Thursday, June 02, 2011

Doctors Who Write


I can't find it now, but on one of our posts somewhere MovieDoc has stated that doctors can never ethically write about their patients since they are incapable of giving truly informed consent. Besides the obvious "huh?' response I have to the idea that patients aren't capable of making decisions like this, I question the basic assumption that this should never happen.

The medical literature is replete with published anonymized case studies of patients with various maladies. For psychiatry in particular, early psychiatric classification was based on longitudinal descriptions of diseases. If it weren't for the early case descriptions of Kaposi's sarcoma in gay men published in the 1980's, AIDS would not have been identified as a new disease. Case studies can and should be published to advance medical science.

Some medical schools are requiring medical students to write essays about their patient encounters, to build communication and empathy skills and to get them thinking about patients as whole people rather than a single organ system. This is a good thing, and as several commenters on this blog have noted some doctors really need work on this. Patient narratives force doctors to seriously think about personal aspects of medical care, and from a patient perspective they may help people understand how doctors think and what they feel about providing care. Improved mutual understanding and communication is a good thing.

Andrea Crawford wrote a very nice piece about this entitled "For Writers, The Doctor's Definitely In" for the Poets and Writers web site. In this article she lists numerous physicians who have written about their experiences and the unique position physicians have to write about human suffering. Physician memoirs may educate other doctors about work in underserved settings or places: Paul Linde has written two books about his work in Africa and as an emergency room psychiatrist (I'm reading it now, it's good.). Inspiring doctors to provide care to the underserved is a good thing.

So that's at least three or four reasons why medical writing should happen. The real question is, what's the best way to do it?

There seems to be four general mechanisms: completely fictionalized vignettes, as we did in our book; anonymized real cases stripped of identifying details; completely factual cases written with the consent of the patient, as done in the New York Times, or the "literary non-fiction" approach of medical writers like Linde. In the literary non-fiction genre doctors write anonymized case composites based upon actual experiences. The "patient" in these publications are not a specific real person, but are build out of various aspects of real cases.

There are problems and limitations with all these approaches and I don't have a strong opinion about the "best" way to deal with this issue. Factual cases written with patient consent is the ideal, but this is not always possible if the writing is done years after the event when the patient can no longer be located or may be deceased. Fictionalized vignettes are probably the best ethically, but from a reader is then left wondering how much---if any---of the story is real versus written for dramatic effect.

I've done some searching in this area and we Shrinkrappers obsessed quite a bit about it when writing our book, but I haven't seen any guidelines about it anywhere. If I'm missing something, speak up.

52 comments:

The Girl said...

Nothing helpful to add, I just wanted to say that I'm reading your book and thoroughly enjoying it. :)

Anonymous said...

The act of observing causes change. As a patient - knowing I'm being written about influences what and how I share. As a writer my interactions with a person change when I view them as a potential character. No longer am I seeing the person they are in front of me but instead my written idea of that person.

Anonymous said...

Ask somebody, here.
http://advanced.jhu.edu/academic/writing/science-medical/

moviedoc said...

It's not that patients can't give consent, but that the consent is not really free, because the patient may feel pressure to please the doc. I didn't come up with this idea. It's in the APA ethics guidelines. See how patient Barbara struggles:

http://youtu.be/3U9v8KS8aWc?a

What I do not agree with is the supposed gold standard test for adequate disguise which simply involves asking the patient if they can recognize the case is about them. If the patient knows who the doc is, of course they can recognize it. So the best piece of info to disguise is the name of the doc.

I say disguise the case heavily or make it up and state that the case is made up. Better yet, write under a name your patient doesn't know, like Moviedoc.

Anonymous said...

A lot of it is going to be circumstantial--specific to people, place, time. (eg What is okay in the USA isn't okay in Switzerland and what is okay for adults isn't okay for children.) You might not find rules. You might have to just 'do what you think is right.' And trust you have a good moral compass. Of course, if all you care about is not getting sued, just have a lawyer look at it. But the latter is a crass standard for behavior and an ignoble guiding principle.

jesse said...

Those four categories you mentioned, Dinah, do not differentiate between patients who are still in treatment and those who are both not in treatment and will not be in treatment again with the writing physician. For psychotherapists, writing about an existing patient is laden with unresolved transference and countertransference issues (as mentioned by Moviedoc) and should not be done unless there are strong extenuating circumstances (I cannot imagine them but it is possible they exist). If an illness is being described, as the Shrink Rappers did in their book, as opposed to individuals, no there is no ethical or treatment problem.

For non-psychiatric physicians who are simply describing a disease or injury and its treatment, as is the case in most of the rest of medicine, the problems are much less complex.

meg said...

For our case book (in final editing stage and due to be published next year), we de-identified the cases and created composites to minimize chance of patient or family recognizing themselves (the standard recommended by our legal advisors). Most of these composite cases were based in cases of former patients. For next book, however, will get written permission from all patients as this is becoming new standard. I agree with you that case-based teaching is essential. Look forward to reading your book (just made it to top of my pile).

ClinkShrink said...

The Girl: Thanks!

Anon #1:
Well said. As MovieDoc and Jesse also pointed out, there are complications and considerations when writing about existing patients.

MovieDoc: Just to make sure I wasn't missing something I went back and reread the Principles of Medical Ethics as well as a couple APA resource documents regarding public presentations and case discussions. I could find nothing to suggest that the imbalance of power in a therapeutic relationship alone would make a patient unable to give a voluntary waiver of confidentiality. I agree though that a completely fictionalized case (or case composite, as Meg has done) would probably be best.

Jesse: I wrote this post, not Dinah, but that's OK. We can always say it's Dinah fictionalized under the name Clink :)

moviedoc said...

Clink:

From an APA Ethics Opinion:

Section 2-RR “Their consent, while ‘freely’ given, is likely to be heavily influenced by their transference feelings, the need to please you… suggests an exploitation of your patients for your personal gain that outweighs the potential benefit of public education.”

Find more at my post: http://behavenetopinion.blogspot.com/2011/01/psychiatric-ethics-of-publishing-cases.html

BTW Jesse, I did not mention anything about "transference," "countertransference," or any other psychoanalytic mumbojumbo. Consideration of the "need to please" mentioned in the opinion rises above considerations of type of treatment even outside of psychotherapy or outside of psychiatry.

jesse said...

Moviedoc, just take it that I agreed with your point. You did not mention transference, I did, because your point refers to transference issues.

moviedoc said...

Jesse, I appreciate your agreement, but my position is also that the concept of "transference" is meaningless outside the context of analytic/dynamic based psychotherapies.

ClinkShrink said...

The opinion you're citing appears to contradict this opinion from the current edition:

"Section 4
A physician shall respect the rights of patients, colleagues, and other health professionals, and shall safeguard patient confidences and privacy within the constraints of the law.
Q.4.a.
Question: Are there ethical problems in writing a psychoanalytic casebook?
Answer: Section 4, Annotation 3 (APA) states:
Clinical and other materials used in teaching and writing must be adequately disguised in order to preserve the anonymity of the individuals involved.
The problem of disguising is not always easily resolved. Close friends, family members, or the patients themselves might see through the disguise. This could lead to legal liability as well as a charge of unethical conduct. Thus, the psychiatrist-writer must give special attention to this matter and may have to sacrifice some scientific accuracy for the sake of preserving privacy. On occasion, the psychiatrist-writer has shown the material in advance to his or her patients and received their informed consent for its publication. (1976)"

I couldn't find the opinion you cited so it's a little difficult to discuss without the factual context.

jesse said...

"Applies" to transference issues, not "refers."

jesse said...

Transference has implications and applications in many areas, and in life, not just in dynamic psychotherapy. But that perhaps could be the subject of other posts.

ClinkShrink said...

Wait---I just found your reference. It's from the retired 2001 version of the Opinions. And indeed, the facts of the case are quite different from what we're discussing here. Here is the full citation:

"Section 2–RR
Question: I am publishing a book about a particular psychiatric disorder in hopes of reducing stigmatization. With proper informed consent (Section 4, Annotation 11, APA), I wish to present some of my patients who have benefited from treatment to the media in a book promotion tour. Their expenses will be covered by the publisher, and I will have no
contact with the patients other than the public interview while on the tour. I hope to financially benefit from the publication. Any problems?

Answer: Yes, considerable. This is a clear deviation from the original
treatment plan with which the patients were in agreement. Their consent, while “freely” given, is likely to be heavily influenced by their transference feelings, the need to please you. The “reward” in the form of free travel in your near presence is likely to create serious distortions in the relationship. But, most seriously, the entire project suggests an
exploitation of your patients for your personal gain that outweighs the potential benefit of public education. (November 1989)"

This psychiatrist was suggesting that he would actually bring his patients along on an all-expenses paid book tour, while he appears to be in an ongoing treatment relationship with the patient.

moviedoc said...

Clink: If indeed APA sees this principle as not applying to publication of case histories it only confirms that I did the right thing by resigning, in part because I believe the organization is ethically bankrupt.

Jesse: You only confirm my long held impression that those who believe in analytic dogma see the whole world as operating according to those principles, a collective delusion. I am not the only one who soundly rejects that myth.

Anonymous said...

I don't know how the folks at Bellevue got by with a documentary they did. I thought it was very exploitive of patients - showing their faces, showing them struggling while being held down, etc. Patients were being held in a locked facility, in some cases being brought in by police, and yet someone believed they could freely consent to being on video? If it were me, I would have felt I had to consent or my stay would be extended.

Leslie

Roy said...

We are planning to go on a national book tour for Shrink Rap, and hope to bring all of our commenters along on this all-expense paid trip. Except for Rob. Is this ethical?

moviedoc said...

Roy taking us on the book tour will be ethical provided we can all maintain our disguises. Can I wear a Hannibal Lecter mask?

Dinah said...

Play Nice!

The Girl: Thank you!

Meg: Hope you enjoy it.

Jesse: I'm not Clink. I'm more fun.

Anonymous said...

One takes everything about every pt to the grave undisclosed, unless the pt requests otherwise, so what is there to write about?

Rossie // taking the vow of silence quite seriously indeed

Anonymous said...

I find it offensive for Moviedoc to deny the agency of patients in giving informed consent. As an academician, researcher, and a current psychiatric patient, I recognize that some populations are more vulnerable than others, and that power differentials must be taken into account. But to take the position that any such consent cannot be given freely in some circumstances suggests that patients lack sufficient self-reflection, capacity, and agency to make independent and self-directed decisions. As a qualitative researcher committed to social justice and community engagement, I find the opportunity to co-write with "the subject" to be a transformative chance for individual to give voice to their own experience.

Sarebear said...

Since sometimes I have been referred to as sareBARE, I think my disguise would be too shocking for the tour, and must thus decline.

; teehee

Sunny CA said...

As a patient, I'd view the "gold standard" to be, "can any of my friends recognize me" if they read the piece of writing.

Rob Lindeman said...

We are planning to go on a national book tour for Shrink Rap, and hope to bring all of our commenters along on this all-expense paid trip. Except for Rob. Is this ethical?

Thanks, anyway, I'm busy. Book tour? I'll settle for a vacation...

Dinah said...

More on transference (for Jesse):

http://psychiatrist-blog.blogspot.com/2006/08/transference-to-blog.html

Retriever said...

Woof! Did someone say a nIce long walk with a new collar and leash? How kind....

Seriously, that shrink gives new meaning to the word exploitative, bringing along past and current patients. Of course, I'm old fashioned and dnt view the relationship as that between collaborators or provider and client, but between trusted professional and sufferer sweeping expert care, advice and a listening ear. One who can help bring about healing the sufferer has been unable to on their own...without a degree of humility one can't be helped or learn. For that reason, because patients lower their shield walls in the hope of help, doctors must be especally vigiIgant about preserving their privacy.

To use another metaphor, when we enter therapy we hermit crabs take off our shells to grow and hunt for a bigger home. During the time we are searching we are vulnerable. It would not be kind to draw attention to us lest predators pounce. People are at their most vulnerable in therapy, and those secrets are as sacred as those in the confessional.

moviedoc said...

Offended anon raises great questions: Are we too paternalistic in applying the same ethics principles to all patients? For example, might their be cases where it is OK for a patient to marry his physician? The idea of patient and physician "co-writing" challenges our rigid boundary rules. But if some patients DO have the capacity to cross these boundaries safely, how does the physician know which is which, if, for example, the patient steps forward and says, "Let's write a book together?"

jesse said...

Thanks, Dinah, for that link on transference. It is indeed relevant to the discussion of consent as noted in the APA ethics piece that was quoted above by Clink. Freud wrote :

It must not be supposed, however, that transference is created by analysis and does not occur apart from it. Transference is merely uncovered and isolated by analysis. It is a universal phenomenon of the human mind, it decides the success of all medical influence, and in fact dominates the whole of each person's relations to his human environment.

jesse said...

In the discussion of consent it is not only important to consider the type of treatment and whether the patient is still in it but also the way in which the information will be discussed or published. A scientific journal may require different standards of accuracy from one written for popular consumption. Further, the details necessary vary according to the specialty. It may not be relevant in discussing a surgical case that the 50 year old patient lives with his mother, but it might be important for a psychiatric one.

The Shrink Rappers got it exactly right.

moviedoc said...

Well, Jesse, if Freud wrote it, it must be true.

Duane Sherry, M.S. said...

Doctors who write.

Marcia Angell, M.D.
Former Editor-in-Chief, New England Journal of Medicine, Harvard Medical School, Ethics Department

She recently wrote a pretty good piece -

http://www.nybooks.com/articles/archives/2011/jun/23/epidemic-mental-illness-why/?page=1

When does the myth of a chemical imbalance, and chemical cure end?

It appears to many of us that psychiatry's days are numbered.

Duane Sherry, M.S.
discoverandrecover.wordpress.com

P.S. - It would be nice if you left this comment up, rather than watch it disappear (so often the case)

moviedoc said...

Not to worry, Duane, the myth of the chemical imbalance will just be replaced by the myth of kindling. Psychiatry may die, but there will be lots of people with MS degrees, RN's and PhD's to prescribe all those brain shrinking drugs, shocking them silly, and locking them up.

After all, we are what we eat. Integrate those left and right brains! Look at those adrenals!

Duane will show us the way, truth and the light!

WWDD?

Rob Lindeman said...

Re: Duane's comment:

I wish we'd bring back masturbatory insanity. That was a theory that I could at least wrap my hands around [rim shot]

Sunny CA said...

TO: Duane Sherry, MS

That was a terrific article in the New York Review of Books that you posted, with which I agree.

I don't see, however, your conclusion that we will transition from the present in which there is epidemic proportion use of anti-psychotic and anti-depression medications to "psychiatry's days are numbered". If the public finally does wake up to realize that anti-psychotics do more harm than good on a long-term basis, wouldn't psychiatrists be needed once again to provide more traditional "talk therapy"? If the drugs were suddenly banned, there would still be mental illness to deal with. I have been to "Marriage and Family Counselors" and a "talking" psychiatrist, and none of the MFCC's hold a candle to my better-trained, more insightful psychiatrist for talk therapy. His conclusions mirror yours regarding current psych medications.

moviedoc said...

Sunny, I don't doubt your experience, but having been through it myself I don't see what medical school (as opposed to any other adverse life experience) does to make one a better psychotherapist. Some of my best psychotherapy training was by an MSW.

Duane Sherry, M.S. said...

moviedoc,

We see eye-to-eye on Freud.
If you've not read 'Against Therapy' by Jeffrey Moussaff Masson, you might want to check it out -

http://www.amazon.com/Against-Therapy-J-Moussaieff-Masson/dp/1567510221

It will leave you feeling pretty cold.

However, I think Cognitive Behavioral Therapy, Pastoral Counseling, and other approaches can be helpful, so I'm not against all forms of counseling, per say... It has its place.

Re: Your comments

It's easy for any reader to quickly see what you're against.

What are for?
What, in your opinion, works?

In other words,
WW moviedoc D?

Huh, moviedoc?

We wait to hear.... with bated-breath, oh Great One!

Duane Sherry
discoverandrecover.wordpress.com

Duane Sherry said...

SunnyCA,

IMO, the mental health sytem in this country is not only broken, it's shattered.

It doesn't need to be repaired.
It needs to be replaced -

http://discoverandrecover.wordpress.com/mental-health-freedom-and-recovery-act/

My best,

Duane Sherry

Duane Sherry, M.S. said...

moviedoc,

Why the pseudo-name?

It appears you like to dismiss alternative/integrative approaches as "snake oil" with the same passion and disgust you have against psychiatric drugs, Freud, etc...

Who are you?
Why the pseudo-name?

Do you blog in a basement... a closet? If it's the latter, are there skeletons in there with you, 'movie doc'?

Duane Sherry
Carrollton, Texas

Duane Sherry, M.S. said...

Re: comment to moviedoc

typo

... "with the same passion and disgust I have for psychiatric drugs.."

Obviously, you must think they "work", moviedoc...

Not to fear, moviedoc is here.

And the psuedo-name...
closet (or is it basement) psychiatrist is gonna make the world safe for psychiatry!

Duane Sherry, M.S.
discoverandrecover.wordpress.com

Anonymous said...

Duane Sherry M.S.,

When you asked Movie Doc if he blogged in ... a closet, what where you inferring?

Tawny said...

I am in a long-term psychoanalytic psychotherapy. My psychiatrist regularly writes about me in his professional papers. We also videotaped a year's worth of sessions and about 15 minutes of those are regularly shown to other clinicians around the world. I feel like I am making a difference and am happy to share myself. I can't hide at all because my first name is used on camera.

However, now my psych is writing a book for the public. He has taken great pains to disguise me in his writing. There is no chance at all that anyone would know it is me he is writing about. So, as Jesse says, there is a difference in writing for professional vs public audiences.

Was I crazy to let my psych use my videotape? I don't know why, but it really doesn't bother me at all.

moviedoc said...

Tawny: You shouldn't have been put in a position where you should even have to worry about whether your choice was crazy or not.

Rob Lindeman said...

agree w/ moviedoc

jesse said...

Tawny, as far as this goes, "You shouldn't have been put in a position where you should even have to worry about whether your choice was crazy or not'" you may not have been bothered at all about this before you read this blog.

"Was I crazy to let your psych use the videotape?" Taping and using psychotherapy for training purposes has a long tradition. There is no indication in your post that you were put in any improper position at all. If you are concerned with any aspect of it, bring it up with your therapist, as you would do with anything else.

Anonymous said...

Therapy is very, very expensive. If I have invested a lot of money to work on my crap, the last thing I want is a therapist trying to rope me into their research project. Are they discussing the research on the patient's dime druing that therapy hour? Or, do they only discuss the research after the therapy session is over on the therapist's dime? The patient shouldn't have to pay to discuss a therapist's project that benefits the therapist. Also, once you've invested all that money you really do feel like you're stuck because if you go somewhere else you have to start over and spend even more money to bring the next therapist up to speed.

It's one thing if a patient goes into psychotherapy as a research subject and maybe gets really low cost therapy or something, it's another thing if they bring it up once that relationship is already estabilished and the patient is paying out the butt for the time. No thank you.

Leslie

jesse said...

Leslie, exactly so. A patient might answer an ad offering very low cost therapy in trade for being able to use the sessions for training purposes. Whatever the arrangement it becomes important to discuss it frankly. The patient might have mixed feelings about it and feel inhibited in discussing them.

Approaching the patient after therapy is under way has difficulties, one of which is that the patient might be led by the transference to agree to something he otherwise might not.

Dinah said...

It seems there is all this concern about the patient's freedom of choice to say "No, I don't want that" in a therapeutic relationship. I understand the concern when the issue is with the popular press, but not so much for teaching. We have to have some way of educating students. And personally, I think it is far less threatening a thing for a psychiatrist to ask for permission to write for journals or teaching material with the omission of a the patient's name and identifying information then it is to ask if the medical student can do the rectal exam, or to ask a woman in active labor if it's okay if the student checks her cervix (in addition to the resident, and the attending doctor)...having any number of procedures done by a student, or a resident, can be very invasive, perhaps even violating or painful, and this goes on in an environment where it's extremely hard for the patient to say no--often the doctor shows up with a medical student and there is no real discussion. I imagine many patients feel they can't say no...it's part of the deal at a teaching hospital. It happens all the time, and it really is the only way to teach students.

I do imagine that patients who are videotaped in therapy are getting low or no-cost psychotherapy at a teaching institution.

Anonymous said...

Dinah, I don't agree. I don't generally have a relationship with a physician who would want to practice a rectal exam on me and would feel quite comfortable saying no.

Psychiatry is different, particularly if we're talking inpatient. At a teaching hospital in Texas I was threatened that if I didn't sign the informed consent, they would sign it for me. So, suprise, surprise I signed in as a "voluntary patient." Since it was a teaching hospital the informed consent had all kinds of research stuff in the ICD that I was supposedly consenting to, when in reality I wanted no part of any of it.
But, it's too bad because I didn't have a choice.

When the nurse turned around I marked out huge portions of the consent form and wrote "I don't agree to any of this." On the last page I signed my name and handed the consent form back to her. No one ever noticed it and at the time and I didn't realize marking things out of the informed consent document invalidates the whole document. So, basically they treated me with an invalid consent. In an inpatient setting, when patients are threatened to sign in "voluntarily" there is no such thing as consent to research no matter how they might want to spin it.

Unfortunately, too often it seems that competency to consent depends upon what suits the psychiatrist/therapist - i.e. not competent enough to refuse treatment but somehow competent enough to say yes to being treated in a teaching hospital and agree to research. Weird.

But, if it's an ad in the newspaper advertising cheap psychotherapy if a patient joins the study, that to me is very different. There is no threat or coersion or fear involved in that. And, teh patient doesn't have to sign up. So, that I think is ok.

Leslie

Anonymous said...

In re-reading what you wrote, Dinah, I realize you are probably talking about outpatient psychotherapy at a teaching institution. If it was clear from teh beginning, before the therapeutic alliance was formed, that the therapy was going to be part of a research article or something, then I have no problem with that assuming that the patient is truly there by choice - I would not support this if the patient is part of an assisted outpatient thing where they are forced to take drugs and attend therapy or be dragged out of their house and taken back to teh hospital as they are not free to consent to anything under a threat like that. But, if it's clear from the beginning that this is part of a research project and the patient is attending outpatient therapy completely by choice, then I think consent to agree or not is possible.

Under AOT or voluntary/involuntary inpatient psych hospitalization I do not believe patients can freely consent. Because, they cannot just walk away.

Jesse, I agree with your thoughts on the issues that can develop once trust is established and the patient has been in therapy for a while. That's why I think it needs to be clear from the beginning before a patient has invested a lot of money and/or gets attached to the therapist and wants to please him/her.

Leslie

jesse said...

Very often in training institutions or in psychoanalytic institutes therapy is used for training. The therapist himself is likely in training and needs to discuss his patients with his supervisors. Taping may be done. Video. One-way mirrors. All of this is done in an up-front manner and the patient discusses any concerns as it goes along. The patient knows about the possibility of these things in advance and is being offered very low fee treatment in trade for this.

From what Tawny wrote above there is no indication that she was put into any position improperly.

moviedoc said...

Jesse and Dinah: I agree the low fee for treatment with a psychotherapist in training, who tapes sessions, has made sense provided the patient knows from the outset, and there is a tradition. This is part of the deal for general medical patients in hospitals with residency programs and/or medical schools, too. I wonder how this would work if we had truly universal care.