From JAMA, The Journal of the American Medical Association, March 17, 2009
BECAUSE OF THE SPECIALTY YOU CHOSE, AND BY DINT OF your personality and the way you practice medicine, I’m sure this letter will be familiar to you; just another missive from a bereaved family member of one of your patients, gushing gratitude for the care of her beloved (good feelings have to find a place to go, in the mix of the displacement of death and vexed family dynamics and often, I suspect, get planted on physicians, whether deserved or not); just another pile of clichés and the inanities we say and think in times when our thinking is mud- died by grief.
The truth is, I felt that your partner, who first diagnosed my mother’s multiple myeloma, was the right physician to treat her. I appreciated his steely scientific mind, his insistence on explaining things in their complexity, his refusal to reduce to simple and simplistic terms, and the fact that he was willing to take the time to make sure that I under- stood what was going on with my mother’s disease, even when she didn’t want to know. I fetishize information; my mother wanted someone to make her feel better.
Then you joined the practice and took over her care. Your gentleness and compassion, your attentiveness, your willingness not only to listen to her but to hear what she was saying, made these last few years as good as they could have been.
She trusted you and, the world’s most compliant patient, did exactly as you said (including dying on the schedule she thought she’d heard from you). She was able to stay abreast of the jumble of medications she was taking; she did what she could to keep her kidneys healthy; she ate what you told her to eat. As you know, I was frustrated that she wasn’t doing more—remaining physically as well as mentally robust—and I sometimes used you to make the points I thought were important. She listened to you.
I am not a physician, although I’ve been around enough good ones to know that medicine is as much an art as it is a science. I know my mother was a hard case—her ability to deal with discomfort, let alone pain, increased some- what over the duration of her illness, but still, she didn’t suffer silently or well. I hated that because of her personality, her gender, her generation, she did not see herself as a partner in her health care treatment. You were the doctor, she was the patient. You were addressed by the honorific, she was Marcelle. She didn’t feel that she could question your judgment; I suspect this reassured her. You took care of her, and that is what she wanted. It drove me nuts that she would come home from a visit with you feeling as if she had received a report card. Either you were pleased or disappointed; if you were pleased, she acted as if she’d done something to earn a gold star. If the numbers went south, she felt that she had failed you.
We professorial writerly types spend a lot of time trying to explain the dangers of the passive voice. Not just because it makes for less mellifluous prose, but because we want our students to understand the causes and effects of agency. The atom bomb was not dropped. The slaves were not emancipated. The buffalo were not eradicated from the plains. Someone made these events occur. The passive voice lets the bad guys off the hook and fails to give the good guys the credit they deserve. It makes the world a place where stuff happens. We all know that stuff happens, but most of the time, a person or group is responsible.
Scientists have long clung to the passive voice. In a way, this makes sense. The experiment was conducted, and regardless of who conducted it, the results should be the same. Chemicals react with other chemicals. Equilibration is reached. But when it comes to the internecine workings of the body, agency is rarely so easily attributed. Oddly, I find that physicians sometimes forget this. I tried to help my mother think through the idea that her disease was not her fault, that bodies do things against our will. Cells change. Tumors grow. I tried to remind her that when you said “You’re doing really well,” what you meant is that her body was responding to the medications you had prescribed. It was you who were doing a good job.
There were a few times when I was with my mother and health care workers referred to her as honey/sweetie/ dear/darling. Disease and illness do much to strip us of our individuality; our accomplishments are spoken of in terms of lower creatinine levels, rather than our creative works. We become the Myeloma in Room Three, rather than the professor/artist/author waiting to be seen. To deprive someone of the most important part of identity— her name—seems unthinking at best and, at worst, just cruel.
What I most appreciated about the way you cared for my mother was that you really seemed to care. She was always eager to hear about your son, almost as much as she wanted to tell you about her granddaughter. She loved that when you had that last hard, long conversation with her, when she finally understood that she was going to die of this disease—sooner, rather than later—you held her hand. There’s an internal medicine doc on the faculty at a renowned university, the guy who all employees—in the medical center and the higher administration—want as their personal physician. He once told me that he could diagnose most people by talking to them; only rarely was a physical examination necessary. But whenever a patient told him about a problem area, he always touched the spot. He asked where it hurt, and then laid on his hands. He understood something about the healing power of touch. You understand that as well, and you touched my mother in so very many ways.
You saw me at my worst—when I was upset and frustrated by my mother’s declining health. I challenged a number of your decisions. When I interposed myself in her care, you always made sure to direct your remarks to my mother, not to me. If you thought that something I said had merit, you reconsidered a decision. When you were uncertain, you turned to other physicians for help. For these reasons, and for the happy accident that my mother was a sucker for sweet, quiet Jewish boys with soft eyes and gentle hands, no one could have taken bet- ter care of her.
Editor’s Note: Apostrophe: A figure of speech; the addressing of a usually absent person.