Dr. Eleanor Wilson will explore patients’ and family members’ experiences of end-of-life decisions about continuing or withdrawing mechanical ventilation in Motor Neurone Disease (MND).
Eleanor will be undertaking a research study to explore patient and family experiences of making decisions about using ventilation at the end of life. Motor Neurone Disease (MND) causes muscles to gradually weaken. Over time, patients lose their ability to move, speak and breathe. Ventilation, using a close-fitting mask (Non-invasive ventilation: NIV) or tube in the neck (tracheostomy/invasive ventilation: TV) can help support breathing. As their condition worsens, patients use ventilation for longer until they cannot breathe without it. They then wish to decide whether, or not, they want to keep using ventilation. Stopping, or withdrawing, ventilation at this stage means the patient would quickly die.
We know that withdrawing ventilation is stressful and challenging for health professionals, but we do not know what patients or family members think about this, how they make decisions about staying on or stopping ventilation, what their concerns might be or what the longer-term impact is for families when the patient dies. We think this will be valuable information that can be applied to other conditions where ventilation is used.
We will carry out interviews with patients (approx. 20), family members (approx. 20) and bereaved family members (approx. 35) so that they can share their experiences. In a second study phase, we will bring together health professionals, commissioners, and patients and families to review the findings and suggest how they might inform practice and guidance. Discussions at these workshops will inform a short, accessible online video to help future patients, families, and health professionals to talk about ventilation.
Posted on Tuesday 26th January 2021