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Wednesday, June 24, 2009

Cancer Rx & privacy: My Angels Are Come

Art Stump's book, My Angels Are Come addresses this issue in a compelling manner with all its ramifications. There have been several posts concerning this book over the last 6 months. By request I will consolidate those posts and I have invited the author to join us.
This thread appears to be full and will not accept further posts. Please continue posting on Part 2.

207 comments:

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Joel Sherman said...

This thread will highlight the book My Angels Are Come by Art Stump.
It is an intensely personal account of the author's successful battle with prostate cancer. It contains a detailed account of his therapy. It also includes several gross violations of patient privacy which left him stunned, almost like having a post traumatic stress syndrome.
I highly recommend the book to all who are interested in patient privacy. It can be bought from the author at his site.

I personally would like to know how the author followed up on his privacy complaints with the hospital. The book does not go into extensive detail on it and more time has passed to pursue it. The incident called out for redress. It could serve as a model for others who have had to face similar situations.

The next several posts are a compilation of older posts about this book which have appeared in several threads. I hope we can use them as a starting point.

Joel Sherman said...

Joel Sherman said...

I am in the process of reading My Angels Are Come by Art Stump, a very real account of the author's battle with prostate cancer. In it he describes a nearly unimaginable violation of his privacy. At the Memorial Hospital of South Bend, Indiana, he is lying nude on a table surrounded by therapists and nurses plus a young girl he has never seen before. As they start treatment, a nurse introduces the girl to the others as a high school student who is just there to watch, part of a program the hospital has with the school. He was never asked even then if her presence was OK. He was too paralyzed by anger to object at that time. The book goes on, and I haven't finished it yet, but this is about the most severe invasion of privacy, short of an actual physical assault, that one can imagine.
I hope most readers of this blog would have objected immediately or even better asked who she was to start with. But I'm well aware that while you're in the middle of life saving cancer treatments, it's hard to object and interrupt treatment.
As a medical student decades ago, I remember being given a tour of the radiation therapy department and witnessing a teenage girl receiving therapy while completely exposed. I'm sure no one asked her permission either, but it was a different era, and at least we were bonafide medical personnel though not involved in her care. Amazing that worse incidents can still happen today.
December 2, 2008 8:31 PM

Anonymous said...

Dr. Sherman, I don't mean to step
on the Art Stump posting which deserves much comment but please
go to the following address for a
shocking case of young females
caring for elderly patients.

http://www.thesmokinggun.com/
archive/years/2008/1202081minn1.html

Are these young women members of the Future American Nurses Club?
Is this the female caregivers' mind at work? Are these the chaperones who are brought in to humilate men during exams? If so, we all have much to fear! I hope they'll discuss it on allnurse.com.
- Jason
December 3, 2008 10:33 PM


Joel Sherman said...

Well Jason, your link relates physical assaults, clearly criminal offenses, whereas the Stump book relates an invasion of privacy, clearly much less serious. But both stories have in common the use of untrained or poorly trained teenagers for purposes that they are not ready for. The Good Samaritan nursing home in Minnesota was clearly responsible for supervising this gang of teenage girls and tragically failed to do so. In the Stump book, the fault was all the hospital's for bringing the girl inside in the first place, let alone without asking prior permission.
Hospital programs that introduce high school students to the health field are not rare; a local hospital has one. As far as I know the kids, both boys and girls, are never left unsupervised. These two stories will stimulate me to attempt to discover just how much patient contact they have and under what circumstances.
December 3, 2008 11:12 PM

Joel Sherman said...

Anonymous said...

one would wonder if the case cited in South Bend would not be basis for a Hippa suit. Doesn't have to be successful, just needs to be filed and on record to have effect.
December 5, 2008 8:19 AM
MER said...

I think this case could represent the tip of the iceberg as to what's happening in a system that's under stress. I'm speaking specifically about nursing homes, but I think this could apply across the board. As we all know, there's a serious shortage of nurses and doctors, especially in some places and disciplines. There's no shortage, however, of illness and disease. And, we have a growing aging population. The system needs workers, and in crisis situations systems get workers any way they can.
A historical analogy: The "profession" of nursing is relatively young. The first nursing schools in the U.S. started in the 1870's. Soon, almost every little hospital had a nursing school. Why? Cheap labor. These nursing students weren't paid. They not only worked in the hospitals without pay, but the hospitals could send them out into the community to work with private patients -- the salary coming back to the hospital. It was a money making operation for the hospital.
There's a firm line between "getting kids interested" in nursing, and letting them do the kinds of care these girls were doing, apparently unsupervised. Obviously, it's cheap labor, doing the kinds of things that are not considered the most pleasant things to do; but serious work that needs to be done.
I'm confident the nursing profession is working to stop this kind of abuse. But the motivation to push this kind of activity is often administratively driven. The surface reason is to "interest" kids in the profession. The real reason is to get some extra help, cheap labor.
December 5, 2008 12:33 PM


Joel Sherman said...

Anonymous of 12/5, you cannot presently file a private action under HIPAA for damages. Only the feds can do it, and they do so rarely. You could file a malpractice suit against the hospital without HIPAA being involved, but without physical injury or financial loss, it's hard to make the suit worthwhile. If the incident that Art Stump describes had happened to me, I would have complained directly as he did, but then I would have taken the complaint further to a state regulatory commission and/or JCAHO. Neither of these organizations would likely impose monetary fines, but it would make it much less likely that an occurrence like this would be repeated. Hospitals don't like bureaucratic interference anymore than we like dealing with city hall.

December 5, 2008 7:30 PM

Joel Sherman said...

MER said...

I would like to urge all readers of this blog to read the book, "My Angels Are Come" by Art Stump. It's a detailed account of a 62-year-old man going through prostate cancer treatment. You get the kind of detail that you won't get from hospitals or doctors before the treatment begins. He goes into very personal issues related to privacy, modesty, relationships with caregivers, etc. You won't find this kind of inside information about what goes on in hospitals in very many books.

At one point in his early treatment, he is laying naked spread eagle on an exam table ready to undergo a procedure, when he notices that other people are in the room. Then he heard a tech introduce a high school girl was there to "shadow" the procedure. The tech comments, "She's just here to watch."
You need to read how this event affected his psyche, almost drove him to violence, haunted his dreams, humiliated him. You also need to read about how he questioned whether he should even complain because he felt it might influence how his life-saving treatment at this hospital would go. It shows how frightened and vulnerable patients can be. Untimately, he spoke up and complained.

What bothered me was that, when this event happened, several nurses and techs were in the room. No one put a stop to it. Perhaps they were too busy doing their jobs. But I can't believe that one or two of them just didn't have the guts to stop this humiliating privacy invasion from happening. No one intervened.

But the book is about more than this one incident. He writes about other privacy violations and attudes he encounters. But most importantly, he is able to separate the sometimes cold, inhuman hospital culture from the kind and caring people who work there. That's important.

Everyone needs to read this book, especially doctors, nurses, CNA's, techs and other caregivers.

I would like to start a discussion with others who are willing to read this book and respond to what he is writing.
June 23, 2009 2:47 PM


MER said...

I don't know who originally mentioned this book -- My Angels Are Come by Art Stump -- but I just read it and everyone on this blog needs to read it.

It covers much of what we're talking about, from the personal experience of a man who went through prostate cancer treatment. What's important, I think, is that he is extremely observant and quite even-handed in his assessment of the hospital culture. He is able to separate the kind, caring nurses and techs who work with him from the cold, calculating administrative, financial, management of the hospital. As the title of the book suggests, he considers his nurses and techs to be angels.

A horrible experience happened to him, an invasion of privacy and dignity that is almost beyond belief. Excuse me if I use the word obtuse (meaning insensitive and stupid) to describe the people who did this to him. With his reaction, what you see is how traumatic these events can be -- I would call it post-traumatic-stress. His mind, body and spirit completely shut down while the event was happening, a survival strategy our we use to get through things like this. It reminded me of how women describe the shutting down, the out-of-body type experience they have while being raped. This man was emotional raped.

But he fought back. He complained. He wrote a letter. He didn't get a satisfactory letter from the hospital administration -- just a cliche-ridden, lip-service response. But then, he got the final word by writing his book.

I plan to post some quotes from it, but I strongly recommend that you, Joel, create a special thread for responses to this book. Let's see if we can actually get people to read it.

Frankly, I would not grant a license to any doctor or nurse or tech or cna or, especially, hospital CEO, who has not read this book. I exaggerate, of course. But that's how important this book is for the topic we're discussing.
June 23, 2009 12:41 PM

Joel Sherman said...

Joel Sherman said...

MER, I am not surprised that the nurses and technicians didn't intercede on Art Stump's behalf. It almost certainly wasn't the first time the hospital brought kids into clinical areas and violated patient's privacy. It was a program run by the hospital which the employees were expected to cooperate with. If they had any disagreement with it (which they should have), they would likely have expressed it privately through the physicians in radiotherapy and not publicly in front of patients. Their jobs could be at stake.
June 23, 2009 6:04 PM


MER said...

Joel:

And what you say, Joel, is exactly what Stump points out -- the fact that the upper management is creating these "policies" or "situations" where modesty violations happen. Why? Because hospital management isn't focused on patient comfort or dignity or respect. At least not unless it affects the bottom line. They are focused on recruiting, HR issues, unions, and making a profit. And they are in charge. And the medical staff, good people at heart, are afraid to confront this upper management.

But this is where true professional ethical decisions happens or don't happen. This is where the rubber meets the road in medical ethics. Do you stand up for what you know is right and prevent an ethical wrong from happening? Do you stop a patient from being humiliated and risk your job?
I guess not.
This is why patients need advocates. I don't want to believe this, but it becomes more apparent that upper management hospital policy and decisions drastically affect how front line caregivers make ethical decisions day to day. Good as these people are, they won't risk their jobs to protect your dignity or privacy.
That's sad.
June 23, 2009 10:31 PM

Anonymous said...

I certainly would like to know
the complaint process he followed
in bringing his concerns to light
as I read somewhere that he recieved lip service from the ceo.
There are certainly many other
agencies to complain to that gets
rather quicker results. I'm sure
that it is an interesting book,however,I already know these
instances occur as I've been there
done that. Rather sad in my opinion
that he had to resort to writing
a book to get facts out to people.

PT

artstump said...

If I may, I’d like first to thank Joel for contacting me and inviting me to participate in this forum. I’m amazed at the passion and energy of the discussion going on here. The contributors have many insightful things to say and, I believe, have generated a very worthwhile discussion. However, since this is my first time ever at blogging of any sort, I must find my way as I go, so please bear with me. And since Joel was wondering about what has since happened with Memorial Hospital, let me start with that.

After receiving essentially two deaf ears from the hospital's Privacy Officer and the hospital’s executive Ethics Committee, I filed a HIPAA complaint with the Dept of Health and Human Services, Office for Civil Rights, Region V, in Chicago. I also filed a complaint with the Indiana State Department of Health. Bottom line, nothing much came of either complaint. I suspect that formal complaints made to government agencies overseeing healthcare systems are easily disposed of by the implicated hospital system by its essentially responding with a "we've taken care of that" reply, or so it seemed to me, an outsider trying to follow up for something more substantive. Although I believe that my complaints did feed into a running tally that such agencies keep for hospitals, I wouldn't be surprised if that counting was reversed following the "successful resolution" of the complaint.

I eventually brought in a lawyer (what a godsend he was) and, of course, things became even more adversarial. The matter is not closed and I understand that litigation is still an option, so I should probably not discuss additional detail. In any case, I changed tack and began devoting all my energies to the writing of My Angels Are Come.

Next, to the June 23, 2009 comments of Joel and MER, I would like to agree and emphasize that it is indeed the hospital enterprise that establishes treatment policies and practices. It then falls to the hospital’s employees to adhere to those guidelines in carrying out the work assigned. In a treatment-therapy scenario the caregiving staff are the ones ultimately charged with delivering hands-on medical care to patients who need it.

We must not forget, however, that much of the work required of such medical caregivers involves face-to-face duties of the most intimate sort on a daily basis. It’s easy from afar to zero in on the flagrant faux pas of a patently failed hospital policy, but most situations are not nearly so clear cut, not nearly so black and white. I believe that most caregivers “in the trenches” are able to carry out their very crucial and very demanding responsibilities with patients only by relying upon the institution around them to provide them with a framework of perspective and moral clarity, a framework in which they can devote themselves wholeheartedly to their patients’ needs and their patients’ therapies.

Things can get very intense and very complicated at the point of treatment, and asking caregivers to struggle with moral and ethical subtleties at that moment can only jeopardize and possibly compromise the unwavering attention so necessary for successful patient treatment. I suspect that therapists and technicians rely heavily on the presumption that others “higher up” have conscientiously wrestled with and worked through any ethical uncertainties inherent in the hospital’s programs and policies. And I suspect that they do this more as an article of faith, a given. In the end we must not forget that it is the hospital that has the burden and the responsibility for the trust of its patients, and it is the hospital that has that same burden and that same responsibility for the trust of its own employees.

Joel Sherman said...

Thanks so much for responding Art. Your book does give a human face to the kind of violations that occur regularly even if not usually so seriously.
I think you are following the right course by pursuing the issue. I'm not surprised at the hospital reaction you received. They are typically worried only about lawsuits, but bad publicity also ranks high in their fears. That's really your major weapon which the book accomplished.
HIPAA does not allow for public action, though I note that there was a bill introduced this year to change that. Don't know if it was passed into law. Also HIPAA is concerned about privacy violations, but not about modesty violations except in the most general sense. That is in part why this blog puts the emphasis on patient privacy rather than patient modesty.
The main incident you described was an egregious violation of your privacy. Without asking permission the girl was brought in while you were undergoing cancer therapy. Chances are great she was told your identity or heard you addressed by name. It is unlikely that she was warned about patient privacy concerns and sworn to protect your identity like all hospital employees are supposed to be. This should be attested to in writing. But even if this was done she was a minor and couldn't be really held to the agreement. Does anyone doubt that she told her parents and friends all about it? Similar comments could be applied to other violations in the book such as when the hospital threw a fund raising cocktail party in a patient area where you were standing in a gown. Obviously all those people too now knew you were under therapy for cancer.
Why do hospitals do this? MER is correct; they do it to raise money and to recruit potentially new employees. That does not make them evil; they have to exist in a climate in which there is great financial pressure on them. But traditionally, patient privacy and modesty rank at the bottom of their concerns.
That has to change. Unfortunately bringing or threatening lawsuits is the most direct way of achieving change.

Anonymous said...

Out of curiosity Mr. Stump, what is the meaning of your title, "My Anels Are Come" ? I have ordered the book and am awaiting it's arrival. I am quite interested in reading your account of a horrible expereince. I too suffered a miserable medical experience that I was left very angry about. I was also curious if you have a spouse and if so, how she reacted to the experience.

Thank you.

MER said...

Art:

So glad to have you on this blog. As I've said, you've written a very important book. One of the few books from a patient's perspective that addresses this issue and is quite fair in it's treatment of medical professionals. It took great courage to write your book, and honesty.

One thing we can do on this blog from an activist point of view is to help Art promote the book. I'm going to recommended it to every medical professional I encounter, especially those involved with cancer treatment.

Joel Sherman said...

Art, the incident you so vividly describe in your book has multiple components. The most glaring is the violation of your modesty by bringing in an unannounced high school girl to observe while you were completely exposed. That is what would bother readers of this blog the most, but I'm not sure that it was your main complaint.
Secondly, your privacy was violated by having your identity exposed to a lay person who had no part in your medical therapy and likely no reason to honor your privacy. That was the primary legal violation in my opinion.
Lastly, I got the sense that you felt betrayed by the hospital. You thought that their primary concern was for your health and treatment, but instead they seemed to consider you merely a cog in the wheel to self promote themselves. I wonder if you could comment how those factors interacted on you and which you thought were most important.
I too think it is important for you to get the message of the book out. You illustrate very well the difficulties patients have in dealing with life threatening conditions and therapy and how most patients are at a marked disadvantage when trying to determine their best medical course.
Have you considered giving at least some local lectures? I'm sure at least the one active member of this blog who is local to you would be very interested.

Anonymous said...

I might add that when it all boils down to patient privacy,that
responsibility falls on the
nurse or radiation therapist
and as such complaints should
have been made to the respective
agencies.


PT

Anonymous said...

To Mr Stump

My understanding sir is that you
were at a radiation oncology suite
as a patient with a high school student as an observer as part of a program with the hospital, is that correct? If so that sends up a major red flag as in the U.S. one cannot be employed as a radiation worker under the age of 18.
That includes cat scan,nuclear
medicine,x-ray,radiation therapy
and pet scan. All radiation workers
must carry a film badge,dosimeter
report. The badge reflects lifetime
cumlative reading over ones life
and as such it is forbidden for
anyone to be given a film badge under the age of 18.
That fact that she is a minor
dictates that she cannot be monitored in such an environment,
consequently minors cannot shadow
in areas where staff must wear
a film badge and where ionizing
radiation is used. In areas such
as radiation oncology there are
film badges in the halls to monitor
background scatter.
What if she were to suddenly develop cancer that was unrelated to the environment she
was shadowing in. The fact that you cannot give anyone under 18 a
film badge whether they are employed there or not puts that
facility in a precarious legal
situation.
Furthermore, the state radiation regulatory has very strict guidlines on who is allowed
in these areas in that film badges must be worn,otherwise it is a $1500.00 fine per incident.
The state radiation regulatory has the power and authority to shut down on the spot
all departments that use ionizing
radiation for infractions and can
issue $10,000 fines on the spot per
violation. Imagine a hospital that has just had their cat scan dept
shut down. If it were a typical level one facility, they lose their level one status and all emergency patients would have to
be shipped to other facilities at
that hospitals expense.
Even Osha has guidelines on safe
practices as well as the ncrp. This
behavior would not be allowed and I
assure you reporting this to the
Indiana radiation regulatory agency
would result in very negative consequences for the facility you
visited.
Keep in my this is about safety for high school kids at this juncture,not modesty. Are the parents of these children aware of the environment they are shadowing.
The only way someone under 18
can be monitored by a film badge
is an unborn child. A pregnant x-ray worker who has two film badges,
one for her and one for the unborn child if she so desires.


PT

MER said...

I disagree somewhat with a recent post of yours, PT -- when you write about what it boils down to. Although those agencies should be contacted, it doesn't boil down to them. Whether these kinds of modesty violations happen regularly, boils down to the ambiance or culture of any particular hospital, or even a department within a hospital, or even a floor within a hospital. The department head or supervisor either looks out for patient modesty or doesn't. The floor charge nurse either keeps an eye on it or doesn't. Those in charge send messages about how important modesty is, either overt or implied. If it's an important issue to their supervisor, employees will pick up on it. They'll get the message. Problem is, you won't find "patient modesty" listed on most/any survey or scale or evaluation forms for hospitals. There's no real overseeing policy or person or department. Supervisors and employees are not typically evaluated on this issue. No one comes down to a floor, walks around on a regular basis, and evaluates issues like patient modesty. If everyone's in charge, no one's in charge. Some modesty violations are so outrageous, like the one in Art Stump's book, that the complaint needs to go right to the top, or even to court. There is such a word as obtuse. When obtuse behavior is tolerated within a hospital setting, it will do no good to talk with the "obtuser." The behavior has probably been allowed to become habit, and because no one has cared to chastise or correct the "obtuser," he or she probably thinks nothing of it.

Joel Sherman said...

PT, I don't know whether your comments on radiation badges and minors are technically correct or not. They may be. The book is not clear as to whether the high school observer was there when the actual radiation treatments were in progress. In fact the author says he froze and remembers little else that day. My guess is she wasn't, but the damage was already done.
However if your interpretation is correct, it is never enforced anywhere. Remember that many people have reason to go in and out of these rooms who are not part of the x-ray team. This may include transport aides and various other assistants, none of whom ever have radiation badges if they don't work there regularly.
So I doubt that the hospital would be in anymore trouble for that if it occurred.

artstump said...

Since the book My Angels Are Come is the focus of this patient privacy thread, I feel that I should mention a typo correction just made to the book for those of you who have already read it. The correction was prompted by a contributor’s comment on this blog, one that I found a little confusing. It’s a small thing, perhaps, but it does make a difference in how the passage reads. Indeed, I was wearing street clothing in chapter 38 as I passed through the social gathering in the Patients’ Waiting room, not a hospital gown as a careful reading of the pre-corrected version might have it. On page 285, line 9 the word “were” has been corrected to “was.” Sorry for the misstep, and thank you for catching it.

artstump said...

I would also like to add a couple of thoughts about what I see as the essence of privacy violation. In chapter 39 of My Angels Are Come I explore the idea of privacy violation as “unauthorized intrusion,” noting that Webster defines privacy itself as “freedom from unauthorized intrusion.” Real-world privacy violations, as opposed to those involving digital records systems, are generally occurrences of unauthorized intrusion: key word, “unauthorized.”

In the process of receiving medical treatment, the required exposure of one’s body can be an uncomfortable experience for patients, but not necessarily a degrading one. The particulars of many medical procedures require that patients endure varying degrees of modesty discomfort, and most patients know and accept this.

The sensitivity and respect shown by the caregiving staff in such circumstances can demonstrate that the staff is aware of the patient’s discomfort and is making every effort to minimize it. In a give-and-take of ongoing respect, each side in the caregiving procedure acknowledges and mutually affirms the importance of patient dignity and worth. Consequently, although compromised modesty may result in momentary discomfort for the patient, that discomfort is understood and accepted by the patient as a necessary part of the medical care being provided.

That scenario is all well and good, but it is quite different from an instance of outright privacy violation. In chapter 13 of My Angels Are Come I recount an especially difficult experience that I had with the invasion of my personal privacy during a particular radiation treatment session. The most deeply troubling aspect of that experience, however, was not an issue of nakedness or compromised modesty per se – although that clearly set the stage – rather it was the institution’s exercise of its overwhelming prerogative of self-interest. That’s what enabled such a breach of privacy in the first place.

I am by nature a very solitary and cautious person, and yet the utter dependency occasioned by my cancer illness allowed me to take every bit of trust available to me and vest it in a group of total strangers that I had only just met: the members of my caregiving team at Memorial Hospital. Early on in a move that totally surprised me, I willingly and freely delivered myself into their nurturing hands – heart and soul, trust unconditional.

However, in the course of my routine radiation treatment on the afternoon of January 13, 2004, it became apparent to me that something more than therapy was going on, that I was in fact being put on display by the Hospital as a kind of sideshow for one of its employee recruitment programs. When that cold realization suddenly hit me, I pretty much lost it. Afterwards I was left with a lingering and debilitating sense of betrayal. I’d seen first hand the real value that the Hospital placed on my dignity and on my worth, and I was saddened beyond words.

All that to say that violations of patient privacy are not simply discrete events that affect people only in the moment. They almost always have consequences for patients that are unpleasant and prolonged – whether or not anyone ever hears about them – and they can leave a trail of emotional debris in their wake.

I believe that in caregiving settings the guardianship of patient privacy is in every respect the guardianship of patient trust. And in the end, trust is the deepest part of who we are, clearly the deepest part of who we are as patients. In the book I characterize the incident of January 13 as “devastating,” and to this day I believe that “devastating” is the most fitting word to describe the aftermath of my own experience with privacy violation.

artstump said...

IN RESPONSE TO OTHER POSTS:

To Anonymous from June 27, 2009

I was recently asked that question in an interview with PageOneLit.com and responded as follows:

“My Angels Are Come captures perfectly how I felt about my caregivers in cancer treatment. I’ve had my share of medical care over my lifetime, as has everyone, but I was overwhelmed by the compassion and kind attention shown by this extraordinary group of people. Whether I was brought to them or they to me, I do not know. What I do know is that they attended me with the devotion and sensitivity of angels. To this day I must take strong exception to the host hospital’s flawed privacy practices that so negatively impacted me, but the caregivers themselves were nothing short of magnificent.”

To your question about a spouse, I explain in the book that I have no spouse, but that my writing to my best friend about my difficulties helped to keep things together. It was her unflagging encouragement and support that enabled me to write the book.

To Joel Sherman from June 28, 2009

In my post above I’ve addressed most of your questions, and that was before I’d seen your questions. As far as the point at which a privacy violation becomes something legally actionably, I frankly don’t know, but I see obstacle after obstacle in the way, all having to do with the quagmire of subjectivity that surrounds everything. Makes me tired to think about it.

I would add this though, anecdotally, from a surgery that I had a couple of years back. I was in a double room with a drawn curtain separating the beds. I asked to have my Foley catheter removed so that I could be getting up and around more. A nurse in training (a fact that she herself explained) came in and removed the catheter. Now, from her friendly play-by-play chatter during the procedure I could imagine that it was no secret to the bed next to me what she was doing. Was that a privacy violation?

When she finished with me she stepped around the curtain and greeted that patient, announcing openly to him that she had just done for me what she had done for him that morning. Now the other patient and I both knew more than we wanted about each other’s medical business. Was that a privacy violation? She’s a nurse, sorta, but he and I are civilians. Does that matter? Whether or not there are legally identifiable lines of privacy violation, I don’t know, but I think we are quickly left with Justice Potter Stewart’s famous quip, “I know it when I see it .” And that makes me tired again.

I got the impression from this student nurse that she seemed not to have even considered the possibility that she could be violating a patient’s privacy, and I have to wonder when in nursing school, employment orientation, or on the job training do healthcare workers and professionals learn about patient privacy rights? And the simple answer is probably not until they are forced to.

To MER from June 29, 2009

I pretty much agree with your response to PT’s comment. We can say that every organization is different, and that’s certainly the case. But bureaucracies are set up to dispense with as much flack and busywork as possible at the lowest levels possible, without calling the organization and its leadership to task. The more layers you have, the more wiggle room the organization’s top echelons enjoy and the more likely it is that complainants will simply run out of steam and abandon their cause.

Joel Sherman said...

Thanks for your responses Art. Yes I did misread chapter 38. One sentence does indeed suggest that you were dressed, but I assumed otherwise due to the chapter's focus on hospital gowns in the patient waiting room. Of course it was still a privacy violation.
I very much agree with your main focus that most patients, though not all, can accept that their modesty may need to be sacrificed in necessary situations. Most of your treatments fall under that category. Most of us accept that without reservation as long as one is treated with respect by caring personnel. But when the hospital crosses the line, violating your privacy, by treating you not as an individual but as a means of self promoting the hospital, it becomes a different story. Your modesty is being violated not for your benefit, but for the hospitals. The only reasonable response to that is anger.
Your anecdote about the student nurse taking care of you in a semiprivate room is a common violation. I'm sure the nurse had no idea she was violating your privacy. She just wasn't trained to take it into account. I don't see it as a serious violation; certainly many roommates talk about their problems to each other, but the nurse had no right to assume it. You would be correct mentioning it to her, but most patients don't want to cause trouble or hard feelings over relatively minor incidents. Overheard conversations can be the cause of serious violations and lawsuits in hospitals.
Only a lawyer can tell you what privacy violations are actionable in your state. No federal law really applies and states all have differing statutes. Most do allow for a course of action. But your complaints to JCAHO and state agencies are very important even though the hospital will likely have no immediate penalty.

Anonymous said...

If you are assigned to an area such
as nuclear medicine,cardiac cath,
special procedures and radiation
oncology then you must be assigned a film badge. Anyone under 18 cannot be assigned a film badge.
Even in surgery everyone is assigned a film badge. Many patients are radioactive for a
short time from the isotopes induced,their urine and sweat
will be radioactive.They might be given radioactive seed implants in the prostate. Now if you are a clerk assigned to those areas
that would be a different matter.
Keep in mind much equipment leaks
from poor collimination. I spoke
with a friend who was once the head
of a radiation state regulatory and
he said that facility is treading
on dangerous ground by allowing
high schoolers to shadow in these
areas. Each area I mentioned has
film badges in the halls of these facilities to look for radiation leaks.
Anyone who provides patient care
from physicians on down to cna's
are required to respect a patients
privacy. One of the oaths of hippocrates states" I will respect
the privacy of my patients."
Hippocrates wrote that over
2000 years ago and people swear to
that oath,I didn't write it. It
is a valid complaint to the state boards of nursing if a nurse dosen't provide privacy to a patient during a procedure. The
presence of the shadower is a hippa
violation as she knew of his name
when she was not involved in mr.Stumps care.
Reps that make their presence in
orthopeadic surgery cares are not
allowed to know the name of the patient. Usually, high school
shadowers are approved by the
chief nursing officer and as such know very little about radiation oncology. Fact of the matter is
cno's have very little knowledge
of departments outside of nursing
and often sit in meetings all day
that are often financial related.
I'd be willing to bet money that
the cno of that facility had no idea of these shadowers presence
in patient care areas.
In conclusion, radiation state
regulatory agencies follow up on
every anonymous complaint. I suspect that the patient was visiting the oncology department
as an outpatient in which case you
might be met by 5 people at most.
The secretary, the radiation oncologist,maybe the radiation physicist but not always and possibly a dosimetrist. The radiation theraspist will always
be there with the patient and he/she is ultimately responsible
for the care and privacy of the patient.


PT

artstump said...

IN RESPONSE TO OTHER POSTS:

To PT from June 29, 2009

Thank you for the helpful overview of radiation safety protocols, and the mention of the possibility that radioactive seeds could be carried by some of the patients in treatment. I have no way of knowing whether any or all of the protocols you mentioned were observed; I can only say that in the situations described in the book there was no radioactive material as such involved. The linear accelerator machines used in therapy generate their radiation on the spot and have no stores of radioactive material lying around, or so I was told.

The concern that remains and that is the focus of the privacy matters discussed in My Angels Are Come is why anyone other than the immediate members of my caregiving therapy team would be present during any of my medical procedures, absent my explicit permission that they be allowed to attend.

With the incident in question from the book we have the presence in one of my radiation treatment sessions of a teenager, a female high-school student, most likely not yet old enough to form a legally binding agreement with the Hospital for something even as simple as honoring “confidentiality.” Parental signatures could okay her participation as far as the Hospital’s HR department was concerned, but who was it that was representing my interest, who was guarding my privacy?

As to the matter of identity disclosures triggering HIPAA sanctions, I’ve raised that issue in various quarters (including with my lawyer) and have found that, practically speaking, HIPAA regulations were designed to target data storage and data transfer operations and were not intended to govern face-to-face privacy protocols. Parenthetically, until the California case this year HIPAA was essentially a dog without any teeth.

art stump

artstump said...

I’d like to focus for a bit on a far more insidious practice at work than what is being discussed. It’s insidious because it’s so ubiquitous and therefore not easily seen. I would ask the members of this blog who have the book My Angels Are Come to reread chapter 15 and to pay special attention to the inset titled “Ethical Hubris.”

I suspect that asking permissions for privacy exceptions from patients who are about to receive life-saving therapy is a common, if coercive, policy widely employed in hospital HR departments across the country. And how often do you suppose these requests are turned down? If you’re the patient, you’re desperately sick, you’re scared, and you’re totally dependent on those standing over you to keep you alive. How do you say “No” to anything asked of you in a circumstance like that?

I discussed this matter in my recent PageOneLit interview, and I’ll try to post an excerpt here tomorrow or the next day for your thoughts. I think it’s worth talking about.

art stump

Anonymous said...

Mer

Essentially, what I meant was
this. It is not the jobs of ceo's and Cno's to insure your privacy
and standards of care are met.
Their job is to ensure the financial strength of the facility
as well as the ongoing leadership
needed for its success. True,often
patient complaints are sent their
way and those complaints are sent
to the various managers, and sometimes in the trash. In the big
picture it helps a little but as I
said,it really boils down to the
nurses and technicians to insure
your privacy and standards of care.
When those standards are not met,
then the respective regulatory
agencies must be enlisted by the
patient and that I believe is where
our strength lies.


PT

MER said...

Art:

This is where your court case could set precedent. It would finally move personal privacy and modesty right into the HIPAA arena and maybe give it some teeth. Your main concern here is extremely valid -- who is looking out for patient rights in hospitals? The answer you'll probably get is that everyone is. That may be the ideal, but as we all know, it just isn't happening. As I said before, if everyone is in charge, no one is in charge. That's why patients need advocates while they are in the hospital, someone who can be with them. Recently, I approached one hospital that's part of a larger chain. I asked to speak to the patient advocate. I couldn't believe it when they said they didn't have a patient advocate. Apparently, they just deal with complaints. Who deals with complaints? Whoever gets one.

This is the kind of management system we're often dealing with. You complain to someone who has absolutely no clout in the system. He or she passes your complaint onto someone else who has now power. Eventually, your complaint just gets buried in a pile somewhere. This happens unless you make sure your complaint gets into the hands of several people, including a few who do have authority. When that happens, unfortunately the reaction has more to do with fear that the complaint can't be hidden than it does with really investigating what happened and trying to solve the problem to satisfy all parties. Real customer service is a skill that's is poorly administered within hospitals. I don't think it's really understood at the higher administrative levels. And by the time the admin message gets down to the floor workers, they resent the entire implication that patients are customers. I will admit there is a line here. Hospitals aren't hotels, and patients need to realize that. Nurses aren't maids and cooks and gofers. On the other hand, patients are paying for a service and are actually "living" for a time in a space that they deserve to have some control over. And many services in hospitals are similar to hotel services. Privacy rules that govern us outside the hospital must have sufficient sway within hospitals as well.

Joel Sherman said...

PT, it's a little more complicated than that. I checked with a knowledgeable physician. Not all states enforce radiation safety protocols. If they don't, the responsibility is that of the Nuclear Regulatory Commission, a federal agency. I have no idea what Indiana does. Of course the mere fact of regulation doesn't mean it's enforced. The easiest way to pass radiation badge checks is to not wear the badges. No one necessarily checks that.
But yes Art, if you look at my HIPAA thread you'll see that the thrust of HIPAA is on information transfer violations, not personal violations which are covered only vaguely. You generally have to rely on state laws to sue for privacy violations.

artstump said...

I was asked in a recent interview about what I hoped to achieve by writing MY ANGELS ARE COME. I answered as follows, paraphrased:

I’ve tried to share with my readers a wealth of information about my cancer experience. At the same time, I am well aware how a diagnosis of cancer can stand a person’s world on its head and foster a sense of helplessness. For that reason, I think the greatest hope that I have for my readers is that they find in My Angels Are Come a more empowering perspective on who they are or might be as cancer patients.

To become a cancer patient urgently in need of treatment is to suddenly be assigned an utterly dependent station in the social order – not a helpless station, but a dependent one. The patient’s awareness of that dependency and of the life-saving cancer therapy that the host medical facility (hospital) has the ability to provide can result in a perilously imbalanced relationship between institution and patient, an enormous inequity of power. That, in turn, can create an intimidating treatment environment for the patient, a subtle form of tacit coercion.

I believe that within that environment it is nearly certain that any accommodation sought from the patient – especially when that accommodation is requested at the point of treatment – will be granted because of the trusting and dependent state of mind of the patient at that moment. And I believe that chief among the concessions asked of patients in that circumstance is the surrender of the right to privacy during treatment. Sensitive and compassionate caregivers know this from the heart and take great care not to exploit their patient’s vulnerability. Institutions, on the other hand, maybe not so much.

It is my sincere hope that those who read My Angels Are Come will have a greater appreciation of this aspect of the patient-institution relationship. It is my sincere hope that, should they or their loved ones ever need cancer treatment therapy, they will be better prepared to express freely and without reservation their true feelings about any accommodation asked of them.

art stump

artstump said...

I’d like to focus for a bit on a far more insidious practice at work than what is being discussed. It’s insidious because it’s so ubiquitous and therefore not easily seen. I would ask the members of this blog who have the book My Angels Are Come to reread chapter 15 and to pay special attention to the inset titled “Ethical Hubris.”

I suspect that asking permissions for privacy exceptions from patients who are about to receive life-saving therapy is a common, if coercive, policy widely employed in hospital HR departments across the country. And how often do you suppose these requests are turned down? If you’re the patient, you’re desperately sick, you’re scared, and you’re totally dependent on those standing over you to keep you alive. How do you say “No” to anything asked of you in a circumstance like that?

I discussed this matter in my recent PageOneLit interview, and I’ll try to post an excerpt here tomorrow or the next day for your thoughts. I think it’s worth talking about.

art stump

artstump said...

SEQUENCE CORRECTION

My apologies for somehow managing to feed posts out of order, but the “I’d like to focus…” post from June 30 precedes the post above it, which is also from June 30. Sorry for any confusion.

art stump

MER said...

I agree with you, Art. But this is where "informed consent" needs to be more strictly defined and adhered to. When a patient is frightened, vulnerable, fearful that they won't get treatment if they refuse a request, naked, in pain -- these does not represent conditions necessary for informed consent. I would suggest that a patient who granted less privacy when asked under these conditions, could later successfully claim that they were not fully in a state of mind where they could make an informed choice. That would be an interesting court case.

Your right about "Ethical Hubris." There are such things as rhetorical questions. In cases like the one you describe, the patient isn't really being asked a question. The patient isn't really being asked whether he or she agrees to less privacy. The question is really a statement, more like, "You wouldn't really mind this, would you? After all, we're in charge and this is what we want and you'd really better agree with us." This is ethical hubris -- asking rhetorical questions, not really wanting an answer because you're not really asking a question.

Anonymous said...

Mr Stump

I hope as well as all of us
on this site that you are in good
health. It is an unfortunate ordeal
what you went through in more ways than one. Many of us have endured
what you went through and then some and it seems that if you are a male patient its all too familiar. When ones privacy is violated it is in reality something
that cannot be repaired,but only
hopefully for the next person.
It causes anger,resentment and
distrust towards the medical industry. What I have done is to
try to provide you with some tools
to dispel some of that grief if you
feel in your mind that the violations toward you were in complete disregard for you as a
person. I have no way of knowing that whether I read your book or
not. I didn't percieve what you saw
or felt, however, I have experienced the worst as it could
get on many occasions as a patient.
If we reversed the roles and the
high schooler was male and the patient was a female what would be the result. Would they take her concerns more or less than yours?
There are 24 states that participate in osha safety plans and the site for Indiana is
www.in.gov/dol/iosha.htm or you
can e-mail them at teen safety
at childlabor@dol.in.gov
The Indiana State Board of Health/Radiology health
2 North Meridian Street
Indianapolis,Indiana 46204
They oversee and liscense radiation therapists and take
complaints as well. And finally,
The NRC located at 11555 Rockwell
Pike
Rockville Md 20852
This governmental agency investigates consumer complaints
for any facility that uses ionizing radiation.


PT

Joel Sherman said...

Helpful post, PT.
You're right Art that section of chapter 15 on ethical hubris is worth rereading. It's been 6 months since I've read your book and I didn't remember it fully.
It raises certain questions. Memorial Hospital's practice was to have the radiation therapists recruit patients for the shadow program. Denise didn't do this for you, just assumed it was OK. That's almost like assuming it's OK to amputate a leg without asking. What happened to Denise? Was she disciplined or fired? The answer will give you some idea of what the hospital really thought about the incident.
But I agree that you should have been 'recruited' at a time when you were under no active treatment, fully dressed, and relaxed. Most patients would say yes to extra medical people being in the room for educational purposes. Not many patients would say yes to a high school kid watching them while they were totally exposed. I wonder what they usually did, or was how they treated you the norm? Does the hospital still have the shadowing program? If you ever come to a formal settlement with Memorial Hospital, I hope you will make them spell out their amended policies.

MER said...

PT wrote: "If we reversed the roles and the high schooler was male and the patient was a female what would be the result."

Depending upon your point of view, that reversed situation would ever happen, or it would be extremely rare. Do you think a male adult tech would even consider bringing a high school boy into view a female during an intimate procedure. It would probably mean his job and a lawsuit. And it this case, I can't imagine the other techs trying to stop him. And this is one of the main points of our discussion here. Why does this female tech, Denise, feel so emboldened, so entitled to bring in a high school girl to view this man in such a personal situation? That's the psychology, the sociology behind this double standard. I'm not saying a male tech would absolutely never do this with a male high school student, but the odds are slim, and the repercussions to that tech's personal career would be much different that it would be for a female tech.

swf said...

"Most patients would say yes to extra medical people being in the room for educational purposes."
I would caution against this assumption. Most people that I have spoken with would not welcome any extra people lurking around, especially during a particularly intimate situation. Perhaps the medical field assumes this liberty, but it should not be a predominated theory. Don't forget that as we choose our careers, it is afterall our choice. This does not mean that one person's entitlement beliefs as to how they earn a living should automatically be forced on another person's body.

artstump said...

To Joel, MER,

In the event you missed it, there is a footnote in chapter 15, pages 111–112, that cites the great system used at the Indiana University Hospital in Indianapolis. The hospital is closely allied with the University’s medical school and is clearly an authentic “teaching” hospital. When you check in to the IU Hospital, you’re already aware that attending physicians will often have medical students in tow. But more than that, during the extensive admissions process you are given the opportunity to review at length the range of privacy intrusions that you might expect while a patient in the hospital and are given virtually line-item veto over most of them.

I was admitted to that hospital in 2005 for a hip replacement and took my time reading through and marking up the considerable paperwork that was put in front of me. The lady handling my admission waited for the 15-20 minutes that it took for me to do this, and when I’d finished, she made me copies of everything.

By itself, of course, this doesn’t preclude privacy infractions, but it does put the hospital on record as to the limits of acceptable privacy intrusions. If a prospective patient finds those limits unacceptable, he can walk away from the admissions process and choose a different hospital. The important thing is that the process is designed expressly to allow the patient to make decisions of that sort up front – i.e., whether or not to participate in programs not directly involved with his healthcare – and to make those choices while he has the capacity to do so, well before he falls prey to the burden of overwhelming dependency on the hospital and its resources.

art stump

Joel Sherman said...

swf, I don't think what I said was an assumption, but rather reflects general experience. I'm sure Dr Bernstein could give some statistics for his experience. The reasons people accede to the request are varied and many undoubtedly feel under pressure to consent or that they don't have any practical choice. But everyone should be offered a choice. Of course the responses to the request would vary with the type of exam involved.
Art, IU Hospital is unusual with that permission form and to be lauded. Most hospitals prefer dealing with generalities. Is the form available online by any chance? It would be nice to have it as a model. I wonder how well they're able to follow it after committing themselves to it.

MER said...

Joel: I don't question what you've experienced in this regard. I do question the use of the word "accept." You may observe a patient "going along" with limited privacy, but to know whether that is acceptance, toleration, or forced, you'd have to ask the patient and/or give a choice. I do think that some medical professionals assume that just because a patient goes along with limited privacy without being asked, the patient accepts it. This is a false assumption, and typical of the problems patients face.

Joel Sherman said...

There's no data available MER.
I've put the question to Dr B as he's in a better position to answer.

Anonymous said...

Every teaching facility I've worked
at gave the patient the option of
non-teach. If you as a patient chose the option of non-teach it
is in big letters on your chart.
Quite coincidentally,mr stump but
were you at the IU hospital located
on the IU-PURDUE campus at Indianapolis. It should be next door to a childrens hospital and
just adjacent to the county hospital,Wishard memorial. I worked
there many years ago and am very familiar with their privacy forms
which I should say have been the
rule for many years.


PT

Maurice Bernstein, M.D. said...

Joel, I am reproducing here what I wrote you on my blog ..Maurice.



Joel, the two hospitals in which I participate, one (Los Angeles County-University of Southern California Medical Center) is a county hospital and generally none of the patients are private physician patients. The other teaching hospital (University Hospital) has primarily a population served by private physicians. In both hospitals, there is virtually no rejection of student physical examination. I think I mentioned this before on these threads, students come to me to request another patient when they find their assigned patient sleeping and wish not to disturb the patient. If a patient is awake and does reject the student it is explained by the patient for reasons not apparently related to modesty but to "wanting to be left alone", repeated previous student examinations or a common excuse "I'm packing my clothes to get discharged". Again, whether these responses are truly not related to physical modesty, I can't be 100 percent sure. But these are my observations. Again, virtually all patients when asked by the student who examined them for permission to have a review of a specific physical finding by a group of 5 other students usually agree. However, before the student goes to ask, we all make an evaluation of whether the ill or tired patient would tolerate further poking and examination. These observations are the same in both hospitals. By the way, all patients are informed that their decisions are voluntary. ..Maurice.

Joel Sherman said...

Thanks Maurice,
Yes it's been my experience that the large majority of patients are willing to accept medical students and others with a bonafide reason for being present. Most people understand that training and education is necessary for medical personnel. That is not to suggest that there is anything wrong with refusing. It's a personal decision.
But I wouldn't consider a high school student 'shadowing' an intimate procedure to have a bonafide reason to be present. In Art's situation I would have refused if I had been given the opportunity.

artstump said...

To Joel…

I didn’t mean to imply that the IU Hospital’s admissions forms and materials were of a condensed, multiple-choice variety. I remember them being more like thorough contracts that were right to the point, and I remember exing out and initialing many sections that caused me concern for one reason or another. That may not rise to level of “consumer friendly” for some people, but for me it was an opportunity to come to an understanding with the institution about what would be allowed to happen to me once I was admitted.

Whether and how my file was tagged and followed based on my admissions documents, I don’t know. But for me the critical questions of privacy intrusion had been asked and answered before I unpacked my toothbrush. And, surprisingly, that by itself raised my expectation for the quality of care that I would receive in the hospital generally.

I don’t know if their admissions paperwork is available online, but I would guess that the hospital’s P/R department would respond kindly to an invitation from a blogmaster and might even wish to contribute.

To PT…

I was in the Indiana University Hospital at 550 University Blvd., Indianapolis. Beyond that I couldn’t say. I don’t remember the mention of Purdue there at all.

art stump

MER said...

One of the keys to all this is asking the patient's permission. Within the context of what we're discussing regarding Art's situation, he wasn't asked. But beyond that, the question wasn't even appropriate with a high school student involved.

I would probably agree with both Drs. Bernstein and Sherman. If approached ahead of time, with civility and sensitivity, most patients will agree to student doctors and/or nurses present.

But how typical is the procedure for obtaining patient consent Dr. Bernstein described for his hospital in all teaching hospitals?

Anonymous said...

The nearest hospital to me is one which has student everything. I have read teh copy of the admissions paper given to relatives of mine... the whole thing is in small print...and I have not found where you can opt out...
I will be moving to a smaller community soon... the town has a nursing school and they use the hospital for training.. I do not know what their admissions papers say... I was told that one day a year they have students from the surrounding high schools (if they want to) spend a half day there..I am not sure just how they handle it.
leemac

Anonymous said...

From my experience, I’d have to disagree with Dr.Bernstein and others about informing a patient ahead of time before including students. I’ve spoke to people who have received care at a near by teaching hospital and never was the patient asked ahead of time to be examined. Most cases, the students just show up with the attending physician and then tell the patient that they’ll be performing the examination. The attending should ask the patient first before multiple students are in the room. I also feel it should be an option on the consent form. This really depends on how the question is asked and when. If you truly ask and give every patient the option to say no, I think the scale would tip but until then, none of us really know. Jimmy

swf said...

With regard to Mr. Stump:
Exactly how long (if ever) before your facility realized that the surprise attack they perpetrated on you was a heinous and egregious act against your body and spirit?

Joel Sherman said...

Art said
I don’t know if their admissions paperwork is available online, but I would guess that the hospital’s P/R department would respond kindly to an invitation from a blogmaster and might even wish to contribute.

I doubt it Art. This blog is not particularly an ally of corporate cultures or hospitals in general. I have purposely not named the hospitals I attend at as I suspect they would have concerns. At the very least, someone with authority would have to approve it and it's just not worth the trouble.

A passing thought to all, if you're asked whether a 'student' can observe, you might want to be sure you know what kind of student they're talking about. Obviously the term student could encompass a medical student, a therapist trainee, or even a high school student. I'm not saying hospitals do that on purpose, but who knows, the person asking might take the easiest path to get consent.

MER said...

Joel:

This "secret" hospital culture is in part what erodes patient trust. Why would these admission papers be so secret? You'd think we were dealing with the CIA. Why would they not want patients to know the choices they have when the enter a hospital? Why would the hospitals you work with have concerns about this blog? Why is it not worth the trouble to get permission to share basic information from someone in authority at a hospital?

You're so right about making sure you know what the hospital would mean by "student," and patients need to be alert to this. But why is this kind of quest the patient's? Ill patients already have a stressful journey to undertake without having to deconstruct all the hidden rules and secrets and vague policies within the hospital culture.

Why? Why? Why? These kinds of questions need to be addressed.

When hospitals appear to keep this kind of information secret, they create a wall between them and their patients. They make it seem like it's an "us" vs. "them" situation. And it some ways, that's precisely what it turns into. The patient becomes not only someone that you help and cure, but also someone to beware of, someone who can't be told all the truth about issues like the ones we're discussing on this blog.

I can see why hospitals want to be flexible with policies. It some cases it may be best for both them and the patient. But that doesn't mean they can't be open and honest. Most patients aren't stupid. If you treat them like intelligent human beings and tell them the truth of why you're doing what you're doing, they'll listen. It's about respect.

Is this standard for the corporate culture of hospitals today?

Joel Sherman said...

Just to amplify MER, I don't think that hospitals are any worse in this regard than other businesses or corporations. Every company tries to 'sell itself' by putting problems in the best light. Compare hospitals with big tobacco and many others.
In the highly regulated and litigatious health industry, they surely have valid concerns. Doesn't make it right, but I understand why they're not as forthright as we'd all like.

Anonymous said...

My Privacy is just as important as
any womans privacy and not any less. All men are created equal as
Thomas Jefferson so proclaimed.
Initally,make it known that you want your privacy respected and
above all ask who will be present
during the procedure. Make it known
that you prefer no students and no
observers. Its been my experience
that when you allow female providers to perform any personal
procedures you can forget about
your privacy. It won't be safeguarded or respected as far as observers, curtains and doors are concerned.
You have the right on deciding
who does what and the buck stops there. I'll complain if I even
think thats where the situation
is headed. At that point I ask for the charge nurse,a patient advocate to the point they are sorry I visited their facility.I'm paying for it!It's my hamburger and it gets cooked how I like it!Previously I mentioned that in Mr Stumps case had the roles been reversed what would be the outcome. " What if the patient were female and the highschooler
were male". Why should the results
be any different? Is that to say
men's privacy is a matter that dosen't deserve attention.
I say the latter is true, but
percieved as well. Those things won't happen if YOU don't allow
them to happen.


PT

artstump said...

To swf of July 2, 2009

In chapter 14, four days after the incident, I informed nurse Rachael of what had happened and fell apart doing so. Verbalizing my distress to her was one of the more remarkable experiences of my life. I'd been agonizing so about what had happened in the treatment room and about what had almost happened. Finally speaking of it to Rachael, that wonderful listening soul, was like stepping into another realm. For me it was pure relief.

In chapter 15, the very next day, I heard directly from Dr. Somers: his reaction, his sincere apology, and his immediate move to suspend the practice. But I can’t say whether the “facility” ever actually got it or indeed is capable of getting it.

art stump

artstump said...

With respect to student interlopers…

Having gone through a difficult episode of privacy violation, does one become a changed person? Does one behave differently when it comes to healthcare matters? In my case the answers are clearly “yes” and “yes.” Unfortunately, the cancer experience itself remains a hopelessly confounding piece of the puzzle whenever I try to understand the impact of life’s events. But all in all, I think that I now have a new directness about privacy rights, as the following anecdote might illustrate.

About a year after my radiation therapy had run its course, I developed a huge, very painful lump on my right thigh, high up in the crotch. To me, almost any anomaly showing up on my body shrieked of the possibility of metastasizing cancer and received my immediate attention. I quickly got in to see one of the doctors at my GP’s office.

When the doctor, my favorite in the office, examined me, he quickly calmed my fears, telling me that the lump was definitely not cancer. He added, however, that it was indeed a nasty cyst and would need to be lanced and cleaned out immediately. From the location of the cyst there was obviously no room for modesty preservation in any of this, and I was okay with that. I just wanted it fixed.

The doctor exited the room to get the materials that he would need to do the job, and I was left sitting on the exam table with a towel covering me. When he returned moments later, a young woman accompanied him. He introduced her as a third year medical student doing her “rotation” with their office. As we cordially introduced ourselves to one another, he discreetly left the exam room again, presumably to tend to yet more preparations.

In his absence the woman made her case. She told me that her goal was to specialize in pediatric medicine and that she loved being around family practices like this one. She was there to observe, she said, taking a seat squarely in front of me. She’d clearly been briefed by the doctor on my situation and asked a number of questions about the cyst.

After a bit more small talk she announced, “Well, would you like to show me the cyst now, or would you rather wait until I return with the doctor.” She was certainly gracious enough with her ultimatum, but the presumptuousness of her statement set me at odds with her. Perhaps I was carrying too much emotional baggage at the time. In any case, I responded just as graciously, reasserting the privacy privilege that she had so casually dismissed with her well-practiced speech.

“No, I don’t believe I’d like to show you my cyst now,” I answered, “and when the doctor comes back, I’d rather you not be with him.”

She paused, staring blankly for a moment, then smiled and rose to leave. We exchanged more niceties and more small talk, and I wished her every success with her future practice. Another handshake and she was gone. Minutes later the doctor returned to deal with my cyst and had a nurse at his side. Together they handled my problem just fine. And there was no mention of the medical student.

What I don’t know, of course, is whether I would I have reacted differently and been less assertive had the doctor told me that he thought my cancer had metastasized. I frankly think that I would have been more obliging of just about everything. The desperation and neediness of a life-threatening diagnosis can change everything about one’s priorities in life, and healthcare workers of every sort need to learn this. On the other hand, I have a strong hunch that caregivers who work with cancer patients know this already by heart.

art stump

Anonymous said...

Hi Art,

I am enjoying your comments on this issue. From my perspective as a patient who had cancer, I think its true how difficult it is to be both assertive of your privacy needs and at the same time trying to take in and be involved in the treatment decisions. To this day I am disappointed in myself that on a number of occasions I did't respond quickly when I got "we have seen this all before" or similar comments. In one case from a nurse and another from a doctor. (they were female and I am male).
Now I am much more assertive about these issues and would give an appropriate response.
The memory still annoys me though.

Chris

MER said...

Art:

Let me understand this: You were "left sitting on the exam table with a towel covering me." That's the situation you were in when a medical student you had never met arrived with the doctor. So, this is how you're introduced, naked, with a towel covering you, on the exam table, vulnerable.

Is this "informed consent?"

Why not introduce the medical student earlier when everybody's dressed? Why wait until the last minute when the patient is essentially powerless, lying naked on the exam table ready to get the procedure done?

I can only understand this kind of behavior in terms of efficiency. It's faster and easier for the doctor. What is this doctor teaching his medical student? I can also understand this behavior in terms of bad communication habits being passed on through the hidden curriculum.

Personally, I would be open to medical students working with my doctors, if, and only if, the introductions and case was made up front while we're all relaxed and dressed. If done the way Art describes it, I will say no and explain why.

Doctors Sherman and Bernstein -- what do you think of this method of asking "permission" of the patient for a student to work on him or her? Is this more or less standard?

Anonymous said...

Mer and Others

That is why I would request the forms upfront, ahead of time to avoid situations like what has been described here. When you’re already in that gown, you’re at their mercy and your think pattern isn’t the same. That is also why I feel no one can say that most patients don’t mind. You can’t clearly have that answer when the patient is on the provider’s terms. Like you said, change the way you get permission and see what the response is, I’d bet it would be different.

Art: I’ve enjoyed your comments on here as well. Thanks

Jimmy

Joel Sherman said...

I really can't give you a good answer MER. It may be that the doctor wasn't even trying to ask permission. He needed an assistant and asked the med student to help. Or alternatively it may have been his normal procedure to only ask the students to come in when he had something 'interesting' to show them. I don't think there are any specific guidelines, especially in a private office for the use of students. But it's been a long time since I've personally dealt with the issue.
But I agree with you that whatever his usual practice or motive, he handled it poorly. He should have asked permission to bring in a student, especially if she was going to examine Art independently. Typically a doctor doesn't ask permission to bring in a nursing assistant if he/she needs help for the procedure. If this doctor knew Art well, you would think he should have known that surprising him with a young female student would trigger an avalanche of negative feelings.
I too would be interested in Dr. B's opinion as he deals with med students daily and I don't.

artstump said...

About the cyst…

The doctor who treated me for the cyst was not my “assigned” doctor, but rather the one in the practice who seemed to inherit the cases where cutting was likely needed. Apparently the consensus in the office was that he was the best of the group with a scalpel.

In retrospect, I feel that his behavior actually emboldened me. No doubt one of his shared responsibilities in the practice was to make as many cases as possible available to the “rotating” med students. In that capacity he could have introduced me to the student that I encountered and proceeded matter-of-factly to show her my cyst as part of the preparatory ritual for my treatment. In that event it would have been far more difficult for me to have objected to her participation, since doing so would have amounted to an open repudiation of his treatment.

But in fact the doctor took a more nuanced approach. He made my visit available to the student without directly endorsing her role or facilitating her involvement. He was leaving it up to her and me to work out our treatment relationship.

Of course, there was still the tacit endorsement of her presence in the exam room, and the fact that she had been escorted in and introduced by the doctor. In doing so he had officially sanctioned her involvement in my treatment. But he went no further. In his ensuing absence it was left to me to raise my own boundaries as to the limits of her participation. And so I did.

Again, I believe that had the lump been a life-threatening development, my inclination might have taken a very different turn. My emotional dependency would have been magnitudes greater, and I might have been quick to curry favor with the doctor and his staff, agreeing to virtually anything put before me.

I believe that for seriously ill patients the reciprocity dynamic of situations like this is a very real hazard. And I believe that healthcare administrators, doctors serving as medical directors, and caregivers of every sort who care for the seriously ill need to learn about this kind of patient-caregiver interaction at some point in their education. Otherwise they run the risk of becoming an inadvertently coercive influence in their patients’ most vulnerable moments.

art stump

MER said...

Art: Your insight and wisdom is incredible. And you articulate it very well. I wonder if any studies have been done in this area. I wonder if this is taught in medical school, beyond a brief summary. What medical students need is patients like you coming into their classes and presenting a lecture. There should be entire classes in medical school run by patients with experiences like yours. I'd again like both Dr. B's and Dr. Sherman's response to this.
The connection you make between the seriousness of the patient's condition the patient's psychological dependence upon the medical team is essential to any reasonable concept of informed consent. I would argue patients in this vulnerable state, where they feel refusing advice may impact their treatment, may not be capable of informed consent.

Anonymous said...

The privacy violation that Mr Stump
experienced is commonplace in healthcare.There are over 7000
hospitals in america.With tens of thousands of physicians offices,
outpatient surgery centers as well
as medical imaging facilities one
can begin to appreciate how often
these things occur.
Although I believe privacy violations in physicians offices are rare,such violations in hospitals are frequent. Most of
these occur in the er,surgery and intensive care units. Those most
at risk are unconscious and vented,
as typical large medical centers may have as many as 9 to 12 types
of intensive care units.
Some examples of privacy violations I'm aware of are
nurses being invited to view the
genitals of patients when not assigned to that patient's care.
Patients typically get bed
baths at 4am and often anyone walks
through the curtain into these patients rooms without objections
from the nurse. Often unit clerks
will look through the curtain,
respiratory techs as well as other
nurses when they know the patient is recieving a bed bath.
Frequently, visitors to these units will get more than a eyeful
as nurses are not too concerned about the privacy of unconscious patients. The attitude is what they don't know won't hurt them,yet
when they are the patient expect the max as far as their privacy goes.
Another example I've seen
involved an unconscious male patient that had a ring piercing of his penis. The nurse assigned to his care invited the other nurses in the unit to view his
pierced penis,circus style.Privacy violations like this are very common in many intensive care units whereby most may all be female nurses.
One has to consider that when
female poviders are careless with
the privacies of their male patients what then is their mental
disposition towards these patients.
In other words does carelessness
equate to unprofessional thoughts
which in my mind if they tend to disrespect another persons privacy,
what else will they disrespect.


PT

artstump said...

Patient Privacy and Caregivers…

This forum focuses on issues of patient privacy in medical care. Much of the commentary that bloggers have posted here makes one wonder whether certain workers in the caregiving professions would be better off in another line of work, possibly one not requiring a “people orientation.” Caregivers often see themselves as skilled, trained professionals, and perhaps they are all of that. Yet some of them by their behavior demonstrate a seeming indifference to people.

That’s a major disconnect for me. I appreciate that some caregivers can become hardened to the distress and discomfort of others over time, and the argument is often made that such a reaction is a coping mechanism for the caregiver. Maybe so. But perhaps it’s equally plausible that many people who work in caregiving positions are there for the wrong reasons.

I believe that the most basic prerequisite for an effective caregiver is a deep-seated desire to be of help to others every day, to be involved face-to-face in making someone’s life better today. If that innate motivation is absent in the beginning, no amount of schooling or training will make up the deficiency that remains. Such students may find employment, don badges, and receive titles as caregivers of one sort or another, but in the end they will be little more than staffers doing a job.

My mother came of age in the Great Depression and was a lady tough as nails. In her later years her health was declining and life was becoming more of a daily challenge. Because congestive heart failure was one of her challenges, she would see her cardiologist with increasing frequency and I would accompany her.

On one occasion he asked her how she was doing, paging through her considerable file as he did so in order to review her latest lab results. She gave a quick nondescript answer, the kind of obligatory response that she was quick to utter in other doctor-patient consultations.

But her cardiologist was not that kind of doctor. He was deeply concerned about the person living in the body he was treating, and he made a point of never losing sight of that focus. His mind and his heart were right there with her and he wanted her to know that.

He stopped paging and raised his eyes to hers, “Yes, but how are you doing? How do you feel?”

She looked up then, her eyes meeting his, and after a moment whispered, “I feel like I’m falling apart.” And with that she broke down in tears.

He’d connected with her that day and he’d touched her proud heart. And she felt how very much he cared.

My mother died about a year or so later just shy of her 92nd birthday. I later made a point of telling her cardiologist how much his doctoring meant to her, that she always left his office feeling uplifted and valued, like she herself had been cared for and not just the body she occupied.

No doubt that cardiologist had learned countless medical skills and insights from his many years in med school and after, yet from his patients’ perspective one of his most prized traits was that he genuinely cared about people. It was simply part of his fabric.

That’s certainly how he affected me as I watched him care for my mother. Indeed, he was the doctor that I fled to for a second opinion in chapter 46 of My Angels Are Come, and he is now my cardiologist. More than that, he is in every sense of the word an extraordinary caregiver.

art stump

Joel Sherman said...

I agree Art. Empathy is a trait that can't be taught. Doctors enter medicine for all kinds of reasons, not always good ones.
But even the most empathic can be worn down over the years by time and financial pressures. I don't foresee that getting better anytime soon in today's medical climate.

MER said...

Art writes: "But in fact the doctor took a more nuanced approach. He made my visit available to the student without directly endorsing her role or facilitating her involvement. He was leaving it up to her and me to work out our treatment relationship."

I suppose we could call it a "nuanced" approach. To me it's more of the "game" playing or ritual aspects of medical treatment. Art -- you now knew or at least intuited the "rules" of the game because of your past experiences in the system. Problem is, people without that experience often don't know the "rules" of these rituals or games. They don't see themselves in a position of power, or in a position to negotiate. Some doctors just assume that patients know they have a choice or can negotiate at this point. Some doctors may realize the patient is in a weak position and thus the doctors have designed it this way so they can go about doing what they want to do the way they want to do it.

These kinds of games are played in all parts of society, but we usually know the rules. We learn them. Hospitals don't publish or communicate these rules to patients ahead of time. You have to figure out these rules as you go through the system for the first time. Or, you can read blogs like this to get a better idea the possible scenarios.

Some of what happens during or pre surgery (once you're out) or surgical prep is a ritual, but the patient is not often given the details -- especially regarding the gender of who will do what or what observers or visitors will be there.

There can be a huge communication gap between patient and doctor, patient and medical system. The patient can't assume you're even speaking the same language at times. You've got to make clear what your expectations are ahead of time, and make sure those expectations are understood.

Jill said...

You mention at the beginning that as a medical student you viewed an exposed teenage girl receiving radiation therapy.
You have no idea how damaging those sorts of encounters can be to patients.
My sister-in-law had hodgkins disease as a young woman and suffered that sort of privacy violation. It was only when she started to weep, that they left - leaving her trembling and highly distressed...she almost stopped her cancer therapy, preferring to die with some shred of dignity left...it was only when a retired female matron, a friend of the family and a powerful figure, challenged the hospital that "special care" was taken...
As a result of the invasion of her privacy she suffered depression and needed counselling for a few years...she felt suicidal at one point.
She was a very attractive, shy and reserved girl and had been sexually harassed by a male tutor at University before this incident. She felt as a young woman, the world was an ugly place and she wasn't sure she wanted to be part of it.
To this day, she still describes it as the worst experience of her life - lying there naked with a group of young men staring at her naked body.
She felt violated - like she'd been sexually assualted by every one of them. It was clear to her they were all enjoying the view and the power dynamic.
She felt at that point in her life, she needed to be strong to fight the cancer, but that experience made it difficult for her to cope and go on....
I believe many of these incidents cause post traumatic stress disorder and the trauma lasts a lifetime.
It's disappointing that medical students, doctors and others can't put themselves in the position of the patient - why they can't see or don't care that their presence is causing distress.
The hospital system is intimidating and only the bravest patients will speak up and protect their privacy. The rest will suffer the embarrassment and live with the consequences.

On another forum, it was mentioned that patients are often reduced to bodies or objects...we become dehumanized...that certainly seems to be the case when we're unconscious or feel unable to object.
I also think the system is made intimidating to make it as difficult as possible to object...put the patient on the spot and overwhelm him or her.

Most of us would feel embarrassed being exposed in surroundings beyond our control...but can you imagine a patient with a history of sexual abuse/assault finding herself naked and surrounded by male medical students?
Doctors don't know our backgrounds.
I firmly believe if a patient needs to be naked (and I suspect often nakedness is totally unnecessary - the system is just lazy,sloppy or people don't care) firm controls need to be in place so patients feel as comfortable as possible - the option of same sex personnel and a closed door policy - NO ONE permitted to wander in...
If that is too much to ask...the system is bad and needs changing.

Does a hospital have the right to expose us to anyone, without our permission? I don't think so...

If every patient treated badly made a formal complaint, spoke to the media, sued the hospital, refused further treatment etc then I'm sure the hospitals would have to take responsibility and change the "system"...
Sadly, it's only those actions that prompt fast action and change.
I think patients do all of us a favour, when they complain.
I read somewhere the shocking practice in the States of unauthorized pelvic exams on unconscious women was stopped because medical students refused to participate and reported the matter.
I was pleased to read that...that's a very good sign.
Personally, I believe when some medical students see privacy violations, they become desensitized and go on to think it's fine to treat patients that way. I think it also makes some doctors feel powerful...and that can lead to them taking advantage of their position.
If the teachers take the lead and impress upon students the importance of this issue, then I'm hopeful it will have a trickle down effect....

Joel Sherman said...

Thanks Jill. But I think I do know how damaging those encounters can be. That's what this whole thread is about. Read Art Stump's book to see how severely it can affect people.
The incident I described made an impression on me which I never forgot. But it was over 40 years ago and times were different. No student, intern or resident would have been able to challenge an attending physician easily in that era. I'm not even sure the poor girl saw us walk by. The room was dark except for the light on her so she might not have been able to see who was going by. I felt sorry for her; no young person should have to battle cancer. And the results weren't very good in those days.
But I'd guess that these scenes still happen, especially in radiotherapy where I believe skin exposure is needed. But there is no reason for the patient to be completely nude when only chest radiation is being given. I have been corresponding with a woman who is under active therapy for breast cancer. She too has received radiation like this but was only exposed from the waist up which is probably necessary. She was not troubled by this aspect of her care, but others would be.
I agree that it is up to all involved to be sensitive to patient needs and concerns. The patient has to be their own number one spokesperson, the first to challenge their care. But it is difficult. All personnel concerned in the care should also be willing to speak up.

artstump said...

To MER of July 8, Jill of July 9, and Joel of July 9 --

Great comments from all of you about privacy violations and their potentially devastating impact.

MER, I think you’re exactly right with your take on “the rules of the game” in medical care. Those who have run that gauntlet may be wiser or more resilient and assertive next time through, but maybe not. Maybe they’ve simply been terrorized the first time through and now live in the certainty that they will know that terror again.

It’s sad to think that patients must rise up in the defense of their own person and their own dignity, because there are those who are not capable of doing this. Even if they were not sickly and weakened by the ravages of disease, even if they were not vulnerable as defenseless children, there are those who could not rise up in their own defense. Caveat emptor is not an option for these peaceable souls. Why, I wonder, is it so hard for medical institutions to see and appreciate this?

Jill, you cite “the power dynamic” at work and I think you’ve characterized a privileged state of mind beautifully. As I discussed legal options with my lawyer after the fact, I found myself deeply frustrated that the hospital would choose to use a defenseless patient in making its pitch to a prospective employee. They could easily have had videos made, or they could have had their own staff stand in, disrobed or not, and demonstrate the various procedures used in radiation oncology. But they chose to use me instead. Why?

The answer is that in their corporate mindset I was available for them to use, and I was free of charge to boot. Better yet, my situation had the allure of observable tragedy, a real-life cancer drama that an outsider could experience vicariously, standing so near to watch and yet remaining distant and safely beyond its reach, untouchable. That’s “the power dynamic” in all its glory. My sense of the moment during that experience was that I was being used as a thrilling sideshow for that young girl, and I believe that was the truth of the matter.

And Joel, you remind us that an ugly episode is often a two-way street, that the patient is not the only victim of callous and insensitive institutional practices. The challenge for those who care, then, is how to encourage patients to “…be their own number one spokesperson, the first to challenge their care.”

Blog discussions like this one are truly an excellent beginning. Thank you for your hard work in energizing and maintaining this forum, and for your insightful contributions. They are much appreciated.

art stump

Anonymous said...

Art,

Going back to your encounter with the med student and the removal of your cyst --

I am presuming that the nurse was female? Did you "expect" that an assistant would be present and most probably a female? Were you then mentally prepared for that and either "prepared" and/or were neutral in your opinion as to her presence?

What could the med student have said or done differently (if anything) whereby you would have agreed to her presence?

If the med student had been male and acted exactly the same way the female med student behaved, would you still have absented "him" from observing?

I had a small procedure in an office about a year ago where the doctor had to remove basal cell carcinoma from of all places the base of my penis. The doctor (female) had her female nurse present to assist. My wife was present and I was more concerned about the pain of the procedure than exposure.

When I returned to have the stitches removed, the doc did so without an assistant. She apologized for the absence of her assistant because the process was going to take longer without help. This led me to realize that it is entirely possible in some or most office procedures, to have the doctor do it by themselves.


-amr

MER said...

amr: The key words in your recent post -- "because the process was going to take longer without help." Now -- I would like to believe that the concern here was for patient comfort, i.e. a longer procedure would be more uncomfortable for the patient. Unfortunately, I'm more inclined to believe that it was more a matter of time equals money.

Anonymous said...

There is a problem with interns walking into your room with a doctor. I recently spent 5 days at my local teaching hospital including an emergency room visit and several test, my insurance and I are being billed upwards of $35,000. That is allot of money for rude behavior from doctors conducting rounds. I was admitted for heart failure , when I met the doctor who was conducting rounds and the 7 interns they just filed in my room the doctor never explained who the interns where and just started hitting me with many questions and exams, it was beyond overwhelming and I got very nervous and never made eye contact with one intern. I am 42 yrs. of age and I am no stranger with teaching hospitals and different ones from moving around most of my life due to work. From age seventeen I was diagnosed with terminal non-hodgkin's cancer in a teaching hospital. I would have not thought I would have reacted the way I did on June 9Th of this year but I started shutting down. This same doctor in charge of the interns got worse with they way he spoke with me it was day four and he walked in my room and interns filed in and he immediate laid into me saying he could not refill my medicine once discharged and I better find a cardiologist (I never asked about refills) if I want to live and he said something that he was taking new patients. I just looked at him for a few seconds and and for the first time I actually looked up and at all the interns and looked each one in the eye and then I looked at the doctor and said "You may think you are god and you may be god but you are not the god of my choosing or understanding and I would never pick you as my doctor and told the him and the group to get the hell out of my room" Later that day I had people coming out of the woodwork after I told my nurse that the doctor is never to touch me or talk to me again. So people from patient services and the head nurse where trying to intercede but never agreed with me because they can never admit that the hospital could have maybe handle things in a different way. I was just about to check out which would have been against doctors orders and insurance would not pay for any of this, I was asked if it would be okay with a Nurse practitioner from the cardiac clinic could come see me and I said yes. The nurse came to visit me and within 40 minutes of her visit explained more to me about my heart problem then anyone and one month of my discharge I had seen her four times one being this past Thursday. I really like her and I was never going to deal with hospital again, she did say that no one could stand that doctor and he conducts his rounds horrible. The first person to admit there was a problem with this guy and it was not all me. Sorry for going on so long but just wanted to share about "rounds". Dr. Sherman and Mr. Stump and all the folks on this blog thank you for everything you do. I will share a few more stories that deal with modesty/privacy and my high school observers later.

Daniel

Anonymous said...

sorry me again, I left out some details with this "rounds" doctor because I did not want my previous post to get to long. I did not want readers to think I over reacted and it is hard to explain what I was feeling that week and it was not fear of being sick I have had huge health problems all of my life. Including this hospital visit many nurses say I am a great patient to have and enjoy my company. This doctor pushed a button that maybe comes from poor treatment from the past that I did not process so well when I was younger.

Daniel

Anonymous said...

Daniel, I hope you are doing ok now.
The teatment you received from the boorish doc is not a rare occurence and your response to him sounds like a good one.
amr
I get a bit lost on the posts here at times, but I think that one of the complaints by Mr Stump was the exposing him to a high school student just to show the student a eralistic view of medicine.. that was completely stupid on the providers part... and any med students Mr Stump chooses to exclude for what ever reason is his right. I am not sure how you would feel about a female high school student being allowed to view you nude.. but a lot of us do not want such an experience.
I realise your views on modesty are not quite teh same as many of the posters here as you have a female doc.. who probaly diagnsed your cancer and cut it out.. as well as took out the stitches.. so I do not think gender is any problem for you..(you may be one who is uncomfortable with a male doc or nurse).
As for myself.. I choose to have male docs..would prefer male nurses..for any intimate exam or procedure.. just am less embarrassed. as to student anything nurse, tech, cna, etc. the same thing applies..if it is below the belt and they are female.. they are gone...nothing for anyone to say ..period..
leemac

Anonymous said...

The comment from Art about a patient not knowing what all goes on pre-surgery through surgery is SO TRUE. The institutions and all involved do NOT want you to know. They will only address it IF and only IF a patient asks. How many patients that are not seasoned know to ask. It is a catch 22.

My comment to much of this discussion as to WHY this all goes on is this: I personally think hospitals and surgi-centers ASSUME that people are willing to BE A PIECE OF MEAT to have the blessings of being treated and having a surgical procedure. THEY think they are doing you such a great service that a patient is willing to do anything and put up with anything INCLUDING but not limited to VIOLATIONS of privacy, dignity and respect. They think people are not modest and they don't care about being displayed and handled by the opposite sex.

They act shocked when a man raises the issue !!!!

Anonymous said...

Lee, I was catching the last bit of the teaching hospital conversation here. I have a female nurse practitioner who specialises in cardiology and I have not chosen a cardiologist so far for permanent care. The rounds discussion was about visitors or interns or high school students present without the patients permission. After a lifetime of being in a hospital I have had countless violations where my privacy and modesty was taking for complete granted.

Here is my high school student story- When I was seventeen I had Non Hodgkin's Lymphoma very bad and I was a senior in high school. I was to receive the first lymphangiogram at this hospital I was told about the procedure briefly by the doctor the head of radiology about the test and I was alone at the time and did not know what question to ask and my parents sign off on it the day earlier. I actually got out of the hospital for a couple of days and the test was actually done outpatient. I was told it would be an eight hr. procedure and slightly dis comfortable at times. I was told that they would inject dye through needles in between my toes and cut across my toes and put tubes in the vein and I would have to lye still for pretty much the entire time. So the morning of the test my parents dropped me off at the hospital. The head of radiology (doctor) was an hr. late arriving for the test so that puts this at a nine hr. test. Three people in the room with me the doctor a male medical student and a female from radiology. It was explained that the female was to help in assisting me and make sure I was going to lye still. The male medical student was to assist the doctor. The test started very painful with the all the large needles going my toes and feet. I heard a timer going off about an hr. into the procedure and I was informed by the doctor, Donna had to do a full skin check and check how my lymph glands where doing and to make sure I was not having a reaction to the dye. It was the most embarrassing thing to find out an hr. into this test especially from being prepped for surgery two weeks before. I said you must be kidding and every hr. on the hr. I had a female tech check my entire body and exposed to all three people. At about two hrs. into the test my veins collapsed into my right foot and they had to start all over so this long eight hr. test was going to be around ten and a half hrs. long. I never urinated once due to the fact that Donna was going to have to hold my penis and a plastic urinal for me to go and that was not going to happen. The doctor was very excited about doing this test and kept inviting any and every doctor in my room for this test. About nine hrs. into this day the doctor gets a message by someone and leaves and comes back into the room with ten seniors from some school where there on career day. My privacy has been comprised all day and my modesty thrown out the window. The doctor was ready to close the incision with all ten high school students present he started with the left foot and the novocaine was pretty worn off on that foot because the test should have been over. I told the doctor I really could feel him putting in the stitches and he told me to buck up and he said it will scar more (who really cares if you have a scar on your foot) if he gives me anymore novocaine. What was I going to do with all these peers of mine watching this so I bucked up and acted the way I was told, I was getting really mad at this point but it was soon over. That was the longest most painful and embarrassing test of my life and told at the end to act like a man in front of everyone.

Lee I understood exactly what Art was saying and these rooms are not just for men hating females seeing them nude during a procedure or personal care, it is about respecting the patients privacy and seeing if that someone modesty is always addressed. I never stated if I prefer a female or a male tending to me. Violations of privacy and modesty come in all shape and sizes.

Daniel

Joel Sherman said...

Can you give some time and place details Daniel.
I must admit that I think it highly improbable that any hospital would bring in 10 students to watch a procedure like this.

Anonymous said...

I understand , Daniel. The various forms of modesty violations that happen... in your last post you listed at least two.. one was the female tech checking you for reactions and the other was having all those students around to watch you get sewn up... arm was the one who made commentary by asking art if it would make a difference if it were a male or a female med student... but as it seems art had bad experience with both a med student and a high school student on top of a gender difference.. and arm questioned if it were a gender issue.. I responded my feelings... I do not think that genderissue is the only modesty issue... as your post clearly shows, but with some of us it is a major issue...
arm clearly did not have a gender issue... it seemed to me it was the number of people present.. which is also a valid issue.
If I had a full body skin exam or intimate exam... I do not see why there would be a need for more than myself and the doctor to be present which is apoint arm showed by what a doctor needs assistance with.
leemac

Joel Sherman said...

Daniel has given me some more details which I won't repeat except to say mid 80's in Pennsylvania. But thanks.
Your story is maybe a little unclear. Were you covered for most of the procedure except when they checked your lymph nodes? If so it is more plausible. It would still be a major violation of privacy by today's standards and totally unacceptable. It certainly happens that a student follows in a provider's foot steps to 'shadow' and watch them. But 10 students is certainly even more outrageous. The other aspect of your experience is that lymphangiography is a minor surgical procedure under sterile technique and you wouldn't want ungloved and unmasked people anywhere near. If they stayed in an observation area it could be safe.
But if I had undergone such a violation, I'd like to think I would have protested. -Maybe not though given the time period and the severity of the condition being treated.
Daniel I think you misinterpreted what leemac said or meant and I won't publish the comment. Good luck.

artstump said...

To amr from July 9…

I accepted the doctor’s accompanying nurse as a member of my “treatment team” and as such had no objection to her presence. I, like others who have commented in other threads on this blog, have no aversion to female caregivers per se, a fact that I pointed out repeatedly in the book. I was prepared and fully expecting that the accompanying nurse would have complete access to my body as part of my healing team.

With respect to the med student, had she simply explained her presence and her interest and asked permission of me, I certainly would have given her request an honest hearing. But given the approach that she took, my reaction was quick and visceral. Her dismissive introduction set aside any possibility that I as a patient might have the right to control my own personal space. Had she first acknowledged my right to my own space, I would have at least had the opportunity to respond with a generosity of my own in possibly foregoing my right to privacy. That kind of reciprocity is what often leads to rapport, and rapport is what often leads to mutual cooperation – but she would have none of that. There was no rapport happening in our conversation, only expectation. And that’s what set me at odds with her. That lack of rapport, trust, respect, or whatever you might call it, trumped any question of gender.

To Daniel from July 11…

From your account I applaud your reaction and your courage. Bottom line, you took charge of your own life and your own person.

Your reaction to your rounds doctor was appropriate, it seems to me, given your history with him. But beyond that, Daniel, consider the impact that you had on the accompanying interns. Possibly for the first time some of them were shown a powerful life lesson: that the patient in the bed is above all else a person. You will almost certainly never know how many other patients in the future practices of those interns will receive a more caring and respectful doctoring because of the public stand you took against a doctor who publicly humiliated you. Again, I applaud you and wish you well.

art stump

Anonymous said...

Lymphangiogram studies are very
rare and as such I could envision
perhaps a number of radiology
personel watching the procedure
simply for the experience.
Once the dye is injected and
viewed under fluoroscopy then
regular overhead plain films of
the lower extremities and the pelvis are performed.
The only area that needs to be
exposed are the feet. The contrast
dye used in the 80's was hypaque,
which if you are going to have a reaction would occur in the first 30 seconds post injection.
No SKIN CHECKS are needed as the
first signs of reaction are vomiting,nausea,swelling of the throat,difficulty breathing and
maybe a skin rash on the forehead.
If a reaction gets that far then
a code cart needs to be near as well as benedryl.
You can't evaluate lymph nodes
for a reaction,it dosen't work that way!


PT

Anonymous said...

"as to student anything nurse, tech, cna, etc. the same thing applies..if it is below the belt and they are female.. they are gone...nothing for anyone to say ..period.."


I'm with you leemac, you stated it perfectly.

LG

MER said...

Anonymous writes: "They think people are not modest and they don't care about being displayed and handled by the opposite sex."

Why do they think this? There may be many reasons, some of which we've discussed on previous volumes of this thread.

But I think the main reason they believe this is because we, as patients (the vast majority of patients), give them no feedback to make them think differently. We state to them implicitly that everything's okay.

That's the key. I don't know what Danial did after his encounter with the doctor -- but that encounter wasn't enough. We need to write an account of the incident in a letter, describing it in detail and including how we felt about it and reacted. We need to send that letter to the doctor, to the hospital administrator, to the local ethics board and to the licensing board. Only when we send a letter like that to several sources will we get some response and get their attention. I've been shocked over the years with friends who have had experiences like this and who never let their doctors and caregivers know how they felt about their privacy invasion.

We are doing no service to each other and to the medical system by remaining silent. We are making it more difficult for the next patient who encounters such an experience. Daniel was probably considered a "bad patient," an exception to the rule, someone who is just a crank. Unless his complaint follows a series of complaints and the event can be seen in the context of regulary privacy/modesty violations, Danial is just another difficult patient.
We owe it to each other and to the system. Even if only 15 or 20 percent of those violated wrote letters, the system would begin to wake up.

Anonymous said...

You are correct MER in that people do not provide feedback with a bad and unacceptable experince. I did, and got little in return and no satisfaction. It is brushed off as a crank patient or upset spouse. No credence is given for the i
rate patient. They blow it off like you are 1 in a million .....a nut.
People in general do not take the time to expound on their feelings. I think they are intimidated and just write if off as something that happened and what can I do about it now syndrome. Too bad because as you say it damaging to all of us and things will never change.

Anonymous said...

At one point or another there will
be an attempt to ambush you, therefore,its imperative to ask questions.Make it a point to ask
who will be performing the exam
and who will be in the room.
By simply asking these questions
will send alerts that you expect
privacy. You have the right to stop
the exam at any point. I know we all have experienced this but
prevention is the best tool.


PT

Anonymous said...

MER-
You are correct in what you said about follow up letters to all parties that could be involved. I still have allot further to go but here is what I am working on-

I received a survey of my hospital stay by random the letter accompany it said 1 in 10 receive the survey. I filled it out with the comment sections loaded and wrote a letter in more detail and photocopied the survey and the letter and sent the survey to the address it said (not even in this state) and a copy of the survey and the letter to the hospital.

I am currently working on two different letters, one for the hospital and other agencies for my complaint. I am also working on a letter to the hospital about the great experience I had with my nurse practitioner overseeing my current heart problems and when I was a patient how she made calm out of chaos. By doing the second letter I feel I can reiterate the problem and compliment my nurse and let the hospital know her actions and personality saved a soon not to be customer all in the same letter. Ironically the cardiac clinic that I go to the rude rounds doctor it is his home base has treated me with the best care out of the entire hospital. I have been there four times and everyone involved from the receptionist, nurse asst., and my nurse get five out of five gold stars for all four visits. My last apt. my nurse had I guess was an emergency over at the hospital, before she left she stopped in and said she was going to be late and how sorry she was (I was already in my room). Five minutes later the nurse asst. brought me in a five dollar gift certificate and told me I could use it anywhere in the hospital as cash. She told me to go take a walk and get a drink and snack on them. I did not get a gift cert. because they thought I would overreact because I noticed there was two gift cert. in her hand and she knocked on the door across the hall when she was done with me. I am sure they use them in many dept. for many reasons but this cardiac clinic always makes me feel like I am the most important person in the world when I am with my nurse or receptionist or an nurse asst. This dept raises the bar in health care. So as easy as I can complain about poor customer service I am the first to compliment great customer service which is a rare thing these days.

Daniel

artstump said...

To PT from July 13…

You offer a wonderful suggestion. Those two questions alone establish ground rules for your treatment and do so without becoming adversarial. You’ve given the caregiver an opportunity to become aware of and to respond to your concerns without having to mount a defense in a face-to-face. That is, you’ve given the caregiver an opportunity to be a sensitive and respectful caregiver.

I can imagine further give-and-take, of course, should the answers to the first two questions not be to your liking, but it is certainly a nice way to put concerns on the table for all to see without going to war.

art stump

swf said...

Recently I was referred to an Ortho Surg. from my Ortho Phys. as he felt I needed a proceedure that I have been on the fence about. Not a big proceedure....just don't really want it.
During the consult I brought up concerns about who would be in the room, degrees of undress, some of the standard concerns here.
He left the room and returned with a perscrp. for anti-depression meds and a suggestion for counceling due to my "mistrust of the medical profession".
Modesty issues are a struggle, but this is the first time I was ever treated as if I were crazy because of them.

MER said...

Daniel:

You bring up an essential point. When we run into privacy or modesty violations, or any customer service problems -- we need to focus our complaint. We should not condemn the entire hospital or clinic. Hospitals and clinics are filled with many very good, caring nurses and doctors and techs. As you're doing, in any complaint letter we should praise those who are doing a good job, not only to give them the credit they deserve, but to show those reading the letter that we are not merely focusing on the negative. Often the positive gets neglected. Reporting the good with the bad gives the letter more credibility.

That's one major value of Art Stump's book. He is able to focus on the whole system, praise it, condemn it, describe it, chastise it. He takes a hollistic view.

But, the bottom line is that we need to make sure the unacceptable behavior gets described in detail and reported. Patients need to make it clear what is unacceptable and will not be tolerated.

MER said...

I've been slowly rereading Art's book. It's a classic in the sociology of hospitals -- an inner journey into the hidden details of a very private treatment. It's a wonderful participant-observer text. A few observations:
-- Art focuses on what he calls the protocals, the little rituals and dramas patient and caregiver go through. The best example, I think, is the case of how far down to pull his shorts. He pulls them down once he lays on the table. The tech pulls them down a bit further. This happens several times, and Art things this is the tech signalling her control of the situation. So art experiments. Next time pulls his shorts down further than necessary. The tech pulls them up. This confirms to art that this little "game" is to show who is in control of the situation. This doesn't bother
Art, he says, because he has trust in his techs and has turned over control to them. But here we get an insight into the little games being played and how patients have to figure out what the rules are.
-- The conversations during his treatment. Art is often leading the dialogue, trying to make personal connections with the caregivers who are focused on his body. The small talk he initiates seems an attempt by the patient to maintain his human status in the context of an impersonal procedure. Note that he enjoys one particular tech especially. He says that when she runs the machine it feels like an extention of her hand and not an impersonal action, unlike the other techs.
-- With this same tech, Art describes the sensual nature of her touch. There's no suggestion of anything sexual or erotic, but there is sometimes a fine line between the sensual and the erotic. This sensuality seems to be a comforting factor, a symbol of caring. It connects with Arts outright statement that he prefers a woman's touch. This aspect of medicine is not often discussed -- the sensuality of the caregivers touch. It's often ignored or assumed that the whole idea of sensuality is equal to eroticism or sexuality. It isn't. It's part of one human being connecting emotionally with another in a comforting way.
Art also talks about how, when he first enters the treatment center, each caregiver greets him once, the first time with all her attention. After that, the assumption is that you've been greeted with no real need to say hi or hello. This is another of those rules or games that patients need to learn.

These are just a few of my observations about this book which an excellent sociological study of what goes on under the surface within hospitals. This book needs to part of the curriculum for doctors, nurses, cnas, tech, med. assts. -- anyone dealing with patients. Medical professionals often think they know much more about what patients are thinking than what they actually know. As we've often said here, they assume too much.

I'd appreciate if Art would comment and knock me off my platform if I'm assuming too much.

Joel Sherman said...

I'd like to update my thoughts on Daniel's initial therapy for lymphoma as I have had some private correspondence with him. When they were performing the lymphangiogram he was not uncovered and he was not uncovered when the students were observing. So his treatment was not unheard of for that era and somewhat different from Art's and Jill's sister. Still bringing in lay people and kids to observe a cancer patient is a gross violation of privacy. Daniel's problems were as much due to the fact that he was left completely in the dark as to what would happen including unexpected exposure from gland checks and the fact that the nurse wanted to hold a urinal for him. He was a kid who was told to cooperate with his providers fully and not cause any trouble. He badly needed more support from both family and providers.
Possibly Pennsylvania is behind on privacy concerns. I was once traveling on Interstate 80 in northern PA listening to local radio when I was astounded to hear the station announce that day’s hospital admissions and discharges! This occurred approximately in the late 70's.

Joel Sherman said...

swf, I'm confused by your post. Are you in the USA? In this country all orthopedic physicians are surgeons, and I can't imagine one prescribing an antidepressant which would be way out of their area of competence. Be like a psychiatrist prescribing a heart medicine.
But we all agree here that you need not be crazy to mistrust the medical profession (or nearly any other profession as well).

Anonymous said...

Dr Sherman, the small town I was raised in used to put the hospital admissions/discharges in the newspaper.. If you went to the hospital, if you got a ticket.. all went into the newspaper.. they only stopped doing it in the mid 80's.
leemac

Anonymous said...

Regarding the orthpaedist prescribing anti-depressents. I
believe it and I've seen worse and
one of the most egregious was a podiatrist prescribing methamphetamines to one who was not his patient.
Fact of the matter is most states
had no real oversight on physicians. Only within the last few years that you can find every
medical board on-line which lists
al physicians and allows one to file a complaint on-line.


PT

artstump said...

To MER from July 13…

MER, thank you so much for your kind words about My Angels Are Come – and for your thoughtful analysis. I’d like to comment on some of your observations.

As far as the book being part of a curriculum for people dealing with patients, one of my hopes for the book from the outset was that people working as caregivers in virtually any capacity would benefit from an account of life on the other side. It’s much too easy for caregiving professionals to be consumed by the overwhelming demands of their responsibilities and duties and maybe lose sight of the humanity under those sheets. I question whether I could do their job day after day and not settle into a kind of benign detachment. It takes a special kind of person to do what they do.

With respect to the “Interaction Protocol” at the center, I suppose that it was much like that of any sizeable office. I explore it in the book because, although it was functionally efficient, it required an ongoing adjustment on my part – because of the extraordinary warmth of the staff generally. They were all skilled professionals with an empathy that was apparent and available, and that was an important part of what they brought to patient care. I found it interesting how they were able to balance that openness with the need for functional efficiency, and I eventually came to see an Interaction Protocol at work.

Incidentally, I don’t know how a team like that ever gets recruited and managed, but my hunch is that it was 99.9% the result of the medical director’s (Dr. Somers’) personal vision. As a group, his staff were competent professionals, all working together on the same page, and all focused firmly on the patient’s well-being. That kind of thing doesn’t just happen on its own.

With respect to Hana’s remarkable touch, it was one of the great and enduring mysteries for me in the course of my radiation therapy. As I explain at length in the book, I’d never encountered anything like it before, and to this day I am at a loss to explain it – although it made the selection of a title for the book all that easier.

By way of background, please understand that the hormone therapy that I was receiving in conjunction with my radiation treatments left me with zero libido. So eroticism was never a factor in any of my subjective impressions.

As I was writing the book I struggled to find the right word to convey to the reader my sense of Hana’s touch, and I eventually settled on the word “sensual.” Sensual works well enough, but it’s such a loaded word. Perhaps a better description would be that from the book: “…pure communication one body to another, a moment of communion with the peaceable soul that is Hana.”

On my final day of radiation therapy I met with Hana, and in our discussion I plainly characterized her touch as a “healing touch.” I think that says it best. Her touch was powerfully gentle and unquestionably feminine, and it always left me with a deep sense of comfort and peace. What a wonderful gift for a caregiver to have.

art stump

swf said...

Dr. Sherman
"I'm confused by your post. Are you in the USA? In this country all orthopedic physicians are surgeons, and I can't imagine one prescribing an antidepressant which would be way out of their area of competence"
My first Ortho Phys. likes to deal with pain managment therefore I have tried a lot of injections and such. He rarely does surgery and I can not speak to why.
The other prefers surgeries and does very little in the area of pain managment. They share an office and trade patients often I am told.
He also stated he prescribed antidepressants quite often, as he says "pain is depressing". In my case he felt it would relax me for therapy.
Needless to say I am not taking them. Nor have I gone back.
Also:
"But we all agree here that you need not be crazy to mistrust the medical profession (or nearly any other profession as well)."
I tried to point out to him that modesty issues are not always the same as not trusting the medical profession but (again as I'm told ) to date he is still offended by my questions.
oh...yes I live in the US. Sorry for the confusing post.

Jill said...

I didn't mean any personal criticism, Dr Sherman. I appreciate as a junior person and at that time, you couldn't change the world. Thank you for this forum.
I suppose that I wanted people to understand that these violations are deeply damaging and could result in suicide.
My SIL would have been embarrassed anyway, but having multiple unknown young men and an older man surrounding and observing her was her worst nightmare 1000 times over.
Even to this day, she gets upset talking about it.
She said she felt defeated, worthless like a lump of meat served up for the gratification of any man who cared to stroll in for a look.
It reduced her to total insignificance.
I understand staffing shortages and an unbalanced gender mix means some patients still put up with opposite sex care although apparently, a woman would never have all male care, the worst would be one man and one woman.
Men would be in the same position.
I don't think that's good enough...to be totally naked is VERY difficult for most people and when this IS necessary, same sex staff MUST be available.
BreastScreen in staffed entirely by women so why can't the cancer treatment dpt provide the same consideration - even more important when complete nudity is required.
To treat cancer patients in a manner that causes enormous distress moves their focus from getting well to feelings of a negative and distressing nature.
I really believe these feelings could tip the balance between recovery and death.
I plan to read Mr Stump's book on my forthcoming holiday.
So sorry you were treated with such disrespect. Your experience was brutal in it's lack of consideration for another human being.
So often these violations are dismissed because they occur in a medical setting.
That is unacceptable...a violation is just that and unacceptable in any setting.

Joel Sherman said...

Thanks for the clarification swf. Yes there are orthopods who choose not to operate. Many are in sports medicine or rehab.
But I agree. I would flee from an orthopod who felt free to prescribe antidepressants. Any patient who really needs an antidepressant should be followed by more appropriate physicians

Jill said...

Jill again...
I was just going to add that I doubt patients today would have medical students wandering in unannounced when they're fully exposed without their consent, but I see that Mr Stump's disgraceful treatment occurred in 2004.
I suppose we can never just "assume" the right thing will be done by us.
That means the onus is probably on every patient to INSIST on same sex personnel and to make clear that NO ONE is to enter the room or observe you during treatment without your express permission.
I wonder whether people just get lazy or become blaze when dealing with the human body all day and need constant reminding that we're actually human beings.
It shouldn't be necessary, but sadly, it appears that it is...

Joel Sherman said...

A few further comments Jill.
Art Stump's privacy was invaded without his consent not by medical students which is bad enough, but by a female high school student.
But beyond that, not everyone insists on same gender care. Art Stump accepted the women techs without problems. But everyone cares about being treated with respect and having their privacy honored. Letting all sorts of personnel wonder by and observe would bother most people no matter what the genders involved were.

MER said...

Thanks for your response to my comments, Art. Your perspective should give thought to those men who are absolutely against any female intimate care under any circumstances. I've heard other men tell me about the tenderness and sensual and communicating aspects of a woman's touch in these circumstances. As in Art's case, the best person for a particular job on a particular staff may be a women.

Now, don't misunderstand my position. I'm all for choice. I think that's essential. But, as Dr. Sherman wrote, I'm personally of the position that I must be afforded respect and dignity. Beyond that, I'm open to either gender care under most circumstances. I think it's important that we as patients be open to caregivers who are really compassionate and empathetic, regardless of their gender. They may be genuinely trying to communicate, make contact with us, and some men may be just rejecting them out of hand because of their gender. That may be just fine in the long run. On the other hand, it may not be in the best interest of the patient in the long run.

swf said...

MER
Now I can't speak from the book's point of view as I have been anxiously awaiting it for 2 weeks, but I am wondering if you are upholding Mr. Stumps right to choice, or saying in this intimate care situation you wouldn't mind a female "caregiver", or both.
If the second is true, I would wonder also (besides permission and approach) what would set one intimate situation apart from another?
In the sense that it applies to same gender intimate care beliefs, I would ask the difference between it being alright with one woman and not another.

Anonymous said...

MER
I will agree there are times and places where gender is not very important in a provider... But there are times gender..is very important..
The only way you are going to know the character of a care giver is to have experience in their care.
That said it is also true that you aren't going to appreciate any good qualities they may have if you are embarrassed.. and hving to "go elsewhere" in your mind.. Within my ability to do so, I will refuse female care invoving intimate areas... the exception is if I an unconcious and can not object.... although it would be best for all if I did not come to right then either..and there is the possible occurence that a doctor said I did not have presence of mind sufficient to make my own medical decisions.
I do want the best care...but I will settle for even inferior..if I am not subjected to such embarrassment.
leemac

Anonymous said...

MER, it wouldn't matter if I were referred to the top gynaecologist in the country...if it was a HE rather than a SHE, I'd take No 2 or 3...
I simply would not put myself through the extreme discomfort of an intimate exam by a male doctor.
It would be detrimental to my health.
For me, the extra expertise or experience would mean nothing when compared to the extra discomfort it would cause me.
I have seen male doctors for general things, but have a blanket rule if anything invasive were required.
It's not fear of attack, just extreme discomfort/emotional stress.
Leah

Anonymous said...

Dr Sherman said" Art Stump accepted
the women techs without problems.But everyone cares about being treated with respect and having their privacy honored."
Herein lies the problem in that
female providers won't respect your
privacy as a male patient. I've seen it played over countless times
and have experienced it as well.
Why should you have to make it a point to ask for respect for your
privacy. Why? They are ethically
bound to do so! Actually, now that I've written this I suppose that
would even make a stronger statement if you have to make a formal complaint. " I warned them
and they still disrespected my
privacy". Better yet I'm just
proactive and absolutely refuse
and all types of intimate care from
female providers.

PT

Joel Sherman said...

I posted your comment PT, but just barely.
You have your own experiences and you're entitled to your opinions, but it is not helpful in my opinion to brand all women providers (or men) as being disrespectful to your privacy. I know many nurses and women doctors and I would trust the vast majority of them fully.
There’s plenty of privacy violations to go around for everyone and we don’t need gender wars.
Please feel free to post your actual experiences on the appropriate threads.

MER said...

Part 1

I see I touched a few nerves. Let me explain.
1. I don't question any of your values or choices. Do what makes you feel most comfortable. That may or may not be in your best interest, from a physical point of view. It may be better psychologically and that may be best for you. That's your choice.
2. What bothers me is not so much opposite gender care but the gender neutral attitude and the double standard -- and the rights of patients to choose what makes them feel most comfortable.
3. What also concerns me is patient respect and dignity. A medical facility that doesn't attempt to hire and staff to accommodate both genders, in my opinion, consciously, subconsciously or unconsciously is demonstrating disrespect for their patients, esp. the gender not accommodated. If I felt that there was no choice available to me, that the attitude was it shouldn't matter, that the nurse of either gender had poor communication skills or lack of empathy, I would feel disrespected. In such cases I might push for same gender care to make a point. If I couldn't get it, and needed the procedure, I would probably accept opposite gender care but I would make it clear in writing that I felt disrespected because I had no choice in the matter -- that I was agreeing under protest because it was necessary medically.
4. There are some on this blog of have had many experiences and based on those experiences have come to a firm decision on this matter. That's fine. There are others who have had a few experiences, and those who have had little experience. In my mind, this issue is extremely contextual for most people. Yes, it may depend upon the approach, the offer of choice, empathy, communication, fear of death, vulnerability, stress, etc. We can talk about this until the cows come home, but it's all theoretical. You've got to be in the situation, observe it, assess it, and make a decision.

MER said...

Part 2

5. I think it's dangerous, and could even be counterproductive in a medical situation, to stereotype anyone. It may be wiser to express one's preferences and concerns and then see how the caregiver responds. If she responds with a "We're all professionals here," of "I've see a million of these; what's makes yours different," then you know where you stand. Those are neither respectful answers nor responses that show any empathy. Then you can request another nurse, and perhaps a male nurse.
6. Frankly, I think patients should see themselves as standardized patients. They should educate medical professionals when necessary, e.g. "Do realize what you've just said and how that sounds to a patient?" "I'll just assume you're having a bad day. Let's start this conversation over, shall we?" "Before we begin, I want everyone in the room to introduce him/herself and tell me their position and the role they will be playing in this procedure. Then we can discuss who will stay and who will leave." "Let's discuss why no male nurse is available, and how that fits into the core values of this institution. If you don't feel comfortable discussing this with me, send in your supervisor." "These are my feelings, my values. They are valid. My expectation is that you will honor them and treat me with dignity and respect."
7. Having said all that, I do believe that a significant number of female caregivers need more training in male psychology. but even that will not do any good if there are not enough to accommodate men.
8. I think men are accommodated in these situations more often than we think. Maybe not completely (such as all male surgery teams -- but then neither are women all the time, eitehr) -- but in ordinary situations. A major problem is that hospitals and clinics don't want to talk about this, even to assure patients that they will be accommodated if at all possible. This is pretty much a taboo subject in the medical culture. They don't want to face it. This causes some patient stress, fear and suspicion. It's a tragedy that the medical culture just doesn't get it.

artstump said...

For the sake of focus I’d like to redraw a distinction here between the behavior of individual care providers and that of the institutions that employ them.

The incident described in My Angels Are Come was an event orchestrated by a healthcare institution for its own gain. During the event’s execution the institution chose to deliberately disregard its patient’s right to privacy, apparently doing so for the sake of convenience and economics.

This is quite different from questions of patient preferences with respect to the gender of caregivers present during various intimate healthcare procedures. Unquestionably, preference mismatches can and do result in traumatic experiences for the patient.

But while this scenario is disrespectful and even contemptuous of what the patient might want, the earlier scenario rises to the level of predatory, purposefully misusing a patient in that patient’s most vulnerable hour. That is little more than a calculated exploitation, and it is in every sense a betrayal of sacred trust.

art stump

Jill said...

Shocking...
I'll definitely be reading the book.
I understand there are people who don't mind opposite gender care.
I do feel concerned though about the young, very shy and uneducated.
Not everyone feels able to speak up in a medical setting.
I saw an interesting article in the newspaper a few months ago.
A high % of women requested female doctors at a sexual health clinic...a smaller % of men asked for male doctors.
When patients could simply tick a box nominating choice of Dr...the overwhelming majority of women ticked a preference for a female Dr and a slightly higher % of men asked for a male doctor.
When the patients were interviewed, some admitted feeling stressed and reluctant to see opposite gender doctors, but felt uncomfortable making that request or had been fobbed off previously or made to feel immature or silly.
Some just felt intimidated by the medical/Clinic environment and didn't want to make waves or lacked the confidence to make the request.
Many said they'd see a Dr more often or more promptly, if they were guaranteed the doctor of their choice.
Some patients said the exam became a negative experience when they didn't have a Dr of their choice.
I suppose that's why with very intimate procedures and maximum exposure, I think the option of same sex should be offered.
I understand that was the reasoning behind BreastScreen...make it as user friendly as possible and women are more likely to have their screening.
Of course, we're all free to consult the Dr of our choosing, this applies more to settings where we have less control...free clinics, hospitals and medical diagnostic centres.
Just my thoughts...

Anonymous said...

No one said anything about gender
wars. These are my observations
as well as experiences,however,
my point suggests that if you allow
yourself to be too trusting in these scenarios then expect to
have that trust violated.

PT

MER said...

I must say, though, in your case Art, there were two other things going on. We can talk about faceless "institutions" doing things for their own gain, but actual people have to carry out those orders. In your case, "Denise" carried out the act. Secondly, there must have been others in the room who knew what was happening was wrong, yet no one stood up and stopped it. We can't simply blame faceless institutions. People run institutions, and other people have to implement the policies that those people create.
We see this human behavior throughout history -- "I was just following orders." Ethically, that doesn't work. That's been determined in the international courts.
Institutions can make bad decisions, but individual human beings are the ones who consciously decide whether to follow those bad decisions or not.

Anonymous said...

I think you are good at expressing concerns , art. MER and others are too..along with DR Sherman.
The thing is.. I think that for the most part far too many providers only attribute traumatic events to war when it comes to a male patient..
leemac

Mike said...

"there must have been others in the room who knew what was happening was wrong, yet no one stood up and stopped it" Quote:MER

MER,
I couldn't agree more....we need to hold others accountable for their omissions.
Australia has taken steps to hold other doctors responsible if they see improper conduct and don't report it.
It should equally apply in a setting where a patient is treated unethically.

We had a very bad case fairly recently involving a male gynaecologist mutilating women in theatre and blatantly assaulting them in his rooms and in hospital. His conduct toward women was criminal for many years and the system allowed it to go on and on...
More and more the Medical Board is being shoved aside in favour of the Police. It's a shame that didn't happen sooner in this case.

The "doctor" was Graeme Reeves....also called the Butcher of Bega (where he "practised")
He's now imprisoned and struck off, but it took a LONG time for authorities to stop him.
Now they're after the doctors that saw what was going on over many years and did nothing....they didn't intervene or report him.
It seems some doctors even covered up his offences.
Choosing to look the other way and not get involved will be a dangerous attitude to adopt in this country from now on...
If you're interested, you'll find an article at www.news.com.au/story/0,2359923295138-421,00.html

Bill said...

The authorities don't do much to protect patients, so the rounding up of doctors who didn't report Greeves is hypocritical.
We have a convicted rapist still practising in this country.
They've told us he won't be able to see women.
Oh, great...that makes it alright then!!!!
Surely this person has shown us all that he is not a person to be trusted and working as a doctor places him in a position of trust.
How can they effectively monitor his activities day to day when he's still allowed to work as a Dr?
If he offends again, it's too late for his latest victims. They'll live with the pain of the assaults.
Why is it the patients always seem to come last in these matters?

http://www.news.com.au/heraldsun/
story/0,21985,24552266-2862,00.html

Joel Sherman said...

The above post is off topic here. I will copy it to the personal privacy violation thread and delete it from here in a couple days.
But beyond that this blog deals with medical privacy violations, not criminal offenses which are a totally different matter.

Anonymous said...

Arnold Schwarzenneger,govenor of
california has fired 6 of the 7
appointed state board nurses. The
full article can be found on
allnurses.


PT

Joel Sherman said...

Jill,
I'm going to copy your comment of July 15th over to the gender preferences in healthcare thread.
I have tried to put together as much information there as I could find about what patients real gender preferences are. You might take a look at it.
If you can come up with the article you referenced, please post it.
There is no doubt that most people, men and women, prefer same gender care for intimate issues though there are other variables in play, especially age.

artstump said...

Privacy Violations…1

I wouldn’t disagree with those who feel that egregious situations call for some member of the medical staff to take the initiative and raise objections. And I also understand the inadequacy of the “just following orders” defense. At the same time, many situations in the real world are not sharply defined in blacks and whites, and most are not nearly so clear in the moment as they are in hindsight.

If I were working as a radiation tech in a treatment room, I doubt that I would feel free to interrogate patients as they enter the room, questioning them about how they’d feel about having outsiders in the room. That would not be part of my job, any more than it would be my place to ask patients how they plan to pay for the medical care that they are about to receive.

As a radiation therapist I would know that patients who come in for treatment are seriously ill people, and for that reason alone I might expect them to appear worried, anxious, scared, or be otherwise preoccupied. My job would be to put them at ease and carry out their assigned treatment program as best I could. That’s what I was trained to do.

The role of the institution in patient therapy, on the other hand, is a step removed and very much broader. The role of the institution is to provide a standardized environment with standardized procedures so that effective treatment can be delivered to the patient.

The institution must see to it that all preparatory arrangements have been taken care of before the patient comes through the treatment room door. Such arrangements would include scheduling, insurance and financial matters, and the securing of authorizations and permissions of every sort – not the least of which might be the patient’s permission to have persons not on the patient’s caregiving team in attendance.

Unless there are onsite questions or objections from the patient, the therapist’s responsibility is then to administer treatment as quickly and smoothly as possible.

Obviously I simplify the real world in order to make a point. In the real world a layer of supervisory personnel would serve an intermediary role between the institution and its hands-on therapy staff. And in the real world lines of responsibility would never be so sharply drawn.

But in any case the therapy staff working at the level of treatment delivery must be fully confident that all outstanding doctor and patient concerns have been dealt with beforehand. They must have faith that their institution, be it hospital or dedicated treatment facility, has done a thorough job in preparing the patient to receive treatment that day. If the staff’s faith is somehow betrayed in that respect, I believe that they suffer the consequences of that betrayal right along with the patient.

art stump

artstump said...

Privacy Violations…2

In chapter 14 of My Angels Are Come I describe an exemplary response by treatment staff to a perceived patient distress – my distress. My smoldering reaction to the privacy invasion that I had experienced several days earlier was confused and conflicted at best. By the time I arrived at the treatment room that day (in chapter 14) my intention was to simply get my dose of radiation and then exit the building as soon as possible.

I believe that it was one of my radiation technicians, Megyn, who picked up on my level of stress that day and set in motion a well-practiced rescue drill that I’m guessing the staff had at the ready, should a patient show signs that something was not right. She took the action on her own initiative and not because of anything that I requested. I don’t believe that I would have been capable of asking for help that day, because I didn’t really know that I needed help. I only knew that inside I was falling apart.

I also explain in chapter 14 how the agony of my anger was eventually brought to light by the determined grit of a remarkable radiation nurse named Rachael. Her dogged efforts to help me brought about some immediate corrective measures that were within the purview of the center’s medical director to implement. I have no way of knowing whether those measures were later formalized into hospital policy or left to the discretion of the rotating staff employee.

All of that to once again make the case that it’s the healthcare institution that makes it possible or impossible for conscientious caregivers to properly do their work. Of course, there are disrespectful and mean-spirited people who work in every profession, including that of the caregiver. But it’s also true that well-meaning people in the employ of healthcare institutions can sometimes be caught up in hurtful situations not of their doing. I think as patients we must always be mindful of that and be understanding.

Bottom line, I strongly believe that healthcare institutions must be made to shoulder the bulk of the responsibility for upholding patient privacy rights. However, I think that for the most part healthcare institutions believe that things are going along nicely just as they are; patient privacy remains an attractive talking point for their marketing departments but is not a medical care issue that needs to be prioritized, at least not until they are forced to do so.

I’m hopeful that readers and posters on blogs like this can make a difference one post at a time and eventually call these institutions to account.

art stump

MER said...

Art: A few comments and questions.

1. Part 1 of your recent post -- what you describe simply does not exist in medicine today. You describe the ideal. Some institutions may be better than others in terms of patient privacy. But there's really no way for patients to know except for word of mouth. The institutions will not advertise or communicate this issue up front.

2. My sense is that if your ideal is to work, it must work on the ground level, that is, right in the radiation room. If those techs don't feel comfortable asking the patient about privacy issues, that's the problem. They need to feel comfortable asking. They must be told that they should feel comfortable asking. Because that's where the rubber meets the road -- right in the room at the time of the procedure. All the people in between the top brass and those doing the procedure make no difference at all if those doing the specific work don't feel comfortable protecting patient dignity and privacy. They must accept that as their duty. Otherwise they're just robots working on objects.

3. Your last comment in Part 1 about the staff having faith in the institution. I would suggest that a significant number of staff have even less faith in the institution seeing that these kinds of decisions are made than many patients do. Staff knows what's going on in the hospitals. They know the problems better than we do. The kind of faith you're suggesting perhaps only belongs in churches, certainly not in medical institutions today.

4. You do mention that there is layer of supervisory staff needed, but we're still really talking about "institutions" doing this and doing that, and then going right down to the floor level and talking about the techs. If these layers of supervision are to work they depend upon communication. That's the problem. Good communication simply doesn't exist in most large medical institutions. If it's not happening in serious medical situations, what's not happening in terms of patient privacy? Sorry, I just can't have faith. Every serious medical advisor I know of cautions patients to have an advocate when they go into the hospital for surgery or treatment. Why? Because of this communication problem.

5. I admire your sense of fairness and objectivity. I'm not sure I could so kind and forgiving if such a violation happened to me.

6. At one point in your story, you mention running into "Denise," the one who took the high school girl into your treatment room. You say she called you "Mr. Stump," with an extra accent on the "Mr." As a reader, the suggestion was she was making some kind of point with that flourish. I don't know if I could accept the fact that she was still walking around the institution after what she did. The fact that she was still walking around suggests that the institution either agreed with what she did or didn't think it was such a big offense. At any rate, if that had happened to me, I would not want to see that woman again in any circumstances at all. What are your thoughts on that "Mr. Stump" incident? Was she being disrespectful? Was she flaunting the fact that she was still around even after your complaint? What was behind the way she addressed you?

Finally, if I had gone through that incident, I don't think I could have continued any trust at all in the institution. Having said that, there's no way I can really understand your psychological state based upon your serious illness and your feelings. I'm not criticizing you. You did what you needed to do to stay alive, and I admire that you are as forgiving as you are. I'm not sure I could have been that forgiving.

Joel Sherman said...

Excellent posts, Art. I agree with your emphasis that all institutions should have privacy issues worked out before hand. Obviously some hospitals do give patients forms for this. It can be done.
In an ideal world, anyone should be able ask you in the midst of procedures if you are comfortable with observers presence. In practice it's not so easy. The nurse or tech could stir up a hornet's nest and wind up being fired, even if their intentions were exemplary. No institution will thank an employee for precipitating a lawsuit.
So as I've said before, the major blame lies with the institution unless 'Denise' didn't follow protocol and brought the girl in against the hospitals own procedures.

Hexanchus said...

I agree with MER's latest post.

As Art has pointed out from his experience, patients in these types of situations are typically not able to advocate in their own behalf. I believe it should be an absolute priority for any provider engaged in the treatment process to act as an advocate for the patient when they are not able to do so on their own.

That's not just a piece of meat laying there, or a lab rat or teaching tool or promotional opportunity - it's a person, a fellow human being with the same hopes and fears we all have.

The respect of the patient as a person must come ahead of any other concern or interest. If an institution's policies don't reflect the inherent respect for the patient as a person first and foremost, then they need to change.

No unnecessary personnel of any kind should ever be allowed to be present for any treatment or procedure without the explicit prior consent of the patient.

MER said...

Joel wrote: "unless 'Denise' didn't follow protocol and brought the girl in against the hospitals own procedures."

Problem is, we'll probably never know what the procedures were. Do you think we'd ever be able to get a copy of those documents if they ever did exist? I will assume (could be wrong) that there was nothing specific against what Denise did in any written procedures.

If there were rules agains what she did and she went against them, was she repremanded or punished in anyway? We'll never know. If there were written rules against this, you'd think the technicians would know the rules and that someone would speak up and stand up for the patient. We'll never know. Seems to be a serious communication problem, doesn't there?

Denise shows up later in Art's book and addresses him as Mr. Stump with some kind of emphasis on the "Mr." I've asked to comment on that. How did you interpret that address, Art?

Art has told us that this may end up in court. He's dealing with a lawyer. When communication breaks down like this, when patients get the run around like that letter Art got from the hospital admin, that's when patients go to court.

It's too bad it has to happen that way. But hospitals can't complain about all the lawsuits that come at them and at the same time refuse to openly communicate with their patients. So often the hospitals seem to be hiding things. Sometimes they are. Sometimes they're not. But we often are faced with the appearance of impropriority.

Anonymous said...

The media is a useful tool.
People should contact public affiars shows when something like this happens.
Hospitals and doctors hate bad publicity.
If one person becomes a lot of people...that's an awkward situation and impossible to ignore.
Jack

Anonymous said...

Dr Sherman said" The nurse or tech
could stir up a hornets nest and end up being fired,even if their intentions were exemplary".
Many years ago myself and a nurse
witnessed a female physician physically assault a patient. I ended up being interrogated by risk
management for two hours. It was such a bizarre incident that initially I doubt they believed us.

PT

MER said...

This is the reason, unfortunately, for the need of an advocate while you're in the hospital, esp. if you're undergoing a procedure or surgery or will be in the ICU and unaware of what's going on. You need to have someone outside the system right beside you. A culture where professionals are afraid to advocate for patients and speak up is an unhealth culture. But that's the culture of too many hospitals.

artstump said...

TO MER AND OTHERS…1/3

Wonderful exchange of ideas going on here. Of course we know that there will always be failures of people and systems, and sometimes that’s why we have the courts. Other times we hope that the exchange of ideas in the public forum will help to bring about needed changes. I’d like to touch on a few things this evening and try to explain a little better what I feel is at the heart of misguided privacy policies, at least in the treatment/therapy setting.

But first, as far as Denise’s mouthing the words “Mr. Stump,” you must be referring to the opening paragraph of chapter 37, as I can think of no other instance where that happened. In chapter 37 I was just arriving at the center and Denise, present in the front office, was simply acknowledging my arrival. The person manning the reception area acknowledges arriving patients to let them know that their arrival is noted and entered into the computerized scheduling system. That way the patient knows that the therapists in the back have been alerted that they have a patient waiting. She could have nodded, waved, shouted my name, etc., but as she was standing against the back wall of the office, she found it easier to catch my eye and mouth my name. No offense meant, I’m sure; certainly none taken.

My take on Denise is that she was clearly not the architect of the Shadow Job Program. My understanding is that the hospital originally instituted the program to augment its personnel recruitment efforts. Denise, as “supervisor” of the center’s staff, was given the task of carrying out the program for the various activities that went on in the center. From her ease and familiarity with the accelerator machinery and its systems, I assume that she was promoted up from the ranks of the radiation therapists.

It is also my understanding that the Shadow Job Program had been around for some time and that Denise or someone else had given the same kind of presentation that I witnessed many times over. Until my incident, however, apparently no one had ever objected. Indeed I myself did not raise an objection during the course of the demonstration for reasons stated elsewhere. Denise and the other therapists in attendance simply proceeded with the demo as usual with the apparent acquiescence of the patient, given that no objection was raised.

I felt a particular distrust for Denise initially because of her central role in the incident. But after going over the events and circumstances of that day ad nauseam in my head, I found that I had no problem with her.

In a very real sense I believe that she and her colleagues were victims of the same flawed hospital program that I was. Not in the same way, of course, but I believe that these were good people trying their best to be of help to other people. They might very well have been troubled after the fact by the possibility that earlier patients had had the same agonizing reaction that I did, but had kept silent about it and escaped their notice.

One could argue that Denise’s fatal oversight was that she did not come over and ask me whether it was OK for her to stage the demonstration. She should have. But I’m afraid that kind of faultfinding masks the real issue and makes us miss the point.

I submit that had Denise checked with me, it would have been very difficult for me to have refused my cooperation even though I found the practice outrageously offensive. These were, after all, my caregivers – actually my life-savers – and I had already placed my health and all of my trust in their hands. That level of bonding is what enabled me to lay myself out calmly on a table and be drilled through with unbelievable amounts of radiation almost daily.

art stump

artstump said...

THE CRUX OF THE MATTER …2/3

The tacit pressure to cooperate with the caregivers who are giving you life-saving therapy is overwhelming. Therefore any answer that you might give to a request made of you in such circumstances would be suspect. Your response could be more a measure of the trust already placed in your caregivers than the degree of your comfort or discomfort with what’s coming next.

Your intuitive caution is that your relationship with your caregivers – your life-savers – might somehow be in play at that moment, possibly changing to something subtly guarded or adversarial should your answer not be the right one. Your intuitive sense, then, is to respond agreeably, “Yes, of course, I’ll do my part. Whatever you say,” thereby affirming that your original trust was not misplaced.

Consequently, I have a problem with caregivers asking concessions of their patients in the treatment room when the treatment at hand is part of a life-saving therapy program. At that point in the patient’s doctoring there’s been too much bonding, too much trust, and too much commitment to being a good and cooperative patient. It raises a very real question for me at that point about the patient’s ability to respond honestly and openly to any such overtures.

So while I feel that caregivers should not be “just robots working on objects,” I also believe that they should not be negotiators for the hospital’s business interests. And soliciting a patient for privacy concessions at the point of treatment is unquestionably a negotiating role. In cases where the hospital’s negotiator is also the therapist who will be delivering the patient’s life-saving treatment, the deck is heavily stacked in favor of the hospital having its way.

In my view you should never have the person who is delivering life-saving therapy double as the representative for the hospital in approaching and asking for concessions about personal privacy rights… or about any other weighty matter not directly involved with the patient’s therapy.

art stump

artstump said...

THE CRUX OF THE MATTER…3/3

When a caregiver asks for privacy concessions from a patient, that request is never without context. The patient knows his position to be a precarious one. He knows that he is seriously ill and desperately in need of the life-saving measures that the hospital can provide.

He knows, too, that he is being asked for something that the caregiver wants. However it’s worded, however nicely it’s put, the caregiver is clearly asking the patient for a favor – i.e., the caregiver is negotiating a concession.

If you are that patient and it is moments before you are to receive a life-saving dose of radiation, how does it change things if you refuse the favor asked of you by the person about to throw the switch.

This is not to belittle the patient for not having the courage to speak up, nor is it to denigrate the work of the caregiver who’s been put in the unenviable position of having to solicit a patient for concessions in that patient’s most vulnerable moment. The fact is that the governing quid pro quo behind this sort of exchange in the treatment room is inherent in the situation itself. The practice may be S.O.P. for many hospitals, but it is clearly very wrong.

When the hospital presses its caregivers into the role of negotiator, it places an uncalled-for burden on those caregivers and creates an unethical conflict of interest by capitalizing on the caregivers’ relationships with their patients. Although the use of caregivers assures a more favorable outcome for the hospital, it takes a very real toll on caregiver-patient relationships.

There’s a natural inequity of power that results when a desperately ill patient needs the expertise and resources of a large corporate hospital. It falls to the hospital to handle that leverage properly or not. In some cases we see the hospital at the point of treatment asking just one tiny favor before things get underway. Call it what you will, that practice is loaded with duress, and I submit that most patients under that much duress are not capable of responding to solicitations with honesty and forthrightness.

The ideal in my view is that any exchange between patient and hospital about privacy boundaries must happen as the initial paperwork is being processed, well before the patient has become a patient. That’s the ideal. When patients find themselves at the moment of treatment, they are generally coping in some fashion with the stress of the situation. They are functioning in a kind of survival mode.

When concessions are solicited from patients at that moment, the odds are overwhelmingly in favor of the hospital that the patient will accede to any accommodation asked. My sad fear is that many hospitals know this fact all too well and see it as a fortuitous windfall rather than an example of abusive management.

art stump

Joel Sherman said...

Art, your comments are right on. It should indeed be the case that all permissions needed from a patient be obtained prior to the hospitalization, treatment or procedure. Any permission asked immediately before or worse during a procedure is given under duress. I'm sure it could be legally challenged.
I really can't see why that would be difficult. Some hospitals do indeed give patients detailed form which allow a patient to specify what is allowable and what is not. Generally it would be held that a patient can change their mind at anytime, but a pre-admission or treatment form would allow the patient to set guidelines.
If you ever come to an agreement with Memorial Hospital, I would recommend you have them agree to such a protocol.

MER said...

Art:

I agree 100 percent with your assessment. But it isn't happening and it won't happen, in my opinion, without legal challenges. Many hospitals will have to be dragged kicking and screaming into this ethical arena. As you said, it's easier on them the way it is. I wouldn't call it a "windfall," as you do.
Also, just imagine that initial paper work, where the patient is specific about what will happen to them and will do it -- try to imagine that paperwork following the patient through the entire process -- into the exam room, into the waiting room, pre op, into the operating room? I can't imagine the patient's wishes being communicated accurately all the way through. At the very least, those at the ground level would have to have the paperwork in hand and double check the patient's wishes.
The last time I had surgery, I was asked several times to give them my name, what kind of surgery I was having, which side it was on, etc. Several checks along the way, even in the operating room. I would expect, for the paperwork to work, the same kinds of checks would need to be done all along the way.
I'm not confident in this working, but I agree that it would be the ideal.

artstump said...

To MER from July 20…

One could easily conjure up messy and impossible-to-implement systems to guard patient privacy wishes. That’s what one might expect from corporate bureaucracies. But the whole thing could be so much simpler.

A friend of mine is extremely allergic to aspirin and that fact is clearly documented in his medical record. Even so, more than once while in hospital care he was given aspirin-containing compounds with very nasty results. The last time he was admitted, his wife wrote “NO ASPIRIN” on his forehead, and posted “NO ASPIRIN” signs over his bed, on the walls of his room, and on the room’s door. No problem.

For my last surgery, a hip replacement, I wrote across my target leg with a Sharpie permanent marker “THIS LEG” and “DO THIS ONE” and on the other leg I wrote “WRONG LEG” and “NOT THIS ONE”. Later the surgeon stopped by in preop to sign his own name to the target leg, a practice of his, and had a good laugh about my precautions. Simple can work.

I’ve seen the simplest of color-coding systems used in Sunday school classes for toddlers, so why not in hospital systems for patients. Each patient on admission already receives a wristband ID with various identifying data, so why not add to that alphanumeric data a “Privacy Dot” in one of three colors and large enough to be seen easily .

Red – means access by Caregiving Team Members (CTM) only.
Yellow – means CTM + doctors and med students.
Green – means CTM + doctors and med students + staff in training, media people, hospital tour groups, etc. etc, etc.

That same Privacy Dot also appears on the patient’s chart and on the patient’s doorjamb. A system doesn’t have to be complicated to be enormously effective. Like any other badge or flag worn on the person, the Privacy Dot travels with the patient throughout the hospital and informs any staff member who has business with the patient what the rules of engagement are.

Sometimes simple really does work.

art stump

katherine said...

I would have loved a privacy dot when I was giving birth...although I doubt I would have trusted the staff to respect my Privacy Dot. Women having babies are not entitled to Privacy dots.
The attitude seems to be we're easy targets and are not "rational" to make decisions about interventions or intrusions.
They're not big on privacy in maternity wards.
After constant intrusions which interrupted my concentration and made me feel insecure and upset...my husband was forced to stand outside the door and prevent anyone entering so I felt secure enough to concentrate on the task at hand.
Job done with a capable female midwife...it would have been nice if my husband had been there to see it all.
Giving birth we need complete privacy because the level of exposure is so great. Without that, it interferes with the progress of labor and distresses the mother.
Having spoken to my friends, this is a common problem.
Beware of birthing units where beds are divided by sheets....zero privacy. At least with a private room, you have some chance. Also, make sure your female doctor is covered by another female doctor and you've told the hospital you wish to birth with the help of a female midwife. (if these things are important to you)
One friend was confronted with a male midwife...she refused him and the hospital called a female midwife back to work.
My husband said next time he'd get his brother to stand outside.
We've both now decided they'll be no next time.
There are lots of support groups for women traumatized by the birth process...not so much pain and injury...more indignity, disrespectful conduct toward them, gross privacy violations and total disregard of their wishes and objections.

Joel Sherman said...

I love your system Art. Maybe we should all have our preferences tatooed on our foreheads.
But of course there are many important precautions that also need to be noted on each patient such as allergies, fall risks, and others.
Probably the front page of every patient's chart should have a list of important warnings to keep in mind. These could also be posted on the wall by the patient's bed. If it's an electronic record, it could also be made prominent. I don't see any reason why that system could not be feasible anywhere.

MER said...

Art -- As I said, I agree with you in theory, but I'm not confident in the system. For your "simple" to work, and it certainly could, the system would actually want to make it work. It doesn't. They're not staffed to do it and it's too much trouble for them, and more importantly, it upsets the power balance.
I do believe, however, that one or two enlightened hospitals around the country could be convinced to try out systems like this and become role models for other hospitals. Their business would be increased so much by patients who appreciate this respect that word would spread.
Not in your examples, Art, and in the others that followed, that it wasn't the system making things work, it was the patient or the patient advocate. We can do this. All I'm saying is that it will take a tremendous amount of work and the system won't just go along with it. The changes will be difficult, but the reward for them will be great if they take that one step.

artstump said...

To MER from July 21…

I agree, MER, the system as a whole does not want change. Seems systems never do. But that’s why forums like this are important. You offer or develop solutions in the public arena that are well thought out, practical, and inexpensive to implement. Then you demand “Why not,” and you make that demand very public. Certainly it’s a lot of work, but not so bad when there are a lot of people interested in correcting the problem.

I think you’re right on the mark with “one or two enlightened hospitals around the country could be convinced to try out systems like this and become role models for other hospitals.” I have to believe that of the thousands of hospitals in this country, there are some, probably smaller institutions, that have already implemented similar, simplified privacy monitoring systems because those systems have saved them lots of anguish, lawsuits, and bad press. What say we challenge the folks on this blog to poke around locally and see if we can find one (some)? You never know until you try.

art stump

artstump said...

To Katherine from July 20…

I’m curious whether you ever lodged formal or informal complaints with the hospital, its officers, or its board members about your dissatisfaction with the service that you received. And if so, were you OK with the response that you received. I realize that contemplating filing a complaint is difficult because is seems to invite confrontation… and often it does. But sometimes even corporations want to know when things are not as good as they might be with their customers. I’d appreciate hearing your thoughts on this, if they’re not too personal.

art stump

Anonymous said...

Who cares if it invites confrontation,are you not paying for the service. Would you say
something if your steak was served
raw unless you asked for it raw.
There are now companies like press ganey and others who collect
data on patient satisfaction scores. If you don't complain it
only makes the service poor for
the next patient or when you go
back again.
Personally, it only takes once
for me with a facility to call it
quits. I don't have ridiculously
high expectations as I know most
facilities are busy,however, I do
expect my privacy to be respected
and pain medication shouldn't take
very long to get. Screw these two
things up and there will be hell
to pay.

PT

katherine said...

The hospital administrator spoke to my husband shortly after the birth and told him blocking access to the room was a breach of hospital rules.
How could they monitor patients and ensure they receive the best care, ensuring their safety, if they were denied access?
He said security could have been called to remove my husband.
WE HAD A MIDWIFE IN THE ROOM WITH US...
We didn't need any more monitoring or supervision.
He said that wasn't for us to say as we have no medical training.
My husband kept pointing out we had a midwife with us who was quite capable of handling the situation and she could have called for back up, if necessary.

He also said people walking into the room without knocking was interfering with the birth process.
The HA said women giving birth are usually incapable of responding to knocks.
BUT women in labor are rarely alone in the room and someone else could go to the door. (and the knocks should be kept to the bare minimum)
My husband also pointed out that perhaps, they should review the system whereby women could be assured of privacy unless they needed extra assistance.
It was pointed out fairly bluntly that the current system had presented no problems for OTHER PATIENTS.
To sum up...WE were the problem.
WE were being unreasonable.
ALL of these people were entitled to enter without knocking and disturb us.
It seemed to be junior doctors, medical students and others calling in to see "how we were progressing"...
Fine until you walked in!
Whether its an educational or supervisory thing or a combination...it caused me to feel insecure...never knowing when someone might barge into the room.
I refused multiple internal exams...they increase the risk of infection and are uncomfortable and embarrassing. My midwife did the bare minimum respecting my wishes.
Women really need to do their research before settling on a birthing facility.
Getting it wrong = a very bad experience.
Our experience was more an annoyance....I've heard FAR worse stories from other women.
Mr Stump, I was sorry and disgusted to hear of your treatment...but sadly it doesn't really surprise me.
We haven't taken things further...I guess we felt maybe we had done the wrong thing. Perhaps that's just what you have to put up with if you choose to give birth in hospital....work within the system.
Unfortunately, very relaxed options frighten me...if something goes wrong, there are two lives at stake.
Surely...there is something in-between that would keep all parties happy.

artstump said...

To Katherine from 7/21…

Katherine, thank you for filling in some of the storyline. Birthing is difficult enough without having to do battle with the hospital at the same time. I think you’ve got it exactly right with your observation that “Women really need to do their research before settling on a birthing facility.”

There is so much to contend with during the birthing process. Although it’s a planned event in one sense, everyone must be prepared for the unforeseen. And in that sense your caution about “very relaxed options” also strikes me as quite insightful.

On the one hand I can see the hospital’s position that it needs to have access and involvement, given its underlying liability exposure. On the other hand that need can never be license to invite in the neighborhood. I know from my sister’s birthing experience that issues of access, midwifery, family involvement, etc., are not new to hospitals. Some of them in fact encourage pre-birthing conferences with hospital reps as a great way to get everyone on the same page.

As an aside, I once had a long lunch in Denver with 3 women, all of whom were mothers, and the topic of the day was birthing. As I listened to all of the harrowing things that can and do happen while giving birth, I felt so lucky that I would never have to face those challenges. After lunch, however, I was left with a lingering sadness as I realized that I would never have the opportunity to face those challenges. Indeed I will never know the wonderful miracle of life the way that half the human race knows it. That’s just my lot in life.

art stump

katherine said...

Mr Stump,
Thank you for your comments.
The miracle of life came into sharp focus AFTER we left the hospital.
Unfortunately, the medicalization of pregnancy and birth overwhelms many women.
The medical exams are invasive and are followed by tests, scans and more checks.
I had a normal pregnancy, but felt more like a patient.
I envy my grandmother in some ways.
She gave birth at home (in the UK)with an elderly and kindly midwife in attendance. (herself the mother of 8 children, all born at home)
She told us giving birth was a challenge, but she felt safe and secure.
Her privacy and dignity were fiercely protected...even our grandfather was chased away and told to wait downstairs.
The midwife made pots of tea and put wood on the fire...it was just the two of them...working together, laughing, talking and finally, crying. (when the baby was born)
Childbirth can be a fairly harsh experience today.
Women talk and violations of privacy and dignity come up time and again.
Medical science has made childbirth safer for mother and baby....but we've paid a price for that security.
Some women may think we ended up paying far too much.
I can understand why some women prefer pain and some uncertainty, instead of very insensitive maternity services offered by some hospitals.

swf said...

The terms society and institutions seem to often be viewed in the same vague light, as if they are intangible thoughts of the unwritten elite far beyond our concepts and/or control. More of an aura of acceptability rather than a concrete existence. We are society. We are institutions. We own our own bodies despite assumptions otherwise.
And the only 'assumptions' I believe are valid are my 'assumptions' that these people 'assume' too much priveledge.
We need to stop the entitlement madness.

swf said...

Also love the dot idea! However, just one color blind Tech could make someone the most watched video on Youtube.....

Anonymous said...

Art, I read your book several months back and had posted some of your qoutes here and elsewhere. I live fairly close to S. Bend and am aware of the instituion. As I reacall you also told of a visit to your urologist where you had to have a csyto or some exam. As I remember it you made a statement about a female nurse or PA who was present and did next to nothing other than turn on and off the water or some similar minor task. I read it to mean that you felt the procedure could have been just as easily completed by the urologist without the woman being present, that this constituted another example privacy violations. Did I read this wrong?
Thank you for having the fortitude to step up and address this and not just let it drop. I am not big on law suits but I feel they are the proper response when all else fails. I am glad to see you are willing to push this through your suit, it has the potential to make a difference. I bought and read your book, then I sent it to the patient advocate at our local hospital, I have sent additional copies to facilities in the area. As stated above the book is something all providers should read...alan

Joel Sherman said...

I have moved several posts from here to the improve privacy thread, as I think they are more on topic there.

artstump said...

To Alan from July 26…

Thank you for your encouraging comments about the book.

I would note first that the option of a suit is currently just that, an option. In chapter 20 I wrote about my meeting with the hospital’s “Patient Representative” and included the following observation:

“I had doubts that any isolated letter of complaint about any matter would get much traction with the Hospital. I fully expected that the Administration’s corporate mindset would automatically temporize this sort of thing, chancing that a little intransigence on their part would wear down the complainant and that in time the problem would simply go away.”

So I had no illusions about the difficulty of bringing a civil action against one of the community’s major institutions. The usual approach to exploring options of this sort is to meet with good attorneys to go over the various strategies available, to assess the odds of success in your effort, and then to be prepared to devote a substantial portion of your time and resources over the next “however long it takes” to do battle with the giant.

I did all of that, but I also felt that I had a further option, that of writing a book. For me that was the prudent first course of action: to see what impact a book might have. I have great appreciation for readers such as yourself who have used the book in some way to take made a statement in the situations that you have encountered.

On the other matter that you mentioned, the cystourethroscopy procedure that I wrote about in chapter 48 raised questions about the presence of a young woman during the procedure, when in fact all she did at the doctor’s bidding was turn the stopcock on the water bag. I could have done that.

But that’s the simple and uninformed perspective of a patient spectating a procedure on himself that came off without any complications whatsoever. In a cystourethroscopy the urologist generally has both hands occupied, which is not to say that he couldn’t lay aside to instrument, the cystoscope, and tend to water bags and the like. But if something unforeseen had happened and he had needed to keep both hands on the controls, I might have been at risk.

Bottom line, I did at the time and still do have complete confidence and trust in my urologist. If in his experience this is the best and safest way to carryout a bladder inspection on a male patient, then that’s the way it will be. My place would not be to tell him how to conduct a procedure of this sort, but to raise whatever concerns I had about the procedure and about modesty issues at the time that we initially discuss the procedure. Let the doctor suggest options. If I find the doctor’s response inadequate or his attitude dismissive, I have the ultimate option of finding another doctor.

As it turned out, the girl’s presence in the cystourethroscopy procedure, given what she contributed, was borderline frivolous. But given an unfortunate turn of events in the procedure room, her presence could have critical and even life saving.

art stump

Joel Sherman said...

Art,
Has your book gotten substantial publicity locally and caused Memorial Hospital at least some bad publicity? Was that one of the major reasons for writing the book? If so that wasn't clear from reading it.
I agree fully with your philosophy in your answer to Alan. I do not object to opposite gender care if medically necessary for whatever reason and done respectfully. I do insist on equal consideration, the same that should be given to any patient, no matter the gender of those involved.

MER said...

I'm trying to get into the mindset of an institution that would allow and a medical professional that would carry out the bringing in of a 16-year-old high school girl into such a private procedure as Art describes. I can't really see how it could ever, under any circumstances, be defended. Here are some reasons why they would do such a thing:
The assumption that any patients complete lose modesty rights when in the hospital.
The assumption that men just don't care one way or the other.
The assumption that be agreeing to the treatment the patient has agreed to absolutely anything else we choose to do -- anything.
The assumption that we do it because we can regardless of anything else.
The assumption that neither the patient nor anyone else in the room will object. If we can get away with it we' do it.
The assumption that the perceived needs of the insittuion supercede any and all perceived modesty nePumption that...what else?
Am I missing some others? I can't see any medical professional defending any of those reasons. Perhaps that's why we see so few of them on sites like this giving us their points of view. They have to argument, no defense, no eithical stance.

I would pay to sit down with Denese, the women who bright that girl in, and probe her thinking. What could possible be going on in her mind? I would enjoy hearing the rationalization, the twisted logic, the total self-focus of such a defense. If anyone would like to play Devil's Advocate and attempt to reproduce a defense of such an action, I would like to read it.

Joel Sherman said...

Well MER, as I think I've said before, Denise's excuse would be that she was carrying out hospital policy.
The hospital's excuse I can only guess at. Obviously attracting employees was one. Remember that historically it was not unusual to have high school girls involved in health care. Even beyond candy stripers, high school girls have always been introduced to nursing. I'm sure many high schools promoted it as one of the viable job options girls had. Some hospitals today have programs introducing high school students to medical opportunities and both boys and girls are now included. This hospital's grievous sin was in not asking permission to bring in the girl as essentially a voyeur. That is different from the student being one on one with a nurse who is showing her around with the patient's permission.
Clearly also times have changed. Decades ago girls were thought of as being nurturers in training to follow in the footsteps of their mothers. In our present 'girls gone wild' culture that assumption can no longer be made.

Anonymous said...

MER, I think sometimes we're treated badly to punish us for being "difficult" patients. Its possible because the doctors and nurses are in a position of power and we're terribly vulnerable.
A friend was left naked on a trolley awaiting an emergency c-section.
The nurse removed her gown and then left to "apparently" find a clean gown and sheet.
She felt she was being punished for giving up on labor after 15 exhausting hours.
It was the lowest point in her life as medical staff walked by and looked at her.
The nurse returned with a smirk on her face...seeing my friend crying...her work was complete.
Jan

MER said...

Response to Jan: I'm convinced that the kind of "punishment" you described, though the exception,happens more than we suspect or would like. I think the whole issue of power and control is a bigger issue than we may realize. I wonder to what degree the power and control issue is covered in medical education, especially with nurses and cna's. Teaching that it exists is one thing; teaching stragegies to avoid using it adversely is another. In an earlier post I referenced a book on nursing and sociology that had a chapter on Nursing and Power, well written.

Response to Joel: I still can't figure out the thinking process. I think there's tremendous audacity in even asking a patient's permission to have a 16-year-old high school student observe an intimate procedure as a recruiting tool. It's unethical and inappropriate. Yet apparently it's SOP for some hospitals. I do understand what you saying about high school girls pushed into nursing years ago -- but that was also at a time, remember, when there were male orderlies to handle many intimate procedures for men. These high school girl interns or candy stripers were pretty much kept away from male procedures like that. It wasn't considered appropriate. As I've tried to trace in past posts, major changes in the modesty of patients (esp. men) occurred after WW2, through the 50's and came to be accepted by the 60's and 70's. Men were expected to lose their modesty while being naked with other men. But there was a strict, tacit society agreement that women were forbidden during these nude male rituals (like draft exams and nude swimming). Things have changed. The kind of violation that Art described would never have happened before these changes became firm.

Anonymous said...

I must say that it just tickles me pink when I hear or read about
someone being terminated for violating someones privacy or a
hipaa violation. The first thought
that comes to mind is how stupid.
Things have certainly changed
though since say the 70's and 80's
in regards to behavior. It was common to see hospital employees
smoking on the job,even patients
smoking in their rooms. At many medical facilities smoking is
prohibited anywhere on campus.
Administrators are now more
than ever concerned about patient
satisfaction scores. In the 70's
if you have to complain while hospitalized there essentially
was no process.
I believe change will take place for all the concerns regarding gender fairness.


PT

Anonymous said...

Art
Whether you end up filing suit or not, the presence or even mere mention of an attorney gets attention. I got tired of women using the mens restrooms at a large concert venue. I wrote the venue and sent a registered letter stating I had talked with my attorney and was putting them on notice that should it continue and a female be assulted in the restroom they now had "specific knowledge' which made them liable. Further should the men's restoom be full my attorney felt I could now legally use the womens restoom since there were aware of opposite gender use of the facilities and by not taking actions to remedy it were expressing consent....I got a letter back acknowledging my notice and referencing my attorney's comments...next time I went...a guard at the doors to the restroom...no one likes attorneys...esp when they may cost you money win or loose....alan

artstump said...

To Joel from July 31…

Joel said: “Has your book gotten substantial publicity locally and caused Memorial Hospital at least some bad publicity? Was that one of the major reasons for writing the book?”

No, that was not one of the major reasons. My original intent in writing the book was to produce an “information rich” account of my cancer experience, one that would offer readers three things: (1) meaningful behind-the-scenes looks at the medical and technical aspects of my treatment, (2) frank observations on the relational dynamics between me and my caregivers, and (3) painful insights into the deeply personal toll that the hospital’s betrayal of trust inflicted on my own psyche.

Chief among all the motivations for writing the book was the need to celebrate the wonderful caregivers who handled me with such extraordinary kindness. However, an important part of that storyline was also the arrogant misconduct of the hospital in casually setting aside my most fundamental rights to privacy. While the book’s primary purpose, then, was not to lambaste the hospital with some grand exposé, I was aware that by relating the particulars of my story, the hospital’s questionable patient privacy practices would be brought to light and maybe raise an awareness of the potentially devastating impact that such self-serving policies can have.

Indeed, in the book (chapter 15) I quote a colleague of mine, a former Navy Seal, who summed up the truth of my situation perfectly: “It could have happened to anybody, but it didn’t. It happened to you. It’s up to you to set it right.”

I agreed with that pointed assessment. Again from the book: “He was right, of course. My number was drawn, and ultimately it is up to me to set it right, however long and however involved that process needs to be.”

So in the final analysis it was never my purpose to use the book to wage war on the hospital. Rather it was my intention to “set it right” and to attempt that correction not just for one hospital named Memorial, but for hospitals and institutions generally. In that respect My Angels Are Come was hoped to be an instrument of change, a small part of the group effort begun by many other concerned people worldwide.

art stump

Joel Sherman said...

Thanks for the response Art. That's about what I would have thought from reading your book.
As best I can tell however Memorial Hospital has suffered little adverse publicity. Has any part of the story made your local paper, the South Bend Tribune, I believe? If so I couldn't find any online reference to articles. That's a shame. More local publicity would do wonders in permanently solving the issue so that it doesn't reappear.

Anonymous said...

Art, I had a odd psa result and was waiting for a second test, my DR suggested I may want to get a biospy to be sure...I e-mailed them and mentioned i had read your book and wanted to know a couple things, what was the policy for students and could I get a male tech if I wanted one. They indicated I would be asked prior to any student partcipation and would have the right to decline, they also indicated I could get a male tech if I made my wishes known. They did not respond or reference your book....not surprised, but interesting...alan

Natalie said...

I think people should go on talk shows and let us all know about the disgraceful way they were treated - I think we all need to hear that sort of information.
Embarrass the hospitals so there are consequences.
If they can silence us, pretend it didn't happen or sweep it under the carpet, they certainly will...and nothing will change.

MER said...

Interesting idea, Natalie -- but I would suggest that this subject, for men in particular, would not be considered politically correct. That is, the ideology of the current media embraces "gender neutrality" and complete openness with bodily issues. Media stars, of course, have their personal preferences, but they'd never let that be known. In public they'd laugh men off the air waves for being uncomfortable with opposite gender care. With the large numbers of women entering healthcare, this modesty issue when it comes to men's feelings has become an access issue, a women's right's issue, a right to work issue. You might some conservative talk shows that would take up this subject, but not the mainstream media.

Joel Sherman said...

Chris posted this link under the male modesty thread, but it is also right on topic here.

I posted this response under that thread as well:

Interesting article Chris. I've read only about the man with prostate cancer so far. Two items struck me. The first is that the urologist stated that when he first started practice, he was embarrassed to ask his patients about their sexual function. Why pick urology then? That's like a surgeon saying that he can't stomach the sight of blood. Amazing that physicians can be so ill at ease with sexual matters.
The second point is that the same physician thinks that gender preference is bias and that men will take some years to adjust to female physicians for intimate care. He has no clue as to how men and patients in general feel embarrassed about intimate care. That's amazing for a specialty that does mostly intimate care. I think this surgeon should have picked another specialty.

artstump said...

To Alan from August 2…

Your approach sounds like an excellent one. I would only add that whatever your concerns or preferences about treatment staff gender, I think you’d do well to confirm those assurances in writing to your doctor prior to your receiving service, specifying that your letter is to become part of your permanent “file.” Anyone out there working in a practice might think better of this, but my impression is that a practice’s ready defense or explanation for the disregard of a patient’s wishes is that “somebody else must have gotten that note, you should have said something.” Of course, you would never expect a practice to adjust their workflow just to address your concerns exclusively, but if they cannot accommodate your requests, they need to make that clear up front. You then have the option to find another provider.

art stump

Natalie said...

MER, we faced all of that...
Women were laughed at for years, even those who had been sexually assaulted by doctors and other males.
Other women would attack your preference for a female doctor...perhaps, they felt threatened - if they had to see men, so should you....
Or, they felt mature facing men for intimate care - we were silly girls.
It took years for things to change...many years.
As more and more people feel brave enough to refuse opposite gender care, the more pressure we place on hospitals etc to acknowledge and accommodate our needs.

artstump said...

Some thoughts and questions about the role of law in patient privacy violations…*

PART 1

I’m struck first of all by how infrequently privacy violations in healthcare are followed by formal action on the part of victims, either by filing a formal complaint or by bringing legal action.

We are sometimes given a “Patient’s Bill of Rights” as we enter a hospital or healthcare facility, a reassuring pamphlet crafted by the institution’s marketing and legal departments. But the “rights” enumerated in such pamphlets are not actually rights. Rather they are a list of comforting assurances put forward by the hospital. They may later find a place in civil actions for breach of contract, but they are not statutory rules that regulate the behavior of the hospital or healthcare institution. They are not law.

We all know that people and institutions are capable of outright criminal behavior and that both are subject to the sanctions of criminal law. And we know, too, that in some cases there are civil remedies available in contract and tort law for those patients with enough willpower, resolve, and resources to pursue them. But what about statutory regulations that are specific to medical practice and healthcare – is there a Patient’s Bill of Rights in the law?

For purposes of comparison we might look at the attorney-client relationship. In our society there exists a relationship between attorney and client that protects the confidentiality of their business, i.e., protects the privacy of the client. That relationship is seen as a duty for the attorney and has rules that vary by state. Whether violations of that confidentiality are actionable under criminal law or are left to civil litigation, I don’t know. But I would expect in any case that violations would have unpleasant consequences for the attorney, at the very least a blackening of the attorney’s reputation.

Similarly we speak of a special relationship between doctor and patient, one that protects patient confidentiality, i.e., one that protects the privacy of the patient. We like to think of that relationship as a duty incumbent upon the doctor and comparable to that of an attorney. But what exactly are the consequences of privacy violations in the case of doctor and patient, or in the case of nurse and patient, or medical assistant and patient, or staff and patient, or institution and patient? And where along that food chain does violation suddenly go unnoticed altogether?

My sense is that in the healthcare professions today we are left with something of a modern day honor system when it comes to guarding patient privacy. And in an age of questionable ethics and morals in professions of every sort, it strikes me odd that the enforcement of patient privacy rights might be relegated to the anachronous concept of personal honor.

art stump

* I consider firsthand violations of patient privacy beyond the reach of the Department of Health and Human Services and its HIPAA mandate.

artstump said...

Some thoughts and questions about the role of law in patient privacy violations…*

PART 2

The Hippocratic Oath itself is a badge of honor, of course. And it is a powerful statement for doctors. But it is not statutory law. And while there are no doubt many highly principled doctors who have devoted their lives to healing people, healthcare nowadays is not what it used to be.

In healthcare today the work of every doctor must be leveraged by regiments of staffers who see to it that prescribed treatments and administrative support work are carried out. In the final analysis, then, is the behavior of all of these people to be governed only by an outmoded system of honor? Apparently it is.

When one considers the enormous impact that privacy violation can have on patient wellbeing, one is compelled to ask why it is that these violations happen in the first place: are they the product of indifference, or incompetence, or indulgence in the privilege of power. My read is that today’s healthcare bureaucracies tend to borrow a little from each of these failings, and that in the end their ranks are basically a workforce governed by in-house honor systems of the employer’s choosing and convenience – at least until an outraged patient with a team of hungry lawyers calls that employer to account.

Which brings me back to the question, is there statutory law that specifically addresses the manner of the practice of medicine. I’d welcome some insightful comments from knowledgeable readers out there who could maybe clear away the fog and shed some light on this for those of us who have had unsatisfactory or traumatizing experiences with privacy violations in healthcare institutions.

art stump

* I consider firsthand violations of patient privacy beyond the reach of the Department of Health and Human Services and its HIPAA mandate.

Joel Sherman said...

Art,
I can't give you a legal summary, and it would be different in every state. Most states do have laws to protect patient privacy. After all doctors may use that right in a courtroom to avoid giving information about a patient. In general there is little federal law despite HIPAA, but HIPAA is gaining strength. If this administration's bills pass, there may be even more potential penalty for violations.
But a pure modesty violation is barely recognized under the law as being compensable. In your case, there were both violations. Not only was your body exposed to the girl without your permission, but also your identity and medical condition. That is certainly compensable, but as you suffered no monetary losses, a major lawsuit isn't necessarily worthwhile. I'm sure you've talked this over with your lawyer.
I have mixed feelings about whether modesty violations should become a formal matter for tort law. Egregious violations such as yours certainly should be, but there are so many minor and inadvertent violations that it could be a nightmare for the practice of medicine.

Anonymous said...

Dr Sherman
I agree..however...sometimes its the lawsuits that get attention, one hates to see more cost into the system generated from lawsuits...but it seems to be the only thing that gets peoples attention. I also find it interesting that letting a paper slip into someones sight or saying something infront of someone can cause all sorts of trouble for providers, yet something that may traumatize a patient or prevent them from seeking medical attention in the first place is no problem...why, because one has legal ramifications and the other doesn't...sort of like which is worse, alcohol or pot...doesn't matter cause one is illegal....

LJM said...

Why should the medical profession be excused for privacy violations?
Even in an emergency situation there should be practices in place that protect a patient's dignity and privacy.
I have never understood why masses of people need to surround a patient when they enter an emergency dpt...they just get in each others way.
It's like a bunch of buzzards hanging over a meal...
In NO other setting would privacy violations be tolerated...they only happen in medicine because people think they're immune from the rules of decent society...they're untouchable.
There is NO excuse...

Joel Sherman said...

Anonymous of August 10, I agree that lawsuits may be the only way to get attention. In many instances though the threat of a lawsuit is sufficient if your goal is to modify behavior and not obtain monetary damages. The problem is in separating serious violations from the accidental or trivial. It's too easy for anyone to claim mental distress in an attempt to hit the jackpot. Still though it is feasible to separate serious violation like Art's which should be compensable from others less serious.

LJM, how many people may be required in an ER is highly variable depending on the situation and urgency. I don't believe that throngs of people are present routinely. That number of personnel just isn't available in the average ER.

Anonymous said...

Back in 1980 while working at a
trauma 1 county hospital I vividly
recall many unnecessary observers
during level 1 traumas. Such observers were registration clerks
which you'd think they'd have something better to do.
I'm sure in large level 1 facilities that problem even exists today whereby even in the late 90's I've seen 40 people stand in on one trauma and I'm
not exaggerating.

PT

Joel Sherman said...

PT, I too have seen many people surrounding a patient, some of whom have clearly no role to play. But I've only seen it in cases of major trauma or cardiac arrest. The patients have always been very ill.
I have never seen it for example with a teenager in the ER for a sore throat.

MER said...

Major trauma or not, Joel, people who have no business being there shouldn't be there. I'm you agree. I understand human curiosity -- same reasons people stop at car accidents and want to see the bodies. But there needs to be somebody in these trauma centers who takes control of who's looking on. If it's just a voyeur situation, then out they go. If they're trauma doctors or nurses who are learning from the case, that's a different story.
With a minor case like sore throat, there's really no human curiosity, and real professionals would not be very interested.

Anonymous said...

Joel,

And why is it relevant how ill the patient is? Its anlogous to those who film patients in emergency and can't get consent until after because they are too ill to give consent at the time. By then of course, its too late as their privacy has already been breached in my view.

Chris

Smith said...

Lets all agree. There are way too many men that have been humiliated. Can we spearhead and start a lawsuit? What are your thoughts?

Joel Sherman said...

Don't assume the worst motives. When very ill patients arrive at the ER, a lot of input may be needed. But it's usually not clear at the onset just what is needed. People who are not needed gradually leave. I have seen people being asked to leave, not because they are voyeurs, but because the space has become too congested to work efficiently. Some employees may choose to work in ERs for the drama of these situations, but that doesn't mean their motives are bad. We probably wouldn't have firemen or policemen if being attracted to these situations didn't appeal to many people.
Personally if I'm critically ill from potentially reversible causes, I won't object to anyone who's trying to help.

Anonymous said...

Dr. Sherman
Unfortunately or fortunately depending on how you look at it...most of us get our ER experience from TV or at worst from minor less life threatening experiences. The "life in the ER" type shows show a lot of people milling around just watching, from EMT's who brought them in, firemen, policemen, etc. Now if there is a legitimate reason thats one thing....but it appears some of these have nothing to do with the patients care after they get in there....whether a policeman or fireman is drawn to the situation or not has nothing to do with it, it does not trump the patients right to privacy and to choose who is present....I think that is more the issue. And as this thread indicates providers are often very free with allowing those not directly involved in patient care to be present. Whether that be a high school student shadowing, a policeman or similar hanging around, or a drug rep or even student Dr. observing....it is a violation of the patients rights, the right to privacy that only they have the right to give up...especially when it is not directly related to care for their benefit....what you describe is understandable....and I like you would err on the side of having people there that MIGHT help me if my life is on the line...but a policeman most likely won't be much help...alan

artstump said...

To Joel from August 9…

Thank you for the keen observations. For one thing, you remind me that there is a slippery distinction between privacy protection and modesty protection. They are often the same conceptually, but in many practical contexts they are quite different.

Also, I’ve seen articles about the new teeth in HIPAA, but the program still appears focused on information systems and unauthorized disclosure of data from those systems. HIPAA may be maturing and evolving into something different, but it looks as though face-to-face personal privacy violation is still not its thing.

You make a good point, too, about lawsuits and compensable damages. My lawyers have counseled me on the difficulties of bringing a successful action, a task even more problematic when the institution challenged is the major healthcare provider for the community that makes up the jury pool.

I agree about the difficulty and necessity of separating serious privacy violations from those that are incidental. I’d hate to see a move toward micromanaged doctor-patient interactions; that’s not workable and not good for doctor or patient. Besides, I personally feel that the more scripted the doctor-patient relationship becomes, the less room there is for trust. And in my view trust is an essential part of good medical care.

If we as patients seek change in privacy rights enforcement, our attention must first be directed toward examples of blatant, self-serving disregard for patient privacy. Our effort must (1) advocate that those privacy rights exist, (2) insist that there are consequences for the violation of those privacy rights, and (3) not let powerful institutions avoid accountability because the enforcement of privacy rights is complicated and inconvenient.

It bears repeating, I think, that the gravity of life-and-death circumstances makes most other considerations seem trivial, as it should. But the vast majority of doctoring does not involve life-and-death urgencies, and I suspect that a do-nothing approach by patients in those circumstances is an open invitation for institutions to serve their own interests first.

In the end we patients must be more than passive recipients of our own healthcare. When we are aggrieved or violated and raise no formal objection, the healthcare institution’s natural reaction is to simply carry on as usual. If, on the other hand, each and every patient with an objection would assume the obligation to voice that objection by filing a formal complaint, the collective nuisance could start a wave of change that would surprise us all.

art stump

Prue said...

There have been problems with male orderlies (and others) because of a lack of care with unconscious patients.
Voyeuristic people and worse...sadly, find their way into jobs were they'll have access to vulnerable people.
As a young lawyer, I worked in a Unit within the Office of the DPP and handled quite a few cases of assault by male orderlies...left with an unconscious female patient.
Of course, most of these assaults go undetected or unprosecuted...(the offender is simply dismissed and usually ends up in another hospital)
We even had issues with morgue attendants interfering with bodies. (resulting in changes in that area and the creation of funeral homes only employing female staff)
The interference was with female bodies, but there were also cases of male attendants being disrespectful toward male bodies.
As a result, my father's death was handled by one of these funeral homes.
I found it all terribly depressing and ended up asking for a transfer to commercial crime.
Exposing a patient without the strictest of controls faciliates and encourages these sorts of people.
If lots of people are permitted to observe an exposed patient, you've done the wrong thing by the patient and contributed to the problems in the system.
Every patient should be protected from unnecessary exposure and spectators (medical or otherwise)...one or two should assess the patient and then only required personnel should be admitted...
The chaotic surrounding of an unconscious and exposed patient is unnecessary and feeds the predators in the system.
I once heard of an unconscious patient having a urinary catheter inserted with 12 people watching including medical record staff - totally unacceptable!

Anonymous said...

Trauma patients are pre-registered
when entering the emergency room and are assigned either a number or a trauma name such as bluebird 55. That said there is no reason for registration to enter the trauma room. Why should they as
ems usually establishes identification while enroute to the hospital.
As if someone with a severe head injury is going to answer questions
regarding next of kin or a street address if you get my drift. Trauma
names or numbers are simply a temporary substitute to get them in the system for lab, x-ray ct,respiratory and other critical services. Yet I've seen registration in groups waiting for a trauma to arrive just to gawk.
A trauma should be considered a
private area much like L&D whereby
only required necessary personel
are allowed. Ever notice that er
registration personel are all female. In all the hospitals I've
worked at I've seen only one male.


PT

swf said...

Dr. Sherman:
Have you had any experience with an actual Patient Advocate? If so, would you consider it a viable position or just a 'token' attempt for facilities to cover their bases?
I have been checking into certifying in this area and this is what the schools told me:
I need a small med background and usually a CNA with anything else will do. From there you specialize in the type of advocate you want to be. This varies from paid position,volunteer,insurance advocate, and patient rights.
It sounds as if it might actually be a (small) way to help and perhaps get more knowledge on what it takes to really change the 'system'. (?)

Joel Sherman said...

SWF, there are patient advocates that work for hospitals who are usually nurses in my experience. They do try to resolve problems, but I think you can assume that their prime concern is the hospital.
Advocates that are independent of hospitals could have quite varying backgrounds as you suggest. I have no personal experience with them. Never had a patient who used one. The more they know the more useful they can be. Somewhere on this blog I think we had a link to an article about them. You can probably also google info.
Might be worth devoting a whole thread to.

Yasmin said...

To be effective the patient advocate would have to be employed by the patient...medical/legal background would be perfect.
I'd be prepared to pay quite a bit for that piece of mind - you'd usually only need an advocate in L&D or surgery.
I was sexually assaulted by a male colleague at a work function - he'd been drinking heavily (NO excuse) and there were several witnesses to the assault.
In those days there were no sexual harassment officers.
I felt isolated and deeply embarrassed and confused - do I speak to a lawyer?
Do I make an official complaint to the directors?
My immediate boss apologized and it was clear he wanted it to be left there....
I tried to move on, but all these years later it still annoys me that he got away with it scot-free.
I found out later that he had many other victims - he'd drink to excess and then assault women.
My point...if you have a designated person who acts for the victim...there is an effective follow-up - someone to advise and assist the victim and to act on his/her behalf.
Sometimes victims are embarrassed to speak out about the assault.
Many victims are hand-picked...the most vulnerable - the youngest, shyest...
In that way, these matters are addressed and thereafter, less likely to happen....
Patient advocates looking out for patients would work in exactly the same way.

MER said...

Two books that talk about patient advocates:
-- The Hospital Stay Handbook by Jari Holland Buck. Although this book give some great advice, it is a harrowing story representing a serious illness and a worst case situation. Ironically, the author's husband is a lawyer. He gets seriously ill and they have no advance directive. She has to be his advocate and, frankly, waht she experiences is horrible. In the book, she describes an encounter with a hospital patient advocate. She makes it clear that the advocate was really working for the hospital. It's interesting to read what she went through during that experience.
-- The Medical Mentor by Bob Sheff, M.D. This is an excellent book, kind of a how to work your way through the system for patients. It covers everything from dealing with insurance companies to advance directives and patient advocates. Great book.
I would not hesitate to contact a hospital patient advocate, but I would not really consider that person an advocate for a patient. They're paid by the hospital and their main goal is to resolve a conflict. The resolution they come up with may or may not be in the patient's best interest.
JOEL -- If you decide to run a thread on this topic, maybe you could get one or both of these authors to participate.

artstump said...

To MER from Aug 15…

Patient Advocate, Patient Representative, Ombudsman, each hospital has its own title for the position, but I think you’re right about their purpose. You said:

“They're paid by the hospital and their main goal is to resolve a conflict. The resolution they come up with may or may not be in the patient's best interest.”

A conscientious Patient Advocate would probably see her work as representing the patient’s interest to the benefit of the hospital. Many years before my wife worked as a hospital Ombudsman, so when my incident happened and I was beginning to press ahead for a response of some sort, it was important to me that I first understand the ground rules for this hospital’s Patient Representative position. In chapter 20 I recount my meeting with the hospital’s Patient Rep and excerpt from that account as follows:

“I began our conversation by first asking for a brief overview of her position, the confidentiality assumed in our visit, and her advocacy priorities, patient vs. Hospital. She informed me that she was a Hospital employee but advocated first for the patient. One of her primary responsibilities was to identify patient problems in the Hospital and initiate corrective responses.

“According to Lisa she needed a patient's authorization before she could communicate with others on matters that she and the patient might discuss. Otherwise she was restricted as to what she could accomplish. In such a case, that where she had to keep close a patient confidence, she could still advise the patient about what to do, whom to talk to, etc.

“I then summed up for Lisa my understanding of the overview that she had just given me, essentially that whatever we might discuss was strictly confidential unless I gave her specific permission about what to divulge and to whom. Absolutely, was her response.”

My understanding is that the position of Patient Rep basically serves as a lightning rod for the hospital that employs them. The Rep intercepts problems and grievances early on and provides an official listening ear. Depending on the situation that alone may suffice for both patient and hospital.

I can’t imagine that a Patient Rep would ever have line authority to carry out corrective measures. Rather her responsibility would be to communicate to others in the hospital the particulars of a problem that has come to her attention. Her role is vital to the hospital and to patient relations, but her advocacy is only the first stop for patients serious about pressing matters forward.

art stump

Joel Sherman said...

There's been so many thoughtful comments here recently it's hard to respond to all.
I find the comments about voyeurs in the ER and elsewhere to present a difficult problem. I should add that I haven't worked in an ER in decades.
Alan I think policemen are only present in clinical areas if the patient may be arrested and/or is out of control. I could be wrong though.
Prue, I find your post the most troubling. What's DPP? I take it you worked in a large urban area. I'm personally aware of no cases that have made the papers where I live. How common was this? I've never seen orderlies abuse anyone.
Unfortunately there is no practical way of screening people to ascertain their motives for entering a medical field and likely many people do it for motives that are less than pure. That applies to everyone, orderlies, CNAs, nurses, and doctors. Both men and women may be guilty.
I also know of no practical way to ensure that only appropriate personnel are present in emergencies. Many ERs are literally battle zones where the presence of an unneeded ward clerk or voyeur is the least of their problems. But I'm sure really tight organizational control would minimize the problem.

Don't know if there is sufficient interest for a patient advocate thread yet. Maybe. Please post or email to me the references you're aware of.

Anonymous said...

PRUE if you want to read somereally troubling comments about providers violating patients and when supposed caregivers become voyuers go to all nurses.com and search whoa inappropriate. An unconcious young male is being treated and numerous female nurses take turns checking out how well endowed he is. As troubling as the act it, the fact that many of the female nurses who read and comment on the incident advise against reporting it. Thus the us and them mentality, and while it wasn't physical assualt, it was definately a violation and one that providers were suggesting not be reported...do you think if these were males they would have been reported? Think there would have been any question....

I actually had a personal experience with an patient advocate. I have previously related an experience with a testicular ultra sound. I picked up a pamplet at the hospital where it occurred. It was on a patient advocate employed by the hospital, as you indicated they stated they were employed by the hospital but worked for the patient. I didn't get a response from my first attempt (e-mail) so I went over her head to the next person, the advocate contacted me and said she never got my e-mail. long story short, 3 different people contacted me and they said they ended up changing protocol where appointments made through central scheduling had a list of proceedures where they would ask the patient if they had a gender preference....I haven't had to use them so I can't verify if they did or didn't but they seemed sincere...yes they work for the hospital, but the hospital has a vested interest in making the patient happy, its called profit, no doubt sometimes it may just be lip service....but atleast sometimes it works....alan

Anonymous said...

Generally,patient advocates will
work for the patient up to a point
and keep in mind they have no priviledged status. I've seen them
ask around for jewelry that a patient lost 2 weeks ago.
Patients that are having surgery are told time and time again to
leave their jewelry at HOME! Don't
expect patient advocates to intervene in any kind of care plans. The role of patient advocate
was not meant for that and as such
are more involved in patient services.

PT

Joel Sherman said...

PT,
What you are describing is a hospital employed patient advocate. There are patient advocates that you can hire privately or even a few that volunteer their services. Some may in fact be very knowledgeable and may be able to intercede with providers to explain your medical needs to them and even to modify your care. Google patient advocate to familiarize yourself with the wide variety of patient advocates available. They can be very helpful for patients who are unable to negotiate the system themselves or who may be unresponsive for an extended period.

Anonymous said...

Thanks Joel

I really didn't think such
advocates were readily available
to patients aside from the hospital based advocate. Perhaps
someone who is familiar with them
could shed some light on this
subject.

PT

swf said...

Just FYI
I was told I could certify in basic advocacy and then specialize in a specific area (insurance, patient rights, EOL, cancer, children, or those who have no family or friend to advocate.)
Yes: also I was told hospital positions are not always in the best interest of the patient, but these were counselers trying to get you to make a business out of it. (Fairly new apparently) I really wanted to just certify and then volunteer, but I guess I will find out the legal differences soon.

artstump said...

High School Students In Hospitals

How did Yogi put it, Déjà vu all over again? It seems the Shadow Job Program is alive and well. We have another innocuous program from a hospital’s HR department that assures patient privacy protection and invites students to do “…rotations over the course of the semester while wearing white lab coats on loan to them from the hospital.” The article in the demopolistimes.com can be found here:

http://www.demopolistimes.com/news/2009/aug/18/students-can-look-careers-medicine/

art stump

MER said...

From the article Art refers to:

“With the rotations, we still make sure to protect the privacy and confidentiality of the patients,” Smith said. “The patient privacy laws do allow for student observations with the patient’s permission, and our patients have always been very gracious and supportive. They realize that these students are the future of health care.”

Lofty ideals. Nice words. But the question is, how specifically do they protect the privacy and confidentiality of the patients? How specificically do they get patient permission? Is all this related up front while the patient is dressed and in a doctor's office -- or do they wait until the patient is naked in a gown on the table? Would anyone want to bet whether they have specific written rules that guaranteed patient protection and no ambush? I would bet they didn't.

"our patients have always been very gracious and supportive."

Well, of course. Would they say otherwise? Are they assuming this? Do they have quanatative evidence that their patients are okay with this? Exit interviews?

You know what? We'll probably never find out the answers to any of these questions because of the secret nature of hospital cultures. But maybe we can get documents in this case since the hospital has entered into the public arena through a school system. All this may be considered public records.

Anyone want to contact this hospital to learn the details?

artstump said...

A suggestion…

There has been a lot of discussion on this blog about how to actually make a difference. Here we have a hospital program, however well-intentioned, that seeks to attract future hospital employees by exposing high-school students to the inner workings of hospital healthcare, including the lives of its patients and their medical circumstances. Although the claim is made that these patients graciously forego their right to privacy, MER raises familiar questions about how those permissions were obtained.

The subtlest pressures come into play in situations like these when a caregiving authority asks concessions of its patients. I think I’d feel a lot more confident about the reliability of patient responses if the students were at least dressed like teenagers and not decked out in white lab coats.

Once they don the lab coat, the official garb of healthcare and medicine, they become part of the machinery that the patient is beholden to. When they come face-to-face with the patient, they are literally wearing the endorsement of the caregiving facility that the patient has become dependent upon. At that point they present an even greater obstacle for any such patient who would rather not be put on display. There’s an insidious potential in programs like this one – the potential for tacit coercion.

My suggestion is that since we have a link to the particulars of a hospital program and have unanswered questions about the program’s safety and appropriateness, we should all put those questions to the reporter of the demopolistimes.com and/or directly to the hospital’s management. Or is there a reason why we should take it for granted that healthcare institutions are noble and right in all that they do.

art stump

Anonymous said...

I've obtained consent forms from
several hospitals in my area. Each
form would be suitable for anything
from a biopsy to surgery. In the middle of each form is a section
on students. To exclude students
from observing one must sign whether you grant permission and
sign giving consent for the procedure.
My experience has been that when obtaining consent for whatever
procedure the patient is recieving
I've never heard anyone talk to
the patients about observations.
Fact is I'll bet most nurses,
technologists and physicians are
most likely unaware of that little paragraph in the middle of that page that pertains to students observing. Sadly, everyone is rushed just to get the paperwork
ready for the procedure.

PT

swf said...

Maybe we should all also contact our local teaching hospitals and say that we want to 'shadow' the 'shadowing program'. As concerned parents, nieghbors,and citizens we want to see what our kids are really being exposed to within these scenarios.
Wonder if that's legal.
Would you guys mind if I slapped on someone's lab coat and stood in on an intimate proceedure? How about if my intentions are well meant? What if my 15 year old daughter might just possibly become a nurse/doctor one day and wants to be a part of this program and I want to see what she is being subjected to?
I was 15 in the 11th grade: is that an appropriate age to shadow a nursing program?
Seriously, I doubt this would happen...but where does entitlement end??

Anonymous said...

Interesting conversation, I have had two experiences with this. I was in for my combination DOT/annual physical, as we approached the door of the exam room the nurse looks at me and says the Dr. has a student who is studying to be a NP shadowing and wants to know if it would be alright if she observed. I told her, she can but she has to leave for the prostate and hernia exam...she looked at me kind of sheepishly and said, I had to ask,...and I don't blame you.

A few months back I developed a sore inside my nose that wouldn't heal so I got an appointment with a ear, nose, & throat specialist. They sent the pre-registration papers since I was a new patient, in the body of the consent form it said something to the extent that as part of their program they have high school students shadowing and partcipating in treatment. I e-mailed the hospital and told them I wanted details on this program including could I refuse, could I place restrictions, etc. I wasn't worried about them looking in my nose, but I had previously read Art's book and had decided I wasn't going to just accept it regardless. They replied very nicely that they always ask before and I could refuse or just strike that line and make a note and they would grant my wishes. I told them I appreciated that, but they should state that on the form because it didn't read like their was a choice....got no response to that.

On an interesting side note, I was looking at the new search engine bing and did one on patient modesty ...there was an add on disposable surgery shorts and tops. The interesting comment was these disposable garments are like the scrubs doctors and nurses wear making the patient feel more included and one of the team rather than isolated....wow not that is a concept...bridging the us and them....but then, that thought came from outside the true medical community...alan

MER said...

Interesting last comment about scrubs, alan. It's no accident that there's a popular TV comedy called scrubs.
All uniforms in all professions have interesting symbolic meanings. But scrubs and particularly symbolic, especially. There're not necessarily associated with doctors, who wear them in surgery mostly. But they have become the symbol for And you can't tell anyone apart. You don't know who's who.
What do scrubs symbolize?
-- Access. With scrubs you can get almost anywhere in a hospital. We've talked about that problem.
-- "Professionalism." You can have 3 months of medical training, get into a set of scrubs, and be considered a professional. Indeed, you can have no medical training and do the same. EXPERIMENT: Get into a pair of scrubs and see how far you can get in a hospital without even wearing an ID. You'd be surprised.
-- Status, especially for those lowest on in the hospital hierarchy. Wearing scrubs gives them access to all of the above, which includes:
-- Power and Control -- A patient is more likely to obey a command or request from someone in scrubs (especially a woman). Men, in or out of scrubs, are often taken to be doctors.
Any other ideas as to the symbolic nature of scrubs?

MER said...

Check out this study telling what kind of attire patients prefer for their doctors:
http://linkinghub.elsevier.com/retrieve/pii/S0002937804001656

This is all connected to this thread, especially due to the access issue. Although it Art's case, the student seemed to be wearing regular attire. But a recent post tells of a shadowing program where the students will wear white -- white especially is associated with doctors, but now everyone wears white in one way or another.
Note that this article says that a white coat over scrubs is the most professionally perceived attire.

artstump said...

To MER from August 21…

In fact the outsider’s uniform in the Radiation Oncology Center was the smock. In chapter 13, from my account of the incident:

"…I was lying on my back on the treatment table and looking over at her. She was standing just a few feet away dressed in an effacing pastel smock — an effective ploy. She had been present when I entered the treatment room, and she had watched me undress."

And later in chapter 42:

"As we neared the treatment suite, I noticed a new face standing outside in the control alcove, a young girl dressed in a light-colored smock. It was a feint I’d seen before, a would-be recruit trying to look like staff. My reaction was an immediate flashback to November 13."

One of the reasons for dressing an outsider in a smock/scrubs getup, it seems to me, is to allow the trainee/student to play doctor for the day. That’s understandably an attractive inducement for the program. One of the other reasons, however, is to subtly manipulate and coerce the patient. As was pointed out above, a set of scrubs can magically unlock doors of every kind, including those that would normally safeguard patient privacy.

art stump

swf said...

Which makes me wonder Mr. Stump: How were you ever able to trust facilities again? The faith we put in our chosen Dr. is different: It usually grows with time and the belief that they have earned it lays the foundation of trust.
However: step outside this one-on-one relationship and we are vulnerable to all of the coercion, deception, and manipulation you spoke of above. The planned secret manuvers...the blatant 'tricks' that demean people and foster resentment. Besides the people who felt it was their right to use such horrible tactics to undermine your humanity, I wonder what it taught the girl who bought into the scheme. Did she leave feeling that patients were pawns: tools to learn the art of manipulation and deception? Perhaps 'the end justifies the means' mentality? I would hope instead she re-evaluated her own moral and ethical capabilities.

Anonymous said...

I think if one thing we pick up one thing from these threads...its that we can't trust providers to look after US on this issue. We have to look out for ourselves, stand up for ourselves because as swf points out...we can't count on them to look out for us...

SWF great point. if this is how we start the indocrination to medicine...patient modesty isn't important, the focus is on the provider...not the patient. If this is how we start, simply disregarding the modesty of a patient to see if a HS girl is interested in nursing...its no wonder it ends up being modesty is what the provider does...not what the patient wants......alan

MER said...

Part 1

The experience Art went through with that shadow has bothered me considerably. I've tried to figure out what was going on in Denise's mind. She was the tech who brought the high school girl into watch. I've struggled to figure out how these kinds of things happen. It goes to the age-old question -- Why do good people sometimes commit evil acts?
Denise isn't the problem The hospital culture that created the atmosphere in which she thought what she was doing was just fine -- that's the problem. Now, we can't just let Denise off the hook, though.
One particular book has helped answer this question for me -- "The Lucifer Effect: Understanding How Good People Turn Evil" by Philip Zimbardo.
Now -- before I provide you with two quotes -- I want to make it clear that I'm not equating what happened to Art with genocide or mass killings or rapes. Modesty violations do not descend to that level, of course. But I believe some of the same principles that apply to the worst of crimes can also be applied to what we're talking about.
Zimbardo defines evil thus: "Evil consists in intelntionally behaving in ways that harm, abuse, demean, dehumanize, or destroy innocent others -- or using one's authority and systemic power to encourage or permit others to do so on your behalf."
The key phrase there is "systemic power." Zimbardo believes that in our culture we don't grant enough credit to the power that settings, situations, and especially systems have over us as human beings. He's not saying that people shouldn't be held accountable. But he believes most of us don't really know who we are or how we would behave in unfamiliar settings and situations controlled by powerful systems.

MER said...

Part 2

Consider this quote from Zimbardo's book in terms of what happened to Art:
"Aberrant, illegal, or immoral behavior by individuals in service professions such as policemen, correction officers, and soldiers [I would include medical professionals as well], is typically labeled the misdeeds of 'a few bad apples.' The implication is that they are a rare exception and must be on one side of the impermeable line between evil and good, with the majority of the good apples set on the other side. But who is making the distinction? Usually it is the guardians of the system, who want to isolate the problem in order to deflect attention and blame away from those at the top who may be responsible for creating untenable working conditions or for a lack of oversight or supervision. Again the bad apple-dispositional view ignores the apple barrel and its potentially corrupting situational impact on those within it. A system analysis focuses on the barrel makers, on those with the power to design the barrel." p. 10
Denise isn't the problem. The hospital culture that gave her the idea that what she was doing was perfectly okay -- that's the problem. Of course, we can't just let Denise off the hook. She represents what Hanna Arandt would call the "banility of evil," that is, people who are thoughtless. People who don't think for themselves. People who get wrapped up by the setting, the situation and the powerful systems around them that set the moral tone. These other factors have much more influence on us than we care to admit
Zimbardo's book studies the most horrible acts that human beings do to each other and tries to understand why. I'm not equating these acts with Art's situation. But I do believe there are significant and relevant parallels.
Within the hospital culture, the patient can easily become the "other." The patient is sick, uncomfortable, dying, vulnerable, naked,and powerless. The caregivers are not all of those things.
I know some doctors and nurses shudder at my suggestion that the hospital culture can even be compared to these other horrors. But I stand by my suggestion. It's no accident that nakedness and humiliation are tools, conscious strategies used in warfare, genocide and prison situations -- and that we're talking about bodily modesty and humiliation and sometimes thoughtless behavior within hospital settings.
Medical caregivers have tremendous responsibility because of the trust society has placed in them. They are dealing with people at their most vulnerable.
Zimbardo's book is not the most pleasant read. It's a frightening story, but well worth looking into.

Charles said...

MER, I think the answer is POWER and protection...I think those two things skew someone's concept of right and wrong and appropriateness.
My teenage niece was asked by our long-time family doctor to undress so he could check "her cervix for cancer".
She knew immediately what he was suggesting was wrong.
She's a virgin and virgins are NOT offered cervical screening in this country.
Also, it's up to the woman whether she has cancer screening...pressure is unacceptable.
The doctor knew all of that...so rather than try to justify a smear in someone so young and a virgin...he tried to use the cancer scare to take advantage...no smear, but he wanted to "view her cervix to confirm it looked healthy".
I'm sure he did!
Why did he behave this way?
Faced with a beautiful young woman...he's a doctor and in a position of power. He knew he could take advantage and get away with it.
He knows many of his patients will simply do as they're told and if not, if he becomes authoritative, most will comply...especially very young patients. The vase majority won't complain...they'll just accept his word that it's necessary or a good idea.
Perhaps, it's a tried and true method that has reaped benefits in the past.
The power imbalance certainly helps..
In the unlikely event he receives a call from the Medical Board...he can hide behind his concern for cancer...perhaps, he'd say he didn't believe she was a virgin (so what?...still up to her) or she feared the actual exam so he thought the visual would suffice...
I'm sure he's rehearesed his responses.
You can see how many doctors (and medical people) have worked out how to use their position to maximum advantage.
I went to see this doctor (along with my brother)and told him he's a disgusting excuse for a doctor and we were on our way to the Police.
He was clearly shaken by the encounter and offered no explanation.
It's not easy to take these things further...nothing actually happened because my niece refused, her history does not mention his suggestions...so it's her word against his....
He claims she must have misunderstood something...
My niece understood perfectly..she's an honours student and off to University next year to study Law.
We've all changed our doctor now - he used to care for the whole family.
It has opened our eyes...the women in our families now see a female doctor.
Once you see doctors as men and women...gender becomes a HUGE issue.
Many of us don't even think about gender until something improper or inappropriate happens...and we're reminded this is indeed a man (or a woman)
I'm sure this would extend to other medical situations...being careless with the patient's privacy, maximum and unnecessary exposure...
I'm sure some of it is calculated, others are being cruel and insensitive and enjoying the power, others are taking advantage...
I think women need to be very careful...this cancer screening has given suspect doctors a huge opportunity to take advantage...any visit can mean pressure to have very personal exams.
Never allow a doctor to pressure you into anything...
Gender is an issue in medicine - a huge issue...because they have access, opportunity, power and protection.
I should mention my niece was seeing the doctor for a painful wrist after a fall playing netball.

MER said...

Thanks for your response, Charles. I think the connection between your story and what I wrote involves why the doctor thought he could get away with behavior like that. Is he a "bad apple," or does the culture of his workplace support his behavior? How does the medical profession, ethics boards, licensing boards, react to complaints like that? What would the hospital admin do if you had complained to them? In other words, how does the medical culture react and deal with issues like this?
The contention of the book I quoted is that too often the systems allow such behavior even if they don't condone it. They allow it through the various actions listed in the quote.

Joel Sherman said...

Anyone interested in Charles' post should read the women's privacy thread which has numerous complaints about how women are forced into pelvic exams.
None of the lady posters on that thread though even mentioned the gender of the physician. I can't judge what the motives of the physician Charles mentioned were.

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