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

Yukiko Himeno, Osamu Inoue, Fernando Vidal

Resum

Tracheostomy with invasive ventilation (TIV) may be required for the survival of patients at advanced stages of amyotrophic lateral sclerosis (ALS). 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 (Japanese traditional flower art, also called ikebana) and amae (passive love) to illuminate features of patient care that may contribute to this ‘Japanese bias’.


Paraules clau

amyotrophic lateral sclerosis (ALS); tracheostomy with invasive ventilation (TIV); kadō (ikebana); locked-in syndrome (LIS); philosophy of basho

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DOI: https://doi.org/10.17345/aec21.37-68

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