“Well, he spits them out,” she said shaking her head and making an exasperated clicking sound. “I didn’t want to give him extra because I have no idea how much he swallows. I don’t want to overdose him.”
We switched him to a liquid form of the medicine—the one used for children—and sent him back home with Hermide. If she was unhappy about taking him home, she didn’t say anything. But we were also afraid to ask. Where else would he go?
Janel’s recent setbacks had put chemotherapy on hold until he was well enough to tolerate it. If anyone else on our team aside from me was wondering if he would ever be well enough, nobody mentioned it. But a few days later, Janel’s oncologist broached the topic:
I just wanted to revisit the idea of treating Janel. I still remain committed to his care, but I want to make sure we are doing right by him. I have serious concerns about further treatment for him, especially considering his poor functional status (Hermide per report can’t get him to do anything). Chemotherapy would definitely drop his blood counts and set him up for further medical complications—and make him super sick. His course has been tenuous to date and his recovery from any event is delayed. His type of tumor is rare and we do not even know if adjuvant chemotherapy is necessary or not. There is evidence of residual disease on last MRI, although treatment to date may have been sufficient to stabilize his disease for now. I recommend no further chemotherapy for now.
I will meet with Janel again before moving forward with chemotherapy but he has never been able to participate fully in a conversation with me and I have no confidence that he is giving me fully informed consent. I have always relied on Hermide and she thus far has wanted to remain aggressive.
I replied:
We had been wondering about the best way forward as well given his current status, and also felt that it is hard to know whether it would be appropriate to consider further treatment. Our hope had been that he would improve to his postsurgical baseline, which he appeared to be doing in the hospital, but it sounds as though overall he spends more time at his worst than at his best. I imagine if asked directly, his family and Hermide would want to do everything possible as you said, but I agree that it is not clear that this is what is best for him given how much suffering he would incur due to treatment, and for unclear gain. Presuming everyone agrees, I would lean against treating him at this stage and let him be comfortable with his family in Haiti.
Anne and Michelle agreed. So did Hermide. If our goal was to reduce Janel’s suffering, it was hard to imagine keeping him in the US for six more months, sick and alone, at risk for complications of aggressive treatment with unknown benefit.
I had been reluctant to give up, but was it because of all he’d been through or because of all we’d been through? Probably some of both. Though I had no way of communicating with Janel, I suspected he’d be happier back in Haiti. Anne called Wilner in Haiti and explained that Janel was too sick to get any further treatment. We began planning Janel’s return home.
Since Janel had made so much progress in rehab at HUM during his last visit, we were hoping he could return there to try to regain some of the ground he had lost. He was worse now than when he had previously left Boston for rehab in Haiti, and we weren’t even sure he could really participate in physical therapy, but it seemed worth a try.
The HUM rehab team was happy to work with him, but they wanted to know where he would go afterward. Martineau felt that Janel’s mother’s house was far too remote to be safe for Janel. If he had a seizure or any other medical complication, it would be nearly impossible to get him to a hospital—let alone a road to a hospital—quickly enough. Martineau was also concerned that Janel’s mom would not be able to take care of Janel on her own, physically or financially.
Martineau asked Wilner if Janel could go back to staying with him, as he had for the year before Janel went to Boston. Unfortunately, Wilner told Martineau he no longer had space to take care of Janel.
We were in a difficult spot. We wanted to get Janel home, but there was no safe place for Janel to go home to.
“I guess we could cure his brain tumor, but we can’t cure his poverty,” I lamented to Michelle when we tried to come up with a plan.
“Right?!” She smiled sadly. “We’re going to have to start thinking about relocating him and his mom to Mirebalais.”
“We can do that?” I asked.
“I don’t think we have much choice,” she replied.
As we were thinking through all of this, an article I’d written about Janel many months earlier came out in a medical journal. It was a brief two-page essay in which I discussed some of the struggles we’d wrestled with trying to get Janel the care he needed, bridging the worlds of poverty-stricken rural Haiti and a high-tech academic hospital in Boston.
I wrote about the challenges we had faced presenting both the potential benefits and the potential risks of surgery in a place where hope is scarce and faith in medical miracles is strong. I reflected on how my colleagues in Haiti had helped me understand that I was misapplying my patient-centered US medical way of thinking in a place where many patients wanted doctors to decide what was right for them, not leave them with complex choices to decide on their own. I explored the objections we had encountered when we proposed pouring extensive resources into the care of a single individual and tried to tear them down in Paul Farmer–inspired arguments based on the first principles of doctoring:
In resource-limited settings, healthy debates center around hackneyed (but not entirely false) stereotypes that physicians focus on helping individual patients without always considering the larger system, while public health practitioners focus on the system without always accounting for how it will serve individual patients . . . In a case like this, traditional concepts of public health break down. A primary goal of global health is building capacity to raise the basic level of care and access to it. But in so doing, what happens to patients whose diagnoses are discovered by the new system, the new capacity, and the new access to it? Is it “sustainable” to turn a blind eye and focus on simpler problems first? When clinicians are faced with patients like this one, the theoretical principles of “cost-effectiveness” and “sustainability” seem tenuous alongside the simple tenets of the Hippocratic oath.
Reading my words months later, they sounded naïve. How many times had I railed to friends and colleagues about those who criticized our caring for Janel as not being cost-effective or sustainable? But now I saw that I was equally worthy of critique. Had I really thought through the whole trajectory of what it meant to care for Janel, or had I just seen the medical problem and rushed in to try to fix it without thinking through the true cost of intervening in someone’s health—and life—in this way? Had I really understood all that would need to be done to make this truly sustainable for Janel—a house, food, a source of income for him and his mom?
After the article’s previous paragraph, one line followed:
On the other hand, what does it mean to “Do no harm” in a complex context that is not one’s own place of practice?
In the article, I asked the question as a transition to discussing the challenges we faced explaining risk and benefit in a different culture. But now the question of whether we had done more harm than good loomed large. Had Janel’s life been saved only to leave him in a state of disability so profound that he couldn’t survive at home without completely restructuring his environment? And if his environment had to be changed so much to accommodate him—a new house in a new community—would he truly be going home? Would his mother want to be moved to a place where she knew nobody and had no social support? Would the new community accept her and Janel, and how would they react if they learned PIH was paying her bills and not theirs?