title: Room for Death--International museum-visitors' preferences regarding the end of their life.
abstract: Just as pain medications aim to relieve physical suffering, supportive surrounding for death and dying may facilitate well-being and comfort. However, little has been written of the experience of or preferences for the surroundings in which death and dying take place. In this study, we aim to complement our research from perspectives of patients, family members and staff, with perspectives from an international sample of the general public. Data derives from a project teaming artists and craftspeople together to create prototypes of space for difficult conversations in end-of-life (EoL) settings. These prototypes were presented in a museum exhibition, "Room for Death", in Stockholm in 2012. As project consultants, palliative care researchers contributed a question to the public viewing the exhibition, to explore their reflections: "How would you like it to be around you when you are dying?" Five-hundred and twelve responses were obtained from visitors from 46 countries. While preliminary analysis pointed to many similarities in responses across countries, continued analysis with a phenomenographic approach allowed us to distinguish different foci related to how preferences for surroundings for EoL were conceptualized. Responses were categorized in the following inductively-derived categories: The familiar death, The 'larger-than life' death, The lone death, The mediated death, The calm and peaceful death, The sensuous death, The 'green' death, and The distanced death. The responses could relate to a single category or be composites uniting different categories in individual combinations, and provide insight into different facets of contemporary reflections about death and dying. Despite the selective sample, these data give reason to consider how underlying assumptions and care provision in established forms for end-of-life care may differ from people's preferences. This project can be seen as an example of innovative endeavors to promote public awareness of issues related to death and dying, within the framework of health-promoting palliative care.
authors.affiliation: Department of Learning, Informatics, Management and Ethics/Medical Management Center, Karolinska Institutet, 171 77 Stockholm, Sweden; Department of Nursing, Umeå University, 901 87 Umeå, Sweden. Electronic address: olav.lindqvist@umu.se.
authors.forename: Olav
authors.initials: O
authors.lastname: Lindqvist
authors.affiliation: Department of Learning, Informatics, Management and Ethics/Medical Management Center, Karolinska Institutet, 171 77 Stockholm, Sweden; Karolinska University Hospital, Center for Innovation, 141 86 Stockholm, Sweden. Electronic address: carol.tishelman@ki.se.
authors.forename: Carol
authors.initials: C
authors.lastname: Tishelman
mesh_terms: D001293:Attitude to Death; D003142:Communication; D003643:Death; D003657:Decision Making; D006801:Humans; D057240:Patient Preference / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires
keywords: Death and dying; End-of-life care; Health-promoting palliative care; Museum; Palliative care; Phenomenography; Public health; Sweden