For people living with motor neurone disease (MND), decisions about breathing support can be some of the most complex and emotional they face.
Research funded by the Association and led by Dr Eleanor Wilson at the University of Nottingham is helping to fill a major gap in understanding by exploring what life is really like for people using tracheostomy ventilation (TV), and for the families who support them. The findings offer valuable insight into the realities of living with TV, highlighting both the benefits and challenges it can bring.
Understanding tracheostomy ventilation
As MND progresses, weakening of the breathing muscles leads to breathlessness and people are likely to become reliant on ventilation. There are two types of assisted ventilation to help with breathing.
In the UK, non-invasive ventilation (NIV) is the most common. This type of ventilation uses a specialised face mask and a machine to increase airflow to the lungs.
TV, on the other hand, helps a person breathe by delivering air from a ventilator through a tube that is surgically placed into the windpipe under anaesthetic. It’s much less common than NIV and in the UK is only used by approximately 1% of people with MND. This contrasts with countries such as Italy, the USA and Japan where usage rates are considerably higher, ranging from 5% to 33%.
While both types of ventilation can help manage breathing difficulties and extend life, neither type will prevent progressive weakening of the muscles. Some observational studies suggest that TV may prolong survival compared with NIV in selected people, although the evidence is not conclusive and outcomes vary widely.
The study
This UK-wide study aimed to explore the impact of TV on daily life, quality of life and family relationships. The research team spoke with 14 people living with MND who use TV, 16 family members and 24 healthcare professionals from across the UK.
The aim was to improve understanding of the benefits and burdens of TV, how it affects quality of life and what healthcare professionals know and think about TV.
Key findings
One of the study’s strongest messages was that open and honest conversations between healthcare professionals, people with MND and their families about the potential benefits and challenges of TV are essential.
Most people with MND and their family members thought the most significant benefit of TV was that it may prolong life. However, many acknowledged it also brought significant changes to daily living.
Life at home: rewards and realities
For most participants, the greatest benefit of TV was having more time with family and friends. Being able to share milestones, maintain relationships and continue meaningful activities contributed strongly to quality of life.
At the same time, participants were realistic about the demands of TV. Living with advanced MND often required ongoing adaptation, support from care teams and acceptance of significant changes and challenges. The study found that quality of life can still be meaningful and rewarding, even in the presence of complex care needs.
The challenges of TV
Study participants highlighted the practical realities of living with TV. They felt it was important to understand not only the procedure itself, but also that life afterwards would look very different. They described challenges such as communication difficulties, frequent suctioning, delays in arranging home care packages, adapting the home environment and adjusting to the constant presence of professional home carers.
Many of the study participants had discussed TV with healthcare professionals before it was needed, but access to planned surgery could be difficult. Six of the participants started TV following a planned operation, whereas for eight people TV was the outcome of an emergency hospital admission, which could be highly stressful for both the person with MND and their family.
Some people reported having to move house or have significant adaptations to their home to accommodate carers and equipment. Others had to move away from their families to receive the care they needed, which caused emotional distress and placed additional strain on maintaining family relationships.
Family experiences
Family members play a vital role in supporting loved ones who use TV and the research emphasised that decisions about TV affect entire families, not just the person receiving treatment.
The study found that families had mixed experiences. While many valued the extra time TV gave them, they also described emotional, practical and logistical challenges. Some recalled traumatic experiences when TV was introduced during an emergency. Others spoke about the impact of home adaptations and coordinating care.
Having care workers present around the clock meant maintaining privacy and adapting to a constant professional presence in the home could be a challenge. Where homecare worked well, relatives felt more able to look after their own wellbeing.
For some relatives, quality of life was closely linked to the wellbeing of the person living with MND. Family members often adapted alongside their loved one, finding comfort in simple shared activities such as watching television together or spending quiet time as a family.
However, some also reported feeling isolated or lacking adequate support. Peer connections with others who had faced similar decisions were highly valued but were not always easy to access.
Supporting informed choices
Healthcare professionals who took part in the study recognised the complexity of decisions around TV. Many acknowledged having limited experience of supporting people with MND who use TV, simply because it remains relatively uncommon in the UK.
The study suggests there’s a need for more open and supportive discussions about what life with TV may involve, including its practical, psychological and social impacts. Better information can help individuals and families consider not only survival, but also how TV might affect day-to-day life.
It’s also important to discuss future preferences, as MND will continue to progress over time. This includes planning for situations in which a person may decide they no longer wish to continue TV or when it’s no longer providing the same benefits.
Resources to come out of the study
To make the research accessible, the researchers have developed a practical, video-based resource featuring first-hand experiences of TV from participants in the study. Designed for patients, families and healthcare professionals, it explores the benefits and challenges of TV, decision-making and managing life with TV at home. The resource aims to support informed decision-making and improve understanding of TV in clinical practice and can be found via the MND Association’s information pages on breathing support and decision-making.
The researchers have also created a short animated film, which highlights the key findings from the study.
Next steps
The study recognised the crucial role of paid homecare workers in supporting people with MND at home. Building on these findings, Dr Wilson and her team secured funding from the Association for a study examining complex homecare in MND. The study is exploring the skills, responsibilities and experiences of homecare workers. The goal is to improve care at home, reduce avoidable hospital admissions and provide better support for families. More information on the study can be found here.
Every experience is different
This study offers the most detailed UK picture to date into the realities of living with TV and its impact on families. It offers valuable insights that can support more informed conversations and better decision-making in the future. Perhaps its most important message is that experiences are highly individual. For some, TV provides precious extra time and opportunities to remain involved in family life. For others, the practical and emotional challenges can be considerable.
Further reading
For more information on breathing and ventilation in MND, please head to our Breathing and ventilation | MND Association page, which has links to our information sheets and decisions aids including the MyBreathing website developed by the Sheffield Institute for Translational Neuroscience (SITraN), as well as the TV resource mentioned above.
Additional information on symptoms, treatment and care for people with or affected by MND or Kennedy’s disease can be found at mndassociation.org/careinfofinder.
Our dedicated information resources for health and social care professionals can be found at mndassociation.org/pro-info-finder.
Thanks to Kaye Stevens, Care Information Manager at the MND Association, for review and valuable input.
