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 (physicians, 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 physician participants in the 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 family caregivers used words like “fear” and “anguish” to describe their own response to their loved one’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 physicians, 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.”
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.
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 physicians 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 diagnosis (heart-related or otherwise), they are the ones who go home from the hospital or the doctor’s office 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 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 released as a pre-print in June 2020, 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 too hard to keep the blood flowing to the rest of your body.”
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?