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.
Similar content being viewed by others
References
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 19:360–375
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 16:329–332
Werth JL (2001) Using the Youk-Kevorkian case to teach about euthanasia and other end-of-life issues. Death Stud 25:151–177
Strech D, Mertz M, Knuppel H, Neitzke G, Schmidhuber M (2013) The full spectrum of ethical issues in dementia care: systematic qualitative review. Br J Psychiatry 202:400–406
Knuppel H, Mertz M, Schmidhuber M, Neitzke G, Strech D (2013) Inclusion of ethical issues in dementia guidelines: a thematic text analysis. PLoS Med 10:e1001498
McCluskey L (2007) Amyotrophic lateral sclerosis: ethical issues from diagnosis to end of life. NeuroRehabilitation 22:463–472
Eisen A, Krieger C (2013) Ethical considerations in the management of amyotrophic lateral sclerosis. Prog Neurobiol 110:45–53
Beauchamp TL, Childress JF (2008) Principles of biomedical ethics. Oxford University Press, Oxford
Medical Professionalism Project (2002) Medical professionalism in the new millennium: a physicians’ charter. Lancet 359:520–522
Oliver D (1993) Ethical issues in palliative care—an overview. Palliat Med 7:15–20
Strauss A, Corbin JM (1998) Basics of qualitative research: techniques and procedures for developing grounded theory. Sage Publications
Lemoignan J, Ells C (2010) Amyotrophic lateral sclerosis and assisted ventilation: how patients decide. Palliat Support Care 8:207–213
Bolmsjo I, Hermern G (2003) Conflicts of interest: experiences of close relatives of patients suffering from amyotrophic lateral sclerosis. Nurs Ethics 10:186–198
Calbert J, Campbell J, Russell L, White B, Wilms D (1997) The problems with “heroic measures”: the case of Mr. X. Orthop Nurs 16:63–66
Baumrucker SJ, Carter G, Morris GM, Stolick M, Sheldon JE, Brothers D (2006) Amyotrophic lateral sclerosis and physician assisted suicide. Am J Hosp Palliat Care 23:332–337
Mertz M, Strech D (2014) Systematic and transparent inclusion of ethical issues and recommendations in clinical practice guidelines: a six-step approach. Implement Sci 9:184
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)
Johnston WS, Hoskins K, McCluskey L (2011) Amyotrophic lateral sclerosis: ethical challenges. Neurology 76:S1–S5
Bahus MK, Steen PA, Forde R (2012) Law, ethics and clinical judgment in end-of-life decisions—how do Norwegian doctors think? Resuscitation 83:1369–1373
Baumrucker SJ, Stolick M, Carter GT, Mingle P, Oertli KA, Morris GM (2011) Legal but not always allowed: “physician aid in dying”. Am J Hosp Palliat Care 28:449–454
Borasio GD, Voltz R (1998) Discontinuation of mechanical ventilation in patients with amyotrophic lateral sclerosis. J Neurol 245:717–722
Ganzini L (2006) Artificial nutrition and hydration at the end of life: ethics and evidence. Palliat Support Care 4:135–143
Hayashi H, Oppenheimer EA (2003) ALS patients on TPPV: totally locked-in state, neurologic findings and ethical implications. Neurology 61:135–137
Hirano Y, Yamazaki Y (2010) Ethical issues in invasive mechanical ventilation for amyotrophic lateral sclerosis. Nurs Ethics 17:51–63
Rowland LP (1998) Assisted suicide and alternatives in amyotrophic lateral sclerosis. N Engl J Med 339:987–989
Russell JA, Williams MA, Drogan O (2010) Sedation for the imminently dying: survey results from the AAN Ethics Section. Neurology 74:1303–1309
Brahams D (1997) UK judge approves death free from mental pain. Lancet 350:1376
Bedlack RS, Mitsumoto H (2012) Amyotrophic lateral sclerosis: a patient care guide for clinicians. Demos Medical Publishing, USA
Guion L (2010) Respiratory Management of ALS: amyotrophic lateral sclerosis. Jones and Bartlett Learning
Mitsumoto H (2009) Amyotrophic lateral sclerosis: a guide for patients and families: third edition. Demos Medical Publishing, USA
Oliver D, Borasio GD, Walsh D (2000) Palliative care in amyotrophic lateral sclerosis (motor Neurone Disease). Oxford University Press, Oxford
Smith RA (2000) Effects of the early diagnosis of amyotrophic lateral sclerosis on the patient: disadvantages. Amyotroph Lateral Scler Other Motor Neuron Disord 1(Suppl 1):S75–S77
Eisen A, Mezei MM, Stewart HG, Fabros M, Gibson G, Andersen PM (2008) SOD1 gene mutations in ALS patients from British Columbia, Canada: clinical features, neurophysiology and ethical issues in management. Amyotroph Lateral Scler 9:108–119
Emilien G, Ponchon M, Caldas C, Isacson O, Maloteaux JM (2000) Impact of genomics on drug discovery and clinical medicine. QJM 93:391–423
Facioli AM, Amorim FF, de Almeida KJ (2012) A model for humanization in critical care. Perm J 16:75–77
Tramonti F, Bongioanni P, Fanciullacci C, Rossi B (2012) Balancing between autonomy and support: coping strategies by patients with amyotrophic lateral sclerosis. J Neurol Sci 320:106–109
Meran JG, Hamm M, Ganser A (1996) Patient education—support—help with decisions: ethical aspects in treatment of amyotrophic lateral sclerosis. Wien Med Wochenschr 146:190–194
Goldstein LH, Atkins L, Leigh PN (2003) Health-related locus of control: does it change in motor neurone disease (MND)? Amyotroph Lateral Scler Other Motor Neuron Disord 4:27–30
Vertrees SM (2012) Medical humanities, ethics, and disability—one fellow’s confession and transformation. Camb Q Healthc Ethics 21:260–266
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)
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 77–90
Kaufert J, Koch T (2003) Disability or end-of-life? Competing narratives in bioethics. Theor Med Bioeth 24:459–469
Poenisch C (1998) Merian Frederick’s story. N Engl J Med 339:996–998
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
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.
Electronic supplementary material
Below is the link to the electronic supplementary material.
Appendix
Appendix
See Table 2.
Rights and permissions
About this article
Cite this article
Seitzer, F., Kahrass, H., Neitzke, G. et al. The full spectrum of ethical issues in the care of patients with ALS: a systematic qualitative review. J Neurol 263, 201–209 (2016). https://doi.org/10.1007/s00415-015-7867-4
Received:
Revised:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00415-015-7867-4