Quotes illustrating themes
| Theme | Representative quote |
|---|---|
| Variable understanding of advance care planning | |
| Patients | I think it [advance care planning] just means … where you go and what you do when you get to the point where you can’t look after yourself. (supportive living patient 2) Oh yeah, my will’s all done. (heart function clinic patient 1) Yeah, we have done that … we have our funeral arrangements all made. (supportive living patient 3) We’ve gone through the process of arranging our, what do they call it, the finances and I believe the health issues if we’re unable to make decisions. (renal failure clinic patient 7) You could say that the ... bone marrow transplant was care planning because the… Rituxan [rituximab] didn’t work, so we’re looking to plan for the next. … And then after that, we planned for the next event because we knew it’s [lymphoma] going to come back or we assumed it would come back, so we got into bendamustine. (cancer clinic patient 2) First of all … you’d have to be afraid of dying in order to do a whole bunch of the advance planning. I’m not scared to die … I don’t want to live in a bed or a wheelchair … so if that’s called advance planning, then that’s as far as I’ve ever gone because I just don’t want to be a burden to anybody else. (heart function clinic patient 5) We spent a lot of time thinking about what we wanted. This isn’t something you can just sign, you have to really think about it. (supportive living patient 8) |
| Clinicians | Originally, I thought it was something that got you right to the resources, but now I understand it’s a way of thinking, a way of managing, a way of preparing family and the patient to think about what they want to do for the next stage of their life. (heart function clinic dietitian) It’s our obligation … to keep people informed about what may happen to them in the future ... how they can participate and decide what happens to them. (heart function clinic physician 1) Often they [physicians] would push the Goals of Care [Designation] sheet across to the family and say “Do you want them left where they are right now, or should we put them at another level?” And … I’m not in charge of that whole process, but it’s kind of like “Let’s just take a step back for a minute, and let’s talk about what changes maybe you’ve seen in the last year.” (supportive living nurse 3) The situation where I work, I think it’s more … starting a conversation … about patients’ wishes ... both the patient and the family … with the ultimate goal at least to put something on paper. (cancer clinic physician 1) |
| Inconsistent process and role uncertainty | |
| Heart function clinic | I know that … the heart failure clinics are very structured. So nursing, I’m certain … approaches patients about that [advance care planning] early on in their interactions with them. … Whether that happens on the first encounter, we’re not sure. (physician 2) Usually it’s the nurse who brings it up. Sometimes it’s the physician. It depends on the situation but it’s definitely not a conversation that we do on a regular basis. (physician 5) |
| Cancer clinic | It’s just like anything else. … “Do you have an allergy? Are you on any medications? What are your goals ... what do you want us to achieve here?” (physician 3) As the physician, it’s my responsibility. I hate it — I absolutely hate it, especially if I don’t know the person. (physician 4) |
| Supportive living | They [nurses] don’t know whether — how far they should go, what they should do. (nurse 1) I really think that the multidisciplinary team don’t know … there’s this huge role. (nurse 2) |
| Renal failure clinic | We make sure that once a year, like when … the patient comes in to see the nephrologist, that the goals of care are up to date and if [the patient is] not … letting the nephrologist know, so then that nephrologist can have that conversation with the patient. (nurse 1) |
| Disease burden | We have an advance care planning nurse, so we kind of let her do her thing. (renal failure clinic physician 2) The challenge with chronic conditions, especially in cardiac, is the trajectory of their illness is unknown, and it’s up and down and up and down, so there may … be points where they’re feeling … “These are my wishes’”… and then the course of their illness changes, so their idea of what they want to continue on with changes. … But that’s where it becomes really important … that you’re having those conversations on more than 1 occasion. (heart function clinic physician 1) I don’t mind talking about it. I know I’m going to die. Sooner or later. (heart function clinic patient 5) We have to talk to people about their prognosis … in part because we can modify it by giving them drug therapies or device therapies … and some of those therapies also have a benefit in terms of how people feel, and some of them don’t. So it automatically generates a discussion about whether that’s a value to them. (heart function clinic physician 6) I guess I want to be in control of my life … and if I have to rely on somebody else to feed me and dress me and take me to the toilet, I don’t want that. I refuse. … That’s quality of life. (heart function clinic patient 9) Unfortunately, we get asked when we’re in the midst of being acutely ill. And therefore, you’re not equipped to come up with those answers as easily as you would’ve if you were feeling well. (cancer clinic patient 4) There’s a certain threshold that you cross, and once you cross that threshold, that’s when these conversations happen more easily, right? (cancer clinic patient 5) My practice is mostly lymphoma, so there might be patients who I meet the first time in the ... consultation ... [to whom] I’d say “Okay, look, you have a very aggressive lymphoma. I’m not sure this [transplant] is going to work. We’re going to try this going in, but at some point, if things aren’t working, we’re going to have a different discussion.” ... So for some patients it’s really obvious I can do that, and then [for] others, it’s a pretty straightforward thing ... “No, no, we’re still heading into cure” and I don’t have to talk about the negatives. (cancer clinic physician 1) Probably if the doctor … brought it [advance care planning] up as something that … I need to look into. Like, having the doctor’s … encouragement would make ... the process easier. (cancer clinic patient 6) The medical community does note when patients are declining, and I have been asking other roles to consult to changing the goals of care when patients are declining. (renal failure clinic nurse 1) If I feel like … I don’t see very good prognosis … that death is to happen in a very near future … then I absolutely need to bring up earlier. (renal failure clinic physician 1) [Advance care planning is] something that was never really thought about. … I’m still pretty much on the healthy side. Although I have kidney failure and I have to take the dialysis. (renal failure clinic patient 1) The bigger philosophical question is whether or not … life is worth living at that point, and that … becomes very hard, especially with dementia. (supportive living physician 1) I tend to be less fatalistic … with some families who are saying “C1 [level of care] … has got dementia, “Not the man he used to be,” “Wouldn’t want to live like this,” ”We promised he wouldn’t go to a nursing home” and … I look at him and I say “Well, he’s attending programming, and he’s eating full meals, and he still recognizes his family.” (supportive living physician 2) When you get to 90 and … you don’t have the best of health and — … I wouldn’t put my family through that. … So we did talk about it, and they all agreed at the end. (supportive living patient 10) I think once you’re starting to see more frailty and more contact with the system … probably then is the time. … If it’s been awkward up until this point … you know, if you’re over 75 and you’ve been in the hospital twice in the last year … if you haven’t had the conversation, you probably should. (supportive living physician 1) |
| Relationships as conversation drivers | |
| Heart function clinic | I don’t offer them a carte blanche … . Usually, I tell them about the disease … different ways of dying … and … options … but I wouldn’t discuss transplantation in someone who’s 80 years old and has renal failure …so I don’t offer options that are not really available for that patient. (physician 1) I would say … “Do you know about this program, and it could maybe ease your family and yourself … reduce the stressors … if you can plan ahead as to how you would want things done.” (nurse 2) |
| Supportive living | You have to draw people out through your relationship and understand their values. (social worker 1) I don’t do it on the first “Hello, how are you?” I like to develop rapport with patients before introducing the topic [advance care planning]. (physician 3) I think it can be a little … with the goals of care … although it’s always intended to be “This is the patient’s wish, this needs to be respected throughout the sector” … sometimes it’s not necessarily the patient’s wish, but there’s a bullishness to how it’s … become dogmatic, “This is an M1” or “This is a C1.” (nurse 5) |
| Renal failure clinic | I’m going to continue to bring it up at every single meeting until we get this document [Goals of Care Designation] because this is just really important for us to know. (physician 3) |
| Cancer clinic | I don’t really give them [patients] a choice. I just tell them “Okay, this is what’s happening. I think if something drastic happens to you — like if you have a cardiac arrest or something serious happens — because of your disease and how terminal it is, my recommendation is that we don’t do resuscitation.” (physician 2) My approach is often to suggest to patients … what they should want in this situation. (physician 3) |