Experiences of people with motor neurone disease receiving the news of the diagnosis: a national survey

Communicating the diagnosis of motor neurone disease (MND)is challenging for both neurologists and patients. The manner the patient is imparted the diagnosis is acknowledged to be the first and one of the most sensitive steps in palliative care. The aims of this study were to identify the experiences of people with MND in receiving the diagnosis and to determine which aspects of the process of breaking the news were associated with greater satisfaction. Method consisted of an anonymous postal survey facilitated by all MND associations in Australia. Results provided a comprehensive insight from the patients' perspective (n=248, response rate 29%): 36% were dissatisfied with the delivery of the diagnosis and gave lower ratings on the ability/skills of their neurologists. It was evident that the longer the patients spent with their neurologists during breaking such bad news, the more they were satisfied with the delivery process and the higher they rated the neurologists' ability/skills. The largest significant differences in performance between the two groups of neurologists (with low and high ratings of skills) were in four domains: Responding empathically to the feelings of patient/family; sharing the information and suggesting realistic goals; exploring what patient/family are expecting or hoping for; making a plan and follow through. There is room for improvement in the practice of neurologists in Australia in several aspects, which would be fit for the future for better palliative care.