Amyotrophic lateral sclerosis (ALS) remains an incurable and ultimately fatal condition that frequently involves a heavy symptom load during the terminal phase. Relatively little is currently known regarding nurses’ lived experiences in this setting. To investigate the experiences of nurses who provide care to individuals with ALS during the end-of-life period. Semi-structured individual interviews were carried out between February and August 2022 with nurses practicing in Quebec, Canada. All participants had cared for at least one person with ALS at the end of life within the previous 12 months. Data were examined using content analysis, including within-case and cross-case analyses, as well as comparative analyses based on the participants’ practice setting that defined the cases: (1) home care, (2) hospital, and (3) palliative care home.
A total of 24 nurses took part in the study: 9 worked in home care, 8 in hospitals, and 7 in palliative care homes. Five primary themes emerged: (1) recognizing the end-of-life phase, (2) communication challenges, (3) supporting the desire for control, (4) accompanying patients within a culture of fighting the disease, and (5) the degree of care required. A sixth theme was incorporated to capture the nurses’ expressed need to enhance the care they provide to patients living with ALS at the end of life. Although the nurses’ experiences differed depending on the care setting, the findings highlight an urgent requirement for improved education and, most importantly, greater resources when supporting a person with ALS at the end of life. Future studies should examine the perspectives of other healthcare professionals and evaluate interventions aimed at enhancing the quality of life and end-of-life care for individuals living with ALS.
