Dying at home – the final challenge for migrants?

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.

Johannes Bükki

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.

Piret Paal

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

References

  1. 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.
  2. 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.
  3. 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

Follow the EAPC Blog for more stories in this series.

This entry was posted in ADVOCACY & POLICY, Palliative care in humanitarian crises and tagged . Bookmark the permalink.

2 Responses to Dying at home – the final challenge for migrants?

  1. Yvonne Bray says:

    Thank you for initiating discussions in this area.
    I have recently completed PhD study in New Zealand on the experience of migrants dying away from their birth countries or homeland. Settling into a community of support that celebrates different cultural expression is key to being able to reconcile feelings that arise in end-of-life that results from possessing an inner identity from homeland and a newer hybrid identity.
    I also attended the EAPC conference in Madrid and while holidaying was aware of refugees in a couple of cities I visited, living in the streets with their belongings piled up. Who is their community of support in the event of a life threatening illness? How do they reconcile these circumstances in end-of-life? What does life review when dying look like for them? I read a recent article in Times which headlined ‘When home is not where the heart is’. Indeed, this is an area that requires resources and support at all levels of policy and strategy to application at ground level. ‘Cultural compassion’ was suggested at the conference, rather than ‘cultural competence’. That resonates with me since my research.

    • pallcare says:

      Hello Yvonne Thank you so much for your comments. Delighted to have your email address as you have been on my To Do list since hearing you speak about your PhD and poster in Madrid in the Meet the Expert session on refugees. I will email you within next few days Best wishes Avril and social media team

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