Prognostication or prophecy: Dr. Briscoe (2022)

Speaker 1 0:00
Hello, everyone. I’m Manju George, the Scientific Director atPaltown Development Foundation, the nonprofit that supports Colontown. Today we have with us, Dr. Joshua Biscoe. He’s an Assistant Professor of Medicine and an Assistant Professor of Psychiatry and Behavioral Sciences at Duke University Medical Center. He completed his MD from West Virginia University and then residency in internal medicine and psychiatry, from Duke University School of Medicine, and then finished a hospice and palliative medicine fellowship from the same place. So I met Dr. Briscoe on Twitter and he has this really interesting “Family Meeting Notes”. It was the first time that I had read something about prognosis and goals of care and all of that. And then we got talking, and so I’m really glad to have Dr. Briscoe with us. So thank you very much. And welcome to DocTalks.

Dr. Joshua Briscoe 1:02
All right, thank you all. Thanks for having me. This is wonderful. I love talking about this sort of thing. I’ve set aside some time to talk about these topics and then hopefully, we can have some time for questions or conversation at the end. So no financial disclosures. The opinions I’m going to express are mine. They don’t reflect my employer. And if you have questions about your particular health needs, I recommend you take them to your individual doctor who knows you best. Alright, so we’re gonna be talking about what is palliative care. I am a palliative care doctor. And oftentimes when folks are thinking about the future with their health and serious illness, like colon cancer, palliative care is talked about either being provided by your primary clinician or oncologist or by a specialist, like a palliative care doctor like I am. So what is palliative care? What are the goals of care, which is relevant to talking about your future health care needs? And then how can we think better about prognosis– what is prognosis? This is a video from an organization called Get Palliative Care and it is just a really wonderful summary of what we do every day in palliative care. So I thought I’d share it with y’all today (LINK: Palliative Care: YOU are a bridge https://www.youtube.com/watch?v=lDHhg76tMHc)

VIDEO TRANSCRIPTION 2:18
(VIDEO TRANSCRIPTION) You are a bridge. It’s true, or at least it’s a good analogy. When you’re healthy, when the bridge is sound, you can handle anything, cars, trucks, trains, all the bumps of life, no problem. You are set. But if you’re facing a serious health issue, something like kidney disease, lung disease or cancer, the bridge starts to falter. cracks appear and pretty soon it’s hard to withstand all that traffic. Traffic that includes your own medical treatment. And that’s where palliative care comes in. Palliative care is a specialized form of medical care specifically designed for people with serious illnesses. Its main goal is to improve your quality of life by providing relief from the symptoms, pain and stress that are an inevitable byproduct of both the disease and the medical intervention. In short, palliative care provides support for your bridge. And when a bridge is in trouble, there is nothing better. Now, palliative care, just like construction, is a team effort. It takes doctors, nurses, social workers, and other specialists, all working together with your physician to realize that extra layer, the layer that can make all the difference. It’s a treatment method that makes sense at any stage of life and at any stage of an illness because it’s never too late to lessen the burden. So next time someone you care about is facing a serious illness, remember this bridge analogy and be sure to consider the enormous potential of palliative care.

Dr. Joshua Briscoe 3:59
All right, so in summary, what I tell folks is as a palliative care doctor, I do two big things to help folks with anything that bothers them like symptoms, pain, nausea, sleep, anxiety, and I’m here to help folks going through tough times and support patients and their families in making hard decisions about their health care, which involves talking about prognosis too. It’s different, so some folks might think palliative care and something called hospice are the same. Oftentimes palliative care doctors are also hospice doctors. They are not the same. Hospice is a type of palliative care offered to folks at the end of their lives. Palliative care, as the video said, and as we practice, palliative care is a form of medical care offered to anybody at any stage of illness, regardless of their prognosis. And so it’s different, very different than hospice care.

Dr. Joshua Briscoe 4:48
Relevant to the discussion about prognosis and thinking about the future in your healthcare is thinking about the goals of care. And this is jargon that clinician use when they’re talking about how to care for patients, they wonder what a patient’s goals of care are. And it’s a nebulous term. And it means different things to different people. I find this framework helpful because it’s objective and it’s simple, and it’s relevant, and it’s real. And so we use healthcare for three big things. These are the only three things we really use healthcare for. And this is everything from diabetes, to cancer, to arthritis, to depression, everything. We use health care to help us live longer. We use it to help us be more functional, do the things we enjoy doing, whether it be playing basketball, or eating pizza, or getting to an important event, like a wedding or graduation. And we use it to help us be comfortable like taking Tylenol for a headache, or medicine for cancer related pain. And when you’re healthy, you got all that, you don’t have to worry about it, you spend little time thinking about medical care. You might not engage with the medical system at all. However, when you get really sick with something serious like cancer, you have to prioritize what you want out of your health care. Because every decision you make about your health care will come with a trade off. That’s just the nature of the beast. Medicines have side effects. interventions like surgeries have risks, being in the hospital has burdens and benefits. And so it’s important to know what you prioritize among these three goals, not saying you would forsake the other two goals. But it’s important to know what you prioritize so that your doctors can make recommendations that have the best chance of helping you pursue that goal. And you can see how this ties into prognosis and thinking about the future because your goal might change depending on what your healthcare team thinks the future looks like. And these goals are fluid. And sometimes you prioritize one goal, or with a close second, sometimes you’re really just emphasizing one goal and neglecting the other two entirely. And we’re going to talk about some different cases that will highlight these three goals. So these are the questions you should be asking yourself, and you should be in dialogue with your healthcare team about when you’re thinking about goals of care. What goal are you wanting to prioritize? What are you willing to trade off? And would there be a time or a situation or event when you’d want to change goals. So I’m going to talk about some different fictional people that will highlight what I mean here. So these people are fictional, totally made up, not real patients.

Dr. Joshua Briscoe 7:39
This is Frank. Frank’s a 68 year old guy with diabetes who’s diagnosed with colon cancer that spread throughout his body, including to his bones and his brain. In discussing what his hopes are for his health with its healthcare team, he emphasizes he wants to work as hard as he can to live as long as possible. He’s willing to trade off a lot. It’s okay with him if he’s sustained on machines in the hospital away from his family and meaningful activities and facing significant symptoms, like pain, as long as he’s alive. That’s Frank’s goal of care and choice, but it’s very clear what he’s prioritizing and what he’s willing to trade off.

Dr. Joshua Briscoe 8:19
This is Sandra. Sandra is a 46 year old woman with three adult children and one grandchild. She loves spending time with her family and cooking with them. She has colon cancer that spread throughout her abdomen which causes a bowel obstruction, which can be very painful, and really limit your function. In talking with her healthcare team, she emphasizes that she wants to work as hard as she can to regain and preserve her function so she can get back to cooking and eating with her family. She recognizes this is going to take work, surgery, and the therapy program might be uncomfortable. She’s willing to trade off some symptoms for getting stronger. However, if she gets sicker and can’t recover, she wouldn’t want to endure the burden of additional life sustaining therapies like a ventilator. So you see Sandra’s priority, what she’s willing to trade off and the limits she sets on when she might want to change gears and change goals.

Dr. Joshua Briscoe 9:16
And then you have Walter. Walter is a 52 year old man with advanced colon cancer that has spread throughout his entire body. He’s got significant nausea and pain and struggles to eat. His doctors tell him that further treatment of his cancer may be more harmful than helpful. He emphasizes he wants to work as hard as he can to be as comfortable as possible. He wants to be able to stay out of the hospital if it’s not going to help him be comfortable. And he’s willing to even trade off being sleepier, as long as his pain is better managed. And so again, seeing what Walter prioritizes, what he’s willing to trade off and if there any limits on what his goal is.

Dr. Joshua Briscoe 10:00
So again, these are the goals of care. When you’re thinking about what you’re hoping to get out of your healthcare, it’s important to know what you’re prioritizing and what you’re willing to trade off. Sometimes it’s a given, you get an abscessed tooth, and of course, you’re gonna want the tooth pulled, so you don’t get a major infection and die. Clearly, the goal being prioritized is longevity, and you’re willing to trade off a little bit of pain, having your tooth pulled, as long as you live through the infection. Other times, it’s less clear, the future is uncertain. And there are multiple paths going forward and multiple options regarding treatment and different therapies. And you might have more than one health issue going on beyond just cancer, you might have multiple health issues. And you might be already frail and hurting from a lot of effects, both from diseases and from the treatment. And so it’s really important to think through with you and your family and your healthcare team, to discern what are you prioritizing at any one time? What are you willing to trade off? And what are the limits upon which you would think about shifting goals? Are there certain timelines? Are there certain symptoms or experiences that you might say, you know what, this path isn’t working, I’m going to change to a different path.

Dr. Joshua Briscoe 11:20
And all that’s relevant when you talk about the future. And prognosis is a difficult, difficult thing. Because, as I tell my patients, only one person knows the future, and it’s not me. And any doctor who claims to predict the future perfectly, is probably incorrect. We’re pretty good at predicting short timescales. So if I’m looking at somebody, and something’s going wrong with them, and I predict something might happen in the next five minutes, I’m more accurate than if I say something’s going to happen in the next five years. All that to say, it’s not set in stone what we say. And so I always tell my patients that I can tell you, having cared for a lot of folks in your shoes, what the future might hold. But I’ve been wrong on both ends. Sometimes things are better than expected. Sometimes things are worse. Sometimes things go more slowly, sometimes they do more quickly. And so it’s important to have an idea of what the future might hold both for you and the needs of your family. And we’ll talk about that in a little bit. And at the same time, it’s also important to think about those goals of care because in the face of uncertainty, and no guarantees, what is the thing you’re wanting to prioritize? Again, anchoring yourself back on those goals of care. When I think about prognosis, I also think about hope, and clinicians and patients, everybody often talks about hope in the context of thinking about the future, particularly in the context of serious illness like advanced cancer, because they often are concerned about giving hope or taking away hope, squandering hope. And so how do we think about hope in regards the future? There’s a pediatric palliative care doc. His name is Chris Feudtner and he wrote really beautifully about the nature of hope. And I’ll just read for you an excerpt from a paper he wrote about hope. And so this is Chris Feudtner writing about hope.

Dr. Joshua Briscoe 13:25
“Hope is like water, existing in different states, exhibiting different properties. In the solid form hope is manifest as specific hopes. I hope for this, I hope for that. In these concrete forms, solidified hope can become firm and fixed, for better or for worse. Dogged determination aimed at achieving a fixed hope is a very good characteristic – that is, until the continued pursuit of this specific solid hope becomes foolish, harmful or unwise. At the other end of the spectrum, in the gaseous form, hope is amorphous, a glowing feeling that one has to tune into to detect, akin to optimism. In between these two states, hope is liquid. Flowing. Assuming the shape of whatever holds it. Carving, eroding, even dissolving solid objects. The ultimate change agent. When we talk about hope, though, we often don’t take care to note what form of hope we’re talking about, much to the detriment of hope in our lives.”

Dr. Joshua Briscoe 14:38
And so Chris goes on to elaborate on what hope looks like in the clinical encounter, particularly amid serious illness and what liquid hope looks like and the dangers and benefits of both solid hopes and gaseous hopes. And this is a part of my work that I deal with every day with my patients who hope for very concrete things. That a treatment is going to yield a particular benefit, or an intervention is going to have a particular result. And when that doesn’t work, people get really disoriented and bereft of hope. In the absence of that concrete hope, it seems like all hope fades away, they become hopeless. And what Chris encourages us to think about is, in addition to concrete hopes, and even this gaseous amorphous hope of optimism, we think about the liquid form of hope that can change and flow given the circumstance. Again, that draws us back to the goals of care. Is this helping me pursue this goal? Maybe it didn’t work on this specific intervention, maybe it didn’t yield this specific outcome. But is it still worth pursuing this specific goal? What am I hoping for in pursuing this specific goal? And framing your hope in the context of those goals of care can be helpful in not anchoring yourself too deeply in concrete hopes and feeling like everything is lost when something goes awry, or also not having such a gaseous amorphous hope that can become unmoored from reality.

Dr. Joshua Briscoe 16:18
Alright, so that’s how I think about hope as it relates to prognosis, but how do I actually think about prognosis in the future? So when I talk to some of my patients and ask them, you know, have folks talked to you about what to expect out of the future? I get a couple of different responses. One is nobody’s talked to me about it. Another is Oh, yeah, you know, they told me I have such and such time. I have years, I have months, weeks, you know, they give me a timeline. I say did they say anything beyond that, and oftentimes, no. To the extent that we can predict a timeline, it is important for many people to know the timeframe. You will probably live your life differently if you think you have years left to live than if you think you have weeks left to live. That’s a classic little game we play as kids, if you only had 24 hours to live, what would you do? And I’m sure that’s different than how you’re living your life right now. Maybe it’s not, I don’t know. You know, the fact that of the matter is all we have is today anyway, any of us could go at any minute. But to the extent that time is important, it’s important to talk about and think about that. And at the same time, it’s only a piece of the picture when you’re talking about the future. And so it’s important to know if you have years left, but what are those years going to look like? What are those years going to look like? Because that surely will influence the decisions you make about your healthcare and other parts of your life? And how you frame your goals of care. And so a holistic prognosis not only includes time, but it also includes expectations about what’s going to happen to your symptoms? Is pain going to get better or worse? Is it going to go away entirely? Is it going to move? Are you going to develop a different symptom like nausea, shortness of breath, or confusion, trouble sleeping? These sorts of things. And also function? Are you going to regain a function that you’ve lost? For Sandra, who has a bowel obstruction, is she going to regain the capacity to eat and have normal bowel function? Of course that impinges upon the time she might have, but it also impinges upon her functioning and she wants to get back to eating with her family, is that going to be possible? Or is that gonna have to be modified in some way? Are you going to regain a function? Are you going to lose function? And this matters a great deal, particularly to family members who are, by and large, in the United States, the primary caregivers for folks with serious illness. There are paid caregivers. There are agencies that can come in and provide support. But by and large, the vast majority of care provided to folks with serious illness is unpaid, by family members. And so it’s important, even if you as a patient don’t want to talk about the future, you’re not ready to talk about that quite yet, it might be important for your family, your loved one, your healthcare power of attorney,, to have some idea of what to expect in the weeks and months and years ahead regarding your function because they need to plan for it too. This doesn’t just affect individual patients. All of this affects families and the community around you. But perhaps function is the one that matters the most to the community around you because they’re the ones that are going to have to make plans in their own lives about how to care for you. Can they care for you at all? Perhaps they have their own health needs and that impacts where actually you can live. Maybe you need to go somewhere else and live in an assisted living or nursing facility. So all of these things matter. And so when I offer folks my best estimate of what the future might hold, I rely on this framework, a holistic prognosis to understand time, what time folks might have, what symptoms they might experience or symptoms that might go away, and how we manage those symptoms if they come up, and then function, the expectation around preserving, regaining and losing different functions, and individualize the patient’s needs. Because there are a lot of different things that can go wrong and have gone wrong with the body and we might expect to come back or not. So that’s a holistic prognosis. But how I situate that and the tools I want to put in your toolbox are related to this framework, which is called the best case/worst case scenario.

Dr. Joshua Briscoe 20:55
And so this is a fictional scenario from an academic journal. And I don’t even really remember the case they were specifically discussing in the journal. But what I would hope patients do and what I counsel my patients do when they’re talking with their other doctors, because I’m a palliative care doctor, I’m not a surgeon, not a cancer doctor. I’m not a neurologist, not a pulmonary doctor, I’m not a cardiologist. And so these patients are going to go and talk to the experts that are managing these other illnesses and what I hope they will ask are a series of questions I’ll go over in a little bit after I explained to you this framework. So these clinicians are actually vascular surgeons out of the University of Wisconsin developed this framework of thinking about the future and serious illness. And they ran some trials and got some good outcomes looking at describing different situations that might come down one path versus another path. So the best case scenario going down the surgery path is x. The worst case scenario going down the surgery path is y, the most likely case scenario is z. And then they do the same thing for the path without surgery. And you can compare, and you can read on the boxes here sort of what this particular fictional doctor thought about this particular fictional patient. And the different best and worst and most likely case scenarios in this case. And so what I would hope for you all, is that when you go and a doctor’s proposing something, whether it be an intervention, a surgery, a medication, anything, and you’re trying to weigh the pros and cons, doctors are tempted to rely on numbers and their trials, you know, there’s a 20% chance of this happening, a 50% chance of that happening. And the numbers can sometimes be helpful, particularly if there’s like a 0% chance of something happening or 100% chance of something happening. But as I mentioned before, we’re not perfect. And it’s very, very, very hard to say at those extremes. So usually, we might say 1% or 99%. It’s hard to find a doctor that says 0%, and 100%. So when you go and talk with them, and you’re trying to sort this out and figure out how it factors into your goals of care, and how it’s going to influence, this is actually going to help. You can say doc, you know, you’re proposing this new chemotherapy or immunotherapy, or whatever the case may be, what do you think is going to be the best case scenario with this? And what do you think is gonna be the worst case scenario if we do this? And what do you think is gonna be the most likely case scenario? And that I find is so helpful, because it takes everything the doctor knows, both from their knowledge of the evidence and research studies and all of that, and their clinical experience and puts it into a story tailored to your needs. Your individual needs. They know you best. They know all your lab work, all your scans, your function, your family, everything. And they’ll tell you, well, this is the best case, worst case, most likely case. And you say okay, doc, what if I didn’t do the immunotherapy? What if I did this other treatment? Or I didn’t do anything at all? What do you think would be the best case scenario? Worst case scenario? Most likely case scenario? And then you can think about that. And think about, of these most likely case scenarios, is this actually good enough for me? Is this going to help me meaningfully pursue the goal I’ve prioritized or not? And you can have a conversation about that with your family and with your healthcare team. I think that’s the most helpful way to integrate this holistic prognosis with the goals of care. Finally, and I’ll end with this just because I wanted to leave time for conversation and questions, but sometimes, it becomes so medicalized thinking about prognosis, you know, what does the future hold? And the future for somebody with serious illness often includes a lot of healthcare. It includes a lot of hospitalization, clinic appointments, pharmacy, waiting lines, waiting rooms, medication management, functional adaptations at home, and all these sorts of things. And that’s all important. And it’s important to talk about and address. And at the same time, that’s not what we’re living for. We’re living for better things. And that’s not ideally what we use our health for, right? I don’t hope to regain health so that I can get to my doctor’s appointments on time. I want health so that I can enjoy my life and do things that are important.

Dr. Joshua Briscoe 25:29
And so this author, he’s a palliative care doctor, Ira Byock, wrote this book, and it’s a collection of stories from his practice as a palliative care doc over decades. And out of these stories, he distills what he calls are the four things that matter most. And so people come to him in times of dire straits, and they ask him, my loved one is sick, or I’m sick, what are we supposed to talk about? What are we supposed to do? And what he recommends, in addition to conversations around prognosis, and healthcare use, and all of that, is talking about the four things that matter most. And these are conversations that includes saying, I love you, thank you, I’m sorry, and I forgive you. And of course, those are big buckets that include, big conversations about big relationship issues. And when I think about it those are things that we should be doing even if we don’t have a serious illness, even if we’re not at the end of our lives. Those are the conversations that make life so wonderful and meaningful. You know, who do you love? What are you grateful for? What are you turning away from that you’re sorry about? And who are you reaching out to that has wronged you? That’s some of the most important things we do in life. And so I’d encourage you all to think about that, that being with serious illness and being in the healthcare system for a long time, it’s easy to get into healthcare mode of thinking, and think that when you’re talking about prognosis in the future, the only relevant things to think about are healthcare things. And that’s certainly the trap that doctors fall into, certainly. But I want to broaden the scope and think about these other important things and think about even important things beyond that, work and play, relationships, of course, like Ira Byock talks about, you know, faith commitments or commitments to worldviews, and philosophies, and communities and all of these, going beyond that. And so, as you think about the future, and prognosis, goals of care, and all these sorts of things, all these things matter. It’s easy to lose sight of them when you’re hurting, when things are hard, and still, they matter a great deal. And so I’m always trying to, in the midst of these difficult conversations, reorient folks back to the things that matter most and use that as a thumbnail sketch for me. If we’re losing sight of those meaningful things for somebody, then as a healthcare team, we’re doing something wrong, we should be helping folks to get back on track towards the things that help their lives matters so much to them. So with that I want to leave time for conversation and questions and any thoughts folks might have?

Manju George 28:29
Okay. Thank you very much. That was great. So maybe I start with, I want to divide colorectal cancer patient experiences and do like early stage versus late stage. So let’s talk about early stage, you know, we find people who are diagnosed, who are living their normal life, and now that CRC incidence is increasing in young people, out of the blue, they get a diagnosis, and then their life stops, right? And then people get really panicky, and they’re looking up prognosis and seeing numbers and being really worried. So what advice do you have for them, like what can early stage patients do regarding prognosis?

Dr. Joshua Briscoe 29:08
Yeah. So I would say, first of all, I would feel the exact same way. I mean, it is scary. You know, being a doctor who sees folks with cancer all the time, across the spectrum of illness, and seeing the different outcomes for good even, it would still be scary and the word cancer is still carries the weight of that, even though we can do wonderful, wonderful things, particularly in early stage cancer, and even in metastatic colon cancer that’s only metastasized to like one spot. And so, you know, we can do some pretty amazing things in the treatment of colon cancer. There’s an author, a palliative care social worker, who wrote a book called Die Wise and he’s like kind of a curmudgeonly guy. The book is not for the faint of heart, but one of the points he makes is when people go into cancer treatment, whether you’re early stage colon cancer, late stage, whatever treatment you might be going into or for any disease really, and you get treatment, the treatment is hopefully going to help you survive. That’s often the goal for early stage cancer detection and treatment. And so you get more time. But what people don’t realize, with more time comes more dying. And what we mean is that you’re still going to live in the shadow of your own mortality. I mean whether you have 20 more days or 20 more years or 50 more years? You’re not going to live forever. And so what can you learn about yourself, about your relationships, about the world around you, that now that you’ve been stricken with this, you weren’t able to learn before, and maybe chances are good that you’ll get treated and be able to live a vital life thereafter with early cancer detection and treatment. And still, it’s going to catch up to you, even if it’s going to be 50 years later. And again, I’d feel the same way. This is me speaking as a doctor and not as a patient. But so often, we lose our heads, everything goes blank, and we don’t try and learn about what’s happened to us and what’s happened to our bodies. At the same time, there is a growing population of folks that are learning and sharing their insights about experiences with advanced cancer. A particular person by the name of Kate Bowler, a Duke Professor who was diagnosed with metastatic colon cancer at the age of 35, with a young child, young family, early career, and now she has metastatic colon cancer, and she’s written extensively about her experiences with her Christian faith, and her experiences with colon cancer and being a professor at a high powered academic center. And so there are perhaps more people today writing about their experiences of illness than perhaps ever before, very wonderfully and articulately. And so I would encourage folks also to delve into that literature to see what other people are saying and thinking about in regards to what’s happening to them right now and what they’re expecting out of the future.

Manju George 32:26
Okay, so what I hear you say is focus on what is important in life for you, right? And reorient yourself to that is what you’re saying. Okay, I have a question from Terry. She asks, Do most cancer centers have a palliative care team available on site?

Dr. Joshua Briscoe 32:42
So I would say if it’s a standalone Cancer Center in the United States, yes, most of them have some kind of specialist palliative care. Now the extent of that palliative care varies immensely. So some cancer centers have one palliative care doctor or an internist or a geriatrician who sort of chose to specialize in palliative care, but might not necessarily be Board Certified. And other centers have teams of multiple doctors, nurse practitioners, psychologists, social workers, medical family therapists, that offer support for patients. I would encourage you, regardless of where you are, if you feel like palliative care sounds like a service you’d want, to ask about it from your oncologist. And even if it’s not offered at the center where you are, you might be able to get a referral out in the community or the town where you live.

Manju George 33:38
Okay. Thank you. And this would be another question. Like what you mentioned in your talk, most people associate palliative care with hospice care, right? And they shy away from asking for pain relief or just support. So what are some landmarks or signs in their cancer journey that can make people think about palliative care? What is your experience?

Dr. Joshua Briscoe 34:07
Yes. So a couple of things. So of course, you know, let’s say you develop a symptom of some kind like pain, or constipation or nausea, and you talk to your doctor about it, and your doctor says, okay, well, we’ll try these medicines, and you try them and they’re not great. Maybe they have side effects. Maybe they make you sleepy, you know, some nausea medicines make you more constipated and now you have to take more laxative. And so you get in this cycle, and you’re like, yeah, this is really complicated. And you go to talk to your cancer doctor, and of course, you’re talking to your cancer doctor about the cancer and that sort of crowds out conversation around these other symptoms. And so if you find yourself getting into that kind of bind, it would be worthwhile to see a palliative care clinician who can talk to you and focus in on what is the things bothering you the most. Is it constipation? Let’s spend a whole visit talking about constipation tips and tricks, medicines, and nonpharmacologic interventions like diet, exercise, other interventions that can help with constipation and zero in on that. And that can be really, really helpful for folks, and particularly in the COVID era, it is more accessible than ever before with telephone visits, video visits, access via secure messaging online, all these sorts of things are often available in major cancer centers. So that’s one, so a symptom of some kind. And it’s goes beyond just pain, nausea, constipation, it could be sleep, it could be anxiety, it could be sexual dysfunction. It could be just general dysfunction, weakness, just having trouble keeping up with the things that either matter most to you and mean most to you or the basics like getting dressed, bathing, toileting, those sorts of things. You’re like, man, I’m just really struggling here. Seeing a palliative care doctor can be really helpful. I think also, if you are having questions about, you’re just getting really disoriented about the paths going forward, and how to think about your overall healthcare. I mean there’s a lot going on here, they’re talking about a lot of different treatments and I’m just getting kind of disoriented about how to sort out decision making among all of this, talking to a palliative care doctor can be very helpful. It can also be very helpful when you’re thinking about the future, like this talk we just talked about. When you are think about the future, and you’re like, the future is so uncertain. So many different things could happen. I don’t know how to think about what I should expect out of the future, and what kinds of decisions I should make, and contingency planning. You know, if this happens, should I do this?. And we call that advanced care planning, advanced care planning, and oftentimes we’re doing that with like making living wills, or appointing health care power of attorneys, it’s helpful to talk to a palliative care doctor. And then it’s also helpful to talk to a palliative crse doctor if, maybe myself as the patient, I’m doing, okay, I need some help at home, but the person who’s living with me, my primary caregiver, is just, it’s really hard to care for somebody who’s seriously ill. That doesn’t mean that person is a burden. I have plenty of people who say, I don’t want to be a burden, or I am a burden, I’m worried about being a burden and to the extent that I can, I try and encourage folks not to think of themselves that way. Their illness is a burden, your colon cancer is a burden. And you need help bearing that burden. You are not a burden. Your illness is a burden. And so caregivers come alongside you and help bear that burden. But sometimes it becomes too great even for the both of you, or even for the whole family. And in that situation, it’s also helpful to talk to a palliative care doctor to support not only you as the patient, but the whole team. And then also it’s helpful to talk to a palliative care doctor if there’s multiple teams involved, you have a medical oncologist, a radiation oncologist, a surgical oncologist, you might have other doctors related to your other health issues and your primary care doctor might be keeping up with your blood pressure and your diabetes, but you need somebody to coordinate care for the serious illness. And a palliative care doctor is really good for that as well.

Manju George 38:02
Okay, Thank you very much. So I have a question from Elizabeth. Can you give any advice on how to try to persuade a patient to speak to a palliative care doctor?

Dr. Joshua Briscoe 38:12
Yeah, so, one thing I like to say is I’m not in the business of twisting arms. And obviously, I see a biased population. I only see the people who have already been referred to me. However, to the extent that my colleagues have come to me and said, you know what, so and so, I think it would be really good for them to see you, but they’re just not ready yet. And so what I would say is frame the offer of palliative care in just the way I’ve been talking about it. That palliative care is there to help support folks going through hard times, helping with symptoms, and I see Mr. Smith, you know, you got a lot of pain and I think a palliative care doctor can really help with that, or you got a lot of XYZ and a palliative care doctor could really help with that. And also help your whole family. You know, we are that layer of support there to help the whole team. And then I think if the question comes up being very clear in differentiating it from hospice, because it is different. Hospice being a service provided for folks to provide comfort focused care at the end of their lives, and palliative care being a service appropriate for anybody with serious illness across the spectrum of their illness. I think also providing them with information and space to think about it. So it’s not like okay, we got to make this referral today. But you know what, here’s this pamphlet, here’s this video, here’s this website. Look at it, think about it. Tell me what you think.

Speaker 1 39:33
Okay, thank you very much. I was wondering if you could share a link to that YouTube video, The Bridge? The patient is the bridge?

Dr. Joshua Briscoe 39:43
Yep, I will put it in the put in the chat here.

Manju George 39:45
Yeah. And also the the article by the pediatrician?

Dr. Joshua Briscoe 39:50
Yep. I can do that as well.

Manju George 39:51
Yeah. That would be great to share as well. So this is a question from Julie. So she asked, when looking at clinical trials and future treatments, the goals are really only longevity focused when that’s only one of the three patient goals and looking at the highest tolerable doses. Any thoughts on how these assessments might become more holistic for best care for patients?

Dr. Joshua Briscoe 40:15
Oh, man, it’s such a great question. That’s a great question. So cancer research is evolving. So yeah, bygone eras of cancer research, the main outcome everybody cared about was overall survival. And then we sort of moved into an interim era, if you really get down to the research where they use these sort of stand-in markers, like does this lab value go up or down, and maybe that correlates with overall survival, but still, we were concerned with overall survival. And of course, that matters, that’s an important thing to measure and think about, and that is one of the goals of care. But in our haste, as researchers, to look at cancer therapies, and measure overall survival, we weren’t really doing a good job of tracking other things. How’s this person’s function changing? How are this person’s symptoms changing? The field of oncology is changing, because now they’re looking more at what are called patient reported outcomes or PRO’s. And trials are starting to look more and more at this and find, actually, sometimes they track with overall survival. So a patient who is doing worse, has worse function and more symptoms, lives a shorter period of time. Well, of course, I mean, that seems like common sense, but now that they’re looking at it, they can show it in their trials. And so we have more information, or we’re getting more information to say, I’m weighing these two treatments. And now we have the research to show this treatment is gonna help me live longer, but also make me feel worse. This treatment might not make me live as long but has less symptom burden, because they’re actually measuring it in trials. We don’t have it there for every cancer type or every cancer stage, certainly, but colon cancer and GI cancers are leading the way really in the patient reported outcome realm because there’s so many symptoms and functional deficits associated with GI cancers. And so it’s really encouraging to see the research growing in that direction.

Manju George 42:11
Julie is a Patient Advocate at the NCI Colon Task Force. And I’m a Patient Advocate of the NCI Rectal-Anal Task Force. So maybe this is something that we can try to push to keep all the goals of care.

Julie Clauer 42:38
Can I just ask a follow up on that, just if you would have an example of like best practice or gold standard for patient reported outcomes, either a specific trial or just in general, like what’s used, because I’m just not familiar with those as much.

Dr. Joshua Briscoe 42:53
Yeah. So I mean, of course, so this is the thing with research is they develop these scales that are ideal for research, and they’re very extensive, and then often not clinically practical. I mean, they’re long forms, and nobody in the clinic is going to fill these out. And so we’re still in the research phase, as far as I know, and my familiarity with the evidence, in the research phase, and as far as clinical adoption of like, let’s actually do the symptom assessments. We are less there. And so unless you’re seeing a palliative care doctor, you might not get asked at every visit about your symptoms. You might get a broad, like how are you doing or that sort of thing. And you might get a form to fill out that the doctor may or may not read. But as far as clinical adoption, it is limited. I’m not a researcher, I can’t speak to gold standards. But as far as clinical adoption, we’re moving in that direction. I think what’s great about organizations like Paltown and Colontown and other things, is you can get grassroots advocacy for like, hey, this research is meant to benefit us, let’s have research that’s relevant to the things we care about. You know, because sometimes, clinicians and scientists kind of get lost in their own realms and measuring things that actually don’t have any impact whatsoever on the wellbeing of patients.

Manju George 44:19
Thank you for that. So I remembered my question. So we have this idea that lots of late stage patients, when they look at treatment, the thing that they have in their mind is that they want to get to a cure, but it being late stage, that might not be a possibility for everyone, right? It depends on what the spread of the disease is and what the biology of the disease is. So the alternative is to think of for a certain percentage of patients thinking of cancer as a chronic disease they have to live with is another option. But we find that a lot of patients are very, very hesitant, and they are only willing to look at the case of a chronic disease only when they’re sure that there is no chance for cure. What do you suggest so that patients can start from the beginning to think of either cure or treating as a chronic disease is okay?

Dr. Joshua Briscoe 45:14
Yes.

Manju George 45:14
And whatever comes and whatever they can get, the benefits they take. But it kind of goes with what you said about goals of care and how changing it to the course of the disease is helpful. So, I would like you to comment and give some specific guidance.

Dr. Joshua Briscoe 45:27
Oh, that’s such a good question, too. And what I like to rely on when I think about this is the journey metaphor. So, you know, so often, and this could be a talk in itself is we use the war metaphor in the realm of cancer, we’re fighting the cancer, these are our weapons against the cancer. You know, he lost his battle with cancer, he won his battle with cancer, war metaphor. And that’s useful in some settings, but I struggle because it means that it puts a lot of responsibility on the patient, like, if they lose, they lost, they didn’t try hard enough. And so I really appreciate the journey metaphor for a number of different reasons. And for this particular reason, I appreciate the journey metaphor, because when a patient prioritizes a goal of care, and they say, I really want to focus on longevity, and cure, whether cure unreality is possible or not, they say, I’m going to focus on cure, that’s a journey, they’re going on a journey. And they’re going to bring companions with them, their family caregivers, their healthcare team are going to walk alongside them on that journey. And there’s nothing that says they can’t choose a different path. But it does mean they’re going to be walking down this path for a while. They’re going on a journey. And there’s going to be obstacles that come up, and there’s gonna be things that change. My companionship with a patient who’s on that particular journey with those particular beliefs, I don’t see it as my role to like, cajole them and like, say, alright, you gotta believe, you’ve got to see reality the way I do. Rather, it’s just a patient, steadfast, abiding with them that the journey is hard. And eventually, one way or another, I mean, their life circumstances will shift them down a different path or not, maybe it won’t. But I’m there as a palliative care doctor to help support them in the best ways I know how, again, keeping those meaningful things to the forefront of thinking. Sometimes, thinking you’re gonna get cured of a cancer, when that’s not possible, actually might not impinge upon your meaningful activities at all, you’re gonna enjoy your life and live it up. And then, maybe you’ll get sicker and maybe, eventually you’ll die. And you’ve lived life to its fullest. And that’s okay. And so to the extent that I can, I try not to argue with patients about facts or the reality of their illness and instead, I’m going to accompany them. And eventually, actually, much of the time, eventually, the illness itself brings it before them and is the one that convinces them that like, oh, man, I saw this, this isn’t going to be cured, or whatever the case may be. And at least then I was able to preserve our relationship along the path versus like, every time we meet I say, you know what, Mr. Smith, we’ve talked about this before, you’re not going to get cured, don’t you understand? And then they’re going to be guarded. And they say, oh, you know, I’m not gonna go back and see Dr. Briscoe, he always talks about doom and gloom.

Manju George 48:19
Another thing that I’m kind of interested in is to have a guide for patients to think about. Like considering whether they’re early stage, late stage, what their molecular markers are, what treatments, because we know that in colorectal cancer, what are the options that are available, right? So it’s not directing anyone to anywhere, but like, a map of the terrain. You know, what’s next, what’s around the next bend? So that you are more aware. If you need to change course, you know what’s around, right, but rather than being blind, and when you turn the corner, and you’re like, Oh, my God, what do I do now?

Dr. Joshua Briscoe 49:00
So I will say, I’m a palliative care doctor and at the Durham VA, my academic appointment is through Duke, but Dana Farber Cancer Center actually does just that. They have these things called Pathways. And even though I’m not a Dana Farber doctor, I’m familiar with this. You can go online and Google it. And as far as I know, they’re not publicly available but you could probably reach out to clinicians there and say, hey, you know, I’m either a patient or an advocate or a clinician who’s interested in this Pathways Program. Can you tell me more about it? And how they think about that, because the way I understand it is that is personalized mapping. You know, you are here. This is the paths going forward. And this is where you’ve been, exactly what you’re talking about.

Manju George 49:46
Okay. I’d be really interested if you can give me a reference to a palliative doctor or somebody who’s following this. It would be great for us to bring that doc on DocTalk and have him talk about it.

Dr. Joshua Briscoe 49:58
Yeah. I can give you one.

Manju George 50:01
Okay, that sounds good. I want to hear about your the Family Notes, the different topics that you cover. Can you tell us about it? I find it is a great resource.

Dr. Joshua Briscoe 50:12
Thank you. Thank you. Yeah, so a little over a year ago, I started an email newsletter to my mentees in the fellowship program here at Duke. And it was just mostly stuff I had been reading that I thought was important and engaging in medicine and beyond, in culture and society related to palliative care. And then I brought in that audience to the general public, and I write things about important matters. And so I call it Notes From a Family Meeting because something we do in medicine a lot, is sit down and talk with families about the best care to provide to loved ones. And we have meetings and talk about what’s important and exactly what I’ve been talking about here, like what is most important. And so these are my thoughts from caring for a lot of different people, a lot of different families, thinking about, how do we think differently about healthcare in ways that we can use our healthcare to help us do meaningful things with our lives, and not get caught up in like waiting rooms, long pharmacy lines and spend our whole lives desiccated down into just this over medicalized living that is not meaningful for a lot of people. And so I’ve written about goals of care, prognosis, assisted suicide, you know, other topics relating to medicine, and I hope to continue writing and sharing topics about that. I think it’s important to think about these things from a broader perspective than just like, the individual research trials.

Speaker 1 51:41
Yeah. I also was really interested in you talking about the burden, right? Like you mentioned a little bit about it, about as people we are not the burden, it’s the illnesses we carry that is a burden. Yeah.

Dr. Joshua Briscoe 51:54
Yes. Totally. Yeah, I think that’s just so important that people get so demoralized, feeling like they’re burdening their loved ones. And the fact of the matter is, like even as an able bodied, fully functioning, healthy person, you burden your loved ones because they love you. I mean, that is just part of being a human in community. So even if for whatever reason, your family isn’t around or you don’t have a family to care for you, society stands ready to care for you and you aren’t burdening society, you are burdened by your illness and society stands ready to help you bear that burden.

Speaker 1 52:30
Okay, I think with that we can stop and thank you so much for your time and for all the information and I will edit it down and just remove some gaps and this video will be available on Colontown University. I’m happy to share the link with you and thank you so much. This is amazing.

Dr. Joshua Briscoe 52:46
Thank you all. Have a good day.

Manju George 52:47
You too. Thanks.