My Blog, My Soapbox -- Political Interlude #2

HIPAA -- i.e., the Health Insurance Portablility and Accountability Act (1996) -- sucks. 

Among the various things HIPAA did was establish national standards for the protection of "private health information." And this blog notwithstanding, am as down with privacy as the next person -- probably more so. I certainly don't want my health care providers selling my health information to, say, Wal-Mart so that I can get customized coupon books for protein drinks or anti-nausea medications or whatever it is that cancer patients need.

But when it comes to HIPAA, the gap between theory and intent on the one side and practice and execution on the other is much (much, much) broader than it should be. 

Less so now, but for quite a few years, a significant part of my job was the negotiation of contract provisions designed to ensure the parties' compliance with the HIPAA requirements. It always struck me as odd how much disagreement there could be between reasonable parties operating from similar positions over what HIPAA requires.* But I figured we were at least working together to protect patient privacy.

Yeah, not so much. Now that I'm a patient I'm learning that more than protecting me, HIPAA just creates hassles and annoys me. Layers of permission are needed for the simplest transaction, and it's far more challenging than it should be to communicate with a doctor. It would seem providers are no longer allowed to send me email. Instead, they send me email instructing me to create an account within their private, HIPAA-compliant web sites. Then, when they want to send me a message, they send me a message telling me that I have a message in their system. Log into the system and find the message, and it turns out not to be a message. Rather, it's a notice that some page on their website has been updated with new information for or about me. So then I've got to find the update webpage. 

Add in the weird idiosyncrasies of each provider's individual system (like the insane layers of password "maintenance" requirements) and it becomes an ordeal to communicate with your doctor. And while I don't really trust Google not to go trolling through me email archive for information I'd rather they not have, there has got to be a better way for doctor and patient to communicate.

Like maybe smoke signals...


* For some reason HIPAA negotiations always made me think of the Bugs Bunny cartoon wherein Daffy Duck falls victim to "pronoun trouble":

And the Bureaucracy Rears Its Ugly Head

So my oncologist agrees to give me a referral to the Seattle Cancer Care Alliance where I can get a second opinion from a provider at one of the country's premier cancer care organizations. In fact, I'm told that referrals for second opinions are pretty much "automatic" for oncology.

Their definition of "automatic" and mine are apparently not the same. The procedure, best as I can make out, is this:

Oncologist submits request for approval for the referral to Group Health finance or some similar decision making entity. 

Entity reviews the request and, presumably, approves, but does not tell anyone that it has granted the approval. Instead, my file is just updated to show the approval. 

I have to call SCCA and let them know that I've been diagnosed with cancer and request the referral to them for a second opinion. SCCA, then, has to log into my electronic medical record at Group Health and locate the approved referral.

The process takes a week and four phone calls from me. Moreover, SCCA won't schedule the appointment until they have the approved referral. What's worse, the first available slot is three weeks out from the time they finally locate it. Even asking another one of the people I know who knows people is only able to shave a few days off the wait time. 

It starts to seem like the entire world has cancer.* 


* Aside from the people I know who are dealing with their own cancers, the number of people churning through both Group Health and SCCA is astounding. The lag time for appointments at either place is weeks, and when I finally see it, SCCA's facility is huge, and it is packed with people there for treatment. Sad and scary.

On to Oncology

I think it's fair to say that no one wants to be the person who has to tell the patient that they're going to die. Soon. It's certainly not a job I'd want to have. 

Looking back at my conversation with the oncologist, I think it's fair to say that she came into the exam room thinking I'd been told things I hadn't been told. Once we got past the introductions, she was immediately off the the races on chemotherapy, outlining the procedures involved and what I should expect. I eventually had to stop her and have her go back a few steps.

Me: Wait. Can you tell me what I've got?
Oncologist: Oh. You have non-curable stage IV metastatic colon cancer.

Me: What does that mean?

Oncologist: Well, if you do nothing you can expect to live six more months. With chemotherapy, the median live expectancy extends to two years.*

The oncologist keeps talking, but my brain has gone walkabout...

Damn George R.R. Martin. I'm not going to live long enough to find out who wins the iron throne... 

Now how am I supposed to get a date? "Divorced white male, dying of cancer, seeks single female for long-term (well, longish-term, maybe, if I'm lucky) relationship..."

I drive a crappy Chevy pick-up for 13 years, finally buy a car worth driving, and I get cancer...

I guess I was more right than I thought that it was too late to start having kids...

Forty-six plus two equals forty-eight. Really? I'm not going to live to see fifty? What sort of loser doesn't live to be fifty?...

"I can see the future, I prefer to close my eyes..."

This continues pretty much through the remainder of the conversation, both with the oncologist and with her nurse. Occasionally my brain will wake up enough to process what's being communicated, but by and large it's wandering around in its own little thought bubble trying to process the fact that I've now moved from the universal awareness (i.e., denial) that we're all gonna die someday to a far more specific -- and apparently short -- timeline. 

So while the nurse is telling me about ports and chemo schedules and handing over stacks of paper that I'm supposed to read and bring back to my first chemo appointment, my brain has finally resolved on three simple thoughts: 

I'm fucked, this sucks, and I want a second opinion. 

* For those who don't speak statistics, this means two years is the point where half the people who had what I have are dead and half are still alive. Charming. 

Family of Origin Interlude #2

I don't think I'm revealing any big secrets here -- you don't have to interact with any one of us for very long to figure out that we're all generally doing our best to wind up in the driver's seat, one way or another -- but I come from a family of control freaks. Each of us has our own unique style of control freakery, of course, but when push comes to shove you can generally rely on my siblings and I to all want to be in charge. 

Except, of course, when we're together. 

When we're together, the need for control is immediately overwhelmed by all the family of origin crap that's impossible to escape.* Put my siblings and I together and there's always this undertone of the way things were when we were kids. For the most part, like most people, we adapt and deal; ride the patterns and go with the flow. But as the number three kid, going with the flow for me means sitting somewhere other than the driver's seat.

In terms of the next step in my cancer treatment, this is a bit of a problem for me. All the patient advocate stuff tells me I'm supposed to bring someone with me to my first consultation with the oncologist. But who am I supposed to bring? I no longer have a spouse, so that rules out the obvious choice. A sibling is the next obvious choice, but there's no way to bring one of them without ceding way too much power. Under the (ultimately mistaken) impression that I'll actually have choices when I meet with the oncologist, the only person  I want to be making those choices to be me.

The medical establishments unwillingness to let me come and go on my own is going to become an ongoing issue for me in this ordeal. In this case, I finally decide that my S2BXS as the only viable option for someone to meet the oncologist with me. Fortunately, she agrees to come along. Unfortunately, it doesn't really matter. There are few decisions to be made. 

* Check out all the social science research on things like birth order and its relationship to life time success, nepotism, etc. At risk of oversimplification, I think there are two basic rules in life: first, we're all doomed to become our parents; and second, it doesn't matter how far you go, family always sucks you back to where you started.

Credit Where Credit Is Due

In telling my story so far, I’ve occasionally poked fun at some of the absurdities I experienced in the course of my treatment. Sarcasm comes pretty naturally to me, and the modern American healthcare system is nothing if not absurd. Frankly, at times it's like shooting fish in a barrel.

All that said, in truth I don't believe I could have asked for, or received, better care from either Group Health or Virginia Mason. Every single person I came in contact with, from the receptionist at the admissions desk at GH to the patient care tech who escorted me out the door at VM, did an amazing job working on my behalf. And while I found everyone I interacted with to be pretty great, there are a few folks, in particular, I’d like to single out (presented in more or less chronological order):

The Physician’s Assistant at GH urgent care whose name, regrettably, I cannot remember -- At one level, this guy had a pretty easy job. Arrange for a CT scan, have the radiologist find cancer, and then ship me off to the hospital for surgery. But based on the time I spent in urgent care, I really do believe the PA had a battle on his hands convincing VM to admit me. I do believe they really wanted to send my home with a bucket of GoLytely and wait until I got a colonoscopy as an outpatient. But given how my colonoscopy prep turned out, that would've been a disaster. So props to the Physician's Assistant who went to bat for me and convinced VM to take me in straightaway.  

Every single nurse and patient care tech on the 10th floor of VM's Jones Pavilion who provided me with care -- I'd name names if I could remember them all, but there are too many for my meager brain to recall and I don't want to risk leaving anybody out. What an amazing group of people. These folks answered my questions, listened to my complaints, advocated for me with the doctors when they thought something wasn't going the way it should, and tolerated the fact that I would disappear for hours on end. (It must be a little disconcerting to find a patient's room empty with a note on the whiteboard that says, "Call my cellphone if you need me.") The overnight nurses and techs did their best to minimize disturbances on the overnight shifts, and everyone seemed to work hard to create the best environment they could for a person to heat. A terrific group, one and all. 

Dr. Faiza Zafar, Hospitalist -- Admittedly, Dr. Zafar drove me a little crazy while I was sitting in the hospital, as she was by far the most conservative of my caregivers. She was the one telling me not to "overdo" the walking, and the one who took away my soft foods menu. But in retrospect I've come to appreciate that there was at least one conservative voice providing me care and, perhaps more important, that she was willing to stick to her guns and advocate for what she thought was right when lots of people, myself included, were pushing in another direction. I never once doubted that Dr. Zafar had my long term best interests at heart. 

Dr. Amy Harper, Surgeon -- The stereotype of a surgeon you always hear is the doctor who sweeps into the room, examines whatever broken part they're going to be working on, and then sweeps out again without ever interacting with the patient as a patient or as a person. Dr. Harper couldn't be further from this "ideal" if she was practicing on Pluto. Every interaction I had with her made me feel like the most important thing to her was how I was doing overall, not what was going on in my ascending colon. Prior to surgery she went out of her way to try to connect with my family members to make sure they knew what was going on and had their questions answered, and following surgery she personally completed the crazy paperwork my employer needed to let me get back to work. Based on my recovery, I have to believe Dr. Harper is a fine surgeon; based on my experience, I know for a fact that she's a phenomenal doctor.

All my anesthesiologists, again, none of whose name I can remember -- It sucks to be in pain, and these folks worked very hard to minimize the degree and duration of any pain I was in. If at any point my pain exceeded tolerable limits, they were there to investigate potential causes and come up with a solution. It's hard to walk the halls when it hurts too much to stand. By keeping the pain at bay, these men and women enabled me to get better and get out. 

I wouldn't wish a hemicolectomy on my worst enemy, but if you had to go through one, you couldn't do better than to go through it under the care of the people who took care of me.

My eternal gratitude to each and every one of you. 

This Blog Post Is Dedicated To...

...all the people who stopped by to visit me while I was in the hospital. 

There's no way to get around the fact that being in the hospital is inherently boring. And while I had to be there, the folks who took time out of their lives -- in some cases, significant amounts of time -- to visit me didn't. Please know I appreciated it, very much.* 


* A co-worker who visited said he was there because some years earlier he'd had his own hospital stay and what struck him most was not the people he expected to visit who didn't, but the people he didn't expect to visit who did. He made a really good point. The advantage in my case is that I didn't really expect many people to visit, so the fact that so many did was striking. And, again, thanks to each and every one of you, expected or otherwise. 

Free at Last! Free at Last! Etc.

If you routinely drive Seattle's freeways, you've probably had the experience of driving I-5 north out of Seattle, passing the University District, and then somewhere about 85th finding the traffic, for no clear reason, bog down and instead of doing sixty you're doing thirty-five. This lasts for a little less than a mile, when suddenly, but again, for no obvious reason, the freeway opens back up, everyone floors it, and now you're doing seventy (at least I am -- the Roadster was made to go fast). 

The hospital experience on Monday was a lot like that spot on I-5 where things open up. Suddenly, things start moving very quickly. Again, the morning starts with check ins from the various doctors and this time all are on the same page. It's time to turn off the epidural and see if the pain can be controlled with pills. If so, I'll be out the door. 

10, 9, 8 ...

By late morning the anesthesiologists are satisfied, and the epidural is removed. (This is where I learn about the tape they used to hold it all down. Yikes!)

... 7, 6 ...

Around lunchtime the nurse shows up to let me know I've been moved off the liquid diet and am free to eat whatever I want. A taco salad, grilled ham and cheese sandwich, and a mocha shake will be the only real meal I eat in the hospital. While I'm eating it, a technician shows up to remove the catheter. (Finally!) Happily, he's careful to move my tray of food to the other side of the room before removing the device. (Deep breath, exhale, and, once again, yikes!) 

... 5, 4 ...

A patient care tech comes in to let me know that I will definitely be going home, but that it'll take a little while before everything's set for my release. She's asks if I want to shower before I go. Absolutely. So she brings me towels, soap and shampoo -- everything I need to use the room's shower. Well, almost everything. It seems the room has been undergoing some plumbing work, and the shower doesn't actually have a shower head on it. It's just an open pipe. Under normal circumstances I might care, but at this point I am not going to be the cause of any delays so I just shower under the pipe. It works well enough for me, though it does basically flood the entire bathroom (sorry!). 

... 3, 2, 1.

Shortly thereafter the Physician's Assistant shows up with my discharge paperwork and painkiller prescriptions. He reviews what I need to do once I'm out of the hospital and asks if I have questions. I don't. My visitors and I grab the paperwork, the backpack with my junk in it, and the flowers I've accumulated since I arrived and we bolt. 

At 3:00 I'm back in my condo.

There's Not Much to Say About Hospital Food When You See So Little of It

I must admit to being unkind to a colleague at work the other day (and thus long after this hospital adventure was over). She's very friendly, but not someone I see frequently, and I bumped into her on my way out to lunch with a friend. She was in the hall waiting for the elevator.

Me: Hey! It's been awhile, how are you?

She:  I’m good. How are you? You look like you’ve lost some weight.

Me: Yeah, a little bit.

She: How’d you do it? Did you do something specific?
Me: Yeah, I got cancer.

In retrospect, that probably wasn’t the best approach (sorry!). And as I think about it, the cancer probably had less to do with the weight loss than the fact that during a week long stay in the hospital I was fed just one legitimate meal. 

Prior to the surgery, the colon prep and surgical prep limited me to clear liquids. Now that I'm post surgery, I'm on a somewhat contentious progression back to real food: "clear sips," liquids, soft foods, food. 

The problem starts with clear sips. At some point on Saturday the nurse puts a small cup of apple juice in front of me while Sib4 is down visiting. The nurse tells me to make it last two hours and Sib4 and I immediately start smirking at one another. We both know there is no way in hell that cup of liquid is going to last two hours. I don't nurse drinks.* And thirty minutes later it's gone. Happily, I'm able to convince someone to bring me more long before the two hour window has elapsed.

Things get even more interesting on Sunday. When they visit, the surgeons are impressed enough with my walking, my pain levels and the way my incision looks to leapfrog over liquids to soft foods. It's been a week since I've had solid food, so the hour it takes for verbal instruction to become a documented executable command seems interminable. But eventually, the nurse brings the "soft foods" menu.

The first item listed? A sausage and cheese omelette. Uh, no. Skipping past the omelettes, hamburgers, grilled sandwiches and other items that don't strike me as even remotely "soft," I land on cream of wheat, pudding, and a scoop of egg salad. Given a week without solid food, I'd rank this as one of the best meals I've ever had. (It's all a matter of perspective.) Unfortunately, before I can get around to ordering anything more, my hospitalist appears. She's far less impressed with my progress than the surgeons -- or at least far less willing to deviate from the clear sips, liquids, soft foods, food progression -- so she takes away my soft food menu and puts me back on liquids. At least the liquid menu still has milkshakes. 

And by the following day, the menu won't matter anyway. 

* GoLytely excepted.

I Love It! I Hate It! My Epidural That Is

In general, I love my epidural. I love the fact that I don’t get all woozy and weird the way I did with the narcotics, and I love that I have a little button I can push that floods my spinal cord with additional pain killers. It’s a great little system, though not one without a few notable downsides.

First, the machine is not set to automatically spit out enough pain killers to entirely keep the pain at bay. That’s what the magic button is for. The goal is to keep a minimal baseline and have the patient self-administer additional pain killer as they need it. As you heal and the pain recedes, you stop the self-administration. Thus, over time you sort of wean yourself off the pain killers automatically. Cool, with one complication: All those hours I’m sleeping? I’m not pushing the little button. As a result, waking up is pretty brutal.

Second, it only works if the drug they’ve plugged into the machine is the right drug. And by Saturday evening, the pain docs will figure out that the standard concentration they’re using in my case isn’t strong enough. Things get much better after they have the pharmacy work up a stronger concentration of the drug, but Saturday is pretty bad.

Third, the drug is not without its side effects. Most notably in my case, it causes itchiness. And by “itchiness,” think what it might feel like to roll around naked in a field of poison ivy, but without the corresponding rash (not that I’ve done so, but it’s an evocative image is it not?). Really, really awful. And while the docs can -- and at one point do -- provide a mitigating treatment (IV-administered Benadryl), in my case they may as well just hit me in the head with a 2x4.  A few minutes after they hang the drug on the pole I’m down for the count and then dead to the world for hours. So we’ll go with itchy.

Fourth, I won’t learn about this until it comes time to remove the epidural, but the tape they use to hold everything in place is really quite something. People talk about duct tape being sticky, but duct tape has nothing on this stuff. I wouldn’t be surprised to learn Boeing uses it to hold its airplanes together. This makes removal something of a problem. When they pull it off, it pretty much takes the top layer of skin with it, leaving you with these incredibly sensitive welts that then to begin to break out into terrible acne because the tape has been blocking your pores for the last four days. Both painful and disgusting.

Last, but by no means least, there’s the small matter that you can’t just get an epidural. It seems the only way you can get an epidural is if you also have a catheter running to your bladder. And while the catheter is actually a really clever bit of technology when it’s lying on the table, actually having to use one is a whole different matter. 

After two days with the catheter, I’m ready for the epidural to go. 

Wide Open Spaces

My search for some new pathways to walk starts with the nurse's station. One of the nurses suggests the seventeenth floor, telling me that it has a much larger waiting area and is a lot less busy than the tenth floor we're on.

She lies. Seventeen is no better suited for extended periods of walking than ten.

Next up? The ground floor. On my way in at the beginning of the week I noticed signs for a coffee shop and some other services, so I figure there might be some open areas where I can walk. Not so much. Moreover, what few open areas I do find are floored with a brick-like tile with wide gaps for the mortar. The design may look nice, but dragging an IV pole across it is a nightmare. Time to move on.

In the elevator back to ten I bump into one of the fellow patients I talked with during our previous night's walk. He and his wife direct me to the "rooftop patient garden," which can be accessed off the seventh floor. So it's off at seven.

The rooftop garden is interesting. If you can look past the cyclone fence encircling the HVAC equipment, it's actually kind of nice. Planters and garden furniture pleasantly arranged looking out over the street below. Pleasant, but useless for walking with an IV pole. The uneven surface alone would be enough of a problem, but the planters, chairs and tables turns it into a bit of an obstacle course. 

I'm out of idea, so I give up and go back to my room.

But later that day, Sib4 arrives and tells me about the skybridge. The skybridge serves to connect the building I'm in with one across the street, and one end connects to a wide, glass-lined hallway that runs the length of the building while the other extends all the way through the building opposite. Altogether it's probably the length of a football field, and on the weekend there are few people using it. It's long, wide and empty. It's perfect. And for the rest of the weekend I'll spend every non-sleeping, non-socializing moment (and many of the socializing moments) walking its length.

Did I mention that I really want to get out of this hospital?