A serial murderer is roaming about the town, searching every nook and cranny for the next intended victim on his target list. He knocks on your door, asking if you have seen the man. Unbeknownst to him, the person he has been searching high and low for is indeed in your house, hiding himself up in the attic after telling you about his situation. Now, you can choose to remain silent when you open the door but that would be the same as giving the murderer an affirmative reply. You can also refuse to answer the door or stall for time to call the police but both options heighten the risk of the murderer barging in to hunt for the man. Do you commit the cardinal sin of lying or do you effectively give up the man’s life in this version of a classic philosophical paradox?
In the context of medicine, the potential victim is a patient and the murderer is his inner demon. Doctors and his family make up the moral agents at the door. In the West, even though medical interventions are governed by the doctrine of consent, physicians are, to some extent, legally allowed to practice professional discretion in sharing knowledge related to the therapy with their patients (i.e. therapeutic privilege). Courts have held that physicians may be entitled to withhold information that will deter patients from undergoing treatment, depending on factors like psychological considerations, health threats necessitating the treatments and opinions of responsible bodies of medical men. In Muslim and Confucian cultures, physicians and families frequently collude to conceal fatal diagnoses from patients, out of fear that the news would drive the patients to suicide or cast a pall on their remaining days. Some may think that withholding of information does not constitute lying, but there is a difference between withholding information irrelevant to a person like the number of disease sufferers nationwide and withholding of crucial facts which exclusion will foster misconception of matters (e.g. a terminally ill person may regard the absence of bad news as transmission of good news) and influence his decision (the underinformed patient may live like he has decades more to go). The latter is known as lying by omission. Besides, family members may sometimes reinforce the misconception by putting on cheerful dispositions masking their actual feelings and reassuring patients that everything is fine.
There is perhaps less of a dilemma when patients in these cultures actually expect and want to be deceived. After all, people in such collectivist societies subscribe to the concept of family-based autonomy, under which the family makes decisions as a unit and takes responsibility for infirm members. Having grown up exposed to such customs and, perhaps, deceived terminally ill family members themselves in the past, many reasonable patients would have anticipated that they would not know about their own fatal diagnoses. Furthermore, in some cases, the fatal conditions would produce symptoms so severe that the the information disclosed to them could not be the complete truth. Capacitous people who do not press for the truth in spite of this state of affairs most likely do not want the real diagnoses. This is even clearer when a patient has explicitly stated in the past that he prefers to live in ignorant bliss if he ever finds himself in such a situation. In this scenario, truth-telling would violate the right not to know. Moreover, lying to a person who wishes to be lied to and deliberately acts indifferent to reality is probably more reminiscent of storytelling than true deception.
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Obviously, though, significant doubt as to whether individuals in these cultures are relinquishing their right to the truth remains in various circumstances. Some patients may be of such an unsuspecting nature and/or experience symptoms as yet minor enough that they wholeheartedly believe the lies served to them. Furthermore, many people do not bother to discuss how they would like to be treated in adverse situations until they actually find themselves in those situations, making it difficult for others to know whether they feel entitled to a right not to know before revealing the truth. On top of these factors, Western-style individualism has been creeping into various collectivist societies over the past decades, such that family-based decision-making cannot be regarded as the default ethical option for everyone (even though it may have remained the legal or practical norm). Under these conditions, the concealment of medical conditions can seriously compromise personal autonomy, robbing affected patients of opportunities to fulfill remaining dreams in time and to discuss funeral options, assets distribution and care-taking arrangements for their dependents.
The consequences can be just as disturbing, if not more, for patients who do sense that they are being deceived but remain denied the truth. While these patients can exercise some autonomy by making choices under the assumption that they are indeed dying (e.g. preparing a will early), they have to live with the uncertainty of whether and when their lives will end. The fear and anxiety generated under this kind of uncertainty may, in fact, be comparable to the emotional harm merciful lies are supposed to shield patients from. Delivery of the true news can, at least, provide them with closure.
Lies about fatal diagnoses can also perpetuate uncertainty on a macro scale. Telling one lie makes it easier to tell other lies, so much so that the practice of deceit can spread subtly throughout the medical culture. Yet, as with merciful lies in the context of dying, lies in general are not always easy to sustain. Journalism-themed drama Pinocchio employed a simile to describe the nature of truths. In its view, truths that are being hidden are like calm water collecting behind a rock wall. The water gradually seeps through tiny cracks in the seemingly impervious wall, and these cracks expand until the dam bursts one day. It is likely that a widespread practice of deceit in medicine would eventually break out into scandals, which erode public trust in medical institutions. Unable to tell truths from lies, even patients who are not terminally ill may start to doubt the medical opinions they are given, creating a strain on the doctor-patient relationship. The decreased rapport between physicians and patients may, in turn, reduce patient cooperation, posing challenges to public health management.
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What Pinocchio also offered was a glimpse into how to soften the impact of truths. In the story, an old man saved a boy at sea and thought that he was a son he lost at sea 30 years ago. Every time someone managed to convince him otherwise, the old man suffered a breakdown and fainted. Hence, his family had no choice but to play along with him, while the youngster kept his hair shaggy, dressed himself in old-fashioned clothes and scored zeroes for all his exams in an exaggerated effort to maintain his resemblance to the dead son. After spending a year together, however, the old man came to realize that the two were different individuals but develop affection for the boy all the same. For reasons discussed above, this example should not be taken to mean that dying patients should simply be left to figure out the truth by themselves, but it does suggest that a gradual, indirect exposure to reality produces less emotional damage than outright confrontation to the entire truth all at once. As celebrated poet Emily Dickinson remarked,
“Tell all the truth but tell it slant —[…]As Lightning to the Children easedWith explanation kindThe Truth must dazzle graduallyOr every man be blind —”
When applied to the problem of disclosing fatal diagnoses to vulnerable patients, this may imply: (1) pointing out the silver lining in such situations (e.g. how the imminent end of life frees people from social considerations preventing them from chasing their dreams) beforehand, (2) arranging for a close pastor or other religious leader to provide a comforting perspective on life and death matters in advance if the particular patient is a religious person and having family members attend the session together, (3) reassuring patients that they have one’s shoulder to lean on in all circumstances and that, in sickness and in health, every minute of our existence is precious, (4) giving patients gentle warning that one is about to break bad news, and finally (5) revealing the news chunk by chunk with ample time for patients to cope with the emotional load of each chunk. The appropriate details of the strategy may differ depending on how patients react to each step, their personalities, urgency of the cases, etc. Nevertheless, even patients who are not visibly vulnerable can benefit from a quick delivery of steps (1), (3) and (4).
An oblique approach to truth-telling may strike some people as paternalistic or underhanded as it changes perceptions in a subtle, perhaps unnoticeable manner, under which individuals have less opportunity to defend their original mindsets. This argument may be pertinent when the issue is not “truth-telling” per se but the conversion of people to a school of thought or a particular opinion, whether the thought or opinion is valid or not. In that case, non-obvious mental influences may erode the personal right to mental autonomy. In the context of fatal diagnoses and patients retaining their right to the truth, however, the final information conveyed are established facts they desire to know in the first place. Even when it is unclear whether patients prefer disclosure or not, the psychological defense provoked by direct delivery of diagnoses (i.e. denial of impending death) would have been unlikely to last till they draw their last breath, since the deterioration of their bodily conditions often eventually supports the diagnoses.
In sum, lying should generally be the last resort in medical practice. While terminally ill patients deserve humane and compassionate treatment, mercy can guide the relaying of facts rather than lies. In other words, the aim of palliative care ought to be “merciful truths.” And truths, as the boy who lived a lie in Pinocchio acknowledged, are ten times more comforting than lies constructed for the same purpose.
The A-Philosopher's Chair 
Special thanks to Michelle Marie
for her expression of support in the prelude to this post.
When my mother was diagnosed with terminal cancer at the age of 48, the doctors told my father she had six weeks to live. My father then answered my mother’s questions truthfully. It gave her time to prepare her ten children between the ages of 6 and 20 and my father for her death. We have been profoundly grateful all our lives.
409 years later when my sister was diagnosed with cancer, she told the doctor what and when she wanted him to tell her. Then one day she said to him “This may be a difficult conversation for both of us. But I want to know the whole truth now: how much longer?”
As your insightful piece illustrates, sometimes we need to learn the truth gradually. But sometimes courage requires that we take the full blast of truth in one blow. Though, in truth, I think my mother was not utterly surprised.
Thank you for this post.
Thank you for sharing your family’s experiences. I hope your mother is now in a better place. As this article illustrates, there are, conversely, some people who do not want to hear the truth regardless of the costs: http://blog.practicalethics.ox.ac.uk/2014/04/terminal-illness-and-the-right-not-to-know/ . These diverse considerations probably suggest that medical paternalism should be balanced with some faith in patients’ mental strength, on the one hand, and respect for the type of autonomy they desire, on the other.
Perhaps, the best way to uphold the right to know, in all its variants, and the right not to know at the same time is to set up an advance directive system like the one in place for rejection of life-sustaining treatment in various parts of the world. Then again, many people are reluctant to ponder about such morbid topics early on in their lives, which has limited the uptake of such directives. Also, the inability to foresee all types of disease conditions (or psychological conditions in the case of disclosure) can readily threaten the validity of directives. Medical ethics is seemingly a never-ending quest for moral truths that apply to everyone.
Yes, I agree this is a topic with constantly shifting parameters. I began to appreciate just how difficult a position a doctor may be in when my sister became ill. She wanted the truth, but she wanted it on her terms. Fortunately, her oncologist was quite extraordinary himself and was able to walk each step with her at her pace.
Insofar as it is possible, several of us in my family who are currently in good health have had explicit discussions with our main doctors about what we want and asked explicitly if they can accept it. One doctor said no, and my brother has subsequently changed doctors.
There aren’t, of course, any fail-safe strategies. But some options are apt to succeed than others.
Thank you again for bringing this subject to the fore.
Society cannot be perfect, but it must strive for perfection.
Your focus on the individual is refreshing and probably an important wake-up call to the scholarly discipline of medical ethics, which, owing to the target audience of its discourse, concentrates more on the moral behavior of medical practitioners and health administrators than that of patients. It is perhaps time that ethicists engage patients in their discussions as well.
This brings to mind the Confucian ideal of role division. In the same vein, one can argue that an individual has the responsibility to emulate your family by mustering up the courage to think about taboo issues and making his choices clear to each medical establishment he visits. Policymakers, meanwhile, do well to encourage exploration of those issues and facilitate systematic recording of advance wishes. Physicians, which is where this article is coming from, must respect all reasonable, known wishes of patients, but when faced with imperfect individuals and imperfect systems, they may have no choice but to settle for an approach that is humane not only for the majority of (strong-willed) people but for as large a proportion of the population as possible. In the process, they have to consider the cultural contexts they are working with, which determine the relative acceptability of different reforms. This is where gradual truth-telling, when practiced with measured responsiveness to patients’ wishes and needs, comes in. Critics’ role, lastly, is to keep questioning why and why not.
One role that everyone has in common is not to give up searching for more options to add to the limited toolkit they currently have. This is another reason why debates like this are forever so alluring. 🙂
I agree wholeheartedly. We can only begin to weave successful resolutions if we appreciate that there are two sides which must listen and cooperate. Both the medical professor and the patient have an essential part to contribute. I believe it takes courage on both sides. Again, thank you for starting this.
On the medical side of things, I would want to know if I had a terminal diagnosis. I would want to organize and I would want to attend to my bucket list should I be well enough to do so. But, no matter, we all need the right to our goodbyes and to have the chance to speak or make amends before we go. I’d want the truth. The is not to say that gentle revelation isn’t ok. Depends on if you have time for slow realization or not. With aging members of my family having increasing physical and mental issues, I feel the weight of time or lack thereof. Truth not being as much the issue as getting it on time.
Thanks for a thoughtful and considered analysis.
Thank you for the feedback and apologies for this long-overdue response. Time is indeed one of the factors that would go under the “urgency of cases” criterion mentioned above. For some psychologically fragile patients, though, it may mean a difference of dying within weeks or months in the case of gentle revelation or no revelation, or within days in the case of suicides following abrupt disclosure.
In any case, the article has now been edited to emphasize that the full strategy for gentle revelation, when feasible, is meant for fragile patients whereas a faster approach can be adopted for non-fragile patients.
Please do share your thoughts about future posts as well. The same goes for Terry Sissons!