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If you want to know how to handle the situation when your mom is in ICU with ARDS, which is lung failure and dementia, stay tuned. I’ve got news for you.

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

Today, I have an email from Jonathan who says,

“Hi Patrik,

My mother has been in ICU since January 20th, 2025, with ARDS, which stands for acute respiratory distress syndrome, also known as lung failure. She was treated with antibiotics for a UTI, which is a urinary tract infection, blood infection, and pneumonia.

She has been on the ventilator from the first day for low oxygen levels and high CO2 (carbon dioxide). She has comorbidities, including two stage 4 pressure ulcers on her back. She’s got dementia and third-space fluid buildup in several locations. The ICU team does breathing tests each day to extubate but hasn’t seen a good response yet.

About five days ago, she went eight hours breathing, the next day six hours breathing, and in the past few days are less than a minute before going back to assisted ventilation breathing. She’s awake, eyes open, not appearing to be in pain, and her blood pressure, pulse oximeter, and testing has somewhat stabilized electrolytes, but full blood count results indicate weak red blood cell levels. No plasma has been given.

I am pressured daily to let her go peacefully with pain management to start before they remove the ventilator, and they say she will likely pass within a few hours. The ICU doctors say there’s a risk of VAP (ventilator-associated pneumonia) or other issues with her current poor health are not surmountable and increase daily if on the ventilator.

I’m reluctant to remove the ventilator for my mom, yet I’m in hopes she would regain the desire to start breathing on her own, but they say the dementia likely is causing brain signals to be weak for stimulating the diaphragm to take breaths. Since her eyes are open, she’s salivating, and she responds to my touch or if I do suctioning, I know she’s still aware enough to see me, etc., but I can’t communicate with her to be sure of much more.

The doctors keep saying that the outlook is poor, and that pain may exist, but we can’t tell as the tube prevents vocalizing sounds to convey this. I’ve been pushing back on their wishes to limit or eliminate ventilator support and terminate life support because of the 10 to 14-day limit. They say ventilation usually follows for a successful outcome.

Backstory. Eight months ago, she was in the same ICU, six days on the ventilator, and recovered to home care, and back to baseline within one month. Thus, ultimately, we might win a battle but won’t win the war, as it won’t make her live much more. In my mind, I’m willing to hold off on the 14-day warning so long as I see her awake and she’s interacting with me.

As I’m the only child and proxy, I will have to make decisions and be her advocate, as I’ve done for four years with dementia and other medical issues like the pressure ulcers, wound care. It’s not going to be easy to let her go. I’ve been reading through your online materials, trying to grasp at straws of optimism for a possible turn of events, getting off the ventilator even after 11 days on it now.

Am I backing her into a corner of suffering while I resist the doctor’s advice to go with morphine and removing ventilation support? I’m sure there’s more to consider, but I’m overwhelmed with the idea I’d be pulling the rug out when she may regain the strength or brain signals to get back to breathing without the ventilator. Thank you for your website and your time.

From,
Jonathan.”

Jonathan, I’m very sorry to hear what is eventuating here with your mom. Let’s break it down sort of step by step. She’s in the ICU with ARDS. She’s on a ventilator. She’s in an induced coma. She’s got dementia. She’s got pressure sores on her back, but on the other hand, she’s also come out of a similar situation six months ago, and she went back to baseline. So, that’s a positive here. She has passed some spontaneous breathing trials for hours on end. However, then she stopped passing those spontaneous breathing trials. Interestingly enough, why did she stop passing the spontaneous breathing trials? Are they sedating her more? Are you having access to the medical records to get a second opinion? Because that’s what we can help you with. We look at the medical records, and we can very quickly tell you what is happening, because, at the moment, you don’t really know what’s happening.

The biggest challenge for families in intensive care is that you don’t know what you don’t know. You don’t know what to look for. You don’t know what questions to ask. You don’t know your rights, and you don’t know how to manage doctors and nurses in intensive care. That is exactly what you’re up against now.

When hemoglobin is low, which is also something you’re describing, there’s also a much higher chance of people staying on the ventilator because if hemoglobin is low, there’s not enough oxygen that can attach to red blood cells and improve oxygen delivery to all organs, including the lungs. So, no blood transfusions have been given. So, what is her hemoglobin level, and does she need a blood transfusion?

“The pressure daily to let it go peacefully with pain management.” Well, if you’re doing that, I argue that could be perceived as euthanasia. Euthanasia is hastening death and that is illegal, you have to think about that. Is your mom a religious person? Are you a religious person? Can you do that from a moral, ethical, or religious point of view? I can’t answer that question for you, but from my point of view, it is euthanasia, and euthanasia is illegal.

“There’s a risk of VAP (ventilator-associated pneumonia)”. Absolutely, there is a risk of that, like with anything. A ventilator, on the one hand, saves lives. On the other hand, it comes with risks attached to it, and one of them is ventilator-associated pneumonia.

“They’re saying that the current poor health is not surmountable, i.e., she’s not going to improve) according to them.” Well, here’s the bottom line. If you give consent to a tracheostomy, assuming she can’t come off the ventilator, you’re giving her a chance. If you are not consenting to a tracheostomy and you let her die, you’re not giving her a chance. Either scenario might or might not be in the best interest of your mom, depends on what she would want in a situation like that. Do you know what she wants? Have you discussed this with her before she had dementia? That’s really what it comes down to, she had dementia six months ago from what I’m reading from your email. She came off the ventilator then, why wouldn’t she come off the ventilator now?

Here’s another thing that you haven’t mentioned, but I need to point that out to you. They are putting pressure on you to make a decision one way or another. I would put the pressure back on them, and I would ask them, what are you doing to get my mom off the ventilator? Show me that you’re doing everything you can beyond the shadow of a doubt to get my mom off the ventilator.

The first question that I have here is, you’re saying she passed some spontaneous breathing trials, but then she stopped passing them. Did they sedate her? That’s why you need to get access to the medical records. Everything needs to be broken down in much detail because if you’re not doing that, you don’t really know what’s happening.

You are saying that the doctors say the outlook is poor and pain may exist, but we can’t tell as the tube prevents vocalizing sounds to convey this. The tube might prevent it, but also sedation might prevent that. Sedation such as morphine, midazolam, fentanyl, propofol, Precedex. Fentanyl and morphine are opiates, but they still have a sedative effect so that is actually what might prevent her vocalizing. Also, you can ask her, ask her if she’s in pain. She can squeeze her hands. If she’s squeezing once, let’s just say that’s a yes. If she’s squeezing twice, that’s a no. You can start communicating with her that way. Be creative.

Like I said, you need to ask the question, what are you doing to get my mom off the ventilator beyond the shadow of a doubt? I’ve made a video about that, “How to wean a critically ill patient off the ventilator and the breathing tube?”. I would highly recommend that you watch the video or read the blog because you got to question everything.

“Eight months ago, she was in the same ICU, six days on the ventilator, and recovered to home care and baseline within a month.” Why can’t she do the same now? I understand it is difficult for you to make those decisions. I understand that you are the caregiver, and you’re obviously taking your responsibility extremely seriously and you are looking at online materials to grasp at straws and looking at anything positive. Yes, I am positive here. I can’t make a call for you, but keep in mind, 90% of intensive care patients survive. There’s research out there to back that up. The question is, why would your mom be in the 10% of patients not surviving? Why is your mom not surviving? The odds are in her favor, I argue they need to do all the right things, rather than focusing on end-of-life talk, let them focus on weaning her off the ventilator too. Let’s change the conversation.

If she can’t be weaned off the ventilator and she’s off all sedation, then a tracheostomy might be the next step to give her time, or if you think she wouldn’t want that, maybe then let’s look at end-of-life. But there’s plenty of time to talk about end of life. What’s the urgency to kill someone? Where is the urgency to kill someone? Please explain that to me. So, I hope that helps you understand how to make more confident decisions, but we can help you with a second opinion by either talking to doctors and nurses directly or by looking at the medical records, or ideally, do both of that. Do a combination of it. I hope that helps.

I have worked in critical care nursing for 25 years in three different countries. I have also worked as a nurse manager in critical 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. You can verify this on the testimonial section at intensivecarehotline.com. You can  verify it on our podcast section at intensivecarehotline.com where we’ve done client interviews, our clients share how we helped them saving their loved ones’ lives.

You can join a growing number of members and clients that we have helped over the years. Hundreds and hundreds of them. Our advice is absolutely life-changing because your biggest challenge is that you don’t know what you don’t know. That is your biggest challenge and we shed light on that extremely fast. Things intensive care teams will hide from you they think you don’t understand, that’s why they’re not explaining to you in the first place. Of course, you’ll understand if someone sits down with you and explains it to you. You wouldn’t be here if you didn’t want to understand.

That is why I do one-on-one consulting and advocacy over the phone, Zoom, Skype, WhatsApp, whichever medium works best for you. I talk to you and your families directly. I talk to doctors and nurses directly. I handhold you through this once in a lifetime situation that you simply cannot afford to get wrong. When I talk to doctors and nurses directly, I ask 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 if 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. 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 will have access to me and my team via email and in the membership area, 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 have personally written and recorded. The access to all of that will help you make informed decisions, have peace of mind, control, power, and influence, and making sure your loved gets best care and treatment always.

All of that, you get at intensivecarehotline.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected] 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.