The full spectrum of ethical issues in the care of patients with ALS: a systematic qualitative review
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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.
KeywordsAmyotrophic lateral sclerosis Ethics Legal issues Palliative care
Compliance with 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.
- 1.The EFNS Task Force on Diagnosis, Management of Amyotrophic Lateral Sclerosis, Andersen PM, Abrahams S, Borasio GD, de Carvalho M, Chio A, Van Damme P, Hardiman O, Kollewe K, Morrison KE, Petri S, Pradat P, Silani V, Tomik B, Wasner M, Weber M (2012) EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS) revised report of an EFNS task force. Eur J Neurol 19:360–375Google Scholar
- 2.Societa Italiana di Neurologia (SIN) Working Group “Bioethics and Neurology” (1995) Ethical issues in the care of patients with amyotrophic lateral sclerosis. Ital J Neurol Sci 16:329–332Google Scholar
- 8.Beauchamp TL, Childress JF (2008) Principles of biomedical ethics. Oxford University Press, OxfordGoogle Scholar
- 11.Strauss A, Corbin JM (1998) Basics of qualitative research: techniques and procedures for developing grounded theory. Sage PublicationsGoogle Scholar
- 17.Russell JA (1998) Ethical considerations in disease management of amyotrophic lateral sclerosis: a cross-cultural, worldwide perspective. J Neurol 245(Suppl 2):S4–S6 (discussion S29) Google Scholar
- 28.Bedlack RS, Mitsumoto H (2012) Amyotrophic lateral sclerosis: a patient care guide for clinicians. Demos Medical Publishing, USAGoogle Scholar
- 29.Guion L (2010) Respiratory Management of ALS: amyotrophic lateral sclerosis. Jones and Bartlett LearningGoogle Scholar
- 30.Mitsumoto H (2009) Amyotrophic lateral sclerosis: a guide for patients and families: third edition. Demos Medical Publishing, USAGoogle Scholar
- 31.Oliver D, Borasio GD, Walsh D (2000) Palliative care in amyotrophic lateral sclerosis (motor Neurone Disease). Oxford University Press, OxfordGoogle Scholar
- 40.Wicks P, Abrahams S, Leigh PN, Goldstein LH (2007) A rapid screening battery to identify frontal dysfunction in patients with ALS. Neurology 69:118–119 (author reply 119–120) Google Scholar
- 41.Perrin KO (2008) Health maintenance across the life span. In: Perrin KO, McGhee J (eds) Quick Look nursing: ethics and conflict. Jones and Bartlett Learning, pp 77–90Google Scholar