Back to updating the blog after a couple of days off. I have been having technical difficulties with the lighter laptop on loan from CSC; it won’t connect to my wireless network at home or to Netzero via dial-up. So I’m sitting here balancing a lead brick of an older laptop on my thighs, sitting up in my hospital bed. The infusions started yesterday with the Rituxan. This is a drug that is not part of the standard Magrath regimen but has been added in the stage 2 clinical trial that I’m on. I’ve been reading more about how this drug works in the book “The Patient From Hell” – required reading for cancer patients undergoing chemo and radiation therapy.

It’s an odd feeling coming to the end of the regimen. From here on out life will not be regimented and it’ll be a different type of battle. Since Burkitt’s is an aggressive type of cancer, we’ll probably know within the year whether the chemo knocked out all the Burkitt’s cells, or whether any managed to linger in some obscure lymph node somewhere. I assume that we’ll also be checking to see if there are any thus far undiscovered side effects from the chemo. The neuropathy in my feet continues to be a problem and I don’t know if it’ll affect my ability to drive. I think you never really get over cancer, but life will slowly get back to normal – I’m looking forward to growing hair again!

For this last cycle I get chemo every day for five days, so my last chemo should be on Friday evening. Then they’ll monitor me and discharge me as soon as they can. Now it’s not that I enjoy being in hospital, or that I enjoy the prospect of being in a place where there are a lot of sick people and germs, but the thought of being discharged a few days before my nadir – the period 7-10 days after the beginning of chemo when I’m feeling at my shittiest – that does bother me a bit. It seems however that that’s the general trend these days, to discharge people early. Last time when they discharged me after the IVAC round I had to dash back a couple of days later, severely dehydrated. I talked with one of my doctors about it this morning, but he thinks the conditions will be different this time. I hope so. It’s often said that the reason that hospitals are so keen to discharge people early is because that’s what the insurance companies will bear. This may or may not be so, it certainly sounds plausible. There seems to be unevenness in the degrees of safety that a hospital will bear for different stages of the overall case and different processes. Right now I’m receiving the second of two units of blood, and it’s a comforting feeling to know that my blood chemistry is monitored daily. That’s not a comfort I have at home. In the absence of public reporting for patients whose bills are paid for by insurance companies (i.e., non Medicare/Medicaid) do we really know how much the market is impacting medical system safety?

By this time next week I should be all done with the chemo infusions for the IVAC round four and beginning the steady path upwards to recuperation. Judging by how long it’s taken to begin to feel better after then end of round three this could take awhile. Today was the first time since doing the methotrexate over a week ago that I felt my energy level lift a little. The methotrexate mouth problems are clearing up, but the vincristine neuropathy in my feet shows no sign of abating. On the positive side, I’ve spent lots of time getting lost in Patrick O’Brian and am now rereading “The Letter of Marque.”

I tried helping Miranda with her math homework today, but it’s difficult translating how you understand the subject into the particular way that the school is approaching it. She understands division, of course, but did not realize that the horizontal bar in a fraction also denotes division. The methods she is taught are so cumbersome, and will be tossed aside once she has a grasp of algebra. Seems to me that schools waste too much time teaching pre-algebra and would be better served just teaching algebra! End result, I ended up frustrating her by introducing concepts that she hasn’t learned yet. My mother is probably right – math is better taught by people who had trouble learning it themselves. I had better success helping her with her trumpet practice. She’s doing well, I think, and her tone is getting much better. Her school band concert is this Tuesday. I will be in hospital that day and the current plan is for Maureen to let me listen in by cell-phone. Not sure if that’ll work, but we’ll see.

There’s a decent, but somewhat confused article about U.S. Healthcare in this week’s Economist. Confused because the article seems uncertain about what side of the debate it’s taking until the last few paragraphs. Apparently the Shrub is going to be pushing a greater role for Healthcare Savings Accounts (HSAs) in next week’s State of the Union – fine if you’re rich and can afford them – useless for anyone else. According to the Economist, the U.S. already spends about the same as other western countries on public funding of healthcare (Medicare and Medicaid) when measured as a percentage of GDP, about 6.5%. Private insurance accounts for another 8.5%. The problem is that we’re not getting value for money for that 6.5% because the government is prevented from doing so by the inflation that’s rampant in the 8.5%. Attempting to control healthcare costs in privately insured sector by messing with HSAs and tax breaks for insurance companies is ineffective because the government ultimately has no control over that sector. One of the biggest problems in healthcare is quality of care, but the public, in general, does not directly care about quality of healthcare; increasing the amount of information about the quality of care is not going to affect the market. When I say that the public does not care about the quality of healthcare, I mean that it expects all healthcare to be 100% excellent, just as it expects all commercial aviation to be 100% safe. And so it should be.

To improve the quality of healthcare and get better value for money for the 6.5% of GDP of public funding that the U.S. already spends, the government needs to be able to regulate healthcare better. A more regulated industry can set controls on quality of care and performance of hospitals. If Medicare and Medicaid were expanded to provide universal coverage in the U.S. the government could gain that leverage. Public coverage would continue coexist with private insurance – those that can afford it will always want something more – but the fact that the public coverage was also universal would put some teeth into healthcare regulation.

Of course, the Shrub will not see it this way. May he shrivel up and be cast on the compost heap of history!

I had an appointment with Dr. Jacobsen yesterday and I’m scheduled to go back in to hospital on Monday for the last round of chemo. Right now I’m at home still recuperating from the previous round – the methotrexate left my mouth somewhat messed up but it seems to be getting better. Not sure if my lassitude can be blamed on the methotrexate as well, but I’ve been doing a lot of sleeping as well, rather than write in my blog.

I gather that the Shrub is going to be talking about healthcare in his upcoming state-of-the-union address. He doesn’t have a lot of credibility left in my book after the hash his administration has made of the prescription drug benefit, but perhaps he can spark the debate on where the US thinks its headed with healthcare.

I’m following the results of the Palestinian Authority (PA) election with interest. Will the White House now stop praising the virtues of “democracy”? As I see it, democracy has never been something that the US should waste its time promoting. It’s a system of government that sometimes leads to good government and sometimes doesn’t. As Stephen Maturin is made to say in POB’s “The Wine Dark Sea,” “…he doubted that the policy that put Socrates to death and left Athens prostrate was the highest expression of human wisdom.”

Palestine needs to evolve towards an open society. Right now the things I think Palestine has to figure out, is:

• Did Hamas’s election give them a mandate to apply Shari’a law. I doubt it.
• Should Hamas continue to refuse to recognize Israel. Of course not. They need to come up with some accommodation here.
• Should Hamas disarm – not practical yet. That would assume that they actually have control over the weapons.
• Can Fatah form a loyal opposition?

I can’t see but that Israel has any choice but to continue to negotiate with the PA. It may well be, however, that they negotiate indirectly for the time being.

I’m continuing to recuperate at home in preparation for the last round of chemo and nothing much is happening on the home front. I read some articles on medical system safety yesterday. Here’s a statement from one of them, “System Changes to Improve Patient Safety.”

“If patients are educated about the course of their treatment and their medications in the context of a trusting relationship, patients can also be effective at identifying errors. They should be encouraged to ask questions and to speak up when unusual circumstances arise.”

It’s hard to argue with this, and yet I do have a quibble! Putting the whole thing in the passive voice may make it read more “academic” in a certain sense, but it does nothing to make patient education happen. At least in the aviation domain, you are shown a passenger safety video – the video may be widely ignored by anyone who’s traveled more than a few times, but the attempt is at least being made.

As many have pointed out, the reason that medical accidents don’t make headline news is because that the deaths happen singly. When a large airplane crashes we notice. It’s the same with general aviation accidents, with rare exception, when a celebrity is involved, the crash of a small airplane killing one or two passengers is a quickly forgotten footnote on the local news.

Grass-roots organizations are part of the solution for raising consciousness about medical system safety and getting things done – indeed they’re probably the beginning of the solution since they are where ideas originate from. But they have a long way to go, at least in my neck of the woods. Automation is a significant part of the solution, but none of my medical providers – not one – communicates with me by email. All my prescriptions are hand written and then handed to the pharmacy for interpretation and transcription and entry into their automated system. I am not aware of how many of my providers have automated records, but I suspect most of them don’t. My suspicion is that the providers don’t use these methods because they fear that they will create more work for them – not because they fear that they are unsafe. I was heartened to hear recently that CSC is one of the companies working on a contract for the UK NHS for the automating of medical records. Does anyone know what is happening in this area in the US?

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!