Wednesday, March 24, 2010

The Hope Trap

So, I did some moonlighting the other day. Shocking, I know. This was for an Infectious Diseases group, and they usually have some pretty interesting cases.

This, however, turned out to be a day of super sad cases.

The one that sticks out in my head most is a 22-year-old girl with the rarest of rare cancers diagnosed about 8 months ago. She has metastatic disease to her abdomen and lungs, causing fluid build-up in each of these cavities. We have to put a needle in her abdomen and one in each lung space every so often to drain the fluid. It keeps reaccumulating because of the tumors.

We have an expert at our hospital, so she came in for a second opinion. There is one case report of another woman who had the same cancer (different point of origin, less metastatic disease) who was alive 7 years after getting this certain chemo regimen. So the oncologist said, "What have we got to lose?"

Obviously, her parents are hoping for a miracle. The patient had gotten one round of chemo, 5 days before I saw her. I was seeing her for a possible pneumonia, which was not really a pneumonia but actually just cancer in her lungs that looked like pneumonia. But, rather than risk being wrong, we were treating her for the slim possibility of an overlying infection. It wasn't helping.

Her next round of chemo is in 6 weeks. I don't think she'll live that long. I also don't think that her cancer is going to magically melt away after one round of's just so extensive.

Should we have even given her the chemo? Are we just feeding a false hope? It's hard not to be optimistic (even stupidly optimistic) when you look a 22-year-old girl and her parents in the eyes. You really want to believe that this might work, even when you know the odds are overwhelmingly against it.

I call it the Hope Trap.

We desperately want to give good news. We want to believe that our patient will be the exception to the rule. And I think that's ok, to an extent. However, we also, simultaneously, need to be preparing the patient and her family for the likely result of death. We need to assist in that transition - just in case. We need to make death an acceptable ending and not a failure. If - no when - she dies, it's not because she didn't fight hard enough or because the doctors did give enough medications or because the parents didn't pray enough. It's just because the cancer was too deep and her body got too weak. No one failed.

Death is the natural result of living, and I think we forget that.


Ask Angie said...

I am really glad you posted about this because it has actually been weighing on my mind as a friend is caught in the Hope Trap. The other issue is that it prevents doing all those Bucket Lists things that you might still be able to do. Italy? Can't go because there is one more experimental chemo trial that might work. Pulling together everyone for an amazing celebration of life when you are still around and somewhat able to enjoy it? Nope - don't want to admit that this last ditch it'll take a miracle effort may not work. Preparing for death and fighting for life should not be mutually exclusive.

Anonymous said...

"Preparing for death and fighting for life should not be mutually exclusive." This should be on all hospital gowns. You've said it so simply and elegantly. Just because you prepare for death doesn't mean you're giving up. We all work on contigency plans everyday - if I work late and can't make dinner, what will I do instead? - if I can't get a ride to the airport, what's my plan? I don't know why dying is seen with such different eyes.

xoMeghan said...

I suspect that in at least some cases the patient is "preparing for death and fighting for life" but the family can't. Watching a loved one prepare for death is hard because it feels like they are giving up on the fight. What a difficult line to walk! People will find hope wherever they can. I think it is important to allow people to fight to the end if that is what they chose to do. On the other hand, I think doctors are in a very difficult position because patients also need a frank assessment of the costs and benefits...

As usual, you are so so impressive.

Julia said...

wow. so very hard as a doctor i'm sure. it's time like these i don't envy you.