Deontological aspects of the amyotrophic lateral sclerosis
https://doi.org/10.17650/2222-8721-2017-7-4-56-60
Abstract
One of the significant problems in deontology is the degree of awareness of terminally ill patients regarding the diagnosis and prognosis of their disease. This topic is complex and relevant, it touches ethical and psychological, legal and medical aspects. The article discusses the positive and negative aspects of fully informing patients with amyotrophic lateral sclerosis about the fatal diagnosis. There are 2 clinical cases reflecting different approaches of this complex issue: full awareness and concealment of the diagnosis.
About the Authors
T. M. Alekseeva
Federal Almazov North-Western Medical Research Center
Russian Federation
2 Akkuratova St., Saint Petersburg 197341, Russia
Russian Federation
2 Akkuratova St., Saint Petersburg 197341, Russia
V. S. Demeshonok
I.I. Mechnikov North-Western State Medical University, Ministry of Health of Russia
Russian Federation
47 Piskarevskiy Prospekt, Saint Petersburg 195067, Russia
Russian Federation
47 Piskarevskiy Prospekt, Saint Petersburg 195067, Russia
S. N. Zhulev
I.I. Mechnikov North-Western State Medical University, Ministry of Health of Russia
Russian Federation
47 Piskarevskiy Prospekt, Saint Petersburg 195067, Russia
Russian Federation
47 Piskarevskiy Prospekt, Saint Petersburg 195067, Russia
References
1. Vedlink J.H., Van den Berg L.H., Wokke J.H. The future of motor neuron: the challenge is in the genes. J Neurol 2004;251(4):491–500. DOI: 10.1007/s00415-004-0322-6. PMID: 15083302.
2. Couratier P., Corcia P., Lautrette G. et al. Epidemiology of amyotrophic lateral sclerosis: a review of literature. Rev Neurol (Paris) 2016;172(1):37–45. DOI: 10.1016/j.neurol.2015.11.002. PMID: 26727307.
3. Marin B., Boumédiene F., Logroscino G. et al. Variation in worldwide incidence of amyotrophic lateral sclerosis: a metaanalysis. Int J Epidemiol 2017;46(1): 57–74. DOI: 10.1093/ije/dyw061. PMID: 27185810.
4. Logroscino G., Traynor B.J., Hardiman O. et al. Descriptive epidemiology of amyotrophic lateral sclerosis: new evidence and unsolved issues. J Neurol Neurosurg Psychiatry 2008;79(1):6–11. DOI: 10.1136/jnnp.2006.104828. PMID: 18079297.
5. Захарова М.Н., Иллариошкин С.Н., Лысогорская Е.В. и др. Боковой амиотрофический склероз. В кн.: Неврология. Национальное руководство. Краткое издание. Под ред. Е.И. Гусева, А.Н. Коновалова, А.Б. Гехт. М.: ГЭОТАР-Медиа, 2014. 688 с. [Zakharova M.N., Illarioshkin S.N., Lysogorskaya E.V. et al. Amyotrophic lateral sclerosis. In book: Neurology. National Guidelines. Abridged edition. Eds.: E.I. Gusev, A.N. Konovalov, A.B. Gekht. Moscow: GEOTAR-Media, 2014. 688 p. (In Russ.)].
6. Andersen P.M., Abrahams S., Borasio G.D. et al. EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS) – revised report of an EFNS task force. Eur J Neurol 2012;19(3):360–75. DOI: 10.1111/j.1468-1331.2011.03501.x. PMID: 21914052.
7. Чулкова В.А. Информирование онкологического больного. Учебное пособие. Издание 2-е, дополненное. СПб.: Ладога, 2013. 68 с. [Chulkova V.A. Informing an oncological patient. Textbook. 2nd edn, updated. Saint Petersburg: Ladoga, 2013. 68 p. (In Russ.)].
8. Левицкий Г.Н., Гилод В.М., Левин О.С. Специфическая фобия бокового амиотрофического склероза: алсфобия. Журнал неврологии и психиатрии им. С.С. Корсакова 2012;112 (8):4–6. [Levitskiy G.N., Gilod V.M., Levin O.S. A specific phobia of amyotrophic lateral sclerosis (ALS phobia). Zhurnal nevrologii i psikhiatrii im. S.S. Korsakova = S.S. Korsakov Journal of Neurology and Psychiatry 2012;112 (8):4–6. (In Russ.)].
9. Teno J.M., Gruneir A., Schwartz Z. et al. Association between advance directives and quality of end-of-life care: a national study. Am Geriatr Soc 2007;55(2):189–94. DOI: 10.1111/j.1532-5415.2007.01045.x. PMID: 17302654.
10. Detering K.M., Hancock A.D., Reade M.C., Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010;340:1345. DOI: 10.1136/bmj.c1345. PMID: 20332506.
11. Hogden A., Greenfield D., Nugus P. et al. What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives. Patient Prefer Adherence 2012;6:829–38. DOI: 10.2147/PPA.S37851. PMID: 23226006.
12. Connolly S., Galvin M., Hardiman O. Endof-life management in patients with amyotrophic lateral sclerosis. Lancet Neurol 2015;14(4):435–42. DOI: 10.1016/S1474-4422(14)70221-2. PMID: 25728958.
Review
For citations:
Alekseeva T.M., Demeshonok V.S., Zhulev S.N. Deontological aspects of the amyotrophic lateral sclerosis. Neuromuscular Diseases. 2017;7(4):56-60. (In Russ.) https://doi.org/10.17650/2222-8721-2017-7-4-56-60
Views:
1019
Email this article 