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Hi, it’s Patrik Hutzel from intensivecarehotline.com with another quick tip for families in intensive care.

Today, I have a question from Heather who says,

“Hi Patrik,

I have my baby brother in ICU. He has been in a coma since the day after Christmas. They had him at another hospital two hours away. That hospital was trying to push us to remove his ventilation and life support and let him go. The doctors had told us he was unresponsive, wasn’t awake often and that he was brain dead. They said and trying to put that in quotes, no activity, he wasn’t breathing on his own. We did not want to take him off life support. So, we declined the topic. He was moved back to the hospital locally three days ago. We went to speak to the care team, and he was awake…”

Interesting. Why would he be awake if someone said he was brain dead? Interesting notion here.

“He was tracking movement with eyes and would look to sounds. Now with that being said, he wasn’t able to respond to commands, but it was his first day awake almost all day. He does jerk his feet away if you touch his toes or try to tickle. He will hold eye contact for short periods, then wander off from it. I believe he has tried to acknowledge the statement once, but I’m not sure if it was just good timing for a weird “aaa” sounding, horned to a very impactful statement from his oldest son.

Also, we put his stepmom on the phone for him to hear. Again, I’m not sure if this was another perfect time, not if a weird neurological response, but he had a face of ‘upset and wanted to cry.’ Then a single tear rolled down one cheek. When I went to wipe that tear, he reacted with his eye as if he knew I was moving my hand close by. He responds to touch like rubbing the head and belly. Like a baby does, his eyes roll like it feels good. So, I’m not sure what is what. He’s overdosed and was laying there a long time. He does have brain damage from lack of oxygen for an unknown time. I’m just looking for answers and hope, so we can make the right choices for him.

Thank you so much for all the helpful information you’re putting out.

From, Heather.”

Thank you, Heather for sharing your brother’s situation.

Now, it is so important that you double check everything that’s coming from intensive care team and it’s so important that you get a second opinion. I mean, it’s just a statement to say that someone is brain dead, where’s the evidence? If someone is being brain dead or declared brain dead, they need to go through rigorous brain death testing, followed that’s according to some strict policies, it needs to be done by two independent doctors and there needs to be a series of very stringent tests that a patient needs to pass or fail in order to be to be declared brain dead or not brain dead.

Now, why would someone even consider someone brain that if they’re waking up two days later? What’s their clinical judgment like? Most patients that I’ve seen in nearly 25 years of intensive care nursing or critical care nursing in three different countries where I also worked as a nurse manager for over 5 years, I have been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com.

You can look up our testimonials on our testimonial section at intensivecarehotline.com and you can also watch some client interviews at our podcast section. We have saved many lives over the years with our consulting and advocacy.

So, coming back to the patients that I’ve seen over the decades in ICU that I worked that were brain dead, when the testing was done, they were actually brain-dead. So, someone had to use good clinical judgment to even move patients towards the brain death testing and then often, they were brain dead most of the time as a matter of fact. But here, obviously there was a lack of good clinical judgment. Obviously, your brother woke up a few days later and now it seems to be what I would describe as semi-awake from what you are describing with me here.

Now, it is difficult to make the right decision here, but it’s also very difficult to prematurely withdraw life support and then let your family member die and then the questions will be asked, what if I hadn’t given approval to let him die? Then you have all these second thoughts on the once the dust has settled.

We have so many families contact us 12 months, two years after their family member has passed away in intensive care realizing, “Oh! We should not have given consent to that. We should have just kept him alive and sort of play the wait and see game.” I mean, we’re getting so many stories of families also who say, “Oh, we didn’t agree to withdraw life support.” “We’re so happy to have our family member around, their quality of life is not back to where they were before, but they’re still happy to be alive. We are happy to have them around.” It is not a one size fits all.

Also on the other hand, if someone has an advanced care plan and says, “Look, I don’t want to live if I’m ever in a situation like that.” That also needs to be respected. But it’s certainly not a one size fits all. It is important that you have very good clinical judgment, and you can’t just blur about anything, and repeat anything they’re saying. You have to have evidence and you have to make good clinical judgment, that’s why a second opinion is so important.

What we are doing in situations like that: we’re looking at medical records, we’re talking to doctors and nurses directly, we’re talking to you and your families directly, of course, and map out a strategy to get best care and treatment for your loved on making sure we look at all aspects when someone is in intensive care. When someone is in intensive care in a situation like that, there are dozens, potentially even hundreds of things happening simultaneously that need to be looked at before you can make an informed decision, before you can have peace of mind, control, power, and influence making sure that your loved one gets best care and treatment.

So, all aspects need to be taken into consideration including, your family members, previous quality of life, what it might look like after intensive care. Nobody knows really, it can only unfold over time. No one has a crystal ball; no intensive care team has a crystal ball. What your family member’s life might look like in two weeks’ time, in two months’ time, in two years’ time; nobody knows. It can only be proven in real life if that makes sense.

That’s why I am so opposed to withdrawing life support prematurely and especially without patient or family consent that should and must never happen in a modern society. We have to give people a chance if families and patients choose. So, it is probably very early days for your brother still to recover and how long will it take and so forth, you got to give it time. We are here to help if you need help.

I also want to quickly mention this email was sent to me actually in January, the time of this recording is April, that’s how far behind that’s how many questions we’re getting. We’re also serving, obviously, our paying clients.

So, the quickest way for you to get answers is simply to go to intensivecarehotline.com. Call us on one of the numbers on the top of our website or send an email to support@intensivecarehotline.com.

That’s also why we created a membership for families of critically ill patients in intensive care and you can become a member if you go to intensivecarehotline.com by clicking on the membership link or by going 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 get 21 eBooks and 21 videos that were written and recorded by me that will help you, once again, to steer this incredibly difficult environment that is intensive care and it will help you to make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets best care and treatment.

I also offer one-on-one consulting over the phone, Skype, Zoom, WhatsApp, whichever medium works best for you. I talk to you and your families directly. I talk to doctors and nurses directly and when I talk to doctors and nurses directly in particular with you, you will see that I ask all the questions that you haven’t even considered asking but must be asked for you to make informed decisions, have peace of mind, control, power, and influence.

Now, I also represent you in family meetings with intensive care team so that you have a strategy when you go into any family meetings. Very important that, once again, you make informed decisions, you have peace of mind, control, power, and influence making sure your loved one gets best care and treatment.

We also offer medical record reviews in real time so that you can get a second opinion in real time. We also offer medical record reviews after intensive care if you have unanswered questions, if you need closure, or if you are suspecting medical negligence.

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

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, comment below what you want to see next, what questions and insights you have, and share the video with your friends and families. I also do a weekly YouTube live where I answer questions live on the show. Subscribe to my YouTube channel so you get notifications for the YouTube live.

Thanks for watching.

This is Patrik Hutzel from intensivecarehotline.com and I will talk to you in a few days.

Take care for now.

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