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 one of my clients and the question in the last episode was
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 the next questions from one my clients Andrea who has her 34 year old sister in Intensive Care with non-Hodgkin’s Lymphoma and is currently experiencing decrease in blood count as well as having second thoughts about the treatment her sister is getting.
The Intensive Care team is wanting to stop or “withdraw treatment” against Andrea’s and her families wishes and she’s not prepared to let her sister go without a fight!
I don’t want other people to go through this horrible experience me and my sister had gone through in the Intensive Care Unit, what should I do in order to prevent this?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Andrea here.”
Patrik: Okay. You got to ask that NFR stuff, because I wouldn’t trust them at all.
Andrea: No, I don’t trust them. I don’t trust them at all. I’ve seen enough. Like one stage they didn’t scan her brain, after being in hospital for four days. I’ve lost absolute faith, in them.
Patrik: Absolutely. Absolutely.
Andrea: And, I think it’s just, sort of, incompetence. One thing I didn’t understand, and I said it to my sister, is, her vas cath she had on her chest, and that was either form of infection, for her … sepsis, or it was getting aggravated and which is like, we’ve relived this, it’s like deja vu, we’ve actually had this experience after she had her skin cell transplant. She was in ICU, on high dependency, not on the … the critical one …
Patrik: Yeah… not ICU, yeah, yeah, yeah, yeah.
Andrea: Yeah. And, I wouldn’t understand why they wouldn’t just take it out. Cause, it’s a form of infection, she’s in ICU.
Patrik: Yep. I tell you what’s normally happening. I mentioned previously the arterial line, where they take blood gases, and she would have a central line. They …
Andrea: She’s got one in her hips.
Patrik: Right, right. They should be changed every 7 days …
Andrea: Or her leg, whatever.
Patrik: Yeah, yeah. They should be changed every seven days in ICU. Now, the vas cath can have a lifetime of up to two months, at times.
Andrea: Is that right?
Patrik: Yes, but … but …
Andrea: She’s had it in months.
Patrik: Right, yeah, yeah. But, as soon as there’s any suspicion of infection, they definitely need to change it. Right? That lifetime of two months means if patients are infection free. Right? As soon, as there is suspicion of infection, that’s the first thing that needs to be changed.
Andrea: Right, okay.
Patrik: Right? But the vas cath … are you sure it’s vas cath, or is it a Hickman’s? Have you heard of a Hickman’s?
Andrea: I’ve heard about of vas cath, but they said a Hickman’s line as well.
Patrik: Right, yeah, it’s interchangeable terms.
Andrea: Yep. Cause, I know she had something in her chest. The central line, because they find it very hard to get blood out of her.
Andrea: They kept it in there. And, she actually wants to pull the thing out, she looks all … meeting with her … with her haematologist, end … end of January. She said, “I want to take it out.” I go, I said to my sister, “What is it that you want to do this year?” Cause he’d given her a timeline, of up to 12 months. “What is it that you want to do this year, to experience?” She goes, “I just want to go on the beach.” Something so simple. But, she hasn’t seen the sand, or the beach for two years, or experience that.
Andrea: And then, we went to a haematologist, and he talked about it, but later on down the tracks. Cause they’re so hard to go in, you’ve got your tube, arteries in there, they’re actually damaged, from all the stuff. We might struggle to put it back in there, the tumour might be so far gone that we’re gonna have to go through the tumour. He talked her out of it.
Patrik: Which is terrible. Because …
Andrea: Which … she actually just wants to see the sand and water.
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Patrik: Yeah, absolutely. Absolutely.
Patrik: Quick other question. Does your sister have private health insurance?
Andrea: No. She doesn’t.
Patrik: No, that’s okay. Yeah, yeah, yeah, yeah.
Patrik: That’s okay. What’s … what’s your experience … being … prior to coming in to ICU, every hospital admission she’s been on the haematology ward at St. George?
Andrea: That’s right.
Patrik: And, how was that compared to ICU? In terms of attitude, from people.
Andrea: I don’t know. They were all lovely to her. She’s got the personality where everyone just loves her. Her doctor positive, and kind. The nurses were good, they obviously pushed the chemo straight away, explore other …
Patrik: Options. Yeah, yeah, yeah, yeah.
Andrea: Other options. I challenged that, and I asked, “Can we use vitamins, can we use Chinese traditional medicine?” And all that. Not do it during the chemo because of the interfusion of the compounds of the drugs and stuff. The usual standard response, right?
Patrik: “One size fits all” approach, which is not appropriate.
Andrea: Yeah. No. And, she was … 70 percent chance of being cured after one round of chemo, and a 30 percent chance that it won’t work. She was, unfortunately, the 30 percent. There were odds, but all those odds, where they say, one in six, she’s always been the one. One in ten, she’s always, unfortunately, been that one.
Andrea: Obviously traditional … not traditional, but obviously Western medicine hasn’t worked for her. We’ve been exploring acupuncture and traditional Chinese medicine, about two months ago, with her. And then, I thought that was working, but then she had a stroke. Then my father said, “It could be the acupuncture, or the Chinese herbs.” I go, “It’s not that giving her the stroke, it’s either steroids or the radiation.”
Patrik: Yes, very much likely. The reason I’m asking about, sort of, what happened on the ward, I’ll give you a quick example, any sort of haematology, slash, oncology patient, shouldn’t be in ICU. And the reason I’m saying that, when … whenever I looked after haematology, oncology patients in ICU, there’s way more interaction going on with the mother ward, if you want, like the haematology ward, than with any other specialties.
Patrik: I’ve seen patients from the haematology ward … nurses from the haematology ward visiting their patients in ICU, even doctors. I found them … most of my work, in Melbourne, I’ve done at the Alfred. Right? And, the haematology ward there, is fantastic. I don’t know anything about the outcomes, what I am saying is, they are fantastic in terms of their nurturing their patients, their families. I think they’re much better than any ICU can ever do … for that type of patient.
Andrea: Yes. I mean, they’ve come … the head nurse she’s come to visit Diana. The mother haematology nurse she’s come to visit my sister. They’ve been good, but just her doctor, he’s actually really turned negative. And it’s like he’s all groomed, like he has someone’s words. And the last time he delivered the message to Diana, of course, she was actually by herself, in the ward.
Patrik: Yeah. Yeah.
Andrea: And she’s really upset. And it’s just why couldn’t you just … try to comfort her, but he’s actually turned really negative. He was really good to start with, but then he’s turned really negative, and he’s like … last week on a Wednesday, I think it was, or the Tuesday, I saw him on the ward, because I was trying to find … her personal belongings, and he said, “She’s got just hours to live.” He said that to me.
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Patrik: Yeah. And they … and they do it all the time, sort of, saying, people have only got hours to live. And, that’s just scare tactic, and I think I mentioned that to you on Friday, they would never ever tell they going to cure your sister. They would never ever. They don’t do that with a single patient in ICU. They would never say, “Oh yeah, we’ll cure your mom, your dad, your sister.” Never ever. They always negative. Because, what would happen if they say to you, “It will all be honky dory, your sister will be out next week.” It’s never going to happen.
Patrik: You could be reading between the lines anyway. But, it’s so inappropriate, when doctors and nurses say that, “Oh, your sister only has hours to live.” She’s beaten the odds so far.
Andrea: Yes, that’s right. And that’s why I … like yesterday, when they were saying, “There’s pretty much no chance for her and no chance of brain recovery.” I knew, in my mind, I was saying, “I don’t believe you, I don’t believe you, I’ve got hope. I don’t believe you at all.”
Andrea: I’m actually talking to myself, thinking, “No, I’m not accepting what you’re saying.”
Andrea: “I’m not accepting what you’re saying.”
Patrik: Yeah… Yep. No, no, and that’s good. And, that’s good. Look I …
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Andrea: Whether I’m just delusional or not, or I know if it is a different story Patrik.
Patrik: Yeah, Yes, yeah. And, that’s right. I hope it’s good, but you’re also realistic enough to know that this could go either way. Right?
Andrea: I understand that, I understand that.
Patrik: We … I’ve worked with a client before Christmas, in Brisbane. I can tell you, it was probably one of the most difficult suggestions that I’ve ever dealt with. Patient was in ICU, 62-year-old man. Cutting a very long story short, the doctors were basically telling the family, at the bedside, in front of a patient, basically saying, “Oh, yeah, he will be dead tomorrow.”
Patrik: That is so inappropriate. Even if… exactly. You’ve got to …
Andrea: And they … there’s all these nurses saying it in her hearing distance. And I’m, “Can we move away?”
Patrik: And, yeah, you can bring it up now, if you feel like this is happening again, you can bring it up now, if not, I will mention it tomorrow. Because, I think it’s so inappropriate.
Andrea: For sure …
Patrik: So inappropriate. Absolutely.
Andrea: But they can hear. And, to give up the fight, don’t give up the fight.
Patrik: That’s right.
Andrea: Even thought that I’m dying. But …
Patrik: That’s exactly right. It’s very inappropriate, and it’s very unprofessional. They’re not even doing justice to their own profession by doing that.
Andrea: No, I agree.
Andrea: Should I be telling them that you’ll be attending the family meeting?
Patrik: Okay I would. I was, yes. Yeah, no, no. I’m just, that is something we need to discuss – how we go about this.
Patrik: I have had meetings where I come as a quote, unquote, consultant. And, I have come in … in meetings where I have come in as the cousin, or the nephew, depending on the situation. I will … I will entirely leave that up to your discretion. I can play any role you want me to. Right?
Patrik: It’s really, at the end of the day it’s entirely up to you who you want to have in that family meeting. Okay? And, whatever you feel works in your situation, I can take up any role you would like me to. I can be the cousin, who’s an intensive care nurse, I can be a consultant who’s an intensive care nurse, it doesn’t really matter. I … I have found … in some situations the family member who is in another city works good, works well. But, I have also found that the consultant role works well too. It really depends.
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Patrik: I’ll leave that entirely up to you. I actually …
Andrea: What’s your preference? What do you tend to.
Patrik: My … I tell you … I tell you there’s almost a cultural difference. I do a lot of work in America. In America, the consultant seems to work well. But, that is almost … it’s almost a cultural thing. Whereas, in Australia, I have found, the family member works better. Because … I tell you why … I tell you why … it’s not so controlling, and having worked in Sydney, and in Melbourne, I know how ICUs think.
Patrik: I know how … and now I have a much better understanding about how ICUs in America think. There is a … In America, the consultant works well, for whatever reason, I don’t know why. But, here in Australia, the family member works better.
Andrea: Alright, okay.
Patrik: And, what I would do, is … will you be seeing that consultant before the meeting tomorrow?
Andrea: Which consultant, the ICU people…
Patrik: Yeah, yeah, yeah.
Andrea: I’m not sure. I think so. I don’t know. He’s not very approachable. He’s got a different approach. With the other guy, used to come by and actually give us an update all the time like in a daily basis…
Patrik: Yep, yep.
Andrea: This guy seems … a bit more formal.
Patrik: Yep, yep. I’m just trying to think … are you in contact with the social worker?
Patrik: Have they offered you a social worker?
Andrea: No. They … I mean, we have been in contact with a social worker. But, just on a very infrequent, irregular basis.
Patrik: In ICU, or on the ward?
Andrea: In ICU.
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Patrik: Okay. They’ll probably pop by, they’ll say, “Is there anything we can do?” And if you say, “No.” Then they move on.
Patrik: Right. Would you … do you feel it would be a benefit to have a social worker involved?
Andrea: Yeah, yeah, sure. I mean … I’m actually gonna ask if every single specialist can be involved.
Patrik: Good. I think …
Andrea: The haematologist, ICU, and the neurologist. I want them all together.
Patrik: I think … I think that’s very appropriate, to have all of them there. I … I also believe … some social workers can be very good; some social workers can be extremely helpful. But, they’re employees of the hospital at the end of the day, they’re still … depending on who they are, they can be very helpful.
Patrik: It might be worth … here is my recommendation. Have a think, overnight, in how you want me to come in, as a consultant or as a family member. As I said, I can play either role. Make that demand, that you want to have the neurologist there, and the haematologist. And, I would even go as far to not have the family meeting if all of your demands haven’t been met. That’s how far I would go, if I was you.
Patrik: Because … because … I tell you what happens in ICU. Nine family meetings out of ten, are called ad hoc, and they walk all over families. That’s what happens. Especially in situations like that. Because, they do it every day.
Andrea: And, they do what sorry? They … is that … what was the last bit?
Patrik: Yeah, so they call … often call family meetings ad hoc, at the last minute. To deliver bad news, and walk all over families, if they’re not prepared. At the end of the family meetings, there is often that withdrawal of treatment, discussion. And, maybe even, a plan for that.
Patrik: In your situation, I’m not worried about this, because you are preparing yourself.
Andrea: Oh yeah, we’re prepared to fight.
Related information about family meetings:
Patrik: Yeah, yeah, exactly. And, also, what I would advise, no matter whether that family meeting is tomorrow, or next Tuesday, whatever it is. If you, or I feel, this is not going in the direction that we want, we stop. We just walk out. Cause, they’re not used to that. They have … they’re used to families bowing down to them, all the time.
Patrik: Right? They’re not used to people challenging. And … and hopefully we can work with them. I always prefer to work with people. That would be the ideal approach.
Andrea: For sure.
Patrik: I’m always happy to cooperate. But, if we think it’s not … if we think all they want to discuss is withdrawal of treatment, then we got to stop.
Patrik: And, walk out.
Andrea: Yep. I understand.
Patrik: Right. I think for now, have a think, what you want to do. I will send you an email this afternoon. Just … with a bit more information about, with life support, what we’ve discussed now. Was there anything else you needed to clarify?
Andrea: No, I think that’s it. I think I’ve taken enough of your time, Patrik.
Patrik: That’s okay.
Andrea: Yeah, I think that’s it. Yep. I think that’s it.
Patrik: Okay. And, have you got any indication what time the family meeting might be?
Andrea: No …
Patrik: That’s okay.
Andrea: They haven’t said anything today, I might find out today, because they said Monday or Tuesday. I’ll try to find out today. Because, I’m gonna ask for all these specialists, I don’t see it happening tomorrow. Cause, everyone comes back, they do their rounds.
Patrik: Yes, I don’t see it happening tomorrow either. I don’t see it happening tomorrow either.
Patrik: Yeah. I can … I can make time any time, I will be … whatever time it is. You just let me know.
Andrea: Okay. Okay. Thanks.
Andrea: Alright, thank you Patrik.
Patrik: Oh, you’re most welcome. You’re most welcome. Take care.
Andrea: Have a good day. Okay. Bye.
Patrik: Bye-bye. Thank you, bye-bye.
“Look out for next week’s episode of YOUR QUESTIONS ANSWERED where I continue to help Andrea with this challenge of having her 34-year-old sister in ICU!”
How can you become the best advocate for your critically ill loved one, make informed decisions, get peace of mind, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?
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- How to ask the doctors and the nurses the right questions
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
- How to eliminate fear, frustration, stress, struggle and vulnerability even if your loved one is dying
- 5 mind blowing tips& strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
- You’ll get real world examples that you can easily adapt to your and your critically ill loved one’s situation
- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
- You’ll get crucial ‘behind the scenes’ insight so that you know and understand what is really happening in Intensive Care
- How you need to manage doctors and nurses in Intensive Care (it’s not what you think)
Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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