Exploring end of life decision making with patients with Motor Neurone Disease (MND) using home mechanical ventilation: The perspectives of people with MND and families. (VentMND)

This study will 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. 

For example, we want to understand:

• decisions about the use of home ventilation (such as NIV, Nippy, tracheostomy) for MND
• how these decisions were made including how people can be supported by professionals and how they might share this information with those involved in your care
• thoughts about discussions and decisions to stop or continue using ventilation at the end of life

The information will help understanding of peoples’ use of home ventilation towards the end of life. This will help to improve the care and support provided in future by health and social care professionals.

The study involves taking part in an interview. This can be as a one off event taking approximately 1 hour or several shorter chats, to suit you. This can take place over the phone, a video chat (such as Teams or Skype) or via written exchanges (eg email). If, in the future in-person contact becomes I may be able to visit and speak to you at home, if you prefer.

We are looking for three types of people to take part:

1) People with MND who are dependent on home mechanical ventilation for survival and to alleviate the symptoms of respiratory failure caused by MND

Download the information sheet here

2) Current family members of a person with MND who is dependent on home mechanical ventilation for survival and to alleviate the symptoms of respiratory failure caused by MND

Download the information sheet here

3) Bereaved family members whose relative died after choosing to withdraw ventilation on which they were dependent, or whose relative died with ventilation in place. Bereavement to have taken place since 31st December 2015 and at least 8 weeks prior to study involvement.

Download the information sheet here

Wilson, E., Lee, J-S, Wenzel, D and Faull C (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(9): p. 1162.

Marie Curie Research Conference (Feb 2023) - Shifted deaths: the use of home mechanical ventilation for Motor Neurone Disease (MND).