Map of life expectancy at birth from Global Education Project.

Thursday, February 11, 2010

That, err, thing we don't want to talk about

There are two essays in the new NEJM about end of life care, from Robert Truog, M.D., and Lisa Rosenbaum, M.D. Unfortunately they are subscription only, and they are both very personal so I feel it would be improper for me to try to represent them in detail here. But they are representative of a trend I have noticed lately -- this open access essay in Health Affairs, again very personal, being another example -- toward push-back against what writers see as too-ready acceptance of futility.

Dr. Rosenbaum's grandmother, with advanced dementia, wound up through what was essentially a series of misadventures getting taken to the ER, despite DNR and Do Not Intubate orders, when she suffered some sort of a neurological crisis. She ended up living for another year in a world of delusion, though generally alert, able to speak and feed herself. Dr. Truog performed aggressive efforts at resuscitation on a 2 year old boy with severe brain damage, who was in fact already dead and which he knew to be absolutely futile, solely to please the family, a decision he does not regret.

I believe it is important to acknowledge and respect these points of view because there is a danger that the current debate over these issues will be misconstrued. I take it back -- it is, obviously, being misconstrued. Whatever decisions you feel you would make for yourself and your loved ones, the only people who are suggesting imposing the decisions they would make on others are the people who think you should not have the right to accept death when there is no meaningful life. In other words, counseling about end of life care is just that, counseling, to help people make decisions that are right for them. Medicare will still pay for whatever choices you make.

The exception in most hospitals - and this is not a question of insurance or federal policy, it's a question of medical ethics - is that physicians are not required to attempt resuscitation when they know it will be futile, as Dr. Truog did. This has a trivial cost, which is really not a consideration. The outcome was that the child was dead, as he would have been anyway, but his body was battered and bruised from the effort -- a fact which actually pleased the parents.

In my own father's case, as his dementia advanced and he lost the power of speech, no longer recognized family members, and could no longer feed himself, my mother decided on her directives. My father's primary care physician, I'm sorry to say, was no help to her in this, but she had the advantage of being able to consult with her son who has direct access to physicians who think about these questions deeply. She ordered that under no circumstances should he receive IV antibiotics, or a feeding tube, or be hospitalized. He died peacefully in a nursing home, when nature took its course. However, if my mother had decided he should be hospitalized, intubated and saturated with antibiotics, Medicare would have paid for it.

The issue is not to change that policy, it is to give people the right to choose and the information and support they need to do so. Will we ever calm down enough to make these distinctions and talk about them in a civil manner? Not of the Republican Party can help it.

1 comment:

kathy a. said...

i wish i could see the articles by subscription. the open access one troubles me -- not because i would deny that doctor's right to make whatever decisions he likes about his own care, but because of the tone of superiority regarding the family situation he described.

it may have been one of his more spectacular saves, but the patient and her family were the ones living with the reality of the patient's impending death. and they had thought long and hard about the DNR order; everyone does, in that situation.

my dad, too, was intubated in the ER despite a DNR order. once the dust settled, he wanted the tube out; he was mentally intact, it was his decision. we all knew what that decision meant. right before he went to sleep that night, we were joking about smuggling him out of the ICU and going to tahiti, and he was laughing so hard. he went into a coma a short while later, and died the next day.

my sister and i made the DNR decision, and decisions against surgery and other invasive treatments, because our mother was unable to -- she was never even oriented to time and place after her stroke, much less able to understand she had broken her hip, or any of the other medical things going on.

in both instances, i had real problems with doctors who thought they should have the last word about aggressive treatment. but we also dealt with doctors and nurses who were very kind and supportive. in my mother's case, we had to seek out doctors who would give us information and permit us to make decisions -- the default position really was "do everything," which was not in line with her previously-expressed wishes or ours.