0717-UncertainTrust
0717-UncertainTrust
Ken Wu, M.B., B.S.
“Iknow you are worried about Xin — all of us are, as well,” I told the patient’s mother. “We are not sure why he is confused, but we are trying our best to find out. I cannot imagine how difficult it is for you, but our team will take care of both of you.”
I carefully selected an accurate Mandarin translation for my words — I knew this was a delicate conversation. I was aiming to provide solace in the face of uncertainty, but the unintended inflections of my delivery made the empathic tone sound cautious.
Ren stared at me, her demeanor unchanged. I was unsure how much she had heard or understood. After 4 days, I was the first person to tell her in detail and in her language what we knew about her son’s condition, which was very little.
I had met the two of them earlier that morning; Xin was a lanky, acne-sprouting, 14-year-old boy who was accompanied by Ren, his diminutive but determined mother. He had a bony frame that reflected a teenage growth spurt and calloused hands that attested to a life spent writing in classrooms by day and playing video games by night. They had been about to fly home to China from a 2-week holiday in England when Xin had a 20-minute tonic–clonic seizure in the airport. Four days later, he was still confused and teetering on the brink of another seizure. He was transferred to my team so that we could figure out why, but all we had to offer were more tests, and treatments that could cause more harm than good — the hallmarks of diagnostic uncertainty.
“I don’t believe you,” said Ren. “You already have the test results, so you must be hiding something. Why are you not telling me? Just tell me what is wrong with my son.” The stark simplicity of Ren’s belief that my team was concealing the diagnosis collided with the reality that we didn’t have one, though we wished we did. Her face conveyed a mixture of frustration, confusion, fear, and desperation. It vividly reminded me of my own mother’s face when I was a patient 20 years earlier.
“Blood!” my mother had shouted when I, at age 7, slashed my scalp on the steering wheel of the bumper car I was driving. It was the only English word she could say to the paramedics and the emergency physicians who took care of me. We had left China to start a new life in England less than a month before, and the English my mum had learned from cassette tapes was woefully inadequate for coping with real life in our new country. Once we got to the hospital, the wait for what seemed to her like a simple treatment for a visibly traumatic condition made her fiercely suspicious of the doctors treating me and of the health care system in general. As a baby, I had been sick frequently enough that she knew how to navigate the hospitals in China, but here, she knew nothing and no one. She felt despondent and isolated, and her expression reflected her desperation for action and her longing for understanding.
Faced with another Chinese mother, I instinctively did what my mother had needed two decades earlier: I put one hand on Ren’s shoulder and the other on my heart. I told her my story and showed her the scar on my head that bore witness to my experience. Ren’s expression softened, albeit briefly. She recognized that someone shared her frustrations, but it did not allay her distrust in us.
Ren turned to the people she trusted for answers and comfort. A rotation of her friends and contacts visited, either in person or on the phone: extended family members, anyone she knew who had a medical degree, people studying medicine, those who knew someone who was studying medicine, either in England or back in China. The degrees of separation even reached the office of the Chinese ambassador to the United Kingdom, who called my team to ask what had happened. Openly welcoming everyone, we patiently repeated the same story, sent scans and test results, and explained our treatment plans and diagnostic hypotheses.
It was hard to deny that the team’s collective ego was bruised by our failures, both in diagnosis and in gaining trust. Doctors in Britain are generally highly trusted; 93% of the British public, for example, say they trust doctors to tell the truth.1 By contrast, Chinese physician–patient relationships are rooted in mistrust. Patients implicitly question physicians’ motives, perpetuating a culture of suspicion in which distrust sometimes even escalates to violence.2 Many relationships carry an undertone of financial gain for the physician — an ethos fostered by the Chinese custom of expressing gratitude with material rewards and fueled by physicians’ personal temptation. This dynamic is especially problematic when a patient’s diagnosis is uncertain, since increasingly specialized tests and treatments inevitably lead to escalating costs.
Despite our different expectations around trust, everyone recognized that Xin was very unwell. His condition deteriorated, and his quivering face and shaky hands signaled the return of his seizures. An hour later, he was sedated, paralyzed, and intubated. I went to give Ren an update, but I found her in a paralyzed state similar to her son’s: she was mute and immobile, her expression blank. I was shocked by the contrast with the determined person I’d come to know, the one who spoke with such force of conviction.
Ren remained in this semi-stupefied state while her son was in intensive care. A few days later, one of our tests finally confirmed a diagnosis: anti-NMDA receptor encephalitis. Xin was treated with plasmapheresis to remove from his blood the antibodies that had been attacking his own brain. A revived and relieved Ren accompanied her son when he left the ICU.
Telling this story to my mother, I marveled at Ren’s extraordinary physical, mental, intellectual, and social capacity in extremis and at her ability to call on so many people for help. My mother remarked that she would always rely on her trust in the people she knew and the connections she had. Guanxi, the network of connections and relationships that is essential in Chinese culture and society, not only governs business in China but also retains enormous influence in health care.3
I realized how much I had taken for granted the implicit trust in doctors I expected from my patients and their parents. Though trust may be the keystone of an effective physician–patient relationship, it has to be built and maintained through effective communication.4 When we have to build trust across cultures, we need to translate and understand more than just language.5
One night, Xin spiked a fever. Ren, firmly believing in “sweating it out,” began wrapping her son in layers and closing all the windows. Then the nurses would come in and do the opposite to cool him down. I arrived in the morning to find the two parties at a standoff; both wanted me to translate and convince the other of their error. I told them that when I have a fever, my mother still advises me to do as Ren was doing — advice I politely ignore. My mother was and will always be the bridge between the culture I was born into and the one I grew up in. I realized she was the common ground on which Ren and I could develop our own guanxi.
Ultimately, despite all her suspicions, Ren appreciated our efforts at connecting with her. Thanking me for taking the time to speak with her, she acknowledged our new relationship: “If you visit my part of China in the future,” she said, “I will invite you for dinner.”
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