You are here

  • Home
  • Archive
  • Volume 1, Issue 1
  • Advance care planning for adolescent patients with life-threatening neurological conditions: a survey of Japanese paediatric neurologists

Article Text

Article menu

Download PDFPDF

XML
Palliative Care
Original article
Advance care planning for adolescent patients with life-threatening neurological conditions: a survey of Japanese paediatric neurologists
  1. Nobuyuki Yotani1,2,
  2. Yoshiyuki Kizawa2,
  3. Haruo Shintaku3
  1. 1 Department of Palliative Medicine, National Centre for Child Health and Development, Tokyo, Japan
  2. 2 Department of Palliative Medicine, Kobe University School of Medicine, Kobe, Japan
  3. 3 Department of Pediatrics, Osaka City University Graduate School of Medicine, Osaka, Japan
  1. Correspondence to Dr Nobuyuki Yotani, National Centre for Child Health and Development, 2-10-1 Okura Setagaya-ku, Tokyo 157-8535, Japan; yotani-n{at}ncchd.go.jp

Abstract

Objective To evaluate current attitudes and barriers to advance care planning for adolescent patients with life-threatening conditions among paediatric neurologists.

Design Cross-sectional study. A self-reported questionnaire was administered to assess the practice of advance care planning, advance directives and barriers to advance care planning for adolescent patients with life-threatening conditions. All board-certified paediatric neurologists in Japan were surveyed and those who had experience in taking care of adolescent patients with decision-making capacity were analysed. We compared the results with those of paediatric haematologists reported previously.

Results In total, 186 paediatric neurologists were analysed. If the patient’s prognosis was <3 months, only about 30% of paediatric neurologists reported having discussions with patients, such as ‘do not attempt resuscitation’ orders (28%) and ventilator use (32%), whereas more than 70% did discuss these topics with patients’ families. About half of the paediatric neurologists did not discuss advance directives at the end of life with their patients, whereas over 75% did discuss advance directives with patients’ families. Compared with paediatric haematologists, paediatric neurologists had more end-of-life discussions with patients, such as where treatment and care will take place, do not attempt resuscitation orders, and the use of a ventilator, if the patient’s prognosis was >1 year.

Conclusion About half or less of the paediatric neurologists discussed advance care planning and advance directives with their adolescent patients who had life-threatening conditions, even if the patient’s prognosis was <3 months. They tended to discuss advance care planning and advance directives more with families than with patients themselves.

  • advance care planning
  • advance directive
  • end-of-life discussion
  • paediatric neurologist
  • adolescent health
  • neurological illness

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjpo-2017-000102

Statistics from Altmetric.com

    Request Permissions

    If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

    View Full Text

    Footnotes

    • Contributors NY conducted the research (including leading the literature review, collecting, analysing and interpreting data), led the drafting of this paper, contributed to critical revisions and shares accountability for this manuscript. YK acted as second supervisor on the research, helped design the project, aided in the interpretation and analysis of data, critically revised this paper and approved and shares accountability for this manuscript. HS acted as first supervisor on the research, helped design the project, aided in the interpretation and analysis of data, critically revised this paper and approved and shares accountability for this manuscript.

    • Funding This study was funded by the Ministry of Education, Culture, Sports, Science and Technology.

    • Competing interests None declared.

    • Ethics approval The Institutional Review Board of Osaka City University Medical School (Approval No. 3126).

    • Provenance and peer review Not commissioned; externally peer reviewed.