Carrie Coon, Letts’ wife, plays Agnes White, a lonely server living in an Oklahoma motel who falls in love with Peter Evans (Namir Smallwood), an AWOL Gulf veteran. Peter becomes increasingly convinced that he is the subject of clandestine experiments, and that he is infested with government-planted bugs. These bugs are, of course, invisible, yet he drags Agnes with him into a seeming folie à deux—a bedlam of flypaper, aluminum foil, and bug zappers.  

Peter’s delusions (and, in turn, Agnes’s) eventually cross a line into a realm in which logic no longer applies. By spilling so far into excess, even occasionally veering into bizarre spoofiness, Bug risks trivializing Peter’s paranoia—a risk especially fraught now that the part is played for the first time by a Black actor.  

Initially, Peter cites a real case of government experimentation: the Tuskegee Syphilis Study, in which poor Black sharecroppers were never told they had syphilis. The experiment ran from 1932 until 1972—long after penicillin became the standard treatment in the mid-1940s. To observe how the disease naturally progressed, researchers deliberately withheld the antibiotic, ending the study only after a press leak. 

This gross violation of ethics is widely believed to have damaged Black Americans’ trust in the medical establishment. But according to medical ethicist Harriet A. Washington [1], “that narrative is flawed and untrue.” While Tuskegee certainly contributes to that distrust, the larger impetus is “four centuries of abuse in the medical arena,” which Washington chronicles in her 2007 book Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present. “In fact, one study indicated that African Americans who had never heard of Tuskegee were more likely to fear vaccine administration and medication design.” 

What if Bug had dialed down Peter’s paranoia and explored it within this broader historical context instead of reinforcing the singularity of Tuskegee? Overemphasizing Tuskegee because of its infamy (or because of one’s ignorance) serves to obscure other historical ethics violations as well as systemic racial inequities that persist today. For instance, what if Peter struggled to access mental healthcare because of structural barriers? 

In her 2021 book Carte Blanche: The Erosion of Medical Consent, Washington mentions an experimental anthrax vaccine that soldiers were required to receive beginning in 1998. “Soldiers of all races were affected,” she writes, “but Blacks were overrepresented because they constituted 12.3 percent of Americans, but were 24.5 percent of the 1.7 million ground troops deployed to the Gulf in 1990 and 26.2 percent of Army reservists in 2001—twice their representation in the population at large, and so at twice the risk of being forced into military research.” 

Many service members reported autoimmune conditions after getting the jab, but the Pentagon attributed their symptoms to “emotional issues,” Washington continues. “The military subsumed vaccine-related illnesses under the nebulous symptomatology of ‘Gulf War Syndrome.’” What if Bug had dramatized that ‘nebulous symptomatology’? 

Peter also references another example of government research: the Edgewood Arsenal experiments. After World War II, the U.S. Army Chemical Corps tested chemical weapons on American soldiers at a secluded research facility on the Chesapeake Bay, exposing volunteers to more than 250 different chemicals, including LSD, mustard gas, and sarin. The studies ended after researchers were accused of ethical transgressions, including issues with informed consent and recruitment. Archival footage, unearthed in a 2022 documentary, shows men “going temporarily blind, reduced to babbling or completely dysfunctional logs, or worse, ready to commit violence upon themselves.” [2] 

Washington argues in Carte Blanche that “the medical crimes that were denounced and punished at Nuremberg have American analogues.” 

“Although not perfect parallels,” she notes, “they share a violent, nonconsensual, and largely racial disparate nature, as well as the frequent invocation of military expedience.” 

In this light, Peter’s condemnation of his doctors as neo-Nazis feels less outlandish than the play permits. Letts may hint that Peter is not entirely psychotic—that his madness holds some truth. But that seed never grows.  

The play ultimately bubbles over (spoiler alert: self-harm, violence, and fire). A future iteration of the three-decades-old play, if there is one, might benefit from taking Peter’s delusions more seriously—and leaving open the possibility that they are, in fact, real. 

Bug will get under your skin, but to what end? 

Bug, through March 8th at the Samuel J. Friedman Theatre in New York; manhattantheatreclub.com/shows/2025-26-season/bug/.  

[1] “Harriet A. Washington on the Narrative Around Vaccine Hesitancy in the African American Community: In Conversation with Andrew Keen.” Keen On from Literary Hub, 19 Mar. 2021, lithub.com/harriet-a-washington-on-the-narrative-around-vaccine-hesitancy-in-the-african-american-community/. 
[2] Simonpillai, Radheyan. “‘It Affected a Great Number of People’: Inside the World of Shocking Military Drug Experiments.” The Guardian, 9 June 2022, theguardian.com/tv-and-radio/2022/jun/09/dr-delirium-and-the-edgewood-experiments-documentary. 

Web image by Matthew Murphy.

In 2019, a prominent obstetrician/gynaecologist in Toronto was found guilty of administering intravaginal medications to his obstetrics patients for the purposes of inducing labour without consent. He was subsequently dismissed from his position at the hospital and his career ended. The story was covered in detail in an exposé published in Toronto Life magazine. 

The details of the case are lurid. In the modern age, most obstetricians do group call. Gone are the days when an expectant mother would have both her prenatal care and delivery done by the same physician. Newborn babies are wont to arrive in the world at any given moment, and the traditional obstetrician who drops everything they are doing to attend these deliveries, often in the middle of the night and often with a full day of office work the next day, is all but extinct. Obstetricians now share call duties with a team of physicians. Now, when you sign up with a certain obstetrician, there’s no guarantee that that specific doctor will be the one to deliver your baby, only that someone from their group will be doing the delivery. 

In Ontario, obstetricians are paid more for delivering babies on weekends than they are on weekdays. It’s a nice little reward for doctors who usually work long and unpredictable hours. But in this one hospital, the obstetrics department began to notice that one of their staff had a propensity for babies being delivered predominantly on weekends and evenings and began tracking the matter. 

In time, they discovered that this doctor was inserting tablets of misoprostol into the vaginas of late term pregnant patients in order to induce labour on specific days that were to his advantage, often when the date in question was a weekend. Misoprostol has the ability to induce contractions and is often used in medical abortions. It is not considered to be a medication safe to use in pregnant women to induce labour on command. Needless to say, the patients did not give informed consent for the procedure, nor were they offered the option to decline.The doctor in question was a prominent member of Toronto’s Chinese Canadian community. He had a reputation for being a doctor to the rich and chic. Famous Hong Kong celebrities flew to Canada to have their babies delivered by him and my own patients flocked to him in droves. 

In Toronto, getting a referral to a community obstetrician of choice to deliver your baby is like trying to get your child into an elite private school–no doubt, these actions are often being done by the same parents, just a few years apart. Obstetricians have a set number of expectant mothers they can carry for any given month and once that quota is exceeded, they can’t accept any more patients. In those years when I first started working as a family physician, Chinese immigrant women in my community knew to race to our office as soon as they suspected they were pregnant, so as to get into the front of this doctor’s queue. They were then told by the obstetrician’s office that they were expected to pay a three-hundred-dollar administrative fee in order to guarantee this doctor would be present for the delivery, which they gladly paid.^⁠1 

At the time, it seemed reasonable. Three hundred dollars and your doctor would buck the modern trends of group call and shared team duties and promise to come in on his night off to personally deliver your baby. It all seemed legitimate and altruistic, a call back to a simpler time. If only. 

When the story broke, there was the expected furor in the local medical community. Certainly, the salacious nature of the case, the prominence of the doctor in question, the #MeToo movement which was also taking place around this time, gave the story its pull. 

In the local Chinese community, the story had buzz as well. Toronto, with its large Chinese-speaking population, has several Chinese daily newspapers and the story made headlines in the local Chinese newspapers and filtered its way through all of us. It felt like everyone’s mother had heard of this doctor; he was that well-known. 

As I spoke to patients and friends and colleagues, I discovered so many people around me had had their children delivered by this doctor in the preceding decades. As they reflected on their obstetrics journeys, the stories were all the same. Yes, it was true, many of their babies had happened to arrive on a weekend. Yes, the labour started soon after an assessment, right on schedule and with what had seemed like fortuitous timing at the time. Now, in retrospect, it all seemed fishy and possibly sinister. 

But one thing that I noticed was that this doctor’s actions were met with largely a collective sigh of indifference by the Chinese Canadian community. The lack of outrage most people had towards the story felt odd. Remember, this story was occurring near the height of the #MeToo movement. The idea of a doctor administering intravaginal medications without consent should have, in the West, been seen on the level of battery. At the very least, I expected people to think of it as a violation of a woman’s body. But in the Chinese community, amongst the population that knew this doctor the best, the reaction was muted. Most of his patients that I encountered shrugged off the story. When the subject came up, they were quick to point out to me that he was an outstanding doctor who had helped many people and were disappointed to hear that the doctor was no longer practising. 

In China, women’s reproductive rights is an issue with a thorny history, especially over the last several decades, most of which I was oblivious to until I started working with my own patients. 

The most blatant and obvious reproductive rights issue is China’s One-Child Policy, which ran from 1979 to 2015. During these years, families in China were limited to having only one child, except in special circumstances. The One-Child Policy was formulated in response to the Chinese government’s fear of overpopulation. 

In my naive understanding of China, I was taught the official narrative, that people who had more than one child were subject to higher rates of taxation, and it was the punitive toll of this taxation that kept parents in line. 

But the truth was more complex. What were people’s expectations about birth control? What happened when people didn’t agree with the government’s policy? What happened to people who had an extra child on purpose? What happened if they had a child accidentally?  

When I started working, I soon noticed that all middle-aged women from mainland China had intrauterine contraceptive devices implanted in their uterus. Mostly, they had had these devices placed after delivering a baby years earlier. In many cases, these IUCDs had been present in these patients’ uterus for so long that many of them often forgot to mention it to me, only informing me about the presence of these devices sometimes when they were in their late fifties or early sixties, long after the device had ceased to perform any useful function. Often times, we’d discover that these devices were present during a routine ultrasound, and the patient would remember that yes, they had been wearing an IUCD for so long that they had simply forgotten about it–it had simply become a part of them. This wasn’t an entirely benign situation. The longer an IUCD remained in, the greater the chance it would slowly embed into the tissue of the uterus. Albeit rarely, there are case reports of it rupturing the uterus of women after decades being left in. 

Even after I realized that so many of my patients were wearing IUCDs, I still didn’t fully understand what this meant. I had in my mind envisioned the Western model of women’s reproductive care, that the mother had informed her obstetrician in China at some point after the delivery that she would have an IUCD inserted because yes, she was certain she didn’t want to have another child for a few years. I envisioned a long conversation where a medical professional gave the patient a series of options about contraceptive care. Did the patient want an IUCD? Or maybe to try the birth control pill? Or did the patient want to use natural family planning methods? It was only gradually that it dawned on me, that these were conversations we only had in the West, not conversations women had in China. They weren’t given the option of having an IUCD inserted. They were simply told what to do, or had it done unto them. 

But my women patients didn’t seem bothered by this. They never expressed outrage at having an IUCD. It was again, the collective shrug of indifference. It wasn’t that different than being told that they had to pay taxes. Or have a mandatory retirement age. It was just another curious aspect of life in modern China.  

I couldn’t envision what it meant for a society to exist where a government somewhere could decree that all women would be forced to have a copper intrauterine device placed in their uterus upon having a baby, whether they liked it or not, and that it would remain in place indefinitely. It seemed even more preposterous that almost all the decisions said government made were made by men–the Chinese Communist Party is well known for being almost exclusively male at its highest levels. 

The actual IUCDs that the patients wear bear mentioning also. In North America, IUCD devices like the Copper-T, or Mirena, are little metal or plastic objects that are inserted into the uterus, with a trailing piece of string that dangles out of the uterus. The device itself prevents either ovulation or implantation of the embryo, depending on the IUCD in question. The little piece of string is designed to allow the device to be removed easily in a doctor’s office, where a doctor can tug on the string with a pair of forceps and remove the device. 

In China, the IUCD device is inserted without a string, making it deliberately more difficult for people to remove, even with proper medical equipment. 

As a result, many of my patients, after decades of wearing the IUCD, found that the device could not be easily removed. Canadian-trained gynaecologists, used to the simplicity of tugging on a piece of string and changing the IUCD every four or five years as per the manufacturer’s instructions, couldn’t always remove the Chinese IUCDs. Sometimes, it was because the Canadian-trained gynaecologists didn’t have the practice grabbing IUCD’s without the string. At other times, it was because the device had been put in place so long ago that it had shifted position and could no longer easily be removed. Some of my patients had to go under general anesthesia to have the device removed. Others got on airplanes and flew back to China to get the device removed there by the experts. All of this, I gradually realized, was part of the long-term consequences driven by China’s One-Child Policy. 

For a more detailed discussion of the One-Child Policy, see Barbara Demick’s Daughters of the Bamboo Grove. Demick, an L.A. Times journalist, chronicles her two-decade odyssey to help reunite an American-raised Chinese adoptee named Esther with her birth family in China. Esther was abducted as a two-year-old and then trafficked to an orphanage during China’s international adoption industry heyday in the early 1990s. As it turns out, she has a twin sister, Shuangjie, who stayed with her birth family and the story provides a fascinating case study of the entire issue of women’s reproductive rights and the issue of international adoption. 

In the book, Demick lays out China’s One-Child Policy and its ramifications on the grassroots level, where neighbourhoods were policed by local government family planning offices. These units were akin to local mafioso-like organizations, gangs of thugs who were given carte blanche by the local governments to cajole, threaten, and beat people into towing the party line. And, to top it off, they weren’t above kidnapping the children who violated the government’s restrictions on family planning. 

When it comes to the One-Child Policy, there is a tendency for us as Westerners to discuss it as tomfoolery–a straightforward story of failed macro-economic policy, that the One-Child Policy was short-sighted and hastened China’s likely imminent economic decline. And while this narrative may be accurate, it only scratches the surface. The reality of what happened to people on a personal level is much more complicated. 

As Demick describes it, in the nineties, the One-Child Policy essentially created the market conditions for international adoption and the trafficking of kidnapped children. It isn’t a huge leap of logic to understand that the One-Child Policy begets well-meaning people from the West wanting to adopt babies from China and being willing to pay good money to do so. Once money is involved, human traffickers realize that if they can get good money for babies, then all they need to do is to get more and more babies. Now, cue the kidnappings and forced baby abductions and we get to where we were. It’s a frightening cycle, which only illustrates yet again how economic policy can trickle down to the level of the individual in thousand-fold ways. 

There’s another aspect to Chinese family planning worth pointing out here, which is the desire to have more male children. The Chinese culture is by no means alone in this. Historically, many groups around the world prized boys over girls. In China, the reasons for this have long been established. Traditionally, Chinese culture has long placed an emphasis on families having male heirs. According to Chinese culture, family lineages pass through sons, and daughters are raised but then handed over to other families when they marry, unable to continue lineages of their own. At its most basic level, this meant that your son could look after you in your old age but your daughter couldn’t. 

Growing up as an immigrant in Canada, I accepted that the preference for boys over girls was probably one of those older, primitive world views that Chinese people held in the past, but, like binding women’s feet, surely not something anyone still believed in modern times. After all, I had grown up in a North America where women voted, moms were entering the work force en masse, and dual-income households were becoming more and more the norm. I took it for granted that modern people everywhere would value boys and girls equally. 

And while I had read in books about the gender imbalance in China, about how the One-Child Policy had created a nation with a surplus of boys over girls, I took it as just another example of primitive, traditional Chinese thinking, something from the old world, not something that I would have to deal with directly as a doctor in Canada. 

So imagine my surprise, when in my early years of practice, patients started approaching me, forcing me to confront some of these gender issues head on. 

One patient, an older woman who was already the mother of multiple girls, discovered that she was pregnant again. At the eighteen-to-twenty-week ultrasound, to her disappointment, she discovered that she was having a girl, again. A few weeks later, despondent, she came to my office, asking for a referral for an abortion. She explained to me that she wasn’t primitive or old-fashioned. Indeed, she wasn’t against having girls per say. But she already had so many that it seemed fair that she really didn’t want another one. 

By this point in the pregnancy, she was already precariously close to the twenty-four-week cutoff for late term abortions. In Canada, abortions past twenty-four weeks aren’t allowed. Would it be possible for me to change her estimated date of confinement to so that she could squeeze in just within the 24 week window?^⁠2 I refused to do this, and she ended up returning to the clinic multiple times in the next several weeks, each time suggesting that, telling us in fact, that she had remembered her last menstrual period date wrong. And that if we used her revised calculation, her current pregnancy actually fit in the twenty-four-week window. Needless to say, I did not acquiesce and eventually this patient drifted out of my practice. I never did find out what happened to her and her family of girls. 

Fortunately, not all the stories are so odd. Some patients from China have told me that they were pleasantly surprised to discover that in Canada, at the eighteen-week ultrasound, doctors could reveal the gender of their future children to them if they wished. Finally, they could prepare for the upcoming birth of their child knowing what colour to paint the child’s bedroom and what colour clothes to buy in advance. In China, I was told, this information was kept strictly confidential because the government was afraid that people would go looking for abortions if they found they were pregnant with a girl. 

Of course, now the situation in China is flipped. After decades of the One-Child Policy, China suddenly finds itself facing an economic slowdown, the prospect of an aging population and a more educated working class that wants no part of having more children. More and more young people in China are choosing not to even marry, not to mention start families. 

In a twist of dramatic irony, those same family planning units that harassed women for decades into having less children, have suddenly been tasked with the job of encouraging increased reproductive rates. 

What will the Chinese government do when it’s time to raise its low birth rate? What will it do when it realizes it can’t convince its citizens to get pregnant more readily by offering tax incentives? After all I’ve seen and experienced, it’s something I don’t even want to think about but could be just around the corner. 

I’ve long struggled to understand this concept of just how powerful the Chinese government is and how much impact it is able to have on its citizenry. Because my grandparents fled China after the Civil War in 1949 and my parents grew up in Taiwan under martial law, I’ve always had a bird’s-eye view of how Chinese politics can affect the lives of everyday people. I have an aunt who I’ve never met because she didn’t make it out of China in 1949 and became separated from our family–she wouldn’t see my father, her brother, for almost forty years. In recent years, I’ve read countless books about government reforms in China. I saw how China handled Covid-19 in the news. I’ve visited China and seen the gleaming new buildings and multi-lane superhighways humming with electric vehicles. But none of it has spoken to me as loudly as this collective shrug of indifference that I’ve encountered from my patients when it comes to women’s reproductive rights. 

Sometimes, I wonder what the psychic toll of a person doing something they don’t really want to do might be. What if they’re forced to get a tattoo that they don’t want? Or forced to cut their hair in a certain way? 

What if they’re forced into a marriage they don’t want? Or forced to have a baby they don’t want? Or forced to give the baby away against their will? 

They don’t even have the option of agreeing to any of these things. What if these actions are just done to them whether they like it or not? 

But then what about this: what is the psychic toll if they’re to wear an IUCD for the next thirty years, whether they would like to or not? 

What’s the toll if they’re given intravaginal misoprostol so that their baby can be born on an auspicious day? 

What’s the toll if they’re given intravaginal misoprostol so that an obstetrician can deliver the baby on a day convenient for him? 

If all of these decisions are simply made for a person by an aggressive husband, we’d call it abuse and everyone would be screaming bloody murder. But if these decisions are decreed by an even higher authority, an all-powerful political party or an all-seeing authoritarian government, then what? Would everyone just accept it as just another cultural fact of life, like using chopsticks instead of a fork? It seems like they would. 

To hear further discussion about Barbara Demick’s Daughters of the Bamboo Grove, have a listen to my discussion about it on Apollo On Call, the podcast of medhum.org. 

1. In Canada, health care is publicly funded but doctors can charge fees for services not covered by the public health care system. This can take the form of administrative fees as well as fees for certain medical and surgical procedures that the government health insurance doesn’t cover. 
2. The estimated date of confinement is the projected due date for a pregnant mother. It can be calculated as 40 weeks from the date of the pregnant woman’s last menstrual period, or estimated using prenatal ultrasounds. 

Web Image by Medhum.org and Fred Moon 

Additional Chapters from A Chinese City Doctor’s Notebook

When Your Body Isn’t Yours 

01.12.26 787

From Tigers to Otaku

09.16.25 1659

The Happiest Couple

07.28.25 1401

The Things We Don’t Talk About When We Talk About Dying 

05.13.25 1979

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: 

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. 

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

Additional Chapters from A Chinese City Doctor’s Notebook

When Your Body Isn’t Yours 

01.12.26 787

From Tigers to Otaku

09.16.25 1659

The Happiest Couple

07.28.25 1401

The Things We Don’t Talk About When We Talk About Dying 

05.13.25 1979

One Patient, Two Systems 

02.24.25 2665

In Dangerous Medicine: the Story behind Human Experiments with Hepatitis, Sidney A. Halpern tells the story of America’s decades-long investment in hepatitis inoculation experiments, of which the infamous Willowbrook study was only the final and perhaps most egregious example. The experiments began in 1943 in response to an epidemic of “serum” hepatitis among military draftees who had received yellow fever vaccine. The initial idea was to characterize the infectious agent that caused the disease and to examine its clinical features under controlled conditions. In later years, studies involved testing various preventive measures, both for serum (B) and infectious (A) hepatitis.  

During World War II, the Armed Forces Epidemiology Board (AFEB) initiated a series of inoculation studies among conscientious objectors, prisoners, and mental patients. Most of the subjects were conscientious objectors who volunteered, despite having a wide variety of service options. “Virtually all the men serving as hepatitis subjects spoke of a desire to engage in meaningful and consequential humanitarian service.” (p. 63) Investigators told the volunteers, “It is our judgment that the possibility of permanent or even protracted or severe impairment of liver function following participation in the jaundice experiment is very slight.” (p. 48) At that time, of course, long-term consequences of hepatitis B infection—chronic infection, cirrhosis, and hepatocellular carcinoma—were unknown. However, many of the subjects did develop clinical disease and at least one subject developed fulminant liver failure and died.  

After the war, hepatitis researchers relied almost exclusively on institutionalized subjects. For example, Joseph Stokes Jr. of the AFEB “not only drew subjects from a mental hospital and multiple institutions for children, but he also enlisted inmates from five state correctional facilities… in New Jersey.” (p. 101) Stokes claimed the research was “beneficial for both the facility and its residents.” (p. 96) Later, researchers at Johns Hopkins, Yale, and the NIH conducted studies at other institutions. For prisoners, participation offered multiple benefits, including the possibility of early release. Among the objectives of studies during the 1950s were attempts to eradicate the infectious agent by sterilizing the infected serum, which were unsuccessful. During these studies, four subjects died of fulminant hepatitis, two at McNeil Island Penitentiary in Washington and two at Lewisburg Penitentiary in Pennsylvania.  

Willowbrook was one of two long-term hepatitis inoculation programs begun in 1956. At the time, Willowbrook State Hospital on Staten Island had one of the largest populations of the cognitively impaired in the USA. It was the overcrowded home to some of the state’s most disabled patients – 39% were non-ambulatory, and 64% unable to feed themselves. A New York University team, later headed by Saul Krugman, professor of pediatrics, established a hepatitis unit which each year admitted approximately forty-eight children between three and ten years of age. Many of the experiments involved injecting subjects with serum containing live infectious (A) or serum (B) hepatitis virus. Major study findings included clearly distinguishing between the natural history and characteristics of hepatitis A and B, and discovering that gamma globulin was an effective means of preventing clinical illness in hepatitis A. 

This decades-long sequence of inoculation studies occurred despite post-war developments in research ethics. The Nuremberg Code was promulgated in 1947, followed in 1964 by the Helsinki Declaration. These documents established principles designed to protect the rights and welfare of research subjects, including respect for individuals, voluntary participation, informed consent, risk/benefit analysis, confidentiality, and scientific integrity. However, at least in the United States, hepatitis investigators, among others (e.g. Tuskegee syphilis study), ignored or evaded these principles.

Except for wartime experiments on conscientious objectors, hepatitis inoculation studies violated almost every ethical principle set forth in the Nuremberg Code and Helsinki Declaration. The vast majority were conducted in closed institutions among subjects who either lacked the ability to consent, or whose participation was not necessarily voluntary (i.e. prisoners). Where consent was obtained (e.g., from a prisoner or surrogate), the investigators provided incomplete or false information (e.g. stating that risk was minimal), despite several deaths from fulminant liver failure. Yet, Joseph Stokes claimed that virus inoculation could “in our opinion be of benefit to the individual himself.” (p. 98) In addition, coercive tactics were used (e.g., quicker admission to an institution, or earlier release from prison).  

Dangerous Medicine highlights unethical practices in American hepatitis research throughout the mid-20^th century. While contemporary ethical standards had yet to be established, broad ethical principles articulated by the Nuremberg Code and Helsinki Declaration and reiterated (at least, in part) by the American Medical Association, were ignored. Public outcry in 1972 against Willowbrook, Tuskegee and other unethical research led in 1974 to the establishment of the National Commission for Protection of Human Subjects of Biomedical and Behavioral Research and, subsequently, to the Belmont Report, the Common Rule, Institutional Review Boards, and contemporary standards in human subjects research. Interestingly, as far as Dr. Halperin is aware, no follow-up studies have ever been done to ascertain the long-term health consequences of these hepatitis study subjects.  

Dangerous Medicine tells a sobering story, well-worth reading. And, given the prevalence of academic incentives and multiple conflicts of interest, I’m afraid the story of unethical research is far from over 

1. Beecher HK. The Ethics of Clinical Research. New England Journal of Medicine. 1966; 274: 1354-1360. 

Dangerous Medicine: The Story behind Human Experiments with Hepatitis
Sydney A. Halpern
Yale University Press, 2021
304 pages 

Web image of Hepatitis B from Wiki Commons