Happier If They Give Up Hope

A recent study led one of the authors to conclude, "Holding on to hope may not make patients happier as they deal with chronic illness or diseases." If so, this shoots a hole in my knowledge-hope-action approach to Healthy Survivorship. What now?

According to an article in the Science Daily , a study done at the University Of Michigan Health System looked at patients who had their colons removed. Some patients were told it was temporary, while others were told that they'd have to wear a bag forever.

Over the next six months, the group of patients who believed their colostomy was temporary were less happy than those who were told it was forever after.

Dr. Peter A. Ubel explains: The patients who were told their colostomies were permanent "were happier because they got on with their lives...[T]he other patients contrasted their current life with the life they hoped to lead, and didn't make the best of their current situation." Ubel concludes, "...be careful about building up people's hope so much that they put off living their lives."

I see many problems with his conclusions. [11/07/09 Addendum: While waiting to receive a copy of the original paper from the library, I emailed Dr. Ubel, asking him if the group told their colostomies were temporary did have their colostomies reversed after a few months. He kindly responded, "yes."

Although my point below is in keeping with Healthy Survivorship, given the new piece of information it is no longer germane to this example. I will continue to explore this issue of hope and happiness in the next few posts.]

First, most Healthy Survivors don't hope for impossibilities. In this case, most patients know that a total colectomy is irreversible. Certainly they are likely to hear the truth from friends or family, or from surfing the Internet. The conflicting information can contribute to unhappiness.

Healthy Survivors learn the truth about what is (and is not) possible to avoid this source of unhappiness.

Tomorrow I'll explain how Healthy Survivors find happiness when they yearn for the unlikely outcome.

Comments

[Joni Rodgers]

You're so right, Wendy. I think Ubel's definition of hope is very different from mine. He seems to equate hope with denial and a state of limbo, while you connect it to knowledge and a plan for action.

[Wendy S. Harpham, MD]

Dear Joni,
I agree. And he seems to equate "hope" with "the desire for everything to be healthy and normal."

Healthy Survivorship is based on dealing with reality. As I'll explore in upcoming posts, Healthy Survivors deal with the truth in ways that help them (1) get good care and (2) live as fully as possible. Stay tuned!

With hope, Wendy

[Lori Hope]

Wendy, I am so with you on this. Wish I had time to post a more thoughtful comment, but am heading out the door. Look forward to your follow-up post, and thanks for writing about this.
Lori
www.lorihope.com

[Kairol Rosenthal]

I actually have to agree with the author of the study. There are a ton of patients out there who are so undereducated about their health that I can fully believe they and their families might think a colostomy is reversible. While many people do research online, it is not always well informed research. I think in the blog work, we tend to have contact with really empowered patients, but I meet so many people in the trenches who have no idea what is going on with their bodies and if told there was hope would believe it.

For me personally, hope doesn't contribute much to my medical situation one way or another. I want there to be a cure for my cancer. I want scientists and funders to make smart policy decisions and research decision that could lead to this. Some people might call this hope - to me it doesn't matter so much what it is called.

I do have to say that I have found much relief in the past year since I have finally found a doctor at Memorial Sloan Kettering who agrees that we must stop trying to give me more surgery and more treatment because they are not work. Such a relief to face the reality of my situation than talk to docs who were off base that I was some how going to be cured from procedures we have tried multiple times that don't work.

Interesting post. Excited to read tomorrow's.

Kairol
http://everythingchangesbook.com/

[Wendy S. Harpham, M.D.]

Thanks for commenting,Kairol. Regarding under- and uneducated patients, I agree that some people will know only what their physicians tell them. Or they will only believe what their physicians tell them. In these cases, I have another explanation for the counterintuitive results found in the trial (to be explained in my forthcoming post).

As for your statement that hope doesn't contribute to your medical situation, are you saying that hope won't affect how you are doing medically? If so, this is a central concept of Healthy Survivorship, so I will continue to tackle it on this blog.

And it sounds like you and I are on the same page when it comes to preferring to deal with reality. In the early 1990s, when repeated remissions made long-term survival increasingly unlikely for me, I told my oncologist, "Please tell me straight what you think about my situation. Don't try to make it okay. If you have bad news, I'd rather hear it and then deal with it."
With hope, Wendy

[Richard Frank, MD]

Wendy,

I believe your distinction between hope and expectation are key here and in all difficult situations. You define the difference, allow both and temper hope by the realism of expectation. Expand on this again please.

Rich

[Wendy S. Harpham, M.D.]

Dear Dr. Frank,
You are right on target, which thrills me no end. Hang in there with me as I illustrate how "hopeful acceptance" (also known as "acceptance with hope") can emerge in the setting of chronic illness or injury.
With hope, Wendy

[ria]

Ah, yes, reading your post&Kairol's comment, I'm not sure how I am with regards to hope. Throughout, I've been trying to stay comfortable in the 'not knowing,' while waiting for results or a diagnosis. But maybe I was (also) 'afraid' to hope, since it/mine gets shattered often enough... I do remember that when friends and acquaintances wanted me to stay positive, or told me to 'hope for the best,' I always consistently answered :"I don't know. The docs don't know (yet). We'll see (and deal)."

[Wendy S. Harpham, M.D.]

Dear Ria,
Well then I'm glad I'm discussing hope on my blog. We have lots yet to explore before I'm done.
With hope, Wendy

[Cancer Diseases]

very good working

[hope]

Dear Dr. Harpham,

As always, the topic speaks to alot on Tom's card. Hope is a very intimate part of wellness, illness,and in-between. #7 speaks to both sides of choice with respect and both hold hope.

For those perhaps not familiar with tom's card/writtings:Daily Survival Kit for Serious Illness by Thomas l. Mcdermitt. Dr. Harpham very generously provided link on her 08/01/ 08 posting: http://wendyharpham.typepad.com/healthy_survivorship/2008/08/daily-survival-kit-for-serious-illness.html.

As always, many warm thoughts and thank you.
Sincerely, Hope.