Unlike the professionals I know in the field of cardiology (the ones who decided they really wanted to spend many, many years of their lives studying All Things Cardiac), people living with heart disease are thrust unwillingly into an intensive overnight learning immersion program. We go from being utterly ignorant to, little by little, becoming increasingly familiar with even the most complex information on the subject of our own diagnosis. As one of my Heart Sisters readers told me she had astutely reminded her physician: “This is your career, but it’s my life.”
And this seems to be true no matter what the diagnosis. I know that, had I been diagnosed with lupus instead of heart disease, I’d be blogging and speaking and writing about lupus right now.
When I attended the WomenHeart Science & Leadership Symposium for Women With Heart Disease in 2008, it was an indescribably moving experience for me to spend five days of this training at Mayo Clinic with 45 other women who chatted easily about their ejection fractions or troponins, CABG or SCAD, V-Tach or AFib.(1) Until then, I’d never met another person like me (a female survivor of the widowmaker heart attack, along with a subsequent diagnosis of inoperable coronary microvascular disease). I’d been the only woman in my cardiac rehabilitation classes, and the youngest by at least two decades. At that time, nobody I knew personally was living with what I had.
My Mayo heart sisters and I weren’t experts on our diagnoses (not yet, anyway), and indeed we had to go through several distinct learning stages that were launched only after surviving our own initial experiences with heart disease.
In other words, we knew about how our hearts worked (or didn’t work) because of what’s known as experiential learning.
If you’re reading this because you have been freshly diagnosed with cardiovascular disease, you may already be navigating the five identified stages of this learning, as described by researcher Dr. Patricia Benner.(2) Her study on experiential learning is based on the pioneering research of the Dreyfus brothers at Berkeley, described in the book, “Mind Over Machine: The Power of Human Intuition and Expertise in the Era of the Computer.”(3)
What this means is that, whether you’re a student nurse, a chess player, an airline pilot or a new heart patient, you’ll learn as much (some even insist more) about what you need to know from your own day-to-day lived experience as you will from formal structured lessons, textbooks or patient information brochures.
Here’s how these five stages described by Dr. Benner can look to the heart patient:
1. The Novice Patient – wants to be given a manual, told what to do, with no decisions required
Newly diagnosed novice heart patients have had no lived experience with this terrifying situation. So novices are taught basic rules to help them adapt (for example, how to correctly take your nitro to relieve the chest pain of angina).
These rules may also include doctors’ recommendations about heart-healthy eating, lifestyle improvements, or how to stop smoking. The patient discovers online resources and becomes interested in learning more about the specific diagnosis and treatments as part of the sense-making stage of their progress. The rule-governed behaviour typical of the overwhelmed novice Patient is extremely limited and inflexible. “Just tell me what I need to do…”
2. The Advanced Beginner Patient – needs a bit of freedom, but may be unable to quickly describe which parts are more important than others
Advanced beginner heart patients are those who have coped with enough real situations so far to notice the “recurring meaningful situational components” of their diagnosis. If they are very, very lucky, they may be among the minority of heart patients referred by their cardiologists to a life-saving cardiac rehabilitation program, for example, where they carefully follow the scheduled exercise plan. By now, they are able to relax and trust their own bodies far more than at the beginning. They start to formulate their own guidelines to influence day-to-day decisions based on personal experience.
3. The Competent Patient – wants the ability to make plans, create routines and choose among activities
Competence develops when heart patients begin to be consciously aware of actions in terms of long-range goals or plans. The competent heart patient has spent considerable time figuring out what they can or cannot do by now, and how this new diagnosis may affect day-to-day life, and may also have a growing feeling of being able to cope with and manage the many aspects of heart disease so far. But this person may not yet have enough experience to recognize the situation in terms of an overall picture.
4. The Proficient Patient – the more freedom you offer, the more you expect, and the more you’ll get
The proficient heart patient perceives situations as wholes rather than in terms of chopped up parts. These heart patients can now understand their situation as a whole because they perceive its meaning in terms of longterm goals. They learn from experience what typical outcomes to expect in a given situation and how plans need to be modified in response to – or even to prevent – these outcomes.
5. The Expert Patient – can write the manual, but doesn’t necessarily follow it
The expert chess master, when asked why he or she made a particularly masterful move, will just say, “Because it felt right.” The expert heart patient no longer relies strictly on an abstract treatment guideline to connect understanding to appropriate action. By this stage, the expert patient has an intuitive grasp of each situation and can zero in on the accurate region of the problem without wasteful consideration of a large range of unfruitful, alternative diagnoses and solutions. For example, they’re beginning to recognize the subtle difference between “normal” chest pain of angina that just requires a spray of nitroglycerin compared to the kind that requires an immediate 911 call. If mistaken, their way out of a wrong grasp of the problem is by using learned problem solving skills.
As I like to tell my women’s heart health presentation audiences, your only job as a new patient is to now become the world expert in your own particular diagnosis.
1. Visit my Heart Sisters patient-friendly, jargon-free glossary of hundreds of definitions of confusing cardiovascular terminology.
2. P. Benner, “From Novice to Expert,” American Journal of Nursing, 1982. (3), 402-407.
3. Stuart E. Dreyfus, Hubert L. Dreyfus, in Chapter 1 of “Mind Over Machine: The Power of Human Intuition and Expertise in the Era of the Computer,” (New York, Free Press, 1986).
Q: Where on you on this 5-stage journey to becoming an Expert Patient?
This post was also picked up as a guest post on The Mighty