Motor neurone disease (MND), also known as ALS, causes progressive muscle weakness that eventually affects breathing. When wanting help to support their breathing the majority of people with MND in the UK use non-invasive ventilation. A small number consider a tracheostomy for longer-term ventilation support. Tracheostomy ventilation – or TV – involves placing a tube through the neck into the windpipe to support breathing by a ventilator. Read More
TV can extend life by several years, but it is not part of current routine UK NHS guidance, and fewer than 1% of people with MND currently use it. For those considering this option, knowing what to expect is vital.
Jon Palmer, respiratory nurse consultant at University Hospitals Plymouth, together with researchers from the University of Nottingham, have been working with people with MND who use TV, and their families to explore what this means for them. The study, funded by the Motor Neurone Disease Association, was a UK-wide project using in-depth interviews with patients, family members, and multidisciplinary healthcare professionals.
One of the strongest messages from the research and from Jon’s clinical experience is the importance of open discussions about the pros and cons of undertaking TV for MND. Most study participants had their tracheostomy placed in an emergency, leaving the patient and family members unprepared for the major changes that followed. Evidence suggests that when tracheostomy is planned electively – after thorough discussion and preparation – the experience is less traumatic, and hospital stay can be shorter.
Healthcare practitioners often fear that TV prolongs suffering rather than enhancing life. Yet the University of Nottingham team found that many people with MND who choose TV describe life afterwards as meaningful and worthwhile. They value being able to spend more time with family and take part in daily life. As one participant in the study explained: “The children don’t know me without the tracheostomy. And there’s nothing more I want than to get in the water with them when they’re swimming, I can’t, but I can watch, I can still be their dad”.
TV can also provide some relief from respiratory symptoms, with another participant from the research project saying: “If I have secretions in my chest the tracheostomy allows deep suction to clear the secretions. It is important because any chest congestion can cause infection. I’ve used TV for four years and I haven’t had a chest infection.”
Professionals who had seen positive outcomes tended to be more open to discussing TV with future patients. As one clinician said about her patient: “[They] certainly valued and expressed very clearly that they were glad they’d had TV, because they were glad they were still alive.”
Family members in the study described deep commitment but also significant strain. Many relatives described exhaustion, loss of privacy, and feeling “on alert” at all times. As one partner said: “Our teenagers have to be in a home where one room is like an intensive care unit, … it’s a very different environment.”
Despite this, family members also spoke of pride and meaning in supporting their loved one’s wish to live. Another participant said: “I’ve still got my husband, and I’ve still got a very positive man… He’s here, he loves his garden, … he loves his grandchildren.”
The clinical and research evidence stresses the need for better psychological and practical support for families, including honest discussions about the impact of TV. TV can extend life and relieve respiratory symptoms, but it brings major lifestyle changes. Conversations with patients and their families should cover how the TV procedure is performed, how long the hospital stay might be, and how it could affect communication and ongoing quality of life. Space, availability of homecare workers, financial pressures and privacy at home must also be considered, as most people with TV require 24-hour carers.
Planning ahead for when TV may no longer be of benefit or in what circumstances a person would wish the intervention to be withdrawn, is very important as muscle weakness will progress despite the TV, and worsening disability will affect the ability to communicate effectively.
To explore these issues further and hear the real experiences of people with MND and their families you can visit this webpage.
TV is not for everyone, but when it is chosen, with good preparation and support, it can provide valuable extra time and comfort. This research supports our clinical experience and reminds us that truly person-centred care means respecting individual values – balancing lifespan and quality of life in a way that feels right for each person and their family.
