Introduction
Methods
Design
Data collection
Analysis
Data management and steps to ensure quality
Findings
I would say a complex patient is someone who has multiple things going on, and often someone who has low capacity to deal with those multiple issues. So, frequently I would say someone who has some physical health issue, some mental health issue, and some social issue, it’s usually their social issue that makes them complex, and it’s all interconnected in what led them to their social issue; that may be the mental health issue, may be the physical health issue, or often social issues beget other social issues, so it’s kind of all mixed in together (Family Physician, Interview #11).
The first person who came to my mind, however, medically speaking [she’s] probably not so much [complex], but one that’s come to my mind is a young lady who’s had a complex trauma history, a lot of significant sexual abuse, and physical abuse repeated cumulative across her early childhood into adolescence. She has chronic suicide in her family with several members on a particular side of the family. She has also grown up in a situation where she’s caregiver for complex disability, family members that have osteogenesis imperfecta, so really complex in that those conditions are really unique, and some real specialization around the family care and the family system. That was pretty complex and unique (Counsellor/Therapist at Community Health Centre, Interview 14).
When we talk about patients being medically complex, part of the problem is the creation of complexity by the actions of health care providers and the system itself, and often you need a truly interprofessional group to kind of articulate what the care goals are, bring them into alignment, and put a care plan in place (…) The thing about complex patients, they’re incredibly time-consuming, and if we’re going to adapt to this broad implementation we need to really fight the time battle. [And] clinicians won’t change the way they book patients, they love to say, you know, “we’ll deal with one problem only” which is the stupidest thing you can do (Primary care physician, Interview#1).
A complex patient is one who has different needs, medical needs or psycho-social needs. A challenging patient, I guess, for me, is one who frustrates me in one form or another. An example of challenging patients would be patients who frequently miss appointments, patients who don’t attend any appointments that I arrange for them, specialist appointments or do tests that I request. So, when I think of challenging patients, that’s what I think of. I think it’s completely different from complex patients (Primary care physician, Interview #30).
One of my most complex patients would be an elderly woman who is one of my chronic pain clients. She’s got multiple concerns every time she comes in. She’s got bowel troubles, she’s got blood pressure issues, she’s got cholesterol problems. She’s got lots of chronic pain, and it’s in her neck, in her shoulder, in her hip. She’s got osteoporosis. She’s got eye problems. She’s really attached to me, so it’s really difficult to also get her engaged with other sources here. She comes to me and she likes to tell me about all her different problems and then it means getting her sorted to all the different specialists that she might need. She’ll often go to the specialist and then still not be satisfied with what they had to say and want a second opinion. I find that can be quite complicated (Interview 15, nurse practitioner).
| |
We have a couple of patients coming through actually, who have had chronic pain, fibromyalgia-type diagnosis, and they’ve also had gastric bypass surgery, and then there’s also some previous injuries or surgeries on knees, or whatever it might be. Those are a couple of our complex patients coming through, and they have a difficulty at times, being heard, I think, and being understood. The complexity of the gastric bypass, and how they absorb medications and things like that, is something that they feel that people don’t quite understand, for them. Because they feel once they’ve had the gastric bypass surgery, that there’s no … absorption of the medication is completely different, and it might travel through their system faster or slower, or whatever it might be, and they feel that they’re not being heard in terms of they actually have legitimate pain (Interview 20, nurse).
| |
From a standpoint of true complexity, I had a young woman as an example, a young mother, who developed what’s called chronic regional pain syndrome, used to be RSD, so what I’ve come to think of as a substantial wiring problem in the pain system (Interview 22, Family Physician).
| |
Complex would be a patient … we have a patient that has cancer. I think it’s colon cancer. He is a smoker. He has hypertension and diabetes. He’s obese. He has a lot of pain. So that would be a complex patient just because he’s on chemo and then half the time when he’s walking here he’s in so much pain. He has trouble walking from one end to the other. Like him, it would be trying to make him comfortable and stuff but then his significant other is … she’s an alcoholic and I don’t know if she takes drugs or not but that’s complex too. The whole situation, like you’ve got to look at the patient plus whatever happens with the patient, like things that happen around the patient, so significant other and other stressors (Interview 24, nurse).
|
I consider my complex patients my ones that have lots of medical conditions that you need to manage and multiple medications. My description of a challenging patient is more often behavioural, whether it’s from a psychiatric perspective. It’s just how I define them as challenging. They may have more psychiatric underlying issues or actually often chronic pain (Primary care physician, Interview #21).
Yeah, I mean I guess we have medically complex patients, we get referred sometimes patients from the hospital who don’t have a family doctor, those tend to be the medically complex patients with multiple medical issues, on a large number of medications. We use the term complex and vulnerable, partially because sometimes patients are complex because of their social circumstances, because they’re under-housed, living in shelters or homeless (Primary care physician, Interview #5).
I find chronic pain patients really interesting to me (…), you can learn a lot from these patients. But to learn how to manage them, it really takes years. They’re very difficult. So, I find knowing about the chronic pain is very useful in general practice, and knowing the psychiatry of these patients extremely useful, and that’s a huge lack in our healthcare teaching. To see these patients, it takes quite a few years to figure them out and get used to them, and to know what to do with them. And, you have to be extremely patient as well, and a little bit creative. You have to know about all different branches of medicine to some extent, because it’s all going to come into the management (Primary care physician, Interview 38).
These socially-dysfunctional patients, this is the worst group, because they will come over and over, like a boomerang. There is no way to establish rapport, there is no way to establish boundaries because there are no boundaries. They will be most demanding. Some of them have real personality disorders and there’s not much can be done. So, this patient, pretty much in my opinion, they need to be kicked out of the family practice. They actually need to be kicked out of the medical system generally speaking, because they’re not really patients … (Internal Medicine Specialist, Interview 36).
So there’s a lack of continuity. The services that people attend are by and large pretty good, but if you’re not very bright, you don’t speak very good English, you’re not very mobile, then you can fall through the cracks and there’s no way for the system to easily pick that up and respond (…). The fact is that it’s a disaster what the system is currently. There is a lot of different strains that have made it a disaster (Primary care physician, Interview 7).
I think the bottom line is that it’s very, very challenging. I think there are a lot of things in our current health care environment that are not sustainable. The transition periods are always the biggest challenge, so from primary care to specialist, from acute hospital to chronic rehab, these transitions, phases. It’s just the way the system, I think, historically has been set up. Patients don’t know how to navigate the system, and we live under this premise that we all have universal access to health care (…) I think there does need to be a lot of changes to the processes of how we manage these patients and help them navigate the system and implement a system that is a little bit more efficient that way (Surgeon, Interview #25).