Interesting. But what does it mean for ethics?

Terry Rosell, DMin, PhD
February 4, 2010

Monti, et al. have published in the New England Journal of Medicine an interesting study that should have very little effect on what constitutes ethical response to brain injured patients in a minimally conscious or vegetative state. We need to be clear both about what the research indicates and what it means.

This study is premised on the fact that diagnoses of disorders of consciousness are accurate only about 60% of the time, and that MRI technology might improve accuracy by imaging even faint brain activity in patients for which none might be expected otherwise. Of the 54 patients in this study, all diagnosed as either minimally conscious or vegetative, 5 gave evidence under MRI of some awareness. One patient could even respond “yes” or “no.”

This is interesting. But what does it mean for ethics?

To me, it means that I am wise to be explicit in oral and written healthcare directives regarding my strong disvaluing of potentially being maintained for months or years in anything like a minimally conscious or vegetative state, with or without awareness. Especially if that state of being were to involve awareness like that of a “locked in” state, I can imagine no worse hell. Could one cope? Yes. Do I want the opportunity to try? Not on your life.

Hence my worry is not that someone will pull the plug on me while I still retain awareness, but that some well meaning vitalist with a mandate from God might overrule my directives and subject me to a torturous existence for years on end.

In the process, my moral community would have spent enormous medical and monetary resources on my “care,” ironically violating yet another value I hold in regard to personal frugality and distributive justice. Life is indeed sacred, or nearly so; but my life is no more sacrosanct than the precious lives of, say, Haitian children who die for lack of access to basic healthcare resources on account of disparate distribution.

Let it be known to any who care that extending my own life under conditions like those of the patients in the NEJM study is not worth it to me. Don’t do it.

There could be someone whose valuations on this matter are quite the opposite of mine, and who wishes personal physiological extension of life no matter how cruel and costly an existence. If so, the use of MRI and better diagnosis may support that patient’s right to decide.

None of this is apt to garner many recoveries of cognitive ability, however. May it then not raise false hopes in that regard, or impact negatively reasonable decision making in the vast majority of cases where meaningful recovery is unlikely and allowing natural death may be the best of bad choices.