Abstract
MND is a neurodegenerative disease leading to progressive limb, bulbar and respiratory muscle weakness and ultimately death. NICE guidance recommends a multi-disciplinary approach with regular respiratory function monitoring, consideration of non-invasive ventilation (NIV) and advance planning. The Medway Clinical MND team works with the Wisdom Hospice and cares for 25-30 patients at any one time. There is a joint palliative care and respiratory clinic to review patients' NIV requirements.
Case notes from 23 deceased patients were reviewed. MND presentation, lung function testing, NIV and advance care planning were audited.
Cohort was 56% male, average age 66 years. 18 presented with limb symptoms, 3 speech issues and 2 with respiratory impairment. All patients had Sniff Nasal Inspiratory Pressure and oximetry recorded. 16 patients (70%) underwent lung function testing, 6 being commenced and continued on NIV. All patients were started at home with Specialist Nurse input. All patients commenced on NIV had end of life discussions. 65% patients died at home, 13% in hospital and 22% in the hospice. 87% died in their preferred place of death. This compares favourably to a UK-wide survey by O'Neill CL et al. J Neurol Neurosurg Psychiatry 2012;83:371-6 in which 73% NIV referrals were established on treatment and 75% had palliative care involvement (100% at Medway).
A MDT approach involving respiratory medicine, palliative care and community physiotherapy ensures MND sufferers can discuss NIV and end of life care. NICE MND guidance is being followed at this centre with regular assessment for respiratory failure. End of life issues and possible withdrawal were appropriately discussed.
- Copyright ©ERS 2015