Our research is breaking new ground in understanding the experiences of health professionals caring for people who use ventilation through a face mask who die with COVID or other lung diseases.
We talked with 21 nurses, doctors and physiotherapists who described the provision of ventilation on hospital wards to critically unwell COVID-19 patients as extremely challenging. The main themes were of feeling ill prepared and unsupported, a need to balance complex moral actions and a sense of duty to patients and their families. The impact on staff was profound and findings are discussed via a lens of moral injury. Injurious events included staff feeling they had acted in a way that caused harm, failed to prevent harm or had been let down by seniors or the Trust. Participants identified factors that mitigated adverse impact.
Experience, debriefing and breaks from COVID-19 wards were valuable to participants and successfully achieving a peaceful death for the patient was often viewed as compensation for a difficult journey. These protective factors may provide modelling for future education and support services to help prevent moral injury to staff or aide in its recovery.
Wenzel D, Bleazard L, Wilson E, Faull C. Impact on staff of providing non-invasive advanced respiratory support during the COVID-19 pandemic: a qualitative study in an acute hospital
BMJ Open 2022;12:e060674. doi: 10.1136/bmjopen-2021-060674
Wenzel D, Bleazard L, Pepper CJ, Wilson E, Faull C. Non-invasive advanced respiratory support in end-of-life care and symptom management: systematic review
BMJ Supportive & Palliative Care 2022. doi: 10.1136/spcare-2022-003905
Motor neurone disease (MND) is a progressive neurological condition which affects the function of muscles, over time affecting the muscles that are used for breathing and most people with MND eventually die due to respiratory failure. Some patients with MND choose to use non-invasive ventilation (NIV) to improve their quality and length of life.
We are working closely with Dr Ellie Wilson at the University of Nottingham to explore the experiences of patients who use ventilation, their families and health professionals supporting them. Our work also focuses on decision-making about the end-of-life and to understand the lived experience of tracheostomy ventilation.
Wilson, Eleanor, Jeong-Su Lee, David Wenzel, and Christina Faull. 2022. "The Use of Mechanical Ventilation Support at the End of Life in Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A Scoping Review" Brain Sciences 12, no. 9: 1162.
Turner MR, Faull C, McDermott CJ, Nickol AH, Palmer J, Talbot K. Tracheostomy in motor neurone disease. Pract Neurol. 2019; 19:467-475. doi: 10.1136/practneurol-2018-002109.
Despite using ventilation, deterioration in muscle strength is relentless for patients with MND and if nothing else happens, patients will eventually reach a point at which they cannot move or communicate. The UK NICE guidance identified the lack of evidence on providing information to family and patients using ventilation in relation to end-of-life care and our research has acted on this.
The findings of our work exploring experiences of withdrawal of ventilation have led to National Guidance for professionals published by the Association for Palliative Medicine of Great Britain and Ireland in November 2015 and provided information to the MND Association to guide patients and families in these difficult choices.
We are continuing to collate information from professioanls who undertake the withdrawal of ventilation at the request of a patient with MND so that we can make further recommendations for the care of patients and their families. Please contact Professor Faull for more information. research@loros.co.uk
Faull C, Oliver D. Withdrawal of ventilation at the request of a patient with motor neurone disease: guidance for professionals
BMJ Supportive & Palliative Care 2016;6:144-146 DOI: 10.1136/bmjspcare-2016-001139
Faull C, Wenzel D. Mechanical ventilation withdrawal in motor neuron disease: an evaluation of practice. BMJ Supportive & Palliative Care 2020;. doi:10.1136/ bmjspcare-2019-002170
K. Phelps, E. Regen, C.J. McDermott, D.J. Oliver, C. Faull. Withdrawal of Assisted Ventilation at the Patient’s Request in MND/ALS: A Retrospective Exploration of the Ethical and Legal Issues Concerning Relatives, Nurses and Allied Health Care Professional. medRxiv 2022.03.14.22271768 (pre print)
DOI:10.1101/2022.03.14.22271768
Phelps, K., Regen, E., Oliver, D., McDermott, C. and Faull, C. Withdrawal of ventilation at the patient's request in MND: a retrospective exploration of the ethical and legal issues that have arisen for doctors in the UK. BMJ Supportive & Palliative Care, 2017: 7;189-196 DOI: 10.1136/bmjspcare-2014-000826
Faull, C., Rowe Haynes, C. and Oliver, D. Issues for palliative medicine doctors surrounding the withdrawal of non-invasive ventilation at the request of a patient with motor neurone disease: a scoping study. BMJ Supportive & Palliative Care 2013 4;43-49. DOI: 10.1136/bmjspcare-2013-000470
