Navigating Hope

The concept of hope can be elusive for those facing a cancer diagnosis. In the Center for Communication in Medicine’s (CCM) video Voices from the Lived World of Illness we hear Adrienne Barnes say, “Hope is different from minute to minute, hour to hour, day to day…” She is telling us what one “hopes for” can change at any moment.

In response to Adrienne, Patricia Barr adds, “What was hope for me yesterday? I took a walk. It took me 5 times as long to go half the distance and I had to stop 3 times but I took a walk.”

Then Pete Johnson declares, “If it’s a goal, it is hope. That’s what I am going to shoot for and hope I can make it.”

Dr. Lidia Schapira, oncologist and Director of the Cancer Survivorship Program at Stanford Medical Center, recognizes the role of hope in caring for her patients. She notes, “I think of hope as an emotional vital sign. I can’t do my work as a doctor without knowing my patient’s temperature, blood pressure and pulse rate. If I am to do my job well, it is just as important to me to take a ‘reading’ of their level of hopefulness and hopelessness. There is so much we can do as medical professionals…even if our treatments fail to cure the disease, we can help them cope and hope to fulfill some realizable or realistic goals.”

In my role of medical humanist, I’ve always advocated for doctors and patients to communicate openly and honestly about what are realistic hopes. Yet, that doesn’t always happen. To make this point, Adrienne emphatically states, “But, I don’t want anybody telling me—like a doctor—I don’t want to give you false hope. If I don’t want to have false hope myself that’s fine, but don’t anyone tell me that. This is my business to struggle with.”

In explaining why some doctors may offer false hope, Dr, Schapira confides, “Doctors are individuals struggling with emotion in the face of overwhelming sadness and often have feelings of personal failure at being unable to reverse the misfortune befalling their patients.”

What I’ve learned as a medical humanist is that patients want to be seen, heard and told the truth. I believe both doctors and patients have a role and responsibility in communicating with each other about prognosis and what is realistic to hope for. Sadly, avoidance of these conversations can result in regrets for both patients and loved ones.

To this point, Noel “Fritz” Fritzinger, a patient with advanced prostate cancer featured in the CCM video Difficult Conversations, talks about the importance of he and his wife having ongoing conversations with his oncologist about prognosis in order to fulfill realistic hopes. He sums up his perspective by telling us, “I want to make my time as pleasurable, meaningful and rewarding as I can. That’s what I hope for.”

When I think about hope I find myself reflecting on Vaclav Havel’s words, “Hope is not the conviction that something will turn out well but the certainty that something makes sense, regardless of how it turns out.”