Heart Failure Death Statistics: Don’t believe what you read on the internet

In its website section on heart failure facts, the Heart Failure Society of America directly faces the question all people with heart failure and their loved ones desperately want to know:

“Q: What is the prognosis for a patient with heart failure?

A: Less than 50 percent of patients are living five years after their initial diagnosis and less than 25 percent are alive at 10 years. Poor prognosis can be attributed to a limited understanding of how the heart weakens and insufficient private and government funding.”  

I was startled to see those grim statistics on the HFSA website, given that clinical studies published in peer-reviewed journals have shown that ACE inhibitors and beta-blockers prolong the lives of people with heart failure and in the last decade those medicines have become standard recommended therapy.  Implanted defibrillators known as ICDs that prevent sudden death by shocking the heart when the heart goes into a chaotic rhythm, cardiac resynchronization therapy (CRT) which corrects abnormal beating of the left ventricle, and other effective treatments have also grown in use in the last decade.  

I also felt uneasy reading the HFSA answer that tied “poor prognosis” to “insufficient private and government funding.”  That seemed to have a political tinge to it, out of place in an answer directed to worried patients and family members about how long someone can live with a diagnosis of heart failure.  Many conditions can cause heart failure in which the heart is not pumping out enough blood to meet the needs of the body. 

When a patient with heart failure has a poor prognosis, there can be any number of reasons, including these:  the doctor did not order the most effective medications that could have prevented progression of the heart failure, the patient didn’t faithfully take the correctly prescribed medications either because she couldn’t afford them or was not reliable, the patient didn’t observe a low-sodium, low-fat diet and get regular exercise, and, frequently, the patient has other significant health problems. 

Also, despite excellent care, a patient may have a heart too damaged from a heart attack or from a genetic malfunction to be able to successfully pull out of heart failure.  But I doubt any doctor ever tells a patient’s family, “Your husband and father is in late-stage heart failure and has only a few months to live because the government didn’t fund enough grant money for heart failure research.”

Working on the assumption that a journalist or a person with heart failure or, for that matter, any member of the public could ask what HFSA’s source is for its grim prognosis and get an answer, I contacted HFSA.  I sent an e-mail to Cheryl Yano, HFSA longtime executive director, explaining that I was writing this blog report on heart failure death statistics, and then a second e-mail, but did not get a reply, so I called.  She would not talk to me. 

Loreen Anderza, HFSA administrative assistant who answered the phone, said there is no specific source for the HFSA statement on how long people with heart failure can expect to live.  It is “a consensus of experts in the field.  They have no source for it,” she said, after putting me on hold to speak to Cheryl Yano.  I asked if Ms.

Yano would talk to me about whether or not heart failure is becoming more of a chronic condition that can, for most people be managed, and Ms. Anderza said that Ms. Yano is not the right person to talk to because she is not an MD.  I asked who at HFSA I could talk to and she said Ms. Yano had no one to recommend.  Ms. Anderza said that everyone uses the same numbers and suggested that I ask the American Heart Association if they know what the source is for the scary prognosis that is on the HFSA website.

Instead, I contacted the president of HFSA, Barrie M. Massie MD, Chief of the Cardiology Division at the San Francisco Veterans Affairs Medical Center who responded in an e-mail:

“This is out of date.  It is based on Framingham data and several trials largely dating back 10-20 years.” 

The Framingham Heart Study

The Framingham Heart Study supported by the National Heart Lung and Blood Institute, part of the National Institutes of Health, is an ongoing project begun in 1948 that has enrolled over 14,000 members of three generations and periodically issues reports about the risk factors for developing heart disease.  The study here has provided many important findings including the risk of cigarette smoking, cholesterol, high blood pressure, and much more.  But the study is set up to find information on all forms of heart disease and its ability to track heart failure patients is quite limited. 

Original Framingham participants are seen at a clinical visit every two years and their offspring are seen every four years. “Participants with heart failure often undergo treatment between a clinic visit and before death and these interventions are not captured in our clinic visits,” said Daniel Levy MD, director of the Framingham Heart Study. Therefore his report did not have information on what treatments heart failure patients who died were using.

Many sites on the internet including HFSA that offer a prognosis for heart failure base their projections on a Framingham study published in 2002 in the New England Journal of Medicine that used data going back 15 to 20 years ago.  Even the American Heart Association’s Heart Disease and Stroke Statistics 2010 Update quotes the Framingham death rates for heart failure. 

I examined the Framingham report on heart failure and found that the prognosis the study gives is based on a very small number of deaths — 86 deaths of men and 80 deaths of women.  This study occurred before the modern therapy of ACE inhibitors and beta-blockers which are proven to prolong life in heart failure.

The Framingham study followed 323 people (145 men and 178 women) who developed heart failure between 1990 and 1999.  Dead in five years were 59% ( 86) of the men and 45% (80) women.  The study did not learn whether these men and women died of their heart failure or of some other cause, said Dr. Levy, lead author of the report that appeared October 31, 2002, in the New England Journal of Medicine.            

The Framingham study on heart failure deaths also looked at deaths in  decades going back to the 1950s and said that “Overall, there was an improvement in the survival rate after the onset of heart failure of 12 percent per decade.” 

In the decade since the Framingham study of the 1990s, “there is optimistic evidence that we have improved treatment for people with heart failure,” Dr. Levy said in a telephone interview, though he would not estimate by how much.

Other Clues to Heart Failure Prognosis

I talked to eight nationally known cardiologists in preparing this article, to get a sense of where heart failure stands as a treatable condition vs a progressively fatal condition.  Not all are quoted.  One cardiologist who asked not to be identified because he knew what he was saying was “controversial” commented on the annual AHA Heart Disease and Stroke Statistics Update:  “These are not really current data.  They are estimates extrapolated from NHANES (National Health and Nutrition Examination Survey) … with changes based on changing size and age of the population. 

Hence, they are unlikely to be accurate and will not reflect real or measured changes.  Consider them propaganda for those that thrive on high event rates. These data are useful for those seeking investment in development programs for heart failure treatment.”  NHANES, a part of the Centers for Disease Control (CDC) surveys about 5,000 people in the United States a year and estimates results for the national population. The AHA Heart Disease and Stroke Statistics 2010 Update here bases its estimated incidence of heart failure and prognosis of life expectancy largely on NHANES and the Framingham Heart Study of the 1990s.

One clue to how long people with heart failure live comes from clinical studies that try to prove a new drug or device is better than standard care at prolonging lives.  Both Dr. Massie and Alice Macette MD, chief of the National Heart Lung and Blood Institute’s Heart Failure and Arrhythmias Branch, point to the improving life expectancy for people in the placebo group of these trials — those who are on the existing standard therapy against which the new treatment is being tested.  

“For instance in the SOLVD study of 1991 which first showed the benefit of ACE-inhibitor drugs,  the three-year survival rate was about 65% in the group receiving placebo, whereas three-year survival rates were approximately 80% (or greater) in two studies (one on eplerenone and one on use of CRT for mild to moderate heart failure)reported this week at the American Heart Association here and here dealing with heart failure patients of varying degrees of severity,” said Dr. Macette.  In fact, the improvement of heart failure outcomes has helped set the bar higher for any new therapy being tested,” she said.

Dr. Massie agreed.  “If you compare the placebo groups over time there is a substantial decline in the placebo group mortalities,” he said.  “Used to be up to 20% per year and now is close to 8% per year.  This low (death) event rate has made the conduct of clinical trials hugely expensive, which is why there are far fewer of these and even fewer positive ones.”

I also asked cardiologists to judge from their own experience how treatable heart failure has become.  Edward K. Kasper MD, director of clinical cardiology at Johns Hopkins Hospital and a specialist in heart failure, (disclosure:  I co-authored Living Well with Heart Failure, the Misnamed, Misunderstood Condition with him) said “I expect most to improve with modern therapy for at least some period of time – say 75%.”

“Indeed there have been great advances and people do live longer, but progress has been slow and we need to do better,” said Dr. Massie.

I asked Mariell Jessup MD, chair of the American College of Cardiology/American Heart Association Guidelines for the Diagnosis and Management of Heart Failure in Adults found here if heart failure has become more of a chronic condition:  

Question:  “From your own patient experience, do you find that most people diagnosed with heart failure will be able to manage their condition, keeping it from advancing, or even improve with the right treatments?”

“I agree,” she replied. She pointed to a study of 2,029  people taken from the general population in Olmsted County, Minnesota.  Study participants were classified according to how sick they were.  Since this was a random sample, it included healthy people called stage 0.  Stage A had risk factors for heart failure, stage B showed cardiac structural or functional abnormalities found by testing but were not experiencing symptoms, stage C had symptoms of heart failure, and stage D had end-stage heart failure.  Survival at 5 years was 99% in stage 0, 97% in stage A, 96% in stage B, 75% in stage C, and dropped to 20% in stage D, by far the smallest group with only 5 people. The study published March 12, 2007 online in Circulation can be found here.  “It is only those patients who present with intractable symptoms that do poorly,” Dr. Jessup said.

Needed:  A Huge National Prospective Study or a National Registry

The Minnesota study, though still small numbers, gives some window into a more accurate prognosis for heart failure.

But the only way doctors and patients and their families will get a really accurate handle on prognosis with current therapies is if a huge prospective study is undertaken or at least a national registry that includes tens of thousands of patients seen at many academic centers and those seen in the community by both cardiologists and general practitioners. The study or registry should include a variety of races and ethnic backgrounds, male and female.  Much could be learned by such a study, including this information:

  • modern survival rates and deaths due to heart failure and not some other cause
  • percent of people with heart failure who die suddenly from ventricular fibrillation
  • possible geographic differences in death rates
  • treatments patients were on up to and at the time of death
  • a library of data on the genetics of heart failure

Such a study or registry should have no funding from pharmaceutical companies.

Just before publishing this article, I checked the website of the Heart Failure Society of America.  The unnecessarily scary prognosis for heart failure is still there with not even an asterisk explaining how old and outdated the data are on which it is based.

Heart Sense Helpathon: Fifth in a Series

In earlier posts in this blog we have discussed stretching exercises, aerobic exercises such as walking, biking, running, and balance exercises.  A fourth type of exercise that many people diagnosed with heart failure as well as those in good health can do safely is resistance exercises which build muscle endurance by challenging targeted muscles through a certain number of repetitions.  

But be sure to avoid straining. 

You are not the candidate to crouch and stand while hoisting heavy barbells over your head.  Before you start, look at these tables of contraindications established by the American Heart Association Science Advisory Committee which are at the end of this blog post.  I suggest you take them to your cardiologist and also show them to the rehabilitation specialist or trainer who will devise your exercise routine. The full article is in the medical journal Circulation here.

Usually, you will start with one set of repetitions, then in future sessions go to two sets with a brief rest in between the two sets.  Some examples of resistance exercises:

  • knee extensions and hamstring curls done with weights strapped to your ankles
  • knee extensions and hamstring curls done sitting on a machine such as a home gym
  • lifting your hips up off a training table or a mat on the floor while squeezing a ball between your knees and again with a ball under your legs
  • lying down on a training table or mat and opening and closing your knees with an elastic theraband around your thighs for resistance
  • Rotating the trunk of your body and doing rowing exercises with resistance bands 
  • Squats and lunges are practical exercises that help prepare your body to get out of a chair or up off the floor.

If you use a machine such as a leg press, as I do, the resistance comes from the weights stacked on the leg press as, sitting down or lying on your back, you push a heavy bar down with your feet, until your knees are almost straightened out, and then bring your knees back up.  The amount of resistance is easy to control because you can add weights to the machine or take them off, making the pushing exercise more difficult or easier.  Typically you don’t have to physically lift weights onto the machine and take them back off.  The machine is made with a column of weights and you simply insert a metal pin into the weight level that is correct for you.

To determine the appropriate weight you should use in doing an exercise, the American Heart Association Science Advisory Committee says to first find out the maximum amount of weight you can push when doing that exercise.  Then take only a percentage of that maximum.  Starting out, that would be 30 percent to 40 percent for the upper body and 50 percent to 60 percent for the hips and legs.  “Most studies of previously sedentary adults with and without heart disease, including those with heart failure, reported training workloads of 50 percent to 80 percent” of maximum weight the person could tolerate, the advisory committee reported. 

If you or your trainer or therapist have any doubts about your ability to test your maximum weight-bearing strength for an exercise, don’t do a test.  Just approximate your maximum based on what weight you comfortably handle, the committee advises. 

“For most people, if they can lift a weight 12 to 15 times before having to stop, that weight corresponds to about 50 percent of their maximum capacity,” says  Kerry J. Stewart Ed.D., director of clinical and research exercise physiology, Johns Hopkins University School of Medicine.  Dr. Stewart works with heart patients and is co-author of the guidelines for resistance training adopted in 2007 by the American Heart Association. 

It is very important for people with heart problems to use the correct breathing pattern while doing resistance exercises. To avoid putting strain on your heart, exhale on the part of the exercise that takes exertion and inhales on the part that does not as you return to your normal position.

Heart Sense Helpathon
Woman Making Heart Shape with Hands

Times to Exhale

  • when you push the leg press down with your feet
  • when you push up from a squat
  • as you do an ab crunch
  • as you move your legs up in a leg curl
  • as you curl your arm upward in a bicep curl

By using this breathing pattern, instructs my trainer Randy Rocha, who is a certified athletic trainer and strength and conditioning coach,  you don’t build pressure.  He explains:  “That’s one of the biggest concerns with people with heart trouble — that they’ll get on a machine and they’ll try to do a certain amount of weight and they’ll hold their breath and everything builds up inside, their blood pressure increases and that’s where they get into a lot of trouble and that’s why people with heart conditions may think that exercise is bad.”

Breathing correctly while doing strength training is not automatic with me.  I have to think about my breathing and remember when to exhale and when to inhale.  As I began doing resistance exercises, Randy continually prompted me to exhale when exerting myself, even though I was not aware of holding my breath.

Never hold your breath deliberately when straining.  But it may happen briefly.  “Some breath-holding is unavoidable,” Dr. Stewart says, “but try to avoid extended holding and strain.  Too much strain can raise the blood pressure to very high levels which put unnecessary strain on the heart.” 

I hope you find you are healthy enough to engage in resistance exercises to build your strength and endurance.  I enjoy this strength training.  Please be sure to get your individual program structured at a heart rehabilitation center or by a certified trainer.

Recommendations for the Initial Prescription of Resistance Training

Resistance training should be performed 

  • in a rhythmical manner at a moderate-to-slow controlled speed, 
  • through a full range of motion, avoiding breath holding and straining (Valsalva maneuver) by exhaling during the contraction or exertion phase of the lift and inhaling during the relaxation phase, and 
  • alternating between upper and lower body work, to allow for adequate rest between exercises. 

The initial resistance or weight load should 

  • allow for, and be limited, to 8 to12 repetitions/set for healthy sedentary adults, or 10 to 15 repetitions at a low level of resistance, for example, <40% of 1 repetition maximum, for older (>50-60 years of age), more frail persons, or cardiac patients 
  • be limited to a single set, performed 2 days per week, and
  • involve the major muscle groups of the upper and lower extremities, eg, chest press, shoulder press, triceps extension, biceps curl, pull-down (upper back), lower back extension, abdominal crunch/curl-up, quadriceps extension or leg press, leg curls (hamstrings), and calf raise.

[Source:  American Heart Association Science Advisory, Resistance Exercise in Individuals With and Without Cardiovascular Disease:  2007 Update] 

Absolute and Relative Contraindications to Resistance Training 

Absolute Contraindications:

If you have any of these conditions, do not do resistance exercises:

  • Unstable (Active) coronary heart disease. This means you are having symptoms of chest pain or shortness of breath even though you are on treatment.
  • Decompensated heart failure. You are having symptoms of heart failure such as shortness of breath, fatigue, and fluid retention even though you are being treated for heart failure. 
  • Uncontrolled arrhythmias
  • Severe pulmonary hypertension (mean pulmonary arterial pressure >55 mmHg) 
  • Severe and symptomatic aortic stenosis
  • Acute myocarditis, endocarditis or pericarditis
  • Uncontrolled high blood pressure (>180/110 mmHg). If your blood pressure is this high or higher, do not do resistance exercise until you get more treatment and your blood pressure falls below 160/100.  
  • Aortic dissection
  • Marfan syndrome
  • Avoid high-intensity resistance training (80 to 100% of 1-RM (one repetition maximum) if you have active proliferative retinopathy or moderate or worse nonproliferative diabetic retinopathy. 

Relative Contraindications:

If you have any of these conditions, consult a doctor before participating in resistance exercise:

  • Major risk factors for coronary heart disease (diabetes, smoking, high blood pressure, high cholesterol)   
  • Diabetes at any age. If diabetes is controlled, resistance exercise is okay and even recommended by the American Diabetes Association.  
  • Uncontrolled high blood pressure (>160/>100 mmHg). You can exercise if your blood pressure is below this level, even while taking medications to control blood pressure.
  • Low functional capacity (<4 METs). Mets are a measurement of exercise capacity
  • Musculoskeletal limitations – If the problem is so severe that it severely limits walking.
  • Implanted pacemaker or defibrillator