June 4, 2012 – The High Cost of Dying

An article in the June 4 & 11 issue of Newsweek lays it on the line, as far as the high cost of medical treatment in this country is concerned.  Case in point: Terence Foley, who died in December of 2007 after years of treatment for a rare kidney cancer. His wife, Amanda Bennett, tells their story in an article excerpted from her new book, The Cost of Hope: A Memoir (Random House, 2012).

Simply as an exercise in accounting, the figures for Amanda’s husband’s final month or so of treatment are jaw-dropping: $33,382 for one hospital stay, $43,711 for the next, and $14,022 for his final three days of life.

Amanda doesn’t begrudge the more than 90 grand her family and their medical insurer laid out in order to buy her husband a few more weeks, even though his quality of life was poor. She says she would have given approval for even more spending, had someone convinced her it would bring any real hope of achieving a remission or cure.

But that’s the root of the problem.  The higher you climb up the pyramid of the medical-treatment establishment and into the rarefied air of physician egos - not to mention the threat of legal liability - the more reluctant many specialists are to admit that any of their patients are likely to die on their watch.  They find it easier to simply order another MRI and hope it reveals something different than the last one did.

In a related video on the Newsweek/Daily Beast website, Amanda passes on a bit of practical wisdom one of her husband’s doctors shared with her, in a rare moment of candor: “We’ve got a terrific medical establishment. We do great things.  But we’ve never made anybody immortal.”



Several years after Terence’s death, Amanda gathered up her late husband’s medical records as she began researching her book.  As she commenced reading, she became aware of something no one had noticed at the time.  Everyone on Terence’s medical team knew his chances of survival were slim, and getting slimmer.  Yet, no one had been perceptive – nay, courageous – enough to blow the whistle and say, “Wait a minute, I think some of this may be getting excessive.”

In Amanda’s words: “I didn’t realize that they had prodded and X-rayed and scanned and tested him even though they thought he was dying.  Soon.  The discharge record after his four-day stay expresses regret that they could offer no more than ‘comfort care.’”

But still, during those days the tests and procedures just kept coming.

It’s true, we’ve got an amazing medical system in this country – especially in teaching hospitals like the University of Pennsylvania Medical Center, where Terence received his care.  I feel the same way about Memorial Sloan-Kettering, and even – for more routine needs – about our excellent community hospital, Ocean Medical Center. The problem is, in whatever hospital, once a crowd of specialists starts milling around a patient, each putting shoulder to the wheel of the aggressive-treatment juggernaut, it’s very difficult to stop it, nor even to slow its progress enough to assess whether every possible treatment is a good idea.

Amanda found that, in a major medical center like UPenn, it can be hard to simply keep track of all the people who are making medical decisions: “Over the stay, at least 29 professionals – nurses, physical therapists, a nutritionist, and nine M.D.s – attended to his needs.  We had never met any of them before, and I don’t recall meeting the majority of them even then.”

Typically, the specialists deal with only one tiny segment of the patient’s medical issues, reserving judgment on other problems that belong to a colleague’s turf.  OK, maybe a cardiologist wants to order a CT scan to take another look at how the heart’s doing – but is that costly scan really better than less-expensive diagnostic methods, if the patient’s kidneys are about to shut down for good?  Amanda began to suspect she was “the only person seeing Terence as a whole person instead of just a single piece of his body that needed attention.”

Moreover, Amanda found that most doctors have only the sketchiest awareness of how much certain tests and procedures are going to cost.  Medical insurance in America has evolved into such byzantine complexity that another sort of specialist – an insurance expert – is required to run the numbers.  This rarely happens until after the treatment has been ordered and completed. The consequence?  It’s all but impossible for patients and their families to make intelligent decisions, in real time, based on what certain treatments are going to cost.  Heck, the doctors themselves don’t even know.

It’s no wonder they don’t, because every insurance company is allowed to function like a vacationer shopping for a weekend hotel deal on Priceline.  Each company’s got their own William Shatner “Negotiator” character, whose job is to intimidate doctors and hospitals into allowing the insurance company’s executives to name their own price.  The result?  In going over her late husband’s medical records, Amanda and her researcher found that “the same CT scan, in the same hospital, cost $776 or $2,586, depending on which insurance company was paying.”

Is this free enterprise?  Sounds more like piracy to me.  (Although, in fairness, maybe that’s too strong a term.  “Privateers” is more like it.  Students of naval history know the privateers functioned more or less like pirates, except for the fact that their captains carried government-issued Letters of Marque allowing them to “name their own price” for captured enemy shipping.  Arrrgh, mateys, haul down the Jolly Roger and raise the comely pennant o’ Blue Cross/Blue Shield!)

In the overcrowded insurance marketplace, our medical-billing machinery has achieved such a level of complexity that it’s become a major cost center in and of itself.  Amanda cites a figure of 31% for the average cost of paperwork, much of it related to billing.  That’s nearly one-third of every healthcare dollar.  Granted, some paperwork will always be necessary, but even so, a shockingly high portion of every health-care dollar is devoted to paying for the insurance companies’ overhead, just so we can fool ourselves into thinking we’re maintaining free enterprise in an open marketplace.

Does preserving competition in the world of medical insurance result in such massive savings that they offset this absurdly-inflated cost of paperwork?  Not a chance.  But few people ever think about that.  We’re paying to solve one problem, only to create another that’s costing us even more.

I know from personal experience (based on the years we lived in Britain) that a single-payer system like Britain’s National Health System doesn’t have that problem.  That’s because there’s no patient billing, no multiple mailings, no collections. The government gets the bill, not the patient.  Think of it: No patient billing. Just imagine how much that would save us in paperwork!

But, no, we couldn’t do that.  Not here in America.  That would be – cover your tender ears, now, children, because I’m about to utter an ugly word –  “socialism.”

(Of course, everyone in America who's older than their mid-sixties already benefits from a government-funded medical-insurance system – Medicare.  I suppose it must stop being socialism, though, once the recipient passes the golden age of Medicare eligibility.)

Amanda points out that, in the last Presidential election, Sarah Palin stirred up a tempest of outrage with her dire warnings about “death panels” – which were, in fact, merely Medicare’s proposal that the confusing, ever-shifting constellation of medical professionals treating seriously-ill patients sit down and talk with each other every once in a while.  Amanda has a very different take on it: “The scary phrase suggested a harsh group of executioners ready to pull the plug on Granny to save money. I began to think of it in a different way: wouldn’t it have been great, as death became inevitable, to have had some help figuring this all out?”

She ends her article by observing that the cumulative, seven-year bill for her husband’s care was a whopping $618,646.  While she admits she honestly doesn’t know – had they realized the true cost – how much of his treatment they would have declined, she does know this about the kind of person her husband was: “I believe he would have liked the chance to play a more active role in how we spent enough money to vaccinate 600,000 children in the developing world.”

Were I in his place, I think I would, too.