Keywords
palliative care
end of life
patient wishes
How to Cite
Abstract
Objective: To identify and analyze experiences and opinions that cancer patients without a curative option have regarding the health system regarding their palliative care and end-of-life wishes.
Methods: Qualitative study with a critical-constructivist perspective. 23 in-depth interviews were conducted with patients between 28 and 78 years of age with some of the most frequent cancers (breast, cervix, colon, stomach, among others, with a life expectancy between six and twelve months) treated at the Hospital Universitario San José de Popayán, the San Ignacio University Hospital and the National Cancer Institute in Bogotá.
Results: Two categories of experiences and wishes of patients were identified: one about the care and information they want to receive from health staff and another related to the health system, which includes administrative problems with the EPS, the importance of provide continuity in medical care, the opportunity in the delivery of medicines and the allocation of appointments, and the hospital infrastructure directed towards the Institution where they wish to be treated.
Conclusions: The results of this study contribute to the understanding of the experiences that patients with non-curable cancer have had with the health system. It is necessary to educate health personnel on the need to inquire and discuss the wishes of their patients in order to offer pertinent help that optimizes their quality of life. The infrastructure of the palliative and emergency care centers, the scheduling of appointments and the timely delivery of medicines must be improved.
World Health Organization. Globocan 2018 - Colombia [Internet]. 2018 [cited 2018 Sep 28]. Available from: https://gco.iarc.fr/today/data/factsheets/populations/170-colombia-fact-sheets.pdf
Van Lancker A, Velghe A, Van Hecke A, Verbrugghe M, Van Den Noortgate N, Grypdonck M, et al. Prevalence of Symptoms in Older Cancer Patients Receiving Palliative Care: A Systematic Review and Meta-Analysis. J Pain Symptom Manage. 2014 Jan;47(1):90-104.
Hughes RE, Holland LR, Zanino D, Link E, Michael N, Thompson KE. Prevalence and Intensity of Pain and Other Physical and Psychological Symptoms in Adolescents and Young Adults Diagnosed with Cancer on Referral to a Palliative Care Service. J Adolesc Young Adult Oncol. 2015 Jun;4(2):70-5.
Rojas-Solano J, Salas-Herrera I. Prevalencia y factores predictivos del dolor por cáncer. Acta Med Costarric. 2002;44(4):144-148
Brown ML, Lipscomb J, Snyder C. The Burden of Illness of Cancer: Economic Cost and Quality of Life. Annu Rev Public Health. 2001 May;22(1):91-113.
Saunders C. The evolution of palliative care. J R Soc Med. 2001 Sep];94(9):430-2.
Barnato AE, Anthony DL, Skinner J, Gallagher PM, Fisher ES. Racial and Ethnic Differences in Preferences for End-of-Life Treatment. J Gen Intern Med. 2009 Jun 23;24(6):695-701.
MINSALUD. Lineamientos para la atención integran en cuidados paliativos [Internet]. Gobierno de Cololmbia. 2020. p. 1–52. Available from: www.minsalud.gov.co/sites/rid/Lists/BibliotecaDigital/RIDE/VS/PP/ENT/lineamnts-cuids-paliatvs-gral-pediatrc.pdf
Green J, Thorogood N. Qualitative methods for health research. 4th ed. London: SAGE Publications; 2018. 41–50 p.
David J, Heredia P. Critical Realism: An Alternative in Social Analysis Realismo crítico: uma alternativa na análise social.
Windows. Nvivo 11 (N. de versión 11.4.1.1064). QRS International. 2017.
Brom L, Pasman HRW, Widdershoven GAM, Van Der Vorst MJ, Reijneveld J, Onwuteaka-Philipsen BD. Patient preferences in treatment decision-making at the end of life: A qualitative study. Psychooncology. 2013;22:7.
Lin H-R. Searching for meaning: narratives and analysis of US-resident Chinese immigrants with metastatic cancer. Cancer Nurs. 2008;31(3):250-8.
Berry LL, Danaher TS, Chapman RA, Awdish RLA. Role of Kindness in Cancer Care. https://doi.org/101200/JOP2017026195. 2017 Oct 16;13(11):744-50.
Chua GP, Tan HK. A qualitative approach in determining the patient-centered information and supportive care needs of cancer patients in Singapore. BMJ Open. 2020 Feb;10(2):e34178.
Luna-Meza A, Godoy-Casasbuenas N, Calvache J, Diaz E, Gempeler F, Morales O, et al. Decision making in the end-of-life care of patients who are terminally ill with cancer – a qualitative descriptive study with a phenomenological approach from the experience of healthcare workers. 2021 Mar; Available from: https://europepmc.org/article/ppr/ppr291668
Calvache JA, Moreno S, Prue G, Reid J, Ahmedzai SH, Arango-Gutierrez A, et al. Knowledge of end-of-life wishes by physicians and family caregivers in cancer patients. BMC Palliat Care 2021. 2021 Sep;20(1):1-7. Available from: https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-021-00823-1
Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA. In search of a good death: observations of patients, families, and providers. Ann Intern Med. 2000 May;132(10):825-32.
Brant JM, Silbermann M. Global Perspectives on Palliative Care for Cancer Patients: Not All Countries Are the Same. Curr Oncol Reports 2021 235. 2021 Apr;23(5):1-10.
Barrera de acceso [Internet]. [cited 2021 Oct 18]. Available from: https://www.oicacancer.org/index.php/publicaciones/barrera-de-acceso
Sánchez-Cárdenas M, León MX, Rodriguez-Campos LF, Parra SL, Gama AC, Córdoba MA. Estado actual de los cuidados paliativos en Colombia - Reporte Técnico. 4th ed. Cárdenas MS, editor. Bogotá. Colombia; 2021. p. 1-125.
Resolución 229 de 2020 [Internet]. Ministerio de Salud y Protección Social. 2020. p. 1–19. Available from: https://www.minsalud.gov.co/Normatividad_Nuevo/Resolución No. 229 de 2020.pdf
Soto Pérez de Celis E, Chavarri-Guerra Y, Pastrana T, Ruiz-Mendoza R, Bukowski A, Goss PE. End-of-life care in Latin America. Vol. 3, Journal of Global Oncology. American Society of Clinical Oncology; 2017. p. 261-70.
Calvache JA, Gil F, de Vries E, Calvache JA, Gil F, de Vries E. ¿Cuántas personas requieren cuidados paliativos para enfermedades oncológicas y no oncológicas en un país de ingresos medios? Análisis de datos de mortalidad. Colomb J Anestesiol. 2020 Sep ;48(4) e924.
NCDs | Global atlas of palliative care at the end of life. WHO [Internet]. 2015 [cited 2021 Mar 9]; Available from: http://www.who.int/ncds/management/palliative-care/palliative-care-atlas/en/
Murcia E, Aguilera J, Wiesner C, Pardo C. Ene-Mar) C. Oncology services in Colombia. Colomb Med. 2018;49(1):89-96.
Congreso de la Republica de Colombia. Ley 1733 - Consuelo Devis Saavedra. 2014;1-5.
Ley Sandra Ceballos, por la cual se establecen las acciones para la atención integral del cáncer en Colombia. Congreso de Colombia. 2010. p. 1-11.
Saunders B, Sim J, Kingstone T, Baker S, Waterfield J, Bartlam B, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant. 2018 Jul;52(4):1893-907.
Communicating with patients with advanced and metastatic cancer | Cancer World Archive [Internet]. Available from: https://archive.cancerworld.net/e-grandround/communicating-with-patients-with-advanced-and-metastatic-cancer/
Chiesi F, Bonacchi A, Primi C, Miccinesi G. Assessing unmet needs in patients with cancer: An investigation of differential item functioning of the Needs Evaluation Questionnaire across gender, age and phase of the disease. PLoS One. 2017 Jul;12(7).
Leppert W, Majkowicz M, Ahmedzai SH. The adaptation of the Sheffield Profile for Assessment and Referral for Care (SPARC) to the Polish clinical setting for needs assessment of advanced cancer patients. J Pain Symptom Manage. 2012 Dec;44(6):916-22.
This work is licensed under a Creative Commons Attribution 4.0 International License.
Copyright (c) 2022 Esther De Vries, Mauricio Medina-Rico, Socorro Moreno