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“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
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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

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Footnotes

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

References

Notes

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