The care of patients with MND has changed radically with greater uptake of non-invasive ventilation (NIV) and tube feeding (TF). Community colleagues in our region have expressed anxiety about how such supported patients might die and in particular whether the process of dying might be prolonged. We sought to investigate these concerns.Methods
A structured questionnaire was distributed to involved clinicians, community practitioners and MNDA care co-ordinators. They completed questionnaires for patients dying under their care, where necessary/appropriate with the input of family members. The data are compared with an historical, retrospective series (n=50) reported by the Wisdom Hospice (WH).1Results
From October 2010 to June 2011, 51 deaths were recorded (mean age 67 years, 29 men). Thirty deaths were in an acute hospital, 15 at home, six in a hospice or community hospital. 16 patients had advance care plans (ACP) of whom 10 died in their “preferred place”. Assisted ventilation had been prescribed to 30 and tube feeding to 37 patients. NIV and TF were discontinued before death in 13 and five patients respectively. For 22 patients the process of dying was sudden or <24 h in duration. NIV was not associated with a prolonged process of dying. The commonest certified cause of death was an unqualified “MND”, with pneumonia reported in seven cases. No patient had a post mortem examination. The WH cohort had a similar proportion of men and the mean age at death was 66 years. None of the patients had assisted ventilation and only seven had tube feeding. The process of dying was 24 h or less for 24 patients. The commonest recorded cause of death was respiratory failure (22 individuals).Conclusion
These preliminary results show that there is no trend to prolonged deaths in patients with MND using NIV and TF. Several patients have elected to discontinue NIV. ACP's in our region remain patchy and require further attention. The quality of death certification is poor with little detail on the mechanism of death.