Ethics of "Blacklisting":Should Negative Comments about a Patient be Transferred to a New Doctor? If So, How?
Continuing on with the topic of trusting doctors and the medical profession,
here is a topic which I hadn't as yet covered on my blog but which must be of concern to many patients and perhaps one of the reasons why such distrust is expressed by patients in general. This topic was initially posted on my now inactive "Bioethics Discussion Pages" in 2002 and I got a few responses. I have reproduced the posting and responses below. I have a feeling that this topic should stimulate a few more comments on this blog. ..Maurice.
The Ethics of Transfer of Patient Information from One Physician to Another: Concern about "Blacklisting"
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A visitor to these pages wrote me the following: "I am also interested in the ethics of the 'grapevine' phenomena in blacklisting patients via word of mouth..." It appears that she was concerned that when she has left one doctor and has requested that her records are sent to another doctor, the previous doctor may by talking to the new doctor also provide him/her with what the patient may consider personally negative and harmful information. This information may include the previous doctor's evaluation of the patient's personality, behavior, medical compliance, payment history, drug-use history and many other aspects of the patient's history including the physician’s conversations with former physicians that might not be present in the patient's written record. This additional information may lead the new doctor to change his/her approach to the patient's medical management but also may encourage the new doctor to refuse to accept the patient for treatment.
The concern is that when the patient authorizes transfer of his/her medical record should any other information be transferred orally? Should a physician be prohibited from revealing any information to another physician that is not in the patient's chart? Would it be more acceptable if this information were part of the written record? Should a patient be allowed to review his/her medical record and specifically dictate which portions should be transferred to the new doctor and which should not? Should a patient also specify what should or should not be orally communicated? Would this patient empowerment improve or hinder proper medical treatment?
Here is the question:
How much control should a patient have in the selection of what personal information is transferred by one physician to another?
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Date: Fri, Sep 27, 2002 4:20 PM From: sakers@choctawnation.com To: DoktorMo@aol.com
Health care providers and patients can have bad experiences. If I were the provider I would be asking myself why is this patient transferring care? Is there anything I can do to resolve the issue? The answer for the most part must be a collaborative effort for both parties. The effort must be professionally addressed in the patients record and should be included in the transfer allowing the next provider to have a clear picture of the case. However, we have heard the term "cherry picking", and unfortunately this does happen in the presence of personality conflicts and the almighty dollar(or the lack of). I have observed some pretty fancy foot work in the past. Regardless it is our responsibility to handle difficult cases and follow them through until patient is in the care of another provider, and that includes thorough and accurate documentation (all of it).
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Date: Wed, Sep 11, 2002 1:00 AM From: carlwedell@earthlink.net To: DoktorMo@aol.com
It seems to me that the tough part of the issue is the *way* in which the new physician treats any "negative" information. I don't know a solution, of course, because compassion and tolerance can't (or shouldn't) be enforced.
As with any relationship, both parties (patient and doctor) must be considerate of one another. Transfer of medical information is necessary so that the patient isn't "starting over," so to speak, with the new doctor. Likewise, the new doctor should not have to be "surprised" by a new patient's difficulty with paying bills, difficulty with medical compliance or addiction to illicit substances (the knowledge of which, being important to medical care, should remain a "patient-doctor" priviledge whenever possible). But this also assumes that the new doctor will give the patient at least one chance.
As far as "personality" and "behavior" are concerned, information should be very objective and should only be passed along if it would probably affect *any* doctor's ability to administer proper care. In other words, it requires a certain degree of emotional self-awareness on the part of the prior physician; is the patient truly difficult to deal with, or does he simply push that particular physician's "buttons?" This last bit, self-awareness, should be a part of the training of any medical school program.
In any case, I think all communications from old doctor to new should be documented. And, especially if there are any negative connotations, the patient should be given control of whether or not the records are transferred. But I would say the whole record must be transferred--it's either all or nothing.
Thank you. Carl Wedell, Denver, CO, USA
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Date: Thu, Sep 5,2002 11:35 AM From: moharrisiii@hotmail.com To: DoktorMo@aol.com
You need to be far more concerned about the woman who complained to you, and much less concerned about the "ethical issue". In some medical communities, this can(and has) escalated to an illegal medical blacklisting. She may have impending risk that could eventually cost the woman her life, or cause perrmanent harm, possibly sooner than she thinks. And she may have a very serious legal problem-- potentially a criminal law problem as a potential victim-- and not an issue that belongs in the "juristiction" of ethics at all. When the woman used the terms "the ethics of" and "blacklisting", the term "blacklisting" is the far more important term. This can be criminally illegal. It can also result in death or permanent harm in the longer term. If nothing else, she could be financially "ripped off", along with her insurer, in a trial-and-error effort to find suitable medical services. She could end up with a "medical records reputation" as a nusiance patient, and possible face higher insurance rates or difficulty getting insurance later on(and die eventually from "poor & uninsured" disease). Most Americans-- 95+%, and likely including this woman-- are literate and smart to use simple terms like "blacklisting" quite accurately. And whenever anyone does, it must be taken with extreme seriousness, since this term can refer to a criminal illegality. Whenever anybody, for any reason, makes a statement that indicates a possible criminal illegality of any kind-- and proof is not required, just the smallest probable cause-- it is a very very serious matter, and the worst must be assumed when potential bodily harm could result. This is as much the case in the world of medicine as it is when criminal risk might exist anywhere else, such as the back alleys of the world. When probable cause exists, medicine and its' people are not exempt from the scrutiny of law.
At the very least, this woman should make written statements, possibly in certified letters, and send copies to all concerned-- all the doctors involved and possible her local medical society. She should have these filed in at least one law office. If her statements indicate that a criminal complaint should be made, then a lawyer should advise her to do so, and assist her as much as possible. Regardless, she should be "on the record" with her statements in writing.
The doctors involved are "on the official record" in their medical records, which you can bet will look legally and "ethically" good for them(and not for the patient) in any dispute. If the woman gets "equally on official records" in a way that shows that the doctor's story is not the only story, that the doctor's way is not the only way, that the doctor's judgement is not the only or final judgement-- if the woman does this, then the doctors might decide to behave in "a different way". They might decide to work on their "behavior problems". When medicine and it's people are exposed to reality-- that they are subject to the scrutiny and judgement of others, including the law and those who pay their bills and support their livelihoods; that their judgments are far from final, that their authorities are not the most powerful or enforceable authorities(doctors in "my neck of the woods" don't like this at all)-- when medicine is faced with this "spotlight of scrutiny" from the bigger world outside their own, doctors will often "rethink their ethics and policies". If the woman "gets on the written record" with her own well worded statements, it may avoid more serious legal problems later on, and reduce the chance of physical harm. She might also end up with smaller medical bills without a loss of service!!
M O Harris III
Well, what do my blog readers think? ..Maurice.
posted by Maurice Bernstein, M.D. @ 2:37:00 PM
21 comments
21 Comments:
This subject actually gives me butterflies.
I don't how this sort of communication can be prevented ... I don't think it can.
I would hope that the physician on the receiving end would take the time and effort to form his own judgments.
Sometimes a physician and patient have have a difficult time communicating, or even have clashing personalities. The patient may not have that problem with a different physician.
People are people, after all, and the chemistry is going to vary between different people - no matter what profession one of the two people is in.
This sort of thing can actually make a patient feel trapped with one particular physician with whom they feel they can't communicate, because they're concerned about misunderstandings caused by miscommunications following them to a new physician.
Moof, you are quite right. If a physician won't consider the possibility that it was his/her problem that led to the patient's behavior, therefore marking the patient as a "problem patient", then one would expect out of professional courtesy this physician would want to notify the new physician of the patient's "behavior issue". How many physicians would first, before wanting to communicate with the new doctor, sit down and consider "in what way could I have been responsible for the patient's behavior"?
And Moof, what do you think about allowing patients to review their charts, reading what their physicians never talked to them about but also making their own permanent "corrections"? ..Maurice.
what do you think about allowing patients to review their charts, reading what their physicians never talked to them about but also making their own permanent "corrections"?
Dr. Bernstein, I believe that this could probably be a helpful "balance."
Relationship implies at least two individuals. The relationship between a doctor and his patient has two sides, two perspectives - both valid.
A third party, especially an interested party, which is about to enter into a new relationship with another physician's patient, should be allowed to see both perspectives, since it's likely that neither single perspective has the entire picture - never mind the entire truth.
About a patient seeing his records - I personally believe that a patient should be supplied with his records if he asks for them, and have a right to add to them - but not remove from them.
While I want to trust a physician to make medical decisions for me, I feel that I have a right to know what my medical records hold; after all, who do these records concern more than myself?
However, I realize that this could be problematic in some cases, even when when there hasn't been any snarky charting; for example -- a lack of understanding of medical jargon could cause misunderstandings where there weren't any before.
Blacklisting of patients does happen. (See my site at http://www.patientblacklisting.org. It happened me to to the extent to where I had to leave family in a city I lived in for 20 years, and move to another state in order to get health care. Everyone says "What did you do?" I didn't "do" anything. I filed one complaint against a doctor. It acted like a stack of dominos. Also a few of the places might have just not liked the way my voice sounds (I talk loud due to a medical condition, and even though I tell the receptionists I am not yelling at them, some chose to think so anyway). One time it was due to mild crying when a female nurse practitioner dropped me as a patient because of gossip. Some may have been just because they didn't like me, even though I mean well and try to be a kind person. One surgical center found out I had filed a complaint and blam! That was it. Blacklisted with them, because a doctor there had been through an ethics complaint from some other patient, so he was paranoid. However, it was pretty much told to me that the reasons were gossip.
I hope you'll stop by my site and write something in my guest book.
I think that all the conversation between patient and physician should be absolutely closed for everyone no matter if he is a physician too. And a patient should choose himself which part of their discussion should be recorded!
The problem is that if a doctor doesn't like a patient (and doctors are human), and he places negative comments in a patient's file, the next doctor starts out the relationship all wrong. It happens every day, and patients get blacklisted every day without the use of a computer and without suing. It happens in all industrialized societies.
http://www.patientblacklisting.org
Thank you so much for bringing this topic out of the closet. For years I had felt my doctors were ignoring me and any symptoms I would try to bring to their attention. Two years ago an ENT removed a very large cholesteatoma from my right ear and when I woke up from surgery he apologized for not being able to save my hearing because it needed to be removed six years earlier, indicating the condition went undiagnosed for maybe up to twenty years. So imagine my frustration when I was told there was nothing that could be done. What could I do? Remove it myself? Because my doctors turned a deaf ear to me--my ear turned deaf. Doctors--wake up!
This issue of blacklisting of patients is a time bomb waiting
to explode. Its a hipaa violation
and gross breach of patient confidentiality.
PT
I am a patient blacklisted by doctors. Throughout my medical records it says that I am a pleasant person. So why am I blacklisted? I have done nothing wrong. They failed to diagnosis several life threatening illness and said that I am mentally ill.
It was a difficult diagnosis, but why discredit me. They were afraid I would sue.
Later two excellent doctors made the correct diagnosis, but this negative information continues to be forwarded to new doctors preventing me from getting treatment. Several doctors said that I was trying to get money.
I had already been approved for disability. Medicare immediately approved my disability claim. Their comments caused my private insurance carrier to close my claim. Then My private carrier, after 18 months of background checks says I am dying, but I am still blacklisted, lied to, and denied care.
When my doctor retired the new doctor refused to treat me for the illness that had been previously diagnosed.
They prevented me from seeing doctors in another state, telling them I was mentally ill when in fact I passed two neuropsychological evaluations.
I had to leave my family behind and move to another state for medical care and the doctors here discovered another life threatening disorder.
An ER doctor accused me of secondary gain, although my blood pressure was 210/100+. I spent eight days in the hospital and my blood pressure is still not controlled. How can you fake missing organs and deformed bones? How can you fake abnormal MRIs, CT scans, and lab tests?
One doctor wrote in my chart that I filed a race discrimination claim against a state agency. The agency was withholding benefits. Nothing whatsoever to do with medical care and everything to do with my returning to work.
So explain to me how they have a right to deny medical care because I filed a complaint against racist acts by state employees.
BTW, nobody cares. I have had to educate myself about my medical illness and they get mad because I am knowledgeable. I have to be because my illnesses are complicated and rare. They were just going to let me die. I had to do something.
Sorry this is anonymous, but they will retaliate. My next step is to leave the US.
Veritas
Veritas, perhaps you need a lawyer to help you through all of this. ..Maurice.
Dear Medical/Patient Bloggers/Readers----I am living proof, (for now) that Medical BLACKLISTING of surgically damaged patients does INDEED exist. see my website at www.tossurgerynightmare.com I am DENIED HELP because a surgeon did a bogus surgery called Thoracic Outlet Surgery March 2004--and he Botched me up badly. Prior to it, he lied about all the risks on a document I signed. All I wanted was a way back to my life--and career as a teacher, hiker, etc. He was a BUTCHER. and then tried to BLAME me for his FAILED outcome-saying I should SWING MY ARM when I walked after surgery. And so, I did, but he still blamed me. He left me with a paralyzed LTN (winging scapula) and Phrenic nerve)and severe problems now. He yelled at me at my second follow-up appt. to "TELL ME WHAT IS BETTER" Nothing was better. I tried to be compliant--but he terminated the appointment and stormed out of the exam room--refusing even PAIN meds for my Writhing arm with Brachial Plexus damage, a neck half CUT out by him and then stitched back too tightly, and a RIB he CUT out completely for NO REASON. I KNEW the medical board would do nothing--so I filed my own Lawsuit IN PRO PER--knowing I was too disabled to continue it. The hospital's and surgeons attorneys were on me FAST, with their threats and Discovery forms (see thedoctorscompany.com I couldn't even open their mail I was in so much pain and so weak. As I expected, the Medical Board of CAlif. did NOTHING to this surgeon--and I heard he did over 60 of these very dangerous and BOGUS surgeries--probably still lying about the risks. Medical BLACKLISTING of surgically damaged patients in need of HELP should be a CRIMINAL offense and so should surgical battery...with LICENSE SUSPENSION forever in my surgeon's case. If anyone has ideas of HOW I might find medical help now--I would embrace them--as I am DYING a slow, torturous death on Medicare. It doesn't help for me to have insurance if ALL DOCTORS ARE AFRAID TO TREAT MALPRACTICE SURVIVORS. Also with tort reform (MICRA LAW)-it is IMPOSSIBLE To find an attorney in CA--so the taxpayers of this country are supporting me and MANY others after both the hospitals and surgeon(s) made a tidy profit from ruining bodies, careers, and lives with NO attention to ethics and NO lessons learned by the harm they do. Please see my website www.tossurgerynightmare.com thank you Ms. Bobbie Jenke
To understand medical
blacklisting:
google
Deadly Medical Practices
by Tudy Newman (patient advocate)
Conclusion: Patient Beware.
Topsy.
I had a doctor who misdiagnosed me. I simply asked for an apology. I had proof that the treatment requested was appropriate and recommended by 2 different specialists at 2 different groups. I asked for that doctor to give me the treatment. He got very offended. I let him know that I had been asking for the treatment, and that his treatment, leaving me in daily pain, didn't work & hadn't for months.
All I asked for was an apology.
He stated that I "pushed his buttons".
Suffice it to say I could never get a clear view of what he was treating me for in "followups". Finally, after seeing what I thought was a HIPAA violation, I complained to the hospital. The doctor dropped me from his practice. I didn't like him, so that I was ok with.
It is just that now the regular PCP I have, who works for the same corporation, all of a sudden doesn't have time to diagnose me. I have listed the symptoms, and it seems his idea is another specialist (which it seems that is all he does, send me to specialists, and he provides vague symptoms) or the ER.
He can't seem to tell me why or when I need to go to the ER (as in, is it REALLY necessary & appropriate to do so). Or what I would need to tell them, if my symptoms are at the stage where I need to go. I was put in the hospital by a different doc long before now based on lesser symptoms than this. I would have thought a history of a disease, and then worsening signs of that disease, would give the doc a clue as to when I should go to the ER, but nothing. Just he'll get back to me when "he's available".
I called another PCP doc. I asked the office staff, can they diagnose this? They said yes.
Sounds like blacklisting to me. Your thoughts?
Amazing. I'm not into suing people, but I can understand why people go after docs. I've had docs before make mistakes, apologize and we move on. I frankly thought better of them for it. If you're honest, I can trust you. If all you can do is document vague symptoms and send me to ER's or specialists, when the same specialty (family) can say they can diagnose it ... what are my choices?
Blackballing or education? Your thoughts?
Anonymous ... but wiser, and sad that docs can't work with patients who know about medicine.
Though I am against blacklisting and never did so with any of my patients, I can understand why doctors can become frustrated when the patient's view of their illness (both cause and treatment) is their own and refuse to listen to the arguments otherwise as presented to them by their doctor. Yes, debate about views can be a reasonable exercise especially when there is misunderstanding on either side regarding what the other really is trying to express. But at some point, the patient should remember that the physician is present as a consultant and not as a debater and if simply debate is the main action expected by the patient, the purpose of the visit is thus misunderstood. Having the patient's questions answered by the doctor as part of the eventual informed consent for further diagnosis and treatment is what the communication, in part, should be about. But setting the primary purpose of a consultation as a debate will not sit well with most physicians with their limited time available with each patient and their own professional duties to accomplish. However, blacklisting the patient to another physician is a behavioral wrong since what led to the blacklisting may be only in the eye of the beholder (only the doctor who did the blacklisting)and represents unfair treatment of the patient. ..Maurice.
THANK YOU Dr. Bernstein. FIRST time I've ever had someone give me a truly useful comment.
What I'm trying to figure out is how I can get decent health care without having to call out what are pretty obvious boo boos. IE: medical literature says albumin is not a reliable indicator of malnutrition. When I have 2 docs tell me it does, I have to wonder about their education & expertise. When I've had an over 10 year history of GI issues & 4 abdominal surgeries, & you say my GERD is because I'm mental (I've passed a psych eval), you lose credibility.
I have been dumped after a HIPAA violation was reported. I've had clear violations of other laws go on. The fact is, needing to see proof other than "I said so", didn't start because of me, it started because of
a) care mistakes that were
b) blamed on the patient vs. a collaborative 'fix it' effort,
c) having to jump through 50 hoops to get them rectified.
I don't like debate either. Any ideas on how to get decent health care from people who know what their doing and don't blacklist you?
And yes, that's exactly what the original doc did.
To Anonymous from today: To be aware of the physician's behavior and knowledge before the first visit may require some preliminary investigation if you have time. One suggestion is to check with your state's and country's licensing board and read about the education, practice experience and whether there has been any legal actions taken. The next is to try to communicate with one or two of the doctor's patients if you can find them (better: to be referred to the doctor by the doctor's patient). Finally, if your medical conditions permit, use the first visit as a "sit down" visit with the doctor and ask the doctor directly about his or her education, experience with your known conditions and also learn about the doctor's personal views such as religion and what the doctor considers an "ideal patient" or considers a "bad" patient. If the doctor can't accept such a first visit, it may be that the doctor is not the "right" one for you. I hope these suggestions help. ..Maurice.
Actually, not only did I investigate the docs as you suggested, I also combed for any info that patients had on them. Nothing. Then again, none of the patients got blacklisted for the docs' mistakes. My mistake was complaining about it.
The problem is, the one doc with the most experience, is a buddy of the "blacklister" so I can't see him. The office simply says we have a note to refer you elsewhere, because I asked the reason why. They won't give me one other than that. Another one plays golf with the blacklister, and another one went to school with the blacklister.
The other one now I'm seeing won't do anything. I can understand, because he's not qualified (and I think he's right) or has the experience to handle it. He's doing what he can, but its not his fault.
I can actually draw you up a list where I get prescriptions from & who gives me a dx and treats me, and who basically does nothing or just OTC stuff.
The worst part is that I was stupid enough, when I complained about the doc, said that I thought the problem was that he was just overwhelmed and needed some help, another pair of hands. I pointed out they have a medical school not far away and they could hire some grads. This is how someone is repayed for trying to get help and asking for help so that things are better for everyone.
I appreciate it Dr. Bernstein. It is probably too late for me. Maybe I can do something to warn others on how the medical system works.
Anonymous, if you are comfortable with your current doctor, let him direct you to specialists who can help you with your problem. Best wishes. ..Maurice.
I received the following from Birddidit today but I edited out the specific identifying names since this blog is for medical ethics discussion and not accusations of specific and identifiable individuals. ..Maurice.
On September 24th 2012 I informed AF under Dr.S leadership about needing again, an operation that I’d previously had performed on me November 23th 2012. The operation was to remove tubular adenoma growths from my colon and it was performed by a Dr. R at the Medical Center. I specifically pointed out to her that I was having the same symptoms as before and was sure of my diagnoses.
On September 27th 2012 instead of sending me to a surgeon that could correct my situation I was sent to a liver specialist by the name of Dr. M who had absolutely no practice in removing tubular adenoma growths, yet he did a colonoscopy on me anyway that cost Medicare $5000.00. It was an unnecessary operation and after that Medicare milking, he then alerted Dr. S office that I still needed to have the tubular adenoma growths removed and that I possibly had internal and external hemorrhoids problems as well.
No one notified me of this at all so three months later I complained to AF was then sent to see a Dr. T on December 11th 2012. When Dr. T entered the preparation room with me that afternoon his attitude was very abrupt, he rushed in with his arms folded, and not once did he ever unfold them during our entire encounter.
Dr. T deliberately and intentionally entered false information being propaganda and slander into my medical records as an intentional means of oppression by other doctors toward me, while at the same time using unjust and excessive authoritative force as a means of denial and rejection of his own services to me because of my race and because of my disability. Due to the aforementioned situation my need for this surgery is still left unresolved one year later with today being December 13th, 2013.
I’m already beginning to experience some of the affects from the slander that Dr. T entered into my medical records, as I’ve transferred some of my medical records to another doctor; now appointments are being canceled and rescheduled hoping that I’ll give up all together in seeking their help for medical services and I’m fearing this is only going to get worst.
I’ve been under Dr. S care since January of 2007, but if her office had performed their jobs correctly then I would have never met Dr M If I had never met Dr. M then I would have never met Dr. T, and my last year would not have me five pounds shy of contracting diabetes due to overeating from this stressful situation.
I tried talking to a psychotherapist name J.S. and felt he’d contacted Dr. S office. I tried talking to another one name S.B. and although she’d seemed excited about having me as a client; I called her back on December 9th 2013 as she’d asked me to but got a voice recording instead and she never returned my call !
I feel completely violated by my state’s medical system and wonder what happened to my patient rights that I could be treated with such disrespect.
birddidit on twitter
Dear Maurice: I am in a situation with my 9 year old son who has Lyme Disease with associated coinfections. I don't know if you are aware of how dynamic this disease is symptomatically, but also, there is so much medical & political nonsense that we are faced with. I recently transferred my son's records to a new PMD. We had seen his pediatrician 9 months ago with symptoms. We recently saw him on a MON & he was stating that after we do the Lyme treatment x 1 month that we should probably see a neurologist. We were called in for a meeting on the same FRI. The physician had done his mini private investigation & decided my son has somatization disorder. He called the school nurse, called a previous physician that I never signed HIPPA release to him & then threatened to report him to the medical board. The next MON I requested transfer of care. My son is not making this up. Been there done that myself & will not tolerate the medical system doing the same thing to my son with consultation after consultation & yout no further ahead than you were before. We know what the dx is. I received a letter in the mail yesterday from the pediatrician-certified. "The PICC line needs to be out within 30 days, & a visiting nurse be involved weekly..." Does this MD have any authority to dictate any medical care advise to me anymore? He is concerned about the visiting nurse now? The PICC was in x 3 weeks under his care & the office never sent the referral to PHN as I repeatedly asked. Please advise. THANKS-Laurie
Though, based on my reading of your posting I don't feel I know or understand all the facts of your son's case and management, however, I can say that a patient's physician who is actively involved in researching the case is not violating any laws to provide information and details from professionals and others without disclosing the identity of the patient.
Calling the school regarding your son without your knowledge, understanding and approval would not be professional.
Following termination of the doctor-patient relationship, it still would be professional and proper and perhaps essential for the physician to communicate with the patient/caregivers regarding what he or she considers as important issues of management as the patient transitions to another physician. It would be unethical to withhold important information to the patient regarding care and management just because the physician is no longer the patient's physician. ..Maurice.
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