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Quick Tip for Families in Intensive Care: I was Told My 50-Year-Old Husband in ICU is Brain Dead & He will Die. Now He’s Walking and Talking!

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

So, today’s tip is an email from Glenda and Glenda writes,

“Hi Patrik,

My husband is 50 years old, and he overdosed on prescription pain pills. He ended up with an anoxic brain injury and he was on a ventilator for 9 days. I was told he was brain dead with no quality of life. They said when taken off the ventilator, he would pass away.

We took him off the ventilator. I sat with him for 27 hours waiting for him to take his last breath. But I was talking to him saying, “Please fight and come back”. At that point, he squeezed my hand. I had to fight to get him back on a feeding tube and water. He went into a coma for days after moving him to palliative care alike. Again, palliative care urged me to let him go. I refused.

He woke up one week later and said my name. They removed the feeding tube, wanted to PEG (Percutaneous Endoscopic Gastrostomy) feed him. I asked for him to be checked first to see if he could swallow and what he could swallow. We are now in a skilled nursing home. He’s improving slowly. He knows me. He walks slowly with support.

My question is, how fast do you think he will recover? This is the love of my life and I want him back. His memory is bad. He seems lost.”

Well, Glenda, thank you so much for sharing your husband’s situation with me and here with our viewers as well because I think it’s critically important that families in intensive care understand what intensive care teams are saying is often not accurate and that the doom and gloom, they are feeding families in intensive care. It’s just that. It’s doom and gloom and you can believe it, or you don’t, it’s up to you. You can’t control the outside world, but you can control how you react. So, I can confidently say that.

I have worked in critical care for nearly 25 years 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 just need to have a look at our testimonial section, and you can see that we saved many lives over the years. You can also have a listen to our podcast section with our client interviews.

Anyway, ICU teams are very poor predictors when it comes to what happens after ICU. They’re also very poor predictors of what quality of life may look like or what it means because it means different things to different people.

It’s terrible that if intensive care teams want to make judgment about what quality of life looks like for certain people and make a judgment about it, whether people should live or die. That is a very poor predictor, but it’s also very poor practice and it is not in line with best practice for patients and for families.

So, but I want to break down your email, Glenda because I think there’s a quite a few things in there that are very important. You were told your husband was brain dead with no quality of life. Well, I can’t tell you how many people I’m talking to every week where they are being told by ICU teams, “Well, they’re telling me my spouse, my husband, my wife, whoever is brain dead.” I say to them, “Well, how do you know?” “Well, because they told me.”

Well, the biggest challenge for families in intensive care is 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.

Just because someone is telling you that your husband is brain dead, well, where’s the evidence? Nothing happens in the medical world without evidence. So, when someone is being declared “brain dead”, two independent doctors need to do brain death testing. Only if two independent doctors have done the brain death testing and come to the same conclusion, only then can someone be considered brain dead.

Next, they are talking about there was that you were saying in your email, “I was also told you it was brain dead. No quality of life.” Well, once again, what does quality of my life mean? What does it mean? It means different things for different people and intensive care should not be the judge of quality of life.

“Then he was taken off the ventilator. Then they would tell you he would pass away.” Well, they were wrong in that judgment once again. So, the ICU that your husband was at, they probably weren’t very experienced. Once again, you need to question everything because you are in a once in a lifetime life or death situation that you can’t afford to get wrong.

This is a very good example here, Glenda, again, I appreciate you sharing this situation because this will give hope to many other families in intensive care who are potentially in a similar situation.

So, according to your email, you were saying, he would pass away, then took him off the ventilator. You were sitting for 27 hours to wait for him to take his last breath. Then he was waking up in spite of him having an anoxic brain injury.

So, then they moved into palliative care. So, it sounds to me like they were almost trying very hard to kill your husband, which is terrible. Then, they urged you to let him go, you refused. Then, he says your name, then they even wanted to remove the feeding tube.

Well, you’ve done a great job for keeping him alive, and now he’s walking and he’s talking and yes, he’s not back to where he was before. However, he’s back to living life and he’s back to a slow recovery. That’s more than you were hoping for.

You’ve been talking about him dying in your email and now you’re talking about him living and slowly recovering. Yes, he’s not where he was before, but he’s there with you, which is all that you wanted to begin with.

How long will it take for him to recover? I really don’t know. It’s outside of my area of expertise. My area of expertise is intensive care and Intensive Care at Home. Given that your husband is off the ventilator, he’s got no tracheostomy. It is outside of my area of expertise, Glenda. Neuro rehab without all the complexities that we are dealing with ventilation, tracheostomy, it’s outside of my area of expertise. So, you have to ask elsewhere.

But I really wanted to showcase that your husband has come such a long way despite the doom and gloom and despite them trying to almost threaten you with him being brain dead, then they moved him to palliative care trying to almost kill him there. That’s not good enough. I don’t know which hospital you were at, but it is simply not good enough. Well, your husband has beaten the odds, which is really, really important.

So, for anyone watching this, as you can see, there’s always hope and there’s always another chance. You miss 100% of the chances you don’t take. How many other patients are there where intensive care teams would say, “We move this patient to palliative care and they’re going to die.” Well, what if they’re not?  So, you have to ask, or you have to question the intensive care team’s clinical judgment here.

So, would they have tried even harder to get into a better state, if they hadn’t? If they didn’t want to move him to palliative care, you got to ask the right questions here. So, thank you Glenda for sharing your and your husband’s situation.

Because we get so many emails from families in intensive care, we can barely keep up. At the moment, I’ve got time to do a daily video, and that’s how many questions we’re getting. This question is from 8th of January. At the time of this recording is the 5th of May, and that’s how many questions we’re getting from families in intensive care and to get your questions answered quicker.

That’s why we created a membership for families of critically ill patients in intensive care. You can become a member at intensivecarehotline.com if you click on the membership link there on our website or if you go to intensivecaresupport.org directly. In the membership, you have access to me and my team, 24 hours a day, in a membership area and via email and we answer all questions intensive care related.

In the membership, you also have access to 21 e-books and 21 videos specifically written and recorded for you who has a family member in intensive care who’s critically ill. Those e-books and videos, on top of the access that you have to me and my team in the membership, will help you to make informed decisions, have peace of mind, control, power, and influence when you have a loved one in intensive care, making sure your loved one gets best care and treatment.

I also offer one-to-one consulting and advocacy over the phone, Skype, Zoom, WhatsApp, whichever medium works best for you. I also talk to doctors and nurses directly. I ask all the questions with the doctors and nurses that you haven’t even considered asking, but must be asked when you have a loved one, critically ill in intensive care so that you can make informed decisions, have peace of mind, control, power, and influence, once again, making sure your loved one gets best care and treatment. I also represent you in family meetings with intensive care teams.

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 I send an email to [email protected].

If you like my videos, subscribe to my YouTube channel for regular updates for families of critically ill patients 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.

I also do a weekly YouTube live and if you are a subscriber of my YouTube channel, you will get a notification and share the video with your friends and families.

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.