The article closed:
As our patient smilingly takes his first steps after a long recovery from two complex neurosurgeries and begins a treatment plan devised by a tumor board of world experts, we celebrate one small victory against inequity, against poverty, and against the odds. Yet we cannot lose sight of how many patients remain undiagnosed and untreated simply due to lack of access to basic—let alone specialized—health care. We brought this patient to modern medicine, but we must work tirelessly to bring modern medicine to all patients.
I remembered watching the cell phone video Michelle had made of the moment Janel smilingly took his first steps, and celebrating the milestone with Martineau as we watched it in Haiti. But by the time the article came out, Janel was bedbound and mute. It was unclear if we could safely get him home to Haiti. The article felt insincere. Janel was no longer smiling, no longer walking, and his uncertain future hardly felt like a victory. I believed in the concluding sentiment, but I wondered if I really had the knowledge, skills, or experience to carry it out effectively. Who was I to swoop in and try to do what I thought was the right thing if I didn’t really know the right way to do it? Was there even a right way?
Despite feeling uncomfortable that the article had inadvertently sugarcoated the story since the situation had changed so much since I had written it, I decided I should send it to all those who had helped. I emailed it to my colleagues with both a thanks and an apology:
I wanted to share with you this article I wrote about Janel that came out today. Although the paper was submitted a long time ago and his subsequent progress has not quite continued on the same high note on which the end of his story is told here, hopefully this article can raise the awareness and support necessary to help patients like Janel in Haiti and elsewhere much earlier in their disease course in the future.
I received some solace in a reply from Père Eddy, the priest and psychologist who runs the HUM mental health team:
Whatever happens after, Janel will remain an icon of hope for the multitude of the vulnerable people over the world. Our hands can touch theirs and the human chain will never break!
His moving words reminded me of the advice I had received from another colleague in Haiti when I had agonized over the potential unintended negative consequences if we tried to care for Janel and something went wrong. She had suggested I also consider the potential unintended positive consequences of trying to help a patient in a place where many die of treatable diseases or become progressively disabled with no hope for recovery simply due to lack of access to healthcare. If the patient does well, she had said, it could give hope to his entire community. Even if he doesn’t do well—which would certainly happen eventually if he stayed in Haiti with no care—the solidarity demonstrated by trying to help him could still have a positive impact, giving hope where hope is hard to come by.
I was beginning to realize that maybe this was just how it feels to do this work. Proceed on principle, struggle to a solution, address obstacles as they arise. Even knowing what I knew at that point, I couldn’t imagine having simply left Janel to suffer because of unforeseeable or even foreseeable challenges. If we frame problems in terms of their constraints rather than their possibilities, prioritizing risk avoidance above all else, we are less motivated to find solutions. In Janel’s case, we would have given up at the first accusation that trying to care for him was too costly, too impractical, and had too many potential negative outcomes.
Talking with one of my colleagues, I expressed how bad I felt about the way things had turned out for Janel and how I struggled with the feeling that we’d only made things worse by intervening.
“You had to try,” she responded compassionately but firmly. “We do this all the time in medicine—accept the risks hoping for the benefits. Sometimes we succeed, but sometimes the disease wins. You couldn’t just give up without trying, and the patient and his family so very much wanted you to try. You guys did so much for him.”
In spite of all of the challenges with Janel, I was already beginning the process of advocating for the three patients with brain tumors I had met on my last trip to Haiti to come to Brigham. But what lessons should I take from Janel’s case as we tried again with these new patients?
I wasn’t sure.
* * *
Janel ended up back in the hospital at Brigham. Hermide had come to wake him up and found his bed empty. Janel was on the floor next to it. He had urinated on himself and was unresponsive. We presumed he’d had an unwitnessed seizure and that Hermide had found him in the confused state that often follows a seizure. But when he arrived at Brigham and we checked the blood level of his anti-seizure medication, it was actually elevated far above the therapeutic range. The medication level had become so high that he’d suffered toxicity from it and fallen unconscious. After he was in the hospital for a few days off the medication, the drug level fell to the appropriate range again, and he woke up.
One of our epilepsy specialist colleagues told us that the liquid form of the medication that we’d given him since he was spitting out the pills could sometimes get concentrated at the bottom of the container, leading to toxic levels of the medicine. We switched him back to the pill form (the liquid wouldn’t be available in Haiti anyway) and sent him back to Hermide’s with a plan for some follow-up appointments and repeat labs in the coming weeks.
Janel languished at Hermide’s. He slept twenty hours a day. He refused to go from his bed into a chair. He ate little and sometimes fell asleep while eating. He began losing weight. In medical terminology, he developed what we call “failure to thrive.” The term always seemed to me to be an odd attempt to spin a tragic condition positively, since patients labeled with “failure to thrive” were so far from anything that could be considered thriving. Janel was not only failing to “thrive” but failing to perform even basic functions beyond sleeping.
We told the rehab team at HUM that PIH was working on housing but we couldn’t wait for it to be in place before Janel’s return to Haiti to begin rehab, and they agreed to take him.
By the time Janel had completed his follow-up appointments and a bed was ready on the rehab ward at HUM, it was mid-December. Hermide offered to travel back to Haiti with him so she could stay there for Christmas. Nearly one year after Janel had first arrived in Boston, he was finally going back to Haiti.
I wondered what we had achieved for him with two trips to Boston, five surgeries, and six weeks of chemotherapy and radiation. He no longer had a brain tumor, but now he had a shunt and a seizure disorder and had presumably suffered some degree of psychological distress. There was no clear plan for where he would live when he got home.
So much for walking out of the hospital, so much for a big save.
13
I think we should start a neurology residency here,” said Dr. Kerling Israel, the director of medical education for the entire PIH/ZL network in Haiti. We were sitting at a small circular table in her office in the upstairs administration area of HUM, the pages of our open notebooks fluttering each time the circulating desk fan rotated past them.
I raised my eyebrows and looked at her. “That would be . . .” I wasn’t sure how to complete the sentence: ambitious, challenging, crazy, or . . . the culmination of our neurology work in Haiti for the preceding three years.