Monday, July 9, 2007

Surrogates, advance directives, and decision-making in the ICU and elsewhere

1 picture, 3 related articles, 5 websites, and many thanks:

1)
First is an article about decision-making about life-support for adults without surrogate decision makers in Annals of Internal Medicine. This was a prospective, multicenter, US-based study looking at ICU patients who lacked decision-making capacity, a surrogate, or an advanced directive (data based on prospective surveys of ICU attendings). Of note, the researchers went to great lengths to ensure that their data would be untraceable to an individual patient and physician.

Findings: of 3000 ICU admissions during the study period, 450 patients died and 5.5% of these (25 patients) deaths were of patients without a decision maker. Astonishingly, in 2 of the 7 institutions 25% of ICU deaths were in patients without surrogates. (This made me wonder how surrogacy was defined - it's a little unclear - did it mean only 'legal' surrogates defined by state law or someone designated by a health care power of attorney form? In my state, in the absence of a HCPOA designee, any interested party could be the decision maker. It's usually family but if there's no family it is often a friend or neighbor. I have a hard time imagining practicing where 25% of people dying have no one available to assist with decision making.) In total there were 37 patients for whom the doc did consider treatment limitations, including some for whom the doc would have recommended treatment limitations had there been a surrogate. 28 had DNR orders written; 15 of these had life support withdrawn. 32 of the patients were men. The major finding was that for these 37 patients most decisions were made (or not made) without consulting a 'hospital review' committee (such as an ethics committee) - only 6 of the patients had this (and one more had court involvement). For the other patients decisions were made after consultation with the core ICU team or another attending physician. The researchers also looked at state laws and hospital policies about what to do in this circumstance and found that less than half the time the decisions were made according to those standards (where they existed). Of course the hospital standards varied widely across institutions from no policy, to the attending being able to decide what was in the patients' best interests, to needing 'clear and convincing' oral evidence that a patient would want life support stopped.

The authors conclude "it seems prudent for individual physicians to involve multiple perspectives and disciplines in the decision-making process, such as with a hospital ethics committee," and I whole-heartedly agree. While I have been a steady advocate for keeping the state/government out of end of life decision making (and feel it should be kept out of this area as well) it also seems that given the gravity and likely finality of these decisions involving a group of people outside of one's own ICU team or (likely) chummy colleague is appropriate. Our obligation, always, is to act in the patient's best interests - and this often includes treatment limitations as someone dies - but we all have blind spots and these are the most vulnerable patients imaginable whose voices cannot contribute to defining their best interests.

Thanks to Dr. Dana Lustbader who alerted me to this article & #3 below.

2)
Related to this is a perspectives piece in Annals about the 'false promise' of advance directives. It starts out with words that I really appreciated:

"I attribute [the problems with advance directives] to a fundamentally flawed concept: Advance directives simply promise more control over future care than is possible."

"Advance care planning must refocus from completing advance directives to preparing patients and families for the uncertainties and difficult decisions of future medical crises."

Then, somewhat perplexingly, the author provides a case study in which the patient/doc/and AD foresaw accurately and precisely what would happen to the patient (recurrent aspiration pneumonia), documented straight-forward and reasonable treatment wishes (comfort-only care including no antibiotics), these limitations were based on the patient's own experiences - he had been through this before. And the only reason things went poorly was because the hospital he was at was too cowardly to implement his wishes despite having the written directive PLUS his designated decision-maker saying 'follow the AD.' (Another family member objected to comfort-only care; the patient died on the vent.) So, in this case, what the AD failed to account for was the lack of moral fiber of a hospital's administrators. AD's are often not helpful or not followed because they're too vague and imprecise. Wanting to be comfortable when you're dying is a sentiment most of us will endorse but that doesn't necessarily help your family or doctor when you're in respiratory failure, 'need' to be intubated, might die but who really knows but probably won't really be restored to good health, etc. etc. AD's can't really help with that (unless they say never intubate me no matter what, as this patient's did, and then the issue is AD's being flagrantly ignored). Nevertheless the theme of the article is well-taken especially preparing patients/families for future decisions/crises/changes.

Along these lines Dr. Paul McIntyre, who emailed me about this paper, mentioned there are several project out there trying to accomodate the above reality about AD, particularly incorporating uncertainty about the future and recommended this paper & the following websites which have initiatives based in this model:

http://www.gundluth.org/eolprograms
http://www.respectingpatientchoices.org.au/public/whatisadvcarepub.php
http://www.calgaryhealthregion.ca/carenlife/index.htm
http://www.fraserhealth.ca/HealthInfo/AdvanceCarePlanning/default.htm

Thanks Paul.
(Image is, apparently, of a real tattoo saying "Do Not Resuscitate" - found via image-Googling 'advance directive' - click on image for original post).

3)
Finally the American Journal of Respiratory and Critical Care Medicine has a perspective on the pressure to withhold or withdraw life-sustaining treatments in the ICU. This one shares a couple of authors with the first Annals paper. Upon reading the article's title I first assumed this was going to be an indictment of 'too early' treatment limitations in the ICU. Instead it is a thoughtful overview of the factors at play, the pressures so to speak, that cause clinicians to 'push' for treatment limitations against family wishes. These include physician aversion to uncertainty and preference for 'rapid resolution' at the end of life, physician emotional concerns/discomfort with caring for dying patients, and 'bedside rationing' (intentional or otherwise). It briefly discusses futility and the Texas Advance Directives Act (a.ka. 'the Texas medical futility law'). In discussing futility it warns, "[B]efore taking unilateral action, physicians and nurses should remind themselves that prognostication is imperfect and that some patients will survive if their treatment is continued at families' insistence. In addition, clinicians should appreciate that some families are satisfied when their loved ones live only a few days longer, or if they survive with severe disabilities."

The article is framed as laying the groundwork for future research and one hopes that is the case.

4)
And really finally KQED (the PBS station in San Francisco) has a video and 2 hours of a radio forum on end of life care available on their website (here: links of interest are in the yellow box on the right). Thanks to Judy Conner for letting me know about these.