My name is Patrik Hutzel from intensivecarehotline.com, with another quick tip for families in intensive care.  Here at intensivecarehotline.com, 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, I have an email from Mary Jane, who says,

“Hi Patrik,

My mother-in-law had a massive stroke and ruptured her aorta three weeks ago. She underwent a 10-hour surgery to save her life. She started having seizures and has been sedated and on a seizure cocktail. She’s non-responsive. An MRI showed she had brain damage on both sides. She’s on a tracheostomy, and they had to give her blood two days ago. Her reflexes are still there. They want to move her to a long-term care facility. Why would they do this if she’s non-responsive still?”

Mary Jane

First of all, I want to say thank you for writing in, and I can only imagine how incredibly stressful, frightening, and confusing this situation must be for you and for your family. You’re dealing with a loved one who was critically ill after a massive stroke, a ruptured aorta, major surgery, seizures, and now a tracheostomy, all at the same time. Let me do my best to address your questions clearly and directly.

So, why is your mother-in-law still non-responsive after a massive stroke and brain damage? When someone has a massive stroke with brain damage on both sides, like your mother-in-law, non-responsiveness is unfortunately very common and can last for weeks or even months.

Here’s why.

Number one, bilateral brain damage after stroke. When the MRI (Magnetic Resonance Imaging) shows brain damage on both sides of the brain, this is called bilateral cerebral injury. The brain controls everything: movement, consciousness, communication, swallowing and breathing. When large areas on both sides are damaged, the brain simply cannot send the right signals to the body. This is why she cannot follow commands or respond, even if her reflexes are still present.

The fact that her reflexes are still there is actually a meaningful sign. It tells us that the brain stem, the most primitive and vital part of the brain that controls breathing and basic reflexes, still has some function.

Number Two, post-operative brain injury after aortic rupture surgery. A ruptured aorta, also known as aortic rupture, is one of the most life-threatening surgical emergencies in medicine. A 10-hour surgery to repair a ruptured aorta carries a very high risk of hypoperfusion, which means reduced blood flow to the brain during the procedure. When the brain doesn’t get enough blood flow, even for a short period, it can suffer additional injury on top of the stroke. This is something called post-operative cognitive dysfunction or more severely hypoxic ischemic brain injury, and it can cause prolonged non-responsiveness.

Number three, anti-seizure medications, seizure cocktail, and sedation. After a stroke, seizures are common because damaged brain tissue can become irritable and cause abnormal electrical activity. Your mother-in-law is on a seizure cocktail. This likely means a combination of anti-epileptic drugs such as Keppra, levetiracetam, phenytoin, also known as Dilantin, valproate, or phenobarbital, possibly combined with sedation medications like Propofol, midazolam, also known as Versed, or Precedex.

These medications alone can cause prolonged sedation, confusion, and non-responsiveness, especially in elderly patients. The combination of brain injury and these medications can make assessing her true neurological status very difficult. This is a critically important point. Until she has been off sedation and seizure medications long enough for them to clear her system, it is very difficult to get a true picture of her neurological status. Right?

So, why would they move her to a long-term care facility while she’s still non-responsive? This is a great question, and I can completely understand why it feels alarming and confusing. It also shows to me that your email is coming from the US. You must be based in the US because shifting patients from ICU to long-term acute care (LTAC) is a US phenomenon only.

So, here are the most likely reasons the ICU team wants to transfer her. ICU beds are for acute, active treatment. Once the ICU team feels they have done everything they can acutely, the surgery is done, the seizures are being managed, the tracheostomy is in place, they may think she no longer needs acute ICU-level care. Long-term acute care facilities in the US, also called LTAC, or skilled nursing facilities with ventilator capability, are often the next destination from an ICU perspective, even though they are ill-equipped to manage patients exactly like your mother-in-law who is on a ventilator with a tracheostomy. I would go as far as they’re not only ill equipped, they’re not equipped to manage that at all.

Doesn’t necessarily mean that ICU has given up on her, but they want her sort of out of sight, out of mind. It means they believe her condition has stabilized enough to be managed outside of the acute ICU environment. However, this is very important to note. Nothing could be further from the truth because we are working with people in the US every day, where ICUs want to push them out to an LTAC, and it strikes disaster. It’s a disaster waiting to happen. People have died; people have bounced back into ICU within less than 24 hours a day. If they do end up in LTAC and they don’t bounce back, they often die; they don’t make progress, and it gets worse by the day.

And it’s very important that you understand you have every right to ask questions, understand the full picture, and to deny your mother-in-law going to an LTAC and make sure you and your family are part of this decision.

So, what should you be doing right now, Mary Jane? Here’s my strong advice for you and your family.

Number one, get access to all medical records.  You need to be reviewing all of her medical records, MRI reports, surgical notes, medications lists, nursing notes, doctor’s notes, progress notes from the neurologist, ventilation charts, laboratory results, fluid balance charts. Leave no stone unturned.

Without access to all of her medical records, you are flying blind. You cannot make informed decisions, have peace of mind, control, power or influence, or ask the right questions without knowing exactly what has been documented and what the team’s assessments and plans are. Many families in your situation don’t know they have the right to question everything and get access to all medical records. You do have the right. Request them and review them carefully.

Number two, speak to the specialist, not just the bedside nurse. You need to speak directly with a neurologist who’s managing the stroke and seizures, the neurosurgeon, the vascular surgeon who performed the aortic repair, the ICU attending doctors. Ask them directly, what is my mother-in-law’s prognosis? What is the goal of her transfer to an LTAC? What milestones are we looking for to indicate improvement? What happens if she doesn’t improve?

And most importantly, now, number three, book a consulting call with myself or someone on my team at intensivecarehotline.com, because this is where we make a real difference for you and your family. At intensivecarehotline.com, we do consult calls  where me and my team with over 25 years of critical care nursing experience, speak with you and then directly with the ICU team on your behalf. We help you review and interpret the medical records, ask the right questions to the ICU team, questions that families don’t even know they need to be asked. We advocate for your mother-in-law’s best interests, we help you understand whether the proposed transfer to long-term care is appropriate, premature, or even legal, because most of the time it’s not even legal without family consent.

We help you understand what realistic expectations look like given the MRI findings, the surgery, and the seizure management. We also call the ICU team directly with you, so you’re not facing this alone. And you will see that by me talking to them or by one of my team members talking to them, it changes dynamics in your favor.

So, you also need to understand what does long-term ventilation and tracheostomy care look like. Your mother-in-law already has a tracheostomy, depending on her progress, there are a few possible paths. If she improves neurologically, she may eventually be weaned off the ventilator through the tracheostomy, a process called ventilator weaning and potentially the tracheostomy can be removed over time. If she cannot be weaned off the ventilator, she will need long-term ventilation and tracheostomy support. This can be managed in the ICU, or it can be managed at home. It cannot be managed in an LTAC or a skilled nursing facility safely.

Have a look at the reviews online, have a look at our case studies where we have people begging us to help them to get their loved ones out of LTAC or a skilled nursing facility because it is so bad. The good news is there is a home-based alternative, which is Intensive Care at Home.

At intensivecareathome.com, we help families bring their critically ill loved ones home, even when they’re on long-term ventilation, invasive with a tracheostomy, or non-invasive, BiPAP or CPAP, we do both at home. We provide complex nursing care for those patients or even palliative care when that is the only choice. But more importantly, we’re doing it in a familiar and loving environment for families.

Going home with Intensive Care at Home, it’s possible, it can be life changing for patients and families. For patients who have been in ICU for weeks or months, being cared for at home rather than in an institution will significantly improve your loved one’s quality of life, your quality of life as well. It reduces infection risk, allows family to be fully involved in care.

Whether your mother-in-law eventually needs long-term invasive ventilation with tracheostomy, non-invasive ventilation, BiPAP or CPAP, or palliative care at home, or a combination of all of the above, the good news is with Intensive Care at Home, we help you make that a reality and keep her out of ICU predictably and permanently, or at least give your family the option to consider this path. And it also cuts the cost of an ICU bed by 50 percent, which means health insurances and any funding bodies should have an automatic interest in that.

Here are some of the most important questions you should be asking the ICU team immediately.

Number one, how long has she been fully off sedation and have blood levels of all sedation and seizure medications been checked to confirm that they have cleared?

Number two, has a formal neurological prognosis assessment been done with sedation and opiates fully off?

Number three is a continuous EEG (electroencephalogram) being used to monitor for ongoing seizure activity, non-convulsive seizures?

Number four, what are the specific findings on the MRI, which areas of the brain are affected, and what does this mean prognostically?

Number five, what is the goal of the transfer to long-term care? Is it for active rehabilitation, ongoing medical management, comfort care, and is it safe? Because I can tell you once again, LTAC  (Long Term Acute Care) or skilled nursing facilities are not safe, full stop.

Number six, what would need to happen for your mother-in-law to potentially return to ICU or be considered for more aggressive treatment?

And number eight, what are the ventilator weaning goals? Is the team actively trying to wean her from the tracheostomy?

To summarize, Mary Jane, to directly answer your question, they are likely moving her, they’re likely wanting to move her to a long-term acute care because they think her acute phase is over, not because they’ve given up, but it’s not the right choice. She’ll be going from bad to worse. You need to oppose this transfer, and they can’t do it without your consent anyway.

Non-responsiveness and heavy sedation can last for weeks. The true neurological picture often cannot be assessed until all sedation, opiates, and seizure medications have truly cleared. However, you need to be informed; you need access to all medical records. You need to be advocating loudly and clearly for your mother-in-law, and this is exactly what we do here at intensivecarehotline.com.

Book a consulting call with myself, we can speak with you and the ICU team directly to make sure your mother-in-law gets best care and treatment and the treatment she deserves, and that you and your family are never left in the dark. And if long-term ventilation, plus or minus tracheostomy or palliative care at home, becomes a possibility, go to intensivecareathome.com, and we can help you there.

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. And 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, right? 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. And 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. And 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.

And that’s why I do one on one consulting and advocacy over the phone, Zoom, WhatsApp, whichever medium works best for you. And 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. And 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, so, 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 e-books and 21 videos that I’ve personally written and recorded. And 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 the best care and treatment always.

And all of that you get at intensivecarehotline.com. Call us on one of the numbers at the top of our website or simply send us an email to support at intensivecarehotline.com 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.