THE PINEAPPLE PROJECT | S4 | 05 Tough decisions in the ICU

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[00:00:01] Voiceover: This is an ABC podcast.

[00:00:09] Jan Fran: A question — what were you doing when you were in your early 20s? Oh me? I was drinking Midori and lemonade and the toughest decision I had to make was what to hang from the mirror of the 1992 Holden Barina that my dad bought me. Fairy dice or those smelly Christmas trees? Hmm. Went for the tree in the end. But other 20-ish year olds..

[00:00:34] Jacinta: The doctor said, like, you’re, you’re it. Like, you need to make this decision and you need to make this decision within the next half an hour because if we don’t start treatment within the next half an hour, it’s not going to have any effect.

[00:00:47] Jan Fran: Oh, man, so you literally were the only person in your family that could make a decision as to whether your great uncle lived or died and you had to make it in 30 minutes.

[00:01:00] Jacinta: Yeah.

[00:01:01] Jan Fran: Meet Jacinta. Jacinta found herself making that decision when she was just 24 years old. Kind of puts the whole Barina smelly Christmas tree situation into perspective. Hello. I’m Jan Fran. And this is The Pineapple Project and this season, we’re tackling death. Well, the logistics of death anyway, because that story from Jacinta, it gets a whole lot trickier. It’s not an isolated incident. Folks are forced to make tough calls about people they love all the time.

[00:01:37] Dr. Peter Saul: Jacinta’s situation having to make this kind of decision unprepared is very common, surprisingly common. People wouldn’t realize but this is taking place now every 15 minutes somewhere in Australia round the clock 24/7. So we’re talking 40 thousand decisions of this kind taking place every year in Australia.

[00:01:55] Jan Fran: Hectic. That’s Dr. Peter Saul, an intensive care doctor who specializes in end-of-life care. More from him later. But first, for this episode you are going to need to know about a sexy little term called an “advance care directive” or “advanced care plan.” Sexy enough for you? This is a document that you create which lets people know what sort of medical treatment you’d be up for if you weren’t able to speak for yourself. Stuff like: keep me alive at all costs versus I wouldn’t want to stick around unless I could shower myself because my personality is very independent. In this document, you appoint a decision maker that’s kind of like an emergency medical contact to make decisions that would reflect the plan. How fun’s appointing, people, like a queen or Oprah. More on this later. Back to Jacinta.

[00:02:56] Jacinta: So my parents went on an overseas holiday, they left me as the emergency medical contact for my 97 year old great-uncle.

[00:03:06] Jan Fran: Jacinta’s great-uncle was put into respite care for the trip. Before that, he’d been living at home with them.

[00:03:12] Jacinta: And my parents were like, “It’ll be fine. He’ll just go in there for, you know, a few weeks and you’ll just go and visit him and things and all. You’re the emergency medical contact, but like that’ll be fine, you know, we’ll being able to be contacted most of the time so don’t worry about it,” and that turned out not to be true.

[00:03:30] Jan Fran: Okay. So what happened?

[00:03:33] Jacinta: So mom and dad were away. Everything was going fine for the first, kind of, week and a half, two weeks or so and then he got a little bit sick. The doctor went and saw him at the nursing home. And he was there like, “Yeah, he’s okay, you know, he’s just, you know, settling in.” About two o’clock, I got a call from the nursing home saying he’d been transferred to Queanbeyan Hospital. He had deteriorated rapidly.

[00:03:59] Jan Fran: So you’re at work at this point?

[00:04:01] Jacinta: Yeah.

[00:04:02] Jan Fran: Your phone rings.

[00:04:03] Jacinta: Uh-huh.

[00:04:04] Jan Fran: So talk us through that moment.

[00:04:05] Jacinta: So at first I didn’t hear it because, at that time I was a barista, very noisy, but then I finally as I got, “Gee, I’ve got three missed calls. This must be, this mustn’t be good.” I was fully expecting that they were going to tell me he was dead and they said, “Look you need to, like, drop whatever you’re doing and go to Queanbeyan Hospital. They need you on standby,” and I automatically kind of went into, “Okay, I’m not going to panic.” They had an inkling that it could be an infection but they weren’t sure. Then the doctor came and said to me that “the blood tests have come back, he’s got a urinary tract infection that’s turned into a kidney infection and he’s, kind of, his organs are starting to shut down, his kidneys are. We can administer treatment if you want, but it may or may not work and if it does he may not have very good quality of life after the treatment.” So as soon as I got to the hospital and realized that and they told me he was quite ill, I straight away was on the phone to mom and dad trying to get through to them and I very quickly realised after trying to call them 10 times in five minutes. They weren’t going to be answering and the doctor said like, “You’re, you’re it. Like, you need to make this decision and you need to make this decision within the next half an hour because if we don’t start treatment within the next half an hour, it’s not going to have any effect.

[00:05:33] Jan Fran: Oh, man. What’s going on in your head at this point when you realize that you are the one that has to make this massive decision and you have to make it pretty fast?

[00:05:44] Jacinta: Well, first of all, I wanted to just walk away and just be like, “Yup, no, someone else do this.” If I walk away like can someone else make this decision for me and then I was like, “No, like I can’t, they can’t. I need to do this.”

[00:05:58] Jan Fran: Tell us what decision you came to and why you came to that particular decision.

[00:06:03] Jacinta: So I came to the decision with two minutes to spare, that they shouldn’t commence treatment. It was the hardest decision that I’ve, one of the hardest decisions I’ve made in my life, knowing that making that decision, he was going to die. And so yeah from that point, yeah, he rapidly deteriorated and ended up dying, so that was, yeah, pretty full-on.

[00:06:39] Jan Fran: And were you with him when he died?

[00:06:41] Jacinta: Yeah, I actually sat with him through the whole process of him dying, which I had never even seen a dead body before. I’d never even been in a room with someone who was dying. So I had absolutely no idea what to expect but I knew I couldn’t leave him. It was, it was very full on. There’s this sound that a body makes when someone’s dying, it’s called the death rattle and it is absolutely the most horrific sound I’ve ever heard. I can still vividly remember and that, kind of, started at about 10 o’clock that night and it just got worse and worse until he passed away the following morning just before 4 a.m.

[00:07:31] Jan Fran: God. They just don’t prepare you for that, do they? They really don’t.

[00:07:35] Jacinta: No. They definitely do not.

[00:07:38] Jan Fran: No. Did you end up getting in touch with your parents in the end?

[00:07:42] Jan Fran: Yeah. So about an hour after I made the decision my parents rang me off a pay phone on the side, they managed to get a little bit of reception enough to know that I called a lot and I had to, I couldn’t even tell them. I ended up, the doctor that had talked me through everything was still there and she got on the phone and explained very medically, kind of, what had happened. And then she said, “Your dad wants to talk to you,” and I was just, like, “I don’t even know if I can.” She’s, like, “Just listen, he knows you’re probably not in a state to talk.” And the first thing that my dad said to me was, “You made the right decision.” Which for me, was huge because in the back of my head, when I was making the decision, I was thinking, like, what if mom and dad disagree, like, what if mom and dad like, this is, they would have made a different decision and I was kind of like battling or I don’t even know what, you know, decision they would make, kind of, or perhaps they would have made the same one. But then again they might not have.

[00:08:47] Jan Fran: So that decision is something that Jacinta still thinks about today. Now, you might not find yourselves in exactly, that super hectic position, but you get it, right? It’s going to be infinitely less stressful for anyone involved if you have a plan. Our doctor from before that is intensive care specialist, Peter Saul, sees situations like this play out on the rag and from the way he describes it, dying in the ICU sounds intense.

[00:09:19] Dr. Peter Saul: Yeah, it looks like chaos. I mean, it’s organized chaos, I reassure the public, but it, you walk-in, it’s just people going everywhere pretty much at top speed with patients in lots of rooms in the side, loads of equipment. Lots of things going bing, lots of noise, when you go in there the thing that most strikes you is just the sheer amount of stuff, the stuff in the corridors, the stuff on the desks, that stuff everywhere, machinery, glinting, no idea what it is, rows and rows and rows of syringes, the stuff. And the noise is very striking, the lights never go out in an ICU. So even at night time, it’s all brightly lit and it never gets quiet. Not somewhere where if you were looking to have quiet conversations or, or die that you’d really choose. So yeah, it’s a pretty chaotic very full on environment, 24 hours a day, it doesn’t, never stops or slows down. About one in 10 of the general public will die in an ICU and about one in 10 of the people coming into an ICU. Maybe more like one in eight die in the ICU.

[00:10:24] Jan Fran: Why do you think it’s increasing?

[00:10:27] Dr. Peter Saul: Because it’s becoming an expectation that everything possible will be done in every circumstance and to a degree that works. We have got, we have, in Australia, we have the highest survival of preventable deaths in the world, so, in that age group 39 to 65, where deaths are considered preventable. We have the best track record in the whole of the planet in terms of averting death, but the side effect of that is we overdo it for a lot of people as well now, so we’re throwing the book at everybody. For some it works and for some it doesn’t and we’re getting worse and worse at deciding not to do something because it’s become so grooved that, if you go into hospital and you’re sick, you will end up there unless somebody along the line decides to stop the process and that’s not easy to do.

[00:11:21] Jan Fran: So if a patient comes in and they, you know, they have a stroke or they fall into a coma. They’re no longer able to speak for themselves. They don’t have any kind of advance care directive. Is it incumbent on you to do everything that you possibly can to keep that person alive?

[00:11:39] Dr. Peter Saul: Pretty much, yes. I mean, I’d like to say there are some qualifiers that, I guess, if we thought it was completely bonkers we might not, but the truth of the matter is it’s pretty much a default. If you’re, if you’re critically unwell and you turn up on our doorstep, we’ll do everything, unless we find reasons why we shouldn’t be doing that. Overwhelmingly that would be because people don’t want it but we, it’s very hard to find that out.

[00:12:05] Jan Fran: Unless they’ve kind of specifically mentioned it in an advance care directive or some kind of plan.

[00:12:09] Dr. Peter Saul: Yeah. Well, I mean, that’s pretty rare. If I were to, actually, it’s so rare for somebody to come in with an actual advanced care directive that I would photocopy that and then frame it.

[00:12:27] Jan Fran: Well, I hope that your office is one day filled with framed advance care directive all over the walls.

[00:12:33] Dr. Peter Saul: Yeah, me too because it can be a very, very successful strategy, but it’s actually just as successful just to chat and just talk to your own family and so that they know because they’ll be there, you know, they’ll come. And they’ll end up in the situation of having to make decisions for you if you are not conscious. And that’s a hell of a pressure on people and, you know, be kind to your family. Talk to them, you know, give them a bit of an idea of what they’re supposed to say.

[00:12:58] Jan Fran: Yeah. That’s solid advice, I think. I just want to, kind of, get a little bit more specific in that scenario. So someone’s coming to the ICU. They’ve fallen into a coma. They’re incapacitated, can’t speak for themselves. They don’t really have any kind of advanced care plan or directive. Talk us through, through the steps that you then go through from there.

[00:13:20] Dr. Peter Saul: Yeah, so what we have to establish first is what the realistic possible outcomes are so we have to decide what could happen here what realistically could we achieve here? So that takes us a little time, commonly, maybe a couple of days of testing to see what’s possible. At that point, we have to establish what the patient would have wanted. Given those options, you know, you could survive this, but you’ll never be functional. You’ll never be able to eat. You won’t recognize your family. So we have to understand that that is the situation and then we take that to the family. And their job and many don’t understand this, their job is to try to speak as if they were in the patient’s shoes in that moment. So this is not what they want. It’s not what we want is not what anybody else wants. It’s what they think that patient would have wanted and that’s sometimes, quite hard for them to do if they’ve never had any kind of conversation about this before. So we’ve had couples that have lived, you know, a 60th wedding anniversary couples. They’ve never talked about what they want or what their values are or any of these kinds of things. So it’s surprisingly hard for them to say. Oh, he would not have wanted to be like that. But that is the job. That’s what the job of the family is. They have to tell us that and we base our treatment basically on what’s possible and what the family think.

[00:14:38] Jan Fran: How did DNR wishes come into play? So do not resuscitate, do you ever get folks who say, “I want to be resuscitated no matter what,” and you as a medical expert are thinking, “Oh I just don’t think that’s a good idea.”

[00:14:53] Dr. Peter Saul: Yes. And again that’s, this hasn’t been common in Australia yet. But in America, it’s almost overwhelmingly the case and therefore I’m expecting to see more of it. You know, people say, “Well, I want you to resuscitate me. I don’t care that I’ve got stage-four cancer. I want to live to see my grandchild get her diploma, you know, whatever it takes. That’s what I want.” Actually, I think we really are morally obliged to at least meet them halfway with that. You know, we talked about good death and stuff like that. But for some people it is to go down fighting in that way and I’m not here to try and tell people they don’t want this and they don’t want that if they do want something tell us that too. There’s a limit and I guess everybody would understand that, but we will meet you halfway if that’s what you want.

[00:15:39] Jan Fran: You don’t believe in such thing as a good death. Can you tell us a little bit more about that?

[00:15:45] Dr. Peter Saul: It’s just a bad time, you know, the language around this is terrible, but there’s nothing good about death. I mean, I’ve seen, I don’t even know how many deaths I’ve seen. I don’t even want to start thinking about it. But there’s nothing ever good about it. Trust me. It’s always sad. It’s sometimes tragic, sometimes awful. The best I think we can hope for is a death that is consistent with the way somebody was, you know, we’ve had a patient who had stage 4 cancer and he really wanted to die on a ventilator. He was so determined. We tried to send him home to die. He brought himself back to hospital. He, he was, he was mad keen and when he did die his, his wife said that was so great that you did that because that’s what he wanted. He wanted to go out fighting and he did go out fighting on on a massive machinery. Was that a good death? Well, it probably was but not everybody’s idea of a good death. So I think we should be using terms like authentic or valid or safe are not good when you’re talking about death it just seems to send the wrong message.

[00:16:52] Jan Fran: Yeah, that’s fair enough. I don’t think we really talk about death as something that is authentic. I don’t think I’ve ever really heard it framed that way.

[00:17:00] Dr. Peter Saul: Yeah. Well, I think it has to be real, you know, keep it real is what I’m trying to say.

[00:17:06] Jan Fran: I love that. When you die, keep it real.

[00:17:07] Dr. Peter Saul: Keep it real.

[00:17:08] Jan Fran: Yep. Good. Dr. Saul, what advice would you have given Jacinta?

[00:17:14] Dr. Peter Saul: I think she shouldn’t try to say what she wants or what she thinks or what she believes in she just needs to try to report as best she can what her uncle would have wanted if he could speak for himself and people don’t realize that they’re not there to have an opinion. They’re not there to try and save somebody’s life. They’re just there to try to report what it is they think he would have wanted.

[00:17:41] Jan Fran: Do you ever question the decisions that you made in that time?

[00:17:46] Jacinta: A hundred percent, not so much now. It have just gotten five years. Probably for the first six months or so, I really struggled with the whole scenario. It was very full-on experience to go through and it’s not really something you talk to. You can talk to your friends about especially at 24. I mean, you can kind of mention that you sat with your uncle when he died. But, you’re not going to go into the details because who wants to hear about that really and so, you know, mom and dad were really good. They’re really supportive and stuff and they could see I was kind of struggling and helped me as much as they could but it took me probably until the you know, he’s first anniversary that I really kind of started to feel okay with the decision that I’ve made but it really probably wasn’t until the second anniversary of his passing that I kind of was a hundred percent comfortable with the fact that I had made the right decision.

[00:18:45] Jan Fran: That is an intense situation for anyone to be in, let alone a 24 year old. I’m a decade older than Jacinta and I didn’t even know her great-uncle and even I’m stressed. I’m going to go to the hospital cafeteria for a little me time.

[00:19:03] Grimmy: Who’s got the strong flat white and the caramel slice?

[00:19:06] Jan Fran: Oh hey, Grimmy. I was wondering where you got to. Are you even allowed in here?

[00:19:12] Grimmy: Oh, yeah, I volunteer here. It appeases my guilt. Also, I mean, you know, why I’m here I, kind of, know what I’m doing I could help you out with some tips.

[00:19:22] Jan Fran: Oh, you heard all that? Yeah, actually that would be great.

[00:19:27] Grimmy: Well, one, like that nice man with the British accent said, go to your GP and run an advance care planning or directive and do them a favour, always book a longer appointment. But before you do, two, think about your values, these are totally specific to you. Like if something unexpected happens what matters to you most? Do you value a certain level of independence? Say being able to shower yourself, those questions seem big and let’s be honest they really are but there is a website that can help you. It’s myvalues.org.au. It’s like a fun little quiz about end-of-life care. And three, tell the people closest to you what you’d be prepared to live with it is a full-on conversation, but imagine if they didn’t know and had to make the decision on your behalf. I would say that’s maybe more full on. And if you want to spend more time on the internet than you already do or you just want more info on how this works in your state or territory, do yourself a favor and go to advancedcareplanning.org.au.

[00:20:29] Jan Fran: Thanks, Grimmy. Wow, you’re like a doctor. Except the opposite. Now, can I have a caramel slice please? I’m Jan Fran and this is The Pineapple Project and I’m more convinced than ever that we all need to put in a bit of prep before death because you don’t want to be coming across this stuff for the first time while an ICU doctor in scrubs is asking you to tell them how many fingers they’re holding up or asking you to sign on a dotted line. Mm-mm. Next on The Pineapple Project, I’m someone who you might say understands the allure of a quick little splash into my social media feeds through the Facebook either, they’re somehow hearing it. But what’s going to happen to all those hot takes I had when I die? They’ve got them forever. They’ve got them forever.

[00:21:25] Woman’s Voice 1: So basically you need to delete people from your life. That’s the only solution for you.

[00:21:30] Jan Fran: Humans. We’ve always loved a tribute to the dead, but I don’t know if your relatives will appreciate all those reminders of you hanging around once you’re gone. So you had to prove that he was dead to Facebook first?

[00:21:42] Woman’s Voice 2: Well, I had to first show the death notice that he had died.

[00:21:45] Jan Fran: How to work your social media settings to avoid being a digital ghost.

[00:21:51] Woman’s Voice 2: If you send a death notice in, it gets turned into a remembrance page, but to close it down is actually quite difficult.

[00:21:56] Jan Fran: And we’ll answer all the big questions. Can your mom see into your DM’s? That’s on the next episode of The Pineapple Project. The Pineapple Project is mixed by sound engineers Angie Grant and Krissy Miltiadou. It’s produced by Karla Arnall and Clare O’Halloran. The role of Grimmy aka The Grim Reaper, is played by Rhys Nicholson. The host is moi, Jan Fran. The EP aka executive producer is Rachel Fountain. And Kellie Riordan is the manager of ABC Audio Studios. Look, I’m aware that all this death and dying chat can get extremely hectic. So I’m going to just suggest a quick break here so I can take full advantage of your vulner[00:00:01] Voiceover: This is an ABC podcast.