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.
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