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 "5 ways you are unconsciously SABOTAGING
yourself whilst your loved one is critically ill in Intensive Care and how to stop doing it!" You can check out last week's blog here.
In this week's blog I want to talk about Why having a loved one critically ill in Intensive Care is "A ONCE
IN A LIFETIME" situation and why YOU can't AFFORD GETTING IT WRONG!
If you are experiencing one of your biggest challenges during your lifetime and if you are facing having a loved one critically ill in Intensive Care, then I think I know how you feel and I also think I know how I can help
you!
The reality and the fact of the matter is that the fear, the frustration, the challenge, the stress and the vulnerability you are currently experiencing leave you having no PEACE OF MIND, control, power and influence
during this "ONCE IN A LIFETIME" situation!
And look, when I first started working in Intensive Care I felt totally overwhelmed and challenged by what was happening all around me. My first few months working in
Intensive Care were extremely challenging and I wasn't sure then whether I could cope. Eventually I knew that I would and if anything, I think I blossomed in the environment finding a lot of inner strength and meaning by absorbing myself into the work!
It also gave me tremendous insights about the Psychology in Intensive Care, how Intensive Care Units operate and what's happening "BEHIND THE SCENES"! I also found that it's just as important to look after the Families of critically ill Patients, than it is to look after the Patients themselves.
Difficult, challenging and "ONCE IN A LIFETIME" situations call for a different response!
This is especially true if your critically ill loved one is not a "straight forward" admission to Intensive Care and is falling
into one of the categories like
- They are very unstable and in a very critical condition
- They are in a life threatening situation
- They are in Intensive Care for long-term treatments and long-term stays(including severe head and brain injuries)
- Where the Intensive Care team is suggesting a "withdrawal or a limitation of treatment" as being in the "best interest" of your critically ill loved one
- They are approaching their end of life in Intensive Care
Those are the situations where you and
your Family might feel like "shit hits the fan" so to speak and those are also the situations where you think that you have no PEACE OF MIND, control, power and influence!
And those are the situations where you consciously or unconsciously realize that you, your Family and your critically ill loved one are in a "ONCE IN A LIFETIME" situation.
Think about it, if you are in a "ONCE IN A LIFETIME" situation and you feel like the odds are stacked against you, you want to turn the situation around, wouldn't you?
And that's where 99% of
Families of critically ill Patients in Intensive Care who have no PEACE OF MIND, control, power and influence tend to become passive and let things happen to them.
Don't let things happen to you, get involved and proactively
seek a solution
Those Families of critically ill Patients tend to be so overwhelmed by the events that are happening around them that they let things happen to them, rather than actively seeking a solution and a way
out of the dilemma.
Listen, you are in a "ONCE IN A LIFETIME" situation and the reality and the fact of the matter is that if your critically ill loved one is in one of those critical, difficult, life threatening and
challenging situations that I described above, you simply can't afford to let things happen to you!
I know it's very easy to get frustrated, angry, negative and passive in those situations, however, whilst you can't control what's happening around you, you can control your reaction to it.
Let's quickly look at some real world examples
For example, if your critically ill loved one is in Intensive Care after they had a cardiac arrest(their heart stopped) and if the Intensive Care team is telling you and your Family that they think the chances of survival for your critically ill loved one
are low, then you can do two things.
1) You can just silently nod and believe what the Intensive Care team has been telling you or
2) You can silently take the message in and think to yourself that the Intensive Care team made a statement, but that you don't think that statement to be accurate and truthful and that you believe that your critically ill loved one will survive and recover
Another example would be on the other end of the spectrum, where your critically ill loved one has been in Intensive Care for a couple of weeks now and your loved one is very sick, they are ventilated, they are in aninduced coma, they may need Haemodialysis for kidney failure, they may have a severe infection(sepsis) and they are
just not getting any better! Your critically ill loved one is 86 years of age, had a good life and you and your Family just don't want to watch their suffering any longer. The Intensive Care team has been hopeful and they
have been telling you that your loved one has a good chance of a recovery. You and your Family however
feel that it's not the right thing to do and you have this feeling that your critically ill loved one wouldn't want to be in this situation and that they would rather die.
Again, you have two choices. You can just silently nod your head to everything that the Intensive Care team is telling you(just like society has wrongly conditioned most people) or you can assert yourself about what you and your Family think that you and your Family want!
If you do that, you will have PEACE OF MIND, control, power and influence!
If you don't assert yourself, then the Intensive Care team will be making decisions for you, for your Family and for your critically ill loved one! If that's the case and if you chose not to take action, not to ask the right questions and if you chose not to look "BEHIND THE SCENES" you will wind up having no PEACE OF
MIND, control, power and influence!
The Intensive Care team is playing a HIGH STAKES GAME and if you don't
know how to play...
In both examples, you and your Family need to realize that the Intensive Care team usually always has a hidden agenda in those situations where your critically ill loved one is in one of those
situations 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(including severe head and brain injuries)
- Where the Intensive Care team is suggesting a "withdrawal or a limitation of treatment" as being in the "best
interest" of your critically ill loved one
- approaching their end of life in Intensive Care
The reality and the fact of the matter is that in any of those situations
there is a lot at stake for you, for your Family and for your critically ill loved one!
A lot is at stake for the Intensive Care team and if you don't know what is at stake for them, you might get this "ONCE IN A LIFETIME" situation wrong and you and your Family might be kept at "arm's length" so to speak by the Intensive Care team!
If you don't understand and if you don't learn quickly that the Intensive Care team makes decisions "BEHIND THE SCENES" that are based on
- other Patients waiting for precious and scarce Intensive Care beds
- the financial viability of your critically ill loved one's stay in
Intensive Care
- medical research interests- is continuing treatment on your critically ill loved one interesting for the Intensive Care team and their medical research interests or are they better of reallocating resources to other Patients where they can perform medical research and therefore attract 5,6, or even 7 figure $$$
funding
- The Intensive Care team's perception about the "future Quality of life" for your critically ill loved one(after all, it's their perception and not even real)
If you and your Family don't control your reaction to any
of the positioning that the Intensive Care team might have about your critically ill loved one's prognosis and diagnosis, you won't stand a chance to get this "ONCE IN A LIFETIME" situation right!
Controlling your
reaction, asking the right questions and knowing what your critically ill loved one would want and what they would be prepared to put up with and also knowing how resilient they are, they are the tools in your tool box.
Use those tools wisely, because they are the tools for you and your Family so that you can 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/
In this week I answer another question from one of our readers and the question this week is
My Dad is in ICU after a SUBDURAL HAEMATOMA, he's had MULTIPLE SURGERIES and he's NOT WAKING UP! Help!"(PART 1)
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 84 year old, previously active father is on a ventilator and the dialysis machine in Intensive Care, will his kidneys ever recover?"
You can check out the answer to last week's question here.
In this week's episode of "YOUR QUESTIONS ANSWERED" I answer another question from one of our readers and the question this week is "My Dad is in ICU after a subdural haematoma, he's had multiple surgeries and he's not waking up! Help!"(PART 1)
Laura from Ireland writes
Hi Patrik,
Thanks for all the information you provide
on your blog and through your emails.
My dad is 64 and was admitted to hospital 6 weeks ago today on Friday 21st March. He had
a Subdural haematoma (left and right side) which required minor surgery of 4 burr holes to drain the fluid.
However the following day, Saturday, the fluid on the right side was running pink so they knew
the bleed was continuing so decided to make a bigger opening on
right side to take a better look. There were some surface tethered veins which the surgeon corrected and replaced the
bone.
My dad was very uncomfortable
and slurring on the Saturday night and Sunday and we knew something wasn't right. On Monday morning he was difficult to wake and the ICU nurse spotted that his right pupil was much larger than the left. They decided to perform a Craniotomy on the right side
to relieve pressure and see what was happening. It turned out the bleed had reoccurred but was mopped up and the bone flap replaced.
By the Wednesday the pressure was not subsiding so they decided to do a 4th surgery to extend the craniotomy and remove the bone flap completely.
The neurosurgeon was happy with how all the
operations went and explained he expected the midline shift that had occurred to correct itself now that there was a significant bone removal from the skull.
My dad was put in an induced coma. During this time they had some problems regulating his temperature and he was making some jerking arm movements which they treated with anti seizure
medication as a precaution. (Although the neurosurgeon didn't think they were seizures) He also had a chest infection with was treated with some very strong antibiotics.
After 2 weeks the neurosurgeon decided to take my dad out of the induced coma as after all the problems my dad was now stable, but it is now 4 weeks later and my dad still hasn't woken up.
All his vitals and other
organs are absolutely perfect and even though he has a Tracheostomy to protect his airway he is off the ventilator and breathing on his own. He had a CAT scan and MRI and neither show any reason why my dad isn't waking up although there appears to be some swelling of the brain stem which the neurosurgeon can't understand as all the operations were surface brain and performed very quickly when each problem arose. Also the correction of the midline
shift is happening slower than expected.
My dad's eyes are closed however we can see his blink behind his eyelids. He also responds to pain although they are saying its in a very primitive way. His heart
rate and breathing change when we are in the room (even the head of ICU acknowledged this as the nurses had reported it to him).
The Intensive Care team is all "doom and gloom" but we as a Family stay positive
Our problem is that the head of ICU and a couple of the ICU nurses are giving a very poor prognosis and are saying my dad may not wake up at all. As a family we are remaining positive and spend each day in the hospital talking to dad and putting on his favourite music and tv shows.
We are hoping dad will be moved to a private room on a high dependency ward in the next week once the hospital can figure out how to provide his care outside the ICU setting. We live in Ireland where facilities are not very readily available for brain injury/trauma.
I was looking for your advice on this case as the hospital have never experienced 4 brain surgeries in less than one week and seem to be comparing my dad's case to people who have just had one surgery. The amount of surgeries would appear to be traumatic in itself?
Also, I was wondering if you have any advice on how
we can further stimulate dad in the hope that this will rouse him from coma, they are saying the longer the coma continues the less chance of recovery.
Just another thing I forgot to mention, my dad's blood results came back this week and it turns out he has Factor 13 blood deficiency, which is very rare and explains why the bleed didn't stop after the surgeries.
I am sorry for the length of this email however I wanted to give you a full picture of my dad's situation.
I appreciate you taking the time to read this and would really like to hear your views.
Many thanks
Laura
Hi Laura,
Thank you for your email.
I'm really sorry for the
situation that you, your Family and your Dad are in. It's a terrible situation to be in and it's also very often a "ONCE IN A LIFETIME" situation and you want to seek the right type of advice in those situations!
You've given me enough information so that I can shed some light on your situation.
You see, the first thing that stands out for me is that your Dad has had four surgeries on his
brain in one week. That's massive and you are pointing out correctly that the hospital would find it difficult to compare your Dad's case to any other case, because they just have never experienced this before!
I can tell you that even in big metropolitan Intensive
Care Units with big trauma Intensive Care Units they wouldn't see many Patients having four brain surgeries in a month, so therefore you are thinking in the right context that your Dad's situation appears to be exceptional, given the number of (brain) surgeries he went through within a very short period of time.
Therefore it seems to be nothing unusual from my experience, that the CT and MRI both show a normal brain after the surgery that shouldn't stop your father from "waking up".
You have also mentioned your Dad's Factor 13 blood deficiency. It's not quite clear to me whether this was known before admission to hospital or whether it was only diagnosed during his current hospital stay?
Higher risk of bleeding with Factor 13 deficiency
Either way, your Dad would have been at a higher risk for a bleed to occur at any given time
with the Factor 13 deficiency and it would explain why the bleed reoccurred after the first
surgery, however with head and brain injuries, I have always seen some Patients with re-occurrence of bleeding. Not a huge amount, but there are always some Patients who re-bleed.
Normally what happens in brain and head injuries is that Patients don't have
anticoagulation(blood thinning) medicine after their surgery- which is different compared to other types of surgery, because those Patients always get anticoagulation medicine to prevent deep vein thrombosis- however in head and brain injuries normally no anticoagulation is given, due to the fact that the risk of a bleed in the brain needs to be avoided at any cost.
Normally, an induced coma after head or brain injuries is done to protect the brain and to give the brain time to recover and especially with the midline shift,
the induced coma is also "buying" time for a midline shift to resolve.
CT's and MRI's may look normal and Patients still don't "wake up"
You didn't mention any abnormalities in the latest CT/MRI scans, therefore your Dad should "wake up" according to those pictures. However this is what happens right across the board with head or brain injuries that CT's or MRI's look "normal" and Patients still don't "wake up".
And here lies the crux of the issue and I can tell you that in more than 15 years of Intensive Care nursing in three different countries, the biggest difference in
some Patients "waking up" and others who don't is time.
Imagine, a brain that has been operated on four times in less than one week has undergone massive trauma and it therefore takes time.
The biggest difference is often the culture within Intensive Care and the time given to Patients
I can tell you that the biggest difference I have seen in Patients who recover from sever head and brain injuries are the ones who are given time, patience and nurturing.
Once out of Intensive Care, special rehabilitation for brain injuries might be next.
It doesn't surprise me that the head of the ICU and even some of the nurses paint a "doom and gloom" picture. The head of the ICU, even though he won't admit it, wants the ICU bed available, because especially if your Dad has been in ICU for six weeks now, they are
counting the numbers.
You should ask the Intensive Care team how long they would expect it takes for your Dad to "wake up" and you should also ask how long they are prepared to look after him.
Patience, nurturing, time, positivity and a "can-do" attitude are important ingredients
I have worked in some ICU's where we had head or brain injuries for months and we nursed them with
patience and from my perspective it made all the difference. Patients recovered. It took a long time, yes, but with ongoing stimulation, patience, nurturing, positivity and a strong believe that it's doable. Those Intensive Care Units had a vastly different philosophy and culture compared to other Intensive Care Units.
This is not the ultimate recipe for a successful recovery but it tends to have all the ingredients.
Don't buy into the "doom and gloom" and follow your gut feeling
Some other Intensive Care Units that I worked in had a very negative culture about head and brain injuries and when the earliest sign appeared that a Patient may not "wake up" the Intensive Care teams have been very quick in painting a "doom and gloom" picture, because they simply don't want to spend the time, the energy and the resources that it takes to get Patients and their Families through this difficult and emotional roller coaster. Those
Intensive Care teams tend to be very good at "selling" a "withdrawal of treatment" and/or a "limitation of treatment" as being "in the best interest" of their critically ill loved one to the Families of those Patients.
It's also often not perceived as "sexy" by the
Intensive Care team to continue treating Patients that don't require the latest technology or where they can't do the latest research and so on.
Related articles:
Something else that I can see is the difference in the perception from the neurosurgeon and the Intensive Care team. Generally speaking the
neurosurgeon would never tell you that the surgery performed would be unsuccessful. And the neurosurgery team would probably like to have your Dad in Intensive Care for a long time to come until he can recover, however they also know about the resource constraints and the pressures in Intensive care for beds.
Therefore there often is a difference in perception about prognosis form the Intensive Care
team's and from the neurosurgeon's perspective. If you have read my "INSTANT IMPACT"
report you would have discovered the difference in perception from different medical teams there.
Stimulation and good nursing care can make all the difference!
Furthermore and that is another big "take away" from my perspective. Even though CT's and
MRI's are giving us a lot more insights about the brain nowadays, even the neurosurgeons or the neurologists don't know enough about the brain and therefore their prognosis remains vague as well. The brain has a life on its own and I really think that time will be the answer to
your and your Dad's dilemma.
You are also asking what you can do to stimulate your Dad further?
Some simple but practical steps
- Having good nursing care with a routine such as brushing teeth regularly, having regular showers and regular and good night sleep
- Getting your Dad mobilised and out of bed regularly at least twice a day
- Getting your Dad in a room with some natural daylight
- Getting your Dad outside regularly
- Having regular and experienced nursing staff looking after him
Those things need to occur regularly though and you may have to keep asking for those things if they are not happening. Don't take "NO" for an answer!
Also, has a Neurologist been involved in order to do further testing such as performing an EEG
http://intensivecarehotline.com/electroencephalograph-eeg/
An EEG can
determine brain activity and can also shed more light on future prognosis!
From my experience Intensive Home Care is the best option!
Also, have you thought about getting your Dad home? I don't know the situation in Ireland, however for example in Australia, Germany, Austria, Switzerland and in the US, Intensive Home Care nursing is an option for Patients with Tracheostomies and being in a home care environment can make all the difference. Check out INTENSIVECAREATHOME.COM.AU for more information.
I have worked in the community
with Tracheostomy and/or ventilated Patients as well and I believe it's the best option, however it depends on service availability of course. Home Care is often a win-win situation, because Patients and Families are in an environment where they want to be and it tends to be more cost effective and it frees up the much needed Intensive Care bed.
Don't get too caught up in "experts opinions" and listen to your deepest source of wisdom
Finally, listen to your gut feeling. Irrespective
of what the Intensive Care team and the neurosurgeons are telling you, what do you and your Family deep down think is going to happen? What do you and your Family deep down know about your Dad? Will he recover, will he not recover?
Families of critically ill Patients often get caught up by the Intensive Care
team's "expert opinion" and in the process they forget one of their deepest sources of wisdom which is their gut feeling and the knowledge they have about their loved one.
Because if you give too much weight to the
Intensive Care team's "expert opinion" you would have given away your power, control, influence and Peace of mind straight away...
I hope this helps Laura and please let me know if you have anymore questions.
I wish you all the best, strength, faith and good luck in your challenging situation!
Sincerely, your friend
Patrik Hutzel
Keep looking out for PART 2 of the question next week!
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
- 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