Thursday, September 27, 2007
Just one topic today!
Archives of Internal Medicine has an article about medical decision making for patients without surrogates (people without family or friends who are able to make decisions on their behalf). It's mostly about computer-aided decision making support based on patient demographics - something I blogged about before but never thought I'd hear more about (that article shares an author with the current one). This is how the authors describe it:
"For example, a physician faced with the choice of whether to intubate an 80-year-old man with dementia who develops respiratory failure, and lacking evidence of his preferences, would enter variables that may include the patient's age, sex, and diagnoses and the proposed intervention. The treatment indicator would estimate the likelihood that this patient would want the intervention based on analysis of a database of treatment preferences of individuals who share his characteristics. If this analysis indicated that most individuals with the patient's characteristics would prefer to be intubated, intubation would be performed; if it indicated that most would forgo intubation, it would be withheld."
The authors go on to describe further how it would work as well as the ethical & legal implications of such a system. While my initial and continuing reaction to this is that it's nuts, the authors make one very compelling point:
"Given that surrogates predict patients' preferences more accurately than physicians, it follows that a population-based treatment indicator would be more accurate than physicians and other decision makers for incapacitated patients without surrogates."
That is, evidence shows that physicians (and presumably courts) are a relatively poor judge of patient's wishes, and so if we can provide something which is shown to be more accurate than physicians, why not use it even if it is a computer program?
I've been trying to figure out what I don't like about this, and I think it's three-fold. First, I think it's somewhat of a folly to base such things on research asking patients what they'd choose in situation X. It's too artificial; each individual clinical situation is so unique that what people say they'd want in a survey may not accurately reflect what they'd actually want when they're in a similar (but real) situation. You can't pre-plan things: it takes sitting down, talking through the specifics of the situation/options/values/goals and going from there. This is the problem with advance care planning in general (at least insofar as ACP is envisioned as a patient documenting 'when I'm in situation X I want Y'). This gets to my second concern which is that this is a positivistic folly - that we can predict the future and predict people's responses. (On the other hand the authors would say that that's true however they can make a system that is better than physician judgment so why not use that?)
But my major concern is something that the authors themselves bring up - it's an idea that has been squirming around in my head for a while but I've never been able to verbalize it - and that's the idea that the decision making process itself may be just as important as the decision made (they're sort of the same thing). They note:
"One consideration is that patients may have preferences not only about treatments but also about the process of making treatment decisions."
They go on that for some patients what would be of the most importance to them would be, for instance, that the physician made the decision that they thought was in the patient's best interests. The process of decision-making (physician making a judgment about what medical care was in the best interest of the patient) as more important than pre-specifying the decision to be made (in situation X do Y). This reminds me of many of my patients who when I try to bring up planning for specific events (e.g. dying when I'm talking about code status) say "Oh my wife will make the decision at the time" or some variation thereof. For them the process (wife making decision based on immediate clinical situation) is more important than, again, pre-specifying the decision. (There is an element of trust here to be sure, which doesn't apply to some patients.) I've long suspected that the framework we have about these topics ('substituted judgment,' 'patient autonomy') frequently aren't applicable to (or even descriptive of) how decisions are actually made, and that that's not necessarily a bad thing, if the process is right. That's probably the most organized my thoughts about this are going to get tonight; please leave comments if you have any further ones (or if you want to call me nuts).
However I will take this opportunity to break my promise of a single topic and add some more to this post...
Salon has a piece about fMRI and consciousness and the new research that is coming out about how some people in persistent vegetative states show (fMRI) evidence of consciousness (supposedly). I blogged about this here & here. This is a much more cogent and well-informed discussion of the topic than I have been able to provide and I highly recommend it for anyone who frequently works with people in prolonged states of unconsciousness or is interested in the ethics of withdrawing life-prolonging medical care in those situations. It's a must-read. This sort of technology is here to stay, and while neuroscientists are figuring out what this all means, we will be answering more and more questions about it to our patients' families (many pundits opining about the Schiavo case were calling for fMRI testing to see if she was 'really' in a PVS)....
And on a lighter note this piece states that there are probably 'tens of thousands' of patients in the US in PVSs. I was at a conference once honoring the (now late) Dr. Ronald Cranford who took credit for that figure - he said he made it up once in an interview (it was an educated guess but really based on nothing more than his gut sense) and it has now passed into the vernacular, so to speak. If anyone knows actual real data to contradict or support this, let us know.
Image is from the website of some researchers in this area.
Salon is free if you watch a brief ad.
Thanks to my brother Luke Rosielle for letting me know about this.
And while we are indulging in vaguely funny things I was rather astonished tonight when Palladone was briefly referenced on the season premiere of The Office.