Tracheostomy and Ventilation in ALS (Part 1)

Used across the whole answer

Used across the whole answer

✓Supports this

“If a breathing emergency happens before anyone knows your wishes, urgent treatment may be given when there is no time to discuss it.”

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 ALS

✓Supports this

“Invasive ventilation can give some people more time, and some people find that time worthwhile.”

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 Decision

✓Supports this

“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.”

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 Decision

!Qualifies this

“For some people, care may need to move from home to another setting.”

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 Decision

✓Supports this

“Invasive ventilation supports breathing but does not slow or stop ALS/MND.”

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 Vent

✓Supports this

“Most people using a tracheostomy and ventilator also use a feeding tube, and for anyone without one it usually comes with the decision.”

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 Vent

!Qualifies this

“Care at home is possible for some people with the right equipment and trained support.”

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 Decision

✓Supports this

“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.”

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 Decision

✓Supports this

“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.”

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 ALS

Supports a claim in this answer

Invasive ventilation usually involves a higher level of ongoing care, including trained caregivers and regular attention to the tube and airway

✓Supports this

“Invasive ventilation can add time for some people, but it does not slow or stop ALS/MND itself.”

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 Vent

✓Supports this

“Invasive ventilation brings a higher level of ongoing care, with trained caregivers and regular attention to the tube and airway.”

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 Decision

Supports a claim in this answer

Talking about invasive ventilation proactively, before an emergency, helps keep the decision the person's own

✓Supports this

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

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 ALS

✓Supports this

“Invasive ventilation can add time for some people, while ALS/MND carries on progressing.”

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 Vent

✓Supports 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.”

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 ALS

✓Supports this

“Talking about this and recording your wishes before a crisis means they can be known and taken into account.”

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 ALS

Further reading

Why deciding and recording wishes ahead of time helps

Further reading

A decision-support perspective on approaching the tracheostomy decision

Further reading

A decision-support perspective on the trade-offs people consider

Further reading

A decision-support perspective on the daily care and family impact

Further reading

A decision-support perspective on tracheostomy and planning ahead