I met Dr. Stulbarg when I was twenty-two, and had just moved in with my boyfriend Stephen. Stephen had cystic fibrosis, but he’d been unusually healthy until now, when his lung collapsed on the way to a party. Then, in the hospital, his lung collapsed a second time. We sat on his bed together, talking with Dr. Stulbarg about what would happen next.
Stephen had told me about Dr. Stulbarg already. Stephen loved that he was direct, crisply funny, and had been a philosophy major in college. Dr. Stulbarg never pretended that medicine had all the answers, but he was deeply engaged in the mystery. In this moment, I wished he would at least pretend to have all the answers. Instead, he explained that they’d put a second chest tube in but they couldn’t guarantee it would work. He described a procedure called pleurodesis. “Sounds painful,” I said.
“Yes,” Dr. Stulbarg allowed, and I felt my own affection for him, for the way he didn’t shrink from the question, but also didn’t shrink from his proposal. And for what he said next. Stephen would be sedated, but his body would go through the motions. “I don’t want you anywhere near this room,” Dr. Stulbarg said to me.
This would be the first of many times that Dr. Stulbarg looked out for me. I don’t think it was because he had a special fondness for me, or for Stephen. I think he understood, as any thoughtful doctor would, that Stephen’s health was linked to mine, that since Stephen would rely on me heavily, he would be wise to pay attention to both of us. Though this is important for any couple in which one person suffers a serious illness, we may have been especially in need. We were young — twenty-two during that first visit, and twenty-five when we got married — and we had no idea how long Stephen would live.
This is where Dr. Stulbarg did his best work. During appointments, he and Stephen talked about how to make decisions given the absence of years ahead. He was not only comfortable with mortality, but with the more stigmatized outgrowths of chronic illness – depression, and dependency. He helped Stephen live longer, but maybe more importantly, he helped him live fully.
Looking back, I think a lot about how Dr. Stulbarg was able to provide the kind of care he offered. Yes, he may have simply been an excellent doctor, but what kind of environment helps the best doctors thrive? The care he gave Stephen took place fifteen years ago. I wonder if he could have found time for those conversations now, had he been required to do fifteen minutes of paperwork for every appointment, or squeeze four patients into an hour, or regularly check his computer screen.
The care he provided was also possible because of the way we conceived of doctors as a culture. Stephen was a patient at an interesting crossroads in doctor-patient relations. We were making the transition away from the Marcus Welby-type role — the doctor as all-knowing, to the doctor as facilitator. And while it’s important to empower patients to take charge of our health, this shift has unfortunately coincided with a shift to managed care, to insurance-driven medicine, to the idea of patients as consumers. I find this ominous. The patient as consumer means that the doctor is simply a service provider, interchangeable with any other service provider. Gone is the relationship. And with that, gone is quality health care, for a number of reasons. For one, the doctor doesn’t know his or her patients deeply, as Doctor Stulbarg knew Stephen (and even me). For two, we need to think carefully about who is going to want to take this “service-provider” job. Being a doctor is still well-respected, as being a teacher used to be. Both professions are alchemies of knowledge, skill and art. Look what we’ve done to the teaching profession by undervaluing it, and you’ll see where the medical profession may be headed.
I met Dr. Stulbarg when I was twenty-two, and had just moved in with my boyfriend Stephen. Stephen had cystic fibrosis, but he’d been unusually healthy until now, when his lung collapsed on the way to a party. Then, in the hospital, his lung collapsed a second time. We sat on his bed together, talking with Dr. Stulbarg about what would happen next...