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?
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).