Illusions of clarity and autonomy

The Washington Post has an Op-Ed exhorting Want to help save hospitals from being overwhelmed? Fill out that medical directive now. I expected to hate it more than I did.

So why did I hate it at all?

1. The clear message is that the some of us really should be willing to die for the rest of us.

There is little or no guilt-tripping manipulation in the column beyond that tacit message, but it goes out into a culture amply primed to understand. ‘Nuff said.

2. You’re not as clear as you think.

“[I]t is vital for physicians to know, and to honor, every patient’s explicit wishes,” the authors say, but “explicit wishes” carries a crushing burden there.

I practiced law for almost 40 years, with a lot of estate planning included. I was avocationaly involved in promotion of appropriate medical treatment for all, such as a symposium on physician-assisted suicide at Stanford in 1988, beginning before “Living Wills” became a fad. (Ever since then, by the way, I’ve been convinced that, for better or worse, we are going to get a single-payer system of some sort. I’m surprised it has taken so long.) And apart from the parents of a childhood friend, I don’t think I ever heard or was able to tease out of a client any “explicit” wishes.

My friend’s parents, though not very old, were tired of living and wanted no medical measures to sustain life.

Me: You mean that if you collapsed on the floor in front of me right now, you wouldn’t want me to call 911?

Them: Yes.

Now that was clear. I helped them doument their wish as strongly as possible, and somewhat to my surprise, they both were dead within five years.

Most of what I got from clients was vague but heartfelt pleas amounting to “I don’t want to die, but don’t let me end up like Karen Quinlan!” Understandable from the standpoint of empathy (nobody wants to “end up like Karen Quinlan”), but not as a concrete decision.

And then I had to try to fit the best I could tease out of them into something “substantially” in a legislatively-prescribed format that by itself was just more of the same vagueness. Efforts at adding clarity or nuance threatened to make it not in substantially the required form.

I couldn’t know because there was no caselaw. And there was no caselaw because …

3. Some doctor you’ve never met before will drive a Mack Truck through your ambiguities.

I can imagine clear advance directives by people who have candidly spoken with their physician about the expected course of a specific terminal condition that has been diagnosed. That’s what P.O.S.T. laws are about.

But because advance directives other that P.O.S.T. orders are (almost – see above) always vague, physicians pretty much do what they think is reasonable.

Maybe you’re okay with your long-time physician doing that, but if you’re in the hospital, it’s likely to be a physician you never met before.

4. Once you’re incapacitated, you’re no longer autonomous.

Early in court disputes over medical decisionmaking for incapacitated people (see Karen Quinlan or Indiana’s Sue Ann Lawrence), judges were groping around for a rationale to keep the courts from being flooded with such cases. They frequently lit upon the notion of “autonomy,” a rationale so transparently bogus as to drive a philosopher mad, and I was too philosophical to suffer such foolishness gladly.

The rationale was absurd and perverse because the cases invariably involved incapacitated people.

If not incapacitated, patients make their own decisions, and are bound (in theory) by no limitations on their deciding. Want to make a bizarre and lethal decision to forego an antibiotic for an easily-treated staph infection? No problem. Injecting you would be malpractice and criminal battery if you refuse it.

But how about if you’re incapacitated? May a judge reason that your life — maybe lifelong disability, or mild to moderate dementia — is so wretched that a reasonable person in that position would prefer to die needlessly of staph rather than to continue living?

My answer was and is “no.” But (admittedly in more dire circumstances) many judges were saying “yes” and justifying it as “autonomy.”

I once challenged a court of appeals judge, sitting on a panel of presenters at a continuing legal education seminar, that “autonomy-by-proxy” was an oxymoron, implying that they needed a better rationale. So obviously true was my observation that her only “out” was to deny that that was what they were doing. (So of course she ended up life-tenured on a Federal court.)

But that is what they were doing. The autonomy belonged to the patient and was only autonomous when exercised by the patient. The judges were exercising counterfeit “autonomy” in the name of the patient.

5. Be a burden to your family.

You can’t get around that by appointing a friend or family member either. Insofar as you’ve lost capacity, you’ve lost control. Nobody, appointed by you or elected by fellow-citizens, can be autonomous for you. Get over it.

So what do I recommend? Proxies, like a Power of Attorney for Healthcare and/or an Appointment of Representative for Healthcare. (The titles and details tend to be state-specific.)

In other words, giving someone you trust (and ideal who loves you) the power to make decisions for you if you’re incapacitated isn’t properly autonomous, but it’s the best of a bad lot of choices — by a wide margin, too, in my opinion.

And then talk to them about your values and vague wishes before you are incapacitated.

I only had one client reject that offer, on the basis that he didn’t want to burden his family — and it turned out that he was secretly such a monster — driven by ideology, I think — that most in his family would have grieved little were he dead.

Don’t be like him.

* * * * *

[O]nce you say you are ashamed,
reading the page they hold out to you,
then such light as you have made
in your history will leave you.
They will no longer need to pursue you.
You will pursue them, begging forgiveness,
And they will not forgive you.
There is no power against them.
It is only candor that is aloof from them,
only an inward clarity, unashamed,
that they cannot reach ….

Wendell Berry, Do Not Be Ashamed

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