‘We had to be there, Present to Help Him’: Local Evidence on the Feeling of Safety in End-of-Life Care in Togo

Abstract

For patients with diabetes and cancer at the end-of-life and their families, the safety sought in end-of-life care leads them to opt for home care. In developing countries where palliative care is not yet effectively integrated into public health policies, factors such as long distances to hospital referrals, lack of adequate infrastructure and shortage of specialised health professionals create a sense of insecurity for people seeking end-of-life care. The present study explored the factors that reinforce the feeling of security and insecurity of family members who have opted to accompany their relatives with diabetes and/or advanced cancer at the end-of-life at home in Togo. This was an ethnographic approach based on observations and in-depth semi-structured interviews with people with the following characteristics: family members (bereaved or not) with experience of caring for a patient with diabetes and cancer at home at the end-of-life. The data were analysed using content and thematic analysis. This was done to identify categories and subcategories using the qualitative analysis software Nvivo12. The results show that of the ten relatives interviewed, eight had lived with the patient. Factors contributing to the feeling of security in the accompaniment of end-of-life care at home by the family members were, among others: ‘Informal support from health-care professionals,’ ‘social support’ from relatives and finally, attitudes and predispositions of the family members (presence and availability to the patient, predisposition to respect the patient’s wishes at the place of end-of-life care and predisposition to talk about death with the dying person). The ‘informal support of health-care professionals’, the ‘perception of the home as a safe space for end-of-life care’ and the ‘social support’ of family members contributed most to the feeling of safety among family members accompanying their diabetic and cancer patient family members at the end-of-life at home in Togo. Therefore, palliative and end-of-life care must be rethought in public health policies in Togo to orientate this care toward the home while providing families/caregivers with the knowledge and tools necessary to strengthen care.