I’m sitting in the quiet living room of a patient whose home we are visiting. The wall ahead of me is a faded orange, the wall to my right sea green. They are made of rough, uneven cement, the roof over me is open wooden poles with metal roofing visible from below, light sneaking in around holes in the ceiling and walls. Electrical wiring is visible from the large sofa where I am sitting. There are no other chairs. A stand with a television is directly in front of us, some dried flowers to the left, a mirror, an empty bottle for decorations, a well worn gray and black striped rug under our feet. We are waiting to meet someone.
Sam has invited me here for a home visit, part of a palliative care program that was recently launched in an attempt to help those who are dying here where there is no home health care and the great majority of folks have no health insurance. The patient’s sister has warmly welcomed us already to the swept courtyard, through the doorway into the modest kitchen and the living room. Her smile is broad, but her eyes betray her grief. She is 19 years old. The patient is her older sister. At age 20, she is dying of ovarian cancer.
The patient is entering the room. She wears a loose, wrinkled long tan shirt. Her frame is emaciated, her face sunken, her belly swollen with fluid, evidence of the deadly disease she is carrying. She smiles weakly at our presence, and shuffles on flip flops to the seat next to me. I can see her ribs through her shirt. Her eyes bulge slightly, all the fat around her eyelids is gone. Her lips are dry, her hair is covered with a wig. She speaks slowly, as though even speaking is an effort. Her breaths come in short, shallow gasps, her diaphragm unable to move downward against the pressure of the abdominal fluid. She is telling us that she can’t eat, she feels sick, her pain is intense, but she is glad to see us.
Sam and the young man who is a nurse at the hospital patiently explain the disease she is suffering from. Troublesome comforters we are, we cannot lie, we are bound to tell the truth. I see the pain in their eyes, the sister alternately melting to the floor, and covering her eyes, hoping to disguise the pain from which she cannot hide. I am choking up. I look at the patient, then I cannot bear to, and I look away. Their suffering is so intense. We bring no hope, only pain. Our words are daggers to the two sisters.
Her suffering is only part of the story. The girls’ father died 10 months ago. Their mother died six months later. Then this young woman was diagnosed with this terrible disease.
The sister brings her medicines for us to inspect. Someone has placed her on liver supplements. It’s not a liver disease. Someone has given her lactulose, a powerful laxative used for end stage liver disease. It’s not liver disease. Someone else has prescribed TB medicine for her. It’s not TB. I can understand why practitioners gave her the medicine; they were hoping against the evidence that there was something treatable they could offer her. It is false hope. So my friends and I are here to comfort her, but we are doing a disastrous job of it. My heart is breaking. I have so many questions. Who is her support? Who provides for the family? Who will be with her as she lies dying? Does anyone pray for her? Bring her food? Sit with her? Read to her?
We advise her on her medicines, talk about the future, offer the support that we can, and I sit silently listening, considering her desperate state. Sam asks me to pray for her, and I lay my hand on her frail shoulder, and I choke out a prayer for her comfort, for peace, for God’s presence, for her pain to be less.
We prepare to leave. A young boy enters the room, barefoot, clad in t shirt and shorts. He smiles, and the room lights up. “What is your name,” asks Sam in Portuguese. “Anselmo.” “How old are you?” “Two,” he replies incorrectly. “No,” his mother corrects. “not two. You are three now.” “Three,” he says, but not convincingly. “Show them how many fingers.” He struggles and holds up two. Mom counts on his fingers. “One, two, three.” He grins and holds up three fingers.
We step respectfully out of the dim house, gripped by grief as it is. I look down at Anselmo, walking beside his mother, accompanying us to the gate. I wave. He reaches up and takes my hand. We walk together, hand in hand to the gate where his mother, the sister of our patient, thanks us and bids us goodbye. She’s smiling, but her eyes are overwhelmed, terrified, filled with sorrow. Anselmo waves happily as we climb into our truck. They are happy to have us come. But they hate our reasons.
I’ve gained my composure again. I ask Sam my questions as we drive away. “They are alone,” explains Sam. “They have an uncle who works a long way from here. An aunt lives on the other side of town somewhere. The sister goes to work every day, leaving the small boy alone with the patient. She can hardly get out of bed or take care of him.” I don’t ask any more questions. But I’m thinking them.
How can it be this way? How many more are there? People who are forgotten about, swept under the rug, their potential, their futures, their contributions, their joys and families lost, without access to healthcare other than the wrong medicines.
One person can’t fix everything, I know that. But there is something we can all do, we can reach the person who is suffering right in front of us. We can make things a little more just, a little more comforting, a little more compassionate.
I’m heading to the airport now. I review the goals I have had for this trip to Angola. Have I learned what I came here to learn? Yes, but not the way I thought I would. I found that my hands are still good, my mind is still capable of learning, my health is still strong, my Portuguese is terrible. I learned that there is desperate need for high quality family medicine training here. I learned that there is a 100 bed mission hospital in a remote village that is the best option for care for thousands of people, but they can’t provide safe c/sections. Not yet. I learned that there is a 20 year old girl dying almost alone in a modest African home, a three year old boy who deserves to be a kid, and a sister who is already grieving all that has been lost and all that will be lost. I’ve learned that there is something I can do. And I will.
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