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

Today I have an email from Sonia who’s one of our clients that we worked with recently. Sonia had a dad in ICU in the U.K. and Sonia is part of our consulting which is from email and phone consulting. But one of the emails from Sonia I found particularly interesting that I thought I’ll showcase it here. Just for the record, Sonia, it’s not the real name of our client. It’s just to protect the identity of our clients here, of course.

“Hi Patrik,

So, my last two emails, I informed you that they have decided to take the tracheostomy out and it is looking like they want to do that on Monday. Now, as I expressed in my last email, I was so excited to hear that my dad has gone back to 24 hours off the ventilator only a few days after the infection and has tolerated the cuff down for 24 hours and can swallow. Praise the Lord.

My concern is that if he gets reinfected which is a high likelihood as he has had two pseudomonas infections within the span of two weeks, they have decided not to reintubate saying he wouldn’t survive it. I found the consultant yesterday to express my concerns not regarding the decannulation as, yes, it’s good to remove all these tubes and lessen more areas of infection, but it is about the timing.

My dad is weak at the moment from the past two infections. He has sat in the wheelchair a few times, but his blood pressure drops and then he needs to go back into bed. His blood pressure is still a bit unstable so he’s on and off noradrenaline.”

Just for the records, noradrenaline is considered life support for low blood pressure. Patients in ICU often without noradrenaline might pass away or might sustain organ damage such as hypoxic damage to organs.

Carrying on with the email.

“My dad isn’t responding like he was before he is sleeping a lot and is awake for short periods of time, but I feel he is still trying to get over the past two infection. Looking at the list of criteria a patient needs to meet for tracheostomy decannulation, he meets all of it except he’s receiving low support for blood pressure and he’s responding on and off, but I think my dad is too weak for tracheostomy decannulation.

Now, the ICU doctor explained that this is their only window of opportunity as he will “never be as strong as he is now” as his muscles are atrophying, and he is getting weaker and weaker. This may be the only chance for them to try to remove the tracheostomy as it may be too late in the future. He said they need to do all they can to give him a chance at the future and some quality of life.

Now, only one other consultant has spoken life and about my dad’s future in a positive light, the rest have all been incredibly negative. Hence, my skepticism that this decision is for my dad’s best interest.

I would really like to know your opinion. Do you think they are making the right move right now and that is potentially the only window of opportunity as my dad is getting weaker? Or is it more that they are setting him up for failure knowing he would probably get reinfected?

Apparently, his blood cultures are negative, no bacteria in the blood stream right now. He was on a 5-day course of antibiotics, and they have removed the catheter, which is the main cause of infection for now.

Do I understand you correctly that if the doctors decide to not reintubate and the family disagrees that doctors can override that decision?

From Sonia.”

Sonia, thank you so much for detailing your dad’s situation. Now, knowing your dad’s situation very well, I strongly agree that decannulation might be the right thing to do, but they need to reinsert the tracheostomy if he’s failing, if he can’t manage without the tracheostomy. While all the signs are there, that he might be ready, if he remains weak and he remains on the noradrenaline, there’s a high chance that he might need the tracheostomy back in to maintain a stable airway.

So, what I would do in a situation like that is definitely make sure that if he does fail the decannulation, that he will have the tracheostomy reinserted so that he has another chance of life because otherwise, unfortunately, he will pass away.

As far as the overriding of decisions is concerned, there are often gray areas. I know you are in the U.K., and I know in the U.K., the doctors are always trying to override families thinking they know what’s best, trying to play God when it comes to life or death in ICU. I strongly disagree with that because I think it’s the family’s decision and the family’s decision only.

Now, I’ve been saying for many years that hospitals are very good at pretending they can do whatever they want, which is pretty much what they’re implying to you. They’re basically implying to you, “We’ll take the tracheostomy out. If he’s not ready, we won’t put it back in and then your dad is going to die.” That’s a very bleak outlook. It’s very unethical in my mind that it could also be perceived as euthanasia. Some people might even say this could be perceived as murder.

Now, also to look at some facts. Have they done an arterial blood gas? Because that will probably also give you an indication whether he’s ready for decannulation or not. Also, what is their plan if he does fail decannulation? Maybe they could put him back on BIPAP (bilevel positive airway pressure) as well.

Another very important step you haven’t really described and I’m wondering whether they’re doing that or not? Are they mobilizing him? You mentioned they put him in the wheelchair a couple of times and he’s getting sleepy, can he tolerate more mobilization? Can he tolerate physiotherapy? Have they tried a Cough Assist for example? If they are thinking of decannulated him, he probably won’t need a Cough Assist, but it’s probably still worth asking the question. Would they consider using a Cough Assist if he deteriorates once the tracheostomy is out? Would they consider BIPAP?

I agree with you that as long as he’s on noradrenaline or on and off noradrenaline, he might simply not be ready regardless of whether the cuff is down, and he’s passing swallowing assessments. I do believe the risk is too high.

Also, they should be checking a hemoglobin level because if he’s still on and off noradrenaline, you might just need a unit of blood to help him getting off the noradrenaline.

So, but I would certainly strongly advocate that your dad gets all the right care and treatment here and that you are not being overridden in your decision making. As you may know, in the U.K. in particular, some families take the NHS to court, which might be an option here for you. But it’s probably not there yet until you know what is exactly happening. So, I hope that answers your question, what to do next.

Now, I have worked in critical care for nearly 25 years in three different countries where I worked as a nurse manager for over 5 years. We’ve been consulting and advocating for families in intensive care all around the world since 2013 here at intensivecarehotline.com. We have been saving many lives with our consulting and advocacy and you can verify that on our testimonial section at intensivecarehotline.com, also on our podcast section at intensivecarehotline.com where we have done client interviews.

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, which is exactly what Sonia, and her family were dealing with in her situation.

Now, that is also one of the reasons why we have created a membership for families of critically ill patients in intensive care. You can become a member when you go to intensivecarehotline.com and you click on the membership link, or you go to intensivecaresupport.org directly. In the membership, 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 related.

In the membership, you also have exclusive access to 21 e-books and 21 videos that I have personally written and recorded, and the access to me and my team as well as the access to the e-books and the video will make sure you make informed decisions, you have peace of mind, control, power, and influence, making sure your loved one gets best care and treatment.

Also, I offer one-on-one consulting and advocacy over the phone, Skype, Zoom, WhatsApp, whichever media works best for you. I talk to you and your families directly. I handhold you through the process, making sure you manage intensive care team, so they don’t manage you. I also talk to doctors and nurses directly. I ask all the questions that you haven’t even considered asking but must be asked when you have a loved one in intensive care once again, so that you make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets best care and treatment. I hold intensive care teams accountable with my questioning, making sure they can’t hide behind the medical jargon.

The reality is when you have a loved one in intensive care, it is a once in a lifetime situation that you simply can’t afford to get wrong. If you think you can manage this by yourself, if you’re not a medical professional, you will be fighting an uphill battle. The longer you wait getting help, the more difficult it will be and not getting help will cost lives. We have seen that over and over again when families come to us when it’s too late. If families come to us when they still have time, we have turned many situations around. Like I said, have a look at our testimonial section. I also represent you in family meetings with intensive care teams.

We also do medical record reviews in real time so that you can get a second opinion in real time. We also offer our medical record reviews after intensive care if you have unanswered questions, if you need closure, or if you are suspecting medical negligence. All of that, you get at intensivecarehotline.com. Call us on one of the numbers on the top of our website or send us an email to [email protected] with your questions.

If you like my videos, subscribe to my YouTube channel for regular updates for families in intensive care, click the like button, click the notification bell, comment below, what do you want to see next, what questions and insights you have, share this video with your friends and families.

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If you want your video done very quickly, make a small donation, use the super chat button, and I will get to your video and answer your question as quickly as possible. I have a big backlog of emails sitting from October last year, we are now in June 24. So, we get so many emails and the quickest way for you to for me and for my team to help you is contacting us directly at intensivecarehotline.com or make a small donation and I will read out your email as quickly as possible and answer your questions.

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.