As the founder of StopAfib.org, I have heard from thousands of atrial fibrillation patients who have shared their afib experiences with me. For so many of us, the diagnosis and treatment of afib is confusing and scary.

To improve communication between patients and their health-care providers, and ultimately, provide better care, I recently shared with doctors at the Western Atrial Fibrillation Symposium some “dos” and “don’ts” that afib patients have shared with me. While these comments are from atrial fibrillation patients, they are likely to apply to all patients.

DO

Tips that medical professionals can incorporate when seeing afib patients:

• Think: What if it were me? When dealing with afib patients, keeping the physical, emotional and financial impact of the condition in mind can lead to more empathetic care.
• Adjust to patients. Especially when afib patients are initially diagnosed, they may not be up to speed with the risks posed by the condition. Health-care providers may need to slow the pace of information to ensure the messages are received. Specifically, the elderly, those with hearing loss, or those on beta blockers with “brain fog” have difficulty with speed or accents, so adjust speaking speed to the patient.
• Decrease medical jargon. Health-care providers work in the world of abbreviations and medical terminology, but patients don’t understand this jargon. Be prepared to offer explanations instead of waiting for questions, because many won’t even ask.
• Write down medical terms. Patients can gain a greater understanding of their condition and do additional research when they know the precise language used to describe their condition.
• Set realistic expectations. Describing the potential outcomes of treatments and medications allows patients to know what to expect and allows them to adjust accordingly. Be honest and don’t hide the truth. For example, some patients are not told that they might need more than one catheter ablation.
• Say “I don’t know.” If there is a topic or patient question that health-care providers don’t have all the information about, let patients know. Patients know that afib is complex and that health-care providers may not have all the answers, and that’s OK. Exploring such answers together creates a team atmosphere.
• Provide credible resources. As patients look to research their condition, point them to reputable organizations and reliable sources. Look for resources with the Health On the Net Foundation (HON code) seal, which means that the sites attribute research and are trustworthy.
• Refer patients to StopAfib.org. Through the organization’s support network, patients can learn about the condition and share their experiences.
• Request StopAfib.org patient cards. These handy cards allow patients to immediately connect to afib information.

DON’T

Here are a few phrases patients wish health-care providers wouldn’t say when talking with them:

• “Afib won’t kill you.” When first diagnosed, patients are in shock and can’t process the deluge of information. Saying “it won’t kill you” gets in the way of the real message — that blood clots and stroke can kill.
• “Just get on with your life.” Afib has hijacked the lives of those who have it, and saying that devalues the patient’s experience. It’s not something that can be ignored.
• “Stay off the Internet and only listen to me.” Patients need support from those who have been there. Be open to patients bearing printouts and web research. When patients do such research, they feel empowered.
• “I’ll choose your treatment, not you.” Instead, incorporate patients as part of the decision. Let patients feel in control, because the condition often takes that away from them. They have to live with the end results of treatment.
• “You’re just a hysterical female.” Women are open about feelings, which are often dismissed and thus they don’t get treated for afib as quickly. Remember, afib is different for women, especially related to hormonal cycles. And often women’s symptoms are dismissed as stress, lack of sleep, or panic attacks.

Adapted from: Bridging the Afib Communications Gap: Afib Patient Perspectives from the Fourth Annual Western AF Symposium, by Mellanie True Hills, EP Lab Digest, April 2011, pgs. 28–32.  PDF Reprint Available