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Life Arts

Amanda Bennett and "The Cost of Hope: The Story of a Marriage, a Family, and the Quest for Life"

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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?


AB:  Well, it was really sad.  I wouldn't have wanted to give up the fight, but I wish that we hadn't been presented with such a stark choice -- either fight or give up and go into hospice.  I think that if we had been able to think of both things together -- that we were going to fight AND that sooner or later everyone dies and we need to think about how that's going to happen -- we could have made some better choices.  It might have affected only the last week or so, maybe.  But that was a pretty important week.  


JB:  Agreed.  How has your book been received?


AB:  It's been amazing.  So many people have written -- and all their letters start with personal stories:  "My mother"...  "My husband"...  "My wife"... "My brother"... It seems that my experience has been a very common experience. It's also been good to see how many professional organizations -- cancer communities, hospices, hospitals, medical schools -- are looking for insight. I've spent a lot of the past year speaking to groups like that and finding that everyone is looking for a way to make this experience better for everyone.  


Thanksgiving, 2007, three weeks before Terence died by Amanda Bennett collection


JB:  Do you have plans with this going forward?


AB: Yes, I'm hoping to continue to help people think about this issue, to speak to groups, to help particularly with places that are trying to promote price transparency and more honest end of life discussions.  


JB:  Since Terence died, you've found love again. Yet, Terence is still very much a part of your life. Is that hard? Do you ever feel disloyal to one or both of them?


AB:  Not at all. In fact, quite the opposite. I feel incredibly lucky that somehow lightning struck twice - and I have been able to love two such extraordinary men in one lifetime!  


JB:  Good for you, Amanda!  What haven't we touched on yet?


AB: I think one important thing is money.  The health care reimbursement system by and large makes people choose between aggressive treatment and hospice.  That means that people need to essentially give up hope in order to get the benefits of hospice. I think in the future, a more porous border between the two will help people think of this subject in a more realistic way, and to think about fighting hard for a cure AND at the same time being more open to considering what the future might possibly hold.  

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Joan Brunwasser is a co-founder of Citizens for Election Reform (CER) which since 2005 existed for the sole purpose of raising the public awareness of the critical need for election reform. Our goal: to restore fair, accurate, transparent, secure elections where votes are cast in private and counted in public. Because the problems with electronic (computerized) voting systems include a lack of (more...)
 
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So many people leave the fight for a loved one won... by Amanda Bennett on Friday, Aug 30, 2013 at 1:25:25 PM