Understanding the policy and system dynamics to improve Palliative Care in Lao PDR (UNPAC)

Research question: How can we identify a combination of policies and health strategies that, taking into account the contextual factors and the existing dynamics of the health and social systems in Lao PDR, effectively alleviate the burden of serious health-related suffering (SHS) caused by irreversible conditions? Background: Palliative care is a fundamental right that allows patients with irreversible conditions to die with dignity and without unnecessary suffering. However, there is a massive gap in palliative care provision, with only 14% of those in need receiving it and the demand doubling by 2060. With national governments focusing on extending life and treating communicable conditions, very inexpensive interventions to avoidable suffering – such as the distribution of medical opioids – are often ignored. Health policies and interventions are influenced by the governance rules, affected by the existing capacity of the system, and driven by the history of the health system. Understanding and managing the inherent complexity around the provision of palliative care services is essential to enable health systems to better adapt so that their performance is improved and sustained. Aims and objectives: We aim to estimate the burden and to analyse the dynamics of the social and healthcare system to reduce SHS in people with advanced and irreversible diseases. We will estimate the demand and unmet needs for palliative care (RO1-demand); investigate design and performance of the current palliative health and social care system (RO2 - supply); and integrate the evidence generated in RO1 and RO2 in a participatory design of a systems dynamics model (SDM) (RO3). Methods: We will conduct a transdisciplinary multi-phased mixed-methods research project structured around 4 different studies and a phased approach to develop the SDM. We will estimate the burden of SHS (a proxy for the need of palliative care) among decedents using a novel application of verbal autopsy (Study 1). We will also estimate suffering in non-decedent patients and explore their unmet needs for palliative care (Study 2). On the system side, we will use qualitative methods to understand the barriers and enabler in the patient pathway through the system (Study 4) and the readiness of the public health system to provide palliative care services using a health facility survey (Study 3). Finally, a participatory model building methodology will be used to create a system dynamics model that will capture the inherent complexity of the system and with inputs from patients, families, communities, health professionals, managers and decision makers. Timelines for delivery: The project will span over 36 months and will be structured around the preparatory activities in the first 9 months; data collection and analysis of the studies over 12 months between year 1 and 2; and the development and use of the SDM in the last 18 months of the project. Anticipated impact and dissemination: By the end of the research project and for the first time in Lao PDR, we will have an estimate of the burden of SHS in the country, the capacity of the health, social and political system to tackle them and the current gap in palliative care services to alleviate SHS. We will also provide decision makers with a policy relevant decision support tool that will enable them to evaluate the impact of strategic and operational policies and interventions to reduce the burden of SHS in LMICs.