Abstract
Medical communication in Western-oriented countries is dominated by concepts of shared decision-making and patient autonomy. In interactions with Roma patients, these behavioral patterns rarely seem to be achieved because the culture and ethnicity have often been shown as barriers in establishing an effective and satisfying doctor–patient relationship. The study aims to explore the Roma’s beliefs and experiences related to autonomy and decision-making process in the case of a disease with poor prognosis. Forty-eight Roma people from two Romanian counties participated in semi-structured interviews, conducted by a research team from the University of Medicine and Pharmacy of Iasi. Participants were recruited among the chronically ill patients and caregivers. The Roma community opposes informing the terminal patients about their condition, the “silence conspiracy” being widely practiced. The family fully undertakes the right of decision making, thus minimizing the patient’s autonomy. We identified ethical dilemmas concerning autonomy, lack of patients’ real decision-making power, and paternalistic attitudes exerted firstly by the family and, on demand, by the physician. Instead, the Roma patient benefits from a very active support network, being accompanied at the hospital by numerous relatives. The patient’s right to make autonomous decisions promoted in the Western countries and stipulated by the Romanian law has diminished value in the Roma community. For the Roma, the understanding of dignity is not simply individual and personal, but it is closely related to their cultural particularities. Ignoring their cultural values could create conflicts between healthcare providers and community.
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References
Baban, A. 2002. Metodologia cercetarii calitative [qualitative research methodology]. Cluj-Napoca: Presa Universtitara Clujeana Publishing.
Bauer, M., and R. Nay. 2003. Family and staff partnerships in long-term care. A review of the literature. Journal of Gerontological Nursing 29(10): 46–53.
Beauchamp, T.L., and F.J. Childress. 2001. Principles of biomedical ethics, 5th ed. New York: Oxford University Press.
Cace, S., and C. Vladescu. 2004. The health status of the Roma population and their access to health care services. Bucharest: Expert Publishing House.
Carlson, A.L. 2007. Death in the nursing home: Resident, family, and staff perspectives. Journal of Gerontological Nursing 33(4): 32–41.
Cemlyn, S., M. Greenfields, S. Burnett, Z. Matthews and C. Whitwell. (2009). Inequalities experienced by gypsy and traveller communities: A review. University of Bristol: Bucks New University, Available online at http://www.equalityhumanrights.com/uploaded_files/research/12inequalities_experienced_by_gypsy_and_traveller_communities_a_review.pdf.
Chewning, B., C.L. Bylund, B. Shah, N.K. Arora, J.A. Gueguen, and G. Makoul. 2012. Patient preferences for shared decisions: A systematic review. Patient Education and Counseling 86: 9–18.
Costin-Sima, D. 2003. Starea de sănătate a romilor: evaluare, factori individuali Ş i instituţ ionali [The health status of the Roma. assessment, individual and institutional factors]. In Romii în România [Roma in Romania], ed. C. Zamfir, and M. Preda, 86–104. Bucharest: Expert Publishing House.
Degner, L.F., and J.A. Sloan. 1992. Decision making during serious illness: what roles do patients really want to play? J Clinical Epidemiol 45: 941–950.
Edwards, A., R. Evans, and G. Elwyn. 2003. Manufactured but not imported: New directions for research in shared decision making. Patient Education and Counseling 50: 33–38.
Fainzang, S. (2005). When doctors and patients lie to each other …. In Lying and illness. Power and performance, eds. van Dongen, E. & Fainzang, S., Amsterdam: Hel Spinuis, 36–55. Available on http://classiques.uqac.ca/contemporains/Fainzang_sylvie/when_doctors_patiens_lie/when_doctors_patiens_lie_texte.html.
Fins, J.J., M.D. Bacchetta, and F.G. Miller. 1997. Clinical pragmatism: A method of moral problem solving. Kennedy Institute of Ethics Journal 7(2): 129–145.
Földes, M.E and A. Covaci. (2011). Research on Roma health and access to healthcare: state of the art and future challenges. International Journal of Public Health 10. Available online at http://www.soros.org/initiatives/health/focus/roma/articles_publications/publications/research-roma-health-20111005/research-on-roma-health-20111005.pdf.
Fournel Bettendorff, C. (2008).“Dans la vie, faut pas gagner …”. La perception de la santé chez les manush’ de La Loire, thesis presented to the Faculty of Medicine “Jacques Lisfranc”, University of Saint Etienne. Available at www.urps-med-ra.fr/upload/editor/These_FOURNEL_1265018677748.pdf.
Gaston, C.M., and G. Mitchell. 2005. Information giving and decision-making in patients with advanced cancer: A systematic review. Social Science and Medicine 61: 2252–2264.
Gjerberg, E., R. Forde, R. Pedersen, and G. Bollig. 2010. Ethical challenges in the provision of end-of-life care in Norwegian nursing homes. Social Science and Medicine 71: 677–684.
Goodridge, D., J.B. Bond Jr, C. Cameron, and E. McKean. 2005. End-of-life care in a nursing home: a study of family, nurse and healthcare aide perspectives. International Journal of Palliative Nursing 11(5): 226–232.
Goward, P., J. Repper, L. Appleton, and T. Hagan. 2006. Crossing boundaries. Identifying and meeting the mental health needs of Gypsies and Travellers. Journal of Mental Health 15(3): 315–327.
Grigore, D. 2001a. Curs de antropologie si folclor rrom: introducere în studiul elementelor de cultura traditionala ale identitatii contemporane [Anthropology and Roma folklore course: an introduction to the study of traditional culture elements of the contemporary identity]. Bucharest: Credis Publishing.
Grigore, D. (2001b). Rromanipen-ul (rromani dharma) şi mistica familiei. Familia tradiţională în comunităţile de rromi din arealul românesc [Rromani Law and the mysticism of the family. The traditional family within Roma communities in Romanian area]. Bucharest: Miniprint Publishing.
Gudykunst, W.B. 1994. Bridging differences: Effective intergroup communication. California: Sage.
Hajioff, S. and M. McKee. (2000). The health of the Roma people: A review of the published literature. Journal of Epidemiology Community Health 54:864–869. Available online at http://jech.bmj.com/content/54/11/864.long.
Hall, C.C.I. 1997. Cultural malpractice: The growing obsolescence of psychology with the canging US Population. American Psychologist 52: 642–651.
Herzfeld, M. 2001. Anthropology: Theoretical practice in culture and society. Oxford: Blackwell Publisher.
Ho, A. 2006. Family and informed consent un multicultural setting. The American Journal of Bioethics 6(1): 26–28.
Honer, D. and P. Hoppie. (2004). The enigma of the Gypsy patient. RN Magazine 67(8):33–36. Available online at http://rn.modernmedicine.com/rnweb/article/articleDetail.jsp?id=114152.
Kalvemark, S., A.T. Hoglund, M.G. Hansson, P. Westerholm, and B. Arnetz. 2004. Living with conflicts-ethical dilemmas and moral distress in the health care system. Social Science and Medicine 58(6): 1075–1084.
Kleinig, J. 1983. Paternalism. Totowa, New Jersey: Rowman & Allanheld.
Kolarcik, P., A. Madarasova Geckova, O. Orosova, J.P. van Dijk and S.A. Reijneveld. (2009). To what extent does socioeconomic status explain differences in health between Roma and non-Roma adolescents in Slovakia? Social Science and Medicine 68:1279–1284. Available online at http://www.czr.si/dokumenti/5/2/2011/SSM6618_800.pdf.
Kolarcik, P., A. Madarasova Geckova, O. Orosova, J.P. van Dijk, and S.A. Reijneveld. 2010. Predictors of health-endangering behaviour among Roma and non-Roma adolescents in Slovakia by gender. Journal of Epidemiology Community Health 64: 1043–1048.
Kósa, K., and R. Ádány. 2007. Studying vulnerable populations. Lessons from the Roma minority. Epidemiology 18(3): 290–299.
Lauter, D. (2010). Thousands protest deportations of Gypsy immigrants in France. Los Angeles Times. Available at http://articles.latimes.com/2010/sep/04/world/la-fg-france-protests-20100905 (published on September 04, 2010, retrieved on November 16, 2011).
Lehti, A. and B. Mattsona. (2001). Health, attitude to care and pattern of attendance among gypsy women—a general practice perspective, Family Practice 18(4):445–448. Available at http://fampra.oxfordjournals.org/content/18/4/445.full.
Leninger, M. 1995. Transcultural nursing: Concepts, theories, research, and practice. Columbus, OH: McGraw-Hill College Custom Series.
Masseria, C., P. Mladovsky, and C. Hernandez-Quevedo. 2010. The socioeconomic determinants of the health status of Roma in comparison with non-Roma in Bulgaria, Hungary and Romania. European Journal of Public Health 20(5): 549–554.
Mitty, E.L., and L.F. Post. 2008. Health care decision making. In Evidence-based geriatric nursing protocols for best practice, 3rd ed, ed. E. Capezuti, D. Zwicker, M. Mezey, and T. Fulmer, 521–538. NY: Springer Publishing Company.
Nesvadbova, L., J. Rutsch, A. Kroupa, and S. Sojka. 2000. The state of health of the Romany population in the Czech Republic. Central European Journal of Public Health 8(3): 141–149.
Parry, G., 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. Available online at http://www.shef.ac.uk/content/1/c6/02/55/71/GT%20report%20summary.pdf.
Paulik, E., L. Nagymajtényi, D. Easterling, and T. Rogers. 2011. Smoking behaviour and attitudes of Hungarian Roma and non-Roma population towards tobacco control policies. International Journal of Public Health 56: 485–491.
Pence, T., and J. Cantrall. 1990. Ethics in nursing: An anthology. NY: National League for Nursing.
Phillips, D., and T. Rathwell. 1986. Ethnicity and health: introduction and definitions. In Health, race and ethnicity, ed. T. Rathwell, and D. Phillips, 1–20. London: Croom Helm.
Perez-Stable, E.J., F. Sabogal, R. Otero-Sabogal, R.A. Hiatt, and S.J. McPhee. 1992. Misconceptions about cancer among Latinos and Anglos. JAMA 268: 3219–3223.
Phinney, J.S. 1996. When we talk about American ethnic groups, what do we mean? American Psychologist 51: 918–927.
Rechel, B., C.M. Blackburn, N.J. Spencer and B. Reche. (2009). Access to health care for Roma children in Central and Eastern Europe: findings from a qualitative study in Bulgaria. International Journal for Equity in Health 8:24–30. Available online at http://www.equityhealthj.com/content/8/1/24.
Reiter-Theil, S., M. Mertz, and B. Meyer-Zehnder. 2007. The complex roles of relatives in end-of-life decision-making: an ethical analysis. HEC Forum 19(4): 341–364.
Rosicova, K., A. Madarasova Geckova, M. Rosic, N. Speybroeck, J.W. Groothoff, and J.P. van Dijk. 2011. Socioeconomic factors, ethnicity and alcohol-related mortality in regions in Slovakia. What might a tree analysis add to our understanding? Health and Place 17: 701–709.
Rothenbacher, D., M.P. Lutz, and F. Porzsolt. 1997. Treatment decisions in palliative cancer care: Patients’ preferences for involvement and doctors’ knowledge about it. European Journal of Cancer 33(8): 1184–1189.
Sepkowitz, K.A. 2006. Health of the world’s Roma population. Lancet 367(9524): 1707–1708.
Singh, D. 2011. Attitudes and praxis of traditional forms of health care in a post-communist Romanian Romani community. Anthropology of East Europe Review 29(1): 127–140.
Sue, D.W., R.P. Bingham, L. Porche-Burke, and M. Vasquez. 1999. The diversification of psychology: A multicultural revolution. American Psychologist 54: 1061–1069.
Sue, S. 1998. In search of cultural competence in psychotherapy and counseling. American Psychologist 53: 440–448.
Sutherland, A. (1992a). Gypsies and health care. In Cross-cultural Medicine. The Western Journal of Medicine 157(3):276–280. Available online at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1011276/pdf/westjmed00085-0066.pdf.
Sutherland, A. 1992b. Health and illness among the Rom of California. Journal of Gypsy Lore Society 2(1): 19–59.
***The Code of Medical Ethics of the Romanian College of Physicians (2003). Available online on http://www.cmr.ro/content/view/385/38/. Accessed on 11 June 2012).
***The Romanian law no. 46 (2003), available online at http://www.dreptonline.ro/ legislatie/legea_drepturilor_pacientului.php (published on March 02, 2003, accessed on 17 Nov 2011).
Thomas, J. 1985. Gypsies and American medical care. Annals of Internal Medicine 102: 842–845.
Van Cleemput, P., G. Parry, K. Thomas, J. Peters, and C. Cooper. 2007. Health-related beliefs and experiences of Gypsies and Travellers: a qualitative study. Journal of Epidemiology Community Health 61(3): 205–210.
Veatch, R.M. 2000. Cross cultural perspectives in medical ethics, 2nd ed. London: Jones and Bartlett Publishers.
Wolcott, H. 1994. Transforming qualitative data: Description, analysis, interpretation. Thousand Oaks: Sage.
Young, M., and R.S. Klingle. 1996. Silent partners in medical care: A cross-cultural study of patient participation. Health Communication 8: 29–53.
Zamfir, E., and C. Zamfir. 1993. Ţiganii între ignorare şi îngrijorare [Gypsies between ignorance andconcern]. Bucharest: Alternative Publishing.
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.
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This text has been elaborated during the research within the postdoctoral scholarship in the program POSDRU/89/1.5/S/61879, “Postdoctoral Studies in Health Policy Ethics”.
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Roman, G., Enache, A., Pârvu, A. et al. Ethical issues in communication of diagnosis and end-of-life decision-making process in some of the Romanian Roma communities. Med Health Care and Philos 16, 483–497 (2013). https://doi.org/10.1007/s11019-012-9425-5
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DOI: https://doi.org/10.1007/s11019-012-9425-5