Tell me if I need to spell out more clearly what's bothering me here.

After about five days shy of three months from the CT scan that found the 13cm mass on or in one of my ovaries and numerous other, smaller, but also probably melanoma-inspired delights scattered throughout my torso, I finally have an appointment at the place I am for now merely calling "Scary Filthy Teaching Hospital/Palace of Oncological Innovation."  (I may get more specific after I have actually been seen there this go-'round, but suffice it to say that I have been there before and had promised myself that I would never go there again -- and I wouldn't except that no one at Emerson Hospital, the only hospital in Massachusetts where I feel mostly safe and the only one in walking distance of my house, has expressed willingness to lay a scalpel on me, and three people there -- oncologist, gynaecologist, gynaecological surgeon -- all insisted I needed to go back to this other place and see a specific surgeon who it turns out isn't even doing this kind of thing anymore, hence the last month at least of delay.)

The appointment I have finally obtained will be two days shy of three months after my brain surgery.  I'm sure absolutely nothing has changed in that time, that nothing has grown or spread or metastasized, because shoot, it's only been three months, and I have "slow-growing" melanoma, as one of my oncologists put it.  Right?  Right?

Sure.

After going back and forth for weeks with an administrator at Scary Filthy Teaching Hospital/Palace of Oncological Innovation, today I received this form e-mail.  I have edited it to remove specific information, stuff like my last name and the institution's real name, but other than that, it's exactly as I received it.

-------------------------------------------------------------------------------
Do not reply to this email.  Please direct all questions to your New Patient Coordinator.
-------------------------------------------------------------------------------

Dear Sara [LastName],

The information you requested is located here:
http://www.[innovation-palace].org/
request-info/?ticket=[number]

For security purposes you will be asked to answer a question to confirm your identity.

Thank you,
[Scary Filthy Teaching Hospital/Palace of Oncological Innovation]

[privacy and confidentiality boilerplate]

Great!  No problem!  So I clicked the link, and after telling the website my birthdate, this is what I got (edited the same way):

Welcome to [Scary Filthy Teaching Hospital/Palace of Oncological Innovation]

5/30/2008 4:26 PM

Dear Sara [LastName],

On behalf of everyone at [Scary Filthy Teaching Hospital/Palace of Oncological Innovation] [(SFTH/POOI)], I welcome you. We offer comprehensive and compassionate care for patients with cancer and related diseases, as well as research to improve understanding and treatment. We encourage you and your family members to feel free to ask questions and to let us know how we can enhance your experience at our Cancer Center.

Here at the [(SFTH/POOI)], world-class professionals work together to provide your care. For the most part, outpatient care and infusion treatments take place in [Palace of Oncological Innovation] buildings, while surgery, certain cancer treatments, inpatient care, and some outpatient appointments take place across the street in [Scary Filthy Teaching Hospital] buildings. Some of these services are also available at our satellite location at [some other hospital I never want to visit] in [a different but nearby neighborhood].

You are scheduled for the following appointments:
Physician: Dr. [God F. Gynaecologic-Surgery] md
Location: Gynecology Oncology
Date/Time: [date/time]

Here is the important appointment information that you asked me to send by email. Please review these directions, parking instructions, tips for medication safety, and a list of items to bring to your appointment or to have sent beforehand as soon as possible. To access the information, click on the underlined links. [And of course these were all hotlinked.]

* Maps, Directions, and Parking
* Patient and Family Handbook
* Medication Safety
* Preparing For Your First Visit
* Patient History Form
* Places to Stay

At your first visit, you will receive a detailed patient payment brochure and a 32-page [emphasis in original] Patient and Family Handbook which contains information about support services for patients and families. (You may wish to browse through the handbook but there is no need to print it out.) Meanwhile, to learn more about [(SFTH/POOI)] or your illness you can visit our web site at www.[sfthpooi].org or attend our Patient and Family Orientation (call [phone number] for more information.) Education specialists are also available by calling the [Name of Rich Dead Person] Patient and Family Resource Center at [phone number] or the [Name of Different Rich Dead Person] Health Education Library in the [Name of Still Another Rich Dead Person] Center for Patients and Familiest [sic] at [phone number].

Please read the instructions for Preparing for Your Visit as soon as possible. If you have any questions, my contact information can be found in this document.

Sincerely,

Your New Patient Coordinator

You know, I do have some ideas how they can "enhance my experience," and I haven't even gotten to the appointment yet. How 'bout you?

[Prospective patient with as-yet incurable, frequently fatal illness wipes vomit by marketing poisoning from chin, shakes off homework anxiety, heaves enormous sigh, and prepares to wait another two weeks just to go talk to someone about maybe getting some help for her mittelschmerz, fatigue, and nausea before things get much worse...]

Comments

[wheelchairdancer]

Let's hope their medical care is more personalized than push and click.

Good luck..

Wheels crossed

WCD

[Sara]

Thank you, WCD.

One of the forms I have been instructed to fill out and bring with me asks if I am experiencing depression, "sleeping problems" or anxiety.

hahahahaha

Sadly, there is no blank for fits of hysterical laughter.

[Ron Sullivan]

That's...
That's...

Oh cripes. Don't get me started on hospital PR and marketing. Who let those frackers in?

I think I'll go have a beer.

[Sara]

Please have one for me.

[Jen of a2eatwrite]

I hope it goes far better than you expect.

My mother recently had experiences at a SFTH/POOI that she didn't want to go to, and a small hospital that she'd had a good experience with when she was younger.

Much to her surprise, she had EXCELLENT care at SFTH/POOI (lung cancer) and horrendous care at small, comfortable hospital (fractured pelvis).

Let's hope you have a similar surprise. Here's sending good thoughts, vibes and everything else your way.

[Bipolarlawyercook]

Hugs. You could just print out this post and staple it to the back of the forms.

[Casey]

Thinking my best thoughts for you, and hoping the care is better than what you might expect based on that committee-made email.

WCD crosses wheels, I cross claws!

[Sara]

Thank you all.

Jen: If I hadn't been to this institution before and run for my life, I would have more hope, less fear.

BLC: Tempting. Very tempting.

Casey: Cluck, cluck! Very appropriate, since I am feeling quite "chicken" at the moment. (No offense to the girls.) :)

[Ian]

I'm staggered.

It's unfortunate but my own professional experiences with hospitals in Wyoming and Colorado have been only too similar.

Customer care had fallen by the wayside to a ludicrous level of faceless beaucracy.

It's infuriating, but don't let the buggers get you down!

Cheers
Ian

[Sugared Harpy]

Been mulling this over because I'm just so infuriated that with all the lovely wordage of the PR variety, you just wanted your fucking appointment and treatment. You just NEED your fucking appointment and treatment.

I wish I could say this was isolated, but I know better.

[Sugared Harpy]

And here, here, to you. And wishing you all the best and a speedy recovery :)

[Sara]

Thank you, Ian and Melissa (SH), for your words of support. And thank you for getting the problem.

Here is something I know, because I have been employed in administrative capacities at two other SFTH/POOIs in the Boston area, both very prestigious, "world-class" institutions attached to one of our prestigious, "world-class" medical schools, and been a patient at three including this one and also including one where I worked. The problem really is that every single person who works at each and every SFTH/POOI -- not by any means an institutional phenomenon specific to the Boston area, as you have each noted -- serves four masters. First there is the medical school to which s/he is attached (or to which his or her boss is attached), either Harvard or Tufts here in Boston; second there is the hospital itself, or rather the overarching hospital management corporation under whose umbrella each individual hospital in that particular network also competes for resources and privileges; there is the Research, and each individual's reputation and career in the world of the Research; and then, finally, there is the Patient Pool, which often becomes as much a resource to be exploited by the first three as another master to be served.

When I go to ANY hospital for ANY reason, I, a humble Patient, expect to be at the top of that list. I prefer the only other thing on that list to be the individual hospital, and I expect that hospital to put its needs after mine, for its management to consider that a reasonable expectation, and for it culturally to expect everyone who works for it to put its needs after mine, because it only exists to serve me.

I don't know anyone who can effectively serve four masters, and I know some very, very smart and accomplished people. Because the SFTH/POOI has a structure built on four inconsistently unequal pillars, the structure itself tends to becomes more culturally important within the structure than the purpose for the structure. It cannot help but be so. The result is a culture which inspires reflexive marketing. Everything must feed The Structure. If The Structure crumbles, well, where does that leave everyone inside?

[kathy a.]

sara, this is awful. wish i had some words of wisdom, or some hammer to hold over the heads of the powers that be.

i've just been dealing with some intensive medical hoopla, since my mother had a fucking stroke AND broke her hip last weekend. a "major" stroke -- she was intubated and expected to die the first day. and we camped out at the hospital and interrogated everyone handy, and thought she got great care in the hospital -- but they kicked her out after five days, a day earlier than we were told even the morning of her discharge. the mind reels.

one of her doctors made very snarky comments about hospital administration, so i have a crush on him now.

[Sara]

Oh, Kathy, I am sorry. That sounds perfectly awful. I'm glad she has at least ONE doctor on her side, though.

I hope things improve for your mother and the rest of you. Long recuperative road ahead, as I'm sure you are well aware, and I hope there will be a minimum of arguments about freakin' money for goodness' sake.