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Hi, it’s Patrik Hutzel from intensivecarehotline.com with another quick tip for families in intensive care.

So, today’s tip is about a question that we had from a reader who asks, “The ICU team wants to turn my dad’s life support machine off. How can I make an informed decision?” Now, that’s a great question to ask and it’s a question we get all the time. So, let’s just focus on how you can make an informed decision in a situation like that.

So, when families in intensive care are faced with such a confrontational situation, you’ve got to ask all the right questions so that you can make an informed decision.

So, the first question is why does the intensive care team want to stop life support for your dad? Do they have the right to do so? I can tell you given that we are consulting families all around the world, but predominantly in the U.S., Australia, U.K., Canada, and Ireland, you will find that in most jurisdictions, intensive care teams can’t just withdraw life support without a patient or family’s consent.

So, Number 1, I argue it’s illegal.  We have turned many situations around such as the situation like you’re describing by successfully intervening and by pointing out local laws, policies, procedures, guidelines that withdrawing life support without patient or family consent is illegal. It’s unethical, it’s amoral.

Intensive care teams might argue that it’s unethical to continue life support. Well, I strongly disagree there, especially if it’s without a patient or family consent. If patients or families have an advanced care directive, that life support should be stopped, then that’s a different story. But I presume that with Rosie, with your situation here, that your dad has no advanced care directive, otherwise you would have probably pointed that out.

So, by having intensive care teams telling you that, “Tomorrow at three o’clock, we are withdrawing life support”, that can feel very confrontational. It’s might feel like setting up an execution or a killing. Those are strong words. I’m well aware that I’m using strong words here, but I have been in those situations myself in intensive care where I actually refuse such orders and successfully so because no one can force anyone to literally take someone off life support without consent from patient’s family, but also without consent from health professionals. So, those are the first questions you need to ask.

The next question you need to ask, Rosie, is your dad in a real or a perceived end of life situation? So, what do I mean by that? So, what I mean by that is I have made videos about the difference between real versus perceived end of life situations in intensive care.

So, what’s a real end of life situation? A real end of life situation is if someone is in intensive care, on life support, on multiple forms of life support, and no form of life support, no surgery, no nothing can help to save a patient’s life. No matter what has been done and what will be done, a patient will actually pass away whilst on multiple forms of life support, that is actually a real end of life situation.

Now, I argue that if your dad is on life support and they want to stop life support, that means he has probably a very good chance to survive and therefore he is in a perceived end of life situation. It’s just a perception he can probably live even if it is on life support.

Now, the next question that you need to ask, Rosie, is what levels of life support is he on? Is he just on mechanical ventilation? Is he on dialysis? Is he on vasopressor and inotropes? Is he on ECMO (extracorporeal membrane oxygenation)? Does he have an RVAD (right ventricular assist device) and LVAD (left ventricular assist device)? The question is slightly vague because he might be on more than one form of life support and you wouldn’t even know because, like I say over and over again, 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.

Also, like I always say, the intensive care team has probably not even told you half of the story. Now, I do 1:1 consulting and advocacy for families in intensive care. I know from experience if I get on a call with a client and with the ICU team, I ask questions that families haven’t even considered asking which means, again, you don’t know what you don’t know. Intensive care is a highly specialized area and unless you’ve worked in the space for decades, like I have, you wouldn’t even know what to look for and you wouldn’t even know what questions to ask. So, that’s really how we turn these situations around.

Talking about turning these situations around, we have turned dozens of those situations around for our clients where clients come to us and say, “Well, tomorrow at three o’clock, the ICU team wants to literally kill my loved one by switching off life support.” And once again that is illegal. Once we do the work for the clients, we always turn these situations around.

ICU teams are very good to pretend they’re operating in a vacuum, and they can do whatever that they like, and they can just kill someone. Well, that is a whole lot of nonsense. Like I said, we have turned many situations around just by our interference by reminding ICU teams that they can’t do it, but they would always try and push and see whether the families let them get away with it and not take action. So, be mindful that you have rights, you just need to exercise them, and you also need to know what rights you need to exercise. And again, that is where our area or my area of expertise is coming in every single time.

Now, other things you need to look for Rosie is with a service like Intensive Care at Home, there might be an option for your dad to go home, even if he needs life support. At Intensive Care at Home, we are providing intensive care at home with critical care nurses at home. We’re basically replicating an intensive care bed at home.

We do that with critical care nurses and of course medical oversight and your dad might be in an end-of-life situation. He might need palliative care at home. He might need quality of life at home or, or quality of end of life at home. But again, we can provide that for you assuming that he can live at home with life support. So, go and check out intensivecareathome.com for options for you.

So, I hope Rosie that really helps you to make informed decisions in such a very confrontational situation. But know that you have rights and know that they can’t just take your dad off life support without your dad or you as the medical power of attorney consenting to it. Please contact us as a matter of urgency if you need more help here.  You can do so if you go to intensivecarehotline.com. You call us on one of the numbers on the top of our website or simply send us an email to [email protected].

Also, have a look at our membership for families in intensive care at intensivecaresupport.org. There, you have access to me and my team, 24 hours a day, in the membership area and via email and we answer all questions, intensive care and Intensive Care at Home related.

Now, if you need a medical record review, please contact us at intensivecarehotline.com as well. We review medical records in real time and give you a second opinion, which is what you probably need here, Rosie and you need it fairly urgently. We also provide medical record reviews after intensive care if you have unanswered questions if you need closure or if you are suspecting medical negligence.

And also, like I said, Rosie, go to intensivecareathome.com for more information for home care options for your dad with Intensive Care at Home. Currently, we are operating all around Australia in all major capital cities and also in rural and regional areas. But if you’re in the U.S., you should contact us as well as well as if you’re in the U.K.

Now, subscribe to my have a look at our membership for families in intensive care at intensivecaresupport.org for regular updates for families in intensive care, click the like button, click the notification bell for the next video, share the video with your friends and families and comment below what you want to see next or what questions and insights you have from this video.

Thank you so much for watching.

This is Patrik Hutzel from intensivecarehotline.com and I will talk to you in a few days.

Take care for now.

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