August 16, 2017

Doctor Dos and Don’ts in Communicating with Afib Patients

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

 

 

Comments

  1. Brandie Hicinbothom says:

    Today my father was diagnosed with a fib and im just trying to learn about it ive looked at risks online but you cant believe everything you read im reaching out to the community so that I can learn more about it and what I can do to keep my father happy and healthy as long as possible im his youngest child and I seem to be the most concerned and I believe that my concerns are valid but I also believe they are anxiety of the fact the doctor told my dad don’t worry mr.hicinbothom even those this wont kill you right now we should change your lifestyle so that you can live longer. my few questions are did anyone experience vomiting bio? That is what sent my dad into the hospital and that’s when they diagnosed the afib. And how long did it take for diagnoses my father has been in an out of the e.r. everytime they have mentioned afib and now after four years they have sent him to a dr that specializes in afib who told him he should have been on medication before now? is Afib hard to diagnose is that why they didn’t do anything about it until now? im confused can someone please help me to understand what is going?

  2. Has anyone had the problem of newly prescribed a fib drugs interacting badly with kidney transplant anti-rejection drugs?

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  4. Michael Ethridge says:

    I have recently started having episodes of -Fib. The more I read in chat rooms like this, the more nervous I become that doom is just waiting for me around the corner. I am wondering if there are at least some positive outcomes like:

    “Well my episodes just went away”
    OR
    “I started xx drug and have never had a problem since.
    OR
    I started working out and cutting out the triggers and things returned to normal.

    I’m just wondering if the folks in the middle of the crisis are the only ones posting??

    Thanks for comments.
    Michael

    • Michael,

      I wish I could tell you that lots of folks have their afib just go away, but I don’t know of many, other than those whose afib resulted from surgery.

      Doctors often tell us that once you have afib, it’s always there. And that “afib begets afib” – the more you have, the more you will have, because it remodels the heart.

      What you can do is lessen the burden. Those whose afib results from sleep apnea can lessen it by treating their apnea. Some have fewer episodes when they get their minerals balanced properly, especially the most important ones, magnesium and potassium. Others do better by staying hydrated, and still others by making diet changes.

      Some research has found that having a procedure within the first 2-3 years can increase the changes of afib staying away, especially for those who have intermittent afib (called paroxysmal, where it comes and goes).

      The most important thing you can do is to do a lot of research and talk with others. You might want to join our discussion forum:
      http://forum.stopafib.org (Instructions for registering & getting started are here: http://forum.stopafib.org/index.php?showforum=25)

      Hope to see you there.

      Mellanie

  5. Diagonosed with a-fib two months ago. I am on 6.25 mg. Metoprolol in the evening and 50 mg Flecainide in am/pm and 325 mg. aspirin in the morning. So far this has worked for me. I have no other health problems and my nuclear stress test was normal. My cardiologist has released me to normal activities. I am female, 5’7″ and 139 lbs. and active at age 63. He doesn’t think I need an ablation unless my condition worsens. I am also 1-1/2 years into menopause. I will see how this works for me.

  6. My sister was diagnosed with A-fib last year after having her aortic valve and aortic aneurysm repaired. Her first cardiologist was okay and understanding but was transferred to another hospital out in the suburbs. The cardiologist she picked to replace him had great credentials but found out has the worst bedside manner ever. As soon as she comes in the office, she tells my sister her A-fib is going to kill her unless she starts taking this new medicine that’ just came on the market (over $200/month) and coumadin. She told her that she can’t take those medicines because 1) she has had bad reactions with those types of drugs (severe edema, etc.) but the doctor keeps poo-pooing her saying I don’t believe it even though my sister was admitted to the ER last year because of the edema, and 2) she can’t afford the medicines. She has a part-time job and bad insurance. Instead of being understanding, she keeps saying “You’re going to die unless you take this medicine”. Basically, she doesn’t listen to a word my sister says and keeps scaring her. If she decides to have an ablation, the doctor said “You have to make a promise TO ME that you will take the drugs I TELL YOU TO TAKE. ” Sorry. Had to vent. My sister’s been through so much since last year.

    • Ann,

      It sounds like it’s time for your sister to find a different doctor, one that will work with her.

      There are lots of options for medications – I’m sure something can be figured out. While she may have had bad experiences with some drugs, there are many more available.

      If she cannot afford medications, there are options. Most manufacturers have prescription programs (there’s a link to the Partnership for Prescription Assistance, on our resources page at ttp://www.stopafib.org/resources.cfm). In addition, manufacturers for the newer medications usually offer discount cards or vouchers available through doctors to provide them at low cost for the first year.

      The doctor is probably referring to the risk of stroke, which is a real risk. But generic warfarin is cheap ($4-$5/month), and certainly within the range of most folks. It’s much less than the cost of dealing with a stroke.

      You may want to take some time to learn about and figure out what her stroke risk is – you’ll find a description of the scoring tools that doctors use here:
      New Stroke Risk Factors for Those with Atrial Fibrillation (AF): Female Gender, Heart Disease, and Age:
      http://www.stopafib.org/newsitem.cfm/NEWSID/220

      Good luck.

      Mellanie

  7. After my own experience with a less than fabulous bed side manner cardiologist and reading the experiences here, I am in complete confusion as to why these docs specialize in Afib. If they aren’t going to be caring and compassionate and “first do no harm” then get the heck out of the business.

    I will say “it won’t kill you” did help me ~ my biggest fear was of dying right there and then. I do understand the stroke risk, but I thought I was having a heart attack right there and then. And with my mother dying of a heart attack at 66, and me being 54, this really helped me to gain more perspective.

    And too, the synergy between Afib and menopause HAS to be honored. Treating me like one of the “cattle” , oh and then there was a medication error THAT I CAUGHT, will make me fire a doctor quickly!

    Thanks for letting me vent.

    Connie

    • Connie,

      Saying “it won’t kill you” in the emergency room, when you’re concerned you’re having a heart attack, is a very different thing from saying it in the doctor’s office and causing folks to totally miss the message about stroke. It’s the latter message that I was referring to. ER is totally different.

      Mellanie

  8. Hi Melanie

    I’m a 70 yr old female and live in Australia. I’m still working full time and when diagnosed with AF some years ago I was told, “don’t worry, it wont kill you but it will come back” end of story. I experience chest pain, breathlessness, dizziness, nausea and fatigue. I’m on Flecainide which I hate and which doesn’t do anything for me, but I refuse to take a higher dose as I’ve read all the negative stuff about it.

    From one episode a year to two, then every six months, and now, one every week or so, I’d like to say, no it hasn’t killed me, but it’s made my life a total misery.
    But hey, try telling my specialist that.

    He is very dismissive when I go and see him, but in a very nice way. I have periods when my heart beats so fast I can’t count them, and so slow I feel as if I am going to pass out. He’ says “I’ve told you it wont kill you”

    I wonder do the majority of doctors understand what it is like to live with this complaint.

    A couple of weeks ago while in AF I was hanging out my washing and experience a funny episode which I thought at the time may have been a stroke. When I called my specialist the next day, on the advice of my GP, he was obviously annoyed and said,”Got nothing to do with AF,nothing’. Very comforting.

    It is the real fear of dying hanging over your head day in day out and being totally aware of every single movement inside your body, waiting for the next attack that is hard to live with. I’ve often thought it is the only illness that makes you sometimes wish you could die because you are so afraid of dying.

    I wouldn’t wish this complaint on anyone, but I do wish Doctors would stop being Doctors and start being our partners in healing. Listen to us, we know our bodies. Don’t poo poo our experiences. We know eating fast can start an attack, we know if we don’t drink enough or drink too much, it can start an attack, we know laying on our left side, or bending over, or just getting angry can start one up. And I know if I laugh to hearty or too loud look out, I’m likely to start one off. And by the way, structurally my heart is sound and I have normal arteries.

    Sometimes I think we need to go back to the beginning, as there is a lot more to this complaint than we think.

    Thanks for your site, it gives me a lot of strength when I’m having an episode(in one now:)) Keep it happening!

    • Joy,

      Thanks for your kind words.

      Most doctors don’t understand what it’s like to live with afib. Only those who have had afib really get it.

      I agree completely – they need to be partners in our healing and to listen to us and not dismiss what we’re experiencing.

      Thanks for sharing your thoughts. Good luck.

      Mellanie

  9. George says:

    I have had varying degrees of afib for the past 15 years. In the beginning it seemed to subside with a little sleep. I was told “It Won’t Kill You.”I’ve had numerous cardio-versions and a catheter ablation but I still have afib. I’m currently on Sotalol and probably will be for as long as I live. No one seems to appreciate the seriousness or the concern that I carry around with me 24/7.
    My cardiophysiologist would like to perform a second ablation but gives no guarantees nor should he.
    I would like to hear from someone who has had more than one ablation and the results they have experienced..

  10. Tony Hulse says:

    Melanie – Thanks for the great info. When one enters into this world, it is all a little strange. It helps to know we are not alone.

    I have been in AFib for a lilttle less than a year and am being treated with rate control and anti-coagulant medication. I am a professional pilot and have been able to obtain medical certification from the FAA.

    My problem is that I am also an avid runner. Since entering into AFib, I find myself getting tired on runs of ten miles or so and taking more walking breaks than usual. My cardiologist has suggested cardioversion.

    I am stymied, however, when it comes to getting an opinion from any medical professional concerning treatment. I am told that I have to make that decision. Of course I must make the decision, but I hate to make decisions in a vacuum. A simple reading of the plusses and minuses to a procedure, or statement that “…I think that…” or “.. I prefer…” would be helpful.

    I would add sharing opinion and providing sources for additional research to the list of “DOs” for medical professionals.

    Tony

    PS: I would welcome any suggestions from the rest of the AFib community.

  11. Cathy Sylvia says:

    Mellanie – This is great advice. I have to tell you about what the cardiologist said to me when I was first diagnosed with lone paroxysmal a. fib. nine years ago. Two things have not left me: “Well, you know what they say: once in a. fib., always in a. fib.!” and regarding stroke risk on the table during catheter ablations: “Look what happens to a steak when you throw it on the grill: the blood balls up and coagulates.”

    You do NOT say that to a newly-diagnosed, panicky patient!! He scared me away from having an ablation back then, and it’s taken me nine years to get over my fear of stroke on the table. Monday (May 2nd), in desperation, I’m having my first PVI ablation. My episodes have become more frequent and intense over the years. Who knows, maybe back then if I’d had an ablation, it would’ve been a simple procedure and cured me without complications. Now, I have to have the most complex procedure, and may need more than one. (I tried a mini-Maze in 2004, which was unsuccessful. The surgeon called me four years later and said the equipment he used had been “recalled”. ??) Maybe you could add the two quotes above to your list of “Don’ts” for doctors. Thanx SO MUCH for your dedication to us AF sufferers. Your middle name “True” is so appropriate!!! Cathy

    • Cathy,

      Those comments are so awful, and so disrespectful of you as as patient. I can see how it would be so hard to get over them.

      I hope your PVI ablation went well. Please let us know.

      Thanks for your kind words and support.

      Mellanie

  12. It would seem, my doctor uses all of the Dont’s and disregards all the Do’s!

    Unfortunately without health insurance, I don’t have much choice in the matter.

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