Think:Health cultivates and articulates the best in health research and news.
The following episode, which aired on Sunday 10 April 2016, features:
- physical and mental health recovery issues after intensive care (01:00);
- new dementia guidelines helping families make end-of-life decisions (11:31); and
- research exploring the factors making indigenous football players successful on the field (20:18).
Academic guests:
- Professor Doug Elliott - Professor of Nursing at the UTS Faculty of Health
- Professor Meera Agar - Professor of Palliative Medicine at the UTS Faculty of Health
- Professor John Evans - Professor of Indigenous Health Education at the UTS Faculty of Health
Host/s:
- Ellen Leabeater, 2ser
- Nina Cobul, 2ser
START OF TRANSCRIPT
Ellen Leabeater: Hi, welcome to the show. I'm Ellen Leabeater. Today, end-of-life decisions in dementia care.
Meera Agar: For something which we know is a progressive illness, then these conversations should start at diagnosis and part of the issue is in - in dementia is making sure that there is a timely diagnosis.
Ellen Leabeater: And why indigenous footy players are making a mark. First on the programme, intensive care can be a traumatic time for people suffering from illness, but does the trauma ease after discharge? People in intensive care are there because they are suffering from a serious medical condition such as lung problems that require a ventilator or recovering from life threatening surgery. Doug Elliott is a Professor of Nursing in the Faculty of Health at UTS. He has been looking at life after intensive care and found that physical and mental health is seriously affected months after discharge.
Doug Elliott: It's really people who have got some degree or organ failure. Often it's about whether or not they need to be - have their breathing supported, so have been intubated and mechanically ventilated. So their respiratory failure is one thing. They may have some cardiovascular failure so they might need some fluids or drugs to maintain their blood pressure. They might have some sepsis so they might have an infection or inflammation that's causing some problems with their other organs, so it's again often there would be some kidney failure. There may be some liver failure there. There may be some issues with their coagulation.
Ellen Leabeater: In intensive care, how long on average are people spending there?
Doug Elliott: It varies. So for people who are - do need breathing support, it's usually four or five days, maybe six days. They may be mechanically ventilated on the breathing support for three or four or five of those days.
Ellen Leabeater: What about when people are ready to be discharged from intensive care? What's the process? What happens next?
Doug Elliott: What's happening with the new structures of intensive cares is they now have a step down area called high dependency and so that it now gives that ability to keep an eye, close monitoring of the patients but to start to take away some of the treatments that have been going on. So they may have their tube taken out of their throat, they may be able to breathe by themselves, they may be still on some fluids but they might start to take out some central venous access lines and so forth.
So it's a staged approach these days so that by the time the patient gets to the general ward, they're much more able to do some things for themselves. In the ICU proper, it's one to one nursing here in Australia. So one person has one staff member. In the high dependency area, it would be a one to two or one to three ratio and in the general wards it could be one to six, one to eight.
Ellen Leabeater: So you're really going from having someone do everything for you to you becoming more independent?
Doug Elliott: Yes, yes. It is changing in terms of our practice. So we're not keeping people fully asleep these days, so completely sedated. We want them to be able to be comfortable and calm but be able to obey our commands as well. So there is a bit more interaction happening now than when I started some years ago.
Ellen Leabeater: When we're talking about that process from being in ICU to eventually being discharged from hospital, what's that time period?
Doug Elliott: It can vary again. So it may be another week, it may be another two weeks, it really depends on what's going on. The way that patients are managed in ICU is that there is an intensive care physician that looks after them, regardless of what their initial admission was. So they might have a surgical team, they might have a medical team, but while they're in ICU, they're managed by the medical physician, the intensivist and the staff around that.
When the patients are discharged to the ward, they then go back to their home team and then they are managed, you know, from a surgical perspective or from a medical perspective. So it really depends on what's then the issue. So obviously if it's someone with a trauma they might have a long limb fracture and so they'd need to be managed from that perspective. So it does vary between medical type patients and surgical type patients and of course it varies if they are an emergency patient compared to an elective patient who may go into ICU for some close monitoring for 24, 48 hours.
Ellen Leabeater: Your research has been looking at what happens to patients once they have left hospital. What sort of challenges do they have once they're out the door?
Doug Elliott: Yeah it's a really interesting space and it - part of it is about how we manage patients from the health service perspective. So the issues that might crop up within ICU and some of the adverse effects about the critical illness or the treatments that we give them to keep them alive may have some effects down the track, but for the most part once they leave the ICU, they then go back to their - as I was saying, their home team, either a medical based or surgical based team. Then of course when they go home from hospital, they've then got their GP looking after them.
So to some extent, not all of those medical teams and the related services around them have a good, clear, comprehensive understanding of what might be some of the issues that those patients might suffer. So we're interested in looking at what the recovery experiences have been like, whether or not there can be some improvement in the time it takes for people to recover to their optimal function.
Ellen Leabeater: Some of the testing you've been doing has been looking at the physical outcomes. What specifically have you been looking at?
Doug Elliott: We've been looking at a range of things. So we've been looking at some of the physical aspects, some of the psychological aspects and more recently some of the cognitive aspects. From a physical aspect perspective, one of the common tests that is used for people who are either recovering from a chronic pulmonary disease or cardiac surgery or cardiac disease is a thing called the six minute walk test. So we use the six minute walk test at home for patients who were recovering from a critical illness to see what their levels of fitness were like over time.
Now that's a sort of an artificial thing because we actually want to know more about how they are able to function in their normal lives. So what's important for them from a physical perspective? Is it to get out in the garden, to be able to bend over and get the weeds out, to plant the new seedlings? Is it about being able to walk down to the shops to pick up the milk or the paper? So it's those sorts of things that we want to try and get to in terms of finding out what's most important for those people.
Ellen Leabeater: What about when we're talking about psychological health?
Doug Elliott: Yeah, so this is again a really interesting space. So we've been using generic quality of life instruments to look at mental health in some patients and there are also obviously some other types of instruments that can be used that focus particularly on things like stress. So it could be either acute stress for what the patients are feeling like when they've been in an ICU and ICU can be a very alien, very stressful place to be.
There are also obviously issues around post-traumatic stress and so post-traumatic stress is more of a chronic issues where they're still feeling signs of stress three or six months after the event.
Ellen Leabeater: So is it the actual event itself, the illness or the condition or is it the - what's happening in the intensive care that's stressing people out?
Doug Elliott: It's really a combination of all of those things. So it's really about the critical illness. It's then about some of the treatments that we've needed to give them to keep them alive that then have an effect on anxiety and depression in particular and also some of the issues around the stressful events that they might remember or they might hallucinate about. So delirium, acute delirium is relatively common in these patients. So we've had some really interesting research where we've wanted to know about the experiences, what they recall from their ICU treatment and some of that is very much around nightmares, hallucinations, things that they were seeing in reality that they then perceived in a completely different way.
Ellen Leabeater: What has your study found when we're talking about the physical and psychological effects of people six months afterwards?
Doug Elliott: Yeah so not everybody has physical or psychological effects. Some people recover really well and so what we're now trying to find out is how could we better screen for particular patients that might have some risk of physical - lack of physical recovery or they might be at risk of some sort of psychological dysfunction six months out from their event. So that's a really interesting space that we are trying to work out what that type of person is.
Ellen Leabeater: So screening is one, getting these different teams to work together well in the hospital. Is there anything else that your research has identified needs to start happening?
Doug Elliott: We've been doing - not just us but across the world there's been lots of observational work around - and so we know that health related quality of life, issues around anxiety, depression, even cognitive ability, is an issue for a certain proportion of patients who survive a critical illness. We don't yet know yet however what interventions are going to work. What should we be doing for these people? That's I think the area that's going to move forward in the next couple of years.
Ellen Leabeater: Doug Elliott, Professor of Nursing in the Faculty of Health at UTS.
[Music]
Ellen Leabeater: You're listening to Think Health on 2SER 107.3, on demand at 2SER.com and on your favourite podcast app. Making decisions about the end of your life is tough. Making those decisions for other people is even tougher. Now imagine how hard it would be if that person had dementia and suddenly you are alone in deciding how their life should be. Last month the National Health and Medical Research Council launched Australia's first comprehensive guidelines for dementia care. Some of the guidelines include better diagnosis tools and more inclusion of families in decision-making, especially in regards to end-of-life decisions.
Nina Cobul spoke with Meera Agar, Professor of Palliative Medicine at the University of Technology Sydney and one of the authors of the guidelines.
Meera Agar: So in dementia, the major issue is that it is predictable that at some point in the course of the illness that the person will have reduced ability to speak for themselves and at some point will have no ability to provide a clear understanding to the people who are caring for them or making decisions for them about what their wishes are.
The challenge is that that can happen though over a long period of time and so care planning that happens in advance has to be revisited as things change and what's more important is that there is a surrogate decision-maker appointed by that person and that the person spends time helping that person understand what their values and wishes are so that there is someone who is able to interpret an individual situation when the time is needed rather than just relying on something that people have written down per se.
Nina Cobul: The first national guidelines have just been released. Do you think the federal government will take those guidelines on board about how people should plan for dementia?
Meera Agar: I think it's an area where consumers, health care professionals and also government is realising it's an area that needs to be improved. Not everyone feels comfortable coming home and sitting around a dining table and saying, let's talk about the situation where I may be unwell or may not be able to make decisions for myself where my life expectancy is limited. We often shy away from having those conversations.
So yes government can put policies in place, health professionals can be better equipped in having those conversations or supporting those conversations but we as individuals also have to be willing to take on those conversations and be part of the process.
Nina Cobul: At what point do the guidelines recommend that people start planning for the future?
Meera Agar: So I think we all should have some general ideas, even if we are not unwell, about what our values and wishes would be that - the general principles that would guide the types of decisions that we make, our values as a person, but then really it - for something which we know is a progressive illness, then these conversations should start at diagnosis and part of the issue in dementia is making sure that there is a timely diagnosis. You can't plan for something where you haven't been clearly explained in a way with proper assessment that that is the diagnosis and this is the particular path that that illness may take.
So there are many people who have cognitive impairment who remain undiagnosed for long periods of time which doesn't allow them to be proactively engaged in the planning process for their care.
Nina Cobul: If someone was to receive a diagnosis for dementia and something that doesn't have a cure, what planning and what decisions need to be made in those initial stages?
Meera Agar: So in the initial stages it's really about that person understanding what particular values and wishes drive their approach to life. It may be about thinking about their financial planning, their income, where they're going to live, who's paying the mortgage, are they providing care for someone else which is another situation that often arises. Then there are decisions around health care which may be decisions around how intensive would they wish treatment to be in the situation where a full recovery wasn't expected, but also where they would like to be cared for, for the majority of their illness and would there be particular situations where those decisions might change.
Then I think the other critical thing is to start thinking about who the best surrogate decision-maker may be and it may not be the same person for all those decisions. There might be someone in your family who is really good at organising the financial aspects whereas someone else who might be much more comfortable taking on maybe some of the health care decisions.
Nina Cobul: How do you choose that person? Because it's such a big responsibility to ask someone to be that decision-maker for you.
Meera Agar: It's a complex decision. I think sometimes people think that it has to be your spouse or it has to be your first born son but it's actually someone who feels confident to take on that role, who feels that they can sit and have those difficult conversations with you and who feels that they are in a position that they would be able to - and feel that they would be able to advocate for your wishes in a situation where that was needed.
Nina Cobul: How steadfast are the plans that people make in those initial stages and if their minds do change in the midst of their illness, is that a factor that needs to be considered later on?
Meera Agar: We would expect people to change their minds and revisiting the - this is not something that you write down once, you put in the cupboard to be pulled out five years down the track. This is about an ongoing conversation and you don't tackle all of these questions and all of these challenges in one conversation.
So it's a very iterative process. People change their mind and the goal really is to provide them with as much information and support to make the right decisions at that time, but also to equip their surrogate decision-maker to understand the principles and the values and wishes underpinning that person's decision-making style and process so that in any individual situation which you can't predict every single one, they can make the best choices for that person at that time.
Nina Cobul: Is there a point at which the surrogate decision-maker is then responsible for all of theirs and how do you determine when that is?
Meera Agar: So it's at the point where someone no longer has capacity, but increasingly we're understanding that for certain decisions it's still possible to involve the person with dementia as much as possible and so shared decision-making and supported decision-making is an area where we need to understand more so that we can involve the person with dementia in those decisions for as long as possible and as much as possible.
Nina Cobul: In questions about life support and your last decisions in life, how do you navigate the complex family politics that can come into play there while maintaining the person's initial wishes when they did make these plans?
Meera Agar: We always ask the question, what do you think your mum might have wanted in this situation? If you ask people what would you like for your mum - it's a slight change in wording but it's putting - making them put themselves in their loved ones' shoes which often changes the thinking and perspective that they make their decisions from.
Nina Cobul: We've now got the national guidelines. What's the next step that needs to happen to ensure that people are getting the right planning done and the right care at the end of their lives and during the course of dementia?
Meera Agar: So there's a lot of good work being undertaken in Australia at the moment around advanced care planning. A lot of that work is being based in hospitals or in residential care. So we're looking at working with some organisations much earlier in the trajectory. So working with people in community organisations and also people who deliver health care at home to see if we can work out strategies to start some of these conversations earlier.
Ellen Leabeater: Meera Agar from UTS speaking with Nina Cobul. Coming up next, what makes indigenous footy players so successful on the field?
Compere: You're listening to Think Health on 2SER 107.3.
Ellen Leabeater: Did you know that Aboriginal people make up 11 to 14 per cent of Australia's rugby league and AFL teams? It's a fantastic achievement, especially considering Aboriginal people only make up three per cent of Australia's population. So what is it about indigenous people that make them so good at footy? John Evans is the Professor of Indigenous Health Education at UTS and is a Wiradjuri man from New South Wales. John spoke to eight Aboriginal players about their childhood to find out the key for success and has discovered three common elements among elite players.
John Evans: The first years they play lots of informal games growing up, so things like they would get together and play games against each other. They would make up their own games and they'd spend a lot of time sort of doing those sorts of things. The second thing we found was that they played lots of different sports. So you would often find that an elite player in rugby league who is indigenous could have also been an elite player in other sports. So you know, it wasn't uncommon for an AFL player to have been an elite rugby league or rugby union player growing up.
The third thing was we found that the guys that came out of our program came from communities where people were really passionate about sport. There was a real investment and they felt also venerated by the sorts of pride that emanated from their success but also on the sort of flipside of that, a lot of them felt that there was a responsibility to repay that at some stage in the future. So those three things along with the sort of the things that they're born with, some of their genetic ability.
Ellen Leabeater: You looked at Aboriginal players and I understand that Aboriginal players have quite a high representative status in football based sports.
John Evans: Yeah, that's right Ellen. It's a good observation. So we know that between 11 and 14 per cent of the elite player population in rugby league and AFL are indigenous and if you look at some statistics also around the current Australia rugby league team, almost half the team is indigenous and you can look at other things like in 2015, both the NRL and AFL grand finals, both best and fairest players in those games were indigenous. So the Norm Smith medal went to Cyril Rioli and in rugby league the Clive Churchill award went to Johnathan Thurston. So Aboriginal players aren't just participating. They're at the very pinnacle of the sport.
Ellen Leabeater: Which is very interesting that they do have such a high participation rate because Aboriginal people only make up three per cent of Australia's general population.
John Evans: Well that's right. So that's what - I guess what makes the study so interesting. Why does this group of people - why do they perform at such a high level now on quite a regular basis? So if you look at the development of both those particular sports [since they’ve] become professional and I guess also too when you look back at history and look at say the things that Nicky Winmar did in 1993 when he started speaking out against racism and I guess both those sports have tried since that point to try and improve their connection with the indigenous community.
I mean we've still got issues in those sports around those particular issues about racism as Adam Goodes has experienced more recently, but the proof is there that Aboriginal people are becoming increasingly successful at those two sports and there's no reason to suggest that that's going to change in the future.
Ellen Leabeater: You mentioned Adam Goodes there and the issue of indigenous people in sport, racism, it is a big one in Australia. Sport is also really big in Australia. Is the fact that more and more indigenous people are being represented at such a high level, do you think that that can help combat some of the racism?
John Evans: Yeah, look I think even though Adam Goodes's case has been well cited in the press and in the media, I think by actually talking about it and 40, 50 years ago, people in the media wouldn't comment on the way they do now. So you've got very sophisticated media people trying to raise it as an issue, you know, people like Waleed Aly for instance, his comment on the Adam Goodes - and you know, really good shows on television such as the Offsiders on the ABC have really contributed to a sophisticated, nuanced debate about sport and have actually helped to create a better understanding about racism.
Ellen Leabeater: Taking a step back to look at your research again, you mentioned that informal sport was quite important in these communities. I kind of think maybe it's a bit different because you think of non-indigenous community…
John Evans: Yeah.
Ellen Leabeater: …where organised sport is really big.
John Evans: So one of the things that we noticed with the guys in this particular study is that they played a lot of what we call informal sports or backyard sports where they would just get together as a group and play games or have contests amongst themselves about a whole range of things. Everything from throwing sticks to the beehive and running away to, you know, [force things back] and British Bulldog and all those sorts of things that a lot of us grew up with but it seems to be in a lot of communities where they don't have access to as much TV or technology, these guys seem to be playing more of it.
So I think that's a really important feature and something that's really hard to replicate in a highly urbanised area. So a lot of kids who go to school in more urbanised areas might end up going to sort of like really formal school development programs either through their sport or through their school and they probably don't develop the same problem solving abilities that kids who are engaged in games all the time and have to work things out every day are, rather than sort of just going through this sort of instructional process about how to be skilful at sport.
I think that's a really big difference between Aboriginal kids who grow up in those sorts of settings to non-Aboriginal kids or even Aboriginal kids that grow up in highly structured environments. So I think there is a really significant difference between the sorts of skills that you develop in those open, contested, really creative environments to ones that are stricter and more formal and more sort of based on instruction.
Ellen Leabeater: Interesting. So we should be getting kids to play more informal settings than organisational structures?
John Evans: Yeah so I think there's two things there. Our schooling system now, if you look at the sort of typical kid, would probably get driven to school in the morning by his parents. Parents probably then pick him up in the afternoon. Their opportunity to walk to school and to play in the park and do the sorts of things that maybe were taken for granted 20 or 30 years ago doesn't happen now. So our job is to get kids out playing, experimenting, trying things and just chasing each other around in the outside would be a big improvement and we know from studies around physical activity that that doesn't happen as much as it should.
Ellen Leabeater: Were these eight case studies also all men?
John Evans: Yes they were.
Ellen Leabeater: What about female participation in these communities?
John Evans: Well look I didn't - my research didn't focus on that. These are some of the things that we'd like to tease out in the next bit of research that I'm doing around what is the role of sport in Aboriginal communities so we're hoping that we'll be able to work with a lot more women and be able to sort of even use women investigators for us to talk to people and just to try and find out what the situation is for women. Because we know just from the ABS data that women, especially as they get older in those teenage years are reluctant to play sport say at the same level as their non-indigenous counterparts or the non-indigenous men.
So if you were to look at the pecking order, it goes non-indigenous men, non-indigenous females and then you get a bit of a shift towards indigenous men and at the bottom you've got indigenous women. So there is a very strong argument there to make sure that we're doing more to - with Aboriginal women, especially young girls, as they transition out of the sort of like primary school years into high school years to encourage them to play sport.
Ellen Leabeater: John, you mentioned at the start of this interview that genetics does have a bit of a role to play. What sort of genetic traits do Aboriginal people have that maybe non-indigenous people don't have?
John Evans: Look, I think there is a big debate in sport, especially amongst all the people interested in looking at skilfulness. Look, genetics does play a part. Obviously if you're going to play a sport that requires lots of speed and repetitive speed, you want someone who's got great sprint ability, they've got great vertical jump, they'll be good in the gym, all those sorts of things, but all those attributes become meaningless unless you've got the right environment to sort of develop the skills that go along with those attributes.
So we often say, if you're sitting on the couch and you've got all these fast twitch fibres and you've got great speed, it's not going to get any better. You're just going to get [unclear] getting between the couch and the television. So there is a need to sort of understand that it's not just genetics. Genetics are obviously a bit part about being really good at sport, but also there's other things that go along with it such as the environment you grow up in, the importance of sport in your family, what sort of opportunities you get to play growing up and what opportunities you get.
Ellen Leabeater: John Evans, Professor of Indigenous Health Education at UTS.
[Music]
Ellen Leabeater: Don't forget, if you'd like to find out more about anything you heard today, you can visit us at 2SER.com/thinkhealth. You can also Tweet us at 2SER. Please remember that journalists are not doctors. If we'd made you ask questions, which is great, go and see your GP. This show is produced with the support of the University of Technology, Sydney, Faculty of Health. I'm Ellen Leabeater. See you next week for more.
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