Addressing the needs of terminally-ill patients in Bosnia-Herzegovina: patients’ perceptions and expectations

BACKGROUND: Many terminally ill patients in Bosnia-Herzegovina (BiH) fail to receive needed medical attention and social support. In 2016 a primary healthcare centreer (PHCC) in Doboj (BiH) requested the methodological and technical support of a local partner (Fondacija fami) and the Geneva University Hospitals to address the needs of terminally ill patients living at home. In order to design acceptable, affordable and sustainable solutions, we involved patients and their families in exploring needs, barriers and available resources. METHODS: We conducted interviews with 62 purposely selected patients using a semi-structured interview guide designed to elicit patients’ experiences, needs and expectations. Both qualitative and quantitative analyses were conducted, using an inductive thematic approach. RESULTS: While patients were aware that their illnesses were incurable, they were poorly informed about medical and social support resources available to them. Family members appeared to be patients’ main source of support, and often suffered from exhaustion and financial strain. Patients expressed feelings of helplessness and lack of control over their health. They wanted more support from health professionals for pain and other symptom management, as well as for anxiety and depression. Patients who were bedridden or with reduced mobility expressed strong feelings of loneliness, social exclusion, and stigma from community members and – occasionally - from health workers. CONCLUSIONS: Our findings suggest a wide gap between patients’ end-of-life care needs and existing services. In order to address the medical, psychological and social needs of terminally ill patients, a multi-pronged approach is called for, including not only better symptom management through training of health professionals and improved access to medication and equipment, but also a coordinated inter-professional, inter-institutional and multi-stakeholder effort aimed at offering comprehensive medical, psycho-social, educational and spiritual support. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12904-018-0377-2) contains supplementary material, which is available to authorized users.