Our objectives were to identify the experiences of people with MND in receiving the diagnosis and to determine which aspects of breaking this bad news were associated with greater satisfaction with the way the diagnosis was delivered to them. An anonymous postal survey was facilitated by all MND associations in Australia, in 2014, and centred on the SPIKES protocol for communicating bad news. Of the patients (n = 248, response rate 29%), 36% were dissatisfied with the delivery of the diagnosis and gave low ratings on the ability/skills of their neurologists to deliver the diagnosis. It was evident that the longer the patients spent with their neurologists during breaking such bad news, the more they were satisfied and the higher they rated the neurologists' abilities/skills. The largest significant differences between neurologists rated as having high or low skills in delivering the diagnosis were in four domains: 1) responding empathically to the feelings of patient/family; 2) sharing the information and suggesting realistic goals; 3) exploring what patient/family are expecting or hoping for; and 4) making a plan and following through. In conclusion, with over one-third of patients dissatisfied with their experience, there is room for improvement in the practice of neurologists in specified areas that could form the basis for changing practice, and the development of standards and protocols likely to have implications at the international level.
Communication of the diagnosis of MND is daunting for patients and neurologists. This study aimed to establish a knowledge base of current Australian practice of breaking the news of an MND diagnosis, to assess the neurologists' educational and training needs and to compare the feedback obtained from neurologists and patients to international practice guidelines. An anonymous survey of neurologists was undertaken in Australia (2014). 73 neurologists responded to this national survey (50.4% response rate). Nearly 70% of neurologists reported finding it "somewhat to very difficult" communicating the MND diagnosis, and 65% reported feeling moderate to high stress and anxiety at the delivery of diagnosis. Compared to international guidelines, areas for improvement include length of consultation, period of follow up and referral to MND associations. Two-thirds of neurologists were interested in further training to respond to patient's emotions and development of best practice guidelines. This is the first national study to provide a comprehensive insight into the process of delivering the MND diagnosis from the neurologists' perspective and to make comparisons with those of patients and the international guidelines. This study forms the basis for developing protocols to improve communication skills and alleviate the emotional burden associated with breaking bad news.
In this retrospective pilot study we examine the feasibility of establishing a confidential enquiry into why some patients die after emergency admission to hospital. After excluding those who died in the first hour or who were admitted for palliative care, pairs of physicians were able to collect quantitative and qualitative data on 200 consecutive deaths. Both physicians reported shortfalls of care in 14 patients and one of the pair in 25 patients whose deaths would not have been the expected outcome. In 25, the shortfalls of care may have contributed to their deaths. Major problems were delays in seeing doctors, inaccurate diagnoses, delays in investigations and initiation of treatment. They occurred mostly in those admitted at night. It is possible that establishing the correct diagnosis and starting appropriate treatment may have been delayed in 64% of the 200 patients. The headline figures appear worse than some previous external assessment studies but this study did concentrate on those in whom problems were more likely. Nevertheless, the frequency is too high to be overlooked. In this feasibility study we have demonstrated that it is practicable for local staff to collect and assess data in hospitals and that the types of problems identified are relevant to anyone planning how to organise emergency care. A larger definitive study should be performed.
Family carers have a central role in the care and support of people with MND and face the challenges of the disease from diagnosis to progression and the multiple losses of MND, but their support needs are often neglected. This study aimed to investigate the experiences of family carers at the time of diagnosis and their satisfaction with receiving the news. An anonymous postal survey was facilitated by all MND Associations in Australia (2014) and 190 family carers completed the questionnaire. The questions centred on the SPIKES protocol for communicating bad news. Two-thirds of family carers rated the skills of their neurologists as above average and were satisfied with the delivery of the diagnosis, in terms of having a significantly longer consultation time, the neurologist being warm and caring, satisfaction with the amount and content of information they received and relevant supports, and a plan for following up support. Conversely those who rated the neurologist's skills as below average commented on the difficulties they encountered and the long term emotional stress engendered by poor communication. The study emphasises previous research that suggested that neurologists may require education and training in communicating the diagnosis and this should include family carers as a vital member in MND care.
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