Tracheostomy with invasive ventilation for ALS patients: Neurologists’ roles in the US and Japan

Abstract

Our objective was to determine whether substantial differences in rates of TIV utilization in the U.S. and Japan are associated with the role of the treating neurologist. Questionnaires in English and Japanese were sent to neurologists who treated ALS patients in both countries. Questions included queries about rates of TIV use in their practices, level of encouragement of TIV use, the role of the neurologist in TIV decision making, management of patient/family requests to discontinue TIV once initiated, and personal choices if neurologists themselves had ALS. Results showed that 84% of American neurologists reported fewer than 10% of their patients had TIV, compared to 32% of Japanese. Americans less often encouraged TIV use (79% of American and 36% of Japanese seldom or never suggested or encouraged TIV). Finally, neurologists were asked whether they would choose TIV for themselves in the hypothetical scenario where they had ALS: over 70% of both groups declined TIV for themselves. In conclusion, consistent with past findings, Japanese neurologists were more likely to recommend TIV and more of their patients received TIV. Both groups believed their recommendations influence patient decisions. While Americans seldom recommended TIV to patients and most would not choose TIV for themselves, Japanese neurologists’ recommendations and personal choices diverged.

Key words::

• TIV
• tracheostomy
• ALS
• end-of-life decisions

Acknowledgements

We thank Ezgi Tiraki, Paul Barkus, Greg Carter, Daragh Heitzman and Donald Tamulonis, as well as the other neurologists in both the United States and Japan who responded to our survey. We thank the MDA and ALS associations for providing the names of affiliated ALS clinic directors in the U.S., and Wings Over Wall Street for a grant to support the project in the United States. M. Ogino received a Health and Labour Sciences Research Grant on Intractable Diseases from the Ministry of Health, Labour and Welfare of Japan to support the project in Japan.

Declaration of interest: J. Rabkin: Cephalon-Teva currently provides armodafinil for an NIH-funded study, as well as funds and product to complete an NIH-supported placebo controlled randomized clinical trial of armodafinil in 2010.

H. Mitsumoto received grants from Avanir, Knopp, Biogen Idec., and Cytokinetics for clinical trials and honoraria for participating in advisory board meetings from Avanir, Sanofi-Aventis, Shionogi, and Biogen Idec. He is now a member of the Data Safety Monitoring Board for the NeuralStem clinical trial. He received honoraria from Sanofi-Aventis Japan for giving seminars at the annual meetings of the Japanese Neurological Society in 2009 and 2010 in Japan. He received a conference grant to Columbia University for the 2011 International ALS Conference from NIDNS, NIH ORDR, MDA, ALS Association, ALS Society of Canada, Adams Foundation, Ride for Life, ALS Hope Foundation, Les Turner Foundation, Sanofi-Aventis, Biogen Idec, Knopp, and Avania.

The authors alone are responsible for the content and writing of the paper.