Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where
we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another frequently asked question from our readers and the questions was
Can a tracheostomy be reversed?
You can check out last week’s question by clicking on the link here.
In this week’s part 1 episode of “YOUR QUESTIONS ANSWERED“, I want to answer the questions from one my
clients RICHARD as part of my 1:1 consulting and advocacy service!
Richard’s mother suffered from a fractured bone due to a fall. His mother was then transferred to the ICU due to cardiac arrest and had a
tracheostomy during her stay at the ICU.
The ICU
team is telling me and my mom to stop her medical treatment. Can they end her life without my consent?
Richard: Hello, hi Richard speaking. Is this Patrik?
Patrik: It is. How are you?
Richard: Hello. Is that Patrik?
Patrik: It is Patrik from IntensiveCareHotline.
Richard: From Intensive Care Hotline?
Patrik: Yes.
Richard: Oh thank you very much for calling back.
Patrik: You’re very welcome.
Richard: Thank you so much. I really appreciate your time and I’ll keep it as short as I can. I don’t know what time scale we got here.
But I’ve been reading a lot on your website. It’s
actually wonderful. Thank you so very much for the breadth of information and knowledge and time to me navigate a sort of which I know extremely little about. But if I can just give you extremely brief details then maybe, just my key point that I’m struggling with at the moment. That would be really most appreciated.
Our mother is in Intensive Care and she’s been there for now about twenty-nine days. Now it started when she had a fall and she
went to accident emergency to be checked up, purely for bones. Like had she broken a bone? And to cut the story short, she hadn’t broken a bone. Sorry can you hear me?
Patrik: I can hear you.
Richard: Sorry, I’m on a mobile. So she went into accident emergency and while she was in accident emergency, she did have a cardiac arrest.
Patrik: Right.
Richard: So that was the first time ever in her life. So she did have that. And then
they applied CPR (Cardio-Pulmonary Resuscitation) and they did manage to, to put it in layman’s term, to kickstart her heart. But they said it took about four or five cycles to do that. Now, I’m not entirely sure but I assume that means five attempts. Does that make sense how I’m explaining it in simple terms?
Patrik: Yeah… Yeah. Absolutely.
Richard: Okay.
So now this is kind of the start of a journey. She is somebody who’s 85, 86 and she does have a history of COPD which I understand as a kind of lung disease and it affects the bleeding. And before, she had been assisted by a nebulizer when she needed it. It was
something to help her to ease her airways when she got a flare or an exertion of exercise, she would then need an assistance with that, help her breathe more easily. And she was in a nursing home.
Then from there, having done the CPR, she went up to Intensive Care Unit. I believe she was about twenty-four hours on the trolley which didn’t do her any favours. But she then did get up to Intensive Care Unit and she was in a coma where they
induced it through a medical team, sedation and all that side.
And then she was given intubation, I think where the tube goes down the neck?
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Patrik: Yep. Yep.
Richard: To help her with the breathing. That’s more or less what I came aboard because I was there a way, before I came in a rush to see her. The very next day I heard about it. This was now in Ireland and I was based in England so there was obviously a small gap right there.
To cut our story short, they then gave
her what they called “Aggressive Therapy” which I think was a combination of sedation and pain relief. I’m not entirely sure but I would imagine it would be therapy plus the various drugs to help her. She had an infection so she’d had antibiotics, insulin plus a propofol. It’s kind of a
sedative I think.
Patrik: Propofol.
Richard: Exactly. She had that and that was going along for approximately, I think, about ten days. And they were getting
deeply worried about her from that day, (ten) in terms of her coming back around. They reduced sedation et cetera and hoping that she would be able to breathe more easily et cetera et cetera. Then they go to that day 14, 15 and they were pushing really hard the end of life. And what they could do with her. Just listening to what they were saying. Not too sure what to make of all this.
They then said, at this point, they wished to do a tracheostomy. So about day 16 they said if I would give consent, I’m the next of kin. The tracheotomy, they said, could assist her with weaning. They were having trouble with weaning, to get her off. So they moved on to the tracheotomy. So she’s now from that point, give or take, been about ten
days since then.
It’s been about nine or ten days now and in that period they managed to get her out onto a chair, breathing a small amount on her own, like about twenty minutes, half an hour session. But not very often. And she was struggling but did manage it at least twice in, let’s say, the last week or so. I think, they tried a bit too hard, like a little bit too hard. But it was the right amount. And she could manage a second session of
the day.
So then she had a day where she seemed really worn out and couldn’t cope with more being taken off the ventilator. My main question is me telling, if there’s more that I need to ask. If you
could advise me that would be wonderful. They now more just saying, “end of story. We think enough is enough. It’s time to turn everything off.” And my main question is, I don’t know that much about time scales. Do you understand that though she’s obviously taken a weak heart, I know it stands, obviously, with the COPD and the lung function is a worry for them.
The main thing, I think, that they’re worried about is the exhaling and though the CO2 levels weren’t, I presumed she was having a build-up of CO2 and she was well enough. I think that was the gist of where they were at. So the end of the story is that they are now suddenly saying that they only just told me today that they’ll give me a day
total, maximum, to make my choices or feelings et cetera. But she’s had these ten days, it’s now game over, it’s time for end of life, to turn the machine off, and then, I think, what’s taken them, guessing over here, palliative care of some kind. I’m not quite sure though.
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Patrik: And can I just ask, are they your words or are they their words? In terms of end of life care, in terms of, you know mentioned quote un quote game over. Are they your words or are they words you’ve picked up through them?
Richard: The game over is my words. I’m sorry for the critical
error. But they used the words, “end of life” and they’re basically saying that I need to come to terms with the loss of my mum should she die unexpectedly. And it comes all through to me, a very strong message that she’s had her days, her quality of life, which I do respect, but just to be clear, she’s been very clear as far as both before and during, that she wishes to live. So there’s no question about that.
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Patrik: And why do you think it’s important you do something now? Have they been giving you a timeline, sort of
why it’s important? You know you mentioned in your voice message it’s urgent. Why are you dealing with timelines? Are you feeling under pressure?
Richard: I’m feeling under extreme pressure. I mean today I really felt bullied.
Patrik: Okay. Okay.
Richard: It’s like I need to make a
decision tonight. That I was buying into agreeing to palliative career tomorrow and they turn the machine (ventilator) off. It’s a very strong pressure that I must make up my mind. I’m trying to work it in terms of a benchmark.
Patrik: Yeah, sure sure. So you’re saying your mother was in Ireland, is that correct?
Richard: It’s correct
yes.
Patrik: Right okay. So you’re not in Ireland obviously? They’re putting pressure on you and you’re not there. You can’t see your mother; you can’t talk to her. So that’s just for me to obviously putting a point.
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Richard: Can I just retrace? Sorry, I’m actually still in Ireland. I am in Ireland and go to see her during the daytime. I’m on an English mobile.
Patrik: So you do see your mum every day?
Richard: No. I do see her actually every day. But the communication has been very erratic in terms of one day.
Patrik: Okay. Let me ask you a few more questions. What outcomes do you want in a dream scenario? What’s your best case scenario? What does it look
like?
Richard: That’s a very good question and I’m glad you’re asking that because I’ve never had that. Today they did say something about it, “where do you see your mum in a month’s time?” But in terms of the question you just asked me, I can’t be sure, from one day to the next, whether she’s going to recover, whether it’s absolutely her baseline is what it is and she’s not going to change. I can’t be sure. But I had a
feeling, maybe it’s me being wrong about this and it’s a perception, but she did have two very bad nights’ sleep, just literally last night and the night before. And from what they’re telling is the last three days consecutively, they’ve been asking the very dark question, “Do you definitely want to still live?”
Now I don’t know how she’s reacted to that. They’ve done it behind my back without me knowing it. And I can understand that could
have been very stressing for her. Bear in mind, she can’t talk because the tracheotomy tube. Something I else I want to briefly ask you about because they’re saying they can’t put a stitch valve in until she’s completely off the ventilator. And I have a feeling that’s not right.
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Patrik: That’s rubbish.
Richard: That’s what I thought. And I tried
to speak to a speech therapist but they wouldn’t let them anywhere near them. So it’s awful because I can’t access it. But in terms of the question you asked, I’m not sure where I see my mum. One of my worries is that if she didn’t wean off the ventilator, I can see that being a major problem. Is that right?
Patrik: I don’t know yet. I would need to know more about, for example, what does her statistic rates look like? What are her blood gasses look like? I don’t want to get too medical over here but obviously, that’s my specialized knowledge. Without that knowledge, I would need to know what are her ventilator settings
like? I could tell you if you could send me a picture of her ventilator. I could tell you very quickly how far she is. Or how far she is coming off the ventilator. That’s all it would take.
So obviously, this situation is not dissimilar to me. I’m talking to people in similar situations every day of the week. You’re feeling intense pressure. What’s your main support structure? Are you getting any support from number one, any other family
members? Or number two, is there anybody within the ICU team who’s even supporting? Like could it be a social worker or it could be a nurse? What’s the structure you’re operating in at the moment?
Richard: In terms of family, I have an elderly aunt who I’m very blessed who is around. There’s health complications but she’s trying to come in every other day, so she’s been wonderful in trying to help. But she’s on a four wheeler,
walkie thing. She’s doing her best but she has physical difficulties and complications.
Patrik: Please keep to the point because I know we got to move forward. Please speak to the point. You don’t need to elaborate about your auntie. We need to move forward.
Richard: I have one aunt and one cousin who’s come in once or twice. When she can. So two people
total. And they’re not on site, they’re far away. And then in terms of the ward, there are every day, completely different people from the nurse’s point of view. There is a ward assist who I barely speak to. So there’s very little support at all. I’d almost call it zero, it’s not quite zero.
The ward in terms of any intensivist. That doesn’t exist at all. There’s no sense of continuous care or any linking from A to B is virtually non-existent.
From my point of view.
Patrik: Right. Okay. So you’re pretty much feeling like you’re back is against the wall and you’ve got all these people trying to push you into making a decision and in essence, agree to stop life support for your mum and she can die. That’s how you feel, isn’t it?
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Richard: It is very much the way I feel. Exactly.
Patrik: All right, all right.
Richard: And just one small other point just in case it’s important. The specialist team seems to be almost non-existent. And I will give you some specific examples.
They do not have a full-time urologist. I think at the very best there’s a part-time urologist. Their part-time heart specialist has just resigned, so they don’t have any system currently at all. Their geriatric specialist is gone.
Patrik: Where about in Ireland are you?
Richard: The General Hospital. It’s not in Dublin. Where I wish she was in because I
believe they do have some specialists.
Patrik: Right. And it was never point of discussion to send her somewhere where you have specialties available? That was never a point of discussion?
Richard: It was never discussed but it was actually discussed today by me initiating and saying, “if you haven’t got XYZ is it possible to transfer her?” And they might
have said no because it would have required a consultant to support that and he doesn’t support it. I had to step into Jenny because I was worried about her condition and her to transfer like that but still, I would have considered it, knowing she’s been a bit better. Up and down.
Sorry I’m too long to answer. But it’s something that I think is a very relevant question and I don’t understand what it means.
Patrik: Okay. So here is how we work. You know, with everything that you’ve shared, I know I can help you. And I know we can put a stop to all of that. And it’s quite frankly, through my insider knowledge, I would need to know more medical details. That would include, for example, what ventilation settings is she on? And once I’ve got that information I can clearly guide you, in terms of this is what you tell them. This is what type of questions you need
to ask. And then, what also would be very help is to get some blood gas results. And potentially order some chest x-ray results that would be really helpful.
It could be simple in the
beginning to just get a picture of the ventilator and then I could set you up with some questions and you could say to them, “look, this is how far she’s really to be weaned off the ventilator.” And it’s really a matter of asking the right
questions.
Richard: I was wondering about that.
Patrik: Right. Right. And this is the biggest thing is that for families and in this case you don’t know what you don’t know. After twenty years of working in ICU, I can very quickly see what’s happening and also, I think that’s where my real knowledge is coming in. I can guide you in terms of what you need to
ask, in terms of end of life care. Are they breaching their own policies just by asking you those questions? That’s the sort of knowledge I come in with where you can clearly and very quickly push back on them. Just by asking some questions.
Richard: It would be helpful yeah.
Patrik: So, that’s pretty much how it works. What I’m also offering, I would also
be very happy to spend thirty minutes or even more with the doctors on the phone with you. Very happy to do that.
Doesn’t matter to me how you use it, as long as we can get the outcome that you want. Most of the time it’s enough just to set you up with the right questions. That is enough most of the time. But depending on the situation, I’m very happy to talk to the doctors directly with you. Have you had a family meeting? Like where they drag
you into a room and they sat you down? Or has this all been happening informally at the bedside?
Richard: A little bit of both. I’ve had two family meetings where a man would come and talk to us. And I have had two in the corridor kind of brush off, brief conversations. But primarily yes, it’s been sort of family meetings. I had one at three in the morning, horrendous story. That was a force for CPR which I hated. And I had
two others: one this morning and one, I think, the end of the intubation which was approximately ten to twelve days ago. Almost all I’ve had in terms of family meetings.
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Patrik: Right.
Richard: Two quick things to answer in terms of you what you say.
Just to touch base with you. The ABG (Arterial Blood Gas) site and the chest x-ray there’s no question I can do without. I’m not at all aware of how I would access those in order to get it.
Patrik: Oh you could access them. Just ask. You see, the first advice that I give families is don’t over complicate things. Just ask.
Richard: Okay.
Patrik: I’ll tell you how to approach. You’re the next of kin. You go back to them and you say, “Hey, I want access to all of the medical records.” You could say that you
want access to the x-ray and the ABGs. And you need to tell them, “I want it by three o’clock today.” Or with timeline, change the approach.
Richard: I agree with that. I’ll tell you what I’ve had so far. I’ve had the brush off, but I’ll give you the brief of what I have had. I did start to investigate what was called Day Track form where basically the paper where you fill it out and send it off. And then they say it takes
about twenty-eight days and while the consultant has that information, you may or may not be able to access it until we finish it.
Patrik: No no no. That’s rubbish. That’s all rubbish. So you’ve got to change the approach.
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Richard: Well that’s different.
Patrik: Yeah. You got to change the approach. You got to change your language. You got to change the way you’re communicating with them. But that would be all part of the consulting. So what I’ll do next is I will send you the options in an email. We can start very quickly. For you, it’s now ten o’clock at night, is that
right?
Richard: Yes. Close to ten.
Patrik: We can spend an hour if you like. We can do it tomorrow morning your time. It’s entirely up to you.
Richard: There is a consultant that he’s very hard to get hold of and he was in this morning. I asked today, when I saw him later on in the
corridor, “Can I talk to you in the morning?” And he muttered and said, “No, I’m far too busy. Can’t be done.” Now, he’s the only person that seems to be the person you can ask the question, and he might or might not answer.
Patrik: You’re over complicating.
Richard: How should you’ll find an answer.
Patrik: Yeah You’re over complicating it. It could be as simple, to begin with, to talk to a nurse. Don’t think that just because there’s a consultant. Yes he would make some of the decisions but it would helpful if I could just talk to a bedside nurse with you. That would give me a lot of insight. Then we can take it from there. What’s your email address?
Richard: Certainly. If you have
a pen, there it’s and that’s my email. And I would certainly appreciate your advice and support. I’d like to just a quick word of my aunt obviously because I’m grateful you’ve run back tonight. Thank you so much, I’m so grateful to get firm advice on this in terms of job.
I do have some images. They might not be today off the ventilator I think. So that would be a couple of days old but you would need the very latest on that one. That’s your
call. I would have to go back in tomorrow and discreetly try and take a photo of it. Even the old ones, you’d get some coming. What I can tell you, if it’s helpful: PS over PEET. That would mean more to you than it does me.
Patrik: Yeah. It’s really a matter of now. If you want to consult, then we get on with this.
Richard: Thank you very much indeed. I
appreciate your call back. And so in simple terms, I read the email and I either call you back tonight or in the morning?
Patrik: Yep.
Richard: I wait for your email to come.
Patrik: Yep. My email will come through in the next half an hour.
Richard: Oh I see. So it’s all very well set up. Thank you very much Patrik for your time. Thank you for listening and I really appreciate your support. I will read through the email as soon as I get registered. Either tonight or tomorrow morning I will connect with you as I can okay?
Patrik: Okay. All the best for now.
Richard: Thank you very much Patrik. Much appreciated.
Patrik: You’re very welcome. Take care. Bye bye.
“Thank you very much for being a part of the previous series of 1:1 consulting and advocacy sessions. Stay tuned for more upcoming episodes with RICHARD that we hope are informative and empowering.”
Kind Regards
Patrik
