Re: Important to me

[Guest guest]

> >

> The issue that is bothering me, which may seem (and be) bizarre, has

> nothing to do with the surgery or aftercare. It is privacy

> (specifically medical confidentiality).

>

> On the group related to the problems a patient had with Dr. Ren the

> patient states, " Ren has repeatedly spoken about my case with

> perspective patients. It is my understanding from at least one

> patient, that when she asked about my case, Ren's response was, 'I

> saved her life from an ischemic bowel,' " .

>

> I have also read a number of posts where one list member, when

> reporting on another list member's surgery, mentions what the doctor

> said about the operation or the patient's progress.

>

> Is this happening because the patient signed a waiver of medical

> confidentiality and specifically asked their surgeon to discuss

their

> medical procedures with a third party?>>>>>

>

The only time a surgeon spoke of a patient's condition directly to me

was when I was in the presence of relatives. Me and Doug went over to

see how Bob Bower's sister and bil were holding out in the waiting

area after a support meeting. Then, Dr. Herron came by to report on

how the operation went.

Any other time I've been an angel or reported information it was

almost always from the person themselves or via their relatives (i.e.

- statements made by the surgeon about how good the surgery went, etc.

or what not were relayed through the patients' parents, etc.). The

parents/relatives knew that I would be calling and knew who I was.

Also, in regards to posting the info on the list -- If I'm an angel, I

ask whether the people would like their phone numbers posted. I know

that sometimes people just aren't up to talking or don't want that

information to be made public to the entire group.

People do inquire a lot about each other in the Mt Sinai group (and

with Dr. Ren's group, too). We share information and report on each

other's progress, complications, etc. But, it is always with the

knowledge of the person whom we are discussing. There are lots of

people who have surgery at either of these hospitals who have chosen

to remain pretty anonymous. They didn't establish a relationship with

someone who would be their 'angel' and check in on them/report to the

group either as an oversight or intentionally to preserve their

privacy. Some people post themselves when they are home and no one

(unless they call and talk to them) really hears much from them until

they report back in.

Now, the case with Dr. Ren, I assume you are referring to Deb. There

has been a lot of concern and interest in what happened to her. First

of all, it became so public because Deb herself posted about it. I

don't think anyone would have known otherwise. And, I recall the

postings about her ordeal occuring quite awhile after the surgery

itself (i.e. - it wasn't an immediate 'report' from her or anyone else

on her surgery). I remember reading about what happened on the BPD

Post op list first before Deb ever wrote about it on other DS lists.

So, if people are asking Dr. REn about her surgery, Dr. Ren is

responding to general concerns about what happened. I would think she

is being very careful NOT to use Deb's name and/or reveal details

(especially since this incident is currently under medical review).

The people are quizzing Dr. Ren about it because they have read

various reports about what happened and are concerned.

I would definately ask your surgeon about this, but I don't think any

specific legal documents need to be drawn up, etc. I do not think it

is the surgeons who are disussing these things with everyone. RAther,

it is the surgeon contacting the patient/family member and those

people relating the information to friends. And a friend told a

friend, and so on and so on and so on... ROFL

REst assured, there have been many people at Mt Sinai and NYU who have

had quiet, private surgeries and recoveries. IT really is up to you

as to how much information you want to reveal by telling others

and/or posting yourself.

all the best,

lap ds with gallbladder removal

January 25, 2001

Dr. Ganger/DR. Quinn assisting/Mt. Sinai, NYC

co-moderator, DS list

five months post-op and still feelin' fab!

pre

[Guest guest]

,

Thank you for your reply. I hope it was clear that I was not

questioning your (or any other list members) postings.

I think it is extremely generous of list members to share the details

of their decision making process, surgery and after-care with those

of us who are considering this huge leap. It is also encouraging to

see the level of caring and support list members demonstate for each

other.

My concern is not with anything a list member passes on regarding

another person with that person's permission or with anything someone

posts about themselves. It isn't even with something another list

member might pass on without my permission, I've alsways figured the

best way to avoid the " friend told a friend, and so on and so on and

so on... " situation was to keep my mouth shut about anything I didn't

want repeated.

My only problem is medical (or support) personnel - doctors, nurses,

medical assistants, billing clerks, hospital administrators,

janitors - or anyone else who has information about me solely because

of their position divulging that information to anyone, for any

reason, without my specific written consent.

I've read about the staffing problems in some of the surgeons'

offices and I can deal with those. I've read about the nursing

problems at Mt. Sinai and I can hire private duty nurses to deal with

those. But I can't do anything about medical staff or hospital

personnel who would violate my privacy except to stay as far away

from them as I can get.

You are correct that the quote about Dr. Ren came from Deb's posts on

her group. I'm aware from what I've read here that the subject is a

sensitive one, currently under investigation, that many list members

obviously feel strongly about. I not trying to stir up the list (or

get myself flamed) by bringing it up. No doubt the merits of the case

will eventually be decided by the medical and/or legal systems.

My concern is only whether Dr. Ren responded to other patients

questions by making specific comments about Deb's surgery. Deb says

she did, you say, " Dr. Ren is responding to general concerns about

what happened. I would think she is being very careful NOT to use

Deb's name and/or reveal details. " I don't know but Deb's assertion

that Dr. Ren violated patient confidentiality, no matter what the

reason or timeframe, is very disturbing to me.

In any case I'll certainly discuss my concerns about patient

confidentiality with any surgeon I consult but it is always helpful

to hear other people's experiences (plus it seemed like a good way

to " go public " on this list - LOL).

Lee

[Guest guest]

> I have also read a number of posts where one

> list member, when reporting on another list

> member's surgery, mentions what the doctor said

> about the operation or the patient's progress.

I think they are simply reporting what the patient told them the Dr.

said.

> If I went to a BPS/DS surgeon at Mt. Sinai or

> NYU could I specifically prohibit them from

> discussing anything about me including the fact

> that I consulted or was treated by them with

> anyone?

I seriously doubt you could absolutely prohibit the doc from

disclosing the mere fact that you are their patient. On the other

hand, I believe it's pretty standard that docs are not allowed to

discuss your treatment with anyone, with the possible exception of a

spouse.

> What patient confidentiality laws apply to

> surgeons who perform this procedure in Virginia,

> Georgia or Mississippi? What about Spain?

I hate to be depressing, but the only way you are going to get the

correct answers to these questions is to consult a lawyer in each

jurisdiction.

Tom