Table 2.

Decision Making

Thinking about when you got sick with your [DIAGNOSIS], can you tell me what you were thinking when you decided to have surgery?
Patient perception of decision for surgery
No choice	“I don’t think I decided at all, I think they decided for me. I had a perforated bowel, so I was leaking into my, the rest of my body, so that’s never a good thing.” -68YM “Well it was, really there was no way I could not have surgery. It was something that I didn’t really get a yes or no on because if I didn’t have surgery, I would have died.” -75YF
Value prolonging life	“… everybody loves life, so if it’s a chance that that wasn’t the end all and be all of my life then I would like to live.” -67YF
Barriers to participation in pre-operative decision
Acuity/emergency	“I don’t think anything, as I said it happened, by the time they operated it was I think midnight or close to it and we had to move fast I guess, so I don’t think there was anything different they could have done.” -80YM
Symptom burden	“I had no choice, I was in constant pain with my stomach not able to move my bowels… and nothing helped me…And so they put an NG [naso-gastric] tube in, probably the worst thing I’ve ever experienced in my life.” -65YF
Confusion	“… between the time I got to the emergency ward and the time that I decided to have the surgery, I wasn’t thinking too clearly. I was in kinda a fog. Uh a young man, a doctor as far as I know, he sat down with me and went over all of the possible side effects that-that could occur because of this surgery… you know I had a serious problem uh that-that the staff was recommending have the surgery and even though the side effects they described sounded pretty bad, I decided to go ahead with it anyway.” -78YM
Emotions associated with in-the-moment decision making
Regret	“I wish I had gone to hospital sooner when I would start having cramps because I was having cramps for about a week before I ever went to the hospital. Maybe if I had gone to the hospital sooner about the cramps I was having and problem about not having a bowel movement then maybe it wouldn’t have happened that way. So I think partly, part of it was probably my own fault for not going sooner.” -75YF
Fear	“Cause I was scared to go to go um under and through all that stuff again, but um like I said, the doctor, I don’t remember his name, but he was awesome, he came in and talked to me and I cried and cried, and he talked to me and I cried and cried, and he told me not to worry cause you know he’d do everything, that you know, I’m in the best place, which I believe, it’s true.” -68YF
Desired outcome	“I just wanted it fixed and they fixed it.” -66YM