VentMND: exploring end of life decisions around use of ventilation

[Admin_MND]

This interview study is exploring patient and family experiences of making decisions about using ventilation at the end of life. Ventilation, using a close-fitting mask (Non-invasive ventilation: NIV) or tube in the neck (tracheostomy/invasive ventilation: TV) can help support breathing. As a patient’s condition worsens, they use ventilation for longer until they cannot breathe without it.

Withdrawing ventilation is stressful and challenging for health professionals but it is unclear 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.
Interviews with patients, family members and bereaved family members will be conducted so that they can share their experiences. In a second study phase, the study 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.

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).

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

How can I take part?

Please contact Dr Eleanor Wilson - [email protected] or 07971 036520.

For more information, please visit our website: https://www.mndassociation.org/research/get-involved-in-research/take-part-in-research/ventmnd

[matthew55]

Well I have made the decision to not use my home NIV as I do not consider my current quality of life to be sufficient for my needs. I'll tell Elenore the same. 👍

[Mary C]

I will certainly read the research if it’s available before I need to make a decision to have a NIV or not.
I have been thinking about it but need to be more informed and will discuss with respiratory consultant in a few weeks.
Best wishes
Mary

[ElliWilson]

Well I have made the decision to not use my home NIV as I do not consider my current quality of life to be sufficient for my needs. I'll tell Elenore the same. 👍

Thank you for taking the time to read about the study. Having these options is so important and something we want to explore in the study. It is not quite clear from your comment, but if you think you might be suitable and you are interested in the study please do get in touch.

[ElliWilson]

I will certainly read the research if it’s available before I need to make a decision to have a NIV or not.
I have been thinking about it but need to be more informed and will discuss with respiratory consultant in a few weeks.
Best wishes
Mary

Hi Mary, thank you for taking the time to read about the study and comment. We will be making findings available via the MNDA as and when we can over the next few years. The study aims to explore these issues from a range of different perspectives and I hope, will contribute to informing patients, families and clinicians.

[Heather R]

This sounds a very valuable study, I wish the video was available now, being near the point of having to decide about NIV. I was assuming that taking it might at least temporarily help with quality of life in making you less tired and more energy, and I am assuming that stopping it when dependant is a quicker and better way to go than letting your breathing deteriorate without help. But maybe I am wrong about this, and would love to know the experience of others.

[Ellie]

Heather R You might find this site helpful, Heather:

http://mybreathing.mymnd.org.uk/

Love Ellie.

[Ellie]

I was assuming that taking it might at least temporarily help with quality of life in making you less tired and more energy, and I am assuming that stopping it when dependant is a quicker and better way to go than letting your breathing deteriorate without help. But maybe I am wrong about this, and would love to know the experience of others.

I have used NIV for a number of years, Heather, and yes, it definitely means that I get good quality sleep, giving me the physical and mental energy to eat, live and be happy.

I cannot sleep without NIV - if I do manage to fall asleep, I wake up after about 20mins, gasping for breath - so I am dependent on it overnight, but not during the day. I have very poor lung function, so this wouldn't mirror the experience of most NIV users here.

Regarding the "better way to go": when breathing gets very low, NIV is usually stopped and palliative meds given, in the same way as to a non-NIV user.

Love Ellie.

[Heather R]

Thanks, Ellie x

[ElliWilson]

This study is still open and looking for participants! So if you are a person with MND, a family member or someone who has been bereaved and you have experience of home ventilation use I would be very keen to hear from you.
Further information about the study can be found on the website: https://www.mndassociation.org/research/get-involved-in-research/take-part-in-research/ventmnd

or please do get in touch if you have any queries: [email protected] 07971 036520

with thanks
Elli

[Ellie]

ElliWilson If I'm being honest Elli, the title of this thread alone is the exact opposite of Clickbait, more of a click aversion.

FWIW, here's my opinion: I know dying is part of MND, as it is with every living being, but I think you may have your work cut out for you in enrolling your target number of participants with such a bleak title...

Love Ellie.

[ElliWilson]

ElliWilson If I'm being honest Elli, the title of this thread alone is the exact opposite of Clickbait, more of a click aversion.

FWIW, here's my opinion: I know dying is part of MND, as it is with every living being, but I think you may have your work cut out for you in enrolling your target number of participants with such a bleak title...

Love Ellie.

Hi Ellie,
Thank you for your honest comment. You are right and it's a common problem in my line of research! It is difficult to strike the balance between being honest about what the research is about and not putting people off. I would welcome any suggestions!

[Rosemary6NT]

ElliWilson I joined this forum late last year so missed this thread. This is of immediate interest for me as in the last month or so I have become dependent on NIV and feel I have not got long to go. Very fearful at the moment as still eating and drinking normally. Wondering how effectively withdrawal can be managed avoiding horrible panic 😭

[ElliWilson]

ElliWilson I joined this forum late last year so missed this thread. This is of immediate interest for me as in the last month or so I have become dependent on NIV and feel I have not got long to go. Very fearful at the moment as still eating and drinking normally. Wondering how effectively withdrawal can be managed avoiding horrible panic 😭

Hi Rosemary, I am sorry I have only just seen your post. It may be worth discussing your concerns with your ventilation team. I know this is a really difficult topic but if you feel you would be willing to share your experience as part of the research please do get in touch [email protected]. Interviews can be done over a video platform or via email exchanges if you prefer.