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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 from one of our readers and the question last week was PART 3 of
You can check out the answer to last week’s question by clicking on the link here.
Trudie and her Dad have also been featured in our PODCAST and you can check out Trudie’s and her Dad’s interview here. Trudie and her Dad share their story when their mother was in Intensive Care, while they were dealing with a difficult Intensive Care team! Check it out here!
In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer the next question that Trudie from the UK has, as her mother continued to be in Intensive Care after the cardiac arrest!
So, therefore in today’s episode of “YOUR QUESTIONS ANSWERED” I want to answer PART 4 of
“My Mother is in ICU after her heart stopped! We believe that the Intensive Care team is keeping her sedated & paralysed for longer than necessary, what should we do?”(PART 4)
Hi Patrik,
Thank you again. You have given us immense support and confidence. You are clearly a busy man yourself, but your advice and guidance has been invaluable. I’m pleased to report my Mum was moved out of ICU this morning. I expect we’ll have different battles with different medical teams now and so to all intents and purposes our correspondence is probably at an end (notwithstanding the interview we’ll do with you in a few weeks).
I honestly don’t think we could have been so brave without your back-up and I really believe that our persistence helped my mother – we are the only family (from the ones I met during the course of last week), that wasn’t taken into a side room to be given bad news – seeds were planted, e.g. “she’s making good progress, but she may take backwards steps”, but we weren’t officially ‘groomed’ for the worst.
And I think that’s because we didn’t let up with the pressure and intelligent questioning. It was hard to stay calm and cordial, and although we were clearly difficult, we were never rude or abusive, never raised our voices and often smiled.
Not easy when I wanted to cry and shout quite a lot, but again, that’s where you came in. I could almost hear you in my head. However, as you point out even if we had been rude that shouldn’t prejudice care. My father pointed out that the fear that people have that being difficult will impact upon their loved one indicates that there is something very wrong going on. Yet, we were still told by some family members last week, ‘be quiet, let them do their job, you’ll make things bad’.
I think it’s really interesting that no-one has researched the role of families in supporting those in critical care, but not surprised as the research plays into the power lines you describe. However, I am heartened that nurses like you, and our friendly and supportive nurse on the team here, exist.
The nurse we were impressed by here kept saying how useful our presence was – he was interested in going on to do research, perhaps even into the role of families – I told him about your site and he was genuinely interested – maybe he’ll find you. I expect he’ll be told off for being so open with us, so he may need your support too. There must be lots of others like you both and perhaps you’ll all be able to join up through INTENSIVECAREHOTLINE – you are really agents of change.
I do think it’s really important that we see this all through now, even though my Mum has left ICU. We have emailed the hospital trust governance board, pointing out why transparency is in the ‘best interests’ of the patient and I have constructed a legal argument based on the Mental Capacity Act 2005 to demonstrate this. In doing this I have shown how they failed to adequately implement certain sections of the law and that including us more fully would have remedied this. I have no doubt their lawyers will disagree, but perhaps it will make them think about things a bit.
I am happy to share this correspondence with you if you are interested in logging it (removing personal details) as a resource on your site – although it’s use might depend on the final outcome.
Even though this has all been pretty horrible I’ve learnt so much and I certainly feel empowered by this experience. The doctor I was mainly dealing with was massive and I am very small. The size difference was a metaphor for all the rest of the power differentials. Yet we stood our ground. In a powerless situation we had something positive to do, something that really helped, we had PEACE OF MIND.
We owe you a huge debt and will try and repay that debt by finishing our own small campaign at the hospital.
I would like to add that a couple of years ago my grandmother died in the same hospital following being out on the Liverpool Care Pathway – I don’t know if you know of this, but following a national scandal it is no longer (explicitly) used. I was overcome by grief at that time and my grandfather was full of praise for the hospital (a mistake I think) so I didn’t take my objections further. I deeply regret not being one of the voices that helped overturn a cruel practice that put budgets over people. I will not make the same mistake again.
Thanks again Patrik for your time, your detailed correspondence, fantastic site and wonderful support.
I look forward to doing an interview for the site, and will keep you updated if you wish. And please do let me know if there’s anything I can do to further support your amazing and important work in the future.
Best wishes
Trudie
Hi Trudie,
Thank you for keeping me informed with those positive developments!
I am very glad to hear that your mother has moved out of ICU, well done!
I am also very pleased to know that my advice has helped you through this challenging situation! It has been a pleasure to do so.
Standing your ground, doing your own research and not being intimidated by the “perceived power” and the “perceived authority” of the Intensive Care team always helps and always pays dividends.
I am not surprised that other Families you have met and spoken to have been delivered “bad news” by the Intensive Care team.
This from my experience is often about positioning. One thing that I keep repeating on my blog is that the positioning of the Intensive Care team of a critically ill Patient’s prognosis and diagnosis is almost always dependent on what’s happening “BEHIND THE SCENES” in Intensive Care. And as I have pointed out before, what’s happening “BEHIND THE SCENES” in Intensive Care is so powerful that if Families are unaware of it, they may well miss the boat completely.
By that I mean that the financial interests, the medical research interests, the staffing issues, the bed management pressures and the limited resources in Intensive care always almost imply that the Intensive Care team is painting a “doom and gloom” picture of the prognosis and diagnosis of a critically ill Patient!
This leaves plenty of room for the Intensive Care team to then “twist and turn” the clinical facts and to also keep Families of critically ill Patients at “arm’s length” so to speak.
You and your family weren’t officially “groomed for the worst”, because the Intensive Care team at one point or another realised that they are dealing with a powerful family who questions, who doesn’t take “no” for an answer and who simply is prepared to do whatever it takes to have PEACE OF MIND, control, power and influence!
Unlike other Families of critically ill Patients who have no idea what they walk into when they are first meeting with the Intensive Care team!
That’s why I created some blogs about Family meetings with the Intensive Care team. Check them out here.
- 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)
This often negative positioning of the prognosis and diagnosis of the Intensive Care team also leaves plenty of room for the Intensive Care team to “sell” a “withdrawal of treatment” or a “limitation of life support” as being “IN THE BEST INTEREST” of a critically ill Patient.
Recommended resource:
As you and your father have correctly pointed out, the “seeds have been planted” without Families realising that often a “withdrawal of treatment”, “a limitation of life support” and/or a “DNR”(Do not resuscitate) order or an “NFR”(Not for resuscitation) order is easier to be “sold” to families if the negative positioning and the “doom and gloom” was “sold” in the first place.
The problem however is that from my experience many “withdrawal of treatment” situations are a direct result of the many competing interests “BEHIND THE SCENES” in Intensive Care such as the financial interests, the medical research interests, the staffing issues, the bed management pressures and the limited resources in Intensive care and they almost always play a role when it comes to crucial and literal “life and death” decisions.
I’m also glad to hear that you and your father have identified that other Families do feel intimidated and would never dare to be “difficult and demanding”!
This is exactly what I refer to when I say that 99% of families of critically ill Patients in Intensive Care have no PEACE OF MIND, no control, no power and no influence! They just witness an event, in fact a “ONCE IN A LIFETIME” event and they are just passive bystanders, rather than being pro-active!
And that may well be the right approach, if things are straightforward and if their loved one is a “straight forward” overnight admission to Intensive Care.
However, the minute a critically ill Patient is either
- very unstable and in a very critical condition
- in a life threatening situation
that’s when families need to be on high alert and they can’t just lean back, be quiet and “let them do their thing”!
I am also very glad to hear that you dealt with a friendly bedside nurse who compassionately understood your situation!
I don’t think that he will be in trouble, I constantly live and breathe my bedside nursing the way I approach my information on my blog and I haven’t been in trouble. I strongly believe that authenticity goes a long way and can’t really be challenged.
I am also very proud of you that you have even gone the extra mile and written to the hospital board with a legal argument! I would be highly interested in what comes out of the dispute and would be interested in any communication that comes from it.
Of course names would have to be removed, but I’m sure it would be a fantastic resource to share with other Families!
I can also see that you and your family had real awareness of the situation by you saying that “The doctor I was mainly dealing with was massive and I am very small. The size difference was a metaphor for all the rest of the power differentials. Yet we stood our ground”
Good for you to not only notice and also to have an awareness of the “perceived power”. But you also realised that it is only perceived and not even real.
You could make that paradigm shift and yet so many families in Intensive Care can’t make that paradigm shift and that’s why they continue to feel intimidated!
Related article:
Last but not least, I am well aware of the “Liverpool care pathway”. I am also glad to hear from a family first hand that they felt that the “Liverpool care pathway” didn’t serve their loved one in an end of life situation!
I am not surprised by this at all.
The “Liverpool care pathway” puts indeed budgets above people.
The “Liverpool care pathway” is another vehicle where I have seen families being “sold” on a “withdrawal of treatment” as being “in the best interest” of their critically ill loved one.
It’s highly questionable and for example, I am a strong advocate that even for Intensive Care Patients they should be given a choice of where to die(I.e. home care even for ICU Patients www.intensivecareathome.com.au )and the “Liverpool care pathway” doesn’t give Patients and Families that choice.
It’s a “one size fits all” package that doesn’t take into consideration that we are dealing with people(Patients and their Families) who are in an extremely vulnerable situation.
Therefore a “one size fits all” highly questionable care plan isn’t going to cut the mustard so to speak.
The “Liverpool care pathway” is a pathway that is moulded around the needs of an Intensive Care Unit or a general hospital ward, where the power play, the dynamics, the politics, the competing interests, the intrigue, the psychology and the hidden agenda in Intensive Care is often by far more important than the individual’s needs.
Thank you once again for your detailed description of the events and I am really looking forward to do a follow up interview, when you and your Family are ready!
I hope it’s all going well from now on!
Speak soon.
Thank you& Kind Regards
Patrik Hutzel
How can you have PEACE OF MIND, control, power and influence whilst your loved one is critically ill in Intensive Care?
- You get to that all important feeling of 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 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 “killer” tips& strategies helping you to get on the right path to 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 “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!
Also check out our Products section where you get more Ebooks, Videos and Audio recordings and where you can also get 1:1 consulting!
This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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