Closing the Communication Gap Is Key to Integrating Whole-Person Care Into Oncology

Wayne Jonas, MD

Clinical Professor of Family Medicine

Georgetown University

President and Founder

Healing Works Foundation

New Alexandria, VA

Targeted Oncology: What is the treatment goal when you talk about whole-person care?

JONAS: I’m a family physician; I’ve been doing what I [believe] is whole-person care since I started practicing medicine 40 years ago. And yet, primary care and other types of care are getting drawn away from...an approach that looked at [the patient’s] mind, body, social [factors], and spirit, and brought all of that into the healing process.

We get more and more focused on specific physical things and providing pills and procedures to them, then the [patient as a] person tends to get neglected. I call that whole-person care, and we started a new foundation...with the goal to make it easier for the mainstream to [consider these parts of care] more routinely in practice by incorporating questions, management resources, and models of care that address mental health issues, lifestyle, and behavior issues, which we know have a huge impact on health and well-being.

[Along with] the development of chronic illnesses, including cancer, [there are] issues around incorporating what is important to the patient and what matters to them into the care management system. So, it's not just starting with, “What’s the matter with you, let me see if I can treat it,” but [asking the patient], “What matters to you? And how do I align my health care so that you can live a better life?” I think in cancer [care], that’s an essential question we need to ask people all the time. What is it they want to get out of their treatment, because a lot of treatments we provide in cancer are focused on trying to kill the tumor. It’s often a race between the tumor and the person, but we want to balance that out. We want to know what goals the individual has, and make sure we incorporate those not only into our research but into our practice.

Where do you see this fitting into the landscape of cancer care?

The Healing Works Foundation [HWF] focused on doing this in primary care with very good results.¹ There’s a lot of uptake now on the national level...to shift toward whole-person care…. We ran networks to help teach clinics how to do this better and easier...and it was very successful, but one of the messages we heard in those practices is that we should do this in cancer [care]. It’s important, and it wasn’t just coming from primary care, as this is something that oncologists have been saying for quite a long time.

It’s been a while and the implementation of [whole-person care in oncology] has been spotty and difficult, not because oncologists don’t want to take care of the whole person...but it’s difficult to do it in the busyness and in the onslaught of new knowledge around treatment [for patients with cancer], and the management of that treatment, which is already complex enough. So the amount of time, effort, and expertise in going beyond that, even though the data are growing, [makes whole-person care] a challenge. We decided to try to build off the success we’re having in primary care and see if we can create an initiative to cultivate this area more in oncology to make it easier, so it’s routine and regular.

How has the communication gap between patients and oncologists surrounding integrative care developed over the years?

There’s some new information in this survey that is different than what we’ve known for a while that I think is important. We’ve known for years that there’s a gap in communication [between the patient and the oncologist], especially around integrative oncology, and part of it had to do with the fact that there wasn’t a whole lot of evidence [for integrative oncology]. Oncologists weren’t going to go there if there wasn’t any scientific basis, but patients were just trying to find something for themselves. When they get a cancer diagnosis, they often go out...and get all kinds of information, the validity of which is questionable, as they usually don’t have the ability to evaluate that. So there’s always been this communication gap between patients who have gone out and sought information about [integrative care] and the oncologists who said there’s not any good science behind it.

However, that has changed quite a bit over the last 10, and especially the last 5 years, because there is now growing evidence in these areas, not all of them by any means, and that was reflected in this survey, too. But in many areas [of integrative care in oncology]...it is now reaching national guideline level. In fact, there are national guidelines out on this that have come out from national bodies like American Society of Clinical Oncology [ASCO]...about when and how to use nondrug approaches, behavior and lifestyle approaches, social and emotional management approaches that work in [oncology]. I think those things have begun to help oncologists realize, there’s a gap here, and there’s evidence they need to be part of [helping to] close that gap.

What results from the survey surprised you the most?

What was surprising in this survey, that I haven’t seen in other surveys, is a misunderstanding by oncologists as to how much interest there was in this area. Only about 13% of oncologists said that their patients were interested [in integrative care], and it’s closer to about 60% to 70% [of patients are interested].² I think part of the reason for that [gap is that physicians] don’t talk to patients about it, and the communication gap has produced an expectation that’s not accurate. That’s a new element to this that [we observed].

The other thing is that most oncologists said this is important in the area of so-called supportive care and if somebody gets treated, they start to get [toxicities] and quality-of-life issues...and we need to support that or provide palliative care, so they’ll wait until after they’ve treated the cancer. It’s not a preventative approach...but this survey showed that [a majority] of patients want to talk about [integrative care] at the beginning of cancer care. [They don’t] want to just talk about symptom management, but what can they do to be engaged and empowered and involved in helping treatment go better and make their quality of life better. They want to do that right at the beginning of treatment and want it to be built into their plan, not something that is done after the fact.

Where should this supportive care come from?

A lot of these types of [services] are not provided directly by the oncologist; they’re provided by the team. The team that’s involved in supportive care, integrative care, palliative care, psychosocial management, physical exercise, nutrition—all those areas [of integrative care]—come from team members who are part of services provided in many cancer [treatment centers].

Other surveys have shown that many cancer centers, depending on their size, have those resources available, but they tend not to be coordinated. So unless the oncologist does spearhead [these efforts] and says these are important so let’s make sure this is part of [the patient’s] plan...then that coordination doesn’t happen. It’s a 2-step process: The oncologist has to say this is important and...have some dialogue with the patient around that, and then have a coordinated way in which those resources, which are often available, can be accessed by the patient and track their [progress] in those areas. That [last part is usually] done by others on the team, and increasingly, that’s the way oncology is going. Cancer is a complex condition that affects the whole person, not just the tumor, and it requires a team to provide optimal care.

What are some of the barriers to closing this communication gap and integrating supportive care into oncology?

One of the biggest barriers was there [wasn’t] enough good evidence for doing this. Those days are gone now. If you look at whole-person care and not just an individual modality, like acupuncture for example, we now know that the biology of cancer has a major influence [from] the [patient’s] behavior, lifestyle, and environmental [factors]. We call it the tumor microenvironment, but it’s influenced by the tumor macroenvironment. We know that behavior, lifestyle, and the macroenvironment influences things such as exercise, nutrition, stress, which all have an influence on the hallmarks of cancer. The evidence is there.... So for an oncologist that wants to make sure they apply good evidence–based practice...there’s now good evidence for pain management that says yoga and acupuncture should be a standard part of the care. There’s a joint Society for Integrative Oncology/ASCO guideline on fatigue, and its management had several approaches, including things like exercise, for example, an activity that mitigates fatigue and helps improve quality of life, which is a huge area.³ Now the oncology community needs to catch up with this, which I think is the biggest barrier, not so much lack of evidence but utilization of the evidence that we have.

How can these barriers be overcome?

We need methods to do it. In practice, we’re busy, we’re doing lots of stuff, and we need the easy button. We need a way of bringing this up in the discussion...and then plug that into the resources that are available to support those areas [the patient identified].

There are a number of tools we’ve developed at the HWF and we [implemented them] with a network of oncology clinics over 2 years, around the country. We took the tools that were being implemented in primary care, and we translated them into oncology care. Those places included top clinics around the country...and a number of community clinics, and they began to test these tools out and put these resources into their programs. We need those kinds of tools, and at HWF we’re correlating a lot of those tools to make them easier to access....⁴ I think just getting it into your practice itself, though, is [a challenge still], and there is evidence it is another barrier to [utilizing these tools].

I also think a lot of these things have not been traditionally covered by insurance as a standard part of care. We often get questions, in all medical settings, such as how to pay for the time and the resources and the teams to do this. That’s a very important question. Centers for Medicare & Medicaid Services has been working to try to help address that problem. After a report in 2013, they came up with something called the Oncology Care Model, which was to pay for bundled care or value-based care, that allowed for these more holistic services to be brought into the care package.⁵

There are efforts to move in that direction and many of the centers we’ve worked with found ways to cover these kinds of practices, maybe not all of them, but to support them and prevent the additional financial toxicity that occurs from cancer care. An important reason why [integrative care] needs to be discussed with patients is because they may be going out there purchasing all kinds of stuff that’s not very useful, that might be harmful, and just adding [to their] financial burden.

_REFERENCES

_{1. Rosenbaum E, Gordon AE, Cresta J, Shaughnessy AF, Jonas WB. Implementing whole person primary care: results from a year-long learning collaborative. J Am Board Fam Med. 2023;36(4):542-549. doi:10.3122/jabfm.2023.230007R1}

_{2.Support for Integrative Oncology Grows. Healing Works Foundation. October 11, 2023. Accessed November 22, 2023. https://tinyurl.com/yzv26ee8}

_{3. Lyman G, Greenlee H, Bohlke K, et al. Integrative therapies during and after breast cancer treatment: ASCO endorsement of the SIO clinical practice guideline. J Clin Oncol. 2018;36(25):2647-2655. doi:10.1200/JCO.2018.79.2721}

_{4. Whole-Person Care. Healing Works Foundation. 2023. Accessed November 27, 2023. https://tinyurl.com/bd2b6mzs}

_{5. Oncology Care Model. Centers for Medicare & Medicaid Services. May 31, 2023. Accessed November 27, 2023. https://tinyurl.com/7bp6vkyf}