Invasive Ventilation
Understand tracheostomy ventilation and the decisions involved
Review status: Waiting for team review. An AI editorial check was completed on 2026-08-14 by claude-opus-5. It checks clarity, attribution and scope against the sources, and it is not a Compass team or clinical sign-off. Waiting for clinical review. Last updated 2026-08-14.
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Planning 3
- Understand what it involvesAsk your team what invasive ventilation and a tracheostomy actually mean, and what daily life with them is like.Why it matters: A clear, honest picture is the foundation for a decision that is truly your own.
- Weigh it against what matters to youThink through the possible benefits and burdens in light of your own values, with your team and people close to you.Why it matters: This is a deeply personal decision, and there is no single right answer.
- Talk it through and plan aheadDiscuss your thinking with your team and family, record your wishes, and know the decision can be revisited.Why it matters: Deciding ahead, while there is time, means your wishes are known and eases pressure in an emergency.
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Invasive ventilation is a way of supporting breathing through a small, surgically created opening in the windpipe (the trachea), low in the front of the neck. This opening is called a tracheostomy. A short tube sits in it and connects to a ventilator, a machine that moves air in and out of the lungs. Because the ventilator is attached directly to the airway, it can usually provide breathing support continuously, day and night.
How this is different from NIV
You may already be using, or hearing about, NIV (non-invasive ventilation). The key difference is simple:
- NIV delivers air through a mask worn over the nose, the mouth, or both. There is no surgery and no tube into the windpipe. It is often used at night at first, and for part of the day as breathing changes.
- Invasive ventilation uses a tracheostomy (a surgical airway) and usually provides continuous support.
NIV is covered on a separate card. The short version: NIV works over the airway with a mask, while invasive ventilation works through a surgical opening in the airway.
Why it is described as a major step
Invasive ventilation is not simply a stronger version of NIV. It is a significant step that changes daily life and care needs. For many people it means:
- support that is needed around the clock
- changes to how you speak. Air no longer passes the voice box in the usual way. Whether and how someone can still speak depends on the tube setup and settings and varies from person to person, and there are tools and techniques that help with communication
- a higher level of ongoing care, which means trained caregivers and regular attention to the tube and airway
- decisions about where care happens, such as at home or in another care setting
ALS/MND continues to progress even with invasive ventilation. It can extend life for some people, but it does not slow or stop the underlying condition.
This is a personal choice
There is no single right answer here. Some people living with ALS/MND choose to have invasive ventilation, and some choose not to. Both are understandable and fully respected decisions, and what matters is what fits your own values, hopes, and goals.
Whatever you decide, comfort-focused (palliative) care is always available to support breathing and wellbeing. It can be used alongside invasive ventilation, or instead of it.
Because this is such a personal and far-reaching decision, it helps to talk it through early and calmly with the people close to you and your care team, well before any breathing crisis. That way, your wishes are known and can guide what happens. The other questions on this card look at when this decision tends to come up, the benefits and burdens to weigh, what daily life can be like, and how to approach it.
Explained: what this word meansEvidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 2. Invasive ventilation brings a higher level of ongoing care, with trained caregivers and regular attention to the tube and airway.
Supports this. Tracheostomy and Ventilation in ALS (Part 1) — ALS Therapy Development Institute · Organisation
Says the care is constant rather than periodic, and explains why: someone has to be there for airway emergencies such as the breathing tube blocking or coming apart.
“At least one person must be present at all times to deal with potentially fatal emergencies such as a blockage in the breathing tube or if it becomes disconnected.”
Tracheostomy and Ventilation in ALS, Part 1: Clinicians Share What People with ALS Need to Consider when Making a DecisionLink checked August 2026
Supports this. Invasive Mechanical Ventilation (ALS Respiratory Guide) — ALS Network · Organisation
Is specific about the training: paid carers have to be vent-trained professionals, and family members have to complete training before the person comes home.
“If you hire caregivers, they must be skilled, vent-trained professionals.”
What type of care would I need?Link checked August 2026
Statement 2 of 2. Invasive ventilation can add time for some people, but it does not slow or stop ALS/MND itself.
Supports this. Tracheostomy and Ventilation in ALS (Part 1) — ALS Therapy Development Institute · Organisation
Makes both halves of the point in one place. An ALS nurse practitioner says the procedure keeps someone alive who is in danger of respiratory failure, while the disease carries on taking motor function.
“Darlene also says that it's important to note that the procedure does not halt the progression of ALS.”
The Challenges of Life with a Trach and VentLink checked August 2026
Qualifies this. Mechanical ventilation for amyotrophic lateral sclerosis/motor neuron disease — Cochrane · Research review · 2017
This Cochrane review set out to assess tracheostomy ventilation as well as mask ventilation, and every randomised trial it found tested mask ventilation. So the survival claim for invasive ventilation rests on observation rather than on randomised evidence.
“Randomised controlled trials (RCTs) and quasi-RCTs involving non-invasive or tracheostomy-assisted ventilation in participants with a clinical diagnosis of ALS, independent of the reported outcomes.”
Selection criteriaLink checked August 2026
Used across the whole answer
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Invasive ventilation means breathing support given through a surgical opening in the neck (a tracheostomy), usually with a ventilator providing support for most or all of the day. It is different from mask-based NIV, which is covered on a separate card. For most people living with ALS/MND, the question of whether to consider it tends to come up in one of two ways: as something thought about ahead of time, or in an unexpected emergency.
It is a deeply personal decision. There is no right or wrong answer: some people living with ALS/MND choose invasive ventilation, and some choose not to, and both are understandable and fully respected. Whatever someone decides, comfort-focused (palliative) care is available to support breathing, ease symptoms and help someone feel as well as possible.
When it might come up as a planned decision
As ALS/MND affects the muscles used for breathing, mask-based NIV often helps for a long time. For some people, there may come a point where breathing weakens further and NIV no longer gives them the support they want. Where invasive ventilation is discussed as a planned decision, this is usually when it comes up, though it is not always raised and how often it is offered varies a great deal between countries and care systems. In some places very few people with ALS/MND use it at all. How and when any of this happens varies a great deal from person to person. Some consider invasive ventilation, and some never do.
Around that stage, a care team may raise invasive ventilation as one option to think about, alongside continuing with comfort-focused care. This is usually a gradual conversation rather than a single moment. Talking about it while breathing is relatively stable can give more time to weigh what matters to you, without pressure.
When it might come up in an emergency
Sometimes breathing problems come on suddenly, before a clear plan is in place. In a breathing crisis, emergency teams act quickly to help someone breathe. This is often with a breathing tube placed through the mouth. A tube like this is not the same as a tracheostomy, and a tracheostomy is usually a separate step decided on later. But that decision may still have to be made quickly, and if a person's wishes were not known, it may fall to family and the care team rather than to the person themselves.
This is not said to frighten you. It is simply why many teams encourage talking about these wishes early and calmly, so your wishes can guide what happens.
Why talking early helps
The main reason to discuss this sooner rather than later is that when your wishes are known and recorded, they can guide what happens. Your care team and the people close to you then know what you want, whether that is to have invasive ventilation, to decline it, or to focus on comfort. What a recorded wish carries in law depends on where you live and on what you record, and your care team can explain how that works locally. Writing your wishes down is part of advance care planning (covered on its own card).
It is also honest to know that invasive ventilation can extend life for some people, while ALS/MND continues to progress, and that it usually brings significant changes. These include around-the-clock care, effects on communication, and a real impact on caregivers and on where care happens. Teams, equipment and comfort-focused care exist to help with these, whichever way someone decides. The other questions on this card look at those benefits, burdens and daily realities in more detail.
You do not have to settle everything at once, and you can change your mind. The aim is simply that the people who may have to act know what is right for you.
Explained: what this word meansEvidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 4. 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.
Supports this. Tracheostomy and Ventilation in ALS (Part 1) — ALS Therapy Development Institute · Organisation
Two ALS nurse practitioners describe this as the usual route to the decision at their US specialist centre. The same article puts the numbers in context: one of them estimates that around 2 to 3 per cent of the people receiving ALS care there opt for a tracheostomy and ventilator, so this describes one service's pathway rather than what happens everywhere.
“Usually, a trach and vent are considered when someone has been using non-invasive ventilation, like a BiPAP machine, but it is no longer sufficient to support their breathing.”
Helping People with ALSLink checked August 2026
Qualifies this. Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review — Brain Sciences · Research review · August 2024
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.
Link checked August 2026
Statement 2 of 4. Invasive ventilation can also arise suddenly, in a breathing emergency, before any plan is in place.
Supports this. Tracheostomy and Ventilation in ALS (Part 1) — ALS Therapy Development Institute · Organisation
Names the emergency route alongside the planned one, and gives a chest infection that someone cannot recover from as an example of how it happens.
“However, a trach and vent can also become necessary in some emergency situations, such as if someone with ALS comes down with pneumonia and cannot recover on their own.”
Helping People with ALSLink checked August 2026
Adds context. Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review — Brain Sciences · Research review · August 2024
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.
Link checked August 2026
Statement 3 of 4. Talking about this and recording your wishes before a crisis means they can be known and taken into account.
Supports this. Tracheostomy and Ventilation in ALS (Part 1) — ALS Therapy Development Institute · Organisation
Clinicians who support people through this decision give exactly this reason for raising it early, and say plainly that the aim is to settle wishes before the moment arrives rather than in it. It is their reason for having the conversation, not evidence about what a recorded wish obliges anyone to do.
“Therefore, Jennifer and Darlene emphasize it's critical for people with ALS to consider their wishes and consult with their care teams before those points are reached.”
Helping People with ALSLink checked August 2026
Supports this. Invasive Mechanical Ventilation (ALS Respiratory Guide) — ALS Network · Organisation
A US patient organisation guide that closes its section on making this decision with the recording step itself: once you have decided, write it down so the people around you and the professionals treating you know what you want. It is advice about being clear, not a statement of legal effect. The same source and quote carry this point on question 06.
“Once you make your decision, be sure to fill out advance directives to make your wishes very clear to your loved ones and medical professionals.”
How should I make this decision?Link checked August 2026
Adds context. NICE MND guideline — NICE · Clinical guideline
The UK MND guideline tells teams to open this conversation at set trigger points, one of which is a significant change in breathing. It is guidance on when clinicians should ask, not evidence about what recording wishes achieves.
“Offer the person with MND the opportunity to discuss their preferences and concerns about care at the end of life at trigger points such as: at diagnosis, if there is a significant change in respiratory function, or if interventions such as gastrostomy or non-invasive ventilation are needed.”
1.7.1Link checked August 2026
Statement 4 of 4. Invasive ventilation can add time for some people, while ALS/MND carries on progressing.
Supports this. Tracheostomy and Ventilation in ALS (Part 1) — ALS Therapy Development Institute · Organisation
Puts both halves together: it can keep someone alive who would otherwise die of respiratory failure, and they go on losing motor function all the same.
“While it can keep someone in danger of respiratory failure alive, people with a trach and vent will continue to lose motor function.”
The Challenges of Life with a Trach and VentLink checked August 2026
Used across the whole answer
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Invasive ventilation means breathing support given through a surgical opening in the windpipe (a tracheostomy), usually connected to a ventilator for much or all of the day and night. It is different from mask-based support (NIV), covered on a separate card. Deciding whether to have it is one of the most personal choices in ALS/MND, and there is no single right answer. Some people choose it; some choose not to. Both are understandable, fully respected decisions, and comfort-focused care is available either way.
It can help to look honestly at both sides.
Possible benefits
- It can extend life for some people. Because it takes over the work of breathing, invasive ventilation can add time. How much varies a great deal between people and cannot be predicted in advance.
- It can ease the feeling of breathlessness. When breathing is hard, it can bring real physical relief.
- It can fit some people's goals. For some, continuing to live as long as possible is a central goal, and invasive ventilation can support that. It can mean more time, and more moments with the people who matter.
Possible burdens
- ALS/MND keeps progressing. Invasive ventilation supports breathing, but it does not slow or stop the disease. Other abilities, such as movement, may continue to change over time.
- Care becomes continuous. Living with a tracheostomy and ventilator means constant care, 24 hours a day and 7 days a week, for the rest of a person's life, including managing the airway and the equipment. Who provides that care varies: some families arrange skilled, vent-trained nursing, and in practice much of it usually falls to family.
- Speaking and eating may change. A tracheostomy can affect the voice, and many people use other ways to communicate. Eating by mouth may also be affected.
- A heavy impact on caregivers. Partners and family often carry a large physical and emotional load. Research on families in this situation finds their own quality of life is often affected at least as much as that of the person using the ventilator.
- Where care happens may shift. Continuous care at home is possible for some but demanding to arrange; for others, care may need to move to a different setting. What is possible varies a great deal by location and circumstances.
- Communication and movement may narrow over time. As the disease progresses, some people find it harder to move or to communicate, even while using the ventilator.
Support exists for many of these. Care teams, equipment, and comfort-focused care can help, whichever way someone decides.
How to weigh it up
This is best thought of as a values-and-goals decision, not only a medical one. It can help to ask: What matters most to me? What kind of daily life do I want? What would feel like enough time, and at what cost to me and the people I love? There are no wrong answers to these questions.
Choosing not to have invasive ventilation is not the same as being left without support: comfort-focused (palliative) care actively supports breathing and wellbeing, and for some people it is the path that best fits their values and the time they have. Choosing to have it is an equally valid path for those whose goals it fits.
It is also worth talking about this early and calmly, before any crisis, and recording your wishes. The advance care planning and palliative care cards are where to take that conversation further. Talking ahead of time is not about expecting the worst; it is about making sure the people around you know what matters to you before anyone has to act.
Explained: what this word meansEvidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 5. Invasive ventilation can lengthen survival for some people with ALS/MND.
Supports this. Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review — Brain Sciences · Research review · August 2024
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.
Link checked August 2026
Qualifies this. Mechanical ventilation for amyotrophic lateral sclerosis/motor neuron disease — Cochrane · Research review · 2017
This Cochrane review looked for randomised trials of tracheostomy ventilation as well as mask ventilation. Every trial it found tested mask ventilation, so the survival benefit of invasive ventilation has not been measured in a randomised trial and rests on observational studies.
“Randomised controlled trials (RCTs) and quasi-RCTs involving non-invasive or tracheostomy-assisted ventilation in participants with a clinical diagnosis of ALS, independent of the reported outcomes.”
Selection criteriaLink checked August 2026
Statement 2 of 5. Invasive ventilation supports breathing but does not slow or stop ALS/MND.
Supports this. Tracheostomy and Ventilation in ALS (Part 1) — ALS Therapy Development Institute · Organisation
An ALS nurse practitioner makes this the point she most wants people to understand before deciding: the procedure does not halt the disease, and motor function keeps being lost.
“Darlene also says that it's important to note that the procedure does not halt the progression of ALS.”
The Challenges of Life with a Trach and VentLink checked August 2026
Statement 3 of 5. Living with a tracheostomy and ventilator means constant care, 24 hours a day and 7 days a week, for the rest of the person's life.
Supports this. Tracheostomy and Ventilation in ALS (Part 1) — ALS Therapy Development Institute · Organisation
States the care requirement without qualification and says how long it lasts: constant care, 24 hours a day and 7 days a week, for the rest of the person's life, rather than through a recovery period.
“Once someone has undergone a trach and vent, they will require constant care, 24 hours a day, 7 days a week, for the rest of their life.”
Tracheostomy and Ventilation in ALS, Part 1: Clinicians Share What People with ALS Need to Consider when Making a DecisionLink checked August 2026
Supports this. Invasive Mechanical Ventilation (ALS Respiratory Guide) — ALS Network · Organisation
Sets the same expectation for anyone going on invasive ventilation, full-time connection to the ventilator and 24/7 care, and adds what skilled means in practice: paid carers have to be vent-trained professionals, and family members who take it on need full training first.
“Going on invasive mechanical ventilation means that you will need to be connected to your ventilator full-time and will need 24/7 care.”
What would this mean for me?Link checked August 2026
Statement 4 of 5. Family members' own quality of life is often affected at least as much as that of the person using tracheostomy ventilation.
Supports this. Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review — Brain Sciences · Research review · August 2024
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.
Link checked August 2026
Statement 5 of 5. For some people, care may need to move from home to another setting.
Qualifies this. Tracheostomy and Ventilation in ALS (Part 1) — ALS Therapy Development Institute · Organisation
Agrees a move is an option for some, but adds a practical limit the answer does not: places equipped for a person on a ventilator are scarce and in high demand, which is why the care usually falls to family instead.
“Entering a nursing home or other residential care facility can be an option for some, but facilities equipped to care for people with a tracheostomy on a ventilator are not common and are highly sought-after.”
Tracheostomy and Ventilation in ALS, Part 1: Clinicians Share What People with ALS Need to Consider when Making a DecisionLink checked August 2026
Used across the whole answer
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Daily life with a tracheostomy and ventilator looks different from one person to the next. For some it settles into a manageable routine at home; for others it is demanding and tiring. What follows is a general picture so you know roughly what to expect. It is not a prediction of how it will be for you. (This describes invasive ventilation, a tracheostomy and ventilator, which is different from mask-based NIV. See the NIV card.)
A tracheostomy is a surgical opening in the neck that connects to a ventilator, which does much or all of the work of breathing. Because the airway now needs ongoing attention, care happens around the clock.
What the day-to-day involves
Most routines include:
- Suctioning to clear mucus and saliva from the airway, since the cough is weaker. How often this is needed varies from person to person, and it can be very frequent. One guide for families describes suctioning the airway multiple times an hour at home.
- Caring for the tracheostomy site and tubing. This means keeping it clean, changing dressings, and watching for signs of infection.
- Managing the equipment. This means checking ventilator settings, humidification, batteries and backups, and responding to alarms.
Most people also use a feeding tube for nutrition, and for anyone who does not already have one this usually becomes part of the same decision. Many people are also already using a cough assist device for secretions.
A trained person has to be physically present at all times, day and night, because a blocked or disconnected breathing tube is a potentially fatal emergency, and having someone on call or nearby is not enough. A nurse practitioner at a specialist ALS centre, describing what she tells people considering this, says two people have to be able to be there with you at all times, because there are no days off and it is life or death.
Communication often changes
Speech usually changes with a tracheostomy, because air is redirected away from the voice box. Some people can still speak, for example with a speaking valve or adjusted ventilator settings, though this depends on the tube setup and on the person. Others find speaking becomes difficult or no longer possible, and some guides for families say to expect that communication will be through a speech-generating device. It is worth planning for other ways to communicate from the start.
When voice changes, other ways of communicating are used. These include eye-gaze computers, text-to-speech tools, letter boards, or a caregiver reading mouth movements. Many people find ways to keep communicating, though which methods work depends on the person and can change as ALS/MND progresses. It takes adjustment and patience on both sides.
Who provides care, and where
Care is usually shared between family and trained nurses or carers, in whatever mix is workable. Some families manage much of it themselves; others bring in paid nursing help for part or all of the day. Care can take place at home or in a care facility. With the right equipment and trained support, home is possible for some people, and a portable ventilator can often be mounted on a wheelchair. Going out is possible with planning, including portable suction, batteries and a trained person. For others, a facility better matches the level of care needed. What can be arranged varies a great deal by location and circumstances, and there is no single right setting.
The human side
This is a demanding routine, and it is honest to say it can be a lot for the person and for those caring for them. Caregiver tiredness is common, and regular breaks and outside support matter. At the same time, many people and families find their own routine, share ordinary moments, and keep doing things that matter to them. Experiences genuinely range from very demanding to more settled, and both are real.
Whatever daily life ends up looking like, comfort-focused (palliative) care to ease symptoms is available alongside it, or instead of it. Wishes can also be recorded in advance. The palliative care, advance care planning and caregiver coordination cards go further into comfort care, planning, and organising support.
Explained: what this word meansEvidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 6. Suctioning can be needed very frequently, with one family guide describing it multiple times an hour at home.
Supports this. Invasive Mechanical Ventilation (ALS Respiratory Guide) — ALS Network · Organisation
Describes what family carers take on once the person is home, and puts the suctioning frequency at multiple times an hour alongside caring for the tracheostomy site and keeping supplies up.
“Once at home, family caregivers will need to care for the trach site, maintain supplies, and suction secretions from the airway multiple times an hour.”
What type of care would I need?Link checked August 2026
Statement 2 of 6. A trained person has to be physically present at all times, day and night, because a blocked or disconnected breathing tube is a potentially fatal emergency.
Supports this. Tracheostomy and Ventilation in ALS (Part 1) — ALS Therapy Development Institute · Organisation
States the requirement as presence rather than availability, and gives the reason it has to be continuous rather than scheduled: the breathing tube can block or come apart, and either is a potentially fatal emergency that needs someone there to deal with it.
“At least one person must be present at all times to deal with potentially fatal emergencies such as a blockage in the breathing tube or if it becomes disconnected.”
Tracheostomy and Ventilation in ALS, Part 1: Clinicians Share What People with ALS Need to Consider when Making a DecisionLink checked August 2026
Statement 3 of 6. A nurse practitioner at a specialist ALS centre tells people considering a tracheostomy that two people have to be able to be there at all times, because it is life or death.
Supports this. Tracheostomy and Ventilation in ALS (Part 1) — ALS Therapy Development Institute · Organisation
An interview with two nurse practitioners at a US specialist ALS centre who have spent years supporting people through this decision. One of them, Darlene Sawicki, NP, gives these words as what she tells people considering a tracheostomy: cover has to stretch to two people, because there are no vacation or sick days and it is life or death. One clinician's counselling, not a staffing standard.
“There are no sick days. Two people have to be able to be there with you [at all times], because it is life or death.”
Helping People with ALSLink checked August 2026
Statement 4 of 6. Most people using a tracheostomy and ventilator also use a feeding tube, and for anyone without one it usually comes with the decision.
Supports this. Tracheostomy and Ventilation in ALS (Part 1) — ALS Therapy Development Institute · Organisation
Describes a feeding tube not as something many people also use but as something that comes with the tracheostomy for anyone who does not already have one.
“People with tracheostomies must also go on a feeding tube if they were not already.”
The Challenges of Life with a Trach and VentLink checked August 2026
Supports this. Invasive Mechanical Ventilation (ALS Respiratory Guide) — ALS Network · Organisation
Sets the same expectation in its summary of what invasive ventilation means for someone, listing feeding by tube alongside full-time ventilation and round-the-clock care.
“You will receive nutrition through a feeding tube”
What would this mean for me?Link checked August 2026
Statement 5 of 6. Care at home is possible for some people with the right equipment and trained support.
Qualifies this. Tracheostomy and Ventilation in ALS (Part 1) — ALS Therapy Development Institute · Organisation
Agrees home is possible, but says who ends up doing the work. Professional in-home care can run to hundreds of thousands of dollars a year and specialist facilities are scarce, so in practice the caring falls to the people around the person.
“This means that for most people with ALS who undergo the procedure, the burden of caregiving will fall on their family or friends.”
Tracheostomy and Ventilation in ALS, Part 1: Clinicians Share What People with ALS Need to Consider when Making a DecisionLink checked August 2026
Statement 6 of 6. Tiredness among caregivers is common, and breaks and outside support make a difference.
Supports this. Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review — Brain Sciences · Research review · August 2024
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.
Link checked August 2026
Used across the whole answer
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There is no single right answer here, and no timeline you have to keep up with. Invasive ventilation means a tracheostomy with a ventilator that breathes for you. Whether to have it is a deeply personal decision. It is shaped by what matters most to you: your values, your hopes, what a good day looks like for you, and what you would and would not want for the future.
It is worth saying plainly: some people living with ALS/MND choose to have invasive ventilation, and some choose not to. Both are understandable, fully respected choices. Comfort-focused care to ease breathing and other symptoms is available to you either way.
This is different from mask-based breathing support (NIV), which many people use earlier on and which is covered on its own card. Invasive ventilation usually means a surgical airway in the neck and ongoing, often around-the-clock, support from the machine and from people caring for you.
There is no rush, and you do not have to decide alone. This is a decision best made with time and good information, ideally before any breathing crisis. Talking about it early does not commit you to anything. It simply means your wishes are known.
A few things that can help you weigh it:
- Notice what you are really asking. Is it "Would this be right for me?", "What would daily life look like?", or "How would my family cope?" Naming the question helps the right people answer it.
- Think about your goals and what gives your life meaning. Also think about what trade-offs you would, and would not, find acceptable.
- Consider the honest picture on both sides. Invasive ventilation can extend life for some people, and some find that time meaningful. At the same time, ALS/MND keeps progressing, and it typically brings significant changes. These include intensive daily care, changes to how you communicate, a real impact on those close to you, and questions about where care happens. Holding both of these together is part of the decision.
- Write down your questions as they come to you, and bring someone you trust to appointments.
Who can help:
- Your neurologist, for how ALS/MND is changing for you and what to expect.
- The respiratory or breathing team, for what invasive ventilation involves day to day, and the practicalities.
- Palliative or supportive care, who focus on comfort and quality of life. They are helpful to involve early, alongside other care, not only near the end of life.
- Your family and those close to you, whose lives this also touches, and whose support matters.
- Others who have faced this choice, through peer or community support, if hearing lived experience would help you.
It is completely reasonable to ask for plain-language explanations, to take your time, and to change your mind as your situation or feelings shift.
One gentle reason to talk early: if breathing suddenly becomes an emergency and your wishes were never discussed, you could receive urgent breathing support at a moment when there is no time for a planned conversation. That support could include a tracheostomy. Talking calmly in advance means your wishes are known and can guide what happens. Writing your wishes down, so your team and family understand them, is part of advance care planning (covered on its own card).
Explained: what this word meansEvidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 3. Invasive ventilation can give some people more time, and some people find that time worthwhile.
Supports this. Tracheostomy and Ventilation in ALS (Part 1) — ALS Therapy Development Institute · Organisation
Says both parts, and says what the extra time is for in people's own terms rather than in months. It reports the same clinicians who set out the burdens also seeing people who do well afterwards.
“Still, for some people, a tracheostomy can mean more time with loved ones, watching children grow up, or just an opportunity to continue living one's life.”
Tracheostomy and Ventilation in ALS, Part 1: Clinicians Share What People with ALS Need to Consider when Making a DecisionLink checked August 2026
Statement 2 of 3. Palliative care can be involved early and alongside other care, not only at the end of life.
Supports this. NICE MND guideline — NICE · Clinical guideline
The UK MND guideline bases referral on anticipated needs as well as current ones, which is what involving palliative care early means in practice. It also places palliative care expertise inside the MND multidisciplinary team at recommendation 1.5.4, so it sits alongside other care rather than replacing it.
“Consider referral to a specialist palliative care team for people with current or anticipated significant or complex needs, for example, psychological or social distress, troublesome or rapidly progressing symptoms and complex future care planning needs.”
1.5.11Link checked August 2026
Statement 3 of 3. If a breathing emergency happens before anyone knows your wishes, urgent treatment may be given when there is no time to discuss it.
Supports this. Tracheostomy and Ventilation in ALS (Part 1) — ALS Therapy Development Institute · Organisation
Sets out the same sequence. It says a tracheostomy can become necessary in an emergency such as a chest infection, and that this is precisely why the clinicians interviewed press people to settle their wishes beforehand rather than in the moment.
“Therefore, Jennifer and Darlene emphasize it's critical for people with ALS to consider their wishes and consult with their care teams before those points are reached.”
Helping People with ALSLink checked August 2026
Used across the whole answer
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Yes. You can think about invasive ventilation well before it ever becomes an urgent question, and you can record what you would want. You do not have to decide everything now, and a decision you make today does not have to be final.
Planning ahead can help. Many people living with ALS/MND find it helps to talk through their wishes about breathing support early, while there is time to ask questions and reflect, rather than during a sudden breathing crisis. Writing down what matters to you means your wishes can be known and taken into account even if you cannot speak for yourself later. What a written wish carries in law depends on where you live and on what you record: in many places a recorded refusal of a treatment is binding, while a recorded wish to have a treatment has to be taken into account but does not oblige a team to provide it. Your care team can explain how this works where you live. A plan also only changes what happens if the people who need it can find it at the time, so it is worth making sure your care team and the people close to you have a copy on record. This kind of planning is what advance care planning is for, and the people close to you can be part of it.
Either choice can be planned for. Choosing to have invasive ventilation and choosing not to have it are both understandable, fully respected decisions, and each deserves the same care and support. You can record a decision to have it, or to decline it, ahead of time.
Your decision can change. As your situation, priorities, or how you feel change over time, you can revisit what you want. Someone may feel one way early on and differently later, and that is okay. Plans can be reviewed and updated, and it helps to keep family, caregivers and your care team in the conversation as things change.
Stopping is also a supported choice. If invasive ventilation is started and someone later decides it is no longer right for them, they can ask for it to be stopped. This is a recognised and respected decision in many places, and your care team can explain how it is handled where you live. Teams and families often describe stopping as a heavier process than declining in advance, both emotionally and practically. Your care team and palliative care support guide you and your family through it, with comfort-focused care throughout. The advance care planning and palliative care cards are where to take this further.
Why talking early helps. Sometimes a breathing emergency happens before wishes have been discussed, and decisions may then have to be made quickly without knowing what the person would have wanted. Talking about it calmly and in advance means your wishes can guide what happens, rather than the timing of a crisis.
Whatever you decide, and whether or not that decision changes, comfort-focused care to support you and ease symptoms is available either way, throughout.
Explained: what this word meansEvidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 3. Recording your wishes means they can be known and taken into account if you cannot say them yourself later.
Supports this. Invasive Mechanical Ventilation (ALS Respiratory Guide) — ALS Network · Organisation
A US patient organisation guide that ends its section on making this decision with exactly this practical instruction: once you have decided, write it down so that the people around you and the professionals treating you know what you want. It is advice about being clear, not a statement of what a written wish obliges anyone to do.
“Once you make your decision, be sure to fill out advance directives to make your wishes very clear to your loved ones and medical professionals.”
How should I make this decision?Link checked August 2026
Adds context. NICE MND guideline — NICE · Clinical guideline
The UK MND guideline puts this on the care team rather than the person, listing advance decisions to refuse treatment and lasting power of attorney among the things teams should help people with. It is guidance on what should be offered, not evidence about what recording wishes achieves.
“Provide support and advice on advance care planning for end of life.”
1.7.3Link checked August 2026
Statement 2 of 3. A recorded plan only changes what happens if the people who need it can find it at the time.
Supports this. NICE MND guideline — NICE · Clinical guideline
The UK MND guideline treats getting the plan to where it can be found as part of the planning itself, and gives the person's shared electronic health record as its example of how.
“How to ensure advance care plans will be available when needed, for example, including the information on the person's Summary Care Record.”
1.7.3Link checked August 2026
Statement 3 of 3. A breathing emergency can arrive before wishes have been discussed, leaving decisions to be made quickly without knowing what the person wanted.
Supports this. Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review — Brain Sciences · Research review · August 2024
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.
Link checked August 2026
Used across the whole answer
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