Shana Dorsey first caught sight of the purplish wound on her father's lower back as he lay in a suburban Chicago hospital bed a few weeks before his death.
Her father, Willie Jackson, had grimaced as nursing aides turned his frail body, exposing the deep skin ulcer, also known as a pressure sore or bedsore.
"That was truly the first time I saw how much pain my dad was in," Dorsey said.
The staff at Lakeview Rehabilitation and Nursing Center, she said, never told her the seriousness of the pressure sore, which led to sepsis, a severe infection that can quickly turn deadly if not cared for properly. While a resident of Lakeview and another area nursing home, Jackson required several trips to hospitals for intravenous antibiotics and other sepsis care, including painful surgeries to cut away dead skin around the wound, court records show.
Dorsey is suing the nursing center for negligence and wrongful death in caring for her dad, who died at age 85 in March 2014. Citing medical privacy laws, Lakeview administrator Nichole Lockett declined to comment on Jackson's care. In a court filing, the nursing home denied wrongdoing.
The case, pending in Cook County Circuit Court, is one of thousands across the country that allege enfeebled nursing home patients endured stressful, sometimes painful, hospital treatments for sepsis that many of the lawsuits claim never should have happened.
My father was like my best friend. Most people go to their mom to talk and tell all their secrets, and for me it was my dad.
Year after year, nursing homes around the country have failed to prevent bedsores and other infections that can lead to sepsis, an investigation by Kaiser Health News and the Chicago Tribune has found.
No one tracks sepsis cases closely enough to know how many times these infections turn fatal.
However, a federal report has found that care related to sepsis was the most common reason given for transfers of nursing home residents to hospitals and noted that such cases ended in death "much more often" than hospitalizations for other conditions.
A special analysis conducted for KHN by Definitive Healthcare, a private health care data firm, also suggests that the toll — human and financial — from such cases is huge.
Examining data related to nursing home residents who were transferred to hospitals and later died, the firm found that 25,000 a year suffered from sepsis, among other conditions. Their treatment costs Medicare more than $2 billion annually, according to Medicare billings from 2012 through 2016 analyzed by Definitive Healthcare.
In Illinois, about 6,000 nursing home residents a year who were hospitalized had sepsis, and 1 in 5 didn't survive, according to Definitive's analysis.
"This is an enormous public health problem for the United States,” said Dr. Steven Simpson, a professor of medicine at the University of Kansas and a sepsis expert. "People don't go to a nursing home so they can get sepsis and die. That is what is happening a lot."
The costs of all that treatment are enormous. Court records show that Willie Jackson's hospital stays toward the end of his life cost Medicare more than $414,000. Medicare pays Illinois hospitals more than $100 million a year for treatment of nursing home residents for sepsis, mostly from Chicago-area facilities, according to the Medicare claims analysis.
Sepsis is a bloodstream infection that can develop in bedridden patients with pneumonia, urinary tract infections and other conditions, such as pressure sores. Mindful of the dangers, patient safety groups consider late-stage pressure sores to be a "never" event because they largely can be prevented by turning immobile people every two hours and by taking other precautions. Federal regulations also require nursing homes to adopt strict infection-control standards to minimize harm.
Yet the failures that can produce sepsis persist and are widespread in America's nursing homes, according to data on state inspections kept by the federal Centers for Medicare & Medicaid Services. Many of the lawsuits allege that bedsores and other common infections have caused serious harm or death. The outcome of these cases is not clear, because most are settled and the terms kept confidential.
Cook County, where the private legal community is known to take an aggressive approach to nursing homes, has more of these suits than any other metro area in the U.S., KHN and the Tribune found by reviewing court data.
State inspectors also cite thousands of homes nationally for shortcomings that have the potential to cause harm. Inspections data kept by CMS show that since 2015 94 percent of homes operating in Illinois have had at least one citation for conditions that increase the risk of infection. These citations include care related to bedsores, catheters, feeding tubes and the home's overall infection-control program.
"Little infections turn to big infections and kill people in nursing homes," said William Dean, a Miami lawyer with more than two decades of experience suing nursing homes on behalf of patients and their families.
Much of the blame, regulators and patient advocates say, lies in poor staffing levels. Too few nurses or medical aides raises the risks of a range of safety problems, from falls to bedsores and infections that may progress to sepsis or an even more serious condition, septic shock, which causes blood pressure to plummet and organs to shut down.
Staffing levels for nurses and aides in Illinois nursing homes are among the lowest in the country. In the six-county Chicago area, 78 percent of the facilities' staffing levels fall below the national average, according to government data analyzed by KHN.
Matt Hartman, executive director of the Illinois Health Care Association, which represents more than 500 nursing homes, acknowledged low staffing is a problem that diminishes the quality of nursing care.
Hartman blamed the state's Medicaid payment rates for nursing homes — about $151 a day per patient on average — which he said is lower than most other states. Medicaid makes up about 70 percent of the revenue at many homes, he said.
Last October, CC Care LLC, an Illinois nursing home group that specializes in treating mentally ill patients on Medicaid, filed for bankruptcy, arguing that the state's "financial troubles have been disastrous for all nursing homes."
In a July court filing, CC Care creditors' committee argued that the company couldn't stay afloat relying on Illinois Medicaid payments, which it called "slow, erratic and significantly less than what we are due."
Pat Comstock, executive director of the Health Care Council of Illinois, said nursing homes she represents "are operating in an increasingly difficult environment in Illinois, yet they continue to prioritize delivering the best care possible to residents in a safe and secure setting."
A Festering Complaint
Shana Dorsey remembers her father as a quiet but friendly man. He worked as a uniformed bank security guard and picked up extra cash fixing neighbors' cars in an empty lot adjacent to his West Side apartment building. He was a stickler for detail, who relished teaching his granddaughter the state capitals and was always ready to lend a hand to help his daughter, who now works for a Chicago property management firm.
But age and declining health caught up with the Army veteran, who by his early 80s began to exhibit signs of dementia and moved into an assisted living apartment.
Dorsey knew her dad needed more specialized care when she found him sitting in his favorite peach recliner in his apartment, unable to get up and incontinent.
He required more intense medical and personal care as his kidney disease worsened and he became more confused, medical records show. In his last 18 months of life, he cycled in and out of hospitals eight times for treatment of septic bedsores and other infections, according to court records.
The Chicago law firm representing Dorsey, Levin & Perconti, provided KHN and the Tribune with medical records and additional court filings that cover Jackson's care.
Jackson had two pressure sores in late November 2012 when he was first admitted to Lakeview nursing center from the Jesse Brown VA Medical Center in Chicago, according to lawyers for his daughter.
These wounds healed, but in late September 2013, Jackson spiked a fever and had an infected sore in his lower back that exposed the bone, causing what Dorsey's lawyers called "significant pain."
The nursing home transferred Jackson to Presence St. Joseph Hospital in Chicago, where surgeons cut away the dead skin and administered antibiotics. At that time, the sore was as wide as a grapefruit and had "copious purulent drainage, foul smell and bleeding," Dorsey's lawyers argue. Tests confirmed sepsis, and the wound had grown so deep that it infected the sacral bone in his back, a condition known as osteomyelitis, the lawsuit said.
In November 2013, Dorsey moved her father to another nursing home. He required three more hospital visits before Dorsey made the difficult decision to place Jackson in hospice care. He died March 14, 2014, from "failure to thrive," according to a death certificate.
In her suit, Dorsey, 39, argues that Lakeview nursing staff knew Jackson was at "high risk" for bedsores because of his declining health. Yet the home failed to take steps to prevent the injuries, such as turning and repositioning him every two hours, according to the suit. That didn't happen about 140 times in August 2013 alone, Dorsey's lawyers said.
"My father was like my best friend. Most people go to their mom to talk and tell all their secrets, and for me it was my dad," Dorsey said in a November 2015 deposition.
While Lakeview declined to discuss Jackson's treatment, it has denied negligence and argued in court filings that its actions were not to blame for Jackson's death. Lockett, the home's administrator, said the facility "strictly follows" all regulations to minimize the effects of skin breakdowns that can occur naturally with age.
"We are grateful for the daily opportunity to enhance the lives of seniors and other chronically ill populations in our community," Lockett said in a statement.
Poor infection control ranks among the most common citations in nursing homes. Since 2015, inspectors have cited 72 percent of homes nationally for not having or following an infection-control program. In Illinois, that figure stands at 88 percent of homes.
Illinois falls below national norms for risks of pressure sores or failure to treat them properly in nursing homes. Inspectors have cited 37 percent of the nation's nursing homes for this deficiency, compared with 60 percent in Illinois, according to CMS records. Only three states were cited more frequently.
Inspectors in November 2016 cited Alden Town Manor Rehabilitation and Health Care Center in Cicero, Ill., for neglect due to its care of an unnamed 83-year-old man with pressure ulcer sores that went untreated. Gangrene had set in by the time the staff sent him to the hospital, where surgeons ended up amputating his right leg above the knee, according to the inspectors' report and citation. Alden Town Manor had no comment.
Dean, the Miami lawyer, said that nursing home staffs often miss early signs of infection, which can start with fever and elevated heart rate, altered mental status or not eating. When those symptoms occur, nurses should call a doctor and arrange to transfer the patient to a hospital, but that process often takes too long, he said.
"They don't become septic on the ambulance ride over to the hospital," Dean said.
There is little agreement over how much staff should be required in nursing homes. Federal regulations simply mandate that a registered nurse must be on duty eight hours per day, every day. In 2001, a federal government study recommended a daily minimum of 4.1 hours of total nursing time per resident, which includes registered nurses, licensed practical nurses and certified nursing assistants, often referred to as aides. That never became an industry standard or federal regulation, however.
Most states set requirements lower and face industry resistance to raising the bar. A California law requiring 3.5 hours per resident as of this July 1 is drawing intense criticism from the industry, for instance.
In addition, staffing can fluctuate, particularly over the weekends. A recent KHN investigation found that on some days, nursing home aides could be in charge of twice as many residents as normal.
At a minimum, Illinois requires 2.5 hours of direct care daily for residents. Yet federal nursing home payroll data show that at least 1 in 4 Chicago-area nursing home residents live in facilities that aren't consistently providing that much care, KHN found.
Nationally, each aide is responsible for 10 residents on average; in the six-county Chicago area, the average is 13 residents per aide.
Federal officials have linked inadequate staffing to bedsores and other injuries, such as falls. If left unattended, even a small ulcer or sore can become septic, and once that happens, a patient's life is in imminent danger.
In October 2014, Milwaukee-based Extendicare denied wrongdoing but paid $38 million to settle a federal False Claims Act lawsuit that accused it of not having enough staff on hand in 33 nursing homes in eight states, including Indiana, and failing to take steps to prevent bedsores or falls.
In other cases, federal officials have alleged that some nursing homes overmedicate residents — which can result in injuries such as falls from beds or wheelchairs and bedsores — rather than staff up to care for them properly.
Little infections turn to big infections and kill people in nursing homes.
In May 2015, owners of two nursing homes in Watsonville, Calif., agreed to pay $3.8 million to settle a whistleblower lawsuit alleging the homes persistently drugged patients, contributing to infections and pressure sores.
The suit alleged that an 86-year-old man who could barely move after receiving a shot of an anti-psychotic medication lost his appetite and spent most of the day in bed, "was not turned or repositioned and developed additional pressure ulcers." He ran a 102-degree fever, but the staff failed to notify his doctor for three days, according to the suit.
Hospital doctors later diagnosed the man with sepsis and an infected pressure ulcer. The home did not admit wrongdoing and had no comment.
Personal injury lawyers and medical experts say that poor infection control often sends nursing home residents to hospitals for emergency treatment — and that the stress can hasten death.
Elderly people often "don't have the ability to bounce back from an infection," said Dr. Karin Molander, a California emergency room physician and board member of the Sepsis Alliance advocacy group.
That odyssey of multiple, stressful trips to the hospital is a common thread in negligence and wrongful death lawsuits involving sepsis or bedsores. KHN identified more than 8,000 suits filed nationwide from January 2010 to March of this year that allege injuries from failing to prevent or treat pressure sores and other serious infections.
Molander said serious bedsores indicate "someone is being ignored for an extended time period."
"When we see patients like that we file [patient neglect] complaints with adult protective services," she said.
Some of these cases led to million-dollar jury verdicts. In 2017, a Kentucky jury awarded $1.1 million to the family of a woman who suffered from bedsores and sepsis in a nursing home. In a second case last year, a jury awarded $1.8 million to a widow who alleged a Utah nursing home failed to turn her husband often enough to prevent bedsores, which led to his death.
Lawyers filed more than 1,400 of the cases from January 2010 to March of this year in Cook County Circuit Court, which tops all metro areas across the country in the KHN sample.
Nursing homes complain that garish billboards to solicit clients are a fixture in Chicago, where many attorney websites also boast of recent million-dollar verdicts from bedsore cases alone.
"We see an incredible amount of lawsuits out there," said Hartman, of the Illinois nursing home association. "We feel we have a target on our backs."
Trial lawyers counter that nursing homes often try to duck responsibility for poor care by creating complex corporate structures to limit their liability. Yet Hartman derided these suits as "cash cows" for law firms that can rack up six-figure legal fees as cases drag on. The nursing home industry supports tort reforms that would compensate injured persons but also bring a quicker resolution of claims, he said.
"That is something that needs to be fixed in Illinois," Hartman said.
Avoidable Hospital Transfers
In September 2013, the Centers for Medicare & Medicaid Services said it was working to reduce avoidable transfers from nursing homes to hospitals. CMS had previously called these trips "expensive, disruptive and disorienting for frail elders and people with disabilities."
The plans came in the wake of a critical 2013 Department of Health and Human Services audit that found Medicare had paid about $14 billion in 2011 for these transfers. Care related to sepsis cost Medicare more than the next three costliest conditions combined, according to the audit.
The auditors have not checked in to see if Medicare has since reduced those costs and have no plans to do so, a spokesman for the HHS Office of Inspector General said.
However, Definitive Healthcare's analysis of billing data, modeled after the HHS audit, shows little change between 2012 and 2016, both in terms of deaths and costs.
Wendy Meltzer, executive director of Illinois Citizens for Better Care, said that hospital trips caused by treatment for sepsis can be "emotionally devastating" for confused elderly patients.
"It's not a choice anybody makes. It's horrible for people with dementia," Meltzer said. "Some never recover from that. It's a very real phenomenon and it's cruel."
University of Maryland master's student Chris Cioffi contributed to this report.
This story was jointly produced by Kaiser Health News and the Chicago Tribune by reporters based in Washington, D.C., and Chicago. Fred Schulte is a senior correspondent for KHN and Elizabeth Lucas is data editor. Joe Mahr is a Tribune reporter.
KHN's coverage of these topics is supported by John A. Hartford Foundation, Gordon and Betty Moore Foundation and The SCAN Foundation
This article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.