VentMND: exploring end of life decisions around use of ventilation

Understanding end of life decision making of patients with MND using home mechanical ventilation 

This study will explore patient and family experiences of making decisions about using ventilation at the end of life. Over time, patients with MND 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.

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. This will be valuable information that can be applied to other conditions where ventilation is used.

Interviews with patients, family members and bereaved family members will be carried out so that they can share their experiences. In a second study phase, health professionals, commissioners, and patients and families will be brought together 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.

What does taking part involve?

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 (e.g. email).

If, in the future in-person contact becomes possible, the researcher would be happy to visit and speak to you at home, if you prefer.

If additional child or home care is needed in order to participate in the study this can be paid for.

Study location

UK-wide (remote)

Who can take part?

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

At this time all participants need to be able and willing to communicate remotely and must be over 18 years old.

How can I take part?

For further information, please contact Dr Eleanor Wilson - eleanor.wilson@nottingham.ac.uk or 07971 036520.

For more information, please visit the University of Nottingham website.

Funding

University of Nottingham Fellowship Award.