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Journal of Neurology

, Volume 263, Issue 2, pp 201–209 | Cite as

The full spectrum of ethical issues in the care of patients with ALS: a systematic qualitative review

  • F. Seitzer
  • H. Kahrass
  • G. Neitzke
  • D. Strech
Review

Abstract

Dealing systematically with ethical issues in amyotrophic lateral sclerosis (ALS) care requires an unbiased awareness of all the relevant ethical issues. The aim of the study was to determine systematically and transparently the full spectrum of ethical issues in ALS care. We conducted a systematic review in Medline and Google Books (restricted to English and German literature published between 1993 and 2014). We applied qualitative text analysis and normative analysis to categorise the spectrum of ethical issues in ALS care. The literature review retrieved 56 references that together mentioned a spectrum of 103 ethical issues in ALS care. The spectrum was structured into six major categories that consist of first and second-order categories of ethical issues. The systematically derived spectrum of ethical issues in ALS care presented in this paper raises awareness and understanding of the complexity of ethical issues in ALS care. It also offers a basis for the systematic development of informational and training materials for health professionals, patients and their relatives, and society as a whole. Finally, it supports a rational and fair selection of all those ethical issues that should be addressed in health policies, position papers and clinical practice guidelines. Further research is needed to identify ways to systematically select the most relevant ethical issues not only in the clinical environment, but also for the development of clinical practice guidelines.

Keywords

Amyotrophic lateral sclerosis Ethics Legal issues Palliative care 

Notes

Compliance with ethical standards

Ethical standards

The manuscript does not contain clinical studies or patient data.

Conflicts of interest

The authors declare that they have no conflict of interest.

Supplementary material

415_2015_7867_MOESM1_ESM.pdf (235 kb)
Supplementary material 1 (PDF 235 kb)
415_2015_7867_MOESM2_ESM.pdf (63 kb)
Supplementary material 2 (PDF 63 kb)

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Copyright information

© Springer-Verlag Berlin Heidelberg 2015

Authors and Affiliations

  1. 1.Hannover Medical SchoolInstitute for History, Ethics and Philosophy of MedicineHannoverGermany

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