Dealing with ethical and existential issues at end of life through co-creation

• Published in: Nursing ethics 2020-06, Vol.27 (4), p.1012-1031
• Main Authors: Hemberg, Jessica, Bergdahl, Elisabeth
• Format: Article
• Language: English
• Subjects: Adult; Attitude of Health Personnel; Co-creation; End of life decisions; end-of-life care; Ethical dilemmas; ethical issues; Existentialism; Female; Finland; hermeneutics; Home Care Services; Home health care; Hospice care; Humans; Informed consent; Male; Medical ethics; Middle Aged; Nurse-Patient Relations; Nurses; Nurses - psychology; Nursing Care - ethics; Palliative Care; palliative home care; Permission; Quality of Life; Terminal Care; thematic analysis
• ISSN: 0969-7330; 1477-0989; 1477-0989
• DOI: 10.1177/0969733019874496

Background In research on co-creation in nursing, a caring manner can be used to create opportunities for the patient to reach vital goals and thereby increase the patient’s quality of life in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. Nurses must be extra sensitive to patients’ and their relatives’ needs with regard to ethical and existential issues and situations in home care encounters, especially at the end of life. Aim The aim of this study was to explore nurses’ experiences of dealing with ethical and existential issues through co-creation at the end of life in palliative home care. Research design, participants, and research context The material consisted of texts from interviews with 12 nurses in a home care context. A hermeneutical approach was used, and the method was inspired by a thematic analysis. Ethical considerations Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. Ethical permission to conduct the study was given from organizations that participated in this study. Findings A main theme and four subthemes emerged. The main theme was “Deep co-creative relationships are needed to manage ethical and existential issues at the end of life.” A model was created to display the findings and relations between ethical issues and situations and the need for a deep trustful caring relationship to solve problems in palliative home care. Discussion Together, the themes can be considered as a tool for learning and dealing with ethical and existential issues at the end of life in home care. The themes can also be seen as a part of nurses’ ethical competence within this context. Conclusion The quality of life at the end of life can be improved through co-creation, despite difficult ethical and existential issues. Future research should focus on co-creation from the patients’ perspective.