18 Mar Hope and Recovery
…and the doctor walked out confident the plan of care was understood. As the social worker was making his rounds, he found the patient in tears. The surgery was tomorrow. Not a minimally invasive one, but one in which the very foundation of Mary’s identity would be cut upon. “I just don’t understand. The one doctor said I was getting better and now I’m having brain surgery tomorrow?” Lost between the hope of experimental chemo at a world-renowned center, emergent radiation on her skull, and the ICU staff feverishly replacing the 2 liters of urine her kidneys were dumping every few hours because of her brain being irritated, Mary just couldn’t digest what was wrong with her and how the healers were going to help. Everyone was in such a rush. Entering swiftly, often while she was asleep or on sedatives, performing a cursory exam—heart and lung sounds, pupils—and then vanishing through the curtain while Mary started to become alert. While the nurses tried to explain the plan of care: reading radiology reports and physician notes, there were many gaps in understanding the illness experience. What if Mary could hold the entirety of her illness journey in her hands, share it with her family and support system? The five lb binder the doctors gave them had long words and confusing descriptions. What if Mary could read, watch, and listen at her level of understanding—as if someone knew she barely finished 8th grade before starting work at the garment factory. What if Mary could connect with a network of other patients who were travelling and had already journeyed this road? Exchange perspectives, inspirational stories, and practical solutions to navigating the healthcare system? In a world where technology is everywhere—integrated to our cars, refrigerators, and TVs, why has it not affectively been integrated into the patient’s narrative journey? Allowing them to understand their illness, share their experiences, and gain hope to overcome suffering and recover function. I challenge us to become better at putting our patient’s first. Dare to go beyond satisfaction scores and truly change healthcare. Before the Bio-Medical model of illness and treatment, it was the patient’s story, their narrative, which informed and guided the healers. We spent time educating and listening. Responding to questions even when the answers were difficult. BeeWell reminds me why I went into medicine in the first place—to listen, nurture, and guide life’s most vulnerable from a place of fear and sadness to one of hope and recovery.