By Danielle Derbenti
On October 26, 2021, Blue Note Therapeutics Patient Advisor Karen Peterson was joined by clinical experts from Loyola University Chicago Dr. Patricia Robinson and Dr. Sarah Thilges, Prisma Health Cancer Institute Kerri Susko and Gina Franco, and Blue Note Patient Advisor and Breast Cancer Patient Navigator Zhonnet “Z” Harper to discuss delivering psycho-oncology resources in a community clinic setting.
View a video recording of the panel or read the transcript below.
This transcript has been edited for clarity and accuracy.
KAREN PETERSON: Good afternoon, everyone. Welcome to Blue Note Therapeutics’ interactive webinar discussion on expanding the reach of psycho-oncology, delivering care in a community clinic setting. I’m Karen Peterson, the Founder and Chief Patient Advocate of Karen’s Club, a platform that helps educate, support, and inform patients of color around clinical trials. I’m also a Blue Note Patient Advisor and, more importantly, I am the moderator for today’s very interesting discussion. But before we begin this discussion, I have a few housekeeping rules. First, I want everyone to know that everyone who is participating in this conversation today is going to be on mute. Secondly, if you have any questions, please put your questions in the Q&A. Later, we’ll pull up the questions and give the panelists a chance to answer all of the questions in the chat. So I’m glad we’re all here today. We have a wonderful panel of experts. And so I’m going to ask them all to introduce themselves. First, we’re going to begin with Gina Franco. Gina, it’s so nice to see you today. How are you doing?
GINA FRANCO: I’m doing fine. Greetings from South Carolina. I’m Gina Franco. I am at the Prisma Health Cancer Institute. I’m the director of the Center for Integrative Oncology and Survivorship, and the Center for Cancer Prevention and Wellness. I’ve been here since 2012 and I’m also an oncology nurse practitioner. I’ve practiced oncology literally my whole life since 1981. I am also the Chair of the Clinical Services Committee of the Cancer Care Committee here which oversees our whole distress program. We’re a fairly large survivorship program; we see about 10,000 visits annually and we are the largest cancer program in the state of South Carolina. Greetings, everybody.
KAREN PETERSON: Thank you so much for joining us today. And next we have Zhonnet “Z” Harper.
ZHONNET “Z” HARPER: Hello, everyone. My name is Zhonnet Harper everyone just calls me “Z”. I’m a nonclinical Breast Cancer Navigator at a safety-net integrated hospital in the Oakland, California Alameda Health System. Our focus is primarily on the social determinants of health, as those are usually the biggest barriers to care. I’m also the current Chair of the Alameda County Public Health Commission and I am also a Community Navigator and Cancer Navigator with Umoja Health.
KAREN PETERSON: Thank you so much for that introduction. And next we have Dr. Patricia Robinson. Welcome, Dr. Robinson.
DR. PATRICIA ROBINSON: Thanks for having me and greetings from Chicago. I am Patricia Robinson. I’m a medical oncologist at Loyola University Chicago, and I practice out of the Cardinal Bernardin Cancer Center. My practice is predominantly breast based, but I do serve as the director of our cancer survivorship program. We recently expanded it to a multidisciplinary approach to make it a more comprehensive program for our cancer survivors. I also serve as an Assistant Dean in the Stritch School of Medicine and the Office of Diversity Equity and Inclusion, as it relates to DEI issues for our residents and fellows.
KAREN PETERSON: Thank you so much for that introduction. Next, we have Kerri Susko. Hi, Kerri, good to see you.
KERRI SUSKO: Karen, thank you so much for having me today. Hi to everyone. I’m a clinical social worker. I work at Prisma Health in the Center for Integrative Oncology and Survivorship. I’ve been here and in South Carolina for about nine years and in the oncology field for about 15. I provide individual counseling to our survivors, both patient survivors and family members. I’m also our Director of the Cancer Support Community at Prisma Health Cancer Institute. And I’m also on the Scientific Leadership Board of the GO2 Foundation. And I’m very happy to be here today.
KAREN PETERSON: Thank you so much. And last we have Dr. Sarah Thilges. Hi, Dr. Thilges. Nice to see you.
DR. SARAH THILGES: Hello, nice to see everyone. Hi, I’m Sarah Thilges. I am a clinical health psychologist also at Loyola University Medical Center. I see patients during all aspects of the cancer experience—new diagnosis throughout treatment into survivorship. I also do research related to supportive care quality of life as impacted by the cancer experience. I’m also an Associate Professor within Loyola University and help with the graduate students, medical students, and residents to educate them on the mental health impact of the cancer experience. So glad to be here.
KAREN PETERSON: Okay, let’s get directly into this conversation about expanding the reach of psycho-oncology and what the challenges could be for delivering care in a community clinic setting. The first question I have is, large healthcare systems have resources that community clinics don’t have. We all know this. Can you talk about what that’s like? And what the barriers could be to preventing psycho-oncology care in the community setting. What are the challenges for a small clinic and how does that affect your practice? Dr. Thilges, would you like to take that question?
DR. SARAH THILGES: Sure. I think what’s interesting, and what I value about our work we do at Loyola is that although we are a large academic medical center, we serve a pretty unique population. And so I think because of that, a lot of patients consider us their community hospital, and they’re kind of not aware of everything behind it. They just know that’s where their doctor is. And as I’m sure will come up with survivorship, often an oncologist, a hematologist are patients’ primary medical providers, and so I think the struggle is how to launch patients into care beyond their cancer care. But here at Loyola because of where we’re positioned geographically, we actually serve a pretty large rural community over into Iowa, up into Wisconsin, some rural Illinois, and then being in Maywood, where we’re located is actually kind of a lower income, lower resourced community where Loyola does serve as the hub. Often when patients come in, one of the advantages we have of being an academic medical center is we can connect them with social work to help with financial housing and insurance resources. We can connect people with mental health resources and, potentially, these are people who have had mental health needs before cancer, but just have never had the resources, the connection, the ability to seek out mental health care. And so we do kind of become the home to the community within our academic medical center. But I realized, you know, Dr. Robinson and I are fortunate to have a whole team that we can connect patients to and we can work with each other. And so I know some of the smaller community centers are limited. And I think what we often hear with mental health is people say, “Well, I’m scared. If I ask, they’ll say, yes. Yes, I am depressed. Yes, I am anxious. Yes, I am suicidal, and then I won’t know what to do with it.” And so I think that often comes up in the community setting. And so I’d be curious what other people’s experiences are with that, given some of the advantages Dr. Robinson and I have being able to collaborate.
KAREN PETERSON: Gina, do you want to tackle this question?
GINA FRANCO: Yeah, we have a bit of diversity where we are because we are in a larger hospital. But we have nine different offices that are in outlying areas, and two of them are federally designated, low-income areas. So we’ve really had to leverage some online resources, as well as our whole cancer support community. And so we use a lot of that networking to help as well. I don’t think anybody really has the exact utopia of psychosocial support. Right now mental health is changing. There are shortages, whether you’re large or small. So it’s really taking what you have as your stakeholders in your area, what you have as your resources, and then trying to maximize the utilization of them. So for us, it’s really utilizing our national membership in the cancer support community that has really helped us. But then it also is, because of COVID, we have used this ability for patients that didn’t really want to be virtual, or do some of these virtual things, they kind of have been forced to learn this. Most people have smartphones, even though they may not have a computer. So we have used that for our activities. And we have people in their 80s and 90s that are participating in virtual events that we never thought we would see at all. So it’s changed because of the times. And we’re leveraging what we have.
KAREN PETERSON: Leveraging what you have, and you also mentioned stakeholders…that brings me to my second question: which stakeholders must be aligned to get this type of care off the ground? Z, I want to definitely bring you into the conversation because I know you know, as a patient advocate in the community, that many are underserved. What are your thoughts on what stakeholders have to be aligned in order to get psycho-oncology off the ground in a community setting?
ZHONNET “Z” HARPER: Well, the stakeholders that have to be aligned are the patients and their families themselves, number one. I think that a lot of times it’s unintentional, but it has a very adverse impact when we treat a patient as solely a patient. And we don’t see beyond the disease; we don’t see beyond their particular plight. A lot of these patients, especially my patients, coming from a safety-net integrated hospital system, the majority of my patients are people of color. Socio-economically they are on the lower rungs. But their experience within these systems, this phrase “safety-net system” is where the solutions lie. This is not a job that requires a hero. It requires a partnership. And I’ve learned my lessons from my patients; my patients actually teach me and I follow the course that they chart, depending upon what their experiences are, what their expectations are, what the failings of the systems are. I proceed from that perspective and their approach is to position our patients and their families as those that help what it is we do and not just the center. Because sometimes the center is not enough. So that’s the approach that I would definitely recommend. I would also look at not just established CBOs, but emergent CBOs because, oftentimes, that’s where a lot of the innovation and a lot of the thought leadership lives, and it’s not necessarily within institutions that we’re more comfortable working with. For example, most of our stakeholders beyond the patients are county. Well, as most county systems, we’re already overburdened and overtaxed. So we’re tapping into another under-resourced resource. So now what do you do? So we really have to think about the expanse of who is a stakeholder? What is truly a resource from the patient and the family’s perspective, and not in terms of just operationalizing what it is that we can’t do as institutions, and I think we’ll be well on our way.
KAREN PETERSON: Thank you for that answer. Dr. Robinson, I’m curious what you think about this. From the doctor’s perspective, what stakeholders have to be aligned for you?
DR. PATRICIA ROBINSON: Yes, I have a couple of thoughts on this. Just because we, oftentimes at the academic centers, look at our practice from the academic scope, which is so research oriented. But I attended a program where the Secretary of the Smithsonian Lonnie Bunch said something that really resonated with me that I want to share, which is that academic centers are not community centers, but they are the centers of their community. And so whenever you think about the resources, or the programming that you have in place, you should really be thinking beyond the scope of who are the people that actually come and utilize you, but actually, who is in your community in your catchment area to make sure that you are servicing them also. So when I think about our key stakeholders, I really think it’s everybody. It’s everybody because you’re trying to develop a culture within your workplace in which people can feel comfortable coming, expressing themselves, and tapping into the available resources. And I would agree with Gina in that no matter where you practice, it always comes down to two things: sweat equity and financial equity. So you may have a whole bunch of people who are working on a project, but with no money, right? They tell you, we don’t have any money to give you, there’s no budget. Or they may tell you, here’s your money to make this program happen. And it’s two people, the office has two people in it, to make it happen. And I think that’s a common theme no matter where you practice, that we’re all trying to struggle with the sweat equity and the financial equity that goes into these programs. But the bottom line is they are critical to oncology care, and we have to provide this for our patient.
KAREN PETERSON: Dr. Thilges, did you want to add anything to this conversation? Or do you want to move on to the next question? I feel like this question is really rich; we could be on this topic for another hour. I just want to give you a chance before we move on?
DR. SARAH THILGES: Sure. I’m a little nervous following those two because I thought they did such a good job tackling the question. But yeah, I love the idea of the patients being the anchor of what we need. And I think that’s where, again, research is so important. And I love that there’s now more focus on patient-informed research where you start with, is this really a problem where so often, I think it used to be top-down. We think this is a problem. We want to compare these two solutions that we think are going to fix this problem. And then we’ll see which of our solutions is better. And so I really love the idea of starting with, what do patients think is the problem, what has affected them? And so using their experiences to ground all the endeavors of your center.
KAREN PETERSON: Thank you so much for that. What are some of the different types of stressors that you see patients dealing with in a community clinic setting? Kerri, what are you seeing now, especially since COVID-19, because I know things have probably changed a lot with that?
KERRI SUSKO: Well, it’s interesting we’re talking about cancer patients and I want to mention something that Z said earlier, which is like beyond the disease, because I think oftentimes, the layperson might think that the biggest stressor in a person’s life is having a cancer diagnosis. But those individuals are dealing with all the stressors we deal with, like COVID and our society and finances and messages that they’ve had for their entire life, and then you add the layer of cancer on top of that. So I think just that overwhelming feeling, and although we all suffer and none of us likes to suffer, we don’t like the feeling of being sort of in that quicksand. And I think the biggest sort of stressor for many people is flailing around and trying to figure out how do I get out of this. And I think that our centers, when we’re looking at the whole person and not just the cancer diagnosis, really help with using that maybe a little bit. We’re helping people get in the right direction of easing that.
The other thing is that high stress often comes not from an initial diagnosis, but after people are through the active treatment. And they think that is a huge stressor because they’re sort of surprised. They think, after I go through my treatment, I’m going to get to the other side, and return to my proverbial normal life. And for many patients that isn’t the case. And it’s often the time when they are processing what has happened and their feelings to a much greater degree. So their expectation of it being calmer and being in a more positive place often is at the other extreme, which is difficult and stressful. And then you have the family members who also sort of expected that. Great, you’re through treatment, you’re a survivor, we can go on now. There really isn’t an understanding of the adverse effects, both emotionally and physically, that are still present. And I see that as one of the biggest stressors that individuals face is dealing with those adverse effects. It may not be the actual cancer diagnosis, the cancer might no longer be present, or may be in remission, but the adverse effects, whether that’s cognitive impairment, or fatigue, or neuropathy, or whether it’s just not feeling like oneself and not being able to do the things that they previously enjoyed. I think that’s a huge, huge stressor.
I mean, I could go on for hours but I won’t. It can be overwhelming for us just to hear that I can list off this litany of stressors that we all do have. And another one is being able to stay in the present, because maybe the biggest stressor for people is the fact of feeling like they’re losing control. And although that may just be a thought, because we never lose full control, that feeling is really compelling. That thought is very difficult. So being able to stay in the present, the only place that we do have any control is difficult. But I do want to say that I remember when I came to South Carolina initially, and one of the physicians was asked, “Why did you go into this field?” It can be very heart wrenching and difficult. And he said, “Because patients often become their best selves after a diagnosis.” And I think that is very true; I think that we have a window of opportunity for people to explore things that before they weren’t really open to. A cancer diagnosis makes them look, their perspective becomes different, and maybe things that they were complacent with, or weren’t really happy with become something that they are now more open and receptive to exploring. So I think that he was absolutely right in that it’s a positive regardless of this great stress that they’re under.
KAREN PETERSON: Z, I’m sitting here and I’m thinking about it from the patient perspective, because I know you deal daily with patients, and you see, feel, and hear all their stressors. Talk to us about that.
ZHONNET “Z” HARPER: Yeah, and again, a lot of the stressors are cultural. Again, I’m in a very diverse populace. My patients are from immigrant backgrounds. They have different cultural practices, cultural beliefs, and there are stressors that are directly related. If you have a patient that might be from a culture that is male dominated, a lot of times the wife or the significant other, they can’t even go into the examination room independent of their husband or significant other. So that can be a stressor because they have no way in which to communicate what’s going on, just woman to woman or woman to physician and figure those things out based on who they are as a woman. Okay, so that’s a source of diminishment. Then there’s also the issue of race, quite frankly. I have to deal with earned distrust of the medical system, oftentimes, especially as it relates to issues of care, and wondering, “Am I getting the same care that someone else would get?” How do you address that stressor? So there are a myriad of stressors that you have to be aware of. And you drive yourself crazy trying to prepare for each individual stressor.
So you just see the whole person. If you see the whole person as they present themselves, then you’re in a position where you can deal and help them through their individual stressors, not their racial, not their ethnic, not their cultural stressors, you’re cognizant of it. You’re respectful, you prioritize, but it’s according to who they are as an individual. And that’s one thing that I’ve really learned, and I’ve tried to remain focused on. I always tell people, I don’t navigate cancer, I navigate life. So whatever way in which my my patients present themselves and their life, that’s the way I navigate them and their families, because you it will get to a point where you’re responding, or you run the risk of responding to things that are politically correct, that are wonkish, that are policy prescriptions, and a lot of times that has nothing to do with them. My patient population would be lucky if they were even represented in half of those conversations.
So that’s what I was saying. Sometimes your patients aren’t even aware of what the stress is until the stress occurs because this is a journey and it’s ever changing and it’s evolving. So I will say, just try to be present for your patient at all times. Remember that they tell us; we don’t tell them. And try to help them through it as best we can. And be aware of your own stressors as someone who provides care and tries to provide guidance and directions, because if you don’t take on some of that stress, whether it’s inadvertent or not, then to me you’re not like this. The day I get to the point where I don’t feel my patient’s pain, then I need to stop doing this job. That’s just the way I feel about it. And so we have to be cognizant of our own stressors in this work.
KAREN PETERSON: Thank you so much for that. Gina, I have a question for you. Can you address the stigma that patients may feel when they need additional resources? Is it difficult for patients to say, “I need more help than you’re already giving me?”
GINA FRANCO: Back it up one second back to what Z said, because the challenge is that now we’re moving to more virtual visits. And so meeting patients where they’re at is becoming even more challenging, because you just have to assess things. And we just have very limited tools when we’re doing this. So when we do these virtual visits, and we’re seeing patients and they’re not in person, although you get to see some home situations you might not have been able to before. I’ve done virtual visits with people sitting in their truck, in between their work, and then you realize they’re still working, and they’re in between there, and they’re on treatment. But then there’s this other thing that we call survivorship guilt. And guilt can be manifested in many different ways. But one of them is that, you know, we think we’re helping by giving all these resources, we might even give you some financial resources, connect them to services. And then there’s this piece of patients that will feel like they’re really not helped, that wasn’t they needed, but they feel guilty that they’ve already used some of these services, and are they using them for someone else, or they’ve been through all of this treatment, and then they still are having worry, or some kind of psychological warfare in their head. And they don’t know how to attend to that because their family has already taken care of them all through their treatment. They’ve missed work. And so they’re like I just got to get on with my life because everybody’s been taking care of me this whole time.
So there’s this piece where we have to empower people, and figure out how to meet them where they’re at. As Z says, you really got to figure out each person, their backgrounds are all varied, but backgrounds are varied no matter who you are. I can’t relate to an 80-year-old; I’m not 80. So you’ve got to figure out and listen. You have to listen and then you have to give feedback and then you have to follow up because if you did all these things, and then you don’t know if they helped by either following up or having someone else follow up if you can’t. One of the best things I’ve found is I’ll say on a scale of zero to 10, “How confident are you that you will carry out our plan today?” And if it’s a six, I’m worried. And then you know, maybe my next question would be, “How do I get to a seven? What would make this a SEVEN today? Or what do you think you can’t do on the list that we just gave you?” Because I was assuming I knew what that person needed. And that’s the biggest thing right there as I shouldn’t have assumed I should have asked her feedback. I should listen and then have them tell me what they think they can do.
KAREN PETERSON: I think that’s so powerful, never to assume that you know, and that’s really important to involve the patient and really listen. Dr. Robinson, when patients hear about cancer-related distress or offered psychosocial care, are the patients always receptive? Or do you meet resistance and skepticism?
DR. PATRICIA ROBINSON: So no, patients are not always receptive and there’s probably a stigma that’s associated with it. I’ve heard after the suggestion is made, “Would you like to see a psychologist?” People say things like, “No, I’m not crazy.” That wasn’t implied in the question and that’s not what I meant, but that’s how they heard it. Or they immediately tell you who their support team is, not recognizing that sometimes they’re—not sometimes, I would say oftentimes—it’s not always a benefit to having your support team include somebody who you don’t have a relationship with, or the expectation of a family member. People will say their church or their pastor, which is fine, but they kind of come with a concept of what support should look like and what it looks like for them. So I can tell you that my pitch on the service has changed over time. I agree with the other speakers that the cancer experience is a kinetic one. So it is always changing. And where you are in your headspace may not be the same as one month prior to diagnosis, one month after diagnosis, a year after diagnosis. So I try now early and often to reinforce the concept of your team and your team goes beyond your medical oncologist or your radiation oncologist and your surgeon. It is the cross-cutting issues and ancillary services, like nutrition, physical therapy, psychology. And I really feel like it’s less threatening for people to hear within the same sentence, nutritionists and psychologists; there’s less stigma with that. It’s just along the lines of this is part of supportive oncology. And I think that people, again, feel less threatened by it. I don’t have any statistics to say that they are more likely to take me up on the suggestion for the referral, but I do now make it earlier and often in the consultation in our relationships, just trying to build a culture in which people feel comfortable, being able to express really what’s going on with them and being receptive to the recommendations.
LAURA CHAVAREE (the Q&A off-screen moderator): Karen, we have a question along these lines asking which roles in an integrated care team are patients most likely to share their level of distress with? And what are the characteristics of this person in your institutions?
KAREN PETERSON: Who wants to tackle that question? Okay, Z.
ZHONNET “Z” HARPER: Our institution and the institutions I work with, it will be someone like myself, the navigator, or a case manager, or a social worker, someone within that role, because it’s our responsibility to assist the patient. And one thing that I think we can focus in on more, as just the industry of care, is care. And that is relational. It’s not operational, it’s not an intake, it’s an investment. You invest in the people that you care for. And that investment is making sure that you’re attentive, and that you’re ever-present when you are present, and that you’re compassionate, and that you’re all the things that we don’t get when they’re taking our blood pressure. There’s a difference between care and treatment. And the role that we hold is to provide the care. My patients respond to care all day long, and will seek you out to receive care, oftentimes before treatment, because that treatment might involve some pain that might involve receiving chemotherapy, whereas that care might be a hug and asking, “How you doing? How’s your family? What do you need, sweetheart?” Oh, my God, hold their hands. So those are the kinds of things that oftentimes provide the comfort that the patients and their families often don’t just need, but will actively seek. And once that starts to happen, they will tell you—oftentimes you won’t even have to ask—what is going on with them, what kind of help they may need, what type of emotions they may be experiencing. What’s going on in the family? I mean, it’s just an awesome responsibility, but it’s beautiful. I don’t want to say challenging, because it’s not a challenge, it’s an awesome and beautiful responsibility, and a blessing at the same time. I’m blessed by the Insight my patients provide me and our hope that they feel blessed by the comfort I try to provide them. And you know, there’s no designated role, as far as I’m concerned. That’s a commitment that any and all of us can make and partake of, it’s not about a role. It’s about what it is we bring to our patients when we see our patients. And it’s something we all can do. Every last one of us, we are empowered to do that. And so it’s not institutional. It’s just something we share.
DR. SARAH THILGES: If I can follow up on what you said, Z, about roles, you know, whose role is what, I think that has to do with the original question about the stigma as well. I think patients sometimes struggle with, “Oh, this is my oncologist. I don’t talk to them about this.” And this being the fact that I have food insecurity, this being the fact that I’m facing eviction, this being the fact that I have this trauma history. And so I think one of the biggest things any institution can do is just create a culture of care, like Z was saying, that it’s not a single person’s role. You don’t have to have a psychologist or social worker on staff; I think every team knows that one empathic nurse, PCT, but anybody can create a culture of care. There’s a program called Mental Health First Aid, and it’s similar to medical first aid with teaching people how to recognize, intervene, and respond to mental health crises. And I like the premise of it in that we can all do something, even if it’s just asking somebody if they’re okay. And so as far as whose role it is, I think it’s anybody’s role. And I know that some of what the distress screening initiatives are trying to capture is the same way that we assess pain, nausea, fatigue, the side effects of cancer and treatment, we can also assess depression, anxiety, trauma, demoralisation as side effects as well. And I think any of us can ask about that.
ZHONNET “Z” HARPER: And I just want to follow up one quick moment behind that comment, because it’s like, totally right on, I think that the more we work to address defined roles, it removes the stigma. Because what’ll happen is it helps the patient feel cared for no matter where they are. Oftentimes, if a patient doesn’t feel comfortable saying something to an oncologist, and there is no one else to speak to, then that’s a barrier to care, because now we don’t know what’s going on. Whereas when we’re all asking, and we’re all showing that same level of concern at each touchpoint, it helps to remove that stigma and it also helps remove that judgment. Because oftentimes, patients are afraid they’ll be judged, especially when you’re dealing in secondary integrated systems. So we really were focused in on creating a culture of care at my institution, so thank you for that.
KAREN PETERSON: I just think it’s interesting because I feel like at the community clinic center is where there’s often a lack of resources. It’d be good to have a designated team or designated person who’s specifically there for psycho-oncology. What do you think about that, Dr. Robinson?
DR. PATRICIA ROBINSON: So I think that would be great. Whenever I have to attend the inpatient service, I always ask Dr. Childress if she wants to come and do rounds with us to just grab her because I feel like everybody needs somebody to come back afterwards to just ask them how they are doing today. What are the barriers? How are you doing? How can we make this better? Everybody needs that. So you’re right. Having a designated role would be great, but I think the reality is the resource. And going back to kind of the overshadow of how COVID has impacted us, so much of what Z was saying, that comfort, that handhold, that hug, that arm of reassurance was taken out of the equation for over a year. For me personally, it was very challenging to do tele visits; you kind of lost the essence beyond the rote conversations of well, how are you today, any pain today, because you weren’t in the same room with people using the facial expression, the resolution wasn’t good enough to really get a sense of were they digesting what was going on. And were they really telling you what was going on with them. But that being said, I think having a dedicated person would be great, and should be something that every institution should petition for if they don’t have that person. And I would say corollary to that, every institution probably needs to have a patient advocate, or have input from the patient experience, so that the institution’s last hospital really knows the needs of their patient population, and not just expect and maybe expect, erroneously.
KAREN PETERSON: Thank you so much for the answer. I appreciate that. Dr. Thilges, I want to know from you what was surprisingly easy about setting up your clinic?
DR. SARAH THILGES: This should come easier. I’m trying to think about what was easy.
KAREN PETERSON: If it’s nothing easy, that’s a point we can also discuss.
DR. SARAH THILGES: It is really challenging. I mean, luckily, the recognition of distress and cancer is not new. I think a couple decades ago, we had to fight for that to even be acknowledged, right? Because it was, you should just be glad to be alive, you should focus on being alive, staying alive. And that’s it, and no ifs, ands, or buts about it. So I think obviously, we’ve moved beyond that. I think what surprises me is the people that take to supportive care that I didn’t expect to. What’s easier is, once you get people in the door to get buy-in. So somebody will walk in, referred by Dr. Robinson, because they said, especially on the inpatient service, these aren’t people who are making an appointment, there are people in the hospital, I’m coming to them. And after they ask, “Is this because Dr. Robinson thinks I’m crazy, or is this because Dr. Robinson thinks I’m dying?” Then we get into what’s going on. But people take to supportive care in ways that really surprises me and constantly reminds me to not make assumptions about what somebody’s experience is going to be or what their insights are going to be. I have patients in their 80s that are seeing me because of their cancer, but we’re processing childhood trauma that happened 70 years ago, that they had prepared to go to their grave with these experiences. And that, in turn, allowed them to reconcile with a child they were not able to have a good relationship with. And so these really incredible things happen. So I guess the easiest thing has been that once we do the work of getting somebody in the door, that patients need and thrive with having their emotional needs be met, I guess.
KAREN PETERSON: Kerri, I have a question for you: have clinically validated interventions made their way into your practice? And do these interventions help you meet the quality standards that you have?
KERRI SUSKO: Yeah, I think, well, certainly the Commission on Cancer has played a vital role in mandating social and emotional programming. I think that we always strive for best practices. But that does come back to, how much do those best practices cost the healthcare system? But I think that we are definitely looking at best care practices as our standard, and I think that the collaboration is getting a lot better between healthcare systems and centers of excellence and I think there are more organizations where there is more of a camaraderie than a competition. And therefore, across the country, there’s getting to be increased best practices, especially with social and emotional programming. And I’m looking forward to that continuing and growing.
LAURA CHAVAREE (the Q&A off-screen moderator): And we have another question along those lines in the Q&A. So along the lines of clinically validated interventions for cancer-related distress, can you also speak to the difference between a “regular therapist” versus someone who’s specifically versed in psycho-oncology?
KERRI SUSKO: I think that there are some significant universal issues that cancer patients experience and if you are not familiar with those, you know, fear of recurrence, for example, or caregiver distress, or someone mentioned earlier survivorship guilt, or the stigma around cancer. I think that if you’re not familiar with those, it makes it very difficult to address what’s going on in the now, meaning I think regular therapists who have not practiced in the oncology realm oftentimes don’t give tools, don’t give techniques to really address these things that are going on that people need so urgently to find some ease in. So I think that’s the biggest difference that we see sort of the urgency of getting out of that most distressing place and getting a little ease, to figure out how you can move forward.
KAREN PETERSON: Moving forward, it’s interesting that you use that word because I was sitting here looking at this question in the Q&A, and it says it’s imperative. How do we inform those who have completed treatment about the resources for psycho-oncology support that may have withheld their mental health concerns during treatment? So moving forward, you’ve completed treatment, and you are thinking about getting support, which you may have withheld, like your mental health stresses or your barriers or issues trying to access mental health while you were going through treatment. But now that you’re out of treatment, you want to move forward and you want to participate in treatment. How do you follow up with that? How does the psycho-oncology support follow up with that? Gina, do you want to take that question?
GINA FRANCO: I do, there’s lots of things. I want to back up one more time, though, because I really do like what Kerri said. And I also want to say that the world is changing into this now more multidisciplinary environment, and it really doesn’t matter the size. We’re recognizing that the physician, nurse, or medical assistant in the oncology offices is just inept at many levels. And we need the whole care team, whether it’s navigation, nurse, social workers, chaplain, that it’s got to be part of a team. The team can be virtual, it’s not like you have to have that team in every office. But that is part of evidence-based care in the sense that we’re relying on that for people that are highly distressed, more of a relationship between the whole staff to help manage patients is needed so that they can learn from one another. This is one of the biggest things I learned when I started working with a social worker that was embedded in our department. There were things I didn’t do well, and I just didn’t have the background. I was trained to treat acute care; I was trained to treat if he had sepsis. If he had a DVT, I knew what to do. If he came in and said, “I saw the gun. And I didn’t know what to do with that gun.” He was thinking about it and like, I don’t know, what is that, ideation? Is that something you should act on? And then you look in these policy books and you’re just like, well, you can’t leave the patient and we’re supposed to go to the next room. Well, the reality is productivity lives in oncology, whether we want to talk about it or not. So it’s learned to also depend on this whole multidisciplinary care model that hopefully exists in most places today at some level.
KAREN PETERSON: I think I’m a little passionate here, but back to my point and those community clinics that don’t have those resources, and the doctor may not be well-versed at identifying ideation or identifying whether or not a patient is under stress, then what do you do? I think that there should definitely be someone who’s designated to be able to sort of seek the patient out and be able to embrace the patient and bring them in and be able to come to the patient instead of the patient looking out there for resources. But that’s just my passion when it comes to this.
GINA FRANCO: Well, it is and mental health care needs to be at the forefront. It is as important as the medical care of that person. And so we do need to look at how we scale resources when we don’t have them in the small communities, and we have this thing called the internet. And people have smartphones, they have ways to connect, we just have to get a little smarter on how we can do this. So that we can connect things that are evidence-based. It’s not going to replace a person, but a lot of times we can leverage those resources, even if it’s not in person. But we can’t continue to rely on the nurse, physician, medical assistant model and oncology. It’s got to be this whole model, whether it’s in person, virtual, you name it, it is changing. And it’s just slower in the change when you get to the rural communities that are underserved. And I forgot even what your other question was.
KAREN PETERSON: It’s all right. I probably forgot that question, too. I’m so engrossed in this conversation. Let me move on to a question that I see in the chat. Does the treatment of psychosocial stress or the provisions of psychosocial care improve a patient’s health or improve the impact of their cancer treatment? I see Dr. Thilges, shaking her head.
DR. SARAH THILGES: So I realize the scope of this panel, but this is where I think our first question was about stakeholders, and looking at the role of mental health in the outcomes that the powers that be used to designate where finances go and what gets money and what doesn’t. So we know mental health care is always underfunded, it’s under-resourced. Always. Because it is not seen as, by the powers that make decisions, the money-maker like surgery, or we don’t look at the direct impact of days of hospitalization, things like that. But I think that’s where really, institutionally, and I mean that institution like global health care, we need to look at the role of depression on non-adherence and medications and poor outcomes. We need to look at the people who are in the hospital longer because they’re not eating because they’re depressed. We need to look at the people that are struggling with domestic violence at home and don’t have a caregiver who can help with the dreams that we send them home with.
Somebody mentioned talking during a virtual visit in between shifts, of somebody working, so somebody who’s exposed to a workplace that’s not conducive to someone who’s immunosuppressed during chemotherapy, and thus, they have more infections. So absolutely, we need to look at how these variables that traditionally are not seen as well-conducted or well-resourced, the impact they have on these things that do matter to Medicare funding, and all these things that institutions rely on to fund their centers. And show me a domain and I’ll tell you a way mental health impacts that. And so I think we all need to take a larger look at how that matters. And that might help with paying a social worker who could help with people attending appointments, being more adherent to medication regimens, and thus having better outcomes. And I would argue the cost of that social worker is far less than the amount, even if we have to look at this financially, than the amount that comes in from patients being better able to engage in care and having better outcomes.
KAREN PETERSON: Thank you, doctor. I’ve got a question in the Q&A, and it’s from a patient advocate Rick Davis. “As patient advocates, we frequently navigate patients and caregivers to the palliative care service for off-site support. Are any of you part of palliative care groups and how does palliative care play into this? (Note by palliative care I’m not referring to end-of-life.)” Dr. Robinson, do you want to take that?
DR. PATRICIA ROBINSON: So I can make a quick comment. And probably by the diversity of your panel, I think all of us probably do it a little bit differently. So I can say at our institution, our palliative care team does not necessarily have a psycho-oncologist that is directly part of their team. I would say that Sarah is a resource that is utilized by all of us. And equally important, and I think kind of blunt, sometimes listening to the patient and figuring out what their needs are. Everybody may not have a need for the psycho-oncologist depending upon where they are in the adjustment of their care and symptom management. But certainly, if you recognize it as a barrier, the referral can be made, and they have equal access to the psycho-oncologist. If I’ve captured your role correctly.
KAREN PETERSON: We have another question in the Q&A. At what point do you relate the stress support available at diagnosis? Or when? So I think the question is, when is psycho-oncology offered? Is it offered at the very beginning? Or is it offered when you think the patient is under stress? Z?
ZHONNET “Z” HARPER: For me, I make my patients aware of what we have to offer in terms of resources immediately, but you have to recognize that if they’ve just been given a diagnosis, they’re only hearing so much anyway. There is no right or wrong time in which the patient will accept the service; it just depends on where they are. Some patients that have a very strong faith or outside family support, they don’t initially accept the offer of treatment or assistance, but they just always reinforce it. When I speak to my patients, even if we don’t have a relationship yet where they trust me with assisting them with their particular psychological or psycho-social needs, I just reinforce it, just always know that if you ever need to talk. And so it’s that constant, gentle reinforcement that it’s available. And I just continue to introduce it as I speak with my patients.
KAREN PETERSON: Z used the word “trust”. And I think it’s really important to acknowledge that, especially when it comes to psychosocial support. I can remember being the patient, you come into the room, and it’s just like, Ooh, you’re under a lot of distress, and you’re under a lot of anxiety. But that’s not what you’re there to deal with; you’re there to deal with the cancer. And so can you talk about that, Kerri? Trust and how it is that you broach the subject of offering up psycho-oncology services to the patient? Is it early? Is it later on?
KERRI SUSKO: Yeah, I agree with Z in terms of you offer it immediately. But again, are they hearing it immediately, and so you continue to find the windows and doors to continue to offer it. I think that in terms of trust, as Dr. Robinson said earlier, I think verbiage is very important. Even when you’re suggesting even seeing a counselor, I think there’s ways that you can say that where you normalize it, where you make it more of this is a universal offering to everyone versus the individual feeling like something’s wrong with me, I’m not handling this in the best way. I just want to, again, mention the sort of disparities. And again, Z mentioned this earlier, but in terms of, especially black women feeling sort of dismissed or that they’re supposed to be strong, and so they’re not offered as many things. I certainly have many clients who are feeling that way. We have disparities in people being able to access our services because of being in remote areas, being homeless. So I did want to just mention that I think there is hope in terms of different apps that people can now utilize on their phones to get some help. And also in terms of continuing telehealth, and I’m really hoping that telehealth and insurance paying for telehealth and visits will go beyond this emergency that we have. And I think that it does look like from some of the advocacy that I’m doing that it is more of a bipartisan buy-in into that. So I do encourage everyone to sort of advocate for that.
KAREN PETERSON: Thank you so much, Kerri, and it’s time to wrap up. We’ve had a wonderful conversation. It was so rich, it was so powerful, and it was so interactive, and I really appreciate every single last one of you for participating in this conversation today. Thank you Blue Note Therapeutics for bringing us all together. And if you have any questions or interest in being a patient advisor for Blue Note Therapeutics, please contact us at firstname.lastname@example.org. Thank you so much. Have a wonderful day!