by Carolyn Thomas ♥ @HeartSisters
When you need medical help, how does your family doctor decide which diagnostic tests to order for you, and which treatments to recommend based on those test results? Physicians are trained to rely on a type of professional playbook called clinical guidelines to help them make those decisions. But as Dr. Michael Vallis, a professor of family medicine at Dalhousie University in Halifax, described the problem family docs face with clinical guidelines:
“There’s just no way they can follow every single guideline. One of the biggest impediments to physicians following new guideline recommendations is that they’re overwhelmed.” .
Sometimes, there are simply too many guidelines, or too many individual recommendations to be truly practical. And if a patient lives with a number of chronic conditions (like heart disease plus diabetes plus high blood pressure plus arthritis, for example), their family doctor may have to access several guidelines at the same time. And some of these guidelines may even seem contradictory.
Guidelines do in fact change over time to keep up with emerging medical research conclusions. So how do our doctors ever stay on top of every emerging new practice guideline?
An example of this change is Hypertension Canada – an independent organization of clinical and scientific healthcare professionals with expertise in treating high blood pressure. Their guidelines previously recommended that low-dose aspirin (ASA) should be considered in all adults with high blood pressure who are 50 years of age or older to help prevent cardiovascular disease in the future.
But – NEWS FLASH! – in light of newer research findings on the risks of taking aspirin every day (major bleeding) vs. benefits (lower chance of heart disease), Hypertension Canada determined that the risks actually outweigh the benefits – and they removed this guideline recommendation in 2020. So low-dose aspirin is no longer recommended for primary prevention of heart disease in adults over 50 with high blood pressure.
It’s likely that physicians who are still routinely recommending low-dose aspirin to their patients for this specific reason may not have read those 2020 guidelines yet.
So many guidelines, so little time. . .
Another new guideline that’s important for heart patients is called C-CHANGE.(1)
First established in 2008, C-CHANGE produces a guideline that’s a subset of recommendations from Canada’s cardiovascular-focused guideline groups. The newest update released this year is their fourth so far – and (here’s the good news!), the team of physicians and researchers who drafted this updated guideline actually sought feedback from heart patients.
Basically, the 2022 C-CHANGE update includes a total of 83 recommendations, of which 48 are new or revised. They focus on what’s called “multi-faceted care” for people who are at high risk of cardiovascular disease – from preventive strategies to screening, diagnostic tests and treatments.
Recommendations include appropriate medications, but also these cornerstones of lifestyle behaviour change:
- healthy eating
- regular physical activity and exercise
- healthy body weight
- stress management
- reduced alcohol intake
- smoking cessation
That’s a pretty long list of recommended lifestyle changes based on the family doc’s risk screening assessment of each adult patient. And imagine the time requirements for busy family doctors tasked with adopting dozens of new recommendations?
While Dr. Michael Vallis calls C-CHANGE “a well-organized overview of guidelines on cardiovascular medicine”, he was realistic about its practical usage in family practice – and more importantly, the response to guideline recommendations from patients themselves.
He suggests, for example, that the problem with guidelines like the new C-CHANGE update (and with chronic disease management in general) is that recommendations also tend to assume that patients will be immediately on board with these recommendations.
“Clinicians too often prescribe drugs, for example, without first addressing the critical question of whether the patient intends to take these medicines as directed. Clinicians may presume that a patient is ready (immediately upon receiving a new diagnosis) to adapt and make needed changes in lifestyle, including following complex drug regimens.
There are many reasons, each one personal and individual, that patients like this are rarely found. I wrote about the PURE study (Teo et al, JAMA, 2013), here:
These researchers followed over 7,500 heart attack survivors in 17 countries. They found that:
• 48% of smokers continued to smoke
• 65% did not exercise
• over 60% did not improve their diet
• 14% had adopted not one single lifestyle improvement
So it’s safe to conclude that, generally, most behaviour change advice from our doctors does not seem to be working. See also: Living with the “burden of treatment”
As Dr. Vallis reminded his colleagues in a recent Medscape interview, there needs to be greater realization of the stages of acceptance that patients must work through following a diagnosis for a chronic disease.
“Physicians may describe patients as being in denial of their medical conditions, when what they actually need is help in adjusting to them.
“They’re not in denial. They’re just struggling to accept the diagnosis. They don’t want to be sick. Nobody wants to be sick. They don’t want to organize their life around their illness. They just want to be normal.”
Although we’re on the same team, physicians and patients sometimes have surprisingly different goals.
One interesting difference in our goals is that doctors often recommend what behaviour scientists call avoidance goals (“Do this so your test numbers won’t rise“). These are apparently far less effective than approach goals (“Do this so you’ll feel better) For example, I could decide to head out in the sunshine today for a brisk walk to help me ward off a future heart attack someday (an avoidance goal) or I could go for a walk so I can enjoy a seaside view (an approach goal).
Your family doctor wants your test numbers and your chances of worsening future outcomes to improve. Patients generally don’t care about numbers.
Rahul Jain et al. Canadian Cardiovascular Harmonized National Guideline Endeavour (C-CHANGE) guideline for the prevention and management of cardiovascular disease in primary care: 2022 update. Canadian Medical Association Journal, , 7 Nov 2022.
Q: Have you experienced that struggle to adjust to a new diagnosis?
NOTE FROM CAROLYN: I wrote much more about why women are not just small men in my book, “A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use the JHUPress code HTWN to save 30% off the list price).
Behaviour change: if it’s so ‘easy’, why do so many studies show it won’t last?
Why don’t patients take their meds as prescribed?
“To just be a person, and not a patient anymore”
Women, controversial statin guidelines, and common sense
New chest pain guideline: “atypical” is OUT!
Do you know the new heart health guidelines for women?
Can denial ever be a good thing for heart patients?
9 thoughts on “Why heart patients generally don’t say: “Doc, tell me what to do and I’ll do it!””
Oh for goodness sake, you’ve done it again, Carolyn!
Every time I wrestle with a decision about my heart health, you write a blog that addresses the issues. I’ve just been through much of what you’ve described, above.
Two years ago I was diagnosed with atrial fibrillation. I worked with the local a-fib clinic, my GP, and a cardiologist to come up with a plan. All three of these “entities” are fantastic. They listen to my input and I’m very fortunate to be under their care.
Here’s how we navigated the guidelines:
1. Clinical guidelines say give the patient a beta-blocker to slow her heart rate and see if that stops the heart flutter.
2. But wait, I also have bradycardia, an abnormally slow heart beat. OK, let’s give you a very tiny dose of beta-blocker (half of the smallest pill – may as well just sniff the cap of the pill bottle) and let’s find another solution.
3. The conclusion: let’s try cardiac ablation; cauterizing the cardiac veins and other surfaces of the heart that are creating the electrical impulses that cause the flutter (probably an incorrect description of a-fib, but it makes sense to me!)
4. But wait, why not just give me a pacemaker? Well, in actual fact, my heart is healthy – no blockages and no discernible heart muscle damage. Sure, I had surgery in 2017 to fix an aneurysm in my ascending aorta, but that’s outside the heart itself, which is in good shape. A pacemaker takes over the beating of the heart. It’s better that my healthy heart gets back into normal rhythm and continues being the engine that drives the bus, not some outside power source. Ablation should achieve that.
5. But wait, there are two types of ablation, cryo (freezing the veins) and radio frequency (heating the veins) to cauterize them. Should we go with fire or ice? Ice it is: it’s less likely to damage the heart (see 4.). Had the ablation on Monday. Doc was happy with how things went. So far, so good.
6. But wait, this is a very “fiddly” procedure and there’s a 20 – 40 % chance that all the problem areas have not been cauterized. I’ll have to go back in for more ablation fun.
Navigating the guidelines took such a lot of brain-power on all our parts. I can only imagine what the medics wrestle with every day. It’s exhausting.
C-Change lifestyle guidelines were also part of my treatment. I exercise regularly (aerobics, weight training, and core work at least 3 times/week), don’t smoke, and drink only occasionally. Obesity is my issue. The cardiologist gave me an interestingly-nuanced weight loss goal. He recommended I get down to a certain body mass index (BMI) NOT that I lose a certain amount of weight. It was an important psychological difference and made the goal easier to achieve. Losing one pound of weight might be disappointing to someone who’s trying to get healthy quickly. However, that one pound creates a significant reduction in BMI and I felt more encouraged to keep going, even when I plateau-ed or gained weight. I’m 35 pounds down and it has been the easiest weight loss I’ve ever achieved.
Granted, my whole goal was to get the ablation done so I could feel better, so I was already motivated by an approach goal, but the doc’s recommendations helped me get on board.
PS – I was on aspirin until I got a-fib and was switched to a more serious anticoagulant in 2020. Feel like I dodged a bullet after reading about the aspirin guideline change here. Yikes!
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Hello Deborah and thanks so much for sharing such good (and nicely itemized!) examples of the varied and important decisions that relentlessly face many patients!
One thing that leaped out at me while reading your comments was how lucky you are to have such a good team (GP, a-fib clinic and cardiologist on the same page surrounding you! Many women tell me that they don’t have this kind of local support at all.
Congrats on the 35 pounds, and especially for arriving at an approach goal that is clearly working for you. (Imagine 35 pounds of butter lining your kitchen counter that used to be attached to your body!) Good for you!
Take care, and stay safe. . . ♥
I am so glad you are writing again.
There is the whole shock of realizing your life is changed with a cardiac diagnosis. And the overwhelm of all you are expected to do. Exercise although exhausted. Give up comfort food when you need comfort. Find a way to live with the fear that any minute your main motor might quit.
I recently had a scare that had me determined to cut out all sweets, exercise every day, meditate longer, make green smoothies. Yep. About a week before I moderated that thinking, “At 79, how long do I have anyway??” The meditation lasted. The green smoothies lasted. That’s 50%!
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Sara, you are not alone!! At 73 years old, I feel exactly the same. To me the only reason to try to live longer is to get better in touch with my inner self.
Meditation is something I cherish. Occasional 10 min walks and naps are right up there.
How do “they” expect us to exercise when we’re exhausted???
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Thanks Sara – you offered a reasonable compromise to the ENTIRE list of lifestyle improvements that you could have embraced. I predict that both your meditation and green smoothies will be with you for a long time, with or without your doctor’s guidelines. Sometimes we don’t know at first which changes will stick, and which ones will fall by the wayside.
Example: right after my heart attack, my daughter arrived home from university in a panic, worried sick about the news of her mother’s hospitalization. She sorted out my fridge and pantry, and tossed out anything that was too processed, too salty or too sugary, muttering throughout how “This stuff will KILL you, Mum!”
She memorized the hospital’s brochure on heart-healthy eating and then made a LIST for me. The one reminder she circled and underlined for me was “Eat fish 2x a week, preferably one containing good fats – like salmon” (knowing that I definitely wasn’t doing that already).
And here we are 14 years later – I’m still faithfully eating salmon twice a week (even if it’s just a simple salmon-and-cucumber sandwich for lunch, starring canned salmon) – and her list is still posted on my fridge door.
When your grown kids freak out at you, THAT is motivation!
Take care, stay safe. . . ♥
Dear Carolyn – thank you for your post which struck a nerve with me today.
I suffered a widow maker” heart attack on Christmas Day 2019 and was put on lifelong high dose meds which I didn’t really question.
I have since learnt that statins are likely inducers of diabetes (I am now pre-diabetic) and recent blood tests have now shown that my kidneys are struggling too (a problem that seems to go hand-in-hand with heart disease). I am trying to constantly keep up-to-date with what I should or should no be doing as regards meds, diet and lifestyle but it’s not easy!
I am not sure that patients and medical “experts” share the same goals when it comes to health. For me, living longer is not the priority. A good quality of life, however long, will always be more important to me. 😊
Judy (Rainham, Kent, UK) xx
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Hello Judy – a number of studies have indeed suggested an increased risk of Type 2 diabetes in women taking statins – most report that it’s a “small but significant” increase, but the increase is higher in those who are taking high-dose statins or are already at risk for Type 2 diabetes (e.g. sedentary lifestyle, obesity, poor diet, etc.) But many physicians tell us that statins are still worth the possible risk of diabetes compared to the lower risk of heart attack (but that’s not much reassurance for patients who have developed diabetes). You’re lucky in a way that the red flag of PRE-diabetes has been a cautionary warning – because it’s reversible.
You’re so right – it’s not easy to stay on top of what’s happening (or what might happen), and this is where education comes in.
Two credible resources I like that help to educate yourself are:
1. – Mayo Clinic’s “Five Tips for Taking Control of Diabetes”
– or 2. a useful Q&A article called “The PreDiabetes Diet” from Johns Hopkins University.
Take care, Judy – stay safe out there. . . ♥
Reading your article made me think of my struggle with participating in the recommended 30 min walk, 5 days a week.
Every day I see two women that do their 30 mins rain or snow. In cold weather, they take their walk in the car park underneath our building. Round and round the garage to get in their steps.
Also, the people on treadmills at the gym amaze me. I simply can’t make myself do it!!!
I will walk, but it must be for a reason other than my doctor’s recommendation AND it must be a day that I am not so tired that getting dressed to go for a walk is a feat of cardio exercise in and of itself.
It sounds so easy, but it really isn’t. I almost think that with any new medical diagnosis. Heck, maybe Pre-diagnosis we all need assigned a life-style coach. Someone versed not in disease but wellness, and how to help people make changes or adapt recommendations to their personal lives.
How many people know that three 10 min walks during a day is just as good as one thirty minute walk? How many people know it is okay to start with 5 mins a day or 1 min a day and go from there? How many know they are not failures if they miss a day?
Change is difficult, baby steps are OK and sometimes every step in and of itself deserves a celebration!
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I’m with you, Jill. I thought the recent recommendation shift to 3x 10 minute walks per day was brilliant for those who have trouble doing 30 non-stop minutes on any given day. It’s the SAME benefit, not an inferior benefit!
I do like moving my body – gardening, chasing my grandbabies, walking with friends, and my “Full Body Pain Relief Workout” free stretch video by Eccentrics (recommended to me by one of my blog readers after I was diagnosed with arthritis!) Some days I can do the full workout, sometimes not. It’s all good.
I liked your description of “celebration” for each step. I have a little calendar inside the door of my bathroom medicine cabinet. I used to give myself a shiny sparkly sticker (they must be as shiny and sparkly as possible!) on each day I did an hour of weight training or Zumba or a long walk. But on some days, I could barely get out of bed, never mind get myself to Zumba. So now I give myself sticker awards – ESPECIALLY if all I’m able to manage is a slow 10-minute walk to the village and back. Hurray for me! I did it!! When what I really wanted to do was hide under the covers. . .
Thanks for that reminder, Jill. Take care and stay safe. . . ♥