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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 Natasha whose father passed away in the ICU and eager to know exactly the cause of death of her father while he was a dying patient in the ICU.
My Dad had a poor prognosis and was dying in ICU? Why was the ICU team so disrespectful?
“You can also check out previous 1:1 consulting and advocacy sessions with me”
Natasha: Psychological basis.
Patrik: They haven’t face their own mortality. Now they’ve got the stressed family member at the bedside who wants to know about this, this and this. Even though some of the doctors and the nurses haven’t faced their own mortality they know that his patient is probably dying. They know that but they have found no avenue to talk to you about this. They haven’t because they’re not mature enough to have to sit down with you, just want you wanted to sit down with you. Now, if somebody had come to you like … Your dad died on the 8th of April. If somebody had come to you on the 5th of April, somebody who is mature, who has experience, who can relate to people on an emotional level and have said to you hey Natasha we need to sit down and we need to work out what the options are for your dad. They would have laid out all the options but they would have also said look we could go down that path but we think it’s probably not going to help your dad. If somebody had explained to you what we’re debriefing now in a mature way you probably would have taken that in but that hasn’t happened.
Natasha: You see the thing is is that I didn’t even need that talk and in the notes it shows it’s true, the fact that my father could die, my father is terminally ill. Because he suffered that brain injury. At some point he could die from aspiration pneumonia, that could happen to a person who has aspiration pneumonia. There’s that risk and I always know that, that can happen. That was not my concern so anytime he gets hospitalized someone with his brain injury and with his lung condition that … He has that risk and I always know that risk is there. They’re acting like I think that my father is invincible and I’ve never said that. I don’t know why they think that I have an unrealistic expectation. My thing was you have to give him that aggressive treatment in order to give him that chance to make it out alive. Whether he lives for another two months, that is progress for us. They see it as, if he gets another infection then that is not appropriate, that is not a good quality of life. He’s going to come out of here and he’s still in a minimally conscious state to us.
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Natasha: We don’t think it’s appropriate to allow him to just live another two months giving him these aggressive treatments. That is how I feel that that’s how they were thinking. They think that he should have … That they shouldn’t give him treatment and see him live a long time.
Patrik: That is how they’re thinking. That’s exactly how they’re thinking. Most families don’t understand how they’re thinking and also most are ICUs don’t understand how families are thinking. They just look at your dad as a number. They look at him as a diagnosis and they think, okay well with his diagnosis, he has a poor prognosis and therefore he shouldn’t live another two months it’s a burden for him. That’s how they think but that’s not how families think. Of course not.
Natasha: Yeah, so when they say poor prognosis do you mean that he’s going to just die or do you mean poor prognosis where he’ll only have a couple more months. But every single month is a blessing. That’s not your call.
Patrik: No, of course but they make it they’re call, that’s the problem they make it they’re call. When I say poor prognosis that could mean two things. Poor prognosis could mean they think he’s only going to live another couple of months or it could mean his going to live for another couple of months with a perceived poor quality of life.
Natasha: The tracheostomy and-
Patrik: Correct. We’re talking about perceptions here that’s all what we’re talking about. We’re talking about their perception of poor prognosis, poor quality of life versus your perception of, hey I want my dad around it doesn’t matter if he’s got a poor quality of life. I want him with the trachea … I want him to be here, so we’re talking about different priorities.
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Natasha: Yeah and that’s just basically … Do you have a little more time? No, do you-
Patrik: We’ve got about another 10 minutes.
Natasha: Okay, what’s interesting is that, when I was reading some of the notes and how they’re making fun of me. They would make fun of my-
Patrik: That’s terrible.
Natasha: They were so mean. There was a comment by Dr. Sharma the intensivist which I got … I think this was my mistake too. I just got rid of the first intensivist because of how he was behaving towards me and I should have not done that I should have just stuck with him because I feel like maybe that also has something to do with how they behaved towards me. He was the one who started with all these end-of-life making fun of my spiritual beliefs and I don’t know.
Patrik: Really?
Natasha: But in any case.
Patrik: Oh my goodness that is so inappropriate. I tell you what I believe needs to happen in the end of life situation. Number one, people need to be open and transparently informed and then the next question is if that is inevitable then the questions need to be raised. Okay, what’s your dad’s cultural spiritual religious needs if any or what are your cultural spiritual religious needs if any. That’s a question … To me Natasha is another sign that the people you were dealing with they haven’t faced their own mortality.
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Natasha: They were very disrespectful towards that.
Patrik: Very disrespectful.
Natasha: You know what he said, he wrote in his notes about how the daughter is talking about her sprained ankle to her father … In the notes they wrote this. The daughter is talking about her sprained ankle to her father. We don’t believe that she understands the seriousness of her father’s prognosis. They wrote that somewhere in the notes and they juxtapose it with me having a casual conversation with my dad. I was talking to him, while he’s he’s not verbal he’s like..
Patrik: Yeah.
Natasha: Because I’m trying to comfort him with my voice, I’m not talking about death and doom so I’m telling him bubba, I sprained my ankle.
Patrik: This is very disrespectful what they’re doing, very disrespectful. They shouldn’t put a judgment on what you’re telling your dad. This is so inappropriate I think.
Natasha: It was throughout, go ahead, I’m sorry.
Patrik: They even made time to document that? Sorry I just think its inappropriate.
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Natasha: Even throughout just when I was … I don’t know, do you follow any religious tradition or you’re-
Patrik: I wouldn’t consider myself catholic or protestant or any of that even though I was brought up protestant but I do believe in a higher order, in a higher authority. I do strongly believe in that but I don’t have a name for that. Whether call it God or something else.
Natasha: Okay, the particular religious tradition. I don’t know how you feel about religion so the religion that we want to and I was saying prayers to my dad and stuff. One night was like, “You think that’s going to help him?”
Patrik: Are you serious, oh my goodness that is so inappropriate. I don’t have any feels about religion but what I do feel is that whatever family’s want in a situation like that needs to be respected, that’s how I feel like. It doesn’t matter to me whether people are Catholic Protestant, Muslims or Hindi it doesn’t matter. To me it’s all about the individual. That is so inappropriate, that is so inappropriate. They haven’t offered you and your family anything in relation to religious spiritual cultural needs, nothing they were basically making fun of you?
Natasha: Yeah and then the fact that I was there the whole time. This the funny thing, the palliative care team are acting like they’re all interested with that. They never … We’re Catholic so they like is there any way we can help you? I was like can you find a priest just to come do some prayers for my dad. Because he never really … He didn’t really go to church too much, if you can find someone to just come we could do prayers you don’t have to have someone do it. She said she would, she never did. I just called someone myself. They just had that women coming there just to convince me … You know what I mean? To just convince me to what?
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Patrik: To what.
Natasha: With my dad about … To convince me about what they’re doing to my dad and wasn’t there to really comfort me.
Patrik: I see.
Natasha: Do you know what I’m saying? You know what I’m saying so she didn’t even do that she didn’t even get an Imam from me.
Patrik: It was a hospital representative?
Natasha: She was a part of palliative care team. She was a nurse.
Patrik: That’s terrible.
Natasha: She’s like, is there anything I can do or can you just find an Imam, there’s a lot of mosques around here can you just go and do it. She never did it.
Patrik: I’m shocked an absolutely shocked Natasha. End-of-life care is making sure that not only other families informed which number one hasn’t happened and number two, that all spiritual cultural or religious needs are being met. I’m absolutely shocked. That is just so inappropriate. That’s nurse, who is a palliative care nurse she should be sucked. She is not in the right profession.
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Natasha: Just all that and then they would make fun of me for being there with my dad. Like are you ever going to go home and have someone else … One nurse, she was like, “Are you ever going to go home and take a shower and have other family members come?” One of the doctors was like shouldn’t … He reprimanded me, he was like-
Patrik: My goodness Natasha that is just horrible. I’m so sorry to … I know that this experience has been very horrible for you.
Natasha: I’ll let you go.
Patrik: But this is just talking in this is almost like … It’s bad enough that they hadn’t been open and transparent with you in terms of what’s been happening and that they’ve probably made some clinical mistakes that’s bad enough but that treatment on a … What’s the word personal/respect that’s just … What a disgrace.
Natasha: One of the attendings that are part of a group. One of the attendings, Dr Sharma, yeah that’s what his name was. I was sleeping over. My dad could die right so of course I want to be with him 24 hours a day. I was on the recliner. Of course I’m going to be a little bit dishevelled a little, so I was sleeping over at the hospital I’m on the recliner. He comes in and he’s like, “What are you doing sleeping over in the hospital you’re not supposed to sleep in the hospital, you go home and you sleep. Literally just like that.
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Patrik: That’s so inappropriate. The problem in ICUs is and anybody who’s looking after a patient in ICU whether it’s a doctor or a nurse, we don’t know these people outside of the ICU stay and that’s a big challenge. We see them as sick people. We have no idea what that person was doing 24 hours maybe before the ICU admission or a week before the ICU. We have no concept of that, which is a big challenge. If we would know those people as healthy people we would look at them very differently. We only look at them as a sick person but we don’t know them as people really which is a big challenge.
Natasha: It’s really interesting because it’s like on one hand they’re making fun of me because I’m having a casual conversation just so my dad can recognize my presence because the hearing doesn’t go, neurologist do that too. You should always be talking to a patient because they can hear you but you don’t know what they can hear.
Patrik: Exactly.
Natasha: It’s comfort care. Hospice nurses will tell you that too, even when the patient is dying talk to them, let them know your voice.
Patrik: Then even if they can’t hear it doesn’t matter, it’s a normal human interaction. Whether they can or the can’t it’s just a normal human interaction.
Natasha: You don’t know what they can hear or not so you want to keep doing it and especially when a person has a brain injury, the neurologist say this too, you have to make them familiar with you. They’re making fun of me because they think that I’m not taking him seriously but then when I’m there 24 hours a day because he may … That’s me taking it seriously because I know that this is really serious and if his heart stops or his lungs go or something happens I don’t want to not be there and that’s me taking him … They’re saying on one hand I’m not taking him seriously because I’m casually giggling with him but then on the other hand they want to keep me out of the hospital. That’s me taking it seriously because I would not be there 24 hours a day if I didn’t think there’s a strong chance he could pass away.
Patrik: That’s right. You knew it in your heart that this was happening?
Natasha: Yeah he could.
Patrik: As I said for my perspective Natasha and I have worked in some intensive care units where the culture was so bad. Where the people-
Natasha: You did?
Patrik: My goodness. They hadn’t faced their own mortality and that’s when most ICUs can grow up if you will. Once you have most people there having faced their own mortality, the conversation changes from putting pressure on people to compassion.
Natasha: Have you seen ICU that bad though? That bad.
Patrik: Yes I have.
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Natasha: Really?
Patrik: Yeah absolutely. My very first ICU that I worked in, was probably that bad and others too. The one that I’m working at the moment is pretty good, they have pretty high standards … The reason I keep working there is that I like it. I like the people working there and I get the shift that I want and there’s a high acuity which I need because I’m not there. I’m removing myself from ICU slowly but surely but there’s a high acuity of patients. It’s good for me to keep my skills given that I’m not there that often.
Natasha: Don’t people complain? Why don’t they change it in the hospitals?
Patrik: Why don’t they change? Because number one people like you are rare.
Natasha: Really?
Patrik: I see a lot of those people because they’re all coming to my website and then they eventually start talking to me, I see a lot of those people but they’re still rare. I have said in many of my blog posts that 99% of people ICU, families they don’t question. They just nod everything of that they’re being told, they don’t question. I talk to people like you all the time because you are the few that asks questions and you are the few that do not put up with what’s happening. Those people are far and few so that’s one of the problems that families don’t question. There’s still this fear of authority, fear of the doctors and fear of the nurses and fear of the whole organization, hospital.
Natasha: Yeah, people don’t complain afterwards. A lot of people don’t do that. They don’t take-
Patrik: That’s right and another … I keep coming back to what’s happening on a deep psychological level. I believe what’s happening on a deep psychological level as well, even though people might have the sense that they’re being mistreated on a personal level they still to a degree feel gratitude towards the hospital for looking after the love one. Because they can’t put in perspective well is what they’re doing right is it wrong, is there something else they could be doing? They can’t see that. Because they can’t see they still on a deep psychological level feel a sense of gratitude towards hospitals. I’ll tell you why, I’ll give you a quick example and then I need to go. I’ll give you a very quick example why I believe that’s the case. I’ve been in hundreds of family meetings in ICU where families get told we’ve got to stop treatment for your loved one and your loved one will die because it’s, “In the best interest for your loved one to stop treatment.”
What families don’t question, they’re overwhelmed, they take it in and even though they might be devastated, the next thing they say is thanks for everything that you’re doing. I’ve been so frustrated by this over the years where I just think hang on you family you have no idea what’s happening here. Which is one of the reasons why I’m doing what I’m doing. Because I have seen this over and over again. Families get told, yeah we’ve got to stop treatment, it’s “in the best interest for your loved one.” It’s bullshit, it’s in the best interest of the hospital. Families don’t know that and they don’t question. The next thing they say in tears is thank you for everything that you’re doing.
Natasha: My God.
Patrik: Yes, so they feel gratitude on a deep psychological level and they’re too scared, they’re too overwhelmed to question. They’re too scared doing their own research which is what I believe my website is there for, people can do their own research, they can get a different perspective. This is a big, big issue.
Natasha: My God. That’s horrible.
Patrik: It is and people like you are rare, you haven’t felt that gratitude which I think is great.
Natasha: No way.
Patrik: You’ve sensed something is not right, you’ve sensed it from the start.
Natasha: Of course. That’s really bad and sad.
Patrik: It’s very bad. I was in a family meeting on Saturday with this patient that I looked after and it was exactly the same at the end of the family meeting the family said thank you for everything you’re doing.
Natasha: Get out of here.
Patrik: Look this patient is going to die, there is no cure for this patient, don’t get me wrong but I could just see that even if the patient wasn’t dying they would have said the same.
Natasha: Amicably I told them all how they’re horrible and how the other hospitals were perfect and how you guys are all crap.
Patrik: That’s okay, they need to hear it.
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Natasha: That’s so funny.
Patrik: All right, Natasha I need to go to the next consulting call. Do you have any idea yet how you want to proceed with the notes?
Natasha: Yeah, so I’m going to continue going over this because I’m still … I’m not halfway through and then I’m going to get the films and I’m going to see … I do want to file … You know I want to do something with this and have you look it over.
Patrik: Yeah have a look, yeah. When you’re ready.
Natasha: When I’m ready and looking over and I have to go over it again to write some notes, so you can have everything clear.
Patrik: Yeah sure.
Natasha: All right let’s do that.
Patrik: You take care.
Natasha: All right, I’ll talk to you later. Thank you.
Patrik: Take care, all the best. You’re welcome. Bye, bye.
“Thank you very much for being a part of the previous series of 1:1 consulting and advocacy sessions. We hope you will find these new upcoming episodes informative and empowering.
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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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