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 our readers and the question was
The ICU Team is Thinking Negative About my Dad’s Condition. How Do We Deal with it?
You can check out last week’s question by clicking on the link here.
In this episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Anna as part of my 1:1 consulting and advocacy service! Anna’s
dad is in ICU and the ICU team won’t give her copy of her dad’s CT brain scan. Anna is asking if she should challenge the ICU team and push for what she wants.
The ICU Team Won’t Give Me a Copy of My Dad’s CT Brain Scan Report. Should I Challenge the ICU Team and Push for What I Want?
Hello Anna,
Thanks for the update.
RECOMMENDED:
A couple of things.
It’s great that you keep pointing out what your Dad wants. Please have a listen to this interview here:
INTERVIEW WITH CHARLIE ATKINSON WHO WAS A PATIENT IN ICU& LTAC FOR MORE THAN 12 MONTHS AND SURVIVED AGAINST THE ODDS! LISTEN TO CHARLIE’S INSPIRATIONAL STORY!
In order to give you more perspective, you also may be interested in services like INTENSIVE CARE AT HOME. Those services are not operational in the UK (yet), but have been operational for many years now in other countries and are a genuine alternative to a long-term stay in ICU.
Ignore the “doom and gloom” for now. Intensive Care professionals are the experts when it comes to Intensive Care, not when it comes to life after Intensive Care.
Stay positive no matter the outcome. Easier said than done I know. Here are some tips for you:
Let me know when you want to talk. You can always book the hour here, but I can be flexible around timing, just let me know.
Kind regards,
Patrik
Hi Patrik,
That’s very helpful thank you!
Unfortunately we’ve been told they won’t give us a copy of the CT brain scan due to patient confidentiality and that there isn’t a consolidated report that they can provide anyway?
Does this make sense to you?
I do want to go ahead and book our chat but if you think I should challenge it, I’d be very grateful for guidance/advice.
Best wishes,
Anna
RECOMMENDED:
Hi Anna,
Whoever is the medical power of attorney or next of kin for your dad has every right to get access to the report under freedom of information.
You could also get consent from your Dad himself to get the report. It sounds like your Dad might be in a position to authorize this by now.
This is a whole lot of crap they are telling you and are just delay tactics.
You also need to ask them what they have to hide?
As I might have mentioned to you, if you don’t succeed at first, keep trying. Those are just delay tactics and they can’t stop you from accessing the report.
You might have to change tact slightly and get a bit more forceful, I have never worked with a family who can’t get access to the medical records.
Whatever they tell you is crap just keep requesting with a deadline.
Looking forward to talk to you!
Kind regards,
Patrik
Hi Patrik,
Many thanks for your email; that’s very helpful. I will ask my Stepmom if she can request it when she visits – she is the recorded next of kin for my Dad.
They are saying Dad doesn’t respond to commands and that his limbs moving are just reflexes. Dad doesn’t really respond much at all to the medics/nursing staff and if he does, not consistently; his biggest response is to his family.
He will appear to kind of follow a conversation, do a silent laugh, or smile, or nod to a simple question. Is comfortable? But that’s the extent of it. He doesn’t seem able to focus his eyes at all. The consultant says he looks vacant, not cognitive.
He said those responses our family observe are very basic and should have progressed to more by now.
I have asked to have a discussion with a consultant neurologist myself, since they are not planning to bring a neurologist in to assess Dad, despite our requests. They agreed to arrange it for me for later in the week.
We feel it’s incumbent upon the ICU to demonstrate to us beyond reasonable doubt that Dad is brain damaged and that his prospect of neurological recovery is minimal. Otherwise we feel they are asking us to support withdrawing life on uncertain grounds.
Would it be possible to speak tomorrow (Monday) at 10am UK time? Or thereabouts? My brother would be able to listen to the conversation too and contribute.
Obviously I quite understand if this isn’t possible!
Best wishes,
Anna
Hi Anna,
Tomorrow 10am UK time tomorrow will be fine. That’s 7pm my time and it’s perfect.
Please also find out what medications he’s on. There may be some medications in the mix keeping him drowsy. Just like with the CT scan, get all the information. You want substantiated information.
Don’t give them any reason to not back up what they say beyond the shadow of a doubt.
I would go as far that you or your step Mom should get all the medical records.
Again, that’s no problem and you are entitled to it. I have never worked with a client who couldn’t get access to the medical records.
I will give you a call at 10am UK time tomorrow morning.
Kind Regards,
Patrik
RECOMMENDED:
Hi Patrik,
Many thanks for your email!
I’m hoping my brother was able to get a picture of the ventilator settings and to ask what medications Dad is on. I will forward to you asap.
My Stepmom reported yesterday that as she arrived, his nurse said “Your husband is doing better neurologically today”.
He was sitting in the chair and my Stepmom and her sister spent a few hours with him. They felt he was interacting – laughing, smiling, nodding etc.
On Saturday as you know I asked the consultant again for an assessment by a neurologist. When he effectively declined, I said “Ok, could I meet with a neurologist myself then? As I have lots of questions and I’d really appreciate getting an understanding of Dad’s condition for my own benefit”. He agreed. I gave my availability for the end of this week.
Yesterday a Matron greeted my Stepmom on arrival; “It was thought it would be helpful to assign me to your husband’s case, to be here for you as a family and put forward/answer any questions you have.” She took the trouble to assure my Stepmom there was no question of needing Dad’s bed – “we had one patient in ICU for a year” she told my Stepmom as they chatted. What an interesting development Patrik.
It was also passed on to me via my Stepmom that the consultant neurologist was available to meet me on Friday but that guess what, he will come and see Dad to review him.
I suspect they won’t let us meet with him alone now; they will include an ICU consultant to give “their” perspective. It’s gone from me requesting a one on one meeting to a neurological assessment. But that’s good – the outcome we wanted.
I will be clear about dad’s wishes as we discussed. I will also be clear that we had always wanted and asked for a neurological assessment to be part of his diagnosis and treatment plan from the beginning. And that our position remains the same.
The fact that this meeting is happening in week 7 will tell the neurologist what he needs to know.
I am hoping he can talk us through the CT brain scan report too.
I’ll get the meds and ventilator stats to you asap!
I suppose we will have to wait and see what the neurologist tells us and go from there.
Best wishes,
Anna
Hello Anna,
That’s great news Anna, well done!
They know you won’t be giving up, nor will you take “no” for an answer!
Keep pushing for what you want, I’m looking forward to hear from your brother!
Kind regards,
Patrik
Hi Patrik,
My brother took the photos today but apologized for the blurry focus – he took it quickly and then later realized it could have been much clearer. Apologies.
It said PEEP on one of the monitors?
I’ve not seen his saturation levels at 88 for a while, apparently that was when they first put him in the chair, then it went back up …..they are usually 92-95, on occasion higher. I’ve seen them at 96/97. When he coughs and they suction it goes up to 100 momentarily.
They managed 25 minutes off the ventilator today.
They put the television on for Dad; he enjoyed watching the World Cup. My brother and Stepmom said dad was able to squeeze their hand on request today, and nodded/shook head to questions
I will chase up what medications he’s on.
Do let me know if the images no good and I’ll take some myself when I travel to there on Thursday.
Best wishes,
Anna
Hello Anna,
Thanks Anna.
I can actually see the pictures below, I didn’t realize the pictures were in the email.
Here is the following regarding ventilation.
Your Dad is in a spontaneous ventilation mode CPAP/PSV. This means he is breathing spontaneously where he has to trigger every single breath and gets support from the ventilator. That means he’s in a ventilation mode where he is very close to be coming off the ventilator. My concern is that he’s still on 35% oxygen, ideally it should be 30% or less.
Furthermore his breathing rate is too fast at 47 breaths per minute. It should be less than 30 breaths per min. His breathing volumes look adequate and his oxygenation on the monitor is 88% and it should be 92%. You should be asking for his arterial blood gas results, his CO2 levels
in particular with COPD.
So overall, your Dad might be close to be coming off the ventilator, which is great news.
Please let me know of any medications he’s on so I can comment.
Kind regards,
Patrik
Hi Patrik,
Thanks so much Patrik!
Our plan is to purchase another hour talk with you once we’ve had the meeting with the neurologist.
Dad seems to be doing better neurologically.
They are now talking about doing surgery to fit Dad’s pacemaker internally.
Would it be ok if I ask a few questions Re: your comments below on the ventilator?
“My concern is that he’s still on 35% oxygen, ideally it should be 30% or less.
Furthermore his breathing rate is too fast at 47 breaths per minute. It should be less than 30 breaths per min.”
Sorry Patrik, do you mean they should be adjusting the settings? Or is your concern that Dad is struggling with oxygen and breathing? Apologies if I’m not understanding you correctly.
“His breathing volumes look adequate and his oxygenation on the monitor is 88% and it should be 92%.
You should be asking for his arterial blood gas results, his CO2 levels in particular with COPD.”
Ok I will ask for the blood gas results – thank you. I think I mentioned when my brother took this snapshot they had just moved him into the chair and adjusted his settings. Then his saturation levels went back up to 92.
Many thanks as always!
Best wishes,
Anna
Kind regards,
Patrik
