Healthcare professionals’ involvement in breaking bad news to newly diagnosed patients with motor neurodegenerative conditions: a qualitative study

Abstract

Purpose Research on breaking bad news (BBN) in healthcare has mostly focused on the doctor-patient interaction during a single consultation. However, it has been increasingly recognised that BBN is a wider process that also involves other healthcare professionals. This qualitative study explored non-medical1 healthcare professionals’ involvement in BBN to newly diagnosed patients with motor neurodegenerative conditions in the UK. Materials and methods 19 healthcare professionals working with people with motor neurone disease, multiple sclerosis, Parkinson’s disease or Huntington’s disease took part in individual, semi-structured interviews which were analysed using thematic analysis. Results Four themes were constructed: dealing with the diagnostic aftermath, unpacking the diagnosis, breaking bad news as a balancing act and empowering patients to regain control over their health and lives. Participants reported being broadly involved in BBN by supporting patients with negative diagnostic experiences, re-iterating diagnostic information and helping patients understand the impact of their condition. The challenges of effectively breaking bad news and how these difficult conversations could help empower patients were also emphasised. Conclusions BBN was a critical and challenging aspect of healthcare professionals’ clinical work with newly diagnosed patients with motor neurodegenerative conditions. Besides providing information, BBN was perceived as a way to educate patients, encourage them to make decisions and prepare for the future. Implications for rehabilitation Breaking bad news is a potentially under-recognised but significant aspect in the neurorehabilitation of neurodegenerative conditions. Listening to patients’ stories about a long and occasionally unsatisfactory diagnostic journey and allowing them to express their frustration can be critical in regaining patients’ trust and building a relationship with them. Newly diagnosed patients have not always received adequate information about their condition at diagnosis or they might have not understood or retained that information. It is, therefore, essential that patients’ understanding of their condition is assessed, misconceptions are cleared and appropriate information about the nature and impact of the diagnosis is provided. Irrespective of the length of experience, breaking bad news was perceived as a multi-faceted, challenging, stressful and emotionally demanding task. Formal support and specialised training on breaking the bad news that addresses the incurable, unpredictable and progressive nature of motor neurodegenerative conditions could help professionals with this challenging task.