Report from the Fourth International Last Aid Conference: Last Aid and networks in community palliative care

Abstract

The Fourth International Last Aid Conference was held from 4th to 6th September 2024 in Cologne, Germany. Seventy-three participants from 16 different countries and nationalities participated in the Fourth International Last Aid conference in the Mildred Scheel Academy and the Department of Palliative Medicine at the University Hospital of Cologne, Germany. The main topics of the conference were experiences with Last Aid Courses, research on public palliative care education (PPCE) and networks in community palliative care from different countries. The speakers from different countries around the world presented experiences with networking in community care, PPCE and lessons learned from the implementation of Last Aid Courses and different course formats in different countries. The contribution of research and the past and future work of the Last Aid International Research Group (LARGI) for the development of Last Aid was presented and discussed. This report provides an overview of the conference topics, the presentations by international experts from around the world and the most important results and implications.

Since the introduction of the first Last Aid Courses in Norway, Germany and Denmark in 2014/2015 many countries have joined the Last Aid Movement^1,2 that now includes 23 participating countries from Europe, Canada, Brazil, Australia and Singapore. The Fourth International Last Aid Conference was held from the 4th to the 6th September 2024 in Cologne, Germany.

Preconference meeting of the International Last Aid working group and German Last Aid Symposium

On 4th September, a preconference meeting of the International Last Aid working group took place in the Department of Palliative Medicine, University Hospital of Cologne, Germany, to discuss the curriculum and slide set for the international Last Aid Course for the public. The group reached consensus on the new curriculum and slide presentation with some changes of the existing slide presentation. The subtitle of the Last Aid Course was expanded, and the full title is now ‘Last Aid – Empowering people to support each other during serious illness, dying, death and grief’. The group found it important to highlight empowering of people and the whole period from serious illness to grief as experiences by relatives, friends and others. In addition, the idea that end-of-life care is everyones responsibility and the 95% rule as described by Kellehear ³ were included in the presentation as well as a new slide about possible positive experiences in connection to death and dying. The members of the international Last Aid working group wanted to make clear that the encounter of death and dying can have a positive impact on people and is not only negative.

In the evening of 4th September a German speaking Symposium ⁴ with lectures on grief work in the United Kingdom (Bianca Neumann), the impact of Last Aid Courses in different international contexts from Switzerland (Eva Niedermann) and Brazil (Karin Schmid) and the importance of research for the development of Last Aid International and the Last Aid Courses (Erika Zelko) took place in Cologne in co-operation with the Department of Palliative Medicine, University Hospital of Cologne, the caring community Cologne and Letzte Hilfe Deutschland. A panel discussion with experts from Germany focused on the impact of Last Aid Courses on compassionate communities in general and the caring community in Cologne.

Fourth International Last Aid Conference

The international Last Aid Conference on 5th and 6th September was divided in four different plenary sessions with the following main topics.

Palliative care and Last Aid in the community

The first keynote speaker was psychologist Bianca Neumann who introduced the audience to Becoming Grief Kind – a nationwide approach to enhancing death and grief literacy across the United Kingdom.^5,6 Her engaging presentation showed that modern campaigns can lead to public interest in topics that often are taboo and that this can lead to changed behaviour of the public. Karin Ohler from Germany presented the local experience with the development of a caring community in a big city as Cologne and the inclusion of different associations, companies and administration in the development process. ⁷ Julie McIntyre from Canada provided information about the practice of Medical Assistance in Dying (MAID), which is legal in Canada since 2016, and its relation to Last Aid education of the public. Last Aid Courses have the potential to inform the public about available palliative care options and can contribute that individuals may feel that MAID is not their only option for a dignified death. That information and education of the public is needed has been shown in a recent study from Canada that shows that in a sample of 2140 Canadians only 12.1% correctly answered four of five knowledge questions about MAID. ⁸

Karin Schmid from Brazil showed how Last Aid Courses for the people in Brazil ⁹ can contribute to better palliative care for people living in Brasilian favelas. Volunteers play an important role here to provide palliative care for those in need who are often not reached by the public healthcare system.

International experiences

In his key note Raymond Voltz talked about death literacy and caring communities and highlighted the importance of public palliative care education to increase death literacy.^{10 –12} He concluded ‘Improving death literacy in a community can be approached at multiple levels combining innovative practice and scientific evaluation. As this is an ongoing process over decades, appropriate structures need to be put into place to make it independent of specific projects and individuals’. Eva Niedermann and Esther Schmidlin talked about their journey together to implement Last Aid Courses in Switzerland across language and cultural barriers. They showed that the reformed Swiss church and Palliative Vaud (the French-speaking Palliative Care organization in Switzerland) have worked together to translate and disseminate Last Aid Courses in Switzerland. ⁸ From the French-speaking part of the country Last Aid reached France. ⁹ Marie Danel from France described in her lecture the implementation process and impact of Last Aid Courses in France. The project and the courses received a warm welcome and have spread to different parts of the country in a short time. A survey from France with 1114 participants was presented. Around 83% of participants feel more comfortable talking about death and the end of life, 77% taking care of a person at the end of life, 72% accompanying a person with a serious illness. Around 98% would recommend raising awareness about Last Aid. These results show that the Last Aid Courses are feasible and very well received by French people. The ethicist Stefan Dinges from Austria ¹⁰ claimed that Last Aid Courses can contribute to strengthen the sense of meaning and dignity. Sheryl Ruiz from Honduras and Sweden presented her results from a study of a Palliative Care Training Program for Non-Health Caregivers in Honduras which is based on qualitative research and wishes of people without a background from healthcare. She concluded: ‘A palliative care training initiative for non-health caregivers has the capacity to transform a country afflicted by a lack of knowledge’. Her research underlines the importance of palliative care education of the public and shows that people do want such education in order to prepare for participation in care for others in need for palliative care and end-of-life care.

Last Aid Courses for different groups and populations

In his key note Georg Bollig talked about the different needs for palliative care education of different groups and provided an introduction to the development of special Last Aid Course formats for different groups. He stated that Last Aid is a learning system and that inclusion of instructors and course participants in research is crucial for the further development of the Last Aid Course and the worldwide Last Aid Movement. Different organisations and different approaches to implementation can be useful for the implementation of Last Aid in different countries.^2,13–17 Georg Bollig concluded that ‘Adaptation of the Last Aid Course concept for different groups can help to enable more people to participate in Last Aid Courses worldwide. This can raise public awareness for the topics serious illness, palliative care, death, dying and grief’. Marina Schmidt and Doris Kellermann introduced the concept of the Last Aid Course professional and the first experiences with its implementation in Germany. Background for the development of the course were the fact that more than 9% of participants in normal Last Aid Courses for the public where nurses and doctors, ¹⁷ and the results of a pilot study that showed that doctors and nurses want a slightly longer Last Aid Course for healthcare professionals. The results from the pilot study ¹⁸ are very promising, and the article published in the German Journal of Palliative Medicine was awarded as best scientific article in the journal in the year 2023. A larger German study is ongoing and results are planned to be published in 2024/2025. Kirsti Gräf presented the results from a nationwide German study on the Last Aid Course for kids and teens. ¹⁹ The course was very well accepted by children and teenagers from 7 to 17 years of age. Interestingly, the results of the study show that 84% of the participants had experiences with death and dying. Around 91% found the LAC-KT helpful for everyone, and 79% would recommend the course to others. Kirsti Gräf stated that the whole study was performed without public funding by volunteers. The Last Aid Course for kids and teens shall be implemented in different regions in Germany. It is now also already available in Switzerland and Austria. Many countries are interested to translate the concept to other languages and to implement it in different countries. Clare Carolan from Scotland presented the results of a qualitative study on the perceptions of death education in young citizens and factors influencing implementation. Thirty informants from Scotland participated in the study. Clare Carolan concluded: ‘Death education in young people is desired, however course design and delivery must be informed by constructivist pedagogical approaches. Participatory community engagement and statutory recognition of death education could mitigate implementation barriers’.

Last Aid research and perspectives

In her key note Erika Zelko underlined the importance of research for the future improvement and implementation of Last Aid Courses worldwide. Erika Zelko reminded the audience that the Last Aid project development was supported and stimulated by research and that the research activities started already alongside the first Last Aid Courses in Germany. Research has an important role to assure the quality of the courses and to help to adapt the courses to the needs and wishes of the course participants and instructors. She concluded that ‘Last Aid plays a crucial role in normalizing discussions around death and dying. Ultimately, advancing Last Aid through research is essential for improving end-of-life care, enhancing the quality of life for individuals in their final days, and offering better support to families and caregivers’. Leah MacAden from Scotland presented scientific results from a study on Participants’ and Facilitators’ Perceptions of Last Aid Training Online During the COVID 19 Pandemic in Rural Scotland. ²⁰ The results showed the feasibility and acceptability of Online Last Aid Courses for adults and the general public. Her results were that overall, participants reported enhanced personal knowledge, skills and confidence with increase in intentions and decisions to support end-of-life care needs following Online Last Aid Courses. Jason Mills from Australia introduced the audience to the experiences with Last Aid Courses and the lessons learned from Australia. Jason Mills provided inspiring insights in the implementation of Last Aid Courses within the States of Queensland and South Australia, including tailored activities and the experiences from the implementation process. Jason spoke also about the contribution of Last Aid Courses for compassionate communities and end-of-life care in the community. ²¹ Georg Bollig presented the first results from the introduction of Last Aid Courses for medical students at the University of Cologne. The courses were offered as an additional learning option for all medical. The course was welcomed by many students. All participants found that the Last Aid Course is helpful for everybody, and 97% of the participants stated that they would recommend the course to others. Julia Strupp and Georg Bollig introduced an ongoing research project about the implementation of Last Aiders in the workplace. The implementation of Last Aiders may serve as a resource for increased well-being, an open communication culture and as motivation for developing guidelines for dealing with dying, death and grief in the workplace. The project will run until December 2025. ²² Nino Chikhradze from Germany presented a research proposal for a study called INSEL – Informal Care in Outpatient End-of-Life Care. This study aims to investigate the effects of Last Aid Courses on informal caregivers. A pilot study by Giehl et al. ²³ in connection to this project has shown that Last Aid Courses may support the coping process of informal carers.

In addition to the plenary sessions, an interactive exchange of the participants was enabled using a world café method ²⁴ with a one-hour forum for discussions about Last Aid and Networks in Community Palliative Care. In the summary, the conference provided a broad and rich picture of the practice, implementation and research on Last Aid and public palliative care education from different organisations and researchers from around the globe. So far 36 articles and 12 book chapters or books on Last Aid have been published. A list with publications can be found via the conference homepage. ²⁵ The contributions from different parts of the world that the implementation of Last Aid Courses in different countries is a promising public health palliative care approach that may be useful in more countries worldwide. The Last Aid Research Group International (LARGI) will continue to evaluate the Last Aid projects and its effects on people and palliative care in the community around the world.

At the end of the last conference day Yvonne Odoni shared the experiences from the introduction of Last Aid Courses as part of the caring community in Liechtenstein. The conference ended on 6th September 2024 with an invitation to the 5th International Last Aid Conference in Liechtenstein in 2026.