients die in the final weeks of 2018, within one year of their transplants.
The liver transplant program at St. Luke's was in the midst of its own difficult stretch in 2017.
For several years, the liver program had posted outstanding results. Between 2014 and the middle of 2016, 93 percent of its patients survived at least a year, slightly better than the national average of 92 percent and its own expected rate of 91.3 percent.
But that began to shift at the end of 2016, according to an internal chart obtained by the Chronicle and ProPublica. The line graph, used by programs to track transplant outcomes in real time, appears to show the liver program on a steady path toward worse-than-expected outcomes by the end of last year.
All told, one out of every five liver transplants performed at St. Luke's in 2017 have failed within a year, about double the national rate. This includes two St. Luke's patients who had their new livers fail but who were still alive as of this month, likely after receiving another transplant.
Gerry, the St. Luke's spokeswoman, said the internal chart obtained by reporters represents "one piece of a confidential report provided to transplant programs by the [the transplant registry] for peer review and continuous improvement."
A day before Hurricane Harvey slammed into southeast Texas last year, Paul Guillory sat up in a hospital bed at Baylor St. Luke's, telling jokes.
Guillory, a 74-year-old retired barber from League City, was in a good mood, thinking about the months he had waited for a new liver after being diagnosed with cancer, and about the prospect of another decade of life to watch his grandkids grow. His wife, Barbara, scribbled a note in her day planner to document the moment when staff wheeled her husband into surgery on Aug. 24, 2017: "He was so happy," she wrote.
But in the operating room that afternoon, according to medical records, Paul suffered significant blood loss and required multiple transfusions — a complication likely triggered by his liver disease and his body's inability to form blood clots. By the time he'd been wheeled into a recovery room late that night, family members said doctors were expressing grave concerns about the viability of his new organ.
"Liver not performing as it should," Barbara wrote the next day in her pocket calendar, hours before Harvey made landfall. "Storm was coming in."
The hurricane came and went that weekend, but Paul never recovered, even after receiving a second, emergency liver transplant later that week.
Barbara said she wasn't surprised when she learned from a reporter that Paul was one of 15 St. Luke's patients who died following liver transplants last year. She and her family said they had concerns about the care he received.
Barbara signed a release allowing St. Luke's to speak to reporters about her husband's case; the hospital did not answer questions about his care.
Hours before Paul received his second liver transplant, about a week after the first one failed, Barbara and her children recalled watching in horror as he started to have a seizure in his hospital bed.
After several minutes, a doctor was summoned; he noted the "seizure like activity" in Paul's medical records and gave him drugs to bring the tremors under control. Two hours later, Paul was taken for his second liver transplant.
A day later, on Sept. 1, 2017, Barbara noted her husband's progress in her calendar: "Seizures have continued. Have tried many different medications, but they continue."
Barbara continued taking notes throughout Paul's month-long hospital stay, documenting his steady decline.
She sat next to her husband for several days, squeezing his hand and singing love songs, hoping to see a flicker. It never came, however, and she and her family together made the decision to let him go.
On Sept. 23, Barbara jotted one last note.
"I was able to lay with him and love on him," she wrote. "Was holding him when he took his last breath."
John Chambers was nervous when he got the call from St. Luke's three days after Christmas last year. The 56-year-old former FedEx deliveryman from south Houston knew he would eventually need a transplant after years spent struggling with an inflammatory lung disease, but he'd been breathing easier in recent months, and now he was having second thoughts.
Chambers reluctantly went ahead with the double-lung transplant that day, his wife said, fearing he wouldn't get another chance. But more than a month later, he still couldn't sit up or breath on his own.
"He was in worse shape than when he went in," said his wife, Marilyn.
Finally, in late January 2018, doctors said they identified a major cause of his continued struggles: A tear had formed in John's respiratory tract where the transplant surgeon had connected the donor lungs to his air passageway.
Such airway complications occur in between 5 percent and 10 percent of lung transplant patients, experts say, but rarely are they as severe as the "Grade 4 dehiscence" that had opened in John's respiratory tract.
Despite doctors' efforts to repair the airway, St. Luke's officials would later acknowledge that the complication triggered other serious problems — infections, pneumonia, inflammation, organ failure — that ultimately led to John's death in April.
Marilyn believes there were other factors. She repeatedly complained to hospital staff about the care provided to her husband. The concerns are documented in a series of letters between her and hospital administrators.
In one instance, a nurse used a harness to lift her husband out of bed, Marilyn said, and in the process tore open his surgical wound, soaking his gown in blood. Other times, she said, staff inadvertently jostled lines connecting her husband to life-support equipment or failed to follow doctor's instructions.
"It was one thing after another," Marilyn said. "I couldn't believe the way they treated him at that hospital."
In the written statement, Gerry, the hospital spokeswoman, noted that St. Luke's has maintained "magnet" status in nursing care for two decades, signaling that the hospital meets quality standards laid out by the American Nurses Credentialing Center.
"We have full confidence in our nursing professionals in the care they provided to the patients you highlighted and are aware of the patient concerns you relayed," Gerry wrote, referring to the care provided to all of the patients included in this story. "We reviewed and responded to families' questions and comments, and immediately followed up as necessary."
In August, three months after John's death, Marilyn met with Nord, the hospital's president, along with Loor and others, to address her complaints. Chambers recorded the conversation and provided reporters with a copy of the audio.
During the meeting, Nord acknowledged that her hospital staff could have done a better job and said the hospital had educated staff based on some of her complaints.
Loor assured Marilyn that he and his team had done everything they could for John and that they were heartbroken with the outcome. Although it was another surgeon who performed John's lung transplant, Loor said he was confident that it was done correctly. He said that the tear in John's airway was likely the result of a common complication known as "graft dysfunction," in which a set of donor lungs goes into shock after being implanted in a patient.
Loor explained that he had hoped that John was going to recover from that setback, but the infections and other problems eventually became too much.
"Ms. Chambers, I'm really sorry about all of this," Loor said during the July meeting. "And I know it's got to be really hard for you, but I know that you're strong, and I know that he [John] is with us. I feel him with us. And we get better and I get better, we all get better from talking about these things and learning from these things. … We're going to take this to heart."
In early February, three days after doctors discovered the tear in Chambers' airway, Edmund Flores sat in a waiting room, praying for his wife while she underwent a double-lung transplant. Patsy Flores, a 58-year-old mother of two adult children, had spent more than a year struggling to catch her breath as result of high blood pressure in her lungs and a devastating autoimmune disease.
It became clear a day after her transplant that something was wrong.
When Loor and another surgeon reopened Patsy's chest two days after the transplant, they made a tragic discovery, her medical records show: One of the new lungs had inexplicably flipped over, pinching arteries and choking off blood flow to the organ. The complication, known as lung torsion, is so rare after lung transplants that only 12 cases had been publicly documented as of two years ago.
Researchers who examined each reported case concluded that the deadly complication can be mitigated in some instances if detected right away and corrected. But by the time St. Luke's doctors flipped Patsy's left lung back over, much of the organ had essentially died, according to her medical records.
In a statement, hospital spokeswoman Gerry wrote that initial X-rays following Patsy's surgery did not indicate any twisting of the lung. "Additionally," she wrote, "all of our standard intraoperative monitoring procedures confirmed correct alignment and orientation. … However, continued monitoring over the next 24 hours detected a misalignment in one of her lungs and a procedure was completed to address the alignment."
In an effort to save her, Loor removed the damaged lung and doctors put Patsy back on the transplant waiting list, in urgent need of a replacement. Within days, they accepted another lung for her and implanted it.
But it was not enough. Patsy spent nearly four months connected to life support, her medical records show. Her kidneys failed. She suffered repeated infections and bedsores.
Edmund also complained to hospital staff about his wife's care. A chaplain recorded some of the complaints in Patsy's medical records. Edmund said there were not enough nurses on staff overnight and on the weekends, leaving his wife to sometimes wait too long for assistance.
A few weeks after his wife's surgery, a nurse ripped open Patsy's surgical wound while attempting to lift her out of bed, Edmund said, the first of two times that happened: "From that point forward," he said, "it was taking that much longer to heal."
Patsy smiled in photos as her family gathered around her hospital bed to celebrate her 59th birthday in April. But physically, she continued to decline. She lost weight. Her organs shut down. Infections spread through her body. And finally, on June 1, she aspirated vomit into her lungs and died two days later.
A month later, Edmund sat looking through photos of his wife at their home in Channelview, a blue-collar town east of Houston.
"Woo boy, she was something else," Edmund said, fighting back tears. "She was a beautiful woman. Strong, vibrant, full of life."
Edmund said that he understands Patsy was critically ill, and that she wouldn't have survived much longer without a transplant. But he's struggling to come to terms with the rare complication that caused her first transplant to fail, and with what he felt were lapses in care from seemingly overworked nurses and other medical staff in the months that followed.
"The nurses were doing a fantastic job," he said. "But there was only so much they could do because they were stretched so thin."
Since Patsy's death, Edmund has received two anonymous letters in the mail. He suspects they were from someone who was involved in his wife's care, or another hospital employee.
The first note alleged that there were problems with Patsy's transplant and claimed that her death "should have been avoided!!!" The second mentioned other lung transplant deaths this year and encouraged him to contact a Chronicle reporter.
"I need you to know that the lung twist was avoidable," the letter read, "and the whole team feels so so bad for you and your family."
Flores doesn't know what to make of the notes.
For now, he has filed them away with other records documenting his wife's stay at St. Luke's.
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