You probably say things to patients that help them more than you know. Maybe more than you imagined possible. Over the years of my survivorship, I've been surprised time and again by how a seemingly ordinary statement by my physician or nurse changed my world for the better. Here are a few phrases that came from a place of caring and helped me beyond words.
When Disease is "Incurable"
I was a 36-year-old solo internist when surgery revealed lymphoma. By the time of my post-op clinic visit, worries about my children, patients, and practice replaced fading shock. My oncologist began examining me before sending me to the infusion room for my first treatment. I blurted out what I thought was a rhetorical question: My cancer...It's curable, right?
Back in 1990, textbooks uniformly described indolent lymphomas as incurable, with shorter remissions leading to death. He could have responded, No. Instead, without skipping a beat he told me my cancer was very treatable and that the regimen I was about to begin was highly effective, adding, New treatments are coming down the pike that we'll use if needed.
Either answer would not have changed the facts of my disease-or my knowledge of them. How I perceived my illness, though, was shaped by his choice of words. Undergoing chemotherapy and facing an uncertain future would have been far more difficult had I thought of my cancer as ultimately unstoppable. That focus on my cancer's treatability and the promise of research provided cornerstones for a healthy philosophy of survivorship: Live today and hope for a better tomorrow.
My oncologist's answer satisfied me. What if I'd pushed him: I understand it's treatable, but is it curable? I don't know what he would have said. What I can tell you is how I respond today to patients who ask me for advice on coping with their "incurable" cancer.
I begin with a global perspective: There are no incurable diseases. Only diseases for which researchers are working toward cures. Then I encourage patients to tack on the implied three-word ending whenever they hear someone repeat a decree that their cancer is incurable: with current therapies.
To further lighten the burden of "incurable" that can ruin otherwise good times, I affirm the power of non-curative effective therapies. Your current treatments will help you live as well as possible today. Even if they don't cure you, they may keep you alive until better therapies come along.
I share that most of my cancer therapies were not options when I was first diagnosed. While hopscotching for years from one new treatment to the next, I also raised my children and went on book tours. For me, hope became reality. My ninth course of treatment prompted a durable remission lasting 16 years and counting.
Will my story foster patients' false hope? No. Even if no effective treatments had materialized in time for me, my oncologist's answer would have been healing. I know this because of my quality of life during the years of worsening prognoses after my first two recurrences: My hope of research calmed my fear of the future so I could embrace what joys were available each day.
No matter how excellent your patients' prognoses, uncertainty persists. You foster your patients' efforts to find both acceptance and hope by giving voice to guarantees. I want the best for you. I believe you are taking the best treatment for you for today. This path offers hope of a better tomorrow.
When Treatment Options are Few
My indolent lymphoma had entered yet another remission. I hoped it might last but expected it wouldn't, given my history of near-annual recurrences. I sought hopeful acceptance: a balance of accepting the likely outcome while hoping for the best.
From time to time, I touched base by phone with the researcher who had treated me earlier in two clinical trials. As we began exchanging good-byes at the end of one of our updates, he off-handedly injected, I'm always looking for something for you.
Those seven words changed me. Envisioning a sentinel watching the front lines of research, I felt inner peace: If I died of lymphoma, it would not be because anyone could have done anything more, but because of a disease that needed new, better therapies. That belief helped me accept the prognosis and manage the uncertainty. It also helped me find hope. You see, the researcher's "looking" meant he was hoping, an emotion born of compassion. The fact that he cared and hoped for better treatments was reason enough for me to hope, too.
As clinicians, you are always looking. You're looking while learning from conferences, journals, podcasts, curbside conversations, and patient experiences. You're looking during patient visits when using new knowledge to rethink your assessments and recommendations. In the care of patients, you show compassion and open the door for hope by mentioning that you're always looking for something better.
When a Crisis is Over
My first clinic visit of this year began with-Click! Click!-my nurse deleting medications I no longer needed. Test results showed continued improvement. My physical exam was normal. With smiles all around, I expected my oncologist to discuss my next follow-up. Instead, he looked at me with soft eyes and said without fanfare, Last year was a hard year.
A shiver of validation, relief, and pride wriggled through me. Someone with a front row seat to the toughest cases was telling me that last year didn't just feel hard to me...it was hard. He'd witnessed the challenges and disappointments, and my ungraceful efforts to forge on. I had no reason for any sheepishness-even if only to myself-about my pessimistic and teary outlook during the months before treatment kicked in. It was a hard year, and I got through.
In the care of patients on an upswing after hard times, consider acknowledging the challenges they overcame to get to today. Doing so may help them move on with hope by helping them manage the heightened uncertainty with greater confidence. Now they can tell themselves, I can do hard things.
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
Oncology Times offers helpful handouts on a wide-range of oncology topics, including: A Healthy Approach to Online Test Results, When Your Child Is Diagnosed With Cancer, and Coping With Treatment Delays. You can download all patient and clinician handouts at https://bit.ly/2FE9g6K.