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Abstract

This narrative review examines connections between neurology, specialist palliative care, andan integrated palliative approach to care for people living with neurodegenerative conditions.To illustrate the complexities of including palliative care in the management of neurodegenerativeconditions, amyotrophic lateral sclerosis (ALS) is used as a case study. Challenges to co-ordinatedALS care and smooth care transitions between multiple services and healthcare professionals arediscussed, including the timing of palliative care delivery in ALS; the education and training needsof healthcare professionals; and misperceptions of palliative care held by healthcare professionals,patients, and families. The benefits of adopting an integrated palliative approach to care forpatients, families, and healthcare professionals are clarified. To enhance this, a family perspectiveis given on experiences of ALS neurology and palliative services, the challenges they faced, and aspects of care that facilitated the patient’s preferences for the time they had left. This reviewconcludes that a palliative approach integrated into the care plan of people with ALS from the timeof diagnosis can optimise quality of life by relieving symptoms; providing emotional, psychological,and spiritual support pre-bereavement; minimising barriers to a comfortable end of life; andsupporting the family post-bereavement. These outcomes can only be achieved if palliative careknowledge and expertise are extended beyond the domain of specialist palliative care services toinclude the full scope of health and community-based care. These challenges and potential actionsare common for several neurodegenerative pathologies, and recommendations are made forenhancing the training of neurology health professionals within the wider community.

Item Type:	Article
Authors/Creators:	Hogden, A and Aoun, SM and Silbert, PL
Keywords:	integrated care, interdisciplinary care
Journal or Publication Title:	European Medical Journal
Publisher:	European Medical Journal
ISSN:	0963-6056
Copyright Information:	Copyright © 2019 European Medical Group LTD trading as European Medical Journal. Licensed under Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) https://creativecommons.org/licenses/by-nc/4.0/
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