My name is Patrik Hutzel from intensivecarehotline.com, and this is another quick tip for families in intensive care.

Here at intensivecarehotline.com, we instantly improve the lives of families of critically ill patients in intensive care, so that you can make informed decisions, have peace of mind, control, power, and influence — even if you’re not a doctor or a nurse in intensive care — making sure your loved one always gets the best care and treatment.

Today I have a question from Emmy, who says:

“Hi Patrik, 

Spontaneous CPAP — is it possible to take it off? What happens if I want my mom taken off that machine with a breathing tube?” 

From, Emmy

Before I answer this question, you might wonder what makes me qualified. I have a YouTube channel where I answer questions from families of critically ill patients in intensive care. I have worked in critical care nursing for over 25 years in three different countries, where I worked as a nurse manager in intensive care for over five years, and I have been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com.   I can very confidently say that we have saved many lives for our clients in intensive care, and you can verify that in our testimonial section or on our podcast section, where we have done client interviews.

Emmy, thank you for sending this question through. You are asking exactly the right question, and I’m going to give you a complete answer, because you deserve the truth, not a watered-down version of it. If you’re watching this and your loved one is in the ICU (intensive care unit) on a ventilator, whether it’s spontaneous CPAP or any other ventilation mode, stay with me, because this video is for you.

What Is Spontaneous CPAP and What Does It Mean?

Let me explain Spontaneous CPAP in plain language. The short version is SCPAP, but it stands for spontaneous CPAP (continuous positive airway pressure). It is a mode of mechanical ventilation. When your mom is on SCPAP, she still has a breathing tube in place, also called an endotracheal tube, and she’s still connected to the ventilator, but the key word here is spontaneous. It means your mother is initiating her very own breaths. The ventilator is not triggering the breaths for her; she is initiating and doing that herself. The machine is applying a constant pressure, called CPAP, to keep the airways open and to give a small amount of support to each breath.

Think of it like this: instead of the ventilator being the engine driving everything, your mother’s own respiratory effort is now in the driver’s seat. The machine is more of a support system in the background.

SCPAP is commonly used as a weaning mode. It is a test — it is the ICU team’s way of saying, “Let’s see how much she can do on her own.” But this is critical: SCPAP does not mean the breathing tube has been removed. The tube is still in. She is still ventilated.

The key point to remember here is: SCPAP means the breathing tube is still in place, but the patient is initiating her own breaths with ventilation support. It is not the same as breathing independently without the machine.

So, Can Emmy Now Ask to Have the Breathing Tube Removed?

Emmy is asking, “Can I ask to have the breathing tube taken off?” The short answer is yes, you can ask. More than that, if you are your mother’s medical power of attorney or designated power of attorney for medical decisions, you have the legal right to make decisions about her treatment on her behalf.

But before you make any decision, before you sign anything or agree to anything, I need you to understand what you are actually asking for, because removing the breathing tube can mean very different things depending on your mother’s situation.

Here’s the issue: we get so many questions from families in intensive care, and the questions make a lot of sense at the time, but there’s so much incomplete information. I come back to this — the biggest challenge for families in intensive care is simply that they don’t know what they don’t know. They don’t know what to look for, they don’t know what questions to ask, they don’t know their rights, and they don’t know how to manage doctors and nurses in intensive care.

This is what I see every single day when we get questions. Families give very incomplete situations, and the only way you can find out what is really going on is by getting a second opinion, by talking to us, getting access to medical records, and getting on a consulting call— I’ll come to that a bit later. I just thought I needed to give you this insight: questions here are often very incomplete, because families do not understand the whole context in intensive care.

Extubation Versus Withdrawal of Life Support 

There are two completely different scenarios here and confusing them could be the most consequential mistake of your life, Emmy. Let me be very clear.

Scenario one: planned extubation as part of weaning. If your mother is improving, Emmy — if her underlying condition is getting better, her oxygen is stable, she’s becoming more alert, she’s tolerating SCPAP well — then removing the breathing tube is the next step forward. It is called extubation. It is a planned, intentional step towards recovery. The goal is for her to breathe independently once the tube is out. This is what every ICU family hopes for, and if this is where things are heading, you want to be there, you want to be informed, and you want to support the process.

Scenario two: removing the breathing tube when she is ventilator dependent. If your mother is not improving, if the ICU team has raised concerns about her prognosis, if she has been on the ventilator for weeks without significant progress, if her underlying condition is severe, then asking to remove the breathing tube becomes a discussion about withdrawing life-sustaining treatment. In this scenario, removing ventilator support would very likely result in your mother dying, and while that may be a compassionate choice in some circumstances, especially if it aligns with your mother’s own wishes, it is a decision you must never make without fully understanding the consequences.

This is the most important distinction in this video: extubation as part of weaning is a step towards recovery; removing the tube from a ventilator-dependent patient can be withdrawal of life support. Know which situation your mother is in before any decision is made, and if you are agreeing to withdrawal of life support, make sure that is what your mom wants. That is very important.

Here is what I see happen far too often: families are told there is no hope, or that further treatment is futile, and they feel pressured to agree to withdrawal without fully understanding the clinical picture. They don’t have the medical records, they don’t know what the blood gases show, they don’t know whether the weaning plan has actually been tried systematically and successfully. This is why I built intensivecarehotline.com because families deserve a fully informed advocate.

Your Rights as a Family Member or Designated Power of Attorney in ICU 

Let me be very direct with you about your rights, because the ICU team wants you to believe you have none.

You have the right to full, honest, clear information about your mother’s condition, diagnosis, prognosis, and treatment plan. You have the right to a family meeting with the intensivist, the ICU specialist doctor, at any time, with an advocate present. You have the right to ask for a second opinion from another specialist or from an advocate. If you are your mother’s medical power of attorney or designated power of attorney, you have the legal right to make decisions on her behalf, in line with her documented or discussed wishes. You have the right to refuse or withdraw consent for any treatment. You also have the right to insist that treatment continues if you believe it is in your mother’s best interests and there is reasonable clinical hope. You have the right to access all medical records  on her behalf. And you have the right to bring in an advocate.

These rights all exist, they are real, and you should use them. ICU teams are very good at pretending they can do whatever they want and that you don’t have any rights, and nothing could be further from the truth, because in the ICU, most of the time these are all life-or-death decisions. 

Treatment Options for Emmy’s Mother

Without knowing the specific reason your mother is in the ICU, Emmy, let me walk you through the realistic range of options.

Option one: continue weaning towards full extubation. If your mother is tolerating SCPAP and showing signs of improvement, the team should be progressing towards a spontaneous breathing trial and then extubation. Ask them: what is the weaning plan, what are the targets, when would you consider a trial off the ventilator? Here’s what to look for — oxygen levels: she should be breathing on room air or 30–35% FIO2 (fraction of inspired oxygen) maximum; PEEP (positive end-expiratory pressure) of 5 to 7; and pressure support less than 10 or 8, with good tidal volumes and a normal respiratory rate; normal arterial blood gases with normal SPO2 (oxygen saturation) levels and normal PCO2 (partial pressure of carbon dioxide) levels. She also needs to obey commands and have a good cough — that’s when the breathing tube can come out successfully.

Option two: tracheostomy for prolonged ventilation. If your mother has been on the ventilator for one to two weeks and is not yet ready to be extubated, the team may recommend a tracheostomy. This is a surgical opening in the neck with a tracheostomy tube. It is more comfortable for long-term ventilation, it reduces sedation requirements, it can allow your mother to potentially speak, eat, and be more mobile, and most importantly, it opens the door to going home.

Option three: palliative care or comfort-focused care. If recovery is not expected and your mother’s wishes align with comfort-focused care, a palliative care approach or end-of-life care approach is a valid, compassionate option. The breathing tube can be removed as part of this process, with medications to ensure your mother is not in distress.

Option four: long-term ventilation at home. This is the option I want to make sure every family knows about, because most ICU teams will not bring it up proactively. If your mother requires long-term ventilation, whether invasive with a tracheostomy or non-invasive through a mask, but is otherwise medically stable, she may be able to come home. That’s why I want to talk about Intensive Care at Home, and you can find more information at intensivecareathome.com

With Intensive Care at Home, we are a nursing provider that provides intensive care at home with 24/7  intensive care nurses for ventilator-dependent and tracheostomy adults and children. Currently we operate all around Australia, in all states and territories, in all major capital cities, and in all regional and rural areas. But even if you’re in the United States, in Canada, or in the UK, I encourage you to reach out to us if you are interested in intensive care at home, because we can help you there privately.

We support patients with invasive mechanical ventilation with a tracheostomy, non-invasive ventilation such as BiPAP (bilevel positive airway pressure), CPAP, APAP (automatic positive airway pressure), VPAP (variable positive airway pressure), complex airway and tracheostomy management, and palliative and end-of-life care at home. Keep in mind that we can bring the intensive care unit into your home with 24-hour nursing care. Think of the flying analogy: you wouldn’t fly an airplane with a cabin crew and not a pilot. Your ventilator-dependent family member needs a critical care registered nurse at home — not just a general nurse or a carer — to safely manage their care at home, to safely transition from ICU to home, as a genuine alternative to a long-term stay in intensive care. Once again, you can find more information at **intensivecareathome.com**.

Why You Must Get Access to All Medical Records

I cannot stress this enough: before you make any decisions about your mother’s treatment, which in essence can be life or death, before you agree to anything, before you refuse anything, you need the medical records.

The medical records will tell you the exact diagnosis and what caused your mother to be ventilated, what her ventilator parameters and blood gas results show, whether she is improving or not, whether a systematic weaning plan has been documented and followed, what sedation she’s receiving — sometimes sedation itself is preventing weaning progress — what the ICU specialists have documented about prognosis and goals of care, and whether your mother’s own advance care wishes are recorded.

Without this information, you are navigating one of the most important decisions of your life without a map. With it, you can ask the right questions, hold the right conversations, and make truly informed decisions. You have a legal right to access medical records in Australia, in the US, in the UK, in Canada, in Ireland — anywhere, really. Request them in writing. Do it today.

If your mom needs long-term ventilation, with or without a tracheostomy, and cannot currently be weaned, I want you to know that the ICU is not the only option. Intensive Care at Home exists precisely to keep ventilator-dependent patients out of the ICU, predictably and permanently, in the comfort of their own home. Ask your ICU team: is home ventilation an option for my mother? If they hesitate or say they don’t know, contact us directly at intensivecareathome.com. We can assess the situation and advise whether home care is clinically feasible, and we can talk to the ICU team directly, of course.

How Can Intensivecarehotline.com Help You Right Now?

Emmy, and everyone watching this — if you are trying to understand what is happening to your mother, if you are being asked to make decisions you don’t feel ready to make, if you feel like the ICU team is not giving you the full picture, I want you to call us right now at ntensivecarehotline.com  Call us on one of the numbers at the top of our website, or simply send us an email to [email protected], because here at intensivecareathome we work alongside families like yours every single day. We review medical records, we attend family meetings, we question treatment decisions, and we advocate for your loved one’s best interests.

Think of it this way: you wouldn’t fly an airplane with a cabin crew and not a pilot. When it comes to navigating a complex ICU situation and admission, you shouldn’t try to do it without an experienced critical care nurse specialist in your corner.

Summary

So let me wrap this up for you, Emmy, and for everyone watching. SCPAP is a ventilator mode where your mother initiates her own breaths, but the breathing tube is still in place. You can ask for the breathing tube to be removed, but make sure you understand whether this is part of a weaning plan or a withdrawal of life support, and do not agree to a withdrawal of life support unless you fully understand what that means — that it’s irreversible, and that you and your family support your mother in her wishes.

You have rights in the ICU — use them. Get access to all medical records; do this today. Ask the ICU team about the weaning plan, tracheostomy options, and long-term ventilation at home. If your mother needs long-term ventilation, go and check out intensivecareathome.com,  and if you need an advocate, call me at ntensivecarehotline.com.

You’re not alone, Emmy. Thousands of families in intensive care have navigated this. The ones who get the best outcomes for their loved ones are the ones who ask questions, get informed, and have support. Let us be that support for you.

If this video helps you, subscribe to my YouTube channel, go to intensivecarehotline.com for more resources, click the like button, click the notification bell, and share this video with your friends and family who have loved ones in intensive care. Leave your comments — I’ll read every one of them.

Until next time, I’m Patrik Hutzel, and I will see you in the next video.

I have worked in critical care nursing for 25 years in three different countries where I worked as a nurse manager for over five years in intensive care. And I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com. And I can very confidently say that we have saved many lives with our consulting and advocacy, because of our insights, and you can verify that on our testimonial section at intensivecarehotline.com and you can verify it on our intensivecarehotline.com podcast section, where we have done client interviews.  And because our advice is absolutely life-changing, right?

The biggest challenge for families in intensive care is simply that they don’t know what they don’t know. They don’t know what to look for, they don’t know what questions to ask, they don’t know their rights, and they don’t know how to manage doctors and nurses in intensive care. And that’s why we help you to improve your life instantly, making sure you make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets the best care and treatment always. And that’s why you can join a growing number of members and clients that we have helped over the years, saving their loved ones’ lives.

And that’s why I do one on one consulting and advocacy over the phone, Zoom, WhatsApp, whichever medium works best for you. And I talk to you and your families directly. I handhold you through this once-in-a-lifetime situation that you simply cannot afford to get wrong. And when I talk to families directly, I also talk to doctors and nurses directly, asking all the questions that you haven’t even considered asking but must be asked when you have a loved one critically ill in intensive care.  I also represent you in family meetings with intensive care teams.

We also do medical record reviews in real time so that you can get a second opinion in real time. We also do medical record reviews after intensive care, so, if, in case you have unanswered questions, if you need closure or if you are suspecting medical negligence.

We also have a membership for families of critically ill patients in intensive care, and you can become a member if you go to intensivecarehotline.com. If you click on the membership link or if you go to intensivecaresupport.org directly. In the membership, you have access to me and my team 24 hours a day in the membership area and via email, and we answer all questions intensive care-related. In the membership, you also have exclusive access to 21 e-books and 21 videos that I’ve personally written and recorded. And all of that will help you to improve your life instantly, make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets the best care and treatment always.

And all of that you get at intensivecarehotline.com. Call us on one of the numbers at the top of our website or simply send us an email to support at intensivecarehotline.com with your questions.

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Thank you so much for watching.

This is Patrik Hutzel from intensivecarehotline.com, and I will talk to you in a few days.

Take care for now.