Transcription:
Improving Communication Among Physicians, Patients and Loved Ones

Dr. John Leonard (Host):  Welcome to Weill Cornell Medicine CancerCast: Conversations About New Developments in Medicine, Cancer Care and Research. I’m your host Dr. John Leonard. And today we’ll be talking about improving communication among physicians, patients and loved ones. I’m really happy today to have as my guest Dr. Holly Prigerson. Dr. Prigerson is the Irving Sherwood Wright Professor of Geriatrics at Weill Cornell Medicine and Co-Director of the Cornell Center for Research on End of Life Care. Dr. Prigerson’s research examines psychosocial and behavioral influences on medical care and outcomes for patients and families confronting life threatening illnesses. She has served as Principle Investigator on multiple NIH investigations that focus on cancer patient and caregiver quality of life, racial and ethnic disparities in cancer care. So, Holly, it’s great to have you here today. So, I know you’ve worked and are really a leading expert in the area around communication between physicians and patients and caregivers. And this is obviously so important as patients go through their journey on many different levels. I want to start just by asking you how did you start off your career in this area? 

Dr. Prigerson:  Well I’ve had a variety of personal experiences and professional experiences that have really made me appreciate that patients often don’t understand what their doctors are saying, and they are afraid to ask them questions. And when they get the answers that they do ask questions to, they are often confused, and they don’t want to admit that they don’t understand what the doctor just said. so, they leave kind of more confused than when they came but with more information.

So, I listen to scanned results discussions and tapes and I experienced my own parents and grandparents care and have been struck by how patients are sitting there, and their family members are sitting there trying to almost impress the doctor and please the doctor and they are afraid to ask what’s on their mind. And I see this real missed opportunity both on the part of the patients to understand what’s really going on with them and on the part of clinicians to realize that they are kind of talking past patients so that patients aren’t really understanding the words that are coming out of their physician’s mouth.

Host:  So, maybe you could start by just giving us a couple of examples of kind of the good or the successful and or the bad or less successful as you see them.

Dr. Prigerson:  We do what we call cohort studies where we have a group of patients and their family members that we follow through the illness trajectory. And we were struck by the fact that patients who were actually within just months of dying, really had no idea that they were just that close to death. We have one statistic that 95% of patients who were that close to death didn’t understand that they had incurable cancer, didn’t understand that they were terminally ill at an end stage of their illness and likely had months not years left to live. No one has a crystal ball and not every patient or family member wants to talk about death and dying, know intricate details of their prognosis or their diagnosis or the biochemistry of treatments. But we feel like we have a responsibility to both educate physicians on what patients are missing and also educate patients and families to speak up until they are satisfied with the amount of information that they get about very specific things that are going to decide whether they choose a treatment or don’t choose a treatment, whether they go to one doctor or another.

So, that’s sort of how I got into it. Some examples for mostly a shockingly poor understanding of someone’s prognosis and we need to do something to improve patients to the extent they want to have a better grasp of why they are seeing that doctor. So, another example, is bone marrow transplant. That’s less about choosing certain treatments or not because there are fewer choices in that scenario, but we were struck by the fact that hematologists came to us and said, “Your approach to improving physician communication might apply very well to our circumstance where we provide informed consent about what transplantation might involve. Yet we are disappointed and struck by the fact that patients who develop some of the adverse side effects like graft versus host disease are shocked or surprised that that has happened to them.” That shouldn’t – we feel like that should be the case.

And so, those are some examples of opportunities to improve communication both on the parts of what the physician is saying and also what the patients and families are hearing and asking.

Host:  So, as I think any physician or caregiver would say, we do want to communicate. We do want to make sure that patients understand the situation. But clearly, this must happen for a reason and one reason that comes to mind is this time. People don’t have the time to do it. Maybe they don’t have the skills but why is it that this happens? And I guess that’s the first step and then addressing it. But why do these – it almost sounds like a telephone game, the old game where it starts with one description of an event and then ends up being a totally different one. Why does that happen in this situation?

Dr. Prigerson:  Yeah, so, I don’t know for certain what the answer to that is but I suspect one of the contributing factors is physicians aren’t really trained in how to communicate in a way that improves comprehension on the part of the patient. They are trained to say this drug is likely to be effective for this, for this amount of time, these are possible side effects. But they don’t say – so an example is we analyzed a lot of transcripts and audio tape discussions of oncologists specifically revealing scan results to say whether a tumor has been growing on treatment, whether it’s stable or shrinking. And we are shocked by the fact that the communication is all about the size of the tumor or a euphemism about the rate of growth or the lack of rate of growth that’s not even geometrically accurate.

So, people are talking past it. I don’t think that physicians or oncologists specifically are trying to mislead patients. But they fall back on what they are comfortable talking about. And they are comfortable talking about a test result that says malignancy is .5 centimeters and it’s growing to some other- they are comfortable saying that because it’s accurate, that’s what the test reads out. But they’re not good at saying is what the patient needs – they are not thinking about it from the patient’s perspective. From the patient’s perspective, they really only and also in terms of their decision making, all they really need to know I would think or what they most want to know, are these – what in this just framework they call verbatim details. Sizes of tumors probably are of some interest to some patients and their families but what they really want to know is am I getting better. Am I getting worse? Have I stayed the same?

If I’m getting worse on this treatment, does that mean I shouldn’t try that anymore? Does that mean I should try a different treatment that might work? Or does that mean that I’ve exhausted all my options? So, what we’re trying to impress upon oncologists specifically, is to communicate scan results in a way that would be better, worse, the same. Communicate treatment recommendations that are consumable by a patient or family. So, should I try this and why? If you say that I should try this chemotherapy because it’s going to enhance my chance of survival, how long are you talking? Like what are the bounds of it likely survival benefit that – because a lot of the communication tends to be black and white like yes or no. Yes this will improve my survival, no it won’t when there’s probably a lot more gray that’s a lot more difficult and nuanced and more challenging to predict in the first place.

So, I think oncologists aren’t trying to be confusing or disingenuous, but they want to stick to the facts, and they want to stick to what they know, and they are not thinking about what the patient needs to be an informed consumer.

Host:  So, do you think a large number of patients – I mean I think and I’m just sharing my own experience. It strikes me that I agree 100% that the level of detail and the nature of the detail that a patient may want or expect, number one, it is probably variable but number two, there is probably a mismatch in many cases between what the doctor provides, and the patient wants or expects. But do you think really patients walk out of the office not knowing if they are better, worse or the same? It seems to me like I might not be good at matching what I tell a patient but generally, I would think, and I would think most people would think that my patients walk out having a general sense of the direction of things. Is that a sense of that –

Dr. Prigerson:  So I give a very concrete – this might be too technical example. We have patients who have had very advanced stage 4 pancreatic cancer. They have progressed on at least two prior lines of chemotherapy. They are in and the tumor – the scan results says that their tumor is growing, the malignancy is growing even on this third or fourth line. Those are the patients we’ve interviewed, and we asked them if they think they are curable. And many of them, I’d say 40 to 50% think that they still have curable cancer. They leave that conversation thinking that they are not terminally ill, that they are not at a late or end stage of their disease and that they likely have multiple years left to live.

So, no, I don’t think they are leaving it with – and that’s what I think this sort of education of physicians has to be about. They are like well I – the perfect example was a long, many, many moons ago for my dissertation. I was at Stanford looking at cycling, I would ride my bike to the patients and the doctors and interview them. And one patient I was referred to was in a very advanced stage of cancer.

And I was recruiting this patient through his daughter. And the daughter says why are you talking about all these sort of like end of life questions. You act as if my dad’s at death’s door. And I said well what has your oncologist told you about your father’s illness? And she said they said he had advanced disease, but they didn’t say he’s dying. And that doesn’t mean he’s dying. And so I took from that, that was many decades ago, but I was struck. I went back to the oncologist. I said what did you tell the daughter and she said I told her that her dad had advanced cancer. So, it was all very accurate but everyone’s talking past each other because she was thinking advanced meant unsophisticated cancer, I don’t know. Whatever she took from what the oncologist thought they were communicating was not being heard in the way that the oncologist meant it to be heard.

Host:  So, I know, and this is a major focus of your research of how to deal with this problem, how to prevent it and understand it. So, for those in our audience that are patients or family members of patients that are trying to avoid this miscommunication; what sorts of tips or suggestions do you have for patients and families from their perspective to make sure that they are getting the information they need and the understanding they need if they are encountering this?

Dr. Prigerson:  Right. So, first off, I want to say that I think a provider, an oncologist, any healthcare provider needs to be attuned to where the patient is coming from, psychologically, culturally, spiritually and in certain cultures it’s forbidden to actually have the patient discuss their treatment. In fact, we just saw that movie “The Farewell” about a Chinese grandmother who is dying and the whole premise is – the movie starts out by this is the truth about a lie. And the lie was that no one was telling grandma that she had terminal lung cancer.

So, first I think providers need to understand where the patient and family is coming from and not disrespect a cultural prescription for either talking about something but assuming that you are in a culture where there is a value on patients understanding and making informed choices and participating in a shared decision making framework. So, everyone has to be agreeing that that’s what they want.

We’ve also found that there are other barriers before even getting to how they should approach this. one of the most significant barriers to patients accurately hearing for example, scan results we found is anxiety. So, if a patient is extremely anxious; we found that their likelihood of accurately hearing that discussion of whether things were better, same, worse, significantly dropped. Somewhat paradoxically, depression actually increases your ability to process and hear bad news. It’s almost a confirmation. There is deep psychological literature on that. So, the first step would be acknowledge whether there is a willingness on the family and the patient to even want to have this discussion and address any sort of psychological issues, fears, thoughts about wanting and praying for a miracle.

So, all those cultural psychosocial issues need to be sort of addressed before proceeding to actual the nuts and bolts of the facts of someone’s prognosis. But then if I were a patient, what I would want to be a “informed consumer” of health care would be if I’m being offered a treatment, a chemotherapy; I want to know what is my prognosis and a lot of people don’t really know what the word prognosis means. And what at least we mean by the word prognosis is I want to know what my chances of survival are, and I want to know specifics. Not everybody wants to know specifics but personally, I would, but I would probe if what you want to understand is, is this treatment even intended to cure me. I think you should know that before signing an informed consent to say I want more, another line of chemotherapy regimen; you should have a very clear understanding what the intent, even the intent of that treatment is.

So, and I don’t think oncologists would resent or feel put upon to make those clarifications. But you could answer that better than I could. The other thing I would want to know is what’s going to be involved in this course of treatment. So, for example, with the bone marrow transplantation, it’s such an involved, very complicated, lengthy, weeks in the hospital, arduous process. I would want to have some preparation. Just like when I go to the dentist and the dentist tells me before they are about to do something, preparation gives patients a sense of control about what they’ve signed up for.

And again, some people might want to not know, and they prefer to approach it from that perspective and in some cultures, that might be the preferred way to go. But for patients who want to know, which I think we have data that suggests even advanced cancer patients like 71% said that they wanted their doctor to talk about prognosis and what treatments would involve. We think that if asked, the oncologist should provide and share that information. Not trying to scare somebody. And I think that that’s – you had asked why, what’s the reluctance on the part of the oncologist – I think if I were an oncologist, I would be concerned about providing too much information that might be misunderstood or upsetting people or making them needlessly hopeless when there would be no benefit in that.

And what we’re saying is, patients usually have some sense of the severity, ballpark severity. If they want to know more, they should put those very specific questions about how long they think they have left to live, what does this treatment likely to involve, what are the most common side effects, also in terms of quality of life. Don’t just tell me side effects. Tell me am I likely to feel better or worse. How much of my day am I going to be in bed because of this? So, painting a clearer, like more pixels in the picture of what treatment is going to feel like for them would be one thing we would advocate.

And then lastly, trying to align what patients goals are and making sure that the oncologist understands given certain trade offs with treatments and side effects and different priorities; rather than just always wanting to do more which seems – we have data that suggests there is a tendency to just treat because you can. And it feel so much better than doing nothing. And especially when you are fighting a very powerful adversary like cancer; you want to fight back. I think that’s just a human inclination, impulse to want to fight something. But some people – I think oncologists need to also hear that if given all the information and a patient decides I don’t want to fight this anymore; I’ve given it a good shot and I want my quality of life and my time spent with my family now. I want to maximize the quality of life with that quality of time; that the treatment decisions made are in line with those realigned preferences. So, that on the part of the provider, that they also get the gist as we say, of what the patient would want if they were truly informed.

Host:  So, there are times with a patient that I have said, in your situation, 80% of people are cured, or 10% of people are cured, or the average person lives this long, but some people live that long and some people live the other long. That can be very helpful. I mean that to me, seems to be giving a lot of information and fairly directly from the standpoint of reading a study showing to the extent that that’s accurate, telling someone that specifically. And clearly, I’ve seen patients that responded very well to that and others that don’t really want to hear that level of detail and I think one of the themes that you’ve highlighted is understanding what the patient wants to know, the level of detail. And clearly, that’s a spectrum. So, my question is how do I as a physician or how do I as a patient recognizing that there is a lot of gray in the level of detail; how does one either figure out what one wants to know and how does one either ask or convey the level that one wants to know? Because it strikes me that those are going to be – they may match up very well and certain patients are very, very specific and are reading journal articles and want data and others are just like I trust you, do what you think is best. And obviously, most people are in between. How do you calibrate that as a patient and as a caregiver?

Dr. Prigerson:  So, I would break it down. I would say for a patient and family member, I would go into the clinic meeting even writing down, possibly even bringing in an audio recorder. Ask what is it you want to know from this oncologist. If barring any sort of embarrassment, maybe they have discussed something before, and you are embarrassed that you don’t remember the name of the drug or how long you were on things. Putting all that aside, what is it you want to leave this clinic visit having a solid understanding of? And write that down before you go into meet with your physician or possibly even email them or send them in advance that these are my talking points, I want to understand these things.

So, I think you’re expressing concern that some patients want to hear a lot, some want a little. And how do I modify my approach based on their preferences? And I think one way to go would be first you think through before you meet with the patient, what do you think as in like cognitive interviewing, what do you want that patient to know as a bare essential to be an informed consumer? Now some of the patients are probably not going to want to even know what you think is bare minimum. So, you have to first say, I think as an informed consumer of – or other lay term or however you want to put it, but say, how much about this do you want to know. Do you want to know about life expectancy? Do you want to know about side effects? Do you want to know what’s involved and how many times a day? I think you need to know these things to make an informed choice, but some people would rather not be bothered with all that detail.

So, go in there with the bare minimum of what you think that they need to know. If they don’t want that and there’s an opportunity to not talk about those things; then you can say okay so right now we don’t -we’ll put a pin in that, and we can talk about that at a future visit. But you need to say these are the bare minimum. If the patient says okay, yes, I want to know all those things and more; there’s nothing to prevent you from going with what we call the verbatim details. So, we’re not saying that you should say only gist; we’re saying that’s the starting point. So, figure out if they are willing to hear just the gist of what you think they need to know. If they are and want more, then you provide as many details as they are asking you for.

But what bothers us is, when we listen to these audio tapes; it’s all just gibberish. I’m sorry. It’s like we had an oncologists in the room listening too and I’m like I don’t know what that person just said. and it’s just sort of heard from the patient as a lot of technical details that are not useful to them. So, we’re just saying – we’re not saying simplify, we’re not saying dumb down per se or even shorten. What we are saying is think of communication in terms of what do you want them to leave with and what did they want to leave with knowing and then go from there.

Host:  So, I was stuck by your comment about how patients may be either embarrassed to say that they missed something that the doctor said or even kind of want to please the doctor. Is that just simple human nature? Is there something around that? I mean I try to remind patients that I work for them and that their job is not to make my life easier so to speak but the other way around. Is there a quick tip or a thought that you would convey to patients just to make sure that they don’t fall into that trap?

Dr. Prigerson:  Well, I would I guess personalize it and say that if I were you, I think it’s a lot of information to process. Even I who I’m familiar with a lot of these terms, if I were in your shoes, there are a lot of things that get in the way of accurate understanding. One is nerves and lack of familiarity and another is just a bunch of technical terms that you might be processing, what is that word and then while I’m saying certain things, your mind might digress. So, I would say – I would humanize yourself by saying it’s a lot to digest right now. And I understand that.

And a lot of things it’s like when you go shopping and you’re looking for music in a music store, they don’t even have these anymore, but I remember always going to a record shop and thinking that I wanted some record and then going there and always forgetting the record that I wanted. And I think that making yourself human and appreciating how much information they are consuming and how challenging the circumstances are, especially given nerves and the stakes are high. Let’s face it, you’re not just talking about the weather. You’re talking about their life. And that makes it even harder to understand a lot of complicated information. Giving them options to contact you after the visit, telling them that you’re happy if they bring along a companion who might help them sort of translate the medical-ese, to audio tape it and to welcome a follow up clarification of some points that they might not have understood while you were talking.

Host:  I’m struck by what you said because I was in clinic yesterday and one of my colleagues was talking about a patient they were seeing in second opinion and the patient, they were relating the story of the patient describing their other physician, not here, who could have been describing what you just outlined that that person was using terms, their other doctor was using terms they couldn’t follow and was three steps ahead of them and while they were trying to figure out what they had just said, they were missing what the new the person said. So, I think it’s a very, very interesting and important phenomenon. I want to ask you, family members. So, family members it strikes me could be challenging in this regard sometimes but also helpful in this regard. So, for family members, a couple of quick tips on how to make that participation helpful and productive as opposed to perhaps counterproductive.

Dr. Prigerson:  Right so, I assume a lot of times it’s the husband and the wife is the one asking all the questions. The husband’s the patient. The wife is asking all the questions and in that situation it’s not necessarily at odds because – we have studied this actually; I’m not just talking. The wives are better communicators and they are also better at hearing accurately what their oncologists have shared. So, we’ve tested that.

Host:  That’s gender specific or is it the caregiver, the alternate?

Dr. Prigerson:  No, it’s gender specific even for the patient. So, my point is, it’s good to have someone have another set of ears. The challenge is really in having that other set of ears – everyone has – and my mom’s a therapist – everyone has an agenda. So, making sure that the agenda is really on the patient’s behalf and focused on what’s in the patient’s best interest and should the patient – almost do a role play in their mind, what do they think the patient wants and helping them sort of – in psychology we say correct cognitive distortions – help them under – may be the family member needs to also talk with the patient before and after and debrief with them about what they heard and how to align what was said and their priorities with what the patient – what’s in the patient’s best interest and most of what the patient would want and not what the family member wants for the patient.

So, I think a likely common scenario which you could tell me is not common or whatever but is where the family member, the wife is like try – like don’t give up, keep trying or I hear situations where the wife who is not the patient says she doesn’t know but she knows and then the patient will say she doesn’t know, I don’t want her to know what my status is. And when they both probably should be talking to each other to have a better understanding of what they think the patient understands of their prognosis, what their goals of care are. So, they need to sort of calibrate and coordinate that they’re on the same page both before and after they meet with you or any physician so that there’s a better alignment between the patient’s interests and the care being received and the medical decisions being made so that it’s not really being driven by a family’s wish to do something other than what the patient would want.

Host:  So, you highlighted the importance of the fact that anxiety plays a huge role in this and no doubt a doctor visit for a cancer patient is hugely anxious, right. You are getting a treatment, you don’t know what it’s going to be like, you’re not feeling well, you’re getting a test result that you are nervous about, maybe you just fought traffic for three hours to get in, you’re sitting in this waiting room, you are sitting in a cold gown, whatever it is; all this constellation of things makes this a very challenging experience. And I think you emphasized that those factors play into how people are not in a frame of mind where they are going to have a productive discussion. So, other than the obvious things of trying to prepare and try to make yourself as comfortable as you can; any other suggestions that are going to make that easier for people?

Dr. Prigerson:  Yeah. Actually, so we developed these communication interventions, but my research is focused now on two types of interventions. One is enhancing communication and understanding, and the other part is focusing on the emotional piece and how that interferes with optimal understanding and decision making. And so, we have something called our empower intervention which actually works with a family member of patients who can’t communicate. So, the family member in that circumstance is actually the surrogate decision maker.

So, what we do is we start - our intervention is – it sounds I know some people go woo-woo, it’s very psycho babbly or not that sophisticated. But it’s a very simple and effective approach. It’s a grounding exercise. So there have been many, many studies that show that grounding exercises it can – in two minutes we start our empower intervention by deep breathing or some sort of muscle relaxation or ways to just ground and center someone so that they can take a few deep breaths and just try to relax in advance of discussing some pretty high stakes, upsetting details.

Host:  Great. Well we need to wrap up soon. But I want to just ask you one last question and that is obviously your research centers in this area which hopefully means that this problem and these challenges are going to get better as new learnings and research lead to interventions. What is kind of your view of the future? How do you think things will change or what are you most excited about as far as tools that are going to make this better for patients going forward?

Dr. Prigerson:  Right so, actually that’s a great question. Because I just gave a talk to some residents. When I was telling them about our gist communication, they said you know, ten years from now you probably won’t even need these kinds of interventions because medical schools are admitting people with more of a psychosocial focus and more humanistic medical students, there are also courses in training in how to give bad news and communication.

I would like to believe that. That’s so effective and enough. But I’m a little skeptical that that’s going to be enough to really move the needle and help patients truly be understood and communicated as well as they should be. So, I do think there needs to be sort of patient education about how to be an informed consumer and then on the part of what I’m excited about aside from sort of educating family members and oncologists in how to communicate in a more effective way. I feel like the emotional piece – so I’ve been doing studies for decades where remarkably most of the variants, most of the explanation for why someone gets a treatment or doesn’t get a treatment, dies in hospice or hospital or any number of medical decisions are really made for psychological and social reasons about religious conventions or what things that were said or heard or not heard.

And so why does that make me optimistic? Because those are modifiable. Looking at if anxiety interferes with hearing things accurately; let’s target anxiety and effective interventions to reduce that and see whether that improves understanding of for example, test results. So, I see that on the horizon, the appreciation, not discounting as pseudoscience but recognizing the power of social science and the power of psychosocial interventions to improve the delivery and also outcomes of medical care. So, I see it’s a realistic goal and I see it as modifiable and I see it in our future.

Host:  Well thanks very much. This has been a great discussion and I think you’ve given some very important perspectives and insights and suggestions to our audience. I want to invite our audience to please download, subscribe, rate and review CancerCast on Apple Podcasts, Google Play Music or online at www.weillcornell.org. We also encourage you to write to us at cancercast@med.cornell.edu with questions, comments and topics you’d like to see us cover more in depth in the future. That’s it for CancerCast: Conversations About New Developments in Medicine, Cancer Research and Cancer Care. I’m Dr. John Leonard. Thanks for tuning in.