- Austausch & Vernetzung
- Wissen & Lernen
- Advocacy
- Unsere Themen
Von Sigiriya Aebischer Perone, Emira Dropic, Dejan Sredic, Thomas Vogel, Bruno Lab, Caroline Matis, David Beran, Sophie Pautex and François Chappuis
Worldwide, many patients at the end of their life express a preference for spending their last days at home. As in many other low and middle-income countries, the current situation in Bosnia-Herzegovina makes it challenging for such a desire to be a reality. To better respond to the needs and expectations of terminally ill patients, we assessed the needs they had at the end of their life, trained health care workers and volunteers, and developed a coordination mechanism to mobilize available resources around the individual. We wish to present our participative approach, share the tools we developed, and the lessons learned from our experience in two pilot municipalities.
The management of the Primary Health Care Center (PHCC) of the municipality of Doboj, Republika Srpska, Bosnia-Herzegovina (BiH) approached the Fondacija fami, a local non-governmental organisation, and the Geneva University Hospitals (HUG) in 2016 to improve the provision and the quality of services to terminally ill individuals living at home. Thereafter, a project proposal was submitted to the HUG for funding.
As in most transition countries, terminally ill individuals are often unheard, and their needs are rarely covered by existing health or social services
As in most transition countries, terminally ill individuals are often unheard, and their needs are rarely covered by existing health or social services. Collecting reliable information and making sure that care providers know what is important for the individual and their families (Figure 1) is a basis to initiate change to support new efforts to better address the needs of terminally ill individuals (WHO 2016).
Therefore, to design an acceptable, affordable and sustainable solution, we engaged people and their families allowing us to explore the current barriers and existing useful resources.
The three partners (PHCC, Fondacija fami and HUG) conducted the exploratory, preparatory, implementation and replication phases together:
Exploratory phase (phase I): Identifying lack of information, symptom management and attention
During the exploratory phase (phase I) we used individual semi-structured interviews with 62 patients to collect qualitative information about their experience and to assess their perceived needs and expectations. Participants were purposively recruited to represent the spectrum of terminally ill individuals and to ensure that age and gender distribution was representative of the population registered at the PHCC in Doboj. The results showed the following key issues to be addressed.
Preparatoy phase (phase II): Mapping of local resources and Identification of potential barriers
During the preparatory phase (phase II) we approached all relevant actors in Doboj municipality and the region. Thereafter, we mapped local resources and identified services to be provided as well as potential barriers to be lifted through focus group discussions. Based on the expectations collected from the patients’ interviews (phase I) and the propositions formulated during the focus group discussions (beginning of phase II) we facilitated several inter-professional and inter-institutional meetings, inviting representatives of the Municipality, Ministry of Health and Social Welfare, health insurance fund, health professionals, patient’s associations, NGOs, the Red Cross, social services, religious leaders, to participate as strategic partners. Together, they identified and designed a comprehensive patient centred model for end of life care and support to be rapidly implemented.
Implementation phase (phase III): Establishing of an integrated network of services
The implementation of an integrated network of services for terminally ill individuals (phase III) was divided in several steps.
(i) we proposed a shared care and support plan including medical, social and spiritual needs of the patients to reach what we called a “quality of life agreement” (Figure 2); (ii) we adapted existing symptom management tools for end of life care (WHO 2004, Zulian 2007, Pirnazarova 2015); (iii) in collaboration with the PHCC management, we revised the job description for nurses providing care at home; (iv) delivered inter-professional trainings for health workers; (v) provided psychological support to all actors involved through team meetings, and individual counselling.
Finally, we had the opportunity to replicate the same experience in a municipality of the Federation of Bosnia-Herzegovina (FBiH), as its Ministry of Health expressed the wish to have the same approach applied in the municipality of Orasje.
This second initiative allowed us to identify similarities and differences between two municipalities of the same country, highlighting the fact that a tailored contextual approach needs to be priviledged over a simple copy and paste.
In Orajse, the identified priorities were:
These priorities were addressed through an inter-institutional collaboration under the guidance of the municipality and the Ministry of Health by:
Between April and September 2019 in Doboj 1827 home visits were provided by 12 nurses for terminally ill patients and, during the same period, 232 visits were performed by 10 nurses in Orasje (beginning of the project, which started later).
Finally, and to cope with the current situation, the pre-established network and inter-professional collaboration and coordination allowed both municipalities to respond to the needs not only of end of life care patients but also to the needs of other vulnerable groups hit by the Covid-19 pandemic that emerged during the 1st quarter of 2020.
Both municipalities started to implement a person centered inter-professional and inter-institutional coordination mechanism which showed its importance to respond to the needs and expectations of terminally-ill patients.
To support the coordination and to assign respective objectives to the health and social services providers, we developed a common assessment tool, exploring the medical, social, spiritual and administrative needs of the beneficiaries. The results then led to individual and agreed care and support plans setting joint clinical and social objectives.
The supportive network surrounding the patient is the starting point and helps the organisation of patient centered end of life care and support services at home. Our project shows the positive impact of collaborative work that engages communities, mobilizes existing resources, addresses a shared concern and aiming at an acceptable, affordable and sustainable response.
The Division of Tropical and Humanitarian Medicine (DTHM) at the Geneva University Hospitals (HUG), established in 2007 is a rare example of a division within a public hospital dedicated to improving health globally. The staff of the DTHM comprises medical doctors, nurses, public health specialists, health economists and project managers. Currently the DTHM has ongoing projects in close to 20 countries. The DTHM provides technical support to a variety of humanitarian and development actors by serving as a resource or a link to further expertise within the HUG or the University of Geneva. Finally, the DTHM is a WHO Collaborating Centre for Humanitarian Medicine and Disaster Management.
Le Service de médecine tropicale et humanitaire (SMTH) des Hôpitaux universitaires de Genève (HUG) a été crée en 2007. Il constitue un exemple rare de dévouement d'un hôpital public à l'amélioration de la santé dans le monde. Les collaborateur.trice.s du SMTH sont issu.e.s de nombreuses disciplines : médecine, soins infirmiers, santé publique, économie de la santé et gestion de projets. A l'heure actuelle, les collaborateur.trice.s. du SMTH sont actifs sur des projets humanitaires et/ou de coopération dans une vingtaine de pays, pour lesquels ils/elles fournissent de l'assistance technique ou des liens vers une expertise pointue des HUG ou de l'Université de Genève. Enfin, le SMTH est Centre collaborateur de l'OMS pour la médecine humanitaire et la gestion de catastrophe.
