Uganda is a paradox. The land is rich and fertile. The sun shines brightly every day, and yet it rains often enough to keep things growing. Family and community are highly valued, and people are generous with their time. Yet there is so much unnecessary suffering. Somehow, though there is food growing everywhere in sight, many children go hungry. There is not enough access to clean water or sanitation. Malaria and HIV/AIDS are rampant, and while treatment for those has become much more accessible to the population, some diseases and conditions can only be treated in Kampala (an impossible trip for many).
The existence of all of these terrible problems that are responsible for so much early death explains why the lack of palliative care services can go unheeded. Even now, I wonder how Dr. Anne Merriman’s and her sidekick-turned-superhero Rose’s decades-long project of bringing palliative care to all of Uganda has been so successful…faced with saving a life, versus providing comfort at the end of one…what donor would choose the latter? How could palliative care possibly be a priority?
Though I knew little about African palliative care before this summer, I quickly became a supporter in my first weeks here in Uganda. I understood the importance of PC services. My mind was invested. But today, my heart has been converted.
I am in the district (and town) of Masaka spending the week with the Kitovu Mobile Palliative Care Unit – Resty and Rose (both nurses) and Aloysius (their driver). Rose and Resty see patients in their office and spend MWF with Aloysius in an SUV driving around the 7 districts they serve to visit patients in their homes.
We spent the day in the district of Rakai, which borders Tanzania and was hit hard by HIV/AIDS – in fact, Rakai was the first district in Uganda to see the virus.
As we neared the house of our fourth patient for the day, Rose said, “I’m not sure this man is still alive.”
She didn’t say much else. We arrived at the house, and about 4 men and 6 children were outside, including one man who looked quite old and welcomed us with a feeble voice. I figured he was the patient. Since the nurses and patients were all speaking Luganda, I had no idea what was going on, but Rose sent someone inside the house. And old woman came out, and immediately began to sob; she appeared to be explaining something to the nurses. At this point, I knew the patient had died. Then, something unexpected happened: everyone seated around me started making the Sign of the Cross! Confused, I joined in as Rose said a prayer for the man’s soul, then began to lead the Our Father. Though I’d heard of this kind of interaction at PCAU’s update meeting on spirituality, it still shocked me (in a good way) to witness it in person. I can’t imagine this kind of thing happening back home.
We made our way to the next patient, a young woman with HIV and cervical cancer. Rose told me that when they last visited, the woman had been very sick. “If she’s still alive, it’s a miracle,” she told me.
We pulled up in front of the woman’s home. Her mother was seated on a pile of bricks outside of the doorway, and a sister was nearby. “She doesn’t look happy,” Rose said aloud as if to confirm her prediction that the patient had died.
Rose slowly got out of the car as the mother began to cry and explain what had happened. Resty and I followed, and even Aloysius approached the mother – she was so obviously in despair. It took everything I had to hold back tears as I watched the woman cry and cry while Resty attempted to comfort her. “You did everything you could. It was in God’s hands.” Rose stepped back to translate for me…the patient had died as expected. Two days later, her older sister had gone to sleep and had never woken up – her children had found her dead in the morning. The cause? Unknown. The woman was seemingly healthy. But apparently, she had cried so hard and often in the days following her sister’s death, that her family worried it would make her sick…could she have died of heartbreak?
When we got back into the car, Rose informed me that, when their schedule permits, she and Resty visit the families of recently deceased patients to express condolences and provide spiritual support. This action speaks for itself. Remember, these families are not nearby. They’re never “on the way” to something. These women go OUT OF THEIR WAY to do this.
This brings me to my point. As much as I admire Rose and Resty, their dedication is not unique, but somehow common in palliative care providers. It makes sense, too. It takes a special kind of person to dedicate his or her life to the dying. It’s a messy, difficult, complicated, emotionally challenging job. But at the end of the day, it’s an incredibly rewarding one.
We cannot allow the fact that a life can no longer be “saved” to remove that life from our care and consideration. We owe it to our neighbors to help them die peacefully – without the burden of physical, mental, or spiritual anguish.
Remove the mask of packages of tablets and bottles of morphine, and it’s clear that palliative care is not a science. It is a priceless gift of love and compassion from one human being to another who is completely vulnerable and in desperate need of support. How can that NOT be a priority?