Ventilation in motor neuron disease: difficult decisions in difficult circumstances

The care of people with MND/ALS can raise difficult ethical dilemmas. The ventilatory support of patients may involve difficult decisions and complex discussions, to allow patients and their families and carers to make truly autonomous decisions. A case is presented of a patient who asked for invasive ventilation to be withdrawn and the problems for all involved--patient, family and professionals--are explored. The need for careful forward planning and discussion is emphasised so that decisions can be made after careful consideration and not in an emergency situation.