Monday, May 20, 2013

Rational insanity: cutting off your breasts to spite cancer risk.

I am not prepared to comment on Angelina Jolie's situation.  I do not know her, I have not examined or interviewed her professionally.  I have never met her or anyone who has met her.  I wish her the best, and I am going to give her the same benefit of the doubt I would want from her.  That is, until I have enough information to decide otherwise (and I can't see how I ever will), I am going to assume that she and her doctors made the best choice for her.  This is how she describes her rationale publicly:
"My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.
Only a fraction of breast cancers result from an inherited gene mutation. Those with a defect in BRCA1 have a 65 percent risk of getting it, on average.
Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could. I made a decision to have a preventive double mastectomy. I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex."

I work with exactly these kinds of health statistics all day every day.  The notion of having your healthy breasts removed because of these statistics is insane.


I don't mean stupid or wrong, and please understand that I don't know if this was all that went into Ms. Jolie's decision.  I only know that it is what she disclosed publicly as the basis of her rationale.  

This is a decision made with an utter inattention to reality as it is.  It is a decision made in a world that doesn't really exist--the world of predictions and abstract concepts which we routinely confuse with reality. 

This is the world I live in.  I calculate, track and observe real clinical outcome statistics for an active hospice agency in New York City.  My entire reason for existence professionally is to be able to say things like "you have a 75% chance of getting your pain controlled within 48 hours if you ask us to care for you."

So, for four of these patients in this abstract concept--a hospice patient at my agency--that 75% means NOTHING.  Three of them will have a 100% pain control experience, one of them will have a 0% pain control experience.  It won't matter to the latter that the former is comfortable, or vice versa.

For the abstract patient concept, this statistical straw man who comes to hospice in pain, that theoretical concept can be rationally described using English words as "having a 75% chance of pain control with 48 hours."

The problem is we aren't treating rational theoretical concepts, we are treating human beings, individual instances of the world experiencing itself, and the numbers that apply to large groups of theoretical abstractions have NO MEANING for individual instances of human experience.

These concepts are simply a way to comfort ourselves that we know something about a world which is actually, in reality, bewilderingly complex and ever-changing.  The future, which is where, for example, Ms. Jolie's cancer illness and death would happen if it was to come to pass from expression of her BCRA genes, HAS NOT HAPPENED.

She could get hit by a bus today.  A terrorist could set off a bomb.  

Or, Big Pharma could develop a way to shut down the BCRA process, Lord knows they are working on it.

Breasts are not adornment.  We do not completely understand their role in human health, and we certainly don't understand what the consequences are of removing healthy breasts because of an idea.

I do not doubt Ms. Jolie intentions, but public endorsement of rational medical insanity does not turn out well.  The same type of argument is made by religious fanatics who surgically mutilate women's genitals, in Ms. Jolie's case, inferential prognostic medical statistics is the religion.

As a practicing priest of this religion, public endorsement of this decision reveals an incomplete understanding of our teachings.