Can The Doctors Force Us to Consent at The Same Time for Tracheostomy & PEG for My Mom in ICU?
Published: Sat, 06/03/23
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, Lloyd, as part of my 1:1 consulting and advocacy service! Lloyd’s mom is in the ICU and he is
not ready to give PEG consent for his mom. Lloyd is asking, can the doctors force them to consent at the same time for tracheostomy and PEG for his mom.
Lloyd: Hi Patrik! They cancelled the tracheostomy today, and they moved it to Friday.
Patrik: Yes, I saw that.
Lloyd: And I have a sneaky suspicion that she did that as a retaliatory kind of thing. And she’s not playing nicely. And I don’t know what our options are now.
Patrik: When you say she, is she the ICU doctor?
Lloyd: Yes, the attending.
Patrik: Right. She’s not the director of the place, of the ICU.
Lloyd: No. Today she called me, and she said that she spoke to kind of the head of the ICU. And that doctor said that my mom needs to get a PEG and that there’s no way around it. She needs to get a PEG (Percutaneous Endoscopic Gastrostomy).
Patrik: Okay. The PEG, have
you signed consent for it? The tracheostomy, have you signed a piece of paper for consent?
Patrik: Okay. You have signed a piece of paper for the trach?
Lloyd: Yeah.
Patrik: Okay, great.
Lloyd: And I signed it this morning and the doctor who had me sign it said the surgery would be today. And he said that it would be later today.
Patrik: Right. The surgery, do you know whether it’s planned to be with an ENT (Ear, Nose, Throat) surgeon and in ICU?
Lloyd: Yeah. And the ENT team came. They gave us the risks and they gave us
all the information in terms of what the risks are. And then the doctor that had me sign the consent form this morning, he’s one of the ENT people on that team. And they were going to do it in the room. They said they do it in the ICU. So, it wasn’t like she was going to go anywhere. It’s not that invasive.
Patrik: Well, in the UK and in Australia, most tracheostomies are now done at the bedside by the ICU consultants. But it’s not a surgical procedure. It’s like they’re basically poking a hole in the trachea and inserting the tracheostomy tube. It’s a minor surgical procedure.
Lloyd: Yeah, that’s what they were going to do here.
Patrik: Right, okay. So, she’s not going to the operating room then?
Lloyd: No, no. It was good. It’s going to be in the room that she’s in. But again, now they said Friday morning. And I think they were going to send
the GI (gastrointestinal) team again to talk to us. But the funny thing is, the doctor that gave us the risks for the GI, she actually posted notes in the portal that basically says, “Family prefer for trach first. Please re-consult if still want PEG and CW/GOC (consistent with goal of care).” So, she was fine. The GNT (Gastroenterology) doctor that we spoke to seemed like she was seasoned. She was like, “No, it’s not urgent. You know, could go ahead and do the trach.
Patrik: 100%.
Lloyd: The PEG. She was like… a couple of weeks, no problem, whatever.” So, she was totally on board with it. And now this doctor said that she was going to have another doctor come and speak to us tomorrow about trying to get
consent.
Patrik: Okay. I’ll give you, my thoughts. The delay of the tracheostomy in a busy hospital could just simply be a delay of the tracheostomy because of emergencies happening. I wouldn’t read too much into it for now, unless they have told you in no uncertain terms that they’re delaying the tracheostomy because
they’re waiting for you to give consent to a PEG. Have they said it in those words?
Lloyd: Well, she said… Yeah. She basically said at
first this morning, she was like, “We’re not doing the trach without the PEG.” And then I said, “What do you mean? Are you refusing care?” She goes, “That’s not what I’m saying.” I said, “But you’re saying you’re not doing the trach unless we consent to the PEG.” And she said, “They’re done together and we’re going to do it as soon as it’s safe. We’re going to do the PEG.” And I was like, “Well, I have to reach out to my siblings and we’re going to discuss this. We just want to do the trach
right now because that’s our main concern and of urgency. And we want to see how she is and then we’ll discuss the PEG.” And she wasn’t having it. She was really belligerent. She wasn’t having it.
Patrik: Yep, okay. So, what I’ll do next is… Well, I believe this is clearly a medical negligence, especially since she
told you what her reasons are. I will send you a guide about medical decision making.
Lloyd: Yeah. Yes.
Patrik: So clearly,
it’s not up to them. It’s clearly up to you to make decisions.
Lloyd: But she basically said that they would be medically negligent if they didn’t do the PEG.
Patrik: Unbelievable. Unbelievable. I’m very happy to talk to her. But you can let her know if you want to. I mean, I’m happy to talk to her, but in the meantime, I believe you can confidently say to her that you’ve done your research and you are well aware that there’s patients in ICU for six to 12 months with the nasogastric tube without any issues.
Lloyd: Okay. And that’s not
going to fly with her.
Patrik: No, of course not.
Lloyd: I can say it.
Patrik: Of course not. And look, it’s up to you whether you do want to say it to her or not. In the meantime, I would just refer back to your authority as a decision maker to make decisions. Your decision is to do a trach, but not a PEG.
Lloyd: But what I think is happening now, I’m worried that she’s going to further, I think what she’s doing is she’s putting us up against the wall. She’s forcing us to make a decision because she’s delaying it to a point where we can’t delay it anymore.
Patrik: Yeah, I
hear you. Okay. Next step then is the following, next step is for you to make a formal complaint. And if you make a formal complaint, I would go pretty quickly up to a hospital CEO or general manager level. The reason I am saying this is because I have worked on an executive level in hospitals. The hospital executives, whether that’s a general manager or a director of nursing, often have no idea what’s happening on a ground level. The only way they know what’s happening on a ground level, if
someone is reporting to them. Well, often the doctors or the nurses are not reporting to them. They often only hear what’s happening on a ground level if families are making complaints. And from my experience, a hospital general manager or director of nursing cannot ignore the complaint of a family. They can’t.
Lloyd: So, it’s a general manager or what was the nursing?
Patrik: The director of Nursing.
Lloyd: Director of nursing. Okay.
Patrik: That’s what I would do as a next step. And I wouldn’t tell them because you want to a degree catch them off guard.
Lloyd: Yeah. No, I wouldn’t.
Patrik: You are in the 1% bracket of families. No one’s questioning. So, you are in the 1% bracket of families that they can walk all over people, no one’s questioning and that’s why they’re not
happy. But that shouldn’t concern you.
Lloyd: Okay. So tomorrow I will make a formal complaint to the director of nursing, and then what do you think will happen? Or to the CEO, general manager, if I can find him?
Patrik: Yes, what’ll happen is you will get a response from them. And my experience is you will see that ICU will back off.
Lloyd: Okay.
Patrik: Because clearly at the moment, they’re playing on your inexperience or thinking you are inexperienced. Thinking, “Well, that’s what we tell everybody else, and nobody else is questioning.” And what I would do is, what you can do to argue your case is to read the link I sent about medical decision making, and you can refer to that.
Lloyd: Okay. Thank you. She doesn’t want to wean her off right away. And then she says she’s going to have to be weaned off in LTAC (long term acute care). She keeps saying that she’s going to have a
vent to the trach. They’re not going to wean her off here. She needs to be weaned off at LTAC.
Patrik: So, have you responded to that?
Lloyd: No, at that point, I didn’t know she was going to sabotage things anymore. We haven’t signed the PEG consent and they’re thinking they’re planning on Monday to bulldoze. But I think the thing we want to do is we want to try to get her to have the trach.
Patrik: Of
course.
Lloyd: But I think, tomorrow, they’re going to try to make us sign a consent tomorrow for that. And we’re going to obviously say no. She couldn’t look me in the eye because she came by before this evening. And I said, “Is it possible for us to find time tomorrow to still have the surgery?” She said, “No.”
She says that the, they don’t have… And she said something stupid about it, normally we don’t do this right away. She’s blaming us because we were trying to do the second trial of extubation. And I said she had some setbacks, she had fevers. We were told that it was going to be done pretty much… We wanted it to be done right after the extubation? I’m just wasting your time on this one, but she’s definitely being not reasonable. I mean, she holds the cards.
Patrik: No, no, no, no, no, no, no.
Lloyd: She thinks she holds the cards.
Patrik: She
thinks she holds the cards, and you think she’s holding the cards. And you need to change your thinking very quickly, because a lot of it comes down to your mindset. If you think you can, you can. If you think you can’t, you can’t.
Lloyd: But I’m going to try. I’m going to reach out to-
Patrik: No, no, but that’s half of the battle. So, I’ve sent you two links via text, and you can have a look at them. And I would argue this, I believe you need to do two things as a next step. Make a complaint to a hospital executive, whether that’s the director of nursing. I would go all the way to the top to the hospital CEO or
hospital general manager. Use that second link that I’ve sent you. It’s clearly documented that it allows family members to make healthcare decisions, including about the withholding or withdrawal of treatment, on behalf of patients who lose their ability to make such decisions and have not prepared advance directives regarding their wishes. That’s exactly the situation you’re dealing with. So that’s Number 1. Number 2, I do believe you need to now let them know that your research about LTAC
(long term acute care) and the reviews you have read online does not put you in a position where you want to send your mom into an environment that you think is unsafe because of the research that you’ve done.
Lloyd: Okay. So do I tell the CEO and general manager that as well?
Patrik: That’s a good question. I think to a degree, there are two separate issues. She won’t go anywhere without a PEG. And they know that. ICU knows that which is why they’re trying to pull bulldoze a PEG.
Lloyd: Yeah, okay. So, what is your gut saying? Do I let this-
Patrik: No, no. My gut is saying that you should make these two separate issues. My gut is telling me you make the complaint to the general manager about the trach being delayed because you haven’t
given consent to a PEG. And I would use the word medical negligence. It’s a good term to use, I believe, strategically. And because obviously you can say that a tracheostomy should be done after roughly 14 days of ventilation with a breathing tube. And so, you should be doing that and then make the-
Patrik: And then make her go to LTAC a separate issue with ICU only. If she’s not having a PEG, she’s not going anywhere. I would leave that just with ICU saying, “Hey, look, I’ve done my research about LTAC. This is what I’m
finding. I do not think that LTAC is the right next step for my mom. I think she should be weaned off… She should have the trach, should be weaned off the ventilator and then go to a neurology rehabilitation center.” Now, I can’t remember. We spoke about this, about her having a neurologist.
Lloyd: Yeah. I found one
today that I was going to call tomorrow to see if that has privileges, I think, with this house or affiliated with this hospital. But when we asked a social worker about a referral kind of thing, she said that, or even the attending, she said, “You wouldn’t need that right now. It would be like in three months.”
Patrik: Okay, yeah. Okay.
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