Sitting back at home listening to Mark Knopfler on the stereo, faced with the immediate decision of who I should listen to next. It’s been snowing here in Stow and Mo has been doing the heavy work of snowblowing the driveway. I’ve just been sitting here on the couch, sipping a banana smoothie, and dealing with the light stuff like phone calls and writing emails.

I have several articles on medical system safety to get through and am trying to get my thoughts in order about how to address the topic from the inside. The specific role of the patient in the medical team is clearly dependent on the patient himself/herself. Obviously, some patients, by nature of their condition, may be unable to do anything; but others may, by cultural conditioning, have developed an attitude that doctors are infallible and that a doctor’s pronouncements are not to be questioned. Such patients may believe that providing information not explicitly asked for during the interview period, or indeed at any time, will only confuse the issue. Unfortunately, whether intentionally or not, some doctors may encourage this attitude. As with pilots in the related aviation domain, you have to have a bit of an ego to be a doctor. You hold the life of the patient (passenger) in your hands. A doctor’s (or pilot’s) error may result in an accident and everyone will know it.

It is this mode of thinking that system safety contradicts. It says, in essence that people don’t mean to make errors, that accidents don’t happen because of a single error, and that blaming the person on the “sharp” end is both unfair and ineffective in preventing further accidents. The goal of system safety therefore is to figure out why people make errors and what to do about it. A good deal of the writing that I’ve seen about system safety seems to focus on the design of the system, and forgets that that there are two other aspects of safety that need to be considered:

1) People often prevent accidents. Even the best engineered system can fail. Case in point: this morning when Mo started the snowblower she did not realize to let out the choke. She came and fetched me and I showed her what to do and everything appeared OK. A little later however, during a break in the Mark Knopfler CD, I became vaguely aware of an unnatural beeping. After wandering through the house I tracked it down to the CO detector in the basement. The exhaust from the snowblower had drifted from the garage to the basement. Mo was not aware of the problem because of the noise of the snowblower, and I was slow to react. Note to self: Buy CO detector for garage!

2) Technology advances, but this advance is often both to the detriment as well as to the benefit of safety. Using a process not suited to the current technology can actually introduce additional risk. Technology often introduces another potentially confusing layer between the operator and the intended result. For example, while in hospital hooked up to the IV, I would often lie there helplessly, awaiting a nurse, while the infernal infusion pump beeped at me, not knowing whether the beep signified a serious malfunction or not. A simple gravity feed I can handle – when the bag is empty I’m done – but I have yet to figure out the buttons and settings on the pumps.

Bottom line, as all good engineers know, engineering is about people, process, and tools. May Allah protect us from pointy-headed process engineers!

Great to be back home after two days away. I am certainly weaker than I was before I went in for the consolidation of the 2^nd CODOX-M round, and the neuropathy in my feet is worse, making me very unsteady on my pins, but at least I don’t have to do the infusion of vancomycin morning and evening. The nurse de-accessed my portacath before I left; what this means is that she removed the needles from my chest, so now I can take a shower without having to get wrapped up in plastic. Mo continues to take good care of me at home and I don’t know how I would have gotten through all this without her. Now all I have to do is lay up for a few days, make my appointment with Dr. Jacobsen next Thursday, and it’ll be on the fourth and final round.

It seems that the Church of the Good Shepherd is not ready to let this sheep stray! Thanks for the flowers this morning, the prayers, the offers of support, and the spirit in which they are made. It is all very much appreciated to know that there are folks out there pulling for me.

This being the day after my big Methotrexate infusion I was eagerly awaiting the results of the testing of the blood draw from the night before. A level lower than 1.0 (units unknown) would mean that I would be allowed to go home. Of course, this being the weekend the lab over at Children’s Hospital was closed for the night shift. Then at 9 am Marianne my nurse brought me the news that the machine for testing methotrexate levels was broken. It seems they got it fixed in short order, however, because I got the news by 11:30 that the level was 0.44, and they could send me home with a scrip (prescription) for leucovorin. Mo and Miranda picked me up and we dropped off the scrip at the CVS drive-thru pharmacy in Maynard. Here’s where an error entered into the process. I have no idea what CVS thought they were doing, but they provided way too many pills. I called the hospital back to confirm the dosage. 30 mg every six hours precisely for the next 24 hours. Since I’d already had a dose at the hospital, I was expecting a total of 90 mg – and since each pill is 5 mg, that should have been a total of 18 pills. Instead they gave me 72 pills. The instructions on the CVS container had it right about “6 tablets every 6 hours,” but they missed the fact that this was only for a 24 hours. The defense against this potential overdose was the discussion I’d had with the nurse back at the hospital, plus the overall schedule of medications that Dr. Jacobsen had provided me with back in November. Not to make a fuss, but I’ll give CVS a call on Monday and let them know of the mistake – and ask them what to do with the excess medication!

While in hospital, my room was next to that of an elderly woman. I was only in for two days, but I could hear through the walls that she was obviously in some distress on both evenings that I was there. I asked one of my nurses about this, and she referred to her as a “sundowner.” I’d never heard this term before, but a quick search on Google (ignoring the derogatory definition on Wikipedia) reveals that this is a well known condition, otherwise known as “Sundowner’s Syndrome,” where a person with neurological impairment becomes confused as the sun goes down. Now, I assume that the term is not a precise medical definition, but the distress was clearly real, and it brings to mind yet again the degree of undeserved misery there is in this world. To be a nurse or a doctor working in a cancer ward you are faced with this every day. I suppose you get used to it and just do what you can to alleviate the misery.

Here at B&W they have a series of color codes that they announce over the speaker system. This afternoon, as I was dozing, they announced a code “grey,” which lasted about twenty minutes, followed by a code “blue.” The codes refer to various levels of patient emergency. Immediately following the announcement of the code the level of activity in the ward increases, but I’d never really figured out what the codes meant and I’d never asked. I was reluctant to ask, I think, because I knew that there was a fellow patient involved, and I didn’t like to pry, but my curiosity got the better of me so I asked Dr. Zuckerman and my nurse Eileen. After all – you’re in a hospital and there aren’t a lot of secrets in a hospital.

It turns out that “grey” is security – perhaps a family or patient has gotten into an argument with the nurse, or a patient has wandered off. “Blue” is serious. It means that a patient is in crisis and calls for the immediate assembly of the team. This afternoon when it was called it was accompanied by a call for some piece of medical equipment that I didn’t recognize. Here are some of the other codes that I remember:

• Red: Fire in the building.
• White: Bomb Threat.
• Pink: Possible baby abduction IBaby girls only?). I’ve never heard this, of course, but apparently babies over Children’s get little transponder bracelets, like the one that Martha Stewart had to wear, that trigger automatically when they leave the area.
• Amber: Local disaster – expect an increase in the number of patients. Reminiscent of the helicopters flying in on MASH.

There’s also a green, which is also bad, but I forget exactly what it is.

Chemotherapy has to be one of the simplest treatments there is. I mean, there’s no cutting involved and the only piece of equipment needed is an IV pump. OK, sometimes you have the intrathecal which is a bit tricky, but for the most part a patient could administer it himself/herself. OK, so you’ve got to mix the chemo up correctly: too much boomslang skin in the potion and you’re a gonner! You also have to monitor the blood and urine, and patient physical condition to check what to do next, but I can foresee the day when more of the treatment and process is automated than at present. What this means for the design of system safety is that chemo ought to be one of those treatments that can be made very safe.

Reading the IOM report “To Err is Human” (2000) this morning I was struck by the fact that the statistics on the number of patient deaths resulting from medical error – estimated as high as 98,000 per year in the US in one study – were not further broken down further. Some further studies were cited, focusing on narrower areas, but there is obviously a lot of work still to be done on classifying diseases and treatments, and developing taxonomies of root causes of medical error. Over in the aviation safety domain, we engineers rail at the difficulty of developing defining precise hierarchies of aircraft and engine make/model/series, and developing useful taxonomies of systems and root causes of error. Aviation has made more progress in classifying its domain than medicine has, and I’m not altogether sure that this is solely because medicine is vastly older and more complex than aviation; I suspect also that aviation engineers are by nature more ready to measure their world. Aviation has always been an engineering discipline: medicine is still frequently referred to as an art. We need both engineering and art.

[later]

They’ve just called another code blue, this time with a location in the hospital lobby. It’s been a busy afternoon. I suppose the color blue was chosen deliberately because it’s a neutral color but once you’re in the know, it doesn’t disguise anything; it means another life in crisis. Sitting here is hospital after several days at home, I am brought back to the realization of how much misery there is in this world, and it makes me realize how I value life.

Back at Dana Farber, in the infusion ward awaiting the last few injections and infusions of the CODOX-M treatment, it includes: more Vincristine (the stuff that makes my hands and feet tingle), and 3000 mg/m^2 of Methotrexate delivered intravenously – this is the big one that penetrates my brain for any Burkitt’s cells that my be lurking there; it takes multiple hours and requires my blood to be slightly basic so that the Methotrexate doesn’t crystallize in my blood stream. At some point I expect to get transferred over to Brigham & Women’s but presumably when that is, is a factor of when a suitable bed shows up. I wasn’t sure if I was neutropenic, but I showed up with a mask anyway and they put me in a private room. Finished up my last home infusion of the antibiotic vancomycin this morning, so 1 expect 1) They’ll take more blood cultures to see if the infection cleared up, and 2) they’ll be re-accessing the port on my portacath to put a bigger needle in.

With my new wireless laptop I find there is a local network here at Dana Farber, but it’s private. So no joy there. At least over at B&W I can dial in.

[later] Settled in over at Brigham and Women’s and checked out by the resident. I’m becoming quite an old hand at this! The nurse is going to put in another needle into my portacath. I have what’s called a “double lumen” which means there are two chambers that can be accessed. Right now only one of them is accessed. Judging by my correspondence with other Burkitt’s patients there are a variety of different methods of semi-permanently accessing the veins. All of them, of course, have the advantage that they save the patient numerous sticks, but I wonder what the pros & cons of the various methods are. These are the methods I’ve heard about: Portacath; Groshong; Hickman; and I suppose there are variants of those, and others. How does the medical team decide which method to use?

My Portacath has the disadvantage that the fairly thick needles have to be changed weekly. The first time I had the needles changed I didn’t know what to expect, but now, so long as it’s been done by someone who knows what they’re doing (i.e. no student nurses) it’s not too bad. When I go home and I don’t need it they just take the needles out and I can take showers and baths as normal, without having to get wrapped up in plastic wrap. Note: despite what anyone may tell you, Tegaderm works much better than Press ‘n’ Seal!

Re the earlier question I raised in my blog recent about how doctors decide which regimen to use, here’s the response I received from my oncologist:

“The choice of regimens is largely physician/institution dependent. I view HyperCVAD and the Magrath regimen (the one you are on) as essentially equivalent as the drugs in both regimens are nearly identical, just some differences in the schedule.”