Palliative care for rural GPs

Chantelle: Welcome to the second webinar of the Rural Health Webinar Series. This is called Palliative Care for Rural GPs and this webinar will be presented by Dr.Aaron Veltre, a palliative care specialist working at both Caboolture and Redcliffe Hospitals, along with a private clinic at Eden Hospital in Cooroy.

We'd like to start with an acknowledgement of country. RACGP would like to acknowledge the traditional owners of the land on which this event is being broadcast and we pay our respects to their Elders past and present. RACGP Rural would also like to thank our sponsor Access Telehealth. Access Telehealth provides GPs with free access to bulk billing specialists who conduct patient appointments via video. They manage the entire process via a secure software platform and have a wide range of specialists available.

We greatly appreciate their support of this webinar series. I'd also like to quickly go over a few tips on using the webinar platform. You should be able to see a control panel like the expanded image on the left hand side of your screen. If you can only see a few icons like the image on the far left, please click on the right app arrow and open up the control panel. The control panel provides you with the tools to select your audio options and is also the place to ask questions during the webinar. Those of you who have logged in will be using the mic and speakers option as shown in the image on the screen. However, if there is any internet issues or if you have a slow connection, please switch to the use telephone option and use the phone number and access codes to listen to the webinar through your phone. Doing this will reduce the bandwidth being used and provide clear audio.

We also have everyone set on mute to ensure that learning will not be disturbed by background noise, but we encourage you to type your questions into the question log on the control panel and will endeavour to have those questions answered for you. Finally, this webinar has been accredited for two category 2 QI&CPD points. In order to gain these points you must be present for the duration of the webinar and complete the evaluation activity that will pop up at the conclusion of the webinar. I'll now hand you over to our presenter Dr Aaron Veltre.

Aaron: Hello everyone. Thanks for joining me on a Thursday evening. It's kind of weird talking to everyone over a webinar. But anyway, it's always useful to gauge people's reactions and get people's feedback. But anyway, I'm also very happy to do this. I'm a former GP myself actually and I did advanced training in palliative care. So, I do have some appreciation of general practice and the difficulties of doing palliative care in general.

This webinar was basically set up after I had a discussion with Jeff Mitchell from the University of Queensland who's a Professor of General Practice there and he talked about the fact that he's done a lot of research. Some of you may have already seen some of his papers, but he did a really interesting paper looking at the role general practice becoming more and more important in terms of end of life care symptoms and control and so I guess it's an area that looking at his Systematic Review from 2002- 2017 there was a very few kind of GP performance kind of assessments of symptom control at end of life. And, so I guess one of the areas of need was to try and look at ways that we could improve people's access and comfort in dealing with end of life care and from his research he found that people had confidence generally towards their increased time in practice, but generally at the start of general practice they didn't really have as much confidence in dealing with end of life care issues. Now, I know there’s obviously lots of people out there who've done end of life care before and are probably very comfortable with doing it. This may be just a revision or some interesting ways of doing things. So I guess I'd like you to keep that in mind and just use this as a bit of an overview of I guess ways to look at the overall spectrum of end of life care in general practice and how we can do that. And so I want to start off by just looking at advanced care planning and then I know a lot of you already do that, but I thought we'd just revisit that and then look a little bit at PCOC or the palliative care collaborative outcome and why that's used and then try and link that to the performance status of people as well as how to use that information about performance status to prognosticate. Then we'll run through some scenarios, so looking at things importantly such as dyspnea which people reportedly said that they were least comfortable with managing in terms of end of life care. Then we'll run through some hints and tips for chronic disease at end of life.

So I'm hoping what you can walk away tonight is at least an ability to think about using Advanced Care Planning documents and when to use them and how to bring them up and then looking at Karnofsky scores as a way to prognosticate and look at patient deterioration. And, then also to possibly explain the some of the uses of medication for end-organ dysfunction and life.

There is a small delay with the transition of the slides so I apologise for that and I'm very impatient! So, just looking at advanced care planning (ACP). I know a lot of you do this already, but this is a little bit of a minefield in some ways because there are such different documents across different locations in the country. So, in different states, we have similar sounding documents with similar names and then we also have different legal implications for different documents and so I just wanted to highlight a few of those and then also talked about the potential benefits for a lot of those.

By the way, I'm really happy for questions. So, please feel free to ask questions. If you want to run through as we're going with questions I'm really happy to try and answer stuff on the fly as well and we’ll try and have some time for questions at the end. So please by all means do. I know this is not the most interactive platform but yeah, please try and um, if you have something pressing you'd like to ask then I'm happy to try and do that on the go as well.

So why does advance care planning actually matter? Because it does ensure patients preferences in conjunction with their beliefs and values.

And, I guess in terms of end of life that is really important. It allows choice and it allows people to avoid the default option which if you get to a hospital system, as you know, is and we end up doing things without necessarily asking or making sure that that is in line with your beliefs and values.

So it does have the potential to reduce future or unwanted intervention and it can also significantly reduce anxiety in terms of family stress and anxiety. And, that's a pretty important component of good end of life care. So, when can we do it and especially in general practice, when do you have a lot of the opportunities to do it? I think you can do it at multiple different points. I think the most important thing though to get comfortable with is just trying to make it as universal as possible.

There was a study done in 2014 looking at the number of advanced care planning documents done and admittedly that study was done by a telephone survey, which looked at when and if people actually had advanced care planning documents and only about 14% of people across the country had any kind of advance health directive and even though the advance health directive has been in circulation for almost 25 years. They're still a very low uptake and I think that's why we need to start looking at ways that we can increase the uptake and increase people using it.

I've got a question here, which has come in. Thank you for that. What is the timing for advanced care planning? Only if we're not surprised our patients will not be alive in 12 months? So, I would suggest that the timing for advanced care planning is to do whenever. So, I don't think that you should be necessarily just focus on when someone's going to die in 12 months or when potentially you're looking at it. I think it should be just like you. I think that everyone should have a will I think everyone should have an advanced care plan. And so I'd encourage people to do it at multiple different stages of their life. I think it's just the same as taking out some kind of insurance policy and you take out an insurance policy not expecting that you're going to get robbed. Not really expecting that you're going to lose an item or have a car crash or anything but it is an insurance policy and so in the same way, I think advance care plans can be useful for that. I think the advantage of being in general practice is that you tend to know family.

So, if you think that someone is going to be offended if you bring that up then maybe there's another in road to do that by bringing it up with a family member and starting to talk about that as a discussion, and it's really these documents as an overall picture really are just ways to have discussions about planning. Now, if you wait to the last 12 months and fair enough, that's one way to do it. But, I think there's lots of scope to be doing this as early as possible and then revisiting it as much as possible so that people do get an opportunity to document their preferences, think about that and potentially even change that if they need to. So, I think other times when you can do it is when a person or family member is asked about that, so I think that's also really helpful. There's another question about what about an ACP and a young patient with a terminal illness. Absolutely. You should definitely try and do that and yes, it is really difficult. And yes, I'm not diminishing that in any way. It's a very difficult conversation. But it's also a conversation that you needs to be had at some point and therefore it can be very helpful to get other family members involved. So I would definitely encourage you to do that. The other question was do advanced care directives need a doctor's signature to be valid? Good question, depending on which document we're talking about. So I'll go through that in a second.

So, ways to talk about this stuff. I think as I said before, I don't think there's any special language you need to be using. I think most of the time as general practitioners you have very good relationships with your patients. Anyway, so what I would suggest you do is make sure that you normalise the process. So the biggest issue here is to try and normalise it and say that when you do it with every patient. And, I'm not necessarily saying that you need to do this because you have a terminal illness or because I'm expecting you to die, but just because I think it's important that we do this.

So I think normalisation you can use those conversation starters, but I think the best way to do it is really just to normalise it for people as much as possible.

I got another question here from someone saying that my experience with advanced care planning is that although they may be done, they don't appear to be closely adhered to in real life, and hospitals tend to make independent decisions. Yeah, really good question. Thank you for that. There's actually a very big study being done at the moment in South Brisbane looking at whether or not people's documented preferences are in line with what actually occurs as an outcome.

And, I think if we're not looking at that in a prospective way and then trying to document that then you're right. There is a there is a big chance that sometimes some of those things aren't very closely adhered to but we are getting better at trying to look at ways that we're ensuring the patient outcomes and patient preferences are matching and I think that's definitely some data that's going to be coming out of South Brisbane in the next little while. So, yeah, definitely watch this space. I think it's something that's really important though.

So in terms of who should be involved. Obviously the person considering their future health care should be really involved and also their family and friends, a substitute decision-maker, a carer, aged care workers, nurses, doctors and other health care professionals can be involved in explaining the documents.

But yeah, ultimately as I said, please look at this as the best way to have a conversation starter because I think that's the most useful role for stuff. So in terms of the two major documents that we're really talking about - the substitute decision-maker and the advance care directive. So whichever state you're in, most of the categories of advanced care planning are broken up into these two categories. So, there is a document that's involved in substitute decision making and then there's obviously advance care directive documents.

In terms of Queensland, for instance, we have what's called the advance health directive and then we also have a statement of choices two, very separate documents. One (the advance health directive) has very rigid legal implications, but doesn't have very good practical implications. So, the statement of choices or statement of values is really the statement that gives you a much better indication of people's preferences and allows you to document your values and beliefs.

So if you are in Queensland, I'd urge you to do that one, even though it's not necessarily as legally binding as the Health Directive in other states. Now, Victoria and in particular has a very good advance care directive documents. They're also called advanced health directives, health direction or advanced personal plans, depending on which state you live in. And, similarly for the enduring power of attorney or substitute decision-maker. We call it enduring power of attorney in Queensland because I'm in Queensland at the moment but in New South Wales, it's called the enduring guardian or so, whichever one it is.

It's basically a decision-maker about health and it's a substitute decision-maker. Now interestingly you do not have to get substitute decision-maker to sign the document to make it legal. You only have to get them nominated. So write down their name on it and then it needs to be signed by a JP and it is a legally binding document. So, even if the person you nominate as the substitute decision-maker doesn't actually sign it at the time, that doesn't mean that it's not a legally binding document.

So I'm not a lawyer and I’m not professing to be one but I think it's also very good to know some of that stuff. So, does it actually work? Well, Professor Joel Rhee who's a GP out of Wollongong looked at a study of advance care planning and looked at an elderly population with multiple comorbidities who visited their GP more than once a month, and what he looked for was trying to work out whether it reduced the unplanned hospital admissions and in the intervention group those who had done advanced care plan reduced their hospital emissions by 20% over six months duration. And in the control group, who hadn't done advance care planning, it actually increased their unplanned admission by 8% and interestingly the intervention group had a 19 percent decrease in emergency presentation. So, in that sense, it's a very good way to ensure that people didn't get an unplanned hospital admission. Also, I think and this is a really nice thing about this document in particular. There was no evidence of any negative impact on the quality of life.

So even though it may have a confronting effect when you first bring it up, it doesn't necessarily cause any harm or negative impact on their quality of life.

So, where are they stored? The person should keep a copy, the substitute decision-maker should keep a copy, a local doctor or specialist can also keep a copy. You can keep copy at residential aged care facilities.

And so yeah, there's lots of different places that it can be kept. Can I please have a link to find the form was one of the questions? Yes. I'm getting there. Absolutely. There's a really good website. Do we need to check the cognitive function before doing ACP was another question. And yes, there is often a separate document that says this person has capacity versus this person doesn't have capacity. So again good question. Do we need to check their cognitive function? Absolutely we do.

If we don't think that they have capacity then they can't necessarily fill out the form but there is a separate form that you can fill out which is either an A or a B document. So the A document indicates they do have capacity for instance and the B document will say if a patient doesn't have capacity. Another question is how to how to do an ACD for a paediatric patient? A mature minor approach will not go very far. I'm not a paediatric pall care doctor. I think there are lots of other people out there who can advise you about that. I agree. It's a very difficult situation, but I can't necessarily give you a whole lot of advice on that at the moment. And, the other question was do not resuscitate or NFR is not part of ACD? And well it is. It is a very big part. You can actually stipulate on your advanced care planning documents that you don't want to be resuscitated. So yes, that is definitely a part of most advanced care planning documents.

So, I think in summary try and be really open and encourage people to do it as much as possible. And then also be ready to have a chat about people's beliefs and values. Obviously. I don't think in general practice you have time to do this all the time and I'm not suggesting everyone does. So by all means please try and get people documents that they can take home with them and then bring back to you for subsequent kind of filling in or explanation or whatever you like, but this is not a one consultation issue. This is multiple consultations. This is multiple chats with family members and important people and I guess yeah, just be ready to try and review them and complete the forms if possible. So that's I think how you can be helpful. This is the link that everyone needs. None of this stuff I made up myself. It is really all off this website. So advancedcareplanning.org.au and you can even call the number 1300 208 582.

That's an amazing resource and please have a look at that when you do have an opportunity. I think it's really helpful. So the next one we're going to talk a little bit about is PCOC and I won’t perseverate on this because I don't think it's necessary in general practice to understand the intricacies of PCOC. But I think what I'm leading towards is trying to understand how we look at how people's function changes. And I think this is a snapshot of the way that we can do this.

So I've got a couple of other questions - under the ACP substitute decision-maker or advance care planning document included either one necessary or both? So under the one document it's a good question. So the question relates to the advance care directives often have a component of substitute decision-maker embedded in them. And, please complete them both. I think it's also very important to complete them both so you don't have to do a separate enduring power of attorney or substitute decision-maker if it's already embedded in that document.

Sometimes they're separate documents and sometimes they're the one document with a substitute decision-maker, so please just complete those as needed making sure that you've done both. I’ve received some other questions. Is there any education on spirituality for GPs to help us guide patients with those problems with end of life? Fantastic question. Thank you for that. I think that's a really important component of this. I actually do run a spirituality seminar or conference with another group of GPs so I can send you links to that at a later date. But yeah, this is not really the forum to do that. I'm sorry.

Oh, and if a substitute decision maker is not appointed who has the authority to make decisions, any legal body? So then if a substitute decision-maker, that's a really good question. Thank you for that. I think if just to clarify, if is substitute decision-maker is not appointed, if you are trying to make a decision about that person's health care and you think that there is some conjecture about that then you need to apply to the guardianship board in order to make decisions about person, so yes, very good question. But yeah obviously it can be a bit tricky at times. So just quickly PCOC is a really interesting way to look at national benchmark standards for pall care. It's useful as a snapshot of clinical information in terms of numbers and it uses three main components for its trajectory. So the first number that it looks at is the phase and so that really just tells you the patient's current need that level of care and then the rug looks at their motor function in conjunction with the activities of daily living and then the AKPS is their performance status and that's the one that we're going to try and focus on and then link to whether or not someone has any kind of indication of prognosis.

I'm getting lots of questions and it says it should have been advanced care planning dot org dot au. I think that's what I did. I did write advance care planning dot org dot au. Yeah, I know I did say dot com dot au but yes anyway if you're looking at the slides, it does say advanced care planning dot org dot au. All good. Any other questions?

Some people don't want ACD and they said ‘I have assigned one person to decide is it enough’. If they have assigned just a substitute decision-maker then yeah sure, that's enough. One question is, after MSK planning can patients still choose CPR? Yes. They can absolutely. There's no way that you can't say that a person has to decide one way or the other. What if a patient has unrealistic goals and planning on going treatment? Well, that's a really good question. If they do have unrealistic goals, then that's going to be really difficult to address and it's going to be several conversations not one. Along the lines of spirituality, are there any references to assist with cultural differences - indigenous Australians, Muslim and Jehovah's Witnesses. Really good question. I don't think there's necessarily any guidelines in terms of that, but I can possibly talk about some of that another time.

How do you respond to the request for your patients who want you as their GP to be a decision maker? I think you need to have multiple conversations with their support person as well and say that you would be happy to be involved but I don't think you can make decisions for them. If someone is very keen for inappropriately aggressive treatment, what do we do? I think that's it's a really important point. And, what do you do is that you necessarily need to keep talking to them and unfortunately, lots of people do feel like they want inappropriate treatment and that is multiple conversations. So, I'm sorry, there's no necessarily easy way to do this. But yes, that's probably the best way so in terms of the PCOC stuff just quickly going back to phases because otherwise I'm going to run out of time. So phase one is stable, phase two is unstable, phase three is deteriorating and phase 4 is potentially going to die within 72 hours.

And so that's a snapshot of what you think is currently happening for that person. And if you go to their rug score, that rug score is a score out of 4 different items. They get a score for bed mobility, a score for toileting, a score for transfers and a score for eating very quickly. The easiest way to kind of think about that is that high scores mean they're more dependent low scores mean they're independent. So, if you had a score of 4 that means you're completely independent. If you have a high score of 18 that means you're pretty much completely dependent. So, we can come back to that anyway.

And, the last thing I want to talk about in terms of the PCOC stuff is the Karnofsky score and I think this is really useful, because especially in terms of general practice it's difficult to prognosticate for people and one of the best prognostic indicators highly, kind of has been shown in lots of different areas of literature that the Karnofsky score is actually a very good indication at low levels of a prognosis and so Karnofsky score was first used in 1948. It was really related to performance status in cancer but the original Karnofsky the way it was scored was 100 was the best possible score you get and then 0 was the worst. Well actually 10 was the worst, but then it was modified multiple times because the original, the way it was originally scored was trying to indicate that potentially once you got below a level of 30 you had to be hospitalised. So, there were several modifications to this and eventually the Australian modification done by David Caro and a group out of out of Adelaide looked at whether or not they needed that recommendation and really it was just as effective without the recommendation. So the Australian modified Karnofsky score really came into effect in the 2000s and is what we use today. So if you look at the numbers, I know this is a really busy slide. I'm sorry, but if you look at the numbers a hundred kind of indicates that you are completely normal, no complaints, no evidence of disease and in the one that I think is really helpful to look at is the score of 40 because the score of 40 indicates that you're pretty much in bed more than 50% of the time and I think that's the biggest delineation that I look at and then obviously 20 your totally bedfast and then 10, you're comatose or barely arousable and zero you're dead.

So in terms of ways to look at why that's useful because effectively it is useful being a low AKPS is very sensitive predictor of poor prognosis and a high AKPS is not very good indicator whatsoever of prognosis. Also, the rate of change in AKPS is probably one of the most useful things that I look at and also is used very widely as to say, okay well, so how were things a month ago? How were things three months ago? And then looking at whether or not things are changing and that rate of change, you can then fast forward to try and look at whether or not that's something that's going to give you some information for prognosis. So it's useful for prognostic information. It's useful because it has really kind of low time cost high yield and I think it can be really done in multiple settings. You can do this in the home. You can do it in hospital. You can do it in a residential aged care facility and it can give you some really useful data, if possible. So putting this all together the PCOC scores and the point of this was to try and look at information on pain and symptom control at end of life for more than 250,000 people who receive pall care over the last decade and with that body of data what they've been able to do is then say, okay, well, this is the information that generally kind of applies to this population and then try and look at whether or not we're meeting benchmarks and also looking at whether or not we're utilising symptom control measures for things that commonly crop up at end of life and with a database of 250,000 people you'd hope that we have some useful information out of that.

So, I thought we'd do a bit of a case now because I think it's always useful to try and put this in context and bear with me, but I think that I will try and get people to maybe respond with some answers if possible. So, we’ve got an 83 year old woman with infected exacerbation of COPD. She lives with her daughter. She's on home oxygen and previously she was self-caring but now she is requiring full assistance with toileting transfers and she's independent with eating and bed mobility and she's in bed or in a chair more than 50% of the day.

So, if we go back to the slide, we can then work out which phase basically her rug is and what AKPS is. So in terms of our phase, does anyone want to hazard a guess? I'll give you a couple of seconds to write a response at the moment. So, just a reminder of the case, she's an 83 year old woman previously self-caring now requiring full assistance with toileting transfers, independent with eating and bed mobility but in the bed or in a chair more than fifty percent of the time. So do people think that she is phase one stable, phase 2 unstable, phase 3 deteriorating.

I'll give you a couple of seconds and maybe someone can hazard a guess. So effectively we are talking about probably a patient who's either in the in the realms of unstable or deteriorating because she's had a sudden change in function. So at that snapshot that's really all we're trying to say. So the answer to the first one will be either phase two or phase 3. Yep. So lots of people said phase 3 deteriorating, phase 3, deteriorating - cool.

Awesome. Okay, so people are getting it and I agree. It could be either two or three, awesome. Well, lots of responses. Thank you. So then the next bit is can we work out her rug and if you go back to that slide on the rug, then we can try and calculate what her rug is knowing that she's independent with eating and bed mobility, but she is now requiring full assistance with toileting and transfers.

So, if we go down to the next slide, so you get one point for independent and we're saying that she's full assistance with toileting transfers assuming that she's only got her daughter there. We’d have to give her 4 points for her toileting and transfer so that’s probably eight points.

So it's three points for limited physical assistance or we can do other than two person assist so she's actually only four and four for each of those and then she's independent with her eating and bed mobility so she gets one point for each of those. So I know someone's going to work out in a second that there are actually four scores and it looks like they're all out of five and that should be 20, but actually the eating is only out of three.

So you get one point for independent, you get two points for limited physical assistance and you get 3 points for dependence for eating and so that eating one is only out of 3. The others are out of 5, so that's why it's actually out of 18. So I'm just going to scroll down. Most people have kind of said 10, which yeah, I think that's you know, that's pretty reasonable. I think that we could probably say that it's somewhere between 10 depending on whether or not we're saying that she has other than two person assist. So yeah, that's really good.

The last thing we're saying is what is her AKPS and then if you can just probably write down some thoughts on what you think her AKPS is knowing that she's in bed more than fifty percent of the time and then the next slide we should have the AKPS table again.

No, not that one.

I'll go down two more. That's it.

I just went too far. So in that AKPS table, you can see as you go across if they're in bed more than 50% of the time then obviously that looks like they're AKPS is 40 and what did people people say, yes 40 awesome. Well done people very good. So just going down to back to the case now.

The next part of this is that two weeks later her daughter calls the practice. She's been discharged from hospital and she doesn't want any further antibiotics. Her mother is now unable to get out of bed and so she calls your practice, the daughter calls the practice and she says that she's now requiring assistance from two people as well. So, she's requiring assistance from two people for any transfers or bed mobility. She's getting increasing shortness of breath. And so now what we are seeing is her change in function. So this is only a matter of two weeks and I guess just to kind of make this a bit simple. It sounds like she's deteriorating or she's kind of unstable anyway, so that's her phase.

Her rug is now she's requiring assistance from two people for any transfers or bed mobility. So, that's a 5 for each of those at least. She's unable to get out of bed. So just in terms of how quickly that's changed. What's her AKPS change?

So I'm just going to try and focus on what her AKPS change is there specifically and if you go if we go back to that AKPS table again, we've gone from a situation where she's in bed 50% of the time to now being in a situation where she is basically in bed all the time and doesn't get out of bed. So her AKPS has dropped from a 40 down to a 20 so she's completely bed fast. And so effectively that means that she’s dying, deteriorating. Yes. she's deteriorating. Excellent.

So people's responses are now somewhere between AKPS has changed to 20. Yeah, absolutely. So she's now down to 20 and I guess the interesting thing about that is it happened in a number of what weeks really and so that change and I guess if we try to use this in terms of how do we use this and apply it in a useful setting we're trying to say that she's now changing in a matter of weeks and if one's talking about prognosis then we need to start thinking, okay, well, if we're talking about prognosis and she's changing functionally in a matter of weeks then potentially she may only have weeks remaining, so really that prognostic information from the AKPS alone is quite useful. The phase and the rug are really just there to add a bit more kind of flavour and also add a bit more kind of valuable information potentially, but it's also yeah just a really good way to snapshot that. And, so other considerations, if we look at the next slide, so her past history is that she's got CKD so she’s got a chronic kidney disease, eGFR is less than 30. She's also got paroxysmal AF and she's on apixaban because she should be on that for better kidney function apparently according to General Physicians and she's also on a statin and so I guess some of the considerations we should be thinking about at these points are that this woman's changing in a matter of weeks. Someone wrote that she should be on opiates, very good. I agree. So I think we should be thinking about what sort of opiates we should get her on, we should be thinking about what sort of ways we can improve her shortness of breath in particular because she is short of breath. She's increasingly short of breath and this is now her main symptom as she's approaching end of life. Someone else said that she should be on opiates and benzos with no more regular meds. Some said she should stop the statin.

I said yes, I totally agree cease the statin fantastic. I’m liking this people well done and then she's already on home oxygen. So we probably don't necessarily need to address that but was that a question or a statement? I'm not sure but I think the way that we're looking at this then are also thinking about non-pharmacological management of her short as a breath. So, other things that we can do? Can be putting a pedestal fan in front of her, can we talk about positioning in the bed for her because all these things can be really helpful in addition to the medication management. One of the things I will say about her medication management of that is in particular with an EGFR of less than 30. Someone did write morphine there. Look I get a little bit uncomfortable using each using morphine with an EGFR of less than 30. I think if you're going to use something, please think about route of administration first. If she's still able to swallow then obviously oral liquid either oxygen or liquid hydromorphone could be very helpful because if she can still swallow that would be good. Otherwise, think about other routes of administration. People use patches in general practice a lot. That's very helpful, but it's also very difficult to titrate and so sub cuts can be useful, liquid can be useful and so just think about different ways that you can get this into people especially medication for management of shortness of breath and anxiety. I think benzos which was already mentioned and in particular, I’d be trying to think about using Sublingual Lorazepam. We use lorazepam a lot and I think it's a really good way of trying to get people's shortness of breath treated, it also treats anxiety, which is also really helpful and the next one of the questions was what about apixaban? Should that be stopped? And I think that's always a really tricky one. I think that's something that you need to negotiate with the patient, talk to them about the risks and benefits of that.

But obviously you know if there is any indication that she's bleeding then I would stop it straight away. Hydromorphone can be used. You're right. Fentanyl can be used and stop the apixaban is the other question. So yes, all those are correct. I think the kind of take home things though from this if you're looking at that just is as this list in terms of the take home stuff I'd like you to think about are low dose of opiates are really beneficial for dyspnoea. So, please think about short acting as well as long acting opiates. Even if you're starting off on low dose either oxycodone or in this case, if she's got an eGFR of less than 30, then you should either be thinking about low dose oxy or low dose hydro or trying to avoid morphine at all.

If possible, it’s probably the best option just because we're trying to avoid anything that's going to necessarily precipitate her death even more. So, I try to avoid using morphine in eGFR less than 30, some people are very comfortable up to about kind of 20, but I'd suggest you don't. I think there's lots of other opiates on the market and we can use those.

I think that using fentanyl hydromorphone is really helpful for eGFR less than 10 and then please think about using lorazepam for dyspnoea and also don't forget about the non-pharmacological options for dyspnoea because obviously it's very important to think about those as well. Just simple things like fans and stuff can be very useful. The recommended dose. The Lorazepam was a question. Yes, the recommended dose will be starting at 0.5 milligrams. Sublingually. It's not a tablet you swallow sublingual. So also think about whether or not someone's going to have enough saliva to be able to have that under their tongue and still absorb it. If you can then I'd probably use point five milligrams BD to begin with or just start it at night. So people get used to it.

It'll take a couple of days and then you can pretty much use it every four hours if needed but 0.5 milligrams to begin with especially in someone who's benzo naive and then in someone who's got a bit more benzo tolerance, you can increase that to 1 milligram depending on how things go. So dyspnea is a really important one. We’ll do one more case I think we should have time for this plus some questions.

So this is a 58 year old man with chronic liver disease, Child Pugh C cirrhosis secondary to alcohol use. He’s also got past issues of chronic pain, lives alone, and wants end-of-life care at home. His friend visits daily to help with his care. His friend lives 50 meters down the street and says he's very happy to be around as much as possible and then he reports increased lethargy and increasing difficulty with mobility and that he is spending less than half a day in bed.

So does anyone have any kind of idea about what we're talking in terms of? Let's just focus on his Karnofsky score at the moment because we are a little stretched for time. So maybe let's just look at that. Is there any thoughts on what he's Karnofsky is, roughly?

So yeah, 50, 60 I'm getting - yeah, I think that's pretty right. I don't think you can necessarily, he can do most things himself but he's not spending time yeah, 50, 60 is great. So perfect. There was some question about the fact that is it realistic that he might not be able to have end-of-life care at home? Yes, very good question. But yeah, we'll get to that. So yes, I think everyone got that pretty well. His AKBS is around about that somewhere between 50 and 60 depending on what we’re kind of looking at and we'd need a bit more information. But yeah, well everyone's got the idea very well.

So eight weeks later you receive a call from the friend who's very diligently being going there at least once a day. He's now completely bed bound. The community nursing team have already been contacted because he's got a very diligent GP who's linked into the community nursing support service. They're coming in three times a week. He's also reporting increased pain and nausea.

He's refusing any further intervention for reversible conditions and his friend has now started to notice. This is a very good friend who's good at understanding medical conditions - who notices that he is slightly more confused than he has been. So, now I guess what are we saying is he is completely bed bound. His AKPS has dropped significantly. Someone has sent through a message to say that his AKBS has dropped to 20. Yes. That's pretty much where it's gone.

So, in a matter of two months if you look at what's been happening to him in that in that period, his AKBS has dropped from 50 or 60 down to 20 and that that's a pretty significant change in terms of function being completely bed bound now in that 8 week period. Some of the issues I guess now become what you were alluding to before and what someone who asked that question was, and now what do we do in terms of what are some of the considerations. He’s got a pretty fast rate of change of his AKPS and he's got increased pain. He's possibly constipated and encephalopathic. Has he done any advance care planning? Is this friend his actual enduring power of attorney or substitute decision-maker? Or is it just some neighbour who he has known for ages who doesn't really have any kind of involvement in his care, and does he have some family underlying somewhere who are involved with his care and haven't come out of the woodwork and have been allocated decision makers? So all this stuff is really tricky to try and work out in a very short space of time. But, some of the issues that I think that we need to think about are obviously he's deteriorating, we've already covered that. The rate of change is quick. He's got increased pain and he's currently on tagin 10/5. He's still able to swallow tablets at this stage. Anyone got any thoughts on whether or not he should still be on targin given that he has chronic liver disease and then his nausea medications? He was seen in ED one day and as is the want of some hospitals we tend to give out ondansetron like lollies these days and he was given ondansetron as well and he also is constipated and he's currently only taking coloxyl and senna. So, really good answers to most of those questions. Yes, I agree. Tajin is contraindicated. Yes. Most people are saying targin should have been stopped, switch to oxycontin. Fantastic very good. And I think in terms of the nausea people are already saying one answer, haloperidol for nausea, absolutely and lactulose for constipation. Absolutely. So all those all those answers are really appropriate. I think yeah. Well done. I think you could potentially look at changing into oxy. I think. Yep, the main issue with him being constipated is ondansetron is constipating which most people have already said, so that's great.

So my options for nausea are pretty much haloperidol 0.5-1 milligrams. You can do it orally you can do it subcut whichever way you like. I think getting him onto just straight oxycontin would be helpful and then you can chase him with just straight oxycodone short-acting and see whether or not that's actually helpful. The usual story is that the breakthrough will be able to tell you whether or not it's helping him. So if he's using short-acting oxycodone along with a background of oxycontin and he's getting good relief with it, then you can be safe in thinking that you can titrate it up.

If he's getting no relief with the short-acting oxycodone, then you might want to think about changing to something else and I think that's pretty much what we tend to do to make sure that we're getting a reasonable effect. With the constipation I think lactulose was already mentioned and I think he really does need some lactulose as well as generally we use kind of a tiered approach of using dulcolax as well as coloxyl and senna and then movical which people have already mentioned. And yes, I'd agree. There are lots of different ways to manage this guy but we've got lots of issues that crop up and I think this is not necessarily unusual in terms of what to expect from a person with a chronic disease or with a condition like his. So, some of the considerations we have to think about: opiate choice, aperient use, anti-emetic choice, whether or not he has capacity because does he have capacity now at the moment and does he have a default decision maker? Or is that a person that he's now disconnected from based on the fact that he's probably being very socially isolated. I am stereotyping here and I apologize. In this case I've seen a lot of people and generally in a case of chronic substance use, there is a lot of social isolation and therefore often those default decision makers may have been made in the past and they're not actually apparent at the moment because they've had some sort of disconnection. And then lastly but most importantly, what is the safest place of care for him? And, I think the reality is that you know, he really needs to be in the safest place of caring. Kathy Eager has done a really interesting study looking at place of care, especially pertaining to people who have strong connections to their land, so in regional areas of Australia. Kathy Eager looked at whether or not people nominated their place care as their as their home for their end-of-life care versus hospital and what she actually found was despite people having very strong attachments to their house and to their land and to where they live, once it got to their end-of-life care it really didn't matter in terms of their place or location of care. What mattered most was the safety of them and the safety of the family and carers looking after them. So most of this stuff really becomes about what is the safest place of care as opposed to what is the location of care and I think sometimes we miss that when we talk about how do we get to looking at you know, what is the best option of trying to keep people at home? So yeah in summary avoid targin as everyone said, avoid ondansetron, always think about aperients, revisit ACP documentation and consult with a local hospital and consider a community pall care link.

If not, you know, if you're not as comfortable at doing that. So in terms of the symptoms at end-of-life, just quickly we’ve only got a couple of minutes left. Most of this stuff was based on a big database of information gathered over the last 10 years. And these are the main kind of symptoms for people that crop up: so fatigue obviously at the start of the end of life care journey versus their last kind of days of life, fatigue is improved slightly. Pain is improved pretty reasonably significantly, appetite is has some effect as well. Obviously, it kind of drops. We don't necessarily have any improvement in that.

Breathing is also a big problem in end-of-life. Bowels. Insomnia. Nausea. I think the other one that's really big in terms of symptom there is anxiety. And, I think anxiety is coupled up in amongst pain as well as in amongst breathing, and so anxiety definitely is coupled up in amongst those. That’s not captured probably as well as it should be but just quickly in terms of some of the things that we can do for that. I think we can definitely have an impact on fatigue by saying that everyone who hasn't had steroids deserves a trial of steroids and I think it's always good to consider dexamethasone for that. Pain. Obviously, there's opiates and a whole host of adjuvants that we haven't covered and we don't really have time to cover today. But, I know I think are really important to consider as well. You can always use dex to improve appetite for short periods of time. It's not going to do much in the long term but it’s good. Breathing, definitely consider low dose opiates and benzos. Obviously the bowels, consider dulcolax, coloxyl or movicol. You can use benzos for insomnia and definitely use metoclopramide or haloperidol as your first ports of call for nausea.

So, in summary, I think there's a lot of stuff that we've covered and I'm sorry it's been a little bit rushed. But, in summary, I think it's really important to keep thinking about end-of-life care advanced care planning documents for all your patients. Don't limit it to just people you think who are going to be end of life in the in the next little while. Please consider the rate of functional change is important when discussing prognosis and also, please consider medication based on end-organ effect in chronic disease. Because, as much as yes, there is a line, and, as someone said - where do we draw the line? We draw the line at trying to improve someone symptoms and not necessarily precipitate their death.

So we're all about trying to improve their symptoms and treat their symptoms as much as possible, but we're not necessarily trying to expedite their death. So, if we can avoid using things that we know are going to have an effect on the end organs, then we let their body kind of take that journey and we don't necessarily have to impact that as much. Also I think please try and call, you know, whoever is around and I know that people are in all parts of the country and that's really hard and really easy for me to say when I live in an urban environment, but I have worked as a general practitioner in all sorts of regional and remote places and I locumed for six years, so I do have some appreciation of some of the complexities of access to care. And, so I think being able to have a number to call or call someone at the base hospital, call someone that you can get advice from is really helpful. So, I'm always happy to chat. I'm on call every third week. So yeah, if you do want to talk to someone especially here in Queensland then give us a call if you need to. Just a couple of questions so I might leave it there for now and I'll take some questions.

I've got a couple on thoughts on steroids and delirium and end-of-life. Yes. That's a really good question. And yes, it can exacerbate delirium. But if it does then I would reduce it slowly and stop it. I think coming off steroids suddenly is also a bad idea. So I always try and wean it as much as possible to the lowest kind of dose, usually 0.5 milligrams for a couple of days and then stop it.

What dose of dex is recommended for fatigue? While I think if you’re trying someone on 4 milligrams of dexamethasone, it's roughly 1 to 7 conversion for prednisone. So, it's roughly around about 30 milligrams of pred. So I think 4 milligrams. If it's going to do anything it's going to you might as well start at 4. If it does nothing then it's not really going to do anything at 8.

The question was I'm sorry I missed out on why we should use maxalon rather than zofran. Sorry. You have to repeat it. I think just ondansetron is really just constipating and so in a person that we're using something like ondansetron we were worried about constipation. We're already giving them opiates. I think it's really helpful to avoid using something like ondansetron because it's going to constipate them more. So maxalon or haloperidol won't constipate them and definitely yeah, I think try to avoid that.

Apart from CKD end-stage liver disease, what other clinical situations when we should change an opioid? So I think, look that's a really good question. It's always tricky looking at different end organ function and trying to work those out. But, predominantly I guess, the opioids, the two biggest ones are chronic kidney disease and then end stage liver disease. That's why I chose those cases. I think it's always helpful to try and look at those because they're the most common ones. Look I think if you're changing an opiate you really need to justify that change based on whether or not the short-acting opiate is working. If the short-acting opiate is not working then please have a think about whether or not to you should be rotating the opioids.

Is haloperidol available on the PBS for vomiting? That's a really good question. It is listed as 0.5 and we use it all the time for vomiting, but I'm not sure if one of the distinct indications on the PBS is for vomiting, so I'm going to leave that to a more clever person.

Can the substitute decision-maker change the decision? That's a really good question and I think the substitute decision-maker is really given the authority to try and make a decision in line with the person's wishes. Now in theory, that should be a very simple scenario but in practice, that's a really tricky thing and often when there will be one family member, and all families are pretty crazy. Mines pretty crazy along with everyone. So, there is usually one person who is the loudest person in that situation and if they happen to be the substitute decision-maker then yes, potentially they can change the decision of that person because that person has allocated them as the substitute decision maker to make decisions for them if they are not able to. So unfortunately as much as you can talk to them about that, potentially they do have the ability to say this is the decision I would like to go with and then you have to then run the argument of, is this in the best interest of the patient, and how can we protect ourselves in amongst the health service to make sure that we're doing right by the patient and not necessarily increasing their risk of harm, even if the enduring power of attorney or the substitute decision-maker wants to do that.

The other questions are: with family members or children, can they argue about the plan given? Yes, they can and they often do. I think they are very commonly involved in decisions. And, that's why I think it's really important to plan for this stuff and make sure that families are involved in end of life care planning because otherwise there is no doubt there is someone who's going to come out and say well, I don't agree. I know what mom would want.

I know her better than you do and that's a really important point as to why we do this at the start to alleviate anxiety and stress.

Does the AKPS apply to paediatric palliative care patients or only adults? It applies as far as I know – again - I'm not a paediatric palliative care specialist and I don't really have any experience in dealing with paediatric patients. It is a very separate subspecialty. However, I think they AKPS could be modified and you may speak to Anthony Herbert.

I'd get him on Twitter actually and I think he's Anthony Herbert is the local guy in Queensland who knows everything about paediatric pall care. He is a paediatric palliative care specialist and he can probably help you out with that. But it's a really good question. I might tweet that to him myself actually. But yeah, thanks for the question. Are there any other questions?

Chantelle: Great. Well, that seems to be most of the questions answered there. So thank you Aaron and thank you everyone for attending this evening. So just a reminder to the participants to complete the evaluation form that will pop up in a new window in just a moment once the webinar session closes. This will take no more than a minute to complete and then certificates of attendance will also be available on your QI and CPD statements within the next few days. For any non-RACGP members who would like a certificate of attendance, please email rural@racg.org.au. So thank you everyone and good night. Thanks.