Skip to main content

Palliative and End-of-Life Care

  • Chapter
  • First Online:
Refugee Health Care

Abstract

Although refugees tend to have lower mortality rates than the locally born population, they are not immune to terminal illness. When refugees do become ill, they may have particularly challenging paths related to their prior exposures, trauma, and cultural beliefs. Many challenges that refugees face in accessing healthcare can be compounded when it comes to end-of-life care. This chapter reviews definitions of palliative care and then proposes a framework for culturally sensitive assessment and management of end-of-life care issues in refugees. Ethical considerations in end-of-life care are also reviewed.

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

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 89.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 119.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Aldridge RW, Nellums LB, Bartlett S, Barr AL, Patel P, Burns R, et al. Global patterns of mortality in international migrants: a systematic review and meta-analysis. Lancet. 2018;392(10164):2553–66.

    Article  Google Scholar 

  2. Gardner SE, Abbott LI, Fiala CA, Rakel BA. Factors associated with high pain intensity during wound care procedures: a model. Wound Repair Regen. 2017;25(4):558–63.

    Article  Google Scholar 

  3. Li JY, Liu C, Zou LQ, Huang MJ, Yu CH, You GY, et al. To tell or not to tell: attitudes of Chinese oncology nurses towards truth telling of cancer diagnosis. J Clin Nurs. 2008;17(18):2463–70.

    Article  Google Scholar 

  4. Shahidi J. Not telling the truth: circumstances leading to concealment of diagnosis and prognosis from cancer patients. Eur J Cancer Care (Engl). 2010;19(5):589–93.

    Article  CAS  Google Scholar 

  5. Mitchell JL. Cross-cultural issues in the disclosure of cancer. Cancer Pract. 1998;6(3):153–60.

    Article  CAS  Google Scholar 

  6. 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.

    Google Scholar 

  7. Selsky C, Kreling B, Luta G, Makgoeng SB, Gomez-Duarte J, Barbo AG, et al. Hospice knowledge and intentions among Latinos using safety-net clinics. J Palliat Med. 2012;15(9):984–90.

    Article  Google Scholar 

  8. Eckemoff EH, Sudha S, Wang D. End of life care for older Russian immigrants - perspectives of Russian immigrants and hospice staff. J Cross Cult Gerontol. 2018;33(3):229–45.

    Article  Google Scholar 

  9. Karapetyan L, Dawani O, Laird-Fick HS. End-of-life care for an undocumented Mexican immigrant: resident perspective. J Palliat Care. 2018;33(2):63–4.

    Article  Google Scholar 

  10. Harhay MO, Halpern SD. End-of-life care among immigrants: disparities or differences in preferences? JAMA. 2017;318(15):1448–9.

    Article  Google Scholar 

  11. Ethnomed: end of life clinical topics. Available from: https://ethnomed.org/clinical/end-of-life/end-of-life-collage-example/.

  12. Care NCPfQP. clinical practice guidelines for quality palliative care. Richmond, 2018 [4:Available from: https://www.nationalcoalitionhpc.org/ncp/.

  13. Jackson J, Ahrenholz N. Evaluation and treatment of survivors of torture 2013 [Available from: ethnomed.org/clinical/torture/EvaluationandTreatmentofSurvivorsofTorture_rev.pdf/view.

  14. Lo B, Ruston D, Kates LW, Arnold RM, Cohen CB, Faber-Langendoen K, et al. Discussing religious and spiritual issues at the end of life: a practical guide for physicians. JAMA. 2002;287(6):749–54.

    Article  Google Scholar 

  15. Puchalski CM. Spirituality and end-of-life care: a time for listening and caring. J Palliat Med. 2002;5(2):289–94.

    Article  Google Scholar 

  16. Puchalski CM. The FICA spiritual history tool #274. J Palliat Med. 2014;17(1):105–6.

    Article  Google Scholar 

  17. Saeed F, Kousar N, Aleem S, Khawaja O, Javaid A, Siddiqui MF, et al. End-of-life care beliefs among Muslim physicians. Am J Hosp Palliat Care. 2015;32. United States: The Author(s) 2014:388–92.

    Article  Google Scholar 

  18. Kobewka D, Ronksley P, McIsaac D, Mulpuru S, Forster A. Prevalence of symptoms at the end of life in an acute care hospital: a retrospective cohort study. CMAJ Open. 2017;5(1):E222–E8.

    Article  Google Scholar 

  19. Smith AK, Cenzer IS, Knight SJ, Puntillo KA, Widera E, Williams BA, et al. The epidemiology of pain during the last 2 years of life. Ann Intern Med. 2010;153(9):563–9.

    Article  Google Scholar 

  20. Givler A, Maani-Fogelman PA. Cultural competence in pain and palliative care. StatPearls. Treasure Island: StatPearls Publishing LLC; 2018.

    Google Scholar 

  21. Groninger H, Vijayan J. Pharmacologic management of pain at the end of life. Am Fam Physician. 2014;90(1):26–32.

    Google Scholar 

  22. Warden V, Hurley AC, Volicer L. Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale. J Am Med Dir Assoc. 2003;4(1):9–15.

    Article  Google Scholar 

  23. Campbell ML, Templin T, Walch J. A respiratory distress observation scale for patients unable to self-report dyspnea. J Palliat Med. 2010;13(3):285–90.

    Article  Google Scholar 

  24. Baker N, Armour K, Meystre C, Redwood S, Dawson A. PA14 the legacy of cancer: why a health promoting approach is so important in palliative care. BMJ Support Palliat Care. 2015;5(Suppl 1):A23–4.

    Article  Google Scholar 

  25. Silva MD, Genoff M, Zaballa A, Jewell S, Stabler S, Gany FM, et al. Interpreting at the end of life: a systematic review of the impact of interpreters on the delivery of palliative care services to cancer patients with limited English proficiency. J Pain Symptom Manag. 2016;51(3):569–80.

    Article  Google Scholar 

  26. Norris WM, Wenrich MD, Nielsen EL, Treece PD, Jackson JC, Curtis JR. Communication about end-of-life care between language-discordant patients and clinicians: insights from medical interpreters. J Palliat Med. 2005;8(5):1016–24.

    Article  Google Scholar 

  27. Schenker Y, Fernandez A, Kerr K, O’Riordan D, Pantilat SZ. Interpretation for discussions about end-of-life issues: results from a National Survey of Health Care Interpreters. J Palliat Med. 2012;15(9):1019–26.

    Article  Google Scholar 

  28. Hadziabdic E, Hjelm K. Working with interpreters: practical advice for use of an interpreter in healthcare. Int J Evid Based Healthc. 2013;11(1):69–76.

    Article  Google Scholar 

  29. Hersh L, Salzman B, Snyderman D. Health literacy in primary care practice. Am Fam Physician. 2015;92(2):118–24.

    Google Scholar 

  30. Dang BN, Westbrook RA, Njue SM, Giordano TP. Building trust and rapport early in the new doctor-patient relationship: a longitudinal qualitative study. BMC Med Educ. 2017;17(1):32.

    Article  Google Scholar 

  31. Leland BD, Torke AM, Wocial LD, Helft PR. Futility disputes: a review of the literature and proposed model for dispute navigation through trust building. J Intensive Care Med. 2017;32(9):523–7.

    Article  Google Scholar 

  32. DeMartino ES, Dudzinski DM, Doyle CK, Sperry BP, Gregory SE, Siegler M, et al. Who decides when a patient can’t? statutes on alternate decision makers. N Engl J Med. 2017;376(15):1478–82.

    Article  Google Scholar 

  33. Pochard F, Azoulay E, Chevret S, Lemaire F, Hubert P, Canoui P, et al. Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity. Crit Care Med. 2001;29(10):1893–7.

    Article  CAS  Google Scholar 

  34. Azoulay E, Pochard F, Kentish-Barnes N, Chevret S, Aboab J, Adrie C, et al. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med. 2005;171(9):987–94.

    Article  Google Scholar 

  35. Angus DC, Barnato AE, Linde-Zwirble WT, Weissfeld LA, Watson RS, Rickert T, et al. Use of intensive care at the end of life in the United States: an epidemiologic study. Crit Care Med. 2004;32. United States:638–43.

    Article  Google Scholar 

  36. Whitton S, Pittiglio LI. Critical care open visiting hours. Crit Care Nurs Q. 2011;34. United States:361–6.

    Article  Google Scholar 

  37. Kavic SM, Atweh N, Possenti PP, Ivy ME. The role of advance directives and family in end-of-life decisions in critical care units. Conn Med. 2003;67(9):531–4.

    Google Scholar 

  38. Tillyard AR. Ethics review: ’Living wills’ and intensive care--an overview of the American experience. Crit Care. 2007;11(4):219.

    Article  Google Scholar 

  39. Goodman MD, Tarnoff M, Slotman GJ. Effect of advance directives on the management of elderly critically ill patients. Crit Care Med. 1998;26(4):701–4.

    Article  CAS  Google Scholar 

  40. Johnson RF Jr, Baranowski-Birkmeier T, O’Donnell JB. Advance directives in the medical intensive care unit of a community teaching hospital. Chest. 1995;107(3):752–6.

    Article  Google Scholar 

  41. Hodde NM, Engelberg RA, Treece PD, Steinberg KP, Curtis JR. Factors associated with nurse assessment of the quality of dying and death in the intensive care unit. Crit Care Med. 2004;32(8):1648–53.

    Article  Google Scholar 

  42. Tonelli MR. Pulling the plug on living wills. A critical analysis of advance directives. Chest. 1996;110(3):816–22.

    Article  CAS  Google Scholar 

  43. Glavan BJ, Engelberg RA, Downey L, Curtis JR. Using the medical record to evaluate the quality of end-of-life care in the intensive care unit. Crit Care Med. 2008;36(4):1138–46.

    Article  Google Scholar 

  44. Kwak J, Haley WE. Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist. 2005;45(5):634–41.

    Article  Google Scholar 

  45. Orlovic M, Smith K, Mossialos E. Racial and ethnic differences in end-of-life care in the United States: evidence from the Health and Retirement Study (HRS). SSM Popul Health. 2019;7:100331.

    Article  Google Scholar 

  46. DeSanto-Madeya S, Nilsson M, Loggers ET, Paulk E, Stieglitz H, Kupersztoch YM, et al. Associations between United States acculturation and the end-of-life experience of caregivers of patients with advanced cancer. J Palliat Med. 2009;12(12):1143–9.

    Article  Google Scholar 

  47. Sudore RL, Schillinger D, Katen MT, Shi Y, Boscardin WJ, Osua S, et al. Engaging diverse English- and Spanish-speaking older adults in advance care planning: the PREPARE randomized clinical trial. JAMA Intern Med. 2018;178(12):1616–25.

    Article  Google Scholar 

  48. Cook D. Patient autonomy versus parentalism. Crit Care Med. 2001;29(2 Suppl):N24–5.

    Article  CAS  Google Scholar 

  49. Powazki R, Walsh D, Hauser K, Davis MP. Communication in palliative medicine: a clinical review of family conferences. J Palliat Med. 2014;17(10):1167–77.

    Article  Google Scholar 

  50. Cunningham TV, Scheunemann LP, Arnold RM, White D. How do clinicians prepare family members for the role of surrogate decision-maker? J Med Ethics. 2018;44(1):21–6.

    Article  Google Scholar 

  51. Garrido MM, Balboni TA, Maciejewski PK, Bao Y, Prigerson HG. Quality of life and cost of care at the end of life: the role of advance directives. J Pain Symptom Manag. 2014;49:428.

    Google Scholar 

  52. Alsolamy S. Islamic views on artificial nutrition and hydration in terminally ill patients. Bioethics. 2014;28(2):96–9.

    Article  Google Scholar 

  53. Del Rio N. The influence of Latino ethnocultural factors on decision making at the end of life: withholding and withdrawing artificial nutrition and hydration. J Soc Work End Life Palliat Care. 2010;6. United States:125–49.

    Article  Google Scholar 

  54. Bray Y, Goodyear-Smith F, Gott M. Transnationals’ experience of dying in their adopted country: a systematic review. J Palliat Med. 2015;18(1):76–81.

    Article  Google Scholar 

  55. van Andel T, van Onselen S, Myren B, Towns A, Quiroz D. “The medicine from behind”: the frequent use of enemas in western African traditional medicine. J Ethnopharmacol. 2015;174:637–43.

    Article  Google Scholar 

  56. Frenzel C, Teschke R. Herbal hepatotoxicity: clinical characteristics and listing compilation. Int J Mol Sci. 2016;17(5):588.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Margaret Isaac .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2020 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Molnar, A., Isaac, M. (2020). Palliative and End-of-Life Care. In: Annamalai, A. (eds) Refugee Health Care. Springer, Cham. https://doi.org/10.1007/978-3-030-47668-7_12

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-47668-7_12

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-47667-0

  • Online ISBN: 978-3-030-47668-7

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics