Mobilizing resources to improve end of life care at home

Patient at home. Photo: © Emira Dropic

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).

Figure 1: Areas of support to consider to improve quality of life of terminally ill patients

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.

Project to improve care and support for terminally ill patients in Bosnia and Herzegovina (BiH)

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.

• First, there appeared to be a lack of information provided to patients about their condition and the existing available support, resulting in feelings of helplessness and lack of control over their condition.
• Second, patients described the need of better symptom management by health care providers (essentially for pain and for signs of anxiety/depression), often leading them to take their own decisions and self-medicate.
• Third, they often expressed feelings of isolation with lack of attention and consideration, overreliance on their family and stigma. Finally, many felt that their care givers were exhausted. These findings emphasized that there was a wide gap between what patients and their relatives expected from end-of-life care and support and the services provided by the system in place at the time of the initial assessment (Aebischer S. et al, 2018).
  

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.

• First, we set up an inter-institutional network of providers under the responsibility of the municipality and with the approval from the Ministry of Health and Social Welfare. Each institution or partner organisation wrote a letter of intent to participate in the network.

• Second, a services’ coordination function was defined so that each identified person could benefit from the available services.

• Third, we established a suitable institutional, professional and administrative work environment by ensuring the necessary tools and equipment for home visits to become operational:

(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.

Figure 2: Interprofessional patient’s needs assessment tool

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.

Not simple copy and paste: The obvious need for a tailored contextual approach

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:

• the set-up of a coordination mechanism for all actors;
• the need for better symptom management and access to opioids;
• a dedicated scheme for the care of destitute patient;
• availability of transport means from home to PHCC and to secondary and tertiary health facilities.
  

These priorities were addressed through an inter-institutional collaboration under the guidance of the municipality and the Ministry of Health by:

• the development of de-centralised prescription and delivery of opioids;
• the implementation of a dedicated transport solution for the patients to the PHCC or hospital;
• the delivery of trainings for volunteers;
• the adoption of tools and processes previously developped for the municipality of Doboj.

Inter-institutional collaboration in Orasje: signing of collaboration agreement. Photo: © Emira Dropic

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 1^st quarter of 2020.

Old couple, husband holds wife. Photo: © Emira Dropic

The postive impact of collaboratiave work

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.

References

• Aebischer Perone S. Nikolic R., Lazic R, Dropic E, Vogel T, Lab B, Lachat S, Hudelson P, Matis C, Pautex S, Chappuis F. Addressing the needs of terminally-ill patients in Bosnia-Herzegovina: patient’s perceptions and expectations. BMC Palliative Care (2018) 17:123 https://doi.org/10.1186/s12904-018-0377-2
• Pirnazarova G, Matis C, Loutan L, Heller O, Grivel A, Guisado H. Caring for palliative patients: The 9 symptoms booklet. 2015. Geneva university hospitals
• WHO 2016. Planning and implementing palliative care services: a guide for programme managers. https://apps.who.int/iris/bitstream/handle/10665/250584/9789241565417-eng.pdf?sequence=1
• WHO 2004. Palliative Care: symptom management and end of life care. Integrated management of adolescent and adult illness. Interim guidelines for first level facility health workers. http://apps.who.int/iris/bitstream/10665/68535/4/WHO_CDS_IMAI_2004.4.pdf
• Zulian G., Pautex S. Aide-mémoire de soins palliatifs destiné aux soignants. Programme des soins palliatifs. https://www.hug-ge.ch/soins-palliatifs-aide-memoire-destine-aux-soignants. Geneva university hospitals. 2007