Consentimiento informado en la atención de pacientes en cuidados paliativos. Una revisión sistemática.

María Gabriela Hurtado Enríquez; Diego Alexander Mendoza Panta; Lidys Padrón Fernández

doi:10.37431/conectividad.v5i4.179

Authors

María Gabriela Hurtado Enríquez Universidad Iberoamericana del Ecuador https://orcid.org/0000-0002-0140-4504
Diego Alexander Mendoza Panta Universidad Iberoamericana del Ecuador https://orcid.org/0000-0002-5034-0009
Lidys Padrón Fernández Universidad Iberoamericana del Ecuador https://orcid.org/0000-0002-3432-8210

DOI:

https://doi.org/10.37431/conectividad.v5i4.179

Keywords:

Informed consent, Palliative care, Barriers, Limitations

Abstract

Introduction: Informed consent (IC) is a fundamental ethical principle in the doctor-patient relationship and becomes crucial in the context of palliative care (PC), where decision-making can be complex and delicate, directly impacting quality. of life and well-being of patients and their families. Objective: Identify the barriers perceived by health professionals that limit the effective implementation of IC for patients in CP. Method: a systematic review was carried out in the databases: LILACS, ScienceDirect, Pubmed and The Lancet, using MeSh descriptors, studies focused on the barriers to applying IC in palliative patients were included; using an inductive thematic approach. Results: The search yielded 229 articles, of which 20 were included. Various barriers were identified, which were structured into four categories: (1) social and economic, (2) language or cultural, (3) doctor-patient relationship, and (4) clinics. Conclusions: There are multiple barriers and challenges in the implementation of CI. They include lack of awareness and literacy on the topic, complexity of technical language, resistance from patients and families, lack of time and resources, and lack of adequate training of health personnel.

References

Alcântara, F. A. (2020). Dilemas éticos en cuidados paliativos: revisión de la literatura. Revista Bioetica, 28(4), 704–709. https://doi.org/10.1590/1983-80422020284434

Australian Healthcare Associates. (2019). Exploratory Analysis of Barriers to Palliative Care. www.ahaconsulting.com.au

Buedo, P., Sanchez, L., Ojeda, M. P., della Vedova, M. N., Labra, B., Sipitria, R., Aracil, L. C., Consentino, S., Varela, I., Varas, C. Y., Apaza, G., Krasnow, A., Vilchez, S., & Luna, F. (2023). Consentimiento informado y directivas anticipadas: análisis comparado de la legislación en América Latina. Revista de Bioetica y Derecho, 58, 25–44. https://doi.org/10.1344/rbd2023.58.41678

Camargo, A., Olmos, J., Higuera-Dagovett, E., Vargas, R., & Barreto, R. (2019). Papel de los profesionales de la salud en el diseño, obtención y entendimiento del consentimiento informado: Una revisión. In Revista U.D.C.A Actualidad and Divulgacion Cientifica (Vol. 22, Issue 2). Universidad de Ciencias Aplicadas y Ambientales U.D.C.A. https://doi.org/10.31910/rudca.v22.n2.2019.1164

Carpenter, J. G., Ulrich, C., Hodgson, N., Hanson, L. C., & Ersek, M. (2021). Alternative Consent Models in Pragmatic Palliative Care Clinical Trials. In Journal of Pain and Symptom Management (Vol. 62, Issue 1, pp. 183–191). Elsevier Inc. https://doi.org/10.1016/j.jpainsymman.2020.09.044

Cheein, C. A. (2023). Cuestiones bioéticas involucradas en los Cuidados Paliativos: desde la perspectiva de los profesionales de la salud. Archivos de Medicina Familiar y General, 20(2).

Chen, I.-H., Kuo, S.-F., Lin, Y.-K., & Huang, T.-W. (2022). Knowledge of and Barriers to Palliative Care Perceived by Healthcare Providers before and after Promotion of the Patient Autonomy Act: A Cross-Sectional Study. International Journal of Environmental Research and Public Health, 19(3884), 1–13. https://doi.org/10.3390/ijerph19073884

Coym, A., Oechsle, K., Kanitz, A., Puls, N., Blum, D., Bokemeyer, C., & Ullrich, A. (2020). Impact, challenges and limits of inpatient palliative care consultations - perspectives of requesting and conducting physicians. BMC Health Services Research, 20(1). https://doi.org/10.1186/s12913-020-4936-x

Vries, S., Verhoef, M. J., Vervoort, S. C. J. M., van der Linden, Y. M., Teunissen, S. C. C. M., & de Graaf, E. (2023). Barriers and facilitators that hospital clinicians perceive to discuss the personal values, wishes, and needs of patients in palliative care: a mixed-methods systematic review. In Palliative Care and Social Practice (Vol. 17, pp. 1–22). SAGE Publications Ltd. https://doi.org/10.1177/26323524231212510

Dubón-Peniche, M. C., & Ochoa-Carrillo, F. J. (2013). Trascendencia del consentimiento bajo información en Oncología. Gaceta Mexicana de Oncología, 12(2), 71–72. www.elsevier.es

Evans, C. J., Yorganci, E., Lewis, P., Koffman, J., Stone, K., Tunnard, I., Wee, B., Bernal, W., Hotopf, M., Higginson, I. J., Tanner, D., Henry, C., Grande, G., Dewar, S., Owen, G., Burman, R., Adamis, D., Dunn, M., Kim, S., … Vohora, R. (2020). Processes of consent in research for adults with impaired mental capacity nearing the end of life: Systematic review and transparent expert consultation (MORECare_Capacity statement). BMC Medicine, 18(1). https://doi.org/10.1186/s12916-020-01654-2

García Camino, B., Hall, R. T., & Miranda, E. (2021). La ética del cuidado paliativo (Vol. 1). http://conbioetica-mexico.salud.gob.mx

Guirro, Ú. B. do P., Perini, C. C., Fileno, L. O. Z., Fioravanti, G. B., & Siqueira, J. E. de. (2023). Competencias en cuidados paliativos entre los estudiantes de medicina. Revista Bioética, 31. https://doi.org/10.1590/1983-803420233363es

Hall, A., Rowland, C., & Grande, G. (2019). How Should End-of-Life Advance Care Planning Discussions Be Implemented According to Patients and Informal Carers? A Qualitative Review of Reviews. In Journal of Pain and Symptom Management (Vol. 58, Issue 2, pp. 311–335). Elsevier Inc. https://doi.org/10.1016/j.jpainsymman.2019.04.013

Kaasalainen, S., Sussman, T., Professor, A., McCleary, L., Thompson, G., Hunter, P. V, Psych, R., Professor St Thomas, A., Wickson-Griffiths, A., Professor, A., Dal Bello-Haas, V., Venturato, L., Papaioannou, A., You, J., Associate Professor, F., & Parker, D. (n.d.). Palliative Care Models in Long-Term Care: A Scoping Review.

Keij, S. M., Lie, H. C., Laidsaar-Powell, R., Kunneman, M., de Boer, J. E., Moaddine, S., Stiggelbout, A. M., & Pieterse, A. H. (2023). Patient-related characteristics considered to affect patient involvement in shared decision making about treatment: A scoping review of the qualitative literature. In Patient Education and Counseling (Vol. 111). Elsevier Ireland Ltd. https://doi.org/10.1016/j.pec.2023.107677

Lima, M. A., & Manchola-Castillo, C. (2021). Bioética, cuidados paliativos y liberación: una contribución al “buen morir.” Revista Bioetica, 29(2), 268–278. https://doi.org/10.1590/1983-80422021292464

Macchi, M. J., Pérez, M. del V., & Alonso, J. P. (2020). Planificación de los cuidados en el final de la vida. Perspectivas de profesionales de oncología y cuidados paliativos. Sexualidad, Salud y Sociedad (Rio de Janeiro), 35, 218–236. https://doi.org/10.1590/1984-6487.sess.2020.35.11.a

Ministerio de Salud Pública. (2014). Cuidados Paliativos Guía de Práctica Clínica (GPC). www.salud.gob.ec

Montanari Vergallo, G., & Spagnolo, A. G. (2019). Informed Consent and Advance Care Directives: Cornerstones and Outstanding Issues in the Newly Enacted Italian Legislation. Linacre Quarterly, 86(2–3), 188–197. https://doi.org/10.1177/0024363919837863

Noordman, J., Van Vliet, L., Kaunang, M., Van Den Muijsenbergh, M., Boland, G., & Van Dulmen, S. (2019). Towards appropriate information provision for and decision-making with patients with limited health literacy in hospital-based palliative care in Western countries: A scoping review into available communication strategies and tools for healthcare providers. In BMC Palliative Care (Vol. 18, Issue 1). BioMed Central Ltd. https://doi.org/10.1186/s12904-019-0421-x

Nunes, F. D. B. R. S., & Almeida, A. das D. L. de. (2018). Informação médica e consentimento de pessoas com câncer. Revista Bioética, 26(1), 119–126. https://doi.org/10.1590/1983-80422018261233

Pérez, C. G., Garcia, A. B. S., & Capilla, D. J. G. (2023). Perspectiva bioética de la adecuación del esfuerzo terapéutico en pacientes adultos terminales. Revisión sistemática. Enfermeria Global, 22(3), 586–603. https://doi.org/10.6018/eglobal.554661

Rivas Flores, J., Vilches Aguirre, Y., Muñoz Sánchez, D., Attisent Trota, R., Gisbet Aguilar, A. L. V. P., Novellas Aguirre de Cárcer, A., Núñez Olarte, J. M., Rodeles del Pozo, real, Sanz Ortíz, jaime, & Porta i Sales, J. (2006). Consentimiento Informado en cuidados paliativos. Cuadernos de Bioética, XVII(1), 95–115.

Rojas García, C., Rincón Ascencio, E. E., Sánchez rúa, M., Giraldo Castro, M., Bosa Ruiz, M. L., Quintero Trejos, M. J., Sequea Torregrosa, L., Martínez Martínez; María José, & Sánchez Bolívar, L. B. (2022). Manual Básico de Enfermería Paliativa (Sánchez-Cardenas Miguel Antonio & C. Rojas García, Eds.; 1st ed.). Universidad el Bosque. www.unbosque.edu.com

Weber Sánchez, A. (2016). Consentimiento informado en Oncología. Reflexiones sobre su aspecto ético. In Gaceta Mexicana de Oncologia (Vol. 15, Issue 5, pp. 285–291). Masson-Doyma Mexico, S.A. https://doi.org/10.1016/j.gamo.2016.08.003