"Kusa Ikivi": Death as an Accomplishment and End-of-Life Experience of Cancer Patients in Rwanda.

Abstract

In present-day Rwanda, despite efforts of the Ministry of Health to implement palliative care, end-of-life care, and death are seldom discussed, and many patients die suffering or alone. We qualitatively studied end-of-life traditions and attitudes toward end-of-life care in present-day Rwanda that might inform optimization of palliative and end-of-life care. We conducted qualitative interviews with 29 key informants that were audio recorded, transcribed, translated from Kinyarwanda to English, and analyzed. We also observed patients, family members, and caregivers during the interviews. Three themes emerged from the data analysis: (1) Colonization introduced new meaning and new fear into the experience of dying, (2) There is a perception of death from cancer as a "bad death," and (3) Traditional values can and should be reconciled with modern medicine to optimize end-of-life care for Rwandans. The meaning of death and dying in Rwanda has changed radically since the precolonial period. Previously accepted and celebrated in meaningful family gatherings as an accomplishment, death began to evoke fear during colonization when Christianity was imposed. This transition, compounded by the trauma of the 1994 genocide against the Tutsi, appears to have complicated end-of-life care. Optimal care requires not only medical management of disease and symptoms but attention to sociocultural values that promote wellbeing among patients and family members.