“In general,” Martineau explained to me, “people who come from the rural areas may seem simple since they do not have access to education. But they understand. There are certain words, and once those words resonate in their ears, they have an idea. For example, when you say ‘operation,’ this word is heavy with consequence for them. It invokes fear. The doctor is going to take a knife to you. So they know there’s a lot of risk. They know once there is an indication for an operation, in general, there is no going back.”
In addition to being a brilliant physician and colleague, Martineau had always helped me understand the patients we saw together in Haiti and the context in which they lived. He offered to present everything to Janel and let us know what he thought.
A few days later, Martineau wrote to me and Michelle.
Unfortunately, the patient has no family to support him. He was abandoned by his mother some time ago and is now cared for in a church, where the pastor provides housing, food, and transportation fees to send him to the hospital. The congregation and patient are ready to take the risk of surgical intervention presuming total and unconditional financial support by the US hospital, because the patient has no family in Haiti or in the US. So now it is up to us to determine if we can take on all of these responsibilities.
Sadly, abandonment of sick children is not uncommon in Haiti. Infants are sometimes left in the hospital after delivery, because the parents either can’t afford to take care of them or think better-off hospital staff might adopt them and provide a better life for the child than the parents could. Once, a severely disabled teenager with cerebral palsy was simply left on the doorstep of the HUM rehabilitation ward, bedbound and unable to speak, only able to writhe and scream. The rehabilitation team never figured out where he had come from. No long-term care facility in Haiti would accept him, and so he has lived on the rehabilitation ward ever since.
I was both saddened by the story of Janel’s abandonment and impressed by the extraordinary commitment of his church to take him in and support him. But I worried that a young man with no mother or father would raise a red flag for hospital administrators in Boston. They would be concerned about whether there was a safe and sustainable plan for the patient after he returned to Haiti, especially if he suffered a complication of surgery that made him worse.
Although the news of Janel’s circumstances worried me, it didn’t seem to bother Michelle. Her one-line reply to Martineau was emblematic of her tireless commitment to helping the poorest patients irrespective of potential structural barriers:
Agree, very unfortunate situation but even more reason why we should help!
Martineau organized the MRI, and Michelle and I pitched in the seven-hundred-dollar cost to make sure we wouldn’t be waiting for budget approvals or other administrative delays in securing the funds.
One month after Martineau had originally contacted me about Janel, he got his MRI. It confirmed that the large tumor was arising in the ventricles and compressing the surrounding brain structures but not invading them. I sent the images to Ian. His response was what I was beginning to recognize as his usual mix of terse and definitive neurosurgical precision:
I would definitely offer surgery here. Thanks for sending the images and involving me.
Since we now had confirmation that surgery would be offered at Brigham and that the patient was willing to accept the risks, Michelle and I began reaching out to hospital administrators to ask about the logistics. Our administrative colleagues at Brigham outlined the following steps: fill out hospital paperwork applying for free care based on the patient’s financial situation, obtain a cost estimate of the operation from the neurosurgery administration, apply for outside funding to help offset the hospital’s costs, and develop a clear plan for where the patient would go when he was discharged from the hospital before he returned to Haiti.
In order to provide free care, the hospital required documented proof that the patient couldn’t pay, such as bank records. This step was simple: we explained to the hospital administration that Janel was so poor he didn’t even have a bank account.
The cost of Janel’s surgery and perioperative care was estimated at $157,000. But many types of brain tumors require treatment with radiation and chemotherapy to reduce the risk of the tumor recurring. We presented Janel’s case at a Brigham brain tumor board—a conference where all practitioners involved in the care of patients with tumors assemble to discuss cases: oncologists, radiation oncologists, surgeons, pathologists, social workers, nurses, case managers. Although nobody at the meeting had ever seen a tumor of this size, its location and radiologic characteristics suggested a few possibilities as to what type of tumor it could be. The group agreed that any of the possibilities would likely require nearly two months of radiation after surgery. This added around $40,000 to our cost estimate, bringing the total to just under $200,000.
It was a lot to ask of the hospital to provide nearly $200,000 of care for free. Fortunately, Brigham had previously worked with the Ray Tye Medical Aid Foundation, a philanthropic organization whose website describes its mission as “funding in-hospital life saving medical treatment and surgeries for those who do not have medical insurance, and for which no other financial resources are available.” Their website has countless moving stories of patients from all over the world for whom the foundation has funded surgery in the US. In the upper right corner of the site there is a link for a “Medical Aid Request.” I clicked the link, filled out my name, hospital affiliation, and email address; Janel’s name, medical condition, and medical needs; a paragraph explaining the team we had assembled at Brigham who would care for him, including specialists in neurology, neurosurgery, oncology, and radiation oncology; and an estimate of the cost of his care at around $200,000. I read it over a few times, then clicked the SUBMIT button.
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As a new faculty member, I had a temporary office in a space the Brigham neurology department rented across the street from the hospital, three floors above an ice cream shop. Since the office was tucked away in a location most people didn’t even know was part of Brigham, nobody ever dropped in. In fact, scheduling a meeting in the office required giving detailed instructions, and most people got lost trying to find it. The office had no windows, and the fluorescent lights made me lose track of what time of day it was. I didn’t spend much time there since I was mostly in the hospital seeing patients or teaching residents and students. But when I was there, it was a quiet refuge from the intense environment of the hospital where I could spend uninterrupted hours focused on the tasks of writing clinic notes, returning patient phone calls, catching up on emails, working on teaching presentations, and trying to write articles.
On the morning after I submitted the online medical aid request form, I was doing just that. It was so quiet and I was so focused on whatever I was working on that I startled when someone knocked on the door.
“Can I transfer a call in to you?” asked one of the call center staff members as I opened the door. The clinic’s call center was housed just down the hall from my office.
“Who is it?” I asked anxiously. I was concerned that if someone was knocking rather than just sending an email, it must be some type of patient emergency. Just a few months into practicing independently after nearly a decade of training under the supervision of others, this new level of responsibility still frightened me.