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.

Today I have a question from one of our readers who says,

Hi Patrik,

My wife is on a ventilator, breathing tube and sedated in ICU and she’s showing limited signs that she’s reacting, but she is showing some signs. The ICU team doesn’t seem to believe us.

This is one of the most frustrating situations families face in ICU. Your wife is on a ventilator, she’s sedated, she’s got a breathing tube in her mouth, and you are seeing subtle signs that she’s reacting. Maybe a squeeze of the hand, a flicker of the eye, a slight movement, and the ICU team is dismissing what you’re telling them.

Here’s what you need to understand. You know your wife better than anyone in that ICU. You’ve lived with her, you know her baseline, you know her responses, and you’re picking up on things that the ICU team might not be seeing during their brief assessments.

Here’s why the disconnect happens. The ICU team is looking at clinical markers, sedation scores, Glasgow Coma Scale (GCS), RASS (Richmond Agitation-Sedation Scale) score, ventilator settings, medications. They’re doing brief neurological assessments a few times a day, but you’re there for hours, you’re watching continuously, you’re seeing those fleeting moments that might not show up during a formal assessment.

Sedation in ICU isn’t an exact science. Your wife might be cycling through lighter and deeper levels of sedation throughout the day. The ICU team might be assessing her when she’s in a deeper phase, while you’re seeing her responses during lighter phases. It also depends a lot on what sedatives and opiates your wife is on. I’ve done plenty of videos about the differences in sedation. Go and have a look on our website at intensivecarehotline.com. Type in types of sedation in the search box.

The critical importance of medical records. Here’s what you absolutely need right now, complete access to all medical records. I cannot stress this enough. You need current sedation protocols and medication doses, ventilator settings and respiratory parameters, daily sedation assessments and Glasgow Coma Scale scores, CT (Computed Tomography) scans, MRI (Magnetic Resonance Imaging) scans, all imaging reports, lab and pathology results, particularly drug levels if they’re monitoring sedatives and opiates, nursing notes, doctor’s notes, these often capture observations that doctors don’t see, daily progress notes from the ICU team, vital signs, fluid balance charts, everything.

Without complete medical records, you’re flying blind. You can’t advocate effectively, you can’t ask the right questions, and you can’t challenge assessments that don’t match what you’re observing.

How can we help you right now? This is exactly where a consulting call with myself or one of my team members at intensivecarehotline.com becomes absolutely critical.

Here’s what we do. We review everything. We go through the complete medical records with a fine tooth comb. We look at sedation, opiate medications and doses, is your wife over sedated? Timing of assessments versus timing of your observations. Whether there’s a sedation and opiate plan, or if they’re just winging it. Neurological assessments and whether they’re adequate.

We also join ICU team meetings. We can conference call with the ICU team directly alongside you. It changes the whole dynamics because we speak their language, medical terminology, clinical protocols, we know how they operate. We ask the tough questions, we ask the questions that you haven’t even considered asking, and they’re not used to hearing from families like yours. We challenge assumptions and advocate based on evidence and patients’ rights. We level the playing field so you’re not dismissed.

We question and advocate. When the ICU team says she’s not responding, we ask: what specific sedation medication and opiates is she on, and what doses? What’s her RASS score and what’s her target for the RASS? Have you tried a sedation and opiate vacation or daily interruptions? What’s the time frame for neurological improvement expectations? Are you monitoring drug levels? Could there be a drug accumulation or drug errors? What assessments are you doing beyond Glasgow Coma Scale?

We do not let them brush you off from what you’re observing. We demand documentation, we demand the plan, and we demand that they take your input seriously.

While you’re waiting to call me or one of my team members, start documenting everything, time of day when you see responses, exact nature of the responses, hand squeeze, eye opening, movement, what stimulation preceded the response, your voice, touch, music, how long after medication administrations these occur, which staff members were present, if any. Video recording can be powerful. Even written documentation creates a pattern that’s hard to dismiss.

The sedation question. One of the biggest issues we see is over sedation and over opiate use or inappropriate sedation management. Your wife might be on propofol, short acting but can accumulate. Fentanyl or other opiates such as morphine can build up in tissues. Midazolam, also known as Versed, notorious for accumulation, especially in kidney or liver problems. Dexmedetomidine, also known as Precedex, has a different sedation profile. It’s probably the best out of all of them, but may in some situations also not do the job.

If your wife is showing signs of responsiveness that the team isn’t seeing, the timing might correlate with lighter sedation levels. This is exactly what we investigate during our consulting calls and medical record reviews.

Looking ahead, long-term ventilation considerations. Let’s quickly talk about something the ICU team might not be discussing yet, but you need to know about. What if your wife needs prolonged ventilation? If the weaning process and waking up process is difficult, if she develops complications, or if she needs a tracheostomy for long-term ventilation, you have options beyond staying in ICU indefinitely or going to another hospital.

This is where Intensive Care at Home at intensivecareathome.com becomes your game changer. If your wife needs long-term mechanical ventilation, a tracheostomy, ongoing critical care support including IV (Intravenous) infusions, Intensive Care at Home allows you to bring her home with proper medical and nursing support 24 hours a day with intensive care nurses, keeping her out of ICU predictably and permanently. That means she’s in her own environment, which can dramatically improve recovery. You have more control over her care. The risk of hospital acquired infections is basically zero. Quality of life and quality of end of life improves significantly. And cost is only 50% of the ICU bed, which is also of interest for funding bodies. We’ve helped countless families transition loved ones home safely with ventilation support. It’s not for every situation, but when it works, it’s transformational.

Your action plan right now. Number one, get complete copies of all medical records immediately, you have a legal right to these. Document every response you’re seeing, time, circumstances, exact behaviors. Request a sedation and opiate vacation, or at minimum, a reduction in sedation to properly assess neurological function. Make this request formally. Contact us at intensivecarehotline.com for a consulting call. We’ll review the records, prepare questions, and we’ll join the next ICU meeting with you. Ask about the weaning plan and long-term ventilation possibilities if needed. Intensive Care at Home at intensivecareathome.com is an option. Go and check out intensivecareathome.com.

Don’t accept dismissal. Your observations matter. Your intuition matters and is probably one of the most accurate signs for improvement. You are your wife’s best advocate, and when you’re seeing responses that the ICU team isn’t acknowledging, that’s not you being overly hopeful, that could be genuinely important clinical information. The ICU team should be welcoming your input, not dismissing it. If they’re not taking you seriously, that’s when you need someone like us to step in and make sure your voice is heard.

Get help now. Go to intensivecarehotline.com. Don’t navigate this alone. The decisions being made right now about sedation, ventilation, and neurological prognosis have massive implications for your wife’s recovery. Schedule a consulting call, get access to our resources, have us review your medical records, and let us advocate alongside you with the ICU team. Call us or email us at intensivecarehotline.com. Time matters in ICU. Every day counts.

And remember, if long-term ventilation becomes part of the picture, go and check out intensivecareathome.com. We offer a path there to get your wife home safely with the support she needs.

I have worked in critical care nursing for 25 years in 3 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, and you can verify that on our testimonial section at intensivecarehotline.com and on our intensivecarehotline.com podcast section where we have done client interviews. 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, 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 and 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. And 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.