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!
This is another episode of “YOUR QUESTIONS ANSWERED” and in last week’s episode I answered another question that our readers ask quite frequently and the question last week was
You can check out the answer to last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer another question from one of our readers and in this week, Trudie from the UK asks
My Mother is in ICU after her HEART STOPPED! We believe that the Intensive Care team is keeping her SEDATED & PARALYZED for LONGER THAN NECESSARY, what should we do? (PART 1)
My mother is currently in intensive care in England. At about 5 am on Sunday morning my father heard her making a choking noise (agonal gasping??) and nudged her. There was no response. He shouted for my brother, who tried to get her to respond and then started CPR immediately. The ambulance arrived and the paramedics restarted her heart. She had a couple of shocks, but it only restarted after an IV was put in. Her heart started beating and she was transferred to hospital. At admission she was still unconscious but breathing.
At hospital they checked her heart with an angiogram and it was fine. CT scans showed no sign of stroke or pulmonary embolism. The scans all looked very clear at this stage, except for some pneumonia is the top left portion of her lung. We still don’t know why her heart stopped. She was short of breath the day before and has very bad (brittle) asthma. The doctors don’t seem to think this was the issue, but they don’t seem to know what was.
She did well Sunday – was very stable, but obviously highly sedated. She was opening her eyes and her pupils were dilating. They started removing sedation yesterday she started to move about but without apparent consciousness, e.g. didn’t squeeze the nurses hand kept trying to get up, gagging at the tube in her mouth.
When my brother, father and myself were there we looked at her and she appeared to look at us. We asked her to blink if she could here us and she gave a strong and definite blink. We asked her a series of questions and to answer by blinking and to us non medical professionals the blinks looked purposeful and her head was turned to us. The nurses didn’t see this unfortunately. I also believe after request she squeezed my hand weakly (she was still half sedated at this point). The doctors thought her blinks might be involuntary facial ticks and of course they are experts, but they also didn’t witness it.
Anyway, we objected to being asked to leave the bedside at one point ‘whilst they freshened her up’ and it ll got a bit tense. We did our best to explain later that we’re a bit overawed and want to be involved (we weren’t rude, but we were persistent and questioning). However, following this a decision to re-sedate her was made and she’s been given paralysis drugs to stop her trying to take over her breathing (apparently her patterns were interfering with ventilation).
In the morning the nurse explained the ventilator was on a mode where she could take over ventilation. Later that day after sedation the ventilator was still on that mode and she had started to breathe. The nurse seemed pleased, and then a doctor immediately came over and told her to turn the ventilator off that mode. I’ve just phoned this morning and she is still heavily sedated and more paralysis drugs have been admitted.
Sorry for so much detail – I am trying to include everything that might be relevant. My question is – we understand she’s probably suffered from hypoxia and will have issues from that, but even so wouldn’t a transition through a vegetative state, to minimal consciousness (where I think she is) and then possibly on to further recovery be possible and at this early stage wouldn’t it be anticipated in fact? Should we object to ongoing sedation and paralysis drugs? How best should we get the doctors on side at this point? What are the pertinent questions for the medics? I should add that my mother is 59 and apart from asthma and a bad back is in good health.
Thanks for looking at this. I hope you are able to give me a few pointers. I also understand that outcomes for my Mum might be poor, but don’t want to write her off yet.
I am very sorry to hear what you, your Family and most of all your mother are going through!
It must have come as a big shock to you and your Family, however reaching out for help and doing your own research is a good thing to do and I strongly recommend it.
I also want to thank you for writing in such great detail, as it will help me to answer your question appropriately.
It’s difficult to say for me from a distance what has caused your mother to go into cardiac arrest. The asthma might have caused it, maybe the pneumonia, but it’s all speculation from afar, especially if the angiogram was negative and the CT scans were negative as well.
But let’s look at the current and most pressing issues that you are facing.
And first of all, congratulations for questioning things!
I can see that you are different already! Most families of critically ill Patients in Intensive Care don’t question, they take everything for “FACE VALUE” the Intensive care team is telling them and by doing that they have no PEACE OF MIND, no control, no power and no influence!
From what you are describing there is absolutely no reason why your mother should have been re-sedated and even been paralysed.
It sounds to me like you and your Family know your mother well and if you think that she was communicating appropriately non- verbally, then there is no reason why the Intensive Care team should question that.
Having said that, it is nothing unusual when critically ill Patients come out of an induced coma that they are fading in and out of consciousness and responses can vary.
However, it sounds to me like your ability to appropriately assess your mother’s responsiveness has been questioned by the “expert” Intensive Care team.
And they are experts in their own right, however they should absolutely listen to you and they should be paying attention to your observations.
I can also only congratulate you for not wanting to leave the bedside of your mother while the nurses wanted to “freshen up” your mother. Keep standing your ground!
The first question you should ask if they want you to leave the bedside is “Do you have anything to hide?”
I think it’s more than appropriate to have family members at the bedside if basic nursing care is done.
Most Intensive Care teams however prefer not to have Families at the bed side for “basic nursing care” or for “ward rounds”.
I think that’s highly inappropriate in this day and age and the problem is that most families of critically ill Patients in Intensive Care are buying into the “perceived authority” and the “perceived power” of the Intensive Care team.
Even worse they are intimidated.
So keep standing your ground and don’t worry what they think or do, just continue on the path that you believe is the right path to pursue.
I also strongly recommend that you continue to control what you can control- which is obviously by questioning things and doing your own research- and don’t worry too much about what you can’t control.
As far as the re-sedation and the paralysis for your mother goes after she has shown signs of gently waking up, know this.
You are absolutely correct to point out that “transitioning through a vegetative state, to minimal consciousness (where I think she is) and then possibly on to further recovery” would be desirable and it also sounds to me like it’s achievable from what you are describing.
Of course, critically ill Patients spontaneous breathing efforts can interfere with mechanical ventilation breathing patterns, however paralysis should be a last resort and as a first step, your mother should have been given a chance to “wake up”.
It doesn’t sound to me like she hasn’t been given that chance as yet and if the Intensive care team hasn’t given her this chance then there must have been a medical reason for it.
Given that all her CT scans weren’t showing any damage, I believe it would be very important to reduce sedation, wake your mother up and assess her neurologically.
This is even more important in light of the fact that she had a witnessed cardiac arrest, however it seems unclear whether she had any time without any cardiac output and without perfusion.
If she did have a period with no output, she would be at risk of having a “hypoxic brain injury”, meaning there was no or reduced oxygen perfusion to the brain for less than 3 minutes.
From what you are describing there is no reason to re-sedate and paralyse, as both come with significant risks.
I also believe from what you are describing, reducing sedation, getting your mother to breathe spontaneously on the ventilator as quickly as possible so that she can be taken off the ventilator would be desirable.
Again, mechanical ventilation is more risky than not having a ventilator and unless there is any reason why your mother can’t or shouldn’t be weaned off the ventilator for a medical reason, the Intensive Care team should wean sedation, let your mother breathe on minimal ventilator support if she can and then take her off the ventilator.(extubation)
It also sounds to me that if your mother has been breathing by herself and only then has been re-sedated and paralysed that this might have been the point where the Intensive Care team decided against getting her off the ventilator as quickly as possible and to not let her breathe by herself. It doesn’t make any sense that they have decided against trying to take her off the ventilator from what you are describing though, unless there are any other (medical) reasons that would speak against it.
It sounds over the top to re-sedate and paralyse especially since the nurse in the morning pointed out to you that your mother was breathing spontaneously again.
Especially in light of the fact that the nurse then has been asked by one of the doctors to change ventilator settings again and in light of the fact that your mother is breathing spontaneously makes me wonder whether there are other things going on that you may be unaware of.
The first thing you might be asking is whether your mother is enrolled into a medical research study about ventilation and/or paralysis. This could well be the case and medical research is something that’s always performed on real critically ill Patients without Patients or Families knowing about it, let alone having given written or verbal consent.
Other things you should consider are that whenever there is an “out of hospital cardiac arrest”, in some hospitals that I worked at we used to deliberately keep Patients sedated for 24-72 hours to give them the maximum chance of survival and recovery.
However it doesn’t sound to me like this has been the case with your mother, otherwise you should know about this as you would have hopefully been informed by the Intensive care team.
Your next steps I believe are to ask for a formal “family meeting” with the Intensive Care team and get the facts.
- FOLLOW THIS ULTIMATE 6 STEP GUIDE FOR FAMILY MEETINGS WITH THE INTENSIVE CARE TEAM, THAT GETS YOU TO HAVE PEACE OF MIND, CONTROL, POWER AND INFLUENCE FAST, IF YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE!
- MANAGING YOUR FAMILY AND THE INTENSIVE CARE TEAM WHILST YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE
- THE FAST LANE FOR PEACE OF MIND, CONTROL, POWER AND INFLUENCE WHEN YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE!
Also tell them that you want to be well informed about everything that’s happening and tell them that you don’t want to leave the bedside when the nurses are doing basic nursing care.
I also wouldn’t worry too much to “get the doctors on side”.
The reality and the truth of the matter is that most Families of critically ill Patients in Intensive Care “suck up” to the Intensive Care team and to the doctors in particular, with the result that the doctors do whatever they want anyway.
Therefore your job is to drive your agenda irrespective of what the Intensive Care team thinks.
Continue doing your own research, don’t buy into the “perceived power” and “perceived authority” of the Intensive Care team and keep asking them why they re-sedated and paralysed your mother instead of waking her up and aiming to get her off the ventilator.
This is your path to PEACE OF MIND, control, power and influence.
Also, there are numerous things that are happening “behind the scenes” in Intensive care and if your mother continues to stay in ICU and continues to be critical you might also want to shed more light on what’s happening “behind the scenes” in Intensive Care!
Here are also some FREE resources for Family meetings in Intensive Care
- Family Meetings in Intensive Care or the Elephant in the Room
- How can I be prepared, be mentally strong and be well positioned for a Family meeting with the Intensive Care team?(PART 1)
- How can I be prepared, be mentally strong and be well positioned for a Family meeting with the Intensive Care team?(PART 2)
I also want to address your question from my first quick response about your concern that “being difficult and demanding prejudice them against us and my Mum? I don’t want them to lock us out.”
First of all, you probably have already realised that you and your Family are in a unique and “ONCE IN A LIFETIME” situation. Unique and “ONCE IN A LIFETIME” situations require unique and different responses.
A mentor of mine once told me that “it’s none of your business what other people think about you”.
It’s the best advice I’ve ever been given, because it sets you free from expectations, prejudices and anything else that society or groups of people perceive as “normal” or as accepting. As long as you operate with ethics and from a moral high ground, I believe that this is the best advice that anyone can get!
Your job with your mother in ICU is to have PEACE OF MIND, control, power and influence.
You should stop worrying whether the Intensive Care team might be prejudiced or not. They can’t lock you out. You have rights, so make use of them. The Intensive Care team has a duty of care for your mother.
Your biggest leverage points are to start doing your own research and to start managing the Intensive Care team, something 99% of Families of critically ill Patients in Intensive Care don’t do and that’s why they run into all sorts of challenges and have no PEACE OF MIND, no control, no power and no influence!
The fact of the matter is that the Intensive Care team is managing families in Intensive Care all the time and they are doing it by positioning themselves as the “perceived authority” and the “perceived power”.
That’s how they get away with things like trying to send you out when doing basic nursing care.
So therefore, my advice is to stop worrying about what the Intensive Care team and/or other people think or say.
I hope that helps Trudie. Please let me know if you have any other questions.
I can also be available for a FREE 30 minute Skype consultation.
Thank you& Kind Regards
How can you have PEACE OF MIND, control, power and influence whilst your loved one is critically ill in Intensive Care?
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- 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
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- 5 “killer” tips& strategies helping you to get on the right path to PEACE OF MIND, control, power and influence in your situation
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- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
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- 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 “YOUR QUESTIONS ANSWERED” and I’ll see you again in another update next week! Make sure you also check out our BLOG section for more tips and strategies or send me an email to [email protected] with your questions!
This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
- How the Intensive Care team is SKILFULLY PLAYING WITH YOUR EMOTIONS, if your loved one is critically ill in Intensive Care!