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written by Anna Ferguson, RN, BSN, research nurse and leader of The Hope Project at the Johns Hopkins Kimmel Cancer Center.
"Hope is the thing with feathers that perches in the soul..."
...and also in the pleading eyes of your patient that looks to you to make something positive out of their bleak circumstances. I can tell him what the physician already has - that the medicines we're trying aren't working, that we don't know of any that will, that we will support him in any way we can, and that we wish it could be different. I will tell him all of that, and he'll still say, "But you're not giving up hope, are you?"
He is in leukemia limbo hell, where you're not dying, but you're something short of really living. Where your blood counts keep you tethered to the hospital with bleeding and infection and transfusion needs lurking around every corner. Where, medically, there's very little to do except react to a variety of flares the body throws up. Where, as providers, we'll be saddened, but not surprised, when things take a turn for the worse.
So, where is the role of hope in this case? Have we given it up, as he suggests? Should we? Should he? The answer lies in helping this patient define what, besides the chance of a cure, brings him hope. If we rely solely on fulfilling the hope of cure in this case, we won’t have much to offer him. If we, however, react by saying “I can only hope for the things that you hope for. We’re telling you that we don’t know of any medicines to make your leukemia go away. Tell me what other things you’re hoping for. Think about today and tomorrow and next week, and tell me what brings you hope. Tell me what brings your life the most meaning and joy.”
Read more on our Cancer Center blog, Cancer Matters
Tell us what hope means to you.
Tell us what you hope for.
Tell us how hope helps you manage your illness.
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