1. End of life care and support in Doboj municipality, Bosnia-Herzegovina (BiH): design of a patient centered inter-professional intervention Authors: Aebischer Perone S., Vogel T., Lab B., Dropic E
Introduction
In Bosnia and Herzegovina terminally ill patients are often unheard and their needs rarely covered. Early 2016 the management of a primary care center in Doboj approached a local partner (Fondacija fami) and the Geneva university hospitals to improve the services to terminally ill patients living at home. In order to design an acceptable, affordable and sustainable solution we engaged patients, health and non health actors. The study was jointly conducted by the three partners.
Method
We conducted individual semi-structured interviews with 62 purposively recruited patients to explore their needs and expectations. Data were coded in Epi-Info 7 and analysed using an inductive thematic approach. Inter-professional focus groups including relevant health and non health actors of the community explored barriers and resources.
Results
Information provided to patients about their condition and the existing available support may be lacking, resulting in feelings of helplessness and lack of control over their health.
Patients describe the need of better symptom management by health providers often leading them to take their own decisions and self-medication.
Patients often express feelings of isolation with lack of attention and consideration, important dependency and stigma.
Many experience exhaustion of care givers.
Based on the results, inter-professional working groups designed the following care model :
Set-up and coordination of an inter-professional network (health providers, social workers, religious leaders, volunteers, patient associations) providing culturally appropriate information and care based on informed decisions.
Care coordinators can play a pivotal role in engaging patients by giving them voice and supporting collaboration across the entire care team, coordinate training, supervision, psycho-social and spiritual support to all involved.
Conclusions
Our findings emphasize that there is a wide gap in what people want in end-of-life care and the treatments they receive. The study shows the importance of designing a coordinated inter-professional / institutional approach and services tailored to patient preferences and needs. Treatment support, including psychosocial, spiritual support and educational support to terminally ill patients, their families and to care providers are essential.