"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.”
Then, he thinks a little, cries a little, and tells you what he hopes for – for tomorrow, for next week, for next month.
...that he gets to his grandson's school play
...that he’s given a respite from nausea this weekend
...that he doesn’t need to stay for transfusions on Tuesday
...that the snow doesn't keep his sister from coming to visit
...that his medical team can find a way to juggle his meds and transfusion needs so that he can spend a weekend away at the beach with his wife
...that his blood counts look a little better today
...that his football team wins this weekend
As a provider, this now serves as an anchor for future conversations and decisions. This will be the discussion you refer back to and remind him of when the next crossroads or decision point is reached. You’ll be able to say, “I want to check in with you again about your hopes. Are the treatment decisions we’re making allowing you to accomplish the things that mean the most to you?”
This man wants to live a long time. Reframing his hopes to those that are attainable and realistic won’t be a magical moment where he leaves your office, skipping, with bluebirds chirping on his shoulder. He’ll be sad, contemplative, and thoughtful. But, he’ll call you a couple of days later with joy and a sense of accomplishment in his voice saying, “I did it. I made it to William’s school play. I wasn’t sure I was going to, but I did it.”
“Now,” he’ll say, “let’s get started on making that beach weekend happen.”
“We’re with you,” you’ll say, and you could swear you heard the faintest bluebird chirp in the background.
On November 30th, the Johns Hopkins Kimmel Cancer Center community convened a large audience for Grand Rounds to hear the first presentation of The Hope Project. This project, led by a multi-diciplinary team from our Cancer Center, seeks to elevate the concept of hope beyond its association with cure. To do this, the project aims to help cancer care providers talk with patients about hope in a realistic and nurturing way that encourages patients to define and refine over time what it is that brings them hope. The presentation was an important beginning to our conversations about how hope can help our patients manage their illnesses, independent of their prognosis. During the presentation, our own patients spoke eloquently about how the small, everyday hopes are the things that light their fire, keep them going, and inspire them. We heard, unequivocally, that hope matters to our patients and talked about how we, the providers, can play a positive and influential role in their experience of hope. We learned that asking the question: “What are you hoping for?” opens doors, starts conversations, keeps conversations going, personalizes care, and lets patients know that hope is about them, not their medical outcome.
Watch The Hope Project presented on Nov. 30 at Grand Rounds.