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
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 9)
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.
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!
I just got off the phone with ICU. The consultant has gone with a patient to another hospital so he’s not available to speak with me right now. I spoke with the nurse, and lack of communication once again.
I was told that a medical decision this morning was that my Dad will not be resuscitated if he goes in the cardiac arrest. Apparently I have no say.
Things are not looking good. I spent the last few days up and down to the hospital to speak with consultants etc.
My Dad is in a very very poor condition. Perhaps I underestimated how sick he was, I don’t know. As he looked to be ok at “face-value” as in, he was conscious and looked to be improving.
They will not remove the DNR (=Do not resuscitate) status from his file, apparently it’s a medical decision and the family cannot overrule it.
As of this morning, I have just been told that his condition is grave, and that he most likely has 7-10 Days left to live. I simply cannot believe it, and feel totally overwhelmed with emotions.
I attempted to the best of my ability to ask the questions we spoke about the other day, to which I got vague answers or I was re-directed by other information, if you know what I mean.
His lungs are incredibly stiff and difficult to ventilate, he has another bad infection in his lungs (Sepsis?) – he is on 80% Oxygen and the vent is set to 28BPM (i think that’s right?) – his heart is really weak (cardiomyopathy) his blood pressure is really low.
He is on Dobutamine 16mcg per kilo per minute ( I think that’s right ) – they said that’s the double dose? – he has never been off this, apart from a short “break” a few weeks ago. He is on strong antibiotics for the infection again. His ejection fraction(=contractility of the heart) is poor. His kidneys, while still functioning, are getting weaker. His liver is also affected and showing early signs of failure.
They repeatedly told me that there is nothing more that they can do for him. They are still treating him but wont do anything “new”. I mentioned all of the things that we spoke about (ECMO, VAD, Dialysis) but they said he is too weak for that and he wouldn’t be a candidate for it.
I asked them several times “is my Dad in the best facility?” and “can I move him somewhere else?” to which they responded with “if he wasn’t in this ICU, he probably would have died weeks ago, and he would not have had a Tracheostomy done”.
I am absolutely shell-shocked and don’t know how to comprehend what I have just been told. I have tried a few times now to state my authority, but they keep shooting me down.
I wonder can I request his medical records and charts? – maybe if I can get an independent second opinion…
AGGGHH 🙁 🙁
Here is my response which is basically a summary of a phone conversation that took place after Garry’s email.
I’m very sorry to hear what you and your Dad continue to go through!
The news you are getting from the ICU unfortunately are not getting any better and I believe this is all a result of their poor approach and lack of planning to your Dad’s treatment right from the start.
You and your family are fighting a very lonely battle with the ICU misleading you one day after another.
First off Garry, the ICU can’t just issue a DNR (Do not resuscitate) order without getting your consent AFTER they have consulted you and given you time to think.
They have never been honest or proactive in their efforts to save your Dad’s life!
It’s all BS Garry!
Of course you will have a say. They can’t just say or decide that without consulting or consenting you. It also sounds to me like the Cardiomyopathy is the problem and not the sepsis. A Cardiomyopathy also makes it more likely that your Dad might go into Cardiac arrest.
They are at their wits end without having tried all the right treatments in the first place. They should have referred him to a proper ICU so that the Cardiomyopathy could have been treated properly.
I think it’s very hypocritical of them to say that if he wasn’t in this ICU that your Dad would have already died. That’s a whole lot of BS. Any other ICU would have at least informed you about other options such as ECMO, VAD and/or heart transplant and he would have had the opportunity to get these advanced treatment options in another ICU.
To get a handle on the things that are currently happening Garry, you need to ask them for their hospital/ ICU policy regarding NFR (Not for resuscitation) or DNR (Do not resuscitate) orders. Also ask them for their “withdrawal of treatment” policy. It’s often against their hospital/ICU policy and against the law if they make Patients NFR/DNR without family consent.
- 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!
You might also want to look into these areas of Patient advocacy
If you Google “patient advocacy Ireland” you get more results.
Get the consultant on the phone and get him to talk to you first.
Given that he’s not even in the hospital and has left with another Patient speaks volumes about how serious he takes his duty of care in his 3-bed ICU where he doesn’t know how to treat Patients with Cardiomyopathy properly. And even worse if he doesn’t seek outside help to get your Dad in the best possible facility.
He doesn’t want to talk to you, because he knows that you want answers to your questions!
Nevertheless, don’t give up and stay positive!
You should also be able to request his medical notes as you are your Dad’s next of kin and you have medical power of attorney. You usually get access to the medical records under the “freedom of information act”.
As far as I can see your Dad is not and has never been in the best facility and I have stated my reasons why.
Your Dad is way too young to be given up on and of course they keep shooting you down because it would be extremely embarrassing for them to refer him to another ICU given that it took them 4 weeks to do a tracheostomy. Any other ICU would look at your Dad’s case in disgust and would wonder why they didn’t refer him in the first place.
ECMO, VAD etc… is something that is most effective when Cardiomyopathy is first diagnosed. The combination of Sepsis and Cardiomyopathy is not a good one, however if the IV Antibiotics work he might have a chance.
Given that you are saying that your Dad has never been off the Dobutamine is a clear sign to me that he’s got chronic Cardiomyopathy and therefore ECMO/VAD and potential heart transplant would have been the only option!!!
By not telling you about those options in the first place they have not acted in your Dad’s best interest and from my perspective and it’s negligent!!!
I’m not surprised that he’s now on double strength of Dobutamine, because his heart keeps deteriorating and weakening.
It’s also not overly surprising that they are now talking about the liver being affected as well. Poor cardiac/heart function often leads to reduced blood flow in the liver and therefore the liver may “shut down”. Also, many weeks of heavy sedation with Midazolam as well as Morphine or Fentanyl and with those drugs being metabolized in the liver may have impacted negatively on the liver as well.
Furthermore, 80% of Oxygen is a concern of course- keep in mind the air we are breathing on room air is 21%- and the ongoing deterioration and “stiffness” of the lungs is most likely a by-product of the Pneumonia and ongoing congestion of the heart with the Cardiomyopathy. The ongoing congestion will push fluids back into the lungs causing “stiffness” and reduced functionality. The ongoing Pneumonia is another concern of course.
I’m also not surprised that his kidneys are getting weaker too. Many critically ill Patients in Intensive Care eventually go into kidney failure and need intermittent haemodialysis.
- Why your critically ill loved one might need Dialysis(Kidney machine) or Haemofiltration for Kidney Failure(Renal Failure) and is having a Dialysis machine attached to them!
I strongly argue that your Dad would have had a fair chance for recovery/ adequate therapy in another ICU and they are playing on your inexperience by trying to distract you from the real issues. But I also believe that they are inexperienced too.
I don’t believe that they value your Dad’s life nor do they respect your wishes and I think it’s disgraceful.
Again Garry, I would be very happy to talk to them over the phone/ Skype, however I also understand that they are very reluctant to look outside of their three bed ICU. All I can say again is that it’s disgraceful and embarrassing in how they are and have handled your Dad’s case. It’s negligent!
Let me know what you want to do.
You may also want to contact
Wishing you and your family all the very best!
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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!