Empowering Patients to Speak Up for Your Health
Check out the video hosted by Memorial Sloan Kettering entitled: Empowering Patients: Speak Up for Your Health. The link is listed below as well as the transcript.
The Empowered Patient: Speak Up for Your Health | Memorial Sloan Kettering Cancer Center (mskcc.org)
Barbra Rothschild: Hello, everybody. Welcome to the special information session hosted by MSK’s Patient and Family Advisory Council for Quality in collaboration with the Ethics Committee at MSK. I’m Barbra Rothschild. I’m a Physician and I’m a member of the core faculty at Columbia University specializing in bioethics. My colleagues at MSK have asked me to help moderate today’s event on speaking up and the importance of advocating for your care and treatment. Thank you all for joining our session today. Our panel will address some of your specific questions and concerns. We’ll also share some tools and knowledge that we hope will give you the confidence to speak up about your health. MSK’s Patient and Family Advisory Council for Quality or PFAC, was founded in 2015 by a partnership of current and former patients, family members, caregivers and clinical and administrative staff at MSK.
They work to ensure that the patient and family voice is heard and to help the hospital provide the highest quality patient and family-oriented care. So, before we get started today, I just want to frame our discussion a little bit by saying, I understand I would be attending this as well, even as a physician, when I bring my own kids to the doctor, I feel intimidated and vulnerable because I very much want something from my physician and caregivers. I want them to fix my problem and that makes us all feel vulnerable. People have many different reactions to feeling vulnerable. Some people get quiet, some get angry, some feel invigorated. So we all need to have a little patience and understanding with ourselves and with others as we negotiate through the process. We live in a diverse society with diverse expectations and diverse ways of communicating, and that can be another challenge. Some people are very direct, while others expect you to notice their discomfort. It’s both a challenge and it’s what makes our world interesting and rich.
I’m joined on the call today by Anna Varghese, a Medical Oncologist at MSK; Lisa Wall, a clinical nurse specialist at MSK; and by MSK patient Mark Kesslen and caregiver Johanna Schoen. Thanks to all of our speakers for joining us here today. I want to start by briefly sharing a fictional case study that we think will help get to the heart of some of the larger issues that patients and caregivers have while trying to advocate for their own care.
All right, so Catherine is a 42-year-old real estate agent and mother of two with advanced colon cancer. Her oncologist, Dr. G, has recommended an intensive combination of three chemotherapies which may shrink the tumor and allow for surgical removal. Surgery is the only chance of cure. Catherine says she will do whatever Dr. G recommends. Catherine tells Dr. G that her young family is emotionally and financially dependent upon her and that she intends to do everything in her power to fight this cancer.
Last week, Catherine’s chemotherapy appointment was delayed three hours and she was unable to pick up her child. This was not the first time this had happened, but she didn’t say anything to the nurse or Dr. G for fear of being difficult. At a follow-up visit, Dr. G asked Catherine whether she is experiencing any chemotherapy side effects such as nausea, diarrhea, fatigue, loss of appetite or others. Catherine has frequent debilitating diarrhea, but tells Dr. G that she occasionally has mild diarrhea. Her husband, Michael, starts to speak up, but Catherine interrupts him with a question about surgery. Later, Michael tells his best friend that he is concerned about his wife’s ability to tolerate the chemotherapy and is unsure what to do. Two days after her next cycle of chemotherapy, Catherine is admitted to the hospital with severe dehydration, low potassium and weakness.
So, Mark, if we could start with you, can you relate to the experience of this patient? Tell us what you think about speaking up.
Mark Kesslen: Sure, thanks, Barbra. I wish I couldn’t relate to the experience, but I actually can on a very personal level, as I’ll talk about later, I’m very type A and very much a control freak and I spent a lot of time with my doctor understanding my diagnosis and my treatment. But I never asked any questions about what my first infusion treatment was going to be like. And I went on the day of my treatment at 11 o’clock in the morning. I had a four-hour delay. I was apoplectic. I was nervous. I was scared. I then went into the infusion room and things just started happening. I started getting treated, but I didn’t know what was happening. I was in pain. I was uncomfortable. I was angry from the morning. I finally left at 9 o’clock at night and knew that that couldn’t happen again. And it was just such a disastrous first experience and I had 11 more treatments to follow over the course of the next six months.
The next day, I called the scheduler and said, how do I change this? And she said, this day is better than that day. If you can get here at 8 o’clock in the morning, you might have an hour delay. And so, I started my first kind of advocating how can I change my schedule and then when I met the chemo nurse the next time and chemo nurses are awesome. So, I asked them tons of questions. They all have something different to say, but also something different to teach you. And this nurse really explained what my expectations were, how we could change the infusion, so it was less painful. Other things we could do, and I can’t say the next 11 were simple, but the next 11 were certainly better and gave me the power to change the way that happened. And I had hour delays, I had pain, but it was fundamentally different than the first experience I had.
Barbra: Thank you Mark. It was so helpful because in your answer, you gave us a lot of things that we can do about speaking up, reporting what’s distressing us so that things actually improve not just for you, but maybe even for others. Anna, when patients experience delays such as Mark did or the patient in our case did — does this information you want to know about and what method would you suggest patients use?
Anna Varghese: This is absolutely information that I would want to know because to try to figure out ways that we could help to try to help make the future treatments go more smoothly and to help make their treatments go smoothly and get a better sense of that we’re all on the same team as we very much are. And I think at MSK, as Mark was referencing, we very much work as a team and so when someone comes for a chemotherapy treatment, their team includes the doctor. But in addition to the doctor, the nurses and the office practice nurses and the nurses who give the chemotherapy and the schedulers and the people who draw your blood and so many more and pharmacists too. So, it’s important to know to share that, I would I would want to know because sometimes there are things that we can do to help, like Mark said, mentioned that the schedulers were giving him tips on how to better, when times might be better and what might work for them.
And those would be the kinds of suggestions I would hope that I would make too. For instance, like Mark was suggesting first thing in the morning often as a way to get there before delays may start to build or at the end of the day, those were suggestions I would start with. And sometimes the delays are from me and I might just be running behind and that’s very — and that is something I always am striving to do better for. But sometimes I see a patient at 7:30 in the morning and they have been the first appointment of the day and I’ve seen them, we’ve gone through and I finish on time and I think, oh my gosh, what a good morning this is, I’ve gotten that person through and then I get a message at 11 or 11:30, like Mark was saying four hours later, and someone asking a question that makes it very clear that this person who I know must have woken up at 4:30 in the morning to get to see me, still hasn’t started their treatment. And I truthfully had thought they were well on their way. So, unless someone tells me, it’s hard to know and then we can try to make suggestions to make it better.
And I think being direct is the best way to do that, whether that’s directly to your doctor with a portal message or a phone call soon after that visit, or if it’s a conversation at the next time that you see them. But I think being as direct as you can, and I appreciate that that is not always everyone’s first instinct to go to their doctor or their nurse or whoever and tell them this was very upsetting. But I think that can be the best way to let us know so we can try to help for future treatments.
Barbra: Lisa, what have you seen more when patients have valid complaints about care?
Lisa Wall: Well, just like Mark and Anna said, speaking up is just so important because many times we’re sort of in the back after a patient has left our care and we don’t necessarily know what their journey has been like. And so, unless they let us know, then we really can’t help. And so, there are certain obstacles that we can either mitigate or actually these barriers we can we can get rid of. So, it’s really important because each person comes with different priorities, a different story, in Catherine’s case and the case study it was that you she to get home to her kids and that she found very distressing. And if patients are experiencing cancer treatments and distressed about something that we can really help with, we want to do that and that’s so important.
I think when patients start treatment, it’s important and Mark kind of alluded to this is to ask what to expect, because sometimes there are preemptive things that we can do. Patients come, maybe they don’t bring a snack with them or drink with them and they have a long day ahead of them and they’re not anticipating that. So, asking what to expect on their treatments is really important. And maybe Catherine would have made other arrangements if she knew what to expect. So sometimes knowing what to expect, you can kind of prevent the problem from actually happening and that’s really important.
Barbra: And I think what I hear from both, you Anna and you Lisa, is that you’re not angry that somebody has told you as long as everybody keeps a cool head and just reports what’s going on, you’re actually grateful to get feedback and you want to help fix the problem. So, I think that a lot of people have fear. I think Mark referred to being fearful, being nervous but actually, I think everybody’s in this and to wanting it to be a better experience.
Barbra: Johanna, the caregiver in our case, is in a difficult situation, knowing information that the patient doesn’t want to share with her doctor about her diarrhea. What advice would you have here?
Johanna Schoen: Sorry, the unmute. I want to first echo the importance of communication that Anna and Lisa emphasized and then also the very real feeling of frustration that Mark talked about when he was remembering his treatment. And so, I think that the importance of communication between patient and caregiver is really, really important here. So often a patient really feels overwhelmed with the consequences of the illness and of the treatment, as Mark suggested right. It was really difficult to anticipate how one will feel going through this experience and also unwilling to concede how much a cancer diagnosis and cancer treatment is going to interrupt a normal life and really trying to hold on to the remnants of that normal life. And so, it’s useful for the caregiver to find a way to step in and to function to a certain extent as an intermediary between the patient and the clinical team, but also really to offer support to the patient, to realize and to concede some of the larger ramifications that a cancer diagnosis and cancer treatment hold.
So here, for instance, I would speak to the patient about their hesitation to discuss the side effects and point out that discussing side effects with the clinical team is important because it will more likely to have positive effects rather than negative effects, and that the clinical team really is there to help. And I would concede that the treatments can be overwhelming but also that we probably have to come to terms with the fact that life will not run as usual and that that itself can feel frustrating and overwhelming and disempowering. And then to some extent, I think I would push back against a patient’s refusal to admit to the difficulties of side effects and other things and asking and hypotheticals in the clinical treatment room, right. So, one might ask a physician, for instance, when the patient says they haven’t experienced severe side effects, one could say something like, this is not what I have observed and say what one has observed oneself, or maybe even better, ask the clinical team.
I have been concerned about X, Y and Z and just talk about what one has observed as a caregiver. And a good clinical team will pick up on this. Even if the patient doesn’t want to talk about it, they will hear what the caregiver is trying to say. And then last not least, I also kind of get at the core of the worry, which I see here, partly the ability of the patient to work and support the family financially, which really means like in the beginning, as we settle into the cancer diagnosis to seek help from anybody within MSK and outside, that is available to help, social work, talk to friends, talk to relatives, because as treatment goes on, this is not going to get better. It will possibly get more difficult. Sometimes, though, it also works to kind of settle in and just wait things out. So maybe it’s not possible to address something in the first treatment or the first or second meeting with the physician. But it is possible to bring something up in the third or fourth because things have shifted in the way in which the patient and the caregiver kind of communicate with each other.
I guess the last thing I would say, though, is I would note that a patient and caregiver don’t have to agree on the exact understanding of the illness and the treatment impact. Indeed, they might never agree on it. Looking at a cancer diagnosis from a caregiver perspective, it’s always fundamentally different than looking at it from a patient’s perspective. But a caregiver can be really important and trying to step in as an advocate with the observations as they see the cancer. And that might be one way to kind of couch these communications.
Barbra: Thank you. I think often we underestimate or even worse, forget the importance of the caregiver and the very difficult role they often play in the care of patients. It’s a very valuable voice. Lisa, to that end, underreporting side effects can often be detrimental to the patient, as we have seen. How important is it for patients and clinicians to have an open and honest dialog when it comes to reporting side effects?
Lisa: Oh, it’s extremely important that we know what the side effects are of any treatment and also the scale of those side effects, in this case, she was experiencing severe diarrhea. By withholding that information, it disallows us from helping and the symptoms don’t go away on their own but oftentimes, it’s the fear. Patients who are afraid that if I tell them I’m going to go to urgent care or I’m going to maybe my treatment, will be stopped and that’s not usually what happens. I’m not saying it never happens, but it’s not usually what happens. What usually happens is we have a lot of ways that we can help these symptoms and mitigate them and help patients and support them through their treatment so that they have successful outcomes because that’s really what the goal of this is, is to get you back to your life.
But while you’re experiencing cancer treatment, we want you to have the best life that you can have during this time period. So, it is so urgent that you really tell us early because the earlier that we can intervene, the better it is at mitigating the symptom from really becoming far worse.
Barbra: Great, thank you. Anna, one of our viewers wrote in, when one asks to understand details of treatment, i.e., which drugs chosen, dosages and why, what kind of response should a patient expect?
Anna: Well, it depends on the situation but certainly in some of the cancers that we treat, some of the treatments, for better or worse, maybe years or decades of old regimens that we’ve used and gotten very comfortable with. And so hopefully the person you’re asking the question to or your doctor, your nurse would be able to help share with you some information about studies that may be led to that, depending on how detailed someone wants the answers to be. And I’ll often say, well, some people like a lot of information, some people like just a little bit of information. Tell me, what kind of person are you to help gauge sort of how much information to share it to and answering a question like that. But sometimes we’re really on the cutting edge where we’re building on giving people treatments that maybe they were just approved in the last several months or a year or so.
And I think to a particular patient — a few patients that I take care of where we’re using treatments that really were studies, that based on studies that were just presented at an annual meeting or just published. And I think accepting and understanding and sharing that there are unknowns because they will ask me very good questions. “Well, what about this dose? What about this schedule?” And I’ll say, “I’m not sure,” but within reason we’ll do our best, I think, to try to help manage side effects. And maybe that does mean adjusting doses and understanding that there is certainly a lot we don’t understand about cancer and their treatments. And I’ll be the first to admit that. So, I think a reasonable expectation for an answer to that kind of question is to share with the person sort of the science of where this information and these doses and regimens come from.
And also understanding that some of these are, again, years in the making and regimens that we’ve used and gotten very comfortable with, but sometimes they are really new one where, for better or worse, learning together. And that’s where, as Lisa was mentioning, sharing information about side effects and how you’re feeling is so critically important, because we do often need to make adjustments and often it can help us continue the treatments safely. And in Catherine’s example here, by not sharing some of that information, and I think her goal was almost certainly to keep getting the toughest treatment she could in an effort to get to that surgery and cure her cancer. But in fact, by not sharing that information, almost certainly one of her future treatments will now be delayed or she’ll run into further complications that actually will limit our ability to do the treatment.
So, I think sharing that information is critically important, not only so we can help manage your symptoms and help live life better and help you be able to take care of your family and do all the things that are important, but also just as important as to be able to help continue these treatments safely and give you the best outcomes.
Barbra: That’s helpful. I think uncertainty is something that is difficult to manage for everybody in health care, the nurses, the physicians, the patients, and we’re uncertain about all sorts of things which brings me to a question for Mark. Another viewer asked, how do I speak with my physicians to give me the whole picture without holding information back? And Mark, so how did you deal with this as a patient?
Mark: So, Anna just said something that really resonated with me as a patient, which is I always think of medicine as a science and with an answer, and I think medicine is more of an art form than it is a science. And what I mean by an art form, there’s lots of different ways to interpret it. It’s very much pattern recognition and data driven. So, I think as a patient, the fact that you ask a question and get, I don’t know is Anna just said can be very frustrating. But for me, on the flip side, I’m very much a data person and a science person. I’m very interested in this. I always remember the NPR commercial of MSK, more science, less fear. And that is something that actually — it sounds silly, but it actually pulled me in, and I actually found an oncologist that really worked with me in that way because she got used to me and she never tired of me, I asked endless questions, she was patient.
She didn’t show empathy, which I’ll get to in a moment. But that was okay for me. I think Barbra said at the outset, it’s a diverse world and everybody’s looking for something different as a patient. So, the fact that she was very data driven worked for me. And in fact, in between appointments, she would do research and come in with books and show me as she was trying to diagnose what the cell looks like, why it’s this way, and knew that more information was better and was going to give me comfort. For me, the empathy piece was less important. I had my wife, I had my family and the rest of the MSK staff for me, where couldn’t have been more empathetic, but she gave me the answers. She gave me the analysis and allowed us to make a decision together. And she never made me feel stupid for asking questions. She welcomed it.
And so, I think — we’re all a little intimidated by the white jacket factor, when you see the doctor in the white coat, maybe I’m also a professional. I have friends who are doctors, so I didn’t have that same fear. But I think it’s natural, but they’re there to help. Just ask the question. And I felt everybody was welcoming to me in my opinion, for me.
Barbra: I think that’s helpful. Anna, back to you for a second. Another — we got many questions about second opinions and actually I think this is something that is widespread. Many people think about this. You’re always being recommended, you should get a second opinion, you should get a second opinion that that’s gold standard. But actually, doing it feels very it can feel very uncomfortable from the patient’s perspective. So how should we handle second opinions without offending the doctor who’s treating you or impacting your relationship with your oncologist?
Anna: That’s a great question. And I can feel it, sometimes when I’m seeing patients as a second opinion that they’re feeling conflicted even to have come and see me, that they’re sort of cheating on their doctor or they don’t want to or I’ll ask them, “Oh, who’s the doctor who’s caring for you?” Usually and sometimes they almost don’t want to say, in the kindest way. But I think that I fully welcome second opinions both when I see patients if I’m their second opinion. But I’m often in a position of encouraging patients to get a second opinion too and I’ll talk about that in a second. But I think in general, in oncology, and I hopefully I speak for most of us in the community, I think appreciate that none of us has all the answers. And at least in my head, I think we’re all trying to find the right treatment for you, for that person who’s sitting in front of us.
And these situations and these decisions are from almost everyone too serious, like you need to feel comfortable that you are getting the care that you need and that you deserve. And one way I think to do that is to seek out another opinion, to see and perhaps that person says, you know what, this is exactly what I would be doing for you, too. And that’s a best-case scenario, I think where you go, you get another opinion and you see the other doctor and they say, “Yeah, this is all great.” And then you can go back to your doctor, closer to where you live or wherever it is you’re getting your care and feel 100% comfortable there. But I think most oncologists also are happy to get advice and are happy to work together, understanding that these can be such challenging situations that if someone else has a good idea for you, for the most part, we’re all eager to come up with the right treatment plan for you.
And I think that there are often I’ll tell patients when they’re worried about sharing with their doctor that they’re getting a second opinion, the only situation that makes me nervous is when your doctor doesn’t want you to get a second opinion or makes you feel bad for having gotten a second opinion, because truthfully, we’re all in this together. And that’s the only red flag that comes up to me when someone says, oh, I think they you’re going to get mad, or I think they got mad or something. And that’s just so uncommon. I can understand the concern, but I think it is very uncommon. And if your doctor is hesitant for you to get a second opinion, that is the one situation that brings up a red flag to me. And I’m often, as I was saying, sometimes I recommend that people get second opinions. If I get the sense that someone just isn’t happy and either they’ve directly told me that.
And I would fully encourage people to be direct with their doctors if they feel like this isn’t the right plan. You’ve given them the answers to the questions you were asking Barbra before about how did you come up with this treatment and these doses and sometimes I can feel it that they’re not happy with it or they tell me very directly and I’ll say, I just get — my sense is you don’t think I’m — or you are may be interested in going in a different path than the one I’m suggesting for you or I feel like you’re worried that I’m not being aggressive enough or I’m being too aggressive, whatever the situation is. So I actually often will encourage people to get other opinions so that they can feel comfortable because, again, these situations and these decisions are too important and too serious. So sometimes in oncology, it can be sort of a smallish community, particularly if you’re caring for patients with less common diseases.
And we’re in a city, thankfully, with many wonderful academic centers. So I’m often helping put people in touch with other doctors for second opinions, only because I want patients to feel comfortable and confident in their care, to trust that we are doing the best that we can and to know that none of us has anything to hide and if anything, we’re eager to, if you have a better trial or a better treatment that you’ve used, that’s how people that I think is reasonable, I’m usually all ears, but sometimes I’m happy to talk further about, if you get different opinions, because I think that can sometimes be a challenge. And that I can also feel when I tell someone something that I know is a little bit different than what someone else has told them. Happy to share that now, I know there’s many wonderful opinions here too.
Barbra: I think if there is a different opinion, could you talk a little bit more about that?
Anna: Yeah, so I think — so I will be honest, once in a while and at a place like MSK, we all become kind of super specialized so we can really get into the details or the weeds of sort of specific diagnoses and specific stages and the treatments and I think that’s what most people come here for. And many doctors in the community also have all of that knowledge but sometimes people are caring for patients with breast cancer and lung cancer and colon cancer, and it would be hard for them to have all the quite the details. So once in a while, there will be situations, certainly, and that’s why someone comes to see us to get our best advice. So once in a while, I will have an opinion that’s different than what someone has gotten before. Sometimes it’s really — oh, gosh, this is really not what we would be doing for you here and this is different, and I’ll share that with someone because that’s why they’re coming in.
And I’m happy to talk with their doctors, too just to see if there’s something that I need to learn or they’re doing it differently because they have certain data. And I’ll share with the patient what’s different and why it might be different and why I have the opinion I do and why I think their doctor might have the opinion they have. And if it’s something that I really think is different or not and I’m thinking of a very specific situation which I’m happy to share with you in broad strokes, the patient with an uncommon cancer, with an uncommon genetic change and there’s not much data about it. And this is very much a situation where we’re kind of on the cutting edge and trying to pull from other situations. And they have seen another doctor at an excellent hospital an excellent cancer center, and they’ve recommended something a little bit different than what I’m doing.
And so, I reviewed with them. I think they’re suggesting this because they’re extrapolating from data in another situation. And I’m not certain that that data applies to you. So I don’t think it’s wrong. And I think they have your best interests in mind, too. But having cared for you for three and a half years, I don’t think that’s the right thing for you because I’m worried about the side effects for these problems. So, it’s not — there are just different opinions, and that’s what they are, and sometimes, as Mark was saying, sometimes they’re science, but some — there is absolutely are this too. So, I share with them why I might have a different opinion. And if I really don’t feel comfortable doing something, because ultimately at the end of the day, I’m the one writing the orders and the one helping to manage side effects when they come, I won’t do something I’m not comfortable with.
And if someone really doesn’t think that’s the right thing, then that’s why you get another opinion. And maybe it makes sense to do care elsewhere. And we want again people to feel comfortable with the care they’re getting. And then again, sometimes I’ve rarely, less commonly than you would think, I really think someone else is doing, like someone has come to see me for another opinion and it’s very different than what I might be doing, and I’ll share with them, too. And maybe I’ll encourage them to get yet another opinion as a tiebreaker to help that person feel comfortable with the situation, with the choices that they make moving forward. But I think, again, the only red flag to me is when someone says don’t see someone else, because again, we’re all in this to come up with the right treatments for you and the right options for you.
Barbra: We can go back to uncertainty as actually an essential part of medicine and while we would like to think that we always know the right thing, we don’t. And it is a patient’s right to ask questions, to find out and also to find somebody that they feel the most comfortable with. We and our planning meetings for this session, even among us, some people wanted a physician who said this is the right thing and there are people wanted a physician who said I’m not sure, but this is the way I think we should go. And that’s a style and we all have that right to find the fit that we feel most comfortable with as we move forward. Johanna or Mark, did either of you have any experience with second opinions?
Johanna: Mark, I don’t so maybe you want to speak to that.
Mark: I really have nothing additional to add that when Anna said. I had no issues, I thought it was just standard practice. I did it. I liked my doctor at MSK better. I got essentially the same advice and stated MSK. But it wasn’t a diagnosis issue for me as much if it was a personality issue of the doctor that I ultimately selected who I thought she was right for me.
Johanna: I would add to that, I mean, I think what Anna said was just right that it is really important to feel comfortable with your clinical team, and if you don’t, then I think it is reasonable and important to be able to see if you can find somebody with whom you’re feeling more comfortable, right. And that can be on the level of getting all the information that you need, like Mark suggested, or somebody who shows empathy in a way in which you need empathy in order to do so. So that’s the one thing I would add to this.
Barbra: Anna, we have another question from the viewers. This one is, what are the most important questions to ask at an initial medical consult for your child to ensure their best medical care? And can you answer that sort of even as a patient or if you’re asking for your child, what you think are those initial questions?
Anna: And I’ll preface this with I’m a medical oncologist, although certainly I think the questions though, that a parent would be asking for a child who is a patient and for a person who is the patient themselves, I think there’s a lot of overlap there. So happy to talk with you about that. Well, I think, first of all, would just I’ll share with you kind of what my agenda is when I meet someone at their first visit. And then I’ll share with you hopefully how that will overlap with patients and the questions that they have and their agenda for that visit too, because I think always important that we share kind of this is the information I’m hoping to get out of this visit. So sometimes I’ll even start a visit with a patient to say, well, what questions do you have so I can make sure at a minimum I answer those in addition to what else I think is important for you.
And then sometimes they’ll say, well, once you talk and we’ll see what else there is. And so, when I’m meeting someone for the first time, usually I want to share and whether that’s a second opinion or not, sometimes I’ll still want to share this information. I don’t want to belabor points that people already know, but I want to make sure we’re all starting off on the same page. So first, I want to make sure we’re clear on what the diagnosis is that we’re discussing. And that might be a straightforward conversation, but sometimes that’s actually not and that’s part of the reason for the visit. And that often includes both my interpretations, but also the interpretations of pathologists and radiologists.
So just clarifying the diagnosis, clarifying where there’s evidence of cancer and what the stage of the cancer may be. And in some cancers, that’s very important. In other cancers, that’s sometimes less straightforward or less relevant to the conversation and then what the treatments are that I’m thinking about for them and along with that, in broad strokes, what the schedule is like and what the side effects are that you might expect. And importantly, what’s the goal of that treatment? Sometimes we’re meeting patients where the goal as it is with Catherine is hopefully to get to surgery and it sounds like a cure for that person in their cancer. But sometimes that is not always our goal, unfortunately, depending on the cancer, depending on the stage. So, I think being honest as best as I can with the goals of the treatment.
And then I also will try to address if someone mentioned any symptoms that are troubling them, we’ll try to take them as best as I can to manage those one by one and suggestions that I might have. And then sometimes I also ask people understanding that usually these diagnoses and these treatments were not part of someone’s plan. And I’ll ask sort of what they if, let’s say I’m recommending, like, it sounds like Mark may have had a sort of several month course of treatment or a longer, I’ll say well, I understand this is not what you were planning for summer of 2021. What were you planning and are there things we need to work around and that might get to people’s issues about picking up their kids and their schedule or a graduation that they’ve been looking forward to, or the birth of a grandchild or a school event if it’s for a patient who’s a child.
And then trying to figure out how to plan around that as best as we safely can within the goals and the kind of treatment that person needs and also being honest, if I don’t know that those are realistic expectations so that they can start to plan. And then I will usually ask what questions that person has for me and sometimes, for better or worse, I’m talking too much, I’ve answered all their questions and then often they have their own questions. And then getting to Johanna’s point, I will sometimes you can feel some — these are — these are such hard times for people and their families and their caregivers that you can sometimes get a sense that a caregiver notices that someone’s not being honest about how difficult their symptoms are or how challenging this is or what their plans are. And the patient might say, “Sure, I’ll do whatever you say.” And someone says, “You know, you had really been looking forward to this trip with your family.”
So sometimes I’ll ask patients to share their information with me and then I’ll ask everyone else in the room, too. But I’ll try to give people separate time, so like with Catherine and her husband, she was trying to — he was trying to interrupt to tell, to share what he was worried about and she kept going. So, if I notice things like that are happening, then I’ll try to set aside separate time while everyone’s in the room to make sure everyone’s heard. And that, you could imagine, is a lot to talk about in, whether it’s a 45-minute appointment or a 60-minute appointment or terribly a 20-minute appointment or something. So, I think also sometimes trying to prioritize what’s most important for today and then understanding what we might need a second appointment or a third appointment or this is a conversation that’s going to be ongoing, depending on what’s happening with that person. And trying as best as I can, trying to layout those expectations too, that we can’t always address every single question at each appointment, but we’ll do our best.
Barbra: Thank you. Johanna, if you’re not lucky enough to have Anna as your doctor, maybe you feel your family isn’t getting the level of care that you want or are asking for. This comes from a viewer. What’s your advice as a caregiver?
Johanna: I’m so sorry. If you’re feeling that you’re not getting the level of care that you feel you need, it kind of gets me back to the point that you need to feel that you can establish a trusting relationship with your care team. So, I would certainly bring it up. And I think to start with, you can bring it up with the nurse or the physician with ever whom you feel more comfortable but if you find that that doesn’t really get anywhere, there are a number of people inside the hospital you should be able to talk to. So, for instance, you can call the patient representative and you can talk to the patient representative about your concern. You might also contact the Ethics Committee and ask for advice from them if that is necessary. But I would start with speaking with some people who are initially involved in the clinical care.
It is true that MSK doesn’t necessarily like if patients ask to move from one position to another, but it is really important to remember that patients have the right to good treatment and if they feel they are unable to get that from the clinician that they’re seeing, that looking somewhere else is highly appropriate. This is a long-term relationship that is only going to work if everybody feels comfortable with it.
Barbra: Great advice. Lisa, how do you handle family members who want to confide in you about a patient, about something that’s not right?
Lisa: This can be a little bit tricky at times. I think that Anna alluded to it is that we want to be transparent, and we want to build this trusting relationship and so we don’t want the patients to perceive that we’re doing something on the side. So, I think having those conversations together is really important. I think that family members bring a lot to the table. They’re supportive of our patients. They advocate for our patients in the case of Michael and Catherine, it appears that’s what Michael’s trying to do, is to advocate for his wife. But the patient at the end of the day is the patient and we need to respect that. But we can oftentimes getting that different perspective and I think Johanna had mentioned about that we get different perspectives from different people that it’s important for us to listen.
So, having the family, husband or spouse or whoever it is, the support system in the room with us, or if it’s a phone call, very often times I would say get on the extension and have the patient on there and let’s talk together about this, because cancer could be — it’s a patient that’s experiencing it firsthand, but it is really a family event. I mean, it affects everyone in that household. And we want to really make sure that we’re supporting the patient through the disease as well as the treatment but also, we have a lot of resources to help family members support their loved one through the cancer experience.
Barbra: Mark and I know Lisa is going to come back with us with some more specific suggestions. Mark, have you ever used a patient rep, or do you have any ideas on how the medical community could make it easier for you to speak up as a patient?
Mark: So, I’ve not I have not used patient rep. I have used other services that I learned through the chemo nurses that relate to me and whether they were acupuncture, meditation, yoga, clinical social workers to help me deal with it and things, going off on — I’m not answering your question directly, but then I’ll get back to your question, because I do think this is an important thing to bring up. And I learned through the chemo nurse after that first treatment that I mentioned earlier in the conversation that they have clinical social workers available and for me, it was a scary time. I was — I had a lot of responsibility at home and at work what I was going through. And I actually worked with somebody throughout my next 10 of my last 12 sessions who — I threw out my wife, I spoke to her and it was a really great period for me to understand what I was going through and address some kind of life changes or alternatives and things like that.
So, I think there’s a lot of services that MSK offers, whether they’re free or not, I don’t know. I don’t remember ever receiving a bill for it, but really to help you make your life better as you’re going through this traumatic period. I think answering your question about how the medical community can make it easier to advocate for myself, I think is a really tough question. I think that who am I to say in part, but I know that I have — my daughter has friends going through medical school. I think medical schools are trying to change a lot of the teachings these days of how to recognize the patient as a patient. We spend a lot of time talking today about recognizing what it’s like to be in somebody else’s shoes.
I think some doctors need to do, in my opinion, a better job at this. I think it’s really hard as a doctor to do that at the same time and stay emotionally disconnected. So, there is that tension that’s real and hard because particularly for oncologists, it’s not ankle surgery, it can be real life and death every day. But giving the time for the person to digest, I think to be patient and recognize that it could be their brother, sister, niece, nephew, child in that seat across the desk from you and what they’re going through, I think, is an important skill set, I think. And I think you’re seeing a change in medicine through PFAC organization, we’re doing a program called Death over Dinner, which I think is a great program to teach doctors and patients and understand the process that people go through it through end of life. And I think there’s a lot more discussions to be had and I think MSK is doing a great job, but there’s more to be done. I think that’s my best answer on that one.
Johanna: Barbra, can I add something to that?
Johanna: So, one of the things that we did that I just remembered is there was a point in the treatment of my partner where it felt like the cancer was really overtaking our relationship. And so, we went and started to regularly meet with a counselor in the psychiatrist’s office, which was incredibly, incredibly helpful to just kind of make sure that the cancer as it progressed, wasn’t hijacking the kind of life we had, but that we were still able to focus on other things. I think it’s really important to know that patients feeling of vulnerability can make them feel very impatient and frustrated with the process and the loss of control that goes with the process, particularly as health is declining, can really be underestimated.
And what that means as a challenge for the caretaker, I think can really be underestimated either. So, it requires kind of a shift to a different presence in which the caregiver can, on the one hand, have to sit with a patient and their frustration and help to alleviate it, but also an acknowledgment that the caretaker, him or herself, might also need help with this process. And so, it’s also really important, depending on the dynamic between the caretaker and the patient, to have an idea when it might be time to have somebody else go along to the chemo appointments and not have the caretaker be the only person who has to deal with the frustration that goes with it and to give the caregiver a break, but also to take advantage of the other services, like psychiatry and counseling that MSK has to offer to help everybody deal with the situation.
Barbra: Which reminds me, there’s a comment in the chat saying that I’m not quite sure how to speak up for your health when I feel everyone around me at MSK are the experts and I am not. It’s the only time in my life where I feel intimidated, and I wanted to speak to that for a second. I often speak in my class in clinical ethics about, yes, the physicians and the nurses around you are expert in that, but only you are expert in your goals and your preferences. And I think Anna told us that she asks about that at that initial visit. That’s the power that you have as the patient. Only you can know what the future should look like for you, how you want to get to that future, how much pain you’re willing to tolerate and expressing that is your expertize. And you should use that to give yourself a little oomph, a little more feeling of control.
And I also often tell my students that, particularly the medical students, to Mark’s comment about medical school training, in a day you may see 30 patients, but for each individual patient, that patient’s been waiting weeks to see you and has been nervous and scared and worried. And each individual experience for them is huge, even if it’s one of 30 for you. And so, remembering on each side that that’s the case and having empathy and sympathy while we’re having that experience is hugely important. It’s certainly important on the side of the physician to remind themselves of the import of each individual and although that takes a lot of energy, a lot of emotional energy. And actually, for good doctors and I think Anna would agree with this, that’s what makes being a doctor worthwhile. I also interviewed for medical school and they all tell me they’re coming into help people. So that’s the moment — yes, go ahead.
Lisa: I was just going to build on something that Johanna had mentioned about the patient representative and the ethics consultation is that many people are worried, sort of as Catherine and her family were worried about being seen as difficult. And I will sometimes, and I know my colleagues do too, well sometimes suggest that we meet with patient representative. One, if someone is having and everyone has different styles and as Mark was alluding to, every doctor is different and has a different personality and a way to interact with patients and for some people it really works and for some people it really doesn’t. But if I’m worried that there is frustration or anger with me, then I might suggest that we meet with someone in case there is a way that we can make this go more smoothly for them, whether that continues with me or not.
But also, for situations like Catherine’s with the long delays and things and like Mark’s unfortunate real-life situation too, the way that we — if it’s just one person and it’s just a one off, we’ll never know about it. But if it’s really a pattern and it’s every time for patients who have their chemotherapy between 11:00 and 3:00 o’clock, they’re waiting for hours or things, that’s the way we identify patterns and I’ll often encourage them to — that we have patient representative involved so that we can make things better not only for that specific person, but also for the people who come after them so that we can make sort of institutional changes. So, I don’t see it like a negative when we’re involving patient representative and I think sometimes people might feel that way.
But it more is a way to make productive change for you, but also for the many people who are here. And in the inpatient setting too, although this conversation is mostly focused on the outpatient setting, I think in the inpatient setting as well, that can be a time where you’re really worried, you’re not getting the right care or someone’s getting sick, you should also feel empowered to talk with your nurses and to reach out to those same folks on the inpatient side too.
Barbra: Lisa, did anyone else have another comments or thoughts? Before we wrap up, can you share some tips for patients to keep in mind as they head in for their appointments?
Lisa: Sure. I think that what I found helpful was to have patients bring a list of questions. So, you think of things as you’re anticipating this upcoming appointment, whether it’s your first visit or it’s a long-term visit and when you get into the room, you’re nervous and maybe you’re scared of what the CAT scan is going to show or news that you might be getting. So, it’s really important that the concerns that you have, you write them down. For some people, it might be helpful even to have two lists, make a copy of it and hand it over to the physician to make sure that your concerns get addressed. I also think it’s helpful to bring somebody along with you.
And if you can’t, maybe it’s your face timing or you have somebody on the phone during the visit so that you have a second set of ears because you really want to be paying attention and hearing what the doctors tells you and what the nurses are saying. But when you’re nervous, sometimes the information just doesn’t go through and having a second person there is very, very helpful. There’s no such thing as a stupid question. You’re not expected to be the expert in the treatment or the cancer. The doctors and the nurses here are, you may be very well read on it, but you’re coming here to get medical care. And so, the simplest questions are really very, very important, because if it’s not clear to you, then it really isn’t working well. So, we want to make it clear and so we can say it over again and maybe in different ways, show pictures of whatever it is that helps you understand what’s going on, because we need you to understand what’s going on so that you can report back to us the symptoms, the side effects and how you’re doing with the treatments.
Again, we talked about this throughout the webinar, but be honest with the medical team, is if you’re having severe symptoms, let us know early, because early intervention is really the key to mitigate symptoms and side effects or to prevent them. And so, it’s really the best way that you can advocate for yourself. What Barbra mentioned is be your own best advocate. You know what your story is, you know what your priorities are, what your preferences, what your expectations are, really what’s important to you. And if you let us know that, we can help getting you to where you want to be. Advocating for yourself can benefit other patients, that’s true. But really, we want to hear your story. And yes, we might identify a pattern that’s going to help people in the future. But if you’re the only person that’s experiencing this bad event, we want to know about it.
So, don’t think about doing this for other people. Do it for yourself. It’s really important that you’re important to us to know that, to believe that and that we want to really help you. Expressing concerns constructively, and I think that goes hand-in-hand with not waiting and letting something fester. If it’s the wait time, like Catherine experienced in this case study, speak up early, because if it happens the next time or the next time, you just going to get more and more angry about it and upset about it or distressed about it and you’re holding all that in. And that’s not really good for anything. It’s not solving the problem and it’s not making you feel any better. So be constructive.
Say it in a way that’s, I don’t want to say positive, but constructive that I experience this, and I found it distressing, very neutral and not letting it build up. And then if things don’t get resolved, call patient representative, call the ethics consultant if it’s something that’s between team members and yourself, if it can’t be resolved at that level, you need to bring in other resources and that’s something that you have the right to do.
Barbra: Great, thank you so much, I wanted to reiterate Sloan Kettering has an amazing ethics committee. I know some of the members and patients can call them for help. And it doesn’t mean it has to be a big disaster to call the Ethics Committee. Sometimes it’s just even about guidance and it helps. The Ethics Committee has a lot of aims, but one of which is education. So, they can both educate the patient and the team about a particular topic that there might be a question about. So, it’s definitely a resource that patients should avail themselves of and may not be aware of. I want to thank everybody who contributed questions and thank you anyone who took the time to join our session today. We hope you found it informative and helpful.
I also want to thank all of our speakers for sharing their insights and MSK’s Patient and Family Advisory Council for Quality, for organizing today’s session. Open, frank, non-threatening discussion and feedback is essential. And this is the crazy thing. It’s better for everyone. So better for patients, better for institutions, better for caregivers, doctors and families. By bringing this conversation out in the open, we can all learn to be better communicators and improve medical care not only for ourselves, but for patients who come after us. So, thank you PFAC very much for making this possible.
I think we’re going to put up some resources. We have some — for more information on the services available at MSK or to learn more about PFAC, you can visit mskcc.org and we’ll also make a recording of this session available for anyone who couldn’t join us today or who wants to listen again. Please be safe. Take care of yourselves and your loved ones. And I want to thank everybody who was behind the scenes who made this run so smoothly and was so supportive.