Hostname: page-component-78c5997874-xbtfd Total loading time: 0 Render date: 2024-11-11T07:47:06.606Z Has data issue: false hasContentIssue false
  • English
  • Français

“Who Will I Be?”: Relational Identity, Living with Amyotrophic Lateral Sclerosis, and Future-Oriented Decisionmaking

Published online by Cambridge University Press:  07 September 2020

ERIKA VERSALOVIC  and
ERAN KLEIN
Get access Rights & Permissions [Opens in a new window]

Abstract

Patients with amyotrophic lateral sclerosis (ALS) face many difficult, timing-sensitive decisions over the course of their illness, weighing present versus future harms and benefits. Supplemented by interviews with people with ALS, we argue for a relational approach to understanding these decisions and their effects on identity. We highlight two critical aspects of the patient–caregiver relationship: (1) the extent to which each may rely on the other leaves their wellbeing intimately intertwined and (2) patients often require others to help with the imaginative task of considering possible futures for each therapeutic option. We show why family involvement in decisionmaking practices can be so critical, and shed light on the ways intimate others help preserve and protect people’s identities amidst the destabilizing uncertainty illness and treatment can bring.

Keywords

amyotrophic lateral sclerosisdecisionmakingethicscaregiveridentityneuroethics
Type
Articles
Information
Cambridge Quarterly of Healthcare Ethics , Volume 29 , Special Issue 4: Clinical Neuroethics , October 2020 , pp. 617 - 629
Copyright
© The Author(s), 2020. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Footnotes

Acknowledgment: This work was supported by NSF Award #EEC-1028725.

References

Notes

1. Miller, RG, Jackson, CE, Kasarskis, EJ, England, JD, Forshew, D, Johnston, W, Kalra, S, Katz, JS, Mitsumoto, H, Rosenfeld, J, Shoesmith, C. Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional, and respiratory therapies (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2009;73(15):1218–26.CrossRefGoogle ScholarPubMed

2. Miller, RG, Jackson, CE, Kasarskis, EJ, England, JD, Forshew, D, Johnson, W, et al. Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: Multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2009;73(15):1227–33.CrossRefGoogle ScholarPubMed

3. Andersen, PM, Abrahams, S, Borasio, GD, de Carvalho, M, Chio, A, Van Damme, , et al. European Federation of Neurological Societies Guidelines on the clinical management of amyotrophic lateral sclerosis – Revised report of an EFNS task force. European Journal of Neurology 2012;19:360–75.Google Scholar

4. Katzberg, HD, Benatar, M. Enteral tube feeding for amyotrophic lateral sclerosis/motor neuron disease. The Cochrane Database of Systematic Reviews 2006;4:CD004030. doi:10.1002/14651858.CD004030.pub3Google Scholar.

5. Stavroulakis, T, Baird, WO, Baxter, SK, Walsh, T, Shaw, PJ, McDermott, CJ. Factors influencing decision-making in relation to timing of gastronomy insertion in patients with motor-neurone disease. British Medical Journal Supportive & Palliative Care 2014;4:57–63 CrossRefGoogle Scholar.

6. Oliver, DJ, Turner, MR. Some difficult decisions in ALS/MND. Amyotrophic Lateral Sclerosis 2010;11(4):339–43CrossRefGoogle Scholar.

7. See note 2, Andersen et al. 2012.

8. See note 1, Miller et al. 2009.

9. See note 2, Andersen et al. 2012.

10. Ando, H, Williams, C, Angus, RM, Thornton, EW, Chakrabarti, B, Cousins, R, et al. Why don’t they accept non‐invasive ventilation? Insight into the interpersonal perspectives of patients with motor neuron disease. British Journal of Health Psychology 2015;20:341–59CrossRefGoogle Scholar.

11. See note 1, Miller et al. 2009.

12. Kaub-Wittemer, D, von Steinbüchel, N, Wasner, M, Laier-Groeneveld, G, Borasio, GD. Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers. Journal of Pain and Symptom Management 2003;26(3):890–6CrossRefGoogle ScholarPubMed.

13. See note 2, Andersen et al. 2012.

14. Narayanaswami, P, Bertorini, TE, Pourmand, R, Horner, LH. Long-term tracheostomy ventilation in neuromuscular diseases: Patient acceptance and quality of life. Neurorehabilitation and Neural Repair 2000;14:135–9CrossRefGoogle ScholarPubMed.

15. Tobii dynavox [Internet]; 2020 March 2; available at https://tobiidynavox.com/en-us. (last accessed 2 Mar 2020).

16. The quotes included here are from an IRB approved qualitative research study of U.S. veterans currently being conducted at the Portland VA Health Care System. A formal analysis of qualitative data from this study will be conducted separately. What we include here are select analyzed quotes from interviews which we believe are particularly powerful for highlighting the challenges of decisionmaking in ALS.

17. Ceriana, P, Surbone, S, Segagni, D, Schreiber, A, Carlucci, A. Decisionmaking for tracheostomy in amyotrophic lateral sclerosis (ALS): A retrospective study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 2017;7–8:492–7CrossRefGoogle Scholar.

18. Hogden, A, Greenfield, D, Nugus, P, Kiernan, MC. What are the roles of carers in decision-making for amyotrophic lateral sclerosis multidisciplinary care? Patient Preference and Adherence 2013;7:171–81CrossRefGoogle ScholarPubMed.

19. See note 2, Andersen et al. 2012.

20. Ho, A. Relational autonomy or undue pressure? Family’s role in medical decision-making. Scandinavian Journal of Caring Sciences 2008;22:128–35CrossRefGoogle ScholarPubMed.

21. Lindemann, H. Holding and Letting Go: The Social Practice of Personal Identities. New York, NY: Oxford University Press; 2014 CrossRefGoogle Scholar.

22. Baier, AC. Cartesian persons. Philosophia 1981;10:180 CrossRefGoogle Scholar.

23. Baylis, F. “I Am Who I Am”: On the perceived threats to personal identity from deep brain stimulation. Neuroethics 2013;6:513–26CrossRefGoogle ScholarPubMed.

24. See note 22, Baylis 2013.

25. Schechtman, M. Philosophical reflections on narrative and deep brain stimulation. Journal of Clinical Ethics 2010;21(2):133–9Google ScholarPubMed.

26. See note 22, Baylis 2013.

27. Baylis, F. The self in situ: A relational account of personal identity. In: Downie, J, Llewelyn, , eds. Being Relational: Reflections on Relational Theory and Health Law. Vancouver, BC: UBC Press; 2012, at 109–31Google Scholar.

28. See note 22, Baylis 2013.

29. Chiò, A, Logroscino, G, Hardiman, O, Swingler, R, Mitchell, D, Beghi, E, et al. Prognostic factors in ALS: A critical review. Amyotrophic Lateral Sclerosis 2009;10(5–6):310–23CrossRefGoogle ScholarPubMed.

30. Braingate [Internet]; 2020 March 2; available at at https://braingate.org. (last accessed 2 Mar 2020).

31. Daly, JJ, Huggins, JE. Brain-computer interface: current and emerging rehabilitation applications. Archives of Physical Medicine and Rehabilitation 2015;96(3):1–7 CrossRefGoogle ScholarPubMed.

32. Spataro, R, Chella, A, Allison, B, Giardina, M, Sorbello, R, Tramonte, S, et al. Reaching and grasping a glass of water by locked-in ALS patients through a BCI-controlled humanoid robot. Frontiers in Human Neuroscience 2017;11:68 CrossRefGoogle ScholarPubMed.

33. Chaudhary, U, Xia, B, Silvoni, S, Cohen, LG, Birbaumer, N. Brain-computer interface-based communication in the completely locked-in state. PLoS Biology 2017;15(1):e1002593. doi: http://dx.doi.org/10.1371/journal.pbio.1002593 CrossRefGoogle ScholarPubMed.

34. Chio, A, Gauthier, A, Calvo, A, Ghiglione, P, Mutani, R. Caregiver burden and patients’ perception of being a burden in ALS. Neurology 2005:64(10):1780–2CrossRefGoogle ScholarPubMed.

35. Goldstein, LH, Atkins, L, Landau, S, Brown, R, Leigh, PN. Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: A longitudinal study. Psychological Medicine 2006:36:865–75CrossRefGoogle ScholarPubMed.

36. Burke, T, Galvin, M, Pinto-Grau, M, Lonergan, K, Caoifa, M, Mays, I, Carney, S. Caregivers of patients with amyotrophic lateral sclerosis: investigating quality of life, caregiver burden, service engagement, and patient survival. Journal of Neurology 2017;264:898–904 CrossRefGoogle ScholarPubMed.

37. Thommessen, B, Aarsland, D, Braekhus, A, Oksengaard, AR, Engedal, K, Laake, K. The psychological burden on spouses of the elderly with stroke, dementia and Parkinson’s disease. International Journal of Geriatric Psychiatry 2002;17:78–84 CrossRefGoogle ScholarPubMed.

38. Foley, G, Timonen, V, Hariman, O. Acceptance and decision making in amyotrophic lateral sclerosis from a life-course perspective. Qualitative Health Research 2014;24(1):67–77 Google ScholarPubMed.