I discussed the situation over breakfast in the hospital cafeteria with a colleague who was also involved in global health work.
“Every time . . .” He trailed off wistfully, slowly shaking his head as he looked beyond me at the flurry of hospital staff caffeinating at the coffee machines.
“Every time we tried to buck the system to make something miraculous happen abroad that we couldn’t accomplish in the field . . .” He trailed off again.
“Every time . . . Every time, something terrible happened,” he finally said.
My colleague told me about a young girl who developed failure of one of her heart valves. He and his colleagues knew she would die without a valve replacement surgery, but the surgery couldn’t be done in the country where they worked. Seeing the potential for a big save and trying to avoid a senseless death from a treatable disease, they found a cardiac surgeon abroad willing to do the surgery. But the mechanical valve the surgeon needed to implant required that the young girl be on a blood thinner medication for the rest of her life, which required frequent blood tests to monitor its effects. Somehow my colleague and his group not only got the young girl abroad for surgery but also figured out how to provide the medication and monitoring over the long term. The patient had successful heart surgery and was celebrated as a huge triumph.
Then she died suddenly. The cause was a fatal brain hemorrhage, a complication of the blood thinning medication my colleague had worked so hard to obtain.
“We felt terrible.” He looked down at his steaming coffee. Then he looked up at me. “It was the ‘right thing to do,’ you know?” he said, making quotes in the air with his hands. “And we thought we had crossed every t and dotted every i, and then . . .” He looked down again and swallowed hard. “Somehow it feels like when you try to intervene against the natural course of things . . . well . . . maybe you can’t. We stopped trying to do this sort of thing to maintain our focus on building local capacity.”
Janel’s surgery would carry enormous risks: worsening disability, coma, even death. As a neurologist, I regularly discussed the potential risks and benefits of surgery and other treatments with my patients. From conversations that had gone better or worse—for the patients or for me—I had developed a sort of script that seemed to work most of the time. “While some patients in your situation say they would take any risk for the chance of improvement,” I would say, “other patients prefer not to be so aggressive, to accept the situation and let nature take its course.” Then I would pause. If there was no response, no identification with one of these extremes, I would continue, “But most patients fall somewhere in between. Where are you in this decision process at the moment, and what questions can I answer?”
With patients in Boston, I felt we at least shared a somewhat common frame of reference. People had friends or family who’d had surgery, maybe even brain surgery. They’d heard of a coma on TV or in movies, and had perhaps even seen it in their own loved ones. They came to these discussions with some experience and background—and therefore some intuition—about how much fear and hope to have.
But how would this look to Janel, a twenty-three-year-old in rural Haiti? In the remote, destitute region where he lived, nobody would have gotten neurosurgery, nobody would have had a television to watch a show in which someone got brain surgery or lived for a prolonged period in a coma. How would he balance these abstract risks against an extraordinary faith in doktè blan? “White doctors” is the literal translation of doktè blan, though the word blan in Haitian Creole is used to describe all foreigners whether or not their skin is white. Many doktè blan come to Haiti on mission trips each year to offer surgeries not otherwise possible there—interventions that can appear miraculous to local communities. Not only would we be speaking as doktè blan; we would be offering surgery lòt bò a—on “the other side,” as the US is often referred to in Creole—widely seen as a land of medical miracles.
We could ask Martineau, Janel’s doctor, to explain to him that even in the best-case scenario, surgery might only prevent him from getting worse rather than make him better, and that there would be a significant risk of surgery making things worse. But would these subtleties of risk and benefit resonate, or would Janel be biased by belief in a miracle when Martineau mentioned doktè blan and lòt bò a?
To provide Martineau with the best information for his discussion with Janel, I wrote to Ian again to get his sense of the surgery’s risks:
Do you think it is reasonable to say that based on the CT scan, aside from the risks inherent in any major neurosurgical procedure, that this tumor appears potentially highly amenable to surgical therapy, although of course the prognosis beyond this will depend on what type of tumor it turns out to be? My colleagues in Haiti will have to present all of this carefully to the patient so he and his family can balance the risks and benefits of leaving his country for a major surgery.
A man of few words, Ian replied:
I agree with your comments. MRI will be a bit more helpful in saying that more forcefully.
An MRI provides a much more detailed view of brain anatomy and pathology than a CT scan. If we could get free care for Janel in Boston, he would have an MRI after he arrived, both to give us a better understanding of what type of tumor it may be and for Ian to plan his surgical approach. But what if we brought Janel to Boston based only on the results of the CT scan and the MRI revealed that the tumor was invading the brain rather than just pushing against it, making it inoperable? This outcome not only would be deeply disappointing to Janel but also could jeopardize future attempts to bring patients from Haiti to Boston. If we went through all of the trouble to get Janel to Boston only to send him home after an MRI, it would look like we didn’t really know what we were doing.
An MRI center had recently opened in Haiti, and for about seven hundred dollars we could get Janel an MRI. Although this was necessary before making any further decisions, I worried that even the MRI could provide false hope for him and his family since an expensive and high-tech test was being offered for free. For a few weeks I’d been involved in email chains with Michelle, Martineau, Ian, and others about whether getting Janel to the US was even possible, and I felt bad that we hadn’t yet brought the patient and his family into the discussion. But we wanted to be able to provide as much information as possible to help them make an informed decision.
I called Martineau.
“It is a very complicated situation, isn’t it?” Martineau asked, cutting right to the heart of the matter after we exchanged greetings.
We went over everything we had been discussing by email. The only treatment for this enormous tumor would be surgery, but the surgery wasn’t possible in Haiti. It would have to be performed abroad, and it was a high-risk surgery. There was even a risk of his patient dying in Boston, far away from his home and family. I asked Martineau if he could make sure that Janel and his family understood these risks before we proceeded any further toward trying to get him to the US. I told Martineau about my concern that it could be hard for Janel and his family to fully grasp these risks because of any blind faith they might have in a free surgery performed in the US.
“I don’t mean to imply that they wouldn’t understand,” I said. “I just worry that . . . Well, as you said, it’s complicated.”