by Carolyn Thomas ♥ @HeartSisters
Internal Medicine specialist Dr. Ann Hester’s new book is called Patient Empowerment 101 – but its subtitle is “More than a Book – It’s an Adventure!” The adventure of Chapter 1 includes this:
“While physicians and medical professionals devote many years to studying medicine, patients simply don’t have a comparable Patient School to learn how to effectively navigate the healthcare system.” .
Dr. Hester then adds her first simple lesson of Patient School: being informed and well-prepared for each medical visit “can make your healthcare team stand up and notice that they’re dealing with a well-informed patient.”
It makes sense to become an informed and prepared participant in your own health care. In my Heart-Smart Women public presentations and in my Heart Sisters blog articles, this is what I’ve been urging my audience members/readers to consider for years.
“Your only job”, as I like to remind the freshly-diagnosed, “is to become the world expert in your diagnosis!”
But many patients – including my late Mum, for example – have little interest in becoming a world expert in their own health. My mother’s health was her longtime family doctor’s job – not hers. She saw him as The Expert, the boss of her health care. Mum had as much interest in becoming informed about whatever was going on in her body as I generally have in becoming informed about what’s going on in my car engine.
Here’s why: If I hear a weird *ping* noise while driving, the truth is that I tend to ignore or dismiss it as long as possible. (Who knows – maybe it will go away tomorrow?) If I finally ask my mechanic to take a look, I’m not really that interested in hearing his detailed explanation of how he managed to figure out if my problem was battery- or alternator-related. I simply don’t care.
But what happens when that “I simply don’t care” response is applied to a person’s own health? What must it be like for physicians who spend their careers interacting with many unprepared or uninformed patients who share the same lack of interest – not in their car engine, but in their own precious health?
In a recent Intersecting Ideas podcast interview, Dr. Ann Hester describes a fairly typical day at work for her physician colleagues:
“Picture this. You get up at 5 a.m. and rush to work. Your clinic nurse has overbooked you because a lot of people are sick. You know you’ll have only about five minutes face time with each of your patients today, because after you actually see and examine each patient, you’ll have to take care of the electronic charting and documentation of every person you see.
“Meanwhile, there will be phonecalls throughout the day. The nurse tells you that more patients will be booked into your already overbooked schedule. You realize you won’t have time to eat breakfast – or lunch. Your stomach is grumbling, your blood sugar is dropping. Your spouse calls to remind you to be home early for your child’s basketball game later on. There are so many things going on all around you!
“So when your patient is taking a long time communicating why they’re here today, you’ll want to rush that patient through – not to be rude, but because you need information. The patient might not know how to communicate that information effectively. And this could be your only recourse in order to somehow get through that patient’s appointment, provide them with the care they need as best you can within the time you have, so that you move on to the next patient waiting, and the next patient after that, and so on. . . .”
Dr. Hester recalls an appointment in which she asked her patient a simple YES or NO question – which took the patient 10 minutes to answer.
But she also understands how easily this can happen. The patient may be in pain, sitting on the hard exam room table, uncomfortable, half-naked, feeling cold or overwhelmed, waiting, worrying about what the doctor might tell her – and the doctor’s question “How can I help you today?” could be the first time the patient actually begins to think through a chronological history – or even where to start.
But let’s say you have a new symptom that’s worrisome enough to seek help from your physician. Dr. Hester suggests that you begin at that moment – not at your appointment – to start thinking how you can help your doctor by clearly listing answers to these questions about your symptoms: where is the symptom? is it a new symptom? what’s the severity of the symptom? what’s the exact location/duration/quality of that symptom? are there any modifying factors (what makes the symptom worse or better?) or any other relevant context or timing to help the doctor solve this mystery?
Knowing concise answers to such questions before you enter your doctor’s office means you are identifying yourself as a well-prepared patient. Conversely, lack of preparation for a doctor’s visit could derail an entire morning for that doctor – while other patients wait in increasing frustration and discomfort.
Dr. Hester also appreciates prepared patients who come in for blood pressure follow-up, for example, bringing with them a log of the home blood pressure readings taken in the past week. Or patients coming in for diabetes follow-up who arrive with their recent blood sugar readings to show her.
The definition of patient empowerment, by the way, is: “‘a process through which people gain greater control over decisions and actions affecting their health” according to the World Health Organization.
But the word empowerment can be one of those loaded words that, as the National Institutes of Health once observed, “could be the preferred term from a patient advocacy point of view – but the less emotionally charged and challenging term ‘patient participation’ might be more acceptable to many health care professionals, patients and cultures.”
Personally, I would never describe myself out loud as an empowered patient (mostly because to me it smacks of “In your face, Doc!” ). The word stems from a knee jerk reaction to the historic medical hierarchy that powerless patients sought to address.
Whatever words you prefer, Dr. Hester’s blog on patient empowerment paints with a broad brush:
“Sometimes it feels like healthcare is moving from being a compassionate profession to a robotic system. Doctors are frustrated. Patients are frustrated. At times, this ‘new and improved’ healthcare system seems like it churns patients in and out of a revolving door.
“Meanwhile, many doctors are fed up with changes in the system. Many are paid significantly less for their services than in the past. Even worse, less of their typical day is devoted to direct patient care because of all the bureaucratic and administrative demands they face. For a variety of reasons, many doctors are leaving the field sooner than they once thought.
“Concerns over access to care, potential rationing, and even no care have many patients on the edge of their seats.”
If you can relate to these concerns, dear reader, you’re not alone. Personally, I live in a west coast city with a severe family doctor shortage. Recent local news headlines, for example, announced that over 100,00 adults here do not have a family doctor – and no doctor is currently taking on any more new patients. NONE!
My own lovely family doctor recently made a decision to work part-time due to significant family concerns around her elderly parents who had moved in with her – and this decision required cutting hundreds of patients from her practice. I was one of the fortunate ones she decided to keep on (Whew!) As a person with a number of chronic diagnoses, I’m so very grateful and happy about not being fired by my doctor – but I’m also one of those patients described as being “on the edge of my seat”, dreading the day she too might become one of those physicians “leaving the field sooner than they once thought”. And what will I do then?!
Meanwhile, Dr. Hester offers a reassuring Patient School lesson for how all of us can help ourselves long before that next medical appointment:
“You can play a proactive role. You don’t need a medical background. You may not have a personal advocate, but you can become the best advocate for your own health care. The better informed you are, the more you can help your physicians help you.”
♥
Q: If you were teaching Patient School, what lessons would you share with your class?
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NOTE FROM CAROLYN: I wrote more on communicating effectively to your healthcare team in my book, A Woman’s Guide to Living With Heart Disease (Johns Hopkins University Press), you can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
See also:
Six rules for navigating your next doctor’s appointment
Don’t worry your pretty little head over your health care decisions
When you fear being labelled a “difficult” patient
Say what? Do patients really hear what doctors tell them?
Denial? Or doctorly deference?
Heart Sisters 
Hi Carolyn, My husband goes to all my appointments with me. He has a 5-subject notebook that has any type of information about my surgery, meds, weight, and any pains or colds/flu I have had the past year.
The only problem is that he answers the questions and tells them my symptoms. It has kinda caused a problem between my doctors and him. I try and give him the talk before we go, “Now let me tell them my problem”.
He feels that he took care of me, he knows my surgery better
than anyone. I think he is just a man that thinks I don’t know my body!!! LOL
My tip is…..There is no one between your 4 week surgeon appointment and your 6 week cardiologist appointment. Go overboard with you surgeon for answers to your questions.
Thanks for a great article.
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Hello Susan! I love that tip! Never waste an appointment with an MD to ask what you can while you can! By four weeks, patients will have plenty of important questions.
I’m guessing that what you’re observing your husband do in the doctor’s office is not far off from what he tends to do in other areas of life. Some men are ‘take charge’ guys who enjoy demonstrating how much they know – even about somebody else’s experience. It might be different if he took over the answers while accompanying a small child or a person with dementia, but I’m guessing most doctors would find this behaviour annoying and patronizing when a competent adult woman is sitting right there.
Maybe you’ll have to decide together on a hand signal you’ll use next time to get him to stop talking! He may mean well, but your doctor’s questions are aimed at the patient, and that patient is YOU, not your husband.
Good luck. . . ♥
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Exactly!!!!!💝
Thank you so much for understanding what I am trying to say.
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You’re welcome, Susan! 🙂
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Hi Carolyn,
We are all so different in our illnesses, situations, and level of involvement we want. If I were teaching Patient School, my #1 lesson would probably be to remind my “students” that self-advocacy is a skill, and like all skills, you’ll get better at it.
Try not to be intimidated, keep doing your best, and keep pushing for validation, answers, or whatever it is you want.
Lesson #2 would be to journal – or write down in a notebook, on a calendar, or somewhere when a symptom, pain, question, etc. first pops up. I write that advice in blog posts a lot. Keep a record of what hurts, where it hurts, how long it hurts, what time of day it hurts most, and whatever details you can chronicle.
I find that docs love it when you come in prepared with info to back up your “story”. Saves everyone time, and they can’t brush it off as easily if you have documentation. Sad, maybe, but true.
Also, like you don’t discuss your heart disease with your kids, I rarely discuss my cancer with my kids anymore. They never ask. It’s too hard. Too scary. I get it. Pretty sure they don’t read my blog either, except for my daughter. She still does.
Thanks for another terrific post.
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Hi Nancy – such great points! I loved that you started off with something that’s rarely mentioned: “Self-advocacy is a skill, and like all skills, you’ll get better at it. . .” So true!
After I returned home from my 2008 Mayo Clinic training (WomenHeart Science & Leadership Symposium for Women with Heart Disease), I did not quite believe that the general public would ever want to leave home on a rainy night and drive across town to hear me speak about what I’d just learned at Mayo about women’s heart health.
My first “Pinot & Prevention” event (like a Tupperware party without the Tupperware!) had 21 women all scrunched together on the living room floor for a 90 minute talk!) I was shocked but thrilled by that turnout. I didn’t start my blog for another year (no articles, just mostly to direct readers to a list of upcoming heart talks (now held in auditoriums or on conference stages). By then I could pretty well tailor each talk to whatever time frame the event organizers wanted (a 10 minute version, a 30 minute version, a 90-minute version!)
My first few medical conference presentations were so stressful (one physician asked flat out: “I listen to patients all day long in my clinic – why should I have to listen to patients at my medical conferences?” Docs were tough audiences at first! I still start off with a polite disclaimer: “I’m NOT a physician. I have no medical training. I’m merely a dull-witted patient who somehow survived a misdiagnosed heart attack.” This tends to lower the level of disdainful ‘harumphing‘ right off the bat – because doctors don’t have to point out that they’re smarter than patients. And I didn’t start writing my book until Johns Hopkins University Press contacted me seven years ago about doing a book with them based on my Heart Sisters blog posts.
Every step was a surprise to me! But you’re so right when you remind us: “Try not to be intimidated, keep doing your best!”
None of those ‘skills’ was even on my radar in the early days and years. As Susannah Fox used to say: “Patients know things”. That’s all we have to know to speak up, right?
My son Ben told me he couldn’t read past the first chapter of my book because it’s too upsetting to read about what had happened to his mother in those scary moments.
Thank you for your always-right-on comments, Nancy! Take care and stay safe. . . ♥
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I love reading these ideas! Some of them I already do, but maybe a little differently.
Definitely try to use an ambulance (911 in the US) to get into the ER–it saves the wait time that you can get by walking in–although the overcrowding issues are somewhat changing.
I used to keep my list of meds/allergies/med history printed out to bring to ER & all appointments. I recently discovered that bringing all of that plus other relevant documents (vaccine card, my DNR form, some recent doctor’s documents like discharge orders) in it seems to get their attention & respect even more.
I’m also working on becoming more assertive about learning meds & their side effects, and asking questions of the docs, and sometimes accepting the risk involved in refusing to take some. That one has been hard.
I was in the hospital all last week with a really bad stomach bug and there were a few days when I couldn’t possibly swallow my meds and keep them down. I had several nurses push back, and push back hard about my only complying with taking the most crucial–the vitamins, cholesterol meds and antihistamine were just going to have to wait a few days.
It also became clear that these same people hadn’t read my chart about why I was there, they just knew that I was a renal & cardiac patient and assumed that’s why I was there, Super frustrating, but brings me to my last piece of advice is to call them out on their stuff:
Ask the question, “Have you been able to read my chart yet?”
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Hello Charlotte – I sure hope your stomach problems have settled down by now. You know you’re really sick when you can’t swallow meds. . .
I love that last question! It’s quite a reasonable question, too – given how chaotic and short-staffed some hospitals are these days. It’s entirely possible at some periods that an overwhelmed ward nurse simply does not have time to sit down and read pages of chart notes.
I admire your resolve to educate yourself on your meds and their side effects – AND your right to refuse them on occasion if you’re willing to accept the consequences of doing so.
Good point about calling 911. Not only does it shorten the patient’s wait there (I HOPE! There are many instances here of ambulances unable to offload their patients because of overbooked ERs). Another reason not to drive yourself to the hospital is that the ambulance paramedics can start you on on IV, stabilize your symptoms, call ahead to update the ER staff for your arrival.
Thanks for sharing those tips for Patient School, Charlotte!
Take care and stay safe. . . ♥
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So so true. I often take a friend or adult child because I’m taken more seriously. Also I appreciate their recall after the visit. Take my list.
Thanks for keeping on with the writing. I value your information and perspective.
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Hi Sara – thanks so much for your nice comment. I agree that taking another adult with us to medical appointments can often help us to recall details accurately afterwards.
It seems to be only women however who believe they may not be taken seriously by their doctor unless another adult is with them at appointments. And unfortunately, women are generally correct in this belief, as researchers continue to confirm. Dr. Alyson McGregor, for example, writes more on this issue in her book “Sex Matters: How Male-Centric Medicine Endangers Women’s Health”
Do men ever need to worry that their doctors won’t believe what they say?
Instead of female patients looking at “bringing another adult” as a solution to the problem of being dismissed or unheard by a doctor, I wonder why we’re not just training doctors to believe what female patients are telling them – which seems to be the real problem?
Take care, stay safe. . . ♥
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I’m disappointed in my cardiologist and other doctors too when it comes to getting even basic information regarding me and my surgery.
Although reading about the topics of my condition is helpful, they do not answer many of my specific questions. I do however recommend educating yourself. I have found the podcasts by Ninja Nerd on YouTube to be helpful. They are a bit technical but the presenter does a good job at explaining, for instance, what specific heart medications I have been instructed to take do for my cardiac system.
Give it a chance and do learn as much as you can outside of the doctor’s office. The more knowledge you gain, the better able you are to ask the good questions!
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Hello Robin – first of all, thanks for that link to Ninja Nerd videos (covering just about every possible part of the heart – and lots of other body parts!!)
The info is very thorough, although the instructor I watched – Zachary Murphy, who is studying to become a PA (Physician Assistant) – talks so fast that I needed to rewind and rewatch a few sections just to keep up (and I’m a patient who spends a lot of time translating high-jargon topics!)
His obvious enthusiasm is acknowledged in the many rave reviews in the site’s Comments section; one reader says: “The human body IS really cool, so it boggles my mind when professors drone on monotonously in lectures.” Zachary’s bio says that “he hopes to provide his future patients with a more comprehensive understanding of their symptoms and diagnoses.”
This site would be a terrific ‘study buddy’ for med/nursing/pharmacy students (and any heart patients who can keep up!) Thanks again for this new-to-me resource – I think I’ll do a post about this site.
You’re so right – the more knowledge you gain (from these videos or from other credible sources), the better your questions will be.
I’m not sure why your cardiologist and other doctors “don’t share even basic information” about your surgery. I wonder if this means that they refuse to answer your specific questions, or that they do not know the answers, or ? ? ?
I always urge my readers/audiences not to leave their doctor’s office until they understand what’s going on with their heart.
Take care, and stay safe. . . ♥
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I carry a 2 page document with all my diagnoses, my medical history, Medications and allergies. I’ve had ER residents ask if they can photocopy it – I assume to study while they enter their notes in the computer. This is especially important if I end up in a hospital that does not have records from previous visits. I belong to an HMO that has their outpatient records completely accessible to their contracted hospital. So, I head to that hospital – when I have a choice.
One thing I am thankful for is the Docs in our HMO are being given 20 to 30 mins for a patient visit. I rarely feel rushed. Many of our docs left private practice to have the “luxury” of time with patients.
I am, however, disappointed with my new cardiologist, whom I brought a detailed 30 day report of my ongoing chest pain: date, time, intensity, duration, radiation and what if anything relieved it. He decided my chest pain was random and not cardiac because it is often at rest and not with exertion. And because my stress echo showed no ischemia the answer is diet and exercise.
I guess I was spoiled by 11 years with a Cardiologist that was a compassionate listener.
I’ve thought about changing cardiologists but they are all in the same office and wonder how being “labeled” might affect my care with a new one.
Anyway, my chest pain has subsided this past week and I’ll make the decision about changing cardiologists another day.
Thanks for listening Carolyn. I appreciate you.
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Hi Jill – it’s a sad day when patients have to mourn all those years of being spoiled by a cardiologist who was “a compassionate listener” – as if that quality is freakishly rare in cardiology! And if it is rare, WHY is it so rare?
I can’t imagine what more you could have done to help your new cardiologist help you – if bringing in your 30-day report packed with lots of pertinent facts wasn’t enough to grab his attention. It’s almost as if he was responding “I don’t care what you tell me, my mind is made up!” The reality is that when cardiac diagnostic tests (like your stress echo) come back “normal”, very few if any docs will continue pursuing what they’ve swiftly decided is a dead end after all. But SOMETHING is causing your ongoing chest pain! If he’s so sure it’s non-cardiac, who did he suggest you be referred to next to solve the mystery (beyond of course the miracle cures of diet and exercise)?
I love picturing those ER residents photocopying your documents – you just made their jobs so much easier when charting. A good Patient School lesson for all of us.
20-30 minutes for a patient visit? Such luxury indeed! I understand completely why leaving one cardiologist to move to another in the same group could be tricky. They may work more independently than you think – but what if they don’t? Sigh. . .
Take care, stay safe. . . ♥
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I need to thank you Carolyn for being such a compassionate listener.
I really don’t discuss my health issues even with family. . . mostly because it frightens them to know all the “stuff” on my 2-page document and I don’t have the energy to give them support during their freak out LOL.
You offer just the right amount of validation that allows me to realize I am NOT lazy, crazy or stupid. Which is how I felt when I left my new cardiologist’s office!
It’s a good thing we still have to wear masks at the doctor’s office so he didn’t see my jaw drop, followed by my teeth clenching. I just knew it wasn’t worth the effort to try to get his attention, like you said, his mind was made up. If I remember right he had his arms folded the whole time, classic body language for closed mindedness.
I’m tired this week but have not had chest pain so Onward and Upward! Thanks again for being you. 😉
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Hello again Jill – as one of my readers says, “Men don’t have to fight to be believed!” I just don’t think that cardiologist would have responded (with arms crossed, for Pete’s sake!) if you had been a male patient in front of him. No wonder you felt “lazy, crazy and stupid”. I have doctor and nurse friends who would jump in at this point to defend crossed arms (“Hey! Maybe it’s cold in that room!”) to which I always say: “Then put a sweater on!”
Honestly, I could write a book about dismissive body language in the doctor’s office based solely on my readers’ reports over the years. One of my *favourite* docs was described by his patient as “leaning against the counter, filing his nails” – all while he was misdiagnosing her! I don’t know why that one disturbed me so much. Maybe it was the bored and disrespectful “are you still here?” posture – along with the NAIL FILING!
Unfortunately, there’s still a true hierarchy in medicine that makes patients generally reluctant to make a fuss (or change docs) lest they develop a reputation as “difficult”. Now that rep can follow you around. . .
Thanks for your kind words, Jill. I too rarely if EVER talk about my cardiac symptoms to my grown children. It’s been years, for example, since my daughter actually watched me take my nitro spray for severe angina one afternoon while we were out for a walk together. She freaked out and was ready to call 911 on the spot – and just as you say – I ended up trying to calm her down instead of just resting and waiting for the nitro to kick in! Note to self: try not to have chest pain around your kids!
Hope you’ve enjoyed this week with no chest pain!
♥
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It has taken me about 8 ER visits to figure out the best way to be a patient there. I always go by ambulance if the issue is chest pain.
Because I see a different doc /nurses/residents each time – it’s important for me to guide them with what I know. Because my heart condition is not typical, they test my Troponins and when it’s evident that I’m not having a heart attack, they send me home. My hospital file is huge, and my diagnosis is not clear.
I have prepared a small card 4×5 with the basic info: The date of my MI – (I specify it’s a MINOCA) and then list the suspected diagnoses: Kounis syndrome, Vasospastic angina and/or Microvascular disease. And my conduction disorder (LBBB).
I added allergies, next of kin, name and telephone number of cardiologist.
I also write which diagnostic tests are pending.
It has been interesting to have nurses bring the card to the desk and start researching MINOCA and Kounis syndrome on the computer. They usually pass the info to the doc and this avoids my having to go through some of the ‘maybe it’s anxiety, indigestion, etc…’ or doing unnecessary ultrasounds of my spleen or other organ).
I know a visit in Emergent care is a minimum of 5 hrs (Troponin testing at 4 hr interval) and I have a bag ready to go in case: snacks, charger, tissues, something to occupy myself, money for taxi, enough meds for 24 hrs. They won’t give you your medication until the doctor orders it, so if you wait 5-10 hrs, you might miss crucial doses.
My next tool I prepare is going to be my own pain scale…. What I mean by each number: 2/10 chest discomfort, 3/10. Pressure…5, squeezing pain, jabbing, etc.
Doing this has helped a lot and I feel I have a bit more control.
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Dima, you have learned so much throughout your many ER visits on how to help Emergency staff help you.
I love the image of nurses looking up unfamiliar diagnoses on their computers – and of course, passing on that info to the docs (very important!)
I appreciate your impressive list of what to pack for a trip to Emergency. It makes sense – so many people just grab their purse and show up with none of the things on your list – with predictably miserable results. (A phone charger? Brilliant!) That part reminded me of the recent flight delays caused by extreme weather over Christmas, when passengers complained that they were given “only two granola bars” at the airport!) We cannot sit back and continue to expect that somehow others should be supplying us with everything we need during a crisis. And a trip to Emerg is in fact a crisis!
Thanks for those very smart ‘Patient School’ tips!
Take care, stay safe. . . ♥
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