Abstract
It’s always better the second time around.
For starters, I’m not clueless anymore. The hanging bag of liquid draining into your arm? That’s there because your legs are a little edematous and your urine output is low today. When I was fourteen and my mom’s legs were swollen like that too, all I could do was adjust her socks so they wouldn’t pinch her ankles too much. But today, I have Lasix.
Today, I’m also armed with a stethoscope, pen light, reflex hammer, and the sixth edition of Pocket Medicine. Although wearing all of it in my short white coat makes for a clunky ensemble, I don’t mind. The tools, the knowledge– this is what I didn’t have ten years ago, what I never had. But now, this is my job and you’re my patient. When you tell me your pain is “punching you in the gut,” I’m almost delighted, because unlike ten years ago, I can have your pain medication increased. Unlike ten years ago, it helps.
For the first time, I also have access to your chart, which means I can know exactly what’s going on. I can read (and mostly understand) what your doctors are thinking. More than that, I actually know your doctors. I sit with them at lunch and learn their kids’ names. This isn’t how I knew my mom’s doctors, who always seemed distant even when they were standing right in front of me. Their explanations were opaque and sometimes dismissive, yet my family still clung to any moment we could catch with these elusive white coats.
I make a point of giving you the attention I feel like my mom never got. We get to know each other for a few days, and on one hot July afternoon, you’re restless and irritated so I help you into your wheelchair and accompany you around the ward. You settle down, then quietly ask about the CT scan from yesterday. I assure you I’ll tell you the results as soon as they’re back. This turned out to be a lie.
It’s always worse the second time around.
Before you were my patient, my mom was the only patient I knew. No one else in my life back then was as sick as she was, for as long as she was. This isn’t true anymore now that I work in a hospital. I didn’t blink an eye when I first took your history and found out you’d had cancer before. But now, I’m revisited by something I first encountered with my mom: a terminal diagnosis.
Where my understanding may have been vague before, there is now all too much detail. The words in the report are precise and unflinching, like daggers: “Increased diffuse metastatic disease replacing nearly the entire normal hepatic and renal parenchyma. Recommend obtaining palliative care.”
My mom had processed her own diagnosis long before she told me about it, but over the next few days I watch you grapple with your news in real time. You become withdrawn, bitter, tearful. During rounds one morning, you yell anxiously to me, “Please, help me! I’m not ready to die!” I feel myself recoil in guilt. When I was a teenager, I wasn’t expected to know what to say or do for my mom. My speechlessness and inaction now, however, feel like an admission of incompetence and failure.
You deteriorate quickly and start doing things I remember my mom did towards the end. But I don’t get to look away; instead, I have to observe each change and document it in your chart. Your edema becomes severe and spreads to your abdomen and scrotum, making it extremely uncomfortable to move, so you become bed-bound. Your white blood cell count climbs into the 40s, higher than I have ever seen. Your urine bag is empty for the third day in a row. You become encephalopathic and stop responding to your medications and to me.
In your last moments, you resemble my mom so much that I try to avoid your room altogether. I can’t bear seeing your greasy, pale eyelids barely covering your eyes, which are rolled back in their sockets. The slow grate of your agonal respirations, the foul odor of your breath mixing with the smell of your uneaten lunch—I hate my senses more than ever before.
It’s always different the second time around.
Before sitting together with your family to discuss goals of care, my attending pulls me aside to ask if I’ve ever been in a meeting like this before. I say yes.
While the rest of your care team shares their medical assessment and advice, I remain silent. I’m struck by how much your family, at this moment, resembles mine from a few years ago. It’s in their posture, curving into each other for support, their eyes, constantly darting downward to hide more tearshed. I feel almost as if I’m sitting on the sofa with them, but instead, I’m on this side of the room listening to a doctor speak gently: “We can’t change the outcome, but we can focus our efforts on changing the journey.” For the first time, I believe these words.
On our last day together, your family tells me about you. As they reminisce over photos, I catch glimpses of your life in retrograde. I let these private memories hang in the air. They’re not for me. Next to people who have known you for a lifetime, the sadness I feel seems strangely disproportionate– after all, you and I had only met ten days ago.
Nonetheless, I decide to honor this brief period by writing your death summary. It’s nothing like the eulogy I penned for my mom’s memorial, but it is the last piece of your medical record, so I spend a long time on it. I’m proud of it.
Yet amidst my formal jargon, what fails to come through is my gratitude for you. You were my first patient. Without knowing it, you connected what I know about medicine from the patient’s side with what I am learning about it from the provider’s side. I had long thought that this gap would be impossible to bridge and perhaps better left that way, with my memories and sensitivities stranded on the opposite bank, away from me.
Caring for you brought them rushing back. Though painful at times, I’m reminded of the weight that these experiences can carry for patients and providers alike. In my case, they have taught me to not be ashamed or afraid of my humanity. I see now that it is my best offering, especially in this field called medicine. It may have been a lesson I needed to learn twice, but it’s one I won’t forget for many times to come.
