Tuesday, January 10, 2006
December's Journal of Pain and Symptom Management has a piece examining concordance between patients' and surrogates' understanding of end of life wishes. This is a large study for the field, involving 92 hospice patients and their surrogates (mostly spouses/partners or adult children). Both were asked extensive questions regarding end of life wishes (goals, hopes, concerns, priorities, etc). Agreement between patients and their surrogates was generally poor; among other findings most surrogates misidentified most patients' top priorities.
These are the general findings, but I'll warn you that this study generated mounds of data & one really begins to wonder how best to interpret them. I'll elaborate with a little research methods/epistemology detour. 31 end of life 'preferences' were measured for the study (everything from 'pain under control,' to 'time [spent] with pets,' to avoiding 'ventilator/dialysis to prolong life.'). If the fundamental question being asked is 'how good are surrogates at knowing patients' end of life wishes?,' how does one go about interpreting the data generated from these 30 questions? Is 50% concordance between answers to the survey "good"? 75%? 90%? Who decides? How do we decide if 90% vs, say, 50% concordance between surrogates and patients is a meaningful difference upon which we should act to improve the quality of of end of life care? And does it make sense to weigh all preferences equally? Is 'time with pets' equally necessary to "good" concordance between surrogate & patient as "say goodbye to loved ones?" Probably not. That is why the authors looked at agreement between what patients and surrogates viewed as top priorities.
I am not pointing this out to criticize the study; in fact the authors are quite upfront about these problems in the paper, and there's not like there's some standard out there they can turn to. What I do think is tough to justify 'scientifically' though is that the authors decided to define concordance as agreement within 1 point of 0-10 scale (in the survey the participants rated how important they thought something was on a 0-10 scale). So if someone rated 'dying in place of one's choice' as a 9/10 in importance but their spouse rated it a 7/10 the spouse's response was considered not in agreement. This seems arbitrary and tough to justify. Obviously the authors needed to pick a cut-off somewhere, but their findings would have been even more compelling if they showed their findings were valid even using different cut-offs.
Nevertheless the overall mediocre concordance between patient and surrogate throughout the study was so consistent that the 'big message' from the study resonates loud and clear: don't assume surrogates understand patients' wishes. As a bright note, however, the authors found that concordance between patients' and surrogates' answers was significantly improved if 1) the patient thought the surrogate actually knew their preferences, and 2) the patient reported talking with surrogates about treatment preferences. Seems obvious, but in fact this is not necessarily so given that all the rest of the study's findings demonstrate people don't understand loved ones' wishes as well as they probably think they do. So it's encouraging that we actually have some evidence to say if people actually talk about this, understanding is improved. The other 'big message' then is a reminder to us clinicians to facilitate these discussions.
(There's also an article looking at a Taiwanese population, finding that families' end of life preferences for patients are usually more 'aggressive' than the patients' own wishes.)
New PC-FACS are out. My prior comments stand: superb, wish they were free to all.
I'll be blogging about a couple other pieces of Decembers JPSM later this week.