Just a few weeks ago, my grandpa’s brother, or my great uncle, passed away from cancer at the ripe age of sixty-nine. To be honest, I didn’t feel as sorrowful as the rest of my family. We had only met three to four times a year and had even less opportunities to talk with each other. Still, his seemingly normal death made me think deeply about his journey starting from the day he was diagnosed. Did he intentionally choose his destiny? 

My dad recalled the entire story to me.

Towards the end of 2024, my great uncle started to feel numb in his left arm. Upon arriving at Tianjin hospital to get himself examined, the doctor discovered a malignant tumor inside his brain and suggested he undergo surgery. To receive better treatment, my dad transferred him to another expert in Beijing, who found out that my great uncle also had gliomas in his head. The expert pointed out that the risk of taking an operation still existed, and it wouldn’t solve the problem completely even if it was successful. Moreover, the time it took to undergo chemo and radiotherapy would be considerable. After taking some thought, they opted to not get surgery and decided to pursue less invasive alternatives instead. 

Yet oddly enough, my great uncle didn’t even know that he had cancer, let alone that he was getting closer and closer to death by the day. His children feared that their father would be too weak to bear the truth of his mortality and refuse to take any medication. His family was also afraid the truth would cause undue stress on him, which would only worsen his condition and accelerate the development of his disease. As a result, it was his children, rather than my great uncle, who made the decision to forgo surgery.

But life still went on. In the first four months, my great uncle felt well enough to continue living a quality life. However, his numbness in his left arm became more severe in the fifth month, leaving him with a weak mental state and even weaker body. At this point, his family still did not tell him the truth about his cancer. Instead, they pretended that he had a treatable cardiovascular and cerebrovascular condition, which had more viable treatment options compared to cancer. A month later, the disease developed further and my great uncle’s entire left body became entirely paralyzed. He was drowsy and bedbound, unable to chew, with porridge as his only sustenance. With some cranial pressure-lowering medicine, he only felt marginal relief while trapped in his bed. 

My father still remembers the scene of when he visited my great uncle for the last time. My great uncle was moribund. When he tried to say something with some movement on his lips, my father couldn’t hear what he had tried to say; when he stared at my dad, who was also a doctor himself, a great sense of hope and eagerness filled his eyes. It would be the one standing in front of him, he thought, who would definitely cure his illness in the end. My dad, realizing what my great uncle was thinking at the moment, was deeply sad, realizing there was nothing he could do. Even telling him the truth now about his prognosis would be more than too late. 

After a few days, my great uncle passed away. After staying in bed for more than two months, having poor living conditions, and lacking professional mental health support, he probably died in hopelessness, fear, and quiet despair. 

When my dad finished retelling his account of my great uncle’s last days, something stirred inside me emotionally, although my face was calm and neutral. Although I felt angry about his miserable experience, I had to begrudgingly admit that these situations were not entirely uncommon in China. In fact, numerous families will often hide their family member’s diagnoses from them, and “help” them to decide whether to accept treatment.

The reason behind this problem is the “special clauses” in Chinese medical regulations regarding the “right to be informed”. According to The Civil Code of the People's Republic of China, doctors are legally required to tell their patients in most situations about their medical diagnosis, the treatment plans available to them, and its potential risks. However, that same Civil Code also allows exceptions to this rule. If a doctor judges that their patient is not ready to accept their diagnosis for whatever reason, they can choose to omit the information from them and tell their family members instead. 

Family members will also weigh in on major decisions for the patient with advice or wisdom, but this can often lead to conflict and weaken the bond of trust between doctors and patients. I also read how Chinese culture, which is rooted in Confucianism, often turns what should be a private discussion between the patient and their medical team into open family discussions. Gaoyuan Zhai wrote a research article on this called “Improving Chinese patients’ autonomy in medical decision-making through policy frameworks,” where they called this problematic dynamic “medical familialism”.

Essentially, the patient’s right to decide whether they want to get treated, what options they will pursue, and by proxy, their medical autonomy, is given to others in their family instead. Isn’t it horrible? On the contrary, Western doctors will always make sure the first person to know about the diagnosis is the patient themself. 

We cannot forget that a patient’s freedom to choose what to do with their life is the core foundation to receiving or delivering quality healthcare services, regardless of where they are in the world. But once you take that basic freedom away, that core pillar of public health is bound to give way to other public health inequities. In other words, patients who get their decision-making powers revoked are oftentimes at the mercy of systemic and interpersonal power imbalances, possibly long before they even entered the medical system.

I once came across a questionnaire in China that asked, “when your family members get diagnosed with cancer, would you tell them the truth?” and “when you get cancer, would you be willing to know about it?” The results showed that among 2,000 participants, 74% of them said that they would choose to hide the information from their relatives, but, ironically, only 85% of them would like to know about their own cancer diagnosis. What the numbers tell us is that we aren’t actually afraid of dying from cancer, contrary to popular belief. Instead, our real fear is the potential dishonesty we would experience from our families had we been put in these tough situations. In my opinion, it’s a totally reasonable fear to have. Since only patients know best about what’s happening to their bodies, no one should make decisions for them, especially when it comes to their autonomy.

What if my great uncle knew about his physical condition and had the chance to choose differently for himself? Given the financial hardships of his family, I‘m pretty sure that he would’ve still given up treatment because, being the industrious and prudent man he was, he would feel too ashamed to let his family spend such a huge amount of money to avoid his eventual demise. 

So why does his decision matter if he would’ve died either way? At least his death would’ve been the product of his own free will and choice as opposed to medical neglect. He would’ve clearly knew what his choices meant to him, and whatever happened to him, he would accept the consequences with no resentment in his heart. However, it was his family who imposed a fate he never accepted onto him. 

Although changing China’s civil codes, culture, and healthcare standards is undeniably a long uphill battle, we can still be proactive and make small meaningful changes in our personal lives to improve patient autonomy. We can learn how to be more honest with each other, have these hard conversations, and understand when it’s appropriate or not to share a potentially life-changing decision with family members. While family values are important, we must realize that individual autonomy is crucial to balance with group collectivism.

From my perspective, not only should we be able to hold the right to decide our fate in our hands, we ought to also respect others’ freedom to make decisions about their life and death. In other words, every person in this world has the right to be informed about their state of illness. And whether they should pursue treatment should be entirely up to the patients themselves. In doing so, we can better guarantee every patient’s right to the treatment they deserve, truly reducing public health inequalities.