Typically lost in the policy debate is the fact that health care, at its core, involves intimate, personal relationships between patients and their doctors. Those roles are usually narrowly defined, but sometimes it becomes necessary to cross traditional lines in order to forge a therapeutic, and ultimately compassionate, connection.
Anne Brewster, a Boston internist, has multiple sclerosis, an autoimmune disease of the central nervous system. One day, she decided to risk disclosing something about herself to a patient:
“I have the same disease,” I told my patient over the telephone. There was a pause, and then a sigh. “That makes me feel so much better,” she said.
I was speaking to Ms. R, a soft spoken 30-year-old female with gentle brown eyes whom I had seen the previous day in the urgent care clinic where I work. She had come in complaining of difficulty remembering things. “I am in the middle of speaking and I suddenly forget what I am talking about, or I can’t find the words to say what I want to say,” she had told me.
“My husband and my friends say that I am not acting like myself.” We spoke further. A few months back, she had noticed a feeling of unsteadiness when walking, “like the world was off kilter,” but this had since improved. And perhaps she had been more clumsy than usual lately, dropping things. “I know something is wrong and I am frightened,” she had said.
She had a left-sided Babinski sign on exam–her big toe flexed upwards toward the top of her foot when I stroked the bottom surface with my thumb, a normal reflex in infants but pathological in adults, and evidence of damage to the central nervous system. I ordered MRIs of her brain and spine. The studies were done the following day and showed numerous demyelinating plaques consistent with Multiple Sclerosis.
I called her at home to give her this news. While I informed her that the diagnosis was not yet certain, that further evaluation and testing by a specialist would be needed before we could say anything definitive, she heard only “Multiple Sclerosis”. “What does this mean?” she asked, but she didn’t wait for my answer. She began to cry. “I am so young. There was so much I wanted to do. I wanted to have a family.”
“I have the same disease,” I told her. I had decided to reach across the space between us and to share a bit of myself. I went on to say that I have four kids, that I still ski, run, play lacrosse and work as a doctor, that I am healthy and energetic. “There is tremendous variability in how people do,” I offered, “and some people do very well. It is the unknown that is scary.”
In revealing personal information, physician to patient, I had crossed a line. I did so intentionally, in an effort to bring compassion to our exchange, but still today, I cannot shake the slightly uneasy feeling that I have somehow breached medical etiquette.
When we enter medical school and don our white coats for the first time, the division between doctor and patient begins–“us” and “them.” We start our education by dissecting a human corpse, and in so doing, learn early on to separate the body from the person. We master the parts-the Ischial Tuberosity, the Latissimus Dorsi, the Sternocleidomastoid, the Flexor Digitorum Longus. We think about lymphatic drainage, muscle insertions, arterial supply, and nerve innervation. We divide the body into sections: distal and proximal, dorsal and ventral, lateral and medial.
We go on to study disease processes-so many that our heads spin. Eventually, we begin to take care of patients and are encouraged to remember the person behind the disease. We are instructed to make eye contact, to sit on the edge of the bed when we speak to a hospitalized patient, and to use touch when appropriate, by holding a hand or squeezing a shoulder. Empathy is cultivated, but at the same time, explicitly and implicitly, we are taught to keep an emotional distance. Sharing personal information is taboo.
Part of this is for survival. None of us could bear to feel all of the pain, the fear, the loss that we encounter daily in medical practice. If we allowed ourselves to realize that we are vulnerable to all of the diseases we treat, all the time, we could not function. And part of this is about being a good doctor. Emotions can cloud judgment, and the preservation of professional boundaries is essential to quality care.
But true objectivity is a myth. We are human beings, and our personal experiences are at play in all of our interactions. The white coat does not protect us from our humanity. In meeting Ms. R, I thought of my own illness. I remembered sitting on the doctor’s examining table, cold and exposed in my paper gown, as I spoke for the first time about the numbness and tingling in my legs. I remembered lying in the MRI machine, trying to ignore the loud banging of the magnet, the closeness of the walls around me, and my own terror. I remembered the moment of diagnosis. I was alone, and was told rather abruptly to hurry up and finish having my children so that I could begin treatment. When I left the office I sat in my car and cried. I was overwhelmed by fear, anger, and shame. I envisioned the worst, thinking of everything I would have to give up, certain of the wheelchair in my future. That was eight years ago.
As physicians, our duty is to bring self-awareness to our patient-doctor encounters. We cannot let feelings impair our judgment. We must be cognizant of what we bring to the relationships, and avoid over-identification with patients. Our values are not necessarily their values. Patient best interest must always come first. At the same time, we must honor our humanness, trust our emotions and have the courage to expose our vulnerabilities when it feels right. In some instances, this may be the most therapeutic and compassionate thing we can do.
“That makes me feel so much better,” said Ms. R, and I believed her.