Open Access“If I had stayed back home, I would not be alive any more…” – Exploring end-of-life preferences in patients with migration background
Author(s) -
Piret Paal,
Johannes Bükki
Publication year - 2017
Publication title -
plos one
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.99
H-Index - 332
ISSN - 1932-6203
DOI - 10.1371/journal.pone.0175314
Subject(s) - palliative care , thematic analysis , autonomy , end of life care , qualitative research , medicine , grounded theory , health care , limiting , nursing , psychology , gerontology , family medicine , sociology , political science , social science , law , mechanical engineering , engineering
Background In patients with life-limiting conditions and a history of migration, a higher risk of not dying at home and limited access to palliative care services has been reported. Aim To explore the views and end-of-life preferences of patients with a migration history in Germany and to identify migration specific themes. Design Two-armed study using Kaufmann’s ‘understanding interview’ (‘focused interview’) method and grounded theory approach. Thematic content analysis was applied using MaxQDA 12 software. Setting/Participants Migrant and non-migrant adult patients with far advanced, life-limiting disease receiving palliative care in different specialist level settings (specialist home palliative care, palliative care inpatient unit, inpatient hospice). Results The 37 interviewees (19 native Germans and 18 patients from Europe and the U.S., Israel, Turkey, and Indonesia) expressed eleven themes covering health care- and patient-related issues, of which four emerged to be specific for migrants: worse survival in home country; the perception of an altered identity and ‘not belonging’; language skills as prerequisite to survive; and longing for ‘home’ while being attached to Germany. From these categories, three overarching themes were derived: (1) a limited understanding of the concept of ‘palliative care’; (2) the suppression of end of life discussions for its association with suffering and loss of autonomy; and (3) the significance of complex individual migration histories. Conclusions Based on these findings, the concept of a ‘double home’ experience is proposed. Barriers to access to palliative care should be minimized for all patients while cultural stereotyping has to be avoided.