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Wednesday, June 24, 2009

Cancer Rx & privacy: My Angels Are Come

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

207 comments:

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Anonymous said...

MER, I think your observations support Art's but take them that next step that most of us put forth...that regardless of the system, providers are people and have choices, they can not simply blame the system. And as you pointed out while the severity of the offense is no where close,,,,the mentality may be closer than we want to admit. The system may say providers are gender nuetral..but providers surely know different and still follow through even when there are options...great post, I think it hits the heart of the issue..it creates and supports an us and them mentality, which makes such transgressions easier to justify and accept.....alan

Joel Sherman said...

Posted by MER:

MER has left a new comment on your post "The Mass Media's Treatment of Patient Privacy":

Part 1

I want to continue my discussion as to why things like what happened to Art happen. Buy the way, check into Dr. Bernstein blog, volume 22, for a similar story.

Modesty violations like the kinds we describe sometimes happen because of the "deindividuation" process that happens in instituational settings such as hospitals. Deindividuation involves the hiding of one's identity. We can do that by donning a uniform, wearing a mask, 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, bad things can happen

That is, 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)

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

First of all scrubs or uniforms. Who's who? We're all dressed the same, so who can tell us apart. 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.



Posted by MER to Medical Privacy, A Patient Oriented Discussion at August 23, 2009 5:00 PM

Joel Sherman said...

Posted by MER:

MER has left a new comment on your post "The Mass Media's Treatment of Patient Privacy":

Part 2

Fourthly, operating rooms. Read text books about prepping for operations. When it comes to intimate prepping (testicals, scrotums), 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?

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?

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. 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

Any solutions? 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 isn't allowed in. Period. 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.



Posted by MER to Medical Privacy, A Patient Oriented Discussion at August 23, 2009 5:01 PM

Joel Sherman said...

Art,
If you haven't seen it, look at this story which was given on Bernstein about a second year medical student with a similar, though nowhere near as severe a violation of privacy as yours.
The story has several lessons.
First anyone can be introduced as a student. Unless they're explicit, you have no idea what they mean. This 'student' turned out to be a high school freshman. You could introduce a fifth grader the same way. If you don't ask, you'll never know what is meant.
Secondly, if you're sufficiently knowledgeable to ask, you can avoid and resolve the situation. In this case apparently the attending physician was clearly annoyed that the medical student had not been asked ahead of time.
I think any of the readers of these blogs have the knowledge to avoid situations like this.

MER said...

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.

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 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

Anonymous said...

I don't know if this is covered in this post or not. I didn't have time to read all of this. Hope to later. Some of these post reminds me of the last time I gave birth. Just when I was about to have the baby the nurse ran out of the room and I swear there was like 20 people in the room next. I think she went outside and invited everyone she could find. And I wasn't exactly in the position to say anything or stop it. I wasn't expecting to be in a show then. What's up with that? Shouldn't they tell you before the baby pops out that by the way we plan on inviting the whole city here to see this? Dorothy

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