Advance care planning in people with advanced cancer: a phenomenological study
DOI:
https://doi.org/10.15649/cuidarte.4455Keywords:
Advance Care Planning, Advance Directives, Palliative Care, Qualitative ResearchAbstract
Highlights
- This study reveals that patients in palliative care experience significant barriers to advance care planning, such as a lack of understanding of the palliative care process.
- One of the key findings is patients' tendency to delegate end-of-life decisions to family members, healthcare professionals, or a supreme being.
- Silence and avoidance of conversations about death are common among patients, as they seek to avoid suffering for themselves and their loved ones.
- The study suggests that it is crucial to improve the integration of advanced care planning from the earliest stages of treatment, promoting open communication.
Introduction: Significant challenges currently exist in addressing patients' preferences regarding end-of-life care, particularly in the context of advance care planning. Objective: To understand advance care planning at the end of life in people with cancer in palliative care in Medellin Colombia. Materials and Methods: This study used a hermeneutic phenomenological approach to explore the lived experiences of nine patients with advanced cancer. In-depth interviews were conducted, focusing on patients' understanding of advanced care planning. Data was analyzed using thematic analysis to identify major themes related to advance care planning. Results: Six key themes emerged from the data: (1) Clinging to life; (2) Decision delegation and reflective avoidance; (3) Silence to avoid suffering; (4) Resignation; (5) A quiet place; and (6) My legacy. These results describe the experiences of cancer patients in palliative care versus advanced care planning. Discussion: The findings highlight the complexity of advanced care planning in advanced cancer patients in palliative care. Conclusions: This study revealed barriers to care planning, including a lack of understanding of the palliative care process, communication difficulties, and cultural factors.
How to cite this article: Arias-Rojas Mauricio, Carreño-Moreno Sonia, Arredondo Holguín Edith. Advance care planning in people with advanced cancer: a phenomenological study. Revista Cuidarte. 2025;16(3):e4455. https://doi.org/10.15649/cuidarte.4455
References
World Health Organization. Global health estimates: Leading causes of death [Internet] 2024 [cited 2021 Jun 26]. Available from: https://www.who.int/data/gho/data/themes/mortality-and-global-health-estimates/ghe-leading-causes-of-death
Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin. 2018;68(6):394–424. https://doi.org/10.3322/caac.21492
Sung H, Ferlay J, Siegel RL, Laversanne M, Soerjomataram I, Jemal A, et al. Global Cancer Statistics 2020: GLOBOCAN Estimates of Incidence and Mortality Worldwide for 36 Cancers in 185 Countries. CA Cancer J Clin. 2021;71(3):209–49. https://doi.org/10.3322/caac.21660
World Health Organization. The Worldwide Hospice Palliative Care Alliance. Global atlas of palliative care at the end of life. World Health Organization and The Worldwide Hospice Palliative Care Alliance [Internet]. 2014 [cited 2021 Jul 2]; Available from: https://www.paho.org/en/node/75063
Franks PJ, Salisbury C, Bosanquet N, Wilkinson EK, Kite S, Naysmith A, et al. The level of need for palliative care: a systematic review of the literature. Palliat Med. 2000;14(2):93–104. https://doi.org/10.1191/026921600669997774
Buss MK, Rock LK, McCarthy EP. Understanding Palliative Care and Hospice: A Review for Primary Care Providers. Mayo Clin Proc. 2017;92(2):280–6. https://doi.org/10.1016/j.mayocp.2016.11.007
Centeno C, Sitte T, de Lima L, Alsirafy S, Bruera E, Callaway M, et al. Documento de Posición Oficial sobre la Promoción Global de Cuidados Paliativos: Recomendaciones del Grupo Internacional Asesor PAL-LIFE de la Academia Pontificia de la Vida, Ciudad del Vaticano. J Palliat Med. 2018;21(10):1398-1407. https://doi.org/10.1089/jpm.2018.0387
Brighton LJ, Bristowe K. Communication in palliative care: talking about the end of life, before the end of life. Postgrad Med J. 2016;92(1090):466–70. https://doi.org/10.1136/postgradmedj-2015-133368
Agarwal R, Epstien AS. Advance Care Planning and End-of-Life Decision Making for Patients with Cancer. Semin Oncol Nurs. 2018;34(3):316–26. https://doi.org/10.1016/j.soncn.2018.06.012
Soto-Perez-de-Celis E, Chavarri-Guerra Y, Pastrana T, Ruiz-Mendoza R, Bukowski A, Goss PE. End-of-Life Care in Latin America. J Glob Oncol. 2017;3(3):261. https://doi.org/10.1200/JGO.2016.005579
Fuster DE. Investigación cualitativa: Método fenomenológico hermenéutico. Propósitos y Representaciones. 2019;7(1):201–229. http://dx.doi.org/10.20511/pyr2019.v7n1.267
Van Manen M, Van Manen M. Doing Phenomenological Research and Writing. Qual Health Res. 2021;31(6):1069-1082. https://doi.org/10.1177/10497323211003058
Rabanaque L. Actitud natural y actitud fenomenológica. Sapientia. 2011;67:229-230. https://repositorio.uca.edu.ar/bitstream/123456789/4637/1/actitud-natural-actitud-fenomenologica-rabanaque.pdf
Guerrero-Castañeda RF, Menezes TM, Ojeda-Vargas MG. Características de la entrevista fenomenológica en investigación en enfermería. Rev Gaúcha Enferm. 2017;38(2):e67458. https://doi.org/10.1590/1983-1447.2017.02.67458
Zhou J, Xu S, Cao Z, Tang J, Fang X, Qin L, et al. Validation of the Palliative Prognostic Index, Performance Status–Based Palliative Prognostic Index and Chinese Prognostic Scale in a home palliative care setting for patients with advanced cancer in China. BMC Palliat Care. 2020;19(1):167. https://doi.org/10.1186/s12904-020-00676-0
Moser A, Korstjens I. Series: Practical guidance to qualitative research. Part 3: Sampling, data collection and analysis. Eur J Gen Pract. 2018;24(1):9-18. https://doi.org/10.1080/13814788.2017.1375091
Morse JM. Determining Sample Size. Qualitative Health Research. 2000;10(1):3-5. https://doi.org/10.1177/104973200129118183
De Witt L, Ploeg J. Critical appraisal of rigour in interpretive phenomenological nursing research. J Adv Nurs. 2006;55(2):215–29. https://doi.org/10.1111/j.1365-2648.2006.03898.x
Arias-Rojas M. Planificación avanzada de la atención en personas con cáncer en cuidados paliativos. 2024. Mendeley Data, V1. https://doi.org/10.17632/895dddn2c6.1
Vázquez ML, Vargas I, Rubio-Valera M, Aznar-Lou I, Eguiguren P, Mogollón-Pérez AS, et al. Improving equity in access to early diagnosis of cancer in different healthcare systems of Latin America: protocol for the EquityCancer-LA implementation-effectiveness hybrid study. BMJ Open. 2022;12(12). https://doi.org/10.1136/bmjopen-2022-067439
Bickel KE, Levy C, MacPhee ER, Brenner K, Temel JS, Arch JJ, et al. An Integrative Framework of Appraisal and Adaptation in Serious Medical Illness. J Pain Symptom Manage. 2020;60(3):657-677.e6. https://doi.org/10.1016%2Fj.jpainsymman.2020.05.018
Puerto G, Chiriboga G, DeSanto-Madeya S, Duodu V, Cruz-Oliver DM, Tjia J. Advance Care Planning for Spanish-language Speakers: Patient, Family and Interpreter Perspectives. J Appl Gerontol. 2023;42(8):1840-1849. https://doi.org/10.1177/07334648231156864
Pastrana T, De Lima L, Stoltenberg M, Peters H. Palliative Medicine Specialization in Latin America: A Comparative Analysis. J Pain Symptom Manage. 2021;62(5):960–967. https://doi.org/10.1016/j.jpainsymman.2021.04.014
Dittborn M, Turrillas P, Maddocks M, Leniz J. Attitudes and preferences towards palliative and end of life care in patients with advanced illness and their family caregivers in Latin America: A mixed studies systematic review. Palliat Med. 2021;35(8):1434–1451. https://doi.org/10.1177/02692163211029514
Pastrana T, De Lima L. Palliative Care in Latin America: Are We Making Any Progress? Assessing Development Over Time Using Macro Indicators. J Pain Symptom Manage. 2022;63(1):33–41. https://doi.org/10.1016/j.jpainsymman.2021.07.020
Pergolizzi J, LeQuang JAK, Wagner M, Varrassi G. Challenges in Palliative Care in Latin America: A Narrative Review. Cureus. 2024;16(5):e60698. https://doi.org/10.7759%2Fcureus.60698
Congreso de la República de Colombia. Ley 1733 de 2014 de 8 de septiembre. Mediante la cual se regulan los servicios de cuidados paliativos. Publicada en el Diario Oficial 49268 Septiembre 8 de 2014. Consulta: Septiembre 28, 2024. Disponible en: https://www.funcionpublica.gov.co/eva/gestornormativo/norma.php?i=59379#:~:text=Ley%20Consuelo%20Devis%20Saavedra%2C%20mediante,en%20la%20calidad%20de%20vida.
Álvarez Acuña AM, Gomezese Ribero OF. Documento Voluntades Anticipadas: conocimientos y experiencias de los profesionales de la salud en Colombia. Rev. colomb. anestesiol. 2022;50(2):e203. https://doi.org/10.5554/22562087.e1012
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