Consideraciones bioéticas en el manejo de la esclerosis lateral amiotróficaUna aproximación al quehacer fonoaudiológico

  1. Sepúlveda, Jorge 1
  1. 1 Escuela de Fonoaudiología; Facultad de Odontología y Ciencias de la Rehabilitación; Universidad San Sebastián, Sede Valdivia; Valdivia; Chile
Journal:
Revista de Investigación e Innovación en Ciencias de la Salud: RIICS

ISSN: 2665-2056

Year of publication: 2024

Volume: 6

Issue: 1

Pages: 169-180

Type: Article

DOI: 10.46634/RIICS.252 DIALNET GOOGLE SCHOLAR lock_openDialnet editor

More publications in: Revista de Investigación e Innovación en Ciencias de la Salud: RIICS

Abstract

Introduction. Amyotrophic lateral sclerosis (ALS) is the most common form of degenerative motor neuron disease in adulthood and is considered a terminal disease. For this reason, the actions of the speech therapist must consider respect for basic bioethical principles to guarantee adequate assistance. Objective. To know those bioethical considerations related to the management and study of people with ALS to then provide an approach to speech therapy. Methodology. A bibliographic search was carried out in the PubMed, Scopus, and SciELO databases. Articles published from 2000 to June 2023 were filtered and those that addressed a bioethical component in the population with ALS were selected. Results. Aspects related to the use of informed consent and shared decision-making stood out as essential elements to support people's autonomy. Conclusion. Proper communication and shared decision-making are key to respecting people's autonomy. In turn, the standardization of procedures through clinical research will contribute to compliance with the bioethical principles of beneficence and non-maleficence, essential for professional practice.

Bibliographic References

  • Borasio GD, Miller RG. Clinical Characteristics and Management of ALS. Semin Neurol [Internet]. 2001;21(2):155-66. doi: https://doi.org/10.1055/s-2001-15268
  • Pelluchon C. La autonomía quebrada. Bioética y filosofía. 1st ed. Vol. 10. Bogotá: Universidad El Bosque; 2013. 406 p.
  • Meyer T. Amyotrophe Lateralsklerose (ALS) – Diagnose, Verlauf und neue Behandlungsoptionen. Dtsch Med Wochenschr [Internet]. 2021 Dec 8;146(24/25):1613–18. doi: https://doi.org/10.1055/a-1562-7882
  • Segovia de Arana JM, Mora Teruel F, coordinators. Enfermedades neurodegenerativas. Madrid: Farmaindustria; 2002. 221 p.
  • Grad LI, Rouleau GA, Ravits J, Cashman NR. Clinical Spectrum of Amyotrophic Lateral Sclerosis (ALS). Cold Spring Harb Perspect Med [Internet]. 2017 Aug;7(8):a024117. doi: https://doi.org/10.1101/cshperspect.a024117
  • Soriani MH, Desnuelle C. Care management in amyotrophic lateral sclerosis. Rev Neurol (Paris) [Internet]. 2017 May;173(5):288-99. doi: https://doi.org/10.1016/j.neurol.2017.03.031
  • Masrori P, Van Damme P. Amyotrophic lateral sclerosis: a clinical review. Eur J Neurol. 2020 Oct;27(10):1918–29. doi: https://doi.org/10.1111/ene.14393
  • Sancho PO, Boisson D. What are management practices for speech therapy in amyotrophic lateral sclerosis? Rev Neurol (Paris) [Internet]. 2006 Jun;162(Suppl 2):4S273–74. doi: https://doi.org/10.1016/S0035-3787(06)75199-2
  • Lévêque N. Quelles sont les modalités de la prise en charge orthophonique des patients atteints de Sclérose Latérale Amyotrophique ? Rev Neurol (Paris) [Internet]. 2006 Jun;162(Suppl 2):269–72. doi: https://doi.org/10.1016/S0035-3787(06)75198-0
  • Eckman S, Roe J. Speech and language therapists in palliative care: what do we have to offer? Int J Palliat Nurs [Internet]. 2005 Apr;11(4):179-81. doi: https://doi.org/10.12968/ijpn.2005.11.4.28783
  • Oliveira ASB, Pereira RDB. Amyotrophic lateral sclerosis (ALS): three letters that change the people’s life. For ever. Arq Neuropsiquiatr [Internet]. 2009 Sep;67(3a):750-82. doi: https://doi.org/10.1590/S0004-282X2009000400040
  • Tobar-Fredes R, Olivares-Matus CA, Tapia-Saavedra S. Fonoaudiología en cuidados paliativos para adultos y adultos mayores: fundamentos, roles, abordajes y desafíos. Rev. chil fonoaudiol [Internet]. 2021 Nov 13;20:1-16. doi: https://doi.org/10.5354/0719-4692.2021.58486
  • Acevedo Pérez I. Aspectos éticos en la investigación científica. Cienc enferm [Internet]. 2002 Jun;8(1):15-18. doi: https://doi.org/10.4067/S0717-95532002000100003
  • Calzada Sierra DJ. Bioethical considerations in the approach to patients with amyotrophic lateral sclerosis. Rev Neurol [Internet]. 2001;32(10):952-57. doi: https://doi.org/10.33588/rn.3210.2000463
  • Azulay A. Los principios bioéticos: ¿se aplican en la situación de enfermedad terminal?. An Med Interna [Internet]. 2001;18(12):650-54. doi: https://doi.org/10.4321/s0212-71992001001200009
  • Siurana Aparisi JC. Los principios de la bioética y el surgimiento de una bioética intercultural. Veritas [Internet]. 2010 Mar;(22):121-57. doi: https://doi.org/10.4067/S0718-92732010000100006
  • Strand E. A. Clinical and Professional Ethics in the Management of Motor Speech Disorders. Semin Speech Lang [Internet]. 2003;24(4):301-12. doi: https://doi.org/10.1055/s-2004-815583
  • Kummer A, Turner J. Ethics in the Practice of Speech-Language Pathology in Health Care Settings. Semin Speech Lang [Internet]. 2011 Nov;32(04):330-37. doi: https://doi.org/10.1055/s-0031-1292758
  • Chabon S, Morris J, Lemoncello R. Ethical Deliberation: A Foundation for Evidence-Based Practice. Semin Speech Lang [Internet]. 2011 Nov;32(4):298-308. doi: https://doi.org/10.1055/s-0031-1292755
  • Green BN, Johnson CD, Adams A. Writing narrative literature reviews for peer-reviewed journals: secrets of the trade. J Chiropr Med [Internet]. 2006 Sep;5(3):101-17. doi: https://doi.org/10.1016/S0899-3467(07)60142-6
  • Alquati S, Ghirotto L, De Panfilis L, Autelitano C, Bertocchi E, Artioli G, et al. Negotiating the Beginning of Care: A Grounded Theory Study of Health Services for Amyotrophic Lateral Sclerosis. Brain Sci [Internet]. 2022 Nov 26;12(12):1-14. Disponible en: https://pubmed.ncbi.nlm.nih.gov/36552083/
  • Scull Torres M. La observancia de la bioética en el cuidado paliativo de enfermos con esclerosis lateral amiotrófica. Pers Bioet [Internet]. 2019 Jun 26;23(1):111-21. doi: https://doi.org/10.5294/pebi.2019.23.1.7
  • Kim SY, Wilson R, De Vries R, Ryan KA, Holloway RG, Kieburtz K. Are patients with amyotrophic lateral sclerosis at risk of a therapeutic misconception? J Med Ethics [Internet]. 2016 Aug;42(8):514-18. doi: https://doi.org/10.1136/medethics-2015-103319
  • Nolan MT, Kub J, Hughes MT, Terry PB, Astrow AB, Carbo CA, et al. Family health care decision making and self-efficacy with patients with ALS at the end of life. Palliat Support Care [Internet]. 2008;6(3):273-80. doi: https://doi.org/10.1017/S1478951508000412
  • Kim SY, Wilson R, De Vries R, Kim HM, Holloway RG, Kieburtz K. “It is not guaranteed that you will benefit”: True but misleading? Clin Trials [Internet]. 2015;12(4):424-31. doi: https://doi.org/10.1177/1740774515585120
  • Mcgaughey JW, Volpe RL. The Case: A Son’s Refusal. Camb Q Healthc Ethics [Internet]. 2010 Oct;19(4):530-40. doi: https://doi.org/10.1017/S0963180110000435
  • Appelbaum PS, Roth LH, Lidz CW, Benson P, Winslade W. False Hopes and Best Data: Consent to Research and the Therapeutic Misconception. Hastings Cent Rep [Internet]. 1987 Apr;17(2):20-4. doi: https://doi.org/10.2307/3562038
  • Mallardi V. The origin of informed consent. Acta Otorhinolaryngol Ital [Internet]. 2005 Oct;25(5):312-27. Disponible en: https://www.actaitalica.it/issues/2005/5-05/mallardi.pdf
  • Scull Torres M. Consentimiento informado en los cuidados paliativos de pacientes con esclerosis lateral amiotrófica. Rev habanera cienc méd [Internet]. 2018;17(6):806-907. Disponible en: https://revhabanera.sld.cu/index.php/rhab/article/view/2545
  • Churchill LR, King NMP, Henderson GE. Why We Should Continue to Worry about the Therapeutic Misconception. J Clin Ethics [Internet]. 2013;24(4):381-86. doi: https://doi.org/10.1086/JCE201324409
  • Eltorai AEM, Besdine RW. Advance directive repository. Aging Clin Exp Res [Internet]. 2015;27(1):97-8. doi: https://doi.org/10.1007/s40520-014-0237-8
  • Diestre Ortín G, González Sequero V, Collell Domènech N, Pérez López F, Hernando Robles P. Planificación anticipada de decisiones en las enfermedades crónicas avanzadas. Rev Esp Geriatr Gerontol [Internet]. 2013;48(5):228-31. doi: https://doi.org/10.1016/j.regg.2013.01.001
  • Kenny B. Food Culture, Preferences and Ethics in Dysphagia Management. Bioethics [Internet]. 2015 Nov;29(9):646-52. doi: https://doi.org/10.1111/bioe.12189
  • Lipman TO. Ethics and gastrointestinal artificial feeding. Curr Gastroenterol Rep [Internet]. 2004 Aug;6(4):314-19. doi: https://doi.org/10.1007/s11894-004-0084-4
  • Leslie P, Lisiecka D. Ethical considerations in the care of people with eating, drinking and swallowing difficulties. Curr Opin Otolaryngol Head Neck Surg [Internet]. 2022 Jun;30(3):182-87. doi: https://doi.org/10.1097/MOO.0000000000000803
  • Luchesi KF, Silveira IC. Cuidados paliativos, esclerose lateral amiotrófica e deglutição: estudo de caso. Codas [Internet]. 2018 Aug 30;30(5):1-6. doi: https://doi.org/10.1590/2317-1782/20182017215
  • Fernandes IAM, Menezes ROA, Rego G. EMPATIA: A Guide for Communicating the Diagnosis of Neuromuscular Diseases. Int J Environ Res Public Health [Internet]. 2022 Aug 9;19(16):1-15. Disponible en: https://pubmed.ncbi.nlm.nih.gov/36011430/
  • Leslie P, Lisiecka D. Ethical Issues in Dysphagia Management. Semin Speech Lang [Internet]. 2020 Jun;41(3):257-65. doi: https://doi.org/10.1055/s-0040-1710561
  • Mitsumoto H, Rabkin JG. Palliative Care for Patients with Amyotrophic Lateral Sclerosis. “Prepare for the Worst and Hope for the Best”. JAMA [Internet]. 2007 Jul 11;298(2):207-16. doi: https://doi.org/10.1001/jama.298.2.207
Data source: Dialnet