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 from our readers and the question was
You can check out last week’s question by clicking on the link here.
In this episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my readers Craig and Craig asks, my mom is in intensive care with Covid- 19, she’s on a ventilator with a breathing tube.
The Intensive Care Team Wants To Do a One-Way Extubation and Let Her Die. What Do I Need To Do To Save Her Life?
So let’s look at what Craig writes in.
I need help. My mom is 76 and has been on a ventilator for over three weeks with a COVID-19 infection. I am locked out of intensive care and I can’t visit her. The ICU has brought ventilator settings down and she’s breathing on her own now for two days. She has passed the pressure test. The ICU spent the day reducing her sedation for four hours and tried to wake my mother up with a breathing tube in place. The ICU told me that she was in a great deal of pain, but didn’t open her eyes and wasn’t able to communicate or follow commands. The ICU doctor said that my mother was in such pain, they had to end the spontaneous breathing test. The ICU doctor told me they believe it is cruel to do a new spontaneous breathing test.
The ICU doctor wants to have a telephone conference with her and palliative care team tomorrow and myself and I have to be strong. I want them to make more than one attempt, maybe four to seven more attempts after three weeks.
My mother’s blood pressure is 115 to 135 systolic over 50. The ICU is also saying she is in multiple organ failure. From my perspective, the heart appears undamaged, the lungs are vented now, and the kidneys are stable. The fluid going in is 2,400 mls per day and 500 mls out, so my mother has edema and third spacing fluid accumulation.
My mother’s kidney function was 10 mls to 20 mls an hour before in the first week and now she’s up to over 500 mls. The blood has not been taken as often as before the ICU is calling it comfort care, blood work, not daily labs. The Creatinine level is 7 last week, BUN was 118 and GFR was less than 5.
I don’t know what to do. Should I push for more spontaneous breathing tests? Also, my mother has an advanced care directive and wants everything to be done. I feel like at the age of 76, it’s not good enough what the ICU team is offering and I’m also concerned that with the current COVID-19 crisis, the ICU has pushed for beds and one way for them to empty their beds is let my mother die. What should I do?
Thank you so much for being a client and thank you so much for writing in and we have been on the phone as well and so I know your situation firsthand. Let me start with this and address a much bigger issue here before we break everything down for you, Craig.
ICU’s are busy all year round. Most ICU beds are occupied all year round and there’s almost not a single day around the year where ICU’s aren’t pushed for beds. They’re busy, and they’re pretty much working at capacity all year round.
Now with current COVID-19 with a current COVID-19 situation with the current pandemic, ICU beds are in even higher demand and that puts even more pressure on ICU. So one way for ICU’s to manage beds, staff, equipment and other resources is simply by not prolonging treatment, whereas, during other times maybe they would continue treatment because they’re not too pushed for beds.
Yes, they’re often pushed, but you know, sometimes, outside of the COVID-19 situation, there is a little bit more leeway. But if you have followed my blog for any length of time, you would know that ICU’s are pushed for beds all year round, but the current situation is just making it worse. So your assumption that the ICU team doesn’t want to give their all to get your mom out of ICU alive is accurate.
The other added on complexity at the moment is that most ICU have locked out families, and again, if you have followed my blog and if you have followed what I’m talking about for any length of time, you would know that even if families can enter ICU’s, it’s very difficult for them to get any, to make any informed decisions, get peace of mind, control, power, and influence, even if they can be physically there because they simply don’t know what they don’t know.
They don’t know what to look for. They don’t know what questions they need to ask, and they don’t know how to manage doctors and nurses because there are ways managing doctors and nurses in intensive care to get the outcomes that you want. So at the moment, this issue is heightened because you are not allowed to visit.
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So, but let’s break this down for you Craig so you understand what needs to happen for your mom next? So, the first thing that you need to understand is I am surprised that you haven’t mentioned a tracheostomy and I know when we spoke on the phone you have told me that the ICU’s has not talked about a tracheostomy, which is also telling me they’re not open and transparent with you.
One thing that would definitely prolong your mom’s life is doing a tracheostomy, but they haven’t even suggested that to you, which again, is telling me that they’re not open and transparent with you and it’s also telling me that, you know, again, the biggest challenge for families in intensive care is that they don’t know what they don’t know.
The devil is in the detail. You not knowing about a tracheostomy is potentially putting your mom’s life at risk and she could die because you don’t know because you are the one that needs to suggest sometimes as well, but that’s what I’m here for, of course, to point you in the right direction so that you know, what treatment options are available quickly talking about a tracheostomy when somebody is ventilated for over 10 days, 14 days, and they can’t come off of ventilator they need to have a tracheostomy to let them wean off the ventilator in their own time.
So, the spontaneous breathing tests have been failed many times now, but then the next step is not to do another spontaneous breathing test, maybe one more, but the next step is to simply do a tracheostomy and once a tracheostomy has been done your mom can come off sedation.
She can come out of the induced coma, right? And that makes it so much easier to get off the ventilator. You are talking about that your mom has been ready in recent days to come off the ventilator. She was breathing with good tidal volumes, minute volumes, her arterial blood gases were good, she had minimal secretions, she was obeying commands, and she had a good, strong cough. You were telling me all of that, Craig.
But then the question is why didn’t they act on it then? You know, that’s again, sometimes you need to be the one driving it. Most families, 99% of families in intensive care don’t believe they can drive it but they can with help from us for example. Where we can challenge the intensive care team on a clinic level, something families can’t do because again, you simply don’t know what you don’t know.
Intensive care is such a highly specialized area. When somebody is in intensive care, critically ill, there’s 10, 20, 30, 40, 50 things happening simultaneously and they are all important to understand and assess a patient and only then can you make an informed decision, right? And that’s where, again, if you don’t know what you’re looking for, it’ll be very hard for you to drive any improvement for your mom and it’ll be very hard for you to challenge the intensive care team anyway.
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So, you said that she was wasn’t in pain a few days ago, but now she is in pain. Again, that breathing tube should have come out a couple of days ago. You couldn’t find out why it didn’t happen, but now the next step is to do a tracheostomy. That is the very next step and the ICU team hasn’t suggested that to you because they simply don’t want to invest the time, the resources, the effort, and also the emotional investment to do what it takes to get your mom off the ventilator and they haven’t even taken the time to inform you about a tracheostomy.
But again, we have so many articles, and video blogs about tracheostomy, when to do a tracheostomy, what it’s there for you, and so forth, but a tracheostomy for your mom is the next step and then she can be weaned off the ventilator in her own time.
The other question that you need to ask Craig is as I mentioned before, a tracheostomy should be done after 10 to 14 days. Now you’re telling me your mom was on sedation for over three weeks. You mentioned initially she was on Propofol then she went on to Midazolam or Versed, so the longer somebody on sedation and in an induced coma, the more difficult it is to wake up after an induced coma.
So again, that’s why I said a tracheostomy should have been done after 10 to 14 days. No more needs for sedation after a tracheostomy has been done. Which means your mom could have by now potentially be off the ventilator. If she had the tracheostomy again, the biggest challenge for families in intensive care is that you don’t know what you don’t know. I’ve seen this hundreds of times, probably thousands of times, those situations, after I have worked in intensive care for 20 years.
So, it’s bread and butter for anybody working in intensive care to do a tracheostomy after 10 to 14 days and then wean a patient off the ventilator. It’s so much easier because again, tracheostomy eliminates the need for sedation and induced coma, and then your mother can have physical therapy. She can sit out of bed. She’s just so much more flexible, so that would have been so much easier. Anyway, it’s not too late of course, the next step is for us to advocate for a tracheostomy.
And then also if pain is an issue, okay. The question is, where is the pain coming from? What needs to happen to manage the pain? She shouldn’t have necessarily opiates like Morphine or Fentanyl to control the pain because Morphine or Fentanyl, the main side effect of Morphine or Fentanyl is respiratory depression, which makes it even harder for your mom to come off the ventilator.
So they need to look at other, maybe less potent pain medication to manage the pain. Maybe Panadol, maybe a little bit of Endone, which is morphine based as well but something may be in between little bit stronger than Panadol or Paracetamol and not quite as strong as Morphine or Fentanyl. So again, those are the issues that haven’t been looked at by the sounds of things.
The ICU team is telling you that apparently it is “cruel to do most spontaneous breathing tests for your mom”. Again, that is their frame of mind. We need to push back on the advanced care directive. The advanced care directive of your mom says that she wants everything done which means there is no indication that your mom wants to die. She has made her visions very clear.
The ICU team wants to move towards a withdrawal of treatment and again they can’t do that without your consent. And they can’t do that without following their own policies and procedures, which means they are not allowed to just withdraw treatment without your consent. That’s killing someone that is murder, right?
So you always gotta be aware that the ICU team is not operating in a vacuum. They can’t make decisions in a vacuum life or death decisions in a vacuum, even though that’s what they’re implying because that’s how they’re running ICU’s. They’re always implying that they can make life or death decisions in a vacuum, but that is not accurate. And again, the biggest challenge here as well is that families in intensive care don’t know what they don’t know. They don’t know what questions they need to ask. They don’t know how to exercise their rights because you do have rights.
You are saying that the ICU team thinks it’s cruel to do another spontaneous breathing test. Well, what is cruel is to kill your mom. Do a one way extubation, remove the breathing tube not put it back in that will kill your mother and that is cruel.
So you’re also talking about that her blood pressure is stable, 115 to 130 systolic with the diastolic blood pressure, 50 without vasopressors or inotropes. So that’s good. That means your mom’s heart is strong. Doesn’t look like she’s septic which also means, it looks like she’s overcome the COVID-19. Well, maybe not quite yet, but if she doesn’t, if she’s not on vasopressors or inotropes, it’s a good sign that she is not septic and that she’s overcoming the infection.
Now you’re also talking about that the intensive care team says she’s in multi-organ failure and again, thank you for sharing all the information, because again, that is not accurate. Heart is strong. Yes, the lungs are impaired still, but you know, there are ways of moving forward with that with a tracheostomy.
Again, they’re telling you that she’s in lung failure and that she can’t come off the ventilator, but they’re leaving out that she needs a tracheostomy as a next step.
So they’re leaving crucial and also life-saving information out of the picture, right? And if you don’t know what questions you need to ask, you will never get the full picture. You will never get all the treatment options that are available for your mom. Because again, the ICU at the moment and during other times as well, is trying to manage the intensive care beds.
They need more beds because they have more patients queuing up for those beds, unfortunately, but you need to be aware of those dynamics. So that you can get the outcomes that you want need and deserve for your mom. Going back to your mom’s advanced care directive, which states she wants everything to be done, and she wants to live.
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Now, you talked about fluid balance and it is concerning that your mother’s fluid balance in the last 24 hours has been plus 1900 mls, no wonder she is edematous and no wonder she is third spacing and she has a lot of fluids accumulated in her tissues. Now with that being said one of the biggest challenges when in kidney failure is fluid accumulation in the lungs, which again is particularly challenging when somebody needs to be weaned off the ventilator. And it could also be why your mom had setbacks in the last few days because she had, fluid overload, pulmonary edema and couldn’t come off the ventilator or can’t come off the ventilator because of that.
Now, what is important now is Creatinine is 7 too high, BUN is 118 too high, GFR is less than 5 too low, which means she’s in acute kidney failure.
Now, I don’t know whether they’ve tried Lasix or Furosemide as a diuretic to wash out or to get the kidneys started and the next step clearly is in this situation to start her on dialysis. And she has a very good chance to tolerate the dialysis, especially since she’s not on inotropes or vasopressors, right. Once dialysis is started and she can have fluids removed then hopefully she can offload fluids of the lungs, have the tracheostomy, and then come off the ventilator.
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So you see there is room for improvement. You just need to ask the right questions and you just gotta keep pushing back to the ICU. ICU teams always treat families in intensive care if they’re stupid, right. They always assume that they don’t know anything and that they can just tell them whatever they like. And they do that. If you don’t question, so the situation that you’re in is you haven’t asked the questions early enough, but now thankfully we can ask the questions and now thankfully we can move the situation forward and help your mom to get a tracheostomy and then come off the ventilator in her own time. And even if she can’t come off the ventilator, you could look at services like intensive care at home.
You can check out intensivecareathome.com for more information there and then go from there. So Craig, that’s the next step we need to talk to the ICU team next, suggest tracheostomy, reiterate your mom’s advanced care directive, which is she wants to have everything done. If they don’t do everything in essence, that’s murder, right? And you’ve got to more or less wrap that into the ICU team’s face, because again, you have rights and you need to exercise those rights.
Well, thank you for watching and thank you again, Craig, for being a client.
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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- 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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- How you need to manage doctors and nurses in Intensive Care (it’s not what you think)
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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