“ICU says my husband can’t be weaned off the ventilator and the tracheostomy — What are our options?”

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

So today, I have an email from one of our clients, Pamela, who says:

“Hi Patrik,

Can we please get on another call? It’s really an emergency. The ICU doctors are saying that my husband only has a very slim chance of being weaned from his ventilator and tracheostomy. They don’t think they can wean my husband off a ventilator. He’s been on a ventilator for 45 days now, and they don’t think he can be weaned off at all.

Many different ICU doctors and ICU nurses come and go. There’s no consistency. They want to send him to rehab, but we don’t think that’ll help. So, they’re also talking about palliative care. I just don’t want to do that. Please help. I want you to call the doctors and ask them some questions.

Thank you for all your team and you do.

From, Pamela.”

So, thank you, Pamela for reaching out again and I’m so sorry to hear about your husband’s situation. Unfortunately, this is something we hear quite frequently from families in intensive care. ICU teams giving up too early and pushing for “palliative care” when a patient has been ventilated long-term and they don’t think weaning is possible.

Your husband has been ventilated for 45 days with a tracheostomy and now, ICU is saying they can’t wean him off, that he has a “slim” chance. But let me tell you, Pamela, that’s not necessarily true. Many of our clients have been in exactly the same situation.

With the right approach, the right environment, the right timing, the right advocacy, the right consulting, they have either been successfully weaned or discharged home safely with a ventilator and tracheostomy, with our service, Intensive Care at Home, and you can find more information at intensivecareathome.com.

Now, you mentioned there’s no consistency with the ICU doctors and ICU nurses, and that’s a red flag. When ICU staff rotate constantly, there’s no continuity of care. It’s very hard for your husband to make progress. We see this all the time. It leads to poor communication, a lack of coordinated care, and premature conclusions that “nothing” more can be done instead of making sure your husband gets best care and treatment.

So, let’s look at some options here. Definitely do not rush into palliative care or let alone go to a rehab facility, which is not really an option if he’s got a ventilator and a tracheostomy anyway. Palliative care is a euphemism most of the time, especially in ICU and it often means withdrawal of life support, and that’s a decision that can’t be reversed.

Once your husband has gone, he’s gone. Do not make decisions today that you might regret in 12 months’ time. It doesn’t sound to me like you will, but just for anybody else watching this, a lot of families in intensive care make end of life decisions today that they regret in 12 months’ time, and they have second thoughts, “I think,”  “What if?” That’s a massive red flag; it’s a massive concern. It can be very traumatic.

Well, so before you agree to anything, we need to assess whether your husband could be managed long-term outside of ICU, either in a high dependency or step-down ICU environment as the next step, or even better, of course, at home. Maybe step down can be used as an intermediary step before going home with Intensive Care at Home. So, consider a discharge home with Intensive Care at Home.

With Intensive Care at Home, we provide 24/7 intensive care nurses with CCRNs for patients on invasive or non-invasive ventilation, including tracheostomy care. Patients on a ventilator at home are much safer due to a much lower risk of hospital acquired infections. They have a much better quality of life because they’re surrounded by family, they’re in their own home, in the comfort of their own home, and most of all families and patients regain control and peace of mind compared to the stressful ICU environment.

We follow the evidence-based Mechanical Home Ventilation Guidelines and provide the same level of care you would expect in an ICU but in the comfort of your own home.

Next, get a second opinion. The next step is for us to speak directly with the ICU team, to ask the right clinical questions, questions families in intensive care often don’t know how to ask. We can clarify whether your husband truly can’t be weaned or whether it’s simply a matter of ICU resources, staffing, mindset, or lack of experience with long-term ventilation.

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.

So, Pamela, please do not give up hope. The fact that your husband has made it this far, 45 days on a ventilator with a tracheostomy shows resilience and potential for stability. What’s often missing is a clear plan and continuity of care, a motivated and positive team, and that’s where we come in.

Because, if you book a call with me and my team at intensivecarehotline.com, we can discuss your husband’s current situation, or your family member’s situation if you’re watching this, in detail and we can liaise with the doctors to advocate for your family member’s best interests and best care and treatment.

The biggest challenge for families in intensive care is 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.

So, if you are in a similar situation right now and the ICU is talking about palliative care, end of life care, or no chance of weaning, reach out to us at intensivecarehotline.com. Call us on one of the numbers on the top of our website or send us an email to [email protected] so we can help you make informed decisions, have peace of mind control, power, and influence, making sure your loved one gets the best care and treatment always. Also, check out our sister side at intensivecareathome.com for Intensive Care at Home.

I have worked in critical care nursing for 25 years in three different countries where I worked as a nurse manager for over 5 years in intensive care. I’ve 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 with our consulting and advocacy because of our insights. You can verify that on our testimonial section at intensivecarehotline.com. You can verify it on our intensivecarehotline.com podcast section where we have done client interviews because our advice is absolutely life changing.

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.

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 best care and treatment always. 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.

That’s why I do one on one consulting and advocacy over the phone, Zoom, WhatsApp, whichever medium works best for you. 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. 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 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 eBooks and 21 videos that I have personally written and recorded. 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 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.