As if fear of dying weren’t bad enough . . .

~ Carolyn Thomas

by Carolyn Thomas  ♥  @HeartSisters

In the astute words of the late Irish soccer star, George Best:

“People say you have to hit rock bottom, and I can tell you that almost dying is as rock bottom as it gets.”
Here at Heart Sisters World Headquarters, we have important news from the Department of the Bleedin’ Obvious: feeling terrified by the immediate possibility that you’re dying is “quite common among patients suffering a heart attack”, according to U.K. research published in the European Heart Journal.(1)
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In fact, researchers observed that “although heart attack survival rates have improved tremendously over the last few decades, many patients remain quite frightened during the experience” (an understatement, by the way, that could only have been uttered by somebody who’s never actually experienced a frickety-frackin’ heart attack). 
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But it turns out that the intense distress caused by this fear of dying in mid-heart attack is not only a common emotional response, but is also linked to actual biological changes during the weeks following a cardiac event – changes that are ironically associated with a higher risk of suffering yet another heart attack.

When researchers in the U.K. studied hospitalized heart patients, they discovered an interesting association. Intense emotional responses were linked with high levels of a molecule that induces systemic inflammation in the body. Researchers also found that this emotional response correlated with indicators of both worse biological function and worse prognosis three weeks after discharge from hospital compared to heart attack survivors who did not experience an intense fear of dying.

To their surprise, having had a previous heart attack did not influence how frightened the patients were, nor did the severity of the current cardiac event. People who were younger, poorer or  unmarried (possibly indicating social isolation) were more likely to have intense fear reactions, the study found.

Professor Andrew Steptoe at University College London explained three key findings of his team’s research:

“We found that, first of all, fear of dying is quite common among patients suffering a heart attack.

“Secondly, fear of dying is not just an emotional response, but is linked into the biological changes that go on during acute cardiac events. Large inflammatory responses are known to be damaging to the heart, and to increase the risk of longer-term cardiac problems such as having another heart attack. We found that, when compared with a low fear of dying, intense fear was associated with a four-fold increased risk of showing large inflammatory responses.

“Thirdly, fear of dying and inflammatory responses in turn predicted biological changes in the weeks following an acute cardiac event, namely reduced heart rate variability and alterations in the output of the hormone cortisol. These processes may contribute to longterm poor outcomes.”

But which comes first?  Does the extreme anxiety around suffering heart attack symptoms cause these biological responses, or do the physical symptoms of a heart muscle deprived of oxygenated blood flow cause them?

As I’ve written here and here, I can tell you from personal experience that there are few things in life more anxiety-provoking than being in the middle of a heart attack.  This U.K. study was small (about 200 patients, and – as usual – mostly male) but it does “remind us of the connection between the mind and the body”,  according to Dr. Suzanne Steinbaum, a preventive cardiologist in New York City:

“This trial shows us that when patients are so fearful, there’s an increase in inflammation and decrease in heartbeat variability, which could lead to poor outcomes.

“So we must address not only the body issues, but the mind issues as well.”

Professor Steptoe and his co-authors report that, although the processes of these biological responses are not fully understood, they may be connected as an integrated response to a severe injury to the heart.
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.“We do not know whether helping people overcome their fears would improve the clinical outlook, or whether reducing the levels of acute inflammation would have beneficial emotional effects, but these are possibilities.”
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“At the immediate clinical level, we recommend that doctors talk to patients more about their emotional experience when having a heart attack, rather than just concentrating on the physical outcomes. The two are closely linked, and better information and reassurance could be of great benefit.”
The fact that a scientific paper has to tell physicians that it’s a good idea to talk to their patients about the fear that’s widely identified as a companion to a cardiac crisis is telling.  This might be partially explained by this theory from cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, who once wrote that many heart specialists may have neither the time nor the expertise to address their patients’ emotional health:

“Cardiologists may not be comfortable with ‘touchy-feely’ stuff. They want to treat lipids and chest pain. And most are not trained to cope with mental health issues.”

I’m reminded of a story I heard long ago about a man who collapsed during a serious heart attack while out playing golf one morning with his friends. He was experiencing alarming symptoms of crushing chest pain, he was sweating profusely and had vomited, but was conscious as he lay on the ground waiting for the ambulance to arrive. Everything around him was pure chaos: all he could hear were his friends yelling at him and to each other amid the scream of approaching sirens.  His breathing became fast and shallow as a sense of fear and icy panic gripped him. He knew he was dying – right up until a kind bystander knelt down beside him on the grass, took his hand and said to him in a soft, gentle voice:

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    “Take a nice big breath and try to stay calm. Help is on the way for you. They’ll be here in just a few minutes, and will take you to the best hospital in the area. Doctors there know exactly what to do to help you get through this. You’ll be in very good hands, and will be cared for by experts who are well-trained and experienced.  Just keep breathing, nice and slow…”
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Can you imagine how simply hearing those words of reassurance might actually feel to a terrified heart patient?
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No matter what the eventual outcome, health care providers would do well to remember that patients don’t know or care about statistics that show “heart attack survival rates have improved tremendously over the last few decades”. All they know is that something terrible is happening to them RIGHT NOW.
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And that terrible something just might kill them.
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Let’s hope that first responders and emergency medicine staff can remember that they’re not just treating a misbehaving organ, but a whole person – a person whose fear can and should be addressed as competently as that errant organ.
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Q:  Have you ever experienced a fear of dying during a medical crisis?
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(1) Andrew Steptoe, Gerard J. Molloy, Nadine Messerli-Bürgy, Anna Wikman, Gemma Randall, Linda Perkins-Porras, and Juan Carlos Kaski. “Fear of dying and inflammation following acute coronary syndrome.” European Heart Journal, June 1, 2011.
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UPDATE FROM CAROLYN:  I wrote more about the fear of dying during a cardiac event n my book “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press). You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price). 

See also:

How a heart attack can trigger PTSD

No such thing as a “small” heart attack

News flash: care improves when doctors consider the whole person

The new country called Heart Disease

Cardiac care for the whole patient – not just the heart

“You’ve done the right thing by coming here today”

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Published by Carolyn Thomas

16 thoughts on “As if fear of dying weren’t bad enough . . .”

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  3. Carolyn, all I can say is WOW.

    I read this blog a couple of days ago and went back to read several others you have written over the YEARS and from those came across a wealth of additional information on the subject of “the anxious female”.

    The positive that came out of it is that at the age of 66, I realize that I am not alone in these experiences! That has been life-changing for me to know that (and mine started as a child – a story for another day). The resulting PTSD from my heart attack 11 months ago on top of what I now think has been PTSD resulting from my childhood experiences has been overwhelming. Add to that the attitude toward me as the “anxious female”, it is a wonder I am still here. Truth be told, if it wasn’t for your blog on this subject and other important information like cardiac rehab, I probably wouldn’t be!

    But I am, and now I am frickety-frackin mad!

    There has to be a way to bring even more awareness to this deadly problem and demand change! Even if you are an anxious person or have mental health issues…so what, you still get sick like everyone else. What can I do? How can I help? The work you do is invaluable and lifesaving!

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    1. Well, WOW right back at you, Janet! Thank you so much for your kind words. What can you do? Don’t be mad – be an activist! Do your best to take gentle care of yourself, get as much help as you can (professional and otherwise) so you can stay as healthy as possible both emotionally and physically. And most important, share what you’ve learned with others, too. Thanks again and best of luck to you!

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  4. Based on some of your readers’ comments I wonder . . . an elevated physical stress response caused by pain is almost identical to the mind-body’s fear response.

    It’s well researched that how we cognitively label/define our physical responses, how we perceive them, is the major determinant of our experience. So . . . if you are “looking forward” to dying (like a suicide bomber perhaps) the experience might not be terrifying but as Karyn A. described, a relief or exciting.

    From a neurochemical/bio-electrical point of view – how we label all of life’s events is what ultimately determines our experience . . .

    Having said all that . . . my favorite concept in your entire post is “frickety-frackin” heart attack! Well described!

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    1. Thanks so much, Judy-Judith! One of the most interesting parts of the U.K. research I cited here was that “having had a previous heart attack did not influence how frightened the patients were, nor did the severity of the current cardiac event.” So you could be extremely scared of dying with relatively mild symptoms, or not scared at all with severe symptoms. The mind-body association is indeed mysterious. Your last line reminds me of a comment from one of my readers who recently wrote: “I enjoy your combo of brisk journalistic writing and ‘frickety-frackin’ heart attack’ lingo.”

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  5. Having been through years of the experience of “feeling like I was almost dying” via Coronary Microvascular Disease, I have read widely, experimented widely, found some treatments that helped, some partially and some more dramatically. Combined, they have yielded great improvement for me, personally.

    One of the treatments I undertook was EMDR (eye movement desensitization and reprocessing) that helped me release some trauma, both early and via the continual experience of “almost dying” with chest pain and shortness of breath. At that point, much chest pain remained, but I was able to release the trauma and fear surrounding it, and deal with the situation without the panic and fear.

    In retrospect, I experienced many of the things written about in the following book.

    Subsequent to that treatment that was about 5 years ago, I read a book this year. The title is IN AN UNSPOKEN VOICE by Peter A. Levine, PhD (on how the body releases trauma and restores goodness). I found it to be profoundly enlightening. In it, he discusses the central nervous system, the VAGUS, the chemistry of the body in trauma, the body’s reactions to trauma, embodied self-regulation and how to move through it and process it successfully. It is a challenging read, but any therapist we work with should know about it.

    Your discussion, Carolyn, is a worthy one because this journey of the heart or any traumatic event will take us through this landscape. The important thing is to not get stuck, to keep learning, processing and finding answers. They can help. It is not as easy as it should be and this knowledge is not widely available.

    Our medical system can range from primitive treatment to the most complete and sublime healing depending on who we find, what they know and how passively or actively we engage. We as patients are not always in control of what our healers know, but we must be our own aggressive advocates as we can, finding healers who do not rest on outdated information, but who want to be at the top of their game.

    The thing we can always control is our own advocacy and our own knowledge. I truly think there is no other way.

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    1. So beautifully said, Mary. I’m not familiar with the Levine book but will definitely look into it. At the Regional Pain Clinic where I’ve been a patient for a number of years – also treated for MVD, with a comprehensive emphasis on pain self-management along with both conventional (meds/surgery) and complementary (TENS, health recovery tai chi, meditation, yoga) treatment options, we often talk about our central nervous system and its powerful impact on the severity of pain we feel.

      I love what you say about the importance of not getting stuck in the pain – no matter how tempting that may feel at times. Thanks so much for your comments here, Mary…

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  6. I have never had “the heart attack” but have had a triple bypass and a stent. That would sound like my arteries are all clogged up with plaque but that is not the case. Somehow through the Grace of God we discovered I had a widowmaker. I was increasingly weaker this particular week and had “anxiety” in my chest. It took three days and a 64 slice ct scan to discover my left main was 85% blocked and the right side of my heart just didn’t have many vessels and the rest of my vessels were tiny tiny little vessels. So one bypass for the left main widowmaker (just at the doorway off the aorta and not safe to stent), two bypasses to help fix what I was born with.

    The morning I was told I needed a triple bypass, I was alone. My husband had gone to work that morning. I was scared and I prayed. I felt like a hand was laid on me and I then knew I would be okay. If I died, I would be okay, if I lived I would be okay. I was at peace.

    Six months after as I was walking during lunch, I could not catch my breath, I ended up in the ER . One graft had failed. Nothing doctors could do. “It is too small to correct, it cannot be stented” and “You cannot have angina from this little thing. “

    So that started 8 years of being scared to exercise. Every time I did I had angina. Countless ER visits only to be told “It is not your heart”.

    I finally met another cardiologist who thought maybe now that I am safely bypassed that maybe they could stent my left main and that would allow enough blood through to give me comfort. Yes, it worked!!

    So why does this still bother me? After 8 years of angina and doctors telling me it is in my head, I am scared to push my body. I have gained 40 pounds these last 8 years, and I am miserable. I am scared to jump in the lake and fend for myself to make it back to the surface. I am so out of shape and scared to get back into shape.

    I have done cardiac rehab, but this started when I was 46. I am gainfully employed. Rehab centers cater to older retired folks who do not work. I am on my own. My will power is gone. I am scared to live.

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    1. Hello Jennifer and thanks for telling us your story.

      Being “scared to live” sounds almost worse than “scared to die”, because the first can last far longer than the second – the worst of which usually hits during the medical crisis itself. Being afraid to move your body is completely understandable given your history, but you probably already know that moving your body will almost always help your heart (a muscle that needs “work not rest“) and will also almost always make you feel less miserable.

      There’s a wise saying: you lose weight in the kitchen, and gain fitness in the gym – meaning that even those who don’t/can’t exercise at all can lose weight by watching what they eat, not how much they exercise. (We’d have to exercise like crazy just to work off the calories consumed in a bag of chips, for example – compared to avoiding those chips in the first place!) But like all major changes in life, it’s always best to start small with small steps even if it’s a daily walk around the block to begin with. It took you a long time of feeling miserable to get to this point, so losing weight/getting more fit isn’t going to happen overnight. You can do this!! Best of luck to you…

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      1. I did not go to rehab only because I couln’t, so I dragged out my treadmill and start walking but that seemed to bring on angina. I have a mini trampoline and I started to jump on that. Nothing strenuous and started to raise my arms over my head as I jump. No angina! So I try to jump at least 15 minutes a day. I feel that it has strengthened me, so maybe Jennifer could try the mini trampoline.

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  7. Q: Have you ever experienced a fear of dying during a medical crisis?

    I did not experience a fear of dying during the heart attack… It was last year during the night before Father’s Day (I was struggling to cope with my dad’s suicide). I spent 3 hours in horrible pain, vomiting, lying on the bathroom floor.

    I did not experience a fear of dying… because I was kinda hoping to die and talk to my father! I do not believe in the afterlife or anything, but (maybe the lack of oxygen) I was “looking forward” to dying: for the pain to stop and to know the truth/ understand why my dad did it… I was talking to him in my head, and was relieved the pain was going to stop – it was like being crushed by a car; I used to think giving birth was the worst pain I experienced… not anymore!

    I was not terrified of dying, I was welcoming the end, I just wanted the pain to cease. :/

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    1. Thanks for sharing that perspective, Karyn. That shows the power of pain (both physical and emotional) when death seems like the way to release that pain. My condolences to you and your family on your father’s death.

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