A Chinese City Doctor’s Notebook–Chapter Three

In my four years of Canadian medical school, I can only remember being taught four clinical pearls specific to Chinese patients. The first two were epidemiological facts: Hepatitis B is endemic in China and Chinese people have a higher incidence of nasopharyngeal carcinoma than non-Chinese. The third was an observation, that Chinese babies are often born with a large, purple discolouration on their buttocks that fades with time. These discolourations were pejoratively called Mongolian blue spots. 

The fourth clinical pearl was the strange one. I don’t remember much about the classroom content of first-year medical school, but this moment sticks with me even now, two decades on. In ethics class, we were learning about the concept of patient autonomy, the concept that patients have the right to make choices about their own health care. At this point, the ethicist mentioned to us that in many Asian cultures, especially Chinese and Japanese, people chose to forego autonomy and informed consent when it came to elderly family members and end of life care. What she meant was that Asian families often withheld information about the nature of their parents’ terminal illnesses from them for fear that by telling them parents the truth, their parents would feel irrevocably sad or upset, and that this might even hasten the progression of their illnesses. Until that day, I had never heard of this issue of withholding information from elderly family members before. As a Chinese Canadian, I had taken it for granted everyone would want to know the truth about their health when the time came. 

A few months after that talk, I was at home and broached the topic with my father. 

“Dad, they taught us that Chinese don’t like to tell elderly people that they are dying in order to protect them. Have you ever heard of this?” 

“Of course. You didn’t know about this?” He raised an eyebrow and gave me a look, as if surprised at how little I understood the world. “For Chinese people, we don’t talk about these things. If you know you are sick and dying, then your sickness will be worse.” 

My father was a learned man. He was a PhD in economics and had lived in North America for more than half his life. I expected more from him. “So you’re telling me that if it was you, you wouldn’t want to know?” 

“Of course I wouldn’t want to know.” 

His answer startled me. I had known that we had some different conceptions rooted in our different backgrounds, but for some reason, this caught me by surprise. I had expected him to share in my discovery of something that I presumed was backwards, old-fashioned Chinese thinking. But now it turned out that he was exactly the person being described in the ethics handbook. How little did I know of the world? How little did I know of my father? 

I dug out my first-year ethics textbook the other day and found the specific passage in question. On the subject of autonomy and Asian patients, the author Philip C. Hébert explains: 

While some countries in Europe and in Asia place less emphasis on the patient’s autonomy, this may change with time as the notion gains a foothold in their courts and as citizens come to play a more active role in their medical care. For example, in Japan, where medicine has traditionally been very paternalistic, the patient’s right to information is gaining ground. In 1995, the national cancer centre decided that patients must be given a form explaining cancer and the side-effects of various treatments. There is now some evidence that patients in widely disparate countries wish to make decisions about the treatment they receive, especially if seriously ill. (Hébert 26) 

When I read the passage over now, I can’t help but find it jarring. For an ethics textbook, the passage does seem to make the assumption that the western way of autonomy is the only right way. I wonder why I didn’t feel that way when I read the passage the first time so many years ago. 

This specific issue, that of telling an elderly family member about their diagnosis, became the basis of The Farewell, a 2019 film directed by Lulu Wang starring Awkwafina and Tzi Ma. The movie was loosely based on events from Wang’s own family life, in which an elderly grandmother is unaware that she’s been diagnosed with lung cancer. In the movie, the grandmother’s extended family decides that they want to have one last big family get-together but they can’t tell her about her diagnosis. They plot an elaborate fake wedding for one of the grandchildren and use it as an excuse to get everyone together. The movie is told from the vantage point of Billy Wang (played by Awkwafina,) the Americanized granddaughter who loves her grandmother and doesn’t really understand why they can’t tell her the truth. 

By the end, the movie settles on making the point that although the Chinese way of not telling the elderly about the diagnosis is different from what Billy is used to in the West, it isn’t necessarily worse, and it might even have its own merits. 

The movie wraps up with a postscript that Wang’s grandmother in real life is still living happily a good six years following her diagnosis. The movie implies that by not burdening her with the truth, the family has managed to improve the grandmother’s quality of life for at least these last few years, and hints that they might even have possibly affected the outcome of her illness and helped send the cancer into remission by not burdening her with the truth about cancer. 

In my own medical career working with Chinese immigrant patients, I have witnessed versions of this issue arise on several occasions. Several times, I have been asked by well-meaning children that “should anything serious ever happen to my mother or father, please do not inform them of the situation.” 

Sometimes, the request is gentler. “If any really important bad news needs to be broken to the parents, please let me know first and then we can discuss what to do about it.” 

As I’ve come to understand it, the reason for the request is a combination of things. There’s the obvious, overarching cultural basis to it. Confucius may not have ever specifically addressed the issue of whether people should withhold life-threatening medical diagnoses from their parents, but he did repeatedly underscore the value of filial piety and how one’s loyalty to one’s own parents should in some ways exceed their loyalty to themselves. So, in a way, not telling our parents the truth about their own mortality is just a little white lie to ease help ease a loved one through one of life’s inevitable travails. At least they’ll feel better not having to worry. 

This leads to the second reason, the belief that knowledge of one’s own mortality will almost certainly worsen any medical condition and hasten one’s demise. Given our own modern understanding that stress can make health worse, it does make sense to presume that fear about one’s own demise, very likely the greatest stress of all, could have deleterious health effects on a person who is already ill. 

Finally, sometimes the reason for requesting us to forego patient autonomy is simple pragmatism. Maybe mom or dad are unable to handle stress even at the best of times and we already know they won’t take the news well. In this case, shielding them from the truth might make a lot of things go more smoothly. 

In any case, when I’ve been presented with this scenario, as a Westerner, it’s difficult to dial down the urge to sit the patient’s family down and start channeling American police and cowboy movies. I can just imagine myself putting my hand on my holster and informing them that, “Ma’am, this isn’t the way we do things around here.” 

In my early years in practice, this is pretty much how I approached the problem, by understanding it as a purely cultural difference, and assuming that the ethics underpinning autonomy and informed consent should have universal application to all patients, regardless of cultural background. My understanding was that if you were living in Canada, then you had better accept that you had to do things the Canadian way. In short: when it comes to medical care, this is how we do it here. 

With that in mind, I’d sit down with the family member and explain to them that while we respected that other cultures could feel differently about this issue, this wasn’t really the way it’s done in the West. Then I’d present a compromise. “How about I ask your parent a hypothetical question along the lines of ‘if something were to happen to you, would you want to know about it?’” 

I’ve done this on several occasions in my career, and without fail, each time the elderly patient would contemplate the question for a moment before shaking their head and deciding that that no, they were better off not knowing the truth. 

As I’ve gone further along into my career and watched over my patients for almost two decades, I’ve thought about this question many times, and more questions have been raised.. 

What’s the big deal about all this? What happens if Grandmother or Grandfather doesn’t know the truth about their own illness? Is it really such a big problem if their child makes all the major medical decisions for them while they exist in a state of unknowing bliss? Isn’t that not that different than how parents often approach major medical decisions for an infant or a small child? 

And what about patients who explicitly abdicate responsibility for their own health at the eleventh hour? If the parent specifically says that they don’t want to know about their illness, then what? What are the implications of them ceding responsibility for this portion of their life to their loved ones? 

On a very basic pragmatic level, the parent not knowing about their own medical illness throws a monkey wrench into the basic efficiency of the health care encounter. In the West, certain aspects of health care depend on the patient being able to make informed choices, or at least depend on them having the knowledge of their illness. 

Imagine attempting to go for surgery or chemotherapy but not actually knowing that you have cancer. Imagine furthermore, that all the nurses and doctors who talk to you, who know full well that you are dying, cannot slip up even once and tell you the truth about what you are facing because once they spill the beans, there’s no putting anything back into Pandora’s box. 

Treatment decisions that might normally just be a quick conversation with a patient, now need to be run by an intermediary. Doctor visits that take ten minutes now take twenty minutes as a result.  

Furthermore, the practical effect of withholding information doesn’t end with health care. It applies even beyond the medical aspects of end-of-life care. Estate planning, inheritances, all the things that give grieving families around the world even more grief, are much more easily dealt with if the person who is dying is able to say what they actually want done. Except they can’t, if nobody actually is allowed to tell them that they are dying. 

There’s also this aspect from the family member’s standpoint: when a person agrees to make all medical decisions for their parent, they are agreeing to take responsibility for some decisions that are essentially impossible to make, especially when it pertains to end-of-life care. Should we perform heroic, but most likely futile measures on your parent? How hard is it for someone, even if they’ve had a full discussion with their parent, to be willing to make these life and death choices on behalf of their parent? 

Perhaps I’m giving away my Western upbringing, but I still can’t help but feel that there is something inauthentic about withholding the truth. Imagine living your days in an imagined reality where you believe you aren’t actually very sick, but you are. Without this end-of-life discussion experience, the person who is sick, and very likely their children, are not able to emotionally share life’s final journey together. Since it’s a journey that we all have to take, and it’s well-accepted that a serious illness or death in the family is one of the most difficult and stressful things that anyone has to go through, it only makes sense that if we can talk about it as a collective, surely we could deal with it better together than going through it alone. 

In the West, we are proud to have come up with these ethical principles that define our medical care. We laud the principles of autonomy and informed consent and look down at cultures that do things a different way. But as I’ve gotten older, I’ve noticed that in fact, Eastern and Western ideas about this aspect of medicine are not as dissimilar as we might presume. Yes, it’s true that in the West, as doctors we make a point to talk to the patient about death. We’re not afraid to tell a patient they have cancer, and we’re not afraid to try to tell them that the end is near. But at the same time, we usually stop right there and don’t say much beyond that. 

What does it actually mean to be dying? How does that make you feel? Is it scary? Do you have any regrets? Is there anything else you would like to do before you go? How does it make your children feel? Is there anything we can do to help with any of this? These are not conversations doctors typically have, but they seem to be at the heart of facing death honestly and authentically. 

The fact is we’re mostly not trained as doctors to have these conversations. Quite frankly, I’m not sure that most of us even have these conversations at home with our own families. It’s too easy, most times, when faced with these end-of-life crises, for doctors to leap into problem-solving mode. That is, after all, what we’re best at. End of life care sometimes becomes a series of day-to-day crises to manage. You’re having difficulty getting up? We’ll bring in a wheelchair. Constipated? There are so many pills for that. In pain? Good thing narcotics have been invented. As doctors, we’re trained to reflexively problem-solve. But sometimes, maybe what people need as they face death, is just someone to be present, to listen, and to talk to. Death may be inevitable, but it can still come with catharsis. 

Fortunately, the culture of Western medicine is changing. Conversations around death have become more normalized. The development of palliative care, a relatively new field of medicine that has appeared in the last several decades, has certainly helped this process. When it comes to death and dying, medicine in both the East and West still has much to learn, but at least we are trying. Maybe we will get where we need to be someday. 

My father was diagnosed with Alzheimer’s dementia in 2013. Shortly after he was diagnosed, we were faced with the issue of establishing power of attorney and determining what to do in the event of end-of-life care decisions. At the time, his illness wasn’t that severe, and he was a pleasant, if mildly confused, sixty-eight-year-old. He’d even been driving up to a few months prior. 

So one night, at dinner at my mother’s house with my sister and me present, we took out the power of attorney paperwork and gathered around the dinner table with him. I remembered how he’d told me so many years ago that he wouldn’t want to know if he was suffering from a terminal illness, so I tried to explain to him that we weren’t asking him these questions because anything was imminent, but just as a precaution for the distant, distant future; we wanted to know his wishes in advance. We asked him that in the event he became incapacitated, what would he want us to do? Did he want heroic measures like CPR and being put on a ventilator? 

I still remember him looking back at us, sheepishly, like a small child. It’s impossible to know just how much he understood in that moment. 

He smiled and said, “I guess if it’s already that bad, you don’t need to do anything.” 

Then he got up and shuffled off to the living room. 

I breathed a sigh of relief. It was obvious that, demented or not, it was a conversation that my father had not wanted to have. And the same went for me. 

I never talked to him about his diagnosis again. 

Web photo by Alexander Grey