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 My sister is in ICU on a balloon pump and ventilated after cardiac surgery! The ICU doctors want to stop treatment against our wishes and let her die, what should we do? (PART 18) 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 question in the last episode
was
My sister is in ICU on a balloon pump and ventilated after cardiac surgery! The ICU doctors want to stop treatment against our wishes and let her die, what should we do? (PART
17)
You can check out last week’s episode by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to continue answering the next question from one of my clients Emma, which are excerpts from 1:1 phone and email counselling and
consulting sessions with me and the question this week is
My sister is in ICU on a balloon pump and ventilated after cardiac surgery! The ICU doctors want to stop treatment against our wishes and let her die, what should we do? (PART 18)
You can also access previous episodes in this series of questions here PART1, PART2, PART 3, PART 4, PART 5, PART 6, PART 7, PART 8, PART 9, PART 10, PART 11, PART 12, PART 13, PART 14, PART 15, PART 16 and PART 17 by clicking on the relevant links.
In this series of 1:1 phone and email consulting and advocacy sessions with my client Emma you’ll get real in-depth knowledge about cardiac failure in Intensive Care, how it works, the treatment and therapy options, how to wean somebody off the ventilator and most importantly, you’ll discover how to not take “no” for an answer and get strong advocacy.
You’ll
witness how I can lead Emma in going from the Intensive Care team trying to coerce her and her family to agree to a “withdrawal of treatment” as being “in the best interest” for her sister to challenge that and the Intensive Care team having to do everything within their power to safe her sister’s life and turning the
dynamics upside down in Emma’s favour.
That’s what happens when you have the right advice from a professional who knows Intensive Care inside out and who knows how to manage the dynamics and who can take the fear away of being intimidated by the Intensive Care team!
Enjoy this consulting and advocacy session and use it to your advantage when you have a family member in Intensive
Care!
Emma: The nursing staff… it’s like now when I ask them the questions you’re giving me, it’s like they get very nervous. Yesterday she was trying to tell me she was doing good and that’s all she was going to tell me so I thought…
Patrik: Yeah, yeah, yeah.
Emma: They get
really nervous. The doctors is kinda hard because they’re so invasive. They said that they would let us know more on Tuesday but its Friday now.
Patrik: Yeah.
Emma: And we still don’t know anything. Its like, they’re avoiding…
Patrik: Yeah, yeah,
yeah.
Emma: Maybe they’re just busy. I don’t know.
Patrik: Look, it’s probably a combination of them being busy, them wanting to wait and see what happens… on the one hand, I’m not… I’ve sone that before that over and over again that your best plans… you might not be able to implement your best plans because the patient is not ready. Maybe they are
busy, maybe they have other priorities for now, maybe other emergencies. I get that but at the same time they may be avoiding and they may wait and see. Gently, push them and gently engage them if you can and if you feel like they’re not engaging, ask for a meeting.
Emma: Okay.
Patrik: What else? I’m just trying to think. Now, its Friday morning
for you?
Emma: Yes.
Patrik: When are you going to see your sister next?
Emma: I get off at five today so, I’ll make it there for the eight to ten to visit.
Patrik: 8-10pm?
Emma: Yes but I’ll call and check on her. I’ll try to call them about… they said call at nine… after nine or something cause I guess they’re busy around this time.
Patrik: Does your brother-in-law… does he understand as much clinically as you do? Have you sort
of…
Emma: He does not. He don’t understand it at all.
Patrik: Okay
Emma: And no matter how I try to explain it to him he doesn’t understand.
Patrik: That’s okay. That’s okay. As long as you do
understand. It’s more a responsibility for you but that’s okay. Right, okay… I’m just trying to think. Coming Monday the intensive care doctors will change again? Is that what they’ve done?
They change on Monday?
Emma: They do. It’s the same doctors but they just switch over a few times.
Patrik: Yeah, yeah. They rotate. Okay. Have you spoken face-to-face with the cardiac surgeon at some point?
Emma: Is that the one that will do the surgery?
Patrik: He’ll do the surgery. The cardiac surgeon…
Emma: He was in a big
meeting. He was in big meeting.
Patrik: Okay, who was the person saying she wouldn’t survive without the ballon pump? Was that ICU or was that the cardiac surgeon?
Emma: It was the cardiac surgeon in the ICU. It was pretty much all of them.
Patrik: All of them, okay. Okay. Just remind
me and this was the surgery… who did her surgery in 2009?
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Emma: It’s his boss, the head guy. We have talked to him. We haven’t talked to the surgeon who did it and they say he was the who accepted her to the hospital and this is… they’ve been waiting to talk to him to see if he would do the surgery this week. So, the big guy that’s over him said it would be up to him now
is what the ICU doctor told me.
Patrik: Okay, okay. The cardiac surgeon that you’ve spoken to, do you feel like that it’s an experienced person, a younger person, an older person? What’s your feeling around where they are in terms of their experience?
Emma: The one that I spoke to, the resident, he was older so…
Patrik: Okay, so he should have experience?
Emma: I think… Yes, experience.
Patrik: Okay but he’s not…
Emma: He’s a little arrogant, I think.
Patrik: Yeah.
Emma: As soon as he’s…
Patrik: Yeah sounds like, sounds… Do you think that ICU is arrogant too?
Emma: They’ve been pretty much nice.
Patrik: Okay.
Emma: I can’t tell if they’re genuine or not.
Patrik: Yeah yeah.
Emma: By they avoid a lot. I have to ask them to come out and just hang out and wait and say, ‘Hey I’ll just wait until you’re done,’ and… but then finally
they’ll come to me so…
Patrik: Okay. Okay. So, it’s really… the next step really is gauging, are they still positive? What’s the go about the surgery? Have they just not made a decision because they don’t know either? You just want to find out where are they in terms of their opinions? Where are that at in terms of what are their plans? Weaning her off the Dobutamine, that’s the next step but you still wanna talk to them
now and you do wanna remind…
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Emma: Okay.
Patrik: You do want remind them that, in a nice way… you do want to remind them in a nice way that their predictions have been terribly terribly wrong and it could have cost a life.
Emma: Okay.
Patrik: When you are going into a meeting, who will be there from your family? Just you and your brother-in-law or other family members too?
Emma: Me and my brother-in-law and my sister’s daughter.
Patrik: Okay.
Emma: And one of
my other sisters. So probably about three or four of us.
Patrik: Okay and really close family members are the husbands, siblings and child, basically.
Emma: Yes.
Patrik: Right? Okay, that’s good. Those are the next steps but no matter the next steps the good news is she’s
improving. Baby steps…
Emma: That’s what I’m grateful…
Patrik: Right. Baby steps still. If they wean down the Dobutamine by one everyday, that will be a gift.
Emma: Wow!
Patrik: That would be a gift.
If they can do that one a at… she will be off the Dobutamine in four days, that would be… that’s a reasonable time frame even though it feels like an eternity to you.
Emma: It do.
Patrik: Yeah, it would be a good time frame and as long as they get there, that’s the main thing. It doesn’t matter how long it takes, as long as they get there and the
keep start… and they start moving her. That would be very important.
Emma: Okay.
Patrik: The other thing that I’m mindful of… so, with the dialysis especially with all the norepinephrine and the Vasopressin, the other thing you may want to ask them and I don’t know, maybe they mentioned it. When you look at your sister, what does her skin look
like? Is her skin fragile?
Emma: No its clear. Her skin is beautiful. It looks better now than when she was
herself, before everything happened.
Patrik: Okay. Look, the reason I mentioned this is, when Patients are on the Norepinephrine, the Epinephrine and Vasopressin, especially if they’re on it for a
week or for two weeks, the main risk of those drugs is what’s called vasoconstriction. Basically, the skin can get fragile. That could be one of the main side effect. So, if her skin looks beautiful, that’s great and it could be a testimony just to good nursing care. But you would only see probably her arms and her legs.
Maybe ask them is she’s got any pressure sores.
Emma: She do have those. She do.
Patrik: On her back probably?
Emma: Yes and on her legs.
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Patrik: Do you know how big those pressure sores are?
Emma: I’m not sure how big they are?
Patrik: Look, I can tell you that’s a concern.
Emma: Okay.
Patrik: That’s definitely a concern. Is she on an air mattress? Do you know?
Emma: She is.
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Patrik: Okay, that’s good. That’s good. Number one, a pressure sore, it can happen but it shouldn’t happen because
that’s a sign… it can be a sign of poor nursing care. It doesn’t have to. I know with the vasopressin and norepinephrine, the main side effect is fragile skin and the pressure sores can happen but it’s a case of the nurses trying to prevent that. But anyway… it’s good that you know she does have them. How did you find out? Did they tell you or did you ask?
Emma: She kept saying that she was hurting and I then I asked them
and there was on her leg, I think. So, I’ve been asking them make sure they change the dressing cause one day it was just barely hanging off so…
Patrik: Okay, alright. Okay. Look, you can’t change it for now but it’s good that you know it’s there. Have they changed the lines? Have the changed the central line and the arterial line and the dialysis catheter?
Emma: The dialysis catheter, they did but one of the lines, they said that they were gonna change yesterday and I found out about the other one today.
Patrik: Okay. Alright. Making
sense of what your next steps are?
Emma: Mm-hmm (affirmative)
Patrik: Does it make sense? So, you know what you have to do next?
Emma: Yes
Patrik: Okay.
Emma: It makes sneeze.
Patrik: Okay. Yeah, okay. No, no look, the good news is, she’s making progress.
That’s the main thing. You really want to hear it from the horse’s mouth.
Emma: What do you mean?
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Patrik: What they say next.
Emma: Okay.
Patrik: Did you have any other questions at this
stage?
Emma: No, I’m just ready for it to all be over. In a good way.
Patrik: Yeah, absolutely. Absolutely but…
Emma: Yeah.
Patrik: Yeah, however, this is why it’s so important. If she is going for
cardiac surgery…I’ll tell you what can happen if she is going for cardiac surgery. There’s a very good chance she will go on the intra-aortic balloon pump (IABP) again.
Emma: Wow!
Patrik: Very good chance for that. So, that’s why I appreciate that they need to take certain steps to get her ready for cardiac surgery. Okay? There’s a very good change that… it’s life-saving surgery but its’ also risky; very risky. Right?
Emma: Okay.
Patrik: So, you’ve got to understand that if she…
whether she’s going for surgery next week or maybe even in two months because they may want to send her out of ICU first and where it’s safe. There is a high risk she is going back on the balloon.
Right?
Emma: Oh, wow!
Patrik: And that’s why its so important that’s she is strong and that
they…
Emma: Oh, okay.
Patrik: And that they have a plan.
Emma: Okay.
Patrik: And if they need a few days to have a plan, that’s fine. As long as they come up with something. As long as your sister is
improving and if they work out a plan and they are genuine, that’s the main thing.
Emma: Okay, I just want to make sure that …
Patrik: So, your next steps are clear?
Emma: Yes?
Patrik: And yeah, keep doing
what you’re doing and keep talking to your sister.
Keep talking to your family. So far it’s worked and also I’m not saying that there are going to be any setbacks but if they do happen… or let’s put it another way. They can happen and don’t be discouraged. She has been moving forward since Monday. That’s the main thing.
Emma: Okay.
Patrik: Those setbacks can happen.
Emma: Okay
Patrik: Just being mindful that it can happen and it’s often two steps forward, one step back. The most important thing is she’s not going back on the ventilator.
That’s the main thing to look
for.
Emma: Okay. Okay.
Patrik: Okay?
Emma: Alright.
Patrik: I’m sure I’ll hear from you.
Emma: You
will.
Patrik: Look, touch wood and things are improving and try and engage them.
Emma: Okay
Patrik: Okay?
Emma: Okay.
Patrik: Yeah, all the best for now.
Emma: Okay
Patrik: And I’ll talk to you when you need me.
Emma: Okay thank you so much.
Patrik: You are very welcome. You’re
very welcome. All the best for now.
Emma: Okay, thank you.
Patrik: You’re welcome. Take care. Bye bye
Emma: Okay, bye bye
Patrik: bye
