While visiting Sarasota, FL a couple weeks ago, I missed this article in the New York Times, When Doctors Steal Hope.
Maybe it’s just as well. I would have been one of the first to add my comments, but maybe my own blog is a better forum for that? My advocacy colleague Julia Schopick made her comment — well thought out, as usual.
The article is a blog/commentary about what happens when doctors tell a family that a loved one will die, only to have that loved one recover and go on to heal. In other words, the doctors have stolen hope — for no good reason, it might seem.
I had the same experience – I was told I would be dead within months and that I needed chemotherapy which, even if I had it, would only buy me an extra year of life.
So did my doctors steal hope? Actually — only to an extent. In fact, because I am of the personality I am, I saw my diagnosis instead as waving a red flag in front of me which just p*ssed me off enough so I could prove them wrong!
That said — what the real bottom line is to this issue is the management of expectations. It’s fairly simple concept, yet, it is violated day in and day out by all parties all the time. It’s true in medicine, but it’s also true in any aspect of life where communications is important — in the workplace, at home, with your spouse or sigO, your children, your friends, anyone at all.
A simple metaphor: Little Johnnie wants a new bicycle. His mother tells him that if he gets all As on his report card, she will buy him a new bicycle for his birthday next July. Little Johnnie works very hard in school and gets one A after the next A after the next — BUT — on one of his report cards, he gets a B in math. He’s very upset with himself.
But Johnnie’s mother buys him a bicycle for his birthday anyway — because the point was for Johnnie to work hard, and that’s what he did.
In this case, his mother managed Johnnie’s expectations — he knew exactly what to expect, and he knew what his role was in making it happen. Ultimately, even though the outcome was a bit different from what was expected, it was win-win for them both.
Suppose Johnnie’s mother had just told Johnnie he had to “work harder” or “get better grades” — meaning — she wasn’t specific enough? Johnnie might have thought Bs were OK — and that would not have gotten him the bike. And everyone would have been disappointed.
The point to this story is just that when we are sick, or a loved one is, there are ways our expectations can be managed to make sure we fall within a set of expectations. Clearly, patients don’t always have control over their health. And clearly, the health care professionals can only do so much. BUT — there are boundaries that can be expressed — for example:
“We’ll keep an eye on your husband, Mrs. Smith. If his blood pressure drops again, we might lose him…. but if it stays stable, there is a better chance he will recover. That’s not a promise because we never know what else can go wrong — but we know his blood pressure needs to stabilize to give him his best chances.”
Then — because Mrs Smith is a wise patient — she will repeat back to the doctor exactly what she heard. (and if the doctor is wise, he will ask Mrs. Smith to repeat it back to him to be sure she is clear on it.)
And if the doctor doesn’t give Mrs. Smith those parameters? Then she should ask! “Doctor, what’s the worst case scenario? And what’s the best case? And based on your experience, what is the expectation?”
It’s communication — plain and simple!! Subtracting –OR providing hope is about words — not about medicine. And asking for clarification, and management of expectations, is how an empowered patient works collaboratively with her doctors.
few miscellaneous, but no less important, points and thoughts to share. I don’t want them to get lost, so I’ll just put them all here…. a potpourri of information. This may become a Saturday or weekend habit. Seems like a good idea!
Yanking the Cure Rug Out From Under Lymphoma Patients
Published December 13, 2007 Cancer , Health , Health /Medical Consumerism , Health Insurance , Healthcare Quality , Hospitals , Medical , Medical Commentary , Newspapers , Patient Empowerment , Patients , Pharmaceutical Drugs Leave a CommentTags: bexxar, lymphoma, medicare, non-Hodgkins, zevalin
In the continuing saga of two “miracle” drugs for those who suffer from non-Hodgkins lymphomas… the fifth most common cancer….
I told you six months ago about Bexxar and Zevalin, the two drugs which can treat non-Hodgkins lymphoma but were not being promoted by oncologists in private practice because they cannot, by law, administer it. That means they cannot profit by it. Remembering that American Healthcare is not about health or care, it’s about sickness and money…. we learned then that these drugs must be administered in (usually academic) medical centers because they have a radioactive component to them. So many oncologists provide infusion services themselves, but are not allowed to administer these two drugs, so they don’t tell their patients about them. I remain angry about that subject.
As if that weren’t difficult enough, there is now a new twist to this story, making it even more difficult for lymphoma patients to get this treatment they need — and deserve to have. According to the New York Times, Medicare has decided to reimburse administration of this drug in 2008 at about half the cost of the drug. Medicare made that determination, it says, based on what hospitals have been billing Medicare for the drug — but hospitals dispute that, saying they would never request reimbursement that would cost them almost $10,000 per patient! Patients need only one treatment, but it’s very expensive because the drug itself is very expensive.
Both hospitals and the manufacturers are confused as to how Medicare put together its reimbursement schedule. They believe errors have been made, and that Medicare’s numbers are wrong.
So here’s how this begins to domino….
Find the rest of this post at the new location of the Every Patient’s Advocate blog….
http://trishatorrey.com/2007/12/13/yanking-the-cure-rug-out-from-under-lymphoma-patients/