End-of-Life Decision Making Among Cancer Patients in Rwanda: A Qualitative Study

Abstract

Context: The understanding of death and dying in Rwanda has changed from the pre-colonial period. Previously considered a natural phenomenon and an accomplishment, but after colonialism, death has become a source of fear. Today, cancer patients suffer in many ways: the disease has frightening meanings and is stigmatized in the community, it often causes pain and other distressing symptoms. Effective end-of-life care rarely is accessible in resource poor settings like Rwanda. The contributions of family members at end-of-life are thus crucial in caring and in advanced care planning. Current models for advanced care planning and end-of-life care decision-making have grown out of the Euro-American clinical and cultural experience. It is important to create a locally relevant and people-centered model for end-of-life care that ensures the dignity and well-being of patients and is in keeping with the priorities and values of local Rwandans. Objectives: To explore and to examine end-of-life care experiences of oncology patients in end-of-life care in Rwanda rural and urban area. Methods: Overall 29 key informant interviews were conducted. In order to preserve the highest quality of data, the key informant interviews were audio recorded, transcribed verbatim and translated from Kinyarwanda to English. The transcripts were loaded onto Atlas.ti version 7.5.7 from where data was analyzed. Results: The main categories came up from the results were (1) the historical shift in the meaning of death influenced patients’ end-of-life perception, (2) the construction of death from cancer as a” bad death” and (3) the socio-cultural challenges influencing end-of-life care of cancer patients in Rwanda. The perception of death changed from the pre-colonial to the post-colonial period affected the dying process of patients and minimized the responsibility of healthcare providers to offer end-of-life care. Cancer is considered a” bad death” because of stigma and the perception of the disease itself. The end-of-life care is challenging due to the stigma surrounded the disease but also the difficulty from patients, family caregivers, healthcare providers to start talking about end-of-life care. There is no a clear advanced care plan when patients are discharged from hospital. Conclusion: To improve quality of care, we must train the personnel, provide access to treatment, build infrastructure, and integrate cancer management in the public system are crucial to the quality of care. But ignoring the social context, the cultural values, the perception of care delivery from the patients and their families is a cruel injustice to the cancer patients and may cause them to experience a “bad death”.