Rebecca: Just to let you know, during this episode, Sarah and Matt will be discussing death and the process of dying in some detail.

Hello and welcome back to season two of GPs Talk Cancer. I’m Dr. Rebecca Leon and joining me again through this podcast is Dr. Sarah Taylor. We are both practicing GPs and GP leads for Gateway C. We’re both passionate about diagnosing cancer early and in this podcast, we want to share our clinical experiences with you so you can make better, faster, and more confident cancer diagnosis in primary care.

So, there’s some official stuff to make you aware of. We know this podcast might be of interest to anybody, but it’s really aimed at primary care health professionals. And although all patient cases are based on real stories from clinical practice, they are fully anonymized with no identifiable patient data.

Gateway C is the free early cancer diagnosis resource funded by the NHS and is based at the Christie NHS Foundation Trust. GatewayC is a national programme across the whole of England, Scotland, and Wales. Register online to gain access to free interactive courses, documentary-style videos, referral maps and more.

So the episode today is going to be a little bit different. I’m away and so my co- host Dr. Sarah Taylor is bringing you a special episode with Professor Matt Makin. The episode is going to cover palliative cancer care. So, it’s a bit different from the episodes based on cancer sites and it will be a bit longer than the usual episodes.

I think they’ve both got a lot to say.

Sarah: So, Rebecca’s not able to join us today because she’s gone away. So, I’m really pleased that we’ve got Matt joining us, who is Rebecca’s husband who I’ve known for longer than he’s known Rebecca because we were at medical school together.

Matt: It’s not a competition, Sarah.

Sarah: It isn’t a competition, it isn’t. But Matt and I are going to, we’re going to have a little bit of a stray away from talking about early diagnosis today.

Because Matt’s a palliative care consultant and I’m going to pick his brains on palliative care. So, thanks for joining me, Matt.

Matt: Well, thanks for inviting me and, um, looking forward to the conversation.

Sarah: So, I’m going to have to do the bit on the stats today, which takes me out of my comfort zone. So, just to start off with, in 2022, hospital was still the most common place of death with 43.4% of deaths occurring in hospital.

Of those people who died of cancer, they were more likely to die at home than people with other major conditions.

So Matt, we’re going to base our conversation around Fred, who’s the patient we had in our lung cancer module who was diagnosed with a late-stage lung cancer and sadly deteriorated fairly quickly. So, he was a man in his early, mid-sixties, well supported by his wife, two grown up children with, with grandchildren, who lived nearby. And that’s quite a lot of things that were important to him.

Firstly, I just wanted to talk to you, one of the bits we talked about with Fred when we were looking at him in the module was, is, was pain that he had. He had a little bit of back pain. I just wanted to pick your brains on how you would assess his pain and then go on to manage it.

Matt: Okay, so the gen, I think the general principle is to focus on Fred’s main concerns.

So, the ticket we, we might be going into the house with is, can we assess Fred’s pain? But that might not be Fred’s main concerns. It might be his family’s main concern. Yeah. So, I think what I probably want to do in the first instance is before I go and assess Fred, essentially kit myself up with as much knowledge about Fred as possible.

So, kind of understand what’s the latest information from hospital, from his clinics, what do the scans say about his disease? Um, where is the disease? Is it, is it localized? Has it metastasised? Is it in his bones? Is it in his liver? Um, so go in with as much information as possible. Also get a sense, I think, of where he is on his treatment journey.

So, what that last conversation was with his specialist about what’s next. Um, and then the first conversation with Fred and his family, will be about assessing that gap between. So, the reality of what is known and, and his perception of where he is. So that gap sometimes referred to as the Calman gap.

I think that that the gap between reality and expectations.

Sarah: Okay, so I’ve not heard that.

Matt: Haven’t you heard that?

Sarah: No

Matt: That’s the first, uh, that’s the first fact of the day. Yeah. I think it’s called the Calman gap. I’ll check on, I’ll check on that.  Sounds convincing. Yeah. So, the gap between reality and expectations is called the Calman gap.

And I often see the Calman gap as a, as a, as a set of steps. So, expectations sometimes are at the top of the step, and reality is at the bottom of the step. And the trick is to assess how long that staircase is, what the gap is between expectations and reality, because if Fred’s view of his cancer is, oh, I’ve got a touch of cancer in my lung, but I think it’s all cleared up now and I dunno why you’re here, doctor, everything’s fine.

And you look over Fred’s shoulder and Fred’s wife is looking anxious and distraught because she knows otherwise, um, you’ve got a big gap. So, you’ve gotta, we’ve got to look at whether the, the right thing to do is to try and take Fred down that staircase. What you don’t do is push Fred from the top of the staircase ’cause he’ll fall all the way down to the end up in a heap.

So, assessing that gap is really important in the first instance to say, first of all, reassure the patient and the family that you’ve had a good read through their notes and got all the latest information. And that’s the first tool I pull out my toolbox when I’m talking to a patient with advanced cancer because if you start off on the right foot, then it means the rest of the consultation is easier.

Sarah: That’s true almost always.

Matt: It is, isn’t it?

Sarah: If I don’t bring patients into the room and say the right thing to start off with, I’m thrown for the rest of the consultation. Um, and, and, and I sometimes, or if I assume why they’re come in, I just get lost.

So, I think yeah, I think that’s a really good way of starting. Yeah. And I’ve never thought of actually just, I’ll often I’ll, I’ve done it before I go out, but I, I wouldn’t necessarily tell people that I’ve done it. Yeah.

Matt: I always tell people I’ve done it. Yeah. Because yeah. I, because I think I, I meet a lot of people who will say to me, there’s only so many times I can tell my story.

And there was a statistic I saw, I. Some time ago, uh, I’ll say it with confidence so it sounds more credible, but apparently in the, in, in the last year of somebody’s life, they are going to meet, you know, more than 70 odd health, different health professionals. And if they’re telling their stories 70 times, that can be quite exhausting.

So, so very often I’ll frame that conversation around saying, you know, I’ve read your record, find out exactly what’s been going on, had a look at your scans or the results of your scans, and I want to come and see you today to find out what your main concern is. And then that, the question about what their main concern is, is the open door to give permission to talk about anything really.

Because there, the other thing I find is, is that when if you ask people how are they, we are kind of hardwired to say, we’re very well thank you. Sometimes, not always, but sometimes it’s a bit like, you know, if you’re in a restaurant and you’re eating a meal and you’re thinking, God, it’s like, you know, gravy’s cold potatoes are hard. And then the waiter comes over and says, how’s your meal? And you say, oh, lovely. Thank you. Yeah. You know, sometimes there’s a bit of a, so can I ask about your main concerns? Opens the door, and if Fred’s main concern is his pain, then then we can talk about pain. Okay.

Sarah: Yeah. I was told, I went on a course a couple of years ago and then talking about and how to do good postnatal checks for women and that that was a similar thing.

Not to say how are you, but to say, how was the birth and how are you finding being a mum? Yeah. Rather than, how are you, because. Everybody will just say, yeah, fine. Yeah. Um, so yeah, that’s love an open question. Yeah, absolutely. So, assuming just for the moment, because we’re gonna assume that Fred’s got lots of problems along the way.

Yeah, yeah. Assuming that the pain is his major concern Yes. Where would you go next?

Matt: Okay, so, so again, I kind of reach into my tool bag and get some sort of reliable tools out. And, and one is to, um, to talk about the, the, the, the, the nature of the pain and the, and the impact that the pain is having on Fred’s life.

And the other thing is I’m really interested in the temporal variation of the pain. And, and I guess what I’m, what I mean by that is how the pain changes over time. Because if a pain is, interestingly enough, if the pain is constantly there all the time, that is sometimes easier to treat than if Fred has relatively pain-free episodes in between severe bouts of pain.

So, I’m really interested in the temporal variation of pain. But the first thing I’ll, the first thing I’ll kind of get into is to acknowledge that actually pain’s a difficult thing to describe to someone. And I’ll say that, listen, I’ll say, listen, pain’s a really difficult thing to describe to someone, but if you were to try and imagine.

If I was to try and imagine, sorry, if I was to try and imagine what your pain felt like, what sort of words would you use to describe your pain? So, if I was to try and imagine what your pain felt like, what sort of words would you use to describe and that can open a door to a real understanding about the nature of the pain.

And it also switches on the bit of my brain that is looking for pattern recognition. So, I’m dead interested in pattern recognition. Because I think that’s, that’s, that’s much of the time the way we work as doctors, whether it in, in in general practice or in, in, you know, my field palliative care medicine.

We’re looking for patterns.

Sarah: Yeah, absolutely. Yeah. I think that’s one of the reasons, isn’t it, that they’re, the stats that actually GP got instinct is a really good indicator of early diagnosis of cancer. Mm-Hmm. And the older you are. The more likely it is. I think it’s just down to having seen patterns and things, people with similar things before and thinking, ah, the last person I saw with this had..

A bit like this. Um, the high platelet count. Yeah. The feeling a bit, yeah. All that sort of thing. Yeah. Yeah, yeah. Yeah. So, so what, what sorts of things would, what patterns would you be looking out for?

Matt: So, I’m looking, one of the things I’m, I’m trying to establish is, um, is the mix of whether there’s any nerve related pain to any neuropathic pain or pain caused by, um, nerve damage or, or injury or nociceptive pain, sort of, sort of tissue damage.

Um, you mentioned back pain, so, um, I’m gonna put it out there straight away that. I am hearing advanced lung cancer, I’m hearing back pain. I’d also be thinking, should I have my malignant spinal cord compression antennae waving and looking for red flags of, of spinal cord compression? So particularly if there was severe pain at night, that was wasn’t being relieved.

Yeah. And that, and that’s where we kind of strain into the important matter of the impact of pain. So, I’d want to know, I’d want to know about the, the type of words that we’re, we’re using to describe pain. So, if it was aching, shooting, burning, tingling use, looking for words that would make me think about nerve pain.

I’d be interested in the, in the site of pain and where the pain moved to, um, be interested in, in, in what relieved the pain or what brought the pain on, um, be interested as particularly as well around whether it affected sleep. Yeah. And because that’s, that’s something that I feel is particularly important in terms of supporting patients living with cancer is sleep.

I’m a great believer in, you know, a good night’s sleep, great fan of a good night’s sleep. Because I think, but particularly in, in the context of pain, because I think if your pain is disturbed by sleep during the night, then your position is less to cope with that pain during the day.

Yeah. And then the risk then is you can spiral into a situation of that we sometimes call total pain, where the pain is an element of that person’s total suffering, but also incorporated in that suffering is emotional distress and psychological distress and money worries and family worries. And I think we all know if you’ve not had a good night’s sleep and you’ve got that kind of brain fog, just everything.

So, so, so I, so back to pattern recognition I’d be looking for in a patient with lung cancer and back pain, I’m, I’m looking for signs of spinal cord compression. I’m thinking, have they got infiltration of the disease into the chest wall. So, I’d be interested in patterns of pain that might be make, might me make me think about chest wall pain.

Sarah: Is that tender?

Matt: Uh, it can be, yeah, can be, yeah, can be. Good question. Just thinking. Yeah, just, yeah. It can be, so certainly if, if, um, so the reason its tender is twofold. So, if you’ve got damage to ribs, then that would be tender. But the other thing is if you’ve actually got damage to nerves, um, what is typical is that patients may experience, um, a syndrome called allodynia.

Yeah. Um, which is pain induced by a non-painful touch. So, by, by a non-painful stimulus. Yeah. So, if, that’s present, then that’s very typical of neuropathic pain or nerve damage pain. So, I’m looking for those sorts of things. If Fred had pain in his right upper quadrant, I might be thinking, is it due to liver metastasis?

But I think the other thing that I’m very conscious of, Sarah and, and one thing I always go into a consultation thinking is try and see through the cancer fog. Yeah. And what I mean by that is, is someone has a symptom and the natural inclination is to think, well, they’ve got cancer, so it must be cancer.

Sarah: Yeah, totally. Yes. And I think we can be caught out in that respect and then, and then that can lead to overtreatment. It’s a bit like the guy who we, we spoke to when we did the breast, who we. Did the breast cancer episode, we spoke to, um, somebody from Mummy’s Star and he was saying one of the reasons women are treated late are diagnosed late when they’re pregnant is because people attribute everything to the pregnancy.

Absolutely. So, cancer symptoms that would be treated and investigated in somebody who wasn’t pregnant are being put aside. So, it’s, it is a similar thing is that it’s looking at everything on face value rather than just making assumptions.

Matt: Yeah, absolutely. And that was a great episode and that was one of my take a messages from that episode.

Yeah. So, I’ve been caught out before. You know, I’ve been in situations where, you know, we’ve been treating abdominal pain and actually we, we’ve not even asked about constipation, you know, the patient’s constipated or back pain that actually turns out to be a pressure sore or there was an occasion where I remember doing a teaching ward round and we were talking about, we were talking about chest wall pain in, in a patient with lung cancer and me waxing  lyrical about neuropathic pain and tissue invasion and bone treatment and all this sort of thing. And then went to examine the patient and they took their pajama top off, they were in hospital and they had a blistered rash in the distribution of a dermatome.

So, they had, they had shingles. Yeah, they had shingles. So, which can be incredibly painful, which can be incredibly painful. So, I think the, the first bit of that conversation, I guess, is about the concern. Uh, what the patient’s main concern is. And acknowledgement that you’ve got to try and see through the cancer fog, looking for patterns of the pain that give you clues.

But then I am really interested in the impact it has on the patient’s quality of life. So, that’s about, I think exploring things like the impact on sleep, which is my number one concern. And then I guess I’d be moving into areas of, um, impact during the day. So, does, does the pain essentially disturb or distract you from doing the things you enjoy doing?

Sarah: Yeah. If you’re getting pain on movement, but you’re not moving then It’s sort of not quite as significant. Absolutely. If somebody’s too frail or tired or yeah, yeah, yeah, and isn’t moving very far. And the pain only comes when they stand up. Yeah. It’s, yeah.

Matt: And that’s, and that’s why that understanding of the temporal variation of pain is dead important.

Yeah. Because often what will be reported in terms of pain to the doctor is. The patient’s in, you know, the patients in pain come, you know, and an invitation to come and assess the patient when they’re in pain. The risk is if that, if, if changes in prescription are made because of that report of more pain without an assessment, the nature of the pain, particularly if the patient is relatively comfortable in between episodes of pain, what happens is you get doses of slow acting pain relief increased, whether that they’re taking that by tablet or you know, it’s a continuous subcutaneous infusion, via a syringe driver.

And actually, the patients can then drifting to dose limiting side effects of drug with hallucinations, drowsiness, myoclonus, all those sorts of things. So, I want to understand the impact of the pain, and then I want to understand the temporal variation of the pain. Mm-Hmm. And then also what medication is the patient on and what helps and what doesn’t help.

And then get a sense, I think get a sense of well, of how stable the situation is. And, and, and by that I mean, it, you know, back to that thing, isn’t it? And I know you talk about it a lot. We are dealing with in, we are in the business of dealing with individuals. We, we are not, we are not, we are not dealing with sort of, we’re not mechanics for factory issue. Audi A4’s that all come out the same. Good thing. Really? Yes, it is actually.

It’s, it’s, they, you know, we, we, we are in the business of, of having relationships with, with individuals. So, it’s dealing with. All, all those individual circumstances, which can be cultural, they can be, uh, they can be affected by deprivation. you know, some, families, you know, are really solid and together and supportive and regimented. And, other of our patients don’t have access to those networks of support.

Sarah: I looked after a patient years ago, who, um, who’s ex-wife had taken him back in and he was, he was a really tall man and he was basically dying in his. Um, he, the granddaughter had been turfed out of the room and he was in her bedroom in a little kiddie’s bed with his legs hanging over the end because he was too tall looking at being looked after by his ex-wife who’d been estranged from for about 30 years.

Yeah. Um, and, and so that’s a wholly different situation Yeah. Isn’t it, from going into somewhere where you got a whole family. Absolutely. And actually, what I’m interested, what you were just saying about the idea that the temporal variation, so you might have a patient who actually the pain isn’t bothering them apart from for short periods of time, but the family really get quite distressed by seeing them in pain.

Absolutely. And then you end up treating a pain. The pain with medication that has potential side effects. Yeah, absolutely. When actually it isn’t bothering the patient in the first place.

Matt: Absolutely. Absolutely. Absolutely. So, I call that episodic pain. Yeah. So, I, what I, what the other, the other thing I’d, I’d want to do is want to understand how much that pain is constant and how much that pain is episodic.

Yeah. Because you might treat the episodic pain differently than you treat the constant pain. And then with the constant pain, you’re, you’re thinking about the mix of neuropathic pain, inflammatory pain, tissue damage pain, colicky pain or whatever. And then trying to choose your combination of medicines to, to, to suit that.

But the other, I guess that’s another issue in terms of choice of medicines, but as a principal rule, um, if patients are in severe pain, you know, opioids are great, but what we’re, what we try and do now is, is use drugs in combination with other drugs. So, we minimise the dose of opioids. So, uh, we don’t want to obviously withhold analgesia for people who need analgesia, but I think there was a, certainly when I started in this specialty, there was a bit of a, an attitude which said there’s no ceiling dose of morphine.

Patients can have as much as they need, and the dose can go up and up and up. And our thinking now is actually that approach, that that approach is, is quite hazardous, um, and actually can lead to situations where, patients develop this unusual syndrome of opioid induced hyperalgesia. So, so, what we, what I tend to do is when I’m looking at a patients existing medication. I’m thinking, where are they in their opioid journey? Mm. And if they’ve not started, obviously there’s, we’ve got lots of potential. Maybe people will be on a mid-range of opioids, but I would be, I’d, I’d become very, uh, become anxious if a patient was taking the equivalent of more than 200 milligrams of oral morphine a day, that’s when I’d, I’d really be thinking about completely…

Sarah: I can remember patients when I was hospital, we were on way way more than that.

Matt: Yeah. And typically, that’s because we’re not using adjuvant analgesics, anti-inflammatories or other pain interventions.

Sarah: And there weren’t the neuropathic agents around that you could use in the same way.

Matt: Yeah. That’s interesting. So, we, I was going down a drug rabbit hole there and I probably shouldn’t, I’ll just crawl out.

Sarah: What, what do you use, do you have any particular resources you would go to look at guidance on analgesia or what, what do you do? I mean, obviously most of us use, use neuropathic agents now, we use them a lot in pain. What, what would, where would you go to for more information?

Matt: So, what, what I’ve found is regionally most regional, ICSs, integrated care system will have their own local prescribing guidance. And I think the, the reason why I’d say I’d use, I’d go to that first is typically then the system will be geared up to providing those drugs.

So, um, the, you know, we’ve got the internet, you know, which is, you know, where you can access all sorts of information. I think a lot of clinicians now are increasingly using, artificial intelligence to access information. So, these sort of things like Microsoft Copilots and another, do you use copilot?

It’s brilliant. Honestly. It’s brilliant. It’s like having a researcher working alongside you where you say, go and find this out, and it, and gives it back. It’s wonderful. Oh, well, I might investigate. Yeah. I’m sounding a bit smug about that, but I’ve only started using in the past couple of weeks, but it’s really useful.

Um, so, so local ICS guidelines? I’d, I’d say, I’d say…

Sarah: Because it means that if you’re trying to get hold of things from local, local pharmacists, will tend to stock the things that, uh. Use and, and presumably then if you get a patient who goes into hospital, they’re likely to come out. Yeah. Similar things to what you’re thinking about prescribing in primary care.

Matt: But, but essentially what I, what I’d want to do is, if we are going back to Fred, I’d want to have a clear understanding what the mechanism of the pain is. So, we’ve gone into sort of have that conversation about the, you know, the, how, how he’s described, the pain, the nature of the pain, the impact of the pain, what helps the pain, what makes the pain worse.

Um, sometimes those objective scores. So, if, if zero to 10 is, is no pain at all, is 10 out of 10 the worst pain you could imagine, what sort of score would you give it? Um, give, you know, at its worst, at its best, you know, that gives you a rough idea.

Sarah: I mean, this doesn’t sound to me like a quick visit to see Fred, which, you know, on some days is fine, some days isn’t.

So are you better if you. Because families, oh, you go out and you know, he’s in pain. We need to sort something. We need to sort something. and, and I also think that sometimes there’s a building up of trust, isn’t there? Um, and so I’m just wondering whether we are better to go a couple of times and not, do not try and save the world on the first occasion and build up the trust and come back rather than going in and say, wow, okay, we’re going to do this, this, this, this, and this, and we’re going to describe this morphine and this and this and this, and then come back and go, oh, some of these things have got side effects.

Matt: Sarah, I think that’s your wisdom as a GP coming in and, and, and maybe my practice in palliative care medicine is sometimes I’ve got one shot, I’ve got one chance. you know, and I’ve practiced in cities, you know, I’m in Manchester now practicing cities, practiced in rural Wales sometimes where it’s an 80-mile round trip to see a patient.

Yeah. And so there are, it all depends on your relationship and it’s back to that thing of individualising. But one, one thing I would say is that if you invest time early on in assessing the pain syndrome and getting a real understanding about what the pain syndrome is, you’ll probably save time in terms of backwards and forwarding.

So, I think that that’s, that that assessment actually can be condensed into a quite short sort of timeframe. And I know that there’s a, probably you’ve got a window of opportunity of 10, 15 minutes when you are with them a bit longer.

Sarah: You’ve probably got a bit longer, if you need and, and if you need to, you do it. But I suppose, yeah.

And it comes on to other bits, doesn’t it? Which we’re going to come on to, but then some of the, sometimes from my point of view, some of those first visits aren’t the time to do any particular advanced care planning or anything. Absolutely. I think, you know, you often need a bit more time with a family to be able to do that…

Matt: And that’s the real strength. See, I think that is the real strength and what we should treasure about general practices is the currency of the relationship you have with families. Yeah. my general practitioner colleagues really deeply understand the context in which patients exist and patients are, yeah.

Sarah: You often know other, not always, but you will sometimes have met, met and looked after other members of the family or, um, and, and know something about them as well, which makes a difference when you see them. And I think also think people quite like seeing somebody that they absolutely seen before and are likely to see again.

Which is why I think most practices try and keep some continuity with palliative care patients in trying to work things out. Can I just one more thing I’m ask you about this. Mm-Hmm. Um, patches. I still find patches difficult.

Matt: Patchwork quilts? Yeah, patches. So, fentanyl patches, buprenorphine patches.

Sarah: I find dose altering very difficult because of the lag.

Matt: Yes. So, you might, you might notice my right eye twitching a bit at the note that the, at the, at the mention of, patches. So, so look, here’s, here’s my view on, patches.

Transdermal delivery of drug is, you know, it’s convenient for a lot of patients. They don’t have to, you know, remember taking their analgesia for a few days or a, or even, even longer with the buprenorphine patch, but they are problematic in when pain is unstable. So, if you are at a, if you’re in a situation where patients are, where their pain is unstable, we haven’t got a sense of their level of opioid requirement, then patches aren’t the thing to use to, to try and get that level right.

And some of the doses of opioid delivered by patch, the morphine equivalent can be, can be significant. Yeah. So, you know, 50 milligrams of 120 milligrams of, of morphine a day equivalent, which is quite a hefty dose with that sort of a step up. So, so look, what I, what I would tend to do is patches are a useful alternative if, when pain is stable, and particularly if you’re switching from one opioid to another.

Um, fentanyl is particularly useful if your patient has got renal impairment. Yeah. Because, morphine, as we know, is excreted, metabolites of morphine are excreted by the kidney. Kidney function is poor, so if the EGFR’s going off, those metabolites can accumulate and cause Opioid induced side effects like hallucinations, visual misperceptions, myoclonus, and that sort of thing.

So, switching to an alternative opioid can be helpful.

Sarah: And it wouldn’t be the thing to be doing with Fred.

Matt: Wouldn’t be the thing to do. No, I think we’re getting a sense of where Fred is with his pain. Yeah. Yeah. I, I, I’ll be frank, the last thing I want to do is to slap a… Yeah. I’m slapping my knees as, as I say, that’s demonstrated by strength of feeling.

The last thing I want to do is slap a fentanyl patch on, on Fred. Uh, what I want to do is get a sense of the burden of the pain symptom he’s got. Yeah. The nature of it, the impact it’s having on him and then the constellation of other symptoms, which because he might be constipated as well and you know, he might have been popping co-codamol before we go this you might be constipated as well and we’re prescribing other drugs.

We’ve got to be very mindful of constipation, you know, if there should be a law, there should be a law.

Sarah: There should always be a reflex prescribing thing, they like reflex testing.

Matt: Because if you are prescribing opioids, you are responsible for this patient’s bowels now. I think that’s the, uh, that’s the take home message.

That’s a big responsibility. But also recognize that look, we used to have this approach, didn’t we, called the analgesic ladder. Yeah. And I think the general view now is that if somebody’s got severe pain, we don’t want to be dilly dallying with bits and bobs of co-codamol. If they need a strong opioid, they need a strong opioid.

And so, we need to have that morphine conversation as well. So, this is where the conversation about pain can sometimes be a longer conversation because we talk about morphine to people, that has significance.

Sarah: I was really surprised, I was, I went for a walk with a friend a couple of weeks ago who is a professional person. Um, and I was, my father in law’s not well and he’s just started on some RMOV, and she was saying, well that’ll hurry things along, won’t it? Absolutely not. No. Not. And I was really surprised, I was like, yeah. So, this is the, these are the myths. Yeah, we love a bit of myth busting on the podcast. Oh, let’s do some myth busting.

Yeah, do some myth busting.

Matt: I’ll do some myth, busting then.

So, morphine is a really effective analgesic. If we’re prescribing morphine, it doesn’t mean it’s the end. It just means, um, we want to prescribe you an effective analgesic. Um, it’s kind of linked to this myth that if you are, if palliative care is involved in your care or treatment, this’ll hasten things.

The evidence actually says that if you’ve got a palliative care team working alongside you, uh, supporting you with quality of life and your symptom control, the data… and there was really interesting study published a few years ago looking at lung cancer and palliative care. Patient’s survival was extended and their quality of life improved.

So, so morphine is an interesting drug. Sometimes I phrase it’s easier to explain when people are already taking actually codeine or co-codamol. Yeah, because codeine itself doesn’t have any analgesic properties. Codeine is only analgesic because the liver converts it to small doses of morphine. So actually, say you’re only, you’re already taking a small dose of morphine. Um, and then you get your, because you have your slow metabolizers and then you’ve got your fast metabolizers, your ultra-fast metabolizers. But about 10% of the population can’t make that conversion and so have no analgesic effect from codeine at all. It just makes them constipated. There you go.

Sarah: There’s a, somebody’s looking for interesting fact. There, there definitely. They, they, we got there eventually.

Matt: We did. We got there eventually. Very so, you know, fears about addiction, will I get addicted? Yeah, no. You know, addiction is that triad of use of something despite harm to yourself or other people can compulsive drug seeking behaviour and loss of control.

And we don’t see that in patients where we are using, um, morphine to treat cancer pain and, and we are titrating the dose against their pain. So, you know, maybe if. If Fred had a constant pain, let’s, let’s, should we pretend we’ve characterized the pain? Yeah, let’s characterize that. So, so look, yeah, let’s, let’s, let’s get down to brass tack.

So, we are reassured that this isn’t spinal cord compression. So, we’ve done a, you know, good history and we are reassured that this isn’t spinal cord compression. We, we think that this is, he’s probably got some chest wall invasion that fits with our understanding of the scan. He’s describing pain that is interfering with his sleep at night and, um, pretty constant during the day, but it’s made worse when he moves.

Um, at the moment he’s taking some co-codamol, which is just taking the edge off things, but’s kind of taking it down from, you know, an eight to a six maybe, and maybe scoring his, he’s not a complainer. He’s not a complainer, he’s not a complainer. And, and you know that because you know Fred. Mm-Hmm. And that’s really important, isn’t it?

So, Fred doesn’t complain, so he must be uncomfortable. He’s putting a brave face on things. He’s grimacing. Mm-Hmm. Um, and, picking up those nonverbal cues are really important – you can’t do over the phone. You can’t do over the phone. So, so look, I’m, I’m, and I, I would be thinking about a regular small dose of morphine, and if we know he’s, he’s reassuring to know his renal function’s okay. So maybe start off with, you know, 10 milligrams of slow-release morphine with, um, 2.5 milligrams or five milligrams of oral morph, oral morphine for breakthrough pain, immediate release break, uh, morphine for breakthrough pain.

Sarah: And what, what are you going to do to take responsibility for his bowels?

Matt: Good question. You know, you’re not letting me off the hook with the bowels, are you? No, no. I’m, I’ll have taken a history. About his bowels. So, I’ve understand a lot more about Fred’s bowels, but then I will, um, craft an individual bowel plant, bowel plant for him. And it might include something like some regular, I’ll tell you what, it won’t include, it won’t include lactulose.

Okay. lactulose goes nowhere near my life. Okay. And it just doesn’t, it’s sticky. It’s, it’s, I’m of the firm view as well, Sarah, that every doctor should have sampled the medicines the medicines that they prescribe patients. Seriously. That would be quite seriously that, you know, that you should do anything you prescribe, you should have sampled it and, um, the lactulose would definitely be off there.

Would it, have you ever had lactulose?

Sarah: I might have done when I had kids.

Matt: When I next see you, when I next see you, I want you to have said, I’ve tried some lactulose. So, it’s sticky, it’s unpleasant. And it only really works if you drink loads and loads of water with it. Okay? And if it doesn’t, it just sits in your bowel and ferments and can give you risks, giving you colicky pain and windy.

Sarah: Nobody in this room is now ever going anywhere near a bottle of lactulose.

Matt: Well, look, and I’m not saying it’s, it’s not toxic. It’s, it’s sort of, you know, but I, I’m talking about my preferences. Yeah. And my preferences. I would much rather somebody, sip on some movicol regular leaf. They can use that. Or, and or use a stimulant, maybe use some, some sena and probably use a stimulants and a softener.

But the reason I, I want to know about Fred’s bowels is that if he has been popping co-codamol willy-nilly, um, then he may already be very constipated and he may need a bit of uncorking. So, so yeah. So, I’ll, I’ll have a look at those, those bowels. But then along with the morphine, I’m also thinking to myself, is there a role potentially for, you know, a short course of anti-inflammatories?

Maybe. Yeah. Yeah. But then I’m thinking about GI side effects, renal side effects. But pain is typically not either just nociceptive tissue damage or just neuropathic nerve pain. It’s often a mix. Yeah. So, I may also be thinking in the back of my mind, Fred might need a combination of, opioid, an adjuvant and I might choose something like Pregabalin, if there’s no contraindications at a small dose, start low, go slow in terms of titration, and if there’s no contraindications, maybe a short course rather than a lot, you know, continuous use, but a short course of anti-inflammatories.

UP TO HERE //

In some situations, if the pain is really severe and I think there’s some nerve compression and there’s no contraindications, I might use a short course of steroids, just a short pulse of steroids, but that’s really in my back pocket if I’m feeling really, really stuck. And, and also, I think along with that, that would probably involve a conversation with the oncologist about, look, is there any targeted radiotherapy that could potentially help with this pain syndrome?

Because steroids are really potent, toxic drugs. And you can get into all sorts of problems with glycemic control and, and proximal myopathy in all manner of stuff. Steroid induced psychosis is a problem, but they can be a get out jail card if you’ve got particularly severe neuropathic pain.

Sarah: Right. Okay. And then the other thing I just wanted to talk about was, is it, so this bit that has been driving you night for years, um, anyway, you go out to see a patient and they’ve been at their hospital appointment a couple of weeks before. You can see that they’re really quite poorly. Um, and you go out and, and Fred’s wife here and we wrote this into the module says, “right, well.

I need to get him to eat, and he won’t eat. The hospital have said that if he gets stronger, they’ll see him again in six weeks and he might be able to have some more treatment”.

So, you’re sort of, there’s a whole thing, and I think it probably comes back to what you’re saying at the beginning about getting everybody on the same page.

And sometimes, sometimes there’s just a little bit of patients haven’t understood what they’ve been told. Sometimes husband and wife have understood completely different things.

Matt: Yeah absolutely.

Sarah: And that’s, I think that’s one of the most difficult situations you have where people aren’t on the same page as each other. Certainly not on the same page as where I’m from, looking at the notes when they go out. What’s your approach there?

Matt: Gosh. So again, I think it’s recognizing that every situation is different, isn’t it? And having as much understanding about that individual circumstance as you can have.

One thing I always remind myself is that what patients often remember is actually how, how a consultation made them feel, rather necessarily what was said. Yeah. So, I, I think that, look, I work with oncologists who, who have, you know, really difficult job in terms of communication, particularly around issues around hope and hopelessness.

And that end of treatment conversation I imagine is a really difficult one. Yeah, yeah. I’m sure it’s, yeah. And, and sometimes it’s framed in different ways. I think if you are in any doubts, I think if there are doubts about what exactly was said, because sometimes, sometimes there is a reality that actually, some, that we can re, you know, if the situation changes, then we’ll revisit that in, in another consultation.

So, if you are able to, and I know it’s not, not easy, but if, your relationship with the oncologist is one where, you can give her a ring or give him a ring and, and say, can I just check what was, what was said in, in this consultation? I mean, obviously that’s ideal, isn’t it? Yeah. Because then you are on the same page, the oncologist is on the same page.

Sarah: I think it’s, it is more difficult often when the, if the family aren’t necessarily on the same page where you’ve got different members of the family being on having different ideas as to what’s going to happen. The thing that’s quite stressful for patients and for carers is this idea about how much you should eat, how much you should push them to eat. All of that sort of thing, I think is…

Matt: So, let’s talk about food. Yeah. Let’s talk about food and let’s talk about food anxiety. Yeah.

Sarah: And it’s a big problem, isn’t it?

Matt: Yeah. And, and do you know what I’ll sometimes say to families is, can we just have five minutes of honesty about food? Mm-Hmm. And because, preparing food, making food for many people is an act of love.

Yeah. And it’s got huge cultural significance. Um, we celebrate with food. I. food is, is, is part of everyone’s life. It’s something we look forward to. It’s something that, has a deeper meaning than just the intake of calories. Yeah. Or, or we’d all be walking around swigging these shakes that, that they do in Ancoats.

So I, I think that just acknowledging that food, yeah, food, preparing food is an act of love, but when you are unwell with cancer, you might not, you probably won’t be feeling like you want to eat. And, and so let’s just call out that there’ll be this tension between the person wanting to express, often express their love through the preparation of food.

Yeah.

Sarah: And almost any food that people would…

Matt: Absolutely. But also, that desire that, how can he expect to get stronger if he doesn’t eat the food? And then the patient who might not be feeling that they want to eat. So how do we square that? And actually I think you’ve just got to call it out.

Yeah, let’s not, you can’t dance around it. Let’s just call it out. Because the, the thing is if you’re, you know, not wanting to eat that sensation of anorexia, not wanting to eat isn’t painful or uncomfortable per se. But forcing yourself to eat is painful and uncomfortable. Yeah. And so, we’ve got to be clear on that.

And I think it’s about coming to a compromise of saying, you know, look, there are certain approaches that are, we know work. And I’m not going to go into, you know, there’s evidence out there, guys, if you want, you want to look into it about what, what, you know, what drugs can help and what, you know, what, what drugs can’t help.

And I don’t want to get too much into the drugs drug thing. Mm-Hmm. Um, one thing that we do know is that although steroids can stimulate the appetites, that’s a short-lived thing. So long, long, long, you know, long courses of steroids, then they’re running into problems with proximal myopathy and glycemic problems.

So, so look, I’m not going to get too much into drugs, but what I would say is, is small amounts of food offered regularly, and it’s okay to say no, but also, you know, thinking more about calorie dense food, which is a different way of thinking, isn’t it?

Sarah: Totally, yeah.

Matt: Yeah. I mean, I just, before I came up to the podcast, I just had a cannoli in the coffee shop, which, you know, it, it’s completely broken my…

Sarah: Do you think we’d be allowed to prescribe them?

Matt: Well, I, I, let’s do it cannoli’s on the NHS, it started here. So, but that is, that is such a tasty, calorific, dense morsel that, you know, it’s that sort of thing. Something, and it’s in individualized. What is it that, because flavours taste change as well.

I, I was very fortunate in my early career to work with a chef at a Mary Curie Hospice in Liverpool, and he, he…

Sarah: I think I went on a course there…

Matt: Did you? In Walton?

Sarah: Yeah.

Matt: Yeah. So, he, I remember him talking and he prepared some, just, you know, he did simple things like stir butter into soups where like triple, which kind of trebled the calorie intake, you know, or, using certain flavours, to just make food a bit more tempting.

So small amounts, often using small plates. So not presenting people with big plates because the situation we don’t want to get into is one of food, food anxiety. Where actually even the thing, even the thought, the smell of food then makes someone anxious because what they’re preparing for is the conflict of, I’ve made this, the least you can do is eat it and then think, well, I’ve got to force this down.

It’s making me uncomfortable and painful. Because then what happens is you get that negative cycle of anxiety, performance, anxiety, dread, more stress, you know, somebody down, it’s making something.

Sarah: Yeah. Then they, the patient feels bad for not eating.

Matt: Yeah. Yeah. But also, I, you know, I may, you know I appreciate this being a longer consultation or maybe a consultation at, at a different time.

Talk about the difference between anorexia and cachexia. So, the anorexia is, I don’t feel like eating. So that’s about, you know, calories in and how you can use techniques with either different ways of eating, fortifying foods, calorie dense foods, or even the supplements. Although the supplements, you know, again, we should be forced to, any, any supplement we prescribe, we should be forced to…

Sarah: There used to be an eggnog fortisip…

Matt: Eggnog fortisip? Just have eggnog… You just have eggnog. Eggnog. Just have eggnog. Why have an eggnog fortisip?

Yeah. So, fortify. Okay. And then, but cachexia is different. Yeah. So, the anorexia reduced calorie intakes, you lose fat. Cachexia is actually a change in metabolism caused by inflammatory, um, changes related to the cancer.

And that leads to muscle loss of muscle bulk. And actually, you know, pushing calories isn’t going to necessarily make an impact on that. So, I think that my, you know, just talking about food, I think the thing is to call it out. Call out the fact that we’re looking at the same garden through different windows from the perspective of the carer expression of love. Want to build you up. From the expression of the patient, I might be anxious about food. I don’t think I can manage this, but I don’t want to let you down. Yeah.

And you giving people permission to say it’s okay to, to have small amounts regularly, but there’s things we can do to put you in control because very often people will feel a loss of control.

Sarah: Yeah. Yeah. So, the last thing I just wanted to talk about, because I left the most difficult thing till the end is diagnosing and discussing dying. Because I think that’s a really difficult one, isn’t it?

Matt: Yeah, it is.

Sarah: Um, recognizing it, supporting patients. What, what would be your advice for us on that?

Matt: Gosh, so again, individualize. Individualize. it used to be the kind of the measure by which doctors were judged before we had the tools to do much of a difference in terms of alter the course of disease, that thing about prognosis.

Um, so again, it’s having that really sensitive, gentle, compassionate conversation with a, with, with patient and family, maybe about their expectations. And then one thing I find useful is to frame it in terms of a trajectory. So often, when, when patients ask me the question, I will say, I, I’ll try and be as helpful as I can.

Is that okay? So always give a patient a chance to say, no, I don’t want to take this to the next step. Yeah. So, the analogy again of walking down those stairs Yeah. Before you take the next step down, check. Is it okay if I take this next step? And often I’ll frame it in terms of how are things now compared to maybe a week ago, two weeks ago, a month ago or three months ago, and have the patient be able to describe that trajectory of decline.

Um, things may be stable, but they may say, well, actually things have changed a lot this week. Or my, you know, Fred’s wife may say, well, actually Fred was up and about most of the time, a couple of weeks ago, but then last week he was spending most of his time either in the chair or in bed, and actually he’s not got out bed for two days.

Sarah: I do it the other way around with depression. So, I speaking to somebody who’s depressed, but we’ve started treatment and they’re starting therapy.

Matt: That’s really interesting.

Sarah: I always say it’s, if you think about how long it’s taken you to get down to there, we can’t expect you to get back up from there overnight.

But I’ve never done it the other way round and just sort of, just sort of saying, actually, if you look at where you were a week ago or two weeks ago. Yeah. If that decline carries on. Yeah. Yeah.

Matt: I, I, I found that helpful. Yeah. And, and then I think what I tend to do is talk in terms of hours, days, weeks. Yeah.

Once rather than the numbers. Absolutely. So, because sometimes if you talk in terms of numbers, how long’s left, doctor, four days, you know, I’ll, I’ll get my diary out.

Sarah: Yeah. I’ve spoken to patients who said, well, he was given four months and now he’s at six months and he doesn’t know what to do with himself.

Matt: So, so, so if, if, if we’re in a situation where we’re talking about a deterioration where somebody’s in bed.

And we know, so if, if Fred had progressed, for example, he’s now, he’s got liver mets, he’s quite jaundiced. Um, we know this is irreversible. He’s deteriorating day by day. Then we’ll, we’ll, we’ll talk about taking things day by day. Yeah.

Sometimes things can change suddenly and unexpectedly, but we’re taking things day by day and then have that conversation about the natural um, course of, of dying where people will become more drowsy, more sleepy, less able to engage in conversations or doing things that they want to do, and then gradually, gently slip into a, a more of a sort of sleep like state where they may be having fewer moments of lucidity.

We always talk about being aware that people may be aware of the voices and sounds around them and may draw a lot of comfort from familiar voices, familiar sounds like the radio or music they like, and then become so deeply unconscious and so deeply unconscious and relaxed that what we’ll then see is changes in their breathing.

And sometimes if they’re unable to cough or clear their throat that you might have hear that sort of breathing against any moisture at the back of their throat. It doesn’t bother them. It doesn’t bother the patient.

Sarah: It’s interesting one that…

Matt: …a bit like snoring. You know, if I if I snore, it doesn’t bother me!

Sarah: I’ll ask Rebecca about that next time!

Matt: it’s confidential.

Um, but, so, you know, the family sometimes will worry about, well, if someone’s deeply unconscious, how will we know whether they’re in pain or uncomfortable? We look for non, those nonverbal cues, such as changes in, in facial expression, grimacing. and then gradually what we’ll see is changes in breathing as the breathing slows.

Sometimes the changes in skin colour and, um, as the breathing pattern changes, lengths of between breaths may get longer and then eventually breathing will stop. So normal dying is something. So, Catherine Manix, who’s a, who’s was colleague of mine, an author now, has spoken about this really well and, and written about it.

And I’ve drawn a lot of my understanding even at this stage in my career from reading what she’s written about ordinary dying. There’s something really good she did with the BBC, which is accessible on the BBC website, about what ordinary dying looks like. and I think that’s a public health message.

I think that we need to have that conversation.

Sarah: Yes, we you go to the, well, I didn’t enjoy them. You go to the antenatal classes, don’t you when you talk about birth, but you don’t do anything…

Matt: Well, there’s a, there, there are movements now which are put in conversations about death and dying, more to the forefront.

And, um, they are probably conversations we need to have around the kitchen table rather than the bedside.

Sarah: Yeah, totally. One last thing, can you just describe the difference between preferred place of care and preferred place of death?

Matt: Gosh, I guess preferred place of death is, is where I would prefer to spend the last hours of my life. Preferred place of care is where I, where I like to be most of the time. Yeah. Um, hospitals are still the major providers of terminal care, sadly. Um, I think the important thing about that whole preferred place of care, preferred place of death is that people are allowed to change their minds.

Yeah. It’s a continuum.

Sarah: And they might be different places. I think that’s the thing.

Matt: And they might be different places. So, my preferred place of look, my preferred place of care. You know, if I had something complex wrong with me, it might be home, but actually I’d want to be, I may want to be in the ward that looked after me.

Yeah. And we often find that in haematology, patients with haematological conditions will be actually, they want to be cared for at the last stage of their illness, illness, surrounded by a team that they’ve trusted in, and then all their, all, all, all their disease journey. Mm-Hmm.

Sarah: There you go. That was a nice easy question to finish.

Matt: Yeah. Thank you.

Sarah: So just to summarize, I think that the main things I’ve picked up from that is that it’s really important to have individual conversations with your patients and their families to understand where they’re at and where they’re going through things.

Yes. I think that we, I absolutely now feel a personal responsibility for the bowels of everybody I prescribe opiates for, which is a positive thing.

Matt: Great.

Sarah: And I think the other thing was really that, just that idea that actually if people are asking you to prognosticate and look forward, that actually that whole thing about looking back and seeing what they’ve been like over the preceding few weeks or months might help you illustrate them where the next few weeks, days, months might be going.

Matt: Yeah. I, I found that helpful when having difficult conversations about the future.

Sarah: Yeah. Thank you, Matt. That was really, really interesting. hopefully we can do another podcast sometime soon if Rebecca decides to go away again…

Matt: She’s away all the time, so, okay. Yes, that’d be super. I do, you know, I’d really look forward to that.

Sarah: Yeah. Thank you. We’ll, another one. Thank you.

Rebecca: So, that’s it for today, and thank you to both Sarah and Matt. Thank you for listening to this podcast from Gateway C. All reference studies and guidelines are in our show notes. Thank you to Matt again. Thank you to Sarah again. and our producers, Joe Newsholme from Rethink Audio and Louise Harbord from Gateway C.

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