“ICU says, ‘no hope’ and ‘too weak to wean’ off the ventilator — Here’s why they might be wrong and what you can do about it.”

My name is Patrik Hutzel from intensivecarehotline.com, 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, even if you’re not a doctor or a nurse in intensive care.

So, today’s question comes from Pamela, who writes:

“Hi Patrik,

I want to give you an update about my husband who’s in ICU. As of yesterday, they told me that my husband cannot get better, that he’s getting weaker inside, and they can’t wean him off the tracheostomy or the ventilator. They’re telling me there’s no hope for him.

They want to send him to a long-term acute care facility (LTAC), but so far can’t because they have to keep him restrained since he pulls on the ventilator. They also told me that he wanted to die, but when I asked him directly, he shook his head no. He wants to live and he’s fighting.

I just don’t understand what’s going on except that they say he’s too weak. I want to bring him home with a tracheostomy and ventilator, but they say insurance won’t pay for that and that it would be too hard to find the service anyway.

They keep changing their minds about what to do with him, and I’m not sure they’re doing any proper weaning at all. He’s been in bed for over 30 days, but when he’s awake and not sedated, he’s happy to see me and wants to get better.

Can you please help?

From, Pamela.”

Well, here’s my answer. Pamela, this is such a heartbreaking and unfortunately very common situation in intensive care. When ICU team say, “There’s no hope,” “Your husband’s too weak to wean,” “They can’t get better,” “Your husband won’t have any quality of life, if he does survive, it’s in his ‘best interest’ to stop treatment,” they are subjective opinions, not facts.

First question I always ask is, what are they doing to help him to get stronger and better? Are they doing daily spontaneous breathing trials (SBTs)? Are they getting him out of bed into a chair or using physiotherapy? If the answer is no to all of that, then, the question is why? Far too often ICU teams label someone as unweanable when in reality they’re simply not doing enough active rehabilitation or proper ventilator weaning.

Also, one thing that is sorely missing from your email is that you do not have access to the medical records. You do need access to the medical records. It’s the number one thing you need in a situation like that. I don’t understand why this is not the default position for families in intensive care. Without access to the medical records, you will fight a very hard battle here because you can’t really verify what they’re saying is true.

Also, why are they restraining him? That is very unprofessional. I do believe he’s not getting proper care, and because he’s not getting proper care, that’s why they potentially have to restrain him. Think about that, restraining, imagine you’re tied down to a bed, you’re critically ill and someone is tying you down. That’s very inhumane, it’s very inhumane, so get access to the medical records first and foremost.

While the ICU team might be saying there is no hope, they’re trying to discharge him quickly. ICU beds are expensive and in high demand, so they may be under pressure to free up a bed. They assume that once a tracheostomy is in place, progress stops, which is false. Many patients do wean successfully with the right care, with the right approach, with the right mindset. They’re not offering alternatives like specialist home ventilation nursing services like Intensive Care at Home.

So, what do you need to do? Get access to the medical records. That’s a right, not a privilege. Ask for a clear weaning plan. It should include daily assessments, ventilator adjustments, mobilization goals, weaning goals. Ask for sedation to be minimized. The more awake and engaged your husband is, the better the chances of weaning.

Also, what you need to ask is, what are they doing exactly to wean your husband off the ventilator? They don’t seem to have a plan. Get independent clinical opinion. That’s exactly what we do at intensivecarehotline.com. We can review the ventilator setting, blood gases, and medical records to determine if your husband is truly too weak or if the ICU just isn’t trying hard enough.

Keep in mind, when we look at medical records, they’re probably not even telling you half of what’s going on. When we look at medical records, we see so many more things. When we talk to doctors and nurses directly in intensive care, you will see that I will start asking questions that you haven’t even considered asking but must be asked when you have a family member in intensive care.

Because 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.

Just keep in mind as well, your husband might still be on inotropes. If he’s still on inotropes, that’s also a game changer. This is what I’m saying, you don’t know what you don’t know, and you need an expert to look at everything and ask the right questions, and that’s what we do here at intensivecarehotline.com.

Next, explore home care options with tracheostomy and ventilator. Many families and ICUs still don’t know that our service intensivecareathome.com exists and provides 24/7 intensive care nursing at home, allowing patients to live with ventilator safely outside of ICU.

At Intensive Care at Home, patients are much safer because it’s a much less infection risk, much more comfortable, surrounded by families, and often make much better progress towards ventilator weaning at home because they’re in a familiar, family-friendly, and holistic environment.

We have many clients who were told in ICU there’s no hope in ICU, only to be successfully discharged home, have quality of life at home, and living a much better quality of life and sometimes being weaned off the ventilator, or at least have times off the ventilator during the day.

Also, let’s look at the truth about “insurance won’t pay.” Hospitals often say this out of ignorance because they don’t understand the funding models themselves or simply don’t want to lose the bed and the revenue.

In many cases, insurance, NDIS (National Disability Insurance Scheme) in Australia or government funding can be arranged for 24/7 intensive care nursing at home. We can guide you through this process at intensivecareathome.com, where we’ve helped so many families secure funding for home ventilation, tracheostomy, and for Intensive Care at Home.

Just keep in mind, an ICU bed costs $5,000 to $6000 per bed day. Intensive Care at Home is approximately half of that. So, an insurance actually will have an interest in cutting their cost to about 50%.

So, in summary, Pamela, your husband shaking his head no when asked if he wants to die says it all. He wants to live, that means he deserves full evidence-based ICU care, and also, a genuine attempt at rehabilitation. Don’t let the ICU dictate hopelessness. You need an independent advocate and a clear weaning and care plan, including home care if that’s where it’s going.

Contact us at intensivecarehotline.com so we can review your husband’s medical records, talk to doctors and nurses directly, and turn the dynamics upside down and in your favour, and obviously, we can help you with 24/7 Intensive Care at Home as well.

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.