Building a narrative on how people approach death and Dying. The experience of Getxo Zurekin.

Abstract

Introduction: In 2017, the Fundacion Doblesonrisa launched the “All with you” project in Getxo, with the aim of raising awareness and mobilising people on the issue of compassion and palliative care. Description of implemented practice: The Getxo Compassionate Community Project started by mapping the exisiting social and professional networks (from health/ social care centres to schools, residential homes, associations, third sector organisations, local businesses.) and offering training sessions for carers and the public. It also designed collaboratively and prototyped a community listening platform focused on better understanding the social dynamics and perceptions that local citizens and institutions have on death, illness and frailty. Getxo Zurekin has designed and prototyped an innovative approach to community responses, which could be shared and adapted to other municipalities looking for change in integrated care. This “open innovation process” includes a listening phase structured around the collection of existing narratives (recorded semi-structured interviews to relevant stakeholders), identification of the most significant and a collective interpretation of these perceptions, combined with co-design sessions to identify innovative solutions. Aim and theory of change: The project aims to ensure that everyone experiences a “good” death. It understands: (i) the current costs of end-of-life care are unacceptably high; (ii) it is necessary to align the incentives of institutional, private and community agents (iii) the community is the strongest lever for transforming health care organisations. Therefore, in order to design new solutions, innovative approaches need to better understand the existing social perceptions and belief systems on what a good death is. Targeted Population: Getxo has a population of 80,000 people and at least 200 people are susceptible to receiving integrated palliative care. Conclusions: Findings are that community perceptions about the way people are experiencing death in Getxo are negative. Current public and private services are not capable of supporting families. Local citizens, professionals and community organizations demand the generation of new collaborative initiatives to overcome traditional public/private divide and prototyping new professional profiles reinforcing existing community responses to this need. Lessons learned: This research has given insight into the cultural and social dynamics that are conditioning the real impact of end of life policies and community responses. It has also identified a new professional profile described as a “community broker” that could provide the necessary connection between existing public services and the emerging family/community responses for a more innovative end of life care.

Keywords

• integrated
• palliative
• care
• compassion
• communities