How Healing Works with Dr. Wayne Jonas

When should I start whole person cancer care?

• Dr. Wayne Jonas • Season 2 • Episode 5

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Summary

In this episode, Dr. Wayne Jonas and Dr. Alyssa McManamon discuss when and how to deliver whole person cancer care. They highlight the importance of integrating whole person care into different phases of the cancer journey, including diagnosis, treatment, survivorship, and end-of-life care. The conversation emphasizes the need for early engagement and communication with patients, as well as the impact of whole person care on patient outcomes and quality of life. The episode also introduces tools and resources that can be used to facilitate whole person care, such as the Personal Health Inventory and the HOPE visit.

Takeaways

  • Whole person cancer care should be integrated into all phases of the cancer journey, including diagnosis, treatment, survivorship, and end-of-life care.
  • Early engagement and communication with patients about whole person care can help address fears and improve patient outcomes.
  • Whole person care involves understanding and addressing the individual needs and goals of each patient, beyond just the treatment of the tumor.
  • Tools and resources, such as the Personal Health Inventory and the HOPE visit, can facilitate the delivery of whole person care.

Chapters

00:00 Introduction
00:39 Attitudes and Access to Integrative Care
01:34 Defining Whole Person Cancer Care
04:00 Implementing Whole Person Care in Different Phases of the Cancer Journey
06:01 Starting Whole Person Care at Diagnosis
07:05 Listening to Patient Feedback
09:30 Whole Person Care during Treatment
10:31 Whole Person Care in Survivorship
13:39 Whole Person Care at the End of Life
14:18 The Impact of Whole Person Cancer Care
15:41 Engaging Patients in Their Care
19:24 Tools for Whole Person Care
21:43 When to Start Whole Person Care
23:12 Conclusion

Resources

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.

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”

When should I start whole person cancer care?

Wayne Jonas (00:07.298)

Welcome to the next episode of How Healing Works. I'm Dr. Wayne Jonas.

Alyssa McManamon (00:12.612)

And I'm Dr. Alyssa McManamon. Today we'll continue our conversation about whole person cancer care by focusing on when this method of care can be delivered. To recap for our audience, in a previous episode we discussed what whole person care is and how it focuses on the individual and answers the question "what matters." In this episode, we'll discuss when the conversation about whole person cancer care could and should be broached and how to go about doing it.

Wayne Jonas (00:39.874)

So what does the evidence say as it relates to the attitudes and access to integrative care? In the last episode, we covered the results of the survey that revealed that the majority of cancer patients, almost 60%, strongly believe in the benefits of integrative care, both to manage the side effects and to improve the quality and the duration of life. Patients say that their quality of life would have been improved if they'd been offered integrative and whole person care and they even would have selected a care site or a hospital based on that. This survey also found that there were gaps in communication and understanding between oncologists, their teams, and patients. There were different times that they wanted the care and the types of care that they wanted. And so we're gonna delve into that a little bit in this episode.

Alyssa McManamon (01:34.032)

Yeah, before we go on, I want, you know, Wayne, as an expert for many years in integrative and other types of care, I'd like to know what to you is whole person cancer care and how does it relate or differ from say, complementary and alternative medicine, otherwise called CAM? And also, what's the difference between whole person cancer care and integrative oncology in your experience?

Wayne Jonas (01:55.446)

So that's a great question and that's often confused. The terms integrative, complementary, whole person are often confused. In oncology, we also see different ways of approaching the same kind of care of a person, such as palliative care, supportive care, integrative care, et cetera, in those areas. In my opinion, whole person care means starting with a dialogue with the patient to find out what matters to them as a person.

So not necessarily what kind of treatment they want, but what do they want to get out of the treatment that will make their life better. So this means asking them about what matters in any area of care, starting with that question and then linking that question, the meaningfulness of what it is that they're trying to get out of that with the treatment itself and integrating that in a complete way.

When whole person care is at the intersection of complementary therapies, it also means integrating those into standard conventional care and also bringing the patient in their own self-care through exercise, stress management, nutrition, et cetera, into the dialogue and into the care plan. Integrative oncology often talks about complementary and alternative approaches and some of these do not have much evidence. And so if the patient is using them and we don't think they're beneficial, we need to know about that so that we can discourage those types of things. But if they do have evidence and there's increasing evidence for them, they're getting incorporated now into standard guidelines that we'll talk about, then that needs to be brought in. And that's part of whole person care too.

Learning how to deliver whole person care really is about learning how to streamline the integration of these components of the care of the person, what matters to them with the tumor treatment and what matters to the cancer treatment team.

Alyssa McManamon (04:00.936)

Thanks.

Wayne Jonas (04:03.374)

So you're a practicing oncologist and use some of these practices and have been working and trying to put whole person care into that. Could you weigh in a little bit on how you do that and what that means during different phases of the cancer journey from diagnosis to treatment to after the cancer treatment or even at the end of life?

Alyssa McManamon (04:30.084)

Yeah, I think just speaking from what would be ideal, you know, I think at diagnosis, you know, when we're laying out the initial treatment plan for the cancer itself, just acknowledging as we have to as part of the informed consent process, and just as we need to and want to, we talk about the potential side effects from any treatment. And I think where whole person care could really play a role here is actually trying to figure out, well, what do we have in our toolbox, so to speak, that can mitigate some of the known side effects that we're here counseling about or concern could occur? And so I think that's where there's a real opportunity to kind of start from the very beginning and looking at, you know, we know what our standard of care is and we know what we need to do and we know what might occur related to that to get to a goal which is to control or treat or cure the cancer. 

How do we then kind of modulate that in terms of side effects?  And I think that's where at diagnosis can be helpful. At the very, very beginning, when somebody first shows up, I mean, everybody you talk to who has a family member or who themselves have been diagnosed with cancer, there's a fear factor. It's just part of the experience. And I think if there's any way to address that in a whole person way from the get-go, there is no downside. And so I think...

At diagnosis, those are the two things that I would see, side effects and also addressing fear, while giving hope that people can get through the treatment, not just white knuckling through the treatment.

Wayne Jonas (06:01.394)

If I can add to that, the survey actually showed a difference in when patients wanted this and when oncologists thought they should do it. We discussed this in the leadership group we ran several couple years ago in which the oncologist said, well, gee, you can't really introduce these things right at the beginning because it's just overwhelming. You first of all need to talk about the tumor and then you bring it in later.

The survey showed otherwise. The vast majority, I think it was two thirds of patients said, I'd like to learn about these things right at the beginning so please bring them in and have that discussion. And so I think, you know, the jury has sort of spoken, if you will, at least the patients have spoken and said, you know, introduce the topic, at least at the beginning. And this often can help blunt some of the fear issues that you've talked about. If they know there are...

things they can get engaged in and they can do themselves that will improve their quality and quantity of life. This can enhance and insert hope into the initial dialogue.

Alyssa McManamon (07:05.22)

Yeah, and I think that it's interesting to think back to the survey because those people were, they have already been diagnosed and they have already, most of them, been into treatment. You know, those patients who answered the survey, they can look back on their experience and say, you know, I wish, right? And so that's really valuable to have, you know, them able to reflect back on a time when, you know, that maybe wasn't

present for them and to say that would have been helpful. And I think we really need to listen to that. That's part of this idea of listening to patient's voice and really asking. So I just want to foot stomp that. I think it's really useful to consider who was answering the survey. It was people who've already been diagnosed. And that's different than providers. Providers have not all been diagnosed and it's a different experience.

Wayne Jonas (07:43.36)

That's true.

Wayne Jonas (07:48.766)

Now that's true and at the beginning they may not even think about it until later as this retrospective part indicates. So it may be up to the oncology team to just bring it up so that they have permission to know that this is something they can talk about.

Alyssa McManamon (08:03.416)

Yeah. And then as far as treatment, if we get into treatment, it's still going to be about, you know, consideration for side effects. I mean, I think it's the same. It's just now we're living it, you know, and kind of trying to say, well, what of the lists that we counseled you might occur is actually occurring? You know, what have we not been able to modulate? What do we need to shift about? And, you know, and sometimes it's things they need to do to help themselves, you know, and, you know, encouraging people through that process that might include a process of change. You know, maybe they didn't have...

you know, great sleep habits before they got, you know, put on cancer treatment. And now it's really coming to, you know, roost in terms of they're more fatigued because they're even, you know, having things that we're doing that are worsening their sleep. So I think that, you know, it does come into play still about side effects, but sometimes it is about self-care that may or may not be happening. Um, and we can help with that. Um, I would say, you know, treatment also does involve things that can cause pain and by no means would we ever wanna overstep that. We always ask the pain scale question, that's part of our intake for every patient encounter. And so if pain is part of what they're experiencing as part of their treatment, maybe post-operative or otherwise, or during radiation, then we do need to be mindful, again, going to the guidelines where we have some data of what can be helpful to help with pain management. And that's, you know, palliation during treatment like we've talked about many times.

Wayne Jonas (09:30.382)

Yeah, I think you're right. I think most of the guidelines, and there are more coming out, but there's two recent ones, are focused in the treatment phase. Pain management is a guideline that's come out from ASCO and SIO, the Society of Integrative Oncology and the American Society of Clinical Oncology, and then a new one that's just come out that has looked at anxiety and depression and what can be useful in those areas. Most of the time that focuses on how do you integrate that into the treatment phase. And then we also talk about survivorship. That's actually a discipline or a visit that you're supposed to have. It usually is done after treatment of the tumor has occurred, although the guidelines say it should be done from the day of diagnosis, but rarely is.

How does survivorship and after treatment play in terms of whole person cancer care?

Alyssa McManamon (10:31.12)

Yeah, I think this is different for every person, but I think thinking about whole person care or using integrative modalities during what we might call this period post-treatment or as you mentioned, survivorship. Other people use the term "thrivership" or "life after cancer." There's many ways to term this, but I think this is really where things get very individualized to the person because people have their own experiences and asking and finding out what's not working just being cancer free is not always working. And meaning that, that doesn't mean life is working. And it doesn't mean like they're having wellbeing. And I think that's where, you know, just really letting them talk and giving them an open place to express what it is that could be better. Because sometimes it's this idea that, you know, I don't know, maybe we should just be happy that we finished with the treatment and that we don't have cancer. That's...

Wayne Jonas (11:27.987)

Ring the bell. Right.

Alyssa McManamon (11:28.836)

That's not really, like, I think whole person care says, that's actually not enough, and we don't want you to, like, settle, like, as if that's enough, like, we're done here. And I think that's what this conversation can start to look like.

Wayne Jonas (11:42.958)

So I'm a primary care physician and so many patients have come to me and they're undergoing really top level oncology care, but a lot of their general wellness and health needs that could support them staying well and preventing other diseases often has been neglected. And I can see why, I mean, it's very busy just to manage, you know, the treatment of the tumor, especially with all the emerging data and evidence and new types of treatment.

It's hard to keep up with those, so I completely understand how the oncologist needs to focus on those types of things. But what I find is that partnering with the oncologist as a primary care physician so we can coordinate and dealing with survivorship things even during the treatment is a good way to do that. And so the partnership with primary care I think needs to be enhanced and there's some models out there where that's been very successful that I think could help solve this problem having that dialogue at the beginning and not simply waiting and doing a checklist after treatment has occurred.

Alyssa McManamon (12:47.688)

Mm-hmm, mm-hmm. Yeah, yeah, I think that makes a ton of sense. So, you know, the title of this episode is "When to Start Whole Person Care," but that's kind of a trick really, because what I'm hearing us say is that it's never too late. So whole person care is important right from the beginning, and it's actually useful, like you were just saying, kind of after treatment or when treatment is concluding. And so it's really useful across that whole trajectory. And...

Typically, whether it's true where somebody who's listening is either being cared for or works, typically we could say it oftentimes starts at the end after somebody completes the active cancer treatment, but it could be that we're missing out on where it could be useful and reinforced all the way through. I think we'd have to hear from patients, but it seems like that's how it could be more impactful if it's actually part of the entire sort of trajectory.

Wayne Jonas (13:39.254)

Well, we haven't talked about end of life and healing and wellbeing can still be achieved even when cure cannot. And this is another area where whole person care and many complementary therapies can help. We're gonna have a special episode on that later and invite a guest in that area to talk about how those can become integrated in. But don't forget, let's not forget that. It is an important part for many people in the cancer journey.

And we want to make sure that, you know, that end of life happens in the best way possible.

Alyssa McManamon (14:16.392)

Agreed.

Wayne Jonas (14:18.03)

So what's the impact of whole person cancer care? I think that's what we're often asked by oncologists. We're often asked by administrators who are saying, gee, you want me to implement these things, hire people and this type of thing. We've seen that places that do even the minimal of whole person care get better outcomes, both in terms of quantity and quality of life.

We've been involved in helping to study some of that, publish some articles on that. We've also talked a lot about the empowerment or activation of the patient in the care plan. When you get the diagnosis and go into the, see the oncologist, automatically the way it's set up now disempowers you. We become sort of the helpless people and the oncology team becomes the ones that are all powerful. And yet we know that engagement in their own care is a very important part of quality of life and survivorship in those areas. 

And so we think it's very important that engagement discussion, what matters to the patient and opening and educating the patient about that. There's a number of ways to do that. And you and I have just written a book that'll come out in the spring. And there is a section in that that's talks specifically about engagement, so we'll talk a little bit more about that. But there are a number of tools, and perhaps you can talk about how you use this in your own practice, such as the Personal Health Inventory to help have that dialogue and begin to engage the patient in what matters to them and empower them in being part of the care team. Could you mention some of that and some of the tools that you use for that?

Alyssa McManamon (16:04.62)

Yeah, so, you know, just like we talked about at the top of the episode, the Personal Health Inventory really invites the person to share about what matters to them, you know, in their life. And then the second, it's just a two-page PDF document that somebody fills out within just a few minutes. The second page really does invite, you know, them to consider, are there areas of health or well-being where they are, you know, feeling like they could move from low to high, and if there are, do they wanna pick a number of those? And we would never ask for anybody to pick more than a couple, and I think the form asks for up to three areas that they'd want to make some changes in. And so that's where we start. We start where people are really interested in doing something that could make them feel better. It's really an honoring for me of their intuition about what actually...

could feel better. They may be very low on all, maybe there's eight categories where they feel low. Maybe they can't eat because they're on treatment and they don't taste anything, but they also aren't sleeping, but they also have a low mood because of what they're dealing with. Maybe their whole list is kind of, I'm low today, but it might be that there's something that they, out of that list, really feel like they could make a difference in and or really want to make a difference in today. That's where we start.

It's in fact, again, driven by kind of their intuition about their health and what they are actually feeling might be useful. Going against that and trying to push something on someone is not gonna get anywhere. And I think that's pretty clear if you think about your own experiences, just how do we all motivate to do something? Well, certainly not when someone tells us to do something. It's much more motivating to actually move towards something that I personally say want as a patient.

And so I think that, you know, I, from there, the tools really involve, you know, saying, okay, well, let's recap what we just discussed. And for me, because people with cancer oftentimes are dealing with poor sleep or other things that are making it hard to remember things or hard to kind of focus, I actually send them a letter after the visit that kind of recaps the visit and what I heard and what they kind of said. And it might not be in so many, you know

Alyssa McManamon (18:20.292)

longhand form, but I bullet out kind of, you know, here's what you said you wanted to work on per se. And here are some things that might be supportive that we talked about. And that might be a listing of links or free resources on the internet. It might be that I print out a pocket guide, for example, from Healing Works Foundation about a particular modality.

Just so if it piqued their interest after the fact, they have some more information on that particular thing. And so that's how I start the conversation. And I actually call those my love letters, and I joke with patients about that. You're gonna get a love letter in the mail. That's just a joke that goes. But it is really a way to recap and help them understand that I heard what they were saying, that I've...

you know, taken it seriously and that we can move forward on what might be called a personal healing plan. But at that stage, I'm not yet making a personal healing plan with them, but we're moving in that direction.

Wayne Jonas (19:24.522)

Well, I like the term love letters. I might start using that myself. It is saying, I care about you, right? I care about you as a person in those areas. And you've hit it so nicely in that you have to see where the patient is at. And we see extremes. We see people fully engaged, over engaged, who might be doing things that they shouldn't be doing that might be harmful. And then we see those people that are so disempowered that they really need

Wayne Jonas (19:52.994)

the support and cultivation to get ready. And this is where behavioral science and the science of behavior change comes in. And you need to bring in, make sure that you and your team are aware of that. In many ways, the fundamental base of it is very similar to how whole person care occurs in primary care. Getting engaged in the basic things that we know, improve health and generate wellness and bringing those into

Wayne Jonas (20:21.102)

cancer care based on their values, shared decision making, and knowing that those decisions can change along the journey. It's not just a single conversation, but if it's never had at the beginning, then you can't go and revisit it. So having that at some time early in the journey is probably important for patients.

Alyssa McManamon (20:39.716)

Yeah, I think that's, you know, I think in oncology, we're trying to get people to the long game, you know, the long game of life and getting as much time and quality time as we can. And this is just a real long game. And like, I think it really, it's interesting, you know, just thinking about it. What you're saying to me just speaks to that, you know, we are in a long game in more ways than one. And this is just the wellbeing side of the long game. That's all it is.

Wayne Jonas (21:05.142)

I think you're right. And on our website are a number of tools and we're going to be adding more of those, the Personal Health Inventory that you just described, which was developed within the Veterans Administration. We've adapted it so there's a version that's useful outside of the VA also. And then having a visit that is focused on the whole person we call that the HOPE visit, a Healing Oriented Practices and Environments visit.

And that's where these kinds of discussions can go on, so that it can be part of the long game as you go into this.

Alyssa McManamon (21:43.228)

So yeah, like when to do it, I think you can't really go wrong doing it at any point. It's really a conversation and conversations can wax and wane. They can be re-picked up. I think you can't really do a conversation wrong. So if we think about it as a conversation, I think that helps. It helps to think about that this is a way to get care to be integrated and just being able to talk about it

in different parts of care, even if it's a conventional visit, to be able to start to have some parts of the conversation occur in a conventional visit, it becomes all the same and then I think then we're really integrating care that's whole person.

Wayne Jonas (22:23.687)

I think that's right. And there are a number of ways to do it, as you said. There's not just one way to do it. In the book that we've written that will come out in the spring, Healing and Cancer, we provide a number of examples from a leadership group that we helped organize a couple of years ago. And there are a variety of ways to do that. They each did it somewhat differently, but all of them focused on integrating the person-centered care with the disease treatment. And there you'll see a lot of best practices and we'll bring some of the tools that have come out of that to our listeners so that they can begin to incorporate that into their own care.

Alyssa McManamon (23:04.644)

Yeah, we encourage you to pick up a copy of our book for sure, Healing and Cancer, to learn more from those other centers.

Wayne Jonas (23:12.766)

Well, thank you for listening to How Healing Works.

Alyssa McManamon (23:15.352)

and stay tuned for the next episode.