Understanding living with tracheostomy ventilation (TV) for Motor Neurone Disease (MND) and the implications for quality of life

This study set out to explore patient, family and healthcare professional experiences of using tracheostomy ventilation (TV) to support breathing for people with Motor Neurone Disease (MND).

To date, we have spoken with:

• 14 people living with MND who use TV
• 17 family members (including bereaved family members) who have experience of supporting a person with MND to use TV
• 24 healthcare professionals who have experience of supporting a person with MND to use TV

We are in the process of analysing the information we have collected, and we will be publishing the findings of our research soon.

Tracheostomy ventilation is not often used by people with MND in the UK. Rates of TV are much higher In Japan, Italy, Spain, and the United States. The reasons for this are not clear and have not been explored. TV is not covered in the NICE guidance which supports the care of patients with MND in the UK.

We want to understand more about the experience of using TV and the implications for quality of life by speaking to people with MND who use TV themselves, as well as to family members and healthcare professionals involved in their care.

To better understand what it is like to live with TV, we have used interviews to allow participants to ‘talk’ to us in whatever way they prefer, such as by telephone or video call, or in emails or other forms of text messaging. We want to understand:

• how people make decisions about the use of TV
• any differences between choosing to have TV in advance and having TV placed in an emergency
• the impact of TV on daily life for people with MND and their family members

This project aimed to understand more about everyday experiences of using tracheostomy ventilation (TV) to support breathing for people living with MND and their family members. We wanted to find out how TV affects quality of life, and what healthcare professionals think about TV for people living with MND. Fourteen people living with MND who use TV told us about their experiences, along with sixteen family members and twenty-four healthcare professionals.

Six of our participants with MND started tracheostomy ventilation following a planned operation, whereas for eight people, TV was the outcome of an emergency hospital admission. All understood that TV was essential for them to stay alive, so ‘quality of life’ was primarily understood as having more time to spend with family and friends. Being able to share important milestones with their children was especially important. Overall, quality of life was an ever-changing concept; people living with MND were used to having to ‘accept and adapt’ as their illness progressed. Most chose to focus on the positive activities and relationships they were still able to enjoy and found purpose through continuing to engage with others. The need for frequent suctioning of saliva, difficulties with communication and having to get used to the constant presence of paid homecare workers were the biggest drawbacks.

For family members, ‘quality of life’ was more complex to define. For some, the process of starting TV had been a traumatic experience, where they felt they had to fight hard on behalf of the person with MND for the procedure to be carried out. The extensive changes required to the home to accommodate the equipment and workforce needed to support TV could be hard for family members to adjust to. Sometimes, it was not possible for people with MND to return home, which meant extra effort was required to maintain family relationships. However, like people with MND, family members had grown used to adapting and focussing on simple things that still gave pleasure, such as watching a favourite TV programme together. The effort and complexity of caring for someone using TV was made both better and worse by having to navigate relationships with paid homecare workers. Some family members felt isolated and lacking support from healthcare professionals.

All our participants spoke with healthcare professional about TV before going ahead with the procedure, but not all felt they were fully prepared for the reality of living with TV. Some had met with resistance from healthcare professionals they encountered. The healthcare professionals we spoke to have a range of views on TV for people living with MND, but all were concerned with trying to make the best possible assessment of how TV might impact on quality of life for the person with MND and their family. This was viewed as an on-going conversation that needed constant re-visiting with each case.

By listening to the experiences of people living with MND and their families, we have gained a clearer understanding of the impact of TV on quality of life and the complex considerations involved in planning, initiating and managing TV at home. For those suitable for TV, better understanding may enable greater choice about their care.