Understanding patient experiences. Fiona Webster, Ph d. Design. Developed standardized approach across individual projects Flexible, adaptable, followed best practices Part of emerging field Allows us to look beyond level of individual patient satisfaction. Themes.
Fiona Webster, Phd
People do not want to go to the ED, but often believe they have nowhere else to go.
They do not have a positive experience of the care they receive.
Nevertheless they describe initiating multiple visits.
“I came to Emerg here and the doctor said to me – which I thought was very odd – “Why did you come today as opposed to yesterday or waiting ’til tomorrow?” It’s like, “Why, do you think I’m not sick enough? I can’t breathe, I feel like I can’t breathe so I came here for help”…And I thought, “Well, what am I doing here? I guess I’m just wasting their time. I just wasted some of my taxpaying dollars by coming here, right? I felt like I couldn’t breathe so I came in, right?”.(Project #1)
Literature often assumes presence of a functional family with skill and resources to be helpful.
“When you’re bombarded with doing everything like feeding, washing, cleaning, bed, supervising, picking up materials and everything, it causes a lot of stress and conflict between family members who are supposed to be divvying up the responsibility … I mean the care giving is done resentfully, the person receiving it is always … like a burden”. (Project #3 Caregiver)
Non-medical issues such as social isolation, job insecurity and housing were consistently described by patients as mediating their experiences of health and health care delivery.
Lived experiences of the medical and the social are seamlessly intertwined
In addition to professional silos and disease silos we often artificially separate medical and social issues
“Some of them had language barriers, some of them were living on their own and they didn’t have a lot of supports, they didn’t know how to navigate the health care system, they didn’t like letting [care providers] into their homes so they had issues with that. Lots of things”. (Project #4 team member)
“I don’t know how many other people [find this], but the mental health aspect of it … [is] kind of depressing when you think this is going to be the rest of your life.
(Patient, Project #1)
Patients, caregivers and health care providers default to “system issues” in their descriptions, particularly of frustrations they are experiencing with care coordination and delivery.
The term itself is used to describe different phenomena (i.e. care coordination or access).
Because of the wide variation in meaning, use of the term may create a false sense of common understanding while masking effective solutions.
“Well in my case it [the 800 number] has kept me out of Emergency. I mean, I can think of at least two occasions when, if it wasn’t here, I probably would have gone to Emerg”
However, this same patient goes on to recount how they develped another health problem which necessitated a trip to the ED …
Most patients described receiving a benefit from the care models.
These benefits were not necessarily the specific objective of the intervention, but were rather an unintended positive consequence.
Patients consistently described feeling cared for as an important benefit of the intervention and this held true across the various disease groups.
“For me it was comforting. I thought at last I’m gonna get some help. That’s exactly what it meant to me. I was very grateful. I couldn’t get out, you know, could do very very little, didn’t know what was going on, there was no explanation offered [as to] why I couldn’t move. So yeah I was very, very happy”. (Project #3 patient)
“Man, it’s just nice knowing there’s somebody out there, it sort of gives a person a little bit of comfort knowing, it’s sort of living having one of those security blankets you know”.(Project # 2 patient)
Many cited the opportunity to receive a diagnosis as a clear benefit to the intervention.
“I spent a month with the, with the wrong diagnosis, being told that basically that I was crazy. I did end up going to a different hospital and I was diagnosed correctly. The hardest time in my life was in the month of not being diagnosed because I had no supports, I was alone and I couldn’t walk, I couldn’t get downstairs, I was virtually a prisoner on the second floor in my room and I had very little, very little to eat and [Oh no] it was terrible”. (Project #2 patient)
“This is a little bit funny – it’s not really funny … the social worker came … within thirty seconds of her walking in the door I spent the next hour crying and talking non-stop so it was actually very helpful … So she was to come back that Wednesday but my mom passed away on Tuesday.. so I phoned the office to say “I’m really sorry I can’t make the appointment” and the central office phoned me back to say “Well, now your services are terminated” because they were attached to my mom, right, they weren’t for me, they were attached to my mom and now she’s dead, so I’m sorry we have to cut you off”. (Caregiver, Project #3)
We were able to identify common issues across the different projects and diverse patient populations
These relate to insights about care coordination, patient complexity and integration
But also assumptions we often make about patients, about family systems, about the importance of such basics as diagnosis and caring
Future meta-analyses could be designed from the outset with key objectives identified for measurement
Increasingly original qualitative data sets are being re-framed through a process of “collaborative analysis”
Whether or not we reach a pre-set target, such as reducing ED visits, we do know that we have improved the experience of care in some way for most patients as they struggle with the complexities of social isolation, poverty, disease and mental illness as well as complex medical problems.