This story has been updated.

“Your husband is dead,” the doctor told Linda Carswell.

This was not supposed to happen. Jerry Carswell had been admitted to Christus St. Catherine Hospital in Katy, Texas, with kidney stones. The previous night, he’d been walking around his room, talking about basketball and the upcoming presidential election with his son, Jordan. The plan was for the 61-year-old to be discharged that morning.

Instead, at about 5 a.m., a phlebotomist entered Jerry’s room to draw blood and found him lying across the bottom of his bed, not breathing, mottled and blue, without a pulse. Staffers performed CPR for 25 minutes to no avail. Carswell was pronounced dead at 5:30 a.m. on Jan. 22, 2004.

Upon learning the news, Linda and Jordan Carswell rushed to Jerry’s bedside. Lying there, sheets and blankets folded halfway up his chest, he looked as if he could be dozing, except for the tubes running out of his mouth — remnants of the failed resuscitation effort. Linda shrieked and grabbed her husband’s cold hands, trying in vain to stir him.

The on-call doctor suggested that the Carswells authorize an autopsy, launching the family on a traumatic journey that still isn’t over.

Clinical autopsies, once commonplace in American hospitals, have become an increasing rarity and are conducted in just 5 percent of hospital deaths. Grief-stricken families like the Carswells desperately want the answers that an autopsy can provide. But they often do not know their rights in dealing with either coroners or medical examiners, who investigate unnatural deaths, or health-care providers, who delve into natural ones.

For the last year, ProPublica, PBS “Frontline” and NPR have examined flaws in the U.S. system of death investigation, finding that mistakes in America’s morgues have sometimes helped convict the innocent and allowed the guilty to go free.

The Carswells’ experience illustrates a different kind of injustice. Their case would play out in pathology labs, lawyers’ offices and courtrooms for more than seven years. It led to a rare $2 millionfraud judgment against Christus St. Catherine, which was found by a jury to have deceived Linda Carswell about Jerry’s autopsy. It also led to state legislation designed to strengthen families’ entitlement to comprehensive, independent postmortem reviews.

It has not, however, led to closure or accountability. Thanks to an incomplete autopsy, Jerry Carswell’s cause of death remains unknown. He also has not been laid fully to rest. His heart, retained by the pathologist who conducted his postmortem examination, sits in a refrigerated cabinet in a hospital lab to this day.

None of the hospital employees involved in the Carswell case would answer questions from ProPublica. In a written statement, hospital officials said they provided good care to Carswell, and that his autopsy was sufficient.

Linda Carswell, an English teacher at one of Houston’s elite private schools, said her family’s macabre saga has left her lonely and disillusioned. She’s had to navigate complex establishments — medical and legal — while processing the shocking loss of her husband. Measured and proper, with black hair streaked by strands of white, she cannot seem to make peace with her loss.

Linda and Jerry, a history teacher and track coach, had been married for 33 years, raising two sons. She recalled how they would sit on the couch, her head on his chest, listening to the thump-thump of his heart. She is determined to get it back.

“It’s not just a piece of flesh,” Linda said. “Your heart stands for love. It stands for who a person is.”

A call to the medical examiner

Jerry Carswell had been a patient at Christus St. Catherine for two days before he died.

A scan performed on admission showed that, in addition to kidney stones, he had a cancerous tumor on one of his kidneys. It was in an early stage and not considered life-threatening, his hospital doctor said. At times, he was given medication to treat intense pain. He was administered the narcotic Demerol in the hours before his death, records show.

State law required that the hospital report Carswell’s death to the county medical examiner’s office because it was unexplained, unobserved and had occurred soon after he had received medical care. 

But it’s unclear whether this step was taken. Hospital records show that the night administrator made a minute-long phone call to the medical examiner’s office at 6:35 a.m., but the office later provided an affidavit saying  it had no record of the call. 

It may not have mattered. Medical examiners rarely investigate deaths at health-care facilities, experts say. Often, their resources are already stretched by homicides, suicides and other suspicious deaths. They are seldom inclined to dig further if staffers at a medical facility ascribe a death to natural causes.

In court testimony, the night administrator at Christus St. Catherine said she had reported hundreds of hospital deaths to the Harris County medical examiner’s office and it had never taken a case.

As she sat with her husband’s body, Linda Carswell was unaware of the hospital’s reporting requirement, or that the medical examiner was supposed to assess his case. She and Jordan said they noticed that no one at the hospital would answer questions about how Jerry had died. They knew Jerry had been administered narcotics during his stay, and wondered whether the drugs had played a role in his death. 

Linda said that when she asked Patty Elam, a daytime charge nurse, to call the medical examiner’s office to request an autopsy, Elam told her the office had already turned down the case. Elam declined to comment for this story but said in court testimony that she did not speak with Carswell about the call to the medical examiner’s office. Linda did not press the matter further, a decision she came to regret.

Autopsy leaves questions unanswered

With the medical examiner out of reach, Linda Carswell was determined that Jerry’s death would not go unexplained. According to both her and Jordan, she asked Barbara Lazor, a Christus St. Catherine administrator, about whether a private autopsy could be arranged.

Carswell said the administrator told her a private autopsy could cost as much as $10,000. Lazor offered to have the hospital provide an autopsy for free, but Carswell had concerns about authorizing the procedure. She was uneasy about whether the hospital was being entirely truthful with her about Jerry’s care.

Carswell said Lazor assured her that the autopsy would be independent — performed by a pathologist at a different hospital, St. Joseph Medical Center. Elam returned with a consent form. Linda checked off the box requesting a “complete autopsy” and signed her name.

Later, in court, Lazor and Elam would deny ever speaking to the Carswells about anything related to the autopsy. The hospital employees would not comment to ProPublica. 

Pathologist Jeffrey Terrel started the autopsy on Jan. 23, the day after Jerry died.

The scope of his examination wasn’t what the Carswells had assumed it would be, however. Jordan Carswell said he and his mother expected a “complete” autopsy to be exhaustive, including whatever it took to determine the cause of death. Linda and Jordan Carswell said they insisted to hospital officials that they must test Jerry’s urine for drugs to see if they contributed to his death.

But Terrel performed no toxicology tests on Jerry’s blood or urine. Terrel later testified that Jerry’s medical records suggested that drugs could not have contributed to his death, based on dosage levels and the time of administration.

According to experts, Terrel’s approach was standard for a clinical autopsy. Even though the Institute of Medicine has reported that medication errors affect an estimated 1.5 million patients per year, it is not typical to conduct toxicology tests as part of clinical autopsies. They are routine in forensic autopsies.

Terrel testified he had performed more than 1,000 autopsies since starting his career at St. Joseph Medical Center in 1977 and had never determined that an overdose caused a patient's death.  Further, he testified that he had never classified a death as “accidental” because those cases would be referred to the medical examiner, court records show.

In his preliminary report, Terrel said he suspected a heart attack was the cause of death, but his final autopsy report said there was no evidence of a heart attack. In court, Terrel said he still thinks a heart attack is the most medically probable explanation.

Terrel also testified that the cause of death was natural, ruling out medical error.

As Terrel performed Jerry Carswell’s postmortem exam, Linda came across some discomfiting information. St. Joseph Medical Center was owned by the same company that owned Christus St. Catherine, the hospital where Jerry died. The pathology group that employed Terrel worked for both facilities, she learned.

Carswell said that if she had known that the hospitals were linked, she would have paid for a private autopsy elsewhere. Six days after her husband’s death, she and Jordan delivered a letter to the pathology lab at St. Joseph Medical Center, requesting the preservation of tissue and fluid samples “following any diagnosis that may be made.”

Terrel later testified that he interpreted Carswell’s letter as a legal threat. He stopped working on the case immediately, putting Jerry Carswell’s tissue samples and specimen slides into a cabinet.

Jerry Carswell’s admitting physician, urologist Paul Cook, filled out and signed the death certificate. Cook listed several findings from Terrel’s final autopsy report as causes of death:  inflammation and infection of the abdomen and stomach, as well as the cancerous kidney tumor. He checked off “natural” for the manner of death.

Yet, during the trial, he testified that Jerry Carswell hadn’t needed treatment for the stomach or abdominal problems and that the prognosis for the kidney cancer was good. 

Cook did not respond to a request to speak to ProPublica.

'You have Mr. Carswell's heart'

Linda Carswell compares not knowing why her husband died to the way a soldier’s widow would feel if her husband went to battle and never returned. It ate away at her psyche. Hospital officials’ refusal to discuss the matter fanned her grief into anger.

On June 7, 2005, Carswell sued the hospital in Harris County District Court, alleging negligence and fraud. “It was strictly for us to know what exactly had happened,” she said of the lawsuit.

The legal proceedings went on for years. In October 2006, her attorney, Carl Shaw, took a deposition from Terrel that led to a ghastly revelation. Shaw was attempting to determine what evidence Terrel had retained from the case.

“Is there anything more than the slides?” Shaw asked.

“Yes. The heart,” Terrel replied.

Shaw was taken aback. “You have Mr. Carswell’s heart,” he repeated. 

“Yes,” Terrel confirmed, “and there may be blocks of other tissue.”

Terrel went on to say that he had not informed anyone of what he had done, including Linda Carswell.

When Shaw told Linda the pathologist had kept her husband’s heart, she collapsed into a chair in her kitchen and wept.

Later, in trial testimony, Terrel said he had misspoken in the deposition and that he had not retained the entire heart. 

Pathologists told ProPublica that organs are typically returned or disposed of once tests performed as part of an autopsy are complete. It’s inappropriate to retain them for an extended period without the consent of the next of kin, said Dr. Victor Weedn, an assistant medical examiner for the state of Maryland.

In March 2008, a Harris County judge hit Christus Health, the company that owns Christus St. Catherine, with a $250,000 fine for improperly keeping Jerry Carwell’s heart tissue and running tests on it without his family’s permission, as well as mishandling his blood serum. “They were using Jerry’s heart against him,” Linda said. “I was just furious.”

The lawsuit finally went to trial in August 2010. After 22 days of testimony, a jury cleared hospital nurses of negligence but determined that Christus St. Catherine officials had committed fraud when obtaining consent for the autopsy from Linda Carswell. The jury awarded Linda Carswell $2 million, including $1 million in punitive damages.

The hospital has appealed, arguing there is insufficient evidence that administrators misled Linda Carswell or knowingly made false statements about the autopsy. 

Despite the jury’s multimillion-dollar affirmation, Linda Carswell remains angry that the negligence claim failed. The case was difficult to argue without an autopsy yielding a confirmed cause of death, said Mike O’Brien, the Carswells’ trial attorney.

“Without the autopsy, you’re hamstrung,” he said.

Autopsy reform in Jerry Carswell's name

As the lawsuit dragged on, Linda Carswell mulled over the events of that morning in the hospital. She was not aware of the differences between forensic and hospital autopsies. And when she looked up the law, she learned that the medical examiner’s office was required to consider cases like Jerry’s. The realization that she could have pushed for a forensic autopsy by the medical examiner’s office caused her to roam the house at night, sleepless, wondering how she could have been so ignorant about the law.

Carswell was determined to ensure that other families were informed of their rights. She discovered that health-care facilities used different autopsy consent forms, some of which did not clearly set out families’ entitlement to independent private or forensic autopsies. She called a family friend, Texas Rep. Bill Callegari, and urged him to introduce legislation requiring doctors to use standardized forms that would make a complex system easier to navigate.

Callegari could identify with Carswell’s distress. Decades earlier, his brother, a 27-year-old Air Force B-52 navigator, had been killed during a training mission in Wisconsin under mysterious circumstances.  Callegari finally learned the cause of the accident after he was elected in 2000. A stranger, recognizing his name, explained that the plane had malfunctioned while testing some high-tech equipment.  

The Carswell family would never have a similar reprieve from the pain of not knowing. “What happened in this case was atrocious,” Callegari said of Jerry Carswell’s death. “You can feel the anguish. You want to know. Right is right, and you have a right to know what happened.”

In September, the Jerry Carswell Memorial Act, which Linda worked with Callegari to draft, went into effect. It requires Texas hospitals to use a standardized autopsy consent form that spells out families’  rights when a loved one dies in a medical facility, including: the circumstances under which a medical examiner is required to conduct an investigation; that, in cases not taken by a medical examiner, survivors have a right to have an independent pathologist conduct a clinical autopsy; that the family has a right to place special limitations on the examination; and that the person giving consent for the autopsy controls the release of the remains.

Had the law been in place when Jerry died, Linda said, she is certain she would have the answers she needs. “And most likely Jerry’s heart would not still be in a plastic bucket at St. Joseph’s.”

The missing heart

In the years since her late husband’s autopsy, Linda Carswell has repeatedly asked the attorneys representing the hospitals and pathologist to return his heart.

The hospital attorneys have refused, saying the heart could become relevant evidence in the case of a retrial. The attorney for Terrel, the pathologist, said the heart was no longer in the possession of Terrel, the pathology group or St. Joseph Medical Center. Rather, it was owned by a different company that has since taken over the hospital, the attorney said. In 2006, Hospital Partners of America purchased St. Joseph, but the company went bankrupt two years later. Carswell sent a letter to the bankruptcy trustee, offering to buy back Jerry’s heart. It was an asset of little worth in the bankruptcy, she told the trustee, but of great value to her family. 

Linda recently learned that St. Joseph Medical Center is under new ownership, but she’s not giving up.

She has selected a special urn where her husband’s heart can be laid to rest.

Update, May 24, 2016: The winding litigation related to the death of Linda Carswell’s husband led to a Texas Supreme Court opinion on Friday that unanimously ruled against the widow. The court determined that Carswell’s fraud allegation should have been included in her original malpractice claim, and because it was added more than two years after her husband’s death it exceeded the statute of limitations for the case, making it invalid.