The very first patient I ever met on my internal medicine rotation was someone who hated being in the hospital. He took every opportunity in the following ten days to remind us that he was waiting to be discharged. He was sick of the nurses coming in at five o’clock in the morning to draw his blood. Sick of being woken two hours later to be given medication. Sick of being woken again for some student to timidly ask: would he mind a physical exam? Yes, he minded. He minded the teams of people coming in and out of his room at all hours, demanding to know if he was breathing better yet, pushing on his shins, and listening to his heart.
Every morning, we filed into his room wearing awkward yellow aprons and cold gloves. He would squint at each of us in turn through his remaining good eye and demand to know if he was going to go home that day. The answer, inevitably, was no. We were sorry, but there was still more fluid to take out of his lungs and legs. We would have to reassess the crackles in his lungs and the edema on his back tomorrow. And his reply, inevitably, would be to roll his eyes and sigh.
The first patient I followed was a lovely lady who had been experiencing shortness of breath for the last week. Was she having chest pain? Yes. Did it radiate anywhere? No. Did she have a cough? No. Any associated symptoms? No. Was she feeling better on the heparin drip? Yes. Any questions she had for me? Yes: when can I shower?
This was, I assumed, a very reasonable request. After all, she had come to the emergency room yesterday evening. After the stressful experience being hooked up to EKG machines and having a hundred clinicians ask her the same questions, she probably wanted to clean up. Surely one of the nurses could help her take a quick shower.
No, said the nurse who kindly stopped to answer my question. The doctor has to put in an order for a shower.
We didn’t put in such an order because she was still on her heparin drip. That night, she was diagnosed with extensive bilateral pulmonary emboli. She didn’t get that shower until nearly four days later.
I had never before contemplated the sheer lack of autonomy that came with the territory of being a patient. Would I like to be woken up at three in the morning for imaging only to be woken up again at seven thirty to be asked by some annoying medical student how many bowel movements I’ve had in the last twelve hours? Would it be okay if I peed into a bottle kept next to my bed for the next few days? Check in with the doctor every time I wanted to take a shower? And per doctor’s orders: a clear fluid diet only for the foreseeable future — that’d be fine, right? Not that I’d have any say in the matter.
As physicians, we rely on the lab tests to tell us things that our patients can’t. We not only want to measure the exact ins and outs — we want to control them too. We see patients at our convenience even if it means asking them questions when they are barely half awake. For the majority of these patients, this is a burden to bear for only a few days with the promise of discharge lingering in the near future. But for many other patients who have to stay in the hospital for weeks at a time, waiting for their medical condition to stabilize, this life could easily become unbearable.
I don’t have solutions. In the grand scheme of things, I’ve barely begun to see the problems. There’s very little I feel like I can do to help, but I keep reminding myself how frustrating hospitalization can be for patients. My contribution to their care is time: time to help explain a diagnosis, time to discuss families, pets, the best donut shop in Boston. I can reinforce the fact that this hospitalization is just one page in the long story of their life, and if I am very lucky, help reshape their understanding of their health into a form that will fit better into their personal narrative.
My patient asked to see the images that had been used to diagnose her pulmonary embolism. I won’t forget the way she scooted to the end of the bed to view the CT-PA I displayed on a computer for her. The shape of her lungs were reflected in her glasses as she silently stared down the tiny clots in her pulmonary arteries, visual proof of the battle she was fighting.
I won’t forget the smile on the first patient I met when we told him he’d officially finished his course of IV diuretics. Completely dressed and sitting at the edge of his bed — pulling on his shoes and, finally, ready to go.