Refusing treatment… when you’re 17…

of scars, me..

Cassandra from Connecticut refusing chemo…

Read the article in the link — the basics are this — the patient has Hodgkin’s Lymphoma — she’s 17 and, with the support of her mother, is refusing chemo.  The doctors think this is a bad idea, so they got DCS involved, along with the courts, to make her get treatment… If Cassandra were 18, she’d be able to legally refuse the treatment.

I have kind of a lot to say about this — so I’ll start with the relevant background..

The reason you see my photo on the top of this post is that I had breast cancer in 2008 — I did chemo, had a mastectomy, and then participated in a photo project about breast cancer scars — called “Of Scars” — I’m reminded every day that I had cancer and that my body has changed as a result.  I’d also do chemo again without hesitation…

Being told you have cancer and need chemo is scary — it just is.  They tell you all kinds of horrible things about the side-effects, they tell you that even if you get sick from the chemo, it may not work etc… they tell you you run a risk of infertility, that your hair will fall out, you’ll have trouble with nausea, you’ll have mouth sores, fatigue, cognitive problems, numbness in your hands and feet — and a lot more that I don’t remember.

You see chemo patients on the TV all the time — looking pathetic, about to die with the bag hooked up etc.. you’ve probably already been to the cancer clinic and saw the folks in the waiting room — it really does look more or less like the Grim Reaper’s ‘to do’ list — and it’s scary, it’s just plain scary.  The first few treatments are probably the worst.  Sooner or later you learn new limits (eat bland stuff like chicken nuggets and corn dogs, take lots of naps, drink lots of water etc..) — and you figure out that the rest of your life continues even though you’re in chemo.

So — I get it — in  a very basic way, chemo is scary… but death is scarier — and cancer WILL kill you.  Hodgekins lymphoma means you’ll probably die of infections your body can’t fight, or a swelling tumor will choke you… it doesn’t go away on it’s own, with good food and prayer.  It just doesn’t.

I understand that Cassandra and her mom are scared.  They want to put poison into her body.  It’s likely to make her sick.  She’s going to feel crummy, then she’ll live — that’s the doctor’s position (as far as I know it).  Refusing this kind of treatment, with the high likelihood of success, is seen as child abuse by the court.

I also see the other side — for WHATEVER reason, a person ought to be able to make choices about what happens or doesn’t happen to their body.  If Cassandra’s treatment were happening less than 1 year later, she’d be legally able to refuse that treatment, and to force it on her would require a ruling of incompetence to make her own decisions — that’s a big thing… and a high bar — as well it should be.

I get it, Cassandra should be able to make a decision about her own body — whether it’s about getting a tatoo, gaining or losing weight, working out, having sex, not having sex etc… it’s about the most basic freedom we can have.  It’s the last thing that gets taken away from people when they’ve broken the social contract and it’s a sign that, as a society, we respect the autonomy of the individual.

Forcing Cassandra to have treatment MAY be for the greater overall good (Mill would like that, I think..), but it violates Cassandra’s inherent right to make choices that determine her future — i.e. something Kant thinks is at the root of the autonomy that makes us human.

Yikes — what would I do… I think I’d have to sit with Cassandra and her mother (because, Mom is a huge factor in this) — and lay it on the line…. Chemo IS terrible, but dying an early and painful death that could have been prevented is worse…

Specifically to Mom — I’d have to probe her reasoning in support of not having Chemo — as parents we tell our kids all the time that they need to do things that aren’t pleasant, but are good for them (eat your oatmeal, wait to cross the street, do your homework, clean your room etc..).  This is just an extreme case of that.

I’d also ask her about what has been reported as her central concern, that Cassandra won’t be able to have kids later — ummm… WHAT?  Of all the things, this is the one that is most pressing?  You certainly can’t have kids if you’re DEAD.  There are many other ways to raise kids other than giving birth to them, and — really — are you saying you prefer a slightly higher chance of grandchildren to the life of your LIVING daughter?  Is being a grandma all that for you?  Are you prepared to raise those theoretical grand-babies, because their mom’s cancer killed her when they were toddlers?  Really?

For Cassandra — I’d ask her to really think about having a few unpleasant months, and a healthy life afterward.  Sure, the first few chemo sessions suck (and no two chemo regimes are similar, really) — and the prospect of not having kids, when you’re 17 seems pretty bleak — but, there are lots of other things that can go well in your life if you survive this cancer.  You’re likely to live another 60 years… another 4 times as long as you’ve already lived…

You should also think really carefully about this choice — and how much your mom is influencing you.  Are you comfortable with the information she’s using to push you to refuse?  Is she actually pushing you?  Are you sure that you agree that you shouldn’t have the treatment?  Is she freaking out because you have cancer, and her advice is driven by panic and psuedo-science rather than logic and medical information?

Also — there’s the issue of Cassandra’s age…

I don’t know if she’s a fully-informed and average 17 year-old — but, I’m going to assume she is.  If she’d been born less than a year earlier, she’d be legally allowed to make this decision.  1 year makes a HUGE difference if you’re talking about the first decade of a person’s life, and less if you’re talking about the second decade… the growth in people’s maturity level slows a lot once human beings become teenagers.

In many societies — past and present — 17 year-olds are treated like adults.  In Europe, they can drink, in many developing countries they work as adults, get married, have children, and ARE adults… In our country, they can drive, access the internet etc.. and are about to graduate from high school.  Some 17 year-olds ARE parents already, and some ARE college students already…

So, if I were the doctor making the final decision, I’d want to see what Cassandra has to say about it — I’d ask a lot of questions (because she IS still legally a minor) and if I were persuaded that she actually is making a fully-informed and independent decision, I’d support her choice not to have treatment.  Of course, I’d tell her all the reasons she should have treatment etc — I’d introduce her to patients who are getting the treatment now, i’d give her reading etc… but, in the end, if she wants to decline treatment, she should be able to do so.

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Filed under Applied Ethics, Medical Ethics

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