Death, money, and freedom

The Texas “futile care” law creates situations in which, of two otherwise identical patients, the one with insurance or cash stays on life support and the one without has life support removed. Should we be comfortable with that?

This little essay takes off from the Schiavo case but isn’t really about it. It’s about the appropriate ethical standards for deciding whether to maintain life support, and the role of money in that process.

Imagine two otherwise identical patients in a Texas hospital. For concreteness, assume that they are medically identical to Terri Schiavo.

Both are in irreversible persistent vegetative states with massive loss of cortical tissue and flatline EEGs; both are being fed through feeding tubes; the doctors describe both conditions as “irreversible,” which they certainly are, though not “terminal”: i.e., the patients, like Terri Sciavo, could be kept “alive” — if a person without a mind can properly said to “live” — indefinitely.

Assume further that, unlike the Schiavo case, each patient has left an advance directive asking for indefinite life support under those circumstances, or that no such directive exists in either case but that the families or other surrogate decision-makers have requested that life support be continued.

Assume further that, in each case, the hospital decides that maintaining artificial nutrition and hydration is “inappropriate” and therefore refuses to continue it, as the hospital has the right to do under the Texas law Gov. George W. Bush signed. (That would be like the Nikolouzos case except that Nikolouzos wasn’t breathing on his own and needed a ventilator as well as a feeding tube.)

Under the Texas law, the hospital must maintain life support for at least ten days, during which the patient (or, in this case, the patient’s surrogate decision-makers) can seek another institution willing to take the case. After the ten days, life support can be withdrawn.

In the Nikolouzos case, the family went to court and managed to stall the hospital until a nursing home could be found willing to accept him. Had no such institution been located, he would have died, over the protest of his wife and children. At one point, one nursing home indicated a willingness to take him, but only if Medicaid would pay the bill.

That led me to make a rude remark about modern medicine and negative wallet biopsies, which was false as applied to the hospital that had decided to take Nikolouzos off his ventilator, but true (as far as I know) as regards the nursing home. At that moment, Nikolouzos was apparently going to “live” or die depending entirely on money. [A long-term care facility finally took Nikolouzos without any assurance that Medicaid would pay. it is now several weeks since the court prevented his ventilator from being disconnected, and his heart is still beating.]

There are at least three layers of questions here:

1. What I would want done for myself in that situation.

Turn off the damned ventilator, pronto, thus (1) ending a process that isn’t doing me any good, (2) relieving those who love me of the burden of seeing my body when there’s nothing there but a body, (3) relieving the caregivers of work that speaks well of their morals but demonstrably shortens their lives, and (4) freeing the bed for someone it might actually help.)

2. What I would want done for someone I loved in that situation.

Not necessarily the same answer, but in my case the same answer. Once no one’s home anymore, respectfully turn off the lights.

3. How I want the decision made.

I would take the patient’s expressed wishes, or those of the patient’s appointed or natural surrogates, to be determinative. In this I venture to differ with both Kevin Keith of Lean Left and Prof. Tom Mayo of HealthLawProf, despite the obvious fact that they know more than I do about the problem. I come down on the side of autonomy as against resource saving and expertise in making these decisions, but do so without strong conviction; there are potent arguments on each side. As the candidate for a pastor’s job said to the vestry, “I could preach it round, or I could preach it flat.”

I would, I think, make a strong distinction between artificial nutrition, hydration, and ventilation on the one hand and experimental curative procedures on the other. A patient who convinced that an operation will cure him of what the oncologists say is inoperable cancer may, I think, reasonably be refused. But it seems to me that a patient whose heart can be kept beating for a while longer with a tube and a ventilator (in my view, it shouldn’t matter morally whether “a while” is hours or decades) and who has decided, personally or by proxy, that he wants it kept beating, should be accomodated.

If I were the patient, I would judge that care “futile,” since it can’t bring me back to consciousness and I don’t place any value on mere biological life. But for someone who wants his heart kept beating — or, rather, wanted, when he was capable of wanting things, that his heart should be kept beating under those circumstances — care that reliably will keep that heart beating can’t be called “futile” without stretching the language.

And in the absence of an advance directive or other direct evidence of the patient’s wishes, I think we need to regard the view of the surrogate decision-maker, whether a person chosen explicitly by the patient or the next of kin, as a full substitute.

[The Hudson case is a harder one; apparently Sun Hudson was aware enough to feel pain, so keeping him alive, as his mother wanted, would have resulted in prolonging his suffering along with his life. I’d be very reluctant to overrule a mother’s decision about the life of her infant. But as that case apparently didn’t involve money, it’s to one side of the topic of this essay.]

(And yes, I’d feel differently if the hospital were in Kenya or Pakistan, where prolonging one life might come at the expense of saving many lives. That’s clearly not true in the U.S. as a whole, though cuts in Medicaid and county health department budgets certainly make the tradeoffs tougher when it comes to poor people. That’s why it’s such an outrage for the Administration to make a fuss over Terri Schiavo just weeks after proposing deep Medicaid cuts.)

But assume we’ve decided to make the decisions the Texas way: the patient or surrogate expresses a preference, the doctor expresses a medical opinion, and if they clash an ethics committee plays Solomon, reserving to the patient or surrogate the option of finding an alternative provider. Is it OK that money is going to make finding such a provider easier?

One view is: It’s rough, but it’s not wrong. Poor people have fewer options than richer people; that’s what “poor” means. (G.A. Cohen has a wonderful paper making this point, as a way of arguing that equality before the law can’t create genuinely equal liberty in the face of grossly unequal resources, but I can’t find the cite offhand; I heard it as a talk. Simlarly, Schelling argues that it’s usually wrong to try to escape from the problems of income inequality by providing particular goods and services rather than fixing the income distribution.) Given that the care in question has been medically determined to be “futile,” those who don’t get it because they can’t pay for it suffer no real loss, while those who do get it because they can pay for it ought to have the liberty to waste what is, after all, their money.

But the other view, and the one of which I am persuaded at the moment, is that we ought to try as hard as possible to run a society where no one literally dies now instead of later (after all, we’re all going to die sometime) for lack of money.

A relatively small twitch in the Medicaid rules would accomplish that. Yes, it will cost money. But the last time I checked we were a rich country; and as Cephalus says to Socrates, the best thing about being rich is that you can avoid acts of injustice.

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: