What does whole person cancer care look like?

Summary

In this episode, Dr. Alyssa McManamon and Dr. Wayne Jonas discuss the concept of whole person care in oncology. They explore how whole person care encompasses lifestyle, behavior, and wellness practices that can complement conventional cancer treatment. The conversation highlights the importance of addressing the physical, mental, spiritual, and social aspects of a patient's life to improve overall well being. The HOPE Note Toolkit, which includes the Personal Health Inventory, is introduced as a resource to facilitate whole person care discussions. The episode emphasizes the need for a collaborative team approach to implement whole person care in practice.

Takeaways

• Whole person care in oncology involves addressing the physical, mental, spiritual, and social aspects of a patient's life.
• The HOPE Note Toolkit, including the Personal Health Inventory, can facilitate whole person care discussions.
• Whole person care should be implemented in a collaborative team approach, involving healthcare providers from various disciplines.
• Addressing side effects and promoting self-care are important aspects of whole person care in oncology.

Chapters

00:00 Introduction
00:18 Whole Person Care in Oncology
02:24 Understanding Whole Person Care
04:59 Applying Whole Person Care in Oncology
07:01 Addressing Side Effects and Self-Care
11:04 The HOPE Note Toolkit
14:17 The Integrative Oncology Leadership Collaborative
17:33 Timing of Whole Person Care Discussions
19:31 Patient and Oncologist Perspectives
20:55 Fear and Hope in Cancer Care
24:55 Personal Health Inventory (PHI)/Oncology Personal Health Inventory (OPHI)
27:04 Implementing Whole Person Care in Practice
29:17 Collaborative Team Approach
30:30 Conclusion

Resources:

• HOPE Note Toolkit
• Primary Care Personal Health Inventory (PHI) 
• Oncology Personal Health Inventory (OPHI)

Want to learn more?
Check out the book: "Healing and Cancer: A Guide to Who

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”

What does whole person cancer care look like?

Alyssa McManamon (00:01.435)

Welcome to the next episode of How Healing Works. I'm Dr. Alyssa McManamon. I'm a triple board certified hematologist, oncologist, and internist passionate about helping other clinicians deliver the type of cancer care that we all want to be doing, but may struggle to deliver.

Wayne Jonas (00:18.255)

And hello, I'm Dr. Wayne Jonas. I'm a board certified family physician, expert in integrative health and healthcare delivery. Today we'll be discussing the concept of whole person care. This practice is catching on as patients and providers are showing more interest in evidence-based practices that complement conventional medicine and support an individual's capacity for healing and wholeness. Modalities such as lifestyle, including nutrition, activity, stress, sleep,

and drugless approaches such as acupuncture, yoga, and supplements that are sometimes referred to as complementary medicine are all part of whole person care. Although some of these practices have been viewed on the fringes of medicine in the past, more and more studies in recent years have revealed that the credibility of these methods, especially those that fall under lifestyle, behavior, and wellness, are important for all care.

The intersection of conventional medicine and these integrative practices are where we find whole person cancer care in the application in oncology. It opens up the treatment of patients beyond "what's the matter with you," the treatment of the disease, and tailors it to "what matters to you," the person who is the patient. In season one, we discussed whole person care in different areas of chronic disease, trauma, weight, diabetes, kidney disease.

And we looked at it through the eyes of systems like the DOD and the VA. But now we will discuss what it looks like specifically in cancer care.

Alyssa McManamon (01:55.259)

Thanks, Wayne. Interestingly, a recent survey of more than 1,000 cancer patients revealed that 60% said they strongly believe that complementary therapies are beneficial in the management of side effects and their overall wellbeing. So the question arises, how can we as medical professionals support this need? First, I think we need an understanding of what whole person care actually is and how it works within oncology. So we'll start by just answering, Wayne, if you would, what is whole person care?

Wayne Jonas (02:24.167)

Well, first of all, I want to say it's a great honor to do this with you, Alyssa. I am not an oncologist, so I don't have extensive experience in taking care of patients with cancer on a day-to-day basis. And so it's been, and it is, a great partnership to be able to work with you to help bring these kinds of concepts specifically into oncology and cancer care.

Let me talk a little bit about whole person cancer, whole person care in general, and then I'll ask you about how it's applied to cancer because you're the expert in that area. We know, for example, that after you get a diagnosis of any kind of chronic disease, usually the medicine then treats the disease and tries to control it in some way. Very often it's late in the process.

Wayne Jonas (03:12.163)

And even if those diseases have a major cause that is based on behavior and lifestyle, that's often not addressed. And so part of whole person care is identifying those factors that we know can reduce risk and often reverse some of those chronic diseases and bringing them into the care of the patient, not just the pill and procedure or the drug approaches in those areas. This includes things like lifestyle and behavior,

nutrition, exercise, sleep management are all major issues. We know that mental health, for example, is a major influence on chronic illnesses. And so incorporating mental health care, mind-body practices become a key part of whole person care. We know that what I call the spiritual components, or really what matters to you in life are important motivators for why you even wanna have health in the first place. 

And so asking what matters to you in life, what brings you joy, and why would you engage in these kinds of whole person care practices, and why should we even have that discussion. And then finally, we know that the social and the economic aspects of the environment that you live in have a huge impact on your ability to stay healthy, to get rid of disease, and to return to health if you have a disease. And so we're talking about addressing all of those in healthcare practice: the behavioral, the mental, the spiritual, and the social and economic components. 

That's what whole person care is. Love to though, in this series, hear about your area of expertise, and then how do you take these concepts and apply them in the case of cancer care? Could you talk a little bit about that?

Alyssa McManamon (04:59.575)

Yeah, sure. I mean, I, you know, just listening to what you just said, it's a lot, right? It's a lot. It's like the whole enchilada trying to cover everything and really approaching it that the person is a system within systems, you know. And so I think thinking about how we apply whole person care in oncology has to do with, you know, what are we already trying to do, but maybe we're not calling it whole person care. And part of how it maps onto oncology for me is the idea of the goals of care.

In oncology, there's this concept and other serious illness sort of conversations called goals of care. What is it that the person is hoping to gain maybe when we know care is not possible, which is oftentimes true in oncology, not always, but oftentimes. And so really thinking about how does this map to things we're already doing. And so goals of care is one thing where we actually might know a person early on in their whole aspect, what's important to them, what matters to them, what are they hoping for in their life, and then being able to apply that throughout the care trajectory as we go with them. And that could be that they get to cure or that could be that they move toward end of life. And so I think it's just a different way to language some of the things that we're already doing. 

Another aspect of how whole person care applies in oncology is that oftentimes our patients ask us what they can do to prevent the next cancer. And that conversation may fall somewhat flat. It may not go anywhere. And whole person care allows a place for that conversation. And so when those questions are asked, whether they're asked by the patient early on or at the end when they're in the, you know, survivorship care plan mode, I think it gives us a place to have those conversations and address that there are drivers that people can control that, you know, relate to their risk for developing another cancer, for example. We have lots of patients who end up in that boat. And so I just think it provides a space to have conversations that patients wanna have, and in different ways, maybe labeled differently, but to kinda get to some of the same goals we already have.

Wayne Jonas (07:01.435)

I think you make some excellent points there. You know, I'll acknowledge that this sounds complex. It sounds like a lot, but is it any more complex in cancer care in general? I mean, look at some of the very complex interventions that we do in oncology and in medicine in general with surgical approaches and interventional aspects with detailed technologies that are brought into that and biomarkers, et cetera. That's pretty complex.

I would suggest that this isn't any more complex than that. It's a matter of just thinking about it and organizing it in a way to make it effective and efficient. I think bringing the patient into the process is key. You mentioned that. We know that behavior and lifestyle have a huge impact on how you feel and even how long you live, even if you have cancer. And so isn't that important?

Those things don't get paid for necessarily. They don't get necessarily FDA approved in those areas. And yet they can have as much influence over your quality and quantity of life as some of the drug treatments that you have for the cancer itself. And so it is complex. And what we're gonna try to do in this series is make it easier, make it easier to happen and to integrate it into the cancer plan that we have.

And help it get organized so that it's not just one particular modality, but it really is a philosophy and orientation and a discussion that the patient and the provider and their team have on a day-to-day basis. So anyway, that's what I would say to your question of complexity, yes.

Alyssa McManamon (08:42.187)

Yeah, yeah, I want to add one thing, which is just that, you know, when we meet patients, if they do choose treatment for cancer, oftentimes we know there's going to be a period of time where they might suffer new onset side effects that are a direct result of the things that we offer as treatment. And I think that, you know, whole person care would say that we can also try and ameliorate those side effects to the best of our ability.

But it is a partnership and we do need to give people things that they can do on their own, which would be under the moniker of self-care or, you know, things that maybe are not drug-related approaches. Oftentimes, it's this side effect is going to occur, so we're going to give you another drug to, you know, kind of take care of that side effect. And that drug has side effects as well.

So we get, you know, we do our best with the tools that we have, but whole person cancer care says that there's more tools that we can talk to them about and have them explore and potentially offer the ones that have evidence base.

Wayne Jonas (09:39.435)

I think that's absolutely right. And I think it can encourage patients to actually get the care that they need. I had a patient last week I consulted with who was, she just wanted to avoid chemotherapy altogether. She'd been through a few cycles. She'd seen the side effects. She just didn't wanna do it anymore. And her oncologist was offering her something that had a real chance of helping her and reducing the tumor, et cetera. It was a new therapy, but she was hesitant.

And I talked to her about how behavior, lifestyle, and some of the whole person practices could help her tolerate and even feel okay through that treatment, so that she could get the best of both worlds. And so we don't want people to abandon evidence-based proven effective areas. And these areas can help them actually stick to those things and get better outcomes overall.

This is sometimes called palliative care, isn't it? But oftentimes we call palliative care something that you do at the end of life after you've given up other kinds of treatments. And that is not true. Palliation or improvement in symptoms, feeling better and engaging in your own wellness practices is something that should be done right from the beginning, shouldn't it, in those areas. And so by calling it whole person care, hopefully we can expand the vision of that area of cancer care to make it more widely available.

Alyssa McManamon (11:04.375)

Yeah, I mean, I think before there was a specialty called palliative medicine, you know, oncologists thought that they were and they were doing palliative care. But I think that, you know, palliative medicine specialists are unfortunately not in the numbers that we need. And so we all need to be palliative medicine, you know, focused. And I think you're right, whole person care allows for that. It just doesn't have to be called palliative care, per se.

Wayne Jonas (11:27.155)

And I think the American Society of Clinical Oncology, ASCO, the largest membership organization of oncologists in the world, has a theme this year of expansion and the focus on palliative care. So stay tuned for that. So let me talk a little bit about...

what this actually means and some of the tools that you and I were involved in, in bringing into practice to actually make this routine and regular in your average practice. This is called, we call this the HOPE Note Toolkit. It's a set of tools in those areas. And maybe we can talk a little bit about that. I'll describe it briefly. And then you can talk about how it's been translated into the use in the care of patients and people with cancer.

So HOPE stands for Healing Oriented Practices and Environments visit. That's an acronym for that. And anybody who's in medicine knows that when you see a patient, you write something called a SOAP note. It's a subjective, objective, the assessment and the plan. And that is focused on the diagnosis and the treatment of the disease. The HOPE visit is an opportunity to have a discussion about these other whole person care elements that we just talked about in an actual day-to-day practice and bring together the kinds of aspects of whole person care that we discussed. It involves a set of separate tools that we've pulled together to try to make it easier to happen. 

One of those is called the Personal Health Inventory (PHI). And this is a two-page questionnaire that you give to the patient before the visit. And it allows you to have the discussion in the visit around the whole person aspects we just talked about, to streamline that discussion, and then to document that through a HOPE note in the electronic medical record. And then out of that comes a plan, bringing those kinds of person-centered discussions into the treatment plan, so they don't get ignored in those areas and they become an important part of the plan.

Wayne Jonas (13:44.764)

This was originally developed in primary care for general medicine, and it was tested in that field in a number of clinics around the country. And then when I met you and you were beginning to apply it in cancer care, we decided to pull together a team, a group of leaders from around the country to try to translate this information and the supporting resources that help people do this, specifically, for use in oncology. Could you talk a little bit about how that was done, who did that, and how it's being used?

Alyssa McManamon (14:17.691)

Yeah, so the Integrative Oncology Leadership Collaborative (IOLC), it really came from 13 different centers and some individuals were integrative oncology providers, some individuals that had interest in that field but weren't trained formally in integrative oncology. And we did come together as a group basically monthly over the course of a two-year period to really review what was available in primary care and to take those tools and just adjust them to make them more, I guess, appropriate for oncology. So the example of the Personal Health Inventory, which is really the foundational document, because that really is an intake, an alternative sort of intake form for a patient to have a voice in the process of their care. And again, that is kind of the beginning of starting a goals of care conversation in the larger sense, because it's about not only the disease, but also their health.

And so really looking at that together as a group, we had to come to some decisions, is this appropriate for patients with cancer? You know, you mentioned the question earlier, what do you want your health for? The group did not feel that was an appropriate question to ask people who've been recently diagnosed with cancer, and I tend to agree. So that question was removed, you know, and we got to some different places. And so if you look at that resource online, you'll be able to see it's very easy to fill out. As you mentioned, it's a two page PDF.

To support that and to support oncologists, if from the Personal Health Inventory, patients identify areas of their health that they want to then have support for or access more tools regarding, then there was a series of pocket guides that the group came together as subject matter experts and helped with the authorship of some of those, either through interviews of people who were part of the leadership collaborative and subject matter experts. But those are all tools that are available now online through the website and those are things that support patients and care teams both.

Wayne Jonas (16:16.903)

Yeah. Now, I think the translation of that tool and some of the other resources specifically for the use in oncology and cancer care, I think is what that leadership group did over a period of two years. And those resources are all available on the Healing Works website, and we're going to be adding more of those to them and making them available to other organizations to disseminate, like American Cancer Society and other places in those areas. The question of what matters to you in life is a question we all should be asking, right? When we get up in the morning, how do we want to spend our day? This is the question of meaning, and humans are meaning-making machines. It's very important for that. And cancer sometimes focuses that very succinctly on asking that question, what brings you joy and how am I spending my time.

When did the group feel like this should be applied? I mean, you know, cancer often hits people sort of out of the blue. They're surprised often when it emerges, and even though we know a lot of the risk factors that go into many cancers, but when's the best time to have this kind of a visit?

Alyssa McManamon (17:33.003)

Yeah, that was an interesting discussion that occurred pretty early on in the Leadership Collaborative. And I think people came down majority that really not the first visit, that there's just so much going on with, you know, it's like, you know, I have, we both have military background, you know, the idea of the fog of war, you know, at the time of a cancer diagnosis, there is a lot to kind of settle out first and to let that fog sort of settle so that people did not feel that the first visit when a patient, say, is meeting with an oncologist and the care team is the appropriate time to do this. That was the feeling of the group. That being said, patients may or may not agree. It's interesting because the way I piloted it when I first used that, in fact, it was the primary care form when I first used it in my clinic as a new intake form. I did offer it to patients on the first visit and nobody seemed to be harmed by that. I don't know that I went into deep detail in it with the patient on the first visit, but I certainly had them fill it out to start informing my care for them. But as a group, we decided probably the second visit or after would be a more appropriate time because there's a lot of tumor-directed decision-making and just education that needs to happen in that first visit. And I think it's interesting, though, to consider, you know, where is it appropriate, and that may vary.

But I don't think it's wrong to offer it after the first visit. I think that makes sense.

Wayne Jonas (19:03.879)

Yeah, I think that's great. I know we have done several surveys of patients and oncologists around whole person care over the last couple of years. And two things sort of related to this question emerged for me from this. Number one, it was important for patients that they hear from their oncologists that these are important areas to discuss.

You know, the oncologist didn't necessarily need to do them. And I'll ask you in a minute about, you know, who does them and how does it actually work. In practice, the team actually is involved beyond the oncologist. It was important to patients that the oncologist be aware of it, be supportive of it, and, you know, recommend that they get engaged in it. So that was number one. And then the second thing that came out of a recent survey that we did is that there was a real difference between when oncologists thought these topics should be brought up and when patients wanted to see them brought up. And the bottom line was that oncologists were more interested in waiting for a while and then saying, well, if they get side effects, then we'll talk about them and we'll bring things up like that or in survivorship. And the patients had a much different opinion. They wanted to talk about these things right up front. And my patient who was considering not doing chemotherapy is an example of that.

When she understood there might be some things that could help her get through that and feel better. That was a discussion right at the beginning, even before she started her new regimen. And so the patients wanted to have that discussion. So the oncologists need to have, at least bring the topic up and know that it's available and then bring their team into the discussion and have their team reinforce in providing the kinds of resources and the further support in that area. Would you agree to that?

Alyssa McManamon (20:55.895)

Yeah, I think it's interesting because I think, you know, well, why do patients maybe want to have this conversation early? Because they know they're about to deal with, like everybody knows if they go see the oncologist and new cancer diagnosis, they're going to be offered treatment. And the treatment is going to have side effects. I mean, you might not get them all, but you might get some or, you know, maybe you'll get none if you're extremely lucky, right?

Immunotherapy, for example, that you tolerate without side effects, maybe, maybe that's you. So, but patients don't go into the first visit thinking they're going to be the one with no side effects. They go into the first visit thinking, oh my gosh, I have cancer and I'm thinking I want to live, so I'm probably going to take treatment and then what's that going to do to me? And so the fear factor is already there. And so why would a patient say they want to have this conversation about what can ameliorate you know, side effects or you know, in this case an example of fear, I think that's why. And so there's a disconnect there. So from the aspect of the care team, like there is some benefit. I think we worry about opening a can of worms. Like if I give somebody this form and have them fill it out, but I don't have time to talk about it the first visit, I've somehow opened a can of worms. And I don't think that's really the case. I think as long as there's a commitment that you're gonna circle back to it, or even that you touch one of the questions during your intake visit.

And that is a signal to the patient that this does matter, that you are coming in here as a whole person about to lose some things, whether those are body parts or those are aspects of how you feel today compared to tomorrow, and that we're just gonna acknowledge that you're a whole person and that we wanna maintain as much of that as possible. 

You could expressly even acknowledge to somebody, we're not gonna be able to cover this in full today, but I'm gonna take a look at this, this is important to me and my team's gonna circle back with you. I mean, there's lots of different ways to do it. And so I think it's this all or nothing mentality that gets us into trouble where we then don't maybe do things that can help because we feel stymied by not being able to do it all. When I first started using that, again, it was the primary care form. I had a social worker sit with the patient after they'd filled it out and kind of go over with the patient

Alyssa McManamon (23:07.287)

and then come in and meet me at the intake. And the social worker actually would go over it and we would ask the patient if we had it right, you know, if the example. So the patient had filled it out, social worker had kind of gone over it with them. And so we were already a team looking at this form really before we even started talking about the cancer. So I'll give you an example just how useful that was to me one time when, and again, I was just trying, you know, I didn't know if I was doing this right or whatever, but there was a young woman with breast cancer, new diagnosis, and she was in her 30s.

And at that time, you know, of course I was going to follow the NCCN (National Comprehensive Cancer Network) guidelines. I was thinking about fertility preservation. I was thinking about what I needed to address for that visit, you know, very upfront. And her PHI and the answers to the questions about what mattered to her was like really clear that she was very career focused. She was a professor. I think she was an adjunct, but she was aiming for a professor position and had a lot of focus on her career and really had not had interest in having children to this point. I mean, she, I think she had done her homework and she was already kind of anticipating what this visit was going to entail. And really by the time the social worker explained with her in front of me what was, you know, her focus, her focus was to be treated as soon as possible and she didn't have fertility concerns. That was not something that was part of what she was concerned for. And so although I still brought it up with her and we still talked about it, I did not put my foot in the mouth and walk right into that assuming things about her just because she was in her 30s and didn't have children yet. And so I think that was really an instructive visit for me that the PHI (Personal Health Inventory) helped and that I could honor her where she was just by listening first about who was this person who walked into this office today with a new diagnosis of breast cancer.

Wayne Jonas (24:55.151)

I think you make so many great points there. I think when I teach the PHI (Personal Health Inventory) to residents and medical students, they kind of go down it like a checklist and did I ask this, did I ask that? It's not a checklist. It is actually a dialogue tool, right? It's a way of having a dialogue to really help the patient identify what's important and bring that into the healthcare plan. And I think your story that you just told illustrates that wonderfully.

I mean, cancer is a can of worms. As soon as you get that diagnosis, it's a can of worms. And if you don't address these areas, patients often will go outside of your care to look for things. The internet is now full of things, some with evidence and many without evidence. There's some that are even dangerous. And the patients and their family will often go to Dr. Google and other sources and start to ask about those and even use those areas in those areas and sometimes get in trouble. So there needs to be an open, honest, and trusting communication so you can talk about those things and really bring them into the care. Your point about fear is so important. I mean, fear drives this area so much that we often lose sight around the hope that is available and the right sizing the hope. And the HOPE Note is designed to at least assist in that, to get to know the person to make sure that we are accomplishing what some of their personal goals are in this particular care. 

So how does it actually work? I mean, you mentioned already about how you use the social worker, for example, to support you in this area. The team has to be involved in this, right? Can you talk a little bit about how this actually works in practice? And we're gonna be interviewing examples of how this is being applied in both small and big ways around the country and even outside of the country to illustrate it to our listeners in this series. But could you tell us a little bit about, you know, the basics of how it works in practice?

Alyssa McManamon (27:04.791)

Yeah, I think, you know, again, there's different ways to do this. And so one of the members of the IOLC, or the Integrative Oncology Leadership Collaborative, you know, they really moved this into their survivorship and wellness sort of, you know, programming where they kind of took some of the questions from the Personal Health Inventory (PHI) and kind of used those at that aspect of their treatment for patients.

What it requires is that I have you know, people who understand what that means, what is the PHI, that includes your front desk person, you know, that they're bought in, that they know what the form is, and you know, that those conversations have happened so that they can, you know, give that appropriately to the patient and explain what the purpose is. That means that also, you know, the nurse navigator who works with me, you know, that she's on board, and also the nurse practitioner's on board and the psychologist, so that it's kind of a team effort in that people know we have services available and we refer amongst ourselves to what's available. 

Wayne Jonas (29:17.607)

Well, this is a wonderful line. I hope that our listeners really got an idea of what we're trying to do here and how the series will unfold. Again, it's an honor to work with you. I would not have ventured into this area if I didn't have an oncologist such as yourself really already looking at the whole person and concerned about the whole person. To reinforce that, as we were sitting here in this interview, I just had a patient text me who had an oncologist doing a lot of whole health practice, but she had to change oncologists. And she texted me distraught saying, I need to talk to you. The new oncologist is not addressing any of these issues. And so the goal of this series is to help make that more routine so that happens less and less and support in that area. So we're gonna be bringing in some of the topics we talked about. We'll be bringing in experts to give examples of this and show how to do that. And we have a book coming out and it was really an honor to put together this book with you.

Wayne Jonas (00:17.77)

It's called Healing and Cancer. It is available now. Stay tuned for our next episode on where we will explore the recent IQVIA survey and its importance on cancer care. 

Alyssa McManamon (30:48.559)

Yeah, thanks for listening to How Healing Works.