Conference Agenda

Idea

For the past 20 years, there has been an inpatient hospice in Eningen. With the necessity for a new building looming, the question arises: what might a future hospice look like and need? It should possess the flexibility to cater to the diverse needs of individuals and their families. Temporary stays in the hospice should offer experiences of community, counselling, and respite. If a hospice adopts a perspective of being part of a caring community, it can foster a societal attitude of compassion across all areas of life. The Eningen Hospice, in collaboration with various individuals and organizations in the region, feels a responsibility for fostering and encouraging the coexistence among people of all ages and circumstances, be they healthy, ill, or at the end of life. A hospice should be a place where individuals can find purpose, engage in dialogue, seek guidance in various life situations, take part in cultural activities, and like in many other parts of our society, experience the end of life. This prompts the question: what are the specific needs of a caring community in relation to a hospice?

Implementation:

Through workshops involving volunteers and full-time staff, the initial step was to gather insights into what aspects should be preserved, reconsidered, or innovated in a new hospice. Concurrently, a project was initiated as part of a caring community initiative, aiming to provide philosophical inspiration for the community and, consequently, for the hospice's development process. A workshop is scheduled for June 2024, where residents of Eningen will be empowered to identify and discuss fundamental topics and philosophical questions directly related to their daily lives. Facilitated by philosophical practitioners, they will devise mini-interventions within their surroundings, offering philosophical inspiration for the Caring Community of Eningen and the hospice project. Philosophy can be experienced as a shared space for resonance. In Autumn 2024, there will be an evaluation of the process and outcomes, which will subsequently be integrated into the hospice project.

Conclusions:

Thesis: For the nurturing of a compassionate society, including a compassionate hospice within this society, there must be room for fundamental contemplation and reflection. Philosophy intertwined with everyday life can provide such space and yield valuable insights for future requirements and advancements.

With our contribution we want to participate in the exchange of experiences from compassionate cities in German-speaking countries (Germany, Austria, Switzerland, D/A/CH).

How can people at the end of life who live alone at home be well supported and cared for? How can people with forgetfulness and disorientation be helped to find their way around in everyday life? Who looks after those who are socially and economically disadvantaged or socially marginalised? How can we, how can society contribute to ensuring that marginalised groups are not forgotten?

These are questions that lie at the interface between palliative care and community care. In order to address these questions, we have set up a network in the German-speaking world, departing from the Institute of Nursing Science at the University of Vienna. Together with the network, we have started a writing project focusing on the question: "Social participation - how to include >hard-to-reach< groups"?

In this volume, the personal and professional experiences and expertise of the members of the network will each shed light on one or more specific aspects of the issue of social participation of hard-to-reach groups. Telling and sharing these with each other - also in writing - supports and promotes mutual understanding.

The network has so far met 5 times online in half-day moderated networking workshops. A first meeting in person is planned for Fri 18 October 2024 in Vienna. The joint publication will be presented there and the further network process will be decided.

The Charter process from 2008 to 2016 significantly advanced the further development of hospice and palliative care in Germany on the basis of the 5 Charter key principles. The participation of over 50 institutions and organizations relevant to society and health policy in the consensus process underlines the importance of the goals of the Charter and the recommendations for action adopted by consensus. In particular, Key Principle 1 of the Charter emphasizes social responsibility and the necessary solidarity of fellow human beings when accompanying the dying. On this basis, the aim is to spread the topics of dying, death and mourning across society and thus (re)integrate them into the context of people's lives in Germany.

The aim of the further implementation of the charter is therefore to promote the development of caring communities (this also includes compassionate communities) in the spirit of the Charter for the Care of the critically Ill and the Dying in Germany in order to promote the (further) development of what is, above all, an institution-and professional-centered care at the end of life to a community-oriented (re)care culture in Germany, to strengthen citizens in dealing with the topics of dying, death and grief and to promote their skills.

Based on a qualitative nationwide inventory of the ongoing and completed (pilot) projects, two expert groups will be set up to support the development of sustainable caring community structures in Germany. One group is developing a workshop concept to support initiatives in establishing and expanding network structures around the topics of dying, death and grief. The other group develops recommendations for action in order to provide information on the launch and further procedure of corresponding initiatives.

Caring communities in the sense of the charter arise where professional actors in hospice and palliative care work together with civil society, private sector and political actors and work together to ensure the conditions for a dignified death for all local citizens and mutual care. The charter process can be linked here. The Charter Round Table has established itself as a suitable platform for joint work.

Author: Anne-Susanna Dreßke

Co-author: Dr. Birgit Weihrauch

Idea: «Where do you stand with your advance care planning (ACP)?» This question is still rarely asked among family and friends. The national working group (ACP WG), commissioned by the Federal Council and led by the Federal Office of Public Health (FOPH) and the Swiss Academy of Medical Sciences (SAMS), is working to ensure that this becomes more common.

ACP is a process that is open to everyone - not just people at the end of life. Through ACP, individuals reflect on their personal values, wishes, and expectations regarding treatment and care in the event of illness or accident, thereby enhancing self-determination. There are different ways of dealing with the topic. The aim of normalizing ACP does not mean imposing a norm: there is no «right or wrong» in dealing with these sensitive issues.

Implementation: The task of the national ACP working group is to steer the implementation of ACP measures to strengthen awareness, accessibility and quality of ACP and set key priorities.

Lessons Learned: The ACP WG published the «Roadmap for the implementation of advance care planning (ACP) in Switzerland» in March 2023, which outlines 12 recommendations. They cover four main areas:

• Measures to ensure that ACP becomes a normal part in life for all people who want it, regardless of age, place of living, phase in life, origin, health literacy and health condition;

• Assistance in appointing an authorized representative and in reflecting about unforeseeable and/or complex medical events, as well as dying and death;

• Supporting healthcare professionals in addressing ACP by strengthening their communication and methodological skills;

• Improving the quality and accessibility of documentation and the framework conditions for the remuneration of ACP services.

The roadmap forms the basis for concrete projects to be implemented in the coming years. The challenge and at the same time the strength of the national initiative lies in the networking and cooperation with a large number of independent administrative, scientific and political structures. The aim is to continuously involve all the stakeholders at different levels and secure their support of.