Yes

by Maryam Lebeau

Created on: November 18, 2011   Last Updated: January 23, 2012

Upon first glance, a gut response is: “Of course, it is never ever ethical for a doctor to withhold information from a patient.  Honesty is the best policy.”  However, looking at this issue in terms of a concrete example leads to a different conclusion:  Under some circumstances, it is ethical and appropriate for a doctor to withhold information from a patient.

My mother’s occupation was not in medicine, but her early adulthood in the 1960s was spent surrounded by friends and family who were physicians of numerous specialties.  During those years, starting at age 23, she experienced seemingly bizarre and unrelated symptoms. 

One day she woke up and could not move her legs; they were numb.  This continued for a few weeks, and she used crutches to get around until it spontaneously resolved; this happened again and again, with much time in between episodes.  She also had intermittent tingling in her arms.  On numerous occasions, she had partial blindness and pain in one eye.  With each new symptom, she saw a doctor; each time, she was given a non-worrisome diagnosis.

Because these symptoms were intermittent and spanned the course of nearly a decade, neither she nor her personal physicians put them together or had reason to suspect a systemic illness.  However, she had a friend who was a young neurologist, who later became a well-respected department chairman of a major medical center.  My mother remembers him as being quick-witted, meticulous, and a genius; he was the smartest person she ever knew.

This neurologist examined her, and became her go-to person for medical problems.  He knew something she didn’t.  Without any laboratory tests – but with his knowledge, experience, and genius – he knew she had multiple sclerosis (MS).  He kept this information to himself due to his affection and friendship with her.

In the 1960s, diagnosing MS was an inexact science without any confirmatory tests.  Most people who were correctly diagnosed with MS had the most severe, incapacitating symptoms.  Because the public saw only those most disabled patients, the disease appeared to be much worse than it actually was.  To add injury to insult, there was no treatment or cure for the disease.  At that time, a diagnosis of MS was feared like a death sentence.

By the mid-1980s, the MRI had been developed and became the gold standard for diagnosing MS.  At this time, my mother had started college as an adult student, working part time and going to school part time, while raising a family.   She still had intermittent symptoms and also developed an awkward gait, now known as a foot drop.  She became fatigued easily, and her legs often burned.  Nevertheless, through the course of over a decade and despite medical setbacks, she completed college and received her degree.  She was the first member of her family to become a college graduate.  Her disease progressed, at times rapidly.  She was only able to work in her chosen career for a few years before she was forced to retire due to disability.

Had she known that she had MS at the age of 23, would that have benefited her?  We all strive for honesty and disclosure in our lives, mostly because we have been ingrained with the concept that it is the “right” thing to do.  However, in this case, would the ideals of “honesty” and “disclosure” have really benefited her?  I say no.

In numerous conversations with my mother, she has told me that she probably would not have had children, had she known at age 23 that she had MS; pregnancy is known to exacerbate and accelerate the disease.  She also probably would not have pursued college; thus, she would not have the pride of becoming a college graduate, let alone being the first college graduate in her family.  She would have instead opted to spend that time with her family – due to her “death sentence.”

I grew up watching my mother work part time, go to school part time, raise a family, pack my lunches, take me to piano lessons and sports events, and do as many “mom” things as she could, given her condition.  She persevered, again and again and again. Although she has never directly said so, I know she was proud of her accomplishments.  However, before her MS diagnosis, she had no idea exactly how proud she should have been; she had no idea that she was doing all these things, all-the-while having MS.  

When I look at my mother, I see a woman of incredible strength.  She lived with bizarre and incapacitating symptoms, never knowing how long they would last, when they would go away, and or they would show up again.  Every day, she showed me what perseverance looks like – it means getting out of bed, taking care of yourself and your family, and meeting your obligations the best that you can.  She devoted herself to her goals and family, rather than being held back by her physical limitations.  She never, ever complained.  Even though she never had the career she had intended, she taught me the value of an education, in and of itself.    

While MS still does not have a cure, medicine has numerous treatments (with different levels of success) for the disease; MS is no longer a death sentence. By the time of her MS diagnosis in the 1980s, my mother’s condition had advanced somewhat but was not considered severe. She had achieved her long-term goal of a college degree; however, upon her diagnosis, she found little reason to establish other goals and causes for herself.  She let herself be defined by the disease.  She complained.  Her condition deteriorated rapidly.

My mother’s neurologist friend passed away a few years ago; she believes medicine lost not only a great doctor, but also a great man.  This was when she told me that, in conversations in the 1990s, he told her he knew – way back when – that she had MS.  She is forever grateful that he withheld this information from her, and she respects and appreciates his decision.  

The neurologist didn’t tell her then because he didn’t want to scare her.  MS had no treatment at that time, and there was no cure.  He felt no need to scare her with a MS “death sentence” diagnosis, when her symptoms were her symptoms; nothing could be done about them.  He felt that the diagnosis would cause her to take a different path in her life, preventing her from living life to its fullest.  He was right.

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