Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another question from our readers and the question was
You can check out last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED” I am here with a live stream today, where I want to answer your questions if you have a loved one in intensive care. And this is one of the most commonly asked questions for families in intensive care and it’s a question that we get all the time. And today’s live stream is about
Should I Get Access to Medical Records for My Husband while He is in Intensive Care? Live Stream!
Good morning, good afternoon, and welcome to another intensivecarehotline.com livestream. My name is Patrik Hutzel. I’m your host for today and I want to welcome you to another livestream.
So, today’s livestream is about, “Should I get access to my husband’s medical records while he’s in intensive care?” That’s a question we get all the time, and the simple answer is yes, but I will elaborate more on that during today’s presentation.
Before I go into today’s topic, just some housekeeping issues, type your questions into the chat pad while you’re here. You can also dial in live on the show if you like. We’ll take questions at the end of the presentation, and you can, as I said, ask your questions in the live chat pad or you can dial in live on the show. Keep your questions to today’s topic. If you have any other questions, I’ll get to them towards the end of this presentation.
So, what makes me qualified to talk about today’s topic? I am a critical care nurse by background. I have worked in intensive care for over 20 years in three different countries. Out of those 20 years in ICU, I have worked as a nurse unit manager in intensive care for over five years. I am also the founder of intensivecarehotline.com and also the founder of Intensive Care at Home. With Intensive Care Hotline, we consult and advocate for clients or for families in intensive care all over the world. With Intensive Care at Home, we are looking after long-term intensive care patients at home, predominantly with ventilation and tracheostomy, but also on BIPAP or CPAP ventilation without a tracheostomy, home TPN, and anybody that is in need of an intensive care nurse, 24 hours a day at home, we can keep them out of ICU.
With intensivecarehotline.com, we’ve been advocating and consulting for clients all around the world since 2013, and you can see hundreds, potentially even thousands of blog posts now on our website, intensivecarehotline.com and probably hundreds or even thousands of YouTube videos where we give tips, where we talk about case studies for our clients and so forth.
I would appreciate if you give this video a thumbs up if you give it a like, if you share it with your friends and your family, if you subscribe to my YouTube channel for updates for families in intensive care and for live streams, and if you hit the notification bell.
But let’s go into today’s topic, “Should I get my husband’s medical records while he’s in intensive care?” Now, the short version is absolutely yes. There is the old saying, trust but verify. You can’t really verify what’s happening in intensive care without looking at medical records.
The biggest challenge for families in intensive care is simply 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, and simply by you having access to the medical records, it is almost like a whole another dimension opening up for you.
You will find that what the intensive care team is telling you, and what’s in the medical records is often two completely different stories. It’s two different stories and they’re only telling you half of it. They’re only telling you half of it, and if you have professionals like us look at your medical records, we can go through it and talk you through it and explain to you what things mean.
Obviously, it’s part of our consulting and advocacy service. I’m very happy to, on your behalf, to talk with doctors and nurses and I’ve been in countless family meetings, and we can ask the right questions and we get all the right answers. However, you got to have this backed up by access to medical records so you can really see what’s happening in the background.
When I talk about medical records, now, obviously this video I’m doing in 2022, in this day and age, medical records should be provided to you with a link to a website with a username and a password and then voila, there you have it. So, it is no big deal in this day and age to get access to medical records. It should be all online. Don’t get me wrong, a lot of hospitals still document medical records, paper based, and yes, they have to scan the medical records and then upload them into the cloud.
Sometimes it is not straightforward, but again, as a next of kin or a medical power of attorney, you have the right to access medical records. It’s not a privilege, it’s a right. What I will need to clarify here, you will need to be the proxy or the medical power of attorney or the next of kin or the guardian, whatever you want to call it, to access medical records. If your mom, for example, is in ICU or your dad in this situation, but you are not the proxy or the power of attorney, you will actually have a hard time getting access to the medical records.
So let’s just say, your dad is in ICU, you want access to the medical records and maybe your mom, or if your dad is in ICU, your mom is the power of attorney, so it’s your mom who then needs to request the medical records, or if your brother or your sister is the next of kin or power of attorney, it is them who need to then request medical records. So, those legalities need to be clarified.
Sometimes we do have people calling, they say, “Oh look, I’m a family friend, or I’m sort of one step removed.” You have very little chance to get access to the medical records, but if you are the power of attorney, next of kin, proxy guardian, whatever you want to call it, you absolutely have a right. No, it’s not a privilege to access medical records. So basically, once you’ve done that, once you’ve requested that, as I said, most of the time, the hospital should send you a link to a website, username, and password, and voila, you should have access to medical records.
Now, is everything there at a glance? Not all the time. It varies a little bit from hospital to hospital. We review medical records all the time for our clients, and it’s not always there, at a glance, all the time. Sometimes you have to ask them, “Oh, where is this and where is that?” I will go now through a list what should be in medical records. I will go through the list now, so you can actually see what you need to look for and what you need to request.
So, what should be medical records? What documents? So, let’s start with number one, daily doctor’s notes. The doctor should write daily reports and that should be the ICU doctor, but also bear in mind, you might have a specialist coming in, a cardiologist, an oncologist, a neurologist, whatever the case may be. They should be writing reports too. So, you should see the daily progress notes from the doctors and from the ICU doctors, but also from the specialists if they’re visiting at all.
You should also be seeing nursing reports, nursing progress notes, daily. You should be seeing allied health reports such as physiotherapists, physical therapists, OTs (occupational therapists), speech therapists, whoever is involved. That should be part of medical records.
You should be seeing a Glasgow Coma Scale for neurological assessments, and that could sometimes be a separate document or it might be integrated on the ICU chart. It really depends on the setup there.
Next, you should be seeing fluid balance charts. So, in ICU people are monitored for a fluid balance. Basically, you monitor what’s going in and what’s going out, and that is very important. You can’t imagine someone is, for example, two liters positive every day. Basically, having two liters going in and nothing coming out or having three liters going in and only having one liter coming out, that will become a very big issue very quickly if it’s not monitored properly, if it’s not managed properly. So, that needs to be part of medical records. Again, similar to the Glasgow Coma Score, it could be a separate document. Sometimes it’s part of the ICU chart.
Next, a respiratory chart. So, many patients in intensive care are on a ventilator. So, ventilation observations need to be documented every hour and you want to see a trend. We would want to see a trend. If we were to review your dad’s medical records, we would want to see a trend. Is your dad moving towards extubation? Are they being weaned off the ventilator? What are they exactly doing? The devil is in the detail. When someone is in intensive care, the goal should be to be weaned off the ventilator, and by looking at medical records, you can actually see whether that’s going to happen or not, because no matter what the ICU is telling you, if they’re saying, “Oh yeah, we are weaning your dad off the ventilator,” unless you can verify that, it’s just hot air. So, it is really important to look at respiratory charts.
But also, if someone is not ventilated, you still want a respiratory chart because you want to see, are they breathing spontaneously, are they breathing just with room air? Are they breathing with oxygen? Are they CPAP (continuous positive airway pressure), BIPAP (bilevel positive airway pressure) ventilated without a breathing tube? Do they have a tracheostomy? There should then be also a tracheostomy chart. So, the devil is in the detail, and there’s the old saying, “What’s not documented is not done.” I mean, the ICU team can tell you all day long that they’re doing X, Y, and Z. Well, what if it’s not documented? It doesn’t mean anything really.
Next, vital sign chart. So, you want to monitor vital signs, heart rate, blood pressure, heart rhythm, oxygen saturation, blood pressure, temperature, and the list goes on. So, that is really important that this is recorded, and again, that should be recorded hourly, at the minimum. If someone is really critical or they’re coming back from surgery, you want to do it every 15 minutes, potentially every half an hour until a patient is stable. So, you want to see the trends there and you want to see that what they’re saying is actually true.
Next, you want X-ray reports, X-ray films, same with CT reports and CT films, same with MRI reports and MRI films, that all is part of medical records as well. Also, you want the safety checklist. So at the beginning of a shift, the nurse looking after your dad or after your mom or whoever your loved one is, needs to perform a safety check, making sure all emergency equipment is there, making sure the monitors are working, the ventilator is working, alarm limits are set, the suction is working, the resuscitation bag is there, that the crash trolley is in the vicinity, you want to make sure that this is actually documented.
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Next, you want to have some documentation from other specialists. I mentioned in the beginning, you want the progress notes from other specialists such as neurologists, immunology, cardiologists and so forth, but you want the detailed reports and you want the reports potentially from prior to the ICU admission, what has led to the ICU admission, what has been said and been done before ICU.
Next, you want all blood results and other pathology results including but not limited to arterial blood gases, pathology results, any samples that have been sent to check for bacteria, for viruses, like sputum samples that have been sent, urine samples that have been sent. You want all of those results daily. Sometimes it’s been done twice a day, sometimes even multiple times a day depending on what situation your loved one is in intensive care. There are many patients in intensive care where blood tests are being done multiple times a day, for example, if someone is on ECMO (Extracorporeal Membrane Oxygenation) or if someone is on a heparin infusion. So, there are situations where blood and blood results are being done multiple times a day. When someone is on a ventilator, has an arterial line, arterial catheter, blood gases are done again multiple times a day, generally speaking, and you want all of those results.
Next, what should be part of medical records as well is valid medication charts. You want to know what medications is your loved one getting. How often are they’re getting it? What’s the dosage? Does it correlate with vital signs? For example, especially in ICU where people are on inotropes or vasopressors, when have they been started or on vasodilators, when have they been started, for what reason? How are vital signs showing up now that your loved one is on a vasopressor or on vasodilator?
So, what else is going on with medications? Are they on sedation? If so, what sedatives are they getting? Are they on opiates? What opiates are they getting? What’s the dosage? For example, if they’re on strong sedatives such as midazolam or Versed or morphine or fentanyl, is there a chance for example, that as time progresses that they get addicted to those substances and that they go through a lengthy withdrawal? You absolutely want to know what medications your loved one is getting. Are they getting steroids? So, what’s the dosage? What’s the plan to wean off steroids. Are they on any antibiotics? If so, what’s the reason for that?
Now, it goes back to when I said to request all pathology results. That includes any sputum sample tests, any urine sample tests, any blood tests to screen for bacterial growth, because bacterial growth in the sputum, urine, and blood, goes hand in hand with potentially giving antibiotics or not giving antibiotics. It is like piecing together a puzzle. You can’t look at one aspect in isolation. One ties in with another aspect. It’s like piecing together a puzzle.
Next, you want to look at nutrition and the feeding chart. What nutrition is their loved one getting? Do they have a nasogastric tube? Do they have an orogastric tube? Do they have PEG (percutaneous endoscopic gastrostomy)? What’s the nutrition they’re getting? How much are they getting? Are they potentially nil by mouth because they can’t tolerate feeds at the moment in ICU? Do they need to get an alternative nutrition supply such as TPN (total parenteral nutrition)? You got to monitor bowel motions and bowel actions. Is your loved one opening bowels regularly, could be devastating if they’re not opening bowels regularly.
Next, pressure ulcer checks and pressure ulcer prevention. So, how often is the ICU doing the pressure ulcer checks and how often do they turn your loved one to prevent pressure ulcers? Do they do it regularly and do they do it in the interval that is recommended, which is two hourlies? When I mentioned bowel motion a minute ago and when earlier I was talking about fluid balance charts, and maybe I didn’t explain it well enough with the fluid balance chart, you will see hourly urine output and urine output should be measured hourly in intensive care to watch the trend.
Next, code status. So, you should absolutely make sure that there’s a code status documented whether your loved one is for full code or, maybe they’re not for DNR (Do Not Resuscitate), maybe they are for DNR, but you absolutely should check that the code status is documented according to your wishes. Very important that it’s according to your wishes, and the reason I bring it up is, I have seen more than enough in my time in ICU where code statuses were being documented as DNR against patient and family wishes. That’s why I want to highlight this, that if you do get access to medical records, that you get the code status. Very, very important that you check that because otherwise you might find that the ICU team is undermining you and if you’ve got the gut feeling, you should check in with your gut, the ICU team is undermining you, you should be doing that.
So, that’s pretty much what should be in medical records. The other thing that we’ve found just recently when we looked at a client’s medical records is, I’ve been in several family meetings with that client at the time over the phone, and when we looked at the medicals, we found that there was not one of those family meetings being documented. Now, that is a massive concern. I can tell you that whenever there are family meetings, one needs to document what’s being said in the family meetings and given the dynamics that we were encountering there, I’m not surprised that the hospital hasn’t released those notes about the family meetings because they were pretty intense meetings, and we were asking difficult questions and they didn’t like it. So, you got to look at all aspects of what needs to be documented in the medical records. Very, very important that you leave no stone unturned, leave no stone unturned.
You will find things that, it probably wouldn’t be much of a surprise to me, but you will find things in there that you have not considered at all. You will see that people will document, especially the medical staff, they will document, “Oh, we think it’s ‘in the best interest’ for your loved one to have life support removed because your loved one won’t have any quality of life in the future.” Doesn’t mean anything. What is quality of life? I’ve yet to find out how it’s “in the best interest” for someone to die if there is hope, and if there’s valid reason that someone can live and can get better. It’s not up to you or for me to decide what quality of life is acceptable for a patient in intensive care. That is not our job. Our job is to make sure people get out of intensive care alive and then we can look at the next steps. So, that’s it in a nutshell, why you need to get access to the medical records.
Hi Helene, nice to see you again.
That’s why you need, in a nutshell, why you need to get access to the medical records, and you should do it early on. I hate to say it, but you should also expect a little bit of resistance from the hospital because in their mind they think, “Oh, well you won’t understand anyway.” There’s just to a degree, a reluctance from the hospital to release medical records, and they have processes that people go through in terms of, you got to fill in a form. You got to prove that you are the next of kin or the power of attorney or the guardian. Got to get some proof for that. So, there’s few things you need to do before you get access to the medical records.
By the same token, I have not seen a client that can’t get access to medical records as long as they are the next of kin, power of attorney. As long as they meet those criteria, never had a client that couldn’t get access to medical records. Some will get them faster than others, depending a little bit on how assertive they are, depending a little bit on the hospital policies and procedures, how quick they are, but as I said, I’ve never seen a client that can’t get access to medical records ever.
So, be prepared for some obstacles there, for some resistance. Just keep pushing along, work with deadlines. So, what I mean by that is just tell the hospital, “Look, tomorrow by three o’clock I need access to the medical records,” and see whether they can meet that. So, just they know you mean business and just so they know you are serious about this.
Now, another thing that we are often being asked, and there’s I guess, a bit of a dark topic if you will. We have many families coming to us after the loved ones have passed away, and then they want us to look at the medical records. They’re suspicious that there has been some medical negligence and they want us to do a review of the medical records to see whether there has been any medical negligence, to see whether there are things that they haven’t been told, and I can 100% assure you there’s always things in the medical records that you haven’t been told. That’s the whole purpose of medical records, to document what they don’t want to tell you. They don’t want to tell you certain things, and that’s why having access to the medical records is so important.
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So then, what else? You don’t want to wait, yes, that was my point, you do not want to wait to have medical records reviewed when it’s too late. You want medical records reviewed as a going concern. You want the medical records reviewed when your loved one is in ICU so you can verify that what they’re telling you matches what they’re actually doing. Very, very important that actions match words.
Now, I also want to give you the opportunity, type your questions in the chat pad or if you want to dial in on the show, you can call me now on 415-915-0090 for our U.S., North America U.S. That’s again, 415-915-0090. For our U.K. viewers, you can call me live now on 0118-324-3018. That is again for our U.K. viewers, 0118-324-3018 and for our Australian viewers, it’s 041-094-2230. That is again 041-094-2230. I would love to bring you in on this call so we can answer your question live on the show.
Another thing that we’re often finding when we are reviewing medical records, as I said, we often find incomplete records, and you have to ask yourself why are they incomplete? What do they have to hide? Also, if there’s a delay in you getting access to the medical records, again, you should be wondering why is there a delay? Why are they not giving you access straight away? Is there anything they have to hide? They’re always making up these excuses why you can’t have access to the medical records or not quickly and just ignore it. Just keep requesting what you know you want, and what you know you need.
So, very important obviously that you get access to the medical records pretty much from day one. The other issue that we’re finding often is families in intensive care often trust blindly. What I mean by that is they trust blindly to the point of they often come to us, and they say, “Oh, my loved one’s been in ICU for three weeks.” Then I say, “well, why are you calling now? Why did it take you three weeks to reach out to us and why didn’t you call us on day one?” Again, they don’t know what they don’t know, and they just trust blindly. They just think the ICU teams knows what they’re doing, and they will be right. They just think, “Oh yeah, they’ll do whatever is needed and they’ll do what’s ‘in the best interest’ of my loved one,” only to be disappointed, only for families to find, well, they’re not doing what’s in the best interest of my loved one, only to find that the ICU team is negative, and they give the doom and gloom speech and, so forth. That’s why it’s so important that you seek help, external help from day one, that someone can walk you through the craziness that happens in ICU.
Helene, you’re asking, “do I recommend that family members make their own notes?” That’s a good question. Look, as you know, Helene, I am not a lawyer, but I do believe that if you asked that question to a lawyer, I do believe the lawyer would say yes. I have seen many families in ICU when I was working there taking notes. I also know when we work with clients one on one, they also take notes. So, I think, as I said, if you asked a lawyer that question, they would probably say yes, and I would probably say the same. I would still recommend for you to get access to the medical records as a priority because then you can actually compare to what you pick up on, what’s being said, and then you get the medical records, is what’s being said, matching what’s being documented, because that’s what it comes down to.
I also believe that people taking notes helps them with their own understanding. I do believe it helps them with debriefing, with managing the situation, with staying sane. If anything, I think it’s therapeutic, making your own notes, yeah, do that. Do that if it helps you, and maybe as time goes on, you can look back and you can see, “Oh, yep, this is where we were a year ago and now, we are making progress, and now my family member is finally home and look at how far we’ve come.” So, I think it’s a good idea to take notes.
I can’t stress the importance of getting access to medical records. I can’t stress that strong enough. It’s an absolute must. It’s an absolute necessity in order to make informed decisions, to have peace of mind, to have control, to have power, to have influence, you must have access to medical records no matter what.
Again, I’ll tell you what we’re also seeing, you can access medical records retrospectively, but you can also access them now pretty much live. There is a website called mychart.org and most hospitals are aligned with that mychart.org, and you can access usually medical records through that website, and you often get daily live updates. That should be the ideal scenario. If a doctor writes a report, you should see that online as quickly as possible, and if there are delays, again, you should be wondering why. Very important for you to access medical records.
So, I think that is it for today in a nutshell.
If you have any other questions, please type them in now or again, call me live on this show if you like. There’s still time to take a couple of questions, if you want to call in on 415-915-0090 for our U.S. viewers, 415-915-0090. U.K. 0118-324-3018, U.K. 0118-324-3018, and Australia 041-094-2230. You can dial in live on the show and get your questions answered.
So, today’s topic, just in summary, “Should I get access to medical records for my dad while he’s in intensive care?” Absolutely, yes. I have broken down in this presentation what should be part of medical records. I have explained why you need to have access to the medical records. I have explained that it’s an absolute necessity and that you can only verify what’s really happening with your loved one if you can have access to all medical records where there’s no hiding behind paperwork. I have explained that it’s your right to have medical records, assuming you are next of kin, power of attorney, guardian, whichever term is appropriate in your situation. It’s a right, it’s not a privilege. So, go for your rights, and then the ideal combination is as part of our consulting and advocacy service to talk to the doctors directly and look at medical records, and we offer that as part of our membership. We offer that as part of my one-to-one phone and consulting and advocacy options. So, there’s a variety of options for you to get help.
Now, I want to slowly wrap this up for today. If there are no other questions.
Again, if you like this video, give it a thumbs up, share it with your friends and family, subscribe to my YouTube channel for regular updates for families in intensive care and the weekly live streams. Comment below what you want to see next, what questions you have, what insights you have. I’m very happy to do a live stream around your wishes, of course, and click the notification bell.
If you have a loved one in intensive care, go to intensivecarehotline.com. Call us on one of the numbers on the top of the website or send us an email to [email protected].
It’s a pleasure, Helene. You’re very welcome. I’m glad I can help, and you’re welcome Modema. You are very welcome. I’m very glad that I can help, and if there are no other question…
Oh, there’s Alex. Hi Alex. Nice to hear you from you again. “My mom isn’t a good candidate for dialysis. Her body rejected it many times. Wanted to know your thoughts.” Alex, what do you mean when you say your mom is rejecting dialysis? When you say rejecting dialysis, I tell you what I’ve seen, what I understand as rejecting dialysis. So, the only time I’ve seen people “rejecting dialysis” in ICU is if they are hypotensive. What that means is they have a low blood pressure and because of the low blood pressure, the body just can’t cope with dialysis. Can you explain a little bit more? “Her heart rate raises really high, and the blood pressure drops.” I see. Okay, great. That explains to me. “Her heart isn’t well.” That explains Alex. Okay, that explains.
So, few things there. If that is the case, Alex, number 1, irrespective of that she needs dialysis, she might actually be dehydrated and she might need actually some fluids to begin with. Depending on what her hemoglobin is like, she might need a unit of packed red blood cells. If her albumin is low, which often is for kidney failure, she might need a little bit of albumin, and that in and of itself, a unit of blood or some albumin might be enough to get the dialysis going again. Now, if that doesn’t work, you got to look at inotropes or vasopressors to bring up the blood pressure before she goes on dialysis.
“They try to give her medications to balance things out, but she still rejects it.” Do you know what medications they’re giving her? “They gave her albumin and fluids and those…” Yes, and what medications are you referring to? Are you referring to inotropes or vasopressors such as epinephrine or norepinephrine, vasopressin, phenylephrine. Are you referring to those type of drugs? Do you know? Would be helpful to know what drugs you are referring to, would be very helpful to know?
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“Yes, for her heart.” Okay, so then if that is the case, the question is what else is going on? Is she in heart failure? Do you know if she’s in heart failure? Is she septic? Is she battling an infection? Do you know any of that? So, the question I have, is she in heart failure or is she potentially battling an infection? “Yes, she is.” She’s in heart failure or she’s battling an infection. Which one? Which one is it, Alex? “Battling sepsis and infections.” So, you can rule out heart failure.
If you can rule out heart failure, then if she’s septic and having an infection, she’s probably on antibiotics. Do you know what infection it is? Can you tell me a little bit more about the sepsis and the infection then I hopefully can help you as a next step. “Many antibiotics,” So, here’s what happens, probably Alex, as long as she hasn’t gotten rid of the infection, her blood pressure will probably be low. “Bone marrow infection, UTI (urinary tract infection).” If that is the case and they can’t get that under control, she will have a very hard time maintaining a blood pressure so she can have dialysis. It’s a very fine balance for them to get the blood pressure and the fluids under control so that she can go on dialysis.
When you say she can’t have dialysis, is this an ongoing issue? Has this been for a few days? Can you tell me how does it unfold? “They don’t want to give her dialysis anymore because they said she will have a cardiac arrest again.” The reality is, Alex, that if she drops her blood pressure, she might have a cardiac arrest. If she drops the blood pressure as a result of going on dialysis, she might have a cardiac arrest. “They tried numerous times. It’s been more than a week without dialysis.”
Do you know if her kidney markers, such as urea, creatinine, or BUN levels are going up? Do you know whether the kidney markers are out of whack? Do you know any of that? Do you know, Alex, if the kidney markers are out of whack and do you know if she’s producing any urine at all? Because if it’s been a week or over a week, and she’s in acute kidney failure, that’s very concerning. “She never had issues with dialysis before. She has very poor kidney function.” I see, that is very, very difficult. That’s very difficult.
“Her entire body is swollen.” Of course, of course. Her entire body is swollen and that could be part of it. It could be lack of albumin and potentially lack of red blood cells. I guess, especially if there’s stuff going on in the bone marrow, your mom might have difficulties producing enough red blood cells. Do you know if that’s the case? Alex, I do know you sent me an email a couple of days ago or yesterday. I’m, just trying to dig out your email. I have read through it briefly, but I don’t think this will end well, she might only have one more week because she hasn’t had dialysis for almost a week half.
Yes, I have the same concern there, Alex, that if she’s not getting dialysis quickly that she may not make it. Alex, you sent me the email a couple of days ago or yesterday. Alex, is it okay for me to read out your email because then we can break it down? I don’t want to read it out without your permission, but are you okay if I read out your email here and then I can address your points? It’s okay if you don’t. Yeah, are you okay Alex, if I read out your… Okay, all right, I’ll read out your email.
“Hi Patrik. I just received word that my mom is no longer a candidate for dialysis. She had dialysis for months without any issues, but the doctor said every time they try to give her dialysis these past two weeks, her blood pressure drops and her heart rate increases.
They gave her medicines to try to help balance out her heart and blood pressure to do dialysis, but with no success, and they’re saying she’s not able to receive dialysis and to have a meeting with the doctors about moving forward. Doctors are afraid to continue to try to give her dialysis because her heart is weak and could pass away on the dialysis table from the changes in her heart and blood pressure.
They try every other day to do it for the past two weeks with the same problems and say she’s not been a good candidate for dialysis anymore. She’s been in a coma for close to three months now with a tracheostomy and has UTI (urinary tract infection), bone marrow infection. Her body’s all swollen with fluids.
We have spoken on the phone and your YouTube lives, and I think this will be the end for her. If she’s not able to receive dialysis, she doesn’t have a chance of survival. From what I researched. I wanted to know your thoughts.
Thanks so much for your time and everything you do.
Now that gives me more context, and it really sounds to me, Alex, that if they can’t do dialysis because she’s in heart failure and because her blood pressure is low, I fear for the worst here as well. I’ve seen many times that if you’re not maintaining a certain blood pressure, you won’t be able to do a dialysis successfully. Without a certain blood pressure, the body is unable to extract blood going through a dialysis machine, and if the kidneys aren’t getting cleaned, inevitably your mom will die of fluid overload because the heart won’t cope. Fluids will leak into the lungs and on top of the infection that you’ve already shared. I’m very sad to hear how this situation unfolds here.
I fear that if no dialysis can be done over the next few days, I fear for the worst. “Just toxic blood in the system”, and that’s correct. It’s a combination of heart failure and the sepsis. I guess, one hope for me would be that they would get control of the sepsis. That would be one hope for me, and if they could control the sepsis, then they could potentially work on the heart failure issues, but it sounds to me like both need to happen.
Now, what you could ask for, especially if she’s in heart failure, do you know what led to the heart failure? Is it cardiac arrest? Is it a heart attack? Is that what led to the heart failure? Do you know? Do you know what led to the heart failure? Because if she’s in heart failure… “I said try it one more time because they didn’t even want to do it again. They said they only would do this for me once more because they explained the risk of cardiac arrest.” “She’s always suffered from high blood pressure, but now it’s low.”
I think from memory, Alex, help me, from memory, she did have a cardiac arrest, didn’t she? If she did have a cardiac arrest, it’ll be fair to ask for a medication. “Yes, she had two strokes and a cardiac arrest.” Alex, you could ask for… “and that’s caused her coma,” …for a medication to be given called Levosimendan. If she’s in heart failure, that might help with the heart failure. I will email you the name of the drug now. I’ll just hit reply to the email. It’s a drug called Levosimendan. Ask them if that could help her with her heart failure. I’ve just emailed that to you. Do that, but yeah, if she can’t go on dialysis, I fear for the worst. That’s very sad. That’s very sad.
Do you know why they can’t control the infection? Have they given you any insights there? Are the antibiotics not working? What is it? If she’s in heart failure, you could also look at her having medications such as dobutamine and milrinone. “Yes, she’s had the same infections for a long time, and they can’t control it.” That’s a tough one. “She’s becoming resistant to them.” Sure, sure. I would say they need to get control of the infections first if they can get rid of it, and then they can start working on the heart. I don’t think… Yeah, sure, “The antibiotics”, I get that, but even so I think you should ask if they want to give Levosimendan or Dobutamine or Milrinone. I’ll send you the Dobutamine and Milrinone as well. If she’s in heart failure, that might help as well. Now I’ve been going…
“She’s under the strongest steroids and antibiotics they have.” I guess in this situation, Alex, I do believe you will need to prepare for the worst, and I know you’re probably spending a lot of time with your mom already. I would imagine that the time you can spend with your mom might be limited and maybe you want to try and spend some quality time with her.
I have been going for about 50 minutes. I need to wrap this up today and I want to thank you.
“Yes, you called your brother to come and visit.” Yes, I think that’s a good idea, and make sure that your mom isn’t going to suffer if she’s going to pass away.
You’re welcome, Alex. You’re very welcome.
Okay, I want to wrap this up for today. There will be another YouTube live next Saturday around 8:30 PM Eastern Standard Time in North America, 05:30 Pacific time in America. It’ll be 10:00 AM Sydney, Melbourne Time in Australia, Sunday morning, and I look forward to seeing you all there.
I do have a topic for next week. Next week it will be, “10 things you need to know about tracheostomy in and outside of intensive care.” That’ll be the topic next week, “10 things you need to know about tracheostomy in and outside of intensive care.” So, I’m looking forward to seeing you all next week.
Share this video with your friends and families. Give it a thumbs up. Subscribe to my YouTube channel.
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].
I want to thank you for all your support. I look forward to talking to you again next week at the same time. Have a wonderful Sunday and a wonderful weekend.
Take care for now.
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