First Published: Queens Gazette, March 4th, 2015
The North Shore-LIJ Health System announced that it received The Joint Commission and the National Quality Forum’s (NQF) 2015 patient safety award for its work since 2009 to lower sepsis mortalities.
North Shore-LIJ has created a system-wide, streamlined process for early diagnosis and treatment of the sepsis syndrome. Physicians, nurses and others have become more aware of the critical need for early intervention to halt and reverse the effects of sepsis.
Members of the health system have worked with the Staunton family, whose son Rory died from sepsis at a New York hospital, and the Institute for Healthcare Improvement to create a checklist of sepsis signs to better ensure patients are quickly flagged for this infection. “Rory’s Regulations” were issued by the New York State Department of Health in 2013.
According to the Sepsis Alliance, more than 250,000 Americans die of sepsis each year. With this program, the North Shore-LIJ Health System has been able to reduce its sepsis mortality by 50 percent.
“Between our research at the Feinstein Institute for Medical Research on sepsis to our focus on creating a comprehensive sepsis diagnosis process, the North Shore-LIJ Health System has taken the lead in efforts to prevent and diagnose this often fatal condition,” said David Battinelli, MD, chief medical officer of the North Shore-LIJ Health System. “We are grateful to the Staunton family, the Institute for Healthcare Improvement and the New York State Department of Health for their work on ‘Rory’s Regulations’. Patient safety is of the utmost importance to us, which is why we take sepsis so seriously.”
The award, the John M. Einsenberg Innovation in Patient Safety and Quality at the Local Level, will be presented during the NQF’s annual conference in March in Washington, D.C.
In the beginning of that day around 2005 in the Christmas time, I remember we arrived at their house in Queens to help with the tree trimming and enjoy the compliments of the season.It was cold outside and hot coffee and an Irish breakfast helped line our stomachs and prep us for the task on hand.
The little red headed boy had spread his train tracks all around the tree. Bobbing and weaving the tracks ran in and out, and a vintage old train steamed along whenever it didn’t come off the rails.The boy was already adept at fixing every little wobble on his track and explained excitedly that the train had been modeled on one from the old Indian railways. He explained in precise detail that India had an amazing rail system that he had been studying.
We took it all in as uncles and aunts and cousins do, would have stroked our beards if we had them and concluded what a clever little lad.
The tree itself was bare but soon as we began to dress it the Christmas lights sparkled and the ornaments, many from our childhood that my sister saved, went up one by one.Decorating the tree was like meeting a familiar friend a year later, reminding me of the bond that Christmas brought especially to emigrant families, transferring us across an ocean back to a time and place where seven of us children dressed a tree and our parents stood by.Here we were in Queens, New York, in the same ritual timeless as it was, knowing that bond that connected us for generations was renewed again by this very act.
My parents had touched these same Christmas ornaments now our kids were touching them. The great stream of life continued to flow.Back then the box holding the tree was full of old shoes to make sure the tree stood up straight as there was only a bare bark with no stand to secure it.It was the boy’s turn to place the angel on top of the tree and he did so as I and his father lifted him up remarking how heavy he had become from the previous year.
After that the bedraggled uncle was pulled aside by the boy to discuss the North star and the positioning that Santa would use .He indicated that light from the star was hundreds maybe thousands of year old and that we only saw it as it was back then.
How could Santa navigate with such uncertain lode stars, he asked me.
I had no clue but there was no escaping his keen intelligence, his eyes boring into me as the questions flowed about time travel and how Santa could make Australia and Europe in one 24 hour period. This conversation was about four years too early, I thought.I knew enough to say nothing merely to point out that Santa was capable of all things, and that I would not be surprised at all if he had a special magic to do all that.
The boy sat down with an extremely dubious look on his face and I escaped to gulp my first glass of red wine, welcome after the endeavors, physical and mental.
The boy was special; there was no doubting it. What he would become is impossible to say.
Your child or nephew is your ambassador to the future the person who will bear the memory of you when all have forgotten and carry it on to the next generation. That is incredibly important for us humans incapable of time travel that someone is there to tell the future generations who and what were, that we walked the earth, dressed Christmas trees and loved each other.
The boy would never get to carry that information or fulfill his incredible promise. He was dead a few years later killed in a case of dreadful medical malpractice that made it to page one of the New York Times for all the wrong reasons.
That house in Queens will be dark this year; no joyous sounds, no tree trimming. The family will instead be in Ireland to be near to where he was laid to rest with his beloved grandmother and grandfather. It is the toughest time of the year next to his birthday.
Rory Staunton, wherever you are, we miss you and love you this Christmas and forever.
Your Uncle Niall
I see Mr. President that you see fit to fly to Atlanta to the CDC this week to discuss Ebola and the recent children’s respiratory disease that has worried many parents.
While it is understandable that you are worried about an Ebola spread to the US and the international implications of the disease as well as a respiratory virus you are missing an important opportunity.
Sepsis is a far bigger killer than either and is always likely to be until someone like you, Mr. President, takes it on as a major public health priority.
Did you know, Mr. President, that sepsis kills more Americans than AIDS, prostate cancer and breast cancer combined and that it contributes to 1 in every 3 deaths in US hospital costing the U.S. economy $20 billion per year.
Mr President, you may not already know that the Dr. Thomas Frieden of the CDC on September 3rd said “that sepsis affects more a million Americans each year and kills up to half of them” and that a major conference attended by the head of the CDC will be held in Washington on Wednesday?
Did you know that unlike Ebola it is possible to prevent sepsis by the simple act of providing antibiotics and fluids when it is suspected?
No, we didn’t know either, Mr President, which is why I lost my beloved nephew Rory Staunton to the disease at just 12 years of age when emergency room physicians and his pediatrician failed to recognize the symptoms.
If doctors are not trained to see it what chance do the public have? A massive informational campaign would save hundreds of thousands of lives all across America, Mr. President if you lead the educational drive. It could be one of the great legacies of your administration, a major public health breakthrough.
Sepsis is a killer hiding in plain sight, yet it can be treated successfully if caught in time.
If parents, doctors and members of the public are educated to look for it it could make a profound difference to public health in America and indeed across the world.
If you lead that effort, Mr. President, there is a decent chance there will be no more heartbroken parents like my sister Orlaith and her husband Ciaran, The Flatley family who lost their beautiful daughter Erin or the Fitzgerald family in Arizona who lost their beautiful boy Tommy.
It is really rather simple Mr. President, education equals saving lives when it comes to sepsis. As a man who believes passionately in education in every sphere, can you lead that effort for us?
A grateful nation will surely thank you.
Board Member, Rory Staunton Foundation
Martin Doerfler MD and Kevin J. Tracey MD, speakers at the Rory Staunton First National Forum on Sepsis: Defeating the Killer, discuss the positive impact of the Forum.
“What happened today, in terms of galvanizing grassroots public advocacy support with the Government, with Congress with the CDC, represents a turning point that will be a milestone in the history of sepsis in this country, if not the world.” Kevin J. Tracey MD.
One evening in late spring, Ken Fitzgerald, a US Airways pilot, was on a layover in a hotel near Kennedy International Airport when people he had been in touch with by email and phone, but whom he had never met, called him. Would he like to join them for a burger?
At a bar called Molly Blooms in Sunnyside, Queens, Mr. Fitzgerald told his hosts, Ciaran and Orlaith Staunton, and their daughter, Kathleen, about his son Tommy: At age 9, he had the moxie to wear a top hat and a skinny neck tie to a talent show, pulling off a slick dance routine as he sang “Route 66.” At age 12, he ran a 5:40 mile. A few weeks after that, he raced around the bases on those same speedy legs for an inside-the-park home run at the 2013 all-star game for his Little League. A day later, Tommy felt a pain in his neck and was fatigued.
At the emergency room, medical workers drew blood and checked his spinal fluid, then sent him home. The following day, the blood tests came back with abnormalities, but somehow the phone number in the hospital records was wrong, so Tommy’s family did not know that he was seriously ill. The hospital put a letter in the mail. It did not matter: Tommy was about to go into shock from sepsis, an out-of-control immune response to a garden-variety infection. Rushed back to the hospital, he needed a ventilator to breathe. He lived 33 more days.
The Stauntons knew the outlines of this ordeal intimately. Two years ago, they lived it with their own son, Rory, 12. Vomiting, feverish and aching, he had gone to a doctor and then the emergency room at NYU Langone Medical Center. He got a bag of fluid, had blood drawn for tests. No one read the results until it was too late. Within days, Rory went into shock, was put on a ventilator, then died.
Both boys, it seemed, had gotten cuts that had become infected while playing ball.
This week, the Stauntons and Mr. Fitzgerald met again, this time in Washington for a forum on sepsis. Among others present who had lost family members to sepsis was Carl Flatley, a retired dentist from Florida. His 23-year-old daughter, Erin, went into septic shock and died after outpatient surgery in 2003. Dr. Flatley founded the Sepsis Alliance as a way to build awareness of sepsis as a medical emergency. At the forum, held on Wednesday and organized by a foundation the Stauntons created in their son’s name, it was clear they were making progress, using the strength of their combined grief to push boulders uphill.
It is likely that all hospitals will soon be required to improve their sepsis care if they are going to be reimbursed by federal health insurance programs: Dr. Patrick Conway, the chief medical officer for the Centers for Medicaid and Medicare Services, said that in a pilot study, 73 hospitals had been able to reduce deaths by sepsis by 10 to 40 percent. He expects the proven techniques to become national standards. “You’re talking about 27,000 to over 100,000 people going home,” Dr. Conway said.
The North Shore-Long Island Jewish Health System hospitals have reduced their sepsis mortality rate by 50 percent, Dr. Martin Doerfler, a vice president with the network, said.
There are simple and effective therapies for sepsis if doctors and nurses suspect sepsis before its rampage picks up speed. But although it affects more than one million people in the United States annually, half of whom die from it, sepsis until recently got little attention from public health leaders, including the Centers for Disease Control. That agency had no published material on it until the Stauntons hectored the centers’ director, Dr. Thomas R. Frieden, who spoke at the forum.
“Sepsis is not nearly widely enough known,” Dr. Frieden said, promising those present — including Senator Charles E. Schumer — that his agency would push ahead with educating the public and health care workers. He recalled that his own son, as an infant, contracted pneumonia and became septic but was treated in time.
“Between Erin in 2003 and Rory in 2012, three million people died of sepsis,” Mr. Staunton said at the forum. “Carl Flatley had never ever heard of it when his daughter died. We didn’t listen to him. I’d never heard the word.”
Mr. Fitzgerald, the pilot, said he, too, had never heard of sepsis until his son was in its grip. “There are plenty of days when it seems like the only thing you can do is roll up in a ball,” he said. “But that’s not what we’re doing.”
A version of this article appears in print on September 19, 2014, on page A22 of the New York edition with the headline: An Effort to Raise Awareness of Sepsis, Led by Families Touch
Rory’s parents, Ciaran and Orlaith, were featured on CBS News Wednesday Sept. 17, 2014, after the Rory Staunton Foundation Conference on sepsis. This First National Forum on sepsis brought together families, medical experts and legislators in a joint effort to defeat sepsis and raise sepsis awareness.
The Rory Staunton Foundation would like to thank North Shore LIJ, BioMérieux and The Erin K. Flatley Foundation for their support.
There are times when a single, unexpected death sparks a change in medical practice. In 2012 a 12-year-old boy named Rory Staunton died after being misdiagnosed in a New York City emergency room. Multiple physicians missed the symptoms, signs and lab results pointing to a streptococcal bacterial infection that led to septic shock and overwhelmed Rory’s body. The tragedy prompted New York state in January 2013 to introduce “Rory’s regulations,” a set of stringent protocols aimed at preventing similar incidents in hospitals.
Comparable initiatives to prevent misdiagnosis have not happened on a national level—but there might be reason to expect change soon.
New research my colleagues and I published in April in the journal BMJ Quality and Safety shows the extent of the problem. Based on previous studies of patients seeking outpatient care, we extrapolated data on diagnostic error to the entire U.S. adult population. Each year an estimated 5% are misdiagnosed based on currently available evidence.
This may sound like a decent track record—95% accuracy—given that doctors are grappling with more than 10,000 diseases in patients who present a staggering array of symptoms. But a 5% error rate means that more than 12 million adults are misdiagnosed every year, and our study may understate the magnitude.
Still, after years of taking a back seat to problems such as medication and treatment errors, misdiagnosis is getting attention. In 2011 my research colleague in projects on misdiagnosis Mark Graber founded the nonprofit Society to Improve Diagnosis in Medicine, which now holds an annual medical conference on diagnostic error. More recently, the Institute of Medicine, an influential branch of the National Academy of Sciences that advises Congress on health care, is preparing a comprehensive action plan and hosting its second major expert meeting on Thursday and Friday. In 2015 the IOM will issue a report on misdiagnosis.
Meantime, the U.S. health-care community can take steps to reduce the problem.
The first is to improve communication between physicians and patients. Patients tend to be the best source of information for making a diagnosis, but often essential doctor-patient interactions such as history and examination are rushed, leading to poor decisions. As new forms of diagnostic and information technologies are implemented, managing large amounts of data will become increasingly complex, and physicians could become more vulnerable to misdiagnosis.
This problem exists in large part because time pressures and paperwork often force physicians to spend more time struggling to get reimbursed than talking with patients. Extra hours spent pursuing a correct diagnosis are not compensated beyond the payment for the visit, an already small sum for primary-care physicians.
Patients can’t solve this problem, but insurers can streamline administrative paperwork and re-examine the logic behind reimbursement policies. Hospital systems can help by providing high-tech decision support tools and encouraging physicians to collaborate on tough cases and learn from missed opportunities.
Metrics also need work. As the old business adage goes, you can’t manage what you don’t measure. Yet most health-care organizations aren’t tracking misdiagnosis beyond malpractice claims. Doctors need mechanisms to provide and receive timely feedback on the quality and accuracy of our diagnoses, including better patient follow-up and test-result tracking systems.
Electronic health records will help eventually, but slow innovation in this area has frustrated many physicians. And most doctors still lack access to electronic patient data gathered by other physicians. Doctors can make a more informed diagnosis when they can see the disease progression or learn what other doctors have discovered about the patient.
Finally, patients must start keeping good records of each meeting with a doctor, bringing the information to subsequent medical appointments and following up with the physician if their condition doesn’t improve. No news from the doctor is not necessarily good news.
There is much we don’t understand about the burden, causes and prevention of misdiagnosis. The IOM report will spur progress, but health-care providers, patients, hospitals and payers can all help. The health outcomes of at least 12 million Americans each year depend on it.
Dr. Singh is chief of Health Policy, Quality and Informatics at the Michael E. DeBakey VA Medical Center, and an associate professor at Baylor College of Medicine.
CDC has taken the first steps – now will other national research centers and institutions follow? Just recently the Centers for Disease Control and Prevention (CDC) as a leading American health care institution, has begun to recognise sepsis as both a global and local issue. Hence the CDC has included sepsis in its famous A-Z List. This was made possible thanks to the relentless efforts of the Rory Staunton Foundation. The achievements finalised a long standing fight by outstanding people and organizations to establish sepsis in the USA for what it is: a major killer.
We have examined national research centers and leading institutions like the Robert Koch Institute (RKI) in Germany and found they also did not register sepsis in their A-Z lists. After contacting the RKI President Prof. R. Burger, who has also become an ambassador for WSD, the RKI is now working to improve sepsis information on their website accordingly. This type of information gap has far-reaching implications for all those who experience sepsis, as well as relatives and friends who search for answers – heightening insecurity, anger and misunderstandings. But it has an additional political implication. What is not recognised by national reference centers or institutions is not influential to a political body. The Chairman of the UK Sepsis Trust has been newly elected as adviser to the Guideline Development Group of the National Institute for Health and Care Excellence in the UK (NICE). This will bring sepsis into the national agenda of the National Health Service (NHS). In France representatives and sepsis experts of the Societé de Reanimation de Langue Francaise will for the first time mark World Sepsis Day with a national congress which will take place at the Institute Pasteur in Paris. This is only possible due to the efforts taken by single individuals or medically-driven organizations. Perhaps the leading national healthcare institute or research center in your country does not feature sepsis? As the above examples show it is possible to change this.
We would like to encourage you to check whether the national public health institute in your country lists sepsis in their A-Z list and informs adequately about sepsis. Please contact us at: firstname.lastname@example.org
National Forum on Sepsis: Defeating the Killer
Washington D.C., September 17th, 2014
Senator Charles E. Schumer Will Address the Forum as the Keynote Speaker
The Rory Staunton Foundation and North Shore- LIJ Health System have joined forces and will convene a panel of experts to explore the current failing methods of addressing sepsis care and share ideas for a fresh approach. The forum takes place at the Top of the Hill Conference Center in Washington D.C. on September 17th, 2014.
The Sepsis Forum takes place at the same time as a recent abstract was published in the Journal of the American Medical Association(JAMA) authored by leading physicians at Kaiser Permanente Medical Group and sepsis investigators from the Universities of Pittsburgh and Michigan which presented critical information not previously discussed.
The alarming new information shows that sepsis contributes to more deaths in America than previously recognized; in fact the authors concluded that sepsis contributed to 1 in every 2 to 3 deaths.
The majority of people who die from sepsis arrived at the hospital with the illness. Previously sepsis was believed to have been acquired in the hospital. This new information is critical to the general public because of the urgency required for individuals to recognize the signs and symptoms of sepsis and get treatment as soon as possible. In addition hospitals must now identify sepsis in their Emergency Departments and Physicians need to know the signs of sepsis when patients present with the symptoms.
Following on this, more people die from sepsis who present at hospitals in the early stages of sepsis than those presenting with advanced sepsis. The responsibility now lies with the hospitals to identify sepsis in the early stages and provide aggressive use of appropriate antibiotics in the early stages when lives can be saved.
Orlaith and Ciaran Staunton, Founders of the Rory Staunton Foundation, commented, “Our son Rory did not have to die. Sepsis is not being given the urgent recognition of a deadly disease and it has fallen under the radar screen in medical literature and with government agencies. We need to defeat this killer which claims over 258,000 Americans a year and is the biggest killer of children in the world. We are not waiting for a cure. We know we need to identify sepsis, make a diagnosis and treat appropriately and aggressively. No other parent needs to suffer as we do.”
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New York, NY – June 2, 2014 – The Rory Staunton Foundation (www.rorystaunton.com) announced that after months of unrelenting effort attempting to convince the CDC to acknowledge sepsis, it has garnered a significant victory.
After the unnecessary and untimely death of Rory Staunton at 12 years old on April 1, 2012, from complications of undiagnosed and untreated sepsis, his parents Orlaith and Ciaran Staunton immediately began investigating. Of course, their trusted source was the CDC website. To their amazement, the word sepsis did not appear in the list of illnesses. With a budget of $76 billion, not a penny was spent on sepsis.
The Stauntons met with Dr. Thomas Frieden, Director of the CDC in January with a loud and clear message. Sepsis kills and it is the CDC’s responsibility to let the world know. The Stauntons more than formidable war on sepsis was acknowledged by Dr. Frieden and action taken.
“We are grateful to Dr. Frieden for bringing light to the lurking killer – sepsis. Although it is too late for our precious Rory, we understand that he would want no other child to die from this killer due to lack of information and education,” stated Orlaith & Ciaran Staunton.
The Rory Staunton Foundation