Tuesday, March 22, 2005

Cri de coeur

I'm anguished. I think Terri Schindler Schiavo may die, unspoken-for. The attempts to speak for her continue to echo in not just metaphorical but real halls of justice; but her death is one day closer now, and another door has just been bolted shut.

I don't know the truth of the matter; I know that her family has mustered impressive testimony and affidavits that, at minimum, call for her reevaluation based on modern neurology, not the decade-old opinion of a non-neurologist doctor neurologist [corrected 4:33PM EST 3/23/2005 - my apologies] who, in the words of the Rev. Robert Johansen in the National Review Online, "seems to have a knack for finding PVS. Cranford also diagnosed Robert Wendland as PVS. He did so in spite of the fact that Wendland could pick up specifically colored pegs or blocks and hand them to a therapy assistant on request. He did so in spite of the fact that Wendland could operate and maneuver an ordinary wheelchair with his left hand and foot, and an electric wheelchair with a joystick, of the kind that many disabled persons (most famously Dr. Stephen Hawking) use. Dr. Cranford dismissed these abilities as meaningless. Fortunately for Wendland, the California supreme court was not persuaded by Cranford’s assessment." Dr. Cranford diagnosed Terri Schindler Schiavo as in a persistent vegetative state, or PVS, after a mere 45-minute examination; a second doctor, Dr. Peter Bambakidis, afforded her half an hour. PVS is generally diagnosed over months of observation, not minutes.

I'm sick over it. I'm heartbroken. If you don't know that Terri Schindler Schiavo responds to instructions, that she discerns and turns toward familiar voices even over music and unfamiliar voices, that she shows preference for some pieces of music over others by consistently vocalizing during them, that she has been denied even the basic range-of-motion physical therapy that would help to straighten her limbs for over a decade, that nurses testify that she has been spoon-fed in the past and has not choked but that the court ordered medical personnel to desist from feeding her this way because she might choke, that she has never choked on her own saliva yet does not drool, that a bone scan appeared to show broken bones for which she was never treated, yet her husband's desire to have her cremated immediately after death has been upheld by the same court over the pleas of her family to preserve her body for examination first... well, now you do know those things. If you remain convinced that she does not deserve a hearing in a court that has not patently demonstrated itself as unfriendly to her, and that her husband, with his common-law wife and their two children, is her proper advocate, well, my living will will explicitly keep you from my bedside.

I don't want to sow division, honestly I don't. But where there is this much question, should we not err on the side of life rather than death?

6 comments:

Cobra said...

Jamie,

First---you have a fine looking weblog. Congratulations! I think the Schaivo debate isn't ANY concern of the federal government.
Second, I wonder, having watched a tube fed grandmother finally pass away in my presence this passed year, whose wishes are really being attended in this case. That of Terri Shaivo herself (who in their right minds would WISH to remain essenitally helpless and brain damaged for 15 years) or that of her parents, who are understandably guided by something other than practicallity at this point.
Advances in science and medicine have us rushing headlong into deeper philosophical questions--such is what is the quantitative value of life itself? Should hearts and organs be artificially maintained in the absence of brain activity? What new protocols must be utilitized before death is "pronounced?"

This will resonate far beyond Terri Shaivo, I fear.

--Cobra

Jamie said...

So nice to hear from you, Cobra! Sorry it's been so long... I'm obsessing a bit on this case.

I think the Feds ought to stay out of this kind of argument in general, but the 14th Amendment does place it within their purview, doesn't it? Powerline is of the opinion that the parents were out-lawyered at the beginning (makes sense, since Michael Schiavo had the money and they didn't; their first lawyer was reportedly way too inexperienced to handle M. Schiavo's) and have never recovered, esp. since the early court cases were the ones in which "findings of fact" were reached that have been immune to re-examination since that time. Including Terri's wishes; including Terri's condition.

But it's your last point that's the HUGE question: what value does human life have? Is a human life valuable only if (a) it includes normal cognition and (b) someone wants it around? Or is it intrinsically valuable, and Terri's ability to think irrelevant? I've seen it stated in many places, and had concluded myself, that the Schindlers have almost been forced to argue that Terri has some chance of recovery in order even to be heard, because the perfectly valid argument that even if she never regained a single bit of what she had, they would still love her and care for her, has fallen on deaf ears. Terri has no value unless there's hope that she'll be Christopher Reeve or that woman in Kansas who emerged from her PVS or whatever that recent story was.

As usual, our science outstrips our morality; I have thoughts on this point that I'll make in my requiem post to Terri Schindler Schiavo, which - from the looks of things - will be coming up within the next few days. RIP.

I'm sorry for your loss; it must be heartbreaking to watch a loved one die in a state more helpless than a baby. But there's a clue here as to why the terrible divide between the Schindlers and Michael Schiavo: I have three kids, all of whom came to me entirely dependent on me for their very life. It's easier for a parent to accept the need to care for a child whom they've already seen and cared for in this state of utter helplessness than for a husband or wife to see a spouse so helpless, or a child to see a parent so helpless. The husband, wife, child, never knew the loved one in that vulnerable condition; the loved one was variously a partner or a quasi-god. How difficult, to see that person brought so low.

But its difficulty, the pain of it for the still-strong, is not necessarily sufficient to remove the helpless from existence. That's the quandary we're in now.

Cobra said...

Jamie,

You might want to turn your attention to TEXAS, and read about the results of the "medical futility statute" George W. Bush signed into law as governor in 1999.

http://www.chron.com/cs/CDA/ssistory.mpl/metropolitan/3084934

To me, this story should be getting HUGE ATTENTION, but for some reason...

--Cobra

Jamie said...

The statute to which you refer isn't all that scandalous, IMHO... and it is getting play. I've seen it brought up in, I don't know, a dozen places? More?

The statute as signed by Bush in 1999 provided for the following, if I understand it correctly: where a hospital believes that a patient without an advance directive is beyond hope (terminal), and the patient's surrogate disagrees, the patient's case is automatically referred to a board of ethics. The board probably comprises staff and board members of the hospital, I'd guess (though I haven't yet read it to confirm), so it's perhaps a valid argument that the ethics board has a conflict of interest in the case.

However... assuming for the moment that it's possible for the ethics board to deliver a decision on the case in favor of the patient, the patient is not removed from life support. On the other hand, where the board agrees with the doctor(s) that the patient is beyond hope, the surrogate has ten days to find another facility that will accept the patient before life support is removed. I think I remember reading somewhere that where the surrogate is in fact searching assiduously for another facility and there appears to be some chance that they'll find one, the hospital tends to extend the date of life support removal; however, since I can't remember a citation, I can't attest to that.

An amendment to this law signed by Bush's successor in 2003 allows for the inclusion of minors under the statute. This is the provision under which Sun Hudson, whose congenital lung defect assured his impending death (though, again, I haven't looked into this case sufficiently to know how long doctors would have though he could survive), was removed from life support, over his mother's objection.

It's always tragic when a living person can't be saved or cured by the toolbox of miracles we call "medicine." It's even more tragic when medicine's failure results in the person's death. But death is coming for us all, and we have to recognize that fact.

This is the point at which I return to my Catholic roots: No one should be forced to accept medical treatment, and refusing it is not suicidal, but rather, a bowing to the inevitable, or to God's will if you prefer. (Food and water, however, are not "medical treatment.") Poor baby Sun had no say in what happened to him, either in the mistake of development that led to his condition or in the hospital's conclusion that no matter what was tried, he could not live. His mother, who disavows the existence of death, naturally didn't want to let him go, but it's my understanding that she would have had to in any case.

What makes Sun's case especially noteworthy now is that his mother's poverty might have had (almost certainly did have) an effect on her ability to find a facility that would have accepted him. If she'd been able to pay for his maintainance, surely some hospital would have been willing to take her money and wait for her to conclude on her own that he wasn't getting better. It could be argued that a single-payer system would result in fewer of these life-versus-dollars' decisions being made - but the reason would not be that a terminally ill child of indigent parents would be maintained indefinitely, but instead that fewer very ill people would stay alive until the decision point. Rationed care, as we see from countries that have it, would be less tragic in the breach only because it would be more tragic in the aggregate.

Cobra said...

Jamie,

That was a terriffic post. I think that poverty plays more a role in catastrophic care than many would like to admit. The frightening aspect of the medical futility law in Texas is the something pro-life advocates would definitely fear. Sun Hudson was 5 months old, so in effect, one can argue that his death was a "fifth trimester" abortion. Think about it: with the state of technology, pre-natal testing can determine if there are congential maladies or ailments. The moral question would the heart-rendering decision of giving birth to a child with little chance of survival. Based upon the Darwinian creed of the health care field, this law is a death sentence to the poor. Who would be the proxy for orphans, widowed, and indigent?
These are sweeping questions that go far beyond Schaivo, and I agree with you that there are no simple answers.

--Cobra

Jamie said...

No simple answers, no "wins"...