I recently took call on the pediatric ward. Our team was caring for a young patient facing a new diagnosis of a chronic illness. In addition to stabilizing her symptoms, coordinating care with her new specialist, and managing her medications, I also see it as our job to make sure she and her family start to understand what is going on and what this diagnosis means for her.
How does this look currently? Patient education is often an afterthought. On a busy ward or in a hectic clinic, time spent on counseling and education often gets short shrift. Of course, this is in no small part due to the way our healthcare system reimburses care. But, I also think it is because we (physicians) aren’t taught to do it well, and we (the system) are not mobilizing our resources.
Typically, “patient education” consists of talking. A physician or nurse explaining the diagnosis and recommendations for treatment. Hopefully, this is done well and in a language the patient can understand. Here’s the problem. We know that people remember little of what they hear in the clinic or hospital. There are obvious reasons- things are not explained well, too much medical jargon, too much information at once, too much stress at the time the information is shared.
So, we give handouts. The internet has made this part easy. We have myriad handouts on thousands of topics at our fingertips. But, there’s a disparity here. The vast majority of available information is in English and assumes a high literacy level.
The day I came on service to help care for this patient I noticed a handout describing her diagnosis sitting on the bedside table. So, we had gotten this far, which is great. But, it was in English. Her parents don’t speak English. The team searched the typical sites for a better option and came up empty. Here’s where the better way starts. . .
What if the simple fact of receiving a diagnosis- say diabetes, cancer, or multiple sclerosis- set in motion a series of automatic events. What if short videos on this patient’s condition were made available to her on a laptop or iPad during her hospital stay? What if a text was sent to her mom’s cell phone with a link to an e-patient community that could provide support and information? What if I could ask my EMR to print out a handout in the patient’s language and specify that it be modified to the appropriate reading level? What if a week after they went home this family was automatically sent a series of questions that assessed their understanding of medications or recommended care and their primary care doctor was emailed regarding any significant areas of concern?
This is not just all pie in the sky stuff. I attended the Medicine X conference recently. The conference addressed how “emerging technologies will advance the practice of medicine.” It confirmed for me that we already have the technology to provide this kind of care. There are smart people who have thought of all of this and much more. There are patients who are eloquently demanding that we do better. There are physicians who are leading the way by creatively integrating new media into the way they practice medicine.
But, I have to say this. What I saw this weekend felt worlds away from what I see day to day in my clinic just down the road. And it’s not because doctors don’t care or people don’t want to do better. I work with excellent physicians and nurses who care deeply for their patients. But, physicians everywhere are working within a system that doesn’t support their efforts to partner with patients and give better care.
The kind of care I describe above, the kind of care that is possible, is what all patients deserve. This is what all patients need- regardless of their ability to read, or what language they speak, or how much money they have, or which doctor they see. And, this is what healthcare needs. It’s better for patients, for providers, and for the system. How many re-admissions (and the associated costs) could be saved simply by ensuring that patients understood their condition, how to dose their medications, and had access to their own care plan?
So, I want to know what it will take to scale Medicine X to the masses. I want to hear more about how we will leverage the knowledge and technology we already have and use it for all patients. Perhaps things will change when we have research suggesting that it is cost effective to provide better care. Perhaps things will get better when we start teaching medical students about the new literacies early in their training. I am excited to be a part of all of this.
If our patients don’t really understand their diagnosis, if we don’t make sure they are partners in their treatment, can we really call it healthcare?
Heidi Roman is a pediatrician who blogs at My Two Hats.