Improving Communication in Cancer Care: The Patient’s Perspective

Interpersonal Communication And Relationship Enhancement (I*CARE)
Achieving Communication Excellence (ACE) Lecture Series
Improving Communication in Cancer Care: The Patient’s Perspective
Dr. Thorne
Date: December 5, 2013
Time: 59:56

Sally Thorne, RN, PhD, FAAN, FCAHS
Editor-in-Chief, Nursing Inquiry
Professor, School of Nursing
Associate Dean, Faculty of Applied Science
University of British Columbia, Vancouver, BC, Canada

Dr. Baile: Good afternoon. Welcome to our ACE lecture Achieving Communication Excellence. I'm Walter Baile Director of the I*Care program here at MD Anderson. And today we're pleased to welcome as our ACE lecturer Dr. Sally Thorne. Dr. Thorne is Professor at the School of Nursing and Associate Dean of the faculty of Applied Science at the University of British Columbia in Canada. She has a distinguished career as an educator and researcher on the psycho social aspects of cancer and chronic illness and on communication challenges in oncology which include shared decision making, how do we discuss clinical trials and how we understand and address serious illness. Dr. Thorne has numerous publications in the area and also on the topic of qualitative research and health research policy. Her work has been continuously funded by entities such as the Canadian Breast Cancer Research Initiative and the Canadian Institute for Health Research. She's received other wide recognition for her work serving as a term, as a board chair for the British Columbia Cancer Foundation and receiving the Pfizer Award from the Canadian Association of Nurses and Oncology for excellence in nursing research. She's also been appointed Editor-in-Chief of the Journal of Nursing Inquiry. The topic of her talk today is Improving Communication in Cancer Care, the Patient's Perspective. Thank you, Sally.

[ Applause ]

Dr. Thorne: Thank you so much Dr. Baile. And it is wonderful to be here and have an opportunity to talk with you. I feel a little bit fraudulent because I come to this place where there's marvelous set of recourses. You've got some amazing people here and some wonderful people, wonderful programs and professional development and in cancer communication. So, it's absolutely wonderful to come and talk among friends about things we're passionate about. And I'm hoping I can bring it just a little bit of a different perspective from the kind of research that I do but I do hope you appreciate the marvelous place that you reside in here and incredible contribution that people like Walter have made to the field of cancer communication. My task today is to reflect on some of the distinct contributions that qualitative research can bring through this complex field and to think about some of the dynamic and individualized nature of cancer care communication and some of which we can uncover through qualitative methods, to talk about some of the patterns in problematic communication that can be helpful to understand if we're trying to resolve this particularly from the patient perspective. And then, to look forward to what does this all mean with regard to what we can actually do make a difference. So, the wider context in which I want to speak is this context of evidence-based practice. I think we're all incredibly aware that we need to be accountable. We need to be thinking about how to ground the choices we make and the places we put our resources and the emphasis we put in the clinical context into that for where there is a solid evidence base. And we recognize that this is tremendously important because it informs that integration of that which science can contribute to that which is relevant to clinical care from all other forms of knowledge and evidence the mandate for evidence informed practice is certainly not going to go away and it is going to continue to be the changing ground against which we have to make decisions as to where we put our resources and what choices we make in the clinical population. But it's useful to recognize the evidence domain almost inevitably reflects knowledge that is pertinent to populations. It's talking about patterns that have been seen in similar patients that have gone before in probabilities that can be worked out, correlations, causal inferences and all of this interpreted in such a way that we can begin to make predictions of to what might happen with the patient who's in front of us today. But it is only one species of knowledge form. There's a whole other knowledge entity that has to do with the dynamics of people. Those things like human uniqueness, the relevant context that is pertinent to this individual as they are in front of you today, the values and beliefs that they bring in to the encounter, the values and beliefs of the larger world in which they experience their cancer. And then, the individual manifestations of anything that you can have discovered at the population level and these two different kinds of knowledge always have to come together in informing our clinical encounter. The thing that we might refer to as clinical knowledge, this clinical epistemology always resides somewhere in the middle ground between these two different kinds of knowledge. So, we're not simply looking at facts and we're not simply dealing with subjectivities but we're integrating them and dealing with them in some kind of dialectic relationship, so that we think about not only patterns but also the possible infinite variation on those patterns that may pertain to individual situations. And this is a little of the structure of how clinical knowledge works. And I find this useful just to reflect on this to think about what the different contribution is of the various kinds of knowledge generation that we can do in relation to something as complex as cancer communication. So, this thing that we might call clinical practice competence where it pertains to communication skills is always somewhere in the middle ground between knowledge of the general and then the knowledge of the particular, the particular person that you have in front of you and the particular context of their situation. Now, communication is one of the most unbelievably difficult and complex things to study. We know that in every single document that has been informed by patients, every single national policy forum in your country and mine, communication always rises very high on the list as a high priority patient concern. We have a huge amount of evidence of its impact. We know that it has tremendous impacts on patients, on their distress, on their seeking out of additional supports, on their confidence and what's going on with them, on their decision making. We know that it has impact on clinicians in the sense of burn out and moral distress. And we know it has impact on systems in terms of cost. The worse we communicate, the more strain there is on systems and all of the people in this. And there's been a tremendous amount of intention and study to communication. People have certainly recognized that this persistent little thing just sneaks in to all of these forum documents but even though we have been studying and focusing on it, the problems that exist in communication continue to persist. So, this is one of the interesting aspects about communication. And the studying of communication is unbelievably complex. It is one of those things that operates in the peculiar ways it does, such as to make it very, very difficult to grapple with using the kinds of techniques that we would use for so many other kinds of health and illness phenomena. And I'll just comment on why--a little bit about why that is. People are--the main reason is that people aren't robots and that people are very, very differently constructed and engaged in the world in a very different way than anything technical, anything that can be narrowed down to its core principles taken out of context and measured. And you know this. Everybody knows this themselves experientially. We all know that to be true in our own lives. Simple example, we can study till we're blue in the face, the physiology and tonality in words of communication. There a lot of things we can do to study it. We can measure it. We can count it. We can record it. We can print some subjective evaluations of it. There a lot--a lot of things we can do to render it into numeric form, but many of them miss the really important and powerful meaning that communication has. Probably many of you have had encounters just today where you said words like good morning to somebody. And if it happened to be to your partner, spouse or something like that, you might have had a response like, why are you mad at me? You came into work today and said good morning, and somebody say, "Oh, you're being overly cheerful." People hear something as simple as good morning with a whole lot of emotional load and meaning. And we all know this to be true. We experience it. When we hear someone speaking we read a lot into it. We sometimes feel very hard done by when somebody interprets our simple language in that way, but we know something is absolutely straight forward as good morning, can be interpreted as a highly positive or highly negative and anything in between. And this is really why communication becomes so terribly difficult to standardize or to measure, or to evaluate in any way, because it has this particular quality. Also, the good morning, the exact kind of tone of good morning that you use today with your work mate might be heard differently tomorrow, so its dynamic and fluid over time. These reflections—these

I might hear a particular communication very differently if I'm in a moment of strength and confidence than if I happen to be feeling vulnerable or frightened or in a hurry. It's very humanly experienced highly nuanced and very, very dynamic changing over time. So, while we can--we can measure some aspects of it, we can record it and document and we think we think some things about it. It will always have this kind of slippery amorphous quality that makes it not at all amenable to the usual kinds of studies of even other kinds of psychosocial phenomena. The miracle is that communication works. It is so unbelievably complex that you could say it should never be humanly possible to communicate a message in a powerful way. And I give this just as an example and there are many of them that you will be aware of, but there are certain kinds of communications that have this universal appeal, despite all of this nuanced individuality, we know that there are certain kinds of communications that can strike a strike a population, that can last over time, that can have some kind of powerful meaning. So, it has this incredible fluidity of having some real nature, as well as, this highly subjective and movable nature. And then, of course we're talking about not just communicating but we're talking about communication in the particularity of illness, a very complex kind of illness experience when someone is facing cancer. And, you know, as you all know whether you happen to have had cancer yourself or a close family member or not, it becomes a highly vulnerable sort of context in which all rules may be off with regard to how you may have interpreted a message that you would have had the day before. So, this leads us to a really difficult challenge in thinking about what it is we know through conventional knowledge sources. And cancer communication has been studied tremendously over a long period of time. People have been trying to figure out what it is that you can actually measure in communication, what kinds of patterns would be recognizable in populations. They have tried to test various interventions and figure out what outcomes ought to be measured. By a landslide the thing that has been measured most is communication training to see if it has had any impact, and there's been several Cochrane reviews--systematic reviews of this, but well over 4,000 studies of the outcome of various kinds of communication training, very few of them randomized controlled trials. But just to give you an example about investment in trying to study cancer communication training, only under 20 of those actually are randomized controlled trials that would meet the Cochrane criteria and from all of that incredible investment and research, the most recent Cochrane review that was finished in February of this year across various kinds of training doing it in a randomized controlled mechanism found that after training people are more likely to use open-ended questions and they're more likely to show empathy. Those two things were statistically significant. There was no difference between doctors and nurses, and no significant change in any other skills, only those two skills. However, all of that investment and research has been able to show no difference in health care professional burnout, or patient satisfaction, or patient perception of health care professional communication skills and those are really what it's all about. So, it's fascinating how much effort has been put to evaluate and how very, very difficult it is to grab on to what might be a relevant outcome. And this is why it becomes useful to think about what other ways are there of studying a phenomenon, so we can begin to understand from multiple sources. The kind of work that I've been doing over the past couple of decades is qualitatively developed and it's not intended to be a competing form of evidence, certainly a qualitative study doesn't sit in juxtaposition to a randomized controlled trial and pretend to be close cousins. It's a very different kind of it of an inquiry but it has--it has the capacity to fill in the gaps and to be the glue between the kinds of findings that one can come up with through other means. In other words instead of competing with those trials, what it can try and do is help us understand why it is that we can't measure those changes in patient satisfaction, why it is that those things we're measuring are only capturing a certain part, and the kind of contribution that qualitative research can make is to help us think through things like what's wrong with our assumptions about what we're measuring or what we're doing, what other layers of complexity might enrich our understanding toward understanding practice knowledge and being able to improve communication. So, qualitative methods have the luxury of not pulling a piece of a human experience out of its context and rendering it into numerical form, but actually going back in and trying to understand what that might mean within its richer, deeper context and then looking at multiples of that over time to be able to see if there's insight and patterns. So, it's a different way of thinking about things. And the context of the program that I've been involved in has been an interdisciplinary team with some fabulous colleagues including radiation oncology, epidemiology, medicine and nursing. And that we have had on our team as well a wonderful professional advisory group with health professionals of all stripes who are fascinated by these questions and also a patient advisory group of some really committed patient advocates and family advocates that have tried to keep us on track over time. So, we've had this wonderful group of people that's been working together, some of them for 15 years. And the program of research just to very quickly introduce you to it, the most recent period of the last six or seven years, we've been studying cancer patient perspectives, they're changing needs and preferences for communication over the course of a trajectory. In previous studies we've captured them in, you know, single interviews or in focus groups and we felt that there was so much explained by changes over time that we needed to study that. Patients will describe themselves a year after being diagnosed with cancer as being a very different person than they were the day that they first heard that news. They've evolved through something. So, we felt that we wanted to understand communication not just static as over time. And we picked up patients very shortly after diagnosis and then tried to follow them through with bimonthly interviews over time, ideally for up to five years of course not of all them stayed in the study for various reasons over time but where we could, we continued to follow them. If they were finished with their cancer and not really wanting to talk about it, they might not have much new to report or be interested in continuing and certainly some of them progress into serious illness and died. But in that initial group of 60, we actually did not over the first couple of years have too many of them fortunately, that were having advanced cancer. So, we then expanded the study to recruit people who began with us when they already had been diagnosed with advanced cancer. And then we also added a group of people who were theoretically selected for various kinds of communication variations that had arisen in the first round as being relevant and we wanted to be able to theoretically understand it a little bit differently. The methods we're using we're calling interpretive description which is really a fancy way of saying, it's a name attached to a sensibly logical approach that draws on all of the marvelous and wonderful technique from a lot of incommensurate qualitative methods and uses a clinical disciplines applied logic to make design decisions to take an idea forward. So, just for example for those of you who are familiar with qualitative method, you'd know the concept of theoretical saturation. The idea you've seen enough people that you are sure that there's no more patterns. While as a nurse educator I'd say I wouldn't want to train up a baby nurse to say if you've seen a hundred people with a hip replacement you've seen them all. You know, the thing that is going--the mind set that is going to make you a good clinician is to always assume that the patient you see today maybe a little bit different than anyone you've ever seen and your job is to be attending to that possibility. So, we've tried to use clinical logic and the applied logic of health professional reasoning to be the design decision through a rigorous approach to method, that can really be mindful of who the intended audience is. We don't do this research for social science theorizing purposes. We do it to try and enlighten clinical reasoning. And using these methods we've had just wonderful conversations with many people over time. We've got well over 500 interviews in the can and, you know, thousands and thousands of pages of transcripts and it creates a wonderful database against which we can reenter with different variations and themes on the question. But the wonderful message from this is that from a patient perspective, this is all patient reports, we're never making a judgment as to whether these patients when they talk about what happened in their cancer communication we're not making a judgment to say that is exactly what happened or that's necessarily a true account. We're saying it's a patient perspective. So, from a patient perspective, the good news is that so much of what we teach in cancer communication, so much of what you teach in you I*Care program is validated by patients. So, their perspective they don't necessarily know the theory that you're learning but from their perspective they describe as helpful, as helpful to them those kinds of communications that we're teaching.

For the most part there's a tremendously strong match between the clinical wisdom that has created those kinds of approaches and patient experience. And they very much recognize that helpful communication, what they call helpful is, is that act of beneficence in clinical practice, the will to do good. And that when clinicians are attempting to do good, they engage in ways that are helpful communication. We use the language of helpful and unhelpful as a somewhat neutral way of describing instead of saying, who's a good communicator and a poor communicator but helpful really causes a patient to reflect on what's helpful to them. And the mechanism that we hear from them, they tell us in two different ways. One is stories. They'll say, I'll tell you about the day my doctor did this. So they tell us stories or they'll tell principles. All doctors should do this, all nurses should do this. And if they start with principles, we dig down to harvest some stories to help illustrate and understand that fully. And if they start with stories, we try and dig down into principles. And so, we try and align a data set that will allow us to have both anecdotes and the best representation we can get of the meaning from the patient perspective. We also through this, learned quite a lot about what the dynamics are of unhelpful communication. And while most patients have experienced some aspects of good communication and are very happy to describe it, unfortunately, it seems the case and not just with our research but with others who study these things that most patients at some point still do encounter what they consider as unhelpful and/or problematic communication. And that at least somewhere in a cancer journey in which you're engaged with many people, many people will hit up against this. So we don't think that those who come in to our studies are necessarily, the most angry ones or the most happy ones, they seem to be pretty representative of populations. And what I'd like to report from this body of research today is three--it's kind of separate things. One is a few ideas about the sort of thematic findings that we've been able to have, some of the interesting ideas that have bubbled up form these stories over time and we've been able to re-enter the data set and look at them systematically. The other is some issues of the trajectory, you know, the important issues and dynamics of communication as they occur at different points in a cancer journey. And the third is a little bit of breaking down the idea of what constitutes poor communication and a bit of a typology of how we think about that. Because we think about that quite differently than we did when we began this study. So just a snippet of these kinds of things that we found so fascinating, a thematic finding across cancer patients is that all cancer patients want to be known in the care. That thing, thing about human connection, they--and they often use that language, "They know me at the cancer clinic, my doctor knows me." But what they mean by being known is very different. And in some contexts, for example, we've heard some saying, "He's not at all business like and professional. He's sort of folksy." That is the best way of describing how he knows me. Or she's highly professional. She respects the fact that I'm a business person, I'm used to dealing with things in a particular way and so when we meet, you know, we behave in a very professional fashion and we don't get into emotions, that shows that she knows me. So, there can be opposite ends of everything, using humor, not using humor. Sitting down and being caring and empathetic or holding off on the visible expressions of any emotion or distress so that will help the patient stay calm. And it's fascinating because we hear opposite examples. There's a trajectory of examples but all of which are for patients, clear demonstrations that in that context, that individual knows them. Another whole theme that we've found fascinating is the incredible power that numerical information has on hope. I don't have to tell anybody here how terribly important hope is to all cancer patients across the whole trajectory. Whatever it is you're hoping for, it doesn't ever go away. And numbers, the numeric information, statistical information have a particularly potent and powerful effect on that. You could have an hour conversation with somebody but the one piece that sticks in your mind and haunts you when you wake up in the middle of the night is the 79 percent of something happening. So that peace of numerical information has huge power and can trump other kinds of information with regard to its relevance and its importance. It can also be incredibly confusing information. For example, far more people hear the answer that something has a 50 percent chance. We'll, you know, if you know anything about statistics and numbers, there are very few things in the world in which anything lands on 50. You know, it's a pretty rare number to actually come up with numerically but it's conferred numerically to refer to the idea that we don't which way it's going to go. It's a way of saying uncertainty with far more certainty than it deserves and it creates those kinds of confusion. So, people do a lot of playing the odds and try to manipulate the odds. And if I do this or I do this, this doctor's given me a 22 percent chance. And this one's given me 29 percent, I'm going to this doctor. So, there's quite a lot of bargaining and coping around numbers. The third one that is I think so interesting is patient's perspective on how clinicians manage time because they very much get that every clinician is hugely busy. There's no question that they all recognize that all of us in a delivery system are pressed for time and they're aware of that and they're understanding of it, and sensitive to it. They get that it must be a problem when everybody would like to have more time. But they describe the behaviors of clinicians who are able to use time far more productively than others. Clinicians who can say, I've just got three minutes with but it may give them the impression that it's really your three minutes. And for those three minutes, I am here for you and I'm attending to you. And one example of that sort of is just so classic for me is a patient that once said, "He's the kind of doctor who's with you for three minutes and it feels like 15 minutes where other doctors are with you for 15 minutes and it feels like three," just a wonderful way of encapturing it. So we've been able to track various ways in which patients talk about that issue of use of time. And, you know, how it's done well and how it's done badly. We've also been able to track the trajectory findings. Some of the things that are particularly helpful and not helpful around a period of time like diagnostic communication, the diagnosis window is certainly, for some people it's a flash of a moment. And for other people, it's a gradual awakening of an understanding of something. But it's one of those beginning points at which patients will never forget the sense in the room or what's going on. It's one of those, those classic moments in the course of a life that when the news about cancer is told that becomes extremely important. And so what kinds of things people remember. We've heard some very bad stories about people's diagnosis information and some very good stories. We've certainly also heard stories that the patient was terribly upset and probably angry and everybody there might have been very upset by that communication. But we've been able to follow them and have them reflect back later on. And very often, even in the worst of the upset, they can say, they must--I'm sure they'd never want to see me again. But I do remember that kindness. I remember the eye contact. I remember the hand on my arm. The good news is that even when it is a bad situation, probably for all concerned, people can remember the good parts of it. One of the great things about doing a longitudinal study is that we not only were able to talk to people around the time of diagnosis but we were also able--when we follow them forward, take them at the one year point. And at one year, we asked everybody to reflect back. Now, that it's been a year. Can you reflect back on what that experience was like for you? Why was it like that? When you think of it now, how much did you contribute to that difficulty? What else was going on? And if you had a difficult time, how did you resolve it? Certainly, very few people stayed in the same level of anger and upset that they were at the beginning and particularly where they thought they had some problematic communication, they either found somebody else to be caring for them or they found a way to resolve it. And we hear some wonderful creative stories about people learning soccer statistics so that they could bring them up in a conversation with the doctor and get into a conversation, bringing some kind of humor, cartoon or a joke to shift the dynamic. Starting treatment was very interesting form the perspective of all of those dynamics of communicating options and of treatment, turned out to be a very, very interesting one from the perspective of how rarely patients were prepared for the idea that treatment would end. I don't know if it happens much differently here in this context. But for many of them, even if someone had hinted that it might me their last meeting, their last consultation or their last treatment. For many of them, it was tremendously abrupt. And in contrast to the very skilled relationship building they had experienced from many health care professionals at the beginning and they often felt dumped out pretty fast.

There was no resolution to this. And in our context, another aspect that they raised that I thought was really quite useful as an understanding, was that they so often when they first encountered the cancer system, somewhere along that line, they've picked up the message that thank heaven you're here now. We know what we're doing. This is the best place to get this care. The underlying message, the implicit or explicit message was, that those people in primary care only have kind of moderate knowledge. It would have been good if you'd have been picked up earlier. But know you're in the right place. So fast forward, six months or a year or, however long, the patient still got that memory of having the disrespect of the primary care system when they've entered oncology. And so when we say, actually it's your last visit, you're back on your primary care practitioner's case load. No wonder people are feeling abandoned by the relationships, the people that they've depended on and come to care about, but also abandoned by a system. So the very classic experience of expecting to feel normal when your treatment ends and finding in fact that it's very emotionally devastating is partly related to the ideas of some communication issues that we do have potentially have control over. And I think in transitioning to advance diseases, one that many people have studied and recognized. I think that's well understood to be an important part. But in each stage of the trajectory, from a patient perspective, slightly different takes on these insights that we've been studying can emerge. So from all of this we've been able to think about, what is it that good communication looks like from a patient perspective. Originally, we thought we'd come up with standards and guidelines but we quickly saw the error of our ways. We recognize that it is valuable, even though we won't come up with one package deal as this is exactly what you ought to do in all circumstances, there are definitely some common patterns that are useful in developing insights and that these can help us understand how to modify those over time but also it's extremely useful to understand poor communication. While we sometimes have focused on good communication, you know, trying to be positive and optimistic and helping people find it, I've come to believe that actually some careful attention to what constitutes poor communication and what we can do about it is also relevant. And certainly it's relevant from a patient perspective. Supporting the good is only part of the constellation and attending to and understanding the poor is another piece of it. So a thing that we're calling the typology of communication errors is really trying to articulate from a patient perspective what these differences look like. The first kind of communication error or story of poor communication that patients tell us, we can describe as occasional misses. And these would be good people who care about communication who are trying to do their best and they've had a bad hair day or they misjudged or they just didn't get it quite right, misinterpretation or a misjudging level of anxiety, something like that. Every single clinician has occasional misses even the best, even the ones who care the most, even the ones with the most skilled communication can get it slightly wrong sometimes. And from a patient point of view, there's not much you can do other then gradually mature and continue your professional development. All of those things that we do are relevant to reducing the frequency of those occasional misses. And that would be the natural maturing of the communication skillfulness of a clinician over time, to have fewer occasional misses. Some things that we can do are to attend to fitness of practice. You know, if you're not dealing with your own mental health and whatever else is going on in your life, then you may well be more likely to make those mistakes. We can articulate professional standards. We can encourage reflective practice and mentorship. And we can also use a pay attention. This is where many of these standardized guidelines can be tremendously helpful. Not to say that they're rule structures but as general guidelines to help us reduce the chance of those occasional misses. Then there's a whole other set of communication problems that are what we might call system misjudgments. These are the kinds of things that are kind of shared faulty assumptions, conflicting agendas, competing accountabilities and gaps,because we perhaps haven't added enough of the patient reported outcomes into our analysis of literature. And I'll give you couple of examples. One is informed consent, patients and certainly this is perhaps even more so when we look at a culturally diverse population, patients have tremendous problems with the dynamics of an informed consent conversation. And they very often begin to wonder whose needs are being met by barraging them with all of the terrible things that could go wrong. And their perception sometimes is do I really need this information, me, clinically, in this moment, with what I'm feeling or is this doctor giving me this information or this nurse giving me this information because the risk management people are after them? Is there some law that says that they have to do this? Are they covering their backs? We hear that kind of language. So from a patient perspective, the informed consent which is meant of course to be good for our patients can be read as something that has a different intent. Conversations around clinical trials are another really complex and questionable aspect. We've certainly found that the tension between is that clinician or the scientist talking and--whose needs are being met in this conversation as well. For example, we've heard from patients that the language of the communication can shift when it starts to shift into the conversation about there's a clinical trial you might join. And we started to hear in the transcripts, patients started to say, "Well my doctor said there was a fortunate thing that was going on or I have happy news for you. Good news is that you qualify for this clinical trial. And that reflection that we started to hear and see across patients was that language would shift because there's not much happy and fortunate they have heard to this point in getting diagnosed with cancer. They're dealing with some negative things and suddenly the shift in language starts to create a bit of a confusion that can then create that. I'm not sure. I know about clinical. I have a sense that they're trying to give the best treatment to me. But this is shifting the dynamic. And this is slightly different person talking or different side of them talking. And I'm not sure about this science whose needs are being met. Do they get promoted more? Do they get some money? Is there some benefit to them if I join the trial? And is this the clinician saying, this is the best thing for you? Or am I serving the needs of some future patients. So that's a complex area. A third one is shared decision making. In the well-intended clinicians who want very much to engage patients in decision making about treatment. And as you all know there's a tremendous pressure to ensure our shared decision making model. To some extent, this too has been caught in a risk management agenda. That if patients are involved in the decision making and I've attended shared decision making conferences in which it's very, very clear that the whole ethos around how or not to communicate has started to shift. From a patient perspective, shared decision making is hugely complex. Because patients for the most part, while they certainly want to be involved in the conversation, for the most part, do not have access in their personal and social world to people who have this particular kind of expertise. And we've heard many, many stories of how devastating it can be for people who have asked the question that patients learned that they're not supposed to ask. What would you do? There's lots of literature for patients, about how to side step and avoid that conversation. And we hear it from the patient perspective, very devastating when you only know one person in your whole life who might have this specialized expertise and they respond with saying, "Well I never answer that for patients," or "I believe that would be sort of paternal to answer that question and so I'm just going to let you make that decision." So this is a very interesting aspect of it. And these are the kinds of things that qualitative research can pull out a little bit differently to help us problematized some of the things that we systematically assume in the cancer care system. And then I mentioned that transition to survivorship which is hugely complex. And I think sometimes we don't really think at the beginning of a cancer experience. We're not communicating as if they're going to be somebody leaving that treatment context at some time. And we need to be able to think about these issues of trajectory. So the solutions to these are really--it's useful to do an analysis of practice patterns. It's very useful to continue these strategic communications research that is going to help us get at some of the complexities of the things that we think we understand and help us specifically answer the question. If we think this is a good general practice and a general pattern, can we work out where it's going to go wrong? Which of the patients for whom it's not going to work and why? And so this is the kind of question that we continue--can continue to throwback qualitatively to really augment our thinking. The third problematic form of communication is what we're calling repeat offenders. And patients do over time because they talk to one another. They develop an understanding of systems. They begin to understand that there's certain individuals who seem to have a communication disability and cannot behave in such a way as they use language appropriately, they have a demeanor which is problematic, disrespectful, discounting, there's issues of voice tone and attitude. And it may only be a small number in the cancer care session but they may actually touch quite a number of patients over time. And patients become very confused about why such people are allowed to exist and they have lots and lots of theories.

It's fascinating how they will say, well perhaps this person just had to create kind of a steel way of behaving because they have to deal with cancer patients, they understand how hard it is, how hard it must be to be oncologist but they also recognize that this isn't the case for all oncologist. And so their theories are very interesting, they wonder if it's a skills deficit, they often believe that it's disinterest in communication. Just a complete lack of awareness or perhaps a disability that this maybe somebody who cannot develop that art form of connecting with a human being, it's quite interesting because they try and figure out a way to make sense of it instead of just carrying it around as a hurt and pain and often trying to be as charitable as they can to understand that particular problem. But because this--because all system seem to have them, this has caused us from the patient perspective to start to think that the way in which we've been trying to deal with communication issues, communication problems may be just a little bit off. The standard--if you read in the literature the standard endpoint to any study is communication training, that's the outcome, that's the thing we recommend, that is the belief. And as you can see communication training would be great at the early stage for clinicians, everybody ought to have it but the evidence will never probably support that it makes much of a difference because communication is such a complex incremental thing that you get better and better over the years and each new insight if you're one of those people that's continuing to develop your thinking. But what we've been thinking is that what we ought to be advocating for is a healthy communication environment for patients rather than taking it individual, an individual responsibility for our own communication skills. But just as we do with patient safety we consider that a shared concern in our systems. If there was a pot hole in the corridor that people were falling into everybody no matter what their role would understand that they had an obligation to report it, yet communication and problematic communication becomes invisible, we often don't know what to do with it. And the directions that I think we need to go in with this kind of research are figuring out how to get beyond enabling the system flaws. We set up systems that allow people to continue to be lousy communicators and it may be a very small number but we continue to allow this rather than figuring out how to create a system that actually advocates for our patients. And some of the things that become sort of obvious then are--what if we work in teams, teams almost inevitably, healthy functioning teams, interdisciplinary teams make a tremendous difference, we can buffer. If there's somebody who is awkward and uncomfortable and just cannot comfortably communicate for example that person perhaps shouldn't have to do bad news conversations alone. And in fact we might even say that individual should never have a difficult conversation alone. We can think about ways of connecting patients, and navigating for patients, and ensuring that they always have this primary point of ongoing contact and that communication issues are part of what they are allowed to contact us for, it's not simply pain and symptom management but the getting along. I think we also have to stop protecting individuals who may be contributing, and frankly it's usually the case that most members of the healthcare team know where the source of the difficulty is. They may have had to deal with it themselves and being recipients of it, but we tend to have systems that protect. It's very rare to have senior administration that basically has a zero tolerance against verbal violence. And we need to be thinking about it that way. But we also need to be educating and managing. We don't give up on our patients even though they're difficult to communicate with, they may be very unpleasant to engage with, we know how to not give up on our patients, and we need to think about ways of not giving up on our colleagues as well. So, I think the implications for ongoing study of this and knowledge translation taking this kind of knowledge into practice are again threefold. Thinking about these three different kinds of communication problems, we can continue to work on the idea of occasional misses, we need to train up clinicians of all stripes to really have an intellectual curiosity about communication to find it interesting, to find it something that they can do. And it--the good news from patients another piece of the wonderful good news from patients is that we don't all have to be funny, articulate, charismatic, comfortable communicators. They are very, very capable of recognizing that their clinician is shy, or awkward, or has difficulty finding the words, but they are very forgiving of that, if there's an authentic interest in trying to meet their needs and we've heard this again and again. So that whoever we are it's not simply those among us that speak publicly or are comfortable verbally that need to be engaged in effective communication, we're all in this together, and we can all work toward reducing these occasional misses that occur. I think that in order to think about these systemic problems, these misunderstandings that we can have collectively that can be sort of seen slightly different or we can shed light on them or understand them in a more complex way by doing this kind of qualitative patient perspective oriented research and this I think really helps us have the tools for clinical practice to understand the nature of patterns but also always be able to understand the nature of where those patterns may not work, what are the situations that we should be looking for that cause us to need to go in a different direction. And finally to be looking for these system level solutions, how do we organize our care systems, values, and the structures, and the functions of our care systems to try and make sure that we have a way of buffering patients against persistent communication problems and really supporting the transition of people who have such problems perhaps a way from direct patient care if they ought not to be having another conversation with another human being or building a system around them. I've often thought if you had a, you know, you had a great technical clinician who lost an arm or something like that we'd always--we'd rally around them and we'd be able to create a system thinking about how to make sure patients weren't harmed, but we haven't thought about communication as if people could have a communication disability, I think that might be a model that we could move into. Then finally, I want to point out that I think this is going to get more and more complicated over time, it's already complicated enough but we are moving into a world of personalized medicine, we're moving into a world in which the incredible epigenetic evolution of care delivery and understanding cancer pathology is going to shift in incredibly important ways. And the two most important for this conversation are that rather than moving towards standardization of care, we are definitely moving toward heterogeneity of care so the two people who looked alike 10 years ago might have been dealt with in a similar pathway and a similar clinic may be quite differently dealt with now. And it is going to be quite a revolution for many clinicians who been thinking that we've been--that the goal is really to master the art of creating the standard clinical pathways. And in this context we also have--are going to have increasing levels of uncertainly that we're going to have to deal with, there are more and more ways of managing cancer, understanding cancer, grouping cancer approaches that will head us into pathways in which there's far, far less knowledge and there will be less knowledge of what's going to happen a year from now, five years from now, 10 years from now. It's an unchartered territory and it's creating lot of difficulty. So, this idea of being able to figure out how to communicate uncertainty is going to be an increasing challenge for people across the spectrum, its certainly being talked about in the oncology community. So, I think in cancer care systems we are going to need to think about this. So, this is going to cause us to think about how do we front load conversations with patients about managing uncertainty, how do we let them know that the information isn't going to be as certain as it was. In the same context of course while we're increasingly saying, the message is less certain than it would have been. We might have given you something that sounded a little bit more clear a year ago, now we're giving you something that is a little bit more unclear but also patients of course have so much more access to information. And even if they swear that they're never go on the internet you know that their grandchildren and the next door neighbor are. And the world of knowledge that people will have, the competing knowledge claims. So, communication is going to have to deal with these questions of variation. You can no longer say, "My aunt had breast cancer, I've got breast cancer, I now know what that path is like," breast cancers may be radically different. And we're living in this world of uncertainty and we're living in this world of complex information. And if we don't get ahead of it and help patients from day one, understand that this is the nature of the world that they're in then we'll be letting them down from a communication point of view. So, I just really appreciate the opportunity to very quickly give you some of the--a taste of some of the insights that we've been able to come to generate through this kind of approach and to reflect on some of the challenges I think that are there for us in trying to figure out how to sort out this communication problem. And if there are any moments left I'd love to entertain some questions. Thank you so much.

[ Applause ]

» So, any questions? Dr. Epner ? So, we have a microphone coming your way.

» Thank you Cathy. Is this on?

» Yes sir.

» OK, so that was really, really awesome and I just want to kind of find out more about something. So, you talked about how when we see suboptimal or kind of misses in communication, doyou propose a plan of doing something about that? And I think one of them as I understood, it was the sort of chaperone for lack of a better word, people who have clinicians who have displayed suboptimal skills, but I'm having trouble sort of visualizing how that would actually play out in a clinical environment and how you make that reality?

» Yeah. What I'm--we're using the language of occasional misses, we're talking about great people who value communication and try and do it well and still fall off everyone once in a while and we all know, we all do this in our communications at home, at school, at play, you know, no matter how earnest we are about it sometimes it doesn't quite have the effect. And so, with occasional misses since that's most of what most clinicians are dealing with. They're not really being awful out there. They're just sometimes getting it a little bit wrong. Mentorship and a culture of mentorship, a culture of reflective deconstruction of things that didn't go well and supporting one another is tremendously useful. However, we all know that if you sort of take my premise that there are persistent offenders they tend not to be in that conversation and if they're in the room they're shut off. So, that mentorship and training approach actually tends not to hit the places of those sources of a particular kind of poor communication that persists. That group I think requires a different kind of strategy and it may be a strategy that has some support from senior administration. So, when I use expressions like verbal violence or, you know, no tolerance. I have a fantasy, in the perfect situation you would have it like in a hockey rink where the blue light goes off, beep, beep, beep somebody is just said, "There's nothing more we can do for you." And we catch those and deal with them. But at this point in most systems they tend to persist behind close doors, however everybody knows about them. Those can't be managed for the most part by mentorship; they have to be dealt with in some other way. And I think that we increase our likelihood of being able to manage them in teams. If we're working in teams in which somebody can say, "Listen, you're a lovely person but you're a little bit gruff and when you talk to people that way, how about if I come with you?" So, you can actually in a friendly way if it all possible create other ways of dealing with things. And thanks for the question.

» OK.

» Other questions? Yes? So—

» What do you recommend to improve the situation when the patient is moving off of therapy and going into some other environment? In some cases there's survivorship programs and other cases as you mentioned it's going back to, you know, their home base of physician, what remedies or suggestions do you have to ease that separation?

» Great question. If I were a king of the world and involved in all of this, from what I've--from what I know from the patient perspective I would actually start that conversation the day you begin, it's recognizing that this is a time limited relationship, it'll be a special period of time in your life which is incredibly difficult but also you'll feel safe and secure while you're here in the cancer care system among the experts and there will come a time when you progress out of that. So, that if you start that conversation at the beginning that makes a difference. We know how to build relationships and therapeutically, and in cancer it turns out from all I understand people are extremely skilled at that in building those intimacies of human connection and relational practice really quite quickly, but we don't then do a good enough job about anticipating and saying, "You're now toward the half way point or you're heading toward." This is what it looks like. In our clinic we tend to--the day will come when you're told this and this is what will happen. So, I do think that anticipation. I also think that it is very true that patients will form dependent relationships, they will feel that those who are with them care about them that that is the downside of being known and then human connection is that we can't pretend that we haven't created it. Once we've created it we have to help people understand that it has to be time limited. Now, I actually believe that most patients are quite reasonable when they get distressed, it's because it's happening at a gut level and they often don't even understand what's going on. So, we can help them understand that to say, "You may have a letdown, you may have expected to feel normal and happy when treatment is over but it won't quite. And here is what other people have experienced." So, I do think that there are those anticipatory conversations. When we hand them off we also--it would be ideal, it we could hand them off with the sense that this is not a permanent immediate cut off, we'll phone you in two weeks or you can come in for one last visit, something like that. So, those are just some thoughts.

» So, perhaps we need kind of a campaign such as "Making Poor Communication History"

[ Laughter ]

» A parallel campaign, you know that our logo is "Making Cancer History," but I think it was very interesting kind of in framing poor communication as a patient risk because if you're not talking about, you know, the benefits or lack of benefit of a chemotherapy fifth or sixth line, you know, you're putting the patient at risk of getting a unnecessary treatment and having adverse side effects. So, I wonder, you know, whether kind of on a cultural level introducing some of these competencies and skills into the credentialing process. And that, you know, folks at some level would have to be credentialed as providing effective communication to the patient, I don't know how you would kind of judge that but in essence it is, if you're talking about safety and, you know, whether or not you're credentialed to be able to do lumbar punctures perhaps it shouldn't be so different for being an effective communicator, but that's just a thought.

» Well, I think we often do it at the patient level, we assess patients to see how stressed out or anxious, or depressed they are, and then they go to the real experts but we don't think about consultation on the basis of our-- clinicians' clinical competencies. We might if it was spiritual care, we might say, "Listen, this is a place I know I get really uncomfortable, I'm going to call in the pastoral care person." But from a communication point of view it's so ubiquitous, it exists in everything that we do that we have more difficulty thinking about how I would identify where my shortcomings, where are the places that I get into difficulty and then I'm calling on you, you're my colleague who I rely on for this kind of conversation. If we had a team based care in which these were conversations that we could bring up collectively I do think that we would reach out to each other differently.

» Yes?

» Can I relate that the team exists and is called palliative care?

» Yes.

» So, I think that is the most important thing that whenever we have challenging patients and challenging communication issues and everything, it's important to involve that team because that team has proven to decrease the tension between the primary and the patient and the important thing is that it improves palliative care for the patients and also the caregivers.

» I totally agree, thank you for saying that. And most people who work in palliative care in cancer hear these same kinds of stories that I'm talking about. The left over effects of problematic communication often does come up in palliative care. What I would like though is to shift the philosophy of palliative care so that it's not simply end of life care but we bring the philosophy forward to the care of anybody with any kind of potentially chronic or life limiting condition, we start to have those conversations at a much earlier point.

» We've made some of these changes already and sometimes we are involved at diagnosis.

» Excellent, glad to hear it.

» Well, thank you very much Sally for coming over for Thanksgiving.

» [ Applause ]

» Thank you.

» Improving Communication in Cancer Care: The Patient’s Perspective (59:56)