How to play a "HIGH STAKES GAME" that only the ICU team knows HOW TO WIN!& "YOUR QUESTIONS ANSWERED"

Published: Mon, 09/22/14

Hi, it's Patrik Hutzel from INTENSIVECAREHOTLINE.COM , where we INSTANTLY improve the lives of Families of critically ill Patients in Intensive Care, so that you can 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!

In last week's BLOG I've shown you why you need to "DISRUPT before you are being DISRUPTED!"

You can check out last week's BLOG here!

In this week's BLOG I want to give you some special insights when you, your Family and your critically ill loved one are faced with the multiple challenges when being in Intensive Care!

Therefore in this week's BLOG I want to show you

How to play a "HIGH STAKES GAME" that only the Intensive Care team knows HOW TO WIN!

I have stopped count of the many Families of critically ill Patients in Intensive Care who slowly but surely realize that when they have a loved one admitted to Intensive Care that they are involved in a "HIGH STAKES GAME".

Those Families of critically ill Patients also go on to realize that in order to "play" this "HIGH STAKES GAME" that they lack the manual, the instructions and a BLUEPRINT.

Families of critically ill Patients in Intensive Care also quickly realize that if their critically ill loved one is in one of the following situations where they are

very unstable and in a very critical condition
in a life threatening situation
in Intensive Care for long-term treatments and long-term stays
having a severe(traumatic) head or brain injury
THREATENED with an "NFR"(Not for resuscitation) or "DNR"(Do not resuscitate) order
approaching their end of life in Intensive Care

that they are involved in an unusual, bizarre, unexpected, volatile, stressful and challenging situation!

Families of critically ill Patients in Intensive Care who experience their loved one being in one of those situations, realize that they are involved in a "HIGH STAKES GAME" and they are at a loss to even "start the game" so to speak!

The Intensive Care team on the other hand is a master at "playing this "HIGH STAKES GAME", they've "played the game" many times and they have structured this"HIGH STAKES GAME" in a way that they are always going to win!

They are "laying down the law", so to speak and if you are like 99% of Families of critically ill Patients in Intensive Care who have no PEACE OF MIND, no control, no power and no influence you might have an idea that you are involved in a "HIGH STAKES GAME" and you still don't question, you still take everything for "FACE VALUE" that the Intensive Care team is telling you and you just simply lack the tools in your toolbox to play this "HIGH STAKES GAME"!

You are literally in an "impossible" situation

And let's put aside that your loved one is critically ill in Intensive Care for a minute!

Let's put aside that your involved in a "ONCE IN A LIFETIME" situation that you can't really afford to get wrong.

Let's put aside for a minute that you don't know what the next few hours bring and let's put aside that your critically ill loved one is in a very volatile situation....

The fact of the matter is that when you are faced with a big challenge in life you need a roadmap, you need guidance, you need a blueprint and you need to have confidence in your abilities to deal with whatever life throws at you!

"To live through an impossible situation, you don't need to have the reflexes of a Grand Prix driver, the muscles of a Hercules, the mind of an Einstein. You simply need to know what to do." - Anthony Greenback, The Book of Survival

And if you don't know what to do if your loved one is critically ill in Intensive Care, you'll have a hard time to play or let alone "win" this "HIGH STAKES GAME" that is Intensive Care!

The Intensive Care team on the other hand knows how to play and knows how to win this"HIGH STAKES GAME"...

They've "played" this game over and over again and they know what to say, they know how they say it, they know when to say it, they know how to gauge your reactions, they know how to gauge your emotions and they know how to take advantage of your emotions...

The rules of the game have been made by the Intensive Care team...

The Intensive Care team "played" this"HIGH STAKES GAME" over and over again and they have "written" the instruction manual and they have made the rules so to speak.

The Intensive Care team has grown so shrewd and adept at "selling" you any situation as being "IN THE BEST INTEREST" of your critically ill loved one.

They can twist and turn situations in many ways, according to what's happening "BEHIND THE SCENES" in Intensive Care to suit their agenda and not yours!

Now, if your critically ill loved one is either

very unstable and in a very critical condition
in a life threatening situation
in Intensive Care for long-term treatments and long-term stays
having a severe(traumatic) head or brain injury
THREATENED with an "NFR"(Not for resuscitation) or "DNR"(Do not resuscitate) order
approaching their end of life in Intensive Care

and you have realized that you are "playing" a"HIGH STAKES GAME" and you are lacking the instruction manual it's time to get proactive!

You have also realized that if you are not prepared to stand up for your interests, if you are not prepared to act differently compared to the 99% of Families of critically ill Patients who have no PEACE OF MIND, no control, no power and no influence, you will get lost in the jungle that is Intensive Care and in fact you may get bruised and battered while getting lost!

Anthony Greenback in his famous quote sums it up perfectly.

Knowing what to do and being on "high alert" is critical

You and your Family need to know what to do to put the odds in your favour.

In order to "win" this "HIGH STAKES GAME", you and your Family need to take matters in your own hands, you need to start acting and behaving differently and you need to believe that you not only can win this"HIGH STAKES GAME", you also need to believe that you can have PEACE OF MIND, control, power and influence, irrespective of the challenges that you are facing!

The Intensive Care team on the other hand just simply fills you in with the cold and hard clinical facts and realities and they can twist and turn that information according to their mainly hidden agenda!

That hidden agenda can change often and at any given time, depending on the interests of the Intensive Care team such as

The financial and monetary interests of the Intensive Care team, i.e. will they make money $$$ or lose money $$$ if they continue treating your critically ill loved one?
The fierce competition for beds in Intensive Care from other Patients awaiting admission into scarce, precious and expensive Intensive Care beds
The medical research interests of the Intensive Care team, i.e. will treating your critically ill loved one give the Intensive Care team the ability to enrol them in a medical research study and attract some $$$ funding?
The politics, the power play, the dynamics, the competing interests, the intrigue and the psychology in Intensive Care is also what's driving the positioning of the Intensive Care team and is also often driving the positioning of your critically ill loved one's diagnosis and prognosis

The truth of the matter is that if you are not on "high alert" when being involved in this "HIGH STAKES GAME" whilst your loved one is critically ill in Intensive Care, you, your Family and your critically ill loved one will be fighting an uphill battle and you will never have PEACE OF MIND, control, power and influence!

You need to get a handle on things very quickly

If you don't get a handle on things quickly, if you don't understand the moving parts "BEHIND THE SCENES" in Intensive Care and how they impact on the Intensive Care team's positioning the "HIGH STAKES GAME" is over for you before you've even realized that it even began.

The question is can you afford to continue to have a weak posture like 99% of Families of critically ill Patients in Intensive Care who have no PEACE OF MIND, no control, no power and no influence?

Can you really afford to have the Intensive Care team drive their hidden agenda?

Can you really afford to not have a STRONG POSITIONING, a STRONG AGENDA yourself and a goal that you want to achieve in a situation where your critically ill loved one is either

very unstable and in a very critical condition
in a life threatening situation
in Intensive Care for long-term treatments and long-term stays
having a severe(traumatic) head or brain injury
THREATENED with an "NFR"(Not for resuscitation) or "DNR"(Do not resuscitate) order
approaching their end of life in Intensive Care

Do you really want the Intensive Care team to direct the goals and the agenda in this challenging, difficult and "ONCE IN A LIFETIME" situation?

Do you really want to continue losing this"HIGH STAKES GAME" that only the Intensive Care team knows how to play?

I know that if you've come that far you want to take action, you want to start asking the right questions, you want to do your own research, you know that you need to stop "sucking up" to the Intensive Care team and you know that you need to have PEACE OF MIND, control, power and influence!

Let the games begin...

Also, check out our "YOUR QUESTIONS ANSWERED" section

where I answer all of YOUR questions

http://intensivecarehotline.com/category/questions/

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 Mum has been in ICU for three weeks now and she is on ECMO for ARDS! Will she survive?"(PART 5)

You can check out previous questions from Ellie regarding her Mum here

"My Mum has been in ICU for three weeks now and she is on ECMO for ARDS! Will she survive?"(PART 1), (PART 2), (PART 3), (PART 4) and (PART 5)

Ellie has also been featured in our PODCAST in an interview that you can check out here.

In this week's episode of "YOUR QUESTIONS ANSWERED" I want to answer another question from Ellie because Ellie's Mum had to go back to ICU.

My Mum has been in ICU for three weeks now and she is on ECMO for ARDS! Will she SURVIVE?(PART 6)

Ellie writes

Hi Patrik,

so my mum is back in a side room in ICU now and on 80% oxygen with the opti flow nasal prong! She has Pneumonia with pulmonary oedema . She's been on super strength antibiotics for 24hours so hopefully by 48 hours it will kick in? They keep putting big space mask on (BIPAP or something like that) which she hates. They have ventilation option in waiting just in case, which I'm praying they don't use, of course.

She has the strength in her arms and legs now and she can claw off the mask with her left hand . She even tricked my brother last night when giving her water with sponges And she asked to hold the cup , then drank the cup by pulling to her mouth! She also fell out of bed a few days ago as she managed to swing legs round slowly and pulled herself up! Her reason was she was practicing her Physio! Amazing to see her strength coming back and hoping not to lose all of that by ventilating her again. I have asked that she is not given muscle relaxant this time .

I'm really not keen on her doctor this week who is very brief and full of cliches. He keeps mentioning her critical myopathy and weakness but she's actually getting stronger and if she had food , water and sleep (she got no sleep last night as they didn't give her her sleeping pills as they were assessing her every hour) she would get so much stronger. Before this infection they were talking, about trying her walking within a week!

The doctors reason for not eating and drinking is that he thinks it's aspiration (as I mentioned before) but she doesn't choke or cough when she has food and water now and I believe her swallow and cough is stronger than he is aware of big he only seems to want to talk in sweeping general terms and not specific to her. I believe the swallowing tests are ludicrous (with water test 2 weeks ago being a teaspoon of water suddenly given to her which is completely unnatural)

My theory for why she got this infection is that she was given strawberry yoghurt 3 tunes a day and super sweet milkshake (fortisip) every 2 hours and was not given mouth care in the normal ward . It was good in the HDU and ICU in London was obsessive and she wasn't even eating then . They didn't do any except maybe twice aday and I believe that the bacteria in her mouth multiplied and got into lungs. I wish I had insisted on it and insisted in giving her veg soup instead of yoghurt as she's diabetic anyway and shouldn't have sweet stuff.

Anyway it's all very frustrating . Thanks for reading . Will update you with any other news. I didn't realise this saga would go in quite so long! It's good to be able to write and know that you know what I'm taking about.

Ellie

Hi Ellie,

I'm so sorry to hear that your Mum is back in ICU.

It's been a hell of a ride for you and your Family and there just seems to be no end in sight.

I can't tell you from afar why the infection has come back.

The lack of mouthcare on the ward may well be a contributor and you're correct to point that in ICU/HDU we are obsessed about mouthcare, especially when Patients aren't eating.

The lack of food on the ward and the lack of proper and regular mouthcare could have contributed to the infection coming back and at the end of the day it's all speculation.

Of course what you have also mentioned repeatedly is that the infection could always come back because of her previous "holes" (Pneumothoraxes) in her lungs with an infection.

Also, you are correct to point out that proper nutrition and also lack of proper and speedy assessment from speech pathology may well contribute to the infection coming back.

What I don't understand is did they keep feeding your mother via NG(Nasogastric) tube or PEG tube(a tube into the tummy via the abdomen). This should have been happening whilst your mother was or still is unable to eat properly.

This would have been and still is crucial going forward to give your mother the nutrition she needs whilst she still is unable to eat.

As for now whilst she is back in Intensive Care, they will hold off any feeds because not only for need of assessing her breathing but also if she needs ventilation she needs to be nil by mouth. God forbid for your mother going back on the ventilator.

What they might do is putting her on BIPAP ventilation(mask ventilation) if opti-flow nasal prongs needs escalation.

The BIPAP may well keep her off the ventilator with a tube and whilst uncomfortable, it's certainly the better option compared to the ventilator with the tube in her throat!

As far as your Mum's Pulmonary oedema(=water in lungs) goes, I am wondering why she's in Pulmonary oedema?

Did they give her too many fluids, did she drink too much, are her kidneys not working properly or did they mention anything about her heart being weak and not coping with fluids?

The things that I mentioned tend to be the main reasons for pulmonary oedema.

Pulmonary oedema(=water in lungs) should not be underestimated and can well lead to ventilation. What they should be doing is to give your mother some Frusemide(Lasix) which is a diuretic drug that increases Urine output and gets rid of excess fluids.

The main thing now is to keep your mother off the ventilator and have the Tracheostomy go back in.

Therefore the BIPAP may well be the way to go even though it's uncomfortable.

Ellie, it is the unfortunate reality that after a long critical illness setbacks do happen and I have seen many Patients who stayed in ICU for a long time coming back and still going out again alive and eventually going home!

I know you and your mother are living through your worst nightmare ever and you need to stay strong, as you have been coping remarkably well with all the challenges and setbacks!

Here are some links to everything you need to know about BIPAP

What is BIPAP?

http://intensivecarehotline.com/bipap/

How long is a Patient kept on a BIPAP machine in Intensive Care?

http://intensivecarehotline.com/how-long-is-a-patient-kept-on-a-bipap-machine-in-intensive-care/

Non-Invasive Ventilation (NIV)

http://intensivecarehotline.com/non-invasive-ventilationniv/

I hope that helps Ellie!

Let me know if you have any questions

Thanks

Patrik

If you want your questions answered just hit reply to this email or email me at support@intensivecarehotline.com and I'll answer your questions!

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long-term stays in Intensive Care
end- of- life situations
Family meetings with the Intensive Care team
withdrawal of treatment situations and/or perceived medical futility
what to do if your critically ill loved one is THREATENED with an "NFR"(Not for resuscitation) or "DNR"(Do not resuscitate) order
severe head and brain injuries

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Patrik Hutzel

Critical Care Nurse

Founder& Editor