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 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 9)
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 10)
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 Part 1, Part 2, Part
3, Part 4, Part
5 , Part 6, PART 7, Part
8 and PART 9.
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!
If you have followed this series of questions, you would have seen that by now, Garry’s Dad’s situation was getting more and more desperate as the ICU really let them down from the
start.
By the time Garry got my help it was almost too late, because his Dad had been mistreated for too long and the ICU was reluctant to seek outside help.
This story and this series of questions really serves as a warning to anybody who has a loved one in Intensive Care and it really shows that you can’t afford of not doing your research. Not doing your own research when your loved one is
critically ill in Intensive Care could well prove deadly in fact!
If you are in doubt if your loved one is getting the best possible treatment that they could possibly have, please send us an email to support@intensivecarehotline.com or simply give us a call on one of the
numbers here
Garry writes
Hi Patrik,
thanks for your time again today over the phone.
Update: I
tried to get my Dad’s medical records after our phone call, apparently I can’t get the medical records while he’s still an inpatient. It’s just one uphill battle after another.
I’m going to try and talk to the medical director of the hospital.
Still can’t make contact with his cardiologist, they’re all hiding!
I’ve attached a photo of his
monitors in ICU, sorry about the awkward angle but I didn’t want to make it obvious that I was taking it. Not that it will tell you much.
At least his infection markers are down again today, and his LFT(=Liver function) and Kidney function tests show slight improvement, though still high. He’s on ZERO sedation. He is on 2mg of morphine. He’s on 16mg of Noradrenaline. He is still on strong antibiotics for the sepsis.
They are offering little hope but seem to be treating him medically. The DNR (Do not resuscitate order) is still on his file.
That’s all for now
Garry
Hi Garry,
I can see in the picture that all his vital signs are stable- that is good. Keep in mind though that this is on high doses of inotropes such as the
Noradrenaline.
Whatever happens at the moment in terms of how they have treated your Dad and you in the process, you have only little control over, how you react you have 100% control.
I do really believe that they have let you and your Dad down from the start by not doing all the right things to begin with!
They haven’t done the tracheostomy early on and they haven’t referred him to a proper ICU who has all the equipment, skills, “know-how” and right attitude that would have maximized chances for your Dad’s survival.
Stay strong and positive. This experience will make you a better and stronger
person.
I think you’re doing remarkably well given this extraordinary challenge the universe is putting you through here. So therefore give yourself a pat on your back, Garry!
Not many people would be as level headed as you are. Of course they are trying to slam all doors because they realize you are not taking “no” for an answer and you are quite persistent, so well
done!
You are your Dad’s best advocate!
Again, I doubt that you can’t access your Dad’s medical records while he’s still an in-patient. Doesn’t make sense to me and other clients of ours have requested medical records during their loved ones stay in Intensive Care.
All other clients that we work with can get access to the medical notes at
any given time. Of course the Hospital might say that they won’t give you access, but it’s usually just an obstacle they want to put in front of you to make your life even more difficult that’s all.
Recommended and related:
Usually, if you put things in writing that you want access to the medical records- and more importantly- put it in writing with a deadline, I.e. that you want the medical records by “tomorrow 3pm”, it usually speeds up the process as they know you’re serious and they know that they can’t deny you the request.
So again Garry, do not take “no” for an
answer!
You can get access to the medical records under the “freedom of information act”. There is plenty of information online that confirms that you as your Dad’s medical power of attorney and Next of kin(NOK) can get access to the medical records at any given time. From my perspective they are just making it more and more difficult for you… what a nightmare!
It’s also a sign that they
have things to hide Garry and again, besides not referring your Dad to another ICU, given that they haven’t done a tracheostomy for nearly 5 weeks shines another very negative light on things!
Contacting the medical director is definitely something you should be doing, but I also believe you should be trying those Patient advocacy groups here
https://www.medicalcouncil.ie/Links/Patient-Advocacy-Services/
http://www.patientfocus.ie/site/index.php
I can only imagine how frustrated and disappointed you must be by this whole experience and I believe that you still shouldn’t give up. Whilst things look pretty grim from a medical point of view, I believe you owe it to yourself and your Dad to get to the bottom of things.
The more I think about it, I still strongly believe
they have no or little insights into treating Cardiomyopathy with ECMO/VAD/Heart transplant and I believe they simply don’t know what they don’t know.
I’m also certain that by now the Medical Director of the Hospital as well as the Cardiologist know that you want and demand answers and they’ll be on high alert! Therefore I wouldn’t expect too
much, but you should still try.
Medically yes things look grim 16 mcg/hour of Noradrenaline is a substantial dose and as long as it doesn’t go above 30mcg/hour there is still hope.
It’s clear to me that they are not prepared to look after the most sickest Patients given that they can’t or don’t want to offer Dialysis.
Therefore, it shows lack of skills and experience. Back to square one, which is why your Dad should have been referred on to another ICU early on…
They will need to continue treating him medically until the end or until he might get better, even though his chances for improvement by
now appear to be diminished. That’s what they owe you and your Dad at the bare minimum.
Just make sure your Dad is not suffering and as long as he’s comfortable with 2mg/hour Morphine that’s all he needs.
I would still challenge the DNR (Do not resuscitate) order. It simply goes like this.
Intensive Care Units think that they can play “God” and decide who’s going to live and who’s going to die.
One way to put their authority on this is to issue a DNR (Do not resuscitate) or NFR (Not for resuscitation) order on file.
We have discussed how you can go about getting them to take it away, because they are breaching their own hospital/ICU policy by not getting your consent. They haven’t even counselled you on it.
If your Dad’s heart was to stop and they are not going to resuscitate him, from my
perspective that’s called murder, especially since you haven’t agreed to the DNR order.
It’s also often against the law and quite simply illegal what they are doing there.
Again Garry, please put things in writing to the hospital so that they can’t ignore your pleas.
Recommended:
I’m very happy to review some of your Dad’s medical notes once you have access to them.
Any questions, please let me know. My phone is always on!
Keep up your spirits!
