This presentation discusses the results of a survey asking people about their end of life care preferences. The survey gave respondents a hypothetical situation in which there was a 70% chance of death, a 25% chance of a poor outcome and a 5% chance of death, before asking them how certain they were about wanting treatment.

Presented by Dr Charlie Corke, Intensive Care Specialist at Barwon Health

Dr J Chesterman

Our next presenter is also well-known to most of the people in the room, Associate Professor Charlie Corke. Charlie is a leading intensive care specialist and author of an upcoming book. We don’t have a copy here, do we, but author of an upcoming book called ‘Letting Go’. I’m disappointed. It was going to be called ‘Way to go’ – that was your running title, which I quite liked but it’s called ‘Letting Go’. He’s had marketing discussions with his publisher, I’m sure, but it’s a great pleasure to welcome Charlie to the stage.

[Applause]

Associate Professor C Corke

Well, John, thank you very much. Thank you everybody. We’re at that sort of stage in the afternoon after a day of fantastic talks, where you’re probably thinking that it’s all really difficult and, so, my job is to show you that it isn’t. So, I’d like just to share some early results from a study that we’re doing. The study’s not just concluding but I felt like it was so interesting that it was something that I’d like to share with you today. I hear so often from patients – my family and my doctor will know what to do. That’s my advanced care plan. They’ll all know and upstairs, we had in the session, we were asked would our family know what to do and we all agreed they would. So, let’s have a look at that. 

Where do I have to point this at? Sorry, it’s being a bit annoying. Am I going the wrong way? Here we go.

So, I mean, when the papers come out, they substituted judgement. You know, you can’t decide for other people and these papers – it’s not the one I put up there for you but there are a number of others but they basically say that you give someone a terribly difficult problem and ask them what they’d like and then you give their substitute decision-maker the same terribly difficult problem and they don’t get it right and then you say, geez, they’re hopeless, aren’t they? Well, you know, I can’t choose off a menu for my wife, you know, I’d get it wrong. So, that doesn’t mean that we’re completely incompatible. It just means that, you know, it’s difficult, and when I choose for her, she says I’m wrong but then she eats it. She’s happy. [Laughter] So, let’s just move the reality into this sphere. So, we did an online survey, a snowball recruitment. So, people who did it invited others and invited others and got ethics approval from Barwon Health and, at the time of the data I’m showing you today, we had 420 subjects complete the survey. We gave them a hypothetical situation, and this is the situation where I worry, where I look for an advanced care plan. Ok, so we’ve got a 70% chance of death. So, its’ not good, they’re unconscious. A 70% chance of death, 25% chance of a horrible outcome and about a 5% chance of a good outcome. How do we react to that? Because, this is the time. You know, when you have 100% of a good outcome, we hardly look for advanced care plans. You know, occasional people say I won’t have it and you go, oh heck, but when there’s 100% chance of death, we don’t look for the plan. We just look for a plan when they’re unconscious and we know it’s terrible and we just don’t know which way to go. So, this is what we’re talking about. So, let’s have a look. Let’s see what happens. So, the age range of the people who did it – so, we got a reasonable number of older people doing it but, as I show you later, younger people are much more socially networked and more willing to do it but we’ll do a sub-analysis and we’ve got enough elderly people to look and see if they’re thinking differently and the religion is much the same as the Australian religion profile, so we haven’t got madly religious or madly unreligious in our survey. So, the question is – what do you think people want? So, we gave them the things – certainly want, probably want, so you remember this is the 95% bad, 5% good. Probably want, don’t know, probably don’t want, certainly don’t want. So, what do you reckon we’re going to find? I mean, it’s cheating when I just show you the results because it takes away the effect. So, do you think it’s going to look like this? Who thinks it’s going to look like this? You know, of course 5% is bloody fantastic! I mean, that’s what you do when you work all the time. You save everybody. 5% is bloody wonderful? You go much lower than that, I know you do. So, everyone wants it? Hands up! Oh dear, ok.

[Laughter] 

People divide between those who really want it and those who really don’t want it. This is the Advanced Care Plan I did. Just ask people and they can separate. Tell you yes, I do, no, I don’t. Is that what they want? Is that what we’re going to find? No? Ok, this is what we found. So, it’s right all over the place. You can’t predict. So, this is the people before we started asking people individually what they want. So, we’re not trying to do advanced care planning now. We’re actually asking people who are actually conscious, thoughtful, able to answer them and they don’t know what they want because there’s a lot of people in the probably want and probably don’t want. Well, you know, that’s awful for us. We hate that. We want nice clean things. She definitely would never want it. That’s what we’re looking for. We got all this probable stuff. It’s really hard and don’t know at all. So, fundamentally, we don’t know what we want when we’re in this situation. So, why on earth can we ask people to do advanced care plans? It’s stupid.

[Laughter]

Ok, so, I’m sorry, you know. It’s sort of been a long day and it’s all gone [Laughter] but, actually, let’s take the question that I would’ve liked the others to ask about that’s the reality – we don’t know what we want. So, we go into this awful space and doctors and relatives make decisions for us. Let’s see how people respond to the decisions that are made for them. These same people who don’t know what the hell they want. 

Ok, so first one – imagine your family and your doctor just tried to save you. So, we’ve got three choices here – angry, upset, understanding, pleased, relieved. Because, for me, I want to know who’s going to be angry. It’s anger that I don’t like. Patients who are angry that we treated them. I mean, the ones who died – it’s hard to tell that they’re angry that you didn’t treat them [Laughter] but the ones who survive, I always ask them and, you know, and this is really representative. The vast majority sound understanding, that’s ok. A few are really angry with you and I feel really upset about that when you put them through a whole load of treatment, they’re angry with you. That’s what we’re trying to avoid, isn’t it? So, there’s not too many that are really pleased that they got saved and it’s interesting that some of the people who said in the first one that they wanted treatment were then angry that their relatives treated them. [Laughter] So, you know, it’s hard. So, what about the other way? Imagine your family and your doctor decide not to save you? Well, that’s fewer who are angry, so that’s good. Actually, a lot of people are relieved. So, if you don’t know what people want, probably not doing it in a 5% survival might be better. [Laughter] You know, our default is … certainly, we can listen to it. So, actually, the message is that people are incredibly forgiving. So, all this stuff about I’m in awful agony, I might’ve done the wrong thing for relatives and for doctors and for nurses and for everybody medically who’s involved with it and the ambos have this moral distress. Perhaps our moral distress is far too big. It’s hard as well and we’re just trying to make the best decision and I think that’s the message I’d like you to take away. That maybe we’re being too hard on ourselves. Too high expectations on patients and too hard on ourselves as decision-makers. We’re trying to make a reasonable decision that doesn’t anger people. 

So, we went on and said how confident are you … I mean, already, you know, they didn’t know what they wanted so how confident were they that their family would make the right decision? [Laughter] And, they have amazing confidence. It’s lovely – we’re really, really, really trusted. Completely unrealistically trusting of our families. So, this is the reality, but have you completed it. Of course, they haven’t done an advanced care plan. [Laughter] So, nothing to help them. Amazingly confident they’ll make the right decision with no information. [Laughter] Have you appointed a decision-maker? A lot will say yes but I think they might not realise what it actually involves to appoint them but a lot more think they’ve done it. Certainly, the lawyers encourage you to appoint a medical enduring power of attorney, particularly in Victoria, where you get about $500 for doing it. So, a lot of people do it but without the plan. So, as far as I’m concerned, giving them some information to work with would be good. 

So, the limitations of the study, other than the social network may not be completely representative, female – about twice as many females as men in the sample. Obviously, computer literate, well-connected, socially-connected and fit, because they are functioning and their social network, so not ill. Active participant, participation by motivated individuals in every study you do, you get motivated individuals. Trying to get, you know, completely unmotivated, unconnected people is hard as heck. [Laughter] Hypothetical may not reflect what is in reality, although I think, certainly, you know, the psychologists would say decisions made when you’re not stressed are actually better than ones that you make when you’re stressed but, medically, we always think that the one in stress is better and chances are not that certain in reality. So, our scenario might be a bit too clean.
So, the conclusions – ten minutes. That was mean giving me one. So, few of us … so, I think few of us have firm choices about the sort of situations that we’re worrying about for advanced care planning. So, don’t expect perfection. Most of us are forgiving of choices made by others. We trust our families to make a good choice for us and we should build on that because that’s what everyone is expecting. We should just help them. So, the idea of helping your family to make a good choice is a good strategy and surrogate decision-making. Surrogate decision-makers can generally be reassured that whatever they’ve chosen, they’re probably right. [Laughter]

That’s very important because we now have people with Post Traumatic Stress Disorder because they decided not … and I had a letter after I did something on TV, where this lady wrote to me and said 8 years after her Mum … she decided not with the doctor, not to move her Mum from the nursing home to hospital and she said for 8 years, I’ve worried every night about it. Isn’t that terrible? She said I saw your film and now I feel alright, which was nice. [Laughter] So I was very pleased about that. So, I don’t think surrogates are terrible decision-makers. I think they’re given terrible decisions to make. I think the values directive is fabulous and is what we want to do. People are not that determined that they’re going to write instructional directives. Over the years, the refusal of treatment form has been amazingly pathetically used in Victoria and I … clinicians, most clinicians have never seen one. It’s not a tool that’s been widely used in a useful way in this space. So, getting the values directive sorted out is really good and shared decision-making … we need, for families and doctors, is valued and important and we need to … but I don’t think we do it very well. I don’t think families understand shared decision-making. I don’t think doctors understand shared decision-making and I rarely see excellent shared decision-making at the moment and we need to focus on how to do it and, interestingly, we have a lot more values in our goals of care process and the nurses are saying, because it’s not a tick box saying no CPR, we’re doing CPR. So, they can’t cope with it at all and we’re getting a lot of kickback that it can’t be done and the doctors are the same, saying because it’s not a yes/no, absolute refusal, it’s a maybe and a maybe means yes. 

So, thank you very much and [Applause] I’m sorry to do the marketing push but the ‘Letting go’ is all lots of stories about it, which I’ve written with a view that it can help people to understand what the issues are because the general public, as Danny has so beautifully shown us this morning, haven’t got a clue. So, stories are helpful and, so, there’s personal stories and there’s stories of masses of patients that I’ve looked after over the years that, illustrate, why letting a … why on earth do we have such difficulty letting go. What are all the pressures and how can we do it well? So, it’s a guide to how to do it well and there’s a little … it’s out in February. So, it’s a little marketing thing. Is that enough of a spruik for that?

And I’ve got to go, so ….

Dr John Chesterman 

We do have some questions, if that’s alright? Charlie is happy to take questions. So, we do have a couple of minutes for questions and, otherwise, I’ll be starting to charge through some of the slide out questions but some questions, particularly for Charlie and his presentation. Let’s look around the … surely, someone’s wanting to ask a controversial question of Charlie. Charlie was being controversial up here. Someone put a controversial question for him. Right up the back – that’s a stretch. I’m not taking that as a question. Anyone? I’m going to look up on the open table and require one. Jenny … good. We’ll just get a microphone so others up the back can hear you. Jenny … thanks Sarah. Find your way around. I’m looking for other questions too. We’ve got about time for three questions.

Jenny

Charlie, when you say you’ve observed that there isn’t good shared decision-making, do you think we tend to err too much on putting it on families or too much on erring on being paternalistic?

Associate Professor C Corke

Well, we do both. We just depend on how we feel. We do both of those things badly and, so, on occasion, you don’t put … you know, so, the doctor can easily put “she needs to go to theatre and I need consent”. That’s the process. That’s not much shared there and, equally, we very frequently say, “what do you want” to the family. So, both of those are shocking and there’s everything in between. So, for me, watching a … what I think is a really good shared decision-making is a rare pleasure. 

Dr J Chesterman

Other questions … I’m going to ask a Slido. We got one here … yup.

Female Speaker 

Charlie, the Refusal of Treatment Certificate – was that a throwaway line or is there actually some data that we can look at about … the uptake?

Associate Professor C Corke

The data. Yes, it’s been very small, the uptake …

Dr J Chesterman

A little over a hundred a year Refusal of Treatment Certificates lodged with VCAT.

Female Speaker 

John, where would we find that data?

Dr J Chesterman

Sorry, where?

Female Speaker

Where do you find the data?

Dr J Chesterman

From VCAT …

Associate Professor C Corke

The law said you had to lodge them with VCAT, so you know, so they’re all collected up and, of course, a number of those are Jehovah’s Witnesses, who use them quite actively but, in terms of, you know, I will not have ventilation, I will not have dialysis it’s very rare and you can see why it’s rare because it’s illogical.

Dr J Chesterman

Also, as people know, a Refusal of Treatment Certificate is in relation to a current condition, not some future condition. Other questions? I’m going to ask a slido question here of Charlie. I’ll get you Charlie’s view on this. This is a very popular question. Where does responsibility lie for the gap in advanced care planning completion in the health care system?

Associate Professor C Corke

Everywhere. It lies everywhere. I would hope that patients can do it and access it directly or people, not patients, people can access it and do it directly. GPs should be fabulous at doing it. It should be so central to what general practice is and does but it doesn’t fit with the timing. It doesn’t fit with the workflow and it’s not got an item number and it just doesn’t really, hasn’t really fitted in. Coming into hospital is the worst time to do it. I think we’ve worked that out. It’s all too confronting. So, it’s always been very difficult to work out. My attitude has been that, like everything, getting a ground swell of demand will make everything else come right. So, again, that’s the reason to write the thing. That’s the reason I do a lot of the stuff I do. To try and get people to understand why they’ve got to do it and, again, I’d go back and if everything integrates together and, you know, Danny’s patients – people outside Flinders Street, you know, it was horrific for me, you know. They haven’t got a clue, have they? 

Dr J Chesterman

Any other questions? A last question from someone in the audience? Right at the back? We’ve got one over here. Just while the microphone comes over, another question from slido – what do you think Joe’s teddy bear is called?

Associate Professor C Corke

[Laughter]

Dr J Chesterman

Don’t answer that. We’ve got a question there?

Female Speaker 

I’m curious why GPs find it so difficult to arrange advanced care plans for their patients and they refer them to the Office of the Public Advocate and they tell them to do it online and then bring it in and they’ll sign it.

Associate Professor C Corke

Well, I don’t know, I’m going to speculate. I mean, I think if I was a GP, I would be worrying that the specialist will think that I’m, you know, that they’re better than me and I’m not really good and that, you know, the idea that the GP is the one who mediates your death is sort of confronting, if you’re in general practice. You want … and you look at the adverts that I have to walk past in the airport. You’ve seen them – your GP, your doctor for life, specialist for life. You know, it’s not saying your specialist for advanced care planning, is it? [Laughter] So, it is a bit confronting. It’s about the fact, you know, I’m here to save and cure and heal you. So, if you layer this stuff on top, it’s hard and then specialists, of course, have it even worse because they’re definitely not in the dying business, you know. So, it’s really hard to actually embed this with doctors. It’s really against exactly what we do – the whole healing, saving, being wonderful stuff is not really sitting very well with this. So, I think the rest, you know, everyone else has to do it and push it on doctors, as opposed to getting doctors to do it and, as far as advanced care plans are concerned, I’ve had a bit … I’ll answer my own question. I have a worry that a lot of this is about the relatives. That the Advanced Care Plan is for the relatives. No, the Advanced Care Plan and the values directive is for the doctor and the relatives. It’s for both of them to look at. It’s not … and to come to choose wisely. So, the whole idea that the doctor wants to impose treatment and the relative needs to give consent and they’re difficult because they won’t and it’s … this is not the model. The model is about how we work together to come up with the best idea, the best thing for the patient in a horrific situation and my final point would be this thing with the doctors - it really upsets me when a patient has an Advanced Care Plan that has a whole load of information in, which you could discuss with the patient because they’re conscious, but in the hospital, we choose to leave it and not look at it until the patient is unconscious and then we query everything in it.

[Laughter]

[Applause]