10 Reasons Why You Need to Get Access to Medical Records When You Have a Loved One in Intensive Care

Hello and welcome to another Intensive Care Hotline and Intensive Care at Home livestream.

Today, I want to talk about, “10 reasons why you need to get access to medical records when you have a loved one critically in ICU or in intensive care.”

I’m your host, Patrik Hutzel, founder and editor and critical care nurse consultant for intensivecarehotline.com. I am also the founder and managing director of intensivecareathome.com, where we send critical care nurses into the home for long-term intensive care patients, predominantly for long-term mechanical ventilation and tracheostomy.

With Intensive Care Hotline we’re providing a consulting and advocacy service for families in intensive care, and we have been doing so since 2013. We have been successfully advocating for families in intensive care all over the world, and you can see what our clients say at our testimonial section or on our podcast section where we interviewed clients, and I can confidently say we have saved many lives as part of our consulting and advocacy.

Now, what else makes me qualified to talk about today’s topic? I have been working in critical care for nearly 25 years in three different countries where I worked as a nurse manager for over 5 years. Like I said, I’ve been consulting and advocating for families in intensive care since 2013, and we have been saving many lives as part of our consulting advocacy, and we have been changing the trajectory of care and treatment for families in intensive care and for their loved ones in many positive ways. Once again, all verified on our testimonial section or on our podcast section at intensivecarehotline.com with client interviews.

Like I said, I’m also the founder and managing director of Intensive Care at Home. With Intensive Care at Home, we’re sending critical care nurses into the home for predominantly long-term ventilated adults and children with tracheostomies, but also for Home TPN (total parenteral nutrition), BIPAP (bilevel positive airway pressure), CPAP (continuous positive airway pressure) ventilation, and otherwise medically complex patients. You can look up more information at intensivecareathome.com.

Now, without further ado, let’s dive into today’s topic. I also want to welcome our viewers that watch this on replay. I also encourage you to type your questions into the chat pad, keep them to today’s topic. We will be going for about an hour. I hope that I will be going through the 10 points reasonably quickly, and then there’s also time for you to talk to me directly here. I will put the StreamYard link in there, or you can in the meantime type your questions into the chat pad and I will get to them as soon as I have a minute, and I’ve gone through today’s topic.

So, let’s dive right into it, “The 10 reasons why you need to get access to medical records when you have a loved one in intensive care.” So, the first thing that I believe is a big issue in this day and age is transparency. Treatment in ICU needs to be transparent. That was a big issue during COVID when all of a sudden, hospitals were able to lock out families who was overseeing what ICUs were really doing, what was happening behind closed doors. Well, we’re getting some horror stories now years later, and we had the horror stories then when families were crying out in despair that they couldn’t visit their loved ones, and they often, during COVID, some of many patients died during COVID with their families separated from them. Terrible.

But for today’s purpose of this video, it’s just about transparency. If ICUs are withholding medical records, what is it they have to hide? What is it that you can’t see? That should be your number one question. What is it that you can’t see?

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Now, I can also tell you with much confidence that no matter where you are watching this, whether you are in the U.S., in the U.K., in Ireland, in Canada, in Australia, and New Zealand, you have the right to access medical records. You have the right. I also want to be very clear that in this day and age, it should be no more complicated than the hospital sending you a link to a URL to a website with a username and a password. It should be no more complicated than that. It’s 2024. So, it should be no more complicated than that. You should have access to the medical records at the drop of a hat, quite frankly. It should take them seconds to give you access to medical records.

If they can’t be transparent with you, your red flags should go up and your alarm bells should ring loud very loudly and very clearly, and you need to wonder what is it that you can’t see, what is it that they’re hiding from you?

That leads me to number two. The second reason why you need to get access when you have a loved one critically ill in intensive care, why you need to get access to the medical records? You need checks and balances, and what I mean by that is how can you verify that what they’re doing is the right thing? How can you verify that if you’re not having access to the medical records?

Yes, part of what we do here at intensivecarehotline.com, we talked to doctors and nurses directly all the time. I’ve just been on a phone to one of the doctors of our clients this morning already in ICU. We can get checks and balances there for sure. We are asking the right questions, and I’m asking all the questions that you haven’t even considered asking, but you can also get a second opinion, and I come to that. That’s actually my next point.

Number three is a second opinion. That’s your checks and balances when you have a loved one, critically ill in intensive care, you have to consider this when you have a loved one in intensive care. Your loved one has never been more vulnerable, and they’ve probably never been closer to death than while they’re in ICU. So, how can you not get access to the medical records?

You can’t be flying blind when you have a loved one critically ill in intensive care. You cannot be flying blind, because you need that second opinion, and you need those checks and balances when you have a loved one critically ill in intensive care.

The way I see it when you have a loved one in intensive care, it’s a once in a lifetime situation that you cannot afford to get wrong. The number of families that reach out to us and say, “Oh, my mom, my dad, my spouse, my child, my brother, my sister whoever was in ICU last year, they died. ICU told us it’s “in their best interest” to die, and we didn’t know there was advocacy available. “We just thought, well, whatever they say goes, and whatever they say must be right.” Well, you can’t be flying blind when you have a loved one critically ill in intensive care. You can’t be not getting a second opinion. If your loved one dies in ICU and you haven’t done your research, how would you feel about that?

What if all of a sudden you find out later, months or years later? Well, there would’ve been other options. You have to keep in mind. Research says that about 90% of intensive care patients survive. So, the odds are in your loved ones’ favor, and I should probably be saying that more often here on my blogs or my live streams as well.

There’s a lot of good things happening in ICU every day. As a matter of fact, the vast majority of things that are happening in ICU is good. People go from critically ill, and they leave intensive care alive, and they get on with their recovery. The reality also is that the people that are coming to us here at intensivecarehotline.com or Intensive Care at Home, they’re stuck between a rock and a hard place. They are stuck in those situations where they need help, and they can see the negativity of the intensive care team. They can see how negative intensive care teams are. They can see that the intensive care team is trying to be negative. They’re trying to wedge them into a corner. That’s when they reach out for help, and rightly so.

So, let’s move on to the next point. Number four, hold intensive care teams accountable when you have access to the medical records. Again, that’s where we come in. We can hold them accountable, and we can say, “Well, for this condition, you can also consider this treatment option or this treatment option or this medication, or we have seen other situations where patients responded well to this treatment.”

Intensive care is not a one size fits all. There are individuals in intensive care beds, not numbers. It’s your mom, it’s your dad, it’s your spouse, it’s your brother, it’s your sister, it might be your child. You don’t want them to approach your family member, your loved one as a number where we take the one size fits all approach. You know your loved one best, you know whether your loved one can fight, what they want. You need to verify in the medical records that they do what you want them to do. Don’t be shy in asking.

A lot of families come to us and they’re almost timid and they’re, “Oh, can I ask?” Yes, you can ask. As a matter of fact, you need to ask for what you want because otherwise they will do whatever they want. Like I said, this is a once in a lifetime situation that you cannot afford to get wrong.

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Let’s move on to number 5 of the 10 reasons why you need to get access to medical records when your loved one is critically ill in intensive care. The next point is you need to learn about your loved one’s condition. You need to learn about your loved one’s condition as fast as possible, and you can only do that if everything is transparent. Once again, how can treatment in intensive care not be transparent when someone’s life is in danger? That’s also how intensive care units build trust, and unfortunately, a lot of families in intensive care that we are dealing with that come to us, the intensive care team has not done a great job in building trust. If everything is transparent, that’s how you build trust. But nothing is transparent in most of the cases that we are dealing with.

Number six, learning about your loved one’s treatment options. Once again, if you are, all of a sudden, faced with having a loved one in intensive care, how do you know that they’re doing all the right things? I’ll give you an example. I can give you many examples, but I’ll give you an example that we see many times. So, for example, if your loved one is in ICU with ARDS (acute respiratory distress syndrome), which is lung failure, which was the case in many cases during COVID. Let’s just say standard therapy such as mechanical ventilation, oscillation ventilation, antibiotic therapy, steroids, maybe nitric oxide, maybe nebulizers, epoprostenol for ARDS aren’t working. So, the next step then is to do prone position.

So, they might tell you, well, that’s all we can do. We can give some nitric oxide, we can give some antibiotics, we can give some steroids, we can give some epoprostenol, and that’s all we can do. Maybe that’s what you’ve been told and many families in intensive, you have been told that over the years we’ve been seeing it and we’ve been dealing with, and I’ve seen it when I work in ICU, but I’ve also seen that. Then the next step is often prone position. That can be very effective.

If that doesn’t work, the next step can be ECMO. ECMO (Extracorporeal membrane oxygenation) is a bypass machine that can take over the function of the heart and the lungs for a period of time, giving your loved one more time to recover lung function or cardiac function. But if you wouldn’t know, you wouldn’t know. You don’t know what you don’t know. That’s your biggest challenge. So, you need to learn about these things as quickly as possible, and ICUs should have no qualms about you asking questions and getting access to medical records. That’s the bottom line.

Let’s move on to number seven. Intensive care is all about paying attention to detail. As a matter of fact, it is so nuanced that it’s like piecing together a 2000-piece puzzle with very small pieces. So therefore, number seven is breaking things down into much needed detail. When there’s patients in intensive care critically ill, there’s dozens, potentially hundreds of things you need to consider all the time.

Goes down to sometimes changing intravenous medications by 0.1 mls per hour, and it will make a difference sometimes between life or death. I’ve seen it, I’ve done it. You might increase or decrease inotropes or vasopressors or vasodilators by 0.1 mls per hour. You might increase or decrease sedation by 0.1 ml per hour. You might increase or decrease the drug concentration of a medication by 0.1 milligrams, micrograms, the devil is in the detail.

You constantly need to evaluate blood results and you need to evaluate the numbers. You need to evaluate ABGs, arterial blood gases, when patients are ventilated or are at risk of needing ventilation. So, the devil is in the detail, and that’s why you can have that second opinion, or you need that second opinion by looking at the details.

You have no idea when I first started working in intensive care, I got overwhelmed by all the details that I need to be paying attention to. Many nurses and doctors would feel that way when they first start in ICU, but then it becomes second nature. But that takes years of studying and years of practice. So, how can you as a family member having a loved one in intensive care get all the details, get all the nitty-gritty and piece together the puzzle without having access to the medical records? So, what we do for our members, for example, we have a membership for families of critically ill patients in intensive care. We look at the medical records daily and we send you a summary of what’s happening, our recommendations, are they doing all the right things and so forth.

Next, number eight, once you have access to the medical records and you have someone interpreting the data and the records for you, which is something, again, we do as part of our membership for families of critically ill patients in intensive care at intensivecarehotline.com, you will be prepared for when you talk to the doctors and nurses. You will be prepared for the doctor’s rounds. We have helped countless families over the years looking at medical records daily and then saying to them, “Yep, and then when you are at the doctor’s round, ask them this, ask them that, point them towards this, point them towards that.” Common sense. But that’s when you get results. Many families in intensive care think they have no leverage whatsoever, and that’s certainly how the intensive care team wants you to make feel. They want you to make you feel like you have no leverage, you have no control, no nothing.

But if you are coming armed with information that you can interpret and you can ask the right questions, your world will change. We’ll go from, well, I have no leverage, I have no power, no influence, no peace of mind” to “Well, all of a sudden, I have an impact here and I can make changes. I have someone who can help me, and I have someone who can give me that second opinion, and I have someone who can hold them accountable.”

Number nine, you also need access to medical records to have the option to send your loved one to another hospital if need be. Now, I’m not advocating to send your loved one to another hospital straight away, but if things are really not going in your direction or in your loved one’s direction, then sometimes the best way is to send your loved one to another hospital and then the other hospital will ask to get access to the medical records anyway, but it’s better to be prepared than not being prepared. Very important. So very, very important that other hospitals can have access too.

Then number 10, and last point, you need to understand what they’re saying, and you also need to understand what they’re saying about you. If they’re documenting things in the medical records like, “Yeah, we’re explaining to the family that prognosis is poor, they don’t seem to understand,” you also need to watch that they do, and what they say is correlating and is matching. It’s way more important to watch what they do, not so much what they say, but you do need to check that what they say in the medical records is actually what they do. So, there’s no discrepancy. Very, very important.

Then because you’re still here and you’re still watching this, I also want to give you a bonus point. Sometimes things don’t go as well, and sometimes things don’t go in your loved one’s direction, then you need to have access to the medical records so you can look for negligence, which is another thing we are doing here at intensivecarehotline.com. We’re constantly reviewing medical records for negligence, for medical negligence, or for nursing negligence. That’s another reason why you need access to the medical records. So, you can’t be flying blind.

You can’t be flying blind mind, and you cannot just take the word from the intensive care team for gospel. Often when we do review medical records, we often see that there’s no correlation between what they say and what they do. You need to ask for access to the medical records from Day 1. Soon as your loved one hits ICU, you need to ask for it. Once again, getting access to the medical records is a right, not a privilege. So don’t be shy in asking.

So, let’s just quickly summarize again the 10 points, the 10 reasons why you need to get access to medical records when you have a loved one in intensive care.

For transparency.
You need checks and balances.
You need to hold ICU teams accountable.
You need to get a second opinion in real time.
You need to learn about your loved one’s condition.
You need to learn about your loved one’s treatment options.
You need to break things down into the much-needed details when you have a loved one in intensive care.
You need to be prepared for the doctor’s rounds to ask the right questions.
You might need to send it to other hospitals in case you want to transfer to another hospital.
You need to understand that what they say and what they do is correlating and you need to understand what they say is accurate in the medical records.

On that note, you also need to say, for example, if they want to talk about DNR (Do Not Resuscitate) or an NFR (Not for Resuscitation), you need to understand if they want to start talking about sending a loved one to LTAC (Long Term Acute Care), this is predominantly for our U.S. audience.

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You also need to understand, for example, today I was talking to a client this morning who wants his mom to be weaned off the ventilator in ICU, she’s on a breathing tube, doesn’t have a tracheostomy yet, but he wants to avoid the tracheostomy. You want to know that there’s a documented weaning plan. There needs to be a documented weaning plan. Or are they, for example, instead of documenting a weaning plan, are they saying, “Oh, we’ll do a tracheostomy and then we’ll send this lady to LTAC”?

You need to be two steps ahead and you can be, if you have access to the medical records, that’s probably my bonus tip. You need to be two steps ahead when you have a loved one in intensive care, but you can only be two steps ahead if you have access to the medical records. That’s number one.

Number two, you have someone that can interpret the medical records to you in real time. Once again, this is something we do here at intensivecarehotline.com.

So, I’m wrapping this up here now for the 10 reasons why I need access to medical records when you have a loved one in intensive care.

If you have any questions now, I’ll take them, and if not, I have other questions that came in during the week that I will be reading out in a minute. So, we’ll be going for up to an hour. Type your questions into the chat pad. You can keep them to today’s topic, or you can ask any other questions as it relates to intensive care or Intensive Care at Home. You can join me live on the StreamYard link that I just posted here. You can talk to me directly here or type your questions into the chat pad.

In the meantime, I’ll just get to the questions that have come in during the week and I will read them out and answer them, of course. In the meantime, type in your questions into the chat pad or join me live on the StreamYard link just by clicking on the link. I can see there’s quite a few people here.

So, let’s get to the first question, which comes in from Bob. Bob says, “Hi, Patrik. What should I include in a medical power of attorney if, God forbid, I ever need ICU and I can’t make decisions for myself?” Well, that’s a great question. It really depends on what you want. Do you feel like if you are a patient in ICU and you want to delegate the power of attorney to one of your family members, you need to be very clear. But in order to be clear, you also need to understand what options are available. Intensive care or critical care is not an easy field as you know. It probably takes for you to do a little bit of research.

I’ll give you just one example that I’ve learned over the years. There’s a lot of people who say, “Well, I would never want to be dependent on life support and be in ICU.” Well, the reality is, if you are going into ICU, chances are you will be on life support temporarily, and chances are you will be getting out of ICU alive.

So, unless you have all the insight and knowledge that I have, and you know what that means, what that looks like. I think most people that have been through ICU and have survived, and they might’ve even said before, I say, “Oh, I would never want to be on life support.” Well, there have been on life support, and they survived, and that’s a good thing.

So, you need to do proper research of how far you would want things to go in terms of treatment in ICU. But in terms of other treatment too, medical power of attorney document is not only for your families, it’s also for hospitals ICUs, but it’s also could be for your family doctor, for your GP, and so forth.

You have to think about what quality of life is acceptable for you. That is also very difficult to think through in advance. It’s a difficult one, but it’s better to have one. You’re referring to medical power of attorney, but you also should be thinking about an advanced care plan. An advanced care plan states your wishes. So, something that needs to be thought through, something that we can also help with here at intensivecarehotline.com in more detail. You could book a call with me if you go to intensivecarehotline.com and schedule a call with me there, then I can walk you through it step-by-step. This is certainly something we can do for you.

Let’s move on to the next question. If you have any questions in the meantime, type them into the chat pad, or join me live on the stream here. I’ve put the stream yard link there and you can talk to me directly here.

We’ve got Dare56 who says, “Hi Patrik. I hope you’re doing well. We had talked one month ago about my mother. She had cardiac arrest while she was in hospital due to an asthma attack. She was already 10 days there. The doctors told me that they made some mistakes.” What mistakes did they make? Is your mom still in ICU? If you could share that with me, if your mom is still in an ICU and what mistakes did they make? What mistakes did they make and what questions do you have? Would be helpful to find out what mistakes they made. What mistakes did they make and what questions do you have? Please share that with me so I can keep the conversation going in here. If you’re not giving me that information, I need to read out the next question so that our viewers get value here.

“First, they gave her permission to leave the hospital at 10 days and after 4 days, my mother got worse coming back.” All right. What happened next? Come back to hospital. I understand. I understand. What happened after that?

“While she was nursed there, after one day she had another cardiac arrest.” What are your questions? What are your questions, Dare56? You can also join me live on the StreamYard link here. That might speed up in getting your questions answered. Here’s the StreamYard link that might just speed things up if you talk to me directly here.

“Doctors told me first we didn’t see asthma coming, and second, we should be faster to regeneration during the CPR”

Look, just give me the full story. I’m answering another question in the meantime, just give me the full story or join me live on the stream here.

So, next question from Katherine. “My husband is in ICU at Wellstar Sporting in Griffin, GA. He was admitted for respiratory failure after having flu and pneumonia. Consequently, his kidneys have taken a upon he’s diabetic and he’s receiving dialysis. A failed bronchoscopy attempt ended him on the ventilator. He finally had the bronchoscopy and has shown difficulty in the weaning process.

After 10 days, we were encouraged to get the tracheostomy easier to wean. We agreed, however, the PEG (Percutaneous Endoscopic Gastostomy) has been their center of attention. My husband has a gastric bypass due to having gastroparesis. They bypassed the portion of the stomach that wasn’t working. No surgeon will perform the procedure. So, it has become a real sore spot between family and staff.

His level of care in ICU has now suffered substantially. He’s unable to use his arms, hands, legs at this time, still extremely weak. The other night it was cold. The temperature was set in his room. In fact, I called at 6:00 AM to check on him. The nurse looked in, said he was asleep. When the 7:00 AM shift change came in, she said she could not get a temperature on him rectally. It was 92.4 Fahrenheit. He was lethargic, BP and heart rate low.

After hours under warming blanket, his vitals returned to his baseline normal. He told us he was freezing all night. I went back over the records to see what was his last temperature had been before it fell, found his temperature had not been documented for days. Definitely a totally different level of care than he first entered the ICU. Feel as we are being pushed and punished over the PEG LTAC issue.”

Well, you should not give consent to a PEG tube, and I don’t think that would be reasonable given that no surgeon would touch him. Why would they punish you if no surgeon will touch him? So maybe you are reading too much into it.

If no one came into his room, they might’ve just been busy, they might’ve just been busy. Maybe if you can bring up the issue with them and say, “Look, he really needs to be warm overnight. That might be as much as he takes to get this issue sorted. I don’t think they’ll be punishing you for the PEG issue because if no surgeon can touch him, then it’s a hospital issue. It’s not your issue. It’s not that you are not giving consent. It’s not an issue of consent. It’s an issue of no surgeon wanting to do the procedure.

But now that he’s got a tracheostomy, he should just start to get mobilized. It’s much easier to mobilize someone with a tracheostomy than compared to a breathing tube. So, you should just be pushing for mobilization to wean him off the ventilator, especially if he can’t use his arms and his legs. He should be having physical therapy every day to get his strength back.

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Also, if he’s still on dialysis, many LTACs can’t do the dialysis. Also, if a failed bronchoscopy ended him on the ventilator. Well, is there some negligence there? I don’t know what happened during the bronchoscopy.

Once again, this comes back to getting access to the medical records. But if no surgeon wants to perform the procedure for the PEG tube, well then this is not your problem. This is the hospital’s problem. Your husband can perfectly live with the nasogastric tube. There’s no need for a PEG tube, especially if he can’t move his arms and his legs, that means he’s not able to pull out his tracheostomy or nasogastric tube anyway.

So, the next steps here are ask for physical therapy daily, ask to get him mobilized daily, ask to put a weaning plan into place and ask for them to keep him warm at night. That might’ve just been an oversight and I don’t see that you’re getting punished here. I think you just need to ask for the right things. I hope that answers your question, Katherine.

So, let’s go back to Dare56 here. Let’s just see what you put there. “The doctor told me first we didn’t see the asthma coming and second, we should be faster to regeneration during the CPR. After 47 days in a coma, my mother woke up, removed the tracheostomy and showed signs of consciousness. She was telling yes or no, but not always, and she was doing things signs like yes with her head.

The neurologist said the neurologist in Germany sent us to an Altenheim zentrum, not even in a rehabilitation center. While everyone was telling us that she’s the right example for rehabilitation.

In the Altenheim, and the Altenheim means a nursing home, they told me that it’s not the right place for her and they don’t know how to help her. They were worried about this decision of the neurologist.

So, I told the decision to move my mother to Greece where doctors are better in Greece because there we come from and my mother speaks only Greek, so speech therapy would be better there. My mother has clinical improvement. She moves better her head. She follows movement. She says sometimes words but not understandable.”

Now, I remember talking to you here a while ago. Let me ask you this, Dare56, does she still have a tracheostomy and a ventilator? Can you clarify that? Because my answer will depend on that.

“She follows movement. She says sometimes words but not understandable.” Can you clarify with me whether she’s still on a ventilator and a tracheostomy? Because my answer will depend on that.

“No, I’m worried because no one wants to answer. No, she is on her own.” Okay, good. Good. Well, what she needs by all accounts is she needs neurological rehab. She needs neurological rehabilitation. Also, if she’s breathing on her own, it’s so much easier for her to go to a neuro rehab. It’s much more difficult for patients to go to a neuro rehab if they are having a ventilator or a tracheostomy. So, from that end, I do believe she’s in a good position to get to neuro rehab.

“She makes 5 days per week physiotherapy and 4 days per week speech therapy.” That’s fantastic. That is fantastic. Is there progress with that? Is there progress with the physiotherapy and is there progress with speech therapy? With speech therapy, it sounds to me like there might be a language barrier. How is that overcome?

But Dare56, to a degree, it’s outside of my area of expertise because my area of expertise is intensive care and Intensive Care at Home. Everything that’s outside of that area is not really my area of expertise. So, what you’re sharing with me here is she needs to go to neuro rehab, but it’s not quite my area of expertise, if that makes sense.

So another question here from Blessed Beauty who says, “Thank you for everything. My sister fully emerged from a minimally conscious state. She’s fully conscious.” Fantastic. That is fantastic. Thank you so much for sharing that. Which is another sign once again that if you have a loved one in intensive care, you should never give up.

The same with Dare56. Your mom has come out of a difficult situation, and you’ve never given up and hopefully she can keep improving. Dare56, “With physiotherapy we’ve seen progress, but neurological due to unwillingness to talk. Clearly, we can see a lot of…” Don’t know what that means.

But anyway, for both comments here from Dare56 and from Blessed Beauty, you should never give up because things will improve, or have improved. Thank you for sharing that. So Dare56, like I said, with she needs to go to neuro rehab. You will need to find a way to overcome the language barrier. That could be that she might be better off going to Greece. I can’t talk about the healthcare system in Greece. I don’t know.

Next question from Rebecca. Rebecca says, “Hi Patrik, what do I do? My mom is in intensive care and she’s not waking up from the induced coma.” So, Rebecca, if she’s not waking up from an induced coma, first off, how long has she been off sedation and opiates? How many days? You haven’t put that in there. I know from all my experience of having worked in critical care for nearly 25 years in three different countries. So, it can take time. It can take time. Both our viewers here, Dare56 and Blessed Beauty, both are saying that their loved ones have been in comas, but God knows how long, and they’ve come around.

Now, if your loved one, Rebecca has been out of the induced coma for 2 days and she was in an induced coma for 2 weeks, very early days. Also, the other thing that I want to stress here is waking up after an induced coma is switching on a light with a dimmer, not like switching on a light with a switch. Can take a long time.

Next, what sedatives has she been on? Has she been on short-acting sedatives such as propofol or has she been on long-acting sedatives such as midazolam or Versed? Has she been on Precedex, which is also more short-acting. If someone has been on propofol for two weeks and they haven’t been on much opiates, they should be waking up quickly. If they’re not waking up quickly, then the next step is to do a neurological assessment like get a neurology consult and do an MRI scan of the brain, a CT scan of the brain, EEG.

Also, if she has been on midazolam or Versed and morphine or fentanyl for long periods of times, and for example, she has also been on chemical restraints and she has been paralyzed and they would’ve used medications such as Vecuronium, Rocuronium, Cisatracurium, to name a few, it may also delay waking up. So, this comes once again down to the nitty-gritty. It comes down to understanding intensive care and what to look for. Which brings me back to our topic today, which is the 10 reasons why you need access to the medical records when you have a loved one in intensive care.

So, Rebecca, if you and I were to look at the medical records, I can probably find out pretty quickly why she’s not waking up. If I couldn’t find out why she’s not waking up, that’s when you need a neurology consult with the CT scan of the brain, with the MRI scan of the brain, with EEG (Electroencephalograph). But other things to consider here are why is she in ICU in the first place? Did you have a brain injury potentially to begin with? I don’t know. You haven’t shared that.

Also, if she’s not waking up, what care is she getting? So, what do I mean by that? Is she getting stimulated? Are the nurses and the doctors talking to her? Is she getting good basic nursing care? Is she getting good bed washes? Is she getting a shower? Is she getting turned regularly? Is she getting good mouth care, eye care, nose care? All of that is very important. Is she getting good pressure area care? Is she getting physiotherapy and physical therapy? Very, very important.

If she’s not getting physical therapy or physiotherapy, how can she wake up? They need to start moving her. That’s assuming she doesn’t have any fractures, she doesn’t have any traumatic brain injury. She’s not waiting for surgery. Also, she’s not hemodynamically unstable.

That’s another question when someone is in a situation like that, Rebecca, is she hemodynamically unstable? Is she on life support such as vasopressors, inotropes? Because she might simply be too sick to wake up. She might just need all that time to wake up while she’s still battling the critical illness. So, that is my advice here, Rebecca.

So, let’s go back here to Dare56. So now you are in a rehabilitation center in Greece.” Good. “Last question, what else can we do for improvement more than physiotherapy and speech therapy? Thank you a lot because you were the only one positive and right. Doctors didn’t expect current stats.”

Okay, sure. Once again, Dare56. I am not the expert on neurology rehabilitation. That is not my area of expertise. That is a question for the neurology department. For the neurologist, it’s a question for the doctors, nurses, physios at the rehabilitation center. They didn’t expect the current situation. Sure, you need to give things time. You need to give things ample time to improve. But neurology rehabilitation is not my area of expertise. You need to talk to the experts there.

Let’s get on to the next question, which comes from Casey. Casey says, “Hi, Patrik. I found you on YouTube while searching for info for global hypoxic brain injury. I’m currently pregnant and the father of the child is in ICU on a ventilator after a drug overdose. He has been sedated on propofol until today, which has been nine days. He’s had a CT scan and several EEGs and MRIs done. He still has brainstem functions, but a very poor prognosis is what they tell me. He reacts to pain in his upper left extremities but not his right.

“His eyes react to light, and he breathes over the ventilator settings. His eyes open and close and produce tears, however, he has severe full body myoclonus as well, which now he’s shaking a lot and runs a fever. I hear nothing but negative advice and outcomes from his ICU nurses with this information and his responses he’s showing should be continued to give him time, like we really think he needs. My name is Casey and thank you very much for the information you get out on the internet. It’s been very helpful this far. So, I’ve decided to maybe ask for help. Thank you.”

Sure. Look, just coming back to the comments that we’ve had here today on today’s show. never give up. You cannot control what is happening right now, but you can control how you respond. If you respond to give up, that’s how you respond and that is your decision. If you respond not to give up and if you respond to be positive, that is also your decision. If you respond and you give up, and you respond and you are negative, that is your decision. So have a think about that.

So also, you’re saying he’s been sedated for 9 days, not a long time. I know for you it probably feels like an eternity. For you it feels like an eternity, but nine days in ICU is not a long time. So, you’re talking about he’s had a CT scan, several EEGs, an MRI scan. He still has brainstem function. What else is going on with the MRI scan of the brain? What else is going on? Can you share that?

“He reacts to pain in his upper left extremities, but not his right. His eyes react to light, and he breathes over the ventilator settings. “His eyes open and close and produce tears, however, he has severe full body myoclonus as well, which now he’s shaking a lot and runs a fever.” A lot of patients in ICU run a fever because they are always prone for an infection, especially when they’re ventilated. They’re prone for pneumonia, they’re prone for a line infection, for a catheter infection or for a bladder infection.

But also, if he does have a brain injury, it could be as simple as that. He’s not able to control his temperature. So, you need to give him more time. It’s nine days in ICU, not a long time. Not a long time, not at all.

Emmet has a question and says, “Hi, Patrik. My mom has a brain injury because of lack of oxygen. She is sedated and has a ventilator. She has no sign of consciousness other than shaking when she is cold. It’s been three days. Will she wake up?” Emmet, where is her brain injury coming from? Why is she sedated and on a ventilator? Did she have a cardiac arrest that led to a brain injury? Also, if she’s sedated and on a ventilator, that might be the reason why she’s not conscious. Have they done an MRI scan and a CT scan of the brain? Will she wake up? I don’t know. I need more information, right? Can you give me more information about your mom’s situation? Did she have a cardiac arrest? That’s number one. Or why does she have a brain injury? Then, have they done CT scan of the brain, MRI scan of the brain? Can you please answer that, and then I can guide you with this further, Emmet.

Also, if you like my videos, just subscribe to my YouTube channel and hit the button and share the video with your friends and family so that we can help more families. “She’s on and off sedation trying to wake her up.” What led to the cardiac arrest? What led to the brain injury? Have they done CT scan of the brain, MRI scan of the brain or an EEG?

So, my previous question was from Casey. So, Casey, do not give up. It’s very early days. They probably need to clear the sedation for your partner, and they need to clear the sedation. They might need to give him some anti-seizure medications if he’s got myoclonic seizures. He probably does need some input from neurology as well. But he needs time, and he might need a long time. So, that was Casey.

I am going to wrap this up now. We’ve been going for a good hour.

Now, once again, 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, comment below what you want to see next, what questions and insights you have.

Like I said, we do have a membership for families of critically ill patients in intensive care where we review your medical records if that’s what you want. You have access to me and my team, 24 hours a day, in a membership area and via email, and you can get access to the membership if you go to intensivecarehotline.com if you click on the membership link or if you go to intensive care support.org directly. In the membership, you have access to me. Once again, you also have exclusive access to 21 videos, 21 e-books that will help you to make informed decisions, have peace of mind, control, power, and influence when you have a loved one in intensive care.

I also offer one-on-one consulting and advocacy over the phone, Skype, Zoom, WhatsApp, whichever medium works best for you. I talk to you and your family is directly. I talk to doctors and nurses directly and you will see that the dynamics will change in your favor once I start talking to doctors and nurses directly. I also represent you in family meetings with intensive care teams.

We also offer medical record reviews in real time, which is one of the reasons why you need to get access to the medical records. Once again, just a reminder, getting access to medical records is your right. It’s not a privilege no matter where you watch this. Don’t let them tell you otherwise. Once again, in this day and age, it should be no more difficult than the hospital sending you a link to a website with a username and a password and that’s it. You should have access to the medical records or send you an app with a username and a password so you’re downloading enough. It should be no more difficult than that. We also offer medical record reviews after intensive care. If you have unanswered questions, if you need closure or if you’re suspecting medical negligence, we’re doing that as well.

Once again, give the video a like and subscribe to my YouTube channel.

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Now with Intensive Care at Home, we are currently operating all around Australia. We are an NDIS (National Disability Insurance Scheme) approved service provider in Australia, TAC (Transport Accident Commission) in Victoria, WorkSafe in Victoria, and iCare in New South Wales, NIISQ (National Injury Insurance Scheme in Queensland), DVA (Department of Veteran Affairs) all around the country. We have also received funding through public hospitals, departments of health, and private health insurance. You can find more information at intensivecareathome.com. Call us on one of the numbers on the top of our website or send us an email to [email protected].

We’re also providing Level 2 and Level 3 NDIS support coordination. We’re also doing NDIS specialist nursing assessments. If you are an NDIS Support Coordinator and you’re looking for nursing care specialist, nursing care for your clients, for your participants, please reach out to us as well. And we can also help you with the advocacy. If you don’t know how to get nursing care for NDIS or for other funding bodies, please reach out to us. We can help you.

If you are a critical care nurse and you’re looking for a career change, we currently have critical care nurse roles for home care in Sydney, Melbourne, Brisbane, Albury, Wodonga, Bendigo, Warragul, in country Victoria. If you are an ICU consultant watching this, we are currently expanding our medical team for Intensive Care at Home. If you want to reach out to us, please do so. We can also help you with eliminating your bed blocks in ICU.

If you’re a hospital executive watching this, we can once again help you eliminate your bed blocks in ICU.

With intensivecarehotline.com, again, consulting and advocacy for families in intensive care, go to intensivecarehotline.com. Call us on one of the numbers on the top of our website, or send us an email to [email protected].

Like the video, comment below what you want to see next, subscribe to my YouTube channel, and share the video with your friends and families.

Thank you so much for watching.

I’ll talk to you during the week and next week, again.

Take care.

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YOUR INTENSIVE CARE HOTLINE - 10 Reasons Why You Need to Get Access to Medical Records When You Have a Loved One in Intensive Care

10 Reasons Why You Need to Get Access to Medical Records When You Have a Loved One in Intensive Care

YOUR INTENSIVE CARE HOTLINE - 10 Reasons Why You Need to Get Access to Medical Records When You Have a Loved One in Intensive Care

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