Wednesday, January 14, 2009
Annals of Internal Medicine recently published a research paper looking at how family members view the interaction of hope and truth-telling regarding critically ill ICU patients. It is based on a prospective cohort study at a single medical center in California, and involved interviews with surrogate decision makers (N=179, mostly close family members of patients, 61% were white, 70% women) of 142 intubated ICU patients. Interviews occurred on between days 3 and 5 of mechanical ventilation. Among other things, family members were asked specifically if they thought physicians should avoid discussing prognosis in order to maintain hope.
Most of the results are qualitative. The major quantitative result is that 93% of family members endorsed the idea that not discussing prognosis was an unacceptable way to maintain hope. This is not to say that they thought that discussing prognosis didn't effect hope (they didn't quantatively assess this) - just that the need for physicians to discuss prognosis with them was so important that hope considerations shouldn't preclude it. The bulk of the article presents a thematic summary of why the family members thought discussing prognosis was important: mostly things one would expect - helps them prepare emotionally and logistically, it's a core physician obligation/helps family members make decisions, doesn't impact 'outside' sources of hope (faith), etc.
All good, but my major question was what about that 7%? Unfortunately we don't learn much about them (which is fine, and what I personally care about reading this paper may not have been what the authors were particularly interested in). About half of that 7% were ambivalent about prognostic disclosures simply because of the emotional impact. The other few seemed to endorse the idea that discussing something will make it happen (discuss prognosis-->people give up-->patient dies). That's about all we learn.
Overall the research is consonant with numerous other studies showing that patients overwhelmingly want to discuss the future with their doctors. (At least when you ask patients in a research setting they say Tell me everything - this study however gives an interesting twist to that finding, suggesting when you push on beyond that simple question some patients are much more ambivalent about exactly how much they want to know). Anyway - this study supports that the vast majority of family members as well seem to say the same thing: tell us, we want to know, concerns about hope don't preclude the need to talk about what to expect.
My favorite quote from the study was towards the end, in which they were discussing how family members want to hear about prognosis, and that most don't want to hear unequivocally bad news, and that iterative approaches (letting it trickle out a little bit) are welcome. A family member is quoted as saying: "I think it's best done through multiple communications. A bomb on 'em once...is not gonna help anybody." In my program, we call the 'bomb' 'The Hammer' and constantly grabble with and discuss as a team When, How Many Times, and How Hard do we 'bring down The Hammer' in having these discussions....