Can My Husband Be Weaned Off the Ventilator After 30 Days in ICU? I’ll give you expert ICU advice today.

My name is Patrik Hutzel from intensivecarehotline.com, where 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, making sure your loved one always gets the best care and treatment, even if you’re not a doctor or a nurse in intensive care.

Today I have an email from one of our clients, Pamela, who says,

“Hi Patrik, 

My husband’s still in ICU, and they’re going to try to send him to a step-down ICU or to a high dependency unit. They’re having trouble finding a bed for him.  He’s been in the ICU for 30 days, and they’ve tried numerous times to wean him off the tracheostomy, but having difficulties because they say his body is too weak. They’re trying not to sedate him as much, but when he’s not sedated, he gets very agitated and frustrated. It is very hard to watch him like this. When he was fully awake one morning, I asked him if he was going to fight, if he wanted to fight, and he shook his head yes. 

Otherwise, I almost feel like we should stop, period. But then, because he’s so hard of hearing, I’m not sure he even understood what I was trying to ask him. I guess they’re going to try to continue weaning him off the tracheostomy, but then he’s off the tracheostomy for no more than 10 minutes, and he can’t breathe after that, and they have to put him back on it. One ICU doctor told me he only had a 50/50% chance. I’ve got more family with me now. We’re all trying to decide what to do. Please tell me if there’s anything you can do to help me and him. In Jesus’ name, I’m asking you for help.”

From Pamela

Thank you, Pamela. First of all, thank you for reaching out to me and thank you for being one of our members. I can hear the pain and the uncertainty in your message and I want you to know that you’re not alone in this incredibly difficult situation. Let me give you some guidance that can help you make informed decisions, have peace of mind, control, power, and influence, making sure your husband gets the best care and treatment during this critical time.

After 30 days in ICU with difficulty weaning off the tracheostomy, your husband is facing what we call difficult to wean or prolonged mechanical ventilation scenarios. This is more common than you might think, but it requires a very strategic approach.

There are several reasons why weaning is so difficult right now and why he can only tolerate 10 minutes off the ventilator.

Number one would be muscle weakness, also known as ICU-acquired weakness. After prolonged sedation and bed rest, his respiratory muscles become severely deconditioned. The diaphragm, your main breathing muscle, can lose up to 30 to 40% of its strength in just the first few days of mechanical ventilation. After 30 days in ICU and being ventilator dependent, this weakness becomes even more profound.

Number two, delirium and agitation. The agitation you’re seeing when sedation is reduced is likely ICU delirium, which affects 60 to 80% of ICU patients. This creates a vicious cycle. He needs less sedation to strengthen his breathing drive, but without sedation, he becomes agitated, which increases his oxygen demand and makes breathing even harder.

Number three, underlying medical conditions. Whatever brought him into ICU in the first place may still not be fully resolved, making independent breathing difficult.

Let’s look at critical steps the ICU team should be taking. Here’s what should be happening right now to maximize your husband’s chances of successful weaning.

Number one, optimal ventilator settings for weaning. The ventilator settings need to be carefully titrated to support your husband’s breathing while allowing his muscles to gradually strengthen. For example, pressure support ventilation or PSV. This mode should be used during weaning trials, typically starting at 10 to 15 centimeters of water and gradually reducing by 2 centimeters of water as tolerated, almost day by day if tolerated.

Next, PEEP, which stands for positive end expiratory pressure, usually maintained at 5 to 8 centimeters to prevent airway collapse.

Number three, spontaneous breathing trials. This should be done systematically, starting with 5 to 10 minutes and gradually increasing duration as his tolerance improves.

Important questions to ask the ICU team: What specific ventilator weaning protocol are they following? What parameters are they using to determine if he’s tolerating the weaning trials? What is his baseline? What is his current ventilator setting? How are they planning to gradually reduce ventilator support? What are his arterial blood gases like? What do chest X-rays look like?

Next, aggressive mobilization and physical therapy in ICU. This is critical and often overlooked. Your husband needs intensive physical therapy and mobilization while still on the ventilator. Early mobilization. He should be getting out of bed, sitting in a chair, and ideally standing or walking with ventilation support. Next, respiratory muscle training, specific exercises to strengthen the diaphragm and accessory breathing muscles.

Next, range of motion exercises to prevent contractures and maintain muscle function.

Next, occupational therapy to work on functional activities that improve overall conditioning.

Questions to ask: How many times per day does your husband receive physical therapy?  Is he being mobilized out of bed? If not, why not? Many ICUs do not provide adequate physical therapy, which dramatically reduces the chances of successful weaning. This is a game-changer for difficult-to-wean patients.

Next, managing delirium without heavy sedation. The agitation is a major barrier, but heavy sedation makes everything even worse. The ICU team needs to minimize benzodiazepines. These drugs such as midazolam, also known as Versed, worsen delirium and prolong mechanical ventilation. Use dexmedetomidine or Precedex instead if sedation is needed. It causes less delirium than other sedatives. Next, minimize opiates such as morphine, fentanyl, oxycodone, and so forth.  Because as a side effect, one of the side effects of these medications is respiratory depression. It’s often overused. Opiates are often overused in ICU and need to be minimized as much as possible. Ideally, they need to be stopped completely.

Next, non-pharmacological interventions: glasses, hearing aids crucial for your husband since he’s hard of hearing, reorientation, family presence, day and night cycle regulation are extremely important for your husband as well. A lot of the issues in the ICU stem from ICU patients not having a proper day and night rhythm. Patients sleep during the day, are awake at night. That’s not a good environment for recovery.

Next, treat underlying causes: pain, constipation, urinary retention, infection.

Next, your husband’s hearing impairment is especially important here. The ICU team needs to find ways to help your husband communicate and understand what’s happening. This might include getting his hearing aids into ICU if possible, using communication boards or writing materials, speaking louder and facing him directly, ensuring he can see a clock and a calendar.

Next, nutritional optimization. Adequate nutrition is critical for respiratory muscle recovery. Protein intake minimum 1.2 to 1.5 grams per kilo of body weight. Overall, calories meeting his metabolic demands without overfeeding, which increases CO2 (carbon dioxide) production, and monitoring for refeeding syndrome if he’s been malnourished. Plenty of studies have been done in the ICU that adequate nutrition is critical for healing and recovery.

Next, the importance of having access to all medical records.   Here’s something really crucial, Pamela. You need complete access to all of your husband’s medical records to truly understand what’s happening and make informed decisions. This includes daily progress notes from all doctors, nurses, physiotherapists, and so forth, nursing notes and vital sign flow sheets, ventilator settings and weaning trial documentation, lab results, pathology results, imaging reports, arterial blood gas results, physical therapy notes, medication administration records, fluid balance charts. Leave no stone unturned. The devil is in the detail.

Those records, for example, will reveal what exactly is preventing successful weaning, whether best practices for mobilization and delirium management are being followed, whether there are underlying issues not being adequately addressed, what the medical team’s actual plan is, not just what they’re telling you in brief conversations.

From my extensive experience after having worked in critical care nursing in three different countries for over 25 years, the ICU team is only telling you half of what’s going on. Once we look at the medical records with you, a completely different picture often emerges.

Here is how we help through consulting and advocacy because a consulting call with myself or with one of my team members will make a tremendous difference when we review your husband’s complete medical records and talk to you and talk to the ICU team and assess his current situation. We will identify gaps in care. Are they following evidence-based weaning protocols? Is he getting adequate physical therapy? Are there treatable causes of weaning failure being missed? Provide specific questions to ask. Armed with expert analysis of his case, you’ll know exactly what to question and what to advocate for.

We also facilitate a consultation with the ICU team. We can arrange a call with you and the ICU doctors to discuss your husband’s case, clarify the plan, and ensure all options are being considered. Having an ICU specialist advocate on your behalf will change the conversation dramatically and will change the dynamics in your favor.

Next, develop a comprehensive care plan. We outline exactly what needs to happen to maximize his chances of successful weaning. Many families find that after we get involved and review the medical records, talk to doctors and nurses directly, new options emerge that weren’t previously discussed and you didn’t even have on your radar. Sometimes it’s simply ensuring that proven interventions are actually being implemented consistently.

Let’s also look at the comment that you had from the ICU doctor, the 50/50 chance. What does it actually really mean? When an ICU doctor says your husband has a 50/50 chance of survival, you need to ask, a 50/50 chance of what exactly? Weaning off the ventilator? Surviving the ICU stay?  Returning to his previous functional status? Surviving the next 30 days? This matters tremendously because the answer determines what decisions make sense. Don’t let vague statements drive major decisions. Demand clarity and specifics. And also arm yourself with the right knowledge. 70 to 90% of intensive care patients survive their stay, so that means the odds are in your husband’s favor. Ask the question, what makes them think that the odds are 50/50?

Also, let’s address your communication challenge with your husband, because the question you asked him, “Do you want to fight?” is critically important, but you’re right to worry that he may not have fully understood due to his hearing impairment. Here is what I recommend: optimize communication conditions. Make sure he has his hearing aid or find alternative amplification. Reduce background noise as much as possible. Face him directly and speak clearly. Use written communication as a backup. Break down the question instead of one big question. Try: Are you in pain right now? Thumbs up, thumbs down. Do you understand where you are? Do you want us to keep trying to get you off the ventilator? Are you tired of fighting?

Next, you can involve the palliative care team, but it needs to be on your terms, because they are expert at facilitating these conversations and they can help ensure he truly understands what is being asked.

Now let’s look at step-down unit versus continued ICU care. The fact that they’re trying to transfer him to a step-down or a high dependency ICU unit despite ongoing weaning difficulties is concerning. You need to ask, what specific criteria does your husband meet for step-down or HDU transfer given that he can only tolerate 10 minutes off the ventilator? Typically, patients need to demonstrate more stability and weaning progress before step-down transfer. If they’re pushing for transfer due to bed availability, staffing shortages, etc., rather than his clinical readiness, this could jeopardize his recovery.

Let’s also look at long-term ventilation and long-term tracheostomy options, which you can find at Intensive Care at Home.com.  Here’s something, Pamela, many families don’t know about or completely miss. If your husband cannot be weaned from the ventilator or the tracheostomy, he certainly doesn’t have to stay in ICU forever. If you go to our other website, Intensive Care at Home.com we offer a long-term solution that can keep your husband out of ICU predictably and permanently if he requires long-term mechanical ventilation with a tracheostomy, ongoing ventilator management if weaning proves difficult or impossible, high quality end-of-life care  if you ultimately choose palliative care. We also provide tracheostomy care at home if your husband can come off the ventilator, and we also provide ventilator care, nursing care at home without a tracheostomy such as BiPAP or CPAP.

In essence, with Intensive Care at Home, we provide home-based ICU level care options that provide 24/7 specialized nursing care in your own home, ventilator management and weaning attempts in a comfortable environment, physical therapy and rehabilitation in familiar surroundings, better outcomes and quality of life compared to long-term stays in ICU, the ability for family to be present constantly and consistently, significantly lower infection risk than in a hospital setting.

Many patients who fail weaning in traditional ICU settings actually succeed when moved to home-based care because the familiar environment reduces delirium, family presence improves motivation and emotional well-being, individualized therapy schedules can be more aggressive, sleep quality improves dramatically, nutrition and overall care can be optimized.

Even if weaning ultimately isn’t possible, home-based ventilation with Intensive Care at Home dramatically improves quality of life compared to an ICU stay or institutional care, whether for months, years, or as palliative care options.

Next, your decision-making framework. Pamela, you’re facing the hardest decision a spouse can face. Here’s how to approach it. Continue aggressive treatment if he clearly communicates, he wants to fight, the medical team or the ICU team can identify specific treatable barriers to weaning, he’s making measurable progress even if slow, he hasn’t developed irreversible complications, he has acceptable quality of life potential if successful. Or consider transitioning to comfort care if he clearly expresses he’s ready to stop, he’s developing additional organ failures beyond respiratory that can’t be reversed, there’s no identifiable path to a meaningful recovery (and meaningful recovery means only in your eyes and in your husband’s eyes), or he’s suffering without adequate ability to control that suffering and he’s tired of suffering, his underlying disease is terminal regardless of ventilator management.

But here’s the key: you don’t have to make this decision right now based on incomplete information.  Immediate action steps now: Request access to all medical records immediately. You have a legal right to do so. Contact us at intensivecarehotline.com for a consultation where we review his complete medical records, provide specific analysis of his case, give you expert questions to ask the ICU team, arrange a joint consultation with the ICU team if needed, and develop a comprehensive advocacy plan.

Demand a family meeting with the ICU doctor, present and myself.  The pulmonologist managing ventilation weaning, physical therapy, the palliative care team, and social worker. At this meeting, we can get all the specific answers for you: detailed weaning plan with timelines and milestones, physical therapy he’s receiving and why it’s not more intensive or aggressive, what’s being done about his delirium, what are realistic timelines and probabilities for any of the various outcomes, whether they’ve considered consultation with Intensive Care at Home.

Ask about transfer to Intensive Care at Home if your current hospital lacks the expertise in difficult to wean cases. You can find more information at Intensive Care at Home.com, whether for continued weaning attempts or long-term ventilation if weaning in hospital doesn’t succeed. Don’t wait until you’re forced into a rushed decision. Get the expert help you need right now. There’s still time to optimize his care and explore all options.

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. 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.

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 the 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 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. 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.