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Elucidating the End-of-Life Experience of Persons With Amyotrophic Lateral Sclerosis

Long, Rachel; Havics, Brianna; Zembillas, Maria; Kelly, Joannah; Amundson, Mia

doi: 10.1097/HNP.0000000000000301

Amyotrophic lateral sclerosis (ALS) is a fatal motor neuron disease that occurs in 4 among 100 000 people in the United States. Individuals with ALS gradually lose their ability to control voluntary muscles, diminishing their ability to communicate. A comprehensive multidatabase search retrieved 31 qualitative research articles that addressed persons with end-of-life experiences with ALS. Inclusion/exclusion criteria were applied and a critical appraisal was applied for the final 8 included articles. First-person data extraction from the final articles represented emergence of 3 themes significant to persons with ALS: decisions for life-sustaining support, coping and fear of what is to come, and communication with providers. Tracheostomy and ventilation as a means of prolonging life were important considerations for individuals with ALS. Persons with ALS struggled emotionally with their sudden loss of control and facing their demise. Some facets in which they did exert control, such as living wills, were hindered by patient and health care provider communication. Effective communication in end-of-life circumstances is paramount to preserving patient autonomy and dignity. This can be achieved by the patients conveying their preferences with respect to end-of-life care in advance, as well the nurses and other health care providers supporting the patients emotionally as they cope with terminal illness. Understanding patients' views regarding end-of-life circumstances is pertinent to nurses and other health care providers as they plan for palliative care.

Indiana University–Purdue University Indianapolis.

Correspondence: Rachel Long, Indiana University Purdue University at Indianapolis, IN 46202 (

The authors have disclosed that they have no significant relationships with, or financial interest in, any commercial companies pertaining to this article.

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