Hi, it’s Patrik Hutzel from intensivecarehotline.com with another quick tip for families in intensive care.
So, today’s tip is about a 15-minute consulting call that I had with a client yesterday. Client initially reached out with an email. In the email, the client says, “My 78-year-old dad had severe TBI.” TBI stands for Traumatic Brain Injury. “No more sedatives in his blood and still didn’t respond for two days after. We let ICU withdraw treatment and he passed. Should we have waited longer?” Now, the short answer is yes. You should have waited longer, absolutely.
Now that I also had more context around her dad’s situation because I spoke to this lady. So yes, he had a severe TBI after a bicycle crash. He fell on his head, had no helmet on. Now, they withdrew life support after two days of stopping sedation. She says in the email, “No more sedatives in his blood.” Now, I argue straight away that can’t be accurate.
Now, why can’t it be accurate? Because yes, he was on propofol, but also on Midazolam. Propofol is short-acting so as soon as you switch off propofol, it should disappear out of the body in a short period of time. But he also was on midazolam, which is long-acting, but what she didn’t know was that it’s not only propofol or midazolam, also known as Versed. It’s also opiates such as fentanyl or morphine that are given that also delay waking up in ICU and two days in ICU is not a long time, even two weeks of not waking up is not a long time. Let me explain in more details.
So, her dad had a severe TBI, and he had high ICPs, high intracranial pressures, and he had a subdural hematoma as well. Of course, there would have been high intracranial pressures and that certainly can cause irreversible brain damage. I’m not disputing the severity of this man’s injury.
Now, sometimes patients that are in an induced coma without a brain injury or without a neurological condition need more than two days to wake up after sedation has been stopped for all sorts of reasons, including but not limited to kidney failure, liver failure, people being critically ill, and simply needing to rest, and that includes the brain shutting down and not being ready to wake up. So, that’s one obstacle that can get in the way of people waking up. That is for people without a brain injury.
If just someone goes into ICU might, sort of, a standard example is with a pneumonia. They get on a breathing tube on a ventilator in an induced coma, then they are put in an induced coma for a few days. Ideally, they get extubated, have the breathing tube removed, and then they’re still not waking up properly, or they may not be able to be extubated because they’re not waking up even though sedation and opiates have been switched off for a few days. I’m seeing that countless times. So, to put this in perspective for our patients with getting off sedation and a brain injury, it can take even longer.
So, I also challenged this lady a little bit. What she didn’t say in the email is, it’s been six months ago when this happened. So, her father passed away about six months ago. I said to her, I challenged her a little bit. I said, “Why are you reaching out to me now if you were so certain to remove life support then?” She didn’t really have an answer for that. I presume like most other families; they have second thoughts.
So, we have countless families in intensive care reaching out to us in similar situations saying things like, “Well, a year ago, two years ago, my mom was in ICU, my dad was in ICU, my spouse was in ICU”, whatever the case may be. They’re saying, “We agreed to withdraw life support and now we’re having second thoughts. Now we’re reading the website at intensivecarehotline.com. We’re reading case studies at intensivecareathome.com and we didn’t know that there were alternatives, whether (A), it’s advocacy and consulting or, (B), it’s an option like Intensive Care at Home.” And they say, “Well, the intensive care team certainly didn’t tell us anything about our rights or about the Intensive Care at Home.”
Once 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. That’s exactly what this lady is dealing with.
Now, here is another thing that she said when we were on the call, she said, “I didn’t want my dad to live as a vegetable and he didn’t want to be a vegetable.” Now, I believe that labeling people as vegetables is horrible. I don’t think that anyone should be labeled as a vegetable. That is dehumanizing, the very essence of a human being. Just because someone has special needs or decides to live with special needs doesn’t make them a “vegetable”. It’s I think we, as in the medical field or nursing field, we need to move away from these terms because they are dehumanizing people.
So anyway, so what am I saying here? What I’m saying is clearly, what is the hurry in intensive care to remove life support? Why are we rushing towards end of life as quickly as possible? Well, my answer is that intensive care units do not want to do what families want and they paint all the doom and gloom pictures. They’re creating this narrative of people suffering and having no quality of life.
I’m the first one to admit, I do believe that people suffer in intensive care. There’s no question about that, but people also want to live and most of them are ready to suffer when it comes to prolonging their lives.
In any case, I also strongly recommend if you are faced with a similar situation, make decisions that you think you won’t regret in 12 months’ time. Now, if you are thinking, “Well, tomorrow, I’m going to agree to withdraw life support on my family member.” Will you regret that in 12 months’ time?
Obviously, this lady did because now she’s having second thoughts and she believed the intensive care team’s narrative, and sometimes it could also come to situations like someone might be dying and that is just what it is.
But maybe then sometimes people can go home with Intensive Care at Home for palliative care and have quality of end of life at home and still empty the ICU bed, which is what ICUs want. It’s a win-win situation. You can find out more information at the intensivecareathome.com. So, just food for thought.
But if you are in a situation like this, make decisions today that you don’t regret in 12 months’ time and make decisions that are not dehumanizing your family member, that could include giving them a fair chance. After two days, it’s way too early to make a decision, maybe even after two weeks, I argue it’s too early to make a decision if someone is not waking up.
That’s my point of view after having worked in intensive care for over 20 years in three different countries where I also worked as a nurse unit manager for over five years.
So, that is my quick tip for today.
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] with your questions.
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.
I also offer one-to-one consulting and advocacy for families in intensive care. I talk to doctors and nurses directly. I can represent you in family meetings and get real and fast outcomes and results for you. We have turned many, many situations around in intensive care.
If you need a medical record review, please contact us as well. We review medical records in real time and can give you a second opinion in real time. If you need a medical record review after intensive care, if you have unanswered questions, if you need closure, or if you’re simply suspecting medical negligence, please contact us as well.
Last but not least, subscribe to my YouTube channel for regular updates for families in intensive care, click the like button, click the notification bell, share the video with your friends and families, and comment below what you want to see next or what questions and insights you have.
Thanks for watching.
This is Patrik Hutzel from intensivecarehotline.com and intensivecareathome.com and I’ll talk to you in a few days.