Wednesday, January 1, 2014

HCR -- Another End of Life Case

Among the New Year's Day tragedies is the case of Jahi McMath, brain dead at thirteen following surgery gone horribly wrong, whose grieving mother cannot come to terms with the reality that her child is dead. This story, though somewhat different, is receiving national attention similar to other end-of-life cases have in the past. This Facebook comment sums up what is happening:

...there's a cottage industry of escalating cases such as these to scandal status, and they all seem to follow a familiar script:
  • weeping family harbors unrealistic hopes; 
  • family makes ominous or outrageous accusations against hospital; 
  • hospital cannot respond due to medical confidentiality; 
  • wingnut supporters rush in to grind their particular religious and political axes; 
  • family & supporters trumpet unbelievable but unchallengeable reports of medically unlikely improvement; 
  • huge outcry by misinformed public develops. 
The hidden agenda is both to create precedent in law and public opinion for right-wing control of end-of-life decision making, and to paint medicine and science as evil and untrustworthy, to promote their general anti-science outlook. Tedious, familiar, and infuriating. The families often seem to be only marginally responsible. 
You have to sympathize with their hopes, even when unrealistic. It's the religious-right provocateurs who turn these cases into circus shows.

End of life and beginning of life issues are intensely personal and should never be subject to public debate except in the most extraordinary circumstances, especially in today's polarized political environment. That said, here are a couple of links to end-of-life readings I have been collecting for some time, a few of which deal with children and infants. 

When filling out my own advance directive I checked the following detailed instructions:
I want this Directive For Final Health Care to become effective at the time it is signed and to continue in effect until my death or beyond my death if an organ donation, autopsy or disposition of remains is authorized...
I notice the current Georgia form is not that specific, but that is a minor quibble. 

I urge everyone to take the time to prepare an advance directive, no matter what your age, and review it every five years or more to keep up with legal and scientific developments and to make sure none of your agents for care has died or changed their minds about the responsibility.  I'm sure forms vary from state to state, and this is an area still evolving in the public debate, so everyone has a responsibility to themselves and their families to keep up. 

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