When I started my internal medicine residency, I was pretty sure I was going to rock this primary care thing. I knew the drugs for hypertension, the guidelines for diabetes management, and depression management seemed like nothing more than an algorithm. I felt buoyed by familiarity as I looked at the problem list for my first primary care patient: basically diabetes, hypertension, and depression.
As I opened the exam room door that early July day, I smelled the urine from my patient’s catheter before I even saw him. He sat in a motorized wheelchair, one leg amputated, and he didn’t make eye contact.
I began to feel a little nervous. I thought it best to get past the niceties and delve into the “real” medicine.
“What’s your blood sugar in the mornings?”
“My daughter is graduating police academy this month.”
“I see. You must be very proud of her.”
“So tell me about your sugars.”
“My other daughter is going to have a baby. I’m going to be a grandfather!”
“That’s wonderful! So you want to be around for your grandbaby. Are you checking your sugars?”
“All I want is to be a grandfather.”
And on and on. Thirty minutes later, I stand up and put my hand on the doorknob. Before I leave, he says, “I know you’re going to take good care of me, doc.”
I leave the exam room and realize I have no “medical” information or idea about how to address my patient’s diabetes, depression, or hypertension.
The first year that I was his primary care doctor, I saw him 16 times. He sees nine specialists and has an appointment with one or another of them every 11 days. Many of those visit notes end with “Please return to your primary care doctor for management of diabetes and hypertension.”
In year two, disaster struck. In October, he developed a small wound on his foot that became gangrenous. He finally went to the hospital and didn’t return home again for three months. He had his other leg amputated and developed heart failure that turned into kidney failure, and he progressed to dialysis by January.
I stopped visiting him in the hospital in December. I felt sad and guilty that we didn’t avert this crisis. I dreaded his post-hospital follow-up visit. I was sure that he would see how I had failed.
I see him for follow-up in the same clinic room as our first appointment, but a year and a half later, I feel older and wiser. I walk in and he actually smiles. I hesitate. “It’s good to see you, doc,” he says.
He now goes to dialysis almost every other day. But other than that, for several months after his hospitalization, I am the only doctor he makes the now extreme effort to see. I think it’s because I’m the only one who knows how many times he has had his nephrostomy tube placed and then inadvertently displaced. I make sure that he gets the interventional radiology appointment when radiology doesn’t return his calls. I email daily with his psychiatrist to get him mobile services because he has no other way to get regular therapy. I am the only one who has an updated medication list because I’ve seen his pill bottles on his nightstand. I know that he used to crawl up the stairs but now is mainly stuck in the basement. I have also seen pictures of his new grandson.
I feel lucky that as a resident, I am able to spend a little more time with my patients, on the phone with their specialists, and managing all the details necessary to make sure they get the care they need. Each new medical event seemed to require a whole new group of people — specialists, nurses, pharmacists, physical therapists, psychiatrists, social workers and case managers — pulled together and coordinated through an array of texts, phone calls, emails, and the sharing of medical records.
This time spent is certainly not the norm in primary care. I worry that after residency, I will struggle to do good work in an inflexible, visit-based primary care system. The extra time I spent with this patient, and so many other complex chronic patients like him, was the minimum he needed to survive. In order to sustain this level of care, we must transform how we pay for primary care, for example through risk-adjusted, capitated payments. And care delivery must be transformed as well to provide patients with all the diverse health care providers they need with greater efficiency and ease.
My patient is difficult, scary, and frustrating, but our relationship is a big reason I chose to be a primary care doctor. I am able to be present for him and know everything that happens to him even when his many other doctors do not. He has now avoided hospitalization for six months — the longest period without hospitalization since my intern year, and we both think that is a victory.
Eunice Yu is an medicine resident who blogs at Primary Care Progress.