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Today's article is about, “INTENSIVE CARE HOTLINE podcast: ICU Deliberately
Killed My Dad by Prematurely Removing His Tracheostomy!”
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INTENSIVE CARE HOTLINE Podcast: ICU Deliberately Killed My Dad by Prematurely Removing His Tracheostomy!
Patrik: 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 Intensive Care Hotline podcast, and
today I have a very special guest. I have Donne with me on the show. Welcome, Donne, and thank you for joining me on this podcast today.
Donne: Hi. Thank you, Patrik. Thank you for this opportunity.
Patrik: It’s a great pleasure and thank you for making the
time. Donne, you’ve had your father in intensive care in the U.K., in the NHS (National Health Service) system not too long ago. You were happy to share your story or your dad’s story here on this podcast. I know your dad’s story because we work together, but do you want to share with our listeners and viewers what eventuated with your dad’s stay in ICU?
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Donne: Yes, sure. Thank you, Patrik. So my father had spinal stenosis, and so he was going for his fourth spinal decompression surgery. He’s had two backed in South Africa that were very successful, but obviously just over time, it degenerated. He’s had other successful one in 2019. Then he had this one on the 7th of March this year. The
operation itself went well. It all started where they actually discharged him the very next day. At the age of 75, being his fourth surgery, I did think that that was a little bit crazy, but he walked out the hospital. They didn’t give him any sort of post-care information, nothing, and he walked himself out. So, that was Thursday.
By the Sunday, the wound was weeping and he started getting pain.
Now with the other procedures, he didn’t have pain. That’s why he is so excited for them because he had horrific back pain, and the pain went immediately. So, that was already a red flag that two, three days later he was already getting some pain. He had chronic pain in the hip and the numbness in the thigh down to the knee, and then the wound was seeping. He phoned the hospital and the orthopedic ward, they said no. Well, they don’t do post-op care. Once you leave, that’s it. But he wasn’t
given any instructions as who to go to. So then when they phoned 111, they were told, “No, it has to be done by professional, by a nurse.”
But yeah, so basically he ran around looking for someone to dress him, change it and couldn’t find anyone. It was just one block after the next. He went there, they needed an appointment. He went there, there were no nurses. Landed up at A & E (Accident &
Emergency Department).
So, Monday was the only day they did something. They did X-rays. They did bloods, all of that. They said that there was no infection. However, I heard my sister on a call to a
friend saying that his CRP (C-Reactive Protein) was raised. It was significantly raised. So saying there was no infection, but they didn’t bring him in, they didn’t follow on.
Then the following week, the pain just got worse and worse and worse. Got to the Friday and he could barely get out of bed. He could barely move. The wound started to weep again, and then they took him back. They didn’t
properly question his meds. My dad took a lot of painkillers and mixed stuff.
He did anything to get rid of his pain. They went and gave him morphine. He had a reaction, and he almost died there. This is before we got to ICU. So, they managed to bring him round and then discharged him again. Didn’t take him in, and so didn’t actually deal with the problem.
By Sunday, the pain was chronic, and he was then delirious and went into A & E. They still took 7, 8 hours to come, and then they only flushed him out the following morning at 11:30.
The next thing, so I get a call, he’s in ICU. I go to ICU Monday the 18th. As you say, you don’t know what you don’t know. It’s so, so true, but
it’s just an awful feeling. I was lying, looking in, I’ve had one or two operations, and I’m thinking, “Surely he should be awake by now.” That was sort of, I think two or three o’clock in the afternoon. Then by 5:00, he still wasn’t awake. They said, “Oh no, some people take a bit longer,” but I had an awful feeling then already. He hadn’t woken up.
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Then the next day I walked in, and they were doing scans. He was on a ventilator. It was a shocking scene, really, to see your father like that. Then, just said, “Yeah, he’s gone into full-blown septic shock,” and they’re very, very worried. Then the next thing, my mom and sister came in and they just said they’re really sorry that the organs are now under strain. He’s going into multi-organ failure
and renal failure. Kidneys are failing. At that point then they were like, “Well, they just don’t know. Don’t know,” like he has no hope that day.
Patrik: When you say no hope, they were painting sort of a doom and gloom picture right from the start?
Donne: Yeah. Well, on that day, I think they thought that was it. “That’s it. He’s going to go, then already.” Amazingly, I have seen miracles take place because the stuff that my dad got through is just, it’s incredible.
It’s astounding. So after the septic shock, having his back opened again in such a short period of time, he pulled through that.
I did notice the nurses weren’t doing much with the back. I
said, “How is the back? How is the back? The whole reason we’ve come in, the wound, is it still weeping? Is it still seeping?” They’re saying… Well, actually, they’re not sure. They’re not sure if someone’s checked it.
Then, the next thing, the temperatures were going up, so we looked again.
He had to
go back into theatre. So, he had his back opened up three times in two weeks, and they then removed all the metalwork. So, he had four operations. They removed all the metalwork, the framework, everything except for the two screws from South Africa, which made me smile a bit.
Good South African screws. So, they removed all the metalwork saying that obviously that the bacteria had attached itself to
the metalwork, that they didn’t have any other choice.
Then he came back. He survived. He got through that. Then, a few days later we noticed, “Oh, the blood pressure’s all over the place. The heart rate is all over the place.” Then, there was definitely some internal bleed somewhere.
Then, they started
investigating that, and they found that there was a blood clot in the stomach and it seemed to be covering an ulcer. So then, they sort of got control of that. That went on for a while. Then, they managed to contain that, and he got through that.
So, my father was there for three months. That was really the first month. But the whole time there was never any talk, never any talk of moving forward
rehabilitation, therapies, possible therapies. Never any talk about tracheostomies, anything like that. Reading a lot of your posts, I see that it’s crucial to get the tube out or at least move them forward. Never any talk.
Every single meeting we had was incredibly negative, doom and gloom.
Even in the very beginning, sorry, I haven’t mentioned. So, from the sepsis, when they said,
“We’re going towards multi-organ failure,” and they said, “but it hadn’t actually affected his brain and his heart,” I thought, “Well, that’s incredible, really,” but then the very next day they said, “No, he wasn’t stable enough for MRI (Magnetic Resonance Imaging), so they had a CT (Computed Tomography) scan.” Then, a few days later he was able to go for the MRI.
Unfortunately, there were septic
emboli that had gone to the brain. So, he had had three strokes. The one stroke had affected the thalamus on both sides.
The strokes had affected the right-hand side of the brain. So his
whole left side was basically not functioning. So, that had all taken place in the beginning.
Patrik: Then I remember, I think when you first made contact, from memory, he didn’t have a tracheostomy. You were just inquiring, do I remember this correctly?
Donne: Yeah, no, they never spoke about the tracheostomy. So whenever they took us into the meetings, they would just sort of give us the update, “Oh, we think we’ve got the bleed out of control.” But it was always the same as the result of the strokes, they were saying, “Oh, well now it’s affected the thalamus. So, because the thalamus is responsible for our consciousness and alertness and that there’s a possibility he might not wake up. He
may even be blind, and he may even die.” I mean, that was in the first 4 weeks.
Yeah, no, they never spoke about it. Well, the tracheostomy took place on the 30th of April. So right up until there, they never spoke about it. Then there was one week where he was doing much better. He’d come through everything. He didn’t have an infection and he was starting to do better. He was starting to pull on
the pipe, biting down on the tube.
Because when my sister and I witnessed a sedation hold right in the beginning, and he did react, he responded, he nodded his head, he could squeeze your hand with
the right hand. Then, he even lifted both shoulders.
I’ll never forget that. They asked him something, and he squeezed both shoulders, including the left one. So, even though they kept going on about the dense disability on the left side, I truly believe with time and with strength, and if he wasn’t so dehydrated, I believe that some feeling would’ve come back on the left, even if only
partly.
One of the consultants, she said, “Well, we could look at tracheostomy.” Then thankfully, the next consultant that came on was the first sort of positive one that I had experienced. He said, “What do you think?” I said, “Well, it’s obvious. Look, what more does he have to do? He is pulling at the breathing tube/endotracheal tube he’s biting on it.” They actually had to tie his right hand down because he was pulling at it so hard.
Also, they kept him on sedation for so long. It may have been low, but he was always sort
of sedated. Then they started dropping it, and then that’s when he started pulling at it. So I saw, “Oh no, they’ve put sedation up again.” Now, I understand that they have to do that for safety reasons, but that also frustrated me a bit. I’m like, “You’re just putting him backwards.” Because that was before they’d made a decision, you see? So once this consultant came in and said, “Actually, what do you think?” I said, “Well, it’s obvious he wants it out, so get it out.” He said, “Yeah.” Then
at least we knew where we were going, but not to just sedate him again.
Patrik: Yeah. So, if you hadn’t done sort of your own research about a tracheostomy, do you think that would’ve happened?
Donne: Oh, no, definitely not. I mean, that’s where really you
and your team were a lifesaver, because it was at that stage, it was mid-April, I think, when my husband actually found your site, so did I, at the same time.
Patrik: Mid-April. Mid-April then.
Donne: No, if I know about that, I would’ve thought, I would’ve
thought, “Oh, I think it’s good.” But I wouldn’t have had that knowledge, so I wouldn’t have had the knowledge and then the confidence to say, you know?
Patrik: The doctors that didn’t feel the need to say, “Look, tracheostomy could buy your dad at least some time,” they didn’t see the need for that. That would’ve potentially stopped treatment there and then.
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Donne: Well, exactly. I
mean, as I said, all the meetings, I mean, I would say the first six weeks was by far the worst. I mean, well, my dad could have gone any day. He was really, really bad. That’s why I say that was really such a witness of healing. But there was a lot of people praying for him. But they never pushed for anything positive. There wasn’t one meeting that was positive. My mom and sister were in floods of tears. But I sat there and I just thought, “But you’re saying this and you’re saying that.” Even a
simple thing like, they kept saying, “He’s not waking up.” Okay, now I didn’t know anything about this. So yes, then thank you to you and your team and my own research and I went and looked. And I read, actually my dad had seven of the eight reasons that delay waking up, he had all of them. He’s older, he’s had a brain
injury, he’s had strokes. He’s being sedated. He’s had major traumas.
He almost died previously. He’s had so many things, and yet they just kept writing that off.
So in one of the meetings, there was a general meeting that they have every Monday. She
asked me what do I think, and I had to say something. I just said, “Well, you keep saying you’re not seeing enough,” I said, “but you’re not giving him a chance. He’s been through this. He’s been through that. He’s been through that. How would you feel if you’d been through all of that? He’s back’s been opened up three times in two weeks.” There were so many things, but every meeting they just go, “Oh, well, he is not waking up and we are not seeing enough.” But when you do a sedation hold, he
is responding. It might be little, but he is actually responding. Look what happened. They gave him more time, and then he did. He did start waking up. He was more alert.
Then he then opened his eyes. He was looking around.
At first, it was glazed and just staring, and he wasn’t tracking. But then he
was tracking, and then he was looking at you. Later on, so much so that he was even watching the iPad on certain days. Other days, he wouldn’t. He’d be sleeping or he would be staring, but there were days where he was very alert.
But yes, it was clear that they had an agenda because it was always pushed in that direction. If I said, “Well, what about this?” They would say, “Oh, well, that’s only
happened once or that’s not…” They would just come with a negative word in. I was very happy that I got to speak to a neurologist sort of in the beginning, just before the tracheostomy. He said to me, “No. Neurologically, it’s very difficult to say. The brain is apparently the one organ that you can’t control. You can never really say what’s going to happen.”
Patrik:
Very much so.
Donne: Yeah. Because he said, “Yes, the thalamus has been affected, but we don’t know to what degree, because it’s responsible for a whole lot of different things and senses and all the rest. You don’t know what the outcome is, but then you also don’t know how the rest of the brain is going to compensate.” So he says, “It’s only time. Only time is going to
tell you.” But you see, they don’t want to give you that time.
Patrik: They don’t want to give you that time. Absolutely not.
After they’ve done the tracheostomy, tracheostomy really should be done to wean someone off a ventilator, which from memory, your dad did. Then, they wanted to decannulate him. Can you talk about that?
Donne: Yeah. So, his grace period was really the
month of May, really, or the first half of May. He was as strong as anything. He was doing great.
Tracheostomy, apparently, it was one of the best, the neatest procedures. He responded so well straight afterwards. All the little tests that they do, nod and stick his tongue out, squeeze your hand, all of that. He did all of that. Even I came a bit later, but he apparently said, “Hi, Michael,” to my
sister. He said, “Morning, love” to my mother. He greeted the nurse. He knew where he was. He knew he was in your hospital, but not sure which one. I mean, for me, I was just jumping up and down. I was so elated by this. Then unfortunately, it went down again. The blood pressure kept dipping.
That was another thing. They did a scan of the heart. Going back, that’s another thing they did. Straight after the bleed, the blood clots on the ulcer in the stomach. There was something else that was wrong, and they were meant to do a trans ECG (Electrocardiography). Now, they spoke about that on the 26th of March, and they only did it on the 10th of April. I kept saying, “Why aren’t you doing it? Why aren’t you doing it?” They said, “Oh, he’s not stable.” I said, “Yeah, he wasn’t stable, but that was only for 5 days. He’s stable now.” They
didn’t like that questioning. Eventually they did it and found that he had endocarditis. So, they left him with that for ages.
So after the tracheostomy, unfortunately, that’s when he just started getting quite a few infections. But once again, they didn’t manage it properly because the infections twice were in the catheter line. Now, once again, I don’t quite understand why they kept putting the catheter in. If they kept saying he’s not producing, why did they put a catheter in?
Patrik: Doesn’t quite make sense, because they could
have just on a bladder scan to see whether catheter is necessary. They could have checked.
Donne: Yeah. So he was on dialysis from the beginning, and then they’d give him a filter break now and then. But in the beginning, he was producing 20, 25 mls. At one stage he produced 200 mls. He actually even produced 500 mls, but it wasn’t draining. But now looking at it, it could have been partly because of the dehydration?
Patrik: They were probably removing a lot of fluids through the dialysis?
Donne: Yeah, so after the tracheostomy, he had diarrhea. That’s the other thing. He had diarrhea that just went on and on for two weeks. I said, “Well, what are you doing about it? Surely there’s something you can do to help the diarrhea.” All they could say was,
“Oh, you don’t want it to go the other way.”
But I’m thinking, “Well, for me, the damage just standing out watching him, he’s just getting weaker and weaker,” Then, he had an infection, Pseudomonas. Well, he had that infection. Then, it was 10, 11 days, and he got another one. They put him on an antibiotics, and I remember walking in and the nurse said, “Oh, yeah, well, he’s just stopped his antibiotics.” I said, “What?” I
said, “But you’ve just started it.” It was about 3 days and they stopped it.
Patrik: Right.
Donne: I know they didn’t like that questioning either, but then look what happened? Barely just over a week, it was back again. Then again, at that stage, he was not
good again. So that was going towards the end of May.
Very, very weak. So all he’s responding and reacting, because at one stage, his right hand was so busy, they brought him stuff to feel and hold. They had him out in the chair. They had him sitting in the wheelchair. Look, my dad was sleeping a lot of the time, but for me, that’s part of healing. So, at least he is making baby steps forward. But
isn’t it interesting? Isn’t it interesting in that time that he was doing so well, we never saw consultants?
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Patrik: They only saw you when they wanted to give you bad news.
Donne: Yeah.
You’d love to find them and say, “Hey, and now, and now.
Look, now.” I mean, we were told by the one consultant in the meeting before the tracheostomy, “Basically his options are extubation, but he won’t
survive that. Tracheostomy, you could try, but it’ll more than likely fail.” So both of them, he’d have to just make him comfortable. Then the third option was just make him comfortable. So basically all he wanted to do was make him comfortable. My husband said to him, “Well, it’s a no-brainer. Give him a tracheostomy.” Then no one, we just didn’t see consultant.
Patrik: Maybe
just for our listeners, “make him comfortable,” it’s euphemism for let him die. That’s the euphemism for that.
Donne: Yes. Yes. Unfortunately. Horrifically really. But they were nowhere to be seen. I did want to purposely go and seek someone out and say, “Okay, so can we have a meeting now?” Because they were always like, “Oh, we need to meet. When can we meet? We need
to catch up.” I really wanted to say, “Okay. And now? Now, what do we talk about?” But I mean, that was so obvious. But yes, he was very weak with these infections.
Then, the next thing just had a meeting saying that they want to do decannulation. He was doing well. So my dad’s lungs were always very strong. I had never had a problem there. He was always on 21% oxygen. It was just slight support. He
had actually weaned off. He’d weaned off twice, done really well. At the end, he was only on humidified thing.
Patrik: On a tracheostomy mask or on a T-piece.
Donne: Yeah, that’s what he was on. That’s it. So yeah, that’s area he was very
good.
Patrik: That’s after they told you it would never work?
Donne: Oh yeah, many times. I wonder what they would’ve done if I just said to their face, “You said this to me. You said that it wouldn’t…” But they probably would say because they are careful
with their words. They say, “More than likely. Probably.” They choose their words, the same as when she said to me that she thinks he’s dying at the end. She thinks. That just was alarm bells for me, because surely, surely you as a professional know, you know when a patient is hitting that.
Patrik: Yeah. Yeah.
Donne: Yeah. So he had the two infections, one after the other, and he was very weak. Then they just said, “Oh, actually, they’re thinking of taking the tracheostomy out.” I said, “Well, I know he’s weaned off, so that’s really good.
But I know that he’s still having the cuff up. The cuff is inflated now and then, not often, but now
and then. I know the blood pressure is up and down, up and down. Yes, he wasn’t getting much support. The noradrenaline was, I think, on about 4 or 5, but still, he still needed support.” Then that’s when I phoned you and I questioned you frantically like I just have this feeling he’s not ready. Then, you gave me the checks and said, “Oh, they’re still suctioning him,” and they were. Not too often, but they were still suctioning him. So, he had a few things. He wasn’t stable.
I felt like if they gave him another maybe week or two, I think he would’ve been stable. But at that stage, no. He was very, very weak. Now, they want to just take it out. But you see, I didn’t know the other meetings that were going on behind my back that they were talking about basically that’s your option of letting him go. If they do decannulation and then he doesn’t survive, then that’s a way to do that.
But I wasn’t involved in those talks. So, when the doctor said to me, “They want to do it,” I said, “But he’s not strong enough.” He just said, “Oh, no, no. This is the best he’ll ever be because he won’t ever be any stronger than he is now. He’ll only get weaker.” Well, you’re only going to get weaker if people aren’t going to do anything to help you get stronger.
Patrik:
Yeah. You very much felt at that stage that they’ve frightened you off, or they’ve frightened him off?
Donne: Oh, completely. I mean, they had really really from the beginning, but definitely at that stage. I mean, the doctor had said, “I think we’ve already established that your dad won’t survive outside of ICU.”
Patrik: Wow.
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Donne: Well, they’d never spoken about options. They’d never spoken about rehabilitation, even when he had the tracheostomy and was sitting in his wheelchair. They had a rehabilitation sign up that they’d made, but I did feel like that was just done for the sake of doing it. It’s little things you pick up. They used to have the brace on the foot to keep the leg aligned, alignment and
stuff for stroke victims. They stopped doing that after two months.
Patrik: Right. Did they give an explanation for that?
Donne: No. No, I didn’t actually ask that, but I picked that up. So, they wanted to do this decannulation. I didn’t feel very happy about it.
Then he just said, “Well, if he can’t survive that, then there’s no point in sort of reintubating because then he won’t survive.” But my point was like, I’m not going to stand around and just watch while they do that and then my dad goes. I’m just not prepared to do that.
So, the morning, he dipped again. He got a fever and he was shaking and stuff and I’m not sure what it was. So they couldn’t do it. But that’s after I’d spoken to you, and I went in and I just said, “I’m sorry, I can’t agree to this.” I said, “He’s not strong enough. He’s not stable enough. If you remove that now, he’s going to die.” The doctor said to me, “Well, I thought we’ve established that. I thought we’ve
established that he is not going to survive outside of ICU.” But I mean, are they not supposed to do everything they can to help somebody? Not the other way around?
Patrik: You would think that especially if it’s your or your patient’s wish. Absolutely, it’s disgraceful.
Donne: So, because I’d gone in and said, I said… But then they lied to me again. They said, “Oh, he’s not stable. They said they are. They’ve checked the vitals, and right now it’s the best that he’ll ever be.” Bear in mind, he’s just had two infections. Then he’s had another dip. Actually after I’d had the meeting, this is when he dipped and he said, “No, it’s the best he will be.” I said, “No, he is not. His blood pressure’s been up and down all
weekend.” He said, “No, it’s been stable for the last two days.” I had been there all weekend, so I saw this. I asked the nurses, they said, “No, he needed support in the night.” It was still on in the day. They were switching it on and off. So, they were lying to me to obviously get me to be on side, to think, “Okay, he’s fine.” Meanwhile, he’s not fine.
So, if I hadn’t done that, and if I hadn’t
had you supporting me and giving me the knowledge and I hadn’t gone in that day, I do believe my dad would’ve gone that day.
Patrik: Wow.
Donne: So that was the 4th of June. Then on Saturday, 4th of June this Saturday, had another meeting about basically
there’s no future for him. That kept going on about the dense disability on the left, the dense disability, and I thought, “Wow, then why don’t they just get rid of the whole disabled population then? How many people out there are disabled and they’ve had stress?
Patrik: Yep, absolutely.
Donne: Because all they can say is, “What quality of life will he have?”
Patrik: Yeah. Most of those
people that you’re describing, they actually do want to live. Who are the doctors to make that decision? When someone is incapacitated, what is quality of life? What is it? It’s just the perception.
Donne: Yeah. Then they kept saying, my worst was… Oh, so my dad’s name is Les. “We have to really prioritize Les here and what he would want.”
Who actually wants to die? I’d actually asked him twice because apparently the whole reason my mother and sister wanted to do the tracheostomy was not for hope, “Do I keep him alive?” Their reason was to try and involve him in the decision. But I had asked him, I said, “Do you still want to live?” He’d said yes. But the hard part was at times it was like he was just saying yes to most things, but not always.
On the Saturday before he died, they put the speaking valve on. Two times you didn’t get anything. It was grumbling. It was just like noise, like murmuring. Then, the last time she tried, I said, “Dad, how do you feel?” I didn’t give him an option. I didn’t say, “Do you feel good or bad?” I said, “How do you feel? How are you feeling inside?” He grumbled, “Fine. Fine.”
So, if they’d given him a few more days, I bet you anything, if you had asked him, he probably would’ve said, “I’m fine. No.” Same as in the medical notes. If you look, they’re gearing everything towards what they want to say, the speech and language, asked questions and said, “Oh, it’s only one worded answers and sorry, single commands. When asked if he’s frustrated, he says, “Yes.”” Well, did you ask if he is not frustrated? Did you ask, is he happy? But they’ve only
put in there frustrated.
Patrik: Did you ask him that? Even though he’s frustrated, he wants to live.
Donne: Yeah, exactly. Yeah. Yeah, it’s awful, really.
Patrik: Awful. Unfortunately, this is not the first time that I’ve seen that the NHS in the U.K. is absolutely ruthless when it comes to these situations.
What we’ve seen over the years, they’ve killed children like Alfie Evans or Charlie Gard and others, why would they stop at an adult if they’re so ruthlessly killing children who could have been flown
out to other countries for alternative treatment? They’re not going to stop at a 75-year-old man.
I remember working with you, Donne. I mean, they were almost creating this narrative right from the start. “Well, he’s going to die. He’s going to die,” and never gave him a real chance. Never.
Donne: No. I mean, well, at the end of, just before the tracheostomy, so I think Mid-April. I mean, that meeting was brutal. My mom and sister were in bits. I wasn’t, because with everything in my being, I could feel this is all nonsense. There’s no hope. He could end up in a home, but the disabilities he’s left with, we can’t even tell you how many he’d have. He’s not a candidate for future dialysis. Yes, the biggest thing we didn’t know is whether
you’d ever get control of the sepsis completely. If it had attached to the screws in the remaining screws, you’d still deal with it. But like you said, it would show up in the blood work, and it hadn’t. So, they kept using that line, but it hadn’t.
The infections they got always seemed to be from the catheter line. So then why didn’t they do something sooner and not have the catheter? So I do believe that they could have controlled that a lot better. But I mean, that meeting was dire. Another meeting I had, I just had a consultant say to me, “Oh, well, I just think you’ve just got to be brave now and get ready to give your dad a good death.” That’s what he said to
me.
Patrik: Terrible.
Donne: Yeah.
Patrik: What about trying a better life instead of a good death?
Donne: Yeah. Well, the second last meeting, I said, actually, that was the first time I asked. This was now right at the end after the two infections and he’d been so weak. That’s because I was asking for a second opinion, and I do believe that this rattled them because they rarely didn’t like that it was coming from you. Because the last consultant had said to me, “Look, I can get you a
second opinion within another ICU in the NHS.” I said, “No, I’ll go with the person I’ve found, thank you.” She said, “Well, I don’t know if we can do that. We don’t do that. I haven’t heard of that.” I said, “Yeah, they do. They do.” She did not like it.
She said, “Well, I’ll have to find out how this works because I’ve never heard of this before.” Then she said, “Well, that’s where she informed
me.”
Apparently my mother didn’t want a second opinion, which I think who would not want a second opinion when it’s someone you love? She said, “There’s many specialists involved in your dad’s case, the renal specialist, the strokes specialist.” I said, “Yeah, okay. I said, I still want my second opinion. It’s just a second opinion.” See, why is she getting so rattled?
Patrik: What is it that other people can’t see?
Donne: Yeah. That was Tuesday, he went Wednesday. She said to me, “How long will it take?” I said, “About a week or maybe two.” She said, “Well, I’m not prepared to give it that time.” I did pick up on that. I should have said,
“What are you trying to say?” But that was right at the end of the meeting. But she did, and the other consultant just informed me that my mother was relieved to know that we don’t make the decision, they make the decision about my dad. I said, “What? So even though I’m power of attorney,” because we all are, so I said, “so that doesn’t matter? That doesn’t count for anything?” She said, “It does.” He said, “We’d like to have you involved, but no, we make the decision.”
Patrik: We make the decision who lives and dies.
Donne: Yeah. But who made them God?
Patrik: Yeah. Yep.
Donne: How would they feel if that was their mother or father?
Patrik: Absolutely. Absolutely.
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Donne: I mean, I said to the second last consultant, because they keep wanting you to tell them what the future is. Well, how does this future look and what’s going to happen? I said, “I can’t tell you. I don’t have a crystal ball.” I said, “All I’m doing is taking it day by day and supporting my dad.” I said, “He’s still fighting. While he’s fighting, I will fight for him.” I said, “Anybody else would never have got through what he got through.” I
said, “He’s got through so much.” It’s like, how dare they just now decide that’s it now? “When it’s his time and he’s ready to go, then he will go. But until then, you should be doing everything you can for him.”
I said, “Isn’t three months or six months better than nothing?” I see in the report, this is the beauty of having the medical records, you see what they write down. He said, “Donne mention
it.” Because that’s another thing also for listeners, they also only put in those reports what they want. So I’ve said positive things before, and they didn’t put it in. They put the negative things.
Then, they actually mentioned, “Oh, Donne asked, ‘Isn’t three months of life better?'” They said, “Well, taking into consideration basically all the negative things and his future and the quality of
life he’ll have” “No.” So they decided no.
Patrik: Yeah. Donne, with the work that we are doing worldwide, the U.K. is the worst. The U.K. is the worst. I believe the NHS has a lot to answer to, a lot. It’s not everyone like yourself that questions, but you need to question everything. These are life or death situations, and you got to question everything.
Donne: Yeah, I think it is hard for most people. I mean, I know my mom is just naturally like that, that she would never question a doctor. But my generation depends how you were raised, but I was also raised, “No. You respect teachers, ministers, doctors. You don’t ever question. You do what they tell you.” But unfortunately or fortunately, I’ve got more of a strong will.
Then, I’ve had experience with my son. He was in hospital at 20 months, and there the doctors weren’t doing much either. So I already had started then questioning. “What are you doing? But you haven’t done anything” or, “That’s not the actual problem. Why aren’t you…” So, I had already had a little bit of an experience. But yes, walking in there, I just couldn’t believe what I was seeing and hearing. But that’s where your site, honestly, it is a
Godsent and also just to help your sanity, you’re not going to say this-
Patrik: Yes. What you saw and what they were telling you just didn’t match up.
Donne: Yeah. Yeah. Also, you kept saying, “Get the medical records. Get the medical records.” But I didn’t
honestly didn’t know how I was going to do it. Because when I just asked simple questions like, “What is his hemoglobin level?” I mean, trying to get arterial blood gas from them, that was just like pulling teeth.
Patrik: Pulling teeth.
Donne: They, “Mm-mm.” They’re just, “Why? Oh, it’s fine. It’s fine.
Everything was… Yeah, it’s fine. It’s normal. It’s fine.” Some of the nurses would get really off
with me, and I thought, “But why? It’s my dad. Besides, I know sometimes that’s not enough. I’m power of attorney, so why can’t you tell me?” My husband would go crazy. He said, “What? Do they not know how to read what’s on the screen? Because if they don’t, they really shouldn’t be there.”
Patrik: I’m ashamed of my nurse colleagues that they would do something like that. It’s
terrible. Absolutely terrible.
Donne: But you can see the ones that were really kind and nice, you could see they were a bit conflicted because they sort of want to tell you, but you can see they can’t. Or they’ll start telling you, and then they go, “Oh, but you can talk to the doctor.” The other ones just don’t. They just go, “You need to speak to the doctor.” I’m like, “But
you’re right in front of me.”
Patrik: That’s right.
Donne: The computer’s right there.
Patrik: Yeah. What is it that you can’t know?
Donne: Yeah.
Patrik: It’s terrible. What is it that can’t be transparent about healthcare?
That’s the world we’re living in now. Everything is at the fingertip of pushing a
button, and yet you can’t see the medical notes of your loved one. It’s just wrong.
Donne: Then, unfortunately, there was confusion on my side with I didn’t know I was power of attorney for my dad, and so then that delayed everything.
Patrik:
Wow.
Donne: So, when I finally got those papers, then I could push.
Patrik: Right. Right.
Donne: But yeah, it’s not that easy. For anyone,
if they are in the U.K., go to PALS, (Public Assistant Alliance Service), so they’re within the hospital. I think most hospitals have them. They were incredible. They were really helpful. I went straight to her and I just spoke to her. I went up to ICU. That’s barely 3-4 minutes, and she’d already spoken to the doctor for me. So, if you’re struggling to get them, go to PALS and ask, “How do I get the medical records?” And they can at least assist you.
Patrik: Right. Well, Donne, thank you so much for sharing all of this with our listeners. It’s just another, unfortunately, another stark warning that especially in the NHS, in ICU in particular, you have to question everything right from the start. Because the NHS has given the doctors so much power that, from what I understand, is also backed up by the courts, the court cases that we’ve seen in recent
years with, again, Alfie Evans, Charlie Gard, they all ended up in favor of the hospitals. Is that an element of population control? We have to ask those. We have to ask those hard questions. We have to ask those difficult and also very confrontational questions. Why can’t people have a good go at life even when it’s difficult?
Donne: Yeah. What gives them the right to decide
that no, you can’t? Who decides that, yes, I know we have an ageing population that is making difficult, but the thing is, who are you to cut someone’s out? I mean, 75, my dad could have lived till he was 90.
Patrik: Yeah, absolutely.
Donne: I mean, not
after what had happened, but in general, you don’t know.
Patrik: You don’t know. You don’t know.
Donne: But yes, I think you had said at one stage, ask if he has an, is it an acute care plan?
Patrik: An advanced care plan.
Donne: Advanced. I think I was going to, and then something had happened.
But yes, I think definitely keep asking that. Keep asking about the DNR (Do Not Resuscitate), keep asking about
end-of-life care or palliative care, all of that, because you don’t know what they’ve now gone and decided.
Patrik: No, you don’t. That’s why you need access to the medical records as soon as possible. An advanced care plan is helpful. For anyone watching this or listening to it, we only recommend an advanced care plan in advance so that the doctors know what you want if you
are ever in a situation like that.
Whether you want full treatment or you don’t, then there’s no grey area. Then those conversations around, “Well, we don’t think your dad will have any quality of life. We should just stop everything” won’t happen in the first place.
It’s documented.
Donne: Yes. Yeah, as you know, my situation was unfortunately very complicated, but if I didn’t have that, I would’ve definitely gone that route. I mean, on the last day, on the Tuesday, he waved, and he gave a thumbs up to my son. He was holding his head up and looking around and was amazing. Then on the Wednesday, he had taken a dip, but as you had said when I spoke to you, it was more
what had they not done. They did nothing. They didn’t give him blood pressure support. I’m not sure if they gave him oxygen.
They didn’t give him an anticoagulant. They didn’t give anything. No support.
Patrik: Yeah, you could argue that’s medical negligence. You could
argue.
Donne: Yeah. So later then, he wasn’t in a good way, and then they injected him. So yeah.
Patrik: It’s just very, very unfortunate. But Donne, I really appreciate that you’re also willing to share this, what I believe has been, a really traumatic last few
months for you and for your family to share that here so openly and also share a word of warning, again, especially in the U.K. What we’ve seen in the last few years, it’s just horrible. It’s getting worse, not better.
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Donne:
Yeah, no.
Patrik: It’s getting worse, not better.
Donne: It’s horrific. I still can’t actually comprehend it. It’ll be a long time before I do. But I’m just grateful that I’ve had the compassion and the professionalism of your team and yourself. I’m so
grateful for finding you.
Because I would’ve had to try and navigate that alone with my husband and us together trying to research. The thing with that is, you are not a doctor. So as much as you can do Google search, you can’t go with that because you don’t have the expertise. So it was really like having, as I said to you, it was like having a friend hold your hand and lead you through it because
that is what you did. I’m just really grateful for that. So thank you.
I just like to say to people out there, as much as it is hard at times, don’t be scared to question them. Don’t be scared. As you say, rattle their feathers because that’s your loved one lying there. As nicey-nicey as that all being, they’re not nice. The line they give, which I really… “We care. We’re doing everything that we
can.” No, you’re not.
Patrik: No, you’re not. You care about your ICU beds, how many patients are in there, that’s what you care about.
Donne: No, it’s true. Unfortunately.
Patrik: It’s very unfortunate. But we can only do our part here, Donne, by highlighting what’s going on in the real world. We can only do our part, and we can only change the things one client at the time. But at least people can listen to this and form their own opinion, of course. But that’s unfortunately the reality of what the healthcare system almost all around the world is, the mess the healthcare system is in.
Donne: Mm-hmm. Yeah.
Patrik: It needs to change. I wish that more people, health professionals in particular, but also families speak up, because they all see it, but they’re too scared to speak up, I believe. Families are scared to speak up too. I don’t know.
Donne: I would love to speak to the nurse I had on the last day, because he was the one I’d mentioned to you. He was so good, so attentive and caring.
So that’s actually what really, really hurt me, was that that was the person in the end who ended up administering. But I know that that was his job. I’m sure
you can probably relate to that, the things that you’ve had to do or whatever. But I wish I could say to him, “Do you not see all of this?”
Patrik: Donne, it comes with time. It comes with time. I worked in ICU for 20 years. It’s not that I saw what was going on from Day 1. It comes with time. In the first few years, all you do is you learn. You don’t learn all the clinical
things. You don’t understand the politics because you’re just learning the clinical things. Once you’ve learned the clinical things, then you do management, and then you dig a lot deeper. Then you work in different ICUs, then you see, “Oh, there’s a difference how they do things here and how do they do things there. There is a difference in attitude.” Because I also work in different countries. There’s differences in different countries with the approaches. You see it over time. But I also think
in the last 10 to 15 years, things have gotten worse. Things have gotten worse, where I thought to myself, “Hang on a second. Are we potentially euthanizing people here?”
Then, you start to question. Again, it comes with time, it comes with maturity. When you’re young, it’s all adrenaline rush. It comes with time.
Donne: But how much do the nurses actually know? Because I mean, my husband said they would be briefed.
Patrik: I think they know everything. I think a lot of it also comes down about your personal values, about your, “Do you believe in God? Do you believe in a higher authority? Are you an atheist?” Whatever floats your boat. From my
point of view, no one has the right to take life away, but God, I believe. That’s why people should go into the healthcare profession, whether it’s doctors, nurses, to help people. By making statements such as, “Well, that person won’t have any quality of life, therefore we’ll just stop everything.” That, in my mind, defeats the purpose.
If someone has an advanced care plan and says, “Hey, I don’t
want to go through all of this,” that’s great. At least you know where you stand. But who’s to say, “What is quality of life?” I mean, we talked about here in Australia, we’re doing Intensive Care at Home. Intensive Care at Home has been happening in Europe, in Germany in
particular for the last 25 years. There’s other options that are not happening in the U.K. that are not even on the table. So you have to look outside of your ICU as well. “Okay, what else can we do? Can we do palliative care at home? What else can we do?” I think you mentioned earlier something like, get ready to provide a good death for your dad, or something like that. Something along those lines.
Donne: Yeah. I said, “I think we need to be brave now and just need him.”
Patrik: Right. Right. I also believe, from memory, there was ample opportunity to ask your dad himself, and that conversation between the doctors and your dad never took place because they were cowards.
Donne: Yeah. The thing is, I’d asked him twice. I said, “Has anyone actually asked him that?” I asked the one consultant, and he said, “Yes, but no, we didn’t get an answer.” Obviously, you can get an answer that he’s frustrated.
Patrik: That doesn’t mean he wants to die.
Donne: Yes. So, yeah.
Patrik: Okay. Well, Donne, again, thank you so much for sharing your dad’s story and what you and your family have been through in the last few months so openly here.
I do want to wrap this up now.
We’re coming close to the hour mark. I think we’re already an hour mark. Thanks for everyone listening to this. Any final words, Donne, before we close this off?
Donne: Just to say to people there, go with your gut. Listen to that little voice. Don’t be afraid. Just focus on your relative that’s in there. If you can, be there as much as you can. I unfortunately couldn’t be
there that often. I think especially at night as well, you don’t know what they’re doing at night or not doing. But then just to thank you, Patrik, honestly, from the bottom of my heart, thank you so much. Thank your team.
Patrik: Yeah, no. Thank you to my team. Absolutely. I’m not a one person show. Absolutely not. Thank you to my team as well.
Donne: Yeah. Good luck and carry on doing the incredible job that you are doing.
Patrik: Thank you. Thank you. Thanks again.
Donne: Okay.
Patrik: If you need help, if you have a loved one in intensive care, go to intensivecarehotline.com. Check out our website. You can also become a member of our membership for families of critically ill patients in
intensive care.
I do one-on-one consulting over the phone, Zoom, Skype, WhatsApp, whichever medium works best for you. We do medical record
reviews in real time or after intensive care.
I also do a weekly YouTube live. If you like my video, subscribe to my YouTube channel, click the like button, click the notification bell, share the video with your friends and families, this one in particular, so that people understand what’s happening in the real world.
Thank you so much for watching and thanks again, Donne.
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Donne: Okay.
Patrik: Take care for now. Thank you.
Donne: Bye-bye.
Patrik: Bye.
Kind regards,
