Washington, DC, United States (KaiserHealth) – Diabetic ketoacidosis is a terrible way to die. It’s what happens when you don’t have enough insulin. Your blood sugar gets so high that your blood becomes highly acidic, your cells dehydrate, and your body stops functioning.
Nicole Smith-Holt lost her son to diabetic ketoacidosis, three days before his payday, because he couldn’t afford his insulin.
“It shouldn’t have happened,” Smith-Holt said, looking down at her son’s death certificate on her dining room table in Richfield, Minn. “That cause of death of diabetic ketoacidosis should have never happened.”
The price of insulin in the U.S. has more than doubled since 2012 alone. That’s put the lifesaving hormone out of reach for some people with diabetes, like Smith-Holt’s son Alec Raeshawn Smith. It has left others scrambling for solutions to afford the one thing they need to live. I’m one of those scrambling.
Not Enough Time
Most people’s bodies create insulin, which regulates the amount of sugar in the blood. The roughly 1.25 million of us in the U.S. with Type 1 diabetes have to buy insulin at a pharmacy because our pancreases stopped producing it.
My first vial of insulin cost $24.56 in 2011, after insurance. Seven years later, I pay more than $80. That’s nothing compared with what Alec was up against when he turned 26 and aged off his mother’s insurance plan.
Smith-Holt said she and Alec started reviewing his options in February 2017, three months before his birthday on May 20. Alec’s pharmacist told him his diabetes supplies would cost $1,300 a month without insurance – most of that for insulin. His options with insurance weren’t much better.
Alec’s yearly salary as a restaurant manager was about $35,000. Too high to qualify for Medicaid, and, Smith-Holt said, too high to qualify for significant subsidies in Minnesota’s Affordable Care Act insurance marketplace. The plan they found had a $450 premium each month and an annual deductible of $7,600.
“At first he didn’t realize what a deductible was,” Smith-Holt said. She said Alec figured he could pick up a part-time job to help cover the $450 per month.
Then Smith-Holt explained to her son what a deductible was.
“You have to pay the $7,600 out-of-pocket before your insurance is even going to kick in,” she recalled telling him. Alec decided going uninsured would be more manageable. Although there might have been cheaper alternatives for his insulin supply that Alec could have worked out with his doctor, he never made it that far.
He died less than one month after going off of his mother’s insurance. His family thinks he was rationing his insulin – using less than he needed – to try to make it last until he could afford to buy more. He died alone in his apartment three days before payday. The insulin pen he used to give himself shots was empty.
“It’s just not even enough time to really test whether [going without insurance] was working or not,” Smith-Holt said.
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-, 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-0 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.
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.
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