Atrial Fibrillation: The Patient Perspective to Better Care

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Mellanie True Hills, Speaker and CEO, StopAfib.org
Decatur, Texas

We’ve all heard the saying that “communication is a two-way street.” In the doctor-patient relationship, especially when the patient has been diagnosed with atrial fibrillation, we should be building multi-lane highways of communication. Here, I’d like to share perspectives from the atrial fibrillation patient community, including what patients have to live with, and to raise some questions to spur further discussion and communication between patients and their healthcare providers.

As the founder of the non-profit organization StopAfib.org, I hear from thousands and thousands of afib patients through forums, conferences and speaking engagements. Unfortunately, many afib patients tell me that their doctors don’t listen and don’t really answer their questions. For some healthcare providers, it’s obvious that all they want to do is just escape and not even have to deal with afib patients. One cardiologist even told me once that afib was the bane of her existence.

New research in the Journal of Cardiovascular Nursing reported that clinicians may minimize the impact on quality of life, and thus not provide information and support. According to the article, “Compared with coronary artery disease and heart failure, afib is not typically seen by clinicians as a complex cardiac condition that adversely affects quality of life. Therefore, clinicians may minimize the significance of afib to the patient.”1 Such lack of communication may also exist because healthcare providers don’t fully understand what living with afib is like. Afib has a number of unique characteristics that suggest it may be different to live with compared to other heart conditions.

Fortunately, a little information and empathy can go a long way. When healthcare professionals have an appreciation of what it’s like to live with afib, they can provide better treatment. That involves getting beyond the idea that simply controlling an irregular heartbeat with medication is all that needs to be done for afib patients.

No Symptoms = No Impact?

The impact of afib seems to fly under the radar of many medical professionals. When patients have minimal or no symptoms, some healthcare professionals perceive that afib doesn’t affect patients’ everyday lives and simply leave them in afib. The result is often a diminished quality of life. In fact, the typical afib patient has a worse quality of life than even those who have had heart attacks.2

Doctors don’t always understand what afib does to patients. First, afib is physically exhausting. During episodes, the heart feels like a fish flopping around in the chest. When an afib episode concludes, patients feel like a limp dishrag, and often all they can do is sleep. And the effects go beyond the individual episodes. Often during their daily lives, patients who are in afib all the time are fatigued, sometimes lightheaded, and unable to enjoy simple physical activities such as riding a bike or even walking.

On the other end of the afib symptom spectrum, patients can live for years without symptoms. Because they don’t have symptoms, getting them out of afib appears less crucial, so rate control is a common strategy. In addressing whether rate control or rhythm control is better, the 2011 ACCF/AHA/HRS Focused Updates Incorporated Into the ACC/AHA/ESC 2006 Guidelines for the Management of Patients With Atrial Fibrillation state that “AFFIRM (Atrial Fibrillation Follow-up Investigation of Rhythm Management) found no difference in mortality or stroke rate between patients assigned to one strategy or the other. The RACE (Rate Control vs. Electrical cardioversion for persistent atrial fibrillation) trial found rate control not inferior to rhythm control for prevention of death and morbidity.”3 The guidelines further state that, “One may conclude from these studies that rate control is a reasonable strategy in elderly patients with minimal symptoms related to AF.”3 The European Society of Cardiology’s Guidelines for the Management of Atrial Fibrillation 2010 state that, “If rate control offers inadequate symptomatic relief, restoration of sinus rhythm becomes a clear long-term goal.”4 Therefore, for those without symptoms, a rhythm control strategy is presumed unnecessary. The Canadian Cardiovascular Society Atrial Fibrillation Guidelines 2010 also state that a “primary goal of rate control is to improve symptoms.”5 In accordance with all of these guidelines, those who are not symptomatic, especially older patients, may be left in afib and treated with rate control.

The real question becomes whether these patients are truly “asymptomatic.” Just because patients don’t feel symptoms of afib, doesn’t mean that the condition isn’t impacting their quality of life and health. They may not even realize the impact it is having.

In making the decision to leave patients in afib and on rate control, shouldn’t we also consider the potentially dire consequences of remaining in afib? We know that the longer someone has afib, the more difficult it becomes to stop or cure. Heart failure also becomes a risk. And over time, as afib remodels the heart, the extent of fibrosis resulting from long-term remodeling correlates with strokes, according to research from the University of Utah.6

Thus, one of the biggest concerns in the afib patient community is this: Is staying in afib long term effectively a death sentence?

Rate Control Medication Catch-22

In addition to the effects of afib itself, heart rate control medications such as beta blockers may also be affecting patients’ quality of life. For example, older patients on rate control medications may not mention that they’re exhausted all the time, unable to do simple tasks such as walk up stairs or go out to get the mail. They think it is just a normal part of aging and may not realize that the beta blockers may be causing the exhaustion.

In addition to the exhaustion, afib patients who have been on beta blockers often talk about how badly they felt while on them, including forgetfulness and how the brain doesn’t seem to work properly from not getting enough oxygen. While dementia and Alzheimer’s disease have been associated with afib,7 is it possible that some of these cognitive issues could be related to being on beta blockers or other rate control medications?

Rate control medications also lead to a de-spiriting Catch-22. Doctors tell patients to exercise, yet these medications drain patients’ energy, sometimes making it nearly impossible to exercise. In addition, the decline in mental and physical states may be so gradual that those on these medications may not even realize that they could feel better.

So, instead of leaving asymptomatic patients on a regimen of energy-sapping medications, shouldn’t these patients have a chance to be in normal sinus rhythm in order to decide whether they wish to possibly find a way to stay there? 

Aggressive treatment could not only improve the quality of life, but could also diminish healthcare costs when you consider the cost of treating strokes and heart failure. Instead of leaving patients in afib until they become difficult to manage (and then giving up on them), shouldn’t afib patients be referred to electrophysiologists or cardiologists sooner to identify treatment options specific to the patients’ needs? (Yes, I know that there may not be enough specialists to go around, but hopefully productivity can be improved through newer and better technology in the office and the lab.)

Timeliness is also important. We have seen indications that patients have the best chance of being “cured,” or at least their afib burden diminished markedly, if they have a procedure within the first two or three years after onset of afib. With that window of treatment, shouldn’t healthcare professionals consider referring patients sooner to specialists for treatment? If newer medications and procedures can possibly prevent a stroke down the road, isn’t it worth at least checking into such alternatives?

While watchful waiting may be appropriate for some patients, others will benefit from more aggressive treatment. They need a solution, and they need it now. Afib greatly impacts their lives, yet the patients may be too scared or intimidated to tell their healthcare providers what afib is really doing to them.

Yes, it’s hard for you to know how truly debilitating afib is, and how downright frightening it can be. But if you ask your patients, they will tell you what it’s doing to them. Then, ask yourself if you’d treat their afib more aggressively. Based on what afib is doing to them, maybe it’s time to try something more.

A Chance to Educate: September Is Afib Month

Building that highway of afib communication includes sharing more information and creating better follow up. Afib patients often lack knowledge about the serious implications of their condition. Sometimes patients are also given unrealistic expectations and aren’t monitored closely enough.

Follow up for afib patients may need to be more often than for other heart patients, especially immediately after diagnosis while they adapt and learn to live with the condition. Since medications may have some adverse side effects, frequent monitoring is critical in these early stages. Also, patients should understand their medications, including what they are for and how to use them. Patients should also know how and when to report a problem about their medications.

These issues all boil down to two things: time and communication. Hopefully, effective communication saves time. No doctor has the time to thoroughly educate each and every patient, and that’s where StopAfib.org can help. Patients can visit our site to become more educated, which aids in communication. The mission of StopAfib.org is to raise awareness about afib and strokes.

In addition to creating the leading afib web site, StopAfib.org started Atrial Fibrillation Awareness Month, which is globally recognized every September. StopAfib.org lobbied on Capitol Hill along with other organizations such as the Heart Rhythm Society, and in 2009, the U.S. Senate passed a resolution officially recognizing September as National Atrial Fibrillation Awareness Month.8

As the founder of StopAfib.org, I hear from hundreds of patients a day as well as speak at hospital-sponsored afib events around the country where I talk to thousands of patients. After such events, patients frequently tell me “this is the first time I’ve ever really understood my afib.” Such understanding helps patients become better partners with their healthcare providers.


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