Realistic Medicine; What?Why?How?

In this episode, Suzie shares how her experience as an Intensive care and Anaesthetic Consultant formed her interest in Realistic Medicine and led her to New Zealand where she experienced a different model of care, with shared decision making at it's heart. Susie has returned to NHS Lanarkshire and shares her story of setting up and evolving a Shared decision making clinic for surgical patients. We discuss 'setting up on a shoe string, getting funding, measuring success and more. If you would like to see Suzie's resources and templates, please contact Kate.arrow2@nhs.scot

Show Notes

Kate: Welcome to episode four of our Realistic Medicine podcast. I'm Kate Arrow. I'm an Anaesthetist in NHS Highland and today we've got Doctors Suzanne Farrell, who's an Anaesthetist and Intensive Care Consultant in NHS Lanarkshire. And Suzanne is going to share a little bit about her experience with Realistic Medicine. And we're going to have a bit of a focus on some work she's been doing setting up a shared decision making clinic. So, Suzanne, do you want to tell us a little bit about yourself?

Suzie: Hi, Kate. Thanks for having me. It's an absolute pleasure. Yes. I suppose the first thing I should say is, call me Suzie. Okay. I'm an Anaesthetist in Lanarkshire and also in Intensive Care, and I've been a consultant there for just over ten years. So I guess what's brought me to Realistic Medicine has been a kind of circuitous journey. But if we start off by saying that half of my working week is in high risk anesthetics and the other half is in intensive care, that gives me a kind of dichotomy in my job because I love talking, I'm a gab, I like patients, I love hearing their stories. And as you know, you do the same job. It's really difficult when half the time you're spending your work and caring for patients that are unconscious. So I have this desire to not just deliver high quality anaesthesia, but also to really engage with patients and as much as I can, I guess I started off doing a Monday vascular list. That was difficult because it meant I had to go and see my patients on a Sunday. I thought, that's not good. Like, you know, I don't want to go on Sunday and meet my patients at the last minute. But the kind of process evolved and I started bringing patients up the week before. Then I started involving the surgeon and said to the surgeon, listen, why don't we go and see the patient together? This is high risk stuff. Then I developed an interest in assessing high risk and what high risk actually means. I got funding. I managed to put in a business case and successfully got funding for cardiopulmonary exercise testing, which is one way of stratifying risk. So it kind of grew from there. And I think what I was trying to do was do the consent process better. But despite that, I just still had this sense that it wasn't enough. Although we were telling people what the risks were, it was almost when the decision was made for them. And I kind of got this. There was a few notable cases there's, a few patients that really stick in my mind over the years, but despite the risk assessment, having said, yeah, you know what? Probably good to go ahead, did badly or didn't do as well as I hoped they would. So I had this kind of growing idea that there might be a different way to do this. So literally, about seven years in, no part of a lie, I got this, itch. I had to go somewhere. Now my best friend says I've got itchy feet and my husband says that I've always got a project on the go. So despite having four children, I decided that the next project was going to be I was going to try and find another way of thinking and another way of looking at this particular group of patients who are very, very high risk for surgery. So I came across a job in New Zealand and I applied and I spoke to them and I said, listen, I want to come and work for you, because they were looking for a locum, really. But what I wanted to do was join a clinic that they had already established there and they had this clinic model that they called 'Complex Decision Path'. So I started trying to line up all the docs and negotiate with my workplace to go away for not just the three months sabbatical that you earn after seven years as a consultant, but really to go that far, I wanted to be away for a year. So I had a lot of persuading to do. And NHS Lanarkshire supported me, ultimately, and going away turned out to be on the brink of a pandemic. So in January 2020, I dragged my husband and four children to the other side of the world just for a breath of fresh air and to try and see if there was a different way to do what I was doing. And oh, my goodness, what a great decision. So I participated in the clinic there, which was really different, really labor intensive. Instead of it just being a patient coming to see Anaesthetist face the fase, to discuss risks, they have two consultants. And I think that that's an expensive idea for the NHS. But actually I think it is so valuable, you'll know yourself, Kate, that Anaesthetists, like surgeons, have got different attitudes to risk. And I think the problem with a lot of high risk patients coming to see one anesthetist is that although one anesthetist might have a risk discussion with a patient and think, yes, okay to go ahead, we've discussed it all, we've been through the consent process. The patient comes on the day for someone different. So definitely there's two things I'm really not sure about this. So that creates a problem. Patients then can get cancelled on the day. They're deeply disappointed, the Anaesthetist on the day, feels uncomfortable, but bad for having to cancel the patient. So it has to be a better way to do this. That's why my clinic idea requires actually two consultants. There's one anesthetist and there's one intensive care specialist. So I think that turns it more into a multidisciplinary team instead of it being one Anaesthetist dependent. And it also definitely puts the patient at the heart of the multidisciplinary team. And the patient's family who come along with that is absolutely true. So I've spent the last year setting this up and it's running and now it's been funded. I can't believe it. I mean, honestly, everybody returning at the moment. We're told there's no money for anything and I've managed to present this to our board in September and meet our goal, and it's rewarding and I'm loving it.

Kate: How did you do it when you were still kind of on a shoestring, like when you weren't funded?

Suzie: Yeah, so when I came back from New Zealand,I had 4 hours a week. A job within a job was being advertised to be the realistic medicine deputy. So I applied for that and I got it. So I have used that time, if you like, to set up my clinic to do all the legwork and stuff. However, the people I really have to thank here are my two principal enablers actually set up the clinic. They've given me their time. So I've got one colleague who's about the equivalent amount of experience to me and works in intensive care as well, and one who does just anesthetics. And they have both come a lot. I've basically come back full of enthusiasm with this idea and said, listen, can you come and join me? Can you join me in this? And they've given me their time, really impressive time, whetn they're meant to be non clinical or recovering, in order to deliver this kind of labor intensive consultation. So it's been great. So. Thanks, Graham. Thanks Vanessa. Thanks so much for letting this happen, really. And we've done that for a year unfunded, so I've kind of counted it sort of in with the other stuff that I'm doing. But they have given their time for free. Very grateful.

Kate: Yeah. And so how has it gone down with the, I suppose I've got two questions; how do the patients find it? And how did you show the benefit, when you're so limited on time, in a way to get funding to prove it's worth?

Suzie: Patients love it. So really, when I presented all my data to the board, the two principal threads were when patients come to speak to us in a clinic like this and you really put them at the heart of the decision and allow them to realise that actually sometimes having a big operation isn't the right choice for them. If you allow them to realise that and they effectively opt out of having high risk surgery and choose to spend whatever time they have left. Now, this is hard. These are hard, hard conversations. Like you're asking someone who's got bowel cancer, for example, to consider the option of not having a curative resection. Now that for most people is very difficult to get their head around. And most people, if they have cancer or an aneurysm they want to deal with, actually by the time we tell them what their individualised risk is, they say 'don't fancy that', and we would support that decision. Sometimes equally we support high risk patients who do want to go ahead. So this isn't about, patients sometimes become a bit defensive thinking, oh, but last week the guy came in and said, you're just here to talk me out of this. And I said, Actually, we're not at all, we're here to try and help you and what this might mean. So it's not for me to say what's right for them. In all honesty, if I was over the age of 80 with bowel cancer, I would not be having surgery, right? But I try very hard and I teach everyone not to say, you know, the thing that we've always said to patients if you were my relative, it's a very, very it's a very engaging way to, I suppose, earn trust with a patient, right? But I've schooled myself not to say that now because it's not the right thing. That's my choice, but it might not be their choice. You have to kind of present the information neutrally and involve them and their family and making the right decision for them. So we have great chat. We have what does a good day look like for you? Tell me what you want to be doing for the next few months or years of your life. I love to get patient stories. So, for example, we had one woman with locked in syndrome. On paper, you thought there was no way she should be having surgery, but when you met her, I discovered that actually she managed to do some online gambling and go on holidays and things. So really it's not for you to judge what the patient's quality life should be. And I will support high risk and I'm comfortable with that, having done higher risk for ten years. But equally, I think there are a lot of people that end up in ITU that should have had these discussions. Sorry, I've gone off at a tangent. What was your question?

Kate: No, you had good feedback from that.

Suzie: So basically I knew that having spent the time and the pre assessment department given me the clinic space and all the rest of it, I'd have to justify it not just on the fact I know it's good. So in about me, I got one of our registrars to go. Now, all the patients we've seen, there are a number of shared decision making tools out there. There are kind of patient questionnaires and one of them is called collaborate. The other one is SURE, I like SURE a bit better because it's simple, but we had to wait to get permission to use that. So at the time we used this collaborate questionnaire, which basically asks the person questions like how much time was spent ascertaining what was important to you? Did the health care worker involve you in the decision making? You know, it's a kind of a tool to say not are you happy with your decision, but were are you supported in your decision making? And we all we scored highly. And more instructive probably was the free Text feedback. That was really rewarding was worth hearing. You know, for the first time I felt like someone was listening to me comments like that. The husband of a woman with MS said to me, this has been transformative. Honestly, he was crying in the clinic when we spoke with him and I think he realized that was because he realized how serious this was. And although Graham, my colleague was bit uncomfortable, actually, to me that's a mark of a good quality consultation.  So in a way, there's a dichotomy for me, unrealistic medicine, because I spend half my week working in intensive care. It's the most unrealistic medicine we deliver, like lots of our patients do badly. We are very familiar with that. So I struggle with being an Anaesthetist, not being able to talk and I struggle with being an Intensivist and trying to deliver realistic medicine. It's really hard actually. I think this clinic brings all of those things together for me. It lets me talk to patients, it lets me have anticipatory care discussions with patients and so it's delivering shared decision making and anticipatory care planning at the same time. And I have to thank actually also Kirsty Boyd, who's a reader in Palliative Care Medicine, who early doors gave me a big steer on how to direct, how to structure these conversations and has encouraged me also to video myself, which I'm sorry I haven't done yet, but it's on the list just to make these consultations better. But I'm heartened to know from the feedback that we've got so far that honestly, patients love it and anything else besides that's enough for me.

Kate: Yeah, I think you're right. Like Kirsty Boyd and the other person who I've heard speak around the subject is Kathryn Mannix, I don't know if you've come across her and she's a retired palliative care doctor who's written a book called With the End in Mind. And listen, I don't really yeah, I think what I found because I'm obviously, like kind of earlier in my journey of running a similar kind of clinic as part of my pre op assessment clinic. And so I'm still learning and to hear from them structures on how to have those conversations, because I think a lot of us want to have those kind of conversations. But it takes practice, it's a lot of work to do it well, to allow the time for people to speak, process information, and to do it in a way where you're not talking about risk in a way that it sounds like you're just trying to talk them out of having surgery. But like you said, what I found really helpful is talking about what their goals are, what their motivations are. And we heard in the last episode from Norma about how a good day for her is that she's able to smile at somebody and they smile back and she feels like she's given them a positive experience and they've given that to her. And for you and I, active able people. I might not have really thought about that until she told me. So we don't know what we don't ask, do we?

Suzie: Yeah, absolutely. And I think it's easy for a risk averse Anaesthetist to look at a lot of evidence in paper and some common function tests and some correspondence from specialties and think, oh, this is really high risk. But honestly, we have gone into the clinic, Graham and I have delivered the most, and in advance we've said, right, based on what we see in paper, what do you think? Would we support this patient? And we just as an exercise, we say yes or no. And honest to God, sometimes we come out of there having done a complete about turn. Yeah, because you're very compelled by what the patient says. And sometimes the patient has done a complete about turn by coming and speaking to us. It works both ways. So, genuinely, I'm not doing this to save money and to save critical care spending. I'm doing this because I want to support the patients and make the right decision.

Kate: Yeah. And how do you follow up with them? Because I find a lot of our patients come through as a kind of one stop shop, where because they travel big distances a lot as well, like from the Western Isles. And they might come and they'll see the surgeon, they'll be told their diagnosis, surgery will be discussed, then they come through, they have all these rafts of tests done, and then eventually, after a nurse has spoken to them too, they get to us and they're kind of exhausted. Usually I start out by giving them a cup of tea and a break to kind of think about everything.  But I think it's a lot of information and quite often they come across as being quite shell shocked. So how do you follow that up?

Suzie: How do we complete that? Well, we do two things. So, first of all, we say to the patient, right, you don't have to make a decision today, right? Some of them have made up their minds, but actually, many of them need to think about this more deeply. You don't need to decide today, but we're going to write you a letter of detail on what we've discussed and we'll write it in patient centered language that you can understand. I always insist that they bring a family member with them, but there can be wider family that they want to discuss with. But then they've got something in black and white in case they can't remember what we said in the day. We've written it down and we've written it in language that should be readable. There's only been a couple of times when I've brought patients back to a second appointment and that's because they haven't managed to bring family with them the first time. And I think totally it's a game changer having a family in the room every time. Absolutely. Because quite often the family gets it, but the patient doesn't. Or it's the family that insisted the patient isn't. What happens to this patient isn't just going to affect them, the pieces are going to be picked up by the family. So that's the only time that I've had patients come for a second consultation. So normally we cover it by sending a letter out, then they get some thinking time to reflect and then they go back to the surgeon that's referred them to us. So I'm asking the surgeons to engage with this process, that's a big difference. And I asked them for the BRAN, for the benefits, the risks, the alternatives and if they do nothing. And I asked the patient for the same thing in a homework letter before they come to the clinic and if the BRANs don't match, then it's your questions answered. But even last week, quite a senior surgeon said to me, what's the BRAN? So every time I get a referral for this kind of gets an opportunity to spread the message of realistic medicine more widely. So we don't just want a big wordy referral letter, we want the BRAN.  And then once we've had, once we write down the BRAN, the BRAN from the patient and they can see that, they can see what their mortality and complication likelihood is in black and white, I think it just sinks in a bit better than being in a consultation where you're throwing lots of information. I can't remember what's been said so I do teach back at the end of the clinic. So I say to the patient, what have you heard me say? Here's what I have heard you say and reflect back, what have you heard me say? Quite often they can't compute that it's just too much. Sometimes the family member can do it. I think the letter going back to them is great and it gives them time to think about it, that they come back with a decision and then at an interval to complete the loop properly, I've got an ongoing audit. So we basically phone them up and say, listen, you're going to get a phone call in a few months and we're going to ask you if you think you've made the right decision. So I've got a registrar on that. We've done that in May and we're about to do it again just now. So we do try to follow up at our six month interval. Sometimes some of those patients will have died and you get the relative, you get upset relative, so that in itself is difficult, but that's my process so far. It's evolving. It's hard to decide when the right time is to follow up, but that's basically what I'm doing at the moment, is a letter and a follow up phone call.

Kate: Yeah. And then constantly adapting and improving as you go. Yeah, that sounds amazing. And would you be happy to share some of that paperwork that you use?

Suzie: Yeah. So actually, what I've done already is I've got this funded here. Lanarkshire has got three hospitals and the other two sites that's Monklands and Wishaw are now ready to use my paperwork. And I've also set up the IT referral process to be usable in all these sites. So although they've not managed to get two consultants funded, they are using some of the kind of infrastructure that I've set up because it makes the referral process much, much quicker. You're not waiting for letters to be typed and snail mail. That's useless. So all of that I'm happy to disseminate. And it just means that when people get used to looking at that letter and we have to find the specific bits of information. So if they present to ED, for example, obstructed with a bowel cancer, I'm hoping that in time, instead of maybe taking them for emergency surgery, if they've expressed their wish to have that, then when they come through the front door.

Kate: Yeah, that sounds amazing. I think a lot of what you've talked about, we're doing, but we're doing it in isolation or maybe like, some clinicians are doing it more than others. And what happens with us is that the patients offered the surgery and then they come to see us, and then there's a bit of backtracking. So I feel like we need to be in there having the conversation earlier. Do you ever go to, for example, like, a surgical MDT, where they're making the decisions?

Suzie: They have a vascular MDT, so that is difficult, actually, because quite often the patient the decision has been made and the patient has an expectation. What I'm trying to do is rewind the surgeons and say, listen, if you see a patient in clinic and you get that sense, I don't know if they're fit for this. I don't think this is the right thing for them. But I've got 20 minutes to talk to them about everything I said. Don't tell them they're having surgery. Tell them that it warrants further discussion. Because as soon as you've created an expectation in the patient, they think that that's what they need, even though it's not. So it's about rewinding the process and vascular MDT, for example, where you decide whether patients having chemo surgery or open surgery, that's another can of worms that I've dealt with for the last ten years as well. So I've had kind of good training and trying to meet surgeons halfway, if you know what I mean.

Kate: Yeah, totally. And the surgeons that I work with are really on board with improving the process. They see that there's definitely things that we can be doing differently. It's just when we're in this time of such pressure and everyone sort of working beyond their capacity and without funding, it's great to hear a story of how you've changed things in the same setting. And without waiting for resources, waiting for funding, you're kind of doing it as you go. And I'd hope that we are in the process of doing that too. But it's really inspiring to hear that.

Suzy: Yeah, so it just got start small, keep going, and hopefully the evidence will persuade the people with the money. That good thing.

Kate: Yeah.

Suzie: Special thanks. Also, I think we're probably just about time, aren't we? Jean and Austin, two of my amazing colleagues who basically supported me in going to New Zealand for that huge amount of time. Although they've not been involved with the clinic, they gave me the opportunity to go and learn and do something different. And I'd encourage anyone thinking about a sabbatical, particularly in the current climate. It's not for the faint hearted, especially if you're taking four kids with you, but, my God.

Kate: I know. I think going and working in another health system, although the New Zealand Australia health systems are so similar to ours, there are so many areas where they do things just slightly differently. And it's not the panacea, I don't think, that everyone thinks it is, but they just use the resources differently. And it is so good to step out and get a kind of outside perspective, for sure.

Suzie: I'll just tell you one quick thing to finish. One of the patients we saw in complex decision path in New Zealand is Maori. And so, culturally, you have to introduce yourself with saying what your Wokka is. So what's your canoe? How did you come to be here? What's your mountain and what's your river? So I had to stand up and introduce myself and say, Hi, I'm Suzie. My Wokka was Air New Zealand. My mountain was Ben Lomond and my river is The Clyde. And so they can't contextualize you until you give your background. And then we had prayer and song before the clinic started and it was honestly so joyous. It was so joyous. I was like, wow, we should have more music in the NHS.

Kate: Yeah, absolutely. And more just together time. So what would your song be if you were going to do that in Lanarkshire?

Suzy: Oh, gosh, I haven't thought about that.

Kate: You need to come back to us with that. Yeah, people talk about that. We talk about what matters to you. But there's also a kind of where have you been question? Which I read a book by Oprah, actually, and she talks about that. So those two questions about your history, as well as what happens now for you and what's important, are so important. Yeah, definitely. I'll think what would my song be. That's brilliant. I love that.

What is Realistic Medicine; What?Why?How??

In this series we will share the evidence behind Realistic Medicine, Scotland's approach to a sustainable health and social care system, as well as the stories, experiences and projects of teams and communities across Scotland. We want to share best practice, create an open source resource of experience and ideas to empower everyone to practice Realistic Medicine. If you would like to share your story or get involved, please email us on nhsh.realisticmedicinehighland@nhs.scot