Mitigating Stigma and Setting Boundaries

Dr. Timothy Gilligan and Dr. Calvin Chou discuss the updated guideline on patient-clinician communication in oncology. They highlight clinical recommendations and strategies on topics such as communication skills and practices that apply at every visit, principles for telehealth interactions, cross-disciplinary communication, facilitating involvement of the patient's support network, discussing prognosis, goals of care, treatment selection – including clinical trials, end-of-life discussions, overcoming barriers to communication, facilitating discussions of cost of care and financial toxicity, mitigating stigma, and setting boundaries with patients. Dr. Gilligan and Dr. Chou also share how clinicians can enhance their communication skills through skills practice opportunities and experiential learning. They discuss how fundamental communication is to optimal patient care and look to the future on how generative AI may impact healthcare communication. Read the full guideline, "Patient-Clinician Communication: ASCO Guideline Update"

TRANSCRIPT

This guideline, clinical tools and resources are available at www.asco.org/supportive-care-guidelines. Read the full text of the guideline and review authors' disclosures of potential conflicts of interest in the Journal of Clinical Oncology, https://ascopubs.org/doi/10.1200/JCO-26-00118

Brittany Harvey: Hello and welcome to the ASCO Guidelines podcast, one of ASCO's podcasts delivering timely information to keep you up to date on the latest changes, challenges, and advances in oncology. You can find all the shows, including this one, at asco.org/podcasts.

My name is Brittany Harvey, and today I am interviewing Dr. Timothy Gilligan from Taussig Cancer Institute and the Center for Excellence in Healthcare Communication at Cleveland Clinic, and Dr. Calvin Chou from the University of California and Veterans Affairs Health Care System in San Francisco, co-chairs on "Patient-Clinician Communication: ASCO Guideline Update."

Thank you for being here today, Dr. Gilligan and Dr. Chou.

Dr. Timothy Gilligan: Thank you for having us.

Dr. Calvin Chou: Delighted to be here.

Brittany Harvey: And then just before we discuss this guideline, I would like to note that ASCO takes great care in the development of its guidelines and ensuring that the ASCO Conflict of Interest Policy is followed for each guideline. The disclosures of potential conflicts of interest for the guideline panel, including Dr. Gilligan and Dr. Chou who have joined us here today, are available online with the publication of the guideline in the Journal of Clinical Oncology, which is linked in the show notes.

So then I would like to dive into what we are here really today to talk about. So Dr. Gilligan, this guideline updates the patient-clinician communication guideline that was first published in 2017. What prompted this update and what is the scope of this updated guideline?

Dr. Timothy Gilligan: So I think with the first guideline, that was the first draft of it that we published five or six, seven years ago, really we were focused on getting the content right, what was the state of the knowledge at that time, and I was very happy with what came out of that. But when I looked back on it, I thought there were ways we could make it more accessible and more practical. Because what we really would like would be for people to apply what we know and then communicate more effectively with patients and colleagues. And one of the reasons I was really excited on the membership of the panel we had this time was I thought they were very well selected to help us do that, is to really think about what are practical guidelines, practical steps we can tell people to take that will improve their own experience and the experience of patients and the quality of care.

Brittany Harvey: Absolutely, thinking about operationalizing that guideline really improves the dissemination and the uptake of these recommendations.

So then, Dr. Chou, I would like to review the key recommendations and strategies across the clinical questions that the guideline addressed. I realize today with our limited time we may not be able to go through every recommendation and strategy, so we will start with some of the highlights. First, let's address the highlights of the process of communication with patients and their support networks. This includes the questions that address what communication skills and practices apply at every visit across the continuum of care, principles for telehealth interactions, cross-disciplinary communication, and facilitating involvement of the patient's support network. In your view, what are the most important recommendations across these clinical questions?

Dr. Calvin Chou: I think the thing that all clinicians know in their bones that they want to be able to do effectively with patients is to communicate information clearly, as well as to communicate in a way that really deepens the relationship, demonstrates empathy, and also demonstrates understanding bilaterally between the various parties. So the communication guidelines that we established in this group, they are fundamental to communication in all conversations throughout healthcare. And the first guideline talks about how clinicians and their team can communicate effectively with the patient and the patient's support network. And those include things like preparing ahead of time; getting a list of the topics that are important to the patient support network so that we can consider them in the visit; making certain that we are hearing what the patients' and the patients' support networks are saying very, very closely; responding to those empathically; and being able to have conversations about care throughout the visit that demonstrate respect and deepen the trust; and then finally, to have some kind of bidirectional understanding, usually through teach-back, that allow both sides to know that communication has occurred as opposed to just been downloaded.

The guidelines also talk about applying these same communication skills throughout telehealth communication - that is both in terms of synchronous communication, audio or video, as well as asynchronous communication, i.e., through secure messaging. We also talk about how we can use these same communication skills to communicate effectively with members of our own team. Interprofessional communication is an important part of all the work that we do, and how we can use these very, very same skills in communication with colleagues, with nursing staff, with social workers, and other allied health professionals. These are all very, very important, crucial members of our healthcare team in the delivery of care to our patients. And that is something that we really need to emphasize throughout to try to bring the best of communication in every conversation that we have.

Dr. Timothy Gilligan: I totally agree with that. Those are really important points. When I was looking over it in preparation for this podcast, it struck me that we have a lot of recommendations and a lot of small things that we can do either well or not well. And it reminded me of a quotation from a famous chef, Marco Pierre White, who said that perfection is a lot of little things done well. This guideline has a lot of little things that if you do them well, you get better outcomes. And I think the chef's point was that if you want a really delicious dish, you have to pay attention to all those little details. And I think if people go through the guidelines carefully and apply the skills that are along the lines of what Dr. Chou was talking about, we get better results. And those results are really important results. It is not only patient satisfaction, which is really important, but it is also quality of care and outcomes for patients. It is better medical care. It is a better day for us, we have a better day if we have better conversations. Poor communication creates endless headaches for everybody.

What I see in the guidelines is it is a lot of little best practices and it requires discipline to learn those. The good news is none of them I don't think are all that hard. The bad news is doing it consistently well every day requires discipline and practice. And what I would hope for these guidelines is that people will read them carefully and think about what they can do to apply what we know more consistently.

And I think the interprofessional communication piece, that was something we added this year, is really critical. Medicine has a bad history of really disrespectful behavior. It was almost normalized that different specialties would make fun of each other, that different professions would talk disrespectfully of each other. And we know now that uncivil behavior results in more healthcare errors. And it is not only bad for our teams and our culture, but it is bad for our patients if we are not communicating well with each other. So I thought it was really critical that we added that piece to the update.

Brittany Harvey: Absolutely. Those fundamental principles that Dr. Chou outlined are really key across every healthcare interaction, including those interdisciplinary interactions. And as you alluded to, Dr. Gilligan, I think it will really serve clinicians well to review the details and go through every table to read the recommendations and each individual strategy to help them improve their communication in day-to-day interactions.

Moving to some of those day-to-day clinical communication scenarios, Dr. Gilligan, I'd like to think through some of those key points. So what is recommended for discussion of prognosis, goals of care, treatment selection, including discussion of clinical trials, and end-of-life discussions?

Dr. Timothy Gilligan: So my perspective is that there is a broad theme of flattening the hierarchy that runs through these recommendations and this part of the guideline - that the sections that Dr. Chou just talked about really have a lot to do with the details. What does good communication look like? What are best practices that we can adopt? And I think these other sections are a little bit more, they also have a lot of specific guidelines, but there is a philosophical point that we do better when we talk to the patient at their own level. And we sometimes fail to do that. I remember from about 10 years ago I was in a room with a patient and one of the other doctors said to the patient, "We're going to bronch you tomorrow." And I was trying to think, like, what do they think the patient hears when we use language like that? Like they don't understand what the word means. We are just expecting them to step up to our level. We are not accommodating them, and I think that really interferes with our ability to form effective relationships with patients and communicate clearly.

So if we are going to talk about prognosis, goals of care, treatment selection, clinical trials, end of life, the first step for me is that we have to get down to the patient's level, which means listening. We have to ask them what they know, we have to get their perspective. We have to understand what their health literacy level is so that we can have a conversation that takes into account the patient's perspective. And we need to be humble and remember that the patient often has information that we do not have yet unless we ask them and listen to what they say. That is going to change what we think is the best plan of care. And so shared decision-making is really a critical piece of that.

One of my favorite trainers who I follow online says, "I make suggestions, you make decisions." And I like to bring that attitude into the room when I talk to patients. It is their life, it is their body, it is their health, it is their decision. It is not my decision. I don't get to tell them what to do. I want to make sure that they make a decision that is based on the best available evidence, but also a decision that is based on who they are and what their values are. And we try to give pointers to how we can have these conversations in a way that is really fully respectful of the patient's autonomy and the importance of the patient's expertise in their own body, their own lived experience. Because there is a risk that we come in with our white coat and we overpower them with our authority, our medical authority, our medical knowledge, and no one likes to be overpowered. And I think we all have a better day if we go in and have a conversation as human beings with each other.

Dr. Calvin Chou: I want to underscore this point of having the patient and their support network make the ultimate decisions. Reviewing the evidence from more general literature, it is clear that across demographics that only 10% of patients want us to make decisions for them. 90% of patients want to have at least some say, if not full say, in the decisions that they make, and this is true across age, across gender, educational status, socioeconomic status, veteran status. This is a very, very important point. I think oftentimes we go in thinking we know what's going to happen and we need to make them do that. Thinking about this as a conversation as opposed to a download is an important point.

Dr. Timothy Gilligan: And one thing that I think that the guidelines are relevant for here, which is I think one way to achieve honoring the patient autonomy, is to really make a commitment to having a good process, to not be committed to an outcome. So that when we start the conversation, we're not going to say it's a good conversation based on whether it ends up where I wanted it to end up. It's a good conversation based on whether we have a good process, a fair process. And the steps of good communication that are outlined in this guideline help us to establish a good process. And I think if we have a good process, we can trust it will take us to the appropriate outcome, which may be different than the outcome we thought was going to be the appropriate outcome when we started the conversation.

Brittany Harvey: Definitely. I think, as you mentioned, tailoring discussions to each individual patient and situation is really critical. And I think in every other podcast episode across guidelines we've really emphasized the importance of shared decision-making. And so talking through the process of it in this guideline will really have impacts across all of ASCO's guidelines.

Moving on to the next section of the guideline, this guideline also addresses barriers in the communication process. So Dr. Gilligan, what highlights are there for overcoming barriers to communication, facilitating discussions of cost of care and financial toxicity, mitigating stigma, and setting boundaries with patients?

Dr. Timothy Gilligan: Yeah, it's interesting. I want to hear Dr. Chou's perspective on this too. I thought that the communication skills are really important for these conversations, but less powerful or less effective, potentially. For instance, barriers to communication, the big one that comes to mind is language differences. If the patient and the clinician do not share the same language, that results in less good care unfortunately. It results in less good communication. Having skilled translators or interpreters there is essential, and using them with skill is essential, but it does not get us to equality. I mean the best thing for a patient is to have a clinician who speaks their language. Unfortunately, that's not possible. So the second best thing we can do is to have good interpreters or translators to help us work. And then for us to use those people effectively, because oftentimes we cut corners when working with interpreters and shortchange the patient. So it is important to do the best we can. I think it is also important to acknowledge that it's a challenge and no matter how good your communication skills are, it's not going to be the same conversation if you're talking through another person versus directly to the patient.

Similarly, with financial toxicity, it is important to talk about it. We need to be open about it. We need to talk to patients about it, but financial stress from healthcare is a real problem, and however well you communicate it, it doesn't make that problem go away. You know, in oncology, our drugs are obscenely expensive, and I can't communicate my way to lower prices. So I can talk about it and legitimize it and empathize, but I feel like I have more power in the other sections to really change the outcome by communicating well than I do with these. But it is important to talk about it. Patients are hugely affected by the cost of care and we need to talk about it with them.

I do think for mitigating stigma and setting boundaries, then our communication skills become more powerful. We see everyone in the healthcare system, and when working with individuals who have been subject to stigma because of aspects of their identity, we can help lessen their vulnerability and fear by proactively letting them know that we will strive to avoid perpetuating that stigma, that we will treat them with respect and address them as they wish to be addressed, that we will care for them as dignified and valued human beings. That is not always their experience in the system, but we can choose to be different. We can choose to do better. And our communication skills are important because listening and curiosity are super important in that space. Because if we are talking to people who may be different from us, we need to learn about them by listening and being open and being curious, and replacing, if we have any tendency towards judgment, to replace judgment with curiosity.

With setting boundaries, I think it is also really important. I don't think you can show up and be fully present with patients the way I want to, the way we want other people to, if we don't know that there are boundaries. And we know this in other aspects of our care, right? I go into the room and I do intimate physical exams and I ask about intimate aspects of the patient's life. And I'm allowed to do that because there is a non-negotiable barrier to any kind of sexual or romantic contact between me and my patients. We know there's a hard wall there that we don't cross that line, so that when I am doing an intimate exam, we know where that stops and that we're not going to cross boundaries there. But the same thing applies verbally, and I think doctors sometimes and other healthcare professionals sometimes feel like they need to accommodate the patient no matter what. I was hoping the guidelines would send a strong message that, you know, we don't need to put up with disrespectful behavior. That when you go into the room, as a clinician or as a patient, you should be treated with respect. You should feel safe, you should feel like you belong, and if patients are behaving in a way that violates that, then clinicians have a right to speak up and to set limits and to set boundaries. And if we know those boundaries are there, then I think we can lean in closer. If we don't know those boundaries are there, then we kind of have to hold back to protect ourselves.

And just to give one of like a million examples you can give, I don't know a woman in healthcare who hasn't had a patient say something sexually inappropriate to them at some point. And that's not okay. I want my colleagues to know that's not okay, and it's okay to set boundaries and they don't have to put up with that. And my hope is that if we know where the boundaries are, then we can step in closer. That's my perspective on these, but Calvin, please, I'd love to hear your thoughts.

Dr. Calvin Chou: I want to double-click on everything that you said, Tim. It is so important that we recognize what we have control over and what we don't have control over. And what we don't have control over, for example, language discordance or financial woes of a patient, I have no possible way of controlling that. And so the best I can do in those situations is to sit with them, empathize, and do what I can, whatever power I might have in advocacy or I often refer folks to a social worker that I work very, very closely with, because I have no agency over any of that.

At the same time, when we talk about mitigating stigma in healthcare encounters, we have full control over the biases that we have. We may not be aware of them, but we do have control over them ultimately. And so it is up to us really to examine our practices, to see where we have maybe been steered in the wrong direction, where we double down on internal implicit biases that we have carried for our entire lives. And that requires that we approach all of our encounters with everybody in healthcare, with humility, and with an extra eye toward understanding how we are coming across to them, and whether or not at least some of those interactions are infused with bias that we can decrease.

And then finally, with the idea of boundaries, there are boundaries in two directions, as Tim was saying a moment ago, that there are boundaries that we must place in between ourselves and patients during examinations and also during interactions. And there's also boundaries that we have to set up that require that we uphold the standards ethically of clinical medicine. And that is, there are certain things- I would never ask a patient out, for example, on a date. And that's an important proscription; that's an important boundary that we must set up between ourselves and patients. Those are clear barriers that we must not breach. There are some barriers that are a little bit less clear. For example, there are some instances where physicians are asking patients who have means to perhaps contribute to a foundation or contribute to the university or to make a large donation to an institution. In some instances, that's a much less clear boundary. For myself, I feel uncomfortable making those kinds of requests, and there are other instances where those requests are actually not just okay to do, but the patient is willing to do those kinds of things. So I think we need to consider that these boundaries are not always set in stone. Sometimes the boundaries move, sometimes the boundaries are different.

Brittany Harvey: Absolutely. I think this latest question covered a lot of ground, and I think some key points here are that treating everyone with dignity is really paramount to this guideline. Recognizing the challenges even when they're not solvable is really important, such as thinking about financial issues or perhaps not speaking the same language as a patient. And then building trust and mutual respect between patients and clinicians to establish clear boundaries is really important as well.

So, I want to thank you both for reviewing at a high level the recommendations and the strategies from this guideline, and I encourage listeners to review the full guideline and tables for all of the recommendations and strategies to implement these clinical recommendations.

So, Dr. Chou, this guideline panel also addressed one education question. So, what are the recommendations for effective ways for clinicians to enhance their communication skills?

Dr. Calvin Chou: Thanks for asking, Brittany. When we talk about all of these communication skills, Dr. Gilligan and I have talked for a long time about all these individual communication skills. These are not skills that are necessarily naturally formed within us and that we just roll out without any practice. And that's why we both feel, if I can speak for you, Tim, that we both feel that communication skills training, and high-quality communication skills training, is deeply important. This is training that is less about I'm listening to this podcast and therefore I can communicate better, it's more about skills practice opportunities, experiential learning, oftentimes using that horrifying word 'roleplay' that people don't like to think about roleplay before they're in it, but then once they've done those skills exercises they realize how important it is to actually have practiced some of these skills so that when you get into the real situation, you have an approach to it as opposed to trying to just improvise or make it up on the fly.

The other aspect of communication skills training that is deeply important is not just forming the words and speaking to somebody else, it also needs to incorporate practitioner self-awareness and situational awareness that allows us to understand what's going on within us emotionally and attitudinally so that we are interacting moment by moment with patients and their support networks in a way that's authentic, that brings the appropriate amount of vulnerability and expertise to deepen trust between all of those relationships.

And finally, when we talk about communication skills training, there are ways to do this kind of training that, I've used ChatGPT, for example, when I'm having some difficulty wondering how to navigate a particular situation, sometimes you can use ChatGPT to give you some suggestions on how to approach that interaction. But at the same time, the most important thing is to be able to have really meaningful practice with other people, with other human beings. Because as much as I might interact with a computer, that computer is not a human being. And what we are talking about is interpersonal communication with emphasis on 'person'. And us as human beings, we understand, in a way that ChatGPT probably will never fully understand, the nuances of the emotional reactions and the importance of human connection between people when we talk to each other. And so therefore, if we can't depend on computers to do this communication skills training, we need institutions to emphasize and invest in all of our continuing ability to communicate effectively with everybody in healthcare. This is probably one of the most important outcomes of this guideline, is not just that communication skills are important, and not just that communication skills training is important, it's that we need everybody to invest in everybody's ability to communicate with each other on the highest possible level that we can bring.

Brittany Harvey: Yes, I think it's really important that the panel addressed this question, to emphasize that it's not just individual clinicians, but institutions that really need to value communication and this training to make sure that clinicians are being the most effective communicators that they can be.

So, I'd like to move on to the next question, and Dr. Gilligan, ask, in your view, what is the importance of this guideline and how will it impact both clinicians and people with cancer?

Dr. Timothy Gilligan: So I would build off of what Dr. Chou was just talking about, which is what we're hoping is that it will serve as a resource that will give people interested in communicating better guidance on where to go, what to do, what are the best practices, what do we know at this time. if you want to get better, what are the methods that are going to help you get better. And ideally I hope it will inspire people to want to get better. Communicating is such a fundamental part of our day-to-day work in healthcare that it needs to be something that we're very, very good at. And as professionals we should aspire to be as good as possible.

A lot of this stuff is pretty basic, but we forget to do it. When I had young kids and was teaching them to ski, one of the ski instructors said to me once that there were Olympic skiers who trained at the same mountain where my kids were learning. And he said they would go down easy slopes and just practice basic techniques still. They were good enough to ski in the Olympics going at crazy speeds, but they kept going back to their fundamentals. And my son is a serious soccer player and they do role plays in soccer. They practice drills. They have scenarios they know are going to come up and they artificially recreate that scenario and they practice it over and over again. There's a famous line from a college football coach that you don't practice it until you get it right, you practice it until you can't get it wrong. And I think if people would bring that sense of professionalism to communication, it's a lifelong journey. I'm still trying to get better. It requires practice, it requires discipline. There's a lot that we know, but it doesn't happen without practice.

And as Dr. Chou was saying, it's a motor skill. You don't learn it by reading about it. You don't learn it by listening to us talk about it. You learn it by practicing it. And I practice with patients. Not in the sense that I'm doing an experiment, but I work on my skills with patients. And I see how it goes. And when things don't go well, I think of what I could have done differently. And when things do go well, I think of what did I do that helped it go well that I need to make sure I do again next time. And I think I'd love to see people adopt an attitude that they want to be fantastic communicators and they want to get better. And I think the guidelines provide a lot of clues and steps to take for all of us to get better.

Dr. Calvin Chou: I heard Tim, you talk about communication being a procedure and that we would never think about going into a room and sticking a central line into a patient without having practiced that over and over and over again to get it right. Not to get it right, to never get it wrong, like you were just saying. And so if we think about communication as the most common procedure in healthcare, then it behooves us all to do the best we can with it. It is a frame shift because we are communicating with each other all the time, oftentimes without thinking. And what we're advocating right now is for everyone to really bring it in terms of communication skills in all settings, because the effect of ineffective communication is not necessarily just making people feel bad. As Tim said at the top of the program, it also impinges on quality of care. It's not just the right thing to do, it's the safe thing to do.

Brittany Harvey: Absolutely. And highlighting the fundamentals here and practicing them as clinicians will improve each healthcare interaction.

So then, finally, to wrap us up, Dr. Chou, earlier you mentioned ChatGPT and thinking about maybe some technological advances and how those will impact in the future. What are the outstanding questions and priorities for future research for optimal patient-clinician communication?

Dr. Calvin Chou: I think there's a lot we still need to learn about in this very, very nascent time of interacting with generative artificial intelligence. We won't know what things are going to be like probably even tomorrow given the vast advances that AI is allowing us to do. And also, as I was mentioning earlier, what AI can never do is to bring the human element into these interactions. And I think that's part of what, maybe that's a lot of what brings people to healthcare, is if they're in need and they have some physical issue that we need to help them solve, it's not just a physical issue, it also is a deep emotional experience.

And we have heard many times now cautionary tales of when AI has led people astray to then, for example, allow them to die by suicide. And that is the last thing that we can allow to happen in healthcare. That is the ultimate low-quality item. We need to make certain that everybody is cared for with high quality and high safety. And we're definitely not there yet with AI. We hope that at some point we'll be able to work with AI in order to bring even better healthcare than we have right now, and I think that has been demonstrated to be possible. That is one major outstanding question that we're all going to have to wrestle with.

Brittany Harvey: I think that's absolutely a key point. With generative AI quickly evolving, there need to be guardrails in place. And like any intervention, thinking about how to maximize the benefits of it and reduce the harms to make sure that you're preserving that human interaction and communicating effectively, and that patients can receive their health information in an appropriate way.

So I want to thank you both so much for your work to update this guideline, to draft all of these recommendations and the strategies, and work with the entire panel to create this excellent product. So thank you for all that work and thank you for your time today, Dr. Chou and Dr. Gilligan.

Dr. Timothy Gilligan: Thank you.

Dr. Calvin Chou: Thank you, Brittany, so much.

Brittany Harvey: And finally, thank you to all of our listeners for tuning in to the ASCO Guidelines podcast. To read the full guideline, go to www.asco.org/supportive-care-guidelines. You can also find many of our guidelines and interactive resources in the free ASCO Guidelines app available in the Apple App Store or the Google Play Store. If you have enjoyed what you have heard today, please rate and review the podcast and be sure to subscribe so you never miss an episode.

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