Presentation given by Jon Costlow, CEO of CHFpatients.com, Inc., at the St. Regis Hotel Crystal Ballroom on April 17, 2006. This was a "medical roundtable" - a medical conference where everyone was expected to participate in some manner.
My thanks to Dr. Marc Silver and Dr. Sarah Goodlin for making this presentation possible. They recognize the importance of full patient particpation in the healthcare process, which makes them some of the very best anywhere.
The headings were not spoken aloud - they are to help you read the page more easily. Every presentation had a 14-minute time limit. The room was full of MDs, PhDs, and heads or subdirectors of large organizations so I had to establish why they should pay attention to me first - with that done, I moved on to the message. The material at the end was not part of the verbal presentation - it was written in front of me so I wouldn't forget what you - my readers - told me, when it came to question and answer time both after my presentation, and after other presentations. I pushed CHFpatients.com hard. Donations are not keeping clothes on my back and food on my table - if I don't find some other way to increase my income, I'm in trouble. Sorry, but that's how it is.
If I embarrass myself up here, please remember this is my first-ever public speaking appearance - my wife won't usually let me out unsupervised.
Now, being the one patient speaker at this session begs the question : Why in the world should you listen to me?
Twelve years ago I was diagnosed with class 4 heart failure, an LVEF of 13%, and a Vo2max of 13.5. Today I have an EF of 55% and Vo2max of 30. I currently have a very long list of heart-failure-related problems despite my improved EF. I now feel much worse with an EF of 55% than when it was 20 to 30%.
I also run a non-profit corporation called CHFpatients.com, Inc. We're quite official, with an attorney, an accountant, and tax-deductible donations. Talk about a labor of love - I make about 12,000 dollars a year doing this job. However, we keep our readers' trust by having no advertisers, no registration, and no fund drives. A few more donors would be nice.
Every year, over one million people view over 3 million of our web pages. I answer every e-mail personally. So, when I say I have the patient perspective, I mean it. This is not some unusually proactive patient population. Many were not on the Internet until they got heart failure. They could not get the information they needed from the medical community and they went looking it. They found it at CHFpatients.com.
I talk with thousands of heart failure patients every year. I speak with hundreds of people from the medical community as well - at all levels. Marc Silver and Patrick McCarthy are just two of those who have helped me with our web site.
So, yeah, you should listen to me. I have a broad overview of heart failure reality. I'm not talking theory, trials, or office-visit experiences - but the reality of living with heart failure all day every day.
I've run 2 surveys in 2 years to get my readers' perspectives and the response was overwhelming. There was so much that I can present only a tiny fraction of it here. You will hear me use the term "CHIFFER" today. It stands for CHFer, which means someone with CHF or congestive heart failure. It's how most of my readers refer to themselves, so I'm using it here. I know it's been shortened to HF now but hey, I own HFpatients.com as well. ..... I'm not stupid.
First, let's remember that the same person may have serious heart failure today but next week be mild to moderate. The asymmetric, cyclical nature of heart failure cannot be predicted but it certainly exists for many of us. For that reason, I talk here about managing heart failure rather than palliative care. Also, heart failure is one of those illnesses where effective palliative care often runs parallel to standard treatments.
Two issues jump in my face whenever patients talk to patients:
How doctors talk ..... and how doctors listen.
Since this is truly a patient perspective, I hope you really are listening, because here we go.
At diagnosis, the phrase "heart failure" emotionally slaughters you when you hear it. This makes it impossible for us to really hear you at that time. However, with planning, you the doctor can get our education going early on, so really work at it. The way you give us the bad news makes the road ahead much rougher or much easier for everyone. I can improve your doctor-to-patient communication if you contact me. However, you can also do this yourself.
Consider both the doctor and patient perspective here - how much does any given CHFer really want to know? And how do you the doctor know which patients want how much information?
Once in awhile you'll get a CHFer who just doesn't want to know anything. You just have to deal with that. However, almost all CHFers told me that how well they receive and use information depends entirely on how you present it to them. How fast and in what order? How much is plain English and how much is Medspeak? Is it a dialogue or do you give a speech? Do you hand them off to a nurse or do you take the time to lead them through their misconceptions and uncertainties yourself? How many hard-copy handouts do you give? Are they written for intelligent adults or for mindless idiots?
Don't forget that sometimes a spouse or adult child at exams may want a lot more information than the patient wants. Give it freely. They can help the patient down the road. Never ever forget the impact you've caused with those 2 little words - "heart failure."
Basic truth - How much information a patient wants depends largely on how well you present that information to him. That's why the number one recommendation from CHFers is that you send your heart failure patients to CHFpatients.com for their information.
CHFers' number 2 recommendation was that you hire me to give seminars for you on how to talk with them. Actually, that's kind of embarrassing since we haven't officially offered that service yet but we're open to the idea if you're interested.
Hard copies of our web pages do not convey what we offer but I am supplying folders that contain excerpts from a variety of our web pages, along with cards both for doctors and patients. If you're serious, look us up online or call us. You will immediately see that we are not some little, touchy-feely operation. We offer huge amounts of strong information in formats patients understand and actively use.
The next issue CHFers always bring up is the 800-pound gorilla in the room every single day : ARE YOU REALLY LISTENING?
We aren't just an illness, you know - we're not a patient, we're not a file. We're people. I'm father to a Presidential scholar who is now an accountant and a published poet; I am husband to a wife who is an accomplished musician. I switched careers in mid-life and made it work. My life matters. Don't ever blow me off ..... and don't ever tune me out.
I may ascribe symptom A to cause B. Hey, they may be completely unrelated. That does not make symptom A any less real ..... or any less deserving of your attention. That does not make symptom A non-heart-related. I've lived in this body a long time, and I know when it's not right. Trust that!
I'm not a doctor - you have the medical degree. It's up to you to find out what's not right, but believe us when we tell you something is off. I can give examples from my own personal medical history if you ask.
Not listening to your patients also keeps you behind the information curve! Way back in 1998, I was telling doctors that Coreg-driven EF improvements did not correlate with functional class improvements in many patients. A year later, in 1999, I was screaming that beta-blockers were causing increased body fat in CHFers.
Almost every cardiologist blew me off. Today these are considered facts. LISTEN to your patients - there is a pay-off to you as well as to us.
One last note on listening - We need to talk to our doctor on shorter notice without running the gauntlet of staff first, even if we pay extra for it. Whether it's e-mail with a cost per message or simply streamlining your chain of command, please let us talk to our heart failure doctor! We need it, we deserve it, and we expect it. ALL my readers say they are willing to pay extra out of pocket for this if it works for them.
The day is coming when patients who cannot talk to their doctor in a timely fashion will move to another doctor. Communication is how chronic illness is managed and that's a basic fact we all must learn.
Now for the final reader suggestion that I have time to present - Be specific. That's it. Be specific. If you don't know how to give specifics on a topic, find someone who does. Just make sure they really do know heart failure. Your standard dietician or cardiac rehab nurse does NOT understand what we need.
To begin with, don't just say, "Exercise." Don't send us to cardiac rehab and assume that now we know how to exercise. CHFers require a combination exercise program that no one seems to be giving us. Flexibility, balance, strength and endurance all need work in our screwed-up bodies.
Recommending endurance training means telling us whether to use a treadmill, swimming, bicycle, what? How fast do we start? How do we know when to increase speed or time? How do we know if we are overdoing it? Do we exercise on bad days? How do we utilize heart rate when taking beta-blockers? Be specific.
Recommending resistance training means telling a patient whether to use machines, weights, rubber bands, what? Which exercises, how many sets, how many repetitions, how long do we rest between sets, which exercises on the same day, how many times a week? Be specific.
CHFpatients.com's web site offers detailed descriptions of all this and it works. If you don't think so, work out with me sometime.
How important is exercise? My wife and I decided that if my energy level drops to where it is either run the company or exercise but not both, I will drop the company and choose exercise. Think about it.
Like exercise, consider diet. Low-fat can come later for those who need it but the low-sodium diet is needed now. Again, we need specifics. Vague phrases like, "Read labels" or "Don't use the salt shaker" are meaningless. We need actual recipes and they must taste like real food. We need cooking tips, no-salt food sources, and more. Like exercise, just saying, "Eat low sodium" is useless. Dieticians are not much help in this area to date.
Our web site has over 100 low sodium recipes with links to more and links to good low-sodium food sources. This includes mail-order sources run by CHFers for those who can't easily get out to shop. We also have recipes that are both low-sodium and low-carb for diabetics with heart failure.
End-stage or severe CHFers deserve one large vote here : Why won't you tell us how we are likely to die from heart failure? Is drowning too unpleasant to discuss? Because sudden death is impossible to predict? What is it?
IF WE ASK, you are obligated to answer with the most possible ways we may die. You have no idea how many CHFers come to me saying their doctors are fudging the answer on this one and they just need to know.
I tell them the range of possibilities and so far, every single person has been grateful, not upset. They just need to know, we need to know - IF WE ASK. Hey, if a patient doesn't ask, you're not obligated to say a thing, but listen so that you notice when he does ask.
Thank you for your time. Please feel free to ask me for my cell phone number so you can contact me at your convenience.
Brief description of related heart failure symptoms post-EF-improvement
Brief description of examples where my symptoms were real
Other issues for possible discussion
That's how it went, folks.
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 2006 Jon C.