Introduction and Methods There is evidence that ventilatory support and feeding improve quality of life in motor neurone disease (MND). However, there are few data on whether these interventions might prolong the dying process. In order to address this we generated a standard form and prospectively collected data between October 2010 and December 2011 on the deaths of patients with MND across the East of England.
Results Data were available for 67 patients. Sixty per cent of patients had ventilatory support, mainly non invasive ventilation (NIV), available up to the point of death. Of these, most (70%), stopped it before death. Similarly 60% of patients had feeding tubes and in half of these feeding was stopped before death. In 60% of patients death was either sudden or within 48 h of first indication. From the whole group 55% did not have advanced care plans and of those that did, only 65% died where they had wanted. Half of the death certificates did not explain how death had occurred but simply recorded ‘MND’.
Conclusions These data suggest that supportive management of MND with NIV and feeding does not necessarily prolong the process of dying. NIV in particular is frequently discontinued in patients approaching death. Many patients had no recorded end of life planning. For those with a ‘preferred place of death’ this was where the patient died in only a third of cases; although individuals may have changed their minds when death was imminent. Improved documentation of patients' wishes and specific modes of dying may benefit the management of future patients with MND.