A tracheostomy is a small opening that is surgically created in the windpipe (trachea) to give someone an alternate airway for breathing. In a process sometimes called a “trach and vent,” someone with a disease that severely affects their breathing – such as amyotrophic lateral sclerosis (ALS) – will receive a tracheostomy that is then connected to a ventilator. This is also known as “invasive ventilation,” and is used when someone is no longer able to breathe on their own or, in some cases, due to excess secretions of mucus in their airway that they can’t clear effectively.
Facing the decision to undergo this invasive ventilation procedure is a reality faced by many people with ALS. The surgery itself is a relatively short and simple procedure – but life afterward involves many challenges.
- 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.
- 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.
- While some US health insurers may cover the procedure itself, paying the extremely high cost of caregiving is almost always up to the individual.
For professional in-home care, this could mean a yearly cost of hundreds of thousands of dollars or more. 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. This means that for most people with ALS who undergo the procedure, the burden of caregiving will fall on their family or friends. 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.
Helping People with ALS
No one who has never faced this choice can really know what’s like to go through it. However, Jennifer Scalia, CNP and Darlene Sawicki, NP, have spent many years supporting people going through this decision-making process as Nurse Practitioners at the Massachusetts General Hospital Healey Center for ALS (MGH). In an interview with the ALS Therapy Development Institute (ALS TDI), they emphasized that talking about tracheostomies is one of the most sensitive – and often difficult – conversations they have with the people they are caring for.
“When I talk to the patients, I say, respectfully, that I understand what our conversation represents,” says Darlene, “but I don't know what it means, because I don't have ALS, and I'm not walking in your shoes. I say to them, 'If you're going to go on to a trach, your designee or your loved one or whomever [may] have to stop their life so they can care for you, because there's no vacation days. 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.’”
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. 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. 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.
“Having a pulmonologist and neurologist and any nurses or nurse practitioners come together to talk about what living with a trach and vent will be like is really important because it’s a complete game changer,” says Jennifer. “Ultimately, it's always their decision, but we want to give them as much information as possible beforehand.”
The Challenges of Life with a Trach and Vent
Darlene also says that it’s important to note that the procedure does not halt the progression of ALS. While it can keep someone in danger of respiratory failure alive, people with a trach and vent will continue to lose motor function. Besides needing constant care, they will also face new mobility challenges given their reliance on constant ventilation. People with tracheostomies must also go on a feeding tube if they were not already.
Because of the specialized care needed after the procedure, every time they go to the hospital, they will need to be seen in the Intensive Care Unit. Given these circumstances, she says it’s important for people to carefully consider how they feel about the procedure – and share their wishes with their care team and family.
“You really have to ask yourself,” she says, “does this align with you are, with what you want from your life? What do you want for the people around you? Are you a big traveler? Do you live in a walk-up? Do you have people that can be with you 24/7? You always want to be proactive in these discussions and not reactive”
Choosing if a Trach and Vent is Right for your Life
Only a small number of the people receiving care for ALS at MGH end up opting for a trach and vent – Jennifer estimates around 2-3%. She says they do so for a variety of reasons. Some want to make sure they are able to reach certain milestones, like watching a child graduate college. Others simply believe their quality of life is still high, and that they are not ready to die.
Still, Darlene and Jennifer say they’ve seen many people go on to do very well after going through the procedure. These include people with large families that were able to share the burden of their around-the-clock care or those with the means to pay the high cost of care. However, Darlene says each person’s situation is unique, and it’s important to consider all of the benefits and challenges before deciding if a trach and vent is right for you.
“I ask people after they get a trach and vent,” she says "‘did I explain everything well enough? Do you feel like that prepared you?’ And every single one of them tells me, ‘there is no way you could have prepared me for this. There is absolutely no way.’”
“I also ask if you knew what you knew now,” she adds, “would you still have gone through with this? I would say about 50% of them say, ‘no, I would I would not do this if I knew what I know now.’ But also, 50% say yes.”
This is part one of a two-part series on invasive ventilation for ALS. To read about life after the procedure from the perspective of someone living with ALS, click here.
What to do Next:
