I am slightly amused and slightly annoyed today about preparations for my upcoming (4th) breast reconstruction surgery. I love my plastic surgeon, I love his nurse, the staff is kind enough, and I feel lucky to be heading into a hospital with a reputation for excellence. HOWEVER, how can it be that this is my 4th reconstructive surgery, and EACH time I have been given different pre-and post-surgical instruction sheets?

I assumed - 4 similar surgeries involving reconstruction of the breasts, one set of directions. After all, the surgeon is working in the same area, doing similar things - preparing the pocket for the expanders and inserting them (surgery #1), removing an expander after it was infected and flushing the pocket (surgery #2), inserting the expander again after chemo (surgery #3) and last, exchanging the tissue expanders for actual implants (surgery I am having in one week). I'm having the same anesthesia (have to avoid the same things to prepare), recovering the same way, going to the same hospital, etc. Yet each time the information packets I receive (if I have received any) have held (or not held) different information.

The last packet of information/instructions has been the most comprehensive and informative yet. I APPRECIATE this, but am so annoyed that I did not get this same information before procedures 1-3. We aren't talking about a long period of time between surgeries, in which this information might have changed...my first reconstructive surgery (and bilateral mastectomy) was less than 10 months ago! (AND, before that surgery, I received NO information.)

I didn't go into the first surgery (bilateral mastectomy and immediate reconstruction) with no information at all; I asked many questions and thoroughly did my own research so that I felt really prepared. By the second surgery, when I did receive information, I was totally flummoxed: why hadn't I received this the first time? Surgery #3 didn't help solve that mystery - again, not much information. And now, with this HUGE packet of information (all stuff I could have written myself, as an expert by now), I'm just annoyed. Come on, people, organize yourselves!

Maybe I should become the office manager...it's got to be confusing for the staff to have at least 3 separate kinds of information to hand out for such similar procedures. Imagine...if they have 3 separate kinds of information to hand out for breast reconstructive surgery, how many must they have for all of the other surgeries they perform? To navigate that sea of hand-outs would require a compass and map.


Nazema said...

Organize yourselves for sure! I still can't believe in this day and age we are MAILING packets to people. What about email, websites, or if you're going to mail something...an informational DVD with interactive Q&A segments so you can immediately zoom to the info you are looking for? The medical community is way ahead in some areas, yet so far behind...

Someday when I have oodles of $$ from grants (and protected, funded time) I'd like to create tons of interactive patient education! Until then we have to hand out sucky packets too, some of which are less informative than others.

Good luck with #4!

Ed said...

Pam -

You're on to something. You were in editing and publishing and you clearly know your stuff in this surgery area. Respectfully volunteer to assist this great surgeon and his office in synthesizing an up-to-date packet, even offering to draw on resources from medical journals and cancer support groups.

You're not telling them how to do their job, just helping them do it better in a world - as Naz suggests - where Docs have too heavy loads and not enough funds directed to this kind of patient interface.

As an example, in the Down Syndrome community, my wife and I are part of a group that does seminars at Grand Rounds for residents and med students, educating them in a way that speaks to their scientific training about the need for up-to-date patient information on a birth diagnosis of Trisomy 21. Literature has shown that there is an appalling lack of current information - with highly trained Neo-natal specialists still talking about institutionalizing kids as a viable option.

Some docs aren't receptive, but most are glad to be provided with a little human experience for context and armed with better information drawn from authoritative sources they trust as scientifically sound (i.e. - peer reviewed journals and texts).

While you're out there educating other women and families about this journey you share in common, why not add one more thing? I'm sure you have loads of time (tongue planted firmly in cheek).

Best of luck setting them on the straight and narrow.

Ed Gehres