Change Is Coming In The Fight Against Sepsis

This blog is a part of a series that the Centers for Disease Control and Prevention (CDC) launched to highlight the importance of patient safety by providing educational information and simple ways to help people stay informed on public safety topics. Read the blog below, authored by Orlaith and Ciaran Staunton, to learn more about sepsis and the importance of voicing your concerns as a patient.

On March 28, 2012, our lives changed forever. Our 12-year-old son, Rory, scraped his arm playing ball at school; four days later on April 1st, Rory died from undiagnosed, untreated sepsis—the body’s extreme reaction to an infection, which can result in tissue damage, organ failure, and death.

Tragically, not one of the multiple healthcare professionals who examined him diagnosed sepsis, despite his pain, fever, vomiting, rapid heartbeat, and mottled skin—all textbook signs and symptoms of sepsis. We later learned that in a typical year, sepsis begins outside the hospital for the vast majority, 87%, of sepsis patients and that at least 350,000 people in America who develop sepsis die during their hospitalization or are discharged to hospice. Many people who survive sepsis experience physical or cognitive disabilities after they are discharged from the hospital.

Our son should be 23 years old today, perhaps a college student, beginning his professional life, or insatiably curious as he was, traveling the world in search of new perspectives and experiences. Following his death, we founded END SEPSIS, the Legacy of Rory Staunton. It has become a leading sepsis advocacy organization responsible for major breakthroughs in how sepsis is addressed by medical professionals and healthcare policymakers.

The sepsis crisis will be solved when public awareness meets proactive healthcare policy; this is what we believe will drive patient safety. END SEPSIS engages in both of these efforts.

In 2013, END SEPSIS led efforts to make New York State the first in the nation to establish a statewide mandate requiring all hospitals to adopt sepsis protocols. Known as “Rory’s Regulations,” the legislation requires every hospital in the state to develop protocols providing for the rapid identification and treatment of sepsis. Last year, the New York State Department of Health announced that between 2015 and 2019, Rory’s Regulations saved over 16,000 lives.

The Regulations also included a “Parents’ Bill of Rights,” which ensures that parents and primary care providers receive vital information about children’s care, particularly by facilitating the communication of key tests and lab results. These policies would have saved my son’s life. When Rory was diagnosed with a stomach bug and then discharged, healthcare professionals had not reviewed his bloodwork results, nor had they shared them with us. Those results showed that he was gravely ill.

The remarkable success of Rory’s Regulations has cemented our belief that federally-directed sepsis policies will make the difference between life and death for millions of families. We have good reason to believe that the nation is moving in this direction. After many years of intense advocacy by END SEPSIS and its allies, the federal government’s fiscal year 2023 budget includes funding and directives relating to sepsis. It directs government agencies to study the economic and human toll of sepsis, filling critical knowledge gaps to effectively allocate funds and develop policy solutions moving forward.

It also requires the Centers for Medicare and Medicaid Services (CMS) and CDC to identify or develop quality measures for sepsis and directs the agencies to examine New York’s regulations as a possible model. These directives and the associated funding represent the first major shift in the federal government’s approach to sepsis and its first step toward addressing the overwhelming burden that sepsis places on families, the healthcare system, and the economy.

If you or your loved one is admitted to the Emergency Room for sepsis or has an infection that’s not getting better or is getting worse remember these steps:

• Inform the hospital of your primary care provider, and have the information documented on your medical record.
• Ensure that all test results completed during your Emergency Room visit be reviewed by a physician, physician assistant, or nurse practitioner who is familiar with your presenting condition.
• Ensure you or your loved one’s discharge does not take place until any tests that could reasonably be expected to yield critical value results are reviewed and communicated to you by a medical professional.
• Ensure you receive a written discharge plan that is also verbally communicated to you by a medical decision maker.
• Receive information about the diagnosis or possible diagnosed that were considered during your visit.
• Be provided, upon discharge from the hospital or emergency room, with a phone number that you can call for advice in the event that complications or questions arise concerning your condition.

To learn more about sepsis and how to prevent infections, visit https://www.endsepsis.org and http://www.cdc.gov/sepsis.

Orlaith and Ciaran Staunton are the founders of END SEPSIS, the Legacy of Rory Staunton.