This is probably the most difficult question that a physician is confronted with. A patient is stricken with a new disease or problem and before it even sinks in or is fully comprehended, the patient wants to know “why” or “how” long before they want to know what are we can do about it.
Patients want understanding and clarity more so than a prescription.
The “whys” are easiest when they’re related to trauma, infection, or the misadventures of drug therapy. More difficult are disorders for which we don’t have a clear etiology, even though we have an understanding of pathogenesis that informs an evidence-based approach to therapy.
Thus, we don’t have good answers for “why did I get rheumatoid arthritis” or lupus or psoriasis.
Regardless if they have unhealthy life styles, go to church or monitor their cholesterol levels, they want to know why. Patients are surprised, uniformed, undeserving and incredulous that this thing has happened to them.
While there are 5 stages to dying or grief (denial, anger, bargaining, depression, and acceptance), there are countless additional emotions that accompany a new diagnosis, disease and poor health. You can add confusion, anger, anxiety, fear, vulnerability, and shame, to mention a few.
In frustration, patients will try to reconcile this problem by pointing to family genetics or a bad diet. Yet, you usually cannot connect those dots to blame family history or diet coke for their illness.
Here are my suggestions for on how to address the "why".
- Never shrug, minimize or be flippant: in the past I’ve wrongly made the declaration, “heck, if I knew why or how you got RA, I would’ve already won the Nobel Prize”. This wasn’t well received by the patient left to flounder with the unknowns and enigmas of a newfound disease. It colored me as flippant and uncaring of my patient’s worries.
- Disease is often a perfect/imperfect storm: I believe it’s important to point out that disease and what has happened to your patient is the result of many factors giving rise to a mechanical or immunologic breakdown. Same as with a car that has a new and costly problem that took time, wear and tear and another new event to bring the car into the shop. It’s just that we do not often know what sequence or timing of events caused RA. Similarly, studies in preclinical RA have shown us that environmental triggers and epigenetic changes lead to autoimmunity and with time may evolve into fully manifest seropositive RA. I dissuade my patients from believing that all disease is inherited, as only a handful of our disorders are genetically inherited. I stress that this perfect storm started a while go with mechanical forces, degenerative change, epigenetic alterations, immune changes and time leading them to the big black hole of I don’t know.
- Focus on the foreseeable: It’s crucial to move from “spilled milk” unknowns to that which is known and foreseeable. By this I mean you should explain what we do know about what’s going on biologically, mechanically or emotionally in that person’s body and how your understanding now becomes the basis for which your most affective therapy can be offered.
- Focus on the big challenge: While your patient's questions of why can leave you both unsatisfied, it’s far better to steer the conversation to the challenges ahead. The physician needs to create the challenge that puts the patient in charge of the necessary steps it will take to overcome or manage this new diagnosis and array of symptoms. The sooner you and the patient are aligned, the better the outcomes that lie ahead.
- The New Normal: Patients will need you to guide them, and along the way you need to give them hope, goals and rules to improve. The sooner they understand their illness, the sooner you can teach them to accept (that which cannot be changed) and expect a new normal. To NOT do so is to live in de-Nile.
- What’s the rehab? Heart attack, stroke and hip fracture patients all are required to do the “rehab” necessary to help them recover. The same plan should be laid out for those newly diagnosed with GPA, gout, osteoarthritis, or JIA. The rehab will likely involve other specialists and support services that you may not usually prescribe – but then again this is your new prescription to the difficult question of “why”.