Why patients hate the C-word

by Carolyn Thomas     @HeartSisters

Way back in 1847, the American Medical Association panel on ethics decreed that “the patient should obey the physician.” 

There may very well be physicians today – in the era of empowered patients and patient-centred care and those darned Medical Googlers – who glance nostalgically backwards at those good old days.

Let’s consider, for example, the simple clinical interaction of prescribing medication.  If you reliably take the daily meds that your doctor has prescribed for your high blood pressure, you’ll feel fine.  But if you stop taking your medication, you’ll still feel fine.  At least, until you suffer a stroke or heart attack or any number of consequences that have been linked to untreated hypertension.

Those who do obediently take their meds are what doctors call “compliant”.  And, oh. Have I mentioned how much many patients like me hate that word? 

Continue reading “Why patients hate the C-word”

How Minimally Disruptive Medicine is happily disrupting health care

by Carolyn Thomas    @HeartSisters

I’ve been on an adventure recently to a magical, faraway place. It was my second visit to the world-famous Mayo Clinic in beautiful downtown Rochester, Minnesota. My first trip there was exactly seven years ago as a freshly-diagnosed heart attack survivor. I had applied (and was accepted) to attend the annual WomenHeart Science and Leadership Symposium for Women With Heart Disease at Mayo Clinic – the first Canadian ever invited to attend. This is a training program that arms its graduates with the knowledge, skills and (most of all) Mayo’s street cred to help us become community educators when we go back to our hometowns.

Thus, a circle that began with me sitting in a 2008 training audience was completed as I became one of the presenters onstage in front of an audience of cardiologists at a Mayo medical conference on women’s heart disease. (Thank you Drs. Hayes, Mulvagh and Gulati for your persistent invitations!)  But long before I took the stage last weekend, I’d been invited to come to Rochester a day earlier to meet with some pretty amazing Mayo staff. Continue reading “How Minimally Disruptive Medicine is happily disrupting health care”

Which patients does the “patient voice” represent?

by Carolyn Thomas  ♥  @HeartSisters

There are patients. And then there are patients.  Let’s consider, for example, two friends of about the same age, same height, same size, same socioeconomic demographic – each one (in an amazingly freakish coincidence) a survivor of a similarly severe heart attack, admitted to the same hospital on the same day. Let’s call these two made-up examples Betty (Patient A) and Boop (Patient B).

Betty is diagnosed promptly in mid-heart attack, treated appropriately, recovers well, suffers very little if any lasting heart muscle damage, completes a program of supervised cardiac rehabilitation, is surrounded by supportive family and friends, and is happily back at work and hosting Sunday dinners after just a few short weeks of recuperation.

Boop, on the other hand, experiences complications during her hospitalization, recuperation takes far longer than expected, her physician fails to refer her to cardiac rehabilitation, she has little support at home from family, her cardiac symptoms worsen, repeat procedures are required, she suffers longterm debilitating consequences, and is never able to return to work.

Yet despite these profound differences, physicians would still describe both of these women with the same all-inclusive descriptor, “myocardial infarction” (heart attack).  Continue reading “Which patients does the “patient voice” represent?”

Kindness in health care: missing in action?

by Carolyn Thomas    @HeartSisters 

I don’t remember much of what happened during that fateful visit to the Emergency Department.  I remember the on-call cardiologist saying something to me about my “significant heart disease”. After hearing those words, I felt so stunned that – although I could see his lips moving and could hear sounds coming out of his mouth – he may as well have been speaking Swahili.  (Doctors, please remember this in the future when delivering life-altering diagnoses to your patients!)

What I do vividly remember, however, is a small but profound act of kindness later that day when I was brought to my bed in the CCU (the cardiac intensive care unit). Continue reading “Kindness in health care: missing in action?”

When babies with congenital heart defects grow up

by Carolyn Thomas    @HeartSisters

hands-105455_1280In 2005, it was estimated that for the first time in history, there are now more adults than children living with childhood heart defects. That sounds like good news to me, because it means that due to major advances in medicine over the past few decades, more than 90% of babies born with congenital heart disease are now surviving into adulthood. What it also means, however, is that as these babies grow up, they need continued and careful monitoring as heart patients.

One such baby was Aletha, one of my blog readers in South Dakota, now 36 years of age. Her parents, she says, realized soon after she was born that their newborn daughter had a problem. Pediatric cardiologists diagnosed baby Aletha with a heart condition called Bicuspid Aortic Valve Disease (BAVD).  Continue reading “When babies with congenital heart defects grow up”