Article Figures & Tables
Figures
- Figure 1:
Model of patient-perceived clinical empathy and its downstream effects on health care delivery and patient outcomes when absent or present. Note that many physician–patient interactions combine elements of both sides of the model.
Tables
Characteristic No. (%) of participants
n = 20Gender identity Woman 17 (85) Man 3 (15) Age, yr 18–35 4 (20) 36–55 8 (40) 56–75 7 (35) ≥ 76 1 (5) Education High school graduate 2 (10) Some postsecondary studies, no degree 4 (20) College or vocational degree 5 (25) Undergraduate degree 6 (30) Postgraduate degree 3 (15) Identified as visible minority 4 (20)* Province/territory in which participant primarily received health care† British Columbia 4 (20) Alberta 1 (5) Saskatchewan 1 (5) Manitoba 1 (5) Ontario 12 (60) Nova Scotia 1 (5) Newfoundland and Labrador 1 (5) Region of residence Rural 4 (20) Urban/population centre 16 (80) Population 30 000–99 999 4 (20) Population 100 000–499 999 7 (35) Population ≥ 500 000 5 (25) Classification of chronic illness Primarily physical 7 (35) Both physical and mental 13 (65) - Table 2:
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 Physician specialty
Burnout, patient load, setting, time/resources
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) Physician frustration with lack of patient improvement
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) Ableism/hierarchy in medicine
Implicit/explicit biases
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 Not listening to patient
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) Anchoring on assumptions, stereotypes, schemas
Not trusting the patient’s experience and knowledge of their own body
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) Seeing the patient as their disease rather than a whole person
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 Lack of support/validation
Lack of effort, “giving up,” dismissiveness
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) Insults, discrimination, “gaslighting”
I’ve been called crazy, I’ve been laughed at. (2B) Inadequate explanations
Failure to collaborate with patient
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) “Pill-pushing”
Patient-blaming/labelling
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 Loss of trust in physicians and health care system
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)Questioning own feelings and reality
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) Health care trauma and avoidance of future encounters
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)Feelings of guilt, burdensomeness, shame for not getting better
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)Loss of hope
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 Ability to work and relationships with partner/family affected
[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 More appointments and referrals
“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)Inaccessible treatments and nonadherence
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)Avoiding seeking health care
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)Withholding health information
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 Physical health: mediated by stress, unhealthy lifestyle choices, delayed pursuit of care, leaving hospital against medical advice, nonadherence and delayed/refused treatment
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)Mental health: reduced self-esteem, emotional exhaustion, anxiety, depression and suicidal ideation
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.
- Table 3:
Components of the patient-derived clinical empathy model corresponding to the presence of clinical empathy, and illustrative quotations
Model item; patient-perceived phenomenon Illustrative quotation* Physician factors Adequate time and resources
Being treated kindly by patients
Personal experience with chronic illness
I think there may be some room here for training patients to try to recognize that doctors are people, too. (6A)
Having cancer made [my oncologist] a better doctor because, all of a sudden, he realized what it was like being helpless, and in that bed, and waiting for somebody who knew something to do something, and having no control. (5A)
Being a doctor doesn’t just mean curing or giving medicine or diagnoses. … The responsibility, to me, is just so great. So, I take my hat off to anyone who wants to be in medicine, I’m very grateful … because we really do need them. But we really need them to help us, too. (2B)Engaging with patient’s experience Listening mindfully to patient to learn about their experience, while acknowledging the physician cannot fully understand it
Seeing patient as a whole person rather than just their disease
Believing and trusting patient as an expert on their own body
There’s only one [doctor] that’s been able to communicate to me … not that they understand, but they’re truthful in the fact that they say that they can’t understand. (2A)
[The doctor] heard me, and she knew my whole story as a human being, not just my illness. (4A)
If a doctor believes, and I go home, I’m happy, I’m very happy. (6D)Behaviours showing presence of clinical empathy Communication that is honest, supportive, validating and normalizing
Willingness to put in effort, even if physician does not know exactly what to do
Trauma-informed care
Collaborating with patient to develop care plan, valuing their perspective/research
The doctor taking the time and acknowledging feelings, validating feelings and providing that … reassurance or encouragement, or just saying ‘Yes, it sucks, but this is what we’re going to do.” (5B)
I’ve had some times with doctors who’ve been really, really great. … I’ve been able to come with them to research about medications that I thought, “Hey, can we try this?” and we’ve talked about it, and we’ve come up with a collaborative plan, and that’s been awesome. (1C)Positive processing Feelings of hope and empowerment
Increased trust in physician and health care system
I guess just to listen to you and make you feel … validated and that it’s not all in your head, and just give you some hope to just get through to your next appointment, something to try. … My mood definitely gets better … I feel less hopeless, less depressed, just not as scared or … nervous to go to the doctor the next time because of … “How is this appointment gonna go?” (1A) Enhanced health care More likely to self-educate, try new treatments, adhere to treatments and make healthier lifestyle changes
I’ve been a smoker for 43 years, on and off, and this time was the easiest time for me to quit … I think because my physician was supporting me and all of the aspects. (1B) Enhanced mental health and well-being Improved mood and energy levels
Increased confidence, self-image and resilience
“If you can’t see the light at the end of the tunnel, there’s no point in being alive” is the way I talked to myself. … I think I have renewed hope because I have a medical professional on my side. … I don’t even think you can quantify or put a value to having somebody that works with you and listens to you, and it makes you feel valid. (1B)
You feel more hopeful. Not necessarily that your pain will go away or your disease will go away. It’s just that I’ll have as normal a life as I possibly can given my current condition. And you feel validated, so it gives you the courage to try new things, it improves your actual physical and mental energy, and, trust me, when you suffer from chronic pain, that is depleted before you even get out of bed. (1B)↵* Participants are designated by a number representing the focus group they attended and a unique letter within that group.
- Table 4:
Participant recommendations for medical education to improve clinical empathy in future physicians
Category Recommendation Admission to medical school Diversity and emotional intelligence should be factored into selection
Personal experience as a patient should be considered an asset in applicants
Curriculum content Teaching on: Interplay between mental and physical health
Cultural humility and anti-oppression training
Nonmedical factors affecting health, such as socioeconomic status and health care accessibility
Alternative treatments that patients may be receiving (for physician awareness/understanding, not practice)
Practical training Formal training in interviewing and therapy techniques
Evaluation of students’ interpersonal and communication skills
Knowledge of patient experience Incorporation of patient stories, especially those told by patients themselves
Teaching on medical trauma and medical gaslighting, and the emotional implications for patients
Physician mental health Teaching on strategies to identify and mitigate burnout
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