There are over 50 words and phrases for death in Mandarin. One saying in particular, sǐ qù huó lái, which is to occupy a state hovering between life and death, echoed in my mind as I sat in the neurological ward of Beijing's 306th Hospital. In this state of uncertainty laid an array of patients, including the comatose and the paralyzed, all struggling with varying levels of brain damage. In this foreign country, I looked into my grandfather's eyes, grasped his familiar hands, and wept. His hands still felt strong, hardened from years of manual labor fixing government buildings but were visibly wrinkled and leathery with age. I wanted nothing more but to joyously reminisce together about my childhood and chronicle to him the adventures of my life since spending 10 years apart. However, I knew that he couldn't speak, stand, or even recognize my father, much less me.
One early April morning, just as the sun had begun to spread its rays across the sky, my grandparents went out for their daily walk around their apartment complex. No one quite knows what happened next. He may have tripped over a rock in his path, or just fallen down from weakness or pain from one of his chronic conditions. However, his medical records detail the consequences: “head trauma,” “intracerebral hemorrhage,” and “extensive damage to multiple lobes.” Every next second in the following moments was critical. In my grandmother's panic, she tried to yell for help, but the overwhelming hysteria of the moment triggered her own heart attack. There the elderly couple laid together on the hard concrete sidewalk, in desperate need of assistance. Over 20 min passed. In that timeframe, multiple bystanders walked by, only to leave the scene and carry about their day as if nothing was wrong. I imagine that they felt shocked, but quickly hurried away as if their haste in leaving would absolve them of all responsibility. Only after this extended period of time did one of their neighbors feel compelled enough to call for help.
Later while in the hospital, after my father had bought an immediate plane ticket from the United States, the family was informed that further brain surgery would have a 5–10% survival rate. Even if successful, there would be the loss of critical functions and there would be no chance of a full recovery. Yet in their eyes, there was no other option. When I visited the hospital, four months after the surgery, I saw my grandfather as only a vestige of his past self.
As a medical student, I could explain the pathophysiology of his deterioration and had extensively debated the pros/cons of palliative care measures for simulated cases in my medical ethics courses. Yet in this moment, I was only consumed with more questions: How could multiple people walk by two seniors having medical emergencies and not step in to help? Why did my family feel like enduring additional suffering was the only solution?
In the next months while abroad in China, I studied the sociocultural environment and interviewed countless patients and physicians about the healthcare system. As I simultaneously observed my family grapple with medical decisions on how to take care of my grandfather after his debilitating head trauma, this context allowed me to bridge the cultural divide to understand how Chinese values fundamentally shape the end-of-life beliefs.
The structure of social relationships in China causes people to feel powerful responsibility to their family, but a sense of detachment to strangers. The duty one feels toward others is primarily based on the degree of relation to oneself. As a consequence, the death and suffering of others is met with callousness for strangers, while family members will go to extensive measures to prevent their loved ones from dying. While this phenomenon is not unique to China, it manifests itself in dramatic extremes due to the established relationship structure in Chinese society.
The basis for many modern Chinese values and ideology is Confucianism. In this philosophy, the concept of filial piety is consistently emphasized. Filial piety is the virtue that individuals must uphold strong obligations toward their family members, which operates under a hierarchical structure with elder generations deserving of the utmost respect. This belief stems from the idea that an individual's life is the physical continuation of their parents’ bodies (Hwang, Reference Hwang1999). Based on Confucian role ethics, the family is the core element that forms the basis of a harmonious and moral society. The expectation that people will care for their family, no matter the personal cost, leads Chinese families to have high rates of co-residence with elders and also to exhaust all medical options before accepting death.
Death is one of the biggest taboos in Chinese culture, as even mentioning the topic in a conversation is said to lead to bad fortune (Xu, Reference Xu2007). For my father, who lost his mother in his early 20s, the topic of death has always been an especially sensitive issue. In fact, he becomes enraged if the word is uttered in his presence. The Confucian emphasis of an individual's responsibility to family exacerbates the anxiety that people have about death. In addition to fearing the loss itself, people worry that if they do not attempt all of the medical treatment options available, then they will be perceived as failing their familial duties. In China, palliative or hospice care treatment is uncommon, and after deaths of individuals, patients are known to verbally abuse and even resort to physical violence toward the medical staff (Li et al., Reference Li, Davis and Gamier2011).
My family's decision to go forward with surgery despite the perilous complications and risks, demonstrates the lengths that family members are willing to go to avoid death for their loved ones. Although the procedure brought pain to all parties involved, the whole time my family refused to accept palliative measures as a possibility.
Despite the strong responsibility to family members, the deaths of individuals outside of this core unit are viewed with apathy in Chinese culture. Part of this attitude might be a symptom of practicality. While living among 1.4 billion other individuals, corruptions and scams are common. When people don't trust strangers out of fear of being deceived, the only others who individuals can truly rely upon is their family, making this group even more precious and valuable.
The bystander effect, the psychological theory that individuals are less likely to intervene to help victims in public emergencies, famously occurred with a 2-year-old Chinese girl named Wáng Yuè. After being hit by a car, 18 bystanders walked by and ignored her body in the street. One woman who walked by the scene later admitted that she left the situation without helping because, if “nobody else dared to touch her, so how could I?” (Osnos, Reference Osnos2014). These incidents of apathy demonstrate that unfortunately the belief that death must be avoided at all costs, unfortunately do not extend to assisting strangers in need.
Although multiple bystanders passed my grandparents, people chose to ignore them out of fear and distrust. These individuals likely used personal moral justification to not step in, by convincing themselves that my grandparents didn't need help or were trying to defraud them. Yet despite this risk, these individuals had to exhibit significant apathy to ignore the tragedy of the situation.
My grandfather's emergency was a heart-wrenching example where the two dichotomous manners of how Chinese culture views death and dying impacted his outcome. Multiple bystanders didn't do anything to help my grandparents, but my family was willing to risk my grandfather's quality of life and undergo personal sacrifice in order to extend his life.
On the one hand, traditional Confucian tenets foster a deep sense of duty between family members. However, this is contrasted by a weak social responsibility to strangers. These relationships between individuals directly impact how the Chinese view the end of life. Individuals pursue all medical measures available, no matter the financial or personal cost, to avoid death for their family members; otherwise, it would represent a failure to uphold one's social obligations. However, for non-familial individuals, death is viewed with distance instead of empathy.
As a Chinese American in training to become a physician, I have grappled with my distinct cultures, trying to understand how they have impacted my family's and my patients’ medical decisions. For example, immigrants from China often face issues navigating advance care planning that conflict with their traditional beliefs (Hsiung and Ferrans, Reference Hsiung and Ferrans2007). My grandfather's story illustrates the complexities in which Chinese families navigate issues of end-of-life care and death. Healthcare professionals who care for families from diverse backgrounds must take in these experiences with understanding and compassion; otherwise, we risk alienating the patients in our care.
