Wednesday, July 2, 2008

Surrogate decision making sanity

Annals of Internal Medicine has a discussion of surrogate-decision making that echoes (in a much more organized and erudite way) some of the murmurings we've made on the blog before about surrogacy, advance directives, etc.

The discussion posits the standard/orthodox view of surrogate decision making. A simplistic summary of this is that a surrogate's role is to make the decision that the patient would make if he or she was able to, based in some prior knowledge of a patient's values/wishes/wants if scenarios X, Y, or Z were to occur. In reality, (reality meaning what patients and potential or real surrogates actually reveal in research studies about how they want decisions made), surrogates do a generally poor job of predicting what patients would want (even if they've discussed it or there's a written document to that effect) and patients/surrogates don't seem to endorse the entire 'substituted judgment' standard in the first place. That is - the standard model of surrogate decision making doesn't work as its supposed to, and many patients don't really want it to work that way, anyway. A quote, italics mine:

Nevertheless, research suggests that patients, surrogates, and even their physicians often operate independently of these standards. For example, despite the formal recognition of the primacy of patients' stated wishes, there is growing awareness that patients do not value or even define personal autonomy uniformly. Moreover, many patients do not necessarily want their surrogates to adhere to their specific treatment preferences or to follow the standards in sequence, but instead wish them to respond dynamically to actual clinical situations in order to maximize their evolving, contemporaneous interests and to make judgments that integrate both medical and nonmedical considerations. One nonmedical consideration, for example, is that many patients consider placing trust in their surrogates more important than assuring their surrogates' ability to accurately predict the patient's own decisions. Some patients modify their preferences to accommodate their family members' concerns, and some give weight to the distress they anticipate their family will experience from unavoidable choices.
The 'alternative' model here being one of people caring about a process of decision-making (placing trust in a loved one, etc.) rather than pre-ordaining what those decisions should be.

Another quote on the vagaries of advance directives:
For example, the statement "I never want to be fed through tubes" made by a now-incapacitated patient would require an interpretation of the phrase "to be fed." Did the patient mean only ongoing and indefinite support, or time-limited or goal-directed nutritional support as well? Ostensibly clear wishes that, in fact, require interpretation are at a point on the continuum somewhere between known wishes and substituted judgments.
For every patient I've met who's wishes were clearly consistent with a DNR/DNI order (and were full-code because no one had bothered to ask), there are ones whose families are struggling with their statements about 'not wanting any tubes' or 'not wishing to be hooked up to life support.' Did they mean never, under any circumstances? Or just when it would likely maintain them in a permanently incapacitated state, or prolong dying, or in some other way be non-restorative? Or patients who wrote (or checked the check-box on some forms) "I want cardiopulmonary resuscitation" or some similar variation. Always? Under all circumstances? When their physicians strongly believed it would not save their life and only prolong their death by a few ugly minutes or days? By writing that did they intend to communicate to families: "it is my intention that you ensure that I die ventilated with someone pushing on my chest no matter what"? Advance directives (as many of them exist) and even 'talking with your family' often can't fix these problems. Almost no one (...almost!) wants to be CPR'd to death, or to die on a vent, and these terrible decisions often come down to identifying when someone is 'really' dying, when these interventions are 'really' not going to help, to nurse families through the process of knowing when enough is enough so to speak. I.e. the real decision is not whether or not to perform CPR (or whatever) but whether or not the patient is 'dying' (or has reached some point of sufficient prognostic certainty and gravity).

I'm rambling here, to be sure, and to be expose myself a little here I think I'm working through my own lived experience, as a young clinician, of how families actually make these decisions (which is usually wisely and with love and compassion, however the burden of these decisions can weigh heavily on them, even with strong physician guidance/recommendation) and how advance directives so rarely seem to clarify things - and so it's good to see these issues addressed in such a public way....

There are good ethical/legal and regulatory reasons to be sure to have named a proxy decision-maker or makers (i.e. formalize at least one part of that process mentioned above) as well as to 'officially' give those decision makers some sort of empowerment to say 'No' (particularly given the evolving situation in the US regarding what's required to stop artificial nutrition and hydration in some circumstances). There are some patients (although I'm convinced it's not many outside of those in the final months of life) who do genuinely wish to have straight-forward/no exceptions/no-question-about-it treatment limitations (the COPD patient who knows what it's like to be intubated and has decided never again no matter what, etc.) - documenting those wishes meticulously is obviously a good idea.

For the rest of us, who wouldn't want antibiotics, dialysis, chemo, ventilation, CPR, tube feeds if they weren't going to help restore us is some way, I can't see a way that advance directives are going to fix the problem of alleviating our loved ones of the burden of deciding when it's that time or not. Physicians and other clinicians can help alleviate some of that burden, although not all, but part of me thinks the difficulty of these decisions is healthy and appropriate to the vagaries and uncertainties of medical care for the seriously ill. Thinking about myself and what I'd want and not want - it all depends on the likelihood of interventions working. Hell I'd take an LTAC under some circumstances - but I'd also want my family to be able to say No, to be guided carefully on that, and (from the privileged position of being a physician) there are certain colleagues I'd want involved in the process - their input on what would likely be restorative or not. Again, it's a process of decision making involving trusted people that'd be important to me, knowing of course that I've already established with them general permissions to say No, to not prolong death or maintain me in a state of permanent mentally incapacitated disability....

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