Schiavo Means?

A few thoughts about what, other than reform of laws about euthanasia, might come from this incredible climax to the Schiavo case:

Living Wills May Not Work, but I'm Getting One - There couldn't be a more salient test of the question as to what it might mean if I do not write down "I prefer not to be held hostage by fears about a feeding tube for more than a decade, please." I've argued in several papers that living wills are a mistake and are unlikely to work, and others have found enough empirical evidence to cast doubt on the idea that advance directives make much difference in the care that patients receive. But tell that to Michael Schiavo. Today it is awfully clear that no matter what I and other critics of living wills might have believed about how well they work, they do at least make it easier to avoid the Schiavo level of confusion and wrangling. I have opined over and over again that living wills are too litigious. Um, ok, I was wrong. All around the country people will now begin thinking very seriously about writing down their wishes about feeding tubes and respirators. It is as John Danforth said when he pushed for the Patient Self-determination Act in the first place: young people "should get a Miranda warning" about what can happen if they do not talk to others about health care preferences.

In the Future, it Will Be Tough to Get a Majority of Legislators to Agree to Support Choices by Individuals About Health Care - The scene on the House floor as the debate persisted about Schiavo is staggering. Those who fought for the sanctity of marriage now fight against the importance of a husband's choice. Those who fought for the importance of the 10th amendment and states rights more generally are suddenly desperately fighting against a state's rule of law. The body that made it possible for Cruzan's case to become the Patient Self Determination Act is now deciding that expressed views about dying just don't matter. Why? Because Democrats do not want to run for office against campaign commercials that feature Terri Schiavo dying.

Systemic End of Life Care Is Now Officially Less Important than Jack Kevorkian and Terri Schiavo and Tom DeLay's Own Ethics Problems - Ask yourself when was the last time that President Bush and the Congress undertook anything like a midnight effort - including a flight to get the President from Texas to D.C. during a vacation - on behalf of healthcare. Give up? Never. Just think what could happen if Congress worked this hard or spent this much of our tax money to discuss and vote quickly on reform of managed care. It could never happen - but why? Because the battle over Terri Schiavo is illuminated by a single, vulnerable woman. If Democrats could manage to make a symbol out of a young woman dying of a curable chronic disease because she has no insurance, we might have 40 million fewer uninsured people in the nation today. And the lesson doesn't end there: this case is sucking the life out of the end of life care debate. Just as Kevorkian turned the nation's attention away from the problems that made his services seem desirable, the Schiavo case turns our attention away from dozens of critical questions about the funding of hospice and a dozen other issues.

Compassion for the Dying Schiavo and Her Family Ought Not Be Lost - There is no question in my mind that the Schiavo case illustrates wanton, callous political maneuvering on the part of some. It is equally clear to me that Congress has no business working on this case in this way - interfering in the lives of those who are touched by such tragedy as they make private decisions. But it should not be lost that many who have begun to fight in this matter as it has been quickly escalated have deep compassion for the Schiavos, and that such compassion comes from a vital sense that death and suffering must be understood and respected - and that love for life is important and beautiful. Somewhere in the middle is the opportunity to take this case and use it to move quickly to reform of national policies. I hope that happens. That will of course come as no comfort to the mother of baby Sun in Houston.

People Struggle Most Against the Worst Odds - There is no question about Terri Schiavo's condition. She is never ever going to awaken, no, to be more blunt, her brain is utterly destroyed and there is nothing of what was Terri Schiavo remaining in her but the simple functioning stem that causes her other organs to continue to function at the most basic level. That much is clear. All that remains of Terri Schiavo is her dignity and the symbolic meaning of her body. So why does anyone fight to keep her in this condition rather than discontinuing a treatment that everyone agrees is not therapeutic? What does it mean to fight against the impossible in this case? Republicans fighting against this measure have tried desperately to avoid discussion of what might re-grow Ms. Schiavo's brain, because God forbid they say what the man who offered Mr. Schiavo $1 million to keep Terri Schiavo said: stem cells. No, there is nothing here for them to point to but miracle. And it should be noted that pushing for a miracle against impossible scientific odds is a critical part of the American culture in an era in which physicians often feel that they must offer treatments that they do not believe are therapeutic. The idea that patients and others have a right to request things whether or not they work is being reinforced right now.
- Glenn McGee

posted Mar 21, 2005 | link | jump to the comments (10)

comments

I can tell you that I am not praying for Terri and her "miracle". She is getting plenty of prayers for that. I am praying that our court system, now involving the federal courts, continue their rational, non-hysterical and non-political approach and bring this case to a prompt and appropriate end. ..Maurice.

- by Maurice Bernstein, M.D. on Mar 21, 2005 at 3:32 AM | link

It strikes me that this Congressional action shows that a living will could be overruled if enough members of Congress want to.

- by Linkmeister on Mar 21, 2005 at 4:05 AM | link

Polemics sure are fun.
Really, though, those on the side of Terri's parents don't think they're rejecting the values you think they're rejecting. They just don't believe the facts are as you set them out.
That is, they don't think that there's any sanctity to the Schiavo marriage, or what remains of it now that M. Schiavo has effectively, if not legally, abandoned his wife and formed a new family. They don't think that it's been proved satisfactorily that Terri can't recover or that she's PVS. (Further testing--customary for this diagnosis and refused in this case--would alleviate those doubts.) They don't believe that Terri's wishes were conveyed to Michael Schiavo's family, as the trial court found, but not to her own. They also don't think these are "private" decisions, if the suggestion is that somehow these decisions are beyond the reach of the law. Finally, not everyone agrees that the withdrawal of nutrition is simply the withdrawal of a non-therapeutic treatment.
I should point out that it's just obscene to suggest that, if Terri truly is in a PVS, somehow "stem cells" could offer some hope to her. There's no evidence for that position, though lack of evidence doesn't keep people from favoring all sorts of bizarre things.

- by Thomas on Mar 21, 2005 at 3:43 PM | link

Thank you Thomas. This is exactly what I keep repeating to those who ask me what I think about this case, how the law has been handled etc. A friend was agitated by the legal aspects and couldn't believe that I would want the law to be subverted. All other things being equal, yes, follow the law, the chain of command. In this case though as you pointed out there seems to be "reasonable doubt." We wouldn't convict a criminal on reasonable doubt, why then do we think it's acceptable to remove nutrition and hydration (not any sort of extraordinary care) from Terri?!
BTW, let me know how those stem cells work out. Embryonic ones I suppose?

- by Daughter of St. John on Mar 21, 2005 at 4:55 PM | link

Can anyone give me sources for the medical testimony over the years as to the actual medical state of Ms. Shiavo? I know lots of people claim that her cerebral cortex is virtually gone, and that part of her skull is just filled with mostly fluid. I am entirely sympathetic to Michael Shiavo's attempts to let his ex-wife die if that is truly her condition, but I need SOURCES!

- by Tracy on Mar 21, 2005 at 6:36 PM | link

To Tracy, not sure, am looking myself; i can offer you a legal website: abstractappeals.com; otherwise to Glenn: Dude, living will/adv. directives were ALWAYS important for this very reason; to at least give some notice of intent. It was never foolproof...but better than having this...

- by bioethics dude on Mar 21, 2005 at 6:44 PM | link

If the wish were to "let her die," there wouldn't be a need to remove the tube - simply stop using it. There certainly is no rationale for refusing liquids and ice chips, etc., as Michael has done for years.
The act of removing the tube, especially in light of refusing oral fluids to a woman who is able to handle her own secretions without choking indicates an intent to cause death rather than allowing her disease to cause her death.
Add the fact that Michael Schiavo has not honored his marriage vows, and it's hard to believe that he would be motivated by a wish to honor any other promise he made to Terri.

- by Beverly on Mar 22, 2005 at 8:05 AM | link

Also, sample living will forms can usually be found in HOSPITALS, at least in New Jersey and Maryland (two states I'm familiar with). They should be able to provide these for free or a nominal fee.

- by bioethics dude on Mar 22, 2005 at 10:48 AM | link

I want to remind everyone that an advance directive "living will" statement may be very ambiguous later on when the patient has no capacity to make medical decisions. It is very, very important that there also be a Durable Power of Attorney for Healthcare selected by the patient and noted on the advance directive who can later "speak" for the patient with legal clout. See my blog for more. ..Maurice.

- by Maurice Bernstein, M.D. on Mar 22, 2005 at 7:47 PM | link

"Shortly after Michael Schiavos efforts to have his wifes feeding tube removed, an independent guardian was appointed. The guardian, attorney Richard Pearse, reported to the judge in the case that Mr. Schiavo was not a credible witness to his wifes end-of-life desires because he waited years to make his claim and because he stood to benefit financially if she died. Pearse was removed as guardian, at Mr. Schiavos attorneys request, and another independent guardian was not appointed."
I found this qoute from an article entitled "Disability is not a reason to die" In fact, the judge eventually appointed himself as her guardian ad litem. That doesn't sound right at all. Just as a newborn would be appointed a guardian ad litem in a legal matter, there should be legal representation who only has her best interest in mind. It's also MORE than odd that Mr. Schiavo never mentioned during the malpractice trial ($700,000 award) that Terri did not want to be hooked up to a respirator (which she was on during the trial by the way). In fact, he insisted he was going to personally care for her the rest of her life. He and his attorney estimated she would live to be 51. Shortly after the trial, he had her moved to a hospice, which is where terminally ill people go to die, rather than to a rehabilitation facility where disabled people learn how to live within their new limitations. The rehabilitation he promised during the trial has not been provided for her. Noone was able to find out if Terri could learn to feed herself because Mr. Schiavo forbid the rehabilitation that could have enabled her to do so. He used her to get the money and once that was accomplished he began his quest to end her life. It's so obvious in every action he's taken that he did not and does not care what Terri wanted.
I am appalled that other people just don't care about this woman being blatantly neglected, abused, and now legally murdered. It's sick that they vote on the little "feeding tube" polls without having done any research into the public records of what has really been done to her. I am astounded whenever someone lumps her into the same class as terminally ill patients. I support a terminally ill patient's right to die in a manner that he or she finds acceptable. However, after considering all the facts when it comes to Terry Schiavo and her feeding tube, I've decided that her situation is far removed from a right-to-die case and disconnecting her feeding tube is murder. So while I sit here contemplating the reality that nothing is going to be done to prevent this tragic crime, I cry for Terri and her family. Out there in the real world, modern society's sheep move on to safe topics of television shows and baaaasketball. While the water cooler drips lazily behind the depressingly ignorant, average societal sheep, Terri's body begins to enter the final stages of dehydration that will ultimately end her life.

- by on Mar 25, 2005 at 6:12 PM | link