The ‘way of flowers’ and the care of patients with amyotrophic lateral sclerosis in Japan

Arxiu D’Etnografia de Catalunya 21:27-68 (2020)
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Abstract

Tracheostomy with invasive ventilation may be required for the survival of patients at advanced stages of amyotrophic lateral sclerosis. In Japan it has been shown that a proactive approach toward TIV may prolong the survival of ALS patients by over 10 years by preventing the lethal respiratory failure that generally occurs within 3-5 years of the onset of the disease. Measures to prolong life expectancy without foregoing quality of life have produced better results in Japan than in other developed countries. This ‘Japanese bias’ has been attributed to socio-cultural and religious factors as well as to the availability of material resources in Japan. In this article, we use the concepts of onozukara in kadō and amae to illuminate features of patient care that may contribute to this ‘Japanese bias’.

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Fernando Vidal
Universitat Autonoma de Barcelona

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