Table 3.

Illustrative examples of communication roles

Role	Example
Advocating	The first rehab they put him in, he lasted five minutes. He just went totally emotional…it was like, “You have to get me out of here”…I sat with the staff and I said to them, “I’m taking him home. I have taken care of him in a worse condition than this. You show me how to do the tubings and I’m going home because I was not going to have him be emotional like that. That’s crazy.” (Caregiver 9, wife)
Facilitating	He had absolutely no idea that he was dying. And so it was really hard for me to try to have those conversations because he didn’t wanna hear it – “I’m not dying.” (Caregiver 18, wife)
Liaising to other groups	He’s very close to his family, they’re wonderful people. But he never let them in as things were declining so I had to call them and say, “He’s dying,” which came as a tremendous shock to them [crying]. (Caregiver 2, wife)
Providing emotional support	Jim was not the same man. He was more quick-tempered. He was a very laid back kinda guy and he would start yelling at me. And I would say, “I understand that, and I don’t take being yelled at well, so I understand that you are going through a lot, but I am, too. I’m going through this with you.” (Caregiver 3, wife)
Decision-making	The decision for the clinical trial was his decision. I don’t know. I certainly didn’t say to him, “But, Sam, this is gonna be difficult.” Although, Dr. X said these things to him…So those decisions weren’t difficult…[F]or the second hospitalization, I did say to him, “Sam, can you withstand anything else?” I do feel there was that part that was hard for him to say – I feel, I almost forced him into that. (Caregiver 2, wife)
Coordinating	We didn’t have a ramp to get in the house. We didn’t have a hospital bed. We didn’t have 24-hour care yet… So there was a lot of stuff we needed and it took a couple weeks to get that and so he wound up in rehab and his will just went at that point. (Caregiver 10, wife)
Information gathering	Caregiver: I’m a planner. So I needed to know what I was going to be up against toward the end. I needed to give myself enough information to be strong throughout that process.
	Interviewer: So this was not something that the care team provided you with?
	Caregiver: No. No. No. Not even hospice [services]. Well, hospice I guess…But for the year, I felt like I was pretty much on my own. (Caregiver 13, wife)
Information sharing & interpretation	[I]t’d get frustrating at times because they [care tea] might be talking to her and she doesn’t understand. I could see it in her face, and if I tried to jump [in to help explain]…[care team members would say] “No, no, no. I want Sarah to speak.” And it’s like, “Yeah, but I can see in her eyes that she doesn’t know what you’re talking about.” (Caregiver 1, husband)
Gatekeeping	Physical: He did not want a farewell tour. He was not seeing anybody who was not his best friend or his family. And then people would just drop by… [I needed] to tell people gently, but firmly, “No, you can’t come and see him, he’s not seeing people”…It was [hard] managing other people’s expectations of what they thought Bob should be doing, in terms of seeing them and stuff like that. (Caregiver 11, wife) Informational: I think it would be important for at least the caregiver to get the information first and then the patient. So using my situation, I was almost afraid to have hospice [services] put in conversation with Sara from a stranger. But it would have been nice if I was communicated those options or how to go about it, which I really wasn’t, unfortunately. (Caregiver 1, husband)