Table 1 Qualitative Interviews: Themes Identified

Emotional reactions to diagnosis

Some Participants highlighted uncertainty and stress leading up to their diagnosis and following the investigative testing

“I was quite devastated actually. And especially when the doctor tells me to, “Get your affairs in order” and Stage 4 lung cancer is not something that is survivable; it is terminal. And yeah, so it’s been a bit of a challenge that’s for sure” (patient 1)

Current Supports

Early supports mentioned by participants as important were information on resources and services that are available to patients, symptom management, social/emotional support, and information on what to expect in cancer care and treatment

Some patients were already seeking out certain supports such as online support groups, exercise programs, and smoking cessation programs. One patient mentioned the need for transportation to the cancer center, and another patient mentioned that home support, such as with meal preparation, would be helpful for patients. Participants mentioned that having access to social support, whether informally through their friends and families or though formal support groups, was vital for patients

“Now, I had a whole bunch of questions on things like how could I – things like sleeping, you know. What are the tricks that could get me to sleep? What about my appetite? And what type of resources would there be to kind of have a more positive outlook? What kind of support out there? Is there anybody out there like me that I could talk to? All those kinds of things, I could have used those right away.”(patient 4)

“I don't know what I would have done without her [clinical social worker] contact. It was just so helpful…she was telling [me] what days my testing was back, when I could expect to hear, things that are really, really critical in those initial days. I don't know what I would have done without that because, as I was saying, nobody at [the cancer centre] was calling me back.” (patient 2)

Perceptions of an automatic referral process for palliative care

When asked about their thoughts on the automatic referral process, patients were supportive of the idea, and highlighted that many early needs of patients could be met with such a program. For instance, a phone call following a patient’s diagnosis could help in guiding future decision-making

Patients also highlighted important components of the phone call necessary to communicate with patients. For instance, one patient described the need to frame and explain the call as part of the cancer care plan

One challenge raised by some interviewees was that some patients may feel overwhelmed and may not feel they need a palliative care consultation right after their diagnosis:

“Having the opportunity to talk to a doctor or a nurse one-on-one, right, you having supportive care is very important and it means a lot to people… Now chemo, I didn’t know exactly what it was because this was my second tumor, and it was very painful both of them… she called me one day and she said, “It’s worth a talk” so that gave me a second thought right there ‘well maybe there is something good’ because I didn’t look up chemo until I was right in it.”(patient 8)

“I would want to know, first of all, how did you get my name. So, I think I'd want somebody to say, so as part of the process, if your oncologist didn’t have the chance to tell you, we are a follow-up call to check in with you. We’re here to provide supportive connections, answers, people that you can access.” (patient 5)

“I think the only challenge would be that a patient might not be as receptive to it, or they might not be in a place yet where they’re receptive. But even if the outreach was made and then there was information given that if the patient felt ready. I also think like a gentle follow up would actually – for patients who didn’t sort of initially bite, I think that would be really important as well, because there’s so much going on when you receive that kind of shocking diagnosis. It really is like a PTSD, frankly." (patient 2)

“Maybe don’t even use it [palliative]. I don't know. If you have to, maybe not in the first phone call. Maybe you could use it in a subsequent phone call, once you’ve explained what it actually is.” (patient 3)