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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!
This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another question in this series of questions from my client Steve and the question last week was PART 1 of
You can check out last week’s episode by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to answer another question from one of my clients Steve, which are excerpts from phone and email counselling and consulting sessions with me and the question this week is
My 73 year old Mom had a stroke and is intubated in Intensive Care. She can’t come off the ventilator and the breathing tube, can she have a tracheostomy and go home and have INTENSIVE CARE AT HOME? (PART 2)
Steve continues with his mother’s situation below
Hi Patrik,
So given that the ICU doctors don’t want to do a tracheostomy for my Mum I want her to get into another hospital and into another ICU, changing from public ICU to private ICU.
One hospital said no to taking my mother and after I found out, I raced down to the hospital and we had a meeting. I outlined my concerns about all the negative questions directed to my mum and how it was distressing her etc…, and that we wanted her moved and that we still don’t understand why she hasn’t been given a tracheostomy.
Anyway, so we had a meeting, he said he called the Director of ICU at xxxxxxx Hospital and he said no because she is a long- term ventilator patient, then he said it’s the same specialists there anyway so it would be the same care. That’s all he really had to say about that.
I found him slightly more pleasant to deal with than his predecessors, but nevertheless he still echoed the same sentiments.
He said he would try to arrange the second opinion, and that he was going to contact the Respiratory Support Service at xxxxxxxxxx Hospital, although he said that they probably would not take her due to her age. But he said he’d speak to them nonetheless.
I’m not really satisfied with his answer about ICU at xxxxxxx hospital so I will call them tomorrow and follow that up.
Other than that not much to report. They will still try to wean her off the ventilator, he still said tracheostomy isn’t in her best interests right now, and he still reiterated her low chance of a good prognosis given that the stroke affected her respiratory centre. I did ask whether he can 100% say that it will never get better, he couldn’t answer that and said he would ask the stroke specialists.
Anyway let me know your thoughts would be much appreciated as always.
Thanks,
Steve
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Hi Steve,
thanks for your update!
I do believe that with everything that’s happening, your mother would be much better off in a private hospital rather than in a public hospital where resources are limited.
Your mother will need time to come off the ventilator and a public hospital is often so stretched for ICU beds that they don’t want to give her the time to wean her off the ventilator and the breathing tube.
It’s been over two weeks now and she needs to have a tracheostomy, period.
If they have tried according to these guidelines here to wean her off the ventilator and it failed, they will need to do a tracheostomy
If they have tried everything to the best of their abilities to get your mother off the ventilator and the breathing tube and she still has high CO2(=Carbondioxide levels) and she doesn’t have the respiratory drive to breathe by herself she needs a tracheostomy, full stop.
You see, the Intensive Care Unit has no interest in investing the physical as well as emotional resources that it takes to get your mother a tracheostomy and buy her time. A tracheostomy often buys people time to recover and even if they can’t fully recover, it gives them the opportunity to prolong life especially if they are wanting to live.
Your mother has clearly stated she wants to live and you also know that you want her at home with INTENSIVE CARE AT HOME , which makes perfect sense to me.
It would also help the Intensive Care Unit to free up one of their precious, expensive and “in-demand” Intensive Care beds that costs $5,000- $6,000 per bed day.
INTENSIVE CARE AT HOME can be done for ~$2,500 per day and it improves your mother’s quality of life very quickly because she can leave ICU.
The Intensive Care team wants to empty the ICU bed and they want to do it by basically “selling” you and your mother on a “withdrawal of treatment” against your and against your mother’s wishes.
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They argue that your mother won’t have any quality of life in the future, which may or may not be accurate and besides, it’s not up to anyone but your mother and your family to decide what quality of life is acceptable for her.
What’s happening here I have witnessed over and over again in nearly 20 years Intensive Care nursing experience in three different countries, where I also worked as a Nurse Unit Manager for over five years in Intensive Care and it unfolds as follows:
Patient comes to Intensive Care, is critically, is in an induced coma, ventilated and has perceived poor prognosis. The Intensive Care team paints a negative picture and is all “doom and gloom” and the negativity helps them with positioning your mother’s diagnosis and prognosis in a negative light and it helps them with “selling” you on an end of life situation which is often the quickest way to empty their ICU bed that they so desperately need for the next Patients already lined up.
That strategy works for the Intensive Care team with 99% of the families in Intensive Care who don’t make informed decisions, who don’t have peace of mind and neither do they have control, power and influence!
Families in Intensive Care don’t know how to deal with this overwhelming situation and they don’t know how to manage and challenge the negativity and the “doom and gloom”, therefore they often “give in” so to speak.
You are different already and you have learned very quickly that pushing back will give you results and hiring somebody like me for 1:1 counselling and consulting, will give you leverage and tremendous negotiating power!
In your situation and because you are in a big metropolitan city in Australia and because your mother is in a public hospital, the best way forward is to go to a private ICU.
You have already shared that your mother has private health cover, therefore all she needs is a referral to a private ICU and they will take care of her and do the tracheostomy and that’ll give her all options. We have been helping many other Patients in Australia going from public ICU to private ICU in similar situations.
Recovery in Intensive Care after an induced coma and stroke takes time and recovery after a critical illness is a marathon and not a sprint.
Nobody will ever be able to tell you if she can fully recover and how long it’ll take, however only time will tell.
If your Mum’s respiratory centre is affected she will continue to have high CO2(=Carbon dioxide) levels and because of that she may be getting confused. Currently they can control and manage those high CO2(=Carbon dioxide) levels by increasing her pressure support on the ventilator and in the long run she will need a tracheostomy in order to breath adequately.
Your next steps at this stage are to look at these guidelines again
Keep calling private Intensive Care Units and keep negotiating with the Intensive Care team about a tracheostomy, again it’s been over two weeks now and a tracheostomy is way overdue, because taking out the breathing tube and not ventilating her could potentially kill your mother, maybe not instantly but after a few days.
Also, don’t go into any family meetings with the Intensive Care team without knowing about their agenda.
I know you have been in family meetings with the Intensive Care team in the past and I know you have been standing your ground, but if your mother’s situation is stalling and they are adamant of wanting to take the breathing tube out without doing a tracheostomy and in essence kill your mother, you should not engage in any more discussions beyond what your wishes are.
Do not take “no” for an answer.
Here are all the guidelines again when and why to do a tracheostomy
Once your mother has the tracheostomy, she should be able to go home with INTENSIVE CARE AT HOME and she can recover at home and even if your mother is approaching her end of life, she’ll still be so much better off at home.
I hope that helps for now Steve. Keep asking for what you want and don’t take “no” for an answer!
Keep encouraging your mother to fight, because it looks like that’s what she wants for now!
Speak tomorrow!
Kind Regards
Patrik
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?
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Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode 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!