Cuidados paliativos en pacientes con enfermedad crónica no oncológica avanzada en el primer nivel de atención
Palabras clave:
cuidados paliativos, atención primaria, equipo multidisciplinario, estrategias, enfermedades crónicasResumen
La investigación destaca la importancia de mejorar el acceso a los cuidados paliativos para pacientes con enfermedades pulmonares crónicas, considerándolos como un derecho humano universal. Se enfoca en la implementación de políticas de salud, formación de personal capacitado y estrategias de mejora que enfaticen la integración temprana, la formación de profesionales y la adaptación cultural y geográfica. A través de una revisión utilizando la declaración PRISMA, se encontraron 43 artículos relevantes que subrayaron la necesidad de proporcionar cuidados paliativos mediante un enfoque holístico y multidisciplinario para garantizar una atención de calidad tanto a los pacientes como a sus familiares. Se mencionaron diversas estrategias para mejorar estos cuidados, como la capacitación del personal médico, la telemedicina, la implementación de equipos multidisciplinarios y la mejora de la comunicación. Además, se resalta la importancia de la colaboración entre diferentes profesionales de la salud para abordar las complejas necesidades de los pacientes y sus familias, no solo a nivel físico, sino también emocional y psicológico.
Referencias
Abdullah, M. B., Huriah, T., Arianti, A., & Sarkasi, R. B. (2021). Nurse’s Roles in Patient-Family Decision Making for Palliative Patients in Indonesia and Malaysia. Open Access Macedonian Journal of Medical Sciences (OAMJMS), 9(T4), 6-17. https://doi.org/10.3889/OAMJMS.2021.5594
Aparicio, M., Centeno, C., Carrasco, J. M., Barbosa, A., & Arantzamendi, M. (2017). What are families most grateful for after receiving palliative care? Content analysis of written documents received: a chance to improve the quality of care. BMC palliative care, 16(1), 47. https://doi.org/10.1186/S12904-017-0229-5
Avati, A., Jung, K., Harman, S., Downing, L., Ng, A., & Shah, N. H. (2018). Improving palliative care with deep learning. BMC medical informatics and decision-making, 18 (Suppl 4), 122. https://doi.org/10.1186/S12911-018-0677-8
Bajwah, S., Ross, J. R., Wells, A. U., Mohammed, K., Oyebode, C., Birring, S. S., Patel, A. S., Koffman, J., Higginson, I. J., & Riley, J. (2015). Palliative care for patients with advanced fibrotic lung disease: a randomised controlled phase II and feasibility trial of a community case conference intervention. Thorax, 70(9), 830-839. https://doi.org/10.1136/THORAXJNL-2014-206583
Bakitas, M. A., Dionne-Odom, J. N., Ejem, D. B., Wells, R., Azuero, A., Stockdill, M. L., Keebler, K., Sockwell, E., Tims, S., Engler, S., Steinhauser, K., Kvale, E., Durant, R. W., Tucker, R. O., Burgio, K. L., Tallaj, J., Swetz, K. M., & Pamboukian, S. V. (2020). Effect of an Early Palliative Care Telehealth Intervention vs Usual Care on Patients With Heart Failure. JAMA Internal Medicine, 180(9), 1203. https://doi.org/10.1001/jamainternmed.2020.2861
Bakitas, M., Dionne-Odom, J. N., Pamboukian, S. V., Tallaj, J., Kvale, E., Swetz, K. M., Frost, J., Wells, R., Azuero, A., Keebler, K., Akyar, I., Ejem, D., Steinhauser, K., Smith, T., Durant, R., & Kono, A. T. (2017). Engaging patients and families to create a feasible clinical trial integrating palliative and heart failure care: results of the ENABLE CHF-PC pilot clinical trial. BMC palliative care, 16(1). https://doi.org/10.1186/S12904-017-0226-8
Bauer, E. H., Bollig, G., & Dieperink, K. B. (2020). District nurses’ views on and experiences with a telemedicine educational programme in palliative care. Scandinavian journal of caring sciences, 34(4), 1083-1093. https://doi.org/10.1111/SCS.12818
Boddaert, M. S., Stoppelenburg, A., Hasselaar, J., van der Linden, Y. M., Vissers, K. C. P., Raijmakers, N. J. H., & Brom, L. (2021). Specialist palliative care teams and characteristics related to referral rate: a national cross-sectional survey among hospitals in the Netherlands. BMC palliative care, 20(1). https://doi.org/10.1186/S12904-021-00875-3
Brian, J., Kerr, K. M., McClish, D. K., Skoro, N., Johnson, S., Wanke, C., & Hoefer, D. (2016). Effect of a Home‐Based Palliative Care Program on Healthcare Use and Costs. Journal of the American Geriatrics Society, 64(11), 2288-2295. https://doi.org/10.1111/jgs.14354
Brown, C. E., Engelberg, R. A., Nielsen, E. L., & Curtis, J. R. (2016). Palliative care for patients dying in the intensive care unit with chronic lung disease compared with metastatic cancer. Annals of the American Thoracic Society, 13(5), 684-689. https://doi.org/10.1513/ANNALSATS.201510-667OC/SUPPL_FILE/DISCLOSURES.PDF
Chapman, E. J., Pini, S., Edwards, Z., Elmokhallalati, Y., Murtagh, F. E. M., & Bennett, M. I. (2022). Conceptualising effective symptom management in palliative care: a novel model derived from qualitative data. BMC palliative care, 21(1). https://doi.org/10.1186/S12904-022-00904-9
Chen, J. C.-Y., Thorsteinsdottir, B., Vaughan, L. E., Feely, M. A., Albright, R. C., Onuigbo, M., Norby, S. M., Gossett, C. L., D’Uscio, M. M., Williams, A. W., Dillon, J. J., & Hickson, L. J. (2018). End of Life, Withdrawal, and Palliative Care Utilization among Patients Receiving Maintenance Hemodialysis Therapy. Clinical Journal of the American Society of Nephrology, 13(8), 1172-1179. https://doi.org/10.2215/CJN.00590118
Cruz, I. O., Rocha, C., & Oliveira, H. M. (2022). Palliative care in heart failure. Revista Portuguesa de Cardiologia, 41(5), 409-413. https://doi.org/10.1016/j.repc.2021.03.017
Dávalos, V., Mahtani-Chugani, V., López-Núñez, C., Duque, V., Leon-Larios, F., Lomas-Campos, M. D. L. M., & Sanz, E. (2020). Knowledge, Attitudes and Expectations of Physicians with Respect to Palliative Care in Ecuador: A Qualitative Study. International journal of environmental research and public health, 17(11). https://doi.org/10.3390/IJERPH17113906
Davila, C., Cartagena, L., Byrne-Martelli, S., Bapat, A., & Stoltenberg, M. (2023). Creating a Dedicated Palliative Care Team for ICU Spanish Speaking Patients in Response to COVID-19. Journal of Pain and Symptom Management, 65(4), e315-e320. https://doi.org/10.1016/j.jpainsymman.2022.12.013
Duenk, R. G., Verhagen, C., Dekhuijzen, P. N. R., Vissers, K. C. P., Engels, Y., & Heijdra, Y. (2017). The view of pulmonologists on palliative care for patients with COPD: a survey study. International journal of chronic obstructive pulmonary disease, 12, 299-311. https://doi.org/10.2147/COPD.S121294
Dy, S. M., Al Hamayel, N. A., Hannum, S. M., Sharma, R., Isenberg, S. R., Kuchinad, K., Zhu, J., Smith, K., Lorenz, K. A., Kamal, A. H., Walling, A. M., & Weaver, S. J. (2017). A Survey to Evaluate Facilitators and Barriers to Quality Measurement and Improvement: Adapting Tools for Implementation Research in Palliative Care Programs. Journal of pain and symptom management, 54(6), 806-814. https://doi.org/10.1016/J.JPAINSYMMAN.2017.06.008
Dy, S. M., Sharma, R., Kuchinad, K., Liew, Z.-R., Abu Al Hamayel, N., Hannum, S. M., Zhu, J., Kamal, A. H., Walling, A. M., Lorenz, K. A., & Isenberg, S. R. (2018). Evaluation of the Measuring and Improving Quality in Palliative Care Survey. Journal of oncology practice, 14(12), e834-e843. https://doi.org/10.1200/JOP.18.00405
Gainza, D., Sanz-Peces, E. M., Alonso-Babarro, A., Varela-Cerdeira, M., Prados-Sánchez, C., Vega-Aleman, G., Rodriguez-Barrientos, R., & Polentinos-Castro, E. (2019). Breaking Barriers: Prospective Study of a Cohort of Advanced Chronic Obstructive Pulmonary Disease Patients To Describe Their Survival and End-of-Life Palliative Care Requirements. Journal of Palliative Medicine, 22(3), 290-296. https://doi.org/10.1089/jpm.2018.0363
Grubbs, V., O’Riordan, D., & Pantilat, S. (2017). Characteristics and Outcomes of In-Hospital Palliative Care Consultation among Patients with Renal Disease Versus Other Serious Illnesses. Clinical Journal of the American Society of Nephrology, 12(7), 1085-1089. https://doi.org/10.2215/CJN.12231116
Hanson, L. C., Kistler, C. E., Lavin, K., Gabriel, S. L., Ernecoff, N. C., Lin, F.-C., Sachs, G. A., & Mitchell, S. L. (2019). Triggered Palliative Care for Late-Stage Dementia: A Pilot Randomized Trial. Journal of Pain and Symptom Management, 57(1), 10-19. https://doi.org/10.1016/j.jpainsymman.2018.10.494
Hickman, S. E., Parks, M., Unroe, K. T., Ott, M., & Ersek, M. (2020). The Role of the Palliative Care Registered Nurse in the Nursing Facility Setting. Journal of Hospice & Palliative Nursing, 22(2), 152-158. https://doi.org/10.1097/NJH.0000000000000634
Hidalgo, P., Mascialino, G., Miño, D., Mendoza, M., & Marcillo, A. B. (2021). Knowledge of Palliative Care in Ecuador. International journal of environmental research and public health, 18(9). https://doi.org/10.3390/IJERPH18094840
Hua, M., Fonseca, L. D., Morrison, R. S., Wunsch, H., Fullilove, R., & White, D. B. (2021). What Affects Adoption of Specialty Palliative Care in Intensive Care Units: A Qualitative Study. Journal of pain and symptom management, 62(6), 1273-1282. https://doi.org/10.1016/J.JPAINSYMMAN.2021.06.015
Hussain, J., Allgar, V., & Oliver, D. (2018). Palliative care triggers in progressive neurodegenerative conditions: An evaluation using a multi-centre retrospective case record review and principal component analysis. Palliative medicine, 32(4), 716-725. https://doi.org/10.1177/0269216318755884
Johansen, H., & Helgesen, A. K. (2021). Palliative care in the community – the role of the resource nurse, a qualitative study. BMC Palliative Care, 20(1). https://doi.org/10.1186/S12904-021-00860-W
Joren, C. Y., Kars, M. C., Kremer, L. C. M., Rippen, H., Verhagen, A. A. E., & Aris-Meijer, J. L. (2023). Improvement and implementation of a national individual care plan in paediatric palliative care: a study protocol. BMJ Paediatrics Open, 7(1), e001677. https://doi.org/10.1136/bmjpo-2022-001677
Kaufman, B. G., Granger, B. B., Sun, J.-L., Sanders, G., Taylor, D. H., Mark, D. B., Warraich, H., Fiuzat, M., Steinhauser, K., Tulsky, J. A., Rogers, J. G., O’Connor, C., & Mentz, R. J. (2021). The Cost-Effectiveness of Palliative Care: Insights from the PAL-HF Trial. Journal of Cardiac Failure, 27(6), 662-669. https://doi.org/10.1016/j.cardfail.2021.02.019
Kluger, B. M., Miyasaki, J., Katz, M., Galifianakis, N., Hall, K., Pantilat, S., Khan, R., Friedman, C., Cernik, W., Goto, Y., Long, J., Fairclough, D., Sillau, S., & Kutner, J. S. (2020). Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders. JAMA Neurology, 77(5), 551. https://doi.org/10.1001/jamaneurol.2019.4992
Lalani, N., & Cai, Y. (2022). Palliative care for rural growth and wellbeing: identifying perceived barriers and facilitators in access to palliative care in rural Indiana, USA. BMC Palliative Care, 21(1). https://doi.org/10.1186/S12904-022-00913-8
Leniz, J., Higginson, I. J., Yi, D., Ul-Haq, Z., Lucas, A., & Sleeman, K. E. (2021). Identification of palliative care needs among people with dementia and its association with acute hospital care and community service use at the end-of-life: A retrospective cohort study using linked primary, community and secondary care data. Palliative Medicine, 35(9), 1691-1700. https://doi.org/10.1177/02692163211019897/ASSET/IMAGES/LARGE/10.1177_02692163211019897-FIG1.JPEG
Lindell, K. O., Klein, S. J., Veatch, M. S., Gibson, K. F., Kass, D. J., Nouraie, M., & Rosenzweig, M. Q. (2021). Nurse-Led Palliative Care Clinical Trial Improves Knowledge and Preparedness in Caregivers of Patients with Idiopathic Pulmonary Fibrosis. Annals of the American Thoracic Society, 18(11), 1811-1821. https://doi.org/10.1513/ANNALSATS.202012-1494OC
Ma, J., Chi, S., Buettner, B., Pollard, K., Muir, M., Kolekar, C., Al-Hammadi, N., Chen, L., Kollef, M., & Dans, M. (2019). Early Palliative Care Consultation in the Medical ICU. Critical Care Medicine, 47(12), 1707-1715. https://doi.org/10.1097/CCM.0000000000004016
Metzger, M., Yoder, J., Fitzgibbon, K., Blackhall, L., & Abdel-Rahman, E. (2021). Nephrology and Palliative Care Collaboration in the Care of Patients With Advanced Kidney Disease: Results of a Clinician Survey. Kidney medicine, 3(3), 368-377.e1. https://doi.org/10.1016/J.XKME.2021.01.008
Mizuno, A., Miyashita, M., Kohno, T., Tokuda, Y., Fujimoto, S., Nakamura, M., Takayama, M., Niwa, K., Fukuda, T., Ishimatsu, S., Kinoshita, S., Oishi, S., Mochizuki, H., Utsunomiya, A., Takada, Y., Ochiai, R., Mochizuki, T., Nagao, K., Yoshida, S., … Anzai, T. (2020). Quality indicators of palliative care for acute cardiovascular diseases. Journal of cardiology, 76(2), 177-183. https://doi.org/10.1016/J.JJCC.2020.02.010
Ng, A. Y. M., Wong, F. K. Y., & Lee, P. H. (2016). Effects of a transitional palliative care model on patients with end-stage heart failure: study protocol for a randomized controlled trial. Trials, 17(1). https://doi.org/10.1186/S13063-016-1303-7
Noppe, D., Veen, H. in ‘t, & Mooren, K. (2019). COPD patients in need of palliative care: Identification after hospitalization through the surprise question. Chronic Respiratory Disease, 16, 147997231879621. https://doi.org/10.1177/1479972318796219
O’Donnell, A. E., Schaefer, K. G., Stevenson, L. W., Devoe, K., Walsh, K., Mehra, M. R., & Desai, A. S. (2018). Social Worker-Aided Palliative Care Intervention in High-risk Patients With Heart Failure (SWAP-HF): A Pilot Randomized Clinical Trial. JAMA cardiology, 3(6), 516-519. https://doi.org/10.1001/JAMACARDIO.2018.0589
Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D., Shamseer, L., Tetzlaff, J. M., Akl, E. A., Brennan, S. E., Chou, R., Glanville, J., Grimshaw, J. M., Hróbjartsson, A., Lalu, M. M., Li, T., Loder, E. W., Mayo-Wilson, E., McDonald, S., … Alonso-Fernández, S. (2021). Declaración PRISMA 2020: una guía actualizada para la publicación de revisiones sistemáticas. Revista Española de Cardiología, 74(9), 790-799. https://doi.org/10.1016/j.recesp.2021.06.016
Pesut, B., Hooper, B., Jacobsen, M., Nielsen, B., Falk, M., & O ‘Connor, B. P. (2017). Nurse-led navigation to provide early palliative care in rural areas: a pilot study. BMC Palliative Care, 16(1), 37. https://doi.org/10.1186/s12904-017-0211-2
Piamjariyakul, U., Petitte, T., Smothers, A., Wen, S., Morrissey, E., Young, S., Sokos, G., Moss, A. H., & Smith, C. E. (2019). Study protocol of coaching end-of-life palliative care for advanced heart failure patients and their family caregivers in rural appalachia: a randomized controlled trial. BMC palliative care, 18(1). https://doi.org/10.1186/S12904-019-0500-Z
Pype, P., Mertens, F., Wens, J., Stes, A., Van Den Eynden, B., & Deveugele, M. (2015). Preparing palliative home care nurses to act as facilitators for physicians’ learning: Evaluation of a training programme. Palliative medicine, 29(5), 458-463. https://doi.org/10.1177/0269216314560391
Rodríguez, T., Dávalos-Batallas, V., Vargas-Martínez, A.-M., López, L., Bonilla-Sierra, P., Lomas-Campos, M.-M., & Leon-Larios, F. (2021). Implementation and Knowledge of the Clinical Practice Guide for Palliative Care in the Ecuadorian Primary Care Level. International Journal of Environmental Research and Public Health, 18(21), 11573. https://doi.org/10.3390/ijerph182111573
Sarkis, R., Catalá-López, F., Aromataris, E., & Lockwood, C. (2021). How to properly use the PRISMA Statement. Systematic Reviews, 10(1), 1-3. https://doi.org/10.1186/S13643-021-01671-Z/METRICS
Scherer, J. S., Rau, M. E., Krieger, A., Xia, Y., Zhong, H., Brody, A., Charytan, D. M., & Chodosh, J. (2022). A Pilot Randomized Controlled Trial of Integrated Palliative Care and Nephrology Care. Kidney360, 3(10), 1720-1729. https://doi.org/10.34067/KID.0000352022
Shinall, M. C., Karlekar, M., Martin, S., Gatto, C. L., Misra, S., Chung, C. Y., Porayko, M. K., Scanga, A. E., Schneider, N. J., Ely, E. W., Pulley, J. M., Jerome, R. N., Dear, M. L., Conway, D., Buie, R., Liu, D., Lindsell, C. J., & Bernard, G. R. (2019). COMPASS: A Pilot Trial of an Early Palliative Care Intervention for Patients With End-Stage Liver Disease. Journal of Pain and Symptom Management, 58(4), 614-622.e3. https://doi.org/10.1016/j.jpainsymman.2019.06.023
Souza, P. N., Miranda, E. J. P. de, Cruz, R., & Forte, D. N. (2016). Palliative care for patients with HIV/AIDS admitted to intensive care units. Revista Brasileira de Terapia Intensiva, 28(3). https://doi.org/10.5935/0103-507X.20160054
Tan, A. J., Yamarik, R., Brody, A. A., Chung, F. R., & Grudzen, C. (2021). Development and protocol for a nurse-led telephonic palliative care program. Nursing Outlook, 69(4), 631. https://doi.org/10.1016/J.OUTLOOK.2020.12.011
Walshe, C. (2020). Aims, actions and advance care planning by district nurses providing palliative care: an ethnographic observational study. British Journal of Community Nursing, 25(6), 276-286. https://doi.org/10.12968/bjcn.2020.25.6.276
Wong, F. K. Y., Ng, A. Y. M., Lee, P. H., Lam, P. T., Ng, J. S. C., Ng, N. H. Y., & Sham, M. M. K. (2016). Effects of a transitional palliative care model on patients with end-stage heart failure: a randomised controlled trial. Heart (British Cardiac Society), 102(14), 1100-1108. https://doi.org/10.1136/HEARTJNL-2015-308638
Publicado
Número
Sección
Licencia
Derechos de autor 2024 Bertha Giovanna Pinos Urgilés, María Teresa Ochoa Crespo, José Luis Carvajal Bustos
Esta obra está bajo una licencia internacional Creative Commons Atribución 4.0.
