A man in his fifties is wheeled into the emergency department on a gurney hoping he’ll still be around to cheer from the sidelines at his daughter’s next soccer game. A little girl on the pediatric floor upstairs simply hopes her tummy stops hurting. A woman in the clinic explains her puzzling symptoms and hopes that this is the specialist who will finally be able to ascertain why she hasn’t been feeling well.
Our patients’ hopes are as varied as their medical conditions, and as their health care providers, we often support them in these hopes. Holding hope for our patients is part of our duty. However, hope is inherently complex, and sometimes it is in conflict with another duty – our responsibility to tell patients difficult truths that will extinguish their hope. It is these circumstances that call for a renewed understanding of hope.
The word “hope” generally has positive connotations, but we must also recognize that it can sometimes be an unexpectedly powerful source of unintentional harm. There are two main kinds of hope — what Dr. Harpham calls “healing hope” and false hope — and part of our role is to help patients distinguish between the two. False hope is, of course, the harmful kind because it sets patients up for distressing disappointment; it encourages them to maintain unrealistic expectations that inevitably go unmet. For patients navigating end-of-life care, a sense of false hope may lead them to proceed with ineffective treatments that keep them from enjoying what time they have left. Healing hope, on the other hand, can help patients live life to the fullest, even in the midst of the challenges they face.
Unfortunately, there are no clear criteria or committee-approved guidelines that help us navigate the nuances of hope. How can we deter patients away from false hope and help guide them toward healing hope instead? The first step is to help our patients expand their definition of hope. In the book Hope in the Dark, activist and author Rebecca Solnit writes, “It’s important to say what hope is not: it is not the belief that everything was, is, or will be fine.” Rather, she goes on to assert that true hope requires two things: clarity and imagination. Clarity is essential because one cannot avoid reckoning with reality. Imagination follows closely behind because it empowers one to turn towards the future with a new perspective that embraces uncertainty.
Julie Church, a registered dietitian who works with patients struggling with eating disorders, also comments on the uncertainty implicit in hope. She says that the professional therapeutic team she is a part of “hold[s] a lot of mystery and ambiguity about what one’s body will do when one is pursuing health […] for some bodies, some weight loss could occur as they pursue health and for others it may be maintenance and [for] others it may be weight gain.” This orientation around hope typically requires that patients let go of certain specific and potentially false hopes they have been clinging to. The process of adopting a new definition of healing hope is not always easy; it often involves a significant amount of grief, but there is also relief on the other side. Rebecca Solnit notes, “Inside the word emergency is emerge; from an emergency new things come forth.”
Healing hope equips patients with the tools to see that their hopes are actually the means to living life to the fullest rather than the end in and of themselves. For example, a young man with epilepsy conveys his hope to the neurologist that his medications can be adjusted so he doesn’t experience the nearly incapacitating side effect of irritability. His hope to not feel so irritable is not the end in and of itself; rather, it is the means by which he will be able to connect better with his classmates and build meaningful relationships.
Having conversations with patients about hope is essential not only in oncology or palliative care, but in every field of medicine. After all, all of our patients are hoping for something.
Shannon Casey is a physician assistant.
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