My Mom is Already Awake and Responsive in ICU. Why is the DNR (Do Not Resuscitate) Still in Place?

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 Mom Wishes to Continue Her Treatment in ICU. How Can We Remove Her DNR (Do Not Resuscitate) Status?

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, Ronnie, as part of my 1:1 consulting and advocacy service! Ronnie’s mom is already awake and responsive in ICU. He is asking why the DNR is still in place.

My Mom is Already Awake and Responsive in ICU. Why is the DNR (Do Not Resuscitate) Still in Place?

“You can also check out previous 1:1 consulting and advocacy sessions with me and Ronnie here.”

Part 1

Part 2

Patrik: It’s almost like bullying a critically ill patient. It’s despicable.

Ronnie: “And we’re already sending her to her grave.” It feels like that. “So, let’s just ignore her.”

Patrik: It’s despicable. I tell you what I believe what your next steps are. Definitely what we talked about, get some evidence that she’s of sound mind. Get some evidence of that. I also believe that one of your next steps is to write or contact, I would almost say probably in an email, contact the hospital CEO or hospital general manager. Because I believe, at the moment, you almost need to take this issue out of ICU. And attach, give them as much evidence as possible.

You should definitely keep advocating with the team. But I would take this out of ICU now. I would take this to the hospital CEO as quickly as possible if I was you. Or the hospital general manager, whatever their titles are. In terms of him going home, I really need to give you almost a case study, and I will point you towards an interview that I’ve done a couple of years ago, would’ve just been before COVID.

So there was a reasonably similar case in other countries. Reasonably similar case with a difference that there was an 80-year-old man in ICU for about 12 months at the time. Very similar situation couldn’t be weaned off the ventilator. The man was absolutely desperate to go home. And after much back and forth with the family and with us to them advocating and saying, “Well, there’s no reason why this man can’t go home with the right support.”

And he did in the end, and the health service is paying for it. What I can do, as a first step, I can send you a link to this interview so you can verify what I’m saying here. It’s on our website. I’ll send you a link to that. And it was a long and hard-fought battle, but in the end, this family got there. And it was sort of a similar approach from the ICU, they were dismissing what this man wanted. And the man was of sound mind as well, very sound mind. And bear in mind, that was pre-COVID. Pre-COVID ICU beds were in short supply. So now we’re still reeling from the hangover of COVID.

ICU beds are in even shorter supply now than they were before COVID. They have no interest in keeping your mom for another two months until home care can be organized. They want to get her out as quickly as possible because winter is coming, they need beds and your mom is potentially blocking a bed if they keep her alive. It’s very sad to say it like it is, but that is what it is.

Ronnie: And that’s why-

Ted: We’ve acknowledged that.

Ronnie: … We have. And I think because we said it in very similar… We made it clear that that’s what we’ve understood at that meeting. It seemed like now they’re collecting evidence in case we take it further and in case we take it to court, they have everything they need.

Patrik: Well, I think they’re skipping a step. The step they’re skipping is talking to your mom. That’s a very significant step.

Ted: We’ve asked if that step happens with the speech valve, for example, the family must be present. It can’t just be the doctors. And we’ve said mom is a patient whose English is a second language, so things need to be simplified for her et cetera. The family needs to be present.

Patrik: Get a translator. Have you asked for a translator?

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Ted: You know what? She’s been in the UK for over 40 years. So, her English is… If you speak to her, she can communicate really, really well with you. But if you’re using medical terms, for example, if you say nausea instead of vomit, she won’t straightaway understand what nausea is. You have to simplify it and say vomit to her. Simple things like that. A lot of the time it’s medical terms that have been used, and then she’s not necessarily understanding what they’re asking her.

Patrik: I think you should be asking for a translator for those meetings. I think you absolutely should.

Ted: Okay.

Patrik: They should know that. They’re conveniently ignoring that. They should know that none of these discussions with your mom should be held without a translator. So, if you were here, I would say to you no problem. It would take us a few weeks to set up home care, but we have taken patients like your mom home from ICU. There’s no issue in setting it up. It takes time. Obviously, someone needs to pay for it. That’s not an overnight process. But in terms of clinical criteria, it’s nothing that we haven’t done.

Ronnie, I’ll send you a link to this interview with a daughter of this 80-year-old man that is now at home. Have a listen to that because I believe that’ll give you a lot of insights into what’s happened there. And I don’t know how long it took there to find someone and get the funding, but probably took another couple of months from the outset when it was all agreed that that’s what we are working towards. Probably took at least another couple of months. And even for us here, if someone comes to us in a similar situation, it’s not an overnight process, but there is a process.

Ronnie: Patrik, just one more question regarding lung fibrosis. If mom was successfully able to come off the ventilator, we know she’ll have lung fibrosis forever. Is there treatment for that? Something we can do at home for that?

Patrik: I’ll tell you what the treatment would be. And your mom is 65 when my notes are correct. Is that right?

Ronnie: Yes.

Patrik: And you may not have heard of that, but the cutoff, generally speaking, for a lung transplant is around 65. Generally speaking. That was pre-COVID. It might have changed, it might have gone down a little bit now with COVID because the demand for lung transplants would’ve been even higher during COVID, and they might have changed some of the age criteria.

Lung fibrosis, from my experience, and if you look at the literature, I would argue, is an uncurable disease because of the scar tissue in the lungs. We can’t reverse scar tissue. So, the patient that I looked after in ICU over the many years with lung fibrosis, sometimes, not all the time, end up on a lung transplant list. Now, given that your mom is in “palliative care,” they would reject that on those grounds. But again, I do believe you need to show them that you are doing your research.

Ted: The question is, we don’t even know how severe her lung fibrosis is. They have never informed us whether it’s mild, moderate, severe, or very severe.

Patrik: Wow.

Ted: So, we actually don’t know to what degree it is.

Patrik: So that is why it’s so important for you to get access to the medical records. So important. Because you will find all of that in the medical records. All of that. And I’ll tell you another thing. If you find in the medical records whatever day they documented DNR, then there should also be documentation around that this was discussed with your mom. And if it wasn’t discussed with your mom, I do believe you have a legal case there.

Bear in mind, I am not a lawyer, I’m a clinician. But I will say this, I do believe that the laws are fairly similar because it’s all coming from the Commonwealth. We have taken some hospitals to court here with a lawyer. Again, I’m not a lawyer, but we are working with lawyers here, where we had similar situations, the hospital making decisions without involving the patient.

And once we had evidence for that, we took that evidence to court and said, “Hey, hang on a second. This patient was neither asked nor informed about treatment decisions that you are making.” And that was enough evidence to reverse that. Again, I am not a lawyer, but I would imagine that the laws in the UK are very similar. Does that make sense?

Ted: Yeah.

Patrik: And that’s why it’s so important that you get access to the medical records as quickly as possible. Because if they-

Ted: Can I just…

Patrik: … Please, please.

Ted: Sorry, Patrik, just to interrupt you, just to quickly give you some context of the DNR (do not resuscitate), how the DNR came into place. The DNR came into place on the aspiration night. When mom aspirated in the morning, she didn’t have a DNR in place. She was given all the relevant treatment. Straightaway, sedated again, intubated again. All the BP, the blood pressure medication, every treatment, they just completely threw at mom.

By the nighttime, her kidneys had started to fail. She had gone into multiple organ failure because she had septic shock. In this instance, they said to the family, “You’re losing your mom in the next couple of hours.” Mom did look really, really unwell. And at that point, they said it would not be the right decision at all, not in the best interest of your mother to resuscitate her.

So, the DNR was placed at that point. Mom was in a very… She was sweating, she was losing color, she was completely out. That was placed at that point. The next day, she took a turn during the night, meaning a positive turn. She started reacting to the medication, and her kidneys started doing the right thing. Urine output correct, everything. Then again, she stabilized during the day.

The consultant for the day sat with me and my brother and said, “If she needs a kidney dialysis machine to be placed, we’re not going to do it,” et cetera. He was going around the conversations that we’re not going to escalate care beyond where we are. And I said, “No, keep mom under constant review. Yesterday you said to me that my mom’s going. Today, she’s still here, she’s stabilized. So, keep mom under constant review.”

By the end of that week, mom was completely stable. They had done the sedation-hold, Mom was waking up. She was obviously unsettled with the sedation-hold because she’s coming around et cetera. She doesn’t know what happened to her. She remembered she had aspirated, by the way. Even when she came around, she remembered she had vomited, she had aspirated as a result et cetera.

But the consultant at the time, we discussed the DNR again and we said, “Look, we’re not comfortable with this DNR/CPR (cardiopulmonary resuscitation) in place. So, he said, “Yes, we’ll remove it.” I said to him, “Keep that under constant review.” He said, “Yes, we’ll review it.” Then, three weeks later, when they were administering steroids, they turned around and said to me that that consultant didn’t remove the DNR.

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Ronnie: He didn’t document it.

Ted: He didn’t document it and didn’t remove it, unfortunately. So now we’re telling you it’s a medical decision, we won’t remove it. So, they still haven’t, to this day, removed it. Mom’s come around, she’s awake, she hasn’t been sedated again, thank God. She hasn’t had any setbacks. She’s stayed as she is, stable neurologically sound. Again, nobody asked her.

So, if you keep a patient under constant review and start placing TEP (Treatment Escalation Plan) and DNRs et cetera in place, when they’re making progress, these things can be removed and adjusted according to how the patient is doing. But with mom, it seems that’s not the case because according to them, she keeps having these setbacks. For them, she’s not made any progress. But she’s here 130 days plus later. She’s still with us, she’s still neurologically sound and people can ask her, and she will give the right answer.

Patrik: Absolutely. Look, it needs to be revisited and I have to send you more information on WhatsApp about how decisions should be made and another decision sort of pamphlet, if you will, about DNR. It always says, at the very least, to consult with a patient. And that, to me, is the missing link. That to me is the missing link.

Ted: The missing link. Yeah. So, we said that to them yesterday. We said, “Mom’s neurologically sound. Nobody actually asked her.” And then they said, “Yeah. Well, she’s not got a speaking valve in. So, anything she says now will be irrelevant.”

Patrik: You should be pushing for a translator. You should be pushing for a dialogue with her where you are present and where the doctors are present. I would strongly recommend recording, at least a recording, if not a video, because I do believe it might come to the point where you need all that evidence.

Ted: Okay, Patrik.

Patrik: I’m so sorry to hear what you’re going through there. It’s despicable.

Ronnie: So, the next thing is, now with them, we are meeting again soon. Did they say they’re going to give her seven days to wean her a bit more from this?

Ted: I don’t know if that’s-

Ronnie: If she showed progress in weaning or something like that.

Ted: … Yeah. So, I don’t know. Is that too quick? We have no-

Patrik: No, I think seven days reasonable. I would also push… Especially, what worries me the most here is things like that they wouldn’t give her antibiotics if need be. I would keep that on your radar, and I would try and hold them to account for that, that this is not what your mom wants.

As much as it’s good that they’re giving her seven days to work towards getting off the ventilator, in the meantime, you need to make it very clear to them that your mom is of sound mind, and you tell them why you think that’s the case. And they need to start the dialogue with her as quickly as possible. As quickly as possible. And as I said, I would escalate, especially if you think they’re completely ignoring you. I would escalate this to a hospital executive level as quickly as possible.

Ted: … I don’t know if we also need to involve anyone else at this stage.

Patrik: Look, again, I am not a lawyer. If you feel like you wanted to take the legal route, you can. I would do the following though to test the waters. I would do the following. I would tell them that if they’re not starting to engage you and your mom in a dialogue and find consensus, that you will seek legal advice and gauge their response. Gauge their response. Test the waters.

Ronnie: I did, in the meeting, I think we did a little bit of testing. And it puts them on alert.

Ted: That’s what put them on edge.

Ronnie: Because on the spot, I just said, “What you’ve done by palliating my mom without the family’s permission, what you did do was a serious breach of our trust, the patient’s trust. You failed in your medical obligation, and you failed in your duty of care.” And the consultant turned around and said, “You’re using legal terms. That’s not in the best interest of the patient.” And that was an instant response. And they don’t like… We haven’t sought-

Patrik: They don’t like the challenge.

Ronnie: … We actually haven’t. Up until this point, we haven’t sought legal advice. We just are fighting for mom, we’re advocating for mom, and we can see there’s been a clear breach. She’s being palliated, she’s awake, she’s of sound mind. She’s looking at her for a time. And she’s saying to us, “They’re killing me.” She kept saying, “they’re killing me. You need to take me home.”

Patrik: It’s despicable. Look, I do need to get another call now. I want to leave you with all of that. I will send you a recording of this call so it’s a reference point. I hope that was helpful in any way that you can take the next steps. Do not give up. Keep them on their toes.

Go to the hospital CEO and test the waters again with legal advice. You know it’s nonsense when they’re telling you, whatever they’re saying, it’s not in the best interest. It’s nonsense. You know what’s in the best interest for your mom. Only you know that. Nobody else.

Ted: And she knows herself.

Patrik: And she knows, of course. He and you know.

Ted: Yeah, she knows. Because when we said she wants to go home, they were surprised that she actually wants to go home.

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Patrik: Well, it’s possible. It’s possible.

Ronnie: Thanks for your time.

Patrik: It’s a great pleasure. I hope it’s all going well. Have a look at WhatsApp as I sent you quite a few things there.

Ted: Yeah. Thank you, Patrik.

Patrik: It’s a pleasure.

Ted: Patrik, if we did want you to be an advocate for us, if for example, in these meetings, if they don’t go according to plan, is that a possibility?

Patrik: Oh, definitely. 100%. They need to hear what we are doing here so they can understand that it’s possible for your mom as well.

Ted: Yeah.

Ronnie: Okay.

Ronnie: Thank you so much, Patrik.

Patrik: Thank you so much. Bye.

The 1:1 consulting session will continue in next week’s episode.

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