When I took philosophy in college, I remember wondering what it was that these guys did all day. Guys like Socrates (forever pronounced “So-Crates” after Bill and Ted’s most excellent adventure); did they just sit about and talk existential whatnot until the cows came home? Life was harder back then; didn’t they have jobs?
Now it seems I get it. My brain is basically never quiet. Which is unfortunate not just for me, but for any hapless sap that happens to find themselves burning free time in my presence. Like Serg.
Serg and I both love cars and driving. And that means that most weekends we try to get together on a nice morning and turn dinosaurs into noise, as I like to say. But I have a bad habit of grabbing a cup of coffee and releasing all of the crazy ideas that have been swirling about in my head. And being a kind and patient soul, Serg will actually listen. So together we hash out all sorts of solutions for all of the world’s problems. And it just so happens that our worlds had already intersected, even before we started on these drives. And that story became inspiration for the direction of the cancer center.
Colonoscopy has proven to be an extremely effective – if not particularly enjoyable – method of detecting or even preventing the development of colon cancer. But like all screening tests, it is not perfect. And when Serg took his wife for what he anticipated being a somewhat unpleasant but otherwise uneventful procedure, their lives took an unexpected detour down a road neither wanted any part of.
Traditionally, the mainstay of treatment for colon cancer is surgery, affectionately referred to as a segmental colectomy. It’s really straightforward: cut a piece of the tube out, staple the ends of the leftover tube back together, and Bob’s your uncle.
It just so happens I have had this surgery. And though I really did have an uncle Bob (like, really) I didn’t find that to be of much comfort. Granted, I am a huge baby and tolerate any illness or malady with the grace of a tired and hungry toddler, but I thought it sucked. And I didn’t have cancer, I just need a piece of my colon removed. All I had to do was get through the surgery.
Crap… I must digress.
I used to have this problem when I exercised (I know, this seems unrelated. Wait for it). For sure, I have never like running or biking anywhere near when I have eaten food, but when I started racing my mountain bike, things really got ugly. It seemed once I got started, no food – or water – would move in my gut until well after I was done. I read and tested and talked to experts and even tried medication, but I pretty much got insanely dehydrated at every race. And then barfed my guts out.
Turns out, I had a really long colon (yup, you read that right; I was, and still am, full of shit). It seems that when I would exercise, it would either twist a bit, or maybe it just affected blood flow, not completely sure. The only reason I know this was the problem is that one day it twisted and didn’t untwist. And then it died. And that hurts. Bad.
Right before Dr. Kittrell cut the offending and now thoroughly dead piece of bowel out of me to prevent a lingering death from massive infection in my abdomen, he talked to me about a colostomy. Sometimes when they cut out a piece of your colon, it’s hard to reconnect things. Sometimes the leftover hose is just too short, sometimes you are too sick, it just depends. So instead of reconnecting it, they poke it out your side. This lets everything heal up all nice, and then when you are stronger they can go back and put everything where it is supposed to go. Maybe. And yes, for the time being, poop comes out that hole.
Now when he was talking to me about this, I honestly didn’t give a happy crap where I was going to poop, I just wanted it to stop hurting, and I didn’t really want to die of peritonitis. But it turns out some patients simply will not under any circumstances have a colostomy. They don’t want to poop out of their side into a bag, not even once.
Luckily for me, I had a lot of colon. A whole lot. (I already said it).
Because reconnecting that hose means you have to have extra hose on both ends, if you happen to have a tumor that is really low – like near the end of the hose – there may not be enough left to hook it back up. Complicating things more is the fact that your anus, despite its reputation otherwise, is actually a complex and sensitive thing. And monkeying about down there surgically can well and truly ruin its function. Now in medicine, we are used to talking about all of these things that may seem giggly, but being told you might not be able to have things hooked up again – that might not be able to poop normally again, ever? That’s not even slightly funny.
And that describes what Serg’s wife Lois, was facing. The tumor was so low, there was a possibility that she could not be reconnected, and that she may be faced with some degree of incontinence or potentially a permanent colostomy.
When someone is facing a potentially deadly diagnosis and treatment options with such profound implications, there is no avoiding a mental shit storm. Everyone is different, and we are all entitled to our own views and opinions, especially in regards to the way we want to live out our own lives. But though the answer seems straight forward – do what the patient wants – it’s not even remotely that easy.
Thus far, our story makes two important points: First, it’s complicated. The discussion of diseases and treatments requires an understanding of things like physiology and anatomy that go way beyond what most people have learned. Today, even doctors don’t understand the nuances of practice outside their own specialty. And that means educating patients so that they can make an informed decision is not unlike trying to teach a college level class in about a half and hour. Which helps make my second point: everyone deserves a nurse navigator, not just to help them through the complexities of the process, but to help them understand, and to point them in appropriate directions to find the answers to questions.
And this is where things actually get interesting. More recent advances in care have tremendously improved the effectiveness of chemotherapy and radiation therapy for these types of colon cancers, to the point that low tumors such as these are often treated with this combination first. And that is what they did here.
And the tumor quite literally disappeared.
Which is great, right? But the next step is still surgery, cut out what is left to be sure it is all gone.
And so their story took another turn: why in the hell are we doing the surgery if no one can even tell if it’s there? What’s the point?
Doctors love to see advances in treatment. That being said, we are not trained to do things that haven’t been done before. Just the opposite: we are trained to do the things that have been proven effective. Which means we generally fight very hard against doing anything that hasn’t been proven, and are opposed to promoting anything that is risky or less effective. So when a patient demands to know why they should do something that doesn’t seem logical to them, it can get… well, complicated.
As a system, we are getting ready to make a very important decision: guidelines for accepting a patient’s request to be treated (or not treated) differently than routine protocol. I am a bit curious about how people react to this idea. On the one hand, it seems obvious: patients should be able to dictate their own treatment, right? And on the other hand, why haven’t we already done this?
I used to think that patient satisfaction should be the way we judge our performance in healthcare. Since people come to us to feel better, doesn’t it follow that how they feel about how we did is the most important metric? It turns out that patient satisfaction makes a horrible grading system. This is partly because of the extreme complexity of medicine that I mentioned before. For example, some people believe that exposing cancer to air makes it spread (not making that up). If you don’t understand something, you cannot make informed decisions. In addition, patients don’t always want to hear the truth, or do things that are good for them. I don’t think I even need to explain that one. These things add up to the fact that we can’t rely on the patient to decide what our best plan is.
In the current world, we strive to assure that every patient is treated according to protocol. If for some reason they don’t, we try to document why: they refused treatment. This relieves us of legal responsibility should something go wrong. I don’t know of any institution anywhere that has formally recognized that – if properly educated – patients have a right to have a say in the direction of their treatment. And that is what we are doing. And this is a really big deal.
Because we have peeps for that.
We are accredited by the Commission on Cancer (affectionately referred to as the CoC), a division of the College of Surgeons. To be an accredited cancer center, you have to meet the standards they set in place. These standards are intended to ensure that patients get quality care. There are many different requirements, such as submitting data to a nation database, monitoring things like community outreach and prevention, demonstration of a multidisciplinary approach to treatment, and measuring your organizations performance against local and national standards.
This is not one of the standards they require.
In fact, the CoC does not have any provision to allow flexibility in patient treatment based on patient wishes. So if a patient refuses to have – for whatever reason – a colostomy, it is simply unacceptable.
And many of us think that is unacceptable.
Which is why this is such a big deal. We are not as yet the tail wagging the dog, but we are unquestionably paving our own way. We can’t just do willy nilly whatever the patient’s heart desires, but we need to have a process by which we can better incorporate their personal beliefs and preferences into what we are doing. We have to decide what we consider to be our due diligence. To my knowledge, we will be the first to do this. If anyone knows differently, please let me know, because going off the reservation is not an easy thing for a small town operation like ours.
Which is precisely why I am so proud to be a part of this place.
Our journey is just beginning. Though her treatment is complete, Lois’s journey really isn’t. Cancer is one of those diseases that sticks with you, if not physically, mentally. But despite turning one way down a road when the nav system was screaming to go the other way, Lois feels she made the right choice, regardless of the outcome. Four years after making an educated decision to refuse a surgery that was protocol, she is thus far cancer free.
Would I be telling this story if things had gone differently? I believe I would. Life is full of twists and turns and bumps and ruts. There is no way to fully predict what is around the next bend. If you do your best So-Crates imitation and think on it a bit, we don’t get to pick what car we are driving (though we do have a say in how it is tuned and maintained). But for sure, we all should have at least one hand on the wheel.