Take, for example, this scenario that played out recently with my mother. Mom was hospitalised just prior to Christmas for respiratory distress. A young, bespectacled respirologist strode into the room. He smiled at Mom and began to make notes on his clipboard. "Have you ever had trouble breathing before?" he asked. "Once when I was about twelve, I was at camp..." Mom began. My eye was drawn to the doctor's foot. His polished loafer began to tap rapidly, but his smile remained fixed.
I thought, "he is trying to have a business conversation here. But Mom thinks this is PERSONAL!" I jumped in and re-directed Mom to her more recent health history.
I found myself wishing that this doctor had been trained by Arthur Kleinman, a wise man of medicine whose work I great admire. Kleinman has offered some thoughts on re-imagining the way in which professionals care for the vulnerable and their families. He begins by suggesting a major transformation of training for health professionals and proposes a new methodology that is rooted in ‘empathetic listening, translation and interpretation’. The practical steps in building this new professional training would begin with recording a ‘mini-ethnography’ or life history of the patient and his or her family. The neurologist treating my son’s first seizure would have discovered in my life history that I had been traumatized as a teenager by witnessing my father having a post- stroke seizure while the two of us were alone at home. I was almost immobilized by fear when I realized years later that Nicholas might have epilepsy.
Next, Kleinman proposes ‘the explanatory model followed by negotiation’. Once a professional understands the lived experience of a person requiring care, he or she can converse with the patient and family to compare understandings of the illness, the treatment options and how to agree on a course of action. Everyone in the room might answer questions such as “What do you think is wrong? What caused it? What do you want me to do? What do you think will happen if you have this or that treatment?” Of course, no one is going to take time to build consensus in this manner if there is an emergency situation, but in chronic care, consensus is critical to minimizing regret, frustration or anger over the long term.
Illness IS personal to the patient. Understanding the illness experience will never be achieved by professionals who sever the personal from the conversation in the belief that it isn't relevant to treatment. Seasoned patients and their families have a role to play in training physicians how to take histories and gather information about how illness intersects with emotion in a life story. We need medical schools to provide this training.