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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 again about, “Real versus perceived end of life situations.” And I’ve made many videos about this topic, “What is a real versus a perceived end of life situation in intensive care?” And today, I want to illustrate that again with another case study.

So currently, we are working with a client who has their 69-year-old uncle in ICU, previously fit and healthy, and the niece is reaching out to us saying, “Hey, I’m in Florida. My uncle is in California, he’s in ICU. We haven’t been able to get over there yet. And the ICU’s basically telling us that tomorrow at three o’clock they want to withdraw life support because her uncle won’t have any “quality of life” if they continue treatment now.” And I will say, I should say he won’t have any perceived quality of life because there’s a big difference between what’s reality and what’s perception.

And obviously, the niece reached out to us, seeing our blog, seeing our videos, seeing the advocacy that we’ve done for probably by now thousands of clients all over the world saying, “Look, what can we do in this situation?” I’m not in California yet, but I’m on my way to it. And I said to them, “Well, remind them of your right to decide what treatment your uncle should be getting.” And it’s certainly not end of life treatment, because end of life treatment, as we all know, results in end of life. And that’s not what her uncle wants, and that’s not what the family wants.

And lo and behold, when you look at the laws in California, treatment decisions need to be made by a patient or by a next of kin, or by a power of attorney, which this lady is. And she rings up the ICU saying, “Look, I’m on my way to California. Can you please continue treating my uncle because otherwise, I’ll get my legal team on the case.” And she said, from then onwards, the tune changed completely.” And they gave in and now, her uncle is on her way to proper treatment rather than end of life care, palliative care. And I know that YouTube doesn’t want me to use strong words, but if someone withdraws life support against a patient’s or a power of attorney’s wishes, what could that be perceived as? I could be using a very strong word here, but I’ll let you fill in the gap and it’s completely inappropriate.

And this is also the difference between a real versus a perceived end of life situation. A real end of life situation, in intensive care is if there’s nothing that can be done, no surgery, no treatment, or nothing can save someone’s life, then that’s a real end of life situation. In this situation, clearly, it’s a perceived end of life situation. The intensive care team perceives that this person won’t have any quality of life, therefore, we must stop treatment and make sure this person is going to die. Whereas now, the ICU is continuing treatment and now, they’re already talking about, well, tracheostomy might be the next step. Very different conversation to have.

But you need to ask the right questions. You need to know about your rights, and you need to know what treatment options are out there. And again, it comes back to that the biggest challenge for families in intensive care is simply 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. They don’t know how to manage doctors and nurses in intensive care.

So, that’s my quick tip for today.

If you have a loved one in intensive care, go to intensivecarehotline.com and 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 in a membership area and via email and we answer all questions, intensive care and Intensive Care at Home related.

If you need a medical record review, please contact us as well. We can help you with a medical record review while your loved one is in ICU, and we can help you with a medical record review after ICU. But we obviously strongly recommend that we start reviewing notes while your loved one is in intensive care, so you can have a second opinion.

Now, subscribe to my YouTube channel for regular updates for families in intensive care, share the video with your friends and families, click the like button, click the notification bell, and comment below what you want to see next, or what questions and insights you have from this video. Do you agree, do you disagree about real versus perceived end of life situations?

Thanks for watching.

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