A qualitative exploratory study into medical, nursing and allied health professional experiences of elective withdrawal of non-invasive ventilation in a motor neurone disease cohort.

Abstract

With absence of a cure, the mainstay of management for patients with motor neurone disease (MND) is holistic supportive care and symptom control. Non-invasive ventilation (NIV) can provide relief from distressing dyspnoea which often accompanies progressive respiratory muscle weakness. Some patients using NIV will become dependent on it, with a small proportion of these patients going on to request withdrawal. Despite being legal in the UK, elective withdrawal of NIV can be emotionally and ethically challenging for the staff involved. To guide the process of symptom-controlled withdrawal, in 2015 the Association for Palliative Medicine (APM) released clinical guidance. The aim of this study is to explore the experiences of the multi-disciplinary team (MDT) involved in elective withdrawal of NIV in an MND cohort following the publication of this guidance. A qualitative, semi-structured interview study of eight NHS qualified staff members (three Doctors, four Nurses, one Allied Health Professional). Clinicians were asked questions relating to their experiences of the withdrawals. After full transcription, data was analysed thematically. Four main themes were identified, offering insight into how the withdrawals affected staff's well-being and summarised via an 'enablers and barriers' model. The setting was important, as was the depth and longevity of the clinician's investment in the patient. Positive influences on staff's well-being arose from the sense of fulfilling the patient's wishes, good teamwork, presence of an experienced clinician and awareness of the APM (2015) Guidance. Conversely, barriers to well-being were expressed through the unpredictability of each scenario, moral and ethical uncertainties, external pressures on time, mismatched expectations, poor communication and the emotional intensity of the act. Elective withdrawal is highly emotive, simultaneously positively and negatively influencing staff well-being. By addressing the potential mitigating factors, the overall impact on staff's mental health and well-being maybe improved and thus, subsequently, patient care.