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SA: Hello, and welcome to Master the MRCPCH. In this series, we tap into the expertise here at Great Ormond Street Hospital to give you an overview of a topic on the RCPCH exam curriculum. So whether you're revising for an exam or just brushing up on a need to know topic. Hopefully this podcast can give you the information that you need.
I'm Dr. Sarah Ahmed, a paediatric registrar and the current digital learning education fellow here at GOSH.
This is part two of our episode on Palliative Care principles. In the last part, we talked about principles in palliative care, namely advanced care planning and symptom management. In this part two, we're going to go into a little bit more detail about symptom management.
Dilini, thanks for coming back for part two. So in that first part we gave an overview of paediatric palliative care And we touched on some key concepts, specifically advanced care planning and symptom management. I want to go into a little bit more detail about symptom management by talking through some of the symptoms managed by the palliative care medicine team. So can you start by telling us a bit about the principles behind symptom management?
DR: Sure. I think as I talked about before, the main principles of sensor management are firstly about the context and where you are in a child's palliative care journey. A good example would be if there is a, say a fifteen-year-old young person who's got metastatic Ewing's sarcoma and has got quite a heavy burden of lung mets and they have just finished their course of treatment and they've recently relapsed. And so even though they've got this disease burden and they're aware of it and there are no other options for curative oncological treatment, they are still pretty active, they're pretty robust. They're probably, they might still be going to school. They might still be going out with their friends as much as possible, or with their family and not really attending hospital 'cause they're pretty well, even though they've still, they've got this disease burden. So I'd say that a young person like that is kind of at the beginning of their, perhaps their palliative care journey. And if they present then with breathlessness and dyspnoea, so discomfort from their breathing and it's pretty distressing, then it might be appropriate for a young person like that to come into hospital and have it assessed with the usual ways of assessing someone who comes in with dyspnoea, chest X-ray, and that might show perhaps they've got a pleural effusion or bilateral pleural effusions. In that situation, even though we know that we can't reduce the disease burden in their chest, it might still be helpful for them because they're ambulant and they want to get out and about, it might be helpful to drain some of that fluid away. So a chest drain in a child or a young person like that presenting with dyspnoea might be a really good way of managing that dyspnoea.
SA: Mm-Hmm.
DR: And you know, a short admission in hospital to have a chest drain in, relieve their symptom, take the chest drain out. We know that it's likely that effusion will reaccumulate, but it might buy them weeks of continued good quality of life. And so presenting with dyspnoea or a symptom like that at that time of the disease trajectory might be very different to if that same person was now several weeks or maybe a few months down the road and was actually now in bed, not able to go to school, perhaps getting very breathless just even on sitting up in bed and was struggling to even transfer from the bed to a chair, and was really in a very different situation from where they were when we first treated the dyspnoea. Increased dyspnoea at that point, it wouldn't really be appropriate to get that person into hospital to then insert a chest drain.
SA: Yeah.
DR: So it's not that you can't do it. It's that you need to think about the risks and benefits and the context of how that symptom, the same symptom in the same person is presenting at that point in their clinical condition than it was earlier on. And at that point it might be much more appropriate to have some conversations with them about positioning, so non-pharmacological techniques. Maybe some calming behavioural strategies to relax them so that they're not panicked with their dyspnoea. Perhaps some low-dose opioids and maybe a short-acting benzodiazepine if they need it, might be more appropriate. So interventions where they don't need to change their place of care, where they can have it quickly done and they might need some repeated dosing or some some more interventions that they can do at home, but don't need to go into hospital. So you know that that's a good way of talking about how the same symptom in the same person is entirely about, you know, the context of how it presents and preferences, what's practically possible and what's appropriate given all of that as to how you manage that symptom.
SA: Yeah, absolutely. Thinking a little bit more about some of those symptoms, can we talk about pain in a bit more detail, which I feel like is the big symptom that most people try and seek advice for.
DR: Sure. Yes. So managing pain, when we think about pain, you can go back to Dame Cecily Saunders, who was the, if you like, the mother of the palliative care, the whole adult palliative care movement back in the fifties. And she came up with this idea, this concept of total pain. And we now from you know, a separate area of literature, we've come to that exact same concept of total pain, which is in palliative care literature. And we call it the biopsychosocial model of pain. They're both very, very similar and they just describe the same thing in different ways. So you are talking about the biological or the physical aspect of pain. So for example, that would be what is the pathological process? Is this neuropathic pain? Is there nerve damage? Is it nociceptive pain? Is there tissue damage? And the psychological aspects of it. So that would mean someone's thoughts and their mood and how that impacts into how the pain is presenting. And then social factors, we mean by often we talk about socio cultural factors. So, how does that person cope with adversity? There's lots of literature that look at things like memories, like attachment theory and all sorts of, kind of socio cultural aspects of how a person is made up, which also contributes to how that symptom of pain presents. If you think about it, we all feel pain and perceive pain differently. And we talk about some people having higher thresholds for pain than others. That's not really strictly the case. What we are talking about is that this biopsychosocial view of how pain presents is variable because even if biological factors are exactly the same, the psychological and sociocultural aspects are going vary between people and they're going to vary within the same person as well.
So, you know, if I'm feeling a bit lonely and a bit low and a bit fed up and I get a paper cut, I am probably going to feel very sorry for myself and feel that pain, you know, as a really great pain. Whereas at another time when I'm busy doing something nice with friends and family around me, and I want I want to get on with enjoying myself. If I get a paper cut, then I would probably minimise it and it probably would not feel the same. So it's the same injury, it's the same type of nociceptive pain, but my mood, my thoughts about it, the social aspects of, of where I am and how I am perceiving that pain at that particular time are very different. And in one case, they turn the volume up on the pain and in another case they turn the volume right down. And that's just, you know, that's in the same person. And so that's why it's really important to know how you perceive pain is a purely subjective experience. It's, you are in as much pain as you say you are. Nobody can tell you you are not in pain and nobody can tell you that you shouldn't fuss about it. And you know, or you are being very stoic. That's an observation. But you are in as much pain as you say you are. So if you say you are in a lot of pain and all you've got is a paper cut, you're still in a lot of pain.
SA: Yeah, absolutely. So once you've put it into the context and you've thought about all the different things that could lead towards what might be causing this pain and making it better and making it worse, what kind of interventions might you suggest from a palliative care symptom care perspective?
DR: So once you know about that, you need to think about everything that sort of inputs into that person's perception of pain. What you are doing at that point is you are making a formulation. We call it a psychological formulation, but it's not just a psychological formula, it's the biopsychosocial formulation. So what is it that is leading you to perceive the pain at that particular time. And it's that formulation which will drive how you further assess it and how you manage it. So we always have to think about assessment and management, just like with absolutely everything else. So good management starts with good assessment.
SA: Yeah.
DR: And assessing your pain, just like with everything else, starts off with a history and an examination. And in terms of pain your history might also include sort of aspects of your advanced care plan, if you like you. So aspects of what that person's wishes and preferences are. So it might be that they have said, I've got, I've got a headache but I don't want to go to hospital for anything. So that might mean that even if they've got a headache that might respond to radiotherapy, if they absolutely have said they never want to go into hospital again, and that has been agreed, then that if you like. Another one to think about is whether people want IV antibiotics. So if a young person who has got a life-limiting illness and is being palliated at home, for example, develops an intercurrent chest infection? Well, chest infections are reversible, so you can get better from chest infections even if you have a metastatic medulloblastoma, for example, so you can get better from chest infections. And usually when we get chest infections, if we can't deliver care at home. So if you can't get oxygen at home or you've tried oral antibiotics and it's still not improving the next step, for you and I would be to go into hospital and perhaps have intravenous antibiotics.
But if someone has already agreed that that's not, that's a step too far, that's not something they want to do. They have agreed that in the context of everything else that's happening in their life this is not something that they, the risks of going into hospital, the risks being that they miss out on precious time at home, they don't feel that that is enough of a benefit for them to justify that intervention.
And so an advanced care plan might give you a bit of a roadmap of what you are going to do. And so that's part of the history taking.
The other thing is what are the practical considerations? You know, what treatment can you do at home? If I had a chest infection, I couldn't have oxygen at home. That doesn't mean you can't have oxygen at home. You can't get oxygen at home. You just wouldn't have it for me. So, you know, there, there might be a an anticipated plan for managing symptoms in that person already, which means that that person has got oxygen available at home. So they've already got some aspects of basic medical and nursing care over and above what the average person would have that they can have at home.
And so all of that is part of the history taking. It's as much about the symptom as about the context and probing a bit about what's possible.
And then with something like pain, people always think about assessment scales. So there are lots and lots and lots of assessment scales for looking at pain. I think the obvious ones to think of you do a good history for pain, lots of people have got mnemonics that they use. So you might have the PQRST. Or the Socrates mnemonic. Whichever one you use as long as there is something about the type of pain, the sight of pain, the timing of it, the exacerbating factors, the alleviating factors, and the radiation. As long as you are thinking along those lines, whichever mnemonic it is that helps you get there, then that's a good comprehensive pain assessment. Specific scales in paediatrics, there aren't any specific pain assessment scales which are validated in palliative care in each and every age group. But that doesn't mean we can't use scales, we just have to know the context that we are using them in. So we often use pain scales which might be used in acute pain or post-op pain in children. And examples of that might be a visual analogue scale, like the faces scale. Or you could use a numeric rating scale, zero to five or zero to 10, zero being no pain at all, 10 being the worst pain you've ever felt. And in non-verbal or pre-verbal children, we use behavioural scales. And one that we use at GOSH is the FLAC or the FLAC-R Scale. The revised FLAC Scale. And that's you looking at face, legs, activity, crying and consolability. So they're all behavioural scales.
And we also use physiological parameters like heart rate. If your heart rate goes up, that might indicate you are in pain, your blood pressure goes up, that might indicate you are in pain. If your resp rate goes up, then that might be that you are panicking from being in pain.
SA: Mm-Hmm
DR: So a combination of all of those sort of bedside techniques and assessment scales can be helpful. Broadly, I would say pain assessment scales, it's more about the change in the scale in the same person with the same episode of pain. That's useful in knowing whether your intervention has been helpful or not, rather than the numerical rating scale for you and comparing it to the one for me. If somebody has pain and we give them a medication like paracetamol or we give them a, an ice pack or a heat pack, and then we come back in half an hour and we reassess using the same assessment scale, and it's improved - that is more meaningful information as to what your intervention has done, rather than using different scales or comparing scales between people,
SA: Did you know that GOSH runs mock exams for the MRCPCH? Great Ormond Street has been running mock exams since June 2016. The mock is based on the MRCPCH clinical examination curriculum, and candidates are able to get the full experience and conditions of a real exam setting, and gain valuable feedback on their performance. To find out more go to the GOSH website and search MRCPCH exams.
SA: So what are the, the management principles that you would employ when you're approaching pain?
DR: So, you know, as I said, when we've made a good assessment like that, and it doesn't matter how you've arrived at that, the management principles will be driven by this formulation that you've done which is using that biopsychosocial model or the concept of total pain. And incidentally, this pain idea of managing a symptom, or assessing the symptom, you can extrapolate that to almost any other symptom. We talk about using pharmacological approaches and non-pharmacological approaches. So by non-pharmacological, the main ones are cognitive approaches. And examples of that would be things like guided imagery.
SA: Sure.
DR: So the idea of storytelling, which some youngsters with really vivid imaginations, they just take to it brilliantly. And you can record some of this guided imagery and they can play it. And that really is helpful. And you know, as I say, these are techniques that you use for things like peri procedural pain, acute pain, but you can use them absolutely in palliative pain management too.
SA: Yeah.
DR: Other things might be physical things. So a TENS machine, a transcutaneous electrical nerve stimulation. And you can get really good machines now, which are very discreet and they work by having pads connected to electrodes and a battery pack device, which is just tucking tuck into your belt. And this provides an electrical impulse, which competes with a pain signal. And a lot of people find that it really helps, particularly people who respond to massage. So things like musculoskeletal pain find it really, really helpful. There's no top dose, there's no limit to how often, you know, how long you can use it for if it works for you, it's useful. And it's also useful for young people because they are in charge of their intervention then. And they can turn it up, they can change the settings. They can take it on and off whenever it suits them. And it's quite good for kind of ambulant people because they can get, take you to school, they can take it to grandma's, whatever they want to do. So that's useful. And also things like massage, heat packs, ice packs are helpful.
And then behavioural techniques are, we often find that having good psychological support to teach you these techniques. So things like mindfulness, biofeedback, they fall into these categories and it's often helpful if the young person wants to, to have an assessment made, say with the psychologist or with the trained nurse specialist who can talk them through how to get good at these, cause these techniques, they're only as useful as you are at doing them.
And then the other area, the pharmacological approaches. I mean, broadly we think of them as systemic analgesia, whether that's oral, parenteral or any other root. We think of them as regional analgesia. So that would include things like nerve blocks or epidurals. And we think of topical analgesia, which might be things like lidocaine patches, which might be in a specific area topical, or it might be more generalized systemic, but via the topical root, like fentanyl patches.
SA: So we've talked about pain and you mentioned dyspnoea. Can you just give us a quick overview of the other symptoms that you would get involved in managing, in treating?
DR: Sure. I think the commonest symptoms that we find in children with palliative care needs, and they don't have all of these obviously. Pain is the big one. That doesn't mean that everybody at end of life has pain. Certain conditions don't present with pain at all.
Dyspnoea, as we said, it isn't the objective findings of increased work of breathing. And I think people get confused with that. Just because your resp rate goes up, that's a physiological response to whatever the pathology is. But it's not necessarily uncomfortable. Dyspnoea can occur at a low resp rate, but it, it is the distress of breathing. So it's the distress and that panic feeling associated with it, regardless of what your numbers are doing.
Agitation. And for agitation, that might be because of pain. It might be because of dyspnoea, it might be because of hunger or thirst. So we always ask people to look for another cause of agitation and treat that appropriately. But things like, particularly neurological diagnosis, you might get cerebral irritability or central causes for agitation.
Excessive secretions, often at end of life. And again, that sort of gurgling or rattly breathing that people see in people who are really at the end life and perhaps within the last few hours, that, again, in someone who is poorly conscious, doesn't necessarily need treatment. So excessive secretions doesn't need treatment all the time, only if it's causing distress to the person.
Seizures, obviously we talked about how palliative management of status epilepticus deviates from national protocols because obviously you want to do this at home.
Nausea and vomiting is another very common one and constipation. This is not to say that there are no other symptoms that we would palliate at end of life. Of course there are, but these are the main ones that we, we think it's useful for everyone to have a bit of an idea as to how to start managing them.
SA: Absolutely. And I think what you said right at the end there is really important. it's being able to start management no matter who you are and what team you work with. And then knowing that you can reach out to you for more advice later on as well.
DR: That's right, yes.
SA: So. Let's round up with some quickfire questions. So we ask everyone these at the end of any podcast. So firstly, are there any classic exam questions that you think might pop up around this subject?
DR: I think the classic exam questions are likely to be around symptom management. How do you assess pain? And I think you'll get that not just in the palliative care section, but also how would you assess pain in anybody.
SA: Yeah, absolutely.
DR: And obviously what we talked about. PQRS or whatever it is that you have in your mind of how to take a good history and direct your management. And again, non-pharmacological and pharmacological style areas of management are the way to think about it.
SA: And being aware of it being biopsychosocial as well.
DR: Yes.
SA: Secondly, and you've mentioned a few of these already, and I'll make sure everything's linked down below, but are there any useful resources that you would recommend?
DR: The Royal College of Pediatrics and Child Health, the RCPCH is an excellent resource. There is a huge amount there from the e-learning areas there about, there's how to manage chronic pain there. There's some useful webinars. And there's links to good websites for palliative care.
Another good website that I talked about was the Together for Short Lives. So this is the UK charity for children with life limiting, life threatening Illnesses. And it's for families as well as professionals. They've got some excellent publications about frameworks for managing general palliative care, antenatal palliative care, out-of-hospital extubations, transitioning children with life-limiting illnesses to adult services. And it's a really kind of user-friendly framework. It means that you can do it wherever you are in the UK. You can identify who the teams are in your area. And so you can always find someone. This gives you an outline of what to think about so you don't miss anything out.
SA: Yeah, it's a fantastic website and I'll, I'll link it down below. And finally, what are your three takeaway learning points?
DR: I suppose my three takeaway learning points would be going back to the learning objectives. So, I would say understand what the definition of palliative care is, and it's a very wide definition, but don't think of it just in terms of end of life care. It's so much more than that. And specialists like me may do a lot of the end of life care, but there is a vast enough number of services, children's hospices community palliative care teams, GPs, district nurses, general paediatricians, community paediatricians. All of these people are doing palliative care for their children with life limiting illnesses. So there's a wealth of information wherever you are and lots and lots of people to support you and local champions that can tell you where, where to get information from. So that's the first thing.
I think the second thing is understand about context in managing symptoms. So I think that's really important, you know, and I think it's very easy 'cause we all start off doing sort of disease directed curative pediatrics and to know then, well how, you know, I would put a chest drain in, in this situation. Well, what else is there to do? It's really important to know what the context is. And it's not silly to think about a chest drain but understand why that might not be the appropriate thing and what alternatives there are. And then advanced care planning, that's everybody's business. If you work with children and young people, then it's likely that you will know a patient who is, and a family who are dealing with a situation where there's life limiting illness. So you are the person they trust. If you are the person that they know. They don't want to meet a new person like me necessarily. So you are, you know, you are the right person for them to approach and for you to think about having those conversations with 'cause it's about providing them with opportunities that, without that conversation and your expertise, they might not get, and they might end up in a situation where they have very few options when that needn't have been the case. So, advanced care planning really important.
SA: Absolutely. I completely agree.
DR: And the principles of pain and symptom management. It can get very, very, very complicated with all sorts of interventions and specialist interventions and all the rest of it, but know about what the basics are. The basics are assessment, context and the usual management approaches, pharmacological and non-pharmacological that you would have when you think about any kind of management plan. And then know who to approach when you want to refer on or when you want a bit of guidance as to what to do next.
SA: Yeah, absolutely. I completely agree. Dilini, thank you so very much for talking with us today.
DR: My pleasure.
SA: Thank you for listening to this episode of Master the MRCPCH. We would love to get your feedback on the podcast and any ideas you may have for future episodes. You can find link to the feedback page in the episode description, or email us at
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