Episode 1: Conversations on Pain

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Host & Guests:

  • Host: Susan Cosgrove; HCIF
  • Guest: Thomas Workman, PhD; American Institutes for Research

This episode, titled Conversations on Pain, is hosted by Susan Cosgrove from the Health Care Improvement Foundation where she serves as the Director of Health Literacy. Susan joined HCIF in 2013, bringing expertise in sociology, public affairs, and population health programming.

Today she will be speaking with Thomas Workman from the American Institutes for Research about opportunities to advance opioid stewardship through participant/practitioner collaboration. Dr. Workman is a principal communication researcher and evaluator who develops, designs, and conducts formative and evaluative research in the areas of patient and consumer engagement, shared decision making, and patient-centered outcomes research.


Transcript

This transcript has been edited for readability.

Susan Cosgrove:

I’m Susan Cosgrove, Director of Health Literacy at Health Care Improvement Foundation. I oversee HCIF Health Literacy programs, and I bring that lens to PENNJ-SOS’s patient-centered activities.

Today, I am joined by Thomas Workman Tom, welcome to the podcast.

Dr. Thomas Workman:

Delighted to be able to be here. Thank you.

Susan Cosgrove:

I wanted to begin our conversation by asking you to share a bit about yourself and about your journey. So could you tell us about yourself, your interests, and how you got connected to this work?

Dr. Thomas Workman:

You bet. My PhD is in health culture and health rhetoric and communication. And so, I’ve always been interested in the way in which we perceive of health and health care, and the way in which we intersect with that culturally. Which, of course, naturally led me to do patient and family engagement work, and actually the majority of work that I do. That work is try and connect and to even better understand and then connect patients and families into improvement of health care

Ultimately, the goal here is what we all call, patient-centered care. But it’s even more than that. Patient-centered care for me is about care that keeps the patient in the center point. Everything that we do is in order to help the patient achieve their health outcomes. Patient engagement, though, is also about partnership. And so, how we can help patients partner with their health care provider. Again, for their own outcomes, as well as for others.

This is a relatively new field, so we’ve all been learning together. I can’t say that there was a class in this in the academy, so this is all new. It’s been fascinating to try and learn and understand. I think where we are now in the field is understanding the importance of diversity. And so, a patient is not a patient, is not a patient. A family caregiver is not a family caregiver, is not a family caregiver.

Because we have the intersection of all kinds of cultures, races, ethnicities that change. And this is why the cultural training for me has been so important. Because to understand how I interact with authority from a cultural position, means it’s not all the same. We’re used to White American middle class consumers who know how to speak up for themselves sort of, kind of. That’s different than, I think, someone who is coming from a culture where you don’t speak up to authority. It’s dangerous to speak up to authority, to even ask questions.

Susan Cosgrove:

I think that’s such an important consideration. Now you mentioned around White middle class values or that dominate culture. I think what we see is that, that’s where a lot of physicians and health care practitioners come from also, so could you speak a little bit to diversity? Not just on the patient side, but diversity in provider or clinician or physician perspective and how that can inform patient engagement and patient-centeredness, and care.

Dr. Thomas Workman:

Well, that’s where it really matters. Again, it’s very hard to tell a patient that diversity matters when they don’t see themselves reflected in their caregivers. So if they don’t see in their care providers a similar cultural representation, it’s very hard to ever believe or trust. And so, this effort is necessary to make sure we’ve got a diverse health care workforce, a diverse clinical workforce in order to help meet those needs.

Now, does that mean that a Hispanic patient must always be seen by Hispanic doctor, or nurse, or nurse practitioner? No. But it does mean that we should have the same reflection of the community that the health care service is serving. RThere should be a mirror reflection. This is really important when we create patient/family advisory councils, because we have the same issue. The retired White middle class individual is the easiest candidate to find to be a patient/family advisor. But then, you have a very homogenous group and you’re not reflecting your community.

Susan Cosgrove:

Yeah. I think that’s a great point that you brought up about patient/family advisors and representation. I think, certainly, that reflects some of our experience with PENNJ-SOS as well.

So, health literacy and patient engagement has always been a central part of this program. And when we were thinking about patient engagement, we wanted to do exactly that. We wanted to recruit a group of patient and family advisors that could really help us with this work, that could provide feedback on education materials, could speak about their own experiences, particularly when it comes to pain management, post-surgical opioid use, things like that.

I think we were very lucky to be able to partner with a local academic health system with Temple University, who has a very, very robust patient and family advisory council system, where they actually have multiple PFACs that serve the different service lines at the hospital.

When we were in the room with those patients, the feedback that we got from them on materials, it was things that I never even thought of and was so valuable, and really informed the extent to which we were able to produce materials that we were proud of, that we felt were health literate, that we felt really spoke to different patient populations.

When you speak about things like community, and you speak about things like engagement and partnership, that’s what comes to mind. For me is how to engage in that way where you are into a partnership, you are working together, you’re not just going to the community when you need something but they’re an integral part of the way that you are developing materials and delivering health care and things like that. It sounds like that aligns with your recommendations around that as well.

Dr. Thomas Workman:

Even concepts like pain are interpreted different culturally. They’re interpreted differently ethnically.

The other thing I think that’s always interesting and I’m sure you’re dealing with this quite a bit, is language translation. I think we’ve all learned very valuable lessons about how we have to translate into other languages using native speakers and not trying to do a straight English to Mandarin or English to Spanish or English to whatever the language is translation, because that simply doesn’t work.

Susan Cosgrove:

Yeah, it’s interesting that you brought that up because we are just at the end of the process of having our written materials translated from English to Spanish. There were a lot of considerations that went into this. I think what we’ve observed, what sometimes happens is that sometimes when materials are translated the funding goes to the actual translation of the words and not to the design budget.

Dr. Thomas Workman:

Right.

Susan Cosgrove:

So you end up with this really, really nice well-designed English material, and the Spanish language material that’s like a word doc that’s printed out.

That I think is sending a message about equity, about who the care is for, about who the materials are for. For this program, we really were committed to making sure that those materials looked and felt the same.

And, we found ourselves in a position where, even when we were doing the translation, we had to make some choices because when you translate from English to Spanish, you’re talking about a higher volume of words. We have 1.5 times the words and we’re trying to make sure that we have the white space and that we’re keeping the font size and the spacing the same. I think quickly you realize that it’s not just this one to one and it takes a lot of different … There’s a lot of different decision points along the continuum where you have to actively choose equity to address the needs of a diverse patient population, particularly patients that don’t speak English as their first language.

Dr. Thomas Workman:

Boy, Susan, been there, done that. I mean, I’ve really dealt with that challenge of this is now three pages longer. But you know what? So here’s an interesting contrast, I think, despite all of the differences that come across when we work with diverse populations, there’s a similarity. I think we’re all trying to understand what that core is.

So human beings have some very basic concerns around their health care. They really want to know, “Am I going to be okay?” And being okay may mean different things to different groups, certainly. All right. Some groups it’s just, “Am I okay to work?” Versus, “Am I okay to live a comfortable quality of life?” But even things like, “Do I matter? Am I important to the people who are interacting with me? Do you care about me? Do you care what happens to me?” And so, when we do see differences in budgeted materials that it says to certain groups, “No, you really don’t care about me. You really don’t care that I get this information or that I understand it, or that it matters to me.”

This issue of having live translators when we do the work in hospitals or in any kind of care setting is equally important. “Do you have someone who’s going to actually communicate for me and with me? Because that says to me whether you care about me, you care what happens to me, or I’m just another number.”

Susan Cosgrove:

Yeah. I love the centering of this idea of care. This idea of all patients being, having this common experience of wanting to know that they are okay. I think we see that emerging in every health care setting. But I see how that’s particularly relevant in surgical settings, where you’re literally putting your life in your physician’s hands.

As you mentioned earlier, different concepts of pain and different concepts of being okay, those all, I think, come into play here. Could you maybe speak a little bit more to how some of those concepts play out in surgical encounters where patients are really at their most vulnerable?

Dr. Thomas Workman:

Yeah, I’m happy to. In fact, we spent a lot of time thinking about this. One of the things important to say right away, and I learned this from doing work around end of life, is that many of the conversations that need to be had in the clinical setting, it’s too late to have in the clinical setting. It’s not the appropriate place. We need to have those conversations way before, and we need to have them with a whole number of other people.

So like end of life, and obviously all of the issues connected to that, pain is very similar. What is pain tolerance for me? What is acceptable for pain tolerance? What is not acceptable as pain tolerance? These are decisions I have to make way before we start talking about my opioid use.  And certainly, way before I’m experiencing pain. We’ve caught on well enough now, to know we need to have these conversations up front about pain before surgery. And we need to say, “Here’s the kind of pain you’re going to experience, here are some of the options, and here are some of the potential pitfalls that could easily happen in trying to treat your pain.”

But prior to any of that conversation being effective, we need to have an opportunity for the patient to talk about pain with the people that matter to them so that they have a formed philosophy, if you will, or precognition about what does pain mean to me and what’s important to me. I mean, we forget that individuals all have very different pain thresholds. And we also forget that much of that is socialized for us. So we are bombarded with messages that say, “Don’t tolerate pain. Don’t tolerate it at all. Do something. Take a pill. Do something to get rid of that pain. Because if you have pain, something’s wrong, something’s bad.” That’s not necessarily always the best pain management.

We don’t do well enough in our culture. Really have opportunities for people to have thoughtful conversations about what pain means to them and what’s important to them in pain, and what even cultural and ethnic influences are around their experience with pain. And it’s stop and really think through my opinions about that before I walk in and we make a plan about how I’m going to manage my pain in this specific situation.

Susan Cosgrove:

So, I think what I’m hearing from you is that the expectation-setting is important, but even taking a step back further, patients need to be able to think about and discern what they’re willing to tolerate or what they’re priorities are. That transparency’s really important on all sides. I see how these conversations are so difficult to have because they might be something that people aren’t thinking about ahead of time. A patient could already be in pain even before you add surgical pain on top of that.

And, I think there’s probably a sense from the clinician’s side as well, that you want to set expectations appropriately, but you also want to reassure. You don’t want to add to fear for the patient. So, do you have any recommendations for how we can make these conversations easier? How we can create an environment where these conversations can start early and can happen openly and very transparently and evolve as expectations and priorities change and evolve?

Dr. Thomas Workman:

Well, that partnership with patients starts early, and it needs to start early.  As a patient comes in and we start to have the conversation about what’s going to happen in a surgical procedure, which we don’t always have by the way, we don’t always prepare our patient fully for surgery, that might be step one, is to have the conversation about pain and to ask the question.  It’s so important for a clinician of the patient, “What are your views about pain? What’s your tolerance level for pain? What does pain mean to you? What is too much pain? What is not enough? What’s the typical way that you manage other pain?”  And how do you address that? And then, have the open conversation about, “Well, what will happen then with this pain and the way we’re going to treat this pain.”

The second thing that’s really important is change the expectations that all pain is treated with opioids. That has been, I think, one of the biggest changes that opioid stewardship has created for us. But most patients still don’t know that. We don’t have narratives. We’re not seeing it across our culture so we’re not hearing the story about the patient who meditated their way to pain relief. We’re not hearing about the patient who used nonnarcotic medications to address their pain. And yet, these things are really critical. They’re not going to be believed if I don’t see it anywhere else in culture.

You’ve probably heard a success, again I go to end of life because it’s such a good parallel where people have now, it’s pretty normal where you hear, “Have you had that conversation with your parents yet? Have you talked about end of life with your parents?” Well, that’s really spread across culture. Well, that’s from some really hard work from some wonderful organizations that seeded those conversations. And we need something very similar around pain to help seed those conversations.

We do have to deal with the actual clinical setting, itself. And so, helping patients express pain is the second part of that. And of course, as you know, we’ve had as a standard for years, the 1-10 scale, the smiley face to the frown. That has been very effective, but it may not be effective enough.

In other words, helping people give shape and form to their pain is very effective in helping find the right treatment. Whether this is a sharp, stabbing pain, where this is a dull ache. Really helping people to have the language. Not all pain is the same, and so how can we have a patient express it better and talk about it better.

Finally there is this issue about expectation. What can I expect? Can I expect to be pain free? Boy this is … I did a lot of work around rotator cuff repair and some of the research around that to help educate patients. And here’s a toughy, because patients who go get rotator cuff surgery will be in pain probably for another good two years. Patients who don’t get rotator cuff surgery will be in pain for at least a good two years. Patients who just do physical therapy will be in pain. You’re going to be in pain.

What level of pain, how you’re going to relieve that pain, but to sit with a patient and say, “The next two years, you’re going to experience a lot of pain. And let’s talk through how you can manage that pain. How do you manage it physically? How do you manage it psychologically?” And those things are equally important.

And so, our doing a pain plan and really thinking longer term, “So I’m going to send you home, and you’re going to have pain at home. The pain’s going to start to feel different over time, but the expectation that I want to make sure you’re aware of is that pain’s going to be there for a few months. You’re going to feel it every time you get up. You’re going to feel it when you move in certain ways.” And then, we help prepare people, get them ready to think in those terms, so that they’re not constantly surprised when they experience pain.

Susan Cosgrove:

I think you bring up another interesting point which is that if you’re talking about surgeries that are necessary but elective, pain is actually part of that decision making process.

And understanding what that experience is going to be like with the surgery or without, and the example that you just gave, is really important for patients to understand, “Do I want to try physical therapy first? Am I ready to proceed right to surgery? Can I endure what that will take?” So to me, that points again to this importance of having these conversations often and early.

Dr. Thomas Workman:

And equally important in trauma. That once we’re past the traumatic moment, that we had that conversation about pain. And to have to battle with caregivers who are assuming that you’re drug seeking. To have that real challenge is because we haven’t even had a conversation between patients and clinicians.

How could we find a mutual understanding? How can we set some agreements? How can we protect against people who are really drug seeking?” Because this is an addictive substance, and so you will always have drug seekers. “How do we manage that?” And again, let’s bring the patient population in to help solve the problem rather than see them as the problem.

Susan Cosgrove:

So, I want to pivot a little bit. When we think about surgical stewardship, we have health systems, hospitals, clinicians—they have a set of goals.

For example, they want to reduce the number of opioid prescriptions. Or they want to get patients up and moving out of their beds within 24 hours after surgery. These different clinical markers of success or clinical markers that are related to quality or safety. I think the question I want to ask is how do you align those system level, or organizational or quality goals with a patient-centered approach where they are still in service of the patient’s needs? Is it possible to do that and to balance all of those competing priorities at once?

Dr. Thomas Workman:

Sure it is. So, getting you up and moving, though I have a goal and am documenting when that occurred, it means something different for you. And how can I then translate that into what it means for your life? The quicker we get you up and moving, the faster we’ll get to your recovery.  It really doesn’t help you to stay in bed. It doesn’t matter that I have to report it, that I have goals. That’s all backstage. That’s not important. But it’s easy for us to get lost in our own processes and procedures and forget that, that’s meaningless to the other party.

And so are constantly thinking, I think the thing that we spend more time doing with clinicians and with staff is helping them think about translation. What does this mean to someone else? I have my terminology, and again, I use it all day, so it’s easy to fall into the habit. But to stop and say, “What does that mean to you? And how can I present it to you in a way that’s meaningful?”

And really the translation for patients is quite simple because it’s always practical. It’s always based on, “What will you now help me do?” Remember, those key questions we have as human beings, “Am I going to be okay?” And, “Will you care for me?” So, if I think you’re getting me out of bed because you really like watching people have pain and difficulty, really like … You’re a little sadistic. Then, of course, I’m going to be resistant. If I think it’s because you care about me and you want me to get better faster, then I’m far more able to take that in and to cooperate with that and to partner with you. Yeah. I get it. I can’t get you out of bed. This is the partnership. This is your contribution. But I’m going to try to get you out of bed really sooner than you think should happen, but here’s why I’m doing it. Here’s how it’s going to help you. Here’s how it’s going to get you okay.

Susan Cosgrove:

Before we go into the last question, Tom, I’ll pose to you also, anything else that you want to add or that we didn’t touch on in this area that you’d like to elaborate on that you already touched on?

Dr. Thomas Workman:

I’m really grateful that you’re exploring this. Because again, I think it’s very easy to focus on opioid stewardship from the clinical perspective and not from the patient perspective. And I do think they’re worlds apart. I think they have a different set of goals. I think they are concerned about a different set of things.

I can’t do anything about the number of overdoses in America. I can do something about my overdose. I can do something about my dependency and I can think about those things for me. And so, that ultimate translation, I think, is really important one. That though we’re thinking about a population, patients always just thinking about themselves, caregivers are just thinking about themselves but in a different context.  “About how do I help this person I love who is in great pain?” There’s nothing worse than watching someone you love in great pain. That’s a real challenge. And we certainly see opioid demand sometimes stronger from family caregivers than they see it from the patient, because it’s so hard to watch someone be in pain.

I just want to say how grateful I am and how important it is that we carry that conversation, that we keep bringing the patient back into the conversation, we keep thinking about how does the patient hear this, how does the patient experience this, and what does this mean for a patient.

Susan Cosgrove:

I think you really summarized that beautifully in thinking about that tension between the goals of some of these programs, which are often population-based, and so we can sometimes miss that individual patient, that suffering, that need to really again, make someone feel cared for. Reassure them that they’re going to be okay. And that, I think, is maybe even more difficult when you’re talking about a substance that has the potential to do harm in opioids.

I think we’ve even heard from patients that are scared to take them when they might be appropriate because they’ve heard such horrible things. I don’t see any other way other than building that partnership, taking that patient-centered approach to make sure that each patient gets what they need in terms of pain management with or without narcotics.

Dr. Thomas Workman:

But you know, Susan, you raise the opposite of that, that’s so important to say too. Yes, it’s dangerous. Yes, it has real potential for harm. It’s also a miracle drug. It has also soothed a lot of pain for a lot of people. It, like everything else, can be misused and overused. So, I think it is important that we help patients get a healthy perspective about opioids and to understand when it is a danger and when it is not.

Again, we just need that conversation. If I could boil everything in our conversation down, it’s: have the talk. We’ve got to get clinicians and patients and family caregivers talking about pain, talking about pain management, talking about the wide range of options we have to address our pain. And, seeing the value in opioids because there’s a time when an opioid is the absolutely perfect substance to use. When well-controlled, when we’ve thought through it. So even setting those, that’s why I love a pain plan.

And so, our thinking about this in stages, our thinking about this as a progressive issue, because pain lessens over time as we recover, and there are probably some things that can exacerbate the pain and some things that can lessen the pain just in our general lifestyle in the way that we’re living or eating or sleeping or all those other things.

And so, having the conversation, I think, is the most important thing in what has to happen.

Susan Cosgrove:

You mentioned earlier in our conversation that patient engagement and patient partnership is still a relatively new concept. And so, I want to end by asking you what you hope to see in the future, or where you would like to see this field go?

Dr. Thomas Workman:

I would love to see us achieve patient-centered care. More than anything else, this would be a dream come true. I mean that consistently. There’s some places that really have captured and do a great job in patient-centered care.

We’re far better when we’re cooperative and collaborative. I feel like we’re learning that lesson. But in the future, for me, that’s what it looks like. We recognize each other as viable, equal partners. And we see the value that patients see the great value that a clinician brings, and with their knowledge of science and with their knowledge of the body brings. And when we partner that with the knowledge that I have about myself, my culture and my beliefs, my behaviors, my impulses, all of that sort of stuff, then together we’ve got a great team and we can conquer all kinds of things.

So the future for me is that we move to that kind of collaboration as standard operating procedure. There’s a lot of ego that has to get out of the way. But for the first step is I think that we put down our dukes, and we say, “Rather than pushing against, we’re going to have to start and say what could we do together?”

Susan Cosgrove:

I think that’s the perfect note to end our conversation on. Thank you so much for taking the time to be with us today, and to share your work around patient engagement and partnership.

Dr. Thomas Workman:

My honor, my privilege. Really grateful to be able to be with you today. So grateful to be able to help, and thank you!

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