“You’re thinking about this the right way,” she began. “These are the horrific inequities we see in places like Haiti. But in cases like this, we can go beyond them. What’s his name?”
“Janel,” I said.
“We need to get Janel to the US,” she said firmly.
We plotted the course. With its modern operating rooms, HUM had become a focal point for volunteer surgeons offering to serve in Haiti, including several groups of neurosurgeons. Michelle and I agreed that Janel’s surgery would be too complex and risky to perform in Haiti, but she suggested we reach out to these neurosurgeons about his case. She hoped they might respond by proposing to bring the patient to one of their hospitals.
I sent an email and the scans to the neurosurgeons Michelle had mentioned. They agreed that the case required surgical expertise and equipment not available in Haiti. Given these resource limitations, they felt that a palliative approach should be offered. They suggested treating the excess fluid buildup in the brain that the tumor was causing by implanting a VP shunt—a system of plastic and rubber tubing connecting the brain’s ventricles (the V in VP) to the abdomen (specifically the peritoneum, the P in VP). Implanting a VP shunt is a relatively quick and minor procedure compared to brain tumor surgery, and one that could be performed in Haiti. But this would do nothing about the tumor.
With a palliative approach, the neurosurgeons were proposing to treat one consequence of the disease, but not the disease itself. In other words—my disappointed, angry, PIH-inspired version of their words—provide care that is better than nothing but still let Janel worsen and die just because of where he happened to be born.
Would it be possible, I inquired in a follow-up email to the neurosurgeons, to consider bringing the patient to one of their hospitals for surgery? The neurosurgeons wrote back that they disagreed with trying to do this for several reasons. First, they felt that bringing this patient abroad for care would be unsustainable since there was no guarantee that this could be offered to the next brain tumor patient who might arrive at HUM. Second, they thought treating the patient wouldn’t be cost-effective—how could we justify hundreds of thousands of dollars’ worth of care for one patient when that money could be used to help so many other patients with lower-cost illnesses? Finally, they were concerned the surgery would be too high-risk, with the potential for the patient to worsen afterward, even if performed in an optimal high-resource setting. The neurosurgeons reiterated their recommendation to pursue a palliative approach by implanting a VP shunt, but not touching the tumor.
Sustainability. Cost-effectiveness. These considerations may be well-intentioned on a policy level, but they break down when faced with a patient in front of you. True, we likely wouldn’t be able to help every patient who needed brain surgery in Haiti. But why should that prevent us from trying to help Janel? True, for the potential hundreds of thousands of dollars that would go into this one patient’s treatment—surgery, intensive care, and radiation and chemotherapy if the tumor turned out to be malignant—we could vaccinate an entire region of Haiti against deadly childhood infections. We could probably even build a whole new hospital in Haiti. But try explaining that trade-off to Janel. What would be the point of building more hospitals if they would never be able to help him? If we extend life for the world’s poorest by providing vaccines and other aspects of primary healthcare, what do we tell our patients when they develop more complex conditions, like brain tumors?
Paul Farmer—one of PIH’s founders and current leaders—has described the struggle to serve those right in front of you while simultaneously working to reduce the longer-term risk of others ending up in front of you as the chief tension of PIH’s work.
With Janel right in front of us, it actually didn’t seem like that much of a tension to me. I knew I couldn’t come up with a sustainable, cost-effective solution that would solve enormous problems like global poverty and inequitable access to modern healthcare—I would have to leave that to the Paul Farmers of the world. But as a doctor, couldn’t I try to help this one patient?
About 4 billion people lack access to basic healthcare, let alone the type of advanced healthcare that patients like Janel require. That’s more than half the world’s population. It’s an astronomical number, 4,000,000,000. We count stars in billions; Earth is 4.5 billion years old. It’s an overwhelming number—it would take more than 120 years to count to 4 billion at a rate of one number per second. But it’s a real number. A real number of real people. Patients like Janel remind us that overwhelming global statistics are composed of individuals, each with hopes and dreams, family and friends, and a right to live a healthy life free of disease.
Every billion is made up of a billion ones.
PIH describes its work as being based on solidarity rather than charity alone. Charity is necessary, of course: those who have more should help those who have less. But charity means us giving to them, to some abstract all. Solidarity redefines this relationship. It invites all of us to share with each other, because we are each part of the same all.
The final phrase of PIH’s mission statement illuminates what’s at stake when adopting this solidarity-based approach to medicine:
When our patients are ill and have no access to care, our team of health professionals, scholars, and activists will do whatever it takes to make them well—just as we would do if a member of our own families or we ourselves were ill.
What would it mean for me to try to do whatever it takes to make Janel well, whatever it takes as if he were a member of my own family, whatever it takes as if he were me myself?
Aspiring to live up to this mission statement, I felt compelled to try to get Janel the care he needed, to bring the benefits of modern medicine to him, or him to the benefits of modern medicine. But the neurosurgeons we had written to clearly thought this wasn’t a good idea—unsustainable, not cost-effective, too complicated. Should I throw up my hands at the inequity that’s a much larger problem than Janel alone, turn a blind eye to his bad luck, and focus instead on helping patients in simpler situations with more straightforward solutions? Or should I choose solidarity over sustainability, compassion over cost-effectiveness?
I chose solidarity. I decided to try to do whatever it took to help Janel, to commit to this credo, to make this mission statement my mission. Did I make the right decision? This book explores that question, telling the story of what happened when I stepped from the realm of inspiring principles into the reality of taking action. It’s a story of triumphs, tragedies, and the confusing spaces in between as I attempted to bridge the gap between the rich-world medical metropolis of Boston and one of the world’s poorest regions in rural Haiti. It’s about what I learned and grappled with as I strived to do what I thought was the right thing and struggled to figure out the right way to do it.
By choosing solidarity with Janel and other patients in Haiti, I witnessed their extraordinary bravery, courage, and faith as they faced debilitating neurologic disease in the midst of dire poverty. By choosing solidarity with doctors in Haiti like Martineau, I found inspiration in their humble heroism as they advocated for their patients to get the care they desperately needed, even when it didn’t exist in their country. And by choosing solidarity with my colleagues in Boston to do whatever it took to help our patients in Haiti, I learned how a few individuals working together might just be able to make a small difference in those big billions, one by one by one.