Hope is an essential feature of human experience, but for patients living with a life-altering diagnosis, it can be sorely lacking. In my work as founding director of the Palliative Care Program at University of California, San Francisco, I’ve learned that in order to restore hope we have to understand how rapidly changing moods affect patients, which is why Chapter 7 of my new book, Life After the Diagnosis: Expert Advice for Living Well with Serious Illness for Patients and Caregivers (Da Capo Lifelong; February 14, 2017) is dedicated to the “Mood Roller Coaster.”
Understanding the difference between difficult moods and outright depression is part of ameliorating suffering in palliative care. So is finding milestones and events to help the patient increase their focus and determination—and possibly even extend their life. Marion’s story is an excellent example.
Marion was a 64 year-old woman with interstitial lung disease, which is a relentless scarring of the lungs. She needed high levels of oxygen just to stay alive. Marion was so sick that she couldn’t leave the ICU. When I asked her what she hoped for, she told me that she hoped to see her daughter get married. She explained that her daughter was engaged and the wedding was planned.
“Congratulations,” I said. “That’s wonderful. When will the wedding be?”
“In 10 months, in Napa,” Marion replied.
I couldn’t imagine Marion being alive in 10 months let alone well enough to leave the hospital or the ICU. So I arranged to speak with Marion and her daughter about the situation and their hopes.
Fast forward a week later to an ICU filled by a bride in a flowing white gown, a tuxedoed groom, identically dressed attendants, and a robed minister. Marion sat propped up in her bed, inhaling oxygen in her nose, and with a corsage pinned to her hospital gown. Our hospital staff, all dressed in different colored uniforms, gathered in front of Marion’s bed, where the ceremony was held. There wasn’t a dry eye in the house.
What a beautiful wedding! Marion’s wish came true. Because we asked about her hopes, we were able to help her achieve them. Was it what she imagined? Not at all. But it was joyous, memorable, and meaningful and the beautiful eclipsed the grotesque. It might not have happened had we not asked about hope.”
Excerpted from Life after the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers by Steven Z. Pantilat, MD. Copyright © 2017. Available from Da Capo Lifelong, an imprint of Perseus Books, LLC, a subsidiary of Hachette Book Group, Inc.