A Matter of Life and Death: How States Are Tackling Sepsis as Public Policy

ROBERT JOHNSON:
This is Public Health Review. I'm Robert Johnson.

On this episode: raising awareness of sepsis with education and advocacy.

DR. ANTHONY FIORE:
It's sort of a call to the research community to make sure that they're aware of better tools to diagnose sepsis and a better understanding of what the best treatments are.

DR. HOWARD ZUCKER:
The other states need to figure out how the model in place works for us; and then, for us to be collaborative, and we are—with ASTHO, as we have on so many other issues, we work together, and we share what we learned in one state with other states. And I think that that's probably one the best things that we can do as advocates for patients, and also as well as commissioners and health secretaries.

CIARAN STAUNTON:
We had never heard of sepsis and most Americans had never heard of sepsis although, at this stage, it was killing at least a quarter of a million Americans every year. At the time, the hospital we were sent to did not check for sepsis. But had we gone to a hospital up the road, they had sepsis protocols in place and would have checked.

It shouldn't be the luck of the draw when you are going down with your child in the evening—or your loved one—to a hospital, that one hospital has sepsis protocols in place and the other does not.

JOHNSON:
Welcome to Public Health Review, a podcast brought to you by the Association of State and Territorial Health Officials. With each episode, we explore what health departments are doing to tackle the most pressing public health issues facing our states and territories.

Today, we explore one state's reaction to a boy's untimely death from a condition that takes hundreds of thousands of lives in the U.S. each year, but is little known by its name—sepsis. Sepsis is a life-threatening medical emergency caused by the body's extreme response to an infection. In 2014 alone, the CDC says 1.7 million Americans got sepsis and, of those, nearly 270,000 died.

In 2012, a twelve-year-old boy in New York State, Rory Staunton, got a scrape playing basketball. It got infected, worsened, and led to sepsis. The signs and symptoms of sepsis were missed by every one who treated him and, in a matter of days, it took his life.

Soon after, driven by grief, his parents launched a campaign and, with the help of the New York State Department of Health and the state's governor, new regulations for hospitals to identify and treat sepsis were adopted and implemented.

Dr. Howard Zucker, New York State's commissioner of health, joins us to discuss the changes known as Rory's regulations. Ciaran Staunton is Rory's father and a director of a foundation created to save other children from Rory's fate. He and Dr. Zucker will be along shortly.

But first we hear from Dr. Anthony Fiore, the chief of the epidemiology research and innovations branch within the division of healthcare quality promotion at the Centers for Disease Control and Prevention.

FIORE:
We developed in the past couple of years—along with partners—a national educational effort, which we call "Get Ahead of Sepsis."

It emphasizes the importance of recognizing when an infection is becoming sepsis or could be becoming sepsis and making sure that practitioners at all levels—those who see patients in any form, not just the physicians—are able to recognize when they need to sort of raise their hand and say, "This could be becoming sepsis," to think about the various treatment options that are available to them and the diagnostic options they need to put it into play.

JOHNSON:
Can you tell us a little more about what the campaign involves, what kind of materials are available?

FIORE:
Right.

We have a number of materials available on our website. People might see these materials in public places getting posted. We're working with professional societies to make sure it gets out to healthcare professionals.

We're interviewing patients or families and professionals about ways that they think would resonate with their membership or their sort of demographic, that would really help people recognize when sepsis is occurring, because we are still thinking about how can we better help people to recognize this.

JOHNSON:
How long have these tools been available and are you getting a good reaction from the medical community to those tools?

FIORE:
Yes, we're getting a good reaction. I think it's the result of the careful work that our health communications group has done with the various medical organizations.

The "Get Ahead of Sepsis" campaign is about three years old now. It's continuing, we're continuing to expand to other medical professionals. We started out thinking about the emergency room doctor type, urgent care provider folks. But now, we are making sure that other people who see patients who are at risk for sepsis—that includes other medical personnel, people who are at-home health aides or people who work in a nursing home—making sure that they also have access to the materials.

JOHNSON:
And that's because this problem, while anyone can get it, does tend to affect some populations more than others?

FIORE:
Yeah, that's right. And I think one of the things that you had mentioned earlier is sepsis can be difficult to recognize.

Sometimes people who are seeing a patient on a regular basis are the best ones to realize, "Hey, this is something different. You know, I've seen this patient before with an infection. This is worse than usual," and that can be hard for somebody who is seeing a patient for the first time.

And that's why we're making sure that families, home healthcare providers, and people who are taking care of patients on a regular basis are fully aware what the signs and symptoms of sepsis are and especially aware the need for urgent action.

JOHNSON:
There's a toolkit that's available for anybody to use in those settings, but I don't think we know enough about that.

I would like to have you tell us more about what's in the toolkit that people can access, how they get to it, and what they do with it.

FIORE:
The tool kit is primarily intended for hospitals and healthcare systems to track how their sepsis patients are doing, and it takes advantage of the ability to look at electronic health records in a large-scale way—which we've only had in the past decade or so—and be able to track the healthcare and outcomes of patients who have had sepsis.

It's really meant for the medical professionals that are tracking within their own hospital or healthcare system. And it describes a method of doing this, it gives examples of the sorts of code that is required to back this data from these electronic health records, and then offers up a variety of different ways to help interpret the data. And it's the same methodology we use to make the national estimates.

JOHNSON:
You are trying, through the tool kit, to get better data so that you can turn that around in terms of guidance and solutions for people who are on the front lines?

FIORE:
The tool kit is meant for evaluation at the hospital or healthcare system-level so we're gathering the data in a consistent way across the country from users of the toolkit—partially because hospitals see all different types of patients. Some hospitals see very sick patients, some don't. And so, comparing across the hospitals at this point is probably not feasible.

But within a single hospital or within a healthcare system, they can track their progress over time. And that that's the purpose of the tool kit, to allow hospitals and the healthcare systems to do that.

JOHNSON:
Our audience is primarily public health practitioners around the country and the territories.

What can they do to help support the CDC's work and, in the end, reduce the number of cases around the country?

FIORE:
So, we think the "Get Ahead of Sepsis" campaign is increasing public interest in healthcare, professional interest in sepsis.

State health departments can work with their local healthcare organizations to provide them with information about sepsis and also think about the things that they do on a regular basis as being sepsis-prevention or early recognition in addition to what they traditionally think of as something like vaccination.

Vaccination is a great example. Vaccination prevents infections, and these infections can lead to sepsis. So, vaccinations can be thought out as one way to prevent a person being at risk for particular kinds of sepsis.

And the same thing goes for improving care for chronic medical conditions. People who have diabetes require intervention and instruction from the state health departments—they can be thought of as sepsis prevention and early recognition tools, as well as working on providing better diabetes care. Just one concrete example.

JOHNSON:
CDC has the national educational effort "Get Ahead of Sepsis." You've got the hospital tool kit to improve surveillance.

What else are you working on in this area to improve the identification of sepsis and the response to it going forward?

FIORE:
Well, we're continuing to work with our partners to think of other ways that we can raise awareness. We're collecting data on sepsis—again, using that hospital toolkit methodology, we hope to provide additional national estimates of sepsis in the adult cases.

We also are trying to better understand how we can use that same sort of methodology to identify and conduct surveillance for pediatric patients, for children with sepsis. The number of children who have sepsis is much less than the adults, but they might have some unique signs and symptoms that we need to better be able to recognize and educate providers.

JOHNSON:
Finally, as the leader of this effort within the CDC speaking to the states and territories now through this podcast, what's your call to action related to this notion of getting sepsis under control, reducing its impact, saving more lives?

FIORE:
We're the Centers for Disease Control and Prevention, so the first thing we think about is preventing infections. State health departments and local health departments are really critical in that sort of work.

We also think that people more and more turn to their state and local health departments for healthcare information, and that including sepsis when one talks about infection prevention, or prevention recognition, or better care for chronic conditions for people who are at higher risk for sepsis, to incorporate sepsis messaging into that same sort of educational campaigns.

JOHNSON:
Are there any goals that you've set in terms of reducing the number of cases of sepsis over the next year, five years, 10 years?

Is there any planning or objective that's been laid out along those lines?

FIORE:
We haven't set a specific goal at CDC. There's a great deal of interest and concern about sepsis at the federal government level, and we will see more and more attempts to defines what our objectives and goals should be for improving sepsis care and sepsis prevention. I think you'll see that over the next couple of years.

It's a very challenging issue. I think we're still looking for the best options to try to reduce the toll of sepsis; but over the next few years, I think you'll see much more about this at a federal level.

JOHNSON:
New York State took action after Rory Staunton's death, enacting new policies that aim to ensure patients across the state are screened for sepsis early enough to treat their infection.

Dr. Howard Zucker is the New York commissioner of health. He explains the state's efforts to attack sepsis.

ZUCKER:
Rory Staunton's law went into effect in 2013, 2014. So, by 2014, every New York State hospital—teaching hospitals—that provides care for patients with sepsis or septic shock were required to implement an evidence-based, evidence-informed sepsis protocol, and that would allow them to approach this problem from early recognition as well as treatment of patients who've come in.

And so, we asked the hospitals to develop protocols both for adults and children—so adult and pediatric protocols—and we issued a document, a guidance document, on what elements should be contained that would allow the hospitals to find their approach to sepsis. And we felt, at least, that the hospitals would have a greater acceptance, a greater buy-in, if they were engaged in the process.

So we brought in the hospitals, and we spoke with them, and we worked with the associations, and we came up with protocols about what needs to be done within the first few hours, essentially, if someone gets infected, which includes blood cultures, broad-spectrum antibiotics—and what that means is antibiotics that can cover different organisms, because you don't know initially which organism it is, that's why we go with broad-spectrum antibiotics—and then also a measurement of something called lactate or lactic acid—and so, when your body starts to have an infection and tissues start to be stressed and tissues break down, lactic acid gets built up, and that has been shown to be a good indicator that there something happening early on.

So, the hospitals were required to report the data to my department, and then we used that data to evaluate the individual hospital's performance on the treatment and protocols that were putting in place, how the patients did as well.

JOHNSON:
Are physicians also included in this process somehow?

ZUCKER:
When we put this forward, everyone was involved. This is a multidisciplinary team and we recognize that collaboration was essential to be able to shift the trends of sepsis and septic shock in the state. So, there was an advisory group of clinicians from the state, both in pediatric as well as adult medicine, to take look at this thing.

And we partnered with all the experts across the United States to help develop a data base for this. And in fact, a couple of years ago, I was at a conference in Philadelphia and I was in the audience. And one of the speakers, who was from Pennsylvania, was talking about New York State's sepsis guidelines and how it has been transformational for not just New York but for the rest of the country.

JOHNSON:
When you are doing your evaluations, though, those are focused on the hospitals rather than doctor's offices?

ZUCKER:
Correct, right, correct.

Because it is focused on the hospital as people come in because when you think about it, they're getting blood cultures and some of the antibiotics, that's a treatment that is necessary. So, in the doctor's office they may recognize it, but then they're going to need to call an ambulance and send someone to the emergency room, and the clock starts ticking at that point to make sure that those protocols are met.

JOHNSON:
Over the years, have there also been included awareness campaigns or efforts to educate everyone from the general public all the way through to the, you know, the hospital treatment process?

ZUCKER:
So, this is how a multidisciplinary team has been helpful in this effort.

So, there has been an education awareness campaigns not just from the state, but also from the Rory Staunton Foundation themselves, Rory's parents, getting the message out. I have spoken with my fellow health divisions about this, and also this has been raised at the World Health Organization, which has a base not just that a national level in the United States, that will raise this at the international level as well.

Part of the challenge here is that I don't think people recognize how many Americans will develop sepsis each year and how many will die. So, if you have a three-quarter of a million Americans getting septic and have 100,000, 200,000 dying as a result of this—these numbers are high.

And that's more than—as the Staunton foundation wants to put on a poster—more people annually than a combination of breast cancer and prostate cancer and AIDS. We need to combine all of them. So, there's a lot of people who suffer from this problem. And in the New York, about 50,000 people are hospitalized with the sepsis or septic shock, and a third of those have died.

JOHNSON:
Since you've made the changes, though, have those numbers dropped?

ZUCKER:
What our efforts are to decrease the mortality by 50%, and since we started this initiative and went to work with, as we talked about, the hospitals and the treatment protocols are in place, we've had a decline.

The in-hospital mortality rate with sepsis declined from about 30% down to a little under 25% from 2014 to 2018. And so, it went from 30% basically down to 25% in the course of four years. And that's about a 15% reduction in the adult mortality.

But we keep pushing to make more progress with it. It really does require that we just tackle us on a continuous basis and address it with as many people as possible.

And so, the 30-day—and there's some more numbers of sepsis, 30 days in a hospital with sepsis—mortality is also going down. So, that's gone down from 30% to under 23%. So, we keep moving forward on this.

Our goal is to basically reduce this by 50%. And as you mentioned, a lot of it is education and also having people think about this problem. And, you know, as a physician, my feeling about this is that often people do not think about this because it doesn't fall within what they expect.

Let me explain that. If someone says they're having chest pains, they're sent to cardiologists. If they have wheezing, call the pulmonologists. I can go down the list, right? If their blood sugar is off, their glucose, it's like, well, it's diabetes. Or if they have a seizure, call the neurologist.

But sepsis is not like that. It is the common pathway, as I mentioned, to so many different things. So, who is it that you're calling, right?

And so, a lot of times people aren't thinking of this multi-system disease process, which is a multi-organ system disease, which is sepsis. And by the time people recognize it, it has often moved relatively quickly and they don't recognize until it's too late.

JOHNSON:
So, based on your experience and success with this effort, what is your message to your colleagues in the other states and territories if they've not yet had the opportunity to either talk to you about it or pursue this sort of protocol in their own jurisdictions?

ZUCKER:
The other states need to figure out how the model in place works for us; and then, for us to be collaborative, and we are—with ASTHO, as we have on so many other issues, we work together, and we share what we learned in one state with other states. And I think that that's probably one the best things that we can do as advocates for patients, and also as well as commissioners and health secretaries.

JOHNSON:
Ciaran Staunton is Rory's dad. It's been seven years since he lost his son to sepsis. The pain has not gone away, but so too remains a father's deep love and pride for a boy who was making the most of life before he died.

STAUNTON:
Rory Staunton was a fine young man.

Although he was only 12 years old when he died, he had a very social conscious. He had debated for several rights associations, he had traveled to Washington, he had met President Obama and Vice President Biden, he had traveled most of America, he had traveled to Ireland. He was very progressive minded, leading schools debates on the issue of civil rights and rights for the underprivileged.

He was a fine young man.

JOHNSON:
And he was also an athlete.

STAUNTON:
He was also a basketball player. He liked to play basketball. He was five foot nine when he died. He was a tall boy—he was 12 years old but already five foot nine. He liked a bit of basketball, and he did some running in school, also, before that.

JOHNSON:
And it was a basketball game where this whole thing started, wasn't it?

STAUNTON:
It was, indeed. He was playing basketball inside of the gym at the school and dived for a ball and cut his arm, his elbow. And from there, went on to the coach, who didn't send him to the nurse and said, "Put a Band-Aid on it"—which kept the infections inside of the wound—instead of sending him in for treatment to the school nurse.

JOHNSON:
The problem here is that, from that moment on, things just started to move really fast in the wrong direction.

STAUNTON:
Yes, all in the wrong directions.

Rory came home that evening. He had the cut and Band-Aid on it and all was fine. And then, that night, he started throwing up.

We bought him to, the next day, to his pediatrician, who just said that he needed to rehydration and sent him off to the hospital to get rehydrated. And they did some tests and then we checked him out.

By Friday evening, he was back in the hospital again with massive problems, and then he was dead on Sunday evening at six o'clock.

JOHNSON:
This is such a horrible loss, a thing to have to relive over and over again in talking about it.

But you and your wife have been committed since then to the awareness of this issue, trying to make other people aware of sepsis and what's going on.

Can you tell us a little bit about what you decided to do after he passed away?

STAUNTON:
Well, when Rory died, we had never heard of sepsis and most Americans have never heard sepsis. We went onto the CDC website and onto some other sources, and they didn't have anything out about sepsis, although at this stage it was killing at least a quarter of a million Americans every year and it was costing 23 billion a year in treatment in hospitals.

So, we decided there was nothing out there going on and that we would set up in an organization to educate Americans on sepsis and how we could do something about it. Because, at the time, the hospital we were sent to did not check for sepsis, but had we gone to a hospital up the road, they had sepsis protocols in place and would have checked.

One of the first things we did, then, was to meet with Governor Cuomo's office and meet with the health commissioners at the time and say, "Well, it shouldn't be the luck of the draw when you are going down with your child in the evening, or your loved one, to a hospital, that one hospital has sepsis protocols in place and the other does not."

So, we put in place the Rory Staunton Regulations for sepsis awareness, and that is now mandatory in the state of New York, along with some other states. And that has saved thousands of lives here every year. It shouldn't be the luck of the draw.

JOHNSON:
You worked with the state of New York on that.

Can you talk about that process—how it got started and how it ended?

STAUNTON:
Well, we started working with Governor Cuomo's office and we also met with Commissioner Shah, who was health commissioner at the time. And they all rightfully saw that it shouldn't be the luck of the draw, that nothing in this modern age should be when a loved one is being taken to a hospital.

And there's no other illness or sickness where one hospital may have one cure for it and another may have another way of dealing with it—one leads to your loved on dead and the other one can lead to save a life.

So, what happened was they got—the health commissioner signed mandatory sepsis protocols in place that all hospitals in New York State must have a process for dealing with sepsis. Now, today we know we have saved thousands of lives.

And what we have done is we've taken this campaign into other states—New Jersey, for instance, has similar protocols at the moment and we're looking at some of the states at the moment. Because it shouldn't be, in such a modern America, where between a quarter and a half a million Americans are dying from sepsis.

What we've shown in New York is that this need not be, that there's a way for a government or for officials to get in place and put something in place and say, "Now everyone is equal and children or loved ones need not go knocking on doors late at night to see what hospital might save our loved one or what hospital may not." There's a template now in place in New York that's saving thousands of lives. This template can be replicated across America.

JOHNSON:
And, as you mentioned, that's what you're trying to do.

You're talking to more than just a handful of states—you're talking to a lot of states, aren't you?

STAUNTON:
Yes, we are. We're talking to many states across the country, and each of those states we brought the New York template and said, "Here's what you have, here's what you can put in place, and, most importantly, here's what can save lives." And that goes from here to California, to the Midwest, to any state possible.

It is a very simple thing to do, not requiring legislation. It's direct from the health commissioner or the health secretary in that state. Put in place, this process will say, "Okay, everyone is equal at the moment, going out at night to a hospital or going out by day, young or old, everyone be seen and treated equally when it comes to sepsis."

Because there is no way that, in modern America, between 250,000 and 500,000 people are dying each year from something that is quite preventable—and saves a lot of money.

JOHNSON:
Can you explain, in layman's terms, what the protocols cover, what they involve?

STAUNTON:
The protocols are that the hospitals must put in place protocols for dealing with sepsis, put sepsis on their books, look at it and say, first and foremost, that 80% of the people who die from sepsis had it when they walked in the front door of the hospital. 80%. It's not just a HAI—or a hospital acquired infection. It is something that they get in the community, it is clear and very easy to detect when you're looking for it.

So, by ruling out sepsis, looking for it as you would other illnesses and ruling it out at the front door, as we might say in layperson's terms, they can then say, well, if they have it, they can put them on medications, put them on protocols, put them into a place for them to say, "Okay, we are starting a treatment."

Because once sepsis gets sent to the body, the body loses 8% per hour in severe sepsis. That means, after a certain time, it goes beyond saveable, and that's what happened to our son. That's happened to a quarter million Americans today, and even some of them, when they have been saved, are losing many limbs and have to be treated for the rest of the lives.

But the hospitals and the medical facilities have to turn around and show to the government, "Here's what we have in place and here's how it works."

JOHNSON:
These protocols aren't expensive. They don't involve technology. It's really just a screening tool that people need to have in their hands and that needs to be at the top of their list when a patient comes through the door.

STAUNTON:
It's true, because sepsis as easy to detect if you're looking for it.

It can be a fever, cold, it can be rapid breathing, some pain or discomfort, sometimes there may be mottled skin and elevated heart rate. So, when someone is looking on, as with other illnesses, when you are looking for it and say, "Well, could this be sepsis," then is it is very, very simple to rule it out. And if it is sepsis, you put them on a broad-based antibiotics and start treating them. Therefore, you have arrested sepsis.

JOHNSON:
Given what you've been through with the loss of your son, and then the resulting overhaul of policy in New York—now that's happening in a few other states, you hope to get it into all of the states—is there any comfort for you at this point, all these years later?

STAUNTON:
No, there is no comfort. Our son is dead. There never will be comfort.

There is nothing but agony, nothing but tears, nothing but anniversaries. His sister just started college this year—he should have started college two years ago. All the breaks, all the birthdays, the holidays, the Christmases.

Our beautiful young boy, whose life was quite savable, is dead.

There's nothing for us to say. That all our work is going on, it's just very, very difficult that we go day in, day out knowing that the wrong hospital on that night cost our son's life.

The luck of the draw that shouldn't be in the modern age, and our son would be alive today. A hospital two blocks up the street had sepsis protocols in place, and he would be alive today. They would have detected it at the front door.

JOHNSON:
For the public health officials listening, as they think about this infection and how deadly it can be. What is your message to them, your encouragement to them to get these protocols in place as soon as possible?

STAUNTON:
It's a no-brainer for anyone in the public health system. It's very easy to do, it's not a trial basis. We have shown in New York, it's been widely written about—Rory's Regulations in New York—and it's on our website, on the Rory Staunton Foundation website. And it can save lives.

The health commissioner in New York, government agencies, publications have written about it. The record is there. It's saving a lot of money, it's saving a lot of lives.

And at this stage, why should it be left to the luck of the draw to save a quarter of a million lives and $28 billion in medical costs in the United States?

JOHNSON:
You can find links to all of the resources mentioned in this episode in the show notes—this includes the CDC campaign resources, information about New York's approach, and the website hosted by Rory's Foundation.

Thanks for listening to Public Health Review. If you like the show, please share it with your colleagues.

And if you have comments or questions we'd like to hear from you. Email us pr@astho.org—that's PR at ASTHO dot org.

This show is a production of the Association of State and Territorial Health Officials.

For Public Health Review, I'm Robert Johnson. Be well.