doc w/ Pen

In the United States, we’re used to any medications or supplies being available at any time in any dose: ask and ye shall receive. In Uganda, that’s not the case. Only certain drugs are available through Naggalama Hospital. For example, morphine is the only opioid. Even medications that should be available often run out (and morphine did run out while we were there). For those medications that are actually present, the pharmacy might only carry one dose — a dose that’s certainly not appropriate for every patient. With all of these constraints, palliative care (and any care, really) becomes a challenge unfamiliar to visitors. You learn to make due, and to get creative. Here are a couple of examples of how that played out while I was there.  

Drs. Jemella Raymore and Randi Diamond halving 25 mg tablets of amitriptyline for a patient with spinal stenosis. We hope the medication (now at a more appropriate dose) will help relieve her neuropathic pain as well as her depression.

One day, we visited the home of a patient with horrible spinal stenosis. Her lower limbs were essentially paralyzed. She was unable to walk or even stand. Her upper limbs had become extremely weak too. She could no longer raise her arms above shoulder height, and grasping anything in her hands had become impossible. To help treat her neuropathic pain and her depression, the palliative care team decided to use a drug called amitriptyline. But the only dose available, 25 mg, was far too high for this situation. The round, bright pink pills were coated, so couldn’t be broken easily by hand. Thankfully, though, they were scored in the middle. So we asked for a knife. What we got looked like a small rusty machete, but it did the trick, and now she has a more appropriate dose. 

Zofran is a great drug to treat nausea after chemotherapy. But it’s expensive, and therefore not available at Naggalama. So for a woman who’d had a mastectomy, and is now undergoing chemotherapy, the team decided to try a drug called haldol. A dose of 0.5 mg or 1.0 mg is where we would start in the United States for a case like this. But the only dose available was 10 mg — enough to completely knock her out. So as we sat talking to the woman in her home, Dr. Randi Diamond broke the round, white pills into halves, and then quarters, to get a 2.5 mg dose (roughly). It’s something. And hopefully it will control her nausea and vomiting without making her too tired.

Getting patients their medications is a start, but just like in the United States, medication compliance is another issue — though perhaps for different reasons. The woman with spinal stenosis, for example, was afraid to take her morphine (and other medications) without a family member around because she gets dizzy. And no one is around on weekdays. So she’d only been treating her excruciating pain on the weekends. The palliative care outreach team from Naggalama Hospital does supply its patients with needed drugs like morphine and amitriptyline. But for many other people, the cost of medication — priced in Uganda at pennies a pill — is simply too expensive.

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“Es un día de turquesa!” I belted out as Jemella and I walked down the path to the adult medicine ward at Naggalama Hospital. I was commenting on the fact that four of us had randomly worn turquoise shirts and khaki pants that day. Obviously, no one here speaks Spanish. It’s the weirdest thing. Being here in Uganda, hearing the local language (Luganda) all around me, I suddenly have the urge to speak the only foreign language I do know — Spanish.

This is what I’ve concluded about that impulse: Most of the international traveling I’ve done has been in South America. I’m fluent in Spanish, so language wasn’t an issue there. I told my taxi driver where to go, ordered pisco sours, bought fresh bread, and did pretty much everything else without a problem. Uganda is a different case entirely. I know all of four words in Luganda. With so many strange sounds flying around, I think I’m grasping at something with both foreign and familiar flavors (Spanish). While not helpful in the slightest, the urge remains. And it remains unhelpful, though entertaining.

Dr. Randi Diamond and me, out in the field doing palliative care house calls — in our matching turquoise and khaki outfits.

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Dr. Jemella Raymore, the ward nurse, and I must have talked with him for a half hour. He was a slight man, wearing black pants too big for his spindly legs. His shirt, camel colored with blue plaid sleeves and collar, was only buttoned halfway up. He was seated on his hospital bed, which was covered with a purple- and gold-flowered fleece blanket. He kept his hands folded and his eyes down, speaking softly, almost inaudibly, as if he weren’t even here. Or didn’t want to be. We were almost the same age, I realized as I looked at his chart. He looked so sad. He’d swallowed poison two days ago and been brought in on a motorcycle. He survived the suicide attempt, and was about to be discharged. But he was clearly still in great distress. So his doctor consulted the palliative care team. 

This man’s case isn’t technically a palliative care case. But it seems that any time feelings are implicated, the palliative care team gets called. (Under normal circumstances, this means calling the local palliative care nurse and her assistants, but it also means calling the American doctors when they’re visiting.) There’s unease around feelings, and what doctors can, or should, do about them. So Jemella and I talked to this man. We listened to his story, one I guarantee no one else at the hospital had heard: his family and his wife have been verbally abusing him. He told us that as a result of this abuse, he’d thought about suicide before, even picking up the poison, but always putting it back down again — until a few days ago. We asked him about his life. About his children, his work, what brings him joy. We encouraged him that his life matters — to his friends, and to us, even though we may be strangers. We encouraged him that finding someone to talk to about his struggles, whether a religious figure or a friend, is not a sign of weakness. It’s a sign of strength. We told him he’s a strong person for enduring so much pain. 

We also asked whether he still felt like hurting himself. At that, he finally made eye contact. The nurse translated his words as this: “I will not repeat.” 

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Conditions in this rural Ugandan hospital are very different from those in the urban New York City hospital affiliated with my medical school. Grief, though, is very much the same — as is the importance of listening to patients express their grief.

In palliative care, it’s called a “warning shot.” When you’re about to give someone bad news, you give them a heads up before you drop the actual bomb. One late afternoon, I got a warning shot in the operating theater here in rural Uganda when I witnessed my first Caesarean section. But like so many people, I believed in the best. So the next morning when I returned to see the mother and new baby, I did so with hope.

I didn’t expect that my first birth, nor my first Caesarean section, would be in Uganda. I’m learning that here, the unexpected is the expected. We had simply gone to the hospital for a quick tour. We ran into one of the doctors just as he was headed to do a C-section. He was happy to let me and Jemella, who is a palliative care physician from New York, watch. As Jemella and I watched the surgery, she talked me through what was happening — she described the layers of flesh the surgeon was cutting through. She prepared me for the gush of amniotic fluid (cause for the surgeon to wear a plastic apron and white rubber galoshes). What neither of us was prepared for though was the actual birth — a premature baby, umbilical cord wrapped around his neck, skin blue blue blue. That’s all I could think when the doctor pulled the baby out through the incision in the woman’s abdomen — “I can’t believe how blue that little baby is.” I wondered to myself: “Is he even alive?”

Not how I expected this birth to be. I expected the baby to come out pink and healthy, to wail, to be placed in his mother’s chest as she roused from her anesthesia. I expected to see that maternal glow as she saw her child for the first time and stroked his head. None of that happened.

I was standing near the foot of the operating table with a good view of the surgery, which was still in progress. The doctor was closing the uterus with sutures and sutures and more sutures. As he did so, the woman started to wake up and moan — clearly not enough anesthetic was used. At the same time, I watched with horror as across the room, the nursing assistant (I think that’s what she was) massaged the baby’s chest, suctioned out his nose and mouth, put a tube in his nose for oxygen, tried to help him breathe with a mask. It felt like forever before he made a sound, before I saw his fingers wriggling in the air.

There were just so many things wrong with the picture, to me as a medical student coming from the United States. When that baby was delivered blue, he should have been rushed to a NICU, surrounded by a team of neonatologists. His mother shouldn’t have nearly awakened from her anesthesia. But other things too, smaller ones — we were all wearing green cloth masks and cloth headscarves. Rather than gauze for soaking up blood from the surgery, they used sterilized cloth. One of the surgical assistants was actually wearing a scrub dress, her legs exposed, and open-toed plastic sandals on her feet.

Those differences, and their potential impact on patient care and safety, burned in my mind when we returned that next morning to check on the mother and her new baby. He had died in the night. His mother never even got to see him, much less hold him. She was distraught and traumatized, and for good reason. Babies aren’t supposed to die. Not ever, and especially not like that — in a way that might have been prevented had he been born somewhere else.

As I stood there with the grieving mother and her family, I had no words. I had gone into her surgery so excited for the outcome — my first baby! I imagine maybe she went into her surgery excited too, excited to meet her new child. If I felt like this, like someone had cut out my heart and wrung it dry, how must she feel? How humbling that she would allow Jemella and me in her life at this dark moment.

And yet, as Jemella and I turned to leave, she and every family member there shook our hands and thanked us for having come to see her. For what? What had we done for her? In practical terms, nothing. Her baby boy was still dead. She was still in the postpartum ward at the hospital, recovering from her surgery and listening to the echoes of other women’s babies crying when that’s something her own baby would never get to do.

We had listened, had held her hand, had tried to reassure her that this wasn’t her fault. Whether it helped I don’t know. But I hope so.

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