Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review

Invasive Ventilation

• Can I plan ahead, and can the decision change later?

  ✓Supports this

  “A breathing emergency can arrive before wishes have been discussed, leaving decisions to be made quickly without knowing what the person wanted.”

  Reviews studies of people who started tracheostomy ventilation and their families. It found starts made in an emergency to be common, decisions often rushed, and both the person and the family left feeling insufficiently informed, including in one study where ventilation had been discussed in advance but the decision was still taken in a crisis.

• What are the possible benefits and burdens to weigh up?

  ✓Supports this

  “Invasive ventilation can lengthen survival for some people with ALS/MND.”

  A 2024 review of the research on tracheostomy ventilation in MND opens by stating that it can increase survival time, and notes that how much it is used differs from country to country.

• What are the possible benefits and burdens to weigh up?

  ✓Supports this

  “Family members' own quality of life is often affected at least as much as that of the person using tracheostomy ventilation.”

  Reviewing the studies together, it reports that family members' quality of life tends to be lower than that of the person using the ventilator, and links that to the complexity of the care and to starts made in an emergency.

• What is daily life like with a tracheostomy and ventilator?

  ✓Supports this

  “Tiredness among caregivers is common, and breaks and outside support make a difference.”

  Draws together studies of families supporting someone on tracheostomy ventilation. It reports extensive physical and emotional load and fear of burnout, and finds that family members who had support around them coped very differently from those who felt they had to put their own lives on hold.

• When might invasive ventilation become a decision, including in an emergency?

  iAdds context

  “Invasive ventilation can also arise suddenly, in a breathing emergency, before any plan is in place.”

  A review of the research on families and people using tracheostomy ventilation. It found that starting in an emergency is common enough to be studied as a factor in its own right, and that families described those emergency starts as chaotic and frightening.

• When might invasive ventilation become a decision, including in an emergency?

  !Qualifies this

  “Where invasive ventilation is discussed as a planned decision, it usually comes up once mask-based NIV is no longer enough, though it is not always raised and how often it is offered varies between countries.”

  A 2024 review showing how differently this plays out between countries. It reports 29 to 38 per cent of people with MND in Japan using tracheostomy ventilation, roughly 5 to 10 per cent in mainland Europe and the United States, and 1 per cent in the UK, where most were placed in an emergency. Where use is that low, most people are never offered it.