The ASCO Post is pleased to reproduce installments of the “Art of Oncology” as published previously in the Journal of Clinical Oncology (JCO). For information on how you can submit your own essay for consideration in JCO’s Art of Oncology, visit http://jco.ascopubs.org/site/ifc/determine-my-article-type.xhtml#art-of-oncology
We pass them every day on our way to the hospital, the street dwellers of our town in India. Their home consists of a plastic sheet suspended between four poles on the pavement.
One day, two women sat under the plastic sheet in happy conversation. It had rained heavily the previous night, and I wondered what happened to their worldly possessions when water from the skies and dirt from the streets inundated their “home.” The women looked unworried. Perhaps there had not been much to protect. Besides, today’s skies were clear, and the breeze was cool. Today was good.
There was space enough, in home and heart, for these women to provide shelter for a stray. A dog and two puppies occupied a corner of the 10×10-foot awning. I looked at my fellow passengers on the staff bus. It was unlikely any of us would have taken this dog into our homes, yet she was safe with the street dwellers.
Palliative Care Home Visit
A few hours later, we were ready to leave the hospital for palliative care home visits. I reviewed the notes of the first patient, thinking that she should not be facing terminal cancer. She had originally been diagnosed with stage III cervical cancer, but she had discontinued pelvic radiotherapy and came back a year later with an incurable recurrence. I found it distressing when her daughter pleaded at each visit for a cure because the opportunity for a cure had been lost. It was hard to respond when she fell at my feet, sobbing that her mother should not die. “Your mother did not need to be facing death,” I would think to myself, as I waited for the tears to stop. I would then focus on what could be done. We could help with her mother’s pain. In addition, because the daughter appeared so distraught and vulnerable, we took a little extra time to ensure she had understood how the medications should be given. And yet the tears and pleas continued.
Soon we reached the rustic hamlet where the patient lived. She had three other adult children living in the same village, but they had withdrawn from the patient when the disease became messy and smelly. They no longer visited or provided money or food. Only the one daughter had taken the mother into her home and persuaded her to come back to the hospital.
Would they have been less poor, less vulnerable, if they had not opened themselves to another’s need? The hand of empathy, in most of us, is sheltered by the glove of self-preservation.— Reena A. George, MD, and Ramu Kandasamy, MD
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The patient lay on a thin mattress on the floor. There was a waterproof drawsheet to prevent vaginal discharge from soaking through. It was cut out of inexpensive plastic material, similar to that which the street dwellers used as a roof. Part of an old soft cotton sari provided a breathable layer near the skin.
Our service could not afford to provide specialized equipment and incontinence diapers. However, morphine for the pain, daily metronidazole for malodor, and mirtazapine for sleep had made things bearable. The patient no longer cried in pain, so the family could sleep. The patient did not smell, so the family could eat. The eating and sleeping for 6 people happened within a 150-square-foot, 2-room hut. Food may have been scarce, but the son-in-law did not begrudge a part of the family budget being spent on a dying woman.
The Flip Side of a Good Trait
We finished our visit and moved toward the low doorway. Peeping into the hut was a young man with a small head, vacant eyes, and a hesitant smile. The smile brightened to light up his eyes when the patient’s daughter stepped out.
The young man, we learned from our social worker, was not a relative. Microcephalic since birth, he had wandered (or been sent away) from his village more than 40 miles away. He walked the streets for a long time, begging for food. When he reached this hamlet, this family of strangers had taken him in. He had lived with them for many years now. He had even learned to take their cow to graze. A lost sheep found shelter and became a good shepherd.
The young man must have encountered hundreds of people in his travels, yet it was this family with little money or space to spare that had taken him in. Suddenly, I could see the strength in this tearful daughter, whose desperate pleadings had sometimes drained me. The same inability to turn away from another’s pain that had made her stay by a dying mother had made her take in a simple vagrant. Her visceral empathy made it difficult for her to accept incurability. It was a courage transcending anxiety that made her come repeatedly to the clinic despite hearing bad news. This realization reminded me that we know so little about what motivates our patients’ caregivers.
In many interpersonal relationships, the behavior that we find difficult in a person might only be the flip side of a good trait. A heart that was so open to another’s need was a heart that could hurt, that could not bear to see continued suffering. I thought about these simple, poverty-stricken families who had taken in strays, human and canine. Would they have been less poor, less vulnerable, if they had not opened themselves to another’s need? The hand of empathy, in most of us, is sheltered by the glove of self-preservation.
But here was a caregiver who touched the world with naked hands—hands that were exquisitely sensitive, like a blind person’s hands that can fathom the nuances of Braille. Her journey had brought her to a dark and bewildering intersection.
When she had wept in my clinic, I could have looked beyond dissecting problems to acknowledging her strengths. I could have taken her hand and journeyed with her, until she too found what she had created for another—a space to heal. ■