Components of the patient-derived clinical empathy model corresponding to the absence or deficiency of clinical empathy, and illustrative quotations
| Model item; patient-perceived phenomenon | Illustrative quotation* |
|---|---|
| Physician factors | |
| I think the doctors have started to become mechanical in their work because they’re so busy and the true compassion of what they’re supposed to be doing has started to dissipate because they know that there’s X number of people right behind you that they’ve got to deal with. (5A) |
| I think … some physicians … don’t respond to people with chronic conditions anymore because they can’t deal with the fact that there’s nothing they can do to help them. … It’s burning them out and they don’t have a way to deal with that. (1C) |
| There’s a little less room for empathy, or a little less room for understanding the patient’s perspective, because it’s really hard to do that and be God at the same time. (5A) [What happens] to a lot of us women … is the assumption that when we talk about pains … “Oh it’s just period pain, that’s normal,” “Oh, it’s just some anxiety,” “Oh, it’s just some depression.”… Unless you would say it to yourself, then it’s not appropriate. (1C) |
| Prioritizing physician’s ways of knowing | |
| I just felt like giving up because I was so frustrated, and the frustration had to do with that doctor because he just wasn’t listening to me. (6C) |
| The patient knows their body best. They’re the one who lives in it 24/7. Just because the doctor has been to medical school and knows how everything works does not mean that they’re the expert on the patient’s body. (1C) |
| I think that my biggest problem right now is that … [the physician] is looking at me as a disease, not as the person that has the disease, and all the issues I’m having with the meds they’re putting me on. (6C) |
| Behaviours conveying absence of clinical empathy | |
| It’s anywhere from being dismissed to belittling. And I think because of the label of my chronic illness … so many things are brushed under the rug of that diagnosis, which actually shouldn’t be under that diagnosis. (2A) |
| I’ve been called crazy, I’ve been laughed at. (2B) |
| When things don’t go well, I relate that more to my doctor not providing an explanation why we can’t do A, B and C. … I find that is lacking as well, the communication and the education of my physician’s decision-making, and that leaves me in the dark where I feel like my needs aren’t being addressed and I’m not being heard. (5B) |
| When they saw my pain medications they said, “Oh, you know what? You’re an addict, you need to go to the pain clinic.” (1C) I got off of [medications] and my pain didn’t change, so now whenever I go to the doctor, they’re like, “Well, you’re not on any medications, so you don’t really have a problem.” (3A) |
| Negative processing | |
| I lost a lot of trust in the medical profession, and I was planning to just stop going to the doctor altogether and just kind of give up. My doctor was giving me no options, no help at all, and I just felt like she didn’t understand me, she wasn’t trying anymore, she just … seemed frustrated that nothing she was doing was working to help me. (1A) I think the part that kind of hits the deepest is that … I’m losing trust in the entire system. And that’s really scary. (2A) |
| Mentally, in my daily life … [the lack of clinical empathy] makes you feel crazy, it makes you feel like what you’re feeling isn’t real. (1A) |
| I usually end up leaving and I’m in tears. (2B) [A negative appointment] can trigger things like depression and anxiety and can make you feel down for several days, if not more … and then it can give you sort of like PTSD-type symptoms. You get nervous about going to the doctor or specialist … you go, “Oh my God, I’ve got the appointment again, oh my God.” … That hypervigilance sort of stuff — and you can’t sleep the night before because you’re so nervous about “How is this doctor going to treat me?” (1C) |
| I find myself being a lot more critical of myself for having the condition as if it’s my own personal failure for having it, which I know is wrong, but I just can’t seem to stop myself from doing that. (3B) When my doctor is having a good day and he’s very receptive and listening, I leave that appointment much better than when he’s having a dismissive-type day — the whole thing just starts on a downward spiral and I feel worse about myself and guiltier about needing him. (3C) |
| I think [the lack of clinical empathy] does strip that hope away bit by bit, and it’s hard to care about yourself when no one else … seems to care. (5C) |
| Disrupted personal life | |
| [Doctors] want you to lose weight but … I have to get some exercise in order to lose weight, and in order to exercise I have to be relatively pain free, because if I exercise I’m going to be in even more pain and then I can’t go to work. (1B) I feel very hopeless because I’m trying to live my life, I have a child and a full-time job and when [the doctor] tells me “This is just your life now” and I’m barely getting by, that’s not very hopeful. Just give me some hope. (1A) |
| Reduced quality and increased use of health care services | |
| “We don’t have time to address all of this today,” whereas I feel like if I could just have that 1 chunk of time, I wouldn’t have to come back as often. (3C) You feel some anger toward the system, but at the same time you feel guilt because you keep going back, hoping for a different result. (3B) |
| I waited on a waiting list for almost 5 years, and they gave me [an appointment] … 30 miles away. … When you’re sick, you can’t do that in a taxi. (4B) I can’t pay for a lot of things that my doctor says I need. (2A) |
| Shortness of breath, chest pain in the middle and on the left … really classic symptoms that you should go to the hospital for, and I just didn’t want to. … I was so exhausted from doctors that I didn’t want to. (2A) My eyes went yellow before I would go to the doctor because I was like, “They’re not going to believe me anyway.” (4C) |
| I don’t tell doctors everything anymore, either because I feel like … if I tell them past experiences then it just nullifies everything I’m about to tell them, and they won’t even look into it because “Oh, it’s just part of this [illness].” (1A) |
| Negative health outcomes | |
| My emotional health, which unfortunately affects my physical health given the condition that I’m dealing with … I go home cranky or I grab a chocolate bar because I am an emotional eater. (5B) And the doctor at the hospital didn’t want to do tests because he was like “Oh, you have this chronic pain condition, that’s probably what it is.” … And I had fucking pneumonia. (2A) I know that stress makes pain worse. … Basically anytime I have to deal with a doctor, I know I’m going to flare. (2A) And when they finally did diagnose [my daughter’s rheumatoid arthritis], it was so aggressive that they’ve had a hell of a time getting it brought back down. And I think if someone had just really sat and listened in the first place, a lot of steps could probably have been skipped, and [my daughter] wouldn’t have suffered as much, either. (3C) |
| It becomes difficult to live day to day, and it’s difficult when the person who’s supposed to understand you doesn’t. … It feels like I’m just screaming into the void sometimes. (5C) I really think doctors need to know that … their decisions, their diagnosis, the way that they treat their patients can really, really make a huge impact. I’ve been to the point where I just don’t want to be here. I have 2 kids, and that’s what’s kept me here. (2B) If I’m not listened to or feel like my medical professional is not partnering with me, then, to a certain extent, it’s almost “What’s the point of being alive?” (1B) |
Note: PTSD = posttraumatic stress disorder.
↵* Participants are designated by a number representing the focus group they attended and a unique letter within that group.