Perspectives of municipalities on people living with incurable illness, palliative care and the end of life: A case study research
Trudy Schutter, Ian Koper, Marieke Groot, Kris Vissers, Jeroen HasselaarBackground
Increasing attention is being paid to community-based approaches to living with incurable illness, caregiving, dying, death, and bereavement. However, the role of local authorities and welfare organisations in addressing these themes remains unclear.
Objectives
This study aims to explore the roles of Dutch municipalities and welfare organisations in supporting individuals living with incurable and life-limiting illness and their caregivers, and to examine the extent to which issues related to living with incurable illness, caregiving, dying, death, and bereavement ared addressed in local policy and practice.
Design
A multiple case study was conducted across three cases in the Netherlands, each comprising a local authority (municipality), welfare organisation(s), and palliative care providers.
Methods
Data were collected through semi-structured, in-depth interviews and analysis of local and regional policy documents and online information. In total, 27 professionals participated, including municipal civil servants, social professionals from welfare organisations, and palliative care professionals. Additionally, case specific policy documents were analysed.
Results
Municipalities did not explicitly address palliative care and related end-of-life themes in policy and did not show designated responsibility. These topics were mainly embedded within broader ageing policy and addressed reactively. Social professionals provided support from a non-medical, person-centred perspective, focusing on everyday life and informal networks. Cross-domain collaboration occurred but varied between cases.
Conclusion
Palliative care and related end-of-life themes are not structurally embedded within municipalities and welfare organisations but are addressed indirectly and to varying degrees at the local level. Greater municipal involvement, for example in raising societal awareness and increasing death literacy, could strengthen community-based palliative care.