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 one of my clients and the question in the last episode was
My Dad In ICU Is Part Of A Medical Research Study, But I Didn’t Give Consent To It!
You can check out
last week’s question by clicking on the link here.
In this week’s
episode of “YOUR QUESTIONS ANSWERED“, I want to answer the next questions from one my clients Natasha who has her Dad in the ICU who became a part of the medical research study and doing trials for him without giving enough medical information
related to the study.
My Dad Is Part of Medical Research in ICU, can it cause harm in life threatening situations?
You can also check out previous 1:1 consulting and advocacy sessions with me and Natasha
here.
PART 1
PART 2
PART 3
PART 4
Patrik: Anyway, so there was a study done that when patients
go for a transport, NG feeds get stopped and they get started on TPN. Do you know what TPN is?
Natasha: What’s TPN?
Patrik: Yup. TPN is IV nutrition. Intravenous nutrition. Now that study might have merit in and of itself in terms of looking at outcomes because you do want to definitely keep feeding patients in ICU almost 24 hours a day for a number of reasons. I’m not going into detail now. You want to keep patients feeding
24 hours a day if you can. So the study itself might have merit to continue intravenous feeding when patients go for a transport because you have no aspiration risk but you still keep feeding them. But here is my point. NG feeding is relatively inexpensive, maybe let’s just say, maybe fifty to a hundred bucks a day, okay?
Relatively inexpensive. Now, our intravenous nutrition is very expensive. We’re talking about 500 plus dollars a day. Five hundred to a thousand dollars a day.
Natasha: Imagine.
Patrik: So when a patient goes for a transport, they start the intravenous nutrition for let’s just say, for three hours, and then when the patient is back in ICU, they restart the NG feeds. They’re basically throwing out a thousand dollars for three hours. Right?
Natasha:
Okay, yeah. Yeah. Throwing out.
Patrik: I have seen patients who would have needed TPN, not been getting it because with the argument it’s too expensive.
Natasha: Wow. Wow.
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Patrik: Right, there’s highly, highly questionable stuff going on. Highly, highly questionable. Another study … And you know those studies have to be approved? From an ethic committee. That really … that I believe is really dangerous. There’s an ethic committee signing off on that stuff.
Natasha:
Wow. In order to do that.
Patrik: That I believe is … those people from my perspective, have no ethics whatsoever.
Natasha: That’s really wrong, because they want a-
Patrik: That’s very wrong. I had a discussion with one intensive care consultant a few years
back, and I was questioning him on things that he was doing and he said, “Oh he’s got this Masters in Ethics, I said, “You, you have no ethics whatsoever, no matter what degree you have on paper.”
Natasha: That’s really bad. Oh my God.
Patrik: It’s very bad. It’s very bad. I’ll give you another example so that you really get what’s going on
there.
Natasha: Yeah.
Patrik: Another study that I’ve seen was some patients in ICU are getting paralyzed. Have you heard of that? Paralyzing-
Natasha: Yeah. I’ve heard of that. Yeah.
Patrik: That is a last resort. Paralyzing a patient is a last resort, okay? It’s either done for procedures like, let’s just say, a patient have a tracheostomy or a patient have a bronchoscopy. That’s sort of short-term, for maybe for half an hour to an hour short-term, okay?
Natasha: Yeah. To keep them still. Yeah.
Patrik:
That’s right. One study that I’ve seen is … you know, some patients that can’t be ventilated for whatever reason … if they can’t be ventilated even though they are in an induced coma, they need to be
paralyzed. You can actually ventilate them. It’s life saving, but at the same time, this should be again, this should be minimized. This should be minimized to the absolute minimum hours, maybe a couple of days sometimes but that’s about it. Then you’ve got to find other avenues to continue ventilating a patient. I’ve seen a study, again probably a couple of years back, where they kept patients, and I couldn’t tell you the details now but the gist of the research was basically, they kept the
patients paralyzed for longer to look at long-term outcomes.
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Natasha: Oh my God.
Patrik: Yes. Where I remember … I looked after a patient that was sort of four or five days in full paralyzing mode, and I said to the doctor, I remember when they were coming around for the ward round, I said “I do believe it’s time to get this patient off these paralyzing agents.” And they said, “No, no. It’s not quite-”
I said, “Look, it’s five days. You and I know that very, very, very
rarely do you keep a patient paralyzed for five days.”
Natasha: Wow.
Patrik: I said, “I believe the reason you keep him paralyzed is because he’s on this study.” They looked at me. “No, no, no.” I said to them you’re doing this in the name of medical research without looking at what’s best for the patient. Again, that study
might have merit but you don’t do this on live patients. You just don’t.
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Natasha: Precisely. Now when you tell me these things, I’m starting to think, did they … I mean, when I started doing what my dad for example, the COPD, it was right when he was
admitted with the ventilator that second day. He didn’t have all that cloudiness which … the Pseudomonas which came …after we had … I’m still assuming that was a ventilator-associated pneumonia based upon my conversations with you, based upon what I’ve read online, and based upon the chain of events, the Pseudomonas did come. It was from the ventilator-associated pneumonia why he had all that cloudiness-
Patrik: Mm-hmm
(affirmative)-
Natasha: … in his left lung, and that’s why he couldn’t breathe in the end. That happened about five days after. It could have been that did it to the bronchoscopy because they were on the trial,
because he didn’t need the bronchoscopy early on. He needed it after he got all cloudy, after April 6.
Patrik: Yeah.
Natasha: That could not have been a part of the COPD study perhaps.
Patrik: Look, I couldn’t … What’s the name of the hospital that your dad
was at?
Natasha: He was at Alexandra Hospital in Pittsburgh.
Patrik: Okay, so what I’m doing now … Alexandra Hospital. What’s-
Natasha: Pittsburgh, Pennsylvania.
Patrik: Yeah, because what
I’m doing … I’m just typing in “Alexandra Hospital, Pittsburgh Intensive Care”
Natasha: He was in the CCU. They put him in the CCU.
Patrik: Oh, CCU. Critical Care Unit. Let’s just see what comes up because what sometimes happens is, some ICUs publish their studies on their website.
However, when I google-
Natasha: They don’t post anything.
Patrik: No, there’s nothing. There’s nothing.
Natasha: There’s nothing. Absolutely nothing on their website.
Patrik: There’s nothing. Yeah, no there’s nothing.
Natasha: What I’m saying is that, he’s going to develop all that … because he was on the CPAP setting in the beginning. He was actually kind of okay and then it wasn’t until the fifth or sixth day. April 6th is when he … the two days before he died is when they saw all that shit in his lungs. It was just so
horrible.
Patrik: Look, it will be hard for me to speculate what study they were doing, so I think you got to find out through but I do believe it’s either going to be about a new drug being trialled or a drug, a standard drug being withheld and maybe being replaced by something else, or it’s in relation to trialling a different ventilation mode. That’s what I think it might be.
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Natasha: The ventilation modes.
Patrik: Yeah. I would think. Or vent-
Natasha: Yeah. They might … You go ahead.
Patrik: Or ventilation settings. Either or.
Natasha: If they’re doing some funky stuff, I don’t know with the vent … I don’t know, the ventilation. Well I guess it’s because … the COPD, they were just saying how it’s okay if you’re in the high 80s. But he’s saturating in the high 80s because he has COPD and … That makes sense though. I’ve heard that as well.
It’s just that when he was first in the ICU, they always made sure that he’s saturated in the mid to high 90s the first time around. But these people were like, “Oh it’s okay if he saturates in the high 80s.” I don’t know.
Patrik: Well, look, I don’t think it is but it also depends on what the baseline was.
Do you
know what your dad’s baseline saturation was in the nursing home?
Natasha: Oh. Oh, my dad was satting at 98, 99, a hundred. Yeah.
Patrik: Okay, okay. Yeah, yeah. Okay well then you know the baseline and then you also know that high 80s probably wasn’t what he needed.
Natasha: Yup. I was complaining about that. Yeah, and then they start bumping up the FIO2 … they started bumping it up, but okay.
All right, thanks for letting me know about that, yeah, because I was looking that up too on the internet and I didn’t know they actually really did that. Like they could … An example-
Patrik: It’s a money driver. It’s a money driver but mostly, you know what it is? Not that it really matters. Well, I think it does. You know what it is? It’s a money driver. What’s coming out of this in the end is mainly doctors, but sometimes nurses as well … they can have their name on a medical research study paper, right? What that does for them is, well number one, it might give them credibility in their profession’s eyes, with other
professionals maybe. But what it does really is it gets the pharmaceutical companies to look and they’re often the ones funding it. There’s often hidden perks for doctors and for nurses if they can publish research.
Natasha: Yeah.
Patrik: So there’s … It’s a multimillion, probably a multi billion dollar industry in the medical
research.
Natasha: Yeah but not … I can understand if it’s not really just kind of life-threatening type of situation. The stuff you kind of described to me was, it can harm patients. Really harm them.
Patrik: Totally. Totally.
Natasha: I can understand a
lighter form and maybe they’re not telling patients that it’s … They still should but these examples you just told me are very inappropriate.
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Patrik: Very inappropriate. I can see that if this study shows a positive outcome, I can see that it might have merit but then
they need to find another way of finding and I’m not saying they should use animals or … I don’t know what the answer is but I do know the answer is not trialing this on real live humans.
Natasha: No.
Patrik: That probably in one of the most difficult situations in their entire lifetime.
Natasha: Yeah. Let’s do that. Yeah, all right. That was really very educational.
Thanks for letting me know about that.
Patrik: You’re welcome. You’re welcome.
Natasha: You’re really good at that. That’s really, oh my God. That’s bad. Oh. I
didn’t think it was that bad.
Patrik: What’s your background? What do you do for a living? Are you a scientist? What’s your background, if I may ask?
Natasha: Oh no. Okay, so out of high school, I actually did start studying nursing.
Patrik:
Right.
Natasha: I dropped out the first year. I’m in my thirties. The first year, I actually did drop out. I didn’t like the hands-on clinical aspect. I have a lot of friends and family members in the medical profession. Not a lot. My sister’s a doctor and I have other friends and stuff. I just kind of always interested in it and then when my dad got sick, I was interested in it. Then I went back to school and I
studied Political Science. I’m a homemaker. I mean, so-
Patrik: Your background is, you’ve studied some Science as well, so you are interested in the ins and outs.
Natasha: Yeah. I did all the science classes. I did all of that. I understand a lot of the terminology.
Patrik: Yeah. There’s a lot of … I call a spade a spade, if I have to. There’s a lot going on in the medical industry. A lot.
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Natasha: Yeah but I didn’t think, especially with this. With the ICU. That’s …
yeah. Just the way they asked, it was just very casual so I just thought it was something just kind of like monitoring him and I didn’t think it was like anything. I thought it
was-
Patrik: That may well be the case. Maybe it was something about monitoring. We’ve got to find out. I don’t know, but most of the time, especially if they’re asking nonchalantly, you better find out what this … what you signed up for.
Natasha: Yeah, but you know when they ask it in that tone, I just don’t think … I don’t think it
would be something serious. That’s why I just assumed that they’re just, okay, they’re going to be monitoring. They’re going to write down his name, his age, his stats, and then he’ll put it into some kind of research study form. This patient came in blah, blah, blah like this. These were his … for the past seven days when he was admitted, he was like this. His ventilator settings and then he … this happened on this day, and then blah, blah, blah.
Yeah, okay. I know. We’ll see. We’ll see once I get it and then … Okay, all right.
I’m going to get going because I’m going to get the phone call soon. I have a interview. They were supposed to call me and then … They did call me back but … they called me early and I’m like, “I’m going to call you back again, and then go through.”
Patrik:
Okay. Look, keep an eye when we … probably talk again Monday night…
Natasha: Hopefully I’ll have it.
Patrik: Okay, and good luck for the interview.
Natasha: Yeah. Just get some stuff and then hopefully I’ll have this batch-
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Patrik: Sure. Sure.
Natasha: .. and then I can send them to you and see what you … what we can do.
Patrik: Yeah. Yeah. Okay. Have a good night.
Natasha: All right. Talk to you soon. Thank you so much. You too.
Patrik: Take care. All the best. Bye-bye.
Natasha: All right. Bye-bye.
Kind Regards
Patrik
