Moral injury in cardiac misdiagnosis

by Carolyn Thomas   ♥  @HeartSisters

After surviving a misdiagnosed heart attack, I came home from the CCU (the intensive care unit for heart patients) feeling afraid to go to sleep at night. I felt a cold creeping dread that I would suffer another heart attack. Probably tonight. And probably fatal this time. I have since learned from many other freshly-diagnosed heart patients how remarkably common it is to be afraid to go to sleep in the the early days and weeks – if we no longer feel certain that we’ll be able to wake up.

The worst part was that even when I finally did fall asleep, I had frequent nightmares. They were always the same: having a heart attack on a plane (vividly reliving what had actually happened in real life during my last late night flight home from Ottawa to Vancouver).

But in these scary dreams, I was the only passenger on the flight. The cockpit door was open. I could see the empty seats where the Air Canada pilots should be at the controls. Just me, flying alone in an empty Boeing 787 at 40,000 feet. A terribly frightening nightmare. 

My physicians suspected that my nightmares and other distressing symptoms were consistent with Post-Traumatic Stress Disorder (PTSD).

PTSD is a debilitating condition that can develop after we experience or even witness a dangerous, frightening or possibly life-threatening stressful event that is outside the range of what’s considered to be a normal human experience. See also: Not just for soldiers anymore:  PTSD in heart patients.

A U.K. study(1) led by Dr. Susan Ayers published in the British Journal of Health Psychology found that 16% of heart attack survivors studied met clinical criteria for acute PTSD, and a further 18% reported moderate to severe symptoms. As Dr. Ayers explains:

“Feelings of fear, anxiety and depression are common after a life-threatening cardiac event. The findings of this study suggest that a high proportion of survivors experience very severe distress symptoms such as frequent nightmares or flashbacks, or a constant reliving of the fear, helplessness or horror felt when they were having the heart attack and believed they were dying. This has the potential to impair recovery, quality of life and threaten future health.

“It is vitally important that all heart patients are screened for psychological distress, such as anxiety, depression and PTSD, and offered appropriate treatment if necessary.”

Any cardiac event is severely distressing – even when it’s swiftly diagnosed and treated – but a cardiac event that is misdiagnosed is quite another level of distress.

For example, here’s how I could personally relate to Dr. Ayer’s list of those PTSD symptoms:

• feeling abandoned by the Emergency physician who misdiagnosed me
• being sent away without getting help
• textbook cardiac symptoms of central chest pain, nausea, sweating and pain down my left arm being casually dismissed as just acid reflux
• fearing that a second heart attack was imminent
• reliving all of it in ongoing nightmares

The National Center for PTSD suggests that there’s an overlap between PTSD and a condition known as “moral injury”.(2)  Both can begin with an event that’s life-threatening or harmful. The sense of betrayal and loss of trust that are experienced with moral injury are also common features of PTSD.

Trusting that our doctors will believe our troubling symptoms, and ultimately correctly diagnose the problem causing those symptoms, and then recommend appropriate treatments for the problem – these are the simple basics of health care relationships. But imagine being a patient living with a rare disease, in which patients average five years – and tragically, sometimes far longer – between suffering their first symptoms and an ultimate diagnosis, as reported in an Eurordis survey of 10,000 such patients representing over 1,600 different rare diseases.(3) 

Yet it may be somehow easier for us to understand the huge challenges of solving rare disease mysteries given the definition of what “rare” means. \

Heart disease, however, is the leading cause of death in women – so not “rare” at all. Yet we know that women are significantly more likely to be (as the Heart & Stroke Foundation bluntly described in their report called “Ms. Understood “) under-researched, under-diagnosed, under–treated, under-supported and under-aware, adding a stunning observation that surely sums up moral injury whenever female heart patients are misdiagnosed:

“Women’s hearts are victims of a broken system that is ill-equipped to diagnose, treat and support them.”

Early studies on moral injury mostly involved people who had served in military combat. The National Center for PTSD reported that moral injury can also occur in the context of many other types of traumatic events.(4)

“In traumatic or unusually stressful circumstances, people may experience or witness events that contradict deeply held moral beliefs and expectations.  They may also experience betrayal from others in positions of power or peers that can result in adverse outcomes. Moral injury is the distressing psychological, behavioral, social, and sometimes spiritual aftermath of exposure to such events.”

Among healthcare workers,(5) moral injury may occur when making difficult decisions related to life and death triage, or poor resource allocation, or when struggling with the belief that they should have been able to save a patient’s life. During a medical crisis, healthcare workers may also witness what they perceive to be unjustifiable or unfair acts or hospital policies that can lead to a sense of betrayal.

Moral injury can also contribute to feeling guilty about surviving when others are dying. I often wonder, for example, how I could still be alive 16 years after a “widow maker“ heart attack – a medical crisis that I know many do not survive (as its male-centric name suggests).

Researchers have suggested that current trauma-focused PTSD treatments known as Prolonged Exposure (PE) or Cognitive Processing Therapy (CPT) can often be effective for patients with moral injury.(6)

In PE, patients have the opportunity for emotional processing and gathering context that may help them make sense of their trauma. CPT is designed to help patients work through beliefs that generally underlie betrayal or shame – for example, if the patient “should” have done something differently during the trauma. CPT also addresses beliefs around betrayal and trust.(5)

The Australian Heart Foundation also has some sound advice to help in getting through upsetting post-diagnosis distress:

“Find someone to talk to. It could be someone on your healthcare team, a professional therapist, an understanding family member or close friend. Keep active and maintain your connection with family and friends. It can also be helpful to meet other people who’ve already been through this – which is another good reason to join a cardiac rehab or support group.”

And the National Center for PTSD also offers a number of useful phone apps to help provide self-help, education and support from the comfort of your home following trauma  (including CPT Coach and PE Coach).  

 

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1) Ayers, S et al. (2009). “A preliminary study of negative appraisals and dysfunctional coping strategies associated with post-traumatic stress disorder symptoms following myocardial infarction.” British Journal of Health Psychology, 14(3), 459-471.

2. Griffin, B. J., Purcell et al.  (2019). “Moral injury: An integrative review”. Journal of Traumatic Stress, 32(3), 350-362.

3. Eurordis Survey. “The Diagnosis Odyssey of People Living With a Rare Disease: Key Findings from a ‘Rare Barometer’ survey, May 2024. 

4. Campbell, S. M.et al.  (2016). “A broader understanding of moral distress.” American Journal of Bioethics, 16(12), 2-9.

5. Greenberg, N. et al. (2020). “Managing mental health challenges faced by healthcare workers during covid-19 pandemic.” BMJ, 368, m1211.

6. Held, P et al. (2018). “Using Prolonged Exposure and Cognitive Processing Therapy to treat Veterans with moral injury-based PTSD”. Cognitive and Behavioral Practice, 25(3), 377-390.

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Q:  How has your own quality of life been affected by a cardiac diagnosis?

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NOTE FROM CAROLYN:  I wrote much more about mental health challenges associated with a cardiac diagnosis in my book, A Woman’s Guide to Living with Heart Disease. You can ask for it at your local bookshop (please support your independent neighbourhood booksellers) or from Amazon online (paperback, hardcover or e-book) – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).

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Image: StevePB