Hello I'm Lynn Weekes and today we'll be talking about patient-centered care for people using opioids for their chronic pain and the importance of language. I am joined by Denise Lassam, Koo Wee Rup GP Ferghal Armstrong, and Coburg community pharmacist Jarrod McMaugh, Jarrod is also president of Chronic Pain Australia.
Lynn Weekes (LW): Denise, I think you prefer to be called Rustie.
Denise “Rustie” Lassam (RL): Hi, I do.
LW: Let's start with you, because you have a long personal experience of chronic pain. I think your first back surgery, it was in your teens, so tell us your story.
RL: Hmmm my back surgery was actually in my early 20s but [the] pain started for me in my teens, lower back pain, I was about 15 or 16. I went to the doctor and was sent to physiotherapy and those kind of awesome things. I had traction and hmmm those were the days, but I was given also opioids, a panadeine forte for pain and valium for muscle spasms.
LW: And that was in your teens?
RL: That was when I was 16.
LW: What happened after that?
RL: Not very good things. Well it's a very long story but as life went on, I became dependent and addicted to those drugs. I've had three lots of surgery over the years, all the while being very addicted to them and ruining relationships because of my addiction. I had a baby later when I was 39 [years old] and he was developed in a bubble full of opiates and benzos. And for me, every day when I had a shower, I put my hand on my belly and apologised to this growing baby because I meant it, I was sorry. But I did not know what to do. All I knew what to do is to keep taking, I had to keep taking, my brain would scream for them.
LW: And the pain?
RL: Well, some things helped I think but they tried lots and lots of things with me, but for me it was a no-brainer: something that took 20 minutes to half-an-hour and made me feel alright about the world, as opposed to a month in the swimming pool here to get similar results was a no-brainer. I think I’m a perfect storm for addiction.
LW: Yes and when you had a young child as well, that must have been even harder. How did you turn it around?
RL: That's a really good question. Well, what I can say about that is it wasn't just me, I had like a team of people around me which is obviously what I needed. But [I met] a doctor in the Latrobe Valley in Victoria. I was used to travelling with all these letters and x-rays as you do, and he didn't even read them I don’t think. He told me what he was going to do, as opposed to me going there and saying: this is my story I need this this and this. He was not interested, he said: yeah, you can be my patient and this is what I'm going to do. And that was like, it's very strange, but it was a load off my shoulders as well. I was introduced to a pilot project at St Vincent's [Hospital] to assist people to get to get off benzos [benzodiazepines] and I was a guinea pig for that project and that was in 2009 and I haven't had a benzo since. Nothing, anything.
LW: I love that journey, did you experience much in the way of stigma do you think? And maybe did you feel that yourself?
RL: Oh gosh no. Yes of course! Still to this day actually. I think stigma is one of the biggest things that had me not asking for help. The stigma in the community plus what was going on in my own head, to admit to being addicted is, I could think of other things I rather admit to actually.
LW: So in fact that doctor that didn't actually address that with you in a way, he just went on and said: oh we're going to manage this, it's not something we need to discuss in terms of stigma. It helped you get past that?
RL: Absolutely he did, he knew what to do, he knew how to treat me, he knew how to treat pain as well as addiction. He knew how not to fall under my spell, because over the years of course, I developed some pretty awesome skills at manipulating and I can say all this in hindsight of course, not at that time.
LW: That’s interesting, I think that issue of stigma is something that's very hard to grasp if you haven't really experienced that. We know it exists, but you don't know the full weight of it on your personality, on your personal relationships, on your employment and those things unless you’ve really experienced it. Jarrod, can I come to you because I think it's often the pharmacist who might be the first person or the first health professional to see a person having problems with the prescription medicines? The person comes to you to have their prescription dispensed, how do you in your approach make sure you help [and] not hinder that patient?
Jarrod McMaugh (JM):
Yes, I would agree that a pharmacist may be the first person who is seeing a person receiving medications in a way that might not be safe. How that conversation is had is really critical. I've seen a number of times where a pharmacist will have a fairly blunt conversation with somebody and you won't see that person again and that person is not being helped. The conversations need to centre around the benefit of the person who's in front of you. A lot of the time, a pharmacist may take on an opinion that: well I'm here to protect the medicines from being misused. As opposed to: I'm here to help a person with the best outcomes for their medicines. And if pharmacists can keep that frame-of-mind then that goes a long way to talking to a person as a person, not a subject or a problem. Those kinds of attitudes really appear in your language and your body language and how you actually help the person or hinder them.
LW: I think a lot of our pharmacy training is about thinking about the medicine as the first thing and so it does take a little bit of an effort to get over that.
JM: Yes and it's a fairly natural response when you've gone through four years and an internship thinking about medicines, and sometimes you lose sight of the people that you're there to help. So if you if you can always reframe your point-of-view to be about assisting people and it goes a long way to getting the right right frame-of-mind, so that you don't slip into language that's not helpful.
LW: Ferghal, as a GP you also have internalised views about using opiate medications for example and other things. Your own experience, your training, your world view adds to that. How do you manage that yourself, is it something you're aware of, how do you think about it?
Ferghal Armstrong (FA): Well first of all, doctors are in a very privileged position because they sit in a consulting chair. They sit in a consulting chair because they've got resilience and that resilience has been given to them by their stable upbringing, their parenting, their childhood. They've had educational opportunities and then they've had employment opportunities. And then they're faced with someone with an addiction problem or substance use disorder who hasn't had that benefit. So addiction and substance use disorder is not a moral choice, it's a chronic relapsing illness that needs to be treated like any other chronic relapsing illness. And so the stigma that Rustie's alluded to needs to be suppressed completely and utterly, it has no room in the consulting room, it just should not be there. And physicians need to understand that they're in the consulting chair because of advantages that they had that their patients didn't have.
LW: I think that's a really interesting point and it does really help you frame the whole consultation if you put yourself in that place. There's a a nice article from a US-based specialist and she talks about how we frame both the consultation and our own thinking in how we manage patients and she says, I'm going to quote this: “How we frame our thoughts about chronic opioid therapy greatly influences our ability to practice patient-centred care. Even providers who strive to be non-judgmental may approach clinical decision making about opioids by considering if the pain is real or I can trust the patient. Similarly, providers often find themselves making deals, [a] positional bargaining approach so reframing the issue can allow the provider to be in a more therapeutic role. Providers can use a benefit-to-harm framework and this approach focuses decisions and discussions on the treatment not on the patient.” I think that's an interesting way to think about it, if we bring this back to benefits and harms, moving it back to a conversation of safety. So Ferghal does that resonate with you?
FA: Oh absolutely, the whole issue of prescription opioid and benzodiazepine management has to revolve around safety and with the advent of SafeScript, the discussions on safety are actually so much more informed. So for me, SafeScript is now a tool that shines a light on the safety issue around prescribing for patients. I like the point that the author is making: that judgments about whether or not the patient’s in pain and whether or not that patient's pain is real, that's a very telling sentence. Because to say that somebody's pain is not real it's all in your head, well quite frankly, all pain is, all pain is experienced in one's head. I think in the context of use disorder, the boundary between nociceptive pain, physical pain and psychological distress is very blurred. I think the skill in any consultation is to actually make that discussion or broach that subject with the patient and to be able to have a meaningful discussion onto the way forward, with the information that is available to one from SafeScript.
LW: What about for the pharmacist Jarrod? Because as you said, they need to be thinking about what's right for this patient, the person in front of them, so that's a big step forward, then talking about harms and benefits. How would that work in the community pharmacy?
JM: One of the first points would be that if you think you're speaking to a person and you don't believe what they're saying, then you should really consider what is it about this conversation going forward that is going to be productive. If you are trying to have this give-and-take with a person and you don't believe anything that they've got to say, then you're never going to end up anywhere productive. If you really feel that that's the issue, then then you need to raise it and say: I'm concerned that this prescription is being used in this instance, not for pain but for you know, to help with a dependence or an addiction in this case. If you can't have that kind of discussion with the person, then you should consider how your training is being put into your practice. Realistically, I know a significant number of people who use opioids for pain and a very large number of people who have ongoing or previous substance use disorder and if you think that you can judge a person from when they walk in or what the presentation is like and which one of those categories they fall into, or both, then you’re really very very skilled or you’re kidding yourself. So that I think that one of the first things is that pharmacists need to understand that if you've got a person in front of you and you don't trust them, then you need to consider what it is about yourself that is putting yourself in that position.
LW: I think that's really helpful because that is really part of the reframing isn't it, about you being self-aware as well as being open to the person in front of you. Part of the reframing also includes the use of the right language and that will help both the patient and the clinician to have a conversation that's productive. Language should be non-judgmental and non-stereotyping but we know that both the patient and the prescriber will hold beliefs and attitudes, so we don't want those to act as a barrier and having the right language I think helps them. Interestingly, Pain Australia has some new guidelines to help clinicians to find the right words to create a positive experience for their patient. There are some helpful suggestions about alternative phrases they might use but also a note to say: actually check in with the person because what I might find not to be the best words, might be something that you, Rustie, might think was a perfectly reasonable way to express something. So did you have any experiences in your journey where people used words that really rub you up the wrong way?
RL: That was nice language, I wouldn't have said: rub me up the wrong way! Yes, I certainly have and that's part of the stigma I think for me, using the word “addict” is annoying because I'm a person with addiction, I'm much more. An addict is like a “full stop” after you and then people have their own ideas about what an addict is. So [saying] person with addiction issues or dependence adds a bigger mouthful but it's a bit more respectful. Another word I don't like is “clean”, where people say: I've been clean for 10 days or 10 weeks or 10 months or 10 years because when my son was little and his hands were dirty, we'd clean them. So the opposite of clean is dirty. So if you're someone with addiction, that's still engaged with your drug of choice, then you're dirty because you're not clean. Yes, so they're just those types of words that I find a bit challenging.
LW: Yes and how do they make you react, do you feel annoyed, do you switch off?
RL: That's an interesting question, it just makes me sigh, like I'm really huge on the language around addiction and that we need to change it, we need to shine a torch on it. But when I hear words like that, it's just a sigh, like this is going to take generations I think to change and for people to drop the moral preaching. about it.
LW: Yes so Jarrod, this is coming to you, you were saying you know in a pharmacy you want to have that Conversation. What sort of words would you use, how do you do it in a busy pharmacy because it's not the easiest environment for a conversation that may need be quite sensitive?
JM: Yeah absolutely, I don't think so much about words that I would definitely use, [rather] I try and avoid specific things. So as Rustie was saying, you don't want to describe somebody as the condition that they might have. So if you're talking about somebody who has diabetes and you said they're diabetic, you do make it seem like that's all they're about and you're only interested in, well, maybe they're here with diabetes and I'll deal with that and they'll go away. So trying to ensure that the language that you use is not taking away agency from the person who's in front of you. And I think another really important thing to consider for health professionals is that when you are talking with a colleague, if you use words that are very clinical those will slip out when you're having a conversation with the person. So we talk about pain and there's a concept called “catastrophisation” and if you use that terminology about a person, first of all, you're taking away the real experiences that they're having but you can very easily slip that into conversation without intending to. And suddenly, you're basically saying to this person: your experience with pain it's not as bad as you think it is and you're making it out to be more than it really is. And that's the end of that conversation and that relationship you'll probably never get that back if you're not careful how you use terminology. So it's a matter of ensuring that you are always seeing there’s person in front of you, treating them with respect and then when you're talking about people as a concept, that you try not to use overly clinical words in that situation as well because they'll get into your dialog and they'll pop out when you don't want them to.
LW: And what about in that busy pharmacy, how do you make space to have that sensitive conversation?
JM: So most pharmacies these days have either a private consultation room, or certainly will have a space that has been more isolated from the rest of the people who are waiting to be served or provided with advice. It's important to remember that if you say to a person: listen we're going to have a conversation, we go to this consultation room. The person might say: why am I being singled out and taken into the room when nobody else is waiting here has been taken into a room? So it's very much about saying to a person: listen we've got some things we need to discuss, it might take a little bit longer than normal, if you'd like we've got a space over there that you can go to and we can sit down and talk rather than being here at the counter or further away in another area that's more quiet in the pharmacy there? So space and privacy and consideration and then also remembering workflow. I mean, if you feel that you need to give more time to that conversation than your current workflow will allow for, then in a short-term calling other staff to assist you [and] in the long-term, look at how your workflow is going so that you can afford that kind of time where it's needed.
LW: Okay sounds good, what about for you Ferghal, in a general practice? How do you think about language?
FA: Well I agree with what Jarrod has said, I try and avoid words and there are certain words, Rustie, which I think you would agree are really terrible. So the word “drug addict”, “druggie”, these are the two words that I tried to expunge from my vocabulary and I prefer to use words and phrases such as: “patients with” or “patients suffering from”. I prefer to use “substance use disorder”, I’m trying to actually bring myself off the word “addiction” and my most favourite phrase is “substance use disorder”, it is less stigmatizing. I think I agree with what Jarrod has said, you know, we have to deal with people, we don't deal with diagnoses.
LW: Yes, so it's a whole person, that's good. So I guess on that theme, how do you make a decision with the person about what their treatment options might be, whether that's to start an opiate for chronic pain or to move on to managing a problem that might have come from taking prescription medicines over time? Rustie, you started by talking about the fact that not allowing you to make be too involved in the decision at the beginning was actually important, because you were going to manipulate that decision. So how do you manage that but at the same time, respect the person and actually make sure they have the right amount of say in the decision? Maybe you first, Rustie, tell us your thinking about that?
RL: For me, I think don't be pussyfooting around us, [make it] black and white, not too much information especially if the brain’s craving. And use, you know, simple sort of language. It was really important to me that I found a doctor that said “no” and it was taken out of my hands, because it was always [that] I had taken the reins. I was the boss, I would go somewhere and say: this is what I'll have. And I would do everything in my power to make sure I got it.
LW: So you weren't sharing your decision-making with the doctor?
RL: Oh no and it’s a regional town, the choices were, well, him or him! Yes, so they were limited but thank goodness, out there, in the Latrobe Valley, I found someone who knew what he was doing. It doesn't mean he's not compassionate, it means he cares beyond his feelings. Most people dance around it, doctors do. Pharmacists dance around their feelings with this and get involved in all that sort of stuff. It's really important I think not to. Because you buy into the sort of stuff that we like to talk about, then it's a conversation that’s bound to end in tears or medication.
LW: Yes so actually you do need to have that hard conversation, in a very honest way.
RL: Yes in a very honest way.
LW: How do you go about that Ferghal?
FA: Well I firstly discuss the risks as I see them, so a patient who is requesting potential drugs of dependency needs to understand the risks of that request, both in terms of the risks of the drugs themselves but also in terms of the risks of their potential comorbidities like heart disease or lung disease. And then there has to be a discussion about the risks of dependency itself, so I will bring up the risk of dependency. And in my consultations, having identified the risks, then I would agree on a management plan which is all about harm minimisation and again that is informed by SafeScript, thankfully, these days. But harm minimisation does not mean abandoning the patient, minimisation means developing a treatment plan with boundaries that reduces that patient’s risk over time. The third thing is that the harm minimisation plan has to be tailored to the patient because there's no one-size-fits-all. Finally, these discussions are an opportunity of to engage in a certain amount of self-reflection, whereby you know what you have to ask yourself, you know, why are we making the statements that we're making? Why are we making the decisions that we're making? Are we being “judgey? Am I being “judgey”? And Rustie, you said something that triggered them in my mind and I wanted to say something about the “write or fight” response. You know, do we take the time to fight the patient and by that I mean, do we take the time to discuss the patient's views, do the risk assessment to set up the plan or do we simply want to escape and write the prescription?
LW: Yes so again it's about having the hard conversations and being courageous enough to have the hard conversation because it won't be comfortable for either party but it's a really important conversation and maybe one that SafeScript can help us have and stimulate us to have.
Patients with chronic pain, like all our patients, deserve quality care delivered with respect and compassion. Sometimes our own subconscious attitudes or those of the patient's themselves act as a barrier to good communication. Today, we have recommended framing the consultation in terms of benefits and harms, as a useful technique to support good care for your patients. This also means using non-stigmatising language and taking advantage of the various supports available to both patients and their health professional. More information and resources to support your management of chronic pain can be found in the SafeScript online training modules and your local PHN SafeScript health pathways. The SafeScript GP Clinical Advisory Service is a fantastic peer-to-peer advice service to GPs managing patients with complex pain, addiction or mental health disorders and they can be contacted on 1800 812 804. For more information, go to the Victorian Health website www.health.vic.gov.au/safescript. Thank you for listening today and thank you to our guests Rustie Lassam, Ferghal Armstrong and Jarrod McMaugh. This is the last podcast in this series. If you have missed any of the others, you can find them at the SafeScript website.
Language is important and so is framing. As health professionals, we can make a big difference to the experience and clinical outcomes of our patients when we incorporate a benefit-risk approach to our management of chronic pain. Have a good day.
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