Conference Agenda

o Background

There is a growing movement toward citizen led end of life, death and bereavement care. This includes the reclaiming of personal rites and rituals alongside complimentary palliative care and funeral providers. A number of social changes are influencing this change in Australia, including the need to develop models in under-served communities and seeing this care as a social justice issue not just a medical one.

o Objectives

Many of us across end of life care and funeral care. Understand the value of home funeral. The objective of this presentation is to show people, through pictures and stories, how home funerals work and the difference that they can make to the grief and bereavement of those who live on.

o Design

In this multi-media presentation I will take people on a photographic journey of a number of deaths. Each death was different; suicide, sudden and traumatic death, nursed dying at home, old age – they all come with their stories and lessons and ultimately, they show people what is possible for a family to do when a person is dying.

o Methods

A family conducted different versions of home funerals, incorporating their extended family and community. Those deaths were documented in pictures and are told from an ethnographic perspective.

o Results

Through the experience of a number of deaths, this presentation demonstrates the very real benefits to the bereaved, that can be gained from people caring for their dead. By sharing personal experiences and reflections, this presentation works to skill people in increased death literacy and expand peoples knowledge of what is possible in community and family based approaches to end of life.

o Conclusion

This presentation explores the impact of death education and advocacy in Australia and provides an argument against the silo-ing of care at end of life. It argues that continuous care can make these last acts of service have the potential to fundamentally change the grief and bereavement experience for people and their families and communities.

Background

The bereavement companion program was a pragmatic response to the need for bereavement support in Kerala, India, during the covid 19 pandemic. The program was developed as an international collaboration with a core interdisciplinary team and then with bereaved people in Kerala who volunteered to support the design of the program. Focus groups were run via Zoom with translation, and this process supported the initial design of the program and then the pilot program. Since the online pilot program in 2021, 363 people have participated online (nine programs) and in person (five programs) in India, Bangladesh, Thailand, Philippines and Australia. A supporting manual and other resources have been developed and translated into multiple languages. This presentation provides an overview of the outcomes of a 5-country evaluation in 2023, the lessons learnt and the benefits of international collaborations.

Objectives: To examine the effectiveness of a community grief literacy program. It was proposed that participants would gain knowledge and confidence from the program and that the program would provide a safe space for community members to reflect on their own grief experiences and the experiences of others, equipping them to be ‘companions’ in grief to friends, family, and neighbours.

Design: Evaluation of a grief literacy program for community members.

Methods: All program participants across 5 countries in 2023 were invited via direct link or QR-Code to participate in an online survey with both Likert style and open-ended questions. The survey was confidential, and participation was voluntary. The survey had 25 questions, including demographics, questions about confidence and knowledge and the program goals.

Results:

A total of 169 participants completed the program in 2023; 107 (69 female, 33 male) from 5 countries completed the evaluation survey (63% response rate). Paired sample t-tests revealed a significant difference in self-reported confidence and grief-related knowledge on self-reported pre-post scores. The effect size was large (Cohen’s d). Over 70-80% of participants reported the workshop provided a space to reflect on their own grief, it helped normalise grief support and 83% reported it improved their grief literacy.

Conclusion:

The grief companion program improves knowledge and builds confidence in response to grief in the community. The evaluation will be used for continual improvement and to share the program in other countries and regions.

Background

Dealing with existential questions in the face of death is a constitutive part of palliative care. To make space for the topic of death in everyday life conversations, we can meanwhile rely on a repertoire of concrete practices: e.g. last aid courses, death cafés, and practices from spiritual care. However, Philosophical practices are not considered—which marks the beginning of our research interest. Philosophical practice is a non-elitist approach to doing philosophy and enables people—in the Socratic tradition—to reflect on their (existential) everyday life experiences in a philosophical way. In our ongoing research project „Philosophical Practice in Palliative Care and Hospice Work“, we seek to close this gap by practically investigating the opportunities and limits of philosophical practice for the development of death literacy.

Design

In this contribution we will a) briefly introduce philosophical practice, b) focus on the evaluation and analysis of a series of philosophical group events in the palliative care context and present (interim) results, c) draw conclusions with regard to the concept and dimensions of death literacy.

Methods

In the empirical part of this contribution, we conduct a qualitative document analysis of protocols and personal notes provided by the involved philosophical practitioners, complemented by group discussion with them and participants’ feedback. We combine this analysis with philosophical analysis, interpreting the results regarding implications for the concept and dimensions of "death literacy" itself.

Results

Philosophical practice can make important contributions to developing death literacy according to its known dimensions. Moreover, by deepening and critically questioning what is self-evident within the social and personal life-philosophies we pursue, philosophical practice adds to the development of the concept of “death literacy” itself.

Practical conclusions

We give insight into how philosophical practice can be applied in end-of-life care in communities and everyday life.

Funding

This research is funded by the Austrian Science Fund (FWF) P 35627-G.

Background: For countries that have an ageing population with increasingly complex needs at the end of life at a time when the financial cost of providing end of life care is increasing, there is an urgent need for innovative ways of providing community palliative care to be developed. End of life doulas provide non-medical practical, emotional, and (if desired) spiritual support to individuals at the end of life and those important to them.

Objectives: In the UK a number of forward-thinking National Health Service (NHS) commissioning bodies have piloted the use of end of life doulas alongside existing community palliative care services with the objective of assessing whether such an approach can reduce hospital admissions in the last weeks of life, improve the quality of advance care planning, increase the percentage of patients dying in their preferred place of death, improve informal carer wellbeing and reduce pressure on existing health and social care services.

Design: Two pilot projects in Leeds and London, UK, are being evaluated using a mixed-methods approach

Methods: Evaluation involves the use of focus groups, semi-structured interviews, quantitative data collection relating to number of hospital admissions, advance care plans and preferred place of death, and an online survey for friends and relatives of the patient. One project is using contribution analysis which includes qualitative data collection from end of life doulas working on the project.

Results: Evaluation is in progress however early results suggest that end of life doula support can result in lower rates of hospital admission in the last weeks of life and improved informal carer wellbeing. There is also evidence that the end of life doula service reduces pressure in other areas of the health service for example community assessment teams and General Practitioners (GPs). Full evaluation results will be available by October 2024.

Conclusions: The use of end of life doulas to work alongside existing health and social care services can improve the quality of care for patients dying in the community, improve informal carer wellbeing and have reciprocal benefits for end of life doula and existing healthcare services. If commissioning bodies can surpass risk aversion to trial end of life doula approaches in the community this can help achieve the aims shared by all palliative care services of providing end of life care which aligns with the patient’s wishes.

Background: In Argentina, only one in ten people needing palliative care (PC) receive it. The (QELCA©) Programme (Quality End of Life Care for All) was designed to support the development of skills and confidence in those unfamiliar with PC, aiming to overcome institutional, care, and cultural barriers.

Objectives: In two public hospitals in Buenos Aires, Argentina, the (QELCA©) programme aimed to promote attitudes and competencies towards holistic care, recognising the suffering linked to health and illness. It focused on establishing a comprehensive approach, defining key aspects, and planning action plans to improve care quality.

Design: An Argentinian NGO, a leader in PC education in the region, in alliance with a British Hospice, implemented the (QELCA©) to increase the number of institutions that can successfully implement a culture of comprehensive and active quality care, according to the international standards defined by the WHO.

Methods: A team of PC experts implemented a coaching process to rethink the reality of each participant and identify what competencies they need to develop. The Muñiz Hospital of Infectious Diseases (2020) and the San Fernando General Hospital (2022) participated in 5 face-to-face days of 4 hours/day, using the Action Learning Sessions; 12 months of subsequent virtual monitoring by the experts and 12 meetings via Zoom. It combined highly interactive, classroom-facilitated learning and practical observation.

Results: Two hospital-specific PC multidisciplinary teams emerged from the intervention focused on communication, a comprehensive approach to patient families, understanding the unit of care as a patient family, interdisciplinary work, and decision-making. The changes produced included creating a comprehensive and interdisciplinary care group with its own identity in both hospitals, improved communication within the team and with the patient-family, a comprehensive approach to patients, and improved decision-making processes related to end-of-life situations.

Conclusion: The recent experience of implementing the (QELCA©) in two Argentinian public hospitals is a convincing demonstration of the programme's benefit to our environment. Key factors for the success of the implementation included identifying people who commit to carrying out an institutional project, the continuity of meetings, and the importance of monitoring at a personal level and not only in the group (action plan) in this context.