By the time I met him, Ganizani had been itching for 6 years.  Not an occasional minor irritation, but a full body, incessant, un-satisfiable deep scratching.  Asleep, awake, it didn't matter.  A bumpy rash, covering him virtually head to toe, was resistant to all creams and treatments (see picture).

Our matronly nurse, Anna, brought me to see him one day.  We really went out to visit the HIV-infected, but Anna knew of Ganizani's plight.  (He has repeatedly tested negative for the HIV virus.)  I arranged for him to come to the clinic, and we were ultimately able to send a biopsy specimen back to UCLA medical school.

The pathologist found no infection, just an extreme allergy of the skin.  This reaction had implications for his entire body, which was in a state of inflamed agitation, spitting out so many invasive immune cells that his organs were threatened.

Ganizani had never really received a good course of steroid pills.  I decided to "hit him hard," to see if the rash would respond.  And it did.  After a week, Ganizani considered me nothing less than a miracle worker.  The trick now was to reduce the steroids and try another medicine (called methotrexate) to control the inflammation.  High doses of steroids are problematic over the long term.

In the course of making these changes, severe pneumonia developed.  The steroids work by weakening the immune response, not just of his body against his skin but against bacterial invaders as well.  Requiring an oxygen machine, Ganizani was one of our very first admissions to the hospital ward three years ago.  He recovered, and we continued to reduce the steroid dose.  The methotrexate and creams helped maintain remission of the rash.

Ganizani continued to do well, seeing me in the clinic every few months.  He presented a large fish as a gift of thanks.  Before I left Malawi in June an adequate supply of drugs was arranged, and he was doing fine.  We even stopped the steroid pills while continuing the methotrexate.

But three months later, abdominal pain and fever developed.  An ultrasound suggested an abscess--a walled-off cavity full of infection--inside the liver.  Antibiotics were tried without relief.  I then returned to Malawi and, concerned, referred him to another mission hospital for surgery.  The doctor there did not feel comfortable with the images he saw and recommended continued antibiotics.  Higher doses and different medicines were tried.

And he improved.  Two weeks later, the fever resolved and the pain had almost disappeared.  We could not find an abscess by ultrasound.  Even the rash had not come back after we stopped all medications as a cautionary measure.

Such complications of treating autoimmune disease are common and are to be expected.  Neither I nor the other doctors did anything clinically wrong.

So why then was I bothered by the episode?

The realization had hit me that, despite now two severe infections, I had never really sat down with Ganizani to explain his therapy, the risks and benefits.  Rather, I had merely assumed that what I was doing for him was the right thing, and that's what he wanted.

Partly this oversight was the result of a language and cultural barrier.  Although I conduct most of the visits with him in Chichewa myself, I am far from fluent.  But was that the only reason for my failure to communicate the risks?

The immune cells circulating in his body three years ago would, if left untreated, infiltrate his heart, lung and kidneys, very possibly leading to his death.  It was not just a matter of inconvenient itching.

Some say that significant, intractable itching is even worse than severe chronic pain, which at least can be alleviated by narcotics and other medications.  Itching sometimes has no balm whatsoever.  I truly believed I had placed myself in his position:  Itching to the point of torture, plus the chance of organ failure, versus the theoretical future risk of a treatable infection?  Why, the choice was easy!  So I made it for him.

After he recovered, I met with Ganizani--along with a nurse to help translate clearly--and explained that his liver infection might have been the result of his "little yellow pills," or mankhwala a chikasu--the methotrexate.  Without the mankhwala a chikasu the rash might come back, with some risk to the rest of his body.  I wanted to re-start the medicines in a few weeks.  Was that OK?

Chabwino.  Fine.         

My angst about a failure to inform that--in America--would have been rightly criticized, was brushed off by my patient as nothing at all.  Perhaps he remembers how horrible it was to itch uncontrollably day-in-day-out.  More likely, he was expressing the usual hierarchical deference to, and trust in, authority common within African medical encounters--and, until more recently, common in Western clinics as well.

Primum non nocere.  First, do no harm.  A tired, unhelpful phrase recycled throughout medical school and on hospital rounds.  The uncomfortable fact is that much of what we do in caring for the sick and the complicated patient involves great risks.  To refuse to offer or recommend treatment which would relieve Ganizani's daily excruciating torment--in the name of doing no harm whatsoever, to avoid any chance of a potential side effect--would have been the wrong medical decision.

But at least I should have told him what he was in for.