Schiavo, Hudson, and Nikolouzos

Two Texans, one young and one old, are being taken off life support by their health care providers over their families’ objections. So where’s the outrage, Mr. Delay? Mr. Bush?

Sun Hudson, a six-month-old boy with a fatal congenital disease, died Thursday after a Texas hospital, over his mother’s objections, withdrew his feeding tube. The child was apparently certain to die, but was conscious. [Or perhaps not: see third update below.] The hospital simply decided that it had better things to do than keeping the child alive, and the Texas courts upheld that decision after the penniless mother failed, during the 10-day window provided for by Texas law, to find another institution willing to take the child.

Where, I would ask, is the outrage? In particular, where is the outrage from those like Tom DeLay, who referred to the withdrawal of Terry Schiavo’s life support as “murder”? If it’s appropriate to Federalize the Schiavo case, what about the people being terminated simply because their cases are hopeless and their bank accounts empty?

Sun Hudson is dead, but 68-year-old Spiro Nikolouzos is still alive, thanks to an emergency appeals court order issued yesterday. However, his life support could be cut off at any moment. A nursing home is willing to take him if his family can show that he will be covered by Medicaid after his Medicare runs out. Otherwise, the hospital gets to pull the plug.

The Texas cases contrast with the Schiavo case in two ways:

1. Schiavo is in a persistent vegetative state, but isn’t terminal. The two Texas patients were terminal but not vegetative. [Or perhaps they were in fact vegetative: see third update below.] It seems to me that the distinction between a patient who is aware and a patient who isn’t aware is the morally relevant one, while the disctinction between a death that is sure to occur soon and a death that is sure to occur eventually is morally irrelevant. (Try pleading as a defense to a murder charge that the victim had a terminal ailment.)

2. Terry Schiavo’s husband has decided that she would have wanted to die, and the courts have upheld his view against the view of her parents. The mother of Sun Hudson wanted her child to live, and the wife and children of Spiro Nikolouzos want him to live. So while the Schiavo case is an intra-family dispute, the two Texas cases pit the families against health-care institutions motivated at least in part by financial considerations.

I’m not a fan of futile care, and my sense — based on what limited facts I can glean from the media — is that if the decision were mine I would have wanted to pull the plug in all three cases. (Certainly, if I’m ever in Spiro Nikolouzos’s condition I hope someone puts me out of it quickly.) But it doesn’t seem to me that my view, or your view, or the hospital’s view, or the judge’s view, should be controlling here.

In a country rich enough so that giving expensive medical care to someone doesn’t mean starving someone else, the decision about whether to prolong life, I would assert, properly belongs first to the person whose life is involved. If that person is unable to decide and communicate that decision, and has left no explicit directive, then the decision ought to be made by someone likely to choose what the person whose life is at stake would have chosen.

(The law that makes the spouse, rather than the parents, the default decision-maker seems to me a reasonable one, and I’m not sure I see a good argument for favoring whichever surrogate chooses survival. I don’t pretend to know the facts of the Schiavo case well enough to judge whether, in that particular instance, there was reason to think that the parents would have been the better choice, but surely there’s a strong case for a having a clear rule about which relatives get to decide rather than making a case-by-case adjudication.)

But the notion of letting the health-care providers decide, after doing a careful biopsy of the patient’s wallet, strikes me as pretty damned outrageous. [Update: the “wallet biopsy” remark turns out to have been mostly unfair as applied to the Hudson and Nikolouzos cases.] And it seems to me that the Right-to-Lifers ought to agree, though apparently anti-abortion groups had no problem with it when Gov. George W. Bush signed the Texas Futile Care Law.

No doubt an argument could be made for the Texas law, based on some combination of cost and the possibility that an impersonal institution will sometimes avoid mistakes that an emotionally-involved relative would make, and I have no reason to doubt the good faith of those who make that argument.

What I can’t figure out is how someone could be genuinely outraged about the Schiavo case but not about the Hudson and Nikolouzos cases. Perhaps Mr. Bush, who says he thinks there should be a “presumption in favor of life,” can explain that to us.

Updates

1. Thanks to Atrios, the Hudson and Nikolouzos cases are now all over the left blogosphere, but so far the “real” media continue to ignore them. This will be an interesting case of whether blogging can force a story into the larger discourse. In the absence of a partisan divide, I’d bet against it.

2. Matt Yglesias and Barbara O’Brien of Mahablog make a point I’d missed: voting for the Schiavo bill and voting at the same time for Medicaid cuts — which, under laws like the Texas law, means that people will have their plugs pulled not because their families want them to die sooner but because their health-care providers don’t want to run up a bill for unpaid care — is pretty damned outrageous.

[Hat tip, twice, to Kevin Drum.]

3. Query: Is there a copy of the outrageous Senate Republican talking points around somewhere? I’ve seen references and quotes, but no link to the full text. For some reason, this doesn’t seem to have become part of the main narrative.

Second update: Spiro Nikolouzos’s family found another facility willing to take him, so he is no longer threatened with having life support withdrawn. But the family plans to fight for changes in the law. Hat tip: HealthLawProf.

Sun Hudson, at last report, was still dead.

Third update: Kevin Keith at Lean Left has a long and thoughtful defense of “futile care” laws, and a critique of the analysis here, based in part on what seems to be a more accurate account of the facts. It appears that Sun Hudson was, and Spiro Nilolouzos is, persistently vegetative. That reinforces my conviction that pulling the plug is the right thing to do, but it doesn’t much weaken my belief that the call should be made by the families, not by the health-care providers.

Thanks to a reader, I’ve finally managed to make sense out the distinction being made by the save-Terri forces between her case and the Texas cases. She is able to breathe on her own, but can’t swallow and therefore needs to be fed through a tube. Lots of people, and some of the major religious traditions, regard assisted breathing, but not tube-feeding, as extraordinary measures, so that taking away her feeding tube counts as killing while taking away Sun Hudson’s breathing tube didn’t. That distinction seems utterly arbitrary to me, but it might seem valid to someone else, who could then have at least a subjective good-faith reason to want to keep Schiavo alive while allowing Hudson and Nikolouzos to die.

That still wouldn’t justify throwing around terms such as “murder” and “Dauchau.” And it still wouldn’t expain how someone could upset about the Schiavo case could regard the Texas Futile Care act as anything but an abomination.

The act specifically includes “artificial nutrition and hydration” among the forms of treatment that can be discontinued. Moreover, the law allows for (even if in the Hudson and and Nikolouzos cases it did not actually involve) the termination of life-sustaining treatment for patients with “irreversible” conditions (i.e., conditions from which they will not recover and which leave them unable to care for themselves) even if their higher brain functions are completely normal.

Indeed, the law contemplates that a fully competent patient may be served by his health-care provider with a 10-day notice to find another provider or have his plug pulled; it even provides that the patient has the right to attend the committee meeting at which his fate is to be decided. (Sec. 166.046) And the law provides no substantive guidance for the termination of care other than the provider’s decision that the requested life-sustaining care would be “inappropriate.”

So, if I read the Texas law correctly, it would allow for Terri Schiavo’s feedling tube to be disconnected if her health care provider so decided, and if her family couldn’t find another provider willing to take the case, even if her higher brain functions were entirely normal (rather than, as appears to be the case, entirely absent), even if she were awake and asking to be allowed to live.

That’s right: the law George W. Bush signed as governor would have allowed Terri Schiavo’s health care provider to pull her plug.

Perhaps his emergency flight was made to the wrong capital. Someone in Austin needs to be told about the “presumption in favor of life.”

More here.

Fourth update

1. The rude remarks above about the relationship between money and the outcomes in the Hudson and Nikolouzos cases were, I am now convinced, inaccurate.

2. My bet that the story wouldn’t penetrate the mainstream media also turned out to be wrong. Knight-Ridder nails it, as does the Associated Press.

3. If these lapses from infallibility bother you intolerably, there are many other weblogs to read whose authors never make mistakes.

Author: Mark Kleiman

Professor of Public Policy at the NYU Marron Institute for Urban Management and editor of the Journal of Drug Policy Analysis. Teaches about the methods of policy analysis about drug abuse control and crime control policy, working out the implications of two principles: that swift and certain sanctions don't have to be severe to be effective, and that well-designed threats usually don't have to be carried out. Books: Drugs and Drug Policy: What Everyone Needs to Know (with Jonathan Caulkins and Angela Hawken) When Brute Force Fails: How to Have Less Crime and Less Punishment (Princeton, 2009; named one of the "books of the year" by The Economist Against Excess: Drug Policy for Results (Basic, 1993) Marijuana: Costs of Abuse, Costs of Control (Greenwood, 1989) UCLA Homepage Curriculum Vitae Contact: Markarkleiman-at-gmail.com