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!
In the last blog I talked about
You can check out the last blog by clicking on the link here.
In this week’s blog I want to talk about
“Pulling the plug” and dying in Intensive Care without forewarning or discussions?
Before I get into today’s topic I want to share a quote with you that I wrote on today’s topic and the quote says
When critically ill Patients in Intensive Care approach their end of life, families of critically ill Patients should be fully and transparently informed about the things that are taking place towards the end of life of their critically/terminally ill loved one.
Unfortunately talking about death and dying is not “sexy” and it causes discomfort, stress and angst even amongst the most seasoned health professionals in Intensive Care!
If you think about it, if Intensive Care teams are unable to talk about death and dying in a way that explains processes, procedures and also outlooks to families who are about to lose a loved one, how can families of critically ill Patients in Intensive Care even cope with this stressful and disturbing situation?
The unfortunate reality is that many doctors and nurses within Intensive Care haven’t faced their own mortality and therefore it’s very uncomfortable and distressing talking about death and dying of a critically or terminally ill Patient.
It’s even more difficult to sit down with a family of a critically or terminally ill Patient, look them in the eye and tell them that their loved one is about to die.
Intensive Care teams have a duty of care towards their Patients and their families and they must explain to families of critically or terminally ill Patients what they can or can’t expect in an end of life situation.
The unfortunate reality is that even in places like Intensive Care, end of life situations are not managed well and many families still feel like the rug has been pulled out from under their feet when they are about to lose a terminally ill loved one, because no one has explained to them what to expect in the last hours or days of their loved one.
Let’s get into today’s topic.
Last week I was dealing with a Client family who was extremely stressed!
It came to no surprise to me that they were stressed after I’ve got to hear their story.
When the client first contacted me I could very quickly hear that they felt completely overwhelmed, extremely vulnerable and completely outside of their comfort zone!
The lady on the other end of the phone could barely speak and the lady was looking for words to describe the situation her and her family were in.
It turns out to be a very sad story and a story that I feel worth sharing as it shows unfortunately where many Intensive Care Units fall short, especially when it comes to end of life situations.
It’s a story about lack of communication, lack of information and also lack of understanding!
After the lady shared the desperate situation her and her family were in, it turns out that her 73 year old mother had a heart attack about three or four weeks ago.
I knew that I could help the family by counselling and consulting them through this very difficult and “once in a lifetime” situation.
My client’s mother also had a pacemaker inserted about 3 months ago for long-standing atrial fibrillation(=a heart condition with an irregular heart rhythm).
After my client’s mother had the heart attack, she was rushed into the Emergency room/Emergency department and she had a PTCA stent to unblock some of her arteries that supply the heart with oxygen.
My client’s 73 year old mother then ended up in Intensive Care where she developed a Pneumonia.
Now, it’s nothing uncommon to develop a Pneumonia after a heart attack, especially when there is right heart failure involved.
My client was telling me that her mother then spend the next three weeks on a ventilator in Intensive Care in an induced coma.
During those three weeks of my client’s mother being in an induced coma and on a ventilator with a breathing tube, apparently the Intensive Care team stayed very vague and disengaged with their communication with the family.
According to my client it was all “doom and gloom” from the start and the Intensive Care team was telling them that it’s unlikely their mother and wife would recover and that chances are she may not survive.
The family was kept very much in the dark and they were not transparently informed about the care and treatment their mother and wife was receiving or not receiving.
My client and her father were telling me that during the three weeks of their mother staying in Intensive Care, the Intensive Care team was never explaining to them what they were doing exactly and what their plan was or what a likely outcome would look like.
My client and her father were telling me that the Intensive Care team only asked them “do you have any questions?” and my client, her siblings and their father had no idea where to start because they just felt so overwhelmed by this whole situation.
Fast forward, on a Sunday my client and her family were told that the Intensive Care team was planning to take out the breathing tube(=extubation) and take their mother off the ventilator.
When my client and their family asked why they would be taking out the breathing tube, they were told that their mother wasn’t improving and that she will die.
This was actually the first time the Intensive Care team was clearly articulating that their loved one may not survive their critical illness and that they will in fact die.
My client said the Intensive Care team hinted towards their loved one “not doing well” and “being critical” but despite their negativity they actually never mentioned that death might be a likely outcome.
According to my client, hours before the Intensive Care team removed their mother’s breathing tube and removed the ventilator, they were told that after the removal of the breathing tube they were planning to send their mother to a hospice to die.
No forewarning or no communication was happening prior to the Intensive Care team making this life or death decision.
No other options such as a second medical opinion or options like INTENSIVE CARE AT HOME were given.
My client and their family were not given any choice and they were not transparently informed whether there are any other options or why the Intensive Care team thought their mother was dying.
There were no explanations being given what they had tried or hadn’t tried during the three week stay in Intensive Care.
It’s a classical case of non-communication, not being transparent but also being a case of families in Intensive Care “trusting blindly”.
- The 5 reasons why you should not trust the Intensive Care team blindly if your loved one is critically ill in Intensive Care
Normally what happens in Intensive Care when critically ill Patients get extubated(=removal of the breathing tube) there is a chance that critically ill Patients may not be able to breathe without the breathing tube and they then would have to be re-intubated. (re-insertion of the breathing tube).
Or in other words, if Patients are to be extubated and the plan is to not have them re-intubated it’s called a “one-way-extubation” and it basically cuts off options for Patients and their families.
That may well be the right thing to do in some cases and in some real end of life situations, especially if there is transparency and mutual agreement between the Family and the Intensive Care team.
Not sitting down with families of critically ill Patients in Intensive Care and discussing end of life situations, end of life options such as INTENSIVE CARE AT HOME, what to expect, what not to expect and also supporting and counselling them through the process is appalling from my perspective.
My client and their family suffered tremendously during this process because they had no idea what was happening and they were totally unprepared for this difficult and challenging situation, where they were about to lose their mother and wife.
- The Difference Between “Real” And “Perceived” End Of Life Situations When Your Loved One Is Critically Ill In Intensive Care!
By the time the family contacted me, their mother had already been transferred to a hospice and then it only dawned on the family that their 73 year old mother only had hours to live.
By the time the family contacted me they had realised that their mother is really dying and that nobody had taken their time to explain to them that this is really happening, nobody seemed to care if they were OK and if they understood what was about to happen.
To make things worse, when my client’s mother had the breathing tube removed and then was sent to the hospice she had to be taken there by ambulance which was an hour away from the Intensive Care unit.
Again this all wasn’t the family’s choice and this all happened within 24-48 hours without any preparation.
I guess by now you appreciate how awful my client and their family felt, literally watching their mother’s life slipping through their hands without being counselled or consulted about the process or what to expect.
They really felt like “the plug has been pulled” without any forewarning or discussions…
It is unfortunately what happens all too often in Intensive Care.
Yes, people die in Intensive Care, nobody is disputing or denying that, however the way it’s being handled makes all the difference and it makes the the difference when families of critically or terminally ill Patients can make informed decisions, have peace of mind, control, power and influence.
None of it was the case in my client’s situation and unfortunately I have seen similar situations over and over again in more than 15 years Intensive Care nursing in three different countries, where I literally worked with thousands of critically ill Patients and their families.
I have also worked as a Nurse Unit Manager in Intensive Care for more than five years and I have seen my fair share of what’s happening in Intensive Care, how families have been dealt with and I have a very good understanding of what’s happening “behind the scenes” in Intensive Care and how it impacts on families and their loved ones in Intensive Care!
And because I’m talking to my clients daily over the phone, on Skype, face to face in-person and via email in my 1:1 counselling and consulting practice daily, I know first-hand how they feel and what they are going through when they are faced with this “once in a lifetime” situation having a loved one critically or terminally ill in Intensive Care!
Coming back to my client this week, by the time they contacted me and by the time I got to speak to the nurse in charge of the hospice, I realized that it was unfortunately too late to change the course of the outcome.
The nurse in charge explained to me that my client’s 73 year old mother was literally on her death bed and they expected her to die within the next few hours.
48 hours before, my client’s mother was still in Intensive care and nobody had prepared them for this…
It felt to me like there was nobody there to hold their hand and to explain to the family what to expect. They literally felt abandoned…
Now, I know for many of you this sounds like a horror story and that’s most likely how my client and their family felt and it was very stressful for me too, because all I could do at that stage was making sure that the family felt supported and making sure that their mother wasn’t suffering.
It’s been very disappointing that my client had not been prepared for this and it’s also very disappointing that my client had not been given any options like INTENSIVE CARE AT HOME, where their mother could have been sent home and have her last few days at home.
My client and their family really felt like they were pushed out of the door so that the Intensive Care Unit can have their mother’s bed for the next Patient, then she was rushed to a hospice where my client’s 73 year old mother literally died within hours…
That’s not how you treat Patients at their end of life and it’s also not how you treat families in Intensive Care, especially without giving them forewarning, explanations or options such as INTENSIVE CARE AT HOME.
It’s also extremely disappointing to see that the Intensive Care team wasn’t transparent in the treatment they were giving or not giving my client’s mother leading up to her death, maybe they didn’t try everything they could…
It’s also a story of families of critically or terminally ill Patients really needing to do their own research from the start and not rely on the Intensive Care team.
You’ve got to take responsibility to be in a position to make informed decisions, get peace of mind, control, power and influence when your loved one is critically or terminally ill in Intensive Care!
You’ve got to take responsibility to be in charge of your critically ill loved one’s fate and destiny.
You can start today and you can use this website as starting point with plenty of free resources available… and if you get stuck contact me.
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?
You get to that all important feeling of making informed decisions, get PEACE OF MIND, CONTROL, POWER AND INFLUENCE when you download your FREE “INSTANT IMPACT” report NOW by entering your email below!
In Your FREE “INSTANT IMPACT” report you’ll learn quickly how to make informed decisions, get PEACE OF MIND, real power and real control and how you can influence decision making fast, whilst your loved one is critically ill in Intensive Care! Your FREE “INSTANT IMPACT” Report gives you in-depth insight that you must know whilst your loved one is critically ill or is even dying in Intensive Care! Sign up and download your FREE “INSTANT IMPACT” REPORT now by entering your email below!
In your FREE “INSTANT IMPACT” REPORT you’ll learn how to speak the “secret” Intensive Care language so that the doctors and the nurses know straight away that you are an insider and that you know and understand what’s really happening in Intensive Care!
In your FREE report you’ll also discover
- How to ask the doctors and the nurses the right questions
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
- How to eliminate fear, frustration, stress, struggle and vulnerability even if your loved one is dying
- 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
- You’ll get real world examples that you can easily adapt to your and your critically ill loved one’s situation
- 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 BLOG 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!