Behavioral Health Care Gaps Remain in Oncology Care
An expert with Allegheny Health Network discusses the value of behavioral therapy and how access and stigma often play a role in preventing patients from receiving this form of care.
Although significant strides have been made to incorporate behavioral therapy into oncology care, gaps in this type of care still exist, explains Matt Iwaniec, PsyD.
In an interview with Oncology Nursing News®, Iwaniec, a licensed clinical health psychologist with the stem cell transplant and CAR-T therapy program at Allegheny Health Network, underscored the value of integrated behavioral health programs and the biggest challenges in helping patients receive this form of supportive care.
Oncology Nursing News®: Could you speak to the value of incorporating behavioral therapy into the treatment plans for patients undergoing cancer treatments?
Iwaniec: We know that cancer is one of the most stressful experiences that anyone can go through in life—particularly [with] types of cancer that have a high rate of recurrence. People who are in survivorship for years might be struggling with anxiety and worrying about having a recurrence.
Generally, people are not well prepared to deal with it; it's not something that you learn to cope with or deal with in school. Usually when people receive [a cancer] diagnosis, it comes pretty suddenly. Therefore, people who are working in oncology really need to have an appreciation of that and be aware of that.
Psychologists and behavioral health professionals have a unique skill set that we can bring to the practice of oncology to help patients, families, clinicians, doctors, nurses, teaching assistants, nurse practitioners, etc. deal with the stress of cancer—because it is not just stressful on the patient. It is stressful on the whole family, and it is stressful on the teams that are treating them too.
[I believe] integrated behavioral health care is the way to go for the future. It should be a standard part of treatment for everyone involved in the process.
Could you break down what behavioral health services look like?
There is going to be variability across the board with where patients are receiving treatment. Some people don't have access to behavioral health treatment—particularly in rural areas, there may not be a psychologist or a clinician to see.
In a fully integrated program, [patients] meet with a psychologist on their very first day that they meet with the oncologist and then work with a behavioral health professional throughout their entire [treatment]. The idea is for behavioral health [to] be fully integrated, meaning you get a diagnosis, and you are introduced to the mental health professional who's working in the clinic who has an established relationship with the other people working in that clinic. Then, you can orient them to what behavioral health care looks like, what services are available to them, how they access those services, how often they would see you, what you would be working on, etc.
What is more typical [in traditional institutions] is that people will see an oncologist and they might be screened for some type of emotional distress. Maybe they have symptoms of anxiety or have symptoms of depression, and [therefore] a nurse or provider will refer them to a behavioral health provider that's outside of the clinic—somebody else in the community that they might have a somewhat distant relationship with. They're not working directly together, but they're aware that they're out there and they try to funnel patients into that location.
Then, the patient is kind of responsible for contacting that person; they are [not] getting introduced to that person for some time. That distance creates a barrier to the patient receiving that care, because there's a physical distance, and there's a temporal distance between the time they get the diagnosis and they see the provider. There may be a lot of unanswered questions: Will insurance cover it? How do I arrange transportation? Right now, [unfortunately] there is just great variability in what is available to people and how they access it.
What are some popular behavioral therapies? How can they help improve patient outcomes?
There is a lot of research that supports the use of cognitive behavior therapy [CBT] and acceptance and concomitant therapy (ACT) for cancer-related distress. CBT has been around longer. ACT is a newer form of therapy that grew out of that CBT tradition.
The basis of CBT is that how you are thinking connects with how you are feeling emotionally and physically, and [therefore] what you are doing behaviorally. Thoughts, behaviors, and feelings are all interconnected. If you are struggling emotionally with symptoms of depression, or symptoms of anxiety, those can be influenced by identifying patterns of thinking.
Whenever somebody sees a therapist for the first time, there is usually an intake process where you get to know the person. The psychologist will take a history and [determine] whether [a patient] meets clinical criteria for a mental health diagnosis. Then they will work with the patient to establish a treatment plan.
With CBT, the beginning of that treatment plan is usually education about that CBT model that I just briefly described and then getting the person to understand how this is working for them. CBT is usually highly structured. First, there is an educational component, then there's an agenda for the session. [We establish] what we want to cover for this hour that we're together, and at the end of the session, there's a homework assignment.
For folks first starting out in CBT, that homework assignment is starting to notice and track different situations that come up [through] different thoughts they have in different situations, and then how they respond to those situations and thoughts emotionally and behaviorally so that the person begins to understand or better understand that connection between thoughts, behaviors, and emotions.
Once they're able to understand that and observe [their own thoughts, behaviors, and emotions], then you can start to do more therapeutic work.
[There is something that is common in cancer-related CBT]: people often have a fear of becoming a “burden” to their families, or thinking that their families view them as a burden. Therefore, when situations come up during the week, such as if they need a ride to an oncology appointment, they might think, “I'm a burden,” or “I'm putting ‘so and so’ out,” and then the emotion of sadness or guilt comes up.
Family members are often actually pretty happy to help out because that helps them cope with the person's cancer too. They feel like they're being useful, productive, supportive, etc. They [typically] don't mind doing these things for the patient—it makes them feel empowered, but the patient may not perceive it that way. They feel as if they are a burden.
We help the patient to identify, “This is the thought you're having. This is why you're feeling guilty.” [Then] we look for evidence to refute that, and we help them label those types of thoughts. [We call this] jumping to conclusions.
Somebody can learn to do this on their own in real time. They can notice, “Oh, I'm feeling guilty about this appointment, because I'm thinking of [being] a burden. [But] I think about the evidence and that's not true. What's true is that this person is glad that they can be of assistance.” You can then change the emotional reaction from guilt to one of appreciation or gratitude. This helps the person cope with that situation.
The behavioral part of CBT also [involves] getting people to engage in behaviors that are helpful. Usually, the recipe for that is something that they either enjoy, or something that makes them feel competent. Whenever a patient is dealing with adjusting to cancer,
it's common for people not to be engaging in things that they enjoy, or to feel competent, because of all the chaos that has happened in their life. Therefore, we will plan and schedule activities to help the person fully engage in things that they enjoy or help them feel competent. That boosts people's mood too.
The basics of CBT are really present focused. It’s not what a lot of people imagine therapy to be where they go, and they lay on a couch, and they talk about their childhood. It's about how your actions and thoughts are functioning for you right now and how you can be flexible with them to manage the stress and manage the difficult emotions to the best of your ability.
ACT is a little different. It does focus on thoughts and behaviors like CBT does, but rather than identifying thoughts as “jumping to conclusion,” and then challenging them with evidence, we teach people our mindfulness skills to take a step back when they notice that is happening, unhook from it, and to accept the reality. [To accept] that this is a thought that I have right now in this situation. Then we are fully engaged with behaviors that they value. Although someone might think that they are a burden, we can [now] understand where that [feeling] comes from, let it be there, and then turn our attention to having a conversation with somebody that you love about something that is important to you.
What challenges have you faced with some of these therapeutic approaches?
The biggest challenge for these therapies is incorporating them into what the patient is already having to deal with. They’re feeling ill, they're feeling fatigued. They're feeling anxious and they're oftentimes not sleeping well. They have a lot of appointments, tests, and this can feel like just another thing that [they] have to do on top of everything else that [they] have to do to deal with this cancer.
The therapist tries to address that challenge by using motivational interviewing to get the person to realize how doing this little extra bit of work will benefit them in the long run, how it is in line with what they want and what they need and their reasons for doing it, and then reinforcing how it's helpful.
Generally, the 2 biggest challenges for engaging people in these therapies in the cancer world are access—being able to connect the therapist with the patient—and then helping [patients] do [their] own therapeutic work between the sessions with everything else that they have going on.
In recent years, how have the emotional and mental needs of patients alongside their physical treatments been addressed?
There is definitely a greater appreciation for the need. Consequently, there has been more dedication of time and resources to hiring mental health professionals, trying to get them integrated into clinics, trying to treat the patient as a whole person every time we have a connection with that patient, etc.
The move has certainly been away from like a strictly medical model toward appreciating the patient as a holistic individual that has these behavioral health needs. Attitudes are changing. Access is improving. The discipline of health psychology and psychosocial oncology is producing more research every year to support these ideas and how these interventions can be effective. With that research under our belt, it's easier to advocate for these resources, whether they be from hospital systems or from the government. There has been progress there.
What unmet needs still exist within this space?
There is still a big gap between availability of mental health care and the need for mental health care. It is a problem that is endemic everywhere, throughout through all our systems. We are on this path to better integration of mental health care from start to finish with the patient. There are examples of places where that is happening, but more often than not, behavioral health care is not fully integrated [although it] needs to be. The 2 biggest impediments to that are having the [proper] staff, but also getting the general patient population to acknowledge that mental health care is a part of cancer health care.
Although we have made great progress within the field of oncology in appreciating the need for mental health care, the patient side hasn't necessarily made that progress. [Some] patients do not want to be labeled as “crazy” or needing a psychologist. [Often], they see mental health care as something that occurs separate from physical health care. [They might think]: “This is a type of treatment for a different type of person, that is not me.”
Therefore, there is a stigma there to mental health care from the patient. That puts up a barrier for the patient's willingness to access that. That is a very important part of this conversation: using all resources to normalize the need for mental health care for all people. [Getting the message across that] talking to a therapist while you have cancer does not mean that you are crazy; it does not mean that you're not coping well or that you are doing a bad job of managing your cancer and everything that's going on around you. Distress related to cancer is normal, it is part of the process, and [it is helpful to] work with a person largely in a coaching capacity to talk about how you can best use your own motivations, reasons, and own resources to better understand how emotions and thoughts and behaviors all connect and can be managed.
Breaking down that stigma is the biggest piece of this and the biggest gap we need to change.
In your opinion, do patients often require different therapies or different approaches, depending on if they're in the inpatient or outpatient setting?
Usually, when someone is in the inpatient setting […] that can be a good amount of time to introduce yourself to somebody, develop a rapport, and start working on some of these skills. However, you may only meet with a psychologist in the hospital a handful of times. If you're living physically away from the hospital and our elder, you're probably not going to come in to see them for physical appointment. However, through telehealth, it has made it easier to follow up with people where there's a geographical barrier. Generally, inpatient therapy is more short term, supportive, and focused on tolerating distress.
On the outpatient side, if you're doing CBT, you might have anywhere between 10 or 20 sessions occurring once a week for 1 hour, where you gradually start learning to build these skills. Then, you transition from a place where the therapist is giving you a lot of information, support, and training to more where you're becoming more independent, and the therapist is doing more coaching or support along the way, and you need the therapists less and less.
The focus is different. The timeframe is different, but we can use CBT and motivational interviewing principles in both contexts.
Is there anything else that you would like to discuss?
[A lot] goes back to that idea of normalization and stigma. If we can make psychologists and behavioral health professionals’ part of the entire process from start to finish, that is going to help in breaking down [that stigma]. [We need] everybody as part of the oncology team to reinforce this idea that distress is normal and there are ways of coping with it effectively.