An increasing number of patients with motor neurone disease (MND) in the UK and Ireland are using assisted ventilation to control symptoms and prolong life. A small proportion of these are initiated on long term tracheostomy ventilation (TV). NICE guidelines dictate that MND patients should routinely receive specialist palliative care input, yet research into the management of TV MND patients in the hospice setting is limited. Objective
The aim of this study was to explore the extent to which hospices and specialist palliative care units (SPCUs) in the UK and Ireland currently manage MND patients using assisted ventilation, especially TV.
Methods A literature review was used to guide the development of an electronic questionnaire which was sent to medical directors or lead physicians in all hospices/specialist palliative care units in the United Kingdom and Republic of Ireland. the questionnaire was sent to 184 units.
Results The response rate was 41.3% (n=76). 97% units admit MND patients on non-invasive ventilation (NIV) but only 33% admit TV MND patients (n=22). However 40% of respondents indicated that community palliative care support was provided to TV MND patients. 61 respondents indicated adequate expertise in the management of NIV, while only 6 indicated adequate expertise in managing TV. While the majority of respondents (96%) indicated that Advance care planning was routinely offered to the MND patients, less than half routinely included conversations regarding ITU admission (40%) or invasive ventilation (39%). Only 11 (14%) of respondents indicated having personal experience of withdrawal of TV in MND patients.
Conclusion This study has highlighted a perceived lack of expertise in the management TV MND patients within hospices/SPCUs with less than half of units allowing admission for TV MND patients. There is a need for further research in this area.
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