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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 from our readers and the question was
Why Is it Important to Get Access to My Mom’s Medical Records in ICU?
You can check out last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED”, I am here with a live stream today, where I want to answer your questions if you have a loved one in intensive care. And this is one of the most commonly asked questions for families in intensive care and it’s a question that we get all time. And today’s live stream is about, Should You Go into a Family Meeting with the ICU Team when You have a Loved One in ICU? Live Stream!
Should You Go into a Family Meeting with the ICU Team when You have a Loved One in ICU? Live Stream!
Welcome to another livestream of intensivecarehotline.com. My name is Patrik Hutzel, founder and editor of Intensive Care Hotline, and critical care nurse consultant for families in intensive care. Welcome to another intensivecarehotline.com livestream.
Today, I want to talk about, “Should you go to a family meeting with the ICU team when you have a loved one in intensive care?”
Before I go into today’s topic, you might want to find out what makes me qualified to talk about this topic, so here’s a little bit about myself. I am a critical care nurse by background. I have worked in intensive care for over 20 years in three different countries. Out of those 20 years in intensive care, I have worked for over five years as a nurse unit manager in intensive care. I have also worked, and I am still working in Intensive Care at Home. I’m also the founder and director of a company called Intensive Care at Home. We are basically sending intensive care nurses into the home for predominantly long-term intensive care patients, predominantly ventilated with tracheostomy. We have been doing that successfully since 2013.
By the same token, I’m also running a company called intensivecarehotline.com, which is what we’re talking about today, where we have been consulting and advocating for families in intensive care for the last nine years now, since 2013 as well. I’m talking to people all over the world every day with their grievances when they have families in ICU, when they have loved ones in ICU. We are helping them to get outcomes, get results through advocacy and consulting by giving our insights and our expertise.
Now, some housekeeping issues. Please type your questions into the chat pad. Keep them to today’s topic if you can. If you have questions that are not related to today’s topic…
If you have any questions that are not related to today’s topic, please type them in at the end. There’s also the opportunity for you to call in live. After I’ve talked about today’s topic, I’ll give you the phone numbers that you can call into the show, live.
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Let’s dive into today’s topic, “Should you go into a family meeting when you have a loved one in intensive care?” Let’s set the scene here. I’ve been in hundreds of family meetings throughout my career in ICU, whether in ICU directly or whether as a consultant or advocate for families in intensive care. I’ve been sitting in many meeting rooms with families, with ICU doctors, with ICU nurses, with social workers, other specialists and so forth. I have also been in probably hundreds of family meetings over the phone or on Skype or on Zoom with my clients here at intensivecarehotline.com and advocating for them.
Here is a common scenario that I encounter in my day-to-day practice at intensivecarehotline.com, but also a common practice that I’ve encountered in the years that I’ve worked in ICU. We get many phone calls where a prospective client calls us and says, “Hey, my dad’s in ICU. He’s had a stroke, he’s been ventilated for two weeks, and they’ve asked me for a family meeting tomorrow at three o’clock. What should I do? And what questions should we be asking?”
So, here’s the first question you should be asking, should you even go? Should you even go to the family meeting? My answer is it depends. Nine times out of 10, the family meeting is constructed by intensive care teams in a way to put pressure on you and to deliver bad news. I can assure you, nine times out of 10, from my experience, a family meeting is to deliver bad news. If they have good news, it could just be mentioned casually.
Family meetings are also often framed as, “We need to have a family meeting tomorrow at three o’clock to make a decision.” And that decision is often only in the best interest of the ICU team. It’s often not in the best interest of your loved one. So, another scenario that we find all the time is, and again I’ve seen it in ICU over and over again, “We need to have a family meeting tomorrow at three o’clock. You have to decide whether you want to stop life support or whether you want to do a tracheostomy.” That’s a very common scenario, a very common scenario. It’s all constructed in a way to put pressure on families, so you have to make a decision. Do you? Do you have to make a decision? Who says that?
Just to come to your question, Jose, “Why are the doctors always so negative ?” Those family meetings are negative from the start. Why are they so negative? They are negative because they’re trying to avoid their worst-case scenario. What’s their worst-case scenario? The worst-case scenario is to look after a patient in intensive care indefinitely with an uncertain outcome. That is their worst-case scenario. Many patients in intensive care fit that scenario.
Why are they negative? They’re negative because if they came to you, Jose, or to anyone and said, “Hey Jose, we’ll look after your dad for a couple of weeks, and then he’ll walk out of ICU,” and it wasn’t true, you could take them to court. So, you always have to read between the lines. Why are they negative? They’re not negative because they’re negative by… They might be negative by default. They are negative by default as part of their profession because for them it’s risk management. Under promising and overdelivering that’s their ideal scenario. If they overpromise and underdelivered, you could sue them. So, you got to see it in that context. That’s why they’re negative.
Another reason why they’re negative is intensive care teams have no idea what’s happening outside of ICU. They only micromanage intensive care, and they’re very good at it. But for example, just speaking what I’m doing, I see what’s actually happening outside of ICU as well, we look after long-term intensive care patients at home very successfully. Whereas, if you look at intensive care teams, they just see all the critical illnesses in ICU, so they’re isolated to that high acuity. They are exposed to that high acuity, and they don’t see what happens on the other side. That’s why they often want to stop treatment and say, “It’s in the best interest” for a patient to stop treatment.” Because they don’t know what’s happening on the other side.
Now, bigger picture, over 90% of intensive care patients survive intensive care. So, that’s what they’re not telling you. They approach it in a way that many patients die in ICU, many patients do die in ICU, but it’s only 10% roughly. The overwhelming majority of people survive in ICU. You got to see it in that context.
But coming back to the family meetings, should you be even going to a family meeting? My advice is this: get a written agenda of the family meeting. Well, in any other endeavor in life, if there’s a business meeting or any meeting, you have an agenda. ICUs are very good, they’re just ringing you up and they say, “Oh yeah, come in tomorrow at one o’clock. We have to do a family meeting. You have to make a decision.” Unless you’re going there prepared, they will walk all over you. They know what to say. They know how to say it. They know when to say it. And they know what information to withhold.
And unless you’re going in there and you are prepared for everything that comes your way, and this is exactly where we can help you with here at intensivecarehotline.com, because we’ve been in those meetings, we know what’s to come. Those meetings are designed to push intensive care agendas. They’re not designed to push your agendas. I’ll give you a very practical example.
Last year, we were working with a family who had their 46-year-old sister in ICU after COVID, COVID pneumonia. She had a long-standing underlying pre-medical condition with lupus. Her lungs were compromised even before COVID, and she ended up with COVID pneumonia. The ICU team was adamant to stop treatment because she won’t have any quality of life in the future if she does survive. They were ready to remove the ventilator and let her die. We successfully intervened in those family meetings by asking the right questions.
Intensive care teams only tell you half of the story unless you ask the right questions. The devil is in the detail in intensive care. Unless you know every little thing that can happen in intensive care and unless you know what do certain medications mean for outcomes for patients, how does it all… It’s like a puzzle. You got to look at the ventilator. You got to look at the medications. You got to look at blood gases. You got to look at the full picture to make an informed decision. And if you go in any of those family meetings unprepared or without clinical representation, you’ll be fighting an uphill battle. They will do whatever they like because you’re unprepared.
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So, in those family meetings, they will tell you all the doom and gloom, and they will tell you that if your loved one does survive, they will end up in a nursing home and they will be dependent on care for the rest of their life. That might be the case in some situations, but is that acceptable for you? Is that acceptable for your loved one? Those are the questions you need to ask. It’s not so much what do they want, what do they think about your loved one’s outcome. Their job is to make sure they’re getting to the other side. That’s their job. If you’re not going to a family meeting tomorrow and they’re not giving you a written agenda prior to a family meeting, you have to ask yourself, “Why is that?” Again, any business meeting, you get an agenda so that you can prepare. Why can’t ICU give you an agenda when it’s life and death? Ever thought about that?
My recommendation here clearly is that (A), do not play that game and say, “Look, I can’t make three o’clock tomorrow, but I can make the next day at 10:00,” whatever you come up with. I would also strongly recommend before you go into any family meeting, request the medical record. Request the medical records. Very important. You need to get as much information as possible. If you can’t get the information, what’s the point? What’s the point? Otherwise, you’ll be dependent on exclusive information from the ICU team. You can’t verify whether what they’re telling you is true or not. You got to keep in mind, they have to manage beds, they have to manage access to ICUs, and you got to see everything in that context. You got to see it in context of money. You have to see it in context of bed management. You have to see it in context that if your loved one does survive ICU and they leave ICU, how long will they stay on a hospital ward or somewhere else? You got to see it in that context.
And you got to see it in the context that intensive care teams are… They’re desensitized. They tell you that it’s “in the best interest” of someone to die. They’re telling you that because they’re desensitized. There’s many people dying in ICU, and therefore, they are desensitized. For them, it’s just another life gone. For you, it’s your mom. For you, it’s your dad. For you, it’s your spouse, someone that you dearly love. So, you got to see it in that context.
But in order to manage those dynamics, you got to put the brakes on, and you got to say, “Yep, happy to come to a meeting. Give me a written agenda.” And what makes you jump through the hoops in terms of if ICU calls you at two o’clock in the afternoon and says, “Hey, we got to have a meeting tomorrow at three o’clock because you have to make a decision.” Do you? Why not wait and see to see if treatment can achieve the outcomes that you want. Because often what happens in ICU is well, you have to make a decision whether you want a tracheostomy or whether you want to “pull the plug.” Well, maybe your loved one may just need a few more days and then they can come off the ventilator without a tracheostomy. But you wouldn’t know that unless you ask all the right questions, unless you have someone that can represent you on a clinical level. So, those are all the questions that you need to ask.
Those meetings that I’ve been in, they’re all the same all over the world. They’re all the same. It’s about options, but it’s also about withholding information. It’s sometimes about misinformation. It’s only telling families half of the story. And unless you can ask the right questions and unless you have someone representing you, you’ll be fighting a losing battle.
Now, I don’t know whether there are any questions. You can type them in your chat pad, or you can also call in live on the show if you want to. If you’re in the U.S., you can call me on 415-915-0090. That is for our U.S. viewers, 415-915-0090. You can get call me live on the show here. For our U.K. viewers, you can call me live on the show on 0118-324-3018. And for our Australian and New Zealand viewers, you can call me on 041-094-2230. That is again 041-094-2230.
Now, Jose, you are asking, “Dad had a stroke. Doctor says it’s best not to wean him off the ventilator even though he mentioned ventilator associated pneumonia.” It really depends. Jose, I don’t know enough about your dad’s situation. I know we’ve spoken on the phone a while ago. Even though he mentioned that I really don’t know why the doctor says to your dad not to wean him off the ventilator. I would need to know more. I would need to probably talk to the doctor. I would need to look at medical records to find out why they’re suggesting not to wean him off the ventilator. Doesn’t make a lot of sense to me not to wean someone off a ventilator.
I’m wondering here, do they not want to wean him off the ventilator because do they want to earn some money? I really don’t know. I couldn’t tell you without having more clinical information. Couldn’t tell you. Anyone on a ventilator for longer than necessary is a risk not only for ventilator associated pneumonia, it’s a risk for… I assume your dad has a tracheostomy because I know we’ve spoken a while ago, and I would imagine if he’s still ventilated that by now, he would’ve a tracheostomy. But not weaning someone off a ventilator, unless they have, for example, a spinal injury or a neuromuscular disease, I’d be surprised. What would be the benefit of that, not to wean your dad off the ventilator? I just can’t see any benefit there.
He might need a tracheostomy because I know he’s got a stroke. So, he might need a tracheostomy because he might be unable to swallow. Again, I don’t know enough about your dad’s situation. There are people leaving after ICU with a tracheostomy after a stroke that don’t need ventilation, but they need a tracheostomy because they’re unable to swallow. And if they’re unable to swallow, they still need a tracheostomy to protect the airway and to prevent aspiration.
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So, you are saying, Jose, your dad still has a tracheostomy. Has he had any time off the ventilator at all? Do you know, Jose, if your dad has had even only five minutes off the ventilator, do you know that?
While I’m waiting for your answer, when you go into a family meeting, also you need to know who’s there. I’ll give you another example. Let’s just say the ICU team wants to have a family meeting and says to you, “Look, you need to make a decision about whether your last one should have a tracheostomy or whether you want “pull the plug”. You would definitely want to know who’s there. For example, is palliative care there. Palliative care often deals with end of life. So, you absolutely want to know as part of the written agenda before a family meeting, who will be there in the family meeting. And very important, who will represent you, because most families can’t represent themselves because they have no idea what’s coming. And that’s where we can help. I can be there and represent you in the family meeting.
Jose, you’re saying he’s been on CPAP (continuous positive airway pressure). Okay, well, that’s a start. Is he on CPAP all the time? Is he on CPAP, 24 hours a day? Or has he been on the tracheostomy mask as well? Do you know? What I’ve also seen over and over again is ICU’s telling you, “Oh yeah, we have to have a family meeting tomorrow about one o’clock,” and you just go there blindly. And all of a sudden, you’ve got an army of people sitting there from the hospital, ICU team, cardiologists, and palliative care. Palliative care will be telling you in your face that it’s “in the best interest” for your loved one to die. If you’re not prepared for that, you’ll be fighting a losing battle. I can’t warn you enough about those family meetings. They’re designed that ICUs get what they want.
All right, Jose, you’re saying your dad has no mask. Okay. All right. I would love to talk to the doctor there, Jose, to find out why he suggests not to take your dad off the ventilator. There might be a legitimate reason for it, but it just sounds strange to me that they haven’t even tried. “He did good on CPAP for 12 hours, and then other days not so good according to the ICU.” Yeah, okay, why? I would want to know why. Is he getting out of bed? Are they sitting him in a chair? Are they mobilizing him? How often does he need suction? What are his arterial blood gases like? I would want to know more. I would want to know more.
That’s why I keep saying, Jose, the biggest challenge for families in intensive care is that they don’t know what they don’t know. They don’t know what to look for. They don’t know what questions to ask. They don’t know their rights, and they don’t know how to manage doctors and nurses in intensive care. Those are things for you to ponder.
First question to me is, why do they want to keep him ventilated? It does not make any sense to me. Why would they not try and get him off that ventilator?
“Can I you talk about pressure wounds? That has a level four.” Oh, my goodness, I’m so sorry to hear that. It comes back to mobilization, Jose. If he’s not getting mobilized, he will inevitably develop pressure sores. If he’s got a stage four, that’s the worst, that’s a high infection risk. Again, it’s mismanagement by the hospital. It’s a huge infection risk. A stage four pressure sore can kill a person because it can be a huge source for infection. There are people dying from sepsis after a stage four pressure sore.
If he’s got a stage four pressure sore, it means they haven’t done proper nursing care. It means they haven’t done proper pressure area care. It means that they haven’t done their proper nursing care. It’s negligent. There are some patients that you can’t turn when they’re very unstable, that happens. But then if that does happen, then it should be documented that people haven’t been mobilized, they haven’t been turned sometimes for days, and that is definitely a big risk for a pressure sore. But I would think you would know about if that was the case.
Have you had any meetings for, Jose, with the doctors? Have you been sitting in a meeting room with the doctors, eye to eye, face to face? I hope this gives you good insight about how you should prepare. Yeah, you haven’t had a meeting, that’s interesting. I know, Jose, we’ve been in contact for quite some time. I know your dad’s been in ICU now for, I don’t know, maybe two months at least. Why they’re not updating you?
“Face to face, yes, but no scheduled meetings.” Okay. All right. I’ll tell you what you should be doing, and that’s for everyone, you should be going into meetings on your terms. If you want the meeting, you should definitely ask for it. You should definitely ask for it. And if they don’t want to, well again, what do they have to hide? But you should not be forced or coerced by a family meeting on their terms. You should have professional representation. You should have a meeting agenda. You should have one independent person, one advocate for you talk to the doctors before a family meeting, and someone on your team should be reviewing the medical records. Again, these are all things we can help you with, so you are prepared. Otherwise, they will just tell you things that they selected to fit their agenda. That’s my advice. All right.
Jose, do you have, or anyone on this call, are there any other questions? If there are, that’s great. Type them away.
“They transferred him into subacute a week ago.” That’s a concern. That is a concern. I do not advocate for subacutes or LTACs. I strongly advise against them. It’s the better version of a nursing home. You’re going from ICU to a better version of a nursing home. Not a good situation to be in. Not a good situation to be in. He needs to go somewhere where they are experts in weaning off the ventilator and very few places are experts on ventilator weaning. The best place for ventilator weaning is, generally speaking, ICU, because they have all the expertise.
Okay, what other questions are there from our viewers before I’m going to wrap this up and schedule another YouTube Live for next Saturday, 8:30 PM Eastern Time, 5:30 PM Pacific Time, and 10:30 AM Sydney Melbourne time on the Sunday in Australia. So, Saturday night in the U.S., Sunday morning in Australia. It’s in the middle of the night for our U.K. viewers, at 1:30 AM, but you can watch the recording afterwards anyway.
What other questions are there before we wrap up? As I said, you can dial in live on the show as well. I’ll give you the phone numbers quickly again, 415-915-0090 for our U.S. Canadian viewers, U.K., 0118-324-3018, and Australia 041-094-2230.
So, that’s my advice for today.
I do offer one-to-one consulting and advocacy for families in intensive care over the phone, via Skype, via Zoom, via WhatsApp, also via email. I represent families in those meetings, and I get outcomes for you. I get outcomes for you by asking the right questions, by advocating, by knowing about patients’ and families’ rights. ICUs pretend that you don’t have any rights, but you do, you just need to exercise them.
We also have a membership for families in intensive care at intensivecaresupport.org. Go and check that out.
Go to our website intensivecarehotline.com if you have a loved one in intensive care, and you can call us on one of the numbers on the top of the website, just the numbers that I mentioned a minute ago.
If you want a medical record review, you can have that too. Again, you should contact us for that. It’s inevitable for you to have someone look at medical records. It’s inevitable for you to question everything that intensive care teams say, and that you get someone giving you an independent view that works more with your goals, not with the hospital and the ICU team’s goal.
I would also appreciate if you can like this vide, please subscribe to my YouTube channel for updates for families of critically ill patients, where I also do these YouTube Lives every week, subscribe to my YouTube channel, click the notification bell, and comment below what you want to see next.
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I’ve just seen there are a few more viewers at the moment. Are there any other questions before I’m going to wrap this up? I’ll give it a couple more minutes if anyone has any more questions. If not, then I will wrap this up in a couple of minutes, and we’ll schedule another live stream for next Saturday night in the U.S. and Sunday morning Australian time. I presume there are no other questions at the moment.
Thank you for watching.
Please comment below what questions and insights you have and let me know what other topics you want to see on a livestream.
Take care for now.
All the best.
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
- 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
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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 episode 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, have a look at our membership site INTENSIVECARESUPPORT.ORG for families of critically ill Patients in Intensive Care here.
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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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