Did you know that even when experiencing textbook heart attack symptoms (like my own chest and left arm pain), people wait an average of four hours before seeking medical help? The tragic irony is that heart patients who do best are those who can be treated within the first hour of those initial acute symptoms.
Heart attacks are dangerous and scary – so why do so many of us suffer silently for hours (and in many cases, far longer?) This treatment-seeking delay behaviour concerns many researchers, including Yale University’s Dr. Angelo Alonzo. He told me:
“Ask people what they would do if they had a heart attack and, of course, they’d all insist they would seek care immediately. Sounds easy! But in reality, few people actually do drop everything to get help.”
When it comes to heart attacks, time is muscle. And since delaying treatment for more than 60 minutes may cause irreversible damage to the heart muscle, Yale researchers want to figure out why so many of us appear so reluctant to “drop everything to get help”.
Yale Heart Study researchers led by Dr. Alonzo, the study’s principal investigator, developed an online, self-tailoring survey to examine how people behave during a heart attack.
Unlike lots of previous research on treatment-seeking delay in heart patients, this Yale study will gather a far broader sample of heart attack survivors, and will also focus on survivors living in rural, suburban, urban and in-between settings.
Despite all those previous studies, Dr. Alonzo remains frustrated:
“We still have not come up with an effective intervention for getting people to the hospital much earlier than the typical median time of around four hours.”
This Yale study will take a look at a wide range of behavioral variables that lead to our treatment-seeking delay behaviour during a heart attack. For example, the online survey includes questions were designed to gather valuable information about:
- how we made decisions during our cardiac events
- our perception and interpretation of symptoms
- the situational setting of our cardiac events
- the advice and perceptions of laypeople helping us
- the day and time of day
- our prior experience with the Emergency Department, first responders like ambulance/fire personnel, and the health care system
- how our evaluation and level of concern changed over the care-seeking period
Personally, I am particularly interested not only in how survivors describe our past treatment-seeking delay behaviour, but also in how fast heart attack survivors react during a second or third (or fifth!) cardiac event in the future.
We know, for example, that women who have already had a heart attack are at high risk for another one. But the symptoms of a second heart attack are not always the same as the first. It can sometimes be hard to tell heart attack chest pain from routine chest pain (angina) that has become “normalized”.
You might imagine that those of us who’ve already survived a heart attack would act with laser-like haste in seeking help if we ever recognize those familiar symptoms again any time in the future. Trouble is, I’ve met a distressingly high number of survivors who reported delaying medical help even during subsequent heart attacks – both when symptoms felt very different compared to their first cardiac event, but also when their symptoms were completely the same.
WARNING: If your doctor has prescribed nitroglycerin for chest pain, call 911 if you need more than two doses of nitro because your cardiac symptoms do not go away. If your symptoms are different, stronger, or last longer than usual, call 911 right away – it could be a heart attack.
To try to track other specific reasons for subsequent heart attack care-seeking delay, Dr. Alonzo also embedded into his survey a Post Traumatic Stress Disorder (PTSD) scale. He hopes this will assess accumulation of survivors’ PTSD-like experiences that may inhibit effective care-seeking during those subsequent events. These include:
- details about the prior cardiac event itself
- the Emergency Medical Services experience
- changes in lifestyle that may have ensued
- the hassle of dealing with medical bills and insurance matters
- previous life events of a traumatic nature
This phenomenon of surviving multiple previous traumatic events, he says, is known as cumulative adversity.(1)
“People may delay a bit longer, wanting to make certain that the event is real, wanting to avoid potential embarrassment, not wanting to repeat the same experiences, and not wanting to burden family or friends if unwarranted (e.g. not crying wolf).
“All of these factors may conspire to delay subsequent heart attack care-seeking.”
Dr. Angelo Alonzo has been working on the problems of delayed heart attack care-seeking for about 40 years, ever since he was a public health officer with the National Institutes of Health. Back then, he and a fellow officer, Dr. Arthur Simon, began interviewing patients who had experienced an acute myocardial infarction (heart attack) – and thus was born their first study on this topic:
“I once gave a talk about my work called ‘Who Is Going to Feed the Canary?’ It’s a reference to the fact that, even in mid-heart attack, we are so embedded and invested in our daily lives that we are very, very reluctant to just drop everything and seek medical care.”
Based on this work, Dr. Alonzo offered some possible reasons for our alarming reluctance to ‘drop everything’ even for something so serious as a heart attack :
- we have to be certain it is a real problem
- we have to finish the task at hand
- we need to make arrangements if we end up being hospitalized
- we have to cancel appointments
- our work activities are important to our identity
- we are just too strongly tied to our social obligations to just leave them
- we have to make sure we are clean for a doctor visit
- we do not want to bother others
- we do not want to bother the hard-working doctor
- we do not want to be taken out of our office or home by emergency personnel by ambulance
For far too many of us, he added, it’s only when the cardiac signs and symptoms become so overwhelming that we have few other choices are we likely to finally agree to seek and accept medical help.
So far, Dr. Alonzo told me, the Yale Heart Study has recruited enough research participants, over 2,300 survivors, in order to obtain a representative sample.
Dr. Alonzo also reminded me that women in general take more online health surveys than men do. His team will ultimately be able to tease out study result differences by sex, age and race.
The Yale Heart Study team has been funded by a grant from the National Heart, Lung and Blood Institute of the National Institutes of Health. All data collected will be used to develop strategies to maximize effective care-seeking in the future.
(1)Turner, R. J., & Lloyd, D. A. (1995). Lifetime traumas and mental health: the significance of cumulative adversity. Journal of Health and Social Behavior, 36(4), 360-376. American Sociological Association
NOTE FROM CAROLYN: I wrote more about women’s treatment-seeking delay during a cardiac event in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your nearest library or local bookshop or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price)..
“Knowing and Going”: Act Fast When Heart Attack Symptoms Hit
The Myth of the ‘Hollywood Heart Attack’ for Women
Why Wouldn’t You Call 911 For Heart Attack Symptoms?
27 thoughts on “Yale Heart Study asks why we wait so long before seeking help in mid-heart attack”
Hello. Are the study findings available for public view? And/or is updated information available on the above mentioned topics/story?
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Hello Mrs. Wolf – interesting that you should ask. Because of some unique technical glitches involving the web-based participant survey platforms (a decade ago, this was apparently a relatively new way to conduct studies), plus some unanticipated administrative, funding and staffing changes in the research ‘home’ (from Ohio State University to Yale), this study was unfortunately not completed. FYI, in 2017, the lead researcher Dr. Angelo Alonzo wrote about his experience and the lessons learned in the Journal of Medical Internet Research Protocols.
I’ve been a nurse for 16 years. I am only 36 years old. I have been having burning palpitations in my chest (the burning similar to if you are lifting weights and your muscle starts burning) for 36 hours. Have been increasingly fatigued and have had unexplained numbness in my right arm for months. Something doesn’t feel right. HOWEVER, years ago I went into the ER one evening with hard heart palpitations- it felt like my heart was going to beat out of my chest. My BP was 186/104. They did bloodwork and an EKG, but treated me like a drug seeker the whole time. I did not ask for, nor do I even want any kind of pain med. Yet the disgust that ALL the staff in the ER treated me- even down to the rectal temp they “needed”.
I called a cardiologist today and made an appointment for December 7th. Hopefully all will be well…
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Hello Laura – you have just followed the advice you would likely to have shared with your family members or your patients! You are now one step closer to narrowing down the cause of your symptoms. No wonder you were reluctant to go to the ER after being disrespected and dismissed years ago. That’s a powerful message you received back then, one that will heighten denial when symptoms return. The trick is to overcome those messages when you have that strong gut feeling that what you’re feeling is not “right” for you…
Funny you should mention burning – my own most prominent heart attack symptom was a roaring burn from my chest right up into my throat that was almost identical to what I used to feel for years as a distance runner when running hard up a steep hill. I just thought this was my lungs screaming in protest! So fast forward to my heart attack: that symptom felt oddly familiar to me, which is why it was easier for me to ignore… Best of luck to you on the 7th!
I’m here trying to decide if I have gas pains. I don’t get sick so it couldn’t be heart. I have alerted neighbors in case it gets real, because I’d want to go to a hospital that 911 doesn’t take me to, with a better reputation.
I just don’t believe someone as healthy as I am could have a heart problem. I’m sure I’ll be fine and I can’t deal with the drama. It sounds stupid but I don’t want to go unless I need to. And it’d be too expensive and I don’t have anything but medicare.
Moorphey, your reluctance to seek emergency care is very common – even during a full-blown heart attack. By now (12 hours since you sent your comment in) you’ll have a better idea what your symptoms meant – meaning you’re either in hospital by now or you’re at home feeling better. I will warn you, however, that the hospitals of the world are filled with heart attack survivors (and unfortunately many who did not survive) who delayed seeking medical help because they too absolutely insisted they were “too healthy” to possibly have heart disease. Nobody is “too healthy” for this… Best of luck to you…
Exactly. I’m fine today, and thanks for your words. I have never had pain right around the heart before and this raised an alarm in my mind. I had NO pain in either arm nor jaw.
And the one alarming thing besides the gnawing pain in my heart was that the previous day I had been queasy/nauseated all day.
Even thought it didn’t feel like an acid stomach or LPR, it seemed prudent to take a PPI and Probiotics. The pain came and went a few times, so I continued to be concerned. I felt fine for a while, and ate some dinner. Pain back. Another PPI.
I packed a bag of some crucial things for me, just-in-case.
I slept for several hours and woke up feeling fine. It was an unknown feeling and I’d like to identify it. As I’m aging and alone as well as healthy, I get what feels like neurotic when something is off, something that I wouldn’t think twice about were I younger.
I appreciate your site as it has been quite comforting to me.
Best to you, too, on what is a dark and rainy day where I live.
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That nausea/queasy feeling the day before, and pain following a meal may also be important clues. If symptoms return, you might want to talk to your doctor about stomach-related issues. So much of medicine is just trying to figure out what the problem is NOT…
I have been a nurse for 31 years, talked to people everyday about their health and medications, but when it came to my own health, I was always in denial. I would put off going to get check-ups, knowing in my heart and my knowledge of things that this was wrong.
Then, BOOM – on 8-8-11 my day started out with heartburn after eating breakfast, stopped to purchase Tums, ate almost the whole roll, without much relief, I drove my route (100 miles) to visit my patients. By noon, I began having pain down both my inner arms, and that vise-grip pain in my frontal chest and left shoulder blade, s.o.b., and anxiety. I even called two of my nurse buddies asking them to say something to help me cry, I just thought I was anxious.
Nothing worked, by 2:30 that afternoon, I was really in pain and knew deep down what I was experiencing, just still couldn’t accept it. My husband practically picked me up and threw me into the car to the ER. I was there only 30 minutes, the Dr. filled me full of Plavix and Aspirin – and off to the Heart Center I went.
The nurse in me couldn’t stop looking at the monitors, watching my heart throw those PVC’s, and stressing even more. But I will say, I was so impressed with the heart team I had, I felt at ease when they took over my care. I had two 100% blockages that required two stents. Then, two-weeks later, had my first stress test, and failed miserably, found out that I had another 95% blockage (not life threatening), and two 30% blockages in smaller vessels. At the present I am completing ECP therapy, feeling some better, have not worked in 5 months ( I really miss that), but I have learned to take time for me, take care of me for a change, I also stopped smoking completely.
I am trying so hard to stress less and to laugh more, and I know that being diagnosed with CHF will be my new goal to keep in check for the rest of my life, now my goals are to really live my life differently, take more moments for myself, and talk to other women about heart disease and the symptoms.
What a story, Joy! Interesting that you needed your hubby’s insistence before you went to the E.R. Read “Knowing & Going“ for more on why we sometimes won’t listen to our own inner voice, but may listen to others! Also, I hope you will participate in the Yale Heart Study to tell your story there, too.
Good luck to you,
My symptoms were mainly a severe acid reflux burning pain, and slight pain in left shoulder. I had an old injury to that shoulder and thought it was acting up again. I should have known when tums etc wouldn’t help the pain. I couldn’t sleep that night, I was so restless. I went to a clinic, the next day, and they took x rays of my stomach, checked my BP (which was normal) and sent me home…
That night I started vomiting (it took the vomiting to get me going) and I went to Emerg. You have to go to Emerg. where they have an ECG machine. In seconds they knew what was wrong… I have some damage to my heart and on lots of meds. I’ve been told I should be okay and am feeling better now (only a week since this happened) I was told I had an atypical type heart attack, which women sometimes have. We have the best cardiac team here in Victoria Canada and I want to thank them “with all my heart”.
You’re right Margaret – our cardiac team in Victoria is fantastic.
Let’s work on preventing and reversing heart disease by being “plant strong”. Research shows that if you keep your total cholesterol under 150 and your LDL under 80, you are heart attack proof. This can be achieved with a whole foods plant-based diet.
Thanks Dany – actually, despite Big Pharma’s best efforts at funding research to ‘prove’ the role of cholesterol in heart disease (thus treatable by their statin drugs), considerable emerging research questions this link. A ‘whole foods plant-based diet’ is certainly one good heart-healthy way to help address one’s cardiac risk factors – but “heart attack proof?” That magic bullet does not exist, and certainly fails to address the wide range of other serious non-dietary risk factors (pregnancy complications, age, family history, chronic stress, physical inactivity, sleep breathing disorders, etc).
Such a wide range of risk factors deserves a wide range of healthy lifestyle improvements (including but not limited to what we choose to put into our mouths).
Hi. My name is Harlan Krumholz – I am a cardiologist at Yale and in charge of the Yale Virgo Study.
I am so appreciative of the attention to the Yale study and the many patients and physicians and hospitals around the country who have participated. We are seeking answers for young women who have experienced heart attacks – questions about their care, and their condition, and their lives – so that we may help them and others to avoid health problems in the future – and to help the health care system to be more responsive to their needs. We are also studying some young men to understand the differences in younger women and men – all in an effort to improve care and to make for a better recovery after a heart attack. There are so few studies of young women with heart attacks – this group has been neglected.
I am sorry to hear from Robin who indicated that she had a negative experience with the study – but I am also a bit confused.
We are an observational study – that means that we do not change anything – we are collecting information to describe the experience of those who are in the study. We are trying to give voice to patients and our intent is to listen and collect information and then let others know how patients feel and what is happening to them – and what we can do to help them more.
We do not take anyone off their medications – and we do not conduct an examination. We ask questions of patients and listen to their answers. We ask permission to talk with them – and review their records. Everything is confidential – but we combine the answers so that we can learn something together. We consider those in the study to be our partners, not our subjects and hope to learn something together that will help people.
I am looking into her experience but I want everyone to know that our attitude is to listen and respect those who are partners with us in this research – we are on a joint quest to find answers that will make a difference.
Hi Dr. Krumholz,
Please forgive me for leading you to believe that the study with the medication is part of the Virgo study. Virgo was only the first sentence and I stated that I finished my last phone interview.
There is more then one study being run by Yale at the hospital, The other entailed my blood being sent. I am not sure as to just what it is because the papers are in my office at work. But I am making this statement to let others know that I stated that I had finished the Virgo Study by phone. Forgive me again for allowing the two studies to look like one, that was truly not my intention.
P.S. I am in the studies hoping that no other woman ends up in the condition I am in for lack of knowledge.
Thanks Dr. K for taking the time to help clarify these important points about your cardiac research, one of a number of heart studies at Yale. For the benefit of my readers, here’s more about Dr. K’s Virgo Study from the journal, Circulation, which reminds us:
“Although women younger than 55 years of age account for less than 5% of hospitalized acute myocardial infarctions, heart disease is a leading killer of young women. Despite a higher risk of mortality compared with similarly aged men, young women have been the subject of few studies.”
I did the Yale Heart Study over a month ago. I was part of their Virgo study and finished the last phone interview this week. Yale has a research office in the hospital where I am. The next to is to see if I can continue in the study for the next 33 months but that may be out of the question. In order for me to continue they must get the consent of my cardiologist. They feel I am perfect for the study because I haven’t been readmitted to the hospital. But the study entails the possibility of my being taken off Plavix and that’s the one thing he’s not going to allow. They were to have called me back today to say which way things would go and for them to schedule an exam.
If they’d ask I would have told them that he wouldn’t allow it, I had been rushed off the phone. Sometimes when studies are run, the organizations need to listen to the people who they are using in their study. This is one of the main reason they can’t seem to find an answer. I was trying to help them but that is part of the problem of them not listening to women. It is even a part of the way they run studies.
Until I read this article, I though that I was unique in this area.
I delayed seeking help with my first heart attack. I knew the symptoms plus I knew it was real. Now months later I am still not sure if I would not do the same thing again. That is not what I would suggest to others. This is a personal thing that I have discussed with my physician but I must admit that in your article you hit the nail on the head several times that has brought me to that type thinking. After reading this I have to give this more thought. Thank you for writing.
Ann, I hope you will now tell your story to the Yale researchers by participating in this study.
Another superbly elucidated essay. If you are interested, there is an additional subclassification called PDSD (prolonged duress stress disorder)
“Chronic, prolonged stress during developmental years (neglect, chronic illness, dysfunctional family, etc.) can take its toll on the autonomic nervous system, just short of pushing it to the point of flight, fight or freeze. The needs of this client most resemble those of Type IIB(nR)…treatment method may also be the same.
Type IIB (individuals so overwhelmed w multiple traumas they are unable to separate one trauma from another.
Type IIB(R): stable background but complexity of trauma experiences are so overwhelming she can no longer maintain resilience.” (p.80-81 The Body Remembers/First, Do No Harm. Babette Rothschild).
Thanks so much for your note and this reference. I have heard of PDSD, usually in bullying cases, but – speaking strictly as a dull-witted heart attack survivor here and NOT as a professional – I have to say that anybody who has been repeatedly misdiagnosed in mid-heart attack and sent home from hospital can confirm that this is an absolutely crazy-making scenario, and I don’t care what they call it! I’m writing an upcoming article on a similar issue (“Gaslighting’ – Or, Why Women Are Just Too Darned Emotional During Their Heart Attacks”) scheduled to run here next week on November 25th. It’s a concept that has the same damaging effect, in my humble opinion.
I’m sure you’ll do it justice Carolyn. I recently had to watch my friend be told by a young ER nurse…“well, no wonder you feel so anxious…you are soooooo upset!!!’ This after 6 hours in ER cubicle mostly being ignored. My friend is a neuropsychologist with over 20 years of practice specializing in brain damage assessment. Looking forward to ‘Gaslighting’.
“Well, no wonder you feel so anxious…you are soooooo upset!!!”
One word: “AAARRRRRGGGH!”
What a well done article! Thank you filtering all the information out there into a single, informative article. I have interviewed Angelo Alonzo myself and he has unique perspectives– the concept of “cumulative adversity” you wrote about, for example. Another is “behavioral autopsy”–for the mystery lovers out there!
Thanks Suzanne! “Behavioral autopsy”? Dr. A didn’t mention that to me – must look that one up…
Behavioral autopsy! Thank you Suzanne. (member Smithsonian Guild of Natural Science Illustrators, 2004 GNSI conference chair at College of William & Mary in addition to 20+ year career as science artist at NASA and Jefferson Lab/particle accelerator facility here). Because I was quite articulate in medical situations yet was repeatedly dismissed until a massive heart attack at 41, I have been going at why this happens to younger women…from multiple angles. Because my initial findings are so complex, I’ve been studying documentary formats. This needs to be the final format to reach the general public.