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Tuesday, August 25, 2009

Cancer Therapy & Privacy Angels Part 2

Continued from Part 1. Part 2 is now full as well. Please continue on Part 3.

200 comments:

Joel Sherman said...

artstump has left a new comment on your post "Cancer Rx & privacy: My Angels Are Come":

To swf from August 21…

You ask in your post how it is that I can trust facilities. I’m not sure that I can. And I’m not sure that I ever did. For me it’s never been about placing trust in facilities or institutions, but in people.

A recurring theme in My Angels Are Come is my natural distrust or caution about most everything. It’s part of what I am. However, my diagnosis of cancer changed a lot about how that predisposition works with me. I learned that while most challenges in life allow a certain amount of distance in how one handles them, the onset of a life-threatening health condition comes with its own set of rules. You do your homework, and then you chose your therapy path, and then you place yourself in the hands of others. You surrender yourself to the highly specialized caregivers who can make that therapy happen.

For me, as diagnosis transitioned into therapy I suddenly took all of that guarded trust that I’d held so closely for so long and placed it in a group of strangers that I had only just met – something unheard of for me. But the fact was, they were the only chance that I had. I needed desperately to believe in them and in their expertise, and I needed to dare to hope that they could heal me. But before I could do any of that I needed to believe that were people worthy of my trust. And to my amazement that was something I just up and did unconditionally.

I think that’s why later, when the hospital’s Shadow Job Program did a number on me, it struck me as something much worse than abuse; it struck me as a betrayal of trust. I examine that reaction pretty thoroughly in the book and in the end I decide that my feeling of devastating betrayal was not in fact a blot on my caregivers’ behavior, but on that of the institution behind them.

You point out, and I think rightly so, that the relationship with one’s doctor is different because it is built over time. During my radiation therapy for prostate cancer I had daily intimate contact with radiation nurses and radiation therapists for weeks on end. Their kindness and thoughtfulness were demonstrated repeatedly at a time when I was totally at their mercy. And they were magnificent. To this day I feel that my greatest blessing was being referred to the extraordinary group of caregivers at Memorial’s Radiation Oncology Center. Bonding with them was a profoundly moving experience for me, one that pushed the significance of the hospital's misconduct far into the background.

As I watch the hospital continue its expansion and growth in the South Bend community, I’m reminded of Jim Collins’ new book, How The Mighty Fall, in which he identifies five distinct stages of corporate decline and failure. Stage one is “hubris born of success;” stage two is “undisciplined pursuit of more.” I have to wonder if I am witnessing the early stages of the hospital’s demise.

art stump

Joel Sherman said...

MER has left a new comment on your post "Cancer Rx & privacy: My Angels Are Come":

I want to continue my discussion as to why things like what happened to Asrei Beyewitz as described in his story on Dr. Beernstein's volume 22 blog, happen; and what happened to Art Stump as described in his book My Angels Are Come. And why modesty violations may happen in hospitals and clinics.

Modesty violations like these sometimes happen because of the "deindividuation" process that happens in institutional settings such as hospitals. Deindividuation involves the hiding of one's identity. We can do that by donning a uniform, wearing a mask, not wearing name tags, etc. But once we become anonymous and people we're acting on don't know who we are and we know they can't identify us or we them, bad things can happen

As Philip Zimbardo writes in his book The Lucifer Effect: "I had conducted research showing that research participants who were 'deindividuated' more readily inflicted pain on others than did those who felt more individuated." (p.24)

He also writes: "...conditions that make us feel anonymous, when we think that others do not know us or care to, can foster antisocial, self-interested behaviors." p. 25). This may explain the “self-interest” we see in hospital policy, why they sometimes focus inward and make things easier for themselves.

So -- how does this apply to hospitals and modesty issues.

First of all scrubs or uniforms. Who's who? They're all dressed the same, so who can tell them apart. Scrubs represent access and professionalism. Secondly, name tags with specific names and titles. How often do we not see them. Thirdly, introductions. How often are we not introduced to those who will be "working" on us, especially intimately.

Fourthly, operating rooms. Read text books about prepping for operations. When it comes to intimate prepping (testicles, scrotums, genitals in general), you'll often read that the shaving or prep should be done "in theater" to prevent "unnecessary embarrassment." Unnecessary embarrassment for whom? The patient or the staff -- or both? It's the old maxim: What you don't know can't hurt you. Now, some patients prefer this to be anonymous. We're all different.

Joel Sherman said...

MER's post, Part 2

Under privacy laws, patients have the right to be introduced to and know those who will be working on them. How often does this happen, especially “in theater?”

When it comes to intimate procedures, some medical professionals want to remain anonymous. They don't want to get to know the patient. They don't want to be introduced. They purposely distance themselves for their own psychological safety. As Zimbardo writes: "Any setting that cloaks people in anonymity reduces their sense of personal accountability and civic responsibility for their actions. We see this in may institutional settings..." p. 25 Frankly, as I said above, some patients prefer this strategy. Others don't.

Any solutions? If you're the kind of person who wants to know things, and if you're in for an operation or procedure, insist, demand that you be introduced to everyone who will be in that operating room with you -- everyone. No one who hasn't been introduced to you beforehand is allowed in. Period. Make that clear. Ideally, you'll meet these people before you enter the OR, but that may not be possible. You should at least be introduced in the OR.

Don't let the operating staff deindivuadize themselves. Don't let them remain anonymous. Learn their names, first and last. Let them know your name, first and last. That connects them to you. You're a person. You know who they are. They know who you are. No games. Some may not like this because they prefer to remain anonymous. It makes them feel more comfortable. Explain that being introduced to them makes you feel more comfortable, and that patient comfort should be high on their agenda.
We've talked about the power dynamic -- how patients are at a disadvantage medical settings. Consider this: Zimbardo writes: "Anonymity plus authority is a recipe for disaster." p. 493

artstump said...

To MER from August 25...

Interesting Operating Room tactic of preemptively penetrating the personal space of those about to penetrate your personal space.

You mention that "Under privacy laws, patients have the right to be introduced to and know those who will be working on them."

I'm not familiar with the particulars of such laws. Could you be more specific about them: state, federal, etc?

art stump

Joel Sherman said...

Responding to several comments on Part 1, I wanted to add that scrubs are used for multiple reasons. Disguising people’s identity shouldn't be one of them. But scrubs are used by hospitals to help maintain a clean environment relatively free of outside contamination. When patient areas are potentially contaminated by fluids or infection, scrubs provide a covering that's easy to wash, clean and reuse. So don't assume that anytime you see someone in scrubs they are trying to hide their identity. That's the least likely explanation.

Joel Sherman said...

From Art to MER:

You mention that "Under privacy laws, patients have the right to be introduced to and know those who will be working on them."

I'm not familiar with the particulars of such laws. Could you be more specific about them: state, federal, etc?


I never heard of that either MER.

MER said...

Art:

From the book: "Legal and ethical issues for healthcare professionals" by George D Pozgar from Chapter 14:
"Patient Rights and Responsibilities. Page 346

"Right to know the caregivers: Patients should know who is treating them by name, discipline,and role and responsibility in their care plan. Patients should know the names of all consulting physicians and hospital designated caregivers. Caregivers should identify themselves to patients by name, discipline, specialty, and identity badge of the treatment team."

Following those sentences is a patients right sensitive and compassionate care: "Patients have a right to be free from harassment, including verbal and physical abuse. They should receive considerate and respectful care given from competent caregivers who respect the patients' personal belief system."

You can find this and much more at:
http://books.google.com/books?id=baXHoB13nXsC&pg=PA346&lpg=PA346&dq=patients+right+to+know+caregivers&source=bl&ots=29qQOJirZ1&sig=nYnLK8t66oFlpm3iT5pRyLW2KJ0&hl=en&ei=5NGVStiYKZOqswOYv9GjDA&sa=X&oi=book_result&ct=result&resnum=1#v=onepage&q=patients%20right%20to%20know%20caregivers&f=false

Joel Sherman said...

MER, thanks for your reference.
But I think it's fair to conclude that what you're reading is a statement of principles, not a binding law or right. It's on the same level as a hospital promising only the best care. It's probably not legally binding on anyone, but if stated in his hospital's brochure for instance, it could help Art's case.

MER said...

I agree, Joel. This may not be law but I would also suspect that there isn't a whole lot of case law clarifying some of these principles. Do we need to go to court to establish the legal validity of these principles?
Here's another interesting quote from the book "Nursing and the Law" by Keith M. Trandel-Korenchuk, Ann Marie Rhodes:

It's referring to the patient's right to refuse care: "A competent patient's refusal must be honored whether the refusal is grounded on a doubt that the contemplated procedure will be successful, a concern about the probable or possible results of the procedure, a lack of confidence in the surgeon who recommends it, a religious belief, or a mere whim."

Now, refusing a caregiver because of gender could be for religious grounds or it could be for modesty, which probably would come under the "whim" of that statement. And refusing a caregiver's gender isn't necessarily refusing care. If the patient is clear that he wants the care but from same gender, the caregiver cannot in good faith chart that the patient refuses care.

These are from two textbooks advising medical professional about legal situations. The principles seem pretty clear to me, even though they may not have been tested in court.
You'll find the above quote at:
http://books.google.com/books?id=fSvI8w1uFSkC&printsec=frontcover&dq=patients+right+to+know+caregivers&source=gbs_similarbooks_r&cad=2#v=onepage&q=&f=false

Joel Sherman said...

No doubt about that MER as an established law nearly everywhere, I believe.
A competent patient can refuse any therapy even if lifesaving.

MER said...

One of the points I was trying to make, Joel, is that refusing the gender of the caregiver isn't equal to refusing treatment. Yet, I think, perhaps, that some caregivers may interpret it as such, and even chart it that way. So - perhaps patients who request same gender care and are told "no" or there's none available -- need to make it clear that they're not refusing treatment. Again, I'm not talking about life-saving situations in the ER.

Anonymous said...

I agree Mer and a more tactful way
is simply to say " The caregiver
makes me feel uncomfortable,I'd
like to be assigned another caregiver. Do you have a male provider and that you want to set
a tone in such a way that dosen't lean in any one direction as to why
you'd like a male caregiver. Leave
that up to their imagination,you
really don't need to give an
explanation.
You are not in that respect
refusing care but rather just
asking to be comfortable. Those
are rather powerful words coming
from a patient that no one could
argue with.


PT

artstump said...

To MER and Joel from August 26-27…

Joel said, A competent patient can refuse any therapy even if lifesaving.

No doubt there is well-established case law as to the circumstantial definition of “competent.” But it seems to me that simply not being treated is not anybody’s goal. After all, you can always just get up and walk out, unless of course you cannot just get up and walk out. In that case you might run the risk of being adjudged “incompetent.”

The rub, it seems to me, is that just because you have the right to refuse gender-indifferent healthcare doesn’t mean that a hospital has the obligation to staff its facilities to comply with your preferences. On the other hand, there must be huge amounts of case law addressing healthcare facilities’ obligations to respond to patient needs and preferences, be they language, religion, race, gender, etc., not to mention the various combinations of circumstances in which distinctions of that sort might legitimately be applied.

In a related vein, every surgery that I have had has been preceded with a parade of principals coming into the prep room to introduce themselves and tell me what they are about. When I had hip replacement surgery, I had mentioned to my surgeon beforehand that I wanted no students involved with my anesthesiology. He quickly begged off, suggesting that I would have to talk to the anesthesiologist about that. He must have passed along my concerns, however, because just before surgery the anesthesiologist came into my prep room to introduce himself personally and to sternly assure me that he had no students on any of his teams. We parted friends, but what he had essentially told me was that he might very well be working multiple theaters simultaneously while overseeing his teams. Of course, I would be unconscious throughout and would have no way of knowing anything about what went on other than the fact that I awoke with a beautiful new hip.

My point here is that all of the pre-op communications with the various players were courteous and reassuring, but they were not legally mandated. Indeed when I finally walked into the OR there were a number of people scrubbed and masked and awaiting my arrival. I recognized none of them of course.

The first and only one to approach me was a tall blond with beautiful eyes who extended her hand and introduced herself as doctor something or other; she would be doing such and such. The pre-op sedative was settling in about then, and I could feel a gentle déjà vu from the VMS procedure that I’d had during my radiation therapy (chapter 18, My Angels Are Come). Back then I was similarly sedated and found that “There were suddenly many guiding hands and cajoling voices helping me onto the table….”

There are priorities that each of us carries around through life, and they shift about in importance as we encounter the demands of new and different circumstances. As I lay back on the operating table for my hip surgery, I was aware that I was about to have my leg cut off and put back together around a large piece of metal. I remember that I was terribly cold and that the flimsy gown I was wearing covered almost nothing. I remember too that I didn’t particularly care about any of that. Whoever the people were behind the masks, they were now my people. I’d put myself in their hands and I wanted them to be as comfortable with me as possible. My top priority for that final fading moment – as I floated off to sleep – was that I wanted them to do a good job.

art stump

Hexanchus said...

Art,

This whole issue comes under the umbrella of informed consent. When a patient refuses a provider, they are refusing to consent to allow that person to treat them - it doesn't mean they are refusing treatment.

A patient has the absolute refuse any provider for any reason. If the provider then tries to force care upon the patient, they are committing a criminal act (assault and/or battery depending on the laws of the specific act) and can be arrested and prosecuted criminally, as well as have a civil action brought against them for violation of their rights under the 1st, 4th, 5th, 9th and 14th amendments. There is lots of case law to support this.

With respect to competence or capacity, by law a patient is assumed competent and having the capacity to make their own decisions until proven otherwise. The burden of proof is on the person challenging their capacity, not the patient. Additionally, competency isn't an all or nothing thing. Even a person that may not be competent in some areas may still have the capacity to make medical decisions - all that is required is that they be able to demonstrate that they understand the potential risks of their decision. Further, their specific decision may not be used to challenge their capacity - again supported by case law.

When a patient refuses a provider, regardless of their reason, the facility has three options: attempt to accommodate the patient's wishes, discharge the patient if their condition permits, or transfer them to another facility if it doesn't. Of course the patient always has the option to leave AMA as well.

Joel Sherman said...

I believe Hexanchus' post is correct in all essentials. The legal definition of competence is what is meant here, and it is well defined in each state.

MER said...

This to me seems to be the crux of the issue. Our health care system is broken, as part of other systems in our society that are broken.
I don't think we should underestimate the power of setting, situations, broken, corrupt systems -- and how easily human beings get into role playing. We all play roles in society, and if we really watch ourselves, we can observe ourselves switching into these roles. This switch may involve a change in our clothes, our stance, or voice, our tone, or a setting and place.
Doctors and nurses get into a role-playing mode, too. That is, there are certain societal expectations associated with these roles and they learn them. But we forget, "patient" is role as well.
When we get into a doctor's office or a hospital we play the role of patient. We learn this, I think, mostly from the media and from stories we hear or read, or from past experience. The system guides us to some extent in this role, often not outright telling us what we're supposed to do but suggesting,implying it -- or forcing it. Most people just go along with the role -- because, in the right setting, in the right situation, with a power system -- most people comply with authority. Some people don't accept that. That would never happen to me, they say. I'd never do that, they say. People who say that, who deny the power of settings, situations and systems, are most likely the fastest compliers under stress.
Look at the recent kidnapping in California, the 11-year-old girl, now 29. Look how that kind of extreme setting and situation and authority can brainwash someone. That's an extreme situation, but don't think that couldn't happen to most of us -- the Stockholm Syndrome.
So -- what am I saying? Why do doctors and nurses assume what they assume? They believe those assumptions are part of the role they are playing. Why do most patients just comply -- they assume that's part of what it means to be a patient. Keep in mind that this role playing isn't all bad. Most of it is good and necessary for any society or system to work.
How do we break away from the bad aspects of this model? It won't be easy. But it starts with individual people -- doctors, nurses and patients -- first, being willing to recognize what's happening and what's wrong; secondly, being willing to start changing and accepting the risks involved.
As a side note, I just talked with a nurse who was extremely frustrated with how hospital admin was forcing her to spend less time with patients thus not being able to form any kind of professional relationship. We talked about the modesty issue. That frustrated her, too. She wanted to do what was best for the patient but the "system" didn't allow it -- through staffing problems and lack of time.
Now, I'm not excusing this nurse. We all have to make individual decisions. At the same time, when you find yourself within a faulty, broken system that doesn't allow you to do what you think is ethical, when you have to work to bring home the bacon to keep a roof over your head and food on the table, etc., it takes a certain kind of courage to break away or force change from within. You may become a martyr.
I'm not making excuses for people. I'm just saying that most all of are very reluctant to challenge a powerful system when the safety and welfare of ourselves and our families are at stake. Does that make it right? No. But that's just the reality of life as I see it -- why quite often good people do bad things.
Want an extreme example? Watch the documentary "Shoah" or read the book which contains the entire transcript of the program. You'll observe the frightening process of how everyday, ordinary, some educated, caring people comply or ignore or rationalize their involvement with the Nazi Holocaust. Don't think that you couldn't become part of an evil system. We all could.

Anonymous said...

Just about everyone in healthcare
wants to blame administration for
all their woes. At many facilities
questions are always asked at
employee forums,"Do you have the
tools to do your job?" Most answer
yes to this question.
To me its just more deceit when in
actuality patients can be accomodated in facilities but the
blame is displaced and excuses are
made. If it is a staffing issue
then who's fault is that? Look toward HR and see who works there.


PT

MER said...

PT -- The health care "system" has become essentially money-driven. It wasn't always like that. Although money has always been a part of medicine, it's only in modern times that the system has turned into huge corporations.
Having said that, I'm not excusing people who work within the system. They have consciences, they know the difference between right and wrong, they know their codes of ethics. I've even included the patients. We all share blame in this and it will take that kind of acknowledgement for any real change to take place.

Peter H said...

I don't wish to be offensive...but the Nazi regime stripped people naked before sending them into the gas chambers.
I was reading about this a few years ago and one of the major reasons for this treatment...people are much less likely to resist and fight back when they're naked...
It is an effective way of neutralizing and disempowering people. People become disconnected from their environment to cope with the exposure and vulnerability.
I wonder whether the medical profession have worked that out as well.

My FIL was standing naked during a skin check when another nurse walked in without knocking to collect a file from the nurse in attendance.
The door was left ajar for a minute or so...
MY FIL did not complain and only mentioned it recently (it happened 3 years ago now) he said he felt like nothing.
He had never been made to feel so insignificant in his life.
He hasn't had a skin check since and doubt he ever will...
We let these people get away with treating us so badly...they're authority figures and we're compromised...especially when we're undressed.
In any other setting, this conduct would be considered unacceptable, rude and unprofessional...even criminal.

MER said...

I understand what you're saying, Peter H.

I also realize that some medical professionals reading this thread are upset that I'm using extreme examples like the Holocaust and war crimes. I do this not because I disrespect the medical profession, but rather because I am in awe of the great responsibility they have.

We are all only human. Doctors and nurses and only human. But because of their great responsibility, when they go bad the horrible results rises to the level of their special status in our culture.

In his book, "Oath Betrayed: Torture, Medical Complicity, and the War on Terror," Steven H. Miles (professor of medicine and bioethics)writes, referring to Abu Ghraib and Gitmo:

"Medics and nurses often were guilty of not helping victims in distress, of observing brutality and looking the other way, and worse. They signed off on false death certificates and lied about the nature of wounds and broken limbs. They violated their Hippocratic oath and 'sold their souls for dross.'"

As our health care system becomes bigger and bigger and more money-driven, and run by CEO's who are not doctors -- those medical professionals working within this system must become vocal and take a stand for patient dignity where it isn't respected.
Because they're dealing with bodies with people inside, because they need to get people naked to serve them, doctors and nurses must never forget how nakedness has been used historically to demolish human dignity and individuality. It bothers me that, as Dr. Bernstein admits, many if not most doctors don't see medical modesty as an issue, and are not taught much about it.
Doctors, nurses, techs, cna's who read this post and see absolutely no connection between the above quote and what can go on in hospitals, may be in the most danger of getting caught up in systems that put money and what's best for the system ahead of patient modesty/dignity.

artstump said...

To MER and Peter H from September 1…

Very thoughtful comments showing once again the impact that certain professional mindsets can have on patients.

From My Angels Are Come, page 285,
“It’s as though tractability is the presumed natural state of hospital patients, as though nature itself has made them needing, biddable creatures divested of any feelings of consequence, subjects who disrobe on command, don skimpy gowns, and come and go just as they’re told, no questions asked.”

I agree MER that role-playing is a powerful force. We become socialized by internalizing the lessons of role-playing learned from years of interacting with others. You note that most of us are “…very reluctant to challenge a powerful system when the safety and welfare of ourselves and our families are at stake.” And you were referring to the people who work inside the system. How much more difficult it must be for people who are caught in the system, people who are desperately vulnerable because of their need for the resources that only a healthcare system can provide.

There was discussion earlier in this thread about patients needing to express their objections and preferences and how there may be some ways of doing this that are more tactful than others. But this in essence requires that the patient take the initiative and become assertive. My hunch is that most patients capable of playing that role are doing so already. My concern is for those who cannot play that role, those who find their vulnerability debilitating in the worst possible way, leaving them unable to raise a fist or even a finger in objection.

Peter H offers a devastating observation: ”He had never been made to feel so insignificant in his life.” I believe there is enough heartbreak that comes with the trials of sickness in one’s life; there’s no reason for healthcare institutions and the people that populate them to add to the misery of their patients by leaving them with a feeling of insignificance.

What I’m left with, still, is wondering where one starts to address this kind of quiet injustice. And what I would suggest is that one starts at the beginning. What I would like to see, simple as it sounds, is a mandated feedback form that patients of every hospital-clinic-facility would be given upon their discharge. Patients would rate their experience, offer their praise or vent their outrage, and drop it in a mailbox.

This would not be a marketing device that would funnel back to the facilities involved, but a confidential survey that would be returned to a wholly independent party. That party would in turn compile results and feed reports to Members of Congress, news services, universities, etc.

In other words, lets get it out of the closet. We have the Congressional Budget Office to expose the outrageous practices of our trusted lawmakers, so why some sort of comparably independent Office of Healthcare Practices? It would be a start.

art stump

Anonymous said...

Its common sense,I will respect the privacy of my patients as
part of the hippocratic oath
swearing to the ethical practice
of medicine for physicians. Nurses are repeatedly taught this in nursing school and privacy is the gateway to the rest of what will come. To the astute patient lack of respect for privacy is a bad omen for bad care.
There is no excuse and to further
illustrate my point ensuring a
patients privacy requires some effort and thought and that = work!
Many healthcare workers are just
plain lazy and many hate their jobs
and if you don't believe me visit
some of the choice nursing websites as it is an ongoing continual topic and is not new.Bad
attitude means bad care and then there are those who simply don't
care.
Then you have some who are on a
power trip and those are the worst
as eventually they cause a patient
harm. Its fact that many in health
care should not be there. They have
yet to be weeded out as one only
needs to look at the recent rash
of cellphone pics of patients.


PT

MER said...

Art wrote: "What I would like to see, simple as it sounds, is a mandated feedback form that patients of every hospital-clinic-facility would be given upon their discharge."

Excellent advice, Art. But it will be a battle. I tried this with one major hospital chain. Boy, did they backtrack. Fact is, they know the kind of feedback they may get and don't want to hear it. Not only that, they don't want to establish a paper trail of evidence. But I'm still working with them and won't give up.
This is probably a good place to start. If they hedge or say no, then we can ask them to justify their decision. Of course, we're just patients, and most don't feel the need to justify anything to mere patients. But, fortunately, t here are good people in the system who do care and will work with us. We need to find them.

Anonymous said...

Most facilities such as outpatient
diagnostic imaging centers do as
well as some outpatient procedures
at hospitals as well.
I will tell you for a fact that
those that get the worst ratings
hands down are emergency rooms.


PT

Lisa J said...

I have found the discussion interesting, insightful and upsetting.

My father was recently hospitalized for complications with diabetes.
He has serious lesions on his feet that are very painful. (and other issues)
He's just turned 60.
My father was being washed and having his lesions dressed, when the door opened and three people entered the room.
There were two patients in the room and the "visitors" made their way to the bedside of the other patient.
The curtain surrounding my father's bed provided privacy from the door and from the next bed...but NOT from the foot of the next bed....he was clearly visible.

The "visitors" were a junior doctor, nurse and the patient's daughter.
My father was in full view...the Dr and nurse looked at him from time to time as they discussed the case next door.
My father was naked and asked the nurse if the curtain might be closed.
Her response, "I'm almost done and I can assure you that NO ONE is interested in looking at YOU"...

This exchange prompted a few stares from the "visitors"...but no one closed the curtain.
It would have been such a simple thing to do and I would have thought, the decent thing to do..
If she didn't want to stop her dressing and washing, why not ask the Dr or nurse to close the curtain?

I understand that hospitals are short-staffed...but there is NO excuse for this sort of callous disregard for the dignity and privacy of another human being and to speak to someone in that manner.

My father was upset...he told my brother he must have reached an age were he doesn't "count any more"...
He hasn't mentioned the incident to me...it's clearly deeply embarrassing.

The way others treat us has a profound affect on us at any age...and more so, as we age and when we're unwell.
If you take away what matters, what's left?
If you take away a sense of value and worth, what's left?
If a patient leaves a hospital having recovered, it's regarded as a success story...but we're far more than our bodies.
My brother and I feel there is now a dullness about our father.

If you treat the body and damage the soul, that's not a success story...and you may have damaged far more than you fixed.
You may have damaged something that's not easy to fix.

Joel Sherman said...

Peter H said yesterday:
In any other setting, this conduct would be considered unacceptable, rude and unprofessional...even criminal.

No, in this setting that conduct is unacceptable, rude and unprofessional, though I agree, it's not criminal under our laws.

And Lisa J's post describes the same unacceptable conduct. I would encourage both of you, even 3 years later in Peter H's post, to call or write a complaint. If you don't, you are perpetuating this kind of conduct. Peter, tell the doctor why your father in law will not return. Lisa, write to the hospital, CEO and patient advocate, and describe what happened. Give as many details as you can. Most personnel are horrified hearing of this kind of behavior. But everyone needs to hear that it is unacceptable.

artstump said...

To Peter H and Lisa J…

I agree with Joel’s September 2 post entirely, except that I would put all communication in writing if possible. And I would expect that your objection or complaint might require more than a one-time attempt to get someone’s attention. In My Angels Are Come, page 145, I expressed my frame of mind when meeting with the Hospital’s patient representative, whose name was Lisa:

“I confess, I was doubtful about a slam-dunk fix for this situation.

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.

‘What if I feel the letter is not enough?’ I cautioned Lisa.”

Don’t send letters of attack to your list of recipients and don’t scold or revile them with exaggerated claims. Just present the facts of the matter in a letter, as you have here in this blog. There is enough reprehensible conduct in your stories for them to be their own cry of outrage.

What you need is to get your stories in front of someone who cares. And in your list of potential recipients I would be sure to include each member of the institution’s board of directors – if you can find out who they are. If you can obtain a list of directors, address your letter to the CEO and copy your letter to each board member, noting on the CEO’s letter that you’ve done so.

Plan B, should you receive unsatisfactory responses from your initial letters, would be to write your community media centers, whether radio, TV, newspaper, etc., and include copies of your previous attempts to correspond with the problem institution. Both of you have legitimate cases to plead, and you simply need to get those cases in front of people who care. I wholeheartedly encourage your efforts in this, both for yourselves and for those you love.

art stump

Anonymous said...

Lisa

I believe your story and I'm
sure others do as I've seen this
behavior on many occasions. In
1980 while working at a level 1
county hospital back east I saw
2 female nurses inserting a foley cath on a male patient in clear view of a female patient. They didn't bother to pull the curtains and the female patient just continued to observe.
Why didn't I say something? I
was somewhat new to healthcare,
young and yes somewhat dumb.At
this same facility I saw nude
male foldouts from playgirl magazine taped on the walls of
the nurses bathroom in the intensive care unit. Fact is I
saw a lot of disturbing things at
that facility. Over the years
after having my privacy violated
and having been on the recieving end of unprofessional conduct I
woke up.
I'm at the conclusion now that female providers are incapable
of providing privacy to male patients.Its just not in their
agenda for a number of reasons.I
believe that if you allow them to
perform some intimate care on you
that in effect you are saying I
don't care about my privacy,therefore they don't either.
Furthermore I seen this "display"
mentality in that once they have you nude to keep you nude and let
others notice,particularly other
females. I've examples too numerous
to mention regarding this behavior.
Certainly never saw it done with female patients! In conclusion,I'll
mention what the nurse assigned to
your father said" NO ONE is interested in looking at YOU" which
to me says they look when its worth
looking!


PT

Lisa J said...

Dr Sherman & Mr Stump,
Thank you so much for your helpful advice.
At the moment I'm so angry, I just don't trust myself.
I think its best to wait and discuss this matter when I can be calm and rational.
My brother has spoken to my father about making a formal complaint.
My father is concerned that a complaint may have consequences in the future. It's very likely he'll face more hospitalization in the future.
I feel any decent hospital would want to know what happened...that the system failed or a few members of it anyway.
I believe all the medical people in that room failed my father...any one of them could have swiftly sorted out the problem or it could have been prevented in the first place.

Thank you once again, we intend to take it further...just a question of thinking it through...and we don't want to cause our father any additional worry on top of his health problems.
I'm sorry any patient is faced with this sort of issue.

MER said...

Lisa J

People who talk that way, like that nurse did to your father, are bullies -- and they need to be treated as you would any other bully. You need to face them head on.
Demand to speak with their supervisor. Tell them they are acting unprofessionally. Promise them you will report them.
Basically, people like that are either having a bad day and will immediately apologize, or, if they're true bullies, you will seem them shrink into the floor. They will crumble. The real bullies are cowards at heart and usually run from a real fight.
I know this is all hindsight, but we live and learn. Do as Dr. Sherman suggested. Write a letter of complaint to the CEO of the hospital.

Lisa J said...

May I add one more thing to my post.
I think there is a tendency for men to just suffer breaches to their privacy and dignity.
My father made light of the matter to my brother...but it was his way of raising the incident.
My brother could see our father was very upset and was comforted when he didn't make light of or dismiss the incident.
My father tried to cover himself with his hands...but felt even more demeaned..."like a stupid schoolboy with a bright red face". His coping strategy was to "turn off mentally until it was over"...

I wonder if these breaches are less likely to happen to women THESE DAYS...whether we're more comfortable and confident speaking up at the time and/or complaining about these matters.
(perhaps, that's why its less likely to happen in the first place, they don't want the headaches)

Would the medical staff have acted, if a female patient had been exposed to the gaze of others, including another patient's son?

I'm sure many women also foresee or anticipate uncomfortable situations and request female doctors, nurses and other medical personnel. We don't leave things to chance....
For example...I would not have permitted any washing UNTIL the curtain was closed and I was sure my privacy was safe and secure.
(This is in no way a criticism of the patient's who find themselves in a violating situation)

We also expect absolute privacy when we're exposed for bathing, examinations or anything else.

Perhaps, men are ill-prepared for these violations....whereas women are more aware of boundaries, bodily privacy and people taking advantage of them.

I'd love to hear your thoughts.

Hexanchus said...

Lisa J.,

I also urge your father to follow up with a written complaint as others have suggested - and would recommend adding JCAHO and whatever agency in your state is responsible for licensing/regulating hospitals to the cc: list.

In regard to a complaint having consequences in the future, I think it is far more likely they would be positive rather than negative, and conversely similar conduct is far more likely to reoccur if nothing is done. How can we expect them to fix these problems if we don't let them know when they occur? I think we at least need to give them a chance to "step up to the plate" and do the right thing.

Joel Sherman said...

Lisa,
Men do react less to the incidents you describe than women do. You might look at the male modesty thread here.
It is not macho for a guy to have to complain about his modesty or to lodge a complaint that a woman has harassed him. Most men are embarrassed to bring these subjects up. Women may be reluctant to do so too, but it is socially more acceptable.
I also don't think your father needs to worry about the care he'll get if he goes back to the same hospital. It may well be better.
A significant percentage of men are just as modest as women, but whether they are or not, they have just as much expectation to be treated with respect. Both incidents described by you and Peter go well beyond modesty. Both men were left with a feeling of worthlessness as if their presence wasn't even worth acknowledging. That is completely unacceptable.

MER said...

One theme that seems to run through these modesty violations, is patient as object. Now, medicine can talk all it wants about patient dignity, but when "systems" create situations where doctors, nurses and other caregivers don't the time to develop meaningful personal relationships with their patients, these patients tend to feel like objects -- especially the patients who need intimate care.
Furthermore, there seems to have developed a practice now, among some nurses and cna's, that one doesn't even require any kind of relationship to just move in and perform some intimate task. The attitude seems to be that the job needs to be done, and you're the job, and I'm the doer, so let's get on with it.
This attitude is partially system-driven, but also lies within the personality and character of the caregiver. Even within the constraints of limited time, the most professional caregivers can somehow make A personal connection with the patients. The worst, most unprofessional caregivers, don't even see the need to do that.
When the worst happens, the patients feels like an worthless, meaningless object because he/she is being treated like one.

swf said...

Mer....
I'm curious.
In your own experience with interviewing people would you say that:
A. Most people are comfortable with the passive patient 'role' and have no problem with opposite gender care.
B. Are uncomfortable but are not the type of people to fight for change.
C. Do not really want to talk or think about it.
D. Will be more informed and proactive in the future.
Or is there even a 'most patient'
senario?

Anonymous said...

Lisa I think you hit a very important point. Women who have been oppressed and discriminated against for generations have had to get where they are by kicking and screaming, and fighting for their rights. Not only have they developed the skills and mindset for this....society knows very well women will stand up and will cause them a lot of grief if they are mistreated. men deal with these things from a point of power. we haven't had to fight from a point of "weakness" or from a point of less power, percieved or real women have been forced to raise themselves from that perspective for decades. In the patient provider perspective the patient operates from the short side of the power dynamic...again real or percieved, thus we may not be as prepared to deal with it...toss in the fact that our society tells our men that if we are strong we should just suck it up, complaining about something like this is weak....interesting observation lisa........alan

MER said...

To answer your question, swf, I would make an educated guess that the vast majority of people are B and C. I've been surprised and disappointed with some friends who have experienced modesty violations and will not even write a letter. Part of this, I think, is part of how our brain functions. We tend to/want to forget bad experiences, push them behind us and as far back in our memory as possible. And with medical issues, once the drama is over, and the operation or procedure has been successful, our focus tends to be...oh, well, at least I got through it. I do think that some are comfortable passivity and opposite gender care, but I don't think they are the majority. As as I've said in past posts, it's extremely difficult to nail this down because so much of what we're talking about is context driven, and there are many variables to consider. In the right or wrong contexts, I believe, most people could go either way. Even people who feel comfortable with opposite gender care could be turned around quickly given certain contexts. So people could vary among all those choices within the right contexts. But generally I see people as B and C.

swf said...

Just as you, Mer,I used to see mostly B's and C's. But, when provided with a safe and comfortable environment in which to ask questions, people seem more confidant and empowered these days.
That says two things to me. First: I used to believe that I was an extreme minority. Until the blogs (Thanx Dr.'s S & B)I had to assume I was battling alone. I think we have shown that more often than not, people care about these issues in some form.
Second: Change could be closer than we think. People just need help getting there with options and information.
While there are still days I feel as if I am just swimming in circles, I can't give up and give in. This can't be as good as it gets. People deserve repect and dignity. We all simply deserve better.

HO-B said...

Something I simply don't understand...
In many cases of privacy violations, there are multiple people around...any one of them could have helped...
So, it moves away from the bad egg theory and becomes something more...
What happens in a medical setting that changes all the rules of society?
Do they become desensitized...so they don't see what we see?
Do they see what THEY'RE doing and just observe everything else?
Why? Too busy, jaded and tired...not their responsibility or business, burnt out, dislike people...

I know there is a thing called diffusion of responsibility.
If you're being attacked and one person hears your cries for help,(and there is no guarantee others have heard your cries) they are likely to call the police....if it's a crowded building and lots of people couldn't help but hear you, they are less likely to help...assuming someone else has called the Police.
They can safely (justify their inaction) ignore the cries and stay out of it. (based on a famous case in New York many years ago, where a woman was attacked over many hours...all of her neighbours heard the commotion and all assumed someone else had called the Police...no one actually called the Police & other similar cases.)
We studied this phenomenon in psychology at University. (an elective subject....I'm not a psychologist!)
Is it something like that?
When lots of medical people can all look, observe and take no action. Assuming someone else will/has done something...
Or have they become desensitized to the human body?
Maybe they'd react differently if the exposure occurred in a different setting.

It seems to be against human nature.
I offered my long jacket to a woman who'd suffered a wardrobe malfunation at the theatre one night...the zip on her trousers had broken.
I did it without thinking...an automatic response.
Why didn't I just observe and do nothing?

Jackie said...

That is similar to the "gang theory" (I can't recall the exact name)....when you are a member of a group or Club that has power and/or authority...it can bring out the worst or unexpected in people.
In a gang situation, people will observe terrible unfairness, victims being humiliated or assualted without interfering or objecting and may even join in - urged on by their peers or seeking acceptance or feeling empowered by the situation...the "mob mentality"...when things "get out of hand"...some behave in a manner that would normally be unacceptable to them.
I wonder whether some medical people feel empowered and even superior to patients.
I know some of the shocking stories that came out of obstetrics and gynecology years ago, when the profession was totally controlled by males, were very bad.
These men would not have behaved that way outside the hospital/clinic situation or it would have become criminal conduct, but was more or less accepted in the profession at that time.
My great aunt remembers women being slapped on the thigh by a male doctor and told to behave during childbirth. (in the 1950's)
She said several of the doctors behaved in that manner (to varying degrees) toward female patients (including verbal abuse, insults and behaving disrespectfully)...no one said or did anything...it was accepted within the profession.
Nurses didn't challenge doctors at that time.
This conduct would have been an assault outside of that setting. (and WAS an assault in that setting as well...but was accepted by both the medical people and the patient)
My great aunt said there were very few complaints which probably further empowered these men to keep abusing patients.

Anonymous said...

To HO-B

Interesting comment,however most
of the behaviors are of the mob type in healthcare situations. One
person says or does something stupid and everyone follows suit.
Inappropriate cellphone pics
are just one example as this usually involves several people or
more.

PT

MER said...

As to going along with the gang or mob, see my comments above about the book "The Lucifer Effect" and the influence of settings, situations and systems on human behavior. This book is a must read for anyone who has struggled with the question: "Why do good people sometimes do bad things?"

Jackie wrote: "I know some of the shocking stories that came out of obstetrics and gynecology years ago, when the profession was totally controlled by males, were very bad."

The same can be said about nursing today with about 95 percent of nurses being female. These are not bad people, but whenever any profession becomes dominated by one gender, attitudes and behaviors will be affected. I'm sure we can agree that we're not talking about the majority of male doctors and female nurses, but it is interesting the kinds of different perspectives you get when the genders are mixed enough so that one gender doesn't feel intimidated and will speak up.

Jackie said...

MER, I think that gender imbalance becomes a really critical factor when intimate exams are necessary.
The Dr has the power, authority and is a leader in the system, while we're exposed, embarrassed and perhaps, in an undignified and vulnerable position.

I had never even thought of nurses as a threat.
I suppose because you don't hear of nurses being struck off for sexual misconduct...or I haven't heard of any cases anyway...
Of course, it goes deeper than that...
I just feel some exams, tests and other things (assistance showering after surgery) are more tolerable with same sex doctor, nurses and others...they're still things you hope to avoid as far as possible, but it's more tolerable when the need arises.
Patient comfort is a very important factor.
I certainly see how this affects both men and women.

My mother was recently in a small private hospital in Melbourne. (Cabrini Hospital)
I noticed male nurses on the ward and they attended the male patients returning from surgery and tended to care mainly for the male patients.
One male nurse gave my mother her pills from time to time, but anything like assistance with showering, having her urinary catheter removed and other intimate contact was handled by female nurses.
I assume the men received the same courtesy.
It certainly makes a huge difference to patient comfort.
This hospital has a huge reputation for patient care.
I wonder whether this hospital is one step ahead of other facilities.
I might contact the head of nursing to see whether that is the case and why the system was introduced...was it their initiative or did male patients request male nurses?
Thanks for the interesting discussion.
I'll take a look at the "Lucifer Effect" as well...

artstump said...

To Peter H and Lisa J and others…

I am reminded as I read back through these posts that the responsibility for privacy violations cannot be laid solely at the feet of healthcare professionals. We know that occasionally there are egregious violations that call out for redress and for the sanctioning of offenders, but let’s not forget that those violations are a small piece of the picture. There are many other contributing factors.

Since the conclusion of my cancer treatment regimen, I’ve encountered other, more benign examples of privacy insensitivity. However, these were not examples of malicious or deviant behavior, but thoughtless inattentions to matters of patient privacy and modesty. In my view these incidents were the predictable end product of a delivery system in which fewer caregivers were being pushed harder and harder to deliver greater numbers of services to even greater numbers of people.

Again, I’m not dismissing the misbehavior of power trippers, or profit mongers, or twisted souls. Rather I’m drawing focus to those who have pursued careers in healthcare because of their deep-seated need to be of help to others. It is not unexpected that with some of these genuinely good people the pressure to deliver ever-increasing quantities of patient healthcare has overtaken the charge to remain sensitive and responsive to other patient needs, such as those of privacy and personal modesty.

We’ve all had misfit waiters and waitresses who had one eye on the clock, anticipating that moment when they would no longer have to deal with people. And we’ve all also had servers who took great delight in making our dinner a memorable event for everyone at the table. Well, it’s no different for caregivers. Unfortunately for healthcare recipients, the occasional misfit caregiver stands out even more because the resulting shoddy performance can have such disastrous consequences.

It seems to me that we as patients have some of the most important roles to play in assuring the quality of our own healthcare. I posted earlier that “…we patients must be more than passive recipients of our own healthcare.” Indeed we must do more than simply pay the bill.

To begin with, we must pay careful attention to picking the right doctor, and eventually we must be just as careful in picking the right hospital or treatment facility. No less important, should things not be handled satisfactorily in the course of our treatment, be it the fault of a caregiver, or of an administrative staffer, or of a misguided institutional policy, we have the primary responsibility to speak out and let that quiet injustice be known. After all, there are others who will follow after us, and we have some moral obligation to help clear the road for them – not to mention for ourselves if we must travel that path again.

art stump

MER said...

Good advice, Art. We as patients must also be alert and willing to speak up. We should go into the health care system expecting the best treatment but prepared to react to the worst. Don't get caught by surprised. Be ready. Be prepared. A patient's tone should at first be calm and respectful, regardless of the tone of the poor caregiver. If that doesn't change things, then the patient's tone can get more serious and assertive. But always assume that a careless or thoughtless caregiver is just having a bad day, which may be the case. You can even say that to them. Give them a chance to apologize and make amends.
But be ready. There's no substitute for immediate reaction. Letters can come later and are important. But immediate feedback is essential

MER said...

Here's an interesting blog entry by a medical student/doctor. It's titled "The Amazing Power to tell people to get naked." It demonstrates some of the experiences Dr.s Sherman and Bernstein have related. Notice the use of the word "power." Apparently, this medical student did learn something.

"That day I went home both excited and chagrined about my superpower. I was amazed that I could tell people to do something that left them so vulnerable. "Take off your clothes!" They did! I internalized my smack-down. With great power comes great responsibility. Poking and prodding might seem like nothin' to the young med student, but they're a whole lotta something to the patient."

Apparently, some doctors and nurses forget what this student learned. I wonder if this student still remembers this lesson as a doctor?

Here's the site:

"http://www.medmarg.com/2009/05/amazing-power-to-tell-people-to-get.html

Joel Sherman said...

Thanks for that link, MER.
Although I never had had truly similar experiences, it does remind me of how awkward and unsure of myself I felt on my first few clinical encounters. At my medical school in that era there was very little outpatient experience, which means I saw inpatients who were already in hospital gowns and didn't need to be told to strip. So I never got that sense of 'power.'
But I did get a sense of stupidity like the first time I took a BP on a patient. It was an old mercury blood pressure cuff which I pumped up forever, but nothing happened. I finally got 'smart' and noticed the tubing was kinked on itself. So I unkinked it. Well I must have pumped up the cuff to several hundred mm Hg because the mercury column exploded up and broke the top off the manometer spilling all over the poor patient's bed. I brushed it away. This was before mercury was recognized as toxic; nowadays you'd probably have to call the EPA. Didn't even know enough to get the guy a change of sheets. I really felt stupid. By today's standards, it was worse than stupid, but mercury exposure wasn't recognized as a hazard in those days. After all, we were all used to stirring it around with our fingers in high school lab experiments.

Anonymous said...

I don't think you can lay the issue totally on admin or caregivers but rather both. It seems admin gets so wrapped up in profit trival things like patient modesty become secondary and expendable as long as they can play ignorant and say they address them with "training". How different is this from the caregiver who does the same, not from necesity but for convenience. I have related several times my experience where a female tech performed am scrotal ultra sound on me and walked out and informed a female patient waiting she was going on break and the only tech there was male so if she wanted to wait 10-15 minutes....this was a case of the provider didn't, not couldn't ........so, while Art seems to lean toward the admin side of the continuum of blame...I am not so forgiving of caregivers and would place the blame more toward the balance point, there are to many instances where caregivers can, but don't to give them any type of carte blanche excuse for their part in this...anymore than one can say those who partcipate in any wrong doing be it the holocost, military massacare, or gang violence...we have choices....if providers stood together they could change things...but they don't they choose to become part of the problem...even if they are nicer about it....perhaps we have the Stockholm Syndrome...needing to believe those with direct care of us have our best interest...we need to absolve them, identify with them......I agree admin has its hands all over this...but don't excuse the willing partcipants.....alan

MER said...

alan -- very balanced way of putting it. As you say, there's a deference between can and won't, and cannot. With can and won't, it's could be indifference, laziness, too busy, arrogance, outright hostility -- could be many things. This is where individual responsibility leads. With cannot, we can put more blame on the admin.

artstump said...

While pondering the matter of institutional and professional insensitivity to patient modesty, I wrote in My Angels Are Come, page 285:

“Hospital Gowns

It’s all too easy for casual interlopers, and perhaps for some seasoned healthcare professionals as well, to fail to appreciate the degree to which modesty and privacy foster a sense of identity and security in most people. In this culture the surrender of one’s clothing is a dramatic reversal of a basic norm. It is perceived by many – patients and non﷓patients alike – as a sign of vulnerability, a tacit admission of submission and acquiescence.

The fact of the matter is that the barely﷓sufficient “hospital gowns” used universally in the medical community are not patient clothing at all. Rather they are less﷓than﷓palatable accommodations endured by patients as a courtesy to their healthcare providers. In actuality the sparse covering afforded by such gowns is one of the pre-eminent statements of trust that patients regularly demonstrate toward those who provide them healthcare services.

The broader issue of institutional sensitivity – apropos of patient modesty – has recently received serious consideration by some of the more forward thinking medical facilities in the country. The Maine Medical Center in Portland and the University of Michigan Medical Center, for example, have both taken steps to redesign their gowning garb in deference to their local Muslim communities.
One would only hope that other institutions might emulate their example with similar considerations for patients of all faiths and cultures.”

Lately I’ve been seeing in my Google alerts an increasing number of institutions making the move to gowning innovations, such as double-wrap designs, that claim to specifically address the matter of patient modesty concerns. These developments are being touted as creative and sensitive, if not obvious. I’ve not been logging the references, so I can’t give chapter and verse. But maybe this is one of those ideas whose time has finally come. Maybe this is the beginning of change.

art stump

Joel Sherman said...

I've never really understood who chose these gowns and for what reasons. But I think nearly everyone in hospitals including nurses, physicians and patients would agree that the standard gowns are horrible. Maybe there hasn't been much else available until now, but if so, it can only be because enough patients did not voice vigorous objections. Designing better gowns is hardly rocket science.
It always seems to come down to this, -if enough people voice formal complaints, something will be done. A religious reason for refusing gowns is one the hospitals can't argue with or dismiss out of hand like they can for personal modesty preferences.

Di W said...

I was visiting a relative in hospital recently.
During my visit an orderly arrived with a trolley to take the man in the next bed to surgery.
The orderly and a nurse had to help him to the trolley.
The curtain was pulled across...but the trolley was just outside the curtain.
I could see the back of the patient as they got close to the trolley - his gown wide open displaying a large incontinence pad in mesh (transparent) underpants.
I felt so sorry for this poor man, I turned my back and looked out the window until he was out of the room.
Those gowns are a disgrace...
Every person should be treated in a dignified way and those gowns make it very difficult.

artstump said...

Joel, I agree totally. Filing a formal complaint is the beginning of everything.

Perhaps people should be encouraged to think of filing formal complaints not as voicing reprimands, but as planting the seeds of change. Takes many seeds, to be sure, but each of us is obliged to plant the seeds that we're given.

I repeat here an earlier post that I made to this thread at the end of July, itself a quote pulled from chapter 15 of My Angels Are Come:

“…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.’”

In the face of the mistreatment of a patient it is not enough to simply remain civil, not if that means quietly accepting injustice. As a patient, or as someone responsible for a patient, each of us has the moral obligation to challenge the injustice that we experience. For the vast majority of us that doesn’t mean filing lawsuits or going public, but rather taking a few moments to make a statement for the record by the filing of a formal complaint, either with the hospital or with the governing authority.

Take the time to plant the seed you’ve been given. It really will make a difference.

art stump

MER said...

I agree with the letter of complaints, Art -- but I still say it's essential to confront the violation at the moment it happens as well. This can at least go for those of us who are now savvy about the possibilities. For those who don't know what to expect -- they'll just have to learn.

Expect the best but prepare for the worst. Don't get caught by surprise. Then, depending upon the response, and depending upon how serious the violation is, you can still write the letter. The letters start a paper trail -- but the verbal confrontation at the precise moment will be a shocker for most violators. They won't expect it and, if they have any decency, they will back down and may apologize. If not, don't back down. Right there, right then, start working your way up the food chain from supervisor to supervisor.
The further the patient and the violator get away from the incident, the more our psyches and poor human memory take over. For the violator, the incident just fades into the past and becomes one of many kinds of behavior that happen every day. The attitude I get from several patients who have experienced modesty violations --
1. Shock. As you experienced it, Art.
2. Trauma. Just shut down and let it happen.
3. Glad that its all over. Recovery in the hospital.
4. Just get me out of here.
3. As time goes by, to protect ourselves from psychological damage, we say. "Oh, well. The surgery was successful. I'm cured. And I'll never see those people again. I don't know them. They do't know me. It's over. Let's just move on."
4. In most cases, the letters don't get written. Your case, Art, is rare.
That's why the modesty violators must be called on their behavior the moment it happens.

Joel Sherman said...

This link was posted on Bernstein but is even more pertinent here to Art's story. It concerns insensitive personnel dealing with a patient's prostate condition.
Please note the wide variety of opinions and how some don't seem to understand that every patient is different and deserves respect according to their own needs.

Dawn said...

That is so true....in most cases the letters don't get written.
I was reading about women who saw a dermatologist in Melbourne who was imprisoned for multiple sexual assaults.
The police went through his patient records and called women.
They were surprised at the number of women who'd made no complaint after blatant and serious sexual assault.
No one can say how they'll react to this sort of thing...privacy violation or sexual assault...some people bury it in their minds, some people are too shy or embarrassed to complain, others became depressed or were still in extreme shock trying to cope...
If every woman who'd had an issue with this doctor had complained, they would have caught him years earlier.
It's an extreme example...but if people don't complain about sexual assault, I guess they're unlikely to complain about modesty violations.

Anonymous said...

I agree with MER that it needs to be addressed at the point of treatment. That is tough sometimes for many of the reasons presented. I would suggest a little prep. Write, call, or e-mail the facility in advance if possible. If you make the effort upfront it does several things, it might prevent the issue from happening, but it will at the very least give you leverage in stating I was told, and I feel more confident-comfortable knowing I have this on my side. Its really hard for a provider to argue with I was told....alan

Joel Sherman said...

Of course it is better to protest immediately right when the violation happens. The situation may well be remedied right then and there will be no need to go further.
But the large majority of patients are blindsided the first time it happens to them, just like Art on this thread. They are stunned and unable to respond at the time. How many of you had a response ready the first time an incident like this happened to you? Many of you are here because you don't want to be caught unawares again. It remains important to complain later when you get your thoughts together and have had a chance perhaps to review blogs like this. This is likely still valid even when it's 3 years later like in Peter H's post of Sept 1.

artstump said...

To Joel and Dawn from September 15…

Joel, thanks for the link to Bernstein’s circle. The invasive procedures that make up cancer treatment give plenty of opportunity for insensitive caregivers to show their worst behavior. In my post of September 2, 2009, I suggested a mandatory evaluation program administered by a third party, whereby every patient exiting a healthcare delivery facility would receive an evaluation survey form to be filled in at their leisure and dropped in a mailbox. By design the program would assure anonymity for the patient and allow venting as needed.

Dawn, I have to wonder how many abused patients would have taken the time to fill in the few lines on such a form, if they were assured anonymity and if all they had to do was drop the form in a mailbox. Maybe that kind of feedback system would serve much more than privacy and modesty issues. Maybe more than anything it would serve the issue of patient safety. Details, details, I know… but on the face of it it’s such an obvious tool.

art stump

MER said...

Don't missumderstand what I'm saying. The follow up letters are important and need to be written. They create a paper trail.
But I think there's a serious need to educate patients to be more assertive. We don't want to frighten patients, make them think that modesty violations are the standard. I don't believe they are. We don't want to make patients think they go into a hospital situation expecting this. But we need to give them the ammunition and the self-confidence to confront the situation when it arises -- or even better -- be proactive to try to prevent it from arising.
This is one major mission of a group that people are talking about starting for patients. I can see producing a pamphlet about this that we could try to get hospitals to distribute -- or we could find some other way to distribute them.

Anonymous said...

I AM A 47 YEAR OLD MALE, AND I WAS BEING BATHED IN MY ICU CUBICAL BY A NURSES ASSITANT COMPLETELY UNDRAPPRED WHEN TWO OF HER CO-WORKERS CAME, OPENED THE CURTAIN, AND ASKED HER WERE THEY WERE ALL GOING FOR LUNCH. THEY BOTH STOOD IN THE DOORWAY, OBLIVIOUS TO WHAT WAS TAKING PLACE, NOT EVEN ACKNOWLDGING MY PRESENCE, AND TALKED FOR ABOUT 30 SECONDS. THE ASSITANT NEVER EVEN ATTMEPTED TO CONVER MY GENITALS. NO ONE SEEMD TO THINK THIS UNUSUAL AT ALL.

TO MAKE MATTERS WORSE, i DON'T BELEIVE ANY OF THEM WERE MORE THAN 20 YEARS OLD, IF THAT.



JOE

MER said...

Joe: May I ask why you didn't object to that kind of behavior immediately when it happened? Were you caught by surprise? Did it seem to happen so fast that there didn't seem to be time? Were you too embarrassed or intimidated to say anything? I realize that these emotions happen. I'm trying to learn the reasons why men don't speak up when these kinds of violations happen.

MER said...

Part 1

I'm interested in male psychology, gender differences. Why do some many men today go into the hospital and just let things happen to them? Why are they so passive? Now, patients in general are like that, regardless of gender. We've talked about the many factors contributing to why patients feel this way. But I do think women speak up more than men, and because there are so many female caregivers around for them, the have less need to speak up about intimate care.
Here are a few quotes from "The Real Man Inside: How Men Can Recover Their Identity and Why Women Can't Help." by Verne Becker.

After talking about always giving in to women in his life, he writes: "At times my frustration has been so great that I would even say I felt victimized by women. This may strike a few men and many women as a harsh and unfair statement, especially after all the centuries of domination women have had to endure at the hands of men. There is a key difference,however. Most of the men today who feel victimized by women -- including me -- have brought it upon themselves by handing too much of their won power over to women." (39-40)

As I read these blogs, so many men feel victimized by female nurses -- but so many men just don't speak up. So -- what's going on?

"Because we depend on the approval and acceptance of others for our sense of well-being, we are quick to say yes when we're asked, especially by women, to do things. In a way we treat "yes" a lot like "fine," because we so often say it automatically, without stopping to ask ourselves, Do I want to do this? Do I need this? Does this fit me?" (40-41)

In medical situations, men don't say "yes," they often say nothing, or give an indefinite response, or pretend to say "yes" so as to appear fearless and macho.

MER said...

Part 2

I think the key to this is in the next two quotes:

"For life to be focused and purposeful, we need to establish various kinds of boundaries around ourselves and within ourselves. These boundaries define the edges of our selves -- who we are and wo we are not, what we desire for our life and what we do not, what we believe and don't believe, what is our responsibility and what is not, what is our feeling or opinion and what is someone else's, what we will tolerate and what we will not...Boundaries need to be strong enough to withstand attack, yet flexible enough to be adjusted if we gain new insight into ourselves." (42-43)

Why don't many patients establish these boundaries when the enter the health care culture? Perhaps they believe it's expected of them that they drop these boundaries. Maybe it is. Perhaps they're afraid, fearful that the lack of approval of health care workers will negatively affect their treatment. That's all true. But I think with many men it's this:

"So many men today have no idea who they are on the inside, underneath the various roles they prop themselves up with. And since Western Culture at the end of the twentieth century has called many of those roles into question anyway, men have even less structure to support their wobbly exterior. More and More of them are resorting to the passive approach to living...'Well, if I don't know who I am, then I'll just be whatever X wants me to be." (44)

Men and boys in our culture have lost touch with their core, with who they are, with what it means to be a man.

With this comes frustration and anger, even violence. Maybe this explains (certainly doesn't justify) the terrible amount of male violence upon women in our culture. Men blame women for their individual, personal failure to be less passive and stand up for themselves. They don't stand up for themselves because they no longer know who they are or what they stand for.

Perhaps this explains some of the extremely hostile attitudes toward female nurse on these blogs. In many cases, they're not doing anything to you that you're not either allowing or tolerating. And when men realize that, it makes them angry and hostile toward themselves, a hostility which they transfer toward the nurse.
Anyway, enough. What are your reactions?

Joel Sherman said...

Well, that's heavy stuff MER.
Not sure what it means to be a man nowadays anymore than most women know what it means to be a woman. The choices are unlimited if you have the ability and are given the opportunity. There are no standards anymore.
But re healthcare, the vast majority of patients accept the conditions they're given in an unfamiliar environment. Most men don't know that it's OK to be embarrassed and to ask to have it minimized. Many have never been taken care of by a male nurse and don't know it's an option, which in fact it may not be. Women can feign surprise if they get a male nurse or tech, but every guy knows that they're going to have a female nurse.
Don't think anything will change until male modesty is more widely recognized and respected than it is. These blogs don't reach even 1% of our population.

MER said...

I understand what you're saying, Joel. Being a man? Being a woman? What I got out of that book was the boundaries issue. Knowing what you stand for and being willing to stand up for it. That isn't a gender issue but a human one. But the key point for me was: "Boundaries need to be strong enough to withstand attack, yet flexible enough to be adjusted if we gain new insight into ourselves." That's a point I've tried to get across in some of my posts. Don't assume the worst. Study the situation, the context. Give caregivers a chance to do the right thing. Keep those boundaries strong yet flexible and be willing to consider adjusting them if the situation warrants it. But -- to do that you've got to have established boundaries, values, places where you'll may take a stand. This is an area of education for patients. Patients need to realize they can negotiate the phrase "The patient is in charge" with the various caregivers." They don't have to just sit back and take everything that's tossed at them.
This is where I see an advocacy group moving -- education webpages, pamphlets, strategies to give patients knowledge and with that the self confidence to stand up for their values.

Hexanchus said...

MER,

I agree with your synopsis on the need to learn how to establish the boundaries that best fit each individual's value system. Yes an advocacy group could help with this.

The big question that remains is: "How do we get the health care system to acknowledge and respect the patients' right to set these boundaries?" I think that one will be even tougher......

artstump said...

Thoughts about quiet injustice…

We can easily speak of men being victimized by female nurses, but I think that clouds the issue unnecessarily. Each of us can experience mistreatment in transactions of any sort, be they in restaurants, hair salons, supermarkets, or healthcare facilities. But when we choose to characterize an experience as victimization, we add untold layers of calculation and treachery to the motivations of the perpetrators.

Entering a healthcare culture is different from entering the cultures of other venues. Our options are right off different from what they would be if we were entering a restaurant, for example. When we enter a healthcare facility, we express or admit outright our dependency on the facility and its people. By entering the facility we admit our need for care, not for approval or favor, and we acknowledge the ability of the institution and its people to provide the care that we need. Some of the most comfortable boundaries that we’ve staked out for ourselves in virtually all other venues we relinquish of our own free will when we cross the threshold and become a patient.

So what, then, are all bets are off? No, not at all. But now trust has become part of the equation and an important part of the give and take that will follow. If we feel mistreated or humiliated in the course of our healthcare delivery, we have a moral duty to make our displeasure heard, whether it be in face-to-face exchanges, in letters to the institution’s CEO, or in conferences with an attorney. In all of that, however, we need to be clear about what it is that has happened, what it is that we know and what we don’t know.

Without question, being on the receiving end of a distressful experience can challenge one’s sense of perspective. There are times when obviously inappropriate behavior has come into play, but there are other times where we’ve fallen victim to situation and circumstance. Talk it out with friends and family, or with clergy, or with legal counsel, and in the end make an explicit decision about the action that you will take. Don’t in any case just let yourself get so comfortably distant from the experience that even though you know you’ve been wronged, you find it acceptable and convenient to just live with it.

art stump

VNB said...

I know many women (and I assume men) go into "brain freeze" during intimate exams or when exposed...
In a very traumatic setting (like rape) you can have an out of body experience...you mentally leave your body and shelter elsewhere.
It seems to be a coping mechanism.
I read an account years ago written by a man who was raped at about 14...he felt like he was looking down on the abusive scene. His body was completely lifeless and detached from his mind.
There seems to be a tendency to allow, whatever it might be, to happen and then try and deal with the mental damage later.
Why didn't I say something?
Why did I allow him/her to get away with that?
Why didn't I fight back?
Why didn't I stop whatever was happening and leave?
Why didn't I ask for the curtain to be closed or the medical students to leave the room?
Whenever we feel like we've been taken advantage of, were not in control or we're treated in a humiliating way, it can lead to bitterness, hostility, depression and obsessive thoughts.
One of my friends suffered humiliating treatment when she was giving birth and out of control.
She "turned off" and allowed it all to happen.
Over the following weeks she became quite emotional, easily reduced to tears, seemed preoccupied and finally, became clinically depressed.
It all went back to the treatment at the hands of the medical staff.
She found it difficult to talk about the things that had occurred as she found it humiliating to admit to others that "she" was treated in that way.
Why did they treat "me" in that way?
Why did "I" allow that to happen?
We blame ourselves and look at our conduct.
I really think the "power dynamics" (I've heard that expression a few times and think its spot-on) make it an unfair contest.

artstump said...

To VNB of September 22…

Beautifully put observations. I’ve heard and read about many accounts of postpartum struggles, but I’ve never of heard one attributed to the mistreatment of caregivers. Maybe it’s not an uncommon experience.

From my July 9 post I commented on the exercise of “the power dynamic” at the hands of an institution, because that was my experience:

“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.”

The power dynamic did indeed make it an unfair contest for your friend and for many others. But perhaps now your friend has a clearer perspective on what it was that happened back then. Perhaps now a visit with an attorney would help her regain some of that power balance back into her own life.

From my perspective long after the fact, taking action is critical to standing up again, both emotionally and psychologically. Winning the action is not the goal; taking the action is. Some actions will succeed and some will not, but waging the good fight has its own reward, especially for one’s own sense of worth and dignity.

art stump

Joel Sherman said...

Good post Art. I think you do indeed have a good understanding as to why the hospital used you as their unwitting volunteer to attract employees. It wasn't personal; you were just convenient and available at no charge. Of course you were also a guy; it's unlikely that they would have exposed a woman like that, especially to a high school boy.
Taking action does help one get over the trauma. You don’t necessarily have to contact a lawyer to lodge an effective protest, which can be expensive with little likelihood of major financial gain. Complaints to appropriate state agencies or JCAHO can also have the desired effect.

VNB said...

Birth trauma certainly happens and there are various support groups around....my friend joined a support group run by a local psychologist...there were 26 women in the group.
I don't know whether its "common" though...
I've heard many women say, "you collect your dignity on the way out of the hospital", but that may be a reference to the exposure necessary to give birth and some of the undignified procedures.
There is a website for birth trauma victims in most countries...some of the birth experiences are very bad.
I can understand why these women end up feeling traumatized.
I know myself...doing nothing about someone invading your personal space and treating you badly can stay with you.
Most people have experienced something like that..from an unwelcome pat on the bottom to assaults.
If you take some action, any action, even putting the offending person in his place, publicly shaming him/her...it can really help you to move on.
A friend was assaulted on a very crowded train in Japan a few years ago. (she was an exchange student) At the top of her voice, she shouted for someone to push the emergency button because a man was sexually assaulting her. In that way she took control and stopped the assault.
None of us can say how we'd react in that situation....whether we'd be silent or make a scene.
vicki
http://birthtraumacanada.org/

MER said...

When we say, in Art's case, that it wasn't personal, I'm not sure what that means. Give me an example of a case where it was personal? I'm not saying it doesn't happen, but if it starts getting personal, we're all in real trouble when we enter the hospital.
The fact that it wasn't personal, to me, doesn't mitigate the behavior one bit.

Joel Sherman said...

By not personal MER, I only meant that it could have been any guy they picked on. They had no personal animus towards Art.
Of course they might have thought that he'd be more likely to cooperate or at least not complain about it than someone else. I doubt that Art knows why they picked him. He stated a friend said it could have happened to anyone, and he was probably right.

I have copied VNB’s post to the women’s thread where it is also appropriate.

MER said...

That's my point, Joel. Only the worst systems and people will do these kinds of things for personal reasons. These kinds of violations like what happened to Art are systemic, products of a faulty culture with a broken system. Too often the perps really believe or have convinced themselves that everything's fine and what they're doing is in everybody's best interest, including the patient.
For a caregiver to pick on a particular patient for personal reasons to embarrass or humiliate him, or for whatever reason -- that would be horrible. I'm not saying it would never happen, but it's extremely rare, and also probably hard to prove.
These problems are systemic. A hospital's culture determines how frequently these violations happen and how serious they are -- and this can be influenced by the entire health care system's (in general)culture has many traits in common.

Anonymous said...

Mer

These things happened all the
time in hospitals in the 70's 80's
and yes,even today. They are not rare!


PT

MER said...

I'm not sure what you mean by "These things..." PT. If you mean general modesty violations that are part of the health care system, embedded in their culture -- if that's what you mean, I agree. If you mean modesty violations of a personal nature that are specifically aimed at individual patients, esp. men -- then I disagree. I'm not saying they never happen. But they are rare if they do. There may be a small percentage of "evil" people in the health care system, but they are a small group.

Anonymous said...

Mer

There are too many privacy violations that are directed at
men deliberately ,individually.
Here are some of a few examples
at a major medical center I've seen. Oncoming female nurse walks into the patients room,vented male
patient in his late 20's. Female
nurse walks into patients room
and says " is patient married and
looks under the patients sheets at
his genitals."
At same medical center a major
male celebrity is hospitalized while doing a movie. Seems he comes down with a stomach virus yet
he is continually being barraged
by nurses not assigned to his care.
Wanting to do blood pressure
checks and so forth. These nurses apparently abandoned their patient
so they can come down 2 flights of
stairs to violate the privacy of this patient. These behaviors go
on 24/7 Mer. Nonstop. They are
not rare.


PT

artstump said...

Patient Privacy & Dignity: an idea whose time has come?

Have a look at this: http://www.dexigner.com/product/news-g18793.html

People are talking, people are thinking. A forum like this does have an impact. Keep up the good work.

art stump

MER said...

Art -- That website comes out of the UK. I've found many sources from UK, Austrailia, Canada -- that seem to prioritize patient dignity. Rarely, though, do we ever get dignity defined. The notion seems to be -- oh, who doesn't know what dignity means? I have found a few articles from British medical journals trying to define dignity and respect from a ethical/philosophical point of view. Haven't found any in the US.
I'd like to see this kind of website come out of a US hospital or clinic or professional medical organization.

artstump said...

How the Brits do it…

MER – Interesting point about the UK. I use a Google Alert for patient privacy matters and am accustomed to seeing disturbing reports out of the UK about the failure to provide basic levels of privacy, let alone dignity, in healthcare delivery. The most odd to me were examples where hospitals were finally being forced to offer single sex rooms for their patients. I supposed this was a bit of the downside of national healthcare. Then I saw an article in the Oxford Mail (http://www.oxfordmail.co.uk/news/headlines/4638107.Have_your_say_on_patient_experience_at_the_NOC/) about a hospital (Nuffield Orthopaedic Centre) actively seeking patients’ feedback and using a video recording booth on premises to do so.

I contacted the hospital via email and had a brief exchange with the friendly lady (Melanie Proudfoot) who had a hand in pulling the pieces together to get the booth up and running. It’s all preliminary and very experimental at this point, but they are finding that most patients shy away from video and prefer to use the voice-only mode of the booth.

I wasn’t expecting anyone there to freely open up about their own hospital’s experience with strong negative feedback, lawsuits, and the like, and no one did. Still, I posed the question about the hospital’s having any sort of ombudsman on staff for patient complaints that go beyond matters of comfort and sociability. I learned that all NHS (presumably National Health Service) hospitals have a built-in ombudsman service that is multi-tiered (for varying levels of seriousness and patient satisfaction).

I didn't get much more than that except that the NHS is the governmental agency that tracks, compiles, and reports incidents of patient complaints. Seems a bit like the fox guarding the henhouse. Nevertheless, given the nature of bureaucracies, I expect that buried deep in NHS regulations and response codes are detailed definitions for words like dignity, privacy, and satisfaction.

art stump

Joel Sherman said...

Art, if you read through this blog (and that has become a lengthy proposition)you will find that in general, the Brits are more concerned with privacy and respect for patients than we are. Probably over 2/3's of the studies on chaperones for instance are from the UK. The women's thread also has far more references from the UK than this country.
Don't really know why this is. I think American medicine is more concerned with costs, profits and liability. whereas the UK is relatively free of these constraints and considerations.

MER said...

Another factor, I've been told -- having a national health system results in more national standards in many areas, including privacy and modesty. Also, generally, patients get more opportunity to contribute to these standards when committees and commissions are created. Patients get a voice. I'm not convinced this is happening in this country.
Now, whether the NHS in UK lives up to these ideals, that's another question. They've had major problems. But it seems to me that when these problems become unveiled, the public gets more of an opportunity to contribute to the fix -- it's a political issue, not a private enterprise, business issue. Only recently has health care become a big political issue (granting that medicare and medicade are public).
You'll find on the web all kinds of standards set up for all kinds of exams, procedures, etc. that are standards throughout the UK.

artstump said...

A note about the good guys and the bad guys…Part 1

People often cite their concerns about the quality of future healthcare that they might receive from an institution with whom they have raised objections or complaints about patient privacy issues. Human nature being what it is, I have to feel that those concerns are justified in many cases. In other cases, however, as some have already noted, patients who have filed complaints are likely to receive even better care during subsequent visits.

My experience on the receiving end of healthcare delivery tells me that many people working in the healthcare system would be better off working in almost any other profession. They lack even the most basic empathy for the plight of their patients and consequently have no way of monitoring and controlling their own behavior in the context of patient needs. In short, they lack sensitivity. Couple this with an institution whose training and education programs for its employees overlook or neglect that shortcoming, and we have a ready stage for unpleasant and in some cases traumatic exchanges between patients and healthcare delivery personnel.

On the other hand, my experience on the receiving end of healthcare delivery also tells me that there are many wonderfully caring people working in the system, people who are born caregivers. These are the angels in the system. To be treated by one of these extraordinary individuals is to know that calling them “angels” is not an overstatement.

The bottom line is that filing a complaint about privacy abuse may sometimes make things more difficult for future treatment, sometimes not. Good people who are made aware of their system’s shortcomings will extend themselves and try their best to make things right for their patients. They may have an uphill fight within the organization to effect change, but they will make the effort because they genuinely care about their patients.

As patients, our part is not to cower passively in fear of future maybes, but to take the action called for if at all possible. Our first motivation in doing so should be to give the benefit of doubt to the people treating us and to let them and the host institution know that there is indeed a problem. That’s not to say that those people or that institution will always agree with us, but we should make our first effort one of good faith notification: e.g., “I have experienced something that is very wrong in the care that I received here, and I’m asking you to take corrective action.”

For those of you who have not read My Angels Are Come, I am presenting in the next section (Part 2) an excerpt from chapter 15, pages 109-110. It captures the genuine concern of my oncologist at Memorial Hospital in the wake of my formal complaint about a disturbing privacy violation.

art stump

artstump said...

A note about the good guys and the bad guys…Part 2

Excerpt from My Angels Are Come, pages 109-110:


“Moments later I was seated in a small examination room having a debriefing meeting with nurse Julie. We quickly stepped through the items on my weekly debriefing agenda, the Center’s periodic update of the state of my health for the record. Following the completion of her portion of the interview nurse Julie abruptly excused herself and left the room.

Her departure was followed almost immediately by the arrival of Dr. Somers. As yet no one in the Center had mentioned a word about the complaint that I’d raised, not until Dr. Somers entered the room.

The first thing that Dr. Somers did after shaking hands with me was to offer a sincere apology for the incident of November 13. We talked openly about the matter.

He felt personally that participants in the Shadow Job Program should be limited to observing incidental patient procedures such as cast applications or dressings for minor abrasions and contusions. Anything so private as radiation therapies for various personal organs should automatically be considered out of bounds. I nodded my agreement.

Indeed Dr. Somers then thanked me for having raised the issue and said that he had already discussed it among the staff. He was glad that the issue was on the table, he said, because there were perhaps many patients who objected to certain of the Hospital’s procedures and didn’t have the strength of personality to feel that they could say anything about them.

I asked if the folks in the back, the radiation therapists, had been part of his discussion. Yes they had. I noted that this was the first time that Megyn had not participated in my treatment and that I hoped she was in no way offended by my action. He assured me that she was not, adding that they had a machine down today and were having to run extra treatments through my treatment suite’s rooms.

He further assured me that I’d not become anathema to the staff at the Center because of my initiative; as we moved forward with my treatment program, he said, I would not be seen as ‘the difficult patient,’ a la the beleaguered Elaine Benis character in one of the classic Seinfeld television episodes.

We shared a knowing smile over the next few minutes as he proceeded to summarize that episode for me with all of the detail and fondness of a die-hard Seinfeld fan.

Dr. Somers’ conciliatory account of the reactions of his staff may or may not have been altogether candid. Jeff, the male therapist who gave me my treatment today, had stood with a modesty towel separating the two of us while I disrobed. He’d never done that before.

On the whole I was feeling more brazen than strong of personality as the result of the action that I had taken, and I had to feel that issues of discomfort and uncertainty were probably far from resolved. Still, everyone seemed well-intentioned, and I found that reassuring. I wouldn’t question their efforts.”

Of course, this was a doctor-patient conversation. The hospital had its own rationale and its own appreciation for the seriousness of the offending behavior. My subsequent struggles with the hospital and its management clarified for me the conflicting motivations in play sometimes between good caregivers and the organizations that house and feed them.

art stump

Joel Sherman said...

Thanks Art.
A few points. Of course there's always the potential that any complaint can affect your future care in a hospital or office, not just privacy complaints. It is important that most complaints be done respectfully, assuming that the other parties intentions were good. Of course that may not always be possible, especially if the complaint was lodged against a specific person. Try making the complaint impersonal whenever possible. But most complaints will result in your receiving improved therapy, not worse care. Your complaint immediately ended the outrageous policy the hospital had in place. The only problem was getting the hospital to admit that they were at fault, but formal apologies get mixed up with concerns about liability. The message is important: a single complaint can change a policy.

A year ago we were on vacation when my wife dislocated her shoulder. We went to the only local hospital where the ER is staffed by nurses and a PA only, no physicians. Her care was definitely sub par and after several hours we ultimately had to be transferred to a major regional hospital. There the injury was reduced within a half hour. I wrote a letter to the original hospital with that complaint, saying that I know that the personnel there tried their best, but my wife would have been far better off if they had just transferred her immediately. The hospital was reluctant to admit a problem, but finally did only after I commented that I had no intention of taking the complaint any further as my wife suffered no ongoing difficulties from the unreasonable delay. Most institutions appreciate constructive complaints and will try to remedy the situation.

MER said...

One of the most important sentences from Art's last post: "He was glad that the issue was on the table, he said, because there were perhaps many patients who objected to certain of the Hospital’s procedures and didn’t have the strength of personality to feel that they could say anything about them."

Getting the issue "on the table." I've written much on these blogs about how important it is for patients to get issues on the table -- issues that hospital know are issues but keep hidden. That's what we see here.

This doctor appreciated getting the issue on the table. Others will not. Doesn't really matter. The important thing is to get it on the table, out front, in discussion.

When hospitals formulate policies, how many of them have "real" patients in the committees -- I don't mean doctors and nurses who think that just because they'e been a patient they can represent patients. I mean "real" patients -- people with no medical training but who have had hospital experiences. I don't mean patients with an ax to grind -- but those who know what it's like to be in the inside with little medical knowledge except what's being told to them.
I don't know the answer to my question? Do hospitals invite patients on their policy and protocol committees?

Joel Sherman said...

MER: I don't know the answer to my question? Do hospitals invite patients on their policy and protocol committees?

Every hospital is different MER. My guess is that very few have real patients on committees, and by that I mean patients who have no other connection with the hospital. Obviously some committees would have prominent hospital supporters or members of the community on them who have also been patients. Some hospitals set these protocols with only nurses and administrators. They may or may not include one or two physician hospital employees. Many fewer institutions include independent physicians.

Anonymous said...

Do hospitals invite patients on
their protocol committees?
Absolutely not. Fact is many don't have protocol committes per
say. If there are problems then the
individual department managers will
review protocols. As an example,several years ago a small boy was killed in an mri scanner.
There was a metal oxygen tank left
in the room that was made of ferrous metal. A big no no. Oxygen
tanks inside of mri scanners are
to be made of aluminum. At that point risk management intervened
along with the department managers
to review protocols.


PT

artstump said...

A Place for Initiative

Is patient privacy becoming a hot topic? Maybe so. The story linked here ( http://www.dotmed.com/news/story/10471# ) is yet another touting the recent development of privacy conscious gowns for patients. Seems private enterprise is catching wind of the growing concern for patient dignity and privacy.

Blog sites such as this are part of that enabling, encouraging open discussion of the self-serving policies and practices that may be desirable for hospitals and other healthcare facilities, but are at the same time injurious to the mental and emotional well-being of their patients.

Note in the cited story that the development of this particular gown was due to many years of uncomfortable experiences with flimsy, revealing gowning that the co-creator, a woman named Pam Corby, had to endure as the result of an automobile accident. Her experience was a call to action for her, one to which she responded in her own way.

Each of us needs to be aware that our response to our own unpleasant healthcare experience is part of a developing picture. None of us needs to take on the healthcare industry single-handed, but we must remember that every voice raised in objection plays an important part. When a healthcare provider inflicts distress and humiliation on a patient and is appropriately challenged by that patient, that exchange tells a story and becomes part of a record. When a patient suffers mistreatment and no one is called to account, that tells a story as well.

Being a patient is not a passive undertaking. When we become recipients of healthcare services, we also assume a portion of the responsibility for their maintenance and betterment. And we need to do that one voice at a time.

art stump

Clare said...

I agree...
Sadly, some patient are unable to stand up for themselves or they don't matter that much as public patients.
My sister-in-law worked in a large public hospital for 12 years and saw many examples of patient abuse. (not physical abuse...more abuse of rights and privacy) Many patients were not treated in a dignified and respectful manner.
It was rare for these patients to complain...many had trouble expressing themselves and were intimidated by the system.
One uneducated woman did complain and had a genuine complaint. Her ability though to make a complaint was compromised by her lack of education, her ability to communicate and lack of resources and contacts. The system didn't really worry too much about these sorts of people as offensive as that sounds....and is...
I don't believe these things happen all that often in private hospitals. Paying patients matter and these hospitals want good word of mouth. These patients can also cause problems for you...wealthy or comfortably off, educated, confident, well-spoken and they're not afraid of the system - this gives them power and a "face".
I recall a Judge having an issue and causing a huge fuss. MY SIL and her workmates were all counselled to be very careful with "these" sorts of patients.
There was no lecture about being generally respectful to all patients, just be careful with patients who could, "cause us grief".
I see it as the difference between economy and business class travel. Some of the treatment of economy class passengers would never happen in business and if it did, the airline would come down hard on the stewards - they want and need high-paying passengers.

Joel Sherman said...

I'm not as encouraged as you are Art. Maybe I'm just more cynical. For the past 2 years I've followed similar ads for the blog. I'm not sure they are becoming more frequent. Modest gowns are most often advertised in conjunction with an appeal to hospitals who serve many Muslims, a narrow market. I haven't heard of them being pushed for general usage, or offered to patients as a routine.
Most people never ask for something more protective; they likely don't know they're available. And in most hospitals they're not available. If you ask, what you usually get is a second gown to be put on opposite to the first. That is one is open in the back, the other in the front. That at least is an improvement enabling your rear to be covered in the halls.
More patients need to make formal complaints.

MER said...

Here's an idea for some creative businessman.
Why not market a modest hospital gown, various sizes and styles, for both men and women. I know these are available, but nobody is really marketing them with any effort.
Advertise. Advertise widely. Connect it with this whole modesty issue. More importantly, market to patients that they need to be proactive about this.
Let's give patients the ball and let them run with it. Patients will take their personal gowns to the hospital or clinic with them.
"This is what I'm wearing. Period."
Let's see these hospital and clinics turn them away. hey wouldn't have the guts.
Now, in fairness, caregivers need to accomplish specific activities to help patients get better. These gowns need to designed to the patient has his or her modesty and at the same time the doctors and nurses can get done what they need to do. But these two goals are not incompatible.
How much would these gowns cost? $15 or $20 at most? It would be worth it.
Any businessmen out there willing to take a risk? It could turn out to quite successful.

Joel Sherman said...

MER, I wouldn't want to invest personally in a hospital gown. They are most frequently used for post operative or post procedural patients. The whole idea is that if you get blood or other bodily fluids on it you can easily change it for a clean gown. But hospitals could certainly do it.

MER said...

Joel:

Patients go in for physical exams, minor procedures, all kinds of little events and are handed gowns and expected to wear them. I can see patients having their own gowns for these events.

Joel Sherman said...

Valid point MER. A personal gown would be fine for office visits and minor procedures though for most visits the patient would only be exposed to their personal physician.
It wouldn't work well for major in hospital illnesses.

artstump said...

Two Gowns Are Better Than One

From My Angels Are Come, chapter 18, page 121, an account of my own sandwich arrangement with two hospital gowns. In the context of the procedure about to be performed and the illness being treated, there was no expectation on my part of increased modesty associated with the use of two gowns. Rather, the double-gown prescription conveyed a reassuring message about the awareness of my caregiver team with respect to my feelings. It demonstrated their concern that my discomfort should be minimized as much as possible.

By the time nurse Rachael arrived to escort me to the procedure room, I had dressed in the requisite double-gown attire: one gown front to back and one gown back to front, plus socks and absolutely nothing else. The Valium——the first that I had ever taken——had already given me a pleasantly dizzy high, something that I noticed as I got to my feet to greet her.

She led me down the hall in a mutually unsteady gait, arm in arms, as was our habit of late. It occurred to me that although this was a far lighter occasion than our previous stroll down this very same hallway, nurse Rachael’s presence was still a great comfort.

Notwithstanding the imminence of the dreaded Volumetric Mapping Study procedure, I was looking forward to spending some time with this special woman, a person that I found genuinely fascinating. So with Valium flowing through my veins and Rachael on my arm, the mood was, well… enchanting. I would have followed her anywhere.

Today, however, nurse Rachael chose to escort me to a room that I’d not visited before, a room overrun with hi-tech equipment. Hi-tech, I thought, that’s a good sign. But then I caught sight of the oversized, heavy-duty exam table that was standing prepped and ready for my arrival, a table equipped with mammoth stirrups bolted to its sides.

Oh s- - -, I thought.

There were suddenly many guiding hands and cajoling voices helping me onto the table, hoisting my legs up high and splaying them out wide, stirrup-to-stirrup. I paid little mind to the many Velcro strips used to secure my body to the tabletop, but when I noticed the heft and width of the really monstrous straps clamping my legs into the stirrups, I began to seriously reconsider what was about to happen.

Two gowns were definitely better than one.

art stump

MER said...

Art -- As I read you last post, I'm trying to figure out what difference one or two or any gown made considering the exposure needed for your treatment. Are you talking about the walk to the room? Is that where the two gowns felt more secure?

Also, you've highlighted the use of drugs to relax patients and/or mitigate embarrassment. The assumptions seems to be that caregiver gender isn't the issue, that the treatment is what may be embarrassment regardless of caregiver gender. Or, do the relaxing drugs make a patient stay still, not move which is necessary for the treatment? I just wonder. Are there other ways to help patients relax? Are drugs just the easy way? I think of how drugs like this were (and are?) used to settle down mentally ill patients. If fairness, mental health orderlies and caregivers have been assaulted and hurt by patients who have attacked them. They used to tie down the patients. The drugs stopped that cruel practice.
Anyway -- this a thought on exactly why these drugs are used. Is it for the benefit of the patient, or is it merely for the convenience of the doctor -- or is it a combination of both reasons?

artstump said...

To MER from 10-16-09…Part 1

I explain elsewhere in chapter 18 that the Volumetric Mapping Study (VMS) is technically called a transrectal ultrasound of the prostate. In that procedure a sizeable ultrasound probe is inserted into the rectum up next to the prostate so as to get precisely clear ultrasound images of that gland. I can imagine that the doctor might appreciate the calming effect that the Valium might have on his patient, but the declared purpose of the drug is to relax the rectal muscles and facilitate the unimpeded manipulation of the probe.

There’s no question that modesty takes a back seat during the VMS procedure, as the subject is totally exposed to the environment of the procedure room. Another excerpt from chapter 18:

Since I was strategically naked to the world, I asked aloud of anyone in the room who might be listening whether the two video cameras mounted in the ceiling behind the doctor and staring directly at my extreme nakedness were live. No, Dr. Somers assured me, they only used those cameras when they had a procedure where they had to leave a patient alone on the table for whatever reason, in which case they used the cameras ‘to monitor her.’

One gown or two, my exposure was essentially the same. As I posted earlier, I understood the two-gown prescription to be more like a thoughtful gesture from my caregiving team, acknowledging the rawness of the procedure that I was about to undergo and letting me know that they were sensitive to my possible feelings about that.

art stump

artstump said...

To MER from 10-16-09…Part 2

On a personal note, I opt for a clear head in medical situations whenever that’s possible, and in my experience it has always been possible. I‘ve had doctors mention that sedatives--not painkillers--were available for various procedures, but that the decision to use them was up to me, and I’ve always declined.

The reason for this is that I find medicine fascinating and I enjoy learning, especially as it concerns my own body. Except for the fog of rage that shrouded the incident of November 13, I was always able to come away from every treatment and every procedure having learned something. Earlier in the book in chapter 10, pages 75 – 76, I explained my outlook about such things this way:

My relationship with Dr. Somers’ superb team of radiation nurses and therapists at the Center was as surprising to me as it was strong. Considering the kind of person that I had been most of my adult life, not misanthropic exactly but deeply cynical and distrusting in every conceivable sense, I found that my response to this entire group of professionals was amazingly out of character.

I had opened myself to virtually unlimited bonding with these very special people, putting my life in their hands without reservation. My commitment to them was total.

My relationship with Dr. Somers, on the other hand, was vastly more complex from the get-go. I was told from the moment of my diagnosis that I had a responsibility to learn about prostate cancer and ultimately to choose my own treatment regimen in consultation with my doctors.

I was told also that as a cancer patient I had a key role to play in the ongoing decisions relating to my treatment. To me this implied a vigorous give and take throughout the process and enlisted a certain amount of enthusiasm on my part.

Although I had initially taken those early exhortations to be as much pep-talk rhetoric as serious instruction, their effect on me--to the occasional chagrin of my caregivers--was to energize both my curiosity and my involvement. I wanted to take in absolutely everything. I wanted to miss nothing.

The adventure that I had embarked upon in my fight against cancer was a terrifying one to be sure, but it was an adventure nonetheless. I fully intended to relish every moment of it.

art stump

Anonymous said...

To Art Stump,
I thought women were the only people unlucky enough to face stirrups. Although in Australia, they are only used in surgery and during procedures.
If you don't mind me asking...Why did you need to be in stirrups?
I think this position is the most difficult of all...I've been through it once and there was only one female doctor in the room, but it was still horrible.
Talk about extreme exposure and feeling vulnerable and embarrassed.
A sea of hands guiding you onto the table makes me cringe - definitely don't want an audience for those sorts of procedures.
Hope you're fit and well now...
annie

artstump said...

To Annie from 10-17-09…

Thank you, Annie, for your good wishes from Down Under. I am fit and well now and able to enjoy the more predictable failings of an aging body---arthritis and the like.

Why the stirrups?

Under the effects of hormone and radiation therapies the size of the prostate was expected to diminish. In my case the hoped-for shrinkage would allow the ensuing brachytherapy procedure to proceed on schedule. The purpose of the VMS, then, was to measure with some degree of standardization the current mass of the prostate.

With the subject lying flat on his back, the structures in the pelvic bowl assume a predictable orientation under the effect of gravity. The prostate at that point rests directly above the rectum and is ideally positioned for an ultrasound probe within the rectum to capture clear images.

Why these stirrups?

I’d seen stirrups before but these were definitely the super-heavy-duty variety. My impression from that was that different patients probably had different levels of composure in response to the ultrasound probe, and the use of such stirrups and their hefty restraining straps assured that the probe and its tethered electronics would not become a problem in the event a patient was less than tranquil.

In my own mind I’d already accepted the necessity of discomfort and exposure during the VMS---and still the procedure itself remained a source of fascination. Consequently I was not a problem patient, as the following excerpt (chapter 18, page 122) illustrates:

The mapping procedure began with Dr. Somers applying a generous amount of numbing lubricant jelly, something I really appreciated. Following that, the insertion of the sizable ultrasound probe into my rectum was essentially uneventful. Indeed all three of my attendants seemed genuinely surprised that there was no flailing or thrashing about on my part and freely exchanged comments to that effect….

Perhaps most important, I was expecting to be subjected to the size of hardware and the kind of aggressive manipulation that I had experienced earlier with prostate biopsies in my urologist's office. By comparison I was finding this procedure a pale imitation---more at the level of distasteful.

So as far as privacy and embarrassment issues go, they were not overriding factors in the VMS. I had earlier experienced a major privacy violation in the November 13th incident, and the devastating impact of that experience was still with me. In struggling to make sense of that extremely difficult experience, however, I came to understand that it was not the privacy violation per se that was so painful for me. Rather it was the betrayal of my deepest trust. In that incident I’d been used by the self-serving programs and policies of a hospital bent on putting its own interest ahead of that of its patients.

If I had been sent to a clinic to receive a VMS as a one-time procedure from strangers, my reaction might have been different. But my cancer team and I had already been through a lot---17 radiation treatments to date---and my bonding with them was extraordinary. Cancer was the terror in my life, and these people were doing everything in their power to help me defeat that terror. I felt that I was in very good hands the day of my VMS, and I’m confident in saying that that feeling was not the result of Valium.

art stump

MER said...

I appreciate your comments, Art. You give this subject the nuance, context and reality it needs. Too often it's oversimplified.

artstump said...

To MER from October 18…

Thank you for the kind comments. I confess that my natural inclination early on in my confrontation with the hospital was to simplify the daylights every side of some pretty complex issues. Emotionally I just wanted to bash somebody and, practically speaking, words were my only avenue.

The first few times that I discussed with my attorney some of the communications that I was about to send to the hospital, he matter-of-factly suggested one change after another: drop this, soften that, don’t get into this yet, etc. He became my personal editor, not changing what I was trying to say, but shaping how I was going about saying it. And when I read over his edited version, I was truly impressed. It suddenly seemed so very much stronger.

When I took the time to think about what it was that he had done, I realized that he had systematically removed the torrent of sarcasm and vitriol that had just naturally come flowing out of my keyboard. Clearly there is a time and place for such charged emotions, but in my case they were simply getting in the way of the issue-based case that I was trying to present.

I believe that my attorney’s editing assistance was one of the instances in my life where I came away from an encounter with another person having learned something important, hopefully something that will stay with me from here on.

Thank you again.

art stump

Joel Sherman said...

As far as I can tell this comment of MER didn't get published:

MER has left a new comment on your post "Cancer Therapy & Privacy Angels Part 2":

Art:

Note that what we so often read on some of these blogs is the unedited, emotional reactions filled with vitriol and sarcasm. In many ways, this kind of response is counterproductive. But what some medical professionals don't seem to understand is that, these writers feel they have been treated so unprofessionally that their emotions are stuck at the gut level. This is what true humiliation does to people. It can either destroy them or, to prevent that, they fight back with an emotional attack like the kinds we read.
That's why your account is so rare. You've taken several steps back. You describe the initial and follow up emotion, but you're also able to recover from it and move forward productively. Others just can't move forward. They're stuck on the initial emotion.
Caregivers need realize the damage that these violations can cause people. I don't think many of them realize this, or perhaps they don't want to face it. On the one end, they have the power to save lives; on the other hand, they can destroy lives, too. It's a tremendous responsibility.

artstump said...

To MER from October 19…

MER--- Excellent observations. I agree 100%. Emotional trauma has far-reaching impacts in the lives of it victims, often leaving them with few, if any, apparent options. Perhaps the most insidious of these impacts is the debilitating feeling of helplessness that one is left with in the aftermath of personal violation. Venting one’s outrage in the blogosphere, it seems to me, has an important place in the process of recovering from an incident; it’s a bold first step. I would encourage those who can, however, to look upon that venting as a first step only and to resolve that there will be other steps to follow.

I’ve advocated in this blog that patients should take every opportunity to raise the voice of objection in the face of mistreatment. I believe that the act of raising objection is an important pathway to healing that awful sense of helplessness. That voice can be raised quietly in a private comment directed to a physician, formally in a letter to the head of a healthcare institution, or openly in a hostile and very public criticism of the policies and practices of a healthcare institution.

Each of us has a style of communicating that is best suited for the kind of person that we are, but the act of raising one’s voice in objection is itself one of the best antidotes to the feeling of helplessness. It doesn’t mean that you’re going to be successful in winning over the opposition and that everything will be made right again, but it does mean that you’ve reminded the world around you --- yourself in particular --- that you are more than the contents of a manila folder in a departmental outbox. You are a real person. You deserve better. And now you demand better from those who provide you with healthcare.

That’s a message you can live with, and in the end it’s a message that healthcare providers must live with as well.

art stump

Joel Sherman said...

Great posts Art & MER.
If I had to sum up the 'message' of this blog it would be to encourage responses to violations by instituting complaints, hopefully constructive ones.
But I couldn't have said it as well as Art does. He has gone through the trauma and responded with such force that you can be sure that Memorial Hospital will have changed their procedures so that it can't happen again.
Venting on blogs does help, but the best response is directly to the institution involved and the agencies that oversee them. Not everyone can write a book, but everyone can respond to a traumatic violation with targeted complaints.

Molly said...

I think venting is helpful and
when you see others feel the same way, it gives you support and the strength to take things further.
It also makes you more aware in the future.
I think many people feel uncomfortable complaining about this sort of thing and some people are unsympathetic and think you're being precious.
My sister refused to see the male doctor covering for her female GP. She found a lump in her breast and decided to wait for her GP to return from her trip overseas.
Our mother was totally unsupportive and a huge argument followed...
I think some older women had to cope with very embarrassing situations because they didn't have the choice of a female doctor.
We feel differently...I could understand why my sister didn't want a man handling her breasts.

Our father, who is 11 years older than Mum, didn't say a word and offered to drive her over to see a female GP working near his office.
It upset my sister that our mother was judgemental and unsupportive. Almost like she had to accept male doctors and so should we...
You don't have to do that anymore and I know my Aunt has been seeing a female doctor since she was a girl...she travelled miles initially to find a female doctor. There were only 6 working in our State at that time. Now female doctors outnumber the males.
Why should you put yourself through more than necessary?
This is still an issue that many people still fob off as someone just being silly or immature.
They are the ones that need to change their thinking.
I don't care what they think...I decide who does what to my body.

MER said...

Molly:

I believe you see this same attitude with men who have been surprised by female intimate care they weren't expecting. They were not willing to speak up and ask for another caregiver. They "bit the bullet" and got through it. I know of at least one man who continues to let this happen to him although he is not only embarrassed but also humiliated. He gets very angry with men who claim same gender care is best for them. He doesn't like that. It's as if, I had to go through it so you do too. He feels he's more a a "man" because he got through it. He resents men who won't put up with it. I know men who tell their embarrassing stories as a joke. They laugh about it, but that laugh is a defense mechanism to help them cope. When I've confront such men with this explanation, they admit it. Why would men or women care one way or the other how other people feel about the gender of their caregiver -- unless of course they resent it because they don't have the strength to stand up for themselves.

Molly said...

MER,
I'm sure you're right.
I've noticed some women seem to think they're more sophisticated and mature when they have a male doctor give them an intimate exam.
I know when my Aunt had her baby and went to a lot of trouble to get in and see a female obstetrician, the females in her circle were very angry and quite nasty.
They all said things like, "are you seeing a FEMALE doctor, Oh, how ridiculous, it makes no difference"...
I felt like saying...
If it makes no difference, why do they feel compelled to say anything and why get angry?
Perhaps, they're sorry they didn't have a female obstetrician.

I know my Aunt was made to feel silly and immature...she didn't care, she really liked her doctor.
Funny thing, my mother was determined to find something wrong with this doctor.
She was a great doctor and Mum actually met her at the hospital when she was visiting our Aunt.
She had to admit she was an impressive doctor.
I think you're right, people react aggressively because they resent that your experience will be less embarrassing, more comfortable.

I think my mother and some of her friends needed to reassure themselves that the mature thing was to put on a brave face and make like it didn't matter, they didn't care...they had no modesty when it came to doctors because they're highly trained professionals after all and see it all on a daily basis.
Maybe that's why they think it impertinent to look at it from the other perspective...how YOU feel about it?
All of their reasoning is how you cope with the embarrassment. (he's a professional, does it all day etc)

MER said...

This seems to be the only thread where this fits

I wonder if studies like this have contributed to the way nurses and doctors are trained and the way some of them perceive patient stress and anxiety. This is from the Journal of Advanced Nursing, Vol. 14, Issue 7, pp. 576 – 581. Here’s the abstract:

Nurses' perception of stress in preoperative surgical patients
F C Biley BileyBNurs RMN SRN FETCert 1

“It is generally recognized that the stress of hospitabzation and hospital treatment can impede the recovery of patients and in some cases cause potentially life-threatening physiological changes Previous studies have indicated that nurses do not accurately perceive worry, anxiety and stress in patients In order to assess how accurately nurses perceive worry, anxiety and stress in their patients, questionnaires were designed and distributed to a group of preoperahve patients and nursing staff from general surgical wards, in order to discover how closely these two groups considered various situations and events as causing worry in preoperahve patients The results showed that whilst there was a considerable level of agreement between the two groups for the rank order of the 26 items in the questionnaire, nursing staff consistently assessed patients as worrying considerably more than the patients actually reported themselves The nurses in the study were therefore over-estimating the degree of worry, anxiety and stress in their patients”

I would like to see the questions asked patients, and further details of the study. But, if this is the medical perception of patient stress and anxiety (I question how honest the patients may be in answering.) – I can see why issues like modesty may be overlooked, especially in teaching. I’ve seen a few other studies like this, too. Although the studies could be correct, it seems a self-serving conclusion, with the message: “Don’t worry too much about patient stress and worry. You’re probably worried more than the patient.” But I think studies like this need to be done with specific questions about patient modesty.

Source; http://www3.interscience.wiley.com/journal/119442634/abstract?CRETRY=1&SRETRY=0

Joel Sherman said...

MER, for some reason the link you gave doesn't work so I reformatted it to function. To my surprise it's the same as you quoted complete with spelling errors. Doesn't say much for the expertise of the journal. But I'll try to get the full article. The questionnaires I've seen ask general questions about how satisfied patients are with their treatment but tend to avoid more specific questions.

artstump said...

To Joel from Oct 23...

I too found the original link not working. Thanks for the revision. It would be interesting to see what the 26 items queried consist of. The spelling of "recognized" for a UK study also struck me as odd.

art stump

MER said...

As an addition to that abstract, Sunday's (Oct. 25) issue of Parade, contains an article "Can Stress Make You Sick?" by Dr. Ranit Mishori. I realize this isn't a scholarly article, but it's worth reading. Granted, there's a difference between short-term and ongoing stress that the article points out. But I can't help wondering how even short-term stress, like that experienced by Art, can affect long-term health, especially for patients with serious diseases like cancer or diabetes or heart disease. Are there studies out there? I would doubt that anyone has done a study of how the stress of severe modesty violations can affect health and patient well-being. Although our poster Marjorie Starr seems sometimes extreme, she makes some extremely good points about the stress that these modesty violations cause.
Anyone know of any more stress studies out there -- studies that track patient stress during hospitalization and how it affects their health?

Anonymous said...

Hi,

I thought I would ad something of my story in relation to cancer treatment and modesty. (My story goes to other issues such as "informed consent", but I will try and give mention to those in passing and confine my comments to the modesty issues).

I was diagnosed with rectal cancer in mid 2006. The cancer was quite large, though after a CT scan seemed locally confined with some suggestion that 2 local nodes were also suspicious. The protocol then and now, (I am in Australia, but I gather the same is in the US) is before surgery you undergo a combined radiotherapy/chemo treatment, in my case it was over 5.5 weeks.

Given that I was to have pelvic radiotherapy I was concerned about 2 specific things: the chances of sexual dysfunction and the extent of nudity in the actual treatment process.

In my case I raised both these issues with the female doctor who did the initial treatment. I will confine myself to the modesty issues in this section. I specifically asked her in treatment how naked would I be. She couldn't say from the waist down or similar, she simply mentioned with her hand to give the idea of how undressed I would be. I then protested at this and started to ask questions, talked about my modesty etc and she said that I could leave my underwear on. She repeated this to the coordinator when he joined us. The point of this is I found out later from a radiotherapy tech that she usually keeps underwear on all men any way. Why couldn't I have been told that? This same doctor then did a general physical examination and said she wanted to also do a rectal exam. I asked why (remembering by this time I had a CT a Colonoscopy and an MRI). She said she needed to verify this for herself. I said I was embarrassed by this as she was about to do it, and I got the "I have seen this all before comment". Again like many others I regret that I didn't follow up this comment. But the fact is you have been diagnosed with a life threatening cancer, you have so many things going on in your head it’s hard to be quick to respond articulately.

Subsequently in the pre-radiotherapy CT I talked to the nurse about my modesty concerns. She said to me that it was good to hear this from a male point of view as they often talked about women and breast radiation etc and how to maintain their dignity but not men. But guess what, as I was leaving the conversation, I got "but of course this is nothing that we have not seen many times". As if that was somehow relevant to how I felt! Again I didn't say any thing, but I still wish I did.

I will leave it there but I have more to tell especially in relation to some aspects of the surgery and when I did take some action. (If readers are interested that is)

Chris

MER said...

Interesting observations, Chris. From what I've learned, nurses especially (doctors, too) are taught to deal with many of these intimate procedures "matter of factly" as if they do it every day - regardless of how they personally feel. The theory is that this makes the patient feel at ease. Now, many do these procedures every day but that doesn't mean that they all feel comfortable doing it. I used to think that the lines "We do this all the time. We're all professionals. We've see all this before" -- I used to think this was always designed as a conversation stopper -- a way to end the conversation and get on with the task. That is the case sometimes. But now I believe that, based upon what they're taught, they believe that these lines put the patient at east. It's kind of a magic trick. Say these words and the patient will think, Oh, since they do this all the time, it's just fine with me. Some caregivers really think that's how patients will think.
Now I'm not saying that these lines never put any patients at ease. But I challenge this contention and challenge anyone to show me the studies that indicate that they do put most patients ease.
Also, notice how uncomfortable your female doctors was at even using words to discuss male modesty. She had to use hand motions. Patients need to understand that doctors and nurses are as human as we are and they have problems/hangups/issues with sexuality. I believe a significant number of doctor and nurses have a difficult time discussing these issues with patients. Many of them have their own modesty issues when they end up in the hospital.
But the important point you make is to speak up. And when you did speak up you were listened to and accommodated to some extent. As you suggested, if you had challenged their "We do this all the time" statements, you might have gained more ground -- or at least made them realize that those kinds of statements don't really help with many patients.
Let's hear more of your story.

Anonymous said...

Medical people always seem to do that.
Instead of addressing your concerns about modesty, they talk about their point of view.
Chris has given some examples of that, "I've seen it all before".
I don't know what that has to do with anything.
Thanks for sharing your story, Chris. I hope all goes well.
It makes a huge difference when our modesty and dignity is respected at these difficult times.
My Uncle needed to have a contrast study of his heart and was almost naked for the procedure. He said the well placed facewasher made all the difference to his comfort levels.
Such a simple thing that made a HUGE difference.

I know a male radiotherapist...he gives cancer patients their radiation treatment.
We were talking about modesty recently. I was shocked to hear that patients are required to lie totally naked while they're being initially assessed & measured etc.

He said two therapists were present for this session.
I'd be mortified if I had to lie there stark naked and said so...
He said, "most of our patients don't have nice bodies".
I was puzzled by this statement.
What does that have to do with feelings of embarrassment?
Are only attractive, well-toned and young patients allowed to be embarrassed?
Is he saying he's not interested in looking at their ugly bodies, so they needn't feel uncomfortable? That patients are kidding themselves...

The fact he made that comment suggests to me he certainly judges people's bodies. Some people feel even more embarrassed as their bodies age or if they have less than perfect bodies.
Some of us will always be modest people...whether we're elderly, middle aged, young, fit, overweight, slim.
There's no formula.
He became embarrassed and defensive when I asked him what he meant by that...
He realized he'd said the wrong thing.
I'm still not sure what he meant though....
TY

MER said...

TY -- You bring up an important point. When challenged, the doctor you mention became embarrassed himself because he knew he couldn't defend his prejudiced, self-centered opinions. Doctors like that are rarely challenged when they voice opinions like that. When it happens they're not expecting it and have no argument in their favor. They begin to get the picture.
Again, we're shown that we need to openly, vocally, challenge this wrong thinking. If the doctors feel embarrassed, so be it. That may be the beginning of some self-knowledge.
You also say: "I was shocked to hear that patients are required to lie totally naked while they're being initially assessed & measured etc."
I think most patients would be surprised to learn what's really "required" and what's just habit, custom or just easier for the caregiver. If that particular "requirement" was challenged, I would be you money that it would not remain a "requirement" at least in that case. Patients need to question these kinds of unnecessary exposure.

artstump said...

About the digital rectal exam (DRE)…

I’ve seen this topic referenced in various discussions and thought it might be helpful to offer an observation about this particular unpleasantness---speaking from the perspective of a patient who has received many such exams. In my case, of course, the focus of the DRE was the prostate gland.

CTs and colonoscopies have roles to play, but they don’t see everything. CT scans are x-rays and not all that great at soft tissue examination. Colonoscopies are visual inspections with obvious limitations. Both of these exams are typically done by specialists who often provide findings (films, electronic images and such) to other specialists who read and evaluate them, in the end furnishing the doctor with a report. Very arm’s length. The doctor treating the patient, however, can use a DRE to palpate (touch and feel) tissues directly. This direct palpation serves 2 main purposes:

1. To examine for tissue irregularities or confirm another examination’s findings of irregularities, and
2. To orient the doctor with a hands-on appreciation of the patient’s tissue makeup, allowing the doctor to monitor, detect, and evaluate tissue changes over time. These DREs allow the doctor to track treatment progress or lack of progress over time without subjecting the patient to the harmful effects of repeated radiological exams or the potential inherent risks of repeated colonoscopies.

My most recent prostate checkup was preceded by a PSA test and capped off with a DRE. The exam took just a couple of seconds because my doctor knew exactly what to feel for. His comment with emphasis---for my benefit I’m sure---was, “Nice and flat, just like I left it!”

It would be interesting to have an experienced doctor comment from the other side of the procedure, both to evaluate or correct the accuracy of my own observations and to offer a doctor’s perspective.

art stump

Joel Sherman said...

To MER, stress is so hard to quantify that it's really difficult to know how big a role it plays. There are studies relating high stress to poor outcomes in nearly everything. But it's so hard to determine what came first and what the primary factors were:
To Chris: The comment 'we've seen it all before' and similar comments are a common defense to use on people who speak up about modesty violations. Most providers don't say it maliciously; they honestly think it's comforting or they're trying to avoid requests such as same gender care which they either can't comply with or don't want to for various reasons. Everyone needs a retort for it, such as 'it's not your modesty that I'm concerned about.' Men in particular need to challenge it as many think guys just need to get over it whereas they wouldn't think that about women. MER commented somewhere concerning a nurse's statement that she felt sorry for embarrassing a boy she was treating. It never occurred to her to stop and ask what she could do to minimize the kids embarrassment including getting a male to do what was needed. My thread on 'we're all professionals' touches on some of these issues. Chris, please post more of your pertinent experiences.
Ty has it right that providers tend to think that sick and unattractive patients won't be embarrassed because no one could think of them sexually. It doesn't help patients though if they're well enough to be concerned about their modesty.

Anonymous said...

Hi again from Chris

Some more of my cancer treatment experiences.

Students

My first encounter was with a student who was training whilst I was having radiotherapy. She was introduced to me at the commencement of the session. I said that I wasn’t asked permission before hand. The response from the radiotherapist to the student was: “I am sure he was joking” To my shame I just sort of agreed to that comment, though I wasn’t. But I learnt from that. For all future treatments I insisted that I required prior approval before any students or “observers” were present. This included 2 sets of surgery and both times this was followed.(In the cases of surgery I put this on my consent form also) I gave the students my approval and as I had been researching my treatment a fair bit, I gave them what was a fairly comprehensive briefing, which I hope was assistance in their education.

In Hospital

After the chemo /radiotherapy some 6 weeks later and following some tests that confirmed that the cancer had reduced in size substantially, I had surgery. (For those interested this was an open ultra low anterior resection).

This was obviously a major surgery and I knew during surgery at times, I would be fully exposed. For example, I would have extensive lower abdomen prep, and I would have a urinary catheter inserted. Whilst I was anxious about this, frankly I was more concerned at the time about the operation itself.(In particular I had been having a battle with one of the surgeons who wanted to do an RP Resection which entails removal of the anal area also and the creation of a permanent stoma. But that is for the informed consent page I think)

Post surgery I had mostly female nurses and as a teaching hospital a number of student nurses. On the students I gave up seeking prior permission for their presence as they were actually involved all the time I was in hospital. (I could have put in a “blanket” no students I suppose but I didn’t do that)

Exposure was part of the treatment. Examples included: removal by a nurse of my urinary catheter (female and no choice as to gender), insertion of another catheter as I couldn’t void by a female doctor and then subsequent removal and checking of my bladder by ultrasound to checking urine retention. (After the first time of the ultrasound I covered up the lower part and just got them to scan the lower abdomen, which was fine. The nurses didn’t initiate that though). Finally my first shower post surgery I had a student nurse assist me to address, (you can’t imagine how many leads etc I was hooked up to!). But when I worked out after the first time I could do this without assistance I declined any further help when offered.

So I guess all the above was pretty standard. What did I learn in relation to modesty. Really gender choice was not an option in hospital, if I wanted no students involved I needed to work that out beforehand and frankly my anxiety about the treatment itself was of greater concern and unless the nurses/doctors raised it, I usually didn’t take any action.

My final piece next time will be about a real breach that effected I thought a number of people which I took action and got some changes.

Chris

PS. For those that asked, I am now 3 years post surgery and I am on regular check ups with no sign of reoccurrence.

artstump said...

To Chris from October 27…

Chris, thank you for sharing your experience. I hear in your account how difficult it is from a patient’s perspective to state terms that are acceptable to you for your treatment, and having done that, how much more difficult it is, if not impossible, to monitor and enforce those terms. And on top of all of that is your overriding concern about the gravity of your situation. That’s a lot of load for a patient fighting for his life.

And yet behind that busy stage of emotions I hear an appreciation and willingness from someone who recognizes that people in the medical profession have to learn and that you wouldn’t mind doing your part. At the same time, and maybe I’m reading more into your comments than intended, you don’t appreciate being forced to be anybody’s guinea pig. And there’s the rub.

Sometimes hospital arrogance in presuming upon their most helpless patients borders on predatory behavior. When tradeoffs for the hospital come down to quantifiable costs and strained efficiencies, the patient can easily be seen by those on the corporate side as the point of least resistance. The patient is, after all, needy and desperate and so very available; it takes a conscientious, well-planned and ongoing set of policies on an institution’s part to assure that patient dignity and self-worth are not sacrificed to the corporate bottom line.

Glad to see you are faring well, Chris. Looking forward to your next installment.

art stump

MER said...

Interesting story, Chris. About your comment that you were not asked permission for students to observe: "I said that I wasn’t asked permission before hand. The response from the radiotherapist to the student was: “I am sure he was joking.”

This is a disturbing response, that is, that doctors should have to ask patients permission to bring in student observers is so beyond comprehension that when a patient asks about such a courtesy it's a joke? Amazing.

I hope patients are reading this closely, and some doctors and nurses, too. It's so important for patients who haven't had these experiences to experience them second hand through patients like you. We need to learn to speak up. But what should one say? How about something like this --

"Doctor -- I'm almost shaking as a speak. I'm very nervous. I'm going to do you and your assistants a real favor. I'm going to do something that most of your patients feel too frightened to do. Most of your patients in my conditions are so worried, so concerned about their condition, that they are afraid talk to you about their personal feelings about their modesty. We as patients want to talk about our embarrassment and how your apparent lack of concern for it causes us stress and humiliation. I want to know the details of what's going to happen to me and who's going to do what, and I want to talk with you about what we're going to do to preserve my dignity and modesty. I say we because I'm a part of the decision making process. Now, I don't mean to be confrontational. I realize you've probably not had a patient talk to like this before. But I think it's important that you realize that it's not that patients don't feel the way I do. It's that they're afraid that by speaking up they'll alienate you and your staff and the result will be substandard care. I'm not saying that would happen; I'm just saying that's how many patients feel. Let's talk about this and figure out how you can do what you need to do and still preserve my dignity and modesty."

An advocacy group for patient modesty could actually print out a statement like that so the patient can hand it to caregivers.

Anonymous said...

Hi MER,

Thanks for your comments. I agree that your statement would have been a good idea and I so wish that I had the "ability" at the time to say something like that. The thing about these encounters is that you remember them after; not during the moment. (It is also the case for many of us that our minds work in this way. That is we think of a response sometime later not at the time)

I did learn something though and I will post as I promised an encounter wher I did do something.

Chris

Anonymous said...

Part 1
As promised I want to outline an issue that happened to me in hospital and my response. Below is a copy of an email I sent to the patient representative in the hospital where I was having my temporary stoma reversed. (I have only slightly altered this email to remove some names).

"Dear XXX,

I wish to formally bring to your attention the lack of privacy and dignity accorded to patients in the "new" Surgery and Endoscopy Centre (level 2 Austin Tower). The observations from my perspective were:

1. I attended this Centre on 21 August for an illestomy reversal surgery.

2. After admission I was escorted into the surgery "waiting area" to to change into hospital gown and (see below) and then told to sit at the designated chair.

3. The area is an an open area, apart from a wall in the centre. Each patient is allocated a casual chair (by some numbering system). Male and female patients are all in the same area. Chairs are arranged around the walls. Each chair is very close to the next chair. There is no capacity for patient privacy, even curtains.

4. You are asked to change into the open backed surgery gown, with only very flimsy paper underpants. You then walk to you seat from the changing area in full view of all. (Some patients were given 2 gowns, 1 put on from the front and the other the opposite way. This was not offered to me or most other patients that I saw.)

5. At your seat, in full view and hearing of all patients, you are then given the presurgery verbal questionnaire, interview with the surgeon, anaesthetist as appropriate etc. (And in my case a final year medical student also). No offer was made for these interviews to be made in a private room or other alternative.

6. When you are scheduled for surgery you are the taken across the room in your open backed gown to the trolley to go to surgery.(In my case after expressing concern one of the anaesthetist nurses held a sheet across my back as i walked across to the trolley, though I doubt this common practice.)

I am not sure that you have had a look at this facility when patients are going into surgery, if not I urge you to do so. I cannot believe that this area in any way satisfies your commitment to patient privacy and dignity.

I would appreciate a reply to this email. I can be contacted via this email or mobile
Chris XX "

As there is limited space allowed for each blog I will post the responses in the next parts.

Chris

Anonymous said...

Part 2 (from Chris)

Below is the response I received from my email.
“Dear Chris
Further to my note of acknowledgement, the concerns raised in your letter have now been discussed with XXXX, Director, Anaesthetic, Peri-operative and Intensive Care Clinical Service Unit, and also with senior managers working in the new Day Surgery and Endoscopy Centre.

Mr. XXX has asked me to thank you for taking the time and trouble to identify various issues of concern relating to the need to respect the privacy and dignity of patients admitted to this area. He has also asked me to assure you that, as part of the ongoing monitoring and review of the area, these particular issues had also been raised by staff members, and he acknowledges that there is need for improvement. As a result, a working party was convened specifically to look at each of these issues in depth and to seek practical solutions, and a meeting of this group had been held prior to receiving your letter. Your comments will be included in future discussions.

Within the hospital, there is clear recognition of the importance of ensuring that patient privacy is maintained, and, in addition to the working party convened by Mr. XXX, there is a hospital Privacy Committee with a broad range of membership, which oversees all aspects of privacy/confidentiality for patients within the hospital. All complaints relating to privacy are reviewed by this Committee.

We very much appreciate the feedback you have provided, and can assure you that considerable effort is being put into achieving improvement. In the interim, staff members working in the area have been reminded of the importance of ensuring that processes are in place to provide optimum patient privacy.

If you would like to discuss this further, please contact me on XXX.

Yours sincerely,

XXXX
Patient Representative”
Final outcome in part 3

Anonymous said...

Part 3 (from Chris)

A few more emails ensured and in February the next year (my original letter was sent in October) I received a reply. This letter was sent not by email but mailed to my home address.(I have it somewhere but I can remember the contents).
In summary the, again thanked me for raising the issue and they had agreed to:
- Provide dressing gowns for all patients
-Have male and female patients in separate areas
-Put curtains around each chair
-Build some private interview rooms where patients could be interviewed.

I think in this case whilst it took time, I did acheive something not only for myself but other patients.

Chris

MER said...

Chris -- I've experienced the same feeling in medical situations, although of a less critical situation than yours. So I can only imagine how a seriously ill patient must feel.
That's why I suggested having a statement like that printed out. If would could educate patients beforehand, provide them with handouts or pamphlets like the one I suggested, convince to at least bring them to the hospital with them. Whether they actually use them -- they could decide later.
Assume you had been informed of modesty issues before you entered the hospital. Assume you had a pamphlet that stated something like I provided. Assume you couldn't verbally have articulated your feelings at the time. Assume you had the pamphlet in your hand. Do you think you might have been able to hand it to the doctor or one of the nurses?

Anonymous said...

MER,

The reality is that when you are having extensive treatment you have interaction with a large number of medical staff in many different situations. The practicality or the utility of always having your "statement" to hand out on all occasions I doubt.
The answer must primarily be in policies and practical procedures ,along with education of the medical and ancilary staff themselves.

Chris

Anonymous said...

It is hard to stay in control in the hospital system.
Recently I was required to have a pelvic ultrasound.
I didn't want a male and said so when I arrived.
I was told a male was the only one on duty.
I asked about exposure...and then asked why it couldn't be done through my abdomen, and not internally.
They do the less invasive test for virgins or women who have not had pelvic exams.
If the other way is available and works well enough in that group of women, then the option should be offered to everyone.
I had the less invasive option with the male doctor.
It worked fine.
My doctor said sometimes the detail is unclear, other times it's fine.
I wouldn't agree to anything internal unless I was convinced there was no other way and then I'd want a female doctor or nurse.
I can understand how being a patient in a hopsital is totally different. You'd be on guard the whole time and sometimes it is hard to stand up for yourself when you're one person against the system.
I think patients should also give their doctors feedback. I complained to my Dr about the male doctor being on the only person on duty. She'd had a lot of upset patients.
Some put up with the male, others refused and didn't have the test.
She said another diagnostic centre had opened and she'd be using them in future, they always had a male and female working in the centre accommodating both sexes.
She said the days of pushing doctors onto patients was over.
She didn't want her patients upset or inconvenienced because they were insensitive, behind the times or short staffed.
She talked about both sexes, not just women.
Mellie

Joel Sherman said...

I agree with you Chris. MER's statement is fine but it would have to be given to too many people and is too long and convoluted. You'd have to make it into a poster to mount over your bed. Of course they might think you were a little eccentric if you did that.
As we've said before and Mellie reinforced, there is a world of difference between outpatient care with scheduled tests versus acute illness with inpatient surgery and procedures. You'd have to be a very composed and experienced patient to stay in control in the latter instance.

MER said...

So -- this has been an education. Joel and Chris, what you say makes sense. How about this -- We need to make sure more hospitals have hospitalists, that is, someone who follows the patient and helps coordinate care. Some one, at least one person in the hospital, should try to have the complete picture and know how all the parts are working together. What would you say to the hospitalist knowing the patient's wishes -- a letter like that to this professional? Otherwise, it would have to be the patient's personal advocate. But, as the patient goes through the system, someone should be in charge of trying to see how all the varied care works together. Some hospitals do better with communication than others -- but it's extremely difficult for all these professionals to get together for a staff meeting about the patient. Your thoughts?

Anonymous said...

Hi MER,

I am not sure about your suggestion. I am in Australia, so I don't know the situation in the US, but when it comes to resource implications, I suspect that there would be pretty much consistent resistance across any system to what you propose.
What you are proposing (if I understand you correctly) is some form of managed care or perhaps a case mangement approach. I know that in some cases this applies for example for community care or welfare agencies, but I remain unconvinced as to how useful it would be in a large hospital.
I favour utilising the patient file syatem which in my case has been incorportaed (at least in part) into the hospitals IT system. You could have a series of codes against a patient which records their particular wishes and training to ensure that all staff are aware of this and look it up. (You could make it mandatory that those codes are recoded for all patients for example). In addition, a brief print of that goes in to the hard copy patient record that pretty much goes with the patient.

Of course this doesn't really go to the issue of staff training and awareness that that needs to go hand in hand with any system.

Recording of complaints and action taken should also be part of all hospitals QA system. Reports on these should go to the CEO and perhaps also the hospital Board.

Some random thoughts

Chris

MER said...

What I'm proposing, Chris, is already part of most good health care anywhere. When a patient is in a hospital being treated by sometimes a dozen or more professionals, someone needs to coordinate that care. Someone needs to at least attempt to get a handle on who's doing what and whether the care is working as a whole. Often it's the nurses who look out for the patient in this regard. But there is a relative new job description, that of the hospitalist who does this. What I'm proposing is just basic medicine and where it's not being done the patient's life may be in danger regardless of how expertise all the individual professionals are. Complex treatment must be coordinated.
So, what I'm proposing, then, is that whoever is doing this for the patient be informed about the patient's preferences regarding intimate care. That just becomes part of the treatment plan.

artstump said...

Re Coordinated care…

It’s my impression that coordinated care for serious illness is a given in a hospital setting. Anything less would be dangerous. Aside from ER cases, you always have a prescribing physician and numerous specialists in related areas who perform specialized treatment of one sort or another at the order of the lead physician, or, as is the case at Goshen Cancer Center, at the order of a team of interdisciplinary doctors who fill the role of lead physician.

As I noted in My Angels Are Come, my lead physician initially was my urologist, but he “handed me off” to a radiation oncologist for the major portion of my treatment. He then resumed lead position following radiation therapy and would be the one who would coordinate further treatment, possibly of a completely different kind, should the cancer show again and require further therapy.

What all of this misses, I think, is the simple fact that matters of privacy and modesty are not really part of the treatment landscape. They are expected to be addressed in some fashion all along the way, but they are not part of anyone’s prescription. Keeping the patient alive is the focus.

As Chris noted, concerns about privacy and modesty and respect for the patient dignity must come into play at a systemic level. That means that hospital management must have given such matters a high enough priority that they have factored into policies and programs systemwide. Privacy and modesty issues must be valued highly enough to be among the givens.

art stump

Joel Sherman said...

I'm not sure quite how to respond to the recent discussion, but I think you all have a simplified or idealist view of medicine. Hospitalists in most private hospitals are physicians who are in charge of a patient's care when the patient's private physician doesn't choose to come to the hospital. They routinely know less about the patient than your own physician does. Some are great; some are not.
Your care may be very coordinated if you have a clear cut diagnosis and one physician or surgeon is in charge. Uncomplicated post operative patients are easy. But many patients have complications or multiple problems some of which may be hard to diagnose and treat. If you are seriously ill with multiple problems it takes a very knowledgeable and conscientious doctor to fully coordinate it. And yes, modesty is way down the list of priorities.

MER said...

Interesting discussion. So, what do we do? I've proposed some kind of letter or pamphlet. You've both given some good arguments against its usefulness. As I've claimed in past posts -- both of your are strongly suggesting the problem and thus the answer is systemic. That strives to solve the problem on macro level. What do we do on the micro level -- that is, how do patients and patient advocates work to see this problem faced and solve?
I agree that when we're dealing with complex symptoms and complicated disease, modesty becomes a much lesser issue. But, there is a line to be crossed even in those situations. It's one thing for modesty to be consciously put lower on a priority list. It's another thing to just neglect modesty all together. The patient or the family or the advocate notice when that line has been crossed, and when it's crossed, although nothing is said at the time by the patient, the memory negative memory remains.
I suppose I'm saying that we can talk all we want about modesty being less important when a person is really sick because saving the patients life is a priority. That's a sensible point of view But unless modesty as a value is embedded in a hospital's culture, it's easy to slip down that slope when someone is seriously ill and forget about it all together.
Just some thoughts.

Joel Sherman said...

MER, I was just telling it as it is. Modesty is a low priority for providers taking care of very sick patients. The question is how to increase its importance under all conditions.
I see only 2 pathways, both of which are necessary. One, there needs to be more patients and families willing to speak up and complain. The issue stays under the radar for most physicians. More need to be aware of the percentage of people who really do care, and I'm convinced that a substantial percentage of people do.
Second, a concerted campaign is needed such as talked about here by alan, swf, and jimmy to send out questionnaires to hospitals and pamphlets to patients to raise their awareness, and put pressure on them to put more procedures in place to protect patients. A good start would be an admission form which routinely asked their preferences for receiving care, not only gender issues, but exposure to optional observers such as students and others.

swf said...

Advocates:
I have the primary logo ideas posted on "MIAB" and working on the scan thing on my computer to post the actual product. Will post this on DR. B. and Organize if I can't catch you here....

artstump said...

Re in-Hospital Care Coordination…

An earlier discussion addressed the coordination of patient care inside the hospital setting. I just came across an article in Hospital News exemplifies what can be done with patient care if the decision is made to consider it important enough to make the effort.

http://www.hospitalnews.com/modules/magazines/mag.asp?ID=3&IID=128&AID=1648

From the article: “Every 24 hours at Mississauga’s Trillium Health Centre, upwards of 1,500 information exchanges take place between two nurses at the patient’s bedside. One nurse is finishing a shift; the other has just started.”

The program is called the Transfer of Accountability (TOA) initiative, or safe patient handoff.

“The TOA process has the two nurses … stand on either side of the patient’s bed. Speaking in gentle, low voices, (in part to help protect patient privacy), they introduce themselves and ask permission to conduct a verbal report in the patient’s presence. Upon receiving consent, they proceed to discuss information such as vital signs, clinical condition, abnormal findings, pending diagnostics and treatment, and the plan of care. Included in the process are five safety checks listed beside each bed: alarms, armbands, allergies, intravenous, and environment (identifying potential safety risks in the room).”

Each patient is party to these change-of-shift reports, two to three times a day. In the process the patient gets to know each new nurse and witnesses the knowledge transfer. Reportedly “patients love it,” while nurses appreciate the opportunity to clarify information. Each exchange takes an average of three minutes.

Nothing terribly creative here, but rich with common sense. What it took was a hospital management that felt it was worth the time and effort. In this case the manager of Orthopaedics noted that when a nurse walks into a room alone and finds a patient in distress, it can be pretty scary. A brief handoff meeting can prevent that situation, empowering the oncoming nurse and enabling the one leaving to do so with greater peace of mind.

So, it can be done.

art stump

Joel Sherman said...

That's an interesting approach Art. It's not applicable to all patients if they were not fully conscious or too sick to pay attention. But even then, the patient's family might appreciate it. Hopefully all transactions don't take 3 minutes if they allow the patient to interject and ask questions as they should.
But I disagree with you on one point. I think the practice is indeed an innovative and creative approach which could certainly increase patient satisfaction. I note the hospital is in Toronto.

artstump said...

Letter of Complaint… Part 1

As we have advocated here again and again that patients suffering mistreatment in their medical care should address their complaint to a governing authority, I thought it might be helpful to post an example of one of my letters of complaint directed to a regulatory agency. At my attorney’s suggestion, I have removed personal names and certain dates. I have also divided the letter into two parts due to blog posting constraints. The first part is as follows:

Via Certified Mail

Indiana State Department of Health
2 North Meridian Street
Indianapolis, IN 46204

Re: Complaint Against Memorial Hospital of South Bend

Dear Sir or Madam:

As I find no form on your website for bringing a complaint to your attention, please accept this letter.

I wish to register a complaint against Memorial Hospital of South Bend. I experienced an incident during radiation therapy for prostate cancer in November 2003, an incident that was humiliating and degrading to me, and one that I believe violated my rights to medical privacy. I enclose a copy of my [date], letter to Mr. [officer’s name], the Hospital’s Corporate Compliance and Privacy Officer, which explains the details of my complaint.

My position from the outset with respect to the Hospital’s errant practice was that my ordeal during treatment was something that had already happened to me and could not be undone. However, my concern moving forward was to try to prevent the same kind of incident from happening again to other patients.

The Hospital’s response to my complaint was to essentially “regret” my discomfort and promise to remind the personnel who had committed the offense not to do that again. However, the policy structure that virtually assured that the incident would happen in the first place, as well as the ill-conceived programs and procedures themselves, were not addressed. They were apparently seen as necessary to the Hospital’s continuing worker recruitment efforts.

[ end of part 1 ]

artstump said...

Letter of Complaint… Part 2

[ part 2 ]

Following the Hospital’s disappointing response, I consulted an attorney in South Bend, [attorney’s name] of [firm’s name]. I felt this step was necessary to truly get the Hospital’s attention. Mr. [attorney’s name] spoke with the Hospital’s counsel and obtained for me a meeting with the Hospital’s Chief Operating Officer, Mr. [officer’s name], on [date].

In my discussion with Mr. [officer’s name], I explained my concerns and suggested what seemed to me to be an obvious and ready “fix” for the problem, essentially an “opt in” policy whereby new patients would state their preferences with respect to participating in non-therapeutic Hospital training and recruitment programs at the time of their check-in and before the overwhelmingly dependent relationships occasioned by therapy are established. Mr. [officer’s name] indicated his intention to present both my concerns and my suggestions to the two management groups at the Hospital that are responsible for the Hospital’s operating policies and programs. I understood that our exchange was heartfelt and amiable, and that Mr. [officer’s name] would keep me apprised of his progress.

However, despite a series of followup letters by me to Mr. [officer’s name], I have received no further response. Therefore, I am assuming that nothing has changed and that my concerns will not be addressed.

Your website states: If deficiencies are cited on a complaint survey, the hospital may be requested by the ISDH to complete a plan of correction on how and when they will correct each deficiency and who will be responsible to ensure the corrections are made and will not reoccur in the future.

That is exactly the kind of corrective movement that I have been trying to elicit from the Hospital, but with no success. Perhaps your office can determine whether the Hospital’s policies still permit seriously ill, dependent patients to be coercively solicited in the manner I was in order to satisfy the Hospital’s non-therapeutic promotional efforts. And if so, perhaps your office can encourage the Hospital to make substantive changes that will ensure that such practices will not occur in the future. Thank you for your assistance in this matter.

Sincerely,

[ end of letter ]

Every letter, of course will be different, and the appropriate governing agency or department to receive that letter will vary by state. You as the complainant should simply state your case as forthrightly as possible. Regulatory agencies, at least in the ideal, are there to assure that your medical care experience is a safe one. They need to know when things aren’t right, and you’re just the one to tell them.

art stump

MER said...

Art: Fine letter. Did you get a response? Where does this issue stand currently?

Joel Sherman said...

Thanks for reprinting the letter of formal complaint Art. Do you know if the state took any action? Did they require the hospital to file a corrective action with them? I would think that they should be willing to tell you that.
I take it you've never received anything in writing from the hospital. I would think that's the least you could get out of them. Possibly your lawyer could threaten to file a lawsuit if they don't (or maybe you already have). You might have trouble winning significant damages, but the threat of publicity might be enough to get them to agree to admitting fault and posting a corrective action.
Whether you can win any damages for privacy violations depends solely on your state's laws as no federal penalties apply for private action that I know of ( though there has been talk of changing it).
Has your book received any significant publicity in South Bend, especially as regards the privacy violation? That would be key to putting pressure on the hospital.
Please keep us updated on what is happening.

artstump said...

To MER and Joel from November 10-11….

Sorry for the delay, some urgent deadlines got in the way.

I received 2 responses from my letter to the Indiana State Department of Health. The text of the first response sans salutations is as follows:

- - - - - - - - - -

“Please be advised that on [date], the Division of Acute Care, Indiana State Department of Health (ISDH), received your complaint against MEMORIAL HOSPITAL of SOUTH BEND.

Each concern of your complaint will be investigated. This investigation typically includes a tour of the building, interviews with a variety of individuals, including administrative and direct care staff, as well as a review of records and documentation. You will be informed of the result of the investigation upon its completion.

Further questions about the complaint or investigation process should be directed to [name], RN, MSN by calling ACUTE CARE DIVISION, or by mail to this location. To ensure the best service, please include the complaint number listed above.

Sincerely,

[end of letter text]

- - - - - - - - - -

The second letter from the ISDH arrived a little over 9 months later, summarizing the agency’s findings. The text of the second response sans salutations is as follows:

- - - - - - - - - -

On [date], the Division of Acute Care, Indiana State Department of Health (ISDH) received your complaint against MEMORIAL HOSPITAL OF SOUTH BEND.
The ISDH completed its investigation into this complaint on [date].

As a result of this investigation, the ISDH determined that the complaint could not be substantiated. This means that either the factual allegations could not be confirmed or, if they were confirmed, they did not violate a law that the ISDH enforces. Please be advised that as of the date of this letter, this complaint has been closed.

Your cooperation in this matter has been appreciated. Should you have any additional questions or comments, please contact this office.

Sincerely,

[end of letter text]

- - - - - - - - - -

An accompanying form on a second page set out a few details of the investigatory process, a couple of which are as follows:

- - - - - - - - - -

This visit was for investigation of a hospital licensure complaint.

Complaint #[number]
Unsubstantiated: Lack of sufficient evidence

- - - - - - - - - -

On the face of it, for the one submitting a formal complaint of hospital misbehavior the response appears to be a categorical rebuke. Granted the agency has raised the question of its own jurisdiction, but one has to wonder what kind of evidence would be germane to a complaint of this sort. The investigator's visit took place seven months after the complaint was filed, roughly a year and nine months after the incident. Just what was it the “Medical Surveyor” expected to find, a police report, self-incriminating accounts lying about in hospital files, first hand objective accounts from the participating staff? I can’t imagine. What I do know is that I was never contacted for any input. It would seem on the face of it that the whole process was weighted heavily to one-side.

But this is not to say that the effort was without impact – on the people, on the institution, on the experience of future patients at that very hospital. And it is virtually certain that if the scores of other patients suffering mistreatment would formalize their mistreatments with complaints, the impact of those complaints on the quality of healthcare would be far greater.

I will follow these letters -- as soon a time permits -- with a spin-off letter received from another government agency in response to my original letter of complaint to the ISDH. It will illustrate the exponential impact of individual patient complaints. The cumulative impact of many voices is a very real effect and benefits us all.

art stump

Joel Sherman said...

Thanks Art,
I'm a little confused by the response. Assuming that the agency does have jurisdiction over violations of privacy, I don't know what evidence could be lacking. Assuming you named names in your complaint, they certainly could have verified the incident. It's not likely that all involved would have denied that the incident occurred. Is it possible that they interpreted your complaint as a violation of modesty only? Did you stress that it was a HIPAA violation of privacy as well; i.e. you were identified by name to a stranger who had no medical reason for being there?
I would call and ask to speak to the inspector and obtain a copy of their written report if possible. Might be best to have your lawyer put in the request. But the question is clear, why couldn't they substantiate the charges?
Let us know any follow up.

swf said...

This may have been asked and answered and perhaps I can't find it....

Mr Stump:
After the release and sale of your book, did the hospital ever make a public statement as to the truth of the matters stated within?

artstump said...

Re: letters of complaint…PART 1

Joel, I’m not so sure the ISDH has jurisdiction in matters of privacy violation. In fact I’m not sure that any agency has such jurisdiction. The response to my HIPAA complaint left me with the same feeling, namely that the agency contacted just wanted to clear its books of the minor nuisance that my letter represented. Granted hospitals, doctors, and governmental bureaucracies have important business to carry out and lives to save, but issues of privacy rights should have a place on somebody’s agenda. I’m convinced that the only way that will happen is when the cumulative public outcry of individual patients formalizing their complaints one by one as they happen raises the issue into such public prominence that it can no longer be ignored.

swf, there’s been no public dialog that I’m aware of. But there are time-honored strategies for handling corporate public relations. Virtually any corporate landscape has its share of cans of worms just waiting to be opened, and often the most effective strategy is for them to ignore them.

My approach early on was to create a record and to make the case that more responsible attention should be paid to the privacy rights of patients. I chose to press my case with a book, as it is a format that I am most comfortable with. Nevertheless, I realize that there are other battles and other battlefields. I’ve laid groundwork and my options remain open.

art stump

artstump said...

Re: letters of complaint…PART 2

I said earlier that I would post a spin-off letter resulting from my ISDH letter to illustrate the potentially far-reaching impact of every letter of complaint, in this case one made to a government agency. This response was from the Centers for Medicare & Medicaid Services, Division of Survey and Certification. The redacted text (for length) sans salutations and addresses is as follows:

- - - - - -

This letter is to acknowledge your complaint to the Indiana State Department of Health about Memorial Hospital of South Bend, South Bend, Indiana. The Division of Survey and Certification is responsible for assuring that health care facilities that participate in the Medicare and Medicaid programs meet Federal health and safety requirements.

Federal law authorizes us to investigate a complaint against an accredited hospital only if the complaint alleges the existence of a specific condition(s) that may result in a finding of a substantive health and safety deficiency under federal requirements. We have reviewed your allegation and appreciate your concern. However, from the information submitted, we do not find that the nature of your concern establishes the potential for a significant health or safety deficiency under federal requirements. Consequently we cannot authorize a Medicare investigation.

We do not mean to imply that your complaint is not important, or that the incidents you describe did not occur. Under the Medicare law we can authorize complaint investigations against accredited hospitals only in the circumstances described above. The complaint must be so serious that, if substantiated, we would take action to remove the hospital from the Medicare program and stop all Medicare payments. We do not have the authority to impose lesser penalties on hospitals.

We are making the JCAHO aware of your complaint. However, we will not reveal your identity to the JCAHO. Should you wish to write to the JCAHO directly, the address is…

- - - - - -

Again no jurisdiction for privacy violations, but two more agencies pulled into the loop. And again, in my view, a very good reason for all patients who have suffered privacy violations to raise their hands with formal written complaints. Silence in these cases is golden for corporate healthcare interests and assures business as usual at the expense of their most desperate patients, some of whom must live with the effects of their humiliating experiences for years to come.

I will follow this letter (again as time permits) with the letter from my lawyer to Memorial Hospital of South Bend. I think you’ll find it a refreshing change of pace.

art stump

MER said...

Art:

I could see a possible suit (not from you), claiming that a "substantive health deficiency" -- psychological health -- happened due to an incident like the one you describe or one similar to it. Specifically, someone who had already suffered the trauma of sexual abuse and humiliation and now had to face another trauma. Of course, this would have to be documented and serious psychological trauma would have to be demonstrated by psychiatric testimony.
My point - I hope the State Department of of Health doesn't just assume that these types of modesty violations will never result in a serious health problem. It could happen.

artstump said...

Re: Substantive health deficiencies…

Good point, MER. Not all that long ago we witnessed a popular uproar about post-rape investigations creating an ordeal for the victim almost equal to that of the original assault. Outrage grew and public attention was galvanized by various TV and film portrayals. Eventually the matter of traumatized rape victims being retraumatized by investigative and prosecutorial procedures received its due attention and things changed. The debate continues to this day and the system is not perfect, but it’s much better than it used to be.

For sure, a change like that didn’t just come about on its own. Interested and concerned people made it happen. Individual voices, affiliated voices, and political pressure all had a hand in restructuring how we think about certain of life’s experiences. Each of us can play a role in this kind of change. When something happens that is just not right, to us or to someone that we care about, we can raise a hand---on the spot or after the fact---and say, “Wait a minute, I object.” That’s often how change happens: one person, one voice, one complaint at a time. Every voice counts.

art stump

MER said...

I don't know which thread to post this under. It isn't directly related to any thread here, but does involve the whole issue of respect for patient dignity.

I recently reread an extremely profound and relevant essay by George Orwell. Now, if you think of "Nineteen Eighty-Four" when you think of Orwell, get that out of your mind. His best works are non fiction, observations. This essays, published about 1927, is called "How the Poor Die." About that time, Orwell was, as he titled one of his books, "Down and Out in Paris and London." This essay describes how patients are treated in the poor section of a Paris hospital. The conditions horrible conditions are described vividly, as is the cold, clinical, almost inhuman attitude of the staff. Orwell talks about being treated like animals. I thought of this thread when I read a sentence he wrote in that essay: "People talk about the horrors of war, but what weapon has man invented that even approaches in cruelty some of the commoner diseases? 'Natural' death, almost by definition, means something slow, smelly, and painful. Even at that, it makes a difference if you can achieve it in your own home and not in a public institution."

With all the problems we have in health care today, we must be grateful of the progress we've made in treating disease and caring for dying patients. Still, what we regard as a "good death" in Western culture, is quite different throughout most of the world where the vast majority of people don't have access to any kind of modern health care and often die terri

MER said...

My last post got cut off. It should end like this...

...terrible, painful, lonely deaths.

Joel Sherman said...

Medical care has evolved tremendously in the last 100 years. MER you probably have more knowledge of it than anyone here.
Hospitals were places where only the destitute went to die. Anyone who could afford it was taken care of at home.
When I started practice in the 70's, ward rooms which meant charity care were present in almost all hospitals. Now almost all rooms are semi-private or private. You can imagine what it would have been like to be in a ward room of 10 to 20 sick people some of whom would be moaning all day and night. It was also a nightmare in terms of infection control which was poorly appreciated in those days. All patients today enjoy immense privacy if not always respect when compared to the past.

Joel Sherman said...

Art, sorry it's taken so long to comment on your posts of Nov 20th. I am surprised that the Indiana state commission thought it had no authority in the matter. Most states can look into violations of privacy. Probably your attorney can look up their mandate in the law and tell you.
I'm not sure why you lodged a complaint with Medicare. They would not investigate this type of complaint. However HIPAA would, though you have to frame the complaint as a privacy violation, not just a modesty violation. If you need to, look at my link for their website where I believe you can enter complaints yourself.

artstump said...

Re: Substantive health deficiencies…

As promised, the following is the letter that brought my complaint to the top office of Memorial Hospital of South Bend. I have omitted names of other parties as well as dates.


Via Certified Mail

[date]

Mr. [name]
President & Chief Executive Officer
Memorial Hospital & Health System
615 North Michigan Street
South Bend, Indiana 46601-1033

Re: Mr. Thomas Stump

Dear [name]:

This law firm represents Mr. Thomas Stump, a cancer patient at Memorial Hospital.

On [date], Mr. Stump underwent a radiation treatment in the Radiation Oncology Center. During his procedure and while disrobed, Mr. Stump was informed by one of the therapists that an additional person was also in the treatment room. That additional person was a teenage high-school girl, who the therapist stated was “just here to watch.”

Needless to say, Mr. Stump was shocked, humiliated, and outraged by being offered up as a naked spectacle for the entertainment of a touring, female high-school student (who, I can only assume, was present because the Hospital had hopes of hiring her some day). Mr. Stump’s identity, the nature of his illness, and his sheer nakedness were all revealed so that the Hospital might try to impress a potential recruit.

Of course, this adolescent girl had absolutely nothing to do with Mr. Stump’s treatment or care. She was a mere sightseer – nothing more, nothing less.

When he began treating at Memorial Hospital, Mr. Stump was lead to believe by the Hospital that his health condition and medical information were private matters, and that only healthcare providers directly involved with his care and treatment would be allowed access to information about his condition and treatment. However, it appears that the Hospital is willing to sacrifice patients’ privacy and dignity to further a misguided recruiting initiative.

[new page]

artstump said...

Re: Attorney Letter to Memorial…Page Two

Mr. [name]
[date]
Page 2 of 2


Mr. Stump has already attempted to address his concerns with the Hospital’s management, but to no avail. He has written to Dr. [name] and Mr. [name] about this matter. He has received nothing but non-committal form letters in return. Enclosed for your review is a copy of the following:

1. Dr. [name]’s letter of [date], to Mr. Stump;
2. Mr. Stump’s letter of [date], to Mr. [name], Corporate Compliance and Privacy Officer; and
3. Mr. [name]’s letter of [date], to Mr. Stump.

As you can see, Dr. [name] states that the high-school girl was really part of the treatment team (“other allied health students”) and that the Hospital had just “assumed that your consent to allow health care students to participate in your care also included the high school student’s observation.” Those, of course, are asinine statements. The girl was not part of the treatment team; Mr. Stump did not consent. The statements would be laughable if the matter were not so serious.

For his part, Mr. [name] sent Mr. Stump a standard form letter. It is full of platitudes about “patients’ privacy” and HIPAA, but says nothing of substance.

So, why am I writing you? I am writing to you in the hope that you will investigate the matter, meet with Mr. Stump to discuss his concerns, and put an end to the Hospital’s current recruiting practice of allowing persons who are not part of the health care team to witness private medical procedures and to gain access to patients’ private medical information.

I look forward to hearing from you.

Very truly yours,



[attorney name]
PDM:jag
cc: Mr. Thomas Stump


Dr. [name]
Mr. [name]
Ms. [name]

[end of letter]

This letter resulted in a further exchange of communications between my attorney and the attorney representing the Hospital. Eventually the Hospital agreed to an arranged meeting between me and one of the Hospital’s chief operating executives. It was the tone and substance of that meeting that cemented my resolve to write My Angels Are Come.


art stump

Joel Sherman said...

A first impression of the letters, Art.
I think this question has been asked before, but I don't think you've answered. Has Memorial Hospital been the focus of any local publicity about your case? Has your book achieved that already?
It doesn't sound as if the hospital will admit to any wrongdoing, even though the case was blatant. That makes me think that they are afraid of a lawsuit. If that's the case, you'll only get further if you file suit for a violation of privacy. I don't know anything about Indiana law, but similar actions are possible in most states. It will also ensure that it is on the public record in South Bend. Most newspapers will publish facts once a lawsuit is filed unless there are strong ties between Memorial and the paper which is always possible.
You need to define what you want, a public apology, monetary damages or both and then decide with your lawyer the best way of achieving it.

MER said...

"It was the tone and substance of that meeting that cemented my resolve to write My Angels Are Come.

Art -- you may have already addressed this before, but what was the tone and substance of that meeting?

Just a thought -- part of the problem that may be causing the response you getting is this:

Although you discuss in detail the "incident" in your book -- the overall tone of your book is very positive. The hospital may actually see your book as a good advertisement for treatment there. After all, despite the "incident" you still kept you faith in your treatment team and -- what's important to them (and you) -- you came out alive. The hospital may see themselves in your book as having dealt with the issue properly within the context of a successful treatment.
The problem may be that your book is a fair telling of a complext story. You mix the good the bad with the ugly -- which makes your book extremely credible. But in the hospital's eyes, they just see the positive in the guise of a living patient, one whose life they saved.

Anonymous said...

Hi Art. Was the student a minor? If yes, they would require signed consent by the parents to take part. If special consent needed to be given by the parents as they are a minor, why wasn't special consent needed to be given by the patient as well?

I knew they would try and say you agreed when allowing students. That's a legal loophole that I am sure they utilize here. Patients are assuming that children won't be involved in their care and with good reason. And while we are taught never to assume anything this just isn't something patients would even think to ask.

What really gets missed in all of this is that minors can't enter binding legal contracts. You can ask them to sign confidentiality papers but they mean squat as they are children in the eyes of the law. They have no legal obligation to the patient or hospital here.

I would push them to change their consent forms to include that minors might be included in your care where serious health issues and intimate procedures are involved as part of a shadow program. They won't do it, but you can then open a dialogue as to why they subject patients to this without being willing to put it out there in black and white.

Dr. Lisa

Joel Sherman said...

Good reminder Dr Lisa. I can't recall whether we've talked specifically about this issue before. If they asked the student to sign confidentiality forms (did they?), they would not be binding if she was a minor. Even if she was 18, it's hard to believe she wouldn't have compared notes with at least other students in the program.
Dr Lisa, Art's book should be of particular interest to you as a urologist if you want a patient's view of prostate cancer therapy. The book is about far more than the privacy violation.

MER said...

Art -- a suggestion. Write an article about your experience. Focus on the incident. Yes, you're glad to be alive. Yes, most of your caregivers were "angels." You can make that clear. But focus the article on the incident and on the hospital culture that allows this kind of privacy violation and how the hospital hasn't really responded to your concerns. This could happen to you, too, your article should say to reader/patients. Keep it to about maybe 3000 words if you can. Get it published in a popular magazine. With all this health care news about, you should have no problem selling it. You may also consider, before you actually sell the article, submitting a copy to the hospital asking if they'd be interested in talking with you before what you say in the article about their lack of response to you is published. I know this is playing hardball, but maybe that's what it will take.

artstump said...

Comments…

Thank you all for your very thoughtful observations.

Joel, the answer to your question about high-profile, unfavorable publicity is that there has been nothing of the kind. High profile and high visibility display is how one moves books, or so I’m told again and again. But at my core I am a very private person. As I noted earlier, my purpose from the outset in writing the book was to create a record and in doing so to make a case for the moral importance of privacy---and I would add to that my desire to say thank you to some very wonderful people. A lawsuit in the proper hands would bring things to a whole new level. And my options in that regard remain open.

MER, I felt the meeting was what---in all likelihood---it was, a forced engagement, a grudging acceptance of the recommendation of the Hospital’s attorney that they placate a potentially bothersome patient. My earlier meeting with my oncologist (My Angels Are Come page 109), had sharpened my understanding of the dynamics of caregivers working in a corporate environment. His embarrassment (my word) about the incident together with his immediate remedial action went a long way toward my seeing my treatment team as a well-meaning, caring group of people. I felt none of that in my officer meeting. In that meeting we were simply going through the motions.

Dr. Lisa, my attorney’s first instincts were to zero-in on his opponent’s vulnerabilities, and he went immediately to the kinds of questions that you raise. In turn, the Hospital’s attorney showed awareness of his own flawed position, it seemed to me, by letting us know that the high school student would not be identified in any fashion: name, age, etc. The process of discovery in the context of legal action, of course, would take away much of that duck-and-cover defense.

MER, I think your suggestion about an article has merit. Had not considered that approach before. I’ll think on it, and on the amount of time it would take to write it. It only took four years to complete the book.

Joel, you’ve raised the matter of HIPAA complaint filings. I thought I might post my experience with HIPAA so that others might see what’s involved and maybe what to expect. I’ll try to do that soon. Thanks again to you all.

art stump

Joel Sherman said...

Thanks for all the responses Art. You have enough choices that you have to decide which of your courses are most likely to succeed. You have to decide how to balance your need for privacy with the urge to get your story out.
I await your HIPAA comments. I'm not clear whether you've filed a federal complaint, which I believe is easy to do.

artstump said...

Re: HIPAA Complaint…

As promised, the following is the substance of the form [HHS-700(4/03)(FRONT)] filed to initiate the HIPAA complaint referenced. A second page for optional information is omitted, as I completed none of it. The form is from the Department of Health and Human Services, OFFICE FOR CIVIL RIGHTS (OCR) and is completed online. In the representation that follows, entered information has been italicized for clarity and I have omitted the name of a Hospital staff member.

=======

HEALTH INFORMATION PRIVACY COMPLAINT
If you have questions about this form, call OCR (toll-free) at:
1-800-368-1019 (any language) or 1-800-537-7697 (TDD)


[ 9 fields for Complainant’s identifying information ]

Are you filing this complaint for someone else? -- NO

Who (or what agency or organization, e.g., provider, health plan) do you believe violated your (or someone else’s) health information privacy rights or committed another violation of the Privacy Rule?

PERSON/AGENCY/ORGANIZATION -- Memorial Hospital of South Bend
STREET ADDRESS -- 615 N. Michigan Street
CITY -- South Bend
STATE -- IN
ZIP -- 46601
PHONE -- (574) 234-7379

When do you believe that the violation of health information privacy rights occurred?

LIST DATE(S)
11-13-03

Describe briefly what happened. How and why do you believe your (or someone else’s) health information privacy rights were violated, or the privacy rule otherwise was violated? Please be as specific as possible. (Attach additional pages as needed)

On November 13, 2003, I was receiving radiation therapy treatment in the Radiation Oncology Center at Memorial Hospital. There were a number of therapists present in the treatment room. My treatment required that I disrobe in the presence of the therapists and lie down on a treatment table in the center of the room.

During the preparation and administration of the treatment procedure my identity was revealed to all, as I was addressed as “Mr. Stump”, the nature of my illness, prostate cancer, was revealed to all, as markings on my body appropriate to the treatment of prostate cancer were pointed out, and of course my nakedness was revealed to all.

In the course of the treatment one of the therapists, Clinical Supervisor [name], informed me that there was an extra person present in the room. “She’s just here to watch,” I was told. This person turned out to be a female high school student, who was there to observe everything. She was not a hospital employee and was certainly not part of my group of caregivers. Her presence was without my prior knowledge and without my permission. I believe that I and my illness were simply being used to promote hospital employment opportunities to an impressionable high school girl. Her presence during my medical treatment resulted in humiliation, violation, and outright rage for me.

I suspect that a similar incident had occurred the week before, although the presence of the young girl in that case was never explained to me. Since I was only a week or two into my treatment schedule at the time of these incidents, I was still in the process of familiarizing myself with the faces and names of my various therapy caregivers. Except for the apparent youth of these visiting sightseers, I would have taken them in their hospital garb to be members of the therapy team that I had not yet met. On that basis I suggest that the same kind of violation had in fact occurred the previous week, when another young face was present during my treatment, never to be seen again.


Please sign and date this complaint.
SIGNATURE -- [ signature ]
DATE -- 4/15/2004

=======

I will follow this with a post of the letter received six months later from HSS, essentially disposing of the complaint.

art stump

artstump said...

Re: HIPAA Response…

As promised, the following is the body of the letter from the Department of Health & Human Services in response to my complaint. I have omitted the name of a Hospital staff member.

=======

[date stamped OCT 22 2004]

Mr Thomas Arthur Stump
[address information]

Mr. [name]
Corporate Compliance & Privacy Officer
Memorial Hospital of South Bend
615 North Michigan Street
South Bend, Michigan [HHS error] 46601

Our Reference number: [number]

Dear Mr. Stump and Mr. [name]:

On April 20, 2004, the Office for Civil Rights (OCR) received a complaint from Mr. Thomas Arthur Stump (hereinafter, the Complainant) alleging that Memorial Hospital of South Bend (hereinafter, the Covered Entity) was not in compliance with the Federal standards for privacy of individually identifiable health information (45 C.F.R Parts 160 and 164, Subparts A and E, the ‘Privacy Rule’). Specifically, the complaint alleged that the Covered Entity disclosed the Complainant’s protected health information when the Covered Entity allowed a person who was not an employee of the Covered Entity or a member of the Complainant’s treatment team to be present during the Complainant’s treatment regimen without the Complainant’s permission. (45 C.F.R.164.502(a)).

OCR enforces the Privacy Rule, and also enforces federal civil rights laws which prohibit discrimination in the delivery of health and human services because of race, color, national origin, disability and age.

On September 16, 2004, OCR notified the Covered Entity of the complaint.

Page 2

The Covered Entity’s Corporate Compliance and Privacy Officer, Mr. [name] provided OCR with a copy of a letter sent to the Complainant on December on December 2, 2003, from the Covered Entity’s Vice President, [name], D.O. The December 2, 2003, letter acknowledged that the Covered Entity had assumed the Complainant had given permission for a high school student to view the Complainant’s procedure. The December 2, 2003, letter also contained the following: (1) an apology to the Complainant; and (2) notice that as a result of the complaint the Covered Entity reminded the coordinator for the high school student program that patient consent must be obtained prior to a student being allowed to observe a procedure performed on a patient.

All matters raised by this complaint at the time it was filed have now been resolved through the voluntary compliance actions of Memorial Hospital of South Bend. OCR is, therefore, closing this case.

OCR’s determination as stated in this letter applies only to the allegations in this complaint that were reviewed by OCR.

Under the Freedom of Information Act, it may be necessary for OCR to release this document and related correspondence and records upon request. In the event OCR receives such a request, we will seek to protect, to the extent provided by law, personal information which, if released, would constitute an unwarranted invasion of privacy.

If you have any questions regarding this matter, please contact Mr. [name], Investigator, at [phone#] (Voice), [phone#] (TDD).

Sincerely,
[signature]
[name]
Acting Regional Manager
Office for Civil Rights
Region V

=======

The OCR’s apparent eagerness to accept the Hospital’s automatic response is what concerns me most. The response was blatantly self-serving and convenient and had a practiced air about it: we assumed the patient was okay with it, but we’ll remind to staff to do better next time. In my attorney’s view the Hospital’s response was “laughable” on its face, but in the view of the OCR it was entirely sufficient.

I’ll follow this post with my letter responding to the OCR’s resolution of my complaint.

art stump

artstump said...

Re: Response to OCR…

As promised, the following is my letter responding to the OCR’s letter to me. Once again, I have omitted personal names of others.

=======

Via Certified Mail

November 2, 2004

Ms. [name]
Acting Regional Manager
Office for Civil Rights, Region V
233 N. Michigan Ave., Suite 240
Chicago, IL 60601

Re: Your reference number: [number]

Dear Ms. name:

Thank you for your letter of October 22, 2004, but I must say I am puzzled by the disposition of my complaint based on the content of your letter.

I fail to see how admissions on the part of Memorial Hospital with respect to their improper administration of a questionable employee recruitment program would ever constitute compliance, voluntary or otherwise. Your letter outlines a series of mischaracterizations and unfounded assumptions, and then sums up the matter by declaring that “all matters raised by this complaint . . . have now been resolved through the voluntary compliance action of Memorial Hospital.”

Please note:

1. The matter of assumed permission is totally without foundation. All requests for the Hospital to produce any documentary basis for this assumption have been ignored. The claim is simply a defense fabricated after the fact.

2. The “apology to the Complainant” was not an apology. To call it so is an offensive mischaracterization of the letter’s content.

3. The remedial action allegedly taken by the Hospital, that of reminding the coordinator of the program to do the next time what she was supposed to have done the last time, simply addresses after the fact the result of the improper administration of a Hospital employee recruitment program. All previously established policies and programs remain in place, awaiting a similar incident in the future.

As a victim of an errant Hospital practice, I do not see the value of a regulatory mechanism that uses the kind of “voluntary compliance” cited in your letter as a reason to avoid addressing the merits of my complaint. When compliance consists of a few perfunctory, unchallenged communications with Hospital representatives, who essentially say “trust us, everything is fine now,” one really has to wonder.

The Hospital is not an inadvertent third party in this. It was the Hospital’s avowed interest in recruiting new employees that resulted in its bringing naïve high school student observers into private and highly intimate patient settings in the first place. Wooing such students with ringside seats to the real-life drama of cancer patients struggling to stay alive has presumably proved itself a powerful and effective recruiting tool.

The effectiveness of such a tool and the continuing stake of the Hospital in recruiting new employees virtually assure that another “incident” will happen. Whether or not the next incident ever gets reported and called to task, of course, depends on the outrage and the dogged persistence of its next victim.

These are not trivial matters, even though the Hospital may regard them as just so much paperwork. I would hope that the Office for Civil Rights would take a more aggressive position with respect to business practices that are so poorly designed as to almost guarantee the continued violation of patient privacy rights.

I am requesting that the Office for Civil Rights reopen its investigation of my complaint and determine whether Memorial Hospital of South Bend violated the Privacy Rule when it disclosed my protected health information to a high school student without my permission.

I look forward to hearing from you. Thank you.

Cordially,


Thomas Stump

=======

Comments to follow.

art stump

artstump said...

Re: Comments on the above…

I received no response to this letter. Pushing the matter at the time would have gotten very involved, probably involving an attorney. And I was just beginning to appreciate the extent of the demands on one’s time when writing a book. So what’s the point?

Everyone who has been wronged by the healthcare system can take the same steps I did. I certainly don’t think of myself as an organizer or an activist, but I can see how great things and important changes come about. My voice, your voice, and in the end many voices are raised in a chorus of objection. That’s how it starts. It just takes a bit of time and a bit of resolve, and a postage stamp or two.


art stump

Joel Sherman said...

I think you did very well Art. You aren't satisfied with the response I'm sure, but it was effective in the sense that the hospital cannot do this again without exposing themselves to greater liability. I think it is very likely that you solved the problem for all future patients.
I'm not surprised that no fines were levied. HIPAA doesn't do a lot of that, and they had no reason not to accept the hospital's assurance that it was unintentional and won't be repeated.
If you want to embarrass the hospital you will have to decide how to get local publicity. If you want monetary damages, which I think we'd all agree are deserved, you'd have to bring action in state court.
It's the first I've ever heard that the violation was likely the second time it happened. Were the circumstances similar? If so, it would indeed be powerful evidence that the hospital did this routinely. What may have been unusual was that a nurse announced the girl's presence in front of you. Likely they usually did that outside without the patient's presence. If you stressed that fact in the initial complaint, maybe HIPAA would have issued a more formal censure.

Joel Sherman said...

This link was posted on the women's thread but is also appropriate here concerning prostate cancer screening in the UK.

Anonymous said...

"Indeed all three of my attendants seemed genuinely surprised that there was no flailing or thrashing about on my part and freely exchanged comments to that effect…."

Why three attendants? Wouldn't that leave at least two of them to do nothing but gawk?

artstump said...

Re: the Gawking Factor

Anonymous, I believe you are referring to the Volumetric Mapping Study described in chapter 18. That was technically called a transrectal ultrasound of the prostate. Given the potential for the unforeseen in a procedure of that sort, I personally would be careful about second-guessing the protocol that the doctor had worked out for an effective and safe outcome.

In my case one assistant was diligently at work right next to the doctor, handling instrumentation and associated computerized hardware. Another, nurse Rachael, was at my shoulder ready to deal with a hyper emotional patient should that become necessary. And the third did not catch my eye much, but was presumably at the ready in the event something unforeseen would happened and a third set of hands would immediately be required.

I have no problem with any of that, as everyone present had a place on the “team.” I was graphically exposed, of course, but that is sometimes the nature of serious medical treatment. I was not being exploited and I was not being used. The clear, focused purpose of everyone present was the healing of my body.

That procedure was quite different from “the incident” described in chapter 13. That case was thoroughly exploitive in my view, in that Memorial Hospital used my illness and my vulnerability to better its own bottom line at my expense, and that as a matter of course. There were any number of ways that they could have cultivated interest in potential employees, but my situation left me available and vulnerable and free. And so my privacy, my dignity, and any associated rights were summarily set aside, and I was put on display.

art stump

Joel Sherman said...

Art, although the thread has become inactive, I hope you will continue to update us if there are any new developments.
It would be easy to reawaken interest.

artstump said...

Thank you, Joel. I will certainly do that. I take a long-term view on this whole process, to say the least. I believe it's far from over.

And thank you for your own perseverance.

art stump

Anonymous said...

"I was graphically exposed, of course, but that is sometimes the nature of serious medical treatment."

But here is our problem. Many men do have a problem with being grphically exposed with women present, and will not have the option of care. The medical community doesn't care that we are dying. If they did they would fix it.

A N D

artstump said...

To A N D from Feb 18, 2010

It comes down to a matter of perspective, of course. If a prospective patient has a problem with a member of the opposite sex delivering healthcare services, personal or otherwise, then a little homework up front is in order to find a facility that can accommodate those preferences. I explain in the book that, somewhat to my surprise, I find that I have always seemed to have a preference for a woman’s touch, including all sorts of medical care. At some point I may find myself asking for a male instead of female presence, but my primary focus has been and continues to be the quality of health care that I receive. The full text of the paragraph from which you quoted addressed the presence of women during a particularly personal medical procedure. It reads:

“I have no problem with any of that, as everyone present had a place on the ‘team.’ I was graphically exposed, of course, but that is sometimes the nature of serious medical treatment. I was not being exploited and I was not being used. The clear, focused purpose of everyone present was the healing of my body.” (from 12-18-09)

Raise issues like these with your doctor and explore your options. We sometimes feel like pawns in the medical process because it can be so overwhelming, but that’s no excuse. If you find it difficult to talk about such things with care providers directly, ask the hospital or medical facility that you are using if they have an ombudsman you can speak with. If they don’t, more homework is in order. Find a care provider that does. As I’ve suggested many times on this forum, being a patient is not a passive activity. Let you voice be heard.

art stump

Joel Sherman said...

I like your response Art.
Everyone has to make their own desires known. Nothing will change without that intervention.
I agree with your personal approach though. The gender of the provider should be secondary to obtaining the best health care possible. I realize that is not possible for some patients, many on this blog. But I personally would be loathe to interfere with the gender of personnel in sophisticated areas that depend on teamwork such as radiation therapy or the OR.
Where I do have an immense problem is with medically unnecessary personnel. The high school student watching you and opposite gender chaperones are examples of that.

Anonymous said...

Glad to hear back from you, Art.

I essentially agree with you and Joel on this. But I do have another concern. I think the health care system itself needs to take more responsibility in gaging the psychological state of patients regarding modesty issues. This can affect a patient's healing process. I agree that being a patient isn't a passive activity. I've constantly advised patients to speak up. But the communication flow regarding body modesty shouldn't be one way from the patient to the system. The system, which represent a powerful cultural force, has the primary responsibility of opening up this communication. As I'm beginning to see it, the only way they'll feel impelled to do this is if they have written policies regarding issues like -- chaperones, observers, opposite gender care, student access, etc. And patients need to have access, be given these documents to read so they know the policies.
I'm beginning to find that many hospitals have vague statements on these issues embedded in documents that cover privacy -- or, they don't have any written policies at all. If they have them, they're stamped "Top Secret" because I can't find them or have them sent to me.
My experience is that hospitals will talk about this issue informally at lower levels. Once it gets up to the higher levels you're ignored. They don't want to deal with patients on this issue. It's a really closed system up on top. Unless you're a health care professional or specialist, you're opinion is not worth much.

Anonymous said...

I forgot to sign that last commentto Art.
MER

Anonymous said...

Yes I agree MER. when you look up a procedure they often have statements like " we protect patient modesty" or similar. But what does that mean? Who decides? What exactly do they do to protect your modesty for a particular procedure? This is never articulated. In my experience the specifics are never offered unless I ask for them. (And even in those cases is often not very specific.)
The issue is giving the patient clear specific information, not vague statements, the success or otherwise is not defined by the patient, but the "demi-gods", doctors or nurses.

Chris

artstump said...

To MER from Feb 28

MER, I agree with you, but would expand a bit on one small point, as a matter of emphasis. If we assert that the “health care system itself needs to take more responsibility in gauging the psychological state of patients regarding modesty issues,” we allow the many institutions and financial interests that make up that system more latitude than they deserve. Patient privacy is a given, standing right of the patient, one not dependent on the initiative or benevolence of healthcare organizations. If I may quote from My Angels Are Come (ch 15, p 105):

“A central tenet of ethical medical practice holds that patient privacy is an inviolable, irrevocable right of first principle, one that inheres in the individual patient—not in the institution that provides facilities, not in the doctors or caregivers who provide services, not in the administrators whose interests and responsibilities are pecuniary in nature, but in the individual patient. That is the priority.

Everything else must follow from that precedence; the design and utilization of facilities, the adoption and oversight of programs of every sort, and the collective behavior of the institution toward its patient population must all derive from the foundational premise that the right to privacy is inherent in the individual patient. It follows that an institution cannot by simple fiat and in its own self-interest set aside the privacy rights of any of its patients.”

In my view, when it comes to patient privacy, there is nothing for healthcare organizations to take responsibility for --- because they are obliged already. The responsibility to jealously defend the rights of the patients in their care is incumbent upon them already, heavily incumbent upon them. When they do not monitor and protect those rights, they are in violation: in some cases blatantly in violation. Healthcare institutions need not be wooed into the fold of respecting patients’ rights, they need to be held accountable --- by law makers, by regulating authorities, by caregivers, and especially by patients themselves.

I seem to keep winding up back at patient responsibility. And, of course, that isn’t the entire answer. But as patients we can’t simply wait quietly for healthcare institutions to “do the right thing,” to set aside their own obvious self-interests, financial and otherwise, and put the welfare of their patient first. There are too many competing interests in-house, too many convenient rationales available to them. With ample marketing, public relations, and political lobbying budgets they can easily sell themselves as the community saviors time and time again. As patients you and I cannot take a back seat to all that power. When called to raise our hand and speak up for dignity and respect, whatever the circumstances, we must do our part. We are part of the answer.

art

Anonymous said...

I agree with you, Art. I think it's semantics. You write: "there is nothing for healthcare organizations to take responsibility for --- because they are obliged already."

We all have obligations, but just having them doesn't mean we take responsibility for them. We should. But we don't. So -- I'm saying they need to actually take responsibility (which they sometimes don't do) for these obligations that they have.

But, as we've been discussing on the informed consent thread here, so many of these obligations (patient rights) hospitals have are worded in such a vague format that they could mean anything or nothing. They're probably written by lawyers, worded to escape responsibility rather than to take responsibilities.

And yes, patients are a major part of the solution. As I wrote recently on the Bernstein blog -- we as patients need to have high expectations of the health care system and make those high expectations known. Too many patients have low expectations, just expected lousy customer service, terrible communication, modesty violations. We own each other and the system better than that.
MER

artstump said...

To MER from March 2, 2010

Nicely put!

art

Joel Sherman said...

This article describing one man's reaction to prostate surgery for cancer was posted to the Male Modesty thread. But it is probably more pertinent here.
It doesn't have too much about modesty, but anyone interested in prostate cancer and its therapy will find it a worthwhile read.

Anonymous said...

Art if you are still with us here, I have read your book and even contacted Memorial. They seem to be a bit more careful with what they say these days. One thing that has really bothered me as I read your book and your posts, you speak several times about having to disrobe infront of the therapist. It has always been my experience and understanding that a patient is always given the curtosy of disrobing in private and then staff enter. I have most often been given a gown or paper cover though my PCP does a quick Q&A then tells me to strip down to my shorts and he will be back and then leaves where i go down to my shorts and sit there in my underwear waiting for him to return. It sounds like you were expected to undress infront of your therapist's and in this case the HS student. Is that correct, I also recall from the book you described the "power" dynamics as one of the therapist and you engaged in positioning of your "shorts" for treatments. As I recall after the incident and your complaint you were accorded a screen to undress behind. Were you required to stip naked infront of the staff? That seems to go against what many of us see as a common curtosy of being allowed to disrobe in private...alan

artstump said...

To Alan from Aug 4, 2010

Yes I’m still with you and I’ll try to address a couple of issues you raise

At the risk of belaboring the point, the concept of nakedness is a highly relative and subjective one. Nevertheless, I suggest that when you find yourself uncovered to the extent that you would be arrested in public, you are in fact naked.

And while the Volumetric Mapping Study described in chapter 18 has you about as naked to the world as a person can be, the radiation therapy sessions for prostate cancer are quite different. You must still bare yourself in a manner that would not allow you to walk the halls, but you are not totally without clothing… at least not in my case.

I believe you are thinking of chapter 32 with your reference to screens. I don’t remember dressing screens being in my treatment room, but I did use an analogy in chapter 32 as follows:
“As I sat and removed my shoes and trousers Sarah approached and raised a small hanging towel in front of me, half separating the two of us. The offer of token modesty was a nice gesture, even if she could easily see over the top of the towel. The tacit understanding, I gathered, was that both patient and caregiver should proceed as though a full-size dressing screen were present, and then everyone could get on with business.”

I personally found such protocols artificial and forced, but at the same time I appreciated the effort on my therapists’ part. At some point in my treatment that practice faded into disuse and I was much more comfortable. I knew then that we had become a team, and that they had their parts to play and I had mine.

This was my treatment room, a trusting and private place – intimate even – for both me and my team, a place where we shared a strong sense of common purpose. The Hospital’s practice a month earlier of bringing a young female high school student into that room “just to watch” had blatantly exploited that trust and bond between therapist and patient, and on any level the practice was inexcusable.

I will try to follow this post in a couple of days with another post, a recent encounter of my own that illustrates how a little assertiveness on the patient’s part can go a very long way.

art

artstump said...

Re: Patient Assertiveness PART 1 of 2 -- Aug 8, 2010

I had made an appointment to see my urologist (Dr. Kershaw in the book) about a very personal matter only indirectly related to the cancer that he had treated me for. While seated in the waiting room I saw a young man enter the reception area and go directly to the doorway leading back to the treatment rooms and doctor offices. I heard him address one of the nurses there and explain that he was there to see Dr. Kershaw and that he was told that he could spend some time talking with him.

The man was wearing casual slacks and a shirt with sleeves rolled up, but he carried no briefcase or folders or papers of any sort. He was clearly not a deliveryman and his behavior showed that he was not a patient. My first thought was that he was probably a med student or a young intern who had come to observe Dr. Kershaw at work. Yet the whole exchange with the nurse at the doorway had a very impromptu feel about it. It was as though he only expected to be here for a short time. The nurse checked in the back and then led him on down the hallway.

A few minutes later my name was called and was I escorted to the urine sample room, then to a small examination room to await Dr. Kershaw’s arrival. I hopped up on the exam table and got myself comfortably seated. Sometimes the doctor’s arrival took a while.

I kept thinking of the young man from the waiting room and wondered what I might do if he in fact were an observer here to kibitz Dr. Kershaw’s bedside manner. I was clear in my own mind that my business with Dr. Kershaw was private and that I wanted it to stay that way.

-art stump

artstump said...

Re: Patient Assertiveness Part 2 of 2 -- Aug 8, 2010

Minutes later Dr. Kershaw knocked and entered smiling, folder in one hand, extending his other hand for the hearty handshake that was his way. The young man from the waiting room was close in tow and closed the door behind them. After exchanging greetings and brief small talk with me, Dr. Kershaw turned to introduce the young man, whom I shall call Dr. Smith.

Dr. Kershaw explained that Dr. Smith would be “working with our office for a while.” The two of us shook hands and exchanged greetings.

After a bit more small talk Dr. Kershaw flipped open the folder that he’d brought with him and, while Dr. Smith looked on with arms folded, inquired of my situation.

“Well,” he asked cheerfully, “what’s going on today?”

Without hesitation I turned to Dr. Smith and said to him, “Dr. Smith, would you excuse us please?”

He was taken aback by the remark, as was Dr. Kershaw, but both immediately responded that that was certainly not a problem and quickly arranged in a somewhat awkward exchange between the two of them the that Dr. Smith would wait out in the hall. I felt that I had -- not inadvertently -- trumped Dr. Kershaw’s role as host with my role as patient. Nevertheless, both doctors openly extended themselves in accommodating my request.

After our doctoring concluded, Dr. Kershaw reminded me that he would be seeing me in November for my annual post-treatment prostate checkup. As he rose to open the door for our exit, I thanked him for everything and then apologized for having asked Dr. Smith to leave the room. Dr. Kershaw stopped squarely in the open doorway and turned to me, finger raised in emphasis.

“Not at all,” he said. “This is your house. We want to do things here exactly how you want them done. See you in November?”

With our parting handshake in the hallway I noticed over Dr. Kershaw’s shoulder that Dr. Smith was waiting against the wall at the far end of the corridor. I turned and left the office.

There was no confrontation or challenge needed to resolve my discomfort with an outside party being present in my examination room, doctor or no. I was, after all and in Dr. Kershaw’s own words, in my house and my examination room. I simply had to make known my wishes in a clear and timely manner.

If this doesn’t seem to be the underlying philosophy with your own healthcare provider, then maybe your first move should be to look into alternative providers. There actually are facilities and healthcare professionals out there who give more than lip service to the idea of “patient centered healthcare.”

-art stump

Anonymous said...

Hi Art,

whilst I appreciate the way in which you asserted your rights, I still think your Doctor was remiss in the introduction. Rather than the:
"Dr. Kershaw explained that Dr. Smith would be “working with our office for a while.”

I would expect that this Doctor should have been introduced as to who he was (student/training etc) and your explicit permission sought for him staying. Its just not appropriate in may view for this "Doctor" to presented in this way; as it means that the patient has to "read between the lines" and take action to ask him to leave.

As has been mentioned on this site before, not all patients, men in particular, are prepared to be so assertive. And I do think they should have to be; their consent should be sought unambigously.

Chris

Anonymous said...

herein I feel lies one of the biggest issues we face. From my personal experience with several hospitals and my PCP, accomodation is often recieved better than one would antcipate IF YOU and i stress YOU ask. I truely feel providers are trained or learn not to ask, they have a protocol and accomodation interupts that protocol, that routine. It doesn't mean they don't recognize the issue, but as long as we don't challenge it they will take teh path of least resistance and assume the measures they have been taught, using certain phrases, knocking, etc. all are sufficient for the patient, even if deep down they know. Everytime I asked I not only recieved accomodation I was comfortable with It was respectful. I still feel they are aware of the issue,, example one day I went to my PCP for a physical. The nurse whom had been there quite awhile in a matter of fact voice said "the doctor has a NP in training shadowing him today would you mind if she observed, I told her "no problem but when it comes time for the hernia check and DRE she will need to step out" she looked at me and said I don't blame you I have to ask...the look on her face indicated she knew it would be a big deal for at least some....they know..if we ask they know we know to....alan

Joel Sherman said...

Art, could you tell us why you asked 'Dr Smith' to leave? Was it related to modesty, or did you want to discuss medical issues in private with your physician? I ask because I think it is helpful to stress that many issues of patient privacy are not related to modesty per se, but to confidentiality.

artstump said...

To Joel from August 13, 2010

Possibly several different things played into my request. I suppose in my own mind I am becoming increasingly sensitive to and attentive to the idea of making myself totally available to my own personal treatment team. Issues of modesty discomfort, loss of privacy and other not-so-obvious personal prerogatives, etc., can often be part of the healthcare experience. That I accept without a problem.

However, if a person, regardless of rank, role, or credentials offered, is not a necessary, functional part of my healthcare team, then the presence of that person in my exam room or treatment room is an intrusion. If unannounced beforehand, that intrusion is unauthorized and therefore an unacceptable invasion of my privacy. I may choose to accept that violation, ignore it, or suffer it behind a stoic façade of one sort or another. Indeed I may not choose to do anything at all and simply succumb to the intimidation of the moment --- and that at my peril.

In the book my greatest objection to Memorial Hospital’s use of this practice, to the extent that they employed it, was that it preyed upon the desperation and the weakened states --- both physically and emotionally --- of some of their most vulnerable and needy patients, the seriously ill. And the enabler for each unfolding episode was the bond that inevitably develops between such patients and their closest and most trusted caregivers. In such circumstances the patient is ultimately left without advocate or protector. The burden of raising an objection, if an objection is to be raised, falls squarely upon the least-able-to-resist person in the room --- namely, the seriously ill patient.

In the case you are asking about, Joel, although the matter that I wished to discuss with Dr. Kershaw was indeed very personal --- and on that basis alone would have prompted my request of Dr. Smith --- I found myself responding to Dr. Smith’s presence much as a matter of principle. Possibly as much as anything, my request that Dr. Smith “excuse us please” was an exercise in clarity, the invocation of one of those rights that we enjoy without thinking and risk losing if we fail to use it. Dr. Kershaw’s reply moments later as we exited the room both endorsed and reinforced that clarity wholeheartedly.

-art stump

artstump said...

Re: my August 14 comments

I just came across an interesting article by attorney John Fisher, written 8/13/2010. It appears on his website www.protectingpatientrights.com. As they directly relate to the above discussion, I’ve excerpted a couple of points from a section called Your Rights Under the HIPAA Privacy Rule.

“HIPAA is intended not only to protect your medical information from unwarranted disclosure, but also to protect your rights as a patient. Here's how you can exercise those rights:

Observers: If you are being examined by a physician and your treatment is being observed by others who aren't participating in your care, such as sales representatives, consultants, or office administrators, you can ask them to leave the room.

Forms: Read carefully any privacy forms you are asked to sign. Some forms that at first appear only to be an acknowledgment of your rights also provide authorization for sharing of information for marketing purposes, which is allowed under HIPAA. You should not be required to sign any disclosure-consent forms as a condition of treatment.”

I would stress that, while our imaginations can come up with extraordinary circumstances wherein patient privacy may be ill-defined and contentious, the fact is that patient privacy in this country is by law generally available. That said, it often does require a minimal amount of initiative on the part of the patient or patient aide. Not a fight or a confrontation, but a simple and direct statement to let your wishes be known. Passivity is not the hallmark of a happy patient.

-art stump

swf said...

"The nurse whom had been there quite awhile in a matter of fact voice said "the doctor has a NP in training shadowing him today would you mind if she observed, I told her "no problem but when it comes time for the hernia check and DRE she will need to step out" she looked at me and said I don't blame you I have to ask...the look on her face indicated she knew it would be a big deal for at least some...."

alan: I was wondering if the NP was as gracious as the long time nurse upon news that she was expected to leave the room. Was she understanding as well?

Anonymous said...

she was a young student at a nursing school who was studying to be an NP. She came into the room during the history, stand on one foot, etc. as my PCP usually does first, then he said I will be back in a few minutes if you would stip down to your shorts (he always handles it like this so you are in your shorts as short of time as possible) then he took her and left. He returned without her when I was in my shorts and completed the physical, then he has me get dressed and does any follow up. I did chat with her in the waiting room and funny side note, I had a twinge of guilt for not letting her stay..but just a twinge and just until while we were chatting in the office while they were processing my paper work and I learned she was dating my best friends son and I was going to be attending a cook out that she was going to be at that weekend...I would have been horrified if I had given in and then saw her at the cook out. AS it was I felt good about standing up for MY wants and everyone handled it very graciously...alan

Anonymous said...

This recent discussion has highlighted two important points for me.

The first, the practice of non communication. The practice of assuming that if if the patient doesn't speak up, we'll just go about doing what we do the way we want to do it and everything is fine with the patient. The practice of "unannounced" visitors or students or observers. As Art put it: "this practice, to the extent that they employed it, was that it preyed upon the desperation and the weakened states --- both physically and emotionally --- of some of their most vulnerable and needy patients, the seriously ill. And the enabler for each unfolding episode was the bond that inevitably develops between such patients and their closest and most trusted caregivers. In such circumstances the patient is ultimately left without advocate or protector."
This is one of the most insidious practices of current medical culture.
There may be some obtuse medical professionals who don't realize what they're doing, but I think the vast majority do realize it, or at least used to "see" it. But they've "learned" not to see it anymore. They have rationalized, for their own psychological protection, that the patient doesn't mind if they don't speak up. It makes them feel better if they believe this.
The second point is that in most cases, if you do speak up, if you do insist on specific privacy measures, you will get what you ask. I had an experience where, when discussing a procedure I was about to have with the doctor, I asked if there would be any students observing. He said that sometimes the lead doctor did bring a medical student to observe. I said, at what point would have told me this if I hadn't ask you right now. He said, probably just before the procedure began. I said I didn't want any non essential observers or students. He said, as Art's story attests, that this was my procedure and they wanted me to have things the way I wanted it so I would be comfortable. But...no attempt was made to seek this information from me. It was just assumed that if I didn't speak up I didn't mind.
My observation -- It becomes more important that those of us who are not intimidated to speak up, do speak up, again and again. We become the voice of those who won't speak up, or can't. As we do speak up, we need to remind the medical field, that we represent a significant group of people who just won't tell them what they really need to but may not want to, hear. Those who have voices, need to speak up for the voiceless. That's why Art's book is so important.
MER

artstump said...

To MER from August 16, 2010

Excellent comments, MER. Especially the points about the need to in effect be the anonymous advocate for those unable to advocate for themselves.

In my view it’s not a failing for people to have unquestioning trust in their caregivers and their caregiving institutions. That’s part of the dependency dynamic that envelopes the seriously ill.

The failing lies with the institutions and the healthcare practitioners who routinely take advantage of that heartfelt trust and use it for purposes unrelated to their patients immediate care and welfare. To the extent that such betrayals of trust are the result of oversight and insensitivity, objections raised and points made by another patient several steps removed may in indeed help a conscientious caregiver become better attuned to the unspoken needs of some of their patients.

-art stump

Anonymous said...

Art Stump wrote: "In my view it’s not a failing for people to have unquestioning trust in their caregivers and their caregiving institutions. That’s part of the dependency dynamic that envelopes the seriously ill."

I agree, Art. But it's such a fragile trust that a if it's compromised, the result is what you describe in your book. And that trust can then be permanently lost.

As I've written on this and Bernstein's blog -- some of this is how medical professional are socialized to "see." We learn to "see," and we learn to "not see" certain things. Some (many)learned to become immune to nudity and modesty. We see what we think is relevant. For many (s0me?)medical professionals, modesty and nakedness isn't relevent in what they do. The relevent thing is saving or helping the patient, or perhaps "success" (whatever that means for them).
This is where medical education comes in. Not only the academic education, but more importantly the "hidden" or "underground" education -- what they learn in the field from other professionals -- e.g. "This is what they taught you in school, but here's the reality; this is how we do it around here." Sometimes this info is good. Sometimes it's not, but rather just time-saving or cost cutting measures.
Art: Would you get my email from Dr. Sherman and contact me? I'd like to discuss something with you privately.
MER

Joel Sherman said...

THIS THREAD IS NOW FULL. PLEASE CONTINUE ON PART 3.

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