Saturday, January 22, 2011

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.

Tuesday, January 11, 2011

The road to hell and the privilege of volunteering

An odd little encounter in our rural Indonesian nonprofit clinic yesterday made me think more about the consequences of volunteering.

In the waiting room, Fitri, one of our bilingual staff members, came up to me looking puzzled. Standing beside her was a young man with Asian features and a friendly, eager expression. He was strapped beneath a huge backpack with a rain cover. While curious patients looked on, he began to speak to me in poor English. I made out that he had met me and heard about our organization. He had decided to come here and offer his services as a volunteer, too.

I was as puzzled as Fitri was. I certainly didn't remember meeting him and we weren't expecting any new volunteers. I asked him if he could explain himself to Fitri in Bahasa (that is, bahasa Indonesia, the national language) rather than in English. "Bahasa?" he said, not seeming to know what I was talking about--which was astonishing, considering we were deep in the heart of Indonesia where Bahasa is the lingua franca. "Chinese?" I suggested, thinking of a doctor we have who knows that language. Finally it emerged that he was Korean. Alas, none of us could speak that to him.

He'd confused me with another volunteer. She and her husband, who soon emerged from an examining room and helped us to clear things up, had indeed met this man two days ago as they waited in the harbor for the boat to our town. Perhaps noticing their Caucasian faces among all the Asian ones, he had walked up to them and asked them where they were going. They explained that they were volunteers with this NGO, whereupon the young man announced that he would come along and volunteer, too.

"Well, you have to learn more about the organization first," John said, taken aback. He told the young man the NGO's name and its web address, and the man wrote them down before abruptly walking off. It had been that short an interaction. Forty-eight hours later, here he was. He had taken a long boat ride to this remote town far off the tourist track, then stumped around town with his backpack asking where the clinic was. Now that he'd arrived, he was ready to roll up his sleeves and get to work. "I do anything, doesn't matter," he averred.

It seemed this young man had just finished earning a mathematics degree in Korea and was now on a sort of yearlong walkabout before joining the navy. In Korea, he explained, you could just offer your services as a volunteer and they would take you on the spot. At least, he had done so once at a tutoring organization there, where he had taught math to children.

It fell to John to gently tell the young man that we couldn't use his services at this time. It's not completely unreasonable to assume that a willingness to work without pay will open the door of any struggling NGO (and aren't they all struggling?). But that's not how it works. As with most organizations that do anything more complicated than, say, clearing invasive brush in public parks, volunteers here go through an application process. They have to agree to certain conditions, sign liability waivers, perform specific duties for which they have the skills, and learn some of the language and customs first so they can responsibly represent the organization. Many applicants are turned away, and just because this young man had come thousands of miles to our door did not put him at the head of that line. As if he were a jar of unlabeled medication, no one knew quite what to do with him--he spoke neither bahasa Indonesia nor, really, enough English to talk to bilingual Indonesians. And as if he were a drug none of us had ever prescribed, we didn't know whether he was prepared to respect local customs or if he'd make a terrible cultural mistake, hurting the organization.

He was crestfallen, but seemed to understand as John explained these things to him and suggested that he inquire at the national park office. He added some kindly advice about researching volunteer opportunities in the future. (I might add that a quick study of the local language--starting with what it's called--never goes amiss!)

In the nicest possible way, this young man's mistake reminded me of the concept in disaster medicine of the "second disaster"--the wave of well-meaning but uncoordinated volunteers and supplies that materialize at the scene of earthquakes, tornadoes, and so on. Though that seems like a good thing, in fact the transaction costs of organizing that energy and stuff are high, and too much unorganized help literally creates a second disaster. On 9/11, so many volunteer fire trucks rushed to Lower Manhattan that they blocked the paths of the fire trucks whose job it actually was to get to the scene. At a Haitian field hospital where I worked last spring, there were six-foot stacks of boxes of donated clothes, all of it lovingly sent by various American groups, none of which any of the medical staff had time to sort out and distribute, and many of which (I confirmed this by poking through them) were worn out, grubby, or otherwise inappropriate. And drug companies are notorious for dumping inappropriate supplies on disaster scenes, where workers then have to make heads and tails of them, starting with figuring out what they are and when they expire. Fiascoes have taken place on many occasions, including the 1988 Armenian earthquake, the 2005 tsunami in Aceh, and Bosnia and Herzegovina in the mid-1990s, when, according to this grim WHO recitation of such failures, 17,000 tons of useless drugs had to be disposed of at a cost of $34 million. Patients have been harmed by drugs whose use was unclear. Even assuming the drug companies meant well (not necessarily a safe assumption!), this is harmful by any measure.

The point is that, the giving instinct notwithstanding, to give can sometimes be a privilege, not a right. You have to give responsibly. And those of us already volunteering are not exempt from self-examination. We can't take it for granted that our good intentions achieve good results--a topic for another day.

As for the young man, we told him about a couple of places to stay the night and suggested a swim at the beach later that evening. He asked us to call him a taxi, but we had to explain that there are none in this town, so he started off on foot. We watched him as he trudged with his backpack down the hot and sunny road. I hope he finds the right place to give of himself.

Sunday, January 9, 2011

Follow-up: Child with status epilepticus, posturing--and recovery

I posted yesterday about a 3-year-old girl whom we saw several weeks ago whose parents brought her to the clinic after 6 continuous hours of status epilepticus. Soon after our physicians stopped the seizure, she began posturing, a sign of damage deep inside the brain. While we treated her for malaria, viral encephalitis, and bacterial meningoencephalitis (we didn't know which of these it might have been, but we dared not do a spinal tap to check--that can be dangerous if one suspects increased pressure in the brain), she remained at our clinic for three days, comatose, unresponsive except for posturing in response to pain. Then our physicians advised her parents to take her to another hospital that has higher capabilities than our clinic. But we doubted she would recover.

We were wrong. And it's not for the first time--I must learn to be more measured in my doom-and-gloom predictions about sick kids in our clinic. Half a day after I posted yesterday's sad entry, her mother walked in, child in arms, very much awake. She was so cute and lively that I didn't recognize her, but the other doctors and I were shocked when we realized who it was.

Apparently the parents chose not to go to the other hospital and took her home instead. That evening she began to regain consciousness. And now, several weeks later, having received only three days' worth of treatment, she is here with us, wiggling in her mother's arms, kicking at us playfully, and filling the waiting room with her chatter. She doesn't appear to be deaf. According to her mother, she's back to normal. If there is residual damage, it isn't obvious.

I don't know what to say. I thought she was done for. But it's nice to be reminded--especially as an ER doc who often sees people at their sickest--that even the sickest of the sick can recover.

By the way: I asked the patient's mother why they came to the clinic 6 hours after the seizures started, and, for the record, I was incorrect to speculate in yesterday's blog that they delayed because they didn't know they were dealing with an emergency. They knew it, all right. They spent those crucial hours raising the money and securing the transportation to get to our clinic--which is two hours from their home. We sent them home with a dose of rectal diazepam in case it should happen again--in such a remote area, the benefits of self-treatment of such a dangerous condition seemed to us to greatly outweigh the risk.

Tough life out here.

3-year-old girl with seizures

Some weeks ago in our rural Indonesian clinic, we saw a small girl of about three in the late afternoon. Her concerned parents brought her in because she was having a seizure during a fever. It was a quiet little seizure, and perhaps it didn't much worry them at first. She didn't jerk or turn blue or flail dramatically. She just lay limp and insensible, left hand twitching and eyes gazing to the left.

How long has she been having this seizure? we asked them.

Since morning, came the answer. Oh, no.

A seizure that lasts longer than a few minutes--the definition varies from 5 to 30 minutes in some texts--is called status epilepticus, and it's a different ballgame from the more benign self-limited fever-related seizures that little kids sometimes get. Seizing for longer than a few minutes can cause brain damage.

Our physicians stopped the seizure quickly with rectal diazepam. But she didn't recover. Instead she lay comatose, barely responding to painful stimuli like a firm rubbing of her sternum. Basic tests found no obvious explanations of her seizure other than the fever, and no obvious cause of the fever. Treatment for the most likely bugs was begun, but within minutes of her seizure stopping, she began posturing--a sign of grave brain damage. Having reached the limit of the clinic's capacities, the physicians decided to transfer her to a nearby hospital. Her prognosis for resuming a normal childhood is grim.

Though it's a completely different situation, this tragedy reminded me of Anne Fadiman's superb book The Spirit Catches You And You Fall Down. It's about of a clash of cultures--Laotian Hmong and Western medical--and how a failure of communication between a pair of well-meaning immigrant parents and a group of equally well-meaning doctors led to a little girl's suffering a devastating and seemingly preventable seizure. It's brilliantly researched and presented. I read this book before beginning medical school and it's one of the few books in my adult life that I've reread many times, because it fascinates me that cultural differences can lead to so absolute a failure to communicate.

In our case, the failure is not one of person-to-person communication; it's hard to pinpoint and blame is hard to affix. The tragedy here is in part from her parents not bringing her in sooner because they didn't realize how dangerous an extended seizure can be. Or so I speculate, across a language barrier--there may also be factors like lack of access to transportation, concerns about expense, not realizing there was a clinic they could go to, and so on. But if I'm right and it was a simple lack of alarm on their part, then this episode underscores how much medicine a layperson in a developed nation can learn simply by having access to the media. TV dramas, radio programs, newspaper articles, storybooks, all of these over a lifetime teach people the seemingly obvious fact that things like seizures or sudden paralysis or terrible chest pain need to go to the hospital right away. We aren't born knowing these things, and in areas where this knowledge isn't floating around, maybe people don't know it. Maybe her parents didn't know it. And what looked to them like a quiet little seizure turned out to be seismic.

Saturday, January 8, 2011

Review: Fabulous little EKG machine

Greetings, faithful readers, from the aftermath of a long Internet outage. I want to review a nifty portable EKG machine that our clinic recently received from a generous donor.

Sold on eBay by a Chinese company called Medeshop for $239.00 plus $29.00 shipping (American dollars), this electrocardiogram machine fits in one's palm and weighs 800 grams. It arrived promptly (to a US address, after which it was hand-carried to Indonesia) and came with detailed instructions in somewhat fractured but quite understandable English. And I couldn't be more pleased with it.

For one thing, it's a snap to use. We borrowed one of our male nurses and had it on him within minutes, using its handy suction-cup and clamp attachments. After five or ten minutes' spent studying the instructions, we'd mastered all the buttons and options, each of which was close to intuitive.

For another thing, it's all but self-contained. For one thing, the suction cups and clamps mean no disposable stickers--not only are those stickers expensive and hard to obtain in remote areas, but they also generate trash. And here in rural Indonesia as everywhere in the world, trash is a big problem. The only thing this machine does need is paper for printouts--unless you decide to hook it up to your PC and view the EKGs digitally. Our clinic is Mac-based and we're not able to choose this option, but one could conceivably go completely paperless and trashless with this EKG. In a low-resource environment, all things being equal, equipment that doesn't require disposable parts and that behaves in a near self-sufficient matter should be given greater weight in purchase decisions than equipment that relies on parts that must be continually bought and replenished. Even if one has a steady supply of parts, they can go missing or be hard to store or keep track of in a small clinic.

Finally, one can operate without power--its battery lasts at least half an hour after being fully charged. That is absolutely key in an environment where the power often goes out. And you can opt for backlighting.

This machine allows the user to toggle through each lead on a standard 12-lead EKG; one can then opt to print it out. The printout isn't like a full-sized machine that prints a series of heartbeats from the simultaneous point of view of each of the leads--on this little machine, each lead is measured for three seconds sequentially. So you have to bear in mind that you're not comparing individual heartbeats across leads.

It offers various paper speeds and filters, too. I'm delighted with this thing and hope our clinic will eventually be able to obtain a few more. But if we never do, it's so light and portable that we can carry it from bedside to bedside and use it as we would any other portable equipment.

Verdict: great product.