Palliative care in a patient with amyotrophic lateral sclerosis: case report in home care
DOI:
https://doi.org/10.34024/rnc.2023.v31.14939Keywords:
Palliative Care, Amyotrophic Lateral Sclerosis, Home Assistance, Interactive Ventilation SupportAbstract
Introduction. Amyotrophic Lateral Sclerosis (ALS) is a disease that affects motor neurons and evolves with changes in the motor capacity of the upper and lower limbs, speech, cognition and behavior, impairing the individual's functional abilities for activities of daily living. Objective. To describe a case report of a patient with amyotrophic lateral sclerosis and chronic respiratory failure using invasive mechanical ventilation, who was monitored by the palliative care team of a home care program at a public hospital. Method. Medical records were consulted, as well as a semi-structured interview with the patient's legal guardian and care giver, since the patient died. The information extracted from the medical records contained topics that favored the understanding of the history and clinical evolution (age, date of onset of the first symptoms, complementary exams, hospitalizations). Conclusion. Assistance in the home environment provides opportunities for the application of the guiding principles of palliative care, by supporting the patient and welcoming family members.
Metrics
References
Gozzer MM, Cola PC, Onofri SMM, Merola BN, Silva RGD. Achados videoendoscópicos da deglutição em diferentes consistências de alimento na Esclerose Lateral Amiotrófica. CoDAS 2020;32:1-5. https://doi.org/10.1590/2317-1782/20192018216
Guilherme IT, Pimenta F. Meditação mindfulness e esclerose lateral amiotrófica (ELA): uma revisão de literatura. Psicol Saúde Doenças 2018;19:57-63. https://doi.org/10.15309/18psd190109
Neto LL, Novais T, Júnior FM, Chun R. Repercussões das dificuldades de linguagem em pessoas com esclerose lateral amiotrófica e o impacto em suas vidas e na de seus cuidadores. CEFAC 2021;23:1-14. https://doi.org/10.1590/1982-0216/202123414120
Orsini M, Santanna M, Freitas MR, Trajano E, Lopes ML, Oliveira AB, et al. Therapeutic Exercise in Amyotrophic Lateral Sclerosis: What do we Expect from Anabolism Versus Catabolism? Neurology 2017;6:24-5. https://www.researchgate.net/publication/316688420_Therapeutic_Exercise_in_Amyotrophic_Lateral_Sclerosis_What_do_we_Expect_from_Anabolism_Versus_Catabolism
Victor GHGG. Cuidados Paliativos no Mundo. Rev Bras Cancerol 2016;62:267-70. https://doi.org/10.32635/2176- 9745.RBC.2016v62n3.343
Dal Bello-Haas V, Florence JM. Therapeutic exercise for people with amyotrophic lateral sclerosis or motor neurondisease. Cochrane Database Syst Rev 2013;2013(5):CD005229. https://doi.org/10.1002/14651858.CD005229.pub3
Menezes RA. Em busca da boa morte: antropologia dos cuidados paliativos. Rio de Janeiro: Garamond; 2004; 228p.
Torezoni CLM, Andrade LC. Aspectos clínicos e farmacológicos da Esclerose Lateral Amiotrófica. Rev Ibero-Am Human Cienc Edu 2022;8:1214-30. https://doi.org/10.51891/rease.v8i3.4695
Junior LE, Becker J, Schestatsky P, Rotta FT, Marrone CD, Gomes I. Prevalence of amyotrophic lateral sclerosis in the city of Porto Alegre, in Southern Brazil. Arq Neuropisiquiatr 2013;71:959–62. https://doi.org/10.1590/0004-282X20130177
Cellura E, Spataro R, Taiello AC, La Bella V. Factor saffecting the diagnostic delay in amyotrophic lateral sclerosis. Clin Neurol Neurosurg 2012;114:550-4. https://doi.org/10.1016/j.clineuro.2011.11.026
Pontes JF, Ferreira GMH, Fregonezi G, Sena-Evangelista KCMD, Junior DME. Força muscular respiratória e perfil postural e nutricional em crianças com doenças neuromusculares. Fisioter Mov 2012;25:253-61. https://doi.org/10.1590/S0103- 51502012000200002
Karam CY, Paganoni S, Joyce N, Carter GT, Bedlack R. Palliative Care Issues in Amyotrophic Lateral Sclerosis: An Evidenced- Based Review. Am J Hosp Palliative Med 2016;33:84-92. https://doi.org/10.1177/1049909114548719
Miller RG, Jackson CE, Kasarskis EJ, England JD, Forshew D, Johnston W, et al. Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Multidisciplinary care, symptom managemente, and cognitive/behavioral impairment (an evidence-based review). Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2009;73:1227-33. https://doi.org/:10.1212/WNL.0b013e3181bc0141
Nardino F, Olesiak LR, Quintana AM. Significações dos cuidados paliativos para profissionais de um serviço de atenção domiciliar. Psicol Cienc Profis 2021;41:1-16. https://doi.org/10.1590/1982-3703003222519
Lima CAS. Ortotanásia, cuidados paliativos e direitos humanos. Rev Soc Bras Clin Med 2015;13:14-7. http://files.bvs.br/upload/S/1679- 1010/2015/v13 n1/a4762.pdf
World Health Organization (WHO). Planning and implementing palliative care services: a guide for programme managers. Suíça; 2016; 91p. http://apps.who.int/iris/bitstream/10665/250584/1/9789241565417
-eng.pdf
Ricardo TC, Henrique AP. Academia Nacional de Cuidados Paliativos [ANCP]. Manual de cuidados paliativos. 2a. ed. Rio de Janeiro: Diagraphic; 2017; 592p.
Vasconcelos GB, Pereira PM. Cuidados paliativos em atenção domiciliar: uma revisão bibliográfica. Rev Adm Saúde 2018;18:1-18. http://doi.org/10.23973/ras.70.85
Ministério da Saúde. Portaria nº 825, de 25 de abril de 2016. Brasília: MS; 2016 (acessada em: 02/09/2022). Disponível em:
http://bvsms.saude.gov.br/bvs/saudelegis/gm/2016/prt0825_25_04_2016.html
Fahrner-Scott K, Zapata C, O'Riordan DL, Cohen E, Rosow L, Pantilat SZ, et al. Embedded Palliative Care for Amyotrophic Lateral Sclerosis: A Pilot Program and Lessons Learned. Neurol Clin Pract 2022;12:68-75. https://doi.org/10.1212/CPJ.0000000000001124
Souza GACS. Quando a proximidade da morte entra em casa: compreendendo os cuidados paliativos na atenção domiciliar (Dissertação). Natal: Universidade Federal do Rio Grande do Norte; 2018; 243f. https://repositorio.ufrn.br/handle/123456789/26669
Oliveira DAS, Cavalcante LSB, Carvalho RT. Sentimentos de pacientes em cuidados paliativos sobre modificações corporais ocasionadas pelo câncer. Psicol Cienc Profis 2019;39:1-13. https://doi.org/10.1590/1982-370300 3176879
Robinson MT, Holloway RG. Palliative Care in Neurology. Mayo Clin Proc 2017;92:1592-601. https://doi.org/10.1016/j.mayocp.2017.08.003
Creutzfeldt CJ, Robinson MT, Holloway RG. Neurologists as primary palliative care providers: Communication and practice approaches. Neurol Clin Pract 2016;6:40-8. https://doi.org/10.1212/CPJ.0000000000000213
Kübler-Ross E. Sobre a Morte e o Morrer. 10a. ed. São Paulo: WMF Martins Fontes; 2017; 341p.
Braz MS, Franco MHP. Profissionais Paliativistas e suas Contribuições na Prevenção de Luto Complicado. Psicol Cienc Profis 2017;37:90-105. https://doi.org/10.1590/1982-3703001702016
Downloads
Published
Issue
Section
License
Copyright (c) 2023 Roselene Soares de Oliveira, Constancy Roldan Tavares, Daniel de Souza Barbosa Nogueira, Sara Mascarenhas Crispim, Jamille Soares Moreira Alves, Cláudia de Carvalho Lima Freitas, Marcello Pontes de Siqueira
This work is licensed under a Creative Commons Attribution 4.0 International License.
How to Cite
Accepted 2023-07-25
Published 2023-08-23
