Friday, December 12, 2008
Cancer has a study looking at cancer patients' preferences for quality vs. quantity of life. These data (which come from a larger, ongoing controlled trial involving a decision-making support intervention) come from ~450 patients with metastatic cancer (unfortunately not a very representative population: median age 60 years, 91% white, 70% with some college education) and were gathered at the time of their initial visit with a medical oncologist. They were asked how they value quality of life vs. length of life (e.g. QOL is all that matters, QOL is more important but LOL matters, LOL is more important but QOL matters, LOL is all that matters). Findings were relatively straight forward: most patients viewed QOL as more important than LOL (15% said only QOL was important, 65% said more so), with older, more educated, and white patients trending more towards QOL than others.
What they then did was (after adjusting for baseline characteristics) look at how QOL vs. LOL related to psychologic factors and patients' stated preferences for physician communication style. Patients who rated QOL as most important reported significantly less psychological distress (as measured by the Impact of Events Scale - a PTSD screening tool) than those who ranked LOL as most important. Additionally, the 'LOL+' patients were more likely to say they wanted their physicians to speak more positively, to soften bad news, and to speak generally rather than specifically. These were modest, but statistically significant differences.
This is additional research fleshing out what has been observed clinically for a long time: fear and distress drive decision making, readiness-for-frank-communication, etc. This reminds me, to an extent, of some of the Coping With Cancer Study findings - knowledge (or at least acknowledment) of having a terminal illness was not associated with increased rates of 'bad' psychologic outcomes - however of those who had a lot of fear/terror, those who acknowledged being terminally ill were worse off than those who didn't (rates were the same, magnitude was worse in those who 'knew').
The big question, clinically, is what can we do about this to prevent it or alter it - i.e. to nurse those patients who are afraid, clinging to 'LOL' to a place which is more like most of their neighbors who for whatever reason are quite different - not as afraid, able to contemplate alternatives? Part of this is can we do anything or are these relatively deeply ingrained personality/coping styles which aren't and shouldn't be changeable? For me this is both a therapeutic question (can we even do this?) as well as a moral one. Should we be trying to do this? Is peacefully accepting your mortality a good thing - a morally superior outcome? I think it is for me, and there's evidence that acceptance of your death improves your quality of life as you die - and certainly helps your bereaved relatives (check Coping With Cancer again). But some people don't want to go gently into that good night, and as I sit there with these patients, suffering, frightened, mad as hell about what's going on, clinging to any sort of hope that the inevitable isn't inevitable, who aren't interesting in walking through any of the doors I open for them (i.e. treatment plans designed to ensure they don't die on the side of the highway as they make a final run for their 4th 2nd opinion) - you have to acknowledge to yourself that perhaps dying trying for these patients is, in fact, dying well.
To answer my question above, I think that yes of course we can do this - via emotional and cognitive/medical decision making support - help many of these patients 'accept' what's happening sufficiently to allow appropriate terminal care planning - if we didn't I don't know what I'd be doing all day. I guess what I'd like to know more about is what exactly is it about what we do that is successful for so many patients - and why does this fail for a few - because it's those few who it seems to me suffer the most, as well as challenge us clinically the most (emotions, time, effort). If I could know from the get-go who I was going to be 'successful' with then I/my team could spend our time more effectively, and try to work out 'successful' end of life care for those few patients who are 'unmovable' without trying to move them...
Neal J. Meropol, Brian L. Egleston, Joanne S. Buzaglo, Al B. Benson, Donald J. Cegala, Michael A. Diefenbach, Linda Fleisher, Suzanne M. Miller, Daniel P. Sulmasy, Kevin P. Weinfurt (2008). Cancer patient preferences for quality and length of life Cancer, 113 (12), 3459-3466 DOI: 10.1002/cncr.23968