Mike’s opinion about the Terry Schiavo case is that he’s grateful it’s not of his business.  Catnmus has concerns with our lack of euthanasia in this country.

Both are concerned about the lack of clarity as to whose rights prevail.

I feel the same way, yet being a parent adds a different dimension to my perspective.  I remember as a sophomore in high school having to give a speech on the topic of Karen Ann Quinlan for a language arts class; at the time, I advocated that Ms. Quinlan be removed from life support, so that nature could run its course.

Yet I’m not certain if I can advocate the same thing, given what little I know of Ms. Schiavo’s case. 

Ms. Quinlan wasn’t married at the time she became incapcitated, which made the situation less challenging.  The rights of a husband and spouse were not involved.  Ms. Quinlan’s parents also advocated strongly for the removal of life support; they were convinced with certainty that their daughter was in a irrevocable vegetative state.

I was convinced of the same thing, having seen no indication for potential reponsiveness.

But the Schiavo case is so much muddier than the Quinlan case.  It’s not just life support removal being discussed – autonomic functions like breathing or heart beat controlled by a ventilator or pacemaker – but an active choice to stop non-autonomic functions like hydration and feeding.  It’s an active choice of a long, lingering and often painful death.

How would any sane parent who has the slightest doubt in their minds choose that option for their flesh and blood?  I certainly couldn’t, if there was any sign of hope.  As I commented at Mike’s blog:

”…But seeing several videos of Ms. Schiavo and I'm not certain she isn't responsive; I know I could be manipulated, but what if that's what her parents see? What would I do for my own children if there were even the smallest glimmer of responsiveness in them in the same situation? What if a husband was the only obstacle between saving that glimmer? God help me, that I never have to be in that position. I cannot blame them for trying so desparately. The parent/child relationship is as sacred as that of husband and wife -- just as powerful, and much, much longer…”

We don’t know all the facts.  We don’t know the nature of the relationship between Ms. Schiavo and her spouse or her spouse and her parents.  My gut tells me something is amiss here; we’ve had the open conversations in my family and with my in-laws, between spouses and children and parents, about what is expected in the event of complete incapcitation.  We’ve all agreed that we, none of us, want to exist in a vegetative state where we are unable to participate in choices affecting our lives.  We would not want to see each other suffer.

What is impairing this common and caring humane understanding between Ms. Schiavo’s parents and her spouse?

Were Ms. Schiavo in as deeply vegetative a state as Ms. Quinlan, I think I would agree wholeheartedly with the spouse – and I feel strongly the parents would also agree with removal of life support.  Ms. Schiavo does manifest some functions, whether wholly autonomous or reactive, making a decision all the more difficult. 

I don’t know what’s right in this case – I know too little to judge, and I really should know far less.  I do know that it would be incredibly difficult to be Ms. Schiavo’s parents and not fight tooth and claw for their child if they believed there was some hope, husband or no husband, in the absence of clear instructions from their child.  What incredible heartbreaking pain it must be to them to doubt the system and be prevented from having any visitation with their daughter at this time.  No one in that family will come out of this whole; they will be scarred far beyond measure emotionally, no matter the outcome.

As horrible as the Schiavo case sounds, there are more common cases where elderly, terminally-ill or catastrophically-injured are resuscitated, again and again, only to die after much pain and suffering.  These patients failed to make it clear to their loved ones what efforts should be taken on their behalf if they have a life-threatening acute illness.  This happens every day across the entire country; these cases aren’t making the press because at some point within hours, days or weeks after entering the healthcare system they finally die.  But their remaining time is horrific, unspeakably painful and an enormous drain to the entire healthcare system.  Families end up in court out of confusion fighting the hospital and doctors who have been forced irrationally to keep a dead person alive.   Don’t do this to yourselves, to your family members.

As Catnmus says, talk with your families and write it down, just in case.

I say talk about it often, talk about it with your closest friends as well, and make a formal, written Advanced Health Care Directive.  I have one, have had one for ten years since before my daughter was born.  I make sure that when I’m going on a trip or get medical attention that I’ve remind key family members about the directive and its location.  My doctor has a copy on file in my medical records; he and I have discussed it, as well, to make sure we are crystal clear about my intentions.  I’m not old or sickly enough to simply write it “DNR”, but I did make sure it said my healthcare advocate and my doctor were authorized to make me comfortable – meaning, use drugs to ease suffering even at the risk of accelerating death.  Check with your doctor or your local hospital -- they frequently have forms available for this purpose.  (My hospital insists on one at the time of check-in for scheduled care.)  You can also check with your state representative; they also may have information and samples for you to use in preparation.

Further, look into appointing a conservator or guardian for yourself; quite frequently, people become incapacitated to a point where they are responsive (not vegetative) but unable to make decisions for themselves.  Who will speak for you, ensure that you are cared for while in that state?  Do not assume that your spouse will automatically become your conservator or guardian; worse, do not allow yourself to be placed into the hands of the state if your spouse and/or parents predecease you without giving this consideration.

It didn’t have to be as awful as it is for Ms. Schiavo’s family; don’t let it be so for yours.  Hope and pray for a merciful outcome for Ms. Schiavo and family – but act, don’t pray, on your own behalf.  Do it now, while you have the faculties to do so.

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