Survivorship and Wellness: How do we achieve both?

Summary
Dr. Randall Oyer discusses the Cancer Survivorship and Wellness Program at Penn Medicine's Ann B. Barshinger Cancer Institute. The program supports cancer survivors beyond the treatment phase by helping to manage side effects and the emotional impacts of the cancer diagnosis. Dr. Oyer emphasizes the importance of listening to the patient and meeting them where they are in their survivorship journey. The program includes a team of healthcare professionals who address various aspects of survivorship, such as sleep disturbance, weight management, mobility, and emotional health. The goal is to provide holistic, patient-driven care and bridge the gap between oncology and primary care.

Takeaways

• The Cancer Survivorship and Wellness Program at Penn Medicine's Ann B. Barshinger Cancer Institute supports cancer survivors beyond the treatment phase by helping to manage side effects and the emotional impacts of the cancer diagnosis.
• Listening to the patient and meeting them where they are in their survivorship journey is crucial for providing effective care.
• The program includes a team of healthcare professionals who address various aspects of survivorship, such as sleep disturbance, weight management, mobility, and emotional health.
• The program aims to provide holistic, patient-driven care and bridge the gap between oncology and primary care.
• Screening for distress and having a plan to address it is an important part of the program.
• Community resources and support groups are also valuable in supporting cancer survivors.

Chapters
00:00 Introduction to the Cancer Survivorship and Wellness Program
06:40 The Unique Approach of the Cancer Survivorship and Wellness Program
11:40 Addressing the Psychological Toll of Cancer
24:26 Screening for Distress and Providing Support
29:05 Final Thoughts and Patient-Centered Care

Resources

• The Ann B. Barshinger Cancer Institute
• Cancer Survivorship and Wellness Program
• HOPE Note
• Helping Cancer Survivors Be Well: An Integrative Oncology Leadership Collaborative Case Study  

Check out the book: "Healing and Cancer: A Guide to Whole Person Care"
Visit https://www.healingandcancerbook.com/ for more information.

Connect:
Twitter: @DrWayneJonas
Facebook: Dr. Wayne Jonas
Instagram: @drwaynejonas
LinkedIn: Dr. Wayne Jonas
LinkedIn: Alyssa McManamon

Visit Healing Works Foundation www.healingworksfoundation.org for more information.

Dr. Wayne Jonas is a board-certified physician and Dr. Alyssa McManamon is a triple-board certified hematologist/oncologist. The opinions expressed on this show are those of the hosts and guests and do not necessarily represent the views and opinions of their places of employment, the Department of Veterans Affairs, or the United States government. The opinions expressed on this podcast are meant for entertainment and education and should not be used to diagnose or treat any medical condition nor should they be used as a substitute for medical advice from a qualified, board-certified practicing clinician. Dr. Wayne Jonas and Dr. Alyssa McManamon have no relevant financial disclosures.

Transcript

Please note that this transcript is produced electronically and may not be an accurate representation of what was said. It may not be reproduced, edited, altered or modified in any way without prior written permission. Any use of quotes or excerpts from this interview requires explicit permission from Healing Works Foundation. Please contact us at healing@healingworksfoundation.org if you would like to use any part of this transcript for quotes or other purposes.

“How Healing Works with Dr. Wayne Jonas & Dr. Alyssa McManamon”

Survivorship and Wellness: how do we achieve both for patients?

Alyssa McManamon (00:02.332)

Welcome to How Healing Works. I'm Dr. Alyssa McManamon, and today we're going to cover the topic of survivorship and cancer. My guest, Dr. Randall Oyer, a fellow hematologist oncologist like myself, is the medical director of Penn Medicine's Ann B. Barshinger Cancer Institute, and he'll take us through a program called the Cancer Survivorship and Wellness Program. Dr. Oyer was also a member of the Integrative Oncology Leadership Collaborative, which is a group we've discussed several times before on this program.

The IOLC, as it's called, was a two -year initiative which brought together top national oncologists, nurses, social workers, and other individuals involved in cancer care to discuss issues and create resources. The Cancer Survivorship and Wellness Program at Penn Medicine supports cancer survivors beyond the treatment phase by helping to manage side effects and the emotional impacts of the cancer diagnosis. Thank you, Dr. Oyer, for joining us. And before we dive into today's topic of survivorship, can you tell us a little bit about yourself and how you decided to devote your career to supporting those with cancer?

Randall Oyer MD (01:08.611)

Thanks Dr. McManamon and thank you for the opportunity to be here with you today and with your listeners. I went to medical school in the 1970s and I was really touched by the suffering that the cancer patients went through. But I knew that the patients needed a doctor who was going to be nice to them. And I knew that about myself. I knew that I was going to be nice to the patients. And I've been practicing for more than 40 years. And over the past 40 years, we've made breathtaking discoveries.  Things that have really affected clinical practice like CT scans, Gleevec, understanding molecular and genetic differences between cancer cells and normal cells, and immunotherapy. And in that time, one of the most important lessons that I learned was actually through the practice of medicine. And I...

I always remember three sort of highlight moments for myself. The first time I was told as a medical student to go tell a person that he had cancer, he actually said to me, “Doc, is that treatment going to make me live longer or is it just going to make it feel that way?” And I was blindsided. I didn't really understand or understand at the time what he meant. And I really had to think about that.

Then the first week that I was on service as a medical intern, I was approached by a very helpful social worker, my first medical social worker, who said, you told the person a lot of information, but did you stop and pause to make sure that they understood what you were saying? And that, at my young age at the time, was a revelation as well. And a third notable moment for me was a couple years later

when our wonderful oncology unit housekeeper, Diane, who was so nice, upbeat and cheerful with every patient. One day I was sitting outside a patient's room and I watched Diane go into the room silently and clean one side of the bed and then the other side of the bed and when she came out, I said to her, “Diane, you're usually so upbeat and cheerful and supportive of the patients. What happened?” And she said, “Dr. Oyer,

Randall Oyer MD (03:33.763)

Sometimes they need me to cheer them up and sometimes they just need me to clean the room.” And that was really a lesson in meeting people where they are.

Alyssa McManamon (03:45.5)

Hmm, that is all three examples are so beautiful. And what I'm hearing out of it really is that we think we're going through medical training and being trained by our mentors, which we think of typically if we're physicians as physicians or nurses as nurses. But these examples just show that we're learning the most important lessons sometimes from people who are on the team in other ways. And so the patients themselves and other people caring for them. So that was just so helpful and beautiful. Thank you for that. 

I appreciate you showing us your journey in that illustration. And I agree that certainly learning from and listening to the patient as a person really is key to providing the type of care that will support, in this case, better health outcomes is what we're all hoping for. So we are here today to talk about survivorship, which can be a controversial term for some because some people prefer different terms. And really that's patient specific, but there's terms such as warrior or thriver.

For our own understanding, we'll describe a survivor as a person living on the spectrum between diagnosis through post-treatment or, as I like to say, through the balance of life, because not everybody chooses treatment. So I really want to be present to, you know, you're a survivor from diagnosis, whether or not you ever choose a treatment. So, Dr. Oyer, would you agree with this definition of a survivor or do you have another to share?

Randall Oyer MD (05:04.963)

Well, I do agree with the definition. I think it works, but I think of it as actually an operational definition. It tells us how to organize our work, how to organize our thoughts, how to organize our services. But you also in the part within the question, you made a really important point and that is listening to the patient. So I think what really matters the most is what the patient thinks. Yes, every patient wants to survive cancer,

but do they want to be considered a cancer survivor? Is that how they want to be categorized? Is that how they want to be treated? So I think that what matters most is what the patient thinks. And I think that every patient wants to be well again, which is why we've relabeled and started to think about our survivorship program as survivorship and wellness. Survivorship I look at as a state, a person who survived cancer. And wellness is what I hope the patients and families want us and want them to be able to recover to.

Alyssa McManamon (06:16.06)

So survivorship in that operational definition then is kind of a binary. You either are or are not surviving cancer, but the wellness component is more the aspirational. What does that look like for you? And how can we support you in getting there? So thank you. So the Cancer Survivorship and Wellness Program at your institute is so unique, really. And I know our listeners would love to learn more.

Randall Oyer MD (06:30.819)

Yes.

Alyssa McManamon (06:40.412)

Can you tell us more about the Cancer Institute itself and or just the Cancer Survivorship and Wellness Program and how that fits together? How does it support cancer survivors and how is it created in terms of what gap were you trying to fill? And then alternately and at the end, how do you feel this has been successful so far?

Randall Oyer MD (06:59.523)

Just a minute then about the Cancer Institute itself. We're the Ann B. Barshinger Cancer Institute. We're a community hospital, community cancer center that's part of the University of Pennsylvania Health System. We pride ourselves on having holistic patient-centered care with academic-level care through our association with Penn. The real question you asked, Dr. McManamon, was...

about our Survivorship and Wellness program. And I have to tell you that that actually grew out of the work that I was lucky enough to be invited to be part of with Dr. Wayne Jonas, yourself, and the work through the Samueli Foundation, looking at integrative oncology, holistic care, and really considering what survivorship should look like. It was at the same time,

that I had the opportunity to participate with the group that you described, that we were thinking about expanding our survivorship program because more and more people are cancer survivors. And I actually had an “aha” moment. I wasn't sure what to do. And then I had an “aha” moment when I began to understand the HOPE note, the HOPE program that Dr. Jonas had devised. For those who don't know, the HOPE note starts with a question about what's most important to a person. And that was really what changed our thinking about, so it didn't matter what we thought survivors should be or what we thought we were going to do. It mattered about what the patient wanted. What were they going to hope for? What did wellness mean to them? What were they willing to do about it?

What were they willing to invest time and effort in? And again, I think you again hit the nail on the head. It's about what the patient thinks. So that's actually how we really came to a new place with our survivorship program and became a survivorship and wellness program, which we think is patient driven. And it's been very successful. We've had an entire change in our thinking.

Randall Oyer MD (09:22.307)

We've had some updated training, programming for our APPs (Advanced Practice Practitioners), our nurse practitioners and physician assistants. We have a templated version of a survivorship and wellness note that we can use at this point.

Alyssa McManamon (09:43.196)

Yeah, in the EHR. So the systems-based things are starting to fall into place, meaning training and then actually operationalizing into the EHR ways to actually document the care. I think your last point about educating team members is so important because I actually think that we all go into medicine, nursing, social work with this idea that we're going to support people's health and wellbeing.

I feel that maybe there are some people who are drawn simply to pathology, but I just, my sense of my colleagues in all of these fields is that people are drawn to help people get to what matters and to help people live their best life, so to speak. And so this is just a beautiful way to allow your staff members to actually engage with that part of maybe what brought them to care in the first place and to be part of your team in caring for patients with cancer. So I just applaud that you created the environment for your care teams to really participate in these ways. Have you had any comments from your actual care team members to that point or am I just kind of thinking that's true?

Randall Oyer MD (10:51.011)

Oh no, I think that people always do better when they see their role clearly, when they know their unique value, when they know that there's something that they can do that they're really good at, really specialized, and that they can support the rest of the team and a patient and family. So it's been very positive all around.

Alyssa McManamon (11:15.74)

Great, yeah. So, you know, what stands out as part of what's important about the program is the fact that it really acknowledges the emotions and often the emotional scars that can come with a cancer diagnosis. You know, patients may feel, so to speak, “lost at sea” after completing active treatment. And the state of limbo about, am I a patient or am I a survivor or what am I at this time when I finish the treatment course kind of can cause emotional stress for people. Can you talk a little bit about why it was so important to address the psychological toll that cancer can have on people?

Randall Oyer MD (11:50.627)

You know, I certainly agree with you. People have different ways of coping and processing what happens to them. And over the decades that I've been in practice, I've seen many ways that people and patients and families deal with cancer treatment and recovery, hopefully. And there are some themes that I've seen. One is that the uncertainty about prognosis persists for a long time. Even people who feel well have told me over the years that they get anxious when it comes time for a checkup and until the results come in. So managing that anxiety and that time and trying to get results to people as quickly as possible I think helps there. Another that I've noticed and I've heard this from patients is that their families move on

much faster than they do. Once a person is done with treatment and no longer coming for active treatment, sometimes the family's ready to move on. The schedule's back to normal. Or once a person looks healthy or their hair grows in or they've had their port removed, the family, the caregiver, the friends who've been so helpful during treatment are ready to move on there. You're done with treatment. Let's move on. This is what you did it for. Let's move on.

Well, the person who's been through it isn't necessarily internally ready to move on. Some people have physical changes that require accommodation, recovery, or getting used to or accepting a new normal. I think everybody has some fog of treatment that they're left with and people emerge from that at different speeds. And that's the thing that we can't really tell

when we're looking at a person. And I think that's why it's so important to have some sort of screening tools or plan to assess that. We miss the subtle changes if we don't ask or screen for them, or we kind of rely on our own bias if we make a judgment about how somebody is feeling or should be feeling.

Randall Oyer MD (14:15.811)

or looks like they're feeling unless we really take time to ask.

Alyssa McManamon (14:21.66)

I think that's a wonderful point. I mean, the Cancer Survivorship and Wellness Program, you know, it takes into account what I hear, you know, it is creating a safe space to have those questions asked and then to allow them to answer. And at home, you know, those questions might not be being asked, as you just kind of pointed out, people are ready to move into maybe the new normal, but what that looks like for the person, it gives them a place to explore it if you're offering a program such as this. So that's wonderful.

Randall Oyer MD (14:52.163)

Just a little comment about that if you don't mind, isn't it? You said safe space to ask, yes. And then we have to take the time to listen. We have to take the time to listen. We have to realize that that may not be a once and done conversation, but it may be the beginning of a conversation. And we have to be prepared to react and act. If somebody takes the time to open up and share.

Randall Oyer MD (15:21.955)

and let us listen and give us the privilege of hearing that. They expect that we're going to do something about it, react in some way and do something about it is not the same as fixing it.

Alyssa McManamon (15:38.012)

Yeah, and I think thinking about it from the provider standpoint, what's so important is that you have an entire team. And I would just like to briefly list the numbers of people and you're going to maybe tell me that there's more. But on this team, it's not just me say as the provider asking the questions and then saying, what am I going to do to address this? I mean, you expanded your team to include, and you can correct me, two physicians, four advanced practice practitioners, two nurse navigators, a physical therapist, a manager of wellness, a massage therapist, an information services professional to help get the word out with the marketing and communications professional, and partners with the cancer center otherwise. And so I think that as people listen who maybe are on care teams, the fear in asking is that we're gonna have to address this and maybe you feel like just one person, but the beauty of your program, and correct me if that list is not exhaustive, if I've missed some, but the beauty, I think, is really that team aspect because you're not alone in addressing the thing that comes up.

Randall Oyer MD (16:42.243)

Yeah, that is the team. That is the Survivorship and Wellness planning team. Additionally, there are many more of those individuals who are practicing survivorship and wellness in the cancer institute, multiple physicians, multiple nurses, nurse navigators, and APPs (Advanced Practice Practitioners) all at the front line supported by

the chaplains, the social workers, the financial counselors, the behavioral health therapists, and many others as well. I think that there are a couple of other important parts of the team. One is to really function as a, or to work as a high functioning team, meaning, and you alluded to this earlier, having a single

critical mission, all working from the same place, understanding that we're here to help people heal, be well, and be supported through the entire spectrum. The second part is knowing who does what, knowing who's responsible on the team for what aspect of a person's care, whether it's emotional support or spiritual support.

We have a full-time chaplain as well. And then the third is communication. Having processes in place so that we communicate precisely, accurately, and in a timely fashion. You know, we can't send each other full narratives of every visit. We have to have standardized methods for communicating. I think that all makes the team work.

Alyssa McManamon (18:40.604)

Thank you for the clarification points. So, survivorship really, as we've said, should never be an afterthought. Discussions between the patient and the care team about life after cancer should really, we think, begin at diagnosis. That seems to be what patients want. Patients have been surveyed about when do they want integrative sort of care and integrative health conversations to occur. So that would be one example of maybe at the beginning where they're looking for that,

but also that these conversations like you mentioned may occur at different times and really continue well into life after treatment. So how does the concept of survivorship and supporting survivors fit within the framework of whole person care, even maybe outside of your clinic?

Randall Oyer MD (19:23.011)

Well, that's a question that's been asked for years. And that is people completing cancer treatment, survivors, if you will, do they stay with their oncologist or do they go back to normal life with their primary care doctor? And I think it's both. And we've developed a program with a wellness physician. We've actually hired an internist who works with us in the Cancer Institute.

And she developed a program called Bridging Wellness. So the medical oncologist has many tasks in their visit, as you know, from your own practice, checking up to make sure the cancer hasn't come back, making sure that the patient is feeling well, making sure that they're recovering from side effects. And then on the other hand, the primary care doctor has much to do as well:

vaccinations, wellness checkups, mammography, colonoscopy, anything, hypertension, diabetes management. But there's a gap between what the medical oncologist is able to do in the context of a visit and what can be done in the context of a primary care visit. And our wellness physician who works here in the Cancer Institute,

has developed four specific domains that she addresses in a visit. The first, and she works with a template, so that the visits are directed so that she doesn't become a de facto oncologist or a de facto primary care doctor. She's there really to help with healing and to bridge a gap. And those four areas are sleep disturbance and fatigue, weight management and nutrition,

mobility and exercise and mood outlook and emotional health. Those are domains that every oncologist would say, sure, I deal with those. Every primary care doctor would say, sure, I deal with those. But to really take the time and have a visit devoted to that, where that is a patient -driven goal. You can take time to...

Randall Oyer MD (21:52.131)

understand the background, understand what the patient wants to accomplish, understand what the tools are and how to make referrals to resources. That's really the focus of the goal. Our wellness physician is able to see people undergoing treatment at any point. The first visit is an hour. The second visit is generally about six weeks later, is a half hour.

Randall Oyer MD (22:22.307)

and there will be four half -hour visits over the course of a year. The point that makes it time limited, or the point in making it time limited, is so that she doesn't become anybody's primary care doctor. So that she has a specific work effort that she's going to help people return to wellness a very specific, focused way.

Alyssa McManamon (22:48.316)

Yeah, I think the naming of her position is so important. You know, the idea of a wellness physician, not that the PCP can't be a wellness physician, not that the oncologist can't be wellness focused, but that that is, like you said, it's a direct possibility, it's a goal. We say this is possible for you and we have this physician who wants to support you in this. I think this idea of bridging really honors that something happened to you as a person, say, who was diagnosed with cancer

and that we are gonna help you get to the other side of that and not just say, oh, you rang the bell and therefore you're done until your next follow-up scan. You're really honoring that something happened, not just to your body, not just to your tumor, but that really involves you as that whole person who needs to be kind of walked across the bridge to what's coming, you know, what's down the road. And I just, I think the naming of that and just really the way you've honored people in their actual experience is beautiful.

Randall Oyer MD (23:29.987)

Thank you.

Alyssa McManamon (23:45.5)

Thank you for sharing about that. So when a person is diagnosed with cancer, you know, the emotions, like you talked about the anxiety, you know, surrounding coming for a follow -up visit, but emotions come up even at diagnosis, of course, things like fear, potentially anger, denial, they may arise. And so support groups and resources are available to help guide people with cancer, but it can be difficult to sift through what's best for any one individual.

So as you and the care team are developing a patient's care plan, how do you determine what resources are most helpful? And are there general resources that you found most helpful for almost all cancer survivors to improve the quality and quantity of life?

Randall Oyer MD (24:26.019)

Well, I think we begin with screening. So I think that, again, we don't know what people are going through. So we screen everybody on a routine basis. That may annoy people sometimes to have another questionnaire. And we always say, fine, if somebody doesn't want to do it. But we explain why we do. We use both the NCCN distress thermometer and the PHQ2

as screening tools if somebody scores high. We have an algorithm where at four or above they see a social worker. We have oncology social work full time in our cancer institute at seven or eight, a referral to a behavioral health counselor, and at nine or 10 to psychiatry or emergent evaluation and intervention. So there's two parts there.

One is assessing and doing that routinely. And the other is to have a plan to actually do something about it in a standardized way. So then beyond the people who work with us and for us in our cancer institute, having community resources, support groups that we run, support groups that are done with community organizations online like Penn's Oncolink and just finding what's available in the community, keeping the list updated, and that as a link on our survivorship website, I think is very important.

Alyssa McManamon (26:00.572)

Yes.

Alyssa McManamon (26:06.94)

Yeah, realizing that there are community partners, but we really have to be actively looking for those and keeping it, like you said, up to date. You know, if you look back 15, 20 years, and I'm thinking to when I went through oncology fellowship, I don't remember screening for distress. You know, we certainly also do that where I have worked, and it's the standard. And I hope everybody listening, of course, has adopted that as well and having a plan to address it. But I mean, I don't even.

I look back and I think, I don't think we were doing this. And I mean, the experience for patients must have been just completely different bootstrapping even that goes on now, because we know people still bootstrap through, you know, pull themselves up on their own, even though maybe they didn't fill out the questionnaire or they did and something fell through the cracks. So if you think back to maybe 15, 20 years ago, I mean, I think you mentioned the progress within the actual technology of the medicines we can use, but this seems like quite night and day.

Randall Oyer MD (27:02.755)

It is.

Alyssa McManamon (27:03.804)

Yeah. Well, you know, I really want to thank you for joining us today and for your involvement in the Integrative Oncology Leadership Collaborative. Really, your perspective and experience was a wonderful addition both to that group and also to our listeners today. Before I ask for your final thoughts, I also just want to acknowledge your leadership as, you know, the medical director of the Cancer Institute to have joined a group of other

cancer care providers and professionals over that 18 month period to have provided your time and your perspective to your team at your local center, really to have taken a step into making change, which if people want to hear more about Dr. Oyer and the Ann B. Barshinger Cancer Institute's experience with making change, that's in one of our case studies that's on our website. And I think it really speaks to the aspect of leadership that can be uncomfortable. Making change is not easy.

I do want to last say that, Randy, you were the one within the IOLC that pointed to a diagram I had where we talked about how we were going to be a community of practice, and we wanted to pick out what that looked like. For some people, that looked like telling the truth. For some people, that looked like sharing our failures and our successes. But what you pointed out in this beautiful graphic was love and how we treat our patients with love. And I just thought that was the biggest step of leadership that I had seen in a group that was just coming together for the first time on the first or second meeting of those cancer centers. I really, really wanted to call you out for that leadership. And so with that, do you have any final thoughts that you'd like to share today?

Randall Oyer MD (28:37.347)

Well, I would like to say thank you to you, Dr. McManamon, to Dr. Jonas, to all the members of the IOLC, and the patient voices really stand out and were so valuable and will always be present in my ear. I guess my closing thought would be something that you alluded to, and that is, let the patient be your guide. Look, listen, and pause.

And in addition to bringing the patients to the table for decision making, let's remember the caregivers. They need to be there as well. We need to understand their perspective. We need to support them and we need to learn from them as well. And this is very, this is very soft. This is the heart work to what we do, but we still need, we still need research because this is science as well

and we need to do better. And I think all of our progress in medical care, especially in cancer, has come through clinical trials and research. So I thank the patients and families who have been involved in that as well. So thank you.

Alyssa McManamon (29:49.98)

Yeah, that's wonderful. Yeah, great way to end. I think we've pointed out that after successful treatment, the challenges of cancer are not over, not for the patients, not for their caregivers, and not for us. And so just as you go back to your own teams, hopefully this will spark something for you and where you provide cancer care. And I just wanted to thank you, Randy, again, and thank you all for listening to How Healing Works. Please stay tuned for the next episode.

Resources: 

NCCN Distress Thermometer https://www.nccn.org/docs/default-source/patient-resources/nccn_distress_thermometer.pdf 

PHQ2 (Patient Health Questionnaire-2) Need to ask Alyssa about this

https://cde.nida.nih.gov/instrument/fc216f70-be8e-ac44-e040-bb89ad433387/module/fc216f70-be8f-ac44-e040-bb89ad433387 

UPenn Oncolink https://www.oncolink.org/ 

Helping Cancer Survivors Be Well: An Integrative Oncology Leadership Collaborative Case Study https://healingworksfoundation.org/resource/helping-cancer-survivors-be-well-iolc/