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Published: Tue, 05/16/23
Hi, it’s Patrik 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!
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Patrik: Hello, and welcome to another intensivecarehotline.com podcast. At Intensive Care Hotline, 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.
Today, I have some very special guests on my podcast. I’ve got a family of four here with Ariana, Jenny, Joseph, and Bernard. Welcome to all of you and thank you so much for joining me on this call. I really appreciate it.
Ariana, you had reached out to me last year, I think it was in January or
February in 2022 that your dad, Joe, was in ICU, and it was a very difficult situation for you, and for your dad. Can you share more about what exactly happened during that time?
Ariana: Yeah, absolutely. That is right. January of last year, we received the unfortunate call that dad had quite a big fall at work, workplace
injuries unfortunately can touch all of us, and as a result of that, had sustained a traumatic brain injury. It was
quite a critical situation at that point in time.
He was rushed to hospital, and that’s where the journey really began in terms of getting him treated initially, which consisted of a craniotomy, a piece of the skull needing to be removed, so the brain could swell if it needed to, because it was quite a big injury.
And then as you said, Patrik, that was the journey into ICU care, intensive critical care, because obviously, he was in quite a bad way, and there were multiple injuries that were sustained in the body, in addition to his head trauma.
Patrik: Okay. Initially, what prognosis did the ICU team share with you? What did that look like from your perspective?
Ariana: Look, it was quite an interesting experience, new to all of us. I’d never had any dealings with the hospital system to that degree. I’d say that the prognosis was quite grim, which when you’re in quite a vulnerable situation like that and it’s your loved one that’s in critical care, there are a lot of, you know, you’re experiencing a lot of emotions.
There’s a lot going on for each member in the family. It was, unfortunately, quite a grim prognosis.
We did hit a situation which was where we initially met. And I did seek you out and was grateful to find that there was a service to support families around advocacy and making informed decisions around somebody’s care. But unfortunately, probably in the span of 24 hours, grim went
to an end-of-life conversation, which was quite a confronting experience for all of us in that moment and brought up a lot of questions in terms of what that meant, what to do next. We were playing with time at that point, and so it’s quite like a pressure cooker situation, I’d say.
Patrik: Especially, it’s a
pressure cooker situation, if you don’t know any better. When families contact us and they say, “Oh, we are dealing with an end-of-life situation”, I straight away say, “Well, are you sure? Most patients in intensive care survive. The statistics say about 90% of patients in intensive care survive.” The first question that I usually have, “Why should your family member be the one out of 10 that doesn’t survive?” It’s really important that families have perspective in situations like that, which I hope I could give you at the time.
I believe that the next thing we talked about then was a tracheostomy, which you had no idea really what it meant, but that could be a way forward. Can you talk more about that?
Ariana: Yeah. Unfortunately, there were some ways I think that it all unfolded that, again,
it was really difficult to feel like you were making an informed decision. I think, collectively, we had a gut feeling that there perhaps was more that could be done and things. We were still quite hopeful that things weren’t as dire as they were looking.
If for anyone else that might find themselves in a situation like this or similar to this that’s listening, it’s
just really taking a breath, and taking some time to see what resources there are around you to really make an informed decision, and not have that as your sole point of information in terms of what you do.
For us at the time, another issue was not being asked around the person’s values, and what’s important for them around being able to advocate for their care.
Obviously, dad for quite a while was in an induced
coma, so not able to advocate for himself. It was this tug of war, really being able to put forward to them that he’s the type of person that would want to pursue everything, every option that’s available in order to sustain his life.
For somebody else, that might be different. But I think it’s important to be able
to honor, for us, it was to be able to honor what that person wants. That’s where, working with you, and being able to have that support and insight, we were able to have a conversation that wasn’t put forward by the hospital, unfortunately, around doing a tracheostomy, which in my opinion, and my lived experience in that moment, I think it really did help dad’s situation, and one of perhaps the biggest turning points to having him sit here with us today, and be able to do this.
Patrik: Do you think that if you had not advocated for your dad, they would’ve terminated life support? I certainly was under that impression, when you first contacted me.
Ariana: Yes.
Patrik: Certainly, I understood the gravity of the situation straight away in terms of having seen this, unfortunately, over and over again that if you don’t step in with your own insights and say, “Hey, hang on a second. What about we do a tracheostomy and
prolong life and give him a chance?” It could have been a very, very sad outcome. It’s really sad to see how intensive care units pressure families, and if they don’t know any better, it simply costs lives.
Ariana: Absolutely. There are, I think, key questions, that it was a big learning curve for us in the moment. But
again, in consultation with you, the conversations like the tracheostomy, being able to clarify whether a do not resuscitate, a DNR as being put on the patient, which hospitals do have a right to do, but they need to inform the family that that’s the case. In our situation, it wasn’t until I asked that that was conveyed forward. It’s these key moments that can really change the trajectory of what’s going to happen next for somebody.
Again, really just around being able to feel like you’re making an informed decision, and advocate for your loved one, because you’d want the best for them or the very best that can happen in that situation. Even if that is an end-of-life conversation, it’s really making sure that that’s the appropriate conversation to have at the time, and that there are other options that are still on
the table.
Patrik: Clearly, given that we are all sitting here today, it wasn’t an appropriate conversation to have. That, to me, is really the take-home message here that, unfortunately, I’m dealing with many, or we as an organization deal with many similar clients, and with very similar situations that you came to
us with. Every time, we’re trying to put the brakes on and say, “Hang on a second, have they done this? Have they done that? Why are they so pushy for end-of-life? What’s the hurry? What is the hurry about end-of-life in an ICU?”
Patrik: Do you remember how many days they had this? How many days into ICU admission, they had that conversation with you?
Ariana: Yeah. Unfortunately, it was for what felt to me the level of injury, and perhaps the time needed to see this really healing. It was, I felt, quite a premature conversation, and it would’ve been maybe even under a week into ICU care, too early, too early to tell.
Patrik: Too early. It’s interesting that you say that from an ICU perspective, having someone there for a week or two can feel very long for the ICU, depending on what they’ve got going on. Do they need beds? Do they have staff? All of the insider insights that I have. But yet for you and for your family a week in ICU is nothing. Why would you give up after a week in
ICU?
Ariana: Yes, absolutely. Anything from coming out of an induced coma, and that sort of other things that needed to happen, it’s important for people to know that everybody’s journey is going to be really unique. I might need 24 hours to come out of an induced coma, you might take 72 hours.
Again, giving the experience, the situation, breathing room, and time, and continuing to monitor and making sure treatment is still ongoing gives the person the very best chance to come out of that situation, and move to the next stage of their recovery.
Yes, when
there, unfortunately, you’re coming into contact with other bureaucratic issues, you start to feel like you’re under a lot of pressure, and that there’s a bit of, perhaps at times, power dynamic. It’s just important to be aware of that, so you can stay in your power to feel that you’ve done what you can to support the person that you care about, and not regret, perhaps, decisions that you felt pressure to make, later on.
Patrik: Yeah. Yeah. You felt that pressure at the time from the ICU?
Ariana: Yeah, I think we all did. I don’t know, Bernie, if you’d want to add anything on that front, but yes, we did. There were several instances
where you get a bit of a gut feeling that something’s not quite right.
Bernard: Yeah, I’ll tend to agree with that. I think one moment that gets to the forefront of my mind is when we all, I think it was initially the first or second meeting, we were called in with the staff there, and them basically
giving us the grim prognosis.
I remember all three of us specifically saying, “Obviously, dad’s not here to advocate for himself. You guys don’t know him on the level that we do, and we think it wouldn’t be just and fair not to give him every fighting opportunity.” We basically put forth the questions, what else can you guys do to help dad besides just saying, “Look,
we don’t think he’ll make it?” Obviously, I guess, that’s not necessarily justified, but it speaks for itself, given that dad’s here now with us. We could have easily just been in the mindset of, “Yep, nothing’s going to happen, let’s just call it, unfortunately, it’s dad’s time.” But it definitely wasn’t, and we definitely had the belief that it wasn’t.
Patrik: That is an important insight. I mean, whilst I could give you the clinical insights, and I say that to families all the time, I say, “What’s your gut telling you? What is your gut telling you?” If your gut was telling you something’s not right here, it’s not our dad’s time, and families need to listen to that, because the clinicians, they look at the clinical side of things and it’s easy for them to say, “Well, this patient won’t make it.” How
can you verify that?
Now, I’ve looked through the case notes that I documented at the time, and there were certainly a lot of things that were speaking against your dad surviving, absolutely. But that’s no reason to give up. That’s what an ICU is there for, and equipped for, to save lives in those situations. When I look at the case notes, I just think, “Yeah, sure.” They
had reason to be pessimistic, but I believe they had absolutely no reason to give up, which is what you had to fight for.
The take-home message here, again, for anyone watching this is the situation might look grim, and that might be a reality in the moment. But then again, if they can’t turn these situations around in ICU, where would they?
Ariana: Exactly. I’d add to that as well, in concert with what Bernie was saying, that making sure that you are reframing that narrative of, “Well, what else can be done? What else can be done?” Asking lots of questions, not being afraid to call a meeting, and a follow-up meeting, if you need to, with the people in-charge of your loved
one’s care, asking to look at data together and asking, “Well, could you explain to me how you are coming to this conclusion, and what are other ways that we could look at this situation right now?” Asking really direct questions. Are you committed to making sure that you are going to maintain treatment for this person, or is there intention to withdraw treatment? Just asking that can really change the power dynamic, and the trajectory of where that decision-making might go.
Patrik: Yeah. Yeah. It also goes to show in this situation, and I say this to families over and over again, and I’ve done countless videos about it, probably. They’re only telling you what they want to tell you, and they’re often only telling you half of the story. ICU is a highly specialized area. Unless you’ve worked in it for a long
time, you’d probably don’t even know what to look for. You don’t even know what questions to ask.
For someone coming into this situation like you did at the time, again, you might have thought, “Oh, well seven days in ICU, that’s actually a long time.” Well, other families might have said, “Oh, yeah. Seven days, that’s actually a long time. Well, if that’s the end of it,
we have to accept that.” But I mean, I’ve seen patients in ICU for months, and yet they recover.
Ariana: Yeah.
Patrik: It’s all about the
narrative. If you let them create that narrative from day one and if you had bought into that narrative, we wouldn’t be sitting here today.
Ariana: I don’t think so. For anyone listening, in our experience, and Patrik, I think it’s absolutely right. If you are prepared to, and it’s about honoring what the
person wants, you could be prepared to be dealing with it for quite a while. For us, it was over a month, so it was quite a long journey, and that’s just the intensive care portion of dad’s recovery. There were further departments then that we had to watch his recovery go through, and other challenges that popped up there.
For those that are able to progress past that, there’s
also rehabilitation. But you’re continuing to try and advocate, and be really, really informed, and making sure you are trying to get, like you said, more of the story, and not just bits and pieces of what might be going on.
Patrik: How did you think, at the time, when you were pushing back, how do you think that was
received by the ICU?
Ariana: Look, there was, I’d say push back initially. But my suggestion would be to push past that because we did notice a bit of a shift in that power dynamic, and a rebalancing of that after maybe at the first or second meeting, and for those of us, I think there were several meetings involved that
we had to figure out what next, and what’s going on. But it did change. I think that they clued on pretty quickly that we were asking lots of questions, and it was not going to work, perhaps, that’s how it might always. It wasn’t perfect, but it certainly became more collaborative than where we started.
Patrik: Yeah. If
you can move from what might be confrontation to collaboration, that would be great for any family watching this. But from memory, Ariana, and when I look through my case notes, once your dad had the tracheostomy, there were still a number of setbacks. It wasn’t smooth sailing from that point onwards, was it?
Ariana: No, no. There were several setbacks in his recovery, and perhaps reflecting back on that now, and I think now I’ve learned that that’s just part of the journey. You really have to be prepared, all that and understand. Just see it as a setback but not as a complete regression, and things heading in, again, that dire situation.
It’s no journey is linear in terms of recovery. There will be setbacks, and they might be the moments where you’re going to unfortunately have to reframe that power dynamic, because it doesn’t stop, in a way. It’s always there in the background, but as long as you are, again, just maintaining that process, and being firm, you can. We moved through those setbacks, and again, he’s here today.
Patrik: Absolutely. Did you feel like, when those setbacks happened, from memory, I don’t think they were trying to push again for withdrawal of life support. What was their response when those setbacks happened? Would you say they were more receptive to what you suggested? Were they more receptive to saying, “Yep, okay, he’s pushed through the first challenges now. He is prepared to…” What was the
response when those setbacks came?
Ariana: Look, they’ve got better and better each time, I think. Thinking back to the different stages, but the ICU, what you have to be aware of in the ICU is that doctors work on rotations, and so part of that is that you’re going to have to be dealing with a new set of people that
might be dipped thinking differently, so it’s being mindful of that as well. That’s a bit of a variability in terms of how they respond. But in general, it did get better as time progressed.
Of course, you’ve got more working in your favor at that point in time, because if a person is not in such a critical situation, they’re showing some kind of improvement over a period of
time. It gets much harder for somebody to argue that end-of-life conversation, as they get a little bit better. Some setbacks are happening, but there’s more evidence stacked in your favor that you can use.
Patrik: Yeah, absolutely. Another thing that was shocking to me at the time was, your dad is very young, and I was
shocked by basically wanting to end the life for someone so young, and you haven’t even tried all options. I was absolutely shocked by that. When I say shocked, again, unfortunately I’ve seen this over and over again, but just this ruthless approach to not give it their best shot, unless you really had to, you really were fighting for it.
Ariana: Sure.
Patrik: The other thing that we spoke about offline, but I think it’s important that we mention here too, is advanced care planning.
Ariana: I’m glad you mentioned that. As you were saying, yes, I think that is one of the biggest things that I would say to anyone. We’ve had multiple conversations about this, and now we’ll have this in place.
I’m in my early thirties, Bernie, equally in his early thirties, and my parents
are in their late fifties, which for me, again, is that sweet spot in life, very young. But I would encourage everybody to take the time, and to spend the money, and it’s really not even that much, to get an advanced medical plan in place, have a will in place.
Unfortunately, dad didn’t have that in place at the time, and had he had that in place, or for anyone that does,
well, that you’re going to start off on a different foot from the beginning, because that becomes a directive for what happens. In that, you can very clearly outline what you wish to happen related to your care.
Patrik: It’s legally binding.
Ariana: Correct.
Patrik: It’s legally binding. There’s no room for negotiation really. The other question-
Ariana: One more thing, if you find yourself in that situation now, and you don’t have one in place, what we had to do that was actually helpful, and the turnaround was quite quick once we got onto that, was getting a power of attorney in place through VCAT (Victorian Civil and Administrative Tribunal).
Patrik: Very important, very important. If you don’t have the power of attorney in place, things could get even more messy.
Ariana: Yes.
Patrik: That’s very important to have that in place. Another question that just comes to my mind now, from memory, the negativity predominantly came from the ICU team. It wasn’t so much the neurosurgeon, or the neurologist at the time. Can you elaborate on whether it was predominantly the ICU team that was negative, or was it the whole specialist team as well? Do you remember that?
Ariana: Look, I’d say, unfortunately, it was a shared sentiment from, I don’t know, Bernie if you recall it differently, but from my memory it was ICU. Initially the prognosis even from the neuro department was quite grim. However, that narrative changed later on, and which was interesting to watch.
Patrik: Yeah. No, that’s great. Because sometimes there can be differences in opinion between ICU, and the specialist teams.
Ariana: Oh,
yeah.
Patrik: I’ve seen that too. That is a dynamic that we advise families to use in their favor, but that wasn’t the case here. But it is a bit of a hint for anyone watching this. There can often be a division in opinion in what the prognosis looks like. From my experience, it’s often ICU that’s more pushy than
the specialists.
Ariana: Sure.
Patrik: Quite frankly, they need the beds.
Ariana: Yep. I thoroughly agree with that. Yeah. For dad, because of the nature of his injury, there were actually quite a number of teams that were consulting any one time, like infectious disease was quite heavily involved right the way through, the neurosurgery team. And then, of course, the ICU care that was top-to-toe of what he needed to recover. And then on any given day, there was a lot
of information flying around, a lot of teams collaborating.
Even in these meetings you have, and if you do call them, you have to be prepared that you might be sitting with a quite team of different people, and so it’s making sure that you are going in there feeling supported, and confident to have, like we said before, a collaborative conversation.
Patrik: Yeah. Yeah. This is another very good point, Ariana. You’re talking about support in those situations, and it’s dreadful for any family. ICUs don’t really offer much support, from my experience. It’s a dreadful situation to be confronted with that potential for end-of-life. They just stated a matter of fact, a family’s whole world could be collapsing. They just state as a matter of fact, “Well, in the next 24 hours, 48 hours, whatever, your family member is going to pass away.” Very
confrontational, matter of fact, no support. It is really a dreadful situation. You can’t possibly prepare yourself for something like that.
Ariana: You can’t.
But I’m hoping that, and really our intention for meeting today, and speaking about any of this is to, for anyone listening, really instill a sense of hope. If you do find yourself learning about this beforehand, or you’re learning it as you go, have that hope.
Yes, you will be sleep-deprived. Yes, your world feels like it’s collapsing. There is a lot of things that make
it difficult for you to think clearly and make the decision that you can best make in that moment, which is really hard to do, because it’s not just one decision. You could be making multiple decisions in the day from, do we do this surgery, do we not do it? Do we put the tracheostomy; do we not dare? It’s an ongoing decision-making situation as well, and it can get very exhausting very quickly.
Patrik: Yeah. I guess, as
much as it’s a cliche what I’m saying now, as long as there’s life, there’s hope.
Ariana: Yeah. Yeah. I don’t know if there’s anything you want to say about that, dad. But we’ve been able to have, like he had the injury when he was 57. He recently had his 58th birthday. We’ve had so much more time together as a
family. Is there anything, dad, you want to say?
Joseph: Okay. All that story is about my very, very bad injury, what happened on my worksite. Unfortunately, all that story, I remember nothing, because I had a very bad injury on my head. The main injury was on my brain. Maybe 80, 90%, I remember nothing from all that
story, because sometimes I talk in some stories what is not familiar for about that injury, or my family, because I think was maybe big mess in my brain. A lot of that stories is something new for me, and unfortunately, I don’t remember much.
Ariana: What do you think now? What do you want to say now?
Joseph: Now, what I have to say is, I have to say a big thank you for all my family and you, because you make big help for my family. That time, when it was critical time for my life, you gave them advice what they had to do. Because what’s happened in that ICU, everything for my family was new, and they didn’t show what they have to
do. When you came, I said again, you gave them advice on what they had to do.
Again, I have to say a big thank you to you, and to my family to do the right things for me to survive, because if my family didn’t do the right things, unfortunately today, I will not be here. Yeah, that’s my story.
Patrik: Thank you so much, and I feel very humble to have you all on this podcast today, and just sharing this amazing story. A lot of families that we work with, we have similar situations, but they can’t face the trauma, again, they could not. I understand, it’s been too traumatic, and I really appreciate you sharing this so openly, and really sending what I believe is a message of hope to
many, many families out there, all over the world, that are facing a similar crisis, reach out for help.
We would never claim that we can save a life, we never claim that. But we can point you in the right direction, and can also remind ICUs directly, or indirectly about families’ rights, because unfortunately, I also need to say many ICUs, doesn’t matter
whether it’s here in Australia, or in the U.S., or in the U.K., trying to walk all over patient or family’s rights, and that’s just not right. It’s just not right.
Yes, I understand the constraints in ICU is, and I get that working there long enough to understand all of that inside out, but we are dealing with people’s lives. Imagine what your day would look like today, if you
weren’t here.
Joseph: Yeah.
Ariana: Yeah, absolutely. I think just reiterating that, have hope, don’t give up, and don’t feel isolated in the
process. Get support wherever you can, even though it might feel like you don’t have time, take a bit of time. Sometimes it’s, like you said, the goal isn’t always to save somebody’s life.
For us, really, I’d say above that, it was being able to honor dad’s wishes and values, which is what I’d hoped for myself too, if I was in a place to be able to say what I want, and what I
need. For somebody, that might be to switch off the machines. But for somebody else, it might be to keep going till the very end.
Patrik: Yeah, absolutely. What I also know from experience is, families can accept if a life comes to the end. They can accept that, if they see that they’ve been treated well, that
everything has been tried, that things have been transparent. It’s a very different process of, say, compared to saying, “Well, tomorrow at three o’clock, we got to stop everything.” Families, what they’re looking for is really respect, and they’re often not getting it, because of the constraints that are a reality in the ICU environment. All families want is, they want to be heard, it’s all they want.
Ariana: Yeah, absolutely. Look, it’s interesting times. I think in so many industries in the world, at the moment, people are tired, people are burnt out, there’s supply-demand issues. Like you’re saying, so many things that, unfortunately, you do come into contact with in a situation like that, and do. The context is important, and it does weave into, unfortunately, what you are dealing with at your
own individual level. Just even being mindful of that can make a difference that you have a bit of an awareness of what’s happening around you, because otherwise, you can have your blinkers on, and be missing important details.
Patrik: Yeah. Yeah. Okay. Well thank you so much again. Any final thoughts?
Ariana: Not for me. I think that, that we hopefully covered the main things in there, but maybe just one more time, have hope, I think, would probably be our sentiment.
Patrik: Yeah. We’ve got the living example here too, that there’s reason to be hopeful.
Ariana: Yes, absolutely. We’re very grateful that that’s the case, and it’s very life-changing that you appreciate every single moment in a different way. While it’s horrific and difficult,
there’s been so much good, actually, that’s come from this experience for all of us.
Patrik: Yeah.
Ariana: There’s light at the
end of the tunnel.
Patrik: Yeah. No, that’s wonderful. That’s wonderful. Bernard, any final thoughts?
Bernard: Yeah. I just want
to take, go one step back to what we’re saying. Obviously, yes, if you do have a good family structure, and family support around you. But unfortunately, there are instances out there, when maybe not all families might align, or get along, or be there to support each other.
I think having a service such as yours, maybe for someone who’s just a single child, or maybe other
family members have passed on, there’s no contact to have that support structure there, and someone to provide a level-headed guidance to them, because it can get very stressful at times. I know just speaking through our personal experience, one of us might have been really stressed one day, the other person might’ve been able to bring a more level-headed response.
If you don’t
have that support structure at you, there are services such as the ones that you provide, Patrik, that can, I think, be that shining, maybe not the shining light, but just that light of guidance for people.
If anyone’s ever hesitant or unsure, I think just always reach out, and look for that support, it is there. Just through personal experience, I would recommend your
services, Patrik, because we don’t know you. There’s no personal association or anything with you. We just came across you. I hope no one is ever in our situation or any similar situations, but if they ever are, I would highly recommend. If you need that support, I would highly recommend you reaching out.
Patrik: Thank you. Thank you. Joseph, and Jenny, did you have any final thoughts?
Joseph: Yes. Now, I’m trying to remember everything, and thinking about all that situation, and I think the key for my survival is my family, because they give me support all the time, and they give me some energy to help me to survive, and everything. Everything in the end was, for me and for my family was, I’m today here. I think never give up and all up to the end, you have to fight for, or try to beat everything, and at the end, to try to survive.
Again, I say thank you to everyone who helped me, and give me that energy, and everything to survive that. Thank you.
Patrik: Thank you. Jenny, did you have any final thoughts?
Jenny: Actually, I just want to send, actually, message to people, human beings all over the planet. Please find someone like Patrik, if you’re in a situation like us, or another person like Patrik, and you are not going to regret actually trying, helping someone. You try, if worked out, okay. If not, you’re not going to feel sorry. But I want to say one more time, thank you, Patrik. You are like part of our family. Thank you so much. Thank you for
everything what you did for our family. Thank you.
Patrik: Thank you. I feel very honored having you on this call. Feel very honored. Thank you. Okay, well, thanks again.
Now, if you have a loved one
in intensive care, go to intensivecarehotline.com, and call us on one of the numbers on the top of our website, or simply send us an email to support@intensivecarehotline.com.
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Thanks so much again for watching.
This is Patrik Hutzel from intensivecarehotline.com.
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