TABLE 2.

FAMILIES' REASONS TO DISCUSS PROGNOSIS IN THE FACE OF UNCERTAINTY

Reasons to Discuss Uncertain Prognosis
Theme
Examples
Prognostic Uncertainty Is Unavoidable, but Acceptable
Uncertainty is inevitable
“Well, I think everybody always goes with the premise that nothing is set in stone. Like, you know, the way things are, you never know, so that's why … like I always think the doctor should give prognosis … what they think. But, what he thinks and what actually happens could always be totally different.”
“Well, he can't … he can't know … he can't predict the future. He can have a very good idea of what's gonna happen, but he doesn't know, one-hundred percent, until it happens.”
Doctors are a valuable source of prognostic information
“I think that the doctors are far more educated and professional than the average lay person. And it's like having an inside track on a horse race. If you know that the winning odds are such'n'such, then you're more apt to bet heavily on that particular horse.”
“As a patient, I think it is not very responsible if the doctor is unwilling to give prognosis, because there's no way the family know.”
The Value of Even Uncertain Prognostic Information
Prognostic information allows families to prepare for possible bereavement
“But I do think that, you know, I would want a prognosis. I feel like I would want to know what's going on. ‘Cause it also helps you prepare, too. If the prognosis is good, or bad, it helps you prepare, either way, mentally. And … you have to be, I guess, tough, you know, for any kind of situation like this.”
“Just because it's warning …The way I see it, it's warning you for what could happen. And even though they're not sure, they should mention it to the family. You know [by saying] ‘We think …’ they're not assuring that that's exactly what's gonna happen, but they are just letting the family know what could happen.”
Prognostic estimates allow families to make decisions
“At least give them what may have led them to this and the possible diversions that may lead to a different prognosis, I think, would … give me the knowledge that I would need to make any decisions, a ‘know where they're at’ type of a thing.”
Families can hope for the best, prepare for the worst
“You plan for the worst and pray for the best, because if you're ready for the worst, anything other than the worst is ‘Yea!’”
Sharing information fosters trust in doctors
“I would assume, if the doctor's not sure, then he would tell me that. And tell me that, you know, ‘This is what we're looking toward. This is the direction we're going. And … and we don't know for sure.’ I would respect that much more.”
“If they could admit that they could be wrong … because not everything is known in the medical field … And not everybody's perfect [chuckle] … I would trust ‘em more.”