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.

Now, today’s question is absolutely critical and it comes from Crystal, who is one of our clients who shared this incredible message with us. Crystal says,

“Hi Patrik,

Thank you all so much for your assistance with my mother-in-law, for your knowledge, care and updates. Your assistance helped us to be knowledgeable in conversing with the doctors about everything going on with her. If we didn’t have your help, then they would have just called her brain dead and pulled the plug after her stroke. She has continued to improve and we know now what to ask and keep helping her with home care as well if needed.

We will continue to seek your advice, opinion, and recommendations to ensure a safe and complete recovery for Alice, my mother-in-law. Thank you again so very much for your services. This is so needed by all dealing with a loved one in ICU.

From Crystal.”

Now Crystal, this is an incredibly powerful testimony.

Thank you for that, and because Crystal and her family almost lost Alice completely. The ICU doctors were ready to declare her brain dead and withdraw life support after her stroke, but because Crystal and her family had our help at hand with intensivecareathome.com, they knew what questions to ask, they knew how to advocate, and they knew how to push back when necessary and guess what?

Alice is now at home continuing to improve, and her family has the knowledge and tools to support her recovery. So, why do ICU doctors sometimes rush to declare brain death after a stroke?

Look, I need to be very clear here. Not all ICU doctors rush to these conclusions, and like I always say, there’s a lot of good things happening in ICU, but it does happen more often than it should, and here’s why.

1. Time pressure and bed shortages.

ICUs are under enormous pressure, beds are limited, costs are high. There’s always another critically ill patient waiting and there’s a staff shortage, whether it’s doctors, nurses and allied health. When someone has a severe stroke, particularly a hemorrhagic stroke or a massive ischemic stroke, doctors may see the initial scans and prognosis and think this person won’t recover. Just because a person won’t recover doesn’t mean they’re brain dead.

2. Poor prognostication in the acute phase.

Here’s the thing, it’s incredibly difficult to accurately predict neurological outcomes in the first 72 hours and even the first week or two weeks after a severe stroke, sometimes even after two months. The brain is swollen, there’s inflammation, sedation and opiates are often on board, and the person has not had time to show what recovery is possible.

3. Lack of patient and family advocacy.

When families don’t know what questions to ask, don’t understand the medical jargon and don’t have access to all the medical records, they’re at a significant disadvantage. Doctors may present withdrawal of life support as the compassionate option without fully exploring all possibilities.

4. Misunderstanding brain death versus poor neurological prognosis, i.e. brain damage, and this is absolutely critical.

True brain death is a legal definition. It means complete and irreversible cessation of all brain function, including the brain stem. This is very different from a poor neurological prognosis, a persistent vegetative state, or simply brain damage.

Sometimes families are told someone is basically brain dead when that’s not the medical or legal reality that should be or must be used. Once again, there’s a huge difference between someone being brain dead or brain damaged.

So, how did we help to save Alice’s life? Well, Crystal’s family worked with us at intensivecarehotline.com one on one, and here’s exactly how we helped them.

Number 1. Get access to all medical records. This is absolutely fundamental. We helped Crystal’s family obtain all of Alice’s medical records. Everything. CT scans, MRI results, nursing notes, doctor’s notes, fluid balance, ventilation charts, everything. We left no stone unturned. Without access to all the medical records, you are flying blind.

Without access to a consultant or advocate that understands intensive care inside out like we do here at intensivecarehotline.com, you’re flying blind. Without knowing how to manage intensive care teams, you’re flying blind. 99.9% of families in intensive care don’t even know that managing intensive care teams is possible, but that’s all we do here at intensivecareathome.com.

Without access to the medical records, you also don’t know what tests have been done, what the actual results are, what treatments have been tried, what treatments have not been tried. Is what they’re telling you face value, or what’s actually documented in the records?

Now we’re often finding the intensive care team is not even telling you half of the story, and this is where our expertise comes in. We already know what to look for, we already know what they’ve probably withheld from you, we already probably know that they’re trying to manipulate you, they’re trying to guilt trip you for saving your loved one’s life. Don’t be guilt tripped for trying to save your loved one’s life.

Don’t let them tell you that it’s in the best interest of your critically ill loved one to die. What a whole lot of rubbish. It’s up to you whether it’s in the interest of your loved one to die or not. You would have those conversations with your loved one, not the intensive care team.

So having all medical records allowed us to review exactly what was happening with Alice’s brain, what the imaging actually showed, and whether the ICU doctor’s conclusions matched the clinical picture, or did it match the bed status in ICU because they were full and they had no staff and needed to empty a bed by withdrawing treatment and telling you it’s in the best interest.

Next, consulting calls with the ICU team. We arranged and prepared Crystal’s family for consulting calls with myself and the intensivecareathome.com team alongside the ICU doctors and ICU nurses and this is really where the magic happens.

When you have an experienced ICU nurse like myself or one of our team members on these calls, we can ask the right questions that families don’t know to ask, challenge assumptions, ask for clarification on prognosis, request additional testing or time before any irreversible decisions. Advocate for the family’s wishes and the patient’s real best interest. Cut through the medical jargon, get straight to the facts, ask for ICU bed status, ask for ICU staffing levels, ask whether they’ve really been transparent, ask whether they’ve had all the other specialists involved like the neurologist and other specialists.

These consulting calls completely changed the dynamics. Instead of being passive recipients of bad news, Crystal’s family became active participants in Alice’s care.

Number 3. Questioning and advocating. We taught Crystal’s family exactly what to question, how to advocate effectively, helped them understand what brain death actually means legally and medically, the difference between brain death and severe neurological injuries such as brain damage, why waiting and reassessing is often the right approach, what realistic recovery timelines look like after a stroke, how to push back professionally but firmly when doctors are being too pessimistic.

So, what questions should you ask if your loved one has a severe stroke? If you’re in a similar situation to Crystal’s family, here are the critical questions you need to ask about the diagnosis. Has a formal brain death examination been performed by a qualified neurologist, and if it has been performed and they haven’t asked you for consent, you should be questioning that straight away. You need to give consent to brain death examination.

Next, what specific criteria are being used to assess brain function? Are there confounding factors like sedation, opiates, hypothermia, metabolic disturbances that could affect the examination?

About prognosis. what’s the evidence base for the prognosis you’re giving us? How much time has passed since the stroke? Is it too early to prognosticate accurately? Have all reversible causes been addressed? What is the plan if we wait another week, another two weeks, another two months?

About treatment: what treatments have been tried to reduce brain swelling? Has the patient received optimal stroke care, including clot-busting drugs or thrombectomy if appropriate? Are there any clinical trials or advanced therapies that might help?

About time: how much time can we have before making irreversible decisions? What are the risks of waiting? Can we have a second opinion from a different neurologist or hospital?

Now, my advice is always. Do not make a decision today that you might regret in 12 months’ time or 24 months’ time. Never, never ever. Because at the moment your emotions are running high, and emotional decisions are often not good decisions. You need to make rational, logical decisions.

Is it a good idea to stop treatment today and let your loved one die? Would that be a good idea in 12 months’ time still, in 24 months’ time, when you really had time to digest everything?

I can tell you we have so many families reach out to us who tell us, my loved one was in ICU one year or two years ago, we agreed to stop everything, they died, and now we’re wondering, now we’re reading your blog, was there a chance of my loved one surviving? There probably was.

When you look at the research, 70–90% of ICU patients survive. So, the odds are in your loved one’s favor, but that’s not what the ICU team is telling you. They want to make look like that, the odds are not in your love one’s favor. Get facts, not opinions and don’t let someone else’s opinion become your reality.

Now, let’s look at Alice’s recovery journey. Now here’s what’s so incredible about Alice’s story. The doctors were ready to call her brain dead and withdraw life support, but Crystal’s family, armed with knowledge and support from us at intensivecarehotline.com, pushed back. They asked for time, they questioned the prognosis, and they advocated fiercely.

And you know what happened, Alice started showing signs of improvement over time, not overnight, just over time. Small things at first, maybe a flicker of eye movement, a response to painful stimuli, something that indicated her brain was still there, still fighting.

Now Alice is at home continuing to improve, she’s working on her recovery with her family’s support, and they know exactly what to ask for and how to help her. This would have never happened if Crystal’s family had simply accepted that first devastating prognosis, so also, as a side note.

Some stroke patients need a tracheostomy. They might need long-term ventilation after a stroke, and it’s really important that you understand and know that if your loved one has had a severe stroke and needs long-term ventilation with or without a tracheostomy, you have options beyond keeping them in ICU long-term or sending them or keeping them in ICU long-term.

So, if that is your situation, go to intensivecareathome.com, we help families to bring their loved one’s home with full ICU level care when needed. This is a long-term option that can keep your loved one out of ICU predictably and permanently if they need ongoing ventilation support.

Think about it now, Alice is at home, she doesn’t need Intensive Care at Home, which is amazing, of course, but even, you really need to arm yourself with all possible knowledge so that you can pre-plan, so that you don’t need to buy into the limited reality of intensive care teams at times. Because that limited reality like in Alice’s case is, well we just help families. Alice is brain dead and they will just sign off on a death warrant, not so fast. Not so fast.

So, you know options now. We helped countless families set up home ventilation, arranged for 24-hour nursing care, including the funding and navigate the complex world of home ICU care, create teams around what the clients need. It’s absolutely possible and it’s often the best option for quality of life and continued recovery.

Now, what’s the bottom line here? Don’t let ICU doctors rush critical and life or death decisions. Look, here’s what you need to understand. ICU teams are highly trained and most of them are doing their absolute best in incredibly difficult circumstances, but they’re also human, they’re under pressure, there’s politics in hospitals, and they can’t possibly give every case the detailed attention to you as a family member that you actually need.

So, to summarize, when someone tells you your loved one is brain dead and has no chance of recovery, especially in the first days or so, and weeks after a stroke, you need to get all medical records, every single page, leave no stone unturned. Arrange a consulting call with myself or the intensivecarehotline.com team to review everything with the ICU doctors present. Questions and advocate, don’t be afraid to push back and ask for time.

Never agree to brain death testing if you are unsure, never agree to anything that could be at the detriment of your loved one. Consider all options including intensivecareathome.com for long-term care, because just by you mentioning that option, we’ll push the pressure back on the intensive care team to keep going.

Alice is alive today because her family did these things that just didn’t accept the first prognosis, they just didn’t accept no for an answer. They fought, they advocated, and they had expert help to guide them through the process and never let someone else’s opinion about something, which includes prognosis and diagnosis, become your reality, which is what Alice’s family did not accept, and that was a good thing.

So go and get help right now. Go to intensivecarehotline.com, call, book a consulting call with myself and get help and access and understand all medical records, we can help you with that.

And I’ll talk to you soon, subscribe to my YouTube channel, share the video with your friends and families, click the like button, click the notification bell.

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 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.

If you like my videos, subscribe to my YouTube channel for regular updates for families in intensive care. Click the like button, click the notification bell, share the video with your friends and families, and comment below what you want to see next, what questions and insights you have from this video.

I also do a weekly YouTube live where I answer your questions live on the show. You will get notification for the YouTube live if you are a subscriber to my YouTube channel or my intensivecarehotline.com email newsletter at intensivecarehotline.com.

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.