Samizdata

Terri Schiavo died this morning.

I hope that her husband and family can find some peace, if not with each other, than at least within themselves.

Now that the emotional flash point of the debate is gone, I hope that we can have a more considered policy discussion over who should make medical decisions for non-decisional patients, and under what restrictions.

Nobody is willing to take the position (at least in public) that a person should not be able to refuse medical care in person, on their own behalf. However, many of those now engaged in the struggle over end-of-life health care are, wittingly or not, arguing that some health care decisions should be removed from private hands and made by the state.

The current baseline rule is that your personal autonomy with respect to consenting to or refusing to consent to medical care is pretty much absolute (I am discussing medical care, not mental health care, which operates in a parallel universe on these issues). I note that there are some second-order restrictions on what kind of care is actually available to you, arising from various licensing and regulatory regimes, but leave those aside for now. You can refuse any and all kinds of care, ranging from the most extreme life support to the most mundane blood transfusion, and people do all the time, even when the refusal puts their life at risk.

Things get more complicated when you are unable to decide for yourself (or, what amounts to the same thing, unable to communicate your decision). Someone has to decide what care you will be given. Your ability to make such decisions in advance will, sooner or later, be outrun by the unforeseeable complexities and irreducible detail of your medical care. If nothing else, someone will have to interpret your written instructions and apply them to the messy clinical realities. At the end of the day, if you are not “decisional” you will have a surrogate decision-maker. That decision-maker will either be a private individual or the state.

The current system very rarely results in the state directly taking custody of a medical patient who is not decisional, and is very heavily biased toward leaving health care decisions in private hands, with a fairly limited “reserved” power in the state to hear disputes about who the private decision-maker should be. So far, so good.

Although reasonable people can disagree on whether, for example, Michael Schiavo should be Terri Schiavo’s surrogate or one of her parents should be, this dispute is over the proper issue of which private party should make decisions. It is very difficult, I think, to argue that this issue hasn’t been fairly and adequately processed by the courts.

However, we are seeing increasing pressure to restrict the decisions that the surrogate can make. This is where it gets tricky, because legal restrictions on the decisions that a private decision-maker can make mean that the state is making that decision. If there is a law on the books that prohibits your surrogate from consenting to experimental treatments, then the state is making the decision that you will not receive that treatment. If there is a law on the books that prohibits your surrogate from withdrawing a feeding tube, then the state is making the decision that you will be fed through a feeding tube.

The current mantra that “if there is any doubt, err on the side of life” is a TV-friendly sound-bite in the service of expanding the control that the state has over your medical care, because this “principle” removes from your surrogate the ability to make health care decisions, and is functionally equivalent to the state ordering that medical care be provided regardless of your wishes. For your own good, of course.

Similarly, the endless agitation for more appeals amounts to agitation for more state review and oversight of a nominally private decision. For your own good, naturally.

In short, to the extent any coherent public policy is being advanced by the people who want the feeding tube re-inserted into Ms. Schiavo, it is a public policy that shrinks the decision-making powers of private decision-makers, and necessarily transfers those decisions from private hands to those of the state.

The over-riding principle that is cited in favor of this transfer of power to the state is the protection of life. However, the protection of life is not an absolute trump card; indeed, when it comes to medical care, personal autonomy overrides protection of life; otherwise, the law would require that life-saving health care be provided to you over your objections.

Nobody is willing to take that step, so advocates for the transfer of power to the state are left in the position of arguing that some decisions that you can make for yourself should never be made by your surrogate, but should be made by the state instead. Those are the only two choices on offer – either the state makes decisions about your end-of-life medical care by prohibiting your surrogate from deciding, or your surrogate decision-maker does.

I think you know where my instincts are when faced with a choice between preserving the private sphere and expanding state control.