Cancer Centers Without Mental Health Options Should Use Online Resources

Teresa L. Deshields, PhD, ABPP

Professor, Department of Psychiatry and Behavioral Sciences

Rush University

Chicago, IL

Q: How has mental health care for patients with cancer changed over the past few years?

DESHIELDS: In 2015, the Commission on Cancer started requiring distress screening in cancer settings—all settings, so not just the academic centers, but [also] the community cancer centers.¹ That started to normalize the conversation about distress. But for some places, it was still just a box to check, something we have to do; it wasn’t something that they utilized as fully as they could. But I think that started to make it a normal part of the conversation in a cancer clinic.

More recently, the pandemic certainly showed us what can happen when people are challenged with mental health difficulties, especially in a situation where there‘s isolation. Many patients with cancer told me that the pandemic felt like normal life for them; with being immunocompromised, they felt like they were already having to isolate, and that they were segregated in this medical world with treatment. We’ve become more aware as a society about the challenges of addressing mental health struggles since the pandemic, but there [are] still issues and difficulties.

Everybody talks about access in the cancer setting, but there’s also the challenge that many places get very caught up in moving quickly from diagnosis to treatment to survivorship. I get that, and if I were somebody with a cancer diagnosis, I would want that too. But I think sometimes in that haste, we don’t stop and check and see how people are doing and how they’re impacted by this whole experience. That remains a challenge because of a sense of urgency and time pressure. For various reasons, that remains a challenge. It’s better, but there are still opportunities.

Q: How does treatment lead to poor mental health outcomes? Do adverse events or length of therapy factor into what you have seen with patients’ mental health?

From the very beginning, the diagnosis can be overwhelming for many people. It’s not something they have practice with, necessarily, especially if they’ve been generally healthy.

All of a sudden, there’s all this new language and all these new words. That can be a difficulty. In my years of working in oncology, I’ve seen this wonderful growth of treatment options and all these targeted therapies. It’s marvelous, all the options, but from a patient perspective, some people find that overwhelming. Not to say it was better when there were 1 or 2 options, but it was simpler.

That idea of sorting through options can be overwhelming, and there’s a lot of pressure with it. They feel like they have to get this right. It’s not a neutral prospect; [they feel they have] to pick the right path. I think those things are difficult. I’ve also had people tell me that there [are] options, but they hate all of them. What good are a lot of options when they’re all bad? That can certainly be a legitimate perspective on the patient side. Those things all contribute to the stress.

Once patients are in treatment, symptom burden is a big deal. It’s been one of my areas of research focus, and the higher the symptom burden, the more impact on the patient’s quality of life. There has been some literature that suggested there’s an impact on patient survival; that [could be] because patients can’t tolerate it, so they don’t continue with the treatment. Symptom burden can impact mental health—the amount of suffering that you have to [go through] with your treatment.

Q: What are the most readily available resources that community oncologists could give to patients?

AstraZeneca had this wonderful idea of creating a resource for patients with blood cancers and their loved ones.² I was very fortunate to be able to help with that. It is such an important resource, especially for those cancer treatment centers that aren’t well resourced in the supportive care space or the mental health space. This one-stop shopping provides education, which can help with normalizing a person’s experience. There’s the patient voice, there’s a caregiver voice; you get to hear from other people—not just third-person knowledge—you get to hear from people who’ve shared your lived experience. There’s also a wonderful library…of educational but also support resources. If you want to meet other people who are on your same path, [discover] how to find support in that way, peer support, and how to find counseling support, it’s a wealth of resources.

Many community cancer centers aren’t [equipped] in terms of their supportive care team—some are, but many struggle with that. They tend to put their money toward the treatment resources, which makes sense. This [resource] can be a godsend; this is a place that those treatment centers can direct patients to help them find other resources. They can also go on those sites to help navigate a patient to some resources, to [make them] become aware of the wealth of resources available.

Q: What is something that oncologists can immediately recommend or implement within their practice?

Hopefully, in any community cancer center, they have done a survey and realized what their local resources are. If they don’t have resources in house, trying to identify some providers that they can work with [is important]. For me, I [prefer someone who] has experience in the cancer space because it is a little different. But a good mental health provider is better than no mental health provider, so if you can’t find somebody who has the cancer background, [that is OK]. Hopefully that community cancer center can identify some local resources to recommend to patients.

If not, patients can always go to their primary care provider and ask about resources. There’s also this library of resources through the [AstraZeneca] mental health resource hub where people can access counseling support through patient advocacy organizations. Many of those provide that virtually.… Another thing to remember is that nowadays, since the COVID-19 pandemic, many of the mental health services [have gone] virtual. If they are sick, immunocompromised, don’t want to leave the house, or can’t leave the house, many people can get virtual care, [in terms of] mental health.

Another resource is the insurance company; [patients can ask]…them about mental health resources. But hopefully a community cancer center can establish their own local list of some resources they can provide. Community centers can use the mental health resource hub to help them find some resources to give patients. That’s one of the things with distress screening: We’re asking patients, and if they tell you they’re distressed, it’s awful to then not do anything about it. Sometimes places don’t ask because they don’t know what to do. They don’t know what to suggest, so they don’t suggest anything. But if a person is telling you they’re distressed, please help them to find the support that they need. Not everybody can afford to have it in house, but you can find it. It is out there, and this resource hub is a great assistance in finding that.

Q: Is the mental health resource hub something that should be pursued more across the board?

What I love about [this one] is that it is specific to blood cancers. That’s not to say that the resources in there are only good for people with blood cancers, but sometimes people with blood cancer can feel like they might not have as many opportunities or [as much] awareness [as patients with solid tumors]. So this is tailored to that group of individuals and also their caregivers. It’s able to address that feeling of being overwhelmed. There are all these medical visits, tests, specifics of their illness, and why a particular treatment has been recommended. This is one-stop shopping for what you need. If you want to hear from other patients what their experience has been like, if you want to get some education about your diagnosis, if you want to find support, it’s all in one place, which makes it easy.

I have also been working in the cancer field for over 20 years, so I’ve watched that transition from the cancer information center, where you went and there were all the pamphlets on the wall. Now people want information faster than that. They don’t want to go somewhere and get the right pamphlet. How much space [is needed] for all those tailored situations? The online opportunity has made…tailoring accessible. There are still patients who are not comfortable online, and so that may be something a community cancer center can do—[show patients] how to get onto this site.

Another thing is, so many people have talked about all the scary things you can find online after receiving a cancer diagnosis. Knowing what is vetted and having reliable information is a real need. Having a place like this to go to where the information is reliable, dependable, and not just what somebody has decided to post about their individual experience [is vital]. I always find that to be a tough one. You love to see people who are eager to know more, but they can get themselves into some scary corners sometimes looking [for information online].

Q: Is there a better way for the oncologist to talk to the caregiver to help guide the patient in the right direction?

I feel [that caregivers] are an essential part of this whole process, and they are very neglected. You think about all the medical treatment that now happens at home. We couldn’t do this without caregiver support. But nobody tends to the caregiver; socially or in the health care setting, they tend to be fairly neglected. Their lives have been turned upside down and they are such an important part of making this all work. This resource also addresses caregiver needs, but there’s so much more we need to do in that space.

The caregiver is a source of information. In a study I did, we interviewed patients as they were going into their visit with their oncologist. We asked them what problems they were having and what they planned to talk with the oncologist about. Then we asked them after their visit what they actually talked with the oncologist about. We found that anything psychological and sexual, if they were having those kinds of problems, they maybe planned to discuss it, but rarely did discuss it.

It is an issue, that hesitance to bring [something] up when people are struggling. There’s a lot of pressure to be the good patient, not a complainer, not to look weak. I have seen situations where sometimes you might ask a patient, “How are you doing?” They say “fine,” and then the caregiver sitting…in the background [is disagreeing]. “Are you having any problems with pain?” [The patient says no,] and the caregiver says yes. The caregiver can be a valuable source of information and may be less constrained by that stoicism than the patient.

Can we welcome the caregiver into the conversation? I think that would be helpful to welcome them into it. Some caregivers have told me they’ve had the experience [of] being shut down in a medical setting. They can be a great source of information. They are the person helping this all work, and what can we do to support them? Some people advocate for distress screening for caregivers, but hardly anybody’s doing that. We’re still struggling with distress screening for patients. I think it would be a wonderful direction to move in to see how caregivers are doing and trying to find out how we can support them.

Q: What challenges remain regarding helping to address the patient’s mental health? How are we trying to overcome that for the future?

Of the challenges that remain, I would say access. That’s something that as a society we’re going to have to grapple with. How do we beef up mental health resources? How do we make them more practically accessible? To the stigma issue, we’re getting better as a society and not stigmatizing mental health issues, but it’s still a problem. I hope we will get better about that. Something that I think a health care professional can do is to normalize that. If a patient does happen to bring it up, to normalize it, tell them that’s very common and not an unusual experience. Thank them for bringing it up. Then [say], “Here’s what we’re going to do about that. You brought it up, and I’m going to help you by figuring out what to do about it.”

The other thing is to encourage that from the beginning. You could say something like, “This is going to be difficult; we’re going to be working through this together, and I need to hear from you about how this is impacting you physically, mentally, [and so on,] because I want to make this as easy for you as possible and I want to hear how it is for you.” Encouraging that disclosure and helping them dismiss that idea patients have about not wanting to be the complainer or the whiner, [will hopefully help patients].

I think we’re going to have to figure out better ways to support caregivers. The conversation is starting. I would like to see more; I love that the mental health resource hub has them as a target audience as well. I’d like to see us do more there. We’ve [improved since] the days when nobody talked about it. People do disclose information in their social network more easily [now]. But there still can be sometimes that feeling of being alone. There [are] some people who don’t want to tell others. I’ve had several patients who do not want to tell people, so they cut themselves off from support. But as mentioned, in the mental health resource hub, you can hear patient voices without having to go to a support group or a chat room or a therapist. You can hear the patient voice, at least, and have virtual exposure to how other people are dealing with this—not just the theoretical but the lived experience.

It’s getting better all the time and now we have more virtual resources and awareness of virtual resources. I think many people who were scared of computers learned how to use things like Zoom [during the pandemic], so they could stay in touch with family, and they figured out how to check in for appointments. There are still challenges, but things are better.

_REFERENCES

_{1. Lazenby M, Ercolano E, Grant M, Holland JC, Jacobsen PB, McCorkle R. Supporting commission on cancer-mandated psychosocial distress screening with implementation strategies. J Oncol Pract. 2015;11(3):e413-e420. doi:10.1200/JOP.2014.002816}

_{2. Blood cancer, mental health, and well-being. Understand Blood Cancer. Accessed November 6, 2023. https://bit.ly/47ivc3y}