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Identifying the changing needs of patients and their carers and empowering them in decision making through advance care planning.

Motor Neurone Disease (MND) is a fatal neurodegenerative disease that requires special care at the end of life, particularly because disability is relentlessly progressive and death generally occurs in a predictable fashion. In the absence of a cure, optimal management requires a palliative approach aimed at preserving and/or improving the quality of life through palliation of physical, psychosocial and existential distress. With disease progression, identification of care needs and issues relating to end-of-life care (EOLC) decision making is crucial to avoid unwanted interventions and facilitate delivery of holistic and personalised care. However, the frequent and related development of frontotemporal dementia (FTD) has the potential to diminish patients’ decision making abilities. Nevertheless, honouring care preferences and patient’s choice for preferred place of death (PPD), a central aspect of the government’s ‘End of Life Care Strategy’, is important and this can be achieved through advance care planning (ACP). Despite awareness that patients with MND have distressing symptom burden and specific palliative care needs, there is very little research to guide ACP, facilitate seamless integration of palliative care into management and empower patients in EOLC decision making.