Monday, December 11, 2017

Prognostication in Hospice and Palliative Care - A Podcast with Christian Sinclair

For this weeks podcast, we talk all about prognostication with Christian Sinclair (@ctsinclair).  Christian is a palliative care physician at University of Kansas Medical Center, past president of AAHPM, recent AAHPM "Visionary" awardee, and Pallimed social media guru.

We go over a lot of topics at the heart of prognostication in hospice and palliative care including:
  • The importance that prognostication plays in daily practice, especially in goals of care discussions
  • Helpful tools and skills to estimate prognosis 
  • How prognosis changes the way we think about prescribing opioids
  • How to think about prognosis when it comes to hospice eligibility and why it may be that one of the most important tools used for prognostication in the hospice setting, the hospice eligibility guidelines, were last updated over two decades ago.
So we have a ton to talk about and we would love for you to continue this discussion in the comments section of this blog, on Facebook, or on twitter.

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by: Eric Widera (@ewidera)



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

Alex: This is Alex Smith.

Eric: Alex, who is our guest today?

Alex: We have a hospice and palliative medicine visionary with us today joining us via Skype.

Eric: A visionary.

Alex: We have Christian Sinclair. Christian is a man who needs no introduction. He has many titles. Most recently, he was president of AAHPM. Christian, welcome to the GeriPal Podcast!

Christian: Ah, thanks for having me on, you guys. This is exciting. I'm glad to be here.

Eric: We start off every podcast with a request for a song. Do you have a request for Alex to sing?

Christian: I do. Casimir Pulaski Day by Sufjan Stevens. Not many people probably know this song, but it is very, very palliative in that it hits on topics of serious illness, spirituality ... It's just a great song, too.

Alex sings “Casimir Pulaski Day” by Sufjan Stevens.

Eric: So Christian, what was the title again and what's the significance of this song?

Christian: Yeah, it's Casimir Pulaski Day, which is a celebration in Chicago, maybe the whole state of Illinois. I'm not quite sure on that, but it is celebrating a Polish general who came and helped the United States in the Revolutionary War. But that doesn't have so much to do with the song, except for Sufjan Stevens made a whole record about Illinois songs and that was one of them. It's just a great song about how someone deals with illness of a friend. I find it so real in listening to the words of the song, and the end is so majestic. It's sad but uplifting at the same time. It's one I go back to a lot when I'm thinking about palliative care issues and maybe a tough day at work. I can listen to that and it helps me get to a better place about a day.

Alex: Yeah, it's such beautiful lyrics. I love the specificity of this song. You can really imagine his relationship with his girlfriend and the trueness of it, the struggle with his spirituality. He says, "We went to Bible study, we put our hands all over your body and prayed but nothing happened." Questioning. It's just so real. It's vivid.

Christian: Yes. It is.

Eric: At the end of this podcast, Alex, you can play a couple more verses.

Alex: At the end of the podcast. But the end will not be majestic and uplifting, I warn you. I don't have a full choir to do that ending.

Christian: No big orchestra?

Eric: We can round up some of our team outside.

Christian: I would recommend, he did play this at Austin City Limits, and if you can find that online, it's a pretty entertaining and a beautiful watch.

Eric: Well, we invited you on to talk a little bit something near and dear to Alex and my heart, which is prognostication.

Christian: Yes.

Eric: And thinking about prognostication, including how to think around hospice eligibility and other issues. Maybe before we dive into it, how did you first get interested in prognostication? Is it ...

Christian: It's been something that has lured me and vexed me and made me think about so many different things philosophically in life ever since I did my hospice and palliative medicine fellowship in Winston-Salem. Dick Stevenson, some of you may know, he was my fellowship director and he ... I went to him one day. I was rounding at the inpatient hospice unit, and I just had a day where three or four family members in a row for different patients had come up to me and said, "How long is this going to be? How long do you think my loved one is going to live?" And, you know, this is a hospice house. We had pretty much ... All of these were pretty open conversations about mortality and prognosis.

But I just found myself really struggling with: why did I get all these questions? How am I supposed to know? I've never really had the training. Yes, I'm interested in this and I've done some self-study of some research because I was interested in hospice and palliative medicine, but I really just struggled with the essence of the question. How are we supposed to know and why do people ask? He had a really great response when I said, "Why are they all asking me? I don't know." He said, "Why don't you ask them why they're asking you? Ask the families why they're asking this question."

It's not something that I do routinely now, but as a learner, it helped me understand all the different reasons why people want to think about the future and what plans they need to make with their own lives, with their families, with their work lives, for their loved ones. So that question back to me, answering a question with a question, like, "Ask them why they want to know," and it just got me thinking: how can we do better as clinicians? It's always frustrated me whenever I hear anybody start to give a presentation about prognostication or any sort of end-of-life topic and they usually will say at some point, "Doctors are all horrible at prognosticating."

That's not necessarily true. It has this mysterious quality to it that I find very attractive, but I'm aspirational. I hope we can do better with it.

Alex: Let's go back to the clinical ... I love the starting with the clinical, because that's so much of our audience, too, with the GeriPal podcast, as is your audience, too, I would assume, at Pallimed. Clinically, in your day-to-day practice, what sort of time frames are you talking about in terms of the patients that you're seeing in your work?

Christian: I'm at the University of Kansas and I do primarily outpatients palliative care clinic in a cancer center, seeing patients with the BMT teams, patients with solid tumors, and when I do inpatient consults about 11 to 15 weeks out of the year, I am seeing patients from all different sorts of service lines: heart failure and neurology, trauma ... So that can vary quite a bit, but the population that I'm most concentrated on right now has really been more of an outpatient upstream palliative care population that ... I have patients that have an expected prognosis in the years range, and even some that are really in a survivorship mode with chronic graft versus host disease that prognosis isn't really a big, huge question that we're grappling with.

Alex: Yeah. Some of those folks in the out ... It's different from my clinical work, which is an inpatient consult service where prognosis is often more in the time frame of hours, days, months, years at the most. Some of these folks might live for years or decades these days, right? With cancer, some of the new treatments.

Christian: Yes. That's where I think it is important for us to start to document pretty much in every note I write what I think the prognosis is. Even if I think it's gonna be at least several years barring any major change in their health status, that helps inform how I'm gonna approach chronic opioids. If I think their prognosis is several years, I really need to take a different look at pain control options for them and have different conversations.

So for me, prognosis is probably more primary in my clinical decision-making than goals of care because understanding what the prognosis is helps actually drive the goals of care, which actually helps drive the plans. I know it's pretty popular these days in palliative care to talk about goals of care drive the plan, but prognosis really, for me, comes before that.

Eric: When you walk into a patient's room and you're thinking about prognostication, which you can split up and tell ... like, if I go to a fortune teller, there's the foreseeing, so she's gonna see what's in my future and she's gonna then foretell, tell me what's in my future. How do you think about doing that? Let's start with the foreseeing. How do you think about that part of prognostication?

Christian: For me, it starts way before I'm actually crossing that threshold into the room. When I'm doing my pre-charting, pre-consultative work, I'm starting to pull up different studies and I have smart phrases for lots of different diseases now. Basically, any time I encounter a new disease, I try and build a prognostics smart phrase that helps send me to different links and to different research studies. So I'm trying to really go in pretty informed.

In addition to doing my own background work and looking at the literature and the SEER database if I'm looking at cancer, is making sure I'm talking to the primary team, whoever consulted me, and getting an idea of what they think the prognosis is because if they differ greatly from what I think the prognosis is, then we need to have our own medical family meeting to figure out: are we on the same page or do we see things differently? What's been amazing is, once I start documenting that, it drives a lot of conversations, too, when clinicians differ on what they think the prognosis is.

Eric: You mentioned the SEER database. Do you use any other tools to help you think about, let's say, cancer prognosis or other types of ... I'd say heart failure, or ... Any other tools?

Christian: I struggle with some of the tools that are out there. I find that they don't always apply to the population I have. I think your guys' work with ePrognosis is a great example that there's so many different options out there, you really need to make sure: does this reflect the patient I'm taking care of? I have not used tools like PiPs or the PAP score, those sort of thing. And even just straight up the palliative performance status as an indicator of prognosis. I use those as sort of rough guidelines, maybe, but I never in my documentation say because of those tools, I'm definitely saying this is the likely prognosis. I really always couch it in terms of, "This is my professional estimation."

Alex: It sounds like the main thing that you rely on, then, is looking at the clinical studies. Are those primarily clinical trials, I would guess, for people-

Christian: Yeah.

Alex: Right? Something like that?

Christian: Yeah. Especially in cancer care, there's new clinical trials that are coming out all the time that ... I've learned to not be afraid to email the oncologists to say, "I have no clue what study you're looking at that indicates that this therapy is indicated for this cancer. Can you point me to that?" I get to learn about it. I get to show the oncologists that I'm actually interested in what they're doing and how they're doing it, but then I get to see some of the survival curves and actually get to look at the patient population who this was tested in and say, "Does this really apply to the patient that I'm seeing, or do they have a different set of comorbidities that I need to factor into their prognosis?"

Alex: It seems like every day, there's a new drug or treatment that ends in -mab or -ib.

Christian: Yes. Oh, absolutely.

Alex: And costs a bucket-load of money.

Christian: Yes.

Alex: Which hopefully, the insurance will pay for. I worry, though, that some of those patients for those studies are carefully selected by the drug companies to show improvement.

Christian: Right.

Alex: How do you factor in ... because you mentioned before that key piece ... so important, is: do the patients in this study reflect the patient in front of me?

Eric: And generally, functional status is actually really good in individuals who are enrolled in these trials versus some of the patients that we see, and definitely did not include any hospitalized patients the majority of times.

Christian: Right, right. I think that's where having a good relationship with the clinicians you're working with to say, "Hey, this is a study, but this patient's ECOG functional status of three and these are my concerns. I'm really worried if they're gonna have the same results as this patient or as the study." That conversation allows the oncologist and I to get maybe to a better compromise for what we think a shared prognostic viewpoint of that patient is. There's been plenty of times where an oncologist sheds light on something that I wasn't necessarily aware of and I'm like, "Okay, I can see that a little bit differently now," and it's not just anecdotal ... you know, "I had a patient who walked in and has lived 18 years because of this medicine" type stuff. It's pulling on studies.

I really have come to appreciate how much oncologists really know the data that's out there in their field. On one hand, it's an appreciation for the people I get to work with, but on the other hand, it helps actually reinforce for me the need for palliative care. I want the oncologists being really focused on those studies and knowing that data about what weird new medicine helps what unique new cancer, and palliative care can play that role to handle quality of life issues.

Eric: How do you also think about, let's say, other diseases that also may affect someone's prognosis? Let's say you have somebody with a stage two lung cancer but also has New York heart classification for heart failure with advanced COPD and a bad BODE score and ... How do you incorporate all that information?

Christian: I try and figure out ... I go back to the functional status as really the vital sign that matters to me, and really help that drive, and not just the functional status what it is now, but also that change over time. I think that's a really key piece and there's been some research out of Japan that has shown that change over time in functional status has been really helpful as a prognostic indicator, so ... And then I make sure I document that in my notes.

There's a great study by Eric Roland looking at palliative care consultations and how often they use evidence-based prognostication, and it was surprisingly low. I was really impressed that they published a single-site study, so basically looking at themselves and say, "Hey, we're not really good at doing evidence-based prognosis."

It's probably pretty good for most palliative care teams to say, "I think this patient's prognosis is in the weeks to months range." That may feel very daring, almost, sometimes to write in the chart, but for us to actually write, "I think it's in the weeks to months range because I've looked at their BODE score and I've looked at their NYHA classification, and per this study, it makes me think that their prognosis is this," that takes a lot more effort, but I think it helps show our professional respect for prognostication and this isn't just fortune-telling, this isn't just a good clinical gut sense, but that we actually have a good knowledge and background to share this information as part of our clinical expertise.

Alex: It's interesting. And yet, there is something to that eyeball test, isn't there?

Christian: Absolutely.

Alex: There is something like, you know, you read about the patient, you put them into some index, you look at the studies, you say, "Okay, I think that this patient's prognosis is X," and then you go see them. You say, "Whoa."

Eric: That just happened to me the other day. We got a consult regarding hospice eligibility on someone. I took a look at his chart. I thought, "Oh my God, this guy is ... Why are they asking about hospice eligibility here?" Then when we actually walked into the room, my very first inclination was: "Oh my God, this man has days to live." He died, like, the next morning, and that did not come out in the chart or ...

Alex: So the chart suggested that he had longer than six months.

Eric: The chart looks like this guy had years.

Alex: Years.

Eric: But there was something to just that eyeball Gestalt test that just told you no. And it wasn't in the labs. It wasn't in the diagnoses. He had multiple diagnoses, but-

Christian: Was it in the exam saying his skin was warm, dry, and intact? That would've been helpful.

Eric: It was the A&O x 3 that was ... It was actually just walk into the room and you realize, "Oh. I would not be surprised if this guy died in the next week."

Alex: Yeah.

Christian: Right, and I think that's where I would love to see our field study what is behind that, to really start to pick apart what that is, because I think a lot of it is functional status in that eyeball assessment. But it is ... that first look is tremendous in prognostication.

Alex: You mentioned earlier that if somebody had a longer prognosis, you might rethink the way that you prescribed opioids for them. This is such a hot topic. We're doing a podcast with Jessie Merlin at Pittsburgh about chronic pain and opioid prescribing and palliative care. But if you could ... Are there any hard and fast rules or guidelines? Because this is so topical important to people listening.

Christian: Yeah. First, a shout-out to Jessie Merlin. She's great. She was a really surprising go-getter at AHPM back when she was a resident. So if there's any residents or med students listening to this and thinking about going to a conference or thinking about a career in this field, definitely go into something like the annual assembly for hospice and palliative medicine like Jessie did, is a great way to show you can make a difference in this field. We're still pretty young and young leaders are coming from everywhere, so just want to put a plug-in for Jessie real quick.

Sorry, go back to that question.

Alex: Oh yeah, so back to the question about ... You mentioned that you rethink the way that you're gonna prescribe opioids for somebody who has a longer term prognosis. Do you have any hard and fast rules? We heard one of our fellows say maybe at one year they would really rethink things. If the prognosis is less than a year, then not so worried about the addiction issue, but ... in longer-

Christian: Yeah. In our clinic, we have started doing opioid and addiction risk screening for ... We're trying to get to 100% and it's harder than you think if you've never tried it. But we're trying to do that screening and really individualize it for patients that are higher risk but maybe an even shorter prognosis, and really what they care about. We may be a lot more cognizant about opioid prescribing in them.

I don't really have hard and fast rules about certain ... once a certain prognosis is triggered that I am much more cautious. But it helps me to have that conversation. When I write down on my plan the prognosis is expected to be at least a year to several years, and then my next plan is what I'm doing about their pain, to tie those two things together to say, "Gosh, is this someone who I would expect to be on opioids at a high dose or a low dose a year from now? And what are we doing to help make sure that that isn't really their only leg of the stool for their pain control?"

So it really prompts me and the clinicians that are part of our outpatient team to say, "Let's have that conversation with the patient," and say, "Do we expect that they're going to be on opioids long term, and if so, what does that mean for their life?" I think prompting that conversation is really important and then individualizing the care from there.

Eric: All right. Equally challenging issue that many of us face on a near daily basis: hospice eligibility. Prognosis less than six months ... I know you were a medical director and a head honcho of a large national hospice organization.

Christian: Yes.

Eric: Thoughts on hospice eligibility? How should we be thinking about it? Things that we should be doing differently or the same?

Christian: Oh dear, have we missed a wonderful opportunity to have a population-based study on prognostication. All we expect medical hospice directors to say, "Yes, I certify six months or less," but what ... I don't know how to change this despite my visionary status, but to get us to say, "Hey, let's actually write down some estimates of what we think that patient's prognosis is." I think we, in the 35 years of Medicare hospice benefit, we've missed a great opportunity to collect a lot of data points about more exact prognostication and figure out when we're wrong, why we're wrong or when we're right, why we're right.

That being said, since I can't change what Medicare hospice is gonna do about being more accurate about prognostication, I think it's important to look at the studies. In 1999, Fox did a study looking at the guidelines at the time, which are really essentially unchanged, and they used the support study data and they basically showed that the hospice guideline criteria for CHF lung disease and liver disease are not that accurate. In fact, when they applied them even pretty strictly, 50% of the patients were still alive two years out.

So we've kinda sat with the same criteria for a long time and not challenged ourselves. Now, I hope that doesn't make any hospice people listening to this really afraid, like, "Oh, gosh, we're getting beat up already." That's not what I want to make people think about at all, but I think we can do better.

Eric: Why do you think that is? I don't know any other guide ... Those guidelines were created, what, in late '80s?

Christian: They were updated in the mid '90s.

Eric: Mid '90s.

Christian: By NHPCO.

Eric: Two decades ago they were last updated. I don't know any other guideline that was last updated two decades ago that is currently used on a daily basis.

Christian: Right. Right, and is important for the care of so many different people at a critical time in their lives that-

Eric: But why is that? Why is there stagnation with these guidelines?

Christian: I'm not sure. NHPCO is the organization that originally created the guidelines, and with any guidelines, you don't want it to become law, but what it has become with Medicare is, if you don't meet those guidelines, we can claw back money and you-

Eric: Because technically, they're guidelines, not criteria, right?

Christian: Right.

Eric: Nobody calls them criteria despite the fact that it should be a guide.

Christian: Exactly. I think part of the stagnation is probably due to ... this is my own take. This is not anybody else's take but Christian's, but not wanting to poke the bear. Be careful. If you start messing with prognostic criteria, it could get worse and get more strict, and that means less people having access to the hospice benefit. And not necessarily is that good for hospice organizations in a business structure, but is that good for healthcare in general? I think that makes a lot of people really cautious.

Eric: Because that's one of the methods that hospice directors have as far as giving leeway to prognosis, is loose guide points, right?

Christian: Right. Absolutely. Absolutely.

Eric: I guess the other way is a good narrative right? Can you describe what that is and what you do as a hospice medical director to certify someone?

Christian: Yes. When someone is brought onto hospice, the medical director has to review the medical records here from the nurse and the social worker and the team that has seen the patient. In many cases, the medical hospice director has not personally laid eyes or hands on the patient. They are taking a report, so they are trusting a lot of other evaluations of the patient and they have to compile all the evidence. They don't get that walk-in-through-the-door first look at a patient to say, "Yep, I see why they're eligible." They have to really do it with that chart review, which can ... not always tell the whole picture. That's why I think the hospice nurse is really critical: because they've actually laid eyes on the patient and can really share unique details that aren't always in the chart.

But really, it's a good description of the underlying disease process, whatever it may be, and the functional status or limitations that are showing that pattern of decline over time. This really surprises most new hospice medical directors: you can't write something ... Let's say someone comes on hospice, dies three days later before the hospice medical director ever gets a chance to write that certification that they're terminally ill. You can't just say, "Patient had colon cancer and died." That's actually not enough. Even though the patient clearly was eligible in the fact they died in three days, you have to still write a fairly detailed description of what were the processes and the medical findings that were present at admission that made that patient eligible.

Eric: One more question about hospice and eligibility. People who don't have a single terminal condition, you have multi-morbidity, they're doing poorly, they're not meeting really strict guidelines, but they're looking bad. As a palliative care clinician who is making a referral to hospice, what would be helpful from my side to actually have documented in the chart saying that this guy has less than six months to live or this-

Christian: Oh. Now that there's no debility or failure to thrive category necessarily or guidelines that are okayed by the local coverage determinations of Medicare, I think something that all palliative care clinicians could do is make sure that when we're referring someone to hospice that we're teeing up the best clinical information in our estimate.

I can tell you as a hospice medical director, when I got a great note from a primary care physician or oncologist or a palliative care physician saying, "This is why I as an unaffiliated, independent, outside physician think they belong on hospice," that was so helpful to me to say, "I can agree with this, obviously. All truthful stuff, but I can agree with this and I can put this in my note," and I would be okay going to a Medicare audit to say, "I believe that this patient belongs on hospice," and I could fight that, because I have an independent outside physician's opinion.

So I think all palliative care physicians should do their hospice agencies that they refer to a great service and make sure they give a great clinical summary.

Eric: Just because they don't meet guidelines doesn't mean they're not hospice eligible, are right?

Christian: Yeah, exactly. Exactly.

Alex: Would love to skip to talking about the other aspect of prognosis. We talked about the communication piece. We actually started there with asking the patient, "Why do you want to know? What does this mean to you?" I wonder if you have any other key phrases or questions or things you tell trainees to make sure you incorporate into the communication aspect of prognosis.

Christian: There's a lot of great stuff written out there, but one of the things that I probably haven't seen written about often is, once you get that permission to talk about prognosis and you share the prognosis and maybe even how you came to that finding, once that settles in and everyone's had a chance to deal with that emotionally, I find asking the question of: "Did hearing that time frame surprise you?" It may sound a little bit cold or rote on this podcast, but I think in the clinical setting and with the right emotional valance and trust already built, that that question helps both patients and families recognize that they probably knew this themselves for a long time, but it may have been much harder to say it and address it out loud, and that they had probably been making plans or doing things recognizing that their prognosis was not that long, even though their words and some of their actions may have made it seem like, "Oh, we're gonna live forever and nothing will ever make this disease worse. We'll do great."

So I find that question: "Did hearing any of that surprise you or upset you?" ... and for the most part, like, 95% of patients say, "No, I think I knew that," and they usually will share something after that that helps their family say, "I thought you didn't know," or the family says, "Well, we were trying to be strong for you," and the patient says, "I was trying to be strong for you," and all of a sudden you get a different connection that patients and families realize they were kind of hiding the truth from each other, even though they both knew it at the same time. So I find that that's been an effective emotional touchstone for patients and families.

Eric: Any other tips or tricks that you have around prognostication?

Christian: I strongly believe in the permission-based aspect because oftentimes, you'll have family say, "Oh ..." They'll be in the room with the patient and say, "How long do you think this will last, Doctor?" And I'll make sure I turn to the patient and say, "Is that something you've been wondering about?" Same thing if the patient's the one who asks that. I'll kind of turn to the family because sometimes there's a family member that's like, "I'm not wanting to hear this at all."

Now, I guess a new area for prognostication disclosure is the concept of open notes. I don't ... Do you guys have open notes?

Eric: We do.

Christian: If we're good palliative care clinicians and we're documenting evidence-based prognosis, we may be disclosing prognosis in a chart that someone's reading on my chart, an epic or something like that, before we've even had a conversation.

For those who don't know, open notes means your patients and families, if they have access to online patient portal, have the privilege and right to see the clinician's notes unedited. I think that's gonna be a new area for us to really think about, and I've had to start disclosing to patients.

Eric: Yeah?

Christian: To say, "Hey, that may be in my chart or there in my note."

Eric: Yeah? Are you, big, bold letters, "Spoiler alert" written on your chart?

Christian: No. I should think about that. Yeah, spoiler alert.

Eric: Do not read before this line if you don't want to hear a prognosis.

Christian: Do you want to hear how this is gonna end? No. There's a big twist.

Eric: Well, Christian, thank you very much for talking with us.

Alex: Thank you so much, Christian.

Eric: Alex-

Christian: I love what you guys have done with the podcast. It's fantastic, and I hear there are more podcasts to come from lots of different arenas, so everyone-

Eric: Ooh. The more folks doing podcasts, the better.

Christian: Yes.

Alex: The more, the merrier. We look forward to that. That'd be great.

Eric: Alex, you want to end us with a little bit of song?

Alex: Yeah, we'll do a little bit more of this -minus the majestic ending.

Alex sings “Casimir Pulaski Day” by Sufjan Stevens.

transcript edited by: Sean Lang-Brown
by: Author's First and Last Name goes at end of post

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Tuesday, December 5, 2017

Palliative Care, Chronic Pain, and the Opioid Epidemic: GeriPal Podcast with Jessie Merlin

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 editorial that 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 disucss 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

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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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Wednesday, November 22, 2017

Tom Gill on Distressing Symptoms, Disability, and Hospice

Restricting symptoms and disability in last year of life

by:Alex Smith @AlexSmithMD

In this week's GeriPal Podcast, sponsored also by the Journal of the American Geriatrics Society, we talk with Tom Gill, MD, Professor of Medicine at Yale.

With guest co-host Dan Matlock, MD, from the University of Colorado, we talk with Tom about his recent JAGS publication on the relationship between distressing symptoms, disability, and hospice enrollment.  Tom conducted this study in a long running cohort of older adults that has made a number of outstanding contributions to the GeriPal literature (see links).

Major points:

  • Restricting symptoms start 6 months before death, but most folks didn't enroll in hospice until 2 weeks before death
  • Disability increased markedly over the last months of life, and precipitated hospice use, but most hospice and palliative care programs are not set up to help with a persons daily needs.  There's a mismatch between the need for daily assistance and the hospice and palliative care services offered.

Tom's song request?  Stairway to Heaven.  This podcast was recorded at the recent Beeson meeting, an aging research meeting, near Albuquerque, New Mexico.  At the end, you hear about 30-40 of us singing the end of Stairway around a campfire.

As in singing, "And as we wind on down the road...:"

Nailed it!


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Alex: Welcome to the GeriPal Podcast, this is Alex Smith, and we have a special co-host with us today. We're coming to you from the Beeson meeting in Albuquerque, New Mexico, and we're joined today by Dan Mattlock, who is an Associate Professor at the University of Colorado. And welcome to the GeriPal Podcast as a co-host today, Dan.

Dan: Thank you very much, I'm excited to be here.

Alex: Terrific. And we have a special guest with us today at the Beeson Meeting. Beeson, for those of you who don't know, is a geriatrics and aging-focused research meeting of clinicians, and this year it's at a really fancy-schmancy nice resort near Albuquerque. And we're joined today by Tom Gill, who is Professor of Medicine at the Yale School of Medicine, and an extremely well-known geriatrician researcher. Welcome to the GeriPal podcast.

Tom: Thank you, Alex. I'm looking forward to our discussion.

Alex: Terrific. So, we usually start out with a song request. What would you like us to perform?

Tom: How about 'Stairway to Heaven?'

Alex: A terrific choice. We will give it our best shot.

Alex sings "Stairway to Heaven" by Led Zeppelin (Jimmy Page and Robert Plant).
So this is a podcast in a series of podcasts we're doing between Journal of The American Geriatric Society and GeriPal. And today we're going to talk about an article that is in early view on the JAGS website. And this is an article about restricting symptoms, disability, and hospice use from a long-standing cohort study that Tom has been running.

Do you want to tell us a little bit about ... Just to set it up for our audience, and mostly clinicians, why this study is important? What clinical question are you addressing here?

Tom: Yeah, we know that the use of hospice is ... Or, it's underutilized in a few ways. One is, a minority of older persons, or persons in general will take advantage of the hospice benefit. And second, length of stays in hospice are extraordinarily short. And, so from our perspective, it's a wonderful resource that's been underutilized.

Alex: Terrific. And could you tell us a little bit about the cohort in which you study this issue?

Tom: We assembled a cohort back in 1998 of 754 persons seventy or older living in the greater New Haven community. They were all living in the community, and they were all non-disabled. And we were interested in primarily trying to determine the mechanisms underlying the onset of new disability and functional decline over time. It was supposed to be a two, and then a three year study, but we've continued to follow this cohort for now twenty years, interviewing them every month.

Alex: Incredible study, and a number of important publications related right at the geriatrics/palliative care interface have come out of this. Audience members may be familiar with the study in the New England Journal about trajectories of disability towards the end of life, and Sarwat Chaudhry published a paper about restricting symptoms, and sort of delved into which specifics symptoms change in frequency towards the end of life.

Dan: Yeah, that's one of my questions from reading this. So, what is a restricting symptom, and how is that different from disability?

Tom: Sure. Every month we asked the participants two questions; Whether they've cut back on their usual activities because of an illness, injury, or other problem, or whether they've had to spend at least a half a day in bed because of an illness, injury, or other problem. And the reason for those questions was because that was going to be our mechanism to identify bad things that happened that didn't lead to a hospitalization.

This was the precipitating events project. We were interested in identifying the events that precipitate disability. Our prior work had focused almost exclusively on hospitalizations, but the majority of persons who became newly disabled were not hospitalized. So we thought there must be other bad things that are happening. So restricted activity was our mechanism to identify less severe events.

And then we were also interested in determining the reason for restricting activity. So, if someone said yes to either of those two questions, we asked a series of questions about specific symptoms, and for this study, we focused on fifteen of those that varied from shortness of breath, to osteoarthritic pain, to fatigue, et cetera. And if they said yes to the symptom, we asked whether that caused them to have the restricted activity. So we linked the two.

Dan: And then how did you define, or how did you assess disability?

Alex: And how was that different?

Dan: And how was that different?

Tom: Right, so we ... Every month during the same interviews we ask about thirteen different functional activities for basic ADLs. Bathing, dressing, walking, and transferring. And we asked them, at the present time, do you need help from another person to do those tasks? There are five IADLs and four mobility-related ... Or, three other mobility-related items.

Alex: Terrific. And in this specific ... This particular study, you looked at the relationship between hospice use amongst decedents, and there were about four hundred some odd decedents, and I think about 40% of them ended up using hospice. And you looked at the relationship between restricting symptoms, disability, and when they enrolled in hospice. Is that ...

Tom: So, the supposition was that there would be either no relationship between restricting symptoms and the use of hospice, or disability and the use of hospice, in part, again based on what we know of hospice, that it's generally underutilized. And we thought that folks were taking a disease-specific approach to the use of hospice, as opposed to focusing either on function, or on these restricting or troublesome symptoms.

So that was the underlying kind of premise, and we thought, "well, if doctors aren't putting much stock in these very important features, that might be an explanation in why hospice is not used to the extent that it might otherwise be.

Alex: And can you tell us what you found?

Tom: So, contrary to what we found, or what we thought, there was actually a fairly strong relationship between the occurrence of restricting symptoms in any one month, and the use of hospice. Restricting symptoms increased the use of hospice by 62% in any one month.

The relationship for each additional restricting symptom, I believe the increase was about 9%. And for disability, for each additional disabled activity was around 10 or 11%.

But, that has to be interpreted in the context of the median length of stay in hospice, which was only twelve days. So there were strong relationships between these exposures and the use of hospice, but hospice was used in more than half the participants in less than two weeks. So it was fairly late in the game.

Alex: And I think clinically, you know we're all clinicians, I think it makes sense intuitively that as somebody's symptoms progress, they're more likely to enroll in hospice. I remember early on in my clinical training in palliative medicine, David John Syracuse, one of my mentors, said, "you can ask patients, what is your body telling you?" And when your body is hurting and suffering, then that's often when they sort of make a change in their goals of care, and there's a shift and they might be more open to hospice.

Does that ring true with your clinical experience, Dan?

Dan: Oh, yeah, completely. I think ... And that actually was another question I have. So, did you ... If you started this in 1998, palliative care wasn't very pervasive at that time. Do you see any changes over time, or do you have enough people to look at that?

Tom: I think we did look at time as an interaction, and we probably were not powered to evaluate that. There was not an interaction for time. The hospice movement was still in place in the late 1990's. Palliative care as a field wasn't, but hospice care was. The cohorts aged, and I think the use of hospice is increased in part because of the aging of our underlying cohort.

Now, one thing I didn't mention early ... I mean, we looked every month for the last year of life for the prevalence and the severity of the symptoms and the disability, and they were relatively flat for the symptoms until about six months prior to death. And then the prevalence of restricting symptoms started increasing, and the severity of restricting symptoms increased. But it was really not until the last month or so in which hospice use started being used ... Hospice being used.

Alex: So, this twelve day thing, I've heard from hospices, this is something that they really would like to see increase. They would love to offer hospice for longer periods of time for folks. After looking at this, do you have thoughts on ways hospices could increase the number of days they are able to provide for people?

Tom: Well, I think this is where that palliative care field can ... If folks would avail themselves more to palliative care, not to hospice ... Because earlier in the last year of life, they're not ready to make a decision for hospice. But, I think they might make a decision for hospice sooner if they're already being cared for by a palliative care clinician.

And those discussions, they need to start earlier. The decision to opt for hospice is often not made overnight. It's a decision that needs to incubate, and perhaps be revisited over the course of many weeks and sometimes months. So as these symptoms increase, and these are all folks that had clearly terminal conditions, about ... A proportion had cancer, and another proportion had organ failure, and dementia. And frailty was actually the largest group. But there weren't that many differences within those conditions. So the results were fairly robust.

But I think earlier discussions in the context of palliative care I think might improve some of those statistics, and I'm not sure if that's where the field is heading.

Alex: Hopefully that's where the field is heading. I would say, that's the idea that we get people enrolled in palliative care from the time of diagnosis with serious illness. It's a little bit trickier in many of the older adults that we care for who don't have a clearly terminal condition, who have that frailty, who have multiple chronic conditions, who don't have a clearly terminal illness, who nonetheless are nearing the end of their lives.

Tom: But, I mean, palliative care need not be limited to the end of life, and again that's where the symptoms came in. The prevalence of symptoms, of these restricting symptoms, I believe was 20% a year prior to death, and then increased quite significantly in the last six months of life.

So, even if it's not obvious that someone is in that last phase of life, they clearly have a large burden of symptoms, and it would be I think to the patient's advantage to have input from clinicians who have expertise in palliative care. Because that extra layer of care in addition to their usual care I think could be quite beneficial.

Alex: And we'll have links to the article itself, and the terrific figures, because I think the figures really tell the story. And we're describing about sort of acceleration of symptoms and disability, and I want to touch on the disability point because I think that's important too. Showing that disability increases before somebody enrolls in hospice. And that ... Is hospice ... How well does hospice and palliative care provide for the needs of disabled older adults?

I know your study didn't address that directly, but it's certainly something that's worth commenting on.

Tom: And I believe that one of our prior ... We have a couple prior papers looking at hospice in the last year of life. Descriptively, looking at symptoms before and after the start of hospice, and the restricting symptoms are reduced after the start of hospice. And ... Difficult to make causal association, but the data were fairly compelling, in terms of the value added to hospice. That's what you would hope to expect.

The same is not necessarily for disability, at least the way we defined it, because it's the need for personal assistance. And that need is likely going to be maintained through the end of life.

Dan: Yeah, your question is a good one. I mean, hospice is great, but it can't do everything for everybody, and that's kind of a tough thing for people to realize sometimes when they're sick. And disability ... If somebody's home with their family with disability, they might not be getting everything they need in hospice.

Alex: Yeah, the major needs, palliative needs, moving away further from the end of life to people living with serious illness, and the older adult patients that we care for are often needs for daily assistance type care. And hospice doesn't provide that benefit. Palliative care doesn't provide that benefit. I think it's an argument for restricting of the healthcare system to better meet the needs of older adults who are living with serious illness, which includes not just symptoms, but also disability.

The systems were mostly designed around fifty year olds with cancer, but the way demographics are changing in this country, we really need to shift the symptoms to meet the needs of older adults we're caring for.

Anything else you want to say about this particular study, or point out to our audience? Any take home points that we haven't covered yet?

Tom: Well, it's just ... These are questions that we're addressing now that weren't on the radar screen twenty years ago. For a variety of reasons, this was not designed to be a study of death and dying, but because we followed this cohort for such a long duration of time, and the vast majority of our participants have died. And it is just fortuitous that we had collected all this data, and now can start addressing some of these questions. And we would welcome ideas from the palliative care community about other questions that these data potentially can help address, because I think they're quite unique.

We've completed almost 90,000 phone interviews over the past twenty years, and have had less than 5% attrition in this cohort for reasons other than death. And we go out to the home every eighteen months to do a very comprehensive evaluation. Evaluating cognition, and depressive symptoms, and physical performance, and things of that nature. So we often say we know these participants better than they know themselves.

Dan: I've got to say, that's one of the coolest things about this, is this cohort you've followed for twenty years. So, if four hundred people of them have died, and you enrolled seventy year olds twenty years ago, that means you must have a cohort of three hundred ninety year olds you're following. Is that true?

Tom: Well, for this study, because we needed to link the data to CMS to identify the hospice cases, I believe they were cases through 2014. So we only have, I think, sixty or so participants who have not yet died. And we are continuing to interview them, and we're planning to interview them all until they've died.

The other interesting footnote here is this project was my Beeson project from 1997. I had the good fortune of combining the Beeson winner Robert Wood Johnson Generalist Award, and this got the cohort assembled. And then we exhausted the money, and I'm one of the few Beeson scholars that spent the money before the three years were out. It was a very wise investment. And then we had the good fortune of getting an NIH grant that allowed us to continue to follow up, although when I applied for that NIH grant, we had enrolled five hundred participants and had followed them for about six months with monthly interviews. The biggest criticism, and it wasn't funded the first time around, was, we don't believe you can do this.

So we resubmitted the grant the next possible cycle, and we now had follow up for about thirteen months. And 99% completion rate for these interviews. Very little attrition rate. We says, "do you believe us now?" So we were funded on that second go-around.

But there were a few times during this twenty years in which the funds were almost on fumes, and we were able to patch things together and allow us to continue. And these participants were grateful for, because we were learning a lot about the course of disability, and a lot now about what's happening in the last phase of life.

Alex: Well, that's terrific. Thank you so much for joining us. We will again have links to the article itself, and is there a website for the cohort?

Tom: It's off our ... The Pepper Center, the Yale Pepper Center site. There'll be a little blurb on the pep study.

Alex: Terrific. We'll have that link as well. Thank you so much for joining as co-host, Dan.

Dan: Oh, it was my pleasure. This was fun.

Alex: And thank you so much for joining this JAGS/GeriPal podcast, Tom.

Tom: Thank you, Alex.

Alex: Alright, let's end with a little 'Stairway to Heaven.'

Alex sings "Stairway to Heaven" by Led Zeppelin (Jimmy Page and Robert Plant).

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