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Most motor neurone disease (MND) patients die of respiratory system complications. When patients have advanced disease with symptoms of respiratory failure, management issues can become complicated by the introduction of assisted ventilatory devices. Therefore, care provision by a multidisciplinary team must be structured and co-ordinated in order to ensure that patients and their carers receive the optimal level of care. The objective of this article is to review the literature and explore the complex issues surrounding the use of non-invasive positive pressure ventilation (NIPPV) in home care MND patients as a justification for the development of a management guideline for medical practitioners. A guideline for multidisciplinary care of home ventilated MND patients will be proposed.

Despite an increased uptake of the GOC form, overall use remained low, written completion was poor, and most quantitative outcomes remained statistically unchanged. Further research is required before a wider GOC implementation can be supported in Australia's healthcare systems.

IntroductionIn partnership with Cancer Council Western Australia (WA), the East Metropolitan Health Service in Perth, WA has developed a clinical simulation training programme ‘Talking Together’ using role play scenarios with trained actors as patients/carers. The aim of the training is to improve clinicians’ communication skills when having challenging conversations with patients, or their carers, in relation to goals of care in the event of clinical deterioration.Methods and analysisA multisite, longitudinal mixed-methods study will be conducted to evaluate the impact of the communication skills training programme on patient, family/carer and clinician outcomes. Methods include online surveys and interviews. The study will assess outcomes in three areas: evaluation of the ‘Talking Together’ workshops and their effect on satisfaction, confidence and integration of best practice communication skills; quality of goals of patient care conversations from the point of view of clinicians, carers and family/carers; and investigation of the nursing/allied role in goals of patient care.Ethics and disseminationThis study has received ethical approval from the Royal Perth Hospital, St John of God and Curtin University Human Research Ethics Committees. The outputs from this project will be a series of research papers and conference presentations.

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