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 in this series of questions from our client Sue and the question last week was PART 1 of
You can check out last week’s episode by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to answer another question from one of my clients Sue, which are excerpts from phone and email counselling and consulting sessions with me and the question this week is
My Dad has end-stage HIV and is on ECMO in Intensive Care! Can he have a lung transplant? (PART 2)
Sue continues to describe her and her Dad’s situation as follows
the doctors did request we attend as a family to a meeting tomorrow at 3pm. We didn’t have a meeting in the end today, as the nurse could not give me a defined time and said they are very busy and cannot guarantee they could come to the meeting in case something comes up. I visited my father yesterday and they had continued trying to wean him off ECMO but he is back on both sedatives as he was not coping well with breathing when they tried to wean ECMO off.
To me he looks very drawn in, especially around his eyes. He has been in ICU on ECMO for 3.5 weeks now and other than continuing to try to wean him not sure what the next step is. He doesn’t seem to be able to breathe independently without at least 35-40% oxygen and they have increased the oxygen pressure.
They are cleaning him well and washing his mouth being in a bed since 7th march where he only came off to walk to the bathroom a handful of times prior to going onto the ECMO is a concern for me. In addition being under an induced coma for 4 weeks is also a long time no?
The nurse yesterday mentioned the doctors can see us as a family if we still want to. (It’s possible my sister and I were trying to arrange a meeting at the same time).
They said he has been stable with the treatment he has been on which has been going on a while now and want to see what else they may do to progress things with my dad.
Are there any key things I should bare in mind. I want to be prepared. I have read your article and know the importance of bargaining. Just not aware of what his options may be, not less they state them. But what if they don’t?
Appreciate any advice you can give.
As I have mentioned in our phone call yesterday, given that they want to meet tomorrow you may get prepared for
- The Intensive Care team wanting to talk about a “withdrawal of treatment” or a “withdrawal of life support” for your Dad if he’s not improving
- You may not want to attend the meeting in the first place if you think you and your family will experience unwanted pressure to agree to a “withdrawal of treatment”, especially if you are not ready for it
Your Dad is in a difficult situation there is no doubt about it, after 3.5 weeks on ECMO and being unable to come off it.
Nevertheless, on the one hand I’m glad to hear that your Dad is getting good nursing care with regular washes and mouthcare, it’s just as important as good medical care.
Now given that they are unable to wean your Dad off ECMO, by the sounds of things and given that your Dad has been in ICU now for such a long time, the next steps might be the Intensive Care team wanting to start discussions around “withdrawing treatment” and withdrawing ECMO in particular.
Again, you may want to have a look at the following articles and videos here to get more information on the subject matter
As we discussed yesterday, ECMO can be used for a bridge to a lung transplant, however given that your Dad is not even on a transplant list, I do unfortunately think that if they can’t wean the ECMO that he will be approaching his end of life.
Your Dad’s lungs have not been recovering.
With the underlying and chronic HIV issue that’s probably been diagnosed too late, the odds are not in your Dad’s favour at this stage.
Again, the combination of HIV, Pneumonia and the VV-ECMO for over 3.5 weeks make it unlikely your Dad getting a lung transplant or even being considered for such.
At this point in time, there is a very good chance that if ECMO is being removed, your Dad will pass away very quickly, I have seen this on a number of occasions in clinical practice that if ECMO can’t be weaned and is being removed that death is inevitable.
Therefore it is important your Dad’s suffering will be minimized by the time life support is being removed.
Now, if you have followed my blog for any length of time, you would know that I’m the first one to say that staying positive, trying to negotiate with the Intensive Care team and trying to buy more time is the way forward.
Especially since you have told me yesterday that he’s on multiple inotropes/vasopressors and also still on strong sedation like Midazolam and Fentanyl it’s an indicator that your Dad is not doing great.
What should have happened earlier in his admission is to do a tracheostomy and for whatever reason it never happened.
That’s why I always say that families in Intensive Care need to look for advice early on so that they are informed about treatment options.
Intensive Care teams are not always open and transparent in relation to treatment options, it sounds to me like you only found out about the tracheostomy as well as the potential for a lung transplant in recent days.
It doesn’t sound to me like you and your family have been informed from the start about a tracheostomy often reducing the need for sedation and therefore increasing the chances of recovery.
It also doesn’t sound to me like you have been informed about ECMO sometimes being used as a bridge to a lung transplant if ECMO can’t be weaned.
Reducing sedation also often reduces the need for inotropes/vasopressors, which is another major form of life support.
- YOU DON’T KNOW WHAT YOU DON’T KNOW WHEN YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE! (PART 1)
Also, with ECMO unable of being weaned at this stage, the ventilator can’t be weaned either.
Furthermore, you mentioned that your Dad is on 35-40% of oxygen on the ventilator. You have to keep in mind though, that he would have been on 100% of oxygen via the ECMO most likely, therefore your Dad would have been on 100% of oxygen all the time.
This is important to know and understand, so that you can see the significance of his critical illness. That’s why they can’t wean off ECMO, they probably can’t reduce the oxygen as well as the blood flow.
The normal steps when weaning VV-ECMO for lung failure is to wean ECMO and then wean the ventilation.
In very rare situations Patients can be on ECMO awake and off the ventilator, but this is very rare.
In your Dad’s situation, unfortunately he never regained consciousness and has stayed in the induced coma because of the breathing tube as well as his critical situation.
Furthermore, you are asking if four weeks in an induced coma is a long time and yes it is a long time and the more time spent in an induced coma can be minimized the better.
Generally speaking, you could keep a critically ill Patient in an induced coma for a very long time.
There is significant deconditioning occurring during an induced coma and therefore the longer time spent in an induced coma, the longer the recovery time, generally speaking.
Again, an early tracheostomy could have reduced/minimized the need for sedation and the induced coma and therefore it might have improved the chances of recovery.
Normally a tracheostomy should be done about the 14 day mark of ventilation with a breathing tube and it hasn’t happened and it hasn’t even been brought up with you as an option, which I think is very disappointing.
Those are also major forms of life support and without it your Dad couldn’t survive at this stage.
Therefore, stable with treatment means that the current forms of life support are keeping your Dad and he’s stable on life support.
In terms of the upcoming meeting you’ll have with the Intensive Care team regarding your Dad’s situation, I would suggest to be prepared as much as you can.
We should be getting on the phone before the meeting so you know what to expect.
Also, have a look at this article/video here
I can dial into the family meeting as well of course if you want me to.
Again Sue, 3.5 weeks ICU and ECMO and unable to come off it with the underlying HIV is not a good starting point and I really do believe that you and your family have to brace yourself for your Dad approaching his end of life in the next few days.
At this stage I do believe your Dad is in a “real” and not “perceived” end of life situation and I do think that anything that could have improved his situation should have been done in the beginning such as tracheostomy and/or the option of a lung transplant.
I think the next best step is to get on the phone again tomorrow and talk about the upcoming family meeting!
Wishing you and your family all the best!
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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- 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
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- 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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