Palliative and End-of-Life Care for People Living with Motor Neurone Disease: Ongoing Challenges and Necessity for Shifting Directions

作者：Vivek C. Velaga, Angus Cook, Kirsten Auret, Thomas M. Jenkins, Geoff Thomas, Samar Aoun · 发表于：Brain Sciences · 年份：2023 · DOI：10.3390/brainsci13060920 · 被引用次数：12 · 研究领域：Palliative Care and End-of-Life Issues、Amyotrophic Lateral Sclerosis Research、Family Support in Illness

Although the progressive clinical trajectory of motor neurone disease (MND) is widely understood, multiple challenges remain preventing optimal end-of-life care for this population with unique needs from the patient, carer and service provider perspectives. This paper reports on the experiences, gaps in service and unmet needs of MND patients and family carers and explores public health palliative care approaches that would facilitate coordinated and integrated care to respond to their changing needs. This is a qualitative study of responses to questions in an online consumer survey (353 respondents) in Western Australia (2020), focusing on a subset of 29 current and bereaved carers of people with MND who have used health services in the last five years. The analysis identified themes, highlighting the insufficient integration of services across health and social care; poor and unequal access to coordinated palliative care; significant gaps in the knowledge base of the workforce and a failure to meet the consumer expectations of person-centred care. For palliative care to be accessible to those living with MND and other under-served conditions, there needs to be a shift to more comprehensive, inclusive and sustainable options, such as the public health approach to palliative/end-of-life care that engages the assets of local communities in partnership with health services, one example being the "Compassionate Communities Connectors" model of care. Further considerations includ...