Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if
you’re not a doctor or a nurse in Intensive Care!
This is another episode of YOUR QUESTIONS ANSWERED and in last week’s episode I answered another question from our readers and the question was
My Daughter is in ICU on a Ventilator & the Doctors Give Her a Poor Prognosis Without Evidence! Help!
You can check out last week’s
question by clicking on the link here.
In this week’s episode
of “YOUR QUESTIONS ANSWERED” I want to answer questions from one of my clients Tess, as part of my 1:1 consulting and advocacy service! Tess’s daughter is on a ventilator in the ICU after cardiac arrest. Tess is asking why does the ICU team talk about the end of life for her daughter so soon.
My Daughter had a Cardiac Arrest & is Critically Ill in the ICU. Why Does the ICU Team Talk About the End of Life for Her So Soon? Help!
Patrik: Don’t worry too much about what they say, watch what they do, that’s way more important. So, if they are giving blood and they’re doing a tracheostomy, that is
a sign to me that they want to continue, irrespective of what they’re telling you. Now, they’re probably painting a very negative doom and gloom picture, is that correct?
Rey: Yes.
Tess:
Yes.
Patrik: Yeah, okay.
Tess: Severe brain injury.
Patrik: Yeah, yeah, I understand that. Yeah, yeah.
Tess: From anoxia or hypoxia.
Patrik: Yeah, I
understand that, okay? Again, they’re protecting their downside. What does that mean? Well, if they came to you and said, “Hey, we’re doing this, this, this and this and your daughter will walk out of ICU in 3 weeks,” and if it’s not going to happen, you could hold them liable by them painting the doom and gloom, they have your expectations very low.
Tess: Right, hedging
bets, yeah.
Patrik Hutzel: Exactly, hedging bets. So (A), you’ve got to read between the lines, that’s number one. (B), you’ve got to watch what they do, not what they say.
Tess: Right.
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Patrik Hutzel: Okay? If they
wanted to provide palliative care only, they would not give blood and they would not do a
tracheostomy.
Tess: Right.
Patrik Hutzel: Okay? So this
is really important because it’s so important that you watch what they do and not what they say. I’m not saying don’t pay attention to what they say but watch whether it’s matching, and it’s not matching, I can tell you that straight away. What they say and what they do is not match.
Tess: Okay, I suspected as
much, yes. I feel that they are slightly stonewalling and the fact that…
Rey: Right.
Tess: They’re not going to
apparently confirm anything or otherwise until they’ve done the tracheostomy. So it’s a bit of a fait accompli I’m being
presented with and they wish for my signature before coming today.
Patrik Hutzel: Right, right, okay. So that’s out of the way. For someone that’s in palliative care, they would never suggest a tracheostomy and they would never give
blood.
Tess: But this was given prior to her entry back into the hospital for the past…
Patrik Hutzel: How long ago?
Tess: She was transferred when?
Rey: It was on
Friday.
Tess: Friday of last week.
Patrik Hutzel: Yeah,
sure, sure. But they would have been negative then, wouldn’t they?
Tess: Oh, they’ve been basically negative all the way along.
Patrik Hutzel: Yeah, from day one, yeah.
Tess: But we’ve been in a state of… Not disbelief but we’re definitely very guarded about their prognosis.
Patrik Hutzel: Sure.
Tess: We’re in
doubt.
Patrik Hutzel: Okay. And for the record, do not expect that to change. Do not expect them to change their rhetoric, it’s not going to change, I know how hospitals operate.
But what’s very important is to watch what they do, and whether their words match their actions.
Tess: But what is curious to me, also which is an important bit of information, is with the ECGs (electrocardiogram) and the EEGs (electroencephalogram) that were already established between the time upon her entry and also up until this point, having not been able to see them, obviously we’re in the dark on that but the MRI (magnetic resonance imaging),
they just randomly rang up. Shaina randomly rang up last night at seven o’clock, which was totally unexpected, and then said, “We are intending to do an MRI on Sara tomorrow afternoon, we need to find out whether there is any metal in her system, anything whatsoever.”
Patrik Hutzel: Any
what?
Tess: Metal.
Patrik Hutzel: Metal, okay.
Sure, sure. Yes, yes.
Tess: And I said, “For what purpose is her MRI?” I was told it was for the C (cervical)-spine, that had been suggested by Dr. Reina. And I was basically told that they were
going to go ahead and do it and I said, “The only thing that I believe is metal in her body would be obviously crowns in her mouth,” yeah?
Patrik Hutzel: Right, right.
Tess: And I asked for what
purpose and it’s C-spine. Something was mentioned of C-spine, at the back of her neck they want to assess something.
Patrik Hutzel: Yeah, no surprises there.
Tess: Okay.
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Patrik Hutzel: No surprise there. So when she had the cardiac arrest, she would have fallen on the floor?
Tess: No, she wasn’t,
she was reclining in bed. She was actually upright and then I took away to give her CPR (cardiopulmonary resuscitation) at the moment that she passed out on the bed.
Patrik Hutzel: All right, okay. Fair enough. Okay then, because normally what happens, if someone has a cardiac arrest out of the hospital, they may collapse and then they
do need to actually MRI the C-spine, making sure there is no damage.
Tess: No, there wouldn’t have been any damage unless the paramedics… Who were very timely, came within a matter of less than 10 minutes and all the while I’m doing
mouth-to-mouth after Romeo had taken over and then the other personnel was doing, under instruction over the telephone, compressions.
Patrik Hutzel: Right.
Tess: And I was told
to get off of the CPR and mouth-to-mouth, all the while Sara is obviously passed out and we continued and maintained that process of trying to help her until the paramedics interceded, intercepted.
Patrik Hutzel: Sure, sure.
Tess: And they were
very fast.
Patrik Hutzel: How long was the time between cardiac arrest and then the revival of such? How long?
Tess: What was the time roughly?
Patrik Hutzel:
Roughly.
Tess: It was difficult to assess that, probably about maybe in the region of about maybe 20 minutes. They’d exhausted shocking her.
Rey: They had to go out and get…
Tess: They had to go
out and get a new defibrillator at the time.
Patrik Hutzel: Right. Right, okay.
Tess: And then other
paramedics came in the process. And because they had closed the door on the situation in her bedroom, she was placed on the floor. She had actually excreted on the floor.
Patrik Hutzel: Right.
Tess: In the process
and everything, and they were trying to suss out how to get her downstairs and as she left, she was actually having a heartbeat and breathing of her own accord.
Rey: Breathing of her own accord as well.
Tess: Yeah, before she
left.
Patrik Hutzel: Right, okay.
Tess: So to be
perfectly honest, look, the first thing that was sketchy was that it said that it was at 4:00 in the afternoon and it wasn’t, it was later.
Patrik Hutzel: Right, okay.
Tess: It was after 7:00 in
our recollection of what happened.
Patrik Hutzel: Right.
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Tess: But we can establish the actual time that you’re asking for by speaking to the personnel who actually made the phone call to get the paramedics, yeah?
Patrik Hutzel: Right. Okay, a couple of questions there. You should definitely try and get the paramedic report, that should be part of your investigation. But can you actually
visit or are you locked out because of COVID?
Tess: No, I can visit only one hour a day and no other family member is allowed to see her, although they did before she left her previous hospital, actually get momentarily
to be close to her, both Romeo and Rey. And that was literally for maybe four minutes and that was an exception.
Patrik Hutzel: Right. Why is it only an hour a day? Is it because of COVID?
Tess: No, that’s what
we’ve been told.
Patrik Hutzel: What?
Tess: That’s what we’ve been
told, that’s the remit that they are operating under, that’s the policy.
Patrik Hutzel: That’s terrible. So it’s got nothing to do because there are COVID cases in there and they’re worried that families might get COVID?
Tess: It may be an underlying reason why they are.
Patrik Hutzel: I would
ask if I was you, most ICUs pre-COVID have open visitation, pre-COVID. It has changed with COVID dramatically, that’s one. I would ask if I was you. And why is it only that you can visit? Why can’t her dad visit? Why can’t whoever else who would be an important person for her? Why’s that?
Tess: Yeah, there is
no real reasoning to it other than what we have established thus far, which is that we’ve basically been told only one member and that is for everybody.
Patrik Hutzel: So it’s not unique to your daughter’s case, it’s for everybody in that ICU at the moment?
Tess: Yes, that’s right.
Patrik Hutzel: Right,
okay.
Tess: As far as I can gather.
Patrik Hutzel: Right, right.
Sure, sure. Well, I would ask if I was you if it’s only for you or if it’s a blanket rule. You or her dad, is it documented that you are the guardian or power of attorney? Do you have any documentation around that?
Tess: None whatsoever, no. I’ve just basically been told, “Well, we’re just dealing with you, Tess, you’re the next of kin.”
Patrik Hutzel: Right.
Tess: That was the
other day.
Patrik Hutzel: Right, okay. And you have asked for access to medical records and they have denied that to you?
Tess: No, they haven’t
denied, they just haven’t been forthcoming. You would assume that if they’d already planned with this specialist approaching me the other day and Romeo that they would have been able to anticipate from Dan taking down notes. As of Sunday, and actually provided some kind of documentary evidence but there was none present.
Patrik Hutzel: Okay. Have
you formally asked them to get access to the medical records?
Tess: Yes.
Rey: We’ve already
asked them.
Patrik Hutzel: Okay.
Tess: I’ve asked them.
Yeah, I said, “I wish to actually see the scans, I want to see the medical records, please.”
Patrik Hutzel: And what’s their response?
Tess: Well, I’m assuming
that this would be forthcoming this week but as of yet I haven’t seen anything.
Patrik Hutzel: What’s been their response when you asked them?
Tess: As I said, Dan was actually quite a bit surprised in his eyes and looked slightly daunted.
Patrik Hutzel: And who is Dan again?
Tess: He’s the doctor
that was dealing with her on Sunday.
Patrik Hutzel: Okay, all right. Well, what I’ll do is, when we come off this call I’ll send you a link to the guidelines around access to medical records, it’s your right. It’s
not a privilege, it’s a right, okay? So yes, the doctors aren’t used to having people ask for that but it’s your right, it’s not a privilege.
Tess: Ultimately we’d like to see her either be able to come home to us and to look after her in the home environment or for her to go to neurological
rehabilitation.
Patrik Hutzel: Yeah. Yeah. Okay.
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Tess: And there’s one
very relatively close by and we’ve been very adamant that we don’t want any of her organs taken.
Patrik Hutzel: Oh my goodness, did they ask you for that?
Tess: No. But we’re stating it so that there’s no uncertainty.
Patrik Hutzel: Yeah, yeah. No, no, good, good.
Tess: Because if they’re
using that and thinking that they can hoodwink us to actually basically lining up…
Rey: Her body’s all right.
Tess: Yeah, her body’s all
right, even though it’s frail, and she had basically a clean diet. Remember, she was cleaning herself out and trying to get as healthy as she possibly… Other than the alcohol of latter-day, and that was low anyway. She’s a young person she would have obviously organs that would be useful to other people.
Patrik Hutzel: Yeah. No, no,
good that you’ve done that. That’s good that you’ve done that. Any talk about DNR? Do you know what I mean by DNR (Do Not Resuscitate)?
Rey: They didn’t speak to us about that.
Tess: No.
Patrik Hutzel: No talk about
that.
Tess: No.
Patrik Hutzel: Have you
asked?
Tess: There was an end of care suggestion or an end-of-life pathway mentioned yesterday or something but that was from extubation. I said, “What’s extubation?” And then that may have been her answer to my… Actually, it wasn’t clear at that time because she was cross-talking with Romeo, but I was trying to establish… They were funny with us, they didn’t
have the right kind of compassionate attitude and also, basically gave the impression… Well, it wasn’t the case of gave the impression, they said they basically can do what they like and that they are in a position where they don’t have personal care for… They care for her well-being but they don’t care for the personality or the individual.
Rey: Yeah, that’s
right.
Tess: They’re emotionally detached and they are desensitized and they readily admitted it, even the consultant said that.
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Patrik Hutzel: This is unfortunately the reality that a lot of ICU professionals are desensitized because for them, unfortunately, a patient is just another number. And
that’s what you are probably up against there. But just quickly talking about DNR and not having access to medical records at this particular point in time, do you know what I mean by DNR?
Rey: Yeah, we know.
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Tess: Well yeah, I’ve got a rough idea. They effectively mark the person as basically, if they go into a critical state they’re not resuscitated.
Patrik Hutzel: That’s right, but you mentioned earlier that when they turned her and she became unstable that they were resuscitating her.
Tess: That was in the other hospital, yeah. But they were making effort to actually stabilize her and they achieved that. And now, as I said, she’s off all of the
other meds except for a feed. She’s got a tube coming out of her right side which is draining, they’re taking off excretions of her lung
cavity as of three days ago, which have been green. They’re basically giving the impression on the upper right lung. There was a puncture in the process, one of the rib cages was broken in the process potentially of the CPR, it was fractured, which would obviously be in the process of healing. There’s a drain coming out of her right side as of I think it’s three days ago, I verified that. And also, what other things? Swelling going up
and down in the limbs.
The 1:1 consulting session will continue in next week’s episode
