Stealing Hope – Managing Expectations

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.

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2 thoughts on “Stealing Hope – Managing Expectations”

  1. I just came across your blog and I’m in 100% total agreement that doctors need to learn to communicate with their patients and think about making patients feel hopeless.

    We moved to a new state in the past year and finding new doctors is always hard. I have a chronic liver condition that I’ve had for 27 years. When we made our first move to another state a little over 10 years ago, that new doc also tried to re-diagnose me with horrible results! He finally admitted that they don’t really know what is wrong with me. This new doc in my new state also wants to diagnose me with the same thing the former doc thought, but…..this new doc does NOT listen! From day one, I felt that he didn’t listen to a word I said! He should have asked more questions, but he just wanted to order tests. On my last visit, he proceeded to lecture me and use scare tactics to get me to agree to another expensive test! And then today, his nurse called with further information about my blood work (that was done in September) and tell me I needed to go to a hematologist. This last piece of news is nothing new to me; I’ve also known about this for 27 years!

    I will NOT be seeing this doc again because he does NOT listen; he just wants to be RIGHT! When I came out of his office last week, I felt the he wanted me to feel hopeless and that isn’t right. So….I’m going to another doc tomorrow and she is wonderful. She will listen to me and let me participate in my care instead of trying to bully me into it.

    Oh, yes, the other doc never even physically examined my liver during either of the two office visits, plus he wanted to dismiss the ultrasound findings which showed no scarring or enlargement of the liver….and he didn’t seem to like it when I said I felt well!

  2. Listening and being sure that patients understand is cost effective from the business standpoint of a physician. It would save them time, which we know in managed care = money. Being able to communicate to people should be one of the criteria of becoming and remaining a doctor. What an amazing thought!

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Trisha Torrey
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