“Manage inflammatory bowel disease and its complications”
However, this is not exactly what our goals should be. One push in the patient-centered care community has been changing the focus from managing the disease to managing the patient who has (or might have) the disease. The difference in wording is subtle, but it gets more closely at what we are trying to get our learners to do.
The diseases about which we teach and train do not occur in isolation. They do not occur ex vivo. For all intents and purposes, doctors cannot “manage” GERD, nephrotic syndrome, or an abnormal ANA. But we can manage the patient with GERD, nephrotic syndrome, or the abnormal ANA.
I can teach someone to how to manage a disease: Take history, do an exam, maybe do some tests, decide on treatment. That’s the end of it. But it doesn’t get at the goal of medical education and training, which is manage the patient. Understand their anxieties. Counsel a patient about the risks & benefits of various treatment options. And certainly, figure out if the disease itself explains their clinical concerns.
Why could this be important distinction?
- It reduces anchoring: Anchoring plagues the medical profession. As much as I hate to say it, we give patients too many labels. These labels are often known as the “diagnosis”. Diagnostic precision is considered one of the hallmarks of a great clinician, but how often do we really know the patient’s “diagnosis”?
- The diagnosis can be based on symptoms (e.g., fibromyalgia), signs (e.g., hypertension), findings upon diagnostic testing (e.g., cancer), or occasionally the response to a treatment trial (e.g., GERD, when the patient improves with a proton pump inhibitor). Nonetheless, the diagnostic label we have placed upon this patient is based on our own current understanding of the biology of the disorder, as well as the examination skills (including the accuracy & precision) of the person making the diagnosis, including the physician, pathologist, radiologist, endoscopist, etc.
- When we see a patient with a previously-diagnosed disease (i.e., “Past Medical History) that may be pertinent to the presentation at hand, the details need to be sussed out, or we risk using information (the diagnosis) that is incorrect or incomplete. The most common example of when I use this in my own practice follows is when I see a patient with “refractory GERD“.
- It puts the patient at the heart of our care, instead of the disease: To date, disease management strategies & algorithms rarely incorporate patient values and concerns into the process. Here’s an example I come across every time I see a patient with achalasia.
- The optimal treatment for achalasia traditionally is either laparoscopic cardiomyotomy (Heller) or pneumatic dilation. We tend to reserve Botox treatment and medical therapy for patients with limited life expectancy, severe comorbidities, or unwillingness to accept the risks of and/or undergo pneumatic dilation/Heller.
- However, there really are several other management options:
- Per oral endoscopic myotomy (POEM): I personally still consider POEM investigational in the US, although some practitioners are offering it as routine. Some patients may want to get a treatment that is at the cutting edge, or may have strong desires to enter research protocols.
- Aggressive surgical management: For patients with “end-stage achalasia” could include a more aggressive surgical option, such as resection, transposition, or interposition.
- Gastrostomy: What if a patient decides that they really don’t want to do any of the other possibilities? A gastrostomy (aka feeding tube) can potentially provide adequate nutrition and bypass the need to take food & liquid orally. Yes, there are still the risks that the patient can aspirate on ingested material, but if the patient is willing to either forgo eating/drinking or accept the risk of aspiration, should we not abide by such a value?
- Do Nothing: How many times have you offered this to your patient? In a patient with achalasia, I regularly add this as an option. Why? Because it is a patient’s prerogative to decline any intervention, or “informed refusal“. As physicians we often make the assumption that patients are coming to us to get better. Yet there are patients who are just following their doctor’s orders, by taking medication, having surgery, or seeing consultants, without the knowledge or understanding that it is their prerogative to refuse any recommended treatment. Although we talk about medical necessity as if it is absolute, medical necessity in fact is relative. I suggest always offering this option, even when you do not necessarily agree that it is the best course of action.
What is my plea to educators?
When writing curricula, goals, learning objectives, and so forth, I suggest tweaking the titles ever so slightly. For example, the learning objective above could be changed to:
“Manage a patient with inflammatory bowel disease, including the extra-intestinal manifestations”
Or in the case of a patient whose diagnosis based significantly on symptomatology:
“Manage a patient whose findings suggest GERD”
I know it’s subtle, but the more we put the patient at the focus, the better we will get at the heart of what we are trying to do in training: help trainees improve the health & care of their patients, not just their diseases.