Refugee Medicine

The medical care of refugees, which often (though not always) takes place in a low-resource setting,
has its own fellowship at Massachusetts General Hospital. Named for Dr. Thomas Durant, who won the Humanitarian Award from the United Nations in 1995, the Durant Fellowship in Refugee Medicine promises its fellows a "full and rewarding hands-on experience in the field," caring for victims of "war, disease, drought, poverty, or politics."

Please note the honesty in the brochure's wording. People who help disaster victims do it in part because it feels so rewarding to do so. But that fact should not detract from hard questions about whether what they are doing is right in the great scheme of things, and I don't see evidence in the Durant Fellowship's online materials that it teaches participants to ask those questions. (To be fair, I haven't interviewed Durant Fellowship leaders to learn more about its aims, so consider the following words to apply to humanitarian efforts in general rather than to that particular program.)

I am lucky enough to know firsthand that it feels great to help disaster victims. Last year I went off to Haiti a few months after the earthquake to work in a field hospital, and there I was surrounded by fellow volunteers who were intoxicated by the goodness of what we were all doing. It was a tremendously good experience, and we bonded over it like kids at summer camp.

Yet there were definite downsides to what we were doing. I recall diagnosing a woman with diabetes and giving her a supply of antihyperglycemic medication, only to realize that when it ran out she might not be able to access any more. Nor did I have anyone to refer her to for long-term care. There were homeless children at the hospital who bonded week after week with new volunteers, only to dissolve in tears when it inevitably came time for the volunteers to go home.* And we were doing absolutely nothing to overcome the poverty, bad leadership, and environmental devastation that made Haitians so vulnerable to disaster in the first place. Perhaps that isn't our job--but the thought should humble us a little.

I recently read Linda Polman's book The Crisis Caravan, one of a number of books that brings a critical eye to bear on the humanitarian enterprise and argues that under some circumstances humanitarian aid can actually do more harm than good. Dambisa Moyo, a World Bank economist and native of Zambia, also criticizes the effects of foreign aid on Africa. There are a number of other books in the same genre that I look forward to reading. I don't know enough about most humanitarian aid organizations to know what kind of response they have made to these criticisms, if any. But I do know that people feel a certain romance to racing off to help the poor victims, a sense (reinforced by others around them) that they are really good people for coming all this way to help--and that that emotion can be misleading or even dangerous if it remains unexamined.

Anyone who wants an international disaster-aid experience should skeptically evaluate their proposed actions, and refrain from assuming that because they are headed off to help the sick and injured, they are heroes and immune from criticism. Too often, we doctors believe we're unambiguous warriors for good--what parent doesn't approve when their kid wants to go to medical school? who doesn't look with awe upon the intrepid Doctors Without Borders?--but I'm not as sure about that as I once was. For instance, if, as Polman argues, humanitarians are sometimes played off against one another by strongmen, then their presence in a war zone might perpetuate a tyranny rather than ameliorating its effects. Are doctors** thus turned into tools in the hands of leaders who use amputation as a war strategy? Does the organization they propose to work with have thoughtful leaders who are prepared to recognize and react to such a situation? There are other hard questions. Does their organization mishandle funds, elbow out more effective groups, or duplicate the work of other organizations? Does it engage in self-evaluation to see if its work is effective? Does it make mistakes like failing to provide for follow-up care after plastic surgery? Do the doctors help to train locals (capacity-building) so that expertise remains in place once they leave? And how, if at all, will their efforts prevent future disasters?

I would never argue that people with the power to help the dispossessed should refrain from doing so. Indeed, justice for everyone is one of humanity's highest goals, and it gives me hope for our species that we feel good when we pursue justice for others. But we must question our methods. We need to weigh the evidence about whether what we're doing will achieve the goal of well-being for all, and not reflexively accord too much weight to the rush we all get when we help.



* One, I'm happy to report, was adopted by a volunteer, and now lives happily with his new family in Ohio.
** I use the word "doctors" as shorthand for all professionals, including physical therapists, nurses, social workers, logisticians, architects, and anyone else who chooses to work or volunteer on behalf of disaster victims.

Doorway diagnosis, but to what end?

Our clinic recently saw an 18-year-old man who had had seizures for most of his life. It seems that they had been well-controlled on a three-times-a-day seizure medication, but his mother had recently tapered it off, and his seizures resumed and did not stop even when she restarted it. One of my Indonesian physician colleagues asked me to join him in the examining room.

The patient had a peculiar facial feature: crowded, shiny papules scattered across his nose and cheeks, as well as some larger, fleshier patches on his forehead. There was another on his lower back. And there was a pale, depigmented patch of skin on his belly. All of these had been there since early childhood.

From this telltale skin features plus his seizure history, it was all but certain that he had a genetic disease called tuberous sclerosis. Most cases arise spontaneously, and indeed there was none in his family, but because of dominant inheritance, each of the patient's own future children will have a 50% chance of inheriting it.

We explained this to him and his mother. She told us she had taken him to specialists in the city since he was little and had never gotten any kind of diagnosis, only a great many expensive and unhelpful tests and therapies. She said the family had sold everything it owned to pay for these trips and consultations.

Though it was gratifying to make that interesting diagnosis in this low-resource setting, the intellectual victory was Pyrrhic. The patient had been hoping for a cure for his seizures and skin problems, and there is no cure for tuberous sclerosis. Still, there's a lot that can be done. If he were lucky enough to be born in the developed world and possessed of good health insurance--or if he were the son of someone very, very rich here--he could have the lesions lasered off, which our textbooks informed us can give excellent cosmetic results. He could consult an experienced pediatric neurosurgeon about possibly removing the growths in his brain which are probably causing his seizures. He could see an eye specialist as well as receive the special education that many TS patients need. He could get a session of genetic counseling, too. With reliable Internet access, he could meet other TS patients online and get a little psychological support.

He has access to none of the above. In fact, he dropped out of school as a child because of his seizures. He is unemployed. His mother told us very frankly that she doesn't think any woman would marry him.  The patient looked miserable to hear all this.

One of my American physician colleagues angrily pointed out to me later that it wouldn't be all that big a deal to at least get the boy's facial lesions lasered off--that alone would make a tremendous difference in his life. That is, it wouldn't be a very big deal if he were in a developed country that allowed for such things.  As it is, though, what we had to offer were adjustments to his seizure medications and a suggestion to see a neurosurgeon who is hundreds of thousands of rupiahs' worth of travel from here.

I'm left wondering what good this diagnosis will be to him and his family. Is there ever a time when one might as well not know?