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 episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Megan, as part of my 1:1 consulting and advocacy service! Megan’s brother is making progress in ICU and she is asking if it’s okay for her brother to be a part of a research study.
Is it Okay for My Brother in ICU To Be a Part of a Research Study?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Megan here.”
Patrik: Right, yeah.
Megan: And they are in there. I saw them come in. It was very sad, but that’s probably not the norm, is it? This child must’ve been on chemotherapy, I imagine, by the look.
Patrik: Could be. Could be.
Megan: She’s got the look. No hair and…
Patrik: Right. Right.
Megan: But, yes, it seems the majority, Patrik. I mean, I don’t know anything about it, but talking to the relatives and so on, most of it seems to be pneumonia, heart problems, and who knows if there’s underlying cancer, but as you say, it’s not something that’s a big thing in there.
Patrik: No, probably wouldn’t be the big thing.
Megan: No. No, but you feel that they are wrong to make it into such a big thing?
Patrik: Yes. Yes, especially since you haven’t spoken to the oncologist, because you almost only hear it second hand, because, again, the ICUs are not the specialist on any cancer treatment. That’s not their specialty. I would try and get that oncologist report, and then once you’ve got that, then you can, as the next the step… If there is no oncology report, well, ask to talk to the oncologist. You have every right to do that.
Megan: Yes. Yes. As I say, when I raised it before I was told it’s not available.
Patrik: Again, I think I mentioned that before, the way I look at this and “no” means not yet. Persistence is key, and I know you are persistent. I have no doubt about that, so just because they’re trying to fob you off, just means-
Megan: Keep asking.
Patrik: Yeah, keep asking. That’s all it is.
Megan: Keep asking.
Patrik: The good news is you are not in an absolute desperate situation. I have people sometimes call up, they tell me, “Oh, tomorrow, at one o’clock, they’re going to take off the ventilator.” You are in a much better position. You are laying the ground. You’re using the dynamics for your own good, so you’re in a much better position than most other people to navigate the territory.
Megan: Yes. Yes, we haven’t got to some critical point. We’ve been at some fairly hairy points, but we haven’t got to the critical point where they say, “We feel the end of life is here.”
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Megan: Oh, well. That doctor told me, but he didn’t say, “It’s now.” Did he? He just said, “He won’t make it.” But he didn’t say, “We’re switching the machine off now.”
Patrik: Correct. Correct, and he can’t do that without going through a process.
Megan: Right. Okay, and since Ryan’s making progress, now, I assume there would be no process in place yet?
Patrik: Well, this is exactly the point. He’s making progress, that’s exactly the point.
Megan: Yes, and it’s extraordinary that it was the doctor who told me he won’t make it, who got this whole ball rolling. It’s very strange. Yeah, it’s very strange.
Patrik: Yep. Well, it is and it isn’t. For me, I know this world inside out, but… It is very strange, and you really have to understand. There are so many other dynamics, in terms of, you asked earlier why would they want for Ryan. I’ll give you another example, and it’s happening in there even though you haven’t picked up on it, and I’ve seen it so often, and it’s always been a point of contention for me over the years…
Patrik: Or, not over the years. The longer I worked in this environment, what I picked up on was really, in ICUs, there’s a lot of research going on. Okay? A lot of research and a lot of money is coming into ICU through research studies, and if a patient is not in any research study or they can’t enroll them, they’re not of interest. They’re not of interest, and I have seen research studies, again, where I refused to carry them out because I just said, “You’re nuts here. You’re absolutely nuts.”
Patrik: If I was a patient, I would not want to be in this research study.
Megan: Do you think Ryan is in a study?
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Patrik: No, probably not. Probably not, but number one, if he was, you would have to give consent. You would have to sign a paper. There is no doubt about that. However, many families do that, because ICUs “sell” it to them.
Megan: Yes, “Your relative is in a critical condition. This could be the thing that saves them.”
Patrik: Correct. Correct. Without understanding that it could also go-
Megan: The implications.
Patrik: The implications, and without understanding what is the standard therapy for those patients. How does it deviate from standard therapy? All of that.
Megan: Yes, I did ask right at the beginning about this. I said, “Do you have a research project?” I asked them the question, and they said, “No.” And I said, “Is my brother earmarked for one?” And they said, “No.” It’s what they said. Maybe he’s just not interesting enough.
Patrik: He might not be interesting enough, and they may not have a study going at the moment, but the big ICUs have-
Megan: Do have.
Patrik: Research studies. There are millions of dollars or millions of pounds coming into ICUs every year just for studies.
Megan: Just for that?
Megan: So, really it’s almost, Patrik, taking advantage of somebody at their most vulnerable ever in their life.
Patrik: Yeah. Yes. By the same token, there are definitely some studies that have their time and their place, but there are definitely some studies that certainly are highly, highly questionable, and some studies are driven by the big pharmaceutical companies. I know too much to not criticize it.
Patrik: At the same time, there are certainly some studies that have their time and their place, but there’s too much crap going on because there’s so much money involved.
Megan: Yes. It seems to me, Patrik, that medicine has taken a slightly wrong turn, and that the pharmaceutical companies with their huge dollar spend are able to really dictate now, even at the training stage.
Patrik: Very much so. Very much so, and also the seniority of doctors, and I have no evidence for that, but 10 years ago, I was working with this doctor, and he was trying to push this new drug and I was joking with him at the time. I said, “You’ve got some shares in this company, don’t you?” I was joking with him at the time, but I think in retrospect, maybe it wasn’t so much of a joke.
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Megan: Maybe it wasn’t, and maybe it wasn’t exactly shared with something else, Patrik
Patrik: You know what I mean? I mean, it doesn’t matter.
Megan: I know exactly what you mean. I know exactly what you mean.
Patrik: Some incentives.
Megan: Incentives, big incentives. I was reading something on the internet where it said that all the drug companies have big budgets, and these budgets are specially allocated for incentives for doctors.
Patrik: No doubt about it. I mean, you can do the maths. You can do the maths. There are 13 beds in there, if there are patients in there, you can do the maths, how much money is going through that unit every year. Even if they’re not full every day, they wouldn’t be full every day, but you can see how much money could go through this unit if they were full every day.
Megan: Yes. Yes, indeed. I mean, this is big bucks.
Patrik: This is big bucks. The unit that I still do assist in, I’ve done the math. It’s massive.
Megan: It’s massive money, and these drug companies are so powerful, aren’t they?
Patrik: Look, it’s hard to say. I’m not the insider on how powerful they are, but if you look at antibiotic therapy, all of that, it makes you wonder. At the first sign of an infection, in ICU, they get loaded with antibiotics, where I wonder, “Well, is this really the right way to go?”
Megan: It seems, Patrik, that the prevalence of these chemical… Well, for want of a better word, chemicals that they push on everyone from this, to that, to the other, to the other, to the other. It’s all about money. Creating customers rather than curing anything.
Patrik: It is. On the one hand, there’s certainly a massive industry behind that. On the other hand, if you look at… I mean, you would know. Statistics, people do live longer.
Patrik: So, some of the things that are happening in medicine are definitely working.
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Megan: Are good, yes, and sound.
Patrik: Right, and are sound, and certainly intensive care certainly contributed to people living longer. There’s no doubt about that, but it is going in a direction that I don’t like, and it’s hard to… As I said, even though I’m an insider, I believe in the industry. What I don’t know is, how much influence do the drug companies really have? I’m not the insider there.
Megan: No, no. It looks to me as if they are now funding the actual training of the doctors. There’s a lot of funding going on in there, which is very worrying if it’s true because it’s like saying, “When your patients come to see you if they don’t leave with a prescription you’re not doing your job properly.” This prescription thing has become a bit of a money-spinner.
Patrik: Yes. Yeah. I mean, as I said, intensive care-
Megan: Is different. It’s different.
Patrik: It’s different, and there’s certainly a lot of good things happening in ICU, and most patients go in and go out, and that’s all good, but the tricky bit comes really when it comes to long term and when it comes to the end of life. That’s when the tricky bit starts. If you go in after surgery and you stay there for 24 hours, just for observation, that’s all good. Nothing wrong with that.
Megan: No, and then you go to the ward, that’s wonderful.
Patrik: That’s right. That’s not anything, but when it comes to the longer it goes on, the more political it gets.
Megan: Yes. I think, Patrik, we are entering that period. We have entered that period.
Patrik: Oh, yeah. There’s politics. There’s politics, no doubt about that. No doubt about that. There’s politics, and there’s also, on a bigger picture level, again, with an aging population, especially in first world countries, I think beds are in massive demand. ICU staff is in massive demand.
Megan: Demand, yes.
Patrik: So, it’s a battle for resources, and again, I keep coming back to Alfie Evans and to Charlie Gard. They could have potentially stayed in ICU for the next two years, not knowing what was going to happen, and it’s all about… Okay. Well, they’ve done the maths. If Charlie Gard was to stay in ICU for another two years or if he was to go to America, or like Alfie, to Italy, and they would come back-
Patrik: So, how would that make them look like, and what would that trigger for other babies in similar… It’s all about, how do we manage what they think are limited resources. It’s all about that.
Megan: Patrik, do you think they were… I mean, because obviously there was the hospital who was waiting for him, and they wouldn’t let him go. I mean, that, to me, seemed to be astounding. They literally imprisoned him-
Patrik: Very much so.
Megan: … in their hospital, and they said, “We own this baby, not you. We are going to make the decisions here.” Were they afraid that the Italians would show them up and hold on to him for as long as was necessary?
Patrik: I think that was part of the problem. I think it was all about setting a precedent. Well, probably the second precedent, because the first precedent was with Charlie Gard. They were trying to get him to America. They’ve raised all the money. The money was there. The courts put a spanner in the works, so Alfie Evans and Charlie Gard had a lot of similarities..
Patrik: It was all about not letting them go to where they could potentially experiment, whereas with Charlie Gard, it would have been experimental, but with Alfie, it was clear. The Italians said, “He is going to die.” There was no question around that.
Megan: No question.
Patrik: Right, there was no question around that, but it would have been on their terms. It would’ve been on their terms, and what we did from our end, and the family… In all fairness, I should say, it wasn’t the family who approached us in the first place. It was actually the church that approached us.
Megan: The church.
Patrik: What they did ask for, because I’m running a service here. We’re providing intensive care at home. We’re basically sending ICU nurses in the home. They asked us at the time, they said, “Hey, we’re giving you the medical records. Can you write a proposal for intensive care at home for Alfie?”
Patrik: So, we did that and they presented it to the judge, and the judge refused it, of course. Even though I had an email from the judge secretary asking me, “Oh, could you come onto a Skype call on such and such.”
Patrik: Last minute, they turned around. Right, because, for them, it would have opened a can of worms. If Alfie can go home with ICU nurses, well, there would be other babies.
Patrik: So, for them, it was all about opening up a can of worms, and besides that, we are a nursing service. We are not a medical service, we’re purely a nursing service. So, our evidence is purely on a nursing level, so they wouldn’t accept that even though our referrals come from hospitals, of course, but they wouldn’t accept the evidence.
Patrik: Number one, we’re overseas, right? And number two, it’s coming on a nursing level, but it was purely about ideology. I mean, the family accepted that Alfie was dying. That wasn’t their point, but I mean, you would have seen in the media what horrible time they had at the hospital. I mean, of course, they wanted to leave.
Megan: Oh, Patrik.
Patrik: Of course they wanted to leave.
Megan: Terrible. Terrible. Police everywhere, and the interesting thing was how it really, really galvanized people into action at last, and the people went there and they demonstrated because they knew in their hearts that this was wrong. They knew. The people knew.
Patrik: Yeah, people voted with their feet. No matter what the judge did, people were voting with their feet.
Megan: With their feet. Yeah.
Patrik: No matter what the court decided, they will be very, very careful going forward. There will be another Charlie Gard and there will be another Alfie Evans. It’s not…
The 1:1 consulting session will continue in next week’s episode.
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?
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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
- 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 you 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!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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