Surrogate decision making; end-of-life "minimum data set"

Happy New Year! 

Two from a recent Journal of the American Geriatrics Society:

1)
First is a look at how surrogate decision-makers approach end of life decision making.  This was a structured, qualitative study of 50 surrogate decision-makers for elderly veterans that came out of a larger advanced care planning study.  Some interesting, although not surprising, findings:
 
A)  As the table below shows, most people had discussions with their loved ones because they were in the study (or, to be fair, serious life events seemed to have triggered a lot of these conversations).  Note, however, that physicians did just as good as (no worse than? just as bad as?) lawyers (!!) in triggering these conversations--six percent.  This is shameful.

Motivation for Discussion	n (%)*
Study participation	13 (26)
Loved one's condition serious/could worsen	11 (22)
Loved one's hospitalization	10 (20)
Illness or death of others	9 (18)
Age/stage of life	4 (8)
Discomfort not knowing patient preferences	3 (6)
Attorney raised the topic	3 (6)
Physician raised the topic	3 (6)
*Several surrogates identified more than one factor that had motivated discussions; thus the total percentage was >100.

B)  To put the above grumblings in perspective, however, this study furthered the idea that these 'advanced care planning' conversations with loved ones aren't necessarily a panacea.  About 2/3 of surrogates said they actually did or would base their decisions on those conversations, and it appears those conversations (or written wishes) were general, and vague, and probably inadequate to offer much in the way of specific decision making guidance.  E.g. the patient wouldn't want to be a 'vegetable' (if any of you know someone who would want to be a 'vegetable' please let me know).  Instead, many of the surrogates said they did (or would) base their decisions on shared life-experience with the patient-- an "inner-sense" of what the patient would want--or, frankly, they would base their decisions on what they (the surrogate) thought was best for the patient ( i.e. substituted judgment be damned).  I have to say that these latter practices seem to me to reflect what usually happens when surrogates make decisions.  Except for patients who have strict pre-defined treatment limitation directives (DNR/DNI, no feeding tube, no dialysis, etc.) and the medical decision that needs to be made happens to involve those treatments, advanced directives (written or spoken) are necessarily too vague to actually guide the surrogate.  Instead, then, the surrogate bases their decision on something more nebulous--a sense based on their relationship with the patient about what s/he would want.  In addition, many advanced directives (I'm using the term loosely here meaning both written AD's and more informal conversations) are along the lines of "when it's my time to die I want to be made comfortable and not have things prolonged artifically."  All very reasonable--again, show me someone who, when it's their time to die, wants to spend those precious moments in an ICU.  The problem here is not that surrogates can't/won't honor those wishes, it's that physicians aren't there to tell them when it's time: 

     "[The patient] is dying, and based on what you have told me, I think she would want us to focus her care on comfort right now." 

As well intentioned as the AD movement is, this, and not making elderly couples have more explicit conversations about under what exact circumstances they'd want X, Y, & Z medical treatments, seems to me to be where the real benefit to patients would be...

The authors also quoted a surprising statistic:  ~75% of patients hospitalized with life-threatening illnesses have a proxy making their decisions (the reference for this appears to be a subanalysis of the SUPPORT trial which I guess means that 75% of ICU patients require surrogate decision-makers since SUPPORT only looked at ICU patients). 

2)
There is also a proposal for an international " minimum data set" to measure the quality of end-of-life care for older adults.  This is an intriguing idea and one that could really add a lot to improving care of the dying--particularly in identifying what groups we (physicians, health care systems, insurers, policy makers, etc.) are missing when it comes to providing good end-of-life care. 

3)
And finally, there was a recent review in Annals of Oncology about predicting prognosis in advanced cancer.  It focuses on the palliative prognostic score, palliative prognostic index, and other similar scales that have been developed.  Nothing earth shattering here, but a helpful resource summarizing these scales for those of you who are interested.