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Sunday, July 30, 2017

Overcoming lack of empathy with technology

July 30, 2017    Sandeep Jauhar

The device slipped over my arm like a blood pressure cuff. Eight domino-size electrodes were pressed against my skin. I heard a series of beeps and felt a small electrical pulse, like a pinprick. Then, before I knew it, my arm was quivering like a bowl of gelatin.

The demonstration took place this year at a hotel in midtown Manhattan. The device, a new technology called SymPulse, was feeding a signal into my arm that simulated the tremors of a patient with Parkinson's disease. My mother had Parkinson's. For years, I had wanted - and struggled - to understand what she was going through. That day, I finally got my chance.
When the signal from the device reached full strength, my hand was flapping uncontrollably, like a flag in the breeze. It felt both heavy and somehow separate from my body. I was handed a pen and paper. My attempts at writing came out as chicken scratch, illegible even to me. When the power to the device was finally cut, I felt a relief beyond words.

he SymPulse is at the forefront of an effort called "tele-empathy" - using technology to improve insight into the patient experience. Movement disorders like Parkinson's are one aspect of this work, but there are others. Engineers are studying the airflow patterns of patients with emphysema to replicate their shortness of breath in others. A virtual-reality program is being developed to misalign sound from video, a technique called dephasing, in ways that mimic the experience of disordered thinking in psychiatric illness. Gadgets are being made to numb the feet to reproduce the symptoms of diabetic nerve disease.

Computers are often considered a barrier to the doctor-patient relationship, a depersonalising force. Doctors are criticised, for example, for turning their backs to patients in the exam room to type data into the electronic medical record. But in tele-empathy, it is machines that foster understanding and compassion.
There is a great need for this in healthcare today. Lack of empathy in caregivers - doctors, nurses, even loved ones - is one of the most widely voiced complaints in the healthcare field. (The makers of the SymPulse have spearheaded a study of the device in neurologists' offices to see if physician empathy and patient outcomes actually do improve.)
I remember a patient who developed kidney failure after receiving contrast dye, which is sometimes injurious to kidneys, for a CT scan. On my hospital rounds, he recalled for me a conversation he had had with another doctor about whether his kidney function was going to get better: "I said, 'Are my kidneys going to come back?' The doctor said, 'How long you been on dialysis?' I said, 'A few days.' And then he thought for a moment and said, 'Nah, I don't think they're going to come back.'"
My patient broke into heaving sobs at the memory of the callousness. "That's what he said to me," he cried. "Just like that."
As a caregiver, I, too, was sometimes impatient with my mother as her condition declined. Even though I am a doctor, I could not understand (or perhaps accept) how she had become so helpless: why it took her an hour to get dressed; why she rarely felt like talking. Leslie Jamison, in her book The Empathy Exams, writes that "empathy is measured by how thoroughly an experience has been imagined". Books, support groups and role-playing exercises may offer some insight into the patient experience, but the promise of machine-directed empathy is that it eliminates the need for such imagination.
Whether the result can fairly be called empathy, I am not sure. Temporarily experiencing an alien sensation of discomfort does not necessarily lead to compassion for those who endure it in real life. But if tele-empathy does improve compassion for our most vulnerable citizens, it will have served one of caregiving's most important functions.
A sad incongruity of caregiving is that patients often have a greater capacity for empathy than those of us going through our lives largely unencumbered by illness. I remember one evening when I was helping my mother up the stairs to her bedroom. She was walking slowly; after several recent spills, she was terrified of falling again. But even as she struggled, her hands turning white as she gripped the banister, she turned to me and said, "This must be so hard for you."
• The writer is the author of Intern: A Doctor's Initiation. He is at work on a history of the human heart.
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