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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
How to Stay Positive Amidst Negative Reports From Doctors About my Loved One’s Condition in the 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 ICU team from withdrawing life support without your consent.
Your Questions Answered Live: How to Stop the ICU Team From Withdrawing Life Support Without Your Consent?
This is Patrik Hutzel from Intensive Care Hotline and Intensive Care at Home. And I want to welcome you to this live stream. Today’s topic is “How to stop the ICU team from withdrawing life support without your consent”. And this is a very hot topic for families in Intensive Care. It’s also a very hot topic for me personally.
Some of you that have seen my blogs or my videos over the years would know that I work in Intensive Care for over 20 years. For over five years, I was a nurse unit manager. So I’ve had enough behind the scenes insights and obviously enough exposure to bedside nursing.
And I can probably write a book about this particular topic. And today I want to condense it to about half an hour talking about this topic, obviously wanting to hear your questions.
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Helene, thank you for coming on to this call or to this live stream. And I would definitely want to encourage you to type your questions into the chat pad so I can answer those questions. So, yes, I can probably write a book about this topic but I do want to condense it to this half an hour, 40 minutes that we have today. And, to give you a little bit of background, so I worked in Intensive Care for over 20 years in three different countries for over five years. I’ve managed ICUs. I was involved with managing staff, managing doctors, working with the hospital executive, directors of nursing, medical directors, and the whole nine yards.
And one thing that I’ve learned the hard way is simply that often a withdrawal of treatment or stopping of life support is often one way to manage resources in ICU. If you have a patient pass away that frees up a bed in ICU and the next patient in ICU is not far away, it’s never far away. ICU beds are in short supply, they’re in high demand and that’s one way to manage limited resources.
But first of all, before we dive deeper into this topic, like this video, comment down below what questions or insights that you have and subscribe to my YouTube channel where you get updates and live streams for families who have a loved one in Intensive Care.
So as I was working in ICU, when I was a junior nurse in ICU all you do is you learn the ropes, you learn the clinical side of things. And then as you progress in your career, you get more experienced. You understand, you have a better understanding how things work, and you have a better understanding about the mechanics in Intensive Care, about the business models, about constraints of resources.
So as I then was progressing in my nursing career, and then I realized, well, a lot of patients in ICU die unnecessarily. They die because the Intensive Care team “sells” the families that the only option and the “best option” for a particular patient is death. Now, let that sink in. Let that sink in that the only option and the “best option” is death for a patient. You don’t have to be religious or spiritual to know that this goes against humanity. Its common sense to preserve life at all cost. And don’t get me wrong, there might be situations where someone has an advanced care plan where its pre documented that they don’t want to live on a ventilator, for example. And I can accept that too. But the reality is that 95% of patients in ICU don’t have an advanced care plan. They don’t have a living will where it’s documented what they want if they end up in ICU. But let’s illustrate that whole issue with some practical examples that I can give you. I got tons of them. Let’s just start with the ones that were most vivid for me, from my experience in ICU.
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So there was this young lady that I looked after. She would’ve been in her early 40s, with two young kids. The kids were under the age of 10. She was diagnosed with breast cancer and she has end stage breast cancer. We knew she was in ICU with the pneumonia after chemotherapy and we knew it was sort of end of life. However, the challenge was that the hospital or the doctors in Intensive Care had decided to remove life support without a discussion with the patient or with the family. They were just deciding that on an “executive level” and ICUs are very good to pretend that they can make those decisions in a vacuum. There’s no controlling force.
Now, think about this logically. That they can basically make life or death decisions without anyone questioning them. But unfortunately 99% of families buy into that frame of mind. They buy into that vacuum. They almost get sucked in and think, “Oh, the doctors, they always know what they’re doing. And if they think we need to stop treatment, then we need to stop treatment. If that means my loved one is dying, well, so be it. The doctors must know what they’re doing.” Well, they might know what they’re doing unless it’s challenged. And your job is to challenge. My job is to challenge.
I’ve certainly challenged this many times when I worked in Intensive Care. And again, your job is to challenge. Your job is to preserve life. Your job is to make sure that your loved one gets the best outcomes. Intensive Care teams are very quick to say that, if treatment was to be continued, that your loved one won’t have any “quality of life” outside of intensive care. Well, that’s ridiculous. ICU teams don’t even know what life looks like outside of Intensive Care. They’re so stuck in their bubble that it’s Intensive Care. They don’t even have the time nor do they know what life outside of Intensive Care looks like if a patient survives.
Now, here are also some stats. Here are some stats. 90% of Intensive Care patients survive. Now, that’s not talking about quality of life. That’s not talking about what life looks like for those patients in six months’ time. Are they even still alive in six months’ time? Nobody knows. But, the odds are in your loved one’s favor. The odds are in your loved one’s favor. 90% of ICU patients survive. They go into Intensive Care and they leave intensive care alive. So your question needs to be, why would my loved one not beat the odds? Why would your loved one not be surviving? The odds are for your loved one, not against your loved one.
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So keep that in mind at all times. 9 out of 10 survive. So you need to question straight away, as soon as there’s talk about withdrawal of life support, about end of life care, palliative care, hospice, whatever you want to call it, you need to present the ICU team with those facts, with those stats that 9 out of 10 patients actually survive Intensive Care. There’s your argument straight away. But if the ICU team is adamant as they of now that you know, this is the “best option” for your loved one, you also need to challenge them with hospital policies, state laws, potentially national laws, depending on where you are in the world. Hospital policies will clearly say that consent needs to be sought by either families, medical powers of attorneys/next of kin, whatever you want to call it, or by the patient themselves to stop life support. It’s a no brainer.
It’s an absolute no brainer. And yet families struggle. Families in Intensive Care struggle to challenge the very death of their loved ones. They struggle with that. They’re so challenged by the whole admittedly intimidating environment. Intensive Care is very intimidating, but that’s why you need help from day one. You need to do your research from day one. Can’t stress this enough that 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. And here comes the most important part for this topic today. They don’t know their rights. They don’t know their rights and you actually do have rights. And last but not least, they don’t know how to manage doctors and nurses in Intensive Care.
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- YOU DON’T KNOW WHAT YOU DON’T KNOW WHEN YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE! (PART 1)
- YOU DON’T KNOW WHAT YOU DON’T KNOW WHEN YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE! (PART 2)
So, you’re not driving a car without a driver’s license, without doing some test driving, without going to driving school. Now, how can you as a family go into Intensive Care and not learning about it as quickly as possible? How can you leave the life of your loved ones just in the hands of doctors and nurses and not do your own research? Doctors and nurses are not infallible, not at all. We’re all human. We’re all prone to making mistakes. But by you not doing your research, by you not seeking professional guidance like we do here at intensivecarehotline.com, you are doomed. You are doomed.
So also with the existence of services like Intensive Care at Home, where patients go home on tracheostomy, on ventilation, sometimes even on inotropes or vasopressors, with Intensive Care nurses and with medical oversight, life can be extended and it can be extended in an environment where people want to live. And that is a home care environment. People don’t want to live in an intensive care unit, of course not. They do want to leave at home. So, I argue that when I say 90% of Intensive Care patients survive that the 1 out of 10 that doesn’t survive. Some of those people could leave at home on life support. And again, part what we do here is also the Intensive Care at Home. And you should check out intensivecareathome.com for more information there.
Going back to you Helene. So, you would’ve been the Power of Attorney for your mom and surely we review medical records all the time as part of our service. And we do find some… Or we can’t really be sure whether hospitals potentially avoid placing some documents on the medical records, but that’s in this day and age, it also often is electronic. So, yeah. The pulmonary doctors lied to you that your mother couldn’t go home on a ventilator. Yeah, of course. They’re lying to you. For sure.
We’ve done hundreds of thousands of hours now with Intensive Care at Home where the concept is working beyond any shadow of a doubt. And the concept of Intensive Care at Home has been around now for over 20 years, started out in the late 1990s in Germany. And we’ve certainly brought it out into the world now. It’s a no brainer. People can go home on a ventilator, can go home with a tracheostomy. They can go home for end of life care, all sorts of things can be done at home now.
So, yeah. But coming back to more practical scenarios and practical guidance for you, if you do have a loved one where the ICU team comes to you and says, “Look tomorrow at one o’clock, we want to stop life support for your loved one and we’re going to take out the breathing tube. We’re going to stop all medications. We’re going to stop other life supports such as inotropes or vasopressors and so forth.”
So I have those situations. I’ve had those situations either as a bedside nurse or I’ve also had those situations here in my intensivecarehotline.com practice. So, I can give you an example. We had this one client a few years ago that came to us and said, “Look, my dad had a stroke. He’s 57. He’s now in ICU. The ICU team wants to withdraw life support tomorrow at 1:00 PM. They’re going to take out the breathing tube and they stop vasopressors and inotropes.” When we looked at the situation we thought, “Okay. Well, there’s a very high chance that if that was to happen, that their loved one is going to die pretty quickly.” We very quickly asked for the medical records. We looked through the medical records, which you, by the way, have every right to access. You have every right to access medical records. Don’t let the hospital say you can’t have access to the medical records. No. All of our clients always can get access to the medical records. Always.
So anyway, we looked at the medical records and there was a DNR or Do Not Resuscitate order/ NFR, Not for Resuscitation order placed without the family’s knowledge, without the family’s consent or the patient’s consent. The withdrawal of treatment for the very next day was made without family input, without family consent. And obviously what we advised that family to do is go to court. Go to court, seek an injunction very quickly because the hospital was breaching all rights of families. They were breaching all hospital policies, state laws. They were breaching everything. And it didn’t take very long for the court to rule within less than 24 hours that the hospitals stands to withdraw treatment is illegal, was illegal. And therefore, the hospital had to continue treatment. And to this very day, this patient is still alive. This has been a few years ago now. And I could give you other examples when I was a bedside nurse and I was doing the same as advocating for clients. And therefore, the hospital had to continue treatment. So, you have every right to challenge. And I can’t believe how many families come to us and they say, “Oh, there’s nothing we can do. Or the hospital is telling us that it’s a medical decision to stop treatment.” And that’s just a whole lot of nonsense, whole lot of nonsense. Again, life or death decisions cannot be made in a vacuum. It can’t be made in a vacuum.
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The more information you have about Intensive Care, the more power you will have. You want to be in a position where you can have peace of mind, control, power, and influence. Let me say that again. You can be in a position where you can have peace of mind, control, power, and influence, and where you can make informed decisions. Most families don’t believe that, most families thinks they have no power, they have no control. They take everything at face value, take everything at face value. I would argue that every day in Intensive Care all over the world, every day, people are dying because families have no idea how to challenge. Families have no idea about their rights. Families buy into whatever the Intensive Care team is telling them.
Helene, you are saying that when your mom was on a T-piece, one liter at room air she ended up going to LTAC because the pulmonary refused to decannulate your mom, but LTAC, they told me, “Your mother is too well to be here.” Yeah, sure. It all comes down to getting people in that can provide you with a second opinion that can guide you in this challenging situation. Look, I worked in Intensive Care for over 20 years, but it takes at least 5 years working there before you can really put the pieces of the puzzle together and how can you as a family understand how the system works. And yes, Helene, money is an issue too. Of course, they are running businesses. They are running businesses, but that’s even more so important. It’s even more so important why you need help to steer the system, to navigate the system.
The bottom line is this, if you understand how the system works, and if you understand that you have rights, and if you understand that there are people out there that can help you, you will have a very different approach and you will actually get the best care and treatment for your loved one. If you following blindly of whatever the Intensive Care team is telling you, you’re lost. Your loved one is probably going to die or will have a less than desirable outcome.
Now, I also have to throw in here, while it sounds like we are talking about all Intensive Care Units here. That is not the case. Even though it feels like we are talking about all Intensive Care Units, there is some very good Intensive Care Units out there that do everything that is in the best interest of a patient. But obviously the people that resonate with our message here, with my message here are the people that have been exposed to Intensive Care Units that are unethical. Where money is the main driver and not compassionate towards patients and families.
So, that’s the reality. So other examples that I can give you are, I remember I was looking after a patient many years ago that had a massive brain bleed after they fell off the roof of their house. And I do remember that again, the ICU team was adamant about stopping life support at 10 o’clock at night or whatever it was. And I was on shift and I was asked to stop life support and I refused. I said, “I’m not going to withdraw life support.” I said to the doctor, “If you want withdraw life support, do it yourself.” And I asked for an urgent family meeting because the family wasn’t ready for that. It wasn’t about that we couldn’t accept that the patient was dying. The patient was dying. There was no question around that, but it was about how is that patient going to die?
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What does the family want? How does the family want that end of life situation look like? And in the end, again, I was arguing on that the hospital was breaching all hospital policies, potentially state law and so forth. And we made sure that the family had an end of life situation on their terms, not on the hospital terms. The hospital terms was, “We need to stop life support now because we need the ICU bed tomorrow morning for the next patient.” That’s not what they said, but that’s what I knew what was happening in the background. It’s always happening in the background. And imagine, as of the recording of this video in August, 2021, we are still in the middle of a pandemic, which means ICU beds are in even shorter supply than they normally are.
So the withdrawal of life support at the moment is the cases of patients withdrawing or ICU’s wanting to withdraw life support against family’s wishes or patient’s wishes probably going through the roof. Probably going through the roof. So this video is very timely. It’s very timely at any time, but at the moment with the pandemic, it’s even more timely.
So Helene, you’re saying, “What about when they put my mom on a ventilator? They knew it was malfunctioning. This happens to my mom in 2012.” How do you know Helene that when they put your mom on the ventilator, that the ventilator was malfunctioning? How do you know that was the case? Have you got medical records? You’re saying again Helene, “What about overused, unsubstantiated handcuff restraints placed on patients beyond 24 hours?” Oh, absolutely. That is a massive issue. I could not agree more with you that this is a massive issue in ICU. And unfortunately, this is still common practice in ICU, as far as I’m aware. There has to be some stringent documentation if doctors order that. Has to be some very stringent documentation around restraints. Unfortunately, it’s common practice. The question there often is, you got to weigh up between chemical restraints, which is sedation, opiates or mechanical restraint. And that’s a tough choice to make. If you do the chemical restraint with sedation opiates, you have massive side effects such of muscle wastage, recovery times prolonged, potentially the need for a tracheostomy. Whereas if you have mechanical restraint or mechanical/physical restraint, you are at risk of physically and mentally traumatizing the patient. Unfortunately there’s no easy answer to that. If you are doing the physical restraint/mechanical restraint, you don’t need to use as much sedation and opiates. Therefore, recovery times should be quicker, but then on the other hand, you have a patient being awake and restrained, can’t talk because they’ve got the breathing tube. “Do you traumatize a patient because of that?” I don’t have the answer to that, Helene but it’s certainly an issue that is prevalent in ICU.
So coming back to, that I argue every day, all over the world in ICU, people are dying, because families don’t know their rights when it comes to withdrawal of treatment. They don’t know their rights and they don’t have anyone advocating for them. They are intimidated by the intensive care team. And I can help you with that. We can help you with that here in Intensive Care Hotline. Me and my team, we can get on the phone with you with the doctors. We can hold them accountable. We can ask them all the right questions. We can ask those questions you haven’t even considered asking.
When families come to us, they give us 10% of the information that we need to know to guide them. And that’s why I’m saying, you don’t know what you don’t know. Families 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.
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So you need to know what you’re up against. And lives can be saved. There’s a lot of families that come to us. Oh, they have a loved one in intensive care for 3 days and the ICU team is already talking about withdrawing life support. It’s already about letting a patient die. That’s three days in ICU. That’s not very long. 3 days in ICU is nothing. It’s not a long time. Therefore, you need to get back from day one of ICU. Day one of ICU. If you don’t do your research day one in ICU you’d probably be fighting an uphill battle, probably fighting an uphill battle.
Helene, you’re saying, “because retaliation against me because I made a grievance complaint. Another respiratory tech caught it and replaced malfunctioning ventilator.” Sure. Look, Helene. All I can say is that, look as part of my ICU nursing, we have hooked up patients to a malfunctioning ventilator and we didn’t know, or to a malfunctioning respirator and we didn’t know. It does happen. As long as it can be replaced quickly, which usually shouldn’t be a big deal because there should be enough ventilators in ICU. It shouldn’t be a big deal. It does happen. There is malfunctioning equipment in ICU. As long as people are recognizing it and as long as people are changing it and take all the right steps, it shouldn’t be a big deal, really.
So understand your rights. Understand that there is help out there. Ask all the right questions and get help. Get help. Do your independent research. Don’t take everything for face value. You are in a life or death situation when you have a loved one in Intensive Care. How can you not do your research when you have a loved one in Intensive Care? That’s like having your house burned down and not calling the fire brigade. It’s the same. You need to get outside help. And you can just start by looking at intensivecarehotline.com. We have hundreds of blog posts, hundreds of case studies, hundreds, if not thousands of videos now that you can just start watching or reading. And of course, if you wanted some of my time directly or some of my team’s time, yes, we are selling our time. And we have several consulting advocacy options where we charge a fee.
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But then you have access to me directly over the phone or access to some of my team members over the phone via email and we guide you step by step. And we are also participating in conversations with the doctors with you. We can set up conference calls, we can help you in family meetings. We can help you in daily updates with the doctors, we can get on the phone when you have the daily updates with the doctors when you have a loved one in intensive care, and you will see that the dynamics will change in your favor very, very quickly. Very, very quickly.
Helene, you’re saying, “Will I do a topic about patients with ARDS that is on a ventilator? How do patients get ARDS while on a ventilator?” Yeah, I can. Thank you, Helene for suggesting that. Yeah, I can do that because at the moment, especially with COVID, a lot of patients are on ARDS on a ventilator. It’s probably a very timely topic. ARDS happened before COVID but at the moment, a lot of patients that do go into ICU with ARDS is secondary to COVID. It’s actually a very good point, Helene. Maybe I should do that next week, actually next Saturday. Talk about that topic because at the moment we have so many inquiries from families that have a loved one in ICU with COVID, with ARDS. It’s a very timely topic. Yeah. Very good point.
So, yeah. But that’s how you can shortcut getting influence while you have a loved one in Intensive Care. Get me or someone on my team on a call with the doctors or with the nurses, ask all the right questions and you will see the dynamics change in your favor at the drop of a hat, really.
So that’s it for today’s topic.
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If you have any more questions, I’ll give you a couple of more minutes to type your questions in the chat pad. And then I want to wrap this up.
Again, check out intensivecarehotline.com. You can also check out intensivecareathome.com where we provide intensive home care nursing service for mainly long-term ventilated patients with tracheostomy at home, which includes also palliative care, but also ventilation weaning. Go and check that out.
I really want to thank you for coming onto this live stream. I really appreciate you and your questions. Appreciate you taking time out of your day. And I hope you were getting the message that there is help out there if you have a loved one in Intensive Care.
Go and check out intensivecarehotline.com. Call me on of the numbers on the top of the website.
US: 415-915-0090
UK: 0118-324-3018
Australia: 041-094-2230
Thanks again for coming on to this live stream. And I’ll talk to you next Saturday, 8:00 PM, Eastern Standard Time. 10:00 AM, Australian Eastern Standard Time on the Sunday. Again, 8:00 PM Saturday night, next Saturday, Eastern Standard Time US, which is 10:00 AM, Australian Eastern Standard Time, Sunday. Next Sunday. Thank you for your time. Thank you for your comment. And I’ll talk to you all again next week. Take care.
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!
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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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