Martin left for Spain yesterday, so we’re now back down to our little family of three: Mo, Miranda, and myself, plus Diggory, the wheaten terrier. The house is a little quieter and I’ve spent a lot of the day corresponding and updating the blog. I know the topics have become a bit academic recently – just an attempt to get my thoughts in order. I also read though another blog of a Burkitt’s patient in the Northwest whose treatment started back in September last year. The treatment is just so long! I always promised myself that if I was laid off for an extended period of time I’d use it to write the great American novel, or to learn to draw. So far not a lot of progress on that front. It’s probably a good warning for what I’ll be like in retirement, laying back in my Lay-Z-Boy, and growing grumpier and grumpier. Actually, although I’m only 54, I think I might actually enjoy retirement, whenever I decide I’m ready for it.

Apparently, I’m unusual in the male population in that I’ve always been attracted to strong women, and Mo certainly falls into that category. Also, we built a lot of shared experience during the 12 years that we knew each other before Miranda was born. Like many others, probably, we started living together in abject poverty without much of a clue as to where we were headed. Walden, NY, in case anyone is wondering. It used to have a knife factory, but when that closed down in the early 1900’s nothing much ever replaced it. We used to hang out at “The Talk of the Town” and play Pac-man on those glass tables, drink beer and smoke cigarettes with Henry and Ellen. From there, things got slowly less sleazy. I met Mo’s parents, and got a reputable job in NYC teaching Advanced Placement Computer Science, having spent the summer studying Nick Wirth’s book Algorithms + Data Structures = Programs; it was the skinniest book I could find on the subject! After we got married Mo joined me in my apartment in Bensonhurst in Brooklyn. (The poor fellow in the apartment next to me, who we never met, got whacked by the mob!). After that we moved to Boerum Hill in Brooklyn, and then, on a whim, to Boston – just because it looked like a nice place.

So, when Miranda finally leaves the nest, but not for a while I hope, I’m actually looking forward to resuming our former life! The coast of Maine looks like a nice place to go. The winters may be a bit tough, but global warming will probably have given it a climate like the coast of North Carolina by then.

In the West, viewed over the long-term of decades, we have seen medical procedures become safer and more effective. Increased safety and effectiveness are often thought to have come exclusively as a result of improvements in medical technology. However, each improvement in medical technology brings with it its own new and interesting risks. Also, modern technical technology is not always available, or affordable in many medical situations. The reliance on improvements in technology to bring improvements in safety obscures much of the work done in understanding individual and organizational error, and in developing quality management systems. Significant improvements in safety and effectives can also result from better safety management systems and education.

In the related arena of aviation, much has been made of safety management systems. The FAA Air Transportation Oversight System that I have worked with evaluates the design of systems and the performance of those systems using six safety attributes:

• Procedures—documented methods to accomplish a process.
• Controls—checks and restraints designed into a process to ensure a desired result.
• Process measures—used to validate a process and identify problems or potential problems in order to correct them.
• Interfaces—interactions between processes that must be managed in order to ensure desired outcomes
• Responsibility—a clearly identifiable, qualified, and knowledgeable person who is accountable for the quality of a process.
• Authority—a clearly identifiable, qualified, and knowledgeable person who has the authority to set up and change a process.

Loosely translated to the medical arena, this means that the systems and procedures established to ensure safety should be well designed to achieve the desired end, and also possess built in controls (or defenses) to ensure that the systems and procedures operate as planned. The systems must be objectively checked to ensure that they are, in fact, in place and proving effective. Objective checking involves oversight by third parties as well as self-reporting of performance measure. Risk management is a third part of this. Safety can never mean freedom from all risk, but hazards and risks can, and should, be identified and managed appropriately. For more on safety management, the reader is referred to MIL-STD-882 as revised.

The previous paragraph focused on safety management, but that it not the whole story in operating a safe system. It is a feature of human nature that we focus on bad news – the accidents that were not prevented. These are the ones that make it on the network news, but there are every day dangerous situations that do not become accidents because of the quick thinking of person on the scene. It is likely that there are more of these accidents prevented by local heroism in the medical arena than there are in the aviation domain, but neither are they totally absent there.

To improve safety, therefore, we need to know more about how to design effective safety systems, and we need to know more about individual decision making. Acting as a backdrop to all of this are the actual cases that we are attempting to make safer. A flight in an airplane may appear fairly routine to most passengers, but in fact, NTSB accident reports bear out that some of the most dangerous parts of a flight are the initial ascent, and the descent. Similarly, while admitting the truth of Bjarne Stroustrup’s words that “Proof by Analogy is Fraud,” it would seem likely that some of the most dangerous parts of a medical case are the period of admission, where not all the factors impacting the case may be known, and the discharge, where a patient is left to carry out instructions regarding dosing and self-monitoring. Clearly there are other periods of increased risk, but I want to focus on just these two: Initial Admission, and interim discharge.

It’s now been four days since I received my last shot in the current CODOX-M regimen and I revisited my blog to see how I was feeling at the similar point last time. Last time I was in hospital and had just about learned the ropes. I had problems with mouth sores which I was keeping in check with the “magic mouthwash”, a cocktail of lidocaine, Maalox (specific variety unknown), and Benadryl. I also had the early symptoms of mucositis. I was also taking dilaudid on a PCA (Patient Controlled Analgesia) device to control the mouth pain, but in hindsight I think it didn’t do much good. Compared to then, I am doing much better at home. I am a little short of breath, and any time I sit down to read or watch TV find myself drifting off to sleep.

I have been corresponding with two other Burkitt’s patients, and a common thread is how difficult it is at the beginning of the treatment.

1. First off, you’re sick. Burkitt’s is incredibly aggressive and exhibits itself in all sorts of ways. In my case, it was almost entirely limited to tongue and the jaw. And even though I was admitted within a few days of the symptoms exhibiting themselves, it was already stage 4.
2. Second, most patients do not know how a hospital works, and it’s far from clear who’s in charge. I met a multitude of doctors in the first few days and they kept asking me the same questions. I assume it was easier for them to ask the questions over and over than to actually take a few minutes and read up on my case.
3. Third: Insurance worries. Fortunately, my wife Mo is very well organized and was able to handle this, but there was a lot of initial paperwork to process, that I simply could not have done myself. Heck – my mouth was so swollen that I couldn’t hold an intelligible phone conversation, and I did not have email access in the first few days.
4. Fourth: The pain medication that you get clouds your ability to think straight.

DFBWCC was very good in providing social work support, and I would like to acknowledge that, but there is only so much they can do.

If anyone else has items to add to this list, please post them or email them to me at [email protected]. I am trying to gather my thoughts for a paper that focuses on 1) increasing the role of the patient as part of the team in medical decision making, and 2) focusing on safety improvements during the particularly vulnerable period of patient admission and initial treatment.

More insurance woes. We received a bill from Emerson Hospital, the hospital where I was initially admitted, for an obscene amount. The bill does not detail what the charges are for or whether an insurance claim was submitted. Naturally we are asking for more detail. Hospitals would do well, I would have thought, to submit bills that are understandable by the patient, but there seems little incentive for them to do so. The market forces at play in the industry do not work to reduce health care costs or increase health care quality. Problems with the crude, and often misdirected market forces, in the current health care arena are pointed out in the book “To Err is Human” and the follow-up book “Crossing the Quality Chasm.” If health-care were aviation, we would be living in the pre-deregulation era, where air travel was accident-ridden, available only to the rich or sponsored business traveler, there was only one airline to choose from for any particular journey, and there was only one flight a day.

Health-care has a lot to learn from aviation system-safety in becoming more transparent in its incident reporting, reducing costs by improvement in quality, and becoming more customer (patient) centric. Robbie, on his KickingCancer site talks a lot about mouth sores. Now I don’t know if this particular infection was preventable, but I know that one of the things that my nurses drilled into me repeatedly was about the need for rigorous mouth care, to prevent just this type of secondary infection. Just suppose how much better Robbie would have felt, and, from a purely economic front, how much cost the hospital would have saved if this particular infection could have been avoided. I would be curious to know how many incidences of secondary infection are reported for cancer patients, by type of infection, by hospital, and what the economic cost is of treating these infections. There appears to be little *economic* incentive on the hospitals to reduce secondary infection, since the cost just gets passed on to the insurance company.

I offer no pat solutions to the type of problem I detail above, but from the patient’s point of view, there is obviously an incentive to reduce the incidence of secondary infection. Not all secondary infection can be avoided, but we know, for example, that hospitals are not good places to be if you want to avoid getting sick, because that’s where all the other sick people are! The precautions with masks and gowns and Purel that I’ve seen doctors and nurses take were generally laughable, and even when I was neutropenic, and it said so on a big purple sign on the door, folks would still leave the door to my room open. Staying home seems like a good idea, but you need to know how to monitor your health and stay healthy.

Another suggestion I would offer is for those organizations operating to improve quality and cost and, and to oversee adherence to procedures, whether at the hospital, city, state, or national level, to include a central role for patients and patient coordinators in their decision making. This role should be along the lines of the customer in agile development in the software industry, recognizing that all the doctors and nurses and specialists and administrators exist only to serve the need of the customer (the patient), not the other way around.

With my new found interest in the issues, I will be following discussions on health care during the 2008 (please come soon!) elections with great interest. Leaving health care cost and quality to the market forces of the insurance companies is not going to cut it! I’m happy to be at DFBWCC; especially following the Betsy Lehman accident, I think they remain very cognizant of the need to constantly improve quality; I’ve talked about the accident with several of the folks that were there at the time. But, in the end, I can’t help thinking that in a better world, having good information about the multiple providers available to treat my condition would drive better quality and lower costs.

p.s. As you’ll see from the featured photo ¹– it’s girl scout cookie time again! Support your local girl scouts.

1. Photo no longer available ↩︎

I read Robbie Russel’s blog at http://www.kickcancer.blogspot.com/¹ on his experiences licking cancer. The link to this blog is at www.burkitts.org². Robbie, if you’re reading this blog, thanks for detailing your experiences! It seems that for all the good intents of the Institute of Medicine³ in attempting to reduce error and improve quality of service that there are still far too many snafus in the delivery of service. I deem myself fortunate in having had decent care at DFBWCC, but I can also relate to some of the experiences you went through. For example, on the night of my first big 3,000 mg. methotrexate infusion, I was not informed how long it was going to take. A nurse did the first pH test, and I was still way acid (4.2 or something) so I figured it was going to take a while. Then an hour later, a PCA (Patient Care Assistant) came in and did the pH test and told me it was 7.2. I said I thought that was unlikely and called the nurse. Turned out the PCA didn’t know how to do the pH test (surely not that hard!) and had misread the scale. From then on, the tests seemed to come at random times. They were pumping me so hard with Sodium Bicarb that I started to pee fizzy. The concept of reading the pH at regular intervals and drawing up a trend line did not seem to occur to them.

At other times, the PCA would come around and take my temperature and vital signs. I never did figure out when they were supposed to do this. I’ve been in three different wards so far at B&W and it seems to be different in each ward. Sometimes the readings would appear to be anomalous, but the concept of having a back-up thermometer did not seem to occur to anyone. At one point I asked the nurse how often they calibrated the thermometers and just got back a blank stare.

Of course, it’s not always the hospital that can screw up. Last night I was supposed to get a home neuprogen shot and clear forget. I took it early in the morning instead. Heck – it’s just an overpriced vitamin. Then the classic mistake this afternoon… In yesterday’s log I wrote how I had taken to drinking Caliber as something palatable that I can drink to keep my liquids up. Halfway through lunch I discovered I had drunk half of my brother’s beer (Dogfish Head Pale Ale – highly recommended for non-chemo patients!) So far no side effects except for a nice siesta! I am starting to feel the effects of the chemo from a few days ago, but so far nothing major and am keeping the nausea in check with my three buddies: Lorazepam, Prochlorperazine, and Zofran.

1. This site is no longer active ↩︎
2. This site is no longer active ↩︎
3. The Institute of Medicine has since been renamed to the National Academy of Medicine ↩︎