Journal of Bioethical Inquiry

, Volume 12, Issue 4, pp 687–698

Roma Women’s Perspectives on End-of-Life Decisions

  • Patricia Peinado-Gorlat
  • Francisco Javier Castro-Martínez
  • Beatriz Arriba-Marcos
  • Miguel Melguizo-Jiménez
  • Inés Barrio-Cantalejo
Original Research

Abstract

Spain’s Roma community has its own cultural and moral values. These values influence the way in which end-of-life decision-making is confronted. The objective of this study was to explore the perspective of Roma women on end-of-life decision-making. It was a qualitative study involving thirty-three Roma women belonging to groups for training and social development in two municipalities. We brought together five focus groups between February and December 2012. Six mediators each recruited five to six participants. We considered age and care role to be the variables that can have the most influence on opinion regarding end-of-life decision-making. We considered the discussion saturated when the ideas expressed were repeated. Data analysis was carried out according to five steps: describing, organizing, connecting, corroborating/legitimating, and representing the account. The main ideas gleaned from the data were as follows: (1) the important role of the family in end-of-life care, especially the role of women; (2) the large influence of community opinion over personal or family decisions, typical of closed societies; (3) the different preferences women had for themselves compared to that for others regarding desired end-of-life care; (4) unawareness or rejection of advance directives. Roma women wish for their healthcare preferences to be taken into account, but “not in writing.” The study concluded that the success of end-of-life healthcare in Roma families and of their involvement in the making of healthcare decisions depends upon considering and respecting their idiosyncrasy.

Keywords

Decision-making End-of-life issues Ethnicity Roma women 

References

  1. Acton, T. 1983. Gypsies. Madrid: Espasa-Calpe.Google Scholar
  2. Arroz, T.R., Y. Dobry, V. Novakovic, and J.M. Appel. 2012. The importance of patient–provider communication in end-of-life care. Journal of Bioethical Inquiry 9(4): 439–441.CrossRefGoogle Scholar
  3. Ayala Rubio, A. 2008. Actitudes y pautas de comportamiento de la población gitana de la Comunidad de Madrid en relación a su salud [Attitudes and behavioural patterns of the Roma population of the Community of Madrid in relation to their health]. http://bit.ly/187JVxW. Accessed October 10, 2013.
  4. Barrio-Cantalejo, I.M., P. Simón-Lorda, A. Molina-Ruiz, et al. 2013. Stability over time in the preferences of older persons for life-sustaining treatment. Journal of Bioethical Inquiry 10(1): 103–114.PubMedCrossRefGoogle Scholar
  5. Barrio-Cantalejo, I.M., I. Toral-López, I. Carmona Rega, et al. 2008. Life support treatment preferences in critical health situations. Enfermería Clínica 18(6): 289–295.PubMedCrossRefGoogle Scholar
  6. Begoña Campos, B., B. Cardiel, A. García, M. Laparra, J.M. del Pozo, and I. Legal. 2006. The family in the Roma community. In Social status and trends of change in the Roma community, edited  by ALTER Research Group, 25–42. Pamplona: University of Navarra.Google Scholar
  7. Blackhall, L.J., S.T. Murphy, G. Frank, V. Michel, and S. Azen. 1995. Ethnicity and attitudes toward patient autonomy. The Journal of the American Medical Association 274(10): 820–825.PubMedCrossRefGoogle Scholar
  8. Braun, L., A. Fausto-Sterling, D. Fullwiley, et al. 2007. Racial categories in medical practice: How useful are they? PloS Medicine 4(9): e271. doi:10.1371/journal.pmed.0040271.PubMedPubMedCentralCrossRefGoogle Scholar
  9. Braun, U., R. Beyth, M. Ford, and L. McCullough. 2008. Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making. Journal of General Internal Medicine 23(3): 267–274.PubMedPubMedCentralCrossRefGoogle Scholar
  10. Bullock, K. 2011. The influence of culture on end-of-life decision-making. Journal of Social Work in End-of-Life and Palliative Care 7(1): 83–98.PubMedCrossRefGoogle Scholar
  11. Carrasco-Garrido, P., A. López de Andrés, V. Hernández Barrera, I. Jiménez-Trujillo, and R. Jiménez-García. 2010. Health status of Roma women in Spain. European Journal of Public Health 21(6): 793–798.PubMedCrossRefGoogle Scholar
  12. Cerrillo Vidal, J.A., and R. Serrano del Rosal. 2010. Una aproximación a los discursos de los andaluces ante la calidad en el morir [An approach to the discourse of quality Andalusian before dying]. http://bit.ly/12YHfgl. Accessed April 1, 2013.
  13. Coolen, P.R. 2012. Cultural relevance in end-of-life care. EthnoMed, May 1. http://bit.ly/196ZdSv or http://ethnomed.org/clinical/end-of-life/cultural-relevance-in-end-of-life-care. Accessed May 12, 2013.
  14. Crabtree, B.F., and W.L. Miller. 1999. Doing qualitative research, 2nd ed. Thousand Oaks, CA: Sage Publications.Google Scholar
  15. Degenholtz, H.B., S.B. Thomas, and M.J. Miller. 2003. Race and the intensive care unit: Disparities and preferences for end-of-life care. Critical Care Medicine 31(5): 373–378.CrossRefGoogle Scholar
  16. Durán, M.A. 2004. Death quality as a component of the quality of life. Spanish Journal of Sociological Research 106: 9–32.Google Scholar
  17. Plataforma del Voluntariado de la Provincia de Badajoz (Volunteers Platform Badajoz). No date. Minorías étnicas [Ethnic minorities]. Volured.com. http://bit.ly/10Veqzg. Accessed March 13, 2013.
  18. Ferrer, F. 2003. The health status of Roma in Spain: A review of the literature. Gaceta Sanitaria 17(3): 2–8.PubMedCrossRefGoogle Scholar
  19. Frazier, L.M., V.A. Miller, D.V. Horbelt, J.E. Demore, B.E. Miller, and A.M. Pashcal. 2010. Comparison of focus groups on cancer and employment conducted face to face or by telephone. Qualitative Health Research 20(5): 617–627.PubMedPubMedCentralCrossRefGoogle Scholar
  20. Jairo Vanegas, L., C. Marcelo Villalón, and Y. Carlos Valenzuela. 2008. Considerations about the use of the variable race/ethnicity in epidemiologic research for public health: A report of research inequities. Medical Journal of Chile 136(5): 637–644.Google Scholar
  21. Johnson, K.S., M. Kuchibhatla, and J.A. Tulsky. 2008. What explains racial differences in the use of advance directives and attitudes toward hospice care? Journal of the American Geriatrics Society 56(10): 1953–1958.PubMedPubMedCentralCrossRefGoogle Scholar
  22. Kwak, J., and W. Haley. 2005. Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist 45(5): 634–641.PubMedCrossRefGoogle Scholar
  23. Kitzinger, J. 1995. Qualitative research: Introducing focus groups. British Medical Journal 311(7000): 299–302.PubMedPubMedCentralCrossRefGoogle Scholar
  24. Lago Ávila, M.J. 2000. Las minorías étnicas en España: Entre la exclusión y la inclusión [Ethnic minorities in Spain: Between exclusion and inclusion]. Tropelías: Revista de Teoría de la Literatura y Literatura Comparada, no. 11: 81–95.Google Scholar
  25. Lane, P., S. Spencer, and M. McCready. 2012. Perspectives on ageing in Gypsy families. Joseph Rowntree Foundation, January. http://bit.ly/11eg97E. Accessed May 12, 2013.
  26. Maly, R.C., Y. Umezawa, C.T. Ratliff, and B. Leake. 2006. Racial/ethnic group differences in treatment decision-making and treatment received among older breast carcinoma patients. Cancer 106(4): 957–965.PubMedCrossRefGoogle Scholar
  27. Mason, J. 2002. Qualitative researching, 2nd ed. Manchester: Sage Publications Ltd.Google Scholar
  28. Mendizabal, I., O. Lao, U.M. Marigorta, et al. 2012. Reconstructing the population history of European Romani from genome-wide data. Current Biology 22(24): 2342–2349.PubMedCrossRefGoogle Scholar
  29. Miles, M.B., and A.M. Huberman. 1994. Qualitative data analysis, 2nd ed. Thousand Oaks, CA: Sage Publications.Google Scholar
  30. Moreno, J. 2006. A qualitative study of the Roma minority: The validity of the components of the social structure. Documentación Social 143: 143–158.Google Scholar
  31. Morse, J. 1995. The significance of saturation. Qualitative Health Research 5(2): 147–149.CrossRefGoogle Scholar
  32. Muni, S., R.A. Engelberg, P.D. Treece, D. Dotolo, and J.R. Curtis. 2011. The influence of race/ethnicity and socioeconomic status on end-of-life care in the ICU. Chest 139(5): 1025–1033.PubMedPubMedCentralCrossRefGoogle Scholar
  33. Murphy, S., and S.J. Genuis. 2013. Freedom of conscience in health care: Distinctions and limits. Journal of Bioethical Inquiry 10(3): 347–354.PubMedPubMedCentralCrossRefGoogle Scholar
  34. Paniego, J.A. 2001. Análisis de la juventud gitana de alta promoción sociocultural [Analysis of high-Roma youth cultural promotion]. Revista Bimestral de la Fundación Secretariado Gitano 9(1): 24–30.Google Scholar
  35. Parry, P., P. Van Cleemput, J. Peters, S. Walters, K. Thomas, and C. Cooper. 2007. Health status of gypsies and travellers in England. Journal of Epidemiology and Community Health 61(3): 198–204.PubMedPubMedCentralCrossRefGoogle Scholar
  36. Peters, J., G.D. Parry, P. Van Cleemput, J. Moore, C.L. Cooper, and S.J. Walters. 2009. Health and use of health services: A comparison between Gypsies and Travellers and other ethnic groups. Ethnicity and Health 14(4): 359–377.PubMedCrossRefGoogle Scholar
  37. Rich, S.E., A.L. Gruber-Baldini, C.C. Quinn, and S.I. Zimmerman. 2009. Discussion as a factor in the racial disparity in advance directive completion at nursing home admission. Journal of the American Geriatrics Society 57(1): 146–152. doi:10.1111/j.1532-5415.2008.02090.x.PubMedPubMedCentralCrossRefGoogle Scholar
  38. Roma Secretariat Foundation. 2000. Health and the Roma community. Madrid: Roma Secretariat Foundation Area of Health.Google Scholar
  39. Roma Secretariat Foundation. 2006. Handbook for action in the area of health services with the Roma community. Madrid: Roma Secretariat Foundation Area of health.Google Scholar
  40. Santiago Camacho, C. 1997. Nuestras culturas: Unidad didáctica 4: Dossier 1 [Our cultures: Learning unit 4: Dossier 1]. http://bit.ly/1aaMZpJ. Accessed March 3, 2013.
  41. Searight, H.R., and J. Gafford. 2005. Cultural diversity at the end of life: Issues and guidelines for family physicians. American Family Physician 71(3): 515–522.PubMedGoogle Scholar
  42. Shrank, W.H., J.S. Kutner, T. Richardson, R.A. Mularski, S. Fischer, and M. Kagawa-Singer. 2005. Focus group findings about the influence of culture on communication preferences in end-of-life care. Journal of General Internal Medicine 20(8): 703–709.PubMedPubMedCentralCrossRefGoogle Scholar
  43. Sierra, E. 2008. María Ángeles Durán, socióloga: “Las decisiones que afectan a un enfermo terminal las toman otras personas por él” [Maria Angeles Duran, a sociologist: “Decisions affecting the terminally ill to take other people for him”]. Ideal.es, January 21. http://bit.ly/14Us6xU or http://www.ideal.es/granada/20080121/sociedad/maria-angeles-duran-sociologa-20080121.html. Accessed February 17, 2013.
  44. Smith, A.K., E.P. McCarthy, E. Paulk, et al. 2008. Racial and ethnic differences in advance care planning among patients with cancer: Impact of terminal illness acknowledgement, religiousness, and treatment preferences. Journal of Clinical Oncology 26(25): 4131–4137.PubMedPubMedCentralCrossRefGoogle Scholar
  45. Washington, K., D. Bickel-Swenson, and N. Stephens. 2008. Barriers to hospice use among African Americans: A systematic review. Health and Social Work 33(1): 267–274.PubMedCrossRefGoogle Scholar
  46. Vig, E.K., H. Starks, J. Taylor, E. Hopley, and K. Fryer-Edwards. 2007. Surviving surrogate decision-making: What helps and hampers the experience of making medical decisions for others. Journal of General Internal Medicine 22(9): 1274–1279.PubMedPubMedCentralCrossRefGoogle Scholar
  47. Zeman, C.L., D.E. Depken, and D.S. Senchina. 2003. Roma health issues: A review of the literature and discussion. Ethnicity and Health 8(3): 223–249.PubMedCrossRefGoogle Scholar

Copyright information

© Journal of Bioethical Inquiry Pty Ltd. 2015

Authors and Affiliations

  • Patricia Peinado-Gorlat
    • 1
  • Francisco Javier Castro-Martínez
    • 2
  • Beatriz Arriba-Marcos
    • 3
  • Miguel Melguizo-Jiménez
    • 2
  • Inés Barrio-Cantalejo
    • 2
  1. 1.FIBAOGranadaSpain
  2. 2.Almanjayar Primary Health Care Centre, Metropolitan-Granada Health DistrictGranadaSpain
  3. 3.Albaycin Primary Health Care Centre, Metropolitan-Granada Health DistrictGranadaSpain

Personalised recommendations