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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 from one of our readers and the question last week was
My 57 year old Dad has been in Intensive Care with Cardiomyopathy and Pneumonia for 5 weeks! He’s still in an induced coma and still doesn’t have a tracheostomy, HELP! (PART 3)
You can check out the answer to last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to answer another question from one of our readers and the question this week is
My 57 year old Dad has been in Intensive Care with Cardiomyopathy and Pneumonia for 5 weeks! He’s still in an induced coma and still doesn’t have a tracheostomy, HELP! (PART 4)
This series of questions from Garry are excerpts from numerous 1:1 phone and email counselling and consulting sessions with me over a two month period.
Previous questions from Garry you can access here Garry Part 1 and Garry Part 2
Garry and his family went through many challenges while his Dad was in Intensive Care and I felt very privileged helping Garry through this difficult time in his and his Dad’s life!
it will give me some more time to try and figure more things out, I am going to attempt to obtain my Dad’s medical records under the Freedom of Information law in xxxxxxxxx. That way I can get an independent second opinion, what do you think? – Maybe I can give you some of his records if/when I get them so you can maybe help me understand them.
I feel like a tiny drop in the massive ocean with these consultants and doctors, it was truly a difficult experience on Tuesday, I felt so intimidated. Every time I mentioned things like ECMO, VAD and Dialysis they kept shooting me down saying he is too weak and that he isn’t a candidate.
Playing “devils-Advocate” for a second on myself. Do you think they might be right? – in your own past experience, when treating patients, how do you know when the time has come to withdraw care? Would there ever have been such a time that treatment like VAD and ECMO would not have been possible?
I wonder if I gave you the contact details of the senior consultant, Dr. xxxxxxxxxx, do you think you might be able to make contact with him? – I have a feeling if I mentioned that I wanted you to talk to him he might avoid it, this is his online profile here xxxxxxxxxxxxxxxx
talk again tomorrow
thank you for the update Garry!
Yes, your Dad is probably not in the best condition now to become a candidate for ECMO, VAD and/or heart transplant because 70 days of ICU have taken its toll. It doesn’t make it impossible but extremely difficult and challenging.
The best time to put somebody on ECMO and then LVAD is early on in their ICU admission when medications such as Inotropes don’t work. From that perspective he might not be a candidate now given that they’ve stuffed up, I agree with that.
Your Dad most likely is too weak now to go on ECMO/LVAD. He would not be too weak to go on Dialysis if he needed to.
Many Patients in Intensive Care are receiving Dialysis for kidney failure and they do so regularly and often.
There are very few contraindications for Dialysis, therefore- they are again- playing with your inexperience in this area, telling you that Dialysis is not option and it’s simply not true!
They have been stuffing up from day one and now they are telling you that your Dad is too weak to have certain treatments and therapies.
I do agree with this, however if they had done the right things in the early stages after your Dad’s ICU admission by referring him to a specialist ICU, he could have had all the proper assessments and potential treatment options such as ECMO/VAD and/or heart transplant available to him.
Again Garry, 70 days in ICU make advanced treatment options such as ECMO/VAD and/or heart transplant so much more difficult because of your Dad’s unnecessary prolonged stay in an Induced coma that has severely weakened him.
Once again, your Dad should have been referred to a specialist ICU early on, they would have had the resources and the experience to give your Dad the best chances of advanced treatment and therapy, including a timely tracheostomy.
A timely tracheostomy would have reduced the need for your Dad to stay in an induced coma and it would have reduced the need for prolonged sedation, increasing chances for your Dad to go on ECMO and/or VAD.
If your Dad was suffering a lot and now that he’s back in an induced coma he may not be suffering for now. Given that you were telling me that he was in good spirits last weekend… I have seen Patients getting better and then develop Sepsis or have the heart becoming weaker again with Cardiomyopathy.
If that happens they usually get a shot of Levosimendan (Simdax) which is a special and also expensive inotrope when Dobutamine isn’t working and/or ECMO/LVAD/ heart transplant is unavailable and/or not an option.
Especially since you’ve mentioned that he’s on double strength Dobutamine, the Levosimendan (Simdax) might be the next step and it might buy your Dad some time. It wouldn’t surprise me if they have never used it there.
I also need to make a distinction here. You are asking about when should care be withdrawn? Nobody should ever “withdraw care”. They may suggest “withdrawing treatment” or suggest to “withdraw life support”, but nobody must ever suggest “withdrawing care”. I hope that makes sense. Your Dad might be in a “withdrawal of treatment” or “withdrawal of life support” situation but never should care be withdrawn… Huge difference!
THE 5 THINGS YOU NEED TO KNOW IF THE MEDICAL TEAM IN INTENSIVE CARE WANTS TO “LIMIT TREATMENT”, WANTS TO “WITHDRAW TREATMENT”, “WITHDRAW LIFE SUPPORT” OR WANTS TO ISSUE A “DNR” (DO NOT RESUSCITATE) OR “NFR” (NOT FOR RESUSCITATION) ORDER FOR YOUR CRITICALLY ILL LOVED ONE!
When is the best time to withdraw treatment from my experience?
Yes, treatment might be withdrawn if all parties are in agreement. Even if treatment is being withdrawn, care should never been withdrawn.
There is a big difference between “withdrawing care” and “withdrawing treatment”. One can and should still care even when treatment is being withdrawn.
I hope that makes sense as I think this really needed an explanation!
If your Dad was 87 years of age and was suffering and you were content that they’d given it their best shot, then the time might be right. Withdrawal of treatment has its time and its place irrespective of age in some situations.
You may also want to think about if your Dad is in a “real” or in a “perceived” end of life situation and you can find out the difference here
- The Difference Between “Real” And “Perceived” End Of Life Situations When Your Loved One Is Critically Ill In Intensive Care!
Yes, I fully understand that you might have been intimidated by the consultants and that’s why I keep referring to their “perceived power” and their “perceived authority”. It’s only perceived and not real. Always keep that mind. I think you’re doing great, because they are now realizing that you understand more than they would like you to.
Definitely get a second opinion as well.
It doesn’t look good from what you are telling me, but let’s try and get him through the weekend and see what happens. As long as your Dad is not suffering I think they should continue. Whatever happens happens but you need to make sure they are doing the right things.
I’m glad you’re sending the doctor’s profile through.
According to his profile he has no qualifications that from my perspective enable him to work in ICU. Nor does his CV state he has spent considerable time in ICU.
That’s why he’s “running” a 3- bed ICU…
On top of that where is the Cardiologist? You haven’t mentioned anything about a Cardiologist being involved in your Dad’s care!
That’s not a good sign and in cases of severe Cardiomyopathy in Intensive Care, a Cardiologist should be involved at all times!
Given that this hasn’t happened, again it screams negligence to me!
They are out pf their depth and your Dad is not getting the best treatment that would have been available to him, had he been referred to a specialist ICU early on!
I also think it’s a very good idea if you can get your Dad’s medical records to get to the bottom of things!
We can certainly help you review those medical records, make sense out of them and find out where they’ve dropped the ball so to speak!
Happy to talk tomorrow at 12pm your time!
Wishing you and your Dad 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
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- 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
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- 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!