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

So today, I want to answer a question from Charles who writes in and says, “My sister has been in ICU for three weeks. She’s been treated for almost every organ, dialysis, lungs, heart, et cetera. She suffered a stroke and massive cardiac arrest while in ICU. After induced coma, she was removed, and she couldn’t wake up. They performed a brain scan and found that her brain is swelling. Now, they have informed the family that medically, there’s nothing they can do. They took her off everything except the ventilator. How long will she still be alive? Does the ventilator do any good? From Charles.” Thank you, Charles, for sharing your sister’s situation with us.

Now, I’ll start with, 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 and they don’t know how to manage doctors and nurses in intensive care.

Why am I saying that? Your question is very good, but to a degree also incomplete because you’re saying they haven’t taken away mechanical ventilation. Now, the biggest question to me is does she have a breathing tube in her mouth sitting in her throat, ventilating the lungs? Or does she have a tracheostomy, which is a tube sitting in the neck, ventilating the lungs? Big difference there and that is really what might make or break your sister’s future.

So, if she does have a breathing tube, she will not be able to stay on that breathing tube forever because it’s simply an unsafe and unstable airway in the long run whereas performing a tracheostomy will give your sister time to wake up.

Now, you didn’t mention anything about irreversible brain damage. You mentioned that her brain is swelling, but you didn’t mention anything about irreversible brain damage, which she may well have after a stroke, but you haven’t shared that. Again, the devil is in the detail, and unless you really go down rabbit holes and look at medical records or talk to doctors and nurses directly, which is something we do. We talk to doctors and nurses directly. We look at medical records, it’s somewhat very incomplete information.

What does it mean that her brain is swelling? Is it an irreversible brain damage, which is probably something they would have seen in the brain scan. Brain-injured clients or patients, whether it’s after a stroke, after a hypoxic brain injury, after a traumatic brain injury can recover or improve over time. To what degree is very uncertain.

So, your next step, if your sister has a breathing tube and you want to continue treatment, if that’s what your sister would want it, then you should be advocating for a tracheostomy as the next step.

So, you are saying in your email, “Medically, there’s nothing they can do.” Well, I argue if she doesn’t have a tracheostomy, then there is something they can do medically by changing treatment options. With a breathing tube, once the breathing tube is out, especially if she’s not waking up, she will have an unstable airway. She will most likely aspirate and end up with an aspiration pneumonia and then possibly die or need another intubation, which then could trigger a tracheostomy once again. So, it all leads towards a tracheostomy here.

If you and your family want to continue treatment for your sister, it sounds like all other issues you mentioned she had dialysis for kidney failure, heart failure because of the cardiac arrest, that seems to be sorted for now. The question really is to what extent is her brain damaged and how do you want to move forward? Do you want to give her a chance to wake up? Do you want to look at prolonging her life, and taking her home for palliative care for end-of-life care? You have options here. You just need to choose what’s the best option for your sister.

With services like Intensive Care at Home now, you could consider also doing a tracheostomy, taking your sister home, and potentially have end of life care at home or have rehabilitation at home, trying to wake her up at home. It’s a much more conducive environment than an intensive care unit where it’s loud, noisy, people talking 24/7. Take her home, have a look at intensivecareathome.com for more information there in how we can help to take your sister home.

With Intensive Care at Home, we are currently operating all around Australia. We are an NDIS (National Disability Insurance Scheme) approved service provider, TAC (Transport Accident Commission) in Victoria, iCare in New South Wales, NIISQ (National Injury Insurance Scheme in Queensland) and the DVA, the Department of Veterans Affairs. We have also received funding from public hospitals and from the Department of Health directly. So, that is a really viable option for you. But even if you’re in the U.S. or in the U.K., you should contact us as well for Intensive Care at Home. We can point you in the right direction one way or another. So, I hope that explains, Charles, what your options are here.

If you have a loved one in intensive care and you need help, 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] with your questions.

Also, have a look at our membership for families 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 and Intensive Care at Home related.

Now, I also offer one-on-one consulting and advocacy for family intensity over the phone via, Zoom, via Skype, on WhatsApp, whichever medium works best for you. I talked to doctors and nurses. I represent you in family meetings with intensive care teams so you have someone on your team that speaks the intensive care language, which is critical that you do have insights beyond what you’re just observing visually, or it’s really breaking down the details, really understanding what else you need to look at.

Which then leads me to that we also do medical record reviews in real time to really interpret for you what’s going on in real time and whether intensive care teams are really doing what’s in the best interest for your critically ill loved one. So, if you want a medical record review in real time and a second opinion, please contact us as well. We also review medical records after intensive care if you have unanswered questions, if you need closure, or if you’re simply suspecting medical negligence, please contact us as well.

Now, if you are finding my videos valuable, subscribe to my YouTube channel, 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 questions and insights you have from this video.

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.

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