Healthcare professionals' perspectives on breaking bad news for motor neurodegenerative conditions : A mixed-methods thesis

Anestis, Eleftherios and Simpson, Jane and Eccles, Fiona and Fletcher, Ian (2021) Healthcare professionals' perspectives on breaking bad news for motor neurodegenerative conditions : A mixed-methods thesis. PhD thesis, Lancaster University.

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Abstract

Breaking bad news in a medical context, such as the delivery of a diagnosis, is usually a distressing experience both for the bearer and the receiver. Although this experience can sometimes take only few minutes, research has shown that how a diagnosis is communicated can have a long-term impact on individuals’ understanding and management of their condition. Most studies on this topic have been conducted from the patients’ perspective and in the field of oncology, where bad news is often associated with a life-threatening disease and intensive treatments. However, how bad news is broken can be a critical issue for other conditions that are not curable and for which treatment options are limited, such as motor neurodegenerative diseases (MNDDs). Although these conditions are relatively common and can affect individuals’ physical and cognitive functioning, studies regarding delivering such diagnoses especially from the professionals’ perspectives are limited. The aim of the present alternative format PhD thesis was to investigate professionals’ practice and experiences of communicating the diagnosis for four MNDDs: Parkinson’s disease, motor neurone disease, Huntington’s disease and multiple sclerosis. For this purpose, a mixed-methods approach was employed, and a series of interconnected studies was conducted. Initially, a scoping review of quantitative and qualitative studies of patients’ and doctors’ perspectives on breaking bad news for MNDDs was completed in order to establish pre-existing knowledge and research gaps on the topic. A survey study then assessed UK neurologists’ practice in breaking bad news for these conditions and identified important aspects of the consultation that required further research. Two qualitative studies were then conducted. A thematic analysis study was completed to establish non-medical healthcare professionals’ involvement in breaking bad news to newly diagnosed patients with MNDDs and an interpretative phenomenological analysis study aimed at exploring neurologists’ lived experiences of delivering these diagnoses was then conducted. Findings from the scoping review indicated that a significant proportion of patients were dissatisfied with aspects of their diagnosis delivery consultation, mainly the time dedicated for these appointments, the amount of information that was provided and doctors’ manner which was often characterised by a lack of empathy. The review also revealed a research gap on studies on doctors’ views, especially from a qualitative perspective. The empirical studies of the thesis that focussed on neurologists’ perspectives showed that, overall, professionals achieved high standards of practice, especially in terms of acknowledging the critical importance of the task and providing an appropriate environment for these consultations. However, professionals’ intention to provide a patient-centred consultation was often compromised by organisational restrictions such as a heavy workload and limited time slots. Participants discussed the challenges of providing tailored information, attempting to minimise patients’ distress and discuss the uncertainties surrounding the course and prognosis of MNDDs. Neurologists were also challenged by the emotional impact of delivering these diagnoses and witnessing patients’ often intense emotional reactions. Being the bearer of bad news often elicited feelings of guilt, sorrow and powerlessness due to the incurable nature of MNDDs as well as fears regarding participants’ own mortality and the unpredictability of life. The thematic analysis study highlighted non-medical healthcare professionals’ significant involvement in breaking bad news to newly diagnosed patients with MNDDs. Participants reported having a significant role in helping patients understand their diagnosis and its impact on different aspects of their lives but also in providing emotional support and helping patients regain a sense of control and maintain a positive outlook. The findings of the thesis suggest that professionals in the UK did not follow any specific guidelines for breaking bad news, did not receive any formal source of support despite the emotional burden associated with the task, and had often received little to no training focussing on breaking bad news for these conditions. The implications of these findings for clinical practice and organisational change are discussed and suggestions for future research on the topic are provided.