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Hi it’s Patrik Hutzel from INTENSIVE CARE AT HOME where we provide tailor made solutions for long-term ventilated Adults & Children with Tracheostomies and where we also provide tailor made solutions for hospitals and Intensive Care Units whilst providing quality services for long-term ventilated patients and medically complex patients at home, including home TPN.

In last week’s blog, I talked about,

CHECKLIST FOR INTENSIVE CARE AT HOME WHEN TRANSITIONING CLIENTS HOME FROM ICU/PICU

You can check out last week’s blog by clicking on the link below this video:

https://intensivecareathome.com/checklist-for-intensive-care-at-home-when-transitioning-clients-home-from-icu-picu/ 

In today’s blog post, I want to share a case study on how we can help clients.

End of Life Care at Home with INTENSIVE CARE AT HOME, Some Case Studies!

Patrik:   Hello everyone and welcome to video podcasts of Intensive Care at Home, where we provide tailor-made solutions for long-term ventilated adults and children with tracheostomies, and where we also provide tailor-made solutions for hospitals and intensive care units whilst providing quality care for our clients, and we also provide home TPN.

Today’s episode is about, “Palliative care at Intensive Care at Home”, and we want to talk about couple of cases that we had recently, that we looked after with palliative care at home instead of those clients being back in intensive care. I want to welcome our clinic liaison nurse, Cathy Dunlop. Hi Cathy.

Cathy:    Hi.

Patrik:   I want to welcome Vanessa Larsen, one of our CCRNs working for Intensive Care at Home. Hi Vanessa.

Vanessa:   Hello.

Patrik:   Thanks so much for coming on to the podcast. We had in 2022, we named them Nick and Jim, those are not their real names, ones we have been providing palliative care with Intensive Care at Home from day one. Last year’s palliative care cases with Nick and Jim were sort of drawn-out long cases where we believe we could do our best work by keeping those clients at home and have end-of-life at home with their families. We think that was really good work we’ve done. But before we look at those case studies, I really want to talk about where this all started.

I think the three of us, we have all worked in ICU for a long time and I think we had all identified that palliative care in ICU, there’s room for improvement. I’m sure we all have as a collective, not only the three of us, but many ICU nurses have heard many families in ICU, they would like to have their loved one at home for end-of-life care.

We have made this a reality, or we are making this a reality here at Intensive Care at Home. We’ve had palliative care cases at home in the early stages when we first started providing services in 2014. We have also provided palliative care to a lot of pediatric clients through the Royal Children’s Hospital here in Melbourne.

So, Vanessa and Cathy, if you want to share your experience from ICU to begin with before we look at our cases, what was your perception when you worked in ICU, how palliative care was done, and where did you see room for improvement? Whoever wants to start.

Cathy:   I’ll start. From where I have worked in intensive cares, it seems that palliative care is not necessarily part of the plan of care for the patient, it becomes a decision towards the nearing end of life, when end of life is imminent in terms of inotrope use, et cetera. It’s not really palliative care, it’s end of life, very sudden end of life, where maybe palliative care should be starting more in terms of the client prognosis, discussion with the family much earlier on in the process so that everyone knows what to expect and everyone knows how to make the patient more comfortable rather than the goal being to, “Oh, just keep them alive at all costs.” Usually to the detriment of patient comfort and dignity and also the family because maybe they’re expecting something that is not viable. Sometimes on occasion we’ve done it a bit better, but usually not that well.

Patrik:   Vanessa, what was your experience working in ICU with end-of-life care or palliative care?

Vanessa:  Yeah, I agree with Cathy. It’s very different to the home palliation. Like Cathy said, it’s end of life. Very rarely you would have the opportunity to have a well-controlled, comfortable, beautiful palliation situation, often and that can be looked from ICU has a whole range of cases that could get to end of life, but the goal in ICU really is to try and keep people alive and get them out of ICU so they do whatever it takes. A lot of the time, dignity is lost in that process.

I think environment wise, ICU, families, loved ones, I think also had the perception that there’s so much intervention, medical intervention, medications that can keep someone alive. From the get-go, that’s the end goal, which it should be to a degree. But then when things turn, or if medical practitioners think, “Oh, we could nudge this way a bit more”, they could have actually pulled back and you could have a process for palliation. It’s a different environment. It’s not comforting. It’s not like the warmth of someone’s home. I never really had a good palliative experience. I had some nice end of life, but it’s very quick. It’s in with hours, if not day, it’d be maximum. But I didn’t really experience proper palliation until working with Intensive Care at Home.

Kathy:  And once again, the patient doesn’t have the whole family around all the time. You might have the whole group of family at the actual end of life time. It might be the last hour, it might be the last two hours, it might be the last ten minutes, but they’re certainly not around for days on end whenever it comes.

Vanessa:  Yeah, that’s a very sad point. ICU is usually constricted to two people, isn’t it? Unless COVID, it was none or one. But the problem being weaned, you might have the end goal, “Okay, now, we can bring family in” but it’s not long enough. Yeah, I think when you then experience palliation at home, when I’ve experienced people to be with their loved ones for days and have that really intimate time together, that’s what palliation should be. That’s what it is. Which you get to see out in the community now, which is good.

Cathy:  I know a lot of ICUs would try and have the patient in a private room, but it’s still not a good experience for the family to be walking in and out of an ICU into this room they’re not familiar with into a very institutionalized room. That’s what they remember. That’s how they remember that their last memories of their loved one in this institutionalized room with machines and the visiting.

Vanessa: That’s right. It’s traumatizing because they’ll probably never look at hospitals the same. They’ll never, like it’s this. I’ve been in end-of-life situations where families had to walk by something like an emergency happening next door. Despite being in the trauma of losing someone you love, they’re also in a pretty traumatizing area, which we got really like hard skin too because you see it every day, but people that don’t, it’s just the complete opposite really to palliating at home.

Cathy:   Then you get change of medical staff, change of nurses every day, the inconsistency there as well.

Patrik:   That’s a very good point, Cathy. Yeah, that’s a very good point. Obviously, something that is very important for our clients across the board is the consistency of staff, which they don’t get in ICUs.

Vanessa: No.

Patrik: But we are trying very hard. We’re trying very hard for that consistency.

Vanessa:   Yeah. You might be on three day shifts in a row or something, so maybe you’ll have a few shifts. Some units do like consistency, some don’t. Some might send you back to the same patients, some might not. Whereas at home, as we know, that’s pretty much what every family and client strive for us have a consistent roster. When it comes to palliative care, I just cannot recommend enough that is the most important thing to have nurses that the family and the client trust.

Patrik:   It’s all about trust.

Vanessa:  Yeah, it’s the end of their life, it’s the end of their loved one’s life. Having someone who just fits in, just you know the family, you know the home, the situation so you can literally just slide in and almost be there but not be there.

Cathy:    Everyone’s on the same page so management doesn’t have to be explained over and over and over again. The little nuances that the patient is used to don’t have to be explained either because the staff already know it.

Vanessa:  Yeah. Yeah.

Patrik:  I think for anyone that’s listening or watching this that only knows the ICU side of things, we are talking here about months for one client, it was a few months, and for Nick, we looked after Nick for 18 months, nearly two years before he passed away. We’re talking about really long timelines here, not this sort of rushed end of life like in ICU. Just to put it in perspective for our viewers or listeners what timeframes we are talking about.

Vanessa:  That’s right. Because ultimately both of those clients were palliative clients from the get-go so one who required 24/7 BIPAP and one who had a disorder that was not going to allow him to live along him, and he lived an incredible life up until he did. At some point, that would take his life. You are right, you already go in knowing that. It might be when you know them, it might not, you don’t know, but you go in knowing that they are still under palliation. That doesn’t mean their life, they don’t get out and do things. It’s the palliation versus the end of life. Palliative care, you can still give someone a really good life and then as things might take a turn and go downhill, then you know you’re starting to commence, “Okay, we’re kind of moving into that end-of-life process.”

Patrik:   I’m playing devil’s advocate here, Vanessa, do you think that with all due respect to ICUs, do you think that ICUs think that we can give or provide incredible lives at home for our clients until the end of their life?

Vanessa:  I hope so.

Patrik:  Well, I think so. I think we’ve proven it more than once. But I also believe with all due respect to the ICU community, we believe we know what’s possible in the home as opposed to what ICU think it’s possible outside of ICU. Because both of those clients, we know or we believe had a really good life up until the end in an environment where they wanted to be.

Vanessa:  Yes. Look, honestly, I didn’t know or think of that side of things while I was working in ICU. I may have looked at a situation that I was then in with Intensive Care at Home and think, “Wow, how do you provide that person a good life or how do you…” That sort of thing. But then actually you really can, I think once you are in it and you are working and despite someone being under an umbrella of palliative care like Nick had, especially I mean, busy life, super busy life until the last sort of few months when things just started to continually go downhill. It’s quite incredible to think of palliative care doesn’t mean it’s the end there and then.

Patrik:  I would like to use the term quality of end of life. That’s the term I would like to use.

Cathy:  The other thing is Nick had his dog with him, and our other client had his cat with him.

Patrik:  Jim had his cat with him.

Vanessa:  Yeah, exactly.

Cathy:  Never happened in the ICU necessarily.

Patrik:  Yeah. Well, in ICU, you can’t even get more than two visitors in let alone their pets.

Vanessa: That’s right. I know. Actually on that note, when I was working in ICU, we used to have a therapy dog that would come once a week and 90% of patients, if they were awake, would want to see the dog, which was living proof that animals are on this planet for a reason. I think they bring humans a lot of joy and comfort and especially for these two clients, Nick and Jim, a lot of comfort. They are by them at all times and that’s right. That’s not what you see. You can’t see that in the ICU.

Patrik:   Look, none of us as far I’m aware has worked in ICU during COVID, our ICU experience is pre-COVID, we can only imagine what our end of life might have looked like in ICU during COVID.

Vanessa:  You don’t want to think about it. I don’t.

Patrik:  No, you don’t want to think about it. No, I don’t.

Cathy:  Only an isolation how I would imagine it should be.

Vanessa:  Yeah, and the thing is I’ve got friends who are still working in ICU around the world. During COVID, it was seriously eye-opening and a lot of them sad, have so much trauma from watching people pass away on their own with the nurse. That’s horrible because the ICUs had no control over that. That was the pandemic. But to know that we can still provide end of life care and have families together, pretty special.

Patrik:  Vanessa, have you always had an interest in palliative care, end of life there or did you just come into it by accident? Tell us a little bit more about that.

Vanessa:  I think so. I think when I was working in ICU, I’d often, once I had done my new grad years and things and they start figuring out, I think the nurses where they bloom, I guess, they try and put you here or here, on the roster of the day. I’d often end up with end of life, really end of life or long-term patients that may then become palliated or so. Towards the end of my time in ICU, I was doing a lot more of that than I was doing, the traumas coming in or something. I would spend a lot of time with people who were passing away and you’d either leave feeling accomplished or you’d leave feeling terrible because you’d feel like that wasn’t how it was meant to be.

Patrik:  How did you feel?

Vanessa:  So helpless, gutted, you feel bad, you feel guilty for that person who passes away and their family when it’s not done in a nice situation. Sometimes you don’t have control over that because of how unstable someone is or how it can turn so quickly. Sometimes you don’t have control, but sometimes you do. It’s not even based on the patient, but even the environment, just like we’re talking about before, the environment you are in during it and watching how families are coping. Then, I guess I’ve always just sort of had a bit of a pull to it. Yeah.

Cathy:   How did you end up in…

Patrik:  Vanessa…

Kathy:   Sorry, Patrik, how did you end up with Intensive Care at Home? We weren’t really advertising what we’re just talking about necessarily.

Vanessa:   Yeah, I know it’s so long ago. I wanted to move out of ICU because I think that aspect of things was starting to really drain me. Not being able to care to the full capacity I wanted to and feeling a bit more let down than I maybe was being lifted up, around amazing staff and things, but didn’t feel like I could fully be the nurse I wanted to. I think that brings in that sort of community aspect and being really one-to-one. Then I was looking I guess for a community role, which I was very open to what that would be if it would be in the home, if it would be palliative care, I was just kind of open. That’s when I saw Intensive Care at Home advertised. The rest is history.

Then now, I loved it and so then I loved the concept when I met yourselves in the meeting. I loved that concept of these clients who would be in hospital, but they get to have nursing care and often for majority of them, at a high-level requiring ICU trained nurses and they can stay at home. That just resonated with me really well. Then, I think from there that sort of comfort care then grew as well over time.

Cathy:   Okay. How do you see, I think we’ve probably briefly touched on it, but can you talk about the differences that you are experiencing between the palliative care and the ICU and the palliative care that you were able to provide in the home?

Vanessa:  Yeah, I think like what I said before in the ICU slash probably in the hospitals in general, not a very controlled environment despite you think ICU might be. I think in those situations it doesn’t feel it to me at all. I think in the home with Intensive Care at Home, you have so much more control to make something, create a comfortable space, like a warm space, a loving space for someone to pass away. I just feel like we’ve touched on in the ICU it’s end of life that’s keeps them uncomfortable and hope they pass away comfortably. Whereas in Intensive Care at Home, you can have a huge lead up to prepare for the process when palliative care becomes end of life care. It’s like it’s a transition so you are already in that palliative care space, and then as people deteriorate, you can move into more end of life. I just got this actual control over it.

I think that’s a lot of it is just knowing the clients for a long period of time, building a plan, you can have a plan in place for these clients. You can have it years in advance that you know when things might go downhill that you can then transition into end of life. It’s this control that I think you just don’t have it in high intensity area like the ICU.

Cathy:  In the ICU, I think I’ve experienced one day where we’re doing full treatment and then suddenly, “Oh, we’re now doing palliation.” It’s very, as you say, it’s not a journey from one to the next. It’s a sudden decision, change the management now.

Vanessa:  That’s right.

Cathy:  Today or in the next half hour or something.

Vanessa: Yeah. That’s exactly right. Because it seems, which you understand as well because your aim is to keep someone alive and get them out of ICU. Your plan isn’t from the get-go, let’s look about palliation. It’s like, no, the plan from the get-go and I is to try and get someone alive so often you are right, Cathy. It’s that sudden decision where it’s like go, go, go, go, go and you might have a family meeting or something and suddenly it’s just change of plan because they’re going to start withdrawing care. You’ve been in that adrenaline mode and so of the families, everyone’s been in adrenaline mode, and all of a sudden, it’s like click at the fingers, we’re doing end of life.

To me, there’s no palliation. It’s like go, go, go. It keeps one alive. Okay. Now, we’re going to start end of life care. At home, Intensive Care at Home, it’s like palliation could be long period of time, a few months, whatever it might be, but it transitions into end of life care, like a smooth transition, controlled transition.

Patrik:   Do you think there could be a misconception in hospitals in the public eye between palliative care and end of life care? Do you think that people put it as a synonym almost?

Vanessa:  Yeah, absolutely. Even with our client who passed away, so Nick, his mom. When he had been deteriorating as over months and we got to a point where there were decisions that had to be made and as we sort of discussed, I had to discuss with her about that transition because in her mind she says, “Oh, someone said we are palliating.” I’m going, well, we have been and sort of Nick’s always been palliating, we didn’t keep that kind of same care, but we are now transitioning into end of life. It does feel like for her, that felt really full on to say end of life. But to me, that’s two different things. Making her aware of that, and then once we talked about it, she’s completely understood.

But I think 100% people think some will say palliative care, end of life, same umbrella term. Then some of them I think who experience, they’ll be having a loved one who is sick, palliative care feels comfortable and then end of life is really scary. I think there’s two parts to it. I think in the hospitals, maybe people think it’s the same kind of thing. Palliate is end of life care. Then I think in home care is why we always talk about it. Because I think that transition can be scary, but it’s really the same process as palliative care. You’re just at the end.

Cathy:  I suppose you…

Patrik:  I think it’s fair to say that.

Cathy:  I think you’re right…

Patrik:  I think it’s fair to say that.

Cathy:  I think you’re right in certain terms of end of life versus palliative care in intensive care, I can’t say is always interchangeable, but often is interchangeable. One day, you are actively treating and the next day it’s end of life, but it’s called palliate. But you’re certainly right, there’s not really a transition with comfort care between active treatment and end of life.

Vanessa:  Which is something that I didn’t know until we started doing palliative care properly with Intensive Care at Home. I would’ve thought when I was in hospital that if someone goes in a palliate or we’re going to start into life care, same thing, because it kind of is in the hospital. I think it’s the same. Some people use the term palliative and some will use the term end of life care where I think it’s extremely important that they’re two different things. If you talked to any palliative care nurse or doctor out there you know how strong they feel about that as well.

Patrik:   I think another thing that we are finding across a number of clients, many of our clients are on the palliative care teams and yet they’ve been living at home with our service for many years now and they’re sort of hands off, but they have a role to play when the time comes.

Vanessa:  That’s right. It’s all different because you’ll have some clients like that who palliative care won’t really have to have too much involvement, but they’re there. Then recently, Jim, they were always involved from when I started there, but it was quite relaxed, medications, you might do a phone call once every few weeks, or they do an assessment in those last three weeks, maybe-ish, full on. The last few days every single day, they were amazing. The palliative care team as well transitioning, they know that you’re palliative care and then your transition into end of life. That’s exact same as what we provide. It should be the exact same feeling is that someone’s under palliative care team. They’re like, they’re palliative care patient, but they’re not the end of their life yet.

Patrik:  Obviously, you always had an interest in palliative care, sounds like from an early stage in your nursing career. Do you think you were automatically drawn to our palliative care clients or did you were just allocated to these clients and you didn’t quite know what to expect? Tell us a little bit more about that.

Vanessa:   Yeah, I think background, I’ve always had an interest in palliative care, but not exactly drawn with Jim, yes. But I’d experienced palliative care with Nick before that. I guess with Nick, I knew that possibly when I’ve known him at some point he would pass away. When I met him, he was thriving. He was really, really good, there are sick days, but comparison two years later, whenever it was towards the end. I think because that situation was so well controlled, it was the most perfect end of life, palliation to end of life that you could ever wish for. The fact that all of his family got to see him from Queensland, everywhere. The fact that everyone who loved him got to see him and they got to all be together in the house in his bedroom. The fact that he got to pass away on his bed in his mom’s arms with the dog, what else would you want? In his bedroom.

I think because despite how sad it was, it was such a beautiful ending. I think it just showed me that it’s like you actually can make the end so nice. So then with Jim, always knew that he again would pass away with his condition and probably in a shorter period of time than since I’d known Nick. But I knew it could be done well. I think it’s this experience too. In our service, you read your clients sort of what’s going on. With Jim, I knew that a few days before that I had that nurse feeling where you’re going, “Okay, this feels like this is getting towards the end.” You get your palliative care nurse and doctor and you get everyone involved so everyone is very much aware. Again, lovely ending because it was controlled and it was at home again with his loved one and the cat.

Patrik:   I think another aspect we haven’t talked about in too much depth now, obviously, we talk about the comfort for the patient. We have briefly touched on the discomfort of the family in a hospital. What about the comfort of the family with palliative care at home?

Vanessa:   It’s pretty amazing. I think the people I’ve talked to since it happened, the family and just always go back to it, they always go back to it and say they just wouldn’t have wanted that to be any other way. Despite losing someone they love, they still go back to the time in those days and can go back with a positive mindset to say, that was perfect. That’s just what I’d want and what they would want.

Patrik:  With Jim in particular, unlike Nick, where we had a few hospital admissions. With Jim in particular, he really spent the last three or four months at home. You imagine just what that meant for his wife at the time, not having to go to a depressing hospital every day.

Vanessa:  Yeah. That’s what she was keep going back to is that just being at home, being in their space, he built their house. Everything about that home is very, very special to them. The fact that they met later in life, they bought a house together and he just renovated the whole thing. It was there. They got married in that house. That house just meant everything to them. Jim literally spent every single day, he was too sick to actually, we could go outside, but leave the premises. But he could be in his happy space. Then towards the end, he got to be in the room that he loved being in, and for his wife, she’d just keep going back to that and just so grateful.

There’s so much more to it as well. When a family member has to drive under stress to a hospital, they have to pay to park, all these things that are extra burdens on someone when you’re just trying to be with the one you love.

Patrik:  They have no control over the hospital staff, whereas I argue they have a bit more control with us.

Vanessa:  Yeah. You have no control. You could try and request a nurse in ICU. I doubt it. It’s just the luck of the draw there. The thing is you hope to build teams at home that no matter who would be on, it would be someone that…

Cathy:  They’re comfortable with and they’ve known.

Vanessa:  Yeah. Yeah.

Patrik:  Vanessa, we can only change the people’s lives one client at the time. I believe we have changed many lives and also an end of life situation. But where do you see the future for palliative care with Intensive Care at Home for some intensive care patients? Where do you see the future in all of this?

Vanessa:  I think it’s going to become…

Patrik:  Or where do you wish?

Vanessa:  Well, I think it’s going to become a really key component to Intensive Care at Home. I think it should be. I think especially last year as well and you’ve already had palliative clients since you’ve had the company. But I think over the past year or so, I think it’s a really, really special aspect of care to be really good at and put lots of time and energy into. Because if someone were to say, I had an amazing experience with this company during when I lost my mom or something, that’s what every human really wants. They want if they’re going to go down that road for at least it to be a nice ending. I think it’s going to become, to me, it should be even like we are putting in the effort and time to keep people alive. But when a time comes that we’ve also got lots of time and energy put into the palliative care, end of life, and then end of life aspects. That’s just as good as the effort put into keeping that person alive.

Patrik:  I think another thing that I think we’ve learned over the years, and it’s also something that frustrated me when I worked in ICU, end of life is not a one size fits all, which I believe I felt in hospital, it’s often a one size fits all, but we know it’s not.

Vanessa:   This is the thing, and that’s forever changing too. You’ll have probably every different client, it’ll be a different ending, it’ll be different needs, different… I think that’s why it’s forever growing and learning and changing area and then being able to adapt too because you might have one client that’s a long nice process and one that it’s really quite sudden, but it’s knowing you can still make that process nice despite if it is quicker.

You’re right, I think in hospital it’s like, yeah, well, it is structured like this, this, this, we give this, we do this, we extubate them. You know what I mean? Sort of like, that’s the way we do things. But then, at home and it’s different. They’re all different conditions, different illnesses, different reasons as to why they’re being palliated, such going into end of life care. It’s forever changing, I think, you can learn about it and make it a key priority, but then knowing that it’s going to probably be different for every client.

Patrik: Well, absolutely. I mean, it’s individualized care, whether it’s ongoing care or whether it’s end of life care, it has to be individualized. I guess, that’s what our service is all about. Make it about the individual. It’s not about us, it’s about the individual and the family, what they want in those unique circumstances.

Vanessa:  Yeah, that’s right. Yeah, that’s exactly right, and respecting what they want in those times.

Patrik:  Okay. Why do you think that, again, sometimes end of life in ICU, not always, can be rushed as well, is that sort of, Cathy, your experience like Vanessa sometimes?

Cathy: Yeah, that’s what I was alluding to before. Sometimes it’s rushed sometimes just to make another bed. It’s not really, I can’t say all the time. Yeah, it’s not…

Patrik:   Whereas we can achieve the same goal, make room for the bed. We can achieve the same goal by also creating that time window for the clients to have more time. Again, what I’m saying we are providing a win-win situation, we are creating that empty bed for the ICU and we are creating the time the families often want.

Vanessa:  Yeah, totally. Exactly. You’re so right Cathy with this, I’m sure everyone who’s worked in ICU has got situations where like…

Cathy:  Or you’re planning admission for the next shift because this bed will be empty by then.

Vanessa:  Yeah. I’ve had traumatic passing where then we had to move the person to another space because next admission need to go into this bed, and it was just like, “Oh my God.” Because family haven’t even got their head around. It’s just, I mean, that’s environment and they don’t have much control over that either because it’s a hospital and that’s just what happens. It’s fast-paced and there’s people that need the care in ICU, therefore they need to rid of anyone who may have passed away or that’s where it doesn’t think of you with palliative care. If you’re interested in that area, then it doesn’t sit well.

But you’re right, Patrik, Intensive Care at Home gives ICU a bed and it gives family who wants to be with their family member for a whole duration of time whilst in the comfort of their own home. I think when Nick was passing, he had all of his family, probably like 20, 30 of them, they ended up in the house, but they would just transition between going to see Nick, going and sitting in the lounge for a bit. You can just see it’s just nice, because if they need space, they’ll go down the end of their house and have some space.

If they want to go be with Nick, they would go into the room. Sometimes they’re all in the lounge together, sometimes it’s like this free flowing way of grieving, whereas you know what it’s like in the hospitals, you are in with the person or you go sit outside and then other people who are… It’s traumatizing. The family told me with him, they woke up, one of us woke up at 3:00 AM and went and sat with Nick for two hours with the night nurse and then went back to bed. They were just all doing what worked for them to grieve.

Cathy:   You’re not sitting in the waiting room, ringing the door?

Vanessa:  Waiting to get buzzed in. Yeah.

Patrik:  Yeah. No, I think that’s a big component of it, but that also brings me to choice and control. I guess families are dealing with a loss of their loved one in ICU. That’s one big component that they’re grieving about and they have no control. I believe healthcare needs to be about choice and control. Again, I believe we give clients or patients and families that choice and control, but I also believe we give choice and control to ICUs to have another option. We know they need the bed, but we also know that families want more time and that they do not want to have that end-of-life situation in ICU. It’s all about a holistic, I believe it’s about holistic healthcare or holistic end of life care, whatever term you want to use.

Vanessa:   That’s right. Intensive Care at Home is definitely holistic nursing, I think it is. I think you do all you would do in a hospital that keeps them alive. But then when things become tough, when it’s such decisions need to be made, I feel like family and loved ones are so involved because it’s literally right in front of them. Then when it comes to the end, again, they feel like they’re completely involved in the whole situation in the comfort of their own space.

Patrik: What do we think as a collective here, many end-of-life situations in ICU can be highly emotionally charged sometimes? I’ve seen it. I’m not sure about Cathy, Vanessa. I’ve seen highly emotionally charged end of life situations in ICU. I believe we can take that burden away from an ICU and we can deal with that at home much more effectively. I don’t think it’s as emotionally charged at home because people are in the comfort of their own home.

Vanessa: Yeah, I agree. I think that’s because everyone, people going through grief, deal with grief very differently. Some people shut down, some get angry, some cry, some don’t cry. But I think, and then the hospital heightens everything.

Patrik:   I also believe that I believe people can accept that. But I think what people struggle with is having an end-of-life situation that’s potentially not on their terms. I do believe that’s what people struggle with. I do believe what we provide at Intensive Care at Home. Once families and patients have come to terms with, this is an end-of-life situation, but please let it have me on my terms.

Vanessa:   Yeah, a better life.

Patrik: I think we can facilitate that.

Vanessa:   Yeah, I think it’s human nature to want to have control over life. I think even if you don’t have a choice because your loved one or someone, its family, friends are going to pass away, but you have some form of control over it. People still want to have control. I think it’s literally just human nature. Whereas I’m sure same as you guys, the most amount of emotion you’ve seen probably in ICU is when people don’t have any control.

Cathy: It’s also just…

Patrik:  100%.

Kathy: … simple things like dying in your own home, in your own bed, in your own nighty, not in this horrible hospital gown, you might even have a make up on and all these little things that don’t really happen in the hospital.

Vanessa:   That’s right, Cathy. Also, one thing that’s huge to me that really hit me is in the home, you can have your loved one at home for as long as you want since they pass away. There is no rush. For some people, it might be like, please, can we take the spirits here, but their body, can we please straight away? That’s okay. Others might have a whole night, others might have two or three days. You can have that person once they’ve passed in your home, there is no timeframe. If you needed a day to lie with them or sit with them or something, or you just need a couple of hours, or you might just think, no, I kind of need, this needs to clear now, then that’s fine, but there’s choice. You actually have some choice.

What about religion too? Lots of religion that would like to have body with them or people for a long period of time, which they could have at home. In the hospitals, and that’s not anything on the hospital, that’s just because people need to have those beds who need to be treated. You can’t have someone in a room if they’re taking up space and all that sort of stuff. But at home, it’s like, well, when I think with both recent clients, one was maybe half a day, a few hours, and the other was over the night until the next lunchtime or something.

Patrik:   Well, I think you are making a very valuable point. I didn’t even think of that. But religion, spiritual beliefs, cultural beliefs, can those needs be met in a hospital? Can those needs be met at home?

Vanessa:  Yeah. I know in hospital, I think people try, a lot of staff, especially nurses, you try because you know how much it means to people. But sadly there’s only so much you can do. But at home, again, the control thing, you had control of the environment. Like Cathy said, you can have all your favorite things, you can have the people, you can have whatever it is. Families might have their loved one, like I’ve said for days afterwards and accommodate.

Patrik:   Favorite priest, favorite rabbi coming and going, whatever that might look like for the individual, you can’t always facilitate that in hospital.

Cathy:   Also, without the distractions of whatever else is going on in the ICU, I think like Vanessa said, a lot of people running backwards and forwards, all the alarms going off.

Vanessa: Yeah.

Patrik:   Yeah. Last but not least, Vanessa, why should ICU nurses work for us?

Vanessa:  Oh my God, do it. Leave. Look, it’s what I would say is a rewarding holistic nursing. You get to provide knowledge and skills. I know that you’ve studied to learn, but you get to see an end result. I feel like I was always missing what happens after ICU. It was always my thought all the time. What will happen to that guy? As I said, you just get to see a whole preparation of the input of your care to someone. It’s more intimate. It’s supported kind of work as well. You don’t feel like just a number, which sometimes you do when you work in the hospitals I find. But especially the interaction and that close care you get to have with clients and then seeing someone, seeing a client literally living the best life is very cool. Despite having a pretty harsh illness or disease or disorder, but the fact that they can still go and do things, that they wouldn’t be able to do it if they didn’t have the nursing care, especially that ICU nursing care.

Patrik:   We mentioned it briefly earlier in ICU, you might do three shifts in a row and you might look after three different patients and you may not even talk to them because they’re intubated, they’re in a coma and whatnot. Whereas here, it’s individualized care. You can really get to know a client and their family. You can really participate in their lives. You can be a big part of it.

Vanessa:   Look, yeah, it’s different, but you use your skills and knowledge that you would use every day, but I just think it’s that intimate care where you really do feel like you’re making a difference every day. You might not always feel that when you’re on the floor in an ICU, some days, or you can be easily forgotten. But I think in this type of care, you don’t forget. Yeah.

Patrik:    No, we don’t forget our clients. Whereas in ICU, you can’t recall. We can recall some patients, of course.

Cathy:   Oh, you recall that one bed to deliver the heart.

Patrik:  We recall…

Vanessa:   Or recall the traumatic stuff. That’s what I recall.

Patrik:  Right.

Vanessa:  I recall the trauma events that I had, but you forget. I forget just the standard good stuff you did every day. You just forget that. But I think you don’t forget in this kind of job though.

Patrik:   We remember all of our clients very vividly and their families, of course.

Vanessa:  Yeah. Yeah.

Patrik:  Okay. Maybe we should close it off here. Any final words, Cathy, Vanessa?

Cathy:   I think it’s all been said, really.

Vanessa:  That’s right.

Patrik:  I really want to thank both of you for coming on to this call. Thank you so much. If you have a loved one in intensive care, long term, and you want to explore home care options, go to Intensive Care at Home. It’s on the top of our website at intensivecareathome.com.

I also encourage you to check out our membership for families in intensive care at intensivecaresupport.org.

If you need a medical record review for your loved one in intensive care or after intensive care, you should contact us as well.

Subscribe to my YouTube channel for regular updates for families in intensive care and intensivecareathome.com. Click the like button for this video, share it with your friends and families, and keep the notifications on for new videos and leave your comment below. Thank you so much and I’ll talk to you soon. Take care.

Cathy:   Thank you.

Vanessa:  Bye.

Now, if you have a loved one in intensive care and you want to go home with our service intensive care at home and if you want to find out how to get funding for our service and how it all works, please contact us on one of the numbers on the top of our website, or send me an email to [email protected]. That’s Patrik, just with a K at the end.

Please also have a look at our case studies because there we highlight more about what we can do for clients, how clients can live at home with ventilation and tracheostomies and you can look at our case studies as well at our service section.

Intensive care at home Case studies

And if you are at home already and you need support for your critically ill loved one at home, and you have insufficient support or insufficient funding, please contact us as well. We can help you with all of that.

And if you are an intensive care nurse or a pediatric intensive care nurse with a minimum of two years, ICU or pediatric ICU experience, and you ideally have a critical care certificate, please contact us as well. Check out our career section on our website. We are currently hiring ICU and pediatric ICU nurses for clients in the Melbourne metropolitan area, Northern suburbs, Sunbury, Bendigo, Mornington Peninsula, Bittern, Patterson Lakes, Frankston area, South Gippsland, Drouin, Warragul, Trida, Trafalgar and Moe as well as Wollongong in New South Wales.

www.intensivecareathome.com/careers

So we are also an NDIS, TAC (Victoria) and DVA (Department of Veteran affairs) approved community service provider in Australia. Also have a look at our range of full service provisions.

Thank you for watching this video and thank you for tuning into this week’s blog.

This is Patrik from Intensive Care at Home, and I’ll see you again next week in another update.