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 in the last episode was
You can check out last week’s question by clicking on the link here.
In this week’s PODCAST, I have an interview for you with one of my clients Ileana, who lost her 91 year old mother in LTAC. Ileana lost her 91 year old mother who initially was in Intensive Care because of pneumonia, became ventilated, ended up having tracheostomy and PEG tube, shifted to the Long Term Care Facility (LTAC) and eventually died.
The interview is another testimony that if your loved one goes into LTAC they are often destined to die, because LTAC’s simply don’t have the resources, the expertise, the “know-how” and also the compassion and empathy that is required to look after critically ill Patients on life support!
The interview is also another stark warning that if you don’t consulting and advocacy early enough, it’ll be very difficult for you and your family to steer the territory of Intensive Care or LTAC!
Interview with Ileana whose mother passed away in LTAC after ICU stay!
You can listen to the interview here or read the transcript below
Patrik: 00:08 Hello and welcome to the intensivecarehotline.com podcast. Intensive care hotline.com, helps families of critically ill patients in intensive care to instantly improve their lives so that they can make informed decisions, have more control, more power, and more influence. I’m your host Patrik Hutzel, founder and editor of intensive care hotline.com and as part of our podcast and interview series. Today I’ve got a very special guest Ileana from Chicago in the United States. Hi Ileana. How are you?
Ileana: Hello. I’m fine. How about you?
Patrik: I’m really well. Thank you. Thank you Ileana for coming on to this interview. I really appreciate it and I really hope that our listeners can learn from your and your family’s recent, not so good experience in one of your hospitals. Ileana, can you share more about what’s happened with your mother in intensive care and then in long term acute care?
Ileana: 01:13 Yes. I will give you a little bit of history. So my mom was perfectly, she was only taking blood pressure medication and a blood thinner, so we used to take her to the hospital every two weeks for a check up and everything was perfectly fine until one day she was a little bit congested and we took her to one of the doctors and they just said, uh, we will give her antibiotics and hopefully that will kill her pneumonia. So, um, she was, she was on antibiotics, needless to say, we made that she got a little bit more congested and we ended up in ICU where they put the oxygen mask on her and I will start with the first urgent care visit that we had, right, in ICU. So, um when the oxygen masks, um, I think she was on it probably for two or three days. During which time the doctors were trying to talk me into letting her go comfortably. Now this was my first time in a situation like this.
Ileana: So I had asked them, how do you measure comfort? What do you mean by letting her go comfortably? We’re not talking about euthanizing here or anything like that we do to animals? Right. Um, so what are you going to do during this process? Obviously they were not clear on answering my question. However, they were putting a lot of pressure on me. I’m saying finally that they would give her some medications, can lead her to make her comfortable. So my questions were, okay, so you haven’t diagnosed my mother with anything other than the fact that she’s on the oxygen mask, right? She’s not breathing properly and this is what you want to do.
Patrik: And just quickly there for our, for our listeners. How old was your mom?
Ileana: So my mom was 91, but a healthy 91! Right, age is irrelevant.
Patrik: Absolutely. I could have agreed with you more that age is irrelevant.
Ileana: 03:49 Yes. However, I think that I think that in the medical field they scrutinize the age too much and I have discovered the fact that you don’t want to go into ICU and just from looking at all the patients, because I have a PhD in Mathematics and I’m very analytical and I just was taking a look at all the rooms that were in the ICU unit. And I thought, geez, all of these people are sleeping, now aside from the fact that all of those people were sleeping, um, probably tranquilized no doubt with narcotics, because I came to understand what each little bag was, especially a bag that had a brown cover over it, right? Not because it didn’t like light or it wasn’t good for that particular medication to have light. And I discovered in one instance with my mom that that was an antibiotic, I think. Um, it wasn’t addressed obviously. But all of these people did not have advocates because they did not have people that were visiting them. So they were just waiting there, yes, waiting there to die.
Patrik: Right. And that was in the ICU.
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Ileana: 05:20 That was in the ICU. So this particular ICU had a director and a couple of doctors that were coming and going. There were many residents that were probably in their twenties, 24, 25. These, what I was shocked about is the fact that these residents have the same exact phrase. If you would ask them a question that went beyond what they were taught to say they didn’t know how to answer that or maybe they were not supposed to answer it. So I went to high school in a communist country. This was an educational in Bucharest at the time, you know, um, it was, even though I was a US citizen and I was very well respected, um, obviously, you know, they had their processes and procedures and you know, things that some people had to say, right, because they couldn’t give any information. So in this case in ICU here, I felt like I’m in the same situation. So for example, the resident will come to the room. Hello. Hello. Well, we’re making her comfortable. I said please tell me that you’re making her comfortable and I will never forget this. And, um, the resident said, but there’s this medication. What medication? It’s just a little bit of a pain reliever medication. So this is when I was at the beginning stage of my ICU experience.
Ileana: 07:06 I said, please tell me exactly what the medication is. Well, later on, after digging into the system, logging into my mom’s file and questioning the doctor, setting up a meeting with one of my friends who has a PhD in Biology with the ICU doctor, you know, I received the information so they were giving my mom a heavy duty narcotics, which was, I don’t know how to pronounce it properly.
Patrik: 07:41 Um, if you can correct what was it? Dilaudid Morphine? Morphine, morphine is an opiate.
Ileana: 08:01 I called it a painkiller opiate.
Patrik: And can I just say on this, you mentioned a very important term in the beginning, Ileana, which I think we really need to elaborate on. You mentioned that term euthanasia and I think we really need to pause there for a second because I remember when you then first contacted me. That was one of the first things you said that you felt like your mother was getting euthanized. Now, you know, I, I do believe from experience if that euthanasia is wide spread in ICU now for you coming in, as you know, you know, it sounds like that was your first experience. That must’ve been a complete shock, which I believe it was. You know, and as I said, I can only stress that euthanasia is widespread in ICU, it’s just being “sold” differently to families to get them to agree to it. So obviously one of the first things…That was one of the first things you picked up that you felt from day one your mom was meant to be euthanized.
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Ileana: 09:15 Correct. They were not looking at the root cause of the problem. I believe to this day that the root cause of the problem, that she had a little bit of fluid on her lungs (pleural effusion) because it was on the lower part of the lung, to the left, and I have requested all the medical records, um, was due to the fact that her kidneys were not functioning. So they were talking about killing her, euthanizing her essentially with opiates is, right? Because the same thing, they do that in the US to animals all the time. That’s an injection and that’s it, right? This is the drip.
Patrik: Yeah. And your mother, at that point in time, was your mother still compos mentis? Was she still in a position to make her own decision?
Ileana: She stands in a position to make her own decision, meaning that she, her brain was not affected by all this. I could not talk to her because they had her on this until I asked them to reduce that and I had to put up a fight, a very big fight with them.
Ileana: 10:39 Until they reduced and reduced and reduced, right, the dosage. And my mom would be able to open her eyes and obviously I couldn’t, she couldn’t talk to me because of the fact that she had oxygen mask. Then they intubated her. I’m not even sure if she required intubation because all of this happened so fast and I was learning so fast and I engaged you because I would go home at night and I would google all of those like ICU help, ICU help, because I was trying to figure out how am I going to deal with this because I know they were lying to me. So obviously it took me a while to find you and have the right approach. But by this time they ignored her kidney function. You know she went septic because she had all of these infections. Not only that, but I had to fight the fact that, you know, I said, aren’t you feeding her? Oh, but if we, if we put G-tube into her, you know, that would be really bad. And so everything was thought of starving her on top of it. So they were talking to me out of even feeding her. Finally, finally they decided to, to feed her and on that particular day when they were supposed to do the surgery, um, her haemoglobin went down, obviously not eating, not having nutrition, being stroking, bedridden.
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Ileana: 12:22 So they did that. And at one point they stopped that. I asked them why did you stop it? Well, because it’s not being distributed properly and we don’t know whether she has a blockage, so they did an x-ray, no blockage, but really once she got to the second hospital, because she went to Holy Family Medical Center and wouldn’t send a rat there honestly because they’re not experts in weaning at all. I watched them do it.
Patrik: But you were being told they are experts? Is that correct? Right.
Ileana: Yah, I was being told that their experience was at the top. Well, their inspections are the same as, let’s say, mine inspection of a doctor coming into the room just looking at the patient two seconds and walking out and charging $300, for that time. Can you imagine how much money that doctor is making for each patient they have? That is not weaning to me because they have no clue. They don’t even. They didn’t even use a stethoscope…
Patrik: Right. And to, for clarification for our listeners, for those of you who don’t know what we’re talking about, your mom went from ICU to a long term acute care facility.
Ileana: Yes. LTAC.
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Patrik: If you can elaborate a little bit. So she was in ICU, she was ventilated. She then ended up with a Trache or with a tracheostomy.
Ileana: She ended up with a trache, she ended up with a G-tube and then they brainwashed me that the best thing would be for her to go to an LTAC and I went back and forth, back and forth. You know, I read ratings about it. I thought, I don’t think an LTAC is good. Finally they said no, she should go into an LTAC because she would be weaned and then she can have therapy. So I was thinking, if they have therapy, you know, fantastic. So this is what happened in the ICU on 5/31/18, they, at this particular hospital, disconnected my mom from the ventilator. And we came in there before the ambulance was supposed to come and get her to take her to the LTAC and they said, “Look at your mom, she’s breathing on her own”. Ha ha ha, my mom was breathing on her own for four and a half hours that morning. Then they transported her to the LTAC. Now I am still confused to why they did that.
Ileana: 15:20 Therapists have taking her off the ventilator, transporting her only without oxygen and she gets to the LTAC facility. They put her in ICU stating that, “Oh, she was disconnected!”, well, of course my mom was in panic mode for you know she didn’t know that she was transported.
Patrik: Right, right. Yup, yup, unnecessary stress. But let me ask you this. One thing that we’re finding and I don’t know how it was, how it unfolded in your situation. One thing that we’re finding is, especially in the United States, when people are having a tracheostomy, the they get pushed out of ICU very quickly. Can you elaborate on the timeframes between having a trache and then being pushed into LTAC? Because from our experience that happens very quickly and number two, patient and families often don’t know that it’s happening, it’s sort of almost mentioned in the last few days after the tracheostomy has been done. People are being told, oh now it’s time to go to our LTAC and they don’t even know what’s happening. Can you elaborate a little bit on, you know, how did that happen after the tracheostomy? How much time was from the time the tracheostomy was done then going into LTAC?
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Ileana: So, the tracheostomy was done on, um, 5.
Ileana: 16:43 I’m looking at the charts here because I have it in front of me. A 5/17 and she was um, she was taken to the LTAC on 5/31, so a couple. A couple of weeks.
Patrik: Okay. That’s not too bad. That’s actually longer than what I’ve seen with other clients within a 48 – 72 hour window. Okay. That’s actually not too bad. Or did you feel pushed?
Ileana: But, they were trying to do it sooner. However, they were trying to do it sooner on 5/21, they did the PEG right and they discovered that older, maybe a blockage or haemoglobin went down because the only reason she was not taken sooner was because they gave her blood, you know, things like that.
Patrik: I see. So she wasn’t quite ready because she needed that intensive treatment that they couldn’t provide in LTAC. That was the reason we. Which then again, beckons the question, was she ready to go into LTAC in the first place or was she just being pushed out because they needed the bed?
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Ileana: 18:03 So I think, I think that she was being pushed out because they didn’t want to deal with that any longer. Um, it was another patient because I asked them, I said, why are you pushing us to an LTAC? What is your relationship to the LTAC? And they said, oh no, no, no, she can stay here however long. But then at the same time they were pushing her out. Now there was a lady that was much younger in her fifties that was critically ill in the room next door to her that had cancer. And she was intubated with a tracheostomy and so on, in really, really bad shape. Her husband did not allow them to change for her, so, and thinking I should have done the same thing, um, because I think the LTAC is just a speedy way of euthanizing people basically.
Patrik: 19:03 Very much so. And if you had contacted me at the time when the tracheostomy was happening, I would have definitely advised you to keep your mother.
Ileana: 19:12 And I showed up. Unfortunately, unfortunately I found you afterwards. Yes.
Patrik: Sure, sure.
Ileana: I totally agree. I agree.
Patrik: 19:22 We know from experience, LTAC is just not designed to look after ventilated patients. But here it’s, here it’s. Here is where it gets interesting. And, and we, we come to that a bit later. I remember then in the last stages of when we, you know, when I was consulting you, um, it looked to me like they had not, they didn’t have the experience nor the equipment to safely look after your mum who was in such a critical condition. Right? I mean, the last few days of your mum’s life, to me from the, from what you’ve shared with me at the time seemed to be like a disaster really. I mean, can you elaborate on, on what, what happened then in the end and how did that make you feel?
Ileana: 20:11 So, it was a total disaster. I wanted to ask you, If they are saying, okay, if it’s high layer trache on 5/29, is that the actual tracheostomy that they did?
Patrik: 20:36 Can you read that out again please?
Ileana: 20:39 Um, it says a n e s yeah. Anaesthesia for the Esophagus, a t, thyroid, larynx, trachea and the lymphatic system. So I think yeah, because the 1675. So that’s gotta be, so the tracheostomy they did um, 5/29 and she was taken to the LTAC on 5/31.
Patrik: 21:13 Right. So it was only a couple of days, really.
Ileana: 21:16 So it was only a couple of days. Correct. Sorry, so I wanted to correct that because I was thinking..
Patrik: 21:22 Yeah, no, no, which confirms what we’ve seen with, with other clients. You know, they, they often come to us and they say, hey, they wanted to do with tracheostomy on, on my loved one should we consent into that or not? My response really is, it depends, if all efforts has been maximized to get the breathing tube removed and they’re still saving. Yes, the tracheostomy has the time into play. However, then the next step, for these patients get sent to an LTAC because of the tracheostomy and they’re not ready. The only place where people can be weaned off the ventilator safely is ICU or intensive care at home. Right. LTAC’s are just not geared up for that.
Ileana: 22:08 And I could see that because in a hospital environment that this where she got all the infections right, aside from the fact that her, so, so then they stopped the feeding, right, at the LTAC and I questioned that and they said, well, you know, that it’s leaking, so I said, it’s leaking where? it’s leaking in the tissues. And I said, isn’t that abnormal? No, it’s normal. That’s what the Gi doctor told me, that it is normal for food to go into the tissues. So she has a bacteria in her stomach. She had a bacteria via the catheter. She had all kinds of bacteria from the trachea, right, as well. And basically she was septic. So then they told me, oh, your mom, your mom was septic. Okay, so my mom was septic, but you ignored the dialysis because the doctor laughed in my face. Oh, we don’t do dialysis on a 91 year old. Right. I think I told you I got into it with a, with a kidney doctor. And then by the time I changed the kidney doctor to a different practice, it was obviously too late. So I think there’s a lot of neglect here. There are a lot of questions that need to be answered. Um, aside from the fact that it’s my mother, right, I think that a lot of people, right? The whole population, they do not know how to do research. I’ve seen many elderly people that were sitting there crying and they weren’t even questioning anything.
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Patrik: 24:08 Right?
Ileana: 24:11 So, unless, unless you have somebody like you as a consultant, right, just like they hire consultants in my field and information technology. You know, we’ve come to the point where we need to hire consultants for the medical field so that we can fight for our rights, you know, for our health, um, and what these doctors are doing.
Patrik: 24:34 Yeah, absolutely. And, and you know, the reality is the system is flawed. You know, it’s all about money and beds and you know, how can we shift patients around, you know, it’s about, about personal views because some doctors might think, oh, well your mother is 91. You know, she’s probably coming towards her end of life. For them your mom is just a number. They wouldn’t know that your mom was perfectly healthy up until the day of hospital admissions. She probably had a good quality of life. It just looking at the number, your mom is 91, she’s probably dying and they made up their mind.
Ileana: 25:11 Yeah. They don’t want to deal with it. I think, you know, I think honestly, I truly, think they do the same thing with younger people. I would be, I would be afraid to go in an ICU environment
Ileana: 25:29 and I hope I never have to because the first thing they’re going to give you is give you that narcotic, opium, whatever, because they have to make money for the pharmaceutical companies. And, If you look, if you look in every magazine, there’s an ad about bipolar depression. Some kind of opiate that somebody has to take some time. Um, there’s so much brainwashing on TV. Every commercial has anything and everything about medications. The doctors are brainwashed the same way and I have to fight with this doctor, you know, in the LTAC to tell them what do you, what do you have my mother on because they have a patch of baclofen and my friend is an oncologist at Roche Medical Center and I was running all this information by her and she said that’s too high of a dosage for your mom. Your mom is little. So I had to fight with them to reduce dosage from 60, whatever, you know, to 10 so that I can talk to my mom and obviously she couldn’t talk fluently, but she was with it and she, you know, she wouldn’t mimics she would eye contact, she would frown, um, when, because I explained to her about the infection about everything. So, um, so basically, aside from the ignorance to that, on the death certificate, he wrote that my mom has dementia. Now my mom speaks another language. She actually speaks two languages. I talked to her in another language. So in my letter to this stupid doctor, I said, did you, do you speak Romanian, because you know, unless you talked to my mom in that language, you can’t really tell whether she’s demented or not.
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Patrik: 27:43 Absolutely, so, so for example, it’s not only that, my another question Ileana is really, did anybody during this ordeal asked your mother what she wants? Did anybody ever take your mother’s wishes into account?
Ileana: 27:54 I’m sorry, I have to close this phone. Okay, did anybody ask me? I’m sorry. Anybody on
Patrik: 28:01 Did anybody throughout your mother’s, throughout her stay in hospital what she wants?
Ileana: 28:06 No, no. They did not ask her, they did not bring a translator which they could have done. They could care less. At every hospital has the option of getting a translator, let’s say, if they were dissatisfied with the fact that, you know, she didn’t want to speak to them fluently, but with a trachea, you really cannot talk right? So, he thought that she’s demented because she always, he got her as a patient with a trachea, you know. So, um, it’s really appalling. And if we have to believe in these people, just because they’re doctors. No.
Patrik: 28:54 No. That’s very, very scary what you’ve experienced there. It’s very scary. It’s very scary. Not an unusual situation because as you know, we’re dealing with those situations everyday of the week really where people come to us in similar situations, you know, and it’s really scary what people experience, you know, I mean, you basically almost witnessed the death of your mother and feeling helpless.
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Ileana: I did, absolutely I did!
Patrik: And not knowing where to go to not knowing what, what are your rights, how can you stop this from happening? Then what I also realized, especially in the last few days when your mother was on vasopressors/inotropes for low blood pressure, what I ought to know, right? What I do remember at the time was normally when patients are on vasopressors/inotropes, they need to have an arterial line in to measure blood pressure continuously and that didn’t happen, which to me is medical malpractice. That is medical malpractice and that to me is absolutely scary that these things are happening in hospitals that consider themselves, you know, top, top class hospitals and it’s medical malpractice and you know, unless you’re talking to somebody like myself, you wouldn’t even know what’s being required when patients are on vasopressors, you know, they can tell you all sorts of things.
Patrik: 30:25 They don’t even have to tell you what’s best practice or what’s required. They just get on with it. They don’t. It sounds to me like you even had difficulties talking to the doctors even in the last few days. Is that correct?
Ileana: 30:40 The last few days they were all happy that my mom is dying. Definitely, because we set up a meeting on the day that she died with the hospital staff and they were all I would say frozen. Um, they could care less, especially the hospital director. I think he was concerned that I would take legal action, which unfortunately they have a way to destroy evidence or hide evidence or they have an explanation for everything. However, from my letter to regardless of whether I can get her an attorney to take the case or not even for free because it’s not a financial thing, it’s a principle thing. It’s a safety thing for the population. Right. I can write about this, right. So, um, and the medication that the opiate receptor was Dilaudid (Hydromorph) said what they had her on all, how can you have somebody that’s trying to breathe where they look for breathing, gain the lung capacity, how can you put them and certain medication because that kills there.
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Patrik: 32:16 The main side, the main side effect of Dilaudid is respiratory depression and it basically inhibits the efforts to breathe. Which again confirms what you, what your suspicion was from day one that your mother was being euthanized.
Ileana: 32:32 Yeah. And, and you know, I wanted to mention another thing when she was transferred on 5/31 to the LTAC and she was in ICU and they took her off the ventilator. They probably took her off of this drip of the Dilauded and my mom went into shock. She was kicking her legs, kicking her arm, trying to take stuff off of her because I think she went through withdrawal.
Patrik: 33:08 Right. That’s another side. If she was on opiates, people do get addicted to it. And if she was on it for a period of time and if they stopped it for whatever reason, she might’ve gone into withdrawal. Absolutely.
Ileana: 33:24 Um, they stopped it when they transported her to the hospital. So they probably stopped it the night before. I’m thinking. So that’s like 12 hours. But I will get the time because they’re going to have to produce all of this information and no matter what. Right.
Patrik: 33:46 And you say, didn’t you say you’ve got access to the medical records already?
Ileana: 33:52 Yes, I do, but not at the LTAC.
Patrik: So you’ve only got ICU at the moment?
Ileana: Yes, at the moment. Correct.
Patrik: 34:03 But you will get, you will get access to the medical records in the LTAC under the freedom of Information Act and as the medical power of attorney. You have every right to access the medical records. So there’s, you know, there shouldn’t be anything you should be worried about if you will request the medical records they need to issue them to you. So you know, they might try and make life difficult for you. We see that all the time. But you know,
Ileana: 34:27 Oh yes, they will, because I asked them, I told them that I want to complete a freedom of information form for the medical records and they were playing dumb that they don’t know what that is even though it’s a hospital. Those are the rights for anybody but people, the population and citizens of this country, they have no clue that they have these rights!
Patrik: 34:54 Right. Absolutely. And it’s not only, you know, obviously you are in the United States, but I talk people all over the world everyday. It’s very similar in other countries too, whether it’s in the United Kingdom or in Australia, New Zealand, Ireland, South Africa, mostly English speaking countries. Unfortunately it seems to be the same everywhere. I do believe that there’s a real epidemic of patients being euthanized to save money, to free up beds, you know, to also almost claim the territory of what’s being considered, “worthwhile to live”, you know, it’s a one size fits all approach. Whatever the medical fraternity considers is worthwhile to live, you know, gets treatment and other patients who are not considered, you know, to live a life worth while they’re pushed into euthanasia.
Ileana: And you know, I can still log in, I just logged into the system, you know, and I can still have access to the ICU at north shore and they do have the Dilaudid on there, this particular opioid.
Patrik: And in the end, do you know, besides the Dilaudid or the Hydromorphine, have they given her anything else to get to keep her “comfortable”? Did you have any Midazolam or Versed? Do you know?
Patrik: 36:24 Um, she did have other things. Yeah, I know she had drips they were starting, which is I’m trying to look here. I just thought it was going to take me a little bit of time to look through all of this.
Patrik: And if I may ask you another question, and you know, I do remember again in the last sort of 48 hours of your mother’s life, I do remember when we were talking, I sort of could see that your mother was probably dying by the information that you shared with me. And I said to her, I said to you, has anybody spoken to you about what’s about to happen? And I do remember you felt like nobody has actually sat down with you and briefed you about that your mother is probably dying. Nobody has asked you, do you need support? Do you need the priest? Do you need certain cultural things met?
Ileana: 37:19 No they didn’t ask me anything! And I asked them, what are these red spots on my mother’s face? Um, and they couldn’t answer. They said we don’t know. How could you not know?
Patrik: Absolutely. It’s quite shocking…
Ileana: It was a sign that she was dying, probably.
Patrik: Right. And, and do you feel like anybody within the hospital whether the doctors or nurses in your, in your mother’s last hours… do you feel like they were showing any compassion towards your mother? At least I do understand they weren’t showing any compassion towards you.
Ileana: So, no, no compassion towards anyone. I did the same to change my field when I was younger from medicine because I was in premed, premed students, nurses, I can’t even tell you how disturbed I am by the fact that they have to work in an environment like this where they’re not compassionate, they just
Ileana: 38:35 to do a job, but they just flipped. They just flipped the id’s, take the blood pressure. For the trachea patients, they are giving a nebulizer, whatever they do, they pull the plug and say something else. They walk away, make a note in the computer. How could that be? That is the highlight of a superficial practice of medicine? Right? Because it was like an automated and if you’re asking them questions, you would be disturbing them. And this was in ICU in Northshore as well as at LTAC. And to tell you the truth, I am shocked at the fact that we as human beings are subject to these people, right? That I don’t believe practice medicine the way it should be practiced. And I’m not saying that it’s everybody, right? Because there are good doctors. You know my cousin, he’s a surgeon, he’s in Europe. he’s very dedicated to his patients and he loves what he does.
Ileana: 40:01 I have not found that with one doctor here, and I’m not exaggerating because I wish I could say something, you know, more positive, but there was one nurse, one nurse that actually called me and she said, you know, she said on your mom. We don’t know if your mom’s gonna make it, you know, by next morning, she was the only one, so she was an older lady.
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Patrik: But there was nobody sitting down with you and talk you through the process?
Ileana: Not at all and when I and when I said something positive to the nurse manager or whatever she was about this particular nurse, she didn’t even care. I looked at their body language, just some horrible people write them out. I have, I feel that I have to write about it because if I want to do my job analyzing and dissecting and architecting the computer system properly, I would get fired. How could this happen in the medical field? How can this get accepted?
Patrik: You’re making a start by publicly sharing your experience, which I’m sure our listeners really appreciate to. Really appreciate it because you know, it’s one of the challenges that I’m finding is nobody is sort of wondering, oh, what if my mom goes into ICU next week, what should I be doing? I’m sure before your mom went into ICU you weren’t thinking, oh, what should I be doing if my mom goes into ICU, you know, it’s not a thought that usually crosses people’s mind. It only hits home when the situation actually happened.
Ileana: Yeah. And I will tell you one thing
Ileana: 41:56 myself and my husband we thought we’d hop on a plane and go somewhere else.
Patrik: 42:03 That’s right. Yeah. They’re are hospitals out there, you know, there is no doubt about the therapist and very good hospitals and there are people around who have integrity where they are doctors or nurses in intensive care. I guess what I’m dealing with on a day by day basis, the people who come to us are the ones who don’t have a good experience and who need help, you know, and we’re almost dealing with life or death situations every day. And what we’re finding is very similar to your situation. And it’s um, it’s the system needs changing. And what I also criticize, it’s like, you know, your, your mother died that day. That is probably what I would consider a “one size fits all”. You know, when, when patients are approaching their end of life in ICU or in LTAC, you know, it’s the same for those patients. They get often euthanized, they get made “comfortable”. Nobody’s asking them, for example, or would you prefer to have your mother at home, would you want your mother to die in her own environment. I’m sure nobody would have had that conversation with you?
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Ileana: No, no, not at all.
Patrik: You know. And, and that is just pure ignorance really.
Ileana: 43:22 Not only that, but they are not allowing me.
Patrik: 43:28 What do you think would’ve happened if you had asked the question?
Ileana: 43:33 If I was asked the question, I would have probably said I want her at home and I want 24/7 care. That’s what I would have gotten. There’s no two ways about it because you have more flexibility in moving the patient. First of all, they were not moving these patients. Yes. The but has sophisticated whatever movement. It’s not the same thing because my mother, I don’t know how many times she tried to get her energy to jump out of bed because my mom was not the type that could sit in bed. Right. So she was trying herself to stay up. No, they just put your head down, you know, so then you could die like that. Basically I think and the TV was off. It was just unbelievable. So then we would come in and we would say, can she be raised, you know, a little bit. Can we turn the TV on? It was just like they were, they were definitely waiting for her to die. And I think the LTAC’s are horrible.
Patrik: 44:48 Right. And that would’ve been an. I do remember asking you that question when you first contacted me. Things like, you know, are they mobilizing your mother, are they stimulating your mother? That sounds like that didn’t happen.
Ileana: 45:02 No, they are not stimulating her at all. I had to bring, um, massage therapist to work with my mom when she was in the room, like even between, um, when she arrived she was in ICU in the LTACT ICU, then they moved her to a room, then they moved her back to ICU in the LTAC. So when she was in the room for the few days I brought, I hired a guy that was massaging her and she was much better and they didn’t like that
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Patrik: 45:39 That should have been a service provided by the hospital. That should have been… that should have been part of the hospital service.
Ileana: 45:49 Of course. I mean if you claim to be an LTAC weaning patients, you better do therapy. That’s what you’re about. You don’t give me an excuse that, oh, but we can’t do therapy to your mom because she’s not ready to be weaned. Well, how is she going to be weaned? And she’s been immobile and fluid build-up. It’s happening and it’s appalling. Appalling. They don’t know what they’re doing.
Patrik: 46:27 So yeah, in hindsight, Ileana, I mean hindsight is, is a great thing. What would be your summary and your recommendation for other families who are in a similar situation?
Ileana: 46:43 So for other families that are in a similar situation, I think that they better get all the specialists in the beginning of the process, especially if they’re engaged with their mother, brother, father, whoever it is, start right. Because there are patients there that did not have family attending. So I’m. So they were at God’s mercy. You know nobody’s Murphy, I think basically so. So I think that they better get all the specialists engaged with and I think that it would be good for them to hire a consultant like you, because you would know how to ask the right questions. Um, and I don’t know how this could be publicized because everybody around the world should know!
Patrik: 47:47 How it’s publicized. I mean, you know, our website is very popular and our service is certainly growing in popularity. You know, that’s one way, you know, you can only change the world one step at the time, you know, we’re doing our fair share and you are doing certainly your fair share. You can get in public with those stories so people can look up for help and they can learn from other people’s experiences, you know, um, you know, yeah. As I said, in order to change the world, you’ve got to start with the first step and we’re certainly doing our part. Um, you know, but it’s difficult, as I said before, nobody’s sitting at home thinking, oh, what should I be doing if mom or dad or my husband or my, my, my wife is going into ICU, you know, that that’s not the, that that’s crossing people’s mind. What can happen going forward? People need to be more proactive around advance care directives. Yes. Right, right. Advance care directives otherwise, but then advanced care directives are also confrontational because people have to face their own mortality, you know, they can be very confrontational.
Ileana: 49:05 I agree.
Patrik: 49:06 So you know that certain things that people can do to eliminate or to minimize the risk when it comes to situations like you, you and your mom have just been through.
Ileana: 49:19 I think that being in and out of the hospital staff and getting in- home care by a professional service such as yours, you always have to have these layers of micromanaging. Right? Which a lot of people assume that, oh, it’s an MD. Oh my doctor. No, it’s not. No, it’s not your doctor. You have to get a second chapter and a third doctor because doctors, it’s not, you know, it’s not an exact field and you really need to have good ethics and you really have to have good troubleshooting skills because not every single human is the same. Not every single human reacts the same. Right to medication therapy and these doctors are really not capable if they’re capable of walking into a room for two seconds and billing the insurance company, it’s $300 for those three seconds. And let’s say they have 20 patients from eight. Can you imagine? I mean how money they’re making per day. Absolutely correct. I mean, to begin with, these are people that are just writing the system and something has to happen.
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Patrik: 50:43 Absolutely. Absolutely. So Ileana we’re coming close to the hour mark. Um, you know, I really, I really appreciate you sharing your and your mother’s story. I really believe that our listeners get a lot of value out of this. Um, you know, if they are in a similar situation to look for options before the LTAC is even a last resort, you know, because that’s what it often is, is sort of a last resort. Patients die and they have much better outcomes in ICU, you know, not just quickly for the listeners in ICU, you have ICU doctors, ICU nurses, respiratory therapists. In LTAC You have nurses that are not ICU trained. Most of the time you have one doctor for 30 patients you have five nursing staff, the 30 patients. So the ratio is just not the same. The skills and the expertise are not the same. So if you are in a position…
Ileana: 51:40 no and not only that, what I found, what they do is they hire consultants, they hire practices from all over, let’s say the Chicago area for example, that pop in, you know, they just pop in so they don’t actually work at the hospital. They pop in on a consulting basis. So that’s appalling.
Patrik: 52:03 So they don’t have regular staff to the level of engagement then is really low.
Ileana: 52:10 very low and the nurses, you know, the nurses that are there, or even the ICU because they claim that they have an ICU, it’s not the same, it’s really not an ICU even though they, um, they can give vasopressors/inotropes bite. Like you said, they’re capable of. They were capable of giving my mom vasopressors/inotropes. It’s like five of them…
Patrik: 52:43 But they didn’t have the monitoring. They didn’t have more monitoring, which is shocking. It’s very unsafe.
Ileana: 52:49 Yes. When I saw them doing it because the doctor came in, they said this, he said out of nowhere one night when I was there and he said, add the first one, add the fifth one and be aggressive, push the button. And I thought to myself, what the hell are they doing? If the other ones that are not working, the blood pressure is not going on in. Her blood pressure was not going up. So the girl, the nurse added a fifth one, she pushed the button and then my mom’s blood pressure went to like 60. Right. So I didn’t understand the system, I don’t understand exactly how they are exactly how are they monitoring these vasopressors/inotropes?
Patrik: 53:26 With an arterial line. An arterial line is a catheter inserted in the artery, either in the wrist, in the groin, sometimes in the elbow, and that’s where you can transfuse the blood pressure consistently and you should never give vasopressors or inotropes without an arterial line in it. It’s unsafe, it’s very unsafe. And if I was a practicing nurse I would refuse to look after a patient with five vasopressors/inotropes without an arterial line because I don’t know really what I’m watching, what I’m, what these vasopressors/inotropes are doing. So that’s another sign to me that the nurses there are not really ICU trained.
Ileana: No. All they do, it’s just and hook this vasopressor/inotropes up to the monitor. Took a picture of and it says, oh, this one can only do 12 and this one can only do five. There’s one can only do nine. I kind of, what the hell are you talking about? Like what are you doing pumping all this stuff together? Unmanaged, right, right. Wouldn’t that damage even more?
Patrik: 54:23 Oh yes, vasopressors/inotropes have significant side effects. They can cause necrosis in the fingers or in the toes, if, if they’re given at high doses, especially norepinephrine, epinephrine, they can cause necrosis in the fingers or in the toes as well as in the skin…
Ileana: So my Mom’s fingers, where she had the palm and her fingers and they didn’t even cut her nails digging into her skin. So what I did is I forced my mom’s arm, I mean not arm, I mean palm to open them so I could put a towel and between they did not even do that.
Patrik: 55:39 That’s really, really disappointing. So, um, yeah, Ileana, look, I think it’s been really an absolute delight that you’ve come on to our podcast and shared this really sad story, but you know, again, I think it’s of extreme value for anybody listening to this interview and they can certainly, you know, learn from this and prevent things happening like they happened to your mom and um, yeah, again, I really appreciate it.
Ileana: If you need to, if you want to, I have some pictures also, we can…
Patrik: Part of when we publish the podcast and we can add on pictures if you like for sure for sure. I really appreciate your time…
Ileana: Thank you!
Patrik: And um, yeah, it’ll be the interview will go out and the next week or so and I’ll be, I’ll be in contact. Thank you for once again, Ileana. Have a good night.
Ileana: Thank you. You do the same. Bye. Bye.
“Thank you very much for being a part of the previous series of 1:1 consulting and advocacy sessions. We hope you will find these new upcoming episodes informative and empowering.
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- How to ask the doctors and the nurses the right questions
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
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- 5 mind blowing tips& strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
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- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
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- How you need to manage doctors and nurses in Intensive Care (it’s not what you think)
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