• Kate Flemming, Victoria Turner, Samantha Bolsher, Bill Hulme, Elizabeth McHugh, and Ian Watt.
• Department of Health Sciences, Faculty of Science, University of York, York, UK.
• Palliat Med. 2020 Jun 1; 34 (6): 708730708-730.

BackgroundDespite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services.AimTo explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory.DesignA systematic review of qualitative research conducted using Thematic Synthesis - PROSPERO registration CRD42017075311.Data SourcesFour electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality.ResultsA total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients' and carers' experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement.ConclusionThe review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change.

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