We talk to a specialist who is bridging the gap between Oncology and Palliative Care. Plus, we find out about the rapid response system saving lives in Australia. But it isn’t perfect. Also on the show, we find out why some Liver Cirrhosis patients aren’t taking their medication.

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Presenter/Producer: Ninah Kopel
Producer: Sam King

Speakers:
Suzanne Sheppard-Law, Senior Research Fellow in the Faculty of Health at the University of Technology Sydney
Dr David Hui, Assistant Professor in the Division of Cancer Medicine, The University of Texas MD Anderson Cancer Center
John Rihari-Thomas, PHD Candidate in the Faculty of Health at the University of Technology Sydney

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Ninah Kopel: Hello, I’m Ninah Kopel. Welcome to the show. Today we look at oncology and palliative care in cancer. Can the two work together? And what happens when rapid response isn’t rapid enough?

John Rihari-Thomas: Four years ago now I was involved in a fight where I was attacked. I lost the sight in my right eye. I was sent to hospital and it was 24 hours before I received the surgery to reconstruct my eye.

Ninah Kopel: But first, liver cirrhosis is a dangerous condition, but drugs are available to reverse or slow the disease. At the very least, they can help manage symptoms. Suzanne Sheppard-Law is a Senior Research Fellow at the Faculty of Health at the University of Technology Sydney. She’s also a researcher in this area and says that over half of the cirrhosis patients surveyed said that they’d missed a dose. Producer Sam King found out more about her research.

Suzanne Sheppard-Law: So we found that people often forgot to take their medications. For some of these people, it was because they weren’t at home, they were staying with somebody else, and we also found that it was related to their level of cirrhosis, so their quality of life and how it was affected. They’re the key findings for that particular group. There were some people who were very religious and just never missed their medication and there were others that missed occasionally and they were probably more non-intentional or accidental misses, and then there were people who deliberately missed their medication. And for some of those people, that was managing their side effects. So they had to take a particular medication that often had a side effect of causing diarrhoea, so to manage their diarrhoea they would cut back on that particular medication.

Sam King: If you prescribe pills to combat that, you’ve got pills that are counteracting different effects and then it sort of builds up doesn’t it.

Suzanne Sheppard-Law: Absolutely. It does. And that’s where it’s particularly challenging with that particular group because if they start managing or self-managing their medication to manage their side effects, then that often precipitates a relapse in their disease or a relapse in other symptoms.

Sam King: What are some of the factors that lead to patients not adhering to their medications schedules?

Suzanne Sheppard-Law: So when I first started doing research in this field, I completely underestimated the complexity of medication adherence. It’s not just taking a tablet. There’s lots of literature out there for chronic diseases and acute diseases as well which show that there’s an interplay between so many different factors. So they’re factors such as demographics, health system factors, individual factors, disease-related factors, socio-economic factors and the treatment itself. So there’s an interplay and it’s all specific to each disease and then again specific to the individual.

Sam King: Why is it so important to stick to your medication, especially with a condition like cirrhosis?

Suzanne Sheppard-Law: Medications are actually part of several different strategies which keep people healthy and keep them functioning. It probably retards their disease – it doesn’t stop but it certainly can retard the disease process or retard the symptoms and make them more functional as an individual but also within their family. Once the symptoms start to present, if they’re not managed well, then the patient deteriorates quite quickly. And sometimes that could be quite significant. So if they miss a particular syrup which is called lactulose or a medication called rifampicin, then they become encephalopathic – that means they can progress to being comatose. So that’s quite significant and they end up in hospital.

Sam King: It’s safe to say that it’s very beneficial to stay on the medications…

Suzanne Sheppard-Law: Absolutely, definitely. So you either retard the disease process or you reverse the process, so it is incredibly beneficial to the patients.

Sam King: I’m curious – you were talking about how there was very little literature on this issue. Why do you think that is?

Suzanne Sheppard-Law: So there’s little literature in liver disease…

Sam King: Really?

Suzanne Sheppard-Law: Yeah, so if you look in oncology, there’s a lot of literature around medication. Also with some respiratory diseases there’s quite a lot. HIV – there’s a plethora of literature because it’s been going for 20-30 years and the treatments are just so amazing at improving people’s quality of life, so it’s important that they don’t miss not just to manage the disease, but in HIV, the context is that they can develop resistance, and similarly in (unclear) hepatitis they can develop similar resistance.

Sam King: What are some of the other diseases that have specifically low rates of medication adherence in your experience? You were talking about hepatitis earlier?

Suzanne Sheppard-Law: Yes, so my PhD study was looking at Hepatitis B. Again, there was no literature describing what happened in that particular cohort of patients. Hep B is one tablet a day, so it’s a fairly easy regime to follow. Quantitative data showed that people who had an established routine were six times more likely to be adherent to medication compared to those who didn’t have a set routine, and health literacy was the other predictive factor. Also, ease of access – so being able to access the clinic and access the pharmacy to be able to pick up the medication. And again, health literacy ties into that. So if your health literacy is quite low, it’s actually difficult to navigate a healthcare system- to walk into a hospital, read the signs, know where to go and to advocate for yourself.

Sam King: In a perfect world, what would you like to see happen? What would you do if you were supreme commander of the Australian healthcare system?

Suzanne Sheppard-Law: I think that patients – all patients benefit from face to face pre-treatment counselling with nurse or other clinicians who can talk to them about what the medication is, what it’s for, what are the benefits, what are the risks… But then also, there’s a need to discuss a routine. So what routine is going to work for that particular person on the basis of their busy life? What are their other commitments? Because, the reality is, life gets in the way. Other strategies to touch on would be things like having Webster packs or pill packs. People who have chronic diseases with multiple medications may well benefit by having a Webster pack.

Sam King: Which, for the layperson is a plastic grid with Monday, Tuesday, Wednesday etcetera and all your pills in it, making it nice and easy.

Suzanne Sheppard-Law: Yeah, and for some of the elderly people who may be starting to get a little bit forgetful, often the pharmacies will set up the pill box for them. Because it can be quite confusing if they’ve got multiple pills to take, and that’s an incredibly great service to have the pharmacies set the pills up so they know morning tablets, Monday lunchtime tablets and so forth.

Sam King: That’s actually my job outside of this…

Suzanne Sheppard-Law: Oh! So you would know heaps about it then!

Sam King: Oh well, yeah…but you’re right, it’s incredible. It really helps people.

Suzanne Sheppard-Law: I think empowering patients is also a really important thing, and that comes back to what I was saying about a routine. This has to be their decision about how to take their medication and if they’re ready to take medication, because, at the end of the day, it is their decision. They may choose to say yes in a clinical setting – yes, I will take my medication. But at the end of the day, it’s there decision and we have to respect that, so having them part of the decision making and having them actively engaged as opposed to passively engaged I think is really incredibly powerful for the patient, also encouraging them to buy into medication adherence.

Sam King: Sue Sheppard-Law, Senior Research Fellow at the University of Technology Sydney in the Faculty of Health.

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Ninah Kopel: When it comes to cancer, oncologists are responsible for the medical, surgical and radiation treatment of their patients. But there are also palliative care experts to help them with the psychological experience of cancer, to help with symptom management and support. But the two don’t always tie in perfectly together. Dr David Hui is one of the exceptions to this. As both a practicing palliative care specialist and medical oncologist, he’s working to integrate the two areas. He’s an Assistant Professor at the University of Texas MD Anderson Cancer Centre. I caught up with him after his presentation at the University of Technology Sydney’s Faculty of Health.

David Hui: With cancer, palliative care has been shown to help patients do better in terms of the quality of life and the symptom burden, and at the same time, not enough patients are getting access to palliative care these days, and if they do see a palliative care team, often it’s late in the disease trajectory.

Ninah Kopel: That surprises me, because you’d think that something like cancer which does have a high mortality rate – it would be something that was happening more often.

David Hui: I think there’s still a lot of stigma about palliative care, but I think society is changing and the evidence – the scientific evidence – is also changing is well. We used to think that palliative care is only applicable for patients close to the end of life. But now we know when patients are seeing palliative care teams even as early as around the time of the cancer diagnosis, they do much better, in fact when they see the specialist earlier as compared to those who are only seeing them in the last weeks or months of life, those patients tend to be the ones who benefit the most.

Ninah Kopel: So something you brought up today in your talk was this word “palli-phobic” Is that right?

David Hui: Yes, palli-phobic.

Ninah Kopel: What does that mean and what’s actually happening there with oncologists?

David Hui: Yeah, so, it’s a term that we’ve just come up with that’s “palli” – palliative – and “phobic” – phobia, meaning afraid of. People just hear palliative care and they think death and dying. As they start to understand what palliative care can help with, there’s a shift towards what I call a more “palli-philic” attitude. “Philia” means “like”. So there’s definitely a shift as people become more and more comfortable with what palliative care can offer for patients, whether it’s oncologists or care-givers or patients themselves, they are much more likely to be seeing palliative care earlier and more frequently to receive the benefits associated with this intervention.

Ninah Kopel: What is your research telling you about when people are being referred to palliative care? Is it happening in those early stages?

David Hui: I think this is changing – maybe 30-50% of patients see some sort of palliative care before they die a few years ago, but now it’s shifting to 50-60% depending on the centre and the region. So I think definitely more and more people are being referred and that is wonderful, but that means that there’s still a proportion of patients who don’t get to receive their palliative care benefits and that’s an area where we can work on that further.

Ninah Kopel: So you’re a specialist in both oncology and palliative care. What is the benefits of that and are there enough people like you?

David Hui: This is also rapidly evolving. I think we are seeing more and more specialists who are dually trained in this and having these individuals can be helpful because they can catalyse the research in the interface between oncology and palliative care, they can provide palliative care and oncology care for patients at the same time, and also they can be good educators and ambassadors to train the next generation of oncologists and palliative care specialists to be more aware of the principles of palliative care. So I think we’ll be seeing more and more of that around the world as well as in Australia.

Ninah Kopel: Obviously there are just palliative care specialists, so how do you decide when a person should be going to a singular specialist versus someone who has both skills?

David Hui: Well, I wouldn’t say at this time that patients need to worry too much about that. I would say that even the fact that they’re seeing a palliative care specialist is fantastic. You know, of course all of the cancer patients I imagine would already be seeing an oncologist. I would say start a conversation with the oncologist and say “Well, I heard that there was a palliative care team and they can actually help me deal with my symptoms and help with my quality of life and maybe even get me stronger so I can tolerate treatments better.” There are very few palliative oncologist, and I see that any palliative care specialist working in a team environment would be able to provide great care, regardless of whether they are just palliative care specialists or palliative oncologists.

Ninah Kopel: Is there a big difference between countries, between, say, the States where you’re from and Australia? Are there big differences in the way we perceive palliative care and the way it should be happening?

David Hui: Well, talking to my colleagues in Australia, I think to a certain extent that there are a lot of similarities – that palliative care is still associated with some stigma. I think in the States, because of the research, there’s been a big push to see patients earlier and earlier, and that is also happening in Australia, so I think the two continents have a lot of similarities in a way. And of course, the healthcare system is very different, but I think the fundamental thing for cancer patients is that they often have many different symptoms, including feeling quite distressed during the cancer journey. And they have a lot of information needs. Those are fundamental core needs regardless of where they live.

Ninah Kopel: And is there a big difference between different types of cancer and how palliative care is delivered with those patients?

David Hui: Yeah. What we found in our studies along with others is that patients, for example those with hematologic malignancies –

Ninah Kopel: Can you explain what that is?

David Hui: Leukemia or lymphoma or multiple myeloma – those patients…they tend to receive less palliative care. I guess the question is why is that? Oftentimes it’s related to the oncologist who is seeing those patients. Those oncologists often tend to be less comfortable with palliative care. They often see themselves as being very important to how the patient gets rid of the cancer as much as possible and they have a very strong relationship with them and do not want to kind of take away hope from those individuals. So I think even with that though, it’s a shifting paradigm because you’re starting to see even with patients with hematologic malignancies – the liquid tumour individuals… when palliative care is introduced to them earlier, they may also do better as well. So I think with that we will see even those patients receiving greater access to palliative care over time. So it’s a lot of education of the patients and families but also the oncologists have got to be on board as well.

Ninah Kopel: It’s really just getting rid of the fear around that word “palliative” right? Stopping people from think that it’s a death sentence.

David Hui: Well, I think that is a very true thing. I think the stigma is one major barrier. There are other barriers such as with healthcare resources. You know, even if the oncologist wants to refer, if the palliative care program is not well staffed enough, it may be hard for patients to get access to it, so that would be another potential challenge and that’s why we always need more resources as well in this very resource-limited world to support the palliative care programs. And you know, some oncologists feel very strongly that they should be the ones providing the care, because they actually enjoy doing it and they feel that they can do a great job and I think that would be wonderful. So it’s not always true that they have to see a specialist palliative care team, but most of the time when the patient has beyond the basic need, it would be great if they receive specialist palliative care referral.

Ninah Kopel: Dr David Hui, practicing palliative care specialist and medical oncologist at the University of Texas MD and Anderson Cancer Centre.

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Ninah Kopel: You know that part in hospital dramas where the patient flat lines. The heart monitor wails and you watch as the doctors panic and rush to the bed side. Of course, that’s real – it happens in hospitals all the time. But how do doctors actually know what’s going on? Well, it comes down to a rapid response system, and Australia has been a leader in refining them since the late 90s, but they aren’t perfect. Producer Sam King spoke with John Rihari-Thomas, a PhD candidate at the University of Technology Sydney, Faculty of Health.

John Rihari-Thomas: Rapid response systems were developed primarily to pick up deteriorating patients early with the overall goal of preventing adverse clinical events such as cardiac arrests and unplanned admissions back to ICU from patients that are already on the ward. So these were the patients that were actually already in hospital on a ward, but going unnoticed as they deteriorated.

Sam King: OK, so how does it work? Is there a main sort of database that monitors all the different machines hooked up to each patient?

John Rihari-Thomas: There are those kinds of systems around. Unfortunately they’re expensive, so most hospitals don’t have them. So, they rely basically on the observations of nurses really because they spend the most time with the patients, but also medical staff and allied health staff being able to detect minor changes in the patient’s clinical status, especially through… we use a lot of vital signs charts to be able to do that as well, so changes in blood pressures, heart rates, oxygen saturations, urine outputs – we put all these things together.

Sam King: Can you walk me through what happens when things go wrong, step-by-step?

John Rihari-Thomas: With the patient or with the system?

Sam King: With the patient. Well, we’ll start with the patient.

John Rihari-Thomas: Yeah, sure. The population in hospitals has changed quite dramatically over the last 20-30 years and the patients we used to see in our intensive care and coronary care units are now sitting on the general wards. The more well patients are dealt with just with day surgeries and they’re also treated in the community, so the acuity of the patients or the sickness of the patients in our hospitals is a lot higher than it’s ever been before. When you couple that with skill mix of the clinicians looking after the patients, as well as resourcing and not having enough doctors and nurses – they’re kind of situations that lead to undetected deterioration of the patient. So, it’s not always dramatic, and sometimes it’s over a period of 8 – 72 hours, so it’s not something that you could pick up straight away. And unless you’re measuring the trends in those vital signs, you may actually miss it, which is what’s been happening over the past 10-15 years. And it’s globally, not just in Australia.

Sam King: So what are the weakest links in the system?

John Rihari-Thomas: the weakest links are obviously not escalating or still not picking them up – If you do record those vital signs into those zones and don’t escalate appropriately to the right level, still not realising that the patient is deteriorating…And that’s not always the clinician’s skills either. It sometimes a resourcing issue. Hospitals are still run as if they’re 9am-5pm positions, when most of the doctors and support nurses are around during that time. So staffing gets cut in the afternoon shifts and gets cut at night time and on the weekends, which means these deteriorating patients are still deteriorating with far less staff to be able to identify it.

Sam King: So what do you propose should be done about it?

John Rihari-Thomas: Unless we get a lot of money and resources, it’s very difficult. That’s partly the reason we have these rapid response systems to aid in being able to help detect these patients.

Sam King: So how much of a change is enough to know that the patient is deteriorating?

John Rihari-Thomas: Well that’s kind of a problem, because as you know, every single patient is different, so for patients that may severe heart failure are always going to have low blood pressure, so they’re always going to trigger the rapid response system when we do observations. So, it’s very difficult and each patient needs to be assessed on their own individual basis. But there are general parameters that we start off with and we came to those through research. So there were a lot of studies done in the 1990s and early 2000s in Australia.

Sam King: Do you ever update the parameters based on specific patients?

John Rihari-Thomas: Yeah we do, and it’s up to when we do the assessment of each patient – it’s up to the medical teams to see whether the activation criteria are more sensitive for that patient.

Sam King: Ok, so I’m curious – I guess from the nurses’ point of view, how do these systems that a patient is going downhill?

John Rihari-Thomas: In NSW, we have colour-coded observation charts, so vital signs charts. There’s a yellow zone, which are more sensitive criteria, which we define as early warning signs of deterioration. And then we have our red zone, which is our rapid response zone for more advanced and later signs of deterioration. So usually those two things will cause different response levels from different types of clinicians.

Sam King: Ok. Have you seen a deterioration of a patient first hand?

John Rihari-Thomas: I’ve seen a lot of deteriorating patients.

Sam King: What happens?

John Rihari-Thomas: Usually, as a I said, they either haven’t been identified in he beginning… it depends what the deterioration is for. But what will happen is if the rapid response system kicks in the way it’s meant to, the nurses will realise that they’ve hit a red zone and they’ll initiate the rapid response. And the hospital will determine what sort of response that patient gets. Some hospitals use a senior doctor like a registrar to come to the patient within 30 minutes. Other hospitals use an intensive care based medical emergency team, which goes to the patient straight away. So once again, it depends on the model and the resourcing of that hospital.

Sam King: Could you tell me about a specific case? Let’s say the worst one you’ve ever seen if you’re OK to talk about it.

John Rihari-Thomas: I can talk about myself if you want! (laughs)

Sam King: Well, if you’re OK too, sure!

John Rihari-Thomas: OK, I’ll give you a personal example. About four years ago now, I was involved in a fight where I was attacked where I lost sight in my right eye. I was sent to hospital and clinicians were obviously quite concerned around the eye trauma, but weren’t putting everything else together about what was happening physiologically. It was 24 hours before I received the surgery to reconstruct my eye. In the meantime, I was actually sent down another floor, escorted by a nurse but then left outside the eye clinic. During that time, I was definitely going into shock. I passed out a few times, I remember nurses saying, “Who is this patient? What’s he doing” and they said, “Oh, he’s waiting for the clinic.” And I remember having difficulty even trying to stand to go into the clinic. When the doctor looked at my eye, I was quite shaky, but still, the registrar where so focussed on the trauma, they weren’t actually looking at what else was happening, and I guess this happens a lot, particularly… there’s also the other side of the coin where we do need to activate these systems for every single person. So they’re quite rigid, which means that we get a lot of “false positive” calls, where patients do actually enter the red zone but they’re not deteriorating. So, a lot of the time after you repeatedly use that over and over and it occurs all the time, people start to get a little bit complacent, and there’s a little bit of “cried wolf” in there as well. So, clinicians may not pay the attention that they should, primarily because we get so many of these calls because the system is so rigid. A lot of these systems are imposed as well – they’re given to the hospitals and enforced by policies, but a lot of times the resourcing is not there to back them up and make them work effectively.

Sam King: Is your personal experience what set you on track to do this research?

John Rihari-Thomas: No, I was already doing my job and that research at the time, but it just made me more aware…

Sam King: Oh! So what was it like knowing what’s going, you know?

John Rihari-Thomas: At the time I was too sick to put it together. It was only later on when I came out of there and I was like, you know what, I was actually quite sick. And yeah, it was once again, not picked up…

Sam King: I guess it sort of galvanised your resolve to work on making these systems better, right?

John Rihari-Thomas: Yeah, correct.

Sam King: Ok, well look, how do you think the march of technological progress will change the way we monitor patients. I imagine for example AI would come into it in the future – do you see that happening?

John Rihari-Thomas: There’s definitely a lot of technology out there. There are systems where vital signs and observations are all recorded electronically. They’re stored in a data base and they’re automatically… when they realise that a patient’s entered a specific zone, it automatically sends off and activates a rapid response system. So it bypasses the human factors. The bad thing about that is that a lot of the time it takes away the human assessment of the patients. So being able to see the patient and going, “Well, they have hit this criteria but they’re not deteriorating.” It’s OK for that patient to be in that situation and have that blood pressure and heart rate as part of their diagnosis. So I guess the bad thing about those systems is they don’t take any human factors into relation. But the good side of that is it blocks out the middle men which are the clinicians and it activates it, so regardless of the resourcing or the skill levels of the clinicians, it will still be activated, so that’s the positive side of those kind of things. But they are expensive – everything in hospitals is about budgets these days. They probably will come in eventually as there are more and more and they become cheaper and more readily available.

Sam King: What would you like to see in the next few years? More of these systems?

John Rihari-Thomas: I’d like to… I think two major things are wrong with our system at the moment: one is inadequately trained clinicians, specifically for rapid response. So quite a lot of the time they’re just given that job and it’s a very difficult job. It’s about going in and sometimes taking control of another team or another doctor’s patient and re-changing and rewriting their medical plans. So from a kind of cultural and professional respect perspective, that’s very difficult for some of them to be able to do that, and also there’s the consequence that if they have changed the criteria on somebody else’s patient and something happens to that patient, then they’re responsible and it was really their patient to be able to do that. So those kind of things – I’d like to see a lot more education around being able to communicate better with the other medical teams and the other medical officers – being able to take more of a management and control kind of approach to be able to do that better. Also it’s not just about personnel resources, but also equipment resources as well. I think we’re still thinking in the past, and before these rapid response systems were developed, we used to have what we call cardiac arrest teams. So we would wait until the patient actually had a cardio or a respiratory arrest before we’d send out ICU to try and resuscitate them.

Sam King: Right. Being reactive instead of proactive.

John Rihari-Thomas: That’s right. So the whole focus of these is to get in early. But we’re still resourcing and putting a lot of money into training doctors and nurses in allied health, on basic life support and advanced cardiorespiratory life support. And we’re putting a lot of money into equipment for resuscitation, but in actual fact we should be putting this money into the rapid response systems to enable us to prevent these things happening in the first place. So, I’d like to see a big shift in the way that we actually resource our hospitals and our rapid response systems.

Ninah Kopel: John Rihari-Thomas, a PhD student at UTS who’s working to improve response times during hospital emergencies.

Don’t forget, if you want to hear more from us at Think:Health, you can find us online at 2ser.com/thinkhealth or you can find us in your favourite podcast app. Just search “Think Health” and don’t forget to subscribe.

Remember, I’m not a doctor, so if the show has raised any questions for you, head to your GP. This show is produced with the assistance of the University of Technology Sydney and 2ser. I’m Ninah Kopel, see you next week for our special Olympic edition.

Isobel Bishop: It’s just so exciting, so new to me, that while it’s a massive achievement and a massive thing, the work is not even done. The work is just starting right now.

Ninah Kopel: We’ll speak to Isobel Bishop, a UTS student heading to the Rio Olympics to represent Australia in water polo. For this story and more, see you next week.

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