Table 3.

Key Themes among Participants and Key Patterns of Responses among Participant Groups

	Representative Quotations
The process of forming expectations
Limited ability to predict potential future states	It’s kind of hard to imagine . . . it’s just something that you have to be there and actually experience to know the feeling.
Avoidance of future-oriented thought	I don’t really imagine anything of the future I face . . . . We don’t know when we’re going to die.
Reliance on past experiences to formulate expectations	. . . with my dad they had him on a ventilator until all of us kids got there and we made the decision to take him off it. And he still lasted a week and just watching him, that was the longest week of my life, just watching him. So that really made me make sure that my husband and my sons all knew don’t put me on a machine and have me lie there like that. I don’t want that.
Reliance on spirituality to form expectations	You can’t picture the future or imagine the “what if’s.” It’s not there for you to choose the “what if’s.” As far as picturing it you don’t even picture it . . . . You’d be praying to the Lord up above to bring them out of this. But it’s always going to be His way, the way He wants it.
The content of expectations
Potential impact of illness or treatment on family	I wouldn’t want to put anybody through what we went through with my brother . . . . I was with him every single day except two days from the time he was in the hospital . . . and it was exhausting and everybody starts getting cranky . . . and I wouldn’t want somebody to have to [go through] that for me.
Imagined intolerance of treatment itself	[Regarding repeated imaging for a lung nodule:] That would be aggravating having to keep coming back, coming back and doing the same thing over and over and over and over.
Loss of self, including of the caregiver role	[My mother’s] presence will be gone and it will be a void for a while. I can imagine a void.
Maintenance of positive emotional state regardless of outcome	It could always be worse than what it is and I’ve seen people in worse situations . . . so I still have to count my blessings.
Discussion of avoiding death as the dominant consideration	Am I going to live or die? That’s the most important thing.
Discussion of quality of life and suffering	To be on a ventilator, you’ve got to be confined to a bed, whether it’s in your home or in a nursing home, but you can’t get up, you can’t smell the flowers, you’re not outside, you’re not getting the sun. That’s not living.
Discussion of hope among potential surrogates of patients with advanced lung cancer	I always try to look at the positive and I try to have a lot of hope. I really probably wouldn’t see the [downsides to aggressive treatment].