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Quick Tip for Families in Intensive Care: My Late Husband was Supposedly Brain Dead! He Made Sounds for 5 Hours Before I Agreed Donating Organs

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

So today, I want to read out an email from one of our readers from Gail who says, “I was told my late husband was brain dead. I was asked to donate his organs. I agreed he bucked, bounced, folded, and made animalistic sounds for 5 hours. Was he really brain dead?” Now, that’s a great question. I’ll read out now, what is the official definition of brain dead.

So, brain death is the permanent irreversible, and complete loss of brain function which may include cessation of involuntary activity necessary to sustain life. It differs from persistent vegetative state in which the person is alive, and some autonomic functions remain. It is also distinct from coma as long as some brain and bodily activity and functions remain. It is also not the same as the condition Locked-in syndrome. A differential diagnosis can medically distinguish these differing conditions. Brain death is used as an indicator of legal death in many jurisdictions but is defined inconsistently and often confused by the public. Now, I’ll leave it there. This is actually the official Wikipedia page about, what is the definition of brain death?

Now, Gail, here is what’s really happening on a much bigger picture level. I am saying over and over again, and I have been saying this probably now for over a decade that 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. They don’t know how to manage doctors and nurses in intensive care. I think that’s your email pretty much sums it up what’s happened here.

Now, I can 100% say that your husband was not brain-dead and that you should have never agreed to donating his organs. It sounds to me like you have been misled. Now, many families contact us, and they say, “Oh, we’ve been told my loved one in intensive care is brain dead.” Then, I have a series of questions that I go through usually, does that mean he stopped breathing? He or she or not opening eyes? No signs of life whatsoever.

If someone is bucking, bouncing, folding, and making animalistic sounds, they are definitely not brain dead because the nervous system is working.  So, no matter which way you twist and turn it here, Gail, your husband was not brain dead. He was probably severely brain damaged but that’s a big difference. There’s a big difference between someone being officially brain dead and someone being brain damaged.

Now, when someone is brain dead, they need to be tested by two independent doctors to confirm brain death. I don’t know whether that’s happened, but I don’t think it has because otherwise your husband wouldn’t have been in that situation.

The biggest problem here is that families in intensive care don’t ask the right questions. They believe everything that intensive care teams are telling them. They do not question intensive care team’s agendas, which in this situation might have been needing an empty bed pretty quickly and donating organs.

Again, donating organs has their time and their place. However, it needs to be well thought through and it shouldn’t be rushed. Whereas in your situation, it sounds like everything was rushed. It sounds like there was no due diligence done. It sounds like no two independent parties have tested for brain death.

This is why I also say when you have a loved one in intensive care, it’s a once-in-a-lifetime situation that you can’t afford to get wrong. You can’t afford to negotiate with intensive care teams without having a clinician by your side, on your team, without having a clinician, do the talking for you, who can ask all the right questions, who knows about your rights, who knows all about intensive care.

I have worked in intensive care for over 20 years in three different countries as a critical care nurse where I also worked as a nurse unit manager for over five years. I have been consulting and advocating for families in intensive care all over the world for the last 10 years. So, I have a very good understanding what is what is impossible, what intensive care teams say and why they’re saying it, and how to counteract it and making sure that you can make informed decisions, get peace of mind, control, power, and influence.

In this situation, Gail, what I would strongly recommend is get back to us and we can do a medical record review for you, and we can verify for you most likely that your husband wasn’t brain dead. I’m not sure whether you wanted to take legal action against the hospital, but it sounds to me like a life has been lost unnecessarily.

So, that is my quick tip for today.

If you have a loved one in intensive care and you are in a once in a lifetime situation that you can’t afford to get wrong, go to intensivecarehotline.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected].

We also have a membership for families of critically ill patients in intensive care at intensivecaresupport.org. There, 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.

I also offer one-on-one consulting and advocacy over the phone, via Skype, via Zoom, via WhatsApp, whichever medium works best for you. I talk to doctors and nurses directly and I ask all the questions you haven’t even considered asking because Gail, if you had asked the questions that I would have considered asking, your husband might still be alive today. I have interviews on my podcast where clients verify that we have helped them save their loved ones lives with our consulting and advocacy in intensive care.

So, I also represent you in family meetings with intensive care teams. You need representation with intensive care teams when you’re going into a family meeting because otherwise, you don’t know what’s to come whereas I know what’s to come. I know what they will say. I know what they say. I know how they say it. I know when they say it and I’ll make sure once again you get in a position where you can make informed decisions, and get peace of mind, control, power, and influence.

Now, we also review medical records in real time so that you can get a second opinion in real-time. We also review medical records after intensive care if you have unanswered questions, if you need closure, or if you are simply suspecting medical negligence.

If you like my video, 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 or what questions and insights you have from this video.

Thanks for watching.

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

Take care for now.