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Headshot of Jessie Merlin

I recently had the fortune to hear Dr. Kathy Foley talk about palliative care and the opioid epidemic.

First, let me say that Dr. Foley is a GIANT in the field of palliative care. She has probably done more to improve access to opioids globally for people with serious illness than anyone else in the world. She’s so big the National Palliative Care Research Center retreat (where I saw her speak) is named the Foley retreat.

Second, it was remarkably courageous of her to speak on this particular issue, as Dr. Foley was unfairly vilified in the popular press for initiating the opioid epidemic with a small paper on 38 patients she published with Russ Portenoy. (Here’s a link to a more thoughtful treatment of the story Netflix doesn’t cover, and the pernicious role of big pharma, particularly Purdue, the makers of Oxycontin).

Third, let me say that if you ever have the chance to see Kathy Foley speak — go. Just go. She’s a brilliant speaker. She is sharp as nails and cuts to the hart of the issue.

This talk was no exception. Toward the end of her talk, Dr. Foley argued that increasing restrictions on access to opioids are harming care for patients with serious illness: States where you can’t prescribe more than 100mg morphine equivalents, hospitals where emergency physicians are penalized for prescribing opioids, etc. These are major issues.

Afterward, I asked Dr. Foley, setting aside the ridiculousness of she and Russ Portenoy being personally responsible, to what extent are palliative care and hospice responsible? It’s important that we consider our role in potentially contributing to the epidemic. Understanding how we may have contributed — unintentionally, to be sure — will help us take responsibility and make changes to address these issues.

To what extent is diversion of the medications we prescribe an issue? To what extent has spreading the message about pain being the fifth vital sign contributed? That opioids are the answer? Educating about the beneficial effects of opioids and correcting misconceptions are all to the good. But did we focus so intently on this mission that we turned a blind eye to the potential harms and risks of opioid treatment? Could we have advocated harder for non-pharmacologic interventions, such as mindfulness training, massage, cognitive behavioral therapy, and acupuncture? Geriatrics may have played a role as well. Our 2009 American Geriatrics Society guidelines for management of chronic pain in older adults were accompanied by a JAMA editorialthat could be summarized, “avoid NSAIDS, consider opioids.”

In this week’s GeriPal podcast, we talk with Jessie Merlin, Palliative Care Faculty at the University of Pittsburgh, who is addressing another important aspect of this issue: the role of palliative care in chronic pain.

We discuss issues such as:

  • Do outpatient palliative care providers see patients with chronic pain currently? (please take this survey to help Jessie figure this out!)
  • Should palliative care fellowship training include management of chronic pain?
  • Is there really a distinction between “cancer pain” and “non-cancer pain?”
  • To what extent is or should prognosis be a factor in determining treatment of pain?
  • Everybody Hurts by REM (and a hack rendition)


  • Link to the survey on palliative care and management of chronic pain (for MDs, DOs, NPs, and PAs who practice outpatient palliative care all or part time)
  • Article on outpatient palliative care at academic medical centers by Mike Rabow
  • Article on the landscape of outpatient palliative care (who is that first author?)
  • A food blog about Birmingham, AL, and story about Jessie and her husband who founded it
  • Eric Widera’s great blog on the meaningless distinction between cancer and non-cancer pain (see comments too, including my favorite from Drew Roseille: ) I appreciate Joan Lynn’s comments that prognosis matters. It really, really does, and I’ve found it most helpful over the years to conceptualize this as a ‘goals of opioid therapy’ consideration. Eg, patient who has progressive cancer which is worsening, expected to live months, etc – our goal is appropriately focused on alleviation of suffering (globally, including physical pain). True also for dying patients with any diagnosis when the goals are alleviation of suffering. But for non-terminally ill patients, and for ‘terminally ill’ patients who are likely to live for years, the goals of opioid therapy, or of pain therapy, are more complicated, and promoting long-term socially relevant functioning (whatever that means for a patient), alongside safety, are key/top priorities with alleviating suffering less so. It would be nice if we could do all 3, but we often can’t, and certainly can’t do it solely with opioids/drugs.)


by: Alex Smith, @AlexSmithMD

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

Alex: This is Alex Smith.

Eric: Alex, who is our guest today?

Alex: Today we have a very special guest from the land of Pittsburgh, this is Jesse Merlin who is a faculty member in the palliative medicine division and general medicine at University of Pittsburgh. She’s very interested in chronic pain, opioids, and palliative care.

Eric: Ooh, hot topic.

Alex: Hot topic.

Eric: Welcome Jesse.

Jesse: Hi, thanks for having me.

Alex: We start off with all these podcasts with a song request. Do you got a song for us?

Jesse: I do. I do. Please don’t roll your eyes too much at the title of the song, but “Everybody Hurts” by REM.

Alex: Great choice.

Eric: Ah, great song.

Alex: First person to request REM.

Alex sings “Everybody Hurts” by REM.

Eric: We’ll hold this sing-a-long until after the podcast.

Jesse: Yeah, you definitely want to do that with me. Sounds good.

Eric: So, opioids, pain, and palliative care. Maybe before we dive into it, how did you get interested in this subject?

Jesse: I’m trained in both infectious diseases and palliative care. My real passion is palliative care needs in patients with HIV. So when I … my first faculty position was at University of Alabama at Birmingham where I was for six years, just until this September. When I came to UAB, I took over what in name was a palliative care clinic for patients with HIV. One of the few in the US, so it was a very special job that I took really seriously, and it turned out that all of the patients pretty much had chronic pain.

I realized that even though I went to an excellent palliative care fellowship and was very well trained in general medicine, infectious diseases, and palliative care that I didn’t know how to take care of patients with chronic pain. It wasn’t part of my skill set as a palliative care doc, and so I really had to learn how to do that, and I had to decide whether it was something I liked or not, well enough to really delve into it.

I decided I had to run screaming towards the fire or away from the fire. I ran screaming towards the fire, if that makes sense. It’s a thorny … it’s a challenging thing to do, but it’s so gratifying. I’ve gotten very, very interested in chronic pain in primary care settings, and also chronic pain in palliative care settings.

Alex: It is a complex, thorny issue as you’d note. You mentioned that you didn’t have a lot of training in management of chronic pain …

Jesse: That’s right.

Alex: … during your palliative medicine fellowship. Do we know nationally whether palliative care training programs train people in management of chronic pain?

Jesse: It’s a really good question. I’m not a fellowship director so there, I’m sure, there are other people out there who could explain this better than I could. My understanding as a faculty member in a palliative care fellowship at UAB for six years is that ACGME requirements recently have changed to include some kind of addiction experience, but the definition of what that is, is varied. That’s not necessarily chronic pain, I mean, chronic pain addiction can sometimes go together.

Like I said, it doesn’t mean that there has to be a robust clinical experience in that area. It could be sort of defined by the fellowship. There really isn’t a robust requirement for training. Actually, a long time ago, before I was at Pitt actually, Bob Arnold, Julie Childers, and I … Bob Arnold and Julie Childers are at Pitt … they and I wrote an opinion piece about this. About the fact that we don’t really get training in this. If you look at the core competencies of pain fellowships, that might help inform what we outta be doing in palliative care fellowships. A lot of the times we’re treating the same types of things.

Alex: That’s interesting. It does seem to be overlap, but the amount of overlap varies. Do we have information about what proportion of palliative care programs clinically are seeing patients with chronic pain?

Jesse: Yeah, so that’s something we don’t really have recent data on. In about 2011, Mike Rabow … who you guys, I’m sure, know from UCSF … wrote a brief article in Archives of Internal Medicine where he surveyed CAPC ambulatory palliative care programs and asked them what types of things they were seeing. If I recall correctly, about 10% reported accepting patients with chronic pain, but also, he must’ve had some pretext comment thing that people could do when they responded to this survey. One of the pretext comments that they noted in the study was that chronic pain was challenging for these programs, but that’s been some years.

A lot has changed in the world of chronic pain in those years. I mean, patients … there aren’t very many chronic pain docs, and patients are having an increasingly difficult time finding chronic pain docs for reasons we can get into, and so I would assume that that number has … at least the number patients knocking on our doors has gone up, whether we’re accepting them or not I think is a different thing.

Alex: Yeah, and especially as we move further afield upstream in palliative care, we’re dealing with cancer patients who have chances of cure and remission, these acute pain episodes are turning into chronic pain episodes. I know a lot of people are bringing up this cancer pain versus non cancer pain, which always feels like a false category for me.

Jesse: Yes, that’s right.

Alex: How do you think about all that?

Jesse: Yeah, it is a false dichotomy in a way, right? Patients with cancer can have quote unquote non cancer pain, right? You can have a patient who enters their diagnosis of cancer in their cancer treatment with chronic lower back pain or fibromyalgia or some type of chronic pain condition, then you can have patients who have acute pain related to their cancer, so maybe somebody who has post surgical pain related to a resection or what have you that is acute and goes away. Sometimes that acute pain becomes chronic pain. You can have pain related to treatment like peripheral neuropathy related to cancer treatment that when it develops is expected to be chronic. These lines are really, really blurry.

I think to have these artificial categories overly simplifies things. A lot of studies and guidelines exclude patients with cancer. That means we don’t really know as much about what we ought to be doing for these patients, especially once their cancer has resolved and a lot of them stay in palliative care, right, I mean, what happens to a patient that has peripheral nephropathy related to their cancer? Once their cancer has been treated and they’re in remission or they’re cured, do they then go to their oncologist for pain treatment? No. Do they go to their primary for pain treatment? Maybe. But their palliative care doctor’s already been managing their pain, so that seems like a likely place for them to go. So that now puts palliative care docs squarely in the realm of managing chronic pain.

Alex: Now we haven’t really addressed the elephant in the room.

Eric: There’s an elephant?

Alex: We should have addressed the elephant …

Jesse: An elephant? …

Alex: … and touched the elephant.

Eric: Sorry the video’s not on, you can’t see the elephant.

Jesse: I know!

Alex: The elephant, the opioid crisis …

Eric: I thought it was an epidemic?

Alex: … epidemic, crisis, the epidemic of opioid, whatever it is; that elephant.

Jesse: That’s right, that’s right.

Alex: What is palliative care relationship to that opioid crisis, epidemic … what do you think?

Jesse: Well, so now we’re going to get a little bit philosophical, and I also I have to say, I finished my fellowship in 2011, so I like to think I’m relatively young, so I should … I’m disclosing that because I don’t remember, as a medical professional, the 80’s and 90’s, but that all having been said, based on my understanding of the 80’s and 90’s, palliative care is a discipline thought very hard to move opioids from, you know, a patient’s last dying breath, to a place that’s much more upstream, right? So, however, based on some early studies with extremely small sample sizes, where palliative care researchers took patients who had quote, unquote non cancer pain and gave them opioids, and said look they don’t develop addiction. That in combination with a lot of other factors, certainly wasn’t just palliative care physicians, but pain societies, drug companies, pain is the fifth vital sign, pain is an emergency … other societal factors, all of these things contributed to the opioid … to the beginnings of the opioid epidemic.

But I also keep in mind that we were champions of the importance of not relegating opioids to people’s last dying breaths, and so I remember when I came out of fellowship and people were just starting to really understand the relationship between opioid dose and overdose, and things like that.

I think it was an especially hard time for palliative care providers because people who have been in this since the 80’s and 90’s remember when the pendulum was all the way back at not giving opioids to anybody, and there was this really serious, and well grounded fear, that the pendulum was going to swing way too far back in the other direction. You know, like if we limiting people’s opioids, that’s going to affect our patients with cancer, and our patients who are dying, and so I think this was an especially troubling thing for palliative care providers who may have, in some ways, been prescribing a lot of opioids and helped to propagate some of the early misconceptions by accident, it was nobody’s fault, nobody really understood this.

So I think it’s, like I said, it’s getting a little bit philosophical, but my point is that I think this is an especially hard thing for palliative care docs, because of this historical perspective. Does that make sense, how I described that?

Alex: Oh yeah. I completely agree with your sentiments at, you know, palliative care started off by trying to improve access, and improve treatment of pain, and that unintentionally we may bear some small piece of responsibility.

Jesse: Right, right.

Alex: That it’s far from the whole picture, but that we may unintentionally have contributed to the opioid epidemic in these various ways that you were suggesting. Palliative care is moving further and further upstream, you know, treatment of pain with opioids, etc. However, I guess the question is, what do we do about it? Do you think there’s something … do we as a field in palliative … hospice and palliative medicine … given that we might bear some small piece of responsibility, is there something we ought to be doing?

Eric, you want to add to that?

Eric: Yeah, let me just add that the patients that we see now are very different than the patients we saw twenty years ago.

Alex: Mm-hmm (affirmative).

Jesse: Totally.

Eric: That we are moving farther upstream, that we do have to think about this. You know the patients that we were seeing in the hospital that were dying in 2 days, those aren’t the patients that were overly concerned about addiction, if they have a prognosis of a couple days or weeks. So I think it really is coming … I’m not sure how much responsibility we’ve had in the past, I do feel like we have a strong responsibility now, because we are moving into a realm where we are dealing more with people who are getting curative therapy, who have a prognosis of not just days, weeks, or even months but months, years, decades, or longer.

Just thinking, we have a randomized controlled trial now of stem cell transplant places who are getting curative therapy, that showed palliative care was actually helpful in individuals getting curative therapy. So I think this is a huge responsibility that we have now.

So going to Alex’s question, what is that … what should we be doing?

Alex: Right.

Jesse: Yeah, absolutely, well I want to make the point … I want to answer the question, but just to kind of back up a second to make the point that … the reason for thinking about palliative care’s responsibility, if any, all physicians that practiced during that time have, you know, contributed to this in some way, basically, maybe that’s an overstatement, but you know what I mean.

If you were practicing during that time, chances are you bought into the prevailing belief, which was that opioids were not that harmful, but the only reason I give that historical perspective, is I just … I just want to make the point … it’s not just to point fingers and say, oh how terrible this was, because it wasn’t. People didn’t really know what was going on. It’s more to just give that historical perspective that people in the field, who are still practicing now, may have had those experiences in the past and that may color their willingness to engage in a conversation now, because it doesn’t feel good, to be a part of this super swingy pendulum, but that’s just been my observation.

But anyway, then the question is being what responsibility does hospice and palliative care as a field have now, and I would say that all physicians have a responsibility now to be mindful of opioid prescribing and especially specialties that do a lot of opioid prescribing, relatively speaking, and have an opportunity to intervene with patients in different ways and I think our specialty is uniquely in that position. There’s certainly other specialties that are too, I mean, primary care is one that is very important, because patients with pain often first present to primary care and oncologists as well, and other pain specialists.

I think our field, it’s important, and it’s also been … we treat so many patients with cancer, who have survived their cancer so to speak, and I think that … the role of long term opioid therapy in that population, I think is becoming increasing recognized. The importance of looking at that closely.

Alex: So what do you think we should actually do differently with opioids, let’s say, in our clinics, or in our services. Do you have a sense of what the best practice is around this?

Jesse: Yeah so, I hesitate to give what seems like an overly straightforward or simplified answer to that, because I think, from a research prospective, we don’t know, right? I mean it’s such a complicated question because we see so many different types of patients, right? I think Alex was saying earlier, sure I mean the patient … a lot of has to do with prognosis and a patient with an extremely short prognosis, you know, opioids are perfectly reasonable in those cases. So I think the way I like to think about it though, in general, if I was going to try to over simplify this, is to say, that we really should get in the practice of thinking about both the benefits and the potential harms of opioids, where what we understand of the potential harms of opioids, is just drawn not just form our experiences with patients at the end of life, or from the palliative care literature, but is drawn from the broader pain addiction primary care literature.

And so that might mean, that in some patients who we are seeing, they really are much more, like, a patient with quote unquote chronic nonmalignant pain, even if they have cancer in their history somewhere. Whether they have a cancer that … where people survive for long periods of time with aesthetic breast cancer, and they can live for long periods of time, or whether they have cancer that’s been treated and they’re in remission and they’re no longer receiving active treatment, or they’ve achieved cure.

Alex: And the other role, the other group of patients there, the patients with chronic … older adults, in particular, who have arthritis pain and are nearing the end of their life, maybe they have multiple chronic conditions, maybe dementia … but their pain hasn’t gone away, and how do we treat their pain in those circumstances? Those people often live with pain for years and years and have uncertain prognoses and trajectories.

Jesse: Absolutely and even … I would broaden that and even say, not just older adults, but chronic pain occurs, if you look at some of the more recent studies, which I think are a little more accurate, probably in around 10-15% of the general population. That’s really common. So anybody coming in to a palliative care setting, you would expect 10-15% of them are going to have some kind of preexisting chronic pain, most common type of chronic pain in the general population is chronic low back pain, but like you’re saying, it could be arthritis pain, like joint arthritis pain, or it could be any chronic multi site pain, fibromyalgia, whatever it is …

Alex: So, what should the palliative care provider … what’s their role in those chronic pain conditions? Are we a pain clinic, where we need to have pain psychologists and physical therapists, are we a palliative care clinic that does chronic pain? Are we a palliative care clinic that moves chronic pain to these specialty pain clinics who are actually better staffed towards chronic pain, or do we just give it to the primary care provider whose most understaffed of all?

Jesse: Right. Well, I think there are multiple facets to that question, I mean one is … in our patients with cancer who are undergoing active treatment and have an active malignancy, but they may have a very long life expectancy, we can look forward and say okay there’s a good chance that they’re going to have a long life expectancy; what is the role of opioids in those patients? So we don’t know, what happens … we don’t know the risks, it’s not been … there’s no research to my knowledge that answers the question, what is the risk of prescribing opioids to somebody that now has cancer but is likely to survive it, or has a reasonable chance of surviving it.

So that’s one piece of it.

So ought we to be thinking about those risks, and weighing those risks with the current benefits of opioids and also thinking about multidisciplinary treatment because we know that in quote, unquote, nonmalignant pain, the, for example, mood and pain are closely related, so you can have somebody who has chronic low back pain and if they also have depression, and their depression is not well treated, their back pain will do poorly and so if you treat their depression, their back pain often gets better? So …

Alex: Mm-hmm (affirmative).

Jesse: … in self it would stand to reason that, you know, if a patient who has a malignancy and they also have depression, if you treat their depression, whatever you’re doing to treat their pain, whether it’s opioids or something else, it’s going to be better. So, should we be thinking about other things to … and of course, we, by nature, our profession is multidisciplinary, right? We are really well set up in some ways to do this, a lot of palliative care practices, whether they’re inpatient or out patient, typically involve multiple members of an interdisciplinary team, right?

But do we want to think about engaging those people specifically to help with pain treatment, and engaging different modalities that help with pain treatment besides …

Alex: Besides opioids.

Jesse: Opioids and agivets, it’s not to say people don’t use these things, right? I mean, hopefully we’re all doing things besides just opioids to treat or paints with cancer, but do we want to be more mindful of it and think about it as something that might be able to, you know, reduce the dose we have to get up to.

Alex: Also, strikes me here that we have a role to play in terms of advocacy for other treatments that may be effective, that are nonpharmacologic, like cognitive behavioral therapy, like mindfulness space stress reduction, like massage, like acupuncture, like Tai chi, like yoga … that are not routinely covered because in our current system, there’s no financial model for reimbursement for these professions, there’s no capitalist incentive like there is for some gigantic pharmaceutical company to make medications that they … that huge segments of the population become addicted to and then their profits go crazy.

Jesse: Right, right.

There’s a huge, huge conversation going on right now in the general chronic pain world about this. The national pain strategy is really emphasizing the importance in incorporating nonpharmacologic approaches to chronic pain, but until our payment models catch up, there’s really a disincentive to do it unproblematic basis, which is how it has to be done, it can’t just be like, oh you need cognitive behavior therapy let me see if I can scrounge up a person who can do it, it’s got to be … you know, the ideas … this type of thing is much better accomplished when it’s on an interdisciplinary team, where patients are being evaluated by providers who are actually talking to each other, formulating plans of care together.

So I think that’s one piece of it, is what to do with the patients who are in our care who have cancer, but I think the other part of your question is are we a chronic pain clinic? You know, do we pull sale as a profession except … should we be accepting patients who have anything from, what some people may call chronic cancer pain, so pain from [inaudible 00:24:20] cancer, but they don’t have an active malignancy right now, or even more upstream, should we be accepting any patient … I mean we treat suffering, so should we be accepting patients with chronic low back pain, and no life limiting illness, in to our practice? I think that’s obviously a very extreme end of the spectrum, but you know, the lines are really blurry.

What about a patient with … who has survived cancer, but also has low back pain? You know, it’s not black or white, and my take on this, and I’m curious to hear your takes on this too … I hope it’s okay that if I get to ask you some questions too. I hope this goes both ways.

You know, but my personal take on this is that every palliative care program needs to make this decision for itself. Nobody can … on the one hand, on a national level we can start having conversations about whether, as a profession, want to take this on and I think that’s an important conversation to have; what is our role in providing chronic pain care and I’m sure people have strong opinions in both directions about what we ought to be doing, but I think thinking about the individual palliative care provider, or individual palliative care programs … I know people who are in very well resourced programs, who can do lots of different things, they see patients with lots of different diagnosis, and I know people who are in programs where the only accept patients with active cancer because that’s their core competency, that’s what they feel they can do best, and they only have a limited amount of resources, and I completely respect that.

We can’t be all things to everybody.

Alex: Yeah and I would actually agree. I think back to the cases that I feel worst … I think the cases that I may not have actually done the patient much benefit, are the cases where I tried to manage something where I did not have the resources to deal with it. For instance …

Jesse: That’s right.

Alex: Chronic pain patients that I see in the hospital, who are there for a couple days and need to be followed, really for their pain is an outpatient. You know, time training those opioids and those patients, and then sending them out, while yay the patient loves me, I’ve probably actually done them a bigger disservice …

Jesse: Correct, yeah.

Alex: … then if I didn’t actually see them in the hospital. The thing about resources, do I have the resources to care for individuals with chronic pain? Whether it be from chronic cancer pain, or fibromyalgia, do I have a pain psychologist? I just … having been in a pain clinic and seeing what they do, I’m just always impressed. I take home so much from them, and we’re not resourced for that. We don’t have a psychologist on our outpatient service.

Jesse: Right.

Alex: And if we did, maybe we’d make different decisions of who we can care for.

Jesse: Right, right. I think … I mean … I really appreciate your comment in particular, I appreciate your willingness to sort of say, you know, I think sometimes we can do these patients more harm than good, specifically because this is not … I’m sort of using a little liberty here, but I think this is kind of what you were saying … because we’re not trained, we don’t … our skillset is for a different population of patients, and we don’t have the resources. I think that’s, you know, it’s like you got to know what you know, and you got to know what you don’t know, you got to know what you have, and you got to know what you don’t have. I think that’s a wise person that does that. That having been said, there’s a tremendous needs to care for these patients, and I think we as a profession, forgetting about our specialty palette of care, and talking bigger, we as a profession, need to really come to terms with the fact that we are really not providing comprehensive services for these types of patients.

And it’s the same with addiction treatment, in a lot of places too, but really for patients you know, like it’s the same with addiction treatment in the sense that it can be difficult to have multidisciplinary programs that don’t pay well, but I mean it’s really hard.

Alex: Yeah so, do you have any practical tips for our listeners on how to deal with this in like your own practice and your own clinics, as far as things that you make sure you cover with every patient when you’re prescribing opioids?

Jesse: Yeah, so I mean, it’s certainly depends upon the patient, in particular, the patient’s prognosis. It reminds me some of Rebecca Sudore and others work on when to do advance care planning or what to include in your advance care planning and it really depends on what’s going on with the person, you know everybody should have a health care proxy, but you might not want to talk about other things until it’s a little bit more appropriate in terms of the patient’s disease core. It really depends, but if you’re taking … I assume you’re asking if you’re taking care of a patient that has … are you asking about taking care of a patient with more chronic pain type issues or …

Alex: Yeah, chronic pain.

Jesse: Oh, for chronic pain, so if you’re taking care of a patient with chronic pain, yeah there are several things that I like to try to cover. So, a lot of chronic pain, kind of initial visit, ought to be some psycho education about chronic pain. So talking about the fact that … and the way that I put this to patients is … you know better than I do that your pain is not likely to go away completely, and most patients will say yes, I know I’ve had it for 10 years, I know it’s not going to go away completely, correct.

But however, there are things that we can do in working together to make your pain better, and that it’s not just pain severity that we’re concerned with, we’re concerned with how bad your pain and also what you’re able to do.

Alex: Yeah.

Jesse: Because it’s a very different person that has chronic pain and is bed bound, then somebody that has chronic pain and is working a full time job, right? So we know that people’s quality of life is much better when they’re engaged and so, the idea is to focus, not just on pain, but on function. So, you set that up early with people that you’re going to be focusing with them on chronic pain and function, and that you’re going to be working with them on identifying what that means to them.

So like I had a patient in clinic yesterday, I was having this conversation with somebody who is at home most of the time, and I said to him … and actually, I was working with a student of mine … my student was … it seemed like sort of thinking that, well the patient’s on disability and that’s kind of how it’s going to be, but most people don’t enjoy just sitting at home. Even if somebody’s on disability, they can leave the house. So what is it that this person would like to be doing, and I asked him that, and he came up with all kinds of things that he’d like to be doing, some of which are probably out of his reach, just, you know, practically speaking, but some of which make a lot of sense, and just getting to know him better on that level will help me brainstorm with him about what might be possible and setting it up early, like that, that we’re going to work together in achieving these functional goals is really important.

And that it’s not going to happen over night, that if we all … I know that they wish that this could just happen tomorrow, but you know, with some patience, we can both work together to move this forward and get them closer to these goals. That’s really the initial conversation.

Alex: Do you do anything for those patients with acute pain, that you think actually may develop into chronic pain, like your cancer patients undergoing curative therapy, like do you prep at all … expectations that this … you don’t want this person on long setting opioids, but you’re good if you use them now? You understand?

Jesse: Yeah, that’s … you know, I have to be honest that my … I usually see them after they’re already on long term opioids, so I’m usually seeing them downstream, but in thinking about how one could handle that, and I certainly have done that in the past in my practice, I guess I can give the general answer to you, that any time a patient has started on opioids, I would recommend in setting it up, unless the patient is clearly at the end of life, right?

I would set it up as, we’re going to try this medicine, and it may work and it may not. I really hope it works and that’s why I’m starting it, I wouldn’t start it … I wouldn’t recommend it if I didn’t think it would work … but if it doesn’t work, then we’re not going to continue it because you don’t need to be on a medicine that’s not helpful, and there may come a time where this medicine is helpful, that you might not need it anymore. Wouldn’t that be nice if we could remove a medication that is just adding to your pill burden, and maybe putting you at risk for some harms? So we’re going to continue to evaluate that as time goes on.

We’ll just continue to have a dialogue about it and you let me know how you think it’s doing, I’ll let you know what I’m observing, and we can figure it out together.

That’s kind of the general approach that I use in patients who are being started on opioids.

Alex: So last question by me, we’ve danced around terminology a lot, we’ve talked about chronic acute pain, we’ve put air quotes around nonmalignant, or malignant, or cancer pain.

Jesse: Yes.

Alex: How should we be categorizing, like what words should we be using when we’re talking about this?

Jesse: Yes so, chronic pain is typically … there’s lots of definitions of chronic pain, as you can see it’s typically… because there’s lots of definitions out there for chronic pain, but typically chronic pain is defined as pain that lasts for more than three months, and some people will say, be on the period of normal tissue healing, whatever that means, so I think it’s reasonable if you have a patient that has chronic pain, if you have a patient that has pain that lasts for more than three months, it’s not unreasonable to call that chronic pain.

If it’s a patient with cancer, then it’s not unreasonable to call that chronic cancer pain. I think it’s also very important to make that distinction if you have a patient with cancer who has back pain, you want to make the distinction that this is a patient with chronic low back pain who also happens to have cancer, because I can’t tell you number of times that I’ve done an inpatient palliative care consult and the patient is sitting there on their PCA and their PCA is going bonkers because the patient is pressing it all the time, and I’m like what are you pressing that for? What kind … is it your cancer pain? Oh no, it’s my low back pain I’ve had for twenty five years.

Well you know, that’s not responsive to opioids, so that’s what terminology can become important, and so I hope that that’s a helpful answer. There’s not a real, clear cut answer to that question.

Alex: So Jesse, I hear you have a survey about chronic pain and palliative care, could you tell us about it and who you are hoping to fill … complete the survey, and why they should do it?

Jesse: Yes, so … I should’ve mentioned this way earlier in the conversation so that we could’ve talked … I apologize, so I could’ve inserted this more … but, basically, born out of this interest in how we as a profession are all dealing with this in our practices, right?

I’m collaborating with Christine Richie at USCF and a few others to try to get a handle on what’s actually going on in our practices. If you are a clinician that prescribes opioids in an outpatient palliative care practice, and by clinician, I mean physician, nurse practitioner, physicians assistant … and you have an ambulatory palliative care practice, and you see patients with, what we are calling, chronic cancer pain; so patients who have pain that lasts for more than three months and they have a history of cancer but they don’t have an active malignancy, and they are not currently receiving treatment.

So if these are the types of patients that you see in your practice, then we would love for you to fill out our survey, and in the survey, what we are asking people is to help us understand how big their practices are, so how many of these types of patients they’re seeing, whether they are thinking about these patients as chronic pain patients and employing some of the recent guidelines that have come out … I’m surprised we’ve gotten this far into the conversation and haven’t even talked about this … but, in March of last year, the CDC came out with its’ guideline for opioid prescribing for chronic pain and even though it excluded patients with cancer, I would argue that some of these same principles that are in that guideline apply to our patients with what I’ve just called chronic cancer pain.

The principles of, as we’ve already discussed, weighing risks and benefits, assessing for opioid addiction, looking for concerning behaviors that arise, monitoring patients using your urine drug testing, and doing opioid treatment agreements, which include an element of informed consent around the opioids; all of these things are things that help protect our patients from harms, and who are on long term opioid therapy and so, we want to know, are people aware of those guidelines? Are they using the guidelines, if so, how? If they have a patient with addiction, are they treating addiction? Do they have a waiver to prescribe people morphine for opioid addiction? Are they encountering concerning behaviors that arise in individuals on long term opioid therapy, like do they see people who have cocaine in their urine, lost or stolen prescriptions, emergency room visits … are they trained? Do they have any training to manage those things, how are they managing those things?

That’s what the survey is all about.

Eric: That sounds like an absolute fabulous survey. We’re going to have you back on when you get the results.

Alex: Right! We want to know what people …

Jesse: I’d love that.

Eric: We’re going to have a link to that survey on our website, so you can just visit the website to find the link for all our listeners, and maybe we can just end with a little more of the song. Is that okay, Alex?

Alex: Jesse, thank you so much for joining us for this podcast.

Eric: Yes indeed.

Jesse: Thank you!

Eric: REM is a good choice, one of my favorite concerts … seeing REM in Tel Aviv.

Jesse: Wow.

Eric: Radiohead opened. It was the day that Jerry Garcia died.

Jesse: Oh my goodness.

Eric: Very sad day. Sad day in the audience.

Alex sings “Everybody Hurts” by REM.

Alex: Well I got some of the notes. That was pretty bad.

Jesse: That was fabulous.

Alex: That was pretty bad!

transcript edited by: Sean Lang-Brown

by: Alex Smith

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