Dying and Death in Some Roma Communities: Ethical Challenges

Gabriel Roman, Rodica Gramma, Angela Enache, Andrada Pârvu, Beatrice Ioan, Ştefana Maria Moisa, Silvia Dumitraş, Radu Chirita

The Roma people have specific values, therefore their views and beliefs about illness, dying and death are important to be known for health care providers caring for members of this community. The aim of this qualitative study based on 48 semi-structured interviews with Roma patients and caregivers in communities in two regions of Romania was to examine their selfdescribed behaviors and practices, their experiences and perceptions of illness, dying and death. Five more important themes about the Roma people facing dying and death have been identified: (1) The perception of illness in the community as reason for shame and the isolation that results from this, as well as the tendency for Roma people to take this on in their self image; (2) The importance of the family as the major support for the ill/dying individual, including the social requirement that family gather when someone is ill/dying; (3) The belief that the patient should not be told his/her diagnosis for fear it will harm him/her and that the family should be informed of the diagnosis as the main decision maker regarding medical treatment; (4) The reluctance of the Roma to decide on stopping life prolonging treatment; (5) The view of death as 'impure'. These results can be useful for health care providers working with members of the Roma community. By paying attention to and respecting the Roma patients' values, spirituality, and relationship dynamics, the medical staff can provide the most suitable healthcare by respecting the patients' wishes and expectations.