Conformed Consent

Yesterday in a conversation about ethics a turn of phrase occurred to me, and the more I've thought about it the more sense it's made. Let me make it in context.


The specifics of the conversation had to do with informed consent and the decisions of patients and/or families - perhaps especially families when the patient can't participate - regarding goals of care and possible treatments. Now, there have been many discussions on what "informed" consent might mean, and whether we can really and accurately inform patients and families. Those discussions are important, but I was struck in the conversation by another point. Even when we try hard and do our best to provide information that is accurate, and try to provide it in a form comprehensible by the person in front of us (usually someone who would not comprehend the word "comprehensible"), people make decisions or ask further questions that seem to us as professionals as if the person didn't understand. With some further conversation the person might completely and accurately recount back to us the information provided, and then still ask for information or, more importantly, for an intervention that seems to us unhelpful. Once again, we wonder whether the information has really been comprehended (understood more deeply than simply the level of definitions and concepts).

Most of the time over the years I have noted and pointed out to colleagues that this is one consequence of the principle of autonomy, and especially of how in our American context (by which I mean specifically the United States, and not including Canada or Mexico) autonomy has become the overwhelming principle applied in making health care decisions. If we allow folks to make the decisions, we need to be prepared for them to make decisions we find foolish. As I have often said after a difficult family conference, "It's not that they don't "get it." The problem is that they don't want it."

It occurred to me, though, that this reaction doesn't do justice to the families of patients, because it doesn't claim our part in our own frustration. It occurred to me that we expect that informed consent will in fact be conformed consent - that is, that the information that we find compelling will also be found compelling by the other party.We have been persuaded by our own information and logical reflection, and we expect it to be persuasive to any other rational person. Ergo, if it isn't persuasive the other person must not be rational.

And that is our sin. That dishonors the other persons' values and frames of reference. It is also as much a cause of our frustration as the other persons' responses. It's the unclaimed, usually unrecognized prejudice - literally, our pre-judging of what constitutes reasonableness, if not of the person specifically - through which we set ourselves up to be disappointed.

In that light I'm humbled by how often we aren't disappointed or frustrated - that it doesn't happen more often than it does. That is, in fact there is enough of a shared social frame of reference that much of the time the "best medical advice" that we offer is persuasive for those who listen. Let me be clear: it is also part of that, and a part that we need to be self-aware about, that some of that social frame of reference has to do with the status of the expert and of the physician (in these instances combined in one), so that it is not the information or the logic that is persuasive but instead the perceived authority of the physician. Still, even recognizing that caveat, it is a fact (one that we don't appreciate often enough) that there is enough shared sense in our culture of what constitutes "reasonable" that we don't have more moments than we do when we project that the patient and/or family are "unreasonable."

Nonetheless, these encounters happen more than we like, and perhaps should happen more often than they do. That is, we are too hasty to present our information and our reason from our context without taking the time to step into the other person's. We think what we find compelling must surely be compelling for others. We expect an informed consent process to result in conformed consent, and get frustrated when it doesn't work out that way. Unfortunately (and this is not really news), our expectations are as much an issue as another's lack of understanding or unreasonableness; and our frustration with the situation and with them is in no small part our own fault.