If the medical system is always going to be saying -- well, we can't do this or that because the family is in denial -- then it's always going to be hard to move to the next level. Because sooner or later, everyone dies, so how do we make this transition more effectively? To get people to think constructively about the full range of the illness -- recognize that hope/denial is a very useful, very human emotion and that we can't stop it and we don't want to take it away, but maybe we can AUGMENT it with some additional thinking about how we will recognize a change, and what we might want to do if we see that change.
last family photo, in front of our favorite Chinese restaurant, 2007 by Amanda Bennett collection
JB: Over the long course of Terence's illness, you moved at least once and changed health insurance companies, too. So, when you went back in to analyze the cost of his treatment, you had some advantages that the average person does not. Can you talk about that?
AB: Yes. After Terence died, I went back and got all our records. Because we had moved so much, I was able to see the way different hospitals in different parts of the country charged for the same thing. And there were wide variations. More interesting, though, was that because my employer was sold during a time that Terence was undergoing intensive treatment, I was able to see what the charges were for the exact procedure when nothing had changed but the insurance company that was paying.
So, one month, his CAT scan was paid by UnitedHealth and it cost my employer $2,586.60. Three months later, after the sale, the new insurer, Blue Cross, paid $775.68. And at that time, Medicare was reimbursing $250.94 for the same procedure. It was the same hospital, same patient, probably even the same machine. The only thing that had changed was the insurance company. What's that all about? It didn't mean a ton to me, because my employer was picking up the tab. But now that co-pays are getting so much higher, it's going to mean that people are going to be paying wildly different amounts for the same thing, often not knowing why -- or even knowing in advance how much it was going to cost.
Terence's medical records by Amanda Bennett collection
JB: That's interesting and indeed relevant to our national current health care conversation. On a personal level, how helpful was it to turn your investigative eye on this, Amanda? Did it help you heal?
AB: I loved doing it! Writing is what writers do when something happens to them. I felt like I was doing something useful. I totally felt that he was supporting the project - he was so into learning everything he could about everything that I felt him cheering me on. And also, just selfishly, as you point out, he was a piece of work. So doing the book gave me an excuse to spend an extra year with him -- going through photos and videos and all his projects and piles of things and letters and notes. It was fun.
taken in Philadelphia by a Pulitzer-Prize winning photographer,a great friend of ours in China by Amanda Bennett collection, taken by Neal Ulevich
JB: Because the two of you were so focused on the fight, you didn't really get to say goodbye as you might have wanted. What was that like?
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