I got life

8 01 2015

Stipulated: Adults get to make whatever boneheaded medical decisions about themselves that they want.

Stipulated: Adults do not get to make whatever boneheaded medical decisions about their children that they want.

Question: Ought a 17-year-old be able to make a boneheaded medical decision about herself?

Cassandra C. is a 17-year-old with Hodgkin lymphoma, a disease which, when treated with chemotherapy, has a high (80-85%) survival rate. Cassandra initially underwent surgery, then two rounds of chemo, before deciding that while she wants to live, she wants to do so without, in the words of her mother, Jackie Fortin, putting “poison” in her body.

It’s not a stretch for a layperson to consider chemo a poison: the patient ingests the drugs with the idea that they will kill the cancer without killing her, and it is the lucky, lucky cancer patient who isn’t sickened by this treatment.

But it is a stretch to think that there exists some other, effective, non-poisonous treatment for Hodgkin’s, not least because there is no good evidence of its existence. Some (#notall. . .) alt-med folks may think oncologists are in league with pharma companies to hide cheap and easy cures to nasty diseases, but I highly doubt there is a conspiracy of cancer docs to keep effective treatments away from their patients just so they can profit from their suffering.

In any case, if Cassandra were 18, she could cease the chemo in search of those non-poisonous treatments, but at not-quite-17-and-a-half, she’s been confined to medical ward by Connecticut state officials and forced to undergo treatment; the Connecticut Supreme Court just reaffirmed that decision by those officials.

Art Caplan (from whom I took a class when he was at Minnesota) wrote a brief editorial that 17 is 17—that is, not 18, and therefore unable to medical decisions on her own behalf. I get the technical point (1718), but I’m not so sure that the consequentialist argument Caplan goes on to make—Hodgkin lymphoma is treatable—ought to carry the day.

After all, if she turned 18 tomorrow, the lymphoma would remain just as treatable, and the absence of that treatment would leave her just as dead.

Cassandra told the AP that

it disgusts her to have “such toxic harmful drugs” in her body and she’d like to explore alternative treatments. She said by text she understands “death is the outcome of refusing chemo” but believes in “the quality of my life, not the quantity.”

“Being forced into the surgery and chemo has traumatized me,” Cassandra wrote in her text. “I do believe I am mature enough to make the decision to refuse the chemo, but it shouldn’t be about maturity, it should be a given human right to decide what you want and don’t want for your own body.”

It is about maturity, actually; the difficulty is determining what counts as maturity?

Is it just about age? Reach 18 years and you’re mature; prior to that, not.

That has both the benefit and drawback of simplicity. It’s a straightforward standard, but one which, strictly applied, seems nonsensical, ascribing a substantive ethical property to passage of time : “January 1 you’re immature, but October 1 you’re mature.”

Age matters—if Cassandra were 10, I’d think there was no ethical problem—but largely as a stand-in for other properties, including the ability to make decisions.

So is maturity about decision-making ability? Well, okay, but what does this mean? Is this about making good (by whatever metric) decisions? And what if someone repeatedly makes bad (b.w.m.) decisions?

If their adults, and those decisions are of a non-criminal nature, we say, Okay, but largely because most of us don’t want to live in a society where we don’t get make decisions about our own lives. We assert the procedural right to decide, regardless of the content of the decision, because we’d rather make our own decisions (good and bad) than have others make them for us.

But teenagers, man, teenagers get to make some decisions and not others, and figuring out what decisions they get to make often does come down to the content of those decisions. If the kid makes good decisions (as determined by the parents), he’s given the leeway to make even more; if not, then not.

And thus the Connecticut Supreme Court has judged the procedural ability of Cassandra to make her own medical decisions on the content of those decisions: it thinks she’s decided badly, and as a result, ought not be able to decide at all.

I get this, I do, but I am made uneasy by it.  What if she had a different disease, with a much lower (40 percent? 30?) survival rate? What if the treatment were more disabling over the long-term? Or what if she doesn’t respond to the treatment? Is there any amount of suffering from the treatment that would lead the hospital to stop?

Or will they only stop when Cassandra turns 18, and is free to decide for herself, whatever the content of that decision?

This is a tough case, and I don’t know that the Court got it wrong. I just don’t know if they got it right, either.

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One response

9 01 2015
dmfant

without going all Derrida this sort of thing ” It’s a straightforward standard, but one which, strictly applied, seems nonsensical, ascribing a substantive ethical property to passage of time” was what drove me out of practicing medical ethics, most folks involved either couldn’t see that these sorts of standards were non-sense or had some mistaken faith in technology/testing that we could draw/ground such clear distinctions with more psychology or such.
be interested in yer take on:
http://syntheticzero.net/2014/01/07/assembling-ethics-in-an-ecology-of-ignorance-paul-rabinow/

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