Thorough documentation can be weak representation of patients

I am recalling a workshop on unconscious bias from last year, the moderator hands outpatient prototype profiles to each table of participants. Ours is a glossy paper with a color photo of our patient, Jane, and a clear outline of her type of employment, hobbies, interests, family members, religious beliefs, and how she prefers to receive information. This strikes me as very clear and succinct, calling attention to many of the personal qualities which define this imaginary person and may impact her care needs.

This memory is called up during a routine follow up visit with Mrs. D., who I have only known for a few months. While I type a brief addendum to my progress note, I am distracted by Mrs. D. digging aggressively in her handbag. She pulls out a 4×6 photo of herself, her husband and their two grown children. She places it on the work table next to my hand.

“I thought you might like to see this,” she says, “This is who I am.”

I felt a wave of guilt. Have I made an inadequate effort to know her as a person? Does she feel like a cog in the wheel of a busy day? I push myself away from the computer and meet her gaze.

As I then admire the photo of her family, I consider who I might like to share a photo of my own family with. It would be someone to whom I seek a deeper connection, not someone who seems uninterested in me. My initial guilt begins to give way to a feeling of privilege and gratitude. Mrs. D. wants me to know that family is at the top of her priority list. These are the people who she lives for, and I know that my response will show her who I am.

“What a beautiful photo. Tell me about your husband and children,” I say.

She spends a few minutes describing them, her love and pride abundantly evident. She tells me that her husband and both sons share her love of classical music, and, when they are all together, family meals are accompanied by a great symphony or chamber work. While both sons have pursued careers in other cities, their strong religious faith keeps them connected.

“Would you like to keep the photo?” I feel another twinge of unease. Would it be strange to have a patient’s family photo in my office? I hope she does not notice my fleeting hesitation.

“Thank you,” I reply, accepting the photo. “That is very kind of you. I hope I have a chance to meet them sometime.”

Her visit lingers in my thoughts after I see my last patient of the day. After finishing my final few result reviews and message responses, I open Mrs. D’s chart again. Across the top of her summary page I see her age, date of birth, allergies, insurance, and contact information. Scrolling down, I see her active problem list, medications, health maintenance record, and re-read my last progress note. Then I consider, if I had not just seen her recently, would these pages adequately represent her?

There is nothing archiving her passion for music and love of family, no mention of her anxiety about screening tests or her deep religious faith. The summary page contains a great deal of important information, but her most distinctive human attributes are either missing from, or buried deep within the text of her EHR. My memory, fleeting and imperfect, is the only record I have of Mrs. D. the person, if not for her generous gift.

My chart is an excellent document, but a poor representation, and this should not be accepted as the standard. I should be able to access pictorial and verbal information on what makes my patient a unique human being just as easily as I can locate her allergies. I am inspired to imagine the possibilities.

Glancing across my desk, I see her family photo — Mrs. D., her husband and children stand next to each other in a warm embrace, their smiles unforced, looking like there is no place they would rather be. “This is who I am,” she had said. For now, the chart reminds me of her data, but the photo helps me recall the person who places her trust in me.