Who will benefit from tracheostomy ventilation in motor neuron disease?
- Correspondence to Dr John M Shneerson, Respiratory Support & Sleep Centre, Papworth Hospital, Papworth Everard, Cambridge CB23 3RE, UK;
- Asthma guidelines
- cystic fibrosis
- exhaled airway markers
- lung physiology, paediatric asthma, paediatric lung disease
The decision when to recommend tracheostomy ventilation in motor neuron disease (amyotrophic lateral sclerosis) has always been difficult. At one extreme is the view that when spontaneous ventilation or non-invasive ventilation is inadequate, a tracheostomy will save the patient's life and lead to prolonged survival. This view has been more widely held in the USA than elsewhere. In the UK, a common position is the opposite, with a nihilistic attitude towards invasive respiratory treatment. The rationale behind this is that it is too intrusive, both for the patient and for the family and carers, and that once a tracheostomy is needed, palliative care is more appropriate.
Not surprisingly, there has been a wide geographical variation in the proportion of patients who proceed to a tracheostomy, and the review by Sancho et al1 is timely. The authors describe a 9-year experience in a specialist respiratory care unit where the issues surrounding tracheostomy ventilation were openly discussed with each patient who might benefit from it. Out of 76 subjects 38 refused. Unfortunately, no further data are provided about these patients to compare their outcomes in terms of quality of life with the 38 who underwent a tracheostomy but their mean survival was only 0.83 months.
Interestingly, over half of those …