In May 2023, at her youngest daughter’s graduation from Duquesne University in Pittsburgh, Pennsylvania, Jackie Duda was touched to receive a bouquet of flowers from the science department’s administrative assistant.
“I know you didn’t think you’d live to see this day,” the secretary said.
Duda cherishes moments like these because she’s living on what she considers “bonus time.”
Almost exactly two years prior, Duda was fading in and out of consciousness in an emergency department at a local hospital where she was being intubated. She remembers hearing the physician saying that she wouldn’t survive the ambulance ride to a trauma center 75 miles away in Baltimore, Maryland and directing that she be taken by helicopter.
For about a week before arriving at the hospital, Duda’s abdomen had swollen significantly and she experienced severe hip pain. Her daughter called 911 when her temperature climbed to 102 degrees Fahrenheit. EMS took her to the emergency department at Meritus Medical Center in Hagerstown, Maryland, where she reported the hip pain, but her physician realized that something else was going on. He ordered a CT scan of her abdomen and discovered that her colon had perforated and bacteria and fecal matter were leaking into her gut, leading to an infection and an extreme immune response that threatened to shut down her organs.
That immune response, known as sepsis, is the third most common cause of death in U.S. hospitals and affects 1.7 million people nationwide each year, according to the Centers for Disease Control and Prevention (CDC). It’s also the most expensive condition, costing an estimated $62 billion annually in hospitalizations and skilled nursing care.
While diagnosing sepsis can be challenging, it is often treatable when caught in time. During the COVID-19 pandemic, as hospitals faced surges and staffing shortages, early diagnosis became even more difficult, says Steven Simpson, MD, a professor of medicine in the division of pulmonary, critical care, and sleep medicine at the University of Kansas in Kansas City, Kansas.
“Nosocomial infections, pneumonia, and urinary bladder infections went up during COVID,” Simpson says. “Many ICUs during COVID were staffed by non-ICU personnel… people who aren’t used to working in the ICU [and] not used to collecting the daily information you have to collect to make sure you’re avoiding infections.”
While sepsis-related deaths declined from 2000 to 2019 (thanks in part to the first Surviving Sepsis Campaign guidelines, which were published in 2004 and most recently updated in 2021), the mortality rates have recently increased from 277 per 100,000 people age 65 and over in 2019 to 331 per 100,000 in the same age group in 2021, according to the CDC.
In an effort to improve sepsis management, the CDC launched a new initiative in August 2023 aimed at supporting hospitals in creating processes that help identify and treat sepsis early.
Difficult to diagnose
With sepsis, time is of the essence. For every hour of delayed treatment, the risk of death increases by between 4%-9%. Experts say that 80% of sepsis deaths could be prevented if treated in time.
But making a diagnosis can be challenging because the symptoms of early sepsis can be similar to other serious conditions, including heart attack or stroke.
“The biggest delay [in treating sepsis] still is diagnosis,” says Simpson, who serves as the chair of the board of directors for the Sepsis Alliance, a nonprofit organization focused on improving sepsis care. “Sepsis can be obfuscating and confusing. [The patient] comes into the ER and the presenting feature is, ‘I don’t feel so good.’”
“If we had a single test that identified sepsis it would make it much easier,” adds Mitchell Levy, MD, chief of the division of critical care, pulmonary, and sleep medicine, and a professor of medicine at The Warren Alpert Medical School of Brown University in Providence, Rhode Island, as well as a founding member of the Surviving Sepsis Campaign. “I think to date, in 2023, there is no single test that really identifies sepsis with 100% certainty.”
Some common symptoms of sepsis include: temperature is high or low; there are signs of infection; the patient is exhibiting mental decline and confusion; and the patient reports being extremely ill, with severe pain and/or shortness of breath. More than 87% of sepsis cases originate outside of the hospital, so when a patient comes into the emergency department, physicians often face a mystery to solve quickly; this can lead to delaying appropriate treatment if other serious conditions are suspected before sepsis is determined to be the immediate threat.
In Duda’s case, she had postponed seeking emergency care, in part because she did not realize the severity of her condition. When she finally arrived at the hospital, the emergency physician was able to determine that her report of hip pain was a red herring. She had been taking prednisone to treat another chronic medical condition and the medication had masked the crisis in her gut, where the infection originated. If her physician had not quickly ordered the CT scan that revealed the perforated colon, the result may have been quite different. It might have been too late to treat her with emergency surgery to stop the source of the infection and aggressively treat it before her organs shut down.
Treatment and recovery
Simpson’s opinion is that it is better to treat a potential case of sepsis sooner rather than wait for absolute certainty. He understands some physicians are hesitant to do so because they don’t want to unnecessarily use antibiotics, as overuse or misuse can create antibiotic resistant bacteria. But, in his view, the risk of losing a patient to sepsis outweighs the risk of fostering antibiotic resistance, especially if the physician is careful to cease antibiotics if it’s later discovered that an infection is not causing the patient’s symptoms.
In the most recent Surviving Sepsis Guidelines, released in 2021, the recommendation is to ensure that every patient that is in septic shock, or shock that might be septic, receives antibiotics within one hour – a change from previous guidelines that said antibiotic administration should begin within three hours.
“You can’t treat sepsis without antibiotics, so you have got to do everything in your power to preserve the antibiotics. It’s a two-edged sword,” Simpson says. “Who we are trying to reserve antibiotics for is people with life-threatening organ dysfunction. You have to constantly think about both things.”
For Duda, 61, surviving sepsis was the beginning of a long and difficult journey toward recovery – one she’s still on more than two years later. After the surgery to repair her colon, she spent a week in the ICU, followed by another week in the hospital in a step-down unit. She was then discharged to a rehabilitation hospital, where she spent three weeks in intensive physical therapy learning how to walk again. For months, she experienced extreme exhaustion and weakness, as well as anxiety and depression. She worried that every doctor’s visit would reveal another life-threatening condition.
Duda experiences Post-Sepsis Syndrome (PSS), which affects about 50% of sepsis survivors and is more likely to impact older patients and people with chronic medical conditions, according to Sepsis Alliance. Still, sepsis can affect people of any age, and as many as 44% of pediatric sepsis survivors experience cognitive difficulties even after recovery.
Among the new additions to the Surviving Sepsis Guidelines, which Simpson helped update, are recommendations for post-sepsis care protocol. The protocols were developed during the height of the COVID-19 pandemic to treat patients post-infection, and the multidisciplinary approach proved helpful for people with PSS.
At the University of Michigan, Hallie C. Prescott, MD, MSc, has led the way on research into post-sepsis care. Her research has shown that sepsis survivors often have higher hospital readmission rates and new health conditions. Her work focuses on how post-septic patients should have ongoing follow-up care to help address new medical issues and cognitive difficulties arising from sepsis.
Processes save lives
While research into the specifics of how best to treat sepsis is ongoing, data supports the idea that having dedicated teams and adherence to formal guidelines to screen for and respond to sepsis can drastically improve outcomes.
At the University of Kansas, Simpson led the hospital’s efforts to track certain measures for sepsis, such as early detection and length of time before antibiotics were administered. This was before the Centers for Medicare & Medicaid Services (CMS) started requiring hospitals that receive federal funds to report on these same measures. When the University of Kansas Health System first started tracking this data, it found that there was a 49% mortality rate for patients with sepsis. Now, the mortality rate for patients who come into their emergency department with sepsis is 5%, Simpson says.
“We [moved] that needle by training everyone in the hospital,” he says.
According to Levy, the prevalence of sepsis teams is a relatively new phenomenon, but it has come a long way in recent years.
“Almost every hospital in the U.S. has some kind of sepsis program, academic hospitals more than others,” Levy says. “Because you have to train students, residents, and fellows, you have more of a responsibility to stay up to date and to have the highest level of knowledge about the medical literature.”
According to the CDC, 73% of hospitals have a sepsis committee, but only 55% of hospitals provide dedicated time for sepsis program leaders to focus on sepsis protocol in their hospitals. That’s why the CDC created the new Hospital Sepsis Program Core Elements as a guide for hospitals to bolster their sepsis programs.
Levy would like to see CMS and CDC require that hospitals, in addition to reporting on their sepsis measures, that they also mandate compliance with the guidelines.
“Mandating something is so much more likely to improve outcomes than asking for it to be voluntary,” he says.
And for the sepsis care teams to work effectively, it’s essential that each has buy-in from a physician, a nurse, and an administrator, or else the program is likely to lose resources to other hospital priorities, Simpson says.
Simpson also emphasizes the need to educate medical students as early as their first year to look out for the signs of sepsis.
As Duda continues to recover from her near-death experience, she has chosen to partner with Sepsis Alliance to tell her story to a variety of audiences to increase awareness of the signs and risks of sepsis. She hopes that the general public will take sepsis seriously and seek emergency care, but she also aims to encourage physicians — and aspiring physicians — to be quick to consider sepsis as a possible diagnosis.
Says Duda, “When it’s all said and done, anyone of any age and any health status can develop sepsis.”