“Doctor, my son hasn’t eaten since yesterday morning. Can you help us with some food?” Roberto’s mother asked me on the second morning of chemotherapy for a muscle tumor.
“He can eat. In fact, he should eat before chemotherapy,” I responded, not understanding her rural Creole accent right away. Many patients don’t eat when they visit the doctor because they believe that all blood tests need to be done while fasting. I assumed that he hadn’t eaten that morning, when in fact he hadn’t eaten since the day before.
“We don’t have any money for food. In Jérémie, where we live, we don’t have trouble buying food but Port-au-Prince is expensive and we don’t have any family here.” She wore the same pink shirt spotted with yellow hearts each visit to the hospital and looked ten years older than her chronologic age. With five other children awaiting her at home, there was likely not enough food in Jérémie either, a fact that she may have been too proud to admit.
Each time Roberto arrived for chemotherapy, he was slightly thinner, already a young man who couldn’t afford to lose weight. His wispy hair, gently falling out from the chemotherapy, started to turn red from protein malnutrition. Embarrassed that I misunderstood her Creole and ashamed that a patient went a day without eating while a part of our program, I immediately asked Gabrielle, the program coordinator, to offer his mother money to buy food on the street.
Buying Roberto and his mother something to eat wasn’t just an act of kindness, but will in fact improve his chances of effective healing. Nutrition plays a vital part in beating cancer; more importantly, though, the provision of comprehensive cancer care services minimizes the financial and social barriers to care, increasing the chances that patients will complete treatment according to the prescribed schedule. The provision of these supplementary services has been a staple of our program since its inception.
Public health research has demonstrated that tuberculosis patients who receive food supplementation and help with travel fees to clinics are significantly more likely to complete their treatment and take more of their pills during the six-month course. Previously, we blamed patients for “noncompliance,” a pejorative phrase that intimates that patients choose to not do what their doctor asks of them — as if the poor patients in Haiti consent to choose between buying food for their children or taking their medications or seeing the doctor. After ten years of working in HIV and tuberculosis, we’ve extrapolated those lessons learned to the provision of cancer care.
The timing of chemotherapy is extremely important to improving the chances of survival. Patients come to the chemotherapy ward for six hours for the drug infusion and then return home for 21 days. After six cycles of chemotherapy, the expenses surrounding treatment can accumulate, especially for those who travel from outside of Port-au-Prince. Roberto and his mother initially heard about our cancer center from a doctor in Jérémie, at least six hours away by car and even farther by public bus. The journey cost $50 roundtrip for Roberto and his mother, a staggering amount of money for an impoverished rural family.
I’d treated patients in similar situations in Rwanda, patients who had to traipse across the entire mountainous country to receive chemotherapy or surgery. If a patient couldn’t afford travel fees and didn’t receive supplementary services, days or weeks would slip away while the tumor grew and the patient collected the money for the trip. When they finally arrived at the hospital, a palpable sense of futility filled the ward as we measured the growth in the tumor.
I knew that Roberto would become a “noncompliant” patient if he left the ward without transportation fees. In addition to the stench emanating from the tumor, he smelled of poverty, his shirt slightly too dirty for one or two days’ wear, a thin film of grime on his fingertips. He would go back home after the one cycle of chemotherapy and return three months later with a massive tumor and a sad story about how his young brother fell ill or how the drought had affected the family’s crops adversely.
I never directly hand a patient cash because I hope to avoid perpetuating a culture of dependence or any expectations based on race or nationality. Instead, I direct them to Gabrielle who has petty cash available at her disposal to distribute according to the patient’s needs. When patients require medications from the pharmacy, support for travel or testing that is not available at our hospital, Gabrielle offers the funds and archives the transaction.
Any service outside of chemotherapy or surgery must also be viewed as supplementary services. When Jeanne Marie, the 34-year-old with breast cancer, required an ultrasound of her ovaries and could not afford the $75, we helped her out. Without the ultrasound, we could not have continued caring for her cancer,. After caring for her for eight months, we weren’t prepared to give up over $75.
We’re filling in the corners with non-medical interventions, but ensuring that they all complete the treatment. In Rwanda and Haiti, I’ve yet to encounter a patient or family who has tried to take advantage of the system. We’ve given Daniel, the boy with the neck tumor, more than $2000 for passports, visas and room and board for the duration of the radiation therapy in the Dominican Republic. Despite the complete lack of resources of her family, Jeanne Marie has stuck with the treatment course, riding to and from clinic with the 25 cents that we give her each time she comes to see us. Big and small, the supplementary services allow the patients, families and doctors to simply concentrate on healing.
Vincent DeGennaro is an internal medicine doctor and a global public health specialist at the University of Florida’s Division of Infectious Diseases and Global Medicine and works half time in Haiti with the nonprofit Project Medishare. See his An American Doctor in Haiti blogs.