Skip to main content

Advertisement

SpringerLink
Log in

Palliative Care Utilization Among Non-Western Migrants in Europe: A Systematic Review

  • Review Paper
  • Published:
Journal of Immigrant and Minority Health Aims and scope Submit manuscript

Abstract

The paper aims to identify and describe the European evidence on opportunities and barriers to access and utilization of palliative care among non- western migrants. A systematic review in accordance with PRISMA guidelines was conducted in June 2020, searching Medline, CINAHL, PsychINFO and EMBASE databases. PROSPERO# CRD42020193651. Studies included empirical research published between 2011 and 2020. Search words were, for example, ethnic groups and palliative care. Thematic analysis was used to analyze data. Twenty nine qualitative and six quantitative studies were included. Four main themes were identified: communication and language; knowledge and awareness; patient preferences, cultural and religious issues; and lack of resources at different levels of palliative care service provision. Migrants’ access to palliative care is impeded at system, community and individual levels, yet, recommendations are mostly at the individual level. Closer attention is required to these different levels when designing future palliative interventions for migrants.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. McAuliffe M, Khadria B, Céline Bauloz MN. World migration report 2020. Geneva: International Organisation for Migration; 2020.

    Google Scholar 

  2. Migration in Europe—Statistics and Facts: Statista Research Department; [updated 05.03.2020. https://www.statista.com/topics/4046/migration-in-europe/.

  3. Migration and migrant population statistics: Eurostat; [updated 15.07. 2020]. https://ec.europa.eu/eurostat/statistics-explained/index.php/Migration_and_migrant_population_statistics.

  4. How health systems can address health inequities linked to migration and ethnicity. 2010.

  5. Palliative care: World Health Organization. https://www.euro.who.int/en/health-topics/noncommunicable-diseases/cancer/policy/palliative-care.

  6. Expert Panel on effective ways of investing in Health (EXPH), Report on Access to Health Services in the European Union. 3 May 2016.

  7. Davies E, Higginson IJ. Better palliative care for older people. Copenhagen: World Health Organization (WHO) Regional Office for Europe; 2004.

    Google Scholar 

  8. Mladovsky P. Migration and health in the EU. Research Note produced for the European Commission as part of the Health and Living Conditions Network of the European Observatory on the Social Situation and Demography. 2007.

  9. Cuadra CB. Right of access to health care for undocumented migrants in EU: a comparative study of national policies. Eur J Public Health. 2012;22(2):267–71.

    PubMed  Google Scholar 

  10. Jansky M, Owusu-Boakye S, Nauck F. An odyssey without receiving proper care": experts’ views on palliative care provision for patients with migration background in Germany. BMC Palliat Care. 2019;18(1):1–10.

    Google Scholar 

  11. What are the 7 continents of the world?: world population review. https://worldpopulationreview.com/continents/7-continents-of-the-world.

  12. Pavli A, Maltezou H. Health problems of newly arrived migrants and refugees in Europe. J Travel Med. 2017. https://doi.org/10.1093/jtm/tax016.

    Article  PubMed  Google Scholar 

  13. Ikram UZ, Kunst AE, Lamkaddem M, Stronks K. The disease burden across different ethnic groups in Amsterdam, the Netherlands, 2011–2030. Eur J Public Health. 2014;24(4):600–5.

    PubMed  Google Scholar 

  14. Calanzani N, Koffman J, Higginson I. Palliative and end of life care for Black, Asian and Minority Ethnic Groups in the UK: demographic profile and the current state of palliative and end of life care provision. London: Public Health England, King’s College London and Marie Curie Cancer Care; 2013.

    Google Scholar 

  15. Nair M, Prabhakaran D. Why do South Asians have high risk for CAD? Glob Heart. 2012;7(4):307–14.

    PubMed  Google Scholar 

  16. Worth A, Irshad T, Bhopal R, Brown D, Lawton J, Grant E, et al. Vulnerability and access to care for South Asian Sikh and Muslim patients with life limiting illness in Scotland: prospective longitudinal qualitative study. BMJ. 2009;338:b183.

    PubMed  PubMed Central  Google Scholar 

  17. Evans N, Meñaca A, Andrew EV, Koffman J, Harding R, Higginson IJ, et al. Appraisal of literature reviews on end-of-life care for minority ethnic groups in the UK and a critical comparison with policy recommendations from the UK end-of-life care strategy. BMC Health Serv Res. 2011;11(1):1–11.

    Google Scholar 

  18. Calanzani N, Moens K, Cohen J, Higginson IJ, Harding R, Deliens L, et al. Choosing care homes as the least preferred place to die: a cross-national survey of public preferences in seven European countries. BMC Palliat Care. 2014;13:48.

    PubMed  PubMed Central  Google Scholar 

  19. Evans N, Menaca A, Andrew EV, Koffman J, Harding R, Higginson IJ, et al. Systematic review of the primary research on minority ethnic groups and end-of-life care from the United Kingdom. J Pain Symptom Manage. 2012;43(2):261–86.

    PubMed  Google Scholar 

  20. Smith AK, Earle CC, McCarthy EP. Racial and ethnic differences in end-of-life care in fee-for-service Medicare beneficiaries with advanced cancer. J Am Geriatr Soc. 2009;57(1):153–8.

    PubMed  Google Scholar 

  21. Speck P. Culture and spirituality: essential components of palliative care. Postgrad Med J. 2016;92(1088):341–5.

    PubMed  Google Scholar 

  22. De Souza J, Gillett K, Froggatt K, Walshe C. Perspectives of elders and their adult children of Black and minority ethnic heritage on end-of-life conversations: a meta-ethnography. Palliat Med. 2020;34(2):195–208.

    PubMed  PubMed Central  Google Scholar 

  23. De Graaff FM, Mistiaen P, Deville WL, Francke AL. Perspectives on care and communication involving incurably ill Turkish and Moroccan patients, relatives and professionals: a systematic literature review. BMC Palliat Care. 2012;11:1–37.

    Google Scholar 

  24. Torres S, Ågård P, Milberg A. The ‘other’in end-of-life care: providers’ understandings of patients with migrant backgrounds. J Intercult Stud. 2016;37(2):103–17.

    Google Scholar 

  25. 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.

    PubMed  PubMed Central  Google Scholar 

  26. Schrank B, Rumpold T, Amering M, Masel EK, Watzke H, Schur S. Pushing boundaries-culture-sensitive care in oncology and palliative care: a qualitative study. Psychooncology. 2017;26(6):763–9.

    PubMed  Google Scholar 

  27. Hawker S, Payne S, Kerr C, Hardey M, Powell J. Appraising the evidence: reviewing disparate data systematically. Qual Health Res. 2002;12(9):1284–99.

    PubMed  Google Scholar 

  28. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.

    Google Scholar 

  29. Venkatasalu MR. Let him not be alone: perspectives of older British South Asian minority ethnic patients on dying in acute hospitals. Int J Palliat Nurs. 2017;23(9):432–9.

    PubMed  Google Scholar 

  30. Venkatasalu MR, Arthur A, Seymour J. Talking about end-of-life care: the perspectives of older South Asians living in East London. J Res Nurs. 2013;18(5):394–406.

    Google Scholar 

  31. Venkatasalu MR, Seymour JE, Arthur A. Dying at home: a qualitative study of the perspectives of older South Asians living in the United Kingdom. Palliat Med. 2014;28(3):264–72.

    PubMed  Google Scholar 

  32. de Graaff FM, Francke AL, van den Muijsenbergh ME, van der Geest S. Understanding and improving communication and decision-making in palliative care for Turkish and Moroccan immigrants: a multiperspective study. Ethn Health. 2012;17(4):363–84.

    PubMed  Google Scholar 

  33. Graaff FM, Francke AL, Muijsenbergh METC, Geest S. Talking in triads: communication with Turkish and Moroccan immigrants in the palliative phase of cancer. J Clin Nurs. 2012;21(21–22):3143–52.

    PubMed  Google Scholar 

  34. Wilkinson E, Randhawa G, Brown E, Da Silva GM, Stoves J, Warwick G, et al. Exploring access to end of life care for ethnic minorities with end stage kidney disease through recruitment in action research. BMC Palliat Care. 2016;15:1–9.

    Google Scholar 

  35. Wilkinson E, Randhawa G, Brown E, Da Silva GM, Stoves J, Warwick G, et al. Time, timing, talking and training: findings from an exploratory action research study to improve quality of end of life care for minority ethnic kidney patients. Clin Kidney J. 2017;10(3):419–24.

    PubMed  PubMed Central  Google Scholar 

  36. Wilkinson E, Randhawa G, Brown EA, Da Silva GM, Stoves J, Warwick G, et al. Communication as care at end of life: an emerging issue from an exploratory action research study of renal end-of-life care for ethnic minorities in the UK. J Ren Care. 2014;40(Suppl 1):23–9.

    PubMed  Google Scholar 

  37. Wilkinson E, Waqar M, Gill B, Hoque P, Jetha C, Bola KK, et al. Exploring end-of-life care for South Asian kidney patients: interviewer reflections. Int J Palliat Nurs. 2017;23(3):120–8.

    PubMed  Google Scholar 

  38. Van Keer R-L, Deschepper R, Francke AL, Huyghens L, Bilsen J. Conflicts between healthcare professionals and families of a multi-ethnic patient population during critical care: an ethnographic study. Crit Care. 2015;17:1–13.

    Google Scholar 

  39. Van Keer R-L, Deschepper R, Huyghens L, Bilsen J. Challenges in delivering bad news in a multi-ethnic intensive care unit: an ethnographic study. Patient Educ Couns. 2019;102(12):2199–207.

    PubMed  Google Scholar 

  40. Van Keer RL, Deschepper R, Huyghens L, Bilsen J. Mental well-being of patients from ethnic minority groups during critical care: a qualitative ethnographic study. BMJ Open. 2017;7(9):e014075.

    PubMed  PubMed Central  Google Scholar 

  41. Gunaratnam Y. Cultural vulnerability: a narrative approach to intercultural care. Qual Soc Work. 2013;12(2):104–18.

    Google Scholar 

  42. Kai J, Beavan J, Faull C. Challenges of mediated communication, disclosure and patient autonomy in cross-cultural cancer care. Br J Cancer. 2011;105(7):918–24.

    CAS  PubMed  PubMed Central  Google Scholar 

  43. Henke A, Thuss-Patience P, Behzadi A, Henke O. End-of-life care for immigrants in Germany. An epidemiological appraisal of Berlin. PLoS ONE. 2017;12(8):e0182033.

    PubMed  PubMed Central  Google Scholar 

  44. Finnvold JE. How social and geographical backgrounds affect hospital admission with a serious condition: a comparison of 11 immigrant groups with native-born Norwegians. BMC Health Serv Res. 2018;18(1):1–11.

    Google Scholar 

  45. Fang ML, Malcoe LH, Sixsmith J, Wong LY, Callender M. Exploring traditional end-of-life beliefs, values, expectations, and practices among Chinese women living in England: informing culturally safe care. Palliat Support Care. 2015;13(5):1261–74.

    PubMed  Google Scholar 

  46. Debesay J, Harslof I, Rechel B, Vike H. Facing diversity under institutional constraints: challenging situations for community nurses when providing care to ethnic minority patients. J Adv Nurs. 2014;70(9):2107–16.

    PubMed  Google Scholar 

  47. Islam Z, Markham S, Faull C. Raising the profile of palliative care services for BAME groups within Leicester city: challenges with recruiting and training volunteers. Divers Equal Health Care. 2015;12(3):116–23.

    Google Scholar 

  48. Raunkiar M. Conceptions about the death of elderly with ethnic minority background in own homes and in nursing homes. Klin Sygepleje. 2012;26(3):61–73.

    Google Scholar 

  49. Markham S, Islam Z, Faull C. (2014) I never knew that! Why do people from Black and Asian Minority Ethnic groups in Leicester access hospice services less than other groups? A discussion with community groups. Divers Equal Health Care. 2014;11:23–745.

    Google Scholar 

  50. Cowan MM. The lived experiences of the Sikh population of south east England when caring for a dying relative at home. Int J Palliat Nurs. 2014;20(4):179–86.

    PubMed  Google Scholar 

  51. Paal P, Bükki J. “If I had stayed back home, I would not be alive any more…”: exploring end-of-life preferences in patients with migration background. PLoS ONE. 2017;12(4):e0175314.

    PubMed  PubMed Central  Google Scholar 

  52. Samanta J, Samanta A, Madhloom O. A rights-based proposal for managing faith-based values and expectations of migrants at end-of-life illustrated by an empirical study involving South Asians in the UK. Bioethics. 2018;32(6):368–77.

    PubMed  Google Scholar 

  53. Coupland VH, Madden P, Jack RH, Moller H, Davies EA. Does place of death from cancer vary between ethnic groups in South East England? Palliat Med. 2011;25(4):314–22.

    PubMed  Google Scholar 

  54. Koffman J, Ho YK, Davies J, Gao W, Higginson IJ. Does ethnicity affect where people with cancer die? A population-based 10 year study. PLoS ONE. 2014;9(4):e95052.

    PubMed  PubMed Central  Google Scholar 

  55. Torensma M, Suurmond JL, van der Heide A, Onwuteaka-Philipsen BD. Care and decision-making at the end of life for patients with a non-western migration background living in the Netherlands: a nationwide mortality follow-back study. J Pain Symptom Manage. 2020;59(5):990-1000.e5.

    PubMed  Google Scholar 

  56. Sharpe KH, Cezard G, Bansal N, Bhopal RS, Brewster DH. Policy for home or hospice as the preferred place of death from cancer: Scottish Health and Ethnicity Linkage Study population cohort shows challenges across all ethnic groups in Scotland. BMJ Support Palliat Care. 2015;5(4):443–51.

    PubMed  Google Scholar 

  57. Kristiansen M, Irshad T, Worth A, Bhopal R, Lawton J, Sheikh A. The practice of hope: a longitudinal, multi-perspective qualitative study among South Asian Sikhs and Muslims with life-limiting illness in Scotland. Ethn Health. 2014;19(1):1–19.

    PubMed  Google Scholar 

  58. Torensma M, Onwuteaka-Philipsen BD, Strackee KL, Oosterveld-Vlug MG, de Voogd X, Willems DL, et al. How to help researchers in palliative care improve responsiveness to migrants and other underrepresented populations: developing and testing a self-assessment instrument. BMC Palliat Care. 2019;18(1):1–11.

    Google Scholar 

  59. Samanta J, Samanta A. Exploring cultural values that underpin the ethical and legal framework of end-of-life care: a focus group study of South Asians. J Med Law Ethics. 2013;1(1):63–74.

    Google Scholar 

  60. Shabnam J, Timm H, Nielsen DS, Raunkiaer M. Palliative care for older South Asian migrants: a systematic review. Palliat Support Care. 2020;18(3):346–58.

    PubMed  Google Scholar 

  61. Fang ML, Sixsmith J, Sinclair S, Horst G. A knowledge synthesis of culturally- and spiritually-sensitive end-of-life care: findings from a scoping review. BMC Geriatr. 2016;16:107.

    PubMed  PubMed Central  Google Scholar 

  62. Rechel B, Mladovsky P, Ingleby D, Mackenbach JP, McKee M. Migration and health in an increasingly diverse Europe. The Lancet. 2013;381(9873):1235–45.

    Google Scholar 

  63. Lolle H, Torpe L. Growing ethnic diversity and social trust in European societies. Comp Eur Polit. 2011;9(2):191–216.

    Google Scholar 

  64. Rahemi Z, Williams CL. Does ethnicity matter—cultural factors underlying older adults’ end-of-life care preferences: a systematic review. Geriatr Nurs. 2020;41(2):89–97.

    PubMed  Google Scholar 

  65. Hiam L, Gionakis N, Holmes S, McKee M. Overcoming the barriers migrants face in accessing health care. Public Health. 2019;172:89–92.

    CAS  PubMed  Google Scholar 

  66. Cain C, Cain CL, Surbone A, Elk R, Kagawa-Singer M. Culture and palliative care: preferences, communication, meaning, and mutual decision making. J Pain Symptom Manage. 2018;55(5):1408–19.

    PubMed  Google Scholar 

  67. Harding R, Simms V, Calanzani N, Higginson I, Hall S, Gysels M, et al. If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology. 2013;22(10):2298–305.

    CAS  PubMed  Google Scholar 

  68. Clark D, Baur N, Clelland D, Garralda E, López-Fidalgo J, Connor S, et al. Mapping levels of palliative care development in 198 countries: the situation in 2017. J Pain Symptom Manag. 2020;59(4):794–807.

    Google Scholar 

  69. Radbruch L, Payne S. White paper on standards and norms for hospice and palliative care in Europe: part 1. Eur J Palliat Care. 2009;16(6):278–89.

    Google Scholar 

  70. Sørensen K, Van den Broucke S, Fullam J, Doyle G, Pelikan J, Slonska Z, et al. Health literacy and public health: a systematic review and integration of definitions and models. BMC Public Health. 2012;12(1):80.

    PubMed  PubMed Central  Google Scholar 

  71. Murtagh FE, Bausewein C, Verne J, Groeneveld EI, Kaloki YE, Higginson IJ. How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliat Med. 2014;28(1):49–58.

    PubMed  Google Scholar 

  72. Organization WH. Planning and implementing palliative care services: a guide for programme managers. Report No. 9241565411. Geneva: WHO; 2016.

    Google Scholar 

  73. Booth A, Moore G, Flemming K, Garside R, Rollins N, Tunçalp Ö, et al. Taking account of context in systematic reviews and guidelines considering a complexity perspective. BMJ Glob Health. 2019;4(Suppl 1):e000840.

    PubMed  PubMed Central  Google Scholar 

  74. Matlin SA, Depoux A, Schütte S, Flahault A, Saso L. Migrants’ and refugees’ health: towards an agenda of solutions. Public Health Rev. 2018;39:1–55.

    Google Scholar 

  75. Cain CL, Surbone A, Elk R, Kagawa-Singer M. Culture and palliative care: preferences, communication, meaning, and mutual decision making. J Pain Symptom Manag. 2018;55(5):1408–19.

    PubMed  Google Scholar 

  76. Kelley AS, Morrison RS. Palliative care for the seriously ill. N Engl J Med. 2015;373(8):747–55.

    CAS  PubMed  PubMed Central  Google Scholar 

  77. Statistik D. Indvandrere og efterkommere. Lokaliseret. 2019;18:2019.

  78. Speck P, Ellershaw J, Wilkinson S. Spiritual/religious issues in care of the dying. Care of Dying A pathway to excellence. 2011. p. 106–26.

Download references

Acknowledgements

The authors would like to thank Librarian, Anne Faber Hansen for her contribution in the search strategy and Professor David Clark for his help in the English revision of the manuscript.

Funding

The first author received financial support for her PhD study from The Danish Cancer Society, case number—R210-A12932-18-S64. This work is a part of her PhD.

Author information

Authors and Affiliations

  1. REHPA, Danish Knowledge Centre for Rehabilitation and Palliative Care, University of Southern Denmark, Vestergade 17, 5800, Nyborg, Denmark

    Jahan Shabnam & Mette Raunkiaer

  2. National Institute of Public Health, University of Southern Denmark, Copenhagen, Denmark

    Helle Ussing Timm

  3. Migrant Health Clinic, Odense University Hospital, University of Southern Denmark, Odense, Denmark

    Dorthe Susanne Nielsen

Authors
  1. Jahan Shabnam
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Helle Ussing Timm
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Dorthe Susanne Nielsen
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Mette Raunkiaer
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

JS and MR conceptualize and designed the study. JS was responsible for data collection, extraction, analysis and writing initial draft of the manuscript. MR supervised and guided throughout the entire process. HT and DN reviewed and edited the paper in the writing process. All authors approved the final paper.

Corresponding author

Correspondence to Jahan Shabnam.

Ethics declarations

Conflict of interests

The authors declare that they have no conflict of interests.

Ethical Approval

Approval for this research was obtained from The Danish National Committee on Bioethics, number 61269.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Shabnam, J., Timm, H.U., Nielsen, D.S. et al. Palliative Care Utilization Among Non-Western Migrants in Europe: A Systematic Review. J Immigrant Minority Health 24, 237–255 (2022). https://doi.org/10.1007/s10903-021-01302-8

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10903-021-01302-8

Keywords

Search

Navigation