Cancer survivor-provider interactions
When describing pain management interactions with providers, participants emphasized the importance of feeling understood by their care team. Their care teams included a mix of primary care and specialty providers, including oncologists and palliative care providers as well as, occasionally, neurologists and pain specialists. In general, participants did not identify a specific provider or providers as their primary pain provider. A few participants described only positive experiences in which they felt validated and supported by their providers. The majority described feeling, at times, a disconnect between their own chronic pain experiences—with pain fundamentally altering their day-to-day lives—and the way they interacted with their providers around pain management. Specifically, they described limited communication about pain. When they did communicate their pain to providers, participants described often feeling misunderstood. Based on their own experiences, all participants discussed strategies that might support effective communication about pain and help cancer survivors to feel understood in their pain experience. Below, we describe interview findings related to key barriers to effective pain communication and potential strategies to overcome them.
Barriers to effective communication about pain may limit providers’ ability to fully recognize and effectively address pain among cancer survivors.
Barrier 1: The nature of clinical encounters does not facilitate adequate discussions around pain.
Participants described that their appointments are often short—“five minutes and that’s it” (59 year old, male, lung cancer survivor)—and that pain management is not always prioritized. They reported being asked to provide a pain score only at some appointments, and did not feel this was an adequate measure to reflect the nuance of their pain experience, including pain fluctuating throughout the day and limiting their activities. Limited time and inadequate pain assessment made it difficult for participants to have open and candid conversations with providers about their pain.
“Occasionally, that is a question, "Are you experiencing any pain today?" I'll get asked that. "Yes." "Well, how would you rate that pain?" […], "Well, how often are you experiencing it?" I might get some more follow-up questions about it. But what I'm dealing with, so I feel better in the mornings, and my appointments are usually 8:30 in the morning. But if went at 6:30 at night and they asked me, […] it might be different.” – 55 year old, female, breast cancer survivor
Barrier 2: Cancer survivors may minimize their pain.
Participants described sometimes minimizing their pain, both to themselves and to their providers. One reason for minimizing pain included a sense that they should feel ‘lucky to be alive.’ Participants also described feeling like they had already asked enough of their providers and the health system, and feared that bringing up their pain could be seen as ‘complaining’ or ‘being difficult.’
“I hate that anybody has to go through pain like I have to go through it, and I’m sure there’s people out there that’s in worse pain than I am. So, I don’t try to complain any.” – 79 year old, female, lung cancer survivor
“I have to remind myself that I am still here, so I’m very lucky, and that there are other people who are much worse off than I am. And, so, for cancer treatments, I feel like I’ve sort of dodged a bullet for what other sort of things I could have gone through.” – 53 year old, female, breast cancer survivor
Barrier 3: When cancer survivors do communicate their pain, providers may not adequately acknowledge or validate the pain experience.
When proactively seeking pain management, participants described sometimes feeling misunderstood or unheard by their providers. Participants described how providers may question the intensity or dismiss the origin of their pain. Some participants described encounters in which providers responded in disbelief to persistent pain. Participants explained that, if the provider could not identify the origin of a symptom, they may question its validity in a way that makes cancer survivors feel dismissed. This contributed to participants’ feelings of distress and anxiety.
You have to be your own advocate, and you have to fight. And, a lot of people I’ve met now with breast cancer, as I’ve talked to them about their experiences, it’s sort of been the same – is a lot of the times, they think you’re crazy on these drugs [hormonal therapy], and the pain that you’re having is all in your head. – 53 year old, female, breast cancer survivor
Similarly, some participants described struggling to connect with providers who did not appreciate how exceptionally distressing their experience was. This was frustrating for cancer survivors with untreated pain. If their provider was unwilling to try new things or alternative approaches, it indicated that they did not understand the suffering.
“I think sometimes there’s a naivete on the part of the physician and things become a little black-and-white for them. […] What I mean by that is sometimes people are not open to alternative approaches. That can be disheartening when they’re not the ones that are suffering, but you are.” – 67 year old, male, lung cancer survivor
Potential Strategies: Participants reported that they felt understood when providers recognized the impact of chronic pain on their lives, helped them to work towards functional goals and engaged them in identifying pain management options.
Participants discussed strategies their providers had used, or that they wished their providers would use, to help them feel more comfortable communicating about their pain, and more supported and understood in their pain experience. Participants who reported barriers to effective communication suggested that providers could help by normalizing pain, and asking about it more regularly and in an open-ended way.
“I needed that reassurance that this is normal. Normal in this unnormal situation.” – 40 year old, female, breast cancer survivor
“If the oncologist can be a little bit more solicitous to the patients about the pain. To normalize it a little bit. "Hey, some of our patients experience a lot of pain, how are you doing?" Instead of just giving me a little questionnaire to fill out every time, let's have an honest conversation about this. Because if he would broach the subject with me, I would be more likely to talk about it. Where is like I'm always the one bringing it up, and so I feel like I'm being a baby. That's the only thing that I would like to see, is make us comfortable talking about it.” – 55 year old, female, breast cancer survivor
Similarly, those who reported positive experiences described how providers listened and asked open-ended questions about the pain experience. Setting functional goals with a provider was important to survivors in this sample and made them feel supported. In addition, having options made patients feel a part of the decision-making process. Participants appreciated working with a provider who was willing to try different things, reassess the strategy as needed and be realistic about the patient’s capacity.
“I would call him empathetic. He's a very good listener, and I think he really understands some of the functional limitations that I've had since, because of the pain. And he's worked hard to try to help me manage the pain so I could function.” – 62 year old, male, head/neck cancer survivor
“They were very open to my input. It wasn’t no, this is what you’re gonna do or this is your only option. They gave me options and they allowed me to feel like I had some control over what was going on.” – 52 year old, female, breast cancer survivor
“My neurologist finally got it. Initially, I felt like I was being not kissed off but looked at as I’m imagining what symptoms I would describe. And then one day I was with my neurologist when she was talking about the treatment plan, and what wasn’t affected, and what I was trying to describe to her was not matching that. And I just broke down in frustration and cried, and I said you’re not listening to me. I’m trying to tell you this is what’s hurting. This is the way it feels. And then, she stopped and she actually listened and that’s when she began to put me on the journey of physical therapy and now, pain management.” – 81 year old, female, breast cancer survivor