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Why scary stories about sepsis could lead to some unintended harms

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Mary Chris Jaklevic is a reporter-editor at HealthNewsReview.org. She tweets as @mcjaklevic.

Eleven-year-old singer Jessica Hale is promoting awareness of sepsis, which mainly strikes the elderly.

There’s no shortage of frightening news about healthy young people suddenly felled by sepsis, a condition in which the body’s immune system goes into overdrive in response to an infection.

Never mind that most people who get sepsis in the U.S. are older adults, and that others at high risk include infants, women giving birth, and people with weakened immune systems or chronic illnesses such as diabetes or cancer.

Some news outlets love stories that show how anybody can fall victim:

The idea that we should all be alert for sepsis is nurtured by advocacy groups like the U.S.-based Sepsis Alliance, which promotes Sepsis Awareness Month every September with ribbons, social media messaging, and “Sepsis Challenge” 5K events. Its motto: “Suspect Sepsis. Save Lives.

The alliance chose 11-year-old America’s Got Talent finalist Angelica Hale to help publicize common signs of sepsis. Hale developed sepsis from a lung infection when she was 4.

In Britain the UK Sepsis Trust has been raising money based on a storyline in the popular soap Coronation Street, in which a 7-year-old loses a leg after cutting his knee.

The charity said the plot, which it had a hand in developing, “reflects the life and death battle of a quarter million people in the UK,” and sepsis “can arise from something as innocuous as a small cut, insect bite or urine infection.”

Awareness advocates stress that sepsis is a leading cause of death, and should be treated as a medical emergency. They urge patients and their families to be on the lookout for symptoms — which can include fever, confusion, and extreme discomfort or pain — and to seek medical attention if they suspect sepsis, asking: “Could it be sepsis?”

Advocates point out many people still don’t know what sepsis is or how to recognize it, an rapid treatment has been shown to reduce deaths. They liken recognizing the signs of sepsis to recognizing the signs of heart attack or stroke.

Sepsis shouldn’t be a top worry

However, several HealthNewsReview.org contributors expressed concern that scaring the public with misleading portrayals might do more harm than good by encouraging a lot of people to seek tests and treatments they don’t need. The crux of the problem is that sepsis is difficult to diagnose, and many people who don’t actually have sepsis get treated for it as a precaution.

There’s no evidence that public awareness campaigns — as opposed to efforts to educate clinicians — reduce the harms of sepsis from deaths, tissues damage, and lost limbs.

Worrying about sepsis “doesn’t make a lot of sense from a public health standpoint.” said Preeti Malani, MD, a professor of medicine at the University of Michigan.

“For your average healthy person, among all of the things you need to worry about, especially for kids, sepsis shouldn’t be in the top 10,” she said.

Vigilance can lead to downstream harms

To be clear, no one is advocating against the early diagnosis and optimal treatment of sepsis, which the World Health Assembly declared a global health priority in 2017. The assembly called for a variety of clinical and public health measures to prevent, identify and treat suspected sepsis.

Yet the experts we talked to called for a more balanced public discussion that includes the risk that focusing on early intervention can lead to unnecessary tests and treatments — including the provision of antibiotics — that cause major harms.

“I see kids die from sepsis a lot, so you don’t want to be pejorative about those concerns,” said Alan Schroeder, MD, a professor and researcher who focuses on pediatric critical care at Stanford University’s medical school. “But I don’t think we are comprehensive in our assessment of the potential downstream effects of being more vigilant.

A cute kid makes a better poster child

It’s easy to see why stories about young people gain traction.

“A cute 11-year-old girl makes a better poster child than a 90-year-old nursing resident with dementia that stopped talking and walking two years ago, although the latter is a much more common sepsis victim,” said Mayo Clinic Health System internist Edward Ward, MD, via email.

Focusing on young people appears to be the latest strategy to draw attention to sepsis. We’re previously written about the likening of sepsis deaths to victims of plane crashes.

Awareness campaigns are backed by industry

It’s worth noting that one force behind these alarming messages are companies that profit from increasing the pool of patients who must be tested, case-managed, and treated.

Eli Lilly’s sponsorship of the “Surviving Sepsis” campaign to promote the drug Xigris — which was pulled from the market after a clinical trial found it was not beneficial for patients with sepsis — is one example of why we need to be cautious of industry-backed messages.

While the Sepsis Trust doesn’t disclose its funding sources as far as we can tell from its website, the Sepsis Alliance acknowledges funding from at least 11 companies that sell diagnostic tools, monitoring systems, and drugs for sepsis. They include such companies as Merck, which sells disease management software for sepsis, and diagnostics maker BioMerieux.

Sepsis is difficult to identify

Often downplayed in these news stories and campaigns is that sepsis is difficult to identify. Early symptoms can be subtle and resemble those of common conditions like the flu, and there’s no definitive test for it. Instead, doctors often rely on detecting pathogens in the blood, which takes time and doesn’t render conclusive diagnoses.

Yet guidelines call for sepsis to be treated rapidly with a cocktail of strong intravenous antibiotics along with fluids. Advocates say there’s a “golden hour” in which treatment should begin.

As a result, many people are given antibiotics before blood tests even confirm that they might have an infection. The result is rampant overdiagnosis — that is, identifying patients as having sepsis when they don’t.

Giving unnecessary antibiotics can lead to a host of harms, including side effects such as diarrhea and in rare cases can lead to life-threatening allergic reactions. They can also cause potentially deadly C. difficile gut infections. Patients are also at risk of other harms that can happen when you’re in a hospital.

Moreover, the overuse of antibiotics leads to the development of resistant superbugs that threaten public health.

Editorial draws attention to overdiagnosis

This month a JAMA editorial by three doctors drew attention to the harms of aggressively treating possible sepsis. It cited data suggesting that less than 60% of patients admitted to intensive care units with a diagnosis of sepsis are confirmed to have a likely infection.

“Occasional missed diagnoses of sepsis culminating in tragic outcomes have been highly publicized, but overdiagnosis is far more common,” the editorial said.

The editorial raised questions about the validity of research that links treatment delays to higher mortality, and urged restraint in treating patients who don’t exhibit signs of probable bacterial infection or septic shock, the most severe form of sepsis.

Most fevers aren’t sepsis

Alarming media messages may cause patients to push for tests and antibiotics, and doctors may feel compelled to oblige.

Schroeder said he worries parents might rush to the emergency department to have their kid checked out even though the vast majority of childhood fevers are caused by viral illness that present no risk of sepsis. He said a few years ago, he and some colleagues invited medical trainees from around the country to submit stories about children being harmed from unnecessary care, which were shared at an Academic Pediatric Association meeting.

“The majority of these stories involved harm from either overzealous evaluation or treatment of infections (or) possible sepsis,” he said.

“Increased awareness and attention to possible sepsis will mean identifying a lot of kids who have viral infections who don’t need the antibiotics, who don’t need the blood culture, and who don’t need the fluids,” Schroeder said.

Fear can lead to an ‘avalanche’ of tests

Even unnecessary testing can lead to harms.

University of Pennsylvania radiologist Saurabh Jha recalled a patient who went to the emergency room after looking up his flu-like symptoms on the internet. Fear of sepsis led to a chest x-ray that showed possible pneumonia, which can lead to sepsis. Jha said that triggered an “avalanche” of other tests — a chest CT scan that showed a small nodule on his adrenal gland, followed by an MRI, and a second MRI six months later.

The man did not have pneumonia or sepsis, and the nodule turned out to be benign.

“Dr. Google is not helping matters,” Jha said.

What does better coverage look like?

Some of our experts suggested ways that news stories about sepsis can do better:

  • Refrain from alarming people about common and generally safe activities, like trying on shoes or cuddling with a dog.
  • Mention the potential harms of pervasive antibiotics use, both to the individual patient and wider public health.
  • Provide actionable information on how to prevent sepsis, like getting vaccinated, washing your hands, and properly cleaning wounds.
  • Provide accurate information on who’s most at risk. For example, it’s estimated that about two-thirds of people in the U.S. with sepsis are older than 65.

News organizations can also do a service by casting the spotlight on institutions that fall short in prevention, such as a story by Kaiser Health News and the Chicago Tribune documenting how thousands of senior citizens died from sepsis as nursing homes failed to prevent bedsores.

Pushing the idea that’s it’s always beneficial to detect a serious condition as early as possible — and treat it — can backfire. Schroeder drew an analogy with cancer screening, which has often been found to hurt more people than it helps.

“When these campaigns get started, everyone gets really excited about it,” Schroeder said. But at this point, “We just don’t know what the downsides are.”

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Lallie Wetzig

October 8, 2018 at 7:57 pm

I disagree with this article. One morning in June everything was normal. I ate breakfast, worked on the computer, did a little housework. All of a sudden I felt I was going to throw up and was overcome by a horrible, strange feeling like no other I’ve ever had. I told my husband I needed to get to the emergency room. Luckily they realized I was very ill and quickly admitted me and started antibiotics. I was there for 4 days and only allowed to leave when the bacteria was no longer in my blood. Seems the sepsis was caused by ecoli bacteria. A few days later I read an article in the New York Times about a woman whose doctor had told her she only had the flu. She had sepsis and had to have both her arms and legs cut off. Thank goodness that didn’t happen to me. Doctors discuss strokes and heart attacks; they should also tell people about sepsis.

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    Mary Chris Jaklevic

    October 9, 2018 at 8:02 am

    Thanks for sharing your story, Lallie. The blog post does not say that doctors should refrain from telling people about sepsis. Our point is that news organizations should not portray sepsis in a way that exaggerates the risks.
    Also, I tried to find the Times story you referenced. Is it this one, about a woman who had undiagnosed strep throat? A Quadruple Amputee’s First Vow: To Walk Down the Aisle If not, please provide a link.

    Reply