“Jean died last night.”
That was my first email message of the morning. It came from Jean’s daughter. Jean (not her real name) had been in hospital being treated for heart failure. She didn’t want to be in hospital, to be sure. It took her daughter, her family physician and I to convince her that she could no longer manage on her own, up most of the night sitting in her chair panting for breath, the skin of her swollen legs beginning to break down.
Although I wasn’t her attending cardiologist during this admission, I had treated her for many years and dropped by to visit with her the day before. Propped up in her high backed hospital chair with her feet elevated, she almost reluctantly admitted she was feeling a bit better. Her legs were clearly less edematous. But she didn’t think she was going to go home this time and that, she said, was OK. She had made her wishes clear to all. Her “comfort care” status was well documented.
Although in her late 80’s, Jean retained a perceptive intelligence and disdain for convention. Anything she didn’t approve of was quickly dismissed as “nonsense”. The word that immediately comes to mind to describe her is “feisty”.
She’d immigrated to Canada with her husband and infant daughter shortly after the second world war. They worked various jobs eventually opening and operating a successful small business . When her husband passed away, she operated the business, eventually turning it over to her daughter.
Jean had rheumatic fever in her youth which left her with valvular heart disease. In the early part of the twentieth century, rheumatic mitral stenosis was a major cause of morbidity and mortality in young women, resulting not only in heart failure but also stroke due to cardiac thrombi precipitated by the onset of atrial fibrillation, often during pregnancy. Many years ago, when she began to develop symptoms, Jean underwent a closed mitral commissurotomy. This was one of the first surgical approaches available. The surgeon would attempt to break the fusion of the mitral leaflets caused by the rheumatic inflammatory process, either with dilators or a finger passed across the valve.
This approach, which sounds rather crude to us today, was very effective in relieving symptoms and is the same basic approach used today with catheter based balloon valvuloplasty.
She did well for many years after the commissurotomy and even had a baby despite conventional medical wisdom at the time advising against pregnancy. Her mitral stenosis gradually progressed, and she went on to have a valve replacement with a mechanical prosthesis about 25 years ago. Over the years, she evolved varied and expected cardiac manifestations including atrial fibrillation, progressive aortic valve disease, coronary disease and, most recently, right-sided heart failure. She faced each challenge with grace and acceptance. As she said many times, she never expected to live to be an “old lady” and was grateful for whatever treatments were available to her. But, in recent years, she was quite clear that there would be no more interventions, catheterizations or surgeries. The goals of care were very clear: “I’ll take whatever pills you suggest, just keep me independent and out of hospital”.
And independent she was. In her own home until moving into a rather posh retirement complex a few years ago. I attended a reception in her honour organized by her daughter and friends for her 85th birthday. She was the epitome of charm, holding court like a duchess at a ball.
Her daughter’s message was accompanied by a request to call. She let me know how very important it was that she was able to visit with her mother the evening before she passed away. Given the pandemic restrictions, what they both feared most about the hospitalization was the separation from each other. This, no doubt, was the main reason they delayed so long in asking for help. However, the medical and nursing staff went out of their way to make arrangements for them to see each other. She asked me to express how important this was to them and to pass along their gratitude, which was one of the motivations for this article. What may have seemed to be a small act of kindness was highly meaningful.
The other objective of this article is to highlight the impact this pandemic is having on management of chronic disease and end-of-life care. Jean’s reluctance to come to hospital despite a clear need for help is typical of many patients suffering from cardiac and other chronic diseases.
A recent article examining emergency room visits for acute heart failure found a 43.5% reduction in 2020 compared to the previous year, and a 39.3% reduction in hospital admissions (Frankfurter et al. Can J Cardiol 2020;36:1680).
The authors conclude with this important observation:
“The precipitous decline observed in ADHF (acute decompensated heart failure)-related ED visits and hospitalizations raises the timely question of how these patients are managing beyond the acute-care setting and reinforces the need for broad public education on the continued availability and safety of emergency services throughout the COVID-19 pandemic.”
This issue is not limited to heart failure patients. In fact, while preparing this article, I was contacted by another patient with known multi-vessel coronary artery disease and previous myocardial injury who was awaiting much needed surgical intervention. He’d been experiencing chest pain for two hours and was calling to ask whether it was “safe” to go to the emergency department. He’s now being admitted awaiting surgery while being treated for his unstable ischemic syndrome.
In an examination of patients with coronary artery disease presentations, Natarajan et al (Canadian Journal of Cardiology Open 2020: 678e683) reported both lower rates of myocardial infarction and delays to coronary angiography in 2020 compared with the previous year.
Clearly, the coronavirus has not reduced the prevalence of either heart failure or coronary disease. It has, however, imposed barriers to access. Although we do not yet have precise information as to the nature of these barriers, it’s apparent that each step along the path from initial symptom assessment to final treatment is made more difficult by necessary pandemic precautions, and that patients, advised strongly to isolate, are understandably more fearful about venturing into emergency departments and diagnostic facilities.
And so, the accounts of these two patients have much to teach us.
It’s important to remember that, even during a terrible pandemic, most of the patients we’re treating do not have COVID-19. Most of them are suffering from the same medical and surgical conditions they’ve always had, and these diseases don’t wait for the pandemic to pass. However, the pandemic does impose barriers to their ability and/or willingness to access care. As the medical and public health communities message the public about the need to adhere to all the preventive measures, it’s important also emphasize the importance of continuing to manage all health concerns and work to diminish access barriers wherever possible.
As always, our patients are our greatest teachers. Jean taught me and the countless learners she was always pleased to engage along the way much about the natural history, features and available treatments for rheumatic heart disease. That’s a legacy that will benefit many future patients. For that, she deserves our gratitude, and the kindness shown her during her final admission seems well earned.
I will miss her.