Surprising news this morning: Haleigh Poutre’s medical condition has improved some.  She can now reportedly breath on her own, without a respirator (if you cannot link to this Boston Globe piece, here is another report).  This removes one of the big ethical issues related to her care: we no longer need to debate whether the respirator should be turned off.  She also may be responding to some stimuli.

    This should give us all pause and remind us of the variability of individual medical responses.  Doctors gave a dire prognosis a couple of months ago, guessing, in an educated fashion, that she would not survive if the respirator were turned off.  The passage of time now seems to have changed the situation.  It may be that her brain has healed enough from the horrible beating she suffered, to allow her to breath.  How far beyond this she might recover is anyone’s guess.  But what is clear is that some sort of healing process is unfolding, and time should be granted to see how far that process might go.  A child’s brain is a growing, adapting organ.  And hers may grow and adapt to the insult it has received:

Many neurologists say it is rare for a patient with severe
brain-stem injuries to fully recover from a persistent vegetative state
that lasts for more than a month. Sometimes, patients can partially
recover, such as showing increasing responsiveness to touch by frowning
or moving their hand, said Dr. Steve Williams, chief of rehabilitation
medicine at Boston Medical Center.

But rarely do these patients fully recover so they can communicate, feed themselves, and live ordinary lives, he said.

He
added, however, that the recoveries, when they happen, are more likely
with children than adults. ”There’s more plasticity to their brain,"
he said. ”There’s potentially other areas of the brain that can take
over."

    It seems to me now that, in light of these circumstances, the state of Massachusetts has an obligation to keep Haleigh alive for some time, to see how far the healing process might go.   I do not believe that the standard of an "ordinary life" should be used to judge whether her feeding tube should be removed.  "Ordinary" is fundamentally subjective.  We should not assume that a profoundly disabled life is somehow less valuable, in human terms, than any other.

    There may be a time limit for measuring her healing.  But, at this point, I think the state should wait at least a year before denying her care, at which point a new assessment can be made.  I do not believe in "miracles" in some divine manner, but I do believe that individual bodies can sometime respond in surprising ways to medical conditions.

    In thinking about Haleigh, I would also now further revise my approach to the ethical questions raised by end of life decisions for people with traumatic brain injury.  The first decision rule should be to maintain life support, to the extent that it has been initiated,  for a specified period of time (a year?) to allow for a determination of how well the brain is responding to the injury. We might need to leave room for "do not resuscitate"
orders that have already been established and may call for avoidance of
respirators in the first place: some people may believe that death
occurs when breathing stops, or hearts stop beating.   But in those cases where life support is on-going, there is no need to rush.  End of life is absolute.  Care should be taken in approaching it, even if that is not what the individual, or his or her proxies, want. 

    In Haleigh’s case, if the respirator is really gone, then the complexity of her care has been significantly reduced.  She could, perhaps, be moved out of a relatively intensive hospital setting.  She could be place in a residential facility where nurses and others could manage her feeding and intimate care.  And that, now, is what should happen.