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
How Long Will it Take For My Loved One To Recover After Being on ECMO in the 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 family meetings in intensive care, avoiding the pitfalls and how to be in control.
Family Meetings in Intensive Care, Avoiding the Pitfalls and How to Be in Control! Live stream!
Good afternoon, good evening, good morning, wherever you are. Welcome to another live stream for intensive care hotline. My name is Patrik Hutzel from intensivecarehotline.com, and I want to welcome you to this live stream.
And today’s topic is about family meetings in intensive care, how to avoid the pitfalls, and how to be in control. It is one of my absolute favorite topics when it comes to advocacy and consulting for families in intensive care, because there’s so much in it. There’s so many pitfalls. There’s so many things you can avoid in the
first place. I will share some strategies with you, if you do go to those meetings, how you can conduct yourselves in those meetings and get outcomes that you want for your loved ones.
So what makes me qualified to talk about this topic? I have worked in intensive care for over 20 years. Out of those 20 years, I have worked as a nurse unit manager in intensive care for over five years. I’ve worked in three different countries. I’ve also worked, and still work, in the intensive care at home space. So a lot of the
advocacy that we are doing is also time right in with getting patients out of intensive care, to Intensive Care at Home, giving patients choice and giving patients quality of life, but also giving intensive care units choice too.
So I also want to apologize quickly for the delay. I had this live stream scheduled for 8:00 PM Eastern standard time, but something had come up and actually, I was talking to a client a minute ago, where I hope we saved a client from having life support withdrawn in intensive care against family’s wishes, without family consent. It
was a typical situation that probably could have been avoided in the first place if the family had contacted me much earlier, but let’s dive right into the topic today.
So family meetings in intensive care, again, it’s one of my favorite topics because I’ve probably been in hundreds of them, either as a critical care nurse when I was working in ICU, or also as a nurse unit manager, and also I have been in probably hundreds of family meetings over the phone with clients that we are consulting and
advocating for all over the world. So it is one of my favorite topics.
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And here is my first tip when it comes to family meetings. So many families hear from intensive care teams, “oh, can we please have a family meeting and can we do it now, or can we do it tomorrow at 10 o’clock”, however they are approaching it. So if that is the case, your alarm bells need to go off straightaway. So 9 times out of
10, when the intensive care team is asking for a family meeting, they want to give you bad news, and they wouldn’t do it necessarily at the bedside. They’d want to do it in a more formalized way. They often have, the lead doctor is there, one of the registrars might be there, a social worker might be there, and usually the nurse in charge or the bedside nurse might be there, and they also want to have potentially, key family members there.
And if they are giving you good news, they’re usually doing that at the bedside. It doesn’t require a formal family meeting. Good news can be dealt with fairly quickly, efficiently and easily, whereas getting into a room, into a family meeting is a formal process. Often someone is also taking notes, or if they’re not taking notes at
the meeting directly, they will be writing in the medical notes later. So that’s sort of the process.
Now, what is important for you to know, is that when intensive care teams ask for a family meeting, they know what to say, they know what not to say, they know how to say it, they know when to say it, and they know how to manage your emotions. They know that. They’re the master at it. When intensive care teams go into a family
meetings or ask for a family meeting, they have a clear-cut agenda. Nine times out of 10, intensive care teams have the agenda to empty their ICU bed. Nine times out of ten when you’ve been asked for a family meeting, your loved one is meeting the intensive care team’s worst case scenario.
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What’s the intensive care team’s worst case scenario? It is to look after a patient, a critically ill patient indefinitely with an uncertain outcome. And if that is the case, they often frame it in a way where they say, care and treatment for your loved one is futile. Futile means it’s of no benefit, and I say, perceived futility,
it’s a perception, as well as of no perceived benefit. In your eyes, there could be a perceived benefit. So it all comes down from which perspective you’re looking at. It also comes down to your beliefs. Are you a spiritual person? Are you a religious person? What are your cultural beliefs? Just because, from a medical point of view, it might be perceived as futile, from your religious, spiritual, cultural point of view, it might be perceived as beneficial. It all comes down to your
perspective.
So my first advice here is this, if you’ve been asked to go to a family meeting, the first thing you need to do is ask for a written agenda. Ask for a written agenda, get that agenda in writing, and then see whether you want to attend the family meeting. It’s your choice, not the intensive care team’s choice. It’s your choice if you
want to attend a family meeting or not. If you don’t want to attend, intensive care team has duty of care to keep treating your loved one to the best of their abilities. If you do want to go out to a family meeting, you can do so, but make sure you have all your ducks in a row, because the intensive care team will have their ducks in a row. They’re doing family meetings 365 days of the year, and again, they know what to say, they know how to say it, they know when to say it, and they know what
not to say, and they will play your emotions like some people will play the piano if you are not careful.
There is a huge factor in the psychology of those family meetings, and I’ll give you a tangible example here. So when people are in intensive care, families feel grateful, and of course they do. And as much as I’m all for family advocacy and as much as I’m pulling the curtains for what’s really happening in intensive care behind the
scenes, I’m also well aware that there’s a lot of good things happening in intensive care. The work that we are doing here is mainly about where families feel they’re not getting everything they should be getting.
So we are dealing with the minority of patients here, but you need to be aware of the pitfalls, but where I’m going with this is, you feel gratitude for what the intensive care is doing for your loved one. You feel a sense of gratitude, of course you do, because at the end of the day, whatever the reason is for your loved one going
into intensive care, the intensive care team has saved their life, for now, and you feel gratitude because of that. But what you need to be careful of is that, because you’re feeling gratitude that the intensive care team is not using that gratitude that you are feeling, to get the outcomes that they want.
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So to make this tangible, if the intensive care team is suggesting in a family meeting to stop life support, to withdraw life support, or if they’re suggesting that you sign a DNR. If that is the case, you might say yes to all of that, without knowing and understanding the implications and you might say yes, because you’re feeling
gratitude, because you’re thankful to the intensive care team. Well, just because they saved your loved one’s life yesterday, doesn’t mean they should stop doing that today. It means they should be continuing. So those are very dangerous dynamics at play, because your sense of gratitude that you’re feeling towards the team makes you weak, to give into the wishes of the intensive care team.
I’ll give you another example. As I mentioned, I’ve just come off a call to a client, just literally before I started this live stream, and on the call, the family has their 77-year-old dad in ICU. They’ve been having meetings all week with the intensive care team, and the intensive care team has been, “preparing” the family for end
of life and has been preparing the family to withdraw life support for their loved one, and the family did not think that they have any rights whatsoever. They were pretty much nodding off their head and saying, yep, do whatever you like, and then they realize, well, if they agree to everything the intensive care team wants to do, their loved one is going to die. And then they had a last minute second thoughts and that’s when they reached out to us. And I believe we were able to put a stop to
the intensive care team withdrawing life support, because again, we understand intensive care inside out, and we know about patients and families’ rights and intensive care teams are not operating in a vacuum, they’re not.
And in those family meetings, to bring it back to the family meeting, they will always tell you that they can do whatever they want. Nothing could be further from the truth, and they’re trying to present it to you, that they will seek agreements from you or that they will seek consent in the ideal scenario, and if they can’t achieve
the ideal scenario where they can’t get your consent, they will try and bully those ahead and potentially kill your loved one and withdraw life support, because they will be telling you that it’s, “in the best interest” for your loved one. Well, how can death be, “in the best interest” for your loved one, and if death is unavoidable, how can that be achieved without your consent? It should be an end-of-life situation on your terms, and not on their terms. That is very, very important. You want
outcomes on your terms, not on the intensive care teams’ terms. It’s as simple as that. So that’s that.
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Then you also need to keep in mind the dynamics of such an important family meetings. They’re playing on home ground. They are doing what they’ve been doing forever and a day, so they know how to conduct those meetings, and that’s why it’s so important for you to make a conscious decision whether you even want to go to those
meeting
Now, my recommendation is this that if you do go into those meetings, a) get a written agenda, don’t agree to last minute meetings without a written agenda, and have someone in that meeting that speaks the medical language, that understands intensive care inside out, and again, we have been part of many of those meetings and we can
advocate for clients, we can challenge intensive care teams, and we can help you get the outcomes that you want. That is so critically important, but also reserve the right not to go to those meetings. Now that you understand more of the dynamics, please reserve the right to not go to those meetings in the first place. Nobody’s forcing you. I can’t believe how many families that are calling us and they say things like, or the intensive care team tells us, we have to make a decision about this,
and we have to make a decision about that, and we have to agree to this, and we have to agree to that. And nothing could be further from the truth. You don’t have to do anything.
If anything, the intensive care team has to treat your loved one. They have a duty of care. So you need to change your thinking. Intensive care teams just think they can put families under pressure forever and a day, and families just give in and most families do give in unfortunately. Most families give in and the intensive care
team gets their way, and it costs lives. Especially nowadays, with services like Intensive Care at Home. On the other end, there are options to have quality of life at home, or a quality of end of life at home, instead of staying in ICU, or having life support withdrawn and dying. You can go home with services like Intensive Care at
Home instead. Those are the sorts of things the intensive care team isn’t telling you. You need to be educated, and you need to understand your rights and you need to understand all options available to you.
So that’s the situation that you’re finding yourself in. You have rights, and you need to exercise them, and don’t think, just because the intensive care team is asking you for a family meeting that you need to drop everything and that you should just go to those family meetings without being prepared. That’s your worst case
scenario, going into a family meeting without being prepared, because once again, the intensive care team is prepared, and they know how to push your buttons. They know exactly how to push your buttons and they know that you feel gratitude towards them, and they will try and leverage the gratitude you’re feeling for their work, to get you to agree to things that you will probably regret later. If you agree for the intensive care teams to stop life support and have your loved one die, because
you’re feeling gratitude to the work that’s been done to this point, you will regret it bitterly down the line. Once your loved one has gone, they’re gone. They’re gone for good. You can’t turn the tide back.
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So I hope that gives you a good overview of the pitfalls of family meetings in intensive care, I really do. And you can’t go in there without having someone that has worked in intensive care that understands intensive care inside out. You need to be able to break things down for you, especially the medical terms. Someone needs to be
able to challenge the intensive care team on a clinical level and families, generally speaking, can’t do it. So that’s really very important that you do that, that you have me or someone on our team on a family call or in a family meeting, otherwise you’d be fighting an uphill battle.
Type in the chat pad but if you have any questions, please, because I really want to know whether I’m making sense here, or whether you need any other insights, things that I haven’t touched on. But the bottom line is this, you don’t go into family meetings unless you have a written agenda, and unless you have somebody there that
can talk to the doctors on a clinical level, that understands patient and family rights inside out.
So if there are no other questions, I hope that gives you some insights for today.
My name again, is Patrik Hutzel from intensivecarehotline.com. You can even type your questions under this video once it’s gone up on YouTube and I will respond to the questions there.
If you have a loved one in intensive care, go and check out intensivecarehotline.com. Call us on one of the numbers on the top of the website, or send me an email to support@intensivecarehotline.com. I also want you to like this video if you found value in this. Comment below what questions and insights that
you have from this video, and subscribe to my YouTube channel for updates for families in intensive care.
Thank you for watching. Take care for now.
This is Patrik Hutzel from intensivecarehotline.com and I will talk to you in a few days.
