A common clinical saying: The definition of insanity is doing the same thing over and over.
Translation: If your treatment didn't work the first time, your approach is probably wrong. Try something else.
Celestina is 7-years-old and lives in Mozambique. From her village--across national boundaries and abysmal roads--to our clinic is no simple journey, especially for someone afflicted with bone-jarring pain. Only desperation pushes the poor and ill to travel that terrifying way.
A month prior she had been a healthy child. Then her legs began hurting so badly that she was forced to crawl. After that the fever came. Twice her mother took her to the village dispensary, and twice the staff gave her "LA" (lumefantrine-artemether), the current preferred treatment for malaria. And twice Celestina failed to improve.
So her mother took her back a third time, and a third time she received treatment for...malaria. This time she stayed for several days in the ward and received a drip of quinine. Then seizures commenced, the fever persisted, and quinine was clearly not working. Still, she went home with...oral quinine tablets for malaria.
By the time she arrived at Partners in Hope, Celestina was a bawling wreck, staring wild-eyed and crying violently at the approach of any stranger. I gave her a stuffed dog in an attempt to calm her down. She clutched it awkwardly, possessively. Her mother carried the child, legs drawn up to her chest, stiff and tender. The eyes sunk back deeply behind protruding cheekbones. She appeared as if starving.
As her mother related the medical history, I recalled a small Friends (Quaker) clinic near the Kenya-Uganda border. A team of us were visiting to help set up the HIV treatment program and to mentor the care team. A four year-old HIV-positive child, coughing for months, had four times been treated with amoxicillin for pneumonia. Yet still he lost weight and appeared deathly ill. I urged the physician assistant to start TB treatment instead of dispensing antibiotics yet again.
Very often clinicians do not review the past medical record--if there even is one. They have only a few tools (or medicines). If all you have is a hammer, everything is a nail.
Coincidentally--or perhaps not--my colleague at Partners in Hope was also evaluating a young girl from Mozambique with similar symptoms of intractable fever and body aches. We decided that typhoid fever was the most likely culprit in both cases. The girls each tested negative for HIV infection. A strain of typhoid fever in Malawi and Mozambique carries a high risk of central nervous system involvement, perhaps accounting for the seizures.
Remarkably, Celestina had received no antibiotics over the preceding weeks. Her mother had elected to stay in Malawi for a time but some distance from Partners in Hope. We arranged for daily injections of ceftriaxone, a preferred treatment for severe typhoid fever. Just in case they could not manage to return, I also prescribed pills--problematic since she was vomiting. I did no other tests because our clinic was without power all morning.
Over the next several days Celestina slowly improved. Fever abated.
Why did she have to deteriorate to this pathetic, life-threatening state? For decades in Africa it has been accepted wisdom that fever without a clear source of infection is malaria or typhoid fever until proven otherwise. If you treat for one disease and the patient doesn't get better, then the next step is pretty straightforward: treat for the other one.
Celestina was, as a former colleague in the States used to say, "randomized to the no-treatment arm," a reference to the randomized clinical trial, the gold standard for testing experimental therapies. "Arm" indicates whether you will get the active medicine or nothing (or a sugar pill).
Liz did not mean it that way. She was referring instead to the non-expert clinical care HIV-infected patients received when admitted to the public hospital where we worked. Sick patients went in, and so often it seemed as if no experienced HIV clinician had been consulted.
"Liz," I explained, frustrated, "my patient with Pneumocystis pneumonia was discharged on the wrong dose of Bactrim, and now he is short of breath again."
"Sounds like he was randomized to the no-treatment arm," she replied in a sardonic tone indicating this error was not the first she had seen.
Celestina was randomized to live in Mozambique. Randomized to live in a country only beginning to recover from years of brutal civil war. Randomized to attend a clinic unable to care for her treatable condition. Randomized to a clinician unaware of basic medicine as it has been practiced for decades. Randomized to deep throbbing, to seizures, to fear...
...to the no-treatment arm.
Until, somehow, her mother managed to make it to Partners in Hope. "See," the optimist protests, "She got the care she needed!" What about Paulina? There must be one. And Mary? A common name. And all the other rural Mozambican and Malawian boys and girls whose names we don't know and whose families cannot scare up $100 for the trip and the treatment. For every Celestina, there are a thousand or more others, all randomized to the no-treatment arm.
My former colleague and missionary hero Dr. Rob Congdon, now in South Sudan, ran a Zambian hospital in the 1990s. One of his many activities was to travel to outlying rural clinics near the Zambian-Mozambican border, during the war years in the latter nation. Multitudes would flock over the line for aid, since there was nothing at all available in Mozambique. Of course it was dangerous. How many who came looking for help were soldiers, bearing weapons? Rob's wife Nancy would wait on the porch back at the hospital, scanning the horizon, praying, "Lord, please let my husband come home."
Knowing Rob, he felt compelled to keep going back because he didn't believe any Mozambicans belonged in the no-treatment arm.
After five days of injections, they did not show again. My colleague had last seen her in the hospital ward, receiving her shot on a Sunday. I wondered if she had died, or if her mother had run out of money for the minibus. I just had to hope that the pills we gave her would finish off the infection.
Two weeks later mother and daughter re-appeared. No longer bawling, Celestina, her legs doggedly rigid, could not yet walk. But she did smile, incessantly, strangely. Able to speak only a few garbled words, she accepted the stuffed armadillo with joy. I surmised that the infection had left her with brain damage, and that recovery would be minimal and halting from here on. I referred her to a nearby children's center for physical therapy.
 |
| After treatment |
Her mother was content, the patient now happy. There was no pain or fever or seizures. She was gaining weight, cheeks filling out. Celestina, wrapped tightly in her mother's arms, was blessed to be randomized to the care of a loving family.
Africa has very few doctors. Malawi has fewer than 300 for 14 million people. If I ever leave Africa--permanently, for good, "Can't take it anymore!", throw up my hands and just quit it, "Done my time!"--will that be the equivalent of randomizing people to the no-treatment arm?