5 QUESTIONS you need to ask,if the ICU team wants you to DONATE your loved one's ORGANS& Ellie's QUESTION PART 3

Published: Mon, 08/04/14

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 "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!"

You can check out last week's BLOG here!

In this week's BLOG I want to show you

The 5 QUESTIONS you need to ask, if the Intensive Care team wants you to DONATE your loved one's ORGANS in an END OF LIFE SITUATION!

There are many situations in Intensive Care that are extremely challenging and frustrating and where you and your Family are facing your worst nightmares!

Many of those situations you experience when having a loved one critically ill in Intensive Care are nothing short of being a "ONCE IN A LIFETIME" experience and if you and your Family are not armed with good information, the truth of the matter is that you will have no PEACE OF MIND, no power, no control and no influence!

After more than 15 years Intensive Care nursing experience in three different countries and after I have literally worked with thousands of critically ill Patients and their Families, I have learned the hard way that often Intensive Care teams are not telling Families of critically ill Patients the full story, they are not fully and openly informing Families of critically ill Patients about what's really happening!

The fact of the matter is that if your loved one is critically ill in Intensive Care, the things that are happening BEHIND THE SCENES in Intensive Care, one way or another always influence the positioning of the Intensive Care team! What's happening "BEHIND THE SCENES" is also almost always influencing the positioning the Intensive Care team has about your critically ill loved one's diagnosis and prognosis!

What do I mean by that?

OK, let's say your critically ill loved one has been admitted to Intensive Care 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

then you and your Family don't know what to do really and you once again are faced with one of your biggest challenges and nightmares.

The Intensive Care team on the other hand, almost always has an agenda to drive and that agenda is mainly hidden from you and other Families of critically ill Patients in Intensive Care! It's what I refer to as BEHIND THE SCENES!

What if the Intensive Care team asks you to donate the organs of your loved one?

So, let's just say that you and your Family have been told by the Intensive Care team that your critically ill loved one is in an end of life situation and that they are going to die...

You are probably shocked, surprised, angry, despaired, maybe you did see it coming, but in anyways you and your Family will be in a situation that will test your strength, your faith, your beliefs and you will probably feel extremely challenged! You really are in a ONCE IN A LIFETIME situation...

Furthermore, the Intensive Care team is slowly but surely also trying to bring up the topic of organ donation.

It could be that your critically ill loved one is approaching their end of life and that they are young, so therefore the Intensive Care team sees an opportunity to harvest some organs.

Many Families of critically ill Patients feel overwhelmed not only that their loved one is dying, they also feel overwhelmed that they are now faced with a decision that they wish they didn't have to make in the first place.

In almost all cases where a critically ill Patient in Intensive Care is approaching their end of life in Intensive Care and where a potential organ donation is considered, there are time constraints and often tight deadlines, as decisions about organ donation need to be made timely and often under a lot of pressure.

You and your Family are most likely ill prepared

Therefore, given that you and your Family are most likely ill prepared in those situations you need to have some idea on whether the decision you are going to make is the right decision, because you don't want to make such an important decision about your loved one donating their organs or not lightly!

However, the fact of the matter is that in Intensive Care, Families of critically ill Patients are often thrown into those situations very quickly and without forewarning. There is often no time to think things through properly and Families of critically ill Patients are very uncertain about making a decision that they may regret later.

The Intensive Care team on the other hand has been in this situation numerous times and they almost always have a "game plan" so to speak in order to get what they want.

Therefore, it is very important that you as a Family member of a critically ill Patient have a "game plan" too.

Again, having been involved in dozens of situations where Families have been asked by the Intensive Care team whether they want to donate the organs of their critically ill loved one in an end of life situation, you need a road map, a guideline and some questions so that you can make sure that you are making the right decision in this challenging and ONCE IN A LIFETIME situation!

I have also found that after more than 15 years Intensive Care nursing in three different countries and after having worked with literally thousands of critically ill Patients and their Families that there are five distinct questions Families of critically ill Patients need to ask if the Intensive Care team asks them about donating the organs of their loved one. The questions that I am about to share with you are questions you need to ask either if your loved one is considered as "brain dead" or is considered for "donation after cardiac death"(DCD).

1. Do you feel COMPELLED to say "YES" because you feel obliged or even GUILTY to "give back" to the Intensive Care team, because they tried to work hard and tried to save your loved one's life?

If you answered "YES" to this question, then you need to look at the psychology and the dynamics of the situation. Most Families of critically ill Patients in Intensive Care feel guilty and even obliged and also often overwhelmed by the perceived power and the perceived authority of the Intensive Care team.

The good news is that you can relax and that you don't need to feel guilty or obliged and you don't need to feel intimidated by the perceived power of the Intensive Care team! After all it's only perceived and not even real!

During those stressful, difficult, overwhelming and "ONCE IN A LIFETIME" situations, you and your Family need to look at the psychology of the situation and because you and your Family are so far outside of your comfort zone, it's easy for the Intensive Care team to play the "emotional card" and guilt you into something you may regret later.

Again I have seen so many situations in Intensive Care where Families of critically ill Patients said "YES" to either organ donation, to "withdrawal of treatment" or to "limitation of treatment" only to regret those situations later! The reason they said "YES" in the first place was that they didn't understand the dynamics and the psychology at play!

2. Is this end of life situation a real situation or is the Intensive Care team not trying everything they can?

As I said before, the positioning of your loved one's diagnosis and prognosis by the Intensive Care team may be derived from what's happening BEHIND THE SCENES!

For example, does the Intensive Care team really think continuing treatment on your critically ill loved one is hopeless or "futile"?

Or are there other factors coming into play such as that the Intensive Care team needing to free up a bed for other Patients that are waiting for admission to Intensive Care?

3. Does the Intensive Care team think that continuing treatment on your critically ill loved one would take up too many FINANCIAL and EMOTIONAL RESOURCES that they think are better spend on other Patients?

If the Intensive Care team continued treatment on your critically ill loved one, would it take weeks or months in order to get your loved one out of Intensive Care alive?

Do they therefore not want to invest the financial and emotional resources it would take to get your loved one on their way to recovery?

Do they see an organ donation and a discontinuation or "withdrawal of treatment" as the easier option?

4. On the other hand, does the Intensive Care team think that by harvesting your loved one's organs they can MAKE MONEY $$$ and do MEDICAL RESEARCH?

Does the Intensive Care team think that by harvesting your critically ill loved one's organs that they have a better "business case"?

This could be that they give some of the organs to another Patient within their unit and continue more viable treatment there, make money or it could be that they give the organs to external Patients but admit another more "viable" Patient into the bed that your loved one currently occupies.

5. Does the Intensive Care team think that you and your Family are "EASY PREY" and do they think that you have taken everything for "FACE VALUE" and therefore you would be agreeable to whatever they suggest?

Have you and your Family really done your own research? Are you and your Family up to speed with everything that's been happening?

Are you aware that Intensive Care is a multi Billion $$$ industry? Are you aware that you, your Family and your critically ill loved one are at the total mercy of the Intensive Care team if you don't look BEHIND THE SCENES in Intensive Care?

Do you really understand what's happening in Intensive Care? Do you and your Family want to belong to the 99% of Families who have no PEACE OF MIND, no power, no control and no influence? Or do you want to belong into that tiny 1% bracket of Families of critically ill Patients who actually have PEACE OF MIND, control, power and influence?

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 in fact the question of the last two weeks were the first and the second 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) and (PART 2)

You can check out the answer to last week's question here. And you can check out the answer to Ellie's first 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 3)

Hi Patrik,

thank you once again for your detailed reply. It's a great help to make me feel more in control and empowered. Yes you are right about the time out.

I had Saturday off and went in today. The doctor and nurses are taking on board my questions and queries so that's really nice to know. They are also taking the cd playing and peace and quiet aspect seriously with improvements.

My current focus is now with her physical rehab as this is the most distressing thing to me and I have realised is probably for my mum as well. I've been told she has 'critical illness myopathy'. Their rehab focus is on her chest and not with her arms, hands, legs and feet. I have tried to lay down for 20 mins not moving my limbs and it is very hard. Torture really. I too end up moving my head from side and grimacing like my mum does. I desperately want them to do more but have been told she is too weak with no tone and they can't do anything with her yet. But I feel the longer they leave if the worse it will be. If she could move, this whole situation would be much easier I've realised.

If you have any advice in this, I really appreciate it . Thanks again.

I had to send that last email quickly as my baby woke up. So it has occurred to me that my baby waking roughly 6 times a night to breast feed possibly has a lot to do with my intense empathy for my mum as his cry is so primitive and whenever he cries and I comfort him, I think of my mum not bring able to cry or be comforted when she is really most in need of it.

Also knowing my mum has such a vivid imagination (she had synathesia as a child for example) and a tendency for it to be negative I know her mind so well and have always tried to show her the nice things in life , although she had a bad childhood with a violent father, and attracted bad things to her by focusing on the darker side of life.

My next question is,

is there any medication she can be given that can give her mind a nice experience? I have heard that morphine is like sitting in a cloud! She is really into her chemical highs. She tried LSD in the 60s many times and had great experiences. If i could help her have a nice experience somehow that would've so amazing. I'm trying externally with the music and massage. So just a thought. Is it possible!!? (They have weaned her off the Clonidine and taken her off. The Fentynal and swapped with an oral opient that begins with O.

Ellie

Hi Ellie,

Good to hear that you've taken time off!

I think you should continue to make sure that you get a rest.

Your health, your sanity and your wellbeing are at least as important as your mother, if not more important!

As it relates to the physical rehabilitation and the Physiotherapy for your mother, I call BS for everything they are telling you, except that she has "critical illness myopathy".

There is absolutely no reason why they can't commence Physiotherapy for her myopathy and you are correct to say that it is horrible to lie down and not being able to move.

It does make sense that the chest Physio should be priority given the nature of her illness and you are absolutely correct to point out the negative effects by not doing/ offering Physiotherapy on her other body parts.

I strongly believe that holistic care includes focusing on all needs that improve wellbeing.

The fact of the matter is that the Physiotherapists are probably working with limited resources and their focus currently lies on chest physio.

However by improving your mother's general condition through Physiotherapy and through movement can of course improve her condition.

Here's what you need to do in order to get them to do what you want:

1) Ask them how many times a day she gets Physiotherapy

2) Ask them whether they can build in some other Therapy to get her moving and tell them about your experiences when lying down for 20 minutes without moving

3) Tell them about what your thoughts about "holistic care" are

4) Ask them whether your mother gets Physiotherapy on weekends as well

5) Take a look and find out how much time the Physiotherapists spend "doing" Physio and how much time they spend on documentation/ paperwork

6) Ask them whether they spend more time on other Patients that they give a higher priority to, i.e. do they have a bigger interest in treating other Patients first for obvious reasons such as medical research interests and funding reasons?

6) Keep asking for what you want and don't expect anything less

7) Continue to be "difficult and demanding" and take a look at this blog post here

The 5 reasons why you need to be DIFFICULT and DEMANDING when your loved one is critically ill in Intensive Care

It also shows them that you're not giving up, that you take matters very seriously and that you are paying attention to detail.

As it relates to your mother's pain killers, there are a number of things you need to know:

1) Morphine can give you highs and it can also give you hallucinations and nightmares. Most of the times it gives people highs and it works very well for pain. When it causes hallucinations and nightmares it's not fun and in those circumstances it needs to be ceased

2) Given that Fentanyl is off, which I think is good, as it's even stronger than Morphine, they have looked at other alternatives. I assume your mother is now on either Oxycontin or Oxycodone. They are both Morphine based opiates and tend be very effective for pain. Given that your mother is already delirious it'll be difficult to say on how effective Oxycontine or Oxycodone are going to be. They both have a tendency to cause nightmares and hallucinations as well in some Patients(not many)

3) It's also good to see that she's off the Clonidine, unless she is on other stuff now?

Look, as far as your mother's chemical "highs" are concerned, she would have had plenty of those during her ICU stay. Whether Morphine, Fentanyl, Propofol, Midazolam etc... would have caused some chemical "highs" one way or another.

There is no easy way out of this and no "magic pill". I think if anything, it's important to clear her system of as many drugs as possible so that you get to see your real mother.

I hear your concerns with her not being able to cope because of things that happened in the past and I agree to a point that now is not the time to address any psychological damage that may have been caused in the past, however I think if anything it should be less and not more drugs.

I think your and the Intensive Care team's focus should be on clearing the infection, getting her moving through Physiotherapy and also keeping an eye on the chest drains that I think need to come out rather sooner than later.

Weaning your mother off the ventilator will be next!

And also don't forget that you need to continue looking after yourself and that you shouldn't be there every single day!

I hope that helps Ellie!

Keep up the good work and let me know if you have any other questions!

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

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