Exploring MND experiences
Exploring the experiences of families and health professionals supporting a patient with Motor Neurone Disease (MND) who requests that their ventilation be withdrawn
Motor neurone disease (MND) is a progressive neurological condition which affects the function of skeletal muscle, over time affecting respiratory muscles and most deaths in MND are due to respiratory failure. Some patients with MND choose to use non-invasive ventilation (NIV) to improve their quality of life but neurological deterioration is relentless for patients and if nothing else happens, patients will eventually reach a point at which they cannot move or communicate and are kept alive in a so-called ‘locked in’ state.
Some patients who become very dependent on NIV, will wish to stop it because they can no longer tolerate it or because of deterioration in other factors in their quality of life. Some will have made a written statement with respect to withdrawal in advance of their losing the ability to communicate (locked in state). For those patients who use NIV most of the time the removal of NIV leads to a rapid onset of distressing symptoms. Medication is needed to manage the physical distress resulting from NIV withdrawal. The removal of NIV will usually be followed by death within hours.
The recent UK NICE guidance identifies the lack of evidence on providing information to family and patients using NIV in relation to end of life care. The guidance also states that more research is needed on the withdrawal of NIV. In this work we are exploring, from the perspective of the health professional and close family carer the issues related to withdrawal of ventilation at the request of a patient with MND.
What can we learn and improve about discussions on ventilation withdrawal, the preparation required to address patient choice and safety, the actual event of withdrawing of ventilation, and the care after the patient has died.
To explore the impact the withdrawal of ventilation has on professionals and close family carers and how any adverse consequences can be minimised.
January 2012 - August 2014
LOROS & Motor Neurone Disease Association
Professor Christina Faull (PI), LOROS
Kay Phelps, University of Leicester
Emma Regen, University of Sheffield
Dr Chris McDermott, University of Sheffield
Dr David Oliver, Wisdom Hospice & University of Kent
Dr Cassy Rowe-Haynes, Wisdom Hospice & University of Kent
Idaliza Garner, LOROS
The experiences of all participants identified that this is a very challenging part of the journey of care for a person with MND. We were able to identify examples of where things had gone well and also examples of where outcomes were not satisfactory. The summary of the project and the recommendations that result from it can be found in the Recommendations arising from findings. These recommendations contain frank unedited views of the research participants and focus on specific details around issues related to withdrawal of ventilation at the request of a patient with MND. One key recommendation was the development of guidance for professionals (see below)
Outcomes and Publications
The findings of this work have lead to National Guidance for professionals published by the Association for Palliative Medicine of Great Britain and Ireland in November 2015.
There is a multi professional group continuing to collate information about withdrawal of ventilation to make further recommendations for the care of patients and their families. Please contact Professor Faull for more information.
The work has been presented at UK and international meetings.
26th International Symposium on ALS/MND, Orlando, 2015: The development of guidance for professionals in the UK for the withdrawal of assisted ventilation at the request of a patient with MND.
25th International Symposium on ALS/MND, Brussels, 2014.
10th Palliative Care Congress, Harrogate International Centre, 2014.
24th International Symposium on ALS/MND, Milan, 2013: Withdrawal of NIV at the Patient’s Request: Exploration of the Issues Related to Communication, a video of Professor Faull's talk.
23rd International Symposium on ALS/MND, Chicago, 2012: Withdrawing Non-invasive Ventilation (NIV) At The Request Of A Patient With MND: The Experiences Of Doctors In The UK.
Phelps, K., Regen, E., Oliver, D., McDermott, C. and Faull, C. (2015).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, pp.bmjspcare-2014-000826.
Faull, C., Rowe Haynes, C. and Oliver, D. (2013).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, 4(1), pp.43-49.
OLIVER, D. FAULL, C. (2013) Non-invasive ventilation in amyotrophic lateral sclerosis/motor neurone disease. Minerva Pneumologica, March; 52(1):p.27-38
Faull C, Rowe-Haynes C, Phelps K, Regen E, Oliver D, McDermott C. 2012. Withdrawal of Ventilation at the Request of a Patient with Motor Neurone Disease. A Retrospective Exploration of the Experience of Doctors, Non-Medical Health Professionals and Close Family.