Counting down the days and the remaining chemo infusions until I’m all done. I met with the physiotherapist today and he checked out my neuropathy and strength and balance. He showed my some exercises that I can do to help me get back to normal, or at least accommodate my condition. My balance is a little bit off but it’s good enough that I won’t need a cane. I must admit that the last thing I want to do at the moment is exercise – napping is more where I’m at – but I suppose I must discipline myself.

Coincidentally, the room that I’m in is exactly the same room that I started out in, ward 5B, room 35. It’s very small, but this does give the advantage that I can reach the bathroom while I’m still attached to the IV pole. The ward is in the shape of a three-quarter circle; consequently all the rooms are wedge shaped, since they are on the circumference. The nurse’s station occupies the center of the circle; the next ring is the corridor, often littered with extra chairs and equipment, with terminals and storage closets on the edges; the outer ring has the patient rooms. There are 10 patient rooms in the ward, of which about half are double. For most of my visits here I have had a private room.

I have been reading more of “The Patient from Hell.” The author, Stephen Schneider, is a climatologist working in the field of global warming. He makes distinction between two types of knowledge that I think is important to grasp if we are to understand system safety. The one type of knowledge is the knowledge that is backed up by empirical facts; the other type of knowledge is the knowledge that comes from understanding how a process works. For the first type of knowledge, we can design processes to reduce error. For example, if a doctor submits a chemo order for a patient that is outside of what is considered the generally accepted range, the system can flag it. For the second type of knowledge, even if we don’t have objectively observed data, we can still engage in a hazard analysis and risk assessment, and design controls to try to mitigate the risks. There are difficulties, however with doing this:

• The standard way of doing hazard assessment and risk assessment is to assemble a group of experts and ask them to agree on: 1) How bad would this be if it actually occurred, and 2) What is the likelihood of it happening? You then assign a risk High/Medium/Low based on the two factors. In practice, most risks come out medium, and you only devote resources to those few risks that came out high.
• The hazard analyses and risk assessments are subjective. There may not be sufficient information to come up with good answers and we are reduced to guessing.
• There is a tendency to self-censor and not talk about risks that reflect badly on oneself or one’s colleagues.
• We cannot possibly cover all the possible hazards and risks in this way. After a while you just get satiated.
• Risks developed this way are not defensible. It’s very easy for some third party that outranks you to say ‘No – we don’t accept that that is a risk.’ Sometimes you suspect that that decision is motivated by a hidden agenda, but without facts it is hard to win the battle.

What this means for system safety is that you should never for a moment think that you have all the risks covered. You don’t. Accidents will still happen. Having skilled practitioners in the front line, versed in process knowledge, is needed to catch proto-accidents that did not get caught by the processes. In the medical arena, the folks in the front line are not the specialists or even the attending doctors, but the nurses, who are carrying out the processes. Minor incidents happen all the time and do not get reported. For example, this morning I was given medication meant for the patient in the next room – it was only when I questioned why I was receiving this medication that the nurse realized her mistake. I wonder how many times that patient has received my medication?

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?