Background and Aims:

Patients with MND often develop respiratory muscle weakness. Once diaphragmatic muscle weakness is present, sudden deterioration and death can occur in a highly unpredictable way, often leading to crisis hospital admission.

Access to specialist respiratory physiotherapy for support with airway clearance and non invasive ventilation in normal place of residence can avoid the need for hospital admission. This paper reports place of death outcomes across a rural region in the East of England with access to an outreach specialist respiratory physiotherapist.

Methods:

Place of death data was collected over a 30 month period, alongside referral and activity data. Results were compared against reported data of regional averages for all deaths, alongside reported place of death data for people with MND elsewhere in the UK.

Results:

There were 123 deaths in the reporting period. 95 of these patients received at least one home assessment by the outreach service. 23 deaths were excluded from analysis as place of death data not available. Only 27% of patients died in a hospital, compared to regional average of 47% for all conditions and reported figures of 59% for patients with MND elsewhere in the region. 47% of patients died in their normal place of residence. Outreach intervention was estimated to have avoided hospital admission in 83% of cases.

Conclusions:

Specialist outreach respiratory physiotherapy has a role in supporting patients with Motor Neurone Disease to avoid hospital admissions towards the end of life and in enabling people with MND to die at home.