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Review
The wish to die and hastening death in amyotrophic lateral sclerosis: A scoping review
  1. Anke Erdmann1,2,
  2. Celia Spoden1,
  3. Irene Hirschberg1 and
  4. Gerald Neitzke1
  1. 1 Institute for History, Ethics and Philosophy of Medicine, Hannover Medical School, Hannover, Germany
  2. 2 Institute for Experimental Medicine, Medical Ethics Working Group, Kiel University, Kiel, Germany
  1. Correspondence to Dr Celia Spoden, Institute for History, Ethics and Philosophy of Medicine, Hannover Medical School, Hannover, Germany; spoden.celia{at}mh-hannover.de

Abstract

Background Amyotrophic lateral sclerosis (ALS) develops into a life-threatening condition 2 to 4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, thoughts about hastening death are not uncommon.

Objectives Our aim was to examine the scope of literature on the wish to die in ALS and provide an insight into determinants and motives for different end-of-life options.

Methods We searched eight databases for English and German publications on death wishes in ALS for the period from 2008 to 2018 and updated the search up to May 2020. After the screening process, 213 full texts were included for the final analysis. We analysed the texts in MAXQDA, using deductively and inductively generated codes.

Results We identified end-of-life considerations, ranging from wishes to die without hastening death, to options with the possibility or intention of hastening death. Besides physical impairment, especially psychosocial factors, socio-demographic status and socio-cultural context have a great impact on decisions for life-shortening options. There is huge variation in the motives and determinants for end-of-life considerations between individuals, different societies, healthcare and legal systems.

Conclusions For a variety of reasons, the information and counselling provided on different options for sustaining life or hastening death is often incomplete and insufficient. Since the motives and determinants for the wish to hasten death are extremely diverse, healthcare professionals should investigate the reasons, meaning and strength of the desire to die to detect unmet needs and examine which interventions are appropriate in each individual case.

  • end of life care
  • neurological conditions
  • terminal care
  • social care
  • psychological care
  • supportive care
http://creativecommons.org/licenses/by-nc/4.0/

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, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjspcare-2020-002640

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    Footnotes

    • Contributors AE and CS contributed equally to this work: they conducted the database search, screened and extracted the data and wrote the first draft. GN and IH conceived and coordinated the project PALS-HD. All authors took part in the development of the study protocol for this scoping review, revised the manuscript and approved the final version.

    • Funding This scoping review is part of the study PALS-HD: “Preferences and needs of patients suffering from ALS concerning options of hastening death“, funded by the German Federal Ministry of Education and Research (BMBF) (Grant No. 01GY1715).

    • Competing interests None declared.

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