pp 1–11 | Cite as

Phenomenological Analysis of a Japanese Professional Caregiver Specialized in Patients with Amyotrophic Lateral Sclerosis

  • Yasuhiko Murakami
Original Paper


The present article is based on a interview with a Japanese experienced caregiver who specializes in patients with amyotrophic lateral sclerosis (ALS), which generally leads to the locked-in syndrome (LIS). Professional caregivers for ALS patients with ventilator experience two particular temporalities in their practice. First, they must monitor the patient continuously during a seven-hour stay. Because a single problem in the ventilator can have fatal consequences, the care of an ALS patient with a ventilator (who can neither speak nor push the nurse call button) requires long periods of sustained concentration. Second, trying to understand the signs of a patient with a ventilator sometimes requires three hours to go through ten alphabets. In addition to the huge effort that such communication requires, caregivers must complete the meaning of the signs with their imagination: the ten alphabets are not sufficient to understand what the patient really wants to say. This imaginative capacity, however, is based on a long relationship, which started when the patient was still able to speak and move. That is why, as this article will show, even when a patient has entered total LIS, the caregiver can continue to realize his or her wishes.


ALS Caregiver Ventilator Phenomenology Qualitative research Locked-in syndrome 



I wish to thank Ms. F. who generously participated to the study, Professor Fernando Vidal (Catalan Institution for Research and Advanced Studie) and Ms. Yumiko Kawaguchi (Japanese ALS Association) who encouraged the study and give precise advise and Ms. Emma Hoffmann (Osaka University) for her linguistic assistance.

Compliance with Ethical Standards

Conflicts of Interest

The author does not have any potential conflict of interest to disclose.

Research Involving Human Participants and/or Animals

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study. The study was examined and approved by the ethics committee of the auther’s institution.


  1. 1.
    Aoun, Samar M., Sianne Lee Connors, Lynn Priddis, Lauren J. Breen, and Sue Colyer. 2011. Motor Neurone disease family carers’ experiences of caring, palliative care and bereavement: An exploratory qualitative study. Palliative Medicine 26: 842–850.CrossRefGoogle Scholar
  2. 2.
    Cipolletta, Sabrina, and Linda Amicucci. 2015. The family experience of living with a person with amyotrophic lateral sclerosis: A qualitative study. International Journal of Psychology 50: 288–294.CrossRefGoogle Scholar
  3. 3.
    Ogino, Mieko. 2010. The survey report about the end-of-life care with ALS patients of the ALS physicians in Japan (in Japanese). Rinsho Shinkei Gaku [Clinical Neurology]. 50: 1026–1028.CrossRefGoogle Scholar
  4. 4.
    Tagami, Muneyoshi, Fumiharu Kimura, Hideto Nakajima, Shimon Ishida, Shinya Fujiwara, Yoshimitsu Doi, Takafumi Hosokawa, Kazushi Yamane, Kiichi Unoda, Takahiko Hirose, Hiroki Tani, Shin Ota, Takumi Ito Masakazu Sugino, Keiichi Shinoda, and Toshiaki Hanafusa. 2014. Tracheostomy and invasive ventilation in Japanese ALS patients: Decision-making and survival analysis: 1990–2010. Journal of the Neurological Sciences. 344: 158–164.CrossRefGoogle Scholar
  5. 5.
    Kimura, Fumiharu. 2016. Tracheostomy and invasive mechanical ventilation in amytrophic lateral sclerosis: Decision-making factors and survival analysis (in Japanese). Rinsho Shinkeigaku (Clinical Neurology). 56: 241–247.CrossRefGoogle Scholar
  6. 6.
    Rabkin, Judith, Mieko Ogino, Raymond Goetz, Martin McElhiney, Jonathan Hupf, Daragh Heitzman, Terry Heiman-Patterson, Robert Miller, Jonathan Katz, Catherine Lomen-Hoerth, Takashi Imai, Naoki Atsuta, Mitsuya Morita, Takahisa Tateishi, Tsuyoshi Matsumura, and Hiroshi Mitsumoto. 2014. Japanese and American ALS patient preferences regarding TIV (tracheostomy with invasive ventilation): A cross-national survey. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 15 (3–4): 185–191.CrossRefGoogle Scholar
  7. 7.
    JALSA [Japan ALS Association] 2018 (Web page in Japanese): Accessed 14 April 2018.
  8. 8.
    Kim, Chul-Hoon, and Myoung Soo Kim. 2014. Ventilator use, respiratory problems, and caregiver well-being in Korean patients with amyotrophic lateral sclerosis receiving home-based care. Journal of Neuroscience Nursing 46: E25–E32.CrossRefGoogle Scholar
  9. 9.
    Pagnini, Francesco. 2013. Psychological wellebeing and quality of life in amyotrophic laeral sclerosis a review. International Journal of Psychology 48: 194–205.CrossRefGoogle Scholar
  10. 10.
    Matsuda, Masami. 2005. Quality of care and the reality of a patient's life. Nursing Ethics 12: 555–556.CrossRefGoogle Scholar
  11. 11.
    Rabkin, Judith, Raymond Goetz, Jennifer Mary Murphy, Pam Factor-Litvak, Hiroshi Mitsumoto, and On behalf of the ALS COSMOS Study Group. 2016. Cognitive impairment, behavioral impairment, depression, and wish to die in an ALS cohort. Neurology 87: 1320–1328.CrossRefGoogle Scholar
  12. 12.
    Ministry of Health, Labour and Welfare. 2015. Report on the Promotion of the Visiting Service for Severe Patients (in Japanese). Accessed 14 March 2017.
  13. 13.
    Ministry of Health, Labour and Welfare. 2016. Report on the Fee of the Visiting Service (in Japanese). Accessed 14 March 2017.
  14. 14.
    Nishimura, Yumi, and Shoichi Matsuba. 2014. Phenomenological nursing study – Theory and its practice (in Japanese). Tokyo: Igaku-shôin.Google Scholar
  15. 15.
    Merleau-Ponty, Maurice. 1960. Signes. Paris: Gallimard.Google Scholar


  1. 1.
    Murakami, Yasuhiko. 2002. Lévinas phénoménologue. Grenoble: J. Millon, 1–336.Google Scholar
  2. 2.
    Murakami, Yasuhiko. 2008. Hyperbole – pour une psychopathologie lévinassienne. Amiens: Association pour la promotion de la phénoménologie, 1–110.Google Scholar
  3. 3.
    Murakami, Yasuhiko. 2010. Affection, autism and mental disorders: Husserl’s theory of meaning and psychopathology. Studia Phaenomenologica. 10: 193–204.CrossRefGoogle Scholar
  4. 4.
    Murakami, Yasuhiko. (2010 online/2013). Affection of contact and transcendental telepathy in schizophrenia and autism. Phenomenology and the Cognitive Sciences. 12(1), 1–16 (online)/ 179–194.Google Scholar
  5. 5.
    Murakami, Yasuhiko. 2015. Le soin infirmier dans l’hôpital psychiatrique au Japon et la mise hors circuit de l’institution médicale. Revue Institutions. 55: 57–71.Google Scholar

Copyright information

© Springer Nature B.V. 2018

Authors and Affiliations

  1. 1.School of Human SciencesOsaka UniversityOsakaJapan

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