Photographs capture the essence of who we are. When we ask to see pictures, patients and families are reassured that we value the wholeness of their lives.
Lifelong Learning in Clinical Excellence | January 17, 2019 | 5 min read
By Elizabeth Gundersen, MD, Florida Atlantic University
I recently watched a video of a lecture on humanism in medicine given by Rita Charon, MD, the founder of the field of narrative medicine. Her words were poetic, and I was struck by how often she punctuated her thoughts with the question, “Do you see?” I was spellbound. That phrase, “Do you see?” made me think about how we see our patients.
As an inpatient palliative care doctor, I meet my patients when they are seriously ill or close to death. I’m often called in to cases where there is disagreement between the medical team and the family of a seriously ill patient. As medical professionals, we look at patients and observe their sunken eyes and swollen limbs, their wasted muscles and torn skin. It can be difficult to imagine that these patients were ever anything but sick.
But families don’t look at their loved ones and see what we see. A husband sees the woman who won his heart with her impish smile. A daughter sees her father gamely trying not to cry as he walked her down the aisle. That disconnect between what we see and what patients and families see can cause profound distress. The medical team cannot understand why families are choosing to pursue life-prolonging treatments, and the family cannot understand why the doctors are “giving up.”
Do you see?
I vividly remember the time I asked a patient’s daughter, “So your father liked to fish?” and then instantly corrected myself: “I mean, likes to fish?” My patient was frail, unresponsive, and on a ventilator, but he was still alive. I don’t think his daughter noticed that I prematurely referred to her father in the past tense, but I was seriously shaken by how easy it was for me to fast forward to his death and ignore the life he had lived.
It was a wake-up call, and I vowed to search beyond my patients’ symptoms and see the people behind them. I’ve learned to be curious, to listen, and to ask lots of questions. And there is one question in particular that now helps me see my patients more clearly than any other: Would you show me a picture?
Photographs capture the essence of who we are. And these days, many people carry a smartphone, complete with a repository of pictures.
One patient I saw was a young woman in her late forties. An accident six months earlier had left her in a persistent vegetative state. She’d been living in a nursing home and was frequently shuttled back and forth between there and the hospital as she suffered complications. The medical team was frustrated with her husband, even going so far as to suggest that by prolonging her life, he was endangering the community because she harbored drug-resistant bacteria.
I sat with her husband. We both looked at her body, the rise and fall of her chest, the soft and rhythmic sounds of the ventilator. “Do you have any pictures,” I asked, “from before?”
His eyes lit up as he pulled out his phone. “Here,” he said. “This is her graduating from nursing school. This is her with the kids.” They had been married well before cell phones were common, but he had taken pictures of their wedding photos. I realized he was showing me what he thought were the most defining moments of her life, the things that embodied who she was. I looked from her bed bound body to the vibrant, red-lipsticked woman on his phone, and saw what he saw. Not an empty shell, but his life partner, the mother of his children, a nurse who had dedicated her life to caring for others.
“I can’t sleep at night, knowing she’s like this,” he confessed. “But my kids are begging me to keep her alive.” “That must be so hard,” I said. “If you lose your wife, you don’t want to lose your kids as well.” He looked relieved. “Thank you,” he said. “All the other doctors keep telling me I should just decide on my own. No one has ever talked to me like this.” When I went to bed that night, I hoped the husband was sleeping peacefully.
Do you see?
I started asking others for photos, and the more I did it, the more I realized how therapeutic it was not only for me, but also for patients and families. Each picture provides eloquent testimony that the person in the bed is loved, cherished, and important. They feel reassured that the medical team recognizes their uniqueness and is not simply rubber-stamping them as hopeless cases.
I once talked to a woman about her husband, who had cancer. He had been fairly active until he had a precipitous decline just weeks before. “Do you have any pictures,” I asked, “from when he was feeling better?” She shared pictures and video of what brought him joy: his family surrounding him as he blew out the candles on his birthday cake, him chasing his grandson around a tree in the backyard. At one point, her voice trailed off, and I could see her flicking through photos, lost in thought. It was as though she was realizing how sick her husband was, and grieving. I sat with her in silence.
The family elected to take the patient home to hospice care, but the house had sustained hurricane damage and was still under repair. They arranged to have him stay in the hospital for a few more days, but he suddenly became unstable and was not able to be transported.
Hearing the news, I rushed into his room, where several family members encircled the stark white bed like a wreath. One family member could not be there but had written a letter to be read to the patient. “We’re too emotional to read it,” they said. “Would you?” I did, and it was the perfect summary of his life: funny and beautiful and kind. I got to one sentence: “I remember you running around Ben’s tree…” and paused, realizing that was their nickname for the tree in the video his wife had shown me. Overwhelmed with emotion, I took a deep breath and continued. A minute after I finished reading, the patient died.
I blinked back tears, humbled by the privilege of having met this patient and his family, and grateful to have shared in their memories.
I could see.
You can follow Elizabeth Gunderson, MD, on Twitter @Top_Gundersen.