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Person-centered care: Dr. Epstein

Doc Talks

In this panel DocTalk on integrating supportive care into cancer care, PALTOWN Scientific Director Dr. Manju George chats with Dr. Andrew Epstein from MSKCC. Recorded in December, 2023.

Manju George
Hello, everyone. This is Dr. Manju George. Welcome to Doc Talks. We have today with us, Dr. Andrew Epstein. And he’s going to talk to us about patient centered care in colorectal cancer. So before we get started, I’d like to ask Dr. Epstein how he got into this field of supportive care and to take us through a day in clinic for him. Welcome Dr. Epstein.

Dr. Epstein 
Thank you for having me. As was said, I’m a gastrointestinal medical oncologist and I work at Sloan Kettering Cancer Center where I trained as a medical oncologist and even as far back as high school and college, I was always interested in the humanities and psychology and following family members, I thought that medicine might be a good fit for me and particularly oncology because it spanned the bio psycho social spectrum and was able to provide fulfillment and excellent care to patients and families across every every avenue. And I had heard about and witnessed palliative or supportive care during my training as an internist and was amazed at all the relationship building and, treatments that could be given and guidance that can be offered from supportive care specialists, which you’re probably aware of and we can talk about today. So that’s why I wanted to train not only as an oncologist, but as a palliative care physician as well. And why I am a clinician investigator who does research at the intersection of both disciplines and so my average day, when I’m in clinic, which is a couple of days of the week, is that I am working solely as a gastrointestinal medical oncologist with majority of the patients I see having either pancreas or colorectal cancers. And I use the principles that I’ve learned and that I teach as an oncologist from my skill set as an oncologist and as a palliative care physician and I do some time in the hospital as well as a Palliative Care Consultant but primarily I work clinically as a medical oncologist. So that’s my practice.

Manju George
Okay, thank you. We can continue with your talk.

Dr. Epstein
Thank you. So like I said, it’s a pleasure to be here. And this talk that I’m giving is titled integrating supportive care into cancer care. Because I believe that we clinicians who work in health care have a duty to answer a call that is both disease specific because patients deserve the right treatments and diagnostic tests for their disease but they also need to be seen as human beings with the disease which is not a new idea, but is one that we sometimes lose sight of in medicine. So I think that this talk is important to to understand how we can maybe get a better sight of that. I don’t know if you want declarations of interest. I don’t have any things that I see as conflicts. I do review topic reviews on GI cancer as well as palliative care for a reference called up to date which you may be aware of which has clinician as well as patient and family-facing medical information and I lecture on this very topic in some other avenues as well and I sit on some professional bodies, panels that relate to palliative care.

Dr. Epstein
This is the first slide that I’ll show which is an introduction and shows that supportive care which we will use interchangeably with the words palliative care is recommended by professional societies and by us at this hospital and others to be an integral part of any cancer care. So sometimes when people hear supportive care or clinicians, particularly doctors hear supportive care, they may believe that it is separate than the cancer care or the care that any patient is getting for any disease and that’s something that we’re continuing to try to get away from even though we’ve made a lot of progress over the past decades. This shows that cancer care travels alongside with supportive care on any journey whether someone is cured or interested in survivorship phase of the illness or whether someone dies of a cancer and so, as I’ll show in a moment, it is not the same as end of life for hospice care. But before I talk about that, I want to say that the NCCN guidelines with which I think probably most if not all of you are familiar, make some pretty high bar recommendations about palliative care and they say that all cancer patients not just people who have progressive disease or who are dying, all of them should be screened for palliative care needs from the start and as appropriate moving forward. And they say that both patients and families should be informed that palliative care is part of the Comprehensive Cancer Care just like the last slide showed and it’s not only for a certain time or population. And moreover, it’s not just palliative care teams of specialists but the mandate is for palliative care to be initiated by the primary oncology team itself and then augmented if needed, by experts of interdisciplinary teams from palliative care or, or others such as psychiatry or social work. There are many different types of teams that can give excellent palliative care. And they give a mandate for institutions themselves to develop their own processes by which the palliative care should be integrated into cancer care. And so I think that is a high bar but it’s an appropriate bar to be set for clinicians because of the need for anyone, not just patients with progressive disease to have palliative care. So what do we mean when we talk about palliative care? Again, interchangeable with the word supportive care, but this is a recent, I thought nice patient- facing graphic and explanation of what palliative care actually is. And this was in JAMA Internal Medicine recently and it says many things. it says that it’s a specialty of medicine, which it is just like cardiology or oncology or pulmonology and it’s for people with serious illness and I don’t think anyone would disagree that cancer in whatever stage whether it’s stage one or stage four, very likely to be cured or not, I don’t think anyone would say that any cancer is not a serious illness. And so palliative care is a specialty aimed to help patients and families with serious illness, and is sometimes for patients with particular needs. necessary as an additional layer of support by subspecialty experts called the palliative care team but as I show on previous slides, a mandate for the primary oncology teams themselves to deliver this care and they talk about on the slide the different things that it could entail. So it could be the management of symptoms like pain or shortness of breath, or worry or anxiety, depression. It can help with clarifying what the goals of treatment are, which we’ll come to in a moment is something that we often need to do in oncology. And it can help with making decisions which are often very difficult as we all know in oncology or any other serious illness and it’s a team based approach. So a standard palliative care team might have a chaplain, a pharmacist, a nurse, social worker and a doctor. And importantly this slide shows on the left and in the graphic that this is not the same as hospice care. So a lot of people conflate hospice care with palliative care and that’s not true. Hospice Care is a kind of palliative care but there’s much more palliative care that happens before hospice care, which as you may know is hospice care is the care that Medicare covers for patients who are expected to die within six months of a serious illness. So that is a special type of palliative care, and it’s very important and yet that’s not what I’m talking about today. What I’m talking about today is broadly the palliative care that patients deserve to have even when they’re receiving tests and treatments for a serious illness like cancer.

And so this is a cartoon that I often show, which is a cartoon because it’s both completely absurd, and it’s got some kernel of truth as well. And there’s this doctor who’s sitting across the desk of a patient and he says there’s no easy way I can tell you this so I’m sending you to someone who can. And this can pertain for instance, in my practice to if I’m having a hard time to understand why my patient still has a rash or why blood pressure is still high despite me giving blood pressure medicines I may need the help of a dermatologist and a cardiologist, respectively. But as an internist trained I should be able to have at least some skill sets in dermatology, cardiology, cardiology and other aspects of Internal Medicine. The same goes for palliative care where we need to help patients and families through serious illness and so you can’t have an oncologist or their team referring to a palliative care specialist at every single diagnosis of cancer. There needs to be some things that are done. And so it’s absurd to say that we should refer everyone to a palliative care specialist. And yet it’s both with a kernel of truth because sometimes we all need a little bit of help from from others including palliative care, or other psychosocial experts to help with things that are particularly hard or intractable or, remains to be complicated despite our best efforts.

So a really nice piece that was written about 10 years ago in the New England Journal of Medicine was this one by Amy Quill and Tim Abernathy and they were delineating the tenants of the top primary palliative care which is what is really the purview as I’ve been saying of the medical oncology teams and even the surgical and radiation oncology teams also. And then there’s the specialty palliative care shown in the bottom half of the slide, which is really the purview of the consultants, the specialty palliative care teams when things get complicated for things like refractory pain or other symptoms, helping with complex depression or other psychosocial aspects of care that are more complicated, perhaps assisting with conflict resolution between different parties that are involved. And yet on the top again, primary basic palliative care is what I as a medical oncologist need to know how to do to manage pain and other symptoms like knowledge or that my patients might have to help them with their mental concerns and diagnoses like depression and anxiety and to talk about where we are, what this cancer entails, and particularly as I circled there, the goals of treatment that’s something that we often talk about in medicine, particular oncology as, quote, the goals of care. And as I’m going to show here, that’s something which we often think is only medical, but it’s entailing much more than medical things. The writer and the physician that you may know Atul Gawande wrote a book called Being Mortal more than 10 years ago, but almost 10 years ago now who said a couple things in this passage that I thought were worthy of comment here he said, first in medicine and society, we have failed to recognize that people have priorities that they need us to serve besides just living longer. Now that may be true, there may be some patients for whom that is their one and only or at least their highest priority, and we should respect that. But not for everyone. And regardless, Dr. Gawande says second, the best way to learn about those priorities is to ask about them. And I don’t think we do that enough in medicine, particularly in oncology, which is one of the reasons why I was spurred to try to enhance my practice and my research with palliative care. We’ve written about the need to know and feel now and that patients have this double need. They need often and want to know about their illness, but they also have a need and an intrinsic need to feel known as human beings. So we’re going to talk about how the goals of care really need to be built off of both of those things, not just the disease but who the patient is, as well, which again, is the title of this talk.

And this has been written about in other ways as well. This group talked about how collaborative decisions in medical care and balanced medical recommendations themselves are built upon the pillars of not just the medical story. What is the colon cancer? Is there a BRAF mutation? Is there a right sided tumor or a left sided tumor? Is there metastatic disease or not? These are all very important things, but these are the medical aspects and you need to have the patient’s story as well. Who is the person? What is important to them? What are their concerns? What are critical abilities so important without which they couldn’t live? And many other things about the patient? So we’re going to talk about how we get that and these things need to be elicited after there’s a relationship of trust that’s built between patients, their families, and clinicians. And so I want to talk a little bit about the stab that we’ve taken at all this at Sloan Kettering, and this is not the right way to do things. There’s no right way to do things, but this is the way that we’ve tried to answer the call from the NCCN as our own institution to try to answer the call to make sure that patients and families are given palliative care from the very start of cancer care no matter what. And again, it gets a primary supportive care as shown in the bubble on the left. So this is something which we believe all primary medical, surgical and radiation teams need to be able to do and we’ve called this, the Transitions Initiative, recognizing that there’s often many transitions in the cancer care journey such as diagnosis, progression, cure, debility, death, and other transitions and so we have bucketed this into two main buckets, if you will, the one the left we’re going to focus on today the one on the right was not something that we have time to discuss today.

But focusing on communication about transitions, we’ve tried to have a framework by which we can have discussions, documentation and the display for other clinicians about what has been discussed in terms of the patient and the overall goals of care. So I’ll touch a little bit on these. When the pandemic happened, there was a even more than usual urgent need to assess what patient’s goals of care were because on top of the cancer, we had serious illness and sometimes as you know, with the virus, death or at least critical illness such that we needed to assess goals of care urgently. And so we had some clinician facing tools both on iPads and cell phones that clinicians could reference in terms of really high yield questions that you see here that we will talk a little bit more later so that they could perhaps more expeditiously discuss goals of care even though we wish we didn’t have to in the pandemic setting in a more rushed away like that. And otherwise, we also facilitated through a vendor called Vital talk which is kind of the industry leader in communication skills training, opportunities for our oncologists who are already very good, I believe, that communicating about serious illness, additional training to take part in one of two courses. The first one being mastering tough conversations and then another one being a train the trainer model where people could take those skill sets and try to spread them to their services and beyond using skill sets they learned about how to teach these skills and communicating about serious illness. And so there were a couple dozen oncologists who were faculty, half of whom were oncologists, half of the were supportive care clinicians who were interested in elevating their skill sets and communication 12 of whom went on to then become trainers of other clinicians here at Sloan Kettering and this is an initiative which is continuing and this is a screenshot of the zoom that the Vital Talk founder had with a handful of our faculty and it’s broken up into small groups and its role play setting this was very positively rated and thought to be helpful by the faculty. And in addition to training about discussions, we thought it would be necessary for the medical record to be helpful for the clinician to document what had been discussed in goals of care discussions. And so we’ve worked over the years and we’re actually now working again because our medical record is transitioning to Epic, which is a more commonly used medical record in medicine. But with our current and older medical record, we developed this goals of care template for clinicians to be able to document what conversations they had with patients and families about the goals of treatment.

So the goal is pure template as you see here, it gives the clinician options to check a box to indicate what was discussed, such as the expected course of the illness, the intent of the treatment itself, what the patient’s goals were, and even gave an opportunity for a discussion about end of life care, should the patient want to talk about that, it was not mandated or suggested that there should be a discussion about end of life care but that is obviously pertinent if someone is having a progressive cancer and if they will die of cancer. And so the end of life care boxes enable a discussion of what we call code status as well as hospice care specifics. And so in addition to these checkboxes, there could be free text for clinicians to indicate what actually was discussed during the conversation and to summarize. And what we found is this plot showing both on the inpatient and the outpatient side after the institution had supported, during the pandemic, a need for goals of care conversations to happen. And when we were supporting patients with trained clinicians with training and places in the medical record to document it. There was, as you see here, an increase in the numbers of, of goals of care notes that were entered into the medical record, both on the inpatient and the outpatient side. So this shows that the clinicians in busy practice settings can be motivated and moved given the right tools to actually do primary palliative care, as I’ve mentioned this to be one part of, we’ve done some research, including in this paper shown here, that the documentation of these goals of care using the templates that I just showed you by medical oncologists is associated with end of life outcomes. Now, I’m not saying that end of life is the only thing that matters for us to talk about goals of care, and not at all. However, it’s pertinence. And so this study showed that patients who are admitted to our hospital in the last 30 days of their life, among those people, if there was a prior documented end of life discussion using this template, these were people who spent less time at Memorial Hospital and were more likely to be discharged to hospice care. Again, I am not saying that less time in the hospital is better. And I’m not saying that hospice earlier or at all is better. We do know, however, that for many people, these things are preferred and are appropriate. So all I’m saying here is that the actual use of a template and a discussion is associated with these things. And therefore might be relevant to consider when thinking about how places should have their own systems by which these things happen, and about how patients and families might want to talk about what is important to them. Whether that be a focus on comfort, or ongoing hospitalizations and tests and treatments of the cancer, whatever the patient is most prioritizing that is what should be considered by clinicians and their teams. We also worked hard to have a place in the medical record that was not just about blood tests and scans, and the doctors and nurses note, but actually about the patient, him or herself and so we were able to have this somewhat coveted real estate in the medical record called the patient values tab which has multi colors and houses information about who the person is as a human being in addition to the molecular and other specifics of their cancer itself and details everything from communication preferences. On the top left, you know how the person likes to be called how they like to receive information with a lot of detail or less detail some things about their practices and beliefs. It gets to things in the bottom left about illness and treatment understanding what your prognosis questions it’ll show you we’ve experimented with asking patients no matter what some of the nuts and bolts of what we call advanced care planning, like who are the proxies, are there any advanced directives in the system? And in the middle, the goals of care discussions themselves are on the top and the purple. Those are the things that I’ve already showed you. And in the bottom center, I’m going to show you a little bit more. It’s an initiative and ongoing research that we have surrounding what values patients have in terms of what they’re hoping for or what their concerns are, what their critical abilities are. So we’ve worked to have a place for for patients personhood, not just their medical specifics in the medical record.

And we think personhood is important because it shouldn’t need to be argued but I’m going to show you how this has been playing out in the medical literature. This is a New England Journal of Medicine essay by a physician who herself was a patient around the time when she wrote this piece in the New England around five years ago, where she talks about the reality of cancer curve in medical research and as we do something called an ROC curve, which is a curve on the axes like you see there. She took her own take at a ROC curve and called it the reality of cancer. And she posited that there isn’t just things that threaten our lives as cancer patients like the cancer or the treatment with its risks, but there’s also things on the on the x axis on the horizontal axis that threaten our days and the quality of that, like, you know, feeling bad through the complications of cancer treatments. The complications and the worry about the complications of cancer treatments, the anxiety about what’s going to happen, the strain it places on relationship and our work lives, and even with ourselves. And so, this writer said this ROC curve is the Yin to the Omics Yang and when we talk about Omics, we’re often talking about genomics, which are the specifics on a molecular level of the cancer. And she recognizes that it’s very important, but like when the other slide showed, there’s not just the medical aspects, there’s the patient as well. So it’s this Yin and Yang and she says this ROC is the Yin of the omics Yang with precision and personalized medicine. She says we need both, which is what this whole talk is arguing you have to have both and by specifically mapping out the things that threaten our patients days and lives we optimize our sensitivity to the lived reality of their experience, basically allowing patients to live better days in ways that are important to them. And she says the welcome news is that the area of the curve can be manipulated– what threatens the lives may be immutable, but there’s ample opportunities unique to each patient to move the sliders and reclaim the quality of their days. I think Curiosity has a lot to do with this –curiosity on patients and family parts but really a lot on the clinicians part. So I teach some of the clinicians this piece that I read in the New York Times Magazine. Many of you may be familiar with Neil deGrasse Tyson and has nothing to do with medicine. But as you know, he’s a physicist and he had this really interesting answer to a question that was posited to him in an interview and the question was, we don’t always recognize misinformation for what it is. And obviously misinformation is large in the political spectrum these days, but there’s also things as you know about science and even medicine. So, the interviewer says, what other questions should people be asking themselves when they encounter material that’s skeptical about mainstream science? And Tyson says, what’s behind all this? The missing link is curiosity. And so this is what I’m suggesting patients and families come with. If their doctor saying you must do this, well, you might have curiosity, ask them questions why? Or if they see in a community chat group or somewhere else, my doctor said, I should take this, I do this and therefore everyone should do this. You should have some curiosity and say, Well, what is it? And so the interviewee says, What without curiosity, you’re no longer probing for what is true if someone says I saw Bigfoot the other day. There are people who say Yeah, that’s great. And there are people who say, No, you’re full of crap. Both of these responses require no brain work. What is the brain work? I would like to see more of its “Tell me more”. Which I teach is one of the most impactful communication questions that you can have with patients and families. Tell me more. When did you see this? Where do you see it? So when did you find other evidence and you start probing, it’s the absence of curiosity that concerns me. And so this is not pejorative. This is simply saying that I think that we need more dialogue in our society, including in the exam, in hospital rooms between patients, families, and their clinicians. And again, this is not new communication is very important. There was an internist who said that patient communication is the most common procedure any clinician will ever perform. So even if you’re a pathologist or a radiologist, or surgeon, these are very important, medical subspecialties, these people need good communication. A pediatric oncologist who is also a writer once said that talking is our procedure as oncologists. So we need to be good at this. And it’s a little skeptical, but there was a layman who once said The problem with communication is the illusion that it has occurred and that’s because sometimes, there are oncologists and teams who don’t address these non biomedical aspects, despite the fact that patients and families deserve for the biomedical aspects to be addressed and for the psychosocial aspects and their priorities, goals and preferences to be elicited as well. And so patients and families should ask for time about this if that’s important to them to talk about if it’s not already being addressed, and we’ll come back to that.

So one way that we’ve tried to make special space for this to be discussed is as part of what we call the 123 project, which involves, as I’ll show you at the first, second and third follow up visits to talk about three things that we think are important –symptoms, understanding and what we call values. And then the values aspect, which is of most interest to me, we’ve published on discussions that were originally led by oncology practice nurses who are really trusted and know the patients very well about what the values of patients are, and this would be around 10 minutes and it’d be revisited quarterly and then the nurse would, after verifying with the patient what the discussion had entailed, they would then document in the medical record what the discussion had been about and it would populate the values tab showed, that multicolored area of the medical record so again, three things symptoms, understanding of illness and their in their treatment, as well as how much information they want to have when they’re when they’re making decisions and having discussions about their illness. And then finally their values, which happens about quarterly in our research. And so these are the questions that we’ve used with a lot of patients, hundreds to date, that are informed by our research, as well as research of others that you can read about if you want in the references shown in the bottom, but we give them an introduction every single time we do this, so it’s not out of the blue and people don’t get concerned that we’re talking with them about their values. For any specific reason we tell them as shown in the black at top. We do this with everyone regardless of what’s going on with you because I think it’s important to know you better as a person and then these blue questions as things like you see there. First is called the patient dignity question, what do I need to know about you to take care of you as a person? And that can be really appreciated and impactful and these are very highly rated questions in terms of patients and families finding these being helpful, comfortable and recommend it to others. What gives you strength what concerns do you have? What are you hoping for? What else are you hoping for besides that? What abilities are so critical in your life you can’t imagine living without them? And then we give patients an opportunity if they want but we don’t force them to answer to discuss what they would want if they were in a crisis situation like if their heart were to stop where they couldn’t breathe. And we asked them finally if they’ve discussed these things with loved ones because we think that that’s important for those discussions to happen so loved ones can understand what’s happening, what is important as well.

There was a doctor recently this year this is an oncologist in Brooklyn, not at my institution, but he wrote this lovely essay in the JCO, which is the Journal of Clinical Oncology. And he talks about the importance of values elicitation so I found this to support our work, which I thought was very nice. He said we need a conceptual nudge otherwise, if we’re just left stranded at the lowest common denominator of value, which is money, institutions may measure the end in the flow of dollars, but the beginning lies in a generous spirit and awareness and in a way of thinking and acting that places protection of the vulnerable human person and enhancement of the quality of human relationship front and center. This spirit ought to shape both personal relationships and the larger systems that influence relationships. That’s what we’re trying to do at Memorial and beyond is to try to get this part of culture so that it’s not all about more tests, next, patient, keep it going, and a breakdown in communication and an absence of understanding who people are and what’s important to them. Because these questions sometimes, but usually not sometimes, are of sensitive nature and make patients upset even though that doesn’t usually happen. We were trained in training the nurses and what we call the acknowledge normalizing partner framework, which is a variation on other empathy communication skills frameworks that’s been in literature, but this was a really nicely pared down framework for nurses to learn quick tips, if you will, about how to respond to emotion if it arose. Phrases like I’m glad you shared this with me or normalizing it to the notion that many patients feel this way in difficult situations like this and finally partnering with patients which is very supportive that we’re always going to be with you in this no matter what. And so we’ve been pleased with the results we’ve had with our our programs thus far to have discussions and we realized it was so acceptable and it was actually moving the bar in terms of patient rated quality of communication. We are now embarking upon research that would use the patient portal, which I’m sure you’re all aware about is something that patients and families increasingly have access to and increasingly use, to use the portal to actually send patients these questions which is inherently less personal than having a discussion with a nurse one on one but a better way to scale it from hundreds of people to 1000s. And that’s what we’ve been doing and what we’re continuing to research about these things getting sent to patients and families and then it being sent to the clinicians who then are encouraged to have discussions about the answers and then to document it in the medical record. So this is our ongoing research.

And in the last remaining slides, I think I have three or four left I want to touch on some other things that are common at the interface of disease and being human as a patient. One of them is Scanxiety and people here may have experienced this. This is increasingly written about including in this nice review about Scanxiety. And no it shows as we all know that scans are common but they do have risk. They can be a psychological reminder of the diagnosis that happens. A indicator about the uncertainty about what’s going to happen in the future. A focal point for clinicians to need to know what’s going to happen with the disease and the the course of the illness. It can be scary if patients cancers are progressing and what that implies for treatment of treatments needs to be switched. Scan procedures themselves can be unfamiliar, claustrophobia factors into MRIs, a lot of the time it can be uncomfortable, there can be some concerns with radiation exposure or other issues that happen and so scans are not perfect, far from it. And there’s a thing called Scanxiety. And so this is I think one of the most common examples about how things that we oncologists do as tests, can have downsides and so other possible things where the routine blood tests it’s not necessary in my opinion for me to know what the percent eosinophils are on a blood count of someone with colon cancer the very minority of patients with with human disease need to know that level of detail and yeah, that’s common in a complete blood count is some of the things like that and so, you know, routine blood tests themselves can be concerning to patients and sometimes doctors I think can act too much on a tiny off blood test results to tumor markers themselves such as CEA with colon cancer is something that does, in my opinion, have value and it also has downsides for instance, the decimal points. We had, I think 20 or 30 years ago petition the lab to please take out the decimal points because going from 5.1 to 5.2 might upset patients and yet it has a negligible impact on the diagnosis given the noise in the system. And yet we were unsuccessful at having the lab to take those out. And so we often have many conversations about what does it mean to go to from 5.1 to 5.2? Or what does it mean to go from three to five? And it may or may not mean something for the disease and yet it often can be concerning for patients, families and clinicians. And then there’s the liquid biopsies, which is beyond the scope of this talk. But something I’m aware of is increasingly prevalent in colorectal cancer and others. And so, I believe that there are downsides to liquid biopsies. I believe that there is a lot of research that has to continue to come out to prove what we hope to be proved true, which is that they’re helpful in navigating the illness course between patients, families and clinicians. And so I think patients and the clinicians need to work better and work together to navigate the benefits and the burdens of scans and these tests, in my opinion.

How do we use tools to facilitate communication during consultations in cancer care in general, there was a nice review of this a few years ago and there’s many things that have been looked at whether it’s patient reported outcomes. You may as a patient have been part of clinical trials or even common in clinical practice now where you’re asked about common symptoms before your visit with a doctor anywhere from shortness of breath to tiredness to constipation, and the data actually show that this improves quality of life, decreases emergency room visits and increases overall survival. And so this is something which can be very useful if done correctly. There’s other things like question prompt lists, these have been researched in terms of maybe you give patients and families a list of questions that they can use and prompt them and say ask this of the doctor so that you make sure your questions are answered about what is the treatment schedule and what is the side effects and what are the options if we don’t do this treatment and how often do you monitor cancer progress? And you know, these are problems that have been researched. There’s audio recordings, which are increasingly used and with technology is often helpful for patients and families to be able to have recordings so that they can actually listen to the doctor instead of writing things down or if they forget something to go back to it later. Records being in the hands of patients themselves is increasingly prevalent if not law right now and I think very helpful in general. And there’s other things called informational aids like videos or prediction tools to take away the research from this kind of meta analysis with that was that the evidence base is mixed. Some things some tools are likely more helpful for some patients and others and some settings may have them available and some may not. So this is somewhat of a mixed bag but can be very helpful sometimes.

And what is the patient and family role in their in their cancer care? You all probably know this, but I want to have the slide which is my last slide to encourage you as I’ve been saying to think about what’s important to you, as a patient, really think about that and granted, you don’t know the future and you might not and you might not know the ins and outs of a disease especially if it’s a new diagnosis of cancer, but you can think about what’s important to you as a patient and we find that values are enduring even though the “goals of care” might change, depending on what happens in the medical situation. And how much detail do you want to know. Most people want a lot of detail but sometimes we doctors because we have been said to be talkaholics where we’d like to talk talk talk. Sometimes we give information to patients who didn’t want it at all or didn’t want it in that level of detail. And so we ideally should be asking you how much detail you want, but usually we don’t and so you need to know how much detail you want. And you need to interrupt a doctor if they’re giving you too much detail and you need to politely ask for more if you’re given too little. That’s both during an appointment as well as before and after. You have access as we’ve said to a lot of information, both the patient portal results, clinician notes now is part of law. And you should look at those things. If you want and you shouldn’t if you think it’s going to be not helpful for you. You have other resources outside of the clinician patient relationship from support groups and other informational resources. Try to ask yourself, What’s the quality of the informational resources, use that curiosity that Tyson talked about? If the patients in a chat group is saying my doctor does this I recommend it for everyone. Ask why. Ask Is it important and worth it and applicable to you or not? And ask your doctor that what’s the quality as I said. Who should be present during appointments? Some people want to be alone. Most people want someone else there with them. If they can’t be there in person, maybe have them over over by phone by speakerphone and ask the clinic staff to set that up. And that can be really appreciated by the clinician so that everyone can be on the same page. Consider writing down your questions so that you have them at the ready, either during or after a medical consultation. And then finally, family and friends are so important. They are in a hard spot because they don’t know what the patient’s body is telling them. And so I often tell patients listen to your body and I tell the family, listen to their body because they know it best and ask them what they’re feeling. Are they hungry? Are they not? Do they want to go for a walk? Do they not? What’s important to them, in addition to what’s important to the concerned loved one. And so this is held in the talk and I appreciate your time again and I’m happy to take questions if there are any.

Manju George
Thank you very much for the talk. So I think maybe I’ll start by asking about you know how to communicate prognosis information to patients. It comes up in a lot of discussion and call it down because there are a lot of people who are stage four who don’t want to know their prognosis and they’re told that their disease is incurable and when they hear that word incurable, they are thinking that or terminal they think that they will die immediately whereas many of these patients might have not that extensive disease. But this the term is just used to say they’re not stage three or not non metastatic. So what would be something that they can use, how to control this conversation, what to say to the doctors and say I want to know my outcomes but I don’t want you to tell me those terms.

Dr. Epstein
They should say though, that exact words or something like it from the very beginning. If they are feeling like they’re going into a consultation where a serious prognosis is going to be discussed, and the clinician will probably appreciate it. The clinician does. Usually, if not always has an ethical obligation to discuss the situation if not with the patient then with a loved one because if there’s going to be medical care delivered, there has to be some semblance of knowledge from someone whether it’s the patient or the or their family about why is this being done and what is actually expected from this. That is just sound medical care. That being said, there need not and should not be a information dump, as we call it or a hitting over the head with information that patients are A) concerned about hearing and B) might not need to hear now. So that’s what patients and families should say, Just so you know, please. we understand we’re in a healthcare setting and we need to be told things and we understand that. We are concerned about x. So if you could please not say A, B and C that would be helpful. Now, this can be challenging for clinicians and yet that doesn’t. That’s the way it is you know, not every job is easy and when you have the honor to be a physician, and you’re going to be tasked with some hard things and that’s why I try to train the trainees if there’s a concerned and loving family member who stops the oncologist before going into the room of the newly diagnosed stage for colorectal cancer patient and if the if the loved one says before you go into the room Doctor, please don’t tell them that they have cancer or don’t tell them that their prognosis, that can be hard for clinicians, especially clinicians in training who don’t have the many years under their belts to know how to navigate, so I train them and I say you need to know where this was coming from. You need to work with this family in the first place know where it’s coming from is not, this is my adversary, which we don’t have adversaries as patients and families. But sometimes when people are pressured and they’re pressed for time, they might feel annoyed that someone is telling them that they shouldn’t say something which they think usually is the right thing to talk about. So I say remember this is probably a concerned family member. And so you should empathize with that and just like to the “acknowledge, normalize and partner” framework I teach the nurse mnemonic and I teach it to all the trainees and I say you should recognize the the love and concern of that family member and you could say I can see how much you care about them. But you should also inquire you should use that Tyson curiosity, which is the E and nurse which is explore. And you say this help me to understand your concern about them knowing what you’re asking me not to tell them. And then they’ll probably say because I’m concerned it will devastate them or because in my culture, we don’t talk about those things. Or in our culture, we have the information about serious illness and death go to a family member. And then you should say thank you for telling me that. I am obligated to follow what the patient wants to know or not know, let’s go into the room together. And let’s talk about it and you can see that I’m going to do this and respect their autonomy as well as their autonomy to not hear information and so I bring the family member in and then I say to the to the patient, it’s nice to meet you some people want to know all details some people want to know no details. I can speak to their family and there’s people in the middle who want to know the high points of a certain medical illness What about you? And a lot of those patients where your stops before going in the room. A lot of those patients say talk to my loved one I’m fine with you talking to my loved one and that’s okay. So that’s a specific situation about the family member not wanting some information. And then to go back to I think what you’re asking about if the patient doesn’t want the information, that information is garnered and the same way I just told you because here’s why I opened up the encounter with every single new patient I meet no matter what I say. Some patients want everything some patients want nothing. Some patients want the high points What about you everything nothing or some? Usually they say all but sometimes they say nothing. And sometimes they say listen, I know I have stage four cancer, or I know I have cancer. I want to know generally where things are but I don’t want you to go into specifics about prognosis because that might scare me. And I say I respect that. Now oftentimes they don’t say why they don’t want it. It really is the obligation of that clinician to say I respect that. Can you please help me to understand why you don’t want that information? That’s the curiosity that Tyson talks about. Because if we don’t say it, then we don’t know why. And we don’t know if that person is misinformed or if they are informed and they’re just concerned. Like you said, a lot of patients might assume that they have one day to live if they have metastatic colorectal cancer. Even though as we know, some metastatic colorectal cancer is curable and even when it’s not, people can usually live for years. So if the patient says because I assume I’m gonna die tomorrow, you can say actually, that’s not going to happen. Do you still not want to hear and they might say, well, actually good. I’m not gonna die tomorrow. Okay, you can tell them a little bit more. So there’s many ways to do it, but you really have to use those skill sets. And I could speak on and on for this, but that’s the high points.

Manju George 
Okay. Thank you very much. That was a great answer. So we’ll go through some of the questions and then we’ll get back to what other questions I have. Julie asks, there is a gap in data regarding patient QoL (Quality of Life) on treatments, since reported are event centric toxicities for most treatments and limited published PROs (Patient Reported Outcomes). Does Dr. Epstein have suggestions regarding how to fill this gap when assessing patient options versus patient QoL goals?

Dr. Epstein
Ask. Just like Gawande said, people have priorities that they have besides simply living living longer, the best way to find out about them is to ask them. So if the hospital system doesn’t have a PRO system, then or even if they do, you know okay, I see on your 10 Point PROs you have nausea, diarrhea, worry about the future, constipation and tiredness. This is on the current chemotherapy. How is this going for you? Is this a constellation of symptoms that you are okay with living with if it means the cancer treatments working? Or do you feel as if maybe we should lower the treatments doses a little bit in order to try to decrease these quality of life burdens which probably won’t have a decrement on the effectiveness of the treatment which is often the patient concern and have a conversation with a patient about those things. There are some people for whom three days of nausea is not okay. And there’s some people who would be okay with living through all of those constellations of symptoms that I mentioned. So you really have to ask about them. It’s true that there is a dearth of quality of life evidence our our data focuses too much on important things but still too much on overall survival and disease free survival and tumor regression, etc, etc, etc. These are all very important things, but we need more things on the quality of life indices. I think we’ve done a much better job in the last decades of getting more information. And you know, we do know for instance, with metastatic pancreas cancer that the FOLFIRINOX regimen not only helps patients live longer, but it actually helps them feel better. We do have those data. And yet I know, I think that we do have a dearth of quality of life data. I think that the EGFR inhibitors for colorectal cancer can often be with serious if not unacceptable quality of life detriment through the dermatologic manifestations of the disease. And I think that we don’t have data saying that the EGFR inhibitors upfront are better than using them later. So don’t get me started. I agree that there’s a dearth of quality of life of data and we need to generate more of it and before we generate the data we need to ask patients

Manju George
Okay, Julie, if you want to add more, that’s okay. I was kind of wondering if she was talking about general quality of life related to, when they collect these data as part of trials, it’s mostly about the particular treatment that’s being tested. Is that what you were referring to?

Julie Clauer
Yes, yeah, I was I was talking about kind of, you’re deciding between two treatments you haven’t started yet. And, you know, you’re trying to decide which one’s better for you and all you can see is 30% of people had diarrhea, but you have no idea what that means in terms of like, does it mean you’re not able to function for three days? Because that’s important to me, you know, so I love understanding kind of what’s important to the patient but then trying to figure out how to how to dimensionalize the treatments. That’s the thing. That’s a challenge for for patients and also most oncologists, right because they don’t have that data. So any thoughts on how to best bring that to life for people?

Dr. Epstein
Or do you mean they don’t have that data of what that if that patient is going to fall in the 30% who have diarrhea or the 70 who don’t?

Julie Clauer
Or what that means. So for instance, I was on a trial and I had two acute events, you know, grade three events that lasted two days each, they were treated, no big deal, right. But then I had five grade one and two that were prolonged that together were a horrible experience. But in that trial data, right, nobody knows that those reported were by one patient and kind of how it played out in their daily lives. So trying to understand how to bridge that because, you know, we do that in COLONTOWN with people describing their experiences so other people can kind of dimensionalize but it’s all anecdotal. So you know, it’s hard

Dr. Epstein 
You raise a critical point about how a day 1 day of a grade 3 let’s say it was asymptomatic amylase, lipase, elevation, I’m exaggerating, but that’s, you know, I just had to hold treatment for a patient of mine because I said, How do you feel it’s gonna feel fine. I said, Well, you’re amylase and lipase is really elevated. He said, so what? And I said, Well, we have to hold it and and that was nothing to him. And yet there are some people like in your experience, or as other people mentioned, you could have smoldering grade one or grade two nausea for five, six days and that is really really significant. And a detriment to people’s quality of life, and that I think is true, which is one of the limitations on our reporting mechanisms. It doesn’t tell the whole story, I agree completely. And this is just gets back to a well informed patients by the clinicians. You might have what we deemed to be mild, but a symptom that goes on for several days, and then the oncologist need to say, in my experience, that usually doesn’t happen or it does or, so again, the EGFR inhibitor is you might have pimples on your face, that we deemed to be grade 1 meaning “mild” but we know human beings. Not everyone, but a lot of people are sensitive about their social and their outward appearance, and they might say that, that you know, six red dots on their face, which is technically you know, grade one or grade two is unacceptable, because they’re not going to want to live their life like that. And so these have to be discussions with with with patients and families, by the clinicians, and there has to be a decision made thereafter. Sometimes, and this is part of your question. There are treatments there’s a treatment choice, and a treatment might entail something and other treatments might not. And I do this all the time with the esophagus cancer, if we’re talking about, you know, Taxanes versus irinotecan as the next as the next treatment we talked about sometimes there may be more diarrhea with irinotecan, but there’s more chance of hair loss with the Taxanes. Or with colorectal cancer, when there’s progressive colorectal cancer, some agents such as Regorafenib, or TAS 102 often have side effects that should be discussed with the patients. These things need to be discussed and they should have an option to not take those if they don’t want those side effects. Even if it might mean they’re sacrificing a small amount of overall survival benefit with those agents.

Manju George
Thank you, in relation to her question like what can be done to capture like the dimensionality that she was talking about in terms of, you know, grade 3 for one day versus grade 1 for a week or two weeks? I mean, what could be done to get that information in, say clinical trials because, you know, for patients, it’s one thing being able to talk to your doctor because then they will get more granular information but when people are looking at like published data and deciding if a trial is good for them, then seeing just the table of 30% grade 1, or 70% grade 1, it’s hard to decide what do you do?

Dr. Epstein
Yeah, so I think that at least indirectly a lot of that information is going to come out in the more global quality of life scores which are increasingly used. So the fact there’s a cadre of quality of life scales both general as well as, you know, colon or cancer-specific or social specific called FACTs, the FACT scores, functional assessments of cancer therapies or something like that. And I think a lot of these things will come out in that. So even if you have someone who’s got, you know, 10 different side effects, but they’re all grade 1, well, that could still really show itself up in the quality of life scales. So I think that it’ll come out somewhere else. Will there ever be a perfect system? No. And this is where I think it’s really upon the clinicians to be honest with ourselves about what is a Grand Slam success like an NTRK inhibitor and what is to continue with the baseball analogy, maybe a bunt single and not very, very, extremely helpful and with some hardship involved in the land of colorectal cancer or other. And they have to communicate that. The easiest thing an oncologist can do is say that well, technically the next treatment is x. So you know, this is kind of what happens, think about it. And we could do that, let me know, that’s easiest thing for someone to say and it’s the quickest thing. Less easy would be there technically is this option, I have concerns about it because of the relatively large number of side effects that are associated with it. And the relatively small gain in overall survival. I find that only a small subset of my patients find this to be valuable for them. This is what it entails. These are the detriments– what type of person are you and what’s important to you at this time. You know that conversation takes longer and yet that’s what a clinician is, I believe mandated to do and must do. Otherwise we’re just giving drugs and it’s not as helpful or targeted or precise for each patient.

Manju George 
Thank you very much. So we look at the next question because we don’t have too much time left. Jamie asked does a doctor set aside their biases or leave their experience to the side when decisions need to be made about care? How do you handle a doctor that might let their biases influence how the person thinks?

Dr. Epstein
I smile because that’s what so much of this talk is about and that’s what’s so important, which is that we’re all human. We all have biases. And there’s no answer to that question. It’s, there’s no there’s no, there’s no quick answer to that question. It is based on of our humaneness. It is based out of the time pressures that we all have and the fact that it’s easier for me to do something that is towards my bias or just easier. In fact, I will be biased to do something that is quicker and easier for me when in fact the right answer is doing the opposite. And so awareness, having clinicians be so self aware, how do you make a clinician be self aware? Well, that’s hard also, especially in an increasingly topsy turvy world, including an increasingly pressurized medical environment as well. So it’s a societal question. It’s a upbringing question. It’s a parenting question. It is myriad things and it’s extremely important.

Manju George 
Okay, I will go back to what Julie asked. So what I was wondering was that like, in addition to the drug specific quality of life endpoints, maybe if there was a way to include the FACT type questionnaires, then do you think that we will be able to get a more balanced view of the drug specific quality of life and also what is generally affecting the patient’s lives? Is that something that could be done?

Dr. Epstein 
I think it could be done. I think that it’s probably being worked on. It’s not my area of specialty expertise or research looking at quality of life as it relates to specific pharmacologic compounds themselves and yet I know that it is increasingly part of of what’s deemed important by funding bodies like NIH and PCORI which is the Patient Centered Outcome Research Institute. And so I have faith that this is being looked at. I’m concerned that the that we might not be able to do it as quickly as might be helpful for patients because of the factors that drive drug development. And then it just again it goes back to having a team including an oncologist who can be asked questions about what is most likely and what is the most likely thing to happen or it would be best for a patient given the patient’s priorities which the patient really needs to speak up about if not asked.

Manju George
Okay. Thank you very much. The one other question that I have is like for example, with colorectal cancer, this is how I feel like we have very few lines of therapy right we have two good lines and then we have maybe now this Lonsurf, Bev then maybe fruquintinib. We have very limited lines, but when a patient starts the treatments there, many of them are not told what’s the landscape of the whole treatment scenario that’s available, right? And like I mean, maybe you don’t have to go to the granular like yes, you will get this much, this many months to this many months on first line and this many to this many in the second line– not that much, but at least to be told that there are a limited set of things that can be done. Because what we find is that when we ask patients to think about clinical trials, they give us the answer that Oh, their care team said you have plenty of options so you don’t need to think about it now. And then they don’t think about it and by the time they are told okay you have gone through all lines. Now you have to look at clinical trials and they are at what we call the “oh shit moment” where they have not prepared for it. So what can you advise patients how to have this conversation you know, they don’t they don’t want to know that they will only live till five years upfront right but how to convey this information in a way that is more realistic but without scaring people.

Dr. Epstein
So patients if the oncologist is not giving them information and they want it to patient should say to the oncologist, I’m not asking you to predict the future or to tell me how long I have to live. I am asking you if you could just spend one minute telling me generally what the landscape is in terms of the approximate number of treatment lines, approximately how long each line might work for on average, not holding you to anything and they should say that if they want to know that. Because you’re right the rug is pulled out from under people and they do have the oh shit moments which is not fair to patients. It is not intentional by doctors but it is part of that bias where and I say it sometimes also there are options. There’s several options. What does several mean? Several can mean two and three, like you said, or can mean dozens and as you say we don’t have dozens of viable treatment options in metastatic colorectal cancer. And so, you know, oncologists should be saying we hope for the best that you have a relatively indolent disease biology and that we will be able to use several and have benefits and we prepare for the worst in case we’re not even able to use them all. And we need to do recognize that usually, we just don’t have as much time on each one and that there aren’t as many as we hoped. But we do hope that we will have a relative goodness for you, help me to understand what relative goodness for you means etc, etc. So I tried to use the hope for the best and prepare no matter what state statements so that the preparing no matter what or so called preparing for the worst, is something that can plant the seed for lack of a better term in the mind of a patient and family members not to scare them and not to be a Debbie Downer, but to let them know that unfortunately, there’s limitations with an incurable cancer like many metastatic colorectal cancers, and we’re going to support you and do the best we can and hope that we have a typically good outcome. And we’re going to be a team no matter what including if we don’t get what we hope for and so I plant that seed and my patients do have the oshit moments sometimes but I can’t quantify this but it just it feels like not as often as, maybe when I did less well in the past or I don’t know I can’t really compare myself to others, but I agree with you completely. There needs to be some discussion if patients wanted of what generally happens and what the what the expectations for landscape treatment is.

Manju George
Okay. Thank you so much. We have gone past the hour. Thank you so much. This was very informative. And so we will have the video edited and then the transcripts and it will be posted on Colontown University. So thanks again for doing this with us.

Dr. Epstein
Thank you for having me. Have a good day. You too.

Manju George
Thank you. Thanks everyone. Bye

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