I am embarrassed. I am a specialist taking care of patients with inflammatory bowel diseases, which include Crohn’s disease and ulcerative colitis. I spend more than half of my time at work related to research regarding the benefits and risks of treatment options for these diseases. Specifically, I aim to translate the vast medical literature published on this topic into tools for patients (and their parents) to help them better understand the complicated trade-offs that need to be made around treatment decisions.
Why complicated? Well, a typical conversation during a far too short office visit entails explaining to a patient that my recommendation is to take a combination of medications to treat their disease. If they don’t take them, they have a significant risk of their disease progressing from an illness causing diarrhea, rectal bleeding and abdominal pain, to a problem that could necessitate multiple intestinal surgeries and even lead to an ostomy requiring a bag to be worn on their abdomen to collect stool. Seems simple enough — “I’ll take the meds!” But, then I tell them that these medications, although can be very effective, don’t work in everyone. Oh, and also — they might lead to serious life-threatening infections including tuberculosis… and cancer. Now I just made them scared that the treatment could be worse than their disease.
But this isn’t why I’m embarrassed. I think I’ve become fairly adept at explaining the trade-offs to them, and have even developed tools through my research to help them understand (and not be scared) that these medications can be extremely beneficial and be used safely. I believe that between my research and my institution’s dedication to the field of Shared Decision Making that I’m typically respectful that a choice for treatment should not be paternalistic but be “shared” with the patient.
Until recently I thought I was doing a pretty good job at this. However, I’ve had an awakening that I’ve been ignoring an entire aspect of the patient’s decision. The aspect of cost.
I of course understand that patients pay to see me in the office, pay for their colonoscopy, lab tests, their MRI scans and medications, but I have no idea how much. Furthermore, not everybody pays the same depending on their insurance company, co-payment plan, co-insurance, deductible, and other variables. Some patients may agree 100% with the treatments and tests recommended to them, but can’t pay either at all, or without giving up something they would far rather spend their hard-earned money on.
I’m embarrassed because I haven’t focused on this problem for patients, but even more so, because when patients ask me how much my recommended plan will cost, I don’t know. My institution does have a fairly slick website to estimate how much a patient will owe based on a set of variables, but to be honest, I’ve never suggested a patient check this. Even if I did, it’s not refined enough to compare the cost of specific treatment plans against each other.
Imagine going to a restaurant, asking the waiter for a recommendation for “what’s good today” and then finding out that there are no prices on the menu. You sheepishly ask how much it costs – and the waiter responds, “I have no idea, it could be free – it could be $2500, it depends.” But, they suggest that it will all become clear when the bill comes… in about three months. But don’t worry – it will be delicious. I’d walk out.
Shared decision-making has been about helping patients understand the trade-offs between treatment decisions in which there is equipoise (six in one, half-dozen in the other). Without question this is a good starting point. However, cost, the most practical, realistic and tangible part of a decision AFTER they leave the office is oftentimes ignored.
We’re not just talking the costs of the procedure, surgery or medication at that moment, but the cost over months to years when in comes to chronic diseases like Crohn’s disease, ulcerative colitis, diabetes or heart disease. Decision aids have historically delivered evidence-based data to assist patients in making a preference-based decision regarding treatment options, regardless of cost. I believe we should work on techniques to incorporate cost of care as an attribute for future decision tools.
Perhaps I’m the only one ignoring short and long-term costs in my discussion about treatment options with patients, but I suspect that I am not. I don’t know how to fix this problem, but I hope that we can start to address it. You wouldn’t buy a car, a new pair of jeans, plan a vacation or order off of a menu without seeing the price. So, why does it have to be so obscure in healthcare?
I’m not suggesting it needs to be free – it just needs to be clear. A knowledgeable patient is an engaged patient, and it is to no one’s benefit for them to “walk out” on their health.
Corey A. Siegel is Director of the Inflammatory Bowel Disease (IBD) Center, Dartmouth-Hitchcock Medical Center and Associate Professor of Medicine, Dartmouth Institute for Health Policy and Clinical Practice. He blogs at Engaging the Patient.