How Can I Gain Control Over the ICU Team in Making Decisions for My Mom’s Care & Treatment in ICU?
Published: Thu, 08/24/23
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
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, Abby, as part of my 1:1 consulting and advocacy service! Abby’s mom is in ICU and she is asking how she can gain control over the ICU team in making decisions for her mom’s
care and treatment in ICU.
Patrik: Look, the reason I’m asking is the oncologist involved,
I’ll tell you why I think this is important. ICU strictly looks at your mom’s situation from an ICU perspective. They look at organ failure, they think the lungs are failing, the kidneys are failing, and maybe the heart is failing. I don’t have enough
information to say that, whereas the oncologist probably has a longstanding relationship with your mom. Is that fair to say?
Abby: Yes. And so has her general doctor.
Patrik: Right. So, they know your mom as a person.
Abby: Thank
you.
Patrik: That the ICU-
Abby: I agree.
Patrik: The ICU doesn’t-
Abby: I agree. They don’t know my mom as a person like they do. I agree. Thank you.
Patrik: So, they know your mom
holistically.
Abby: Yes.
Patrik: The ICU, unfortunately, just looks at her as a number.
Abby: Probably. More than likely. More than likely. Yes.
Patrik: They look at her as a number. She’s taking up a bed. We don’t know where this is going, whereas the oncologist would look at her, especially when it comes to discussions around withdrawal of treatment, when it comes to discussions around DNR (do not resuscitate), your oncologist or your
mom’s oncologist and family doctor would say, “Hang on. I know what this lady wants.”
Abby: They asked my dad today for a do not resuscitate and my dad agreed, but because we kind of made an agreement this weekend but-
Patrik: You see, this is one of the problems here. Number
1, if you change your mind tomorrow, you can ask them to reverse that. That’s number one. Number 2, ICUs are very good at telling families, “Oh, you need to make a decision by tomorrow at 12 o’clock.” I go, “So why? Why tomorrow at 12 o’clock? Why not next week at 12 o’clock? Why?” It’s like you are in control of your decision making, not the ICU.
Abby: The concern that I have is I’ve got a dad that’s very anxious, very stressed-
Patrik: I can understand that.
Abby: … and doesn’t want it to drag on indefinitely if there’s no real hope of recovery and it’s just not going to go anywhere.
Patrik: Yeah. Right.
Abby: I need to know realistically, is it really going to be going anywhere or
is my attempts futile? It’s easy… You’ve dealt with people in ICU, you probably have dealt with people where it’s not viable at all. And you know what I’m talking about and to know what I’m getting is exactly… Does that make sense?
Patrik:
100%. 100%.
Abby: I don’t want to have something go on for months if there’s no hope for recovery and she’s just a vegetable and there’s no quality of life. One of my counsellors has asked, “What is the best outcome for her?”
Patrik: The question is what… I think it’s the wrong question to ask. The right question to ask, I believe, is what’s the best outcome for your mom that would be acceptable for your mom?
Abby: Thank
you.
Patrik: That is really the question. What might be a good outcome for your neighbor may not be a good outcome for your mom or vice versa.
Abby: I agree. Everybody has their, what they want.
Patrik:
Yeah.
Abby: And it’s hard. It is nothing but anxiety. You’re sitting and waiting over the phone for 30 minutes. Every ring you’re wandering, will the hospital call? I’ve tried to tell my dad, please don’t go down there. We need to stay
away from ICU. This is a stressful place. It doesn’t do anything except cause drama. It’s hard.
Patrik: Yeah.
Abby: And everybody’s going to have their different ways of how they cope. Do you have any other questions?
Patrik: I do. I do. Do you or your dad feel under pressure that you need to make a decision about DNR
and withdrawal of treatment?
Abby: I feel like I’ve been kind of pressured.
Patrik: Okay.
Abby: I have either by my dad or by ICU. I have felt pressured.
Patrik: Who is technically the power of attorney, you or your dad?
Abby: My dad is.
Patrik: Your dad is. Are you and your dad on the same page?
Abby: Mostly, but not completely.
Patrik: Not completely.
Abby: For the most part, he’ll agree to things, but it’s been kind of a struggle.
Patrik: Yeah. Sure. Yeah. I guess the more… You see the thing is this, Abby, one could say that you keep going along with your mom, you keep treating her and there won’t be a good outcome and she’s just suffering.
That’s an option. Another option might be, you keep pushing along with your mom’s treatment, she keeps suffering, but she keeps improving. To what extent does she improve?
Those are very hypothetical questions that I don’t have the answer to. Besides, if you
don’t try, you never know. If you withdraw treatment, your mom might be gone. One piece of advice from me is really I would make decisions today that you don’t regret in 12 months’ time. Why am I saying that? We have a lot of families come to us and say, “Look, I agreed to withdrawal of treatment. I felt pressured, that the ICU U was telling me that’s the best option to let my family member die.” And then, 12 months later they have second thoughts.
Abby: And there’s guilt.
Patrik: That’s a massive, massive guilt.
Abby: And you’re making a life and death, you’re making a life decision. As I said, you met once or twice in your lifetime, you might make it with a
family member and to not do it correctly is really… I agree. I don’t want the guilt at 12 months in the future.
Patrik: And don’t get me wrong, Abby, there’s also guilt if you keep pushing and you think, or you see your mom suffering, but
she keeps alive by machines and there could also be guilt because you think where’s this going? It’s very hard to make decisions in those situations. Very hard.
Abby: Yeah. I agree. And that’s what so hard about it.
Patrik: It’s very hard. We have a client at the moment, she’s much younger than your mom, but she’s been in ICU now for three months. She’s much younger, but she’s suffering. She’s suffering. No question. But she’s 35. And what do you do with a
35-year-old woman?
Abby: That’s younger than I am.
Patrik: Do you let her die because she’s suffering? She’s 35. She’s got three young kids.
Abby: Oh, God.
Patrik: Those are all questions that I don’t have the answer to. I can only say to families, “Make the decisions that you don’t regret it in 12-months-time.” Because I don’t have the answers to, I know what treatment might work, but there’s no guarantee. And it might just prolong the suffering
and it might just prolong the inevitable. We don’t know. But she may also survive. I don’t know.
I’ve seen patients in ICU, Abby, that should have lived but died. And I’ve seen patients in ICU that should have died but lived.
Abby: Yeah.
Patrik: Sometimes we have to leave it up to the creator or whatever people believe in or do not believe in.
I’m not here to tell people what to believe in, but I have seen 90-year-old patients where the prognosis was so poor, and they went out of ICU alive. I have seen 19-year-old patients, their prognosis was reasonably good, and they died. It’s so unpredictable.
Abby: Yes.
Patrik: Abby, we are at the 30-minute mark. Do you want to save the other 30 minutes for me to make phone calls?
Abby: I’d like to save the other 30 minutes right now for phone calls. I’m going to provide numbers for you and then I’d like to set up a second meeting in a day or two.
Patrik: Yeah. Let’s do that. I’ll wait to hear from you.
Abby: I think that’d be the best option. Thanks… Okay. Can I… Give me a second.
Abby: This is the number of the ICU. It’ll be a general line and then you could
transfer.
Patrik: Okay. And they know that I’m calling?
Abby: No, they don’t yet.
Patrik: So here is how I recommend how you introduce me there. I recommend you introduce me as a family friend that’s an ICU
nurse by background and that’s helping you to understand what’s happening. That’s how I recommend you introduce me there. It’s got to be non-threatening to them.
Abby: Okay. Because they weren’t really willing to talk to you perhaps, but I
had a… I’m going to have you try first and then see what happens.
Patrik: Okay. Yeah. I recommend this is the best way to go about it. You have every right to bring in someone that can ask questions. Now-
Abby: I’ve had another doctor from my family bring in and ask questions, could you just try to go ahead and make the call? I would appreciate it.
Patrik: Yeah. Do you think there’s a particularly good time?
Abby: Not that I can think of. You
can call and ask and do what you have to do, either speak with the nurses or doctors there. It doesn’t matter.
Patrik: Yeah. Yeah. Sure. I get that. All right. And if I have another suggestion, if for whatever reason they wouldn’t talk to
me, my other suggestion is that you and I call them together because then you could verify me, but I’m happy-
Abby: If it goes that way, then let me know and I will call together with you.
Patrik: Yeah. Let’s do that.
Abby: Okay, I’ll set it up.
Patrik: Yeah. Okay. All right. So, let me know when you’ve cleared me there and I can call then.
Abby: You can call anytime today, this evening. Anytime you feel like it.
Patrik: Okay. So, they expect my call?
Abby: Yeah.
Patrik: Okay. All right. And what did you tell them who I am?
Abby: My dad did tell that a neutral party might be
calling.
Patrik: Okay. That’s good. And do you know what their response was to that?
Abby: They didn’t like it.
Patrik: Okay.
Abby: They weren’t at all… They thought you were an internet person.
Patrik:
Which I might be.
Abby: Which you’re not. You’ve been doing this for 30 years, 20-
Patrik: Oh, yeah. Look, I’ve been doing it online for the last 10 years, but-
Abby: Oh, please. Yeah. I could tell your background,
please. Thank you.
Patrik: No. That’s fine. Okay. Look, what I’ll do is I’ll call them, and I’ll get back to you.
Abby: When can I set up a time to talk to you again or a second meeting? I need a little more time.
Patrik: Yeah. Yeah. Sure. Can we do the following? Can I get information first? Because I’m not entirely sure. Look, I might call them now and I might have information straight away. Great. And then, I can get back to you. I think it would be advantageous for our next call if I had as much information as possible. So let me get information, and then I’ll reach out to you, and I’ll say, “Well, hey, we can do the same time tomorrow or we can
do-”
Abby: Can I do the same time tomorrow, maybe at seven o’clock tomorrow?
Patrik: Let me just have a quick look at my calendar. Just bear with me. Yes. We should be able to make the same time tomorrow. I would think by then I would have spoken to them.
Abby: Thank you.
Patrik: I’ll get back to you as soon as I’ve spoken to the ICU. I’ll reach out to you.
Abby: And then, if you need to call the cancer doctors or my general doctors, let me know and I can provide those numbers.
Patrik: Sure. Sure. Okay. All right. And what I would try, and this is up to you, when I speak to them, I will try and record the call. They wouldn’t know, but that’ll give you insights of what I’m asking them.
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