Tell It Like It Is.

One of the things I dislike the most about my job is expectation management. You know, making sure people don’t expect miracles and get depressed when they don’t happen, because that could make things even worse than they already are.

For example, today I had my first follow-up with a patient that we diagnosed with a progressive interstitial lung disease…basically, his lung tissue is slowly turning into scar tissue. (Scar tissue does not pass oxygen the way lung tissue does, and while functional lung tissue can turn into scar tissue, scar tissue can’t turn into functional lung tissue….so I guess you can see where that’s going.) We did a couple of things at his initial appointment that got him feeling a lot better: he’s now on portable oxygen, so he can walk upstairs to his apartment without having to stop on each floor, etc. Which is awesome.

But what kills me is that then he turned to me and said, “Doc, I feel like my body is breaking down the disease in my lungs, and it’ll just keep getting better.”

And my heart sank. Because then I had to bring out my ugly, ugly truth-needle and pop that poor, hopeful bubble. Because he’s not going to get better. This thing will kill him far earlier than he should have died. Of course, I didn’t say that in as many words. But I did have to tell him that his lung disease wasn’t going to go away, that we can manage things and try to keep them the way they are now, but that this is probably the best it’s going to get.

I. Hate. Killing. Hope.

But it’s better to trim it down a little to a more of a realistic view now that he can grow to accept, than to let his expectations eat him alive and make him end his life with anger, confusion, depression, and betrayal.

Honesty is still the best policy. Even when the truth is ugly. Because people deserve to know what’s going on.

I can only hope that they understand.

(And once again, it’s always the nice people that have the worst diseases.)

(Today was not a very good day.)

(I feel like there are probably a lot of other viewpoints about this issue; what do you think?)

Published in: on May 17, 2011 at 5:35 am  Comments (8)  

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8 CommentsLeave a comment

  1. I always want to know, from my doctors: the worst likely course of a condition, and the most likely course of a condition. That way I know what to expect, and what to be wary of, and I can plan accordingly. It’s the only sense of empowerment available, quite often.

  2. I find myself looking at this question with a parent’s eye this morning, because my children are at an age where the automatic assumption that everything in the universe is magical and wonderful is being replaced by an understanding that there is usually a logical explanation for how these things work.

    While I still want them to appreciate mystery and to ask the sorts of “what if” questions that are the bread-and-butter of fantasy and sci-fi, I don’t want them standing out in a storm with a lightning rod because it would be cool to be able to shoot lightning bolts from their fingertips. I’d like them to know that the toy in the commercial is probably not going to glow in the dark or fly by itself.

    For myself, I like to know the truth. Knowing what can’t be mended, what can’t be changed, frees me to direct my energy towards the areas where hope and planning can make a real difference.

  3. I think you’re right. ugly truth is better than unrealistic expectations to everyone.

  4. It’s only a fairly recent idea (in the UK at least) that a patient should be fully informed about their condition. Right up until the 70’s (or there abouts), the patient would just be told to keep taking their meds and not to worry.

    I think telling patients what their odds are is a good thing, in the long run. I’ve never been in the situation where I’ve experienced it personally, though.

    The only comparable situation is the meds I’m taking for my depression. I went through two years of counselling, and then started talking about reducing my dosage with my counsellor. She said, ‘try it, but don’t worry if you need to keep taking them for the rest of your life… some people need to’. It wasn’t what I wanted to hear, but knowing that means I can come to terms with it and–just as important–so can my partner. We both want me to be able to stop taking them, but we know it might not happen. We can plan for it.

    I think that’s the most important part about letting patients know the ugly truths: It lets them and their support circle plan for the life they’re going to lead. And it helps people come to terms with their conditions, find ways to manage them and be happy regardless.

    I can’t imagine it’s nice, being the one to destroy those fragile hopes. I couldn’t do it. I really couldn’t. But the flip side is I don’t get to save any lives or see people’s faces when they’re told they’re going to be okay.

    Keep on keeping on, Dr. G. And remember that all the good news you get to deliver outweighs the bad many times over.

  5. I don’t see that you have a choice other than the awful truth. To do otherwise would (IMNHO) be malpractice. OTOH, that sense of optimism may well keep him going longer or at least keep him upbeat even as he gets worse.

  6. The very process of medical education engenders a particular brand of arrogance, often seen in various other forms, as exhibited by those in powerful positions. That said, science is not the exclusive arbiter of outcome; some results remain a mystery. Mysticism aside, there continue to be scientifically unexplained occurrences in the world.

    Your patient of course, began to feel better because of medical intervention in the disease process but his spirit is responsible for his attitude toward healing. I cannot stress enough how important it is to not throw out the spiritual baby with the scientific bathwater when truly trying to be a healer.

    I could really go on and on about this but suffice to say, one can explain the science to patients AND encourage the spirit; the perspectives needn’t be mutually exclusive.

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