Hi hello, I’m back, and I’d like to share a story about something that happened at work today.
Before I do that, though, I guess I should tell you what exactly it is I do here in Swaziland- besides taking cool pictures of exotic places, that is. My research, officially, is on how the Teen Clubs, the support groups for HIV+ youth, operate in Swaziland. I was fortunate enough to receive approval to volunteer full-time with the gold standard of the Teen Clubs, the Baylor College of Medicine social team, as part of my research. So I spend my weekdays working in an office on the second floor of the Baylor clinic in the capital of Mbabane.
What does this work actually entail? It really depends. On good days, I get to interview doctors and other health workers about the work they do, or else read an article that gives me a better understanding of Swazi culture and politics. On bad days, I edit poorly written documents, make powerpoint presentations for meetings that don’t happen, and draft work plans.
Even the bad days can still be thought-provoking though.
Charting Life and Death
When I walked into the Baylor clinic for work today, I knew it wasn’t going to be a good day. I was immediately handed a beefy stack of papers and was asked to update the medical records for the patients at the Teen Clubs- that is, the HIV+ youth between the ages of 10-19. For those of who who’ve never done this before, it’s basically data entry. You look at the doctors’ notes, then find the patient in the database and transcribe the notes into the patient’s health chart. And repeat, ad nauseum. It’s probably the most boring task you can do in a health clinic.
For about the first hour, I entered the updates mindlessly, efficiently, as the task called for. In the morning fog, the names and numbers were just data points.
And then, in a moment of clarity, I remembered that each chart represented a person. A simulation created from the scrawls of doctors and the smooth transcriptions of clerical workers. But in the unblinking eyes of the medical system, the chart is not just a representation of a patient. It is the patient. And with every update, I made the patient more real. “Patient has contracted TB.” Bam, there’s a respiratory system. “Patient no longer takes their medication.” Now we have a mind, a psychic and social state. Now a heart- now a brain- now a face. The next time a doctor sees this patient, they will see a slightly different person before.
HIV, as we probably all know, is currently incurable. So in a strict sense, there’s really no good update for an HIV patient. “Patient has reached 100% adherence with their ART (antiretroviral therapy).” Sure, but patient still has to take ART for the rest of their life. “Patient has reached a healthy weight percentile.” Great, but patient will still have to constantly count their calories for the rest of their life. Patient still has HIV. Patient may never be healthy.
I vaguely consider what my chart would look like. “Patient has not slept enough,” my chart would warn. “Patient has not been to the gym in two days.” “Patient suffers from boredom and distraction at work.” It’s hard to imagine a doctor looking at my chart and feeling scared for me, feeling anything besides a clinical sense of duty. For now, I am a chart that inspires no sympathy or pity. Thankfully.
Not so with many of the charts that I updated. There are only a small handful of ways for an HIV patient to have a “good” update; there are a million ways for it to be bad. “Patient lost to follow-up.” Translation: patient did not return to the Baylor clinic. Patient is likely receiving poor healthcare, or none at all. “CD4 count has dropped below 50.” Translation: patient is highly susceptible to infections. ART is not being taken or is not working. “Patient is malnourished.” “Patient has contracted TB.” Et cetera.
And then there was the dead patient. A girl, 13 years old at death. A pen scrawl: “Patient deceased at MGH on 12/11.” Chart status: closed. With HIV, the only time the chart closes is when the patient has died.
But I couldn’t resist taking a closer look at her chart. Very little detective work was needed to figure out what happened; the updates told the story in uncompromising clarity.
“Mother declined ART at admission but wants to follow up at Baylor.”
“Patient shows inconsistent use of ART, adherence rate is estimated at below 70%.”
“Patient has been diagnosed with malnutrition and TB.”
“Patient deceased at MGH on 12/11.”
And that’s it. This is a medical story without the dramatic flatline moment where the brave doctors try in vain to rescue the poor girl. It’s the story of a slow and steady wasting away. She had the treatment, but for whatever reason- perhaps she was from a village where they scorned Western medicine- she was unable to take it. I imagined the doctors and nurses watching her health deteriorate, tut-tutting sadly, each visit ending in another uncompromising note in her chart, an unheeded warning sign.
Eventually, she passes. But there’s a liminal moment where she’s still just another sick patient in a database, an open chart. In the short period of time it takes for the note to pass from the doctor’s hand to mine, she’s neither alive nor dead. The system will not acknowledge her death until I close her chart.
As I type out the words scrawled on the paper, I try to feel what the doctor might have felt when he pronounced her dead. But all I feel is emptiness.