Table 2.

Qualitative Themes from Interviews with Informal Caregivers

Theme	Representative Responses
Avoidance	"I don't want to know. And I told them that right off the bat. No one ever told us much, but when we met with the doctor, it seemed she wanted to reveal to us where we stood, and I interrupted her, and said that I really don't want to, I can't hear that so please don't share that with me."
	“Initially when we first came to MSK, she said she could give us the numbers. And (patient) and I both said we didn’t want to know.”
	"We have not asked a lot of questions about prognosis with the doctors because of (patient's) desire to not really talk about that part."
	"I wish I didn't know so much sometimes."
	“We try to avoid looking at the future; we try to live one day at a time, one step at a time. We know how serious it is but we try not to get too caught up in it.”
	“We treat our life as if despite all of these setbacks that she’s going to live a normal lifespan. We haven’t made any plans.”
	“We were given statistics and we were asked if we wanted to know more, and we both looked at each other and said no.”
Curiosity	“I haven't specifically asked. It's not that we don't want to hear what the worst case scenario is; I think sometimes I don't even know what to ask."
	"I am interested in understanding his prognosis, I believe that information exists, it's just a matter of me sitting down to read and understand."
	“I’d like to be more aggressive in getting information.”
	“When he was first diagnosed I read everything that I could find on his condition.”
Discordant Preferences Prognostic Information	"I have read constantly about the future, but I don't discuss for it with (patient). As far as what I've read online and that sort of thing, I know it's very bad. But we don't discuss that directly with her doctors, I’d like to, but I know he doesn’t want to know."
	"Two years ago we had an appointment with the doctor and we discussed on the way down that she wanted to know how long she had to live. And I disagreed with that, I thought it would have been better not to know. But it's her life, I said whatever you want to do is fine with me."
Hope	“I don’t want to know. And I told them that right off the bat.
	No one ever told us much, but the doctor when we met with her, she seemed to be at a point where she wanted to reveal to us where we stood, and I interrupted her, and I said I really don’t want to, I can’t hear that so please don’t share that with me. We’re hopeful people and we need to believe that there’s hope, and we’re optimistic people and we need to progress with what we’ve got.”
	“We’ve preferred to keep optimism as the front and center, with a lot of prayers backing it up.”
	“I don’t know how much time (the patient) has left. We always approach things, every therapy, with the notion of hope, that it will either control or hopefully cure his condition.”
	“We know it’s bad and we’re really focusing on treating it rather than worrying about it…He’s got a great attitude. And we’re basically taking it day by day.”