Beyond the Cancer Diagnosis: Interview with Patricia Parker, Hosted by Adrian Pogacian

In the latest episode of ‘Beyond the Cancer Diagnosis’, Adrian Pogacian brings into attention the importance of Communication in Cancer Care, in an interesting discussion with Dr. Patricia Parker, director of MSK’s Communication Skills Training and Research Program (Comskil).

Patricia A. Parker, PhD is a Member and Attending Psychologist in the Department of Psychiatry and Behavioral Sciences at Memorial Sloan Kettering Cancer Center (MSK) and is the director of MSK’s Communication Skills Training and Research Program (Comskil). She has more than 25 years of experience in research in psycho-oncology with expertise in healthcare practitioner-patient communication, healthcare decision-making and quality of life in cancer patients.

The Comskil program develops curriculum materials and provides education and intensive, tailored training to healthcare practitioners in order to enhance their communication with patients and caregivers to enhance person-centered care. Comskil has trained more than 4000 practitioners (including fellows, residents, attending physicians, nurses, advanced practice providers). Dr. Parker has experience designing, implementing, and evaluating communication training programs. Dr. Parker has received funding from the National Cancer Institute, Foundations, and Philanthropy to support her work. She currently is PI of an R25 training grant to train clinicians of all disciplines to work and communicate more effectively and efficiently with older adults with cancer and their caregivers. She has more than one hundred peer-reviewed publications.

Adrian Pogacian, MS Psychology, clinical psychologist with executive education in Psycho-oncology, holding a degree in Global Health Diplomacy from Geneva Graduate Institute. Currently, researcher and associate lecturer with focus on Impact of Cancer Diagnosis on Couples and Families, Communication in Cancer Care and Posttraumatic Growth. His expertise is on Coping with Cancer and managing Fear of Recurrence.

Additionally, Founder of INCKA Psycho-oncology Center, Host of Beyond the Cancer Diagnosis Interview Series as well as Writer and Host Content in Psycho-oncology at OncoDaily.com, co-author of the first Romanian Multimodal Care Guideline in Pediatric Onco-hematology, active contributor to the International Psycho-oncology Society, presently IPOS Fear of Cancer Recurrence SIG member and IPOS Early Career Professionals in Psycho-Oncology Committee founder member.

Adrian Pogacian: Hello everyone, welcome to a new edition of Beyond the Cancer Diagnosis interview series. Today it is my pleasure to welcome Patricia Parker, Director of Communication Skills Training Program at Memorial Sloan Kettering. Hello Patricia, thank you. 

Patricia Parker: Thank you so much for having me. 

Adrian Pogacian: Thank you for accepting my invitation and our invitation and today’s subject is something very important in what healthcare and cancer care system is and we are going to talk about communication in cancer care. Dr. Parker, nowadays our world, our times are experiencing tremendous events and we are living like in, let’s say, chaotic world and one of, unfortunately, one of these realities is cancer, a disease that affects not only the patient but also the family and the family structure. 

After an oncological diagnosis, every patient will not be the same. In this big, let’s say, issue of cancer care, what is the role of communication nowadays?  

Patricia Parker: Well, it’s really fundamental. I think that everything that patients and families understand about the cancer experience comes through communication, right? So we need to be able to do it in a way that patients and families can have time to absorb the news, to understand the implications of it, to give clear messages about what to expect throughout their cancer trajectory or journey because so much is based on things they may see or have known someone and it may not be what their experience might be like. 

The cancer is really many different illnesses and trying to understand and provide support and empathy for the patients and families about these changes, how to focus on living rather than dying is something that’s also can be really important in terms of communication and also in addition to providing that kind of information and engaging in exchange with patients and families about their understanding what it means for them is providing realistic hope. Very, very important. 

Adrian Pogacian: You mentioned now the term realistic hope. 

I have to ask you that and I ask also other interviewers, are you agree with the statement that too much hope is false hope? You said realistic hope. 

Patricia Parker: Yes, so it depends on what the hope is for. So I think it’s okay to always have hope that people will live longer, that the disease might remit, that those things happen, but in a way you can hope for that and plan for other outcomes as well. 

So I think that having false or unrealistic hope is not necessarily helpful because so many things remain undone. There can be a lot of suffering in patients and families if they don’t really understand. Some people don’t want to know specifics and that’s okay. 

We can respect that. Some people can keep hoping and I think we should all as clinicians, as patients, as loved ones, we should all keep that hope, but with the caveat of really understanding what is also possible and trying to plan for those options as well.  

Adrian Pogacian: Nowadays or in the present days, why any questions? It’s definitory for every oncological patient and in an interview that I had with Dr. Alberto Postao, which is the CEO of European School of Oncology, he said that you can’t be a good oncologist if you can’t handle this question, why me? From communication point of view, how we can handle this why me question?  

Patricia Parker: Well, so much depends on the communication because we can never know for an individual why me, right? Even if we have the best clinical medical information, we still don’t know. 

So trying to one, help patients reduce stigma and blame for both themselves, for the, you know, from providers, from loved ones, friends, family members is really important because sometimes that’s in the why me, is that did I do something wrong? Am I to blame? So really acknowledging that and trying to discuss that with them is really important. I think also to be able to say, I wish we knew, I wish we could be better. And unfortunately we don’t know, but what we do know is what we can do from here. 

And so as much as we don’t know and acknowledging that we can help patients go from why did this happen to what can I do now? And I think that’s a shift. It takes time. You can’t do that in a 10 minute consultation, but over time, I think you can address it for some patients, the why me starts and then kind of dissipates for some, it stays really, really high. And I think part of that is because for example, for lung cancer, the easy example if you smoke, if you’re a smoker, well, many people who smoke don’t get cancer. We can’t blame an individual for their behavior. So it’s about really trying to reduce that stigma and blame to focus on, I wish we could better help and understand that where we can, what we can do. And sometimes reducing that uncertainty because we can never answer the question, why me? So there’s so much uncertainty in that. And there’s so much uncertainty in the cancer experience. So being able to focus on what we can know, what we can control and helping patients shift there as a medical team, I think is really important. 

Adrian Pogacian: You mentioned the consultation, like 10 minutes consultation. Of course, it is another amount of time where you can have a dialogue with the patient, but in the case of counseling or psycho-oncological intervention, there is this common question for our audience, what should I say or what shouldn’t say? It is this, what is called what to say when I don’t know what to say? It’s because also as specialists and also as caregivers of patients are moments when we don’t know what to say or how to say it. So which are the things that we should say or at least the things we should avoid to say to them? 

Patricia Parker: So I think that’s a big question. 

I think that it really depends on the individual. However, when you don’t know what to say, sometimes that silence can help to just allow people to integrate and to sometimes say, I wish I knew what to say. I wish I had a very good answer for you. 

And then letting people know that it’s hard to live with uncertainty about what your experience is going to be like, what the treatment is going to be like for you, all the other things that go with it. So part of it is eliciting. Sometimes it’s more important to listen and elicit trying to say, well, what’s important to you? What’s as opposed to let me tell you something. 

So I think that’s also important. I think something else, both for caregivers, family, and for clinicians is to really partner with patients. So I think one of the experiences that patients often say is they feel so alone in it, even when they’re surrounded. 

So really those partnership statements, knowing that you’re not alone, we’re a team, there’s a team around you, and we’re going to support you the very best we can in whatever that looks like, whether it’s treatment, whether it is quality of life issues, whether it’s whatever, counseling, whatever it may be. The other thing is really, it’s not only what you say, but it’s how you say it. So really focusing on what’s important to the patients, trying to understand their values, their goals, their preferences, and the amount possible trying to align what we’re doing, what treatments are with these goals. 

I’m going to come back a little bit to that concept of hope. And I think hope cannot just be about curing cancer. We wish we were all better at curing cancer, but we’re not. 

And we don’t know even if somebody hasn’t had cancer for 10 years, whether it will come back, right? But what we can do, there are a lot, there is a lot we can do. We can support patients. We can provide symptom relief. We can help them connect with other resources to the extent that they’re available. We can not abandon them. There are a lot of things that we can do. And there was an earlier study about 20 years ago now that looked at what patients considered hopeful. And it wasn’t just my cancer will be cured. It was that I’ll be supported, that my family will be taken care of, that I’m not abandoned. 

So there are a lot of other things that we can do as sometimes that we get in the mindset of cure, no cure, living, dying. And it’s so much more than that. So being able to really identify what you can do. 

Again, I always kind of come back to what can we do versus what can’t we? And that’s part of it. So I think it’s hard to give a clear recommendation in terms of what not to say, because it really depends on the patient. For example, if you’re talking about life expectancy, some patients want to know everything. They want the best estimate you can give them. They want numbers. They want data. Others either don’t want to know anything or want to know just the next step or want their family member to know. And so being able to provide that in a way that’s helpful. I mean, I think the basics are always true in that we don’t want to be disrespectful or dismissive of patients’ concerns. 

We want to normalize and validate that experience, that it is difficult for many people and not make assumptions about what people might experience. For some people, cancer near the end of life and not having treatments is actually a relief because they’re really suffering so much and dying is okay with them. For some, it’s terrifying. 

So not making assumptions of what anywhere along the trajectory of what they need, what’s important. So asking those questions. And I think as family members and supporters of cancer patients, it’s also about what can I do? This is so hard. 

We’re all going through this and really supporting them and supporting themselves because I think part of that is also supporting the family members, both during cancer and in bereavement. I went off a little bit there. I apologize. 

Adrian Pogacian: Yeah, it’s okay. And I want to ask because I have to ask this, especially for specialists these times, and then we come back to the patients. You mentioned that we always have to look further. 

I want to ask you from your expertise, when are you going to meet a new patient? Did you make yourself like a plan? I will go, I will meet this patient. I have this in my mind. I will talk about this disease or it’s just meet the patient and you just follow the, let’s say the conversation. 

Because with these specialists, it is these discussions. Some of them are with a plan. Some of them are going and see and adapt on the situation as it goes by. 

What is your opinion? How you do in these cases?  

Patricia Parker: So I think that it’s complex. I think it’s both. I think you always need to go into a consultation with a plan. This is what I hope to accomplish today. In our program, we really talk about declaring an agenda. This is what I hope to do in our meeting, but also inviting the patient or the family to say what they hope. Do they have a particular question or something that they want to make sure gets answered? If you invite them, then you know up front, this is some of the things that are important to them. And so then you can guide it. But if you, I think the clinician always needs to be in control of the conversation, but allowing enough flexibility that if, for example, someone’s not ready to talk about treatment, that there are other, you have an option. Can we do it a little bit later? Can we do it at a next visit? Sometimes those are options, sometimes they’re not. But being able to, if someone’s really, really, comes in really, really anxious or really scared, if you don’t address that emotion initially, you can’t carry on a consultation and have people understand what you’re going to be telling you. You’re not going to hear any of it. 

So sometimes you have to go in and say, okay, I plan to right away talk with them about the scan results and what’s going on. But they come in, they’re already so scared. I have to really address that emotion in the room first and then be able to see what they understand and then tell them the news. 

So I think there’s always a helpful structure and there are a lot of different approaches that can provide that structure, but being very responsive to the needs. And sometimes you have to say, I wish we could answer all of this right now. We may not be able to, but let’s come up with a plan so that you can get those additional things that you need or questions answered. 

Because we understand that everywhere we’re limited in time, we can’t necessarily do everything. Sometimes if we’re very targeted, especially if we invite the agenda or what’s important to the patient or family, it actually makes shorter consultations and more efficient consultations because we know upfront what, at least initially, what they’re coming in with that’s important to them. So it’s really about that balance. 

I think if you go in completely unstructured, you may not get anything accomplished for you or for the patient. But if you let them know, this is what I hope to do. And then ask along the way how patients feel. Are you ready to talk about blah, blah, blah. How about if we, I know this is a lot acknowledging that. I’d really like to talk about this if you feel ready. So having those questions, then you know you’re maximizing the visit in terms of the time and also helping the patient and family as much as you can. 

Adrian Pogacian: It is now, I can say, this thing of human touch. Everyone, especially when we are talking about digital interventions or artificial intelligence, everyone is mentioning this human touch. 

What about human touch? What about empathy? What about meaning of life? Human touch, in my opinion, is part of non-verbal communication. What is your opinion? We should use this, let’s say, concept of human touch. If yes, when? If not, what other non-verbal communications tools we should use in dealing with the patient’s problem? 

Patricia Parker : Well, that’s a great question. 

I mean, I think that so much of our communication is non-verbal. So we do need to pay attention to that. Non-verbal can be anything except for the content of what is said. 

So it can be pacing, not rushing through what you’re doing. It could be maintaining eye contact, sitting at eye level with a patient, trying to kind of reduce that, so much of that hierarchy so patients can feel comfortable to ask questions, for example. I think also in terms of, you know, actually physically touching someone, it really depends on the patient and the clinician. 

If a clinician is comfortable with that and a patient seems receptive, you may put your hand on their arm or on their, you know, knee, whatever, shoulder, you know, in a way. Some patients will really appreciate that, some won’t. For clinicians who are not comfortable, I say you don’t have to touch someone to really show your empathy. 

What you can do is sometimes move your chair a little closer, lean in, do some things to really show I’m here, I care, and I’m focused on you right now. Also in terms of tone, I think having a compassionate but direct tone is really important in paying attention to that. Some, you know, I think often we tend to speed through things because we’re trying to maximize getting everything done and sometimes we have to slow down a little bit because getting everything done, if patients don’t walk away with anything, doesn’t help us, doesn’t get them or us any further along. 

So it’s about really focusing sometimes. What’s most important thing that I need to accomplish in here and making sure we do that. And if you go off tracks in terms of your previous comment about staying in control, if you go off track, say, you know, what you’re saying is really important and I want to make sure that we have time to cover this. 

So would it be okay if we do that? That still gives control to the clinician, but it’s very respectful. I mean, you need to have control of a conversation while at the same time, including the patient and the family in that, because if control doesn’t mean only doing what I want to do, it means making sure that our goals and our shared goals for your care are covered.  

Adrian Pogacian  : You mentioned a direct tone.  This take me to the idea of another debating issues nowadays within clinicians, hard conversation. Everyone’s talking. 

Patricia Parker : What kind of conversation?  

Adrian Pogacian: Hard conversations.  Okay. Right. So now, especially also in Romania, everybody said that, you know, there are moments in counseling when we should have this hard conversation in a context that at some time we just have to tell the patient the truth about his illness.  But in a manner that you said that to remain respectful, to be respectful, to be compassionate. Are you a fan of hard conversations to put it this way, or you prefer other way of telling the news or telling the truth about the patient’s illness?  

Patricia Parker: I am in favor of telling the truth and talking in clear terms. That doesn’t mean you necessarily have to go through everything in every, you know, minute detail, but in also asking, asking them what they’d like to know. 

You know, we’re going to talk about some difficult stuff today. How much would you like to know about it? You know, would you like an overview and kind of what you need to do next, or would you like a lot of details? And then you can use that. I am not in favor of, you know, typically kind of collusion and pretending that it’s not happening because most of the time you have patients trying to protect their family, family trying to protect their patient, and everybody knows what’s going on. 

We don’t speak it because it’s hard and we’re trying to protect. It comes from a good place. I think for everyone, because we don’t want to hurt each other, but this is tough stuff that is going to happen likely. 

And so, talking about it, but talking about it with empathy, talking about it in a way that it can be heard and not necessarily kind of doing it in a staged way. So, you don’t, in a first visit, you don’t have to talk about everything about what to expect now, all the side effects they’re going to have, what their prognosis is, what they should do about their end-of-life planning. You know, obviously we don’t have to do all that. 

If they ask, we may need to provide a little bit of that. If they don’t, and again, it depends on if somebody comes in with an advanced gastric cancer, you might have to, you know, speed that up. If somebody comes in with an early-stage breast cancer, you have a little bit more time. 

I do think it’s helpful early on to talk about what to expect in a, you know, best case scenario, worst case scenario, maybe not in a lot of detail so that people know what that might be. So that when you get there, it’s not a shock, right? That they at least know that it was possible and you’ve already touched the topic. So, it makes it a little bit easier to bring up. 

Adrian Pogacian: Yes, and it is very important because nowadays, as you said, there are a lot of patients I saw that are using this right not to know. I don’t know, want to know further. I just want to have a talk, discussions just to, I don’t know, to feel better, to feel support, to feel that somebody is near with me. 

So, it depends very much on the patient needs from what are his, her expectation from these discussions and above all about his, how he or she sees the life.  

Patricia Parker: Yes, I will say if someone says, I don’t want to know anything, I think it’s helpful to explore that a little bit to try to understand it, especially if you’re talking about in a psychotherapy kind of setting or other kind of setting, but even for oncology, oncologists and other folks, because sometimes it’s about fear. Some of that fear can be lessened by having some information. 

Sometimes it’s based on things that isn’t accurate. For example, I’m going to die anyway, so why should I know? I’m just going to go through whatever. So, trying to understand that perspective and know that it can also change over time. 

So sometimes people come in and they want to know. Sometimes as disease progresses, they may want to know less or different things. So, checking in periodically is really important and not making assumptions of what people want to know and don’t want to know, because sometimes we’re wrong, even when we know patients well. 

Adrian Pogacian: It is what is called do not judge the patient because sometimes involuntary, not voluntary, we are tempted to make assumptions, to judge, put ourselves in their position and it’s not good, neither for us or neither for patients. Dr. Parker, thank you very much for accepting my invitation. Thank you very much for these discussions, very important in the context of cancer care, and good luck further on your activity at MSK. 

Patricia Parker: Thank you so much. It was my pleasure. It’s a really important topic that I’d love to talk about.