Mary Newman Shares Her SCA Story: Challenges & Inspiration
A founding member of the Sudden Cardiac Arrest Foundation, and instrumental in the development of both the “Chain of Survival” and the “Call Push Shock” movement, Mary Newman has focused her career on raising awareness about the prevention and treatment of Sudden Cardiac Arrest (SCA). Mary speaks about the heartbreaking challenges and sources of inspiration she has encountered throughout the years on her quest to save lives and increase SCA survivorship.
In the early stages of Mary’s career it was almost unheard of for people to survive out-of-hospital Sudden Cardiac Arrest. The human factor has been both the most rewarding and the most heartbreaking part of her work. She still loves to meet survivors and their families, and to better understand what they have experienced. She is still thrilled to hear about cases where people survived Sudden Cardiac Arrest, and heartbroken to learn about cases where the people didn’t survive. Those cases are particularly devastating when the condition could have been detected in advance if the person had been through some kind of a heart screening program, or if there were people nearby who knew what to do– knew how to do CPR, how to use an AED, if an AED was available. Frustratingly, a general lack of awareness around SCA and a lack of funding have persisted throughout Mary’s career.
Mary came up with the chain of survival idea, which was popularized by the American Heart Association, and is now the industry standard template used in providing critical care for out-of-hospital Sudden Cardiac Arrest. She was also instrumental in creating the Call Push Shock messaging, which has greatly simplified the process of helping the general public remember how to perform CPR.
Transcript:
Avive: In January of 2006, the Sudden Cardiac Arrest Foundation was launched. According to its website, by colleagues who, “identified a need for an information clearing house on Sudden Cardiac Arrest and a platform for people affected by SCA to exchange ideas, information and inspiration.” One of those colleagues is Mary Newman.
Mary: Hi, My name is Mary Newman, and I’m the president and CEO of the Sudden Cardiac Arrest Foundation, which is a national nonprofit organization based in Pittsburgh, PA. The Sudden Cardiac Arrest Foundation was founded in December of 2005. And we launched in 2006 in January. We’re actually celebrating our 15th anniversary.
Avive: Mary started in the industry in 1980 when the barriers to entry were much higher than they are now.
Mary: I had studied healthcare communications and that was what my degree was in. I had three little children and I became an EMT primarily so that I could be available to help them in the event of an emergency because I was staying at home. Unfortunately they wouldn’t let me join the fire department, even though I had an EMT degree, because I didn’t have a husband, brother or a father in the fire department. Those were the rules back then. So it was kind of a challenge and a fight to be allowed to join the fire department and work as a volunteer EMT, which I did for awhile. But it was partly because of that, that Jim Paige (founder and publisher of the Journal of Emergency Medical Services (JEMS) and Executive Director of the Advanced Coronary Treatment Foundation) was interested in hiring me because he liked the fact that I was kind of fighting the status quo. And then I did work for a long time as a volunteer (and faculty) at the American Heart Association, as a CPR instructor in New Jersey.
Avive: The Sudden Cardiac Arrest Foundation’s day-to-day duties include raising awareness and providing survivorship tools.
Mary: We are really focused on raising public awareness about cardiac arrest so that eventually Sudden Cardiac Arrest will become a household word and people will understand its importance. We also have focused on survivors and increasingly on survivorship, and what happens after a person survives cardiac arrest. That is not just a physical recovery, but there’s a lot more to it that involves emotional recovery, not only for the patient, but for the family and loved ones. So, I would say our focus now is a combination of raising awareness and helping to support patients and families.
Avive: Back in the eighties, Mary helped found the Citizen CPR Foundation. She says that so much has changed for the better in the 30 plus years since founding the organization.
Mary: Hans Dahll (Laerdal Medical) was a wonderful mentor and I worked for him as a consultant. Together with Bill Montgomery and others, we founded the Citizen CPR Foundation. I think the Citizen’s CPR Foundation became the place where new Heart Association guidelines were announced every other year. And it was a place for CPR instructors to learn what the latest and the greatest was. So that was one of the main accomplishments of the Citizen CPR Foundation, which continues to this day to have a conference every other year. And this year’s conference is called the Cardiac Arrest Survival Summit and will be in December in San Diego. In some of the earlier conferences that the Foundation had, one of the things I wanted to do was find some survivors who could talk at the beginning of the conference. And back then, it was almost impossible to find anybody who had survived cardiac arrest. And ultimately we found three people who could speak on the topic, but just to show how things have changed over the years. Back then, it was almost unheard of for people to survive out of hospital cardiac arrest.
Avive: With the Citizen CPR Foundation, Mary and the team also helped launch a publication that helped even more with raising awareness.
Mary: Jim Paige from JEMS, Hans Dahll, and Tore Laerdal from Laerdal Medical, and I met at one point, I believe it was in San Diego, and talked about creating a publication called Currents Emergency Cardiac Care, which became a joint publication of the Citizen’s CPR Foundation and the American Heart Association, which ended up having a very good readership over time. It was a great time working on that project.
Avive: Mary says that the human factor is both the most rewarding and the most heartbreaking part of her work.
Mary: My job over the years in different locations has evolved from one about being passionate about raising awareness about the cause and trying to help the public understand how important it is, to include now working more and more with patients and families. And I think the most rewarding thing in my whole career has been to meet survivors and their families, and to better understand what they have experienced and the support that people need going forward. It’s not just, “You survived, hooray! Have a great day! Go on with your life.” There’s a lot more to it. So, I think it’s an area that we’re focusing on more and more, and that’s what really makes my day. Whenever I hear about a new case of survival, it’s wonderful. A lot of times, though, I hear about people who do not survive cardiac arrest and it is discouraging and sad, especially when the condition could have been detected in advance. If they had been through some kind of a heart screening program. And if there were people nearby who knew what to do, and not only knew how to do CPR, but also knew how to use an AED and that and AED was readily available. It’s really heartbreaking to see that this is still happening when so much of it could be prevented.
Avive: According to Mary, the two biggest challenges to moving the needle forward are a lack of awareness and funding.
Mary: It’s been very frustrating that we haven’t been able to move the needle too much on awareness. In fact, a couple of years ago, we were working with Jennifer Chapp (StrataVerve), conducting research about public awareness about cardiac arrest and willingness to act in an emergency. The first study was conducted in 2015, and that focused mostly on awareness. What does the public know about cardiac arrest? And it was interesting, out of 1000 people in the U.S., we asked (unaided), what are their main health care concerns for themselves or for their families? And out of 1000 people, not one person mentioned that Sudden Cardiac Arrest. Mostly it was, it could be heart disease in general, it could be diabetes, cancer, but nobody specifically mentioned Sudden Cardiac Arrest. And I think a lot of that has to do with the confusion with heart attack.
People don’t understand that Sudden Cardiac Arrest is not the same as a heart attack. A heart attack can lead to cardiac arrest, but there are many other causes as well. So that was very enlightening to find out how little people knew. We did a second study in 2017 to see if anything had changed. And unfortunately it had not. It was still low on the totem pole as far as awareness goes. But, in addition, we looked at messages that might resonate with the general public and what kinds of things would help people to understand that this is important and you can really make a difference. You can save a life. And the message that resonated the most on an intellectual level was the fact that you can double or triple the chances of survival with early bystander intervention, and then at an emotional level, the fact that chances are the person that you will save will be somebody that you know and love.
The fact that Sudden Cardiac Arrest happens most often in the home, 7 out of 10 times, people are most likely going to be called upon to help somebody that they care about. It’s not necessarily a stranger. That research was very compelling and showed the importance that we need to increase messaging and increase outreach to the general public. A lot of that is being done through schools, and increasingly in sports venues, but it should be something that is well-known. Probably one of the main reasons that we haven’t been able to make more of a dent on this is related to funding. Funding goes to a lot of other causes before cardiac arrest. It’s not very well-funded compared to other conditions and diseases.
Avive: Mary says that the lack of funding has to do with the survival rates of Sudden Cardiac Arrest, even though strides are solely being made with the number of survivors.
Mary: Well, for one thing, there aren’t a lot of survivors to talk about it. Increasingly, thank God, we have more and more people who are surviving cardiac arrest, and that’s wonderful. However, it’s still a small percentage, maybe 10 to 12% of all out-of-hospital cardiac arrest cases. So it’s still very small and, unlike breast cancer, for example, that can have a Mother’s Day march with many many survivors in it, we don’t have a lot of survivors. And I think the more that we can show how many people it’s affecting, the better off we will be.
Avive: Another advancement Mary has noticed over the years is with AED.
Mary: I remember in the beginning, when I was writing, I was the editor of Currents Emergency Cardiac Care, which was a joint publication of the American Heart Association and Citizen CPR Foundation. I can remember writing an article, a defibrillator on every fire truck, like that was supposed to be something unusual and then eventually a defibrillator in every police car. You know, now my thought is it should be an AED in every home, at least for people that are at risk. But way back in the beginning, it was complicated to use those devices. And it didn’t help that the cases had signs on them that said, “For use trained personnel only”. And I think increasingly those signs are going away, so people understand that this actually could be used by a regular person who has no medical training. Part of the research that we did with Jennifer Chap involved qualitative interviews with “men” in the street. We showed them an AED. And when they saw how simple it was at first, they were like, “No, I’m not…I don’t want to touch that.” And then after they saw what it involved there, we were like, “That’s all there is to it? You press a button and you listen to the directions? I can do that.” So I think that’s a great evolution that we’ve come along that far.
Avive: There is still a lack of understanding among the general public of the difference between a heart attack and sudden cardiac arrest. And Mary says that this is a sticking point with cardiac arrest survivors.
Mary: One thing that is an issue for survivors is that they don’t want to be thought of as somebody who had a heart attack, because there’s a stigma attached to it that you could have prevented your own heart attack if you had lived a healthier lifestyle. And that’s not the case. With many survivors, that’s an issue. They want people to understand the difference because there’s really nothing they could have done to prevent their cardiac arrest, whereas with a heart attack, a healthy lifestyle can help prevent that.
Avive:The Chain of Survival is now the industry standard template used in providing critical care for out-of-hospital sudden cardiac arrest. And we have Mary Newman and a lunch meeting to thank for this.
Mary: The Chain of Survival originated in the late eighties. There is a researcher by the name of Kenneth Stults and he was advocating for something called “Phone First”. At the time, the paradigm for teaching the public what to do in the case of out of hospital cardiac arrest was to start CPR and then call 911, but who would bring the AED or defibrillator? So we were having lunch, talking about this and I said, “Well, why don’t we just call it the Chain of Survival and try to teach people to first call, then start CPR, and then use the defibrillator?” And he said, “That’s a really great idea! Why don’t you write it up?” So I wrote an article about it that was published in JEMS in 1989. And then I wrote an article that was published in Currents Emergency Cardiac Care on the same topic about the Chain of Survival. And that was published in 1990, I believe. I was later approached by a physician who was a volunteer with the American Heart Association who asked if I would mind if he would use the concept for a presentation he was doing. And he ended up writing a paper that was published (in Circulation). So basically I came up with the idea, but it was popularized by the American Heart Association. Then we eventually talked about adding advanced care. So we had developed the chain that would include call 911, start CPR, use the defibrillator, and then early advanced care was EMS coming in and helping. I also worked with Dr. Raymond Bahr, and he and I wrote an article that focused on the importance of early recognition of the event.
Avive: Mary was also instrumental in helping with the messaging for Call- Push-Shock, creating an easy to remember saying so that anyone will know these critical steps.
Mary: I’m excited about the Call-Push-Shock movement. And that really came about after the research that was done. We learned about the messages that resonate with the public. Jen Chap, Martha Lopez-Anderson from Parent Heart Watch, and I came up with the idea of Call-Push-Shock. You know, it really makes it easy, a succinct message you need to remember, like “Stop, Drop and Roll,” things that you learn as a kid, and you remember your whole life. So we’re hoping that Call-Push-Shock is something that will become more and more prevalent as a simple messaging device to teach the public. We’re excited, we have over 50 different groups that have joined Call-Push-Shock, including the CDC, which actually promotes it on its website. So that’s pretty rewarding!
Avive: Sudden Cardiac Arrest Foundation relies on the financial support of others and Mary welcomes anyone and everyone to help them with their mission.
Mary: If people want to help support our mission, we would welcome donations. We actually receive donations from many survivors and families, and also from people who have lost loved ones. Individual donations seem to be increasing over time because of our increased awareness. We also are looking for volunteers to help in various capacities. We welcome volunteer support. And then in terms of sponsorships, we have a number of corporate sponsors and foundations that support the mission. And most of them have been doing this consistently over the years since we started. So that’s a good sign. Financial support enables us to do the programs that we want to do to educate the public and also to help support patients and families.
Avive: Mary Newman has made great strides over the years in getting the word out about Sudden Cardiac Arrest. And occasionally she’s reminded just how much she has accomplished.
Mary: One thing that is an issue for survivors is that they don’t want to be thought of as somebody who had a heart attack, because there’s a stigma attached to it that you could have prevented your own heart attack. If you had lived a healthier lifestyle. And that’s not the case. With many survivors, that’s an issue. They want people to understand the difference because there’s really nothing they could have done to prevent their cardiac arrest, whereas with a heart attack, a healthy lifestyle can help prevent that.
Avive: The Chain of Survival is now the industry standard template used in providing critical care for out-of-hospital sudden cardiac arrest. And we have Mary Newman and a lunch meeting to thank for this.
Mary: It’s really very rewarding to see how the Chain of Survival has taken off over all these years and that it seems to make a difference as far as educating people about what to do. I have to say that my kids eventually had to learn it in school. And they’re like, “Did you really come up with that?” I’m like, “I did.” So it’s kind of nice on that front too.
