Atrial Fibrillation: The Patient Perspective to Better Care
- Volume 19 - Issue 10 - October 2011
- Posted on: 10/4/11
- 0 Comments
- 1615 reads
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?