Research project approaches the ethnographic basis of biographical perspectives in the living environment of an inpatient hospice through dialog

As part of her project with the working title "Dying people as teachers in hospices", Anja Herzog was able to present some of her research findings at the Vienna Nursing Congress thanks to funding from the Equal Opportunities Office at BTU Cottbus-Senftenberg.

Anja Herzog's Master's thesis with the working title Dying people as teachers in hospice: The subjective view of dying people on their health experience in the lifeworld - adult hospice (supervised by Prof. Dr. Jacob Spallek & M. Phil., Dipl. (FH) Marie Tallarek) examines the "everyday lifeworld" of people who previously described in anonymity: "I am grateful [...] Otherwise I am alone with the disease. That's what I'm trying to do. That's the strategy I'm currently pursuing (P3, 323 - 328)." (Chaploz-Süssenbach et al. 2016: 175).

The discourse shows that patients report biographical disorders (Roulston et al. 2018: 1). They inform us that they are not allowed to vote on relevant health-specific issues (cf. G-BA 2022). Instead, the ubiquitous talk of vulnerability seems to prevent fundamental and human rights from being respected, so that they are "insufficiently observed or even violated." (German Ethics Council 2022: 107). Dying people experience that "even in high-income countries, they die in pain and after severe health problems, not in the place of their choice and under considerable psychological stress." (Finkelstein et al. 2021: e420). Based on these and other explicit experiences, the study addressed the following main question: How do dying people in the living environment of an adult hospice in Germany experience care in this phase of life?

The results have an equal impact on the possible levels of life practice. Based on the intended objectives, the following results are presented. In the dialogs:

1. can be sensitized to the experience of the life process beyond institutional boundaries.
   • Poster presentation in Vienna (2023)
2. can be experienced more carefully to the respective existential resources and needs of the dying in this phase of life in order to realize the well-being and quality of life of the people.
   • Book: Herzog, A. (2023). Death as an object of reflection or part of life. Dying people as teachers in the hospice. ISBN: 978-3-96146-944-4
3. The actors in the healthcare professions are invited to engage in a reflective learning process.
   • Video podcast - Nursing education (10.2023): Episode 67: Death Literacy - Nursing Education (pflegebildung.net)

With the scientific-theoretical foundation of lifeworld ethnography (Honer 2003 & 2011), the researcher enters the lifeworld of the (inpatient) hospice with a double perspective. I focus on the experiences in the sense of a death literacy character (e.g. Noonan et al. 2016 & Leonard et al. 2021). Currently, the focus is on desirable further research activities that are dedicated to death literacy in greater depth. In this context, I would like to thank the Equal Opportunities Office, without whose financial support the trip to the nursing congress in Vienna would not have been possible to the same extent. Together with another colleague (Katharina Loehr), we were able to use the opportunity to raise awareness of the dying phase of life beyond institutional boundaries.

~October 2023, Anja Herzog

Contact:

Anja Herzog
Faculty Four. Nursing Science: Department of Teaching and Learning in Professional Practice (ALLB)
T: +49 (0)15156568020
E: anja.herzog(at)b-tu.de

Literature:

_{Chaploz-Süssenbach, Ch., Sailer Schamm, M., Stoll, H., Spirig, R. (2016). "Not letting the world become too small". How people with cancer and relatives cope with transitions in the final months. Pflege, 29(4), 171-181. doi: 10.1024/1012-5302/a000495.
(G-BA) Gemeinsamer Bundesausschuss (ed.): Patientenbeteiligung, Online im Internet, URL: Patientenbeteiligung - Gemeinsamer Bundesausschuss (g-ba.de), [Status n.d.] Query 07.05.2023.
Deutscher Ethikrat (2022). Vulnerability and resilience in the crisis - Ethical criteria for decisions in a pandemic. Opinion. Berlin: Ethics Council.
Finkelstein, E-A., Bhadelia, A., Goh, C., Drishti, B., Singh, R., Bhatnagar, S., Connor, St.-R. (2021). Cross Country Comparison of Expert Assessments of the Quality of Death and Dying 2021. In: Journal of Pain and Symptom Management Vol. 63 No. 4.
Herzog, A. (2023a). Death as an object of reflection or part of life. Dying people as teachers in the hospice. Hamburg: Diplomica. ISBN: 9783961469444.
Honer, A. (2003). Lifeworld analysis in ethnography. In U. Flick, E. von Kardorff, I. Steinke (Eds.), Qualitative Research. A handbook (pp. 194-204). Reinbek near Hamburg: Rowohlt.
Honer, A. (2011). Small corporealities. Explorations in lifeworlds (1st ed.). Wiesbaden: Springer.
Leonard, R., Noonan, K., Horsfall, D., Kelly, M., Rosenberg, J. P., Grindrod, A., Rumbold, B., Rahn, A. (2021). Developing a death literacy index, Death Studies, Taylor & Francis Group, doi: 10.1080/07481187.2021.1894268.
Noonan, K., Horsfall, D., Leonard, R., Rosenberg, J. (2016). Developing death literacy. Progress in Palliative Care, VOL. 0 NO. 0. doi: 10.1080/09699260.2015.1103498.
Roulston, A., Davidson, G., Kernohan, G., Brazil, K. (2018). Living with Life-Limiting Illness: Exploring the Narratives of Patients with Advanced Lung Cancer and Identifying How Social Workers Can Address Their Psycho-Social Needs. In: British Journal of Social Work 0, 1-18.}