Skip to main content
SpringerLink
Log in

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

  • Original Research
  • Published:
Journal of Bioethical Inquiry Aims and scope Submit manuscript

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.

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

Notes

  1. Basic Law 41/2002, of November 14, 2002, for the Regulation of Patient Autonomy, Rights and Obligations with Regards to Medical Information and Documentation. BOE no. 274.

References

  • Acton, T. 1983. Gypsies. Madrid: Espasa-Calpe.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

  • 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.

    Article  PubMed  CAS  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

  • 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.

  • Crabtree, B.F., and W.L. Miller. 1999. Doing qualitative research, 2nd ed. Thousand Oaks, CA: Sage Publications.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • Durán, M.A. 2004. Death quality as a component of the quality of life. Spanish Journal of Sociological Research 106: 9–32.

    Google Scholar 

  • 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.

  • Ferrer, F. 2003. The health status of Roma in Spain: A review of the literature. Gaceta Sanitaria 17(3): 2–8.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Kitzinger, J. 1995. Qualitative research: Introducing focus groups. British Medical Journal 311(7000): 299–302.

    Article  PubMed  CAS  PubMed Central  Google Scholar 

  • 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.

  • 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.

  • 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.

    Article  PubMed  Google Scholar 

  • Mason, J. 2002. Qualitative researching, 2nd ed. Manchester: Sage Publications Ltd.

    Google Scholar 

  • 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.

    Article  PubMed  CAS  Google Scholar 

  • Miles, M.B., and A.M. Huberman. 1994. Qualitative data analysis, 2nd ed. Thousand Oaks, CA: Sage Publications.

    Google Scholar 

  • 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 

  • Morse, J. 1995. The significance of saturation. Qualitative Health Research 5(2): 147–149.

    Article  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • Murphy, S., and S.J. Genuis. 2013. Freedom of conscience in health care: Distinctions and limits. Journal of Bioethical Inquiry 10(3): 347–354.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • Roma Secretariat Foundation. 2000. Health and the Roma community. Madrid: Roma Secretariat Foundation Area of Health.

    Google Scholar 

  • 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 

  • 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.

  • 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.

    PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

Download references

Funding

The authors received financial support for the research, authorship, and publication of this article from the Ministry of Health of Andalusia (Project PI-0002-2010).

Statement of Competing Interests

No potential conflicts of interest are reported by the authors.

Author information

Authors and Affiliations

  1. FIBAO, Granada, Spain

    Patricia Peinado-Gorlat

  2. Almanjayar Primary Health Care Centre, Metropolitan-Granada Health District, Granada, Spain

    Francisco Javier Castro-Martínez, Miguel Melguizo-Jiménez & Inés Barrio-Cantalejo

  3. Albaycin Primary Health Care Centre, Metropolitan-Granada Health District, Granada, Spain

    Beatriz Arriba-Marcos

Authors
  1. Patricia Peinado-Gorlat
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Francisco Javier Castro-Martínez
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Beatriz Arriba-Marcos
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Miguel Melguizo-Jiménez
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Inés Barrio-Cantalejo
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Patricia Peinado-Gorlat.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Peinado-Gorlat, P., Castro-Martínez, F.J., Arriba-Marcos, B. et al. Roma Women’s Perspectives on End-of-Life Decisions. Bioethical Inquiry 12, 687–698 (2015). https://doi.org/10.1007/s11673-015-9656-2

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11673-015-9656-2

Keywords

Search

Navigation