Roosters and rain signaled another day. Sleepy heads flowed into the dining area for breakfast, and before long I found myself again in the surgical tent with an ultrasound probe scanning. We spent some time with the midwives and felt them getting more comfortable with the technology and the techniques. After we finished the training session, Lazaro called us over to assist with the inpatient team on rounds; he had a patient he was worried about.
She was a lady, probably in her sixties or seventies. When I first saw her, she was sitting upright in the bed, with a family member providing comfort. My eyes were drawn immediately to an ugly lump across her neck. Her eyes were sunken and exhausted, although her breathing looked comfortable. Non-existent musculature and prominent bones shaped out the rest of her body. With her breathing I could hear stridor, a characteristic shrieking of a narrowed airway. In under ten seconds, I could tell that this lady was not well in a bad way. She was dying.
The thyroid, which has featured prominently in my patient encounters in Uganda, can become cancerous. Thyroid cancers come in several different forms, most of which rarely cause compression or changes in the hormone mechanics. However, there is one subtype of thyroid cancer that is highly invasive, eroding through the gland to invade nearby structures. This is called anaplastic thyroid cancer, and it’s the only form of thyroid mass that can cause compression of the windpipe like we were seeing in this lady.
Probing the family member for a clearer history elucidated details consistent with this: the mass had been growing quickly, over the span of two months. More recently she stopped being able to eat due to swallowing difficulties, and now her breathing was becoming compromised as evidenced by her stridor. We didn’t have to ask many more questions. With every passing day she grew closer to asphyxiation.
On my exam the mass was hard, highly irregular, with different lumps and consistencies throughout. Her lungs sounded clear, but she was so bony that her ribs stuck out sharply, meaning I couldn’t press my stethoscope flat against her. For completeness sake, we scanned the mass. It was complex with a heterogeneous morphology. All of this provided the evidence to confirm our suspicion. Even in the US, these cancers were a death sentence when this advanced. Not to mention our lady was already severely malnourished, forget radiation or chemo. We had no options.
We had a house officer in training with us, Vincent, who was helping out at the health centre.
‘What will we do?’ he asked. It was a difficult question to answer.
‘Well,’ Lazaro started in his Cuban drawl. ‘This lady has an invasive cancer, sadly she will die from this. What we have to consider now is how we can offer her the best possible care for her as she approaches the end of her life. Unfortunately she has a bad form of cancer, which means that to die of this cancer means to die of starvation and asphyxiation, this is a horrible way to die. We can do some therapies, steroids, to help reduce the swelling of her airway and help her to breathe more comfortably, but this will not fix her issue.’
‘Steroids for her?’ Vincent asked. ‘Will this not make her more likely to get infection?’
‘It will,’ I said. ‘This is true. In this case however, I think Lazaro is right. She is facing a horrible disease course with immense suffering. The steroids will not treat the cancer at all, but it will help with her symptoms. Right now, look at her, she barely has the strength to sit up, she has sunken eyes, cannot eat or drink; she is exhausted. Steroids may help reduce the airway swelling for her comfort, they will also give her some energy, which may make her feel better enough at least to go home if only for a short time. I would advise to give her an anti-parasitic with the steroids to reduce any burden from common worms. The risks of infection do not outweigh the benefits for her; she deserves to die in peace at home with her family, not here in this strange place.’
I could see Vincent’s discomfort with this. He was young, optimistic, and I don’t know that he liked the idea of conceding defeat when we had been here for less than fifteen minutes. He didn’t say anything, but I could feel it.
‘Vincent,’ I said. ‘Sometimes the best we can do is give patients dignity. We are in an impossible position here. This is why cancer sucks.’
He nodded.
We agreed to discuss the case with Dr. Brian, and the local staff took over, communicating all of this to the patient and her family. I was hopeful that at least with some IV fluids and steroids, we could get her to meaningfully interact with the world one last time before she faced worsening of her sickness. This would have to be our form of palliative care. In both the US and Ireland, there would be a complex pathway to get the patient onto a hospice program with morphine and other adjuncts to alleviate suffering; we would have none of that here. I nearly hoped she’d be fortunate enough to get a pneumonia before the tumour fully occluded her airway and she choked to death.
It always feels odd to consult on these cases for rounds and then fuck off to other things, leaving the mess to the local staff that I knew was lacking resources, time, and effort. It’s not how I was used to doing medicine. I like to take charge of patients, delivering the best I can with targeted focus. I have never been interested in consult-based medicine that leaves the work for someone else. In these circumstances though, it wasn’t my job to take charge. I don’t know that further contributions from me would be helpful, well received, or fruitful to the patient. I had to just take it and move on.
That afternoon we came by the primary school to find the health screening was finished, with the target being hit that morning by the other branches of our team. With the added time, Planning for Tomorrow wanted to show us around the new grounds they were building for the secondary school. Tayseer and his donors had contributed significantly to their development projects over the years. One of the big issues for the kids had been a lack of secondary education after primary school, meaning that children had to independently seek sponsorship to fund their education in nearby Hoima at a boarding school. In aims to alleviate the need for this, one of the charity’s projects was the construction of a secondary school within the camp for higher education as well as vocational training like carpentry and agriculture. This construction was all in progress, and the school’s director wanted to show us how far they’d come.
They had nearly finished one of the classrooms, a teaching hall of concrete brick with metal roofing. The floors were still unfinished, and no door was hung. During our tour, the school’s representative told us that this room was for first year secondary students, and they were still trying to secure funding for years two through four. Trying to plan long term projects in the humanitarian space is hard, with money that can unpredictably dry up at any moment. The larger the investment, the larger the risk, and even once the classrooms were finished, we’re still talking about hiring and lodging teachers to come from outside the camp. If donors choose to divert elsewhere, all these projects go unfinished and the whole thing collapses. Consider that at the bottom of this are hundreds of children whose education limits their ability to climb out of poverty. It all felt somewhat unsettling.
We got the chance to meet some of the students. The first, we’ll call him Jim, was the head pupil and had been part of the cluster that was sent to boarding school in Hoima. He was well dressed and articulate. One of the things he had been working on parallel to his studies was a honey business, recruiting families in the camp to cultivate honey using tribal techniques. Over time, he was purchasing more bee colonies as more families joined the project and split the income. He even brought us some bottles the next day at the guesthouse. I also met one of the girls, we’ll call her Ella. She was 16 and also part of the boarding school group. She approached me to ask questions about what countries I had been to, my favourite foods, and what I liked to do. Our conversation was surprisingly, well, normal. It was the same I would expect from a 16 year old girl anywhere else. She told me about the music she liked and how she wanted to move to France someday and work as an engineer. She got some of her friends and they showed me around the school. If you were to have told me this conversation was happening with a refugee, I wouldn’t have believed you. It gave me some sense of comfort to think that despite her circumstances, she still had dreams and goals that rivalled or exceeded her peers halfway around the world. She, like many others, was still unsure if she would be able to secure funding for her boarding school over the next few years. Certainly makes you appreciate your privilege.
I think about the power of hope, and what that can mean. If my presence in these places truly is futile in generating more upward mobility, at least I can rationalize that it makes people like Jim and Ella feel like they haven’t been forgotten. I wonder if the day the Mzungus stop coming is the day the refugees feel the world has given up on them. It made me deliberate again, like I have spoken about before in these journals, on whether healthcare really is the most important thing. Sometimes I wonder if there are things that should come before. I can teach ultrasound and treat malaria for a thousand people, I could even train physicians and build clinics to do the same, but I ask myself what the point is without correcting the underlying factors of poverty, conflict, lack of safe community structures, and hope. It’s almost as if every time I get to a problem, I realize the origins run farther back, and I keep following them deeper and deeper like the roots of a weed until I can’t dig any further and have no chance to pull them out. As one person I hope that I can learn enough, teach enough, and inspire enough that my footprint at the end of all this contributes to the betterment of man, not just my indulgence providing care without addressing the roots of human suffering.
One can only hope.