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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 my clients and the question in the last episode was

My Dad Had A Poor Prognosis And Was Dying In ICU? Why Was The ICU Team So Disrespectful?

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 in ICU is part of a medical research study, but I didn’t give consent to it!

“You can also check out previous 1:1 consulting and advocacy sessions with me and here.”

PART 1

PART 2

PART 3

Natasha:  Hello.

Patrik:  Hi, Natasha. It’s Patrik here. How are you?

Natasha: I’m okay. Can you hear me?

Patrik:  Yeah. Speak up a bit more if you can.

Natasha:  Okay. Can you hear me now?

Patrik:  Yeah. Much better, much better.

Natasha:   Okay. I don’t know why, I don’t know where the microphone is. Okay. But it’s okay right now when I speak like this?

Patrik:   No, no. It’s fine. It’s fine.

Natasha:  Okay. How are you? I hope everything’s okay with you. I’ve been listening to a lot of podcasts or videos.

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Patrik:   Right. Right, that’s good.

Natasha:  Yeah.

Patrik:  And …..

Natasha: A lot of good information.

Patrik: And thank you. And how have you been and your family? Are you coping with everything that’s been happening?

Natasha:  Not really. I’m just trying to get my mum, or we just started doing the surrogate paperwork.

Patrik:  Mm-hmm (affirmative)

Natasha:  With the court, for my mum to be the head of the, someone to take over my dad’s estate.

Patrik:  Yeah.

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Natasha:  Even to get the medical paperwork.

Patrik:  Yeah.

Natasha:  I’m gonna call the hospital tomorrow to see if the medical records are ready.

Patrik:  Mm-hmm (affirmative)

Natasha: They said that it should take a couple of days more, so I hope it’s ready tomorrow. Oh, they said it’s about 1100 pages. The record’s person, she said it’s about 1,100 pages and that I could have it on a CD. So….

Patrik:  That’s good. So what they’re saying is, is that 1,100 pages just for this last admission?

Natasha:  Yeah for the 7, whatever 7 days. You know about 8 days, 8-9 days.

Patrik:  Wow.

That’s a lot. I mean hmm. Okay. Well I mean I know that medical records can be extensive, you know. But for 7 days, 1,100 pages seems to be a lot. But if that’s what it is, that’s what it is.

Natasha:  But it could be because I asked for everything, remember. So I even asked for ….

Patrik:  Oh yeah.

Natasha:  His hand written notes, so maybe some of those pages are one line or something. You don’t know.

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Patrik:   Mm-hmm (affirmative)

Natasha:  You hear what I’m saying?

Patrik:  Oh yeah, sure. Sure it doesn’t say whether every page will be filled with documentation.

Natasha:  Yeah.

Patrik:  Yeah, yeah I get that.

Natasha:  Yeah.

Patrik:  Mm-hmm (affirmative)

Natasha:   Yeah it could be just one line or something. Okay so, let’s jump right in.  I want to ask you, so there’s one thing that I didn’t tell you about and I was thinking about this. And I didn’t think much of it when they asked me. So my dad does have COPD…

Patrik:    Mm-hmm (affirmative)

Natasha:  And they had asked me the second day that he was there, or the first day he was there after he was intubated, oh your dad has COPD. He is a candidate for being a part of research or something…

Patrik:   Hahaha.

Natasha:  Would you like to be a part of it? And I say okay sure.

Patrik:  Yeah.

Natasha:   Okay what’s the big deal?

Patrik:   Yes. Yes.

Natasha:  I had agreed to that Patrik.

Patrik:   Yeah until you’ve seen the ….

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Natasha:   And they asked so nonchalantly. It was very nonchalant. It was oh yeah whatever.

Patrik:  Yeah.

Natasha:   And I was like they’re not gonna harm him like that.

Patrik:   Until you’ve seen my blog post probably?

Natasha:   I only put out 1 video. Okay when they do research, they are not going to do anything that would recall treatment or harm him.

Patrik:   Mm-hmm (affirmative)

Natasha:  They asked so nonchalantly, would you like to be a part of the research of it. Oh yeah sure. Yeah, okay.

Patrik:  Yeah. So do you remember what it was all about? The research?

Natasha:  No, they just asked me and I said oh okay. I did not even ask because I didn’t think it was going to be …

Patrik:  Major.

Natasha:  I thought they were just going to monitor him.

Patrik:  Mm-hmm (affirmative)

Natasha:  And that’s it.

Patrik:  Okay.

Natasha:   I didn’t even inquire.

Patrik:  Yeah, yeah. Well, and did you sign a document for that?

Natasha:  No, I didn’t. They just put something in the computer ….

Patrik:   So it was basically verbal consent you gave?

Natasha:  Yeah.

Patrik:   Okay. Right. Once you have all the medical records, you should be able to see what you’ve consented for. Normally what happens if they do consent families for medical research studies, verbal consent might be fine but they should still give you, let’s just say a leaflet or some information about the medical research. I would imagine, by them asking you, you’re consenting your dad to be part of this medical research study, it sounds to me like they haven’t shared with you openly and transparently, what it’s all about?

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Natasha:   No, and honestly I didn’t think that it was, I just thought they would just be whatever …

Patrik:   Mm-hmm (affirmative). Look, look

I would imagine, but not knowing, but from experience, if they ask you for a study for COPD, it’ll probably come back to something like for COPD patients in intensive care, they have sort of standard treatment: diff nebulizers, ventilate in a certain mode, that sort of thing. A study might mean that they might be trialling a new drug or they might be withholding one of their standard drugs. They might have trialled a different ventilation mode. That’s what it’ll probably come down to. I’m very critical of medical research. Very critical. I’ve only written one blog post about it but I have probably five more blog posts tied that’s in my head that I just haven’t written yet. I’m highly critical of medical research. I think it’s a money driver for ICUs-

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Natasha:   Yeah.

Patrik:   And I believe it’s highly ethically questionable.

Natasha:   Yeah.

Patrik:   Highly, and I have told … when I was at the bedside, I have, you know, families have come to me occasionally that said, “Hey, they’ve asked us for this medical research study”, and I said to them, “Don’t you dare. Don’t you even think about this”, and I told them why.

Natasha:   Yeah.

Patrik:   I think them highly, highly questionable medical studies.

Natasha:   Like what? Like for example-

Patrik:   Yup. Yup, I give you two examples in particular. One is, one day they were running a trial in the ICU about a patient who is spontaneously breathing and close to coming off the ventilator, restarting some propofol which in essence, would have delayed or has delayed coming off the ventilator. That opens a can of worms.

Natasha:  Oh my God.

Patrik:  Yes. Yes. I have been highly critical of that, and I have told people so. I have advised families. I remember there was one family. They came to me. They said, “Hey, they’ve asked us for this study. Does that mean my brother or my father or whoever it was might not come off the ventilator today?” And I said to them, “Yes, that’s exactly what it could mean. That’s-

Natasha:  Oh my God, Patrik.

Patrik:  Oh, it’s-

Natasha:  You know what happened … That now … Can I tell you something? Because now what I was thinking is … So what was happening, I remember there was a group of student-type nurses. I mean, they were older though. It’s like, they were there but they were coming from a different unit and I remember the respiratory therapist. She came into my dad’s room nonchalantly. She’s like, “Oh, can I show this nurse how to just tell her about your dad’s ventilator and show her how to suction your dad.” She was an older nurse in the hospital. There was a group of them, so she showed the nurse. She did it once to my dad, the suctioning. Right? Nothing came out of my dad, right? None of that slimy stuff that, you know, secretions.

Patrik:  Yeah.

Natasha:   Being that my dad’s oxygen is questionable … his oxygen went down a little bit to the high 80s, like his saturation. That’s happened before because air comes out, right?

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Patrik:   Mm-hmm (affirmative)-

Natasha:  Nothing. No secretions come out. I just felt like, okay, since nothing … there was no secretions, in my mind I’m thinking, the nurse should not practice taking anything out because nothing came out, right?

Patrik:   Yup. Exactly. Exactly.

Natasha:  But then, in my mind I was just, “Okay, they shouldn’t be doing that.” Then the nurse tried it. She’s like, “Oh, now you go do it,” and the nurse did it anyway and now my dad’s oxygen levels started dropping some more and he had an episode. I was like, “Why did you do that? Oh my God. You should know as a respiratory therapist not to let her do that.” Then the respiratory therapist is like, “Oh no, no, no, no, no. He’s okay now. It’s not because we did that. I was like, “No. You’re draining more oxygen out of him because you did it twice and there was no secretions and you should have the knowledge to not … the expertise not to do that to him twice!” She said, “Oh no, that’s not why it happened. I put the oxygen, the FIO2 to 100 and blah, blah, blah. He was just having an episode.” I know, but he’s fragile and you shouldn’t have done that.

Patrik:  Look, that could have been part of the medical study, but it could have also been just a teaching student. Either way, you don’t want to torture.

Natasha:  Yeah.

Patrik:  You don’t want to do something that’s not necessary, you know. There would have been other patients in that unit that they could have practiced.

Natasha:  Yeah, that was really … because that does suck out the oxygen, right? Like you can-

Patrik:   Yeah, but you know, it sucks out the oxygen but if there are secretions, it’s more important to get rid of the secretions so that the oxygen-

Natasha:  I know, but the-

Patrik:  … can actually do its job.

Natasha:  Well no, I know that. I know of course if there’s secretions, but there was actually nothing and she did it twice when there was nothing.

Patrik:    You know, in order to find out whether you should suction or not, either a nurse, a doctor or a respiratory physician should take a stethoscope, should have a listen to the chest and then make a decision to suction or not, because you can often hear that when you’re listening to the chest with a stethoscope. That’s one indicator. The other indicator would be to look at the numbers on the ventilator. For an experienced person, that would give you another indication.

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Natasha:    Yeah, because that’s traumatizing to do it.

Patrik:   Oh it’s very traumatizing.

Natasha:  She did it twice for no reason at all! That’s unacceptable.

Patrik:   It’s not necessarily … It could have been a research study but it could have just been teaching-

Natasha:   Yeah.

Patrik:    … a junior or a stu … It could have been either or, but with the research, I would certainly try and find out if I was you-

Natasha:    with what?

Patrik:  … to ascertain what you signed up for. I think that would be very important for you to know.

Natasha:   Yeah, and I’m waiting for that. That concerns me because when I saw that video of yours, because I was scrolling and you wrote me on Patrik Hutzel of Intensive Care Hotline and I was like, “Oh my God, why is he saying this, and I put in my mind, oh my God, they just asked me so casually.”

Patrik:  Yeah, yeah, yeah. Yup, yup. That’s often their strategy because the reality is, there’s millions of dollars of funding going into ICUs every year for medical research, and they don’t want to make a big deal about it, but it is a big deal because it’s a lot of money. It’s keeping people in jobs that I believe are needed for frontline services, right? And number four, what does it do to patients? What impact … All those millions of dollars of research funding, again I believe can be used for frontline services. The research to me is not a frontline service. I do believe that research has its time and its place. I do believe that, but what I’ve seen over the years, studies that have been performed on patients in ICU that I believe are not in the best interest of the patient, and that’s-

Natasha:   That’s the nature of it.

Patrik:  Well, I can give you two other examples if you want to.

Natasha:  Yeah. Got time?

Patrik:   Yup. Another example is … So I’ve seen that one study that was done not too long ago, actually a couple of years ago. Patients in ICU are mostly fed via the nasogastric tube. Have you seen that?

Natasha:  Yes. Yeah, my dad had it the first time.

Patrik:   So what they found with long-term patients, and your dad wasn’t a long-term patient but just to put this in perspective, a lot of patients in ICU, they go for transfers for CT scans, radiology, whatnot. Most of the time, what happens when patients go for a transfer, feeds get stopped, okay? Because there’s aspiration risk. It’s just when you go for a transport, you want to minimize everything that you’re taking with you, right?

Natasha:    Of course. Yeah, yeah.

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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.

How can you become the best advocate for your critically ill loved one, make informed decisions, get peace of mind, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?

You get to that all important feeling of making informed decisions, get PEACE OF MIND, CONTROL, POWER AND INFLUENCE when you download your FREE “INSTANT IMPACT” report NOW by entering your email below!

In Your FREE “INSTANT IMPACT” report you’ll learn quickly how to make informed decisions, get PEACE OF MIND, real power and real control and how you can influence decision making fast, whilst your loved one is critically ill in Intensive Care! Your FREE “INSTANT IMPACT” Report gives you in-depth insight that you must know whilst your loved one is critically ill or is even dying in Intensive Care!

Sign up and download your FREE “INSTANT IMPACT” REPORT now by entering your email below! In your FREE “INSTANT IMPACT” REPORT you’ll learn how to speak the “secret” Intensive Care language so that the doctors and the nurses know straight away that you are an insider and that you know and understand what’s really happening in Intensive Care! In your FREE report you’ll also discover

• 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

• How to eliminate fear, frustration, stress, struggle and vulnerability even if your loved one is dying

• 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

• You’ll get real world examples that you can easily adapt to your and your critically ill loved one’s situation

• How to stop being intimidated by the Intensive Care team and how you will be seen as equals

• You’ll get crucial ‘behind the scenes’ insight so that you know and understand what is really happening in Intensive Care

• How you need to manage doctors and nurses in Intensive Care (it’s not what you think)

Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!

Make sure you also check out our “blog” section for more tips and strategies or send me an email to [email protected] with your questions!

Also, have a look at our membership site INTENSIVECARESUPPORT.ORG for families of critically ill Patients in Intensive Care here.

Or you can call us! Find phone numbers on our contact tab.

Also check out our Ebook section where you get more Ebooks, Videos and Audio recordings and where you can also get 1:1 counselling/consulting with me via Skype, over the phone or via email by clicking on the products tab!

This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!

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