I no longer remember his name, but I still remember his face, his tears, and his pain, and his mother kneeling before me pleading, “Give something to let him sleep and wake no more.”
She was speaking in Kinyarwanda, our mother tongue: “Muganga, mbabarira,” she implored, “Please, I beg you.”
It was meeting her, the mother of a 24-year old patient diagnosed with Hepatocellular Carcinoma and dying in pain, that made me realize the crucial but neglected role family members play in palliative care and End of Life care.
“Safari” means “Journey” in Swahili, a local language spoken in East African countries. This project will travel across Rwanda exploring the nature and character of suffering as experienced by End of Life Care patients and by the family members who are on the journey alongside their loved ones.
Safari explores different narratives, gleaned from 500 to 800 family members meetings held between 2009 and 2019. It describes the meaning and character of suffering among those families, the language they choose to use, and their many, varied experiences of death and dying.
Publication: The book is expected to be published between early-mild 2021
(Photo: Chris Swagga)