Author: Racheal Mkuni
He was six years old and already diagnosed with anal cancer when I met him at our local clinic. With no specialists or other infrastructure available in Zambia at the time, our little clinic became his home for the next five months.
From early on, there was an upspoken understanding in the ward that he was going to die soon and that there was little point in investing greatly in his care. Resources were scarce and everyone was overwhelmed; yet I couldn’t simply walk away from him.
Our clinic had no palliative care team nor protocols, but only a ward, a dying child, and nurses doing their best. Across much of sub-Saharan Africa, palliative care is not delivered by specialist teams, but improvised quietly by compassionate nurses who are often untrained and unsupported.
He decided I was his person
Overtime, he began to trust me. On my days off, he refused to eat. His mother would come looking for me because he cried when another nurse tried to bathe him or inject him.
He was a six-year old child, in pain, in a ward that had given up on him. He decided that I was his person, made me a huge part of his world, and I never took that for granted. I didn’t know how to label our relationship as there was no place in our documentation to record “This nurse is this child’s safe person, do not rotate her without careful thought”. All I wanted was to make sure that he was not alone, even though I couldn’t take away his pain and illness.
Not skill. Just the fact of not rushing past his pain
His wound care was one of the hardest parts. We had no morphine and little access to adequate pain relief. What I did have was time. Some days I spent over two hours dressing his wounds, talking to him throughout to explain every step and acknowledge his pain rather that rushing through.
Looking back, I believe that acknowledgement built our trust. Today, with the knowledge gained through palliative care training, I know I would have advocated for regular paracetamol and ibuprofen, timed an hour before dressing changes for some relief.
As his condition worsened, he lost the ability to speak. His world became smaller, but every time I came to his bedside, he smiled. I can still see that smile.
A vigil. A prayer. A refusal to let him leave alone
I stayed by his bedside for the last 48 hours of his life.
While his exhausted family slept against the wall I checked his feeds, repositioned him, monitored his breathing, and spoke to him even when he stopped responding. I only hope that he heard me.
Every act felt sacred – setting the bedsheet, repositioning his body, checking his tube. There was no protocol for what I was doing. No checklist that included ‘Sit with a dying child through the night’ or ‘Witness’. I was not merely monitoring him; I was bearing witness, ensuring that he did not pass through the most profound moment of his life alone.
We are allowed to grieve
When he died, I saw his chest rise one final time and then become still.
I cried in front of my colleagues, in a community where nurses are expected to remain composed. I took two months of leave afterwards.
Months later, his mother returned to tell me that it mattered that her son had been seen and cared for. She now brings her daughter for regular cancer screening. The care did not end with his death.
Years later, I often wonder what would have been different had we received palliative care training earlier. Through REACH Nurses by Sunflower Children’s Network, I now better understand what he had experienced, rather than relying on instinct alone. My colleagues and I would have felt more confident caring for him, even when cure was not possible.
Global reports describe palliative care gaps in numbers, but behind every statistic are the lived experiences of children, their families and healthcare providers. Nurses practice palliative care every day – often without morphine, specialist support, or recognition. We carry grief we are rarely permitted to acknowledge. Behind these numbers are nurses who stayed, improvised, grieved, and returned to work the next day. Their stories matter too.
Let us support and empower nurses so that no one has to face these moments alone.
For me, he was a six-year-old child who had lost almost everything, yet smiled whenever I entered the room.
That smile is one I will carry with me for the rest of my life.
Racheal Mkuni is a Registered Nurse based in Lusaka, Zambia, and a participant in the Introductory Course in Paediatric Palliative Care Nursing, REACH Nurses, delivered through the Sunflower Children’s Network, an initiative of Two Worlds Cancer Collaboration, in partnership with the International Children’s Palliative Care Network (ICPCN) and the Global Palliative Nursing Network (GPNN).
This reflection was recorded by Anu Savio Thelly and Archana Ganesh to amplify the voices of nurses who carry such stories in silence and to make one thing clear: structured palliative care education, peer support, and psychosocial debriefing are not luxuries in low-resource settings. They are necessities. The experiential knowledge of nurses like Racheal is not peripheral to palliative care. It is its foundation, and they deserve to be heard, supported, and built upon.
