Disappearing

In Uganda, when someone dies they sometimes say that person "disappeared."   Given the perilous state of health that many of the patients are in, I was not surprised to see my first deaths only three days into working in Mulago hospital.   There are only six ICU beds (and two are now closed) for the 1500 bed hospital, so many of the patients on the ID ward would certainly meet ICU admission criteria by our standards but are not transferred off the ward because their conditions are rarely reversible and ICU beds are so scarce. 

The first young woman I saw "disappear" was in her 20's and had come in altered and febrile, with a non-focal but grossly abnormal neuro exam, stiff neck and toxic appearance.  Her eyes were open with a vacant gaze, she grimaced and made slight movements to pain and was completely nonverbal.   She had HIV with an unknown CD4 count and was not on anti-retrovirals.  Bacterial, cryptococcal and TB meningitis were all possible causes of her presentation, and though her immunocompromised status and altered mental status would have bought her a head CT in the US, the team proceeded to lumbar puncture without the cautionary step because it was too expensive.  The patient's husband helped her onto the basin on the floor before the procedure.  She was limp as a rag doll as he lifted her back up to the bed.  I held her legs in place as she squirmed slightly when the senior house officer, Elizabeth, expertly passed an ordinary 18 gauge needle into her subarachnoid space.  The clear cerebrospinal fluid gushed initially, then tapered off to a few drops.  She withdrew the needle and we repositioned the patient and walked away, she to send the CSF to the lab and I to retrieve an NG tube so we could feed her while she was too altered to take food by mouth.  When we returned to the bedside, we immediately noticed that she was no longer moving, and did not even have the usual rise and fall of her chest.  Her pupils were fixed and dilated.  Her carotid pulse was present under my fingertips at first, but drifted away after a few moments.  The intern did a pantomime of compressions over her chest, then shut her eyelids and declared her dead.   Her husband shook his head and let out an angry sigh. 

In the next bed was a patient I had expected to pass much sooner than she, another woman in her 20's with HIV who had come in altered, her pathology likely immune reactivation syndrome of tuberculosis meningitis.   She had become progressively obtunded over the past night and was visibly aspirating while we were at her bedside, as she likely had been doing for hours.  Her breathing was fast, shallow and coarse.  She looked terrible.  On rounds we discussed what we could do for this septic patient in acute respiratory distress.   We gave her a few liters of fluid, "broadened" her antibiotics from ceftriaxone to ceftriaxone/flagyl to cover anaerobes, left the suction machine at her bedside to manage her secretions, and kept her on oxygen.  It was not enough.   Later in the afternoon she looked worse, her eyes rolled back in her head, her breathing ominously loud.  I suctioned her, and felt increasingly helpless knowing that this woman was so close to the end and there was nothing more we could do.  Finally, I took her chart, a pile of papers fastened together, and walked over to the pharmacy.  

"What opioids do you have on formulary?" I asked the young man sitting in the closet sized space.  Morphine, he told me.  IV?  Of course not.  But they might have some in the Palliative Care office, he suggested.  My eyebrows shot up.  He walked me down the hall to another closet sized room with a half dozen people inside.  An elderly nurse in crisp whites with an enormous bosom introduced herself as Florence.  

"There's a patient who's dying on the ID floor," I began, after introducing myself.  "What can we do?  I heard you have morphine." 

Apparently, Florence had never been consulted from the ID ward.  Her patients were almost exclusively oncology patients, though she also had some end-stage renal patients.  She came with me to the bedside and nodded.  "We have liquid morphine," she said, then told the family where to go to get it and when they returned with the bottle, she poured a little into an empty water bottle and gently instructed them how to measure the medicine into a thimble sized cup and deliver it with a  syringe through the patient's NG tube.  She described how to read the patient's expressions and noises even if she couldn't tell them about her pain.  They nodded in understanding, and appeared afraid but grateful to have something to do rather than just watch their loved one slip away. 

When I returned the next day, the young woman's bed, and she, had vanished.  I realized then that every day there were actually fewer beds than the day before, that the first death that I witnessed was just the first one that happened during the day while I was here.  It was easier to think of those patients as disappearing, though I still felt a knot of frustration in my throat thinking how little we did for those two patients.  Elizabeth, the senior house officer took the post-LP death particularly hard.  I learned later that she and her family had buried her little brother, only 22, over the weekend after he died of TB meningitis.  Elizabeth is a smartly dressed, bright young woman about my age.  I can relate to her so much more than to the patients in Mulago, most of whom are incredibly poor and chronically ill, with limited access to healthcare.   Yet her family was also vulnerable to preventable illness and loss that is hard to imagine at home.  I don't know how she came back to work, and continued to practice medicine immediately after her brother died.   She carried herself with professionalism and grace, but it was clear in her eyes that no one really "disappears" to their loved ones.

And until everyone can afford better public heath and greater access to healthcare, it is encouraging that there are people like Florence.  I am certain that the proportion of patients near the end of life far exceeds her capacity to care for them, and the ability to identify an appropriate point for shifting focus from "aggressive" measures to palliation is as much of a problem here as it is anywhere.   It is so easy to feel overwhelmed thinking of all of the suffering.   But each life is unique and precious, and worthy of care and attention right until the end.  And any dose of Florence TLC is better than none.