If only I could flip open the yellow pages and scroll through the list of specialties. I’d run my finger down the page, past “Obstetrics/Gynecology,” “Plastic Surgery,” “Podiatry,” “Pulmonolgy” and “Rheumatology” until I landed on “Sarcoidosis and Other Granulomatous Diseases.” Then I’d call one of the numbers listed and make an appointment. Wouldn’t that be nice?
Unfortunately, locating a sarcoidosis specialist is proving to be much more tedious, time-consuming, and frustrating than my yellow pages fantasy.
It’s not just that I live in small city where we’re lucky to have even a pulmonologist (the medical specialty that most frequently studies and treats sarcoidosis). There aren’t many doctors who know much about sarcoidosis, and even fewer who have made it their mission to treat us sarkies. There are several lists of sarcoidosis specialists floating around the Internet. I’ve found them and have begun to research these physicians.
After six years with a bad case of this disease that has moved into almost every organ in my body, I’ve learned more than I ever wanted about working with doctors who specialize in a relatively obscure disease. Turns out that finding someone who knows a lot about sarcoidosis and how to treat it is only the start of the process–not the end, as I used to think.
But after hitting unforeseen roadblocks with two stellar specialists, I’ve come to learn that expertise in the field isn’t the only factor to take into account. The doctor also has to ready, willing, and able to communicate and collaborate with other physicians. The expert has to convey a treatment plan to the local physician(s) who implement it. Then the sarcoidosis doctor has to be available to respond to questions from the local doctors when the patient has a relapse, new symptoms, or problems with the treatment plan. My current sarcoidosis specialist is tremendously bad at this. He’s been too busy or too clueless to answer dozens of phone calls and e-mails my local doctor has sent since I had a flare-up several weeks ago. I landed up in the local doctor’s hospital with new neurosarcoidosis symptoms, including episodes of temporary blindness. “What should I do to help this patient?” the local doc asked over and over. “Should I change the treatment plan? What tests should I order? Should I send her to see you? Should I send her somewhere else?” He got no response for over six weeks.
When the local doctor finally got a hold of the sarcoidosis expert, the expert was condescending and vague. Even though the expert is recognized as one of the princes in sarcoidosis land, even though he is conducting clinical trials with several new drugs that hold promise in fighting the disease, even though he has seen and treated the worst and most bizarre cases of the disease, I’ve got to find a new specialist. The local doctor is quite rightly furious. He told me that it scares him to be left “holding the bag” when I am delirious with neurological pain. “I don’t know much about your disease,” he said in our last appointment. “I need a new ‘general’ to lead us.” I understand the local doctor’s anger and frustration, as well as his unwillingness to have this specialist “in charge” of my care. No matter how many papers this specialist writes, and no matter how many new drugs he finds to treat sarcoidosis, it won’t make a bit of difference if I have a seizure related to my neurosarcoidosis and he isn’t available to help the local doctor save my life.
After my experiences with this hard-to-reach specialist, I’ve realized that when I’m looking for a new sarcoidosis expert, I have to evaluate expertise and availability. I need to find someone that will focus on my case outside the hour-long appointment I’m allotted every six months. But there’s even more to keep in mind during my hunt for a new specialist. Once again, I discovered a key component to quality care the hard way. Soon after I was diagnosed, I chose an expert who was highly-regarded in the field, attentive, kind, and a fantastic team player. (In fact—because my first exposure to long-distance medicine was with a doctor who answered every phone call from local doctors and every e-mail I sent within hours—I thought this was the norm and didn’t make communication skills a criteria in selecting my current, inaccessible expert.) But my first sarcoidosis doctor couldn’t offer what I’ll call institutional support. Because my disease involves different organs—my lungs, heart, lymph nodes, brain, bones, liver—and because my treatment has caused a host of problems—prednisone-induced diabetes, cataracts, and menopause, to name just a few—I frequently need to see other specialists who know something about sarcoidosis and can work with the sarcoidosis expert. It works the most smoothly when I can make one medical pilgrimage to one medical facility every six months. I can see the sarcoidosis expert, and this doctor can then order tests and make appointments with cardiologists, neurologists, or orthopedists during my time there. But, if the sarcoidosis expert is like my first specialist and is associated with a smaller hospital (or even a larger medical center that doesn’t accommodate out-of-town patients easily, say by allowing for last minute MRIs), chaos reigns. Who will oversee testing? Where will it take place? How do other much-needed specialists get selected and how will they be incorporated into the team? This is especially problematic for patients like me who live in smaller communities with a dearth of specialists. It isn’t reasonable for me to make multiple medical trips every year—to see the sarcoidosis doctor, and then to chase down specialists to tend to the damage sarcoidosis has wrought to various parts of my body.
It shouldn’t be this difficult. And it doesn’t need to be. In his fascinating book Better, about how to improve the quality of medical care in the US, Atul Gawande addresses this issue of the near impossibility of finding the best care for a given disease without going through a six-year learning process of getting sub-standard care first. The problem is that—with one exception—no organization (governmental or non-governmental) track the performance and outcomes of doctors and hospitals in treating specified diseases. I can’t go to a Web site or call an agency to find the best place to go for sarcoidosis treatment. The exception that Gawande discusses is the Cystic Fibrosis Foundation, which compiles an annual list of the best (and worst) facilities for cystic fibrosis care. This foundation collects data on patient population, treatment options, and outcomes, crunches the numbers, and then gets some answers. The catch is, that until Gawande came knocking, they wouldn’t their findings make public.
We all need information like this. It’s a matter of life and death. It’s time for medicine to shed its aura of magical inscrutability and the falsehood that all doctors are equally omniscient. The whole business currently carries a whiff of the medieval guild. But doctors and hospitals should be judged like the rest of us—not by the starchiness of their white coats but by their performance. Patient outcomes depend not just on the brilliance of specialists, but on the quality of the hospitals where they work and on their willingness to work as part of a team.
I’m hoping that the wrong decisions I made in the past will help guide me in finding a new specialist. But I wish it wasn’t so nerve-wracking to find a doctor and that the stakes weren’t so high. I’ve heard that the Center for Medicare and Medicaid Innovation (CMI)—which will be created by the new health care reform bill—will start compiling data on various diseases and ranking hospitals accordingly. When I tried to track down specific information on this, I learned that CMI will be empowered to test innovations and that this ranking is just one of a host of programs it might test. We’ll have to see what happens. In the meantime, maybe all of us sarkies in Chronic Town can start some innovating of our own. I like the thought of a sarcoidosis-related agency compiling a list of the best places to go for treatment—just like the Cystic Fibrosis Foundation did. Maybe then, my dream of finding a doc by doing no more research than flipping through a few pages will come true.
Until then, does anyone know of a good sarcoidosis doctor?