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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
Why Is It Important That I Have Access to My Dad’s Medical Records in ICU?
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 Stop the Intensive Care Team from Removing Life Support Without Your Consent! Live Stream! (Part 2)
How to Stop the Intensive Care Team from Removing Life Support Without Your Consent! Live Stream! (Part 2)
Part 1 How to stop the ICU team from withdrawing life support without your consent! (Part 1)
My name is Patrik Hutzel, and I’m a critical care nurse consultant, and founder of intensivecarehotline.com.
And today’s topic is about, “How to stop the intensive care team from removing life support without your consent!” And we’re going to dive really deep into this today.
First off, you might be wondering what makes me qualified to talk about this topic, and to give a brief overview of what makes me qualified is, I have worked in intensive care for over 20 years in three different countries. I have also been a nurse unit manager in intensive care for over five years as part of that career path. And I have also worked with Intensive Care at Home for the last nearly 10 years, and also way back when in my earlier days of my intensive care career. So, I have a really good insight and understanding about intensive care and also about intensive care at home services. And I talk to families, and I professionally consult and advocate for families all around the world in intensive care. So, I have a very good understanding of what’s happening in intensive care, especially in English-speaking countries. So, I have a very good understanding of the advocacy side for families in intensive care.
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But, let’s dive right into today’s topic. So, to give you a little bit of overview, when I worked in intensive care, either as a nurse unit manager or as a bedside nurse, or as a nurse in charge, I noticed that often end-of-life situations were made without family consent. And you can imagine that this sparked a lot of controversy, a lot of conflict. But more surprisingly to me, as much as there was conflict and dispute and controversy, there were also many situations where families didn’t dispute, and they were just going along with whatever the intensive care team said would be the right thing to do.
Now, as an intensive care nurse, I can accept that death is part of life. I know that life can change quickly. I know that I do not take being alive for granted because I’ve seen so many people die. By the same token, what has always gobsmacked me in intensive care is that, especially when it comes to end-of-life situations, that families just simply don’t understand. They don’t question. They just think that whatever the intensive care team is telling them is correct. They don’t question. And they also believe that intensive care teams operate in a vacuum, meaning they can do whatever they like, especially when it comes to end-of-life situations. Now, killing someone could be perceived as murder, it could be perceived as euthanasia. I could never get my head around why families are not more vocal about it.
But anyway, as I was getting along with my intensive care nursing career, I could certainly see the families that were questioning. I could also see myself questioning. What I mean by that is, for example, I’ve been in situations as a bedside nurse where the nurse in charge or intensive care doctor said to me, “Hey, by three o’clock today, we are going to withdraw life support on this patient.” And I said, “No, well, if you want to withdraw life support, you can do it yourself. I’m not going to do it because the family hasn’t given consent, the family’s not ready for it.” And then I actually realized while I was disputing decisions, especially end-of-life decisions, I will actually realize that intensive care teams can’t just make decisions. And then I studied policies, and procedures. I studied local laws and so forth. And the research I was doing was pretty much telling me, an end-of-life decision needs to be made in consensus with a patient or with a family. And I could see that this was being undermined in intensive care all the time and I just couldn’t accept that. I didn’t want to accept that. Families didn’t want to accept that. So, this was one of the reasons why I started Intensive Care at Home. It was one of the reasons why I started the Intensive Care Hotline, because I could just simply see the need for this in any case.
So, let’s just illustrate today’s topic with some practical examples. So, as I just mentioned, it started out with me at the bedside where I’ve been asked to, at three o’clock on a shift, to stop life support and basically kill a patient. And I was not okay with that. I was okay with it if I thought there was no other option. And I was okay with it if all parties agreed on it, families, patients potentially, if there were in a position to make that decision, and intensive care teams. If we were all on the same page and we thought, “Look, there is nothing else that can be done”, I could live with that. But I couldn’t live with it if there were other things that hadn’t been tried, including intensive care at home services. And then as I said, I realized that I actually had some power in this. They couldn’t just force me to withdraw life support. If I did that, as a bedside nurse, and I did that without family consent, the families could drag me to court. They could sue me. But on top of that, besides the legal aspect, there’s the moral and ethical aspect of it, where I just go, “Hang on a second. I did not go into intensive care nursing to kill people.” That’s not what I signed up for.
So then, it led me to the path of, if I have that power in intensive care to have the impact on such critical decisions, that empowered me to obviously start my own professional consulting and advocacy company that has a much bigger impact than just me working with a one-on-one patient in intensive care. And in spite of that, it was random which patients who were allocated anyway. So, with Intensive Care Hotline, we just have such a wider reach. I’m talking to people all over the world, no matter where you watch this video. You might be in America, you might be in Australia, you might be in the UK, you might be in another country. In China, in South America, who knows where you’re watching this. And the information that I’m sharing with you is pretty much universal from my experience.
So then, as I was starting to professionally consult and advocate for families all around the world, many of those families came to us and they said, “Hey, my mom, my dad, my spouse, whatever, is in intensive care. And the intensive care team is telling me that tomorrow at one o’clock they want to stop life support. They want to do one-way extubation and the most likely outcome of that is that my mom, my dad, my spouse is going to die.” And they felt like they had no other choice. And when I started talking to those families and I got actively involved, similar to me working in ICU, we could get outcomes very quickly. And families, all of a sudden, realized, they do have a choice, they do have power, and they do need to give consent.
Giving you the first example. So, there was a client that we worked with in Brisbane in Australia and the family came to me and said, “Look, my husband, my father is in ICU. He’s got pancreatitis. And he’s on high doses of inotropes and vasopressors. He’s on ventilation support. He’s in an induced coma. And the intensive care team is telling us he’s not going to survive.” This was a gentleman who was in his early 60s and I said to the family, “Okay, let’s get on the call with the doctors.”, which is what we did. We went on the call with the doctors and the nurses. And I obviously got a handover from them. And I was asking what was exactly happening. And there was this doom and gloom speech and, “He won’t survive. He’s on too high doses of inotropes.” And he was, don’t get me wrong. I remember that this patient was on very high doses of inotropes. And I said to the intensive care team and to the family, “I understand he’s very critical, but if you stopped everything, he’s definitely going to die. And if you continue, he has a fighting chance of survival.” And again, the intensive care team doom and gloom talk about, “Even if he was to survive, he wouldn’t have any quality of life.”
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Anyway, cutting a long story short. I was guiding the family throughout this ordeal really for many weeks at the time. And I was holding the intensive care team accountable with all the right questions saying, “Why are you not doing this? Why are you not doing that?” And I reminded them on several occasions that they can’t just stop treatment without client or patient or family consent. And again, at the time, we advocated on a policy level. In this situation, Queensland Health has policies that treatment cannot be withdrawn without family or patient consent. And a few weeks later, the patient actually left ICU alive. He had a tracheostomy, but he was weaned off the ventilator. He survived against the odds. But what intensive care teams don’t share with families is that, more than 90% of intensive care patients survive. So, the odds are in a patient’s favor. Now I’m not saying that if someone survives intensive care, they will have a fantastic quality of life. That’s not what I’m saying, but people can survive. And then, the quality of life is probably then, the next subject that needs to be talked about.
The bottom line is, intensive care teams are very poor at predicting what happens outside of ICU once patients have left intensive care. So, they’re very poor at predicting that. I do believe we here at Intensive Care Hotline, and also because we are running Intensive Care at Home, we have a much better understanding of what’s happening after intensive care. We have a much better understanding of what’s possible for patients. We also have a good understanding of what’s needed on a service level to provide that quality of life. And we also have a good sense of the business side of things where services like Intensive Care at Home provide a win-win situation for everyone, because we are also cutting the cost of an intensive care bed by around 50%. And we’re improving the quality of life for patients and for families at home. It’s a win-win situation. It’s a no-brainer but I don’t want to digress here.
Coming back to this particular case study, where we worked with a client in Brisbane at that time. I then had the ability, months down the line, to actually talk to this gentleman and to talk to the wife again and talk to the son. And I was talking to the gentleman that was basically meant to die in ICU. And he said to me, “Well, I’m so grateful that you helped my family to keep me alive. I’m so happy to be at home.” It’s unbelievable how quick intensive care teams are to try and make executive decisions about life or death. And again, withdrawing life support against the family or patient consent could be murder, could be euthanasia, and could be homicide. I am not a lawyer. I’m not a legal person. I’m not qualified to give you legal advice by any means, but I will say this, “Withdrawing life support without consent could definitely be murder. It’s definitely euthanasia.” Because euthanasia happens all the time in intensive care.
Anyway, moving on to our next example, as part of my professional consulting and advocacy journey, where we stopped the intensive care unit to remove life support, just by understanding intensive care, understanding patient’s rights, understanding family’s rights, and also understanding what ICUs can and can’t do. So, then we worked with another client, down the line, and there were many others but they’re just the ones that I vividly remember. So, we worked with another client, here actually, in Melbourne, where I had the opportunity to meet the client and meet the family and also meet the client in the ICU, where again, the family contacted me saying, “Look tomorrow at one o’clock they want to withdraw life support on my 57-year-old dad, he had a stroke. They want to extubate him. He was on a ventilator and most likely he’s going to die once he’s off the ventilator.”
So I went into the ICU, looked at the medical records, and then I could very quickly see that a DNR had been signed. DNR stands for “Do Not Resuscitate” order or “Not For Resuscitation” (NFR) order and looked at the paperwork. I could see that a DNR had been signed, but the family didn’t know about it. The family did not know about it, that’s illegal. That is illegal. How can you sign a DNR without patient or family consent? Now, the patient couldn’t give consent in this situation. So, it then falls back to the guardian, which in this case was the wife. So again, then we argued on a policy level. Because again, if you look at DNR or NFR policies in hospitals, they clearly say that a DNR or an NFR can only be issued with family or patient consent. So, we took that information, and we actually went to court the same day. Again, I am not a legal person, but we obviously engaged a lawyer. And we went to court that day and within less than 12 hours, the end-of-life decision was overruled. Because again, you can’t just kill someone without consent. If you are, you’re committing murder. And lo and behold, that patient to this day is still alive as well.
You need to always question when intensive care teams give you the doom and gloom speech and they tell you that it’s, “in the best interest” for your loved one to die. You must be wondering whether they’re out of their mind. How can it be “in the best interest” of someone to die unless they want to die? Unless they have a terminal illness, and they are suffering and they’re in so much pain that they want to die. Again, it comes back to patient and family choice. It’s not up to the intensive care team to tell you when it’s the right time for your loved one to die. It’s not up to them.
So, you can see where I’m going with this in terms of that. (A) Intensive care teams do not operate in a vacuum despite of them trying to convince you that they can do whatever they like. That is definitely far from the truth. So, you need to question everything. You need to question everything that they do. They have their agenda, and you know nothing about that agenda. You know nothing about that agenda. Their agenda is to save money. Their agenda is to free up beds. Their agenda is to free up staff. They have patients knocking at their door. They do not want to look after patients indefinitely in intensive care, which is what often happens when you save a life. Just because you’re saving a life, doesn’t mean they don’t need intensive care for some time to come. So, there are all these competing factors when someone is in intensive care. And you need to be aware of them because if you’re not aware of them, you’ll fight a losing battle. You will fight a losing battle. You need to be aware of the competing forces. You need to be aware of intensive care teams’ agendas, and you need to be aware of people’s rights.
Here is another example to illustrate things to you. First of all, the biggest challenge for families in intensive care is that they don’t know what they don’t know. They don’t know what to look for. They don’t know what questions to ask. They don’t know their rights and they don’t know how to manage doctors and nurses in intensive care. That’s number one.
Number two, everything in a hospital, everything, has a policy. Whether people are mopping the floor, whether people are washing windows, whether they’re cleaning the desk, everything in a hospital has a policy. So, what makes you think that when it comes to end-of-life decision-making, there is no policy around that? And what makes you think that this policy says, “Intensive care can stop treatment whenever they like?” Because that’s what they’re trying to tell you. That is what they’re trying to tell you. Think about this. This is crazy. And it’s simply not accurate. I have not been in a situation where we couldn’t argue on a policy level. It’s enough to argue on a policy level to stop them from killing people, simple as that. You only need to mention policies and then you can have all the power back.
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Anyway, giving you another example. And that’s a very fresh example, that just happened in the last 10 days. Client rings us up from LA, from Los Angeles in California. And client rings us up from LA in California, and says, “Look, my 77-year-old dad is in ICU. He’s had pneumonia. He’s had a stroke. He’s deeply sedated. And tomorrow at two o’clock, they want to stop life support because they think it’s, in the best interest” for my father to die.” And he said, “Well, but we don’t want that. And we feel like they’re giving us no other choice.” I said to the client at that time, I said, “Okay, how much time do we have?” We only had a couple of hours. It was 12 o’clock Pacific Time in Los Angeles. And he said, “Look, we’ve only got a couple of hours because they’re telling us at two o’clock, we are going to stop life support. And we should say our goodbyes.” And that’s how I always felt when I was working in intensive care. That’s like going to an execution. It’s like you stop life support at two o’clock, that’s like executing people and I’m just not okay with it. In any case, the hospital in this situation also was smart enough to get all the parties they thought they needed for support lined up. They spoke to the “ethics committee.” Now you got to digest that. They spoke to the “ethics committee” and sought approval from the “ethics committee” to stop life support. Now that’s very ethical, isn’t it? If the “ethics committee” gives the approval to stop life support, what a disgrace. What a disgrace.
Anyway, cutting a long story short, I said to the client at that time, “Okay, we’ve got a couple of hours. Let’s get on a call with the doctors and let’s stop them from doing what they’re doing.” So, we got on the call to the doctors and the first thing we asked them was, “Can we have a look at policies and procedures? And can you stop them from removing life support? Because it’s unlawful, it’s murder, it’s euthanasia.” And we asked for the policies, and we used all the right words that we would sue them for murder, that it’s potentially murder or euthanasia, and that we would go to the Supreme Court and that we would get an attorney and that we would act very quickly. And we also then, spoke to the “ethics committee” and asked them how would they dare to make such an unethical decision to kill someone?
Cutting the long story short, we managed to turn the situation around like we have with many other clients. And now about 10 days later, this situation looks very, very different in terms of the client now having a tracheostomy. He’s off sedation. He’s opening his eyes. He’s had time off the ventilator and he’s living. He’s alive and he has a fighting chance. Compare that to sedating someone deeply and aiming to sedate them even deeper, to move them towards comfort care, sedate them even deeper, remove life support, remove the ventilator, and then let them die, let them suffocate. So, the assessment of the intensive care team was extremely wrong.
Now, there’s no guarantee that this patient is going to survive. There’s never a guarantee, but what the guarantee is, that the patient now has a fighting chance. That’s the guarantee. That is the guarantee, to have a fighting chance. And the improvement has been dramatic. And also, now the patient, now that he’s awake, well, ask the patient what he wants. There’s plenty of time to talk about end-of-life if that’s the direction the patient wants to go. Plenty of time to talk about end-of-life. No rush. What’s the urgency? What’s the rush with killing someone? Where’s the urgency in that? The urgency is intensive care units need beds. That’s the urgency. They want to save money. They don’t see it as a good business case. Let’s move towards killing someone.
So now, one week later, we are having a very different discussion with the intensive care team. We’ve now advocated for a tracheostomy. He also had atrial fibrillation last week, a very high heart rate. He seemed to be in a lot of pain. He has now been reviewed by a cardiologist to treat the atrial fibrillation. Pain medication has been changed, and he seems to be so much more comfortable.
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Now, another thing that intensive care teams don’t tell you is simply, with the rise of services like Intensive Care at Home, one option is, let’s do a tracheostomy and let’s have the quality of life at home if they can’t be weaned off ventilation. Or in some instances, let’s provide palliative care at home if that’s the direction it needs to go. You can have palliative care at home. You can have a quality of life at home, for somebody living on a ventilator sometimes for many years to come. Who is the intensive care team to say what quality of life needs to look like? It’s up to you. Up to you, up to the patient what quality of life is acceptable for you. Not up to the intensive care team. Definitely not.
So, the bottom line is this. I want to empower you here in these videos. I really want to empower you. And I want to showcase you that you are not powerless. You believe you are because you’re buying into everything they’re telling you. The reality is, that intensive care teams are not even telling you 50% of what’s happening. And when we start working with clients and we ask, we get on a call with the doctors, we review medical records, and we open a whole different world for our families in intensive care, because we ask all the right questions. We understand intensive care inside out. So, we ask all the right questions. We bring transparency in.
That was another thing that we did with all these clients. We requested access to the medical records. So, there’s no more hide and seek. So, you can actually really look at what’s going on. Once you have access to the medical records, once you have someone like myself or one of my team members to talk to the doctors directly, you will see the dynamics change. You will see the dynamics change. Once you have someone on your team that can ask all the right clinical questions, you will see the dynamics change. In all of the examples that I’ve given you today, the conversation turned from, “Oh, tomorrow at two o’clock we need to stop life support because it’s, “in the best interest” for your loved one to die” to “Okay, what are other treatment options?” That’s a very different conversation to have. A very different conversation to have. And then all of a sudden, the situation goes from, “Okay, it’s “in the best interest” for your loved one to die” to “Okay, how can we wean your loved one off the ventilator? How can we do a tracheostomy safely?” And then try and wean them off the ventilator, get them home, get them to rehab, whatever the next steps are. That’s a very different conversation to have. And if you’re starting palliative or comfort care, and you’re giving medications such as midazolam or Versed, propofol, fentanyl, morphine, that’s euthanasia. You are hastening death, and that is illegal. And that is unfortunately what’s happening in intensive care all day, every day, all around the world. And it needs to stop. Needs to stop.
Anyway, we’re here at intensivecarehotline.com to educate you and advocate with you and for you and get the outcomes that you want for your loved ones in intensive care and hold intensive care teams accountable to do the right things. And I also need to say that, there are a lot of good things happening in intensive care, but obviously, we are dealing here mainly with the outliers. That’s what we are focused on, that’s what we specialize in. Again, as I said, the majority of patients in intensive care survive, but when people come to us and ask for help, they are in a really dire situation. They don’t know what to do next.
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I also want to encourage you to ask questions before we wrap this up. I try to keep those livestreams to about 30 minutes. So, I really would like to encourage you to ask any questions, if you have any. Type them in your chat pad so I can get to them. Would really like to help you out with any of your questions.
But anyway, so I hope that was a good livestream today, that you got the message that do not buy into the intensive care teams’ doom and gloom. Do not buy into the intensive care teams’ paradigm. You can change the paradigm. We are changing the paradigm here. You can question, you have to question. Once your loved one is gone, they’re gone. They’re gone for good. There’s no return from that.
I can’t tell you, maybe just as a final thought, we have so many families come to us that have lost a loved one in intensive care where they say, “Look, we at the time agreed to stop life support because we didn’t know any better. We thought we didn’t have any chance.” And then, they find our information at intensivecarehotline.com and they then, are devastated. They’re devastated, that they said, “We didn’t know we had a choice.” Of course, you have a choice. You always have a choice. You just need to exercise it. And then they often come to us, and they want to have the medical records reviewed when it’s too late, but we can very quickly confirm with them that their loved one was killed without their consent. And that it’s illegal. So, what do you do with that information when it’s too late? You can take people to court, but wouldn’t you have your loved one being alive in the first place?
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Okay. So, let’s wrap this up for today. Ask your questions now, before I go.
If you have a loved one in intensive care, go to intensivecarehotline.com. Call us on one of the numbers on the top of our website, or simply send us an email to [email protected].
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Now, if you liked this video, give it a thumbs up, subscribe to my YouTube channel, and also let me know what questions you have. Type them below this video, very happy to answer them.
I also offer one-on-one professional consulting and advocacy, and have a membership for families in intensive care at intensivecaresupport.org. You can find more information on our website.
Now for next week, the topic for next week will be, “10 things the intensive care team is deliberately withholding from you!” That’ll be a very interesting topic next week. I’m looking forward to seeing you there.
Take care for now. Hope you have a great week.
Thank you for watching.
This is Patrik Hutzel from intensivecarehotline.com and I will talk to you in a few days.
How can you become the best advocate for your critically ill loved one, make informed decisions, get peace of mind, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?
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In Your FREE “INSTANT IMPACT” report you’ll learn quickly how to make informed decisions, get PEACE OF MIND, real power and real control and how you can influence decision making fast, whilst your loved one is critically ill in Intensive Care! Your FREE “INSTANT IMPACT” Report gives you in-depth insight that you must know whilst your loved one is critically ill or is even dying in Intensive Care!
Sign up and download your FREE “INSTANT IMPACT” REPORT now by entering your email below! In your FREE “INSTANT IMPACT” REPORT you’ll learn how to speak the “secret” Intensive Care language so that the doctors and the nurses know straight away that you are an insider and that you know and understand what’s really happening in Intensive Care! In your FREE report you’ll also discover
- How to ask the doctors and the nurses the right questions
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
- How to Eliminate fear, frustration, stress, struggle and vulnerability even if your loved one is dying
- 5 mind blowing tips & strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
- You’ll get real world examples that you can easily adapt to you and your critically ill loved one’s situation
- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
- You’ll get crucial ‘behind the scenes’ insight so that you know and understand what is really happening in Intensive Care
- How you need to manage doctors and nurses in Intensive Care (it’s not what you think)
Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
Make sure you also check out our “blog” section for more tips and strategies or send me an email to [email protected] with your questions!
Also, have a look at our membership site INTENSIVECARESUPPORT.ORG for families of critically ill Patients in Intensive Care here.
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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