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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 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 am here with a live stream today, where I want to answer your questions if you have a loved one in intensive care. And this is one of the most commonly asked questions for families in intensive care and it’s a question that we get all time. And today’s live stream is about how to avoid a DNR or how to revoke a DNR.
How To Avoid A DNR Or How To Revoke A DNR! Livestream!
Good afternoon, wherever you are. This is Patrik Hutzel from intensivecarehotline.com with another live stream today for families in intensive care.
Today’s topic is, “How to avoid a DNR or how to revoke a DNR?” Now, for those of you who don’t know what DNR stands for, it stands for, Do Not Resuscitate order, or in some countries, mainly in the UK or in Australia, you may also hear a synonym which is NFR, which stands for Not for Resuscitation. At the end of the day both mean the same, that if a patient is in intensive care or even outside of intensive care, that they will not be resuscitated if their heart was to stop.
Now, we dive much deeper into that today as part of this livestream. But this is just to set the scene that this is what our topic is all about. We will be mainly talking about DNRs and NFRs in ICU. We’re not going too much in detail about DNRs or NFRs outside of ICU, because that is not our topic, really.
First of all, I want to welcome you again to this livestream for our viewers. And I want to thank you for coming on to this livestream because I know your time is precious. You probably have a loved one in intensive care. If you are watching this livestream, and I know your time is very precious. Now, first off, I would welcome you to subscribe to my YouTube channel for updates for families in intensive care. I would welcome you to leave comments, type in your questions, share your insights, and obviously, I would also welcome you to subscribe to my YouTube channel and like the video. I’d also encourage you to stay right until the end of this livestream and share your questions.
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Hi, Helene! I’ve seen that you’re here. So type in your questions if you have any. So let’s dive right into our topic today, “How to avoid a DNR/NFR in ICU or how to revoke it if there is a DNR?” So, many critically ill patients in intensive care where literally their life is often hanging at a thread and they’re only being kept alive by multiple forms of life support, they might’ve sustained severe head and brain injuries, they might’ve sustained pneumonia, they might’ve sustained ARDS or lung failure, they might have Guillain-Barre syndrome, the list is endless of conditions when people go into ICU.
But what they often have in common is, especially if lives are hanging at a thread, that ICU teams can be quite forceful and quite pushy to go to families and say, “Look, don’t you think that your loved one should have a DNR or do not resuscitate order, or an NFR which stands for, not for resuscitation order?” Now I’m very skeptical when it comes to those orders. And I can share freely about my experience after having worked in intensive care for over 20 years where I’ve also managed two ICUs as a nurse unit manager for over 5 years. So I can share freely why I have some reservations about this approach about DNRs and NFRs, more or less being handed out like lollies. And I will dive into that in a moment.
Now, when ICUs approach families in intensive care and they say, “Look, we think you should be signing a DNR or an NFR for your loved one, because if their heart stops it’s best to let them go, not resuscitate because they wouldn’t have any “quality of life down the line anyway.” Now I will make a live stream around quality of life in and outside of intensive care in the future anyway, but let me share this just for now. Quality of life in intensive care or outside of intensive care for that matter is subjective. Quality of life can never be objective. It always comes down to the individual and to their point of view and it’s not up to the intensive care team to determine what quality of life means for a patient or for a family in ICU.
So then ICU teams often go on and say, “Look, it would be “futile” if we did CPR, if we started CPR, we need to potentially crack some ribs, and we need to fracture the ribs and there is going to be undesired side effects from CPR.” Now, my question to you is this, or to anyone for that matter, what would you prefer? CPR and cracked ribs or your loved one being dead? Now, again, I’m not here to make a judgment. I’m here to give you options. And I’m here to educate you about the complicated landscape that is intensive care. I’m here to educate you about your choices, about your rights, because most ICUs pretend that you as a family don’t have any rights. They just pretend that, “Oh, well, we can make decisions about life or death in a vacuum without anybody questioning us.” And they’re very good at pretending that, and they’re very good like they’ve been doing it forever and a day, and that families will just go along with whatever ICU teams are suggesting. So, nothing could be further from the truth. ICUs are not operating in a vacuum. ICUs have to follow protocols, procedures, state and national laws when it comes to DNRs or NFRs and end-of-life decision-making. So, again, coming back to the original question of how to avoid a DNR. Well, it’s as simple as not signing a DNR form, and it’s as simple as you advocating for your loved one and making sure they get the best care and treatment.
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And Helene before I come to your question, just give me a second. I’ll just want to finish off my train of thought and then I’ll come to your question, Helene. So, the bottom line is this. If you sign a DNR or an NFR, you’re more or less signing the death certificate for your loved one. And why do I say that? If you sign a DNR, the ICU team won’t put their best efforts forward. You’re almost signing like a death warrant and you’re almost signing like, “Oh, well we don’t want everything done to be anyway. We might as well just move towards palliative care or end of life care pretty quickly.” And I’ve seen this again, hundreds, maybe thousands of times after 20 years in ICU. And now obviously, in my own consulting and advocacy practice. I’m dealing with it almost weekly.
So, Helene, just quickly coming to your question, you’re saying, this is very topical, thank you Helen for sharing this. You’re saying, “Mom’s ICU team doctors pressured me to change her to be DNR to cover up malpractice injuries.” Yeah, no surprises there Helen. And this is so topical. No surprises there that whenever the ICU team thinks they need to cover something up, it’s always best from their end to say to you, “You are cruel if you are not signing a DNR.” Well, I believe that ICU teams are cruel if they’re not putting their best foot forward to save people’s lives.
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Now, why would ICUs, why would they push for DNRs or NFRs? Well, from my experience of having worked in intensive care for over 20 years, from my experience, the following is applicable. You got to picture this, and you always have to ask yourself when you have a loved one in intensive care, what is the worst case scenario for an intensive care unit? Now I can tell you what the worst case scenario is for an intensive care unit. The worst case scenario for an intensive care unit is to look after a patient in intensive care that’s critically ill indefinitely with an uncertain outcomes. And most patients in ICU, or many patients in ICU fit that criteria. And this is especially true now in 2021 with COVID with ICUs being full of patients with COVID-19, ARDS/lung injuries or lung failure, many of those patients would fit that criteria. Their outcome is very uncertain and they could be in ICU indefinitely for long periods of times. And by ICUs trying to limit or withdraw treatment, by ICUs trying to push families to sign DNRs or NFRs that is one way for them to avoid their worst case scenario. And again, I can’t stress enough, that if you do sign or agree to a DNR or an NFR, you’re more or less signing the death warrant of your loved one. Because the ICU will not put their best foot forward to save your loved one’s life. And your loved one will not get best care and treatment. There’s this underlying notion in ICU that when a DNR or an NFR has been issued, that ICUs will not put their best foot forward anymore. It’s almost like signing a death warrant.
So, I’ll give you some practical examples as well why I made a whole video around this or a whole livestream around this. Not only are we dealing with this here at intensivecarehotline.com every week where families come to us and they say, “Look, the ICU team puts pressure on us. I’ve signed a DNR, or they want me to sign a DNR. What should I do?” And again, the bottom line is this, do not sign a DNR. If it has already been signed, revoke it. How can you revoke it? It’s quite simple. You just let them know that you changed your mind. Now, the only situation where there could be a spanner in the works is if your loved one has a documented advanced care plan. What do I mean by that? Maybe your loved one has a documented advanced care plan before they went into ICU where it’s documented in a living will, “I do not want to be resuscitated.” Fair enough. If that’s your loved one’s decision or your decision, that’s fine. I have no problem one way or another. What I do have a problem with is ICUs not educating families transparently around what their choice really means. And ICUs not being transparent around that if they start CPR, if they crack some ribs, they could still save lives. And then let’s look at the recovery down the line. Again, there’s no guarantee, but I do also know from experience after 20 years in ICU, it’s very important for families if their loved one is dying, how they die, do they go out with a fighting chance? That’s really important for families and it’s important for patients as well.
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So, let’s look again at how to revoke a DNR if that is the case. So, I can give you some very practical examples here from my experience of having worked in intensive care for over 20 years in 3 different countries, and where I also managed two ICU for over five years as a nurse unit manager. So I can give you some practical examples here. I remember a few years ago when I was still practicing in intensive care at the bedside, one of the ICUs that I worked at, I realized when I looked through the patient’s paperwork, as part of my shift, I realized, oh, there was an NFR/DNR form which wasn’t signed by the patient or by the patient’s medical power of attorney/next of kin.
Now that was a big red flag for me, where I obviously then went back to the doctors and also went back to the families and said, “Look, here is an NFR/DNR form which hasn’t been signed by either yourself or by the doctors.” And then I said to the families, “Are you aware that this form exists?” And families were absolutely shocked that they had no idea that this form even existed. It was never discussed with them. The doctors never sat down with them and explained to them A) what an NFR form is, and B) that they just issued an NFR form for a particular patient. When I realized that I was looking after a patient, that I was giving care to a patient where this was the case, I was furious.
It also impacts on my practice because, picture this. If I was looking after a patient in intensive care and they had a DNR/NFR without the patient and the family knowing, but I know about it but I don’t agree with it, and the patient has a cardiac arrest, I don’t start CPR and the patient dies, I could lose my nursing registration. The family could sue me because I’m following something that is illegal. That’s as far as this goes. That if an NFR or DNR is being signed by the doctors, but hasn’t been discussed with the family where the families haven’t given consent, that is illegal. That could be a criminal offense. And I’ll illustrate that a bit further in a moment. I just want to quickly come back to Helene’s question.
Because Helen, you’re saying, “One time in 2012, I was tricked, lied, and manipulated in order to change mom’s resuscitation. They used scare tactics against me.” Yeah. No surprises there, Helen. No surprises there whatsoever. Nothing new there. That is exactly what they did when… Yeah. No, I understand Helene that it was in regards to resuscitation status/DNR. Yeah. I get that. Well, that was exactly the case when I challenged ICU teams when I was still nursing at the bedside and in ICU, where I said, “Look, you got to change this.” And I did not hold back to inform the family about what was happening behind their backs. And obviously the doctors didn’t like it. And the ICU at the time was trying to “manage me” and were trying to schedule meetings with nurse managers and all sorts of people.
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And I just refused. I said, “What do you want? Do you want me to go to a lawyer? Do you want me to report you to the department of health for illegally issuing NFRs and DNRs?” And then they backed off. And I worked in that ICU for a very long time. So, at that stage, it actually showed me that you actually do have that power to make those changes. Because once you call them out on doing something illegal and you can back it up, there’s not much they can do. They would be exposing themselves to illegal activities. So that’s how far this goes. I’ll give you another example in my own practice here at intensivecarehotline.com how we revoked an NFR.
So we had a client a few years ago that was in ICU, and it was actually a local client, so I could actually go and visit the client in ICU. As you might be aware, a lot of the consulting that we’re doing is over the phone. But this was actually a local client here. And I was able to go to ICU with a family. And we were actually looking at the client’s medical records as part of a visit to the ICU. And just on that note as well, you, as a family have the right to look at medical records at any given time. Don’t let any ICU tell you otherwise. No matter where you are, whether you’re in America, whether you’re in Canada, whether you’re in the UK, Ireland, Australia, New Zealand, it doesn’t matter where you are. You have the right under the freedom of information to look at medical records at any given time. Which is what we did with our local client here. And what we did with our local client is, we looked at the medical records and I spotted an NFR very quickly. So when I spotted this NFR, I took a picture of it secretly. And then we got the evidence. And we went back to the ICU team and we were challenging them on the NFR because it had never been discussed with the client. And because it had never been discussed with the client or with the patient, again, it was an illegal activity. Their loved one could have had a cardiac arrest, their heart could have stopped, the doctors and the nurses would not have resuscitated the patient because they signed an NFR without consent of the family or the patient.
And if the patient had passed away, those people could have been sued. The doctors and the nurses could have been sued for an illegal activity. So I can back that up, that it is illegal, because we then engaged a lawyer, and we went to court. Went to court within less than 24 hours. And as soon as the hearing proceeded, the court decided for the ICU to take the DNR order/NFR order off. Because, as I said, hospital policies, national laws, state laws, whatever you want to call them, say that it takes patient or a family consent to issue NFR or DNR orders. It’s as simple as that.
Now want to welcome all of our other guests as well on this call. I know Philine you’re here. Philine, if you have a question, just type it into the chat pad so I can get to it and answer it.
So, yeah, that was my experience in ICU, that you can definitely challenge it, and you can even challenge it outside of ICU in a court. But what is important for you as families in intensive care, you need to get access to the medical records. I can tell you now from experience, ICUs will lie into your face and will say, “Your loved one is for full resuscitation.” And in the paperwork, there might be a DNR or an NFR. That is why it’s so important for you to get access to medical records. I can’t stress this enough, that you need to get access to medical records as quickly as possible. And unlike 10, 15 years ago, many ICUs now can give you online access to the medical records. They basically send you a link to a website. They issue you with a username and a password, and you can look up medical records at the drop of a hat.
And as part of our consulting advocacy here at Intensive Care Hotline, we can help you with reviewing those medical records, again, at the drop of a hat. It’s really good in this day and age, with the internet, there are still some ICUs that are not electronic, but a lot of ICUs now have electronic records, and you should definitely make use of that. As soon as your loved one hits intensive care, you need to get access to medical records so you can actually see what’s happening in real time.
Coming back to DNRs and NFRs again. Other issues that can happen very often when it comes to NFRs and DNRs, sometimes NFRs and DNRs may also be staged. And what do I mean by that?
So, you could say a DNR is not for CPR, not for chest compressions. Not for chest compressions in case the heart stops. But then you could go even further. You could say, “Okay, someone is not for inotropes or vasopressors, which is considered life support. Someone is not considered for dialysis in case the kidneys fail. Someone is not considered for antibiotic therapy in case they’re getting another infection.” So once you start the process of DNR, you’re almost undermining your loved one’s recovery. You’re almost undermining your loved one’s treatment. You’re almost setting an example for the intensive care team to say, “Yup, I’m happy with you to wind everything down.” Think about it. Why would the ICU team go full steam ahead with treatment if you’re basically saying, “Well, I don’t want my loved one to be resuscitated.” So you really have to carefully think about those things and consider your decision-making.
Helene, you keep going there. And you’re saying, “Once I discovered two hours NFR, it had been changed right before an emergency hospital transfer to LTAC. The hospital refused to change it and I insisted the LTAC to change it.” Sure. Can you share, Helene, whether it was changed in the end? Can you share that with us? Again, there’s nothing new there. Here is another important aspect. Whether it’s going to LTAC or whether it’s going to the hospital floor or to the hospital ward. Part of the issue with a DNR/NFR is also that if your loved one leaves intensive care, part of the NFR/DNR is often that a readmission to intensive care is denied as part of the DNR or NFR. It might say on the form, not for ICU readmission. You can see why I’m saying to never sign it because you’re almost signing the death warrant of your loved one.
Now, let me just go to another question from Tracy. Tracy says, “My son died because they turned his life support off. They told me his brain was the equivalent to 50% damage. The autopsy said different. Now they’re saying because he left me no will at 29 years of age I am not entitled to the medical records.” Tracy, number one, I’m terribly, terribly, sorry to hear that you lost your son at 29 years of age. It’s terrible. But Tracy, the only reason you may not be entitled to his records is if you are not the medical power of attorney. If you are the medical power of attorney then you definitely have access or the right to have access to the medical records. Maybe you are not the medical power of attorney. I can’t obviously comment on that. But when you’re saying, they told you that his brain was the equivalent of 50% damage. The autopsy showed differently. Well, there’s no surprises there, Tracy, because ICU teams only tell you half of the story. And unless you are asking all the right questions, and unless you’re getting help from professionals like ourselves here in Intensive Care Hotline, you’ll be fighting a losing battle.
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If you don’t question everything that ICU teams are telling you, you’ll be lost. And many families ask for help when it’s too late unfortunately. But medical records, you have every right to access medical records if you are the medical power of attorney. Tracy, you’re also saying that, “Admitted that his brain stem was not dead.” Now, I can’t stress this enough. There is a very big difference between brain dead and brain damage. There is some difference like day and night. If someone is considered brain dead, they have to go through brain death testing from two independent parties. And only if two independent parties agree that someone is brain dead, in most countries and states, someone is then actually also legally dead. But that would be for a whole another discussion. The bottom line is this. If someone is brain damaged, even severely brain damaged, again, there is no reason to stop life support. Because, again, it comes back to quality of life. What I mentioned earlier. What is quality of life? What is it? It’s a subjective measure not an objective measure. It’s up to you, it’s up to your loved one, what is acceptable for them for quality of life. And you should proceed accordingly. And in this situation, Tracy, it sounds like the ICU team, just like in many other situations, was walking all over you and it costs your son’s life, which is beyond tragic. And for anybody watching here that has a loved one in intensive care, you have to do your research from day one. You have to question from day one. If you’re not getting professional help, if you’re not engaging with us here at intensivecarehotline.com, your loved one’s life might be at risk.
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Helene, you’re saying, “The ICU team refused to change it. Therefore, I had to wait until mom was transferred to a different hospital or LTAC, 5 hours later.” Yup, that’s the sort of stuff we can help with here at Intensive Care Hotline. We’re getting outcomes for families because, if we are getting on a call with the doctors and the nurses with you, we changed the dynamics. All of a sudden, the intensive care team realizes that they’re dealing with a family that has help from someone that understands intensive care inside out. And that’s what you need. You’re going into intensive care when you have a loved one there, it’s like entering the matrix. You’re going into a different world. And unless you have someone that can hold your hand in this environment, you’ll be fighting an uphill battle. I can’t stress enough that whenever someone is going into intensive care, there’s dozens of things happening simultaneously. And unless you understand those dozens of things, you have no idea what you’re up against.
So, I’m coming to the end of this live stream today. I’ll be doing another livestream again next Saturday, 8:00 PM, Eastern Standard Time, which is 10:00 AM, Melbourne time here in Australia. And I’ll see you all again there.
Now, Tracy having another question. “Have you ever heard of someone retching as they died? My son sat up three times retching to be sick before he died?” Yes, I have actually, Tracy. I remember, I’ve been involved when I was nursing in intensive care. I’ve been involved in many, what I would consider were palliative care situations, where we were “making people comfortable” to approach the end-of-life, when we were taking breathing tubes out and extubating patients.
Now, in retrospect, and in hindsight, it was actually euthanasia what we did, which was one of the reasons why I left intensive care eventually. Because I didn’t want to be part of that anymore. Now, if you’re performing euthanasia on someone, euthanasia stands for, you’re basically hastening death by using medications. And it’s illegal in pretty much any country. Yes, whenever we were doing, more or less, what I consider now is euthanasia. I guess I have seen that. And when I realized that this was happening, that was one of the prompts for me to leave intensive care and start my own practice here to help families with what I thought was just cruel at the time. So, yes, unfortunately I have seen this Tracy.
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Okay. If there are no other questions, I do want to close this off for today.
What do you mean, Helene, when you say, “Would fentanyl be considered? What do you mean by that? Fentanyl is part of palliative care and is part of…
Look, Tracy, I don’t have enough information about your situation. But what I will say, Tracy, is this. I would need to look at the medical records, whether they killed him or not, but the signs are there that they have. But I would need to look at the medical records to give you the exact answer to that.
Helene, what do you mean with ending life? So when someone enters palliative care for end of life stages, or for end-of-life care, a combination of medication that is being used is midazolam and either fentanyl or morphine. So yes, you’re absolutely right, Helene, that fentanyl can be used to kill someone. Yeah. The problem in intensive care is that it’s such common practice and intensive care professionals don’t even realize what they’re doing that I believe, euthanasia, is a common practice in intensive care. And it’s horrible. As soon as I realized that this is what we are doing at times. That’s when I thought to myself, “No, I can’t be part of that.”
Anyway, so that’s for today. Now, if you have a loved one in intensive care, go and check out intensivecarehotline.com. Call me on one of the numbers on the top of our website, or simply send me an email to [email protected].
Now, the phone numbers you can reach me on is, in the U.S. and in Canada, you can call me on +415 915 0090 that is again, +415 915 0090. In the UK and in Ireland you can call me on +44 118 324 3018. That is, again, UK and Ireland, +44 118 324 3018. And in Australia and New Zealand, you can reach me on +61 4 1094 2230. That is, again, +61 4 1094 2230.
Now, I realize there are other questions I’ll just quickly tend to them. Helene, you’re saying, “That is what happened to mom uninformed to me.” Yeah. Helen, no surprises there. Unless you’re digging deep, unless you’re having access to the medical records and you’re studying them and you’re having a professional like myself look at it. You have no idea what’s happening behind the scenes. You have no idea. 99% of families in intensive care have no idea what’s happening why their loved one is there. They trust blindly and you can’t trust blindly. This is your loved one’s life in somebody else’s hands. And even though I’m not talking about every intensive care unit, even though it feels like it. There are ethically intensive care units out there, but there are also many unethical intensive care units out there. And there are many intensive care units out there where the pressure is so high, in terms of managing their beds, managing their finances, managing their equipment, and managing their staff, that those pressures often lead intensive care units to stop treatment prematurely to issue NFRs and DNRs in that sort of the environment that ICUs are operating in.
But I want to leave it there for today. Again, I will be doing another YouTube livestream next week. The topic will be on my YouTube channel. I haven’t quite decided what I’m going to talk about next week, but I’ve got a whole list of topics that I want to go through in the next few weeks. I want to thank you all for coming on to the call and for your questions. I really appreciate that.
Go and check out intensivecarehotline.com. I do have paid consulting and advocacy options there, where you can work with me one-on-one. I also have a membership for families in intensive care where you have access to me via email and via our membership forum.
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And we also, part of our service, we are reviewing medical records as part of our service. And we can help you with finding out, digging deep, whether a medical negligence has been done like in Helene’s case or in Tracy’s case who had the questions today. It looks like there has been medical negligence. And we can help you with reviewing those medical records and finding the evidence that negligence has been done. Thank you again.
Like this video, comment below, what questions have you have? What topic do you want me to talk about next? What insights you have from this video today. And also subscribe to my YouTube channel for new updates and live streams for families in intensive care. Take care for now.
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