Managing pain with Joshua A. Jones, MD, MA
Living Beyond Breast Cancer’s 17th annual Conference on Metastatic Breast Cancer was held April 28-30, 2023 as a hybrid conference in Philadelphia, PA in-person and virtually via our online conference platform. In this session, Joshua A. Jones, MD, MA shares how to understand different types of pain, and details about medicines and methods to manage pain while preserving your quality of life. Learn how to include pain management in your overall treatment plan, including ways to communicate with your doctor about concerns and finding resources and pain specialists.
Joshua A. Jones, MD, MA (00:00):
Thank you so much for having me. It is really a pleasure to be here with everyone. I have known about and been involved with Living Beyond Breast Cancer for a while. It is such an amazing organization, and I am really honored to be able to, to be here with you today.
Today’s topic, we’re going to spend some time thinking about pain management in metastatic breast cancer. And my hope is that we will have lots of time for questions, so please put them in as I’m going through my slides and anything I can do, I would love to be able to think together and make this as much of a conversation as possible.
The outline for the next few minutes: We’re going to spend some time thinking about why talk about pain, some basics of the way that I think about pain, different ways of thinking about pain management and palliative care. And then, again, we will have a fair amount of time for questions at the end.
Many patients that I see tell me that they think talking about pain is taboo and they really don’t want to spend time talking about their pain. And when I ask them about that, there are lots and lots of reasons. There are concerns, certainly fears about addiction, fears about medications and side effects, wanting to treat pain naturally. But there are also some more subtle pieces about, I’m worried, does this mean that I have progression and fears about what the pain actually means. Or when we’re talking with our oncologist, maybe it feels like there are just more important things to talk about. Or I can just deal with it. I’ve been managing this for a long time.
My experience is that there are often fears about talking about pain, and I wanted to spend today thinking about why it is important to talk about it and how we can do that so that we can think about things together.
I wanted to start with this because this is really one of the most common questions that I get is, what about getting addicted? And is this something that I need to be worried about if I’m using, particularly opioids? We all hear all the time about the opioid crisis, and I think it is an important conversation to have with patient, provider, family, everybody together. I’ve been doing this a long time. My experience is the risk of addiction is low when we are thinking about it and talking about it together. And there are ways of managing that and thinking about it, so that we can get good pain control even when there are worries, even when there’s a history of addiction as well.
With these fears, with these worries, why is it so important to talk about pain? And there’s lots of data that shows that talking about pain and really having a good pain plan optimizes a lot of things. Quality of life. It improves our ability to live in the moment, to be able to do the things that we want to do, to be able to function in the way that we want to function. It improves relationships with others. We know that pain has significant impact on mood. It has impact on interpersonal relationships with the people really close to us and even beyond.
And we also know that there are many studies that show when we have optimal symptom and pain control, it helps people not only to feel better and have better quality of life, but also to live longer. So, lots of really good reasons that we should be talking openly about symptoms and about pain in particular.
What is pain? And I’ve taken from a variety of different professional references, the NCCN and the International Society for the Study of Pain, define it as an unpleasant sensory and emotional experience associated with or resembling that associated with actual or potential tissue damage. And I think part of the key here is that, again, this is not just the physical component, but there are many other factors that pain impacts. Emotional functioning, psychological functioning, spiritual well-being. And thinking about all of them together becomes really, really important. As we think about this, a question that often comes up, and I think I already saw somebody ask this question, was, well, what is the cause of the pain? And I spend a lot of my time thinking with patients and families and other providers about trying to understand exactly this question.
Sometimes pain can be from cancer, from the primary cancer site, from metastases, often bone metastases or involvement of nerves. Sometimes pain can be from treatment and side effects from surgery, from radiation, from chemotherapy. Sometimes there can be chronic pain. I have plenty of patients who’ve had chronic back pain, who have had constipation, have other chronic pains that may not be directly related to their cancer.
And I think I saw a question, how do we tell if pain is related to treatment or to underlying arthritis? And I think sometimes it becomes really important to differentiate how much of this is related to cancer versus how much is something else. Other times we want to think about, well, regardless of the etiology, this is the approach that we want to take to optimize functioning, optimize quality of life, and think about that together.
A big part of this is really correlating the symptoms and what we’re going to talk about in a moment, the ways that we classify pain with scans and with side effects and putting it all together so that we can have that conversation and come up with a holistic approach to how we think about managing the pain.
Theoretically, every time we are thinking with patients and families, we should be asking about pain. And it should be a standard part of every interaction with clinicians. Why? Because if we aren’t actively asking about it and thinking about it, then we can miss things together.
There are some specific ways that we should be thinking about classifying pain. You’ll often hear about the numerical rating scale. On a scale of zero to 10, zero being no pain, 10 the worst that you can imagine, where is that pain? Understanding what does it feel like? Is it sharp? Is it aching? Is it stabbing? Is it burning? The timing, the modifying factors. Does resting help? Does activity and walking help? And what is the impact on function? And thinking about these things together can help us to understand, is this pain from cancer? Is this pain from treatments and side effects of treatment? And what does that look like?
I’ve had plenty of patients who described this is the my chronic back pain that I’ve had for 20 years. And, and thinking about it, well, now it feels just a little bit different. So really having those conversations to understand how are things changing over time can help us to think not only about where the pain is coming from, but also how do we best approach it together.
I also want to spend a moment talking about meanings and pain. Because part of this hesitation about talking about pain also gets to what pain can mean to us. Because when we are having pain, and it is constant pain, it is ongoing pain, it can impact so many things in our lives. It can impact physical functioning, it can impact our roles as a partner, as a family member, as a mother, as a daughter, as a friend, it can impact so many things.
And it’s also complicated because it can be a constant reminder when we’re in pain all the time. It can be a constant reminder of what is going on and what we are dealing with.
Thinking about how do we approach that and how do we approach not only the physical aspect of the pain, but all of these other pieces — the emotional impact, the spiritual impact — becomes really, really important. And I just want to say here, and I will say this, I think many times: Support is critical. That is with patients and families and with their people and their support teams outside of the health system, but also the support teams within the health system — the nurses and the nurse practitioners and physician assistants and physicians, everybody together, we want to be thinking about how do we all think about pain and pain management together?
When I think about the NCCN, the National Comprehensive Cancer Network, and what is the sort of general approach to pain that we should be thinking about, it is not just about analgesia. And sometimes getting that pain score from seven down to zero isn’t possible, so it’s not just about that number and that physical feeling of pain.
We want to be thinking about what is an acceptable level of pain? How do we help to make sure that we’re helping people with the activities, with the roles, with the things that they want to do, the adverse effects, the side effects — the pain medicines, most of them will have side effects. So how do we manage those?
How do we make sure that we’re thinking together this apparent behavior from NCCN? We want to be thinking openly and together about what is the potential for addiction? And how do we work on that as a team so that everybody can feel comfortable and confident in the approach that we’re taking?
How do we think about affect? How do we think about the impact on mood? And put all of these pieces together. So this is not just about physical pain scores that numerical rating scale, but how do we put it together to take care of the person as a whole? When I talk about this team approach and thinking about all of these different components, I want to make sure that we’re thinking about how do we do this as a team?
Talking about palliative care becomes critical here. So CAPC, the Center for the Advancement of Palliative Care has a definition that I really like. Palliative care is specialized medical care for people living with a serious illness focused on providing relief from the symptoms and stress of illness. And it’s to improve quality of life for both patient and family. And this is specially-trained team — physicians, nurses, other specialists, social workers, chaplains — it’s a big group to provide that extra layer of support. And it’s really helpful at any age, any stage. It’s not dependent on prognosis.
And I put this in here because I’ve had many patients tell me when I’ve talked about, maybe it’s worth us talking with a palliative care team saying, “Well, I’m not ready for palliative care. I’m worried about what that means.” And I wanted to stress that this is really helpful at any point through the treatment course, throughout the diagnosis when we’re dealing with this type of serious illness, to think about symptom management and to think about these stressors and managing these stressors together.
The heart of our topic: How do we think about pain management? I divide this really into four different categories, and we’ll talk about each of these separately. We can go into as much or as little detail with these as we want as we’re going through Q&A.
The first that I want to talk about is the non-pharmacologic interventions. This is — and we’ll go through each of these in more detail — but things like physical therapy and exercise and heat and ice and acupuncture, thinking about those pieces. The second is what we call adjuvants. Medicines that can be helpful for pain that weren’t necessarily created to help with pain, but can be very, very effective. These includes things like Tylenol, acetaminophen, non-steroidal anti-inflammatories, things like Advil, Motrin, things like that.
We’ll spend a couple minutes talking about opioids, and then I will spend a couple of minutes talking about other interventions. Chemotherapy, hormone therapy, immunotherapy. There are treatments that treat the cancer that can be helpful. Radiation treatments, that’s what I spend most of my time thinking about is how does radiation help with pain and other symptoms. And then surgery and other interventions. We’ll talk about each of those.
The non-pharmacologic interventions, we really can divide into three specific categories. One is cognitive-based modalities. These, depending on the scenario, can be incredibly helpful. Things like cognitive behavioral therapy, mindfulness-based stress reduction have been shown in big studies to have significant impact on pain. Things like hypnosis, biofeedback, relaxation training. There are lots of different ways that we can think about using interventions that can have significant impact on pain.
Physical modalities are a little bit different. Here we’re going to be thinking about exercise, therapeutic supports — using walkers, using braces, using other things like that — massage, yoga, heat, ice, acupuncture, acupressure. Many of these have been shown in all different scenarios to help with pain. Scrambler therapy, TENS units. There are other ways that we can think about using other interventions that are physical, non-invasive modalities that can help with pain as well.
And finally, nutrition sometimes can really help. Again, it’s going to depend on what the etiology of the pain is, but sometimes if we’re dealing, struggling with constipation, severe pain related to constipation, there are dietary interventions. There are, there are things that can help with neuropathy. There, there are a variety of different ways that we can think about nutrition interventions that, that might be helpful.
Adjuvants. Here we are talking about things like acetaminophen, the non-steroidals, ibuprofen, naproxen, things like that. Talking about steroids, which sometimes can work magic. Topical agents, particularly when we’re talking about skin irritation, skin burns, infections, can be incredibly helpful.
And then there are the neuropathic agents. When we talk about classifying pain, I didn’t go through neuropathic versus no susceptive pain, but neuropathic pain is usually when there’s nerve injury or nerve irritation. And that type of pain usually responds to different types of medicines. Things like gabapentin, pregabalin, Neurontin, or Lyrica. There’s some antidepressants. There are a variety of different medicines that can be used to help with neuropathic pain as well.
I skipped opioids for just a moment, we’ll come back to that in a second. I wanted to talk about these other techniques.
One thing that we need to be thinking about is if nothing else is working, should we be thinking about interventional pain techniques, nerve blocks, intrathecal pumps? Again, we talked about systemic therapies, hormone therapy, targeted therapies. These are things that we’re going to be thinking about with the oncology team, with the palliative care team. Everybody thinking together about what’s going to be most helpful here.
Surgery we usually reserve, again, for if there are challenges that can’t be controlled in other ways. For example, if somebody has a fracture of a bone related to a bone metastasis, we can think about putting an intramedullary nail into the femur or the humerus, stabilizing the bones. Cement, if there are compression fractures where the bones in the spine collapse down. Thinking about interventional techniques, if there’s fluid in the lung around the lungs, fluid in the abdomen, are there ways that we can remove the fluid? There are lots of different interventional techniques that sometimes are going to be incredibly helpful as we’re thinking together about the optimal approach to pain.
And I just wanted to spend one slide talking about radiotherapy, because again, this is what I spend my time doing. We want to think about, the goal of radiation is going to be rapid, durable symptom relief; minimizing side effects of radiation treatments, because those can be significant too; and doing that in a way that matches where we’re at with treatment and goals and how we put everything together so that we’re not putting patients through treatments that are more aggressive, more intense than would be beneficial. And that we’re really doing everything to optimize the benefit.
There are ways of doing this with conventional, very simple techniques with radiation, where the treatment can be delivered just in a very short amount of time, just a couple of minutes. There are more complex techniques with stereotactic radiation, pinpoint radiation that allows us to give higher doses. We can often do this with one or multiple fractions. And this should be a conversation, again with the oncology team, with a radiation oncology team, about how do we balance these things to optimize benefit and minimize side effects. That’s always the balance.
Just a couple minutes talking about opioids, again. Why are we thinking about using opioids for management of pain? These have for years and years been a mainstay of treatment of cancer-related pain.
These are derivatives of the poppy plant and have impacts on the opioid receptor, which can help to dull or numb pain. And there are lots of different formulations. We’re not going to go through all of this. But they have benefits and drawbacks to each of them. So morphine and hydromorphone or oxycodone and hydrocodone are the most common short-acting opioids. They often come in long-acting versions as well, where it’s a specially-formulated, slow-release version that you take twice a day or can even be delivered, as in the case of fentanyl, with a patch that goes on the skin that can be delivered over several days.
The idea is we want to start with the lowest possible dose that can be taken as needed. And if we’re needing enough of that medicine, instead of having the ups and downs that go with taking lots of short-acting medicines, we will sometimes then add in that long-acting pain medicine. So instead of the pain going up and down to these significant peaks and valleys, we have a more steady coverage so that we get baseline pain relief. And you can take the long-acting pain medicine with a short-acting pain medicine. They act with different lengths of time. So often using both can be very, very effective.
Some special cases, fentanyl. Many people have heard about fentanyl in the context of the opioid epidemic. It’s a more powerful pain medicine. It’s not available as a pill form but can be put on the skin and absorbed through the skin as a patch. It can also be taken transmucosally. What does that mean? There are multiple different formulations, but it can be given in the inside of the cheek, under the tongue as a nasal spray. And the benefit of that is that it delivers a dose of opioid that has a very rapid onset because it gets absorbed directly into the bloodstream there. Some options related to fentanyl.
Methadone, which is often used in addiction medicine, and buprenorphine, which is often used in addiction medicine, are both naturally long-acting opioids, so you can take them a couple of times a day and get that long-lasting relief. Usually a palliative care team or a pain management team is going to be involved in prescribing methadone and buprenorphine simply because they are a little bit more complicated to prescribe than the other opioids.
Practical considerations, anytime we’re thinking about opioids, again with concerns about addiction, about what we call diversion, if somebody’s sharing medicines with somebody else. Many places, many providers, many clinics, will ask that a patient sign a contract that they’re only going to get the opioid pain medicine from one place. There should be lots of reviews about how to use these medications safely. Thinking about how do we manage constipation, how do we make sure that we’re staying ahead of that because that can be a limiting factor in the use of opioids. Thinking about having naloxone [Narcan] available. And this is something that honestly, over my career has changed, where now naloxone should be available to anybody who’s getting opioids in case there’s an accidental overdose. Patient, family, children, even pets, so that, that can be available to reverse the effects in case of an accidental overdose.
And again, this question about fears of addiction is something that should be discussed. These medicines can and absolutely are used safely, and can be incredibly effective, but it’s OK and I would even encourage people to talk openly about this question of fears of addiction.
One last point. I wanted to open up for questions in a moment, but I realized as I was going through this that I didn’t make any comment about medical marijuana. I just want to make a brief comment that the studies are OK, not great, about how effective medical marijuana can be. Certainly it’s something that I’m asked about quite frequently.
My experience is that it is something that some people get tremendous benefit from, some people get almost no benefit from. So it’s worth talking with your provider about what might be the benefits here, what might be the drawbacks, what might be the interactions, and that should always be a conversation about how do we think about this together so that we can come up with that optimal pain plan.
And I’m going to stop there so that we have some time for interaction and questions.
Catherine Ormerod MSS, MLSP (24:56):
Great. Thank you for that presentation. There’s lots to talk about. We have some questions.
I’m going to start with opioids because that is the last question, but it’s a good one.
Are opioids only used for severe pain? Or how do you approach the level of pain and opioids because they have such a risky profile?
Joshua A. Jones, MD, MA (25:22):
Yeah, so part of the reason that I described all of the different interventions is, and I didn’t include in the slides the idea of the WHO pain ladder, where we start at one level and then we escalate and we escalate. So that if we need different or newer approaches, we use those.
The question of when and how should we use opioids is a conversation that should happen between patients and providers together. There are times when opioids are actually not going to be as effective as some of these other pain medicines, right?
So I have patients, much of what I do is I take care of patients who have cancer that has spread to the bone and is causing pain in the bone. My experience is that often steroid medicines and non-steroidal anti-inflammatories and things like Advil and ibuprofen are often more effective at treating that pain than opioids.
The key is to come up with a personalized approach that tailors what we are treating with the medicines and the approaches that we are using. Usually we’re going to try these adjuvant medicines, things like Tylenol and NSAIDs and things of that nature first. And if that isn’t working, then we’ll often add in opioids. But it should be an ongoing discussion about when and how to add in opioids. I don’t know if that that answers the question, Cathy.
Catherine Ormerod MSS, MLSP (27:03):
I think it does, and it sort of gets to some of the other questions like, should you do those nonmedical, the more natural the acupuncture, massage, steroids, first before going into either radiotherapy or even the opioids. Could you expand on that a little?,
Joshua A. Jones, MD, MA (27:28):
Yeah. I think the question about when and how really depends not just on that pain score. So I have patients where they may have a pain of 7 out of 10, and they may be saying, look, I can function and so if we can try the Tylenol and the Advil, but if we can try physical therapy, if we can try acupuncture, if we can try these other things, I would like to try them. And it really gets to that question of how do we balance function and roles and those pieces of who we are with what we’re able to achieve. And so I’ve had people who’ve said, “Look, I don’t want to try opioids yet because I want to try x, y, and z first.” And there isn’t a magic pain threshold number where I would say this is where we need to get to opioids. It’s about how do we think about that bigger picture together?
For some people we’ll start opioids sooner and we’ll do it maybe at a pain score that might be a little bit lower, but it’s about how do we put it all together. And if we can’t function, if we’re not able to do the things that we want to do, that to me suggests we need to be escalating and thinking about other ways of approaching the pain.
Catherine Ormerod MSS, MLSP (29:08):
OK. I like that I like that approach.
Could you just speak to acupuncture? Not everyone is real familiar with acupuncture or understands how it might work. So could you speak to that?
Joshua A. Jones, MD, MA (29:26):
Yeah. Let me preface by saying I am not an acupuncturist. I am not a licensed acupuncturist. I do not acupressure. I have worked with a number of colleagues who do this, and it is something that I actually really believe in. It is a different framework of thinking about the body, of thinking about pain. It is a fundamentally different mindset.
With that said, it has been shown in different studies to be effective for a lot of different pain syndromes. Often related to side effects of medications, to some of the arthralgias, the joint aches and pains, the hot flashes. It’s been helpful in lots and lots of different areas.
One of the challenges: sometimes it’s covered by insurance, sometimes it’s not. Much more recently I’ve found that it is, so that that has been encouraging. But it’s also about finding a provider and a fit, as with anything in the care that we’re getting, it’s about finding somebody that you trust in, somebody that you can work with. And then thinking about, what does the timeframe look like? When are we going to see the benefit?
This again, Cathy, to your point about when do we start opioids. If somebody’s starting in 10 out of 10 pain and they’re in agony all the time, yes, it’s worth considering acupuncture, acupressure. But we also want to be thinking about that in conjunction with other modalities.
I think it’s a question of how do we fit this into that broader context.
The other question that I would just add is a question of availability. Acupuncture is wonderful when it is available, and for some people it’s very, very effective, but how does that fit in terms of how far do you need to go, and is it available at the cancer center. What do we have to do to make that happen?
Catherine Ormerod MSS, MLSP (31:50):
Yeah, that’s helpful.
A lot of what you’re talking about is really about lots of conversations, and I know many people really feel that power imbalance in their medical treatment, particularly with metastatic breast cancer where the stakes are so high, and issues of diversity and healthcare disparities feed into that.
I’m wondering, what do you tell to your patients, or how do you build trust and get the information you need so you can you make these decisions with the patients? Because that’s essentially what I’m hearing. It’s a, a two-way street here, but some people are very intimidated.
Joshua A. Jones, MD, MA (32:42):
Which makes so much sense to me and it is something that I see all the time. There are lots of worries. We talked about some of them at the beginning. Fears of what does this mean, and is it okay for me to bring this up. Is that going to take away time where we could have otherwise been talking about the next treatment for my cancer? And what does that look like?
I would encourage everybody to make this a topic that we routinely discuss. It is something that I think is worth checking in about every time. And look, once we’ve had some initial conversations, it becomes much, much easier to then say, “Hey, pain’s the same as last time,” or “Pain’s so much better.” It becomes a shorter conversation once we’ve had that initial discussion.
Standard of care suggests that providers should be asking patients about pain and about symptoms at every visit. I would empower people to say at the beginning of the visit, “Hey, something that’s been on my mind, I’ve been having some pain, I’ve been having this symptom. Is it okay if we talk about that?”
And the other piece, just to mention again, is that if it feels like visits with the oncology team are too full and there isn’t as much space for that, there are palliative care teams, there are other resources, other supports for us to be able to think about that.
Let me say one other thing, thinking about this as a team approach, I would also encourage everyone to think about how do they find their advocates. Sometimes infusion nurses are the most amazing advocates. Sometimes it’s the MA who’s bringing somebody into a room and having those conversations. It doesn’t take the place of a conversation with a physician or a physician assistant or nurse practitioner. But sometimes that can help to advocate for getting the support that you need.
So bring it up and if you’re not getting the responses that you need it’s worth continuing to push that.
Catherine Ormerod MSS, MLSP (35:26):
Yeah. That’s a great point about speaking to the nurses, social workers perhaps, and also other advocates.
We have a helpline where we’ll help people frame their question and figure out what is it they want to say and how can they build up the courage to ask? So we have resources and many of our sister and brother organizations do as well.
One of the issues about the risk for addiction. Earlier in the presentation you said even if people have a history of addiction, you have an approach to prescribe opioids and the talking about it. Addiction is not often talked about. So I’m wondering if you could tell say a little bit more about how that works and how you counsel people who certainly don’t want to revisit an addiction if they’ve already had one.
Joshua A. Jones, MD, MA (36:30):
Yeah. It is certainly more complicated to manage pain for somebody who has a history of addiction. There’s no question about that. And that’s where I still work with some of my colleagues — and again, with palliative care, we spend lots of time thinking about how do we balance the risks related to the addiction and the risks of relapse versus making sure that we’re optimizing pain. What I would say more than anything else is that there are resources available. That there isn’t a one-size-fits-all plan for “This is the right way to do it.”
Are there medicines like buprenorphine and methadone and other medicines that can be available? Absolutely. Is there only one way to do this? No.
Part of that conversation is about discussing, “Hey, this is part of my history. This is part of who I am. This is part of the experience that I have had.” And let’s think about it together so that we can do all of those things that we talked about at the beginning, improve pain, improve quality of life, improve function, do all of those things, but also decrease that risk and decrease the worry for everyone to the best way that we can. I think more than anything else, this is where that discussion of fears and really being open and saying, “Hey, what other resources are available?” So that we can think about it together.
Catherine Ormerod MSS, MLSP (38:20):
Great. Thank you. That’s very helpful. A question. What goes into the decision to use radiation for pain? At what point is it offered and why might it not be offered?
Joshua A. Jones, MD, MA (38:40):
So let me talk a little bit about my approach, which may differ from other people’s approach.
The way that I usually think about it is if there is a single area or a couple of areas that are causing pain — so one or two, maybe three spots, that are causing pain where everything else is doing well — then it’s worth thinking about, why is that one area, why are those few areas, causing pain? And if the thought is that there is an area where the cancer is growing or in the bone or wherever it is that that is leading to that pain, that it’s worth a discussion of: Might radiation be helpful? What might the side effects be? And what is the impact going to be on systemic therapy? Because it is not a straightforward, well, we should just radiate everything, everywhere, always. But rather, how much do we think radiation is likely to help? And how do we balance that with the side effects?
There’s really good data that shorter courses often have fewer side effects, and so it’s reasonable to ask a question, could we do this faster? Is one fraction of radiation, one treatment of radiation, one dose, is that going to be sufficient? And thinking about that together.
When and why might radiation not be offered? If I’m treating for example, I’ve had patients who have cancer that spread all up and down the spine all the way up and down the back. If I try to treat that whole area, the side effects the swelling from the exposure of the esophagus, the nausea, the vomiting, the diarrhea from exposure of the bowel, and even the impact on blood counts in future chemotherapy can be really significant. It’s a balancing question.
But the usual approach that I think about is that if we have an area or a couple areas where the pain is escalating, and we’re thinking about, hey, is it time for opioids? Is it time for acupuncture, acupressure? It’s worth asking the question, might it be reasonable to think about radiation here?
The only two other times that I would say it becomes more important to think about radiation is if we’re starting to see cancer that’s pinching nerves and losing function. For example, if it’s pinching the spinal cord, causing spinal cord compression, and we want to preserve function, that becomes 1) more urgent and 2) a more compelling reason to say it’s probably worth doing radiation.
Catherine Ormerod MSS, MLSP (41:36):
OK. That’s really helpful.
Along with the radiation, someone who’s very active physically and has had radiation to her spine, wants to know when she can get back to doing a lot of the physical things she loves. In this case, roller skating, cliff jumping, roller coasters. Obviously she doesn’t want to risk fractures, et cetera, but I think the sentiment is to get back to some of those things you love and that’s part of your opening.
Joshua A. Jones, MD, MA (42:11):
Yeah. So, so one of the things that we’ve found at Penn is that it’s really important to have a multidisciplinary, interdisciplinary approach to thinking about areas, particularly in the spine, but also in the long bones. Working with spine surgeons, working with orthopedic surgeons to understand what is the stability of the bone. Because the last thing that any of us want to do is risk sort of pushing things and becoming more active, and then having an even worse problem because we either move too quickly or we were imprudent in the way that we approach things.
There are validated ways in the literature to understand what fracture risk is in the spine, in the long bones, in various different areas. So the question becomes how do we think about putting those pieces together as a team with patient and family being obviously critical pieces to that team, but then thinking again with the radiation oncologist, with a medical oncologist, with a palliative care doctor, with the interventional pain team, with surgeons, with everybody together about what is that risk?
And is it doable? I remember a woman that I treated, 10 years or so ago who came in, had such severe back pain from metastases in the spine that we did radiation. We were able to do just one fraction of radiation, and her big thing was she wanted to get back to playing golf.
And we treated her on Thursday and she went and she played nine holes of golf on Sunday. It’s the fastest response to radiation I’ve ever seen — usually it takes a little longer than that — and called me on Monday and said, “Josh, I am so stiff.” And again, it’s a matter of thinking about things together, but she played golf for a long time after that. So there’s risk, but as we think together there ways of approaching that and thinking about how do we balance getting back to functioning and living and doing the things that we want to do with what the risks are.
Catherine Ormerod MSS, MLSP (44:39):
Yeah. Sort of a subtext, we’re talking a lot about physical pain, although as you’ve talked a little bit about it, it’s really connected to your mental health. I’m wondering how you work with both sides of that pain equation, emotional pain as well as the physical pain.
Joshua A. Jones, MD, MA (45:07):
I 100 percent agree with that each impacts the other. And there’s really good connection that when our emotional, spiritual health isn’t as well cared for, that physical pain becomes worse too. We see these symptom clusters. So a big part of what we need to think about is how those interact and thinking with not only the physicians and nurse practitioners, but with social work and with counselors and psychologists and therapists and chaplains about how do we think about the interactions together.
I’ve had times where I’ve been told, “Just set up a palliative care program, you can just hang your shingle out.” And the answer is it has to be interdisciplinary, it has to be multidisciplinary so that we are thinking about this together. That’s where, to me, that whole person approach becomes critical. And there are times where we spend much more time thinking about the emotional, psychological, spiritual pieces of pain. And that actually helps with the physical pieces. There are other times where, again, using radiation, other techniques, where helping with the physical pieces can really help with those other connections. If that makes sense.
Catherine Ormerod MSS, MLSP (46:54):
It does, thank you.
And here’s a question I was just about to pose, but I’m going to read the the questioner’s question.
I live in a small town and I’m treated at a local hospital. How do I find a specialist, a pain specialist, or palliative care doc if they’re not being offered to me as part of my team?
Joshua A. Jones, MD, MA (47:15):
Yeah. I’m trying to remember the website. I think there’s actually through AHPM, the American Academy of Hospice and Palliative Medicine, there’s actually a link that allows you to find palliative care specialists. You can look anywhere — unfortunately, it’s right now limited to the United States — but you can look and you can find connections pretty much anywhere with that website. And Cathy, if it’s helpful, I can make sure that we get that to you. But there are ways of finding that.
Most institutions now have some level of palliative care support. There are still places where it’s only available in the inpatient setting. There are places where it’s available inpatient and outpatient. There’s still significant variability, but I would argue that standard of care means that there should be some availability.
And there have been so, so many challenges with Covid, we know that, if there is one benefit, the availability of telemedicine has been really helpful. And so sometimes I’ve had patients who live — I have a woman that I’m taking care of now who lives almost three hours from here. And obviously I can’t do radiation via telemedicine, but we do all of the symptom checks and everything else via telemedicine. And so using the website through AHPM is a great option. And then I think we can also be asking what other resources might be available via telemedicine.
Catherine Ormerod MSS, MLSP (49:15):
Great. I’m glad to hear that. I had not heard that telemedicine was being used, so that’s great in this instance.
OK. I’m looking at some of the questions I wrote down. In our closing minutes here, in communicating pain, you’ve talked about how lots of things need to be balanced. Walk me through what advice you would give to a person who is approaching this for the first time, how to start that conversation, and what to expect from their caregivers.
Joshua A. Jones, MD, MA (50:05):
I often think that the best way to start a conversation like this is to think, in advance of any visit, what are the top three to five things that I want to talk about at today’s visit. One of the downfalls that we sometimes have is waiting until we’ve been in the visit the whole time is up and we’re just about finished in time to go get an infusion or do whatever else, and by the way can we talk about a, b, c or x, y, z?
What I usually encourage people to think about is, what are those few questions for today? And you can make the list as long as you want, but what I would think about is where do you put that question about pain management into that priority list. If we’ve had lots of conversations about other things, but we’ve never had a conversation about pain, maybe for the next visit, we bump that up to the top of the list. And so coming up with that list — What are the questions? What are the things that I want to address? — and making sure that is on there becomes important.
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