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In our podcast with palliative care pioneer Susan Block, she identified the psychological/psychiatric aspects of palliative care as the biggest are of need for improvement.  As she said, when you think about the hardest patients you’ve cared for, in nearly all cases there was some aspect of psychological illness involved.  That rings true to me.

Today we talk with two psychologists who are deeply invested in addressing psychological aspects of care for people living with serious illness. Elissa Kozlov, a geropsychologist and director of a new population aging MPH at Rutgers, surveyed AAHPM members, and found that doctors reported major shortcomings in level of comfort and knowledge caring for patients with psychological illness. She conducted a systematic review and meta-analysis of 38 palliative care trials, finding that many excluded people with serious illness, and a lack of impact on psychological outcomes.  Analyzing the Health and Retirement Study, she found 60% of older adults screened positive for depression in the last year of life (related study here).

Des Azizoddin is a psychologist at the University of Oklahoma primarily focused on pain for people with cancer. Des delivered a plenary at this year’s National Palliative Care Research Center’s Foley retreat. She began by asking, “Raise your hand if you think there is a psychological component to cancer pain.” All hands go up.  Then, “Keep your hand up if you frequently refer patients with cancer pain to a psychologist?” All hands go down.  Unfortunately, we lack the financial structures to reimburse psychologists that would incentivize widespread inclusion on palliative care teams.  Because we live in the world as it is, not as it should be, Des has helped develop an app (link to pilot trial hot off the press!) to help people with cancer pain engage in cognitive behavioral therapy in bite sized 3-4 minute sessions (there are other apps available now developed in the VA, who have been leaders in the psychology/palliative care space).  Des additionally studied stigma associated with opioid use among patients with cancer in the context of the opioid epidemic;  depression, pain catastrophizing, recent surgery and opioid use among people with cancer.

And, we talk about these issues and more (with far more nuance than I can include in this post).

Kudos and credit to my son Renn, age 15, for the guitar on Heartbeats (hand still broken at time of recording).


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Moderators Drs. Widera and Smith have no relationships to disclose.  Panelists Elissa Kozlov and Desiree Azizoddin have no relationships to disclose.

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Eric: Welcome to the GeriPal Podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex, who do we have with us today?

Alex: Today we are delighted to welcome Elissa Kozlov, who’s a geropsychologist and assistant professor in the Department of Health, Behavior Society and Policy at Rutgers School of Public Health, and is also director of a newly developed MPH in Public Population Aging. It’s an asynchronous online program, and I know Elissa from the K76 Beeson meetings. This is like a Cadillac career development award for aging researchers, and I know she’s a fantastic singer, so I’m sad that she’s not able to join in the singing along because it doesn’t work asynchronously via Zoom. Welcome to the Jerry Powell podcast, Elissa.

Elissa: Thank you. Happy to be here.

Alex: And we’re also delighted to welcome Des Azizoddin.

Des: Thank you so much.

Alex: She’s a pain psychologist and assistant professor at the University of Oklahoma Health Sciences Center and the Stevenson Cancer Center, and she is a creator of the STAMP CBT app for cancer pain. Des, welcome to the GeriPal podcast.

Des: Thank you, and so excited to be here.

Eric: So you could probably tell we’re going to be talking about mental health issues. In particular, mental health integration and issues in pain and in palliative care. I’ll be working on that title. But before we get into this big topic, somebody has a song request for Alex.

Des: Yeah, I love the song, Heartbeats by Jose Gonzalez. I think anytime I’m in kind of a funky mood or dealing with something odd or different in life, I listen to that song and it really helps me process whatever those emotions are, and I actually walked down the aisle to that song to marry my husband.

Eric: Oh, wow.

Des: So yeah, lots of big things.

Elissa: No pressure, Alex. No pressure. [laughter]

Alex: No pressure whatsoever. [laughter]

Elissa: If it doesn’t make her cry, you didn’t do a good job. [laughter]

Alex: Now, I have seven fingers for those of you who’ve been listening, up from six because I’m in a splint instead of a cast. So I’m now playing a little bit of guitar, but I had to retune it creatively to do this. So for those of you listening, you get my son Ren, the younger one, 10th grader, playing guitar on the audio only version of the podcast. And for YouTube, here we go, a little bit of heartbeats. (Singing).

Eric: Wonderful. Thank you, Alex.

Des: Love it. Thank you, thank you.

Eric: So let’s dive into the topic. Elissa, I’m going to turn to you. So how big is this problem? How common are psychological issues like depression, anxiety in the palliative care setting? And also, if we can also talk about cancer care setting.

Elissa: They’re really prevalent. I mean, we can talk about the research backed numbers, the epidemiology numbers, but I also think that your listeners can just pause and reflect and think how often do they encounter symptoms of depression, anxiety, pain, insomnia, trauma? All of these things happen so regularly at end of life, and I think our gut tells us, “Well, it’s end of life.” This is sort of to be expected, but it’s not. We shouldn’t be suffering like this at the end of life. I mean, we can go into some of the numbers from one of my studies with Claire Ankuda. We saw that around 60% of people were screening positive for depression in the last month before death. That’s a lot. That’s a lot of people dying depressed.

Eric: And anxiety was really common too in that paper. Is that right?

Elissa: Yeah. There was another paper I wrote with Dr. Fong Pinkwell, who we were seeing a lot of anxiety, around 43% of anxiety, I believe. It’s high, it’s too high.

Eric: So this brings up an issue for me because I don’t think I am seeing it in 60% of my patients as far as depression. Is it that they’re clinically depressed or that they’re understandably sad at the situation that they’re in or specific issues? Or is it that I’m just not screening?

Elissa: Well, I don’t know what you’re doing in your practice, but I think you just touched on a lot of the trickiness around mental health assessment at end of life or in the context of serious illness. A lot of those symptoms of depression can also be attributed to different kinds of physical symptoms. If you’re low energy, well, is that the illness or depression? Or if you’re having trouble sleeping trouble with your appetite, is that the illness or is that depression? It’s hard to tease those apart, but luckily there have been dedicated mental health researchers who have spent their careers trying to figure out how to tease those apart in medically ill and older populations. So how we screen for mental health distress is really important. Where we attribute those symptoms, the etiology of those symptoms, is it has this person had a lifelong history of depression that’s getting exacerbated in the context of their illness?

Is this a new onset depression? Is this an adjustment disorder? We might say, “Of course you’re sad, you just got a very serious diagnosis.” But I think you can also think of a lot of your patients who are not showing symptoms of sadness in the context of their serious illness. They might be disappointed, they might be having a hard time adjusting, but they’re still talking about things they’re looking forward to. They’re still engaging fully with their family and with the activities and the hobbies that they’re still able to do. So there is this meaningful difference between appropriate reactions to illness and clinically significant symptoms of mental health problems.

Eric: Yeah. That pervasive hopelessness, helplessness that we see. Des, your thoughts on this, and particularly too in the cancer population.

Des: Yeah, I think what was coming up for me as I was listening to Elissa describe this, we rely on the patient being able to recognize their own thoughts and feelings and communicate that to the palliative care provider or the oncologist. And one, most of us aren’t really trained to pay attention to how our thoughts sound or how our feelings feel all the time. So from a patient’s perspective, they might think, “Well, of course I feel sad. I’m dying.” But they might not think to themselves, this is something I should talk to my doctor about. Because often what we hear from patients, “I do a lot of pain management research,” but mood comes up in that a lot, is that, “Oh, I don’t want to talk to my doctor about this. I don’t want to distract them from them treating my cancer or from them treating my nausea. If I’m going to talk to a therapist, maybe I’ll tell them about how I’m feeling, but even then, why would I bring it up? What can they do to help me feel better? I’m dying anyway.”

So there’s this combination of it’s hard to build that insight or it’s maybe not as common as we as providers think it is. And then also this stoicism or fear of detracting the provider’s attention from their medical symptoms that they want their doctor to stay focused on too.

Alex: This is fascinating. I just want to note for our listeners who didn’t hear our prior podcast with Susan Block, who was one of the founders of palliative care. She said the major frontier issue that she’s concerned about that we need to do a better job with are the psychological issues in people living with serious illness. There has not been enough attention to it and is so incredibly important when you ask providers, like as you did Elissa in your survey of AHPM providers about how common this is, whether they feel like they have the right tools, where they have the right training opportunities. It’s a major deficit.

Eric: Is it a deficit? Because I read every national guideline around palliative care and each one says we should be identifying and managing psychological and psychiatric aspects of serious illness. That’s high quality palliative care, so are we living up to it?

Elissa: But it doesn’t to tell you how. So what’s amazing about these guidelines, so if you go to 12 different hospitals and ask them, “How are you managing psychiatric conditions and mental health concerns in the context of palliative care?” Hospital A will say, “Well, we have a social work team,” and hospital B will say, “We have a dedicated psychologist,” and hospital C will say, “Our geriatricians are trained in this,” and hospital D you have… And then you ask them what screening measures they use and some say, “We don’t screen, we do a clinical interview.” Some say, “Everyone gets a PHQ-9. While everyone says we should be doing this to the best science available, every hospital has a different interpretation of that. And to be frank, the science is not conclusive of what the best science available is. We haven’t had enough science in the mental health treatment of these folks to know what the best way to do this is.

Eric: Well, let’s parse that out a little bit. Let’s start off by asking what are palliative care clinicians doing? So you actually did a survey of AHPM clinicians?

Elissa: Yeah, that was led by Dan Shalev, but I’m an author on it, yes.

Eric: Yeah, I think senior author too, right? Just calling that out. So in that survey, if I’m remembering correctly, you asked questions like how comfortable do they feel managing these mental health issues? I think most felt like me. I’m fairly comfortable managing kind of non-complex depression, maybe a little less so anxiety, but when it comes to PTSD, substance use disorder, although I’m getting a little better at that, I’m less comfortable. Is that borne out in your research too?

Elissa: Yeah, and I do want to, comfort is subjective, right? I love this survey because it is mostly of physicians, which physicians are doing the lion’s share of the palliative care work here, but what you say you’re comfortable doing for depression care might not dovetail with what a psychologist or social worker would do in the context of depression care.

Eric: That’s a great point. I would be very uncomfortable doing CBT.

Elissa: Right? Can you do 12 sessions of CBT in format?

Eric: No way.

Elissa: And you shouldn’t, right? That’s not your job. That is not your job. That’s my job. So it’s okay. This idea of what we’re comfortable with is really important, but even the idea of does an SSRI work for existential concerns about end of life. I don’t know. No one does that research.

Eric: But I do want to highlight in your survey, one out of 10, only one out of 10 of teams had a psychiatrist or a psychologist, either full-time or part-time, even a little bit on their team.

Des: There’s just not enough. There’s just not enough providers to address these concerns. And even a lot of the times what we see is that even when the providers are there, only the patients with very severe symptoms get referred to those providers because of some of the issues we talked about before, like patients not wanting to talk about it or not wanting it to be the forefront of their clinical care experience, but also because providers are busy doing so many other things and making so many other referrals that it’s not at the forefront of their mind either.

Elissa: I want to push back on this a little bit too, if you don’t mind.

Eric: Go ahead.

Elissa: There is a mental health provider shortage, but I’ve also seen almost no postings for jobs in sector hospital. So in the VA, psychologist and a social worker and a chaplain and a doctor and a nurse are all mandated components of a palliative care team. A lot of times I see private sector hospitals saying, “We have mental health covered. We have a social worker.” And then you talk to that social worker and you say, “What’s your day to day?” And they say, “Well, I’m discharge planning. I’m having family meetings to talk about goals of…” They have so many competing demands that you ask, “Do you do any 30 to 45 minute counseling sessions on a regular basis?” And they say, “In what world would I have that time in that space?”

But in the VA, that’s all the psychologist is really doing. So yes, there’s a mental health provider shortage, but I also think that there’s a lack of willingness to invest in mental health resources at the hospital level, and that goes down to training too. The only place that I know of to get a palliative care postdoc in clinical work for psychologists is in six VA hospitals.

Eric: I also feel like my assessment, so should I do physical screening assessment for distress, psychological, social, spiritual screening, so it builds up and builds up all these needs and it’s never going to be as good as our social worker focusing on that area of expertise around psychological and social distress or physician focusing on symptom management. Although again, there’s a lot of overlap between the two and there are psychologists focusing on psychological distress. I don’t have the expertise that they do in really drilling down. We’ve had a podcast with chaplaincy. I can do some basic spiritual distress screening, but I am not a chaplain. And even the assessment to know who should be referred to the psychologist on our team is hard because it’s relying on my assessment.

Elissa: Yeah.

Des: Well, I think that’s where the designated screening tools or pros that are being, there’s a lot of efforts to integrate them more regularly in a structured manner to hopefully do some of that screening for the clinician. Distress screening, we hear about it all the time and the distress thermometer or some of the PROs that are now being integrated.

Eric: What’s a PRO?

Des: Sorry, patient reported outcome measure. So these different standardized measures that patients can complete either right before their appointment or during their appointment right before they see the doctor or something like this, and it’s kind of standardized. They’ve done research to figure out what cutoffs meet clinical criteria for this patient might benefit from speaking to a psychologist or social worker to do some of that work for the physicians or nurses who are trying to look at 18 different systems for what the patient’s going through.

Alex: I wonder if we could go back to Elissa, because as you just said, Des, who might benefit from this. What is the evidence that palliative care teams provide benefit for patients with serious illness who also have mental health issues?

Elissa: This is a loaded and tricky question, Alex, but I will do my best to field it. Because again, the idea that every palliative care team is created equal is incorrect. Right? At the VA, they try to mandate what a team looks like, but even still from VA to VA, it looks different whether it’s a 0.25 or 0.5 person in each role, and every hospital has a very different version of what a palliative care team is. That being said, we did do a paper to systematically look at the psychological outcomes of palliative care interventions. And this is hard to get into without going too deep on the methodology here, but essentially the results were a little inconclusive in terms of the benefit. But what I take that to mean is not, “Oh, throw out psych care. It’s unimportant. We’re not doing it right.”

What I take that to mean is I think from digging pretty deep into all of these studies, in almost all of them, psych outcomes were like attack on afterthought. So they were not the primary target of the palliative care intervention. In most of the studies, they didn’t really go into detail about what the intervention was or who was delivering it or what their training to deliver it was. And here’s the one that really was mind-blowing to me. In many, many, many of these studies, they excluded people with severe mental health distress, so certain mental health diagnoses were exclusion criteria from a palliative care study. So I can’t tell you exactly what’s going on.

Eric: So if you’re having significant psychological distress, we’re going to-

Elissa: Out of the study.

Eric: … Randomized control trial of a study trying to decrease distress.

Elissa: But this happens all the time, right? Because we’re scared of suicidal ideation because the IRBs bristle when you say you’re going to include people who are suicidal. Well, I think we need to include suicidal folks in palliative care studies. I think that that’s a really important population to look at, and people with severe mental illness, they are always excluded from palliative care studies, but folks with bipolar disorder get cancer and other serious illness conditions too. And we have no evidence base to know how these folks are faring at end of life because we kick them out of every study. This is the problem.

Eric: I love this study. You look close to 40 of, if we think of all the big palliative care studies, they’re included in this study. If we think of the smaller ones, they’re included in this study. Over like 6,000 patients, 1500 caregivers, huge. And drilling down on this meta analysis that, A, maybe our interventions don’t lead to reduced psychological distress, and B, maybe that’s because of how we’re designing this study or implementing palliative care.

Elissa: What I take it to mean, knowing the clinical landscape a little bit, I only know from the hospitals and systems I’ve worked at and my colleagues, but knowing the clinical landscape and knowing the research landscape, what it signals to me isn’t we can’t do anything for mental health in palliative care. What it signals to me is we got to invest in figuring out how to help people with mental health problems because we have not made that the target of our interventions. We have not invested heavily in figuring out how to best treat mental health. It’s always this afterthought. Like, “And also, we’ll see how their depression does.”

Eric: Oh, that’s interesting. I never thought about that too, because if it’s the target issue, so oftentimes in these studies we may be targeting either general distress, physical distress, like in the study looking at stem cell transplant patients in the hospital, really looking at physical distress symptoms. So it would be hard, I’d imagine, to actually find a signal in psychological distress if you’re not targeting psychological distress from the start. So it would be-

Elissa: Right. You’re not powered.

Eric: It’s a feeling effect. You can’t make people feel better from feeling better if those are the only people you include.

Elissa: There’s that. There’s also, we’re underpowered, right? If we’re not making it our primary outcome variable, then we’re not powering on finding that statistical difference. So there’s a lot of methodological things going on, which is a little wonky and probably a little boring to talk about. You can read the paper if you want to do a deep dive on methodologically why I think we found no effect in our analysis, but I think what’s maybe more interesting to focus on is thinking about, well, what are we doing clinically right now? The psychological sciences have come really far in the last 30 years. General psychosocial support is not enough mental health treatment to remit depression in folks with moderate to severe depression, for most people.

I’m not saying that it’s not great, and I think that that’s what a lot of palliative care folks are really trained on, is to be this supportive, empathetic person. But that is not the same thing as CBT for depression, CBT for pain, CBT for anxiety. That’s not the same as mindfulness based treatment for stress reduction. That’s not, we have these evidence-based interventions, which probably needs some amount of adaptation and tweaking for this population. We know they do. We’ve been doing some studies on them, but those interventions are not getting deployed and implemented in palliative care. Above and beyond, the two surveys that we’ve done of palliative care providers, we are not seeing these evidence-based approaches to mental health care.

Des: And I really love that you brought this up and this is one of your findings because I think that’s also missing in the education to palliative care providers. There’s a lot about communication and addressing and identifying emotions and how to be a supportive listener and all those things are amazing and good, but that is not the basis of psychological interventions. The basis of psychological interventions are around cognitive behavioral therapy type techniques or third wave interventions and these structured approaches that we know can work, but they have to be taught and implemented accurately or close to, and they’re different from these emotion focused techniques within a patient physician interaction.

Eric: Well, it’s interesting too because honestly, while I would love to learn how to do CBT or any of these things, I just don’t have the time. And even in our training for fellows, it’s a year long fellowship. There’s only so much we can do with a physician, which goes back to how important is it to do that training versus create teams that really mirror what our guidelines say that we should be doing?

Elissa: It’s teams, but it’s not just teams, it’s also training the physicians on the teams to know when to tag in their team members.

Des: And the reimbursement models to pay for it. Like she was saying, there aren’t jobs for these people because they’re not always reimbursed. The structure of reimbursement hasn’t necessarily supported that team-based structure in these end of life or palliative care systems.

Elissa: Totally. There’s a reason why the VA is ahead of us in terms of integrating behavioral healthcare. It’s because they don’t have to worry about the reimbursement models.

Eric: Well, I guess the other question too is what does it look like outside of the palliative care setting in the more general oncology cancer setting? Do we have any information on that, do you know?

Des: It’s not very different. So I did my dissertation on distress screening in oncology and led a few programs that have VA similar. So we have screening similar to what we talked about, those patient reported outcomes or those distress distress screening measures that patients can complete. And then the NCCN now has a similar guideline requiring comprehensive distress management for their accreditation in cancer centers. And so cancer centers are incentivized now to have social workers or psychologists or psychiatrists to meet patients’ needs. But they have a lot of the same barriers that we’ve talked about in palliative care. So I would say you see a bit more management in oncology just because I think there’s been more of a push to do so for a bit longer of time than just in palliative care. But the same issues exist.

Elissa: This is more from the clinical side. I haven’t done research in psycho-oncology, but I’ve worked clinically there and have a lot of colleagues. From what I gather, psycho-oncology is a pretty well established field, but in most of these settings, you have the oncologists who refer, and then you have the oncologists who don’t refer, and you also have crazy wait times and you end up having patients who meet with their therapist once every three or four weeks because that’s what the availability is in the outpatient clinic schedule. This is probably worse in big cities with high volume. But again, when we think about the psychological sciences, there is no therapy that I know of. Maybe there are some, but to my knowledge, most of these evidence-based therapies, specifically in psycho-oncology require a weekly cadence, not a once a month cadence. It’s really hard to build momentum and do behavior change and behavior modification if you’re only seeing your patient for 40 minutes, 50 minutes once a month. That is not a therapeutic dose of an intervention.

Eric: Well, actually maybe before we talk about what do we know works, I want to go, Des, to you. One of your articles also I thought was fascinating because in the cancer population, if you look at cancer pain, I think a lot of us think cancer pain, you treat it with neuropathic drugs, medications, opioids. But if you look in the ED for patients with cancer and pain, biopsychosocial factors played a particularly important part in bad pain. Is that right?

Des: Yeah, yeah. So I’m going to just give a bit of background that in the chronic pain literature, we now know that these different biological, psychological, social factors play a part in chronic pain. And when we transfer that to the cancer world, there’s always this question of like, “Well, we know the underlying etiology of why the pain is there. So do psychological factors matter as much?”

Eric: Yeah, they have this big tumor sitting on their spine. That is the source of their pain.

Des: Of course. And there’s some pushback in the oncology field about why psychological factors should be addressed. And I think if we just take a moment to step back and look at our different psychophysiology studies understanding pain, what we’ve actually learned is that the way the brain perceives pain, all pain, regardless of what’s happening, stress and psychological processes are naturally integrated in that for all of us, regardless of if it’s fibromyalgia, osteoarthritis, or cancer. And so there’s this movement now to try and understand, okay, well how much of a role do psychological factors play in the cancer experience? And therefore, what does that mean for how we can help treat the pain experience during cancer? So I was really interested in teasing apart this acute on chronic pain experience because what I was hearing from patients was, “I have this pain and I’m really scared that it means my cancer is getting worse,” or, “I’m really scared that it means the chemotherapy is not working.”

And as a psychologist, what I know about is pain catastrophizing, which is this concept of these negative recurrent thoughts and perceptions about a symptom, and in this case it’s pain. And so we have these thoughts that kind of repeat to ourselves of when is this going to get better or this must mean something is really wrong and it kind of activates your stress response and nervous system, which can make pain worse. And so we did this study where we had a bunch of patients who came to the ED at Brigham and Women’s Hospital, which is Dana-Farber’s primary ED, and had them fill out those surveys like I was talking about, those patient reported outcomes when they were coming for cancer pain. And basically what we identified after following them in the ed and then if they were hospitalized, we looked at their pain scores and how many opioids they got.

And what we identified is that their psychological symptoms when they came to the hospital, particularly their pain catastrophizing, were predictive of having worse pain while in the hospital and receiving higher opioids while they were in the hospital. So we are not with patients one-on-one in the study to be able to see in the minutia what’s exactly happening. But we can presume that patients who are worried about their pain are probably more vocal and anxious, and so the doctors are going to feel like their pain’s probably worse, so let me treat it more aggressively than others. And it’s not to say they’re getting opioids for anxiety, that they shouldn’t be getting them. No, of course there’s a time and a place and they need the opioid treatment and we need to be treating these cognitions, worries, concerns, distress, anxiety that is happening in conjunction with their pain.

Eric: I guess that leads to, what do we know? I have an idea about the evidence for opioids and pain, gabapentin or the lack of efficacy sometimes in there. What do we know about the evidence for behavioral pain management? Cancer, palliative care populations?

Des: For the non-cancer pain population, so that can also include palliative care, so like HIV related neuropathy or end stage advanced rheumatologic disorders. There’s really strong evidence that pain focused cognitive behavioral therapy. So these 12 week sessions, hour long sessions can lead to significant improvements in how much pain interferes with patient’s quality of life. So their quality of life improves. For some people, their pain improves, and we see that. When I say really strong evidence, it’s small to moderate effect sizes, but at times equally as effective as medications. If combined with medications, we see the best outcomes, usually.

Now, a lot of people have been doing work at shortening these interventions, so they’re not 12 sessions, but maybe one session or three sessions and we’re seeing equal effectiveness. Or delivering them through telehealth, and we can talk about that. But so modifying them for cancer populations, like Elissa mentioned, people are doing that. They’re just in smaller studies. That’s a lot of what my research focuses on, and we seem to be seeing good effects from that when combined with medications, it helps patients cope better with their pain, their quality of life is better, their suffering related to their pain is better.

Eric: I love this.

Alex: I saw Des present this work during the NPC, National Palliative Care Research Center Foley retreat this past year in Jackson Hole. Fantastic place. And she started off by saying, “Show of hands, how many of you believe there’s a psychological component to pain?” Was it something like that? Is that the right question?

Des: Yeah.

Alex: And then everybody raised their hands, right? Like all 100 hands go up. And then she said, “How many of you routinely refer your patients with cancer pain to a psychologist?” And everybody’s hand went down because there are just so few psychologists. I love the way that you set that up. And also just as you’ve just discussed, there is evidence behind having psychologists administer these therapies. I wonder, I know that we’re getting, we have 13 minutes left. I want to make sure that we get to talking about your app. I don’t know if there was anything else that, Eric, you wanted to discuss on the web?

Eric: No, that was the last thing. Scalable solutions.

Alex: So then what we do, because nobody had their hand raised, because in the world we want to live in, there’s funding for, there’s a financial model, and psychologists are integrated and present in palliative care teams, inpatient and outpatient across the country. Unfortunately, we have to live in the world we live in, not the world as it should be. And so, one of the amazing things I think about your work, Des, is the way that you’ve tried to create a model that works in the world in which we live. You want to talk about it?

Eric: Yeah, I’m trying to do so. Sure, yeah. So I just want to start out by saying I think one of the reasons a lot of the referrals also don’t happen, it’s not just lack of access to care. It’s like the stigma of telling a patient, “Your pain is in your head, go see a psychologist.” And it’s an unfortunate reality. But when you look at the science behind how pain works, for all of us, the psychological components are just a natural part of how our brain perceives pain. And I think that can help reduce the stigma for patients if we can educate them on that early on. Like, “Yes, you’re feeling pain. Pain is very stressful, and being stressed can make your pain worse. And having a cancer diagnosis and treatment is freaking stressful. So it’s no surprise that stress is going to be a part of your cancer pain experience right now, and we want to help you find ways to cope with that.”

So that’s first and foremost to help with the referral, but we don’t have enough providers, and that’s not even the only thing. It’s like, how many cancer patients do we know have an hour a week, including driving time, to go sit with a provider? Or let’s say it’s even on telehealth and video, feel good enough to sit and interact with a therapist for 60 minutes once a week? Not many. So a lot of what I’m looking at is how can we shorten these interventions to really get at the most critical components to teach patients. So the theoretical background of some is better than none, and what are the most potent some parts that we want to teach them? And then can we do that in a way that’s part of their natural daily life so it doesn’t feel like this strenuous, energy sucking thing, like driving to the hospital and meeting with a therapist.

And so I’ve been working on developing mobile health apps for cancer pain with my mentors at Dana-Farber, oncologist, Andrea Enzinger, James Tulsky, I know you guys have probably spoken with him, Rob Edwards, who’s a pain psychologist there, and trying to make pain CBT bite-sized so that it only takes three to five minutes a day of a consistent interaction through a mobile phone. So something that most patients are comfortable with. Again, older adults or not all people are tech-savvy. You’d be surprised though, most of them are willing to learn if they’re interested. But how can we make this less burdensome, more scalable? Most of us have a smartphone now, and the biggest thing is I think it really reduces the stigma of learning about how stress plays a role in your cancer pain experience or how different things you can do to manage your cancer pain are actually pretty accessible and can help you to cope with it better.

You don’t have to rely on your physician. And that it can integrate with your opioids or with your other medications. It doesn’t have to be this or that. It can be both of them together. Long-winded answer, sorry. But very passionate about the topic, clearly.

Alex: And you had this fascinating article. Are palliative care patients ready for gamification? I don’t remember the exact title. Can you talk about ways of integrating, making this into a game, and is that part of the app? And maybe you could just sort of talk through our listeners verbally describing what they might see.

Des: Yeah, sure. So we’re always thinking about how do you make things more engaging because so much of the symptom management experience is stressful in and of itself, reading articles and things like this to get the knowledge that you need. And so we’re trying to create these behavioral games with characters or, again, these bite-sized activities to teach patients about stress management or a skill called cognitive restructuring, which is picking between an adaptive or a not so helpful thought so they can learn to build insight around their thinking and what kinds of thinking can be more helpful versus not as helpful. And then depicting that in an app that they can play for three to five minutes. So we’ve developed five or six levels of a game with software developers. We’ve tested it now in about probably 40 or 50 patients with cancer, mostly advanced cancer and pain.

And the two biggest takeaways are, one, “It’s distracting, which I like,” is what they say. “This helps me if I’m sitting in the doctor’s office waiting for them, I’m not sitting around thinking and worrying about what’s about to happen. This is a helpful distraction. It’s easy to look at, it’s fun, it’s cute.” And two, “It’s helping me to learn a skill that I didn’t even know I needed. And it’s easier to learn it this way than someone trying to describe it to me where I get overwhelmed and I can’t listen to all the content.” So actually we’re seeing that it’s kind of a win-win in the sense that with patients undergoing cancer, they’re sitting a lot of the time getting infusions or waiting for their doctor. This is a nice way to pass the time. And people like playing games because we learn in different ways than just talking or listening. So yeah, trying to build those kinds of avenues.

Alex: Yeah, that’s great. And our listeners, I’m sure they’ll be saying, “Wait, I want this app. Where do I get the app? It’s not in the download store. What’s it called?” I think we said at the beginning, STAMP CBT. My sense is this is still in the early phases. It’s not yet out there for people, but you hope to, someday?

Des: Yeah, absolutely. So we’ve finished our first pilot and the results look pretty promising. It was small, it was about 20 patients. It was recently accepted for publication in Supportive Care in Cancer. Hopefully we’ll be able to link that out. We’re finishing a second pilot. We made some changes to the app. We’re doing another pilot, and we’re going to do that a few times. You want to just make sure to iterate all the content to be as effective as it can be and as useful for patients. And then the goal is to hopefully license it out to an app company and be able to make it as widely accessible as possible in a safe way for patients and providers. Because in the app, we do integrate with opioid education and support to really reinforce this combination of therapy. So yeah, that’s the goal. We’ll see. I have a K Award to help support that now and hopefully we can make something of it.

Alex: Elissa?

Elissa: Alex, I don’t want to leave your listeners high and dry without digital resources. This is also near and dear to my heart. It’s what most of my research is on. So I just want to plug the mHealth suite of apps from the Veterans Affairs National Center for PTSD. They have a ton, not a ton, maybe six or seven, really high quality mental health apps that are available for free to everyone. My research focuses on mindfulness coach, which is an mHealth version of mindfulness therapy. My research has shown that it’s been effective at reducing anxiety and depression in a couple of different populations. I think they have a pain coach.

Des: They do, but it’s not fully developed or widely accessible yet, but they’re working on it.

Eric: Is this in the app store or do you go to a website? I guess we’ll include the link to it in our…

Elissa: I’ll include the link, but they have a bunch of them. They have a really good insomnia coach app that’s really user-friendly, one that I actually use myself. They have a brief to relax. They have a couple of different specific apps for specific mental health conditions that are not specific to veterans or to PTSD. And you can prescribe these to people. I think it does. In all of my research, I give people a little orientation on how to use the app. You technically don’t have to. I just think it helps with engagement and building knowledge. I give a 15 minute, “Here’s the app, here’s what you can do.” And they have a gamification approach too, like mindfulness coach. The more you use it, the more your little cute tree grows. And research, the patients, they love watching their tree bloom.

Des: Aw.

Elissa: Yeah, they’re good. They’re good.

Eric: We’ll have links to all of this. This is a great way to integrate more behavioral health into our palliative podcasts or into our palliative care practices and our podcasts, I guess. But before we end, as Alex sets up, Des, Elissa, if you had a magic wand, one thing that you can change around this issue around behavioral health integration and cancer care, palliative care, geriatrics, what would that be?

Elissa: You want to go first? I’m going to put you on the spot.

Des: Yeah, I’m happy to. I think the number one thing I would change comes back to that addressing stigma around just psychological issues when dealing with chronic disease. And I wish that more providers could find the right language that fits for them to normalize and validate that we all likely would feel stressed with a chronic disease diagnosis to some level, and that it’s normal to feel this way or to feel depressed or anxious. Sorry. And if that’s the case, it’s okay to get help and find a referral or to get on an app because I do think the strength of doctors and providers and their voice in patients’ eyes is so strong, and I think it could really help make a big difference.

Eric: Great. Thank you, Des. Elissa?

Elissa: I mean, how powerful is my magic wand? Because I want to completely change the reimbursement structure.

Eric: It is a magic wand, but it only works once. So you got to choose one thing.

Elissa: I mean, I think it would be somehow to get a dedicated mental health provider on every palliative care team. I know we have social workers on so many teams, but their jobs are not dedicated to mental health care. They have so many competing demands. And so if there was just one person whose only job was figuring out how to support mental health for this population, that would be my wish.

Eric: Wonderful. Alex, you want to end us off?

Alex: (Singing).

Eric: Des, Elissa, thank you for joining us on this GeriPal Podcast.

Elissa: Thanks for having us. This was great.

Des: Thank you so much. It was awesome.

Eric: And thanks to all of our listeners for your continued support. And don’t forget, you can claim CME Credit now for this GeriPal Podcast.

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