AS AN INTERNIST, I strived to give patients hope by prescribing therapies that increased their chance—their hope—of the best outcome and by encouraging them with hopeful words. My own hope was to care for patients until I was old.
Just weeks after celebrating my 36th birthday, I was diagnosed with non Hodgkin lymphoma. Throughout the ups-and-downs of my chemotherapy, I felt the kind of hope I’d wanted my patients to have. Clear scans and 10 months later, I traded in my patient gown for my more comfortable white coat and reopened my office, hoping I was cured. I wasn’t. Six months later, my need for more treatment forced me to close my practice. What could I hope for now?
Friends and family kept urging me to have hope, as if it were simply a matter of choice and all hope was good. Try as I might, I couldn’t switch on “hope” like a light. Of the hopes I had, many were not helpful, even when realistic.
MY MEDICAL TRAINING, which enhanced my ability to communicate with my health-care team and comply with therapies, didn’t help me understand hope. So, I began studying it. The first thing I learned was that hope is far more complex and controversial than I’d imagined. It is more powerful, too, because it shapes patients’ perception of their world and drives their actions.
I began to see hope like a potent medicine that can heal or harm, depending on what patients hope for. Unlike prescribed therapies, though, hope arises within. That realization launched my quest to find hope. Not just any hope, but healing hope—namely “hope that helps me get good care and live as fully as possible.”
Searching took time and effort. It took courage, too, as I learned after my cancer recurred a second time. I struggled briefly before rejecting the promises of mail-order cures and limiting my treatment choices to the few science-based options, none of which I liked. That experience opened my eyes to the vital role clinicians play in helping patients find healing hope.
For starters, patients can’t simply decide to have hope and— voilà—they have hope. One of the many reasons is that anything affecting brain chemistry might affect the brain cells, which must fire properly to experience what we call hope. That could help explain why patients might find it more difficult to find hope if, say, in pain, on certain medications, or haunted by memories of others’ poor outcomes.
Although saying “I want to hope” might not make it happen, patients can always choose to set the stage for hope to emerge. In my case, I chose to work with my health-care team to optimize my physical and emotional well-being; read writings by exceptional survivors; hang out with people who lifted my spirits; and avoid people who dragged me down. I painted the drab walls of my study bright rose and the doors grape purple. Visitors rolled their eyes. I didn’t care. Pink and purple helped me. Setting the stage for hope has been a never-ending work in progress because hope is fleeting and circumstances change constantly.
THE TOUGHER challenge for me was learning to distinguish healing and harmful hopes. In search of a hope-o-meter (scans and blood tests are useless), I had an insight while leaving for the airport to participate in a clinical trial to treat my second recurrence. My then-7-year-old daughter waved from the back door, saying, “Bye, Mom. It’s not going to work.” For her, the distress caused by possibility of disappointment outweighed the emotional lift of believing the third time might be the charm.
The image of hope as an inner tug-of-war between fear and inspiration led me to a metric for assessing each of my hopes: I could ask whether it was helping me think and act in healthy ways. “Is this hope helping me take proper action or, if there’s no more I can do, is it helping me wait?” Whenever the answer was “no,” I let go of that hope and invested in other, more healing hopes.
For example, patients undergoing evaluation naturally hope for good news. Unfortunately, that hope only exacerbated my anxiety. If the results were what I’d feared, I felt somewhat responsible, as if I hadn’t hoped right.
I found a more healing hope. Now while undergoing an evaluation, I repeatedly tell everyone, “I’m hoping for accurate news.” That hope motivates me to hold still in the scanner to help get clear pictures. It helps me wait for results because I want my doctors to take their time scrutinizing the findings. It lessens the shock of upsetting news. It prevents despair by framing upsetting results as “useful” news. And it quiets a voice that might try to blame me.
HOPE MATTERS. The illness that threatened my life also taught me how clinicians can guide patients toward healing hope. In mere seconds, you can:
State the statistical fact about hope. By saying “There is hope—a chance—of the best possible outcome,” you provide a starting point. In general, it’s easier to change what patients think than what they feel.
Share your hope, separating hope and expectation. By saying “I’m hoping for the best,” you show compassion by expressing your feelings about their situation. Adding “I’m prepared for whatever happens,” reminds—or teaches—your patients they can expect one thing and hope for another.
Discuss short-term hopes. By saying “While I’m hoping the treatments work, I’m also hoping to improve your… (pain, fatigue, etc.),” you encourage patients to focus on short-term hopes that motivate them to action—the key to complying with health-promoting behaviors.
Today, marveling at my 28-year survival, I think about the many ways healing hope has helped me overcome the challenges of recurrences and aftereffects—and helped me raise my children through my illness. Even if I hadn’t survived, I would have benefited. Healing hope would have guided me to wise decisions and motivated me to live as joyfully as possible in whatever time I had.
Let’s change the conversation about hope. If nothing else, ask patients to share their hopes unrelated to illness, such as hope to attend a special event. Their answers may enrich your understanding of your patients’ values and goals of care, which will help you advocate for them. Most important, talking about such hopes reminds everyone that clear scans, low tumor markers, and optimal pain control are not the goals—they are only a means to our shared mission of helping each patient live his or her best life today, tomorrow, and every day.
Wendy S. Harpam, MD, FACP is a doctor of internal medicine, 32-year cancer survivor, best-selling author, nationally recognized speaker and patient advocate. Read her Survivor Story and visit Wendy's website for her latest blogs, books, and activities.