Without a "hope" pill, what can busy clinicians do about patients who express hopelessness in situations that are clearly not hopeless? Along with referring patients to professionals in psychosocial oncology, here are some ideas for fostering patients' hope that begin with sharing an aphorism: If there is hope, there is reason for hope.
Unlocking the power of this aphorism begins with distinguishing between two different meanings of "hope." In the opening phrase, "hope" refers to statistical possibility. To tell patients There is hope this treatment will relieve your pain is to report a dispassionate fact based on the medical literature and your knowledge of those patients. That contrasts with the meaning of "hope" in the phrase after the comma, There is reason for hope. Here, "hope" is short for "having hope" or "hoping," and you're referring to a specific emotion: patients' positive feeling linked to their belief that the desired outcome can happen for them.
With that distinction in mind, let's imagine patients who express hopelessness that doesn't jibe with the statistics for similar patients. You can be talking about hope of achieving remission or cure, relieving pain, regaining full use of a limb, attending a forthcoming wedding, or any other positive future outcome. One explanation for the disconnect could be that patients unwittingly blur the two meanings of hope. Feeling no hope, they erroneously conclude there is no hope. Now perceiving the unwanted outcome as a forgone conclusion, they see no reason to try to help their situation, let alone cultivate hope. Such hopelessness leads to paralysis.
Family members and friends may try to persuade such patients with encouraging facts and uplifting anecdotes while insisting There is hope! Patients hearing the emotion behind their loved ones' words may dismiss legitimate arguments.
If you say the exact same things, patients will likely listen. That open-mindedness makes sense. Since their first consultation, they've looked to you for your expert determination not only of the prognosis (i.e., the likely outcome), but also of the best possible outcome (i.e., the most they can hope for). They take your pronouncements as objective estimations based on what modern science and technology can reveal and forecast, and on what you've seen with other patients-and not as reflections of your hopes and wishes.
Consequently, if you assert There is hope, at the very least patients know that you have concluded as a scientist that the desired outcome is possible for them. They know that you believe they can succeed in achieving the outcome they feel hopeless about right now. At best, the authority behind your pronouncement leads patients to accept that the desired outcome is possible, and, thereafter, to believe it. Patients' new perspective that There is hope justifies a logic they can buy into: It makes sense to feel hope.
We're only halfway there because we're still talking about patients' cognitive state and not any emotional experience of hope. In uncertain times, it is the emotion of hope that brings patients comfort and inspiration motivating them to action. How do patients make the transition from the cognitive to the emotional?
Consider the physiology of subjective human experiences. When certain patterns of brain cells fire, patients experience certain sensations or emotions. With hopelessness, the neurochemical architecture needed to experience hope is not working, analogous to a pituitary tumor causing peripheral blindness.
That's an oversimplification of a complex, poorly understood phenomenon (hope) that has no blood tests or scans to measure it. An array of factors-known and unknown, modifiable and immutable-play into patients' ability to experience hope. For example, all other factors being the same, it may be more difficult for some patients to experience hope if experiencing pain, grieving a major loss, or grappling with memories of a loved one's poor outcome from the same disease.
All that said, here's one way to envision the aphorism helping patients make the transition from "hope as possibility" to "feelings of hope." First, patients who feel hopeless hear you say There is hope and come to believe that the desired outcome is possible for them. A new, more positive perception of their situation changes the neurochemical milieu of the brain. Any subconscious blurring of the two meanings of "hope" now, like greasing the wheel, makes it easier for the pattern of cells to fire that gives rise to feeling hope.
Each patient takes a unique path from cognitive acceptance of possibility to feeling hope. For some patients, the newly acquired perception of possibility flings open the floodgates to powerful feelings of hope. For others, the same shift in perception barely budges those gates. Then there are patients who get stuck. They listened to you and now believe a good outcome is possible. They hear your hope and genuinely want to feel hope, too, but they just don't. Maybe they are clinically depressed. Maybe they can't overcome a contagion of people treating them like goners. What then?
In cases where hopelessness persists, consider diverting the conversation away from medical outcomes. Take a minute to help them identify something they can easily feel hopeful about. Perhaps hope of making wise decisions or enjoying a fun upcoming event. In that state of hoping, the associated neurochemical changes may increase a general sense of hopefulness. The primed brain may allow proper firing of the cells needed to feel the first wisps of hope of recovery.
If patients express hopelessness in not-hopeless situations:
* Prepare them for the likely outcome. For patients like you, what usually happens is....
* Discuss best-possible outcomes. For patients like you, the best outcomes are....
* Talk about "hope" as possibility. Good outcomes are possible for you. There is hope.
* Share your hope. There is hope for you, so I feel hopeful.
Patients need hope to manage uncertainty in life-enhancing ways. In clinical situations that are clearly not hopeless, red flags wave when patients express hopelessness. As clinicians, you occupy a powerful platform for helping patients see and believe what is possible for them. By stating that There is hope, you give patients a good reason for hope. For some, your words provide the key ingredients needed for feelings of hope to emerge-hope that helps them live.
WENDY S. HARPHAM, MD, FACP, is an internist, cancer survivor, and author. Her books include Healing Hope-Through and Beyond Cancer, as well as Diagnosis Cancer, After Cancer, When a Parent Has Cancer, and Only 10 Seconds to Care: Help and Hope for Busy Clinicians. She lectures on "Healthy Survivorship" and "Healing Hope." As she notes on her website (http://wendyharpham.com) and her blog (http://wendyharpham.com/blog/), her mission is to help others through the synergy of science and caring.
Patient Handouts
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