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| Illustrative quotations |
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| 1.0 Family physicians’ mental models |
| 1.1 Have to rebuild their mental models—practicing as “experts in the moment” and requiring “knowledge on demand” | “Yes, I think this is quite typical of primary care, … my knowledge and skill has been upscaled the longer I've looked after him. I've learnt from the helpful letters from the liver clinic…. Sadly, when I'll no longer look after him, I'm sure I'll gradually descale again, but again, with the myriad of other conditions I'll become an expert in another area, and another area….” (FP3) |
| “Enough that it's a problem, but not enough that maybe we're good at it [family physicians seeing patients with cirrhosis]. It's not like heart failure or pneumonia - pretty garden variety stuff you see all the time, but when the cirrhotics come in, especially the decompensated ones, they're very sick and there's a lot of intricacies to think about.” (FP2) |
| “All of these things are sort of foreseeable in various ways, shapes or forms and yet every single time it's like you're reinventing the wheel.” (FP4) |
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| 1.2 Vary in what they consider to be the primary care scope for managing patients with cirrhosis | “I'm trying to deal with the alcohol and I'm trying to help with some of the barriers as to why he's drinking again and then also trying to deal with some of the... he doesn't have any access to money, and I'm trying to get him into some programs, you know, get him established.” (FP5) |
| “Yes, like I mean, I was mostly leaving it up to the hepatology clinic.” (FP6) |
| “…very few people will ask him about depression, how's your mood doing with all of this? How's your relationship with your wife? What's happening with your children? … trying to be, you know, as it says on our label - family physician, so therefore involving the family with that as well”. (FP3) |
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| 1.3 Depend upon relationships to seek guidance | “It makes me realize reflectively just how complicated this thing is…. What it shows is a lot of this complex care is about relationships… I see a really strong team who looks after this patient, and sadly all it takes is for one of those members in that team to change for a period of time and that patient ends up becoming an admission, which could've been avoided.” (FP3) |
| “It's all we could do was (a) discover he was admitted, (b) call to see if he was still admitted because of course the time delay there, and then by the time that had happened they were already on discharge planning or had already discharged him…well wouldn't it be nice if we…could have collaborated a little bit more and tried to find a bit of an overall solution to this instead of just playing the admission/discharge deterioration game over, and over again”. (FP4) |
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| 1.4 Experience geographic location as major barrier | “The city is about two hours away and a lot of people don't want to get themselves involved in traveling, so there are so many challenges when you're referring to places in our area.” (FP1) |
| “Well, you know, it's probably very difficult for them (the patients) because these people are traveling a great distance… the travel is a bit of a barrier. We don't have access to the specialist that would do our cirrhosis care.” (FP2) |
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| 2.0 Specialists’ mental models |
| 2.1 Have rich mental models of cirrhosis care but are well aware of the gaps—“swiss cheese model” | “I think the way our system is structured now is very poor…like these cirrhotic patients, many of them they're not going to just have cirrhosis. A lot of them are going to have diabetes, they're going to have hypertension, they're going to have heart failure, they're going to have all sorts of other diagnostic problems, and I think the subspecialty model has failed to address that.” (SP7) |
| Well I work with other physicians in the hospital, but it's not a team, like I see my own patients and they're my responsibility. I don't have anybody like working with me per se… I don't have a nurse, I don't have a dietician or a pharmacist that works with me, it's just me…if a patient is really sick it's me...having to be alert as to whether … am I missing anything. It would be nice to have backup or help. (SP3) |
| We sometimes don't carefully delineate, hey you're going to be responsible for, you know, the colon cancers, you know, the rectals and the PAP tests and the mammograms, and, we're going to take care of the cardiovascular arresting, who's going to manage the blood pressure. (SP1) |
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| 2.2 Vary in what they see their role is in filling the gaps in cirrhosis care | “I've always considered myself to be like their primary liver specialist, …any problems that had to do with their liver, so cancer, bleeding, whatever…that would be my duty to take care of… if a patient thinks that they're swelling up and they need a paracentesis I expect them to call me not their family doctor … I'm the bridge toward referral to transplant, my level of involvement depends on how sick they are.” (SP4) |
| “Most of my patients in my clinic practice do have a family physician… if they don't have a family physician and the diagnosis is serious enough I will actually follow them until I've sorted it out…I would volunteer to keep an eye on them over the next few months until we... found another family doctor or sorted out who's going to look after them.” (SP7) |
| “…my letters, they’re extremely long and detailed… a kind of laundry list of things that they (family physicians) would hopefully check off…when that doesn’t happen, which is often the case because a lot of these patients end up actually kind of being not attached… then it kind of falls back to me… I don't get a letter back from the family doctor saying they're doing anything. I see them (the patient) and nothing's been done, nothing's been checked, so it's not the majority but it's a sizeable minority of patients that are pretty uncared for in general... it's not really clear if there's someone actually managing their care overall.” (SP9) |
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| 3.0 Nurse practitioners’ mental models |
| 3.1 Rich mental models—similar to “swiss cheese” model but taking responsibility for the gaps | “…I think we've got a long way to go in terms of understanding what our patients understand. We don't often ask. We have to take the time to explain and to educate and to ensure that they [patients] understand, and give them an opportunity to ask those questions.” (NP1) |
| “…I think it's a real bonus to patients because I do have the time a physician may or may not have to spend with that patient, and actually get to know them and hear about what's going on in their lives, and what matters to them, and what challenges they're having, it's not just specifically - I'm here to deal with your medical issues and we're done so see you later.” (NP2) |
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| 3.2 Challenges facing nurse practitioners in coordinating cirrhosis care | “…there are those physicians that I will send a referral to and they will return the referral back to one of the hepatologists, so the letter goes back to them, not to me, even though I was the person that sent the referral, it’s challenging… “(NP2) |
| “We're rarely notified that they're [patient] in hospital. We're inconsistently copied on the discharge summaries. So we don't often know when there's a gap in care until it's too late.” (NP1) |
| 4.0 Prominent category: managing the unknown, unexpected, and irregular |
| 4.1 The expected unexpected | “… the recurrent unexpected happened in terms of, you know, unpredictable Emergency room visits, so any particular day was hard to predict, but globally recurrent visits to the Emergency room, recurrent visits to the clinic, recurrent sort of stretches where [patient] wouldn't go to the pharmacy because of med compliance etc., so those are sort of the expected unexpected events.” (FP4) |
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| 4.2 Complexity of cirrhosis care | “…he had episodes of hepatic encephalopathy, so that's what made his care management more challenging was the cognitive aspect of that. …He would lose housing frequently. He would go in and out of Emergency because of his thinking, his med compliances, edema, so just chasing him down wherever he went and trying to work out a proactive plan for that, it never really seemed to happen. We were always chasing our tail it seemed. (FP4) |
| “…these patients in advanced cirrhosis are challenging patients, and there's social issues, there's medication issues, there's blood tests to be done, and there's all sorts of other issues.” (SP7) |
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| 4.3 Socioeconomic instability | “Apart from that I also hope that as family physicians we would focus a little more on other social determinants for the patient because many of them have real issues. We know housing issues, money issues, addictions issues. Some of them need to go to rehab.” (FP7) |
| “The trouble is a lot of these people get labelled, and society is very judgemental about them and doesn't…really care about them.” (SP7) |
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| 4.4. Potential solutions | “I just wish I had an understanding for … what to do… I would want some sort of pathway that I know I can rock solidly rely on.” (FP5) |
| “I think that's where peer support workers could be really useful is helping people who are so reticent to go for their screening or for either liver cancer or esophageal varices because it's a really frightening thing.” (SP2) |
| “Flexibility and scheduling…have like a half-day a month where no one needs a specific hard appointment to be seen… you know, last Friday of the month is marginalized population day…” (FP4) |
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