I had the great privilege of speaking to students in Stanford Medical School's Engage & Empower Me: a course on patient engagement design on Feb. 20, 2014. What follows is the text from my speech, which preceded a conversation with Dr. Roni Zeiger and Gilles Frydman, co-founders of online community, Smart Patients.
Healthcare providers are no strangers to code talking. The ICD-9 tells us that 268.9 is an unspecified Vitamin D deficiency, while 728.96 indicates necrotizing faciitis. Patient summaries may include NKA (no known allergies), PVD (peripheral vascular disease), or FTT (failure to thrive). Such numbers and abbreviations mean little to nothing outside the medical office, but to providers, they are a means to quickly communicate about a patient.
But patients are code talkers too. We speak in code to our families, to our medical providers, and to one another. And like the Navajo, our words’ meanings undergo subtle changes in context.
Consider the word — tired. Does it indicate a need to nap or muscles weak from physical exhaustion? Does its meaning include mental fatigue or emotional anguish? Frustration, anger, or fear? Does it indicate having given up? Does it mean acceptance of the inevitable?
As a patient, it means all those things to me, which is why I have a hard time even saying it — “I’m tired. I… am tired.” The very act of uttering the phrase makes my shoulders droop as if in defeat. To be tired, to admit to being tired, is to admit that the weight of life and what feels like a struggle simply to stay alive is a burden that I need help to carry.
It’s also what I say when I don’t feel like saying anything else, when the full litany of ailments and aches, work and personal demands is just too much to explain. It’s what I say when I want to be left alone, when I’d rather allow the assumption that it’s nothing more than a late night or an early morning that’s gotten me down.
But my fellow patients know my code. They know it because while our illnesses, procedures and medications may not be the same, we still have shared experiences, and these unifying experiences are what give us the empathy to understand the meanings that lie below the surface. My fellow patients are anything but impartial, objective observers in this experiment of life. Their subjective view has been informed not only by textbooks and statistics, medical journals and clinical trials but by the brutal truth of living with disease. Some may thrive and some may die, but if you listen closely to their code, they are telling you how much words like A1C and metastasis can really mean.
Doctors, you must not only hear your patients’ words but listen for their context. When the father of four with a cardiac history makes an excuse and says he’s been busy, ask him about his life’s priorities. Your non-compliant patient may lack the support he needs at home to make serious changes. When the teenager with Crohn’s disease isn’t following through with medication management, ask her about coping with an invisible illness in a social environment.
Patients, work with your doctors to translate your needs and theirs. Help them provide their best level of care, as they cannot treat what you do not disclose. Understand that you, as the sole occupant of your body and your life, are therefore your own best advocate.
Together we have the knowledge and experience to break one another’s secret codes and instead learn to speak the language of compassion. One’s health is defined by more than tests and measurements. It is a complex series of events that requires deep analysis of physiological, sociological, and psychological factors to understand. Health substantiates our being as creatures made whole through treatment of body, mind, and soul.