by Carolyn Thomas ♥ @HeartSisters
Anne-Marie felt nervous after she was discharged from hospital following triple bypass surgery. She had only her immediate family to help her at home. And as she described:
“I felt like I fell through the cracks. When I left the hospital, my husband was given a sick woman in a wheelchair and a big bag of pills. I had heard about cardiac rehabilitation, so I followed up to see if I could join a program as I thought this could help me get back on my feet.
“But I was told they would get back to me. When they finally did – 15 weeks after my operation – I was already back at work, so couldn’t attend. I wasn’t offered any other alternative.”
When the British Heart Foundation’s National Audit of Cardiac Rehabilitation report was published, a blunt analysis by their auditors concluded that “cardiac rehabilitation remains a Cinderella service.”
But the grim reality is hardly less Cinderella-ish on this side of the pond. And the reason so many freshly-diagnosed heart patients like Anne-Marie are falling through the cracks lies squarely with the doctors who are failing to refer their patients to cardiac rehab.
Research on the known life-saving benefits of cardiac rehabilitation is overwhelmingly positive. As I’ve written previously (here and here), the benefits of supervised rehab after a cardiac event include:
- reduced mortality (an impressive 26-40% reduction in cardiac mortality over the following five years – and that by the way, is a better outcome than that promised by taking statins)
- symptom relief
- reduction in smoking
- improved exercise tolerance
- cardiac risk factor modification
- overall psychosocial well-being.
In fact, for most heart patients, cardiac rehabilitation is one of the most cost-effective heart treatments available. In current practice guidelines of all cardiovascular societies worldwide, cardiac rehabilitation for heart patients (following heart attack or heart failure, bypass surgery, angioplasty to treat blocked coronary arteries, or heart valve replacement) is a Class I recommendation (which means that a procedure/treatment should be performed/administered).
So it might surprise you to learn that doctors themselves are a significant obstacle to cardiac rehabilitation participation, as described in this 2012 American Heart Association report published in the journal Circulation(1):
“Given the well-documented benefits of participation in cardiac rehabilitation, it is surprising how few eligible patients are referred to rehab. A number of recent surveys have reported referral rates in the order of 20%.(2, 3) The under-utilization of cardiac rehab is particularly apparent:
- in women
- in those with low socioeconomic status
- in African-Americans
- in the elderly
Each of these groups represents those who are significantly more likely to die within five years following a first heart attack.(4)”
So, let me get this straight.
Heart patients who are most likely to die within five years after their first heart attacks are the very ones who are least likely to be referred by their doctors to the cardiac rehabilitation programs that are most likely to reduce their mortality risk?
A Canadian study on cardiac rehabilitation referrals published in the European Journal of Preventive Cardiology confirmed this reality – particularly among female heart patients(6) :
“Overall, significantly more men than women are referred.”
Study author Dr. Sherry Grace of Toronto’s York University describes women’s referral reality (quite charitably, I thought) as simply “suboptimal”.
In fact, the failure of physicians to refer women patients to rehab is particularly dangerous, according to The American College of Cardiology – and thanks to my heart sister Jodi Jackson who reminded me of this fact! ♥
“Women with coronary artery disease who completed a 12-week cardiac rehabilitation program were two-thirds less likely to die compared to those who were not referred to the program. In addition, the mortality benefit derived from this evidence-based program appears to be much more striking in women than men with the same condition, yet referrals and attendance among women fall short.”
The trouble here is that supervised cardiac rehab programs are not simply drop-in exercise sessions.
Recuperating heart patients need a physician’s referral to register – which is why that puny 20% doctor referral rate mentioned in the 2012 report is so appalling.
A referral is not just a piece of paper or a tickbox to be checked off on a hospital discharge form, however. It requires strong endorsement of the program’s benefits by the heart patient’s doctor. Physician endorsement is in fact one of the strongest predictors of full participation in cardiac rehabilitation.
After my own heart attack, I was, like Anne-Marie, on my own when it came to cardiac rehab.
Not one doctor, nurse, resident, med student or janitor in the hospital’s Coronary Care Unit said one word about it to me before discharge. I knew nothing about this program, but after I was sent back home, I did find a little brochure about cardiac rehabilitation in the big pile of paperwork I’d been given before leaving the CCU.
I was curious, so I phoned the number on the brochure for more info. I was told the basic details (it turns out that rehab is widely available at several regional sites throughout my city), but was also told that I would first need a signed doctor’s referral letter, which I had to ask for during my next doctor’s appointment. Again, this entire process was left completely up to me – NOT as a result of any health care provider telling me at any time how critically important it was for me to sign up.
So although I was technically among those patients “referred” by a physician, my referral happened only after I did the sleuthing required to get one. And we already know what happens to the vast majority of heart patients who don’t or can’t do their own sleuthing.
No cardiac rehabilitation.
Oregon cardiologist Dr. James Beckerman is the author of the highly-recommended book called Heart To Start, in which he slams his colleagues who fail to refer their heart patients to cardiac rehab:
“It is bad medicine to withhold life-saving treatments, and many physicians are selling their patients short. Cardiac rehabilitation is the best medication that you will never find in a television commercial, and its only side effect is a better quality of life.”
And cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic in Rochester, Minnesota, has this important advice for all heart patients:
“If your doctor recommends cardiac rehabilitation, go.
“If you’re not referred, ask.”
. . . and then she adds this gem on Twitter (@SharonneHayes)
Some experts have been so alarmed by inexcusably poor doctor referral stats despite overwhelming evidence of benefit that in 2007, the American College of Cardiology, the American Heart Association and the American Association of Cardiovascular and Pulmonary Rehabilitation actually included cardiac rehabilitation referrals from inpatient settings as a performance measure for acute myocardial infarction (heart attack). Performance measures are a way that the quality of the health care provided to us is evaluated based on structures, processes and (arguably the most important) our treatment outcomes.
Seven years later, a 2014 follow-up study(5) published in the Journal of the American College of Cardiology found that cardiac rehabilitation referrals had improved since those new performance measures were introduced, but for some inexplicable reason they still remained highest in white males (once again confirming the 2012 stats in that Circulation report citing inadequate referrals among both women and non-white heart patients).
And worse, study authors also noted that, compared to all other acute heart attack discharge performance measures, cardiac rehabilitation referral still has the “lowest adherence among physicians”.
Why are so many doctors non-adherent when it comes to recommending a Class 1 guideline protocol to eligible patients? Why are so many of them just not getting it?
We’re not talking about isolated rural areas or small towns in which out-patient cardiac rehab programs may simply not be available at all. Here’s what we’re talking about:
- rehab programs that are already in place
- physicians who seem unaware of the importance of referring their heart patients to rehab
- unacceptably low physician referrals to those programs
- even among those lucky enough to be referred, significantly higher numbers of men referred compared to their female counterparts.
The puzzling explanation for this epic failure on the part of the very profession that heart patients are trusting to look out for them is this whopper, according to the 2012 AHA report:
“First, the benefits of cardiac rehabilitation are greatly under-appreciated in the medical community.
“Greater efforts are needed to educate healthcare providers and the public regarding the benefits of cardiac rehab.”
I had to go have a wee lie-down after I read that part of the study’s conclusions.
Does this sound to you as if researchers are actually suggesting that the brainiacs in the medical community are somehow ignorant about those well-documented benefits? If I were a physician, I might be feeling embarrassed right about now at this insinuation.
How is it even possible that physicians are failing to routinely refer patients to cardiac rehabilitation because they’re uneducated about rehab benefits – and whose job is it to educate them?
I have yet to hear of any physician who fails to routinely prescribe statins or beta blockers or other heart drugs to their freshly-diagnosed heart patients. Most docs seem extremely well-educated about the benefits of pharmaceuticals in cardiac care.
The Circulation study even attempts to absolve these non-referring physicians entirely by suggesting that, since docs don’t seem to be adequately “educated” about the importance of cardiac rehabilitation, maybe we should simply look to nurses to do this for them:
“Referral for cardiac rehabilitation has frequently been the responsibility of the physician, who, largely due to time constraints and lack of awareness of its value, has generally not been a strong advocate for rehab.”
Researchers note that perhaps nurses – both in acute-care hospital and home-visit settings – can help to impact these two important predictors(5) of successful participation in a cardiac rehabilitation program:
- the heart patient should be referred while still in hospital before being discharged back home
- the patient must understand the importance of participating in a cardiac rehab program
But personally, I’d like to now take this suggestion several steps further.
If you’re a nurse working with hospitalized heart patients, doing home visits post-discharge, or seeing them in out-patient clinics, please pro-actively preach the vital longterm importance of participating in a cardiac rehabilitation program to your patients.
If you’re a physician who up until now has been unaware of all the longterm benefits of cardiac rehab, please do some homework about local programs in your area, and don’t let another new heart patient leave your office before you enthusiastically promote the benefits of rehab to each one.
If you’re a recently diagnosed heart patient, please do not be content to sit around like Anne-Marie did, patiently waiting for a healthcare professional who may or may not be educated enough to refer you to cardiac rehabilitation. Be loud and clear in arranging a rehab referral from your physician, and don’t stop asking until you get satisfactory answers.
If somebody you care about has recently been diagnosed with heart disease, do whatever you can to support them to register for cardiac rehabilitation. And if you’re in Canada, find the closest program here – and then educate your own physician about it.
What if you live in an area that doesn’t offer cardiac rehab? Even if heart patients are not able to get out to a supervised group cardiac rehab program in person, home-based rehab shows promising results as well. A study published in the journal Applied Physiology, Nutrition and Metabolism, for example, found that heart patients even in home-based settings who stuck to their prescribed rehab plan achieved similar gains in cardiovascular fitness and overall cardioprotective benefits compared to heart patients attending non-home-based programs(8). Learn more from HealthLink BC about starting a modified walking/stationary bike program at home for heart patients.
Now let’s hope that physicians will not ignore this option as well.
(1) Arena, R et al. Increasing referral and participation rates to outpatient cardiac rehabilitation: the valuable role of healthcare professionals in the inpatient and home health settings. A Science Advisory From the American Heart Association. Circulation. January 30, 2012
(2) Suaya JA, Shepard DS, Normand SL, et al. Use of cardiac rehabilitation by Medicare beneficiaries after myocardial infarction or coronary bypass surgery. Circulation 2007;116:1653-1662
(3) Boyden T et al. Can increasing referral to cardiac rehabilitation improve participation? Prev Cardiol 2010;13:198-202
(4) Roger VL, et al., on behalf of the American Heart Association Statistics Committee and Stroke Statistics Committee. Heart disease and stroke statistics – 2011 update. a report from the American Heart Association. Circulation 2011;123:e18-e209
(5) Trends in Referral to Cardiac Rehabilitation After Myocardial Infarction: Data From the National Cardiovascular Data Registry 2007 to 2012. J Am Coll Cardiol. 2014;63(23):2582-2583
(6) Grace S et al. Effect of referral strategies on access to cardiac rehabilitation among women. European Journal of Preventive Cardiology August 2014 vol. 21 no. 8 1018-1025
(7) Dunlay SM et al. Barriers to participation in cardiac rehabilitation. Am Heart J 2009;158(5):852-859
(8) Kerseri Scane et al. Adherence to a cardiac rehabilitation home program model of care: a comparison to a well-established traditional on-site supervised program. Applied Physiology, Nutrition, and Metabolism, 2012, 37(2): 206-213, 10.1139/h11-151
Q: Did your physician strongly recommend cardiac rehab to you?
NOTE FROM CAROLYN: I wrote more about the importance of cardiac rehabilitation for women diagnosed with heart disease in my new book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press, November 2017).
21 thoughts on “Failure to refer: why are doctors ignoring cardiac rehab?”
When I had 4X CABG 10 years ago, my cardiologist wouldn’t release me back to work until I signed up for Cardiac Rehab. It was useful but a little uncomfortable as the only woman among a bunch of men. I recently had to have an endarterectomy due to 85% blockage in the right carotid. This time I initiated the conversation. I had heard that the Ornish program was now offered locally. The doctor agreed and I am participating. To my delight, there are a few other women this time around.
But I would like to point out some of the very real obstacles for many of us:
1. Working people — the timing of most programs is not friendly to working people. I am fortunate to have FMLA time available but it is still a source of stress to have to juggle the time required for the program and work. It would be helpful to have an evening/weekend option.
2. Copays –– If I had not already met my out-of-pocket requirement early this year due to surgery, I would be shelling out at least $70/week for the rehab program. This kind of financial burden makes the program out of reach for many and certainly creates a stressful situation for others. It is unrealistic.
I am a single, older homeowner who used to be a single parent. I know that we are legion but cardiac care doesn’t seem to have come to terms with this reality yet.
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Thanks for sharing your perspective here, Laurie. The two key reasons you list for not attending (timing of sessions plus cost) are common yet largely ignored by healthcare systems. The system will pay tens of thousands of dollars for a cardiac procedure but not pay for life-saving cardiac rehab! And providing sessions only during a 9-5 workday means many working people will essentially be unable to attend. Both of these barriers need to be addressed by the organizers of such programs.
Good article! Almost 30 years ago I assisted a Navy nurse in writing a report about the benefits of cardiac rehab. Those points remain the same today.
Here in South Carolina USA, it is routine to order rehab but there are obstacles to patients getting that care and much of it is access, rural issues and nearby locations to get ongoing care. Care can remain much longer when big issues here in the South have added problems with CAD, hypertension and diabetes.
Another big issue is ‘word of mouth’. Patients talk about their experiences in communities and the problem with Ann Marie’s story is that she went on to do well without cardiac rehab! She even returned to work. Too many patients have told me likewise: “I can handle my diet, emotions, exercise because my ‘friend’ did well with nothing else special”.
These are real access/compliance problems that exist in the patient population even if the doctor orders rehab. Many doctors, who know their patients decided not to do rehab, may not have stayed on, or even filled a BP/statin/diabetic prescription are ordering labs just to check compliance with therapies offered!
We do not think twice about rehab after or with an orthopedic issue/surgery/injury where referrals for Physical Therapy are needed because we are in pain/limping/backache but once they have ‘fixed’ our heart and that pain goes away, it is quite easy to forego Cardiac Rehab.
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Hi again Joan – lovely to hear from you again. You are so right – there are indeed a number of obstacles to attending and/or completing supervised cardiac rehab at the best of times – as I wrote about here and here (despite many studies showing impressive longterm cardioprotective benefits for rehab ‘graduates’). Women’s attendance at rehab programs is historically far worse than men’s – but that still does not excuse a doctor’s lack of endorsement.
Our physicians should NEVER become one of those obstacles to rehab participation by neglecting to refer in the first place. And those patients you mention with co-morbidities like hypertension or diabetes are the very ones for whom regular exercise is strongly linked to improved outcomes – so even better reasons for recommending rehab!
I am writing this after attending my aerobics class at my local senior center. I had a failed effort to open my totally occluded left anterior descending coronary artery.
I tried very hard to get advice from my cardiologists on how best to recover from the weakened state this disaster left me in. The only suggestion I received from the lead cardiologist was to walk. A reply like that leaves a lot of unanswered questions, how fast? how long? distance? uphill or just flat surface?
I bought a heart rate monitor and puzzled things out for myself. It took me nearly 8 months to feel anything like my previous self. I live in New York City, it shouldn’t be that hard to find an appropriate program.
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First of all, congratulations Nitro Mama on your efforts to puzzle things out for yourself. But heart patients should NOT have to do this on their own (especially in a well-served metropolitan area like NYC – good grief!) Your cardiologist’s advice to walk (as incomplete as that advice may have been) was certainly not as good as recommending a supervised cardiac rehabilitation program, but it wasn’t a bad start.
You might be interested, for example, in the remarkable research of Dr. Rainer Hambrecht in Germany, who found that patients with significant coronary artery blockages actually do better in longterm follow-up studies when they engage in regular exercise (in his case, using stationary bikes) compared to those having invasive cardiac procedures to help revascularize those blocked arteries. Opening a blocked artery simply widens an artery – it does not help to actually prevent another cardiac event like the regular exercise that you’re doing will. (More on this here: “The Cure Myth“). Meanwhile, keep up the good work!
Thanks for the reference to Dr. Rainer Hambrecht. At the time I underwent the procedure I did have a mistaken belief about what the benefit would be.
Congratulations for this interesting article. Unfortunately, suboptimal referral is not only a problem in North America but most likely all over the world.
On the other hand, there are exceptions. Our supervised exercise program here at CLINIMEX in Rio de Janeiro started in 1994 and so far has received more than 2,150 patients, about 40% of them women. A videoclip describing our exercise program is available on Youtube.
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Thank you so much for sharing this video, Dr. Araújo. Even without understanding Portugese, viewers can appreciate the impressive environment of your supervised cardiac rehabilitation program at CLINIMEX – and the patients even look they’re having fun. Obrigado!
I wouldn’t have known cardiac rehab existed had I not read about it online after returning home from the hospital.
I could have benefited from the safe exercise environment and some nutrition coaching. The first few post-heart attack/stent months were overwhelming.
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Hi C.J. – Overwhelming, indeed! It’s maddening to have been denied a proven therapy because you were not specifically informed about it by those caring for you. I’m not sure how long ago your heart attack happened, but I do hope you are getting some form of daily heart-healthy exercise now.
This is unbelievable that people are not automatically referred. I thought it was normal. My father had bypass surgery in 1976, and was put into a cardiac rehab class, and then 30 years later had a second bypass surgery. By then, the surgery etc was more routinized – he was put into a cardiac rehab class in the hospital (Hamilton, Ontario, Canada) and then a follow up class afterwards.
Not only did this meet physical needs, but also social needs (this was an unexpected side effect.) He went through the cardiac rehab with a cohort – and they have stayed together. Although they do not live too close together, they have created a “lunch bunch” group which meets on a monthly basis. This adds greatly to the quality of his life.
Because of his experiences, I thought such cardiac rehab was normal. Apparently not!
And my experience has been different. I did not have a heart attack, but cardiomyopathy.
As soon as I was diagnosed, I started asking for a cardiac rehab class. I was told that exercise wouldn’t help my condition – that it was all the meds. But my heart is a heart – and even if exercise doesn’t help this condition (more on this in a minute) – it will help my heart in general, and I want it to be as healthy as possible – especially given our family history.
I kept persisting about cardiac rehab. I was told we didn’t have it in our community, but he (the cardiologist) was working on getting it set up. For months and months and months. So then I asked if I could go to it in another community – there is one 50 km away. The cardiologist agreed, but said it was my family doctor who had to refer. Talk about getting a run around.
So a year plus, after diagnosed I got into a cardiac rehab program. For me, I needed to know what exercise was okay and safe for me to do, and the program really helped with that. It also had a counselling component – which I took advantage of, and my counsellor was very helpful.
As for whether or not exercise is useful for people with cardiomyopathy: through someone I know, I met, by phone, a friend of hers. This friend also has idiopathic cardiomyopathy – and she was told by her cardiologist to exercise every day or die! (She was very resistant to the idea of exercise, so I think he needed to be strongly worded). I also have an acquaintance who was found to have heart failure (which cardiomyopathy can lead to) and she was told to walk daily.
I know that no two heart conditions are the same, but honestly, odd that people with such similar conditions are told such opposite things about the need for exercise.
Anyway, thank you again, Carolyn, for such an excellent blog.
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Thanks so much Irene for sharing these stories with us. Your persistence is remarkable and inspiring! Depending on the form of cardiomyopathy diagnosis (dilated, hypertrophic, ARVD, etc), physical exercise may not only be possible, but may have a wide range of benefits, including an improvement in quality of life, reduced hospitalization, and improved survival. Visit this site for more info. Best of luck to you!
Thanks for the link, Carolyn. So nice for people in the UK that they have cardiomyopathy support groups. I am not saying that sarcastically – I do think they are lucky to have that.
As for the kind of cardiomyopathy I have – I have asked repeatedly – is it dilated, hypertrophic etc, but all I am ever told is that it is idiopathic. I kind of want to know is it idiopathic dilated etc…. Although maybe there is no such category. But it is very frustrating, because it means I cannot find out more about what to do (besides taking the darn pills).
Anyway, I will investigate this website a bit more. Thanks again, and thanks for all your work, Carolyn!
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Good luck solving that mystery, Irene. Your mission is to sleuth out all the different kinds of idiopathic cardiomyopathy and become a world expert in your particular diagnosis!
I guess I was one of the luckier ones… after several stents and then bypass surgery I had cardiac rehab after all my procedures, and this was 10-12 years ago.
It was a positive experience after dealing with all my issues to be around people who monitored activity and it made me feel safe in exercising, and gave me the confidence to then go off on my own. I didn’t realize that rehab wasn’t routinely ordered.
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You are indeed one of the lucky 20% of all eligible heart patients, Barb! I too was shocked when I started researching these physician referral stats – which seems to me like they should be a no-brainer for the average physician. Shocking and inexcusable!
Could it have anything to do with keeping expenses down..? Isn’t the MD highly pressured to keep expenses down and avoid unnecessary expenses? When you have a white male, could the bias be that this is usually an income earner with a better known outcome profile, and there is less data to extrapolate toward women and elderly? The pressures against expensive tests also lead to incorrect diagnoses that are frequently false-negatives?
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Hi Mary! My fondest hope would be that you would be all wrong about this rationale (although stranger things have indeed proved to be true!)
There is, however, no shortage of evidence-based data supporting cardiac rehab’s lifesaving outcomes for women and the elderly (as well as men, of course!) And this “failure to refer” we’re talking about here includes only those patients who are already eligible diagnosed survivors of cardiac events – which is why any failure is so particularly egregious.
You and I were on the same wavelength today! I just wrote about the same thing. Unimaginable that this exists in today’s world!!
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Amazing serendipity! Readers, please don’t miss Jodi’s excellent rant on her blog today: “Gender Inequities In Cardiac Care: You Must Advocate For Yourself”.