Monday, February 16, 2015
by Lyle Fettig, MD
You meet a 29 year old man with a history of Diffuse Large B-Cell Lymphoma.* Palliative care was consulted after he presented to the hospital with lower extremity weakness and was found to have extensive new epidural spread of his disease as well as progression of disease in his chest and abdomen. He was just diagnosed five months ago. He started chemotherapy with hopes that he'd respond well enough for consideration of a stem cell transplant. With documented progression of disease, it has become clear that would not happen.
He'll die soon. You look at him, his wife, and two year old daughter and wonder why. The idiomatic thought springs forth naturally, "What did he do to deserve this?" even if you're consciously able to say "this isn't his fault, he doesn't deserve any of this."
Maybe smoking is linked to lymphoma? Maybe not. And anyway, he never smoked. Even if he did, how many 30 year olds who smoke succumb to a similar fate? A tiny percentage. He occasionally drank alcohol, but never did any other drugs.
Maybe it's some other environmental exposure? Maybe he was exposed to something at work? He has worked at a facility that makes medical supplies. Hmm. No obviously known exposure risk.
There has to be something.
What drives the desire for an explanation? The answer to this question is complicated, but here's one factor that may drive the desire for many:
The just-world hypothesis.
People who strongly hold this hypothesis assume the world must be fair and may be more inclined to believe that if something bad happens to you, you must have deserved it somehow. This hypothesis sees suffering and concludes that people who suffer must be the kind of people we disdain. If the world isn't fair, what bad things might happen to me? If unfairness like this exists, it's scary to confront. One way to avoid this fear is to assume fault of the person who is suffering.
You know the patient cannot be blamed for his lymphoma. Maybe it can be explained by genetics, a quirk of cancer biology. But what about the 70 year old woman who has lung cancer after a 120 pack-year history of smoking cigarettes? There's no doubt about the relationship between smoking and lung cancer. The dangers of smoking continue to be clarified and every public health campaign that reduces smoking rates is a good thing.
Is the non-smoking blamer reassuring himself about his own fate? "That couldn't happen to me- I have never smoked." Tobacco contributed, no doubt. Can the blamer, armed with the just-world hypothesis, more easily ignore the fact that up to 24,000 people die in the United States from lung cancer every year without having smoked?
In an unfair world, try not to blame the dying person or try to dispute the person's experience of unfairness. The lifelong smoker may point to someone who lived twenty years longer while smoking. It's true that smoking is bad, people should stop for their health, and still some people skate through in spite of it. So it won't seem fair to many who don't.
Watch out for this bias. If you have feelings of blame (even if unspoken), examine what the source of those feelings might be for you. Be gentle with yourself if you discover it might be in response to fear of an unfairness which is universal in potentiality. Examine your own fears. Don't let them obstruct a compassionate response to the experience of loss and grief which is a source of the patient's experience of unfairness.
Aim to non-judgmentally provide safe passage and support to all until the end. The world will be more fair as a result.
*Any resemblance to real life patients is purely coincidental.
Photo: Justice via Shutterstock
Lyle Fettig is a palliative care doctor in Indianapolis where he lives with his wife and two boys, both who love Funky Bones at the IMA 100 Acre Park.