Perspectives – Sterbesettings

Language

Prof. Dr. Corina Caduff [BFH Bern University of the Arts]

Speech and language are omnipresent in settings of dying. There is a new boom of autobiographical reports about dying, from blogs in the Internet to last books written by writers at their personal end of life. These prove the current relevance of speaking about impending death, and they encourage a new exploration of narratives about dying. Reports about dying negotiate between fears and desires, and between the known and unknown. They shift amongst medical data and hope, numerical statistics and possible deviations, and amongst ideas of death and the will to live.

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In narratological inquiry of published texts and everyday ways of speaking, recurring narrative patterns are examined to determine how they shape the understanding and experience of dying. How do narratives about dying reflect nursing, design and religious practices in the settings of dying? How do such narratives in turn influence these practices? The sources of reference include autobiographical reports about dying in various media: literature, text and video blogs on the Internet, reality shows on television, documentaries, as well as studies based on interviews with dying people.

Communication Design

Prof. Dr. Arne Scheuermann [BFH Bern University of the Arts]
Tina Braun [doctoral candidate]

At the site of the practice partner, the Centre for Palliative Care at the Waid City Hospital in Zurich, data collection occurs regarding work clothing, brochures, signage, guidelines for admission interviews, etc. Additionally, the means of communication from adjacent departments such as Dietary Counselling, Social Services, Acute Geriatrics and Oncology, are taken into consideration.

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Additionally, the websites of other professional institutions will be analysed. The data will be examined by means of rhetorical design analysis and guided interviews (with those who are responsible for communication at the practice partner), to determine what intentions and impacts are associated with the elements of design. Based upon this, prototyping of the chosen means of communication can begin.

Product Design

Prof. Bitten Stetter [BFH Bern University of the Arts/ZHdK]

Items such as supplies, aids, medical instruments and also religious and biographical objects are omnipresent in settings of dying. In a design-ethnographic and participatory study that is being conducted at the Centre for Palliative Care at the Waid City Hospital, relatives and health care professionals can examine their surroundings through cultural probes and workshops. Which materials, objects or terms stimulate conversation? What does the end of life smell like, and what does a room suitable for dying look like?

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Subsequently, prototypes of design proposals for approximately a dozen products will be developed, pertaining to, among other things, the living-area bed and communication aids. The prototypes will be offered and distributed to various palliative care institutions in Switzerland. They will be implemented and evaluated with the praxis partner over a period of several weeks . The multi-step integrative process should impart, to those involved, new knowledge (e.g. about physical changes and fluid intake), and should also promote empathetic communication and self-determination, in palliative care.

Religion

Dr. Francis Müller [Zurich University of the Arts]
Gaudenz Metzger [doctoral candidate]

In the case of serious illness and signs of imminent death, religious or spiritual questions become more important. These are sometimes apparent in material things, such as personal belongings, memorabilia or gifts. At the same time, individual forms of religiosity become apparent in everyday actions, micro-rituals, language, and medical therapies and practices. Based upon publicly accessible inventories of objects with religious connotations in palliative care stations, text and video blogs on the Internet, and interviews with professionals and dying people, this project examines which forms of religiosity are visible in settings of dying. The significance they hold for both personal and collective identities will also be explored.

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A first inquiry of such objects is based on the collective data corpus provided by the perspectives of language, design and nursing. The comparison of the data found in settings of dying should make it possible to identify recurring features that indicate corresponding institutionalized or individualized religious practices. Concurrently, patterns of religious/spiritual identity will be searched for, in the publicly accessible spoken and illustrated self-testimonies of dying persons. In addition, narrative interviews will be conducted with health care professionals and patients from the practice partner, as well as with ritual facilitators and pastoral workers from Switzerland. In an interdisciplinary exchange between the perspectives, the role of circulating narratives about dying, and the forms of religion found for the creation of pre-mortal concepts of identity, should be explored.

Nursing

Prof Dr. Eva Soom Ammann [BFH Department of Health Professions]
Julia Rehsmann [Postdoc]

Palliative care, in contrast to other specialized disciplines in health care, pursues the claim that nursing care should be guided by the individual wishes and needs of the dying and their relatives. Additionally, all involved in providing care, be it professionals or laypersons, should work together as equals in the spirit of transprofessionality. These ideals can also be seen as an alternative script to highly professionalised and functionally differentiated health care. However, although broadly communicated and accepted in Palliative Care, they (still) face challenges in their practical implementation.

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Settings of dying are designed by material, narrative and interactive elements, and Palliative Care is attentive to provide well. According to recent research, there is, however, still room for improvement. This is particularly the case with reference to (non-verbal) communication, as well as in cooperatively working together as equals across role boundaries. Collaboration across the boundaries of professions and professionalism seems to be particularly challenging. By conducting ethnographic field research at the Centre for Palliative Care at the Waid City Hospital in Zurich, everyday situational practices will be explored through participant observation, focusing on human (i.e. people) as well as non-human actors (i.e. things). Human actors involved in co-constructing such practices include the dying persons, the nursing and medical professions, other professionals, relatives and also possibly volunteers. It will be investigated which actors (can) participate in designing situations of dying and how, and according to which assumptions and narratives individual practices are designed. The creative potential that situational practices can unfold, in order to challenge and modify existing assumptions, is of particular interest to the nursing perspective. How can this potential be used productively for nursing and health care, possibly even beyond settings of dying?

Artist in Residence

Eva Wandeler

The artist Eva Wandeler is a regular guest in the research project. She complements the four perspectives with a free artistic approach to settings of dying, and focuses on the visual worlds of the dying. Imaginary images of dying are linked to the questions of: what kind of visual art can be found in palliative wards, how does it shape the rooms, according to which criteria is art commissioned or selected for palliative wards, and which notions of dying are inherent in these criteria?

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The research on imaginary visual worlds and on art in palliative care is also being expanded upon to include the following material from the research project: linguistic images, images of visual communication, images of religious-spiritual objects, and information from dying people and their relatives regarding existing images. Wandeler, who, in her work, explores rituals in relation to things, spaces and materials, will then transfer these findings into artistic works, such as video performances. This will promote reflection regarding both the private and intimate moments of the dying process, as well as on social ideas about dying. In doing so, this will enable the different subtexts of dying (e.g. decay, pain) and the dominant references about images (images of nature, burning candles), to be artistically fathomed. The generated results are to then be presented and discussed at the project conferences and in palliative care facilities.