Patient Notification and Cancer in Russia and the Soviet Union

[Lise Brody]

I had an agonizing experience in the early 80s when I worked as an interpreter for new immigrants at a health center in Boston.  When an older man was diagnosed with lymphoma, my supervisor, a Soviet immigrant, told me to avoid the word "cancer" and simply tell the patient that he had "abnormal cells."  His wife pleaded with me, practically on her knees, not to tell her husband he had cancer.  I still remember her insistence that if he heard that diagnosis, he would give up on life (never mind that lymphoma is slow growing, and he was more likely to die of something else long before it became fatal).  But the American doctor explicitly insisted that I not only tell him, but that I specifically use the word "cancer,"  asking me repeatedly, in the presence of the patient and his wife, if I had done so.  It was horrible for everybody.  That incident threw into relief the cultural differences around medicine at the time.  





On Tuesday, September 23, 2014 3:26 PM, Robert Chandler <kcf19 at DIAL.PIPEX.COM> wrote:
 


Thank you, Stephanie, for helping us all to understand these complex matters.

All the best,

Robert

On 23 Sep 2014, at 19:56, Stephanie Briggs <sdsures at GMAIL.COM> wrote:

> I've watched a documentary on Netflix a few times called "The English Surgeon". It's about Henry Marsh, a British neurosurgeon who travels to Ukraine to operate for free on patients with (often seen as inoperable in Ukraine) brain tumours. His Ukrainian colleague Igor, also a neurosurgeon, runs a free clinic where they can assess patients. Igor hopes to secure funding to one day build a hospital to help all the clinic patients. 
> 
> In contrast to what has been said here, Marsh thinks that, in some cases, offering hope to a terminal patient isn't a bad thing. It truly depends on the patient, the nature of their case, and whether the tumour is malignant or benign. It was heart-wrenching to watch as they had to tell a grandmother that there was nothing he could do for her five-year-old's tumour, because it had progressed too far. Another case was that of a 23-year old woman, whose tumour was definitely inoperable, to the point that they wouldn't tell her so until she could get her mama from Moscow to come back to the clinic with her. They do not want to give such devastating news to a patient when the patient has no family close by. The woman most likely had 2-3 years to live, and she would go blind before that. Operating on her, with what scarce supplies and facilities they had in Ukraine, was just not an option. Marsh did say that were these patients in London, he would operate on
 them all. 
> 
> The good news is that they showed a successful awake surgery on a young man whose big tumour was causing epilepsy. He has had no seizures since the surgery, and can now look for work. 
> 
> Apologies for the long-winded email, but I have a sort of personal stake in the subject: I have had many neurosurgeries myself, since I was a baby, to correct and revise my shunts for hydrocephalus. I'm 33 now. Thankfully, no tumours involved, but I know how terrifying it can be when someone tells you they need to operate on my brain, and yet it is just as terrifying when someone tells you there is nothing more they can do. I've been in both situations. 
> 
> I still have severe chronic migraines, but they are being decently-controlled with medication, and, more recently, Botox. The Botox has been almost like a miracle, although the progress is very slow-going. I'm not well-enough to resume studying Russian, but we hope maybe next year we might be able to start lowering the dosage of my preventative medication (sodium valproate). Being a patient patient, if you'll forgive the bad joke, is not easy. 
> 
> Hope that helps.
> Stephanie
> 
> *****************************
> ~Stephanie D. (Sures) Briggs
> 
> Shorn Lambs: Hand-Knitted Scarves, Afghans, Throws and Baby Blankets 
> http://shornlambs.etsy.com
> 
> My blog: http://stephaniebriggs.co.uk 
> Twitter: @stephbriggsuk
> Facebook: http://www.facebook.com/stephanie.briggs3
> 
> 
> On 23 September 2014 01:24, Brian Hayden <bkhayden1990 at gmail.com> wrote:
> Dear SEELANGers,
> 
> I've heard from a few different sources that in the Soviet Union doctors sometimes (often? almost always?) would not notify the patient if they found cancer. Was this official policy or a professional custom? Did it apply only to cancer, or to other diseases that would likely end up being fatal? What was the exact rationale behind / philosophical underpinning of this move?
> 
> Sincerely,
> 
> Brian Hayden
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Robert Chandler, 42 Milson Road, London, W14 OLD

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