by Carolyn Thomas ♥ @HeartSisters…
Just kidding about that title, dear readers! There’s no bar involved in this story. I couldn’t help myself. But in this recent heart failure study out of Milan, Italy, a unique story-sharing experience evolved among three distinct stakeholder groups (patients, family caregivers and physicians), each guided by the concept called Narrative Medicine.(1)
The Italian researchers asked participants within these three interconnected groups of people to describe in their own words:
- What is it like to be living with heart failure?
- What is it like to be a family member caring for the person with heart failure?
- What is it like to be a physician providing medical care to this person? . .
The research team then analyzed the narrative points of view for similarities and differences. About 75 per cent of the patients in this study were male, the mean age was 68, the majority of the family caregivers were spouses and/or daughters, and all participants (cardiologists, patients and caregivers) completed their contributions anonymously. Most patients had been diagnosed with heart failure before age 60, so already had years of lived experience with this condition.
One of the most striking observations in the analysis highlighted “a strong difference between how heart failure is perceived by patients, by their caregivers, and by the heart failure specialists.”
This is hardly surprising to Dr. Rita Charon, one of the pioneers in the field of Narrative Medicine, and author of the book Narrative Medicine: Honoring the Stories of Illness. She explains the power of patients’ stories in this way:
“While doctors are knowledgeable about disease, they do not adequately appreciate that illness changes everything for the patient.”
When researchers analyzed the narratives, they observed the extent of the burden of this illness on the patient and the entire family, but particularly on the designated caregiver:
” Through the integration of the three points of view, the burden of illness on the family emerged from understanding the key role of the caregiver in the daily management of the complex care of heart failure. The caregiver narratives exemplified the sacrifices they had made.
“Narratives revealed two parallel lives: the life of the patient, and that of the caregiver who is affected by the need to look after a family member.”
Yet most of the cardiologists in this study described the family caregivers of their patients as “secondary” or “background figures” and as useful helpers only “if the patients failed to comply with treatments”.
Over 80 per cent of the patients and family caregivers used words like “fear” and “anguish” to describe their own response to the patient’s initial diagnosis of heart failure. Even years after first hearing that diagnosis, over 40 per cent of family caregivers still felt “fear of sudden death of their loved one”.
About 70 per cent of the cardiologists, by comparison, used the word “optimistic” to describe the patients’ initial diagnoses; physician narratives highlighted “improvements obtained with treatments.”
And 48 per cent of patients preferred to have more daily autonomy, describing their family caregivers as being “annoying”, and “more afraid than necessary.”
If you heard the scary words “heart FAILURE“ aimed in your direction, you’d be understandably struck by the unfortunate and inaccurate suggestion that your heart is “failing”* – and it’s also why I have tried for years to urge cardiologists to stop using this cruel and hurtful name. For a list of possible alternatives, see: Is it Finally Time to Change the Name ‘Heart FAILURE’?
One of my longtime readers, for example, told me about the day she heard the words “heart FAILURE” tripping lightly from a cardiologist’s lips for the first time:
“Failing? My heart is failing?!? I left his office and then very slowly walked out to the parking lot, but I was too afraid to get into my car and drive home. How could I possibly live if my heart was failing? I truly expected to drop dead at any moment.”
The reason that this reader felt so bleak is the cruel name of the condition itself. We need to change the hurtful name heart FAILURE, which is not even an accurate descriptor of the condition. See also: “Would You Drive Your Car if Your Brakes were FAILING?”
Dr. Charon, who has been a Professor of Medicine at Columbia University in New York City since 1982, explains in her book why it’s so common for physicians in general to view the experience of illness differently than their patients and/or family caregivers do:
- Patient attitudes to illness and mortality are coloured by their previous life experiences, while doctors’ attitudes are not.
- Doctors often view illness as a biological phenomenon that needs medical intervention, while patients tend to view illness within the framework of their entire lives.
- Because patients don’t have the medical knowledge that doctors do, their concept of illness – and particularly what has caused this illness – can also differ widely.
- Illness makes patients feel vulnerable and fearful. They might blame themselves if an illness is perceived as being self-inflicted. But if the outcomes are not good, they might blame the doctor. And doctors can blame patients for being demanding, or for not looking after themselves. Emotions from both sides can affect the illness experience for both sides.
I once wrote this for the British Medical Journal (BMJ):
“Physicians and other healthcare professionals inevitably report a “Eureka!” moment when facing their own health crises. They announce to their colleagues, for example, that hospitals are demoralizing, medical procedures frightening, lack of dignity embarrassing, symptoms distressing, dependence humiliating, the simplest of tasks exhausting, anxiety relentless, their past as a healthy person but a dim memory, and a future looming bleak and uncertain.
“Who knew?”
At first blush, the observations of the Italian researchers may seem discouraging because of the wide gap between how patients and/or caregivers viewed their experiences, and how physicians were interpreting the same experiences.
But this might just be the beauty of Narrative Medicine, as the researchers concluded:
“All points of view involved in the pathway of care help to reveal common issues as well as possible interventions or solutions about living with a specific disease.”
Learning about differences helped to educate each of the 104 cardiologists who volunteered to participate in the study. The patient participants in turn learned how highly stressful this diagnosis has been to affected family members. And the caregivers learned that their genuine concerns may come across to the patient as “annoying”.
As Dr. Charon wrote, the goal of Narrative Medicine is “to recognize, absorb, interpret and be moved to action by the stories of others.”
For over 20 years, she has urged healthcare professionals “to write personally about the dynamics between healer and patient, and to listen better to patients – thus improving the delivery of medical care.”
Those dynamics are important because of the inherently unequal burden that patients and families face with every life-altering diagnosis compared to health care professionals.
On the fateful day that a patient and the patient’s loved ones first hear that frightening new diagnosis (heart-related or otherwise), they are the ones who go home from the hospital or the doctor’s office feeling overwhelmed, trying desperately to make sense of a devastating new reality that makes no sense at all to them. Just as Dr. Charon wrote:
“Illness changes everything.”
Physicians, by comparison, are the ones who go home that evening to essentially the same home life they’d enjoyed the day before, and the day before that. See also: A Perfectly Ordinary Workday. Unless You’re the Patient
In the Italian study, however, only 26 per cent of patients and 16 per cent of family caregivers stated that they had been able to return to their usual pre-diagnosis life; 34 per cent of caregivers’ narratives described a return to most past activities as “impossible”.
Perhaps one day, Narrative Medicine will assume a more common role throughout all medical practice, one that helps to gently knit our respective extremes closer together.
♥
Image: Alexandr Ivanov, Pixabay
1. Testa, M. et al. The Burden of Heart Failure: Physicians’, Patients’, and Caregivers’ Perspectives Using Narrative Medicine” was published in June 2020 in the Journal of Medical Anthropology.
2. Zaharias G. “What is Narrative-Based Medicine?” Canadian Family Physician/Médecin de Famille Canadien, 2018. 64(3), 176–180.
♥
* What is heart failure?
The Ottawa Heart Institute defines heart failure in this way:
” Heart failure does NOT mean that your heart will suddenly stop working or that you are about to die. It means that your heart has to work harder to keep the blood flowing to the rest of your body.”
♥
GOOD NEWS DEPARTMENT, December 2023: The British Medical Journal has published my Editorial called “Heart Failure: It’s Time To Finally Change the F-word“ in BMJ Open Heart. This project began as a lowly heart patient’s opinion piece, but ended up as an Editorial (in my experience, it’s very rare – in fact, almost unheard of! – to invite a patient to write an Editorial in a medical journal). Thank you to the brave BMJ Open Heart editors, reviewers and very helpful staff for making this publishing milestone possible! ♥
NOTE FROM CAROLYN: I wrote much more about becoming a patient in my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press). You can find this book at your library, at bookstores (please support your local independent bookshop), or order it online (paperback, hardcover or e-book) at Amazon – order it directly from Johns Hopkins University Press (use their code HTWN to save 30% off the list price when you order)
Q: Is there a part of your own patient story that you wish your physician or family could understand better?
.
See also:
Chronic heart failure: the true heartache of living with “FAILURE”
Is it finally time to change the name ‘heart FAILURE’?
A perfectly ordinary workday. Unless you’re the patient…
When doctors use words that hurt
Two ways to portray heart failure. One of them works.
Would you drive your car if its brakes were “failing”?
Is heart “FAILURE” out? And heart “FUNCTION” in?
Heart Sisters 
Narrative medicine intrigues me because I see it as a pathway to improve patient care. Sometimes there is a very human element missing. The words used to describe health matter.
LikeLiked by 1 person
I agree, Kristie. When the physicians in this study tested so poorly for being able to even imagine what their patients were going through (e.g. 80% of patients and family members used words like “anguish” and “fear” to describe their response to diagnosis while 77% of physicians used words like “optimistic” to describe their patients’ responses!), it demonstrates clearly that this “human element” is sorely absent for far too many of them.
Words DO matter, especially when they are listened to.
Take care, stay safe… ♥
LikeLike
This is a great post that touches on so many things.
My dad died in 1996 from congestive heart failure when he was 63. Now I am 63 and have two stents, and while I’m not freaking out about my age, I do think of this from time to time in the context of “life is unpredictable and you have no idea what will happen or when.”
Granted, he was much worse off than I am — a lot of circulatory issues in his legs, lifelong smoker etc. I do get concerned when my feet and ankles swell up, which is often in this heat. But I had some testing done recently and everything looks good, although I do worry when I feel like I can’t breathe after walking. I think wearing a mask has a lot to do with that though!
The term that scares me lately much more than “heart failure” is “caregiver.” I became my husband’s caregiver after his car accident in 2009 when he suffered a broken femur and hip that required a month in the hospital and rehab and 2 reconstructive surgeries. It was the most exhausting thing I’ve ever had to go through. Today he is absolutely fine, but at the time the whole trauma was overwhelming to me. I recall that our family doctor ordered a temporary handicap parking permit for him and my reaction was “Temporary?! But this is going to affect our lives forever!”
Now my mother-in-law is fast approaching 80 and we have no idea what to do with all her health issues and the fact that she shouldn’t be living alone anymore and refuses to seek medical care for anything. She has a lot of trouble walking but refuses to use a walker even though one doctor told her years ago to throw away the cane. She will not listen to reason or common sense or what any doctor says, she just goes on doing things they have told her not to do.
We can’t even discuss things with her doctors because she won’t even tell us who they are. She knows that before long some doctor’s diagnosis will take away all her independence. The whole situation is very complex and completely lose-lose for all our family since none of us can stand being around her very long (2 of my kids get anxiety issues and my sister in law gets migraines when around her).
I am most terrified that she will break her hip. At that point hard decisions will have to be made and she will be combative about any of them.
So after 37 years of verbal abuse from her and dealing with her controlling and angry behaviors, the thought of becoming her caregiver is giving ME panic attacks.
Last week she suggested that we should set up a bedroom for her so she can move in with us. I was shocked because she has said more than once that she would rather be homeless than live with us (meaning me — she is very critical of me). I absolutely cannot do it! We would drive each other crazy — she has said this herself. It might seem like the logical solution on one level but it just won’t work on so many other levels.
Caregiver stress is huge no matter what the situation but when you have years of resentments that have built up, it really complicates things.
LikeLiked by 1 person
Hi Meghan – this is a no-win situation from the get-go, isn’t it? I’m reminded of a friend’s situation, similarly worrying about “one day” when her Mum would need far more help but would fight any help offered (as she had fought against everything and everybody in her entire life who said anything she didn’t want to hear!) Her fear was that ornery miserable people tend NOT to turn into nicer people as they age.
She spent decades fretting about this: how on earth would she possibly cope? how could she not be her aging mother’s caregiver? what kind of a bad daughter would she be if she refused?
Then one day, suddenly and quietly, her mother died of a massive aortic aneurysm – and that was the end of the family worrying about their caregiving future.
My point: you and your husband are the decision-makers here, this is YOUR home, and although you may quite understandably fear what MIGHT happen if she gets worse, right now you have no idea what will actually happen. Ever! Try to limit the time and energy you voluntarily donate to fretting about a scenario you have absolutely no control over.
Take care, stay safe… ♥
LikeLike
Carolyn: This post captured a long standing issue I’ve had with traditional medicine— “While doctors are knowledgeable about disease, they do not adequately appreciate that illness changes everything for the patient.”
(I would say this also applies to most folks and family who have not been through chronic medical issues.)
As you know, my heart apparently failed fifteen years ago, but apparently it wasn’t listening to the doctors…. Looking forward to thirty years from now when they finally change the name to something more accurate and less depressing…
Forwarded this one on to friends and family, and linked in on my Facebook site…
Thanks…
LikeLiked by 1 person
Hello Dr. Steve –
“Illness changes everything for the patient.” That really struck me, too. That sums it all up. EVERYTHING changes as soon as we hear the diagnosis (until then, I suspect most of us are hoping that even the most troubling symptoms are probably ‘nothing’ and will just go away (…kind of like how your president is predicting that COVID-19 will just magically “disappear”….)
But once we actually hear the diagnosis (especially one that is as emotionally damaging as Heart FAILURE) we cannot un-hear what we now know.
That’s why it makes me crazy when physicians (and others e.g. all the tech startup hypemeisters in Silicon Valley I’ve met over the years who are going to ‘change healthcare as we know it’ by inventing a new app or a beeping flashing pillbox!) insist that “we are all patients”. NO! THEY’RE NOT – until they actually become patients and have an “illness that changes everything...
I remember you telling me once that you were threatening to write another book, something like How To Thrive When All of Your Body Parts are Falling Off. Any chance you’re working on that one, since you’re still around and have at least another 30 years of happy living ahead of you? 🙂
Thanks for sharing this post. Take care, stay safe… ♥
LikeLike
Hi Carolyn,
This was a very insightful article. I am one of those patients on the opposite end of that discussion. My cardiologist assumed that I wouldn’t understand what heart failure means. He didn’t expect me to get up and walk around on my own 24 hours after suffering an AMI/STEMI.
Oh I was told that I had had a massive heart attack and my heart was severely damaged and they couldn’t fix it. He told me that I would need a transplant in the next three years but he didn’t tell me I had heart failure. I heard the call of code black and a nurse found me in the hall and told me I had to return to my room for a little while and my door had to remain closed until she opened it. Someone in my arm of the 5th floor had expired and was being moved. The nurse came back as promised opened my door and said I was free to finish my walk. I thought that it was kind of funny that I’d only seen one other patient walking. I went out the door for my area and realized I didn’t know where I was and walked back to read the door. The door read Arm 2 Heart Failure Unit and I freaked out.
Not knowing is worse then knowing and renaming it will only lead one back to heart failure.
LikeLiked by 1 person
Hi Robin – the issue in your case was not only the diagnosis “heart failure” – but the WAY you first saw those words on the door sign of your hospital ward. If your cardiologist truly believed that you were somehow incapable of understanding any diagnosis, it means he wasn’t effectively communicating that diagnosis at all. Sounds like he had no trouble discussing your “massive heart attack” or your “heart transplant” and other outcomes that would also be difficult to talk about…
Yours is also a perfect argument re why the name ‘heart FAILURE’ should be changed. Any medical condition whose name cannot be said aloud because it might be too traumatic, or patients might be “freaked out” if they hear it is a condition that absolutely needs a new name.
You are correct: not knowing is far worse than knowing – but in the case of heart FAILURE, that name is inherently inaccurate in the first place. The heart is NOT “failing”. It’s an incorrect label that is confusing and cruel and outdated – and once it’s appropriately re-labelled, nobody should ever have to encounter that term ever again – except in history books.
And the history of medicine already includes a long list of medical conditions that used to be called one thing, but are now called different things. Until 1982, for example HIV/Aids was known as GRID (short for Gay-Related Immune Deficiency, even though about half of the people identified with the syndrome were NOT gay). People who were developmentally or cognitively delayed were called “mentally retarded” at one time. Stroke was once known as “apoplexy”. Tuberculosis was called “consumption.” All are names that have been permanently changed over time.
Words matter. And sometimes words need changing.
Take care, stay safe… ♥
LikeLike
I am 100% with you about the words “Heart Failure”. I believe they put such a shocking spin on one’s current physical condition that it is hard for patient or caregiver to recover.
My cardiologist is very good about using the words Diastolic Dysfunction in my case.
I would say if there is one thing I would like my physicians to understand better it would be my fatigue, exercise intolerance and the absolute unpredictability of the degree of function I might have on any given day at any given hour.
I tell them how it feels, they look at the latest test results and I can read their reaction even if they don’t say it out loud: ‘Well you shouldn’t feel that way your tests look fine’ 🙄
Please, walk a mile in my shoes…. or maybe about a block and a half?
In my household, I am the patient and the caregiver of myself. I have no spouse. Which gives me one less person to explain my fatigue to! It took me a long time… but I am okay with my functionality.
I will say, one part of my story that my cardiologist understands totally is that as a retired ICU nurse, I want to know ALL the physiology behind my condition and the drugs I am taking even if I’m deteriorating.
Knowledge is my go-to comfort, and he provides that.
LikeLiked by 1 person
Hi Jill – “diastolic dysfunction” works! I love what you just wrote:
“… tell them how it feels, they look at the latest test results and I can read their reaction even if they don’t say it out loud: ‘Well you shouldn’t feel that way – your tests look fine’”
This is a textbook example of how physicians tend to treat according to numbers: if your “numbers” on test results look bad, they can believe your reported symptoms. If the “numbers” look good, they won’t. Yet we know that there are exceptions in which the numbers do not accurately indicate what’s really happening.
If only all physicians believed us when we tell them we’re sick!
It’s not just ICU nurses who need solid information! KNOWLEDGE is POWER! I’m glad that your cardiologist knows and respects that!
Take care, stay safe… ♥
LikeLike
Hi Carolyn,
Yes, when I first heard the words “heart failure”, I was shocked and expressed my dismay with such a diagnosis. I didn’t feel well but in my mind, I didn’t think my diagnosis could possibly be heart failure! It was the words of a cardiac nurse who said to me “Think of it as decreased heart function.” And for me, that truly describes my situation.
When I see “heart failure” listed on my medical history, I remind myself that my heart is working harder than normal but I’m not going to die anytime soon! I am getting on with living my life, doing what I have to to manage my diagnosis and not worrying about the ‘what ifs’.
My heart is damaged after a delayed mitral valve replacement – the valve slowly became more diseased over the years since a bout of childhood rheumatic fever.
Doctors always said my heart murmur was ‘normal’, my fatigue was probably stress or not enough sleep, my increasing shortness of breath and angina weren’t “typical” and yes, “You have a very enlarged right atrium but you shouldn’t be experiencing the symptoms that you are describing.”
The first cardiologist said I was “imagining” my symptoms! The second cardiologist said I was a “mystery’‘and “Are you having fun?” (i.e. you can’t be experiencing the symptoms you are describing and you need to just have some fun!) End of conversation!!
Thankfully, the third cardiologist I saw ordered a stress echo test which showed when I performed even mild physical exertion, my heart function went into the severe range! He was surprised but said “No wonder you are feeling these symptoms!” A few months later, I had open heart surgery and a subsequent pacemaker because of prolonged arrhythmia.
I am doing well, but my heart is damaged. I have an extremely enlarged right atrium, mild pulmonary hypertension and my heart muscle works harder than it should. I have low physical exertion tolerance and I still experience mild shortness of breath. I have occasional issues with edema but I’m thankful that I don’t require a handful of pills, at least at this point in time. I monitor my INR and as a result of the pandemic, I now have a meter to test at home. I watch my Vit K intake in relation to the warfarin dose because I’ll be on this anticoagulant for the rest of my life.
Although my family doctor refers to me as her ‘heart warrior‘ because of the progress I’ve made since surgery, sometimes I think about the possibility that an earlier diagnosis would have led to earlier valve replacement and a less damaged heart. Thankfully, I don’t dwell on that thought and instead, choose to live my life in the present.
Thank you for this blog Carolyn. It’s fabulous and I’ve followed you for years!
Janet
LikeLiked by 1 person
Lovely to hear from you again, Janet. Your story reads like a cautionary tale of what some heart patients go through on the road to finally landing an appropriate diagnosis. Being told that you are “imagining” your symptoms is sadly not uncommon – especially among women – but that reality doesn’t make such dismissal acceptable.
When I read your cardiac nurse’s translation that what you had is “decreased heart function”, it reminds me of my standard call to cardiologists to CHANGE THE NAME to something, anything other than heart FAILURE: if you mean something else, then come up with something else!
As I wrote in “Would You Drive Your Car if Your Brakes Were FAILING?“:
“Cardiologist Dr. David Brown told me that he often uses air quotes around the words “heart failure” to more gently communicate to his patients that he doesn’t really mean “failure”. But what other medical diagnosis requires clinicians to wiggle two fingers on each hand as air quotes?”
Many alternative names have been suggested for years – Harvard cardiologist Dr. Lynn Stevenson for example suggests “cardiomyopathy“ as one.
I’m so glad that you are choosing to focus on the present and not the “what if’s” of your long search for appropriate diagnosis and treatment.
Take care Janet and stay safe… ♥
LikeLike