Palabras clave
diversidad cultural
espiritualidad
cuidados paliativos
disparidades en atención de salud language barrier
cultural diversity
spirituality
palliativecare
health care disparities
Cómo citar
Resumen
Objetivos: Conocer las causas de las disparidades en salud que sufren las minorías étnicas en países occidentales en la atención al final de la vida, especialmente de la comunidad sudasiática.
Metodología: Revisión bibliográfica de 44 artículos publicados entre 2015-2022 de un total de 193, seleccionados de las bases de datos PubMed y CINAHL, usando los descriptores MESH y búsqueda libre.
Resultados: La diversidad cultural es una realidad creciente en nuestro medio y conlleva retos asistenciales importantes. Las creencias, proceso de toma de decisiones, autonomía, significado del sufrimiento y manejo de síntomas son factores importantes en el abordaje de una persona enferma y su familia y dependen, en gran parte, de la cultura y los valores. Las inequidades en salud están presentes en nuestro sistema sanitario y las minorías étnicas son parte dela población afectada. El sistema sanitario está estructurado desde la cultura occidental, por lo que sus profesionales actúan, por inercia, desde esta postura.
Conclusiones: Para ofrecer unos cuidados paliativos de calidad es indispensable conocer las vivencias de las personas pertenecientes a minorías étnicas; poder realizar cambios de enfoque y educar en competencia cultural al personal asistencial para brindar una atención justa y holística, adecuada a los valores y necesidades de todas las personas. Son necesarios estudios en nuestro medio para evaluar la situación.
Citas
Alonso, A., (2007). Estrategia en Cuidados Paliativos del Sistema Nacional de salud. Gobierno de España. https://www.sanidad.gob.es/organizacion/sns/planCalidadSNS/pdf/excelencia/cuidadospali ativos-diabetes/CUIDADOS_PALIATIVOS/estrategiaCuidadosPaliativos.pdf
Barbero, J., Xavier, Gómez-Batiste, G., Maté, J., Dolors, M., Ortega, M. (2016). Manual para la atención psicosocial y espiritual a personas con enfermedades avanzadas Intervención psicológica y espiritual.
Cain, C. L., Surbone, A., Elk, R., & Kagawa-Singer, M. (2018). Culture and palliative care: Preferences, communication, meaning, and mutual decision making. J. Pain Symptom Manage., 55(5), 1408–1419. https://doi.org/10.1016/j.jpainsymman.2018.01.007
Cookson, R., Doran, T., Asaria, M., Gupta, I., & Mujica, F. P. (2021). The inverse care law re-examined: a global perspective. Lancet, 397(10276), 828–838. https://doi.org/10.1016/S0140-6736(21)00243-9
Dosani, N., Bhargava, R., Arya, A., Pang, C., Tut, P., Sharma, A., & Chasen, M. (2020). Perceptions of palliative care in a South Asian community: findings from an observational study. BMC Palliat. Care, 19(1), 141. https://doi.org/10.1186/s12904-020-00646-6
Elk, R., Felder, T. M., Cayir, E., & Samuel, C. A. (2018). Social inequalities in palliative care for cancer patients in the United States: A structured review. Semin. Oncol. Nurs., 34(3), 303–315. https://doi.org/10.1016/j.soncn.2018.06.011
Flores, G., Abreu, M., Barone, C. P., Bachur, R., & Lin, H. (2012). Errors of medical interpretation and their potential clinical consequences: a comparison of professional versus ad hoc versus no interpreters. Ann. Emerg. Med., 60(5), 545–553. https://doi.org/10.1016/j.annemergmed.2012.01.025
Gardiner, T., Abraham, S., Clymer, O., Rao, M., & Gnani, S. (2021). Racial and ethnic health disparities in healthcare settings. BMJ (Clinical Research Ed.), 372, n605. https://doi.org/10.1136/bmj.n605
Generalitat de Catalunya. (2021). Programa de Atención Domiciliaria, Equipos de Soporte PADES [Internet]. https://salutintegralbcn.gencat.cat/ca/ambits/Programa-datencio-domiciliaria-Equips-deSuport-PADES
Gómez-Batiste, X., Amblàs, J., Turrillas, P., Tebé, C., Peñafiel, J., Calsina, A., et al. (2021). Recomendaciones prácticas para la identificación y la aproximación pronóstica de personas con enfermedades crónicas avanzadas y necesidades paliativas en Servicios de salud y 37 sociales. NECPAL pronóstico 4.0. Càtedra de Cures Pal·liatives- Institut Català d’Oncologia-UVIC-UCC.
Grup Mutuam. PADES- Serveis sanitaris. https://www.mutuam.cat/serveis-sanitaris/pades
Hart, J. T. (1971). The inverse care law. Lancet, 1(7696), 405–412. https://doi.org/10.1016/s0140-6736(71)92410-x
Hospital Vall d’Hebron Barcelona. (2013). Vall d’Hebron en xifres. [Internet]. https://w3.vhebron.net/Comunicacio/brochure_catala/files/assets/common/downloads/publi cation.pdf
Instituto Nacional de Estadística. (2021). Indicadores demográficos básicos. https://www.ine.es/dyngs/INEbase/categoria.htm?c=Estadistica_P&cid=1254735573002
Kai, J., Beavan, J., & Faull, C. (2011). Challenges of mediated communication, disclosure and patient autonomy in cross-cultural cancer care. Br. J. Cancer., 105(7), 918–924. https://doi.org/10.1038/bjc.2011.318
Khan, M. Z., Zahid, S., Kichloo, A., Jamal, S., Minhas, A. M. K., Khan, M. U., Ullah, W., Sattar, Y., & Balla, S. (2022). Gender, racial, ethnic, and socioeconomic disparities in palliative care encounters in ischemic stroke admissions. Cardiovasc. Revasc Med.: Including Molecular Interventions, 35, 147–154. https://doi.org/10.1016/j.carrev.2021.04.004
Khosla, N., Washington, K. T., & Regunath, H. (2016). Perspectives of health care providers on US South Asians’ attitudes toward pain management at end of life. The American J. Hosp. Palliat. Med., 33(9), 849–857. https://doi.org/10.1177/1049909115593063
Khosla, N., Washington, K. T., Mukherjea, A., & Aslakson, R. (2019). Health-care providers’ perspectives on decision-making among seriously ill patients of South Asian origin in the United States. J. Palliat. Care, 34(3), 181–188. https://doi.org/10.1177/0825859719829480
Mazanec, P., Verga, S., Foley, H., & Mehta, A. K. (2019). The need for cultural inclusivity in global palliative nursing: Caring for selected underserved populations in the United States: Caring for selected underserved populations in the United States. J Hosp. Palliat. Nur.: JHPN: The Official Journal of the Hospice and Palliative Nurses Association, 21(6), E1–E8. https://doi.org/10.1097/NJH.0000000000000575
Murray, S. A., Kendall, M., Boyd, K., & Sheikh, A. (2005). Illness trajectories and palliative care. BMJ (Clinical Research Ed.), 330(7498), 1007–1011. https://doi.org/10.1136/bmj.330.7498.1007
NCI dictionary of Cancer Terms. (2011, febrero 2). National Cancer Institute. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/end-of-life-care
Nelson, K. E., Wright, R., Fisher, M., Koirala, B., Roberts, B., Sloan, D. H., Wu, D. S., & Davidson, P. M. (2021). A call to action to address disparities in palliative care access: A conceptual framework for individualizing care needs. J. Palliat. Med., 24(2), 177–180. https://doi.org/10.1089/jpm.2020.0435
Puchalski, C., Ferrell, B., Virani, R., Otis-Green, S., Baird, P., Bull, J., Chochinov, H., Handzo, G., Nelson-Becker, H., Prince-Paul, M., Pugliese, K., & Sulmasy, D. (2009). Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference. J. Palliat. Med., 12(10), 885–904. https://doi.org/10.1089/jpm.2009.0142
Radbruch, L., De Lima, L., Knaul, F., Wenk, R., Ali, Z., Bhatnaghar, S., et.al. (2020). Redefining Palliative Care-A new consensus-based definition. J. Pain Symptom Manage, 60(4), 754–764. https://doi.org/10.1016/j.jpainsymman.2020.04.027
Rodríguez, Blanco, M. (2022). Libertad religiosa: derecho mortuorio. Boletín Oficial del Estado (BOE).
Roth, A. R., & Canedo, A. R. (2019). Introduction to hospice and palliative care. Primary Care, 46(3), 287–302. https://doi.org/10.1016/j.pop.2019.04.001
Samanta, J., Samanta, A., & Madhloom, O. (2018). 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, 32(6), 368–377. https://doi.org/10.1111/bioe.12447
Sánchez, P., Amil, I., Bullich, P., Contel, C., Ferrando, C., Belart, R., et al. (2918). Bases per al desenvolupament del model d’atenció al final de la vida a Catalunya. Generalitat de Catalunya. https://canalsalut.gencat.cat/ca/vidasaludable/etapes-de-la-vida/final-vida/cures-palliatives/recursos-professionals/
SECPAL. Guía de Cuidados Paliativos Sociedad Española de Cuidados Paliativos SECPAL. https://secpal.com/biblioteca_guia-cuidadospaliativos_2-definicion-de-enfermedad-terminal#Descarga
Semlali, I., Tamches, E., Singy, P., & Weber, O. (2020). Introducing cross-cultural education in palliative care: focus groups with experts on practical strategies. BMC Palliat. Care, 19(1), 171. https://doi.org/10.1186/s12904-020-00678-y
Shabnam, J., Timm, H., Nielsen, D. S., & Raunkiaer, M. (2020). Palliative care for older South Asian migrants: A systematic review. Palliat. Support. Care, 18(3), 346–358. https://doi.org/10.1017/S1478951519000397
Silva, M. D., Genoff, M., Zaballa, A., Jewell, S., Stabler, S., Gany, F. M., & Diamond, L. C. (2016). 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 Manage, 51(3), 569–580. https://doi.org/10.1016/j.jpainsymman.2015.10.011
Singh, T., & Harding, R. (2015). Palliative care in South Asia: a systematic review of the evidence for care models, interventions, and outcomes. BMC., 8(1), 172. https://doi.org/10.1186/s13104-015-1102-3
Six, S., Bilsen, J., & Deschepper, R. (2020). Dealing with cultural diversity in palliative care. BMJ Supportive & Palliat. Care, bmjspcare-2020-002511. https://doi.org/10.1136/bmjspcare-2020-002511
Stone, P., White, N., Oostendorp, L. J. M., Llewellyn, H., & Vickerstaff, V. (2021). Comparing the performance of the palliative prognostic (PaP) score with clinical predictions of survival: A systematic review. European Journal of Cancer (Oxford, England: 1990), 158, 27–35. https://doi.org/10.1016/j.ejca.2021.08.049
Temel, J. S., Greer, J. A., Muzikansky, A., Gallagher, E. R., Admane, S., Jackson, V.A., Dahlin, C. M., Blinderman, C. D., Jacobsen, J., Pirl, W. F., Billings, J. A., & Lynch,T. J. (2010). Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med., 363(8), 733–742. https://doi.org/10.1056/nejmoa1000678
Thai, V., Ghosh, S., Tarumi, Y., Wolch, G., Fassbender, K., Lau, F., DeKock, I., Mirosseini, M., Quan, H., Yang, J., & Mayo, P. R. (2016). Clinical prediction survival of advanced cancer patients by palliative care: a multi-site study. International J. Palliat. Nurse., 22(8), 380–387. https://doi.org/10.12968/ijpn.2016.22.8.380
Umaretiya, P. J., Wolfe, J., & Bona, K. (2022). Naming the problem: A structural racism framework to examine disparities in palliative care. J. Pain Symptom Managet., 63(5), e461–e463. https://doi.org/10.1016/j.jpainsymman.2021.07.035
UNESCO Catalunya, Sobrevia X, Torradeflot F, Marset J, Camps A, Garcia J, et al. (2013). Atención religiosa al final de la vida. Conocimientos útiles sobre creencias y convicciones.
Weber, O., Semlali, I., Gamondi, C., & Singy, P. (2021). Cultural competency and sensitivity in the curriculum for palliative care professionals: a survey in Switzerland. BMC Medical Education, 21(1), 318. https://doi.org/10.1186/s12909-021-02745-1
Weerasinghe, S., & Maddalena, V. (2016). Negotiation, mediation and communication between cultures: End-of-life care for south Asian immigrants in Canada from the perspective of family caregivers. Soc. Work Public Health, 31(7), 665–677. https://doi.org/10.1080/19371918.2015.1137521
Wilkinson, E., Randhawa, G., Brown, E., Da Silva Gane, M., Stoves, J., Warwick, G., Akhtar, T., Magee, R., Sharman, S., & Farrington, K. (2016). Exploring access to end of life care for ethnic minorities with end stage kidney disease through recruitment in action research. BMC Palliat. Care, 15(1), 57. https://doi.org/10.1186/s12904-016-0128-1
Wilkinson, E., Waqar, M., Gill, B., Hoque, P., Jetha, C., Bola, K. K., Mahmood, R., Mahmood, S., Saujani, R., & Randhawa, G. (2017). Exploring end-of-life care for South Asian kidney patients: interviewer reflections. Int. J. Palliat. Nurs. 23(3), 120–128. https://doi.org/10.12968/ijpn.2017.23.3.120
World Health Organization (2020). World Health Organization, fact sheets: Palliative Care. https://www.who.int/news-room/factsheets/detail/palliative-care
Yarnell, C. J., Fu, L., Bonares, M. J., Nayfeh, A., & Fowler, R. A. (2020). Association between Chinese or South Asian ethnicity and end-of-life care in Ontario, Canada. Journal de l’Association Medicale Canadienne [Canadian Medical Association Journal], 192(11), E266–E274. https://doi.org/10.1503/cmaj.190655