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Palliative Care in Amyotrophic Lateral SclerosisFrom diagnosis to bereavement, 2nd Edn$
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David Oliver, Gian Domenico Borasio, and Declan Walsh

Print publication date: 2006

Print ISBN-13: 9780199212934

Published to Oxford Scholarship Online: November 2011

DOI: 10.1093/acprof:oso/9780199212934.001.0001

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Decision Making

Decision Making

(p.43) Chapter 3b Decision Making
Palliative Care in Amyotrophic Lateral Sclerosis

Wendy Johnston

Oxford University Press

This chapter discusses the decision-making integral to ALS patients and their families. Diagnosis and the quality of life have steadily improved for ALS patients with the advent of improved nutrition, respiratory support, and the riluzole. However, amidst these developments, treatments face certain limitations and the daunting task of making decisions on accepting or forgoing life-sustaining therapies will inevitably be made. These decisions include requests for assisted suicide or euthanasia, and advance care planning. In the course of decision-making, several factors affecting decisions and their implementation such as the social and spiritual context of each individual, the family, the medical community including financial resources often come into play. The cognitive deficits and the depression of ALS patients also affect decision-making related to end-of-the-life care. Discussion of end-of-life issues is often combined with ethical dilemmas and difficult choices where conflict is never distant resulting to avoidance of clinicians to openly discuss advance life planning however, open discussion of end-of-life issues is integral as it helps ALS patients and their families to achieve quality life and to prepare for the inevitable end. Informing and guiding patients and their families in the decision-making process to a peaceful death should be integral to medical practice.

Keywords:   decision-making, decisions, assisted suicide, euthanasia, advance care planning, cognitive deficits, depression, end-of-the-life care, discussion, ethical dilemma

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