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)

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 frequently asked question from our readers and the question last week was

How long should one wait before stopping life support in Intensive Care on a critically ill Patient?

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 3)

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!

Garry writes

Hi Patrik,

thanks for your time again today Patrik and thanks for summarizing your answers to my questions!

I really do appreciate all your help.

Here is the “hospital’s” website that he is in (just if you where interested): xxxxxxx

They have a 3 bed ICU with one “procedure” room.

This is the “rate my hospital website” in xxxxxx, for xxxxxx hospital, the rating is extremely worrying! http://www.ratemyhospital.xxxxxxxx

What’s next on my “to do” and “to find out list” is what other treatment options there are for the Cardiomyopathy and I hope we can discuss this on our next call in detail.

As you’ve correctly pointed out, they are not equipped nor do they have the experience to help my Dad get any better.

Let me know what other options there are so I can present it to them and we can discuss on our next call!

Regards

Garry

Hi Garry,

the rating of the hospital is absolutely shocking. Just confirms everything that I have been observing and thinking thus far…

It’s good that in this day and age at least the Internet can give people a platform to voice their concerns and frustrations and keep the general public informed!

The other thing that is worrying to me is the visiting times in the ICU are something ridiculous from 2.00 p.m. to 4.00 p.m. and 6.30 p.m. to 8.30 p.m.

That’s really old fashioned and it’s highly inappropriate in this day and age. Every ICU needs to be transparent and shouldn’t restrict visiting hours. You always need to ask yourself if they have anything to hide, especially with such limiting visiting hours.

I have written an article/ video about this

WHAT ARE NORMAL VISITING HOURS IN INTENSIVE CARE?

One thing you might want to look into though is that the hospital does have a social work service and I believe you should try and contact them. Here is the link to it.

http://www.xxxxxxxxxxx

I’ve done a quick Google search, I think the xxxxxx ICU in xxxxxx looks good in terms of their service offering

http://www.xxxxxxx/services/depts/i/icu/

You’ve got to get your Dad of this ICU, they are going to kill him!

Next, as we briefly discussed in our last phone call, now that the tracheostomy has been done, now is the time to look at what else needs to be done in order to get your Dad out of this terrible state of affairs.

1:1 counselling and consulting with Patrik

Having said that though, a more optimized sequence of events and treatments should have been

After your Dad was diagnosed with the Cardiomyopathy he should have been referred on to a Cardiologist and the Cardiologist in cooperation with the ICU doctors should have investigated if he was suited to be referred and then transferred to another ICU where they have more advanced treatment options such as ECMO and/or VAD with then also having the option for a heart transplant if necessary

Given that your Dad has now been in a prolonged induced coma for now over 5 weeks they have missed making this referral early on in his critical illness and again it screams negligence to me, not even looking into all of the options available outside of their 3- bed ICU

5 weeks in an induced coma are taking its toll and early interventions such as an early tracheostomy, getting him out of the induced coma would have improved your Dad’s chances for recovery and it would have also strengthened his chances to be transferred to a more experienced and better equipped and more resourced Intensive Care Unit

Related article/video:

HOW LONG CAN YOU KEEP A CRITICALLY ILL PATIENT IN INTENSIVE CARE IN AN INDUCED COMA?

What do I mean by that?

Early tracheostomy with a worsening Cardiomyopathy and the Pneumonia would have reduced the amount of sedation and opiates(=pain killers) your Dad needed and he would have been in a much better position to “wake up” after the induced coma

With your Dad being out of the induced coma and with a tracheostomy, the focus could have shifted early on to treat the Cardiomyopathy and the Pneumonia properly – The Pneumonia was most likely caused by the Cardiomyopathy

So far the focus has been on micro-managing everything that’s going on to the detriment of your Dad. For example, the pro-longed induced coma and the unmanaged Cardiomyopathy is now leading to secondary issues such as liver failure and kidney failure. Therefore your Dad is not far away from going into multi-organ failure

Also, with an early tracheostomy and therefore reducing sedation and opiates(=pain killers), Inotropes could have potentially been reduced as well, as opiates and sedatives make the use of Inotropes all the more likely

With the Cardiomyopathy being diagnosed relatively early on and then with your Dad needing high doses of Inotropes such as Dobutamine and Noradrenaline he should have been referred to a bigger and more specialized Intensive Care Unit and here is why:

When Cardiomyopathy is being diagnosed early on, the risk to end up on a ventilator and on Inotropes is high, especially with Pneumonia also being diagnosed.

The risk for Patients with Cardiomyopathy in Intensive Care is to go into cardiogenic shock which is what happened to your Dad, because his heart simply de-compensated at some point.

This would have warranted for the ICU doctors and the Cardiologist to refer your Dad to a specialist hospital, where they could have optimized and escalated treatment early on!

For example, Inotropic support in Cardiomyopathy is a first response treatment in Intensive Care and if that shows to not improve a Patient’s situation other treatment options need to be looked at.

This leads me to the issues where I believe they have let you and your Dad down!

Given that your Dad has been unable to be weaned off the Inotropes Dobutamine and Noradrenaline the next options would have been ECMO, VAD and the potential for a heart transplant.

Again, given that you hadn’t even heard about those options for your Dad with Cardiomyopathy screams negligence to me!

They have kept you and your Dad in the dark and they have withheld crucial information from you.

Especially with your Dad being so young at age 57, they should have moved heaven and earth early on!

Their job should have been very early on to refer your Dad to a specialist hospital so that he would have had those treatment options available for him!

Again, it shows to me that they are not experienced and that they are out of their depth.

By giving your Dad a tracheostomy early on and by referring him on to a specialist hospital to have more advanced treatment options available for him, he would have been in the best position to get him through this.

Now, I’m not saying that referring him to another specialist hospital is too late by now, however 5 weeks in an induced coma with no advanced therapy options such as ECMO or VAD with a view of a potential heart transplant being made available for him are making it more difficult and challenging for your Dad to access these resources.

If your Dad now gets referred to another specialist hospital, they’d be asking questions like why they haven’t done a tracheostomy earlier and why they are referring him now and why they haven’t referred him 5 weeks ago when he was first diagnosed with Cardiomyopathy.

To illustrate this even further, if you have a broken leg, you don’t want to see a GP, you want to see a specialist surgeon who can operate on your leg!

The same applies to heart conditions. You want to be referred to a specialist hospital that has all the know-how, the skills, the expertise and the resources to manage this to get the best outcome there is!

Even if a referral to a specialist Hospital with a specialized ICU was successful now, after 5 weeks of suboptimal treatment limits your Dad’s chances of a recovery.

For example, when critically ill Patients first get on ECMO for either de-compensated Cardiomyopathy or for Cardiogenic shock, it’s usually early on in their diagnosis when they haven’t been in Hospital or ICU for very long!

Given that you are saying that your Dad has never been off the Dobutamine and the Noradrenaline is a clear sign to me that he’s got chronic Cardiomyopathy and therefore ECMO/ VAD and potential heart transplant should have been looked at very early on!!!

This is when ECMO is the most effective and it can aid as a bridge to a VAD and then as a bridge to heart transplant!

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 it’s negligent!!!

With their procrastinating and delaying a tracheostomy – which from my perspective are also a sign that they don’t know what they are doing- they are not acting in the best interest for your Dad! The induced coma has put a huge prolonged and unnecessary strain on your Dad!

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 handling your Dad’s case. It’s negligent!

I hope this helps Garry, we will discuss in detail on our next call!

The EBooks that I recommend for you are

THE 7 ANSWERS TO THE 7 MOST FREQUENTLY ASKED QUESTIONS IF YOUR LOVED ONE REQUIRES ONGOING MECHANICAL VENTILATION WITH TRACHEOSTOMY IN INTENSIVE CARE!

FOLLOW THIS PROVEN SYSTEM TO AVOID THE 3 MOST DANGEROUS MISTAKES YOU ARE MAKING BUT YOU ARE UNAWARE OF, IF YOUR LOVED ONE REQUIRES LONG-TERM VENTILATION WITH TRACHEOSTOMY IN INTENSIVE CARE!

Wishing you and your Dad all the best!

Patrik

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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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!