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
The ICU Team is Doing Brain Death Testing to my Wife. Why are They Aiming for Withdrawal of Treatment Even Before the Test is Completed?
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 Francis as part of my 1:1 consulting and advocacy service! Francis’ wife
had a brain death test in ICU and is asking why the ICU team did that without his consent.
My Wife Had a Brain Death Test in the ICU. Why Did They Do That Without my Consent?
Sam: There was another nurse.
Francis: She was a nurse, as well?
Sam: She was a nurse, but she was over the other two.
Francis: She was over the nurse practitioner. I think she was a physician.
Sam: Yeah. I think so.
Patrik: You need to find out who these people are. You need to find out who these people are, and you need to find out what their qualifications are.
Francis: Okay.
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Patrik: Things like that need to be done by senior people there. I mean, they’re life or death decisions. They’re life or death situations.
Did you have to sign consent for that testing?
Francis: No, because I told her, “What if I wanted to refuse it, and then I wanted to refuse that again?” She said that was an option.
Patrik: Okay. And that’s why you need to get the policy. Because there’s a very good chance that in the policy for brain death testing, it actually says that you need to give consent. You need to get that policy.
Which hospital is your wife at? Can you tell me the name of the hospital?
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Francis: Yes. Saving Grace.
Patrik: Saving Grace? Yep.
Francis: Yep. And it’s in Minnesota.
Patrik: Whereabouts in?
Francis: Saint Paul, Minnesota.
Patrik: Oh, Minnesota. In Saint Paul, Minnesota. Sure. Yep. Okay. Just give me one sec. How big is this ICU? How many beds are in this ICU? Do you know?
Francis: Yes. I think I saw yesterday that it said that they had … Let me see if it’s on the paper.
Patrik: How many?
Francis: I think they had 60, I think.
Patrik: 60?
Francis: I think.
Speaker 3: Look at the …
Francis: Sure. Yeah, I’m not sure.
Patrik: Okay.
Francis: Coz I didn’t look for the information as you told me.
Patrik: Yeah. No. No. Are they busy?
Francis: They’re pretty busy.
Patrik: Okay.
Francis: Maybe I’m not a utilitarian.
Patrik: The reason I’m asking all of that is really … Do they need the bed? For me to understand this 100%, they didn’t do the brain death testing last week simply because they waited for your wife’s kidneys to recover. Is that correct?
Francis: They wanted to clear all of the toxins that were in her body.
Patrik: And they put her on dialysis for that?
Francis: Yes.
Patrik: Okay. When did they stop the dialysis?
Francis: They haven’t stopped it.
Patrik: They haven’t stopped it yet. Okay. Has there been any talk about organ donation?
Francis: No, but I did see some paperwork up there.
Patrik: So, you think that is the next step that could happen?
Francis: Yeah.
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Patrik: Right. That is often what happens. Once the patient is declared brain dead, they pretty much want to harvest organs. That would be once that brain death testing has been confirmed, that your wife is potentially brain dead, they would ask you whether you would want to donate organs. They’re all lining it up.
In the meantime, there is a number of things you need to do. We need to ask for the withdrawal of treatment policy, and we need to ask for the brain death testing policy. Now, I’m just on their website, and I’m just looking up …
Sometimes hospitals are publishing their policies online, and I’m just having a look. So far, I haven’t been able to find something, but I’m looking as we speak.
And if I can’t find something now, I will have a look after we come off this call.
What is your line of action at the moment? So, for you, it’s like 10 P.M., 9:30 P.M. at night. Are you at the hospital, at the moment? Are you going…
Francis: No, I’m at home.
Patrik: You’re at home. What is your plan? Are you going back tomorrow?
Francis: Yes, I’m going back.
Patrik: Right. So, you’re not planning to go back tonight?
Francis: Yes. We’re actually going back tonight. We’re going back at 1:00.
Patrik: Okay. You need to ask for those policies tonight, and you need to ask for the medical records tonight. There is-
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Francis: I did. I asked them. Every time I ask them, they say that they cannot give them to me, as far as the medical records, until my wife is discharged.
Patrik: No. No. That’s absolute bull, excuse my language. That’s absolute bull.
You are the medical power of attorney. They’re just making life difficult for you because they know you’re going to challenge them. You, as the medical power of attorney for your wife have every right to get those medical records, at any time.
Do you know? Are they using electronic records or are they using paper-based records? Do you know?
Francis: I’ve seen papers, and I’ve seen them on the computer so I-
Patrik: Both. Okay. Okay. Let me ask you another question. In this time when your wife has been in hospital, besides the nurse practitioner talking to you, there have been no formal meetings with the doctors? That hasn’t happened?
Francis: There has been one, and that one was after we objected.
Patrik: Say that again. That was?
Francis: That was one, after I spoke to you, and I objected to the…done
Patrik: Okay. I see. Okay. I think we need to do a few things. We need to ask for the policies. We need to ask for the medical records, and if for whatever reason, that doesn’t work, you need to threaten them with legal action. Whether you’re going to do that or not, that’s a different story. But you need to threaten them with legal action. Otherwise, they’ll just do whatever they do.
Have you spoken to anybody outside of intensive care, in terms of-
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Francis: Yes. Today I spoke to the patient advocate and a case manager to try to get the transfer. She’s the one who attempted-
Patrik: Yep. What was their response? The response was what you told me earlier that they can’t do it.
Francis: Right.
Patrik: Okay. Okay. When you’re going back to hospital there a bit later today, have you been spending some nights in hospital over the last few days/weeks?
Francis: Yes. Every night.
Patrik: Right. Right. When you’re going there overnight, are there any senior doctors there?
Francis: Never. So they only have doctors in the daytime and between certain hours.
Patrik: What?
Francis: Yeah. Other than that, there’s a nurse practitioner, and the rest run the hospital.
Patrik: Right. What time is that brain death testing happening tomorrow?
Francis: They say it’s gonna happen in the afternoon.
Patrik: So that gives us a little bit of time, a little bit. Okay. For now, all we need to do, Francis, is you need to ask for those policies, and you need to ask for the medical records. That’s all we need to do for now. There’s nothing else that needs to be done, and you need to tell them, in no uncertain term, that you have not approved for the brain death testing. And that you need to approve this, as the medical power of
attorney.
Now, what I will do in the meantime … I will send you an e-mail with just those simple steps. What I will do, in the meantime, is I will have a look … I’m still on their website. I can’t find any policies, or let’s put it that way, I can’t find any medical policies.
What I’m also doing is I will have a look what’s happening with … You’re in Minnesota. What’s happening there on a legislation level, in terms of, withdrawal of treatment as well as brain death testing? ‘Cause there’s often some state laws around
that, that could change the situation very quickly in your favour.
And you should also use any objection on religious grounds, as well. You should use that.
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Francis: Okay.
Sam: So, what’s the plan?
Patrik: Let me think.
Francis: What about the fact that I have already done one brain test? I can still object to the second?
Patrik: I mean, it’s crystal clear that you haven’t approved to this. That’s a given.
You have not approved the first brain death testing. You have objected it for the last week. Is that correct?
Francis: Yes. But then today when they came in, after we couldn’t get her transferred, they came back and said they were going to do it. And, you know, I didn’t stop ’em.
Patrik: Yeah. Something you should have done, but that’s okay. That’s okay. It’s not too late. Let’s do that to begin with. There’s nothing else we need to do for now. You need to ask for those policies, and you need to let them know you are not going to approve the second round of brain death testing before you have policies, before you have access to the medical records, and before you have a meeting with the lead consultant.
Because what really concerns me here … The nurse practitioner is talking to you, but she’s just the messenger. And there’s people pulling the strings in the background, right? That you have no idea who those people are.
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Francis: The only thing they agreed to was to do an EEG tomorrow. They said they would do that.
Patrik: Have they done an EEG to this point?
Francis: They have, but they hadn’t done one after the toxins had cleared her system.
Patrik: Do you know the result of the first EEG scan?
Francis: Not exactly. They just said it wasn’t good.
Patrik: Put that on your list, Francis. You need to get the results in writing. You are not going to agree to anything before you’ve got that EEG result in writing.
You know, again, that’s part of the medical records.
What about CAT scan or MRI scan of the brain done?
Francis: I think when we first got here. I think when we first got here.
Patrik: Just when she got to the hospital. Nothing since then?
Francis: No.
Patrik: Okay. Was that a CT scan or was it an MRI scan of the brain? Do you know?
Francis: No, I don’t.
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Patrik: Okay. Number one, you need to find out whether she’s had a CT scan or an MRI scan of the brain. So, I would imagine you haven’t seen the result there either, have you?
Francis: No.
Patrik: Okay. Put that on your list, as well. They’re withholding critical information from you. They are withholding critical information from you which is why you need to have access to the medical records, and you have every right to do so.
Do you think the people you’ve spoken to, the liaison people? Do you think they are supportive of what you are trying to achieve or do you think they’re, again, they’re just employees of the hospital and they will just do whatever the hospital will ask them to do?
Francis: I think that they would do what the hospital asked of them, pretty much.
Patrik: Okay. All right. That’s okay. What we need to do is we need to focus on the things that we’ve discussed. There’s nothing else that you need to do, at this point in time. I will slick you an e-mail with everything that we’ve discussed now. I will send you a recording of this phone call. If you think you’re not getting anywhere with this, we need to talk with the doctors. You need to request an urgent meeting with the lead doctor. Stop
talking to that nurse practitioner. She’s just the messenger. Tell her that she’s not qualified to make all these decisions. Get her off your back. Get in front of different people.
Francis: So then I am trying to get in contact with the lead physician?
Patrik: Absolutely. Absolutely. She’s just a messenger. There’s somebody pulling the strings in the background, and you need to find out who that is. And you need to talk to them, or we need to talk to them. But for now, for now, ask for those policies. Ask for the medical records, including the CAT scan and the EEG results, and tell them that you are not approving for the second brain death test to go ahead until you’ve had all of the documents that you’re asking for.
And also, when you’re asking for the policies, ask with a deadline. What do I mean by that? Ask, you know, you want access to the medical records to the policies by 8:00 A.M. tomorrow morning. Put them under pressure. Change the way you communicate with them. And I’m sure you have already, but this is like … I can tell you that nine times out of ten, asking for the policies is working because there’s a very, very good chance they’re breaching their own
policies.
You also need to start using stronger language. You need to tell them that if they are doing things without your consent, and your wife is going to pass away as a result of them doing things without your consent, that it’s murder. You need to start using stronger language.
Francis: Okay.
Speaker 3: He is going to die?
Patrik: You have not accused them, at this point in time, that they are going to kill your wife. You have not used that language, have you?
Francis: No.
Patrik: You need to start using stronger language. Are there any other people in this unit that you’ve come in contact with? Other families that are going through a similar situation?
Francis: Yes.
Patrik: And do they feel the same about their loved one’s situation than you do or do they have-
Francis: Yes.
Patrik: They do.
Francis: They do, but they’re kind of just going along with it.
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Patrik: Right. Right. Okay. Okay. Does that make sense to this point?
Francis: Yes. It does.
Patrik: Okay. What I’ll do, Francis, is I will send you an e-mail with a very quick summary. So you are saying you are getting the e-mails now?
Francis: Yes.
Patrik: Okay. Okay. Great. And what’s important in a situation like that, Francis, keep things simple. Just keep asking for the things that we discussed. Be very clear and non-ambiguous in your communication. Start using stronger language, right? And make sure that they can’t go ahead tomorrow with this testing, by you asking for the things that we discussed. You need to demand a meeting with the lead consultant. Get that
nurse practitioner off your back. She’s just a messenger.
She’s just smothering you, by the sounds of things.
Francis: Okay.
Patrik: I will send you the summary. And once you’re in hospital, maybe give me another call, and then we’ll see where it leads. But you need to ask for those things.
Francis: I will.
Patrik: Okay. And I will have a bit of a look what’s happening in Minnesota online, in terms of end-of-life decision making, outside of hospital, which means on a legislation level. Because that could often be the answer, in and of itself. If the law says something about that they can’t withdraw treatment without your consent, which it probably does, and you put that in front of them, they will stop whatever they are doing. The reality’s they will try and walk all over people because people don’t question.
But the first things you need to do is you need to ask for those policies.
Francis: Okay. I will.
Patrik: I will send you an e-mail, in a moment. And please, let me know how you get on with this. And then, once you get to the meeting tomorrow, I will be there for sure over the phone. But if you need something prior to that, please give me a call.
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Francis: I will. Thank you very much.
Patrik: You’re very welcome. All the best, for now.
Francis: Okay. Bye-bye.
Patrik: Bye-bye.
The 1:1 consulting session will continue in next week’s episode.
