Patrik Hutzel Live Consultation: Dad's in ICU with Pulmonary Fibrosis, Can He Have a Lung Transplant?

Patrik Hutzel Live Consultation: Dad’s in ICU with Pulmonary Fibrosis, Can He Have a Lung Transplant?

Patrik Hutzel: Hello and welcome to another Emergency Questions and Answers for Families in Intensive Care and Intensive Care at Home. My name is Patrik Hutzel. I’m your host of the show. I want to welcome all of you, whether you’re live on the show or whether you are watching this on replay. There’s quite a few people always watching this on replay as well.

So, before we go into today’s questions and answers, I can already see questions in the chat pad. So, thank you, Tracy, for posting them here.

If you like my work, subscribe to my YouTube channel, click the like button and the notification bell and share this video with your friends and families of course, and always comment below what you want to see next, what questions and insights you have so I can obviously make the right content for you.

So, before we go into today’s questions, what makes me qualified to answer questions for families in intensive care and Intensive Care at Home? Once again, my name is Patrik Hutzel. I’m a critical care nurse by background. I have been working in critical care nursing for 25 years in three different countries where I worked as a nurse unit manager in critical care, and I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com. I can confidently, very confidently say that we have saved many lives for our clients and members when they have a loved one in intensive care. You can verify that on our testimonial section at intensivecarehotline.com or you can verify it on our intensivecarehotline.com podcast section where we’ve done client interviews.

I’m also the founder and managing director of Intensive Care at Home. With Intensive Care at Home, we’re sending our critical care nurses into the home predominantly for long-term ventilated adults and children with tracheostomies, but also home TPN, Home BIPAP (Bilevel Positive Airway Pressure), Home CPAP (Continuous Positive Airway Pressure) without tracheostomy and tracheostomy without ventilation. We’re also providing port management, Hickman’s line management, central line management, and PICC (Peripherally Inserted Central Catheter) line management at home. We’re also providing ventilation weaning at home, IV antibiotics, IV fluids, palliative care at home.

With Intensive Care at Home, we are currently operating all around Australia in all major capital cities as well as in all regional and rural areas. We are NDIS (National Disability Insurance Scheme) approved all around the country, TAC (Transport Accident Commission) and WorkSafe in Victoria, iCare in New South Wales, NIISQ (National Injury Insurance Scheme in Queensland), and DVA Department of Veteran Affairs) all around the country. Also, we have received funding through public hospitals, private health funds, as well as departments of health.

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Without further ado, we will be going for about an hour. I will wrap this up in about an hour, so if you want to talk to me, type your questions into the chat pad or even better if you can connect with me here live on the show on StreamYard. I’ve just posted the link in there so you can just click on that link and then I’ll get you in as soon as I’ve answered Tracy’s question.

So, Tracy, you are writing. “Good evening, Patrik. My dad has been in ICU for over three weeks after attending accident and emergency, which is ED or ER. As he couldn’t breathe, he was taken to resus as his SATs were 50% oxygen on arrival. The next day, he was in an induced coma.” Wow, okay.

“In ICU, he successfully came out after 42 hours and put back into another induced coma 32 hours later due to blood oxygen. His diagnosis was ILD (Interstitial Lung Disease) with severe pneumonia. I was told he was making progress.”

Then you are saying, “Pneumonia was clear and inhalers to manage his ILD. As soon as his oxygen levels were safe for the ward, that would be his next step. However, for two weeks now, they have been unable to remove the high flow nasal prongs. Oxygen via the ECMO machine is steeped from 40% of oxygen to 82% SATs to 70% oxygen with 92% SATs. He’s been checked for everything. He’s infection free but still needs so much oxygen, steroids. Then, have been given via a drip for three days and dad has been told”, and I assume you are referring to steroids here, “Have been given via a drip for three days and dad has been told if they don’t work, he’s going to start deteriorating and they will start end-of-life treatment to make him more comfortable. He’s made no improvement today. He’s been moved from ICU to ED ICU.

My question is, if dad’s still eating and drinking, reading, talking, fully awake and aware, is end-of-life his only option and would it be possible for him to have end-of-life care with him needing so much oxygen? He has been told so many different things that this isn’t the ending we all were expecting. Thank you.”

All right, Tracy, let’s just clarify some terminology here also for our viewers. ILD is Interstitial Lung Disease. It’s also known as lung fibrosis. Now, the first question that I have, Tracy, is your dad on ECMO (Extracorporeal membrane oxygenation)? It sounds to me like he was on ECMO, but is he still on ECMO? I kind of doubt that he’s still on ECMO if he’s been moved out of ICU into what sounds to me like a step-down ICU or a HDU (High-Dependency Unit). Can you please clarify if your dad is still on ECMO? That would be the first thing because if he still is on ECMO, he might be awake. The ECMO might be taking over the function of the lungs and he might be perfectly awake.

So, two questions here, Tracy. Is your dad on ECMO? What’s your dad’s age? How old is your dad?

Just hang on, there’s Leanne. “High flow oxygen. Sister here” Okay, I see, I see.

Not on ECMO. Okay, so let me ask you this and I say it with a smile on my face. Your dad is eating, drinking, talking, reading. Does that sound like someone who’s dying? With everything that you’ve shared with me here with, it doesn’t sound like you are talking about the person that’s dying. Your dad is 66.

So, what is important in a situation like this is you have to watch what is actually happening. Not so much what people are saying. The intensive care team potentially is trying to create a narrative of end of life. Well, your dad’s talking to you, he’s eating, he’s drinking, he’s reading. It doesn’t sound to me like that’s someone who’s dying.

Now, that will probably not stop the intensive care team from creating a narrative about end of life because that is in their interest. They don’t want to put any more resources in your dad, which is why they’re starting the narrative about end of life. As simple as that.

So, how much oxygen does he need? Let’s just dig down a little bit deeper. So, he’s on the high flow nasal prongs. How much oxygen does he need or how much flow is he on? Also, how many days has he been off ECMO? Those are questions that are all important.

He’s fully awake. He’s 66. So, does that sound like someone who’s dying, Tracy? I know what it looks like if people are dying. I’ve seen plenty of people dying in ICU, with Intensive Care at Home as well. You’re not telling me a person who’s dying, am I wrong here? You are believing the narrative that they are giving you.

60 to 75% on 35 flow, that’s a fair bit. That’s a fair bit. No, that’s a fair amount. What’s his oxygen saturation like? What’s his oxygen saturation like?

Also, Tracy and Leanne, don’t be shy in coming onto the call here. If you want to talk to me, just click on that link. Don’t be shy, I don’t bite. I do believe your questions can be answered so much quicker if you come on the call here. Your questions will be answered so much quicker. Just click on that link and talk to me.

So, what’s his oxygen saturation? Also, he’s still on the steroid drip. Then, the other thing is its 92. All right.

So, few other things here. Interstitial lung disease, also known as lung fibrosis. Now, the challenge you have with interstitial lung disease is basically means it’s scar tissue and inflammation on the lungs. That means the lungs are really stiff and they lack compliance. When we are breathing in, the lungs are elastic and that’s one of the reasons why there’s gas exchange happening. Oxygen in, carbon dioxide out. Now, if there’s interstitial lung disease and there’s inflammation and scarring, it means the lungs are no longer elastic and the lungs are what’s called resistant.

“He’s had his last drip today.” What do you mean with last drip? Last drip of what? Last drip of steroids. Please be specific. So, obviously he’s come off the ECMO. How long ago did he come off ECMO? That would be really important to know. How long ago did he come off ECMO? Okay, Leanne, hang on.

Patrik Hutzel: Hi Leanne, how are you?

Leanne: Hi. Okay.

Patrik Hutzel: That’s good. Thank you. Thank you for joining because I think that’s the quickest way we can map out any questions that you have. So, Leanne, how many days has your dad been off ECMO for?

Leanne: He was on an induced coma. He was in an induced coma for two days, out for 12 hours breathing by himself. Then, he went back on for two more days and has been out for 23 days on high flow oxygen. It’s up and down all the time, but on the slightest he only has to, well before, the steroids in the previous 20 days, 21 days. It’s like when he coughs, speaks, eats, his saturations drop.

Patrik Hutzel: Okay. Now, that paints a better picture. How long ago was the ECMO removed? How many days?

Leanne: 23.

Patrik Hutzel: 23 days ago, or on the 23rd of January?

Leanne: 23 days ago.

Patrik Hutzel: 23 days ago. Okay. How many days was he on ECMO?

Leanne: He was on for two. Is ECMO the same as ventilator in induced coma?

Patrik Hutzel: No.

Leanne: He hasn’t been on ECMO then.

Patrik Hutzel: Okay. Okay. But ECMO would’ve been discussed?

Leanne: I haven’t heard of any ECMO. He does have a thing in his neck just to take blood or something. I know there did have little things on, but other than the ventilator and the induced coma, that’s the only other things I know he’s been on.

Patrik Hutzel: Oh, okay, because in one of your messages you’re saying oxygen via the ECMO machine is steeped from 40%.

Leanne: I think she’s given you the precise name of the actual machine that produces the high flow.

Patrik Hutzel: Okay. That’s okay. That’s okay. Now, is this diagnosis, the interstitial lung disease, is that a new diagnosis or did you know about that before this admission?

Leanne: It’s a new diagnosis, but they said he should have been diagnosed with it back in 2021. It’s a misdiagnosis or something.

Patrik Hutzel: Okay. Did your dad have COVID?

Leanne: No.

Patrik Hutzel: Okay. All right. Okay.

Leanne: Sorry to interrupt you. He was working up until three days before he went in. He was a builder on a building site. He always has a really good lifestyle, eat healthy, doesn’t smoke. It’s a real shock.

Patrik Hutzel: This comes out of nowhere.

Leanne: Hm-hmm.

Patrik Hutzel: Wow. Wow.

Leanne: Plus, I also forgot to mention he’s had a consistent cough for over two years.

Patrik Hutzel: Okay. If he’s a builder, is he potentially exposed to asbestos?

Leanne: Yeah. Yeah, they did mention that. They also mentioned they’ve talked to two specialists. One thinks it’s idiopathic fibrosis, pulmonary idiopathic

Patrik Hutzel: Idiopathic. Pretty much the same then.

Leanne: Yeah. Another specialist has said they don’t think it’s that, they think it’s inflammatory.

Patrik Hutzel: Inflammatory?

Leanne: Yeah.

Patrik Hutzel: An inflammatory disorder?

Leanne: But he’s said he’s had every test, he’s been tested for pneumonia, fungal, HIV.

Patrik Hutzel: Viral?

Leanne: Viral, and all of them have come back clear, negative.

Patrik Hutzel: Okay. So, Leanne, the question that I have is do you think he’s dying? What’s your impression? Do you think he’s dying?

Leanne: No, I just think he’s finding it hard to breathe.

Patrik Hutzel: Of course, of course. So he’s eating, he’s drinking, he’s talking?

Leanne: Yeah.

Patrik Hutzel: He’s reading. You mentioned he’s reading.

Leanne: Yeah. He’s sitting out to bed.

Patrik Hutzel: Sitting out of bed. That would’ve been my next question.

Leanne: Yeah.

Patrik Hutzel: Okay. He’s doing all of that on 60% to 75% of oxygen on the high flow?

Leanne: Yeah. But when he does do any activity like that, except for reading, obviously, it starts to drop, and he do have to come over and high everything up. But they’ll stand there with him for a minute and then they’ll allow it all back down or leave him like that for the bit and then come over with it when he’s back to where they want him to be type of thing.

Patrik Hutzel: Right. Okay. So, getting out of bed is obviously exhausting him. He’s getting short of breath, but then he recovers.

Leanne: Yeah.

Patrik Hutzel: Yeah. Okay. Okay. Now, have they mentioned, in any of these, a lung transplant?

Leanne: I asked him today about a lung transplant and he said that’s our option for your dad because your dad’s not well enough. So, when he said that, I said I watched a video of yours and you talked about perceived, predicted end of life and real end of life. So, we asked him that question, I said, “Is this a real end of life or the perceived end of life?” He said, “Well, I’m just at the top of the road here and I don’t know which way to turn down.”

Patrik Hutzel: Who did you ask that question to? Who’s the primary physician at the moment that’s sort of in charge of his care?

Leanne: It’s just like one of the doctors on the ICU.

Patrik Hutzel: Okay, it’s still ICU making decisions.

Leanne: I think they have spoken to specialists. I can find that out.

Patrik Hutzel: Okay. Whereabouts, are you in Manchester, Liverpool?

Leanne: Liverpool.

Patrik Hutzel: Liverpool.

Leanne: He’s at Aintree Hospital.

Patrik Hutzel: Aintree Hospital. Look, I used to work in Liverpool and Manchester a long, long time ago.

Leanne: Wow. What’s chances?

Patrik Hutzel: I used to do some work at the children’s hospital in Liverpool in ICU at Alder Hey.

Leanne: Alder Hey. Yeah.

Patrik Hutzel: Anyway. So, look, I do believe the discussion around a lung transplant needs to be had. So obviously, they want to talk about end of life. I think you need to bring this discussion back to a lung transplant. You’re asking in one of your questions, can he have end of life at home with that high level of oxygen? Yes, he could. However, I can tell you there would be patients at home on high flow nasal prongs waiting for a lung transplant in a similar condition. So, therefore, I do believe the question of a lung transplant needs to be brought up. Now, I don’t exactly know what the cutoff is in the NHS. There might be a cutoff for a particular age.

Leanne: He did mention something about you don’t offer it to patients on ICU. It has to be like an outpatient at home.

Patrik Hutzel: Okay. What’s your dad on at the moment? He’s got the high flow nasal prongs. He’s got the steroids. Do you know if he is using BIPAP (Bilevel Positive Airway Pressure) on and off? Do you know what I mean by that?

Leanne: I know what you mean.

Patrik Hutzel: BIPAP like when they take the high flow off, do they put him on a mask?

Leanne: They put him on a mask, but it’s just the one on the strings at the sides. It’s not like the very tight one that’s very fit. He did go on that one for a little bit, if that’s the one that you mean. But when he swaps over now when he had to, he blows his nose and that was uncomfortable. So, he put this one on for a bit, but it was just two skinny green strings here.

Patrik Hutzel: Okay. How long is he using that for?

Leanne: Not long because he does find the other one better because he can speak, eat.

Patrik Hutzel: Yeah. If he is using that one, if he’s using the mask, is his saturation coming up?

Leanne: His saturation’s okay with that one.

Patrik Hutzel: But is it going higher than 92?

Leanne: I haven’t noticed. Is that something to look out for?

Patrik Hutzel: Would be interesting to know. Definitely something to look out for. Or is it even dipping, but I don’t think it’s dipping. How often is he using that?

Leanne: Would you suggest that one’s better to use?

Patrik Hutzel: It is probably more uncomfortable. You’ve already identified that it’s more uncomfortable.

Leanne: The nasal one is most probably the one I would’ve thought was more uncomfortable, but he prefers the nasal one because he can eat and speak.

Patrik Hutzel: Of course. Of course. So, the mask, is that attached to a ventilator?

Leanne: Yeah.

Patrik Hutzel: Okay. So, it’s not a case of which one do I prefer? It’s a case of which one does he need, and I would argue that when they put him on the mask, I would think that his oxygen saturation is actually going up. Now, the BIPAP would be more uncomfortable, no question, but also more effective.

Leanne: Yeah.

Patrik Hutzel: Yes, he couldn’t eat and drink of course, but that’s also one of the reasons I have been wondering why is your dad still in ICU if he’s on the high flow nasal prongs because they might be able to manage that on the ward. However, now that I know he’s also on the BIPAP on and off, that also makes sense to me why he’s still in ICU.

Leanne: Yeah, they said he wouldn’t be able to go on a ward with this much oxygen.

Patrik Hutzel: Yeah, I’m not surprised. Look, some hospitals have respiratory wards that can manage the high flow nasal prongs even on high levels of oxygen. However, now that I know he’s also on BIPAP or the CPAP (Continuous positive airway pressure), that would definitely prohibit him from going to the ward. Now, Tracy is saying here, Tracy’s your sister Leanne. Is that right?

Leanne: Yeah.

Patrik Hutzel: So, your sister is saying. “It’s like they have all given up on him. Now, they say the steroids are the last and if they don’t work, there’s nothing else they can do. It would be end of life and they’re not working.” Does your dad have an advanced care plan?

Leanne: What’s that?

Patrik Hutzel: So, an advanced care plan is basically, anyone can have an advanced care plan, basically saying something along the lines of, “Hey, if I am ever in a situation like this, I want everything to be done. If I’m in a situation like this, I don’t want everything to be done. I just want to die comfortably, whatever.” This is about expressing your wishes for medical treatment or lack thereof.

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Leanne: Well, my dad told me today that he wants to live. He doesn’t want to die.

Patrik Hutzel: Okay. Has he expressed that to them?

Leanne: I’m not too sure.

Patrik Hutzel: It’s important that he does. I think it’s very important that he does.

Leanne: Okay.

Patrik Hutzel: That’s number one. Number two, but this is not documented somewhere in an advanced care plan in a living document. It’s not documented?

Leanne: I’m not too sure, but I’ll check that out tomorrow for sure.

Patrik Hutzel: I would. If it’s not documented, I would recommend that you do or that your dad does.

Leanne: Definitely.

Patrik Hutzel: So, now that I understand more about your dad’s situation, a couple of more questions. Do you know his heart is working fine, there’s no issues with heart?

Leanne: They did mention something about right heart thickening.

Patrik Hutzel: Which would tie right in with the ILD.

Leanne: Where it’s been working so hard because of the lungs and stuff.

Patrik Hutzel: Do you know whether he’s on medication for the right heart?

Leanne: They haven’t mentioned anything. The only medication that he’s being on is the steroids.

Patrik Hutzel: Steroids. What about nebulizers? Is he on nebulizers?

Leanne: He did have a nebulizer. Yeah, you’re right.

Patrik Hutzel: Regularly?

Leanne: I think so. I think they given them for a couple of nights, maybe a week or four nights.

Patrik Hutzel: All right. Just to refresh my memory, when he was intubated, how many days was he intubated? Just for a few days. Four or five days?

Leanne: Two days on, off for 12 hours, and then two days back on.

Patrik Hutzel: All right, so that’s not too bad at all. I mean in the bigger scheme of things that they could get him off the vent later quickly. That’s not too bad at all. Do you know if he’s on inotropes or vasopressors for a low blood pressure? Do you know whether he’s got a low blood pressure?

Leanne: He has high blood pressure.

Patrik Hutzel: He has high blood pressure. Okay, good. Well, not good, but that’s better actually than low blood pressure.

Leanne: Than low blood pressure.

Patrik Hutzel: Okay, that’s good. Kidneys are working?

Leanne: Yeah.

Patrik Hutzel: Kidneys are working. Is he in pain?

Leanne: No.

Patrik Hutzel: Okay, not in pain. Liver is working? No talks about liver not working?

Leanne: No, nothing.

Patrik Hutzel: All right. So. the way forward here that I can see is I do believe you need to start advocating for a lung transplant. Like I said, there would be some rules within the NHS. The cutoff for a lung transplant might be 65, but I’m a big believer that everything is negotiable in life. It also sounds to me like right up until this happened, your dad was fit and healthy.

Leanne: Definitely.

Patrik Hutzel: He was working?

Leanne: Yeah, working, going on holiday, walking up mountains, as healthy, didn’t smoke.

Patrik Hutzel: Then, this hits him out of nowhere?

Leanne: Yeah, the only thing he’s had was that cough, which he’d been going to doctors for just getting no answers ongoing.

Patrik Hutzel: Did they do an x-ray, chest x-ray leading up to this hospital admission?

Leanne: He went for one, I’d say maybe two weeks prior to the admission.

Patrik Hutzel: Two weeks prior. But the family doctor that was looking after the cough did not think of doing an x-ray?

Leanne: No.

Patrik Hutzel: This could have potentially been sussed out earlier.

Leanne: Definitely, yeah. Something that was of course earlier could have been prevented.

Patrik Hutzel: Yeah. Okay. Look, they obviously want to talk about end of life. Where I see this going is I see this going towards a lung transplant. I think you need to start advocating for that. Do you think your dad is open to that?

Leanne: Yeah, definitely. If he wants to live.

Patrik Hutzel: I think that the conversation needs to be moved towards that. They’re not giving him any sedation, any morphine, anything that’s sort of helping him with comfort? There is no discomfort besides the breathing is from what I’m hearing.

Leanne: Yeah. They’re not giving him nothing. The only thing he’s on is the steroids.

Patrik Hutzel: Okay. What about DNR? Do you know what I mean with DNR? Do not resuscitate.

Leanne: Yeah. My sister mentioned that to me tonight, so we’re going to see about that tomorrow.

Patrik Hutzel: Okay. What are they saying about them?

Leanne: I don’t know. Is Tracy saying anything? I can’t see nothing right now. Let’s say chat.

Patrik Hutzel: Tracy hasn’t said anything there, but it would be good to get an idea about what’s happening. Tracy can come on the call here too if she wants to just use the same link because what I can see in a situation like that, Leanne, is that they might want to push for a DNR.

Leanne: Would they have to ask me for that, or I guess to want permission for that?

Patrik Hutzel: Unfortunately, not in the U.K. The NHS can pretty much do whatever they want. However, it comes back to me to what I said before, I do believe you need to push back very hard. You need to push back very hard on this, especially since your dad is awake and can make his own decision. The U.K. is the only health system in English-speaking countries where they can pretty much just issue DNRs whichever way they see fit. As far as I’m concerned, it’s wrong on all ends.

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Leanne: Definitely.

Patrik Hutzel: I think you need to push back very hard there and your dad needs to be the decision-maker here, not the NHS. Because one thing that happens after a DNR is potentially issued, I do believe it’s half of the death sentence. People are saying, “Oh yeah, this person is DNR, let’s just wind everything down.” Just to prepare you for what they will say to you, they will tell you that resuscitating a patient can fracture ribs.

Leanne: Cause more damage.

Patrik Hutzel: And that is true.

Leanne: But he’s gone in that situation. What more harm could you do?

Patrik Hutzel: What more harm could you do?

Leanne: Yeah, exactly.

Patrik Hutzel: So just be prepared, that is what they’re going to tell you. They say resuscitating someone is cruel instead of looking at it well, it saves someone’s life or at least it has the potential to save someone’s life.

Tracey is saying that, “They’re telling dad he’s going to deteriorate if the steroids don’t work. He’s even giving himself till Sunday as that’s what the doctors keep saying.” Look, nobody knows whether the steroids might be kicking in tomorrow. The ICUs are always working with timelines, with artificial timelines that they give themselves in saying, “Well if it’s not working by Sunday, then from that point onwards we’ll only talk about end of life.” I do believe you need to move that conversation away from end of life and towards a lung transplant.

Got Tracy here now as well. Hi Tracy.

Tracy: Hi.

Patrik Hutzel: Did you want anything to add here?

Tracy: Yeah, the DNR. It’s got to the point where when I’ve tried to mention the DNR, even though it didn’t want to be mentioned, it has to be an option to be explored. They’ve made me think that even a DNR wouldn’t be advisable because they don’t even put my dad off even getting another option to be ventilated again. That I’ll be in the presence of two different doctors saying you won’t survive another ventilation. Even if you do come out of another ventilation, your lungs are too weak. You’ll still be in the same position, and you are in now and we will be unable to help you. At the same time. We are only allowed on the ward one till seven. There’s doctors that are coming round when we’re absent, we come into dad and dad’s like, “They’ve told me that’s it. They told me if this doesn’t kick in it’s not working.”

We don’t know what he’s getting told when we’re not there. Ot’s been three weeks now, Patrik, and he’s had these nasals up his nose. He’s getting tired. As the doctor said today, he’s got his head out the car window. I do feel like ventilation would be an option if it come to it and that’s why they’re trying to change dad’s mind to not be an option to the point where they’re saying to dad, “Why didn’t you like the ventilation? What didn’t you like about it?”

Leanne: Like putting him off it.

Tracy: Putting him off so it’s not even an option to getting it again. But I know they have to do that. They are trying to put things in place now to say, “No, he didn’t want that.” Or if he does deteriorate, but now he’s actually given himself to Sunday, Patrik, if these steroids don’t work by Sunday, that’s it. I may lose the heart.

Patrik Hutzel: That’s sort of what they’re also putting in his head, especially when you’re not there.

Tracy: Yeah, definitely. Would you agree, Leanne?

Leanne: Yeah.

Patrik Hutzel: So, psychologically they’re putting him in a very dark place just by talking to him.

Tracy: Yeah.

Patrik Hutzel: Giving him the doom and gloom.

Tracy: Yeah. The tough thing is as well, Patrik, is that two days prior he had different doctors saying once these steroids to kick in, you’ll be all right. He’s going, “Well will the steroids kick in? When will I be able to breathe again?” And they’re like, “Well they’re going to kick in.” Two days prior to that, we were going to go home on the inhalers two days before that. So, it’s been a real rollercoaster over the past few weeks and now it’s got to gloom and doom so quickly.

Patrik Hutzel: Yeah. Okay. So, I’ll tell you what the issue is with interstitial lung disease, if he does need to go back on the ventilator, it will be difficult to come off it because there’s scar tissue on the lungs and they’re really stiff now. So, it is going to be difficult to get off the ventilator, if God forbid, he needs to go back on it. That part, I agree with the doctors, but if you look at the patient population that are on lung transplant lists, I don’t have the exact figures, but a lot of those patients would be interstitial lung disease which is also known as fibrosis. So, your dad, as far as I can see, fits the criteria that many other patients fit when they are being put on a lung transplant list.

Now, what rules out a patient going on a lung transplant, at least from my experience is if people are no longer walking, talking, mobilizing, they’re completely bed bound. Now once again, that is not the case in your dad’s situation, he’s still getting out of bed every day from what I’m understanding. He’s eating, drinking, he’s got his brains about him. He can make his own decisions. So, that as far as I can see is similar to most other patients that would be waiting for a lung transplant. So, timing here is of essence.

Tracy: Sorry, Patrik, can I just interrupt you? Today, last night, they made the decision to move dad to this lower ward and since he’s moved, he hasn’t got out of bed today. He never got out of bed yesterday. So, even though he was doing all that the last couple of days, it’s like these steroids aren’t going to work, let’s stop everything now, we’re not even getting you out of bed.

Leanne: Patrik’s saying it’s a push for the lung transplant.

Tracy: Yeah.

Patrik Hutzel: I would. I do believe that is the only way forward. Can he go home on high flow nasal prongs? Yes, he can. Even on 60%, 70% of oxygen, however, he would probably need 24-hour nursing care, and you would need someone that can pull that off in Liverpool. I’m not sure whether there is someone, it’s definitely possible. I don’t know how much research you’ve done. We are looking after ventilated patients at home with tracheostomies, ventilation. We are doing that at home in Australia, here in Melbourne, Sydney, Brisbane. It’s definitely possible your dad could go home on high flow nasal prongs, but you need a service that can pull that off.

Leanne: Control it. Yeah.

Patrik Hutzel: When you say he’s moved from ICU, where did he move to? A step-down ICU, like a HDU, high dependency.

Tracy: It’s like a step-down where the patients that are waiting to go onto the ICU ward or waiting to go onto another intensive ward. But at the same time, I’ve done research on the internet, I’ve done a research and it says they tend to put patients here. What was the word, Leanne?

Patrik Hutzel: It’s not palliative care, is it? It’s not a palliative care?

Leanne: Well like type of thing. She’s most probably gone to look now, what it was called, dumping ground.

Patrik Hutzel: Dump ground?

Leanne: Yeah. When she’s put it in the thing, it’s known as the ICU dumping ground. Basically patient who are terminally ill at the end of life or palliative care.

Patrik Hutzel: So, who’s using that term? Who’s using that term? ICU dumping ground. That’s terrible. Who would be using-

Tracy: Well, that’s give us the fright today. There was a letter up on dad’s board today for when the nurses come in and even to the point where in the ICU ward he has a board and it says Tommy and it says, “What’s your dad’s…” What is it Leanne?

Leanne: Get back to the dumping ground thing, what you were telling him. You researched this because he’d been moved to a different ward. Why is he being moved? They told us because he was getting disturbed by a man over facing. That had been brought in with the police, they were disturbing him. So, when we asked dad, dad was like, “Oh no, it’s a little bit of entertainment for me.” Then when we went today and we went to get into the way we usually get in, he said, “Oh, he’s been moved round because it is a little bit more private for him around here.” I just don’t know. Then, my sister researched it, what does this mean when they move to this type of ward.

Tracy: Yeah, because I questioned it. I thought if there was a patient on the ICU ward that was making such a noise, then why didn’t that patient get moved? It didn’t make sense to me that why did move my father and not the other patients.

Leanne: And not all the other patients when you disturb everyone else, type of thing.

Tracy: My dad said the nurse has a chat with the other nurse and then the other nurse come back and went, “I think it’s best if we move you because your family won’t be happy if you don’t get enough sleep.” So, they moved him this little corridor where patients are waiting to get on the ICU ward, patients are too sick to go down to the ward and patients end of life basically. Just basically that term, what I’ve just said to you, dumping ground.

Patrik Hutzel: This is an official term, dumping ground, or is this an informal term they’re using there?

Leanne: I’m not too sure.

Tracy: I’ve seen the words on the board and then I’ve researched them and then when I’ve researched it, it’s an ED ICU and an ED ICU is where patients go. We were waiting to go into the ICU ward or into another important ward. The two sit and go down to a normal ward, but at the same time it’s getting used as a dumping ground for end of life care.

Patrik Hutzel: That is absolutely shocking to even use such a term.

Leanne: No, it’s vile, it’s disgusting.

Patrik Hutzel: Unbelievable. Unbelievable. Okay, this happened today, Saturday?

Leanne: Last night.

Patrik Hutzel: Last night?

Leanne: Yeah.

Patrik Hutzel: Did you know that they were planning to do this?

Leanne: No. No.

Patrik Hutzel: It just comes out of nowhere.

Tracy: Sorry, Patrik, they done it like, not sneaky, but if he was to get moved, couldn’t it go through us? They said, “Oh, we’re moving you because of this other patient”, and my dad says, “No, I’m all right, so I’m all right. I’m quite happy here.”

Leanne: A bit of entertainment.

Tracy: Then back over and gone, “No, your family’s not going to be happy.” So, because we’re being quite protective of him right now, he thought, “I don’t want my family upset. I’ll move.” So he’s moved.

Patrik Hutzel: Oh, my goodness. It’s just absolutely shocking what I’m hearing here, just absolutely shocking. Especially in light of the fact that they have now moved him and trying to hone down on that narrative about end of life and whatnot. I think you need to act pretty swiftly here and start talking about the lung transplant instead.

Leanne: Yeah. And get the DNR in place.

Patrik Hutzel: Well, I would not get the DNR in place. I would not.

Leanne: Oh, taken out of places. Taken out of place, I mean, yeah. Sorry, through the way around. Definitely through the way around.

Tracy: Yeah. The DNR, if anything was to happen to dad, they’ll resuscitate and bring them back to life, so if they put that in place and then it-

Leanne: Yeah, you must put that in place. Yeah. Yeah. Sorry, I got confused.

Patrik Hutzel: Don’t want that in place.

Leanne: Definitely don’t want that in place. I got confused.

Patrik Hutzel: Given what you’re telling me here, I’m concerned that it might already be in place. I’m very concerned about that.

Tracy: So am I. I wanted to mention that today, but we thought, we had high hopes that these steroids would kick in. That was the whole family. It was like, “Don’t talk about that. Don’t talk about that. Let the steroids kick in.” I felt like I was uncomfortable to talk about that. I was upsetting the family a bit more.

Leanne: But not if you’re saying we don’t want that in place.

Tracy: These steroids don’t kick in. I am having words with Leanne at the same time. Emotions are running high, anxiety is running high. I didn’t want to put it in place, it was or not, but at the time I don’t know.

Leanne: But when we go in tomorrow, we’re going to make sure there’s not one of them in place. Where else did we do, Patrik? About the lung transplant?

Patrik Hutzel: I will tell you how I would go about it if I was you, obviously you need to start mentioning it. Do you know if the same team that looked after him in ICU is now also in charge?

Leanne: No.

Patrik Hutzel: Different team?

Leanne: Yeah.

Patrik Hutzel: Is this a palliative care team? Do you know?

Leanne: No, but we can find out.

Tracy: Yeah. No, it is. It is because he was the one that mentioned to dad in our absence this morning. It is a palliative care team because he was the one that mentioned to dad this morning that, “If these steroids don’t kick in by Sunday you’re going to start deteriorating and we will start giving you end-of-life medication to make you more comfortable.” So, that to me says the doctor is a palliative care team.

Patrik Hutzel: Okay, so if they’re starting to talk about giving you medication that makes you more comfortable, they would be talking about medications such as morphine, fentanyl, midazolam. Now, the minute he gets those medications, his cognition will start to deteriorate and then he will be less and less cognizant about what’s going on around him. That in my eyes, could be perceived as euthanasia. Do you know what I mean with euthanasia?

Tracy: Yeah.

Leanne: Yeah.

Patrik Hutzel: Euthanasia is still illegal. Even though it’s happening every day in ICU, it’s happening every day in ICU, it is still illegal. Just no one wants to call them out on it.

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Tracy: Yeah.

Leanne: How do we stop that from happening? I did mention to my sister straight after, someone needs to be a power of attorney.

Patrik Hutzel: Is there a power of attorney?

Tracy: I was mentioning that with my sister’s today, but she didn’t really want to go into that again, because as again, we were all upset, but that’s something that we’re doing.

Patrik Hutzel: The minute they start giving him morphine, midazolam, whatever, that makes him more drowsy, you will see your dad literally fading away in front of your very eyes and there’s nothing you can do because they’re pumping him full of the stuff that will hasten death. It will hasten death. One of the main side effects of morphine in particular, morphine, fentanyl, one of the main side effects is it stops or inhibits your natural respiratory drive. Now, your dad is already respiratory compromised. The minute they give him morphine or fentanyl or midazolam, he will basically stop breathing. You absolutely need to put a stop to that. I also believe you need to explain to your dad that he needs to refuse or reject those medications because, at the moment, you can still have coherent conversations with your dad. The minute they start giving him this stuff, it’ll stop.

Tracy: Patrik, I’ve just got a pen here. Can you just write down medications down again for me please?

Patrik Hutzel: Morphine. I’ll put it here in the chat pad. Can you see the chat pad here? Yeah, well you can, I know you can. Midazolam. Can you see what I just typed in there? Can you see that?

Tracy: I can’t, no.

Leanne: I can’t.

Patrik Hutzel: Okay, so morphine.

Tracy: Yeah.

Patrik Hutzel: Fentanyl.

Tracy: Yeah.

Patrik Hutzel: And midazolam. It’s spelt M-I-D-A-Z-O-L-A-M. In the ICU world, especially morphine and midazolam are often referred to as M&M. And fentanyl you spell F-E-N-T-A-N-Y-L. I think you are really, really at a crossroads here where you need to act very quickly.

Now, two more things. When it comes to the decision making around lung transplants, it’s not ICU, generally speaking, it’s the respiratory team. Has the respiratory team been involved in all of this or has it mainly been ICU?

Tracy: Mainly been ICU. They haven’t put it to the respiratory team that much because he’s on that much high oxygen. It’s still ICU concerned. Well, it was at the time, but now because they’ve moved into the ward, basically put him on end of life, it hasn’t been mentioned.

Patrik Hutzel: Okay. Here is another thing that I would recommend you do. Let’s just say everything that you’re trying to do is falling on deaf ears. I would send an email if I were you to the hospital executive. You can find them online and they would have a generic NHS email address. Another thing that I would do, again, if it’s all falling on deaf ears, is to speak to your local MP (Member of parliament). That’s what I would do as well. But most importantly, because you want your dad being coherent, you need to reject any medications that they want to give to basically hasten death because he doesn’t have a lot of reserves respiratory wise.

Leanne: So, is it an option for my dad if he stays off the things that you’ve just mentioned and he’s capable of breathing with the high flow oxygen in the ICU, how long is he allowed to stay like that for?

Patrik Hutzel: Well, look, I wouldn’t put any timelines on it at the moment. How long can a patient stay in ICU? Always comes back to that question. Patients can stay in ICU for a long time and especially your dad has his wits about him. You would’ve seen him in an induced coma. The question is always, “Well, how long can you keep someone in an induced coma?” That time to a degree is limited, than patients need a tracheostomy and that’s sort of a different path. But in your dad’s situation, I actually think he has way more time than other patients because he’s still awake. Well, let’s keep him awake.

Leanne: Yeah, definitely.

Patrik Hutzel: The minute-

Tracy: Sorry to interrupt you, Patrik, I feel like it’s not the information that’s fallen on deaf ears. We feel like we don’t know our sort of rights with the dad. We don’t know what we’re capable of saying. Or as I say, I knew the DNR needed to be put in place. I knew he needs a power of attorney with my dad saying that the doctors are coming and seeing him today saying if these don’t work, we’re putting you on this medication and you’re going to lose all your function. So, we need to know that we’re able to give it to you. So basically, they’re asking my dad’s permission today, this morning when we were there, to give him this medication if these steroids don’t work till Sunday, to the point where dad thinks on Sunday, if the steroids don’t kick in.

Leanne: He’s dead.

Tracy: We don’t know our rights. We don’t know is my dad allowed to stay on there? We just don’t know. We’re just wiser.

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Patrik Hutzel: Exactly. Exactly. Who’s to say if they don’t work by Sunday, they would work by Tuesday. I mean, where’s that coming from?

Leanne: Exactly. Yeah.

Patrik Hutzel: It really sounds to me like they psychologically manipulate him by basically putting in his head, “Well, if the steroids don’t work by Sunday, your best option is palliative care and death.” That’s what it sounds like to me. They’re trying to prepare him for mentally.

Leanne: Yeah, definitely.

Tracy: Yeah, and he’s at a tough couple of weeks. The first coma he come out of, we were all there. The second coma, he went, “I don’t want to do that again, but I’ll do it again for you, but I don’t want everyone there.” The second coma sort of traumatized him, it got in his brain a bit more. He was more emotional. He was more traumatized by the whole experience. So, he’s pretty vulnerable right now and he’s being strong for us. But at the same time, he’s vulnerable and he’s got loads of people around him saying all different things and he doesn’t know what to believe anymore. It’s just a shame.

Patrik Hutzel: Yeah, no, I think unfortunately you don’t have a lot of time here to advocate for what you need to advocate for and explain to your dad that the minute they give him morphine, fentanyl, midazolam, you’ll go down the drain. He’ll die.

Leanne: eah, there’s no going back.

Patrik Hutzel: He’ll die.

Leanne: Once that happens, there’s no coming back from it.

Patrik Hutzel: No coming back.

Leanne: Yeah.

Patrik Hutzel: There’s no coming back.

Tracy: So, we’ll just have to tell dad tomorrow, even though steroids might not work till Sunday, you’re going to have to stay on this machine.

Leanne: Yeah, because, Tracy, as Patrik just said, who’s going to say they’re not going to work Tuesday, Thursday? Give them a chance. If he’s been that severely ill, isn’t that just common sense to give him time?

Patrik Hutzel: I’ll tell you another thing because I do need to wrap this up in a couple of minutes. I tell you another thing. So, I have seen over the years in ICU, you have a patient like your dad coming in into ICU with similar conditions. I have seen some patients being fast tracked for a lung transplant, I have. They go on the top of the list because their prognosis is so poor. And because they are already in ICU, they are in a good environment that if a donor lung becomes available, they are in a good environment to have that transplant straight away. But this requires for someone to push him at the top of the list. Now, we don’t know who else is waiting of course. We don’t know how urgent it is for other patients to get a lung transplant. It’s a bit of a lottery, unfortunately, but he is in the right environment to have this happen now if a set of donor lungs becomes available.

Leanne: Yeah. Patrik, thank you so, so much for your time. I appreciate it. I really do.

Patrik Hutzel: It’s been a pleasure.

Leanne: For all your advice. And I’d be forever grateful.

Patrik Hutzel: It’s only a pleasure. You know what you need to do, given that you don’t have a lot of time, I do believe you need to get in fairly hard.

Leanne: Yeah, definitely.

Patrik Hutzel: Because they are already playing hard ball. For them, they’ve written him off.

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Leanne: Yeah.

Patrik Hutzel: I think you need to go in fairly hard there without-

Leanne: Holding back

Patrik Hutzel: To get the best outcome.

Leanne: Yeah, definitely. Thank you so much, Patrik, for your time.

Patrik Hutzel: It’s a pleasure. It’s a pleasure. Thank you for coming on.

Leanne: All right. Speak to you soon, hopefully with good news.

Patrik Hutzel: Okay, take care.

Tracy: Thanks, Patrik.

Patrik Hutzel: Thank you. Bye. All right. Thank you so much Tracy and Leanne, and I’m very sorry to hear, but you’ve got to fight a good fight here for your dad.

Now, I’m going to wrap this up here. So, if you want one-on-one consulting or if you want to become a member with intensivecarehotline.com, we have a membership for families of critically ill patients in intensive care, go to intensivecarehotline.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected] with your questions.

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I do need to wrap this up now. Thank you so much for watching.

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