The Right to Make Bad Choices

We talk a lot about making our health care system "patient-centered" and "empowering patients," but sometimes it seems that means only when they make choices we like.

Take, as Exhibit 1, the case of Cassandra C.

In case you have not been following the story, Cassandra C is a 17-year-old who was diagnosed with Hodgkin's lymphoma last September, and chemotherapy was recommended.  According to her recount of the saga, she and her mother wanted to get a second opinion, but the time spent doing so triggered her mother being reported to the Department of Children and Families.  Cassandra was placed in a foster home, and was only returned to her mother with the promise to undergo chemotherapy, which she did for two days.  That was enough for her; she ran away from home to escape the treatment.

Cassandra returned home after a week, and was hospitalized -- confined to a room with limited freedom.  The hospital subsequently resumed chemotherapy against her wishes.  As she writes: "I was strapped to a bed by my wrists and ankles and sedated. I woke up in the recovery room with a port surgically placed in my chest. I was outraged and felt completely violated."

Last week the Connecticut Supreme Court ruled that she had failed to prove she was a "mature minor" able to make her own medical decisions (Connecticut doesn't even have a "mature minor" law, as is also true of 32 other states), thus allowing the chemo to continue.

I'd probably feel different about Cassandra's situation if her mother was urging her to get the chemo, but she's not.  It's got to be impossibly hard to support your daughter when she is willing to risk her life on principle, but when they both agree on this painful choice, who are we to disagree?

The good news, such as it is, is that experts say her lymphoma is highly treatable.  They claim the chemo gives her an 85% chance of survival, versus a life expectancy of only two years without it.  Certainly the state, and the medical professionals involved in her care, are acting in her best interests, right?

I wonder where the court and her doctors would draw the line.  What if, say, instead of the 85% success rate the chemo only had a 50/50 chance of saving her?  Or 25%?  Or what if, instead of curing her, it "only" offered her an extra six months of life?  Would they still insist on a painful course of action Cassandra didn't want?

The court ruling on Cassandra's dilemma provides new opportunities for forced interventions.  Why shouldn't the authorities be able to prescribe bariatric surgery for morbidly obese teens?  Why not unilaterally put teen drug addicts -- or smokers -- in rehab?  Why not force the hospitalization of high-risk pregnant teens to help reduce infant mortality?

Yes, there are lots of interventions that the court ruling would seem to allow.  And they'd be wrong too.

While I'm sure all the parties are doing what they think is best for Cassandra, the point is that it shouldn't be anyone's choice other than hers.  Yes, 17 year-olds do a lot of immature things, some of which can be life-threatening (e.g., texting while driving).  Cassandra probably didn't help demonstrate her maturity by running away.  But here's her take on the situation:

This experience has been a continuous nightmare. I want the right to make my medical decisions. It's disgusting that I'm fighting for a right that I and anyone in my situation should already have. This is my life and my body, not DCF's and not the state's. I am a human — I should be able to decide if I do or don't want chemotherapy. Whether I live 17 years or 100 years should not be anyone's choice but mine.

As Cassandra also says, "I care about the quality of my life, not just the quantity."

If any of that sounds like an immature person not able to make and articulate her own choices, I know a number of so-called adults that the Connecticut Supreme Court should take some rights away from.

The problem isn't just about Cassandra and Connecticut, nor about teenagers below the legal age of informed consent.  It's much broader than that.  As Exhibit 2, consider advanced directives.

Last summer The New York Times wrote a disturbing piece about how advanced directives are often ignored.  It cited a national study that concluded that having an advanced directive has little effect on whether or how often people were hospitalized, or whether they died in the hospital.  Whether your end-of-life preferences will be honored has more to do with how the physicians in your area practice, a problem the Dartmouth Atlas has been hammering home on more generally for the past 30 years.

Many health care providers worry about being sued for failing to do all that they can for patients, and there may be some truth to that -- although probably not enough to justify the scale on which patient wishes are ignored.  It's more likely to be an artifact of our expectations, both on the part of patients and health care providers. Modern medicine gives us many powerful weapons, but -- as any Spiderman fan knows -- with great power comes great responsibility.

We all see people every day who make what we think are bad choices, and we may wish we had the power to decide for them.  But, fortunately, we don't live in a society where we can usually do that.  Reason with them, cajole them, make sure they are fully informed about the consequences of their choices -- sure, we should do all those, and I hope all that has been done for Cassandra.  But the bottom line for me is that giving people choice means sometimes they will make bad choices, or at least choices with which we don't agree.

If Cassandra gets through the chemo and beats the Hodgkin's, she may go on to live a happy life.  Decades from now, she may look back on all this and think, gosh, if I'd gotten my way, I'd be long dead and missed so much.  Proponents of her forced treatment might then feel vindicated.  But you don't get do-overs in life; if we take the road of taking health decisions away from people, it's hard to see where it will head.  Nowhere I want to go, anyway.

In Greek mythology, Cassandra had the gift of prophecy, but was cursed in that no one would believe her predictions.  Cassandra C. may be warning us about our future, and I hope we pay attention.