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 Mother Had Surgery and is in ICU for Pneumonia. Will My Mum Be Weaned from the Ventilator with A Positive End Expiratory Pressure of 8?
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 Tim as part of my 1:1 consulting and advocacy service! Tim’s
mum had a surgery, with a history of COPD and in the ICU for pneumonia. Tim is asking if Palliative care is the best care option for her mum.
My Mother Had Surgery and is in ICU for Pneumonia. Does Palliative Care Leads to “Mercy Killing” in the ICU?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Tim here.”
PART 1
PART 2
PART 3
PART 4
Patrik: Hi Tim, how are you?
Tim: Oh hi, Patrik, good thank you. How are you?
Patrik: Very good thank you.
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Tim: Yeah, so I had a quick conversation to the nurse this morning, and it’s a different one again, but he just said ah, she went really well. And then my stepdad said, “Oh, how come you’ve done it that way, because all the other times, they’ve done it this way?” And he said, “Oh, they shouldn’t do it that way, because this is the correct way to do it.” And we said, “Why?” And he said, “Oh, because it’s not humidified. It sets really cold air
and it’s just uncomfortable”
Patrik: There always needs to be humidified air, always. Always. Everything else can be painful, can dry up secretions. So always needs to be humidified oxygen or air. Always.
Tim: Well, there you go. And they keep trying to do the hard sell. Again, this morning, the professor came in this morning. He was really nice. He said, “Oh look, it’s only the lungs, there’s no infections, everything’s perfect. It’s just the infection. He has got a bit of that critical illness with the muscle mass, she is a bit dizzy and a bit frail, but her cognitive side of things is very good.” The ICU guy said that he was … That’s it. He
said, “No, that is not what you need or sort of stuff”, he said, “because of the underlying gastric cancer.” But when the professor first did the debulking and everything and he’s the specialist with metastatic cancer and all that. He first told us twelve months, two years we just wait and see, we don’t really know.
Patrik: The professor is the surgeon?
Tim: Correct. He was at care this morning. But we are going to have a meeting tomorrow. I think ICU team is pressuring him, to get her on their path and continue with the lung doctors.
Patrik: Have they specified how it is care? Have they specified this to you? What it means? What it looks like?
Tim: No. Well I did ask one of the nurses yesterday. I said, “They keep talking about palliative care, what did that mean?” And he said, “We just give really strong doses of Morphine or Fentanyl and it relaxes the lungs and everything.” And I said, “So she’s just going to be knocked out and drugged up like she was a week ago with the Fentanyl.” He said “Yeah, yeah.”
Patrik: Right, but you know what that is? You know what that is?
Tim: A death sentence.
Patrik: Say again.
Tim: A death sentence.
Patrik: Very much so. Euthanasia. Are you aware of that term Euthanasia?
Tim: Yes. I know, yes.
Patrik: Palliative care in ICU often means they are euthanizing patients, without using that term.
Tim: Yes, I get what you’re saying perfectly. I’ll be using that word tomorrow.
Patrik: Right, I think you should, but here’s another question and that to me is the ultimate question. Have they asked your mum? You know what does your mom…
Tim: No.
Patrik: Well that’s, you know. My response to that would be “Have you asked my mum?” Because I mean you know, what you said it’s a death sentence without asking, your mum has a say or if you mum you know obviously she’s in this situation. Then obviously you need to take a stand, which I know you are doing. Your response to this needs to be number one, you’re not agreeing with it. You want everything to be done. You probably need to start
talking about euthanasia. You need to refer everything back to your mums wishes.
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Tim: Yeah.
Patrik: Right, and you need to start talking about Intensive Care at Home. Those are the things, and also if you know basically they’re talking about palliative care behind your mums back.
Tim: Yes 100%.
Patrik: Right, and that is just so inappropriate isn’t it?
Tim: I think so.
Patrik: Very inappropriate.
Tim: Oh, exactly.
Patrik: They must, look they’re just covering their worst-case scenario. Their worst-case scenario is that your mum would be stuck in there forever in the day and they don’t want that, which is why they are starting to talk about palliative care. With the ventilation, with the sprinting how long can she stay off the ventilator at one time do you know?
Tim: That’s at the first part she said that she is doing okay. Twenty minutes to that this morning. He got up straight away and said, “That’s twenty minutes.” He said “These numbers are great, I’m going to tell the doctors that we’re going to do it quicker. Every four hours.”
Patrik: Right, twenty minutes every four hours.
Tim: They wanna do fifty minutes every eight hours and it must be a way to say it’s just not worth it.
Patrik: Sure, look that would be a way of saying, yeah but in the bigger scheme of things Tim, twenty minutes every four hours or did you say fifty minutes every eight hours?
Tim: That’s what they tried to do. They tried to do it, he done up to twenty minutes and he said “Perfect.” And my mum fell asleep after that moment, because she’s running, because I’ve been doing physio getting her limbs going and her arms moving. Then physiotherapist, themselves came in, the hospital ones and done the chest up.
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Patrik: In the bigger scheme of things twenty minutes in four hours or fifty minutes in eight hours is not a lot when you’re weaning someone off the ventilator. But it’s a start, right? I think what you need to be prepared for really is to
counter the argument of palliative care. Now I’m repeating myself here but number one, your mum’s wishes is all that matters
Tim: Excuse me about this, the social worker kept saying to me “Ah well your mum will learn how to speak again.” And I asked her “If the operation goes bad and she has to learn to speak again and walk again that she didn’t want to live.” And I said “ It’s not like she’s got brain damage or something she’s gotta try if she can’t speak.”
Patrik: Well and even so, has the social worker asked your mom? She probably hasn’t. The social worker to me seems just like, full of sh** excuse my language.
Tim: Yes, true and they go around before the operation apparently and ask these questions, and mom said that. Yeah apparently that’s what they said they’d do, but people have said to my mum now, my mum would be upset, she started crying. Cause I’d be dropping little hints saying, “Mum you really gotta try and breathe and try and be strong because they want this bed mum they want you outta here.” I said “They wanna take you somewhere where
you’re just probably go to sleep.” And we worry and she’s shaking her head and I said “Mum it’s all right. You’ll be fine.”
Patrik: But also keep in mind, there could come a point where let’s just say she can stay off the ventilator for a few hours a day. There could be a point where she even might be able to talk because what happens is, when patients are off ventilation a tracheostomy they can use the speaking valve.
Tim: Oh, okay.
Patrik: Bear in mind within twenty minutes being off the ventilator you know the main focus would be on breathing at the moment. Talking is down the
line.
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Tim: Yes, and he said the heart was good, everything was good, and I asked, and I just fluked it I asked, “Who’s in charge.” And they said, “The director of ICU.” And I said, “Can I get the director of ICU at the Stamford phone number and email address and everything like that because I wanna talk to them about what’s happening here.” And he was really good this nurse, he’s the best one we’ve had yet, and he said, “What’s it about?” And I
said, “Well the future care and the plan of care and like the way, what’s going on around here.” Then I said, “What time do you finish?” Just thought I’d ask him, and he said, “Ah probably seven o’clock because we’re under staffed.”
Patrik: Like most ICU’s. You see this is the other thing Tim. This is another thing you need to know right. The ICU, ICU’s are chronically understaffed okay. Their not only pressured for beds, they’re also pressured for staff. You might actually see they have empty beds there I don’t know I’m just saying.
Tim: Yes, there is.
Patrik: They have empty beds, but the reality is they have empty beds because they have no staff.
Tim: He also said it’s a trauma hospital for this one. At Stamford and they get people from Walter Hospital Trauma and they can’t refuse trauma stuff. And they said, “We do double shifts”. he said “The money is really good. But we do double shifts. And I said, “I’m thinking okay, that paints a bit more of a picture of everything.
Patrik: Yes, yes and he’s right, they are trauma. I used to work at Prince of Whales.
Tim: Oh, okay.
Patrik: Many years ago, and Prince of Whales is not a trauma hospital. It all went to Stamford but the pressure on their beds is huge. What’s the name of the ICU director? Has he got a name?
Tim: It’s a lady and they haven’t given it to me yet, Polly or something.
Patrik: Yeah, she’s horrible.
Tim: Ah really?
Patrik: When I deal with clients, not for Intensive Care, more for consulting I come in full swing. I challenge them. They don’t like it but that’s all right you know she might be fine with you and at the moment it’s not about that it’s about your mum, it’s about taking the next steps, getting her out of ICU, getting her home. Be friendly with her if you can.
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Tim: Of course.
Patrik: If I end up talking to her I will be friendly with her don’t get me wrong. I’m not you know, and she probably won’t remember that she dealt with me in the past. You don’t need to mention who I am or whatever. Keep me out of the picture for now. (something fell) Oops, sorry.
Tim: I really, really appreciate it and I’ll get that data then I’ll text it through to you anyway and I’ll bring that s*** first thing Monday morning. I’ll bring in the GP as well. I might even text my mum the cp because I have the mobile number.
Patrik: Yup yeah.
Tim: So, I might text her today and just let her know what they’re trying to do.
Patrik: Yes. Absolutely and that’s probably good if you keep the GP in the loop. I think that’s a good idea.
Tim: She’s really good she’s positive yeah.
Patrik: That’s good. Keep the GP in the loop and also let’s just say with the palliative care you know what you gotta say. You gotta bring in the euthanasia aspect, you gotta bring in the aspect of what your mum wants, you gotta bring in the home care aspect and you gotta bring in the private ICU aspect. Get her to the private ICU.
Tim: Yeah apparently, they said that’s going to be difficult.
Patrik: Tim, here’s what’s important. In a situation like that, they’re going to be negative no matter what.
Tim: Oh yes, every little thing.
Patrik: I’ll tell you what is really important in a situation like this, persistence. Your message is not going to change. They need to know that you mean business.
Tim: Yes.
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Patrik: Just because they say no now, doesn’t mean they say no in two days. Why they say no is they know that most families are not persistent. They don’t question they just go with whatever is said. That’s 99% of the families, you’re not 99%. The difference comes from you being persistent and not being intimidated by what they are saying, that’s where the difference is.
Tim: I understand that.
Patrik: Let them say no for now, you just keep repeating what you have to say. Repetition is the mother of all skill.
Tim: Alright. I really appreciate that.
Patrik: Just be repetitive and don’t back down because eventually they will back down because they realise you are not a push over. They probably have realised by now already that you’re not a push over. But 99% of people in ICU are intimidated they don’t know any alternatives they just give in and people die because of that.
Tim: It’s terrible, I can’t believe it.
Patrik: It is terrible.
Tim: You really know your stuff I was amazed. I’m going, it’s a breath of fresh air.
Patrik: It is terrible. Your point of difference will be being persistent, not taking no for an answer and also having alternatives. Your alternatives will be having Intensive Care at Home or to buy time is going over to the private. Yes they might say it is difficult, have you asked the professor if he has admitting rights?
Tim: He doesn’t. Not anymore.
Patrik: That’s fine but, he might be able to help you, he might. As I said it’s just a matter of having options and being flexible.
Tim: Yes.
Patrik: Keep talking to him and keep your options open because he might say, “Look I haven’t got admitting rights but maybe we could get her over there with one of my colleagues.”
Tim: I really appreciate that, because it’s only been two weeks since the tracheostomy.
Patrik: Yes, that’s what I thought.
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Tim: Very early days.
Patrik: Really appreciate it Patrik, you’re a legend, your website is nice and insightful. We’ll talk tonight though definitely, and I’ll get that information to the directories.
Tim: Yes. I think that Senet, she’s got a french name Senet something Senet Thierry or something like that.
Patrik: Well done. She’s got a french name. Get that information plant the seed. Do not enter into any palliative care discussions. Always refer back to what your mum wants.
Tim: And not Euthanasia.
Patrik: Start talking about potentially euthanasia that you’re not going to have them euthanize your mom. Also ask them with palliative care, ask them have you asked my mum? Unless you have asked my mum and she confirmed that she wants to die, you’re not even going there.
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Tim: And I wanna have that conversation when I’m there.
Patrik: Absolutely yes, exactly. Alright okay you’re very welcome. We’ll talk tomorrow.
Tim: Thanks, Patrik, have a good weekend. Thank you.
Patrik: You’re welcome, bye.
Tim: Bye.
The 1:1 consulting session will continue in next week’s episode.
