Opinions of Japanese and American ALS caregivers regarding tracheostomy with invasive ventilation (TIV)

Abstract

Our objective was to learn more about possible factors contributing to the higher rates of tracheostomy with invasive ventilation (TIV) for ALS patients in Japan compared with the United States by eliciting attitudes of caregivers of ALS patients in both countries. One hundred and fifty-four American caregivers from five, geographically-distributed ALS clinics and 66 Japanese caregivers from six sites in Japan completed questionnaires regarding TIV. Results showed that 33% of American caregivers were in favor of TIV for their family member compared to 53% of Japanese caregivers; 44% of American and 37% of Japanese caregivers were undecided; and 22% of American and 10% of Japanese caregivers were opposed (p <.01). Within patient-caregiver dyads, agreement in the American sample was fair, while the Japanese dyads showed poor agreement. Maintaining quality of life and patients reaching a milestone were the most common reasons for favoring TIV in the American and Japanese samples, respectively. Reasons for opposing TIV did not significantly differ. Findings suggest that caregiver preferences may influence actual choices for ALS patients. More frequent endorsement of TIV by Japanese vs. American caregivers is consistent with higher rates of TIV among Japanese patients. The results reflect the importance of caregivers’ opinions in patient care.

Key words::

• ALS
• TIV
• caregivers
• Japanese/American survey
• end-of-life preferences

Acknowledgements

We thank MDA Wings Over Wall Street for a grant to support this project in the United States. M. Ogino received a Health and Labor Sciences Research Grant on Intractable Diseases from the Ministry of Health, Labor and Welfare of Japan to support this project in Japan. We thank Koko Muraoka, Toho University School of Nursing, for her assistance with translation and the caregivers who so generously took the time to participate in the study.

We also acknowledge and thank the members of the TIV Study Group for all their work pertaining to this manuscript:

USA: Columbia University Medical Center, New York, NY: Martin McElhiney, Jonathan Hupf; Texas Neurology, PA, Dallas, TX: Daragh Heitzman; Drexel University College of Medicine, Philadelphia, PA: Terry Heiman-Patterson; California Pacific Medical Center, San Francisco, CA: Robert Miller, Jonathan Katz; University of California, San Francisco, CA: Catherine Lomen-Hoerth.

Japan: Miyagi National Hospital, Miyagi: Takashi Imai; Nagoya University Hospital, Nagoya: Naoki Atsuta; Jichi Medical University, Tochigi: Mitsuya Morita; Kyushu University, Fukuoka: Takahisa Tateishi

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this paper.

Supplementary material available online

Supplementary clinical data.