Table 1

Supportive quotes for themes identified

ThemeDescriptionQuote
Communication with and among care teamFrustration with triage line (after hours care)“it’s very frustrating because I cannot call the oncologist or even, you know, even her nurse… most of the time I am trying to ask her nurse because I know that she can ask the oncologist, but it’s very difficult to get to her, so every time they say that “if you have any questions just call” I go “oh no.” Very frustrating. And sometimes you don’t get a call back at all” (Patient B).
Confusion regarding which care provider to see“I had problems with my stoma—every time they change it, there’s blood—I don’t know if I should go to my family doctor or the guy who did the stoma. Like you know who do you go see?” (Patient D)
Preference for communication with care team about patient’s wishes“Many times, my husband would go with me to the oncologist which is normal. But I was never asked if I wanted him in the room…there were many times where I wanted to discuss things by myself without him there and I was never asked” (Patient I)
Relationship with oncologist and cancer teamImprovement in relationship with oncologist“The oncologist has since made good about telling us about other things that are out there and responding to some other things that we brought to his attention … immunotherapy and clinical trials and genetic testing for markers and tumors and those sorts of things. So between our efforts and his efforts, which have been really good in the last couple of years…, that’s how we’ve obtained further information” (Caregiver A).
Role of the family physicianDifferences between the role of the Family Physician and oncologist“it’s sort of a specialized care and once he [family physician] knows for sure that we're in the right hands there’s really not much that he can do that a specialist couldn’t do sort of thing …he’d be the one to sort of adjust medications or add or take away depending on you know what’s happening with general health. But as far as cancer treatments—well the person who sits in the driver’s seat is the oncologist” (Caregiver E)
Meaning of palliative careCare teams need to explain palliative care to patients“I’m just going to say when people say palliative care… when it’s a doctors and nurse you know, in some cases, maybe have to take the time to describe what that actually means. Because I think there is a maybe a scary connotation to the term for some people” (Caregiver B)
“no one has explained it to me other than saying you know once you stop treatment, you’ll go to palliative care. That’s as far as they have said.” (Patient I)
Patient and family engagement in carePatient identifies ways they have maintained their autonomy and engaged in their care“I just write down questions, related questions that don’t take up a lot of their time … because it makes me feel like a participant in my care so it feels like I have some kind of control…I remember when they first offered me chemo …and it seemed irregular as to why they were offering it to me …and I said I think I will say no because I don’t want it because I was gonna lose my hair and hands and I didn’t want to lose my hands because I would lose my independence and my life would change drastically. So, I turned it down but felt power that I turned it down and had made a big decision” (Patient C).
Caregivers as advocates“even though we were communicating that this pain is pretty bad and I’d go with her to every appointment, so even when she downplayed it, I would make sure that the nurse and doctor understood it’s bad, bad enough that she can’t get out of the bed most days. We waited until like literally a month ago to have a meeting with the pain team at the hospital and I’m really confused as to why that would happen” (Caregiver B).
Patient found checklist useful“I’ve filled it out many times… I did get a call back from the hospital once or maybe twice, which was very reassuring because I knew that somebody was actually looking at it” (patient C).
Checklist is not enough to capture patient symptoms“I think it’s more quantitative than qualitative…To me it doesn’t really say a whole lot. You can’t explain what’s going on.”
Readiness for advance care planningNeed to feel ready for Advance Care Planning conversations“probably not until it’s actually necessary. I know that sounds terrible, but I don’t know if I could deal with it right away…I think it’s one of those things that information can be provided and when I’m ready, or you know at least provided to my family.” (patient H)
Access to carePreference for phone appointments“chemo treatment is not really fun so she’s sick a lot of the time. It would be a heck of a lot easier for her if she didn’t have to you know get in the car and drive across town to the hospital and sit in the waiting room for you know for half an hour, 45 minutes. I guess I’m curious why is it not feasible to do little things over the phone.” (Caregiver B)