Severely disabled Iowans are dying at a state-run institution. Staff say care has declined, while the state defends its care.

©Copyright 2019, Des Moines Register and Tribune Co.

GLENWOOD, Ia. — Employees at the state institution here have repeatedly warned officials that medical care for 200 of Iowa’s most disabled residents has eroded to a deadly point.

Fourteen Glenwood Resource Center residents have died since last June — more than twice the usual rate — according to public records, obituaries and interviews with former and current staff members.

Critics, including several former managers, say some of the deaths were unavoidable. But they believe others could have been prevented by more careful monitoring and aggressive treatment of the facility’s fragile patients. 

“It’s not normal to have this many deaths. This is too many to be a coincidence,” said Kathy King, a former administrator who retired last spring after 43 years at the state-run institution. 

The western Iowa institution cares for adults with severe intellectual disabilities, such as from brain injuries, birth defects or seizures. Many of its residents can’t speak, walk or feed themselves.

Several leading members of the facility’s medical staff have quit or been pushed out since a new superintendent took over in September 2017. Public records show the losses include the unexplained firing of one of its three longtime physicians last year and the angry resignation of another.

The Iowa Department of Human Services, which runs the institution, denied that the rise in patient deaths was due to insufficient care.

Patient 'seemed to be in pain' 

Front-line staff members questioned the quality of care after a severely disabled resident died last September. 

Seventeen employees signed a formal grievance letter about the case, which the Des Moines Register obtained under Iowa’s open records law. It says residential care workers, who attend to residents around the clock, tried to warn nurses the patient was showing distress.

The staff members wrote that the patient had been lethargic and “seemed to be in pain.” The patient was grimacing and banging or clenching his hands, the letter says. The staff noted his stools were watery, and he had blood in his catheter bag.

The front-line staff wrote that when they told a nurse about the patient’s struggles, she replied that, because it was the weekend, she would request he be seen Monday, but she was "not sure that it would happen.”

The letter concluded: “Maybe if (he) was treated sooner or taken more seriously there would have been a different outcome.”

A manager later wrote that she spoke to the staff members who signed the letter, told them she appreciated their concerns and would discuss those concerns with the nursing supervisor. 

State officials redacted the patient’s name and the letter's date before releasing it. The Register learned the letter was about resident Arthur Paul Hicks Jr., 61. 

Hicks' death certificate lists his cause of death as pneumonia caused by septic shock and a urinary tract infection. It also said he had anemia, which is a lack of oxygen-carrying cells in the blood. No autopsy was performed in his case or in any of the 13 other patient deaths for which the Register located death certificates.

Hicks, who went by Paul, lived at the institution for more than 50 years. His brother and legal guardian, Dennis Hicks of Richmond, Indiana, said he was unaware of staff concerns about Paul Hicks' care until the Register contacted him. 

Dennis Hicks said he always had confidence in his brother's care. "Everything I have to say, or will ever say, regarding the staff of the Glenwood Resource Center, is of the highest praise and admiration," he wrote in an email to the Register. 

The staff treated his brother like family, Dennis Hicks wrote. "From his first day at Glenwood, until his last day, they loved and cared for Paul, and that was all I could have ever asked for."

The 14 deaths since last June include seven in the first three months of 2019. Over the previous decade, the facility saw an average of fewer than seven deaths per year, according to the Department of Human Services.

The recent increase in deaths comes even though the total number of residents living at the complex has dropped by more than a third, from more than 300 patients in 2008 to about 200 now.

The Department of Human Services acknowledges the facility has seen turnover in its medical staff but denies the quality of care has eroded.

Rick Shults, a top department administrator who oversees the state’s four institutions, hired Glenwood's superintendent, Jerry Rea. Rea came from Kansas, where he ran similar facilities. Shults, who also used to work for the state of Kansas, said in an interview that some Glenwood Resource Center employees became upset because Rea changed longstanding practices in an effort to improve care.

Department leaders take the Glenwood criticisms seriously, Shults said. “Current and former employees are concerned about the lives of individuals there, and I greatly appreciate that concern," he said. 

Physician resigns over patients' care

The 17 staff members who signed last fall's letter about a patient death were not the first to raise the alarm, records show. 

In March 2018, a physician at the Glenwood Resource Center told DHS Director Jerry Foxhoven that the quality of the institution's health care had plummeted.

“Leadership at the facility has gutted the medical staff in such a way that they have placed our residents, the state’s most vulnerable adults, at risk,” Dr. Michael Langenfeld wrote to Foxhoven in an email. “Practicing here in the present status of affairs is dangerous, both personally and professionally.”

Langenfeld told Foxhoven he was resigning because of the situation, according to the email, which the Register obtained under the open records law. The doctor said he had worked at the institution 10 years.

Department spokesman Matt Highland acknowledged Foxhoven received Langenfeld’s email but said the director could not recall if he responded. Highland said the department was unable to find an email reply from Foxhoven to Langenfeld, whose resignation took effect the day he wrote to the director.

Rea fired another of the institution's three doctors, John Heffron, in March 2018. Heffron told the Register he worked at the facility eight years before Rea suspended him without explanation in December 2017, then fired him. 

The department declined a Register request to explain why Heffron was fired, and it denied the paper's requests to interview Foxhoven and Rea. 

King, who retired as a treatment program administrator, is one of 14 former or current staff members of the institution who shared their concerns about the situation with the Register.

Some spoke on the condition of anonymity, because they still work at the institution or because they worry about criticizing one of the top employers in the southwest Iowa town of 5,000 residents. Several of the critics, like King, are former managers at the institution, which has an annual budget of nearly $80 million in state and federal money. 

Pharmacist Sheila Glencer led the facility’s pharmacy for about six years before quitting in February 2018. She said she liked the job, but felt care quality was declining.

“When I was leaving there, the place was in a general state of decay. … I left because I felt like I was part of a sinking ship," she said. 

Health care professionals were no longer working as a team in treating their fragile patients, she said, and the institution’s new leaders were not open to talking about the problems.

“New management was kind of like, if you weren’t 'a yes man,' then you needed to leave the table,” said Glencer, who now works at a retail pharmacy in Omaha.

The patients who died since last June were ages 38 to 78. Death certificates show their causes of death included bowel obstructions, brain bleeding, choking or pneumonia.

Department defends treatment

Shults, division director for mental health and disability services, spoke on behalf of the Department of Human Services.

He defended the quality of medical services at the institution. He said the medical staff when Rea took over in 2017 had three physicians, one physician assistant and one nurse practitioner.

The staff now includes one physician, three nurse practitioners and a half-time psychiatrist, he said. Shults confirmed critics’ contention that the nurse practitioners only recently gained their advanced licenses, although he said they have extensive previous experience as registered nurses.

Shults did not dispute that several of the institution’s residents died recently. When asked if he was concerned about the number of deaths, he responded: “I have concerns every time an individual in a state resource center or any of our facilities passes away.”

Shults said each such death is extensively reviewed “to make sure that we provided the care and treatment necessary for those individuals.” 

In response to the Register’s open records request, the department released dozens of pages from mortality reviews. However, officials blanked out almost all information from those records. The department said the information could be redacted because it was part of a confidential “peer review” process within the facility. 

Shults declined to specify what the mortality reviews concluded.

“But I can tell you that if they identified anything that needed to be improved, it was, in fact, addressed,” he said. He added that none of the internal reviews found that a patient’s care had been “insufficient or improper.”  

King and several other former staff members criticized Rea's 2018 decision to close the facility’s infirmary, a separate building where residents received around-the-clock monitoring by nurses. The infirmary was in one of the ranch-style "houses" placed around the facility's 240-acre campus.

Supporters of the infirmary said it provided important oversight for patients after they were released from hospitals or if they became ill while staying in their regular homes on campus.

Shults said the institution’s leaders closed the infirmary after determining it would be better to care for ill patients in their homes, which are familiar areas they share with other residents.

Families pleased with care, unaware of problems

The Register contacted survivors of several of the Glenwood Resource Center patients who died over the past year. They all said they were unaware of concerns about the state of medical care, and were grateful for the support their loved ones received over decades at the institution.

“We can’t compliment or thank the Glenwood Resource Center enough for all they’ve done for our son,” said Tarquin Cameron of Milford. Cameron’s son, Joe, 63, died in July 2018. The cause of death was listed as respiratory failure due to brain swelling and bleeding on the brain.

Joe Cameron had lived at the facility since he was about 6, and the staff there treated him like family, Tarquin Cameron said. Although he became increasingly fragile in recent years, his father said, “he was a happy person.”

Tarquin Cameron said his family saw no reason to worry about the level of care at the institution, and he sees no point in rehashing it.

“Our son is gone. There’s nothing we can do,” he said.

► Medicaid mess: UnitedHealthcare, Iowa Medicaid leaders blame each other 

►Child care: Why doesn't the state limit restraint of children in child care centers?

Richard Crouch, president of the institution's parent/family council, said he also had not heard serious concerns about the quality of medical care at the facility. Crouch, whose son Gary is a longtime resident, said if staff members had such concerns, they should have informed his group about them. 

The staff members who brought their concerns to the Register said they did so only after complaints raised internally had no effect.

The facility has endured bad publicity several times over the years, including when several residential treatment workers were accused of abusing residents in 2017. Staff members considered some of the past media coverage unfair to the institution, King said.

“This is not a group that would normally run to the newspaper,” she said.

King and Langenfeld said they shared their concerns last year with an official of the Iowa Department of Inspections and Appeals, which regulates state institutions. The department does not comment on investigations unless they lead to formal citations, which have not been issued. Deputy Director Aaron Baack told the Register the department "has not received a complaint, formal or informal, regarding a decline in quality of medical care."

Dennis Hicks, whose brother Paul was among the residents who have died in the past year, said he was contacted recently by an investigator from the Iowa Board of Medicine, who was looking into something related to the institution. 

Hicks said he hopes any investigation ensures residents at the facility receive adequate care in the future.  

► Reporting this story took time. Support reporters who bring you news that matters.

The Iowa Board of Medicine licenses physicians and can sanction them for unethical behavior or poor care. The board's executive director, Kent Nebel, declined to say what the board is looking into at the Glenwood institution, noting state law prohibits him from commenting on investigations unless administrative charges are filed. 

Former Glenwood Resource Center staff members said it’s hard to point to any specific death and say it could have been prevented with better medical care. But they’re worried about the mounting numbers.

“You keep hearing about another death, another death, another death — and you wonder when it’s going to stop,” said Katie Rall, who served nearly 12 years as the facility’s director of quality management.

Rall’s job was to ensure the facility met standards, which include those imposed by a legal agreement the state reached with the U.S. Department of Justice in 2004. The legal agreement, which ended in 2010, stemmed from federal officials’ concerns about the quality of care at the Glenwood Resource Center and a similar state institution in Woodward.

Rall said she resigned in February 2018 after Rea suspended her without an explanation in November 2017. She has found a new job in Omaha, but she thinks often about the residents she came to know at the Glenwood Resource Center.

The medical staff used to be led by doctors, nurses and other professionals who had served there for years, Rall said. They knew each patient, including those who were unable to speak. Veteran care providers could tell right away if something was amiss with a patient, Rall said. That connection has faded, she said.

Rall hopes that by speaking up, she and other critics can spur a return to the quality of health care the Glenwood Resource Center offered a few years ago.

The critics don't want to see the institution shuttered, she said. At this point, the only new residents it accepts are Iowans whose disabilities are too complex for private facilities to handle, she said.

Many of its longtime residents are so frail, a transfer to an unfamiliar environment could kill them, Rall said. 

"You have a whole bunch of people who have lived there most of their lives," she said. "That place is their home. It's really the only home they've ever known."

Glenwood doctor fired; the state won't say why 

Physician John Heffron, who worked eight years at the Glenwood Resource Center, said he can only guess why Superintendent Jerry Rea kicked him off the institution's medical staff.

Heffron was one of three physicians on staff when Rea became superintendent in September 2017. Heffron said in an interview that Rea suspended him in December 2017, then fired him in March 2018. Rea never explained why, the doctor said.

Heffron said he suspects his ouster stemmed from his aggressive care of the institution's disabled residents.

"I think I got let go because I was a big spender” on care, he said.

Heffron said a supervisor previously told him he ordered too many tests on patients, costing money. Heffron said he contended the tests were necessary because many of the patients were frail and took numerous medications. Many were nonverbal, so they couldn’t tell staff members if they were feeling poorly. Regular blood tests helped keep tabs on how they were faring, he said.

Also, Heffron said, he didn’t hesitate to send patients to a hospital if they seemed unstable. The nearest hospital is 20 miles away in Council Bluffs.

The institution’s residents are fragile, he said.

“It didn’t take much for them to get really sick really quickly," he said.

The Register asked the Department of Human Services to explain why Heffron was fired. The newspaper cited a state law passed in 2017, which says the reasons for the firing or demotion of a government employee are no longer confidential under Iowa's open records law. In response, DHS spokesman Matt Highland released the two sentence dismissal letter that Rea sent to Heffron, telling the doctor “your services with the Glenwood Resource Center are no longer required.”

Highland said release of the letter fulfilled the law’s requirement that the “documented reason and rationale” for a state employee's firing be released to the public. He declined to comment further.

Randy Evans, executive director of the Iowa Freedom of Information Council, disputed the Department of Human Services claim that it fulfilled the law's intent by releasing a termination letter with no specific reason included.

"The change in the law made clear that government entities cannot keep secret why an employee was dismissed. The law requires the Department of Human Services and other government entities to explain the documented reasons and rationale for a termination. The DHS explanation is a non-explanation," said Evans, whose council's members include the Des Moines Register.

Evans pointed to a 2018 advisory opinion from Iowa's Public Information Board, which is appointed by the governor. The board ruled that government agencies must provide clear answers to the public about why an employee was fired or demoted.

"The information released must include sufficient factual information to support and substantiate the action taken," the board wrote.