Continuing our new series about palliative care in the context of humanitarian crisis. We look at the implications of providing palliative care and bereavement care for migrants, refugees and people who have fled war-torn countries and places of conflict and how the hospice and palliative care community can offer appropriate support.
Today, Johannes Bükki and Piret Paal talk about their recent study on migrants’ needs in a palliative setting, Hospice Care Da Sein in Munich, Germany.
At the time we started our study on palliative care in patients with migration background, there was a lot of discussion on culturally sensitive care. Healthcare staff expressed little self-confidence in providing care to migrants,1 they were just the ‘others’ with exotic names and needs. As a long-standing provider of hospice and palliative care to migrant patients, we are often asked questions about Muslim funeral rites, how to discuss end-of-life care with Russian immigrants, how to communicate with the elderly Greek patient who has forgotten his German, or how to support the Iraqi family who are refusing any help. Each of these examples may be explained by ‘culture’. Thus, using ‘culture’ to classify individuals may help to draft checklists and guidelines for culture-sensitive care; however, such stereotyping is a serious error as wide heterogeneity has been observed even within cultural groups. 2 Therefore, we started out by designing a qualitative study to map preferences and views of the patients themselves. To avoid selection bias, non-migrant, native German patients were also included.
The first serious doubts about ‘culture’ arose when the interviews started. We could not believe how blurred the distinction between immigrants and natives was – fully integrated citizens of Munich were recalling a childhood abroad, and repatriates from former Soviet countries had indeed been members of the German minority back there. Thus, who was a migrant or, to be more precise, which of the elements of ‘culture’ did determine a patient’s healthcare behaviour? And, finally, how could we develop recommendations if even the starting points were that unclear?
To be honest, we were not able to answer any of these questions completely. From February to October 2016, 37 qualitative interviews were conducted. Patients’ eagerness to participate was astonishing. Across the entire population we detected a limited understanding and knowledge of palliative/hospice care and a suppression of the term ‘end-of-life’. Issues obviously specific to migrants were that both access to health care and survival were generally worse in their country of origin; that altered identity and language were affecting them at practical and emotional levels, and that ‘being a migrant’ might remain overlooked in the absence of explicit signs such as poor language skills, a foreign name or exotic looks.
What we definitely could confirm was that migrants provided narratives of a ‘double home’ experience. To avoid unease and to address hidden needs, we suggest that it would be beneficial to ask patients about their ‘home’. Patients might claim ‘home’ as being in Germany, but their body language – silence, tears, anxiousness – told a different story.
When ‘home’ means more than one habitat, specific concerns (for example, homesickness or the wish to be buried at home) may need special attention from caregivers. 3
- Milberg A, Torres S, Agard P. Health Care Professionals’ Understandings of Cross-Cultural Interaction in End-of-Life Care: A Focus Group Study. PLoS One. 2016; 11(11): e0165452.
- Ceuterick M, Vandebroek I. Identity in a medicine cabinet: Discursive positions of Andean migrants towards their use of herbal remedies in the United Kingdom. Social Science & Medicine. 2017; 177: 43-51.
- Bray Y, Goodyear-Smith F, Gott M. Transnationals’ experience of dying in their adopted country: a systematic review. Journal of Palliative Medicine. 2015; 18(1): 76-81.
Links and further reading
- Hospizdienst DaSein e.V. website.
- ‘If I had stayed back home, I would not be alive anymore…” – exploring end-of-life preferences in patients with migration background’. Paal P, Bükki J, 6 April 2017. PLOS ONE 12(4) e0175314. Download the article here.
- PALCHASE (Palliative Care in Humanitarian Aid Situations and Emergencies). For more information please email Joan Marston.
- New PALCHASE Survey on palliative care in humanitarian contexts – interested in joining a community of practice? Read more about the survey and take part here.
- If you’ve worked in humanitarian health care in the last two years, please complete this survey and add your voice to a global discussion on current practices and needs related to non-curative healthcare in humanitarian emergencies.
- Palliative care in humanitarian crises: Always something to offer. The Lancet Online, 15 April 2017.