On the NYT article "The Cancer of Optimism"

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5/8/2013 10:12pm
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Dear Friends,

This past Sunday, May 5, 2013, an article appeared in the Review section of the New York Times written by a resident in internal medicine.. 

http://www.nytimes.com/2013/05/05/opinion/sunday/the-cancer-of-optimism.html?pagewanted=all&_r=0 

The title is "The Cancer of Optimism."  I was horrified and very agitated by the opinions expressed.  These ideas have repeatedly been espoused by other author/doctors in several other articles during the past couple of years.  I am very concerned that they will come into the mainstream.  If they do they will harm the efforts we are trying to encourage in a forum such as this.  We are taking upon ourselves the responsibility to find out as much as possible about our disease, then make our own choices about courses of action.  We all are also fueled by hope, hope that the medical predictions might be wrong, that we might secure for ourselves a few more days or weeks of life, and that by sharing our knowledge and by serving in clinical trials we may be of help to others

The article assumes that the patient knows only what the doctor tells him, and that it is up to the doctor to direct the patient into a course of action or non-action.  It considers hope on the part of the patient in the face of a terminal disease to be a detriment, not to be encouraged, and it makes no mention whatsoever of clinical trials.

This is the letter I wrote to Dr. Warriach:

 

Dr. Warriach, to give you the benefit of the doubt, I don't think you know how much this article is insidiously demeaning to patients.

 You assume that physicians have a lock on "the truth," that only they are privy to medical information pertinent to the patient.  Thankfully patients have found the key, in the form of the internet, which not only allows them to verify the doctor's "truth," but to learn many other truths that the doctor has failed to convey.  The medical world no longer is able to keep secrets from patients, nor should they.

 The doctor's obligation is not only to convey the situation as knowledgeably as he can, but to share all the options available, along with their risks and benefits.  It is not his job to choose a course of action for the patient, or to impose his values upon the patient's choice.  You apparently assume that what course to take is the physician's choice; it is most certainly the patient's choice.  What an arrogant assumption.

 I find it strange that nowhere in the article is the concept of clinical trials.  These represent both hope for the patient, as well as an opportunity for him to make a contribution to knowledge, to give something to those who go after him, offering him a sense of usefulness, rather than completely focusing on himself. 

 This common omission of suggesting the option of clinical trials to patients is astounding in light of the desperation of researchers to find patients for their trials.

Hope can and does co-exist with knowledge of the "truth," one involves the intellect, the other emotions.  A person can know the sad scientific truth of his prognosis, and also have hope that it may not be accurate.  To extinguish that flicker of hope is cruel.  It is that very hope that may give the patient the wherewithal to live until his grandson's bar mitzvah

Though I am considered terminal, I have survived 10 years past a 6-month prognosis by having hope that enabled me to join many clinical trials.  Despite the fact that my prognosis sticks to me, and most certainly always will, I feel well and am looking forward to my grandson's bar-mitzvah in a few months.

Thank you for taking the time to listen,

Esther Damaser, Ph.D.

Yellow Springs, OH

Hi Esther,

Thank you for posting your reply to the author.  I read this article the other day and was disheartened by the tone it took.  Without hope, what do we have?  As always, your reply was right on the mark.  Thank you.

Would love to know, if the author replies to you.

Hugs,

Anne Marie

Anonymous - (5/9/2013 - 5:57pm)

Comments were closed there or I would have posted there...your letter was wonderful! 

Physicians - "studies show that they are just as capable of emotions as their patients are."  And this is a surprise why...because we patients are supposed to think of them as Gods and not simple human beings like the rest of us?

What an arrogant article.  I met a doctor like this once...one who thought he held the key to life or death his well-educated hands.  He read my father's brain scan and said "for all intents and purposes, he's brain dead.  There is no point in continuing medical intervention, just let nature take it's course."  We fired him.  We got a new neurologist who looked at the exact same brain scan and said "I don't know.  Things like this are not black and white.  Sometimes...we have to just go with our gutt and see what happens." 

We continued medical intervention and my Dad came out of his coma, went on to live for years in a nice apartment at an assisted living facility. Oh and mentally...100%!!  He was as intelligent as before the illness, had all his long term memory - the only thing he had no memory of was the time in the hospital - and his short-term memory was actually better than my sister and I mid-menopause!!  During those many months with my Dad in the hospital after the coma and during the long recovery, I learned one thing - a LOT of the practice of medicine is guesswork.  Educated guesses.  And just that...a practice.  Not always perfect, but always a learning experience.  That is...unless the doctor thinks he is a God who holds the balance of live and death in his/her hands.

As for doctors who "endorse treatments that most likely won’t save patients’ lives, but may cause them unnecessary suffering and inch their families toward medical bankruptcy" - well that is why every person should have a living will.  And if they choose to spend THEIR money on treatments that don't work...blame the pharmaceutical industry not the patients for believing in their marketing!  Stop teaching things to doctors in Medical School that won't work...why blame the patient? People spend money on fast cars, cigarettes, houses far larger than anyone needs - why does the medical profession feel they get to judge just how far a family will go to live?  If something does not work...then tell the FDA to disallow it instead of allowing doctors and hospitals to get rich from it.

After my Father was in his apartment I had a conversation with him.  I said "Daddy, you had a living will and there were times while you were in the coma that we really did come right up to the line as far as how much was too much.  I know you wish you were still at home and not living in this apartment, but did we do the right thing?"  "HELL YES! I'm glad to be alive!" he replied!

Another doctor who is self-righteous about not offering his patients "false hope". Just what we need. I've had oncologists who were ready to hand me a death sentence, and I haven't even had mets yet.

David Servan-Schreiber calls this attitude "false hopelessness".

Friends,

Thank you for your kind comments about my letter.  The author did respond, but seems to have missed the point (or points).  He couches the problem as one of medicine's achieving better, more accurate prognoses, which, of course, will never happen because we are all different.  His letter was pleasant in the face of my criticism.  We must remember that he is young (a resident), and so might be forgiven.

But the picture is larger than one resident.  The "false hope," or "false optimism," idea keeps appearing in assorted editorial writing from the medical world.  It worries me that it may be a cultural trend.  Stay alert and respond when you see it.

Joel, thanks for the term "false hopelessness," I love it.

OK, now I'll step down from my soapbox.

Esther

Well said, Esther.

I'll make sure to also react on this doctor's article.

Unfortunately his is the attitude of the majority of doctors.

We're a mere nuisance to them and with socialized medicine it will get worse, because they will not be held accountable at all anymore by us. At least we will have zero impact on them getting paid or hired.

Legally most oncologists are already 'untouchable' now. No wonder this kind of attitude.

I'm grateful there are forums where we can show this kind of attitude, so it does not go unnoticed.

 

Peter L in Leiden, Netherlands (formerly in Windham, NH)

Hi Peter,

Though I am a pretty cynical person, I do not share your cynicism about "socialized medicine," (which the US does not have, even with Obamacare, or ever will have).  Is Medicare "socialized medicine?"  One could argue it is at least an iteration of it.  Throughout my 10 1/2 years of struggling with this ugly disease, I have had numerous cutting edge treatments, and more numerous, expensive scans.  Medicare has never refused me a single thing.

I have complete choice of docs (except those who won't accept Medicare, and they are few), besides which I only need to go to the big cancer centers (where the best researcher/docs are), and they all accept Medicare.

Since "socialized medicine" will undoubtedly benefit more people than "unsocialized medicine," I'm all for it.

Stay as well as you can,

Esther

Esther, the US has had socialized medicine for decades, just not universal yet until now.

I stick to facts not cynicism.

Here is what Medicare really means for patients. Read and shudder. We should not have to fear for our care being rationed, but that is what happens like in this example of Medicare anno 2013

http://www.washingtonpost.com/blogs/wonkblog/wp/2013/04/03/cancer-clinic...

Id docs, clinics, insurers,drug companies and patients were not enslaved it would not happen.

Peter L

Anonymous - (6/5/2013 - 10:41am)

Thank you Esther, for sharing a story about your actual experience with Medicare.  I agree 100% - ObamaCare will benefit more people than what we have had in the past and I am all for it. Our family had the same experience with Medicare in caring for our parents and in-laws - no one was ever denied anything and the costs were affordable, instead of resulting in our elderly relatives having to sell their homes to pay their bills!  It's important to listed to people like you who have real-life experiences with this and to put the opinions of people who just read articles about it, into perspective. And of course I have to wonder...if this country is so full of fault and poor solutions to peoples medical care - how come the previous writer keeps coming back here for treatment?  

I guess the anonymous author of the previous comment has no courage to identify herself, but I will answer teh insinuation of double standards. The truth is that socialized medicine is now everywhere, so one has no choice anymore. One just tries to navigate amongst the lesser of two evils in the global health options. Every few months it becomes hearder though. A few months ago I discovered that in Massachusetts most commercial imaging centers are now so heavily rergul;ated, that I can't get a lung CT scan at them anymore (as oppose dto last year) and the MRI procedures have become much more bureaucratic and slow to arrange compared with a year ago, again thanks to the new laws. It also meant that I had to do unnecessarily more expensice scans than the year before.