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 featured another PODCAST with our guest Ellie, who shared her and her mother's story in Intensive Care "Podcast with Ellie who's MUM has been in Intensive Care for 6 weeks on ECMO for ARDS! Listen to Ellie's story and how she overcame most of the challenges!"

 You can check out last week's PODCAST by clicking on the link here!

In this week's BLOG I want to show you

"How medical research dominates your critically ill loved one's diagnosis and prognosis, as well as the care and treatment your loved one is receiving or not receiving!"

 If your loved one has been admitted to Intensive Care for critical illness, you and your Family are facing one of the biggest challenges during your lifetime! In fact it often is a "ONCE IN A LIFETIME" situation and challenge!

And as a matter of fact, the fear, the frustration, the stress, the struggle and the vulnerability that you and your family are experiencing can be quite overwhelming.

And if you are reading this right now, chances are that you are facing the challenge that your critically ill loved one is

• 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
• approaching their end of life in Intensive Care

and those are situations that you may not have seen yourself in a few days ago and they are also those situations that you don't want to and really that you can't afford to get wrong!

And many of those difficult, challenging and sometimes heartbreaking situations can't be solved by going on autopilot and they often can't be solved by the Intensive Care team "doing their best"!

Why do I say this?

I say this because after more than 15 years of Intensive Care nursing in three different countries and after I have literally worked with thousands of critically ill Patients and their Families and after I have helped, counselled, hold hands and supported those Patients and their Families throughout those massive challenges they've faced in Intensive Care, I have seen both sides of the spectrum, both sides of the coins so to speak!

And by that I mean that on the one hand there are the critically ill Patients, there are their Families that are dealing with the heartbreak and on the other hand there is the Intensive Care team, usually having a mostly hidden agenda, a positioning and interests that goes way beyond your critically ill loved one's diagnosis and prognosis!

It's not your fault

And I know it's not your fault! You and your Family put trust, confidence and faith in the Intensive Care team if your loved one is critically ill in Intensive Care and is facing one of those challenging and difficult situations that I mentioned before!

And the reality and the fact of the matter in Intensive Care however is that especially during those challenging and difficult situations, the Intensive Care team is making decisions "BEHIND THE SCENES"!

"BEHIND THE SCENES"  is where the Intensive Care team is making decisions, "BEHIND THE SCENES" is where the Intensive Care team is positioning your critically ill loved one's diagnosis and prognosis and "BEHIND THE SCENES" is where the Intensive Care team is having their meetings where the power play, the dynamics, the competing interests, the intrigue, the psychology and the hidden agendas come to light that will one way or another impact on the care and treatment your critically ill loved one is receiving or not receiving!

When I first started working in Intensive Care I was very surprised to find out about all the moving parts, about the "BEHIND THE SCENES" stuff, about everything that's hidden away from Families of critically ill Patients such as the politics, the dynamics, the competing interests, the power play, the intrigue, the psychology and most of all the hidden agendas.

If I can do it, you can do it too

And the reality and the fact of the matter is that if I can learn that stuff and if I have gotten those insights, there is no reason why you can't have those insights as well. As a matter of fact, it's absolutely critical for you, for your Family and for your critically ill loved one to get a handle on what's happening "BEHIND THE SCENES" in Intensive Care!

And one of those crucial, often well hidden, highly underestimated and disguised moving parts "BEHIND THE SCENES" in Intensive Care is medical research!

Medical research attracts 6, 7 or 8 figure $$$ funding per year into an Intensive Care Unit! It's a massive industry, where key players such as Intensive Care doctors, hospitals, pharmaceutical companies amongst others have massive interests in driving an agenda that goes way beyond your critically ill loved one's diagnosis and prognosis!

I'll give you a real world example so that it really hits home for you

If your critically ill loved one is facing one of those massive challenges and dilemmas where they are 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
• approaching their end of life in Intensive Care

the Intensive Care team will weigh up their options against many criteria and those criteria include

• the clinical situation such as diagnosis and prognosis
• the financial situation, i.e. will the Intensive Care Unit make money or lose money when treating your critically ill loved one
• the bed situation and the consideration that other Patients require and are waiting for Intensive Care beds
• the medical research interests

Let's just say that your critically ill loved one has been admitted to Intensive Care for a traumatic brain injury and/or head injury after a car accident.

Let's also say that your critically ill loved one has been in an induced coma for three weeks to get the pressures in their brain under control, they had multiple surgeries on their brain during those three weeks and now it's the time to get your loved one out of the induced coma.

At first after the sedation has been switched off to "wake up" your loved one after the induced coma, there are no signs of "waking up"! One week goes by, ten days go by and still no sign of your loved one "waking up".

You and your Family are growing more and more impatient and slowly but surely you are getting more frustrated and you even lose hope.

Head and brain injury Patients are extremely vulnerable and you need to know what to do

The Intensive Care team is now calling a "Family meeting" and in the Family meeting the Intensive Care team is telling you that they think a "withdrawal of treatment" and/or a "limitation of treatment" would be "in the best interest" of your critically ill loved one! The Intensive Care team also suggests that an "NFR"(Not for resuscitation) or "DNR"(Do not resuscitate) would be "in the best interest" of your critically ill loved one!

Related Article:

The 5 questions you need to ask when the Intensive Care team is talking about "withdrawal of treatment" and/or a "limitation of treatment"

You and your Family are shocked and you didn't see that one coming as you were under the impression that head and brain injury Patients would need, time, nurturing and good care in order to "wake up". And you're absolutely right, time, nurturing and good care tend to have all the ingredients for a Patient with a severe head or brain injury to wake up!

However, what the Intensive Care team isn't telling you is that initially when your critically ill loved one was first admitted to Intensive Care, they were enrolled into a medical research study about "hypothermia" for brain injuries, basically a medical research study about cooling your loved one, to minimise brain function and therefore supposedly optimize brain recovery.

Given that there are no signs of "waking up" and given that funds $$$ allocated for medical research would be better spend on other Patients where the Intensive Care team can continue doing medical research, the Intensive Care team therefore has a much higher interest in treating other Patients who are more acutely unwell and who attract $$$ funding for medical research!

You and your Family are totally taken aback and you and your Family didn't see this one coming! And if in this challenging situation 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 and if you don't question, the Intensive Care team can easily drive their agenda.

And once again 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 and if you don't question, you will be taking everything for "FACE VALUE" that the Intensive Care team is telling you!

Don't fall into this psychological loophole

In fact you might even fall into a psychological loophole that many Families of critically ill Patients fall into, by being thankful, by being grateful to the Intensive Care team, because Families of critically ill Patients often feel guilt and shame by being a burden to other people.

I have seen so many Families of critically ill Patients falling into this psychological loophole and if they're not aware about their own feelings, they will continue to be like 99% of Families of critically ill Patients in Intensive Care who have no PEACE OF MIND, no control, no power and no influence!

That's why it's so easy for the Intensive Care team to drive their agenda, because they implicitly or explicitly play with your emotions!

Michael Schuhmacher was given 6 months to "wake up" and how much was at stake?

If you think about it, just as I'm writing this, Michael Schuhmacher, the world famous Formula one former world champion left Intensive Care after nearly 6 months in an Induced coma! He obviously sustained a severe and traumatic brain injury after his skiing accident!

Now I can tell you that many critically ill Patients in Intensive Care are not given 6 months to recover in Intensive Care after a severe head or brain injury and obviously given the publicity of Michael Schuhmacher's case there was too much at stake for the treating Hospital and for the treating doctors!

Therefore, I ask you, how much is at stake for your critically ill loved one? I ask you, how much is at stake for the Intensive Care team?

Often the Intensive Care team is playing a "high stakes game" and only they know how to play!

Therefore it's up to you to quickly learn how to play this "high stakes game"!

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 the first part of this question

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

 You can check out the answer to last week's question here.

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 Ellie's next question as her mother continues to be in Intensive Care!

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

Hi Patrik,

thank you once again for your detailed reply . It's a great help to make me feel more in control and empowered.

As you know, my mother has a hole in each lung that are getting bigger. These are from the damaged lung tissue from the pneumonia and the ventilation. One of the holes is leaking pus on the side of the lung by Rib cage so they have a drain which is taking it out. She is on the Fentanyl for the pain this drain is causing which is like Pleural pain apparently. The antibiotics are working on the infection (although slowly and no change last night)

She is wide awake and not sleeping (no sleep at night for last 3 days) she is looking distressed and she's screaming some of the time. The doc said she will have serious delirium from the infection. Does that sound right to you?

She is taking : 30mg Clonidine per hour and 50mg of Fentanyl per hour which they are weaning slowly .
Also the lorazepam (1mg per hour) and Quetiapine.

Here's my questions to you.

The doctor says bugs can hide in the outside of the holes, so is it really possible to completely clear the pseudomonas or will she need lung surgery (which she mentioned she may need at some point) ?

The doctor confidently says she won't remember this section of the Delirium as the infection is so bad . Is that true? She seems there even though she is not responding to commands.

Do you think she can sense me being here? I am getting to the point where I don't like taking a day off now as I feel she needs me there. But I'm very tired.

How long might it take to get rid of this infection? The doc wouldn't say but she referred to 3-4 months later in conversation. I'm concerned she's not getting rehab as the condition is bad they need to lay her flat at any point so won't sit her up on end of bed . She can't lay on her sides which is a shame, only a tilt. She used to be up every 20 mins so this must be torture to her. She can't move anything but her neck.

She's not getting enough rest and she's not getting enough activity and this might go on for 3 more months? 

The doctor says she will have the delirium whilst she has the infection.

I feel that her human rights are out the window, not allowed to speak or scream, no sleep, no daylight,  no movement , no activity other than the music I bring in and all their tests . No food, no drink, nothing. Etc. She really looks like she is suffering and no one really knows what effect the drugs are having (side effects) that she can't speak of like sickness etc.

The doctor says when she is suffering more than she is getting better then we can have the conversation about withdrawal of treatment. She believes she isn't currently suffering as she won't remember it. Do you know cases where it will be remembered? I'm sure I have read of some?

The doctor says; if her body can't take it then we will listen to it. But the damage done is because of the ventilator. Even though they got her in there saying they will rest her lungs with ECMO, the result is they have damaged her lungs with the ventilator causing holes and an air leak. One of my main concerns is whether her brain can take all of this. Her sanity has always been my concern and I dread to think what psychological effects all this will have not to mention long term effects of the holes in lungs and all the drugs, none of which has been discussed as she says it's too early to tell.

I really want her to have peace and quiet and have put notices up about noise causing stress, lack of healing and adding to delirium. She has earplugs but they only muffle the sound not block it. I went to PALS today to complain about the phone which rings and rings and needs a volume control as its too loud, and the nurses were gathered by her bed talking loudly about another patient. As I said to them, the only thing she is able to do is hear. She can't move or speak. But they all just chat away.

She needs sleep to heal and she's not getting it. Is there anything else I can do?

Also, the lights went out at 11.30pm last night, usually 10pm. Can I ask for them to go out earlier? They take her ear plugs out and lights on at 7pm but she critically ill, she needs as much sleep as she can get. It really frustrates me. I've seen your posts about home care but i don't think that's an option here?

If you can answer these questions that would be really appreciated!

Many Thanks

Ellie

Hi Ellie,

I hear you clearly and I can see that you are very stressed.

That's perfectly fine and in such a difficult, frustrating and challenging situation the only thing you are worried about is your Mum.

That's great and honourable, but you need to take a rest and I will tell you why in a minute.

First of all, take a deep breath and give yourself a pat on your back for coming so far and for being so strong.

Next, take a look at those blog posts here

Does my critically ill loved one in an induced coma or with head injuries feel my presence?

Be more selfish if your loved one is critically ill in Intensive Care

It'll give you more perspective why it's so important that you need to look after yourself!

I believe especially with your 8 month old baby, you are currently going through hell and I'm worried that you might get sick and even more tired.

Especially because you are saying that you are tired and you don't want to leave your mother. I can relate to that and I think it's now you and your baby who needs to come first.

Your mother will need you one way or another, but you need to stay strong and keep your sanity and the only way to do that is by having a rest and some time out!

It's a big issue that Families of critically ill Patients feel guilty and they suffer just as much as their loved one by seeing them suffering.

Here is what you need to know:

1)            Your mother is in a very difficult situation and she's very sick, there is no question about it.

2)            The doctor is correct to say that it's still too early to look at a withdrawal of treatment. Whilst I know how awful it is for you to watch your mother in this condition, your mother is too young to give up! 58 is not old, you mother could live for another 30 years!

3)            If she does recover she will have a long road to recovery and don't underestimate how resilient people can be! I have seen this over and over again in Intensive Care and it's been one of my biggest life lessons that people can be extremely resilient against all odds. For some perspective: You wouldn't be here today if your ancestors hadn't been resilient. Your ancestors lived over millions of generations through war, famine and other catastrophes during times when there were no hospitals, no Intensive Care or any of the other luxuries we have today. Put it in perspective and know that you and your Family are resilient. It's no guarantee, however it's very important that we all know where we came from!

4)            The "holes" in the lungs, which are Pneumothoraxes, are a concern for me and it worries me that after many weeks of having chest drains, those Pneumothoraxes' have not resolved. I know the Doctor hinted at surgery, but again, just like she mentioned that for a lung transplant your mother needs to be infection free, she also needs to be infection free for surgery. It sounds like the infection is getting better and the drains are a high infection risk in and of itself

5)            The Doctor mentioned that your mother is delirious because of the infection. I question that and while the infection may be part of it, I would think it's a combination of a drug induced delirium rather than an infection induced delirium. Withdrawal from drugs is certainly a part of it after many weeks in an induced coma, otherwise she wouldn't be on Clonidine 30 Micrograms/ hour(it's microgram not milligram)- which is a fair amount- but it can be effective for coming out of an induced coma.

6)            Fentanyl 50 Micrograms/ hour is a fair amount as well, however with the chest drains still in place your mother will have some pain and as you've told me they are trying to take your mother off the Fentanyl at least for a while and that's good

7)            I guess your mother still needs the Lorazepam and Quetiapine(which is an antidepressant) for the delirium and also to deal with potential withdrawal from Midazolam/ Temazepam

8)  Can your mother hear you in the situation she's in? Have a look at this blog post, it'll give you the answer

Does my critically ill loved one in an induced coma or with head injuries feel my presence?

Most critically ill Patients don't remember their stay in Intensive Care, they usually only remember "waking up" once they were on the ward. I know how terrible you feel when watching your mother suffer and that's even more terrible because you know there is no guarantee about the outcome

9)            I know you feel like your mother has no human rights, however this is an exceptional and difficult situation and exceptional and difficult situations require different responses and I really think your next step is to remove yourself at least for a couple of days

10)          I know you are worried about lights off and peace and quiet at night. You need to know that critically ill Patients have no or little awareness of a day and night rhythm. Yes, sleep is important and sleep can heal people, there is no question about it. The situation your mother is in however demands that the nursing staff give her the same care and attention day or night. They still need to turn your mother regularly to prevent pressure sores and they still need to do regular mouth care, eye care, washes etc.. to prevent any infections there and to keep everything clean. Therefore keeping everything at a minimum at night is probably what they are already trying to do, however it can be difficult.  ICU is a 24/7 environment

11)          I don't think the earplugs will be the answer as you can be pretty certain that your mother won't remember anything. Your mother has far bigger issues to deal with and whilst the devil can be in the detail, I don't think that earplugs will make or break your mother's situation

12)          Intensive Home care is not an option in the UK only in Australia, check out INTENSIVECAREATHOME.COM.AU for more information

Ellie this is really about you and your sanity! I know how terrible it must be watching your mother in this situation and you need to zoom out for a while to keep your sanity.

A friend of mine was in ICU two years ago with Legionnaires Pneumonia. He's in his late fifties, a heavy smoker and we all thought he was going to die. Given the knowledge that I have, I had little hope for him and he miraculously pulled through and he's so happy to be here. He doesn't remember anything and he now enjoys a good quality of life.

Whilst there are no guarantees for your mother, at this stage there is not much you can do for your mother besides what you are already doing. What you can and what I even urge you to do is to take some time out and do something nice for you. It's summer in the UK, I'm sure you have plenty of things to do. Take your mind off things for a couple of days, it'll do wonders for you!

You need to be strong for whichever way this situation will go.

Once you've gotten some rest and once you've gotten your strength back then it's time for you to look at your next steps.

The next steps for you- and only after you've had a rest- facing this challenge is to get more composure. Maybe you are doing it already, but in any case take a look at this blog post here

 Why YOUR BODY LANGUAGE may be your BIGGEST OBSTACLE to PEACE OF MIND, control, power and influence whilst your loved one is critically ill in Intensive Care

I hope this helps Ellie, take a step back for a couple of days, stay positive and keep up the good work!

Let me know if you get stuck and we can have another chat on Skype!

Sincerely,

Your friend

Patrik Hutzel

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!

Also keep an eye out for our upcoming product launch in the next couple of months! We are NOW finalizing our first product that will help Families of critically ill Patients MASTER, take control, have power and influence in all of the most challenging situations in Intensive Care, even if their loved one is dying!

 The product will be an "IN-DEPTH" education product for Families of critically ill Patients in Intensive Care and a SHORTCUT for Families to have PEACE OF MIND, control, power& influence! The focus of the education product will be on PEACE OF MIND, control, power and influence during the following situations in Intensive Care

• 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
• severe head and brain injuries

The product will be made available in Ebook, Video and Audio format so that our Customers 

can consume the product in their chosen medium!

If you have any questions about our upcoming products or if you have any suggestions 

please let me know at support@intensivecarehotline.com

Your Friend

Patrik Hutzel

Critical Care Nurse

Founder& Editor

WWW.INTENSIVECAREHOTLINE.COM